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Living Donation by Individuals with Life-Limiting Conditions

Published online by Cambridge University Press:  01 January 2021

Lainie Friedman Ross  and
J. Richard Thistlethwaite
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Abstract

The traditional living donor was very healthy. However, as the supply-demand gap continues to expand, transplant programs have become more accepting of less healthy donors. This paper focuses on the other extreme, asking whether and when individuals who have life-limiting conditions (LLC) should be considered for living organ donation. We discuss ethical issues raised by 1) donation by individuals with progressive severe debilitating disease for whom there is no ameliorative therapy; and 2) donation by individuals who are imminently dying or would die by the donation process itself.

Type
Independent Articles
Information
Journal of Law, Medicine & Ethics , Volume 47 , Issue 1: Sharing Data in a Medical Information Commons , Spring 2019 , pp. 112 - 122
Copyright
Copyright © American Society of Law, Medicine and Ethics 2019

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References

Bia, M. J., Ramos, E. L., Danovitch, G. M. et al., “Evaluation of Living Renal Donors: The Current Practice of US Transplant Centers,” Transplantation 60, no. 4 (1995): 322-327; and D.A. Mandelbrot, M. Pavlakis, G. M. Danovitch et al., “The Medical Evaluation of Living Kidney Donors: A Survey of US Transplant Centers,” American Journal of Transplantation 7, no. 10 (2007): 2333–2343.Google Scholar
Rakké, Y. S., Zuidema, W. C., Hilhorst, M. T. et al., “Seriously Ill Patients as Living Unspecified Kidney Donors: Rationale and Justification,” Transplantation 99, no. 1 (2015): 232-235 at 234.CrossRefGoogle Scholar
Id.Google Scholar
Id., 234.Google Scholar
Id., 233Google Scholar
Id.Google Scholar
Id.Google Scholar
Mezrich, J. and Scalea, J., “As They Lay Dying,” The Atlantic, April 2015, available at <http://www.theatlantic.com/magazine/archive/2015/04/as-they-lay-dying/386273/> (last visited January 23, 2019).+(last+visited+January+23,+2019).>Google Scholar
Id.Google Scholar
Murray, J. E., “Organ Transplantation: The Practical Possibilities” in Wolstenholme, G. E. W. and O'Connor, M., eds. Ethics in Medical Progress: With Special Reference to Transplantation (Boston, MA: Little, Brown and Company): 59.Google Scholar
See, for example, Ibrahim, H. N., Akkina, S. K., Leister, E. et al., “Pregnancy Outcomes after Kidney Donation,” American Journal of Transplantation 9, no. 4 (2009): 825-834; A. B. Massie, A. D. Muzaale, X. Luo et al., “Quantifying Postdo-nation Risk of ESRD in Living Kidney Donors,” Journal of the American Society of Nephrology (JASN) 28, no. 9 (2017): 2749-2755; G. Mjøen, S. Hallan, A. Hartmann et al., “Long-term Risks for Kidney Donors,” Kidney International 86, no. 1 (2014): 162-167; and A. D. Muzaale, A. B. Massie, M-C. Wang et al., “Risk of End-stage Renal Disease Following Live Kidney Donation,” JAMA 311, no. 6 (2014): 579-586.CrossRefGoogle Scholar
Ross, L. F. and Thistlethwaite, J. R., “An Ethical Framework for Living Donor Transplantation,” (2018) In submission.CrossRefGoogle Scholar
National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research (Washington DC: Government Printing Office, April 18 , 1978), available at <http://www.hhs.gov/ohrp/humansubjects/guidance/belmont.html> (last visited January 23, 2019).+(last+visited+January+23,+2019).>Google Scholar
Kipnis, K., “Vulnerability in Research Subjects: A Bioethical Taxonomy,” in The National Bioethics Advisory Commission (NBAC), Ethical and Policy Issues in Research Involving Human Participants Volume II Commissioned Papers and Staff Analysis (Bethesda, Maryland, August 2001): G1-13; and K. Kipnis, “Seven Vulnerabilities in the Pediatric Research Subject,” Theoretical Medicine and Bioethics 24, no. 2 (2013): 107–120.Google Scholar
Ross, L. F and Thistlethwaite, J. R., “Prisoners as Living Donors: A Vulnerabilities Analysis,” Cambridge Quarterly of Healthcare Ethics 27, no. 1 (2018): 93-108.CrossRefGoogle Scholar
Elliott, C., “Doing Harm: Living Organ Donors, Clinical Research and the Tenth Man,” Journal of Medical Ethics 21, no. 2 (1995): 91-96.CrossRefGoogle Scholar
See Mandelbrot et al., supra note 1.Google Scholar
Denu, R. A., Mendonca, E. A., and Fost, N., “Potential Yield of Imminent Death Donation,” American Journal of Transplantation 18, no. 2 (2018): 486-491.CrossRefGoogle Scholar
See Rakké et al., “Seriously ill patients,” supra note 2.Google Scholar
Back, A. L., Young, J. P., McCown, E., et al. “Abandonment at the End of Life from Patient and Clinician Perspectives: Loss of Continuity and Lack of Closure,” Archives of Internal Medicine 169, no. 5 (2009): 474–479; and D. Koon, “Meet the Woman Who Cared for Hundreds of Abandoned Gay Men Dying of AIDS,” OUT, 2016, available at <https://www.out.com/positive-voices/2016/5/19/meet-woman-who-cared-hundreds-abandoned-gay-men-dying-aids> (last visited January 23, 2019).CrossRefGoogle Scholar
Challenor, J. and Watts, J., “‘It Seemed Churlish Not to’: How Living Non-Directed Kidney Donors Construct their Altruism,” Health 18, no. 4 (2014): 388-405; and C. L. Jacobs, D. Roman et al., “Twenty-Two Nondirected Kidney Donors: an Update on a Single Center's Experience,” American Journal of Transplantation 4, no. 7 (2004): 1110-1116.CrossRefGoogle Scholar
See, for example, Back et al., supra note 20; Koon, supra note 20; and Pohl, J. M., Given, C. W., Collins, C. E. et al. “Social Vulnerability and Reactions to Caregiving in Daughters and Daughters-in-Law Caring for Disabled Aging Parents,” Health Care for Women International 15, no. 5 (1994): 385-395.CrossRefGoogle Scholar
LaPointe Rudow, D., “The Living Donor Advocate: A Team Approach to Educate, Evaluate, and Manage Donors Across the Continuum,” Progress in Transplantation 19, no. 1 (2009): 64-70; and J. L. Steel, A. Dunlavy, M. Friday, et al. “The Development of Practice Guidelines for Independent Living Donor Advocates,” Clinical Transplantation 27 (2013): 178–184.CrossRefGoogle Scholar
Department of Health and Human Services, “Part II. Centers for Medicare & Medicaid Services 42 CFR Parts 405, 482, 488, and 498 Medicare Program; Hospital Conditions of Participation: Requirements for Approval and Re-Approval of Transplant Centers to Perform Organ Transplants; Final Rule. Rules and Regulations,” Federal Register 72, no. 61 (March 30 , 2007): 15198-15280; and United Network for Organ Sharing (UNOS)/Organ Procurement and Tissue Network (OPTN), Appendix B, Section XIII, 2007.Google Scholar
Mezrich and Scalea, “Lay Dying,” supra note 8.Google Scholar
Id.Google Scholar
Elliott, supra note 16, 95.CrossRefGoogle Scholar
Rakké et al., “Seriously Ill Patients,” supra note 2 at 234.Google Scholar
See, for example, Jacobs, C., Johnson, E., Anderson, K. et al, “Kidney Transplants from Living Donors: How Donation Affects Family Dynamics,” Advances in Renal Replacement Therapy 5, no. 2 (1998): 89-97; C. L. Jacobs, C. R. Gross, E. E. Messersmith, et al. on behalf of the RELIVE Study Group, “Emotional and Financial Experiences of Kidney Donors over the Past 50 Years: The RELIVE Study,” Clinical Journal of the American Society of Nephrology 10, no. 12 (2015): 22-231; R. G. Simmons, S. K. Marine, and R. L. Simmons, Gift of Life: The Effect of Organ Transplantation on Individual, Family, and Societal Dynamics (Oxford: Transaction Books; 1987).CrossRefGoogle Scholar
National Conference of Commissioners on Uniform State Laws, Uniform Determination of Death Act, Drafted July-August 1980, approved by the American Medical Association October 19, 1980, Approved by the American Bar Association February 10, 1981, adopted by the states throughout 1981, available at <http://people.bu.edu/wwildman/courses/thth/projects/thth_projects_2003_lewis/udda.pdf> (last visited January 24, 2019).+(last+visited+January+24,+2019).>Google Scholar
Fost, N., “Organs from Anencephalic Infants: An Idea Whose Time has Not Yet Come,” Hastings Center Report 18, no. 5 (1998): 5–10; and J. A. Robertson, “Relaxing the Death Standard for Organ Donation in Pediatric Situations,” in D. Mathieu (ed.), Organ Substitution Technology: Ethical, Legal, and Public Policy Issues (Boulder, CO: Westview Press, 1988): 69–76.Google Scholar
Sade, R. M., “Brain Death, Cardiac Death, and the Dead Donor Rule,” Journal of the South Carolina Medical Association 107, no. 4 (2011): 146-149, 147.Google Scholar
Arnold, R. M. and Youngner, S. J., “The Dead Donor Rule: Should We Stretch it, Bend it, or Abandon it?” Kennedy Institute of Ethics Journal 3, no. 2 (1993): 263-78, 264-265.CrossRefGoogle Scholar
Ethically, the “hands-off ” period between the cessation of pulse and respiration and procurement should also ensure that brain function has also ceased because one would not want to be declaring a person dead, or procuring their organs if they were still conscious. This is discussed in Veatch, R. M. and Ross, L. F., Defining Death: The Case for Choice (Washington DC: Georgetown University Press, 2016): 76-78.Google Scholar
Morrisey, P. E., “The Case for Kidney Donation Before Endof-Life Care,” American Journal of Bioethics 12, no. 6 (2012): 1-8, 1.CrossRefGoogle Scholar
Id., 1.Google Scholar
Id., 2.Google Scholar
While not mentioned by Morrissey, it is clear that if the patient dies quickly enough after treatment is withdrawn, that he would support the family's authorization to return the person to the operating room for DCD procurement of other organs.Google Scholar
Smith, M. J., Rodríguez-Arias, D., and Ortega, I., “Avoiding Violation of the Dead Donor Rule: The Costs to Patients,” American Journal of Bioethics 12, no. 6 (2012): 15-17.CrossRefGoogle Scholar
Morrison, W., “Organ Donation Prior to Death — Balancing Benefits and Harms,” American Journal of Bioethics 12, no. 6 (2012): 14-15, 15.Google Scholar
Boulton, L. on behalf of the OPTN/UNOS Ethics Committee, “Ethical Considerations of Imminent Death Donation,” 2016, 1, available at <https://optn.transplant.hrsa.gov/media/1918/ethics_ethical_implications_of_idd_20160815.pdf> (last visited January 24, 2019).+(last+visited+January+24,+2019).>Google Scholar
Id, 1.Google Scholar
See, Arnold and Youngner, supra note 33, 271.Google Scholar
See Boulton, supra note 41, 1.Google Scholar
See Boulton, supra note 41, 2.Google Scholar
Miller, F. G. and Truog, R. D., Death, Dying and Organ Transplantation: Reconstructing Medical Ethics at the End of Life (New York: Oxford University Press, 2012); and D. Wilkinson and J. Savulescu, “Should We Allow Organ Donation Euthanasia? Alternatives for Maximizing the Number and Quality of Organs for Transplantation,” Bioethics 26, no. 1 (2012): 32-48.Google Scholar
Nygren, S. L., “Organ Donation by Incompetent Patients,” University of Chicago Legal Forum 2006, no. 1 (2006): 471-502, available at <http://chicagounbound.uchicago.edu/uclf/vol2006/iss1/16> (last visited January 24, 2019).Google Scholar
See, National Commission, supra note 13.Google Scholar
Gill, C. J. “Disability, Constructed Vulnerability, and Socially Conscious Palliative Care,” Journal of Palliative Care 22, no. 3 (2006): 183-189; D. Stienstra and H. M. Chochinov, “Vulnerability, Disability, and Palliative End-of-Life Care,” Journal of Palliative Care 22, no. 3 (2006):166-174.CrossRefGoogle Scholar
Kant, I., Grounding for the Metaphysics of Morals, 1785, translated by Ellington, J. W. (Indianapolis: Hackett Publishing, 1981).Google Scholar
See Gill, supra note 49; and Stienstra and Chochinov, supra note 49.Google Scholar
See Miller and Truog, supra note 46, 144-147.Google Scholar
See Kant, supra note 50.Google Scholar
Kotloff, R. M., Blosser, S., Fulda, G. J. et al., for the Society of Critical Care Medicine/American College of Chest Physicians/Association of Organ Procurement Organizations Donor Management Task Force, “Management of the Potential Organ Donor in the ICU: Society of Critical Care Medicine/American College of Chest Physicians/Association of Organ Procurement Organizations Consensus Statement,” Critical Care Medicine 43, no. 6 (2015): 1291-1325.CrossRefGoogle Scholar
See, Veatch and Ross, supra note 34, 76-78.Google Scholar
Elliott, supra note 16, 59.CrossRefGoogle Scholar
Arnold and Youngner, supra note 33, 264 and 265.Google Scholar