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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