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NAAGazette

End-of-Life Care and Organ Donation: Is There an Irreconcilable Conflict?

Judy McKee, End of Life Health Care Project Coordinator and Counsel

Judy McKee, End of Life Health Care Project Coordinator and Counsel

Recently, I had to renew my Virginia driver’s license. I suppose this is one of those experiences that is shared with the majority of the population of the United States over the age of 16. A visit to the DMV is an equalizer; everyone has to wait; everyone fidgets; everyone either scowls or looks sympathetically at the young mother trying to control her three pre-school children. The distinguished gentleman sitting next to me was a recent immigrant from Uganda. As he was filling out his form, I noticed he stopped and looked quizzically at the question that is on most states’ driver’s license applications. Did he wish to be an organ donor? He turned to me, “Why do they ask this question? Is driving here so dangerous? Will they just cut me open and take whatever they want?”

The 1987 Uniform Anatomical Gift Act (UAGA) authorized the registering of organ donors via drivers’ licenses. Until this later version was adopted, states that had enacted the 1968 version of the UAGA required that gifts of organs be effected in the same manner as wills. By the 1980s, it had become clear that the increasing success rate of organ transplants, enabled by modern immunosuppression and more sophisticated surgical techniques, required the donation of more organs. Surveys had shown that most Americans were comfortable with the concept of organ transplantation, but that few had registered to donate their organs. The idea that licensed drivers could indicate their desire to be organ donors on drivers’ licenses was an innovative way to allow many more Americans to more easily give the “gift of life.”

Even with the driver’s license alternative, however, the need for transplantable organs has remained high. As of the first day of 2008, 98,033 people were awaiting organ donations.[1] Of this number, about 19 will die each day awaiting a transplant.[2] Most of the organs currently donated come from deceased donors. Seven organs can be taken for transplantation: the heart, lungs, liver, pancreas, two kidneys and the small intestine. In addition, a donor can give their eyes and numerous tissues, including bone.[3]

To address the still-critical shortage of organs, a panel of the National Conference of Commissioners on Uniform State Laws (NCCUSL) spent several years conferring with ethicists, lawyers, physicians, and other stakeholders to draft another version of the UAGA that would hopefully make more organs available for transplant. Preliminary research by the Association of Organ Procurement Organizations had revealed that state laws diverged on many issues and that there were choice-of-law and conflict-of-law issues that should be resolved to ease organ donation. Another problem discovered was that, under the earlier UAGA, healthcare agents were not authorized to make post-mortem organ donations. In addition, under the then-existing UAGA, one family member could veto a donation that the remaining family members wished to make.

The Revised Uniform Anatomical Gift Act of 2006 was approved by the NCCUSL in July 2006. The act expanded the list of people who could consent to an unconscious patient becoming a donor and made it clear that a person’s expressed decision to be an organ donor could not be revoked by anyone else. It provided for the making of an anatomical gift on a registry as well as via a driver’s license or a donor card. The revised act also authorized the gift of organs by any member of a class who was reasonably available if he or she were unaware of an objection by another member of that class. Other features of the act were designed to increase organ, tissue and eye donations.

Unfortunately, however, in the laudable effort to increase the number of available organs for transplant, the drafters of the 2006 act created an ethical issue for those providing end-of-life care. Under the act, unconscious patients who had signed donor cards but had also signed documents stating that they did not want ventilator or other care that would keep them alive would find their end-of-life care wishes trumped by the revised UAGA. Under the 2006 UAGA, the donor card has priority over the wishes expressed for end-of-life care; the act requires that all care necessary must be given to keep a patient’s organs viable until a transplant can take place.

In a recent article in the Annals of Internal Medicine, [4] the authors recount the horrific story of a patient who had a stroke and suffered irreversible brain injury. He had signed an advance directive that he not be kept alive by machines if there were “no hope.” He had also agreed to be an organ donor on his driver’s license. Under the 2006 version of the UAGA that the state had adopted, the man’s physician could not provide palliative care but, instead, had to reverse the patient’s do-not-resuscitate order and manage his end-of-life care to promote donation, not to provide comforting care to the dying man.

The assumption evidently made by the drafters of the 2006 UAGA was that a donor would prioritize organ donation over palliative care. Section 21 of the act permitted a patient with respiratory failure, for instance, to have unwanted intubation “to ensure the medical suitability of an organ for transplantation” — even if the patient had a signed advance directive expressly rejecting such therapy — because “ . . . therapy may not be withheld or withdrawn from the prospective donor” unless the advance directive expressly provided for such withholding.[5] It is a rare advance directive that records a patient’s priorities concerning palliative care versus organ donation.

To address this ethical minefield, the Commissioners approved revised wording for section 21.[6] Under this revised wording, if there is a conflict between the express wishes for end-of-life care and maintaining the viability of an organ for transplant, the patient-donor and the physician must confer to resolve that conflict. If the patient is incapacitated (a most likely scenario), then a patient’s agent, if there is one and if “reasonably available,” must resolve the conflict. Otherwise, “another person authorized by law other than” the UAGA will be asked to make that decision. The section continues that the conflict must be resolved as expeditiously as possible. And, finally, “Before resolution of the conflict, measures necessary to ensure the medical suitability of the part may not be withheld or withdrawn from the prospective donor if withholding or withdrawing the measures is not contraindicated by appropriate end-of-life care.”

Unfortunately, many states that enacted the 2006 UAGA have not enacted the revised language for section 21.[7] Moreover, this potential conflict between organ donation and end-of-life care in accordance with one’s wishes has not been generally publicized. It is ironic to think that the very law that was written to promote organ donation might, in fact, backfire if potential donors become aware that, in some states, organ donation is more important than providing end-of-life care in accordance with one’s wishes. Such a law feeds the concern of many potential donors that their organs will become more important than they are themselves as they near the end of their lives.

To ease this fear and to help accomplish the purpose that drove the enactment of the 2006 UAGA, states that enacted the original 2006 UAGA may wish to enact the revised version in their upcoming legislative sessions. In addition, in preparing advance directives, potential organ donors should be encouraged to express their own desires as to how they wish to prioritize care.

My conversation with the gentleman from Uganda ended with his agreeing to be a donor. Certainly, we should encourage organ donation as a gift that is the most intimate and life-affirming as any that could be given. However, we should also insist that our laws support our wishes and desires as to the type and intensity of care we receive at the end of our lives.

[1] United Network for Organ Sharing (UNOS) (visited Jan. 1,2008)(http://www.unos.org).

[2] U.S. Dep’t of Health and Human Servs., Health Resources and Servs. Admin. Healthcare Sys. Bureau, Div. Of Transplantation (visited Jan. 1, 2008) (http://www.organdonor.gov).

[3] Sheldon F. Kurtz and Christina Woodward Strong, “The 2006 Revised Uniform Anatomical Gift Act—A Law to Save Lives, Health Law Analysis, Feb. 2007, at 44.

[4] Michael A. DeVita and Arthur L. Caplan, “Caring for Organs or for Patients? Ethical Concerns about the Uniform Anatomical Gift Act (2006),” 147 Annals of Int. Med 876-79.

[5] Revised Uniform Anatomical Gift Act, 2006. The original section 21 read as follows:

b) If a prospective donor has a declaration or advance health-care directive, measures necessary to ensure the medical suitability of an organ for transportation or therapy may not be withheld or withdrawn from the prospective donor, unless the declaration expressly provides to the contrary.

[6] The revised version of section 21 reads as follows:

b) If a prospective donor has a declaration or advance health-care directive and the terms of the declaration or directive and the express or implied terms of a potential anatomical gift are in conflict with regard to the administration of measures necessary to ensure the medical suitability of a part for transplantation or therapy, the prospective donor’s attending physician and prospective donor shall confer to resolve the conflict. If the prospective donor is incapable of resolving the conflict, an agent acting under the prospective donor’s declaration or directive, or, if none, or the agent is not reasonably available, another person authorized by law other than this [act] to make health-care decisions on behalf of the prospective donor, shall act for the donor to resolve the conflict. The conflict must be resolved as expeditiously as possible. Information relevant to the resolution of the conflict may be obtained from the appropriate procurement organization and any other person authorized to make an anatomical gift for the prospective donor under Section 9. Before resolution of the conflict, measures necessary to ensure the medical suitability of the part may not be withheld or withdrawn from the prospective donor if withholding or withdrawing the measures is not contraindicated by appropriate end-of-life care.

[7] DeVita and Caplan, supra note 4, at 878, table 1.

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