The United States Revised Uniform Anatomical Gift Act (2006): New challenges to balancing patient rights and physician responsibilities

Joseph L. Verheijde1, Mohamed Y. Rady2, Joan McGregor3
1Departments of Physical Medicine and Rehabilitation, Mayo Clinic Hospital, Mayo Clinic Arizona, Phoenix, USA
2Critical Care Medicine, Mayo Clinic Hospital, Mayo Clinic Arizona, Phoenix, USA
3Department of Philosophy, Arizona State University, Tempe, USA

Tóm tắt

Abstract Advance health care directives and informed consent remain the cornerstones of patients' right to self-determination regarding medical care and preferences at the end-of-life. However, the effectiveness and clinical applicability of advance health care directives to decision-making on the use of life support systems at the end-of-life is questionable. The Uniform Anatomical Gift Act (UAGA) has been revised in 2006 to permit the use of life support systems at or near death for the purpose of maximizing procurement opportunities of organs medically suitable for transplantation. Some states have enacted the Revised UAGA (2006) and a few of those have included amendments while attempting to preserve the uniformity of the revised Act. Other states have introduced the Revised UAGA (2006) for legislation and remaining states are likely to follow soon. The Revised UAGA (2006) poses challenges to the Patient Self Determination Act (PSDA) embodied in advance health care directives and individual expression about the use of life support systems at the end-of-life. The challenges are predicated on the UAGA revising the default choice to presumption of donation intent and the use of life support systems to ensure medical suitability of organs for transplantation. The default choice trumps the expressed intent in an individual's advance health care directive to withhold and/or withdraw life support systems at the end-of-life. The Revised UAGA (2006) overrides advance directives on utilitarian grounds, which is a serious ethical challenge to society. The subtle progression of the Revised UAGA (2006) towards the presumption about how to dispose of one's organs at death can pave the way for an affirmative "duty to donate". There are at least two steps required to resolve these challenges. First, physicians and hospitals must fulfill their responsibilities to educate patients on the new legislations and document their preferences about the use of life support systems for organ donation at the end-of-life. Second, a broad based societal discussion must be initiated to decide if the Revised UAGA (2006) infringes on the PSDA and the individual's right of autonomy. The discussion should also address other ethical concerns raised by the Revised UAGA (2006), including the moral stance on 1) the interpretation of the refusal of life support systems as not applicable to organ donation and 2) the disregarding of the diversity of cultural beliefs about end-of-life in a pluralistic society.

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Tài liệu tham khảo

Patient Self-Determination Act (1991). http://www.fha.org/acrobat/Patient%20Self%20Determination%20Act%201990.pdf

Code of Federal Regulations, : Title 42-Public Health-Chapter IV--Centers for Medicare and Medicaid Services, Department of Health and Human Services, 42CFR489.100. Subpart I--Advance Directives . http://a257.g.akamaitech.net/7/257/2422/05dec20031700/edocket.access.gpo.gov/cfr_2003/octqtr/pdf/42cfr489.100.pdf

Whetstine LM: Advanced directives and treatment decisions in the intensive care unit. Crit Care. 2007, 11 (4): 150- 10.1186/cc5971

Teno J, Lynn J, Wenger N, Phillips RS, Murphy DP, Connors AFJ, Desbiens N, Fulkerson W, Bellamy P, Knaus WA, : Advance Directives for Seriously Ill Hospitalized Patients: Effectiveness with the Patient Self-Determination Act and the SUPPORT Intervention. J Am Geriatr Soc. 1997, 45 (4): 500-507.

Perkins HS: Controlling Death: The False Promise of Advance Directives. Annals of Internal Medicine. 2007, 147 (1): 51-57.

Tillyard ARJ: Ethics review: 'Living wills' and intensive care – an overview of the American experience. Crit Care. 2007, 11 (4): 219- 10.1186/cc5945

National Conference of Commissioners on Uniform State Laws, : Revised Uniform Anatomical Gift Act (2006) . http://www.anatomicalgiftact.org/DesktopDefault.aspx?tabindex=0&tabid=1

National Conference of Commissioners on Uniform State Laws, : Enactment News. Revised Uniform Anatomical Gift Act (2006). http://www.anatomicalgiftact.org/DesktopDefault.aspx?tabindex=2&tabid=72

Committee on Increasing Rates of Organ Donation-Board on Health Sciences Policy-Institute of Medicine: Organ Donation: Opportunities for Action. Edited by: Childress JF, Liverman CT. 2006, Washington, D.C. , The National Academies Press,

Bernat JL, D’Alessandro AM, Port FK, Bleck TP, Heard SO, Medina J, Rosenbaum SH, DeVita MA, Gaston RS, Merion RM, Barr ML, Marks WH, Nathan H, O’Connor K, Rudow DL, Leichtman AB, Schwab P, Ascher NL, Metzger RA, Mc Bride V, Graham W, Wagner D, J. W, Delmonic FL: Report of a National Conference on Donation after Cardiac Death. Am J Transplant. 2006, 6 (2): 281-291. 10.1111/j.1600-6143.2005.01194.x

President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, : President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Defining Death: A Report on the Medical, Legal and Ethical Issues in the Determination of Death. http://www.bioethics.gov/reports/past_commissions/index.html

Centers for Medicare & Medicaid Services- Department of Health and Human Services: Medicare and Medicaid Programs; Conditions for Coverage for Organ Procurement Organizations (OPOs); Final Rule. Federal Register. 2006, 71 (104): 30981 -301054.

Code of Federal Regulations, : Title 42--Public Health-Chapter IV--Centers for Medicare and Medicaid Services, Department of Health and Human Services. PART 482--Conditions of Participation for Hospitals- 42CFR 482.45 Condition of participation: Organ, tissue, and eye procurement. http://a257.g.akamaitech.net/7/257/2422/09nov20051500/edocket.access.gpo.gov/cfr_2005/octqtr/pdf/42cfr482.45.pdf

The Organ Procurement and Transplanation Network, : The Organ Procurement and Transplantation Network Policies, Policy 3.3. Organ Distribution: Acceptance Criteria. http://www.optn.org/policiesAndBylaws/policies.asp

Angus DC, Barnato AE, Linde-Zwirble WT, Weissfeld LA, Watson RS, Rickert TBA, Rubenfeld GD, : Use of intensive care at the end of life in the United States: An epidemiologic study. Crit Care Med. 2004, 32: 638-643. 10.1097/01.CCM.0000114816.62331.08

National Hospice and Palliative Care Organization. http://www.nhpco.org/templates/1/homepage.cfm

Palliative Care Policy Center. http://www.medicaring.org/index.html

Last Acts Committee: A Record of Accomplishment in End-of-Life Care. http://www.rwjf.org/newsroom/featureDetail.jsp?featureID=886&type=3

Last Acts Committee, : Means To A Better End. A Report in Dying In America Today. http://www.rwjf.org/files/publications/other/meansbetterend.pdf

National Conference of Commissioners on Uniform State Laws: ULC Response to Washington Post Article. http://www.anatomicalgiftact.org/DesktopDefault.aspx?tabindex=0&tabid=74

Cooper S: Cooper, S. Informed Consent and Malformed Consent. Edited by: Thinker A. http://www.americanthinker.com/2007/06/informed_consent_and_malformed.html

National Consensus Project For Quality Palliative Care SteeringCommittee: Clinical Practice Guidelines for Quality Palliative Care. http://www.nationalconsensusproject.org/Guidelines_Download.asp

Rady MY, Verheijde JL, McGregor J: Organ donation after circulatory death: the forgotten donor. Crit Care. 2006, 10 (5): 166-169. 10.1186/cc5038

Rady MY, Verheijde JL, McGregor J: Non-heart beating or cardiac death organ donation: Why we should care. J Hosp Med. 2007, 2 (5): 324-334. 10.1002/jhm.204