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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