Ethical concerns for organ transplant coordinators
Levi, Benjamin H
A great deal has been written about the ethics of organ transplantation. Much of it has (appropriately) concerned issues of policy-for example, how best to allocate scarce organs, avoid conflicts of interest, and increase the pool of potential donors. Although these discussions are important, they often fail to provide much context for applying relevant ethical precepts to the day-to-day activities of those directly involved in organ procurement. The purpose of this paper is to provide such a context by reviewing several key conceptual issues, drawing attention to various ethical and procedural distinctions, and offering some practical recommendations for addressing these issues with physicians and other healthcare providers. (Progress in Transplantation. 2003;13:242-248)
Of approximately 24000 organs that are donated each year in the United States, only about 25% come from living donors.1 The rest of the donated organs are from individuals who have died, most deaths determined according to neurological criteria. As such, the current pool of potential organ donors primarily comprises brain-dead patients who are receiving mechanical ventilation.
If widely accepted, non-heart-beating donation could change the donor situation radically. For then, resources would allow a much wider range of patients receiving life-sustaining medical therapy to become readily eligible for organ donation, notably comatose patients who have sustained a nonsurvivable injury but are not “brain dead.” Recent reports by the Institute of Medicine2,3 review major ethical, social, medical, and policy issues concerning such a shift. But after a decade of promotion, less than 3% of organ donors in the United States are non-heart-beating donors,1 and there is little reason to expect much change in the foreseeable future.
Given this state of affairs, the primary pool of organ donors in the United States is made up of patients who are either rapidly approaching death or have recently been declared brain dead. Therefore, transplant coordinators have a narrow window of opportunity to discuss organ donation with physicians and families-a window that is bounded, on the one side, by continued therapeutic attempts to reverse or stabilize serious medical problems, and, on the other side, by death as determined by heart-lung criteria. To complicate matters, coordinators often find a number of barriers that further impede efforts at successful organ procurement. These include physicians’ reluctance to halt medical treatment, conflict over who should initiate discussions about organ donation, reluctance to contact transplant coordinators and initiate early discussions, and failure of the medical profession and families to distinguish between what is possible and what is reasonable. The purpose of this article is to help transplant coordinators address and overcome these barriers by accomplishing 2 aims: (1) to help clarify key ethical and conceptual issues that affect organ procurement (the meaning and application of futility, characteristics of reasonable treatment, principles for end-of-life medical decision making, the nature of death, and distinctions between withholding and withdrawing treatment); and (2) to introduce practical strategies that may help prevent and overcome ethical conflicts.
At some time in the care of seriously ill patients, it is common for someone to assert that the time has come to stop treatment because continuing would be “futile.” Clarifying the meaning of this term is important for transplant coordinators, because its misapplication can impede discussions about organ donation-for example, by leading to premature termination of organ-sustaining treatment. “Futility” is a concept derived from the Latin word for sieve, futilis. Its meaning and task-dependent nature can be illustrated by reference to the properties of a sieve: though ideal for sifting grain, it is futile for transporting water. In the context of medical care, the allure of calling a treatment futile is the seemingly objective nature of the claim. For it is easier to say that a treatment is futile than to actually generate persuasive arguments about the worth of investing scarce resources for another few weeks of life-much less, to engage in a debate about the values that underlie such allocations. Despite this allure, claims of futility are in point of fact often far from objective judgments, but instead emphatic expressions of someone’s beliefs about what is worthwhile and what is not.4
To avoid misapplying the concept of futility, it is necessary to first be clear on the end in mind; that is, in terms of what goal is futility being invoked? If agreement can be reached on what the goal is (or ought to be), then whether a given medical course of action is futile becomes an empirical question-and for such determinations the medical profession has special expertise. But to the extent that there is disagreement about what ought to be the goal(s) of continued treatment, then what is at issue involves a difference in individuals’ values and/or priorities. In such a dispute, medical professionals have no special knowledge and therefore no legitimate authority to determine what constitutes the most appropriate goal(s) for a given clinical situation. For transplant coordinators, understanding the way futility claims are used and misused can help clarify what is really at issue in a given dispute over the appropriateness of care. Although accurately identifying causative factors in such disagreements does not necessarily solve them, it is an important diagnostic step that can help coordinators move these clinical disputes toward resolution.
Reasonable Versus Possible
At some level, resolution of disputes about when to limit medical treatment involves distinguishing what is possible from what is reasonable. Although almost no one holds the view that every patient should be treated with every available resource until death,5 the culture and pace of modern medicine nevertheless pushes people to think of “limits to care” primarily in terms of the various physical limitations of specific treatment options. Limitations based on competing goals and objectives often go unspoken, and hence unexamined. As such, treatment decisions are seldom discussed in terms of what is reasonable, which in turn depends on a person’s values and priorities (eg, philosophical, political, spiritual, economic). Reframing treatment decisions in terms of what is reasonable requires not only an understanding of others’ beliefs and concerns, but a willingness to work toward a shared understanding of what is right, what is fair, and what is good.
Consider for example whether it is appropriate to continue supporting a near-brain-dead patient solely to preserve more options for donation. Often, this discussion centers on questions of right versus wrong, legal versus illegal. Framing the issue in terms of what is reasonable not only pushes those involved to articulate their actual concerns, it facilitates a dialogue about the relative merits of the issues at hand. These might include logistic concerns, such as bed availability or staffing; prognostic concerns, such as whether the patient will survive to donation or whether his or her organs are likely to be usable; financial concerns, such as whether continued treatment will result in lost revenue for the hospital; professional concerns, such as whether the patient’s healthcare providers consider continued care good use of their time. Reframing the conversation in terms of what is reasonable often reveals that conflict over what is ethically appropriate has more to do with resolvable, concrete issues than it does with intractable value differences. That said, when medical personnel refuse to institute or to withdraw certain treatments, their decision can effectively foreclose the possibility of organ donation. As such, it may need to be pointed out that decisions about donation belong not to physicians and nurses, but to patients and families.
In an attempt to ensure that decisions regarding medical care are consistent with patients’ (rather than someone else’s) values and wishes, patients are often encouraged to create advance directives. In its most general sense, an advance directive is any formal communication that, in the event that a person becomes incapacitated, conveys his or her wishes regarding medical decisions that may need to be made on their behalf. Advance directives do not have to be notarized, can say anything one wants, and can take many forms, including written documents, audio- or even video-recordings. A living will is a particular kind of advance directive that is only valid if it follows state-specific guidelines, and in most states, only applies in the event a patient either has a terminal condition and death is imminent, or is in a permanent vegetative state. Although most states’ legislation grants immunity to any healthcare provider who acts in accordance with a “qualified” living will, some explicitly exclude from their living will provisions any patient who is pregnant as well as patients who have never possessed decision-making capacity (ie, children and most mentally retarded individuals).
Despite their appeal, however, written advance directives have several important limitations, including: (1) they are static documents that cannot adapt to new information or changes in circumstance; (2) they are necessarily incomplete and are frequently too vague to provide substantive advice about what decision to make in a specific circumstance; (3) they are often not available when needed; (4) even when present they can be easily overridden by family and/or physicians (just as occurs with preferences noted on drivers’ licenses and donor cards); and (5) it is typically unclear whether patients’ advance directives were based on a clear understanding of the medical procedures and circumstances at issue.6-8 However, the process of creating advance directives has important benefits. It promotes thinking through important issues and articulating the values and priorities a person wants to govern decision making should he or she ever become incapacitated. Additionally, advance directives provide concrete evidence of a patient’s wishes (sometimes needed to validate the choices made on a patient’s behalf). So, despite the limitations of advance directives, it remains unfortunate that only about 15% of American adults have a living will or other written document stating their wishes.9
The ethical principle underlying advance directives is respect for personal autonomy. As such, it is widely acknowledged in our society that, as expressions of a person’s values and interests, medical decisions “belong” to patients so long as those individuals have the capacity to act autonomously.10 It is neither the place of physicians nor others to usurp that power-except in extraordinary circumstances. When a patient loses decision-making capacity (temporarily or permanently), respect for autonomy remains the basis for decision making, though now framed in terms of our conjectures of what he or she would have wanted. This substituted judgment is based on knowledge about the patient’s beliefs and values, often articulated by relatives or close friends.11
Once a patient cannot communicate, someone must represent his or her wishes. Typically, this surrogate decision maker is the patient’s next of kin. But of course the next of kin may not be the best person to serve in this role-a fact acknowledged in some states by the absence of a predefined hierarchy for who will make decisions on behalf of an incapacitated patient. When conflicts arise over who should serve as surrogate, resolution sometimes requires turning to the courts. To avoid such conflicts, a person can legally designate someone (beforehand) as his or her health-care power of attorney (HCPA). Like living wills and other forms of advance directives, a patient’s HCPA has no legal standing until the patient loses decision-making capacity-and even then a HCPA’s power only applies to healthcare decisions. But having a conscientious, reflective person who knows one well serve as HCPA has several distinct advantages over other forms of advance directives: he or she can learn additional information if need be, exercise judgment, respond to unforeseen circumstances, as well as stand up to pressures that threaten to undermine patients’ wishes. Additionally, establishing a HCPA is less work than constructing a substantive written advance directive. So, to the extent that the medical profession hopes to best promote having patients’ wishes carried out, it should encourage people to legally designate someone their HCPA and let that person know their wishes. Of particular relevance to the project of securing organ donation, knowledge of a patient’s wishes regarding organ donation has been identified as one of the strongest influences on the decisions surrogates make.12-14
In the event that it cannot be discerned what the patient’s wishes would be, the basis for decision-making shifts from respecting the patient’s autonomous wishes to acting in a way that one thinks will be in his or her best interests. This best interest standard is a marked departure from the principle of respect for autonomy that underlies the substituted judgment standard, insofar as autonomous choice is not always synonymous with best interests-a fact readily enough seen in the choices some people make regarding their eating habits, leisure activities, and even their romantic partners.
In the context of end-of-life decision making, the difference between knowing what a patient would have wanted versus what is in his or her best interest is particularly relevant, because as many as 75% of patients lack decision-making capacity when decisions about stopping treatment must be made.15 When such incapacity is combined with lack of information about what a patient would have wanted, windows of opportunity for transplant coordinators often narrow even further. For in the absence of clearly communicated advance directives from patients, and uncertainty about what a patient would have wanted, medicine’s all-or-nothing tendency tends to predominate. Aggressive treatment is pursued until all hope is gone, whereupon everything is stopped, all medical intervention withdrawn, thereby foreclosing opportunities to pursue organ transplantation.
It was noted previously that most organs come from patients who have already been declared dead. One might think that death is a designation that is as uncontroversial as it is immediate. But while it is indisputable that death is a nonreversible state distinct from life, it is a state of (non)being that is socially and legally defined. Within even the narrow confines of non-heart-beating donor protocols disagreement exists over what counts as death.16 Moreover, because different organs and cells in the body die at different rates, which of the body’s functions are so basic that their absence signifies an individual’s death is inherently a value-based judgment.
Traditionally, the broad requirements of prolonged unresponsiveness and pervasive dysfunction that define death were satisfied once a person’s heart and lungs had stopped. With the advent of cardiopulmonary resuscitation, however-and, later, mechanical ventilation and heart-lung bypass devices-these heart-lung criteria for determining death came to be seen as needing supplementation. In fact, in rare cases, biological functioning persisted even after patients’ brains had liquefied.17 Further driving this rethinking of death was the growing success of organ transplantation and the need for more donors.18 As such, the first consensus statement regarding neurological criteria for death was codified in 1968, with death defined as the cessation of all brainstem and higher cerebral functions, and total dependence on life support devices.19 In the intervening years, these criteria for brain death have been widely adopted within medicine and law throughout the Western hemisphere. However, not everyone accepts this definition of death, and various religious traditions have expressed great reservation about “replacing whole person death criteria with whole brain death criteria.”20
Beyond any psychological difficulty in calling someone dead whose heart and lungs continue to function, the current notion of brain death also poses certain conceptual problems.21 For example, in order to employ neurological criteria for death, a patient must have a normal body temperature; and yet temperature regulation itself requires organized brainstem activity that is supposed to be absent in brain death. For such reasons, various authors have provocatively suggested either a return to traditional (heart-lung) criteria, or adoption of criteria for death that are based exclusively on the loss of higher brain functions (which are responsible for consciousness and related qualities often thought of as integral to what makes someone a person).22 The point is that although the law identifies the moment of death as a discrete event, medically and conceptually, death is a continuing process that has no discrete endpoint.
Withholding and Withdrawing Treatment
Also complicating end-of-life treatment decisions are people’s reactions and assumptions regarding withdrawing life-sustaining medical treatment. There is wide legal and ethical consensus that there are no significant distinctions between withholding and withdrawing life-sustaining medical treatment.23-28 Still, many people are more resistant to stopping an intervention than starting it. For physicians, this is sometimes due to their regarding withdrawal of treatment as an admission of failure. For families, reluctance to withdraw treatment can stem from many sources, among them suspicion that ulterior motives are somehow driving the decision to switch from doing everything to doing nothing.
Such suspicions can be particularly pronounced when organ donation is at stake, and it underscores why many non-heart-beating donor protocols have attached great importance to the separation of medical teams caring for non-brain-dead patients (who are soon to be organ donors) from the medical/surgical teams whose job it is to procure organs from these patients once they have been declared dead. It has also been argued that, beyond its practical import, separating “care teams” from “transplant teams” has symbolic force against any shift in perspective that might promote the perception of certain human beings simply as commodities to be used.
A more general (and certainly more long-standing) concern with withdrawing life-sustaining medical treatment is that it somehow constitutes “playing God.” There are several dimensions to this accusation, not the least of which is the perception that some physicians are arrogant and domineering. Typically, however, the further implication is that to withdraw treatment is morally wrong-not only because the decision brings about an unnatural death, but also because it usurps a decision-making authority that rightly belongs only to God.29 The problem with the “playing God” metaphor, however, is that it loads the dice on the side of continued medical intervention, and provides no justification for doing so. In point of fact, few among us can claim direct knowledge of God’s intentions; medical intervention is itself “unnatural”; and, if God is indeed omnipotent, it surely is presumptuous to think that human medical actions could in any way trump those of God. As such, the accusation that withdrawing treatment is “playing God” serves merely to stop discussion by advancing a pro-treatment bias under the guise of “God’s will,” and to accuse those who disagree with trying to make a decision that (allegedly) is not theirs to decide.
Practical Issues for Coordinators
How then, might a transplant coordinator respond when confronted with ethical conflicts such as those described above? There are numerous published practical guidelines for resolving ethical conflicts, several of which may be of particular interest to transplant coordinators.30-34 In general, however, addressing the following 4 issues can help transplant coordinators navigate and constructively resolve ethical disputes concerned with end-of-life care.
Identify the Nature of Disputes
In the majority of cases involving end-of-life decision making, the goal(s) of treatment are clear, easy to articulate, and readily agreed upon. But sometimes there is disagreement, and in such instances, identifying exactly what is at issue in the dispute becomes crucial. Commonly, the conflict will be psychological rather than professional or moral in nature. That is, rather than concern that a given treatment decision is medically incorrect, professionally unjustified, or morally wrong, the dispute arises when people find certain decisions “psychologically difficult.” A classic example of this is the greater difficulty that physicians and families often have stopping medical treatment as opposed to not starting it in the first place. Transplant coordinators can acknowledge this dynamic in a professional and empathic manner, thereby helping not only to reframe the dispute over treatment, but also to provide the support necessary to resolve many of these impasses. Relatedly, tension sometimes will be eased simply by clarifying the roles various parties play. For example, as advocates both for patients on the transplant waiting list and donors/donor families, transplant coordinators often have competing responsibilities. Explaining the nature of this dual advocacy role not only helps clarify expectations, but in its candor also conveys respect in a way that others may be likely to reciprocate.
Clarify Professional Authority and Responsibility
Openly discussing issues of boundaries and authority can often preempt healthcare providers’ defensive responses, reactions that at some level seek to preserve power. So, for example, when encountering a physician who is reluctant to “allow” a patient to become eligible for organ donation, a coordinator might openly acknowledge that while it is often physicians who determine which patients are referred for potential donation, patients and families both expect and are entitled to be informed of all their options. By further identifying the advisory responsibilities inherent in his or her role, a transplant coordinator makes it possible to address the need for disclosure without appearing to contest the physician’s professional authority. If the coordinator can thus engage the physician, he or she can then move to more forcefully frame the discussion in terms of accepted professional standards (eg, ensuring informed consent), ethical and legal consensus regarding decision making for incapacitated patients, as well as norms for organ donor candidacy. This kind of systematic clarification may be particularly relevant when a physician has claimed that further treatment is futile and hence unreasonable. In such cases, one might first elicit from the physician the goal in terms of which further treatment is (allegedly) futile; then on to distinctions between what is possible versus what is reasonable; then to discussions about expectations and norms. In the high stakes environment of end-of-life medical care, such forms of diplomacy are strategic insofar as they acknowledge physicians’ political power while also leveraging their sense of fiduciary responsibility.
A coordinator might further help a physician recognize that just as families often assume the unnecessary burden of deciding the best course of action (when they need only represent the patient’s wishes), physicians may similarly misjudge their responsibilities. For example, physicians frequently assume that they need to find out from patients and families at what point support should be withdrawn, or perhaps what should be done in the event of brain death-when all a physician initially needs to identify is whether there is some threshold (of injury/debility) beyond which “aggressive treatment” should not be pursued. A coordinator might explain this, and help the physician understand that what such a threshold does is expose a natural separation between medical care aimed to benefit the patient versus treatment efforts that are aimed to benefit others (eg, those awaiting transplants). Once a patient’s condition exceeds this threshold, further treatment decisions seldom have any urgency, so discussion about life-sustaining medical treatment, brain death, and organ donation can be pursued in an unhurried and deliberate manner. To the extent a physician can be helped to understand the meaning and application of such a threshold, he or she will have a clearer appreciation of the legitimate bounds of his or her professional authority and responsibility.
Acknowledge Institutional Issues
Sometimes, what is needed to work more effectively with a given physician (or other healthcare provider) involves developing better institutional supports. Policies that protect individuals from perceived liability can go a long way in overcoming their fears or sense of professional vulnerability. For example, when nonphysicians in a hospital voice concern about possible reprisal for raising the issue of transplantation, the most effective course of action might be to ensure that hospital policy makes clear that patients and families need to be informed when organ donation is an option. There may in fact be any number of transplantation-related policies that an institution needs help articulating, and for which coordinators might serve as excellent resources. Alternatively, better mechanisms to facilitate critical feedback about transplantation discussions may be needed. So for example, creating a forum that enabled families to register their experiences (good and bad) might lead to considerable growth in the behavior of a particular institution and its healthcare providers. Physicians and nurses seldom learn what would have helped a given family decide to approve organ donation, or what messages a family in fact perceived (from physicians, nurses, administrators). Therefore, involvement with organ transplantation might be reinforced by arranging for medical personnel to get personal feedback from organ recipients whose transplantations they facilitated.
Clearly, the more an institution embraces organ transplantation as its responsibility, the more it is likely to take on the related educational and policy issues surrounding transplantation. What can be done to facilitate this, however, depends on the ability of transplant coordinators to establish relationships, accurately discern points of controversy (conceptual, pragmatic, and psychological), and help develop effective responses to these concerns.
Because it takes more than knowledge to be effective, it is important for transplant coordinators to develop strategies for effectively conveying complex concepts. For example, suppose a family is having difficulty understanding and accepting the concept of brain death.35 Rather than argue about legal definitions or neuroanatomical criteria for death, the coordinator might explain that brain death means that the patient’s brain no longer has the capacity to control functions even as basic as breathing; that once brain dead, a patient will never regain consciousness or in any way interact with the environment; that such patients are beyond the point where any therapy can be of benefit; and that from a legal standpoint they are considered to be dead.
Similarly, a coordinator might need to provide families a larger context for understanding the compatibility or incompatibility of various treatment options. For example, many families will not be aware that a do-not-resuscitate order has the potential to conflict with the medical management required for organ donation-such as when a patient’s heart stops before the transplant team has arrived. By contrast, healthcare providers may not see the point in aggressively treating a patient with a nonsurvivable neurological injury. Providing a “big picture” to orient families or healthcare providers often helps them come to realizations they never before appreciated. For example, an advance directive that emphatically expressed a patient’s wish not to be resuscitated in the event of a nonsurvivable neurological injury might also express the desire to serve as an organ donor. Taking a “big-picture” approach to interpreting such an advance directive could help both family and caregivers appreciate that the patient’s autonomy might be best respected by performing resuscitation until the transplant team arrived.
It is also useful to develop ways of asking questions that do not curtail discussion by setting people up to either pass or fail (such as, Do you understand?), but instead expand conversation (eg, Is there anything you’d like more information about?) and explore areas of misunderstanding (eg, Is there anything I’ve said that doesn’t make sense to you?). The value of a good question is in its ability to get beyond and underneath the position someone is taking: “What makes you most uncomfortable about…?” or “What would you need to know in order to accept/believe that…?” Questions can convey respect; they can function as power plays; they can elicit constructive dialogue, or merely serve to stifle others’ responses. In short, if constructed thoughtfully, questions serve as opportunities not only for increasing understanding, but for establishing relationships.
A common mistake that often inhibits people from asking good questions is the assumption that we know the intentions and motivations underlying others’ behavior. Take the example of a physician who is unwilling to openly acknowledge that a patient is dead by neurological criteria. It may be that the physician just likes to play by his or her own rules; on the other hand, many physicians are simply unfamiliar with current legal and professional standards. Some physicians close down various treatment options in an attempt to make things seem less complex, and thereby easier, for the patient’s family. Alternatively, a physician’s refusal to “concede to death” may also be a covert bid to make up for the (ever-present) possibility that he or she “missed” something before. In point of fact, the rationale underlying another person’s behavior can be far from obvious.
The point here is not that one must delve into others’ psyches or engage in psychotherapy to be a good transplant coordinator. But learning about another person’s concerns (professional, legal, ethical, and psychological) can be helpful in one’s efforts-and may in fact be necessary-to get a person to move beyond his or her lack of knowledge, fears, and any mistaken beliefs he or she harbors. The appropriate response to a given barrier necessarily will depend on the nature of the barrier, as well as what is at stake. But as a rule, the more aware, nonconfrontational, and nonjudgmental one can be in dealing with another person’s concerns, the more effective one is likely to be.36,37
Transplant coordinators need to appreciate the nature and implications of a wide range of ethical concerns regarding end-of-life decision making. Moreover, to be effective in their work they must cultivate a broad set of skills for employing these various precepts and applying this knowledge base. Toward these ends, it is hoped that this overview has been helpful. In closing, it is useful to remember that there are always important lessons that can be learned from one’s experiences. Each and every encounter is an opportunity to explore issues of communication and to develop oneself professionally and personally. As John Dewey38 once observed, resistance is not so much a thing to be beaten down as it is an opportunity for reflection.
The authors wish to thank the anonymous reviewers for their comments on earlier drafts of this paper.
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Benjamin H. Levi, MD, PhD, Michael J. Green, MD, MS
Penn State Milton S. Hershey Medical Center, Hershey, Pa
Copyright North American Transplant Coordinators Organization Dec 2003
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