Tables of contents and abstracts of recent issues
The Journal of Clinical Ethics, 2022
The Journal of Clinical Ethics, Volume 33, Number 3, Fall 2022
AT THE BEDSIDE
When Should Careproviders Deviate from Consensus?
Edmund G. Howe
FEATURES
An Argument for Standardized Ethical Directives for Secular Healthcare Services
Abram L. Brummett and Jamie C. Watson
Values Imposition and Ethical Pluralism: An Argument Against Standardized Ethical Directives for Healthcare Ethics Consultants
Autumn Fiester
Responding to Fiester’s Critique of a Bioethical Consensus Project
Abram L. Brummett and Jamie C. Watson
Addressing Racism in the Healthcare Encounter: The Role of Clinical Ethics Consultants
Vanessa Madrigal, Kate MacDuffie, and Erin Talati Paquette
PRESENTATIONS FROM THE 33RD ANNUAL MACLEAN CONFERENCE
Effectiveness of Advance Care Planning: What Works, What Doesn’t, and What Needs to Change?
Susan W. Tolle and Katrina Hedberg
Ethical Considerations in Supporting Donation after Circulatory Death:
The Role of the Dead-Donor Rule
Giuliano Testa and Robert Fine
INTERNATIONAL MODELS OF CLINICAL ETHICS CONSULTATION
Convergence and Divergence in Canadian Ethics Support Services
Marika Warren, Christy Simpson, Dianne Godkin, Allen Alvarez, and Amanda Porter
CASES AND ANALYSIS
Moral Distress and Involuntary COVID-19 Vaccination of a Mature Minor Receiving Inpatient Psychiatric Treatment
Brent M. Kious, Toni Hesse, and Philip L. Baese
Depression and Capacity to Withdraw from Dialysis
Olivia Silva, Diana Jaber, Anthony Chiu, Cyrus Adams-Mardi, and Edward Wicht
The Ethics of Distrust: The Balancing of Perspectives Is Crucial in Surrogate Decision Making and Mediation
Shahla Siddiqui
PERSPECTIVE
Knowing Together: The Physician-Patient Encounter and Encountering Others: Imagining Relationships and Vulnerable Possibilities
Norman Quist
The Journal of Clinical Ethics, Volume 33, Number 2, Summer 2022
AT THE BEDSIDE
Seeing the Invisible
Edmund G. Howe
FEATURES
Discharging to the Street: When Patients Refuse Medically Safer Options
Georgina D. Campelia, James N. Kirkpatrick, Patsy D. Treece, Jamie L. Shirley, and Denise M. Dudzinski
An Interdisciplinary Ethics Panel Approach to End-of-Life Decision Making for Unbefriended Nursing Home Residents
Howard J. Finger, Cheryl A. Dury, Giorgio R. Sansone, Rani N. Rao, and Nancy Neveloff Dubler
Ethical Issues in Providing and Promoting Contraception to Women with Opioid Use Disorder
Nadia Abbass, Tani Malhotra, Brooke Whitney Bullington, and Kavita Shah Arora
Presentations from the 33rd Annual MacLean Conference
Clinical Medical Ethics: How Did We Start? Where Are We Heading?
Bernard Lo
Defining Death Behind the Veil of Ignorance
Christos Lazaridis
Medical Decision Making and the Previvor
Valerie Gutmann Koch
CASES AND ANALYSIS
Ethical Challenges When Establishing Goals of Care in the Acute Care Surgical Setting
Lisa M. Kodadek
Infertility Counseling and Misattributed Paternity: When Should Physicians Become Involved in Family Affairs?
Stephen P. Pittman, Syed M. Alam, Tarris Rosell, and Ajay K. Nangia
LETTERS
In Response to Howe’s “Caring for Transgender Adolescents”
Laura Kimberly, Kelly McBride Folkers, Baer Karrington, Jeremy Wernick, Samantha Busa, and Caroline Salas-Humara
In Response to Kimberly and Colleagues
Edmund G. Howe
The Journal of Clinical Ethics, Volume 33, Number 1, Spring 2022
AT THE BEDSIDE
Beyond the Basics: More Ways that Ethics Consultants Can Help Patients
Edmund G. Howe
FEATURES
Ethics of Extracorporeal Membrane Oxygenation under Conventional and Crisis Standards of Care
Gina M. Piscitello, Mark Siegler, and William F. Parker
Medical Beneficence, Nonmaleficence, and Patients’ Well-Being
Lynn A. Jansen
Toxic: The Challenge of Involuntary Contraception in Incompetent Psychiatric Patients Treated with Teratogenic Medication
Jordan L. Schwartzberg, Bridget King, and Jacob M. Appel
Video Messages: A Tool to Improve Surrogate Decision Making
Giselle G. Vitcov and Robert B. Santulli
CLINICAL ETHICS CONSULTATION
Developing Skills in the HEC Communication Competency: Diagnostic Listening and the ADEPT Technique
Autumn Fiester
CASES AND ANALYSIS
Evaluating Decision-Making Capacity: When a False Belief about Ventilators Is the Reason for Refusal of Life-Sustaining Treatment
Devora Shapiro and Georgina Morley
A Wider Understanding of a Patient’s Relational Autonomy at the Time of Death
Shahla Siddiqui
ORGANIZATIONAL ETHICS
COVID-19 Ethics Debrief: Pearls and Pitfalls of a Hub and Spoke Model
Cynthia M.A. Geppert, Kenneth A. Berkowitz, Toby Schonfeld, and Anita J. Tarzian
PERSPECTIVE
The Independent Ethics Consultant: Practice Model and Opportunities
Katrina A. Bramstedt
LETTERS TO THE EDITOR
In Response to Brummett and James
Dena S. Davis
In Response to Davis
Abram L. Brummett and Eric J. James
The Journal of Clinical Ethics, 2021
The Journal of Clinical Ethics, Volume 32, Number 4, Winter 2021
AT THE BEDSIDE
Caring for Transgender Adolescents
Edmund G. Howe
FEATURES
The “Commitment Model” of Clinical Ethics Consultation: Revisiting the Meaning of Expertise and Professionalization
Maria Cristina Murano, Milena Maglio, Nicolas Foureur, and Marta Spranzi
“Prix Fixe” or “À La Carte”? Pediatric Decision Making When the Goals of Care Lie in the Zone of Parental Discretion
Amy E. Caruso Brown and Julia Ciurria
Navigating Evolving Ethical Questions in Decision Making for Gender-Affirming Medical Care for Adolescents
Laura Kimberly, Kelly McBride Folkers, Baer Karrington, Jeremy Wernick, Samantha Busa,
and Caroline Salas-Humara
Clinical Ethics Consultation
Developing a Standardized Ethics Consultation Note Template Based on the Formatting P4
references of Stakeholders
Margot M. Eves, Laura J. Hoeksema, Patricia A. Mayer, and Hilary Mabel
Improving Real-World Innovation and Problem Solving in Clinical Ethics: Insights from the First Clinical Ethics Un-Conference
Hilary Mabel, Bethany Bruno, Jane Jankowski, Margot M. Eves, and Paul J. Ford
PERSPECTIVES
Bring Out Your (Sort-of, Mostly, All) Dead: Should Those Dead by Neurological Criteria Be Research Subjects?
Craig M. Klugman
For Faster Science: Accelerated Genetic Engineering
Amitai Etzioni
LETTER TO THE EDITOR
Reflections on New Evidence on Crisis Standards of Care in the COVID-19 Pandemic
Benjamin Tolchin, Stephen R. Latham, Lori Bruce, Lauren E. Ferrante, Katherine Kraschel,
Karen Jubanyik, Sarah C. Hull, Jennifer L. Herbst, Jennifer Kapo, Ernest D. Moritz, John Hughes, Mark D. Siegel, and Mark R. Mercurio
The Journal of Clinical Ethics, Volume 32, Number 3, Fall 2021
AT THE BEDSIDE
Can Careproviders Still Bond with Patients after They Are Turned Down for a Treatment They Need?
Edmund G. Howe
FEATURES
Pediatric Intensivist and Pediatric Neurologist Perspectives and Practices on Death by Neurologic Criteria
Leslie Mataya, Lainie Friedman Ross, Ahmeneh Ghavam, and Erin Talati Paquette
The Ethics of Elective Growth Hormone Therapy in Children with Idiopathic Short Stature
Kevin Leslie Kecskemeti and Samuel Reis-Dennis
DENTAL ETHICS
What Is Best for the Child? Pediatric Dental Care during COVID-19
Priyanshi Ritwik, Kimberly K. Patterson, and Elsa Alfonzo-Echeverri
Learning about Professional Ethics from Inter-Professional Dialogue
David T. Ozar
COVID-19
Sequential Organ Failure Assessment Score Grouping Should Not Be the Primary Determinant of Allocation of Ventilators During a Pandemic
Neal P. Christiansen
CASE AND ANALYSIS
Withholding the Heimlich Maneuver: Ethical Considerations
Laura Madigan-McCown
CLINICAL ETHICS CONSULTATION
Ethics Consultation in United States Hospitals: Assessment of Training Needs
Ellen Fox, Anita J. Tarzian, Marion Danis, and Christopher C. Duke
PERSPECTIVES
Facial Transplantation: An Ethical Debate
Simra Azher
Non-Roman Catholic Physicians Should Be Permitted to Write Prescriptions for Birth Control in Roman Catholic Institutions
Abram L. Brummett and Eric J. James
LETTER TO THE EDITOR
Addressing Individual Ophthalmic Health in Public Health Research
Hassan Hashemi, Soheila Asgari, Shiva Mehravaran, Mohammad Hassan Emamian, and
Akbar Fotouhi
The Journal of Clinical Ethics, Volume 32, Number 2, Summer 2021
AT THE BEDSIDE
Seven “Between-the-Lines” Questions All Ethics Consultants Should Continue to Ask
Edmund G. Howe
FEATURES
The World Brain Death Project: The More You Say It Does Not Make It True
Ari R. Joffe, Gregory Hansen, and James Tibballs
Defining Death: Reasonableness and Legitimacy
Christos Lazaridis
Moral Distress and Feticide: Hearing the Voices of Maternal-Fetal Medicine Physicians
Iris Ohel-Shani and Dalit Yassour-Borochowitz
A Closer Look at Feticide and Moral Distress
Beth Epstein
CLINICAL ETHICS: MODELS AND METHODS
Competencies and Milestones for Bioethics Trainees: Beyond ASBH’s Healthcare Ethics Certification and Core Competencies
Kimberly E. Sawyer, Nicolas Dundas, Anna Snyder, and Douglas S. Diekema
Going Backwards to Fill in the Missing Processes for Training and Evaluation of Clinical Bioethicists: What Has Been Needed for Decades to Move Real Professionalism Forward
Evan G. DeRenzo
Clinical Ethics Consultation during the First COVID-19 Lock Down in France: The “Commitment Model”: Balancing General Questions and Individual Cases
Maria Cristina Murano, Milena Maglio, and Nicolas Foureur
A Pre-Doctoral Clinical Ethics Fellowship for Medical Students
Katherine J. Feder, Samantha K. Chao, Christian J. Vercler, Andrew G. Shuman, and Janice I. Firn
The Last Bastion of Paternalism? A Reflection on Proceduralism, Power, and Privilege
Amy E. Caruso Brown
Spring 2021, Volume 32, Number 1
AT THE BEDSIDE
People with Differences of Sexual Development: Can We Do Better?
Edmund G. Howe
FEATURES
Altruism Discussions in
the Time of Pandemic: May We Ask, May They Tell?
David John Doukas and Nathan Stout
ABSTRACT | FULL TEXT
Pandemics and Beyond: Considerations When Personal Risk and Professional Obligations Converge
Daniel J. Benedetti, Mithya Lewis-Newby, Joan S. Roberts, and Douglas S. Diekema
Commentary on “Pandemics and Beyond: Considerations When Personal Risk and Professional Obligations Converge”
Amitai Etzioni
An Ethical Analysis of
Hospital Visitor Restrictions and Masking Requirements
During the COVID-19 Pandemic
Armand H. Matheny Antommaria, Laura Monhollen, and Joshua K. Schaffzin
Perspectives on the Effectiveness of a Medical Futility Policy
Bryan Kaps, H. Alexander Chen, Gary S. Kopf, and John Encandela
CASE AND ANALYSIS
When Doctors Disagree: A Case-Based Discussion of Pro-Active Ethics
Casey W. Drubin, C. Corbin Frye, Douglas Brown, and Piroska Kopar
PERSPECTIVES
On How Ploughing a Lonely Furrow Might Affect Youths’ Sexual Health
Eva De Clercq
Medical Triage During the COVID-19 Pandemic: A Medical and Ethical Burden
Hendrik Booke and Michael Booke
The Resident and the Spouse and the Lover and the Ethicist: Considerations and Challenges in Nursing Home Romance
Jacob Appel and Mira Michels-Gaultieri
The Journal of Clinical Ethics, 2020
Winter 2020, Volume 31, Number 4
AT THE BEDSIDE
Beyond Shared Decision Making
Edmund G. Howe
COVID-19
Developing a Triage Protocol for the COVID-19 Pandemic: Allocating Scarce Medical Resources in a Public Health Emergency
Benjamin Tolchin, Stephen R. Latham, Lori Bruce, Lauren E. Ferrante, Katherine Kraschel, Karen Jubanyik, Sarah C. Hull, Jennifer L. Herbst,
Jennifer Kapo, Ernest D. Moritz, John Hughes, Mark D. Siegel, and Mark R. Mercurio
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Micro and Macro Ethical Considerations of COVID-19
Amitai Etzioni
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FEATURES
Helping Children Hurt Themselves: Why Pediatricians Ought to Support Adolescent Football Players in Their Athletic Goals
Ruth Tallman
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The Pediatrician’s Moral Obligation to Counsel Directively Against Youth Tackle Football
Lainie Friedman Ross
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The Compromising Interpretive Model as a Harm Reduction Strategy for Families that Have Chosen High School Football
Ruth Tallman
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Living in the Hospital: The Vulnerability of Children with Chronic Critical Illness
Alexandra R. Ruth, Renee D. Boss, Pamela K. Donohue, Miriam C. Shapiro, Jessica C. Raisanen, and Carrie M. Henderson
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Psychiatric Advance Directives as an Ethical Communication Tool: An Analysis of Definitions
Billy Table, Jaime Thomas, and Virginia A. Brown
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Moral Distress: A Framework for Offering Relief through Debrief
Shilpa Shashidhara and Shaylona Kirk
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CLINICAL ETHICS TRAINING
Do Clinical Ethics Fellowships Prepare Trainees for Their First Jobs? A National Survey of Former Clinical Ethics Fellows
Robert M. Guerin, Douglas S. Diekema, Sabahat Hizlan, and Kathryn L. Weise
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The Making of a Clinical Ethicist: A Personal Tribute to Al Jonsen
Ruchika Mishra
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Remembering Al Jonsen
Edmund G. Howe
Fall 2020, Volume 31, Number 3
At the Bedside
What We Should Learn from the COVID-19 Pandemic
Edmund G. Howe
The COVID-19 pandemic may have left many of us needing closeness with others more than we have before. Three contexts in which we may especially need this closeness are (1) when we must triage and some but not all will benefit, (2) when families may be separated from loved ones who have COVID-19, and (3) when people for any reason experience shame. In this article I examine sources of present, harmful emotional distancing. I suggest how we might do better in each of these contexts due to what the COVID-19 pandemic can teach us.
Meeting the Challenge of COVID-19 NYC
Meeting the Challenge of COVID-19: The Response of Two Ethics Consultation Services in New York City
Kenneth M. Prager and Joseph J. Fins
From mid-March through May 2020, New York City was the world’s epicenter of the COVID-19 pandemic, and its hospitals faced an unparalleled surge of patients who were critically ill with the virus. In addition to putting an enormous strain on medical resources, the pandemic presented many ethical issues to emotionally and physically stressed clinicians and hospital administrators. Analyses of the challenges faced by the ethics consultation services of the two campuses of New York Presbyterian Hospital, and how they assisted their clinician and administrative colleagues, is the subject of the following four articles.
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Clinical Ethics Consultations during the COVID-19 Pandemic Surge at a New York City Medical Center
Katherine Fischkoff, Gerald Neuberg, Joyeeta Dastidar, Erin P. Williams, Kenneth M. Prager, and Lydia Dugdale
The COVID-19 pandemic swept through New York City swiftly and with devastating effect. The crisis put enormous pressure on all hospital services, including the clinical ethics consultation team. This report describes the recent experience of the ethics consultants and Columbia University Irving Medical Center during the COVID-19 surge and compares the case load and characteristics to the corresponding period in 2019. By reporting this experience, we hope to supplement the growing body of COVID-19 scientific literature and provide details of the human toll the virus took on our hospitals and communities. We also aim to highlight the role of the clinical ethics consultant as well as areas of policy and law that may need to be addressed in order to be better prepared for a future public health crisis.
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Phases of a Pandemic Surge: The Experience of an Ethics Service in New York City during COVID-19
Barrie J. Huberman and Debjani Mukherjee, Ezra Gabbay, Samantha F. Knowlton, Douglas S.T. Green, Nekee Pandya, Nicole Meredyth, Joan M. Walker, Zachary E. Shapiro, Jennifer E. Hersh, Mary F. Chisolm, Seth A. Waldman, C. Ronald MacKenzie, Inmaculada de Melo-Martín, and Joseph J. Fins
When the COVID-19 surge hit New York City hospitals, the Division of Medical Ethics at Weill Cornell Medical College, and our affiliated ethics consultation services, faced waves of ethical issues sweeping forward with intensity and urgency. In this article, we describe our experience over an eight-week period (16 March through 10 May 2020), and describe three types of services: clinical ethics consultation (CEC); service practice communications/interventions (SPCI); and organizational ethics advisement (OEA). We tell this narrative through the prism of time, describing the evolution of ethical issues and trends as the pandemic unfolded. We delineate three phases: anticipation and preparation, crisis management, and reflection and adjustment. The first phase focused predominantly on ways to address impending resource shortages and to plan for remote ethics consultation, and CECs focused on code status discussions with surrogates. The second phase was characterized by the dramatic convergence of a rapid increase in the number of critically ill patients, a growing scarcity of resources, and the reassignment/redeployment of staff outside their specialty areas. The third phase was characterized by the recognition that while the worst of the crisis was waning, its medium- and long-term consequences continued to pose immense challenges. We note that there were times during the crisis that serving in the role of clinical ethics consultant created a sense of dis-ease as novel as the coronavirus itself. In retrospect we learned that our activities far exceeded the familiar terrain of clinical ethics consultation and extended into other spheres of organizational life in novel ways that were unanticipated before this pandemic. To that end, we defined and categorized a middle level of ethics consultation, which we have termed service practice communication intervention (SPCI). This is an underappreciated dimension of the work that ethics consult services are capable of in times of crisis. We believe that the pandemic has revealed the many enduring ways that ethics consultation services can more robustly contribute to the ethical life of their institutions moving forward.
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The COVID-19 Crisis and Clinical Ethics in New York City
Joseph J. Fins and Kenneth M. Prager
The COVID-19 pandemic that struck New York City in the spring of 2020 was a natural experiment for the clinical ethics services of NewYork-Presbyterian (NYP). Two distinct teams at NYP’s flagship academic medical centers—at NYP/Columbia University Medical Center (Columbia) and NYP/Weill Cornell Medical Center (Weill Cornell)—were faced with the same pandemic and operated under the same institutional rules. Each campus used time as an heuristic to analyze our collective response. The Columbia team compares consults during the pandemic with the same period during the year prior. The Weill Cornell service describes the phases of the pandemic to depict its temporal evolution and subsequent ethical challenges. Both sites report that the predominant ethical challenges centered around end-of-life decision making, setting goals of care, and medical futility, all complicated by resource allocation questions and the ambiguity of state law under crisis standards of care. The Columbia campus saw a statistically significant increase in ethics consultations provided to Hispanic patients, perhaps reflective of the disproportionate burden of COVID-19 suffered by this demographic. While Weill Cornell and Columbia saw a surge in clinical ethics consultations, the two services assumed a more expansive role than one normally played in institutional life. Serving as intermediaries between frontline clinicians and senior hospital administrators, consultants provided critical intelligence to hospital leadership about the evolution of the pandemic, disseminated information to clinicians, and attended to the moral distress of colleagues who were asked to provide care under truly extraordinary circumstances. The COVID-19 surge in New York City revealed latent capabilities in ethics consultation that may prove useful to the broader clinical ethics community as it responds to the current pandemic and reconceptualizes its potential for future service.
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Selected Papers from the UnConference
The Top 10 Questions Facing the Field of Clinical Ethics in 2020: Reflections on the Evolving Clinical Ethics UnConference
Janet Malek and Claire Horner
Evolving Clinical Ethics: A Working UnConference, held 5 through 7 February 2020 in Houston, Texas, brought together 91 participants from a variety of institutions, many of whom are engaged in clinical ethics work. The event followed the success of the first Clinical Ethics UnConference hosted by the Cleveland Clinic Center for Bioethics in 2018, and offered an opportunity for ethicists to share both their challenges and their solutions to clinical ethics issues. In this article we explore the emerging themes of the second UnConference and identify the top 10 questions currently faced by the field. We address both unresolved issues and areas of agreement and highlight new collaborations that have been developed to work toward greater standardization in our field.
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Clarifying and Expanding the Role of Narrative in Ethics Consultation
Andrew Childress, Susannah W. Lee, Jeff S. Matsler, and Jeffrey S. Farroni
Understanding a patient’s story is integral to providing ethically supportable and practical recommendations that can improve patient care. Important skills include how to elicit an individual’s story, how to weave different narrative threads together, and how to assist the care team, patients, and caregivers to resolve difficult decisions or moral dilemmas. Narrative approaches to ethics consultation deepen dialogue and stakeholders’ engagement to reveal important values, preferences, and beliefs that may prove critical in resolving care challenges. Recognizing barriers to narrative inquiry, such as patients who are unable or refuse to share their story, is also important. In this article we offer specific steps and guidelines that ethicists can follow to systematically elicit and construct patients’ stories. We provide a case example to illustrate how a narrative approach to ethics consultation illuminates salient ethical issues that may otherwise go unnoticed. We argue that this approach should be part of every consultant’s tool kit.
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The Ethics Ambassador Program: A Grassroots Approach
Kristin Furfari
The Ethics Ambassador program at the University of Colorado Hospital was born from a desire to encourage earlier ethics consultation, with the goal of providing timely, effective, and patient-centered ethics support. The selected Ethics Ambassadors are individuals from multiple roles across the hospital who receive regular education to serve as an ethics resource for their respective units or specialties. As embedded individuals, they are better able to recognize the unique needs and challenges of their units and provide relevant ethics education to staff and faculty. Outcomes of the first year of the program illustrated the diverse ethics needs across the hospital and the benefits of utilizing embedded individuals, able to straddle both the domains of ethics and the needs of their individual units.
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Building an Organizational Ethics Program on a Clinical Ethics Foundation
Timothy Lahey, Evan G. DeRenzo, Joshua Crites, Joseph Fanning, Barrie J. Huberman, and John Paul Slosar
Organizational ethics programs often are created to address tensions in organizational values that have been identified through repeated clinical ethics consultation requests. Clinical ethicists possess some core competencies that are suitable for the leadership of high-quality organizational ethics programs, but they may need to develop new skills to build these programs, such as familiarity with healthcare delivery science, healthcare financing, and quality improvement methodology. To this end, we suggest that clinical ethicists build organizational ethics programs incrementally and via quality improvement projects undertaken in collaboration with senior clinical leaders. Organizational ethics programs often differ from clinical ethics programs in their membership and processes, and likely will require ethicists to forge new partnerships with a wide array of organizational leaders. With attention to the ways that organizational ethics programs differ from clinical ethics programs, and investment in quality improvement methodology and formal institutional needs assessments, clinical ethics leaders can position an organizational ethics program to advocate effectively for visible and compelling alignment of leadership decision making with the values of the organization.
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Demonstrating Value Through Tracking Ethics Program Activities Beyond Ethics Consultations
Susannah W. Lee, Jordan Potter, Jeff S. Matsler, and Steven Shields
Demonstrating value is an ongoing process and requirement for institutional survival for ethics programs. Although our ethics program has significantly increased our ethics consultation volume and maintains a robust database that tracks ethics consultation data, these data regarding ethics consultations alone do not accurately represent the program’s overall activities and value to the institution. The roles and responsibilities of clinical ethicists extend beyond clinical ethics consultation, and there are many other ways that clinical ethicists contribute and add value to their institutions. This article describes our ethics program’s early efforts to systematically track ethics program activities outside of ethics consultations as a way to demonstrate additional value to the institution that goes beyond ethics consultation. By systematically tracking activities such as internal ethics education sessions, conference presentations, publications, grants, committee/policy work, and other activities, our ethics program has been able to gather substantial quantitative data that highlight our program’s numerous activities and outreach, both within and outside the institution, that provide additional value to the institution beyond our ethical consultation activities.
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Variation in Clinical Ethics Fellowship Programs: Lessons from the Field
Bryanna Moore and Claire Horner
Given the enduring debate over what constitutes quality, and therefore appropriate training, in clinical ethics consultation, it is unsurprising that there is variation in the structure and content of clinical ethics fellowship programs. However, this variation raises questions about the value of fellowship training when the ethicists that emerge from these programs might be quite different. The specifics of fellowship programs are largely internal. As such, the extent of variation and whether such variation is problematic remains unclear. In this article, we summarize lessons learned from discussions between fellows, their mentors and program directors at the 2020 Clinical Ethics UnConference, and outline some possible ways to advance the conversation about variation in fellowship programs and training. We argue for the more open sharing of training specifics in order to help break down the siloed nature of fellowship programs. Greater transparency could, firstly, allow for more robust reflection on and refinement of training practices and, secondly, allow us to better balance professionally appropriate consistency with unavoidable or desirable variation based on local norms, culture and leadership.
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Debriefing as a Response to Moral Distress
Georgina Morley and Shilpa Shashidhara
There are few evidence-based interventions that have been developed that mitigate the negative effects of moral distress. Group debriefing is one approach that some clinical ethicists have adopted as a response. However, there is very little academic literature or empirical research that identifies best practices and approaches to debriefing as a response to moral distress. Our aim at the 2020 UnConference was to share our different approaches to debriefing with other clinical ethicists to identify best practices or guiding principles to enhance our respective approaches and meet the needs of healthcare professionals. In this article we share an overview of our respective approaches, reflect on our discussion with other clinical ethicists and healthcare professionals, and propose foundations to move debriefing forward as an intervention to address moral distress in the field of clinical ethics.
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Summer 2020, Volume 31, no. 2, Summer 2020
At the Bedside
Sweetening the “Sweet Spot” of Dementia
Edmund G. Howe
Alzheimer’s disease is singularly tragic in that it may rob patients of much or all of their personal identity. Some persons fear this outcome so much that they talk of wanting to find the “sweet spot,” a time midway in the course of ever-increasing dementia, during which they are able to foresee a possible loss of identity in sufficient time to end their life before they lose the capacity to choose to do so, and before further devastation occurs. This article presents the belief of some experts that patients always retain a basic, core underlying awareness. Practical approaches that careproviders and caregivers can take to maximize patients’ quality of life are discussed. The possibility that patients and loved ones can find meaning in last months and years of life is emphasized.
Features
Non-Accidental Trauma Associated with Withdrawal of Life-Sustaining Medical Treatment in Severe Pediatric Traumatic Brain Injury
Areg Grigorian, Christian de Virgilio, Michael Lekawa, Divya Ramakrisnan, Rebecca Barros, Eric Kuncir, and Jeffry Nahmias
Introduction. In highly developed countries,
as many as 16 percent of children are physically abused each year. Traumatic
brain injury (TBI) is the most common injury in non-accidental trauma (NAT) and
is responsible for 80 percent of fatal NAT cases, with most deaths occurring in
children younger than three years old. Cases of abusers who refuse withdrawal of
life-sustaining medical treatment (LSMT) to avoid criminal charges have
previously been reported. Therefore, we hypothesized that NAT is associated with
a lower risk for withdrawal LSMT in pediatric TBI.
Methods. The pediatric Trauma Quality Improvement Program database was
analyzed (2014 to 2016) for patients aged 16 and younger with TBI and Glasgow
Coma Scale (GCS) of 8 and lower on admission. Patients with a head Abbreviated
Injury Scale (AIS) of 2 or less or who died within 48 hours were excluded. A
multivariable logistic regression model was used for analysis.
Results.
Of 2,209 TBI patients, 92 (4.2 percent) had withdrawal of LSMT. Compared to
those without withdrawal of LMST, those with LMST had statistically similar
median age (three years of age versus seven years, p = 0.07) and a higher rate
of NAT (33.7 percent versus 13.5 percent, p < 0.001). The most common specified
perpetrator was a father/stepfather/male partner (70 percent). After adjusting
for covariates, factors associated with higher risk for withdrawal of LSMT
included age of less than three years (OR 2.38, CI 1.34-4.23, p < 0.05) and NAT
(OR 1.86, CI 1.02-3.41, p < 0.05).
Conclusion. NAT is associated with increased risk for withdrawal of LSMT
in pediatric TBI. Age of less than three years is similarly associated with a
higher risk for withdrawal of LSMT. Future research in this population is needed
to determine what other factors predict withdrawal of LSMT and what resources,
such as social workers and/or ethics consults, are utilized.
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Abusive Head Trauma and Parental Participation in Pediatric Decision Making
Erin Talati Paquette and Lainie Friedman Ross
Decision making for children who suffer abusive head trauma invokes multiple ethical considerations. The degree to which parents are permitted to participate in decision making after the injury has occurred is controversial. In particular, in this issue of The Journal of Clinical Ethics, Grigorian and colleagues raise concerns about the potential for conflict of interest in end-of-life decision making if the parents are facing criminal charges that could be escalated if the child dies. There are additional concerns about the parents’ capacity to make decisions that are best for the child, given that the injury occurred. We argue that there are important reasons not to exclude parents from the decision-making process and that, with appropriate safeguards in place, parents are integral to determining what is best for the child.
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The Dartmouth Dementia Directive: Experience with a Community-Based Workshop Pilot of a Novel Dementia-Specific Advance Directive
Megan E. Bunnell, Sarah M. Baranes, Colin H. McLeish, Charlotte E. Berry, and Robert B. Santulli
Dementia is a growing issue at the end of life that presents unique challenges for advance care planning. Advance directives are a useful and important component of end-of-life planning, but standard advance directives have less utility in cases of loss of capacity due to dementia. An advance directive designed to specifically address end-of-life issues in the setting of dementia can provide patients with increased autonomy and caregivers with improved information about the desires of the individual in question. The Dartmouth Dementia Directive is a dementia-specific advance directive, available online, that seeks to address common concerns of individuals who are planning for dementia-related end-of-life care. This directive was piloted in a community-based workshop, which provided important details and perspective on the best use of dementia-specific advance directives in the greater population.
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Should Positive Claims of Conscience Receive the Same Protection as Negative Claims of Conscience? Clarifying the Asymmetry Debate
Abram L. Brummett
In the debate over clinicians’ conscience, there is a greater ethical, legal, and scholarly focus on negative, rather than positive, claims of conscience. This asymmetry produces a seemingly unjustified double standard with respect to clinicians’ conscience under the law. For example, a Roman Catholic physician working at a secular institution may refuse to provide physician-aid-in-dying on the basis of conscience, but a secular physician working at a Roman Catholic institution may not insist on providing physician-aid-in-dying on the basis of conscience. This article outlines arguments against this asymmetry and critiques them for failing to distinguish between positive claims of conscience as positive or negative rights. I suggest the asymmetry debate should be focused on whether positive claims of conscience as positive rights ought to enjoy the same protections as negative claims of conscience. Clarifying the debate in this way helps elucidate some of the best reasons for the asymmetry, which these arguments have not addressed. This article does not take a definitive position on whether the asymmetry is justified, but attempts to bring some focus to the debate by directing arguments against the asymmetry to address the significant differences between positive claims of conscience as positive rights and negative claims of conscience.
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Positive or Negative? Consistency and Inconsistency in Claims of Conscience
Dominic J.C. Wilkinson
The debate about positive and negative claims of conscience is, in large part, about ethical consistency. In this commentary I argue that there can be differences between conscientious provision of treatment and conscientious nonprovision of treatment that are ethically relevant. However, in many cases, including those described in this commentary, there is not sufficient ethical reason to treat them differently. This means that asymmetrical conscientious objection policies are potentially unjustified.
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Conscientious Objection in Healthcare: Neither a Negative Nor a Positive Right
Alberto Giubilini
Conscientious objection in healthcare is often granted by many legislations regulating morally controversial medical procedures, such as abortion or medical assistance in dying. However, there is virtually no protection of positive claims of conscience, that is, of requests by healthcare professionals to provide certain services that they conscientiously believe ought to be provided, but that are ruled out by institutional policies. Positive claims of conscience have received comparatively little attention in academic debates. Some think that negative and positive claims of conscience deserve equal protection in terms of measures that institutions ought to take to accommodate them. However, in this issue of The Journal of Clinical Ethics (JCE) Abram Brummett argues against this symmetry thesis. He suggests that the relevant distinction is not between negative and positive claims of conscience, but between negative and positive rights of conscience. He argues that conscientious refusals and positive claims of conscience are both already protected as negative rights of conscience, but that this does not require institutions to accommodate positive claims of conscience. In this article I will argue that both Brummett and the authors he criticizes share a wrong view about the existence of conscience rights in healthcare. I will argue that there is no right to conscientious objection in healthcare, whether positive or negative. Thus, contra Brummett, I argue that the question whether such rights are positive or negative is as irrelevant as the question whether the claims of conscience are positive or negative.
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Considering Uterus Transplantation for a Same-Sex Couple: A Case Study
Giuliano Testa, Liza Johannesson, and Anji E. Wall
A woman with congenital absence of a uterus applied for participation in a clinical trial for uterus transplantation. She was married to a woman who had the potential to carry a child without the need for aggressive medical intervention. Thus, the question arose regarding whether the infertile partner should be considered for uterus transplantation. In this article we discuss the ethical issues with uterus transplantation for a member of a same-sex couple, whose partner could carry a pregnancy. We review the medical criteria for uterus transplantation, discuss the additional options for parenthood in same-sex couples, examine how to determine if this meets the criteria of just distribution of uterus grafts, and ultimately argue that the value of gestation is at the level of the individual rather than the couple.
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Clinical Ethics Consultation
How Much Volume Should Healthcare Ethics Consult Services Have?
Avery C. Glover, Thomas V. Cunningham, Evelina W. Sterling, and Jason Lesandrini
Background. No standard method exists to assess how many consults a healthcare ethics consultation (HCEC) service should perform. To address this, we developed a method to estimate the volume of HCEC services based on a mixed-methods approach that included a systematic review and survey data on the volume of consult services requested.
Methods. Our investigation included a systematic review of studies that reported the volume of HCEC services that were requested from 2000 to 2017, institutional surveys, and statistical analyses that estimated the volume of HCEC services that were adjusted to the size of the hospitals in the survey and to population acuity.
Results. We contacted the authors of 19 studies that met our inclusion criteria; 17 authors responded to the institutional survey and five provided annualized data points. We found that standard methods of reporting the volume of HCEC services led to inaccuracies in estimating the growth of HCEC services over time. To rectify this, we proposed two means to estimate volume based on either the service goals of HCEC services or hospital size and acuity.
Discussion. The statistical limitations of our study highlight the need to standardize the sharing and reporting of data in clinical ethics. Future work should further standardize methods of HCEC quality assessment using measures similar to those we describe.
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Answering the Call for Standardized Reporting of Clinical Ethics Consultation Data
Sharon L. Feldman, Sundus H. Riaz, Joshua S. Crites, Jane Jankowski, and Paul J. Ford, on behalf of the Cleveland Clinic HCEC Service
Benchmarks against which healthcare ethics consultation (HCEC) services can assess their performance are needed. As first-generation benchmarks continue to be developed, it is the obligation of the field to continually evaluate how these measures reflect the performance of any single HCEC service. This will be possible only with widespread reporting of standardized data points. In their article in this issue of The Journal of Clinical Ethics, Glover and colleagues provide a valuable preliminary approach for assessing appropriate consult volumes for a HCEC service. The limitations of their study read as a call to action for the field of clinical ethics to expand and standardize data reporting so that more robust metrics can be developed. In response to this call by Glover and colleagues, the Cleveland Clinic HCEC service provides consult data from 2015 through 2019 for one of its medical centers, and offers an additional volume-based metric, consult-to-ICU-to-bed ratio (CiBR), that may add nuance to any normative assessment of HCEC service consult volume. Given that volume-based metrics are the native language of the clinical environment, efforts to improve such metrics in the field through transparency and standardization are warranted. However, the expositive power of volume- based metrics is limited; additional domains related to quality and outcomes are needed.
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Financial Decision-Making Capacity and Patient-Centered Discharge
Annette Mendola
An ethically sound discharge from the hospital can be impeded by a number of factors, including a lack of payor for a patient’s care, a lack of appropriate discharge options, and a lack of authority to sign a patient into a long-term facility. In some cases, the primary barrier involves the patient’s lack of financial decision-making capacity.
When a patient’s income comes primarily from government assistance, financial decision making is connected to both the individual’s well-being and to fair allocation of resources. Taking away another person’s financial independence is a substantial intrusion on autonomy and should not be considered lightly. However, poor management of funds can lead to homelessness, medical noncompliance, vulnerability to financial exploitation, and other threats to human flourishing. As with medical decision-making capacity, poor decisions alone do not invalidate an individual’s right to self-determination. And as with medical decision-making capacity, such determinations should not be made ad hoc or be capricious, but should rely on sound assessment criteria. When there are justified concerns that a patient may be vulnerable due to limited financial decision-making capacity, an evaluation should be completed and a surrogate payee be sought, when appropriate.
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Practice
Ways of Being in Generalist Practice: Using Five “T” Habits of Mind to Guide Ethical Behavior
William Ventres and Marc Tunzi
The practice of generalist medicine differs from the practice of other clinical disciplines. We postulate that the application of ethics in generalist practice similarly differs from its application in other healthcare settings. In contrast to the problem-focused practice of ethics in other medical specialties, the practice of ethics in generalist medicine blends habits of mind with behaviors applied routinely over time—an ethical way of being. Using a graphic summary and tabular matrix, we present five “T” habits of mind (time, talk, tact, touch, and trust), associate them with applicable practice characteristics, and link them to observable clinician behaviors to demonstrate how the application of ethics in generalist practice is a day-to-day endeavor and not simply a means to resolve episodic conflicts. We textually review key aspects of the matrix and present two case studies that illustrate how such habits of mind and practice behaviors inform the ethical way of being we espouse. We invite generalist practitioners to incorporate the five “T” habits and associated behaviors into their daily care of patients, and we encourage clinical ethicists and other clinical faculty members to consider using them as a model for ethics education with medical students and resident physicians.
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Perspective
Compassionate Communication and End-of-Life Care for Critically Ill Patients with SARS-CoV-2 Infection
Ángel Estella
Public health strategies recommend isolating patients with SARS-CoV-2 infection. But compassionate care in the intensive care unit (ICU) is an ethical obligation of modern medicine that cannot be justified by the risk of infection or the lack of personal protective equipment. This article describes the experiences of clinicians in ICUs in the south of Spain promoted by the Andalusian Society of Intensive Care SAMIUC, in the hope it will serve to improve the conditions in which these patients die, and to help their families who suffer when they cannot say good-bye to their loved ones.
In the south of Spain, healthcare professionals use daily videoconferencing to improve communication between clinicians, patients, and their relatives who cannot visit them in the ICU. This close communication allows families to see their loved ones and extends communication between healthcare professionals, patients, and their relatives. To allow family members to accompany patients at the end of life, it is possible to adapt public health rules to the epidemic situation.
The Journal of Clinical Ethics, Volume 31, no. 1, Spring 2020
At the Bedside
Beyond Determining Decision-Making Capacity
Edmund G. Howe
One of the most important and difficult tasks in medicine is to determine when patients have the capacity to make decisions for themselves. This determination may determine a patient’s life or death. This article presents criteria and approaches now used to make this assessment and discusses how these approaches are presently applied in five common disorders that can serve as paradigms for approaches in other disorders. I propose that since there are new diagnoses and treatments, reconsidering our current practices is warranted. The possibilities that clinicians can nudge patients to make better choices for themselves and, above all, that clinicians can maintain and maximize positive patient/careprovider relationships during and after these assessments, are emphasized.
Features
On Transference in Ethics Facilitation: Recognizing and Working through the Past in Surrogate Decision Making
Robert M. Guerin
Clinical ethics consultants often confront the most difficult clinical encounters, typically in the setting of chronically critically ill patients and surrogate decision makers. These encounters require not only analytical skills but interpersonal skills as well. In this article, I focus on an interpersonal skill absent from the American Society for Bioethics and the Humanities Task Force’s Core Competencies for Healthcare Ethics Consultation. I introduce the psychoanalytic concept of transference and argue that knowledge and use of transference phenomena are sometimes indispensable for ethics consultation with surrogate decision makers. For solicitation of moral views, disclosure of relevant beliefs and values, and identification of the central ethical question—essential to assessment and analysis—cannot at times begin without recognition and working through of transference.
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A Listening Tour: Pediatric Clinical Ethics Rounds
Stowe Locke Teti
A two-year rounding program was initiated by the clinical ethics consult service (CECS) to improve ethics program integration and utilization at our 323-bed tertiary care pediatric hospital. Two critical variables were identified for improvement. One: identification of cases in which an ethics consult would have benefited clinical care but was not requested. Two: earlier detection of cases for which the medical team and/or family eventually sought ethics consultation but that worsened during the delay. Improvement relied on eliciting dialogue with the CECS by the medical team and/or patients and families, when it had either not occurred before or had not occurred when it would have been most beneficial. The indirect nature of the improvements sought posed a specific challenge: how does one elicit such action from others? How does a small program with less than one full-time equivalent position that is dedicated to clinical ethics, and little funding, effect such a process change across an organization with more than 600 physicians, 2,000 nurses, 600 medical students, and thousands of other clinicians and staff? The following accounts such an effort and the accompanying two-year study undertaken to document the results. The data presented demonstrate improvement in both identified variables: increased overall utilization of the CECS and earlier detection of cases in which the CECS is typically engaged.
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Physician Burnout and Ethics Committees
Kristin Edwards and Richard L. Newman
This article provides a brief background of key issues in physician burnout, a significant problem in the healthcare industry. The extent and severity of burnout are not well understood; and those seeking help are often stigmatized. A number of different approaches to alleviating burnout have been suggested, but the problem lacks any single or simple solution.
We posit that an ethics committee may be well positioned to help address this issue because of its unique position within an institution. An ethics committee serves the entire hospital staff regardless of department. As such it may be able to identify common elements in the development of burnout, and can serve as a conduit to administration in identifying these. An ethics committee can obtain information about the extent of burnout by conducting surveys to assess the extent and severity of burnout in an institution, and serve as a central resource to help address and alleviate it.
Finally, an ethics committee may be able to act as an intermediary between practitioners and the administration, in advising the administration of the extent of the problem and offer suggestions for alleviating it.
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The Role of Self-Care in Clinical Ethics Consultation: Clinical Ethicists’ Risk for Burnout, Potential Harms, and What Ethicists Can Do
Janice Firn and Thomas O’Neil
Clinical ethics consultants are inevitably called to participate in and bear witness to emotionally challenging cases. With the move toward the professionalization of ethics consultants, the responsibility to respond to and address difficult ethical dilemmas is likely to fall to a small set of people or a single clinical ethicist. Combined with time constraints, the urgent nature of these cases, and the moral distress of clinicians and staff encountered during consultation, like other healthcare professionals such as physicians and nurses, clinical ethics consultants could risk burnout. If it is true that clinical ethicists are at risk for burnout, an important strategy to avoid burnout is to develop sound self-care practices. This article reviews the goals and skills of ethics consultation and the role-specific reasons that clinical ethicists may be at risk for burnout, and argues that clinical ethicists may need to engage in self-care practices. Strategies to address burnout are reviewed and opportunities for future research are identified.
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Rethinking the Assessment of Decision-Making Capacity and Making Treatment-Related Decisions
Juliana Kan Yin Li
An accurate determination of an individual’s decision-making capacity is fundamental to obtaining informed consent for medical treatment, as it allows clinicians to balance respect for patients’ autonomy with the best interests of patients. Despite the increasing demand for assessments of patients’ capacity, healthcare professionals find this task complex and challenging. Currently, assessments are largely based on patients’ cognitive ability and do not sufficiently take into account other factors that influence patients’ judgment. Furthermore, it is important to assess for and treat modifiable factors that impair decision-making capabilities, and to have guidance on when it is appropriate to delay treatment-related decisions. This article will review current methods for assessing capacity, highlight other factors to consider in the decision-making process, and propose an enhanced framework to guide clinicians in making timely and prudent treatment-related decisions for patients with impaired capacity.
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A Pocketful of Justice: Will Digital Medicine Be Available to the Poor?
Jack Schwartz
Digital medicine—a drug delivered with an ingestion sensor and related data collection system—has potential clinical value, especially for people whose lives are made more disorganized by poverty-related stress. It would be unjust if poor people were effectively barred from this treatment modality. Yet, unless a concerted effort is made to enable access through provision of smartphones to those who cannot afford them, this injustice will aggravate the digital divide in clinical care.
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Roles of the Ethics Consultant: A Response to Vaughan and Colleagues and DeRenzo
Donald S. Kornfeld and Kenneth Prager
We respond to commentaries on our article, “The Clinician as Clinical Ethics Consultant: An Empirical Method of Study,” that appeared in the summer 2019 issue of The Journal of Clinical Ethics.
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Nudging and Clinical Ethics
Do You Believe in Magic? Shove, Don’t Nudge: Advising Patients at the Bedside
Kenneth V. Iserson
Magical thinking, distortions of reality based on fantasy, are pervasive in society and may influence patients’ healthcare decisions. These distortions can “nudge” people to make decisions using System 1 thinking (a heuristic and error-prone decisional pathway that is always “on”), rather than a slower, deliberative, and more labor-intensive process that evaluates evidence (System 2). Physicians have been castigated for subtly nudging their patients toward evidence-based decisions. Yet when patients demonstrate magical thinking in their decision making, physicians have a professional responsibility to do more than nudge; they should shove patients toward decisions that will most likely achieve the healthcare goals they seek.
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Curare Aude—Caring for Patients, with Them
Ian Hargraves, Victor M. Montori, and Jon C. Tilburt
We reflect on Dr. Iserson’s article in this journal, in which he suggests that clinicians must “shove” patients towards appropriate care. While recognizing that overt clinical guidance is part of care, we suggest that its use should be tempered by the guidance’s responsiveness to the human and emotional experience of each patient.
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The Paradoxes of Respectful Guidance: A Comment on Kenneth V. Iserson, “Do You Believe in Magic? Shove, Don’t Nudge: Advising Patients at the Bedside”
Daniel M. Hausman
This commentary argues that the problems identified in Kenneth V. Iserson’s Essay, “Do you Believe in Magic? Shove, Don’t Nudge: Advising Patients at the Bedside,” are perennial difficulties to which there is no single simple solution. In particular, recent work in psychology offers little help to caregivers, who are in the difficult position of guiding the decisions of their patients while respecting them and ultimately deferring to their wishes.
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When Push Comes to Shove—How Should Physicians Respond to Magical Thinking?
Søren Holm
Should doctors shove their patients to choose in ways that are aligned with the patients’ desired goals, when the patients’ choices go wrong because of magical beliefs? I argue that doctors should not shove their patients in this way, but push them towards better and more reflective decision making. We can do this by nudging techniques or by more direct advice giving. If patients still choose wrongly, it is their choice, and doctors have fulfilled their professional, ethical duties.
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Shove and Nudge: A Commentary on Iserson
Kalle Grill
In this comment on Kenneth Iserson’s article, ”Do You Believe in Magic? Shove, Don’t Nudge: Advising Patients at the Bedside,” I discuss the definition of and the moral evaluation of nudging. I propose that using persuasive descriptions and intentionally building trust in patients by one’s demeanor is a form of nudging. I argue that nudging is not necessarily morally problematic, but that it can be controlling and can limit liberty, despite proponents’ claims to the contrary. I agree with Iserson that clinicians should give their patients explicit advice, but add that they should ideally also be aware of the more subtle psychological effects of advice giving.
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Clinical Ethics in Catastrophic Situations—COVID-19
Italy in a Time of Emergency and Scarce Resources: The Need for Embedding Ethical Reflection in Social and Clinical Settings
Federico Nicoli and Alessandra Gasparetto
The COVID-19 virus is severely testing the Italian healthcare system, as the requests for intensive treatment are greater than the real capacity of the system to receive patients. Given this emergency situation, it follows that citizens are limited in their freedom of movement in order to limit infection, and that in hospitals a significant number of critical situations must be faced. This brief contribution aims to offer a reflection on the public and clinical role of the bioethicist: a figure able to promote dialogue between the world of medicine and the community, and to face ethical dilemmas even in emergent clinical settings.
The Journal of Clinical Ethics, Volume
30, Number 4, Winter 2019
At the Bedside
Ethical Issues Posed by Face Transplants
Edmund G. Howe, The Journal of Clinical Ethics 30, no. 4 (Winter 2019):
303-13.
A face transplant is as challenging a surgical procedure as any patient can
undergo. In this introduction I present the medical aspects of this surgery,
the profound ethical issues it raises, and optimal interventions that
clinicians can pursue to help these patients and their loved ones. I then
discuss how to help other kinds of patients and loved ones who confront
similar stresses. I end by presenting a goal that author Sharrona Pearl puts
forth after she studied many face transplant patients. The efforts she urges
should maximize our capacity to see face transplant patients—and anyone—as
they are, as opposed to how they look.
Open access
Features
Self-Inflicted Moral Distress: Opportunity for a
Fuller Exercise of Professionalism
Jeffrey T. Berger, Ann B. Hamric, and Elizabeth Epstein, The Journal of
Clinical Ethics 30, no. 4 (Winter 2019): 314-7.
Moral distress is a phenomenon increasingly recognized in healthcare that
occurs when a clinician is unable to act in a manner consistent with his or
her moral requirements due to external constraints. We contend that some
experiences of moral distress are self-inflicted due to one’s
under-assertion of professional authority, and these are potentially
avoidable. In this article we outline causes of self-inflicted moral
distress and offer recommendations for mitigation.
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The Ethics of Psychosocial Assessment in
Vascularized Composite Allotransplantation:
A Call for Transparency of
Process to Support the Equitable Selection of Patients
Laura L. Kimberly, Michelle W. McQuinn, Arthur L. Caplan, and Nomi C.
Levy-Carrick,
The Journal of Clinical Ethics 30, no. 4 (Winter 2019):
318-330.
As the field of vascularized composite allotransplantation (VCA) continues
to evolve and technological approaches improve, VCA programs must focus on
promoting greater consistency in psychosocial assessment across programs to
support the equitable selection of patients. Based on a summary of published
reports of VCA, we address the ethical considerations raised by the present
heterogeneity of approaches to psychosocial assessment, including weighing
risks and benefits, informed consent and the role of decisional capacity,
and potential or perceived bias in the assessment process. We propose
transparency of process across the field and encourage VCA programs to work
collaboratively to share approaches to psychosocial assessment both pre- and
post-transplant to promote health equity.
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An Algorithmic Approach to Patients Who Refuse Care
But Lack Medical Decision-Making Capacity
Stephanie A. Larson, Sindhuja Surapaneni, Kevin Wack, and Maura George,
The
Journal of Clinical Ethics 30, no. 4 (Winter 2019): 331-7.
Situations in which patients lack medical decision-making (MDM) capacity
raise ethical challenges, especially when the patients decline care that
their surrogate decision makers and/or clinicians agree is indicated. These
patients are a vulnerable population and should receive treatment that is
the standard of care, in line with their the values of their authentic self,
just as any other patient would. But forcing treatment on patients who
refuse it, even though they lack capacity, carries medical and psychological
risks to the patients and the hospital staff. It is also often impractical
to force some treatments, especially in the long term. For example,
independent of the ethical “should” question, how would one force
hemodialysis for the rest of a patient’s life, or force a surgery that
requires weeks of post-operative physical therapy? In this article we
present a novel algorithm that can help clinicians with ethical and
practical decision making, with the goals of achieving the best outcomes for
patients and reducing moral distress for their caretakers and clinicians.
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The Role of Informed Consent for
Thrombolysis in Acute Ischemic Stroke
Amber R. Comer, Teresa M. Damush, Alexia M. Torke, and Linda S. Williams,
The Journal of Clinical Ethics 30, no. 4 (Winter 2019): 338-46.
Although tissue plasminogen activator (tPA) is the only medication approved
by the United States Food and Drug Administration (FDA) for acute ischemic
stroke, there is no consensus about the need for informed consent for its
use. As a result, hospitals throughout the U.S. have varying requirements
regarding obtaining informed consent from patients for the use of tPA,
ranging from no requirement for informed consent to a requirement for verbal
or written informed consent. We conducted a study to (1) determine current
beliefs about obtaining patients’ informed consent for tPA among a large
group of stroke clinicians and (2) identify the ethical, clinical, and
organizational factors that influence tPA consent practices. Semi-structured
interviews were conducted by trained and experienced investigators and
research staff to identify key barriers to implementing acute stroke
services. Part of the interview explored current beliefs and practices
around informed consent for tPA.
This was a multicenter study that included 38 Veterans Health Administration
(VHA) hospital locations. Participants were 68 stroke team clinicians,
serving primarily on the neurology (35 percent) or emergency medicine (41
percent) service.
We conducted thematic analysis based on principles of grounded theory to
identify codes about consent for tPA. We used interpretive convergence to
ensure consistency among the individual investigators’ codes and to ensure
that all of the investigators agreed on coding and themes.
We found that 38 percent of the stroke clinicians did not believe any form
of consent was necessary for tPA, 47 percent thought that some form of
consent was necessary, and 15 percent were unsure. Clinicians who believed
tPA required informed consent were divided on whether consent should be
written (40 percent) or verbal (60 percent). We identified three factors
describing clinicians’ attitudes about consent: (1) legal and policy
factors, (2) ethical factors, and (3) medical factors.
The lack of consensus regarding consent for tPA creates the potential for
delays in treatment, uneasiness among clinicians, and legal liability. The
identified factors provide a potential framework to guide discussions about
developing a standard of care for acquiring the informed consent of patients
for the administration of tPA.
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Family Presence During Cardiopulmonary
Resuscitation
Zohar Lederman, The Journal of Clinical Ethics 30, no. 4 (Winter 2019):
347-55.
Most professional guidelines advocate family presence during resuscitation (FPDR).
Many clinicians, however, are still reluctant to implement this
recommendation. In this article I present the most comprehensive case for
FPDR to date. I review the little that has been written about the ethics of
FPDR, as well as the available empirical evidence. More importantly, I
present and defend three arguments for FPDR: adherence to professional
guidelines, benefit to patients and relatives, and patients’ autonomy. I
conclude with suggestions for future research.
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Case and Analysis from Brigham and Women’s Hospital
Home Intravenous Antibiotic Treatment for a Patient
with Opioid Use Disorder
Daniel A. Solomon, Christin N. Price, and Nicholas Sadovnikoff, The Journal
of Clinical Ethics
30, no. 4 (Winter 2019): 356-9.
Intravenous drug abusers may incur bloodstream infections, in particular
those involving the heart valves, that often require extended courses of
antibiotics, commonly on the order of six weeks.
Conventional wisdom has dictated that even when patients are sufficiently
well to not need ongoing hospitalization, it is unsafe to complete their
antibiotic course in any setting other than in a closely supervised
facility, even if this is contrary to their wishes. The assumption has been
that such patients would be at risk of using their indwelling intravenous
catheter for illicit purposes. Recent advances in the care of patients who
suffer from addiction disorders suggest that when patients receive
state-of-the-art addiction treatment, many may be able to continue their
intravenous antibiotic course unsupervised, at home. This represents a
departure from the parentalistic model of care of impaired patients who are
prone to self-harm, moving towards a model that respects autonomy and trusts
patients who are in recovery to continue their care in a manner that is
self-beneficial.
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Perspectives
Being with and Being for: Flourishing, Suffering, and
Joy in a Ugandan Hospital
Ryan Gillespie, The Journal of Clinical Ethics 30, no. 4 (Winter 2019):
360-75.
This article examines CURE Children’s Hospital of Uganda (CURE), a
faith-based pediatric neurosurgery hospital in Sub-Saharan Africa, as a
unique nexus of Western biomedical and holistic-spiritual healthcare in
their philosophy, staff motivation, and delivery. Offering the concept of a
healing narrative, the essential core of their practice is captured, I
suggest, in the articulation and practice of a healing narrative of human
flourishing, and we might productively think of the ethics of their clinical
approach as premised on being with the patient, understood as mutual
vulnerability and attending to suffering, and being for the patient,
understood as advocating joy within and beyond the clinic. Extrapolating
from this case study, the ideas being with and being for might be added to
our clinical ethical practices and lexicon as we think through alternatives
to a fragmented, compartmentalized biomedical care.
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Family-Centered Culture Care: Touched by an Angel
Jesus A. Hernandez, The Journal of Clinical Ethics 30, no. 4 (Winter
2019): 376-83.
An Asian Indian Hindu family chose no intervention and hospice care for
their newborn with hypoplastic right heart syndrome as an ethical option,
and the newborn expired after five days. Professional nursing integrates
values-based practice and evidence-based care with cultural humility when
providing culturally responsive family-centered culture care. Each person’s
worldview is unique as influenced by culture, language, and religion, among
other factors. The Nursing Team sought to understand this family’s
collective Indian Hindu worldview and end-of-life beliefs, values, and
practices, in view of the unique aspects of the situation while the team
integrated evidence-based strategies to provide family-centered culture
care. Parental care choices conflicted with those of the Nursing Team, and
some nurses experienced moral distress and cultural dissonance when
negotiating their deeply held cultural and religious views to advocate for
the family. The inability to reconcile and integrate a stressful or
traumatic experience impacts nurses’ well-being and contributes to
compassion fatigue. Nurses need to be intentional in accessing interventions
that promote coping and healing and moral resilience. Reflection and
cultural humility, assessment, and knowledge in context, increase
evidence-based culture care and positive outcomes. U.S. society’s views on
ethical behavior continue to evolve, and some may argue that the law should
place more limits on parents’ right to choose or to refuse treatment for
their infants and children. Moral distress can lead to moral resilience and
satisfaction of compassion when nurses provide family-centered culture care
with cultural responsiveness and integrate values-based practice with
evidence-based care, and aim to first do no harm.
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The Journal of Clinical Ethics, Volume 30, Number 3, Fall 2019
At the Bedside
Treating Children Maximally: Practical Applications
Edmund G. Howe, The Journal of Clinical Ethics 30, no. 3 (Fall 2019): 171-82.
Lainie Friedman Ross suggests that clinicians increase our efforts to meet children’s most basic needs in several ways. These include prioritizing, to a greater extent, children’s present and future feelings; placing greater decisional weight on other family members’ needs; spotting earlier threats from surrogate decision makers so that we can better prevent these threatened harms; and finding ways to intervene earlier so that we can allow parental surrogate decision makers to remain in this role. I offer some practical ways in which Ross’s ideas might be applied.
Open access
View a video of the abstract
Features
Better than Best (Interest Standard) in Pediatric Decision Making
Lainie Friedman Ross, The Journal of Clinical Ethics 30, no. 3 (Fall 2019): 183-95.
Healthcare decision making for children has adopted the best interest of the child standard, a principle originally employed by judges to adjudicate child placement in the case of parental death, divorce, or incompetence. Philosophers and medical ethicists have argued whether the best interest principle is a guidance principle (informing parents on how they should make healthcare decisions for their child), an intervention principle (deciding the limits of parental autonomy in healthcare decision making), or both. Those who defend it as only a guidance principle often cite the harm principle as the appropriate intervention principle. In this article, I challenge current use of the best interest principle in pediatric decision making as a guidance principle and as an intervention principle. I propose a model that I call constrained parental autonomy, which focuses on promoting and protecting the child’s primary goods or basic needs. I show that constrained parental autonomy can serve as both a guidance principle and an intervention principle in making decisions. I conclude by examining a case study involving bone marrow donation by a young child to her sister.
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Offering the “Reasonable Interests Standard” in Response to Ross’s Analysis of the Best Interests Standard
D. Micah Hester, The Journal of Clinical Ethics 30, no. 3 (Fall 2019): 196-200.
Ross’s argument against the best interest standard (BIS) makes a clear case for the problems of the BIS, and she also notes challenges with such notions as the harm principle. In light of these critiques, Ross champions her longstanding pediatric moral norm for decision making, constrained parental autonomy (CPA). This article argues that while Ross’s critique of the traditional accounts of the BIS is correct, her solution still raises some concerns. As such, I offer the “reasonable interests standard” as a way of addressing what I see as weaknesses in both the BIS and CPA.
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Guidance and Intervention Principles in Pediatrics: The Need for Pluralism
Mark Christopher Navin and Jason Adam Wasserman, The Journal of Clinical Ethics 30, no. 3 (Fall 2019): 201-6.
Two core questions in pediatric ethics concern when and how physicians are ethically permitted to intervene in parental treatment decisions (intervention principles), and the goals or values that should direct physicians’ and parents’ decisions about the care of children (guidance principles). Lainie Friedman Ross argues in this issue of The Journal of Clinical Ethics that constrained parental autonomy (CPA) simultaneously answers both questions: physicians should intervene when parental treatment preferences fail to protect a child’s basic needs or primary goods, and both physicians and parents should be guided by a commitment to protect a child’s basic needs and primary goods. In contrast, we argue that no principle—neither Ross’s CPA, nor the best interest standard or the harm threshold—can serve as both an intervention principle and a guidance principle. First, there are as many correct intervention principles as there are different kinds of interventions, since different kinds of interventions can be justified under different conditions. Second, physicians and parents have different guidance principles, because the decisions physicians and parents make for a child should be informed by different values and balanced by different (potentially) conflicting commitments.
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Decision Making on Behalf of Children: Understanding the Role of the Harm Principle
Douglas S. Diekema, The Journal of Clinical Ethics 30, no. 3 (Fall 2019): 207-12.
Thirty years ago, Buchanan and Brock distinguished between guidance principles and interference principles in the setting of surrogate decision making on behalf of children and incompetent adult patients. They suggested that the best interest standard could serve as a guidance principle, but was insufficient as an interference principle. In this issue of The Journal of Clinical Ethics, Ross argues that the best interest standard can serve as neither a guidance or interference principle for decision making on behalf of children, but that her model of constrained parental autonomy can serve as both. I will argue that Buchanan and Brock were correct that a single model or standard cannot serve as both a guidance and interference principle in pediatrics and that the best interest standard is a sufficient guidance principle. The harm principle fulfills the conditions necessary for an interference principle, at least insofar as deciding when state intervention to interfere with parental decision making is justified.
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When Better Isn’t Good Enough: Commentary on Ross’s “Better than Best (Interest Standard) in Pediatric Decision Making”
Erica K. Salter, The Journal of Clinical Ethics 30, no. 3 (Fall 2019): 213-7.
In this commentary, the author discusses two strengths and two weaknesses of “Better than Best (Interest Standard) in Pediatric Decision-Making,” in which Lainie Friedman Ross critiques the best interest standard and proposes her own model of constrained parental autonomy (CPA) as a preferable replacement for both an intervention principle and a guidance principle in pediatric decision making. The CPA’s strengths are that it detaches from the language and concept of “best” and that it better respects the family as a distinct and intimate decision-making unit. The first weakness of the framework, as an intervention principle, is that because it imports a Rawlsian understanding of basic interests, it neglects certain populations of children (for example, children with intellectual disabilities). The second weakness is that, as a guidance principle, it is unclear what actual guidance the CPA is positioned to offer and how that guidance would be justified. To conclude, this commentary offers suggestions for what should be required of both an intervention principle and a guidance principle in pediatric decision making.
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Constrained Parental Autonomy and the Interests of Children in Non-Intimate Families
Erin Paquette, The Journal of Clinical Ethics 30, no. 3 (Fall 2019): 218-22.
Children’s age and developmental capacity leave them incapable of making medical decisions for themselves. Decisions for children are traditionally made under the best interest standard. Ross calls into question whether the best interest standard can function as both a guidance and intervention principle, able to be applied across the spectrum of pediatric decision making. Ross describes constrained parental autonomy as an alternative model, arguing that it affords parents the ability to make decisions within the context of their family while upholding a child’s current and future interests. Although the model provides a robust framework for intrafamilial decision making, I question whether it can be broadly applied to children living in non-intimate families.
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The Best Interest Standard Is the Best We Have: Why the Harm Principle and Constrained Parental Autonomy Cannot Replace the Best Interest Standard in Pediatric Ethics
Johan C. Bester, The Journal of Clinical Ethics 30, no. 3 (Fall 2019): 223-31.
While the best interest standard (BIS) enjoys wide endorsement as ethical and decision-making standard in pediatrics, it has been criticized as vague and indeterminate. Alternate decision-making standards have been proposed to replace or augment the BIS, notably the harm principle (HP) and constrained parental autonomy (CPA) model. In this edition of The Journal of Clinical Ethics, Lainie Friedman Ross argues that CPA is a better standard than the BIS or the HP as both guide and limiter in pediatrics. In response, I review the important work done by the BIS in pediatrics, and argue that neither the HP nor the CPA can take over these functions or replace the BIS. Among other things I argue: (1) The BIS provides more robust protections for the moral claims of children. (2) The CPA model and the HP do not resolve the indeterminacy and vagueness present in complex medical situations, and the BIS is better suited to deal with this vagueness and indeterminacy. (3) The BIS is a general principle of medical ethics with special application in pediatrics; it fits seamlessly into the system of medical ethics and fulfills many functions within pediatrics. The HP and the CPA model do not fit in so readily within medical ethics, and are not equipped to take over the functions of the BIS.
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In Further Defense of “Better than Best (Interest)”
Lainie Friedman Ross, The Journal of Clinical Ethics 30, no. 3 (Fall 2019): 232-9.
In their thoughtful critiques of my article “Better than Best (Interest Standard) in Pediatric Decision Making,” my colleagues make clear that there is little consensus on what is (are) the appropriate guidance and intervention principles in pediatric decision making, and disagree about whether one principle can serve both functions. Hester proposes his own unitary principle, the reasonable interest standard, which, like the best interest standard from which it is derived, encourages parents to aim for the great, although Hester tempers it with a pragmatic principle that allows consideration of cultural/family values and practical/financial/social/psychological circumstances. I reject the aspirational guidance principle because it is too demanding, and I also reject the notion that this pragmatic condition “gives permission for others to extol parents to give reasons” for their decisions, because it allows too much interference into the family and its decision making. Whereas the other respondents and I focus on whether and when third parties should intervene in the doctor-patient (surrogate) relationship, Navin and Wasserman mistakenly redefine intervention to include physicians’ behaviors that attempt to influence parents, ignoring the integral role of shared decision making—a bidirectional discussion in which physicians help patients (surrogates) select among reasonable medical options through education, and, when necessary, motivation or persuasion. Diekema and Salter focus on the harm principle for intervention, ignoring other conditions in which intervention may be appropriate and institutions other than the state that may intervene. Paquette’s overly narrow interpretation of who has positive obligations to children fails to ensure that a child’s basic interests and needs are met. Finally, Bester claims that the “need to choose the available option that best promotes or protects the child’s basic interests” is akin to a focus on best interests. But constrained parental autonomy does not require parents to choose the option that best promotes a child’s basic interests. Rather, it requires respect for broad parental discretion about how they raise their child unless their decisions fail to promote the child’s basic needs and interests.
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Pediatric Decision Making: Ross, Rawls, and Getting Children and Families Right
Norman Quist, The Journal of Clinical Ethics 30, no. 3 (Fall 2019): 240-6.
What process ought to guide decision making for pediatric patients? The prevailing view is that decision making should be informed and guided by the best interest of the child. A widely discussed structural model proposed by Buchanan and Brock focuses on parents as surrogate decision makers and examines best interests as guiding and/or intervention principles. Working from two recent articles by Ross on “constrained parental autonomy” in pediatric decision making (which is grounded in the Buchanan and Brock model), I discuss (supportively) features of Ross’s effort vis-a-vis the best interest standard. I argue that any pediatric decision-making model that brackets or formally limits an engagement with the child patient assumes too much. Further, any model that under appreciates the place of parents and their autonomy, and the dynamic parent-child relationship, misses an opportunity to broaden the clinical encounter by considering questions of justice for the child (Rawls) and within a family (Ross). In this context, I focus on the child’s emerging and ongoing emotional and intellectual development and autonomy—their capabilities and identifying primary goods.
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A Working Un-Conference
A Working Un-Conference to Advance Innovations Among Clinical Ethics Programs
Hilary Mabel and Paul J. Ford, The Journal of Clinical Ethics 30, no. 3 (Fall 2019): 247-50.
In an effort to create new synergies to fill gaps in evaluation of value, assessment of quality, and definition of roles in clinical ethics programs we convened a meeting entitled Innovations in Clinical Ethics: A Working Un-Conference (the Un-Conference) in August 2018. The Un-Conference was conceived to be a working event aimed at promoting cross pollination and idea generation for innovative practices in clinical ethics. The event was attended by 95 individuals from 62 institutions, representing a wide diversity of healthcare systems, who believed in the concept and brought their enthusiasm and expertise to share with others. As a product of the Un-Conference, whitepaper groups developed summaries and broad overviews of areas that need to be further addressed within our field. The whitepapers are being published in this issue of The Journal of Clinical Ethics. The first three whitepapers highlight the broad themes of demonstrating value to the institution, quality assessment, and emerging roles for clinical ethics programs and ethicists. The final whitepaper offers guidance to clinical ethicists engaged in pediatric ethics work and, in conversation with the emerging roles article, thoughtfully reflects on the role of pediatric ethicists.
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Clarifying a Clinical Ethics Service’s Value, the Visible and the Hidden
Laura Guidry-Grimes, Marika Warren, Hannah I. Lipman, Kelly Kent,
Kaarkuzhali Babu Krishnamurthy, Arlene M. Davis, Thomas May, Marycon Chin Jiro,
and Jane Jankowski, The Journal of Clinical Ethics 30, no. 3 (Fall 2019): 251-61.
Our aim in this article is to define the difficulties that clinical ethics services encounter when they are asked to demonstrate the value a clinical ethics service (CES) could and should have for an institution and those it serves. The topic emerged out of numerous related presentations at the Un-Conference hosted by the Cleveland Clinic in August 2018 that identified challenges of articulating the value of clinical ethics work for hospital administrators. After a review these talks, it was apparent that the field of clinical ethics may be at a crisis of sorts due to increased pressure to provide explicit measures to healthcare institutions to concretely demonstrate that CESs make a valuable difference in healthcare delivery. In this article we grapple with how to satisfy the need for demonstrable value in a field in which metrics alone may not capture the scope of clinical ethics practice. We suggest that capturing the value of a CES has been difficult because the benefits of ethics consultation may be overt or attributable to the CES, but are often hidden due to the systems-level and process-oriented nature of clinical ethics work. Part of the difficulty in demonstrating the value of CESs is capturing and conveying all of the ways the integration of a CES throughout an institution positively affects patients, families, visitors, healthcare professionals, administrators, and the institution itself. Our aim is to (1) elucidate the multifaceted value added by a CES, including value that tends to be hidden and (2) suggest how to demonstrate value to others in a way that is not simplistic or reductionistic.
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Emerging Roles of Clinical Ethicists
Jeffrey S. Farroni, Emma Tumilty, Debjani Mukherjee, Susan McCammon, David M. Chooljian, and Margot M. Eves, The Journal of Clinical Ethics 30, no. 3 (Fall 2019): 262-9.
Debates regarding clinical ethicists’ scope of practice are not novel and will continue to evolve. Rapid changes in healthcare delivery, outcomes, and expectations have necessitated flexibility in clinical ethicists’ roles whereby hospital-based clinical ethicists are expected to be woven into the institutional fabric in a way that did not exist in more traditional relationships. In this article we discuss three emerging roles: the ethicist embedded in the interdisciplinary team, the ethicist with an expanded educational mandate, and the ethicist as a therapeutic presence in the patient care space. Such expanded capacities offer more robust, positive contributions to institutional culture, stakeholders’ relationships, and patient-centered care.
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Pediatric Ethics Consultation: Practical Considerations for the Clinical Ethics Consultant
Caroline A. Buchanan, Johan C. Bester, Bethany Bruno, Clare Delany, Kerri O. Kennedy,
Tracy Koogler, Nneka O. Sederstrom, Jessica A. Moore, and Kathryn L. Weise,
The Journal of Clinical Ethics 30, no. 3 (Fall 2019): 270-83.
Clinical ethics consultants face a wide range of ethical dilemmas that require broad knowledge and skills. Although there is considerable overlap with the approach to adult consultation, ethics consultants must be aware of differences when they work with infant, pediatric, and adolescent cases. This article addresses unique considerations in the pediatric setting, reviews foundational theories on parental authority, suggests practical approaches to pediatric consultation, and outlines current available resources for clinical ethics consultants who wish to deepen their skills in this area.
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Comprehensive Quality Assessment in Clinical Ethics
Thomas V. Cunningham, Andrea Chatburn, Cynthia Coleman, Evan DeRenzo, Kristin Furfari, John Frye, III, Avery C. Glover, Matthew Kenney, Nico Nortjé, Janet Malek, Mark Repenshek, Flora Sheppard, and Joshua S. Crites, The Journal of Clinical Ethics 30, no. 3 (Fall 2019): 284-96.
Scholars and professional organizations in bioethics describe various approaches to “quality assessment” in clinical ethics. Although much of this work represents significant contributions to the literature, it is not clear that there is a robust and shared understanding of what constitutes “quality” in clinical ethics, what activities should be measured when tracking clinical ethics work, and what metrics should be used when measuring those activities. Further, even the most robust quality assessment efforts to date are idiosyncratic, in that they represent evaluation of single activities or domains of clinical ethics activities, or a range of activities at a single hospital or healthcare system. Countering this trend, iin this article we propose a framework for moving beyond our current ways of understanding clinical ethics quality, toward comprehensive quality assessment. We first describe a way to conceptualize quality assessment as a process of measuring disparate, isolated work activities; then, we describe quality assessment in terms of tracking interconnected work activities holistically, across different levels of assessment. We conclude by inviting future efforts in quality improvement to adopt a comprehensive approach to quality assessment into their improvement practices, and offer recommendations for how the field might move in this direction.
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Letters
Letter: Words Matter in the Lives of Transgender Youth: Response to “Family Discordance Regarding Fertility Preservation for a Transgender Teen: An Ethical Case Study”
Beth A. Clark and Alice Virani, The Journal of Clinical Ethics 30, no. 3 (Fall 2019): 297-8.
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Letter: In Response to “Words Matter in the Lives of Transgender Youth”
Gwendolyn P. Quinn, Amani Sampson, Lisa Campo-Engelstein, and Leena Nahata, The Journal of Clinical Ethics 30, no. 3 (Fall 2019): 299-300.
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The Journal of Clinical Ethics, Volume 30, Number 2, Summer 2019
At the Bedside
When Adolescents May Die
Edmund G. Howe,The Journal of Clinical Ethics 30, no. 2 (Summer 2019): 77-88.
In this article I will discuss how clinicians might best treat adolescents who may die. I initially discuss these patients’ cognition, emotional tendencies, and sensitivity to interpersonal cues. I next discuss their parents’ feelings of loss and guilt and their clinicians’ risk of imposing their own moral views without knowing this. I then address the practical concerns of helping these patients gain or regain resilience and to identify strengths they have had in the past. I finally explore who, among staff, might be best able to do this. I highlight as the main goal that patients, their parents, and ideally also their clinicians are able to come to agree on the best course the patients should take.
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Features
The States as Laboratories: Regulation of Decisions for Incapacitated Patients
Erin S. DeMartino and Joshua A. Rolnick, The Journal of Clinical Ethics 30, no. 2 (Summer 2019): 89-95.
In the United States, patients who lose the ability to make their own medical decisions are subject to the laws of their respective states. Laws governing advance directives and physician orders for life-sustaining therapies (POLST), and establishing a surrogate in the absence of an advance directive, vary substantially by jurisdiction. This article traces those laws from their origins, describes current practices and challenges with their application to patient care, and considers future avenues for ethics research and legislative reform.
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The Clinician as Clinical Ethics Consultant: An Empirical Method of Study
Donald S. Kornfeld and Kenneth Prager, The Journal of Clinical Ethics 30, no. 2 (Summer 2019): 96-108.
Some 30 years ago the role of the clinical ethics consultant (CEC) was formalized. At the time, the perception of the role differed between two groups serving in that capacity, clinicians and nonclinicians. Differences in their roles reflected their training and experience.
These divergent views were resolved semantically by designating the role of the CEC as “ethics facilitation.” In practice the different perspectives have remained. However, the subsequent published literature on clinical ethics consultation has not adequately reflected the activity of the clinician as a CEC.
There have been recurring unanswered calls for the acquisition of empirical data on the nature of the problems that prompt ethics consultation requests and the functions required to address them. The authors introduce a template that provides a means to acquire such data for clinician ethicists. A similar instrument could be constructed to reflect the role of the nonclinician ethicist serving in that capacity.
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The ASBH Approach to Certify Clinical Ethics Consultants Is Both Premature and Inadequate
Mark Siegler, The Journal of Clinical Ethics 30, no. 2 (Summer 2019): 109-16.
In November 2018 the American Society for Bioethics and Humanities (ASBH) administered the first Healthcare Ethics Consultant Certification examination to 138 candidates, 136 of whom (98.5 percent) passed and were “certified” as “healthcare ethics consultants.” I believe this certification process is both premature and inadequate.
Certification for ethics consultants is premature because, as Kornfeld and Prager state repeatedly in their article in this issue of The Journal of Clinical Ethics, “The Clinician as Clinical Ethics Consultant: An Empirical Method of Study,” there is a lack of “empirical data on the nature of the problems that prompt ethics consultation requests and on the functions required to address them.” These authors proceed to provide a model for the kind of empirical data collection that is needed.
Even more relevant, the ASBH model that certifies clinical ethics consultants is inadequate. First, it is inappropriate for a nonclinical organization such as the ASBH to claim the right to certify a clinical process, ethics consultation, involving patients and health professionals. Second, the current certification process requires only a written examination in contrast to the two-step quality attestation process proposed in 2013 by Eric Kodish, MD, and 11 other senior members of the ASBH, including its then president.
Third and most importantly, the eligibility criteria for being certified to work on hospital units and to make clinical recommendations for patients and families are minimal and insufficient. The only stated requirements are a bachelor’s degree and 400 hours of healthcare ethics consulting experience. By contrast, practicing physicians and nurses train for many years to gain clinical experience that enables them to apply clinical ethical standards in the care and management of all inpatients and outpatients, not just the small percent for whom an ethics consultation is requested.
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Roles of the Clinical Ethics Consultant: A Response to Kornfeld and Prager
David Michael Vaughan, Rebecca Permar, Corisa Rakestraw, Ryan Hart, Leslie C. Griffin, and William J. Winslade, The Journal of Clinical Ethics 30, no. 2 (Summer 2019): 117-20.
We believe that clinical ethics consultants (CECs) should offer advice, options, and recommendations to attending physicians and their teams. In their article in this issue of The Journal of Clinical Ethics, however, Kornfeld and Prager give CECs a somewhat different role. The CEC they describe may at times be more aptly understood as a medical interventionist who appropriates the roles of the attending physician and the medical team than as a traditional CEC. In these remarks, we distinguish the role of the CEC from that of the physician, in contrast to some of these authors’ recommendations, which confuse the two roles.
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Moving Towards a New Hospital Model of Clinical Ethics
Evan G. DeRenzo, The Journal of Clinical Ethics 30, no. 2 (Summer 2019): 121-7.
The role of clinical ethics consultant in hospitals was created about 30 years ago. Since that time, two very different models for clinical ethics consultation, and who should perform it, have arisen: clinician ethicists and nonclinician ethicists, or bioethicists. Neither model provides everything that hospitals might need, and both include perspectives that are not ideal for hospital practice. It’s time for a new model, one designed specifically to meet the needs of hospital patients, one we might call the hospital model of clinical ethics (HMCE).
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Elements of an Ethics Consultation
John C. Fletcher and Edward M. Spencer, The Journal of Clinical Ethics 30, no. 2 (Summer 2019): 128-30.
In the context of all of the discussion about “Fletcherian” ethics consultation, we’re including this description of ethics consultation for clarity and in deference to the work of John C. Fletcher. It’s reprinted from the third edition of Fletcher’s Introduction to Clinical Ethics.
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Physicians’ Perspectives on Adolescent and Young Adult Advance Care Planning: The Fallacy of Informed Decision Making
Jennifer S. Needle, Cynthia Peden-McAlpine, and Joan Liaschenko, The Journal of Clinical Ethics 30, no. 2 (Summer 2019): 131-42.
Advance care planning (ACP) is a process that seeks to elicit patients’ goals, values, and preferences for future medical care. While most commonly employed in adult patients, pediatric ACP is becoming a standard of practice for adolescent and young adult patients with potentially life-limiting illnesses. The majority of research has focused on patients and their families; little attention has been paid to the perspectives of healthcare providers (HCPs) regarding their perspectives on the process and its potential benefits and limitations. Focus groups were conducted with 15 physicians as part of a larger study of adolescent and young adult ACP in hematopoietic stem cell transplant (HSCT) patients. This study identified two categories important to the utility of ACP in pediatric HSCT patients; (1) the temporal context of ACP and decision making and (2) the limitations of pediatric ACP, with subcategories identified as (a) embodied and witnessed knowing, (b) the impact of clinical cascades—when the treatment of one organ system creates complications in another system that needs to be treated—and a creation of a “new normal” following complications of illness and its treatment in the pediatric intensive care unit (PICU), (c) the balancing of adolescents’ autonomy with their capacity to make informed medical decisions, and (d) the epistemological frames that differ between HCP and patients and their families. These findings support ACP in adolescent and young adult HSCT patients, with a number of implications for practice as this process becomes more common.
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Fertility Preservation for a Teenager with Differences (Disorders) of Sex Development: An Ethics Case Study
Lisa Campo-Engelstein, Diane Chen, Arlene B. Baratz, Emilie K. Johnson, and Courtney Finlayson, The Journal of Clinical Ethics 30, no. 2 (Summer 2019): 143-53.
Fertility preservation has become more common for various populations, including oncology patients, transgender individuals, and women who are concerned about age-related infertility. Little attention has been paid to fertility preservation for patients with differences/disorders of sex development (DSD). Our goal in this article is to address specific ethical considerations that are unique to this patient population. To this end, we present a hypothetical DSD case. We then explore ethical considerations related to patient’s age, risk of cancer, concern about genetic transmission of a DSD condition to children, co-occurring gender dysphoria, and access to experimental fertility preservation procedures. Given the limitations of current technologies, we recommend offering fertility preservation to individuals living with DSD using an informed decision-making approach that instills realistic expectations and minimizes the potential for false hope. Finally, we conclude with practical recommendations for this case based on the ethical considerations.
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Medical Education and Practice
Perils of the Hidden Curriculum: Emotional Labor and “Bad” Pediatric Proxies
Margaret Waltz, R. Jean Cadigan, Benny Joyner, Paul Ossman, and Arlene Davis, The Journal of Clinical Ethics 30, no. 2 (Summer 2019): 154-62.
Today’s medical training environment exposes medical trainees to many aspects of what has been called “the hidden curriculum.” In this article, we examine the relationship between two aspects of the hidden curriculum, the performance of emotional labor and the characterization of patients and proxies as “bad,” by analyzing clinical ethics discussions with resident trainees at an academic medical center. We argue that clinicians’ characterization of certain patients and proxies as “bad,” when they are not, can take an unnecessary toll on trainees’ emotions. We conclude with a discussion of how training in ethics may help uncover and examine these aspects of the hidden curriculum.
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Consent Obtained by Residents: Informed by the Uninformed?
Alan R. Tait, The Journal of Clinical Ethics 30, no. 2 (Summer 2019): 163-6.
Informed consent is central to the bioethical principle of respect for persons, a process that involves a discussion between the physician and patient with disclosure of information sufficient to allow the patient to make an informed decision about her or his care. However, despite the importance of informed consent in clinical practice, the process is often ritualized, perfunctory, and performed by individuals with little or no training in the consent process. This article discusses the lack of medical students’ and residents’ training in informed consent and questions the practice of allowing untrained residents and surrogates to obtain consent from patients.
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The Journal of Clinical Ethics, Volume 30, Number 1, Spring 2019
At the Bedside
The Edge-of-the-Field of Clinical Ethics Now, After 30 Years: Does Research Ethics Show Us the Way?
Edmund D. Howe, The Journal of Clinical Ethics 30, no. 1 (Spring 2019): 3-16.
There have been many advances in clinical ethics over the last three decades, since The Journal of Clinical Ethics first came about. This issue of JCE notes some of them. Fortuitously for this goal, new requirements for doing research just have been published, and the leading United States research ethics meeting has just concluded. The conference offered edge-of-the-field presentations in research ethics, and indicates where we should go beyond this edge: what we still have to do. In this article I build upon foundations to explore what they imply for what we should do now in our clinics.
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Special Section: 30 Years of The Journal of Clinical Ethics
Clinical Medical Ethics: Its History and Contributions to American Medicine
Mark Siegler, Guest Editor, The Journal of Clinical Ethics 30, no. 1 (Spring 2019): 17-26.
In 1972, I created the new field of clinical medical ethics (CME) in the
Department of Medicine at the University of Chicago. In my view, CME is an
intrinsic part of medicine and is not a branch of bioethics or philosophical
ethics or legal ethics. The relationship of patients with medically trained
and licensed clinicians is at the very heart of CME. CME must be practiced
and applied not by nonclinical bioethicists, but rather by licensed
clinicians in their routine, daily encounters with inpatients and
outpatients. CME
addresses many clinical issues such as truth-telling, informed consent,
confidentiality, surrogate decision making, and end-of-life care, while also
encouraging personal, humane, and compassionate interactions between
experienced clinicians and patients.
The goals of CME are to improve patient care and outcomes by
helping physicians and other health professionals identify and respond to
clinical-ethical challenges that arise in the ordinary care of patients. As
Edmund Pellegrino, Peter A. Singer, and I wrote in the first issue of The
Journal of Clinical Ethics, 30 years ago: “The central goal of CME is to
improve the quality of patient care by identifying, analyzing, and
contributing to the resolution of ethical problems that arise in the routine
practice of clinical medicine.”1 Similar to cardiology and oncology
consultations, ethics consultations are a small component of a much larger
field, and the process of consultations is certainly not at the core of
cardiology or oncology or CME.
In this article, I intend to discuss the origins of the field
of CME, its goals and methods, the relationship between the broad field of
CME and the much narrower practice of ethics consultation, the contributions
of the MacLean Center at the University of Chicago in developing the field
of CME, and, finally, how CME has improved the practice of medicine in the
United States.
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Once and Future Clinical Neuroethics: A History of What Was and What Might Be
Joseph J. Fins, The Journal of Clinical Ethics 30, no. 1 (Spring 2019): 27-34.
While neuroethics is generally thought to be a modern addition to the broader field of bioethics, this subdiscipline has existed in clinical practice throughout the course of the 20th century. In this essay, Fins describes an older tradition of clinical neuroethics that featured such physician-humanists as Sir William Osler, Wilder Penfield, and Fred Plum, whose work and legacy exploring disorders of consciousness is highlighted. Their normative work was clinically grounded and focused on the needs of patients, in contrast to modern neuroethics, which is more speculative and distant from the lived reality of the clinic. Using recent developments in the diagnosis and treatment of disorders of consciousness, and the history of the vegetative and minimally conscious states, Fins asks why modern neuroethics has taken this turn and what can be done to restore clinical neuroethics to a more proportionate place in the field.
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Clinical Ethics in Pediatrics: An International Perspective
John D. Lantos, Sarosh Saleem, Fajar Raza, Janicke Syltern, Erwin J. Khoo, Arpana Iyengar, Priya Pais, Jagdish Chinnappa, Pablo Lezama-Del Valle, and André Kidszun, The Journal of Clinical Ethics 30, no. 1 (Spring 2019): 35-45.
In this article, we first review the development of clinical ethics in pediatrics in the United States. We report that, over the last 40 years, most children’s hospitals have ethics committees but that those committees are rarely consulted. We speculate that the reasons for the paucity of ethics consults might be because ethical dilemmas are aired in other venues. The role of the ethics consultant, then, might be to shape the institutional climate and create safe spaces for the discussion of difficult and sometimes contentious issues. Finally, we report how pediatric clinical ethics has evolved differently in a number of other countries around the world.
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Reflection of a Physician-Writer: On Why I Write
Ranjana Srivastava, The Journal of Clinical Ethics 30, no. 1 (Spring 2019): 46-48.
In the course of their increasingly busy lives, physicians encounter many emotions that move and challenge them. Writing is a valuable tool for self-expression and making sense of the world. Physicians are often concerned about patients’ confidentiality and not upsetting their colleagues, but writing can be one of the best ways of sustaining a healthy and meaningful career and effecting change.
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“Clinical” Surgical Ethics
Peter Angelos, The Journal of Clinical Ethics 30, no. 1 (Spring 2019): 49-55.
The practice of surgery requires consideration of a number of specific aspects of clinical medical ethics that are different from those most influential in other areas of medical care. The nature of surgical care alters the sense of responsibility that surgeons feel for their actions and also alters the relationship between surgeons and patients. Because surgical care requires patients to place such great trust in their surgeons, surgical informed consent must emphasize the importance of that trust. Surgeons must use innovative means to solve individual patient problems even if the result is a novel operation. Surgical procedures may be altered due to the unexpected findings in the operating room and therefore surgeons must have considered how to respond in such situations. The future of surgical practice will inevitably lead to increasing ethical concerns in maintaining the ethical dimension of surgery, in allowing autonomy for trainees while maintaining patients’ safety, and in balancing surgical risks of prophylactic surgery with the genetic predisposition to develop cancer.
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Ethics and Evidence
Daniel P. Sulmasy, The Journal of Clinical Ethics 30, no. 1 (Spring 2019): 56-66.
Towards the end of the last century, bioethics underwent an “empirical turn,” characterized by an increasing number of empirical studies about issues of bioethical concern. Taking a cue from the evidence-based medicine movement, some heralded this as a turn toward evidence-based ethics. However, it has never been clear what this means, and the strategies and goals of evidence-based ethics remain ambiguous. In this article, the author explores what the potential aims of this movement might be, ultimately arguing that, while the development of good empirical research can and should aid in ethical deliberation, one ought to avoid assuming or suggesting that empirical studies themselves determine normative prescriptions and proscriptions. The limits of the use of empirical studies in bioethics are explored in detail, and 10 potential ways that such studies can soundly contribute to bioethics are described. Good ethics depends upon sound facts, but ethics cannot be based on evidence alone.
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Cardiopulmonary Resuscitation, Informed Consent, and Rescue: What Provides Moral Justification for the Provision of CPR?
Johan Bester and Eric Kodish, The Journal of Clinical Ethics 30, no. 1 (Spring 2019): 67-73.
Questions related to end-of-life decision making are common in clinical ethics and may be exceedingly difficult. Chief among these are the provision of cardiopulmonary resuscitation (CPR) and do-not-resuscitate orders (DNRs). To better address such questions, clarity is needed on the values of medical ethics that underlie CPR and the relevant moral framework for making treatment decisions. An informed consent model is insufficient to provide justification for CPR. Instead, ethical justification for CPR rests on the rule of rescue and on substituted interest judgments. Patients’ known wishes and values are relevant, particularly in protecting them from unwanted CPR. Clinicians should rescue patients with the means at their disposal, as a prima facie moral imperative, unless there are compelling reasons to refrain. We present a moral framework for making decisions regarding CPR and DNR.
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The Journal of Clinical Ethics, Volume 29, Number 4, Winter 2018
At the Bedside
Helping Patients to Achieve What They Find Most Meaningful in Life
Edmund G. Howe, The Journal of Clinical Ethics 29, no. 4 (Winter 2018): 247-60.
Patients’ and families’ greatest need is often to do what for them is most meaningful. This may be, for example, their religion, their family, or their doing good for others. This piece will explore ways in which care providers may help maximize these ends. Paradigms offered will include Jehovah’s Witness patients needing kidney transplants, a transgender adolescent wanting his sperm preserved, care providers’ deciding whether to disclose that a deceased organ donor had HIV, and care providers seeking to do good for children profoundly impaired and adults who feel shame for just existing.
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Familial Discordance Regarding Fertility Preservation for a Transgender Teen: An Ethical Case Study
Gwendolyn P. Quinn, Amani Sampson, and Lisa Campo-Engelstein, The Journal of Clinical Ethics 29, no. 4 (Winter 2018): 261-5.
A 16-year-old adolescent who identifies as transgender wishes to consider fertility preservation prior to the use of gender-affirming hormones. The adolescent’s parents are divorced, and one parent supports fertility preservation while the other does not. This case explores the minor’s future reproductive autonomy and parental decision making in a field where there is limited evidence of known harms and benefits to the use of fertility preservation in the transgender population and about future potential regret from lack of consideration of fertility preservation during the prime window of opportunity. This case is created from a composite of cases seen at multiple institutions.
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Proxy Consent by a Physician When a Patient’s Capacity Is Equivocal: Respecting a Patient’s Autonomy by Overriding the Patient’s Ostensible Treatment Preferences
Abraham Graber, Carolyn April, and Michael D. April, The Journal of Clinical Ethics 29, no. 4 (Winter 2018): 266-75.
Respect for patients’ autonomy has taken a central place in the practice of medicine. Received wisdom holds that respect for autonomy allows overriding a patient’s treatment preferences only if the patient has been found to lack capacity. This understanding of respect for autonomy requires a dichotomous approach to assessing capacity, whereby a patient must be found either to have full capacity to make some particular treatment decision or must be found to lack capacity to make that decision. However, clinical reality is more complicated, and, in borderline cases, different physicians may arrive at disparate judgments of capacity. In such cases, when capacity-determination protocols fail to achieve consensus, physicians would benefit from guidance regarding the clinical decision-making process necessary to elucidate the most ethically sound course of action. This article considers one such case and argues that, in a limited number of cases, respect for autonomy may require overriding a patient’s stated treatment preference when a capacity determination is equivocal, even though the patient has not clearly demonstrated a lack of capacity.
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Training to Increase Rater Reliability When Assessing the Quality of Ethics Consultation Records with the Ethics Consultation Quality Assessment Tool (ECQAT)
Robert Allan Pearlman, David Alfandre, Barbara L. Chanko, Mary Beth Foglia, and Kenneth A. Berkowitz, The Journal of Clinical Ethics 29, no. 4 (Winter 2018): 276-84.
The Ethics Consultation Quality Assessment Tool (ECQAT) establishes standards by which the quality of ethics consultation records (ECRs) can be assessed. These standards relate to the ethics question, consultation-specific information, ethical analysis, and recommendations and/or conclusions, and result in a score associated with one of four levels of ethics consultation quality. For the ECQAT to be useful in assessing and improving the quality of healthcare ethics consultations, individuals who rate the quality of ECRs need to be able to reliably use the tool.
We developed a short course to train ethics consultants in using the ECQAT, and evaluated whether the participants (1) achieved an acceptable level of calibration in matching expert-established quality scores for a set of ethics consultations, and (2) were satisfied with the course. We recruited 28 ethics consultants to participate in a virtual, six-session course. At each session participants and faculty reviewed, rated, and discussed one to two ECRs. The participants’ calibration in matching expert-established quality scores improved with repeated exposure at all levels of ethics consultation quality. Participants were generally more accurate when assessing consultation quality at the dichotomous level of “acceptable” (scores of three or four) versus “unacceptable” (scores of one or two) than they were with a more specific score. Participants had higher rates of accuracy with the extreme ratings of “strong” (level four) or “poor” (level one). Although participants were highly satisfied with the course, only a minority of participants achieved the prespecified acceptable level of calibration (that is, 80 percent or greater accuracy between their score and expert-established scores). These results suggest that ECQAT training may require more sessions or need modification in the protocol to achieve higher reliability in scoring. Such trainings are an important next step in ensuring that the ECQAT is a tool that can be used to promote improvement in ethics consultation quality.
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Technical Considerations for Implementation of Tele-Ethics Consultation in the Intensive Care Unit
Laura S. Johnson. David M. Brennan, and Nneka O. Sederstrom, The Journal of Clinical Ethics 29, no. 4 (Winter 2018): 285-90.
Background: Robust ethics consultation services cannot be sustained by all hospitals; consultative service from a high-volume center via teleconferencing is an attractive alternative. This pilot study was conceived to explore the feasibility and understand the practical implications of offering such a service.
Methods: High-definition videoconferencing was used to provide real-time interaction between the rounding clinicians and a remote clinical ethicist. Data collection included: (1) evaluation of the hardware and software required for teleconferencing, and (2) comparison of ethics trigger counts between the remote and on-site ethicist during rounds.
Results: Issues with audio represented the majority of technical problems. Once technical difficulties were addressed, the on-site ethicist’s count of “triggers” was not statistically different from the count of the remote ethicist.
Conclusion: Remote clinical ethics rounding is feasible when the equipment is optimized. Remote ethicists can identify similar numbers of “triggers” for possible ethical issues when compared to on-site ethicist numbers.
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Systematic Review of Typologies Used to Characterize Clinical Ethics Consultations
Jennifer E. deSante-Bertkau, Michelle L. McGowan, and Armand H. Matheny Antommaria, The Journal of Clinical Ethics 29, no. 4 (Winter 2018): 291-304.
Introduction: Classifying the ethical issues in clinical ethics consultations is important to clinical practice and scholarship. We conducted a systematic review to characterize the typologies used to analyze clinical ethics consultations.
Methods: We identified empirical studies of clinical ethics consultation that reported types of ethical issues using PubMed. We screened these articles based on their titles and abstracts, and then by a review of their full text. We extracted study characteristics and typologies and coded the typologies.
Results: We reviewed 428 articles; 30 of the articles fulfilled our inclusion criteria. We identified 27 unique typologies. Each typology contained five to 47 categories (mean = 18). The most common categories were do-not-attempt-resuscitation orders (19 typologies, 70 percent), capacity (18 typologies, 67 percent), withholding (18 typologies, 67 percent), withdrawing (17 typologies, 63 percent), and surrogate or proxy (16 typologies, 59 percent). Only seven (26 percent) of the typologies contained all five of the most common categories.
The typologies we used to characterize clinical ethics consultations exhibit significant heterogeneity and several conceptual limitations. A common typology is needed whose development may require multi-institutional collaboration and could be facilitated by professional organizations.
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Justice and Respect for Autonomy: Jehovah’s Witnesses and Kidney Transplant
Paul J. Cummins and Federico Nicoli, The Journal of Clinical Ethics 29, no. 4 (Winter 2018): 305-12.
That Jehovah’s Witnesses may refuse lifesaving blood transfusions is a morally accepted feature of contemporary medical practice. The principle of respect for autonomy supports this, and there is seldom reason to interfere with this choice because it rarely harms another individual. Advances in surgical technique have made it possible for transplant surgeons to perform bloodless organ transplant, enabling Jehovah’s Witnesses to benefit from this treatment. When the transplant organ is a directed donation from a family member or friend, no ethical dilemma arises. However, when a Jehovah’s Witness cannot identify a living donor and wishes to be listed for organ transplant, the transplant team may face an ethical dilemma. On the one hand, it wishes to provide care to the patient that is compatible with her or his preferences. On the other hand, the team may wonder if it is fair to other patients who need an organ and will accept blood transfusion to include the Jehovah’s Witness patient on a waiting list for a donated organ. If the Jehovah’s Witness patient is listed and receives an organ, then a patient who also needs an organ, and who is willing to accept all care to optimize the success of the transplant, may be denied an organ.
To frame the ethical dilemma outlined above we present an anonymized case of a Jehovah’s Witness woman in urgent need of a kidney, who was referred to one of the authors’ institution’s transplant center. We review the evolution of the Jehovah’s Witness position on blood transfusion and the medical community’s efforts to provide care that accommodates this religious commitment. If Witnesses are to be denied transplant in the name of justice, there must be an ethically sound reason. We identify two rationales in the literature: (1) this allocation is unacceptable because it will cost lives; (2) resources should be allocated to patients who comply with the standard of care. We argue that neither apply to this dilemma. We also emphasize the importance of examining the data on outcomes of transplant with and without transfusion. Our interpretation of the published data on transplant without transfusion is that the outcomes are similar. We conclude that, in the absence of data that resources are risked, it is not ethical to refuse to include a Jehovah’s Witness patient on a waiting list for an organ. Finally, we reflect on the heterogeneity in transplant institutes’ polices for accepting Jehovah’s Witness patients.
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Cases from the Cleveland Clinic
Discomfort as a Catalyst: An Ethical Analysis of Donation after Cardiac Death in a Patient with Locked-In Syndrome
Bethany Bruno and Margot M. Eves, The Journal of Clinical Ethics 29, no. 4 (Winter 2018): 313-8.
Diabetes is epidemic and many people cannot afford insulin, a lifesaving medication, as its price has increased by almost 160 percent in the past five years.1 To help subsidize the cost of insulin, one of the staff members at my hospital would like to give patients copayment coupons provided to her by pharmaceutical companies. I advised my colleague to stop distributing these branded coupons, as they promote particular pharmaceutical companies. This practice is not consistent with the policy on interaction with industry established by the Johns Hopkins Health System. Yet at the same time, I want my patients to be able to afford their insulin so they can treat their diabetes. I truly believe in utilitarianism. Would temporarily subsidizing patients’ insulin make me and my staff better healthcare providers? Would this minimize my patients’ financial burden? Would giving away medications coupons help pharmaceutical companies influence me as a prescriber? This challenge created a personal internal debate and profound moral distress.
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Perspective
To Give or Not to Give: The Challenge of Pharmaceutical Coupons
Mihail Zilbermint and Louise Schiavone, The Journal of Clinical Ethics 29, no. 4 (Winter 2018): 319-22.
Diabetes is epidemic and many people cannot afford insulin, a lifesaving medication, as its price has increased by almost 160 percent in the past five years.1 To help subsidize the cost of insulin, one of the staff members at my hospital would like to give patients copayment coupons provided to her by pharmaceutical companies. I advised my colleague to stop distributing these branded coupons, as they promote particular pharmaceutical companies. This practice is not consistent with the policy on interaction with industry established by the Johns Hopkins Health System. Yet at the same time, I want my patients to be able to afford their insulin so they can treat their diabetes. I truly believe in utilitarianism. Would temporarily subsidizing patients’ insulin make me and my staff better healthcare providers? Would this minimize my patients’ financial burden? Would giving away medications coupons help pharmaceutical companies influence me as a prescriber? This challenge created a personal internal debate and profound moral distress.
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The Journal of Clinical Ethics, Volume 29, Number 3, Fall 2018
At the Bedside
How We May Become Detached from Our Patients and What We Can Do If This Happens
Edmund G. Howe, The Journal of Clinical Ethics 29, no. 3 (Fall 2018): 167-78.
When clinicians provide clinical care or participate in ethics consultations, they may feel exceptionally painful emotions. When they do, they may distance themselves emotionally from patients and families. This distancing may harm these parties profoundly. It is therefore critical that clinicians avoid this distancing. In this piece, I present an approach that lies outside traditional practice that clinicians may use to try to avoid and even reverse this distancing, if and when they sense that this may be occurring. This approach may also benefit patients and families. It may increase their sense that their clinicians are working with them as allies to achieve their shared medical goals.
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Deathbed Confession: When a Dying Patient Confesses to Murder: Clinical, Ethical, and Legal Implications
Laura Tincknell, Anne O’Callaghan, Joanna Manning, and Phillipa Malpas, The Journal of Clinical Ethics 29, no. 3 (Fall 2018): 179-84.
During an initial palliative care assessment, a dying man discloses that he had killed several people whilst a young man. The junior doctor, to whom he revealed his story, consulted with senior palliative care colleagues. It was agreed that legal advice would be sought on the issue of breaching the man’s confidentiality. Two legal opinions conflicted with each other. A decision was made by the clinical team not to inform the police.
In this article the junior doctor, the palliative medicine specialist, a medical ethicist, and a lawyer consider the case from their various perspectives.
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Ethical Challenges in Acute Evaluation of Suspected Psychogenic Stroke Mimics
Alexandra J. Sequeira, Michael G. Fara, and Ariane Lewis, The Journal of Clinical Ethics 29, no. 3 (Fall 2018): 185-90.
Tissue plasminogen activator (tPA) is administered to patients with suspected ischemic stroke to improve blood flow to the brain In rare cases, patients present with complaints of stroke symptoms that appear to be non-organic due to malingering, factitious disorder, or conversion disorder (psychogenic stroke mimics). Deciding whether or not to administer tPA to these patients can be challenging. The risk of hemorrhage after administration of tPA is low, but not zero. The ethical principles of beneficence and nonmaleficence need to be weighed carefully in these situations. We present two cases of patients with suspected psychogenic stroke mimics to illustrate the ethical challenges faced in identifying and managing psychogenic stroke mimics. Further research is needed to demonstrate effective treatment strategies for patients with acute stroke symptoms of psychogenic etiology.
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Positive HIV Test Results from Deceased Organ Donors: Should We Disclose to Next of Kin?
Anne L. Dalle Ave and David M. Shaw, The Journal of Clinical Ethics 29, no. 3 (Fall 2018): 191-5.
In the context of deceased organ donation, donors are routinely tested for HIV, to check for suitability for organ donation. This article examines whether a donor’s HIV status should be disclosed to the donor’s next of kin.
On the one hand, confidentiality requires that sensitive information not be disclosed, and a duty to respect confidentiality may persist after death. On the other hand, breaching confidentiality may benefit third parties at risk of having been infected by the organ donor, as it may permit them to be tested for HIV and seek treatment in case of positive results.
We conclude that the duty to warn third parties surpasses the duty to respect confidentiality. However, in order to minimize risks linked to the breach of confidentiality, information should be restrained to only concerned third parties, that is, those susceptible to having been infected by the donor.
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Posthumous HIV Disclosure and Relational Rupture
Laura K. Guidry-Grimes and D. Micah Hester, The Journal of Clinical Ethics 29, no. 3 (Fall 2018): 196-200.
In response to Anne L. Dalle Ave and David M. Shaw, we agree with their general argument but emphasize a moral risk of HIV disclosure in deceased donation cases: the risk of relational rupture. Because of the importance that close relationships have to our sense of self and our life plans, this kind of rupture can have long-ranging implications for surviving loved ones. Moreover, the now-deceased individual cannot participate in any relational mending. Our analysis reveals the hefty moral costs that disclosure can bring, which should influence what information is given to would-be donors and how organ procurement coordinators approach these conversations.
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Plain Anabaptists and Healthcare Ethics
James Benedict, The Journal of Clinical Ethics 29, no. 3 (Fall 2018): 201-5.
Plain Anabaptists are a small but rapidly growing ethnoreligious society with significant concentrations of population in a number of regions in North America. Among the most widely known of the various groups of Plain Anabaptists are the Amish and the Old Order Mennonites. It is the purpose of this article to provide insight into the culture and values of the Plain Anabaptists so that those who may be called upon to address ethical conflict involving Plain Anabaptists can do so with appropriate knowledge and sensitivity. The discussion of the culture and values of the Plain Anabaptists will be organized as follows: first we will explore the implications of Plain Anabaptist culture and values for applying the ethical principles of respect for autonomy and beneficence/nonmaleficence. Second, a brief description of several elements of Plain Anabaptist culture will be discussed with attention to the potential they create for ethical conflict in the healthcare setting.
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Refusal of Vaccination: A Test to Balance Societal and Individual Interests
Kavita Shah Arora, Jane Morris, and Allan J. Jacobs, The Journal of Clinical Ethics 29, no. 3 (Fall 2018): 206-16.
While all states in the United States require certain vaccinations for school attendance, all but three allow for religious exemptions to receiving such vaccinations, and 18 allow for exemptions on the basis of other deeply held personal beliefs. The rights of parents to raise children as they see fit may conflict with the duty of the government and society to protect the welfare of children. In the U.S., these conflicts have not been settled in a uniform and consistent manner. We apply a test that provides a concrete and formal rubric to evaluate such conflicts. For some vaccinations, based on the individual medical characteristics of the disease and the risks of being unvaccinated, the test would suggest that permitting conscientious exemptions is ethical. However, for vaccinations protecting against other diseases that are more severe or easily transmitted, the test would suggest that the federal government may ethically impose laws that deny such exemptions.
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Nursing Ethics Huddles to Decrease Moral Distress among Nurses in the Intensive Care Unit
Marianne C. Chiafery, Patrick Hopkins, Sally A. Norton, and Margie Hodges Shaw, The Journal of Clinical Ethics 29, no. 3 (Fall 2018): 217-26.
Background: Moral distress (MD) is an emotional and psychological response to morally challenging dilemmas. Moral distress is experienced frequently by nurses in the intensive care unit (ICU) and can result in emotional anguish, work dissatisfaction, poor patient outcomes, and high levels of nurse turnover. Opportunities to discuss ethically challenging situations may lessen MD and its associated sequela.
Objective: The purpose of this project was to develop, implement, and evaluate the impact of nursing ethics huddles on participants’ MD, clinical ethics knowledge, work satisfaction, and patient care among ICU nurses.
Sample and Setting: The sample, 32 nurses from three ICU settings in an 800-bed tertiary academic medical center, participated in six nursing ethics huddles over a two-month period.
Methods: Alvita K. Nathaniel’s Theory of Moral Reckoning guided development of the nursing ethics huddle process. The Moral Distress Thermometer was administered at three data points: baseline level of MD, and pre- and post-huddle to determine changes in the subjects’ level of MD. Focused content analysis was used to analyze qualitative responses from questionnaires about the subjects’ perception of the effect of the huddles on work satisfaction and patient care. Knowledge attainment was evaluated via open-ended short-answer questions.
Results: Overall, use of nurse-ethicist-led nursing ethics huddles was associated with improved quality of work life, patient care, and clinical ethics knowledge. The change in pre- and post-nursing ethics huddles MD scores was statistically significant (p < 0.0001).
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”I Would Do It All Over Again”: Cherishing Time and the Absence of Regret in Continuing a Pregnancy after a Life-Limiting Diagnosis
Charlotte Wool, Rana Limbo, and Erin M. Denney-Koelsch, The Journal of Clinical Ethics 29, no. 3 (Fall 2018): 227-36.
Parents, after learning of a life-limiting fetal condition (LLFC), experience emotional distress and must consider options that impact the remainder of the pregnancy, their future lives, and family members. For those who continue, little is known about their long-term presence or absence of regret about their choice, the reasons for this feeling, or its impact on their life. The aim of this research was to examine the concept of decision regret in parents who opted to continue a pregnancy affected by an LLFC. The contextual factors, conditions, and consequences surrounding the presence or absence of regret were analyzed.
Data were retrieved from a cross-sectional study using the Quality of Perinatal Palliative Care and Parental Satisfaction Instrument. Participants were parents (N = 405) who experienced a life-limiting prenatal diagnosis and opted to continue their pregnancy. Secondary data analysis examined qualitative responses (121/402) to an item addressing regret. Dimensional analysis was used to examine data, identifying context, conditions, and consequences associated with the presence or absence of regret.
Absence of regret was articulated in 97.5 percent of participants. Parents valued the baby as a part of their family and had opportunities to love, hold, meet, and cherish their child. Participants treasured the time together before and after the birth. Although emotionally difficult, parents articulated an empowering, transformative experience that lingers over time.
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Perspectives
The Mission of Safety Net Hospitals: Charity or Equity?
Thea James, The Journal of Clinical Ethics 29, no. 3 (Fall 2018): 237-9.
The traditional mission of safety net hospitals has been charity, providing the best healthcare for all individuals no matter their ability to pay. The focus has been on vulnerable populations that are low-income, uninsured, and other upstream circumstances that manifest downstream as poor health, poor health outcomes, and repeated high-cost interventions that fail to break cycles of perpetual health instability. Safety net hospitals are committed to serving their populations, even if only temporarily, through provision of subsidies and filling gaps that exist in patients’ lives. These interventions do not lead to the elimination of gaps, hence cyclical health instability persists. It is a new day in healthcare and what it means for people to be well. The focus is on improving health outcomes by addressing root causes of health instability such as unstable housing, income, education, and access to affordable healthy foods. This gives us pause to reflect on the traditional mission of safety net hospitals and the impact of charity in isolation. Are safety net hospitals missing an opportunity to mitigate and eliminate perpetual health instability? Can they shift the paradigm of healthcare for vulnerable populations to alter their quality-of-life course? To move forward, safety net hospitals have to change their mind set and existing narratives about what is possible for vulnerable populations to achieve. These historic giants in healthcare have an opportunity to use their assets and employ a methodology of disruption and innovation to shift the mission of safety net healthcare from charity to equity.
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Scribes, Electronic Health Records, and the Expectation of Confidentiality
Paul M. Wangenheim, The Journal of Clinical Ethics 29, no. 3 (Fall 2018): 240-3.
Electronic health record (EHRs) have largely replaced obsolete paper medical charts. This replacement has produced an increased demand on physicians’ time and has compromised efficiency. In an attempt to overcome this perceived obstacle to productivity, physicians turned to medical scribes to perform the work required by EHRs. In doing so, they have introduced an uninvited participant in the physician-patient relationship and compromised patients’ confidentiality. Scribes may be a successful work around for physicians frustrated by EHRs, but patients’ confidentiality should not be sacrificed in the process.
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The Journal of Clinical Ethics, Volume 29, Number 2, Summer 2018
At the Bedside
Edge-of-the-Field Ethics Consulting: What Are We Missing?
Edmund G. Howe, The Journal of Clinical Ethics 29, no. 2 (Summer):81-92.
Ethics consultants’ grasp of ethical principles is ever improving. Yet, what still remains and will remain lacking is their ability to access factors that lie outside their conscious awareness and thus still effect suboptimal outcomes. This article will explore several ways in which these poor outcomes may occur. This discussion will include clinicians’ implicit biases, well-intentioned but nonetheless intrusive violations of patients’ privacy, and clinicians’ unwittingly connoting to patients and families that clinicians regard their moral values and conclusions as superior. I shall suggest several ways in which clinicians may seek to reduce these sources of bad outcomes or at least to do better when they occur.
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Features
Psychiatric Diagnoses and Informed Consent
Andrew Clark, The Journal of Clinical Ethics 29, no. 2 (Summer): 93-9.
Although informed consent for treatment has become a cornerstone principle of psychiatric care, the process of diagnosis has remained largely in the hands of the physician alone. While the conferring of a psychiatric diagnosis has historically not been considered a form of medical intervention, the potential impact of a diagnosis for any particular patient may be substantial. This article explores the challenges involved in balancing respect for patients with the physician’s duty of truth-telling and clinical accuracy.
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Response to “Psychiatric Diagnoses and Informed Consent”
David Brendel, The Journal of Clinical Ethics 29, no. 2 (Summer): 100-1.
A patient’s rights to informed consent and self-determination in psychiatric treatment are well enshrined, but the same rights have not yet been meaningfully extended to patients with regard to psychiatric diagnosis. Andrew Clark’s essay entitled “Psychiatric Diagnoses and Informed Consent” in The Journal of Clinical Ethics empowers both psychiatrists and patients to rethink who “owns” the process of clinical assessment and of bestowing diagnostic labels that may have far-reaching consequences. Clark’s article represents a noteworthy breakthrough in the field’s ongoing journey toward enhancing informed consent, personal dignity, and patients’ active involvement in their own care.
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TTaPP: Together Take a Pause and Ponder: A Critical Thinking Tool for Exploring the Public/Private Lives of Patients
Leslie Kuhnel, The Journal of Clinical Ethics 29, no. 2 (Summer): 102-13.
The broad use of social networking and user-generated content has increased the online footprint of many individuals. A generation of healthcare professionals have grown up with online search activities as part of their everyday lives. Sites like Facebook, Twitter, and Instagram have given the public new ways to share intimate details about their public and private lives and the lives of their friends and families. As a result, careproviders have the ability to find out more about their patients with just the tap of a key or the click of a mouse. This type of online searching for patient information is known as patient-targeted googling or PTG.
This article provides an overview of the emergence of PTG, identifies the potential benefits and possible pitfalls of engaging in PTG, and explores current ethical frameworks that guide decisions about PTG. The article describes the development of a critical thinking tool developed by the Behavioral Health Ethics Committee at CHI Health, that can serve as a best-practice model for other hospitals and health systems. Called TTaPP (Together Take a Pause and Ponder), this tool is designed to help healthcare professionals across settings practice collaborative critical thinking skills as they consider the ethical questions of whether or not to engage in PTG. Finally, this article suggests areas for further study, including ways to prompt collaboration and appropriate documentation by maximizing electronic medical records systems, exploring the effectiveness of the TTaPP tool as a way to promote a culture of collaborative critical thinking practices, and the attitudes of patients and the public regarding PTG.
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Medical Futility in Concept, Culture, and Practice
Grattan T. Brown, The Journal of Clinical Ethics 29, no. 2 (Summer): 114-23.
This article elucidates the premises and limited meaning of medical futility in order to formulate an ethically meaningful definition of the term, that is, a medical intervention’s inability to deliver the benefit for which it is designed. It uses this definition to show the two ways an intervention could become medically futile, to recommend an even more limited usage of medical futility, and to explain why an intervention need not be futile in order to be withdrawn over patient-based objections. If an intervention retains some benefit, then patients or surrogates might legitimately consider that benefit in their case and request the intervention. Physicians might still be justified in declining it on the grounds that the burdens greatly outweigh the benefits, but not on the grounds of futility. Finally, the article uses bioethics research and healthcare litigation to clarify the meaning of futility in practice and recommends alternative language when possible.
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Action Guide for Addressing Ethical Challenges of Resource Allocation Within Community-Based Healthcare Organization
Krista L. Harrison, Holly A. Taylor, and Maria W. Merritt, The Journal of Clinical Ethics 29,
no. 2 (Summer): 124-38.
This article proposes an action guide to making decisions regarding the ethical allocation of resources that affect access to healthcare services offered by community-based healthcare organizations. Using the filter of empirical data from a study of decision making in two community-based healthcare organizations, we identify potentially relevant conceptual guidance from a review of frameworks and action guides in the public health, health policy, and organizational ethics literature. We describe the development of this action guide. We used data from a prior empirical study of the values that influence decision making about the allocation of resources in particular types of community-based healthcare organizations. We evaluated, organized, and specified the conceptual guidance we found in 14 frameworks for ethical decision making. The result is an action guide that includes four domains that are relevant to the context of the decision to be made, eight domains that are relevant to the process of the decision to be made, and 15 domains that are relevant to the criteria of the decision to be made. We demonstrate the potential use of this action guide by walking through an illustrative resource allocation decision. The action guide provides community-based healthcare organizations with a conceptually grounded, empirically informed framework for ethical decision making.
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Treating Vulnerable Populations
Medical Decision Making for Medically Complex Children in Foster Care: Who Knows the Child’s Best Interests?
Rebecca R. Seltzer, Rachel A.B. Dodge, and Renee D. Boss, The Journal of Clinical Ethics 29, no. 2 (Summer): 139-44.
Approximately one in 10 children in foster care are medically complex and require intensive medical supervision, frequent hospitalization, and difficult medical decision making. Some of these children are in foster care because their parents cannot care for their medical needs; other parents are responsible for their child’s medical needs due to abuse or neglect. In either case, there can be uncertainty about the role that a child’s biological parents should play in making serious medical decisions. Here we highlight some of the ethical challenges inherent in making these decisions for children in foster care, as seen through the lenses of a child welfare provider, an inpatient care physician, and a primary care pediatrician.
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Medically Complex Children in Foster Care: Do Research “Protections” Make This “Vulnerable Population” More Vulnerable?
Rebecca R. Seltzer, Megan Kasimatis Singleton, Erin P. Williams, and Renee D. Boss, The Journal of Clinical Ethics 29, no. 2 (Summer): 145-9.
Children in foster care are considered a “vulnerable population” in clinical care and research, with good reason. These children face multiple medical, psychological, and social risks that obligate the child welfare and healthcare systems to protect them from further harms. An unintended consequence of the “vulnerable population” designation for children in foster care is that it may impose barriers on tracking and studying their health that creates gaps in knowledge that are key to their receipt of medical care and good outcomes. These gaps in knowledge have implications for justice, beneficence, and maleficence and serve to undermine “protection” of this population. Here we review the challenges of research regarding children in foster care, particularly medically complex children, and offer specific recommendations to include children in foster care in medical research.
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Ethics Consultation Practice
The Work of ASBH’s Clinical Ethics Consultation Affairs Committee: Development Processes Behind Our Educational Materials
Courtenay R. Bruce, Jane Jankowski, Barbara L. Chanko, Anne Cordes, Barrie J. Huberman, Liza-Marie Johnson, Deborah L. Kasman, Aviva Katz, Ellen M. Robinson, Katherine Wasson, and George E. Hardart, The Journal of Clinical Ethics 29, no. 2 (Summer): 150-7.
The authors of this article are previous or current members of the Clinical Ethics Consultation Affairs (CECA) Committee, a standing committee of the American Society for Bioethics and Humanities (ASBH). The committee is composed of seasoned healthcare ethics consultants (HCECs), and it is charged with developing and disseminating education materials for HCECs and ethics committees. The purpose of this article is to describe the educational research and development processes behind our teaching materials, which culminated in a case studies book called A Case-Based Study Guide for Addressing Patient-Centered Ethical Issues in Health Care (hereafter, the Study Guide). In this article, we also enumerate how the Study Guide could be used in teaching and learning, and we identify areas that are ripe for future work.
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The Development and Rationale for CECA’s Case-Based Study Guide
George J. Agich, The Journal of Clinical Ethics 29, no. 2 (Summer): 158-61.
This article discusses the approach of the Clinical Ethics Consultation Advisory Committee (CECA) in developing A Case-Based Study Guide for Addressing Patient-Centered Ethical Issues in Health Care. This article addresses the processes used by the CECA, its use of pivot questions intended to encourage critical reflection, and the target audience of this work. It first considers the salience of case studies in general education and their relevance for training ethics consultants. Second, it discusses the enfolding approach used in presenting the case material designed to engage the trainee in the details of the case while stimulating critical reflection. And, third, this article briefly comments on the target audience with the caveat that even superbly developed cases are prone to misuse, although that prospect should not deter their development.
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Letter
Can Islamic Jurisprudence Justify Procurement of Transplantable Vital Organs in Brain Death?
Mohamed Y. Rady, The Journal of Clinical Ethics 29, no. 2 (Summer): 162-3.
In their article, “An International Legal Review of the Relationship between Brain Death and Organ Transplantation,” in The Journal of Clinical Ethics 29, no. 1, Aramesh, Arima, Gardiner, and Shah reported on diverse international legislative approaches for justifying procurement of transplantable vital organs in brain death. They stated, “In Islamic traditions in particular, the notion of unstable life is a way to justify organ donation from brain-dead patients that we believe has not been fully described previously in the literature.” This commentary queries the extent to which this concept is valid in accordance with the primary source of Islamic law, that is, the Quran.
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The Journal of Clinical Ethics, Volume 29, Number 1, Spring 2018
At the Bedside
Slowing Down Fast Thinking to Enhance Understanding
Edmund G. Howe, The Journal of Clinical Ethics 29, no. 1 (Spring 2018): 3-14.
Stress can make the comprehension of complex information more difficult, yet patients and their family members often must receive, process, and make decisions based on new, complex information presented in unfamiliar and stressful clinical environments such the intensive care unit. Family members may be asked to make decisions regarding the donation of organs and genetic tissue soon after the death of a loved one, based on new, complex information, under tight time limits. How can we assist patients and families better process complex information while under stress, and to make better decisions for themselves or for a loved one?
Features
“Buying-In” and “Cashing-Out”: Patients’ Experience and the Refusal of Life-Prolonging Treatment
Nathan Scheiner and Joan Liaschenko, The Journal of Clinical Ethics 29, no. 1 (Spring 2018): 15-9.
Surgical “buy-in” is an “informal contract between surgeon and patient in which the patient not only consents to the operative procedure but commits to the post-operative surgical care anticipated by the surgeon.” Surgeons routinely assume that patients wish to undergo treatment for operative complications so that the overall treatment course is “successful,” as in the treatment of a post-operative infection. This article examines occasions when patients buy-in to a treatment course that carries risk of complication, yet refuse treatment when complications arise. We coin this counter-phenomenon “cashing-out.” Cashing-out may elicit negative feelings among careproviders. We question why patients or families may wish to cash-out. One reason may be the changing epistemological position of patients as they experience a complication. The shift from the hypothetical discussion of complications during the initial informed-consent process to the experience of having a complication represents new knowledge. Patients and families may use this knowledge as the basis to revoke consent for some or all of the remaining treatment course. This article seeks to understand cashing-out in terms of the patients’ experiences. We hope to prompt recognition of this phenomenon across medical contexts and to provide impetus for further work to understand why patients may wish to cash-out.
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Impact of Cognitive Load on Family Decision Makers’ Recall and Understanding of Donation Requests for the Genotype-Tissue Expression (GTEx) Project
Laura A. Siminoff, Maureen Wilson-Genderson, Maghboeba Mosavel, Laura Barker, Jennifer Trgina, Heather M. Traino, Howard M. Nathan, Richard D. Hasz, and Gary Walters, The Journal of Clinical Ethics 29, no. 1 (Spring 2018): 20-30.
Genomic research projects that collect tissues from deceased organ and tissue donors must obtain the authorization of family decision makers under difficult circumstances that may affect the authorization process. Using a quasi-experimental design, the Ethical, Legal, and Social Issues (ELSI) substudy of the Genotype-Tissue Expression (GTEx) project compared the recall and understanding of the donation authorization process of two groups: family members who had authorized donation of tissues to the GTEx project (the comparison group) and family members who had authorized organ and tissue donations in years previous, who subsequently participated in two different mock-authorization processes that mimicked the GTEx authorization process (the intervention groups). Participants in the comparison and intervention groups were matched on key demographic characteristics.
We found that participants in the intervention groups who experienced a mock-authorization process demonstrated better recall of the tissue donation request than members of the comparison group. Our data indicate that the stress associated with the loss of a loved one limited the ability of family members to recall details about the GTEx project. However, we found a similar lack of knowledge in both the comparison and the intervention group participants, suggesting lack of knowledge may be due to the complexity and unfamiliarity of the information presented to them during the authorization process. We discuss these findings in the context of everyday clinical decision making in cognitively challenging conditions.
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An International Legal Review of the Relationship between Brain Death and Organ Transplantation
Kiarash Aramesh, Hitoshi Arima, Dale Gardiner, and Seema K. Shah, The Journal of Clinical Ethics 29, no. 1 (Spring 2018): 31-42.
The “dead-donor rule” states that, in any case of vital organ donation, the potential donor should be determined to be dead before transplantation occurs. In many countries around the world, neurological criteria can be used to legally determine death (also referred to as brain death). Nevertheless, there is considerable controversy in the bioethics literature over whether brain death is the equivalent of biological death. This international legal review demonstrates that there is considerable variability in how different jurisdictions have evolved to justify the legal status of brain death and its relationship to the dead-donor rule.
In this article, we chose to review approaches that are representative of many different jurisdictions—the United States takes an approach similar to that of many European countries; the United Kingdom’s approach is followed by Canada, India, and influences many other Commonwealth countries; Islamic jurisprudence is applicable to several different national laws; the Israeli approach is similar to many Western countries, but incorporates noteworthy modifications; and Japan’s relatively idiosyncratic approach has received some attention in the literature. Illuminating these different justifications may help develop respectful policies regarding organ donation within countries with diverse populations and allow for more informed debate about brain death and the dead-donor rule.
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Clinical Practice
The Bedside Capacity Assessment Tool: Further Development of a Clinical Tool to Assist with a Growing Aging Population with Increased Healthcare Complexities
Maria Torrroella Carney, Brian Emmert, and Brian Keefe, The Journal of Clinical Ethics 29, no. 1 (Spring 2018): 43-51.
Background: As the population of the United States ages, chronic diseases increase and treatment options become technologically more complicated. As such, patients’ autonomy, or the right of patients to accept or refuse a medical treatment, may become a more pressing and complicated issue. This autonomy rests upon a patient’s capacity to make a decision. As more older, cognitively and functionally impaired individuals enter healthcare systems, quality assessments of decision-making capacity must be made. These assessments should be done in a time-efficient manner at a patient’s bedside by the patient’s own physician. Thus, a clinically practical tool to assist in decision-making capacity assessments could help guide physicians in making more accurate judgments.
Objectives: To create a clinically relevant Bedside Capacity Assessment Tool (BCAT) to help physicians make timely and accurate clinical assessments of a patient’s decision-making capacity for a specific decision.
Setting: The Department of Medicine, Division of Geriatrics and Palliative Medicine, Zucker School of Medicine at Hofstra/Northwell .
Participants: Geriatric medicine fellows, palliative medicine fellows, and internal medicine residents (n = 30).
Measurements: Subjects used the BCAT to assess the decision-making capacity of patients described in 10 written, clinically complex capacity assessment vignettes. Subjects’ conclusions were compared to those of experts.
Results: The subjects’ and experts’ assessments of capacity had a 76.1 percent rate of agreement, with a range of 50 percent to 100 percent. With removal of three complex outlier vignettes, the agreement rate reached 83.2 percent.
Conclusion: The strong correlation between the two groups—one of physicians in training utilizing the BCAT and the other of specialists in this area—suggests that the BCAT may be a useful adjunct for clinicians who assess decision-making capacity in routine practice. The range indicates that further refinement and testing of this tool is necessary. The potential exists for this tool to improve capacity assessment skills for physicians in clinical practice.
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Meaningful Use of Electronic Health Records for Quality Assessment and Review of Clinical Ethics Consultation
Susan Sanelli-Russo, Kelly McBride Folkers, William Sakolsky, Joseph J. Fins, and Nancy Neveloff Dubler, The Journal of Clinical Ethics 29, no. 1 (Spring 2018): 52-61.
Evolving practice requires peer review of clinical ethics (CE) consultation for quality assessment and improvement. Many institutions have identified the chart note as the basis for this process, but to our knowledge, electronic health record (EHR) systems are not necessarily designed to easily include CE consultation notes. This article provides a framework for the inclusion of CE consultation notes into the formal EHR, describing a developed system in the Epic EHR that allows for the elaborated electronic notation of the CE chart note. The implementation of the “meaningful use” criteria for EHR, mandated by the Health Information Technology for Economic and Clinical Health (HITECH) Act of 2009, requires that health professionals meet certain standards for quality, efficiency, and safety, all of which overlap with the goals of standardization, peer review, and quality improvement within CE consultation.
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The Ethics of Bundled Payments in Total Joint Replacement: ”Cherry Picking” and “Lemon Dropping”
Casey Jo Humbyrd, The Journal of Clinical Ethics 29, no. 1 (Spring 2018): 62-8.
The Centers for Medicare & Medicaid Services has initiated bundled payments for hip and knee total joint replacement in an effort to decrease healthcare costs and increase quality of care. The ethical implications of this program have not been studied. This article considers the ethics of patient selection to improve outcomes; specifically, screening patients by body mass index to determine eligibility for total joint replacement. I argue that this type of screening is not ethically defensible, and that the bundled payment program as structured is likely to lead to unfair restrictions on who receives total joint replacements.
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Law
Colorado’s New Proxy Law: Moving from Statute to Guidelines
Jacqueline J. Glover, Deb Bennett-Woods, and Jean Abbott, The Journal of Clinical Ethics 29, no. 1 (Spring 2018): 69-71.
In 2016, the Colorado legislature passed an amendment to Colorado’s medical proxy law that established a process for the appointment of a physician to act as proxy decision maker of last resort for an unrepresented patient (Colorado HB 16-1101: Medical Decisions For Unrepresented Patients). The legislative process brought together a diverse set of stakeholders, not all of whom supported the legislation. Following passage of the statutory amendment, the Colorado Collaborative for Unrepresented Patients (CCUP), a group of advocates responsible for initiating the legislative process, coordinated a unique effort to engage these stakeholders in the creation of a set of voluntary guidelines to assist facilities and individual careproviders in the implementation of policies and procedures enabled by the statute. This article delineates the questions and concerns of stakeholders, describes how those issues were addressed within the guidelines, and proposes additional opportunities for research to assess the impact of the legislation in Colorado.
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The Journal of Clinical Ethics, 28, number 4, Winter 2017
At the Bedside
New Ways to Cut through Ethical Gordian Knots
Edmund G. Howe, The Journal of Clinical Ethics 28, no. 4 (Winter 2017): 257-68.
Clinicians and ethicists routinely encounter complex ethical dilemmas that seem intractable, which have been described as ethical Gordian knots. How can they best assist patients and surrogate decision makers who are entangled in struggles around the capacity to make life-or-death treatment decisions? In this article I describe unconventional and unorthodox approaches to help slice through these dilemmas.
Features
Comparativism and the Grounds for Person-Centered Care and Shared Decision Making
Anders Herlitz, The Journal of Clinical Ethics 28, no. 4 (Winter 2017): 269-78.
This article provides a new argument and a new value-theoretical ground for person-centered care and shared decision making that ascribes to it the role of enabling rational choice in situations involving clinical choice. Rather than referring to good health outcomes and/or ethical grounds such as patient autonomy, it argues that a plausible justification and ground for person-centered care and shared decision making is preservation of rationality in the face of comparative non-determinacy in clinical settings. Often, no alternative treatment will be better than or equal to every other alternative. In the face of such comparative non-determinacy, Ruth Chang has argued that we can make rational decisions by invoking reasons that are created through acts of willing. This article transfers this view to clinical decision making and argues that shared decision making provides a solution to non-determinacy problems in clinical settings. This view of the role of shared decision making provides a new understanding of its nature, and it also allows us to better understand when caregivers should engage in shared decision making and when they should not.
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Incapacitated Surrogates: A New and Increasing Dilemma in Hospital Care
Karen L. Smith, Patrice Fedel, and Jay Heitman, The Journal of Clinical Ethics 28, no. 4 (Winter 2017): 279-84.
A power of attorney for healthcare (POAHC) form gives designated individuals legal status to make healthcare decisions when patients are unable to convey their decisions to medical staff. Completion of a POAHC form is crucial in the provision of comprehensive healthcare, since it helps to ensure that patients’ interests, values, and preferences are represented in decisions about their medical treatment. Because increasing numbers of people suffer from debilitating illness and cognitive deficits, healthcare systems may be called upon to navigate the complexities of patients’ care without clear directives from the patients themselves. Hence, the healthcare industry encourages all individuals to complete a POAHC form to ensure that persons who have the patients’ trust are able to act as their surrogate decision makers. However, sometimes POAHC agents, even when they are patients’ trusted agents, lack the capacity to make fully informed decisions that are in the patients’ best interests. We describe designated surrogate decision makers who have impaired or diminished judgment capacity as incapacitated surrogates. Decision making that is obviously flawed or questionable is a significant impediment to providing timely and appropriate care to patients. Moreover, failure to redress these issues in a timely and efficient manner can result in significant costs to an institution and a diminished quality of patient care. The authors offer a legal, ethical, and interdisciplinary framework to help navigate cases of incapacitated surrogates.
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Measuring Instrument for Ethical Sensitivity in the Therapeutic Sciences
Alida Naudé and Juan Bornman, The Journal of Clinical Ethics 28, no. 4 (Winter 2017): 290-302.
There are currently no instruments available to measure ethical sensitivity in the therapeutic sciences. This study therefore aimed to develop and implement a measure of ethical sensitivity that would be applicable to four therapeutic professions, namely audiology, occupational therapy, physiotherapy, and speech-language pathology. The study followed a two-phase, sequential exploratory mixed-methods design. Phase One, the qualitative development phase, employed six stages and focused on developing an instrument based on a systematic review: an analysis of professional ethical codes, focus group discussions, in-depth interviews, a review of public complaints websites, and an expert panel review. The development phase culminated in the Measuring Instrument for Ethical Sensitivity in the Therapeutic Sciences (MIEST), a pen-and-paper measure for studying ethical sensitivity in the therapeutic sciences.
Phase Two, the quantitative stage, focused on implementing the MIEST in two different stages. A total of 100 participants completed the instrument. MIEST scores were found to be comparable for all four professions, which confirmed the multidisciplinary usability of the instrument. Participants tended to base decisions on the ethical principle of beneficence. The MIEST is effective to assess and describe the ethical sensitivity of professionals in the four specified therapeutic sciences. The constructed vignettes also make the MIEST appropriate for use in problem-based learning programs.
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Make It Plain: Strengthening the Ethical Foundation of First-Person Authorization for Organ Donation
James L. Benedict, The Journal of Clinical Ethics 28, no. 4 (Winter 2017): 303-7.
One response to the chronic shortage of organs for transplant in the United States has been the passage of laws establishing first-person authorization for donation of organs, providing legal grounds for the retrieval of organs and tissues from registered donors, even over the objections of their next of kin. The ethical justification for first-person authorization is that it is a matter of respecting the donor’s wishes. The objection of some next of kin may be that the donor would not have wished for his or her loved ones to have their preferences overridden, had they considered that possibility. This article examines the basis of the conflict and suggests a remedy grounded in the provision of donor-intent options that have the ability to clarify the donor’s wishes.
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Cases from the Cleveland Clinic
Incarcerated Patients and Equitability: The Ethical Obligation to Treat Them Differently
Lisa Fuller and Margot M. Eves, The Journal of Clinical Ethics 28, no. 4 (Winter 2017): 308-13.
Prisoners are legally categorized as a vulnerable group for the purposes of medical research, but their vulnerability is not limited to the research context. Prisoner-patients may experience lower standards of care, fewer options for treatment, violations of privacy, and the use of inappropriate surrogates as a result of their status. This case study highlights some of the ways in which a prisoner-patient’s vulnerable status impacted the care he received. The article argues the following: (1) Prisoner-patients are entitled to the same quality of care as all other patients, and healthcare providers should be vigilant to ensure that the stigma of incarceration does not influence care decisions. (2) Options for treatment should reflect what is most medically appropriate in the hospital or other healthcare setting, even when not all treatments would be available in the correctional setting. (3) The presence of guards at the bedside requires that additional measures be taken to protect the privacy and confidentiality of prisoner-patients. (4) When end-of-life decisions must be made for an incapacitated patient, prison physicians are not well placed to act as surrogate decision makers, which heightens the obligations of the healthcare professionals in the hospital to ensure an ethically supportable process and outcome. Therefore, healthcare professionals should provide extra protection for those prisoner-patients who do not have decision-making capacity, by utilizing a robust process for decision making such as those used for incapacitated patients without surrogates, rather than relying solely on prison physicians as surrogates.
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Clinical Ethics Consultation
Ongoing Evaluation of Clinical Ethics Consultations as a Form of Continuous Quality Improvement
Rebecca L. Volpe, The Journal of Clinical Ethics 28, no. 4 (Winter 2017): 314-7.
Ongoing evaluation of a clinical ethics consultation service (ECS) allows for continuous quality improvement, a process-based, data-driven approach for improving the quality of a service. Evaluations by stakeholders involved in a consultation can provide real-time feedback about what is working well and what might need to be improved. Although numerous authors have previously presented data from research studies on the effectiveness of clinical ethics consultation, few ECSs routinely send evaluations as an ongoing component of their everyday clinical activities. The primary purpose of this article is to equip and encourage others to engage in ongoing evaluation of their own ECS. Toward that end, the following resources are shared: (1) the survey tool used to gather the evaluation data, (2) the procedure used to elicit and collate responses, and (3) how the resulting data are used to support continuous quality improvement and justify the continued financial support of the ECS to hospital administration.
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Moral Distress, Ethical Environment, and the Embedded Ethicist
Donna Messutta, The Journal of Clinical Ethics 28, no. 4 (Winter 2017): 318-24.
Interest in understanding the experience of moral distress has steadily gained traction in the 30 years since Jameton first described the phenomenon. This curiosity should be of no surprise, since we now have data documenting the incidence across most caregiver roles and healthcare settings, both in the United States and internationally. The data have also amplified healthcare providers’ voices who report that the quality of the ethical environment is pivotal to preventing and containing the adverse effects caused by moral distress. Healthcare providers are asking for a moral space where ethics occurs at the bedside, in real time, applied to real cases. They are asking for ethics expertise to be available as part of the care team during their daily work, when treatment goals must be determined and decisions must be made. They are asking for an embedded ethicist who can help cultivate an ethical environment where formal ethics policy is properly applied to practice. This discussion advocates for an embedded ethics resource model that responds to contemporaneous ethics needs as a strategy to mitigate the effects of moral distress.
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Medical Education
The Rise of Hospitalists: An Opportunity for Clinical Ethics
Matthew W. McCarthy, Diego Real de Asua, and Joseph J. Fins, The Journal of Clinical Ethics 28, no. 4 (Winter 2017): 325-32.
Translating ethical theories into clinical practice presents a perennial challenge to educators. While many suggestions have been put forth to bridge the theory-practice gap, none have sufficiently remedied the problem. We believe the ascendance of hospital medicine, as a dominant new force in medical education and patient care, presents a unique opportunity that could redefine the way clinical ethics is taught. The field of hospital medicine in the United States is comprised of more than 50,000 hospitalists—specialists in inpatient medicine—representing the fastest growing subspecialty in the history of medicine, and its members have emerged as a dominant new force around which medical education and patient care pivot. This evolution in medical education presents a unique opportunity for the clinical ethics community. Through their proximity to patients and trainees, hospitalists have the potential to teach medical ethics in real time on the wards, but most hospitalists have not received formal training in clinical ethics. We believe it is time to strengthen the ties between hospital medicine and medical ethics, and in this article we outline how clinical ethicists might collaborate with hospitalists to identify routine issues that do not rise to the level of an “ethics consult,” but nonetheless require an intellectual grounding in normative reasoning. We use a clinical vignette to explore how this approach might enhance and broaden the scope of medical education that occurs in the inpatient setting: A patient with an intra-abdominal abscess is admitted to the academic hospitalist teaching service for drainage of the fluid, hemodynamic support, and antimicrobial therapy. During the initial encounter with the hospitalist and his team of medical students and residents, the patient reports night sweats and asks if this symptom could be due to the abscess. How should the hospitalist approach this question?
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The Journal of Clinical Ethics, 28, number 3, Fall 2017
At the Bedside
Nine Lessons from Ashley and Her Parents
Edmund G. Howe, The Journal of Clinical Ethics 28, no. 3 (Fall 2017): 177-88.
Parents’ love for their child, even a child who has severe impairments, may give them much joy and quality in their life. This is also the case for caregivers of adults with severe cognitive impairments, such as end-stage dementia. How can clinicians work with these parents and caregivers and help them?
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Features
Holding Ashley (X): Bestowing Identity Through Caregiving in Profound Intellectual Disability
Lisa Freitag and Joan Liaschenko, The Journal of Clinical Ethics 28, no. 3 (Fall 2017): 189-96.
The controversy over the so-called Ashley Treatment (AT), a series of medical procedures that inhibited both growth and sexual development in the body of a profoundly intellectually impaired girl, usually centers either on Ashley’s rights, including a right to an intact, unaltered body, or on Ashley’s parents’ rights to make decisions for her. The claim made by her parents, that the procedure would improve their ability to care for her, is often dismissed as inappropriate or, at best, irrelevant. We argue, however, that caregiving is a central issue in the controversy, as Ashley’s need for caregiving is a defining characteristic of her life. In this article, we analyze the ethics of the Ashley Treatment within the context of family caregiving. Through the physical and emotional work of caregiving, families participate in the formation and maintenance of personal identity, a process that Hilde Lindemann recently called “holding.” We argue that, in an intellectually disabled person such as Ashley, who depends on her family for every aspect of her care, the family’s contribution to identity is an essential source of personhood. We believe that the treatment can be justified if it is indeed an instance of appropriate family “holding” for Ashley.
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How We Become Who We Are: Ashley, Carla, and the Rest of Us
Jamie Lindemann Nelson, The Journal of Clinical Ethics 28, no. 3 (Fall 2017): 197-203.
Lisa Freitag and Joan Liaschenko’s thoughtful and important article goes directly to the under-examined heart of Ashley’s case, namely to what sustains her in a habitable and intelligible identity. Though quite sympathetic with their conclusion and line of argument, I try to trouble their proceedings a bit, largely by wondering how having a specific such identity, out of several that may be in-principle available, matters to someone with Ashley’s cognitive scope. I do this not simply to be contrary, but because their article also seems to me to raise issues in the ethics of bioethics—in particular, what I call the dilemma of ethical endeavor: How ought one publicly pursue deeply important and complex issues, the very raising of which may offend interlocutors who indeed have grounds for resentment. Making a habit of second guessing oneself may be part of the answer.
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Giving Voice to the Voiceless: The Colorado Response to Unrepresented Patients
Deb Bennett-Woods, Jean Abbott, and Jacqueline J. Glover, The Journal of Clinical Ethics 28, no. 3 (Fall 2017): 204-11.
Medical decision making on behalf of unrepresented patients is one of the most challenging ethical issues faced in clinical practice. The legal environment surrounding these patients is equally complex. This article describes the efforts of a small coalition of interested healthcare professionals to address the issue in Colorado. A brief history of the effort is presented, along with discussion of the legal, ethical, practical, and political dimensions that arose in Colorado’s effort to address decision making for unrepresented patients through an extension of the existing Colorado Medical Treatment Decision Act (CRS 15-18).1. A discussion of lessons learned in the process is included.
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Re-Evaluating the Ethics of Uterine Transplantation
Danish Zaidi, The Journal of Clinical Ethics 28, no. 3 (Fall 2017): 212-6.
In February 2016, the Cleveland Clinic initiated the first attempt at cadaveric uterine transplantation (UTx) in the United States. The transplantation was ultimately unsuccessful, but it opened doors for further research on both live and cadaveric UTx. While initial strides toward successful transplantation have been made, questions persist on the ethics of UTx: whether the uterus is a vital organ, whether we should prioritize live or cadaveric options, and how the procedure should be covered by health insurance. If we agree that the goal of the medical profession is both to treat and improve quality of life, then the question of whether or not infertility is considered a disease becomes inconsequential in the discussion. As such, the medical enterprise should move forward with research in UTx. In doing so, considering the ethical implications of UTx remains essential—and we must remember to pair innovation with regulation.
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May Medical Centers Give Nonresident Patients Priority in Scheduling Outpatient Follow-Up Appointments?
Armand H. Matheny Antommaria, The Journal of Clinical Ethics 28, no. 3 (Fall 2017): 217-221.
Many academic medical centers are seeking to attract patients from outside their historical catchment areas for economic and programmatic reasons, and patients are traveling for treatment that is unavailable, of poorer quality, or more expensive at home. Treatment of these patients raises a number of ethical issues including whether they may be given priority in scheduling outpatient follow-up appointments in order to reduce the period of time they are away from home. Granting them priority is potentially unjust because medical treatment is generally allocated based on medical need and resource utilization, and then on a first-come, first-served basis. While it is difficult to compare the opportunity cost of waiting for an appointment to different patients, nonresident patients incur higher expenditures for travel, room, and board than resident patients. Giving them priority in scheduling to reduce these costs may be justifiable. Preferentially scheduling nonresident patients may also indirectly benefit resident patients consistent with Rawls’s difference principle. This potential justification, however, rests on several empirical claims that should be demonstrated. In addition to reducing resident patients’ waiting times, medical centers should not prioritize nonresident patients over resident patients with more urgent medical needs. There is, therefore, a limited and circumscribed justification for prioritizing nonresident patients in scheduling follow-up appointments.
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Cases and Analysis
Responding to Moral Distress and Ethical Concerns at the Intersection of Medical Illness and Unmet Mental Health Needs
Donna D. McKlindon, Pamela Nathanson, and Chris Feudtner, The Journal of Clinical Ethics 28, no. 3 (Fall 2017): 222-7.
Some of the most difficult clinical ethics consultations involve patients who have both medical and mental health needs, as these cases can result in considerable moral distress on the part of the bedside staff. In this article we examine the issues that such consults raise through the illustrative example of a particular case: several years ago our ethics consultation service received a request from a critical care attending physician who was considering a rarely performed psychosurgical intervention to address intractable and life-threatening agitation and aggression in an adolescent patient for whom standard treatments had proven unsuccessful. We consider strategies that may be useful in addressing not only the ethical dilemmas or the clinical problems, but also the emotional, social, and moral distress that arise in delivering care in such complex cases, in which standard routine practices of care have been exhausted. In addition, we explore the processes that led to this situation and suggest ways to promote early recognition and intervention for similar cases in the future.
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At the Intersection of Faith, Culture, and Family Dynamics: A Complex Case of Refusal of Treatment for Childhood Cancer
Amy E. Caruso Brown, The Journal of Clinical Ethics 28, no. 3 (Fall 2017): 228-35.
Refusing treatment for potentially curable childhood cancers engenders much discussion and debate. I present a case in which the competent parents of a young Amish child with acute myeloid leukemia deferred authority for decision making to the child’s maternal grandfather, who was vocal in his opposition to treatment. I analyze three related concerns that distinguish this case from other accounts of refused treatment.
First, I place deference to grandparents as decision makers in the context of surrogate decision making more generally.
Second, the maternal grandfather’s ardent refusal of treatment and his rationale appeared to be inconsistent with the beliefs expressed by other family members and by members of the same Amish community, leading members of the medical team to question whether refusal of treatment should be treated differently when it appears to be based on the idiosyncratic beliefs of an individual rather than on community-wide values.
Third, the medical team perceived tension and dissension between the nonverbal behavior of some family members and the verbal statements made by the maternal grandfather, leading the team to question the parents’ true wishes and debate how to weigh nonverbal and indirect forms of communication.
Finally, building upon the conclusions of these queries, I explore whether, if the child’s prognosis was less favorable or if he were to relapse later, the maternal grandfather should have been permitted to drive a decision to refuse further treatment.
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The Angry Amish Grandfather: Cultural Competence and Empathy: A Case Commentary
James L. Benedict, The Journal of Clinical Ethics 28, no. 3 (Fall 2017): 236-8.
Crosscultural encounters are common in the delivery of healthcare, and cultural differences may contribute to misunderstandings and ethical conflict. Encounters between members of the Amish ethno-religious group and modern, science-based healthcare providers hold a high potential for misunderstanding and conflict because the Amish stridently maintain a countercultural outlook and they approach such encounters with suspicion and anxiety. This commentary on the case presented by Amy E. Caruso Brown, MD,1 involving a grandfather’s resistance to treating a child with leukemia commends this physician for successfully managing the case and deriving important insights from reflection upon it. It argues, however, that the level of conflict most likely would have been reduced if the care team had made more of an effort to listen to the grandfather and acknowledge the emotional trauma he had suffered.
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Research
The Ethics of Research in Lower Income Countries: Double Standards Are Not the Problem
David S. Wendler, The Journal of Clinical Ethics 28, no. 3 (Fall 2017): 239-46.
Discussion of the ethics of clinical trials in lower income countries has been dominated by concern over double standards. Most prominently, clinical trials of interventions that are less effective than the worldwide best treatment methods typically are not permitted in higher income countries. Commentators conclude that permitting such trials in lower income countries involves an ethical double standard. Despite significant attention to this concern, and its influence over prominent guidelines for research in lower income countries, there has been little analysis of what constitutes an ethical double standard in clinical research. The present article attempts to address this gap in the literature. This analysis finds that ethical double standards involve a kind of disrespect, and yields a three-step decision procedure for evaluating when trials of less than the worldwide best methods raise this concern. Application of this procedure reveals that permitting these trials in lower income countries rarely involves an ethical double standard. Instead, the real challenge is determining when clinical trials of interventions that are less effective than the worldwide best represent a permissible and effective response to differences in access to healthcare between higher income and lower income countries. To protect research subjects, without blocking clinical trials that have the potential to improve health in lower income countries, research review committees and other stakeholders should focus on this issue, not on ethical double standards.
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Perspectives
Universal Health Care: The Cost of Being Human
Roger Strair, The Journal of Clinical Ethics 28, no. 3 (Fall 2017): 247-9.
In this article I argue that the biological processes that make us human have error rates that distribute illness on a no-fault basis. I propose this as an ethical foundation for universal healthcare.
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Vaccine Exemptions and the Church-State Problem
Dena S. Davis, The Journal of Clinical Ethics 28, no. 3 (Fall 2017): 250-4.
All of the 50 states of the United States have laws governing childhood vaccinations; 48 allow for religious exemptions, while 19 also offer exemptions based on some sort of personal philosophy. Recent disease outbreaks have caused these states to reconsider philosophical exemptions. However, we cannot, consistent with the U.S. Constitution, give preference to religion by creating religious exemptions only. The Constitution requires states to put religious and nonreligious claims on equal footing. Given the ubiquity of nonreligious objections to vaccination, I conclude that the best response is to remove all exemptions, as two states have already done. But removing exemptions should not end our concern for children. Removing exemptions only bars children from public schools; it still leaves them unvaccinated, a danger to others, and reliant on whatever nonpublic schooling is available. If public school attendance is not enough of an incentive for vaccine reluctant parents, perhaps we should look into stronger measures.
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The Journal of Clinical Ethics, 28, number 2, Summer 2017
At the Bedside
Going
from What Is, to What Should Be, to Care Better for Our Patients and
Families
Edmund G. Howe, The Journal of Clinical Ethics 28, no. 2 (Summer 2017): 85-96.
This piece discusses ways in which clinicians may go beyond their usual practices. These include exploring the limits of old laws, consulting with colleagues and ethics committees earlier and more often, and giving patients’ family members new choices they didn’t have previously. This could include asking patients and family members whether clinicians should prioritize staying in the single, unconflicted role of serving patients and families, even when this might preclude simultaneously serving another interest, for example, that of a hospital.
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Features
Controversies in Cardiopulmonary Death
Michael G. Fara, Breehan Chancellor, Aaron S. Lord, and Ariane Lewis, The Journal of Clinical Ethics 28, no. 2 (Summer 2017): 97-101.
We describe two unusual cases of cardiopulmonary death in mechanically ventilated patients in the neurological intensive care unit. After cardiac arrest, both patients were pulseless for a protracted period. Upon extubation, both developed agonal movements (gasping respiration) resembling life. We discuss these cases and the literature on the ethical and medical controversies associated with determining time of cardiopulmonary death. We conclude that there is rarely a single moment when all of a patient’s physiological functions stop working at once. This can pose a challenge for determining the exact moment of death.
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How Do Healthcare Providers Feel About Family Presence During Cardiopulmonary Resuscitation?
Alicia Pérez Blanco, The Journal of Clinical Ethics 28, no. 2 (Summer 2017): 102-16.
The presence of patients’ families during cardiopulmonary resuscitation (CPR) is a controversial topic, due to its repercussions for clinical practice. While family members’ presence may help them to overcome their grief, it could be detrimental, as it may case posttraumatic stress disorder (PTSD), and there is the possibility that family members may interfere with the procedure. For these reasons, families’ presence during CPR has rejected by some healthcare providers.
To research concerns about families’ presence among providers dealing with CPR in the Fundación Hospital Alcorcón (Madrid), I performed this study. Of the 190 providers surveyed, 115 submitted a complete questionnaire. The most frequently reported concerns were interference (78.3 percent of respondents), and PTSD (69.6 percent of respondents). Fewer pediatric providers were concerned about PTSD than other providers (41.2% percent versus 74.5 percent, p = 0.01). Providers were reluctant to offer families the option of being present unless they had requested it, and would only permit it under certain conditions. Having a staff member to support the family was of great value to most respondents. The author believes families have a negative right to be present during CPR and so should be invited to stay.
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A Patient (Not) Alone
Lauren Sydney Flicker, The Journal of Clinical Ethics 28, no. 2 (Summer 2017): 117-21.
This case analysis examines questions that arise when an ethically appropriate recommendation initially appears to be in conflict with the legally appropriate recommendation. The case involves a dying, incapacitated octogenarian who had friends who were willing to share her values, but not to make decisions on her behalf. These circumstances put the patient in the unique position of being legally considered a “patient alone,” but who was ethically like a patient with surrogates—distinctions that are crucial when making end-of-life decisions under the New York Family Health Care Decisions Act. A strict interpretation of the law initially seemed to be in conflict with an ethically appropriate outcome. By gaining a deeper understanding of the patient from those who cared about her, however, and by considering a broader interpretation of the law, an outcome was reached that worked within the framework of the law and honored the patient’s reported values.
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The Role of Relational Knowing in Advance Care Planning
Kate Robins-Browne, Kelsey Hegarty, Marilys Guillemen, Paul Komesaroff, and Victoria Palmer,
The Journal of Clinical Ethics 28, no. 2 (Summer 2017): 122-34.
Medical decision making when a patient cannot participate is complicated by the question of whose voice should be heard. The most common answer to this question is that “autonomy” is paramount, and therefore it is the voice of the unwell person that should be given priority. Advance care planning processes and practices seek to capture this sentiment and to allow treatment preferences to be documented and decision makers to be nominated. Despite good intentions, advance care planning is often deficient because it is unable to facilitate a relational approach to decision making in cases when the patient’s competence is reduced. In this article we present findings from a study of the ways in which older people and their significant others understand decision making in such circumstances. Critical to the participants’ understanding was the emergent concept of “relational knowing,” a concept that is poorly articulated in the advance care planning literature. Our findings suggest that the dominant understanding of decision making in conditions of impaired competence is incomplete and obscures much of what matters to people. We conclude that, having recognized a broader set of ethical concerns, it is necessary to develop a relational and narrative based approach that applies in appropriate settings.
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Knowing About Others: On "The Role of Relational Knowing in Advance Care Planning"
Jamie Lindemann Nelson, The Journal of Clinical Ethics 28, no. 2 (Summer 2017): 135-6.
Kate Robins-Browne and her colleagues have written a conceptually daring, empirically grounded article that is rich in scholarship and just conceivably might have a salutary effect on the theory and practice of advance care planning. It is, alas, just as easy to believe that its appreciation will be restricted to like-minded theorists. Writing from a posture of great admiration for this article’s agenda and achievements, I will consider why non-relationally-based understanding of deciding for others are so enduring, and what might be done about that.
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Developing Clinical Ethics Consultation and Committees
Structure, Operation, and Experience of Clinical Ethics Consultation 2007-2013: A Report from the Massachusetts General Hospital Optimum Care Committee
Ellen M. Robinson, Wendy Cadge, Kimberly Erler, Sharon Brackett, Julia Bandini, Alexandra Cist,
M. Cornelia Cremens, Eric L. Krakauer, and Andrew M. Courtwright, The Journal of Clinical Ethics
28, no. 2 (Summer 2017): 137-52.
We describe the structure, operation, and experience of the Massachusetts General Hospital ethics committee, formally called the Edwin H. Cassem Optimum Care Committee, from January 2007 through December 2013. Founded in 1974 as one of the nation’s first hospital ethics committees, this committee has primarily focused on the optimum use of life-sustaining treatments. We outline specific sociodemographic and clinical characteristics of consult patients during this period, demographic differences between the adult inpatient population and patients for whom the ethics committee was consulted, and salient features of the consults themselves. We include three case studies that illustrate important consult themes during this period. Our findings expand knowledge about the structure and workings of hospital ethics committees and illustrate how one ethics committee has developed and utilized policies on end-of-life care. More generally, we model a sociological approach to the study of clinical ethics consultation that could be utilized to contextualize institutional practices over time.
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Development of a Clinical Ethics Committee De Novo at a Small Community Hospital by Addressing Needs and Potential Barriers
Bonnie H. Arzuaga, The Journal of Clinical Ethics 28, no. 2 (Summer 2017): 153-8.
Hospital ethics committees are common, but not universal, in small hospitals. A needs assessment was completed at a 155-bed community hospital in order to adapt an academic tertiary center model for a clinical ethics committee to fit the needs of the small hospital community. Of 678 questionnaires distributed, 209 were completed. Data suggested that clinical staff frequently experienced ethical dilemmas. Significantly more nonphysicians indicated that they would utilize a consultation service, if available, compared to physicians (p = 0.0067). The data also indicated that the majority of staff (>80 percent) desired more education in clinical ethics. Physicians preferred annual or bi-annual hospital-wide grand rounds, compared to nonphysicians, who preferred more frequent department-based teaching (p < 0.001). The data presented in this article were used to subsequently develop a clinical ethics support committee, the process of which is also described.
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Do Not Resuscitate, with No Surrogate and No Advance Directive: An Ethics Case Study
Jamie Diamond, Umesh Gidwani, and Rosamond Rhodes, The Journal of Clinical Ethics 28, no. 2 (Summer 2017): 159-62.
Do-not-resuscitate (DNR) orders are typically signed by physicians in conjunction with patients or their surrogate decision makers in order to instruct healthcare providers not to perform cardiopulmonary resuscitation (CPR). Both the medical literature and CPR guidelines fail to address when it is appropriate for physicians to sign DNR orders without any knowledge of a patient’s wishes. We explore the ethical issues surrounding instituting a two-physician DNR for a dying patient with multiple comorbidities and no medical record on file, no advance directives, and no surrogate decision maker. Through this case we also highlight the issues of poor prognostication and the reversal of a DNR in such circumstances.
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Law
Legal Briefing: Unwanted Cesareans and Obstetric Violence
Thaddeus Mason Pope, The Journal of Clinical Ethics 28, no. 2 (Summer 2017): 163-73.
A capacitated pregnant woman has a nearly unqualified right to refuse a cesarean section. Her right to say “no” takes precedence over clinicians’ preferences and even over clinicians’ concerns about fetal health. Leading medical societies, human rights organizations, and appellate courts have all endorsed this principle. Nevertheless, clinicians continue to limit reproductive liberty by forcing and coercing women to have unwanted cesareans. This “Legal Briefing” reviews recent court cases involving this type of obstetric violence. I have organized these court cases into the following six categories:
1. Epidemic of Unwanted Cesareans
2. Court-Ordered Cesareans
3. Physician-Coerced Cesareans
4. Physician-Ordered Cesareans
5. Cesareans for Incapacitated Patients
6. Cesareans for Patients in a Vegetative State or Who Are Brain Dead
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The Journal of Clinical Ethics, 28, number 1, Spring 2017
At the Bedside
Fourteen
Important Concepts Regarding Moral Distress
Edmund G. Howe, The Journal of Clinical Ethics 28, no. 1 (Spring 2017): 3-14.
I suggest that we may want to strive, over time, to change our present professional-cultural view, from one that sees an expression of moral distress as a threat, to a professional-cultural view that welcomes these challenges. Such an effort to better medicine would not only include dissenting clinicians, but patients (and their loved ones) as well.
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Special Section on Moral Distress
Harnessing the Promise of Moral Distress: A Call for Re-Orientation
Alisa Carse and Cynda Hylton Rushton, The Journal of Clinical Ethics 28, no. 1 (Spring 2017): 15-29.
Despite over three decades of research into the sources and costs of what has become an “epidemic” of moral distress among healthcare professionals, spanning many clinical disciplines and roles, there has been little significant progress in effectively addressing moral distress. We believe the persistent sense of frustration, helplessness, and despair still dominating the clinical moral distress narrative signals a need for re-orientation in the way moral distress is understood and worked with. Most fundamentally, moral distress reveals moral investment and energy. It is the troubled call of conscience, an expression of fidelity to moral commitments seen as imperiled or compromised.
It is crucial that we find ways to empower clinicians in heeding this call—to support clinicians’ moral agency and voice, foster their moral resilience, and facilitate their ability to contribute to needed reform within the organizations and systems in which they work. These objectives must inform creative expansion in the design of strategies for addressing moral distress in the day-to-day of clinical practice. We include suggestions about promising directions such strategies might take in the hope of spurring further innovation within clinical environments.
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Focus More on Causes and Less on Symptoms of Moral Distress
Tessy A. Thomas and Laurence B. McCullough, The Journal of Clinical Ethics 28, no. 1 (Spring 2017): 30-2.
In this commentary on Carse and Rushton’s call for reorientation of moral distress, we state agreement with the authors that the discourse of moral distress should refocus on the moral components of integrity. We then explain how our philosophical taxonomy of moral distress, mentioned by the authors, appeals to moral integrity. In this process, we clarify our taxonomy’s appeal to Aristotle’s concept of akrasia. We conclude by offering support of Carse and Rushton’s challenge to organizations to strengthen moral integrity by fostering resilience.
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Using Moral Distress for Organizational Improvement
James E. Sabin, The Journal of Clinical Ethics 28, no. 1 (Spring 2017): 33-6.
Moral distress is a major problem for nurses, other clinicians, and the health system itself. But if properly understood and responded to, it is also a promising guide for healthcare improvement. When individuals experience moral distress or burnout, their reports must be seen as crucial data requiring careful attention to the individuals and to the organization. Distress and burnout will often point to important opportunities for system improvements, which may in turn reduce the experience of distress. For this potential virtuous cycle to happen, individuals must be able to articulate their concerns without fear of retribution, and organizational leaders must be able to listen in an undefensive, improvement-oriented manner.
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Looking at the Positive Side of Moral Distress: Why It’s a Problem
Elizabeth G. Epstein and Ashley R. Hurst, The Journal of Clinical Ethics 28, no. 1 (Spring 2017): 37-41.
Moral distress, is, at its core, an organizational problem. It is experienced on a personal level, but its causes originate within the system itself. In this commentary, we argue that moral distress is not inherently good, that effective interventions must address the external sources of moral distress, and that while there is a place for resilience in the healthcare professions, it cannot be an effective antidote to moral distress.
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Moral Distress: Conscious and Unconscious Feelings
William J. Winslade, The Journal of Clinical Ethics 28, no. 1 (Spring 2017): 42-3.
In analyzing moral distress, perhaps greater attention should be given to the possible implicit sources of feelings of distress, as well as explicit sources.
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Features
When Not to Rescue: An Ethical Analysis of Best Practices for Cardiopulmonary Resuscitation and Emergency Cardiac Care
Nancy S. Jecker and Arthur R. Derse, The Journal of Clinical Ethics 28, no. 1 (Spring 2017): 44-56.
It is now a default obligation to provide cardiopulmonary resuscitation (CPR), in the absence of knowledge of a patient’s or surrogate’s wishes to the contrary. We submit that it is time to re-evaluate this position. Attempting CPR should be subject to the same scrutiny demanded of other medical interventions that involve balancing a great benefit against grievous harms.
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A Framework for Ethical Decision Making in the Rehabilitation of Patients with Anosognosia
Anna Rita Egbert,The Journal of Clinical Ethics 28, no. 1 (Spring 2017): 57-66.
Currently, the number of patients diagnosed with impaired self-awareness of their own deficits after brain injury—anosognosia—is increasing. One reason is a growing understanding of this multifaceted phenomenon. Another is the development and accessibility of alternative measurements that allow more detailed diagnoses. Anosognosia can adversely affect successful rehabilitation, as often patients lack confidence in the need for treatment. Planning such treatment can become a complex process full of ethical dilemmas.
To date, there is no systematic way to deal with different aspects of anosognosia rehabilitation planning. This is the first article to present a framework for ethical decision making in establishing rehabilitation plans that are focused on increasing patients’ self-awareness of their own deficits after brain injury. It concentrates especially on addressing the ethical dilemmas that may arise, and describes stepwise procedures that can be applied to distinct theoretical approaches, as well as diagnostic and rehabilitation methods. To show the flexibility of the use of this framework, alternative approaches are discussed.
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Case and Analysis
Family Loyalty as a Cultural Obstacle to Good Care: The Case of Mrs. Indira
Shahla Siddiqui, The Journal of Clinical Ethics 28, no. 1 (Spring 2017): 67-9.
What is the responsibility of the physician when a capacitated patient assigns decision-making authority to a surrogate who does not act in the patient’s best interest?
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Complexities in Caregiving: Comforts, Cultures, Countries, Conversations, and Contracts
Shenbagam Dewar and Rajan Dewar, The Journal of Clinical Ethics 28, no. 1 (Spring 2017): 70-3.
As depicted in the case of Mrs. Indira, decision making by patients and surrogates may be complicated by multiple factors, including care, comfort, country, and culture.
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Law
Legal Briefing: New Penalties for Ignoring Advance Directives and Do-Not-Resuscitate Orders
Thaddeus Mason Pope , The Journal of Clinical Ethics 28, no. 1 (Spring 2017): 74-81.
Patients in the United States have been subject to an ever-growing “avalanche” of unwanted medical treatment. This is economically, ethically, and legally wrong. As one advocacy campaign puts it: “Patients should receive the medical treatments they want. Nothing less. Nothing more.” First, unwanted medical treatment constitutes waste (and often fraud or abuse) of scarce healthcare resources. Second, it is a serious violation of patients’ autonomy and self-determination. Third, but for a few rare exceptions, administering unwanted medical treatment contravenes settled legal rules and principles. This “Legal Briefing” describes a central and growing role for the law. Specifically, courts and agencies have increasingly imposed penalties on healthcare providers who deliberately or negligently disregard advance directives and DNR (do-not-resuscitate) orders. I group these legal developments into the following five categories:
1. Five Types of Unwanted Medical Treatment
2. State and Federal Duties to Follow Advance Directives
3. Doctors Hospital of Augusta v. Alicea
4. Other Lawsuits for Ignoring Advance Directives
5. Administrative Penalties for Ignoring Advance Directives.
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The Journal of Clinical Ethics, Winter 2016, Volume 27, Number 4
At the Bedside
New
Paradigms in Medical Ethics
Edmund G. Howe
As new technologies develop, new ethical paradigms may be needed. This article considers several examples, such as stopping venoarterial extracorporeal membrane oxygenation (VA-ECMO), treating patients who are in a locked-in-like state who have awareness, purposefully deceiving patients who have dementia, meeting the needs of transgender persons, showing loved ones patients’ wounds, and doing research on controlled substances. I suggest that clinicians should identify the practices underlying their value assumptions so they can alter their assumptions when this might improve the care they offer to their patients.
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Features
A Survey of Physicians’ Attitudes toward Decision-Making Authority for Initiating and Withdrawing VA-ECMO: Results and Ethical Implications for Shared Decision Making
Ellen C. Meltzer, Natalia S. Ivascu, Meredith Stark, Alexander V. Orfanos, Cathleen A. Acres, Paul J. Christos, Thomas Mangione, and Joseph J. Fins
Objective: Although patients exercise greater autonomy than in the past, and shared decision making is promoted as the preferred model for doctor-patient engagement, tensions still exist in clinical practice about the primary locus of decision-making authority for complex, scarce, and resource-intensive medical therapies: patients and their surrogates, or physicians. We assessed physicians’ attitudes toward decisional authority for adult venoarterial extracorporeal membrane oxygenation (VA-ECMO), hypothesizing they would favor a medical locus.
Design, Setting, Participants: A survey of resident/fellow physicians and internal medicine attendings at an academic medical center, May to August 2013.
Measurements: We used a 24-item, internet-based survey assessing physician-respondents’ demographic characteristics, knowledge, and attitudes regarding decisional authority for adult VA-ECMO. Qualitative narratives were also collected.
Main Results: A total of 179 physicians completed the survey (15 percent response rate); 48 percent attendings and 52 percent residents/fellows. Only 32 percent of the respondents indicated that a surrogate’s consent should be required to discontinue VA-ECMO; 56 percent felt that physicians should have the right to discontinue VA-ECMO over a surrogate’s objection. Those who self-reported as “knowledgeable” about VA-ECMO, compared to those who did not, more frequently replied that there should not be presumed consent for VA-ECMO (47.6 percent versus 33.3 percent, p = 0.007), that physicians should have the right to discontinue VA-ECMO over a surrogate’s objection (76.2 percent versus 50 percent, p = 0.02) and that, given its cost, the use of VA-ECMO should be restricted (81.0 percent versus 54.4 percent, p = 0.005).
Conclusions: Surveyed physicians, especially those who self-reported as knowledgeable about VA-ECMO and/or were specialists in pulmonary/critical care, favored a medical locus of decisional authority for VA-ECMO. VA-ECMO is complex, and the data may (1) reflect physicians’ hesitance to cede authority to presumably less knowledgeable patients and surrogates, (2) stem from a stewardship of resources perspective, and/or (3) point to practical efforts to avoid futility and utility disputes. Whether these results indicate a more widespread reversion to paternalism or a more circumscribed usurping of decisional authority occasioned by VA-ECMO necessitates further study.
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Covert Administration of Medication to Persons with Dementia: Exploring Ethical Dimensions
Jenny M. Young and David Unger
The literature, although sparse, reports that covert administration of all types of medications is prevalent in nursing homes. Whether it is ever ethically defensible, however, to administer medications covertly to persons with significant dementia is a complex and contentious question. Some scholars contend that deception is inherently wrong and is never acceptable, while others believe that deception is intrinsic to providing care to persons with dementia. With an aim to begin to reconcile these polarized positions and to objectively study this contentious issue, the authors undertake an ethical analysis of the covert administration of medications by utilizing the principles of respect for autonomy, nonmaleficence, beneficence, and justice. Our approach examines covert administration within the context of all persons with significant dementia who are administered medications, and is aimed at providing ethical and practical guidance to clinicians who, when confronted with a patient who refuses medication, must choose the “least bad” option from among various courses of action, all of which have ethical implications. Components of a possible guideline for practice are proposed.
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Covert Medications: Act of Compassion or Conspiracy of Silence?
Robert C. Macauley
As the population in the United States gets older, more people suffer from dementia, which often causes neuropsychiatric symptoms such as agitation and paranoia. This can lead patients to refuse medications, prompting consideration of covert administration (that is, concealing medication in food or drink). While many condemn this practice as paternalistic, deceptive, and potentially harmful, the end result of assuming the “moral high ground” can be increased suffering for patients and families. This article addresses common criticisms of covert medication and presents a detailed algorithm by which to determine whether the practice is ethically permissible in specific cases. It also explores why so little attention has been paid in the U.S. to this presumably common practice, and reviews professional statements from Europe that endorse the practice. Finally, it presents a compelling argument for the role of Ulysses clauses in advance care planning, not only for patients with psychiatric illness but also for those who may suffer from dementia, which is far more common.
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Stakeholders’ Views on Barriers to Research on Controversial Controlled Substances
Evelyn Rhodes, Michael Andreae, Tyler Bourgiose, Debbie Indyk, Rosamond Rhodes, and Henry Sacks
Many diseases and disease symptoms still lack effective treatment. At the same time, certain controversial Schedule I drugs, such as heroin and cannabis, have been reputed to have considerable therapeutic potential for addressing significant medical problems. Yet, there is a paucity of U.S. clinical studies on the therapeutic uses of controlled drugs. For example, people living with HIV/AIDS experience a variety of disease- and medication-related symptoms. Their chronic pain is intense, frequent, and difficult to treat. Nevertheless, clinical trials of compassionate management for their chronic symptoms, which should be a research priority, are stymied.
We employed qualitative methods to develop an understanding of the barriers to research on potential therapeutic uses of Schedule I drugs so that they might be addressed. We elicited the perspectives of key stakeholder groups that would be involved in such studies: people living with HIV/AIDS, clinicians, and members of institutional review boards. As we identified obstacles to research, we found that all of the stakeholder groups arrived at the same conclusion, that clinical research on the therapeutic potential of these drugs is ethically required.
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The Evolution of American Hospital Ethics Committees: A Systematic Review
Andrew Courtwright and Martha Jurchak
During the 1970s and 1980s, legal precedent, governmental recommendations, and professional society guidelines drove the formation of hospital ethics committees (HECs). The Joint Commission on Accreditation of Health Care Organization’s requirements in the early 1990s solidified the role of HECs as the primary mechanism to address ethical issues in patient care. Because external factors drove the rapid growth of HECs on an institution-by-institution basis, however, no initial consensus formed around the structure and function of these committees. There are now almost 40 years of empirical studies on the composition, administration, and activities of HECs in the United States. We conducted a systematic review of the available empirical literature on HECs to describe their evolution. As HECs changed over time, they increased their total number of members and percentage of members from nursing and the community. Although physicians increasingly chaired these committees, their presence as a percentage of overall members declined. The percentage of administrative members remained steady, although committees became increasingly likely to have at least one administrative member. HECs were also increasingly likely to report to an administrative body or to the board of trustees or directors rather than to the medical staff. Finally, consultation volume increased steadily over time. There has not, however, been a national survey of the composition of ethics committees, their administration, or volume of consultation in more than 10 years, despite increasing calls for professional standards and quality improvement assessments among HECs.
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Cultivating Administrative Support for a Clinical Ethics Consultation Service
Courtenay R. Bruce, Mary A. Majumder, Ashley Stephens, Janet Malek, and Amy McGuire
Hospital administrators may lack familiarity with what clinical ethicists do (and do not do), and many clinical ethicists report receiving inadequate financial support for their clinical ethics consultation services (CECSs). Ethics consultation is distinct in that it is not reimbursable by third parties, and its financial benefit to the hospital may not be quantifiable. These peculiarities make it difficult for clinical ethicists to resort to tried-and-true outcome-centered evaluative strategies, like cost reduction or shortened length of stay for patients, to show a “need” for ethics consultation. Likewise, it can be difficult for clinical ethicists to “speak the same language” as healthcare administrators and managers, which, in turn, means that CECSs run the risk of being unable to demonstrate value to those who pay for the service.
The purpose of this descriptive article is to provide practical guidance to clinical ethicists and program directors on how to cultivate administrative support for a CECS. Specifically, we discuss two elements that clinical ethics leaders must critically appraise and successfully argue to meet the expectations of administrators—the value of a CECS and its fit in clinical workflow.
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Cases from the Cleveland Clinical Foundation
What’s Knowledge Got to Do with It? Ethics, Epistemology, and Intractable Conflicts in the Medical Setting
Bryan Kibbe and Paul J. Ford
This article utilizes the case of Ms H. to examine the contrasting ways that surrogate decision makers move from simply hearing information about the patient to actually knowing and understanding the patient’s medical condition. The focus of the case is on a family’s request to actually see the patient’s wounds instead of being told about the wounds, and the role of clinical ethicists in facilitating this request. We argue that clinical ethicists have an important role to play in the work of converting information into knowledge and that this can serve as a valuable way forward in the midst of seemingly intractable conflicts in the medical setting.
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Perspective
Medical Futility: A Contemporary Review
Ellen Coonan
As medical technology has advanced, the question of medical futility has become a topic of intense debate both within the medical community and within society as a whole. However, a unanimous definition thereof is yet to be decided—some commentators are sceptical as to whether an agreement will ever be reached—and this continues to lead to difficulties, tension, and even legal action when a treating physician disagrees with a patient and/or a patient’s family regarding care and treatment options. Although living in a pluralistic society presents one of the major reasons as to why, despite 30 years of intense discussion, no consensus has been made; the issue of medical futility will always be complex as it is, by nature, multifaceted, and numerous elements—including possible risks, evidence of the probability of benefit, the wishes of the patient (and family), professional standards, and cost—interact. Nevertheless, the global medical community has seen the development of two distinctly different approaches to medical futility: one in which the autonomy of patients is of paramount importance in the decision whether or not to pursue a treatment; and one in which beneficence and primum non nocere—first do no harm—are almost entirely the clinician’s prerogative, and whereby he/she has a duty to refuse any treatment for which the potential risks outweigh the potential benefits for the patient. Recently, however, there has been a rejection of this dichotomous view of medical futility and the apparent “power struggle” between physician and patient, and a positive movement towards a more collaborative decision-making process that highlights the necessity of communication, aiming to result in the obtainment of the best possible outcome for each patient as an individual.
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The Journal of Clinical Ethics, Fall 2016, Volume 27, Number 3
At the Bedside
Harmful Emotional Responses that Patients and
Physicians May Have When their Values Conflict
Edmund G. Howe
One of the most difficult decisions a clinician may face is when, if ever, to decline what a patient wants, based on the clinician’s own moral conscience. Regardless of what the clinician decides, the outcome may be deeply emotionally painful for both parties, and the pain may last. I will discuss this pain, how it occurs, and what we can do to try to reduce it before, during, and after a conflict arises. Approaches include explaining how we are like the patient or doctor, that no one is perfect, and that what we do is not who we are.
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Features
Moral Agency, Moral Imagination, and Moral Community: Antidotes to Moral Distress
Terri Traudt, Joan Liaschenko, and Cynthia Peden-McAlpine
Moral distress has been covered extensively in the nursing literature and increasingly in the literature of other health professions. Cases that cause nurses’ moral distress that are mentioned most frequently are those concerned with prolonging the dying process. Given the standard of aggressive treatment that is typical in intensive care units (ICUs), much of the existing moral distress research focuses on the experiences of critical care nurses. However, moral distress does not automatically occur in all end-of-life circumstances, nor does every critical care nurse suffer its damaging effects. What are the practices of these nurses? What specifically do they do to navigate around or through the distressing situations? The nursing literature is lacking an answer to these questions. This article reports a study that used narrative analysis to explore the reported practices of experienced critical care nurses who are skilled at and comfortable working with families and physicians regarding the withdrawal of aggressive treatment. A major finding was that these nurses did not report experiencing the damaging effects of moral distress as described in the nursing literature. The verbal communication and stated practices relevant to this finding are organized under three major themes: (1) moral agency, (2) moral imagination, and (3) moral community. Further, a total of eight subthemes are identified. The practices that constitute these themes and subthemes are further detailed and discussed in this article. Understanding these practices can help mitigate critical care nurses’ moral distress.
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Towards a New Narrative of Moral Distress: Realizing the Potential of Resilience
Cynda Hylton Rushton and Alisa Carse
Terri Traudt, Joan Liaschenko, and Cynthia Peden-McAlpine’s study contributes to a much-needed reorientation in thinking about and working with the challenges of moral distress. In providing a vital example of nurses able to navigate morally distressing situations in positive and constructive ways, and offering an analysis of the component elements of these nurses’ success, the study helps identify promising directions we might take in addressing the epidemic of moral distress. It also invites important questions, concerning the challenges faced by clinicians who do not who work in healthy “moral communities,” who lack the ethical competencies, and who don’t have the presumptive authority and recognition enjoyed by the seasoned clinicians studied here. We explore some of these questions, and suggest ways we might build on the insights of Traudt and colleagues’ study.
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Special Section: Physicians’ Exercise of Conscience: Commentaries on the
AMA’s Code of Medical Ethics
Report by the American Medical Association’s Council on Ethical and Judicial Affairs on Physicians’ Exercise of Conscience
BJ Crigger, Patrick W. McCormick, Stephen L. Brotherton, and Valarie Blake
As practicing clinicians, physicians are expected to uphold the ethical norms of their profession, including fidelity to patients and respect for patients’ self-determination. At the same time, as individuals, physicians are moral agents in their own right and, like their patients, are informed by and committed to diverse cultural, religious, and philosophical traditions and beliefs. In some circumstances, the expectation that physicians will put patients’ needs and preferences first may be in tension with the need to sustain the sense of moral integrity and continuity that grounds a physician’s personal and professional life.
This article examines the implications for patients, physicians, and the medical profession when tensions arise between a physician’s professional commitments and his or her deeply held personal moral beliefs. It offers guidance on when a physician’s professional commitments should outweigh personal beliefs as well as when physicians should have freedom to act according to the dictates of conscience while still protecting patients’ interests.
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Accommodating Conscientious Objection in Medicine—Private Ideological Convictions Must Not Trump Professional Obligations
Udo Schuklenk
The opinion of the American Medical Association (AMA) Council on Ethical and Judicial Affairs (CEJA) on the accommodation of conscientious objectors among medical doctors aims to balance fairly patients’ rights of access to care and accommodating doctors’ deeply held personal beliefs. Like similar documents, it fails. Patients will not find it persuasive, and neither should they. The lines drawn aim at a reasonable compromise between positions that are not amenable to compromise. They are also largely arbitrary. This article explains why that is the case. The view that conscientious objection accommodation has no place in modern medicine is defended.
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Professional Ethics, Personal Conscience, and Public Expectations
Claudia E. Haupt
Examining to what extent physicians are, or ought to be, defined by the profession when giving advice to patients, this commentary seeks to offer a better understanding of the potential conflicts that the American Medical Association’s (AMA’s) “Opinion 1.1.7, Physician Exercise of Conscience,” addresses. This commentary conceptualizes the professions as knowledge communities, and situates the physician-patient relationship within this larger conceptual framework. So doing, it sheds light on how and when specialized knowledge is operationalized in professional advice-giving. Physicians communicate the knowledge community’s insights to the patient. Thus, departures from professional knowledge as a matter of the professional’s personal conscience are appropriately circumscribed by the knowledge community.
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Who Judges Harm?
Nadia N. Sawicki
The American Medical Association’s (AMA’s) “Opinion 1.1.7, Physician Exercise of Conscience” attempts to help physicians strike a reasonable balance between their own conscientious beliefs and their patients’ medical interests in an effort to minimize harms to both. However, some ambiguity still remains as to whether the severity of harms experienced by physicians and patients is to be assessed externally (by policy makers or by a professional body like the AMA), or internally by the subjects of those harms. Conflicts between conscientious physicians’ self-assessments of the moral harm associated with various actions and the AMA’s external assessments of such harms are likely to lead to challenges in the implementation of some provisions of its opinion. This commentary argues, however, that provisions (b) and (e) of the opinion, which describe the information physicians should provide about their own scope of practice and about the existence of controversial procedures, are less likely to conflict with physicians’ subjective assessments of moral harm, and therefore will face fewer challenges in implementation.
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Action Steps and Solutions for Physicians’ Exercise of Conscience
Eliza Blanchard and Lynn Stoller
Conscience can influence physicians’ interactions with patients in myriad ways and, by extension, can influence the interactions and internal dynamics of a health care team. The AMA’s opinion around physicians’ exercise of conscience appropriately balance the obligations physicians have to their patients and profession, and the rights of physicians as moral agents to exercise their conscience. While the opinion is an effective starting point, further guidance is necessary to clarify the process by which physicians should identify, manage, and, if necessary, report their conscientious refusals to patients, supervisors, or colleagues. In addition to laying out a proposed process for identifying and managing issues of conscience, this article will use relevant and timely examples to help clarify how a physician could apply this process in an instance of conscientious refusal.
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Conscientious Objection: Widening the Temporal and Organizational Horizons
Armand H. Matheny Antommaria
Conscience can influence physicians’ interactions with patients in myriad ways and, by extension, can influence the interactions and internal dynamics of a health care team. The AMA’s opinion around physicians’ exercise of conscience appropriately balance the obligations physicians have to their patients and profession, and the rights of physicians as moral agents to exercise their conscience. While the opinion is an effective starting point, further guidance is necessary to clarify the process by which physicians should identify, manage, and, if necessary, report their conscientious refusals to patients, supervisors, or colleagues. In addition to laying out a proposed process for identifying and managing issues of conscience, this article will use relevant and timely examples to help clarify how a physician could apply this process in an instance of conscientious refusal.
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Thinking about Conscience
BJ Crigger
The path to consensus about physicians’ exercise of conscience was not linear. It looped back on itself as new insights illuminated earlier deliberations and in turn led to further insights. In particular, coming to agreement about physicians’ responsibility in regard to referral charted a route through many course corrections.
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Law
Legal Briefing: Stopping Nonbeneficial Life-Sustaining Treatment without Consent
Thaddeus Mason Pope and Kristin Kemmerling
In the United States, authoritative legal guidance remains sparse on whether or when clinicians may stop life-sustaining treatment without consent. Fortunately, several significant legislative and judicial developments over the past two years offer some clarity. We group these legal developments into the following seven categories:
1. Lawsuits for Damages
2. Amendments to the Texas Advance Directives Act
3. Constitutional Attack on TADA
4. Legislation Prohibiting Clinicians
5. Legislation Authorizing Clinicians
6. Cases from Canada
7. Cases from the United Kingdom.
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The Journal of Clinical Ethics, Summer 2016, Volume 27, Number 2
At the Bedside
What Do We
Owe Medical Students and Medical Colleagues Who Are Impaired?
Edmund G. Howe
Physicians who are impaired, engage in unprofessional behavior, or violate laws may be barred from further practice. Likewise, medical students may be dismissed from medical school for many infractions, large and small. The welfare of patients and the general public must be our first priority, but when we assess physicians and students who have erred, we should seek to respond as caringly and fairly as possible. This piece will explore how we may do this at all stages of the proceedings physicians and students may encounter. This may include helping them to resume their medical careers if and when this would be sufficiently safe and beneficial for patients.
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Features
Untangling Uncertainty: A Study of the Discourses Shaping Clinical Ethics Consultation as a Professional Practice
Salla Saxén
This qualitative social scientific interview study delves into the ways in which professional vision is constructed in clinical ethics consultation (CEC). The data consist of 11 semi-structured interviews that were conducted with clinical ethics consultants currently working in hospitals in one major urban area in the U.S. The interviews were analyzed with the qualitative research method of critical discourse analysis, with a focus on identifying the cultural structures of knowledge that shape CEC as a professional practice. The discourses were first identified as belonging to two higher discourse categories, order and agency. Order was divided into three lower categories, emotional, managerial, and rational order, and discourses of agency into the lower categories of exploration, technique, deliberation, and distancing. An additional discourse of neutral interaction was identified as a bridging discourse, activated to level tensions emerging out of conflicting goals and agencies embedded in CEC practice. This analysis brings out as its main observation that clinical ethics consultants draw on and shift between potentially ideologically conflicting social positions that can create built-in tensions within the professional domain. The study calls attention to these tensions and suggests for the professional group to discuss the possibility of defining priorities between different kinds of order, identified in this study, that shape the CEC domain.
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How Can Clinical Ethics Committees Take on Organizational Ethics? Some Practical Suggestions
James E. Sabin
Although leaders in the field of ethics have for many years pointed to the crucial role that organizations play in shaping healthcare ethics, organizational ethics remains a relatively undeveloped area of ethics activity. Clinical ethics committees are an important source of potential expertise, but new skills will be required. Clinical ethics committees seeking to extend their purview to organizational issues will have to respond to three challenges—how to gain sanction and support for addressing controversial and sensitive issues, how to develop an acceptable process, and how to make a difference on the ground. The article presents practical suggestions for how clinical ethics committees meet these challenges.
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What Is Everyday Ethics? A Review and a Proposal for an Integrative Concept
Natalie Zizzo, Emily Bell, and Eric Racine
“Everyday ethics” is a term that has been used in the clinical and ethics literature for decades to designate normatively important and pervasive issues in healthcare. In spite of its importance, the term has not been reviewed and analyzed carefully. We undertook a literature review to understand how the term has been employed and defined, finding that it is often contrasted to “dramatic ethics.” We identified the core attributes most commonly associated with everyday ethics. We then propose an integrative model of everyday ethics that builds on the contribution of different ethical theories. This model proposes that the function of everyday ethics is to serve as an integrative concept that (1) helps to detect current blind spots in bioethics (that is, shifts the focus from dramatic ethics) and (2) mobilizes moral agents to address these shortcomings of ethical insight. This novel integrative model has theoretical, methodological, practical, and pedagogical implications, which we explore. Because of the pivotal role that moral experience plays in this integrative model, the model could help to bridge empirical ethics research with more conceptual and normative work.
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Medical Education and Professionalism
The Medical Ethics Curriculum in Medical Schools: Present and Future
Alberto Giubilini, Sharyn Milnes, and Julian Savulescu
In this review article we describe the current scope, methods, and contents of medical ethics education in medical schools in Western English speaking countries (mainly the United Kingdom, the United States, and Australia). We assess the strengths and weaknesses of current medical ethics curricula, and students’ levels of satisfaction with different teaching approaches and their reported difficulties in learning medical ethics concepts and applying them in clinical practice. We identify three main challenges for medical ethics education: counteracting the bad effects of the “hidden curriculum,” teaching students how to apply ethical knowledge and critical thinking to real cases in clinical practice, and shaping future doctors’ right character through ethics education. We suggest ways in which these challenges could be addressed. On the basis of this analysis, we propose practical guidelines for designing, implementing, teaching, and assessing a medical ethics program within a four-year medical course.
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Medical Boards and Fitness to Practice: The Case of Teleka Patrick, MD
Katrina A. Bramstedt
Background: Medical boards and fitness-to-practice committees aim to ensure that medical students and physicians have “good moral character” and are not impaired in their practice of medicine.
Method: Presented here is an ethical analysis of stalking behavior by physicians and medical students, with focus on the case of Teleka Patrick, MD (a psychiatry resident practicing medicine while under a restraining order due to her alleged stalking behavior).
Conclusions: While a restraining order is not generally considered a criminal conviction, stalking behavior is clearly unprofessional and a marker of inappropriate character and fitness, yet the reporting obligations for such matters are complex. Medical schools and training programs that fail to assess, record, and report matters of moral conduct such as this potentially allow impaired students to graduate and enter the work force (unless a robust licensing process identifies them). Patrick’s case should be a wake-up call for medical schools and medical boards to better integrate the professionalism domain into their operations. Further, the professionalism of students and doctors need to be integrated into the legal domain, so that those who are unfit to practice are, in fact, prevented from doing so. Guidance for integration is provided.
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Clinical Ethics Consultation
Gender and Race in the Timing of Requests for Ethics Consultations:
A Single-Center Study
Bethany Spielman, Christine Gorka, Keith Miller, Carolyn A. Pointer, and Barbara Hinze
Background: Clinical ethics consultants are expected to “reduce disparities, discrimination, and inequities when providing consultations,” but few studies about inequities in ethics consultation exist.1 The objectives of this study were (1) to determine if there were racial or gender differences in the timing of requests for ethics consultations related to limiting treatment, and (2) if such differences were found, to identify factors associated with that difference and the role, if any, of ethics consultants in mitigating them.
Methods: The study was a mixed methods retrospective study of consultation summaries and hospital and ethics center data on 56 age-and gender-matched Caucasian and African American Medicare patients who received ethics consultations related to issues around limiting medical treatment in the period 2011 to 2014. The average age of patients was 70.9.
Results: Consultation requests for females were made significantly earlier in their stays in the hospital (6.57 days) than were consultation requests made for males (16.07 days). For African American patients, the differences in admission-to-request intervals for female patients (5.93 days) and male patients (18.64 days) were greater than for Caucasian male and female patients. Differences in the timing of a consultation were not significantly correlated with the presence of an advance directive, the specialty of the attending physician, or the reasons for the consult request. Ethics consultants may have mitigated problems that developed during the lag in request times for African American males by spending more time, on average, on those consultations (316 minutes), especially more time, on average, than on consultations with Caucasian females (195 minutes). Most consultations (40 of 56) did result in movement toward limiting treatment, but no statistically significant differences were found among the groups studied in the movement toward limiting treatment. The average number of days from consult to discharge or death were strongly correlated with the intervals between admission to the hospital and request for an ethics consultation.
Conclusion: Our findings suggest race and gender disparities in the timing of ethics consultations that consultants may have partially mitigated.
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Measuring Quality in Ethics Consultation
Sally E. Bliss, Jane E. Oppenlander, Jacob M. Dahlke, Gordon J. Meyer, Eva M. Williford, and Robert C. Macauley
For all of the emphasis on quality improvement—as well as the acknowledged overlap between assessment of the quality of healthcare services and clinical ethics—the quality of clinical ethics consultation has received scant attention, especially in terms of empirical measurement. Recognizing this need, the second edition of Core Competencies for Health Care Ethics Consultation1 identified four domains of ethics quality: (1) ethicality, (2) stakeholders’ satisfaction, (3) resolution of the presenting conflict/dilemma, and (4) education that translates into knowledge. This study is the first, to our knowledge, to directly measure all of these domains. Here we describe the quality improvement process undertaken at a tertiary care academic medical center, as well as the tools developed to measure the quality of ethics consultation, which include post-consultation satisfaction surveys and weekly case conferences. The information gained through these tools helps to improve not only the process of ethics consultation, but also the measurement and assurance of quality.
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Defining Patient Advocacy for the Context of Clinical Ethics Consultation:
A Review of the Literature and Recommendations for Consultants
Tracy Brazg, Taryn Lindhorst, Denise Dudzinski, and Benjamin Wilfond
The idea of patient advocacy as a function of clinical ethics consultation (CEC) has been debated in the bioethics literature. In particular, opinion is divided as to whether patient advocacy inherently is in conflict with the other duties of the ethics consultant, especially that of impartial mediator. The debate is complicated, however, because patient advocacy is not uniformly conceptualized. This article examines two literatures that are crucial to understanding patient advocacy in the context of bioethical deliberations: the CEC literature and the literature on advocacy in the social work profession. A review of this literature identifies four distinct approaches to patient advocacy that are relevant to CEC: (1) the best interest approach, (2) the patient rights approach, (3) the representational approach, and (4) the empowerment approach. After providing a clearer understanding of the varied meanings of patient advocacy in the context of CEC, we assert that patient advocacy is not inherently inconsistent with the function of the ethics consultant and the CEC process. Finally, we provide a framework to help consultants determine if they should adopt an advocacy role.
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The Journal of Clinical Ethics, Spring 2016, Volume 27, Number 1
At the Bedside
How
Clinicians Can Reduce “Bullied Acquiescence”
Edmund G. Howe
Clinicians and patients and their families may disagree about a course of treatment, and the ensuing conflict may seem intractable. The parties may request mediation, or use mediation-based approaches, to help resolve the conflict. In the process of mediation, and at other times, parties in conflict may feel so pressured to accept a resolution that they acquiesce unwillingly—and such resolutions often unravel. In this article I investigate how “bullied acquiescence” might happen, and how to avoid it.
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Features
The Effectiveness of Standardized Patient Simulation in Training Hospital Ethics Committees
David Y. Harari and Robert C. Macauley
Clinical simulation using standardized patients has become standard in medical education—and is now being incorporated into some graduate programs in bioethics—for both formative and summative evaluation. In most hospitals, though, clinical ethics consultation is done by the ethics committee (or a subset of it). This study is the first, to our knowledge, to examine the effectiveness of standardized patient simulation in training hospital ethics committees to deal with ethically complex and emotionally fraught clinical situations. Following a substantial revision of the institution’s nonbeneficial treatment policy, ethics committee members underwent a simulation to determine whether a specific requested treatment should be withheld on the basis of futility. Pre- and post-intervention surveys showed improvement in all domains, although the small sample size limited the power of the study, with only one measure showing a statistically significant difference. An interesting incidental finding was that one-quarter of committee members voted against a determination of futility, even though the case clearly met the definition set forth in the policy. This highlights the emotional challenges in implementing an ethically rigorous, unanimously accepted policy that ultimately determines the timing and manner of a patient’s death.
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Clinical Recommendations in Medical Practice: A Proposed Framework to Reduce Bias and Improve the Quality of Medical Decisions
David Alfandre
Patients rely on, benefit from, and are strongly influenced by physicians’ recommendations. In spite of the centrality and importance of physicians’ recommendations to clinical care, there is only a scant literature describing the conceptual process of forming a clinical recommendation, and no discrete professional standards for making individual clinical recommendations. Evidence-based medicine and shared decision making together are intended to improve medical decision making, but there has been limited attention to how a recommendation is discretely formulated from either of those processes or how patients’ preferences ought to be considered and how much weight they should hold. Moreover, physicians’ bias has been reported to strongly influence how a recommendation is derived, thereby undermining the quality of healthcare decisions and patients’ trust. To demonstrate a potential for improving the quality of decisions, this article proposes a conceptual framework for how physicians should reach a clinical recommendation and apply the process in practice. For preference-sensitive clinical decisions—that is, clinical decisions when patients’ values and preferences are relevant—the process for reaching a recommendation should be transparent to patients and should be based solely on the medical evidence and patients’ values and preferences. When patients’ preferences for care do not prioritize health, physicians decide whether their recommendation will prioritize a welfare-enhancing versus an autonomy-enhancing approach. When there are gaps in understanding how physicians derive their clinical recommendations and how to further improve the quality of the decisions, the author calls for further empiric research.
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The Role of Communication and Interpersonal Skills in Clinical Ethics Consultation: The Need for a Competency in Advanced Ethics Facilitation
Wayne Shelton, Cynthia Geppert, and Jane Jankowski
Clinical ethics consultants (CECs) often face some of the most difficult communication and interpersonal challenges that occur in hospitals, involving stressed stakeholders who express, with strong emotions, their preferences and concerns in situations of personal crisis and loss. In this article we will give examples of how much of the important work that ethics consultants perform in addressing clinical ethics conflicts is incompletely conceived and explained in the American Society of Bioethics and Humanities Core Competencies for Healthcare Ethics Consultation and the clinical ethics literature.
The work to which we refer is best conceptualized as a specialized type of interviewing, in which the emotional barriers of patients and their families or surrogates can be identified and addressed in light of relevant ethical obligations and values within the context of ethics facilitation.
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A Case of Attempted Suicide in Huntington’s Disease: Ethical and Moral Considerations
Kristin Furfari, Nichole Zehnder, and Jean Abbott
A 62-year-old female with Huntington’s disease presented after a suicide attempt. Her advance directive stated that she did not want intubation or resuscitation, which her family acknowledged and supported. Despite these directives, she was resuscitated in the emergency department and continued to state that she would attempt suicide again. Her suicidality in the face of a chronic and advancing illness, and her prolonged consistency in her desire to take her own life, left careproviders wondering how to provide ethical, respectful care to this patient.
Tension between the ethical principles of autonomy and beneficence is central in this case. The patient’s narrative demonstrated that her suicide was an autonomous decision, free from coercion or disordered thinking from mental illness. Beneficence then would seem to necessitate care aligned with the patient’s desire to end her life, which created ethical uneasiness for her family and careproviders.
The case highlights several end-of-life ethical considerations that have received much recent attention. With ongoing discussions about the legalization of aid in dying across the country, caregivers are challenged to understand what beneficence means in people with terminal illnesses who want a say in their death. This case also highlights the profound moral distress of families and careproviders that arises in such ethically challenging scenarios.
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Mediation
Story of a Mediation in the Clinical Setting
Haavi Morreim
Conflicts in the clinical setting can spiral downward with remarkable speed, as parties become ever more incensed and entrenched in their positions. Productive conversations seem unlikely at best. Nevertheless, such situations can sometimes be turned into collaborative problem solving with equally remarkable speed. For this to happen, those providing conflict-resolution services such as mediation need to bring, not just a set of skills, but also some key norms: the process must be voluntary for all; the mediator must abjure giving advice or taking sides, and must honor the privacy of privately offered thoughts.
This article describes a conflict that had reached the point of a hospital’s requesting judicial coercion. However, a conflict-resolution process was then initiated that, in the end, led to amicable resolution and mended relationships, obviating the need for court orders. This article describes that conflict and the resolution process in detail, along the way annotating specific strategies that are often highly effective.
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Cases from MedStar Washington Hospital Center
The Case of Ms D: A Family’s Request for Posthumous Procurement of Ovaries
Laura Guidry-Grimes
The MedStar Washington Hospital Center clinical ethics team became involved in a case when the family requested the posthumous removal of a patient’s ovaries for future reproductive use. This case presents a novel question for clinical ethicists, since the technology for posthumous female reproduction is still in development. In the bioethics literature, the standard position is to refuse to comply with such a request, unless there is explicit consent or evidence of explicit conversations that demonstrate the deceased would have wanted this option pursued. Ms D’s case, we suggest, offers an exception to this default position; complying with the family’s request could have been ethically permissible in this case, had it been medically feasible.
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Analysis: OB/GYN-Genetics
Melissa Fries
Ovarian salvage from a patient with brain death is not available and will not preserve viable ova for future reproduction. Previous interest in assisted reproductive technology is only the first step in this process, which requires careful assessment of maternal risks and potential for recurrent genetic disease.
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Analysis: Fertility Preservation
Veronica Gómez-Lobo
This commentary considers the viability of ovarian tissue cryopreservation (OTC) in the case of an adult who qualified for brain death. Although there has been some success with OTC in achieving pregnancy when the tissue is reimplanted in the original donor, attempting OTC in the case under discussion would have not been medically feasible.
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Analysis: A Legal Perspective
Jack Schwartz
This commentary summarizes the uncertain state of the law regarding consent for posthumous gamete retrieval. The emergence of a legal framework will be aided by the kind of ethical analysis prompted by this family’s request for removal and preservation of a deceased patient’s ovaries.
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Perspectives
Ethical Considerations of Whole-Eye Transplantation
Wesley N. Sivak, Edward H. Davidson, Chiaki Komatsu, Yang Li, Maxine R. Miller, Joel S. Schuman, Mario G. Solari, Gerard Magill, and Kia M. Washington
Whole eye transplantation (WET) remains experimental. Long presumed impossible, recent scientific advances regarding WET suggest that it may become a clinical reality. However, the ethical implications of WET as an experimental therapeutic strategy remain largely unexplored. This article evaluates the ethical considerations surrounding WET as an emerging experimental treatment for vision loss. A thorough review of published literature pertaining to WET was performed; ethical issues were identified during review of the articles.
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Let’s Not Forget about Clinical Ethics Committees!
Franco A. Carnevale
The aim of this article is to highlight the under-recognized merits of clinical ethics committees (CECs), to help ensure that the development of roles for clinical ethics consultants do not unwittingly compromise the valuable contributions that CECs can continue to provide.
I argue that CECs can offer distinctive contributions to the clinical ethics consultation process that can complement and enrich the input provided by a clinical ethics consultant. These distinctions and complementarities should be further examined and developed. This will help to optimize the synergistic contributions that CECs and clinical ethics consultants can make to promote the ethical treatment of patients and their families.
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Moving Clinical Deliberations on Administrative Discharge in Drug Addiction Treatment Beyond Moral Rhetoric to Empirical Ethics
Izaak L. Williams
Patients’ admission to modern substance use disorder treatment comes with the attendant risk of being discharged from treatment—a widespread practice. This article describes the three mainstream theories of addiction that operate as a reference point for clinicians in reasoning about a decision to discharge a patient from treatment. The extant literature is reviewed to highlight the pathways that patients follow after administrative discharge. Little scientific research has been done to investigate claims and hypotheses about the therapeutic function of AD, which points to the need for empirical ethics to inform clinical addictions practice.
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Law
Legal Briefing: Mandated Reporters and Compulsory Reporting Duties
Thaddeus Mason Pope
This issue’s “Legal Briefing” column, one product of a Greenwall Foundation grant, reviews recent developments concerning compulsory reporting duties. Most licensed clinicians in the United States are “mandated reporters.” When these clinicians discover certain threats to the safety of patients or the public, they are legally required to report that information to specified government officials. Over the past year, several states have legislatively expanded the scope of these reporting duties. In other states, new court cases illustrate the vigorous enforcement of already existing duties. I have organized all these legal developments into the following eight categories:
1. Overview of Mandatory Reporting Duties
2. Controversy over the Benefits of Mandatory Reporting
3. New and Expanded Duties to Report
4. Criminal Penalties for Failing to Report
5. Civil Liability for Failing to Report
6. Disciplinary Penalties for Failing to Report
7. Legal Immunity for Good-Faith Reporting
8. Protection against Employers’ Retaliation
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The Journal of Clinical Ethics, Winter 2015, Volume 26, number 4
At the Bedside
Mediation Approaches at the Beginning or End of Life
Edmund G. Howe
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Features
The “Commitment Model” for Clinical Ethics Consultations: Society’s Involvement in the Solution of Individual Cases Stakeholders’ Perspectives on Preclinical Testing for Alzheimer’s Disease
Jalayne J. Arias, Jeffrey Cummings, Alexander Rae Grant, and Paul J. Ford
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Patient Decision Aids: A Case for Certification at the National Level in the United States
Urbashi Poddar, Shannon Brownlee, Dawn Stacey, Robert J. Volk, John W. Williams, and Glyn Elwyn
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Special Section: Mediation Techniques for Managing Clinical Conflict
Teaching and Learning the Techniques of Conflict Resolution for Challenging Ethics Consultations
Edward J. Bergman and Autumn Fiester
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Identifying Sources of Clinical Conflict: A Tool for Practice and Training in Bioethics Mediation
Edward J. Bergman
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Contentious Conversations: Using Mediation Techniques in Difficult Clinical Ethics Consultations
Autumn Fiester
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A Second Opinion: A Case Narrative on Clinical Ethics Mediation
Michael S. Weinstein
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Patient-Centered Care and the Mediator’s Skills
Mary K. Walton
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In the Ethos of the Safety Net: An Expanded Role for Clinical Ethics Mediation
Jolion McGreevy
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Mediation Training for the Physician: Expanding the Communication Toolkit to Manage Conflict
Joshua B. Kayser
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Preventing and De-Escalating Ethical Conflict: A Communication-Training Mediation Model
Tomer T. Levin and Patricia A. Parker
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Intensive Care, Intense Conflict: A Balanced Approach
Erin Talati Paquette and Irini N. Kolaitis
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Cases from the Cleveland Clinic
“She Just Doesn’t Know Him Like We Do”: Illuminating Complexities in Surrogate Decision Making
Margot M. Eves and Bryn S. Esplin
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Perspective
Medical Decision Making for Patients Without Proxies: The Effect of Personal Experience in the Deliberative Process
Allyson L. Robichaud
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Law
Legal Briefing: Medicare Coverage of Advance Care Planning
Thaddeus Mason Pope
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The Journal of Clinical Ethics, Fall 2015, Volume 26, number 3 Click on the article for an abstract.
At the Bedside
How to Help Parents, Couples, and Clinicians When an Extremely Premature Infant Is Born
Edmund G. Howe
Features
COAST (Coordinating Options for Acute Stroke Therapy: An Advance Directive for Stroke
Ilana Spokoyny, Lynette Cederquist, Brian Clay, and Brett C. Meyer
Assessing Advance Care Planning: Examining Autonomous Selections in an Advance Directive
Craig M. Klugman and Nicole M. Tolwin
Informed Consent, Deaf Culture, and Cochlear Implants
Lauren Pass and Abraham D. Graber
Clinical Ethics Consultation
Case Complexity and Quality Attestation for Clinical Ethics Consultants
Bethany Spielman, Jana Craig, Christine Gorka, and Keith Miller
Pediatrics
Prenatal Consultation for Extremely Preterm Neonates: Ethical Pitfalls and Proposed Solutions
Jennifer C. Kett
Ethical Bargaining and Parental Exclusion: A Clinical Case Analysis
Laura Guidry-Grimes and Elizabeth Victor
Case Analysis
The Least Bad Option: Unilateral Extubation after Declaration of Death by Neurological Criteria
Sally E. Bliss and Robert C. Macauley
Commentary
Samuel H. LiPuma and Joseph P. DeMarco
Letter
Response to Stephens and Heitman
Jason Adam Wasserman
The Journal of Clinical Ethics, Summer 2015, Volume 26, number 2
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At the Bedside
How to Retain the Trust of Patients and Families When We Will Not Provide the Treatment They Want
Edmund G. Howe
Features
Daniel Brudney and Mark Siegler
On Not Taking “Yes” for an Answer
Alexander M. Capron
Jason Adam Wasserman, Shannon Lindsey Stevenson, Cassandra Claxton, and Ernest F. Krug, III
Reasoning Backwards by Design: Commentary on “Moral Reasoning among HEC Members”
Ashley L. Stephens and Elizabeth Heitman
Samuel H. LiPuma and Joseph P. DeMarco
Continuous Sedation Until Death Should Not Be an Option of First Resort
Susan D. McCammon and Nicole M. Piemonte
“Let Me Keep My Dead Husband’s Sperm”: Ethical Issues in Posthumous Reproduction
Nikoletta Panagiotopoulou and Stamatios Karavolos
Cases from the Harvard Ethics Consortium
Christine Mitchell
When Bleeding Is Vital: Surgically Ensuring the “Virginal” State
Sohaila Bastami
Farrah Jarral
Mary-Jo DelVecchio Good
Hymen Restoration: “My” Discomfort, “Their” Culture, and Women’s Missing Voice
Sylvie Schuster
The Value of Virginity and the Value of the Law: Accommodating
Multiculturalism
Pablo de Lora
Is Hymenoplasty Anti-Feminist?
Gretchen Heinrichs
Doctoring the Genitals: Towards Broadening the Meaning of Social Medicine
Richard A. Shweder
Law
Thaddeus Mason Pope
Letters
Possible Unintended Consequences of Including Equal-Priority Surrogates
Steven Perry and Arvind Venkat
Autumn Fiester
The Journal of Clinical Ethics, Spring 2015, Volume 26, number 1
Professionalism: One Size Does Not Fit All
Edmund G. Howe
When a child is born with or acquires special needs, the parents may find some parental tasks more difficult. They may not know how to make their tasks easier, or that some parents find it exceptionally rewarding and meaningful to raise their children with special needs. This piece explores how clinicians might share this potentially life-altering information. It also explores when and why clinicians might want to make one-of-a-kind exceptions to their usual professional practices. (Click here to access this article.)
A Quality of Life Quandary: A Framework for Navigating Parental Refusal of Treatment for Co-Morbidities in Infants with Underlying Medical Conditions
Sarah N. Kunz, Ryan M. McAdams, Douglas S. Diekema, and Douglas J. Opel
Parental refusal of a recommended treatment is not an uncommon scenario in the neonatal intensive care unit. These refusals may be based upon the parents’ perceptions of their child’s projected quality of life. The inherent subjectivity of quality of life assessments, however, can exacerbate disagreement between parents and healthcare providers. We present a case of parental refusal of surgical intervention for necrotizing enterocolitis in an infant with Bartter syndrome and develop an ethical framework in which to consider the appropriateness of parental refusal based upon an infant’s projected quality of life. (Nonsubscribers may click here to purchase the full text.)
Witnesses to Mute Suffering: Quality of Life, Intellectual Disability, and the Harm Standard
Lisa C. Freitag
Decisions to override a parental request to withhold or withdraw treatment in the neonatal intensive care unit are often made based on the harm standard, with death being cast as the ultimate harm. However, often the treatment itself is not without harm, and the suffering engendered is undergone by an infant who is neither able to understand it nor express its presence. We can draw upon anticipated future quality of life to justify the present suffering, but are in a quandary when that future is not guaranteed or is likely to hold little but further suffering. I propose that conflicts over continuing treatment are based both on disagreements about the desirability of possible futures, and on differing perceptions of the infant’s current level of suffering. Those of us who witness the suffering of these tiny, mute infants all bear some responsibility to insure that their suffering is not without purpose. (Nonsubscribers may click here to purchase the full text.)
Home Birth of Infants with Congenital Anomalies: A Case Study and Ethical Analysis of Careproviders’ Obligations
Jane Jankowski and Paul Burcher
This article presents the case of a mother who is planning a home birth with a midwife with the shared knowledge that the fetus would have congenital anomalies of unknown severity. We discuss the right of women to choose home birth, the caregivers’ duty to the infant, and the careproviders’ dilemma about how to respond to this request. The ethical duties of concerned careproviders are explored and reframed as professional obligations to the mother, infant, and their profession at large. Recommendations are offered based on this case in order to clarify the considerations surrounding not only home birth of a fetus with anticipated anomalies, but also to address the ethical obligations of caregivers who must navigate the unique tension between respecting the mother’s wishes and the duty of the careproviders to deliver optimal care. (Nonsubscribers may click here to purchase the full text.)
Of Missing Voices and the Obstetric Imaginary: Commentary on Jankowski and Burcher
Melissa Cheyney
In this commentary, I respond to an ethical analysis of a case study, reported by Jankowski and Burcher, in which a woman gives birth to an infant with a known heart anomaly of unknown severity, at home, attended by a midwife. Jankowski and Burcher argue that the midwife who attended this family acted unethically because she knowingly operated outside of her scope of practice. While I agree that the authors’ conclusions are well supported by the portion of the story they were able to gather, the fact that the midwife and mother declined to engage in the ethics consult that informs their piece means that critical segments of the narrative are left untold. Some important additional considerations emerge from these silences.
I explore the implicit assumptions of the biotechnical embrace, the roles of the political economy of hope and the obstetric imaginary in driving prenatal testing, and institutional blame for the divisiveness of the home-hospital divide in the United States. The value of Jankowski and Burcher’s case study lies in its ability to highlight the intersections and potential conflicts between the principles of beneficence, patients’ autonomy, and professional ethics, and to begin to chart a course for us through them. (Nonsubscribers may click here to purchase the full text.)
Hinduism and Death with Dignity: Historic and Contemporary Case Examples
Rajan Dewar, Nancy Cahners, Christine Mitchell, and Lachlan Forrow
An estimated 1.2 to 2.3 million Hindus live in the United States. End-of-life care choices for a subset of these patients may be driven by religious beliefs. In this article, we present Hindu beliefs that could strongly influence a devout person’s decisions about medical care, including end-of-life care. We provide four case examples (one sacred epic, one historical example, and two cases from current practice) that illustrate Hindu notions surrounding pain and suffering at the end of life. Chief among those is the principle of karma, through which one reaps the benefits and penalties for past deeds. Deference to one’s spouse or family is another important Hindu value, especially among Hindu women, which can impact the decision-making process and challenge the Western emphasis on autonomy. In addition, the Hindu embrace of astrology can lead to a desire to control the exact time of death. Confounding any generalizations, a Hindu patient may reject or accept treatments based on the individual patient’s or family’s interpretation of any given tradition. Through an awareness of some of the fundamental practices in Hinduism and the role of individual interpretation within the tradition, clinicians will be better able to support their Hindu patients and families at the end of life. (Nonsubscribers may click here to purchase the full text.)
Medical Professionalism in China and the United States:
A Transcultural Interpretation
Jing-Bao Nie, Kirk L. Smith, Yali Cong, Linying Hu, and Joseph D. Tucker
As in other societies, medical professionalism in the Peoples’ Republic of China has been rapidly evolving. One of the major events in this process was the endorsement in 2005 of the document, “Medical Professionalism in the New Millennium: A Physician Charter,” by the Chinese Medical Doctor Association (hereafter, the Charter).1 More recently, a national survey, the first on such a large scale, was conducted on Chinese physicians’ attitudes toward the fundamental principles and core commitments put forward in the Charter. Based on empirical findings from that study and comparing them to the published results of a similar American survey, the authors offer an in-depth interpretation of significant cross-cultural differences and important transcultural commonalities. The broader historical, socio-economic, and ethical issues relating to salient Chinese cultural practices such as family consent, familism (the custom of deferring decisions to family members), and the withholding of medical information, as well as controversial topics such as not respecting patients’ autonomy, are examined. The Chinese Survey found that Chinese physicians supported the principles of the Charter in general. Here we argue that Chinese culture and traditional medical ethics are broadly compatible with the moral commitments demanded by modern medical professionalism. Methodologically and theoretically—recognizing the problems inherent in the hoary but still popular habit of dichotomizing cultures and in relativism—a transcultural approach is adopted that gives greater (due) weight to the internal moral diversity present within every culture, the common ground shared by different cultures, and the primacy of morality. Genuine cross-cultural dialogue, including a constructive Chinese-American dialogue in the area of medical professionalism, is not only possible, but necessary. (Nonsubscribers may click here to purchase the full text.)
Re-Evaluating Ethical Concerns in Planned Emergency Research Involving Critically Ill Patients: An Interpretation of the Guidance Document from the United States Food and Drug Administration
Nathan J. Smischney, James A. Onigkeit, Richard F. Hinds, and
Wayne T. Nicholson
Background: U.S. federal regulations require that certain ethical elements be followed to protect human research subjects. The location and clinical circumstances of a proposed research study can differ substantially and can have significant implications for these ethical considerations. Both the location and clinical circumstances are particularly relevant for research in intensive care units (ICUs), where patients are often unable to provide informed consent to participate in a proposed research intervention.
Purpose: Our goal is to elaborate on the updated 2013 U.S. Food and Drug Administration (FDA) guidance document regarding an exemption from the requirement of obtaining informed consent from patients or their surrogates and to address certain elements within that document, thereby assisting clinicians in developing a framework for emergency research in accordance with the regulatory bodies at their own institutions and in the United States.
Methods: Review of the 2011 and updated FDA guidance document on exemption from informed consent.
Results: The current process of obtaining informed consent within ICUs needs to be revisited, especially for research in which timely informed consent is not likely. In particular, the process of obtaining informed consent may not be appropriate or even ethical for critically ill patients in extremis who require an intervention for which there is no current acceptable standard of care and clinical equipoise exists. We provide clinicians with a viewpoint that further elaborates on the FDA guidance document.
Limitations: The viewpoints provided herein are those of the authors and are therefore inherently limited by the personal views of a selected few. Other clinicians or researchers may not interpret the FDA guidelines in a similar manner. Moreover, the discussion of a guideline document is a limitation in and of itself. The guidelines set forth by the FDA are precisely that—guidelines. Therefore, they may not be followed as outlined in the guidance document within one’s own institution. Our goal is that, by elaborating on the guidelines for planned research involving human subjects in the ICU, institutional regulatory bodies may gain a better understanding in drafting their own document when faced with a clinician or a researcher who wishes to conduct planned research in an ICU.
Conclusions: We believe that the interpretations provided will allow clinicians to safely undertake planned research in ICUs without endangering the main tenets of ethical research involving human participants. This research is needed for the advancement of care in the critically ill. (Nonsubscribers may click here to purchase the full text.)
The Ethics of Physicians’ Web Searches for Patients’ Information
Nicholas Genes and Jacob Appel
When physicians search the web for personal information about their patients, others have argued that this undermines patients’ trust, and the physician-patient relationship in general. We add that this practice also places other relationships at risk, and could jeopardize a physician’s career.
Yet there are also reports of web searches that have unambiguously helped in the care of patients, suggesting circumstances in which a routine search of the web could be beneficial. We advance the notion that, just as nonverbal cues and unsolicited information can be useful in clinical decision making, so too can online information from patients. As electronic records grow more voluminous and span more types of data, searching these resources will become a clinical skill, to be used judiciously and with care—just as evaluating the literature is, today.
But to proscribe web searches of patients’ information altogether is as nonsensical as disregarding findings from physical exams—instead, what’s needed are guidelines for when to look and how to evaluate what’s uncovered, online. (Nonsubscribers may click here to purchase the full text.)
Legal Briefing: Coerced Treatment and Involuntary Confinement for Contagious Disease
Thaddeus Mason Pope and Heather Michelle Bughman
This issue’s “Legal Briefing” column covers recent legal developments involving coerced treatment and involuntary confinement for contagious disease. Recent high profile court cases involving measles, tuberculosis, human immunodeficiency virus, and especially Ebola, have thrust this topic back into the bioethics and public spotlights. This has reignited debates over how best to balance individual liberty and public health. For example, the Presidential Commission for the Study of Bioethical Issues has officially requested public comments, held open hearings, and published a 90-page report on “ethical considerations and implications” raised by “U.S. public policies that restrict association or movement (such as quarantine).”1 Broadly related articles have been published in previous issues of JCE.2 We categorize recent legal developments on coerced treatment and involuntary confinement into the following six categories:
1. Most Public Health Confinement Is Voluntary
2. Legal Requirements for Involuntary Confinement
3. New State Laws Authorizing Involuntary Confinement
4. Quarantine Must Be as Least Restrictive as Necessary
5. Isolation Is Justified Only as a Last Resort
6. Coerced Treatment after Persistent Noncompliance.
(Nonsubscribers may click here to purchase the full text.)
The Journal of Clinical Ethics,
Winter 2014, Volume 25, number 4
New Approaches with Surrogate Decision Makers
Edmund G. Howe
Who’s at the Table? Moral Obligations to Equal-Priority Surrogates in Clinical Ethics Consultations
Meghan O’Brien and Autumn Fiester
Developing and Testing a Checklist to Enhance Quality in Clinical Ethics Consultation
Lauren Sydney Flicker, Susannah L. Rose, Margot M. Eves, Anne Lederman Flamm, Ruchi Sanghani,
and Martin L. Smith
Surrogate Decision Making and Intellectual Virtue
Gregory L. Bock
Identifying Challenges to Communicating with Patients about Their Imminent Death
Lena Hoff and Göran Hermerén
Medical Missions to Ghana: The Ethics of Choosing Children for Cardiac Surgery
Christine Mitchell
Beverly M. Small, Judith Hurley, and Christine Placidi
Great Need, Scarce Resources, and Choice: Reflections on Ethical Issues Following a Medical Mission
Ravi R. Thiagarajan, Mark A. Scheurer, and Joshua W. Salvin
Ethical Aspects of Arranging Local Medical Collaboration and Care
Samuel Blay Nguah
Pediatric Heart Surgery in Ghana: Three Ethical Questions
Nir Eyal
Epilogue: Ethical Goals for the Future
Edmund G. Howe
The Journal of Clinical Ethics,
Fall 2014, Volume 25, number 3
What Should Careproviders Do When a Patient "Won’t Budge"?
Edmund G. Howe
Empirical Bioethics Research Is a Winner, But Bioethics Mission Creep Is a False Alarm
Anne Lederman Flamm and Eric Kodish
John H. Evans
When Should We Not Respect a Patient’s Wish?
Stephen Napier
The Ethical and Clinical Importance of Measuring Consciousness in Continuously Sedated Patients
Kasper Raus, Martine de Laat, Eric Mortier, and Sigrid Sterckx
The Proportionate Value of Proportionality in Palliative Sedation
Jeffrey T. Berger
Anne Lederman Flamm, Martin L. Smith, and Patricia A. Mayer
A Survey of Healthcare Industry Representatives’ Participation in Surgery: Some New Ethical Concerns
Jeffrey Bedard, Crystal Dea Moore, and Wayne Shelton
Legal Briefing: Brain Death and Total Brain Failure
Thaddeus Mason Pope
The Journal of Clinical Ethics,
Summer 2014, Volume 25, number 2
How to Help Patients and Families Make Better End-of-Life Decisions
Edmund G. Howe
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Stumbled, Fumbled, Bumbled, Grumbled, and Humbled: Looking Back at the Future History of Clinical Ethics
Jeffrey T. Berger
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A Protocol and Ethical Framework for the Distribution of Rationed Chemotherapy
Andrew Hantel
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Detoxifying the Concept of Rationing
James Sabin
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Uncharted Terrain: Preference Construction at the End of Life
Mary T. White
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Aetna’s Compassionate Care Program and End-of-Life Decisions
Barak Krakauer, Joseph Agostini, and Randall Krakauer
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Chinese Physicians’ Attitudes toward and Understanding of Medical Professionalism: Results of a National Survey
Linying Hu, Xiuyun Yin, Xiaolei Bao, and Jing-Bao Nie
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Ethics Pocket Cards: An Educational Tool for Busy Clinicians
Rebecca L. Volpe, Benjamin H. Levi, George F. Blackall, and Michael J. Green
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Legal Briefing: Informed Consent in the Clinical Context
Thaddeus Mason Pope and Melinda Hexum
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Letter: Improving Patient-Doctor Communication about Risk and Choice in Obstetrics and Gynecology through Medical Education: A Call for Action
Macey L. Henderson, Jennifer Chevinsky, Rizwana Biviji-Sharma, and Kathryn Mills
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The Journal of Clinical Ethics, Spring 2014, volume 25, number 1
Ethically Optimal Interventions with Impaired Patients
Edmund G. Howe
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DNR and ECMO: A Paradox Worth Exploring
Ellen Cowen Meltzer, Natalia S. Ivascu, and Joseph J. Fins
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Defending the Jurisdiction of the Clinical Ethicist
John H. Evans
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Can the Social Sciences Save Bioethics?
Daniel Callahan
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Clinical Ethicists: Consultants or Professionals?
William J. Winslade
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Response to Callahan and Winslade
John H. Evans
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The Desire to Die: Making Treatment Decisions for Suicidal Patients Who Have an Advance Directive
Erica K. Salter
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Beyond Privacy: Benefits and Burdens of E-Health Technologies in Primary Care
Julie M. Aultman and Erin Dean
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The Side-Effects of the "Facebook Effect": Challenging Facebook’s "Organ Donor" Application
Adam M. Peña
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Legal Briefing: Voluntarily Stopping Eating and Drinking
Thaddeus Mason Pope and Amanda West
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The Journal of Clinical Ethics, Winter 2013, volume 24, number 4
Families, Strangers, and Those Most Alone: Insights from Cultures, Including Our Own
Edmund G. Howe
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On the Lingua Franca of Clinical Ethics
Joseph J. Fins
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Surrogates and Extra-Familial Interests
Ralph Baergen and William Woodhouse
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Familiar Interests and Strange Analogies: Baergen and Woodhouse on Extra-Familial Interests
James Lindemann Nelson
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Challenges to Culturally Sensitive Care for Elderly Chinese Patients: A First-Generation Chinese-American Perspective
Karen C. Chan
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Patients’ Experiences with Disclosure of a Large-Scale Adverse Event
Carolyn D. Prouty, Mary Beth Foglia, and Thomas H. Gallagher
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Organ Donation among Undocumented Hispanic Immigrants: An Assessment of Knowledge and Attitudes
Joshua S. Baru, Brian P. Lucas, Carmen Martinez, and Daniel Brauner
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Ethically Informed Pragmatic Conditions for Organ Donation after Cardiocirculatory Death: Could They Assist in Policy Development?
Jeffrey Kirby
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Why We Should Continue to Worry about the Therapeutic Misconception
Larry R. Churchill, Nancy M.P. King, and Gail E. Henderson
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Problems with the Consensus Definition of the Therapeutic Misconception
David S. Wendler
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Modern Clinical Research: Guidelines for the Practicing Clinician or Source of Confusion?
Ilia Volkov
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The Journal of Clinical Ethics, Fall 2013, volume 24, number 3
Special Issue on Place of Birth
Guest Edited by Elizabeth Bogdan-Lovis, Charlotte de Vries, and Raymond G. de Vries
When a Mother Wants to Deliver with a Midwife at Home
Edmund G. Howe
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Planned Home Birth in the United States and Professionalism: A Critical Assessment
Frank A. Chervenak, Laurence B. McCullough, Amos Grünebaum, Birgit Arabin,
Malcolm I. Levene, and Robert L. Brent
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Ethics and the Architecture of Choice for Home and Hospital Birth
Elizabeth Bogdan-Lovis and Raymond G. de Vries
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Revisiting “The Maximin Strategy in Modern Obstetrics”
Howard Brody and Carol Sakala
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A Reconsideration of Home Birth in the United States
Howard Minkoff and Jeffrey Ecker
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The Absolute Power of Relative Risk in Debates on Repeat Cesareans and Home Birth
in the United States
Eugene Declercq
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Moral Science: Ethical Argument and the Production of Knowledge about Place of Birth
Raymond G. de Vries, Yasaswi Paruchuri, Kathleen Lorenz, and Saraswathi Vedam
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Women’s Perceptions of Childbirth Risk and Place of Birth
Mary Regan and Katie McElroy
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Exceptional Deliveries: Home Births as Ethical Anomalies in American Obstetrics
Claire L. Wendland
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Being Safe: Making the Decision to Have a Planned Home Birth in the United States
Judith A. Lothian
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Facilitating Women’s Choice in Maternity Care
Marianne Nieuwenhuijze and Lisa Kane Low
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Personal Perspective: One Obstetrician’s Look at a Polarizing Birth Arena
Annette E. Fineberg
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Personal Perspective: Seeking an Alternative Baseline for Birth
Darcia Narváez
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Personal Perspective: Individual versus Professional Preferences
Julie Sharon-Wagschal
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Personal Perspective: The Industry Take-Over of Home Birth and Death
Merilynne Rush
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Personal Perspective: On the Need for a Real Choice
Steve Calvin
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Legal Briefing: Home Birth and Midwifery
Thaddeus Mason Pope and Deborah Fisch
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The Journal of Clinical Ethics, Summer 2013, volume 24, number 2
Why Careproviders May Conclude that Treating a Patient Is Futile
Edmund G. Howe
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Repetitive Foreign Body Ingestion: Ethical Considerations
Sarah Lytle, Susan J. Stagno, and Barb Daly
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The Intensity and Frequency of Moral Distress Among Different Healthcare Disciplines
Susan Houston, Mark A. Casanova, Marygrace Leveille, Kathryn L. Schmidt,
Sunni A. Barnes, Kelli R. Trungale, and Robert L. Fine
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“He Got His Last Wishes”: Ways of Knowing a Loved One’s End-of-Life Preferences and Whether Those Preferences Were Honored
Angelina R. Wittich, Beverly Rosa Williams, F. Amos Bailey, Lesa L. Woodby, and
Kathryn L. Burgio
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Making Decisions for Hospitalized Older Adults: Ethical Factors Considered by Family Surrogates
Jenna Fritsch, Sandra Petronio, Paul R. Helft, and Alexia M. Torke
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The Threshold Moment: Ethical Tensions Surrounding Decision Making on Tracheostomy for Patients in the Intensive Care Unit
Arvind Venkat
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A Response to Dubler’s Commentary on “Surmounting Elusive Barriers: The Case for Bioethics Mediation”
Edward J. Bergman
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The Art of the Chart Note in Clinical Ethics Consultation and Bioethics Mediation: Conveying Information that Can Be Understood and Evaluated
Nancy Neveloff Dubler
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Legal Briefing: The New Patient Self-Determination Act
Thaddeus Mason Pope
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The Journal of Clinical Ethics, Spring 2013, volume 24, number 1
“The Best Place for Bare-Knuckled Ethics”
Edmund G. Howe
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“Surmounting Elusive Barriers: The Case for Bioethics Mediation”
Edward J. Bergman
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“Commentary on Bergman: ‘Yes . . . But' ”
Nancy Neveloff Dubler
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“The Chiaroscuro of Accountability in the Second Edition of the Core Competencies for Healthcare Ethics Consultation”
Lisa Rasmussen
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“Prescribing for Coworkers: Practices and Attitudes of Faculty and Residents”
Carson Strong, Stephanie Connelly, and Laura R. Sprabery
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“The Ethics of Reality Medical Television”
Thalia Margalit Krakower, Martha Montello, Christine Mitchell, and Robert D. Truog
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“Not a ‘Reality’ Show”
Terence Wrong and Erica Baumgart
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“First, Do No Harm”
Neal Baer
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“Watching Boston Med”
Walter M. Robinson
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“Legal Briefing: Shared Decision Making and Patient Decision Aids”
Thaddeus Mason Pope and Melinda Hexum
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The Journal of Clinical Ethics, Winter 2012, volume 23, number 4
A Different Approach to
Patients and Loved Ones Who Request “Futile” Treatments
Edmund G. Howe
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Complex Discharges and Undocumented Patients: Growing Ethical Concerns
Kayhan Parsi and Nina Hossa
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When Negative Rights Become Positive Entitlements: Complicity, Conscience, and Caregiving
Andrew G. Shuman, Adam A. Khan, Jeffrey S. Moyer, Mark E. Prince,
and Joseph J. Fins
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A New Standard for Incapacitated Patient Decision Making: The Clinical Standard of Surrogate Empowerment
Marc Tunzi
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Bedside Resource Stewardship in Disasters: A Provider’s Dilemma Practicing in an Ethical Gap
Michelle Daniel
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Resource Stewardship in Disasters: Alone at the Bedside
Jeffrey T. Berger
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Tragic Choices in Humanitarian Health Work
Matthew R. Hunt, Christina Sinding, and Lisa Schwartz
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Endoscopy During a Missile Attack: A Military Dilemma for Physicians
Stephen Malnick, Orit Faraj, and Alan Jotkowitz
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Making “Social” Safer: Are Facebook and Other Online Networks Becoming Less Hazardous for Health Professionals?
Daniel R. George
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Legal Briefing: POLST: Physician Orders for Life-Sustaining Treatment
Thaddeus Mason Pope and Melinda Hexum
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The Journal of Clinical Ethics, Volume 23, Number 3, Fall 2012
An Ethical Priority Greater than Life Itself
Edmund G. Howe
Potential Subjects’ Responses to an Ethics Questionnaire in a Phase I Study of Deep Brain Stimulation in Early Parkinson’s Disease
Stuart G. Finder, Mark J. Bliton, Chandler E. Gill, Thomas L. Davis,
Peter E. Konrad, and P. David Charles
Regulatory Misconception Muddies the Ethical Waters: Challenges to a Qualitative Study
Kimberly M. Yee and Paul J. Ford
Fortitude and Community: Response to Yee and Ford
Stuart G. Finder and Mark J. Bliton
Stories and the Longitudinal Patient Relationship: What Can Clinical Ethics Consultants Learn from Palliative Care?
Wynne Morrison and Sabrina F. Derrington
The Rose of Sharon: What Is the Ideal Timing for Palliative Care Consultation versus Ethics Consultation?
Jennifer La Via and David Schiedermayer
HCEC Pearls and Pitfalls: Suggested Do’s and Don’t’s for Healthcare Ethics Consultants
Joseph A. Carrese and Members of the American Society for Bioethics and
Humanities Clinical Ethics Consultation Affairs Standing Committee
Elective Delivery Before 39 Weeks’ Gestation: Reconciling Maternal, Fetal, and Family Interests in Challenging Circumstances
S. Van McCrary, Shetal I. Shah, Adriann Combs, and J. Gerald Quirk
Quality of Life and Elective C-Sections: Defining Limits to Maternal and Family Interests
Jeffrey P. Spike
Which Patient Groups Should Be Asked to Participate in First-in-Human Trials of Stem-Cell-Based Therapies?
Kristina Hug and Göran Hermerén
Time to Stop Worrying about the Therapeutic Misconception
David S. Wendler
Letter: Providing More Reasons for Individuals to Register as Organ Donors
Macey Leigh Henderson
The Journal of Clinical Ethics, Volume 23, Number 2, Summer 2012
How Should Careproviders Respond to Patients’ Requests That May Be Refused?
Edmund G. Howe
Living Donation and Cosmetic Surgery: A Double Standard in Medical Ethics?
Giuliano Testa, Erica Carlisle, Mary Simmerling, and Peter Angelos
Different Standards Are Not Double Standards: All Elective Surgical Patients Are Not Alike
Lainie Friedman Ross, Walter Glannon, Lawrence J. Gottlieb, and
J. Richard Thistlethwaite, Jr.
The Effect of Completing a Surrogacy Information and Decision-Making Tool upon Admission to an Intensive Care Unit on Length of Stay and Charges
Carol W. Hatler, Charlene Grove, Stephanie Strickland, Starr Barron,
and Bruce D. White
Training in Clinical Ethics: Launching the Clinical Ethics Immersion Course at the Center for Ethics at the Washington Hospital Center
Nneka O. Mokwunye, Evan G. DeRenzo, Virginia A. Brown, and John J. Lynch
Training in Clinical Ethics Consultation: The Washington Hospital Center Course
Jeffrey P. Spike
Truly Intensive Clinical Ethics Immersion at the Washington Hospital Center
Christopher L. Church and Thalia Arawi
Credentialing the Clinical Ethics Consultant: An Academic Medical Center Affirms Professionalism and Practice
Cathleen A. Acres, Kenneth Prager, George E. Hardart, and Joseph J. Fins
Ethics Been Very Good to Us
Giles R. Scofield
Inside Baseball and Ethics Consultation: A Comment on “Ethics Been Very Good to Us”
Norman Quist
Credentialing and Certification in Ethics Consultation: Lessons from Palliative Care
David Schiedermayer and John La Puma
Always on Call: Thoughts from a Neophyte Physician
Jonathan R. Scarff and David W. Musick
Legal Briefing: The Unbefriended: Making Healthcare Decisions for Patients Without Surrogates (Part 2)
Thaddeus Mason Pope and Tanya Sellers
The Journal of Clinical Ethics, Volume 23, Number 1, Spring 2012
How Careproviders Can Acquire and Apply Greater Wisdom
Edmund G. Howe
Clinical Wisdom in Psychoanalysis and Psychodynamic Psychotherapy: A Philosophical and Qualitative Analysis
Cynthia Baum-Baicker and Dominic A. Sisti
Response: Clinical Wisdom and Evidence-Based Medicine Are Complementary
Julian De Freitas, Omar S. Haque, Abilash A. Gopal, and Harold J. Bursztajn
Clinical Wisdom and Evidence-Based Medicine Are (Indeed) Complementary: A Reply to Bursztajn and Colleagues
Cynthia Baum-Baicker and Dominic A. Sisti
Attending to Clinical Wisdom
Jodi Halpern
Her Own Decision: Impairment and Authenticity in Adolescence
Amy T. Campbell, Sabrina F. Derrington, D. Micah Hester, and Cheryl D. Lew
Supporting Her Autonomy: The Obligations of Guardians and Physicians in Adolescents’ Refusals of Care
Jennifer K. Walter
Intraoperative Conversion to Open Technique: Is Informed Consent Implied?
Chirag B. Patel and Davide Cattano
Anesthesiological Ethics: Can Informed Consent Be Implied?
Jeffrey P. Spike
Surrogate Medical Decision Making on Behalf of a Never-Competent, Profoundly Intellectually Disabled Patient Who Is Acutely Ill
Arvind Venkat
Care versus Treatment at the End of Life for Profoundly Disabled Persons
Jeffrey P. Spike
Legal Briefing: The Unbefriended: Making Healthcare Decisions for Patients without Surrogates (Part 1)
Thaddeus Mason Pope and Tanya Sellers