Surrogate Consent for Living Related Organ Donation

An increasing number of patients receive transplants of organs procured from living donors.¹ Organ donors provide the "gift of life" because of a desire to help another individual. Usually the organ recipient is a close relative because affection and a desire for the well-being of the ill individual needing the transplant are also substantial incentives for donation. A recent consensus statement on the live organ donor noted that "the person who gives consent to be a live organ donor should be competent, willing to donate, free from coercion, . . . " and fully informed.² This consensus statement does not explicitly address the potential for surrogates to consent to organ recovery from an incompetent adult, although such clinical circumstances present themselves occasionally.³ Some actively oppose surrogate consent, presumably because of anticipated negative effects on public perceptions about organ donation.^{4 - 5}

We present a case in which surrogate decision making was deemed ethically acceptable to allow a living related kidney donation. The primary rationale for allowing organ donation was that it was considered consistent with the goals of the incompetent patient. A secondary rationale was that the organ donation procedure was believed to permit the surrogate (patient's family) to derive some meaning from a tragic situation.

The patient was a 20-year-old white male firefighter who experienced a sudden, massive intracerebral hemorrhage. Prior to the event, the patient was believed to be in excellent health and physical condition. He took no medication and had no known medical problems. Despite aggressive treatment in a nearby emergency department and a neurosurgical decompression procedure, the patient sustained massive brain trauma because of exceedingly high intracerebral pressures. Three days after the event, the patient—deeply comatose and dependent on mechanical ventilation—was transferred to a quaternary care facility for further evaluation. Magnetic resonance imaging revealed massive intracerebral hemorrhage with midline shift. The patient's condition did not improve. Three weeks after the initial event, evoked potential studies demonstrated no cortical brain activity; however, the patient retained rudimentary brainstem function. A neurologic trauma specialist judged the patient's prognosis to be devoid of any possibility of significant neurologic recovery. A second neurologist confirmed this prognosis. These consultants thought that it was very likely the patient would die, albeit not immediately, if mechanical ventilation was discontinued.

Physicians discussed the patient's prognosis with his family. The immediate family, including the patient's parents and his older sister, conferred among themselves and with their extended family. There was uniform agreement that the patient would not have wanted to remain alive in a permanent coma. Thus, his family decided to withdraw the mechanical ventilator, anticipating death. The family expressed the wish that comfort-oriented care be instituted because this would be most in keeping with the patient's values.

The family raised the possibility of donating the patient's organs and donation was discussed with the local organ procurement organization. The patient did not meet brain death criteria, and because he was not expected to die immediately after extubation, he was not deemed to be a non–heart-beating candidate for organ donation. While the donation of tissue was possible, the family was informed that organ donation was not. The family then raised the possibility that the patient could donate a kidney prior to the withdrawal of ventilatory support. The potential recipient was a first cousin who was being evaluated for renal transplantation in another state. After it was determined that the patient was an acceptable match, the family asked that the gift of the organ be made prior to withdrawing care so that some good might be derived from this young man's tragic death.

Because of the unprecedented nature of the request, the hospital ethics committee was consulted. The family and health care providers met with the ethics committee to discuss whether a decision by surrogates might be acceptable for a living related kidney donation. After reviewing the clinical situation, the ethics committee asked the parents to speak about their son and why they thought that the donation should be performed. They explained that their son had dedicated his life to helping others. They discussed how he had trained diligently to become a public servant who voluntarily entered dangerous situations to help save the lives of people he did not even know. They described him as courageous and caring. They had no doubt that he would want to donate organs to help others; they expressed disappointment that his organs could not benefit others because of his peculiar clinical situation. When members of the ethics committee later queried other family members and friends, these views were universally endorsed. The parents and other family members believed, based on their knowledge of the patient, that if there were any way for him to donate a kidney to his cousin, he would certainly have wanted to do so.

On the other hand, the parents acknowledged that their son had never completed an organ donor card and that they had never discussed the topic with him. They queried friends and squadron members and none had heard him discuss the topic. The patient had no advance directive and had not discussed any end-of-life issues with his parents or others of whom they were aware. However, the parents were certain that he would not want to be kept alive in a permanent coma. They stated that he would not value life under these circumstances and that he would not want to be a burden on others or on society. Therefore, his parents concluded that life-sustaining care should be withdrawn and their son should be allowed to die. They had discussed this with their daughter and with the extended family, all of whom were in agreement. However, they thought that care should not be withdrawn until their son had a chance to provide a kidney to his cousin. They also described agreement on this point among family members.

The ethics committee asked about the relationship between the patient, his family, and the cousin who might receive the donated kidney. The potential recipient, a maternal cousin, was dialysis-dependent because of advanced diabetic nephropathy. Although she and the patient were first cousins, they had met only a few times because they lived far from each other. The hospital ethics committee, which includes mental health professionals, social workers, and a sociologist, asked the parents pointed questions about collusion or incentives to donate their son's kidney. The parents indicated that they had received no payment, that there was no coercion, and that the idea had been entirely their own. The committee pursued potential subservient relationships among family members and potential conflicts of commitment. The family, apparently unencumbered by external pressures, viewed the donation as an opportunity for the patient to perform one last act of generosity.

The ethics committee discussed with the parents potential adverse scenarios in an attempt to procure a kidney. For example, what if their son became unstable during the surgical procedure? They replied that the kidney should be recovered, if possible, but they recognized (but did not expect) that the surgical procedure could have untoward effects on their son. Consideration was given to the fact that the patient might die sooner if the procedure were performed and might die in the operating room rather than in a bed surrounded by loved ones. There was discussion about whether organ removal violated due respect for the body of a vulnerable patient. The family pondered whether organ donation diminished the patient during his final days. They concluded that the procedure would serve to exalt their dying loved one.

Members of the committee and the health care team advanced concerns about the effect of the procedure on the physicians and nurses should the organ removal procedure lead to complications causing the patient's death. The family agreed to pursue the procedure only if the clinicians were comfortable with the range of potential outcomes, but the family viewed an untoward event deriving from the organ removal as part of the risk calculation in the overall decision. Finally, the ethics committee pointed out that the family might come under media scrutiny for permitting a living related donation from their critically ill son. The parents believed they were doing the right thing and that even the prospect of negative publicity would not deter them from their proposed course of action.

Surrogate decision makers are expected to be guided by the patient's wishes, to the extent these wishes are known.⁶ Under optimal circumstances—which almost never occur—surrogates are able to describe precisely what a patient would want done in a particular clinical situation. Far more often, surrogates are expected to use a patient's values in rendering the decision that is presumed to be the one the patient would make.⁷ In the case presented, the parents indicated that they were certain of the decision their son would make; this decision was consistent with the manner in which he lived.

However, surrogate decisions are nearly always made for the benefit of the patient. The decision to donate an organ cannot be construed as benefiting this patient because he will never regain consciousness to realize that he provided the gift of an organ. Thus, alternative ethical reasoning is needed to justify performing the organ donation based on surrogate consent.

There are several reasons why a surrogate decision for organ donation might be ethically acceptable. First, a decision that approximates what the patient would want honors the patient's autonomy. While surrogates are notoriously inaccurate at replicating patients' preferences,⁸ in this case the parents and sister were quite certain that they knew precisely what the patient would desire. Furthermore, there was deep and broad agreement supporting the family's interpretation of what the patient would want across the extended family and large number of friends and coworkers interviewed by the ethics committee members. Second, facilitating the surrogates' altruistic motivation to donate the organ may respect the patient's values. Furthermore, by donating an organ the patient is doing something good for his community, which also was consistent with this patient's prior behavior. One legal analysis of organ donation decisions argues that surrogates making decisions regarding organ donation "have the right to take into account other factors, such as the demands of morality and the best interests of the family as a whole."⁹ In addition, the act likely would free up a cadaveric kidney for another individual waiting for an organ (assuming that no other living related donor was found). Finally, and probably least important from an ethical perspective, the donation permits the surrogates to derive some meaning from a tragic situation. For all these reasons, and fully recognizing that the medical procedure posed potential harms and would not benefit the patient, the ethics committee concluded that it was ethical for a surrogate decision to direct a live organ donation in this case.

The ethical conundrum posed by this case is whether a substituted judgment should ever be allowed to direct a course of action that will not benefit the patient. Moreover, respect for the vulnerable, incapacitated patient requires that the surrogate decision protect the dignity of the patient and ensure actions consonant with the patient's wishes. The strength of the substituted judgment in realizing the patient's autonomous wish must be balanced against the burdens and potential harms of the procedure. Thus, the test is whether what is known of the patient's wishes is so forceful and the burden (which by definition in this case exceeds any potential benefit) small enough that the principle of autonomy—even expressed via a substituted judgment—is compelling.

How small must the burden be? In that there is no potential tangible benefit to the patient, actual burdens in terms of clinical outcome and suffering must be close to nil. Thus, the procedure must be expected to cause no more than minimal discomfort and the procedure should not meaningfully change the potential donor's clinical course. This comatose patient had little prospect of discomfort from the procedure, yet it was imperative that attention be paid to ensure that there was no pain or suffering. In that the precise course to death cannot be judged with certainty, maintaining minimal burdens translates into not removing organs that precipitate death (eg, both kidneys) and not performing procedures that hold a significant likelihood of causing clinical demise (eg, removing the pancreas). Although in the case presented the plan was to withdraw life support and permit death, removing more than a single kidney carried a nontrivial likelihood of precipitating an earlier death and was judged by the involved clinicians to present more than a minimal burden.

We are unaware of a legal precedent applicable to this case, but there is case law upholding the parental decision for a minor to donate an organ using the substituted judgment standard.^{9 - 10} However, this authority has not been supported in all cases.¹¹ The Consensus Statement on Live Organ Donors enunciated 4 conditions necessary for live organ donation from a minor to be ethically acceptable: both the potential donor and recipient are highly likely to benefit, the risk to the donor is extremely low, other organ availability is unlikely, and the minor freely agrees without coercion.² A recent investigation suggests that these guidelines are not always followed.¹²

While parents (or other surrogates) can serve as the de facto decision makers for both children and permanently comatose individuals, there are important differences between parents making decisions for their minor children and surrogate decision making for patients who will not regain capacity. In California, parents are designated by statute to make decisions for their children, while surrogates (such as the parents in the case presented) act in this role supported by case law. The child will likely grow to be able to appreciate the fact that the gift has been given, with the associated ramifications, whereas no psychological benefits will accrue to the comatose adult who will not awaken. However, the comatose adult, unlike the child, has a history of life choices reflecting priorities and values that can help inform surrogates' decisions. While under specific stringent circumstances providing the gift of an organ may be considered ethically appropriate, whether the courts would authorize such a procedure remains to be seen.

Even if surrogate consent for living organ donation is ethical, is it good public policy? In the case presented, the decision to withdraw care was made prior to the decision to donate the kidney. In addition, the physicians and the ethics committee were as certain as possible that the donation was not induced by external gain or coercion. Moreover, the physicians believed that the patient could not perceive pain but were also diligent to ensure that no discomfort would occur because of the donation procedure. However, one might envision a very different circumstance in which a patient in a persistent vegetative state, whose values and goals were not known, might be subjected to a donation procedure that might contribute to the patient's death to benefit a surrogate decision maker. While the organ donation may have been ethically permissible in this case, a set of principles to guide surrogate decision making for organ transplantation should be developed to ensure that such procedures serve beneficial purposes and are not abusive. Such principles should mirror those that guide informed consent for living donation from patients with decision-making capacity. Our committees propose that these principles include the following:

These principles are essential to ensure that surrogate consent for living organ donation does not harm patients. Thousands of individuals who live permanently in seriously compromised health states, most in long-term care facilities, might be at risk of harm if organ procurement procedures were to take place without strict attention to preferences, coercion, clinical implications, and universal provider agreement. Absent required review by an independent body, considerable pressure might be exerted by patients awaiting transplantation and their advocates on health care decision makers to permit such compromised patients to donate an organ. One can anticipate a substantial negative impact on physicians and nurses who provide long-term care for these individuals—as well as on the patients themselves—if patients are transferred to hospitals to excise an organ and then sent back to the nursing facility for postacute care.¹³ Such an approach to organ recovery would devalue the lives of affected patients. A mechanism to clearly consider and document the principles underlying surrogate consent for living organ donation must be implemented before the practice is undertaken more broadly.

The impact of the procedure on the public should be critically considered in the development of a policy for surrogate consent for living organ donation. The organ donation community might feel that surrogate decision making for living related organ donation should never be carried out because negative publicity may diminish overall altruism and thus overall availability of organs.⁵ This possible negative impact emphasizes the need for standards of care, review, and transparent reporting. The public must not perceive that patients are kept alive only to have organs procured.¹⁴ Similarly, nursing facilities should not be seen as warehouses for not-yet-donated organs. In the few cases in which the above noted principles are clearly and convincingly met, surrogate consent for living organ donation appears to be ethically permissible.

The ethics committee believed that the living related donation was ethically permissible. All members of the health care team caring for the patient, including the nurses and those on the renal transplant team who would be treating the organ recipient, believed the donation was ethically acceptable. The insurer for the patient agreed to permit continued care during the period of organ recovery. The medical center supported the surrogate consent process and covered additional costs associated with organ procurement. The potential recipient was rapidly evaluated and the living related donation was carried out without complication. Meticulous attention was focused on the donor's potential for discomfort in the postoperative setting. He was determined to have returned to his presurgical clinical status 4 days after surgery, and mechanical ventilation was withdrawn at that time. The patient died 1 day later. The organ recipient was discharged with a normally functioning kidney 5 days after transplantation.