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21 Revising the Uniform Anatomical Gift Act – the role of physicians in shaping legislation
The Case
In Pennsylvania, a man lies in critical condition. He has indicated in his living will that he would not want his life maintained “on machines.” He has a do-not-resuscitate (DNR) order. He has also designated on his driver’s license that he wishes to be an organ donor. His physicians are prevented from discussing of palliative care options by a new state law based on the new Uniform Anatomical Gift Act (2006). The new law prioritizes management of potential organ donors to promote organ viability, even if it compromises palliative care. According to the new law, the family may not intervene when, despite his DNR order, the patient is resuscitated from a hypotensive arrest and mechanical ventilation is continued. After evaluation for organ donation, he is taken to an operating room for withdrawal of life-sustaining treatment. Shortly thereafter he dies and his organs are procured for transplantation.
In Washington State, an anesthesiologist who is unaware of these events discovers that adoption of a state law based on the new UAGA (2006) is about to pass out of committee in the state senate and will likely be signed by the governor. She is troubled by several problems with the legislation, one of which is that it would permit organ procurement agencies to override a patient’s living will and continue or even initiate life-sustaining treatments to promote organ viability, without the agreement of the patient or the patient’s surrogate decision-makers.
The original Uniform Anatomical Gift Act (UAGA) is model legislation for states to emulate, and to promote uniform laws among states. It was enacted in 1968 and revised in 1987, assuring patients of their rights to donate their organs for transplantation after death. More than 40 years later, organ transplantation is a fixture in modern health care in developed countries. But controversies in organ transplantation persist: particularly those involving rights of donors versus the needs of recipients, the balance between end-of-life (EOL) care and preservation of transplantable organs, and concerns for vulnerable populations who may experience either barriers to organ donation or, alternatively, become the victims of rules that do not fairly recognize their rights and desires to refuse organ donation.
The original version of the 2006 revision of the UAGA and its consequences is an object lesson in how well-meaning experts unintentionally crossed critical ethical boundaries in their desire to improve organ donation. It is also a story of how legislative actions can profoundly affect clinical practice in anesthesiology, and an illustration that clinical practitioners have important roles to play in promoting ethical legislation. A revised version of the UAGA 2006 has now been adopted in most of the US, but the story still serves to remind us that our ethical responsibilities do not end at the hospital doors, but include a duty to help shape healthcare legislation.
The 1987 revision of the original UAGA never achieved national ratification and was only adopted by 26 states.1 Organ donation and transplantation often transcends state boundaries, and the US needed uniform rules for organ donation and transplantation that could be adopted in all 50 states. In addition, despite a seemingly clear mandate in the first UAGA to protect the rights of persons to donate organs, the decisions of donors to make their organs available were often being treated by physicians and families as though they were merely suggestions rather than formal mandates. It is still common for donors’ wishes to be countermanded once they have died or can no longer speak for themselves, because of family objections to organ donation.2 Some physicians are reluctant to proceed with organ donation over family objections, even when the donor’s wishes are clear – in part out of fear of litigation, in part due to uncertainty about legal obligations. This is occurring while demand for transplantable organs far outstrips supply, and loss of organs from willing donors because of objections of third parties is perceived as a barrier to increasing organ availability.
The UAGA (2006) sought to accomplish several explicit goals set forth in the preamble, among them: (1) to address the critical organ shortage by providing additional ways to make donations; (2) to strengthen language barring others from overriding a donor’s decision to donate organs; (3) to broaden opportunities for organ donation by expanding the definition of persons who could agree to donate a patient’s organs when the patient could not do so for him or herself to non-family members, such as “an adult who exhibited special care and concern for the decedent;” (4) to provide an explicit way for persons who did not wish to donate organs to refuse to do so; and (5) to expand the number of transplantable organs by promoting processes biased toward preserving organ viability.1
Respect for patient autonomy
A major flaw in the UAGA revision was the manner in which it dealt with conflicts between provisions of living wills and procedures to promote organ donation. UAGA 2006 permitted, even required, institution of measures to “ensure the medical suitability of the organ for transplantation,” stating that “therapy may not be withheld or withdrawn from the prospective donor, unless the declaration [of a desire to be an organ donor] expressly provides to the contrary.”1 The National Conference of Commissioners on Uniform State Laws (NCCUSL) assumed that organ donors always want to prioritize organ donation over other EOL decisions, although they had no empiric evidence for this presumption. There is evidence that the major concerns of patients at the EOL are control over the timing and location of death, relief of symptoms including pain, dyspnea, anxiety and depression, avoidance of a prolonged death, and preservation of therapeutic options including withdrawal of life-sustaining measures and terminal sedation.3 The lack of basis for prioritizing organ donation ahead of other EOL concerns led to criticism of the original UAGA 2006.4 Critics of the original UAGA 2006 point out that, even if a majority of dying patients would agree to suspend their living wills in order to become donors, the ethical principle of respect for autonomy demands that we respect the rights of patients who do not agree, and are seeking EOL care that conforms with different goals. Thus a more flexible approach would be warranted.
The UAGA (2006) provided that once a person had designated that they are an organ donor, there were only limited ways in which their wishes could be countermanded. The donor could rescind their agreement by executing a new legal document of recission, they could destroy the original document agreeing to organ donation, or they could provide verbal rescission of the agreement to donate. Each of these measures required two witnesses, one of whom “could not be an interested party,” such as a family member or transplantation representative.1 These provisions were intended to promote respect for the wishes of donors, but they failed to adequately respect the autonomy of persons whose wishes regarding organ donation change with time and circumstance. They also failed to take into account practical aspects of EOL decision-making. Donors may lack the opportunity or be unable to execute new legal documents as EOL approaches and they become incapacitated. Many depend on family members to represent them in medical decision making when they are unable to make or express decisions for themselves. Legal and ethical principles in surrogate decision-making have traditionally recognized the legitimate role of family, since they presumably share common elements of culture, upbringing, values, and religious beliefs. And there may be no non-family members present when a last-minute rescission is expressed by a dying patient. Without the presence of such a “disinterested party,” late changes of heart would not necessarily be followed under the new law.
Respect for patient autonomy requires that patients be fully informed about implications that organ donation may have for other aspects of EOL care. UAGA 2006 required no such discussion, even though in its original form, its mandates clearly could be interpreted to say that EOL decisions to forgo life-saving interventions must be rescinded, and measures to promote organ viability must be initiated if a patient states that they want to be an organ donor. It is reasonable to assume that most patients do not understand that their EOL preferences and organ donation decisions impact each other, although the model law assumed that the potential conflict is understood and this prioritization has been made when an organ donor designation is created. A common way in which many people express their interest in becoming organ donors is to sign a statement on the back of their driver’s license, where there is no opportunity for “informed consent” about how that signature could potentially alter their other options for EOL care.
Related posts:
Informed consent and the pediatric patient
The use of ethics consultation regarding consent and refusal
Ethical considerations in interventional pain management
Conflicts of interest in research funding
Physician conscientious objection in anesthesiology practice
Opioid therapy in addicted patients: background and perspective from the US
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