First-Person Authorization and Family Objections to Organ Donation

Abstract

In the United States, individuals who authorize organ donation through various mechanisms make a legally binding decision that only they may revoke. When a person who has given first-person authorization for organ donation becomes eligible to donate organs, according to laws across the United States, their next-of-kin should be informed, not asked, about the impending organ procurement. Despite this, sometimes families are asked for permission to proceed with donation, or they express unsolicited objections to donation. Some scholars and activists argue for the importance of honoring first-person authorization and not accepting what are sometimes called “family overrides” or “family vetoes” of donation. We consider two arguments for this view, the respect-for-wishes and the prevent-harm arguments and defend a more nuanced approach to family objections to organ donation in the presence of first-person authorization. We also examine the role of families or legally authorized representatives in making decisions regarding premortem interventions for potential donors who are not yet deceased. We argue that such decisions are about living patients and should be treated like all other clinical decisions that legally authorized representatives make for incapacitated living patients.

I. INTRODUCTION

The number of individuals awaiting potentially life-saving or life-extending organ transplants in the United States drives the desire to maximize the number of organs available for transplantation. Mechanisms to increase access to transplantation include improving methods for obtaining and preserving organs, expanding the pool of eligible donors, reducing the organ discard rate, encouraging individuals and families to authorize organ donation, and passing legislation that includes mechanisms to increase the number of organs donated. The Uniform Anatomical Gift Act, a model statute of which some version is state law in every US state, includes such mechanisms (National Conference of Commissioners on Uniform State Laws Revised Uniform Anatomical Gift Act, 2006). It establishes two pathways to becoming a deceased organ donor. Individuals may give first-person authorization, typically at the department of motor vehicles when obtaining a driver’s license, or through donor registry websites (see sections 4 and 5). In the absence of first-person authorization, next of kin may authorize organ donation (see section 9). Once a person has given first-person authorization for donation—what the Act refers to as giving an anatomical gift—no one but that individual may change that decision (see section 8). First-person authorization is legally binding in this sense, although not always in practice. In its

commentary on the 2006 version, the Uniform Law Commission, which authored the Act, states in part:

Section 8 substantially strengthens the respect due a decision to make an anatomical gift. While the 1987 Act provided that a donor’s anatomical gift was irrevocable (except by the donor), until quite recently it had been a common practice for procurement organizations to seek affirmation of the gift from the donor’s family. This could result in unnecessary delays in the recovery of organs as well as a reversal of a donor’s donation decision. Section 8 intentionally disempowers families from making or revoking anatomical gifts in contravention of a donor’s wishes. Thus, under the strengthened language of this [act], if a donor had made an anatomical gift, there is no reason to seek consent from the donor’s family as they have no right to give it legally (National Conference of Commissioners on Uniform State Laws Revised Uniform Anatomical Gift Act, 2006).

The commentary addresses “consent,” but in 2012, the Organ Procurement and Transplantation Network (OPTN) changed its policies to refer to authorization rather than consent, a difference that is relevant later (OPTN/UNOS, 2014). (The Organ Procurement and Transplantation Network is the national organ matching system that links entities engaged in organ donation and transplantation; the United Network for Organ Sharing, a private not-for-profit organization contracted by the US federal government, operates the network.)

In short, if a person who has given first-person authorization becomes eligible to donate organs, the next of kin should be informed, not asked, about the impending organ procurement. Despite this, sometimes next of kin is asked for permission to proceed with donation, or they express unsolicited objections to donation (Volk and Ubel, 2008a, 2008b; Chon et al., 2014; Weiss et al., 2020; Anthony et al., 2021). While it is not clear how often family objections persist to the point of trying to stop donation, it does occur. A 2014 study of all US organ procurement organizations (OPOs) found the overall rate to be lower than 10% in the case of people who were registered donors (Chon et al., 2014). Rates in Canada appear to be higher (Toews and Caulfield, 2016; Anthony et al., 2021). OPO practices vary, and they may even vary within an OPO depending on the circumstances, though overall approximately 80% of OPOs in the US report that they honor first-person authorization over family objections (Chon et al., 2014). In other words, approximately 80% said that even when families object in the face of first-person authorization, something that happened in fewer than 10% of cases, the OPO proceeds with donation. A recent Canadian study suggests that physicians caring for patients, who could be eligible to donate, may be more inclined than OPO professionals to respect family objections, with over half of respondents indicating that they would not proceed with organ donation in the case of family objections (Weiss et al., 2020). We were unable to find comparable data for the United States. The 2006 Uniform Anatomical Gift Act was meant to eliminate family override of first-person authorization altogether, and some evidence suggests that OPOs today override family objections more often than they did prior to the revisions (Chon et al., 2014). For instance, a 2001 study found that 31% of OPOs accepted family overrides and 48% indicated that family impact was the most important factor in deciding how to proceed when families objected (Wendler and Dickert, 2001).

Next of kin who object to donation despite first-person authorization might have questions or concerns that can be addressed to their satisfaction, leading them to accept the idea of donation. If the objection persists, sometimes the OPO might not pursue donation, and sometimes they might simply override the family, possibly leaving the family angry or hurt. In some cases, however, OPOs may go to court to secure the donation. This was the situation Elijah Smith’s family faced in 2013 when the 21-year-old was hit by a vehicle while riding his bicycle and declared dead using neurological criteria (Nash and Thiele, 2016). Mr. Smith had agreed to be an organ donor when he obtained his driver’s license. When the OPO communicated to his family that his organs would be procured for donation, the family objected, telling the medical center that Elijah’s consent to donation was not valid because he did not understand the decision he was making. When the medical center deferred to the family override and opposed donation, the OPO, Lifeline of Ohio, went to court seeking permission to procure the organs (Lifeline of Ohio Organ Procurement Inc. v. OhioHealth Corp et al., 2013). The then-chief clinical executive of Lifeline of Ohio argued that the OPO was “obligated and responsible for fulfilling that wish to be a donor.” The court agreed and Elijah Smith’s organs were procured, leaving the family stunned and angry (Manning, 2013). Other cases have had similar outcomes (see, for example, McLean v. New England Donor Services, 2022; and Vati and Vati v. Donor Network of Arizona and Honor Health John C. Lincoln Medical Center, 2019).

Some scholars and activists argue for the importance of honoring first-person authorization and not accepting family overrides, as the Ohio OPO did, using what we call the respect-for-wishes argument (Shaw, 2012; Glannon, 2014; Toews and Caulfield, 2016; Albertsen, 2020). We argue that our current system for obtaining first-person authorization does not allow us to be confident that persons who give first-person authorization necessarily prioritize donation over all other considerations, including their family’s well-being or interests. This calls for a more moderate approach than simply rejecting the role of the next of kin in the presence of first-person authorization. Our current system for soliciting first-person authorization is inadequate for enabling individuals to make and communicate their wishes regarding organ donation. We also consider a second argument against family overrides of first-person authorization, namely, that accepting family overrides results in harm, for example, preventable deaths (Toews and Caulfield, 2016; Shaw, Haase, Gardiner et al., 2017). We argue that here, too, there are grounds for adopting a more nuanced stance toward family overrides of first-person authorization. Finally, we turn to the question of the role of families or legally authorized representatives in making decisions regarding premortem interventions for potential donors who are not yet deceased. We argue that such decisions are about living patients and should be treated like all other clinical decisions that legally authorized representatives make for incapacitated living patients.

II. REJECTING FAMILY VETO OUT OF RESPECT FOR THE DECEDENT’S WISHES

The family and OPO claims made in Elijah Smith’s case raise several questions regarding first-person authorization. First, was this in fact a case of an attempted but unsuccessful family override of first-person authorization that would have undermined or violated Mr. Smith’s wishes? Or, instead, was the family introducing new and relevant information about his wishes? Mr. Smith’s mother believed that his first-person authorization did not reflect his wishes because he had not fully understood the decision that he was making at the department of motor vehicles. She was suggesting that, had he understood, he would not have made an anatomical gift. If that is the case, then perhaps what she was doing was introducing new information about what his wishes were. In looking at family objections, we should be careful not to mischaracterize a potential objection by the decedent’s family as merely a family objection. Sometimes families might know that the person had indicated that he did not want to be an organ donor (see Shaw, Lewis, Jansen et al., 2020). Or, sometimes families might know something about the circumstances of death that they have very good reason to believe would have led a decedent to change his mind. For instance, if a family believes that they or the patient were treated with disrespect in the course of the hospital stay or that the care they received was inadequate, perhaps contributing to the death, they may be confident that, under those circumstances, the individual would not want to donate. Or, perhaps the decedent had discussed concerns about racism and disparities in access to transplantation and had said that he would not want to donate organs to a system that he believed mistreated people. That individual might not even remember having “checked the box” upon obtaining a driver’s license. In this case, the family objection is based on what they believe the decedent’s wishes truly were or wishes that the decedent had expressed directly. In objecting to donation, the family is providing information that was not previously available regarding the decedent’s wishes. If the goal of honoring first-person authorization is to respect the decedent’s wishes, then taking new information into account regarding the person’s wishes seems not only appropriate but essential, at least when that information is likely to be reliable because it comes from persons who were close to the decedent and knew him well. This is typical for the clinical setting when interpreting previously expressed wishes. Taking new information into account would not mean that the new information automatically results in non-donation. Instead, it requires further inquiry to understand the nature and significance of the information. What is sometimes called a family objection might in fact be a case in which the family introduces new information that challenges the claim that first-person authorization reflects the decedent’s wishes. Hence, there could be cases in which honoring first-person authorization in fact violates the decedent’s wishes.

At least in the West, where there is a strong notion of individual autonomy and respect for distributing property according to a will, the respect-for-wishes argument can be a powerful, persuasive claim for rejecting the family veto altogether. In cultures in which the family is the locus of decision-making, this could be different (Chen and Fan, 2010; Fan and Wang, 2019). However, a second problem with the respect-for-wishes argument is that first-person authorization, as typically obtained in the United States today, is not a reliable measure of a decedent’s wishes for two reasons. The first concerns limitations in what may be readily communicated at the time individuals give first-person authorization, and the second concerns the extent to which individuals understand the decision they are making. We address both of these here. The options available to people to communicate their wishes at the department of motor vehicles or on donor registries are crude. The driver’s license “yes” could mean different things to different people. There is no opportunity to distinguish a willingness from a deep desire to be an organ donor. Nor is there a way to communicate more nuanced preferences, such as any circumstances in which one would or would not want to donate or the role one might want one’s family to play in such decisions. There is no opportunity to rank end-of-life preferences, including concerns about one’s family or indicate where organ donation after death falls on that priority list. Nor is there an opportunity to indicate any preferences about premortem interventions, which we address later. Anecdotal evidence based on years of conversations with colleagues, friends, and students suggests that there is a spectrum of attitudes toward donation even among people who indicate that they have “checked the box” to be donors. Some people absolutely want to donate and would not want their family to override their decision, no matter the circumstances. They would be willing to endure multiple procedures to facilitate donation. Others are willing to donate but do not feel as strongly about it, and some assume that their family will have the final say. Some may be willing to donate as long as it does not mean that they will be “hooked up to machines” for longer than they otherwise would be. Proponents of always honoring first-person authorization, even against new information a family introduces regarding a person’s wishes or other family concerns, treat all people who gave first-person authorization as if they fit into the category of people who prioritize donation above all else. Yet, it stands to reason that not all do. If people do not know or understand what it means for first-person authorization to be binding, they might give authorization not appreciating what it means, and it might be mistaken to assume that they want to donate above all else. Furthermore, as an official statement published by multiple societies and organizations involved in organ transplantation states, “it is uncertain what people intend when they express first-person consent to become a deceased organ donor” (Gries et al., 2013, 107). For instance, we do not know “whether people comprehend the distinction between declaring death on neurological or circulatory criteria and whether their preferences for donation are influenced by the distinct processes required by these two pathways to donation,” an issue that we take up below in the context of discussing premortem interventions to facilitate donation (Gries et al., 2013, 107).

If respect for decedents’ wishes is in fact a top priority, then proponents of this argument for prohibiting family overrides of first-person authorization ought to advocate for additional changes to the system for soliciting first-person authorization so as to improve the likelihood that people can adequately express their wishes. This would facilitate knowing and therefore respecting their wishes. Changes might include creating an opportunity not only to authorize donation but to decline donation, rather than merely remaining silent (which defers the decision to the next of kin) or giving binding first-person authorization.

A second reason that we cannot be confident that first-person authorization obtained today accurately reflects decedents’ wishes is that the system is not designed to foster understanding, provide adequate information about organ donation, or ensure that the implications of first-person authorization are made readily available to decision-makers. In light of this, it is possible that first-person authorization does not reflect persons’ wishes, that is, what they truly want, since they might think that they are agreeing to something other than what first-person authorization authorizes. Based on current policy and practice in the United States, first-person authorization is secured in a way that makes it an unreliable source of information about decedents’ wishes, all things considered.

People agreeing to be organ donors by signing up at the department of motor vehicles or on a state donor registry are unlikely to be given information that some people might consider relevant to organ donation, including the possible impact their decision could have on their care before they die, the timing of death, the timing of removing their body from supportive measures, the possibility that they will undergo cardiopulmonary resuscitation after death is declared by neurological criteria to preserve their organs, the implications these decisions could have for their family, the possibility that they will be moved to a donor facility, the possibility that preferences they have regarding end-of-life care could conflict with organ donation practices, such as the possibility of being maintained alive longer to facilitate donation, or the differences between donation after declaration of death by neurological versus circulatory criteria (McKeown et al., 2012; Garwood-Gowers, 2013; Rady, McGregor, and Vergheijde, 2012; Gathani et al., 2016; Dalle Ave, Gardiner, and Shaw, 2016; Dalle Ave, Shaw, and Bernat, 2016; Weiss et al., 2021). Some people also might not realize that the decision they are making is binding unless they themselves revoke their authorization and they may be unaware of how to revoke it. It also is possible that some people may feel pressured to agree to register as donors when faced with a government official who stands between them and their goal of obtaining a driver’s license or when asked about their willingness to donate in front of other people (Bester and Gross, 2016). It seems that adolescents or others applying for a license for the first time might be particularly vulnerable to pressure or simply so anxious to secure their license that they will say “yes” without giving it any thought.¹ Circumstances that involve pressure of this sort could hinder a person from reflecting on the limited information available or asking questions, thereby undermining the opportunity to understand the decision. It also could undermine voluntariness, a point we do not develop in this article but that merits consideration (see Bester and Gross, 2016).

Proponents of prohibiting family overrides based on lack of understanding might respond that understanding is not necessary for first-person authorization to be binding. In other words, they might argue that Elijah Smith’s mother’s claim that he did not understand the authorization decision could be true but irrelevant. In 2012, the Organ Procurement and Transplantation Network expunged the term “consent” from its organ donation policy and replaced it with “authorization.” In explaining its decision, it explicitly stated that the goal in requiring mere authorization is not to show respect for individual wishes but to increase the donation rate:

Currently, UNOS policy uses the term “consent” to describe the act of making an anatomical gift. However, the public associates “consent” with the medico-legal concept of “informed consent” through which physicians must give patients all the information they need to understand the risks, benefits, and costs of a particular medical treatment. In the context of organ/tissue/eye donation after death, this blending of terms leads to misunderstandings about the act of donation that could hinder our national goal of increasing organ, tissue, and eye donation and transplantation. The OPO community has responded to this circumstance by changing the donation terminology from “consent” to “authorization.” This change focuses attention on the altruistic act of donation and reinforces the fact that donation after death does not involve medical treatment. (OPTN/UNOS, 2014)

Contrary to their claim, “consent” does not necessarily imply that donation after death involves medical treatment, but rather that the decision to become a donor, a decision that only the individual can revoke through a process that is not clearly outlined, requires that individuals be given a fair opportunity to understand information relevant to that decision. Even prior to the change in language, the information made available to people making an anatomical gift under ordinary circumstances, at the department of motor vehicles or enrolling in an online registry, was minimal and not designed to foster informed decision-making (Woien et al., 2006). Concerns regarding the quality of information available to people agreeing to donate remain (Rady, McGregor, and Vergheijde, 2012; Nair-Collins, 2013; Bester and Gross, 2016).

If avoiding the language of consent to minimize confusion is deemed sufficiently important, the Organ Procurement and Transplantation Network could have called for a process that facilitated informed decision-making without invoking consent. They did not. Although it has not been made clear why, it is possible to argue that it is not important that people understand information relevant to organ donation before giving binding first-person authorization because people can make other decisions of great consequences without understanding those decisions. For instance, people may complete living wills and advance directives without much understanding of the decisions they are making. This, along with other concerns, challenges the validity or utility of advance directives (Fagerlin and Schneider, 2004; Gillick, 2010; Reed, 2019). One difference is that living wills and advance directives typically have to be interpreted and applied to specific circumstances in ways that often do involve families, particularly because they sometimes contain contradictory information or because the patient had not anticipated the specific circumstances he faces. Similarly, people complete wills regarding the disposition of their property after death, which are almost always binding, and they might not understand some of the implications of those decisions or they might not have facts available to them that would lead them to choose otherwise. Even then, there is a process for contesting a will and introducing information that could result in a different outcome. Moreover, anyone who uses a reliable attorney to craft a will almost certainly has more information and considers scenarios that the person might not have envisioned. One could argue that in the cases of advance directives and wills, even if understanding is not legally required, it is highly desirable. If it is desirable, then one has to wonder why the current system for authorizing organ donation does not at least attempt to facilitate understanding even if it does not require it, particularly if the practice is meant to respect persons’ wishes. In the absence of information relevant to the organ donation decision, it is hard to know whether someone would make the same decision, were that person to know more, and it is unclear how confident we can be that this is not only their wish but their wish above all else.

All of this together suggests that first-person authorization is not up to the task of reflecting decedents’ clear wishes, such that enforcing first-person authorization promotes respect for wishes or respecting autonomy. A commitment to respecting a decedent’s end-of-life wishes speaks against rather than in favor of the current approach to soliciting first-person authorization.

III. REJECTING FAMILY VETO FOR CONSEQUENTIALIST REASONS—PREVENTING HARM

In addition to justifications for overriding next of kin objections to organ donation grounded in respecting decedents’ wishes, some advocates might defend universally rejecting the family veto (as well as limiting the options for communicating more nuanced wishes and limiting the information made available when people are asked to give first-person authorization), to maximize the number of organs available for transplantation and the number of lives saved or improved through transplantation. The strength of these consequentialist arguments depends on the outcomes and costs associated with overriding or respecting next-of-kin objections and the value or significance we assign to those consequences. The full range of potential consequences, not only the number of organs made available for transplantation and the number of organs actually transplanted, must be considered in assessing outcomes. Given the high discard rate (Bae et al., 2016; Carpenter et al., 2019; King et al., 2019; Neumann, 2021; Reul, Loor, Garcha et al., 2021; Reul, Saleem, Keller et al., 2021), the uncertainty about how many organs would be lost if family overrides were permitted in at least some cases in the presence of first-person authorization, and the low rate of attempted family vetoes in the presence of first-person authorization (Chon et al., 2014; Mohan et al., 2016), it is not clear how many fewer lives would be saved or improved by allowing family vetoes in some circumstances. Nevertheless, it is possible that fewer organs would be available for transplantation, which some would argue gives reason never to allow family overrides. Another potential negative outcome of allowing family vetoes is that people may be concerned that their expressed wishes about organ donation or other preferences about what happens to them after they die will not be respected.

Negative consequences of disrespecting family objections must be considered as well. Prohibiting family overrides in all circumstances also could result in harm. Pursuing organ procurement in the face of significant family opposition, including in cases in which families believe that the deceased individual would not have wanted to donate, could leave families feeling guilty, angry, and hurt that they did not protect the person. It also could undermine trust more broadly in the healthcare system or institution not only for the family but for their broader circle (Volk and Ubel, 2008b). For instance, it could perpetuate the view that clinicians will not do their very best to save lives because they are “hungry” for organs, and potential donors receive a lower quality of care (Ralph et al., 2014). Perpetuating these concerns in society could lead more people to decline to donate. Concerns about the organ donation system and trust regarding the potential impact of donor status on one’s medical care are among the reasons people describe for being unwilling to sign donor cards (Morgan et al., 2008). When organ donation delays death or requires that the body of a person who has been declared dead continue to be maintained using organ preservation interventions such as a ventilator, a delayed grieving process may be difficult for the family (Shaw, Lewis, Jansen et al., 2020; Verble et al., 2020). Similarly, families may be harmed when organ donation leaves them unable to spend what they believe to be adequate time with the decedent (Ralph, Chapman, Gillis et al., 2014) or to be present at the time of withdrawal of life-sustaining interventions (Verble et al., 2020). In the case of donation after circulatory death (DCD) donors, delaying the withdrawal of life-sustaining interventions to facilitate donation may be unacceptable (Verble et al., 2020). Organ-preserving cardiopulmonary resuscitation performed on individuals who have been declared dead using neurological criteria and have not yet donated organs may be distressing to families and healthcare professionals for various reasons (Dalle Ave, Gardiner, and Shaw, 2016). It could, for example, leave families confused about whether the person is truly dead. The circumstances of a case will dictate which potential harms are relevant and how much harm might result. Family distress might not be decisive, but it is a relevant harm that merits consideration (Shaw, Lewis, Jansen et al., 2020). It is not possible to know antecedently which potential consequences would occur under different approaches to family overrules of first-person authorization, and the ways in which we assign value to those consequences to guide policy and practice decisions will remain contentious.

An additional question to consider in evaluating the family veto from a consequentialist perspective is whether enforcement of first-person authorization disproportionately affects certain populations. One concern might be that allowing family overrides in some cases and not others results in inequitable treatment. For example, if families from some racial, ethnic, or socioeconomic groups are more likely to be allowed to override first-person authorization, then allowing some family overrides and not others might result in inequitable treatment and perpetuate injustices. While we have not found data on respecting family overrides by race or ethnicity, in light of evidence of disparities in many domains in our healthcare system, this is a reasonable concern. In particular, there is evidence that when next of kin are asked to donate human tissue from a decedent, people who are older and non-white are given less information than other people by tissue requestors (Siminoff and Traino, 2013). Disparate treatment in the tissue donation context suggests the possibility that there might be disparate treatment in the organ donation context as well. Thus, it is possible that some groups might be more likely to have an attempted family veto respected than others. One response might be to uniformly prohibit family overrides so that everyone is treated the same way. It is possible that a uniformly applied policy prohibiting family overrides would disproportionately affect certain populations. If the rates of attempted family overrides vary by race, ethnicity, religion, or socioeconomic status, for example, then those groups are more likely to be adversely affected by prohibiting family vetoes even when they are uniformly prohibited. In other words, if family overrides never are allowed but some demographic groups are much more likely to object to donation even in the face of first-person authorization than the population overall, then those groups are disproportionately affected by the uniformly applied policy. This would be a case of disparate impact in the face of equal treatment, which would merit further consideration because this is the kind of circumstance that some would argue is inequitable. Another option is uniformly permitting family overrides.

Relying on these or other potential consequences to argue for or against allowing family overrides in at least some circumstances depends on the value and significance we assign to the various possible outcomes. These arguments could be used to defend the practice of prohibiting all family overrides or allowing them in at least some cases depending on how we treat different outcomes.

IV. PREMORTEM INTERVENTIONS AND THE ROLE OF THE FAMILY

Thus far, we have focused on the decedents’ wishes and decisions about organ donation after death. We turn now to questions regarding the role of the family and first-person authorization in making decisions about premortem interventions on living patients who might become eligible to donate organs. Premortem interventions are interventions performed on living patients to increase the possibility of success in organ donation and transplantation (Downie et al., 2008; Weiss et al., 2021). Prior to progressing to neurological death, for example, a patient who otherwise would have life-sustaining interventions withdrawn might instead continue to receive mechanical ventilation and other measures to see whether the patient would progress to brain death and become an eligible donor (Manara and Jewkes, 1995; Downie et al., 2008; Weiss et al., 2021). One risk of extended ventilation in these cases is the possibility that a patient goes into a persistent vegetative state (Downie et al., 2008; Fabre, 1995; Weiss et al., 2021). Similarly, a patient who may be eligible to donate through a DCD protocol and from whom life-sustaining interventions will be withdrawn might be maintained alive longer to coordinate the donation process (Downie et al., 2008; Tregillus, 1995; Garwood-Gowers, 2013). In both cases, this means that the patient is kept alive longer and the dying process prolonged for the purposes of organ donation. DCD candidates may have life-sustaining interventions withdrawn in the operating room with limited ability for family to be present with the person at the time of death (Weiss et al., 2021). Various medications may be administered prior to death in patients who are DCD candidates, some of which are not beneficial to the patient. These include heparin or other anticoagulants, which have a risk of bleeding, and phentolamine or other vasodilators, which can lower blood pressure, to increase blood flow to organs (Downie et al., 2008; Weiss et al., 2021). Prior to death, mechanical ventilation interruption trials sometimes are performed on patients who might be DCD candidates to assess the likelihood that the patient will die within the time period the DCD protocol requires, a process that carries risks to the patient (Lewis et al., 2003; Downie et al., 2008). Some centers that utilize extracorporeal membrane oxygenation in DCD donors with the goal of improving outcomes insert cannulas prior to death (Dalle Ave, Shaw, and Bernat, 2016). Morphine or other analgesics are used to minimize pain or discomfort in patients (Downie et al., 2008; see Bell, 2003). These interventions, all of which carry risks, are done not for the benefit of the patient but to facilitate donation. The only exception is analgesia, although that is required only because of interventions done for the organ donation process and not because of the patient’s underlying condition or interventions done for the benefit of the patient.

There is disagreement in the literature over the degree to which various premortem interventions pose risks to patients, with some holding that they do not carry any risks of harm (Bell, 2003; Richards and Rogers, 2007; Brierley and Shaw, 2016; The Alliance, 2021b, 2024). Although legally authorized representatives routinely authorize premortem interventions, there is also disagreement regarding the extent to which these risks are justifiable and whether it is ethically permissible for legally authorized representatives to authorize premortem interventions aimed at benefiting people other than the patient for the sake of those third parties or whether postmortem interests of the potential donor can justify premortem interventions (Weiss et al., 2021). Some authors argue that the potential to benefit society by honoring prospective donors’ postmortem wishes to donate justifies premortem interventions, particularly because those interventions pose relatively low risk (Weiss et al., 2021). Others argue that legally authorized representatives should not only be able to authorize these interventions but that they should be provided with the opportunity to authorize these interventions to facilitate donation (Weiss et al., 2021).

Legally authorized representatives have the authority and responsibility to make decisions regarding premortem interventions for all living patients who may become eligible to donate organs, as the American Society of Anesthesiologists (2012) makes clear: “Informed consent of the patient or agent is necessary for any premortem cannulation of large arteries and veins, or any other medical interventions to optimize the organs for donation prior to death.” Even the Organ Donation Alliance says in a document entitled “Donation After Circulatory Death: Honoring First-person Authorization—Part 1: The Legalities,” that “given that these interventions occur prior to death, informed consent must be obtained from the patient’s family or legal decision makers” (The Alliance, 2021a). Others agree (Downie et al., 2008; Organ Donation Taskforce, 2008; Then et al., 2023). Nevertheless, sometimes clinicians and others assume that authorization to donate organs implies consent to any interventions that may facilitate donation prior to death (Bos, 2005; Camut et al., 2014; Gathani, Moorlock, and Draper, 2016). In section 21, the Act addresses situations in which a person’s expressed end-of-life wishes conflict with practices necessary to pursue organ donation. The Uniform Law Commission’s commentary on section 21 of the Act implies that a person who gave first-person authorization would prioritize donation over other factors and would want premortem interventions to facilitate donation:

Section 21 creates a default rule to adjust the tension that might exist between preserving organs to assure their medical suitability for transplantation or therapy and the expression of intent by a prospective donor in either a declaration or advance health-care directive not to have life prolonged by use of life support systems. The default rule under this [act] is that measures necessary to ensure the medical suitability of an organ for transplantation or therapy may not be withheld or withdrawn from the prospective donor. A prospective donor could expressly provide otherwise in the declaration or advance health-care directive (National Conference of Commissioners on Uniform State Laws Revised Uniform Anatomical Gift Act, 2006).

We find implausible the assumption that the typical person who gives first-person authorization for organ donation understands that decisions to donate organs after death could affect decisions about their treatment prior to death, including extending their lives and requiring that aggressive life-sustaining interventions be initiated or continued. Treating first-person authorization or postmortem donation as a source of authority for premortem treatment decisions puts more weight on first-person authorization as a reliable tool for communicating a person’s preferences than the process warrants. Some people, given more information and contemplating the possible implications for their families, might in fact set limits on what could be done to them prior to death. Others likely would not. But we have no easy way of distinguishing among such persons and no evidence that first-person authorization reflects a person’s top priority. First-person authorization for organ donation does not and should not be seen as authorizing premortem interventions, nor should one assume that first-person authorization is evidence that the patient would want premortem interventions to facilitate donation. The process for securing first-person authorization is not sophisticated enough to warrant such an assumption. Although rare, if a patient who might be a DCD candidate has decision-making capacity, the patient should make decisions regarding premortem interventions. In all other cases, legally authorized representatives have the responsibility and authority to make decisions regarding premortem interventions.

Furthermore, family decisions to decline consent for premortem interventions should not be mischaracterized as vetoing organ donation or overriding first-person authorization. They are decisions about interventions on living patients. Surrogate decision-makers ought to make decisions for living patients in accordance with the ethical, legal policies, and practices that govern surrogate decision-making. Declining premortem interventions is not the same as a family veto and does not constitute overriding first-person authorization. Some authors describe decisions to decline premortem or life-sustaining interventions as family overrides (Verble et al., 2020). Consider this analysis of family concerns regarding DCD donation:

In one instance, the patient had both signed the registry and expressed a desire not to be intubated, and the family, which was prodonation, preferred extubation to donation. In another case, in which a systems problem complicated the approach, the prodonation family decided to withdraw life support but to donate tissues. In short, the registries, unless enforced over the objections of families, do not ensure donation in DCD cases. (Verble et al., 2020, 2870)

In suggesting that these are cases in which first-person authorization was not “enforced over the objections of families,” the authors imply that enforcing first-person authorization would have resulted in continued intubation and other life-sustaining interventions prior to death. They imply that enforcing first-person authorization would mean requiring that a living patient’s treatment be dictated by decisions the person made about postmortem donation, rather than allowing the patient’s legally authorized representative to make decisions about what is and is not done to a living patient. It suggests that the family overrode first-person authorization by making treatment decisions regarding life-sustaining interventions for a living patient. This is a mistake. Rejecting premortem interventions or deciding to forgo interventions on living patients when doing so may render them unable to be organ donors is not a violation of first-person authorization. Such decisions fall within the scope of authority and responsibility legally authorized representatives have for incapacitated patients and should not be described as overriding first-person authorization for postmortem organ donation. They are decisions about and for living patients.

Decision-making standards for surrogate decision-making concerning clinical care ought to guide decisions regarding premortem interventions. Local laws vary, but three widely accepted standards for surrogate decision-making exist: expressed preferences, substituted judgment, and best interest. Legally authorized representatives have a responsibility to make decisions based first on previously expressed wishes of the patient, which should include their expression of a willingness or desire to be an organ donor as well as all other previously expressed wishes or preferences. Substituted judgment should be used when the patient has not previously expressed a relevant wish or preference, and, when that is not possible, then legally authorized representatives should make decisions based on the best interest of the patient. First-person authorization as currently obtained and communicated is, at best, an expressed wish about what one wants after one’s death, much as one might express a wish to be buried and not cremated. It is not an expression of a desire for premortem interventions. However, legally authorized representatives may and should use what is known about the patient’s preferences regarding organ donation, as well as all other known wishes and preferences, in making decisions about premortem interventions (see Then et al., 2023).

V. CONCLUSION

In the United States, first-person authorization for organ donation typically is secured under circumstances that give individuals little information regarding the implications of the decision before and after death or a host of factors that some people likely would consider relevant to their decision-making. It also offers limited opportunities for people to communicate their wishes and preferences with respect to organ donation vis-a-vis other wishes, preferences, and priorities. Standard procedures for obtaining and documenting first-person authorization are inadequate for securing clear insight regarding what individuals desire, including how their desire or willingness to donate organs aligns with other priorities they might have. This warrants more appreciation for the role of families in organ donation and a more careful response to family objections in the presence of first-person authorization than that which current law and practice in many OPOs reflects. The legitimacy of legally binding first-person authorization that disregards family considerations, at the very least, would require greater transparency to potential donors regarding many aspects of organ donation, an easy opportunity to express more nuanced and specific preferences, and a readily accessible path to documenting changes in their expressed preferences or wishes over time.

Furthermore, upholding first-person authorization despite family objections could lead to distress for the family and/or potential harm to the decedent during premortem care with the goal of prolonging life-sustaining measures to increase the chance of organ viability. Disregarding family wishes and the implications of first-person authorization on premortem interventions could cultivate distrust in healthcare professionals who are responsible for the decedents’ care and perpetuate health inequities that already exist in the healthcare system between races, ethnicities, and variability in socioeconomic status. Hence, it is important not to merely think of increasing the number of organs donated but also to consider the potential harms that could transpire as a consequence of upholding first-person authorization in the face of family objections.