When is an organ donor not an organ donor?

Abstract: The Uniform Anatomical Gift Act (UAGA) grants any competent adult the legal right to designate whether he or she wishes to donate his or her organs for transplantation after death. However, contextual issues may interfere with organ donation by individuals who want to be organ donors. This case report describes a 58-year-old male who had properly documented his desire to donate his organs after his death, but was not allowed to be an organ donor because of his relatives' opinions. Ethical and legal aspects of the case are discussed.

Key Words: organ donation, transplantation, Uniform Anatomical Gift Act

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The shortage of organs for transplantation remains an unsolved problem, and many patients wait extended periods of time for an organ from a suitable donor; some die while waiting. Although the legal basis for the process of postmortem organ donation is well established, contextual issues (ie, the circumstances that are the context of a case (1)) may interfere with or even prevent organ donation. This report discusses the case of a patient who had clearly documented his wish to be an organ donor after his death, and had satisfied the legal requirements for organ donation, but was not permitted to be a donor.

Case Report

A 58-year-old male with a history of hypertension and arteriosclerotic vascular disease was brought to the hospital after being found unconscious by his wife. Several days before this, he had complained of headache, and on the day of admission had come home early from work and taken aspirin with several glasses of water for a headache. He then became nauseous and went to the bathroom. His wife called an ambulance.

Other medical history included peripheral vascular disease, hyperlipidemia, femoral-popliteal bypass shunt, and right carotid endarterectomy. He had smoked more than a pack of cigarettes per day for more than 20 years. He drank alcohol (usually beer) about two times per week. His medications for hypertension had been recently adjusted because of inadequate control, and clopidogrel had been added to improve circulation.

Upon arrival in the emergency room, the patient was having tonic clonic seizures. Blood pressure was 267/149 mm Hg, pulse 120 bpm, and respirations 26 per minute. Pupils were fixed and dilated. After the seizure activity ceased, he had spontaneous extensor posturing and was unresponsive to painful stimuli. Glasgow Coma Scale score was graded as 3 (the lowest possible score). Computed tomographic scan of the brain revealed a massive left subdural hematoma and herniation of the cingulate gyrus. He was intubated, and, although his prognosis was considered to be poor, underwent craniotomy with evacuation of the subdural hematoma. He was described as "neurologically devastated." Five days after surgery, he showed no improvement. He required complete ventilator support, his pupils remained dilated and fixed, and his only response to stimuli was decorticate or decerebrate posturing. A family conference was convened, and the family was in unanimous agreement that "he would not want to live like this." They concluded that life support should be withdrawn.

Shortly after his admission to the hospital, the patient's wife had spoken with the chaplain and social worker and informed them that he had wished to be an organ donor in the event of his death. He carried in his wallet a signed organ donation card, and, in addition, had indicated his desire to be an organ donor on his driver's license. However, when the decision was made to withdraw life support, the patient's mother decided that she did not want him to be an organ donor. The wife then acquiesced and agreed with his mother's decision. Despite the patient's prior wishes and despite his properly executed documentation, the local organ procurement organization did not think that it would be appropriate to enter into a conflict with the family. Therefore, organ donation was declined.

Discussion

In addition to having made his wishes regarding donation of his organs known to his family, the patient had made two legally binding declarations in the form of a properly completed organ donor card and his driver's license designation for organ donation. Thus, he should have been allowed the right of organ donation after his death. However, contextual issues, primarily the family's opinion, were allowed to override the patient's autonomy and prevent donation. These events raise the question of what ethical considerations should guide physicians regarding donation of their patients' organs.

Legal Aspects

In the United States, the Uniform Anatomic Gift Act (UAGA) provides the legal framework for the process of organ donation. (2) This statute grants any mentally competent individual at least 18 years of age the right to designate whether or not he wishes to donate his organs for transplantation after death. When the decedent has expressed such a desire, this wish is to be honored over any familial objections. By 1973, all 50 states had adopted, with only slight variations, some form of the UAGA. (3) A properly signed declaration (such as the back of a driver's license or an organ donor card) is a legal document under the UAGA and is effective to authorize donation in every state. Moreover, the relevant laws specify that consent of the donor's relatives is not needed in such circumstances--the relatives do not have legal authority to undo the donor's wishes. (3)

From a legal point of view, the autonomy of the patient is the most important factor in determining whether organ donation occurs. Legal actions against those who would over-ride a patient's autonomy have occurred. Classic lawsuits (such as those involving Karen Ann Quinlan and Nancy Cruzan) have emphasized the importance of respecting patient autonomy in a wide variety of situations, such as whether a permanently unconscious person lives or dies.

It has been suggested that protocols be established that would clarify patients' wishes regarding donation before death. Under mandated choice, individuals would be required to state their preferences regarding organ donation when they renew their driver's license or perform some other task mandated by the state. Mandated choice has been endorsed by the Council on Ethical and Judicial Affairs of the American Medical Association. (4) A step beyond mandated choice is presumed consent (in which the deceased is presumed to be an organ donor unless there exists proof otherwise). At least 13 European countries have been operating under presumed consent for years. Some countries have laws that are relatively aggressive for obtaining organ donation. (5)

Although obviously much more conservative than the laws in effect in European countries, a well-organized legal framework exists for organ donation in the United States. Statutes in each of the 50 states based on the UAGA recognize individual autonomy as the primary factor in determining whether an individual is an organ donor. (3)

Contextual Features

As this case demonstrates, despite well-established legal guidelines, organ donation may be hindered or prevented by contextual issues. Family refusals to donate (even when the patient's wish to be an organ donor was clearly elaborated before death) constitute a major source of lost donations. (6) Each year in the United States, relatives refuse donation of and bury at least 5,000 organs that are medically suitable for transplantation. (7)

A number of factors may influence physicians and/or organ procurement agencies to allow a family's wishes to override a patient's legal right to be a organ donor. The dissonance produced by family refusal and the potential generation of conflict between family and physician (and possibly lawsuits) could obviously affect decision-making by the physician. In some instances, significant controversy and adverse publicity could result if the decedent's family were offended and sought legal recourse, or complained to the local news media. Threats of events of this nature could make those in the medical profession hesitant to defy a family's opinion despite the patient's stated wishes.

It could also be argued that agencies coordinating organ transplantation have a right to decline the organs offered by the deceased patient, and this issue could contribute to the refusal of a potential donation. If agency personnel believed that the negative impact of accepting an organ under controversial circumstances would outweigh the value of the organ itself, they could logically decide to decline the offer. For example, accepting an organ surrounded by controversy and unfavorable publicity might decrease the possibility of future donations. Consideration of public opinion and similar factors might create an ethical dilemma for the agency and put them in a position of weighing the short-term benefits of accepting donation from a single donor versus the long-term damages caused by adverse repercussions related to the donation.

Conflict of Legal and Contextual Features

It is apparent that conflicts exist between the established legal statutes for organ donation and a number of contextual features that may arise. These are often diametrically opposed to each other. The deceased person may be an eligible organ donor without question from a legal point of view, but contextual features may strongly resist the individual becoming an organ donor. Decisions regarding resolution of this conflict are often based on the contextual features, especially the opinion of the relatives of the deceased, without regard for the legal status of the decedent. The tendency to follow this trend in the United States is so prevalent that one writer has said, "You could die with an organ donor card in every pocket, and another one pasted on your forehead, and still no one would touch you if your [family] said no ..." (8) When this occurs, a donor of life-saving organs is then no longer a donor. The opposite situation--a potential donor with a legal status opposed to organ donation but with contextual features supporting it--is never an issue.

Conclusion

From a legal point of view and UAGA-based statutes, patient autonomy should ultimately determine whether one becomes an organ donor. The basic premise of the UAGA is clear--that the individual, not the family, should determine the postmortem disposition of the individual's body. (3) The patient's wishes while living should extend after death, regardless of relatives' objections. However, contextual factors may conflict with patient autonomy. It is imperative that these conflicts be resolved to prevent life-saving organs from being lost unnecessarily.

A number of approaches may help prevent or resolve this dilemma. Mandated choice would provide an unequivocal statement of virtually every competent adult's wishes as to what should be done with his or her organs after death. Additional measures to facilitate patient's wishes could include completing all appropriate legal documentation upon initial application for health care or early in the health care process. However, these practices are not yet widely exercised. Adoption at the state level of practices supporting the principles of the local laws based on the UAGA are urgently needed. In the meantime, organ procurement may be facilitated by educating the public about the benefits and procedures of organ donation, and by potential donors clarifying their wishes to their families while living. Potential donors should always be encouraged to clearly express their wishes to their families so that there will be no question in the minds of the family about the deceased individual's intent. A Gallup poll commissioned by the Harvard School of Public Health showed that 93% of all Americans would be willing to donate a family member's organs if he or she had expressed the wish before death. If no such wish had been expressed, only 50% would be willing to do so. Yet, 89% of would-be donors had not discussed their intent with their family or next of kin. (9) These facts are particularly important if one considers that 25% of Americans are reported to carry a signed organ donor card. (7)

In theory, the practices of physicians, hospitals, and agencies involved in organ procurement should conform to the UAGA-based laws of their state. To do otherwise is not only unethical but is, in a sense, a violation of the law. When a deceased individual has left organ donation instructions, transplant teams trample on his rights when they allow contextual features to override legal aspects and also require family consent. This could put many hospitals, organ donation organizations, and physicians at risk. (10) Obviously, the conflict between the decedent's legal rights and a family's opinions poses a difficult dilemma for health care professionals.

Denying organ donation from a person who clearly wished to be an organ donor deprives that person of his right to perform what many consider a truly altruistic act. Autonomy remains an extremely important concept in the treatment of living patients--they have a right to decide what happens to their bodies during life. Should this right not extend to what happens to their bodies after they die, as does the right to determine disposition of their property after death (through wills)?

Accepted April 6, 2004.

References

1. Jonsen AR, Siegler M, Winslade WJ. Clinical Ethics: A Practical Approach to Ethical Decisions in Clinical Medicine. 5th ed. New York, McGraw Hill, 2002.

2. Spital A. Ethical and policy issues in altruistic living and cadaveric organ donation. Clin Transplant 1997;11:77-87.

3. Developments: medical technology and the law. Harv Law Rev 1990;103:1614-1643.

4. Spital A. Mandated choice for organ donation: time to give it a try. Ann Intern Med 1996;125:66-69.

5. Price D. Legal and Ethical Aspects of Organ Transplantation. Cambridge, Cambridge University Press, 2000, pp 92-94.

6. Dennis JM, Hanson P, Hodge EE, et al. An evaluation of the ethics of presumed consent and a proposal based on required consent. UNOS Update 1994;2:16-21.

7. Evans RW, Orians CE, Ascher NL. The potential supply of organ donors: an assessment of the efficiency of organ procurement efforts in the United States. JAMA 1992;267:239-246.

8. Owen D. Rest in pieces, Harper's 1983 (June), p 74.

9. Painter K. Family key to organ donations. USA Today March 31, 1993, p B1.

10. Jardine DG. Liability issues arising out of hospitals' and organ procurement organizations rejection of valid anatomical gifts: the truth and consequences. Wisc Law Rev 1990 (Nov/Dec), pp 1655-1694.

RELATED ARTICLE: Key Points

* The Uniform Anatomical Gift Act provides the legal framework for specification of one's wish to be an organ donor after death.

* Contextual features, such as the opinion of the family, may conflict with the decedent's wishes and legal rights. This may pose difficult dilemmas for organ procurement organizations, physicians, and hospitals.

* Based on the Uniform Anatomical Gift Act, patient autonomy should be the most important factor in decisions regarding postmortem organ donation.

Roy R. Reeves, DO, PHD, William S. Agin, JD, Ethyl S. Rose, MD, Marti D. Reynolds, MDIV, Anthony R. Beazley, MDIV, BCC, and Sharon P. Douglas, MD

From the Departments of Education and Ethics, Psychiatry, and the Chaplain Service, G.V. (Sonny) Montgomery VA Medical Center, the Department of Psychiatry, University of Mississippi School of Medicine, and the Madison County Mississippi Court, Jackson, MS.

Reprint requests to Dr. Roy R. Reeves, Chief of Psychiatry (116A), VA Medical Center, 1500 East Woodrow Wilson Drive, Jackson, MS 39216. Email: [e-mail]