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Frontiers in Bioethics Am. J. Bioethics (IF 5.786) Pub Date : 2020-01-02 David Magnus
(2020). Frontiers in Bioethics. The American Journal of Bioethics: Vol. 20, No. 1, pp. 1-2.
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Randomized Trials are Deeply Offensive Am. J. Bioethics (IF 5.786) Pub Date : 2020-01-02 John D. Lantos
(2020). Randomized Trials are Deeply Offensive. The American Journal of Bioethics: Vol. 20, No. 1, pp. 3-5.
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Ethics and Collateral Findings in Pragmatic Clinical Trials Am. J. Bioethics (IF 5.786) Pub Date : 2020-01-02 Stephanie R. Morain; Kevin Weinfurt; Juli Bollinger; Gail Geller; Debra JH Mathews; Jeremy Sugarman
Pragmatic clinical trials (PCTs) offer important benefits, such as generating evidence that is suited to inform real-world health care decisions and increasing research efficiency. However, PCTs also present ethical challenges. One such challenge involves the management of information that emerges in a PCT that is unrelated to the primary research question(s), yet may have implications for the individual patients, clinicians, or health care systems from whom or within which research data were collected. We term these findings as ?pragmatic clinical trial collateral findings,? or ?PCT-CFs?. In this article, we explore the ethical considerations associated with the identification, assessment, and management of PCT-CFs, and how these considerations may vary based upon the attributes of a specific PCT. Our purpose is to map the terrain of PCT-CFs to serve as a foundation for future scholarship as well as policy-making and to facilitate careful deliberation about actual cases as they occur in practice.
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Pragmatic Clinical Trial-Collateral Findings: Recognizing the Needs of Low-Resource Research Participants Am. J. Bioethics (IF 5.786) Pub Date : 2020-01-02 Courtney A. Stewart; Kayla E. Cooper; Megan B. Raymond; Faith E. Fletcher; Vence L. Bonham
(2020). Pragmatic Clinical Trial-Collateral Findings: Recognizing the Needs of Low-Resource Research Participants. The American Journal of Bioethics: Vol. 20, No. 1, pp. 19-21.
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Collateral Findings from Pragmatic Clinical Trials: What Responsibility Do We Have to Enrolled and Future Patients? Am. J. Bioethics (IF 5.786) Pub Date : 2020-01-02 Danielle M. Whicher; Albert W. Wu
(2020). Collateral Findings from Pragmatic Clinical Trials: What Responsibility Do We Have to Enrolled and Future Patients? The American Journal of Bioethics: Vol. 20, No. 1, pp. 21-24.
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Partial Entrustment in Pragmatic Clinical Trials Am. J. Bioethics (IF 5.786) Pub Date : 2020-01-02 Henry S. Richardson; Mildred K. Cho
(2020). Partial Entrustment in Pragmatic Clinical Trials. The American Journal of Bioethics: Vol. 20, No. 1, pp. 24-26.
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The Collateral Finding of What? Am. J. Bioethics (IF 5.786) Pub Date : 2020-01-02 Bjørn Hofmann
(2020). The Collateral Finding of What? The American Journal of Bioethics: Vol. 20, No. 1, pp. 26-28.
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Human Subjects Research Without Consent: Duties to Return Individual Findings When Participation was Non-Consensual Am. J. Bioethics (IF 5.786) Pub Date : 2020-01-02 Nina Varsava
(2020). Human Subjects Research Without Consent: Duties to Return Individual Findings When Participation was Non-Consensual. The American Journal of Bioethics: Vol. 20, No. 1, pp. 28-30.
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Misrepresenting “Usual Care” in Research: An Ethical and Scientific Error Am. J. Bioethics (IF 5.786) Pub Date : 2020-01-02 Ruth Macklin; Charles Natanson
Comparative effectiveness studies, referred to here as “usual-care” trials, seek to compare current medical practices for the same medical condition. Such studies are presumed to be safe and involve only minimal risks. However, that presumption may be flawed if the trial design contains “unusual” care, resulting in potential risks to subjects and inaccurately informed consent. Three case studies described here did not rely on clinical evidence to ascertain contemporaneous practice. As a result, the investigators drew inaccurate conclusions, misinformed research participants, and subjects’ safety was compromised. Before approving usual-care protocols, IRBs and scientific review committees should evaluate the quality and completeness of information documenting usual-care practices. Guidance from governmental oversight agencies regarding evidence-based documentation of current clinical practice could prevent similar occurrences in future usual-care trials. Accurate information is necessary to ensure that trials comply with government regulations that require minimizing research risks to subjects and accurate informed consent documents.
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Improving Comparative Effectiveness Trials Am. J. Bioethics (IF 5.786) Pub Date : 2020-01-02 Ross E. McKinney
(2020). Improving Comparative Effectiveness Trials. The American Journal of Bioethics: Vol. 20, No. 1, pp. 40-42.
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What Research Ethics (Often) Gets Wrong about Minimal Risk Am. J. Bioethics (IF 5.786) Pub Date : 2020-01-02 Patrick Bodilly Kane; Scott Y. H. Kim; Jonathan Kimmelman
(2020). What Research Ethics (Often) Gets Wrong about Minimal Risk. The American Journal of Bioethics: Vol. 20, No. 1, pp. 42-44.
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“Unusual Care”: Groupthink and Willful Blindness in the SUPPORT Study Am. J. Bioethics (IF 5.786) Pub Date : 2020-01-02 George J. Annas; Catherine L. Annas
(2020). “Unusual Care”: Groupthink and Willful Blindness in the SUPPORT Study. The American Journal of Bioethics: Vol. 20, No. 1, pp. 44-46.
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It Does Not Matter Whether Research Interventions Are Usual Care Am. J. Bioethics (IF 5.786) Pub Date : 2020-01-02 Cory E. Goldstein; Charles Weijer
(2020). It Does Not Matter Whether Research Interventions Are Usual Care. The American Journal of Bioethics: Vol. 20, No. 1, pp. 47-48.
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The CER Experiment Am. J. Bioethics (IF 5.786) Pub Date : 2020-01-02 Lois Shepherd
(2020). The CER Experiment. The American Journal of Bioethics: Vol. 20, No. 1, pp. 49-51.
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From Epistemic Trespassing to Transdisciplinary Cooperation: The Role of Expertise in the Identification of Usual Care Am. J. Bioethics (IF 5.786) Pub Date : 2020-01-02 Joseph Michael Vukov; Kit Rempala; Molly Klug; Marley Hornewer
(2020). From Epistemic Trespassing to Transdisciplinary Cooperation: The Role of Expertise in the Identification of Usual Care. The American Journal of Bioethics: Vol. 20, No. 1, pp. 52-54.
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Traditional, Not the Usual: On Misrepresenting Acute Respiratory Distress Syndrome Network Lower Tidal Volume Trial (ARMA) Am. J. Bioethics (IF 5.786) Pub Date : 2020-01-02 Peter Shiu-Hwa Tsu
(2020). Traditional, Not the Usual: On Misrepresenting Acute Respiratory Distress Syndrome Network Lower Tidal Volume Trial (ARMA) The American Journal of Bioethics: Vol. 20, No. 1, pp. 54-56.
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The Importance of Describing as Well as Defining Usual Care Am. J. Bioethics (IF 5.786) Pub Date : 2020-01-02 Stuart G. Nicholls; Merrick Zwarenstein; Monica Taljaard
(2020). The Importance of Describing as Well as Defining Usual Care. The American Journal of Bioethics: Vol. 20, No. 1, pp. 56-58.
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Misuse of “Usual Care” in Emergency Care Research: A Call for Adapting Rules Governing Exception from Informed Consent (EFIC) Studies Am. J. Bioethics (IF 5.786) Pub Date : 2020-01-02 Ethan Cowan; Kate Sahan; Mark Sheehan
(2020). Misuse of “Usual Care” in Emergency Care Research: A Call for Adapting Rules Governing Exception from Informed Consent (EFIC) Studies. The American Journal of Bioethics: Vol. 20, No. 1, pp. 59-61.
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Re-envisioning “Doing Everything” for an Infant with Trisomy 18 Am. J. Bioethics (IF 5.786) Pub Date : 2020-01-02 Anita Tarzian
(2020). Re-envisioning “Doing Everything” for an Infant with Trisomy 18. The American Journal of Bioethics: Vol. 20, No. 1, pp. 62-63.
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Let It Be: The Evolving Standard of Care for Trisomy 18 Am. J. Bioethics (IF 5.786) Pub Date : 2020-01-02 Michael Kochan; Lucy Davidoff; Alison Falck
(2020). Let It Be: The Evolving Standard of Care for Trisomy 18. The American Journal of Bioethics: Vol. 20, No. 1, pp. 64-65.
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You Can’t Always Get What You Want… We Will Help You Get What You Need Am. J. Bioethics (IF 5.786) Pub Date : 2020-01-02 Lucia D. Wocial
(2020). You Can’t Always Get What You Want… We Will Help You Get What You Need. The American Journal of Bioethics: Vol. 20, No. 1, pp. 65-67.
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Ethics and the Importance of Good Clinical Practices Am. J. Bioethics (IF 5.786) Pub Date : 2020-01-02 Katherine E. Nelson; Annie Janvier; Pamela G. Nathanson; Chris Feudtner
(2020). Ethics and the Importance of Good Clinical Practices. The American Journal of Bioethics: Vol. 20, No. 1, pp. 67-70.
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Diverting Opioid Diversion: Does It Justify Randomly Screening Palliative Care Patients? Am. J. Bioethics (IF 5.786) Pub Date : 2020-01-02 Leah R. Eisenberg
(2020). Diverting Opioid Diversion: Does It Justify Randomly Screening Palliative Care Patients? The American Journal of Bioethics: Vol. 20, No. 1, pp. 71-72.
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Getting Beneath the Tip of the Iceberg: Suspected Opioid Diversion Am. J. Bioethics (IF 5.786) Pub Date : 2020-01-02 Kristy Deep; Rebecca Bartley Yarrison
(2020). Getting Beneath the Tip of the Iceberg: Suspected Opioid Diversion. The American Journal of Bioethics: Vol. 20, No. 1, pp. 73-75.
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Drug Testing Is No Substitute for Honesty or Addiction Risk Reduction Am. J. Bioethics (IF 5.786) Pub Date : 2020-01-02 Tim Lahey
(2020). Drug Testing Is No Substitute for Honesty or Addiction Risk Reduction. The American Journal of Bioethics: Vol. 20, No. 1, pp. 75-77.
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You’re in…But This Service Requires Drug Testing Am. J. Bioethics (IF 5.786) Pub Date : 2020-01-02 Jillian Boerstler
(2020). You’re in…But This Service Requires Drug Testing. The American Journal of Bioethics: Vol. 20, No. 1, pp. 78-80.
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Is It Time to Rethink Health Care Ethics? Am. J. Bioethics (IF 5.786) Pub Date : 2020-01-02 Reviewed by Ira Bedzow
(2020). Is It Time to Rethink Health Care Ethics? The American Journal of Bioethics: Vol. 20, No. 1, pp. W1-W2.
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Letter to the Editor: The Necessity of Teaching Medical Students to Voice Their Values Am. J. Bioethics (IF 5.786) Pub Date : 2020-01-02 Ira Bedzow
(2020). Letter to the Editor: The Necessity of Teaching Medical Students to Voice Their Values. The American Journal of Bioethics: Vol. 20, No. 1, pp. W3-W4.
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Response to Open Peer Commentaries “Taxonomizing Views of Clinical Ethics Expertise” Am. J. Bioethics (IF 5.786) Pub Date : 2020-01-02 Abram Brummett; Erica Salter
(2020). Response to Open Peer Commentaries “Taxonomizing Views of Clinical Ethics Expertise”. The American Journal of Bioethics: Vol. 20, No. 1, pp. W5-W8.
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Response to Open Peer Commentaries on “Ethics and Collateral Findings in Pragmatic Clinical Trials” Am. J. Bioethics (IF 5.786) Pub Date : 2020-01-02 Stephanie Morain; Debra Mathews; Juli Murphy Bollinger; Jeremy Sugarman
(2020). Response to Open Peer Commentaries on “Ethics and Collateral Findings in Pragmatic Clinical Trials”. The American Journal of Bioethics: Vol. 20, No. 1, pp. W9-W11.
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Response to Open Peer Commentaries on “Misrepresenting ‘Usual Care’ in Research: An Ethical and Scientific Error” Am. J. Bioethics (IF 5.786) Pub Date : 2020-01-02 Ruth Macklin; Charles Natanson
(2020). Response to Open Peer Commentaries on “Misrepresenting ‘Usual Care’ in Research: An Ethical and Scientific Error”. The American Journal of Bioethics: Vol. 20, No. 1, pp. W12-W14.
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Recollections of Dr. Elisabeth Kübler-Ross at the University of Chicago (1965–70) Am. J. Bioethics (IF 5.786) Pub Date : 2019-11-20 Mark Siegler
(2019). Recollections of Dr. Elisabeth Kübler-Ross at the University of Chicago (1965–70) The American Journal of Bioethics: Vol. 19, No. 12, pp. 1-2.
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Fifty Years Later: Reflections on the Work of Elisabeth Kübler-Ross M.D. Am. J. Bioethics (IF 5.786) Pub Date : 2019-11-20 Barbara Ross Rothweiler, Ken Ross
(2019). Fifty Years Later: Reflections on the Work of Elisabeth Kübler-Ross M.D. The American Journal of Bioethics: Vol. 19, No. 12, pp. 3-4.
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Appreciating the Legacy of Kübler-Ross: One Clinical Ethicist’s Perspective Am. J. Bioethics (IF 5.786) Pub Date : 2019-11-20 Daniel O. Dugan
(2019). Appreciating the Legacy of Kübler-Ross: One Clinical Ethicist’s Perspective. The American Journal of Bioethics: Vol. 19, No. 12, pp. 5-9.
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Thirty Years Later: An Oncologist Reflects on Kübler-Ross’s Work Am. J. Bioethics (IF 5.786) Pub Date : 2019-11-20 Laurie J. Lyckholm
(2019). Thirty Years Later: An Oncologist Reflects on Kübler-Ross’s Work. The American Journal of Bioethics: Vol. 19, No. 12, pp. 10-12.
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Everything I Really Needed to Know to Be a Clinical Ethicist, I Learned From Elisabeth Kübler-Ross* Am. J. Bioethics (IF 5.786) Pub Date : 2019-11-20 Mark G. Kuczewski
I analyze the insights present in Elisabeth Kübler-Ross’s seminal work, On Death and Dying that have laid the foundation for contemporary clinical bioethics as it is practiced by clinical ethics consultants. I highlight the landmark insight of Elisabeth Kübler-Ross that listening to dying patients reveals their needs and enables them to enjoy a better death. But more important for contemporary clinical ethics is that the text highlights three tensions that the clinical ethicist must navigate but can never truly resolve. Clinical ethicists must balance: (1) the need to hear the patient’s voice with the temptation to overly medicalize the case, (2) helping the patient achieve a better death with enabling the patient to die in the way he or she chooses, and (3) keeping professional distance with engaging the patient in a way that respects the intimacy of the patient’s disclosures.
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Psychotherapy at the End of Life Am. J. Bioethics (IF 5.786) Pub Date : 2019-11-20 Rebecca M. Saracino, Barry Rosenfeld, William Breitbart, Harvey Max Chochinov
Dr. Elisabeth Kübler-Ross is credited as one of the first clinicians to formalize recommendations for working with patients with advanced medical illnesses. In her seminal book, On Death and Dying, she identified a glaring gap in our understanding of how people cope with death, both on the part of the terminally ill patients that face death and as the clinicians who care for these patients. Now, 50 years later, a substantial and ever-growing body of research has identified “best practices” for end of life care and provides confirmation and support for many of the therapeutic practices originally recommended by Dr. Kübler-Ross. This paper reviews the empirical study of psychological well-being and distress at the end of life. Specifically, we review what has been learned from studies of patient desire for hastened death and the early debates around physician assisted suicide, as well as demonstrating how these studies, informed by existential principles, have led to the development of manualized psychotherapies for patients with advanced disease. The ultimate goal of these interventions has been to attenuate suffering and help terminally ill patients and their families maintain a sense of dignity, meaning, and peace as they approach the end of life. Two well-established, empirically supported psychotherapies for patients at the end of life, Dignity Therapy and Meaning Centered Psychotherapy are reviewed in detail.
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The Inner Lives of Doctors: Physician Emotion in the Care of the Seriously Ill Am. J. Bioethics (IF 5.786) Pub Date : 2019-11-20 Julie Childers, Bob Arnold
Elisabeth Kübler-Ross’ seminal 1969 work, On Death and Dying, opened the door to understanding individuals’ emotional experiences with serious illness and dying. Patient’s emotions, however, are only half the story in the patient-physician relationship. In recent years physicians’ emotional reactions have gotten more attention. These sometimes-unacknowledged emotions influence how we approach our work, including life and death decisions. This article reviews some of the main emotions physicians experience when caring for seriously ill and dying patients and the challenges physicians face in regulating their emotions in a professional setting. We also discuss some of the ways that physician emotion may influence medical decision-making and contribute to conflict. Attention to the emotional level of physician experience may promote better care.
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The Premodern Sensibility of Elisabeth Kübler-Ross in a Metamodern Age: What On Death and Dying Means Now Am. J. Bioethics (IF 5.786) Pub Date : 2019-11-20 Anthony L Back
(2019). The Premodern Sensibility of Elisabeth Kübler-Ross in a Metamodern Age: What On Death and Dying Means Now. The American Journal of Bioethics: Vol. 19, No. 12, pp. 35-37.
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Hopes, Therapeutic Honesty, and Adaptation in the Midst of Dying and Death Am. J. Bioethics (IF 5.786) Pub Date : 2019-11-20 Chris Feudtner, Douglas L. Hill
(2019). Hopes, Therapeutic Honesty, and Adaptation in the Midst of Dying and Death. The American Journal of Bioethics: Vol. 19, No. 12, pp. 37-39.
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Agency at Life’s End Am. J. Bioethics (IF 5.786) Pub Date : 2019-11-20 Christoph Rehmann-Sutter
(2019). Agency at Life’s End. The American Journal of Bioethics: Vol. 19, No. 12, pp. 40-41.
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Holding On and Letting Go: Anticipatory Grief and Surrogate Choices at the End of Life Am. J. Bioethics (IF 5.786) Pub Date : 2019-11-20 Michael Cholbi
(2019). Holding On and Letting Go: Anticipatory Grief and Surrogate Choices at the End of Life. The American Journal of Bioethics: Vol. 19, No. 12, pp. 42-43.
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Dealing With the Tension Between the Patient’s Wish to Die and Professional Attitudes Toward a ‘Good Death’ Am. J. Bioethics (IF 5.786) Pub Date : 2019-11-20 Suzanne Metselaar, Guy Widdershoven
(2019). Dealing With the Tension Between the Patient’s Wish to Die and Professional Attitudes Toward a ‘Good Death’. The American Journal of Bioethics: Vol. 19, No. 12, pp. 44-45.
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Deconstructing Dignity in Elisabeth Kübler-Ross’s On Death and Dying Am. J. Bioethics (IF 5.786) Pub Date : 2019-11-20 Greg Yanke
(2019). Deconstructing Dignity in Elisabeth Kübler-Ross’s On Death and Dying. The American Journal of Bioethics: Vol. 19, No. 12, pp. 46-47.
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Kübler-Ross and Bioethics: A Cautionary Tale Am. J. Bioethics (IF 5.786) Pub Date : 2019-11-20 Robert Baker
(2019). Kübler-Ross and Bioethics: A Cautionary Tale. The American Journal of Bioethics: Vol. 19, No. 12, pp. 48-49.
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Elisabeth Kübler-Ross: A Pioneer Thinker, Influential Teacher and Contributor to Clinical Ethics Am. J. Bioethics (IF 5.786) Pub Date : 2019-11-20 John J. Paris, Brian M. Cummings
(2019). Elisabeth Kübler-Ross: A Pioneer Thinker, Influential Teacher and Contributor to Clinical Ethics. The American Journal of Bioethics: Vol. 19, No. 12, pp. 49-51.
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On Death & Dying: Revisiting the Roots of Palliative Care and a Path Forward Am. J. Bioethics (IF 5.786) Pub Date : 2019-11-20 Zachary S. Sager, Susan D. Block
(2019). On Death & Dying: Revisiting the Roots of Palliative Care and a Path Forward. The American Journal of Bioethics: Vol. 19, No. 12, pp. 51-54.
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Elisabeth Kübler-Ross as Astrophysicist: Emotional Intelligence and Resilience Unlock the Black Hole of Physician Burnout, Moral Distress, and Compassion Fatigue Am. J. Bioethics (IF 5.786) Pub Date : 2019-11-20 Adjoa Boateng, Rebecca Aslakson
(2019). Elisabeth Kübler-Ross as Astrophysicist: Emotional Intelligence and Resilience Unlock the Black Hole of Physician Burnout, Moral Distress, and Compassion Fatigue. The American Journal of Bioethics: Vol. 19, No. 12, pp. 54-57.
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Predicting a “Lazarus Effect” in Patients With Advanced Cancer Near the End of Life: Prognostic Uncertainty, Oncologists’ Emotions, and Ethical Questions Am. J. Bioethics (IF 5.786) Pub Date : 2019-11-20 Chithra R. Perumalswami, Reshma Jagsi, Susan Dorr Goold
(2019). Predicting a “Lazarus Effect” in Patients With Advanced Cancer Near the End of Life: Prognostic Uncertainty, Oncologists’ Emotions, and Ethical Questions. The American Journal of Bioethics: Vol. 19, No. 12, pp. 57-60.
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Personal-Professional Boundaries and Ethical Issues in Palliative Care Am. J. Bioethics (IF 5.786) Pub Date : 2019-11-20 Keith M. Swetz, Sandra L. Frazier, Jarrett W. Richardson, Tait D. Shanafelt
(2019). Personal-Professional Boundaries and Ethical Issues in Palliative Care. The American Journal of Bioethics: Vol. 19, No. 12, pp. 60-62.
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Cultures Shifts and Added Resources: How the Physician Experience in Caring for the Dying Patient has Evolved Am. J. Bioethics (IF 5.786) Pub Date : 2019-11-20 Seema Amin, Ricki Carroll
(2019). Cultures Shifts and Added Resources: How the Physician Experience in Caring for the Dying Patient has Evolved. The American Journal of Bioethics: Vol. 19, No. 12, pp. 63-64.
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Exploring the Emotional Labor of Medical Trainees in the Setting of Ethics Education Am. J. Bioethics (IF 5.786) Pub Date : 2019-11-20 Margaret Waltz, R. Jean Cadigan, Arlene M. Davis
(2019). Exploring the Emotional Labor of Medical Trainees in the Setting of Ethics Education. The American Journal of Bioethics: Vol. 19, No. 12, pp. 65-66.
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To Cure Sometimes, To Relieve Often, and To Comfort Always* Am. J. Bioethics (IF 5.786) Pub Date : 2019-11-20 Rosalyn Stewart, Valerie Gray Hardcastle
(2019). To Cure Sometimes, To Relieve Often, and To Comfort Always*. The American Journal of Bioethics: Vol. 19, No. 12, pp. 66-68.
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Diverse Approaches to Meaning-Making at the End of Life Am. J. Bioethics (IF 5.786) Pub Date : 2019-11-20 Hollen N. Reischer, John Beverley
(2019). Diverse Approaches to Meaning-Making at the End of Life. The American Journal of Bioethics: Vol. 19, No. 12, pp. 68-70.
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The Underappreciated Influence of Elisabeth Kübler-Ross on the Development of Palliative Care for Children Am. J. Bioethics (IF 5.786) Pub Date : 2019-11-20 Bryan A. Sisk, Justin N. Baker
(2019). The Underappreciated Influence of Elisabeth Kübler-Ross on the Development of Palliative Care for Children. The American Journal of Bioethics: Vol. 19, No. 12, pp. 70-72.
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Caring for Dying Children Am. J. Bioethics (IF 5.786) Pub Date : 2019-11-20 Edwin N. Forman, Rosalind Ekman Ladd
(2019). Caring for Dying Children. The American Journal of Bioethics: Vol. 19, No. 12, pp. 73-74.
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On Death and Dying at the Beginning of Life: Grieving the Stillborn Baby Am. J. Bioethics (IF 5.786) Pub Date : 2019-11-20 Joyeeta G. Dastidar
(2019). On Death and Dying at the Beginning of Life: Grieving the Stillborn Baby. The American Journal of Bioethics: Vol. 19, No. 12, pp. 74-77.
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Why It is Important to Consider Social Support When Assessing Organ Transplant Candidates? Am. J. Bioethics (IF 5.786) Pub Date : 2019-10-24 José R. Maldonado
(2019). Why It is Important to Consider Social Support When Assessing Organ Transplant Candidates? The American Journal of Bioethics: Vol. 19, No. 11, pp. 1-8.
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Principles of Biomedical Ethics: Marking Its Fortieth Anniversary Am. J. Bioethics (IF 5.786) Pub Date : 2019-10-24 Tom Beauchamp, James Childress
(2019). Principles of Biomedical Ethics: Marking Its Fortieth Anniversary. The American Journal of Bioethics: Vol. 19, No. 11, pp. 9-12.
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Should Lack of Social Support Prevent Access to Organ Transplantation? Am. J. Bioethics (IF 5.786) Pub Date : 2019-10-24 Kelsey N. Berry, Norman Daniels, Keren Ladin
Transplantation programs commonly rely on clinicians’ judgments about patients’ social support (care from friends or family) when deciding whether to list them for organ transplantation. We examine whether using social support to make listing decisions for adults seeking transplantation is morally legitimate, drawing on recent data about the evidence-base, implementation, and potential impacts of the criterion on underserved and diverse populations. We demonstrate that the rationale for the social support criterion, based in the principle of utility, is undermined by its reliance on tenuous evidence. Moreover, social support requirements may reinforce transplant inequities, interfere in patients’ personal relationships, and contribute to biased and inconsistent listing procedures. As such, accommodating the needs of patients with limited social support would better balance ethical commitments to equity, utility, and respect for persons in transplantation. We suggest steps for researchers, transplantation programs, and policymakers to improve fair use of social support in transplantation.
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