Revising Organ Procurement Organization Guidelines to Obtaining Family Consent for Deceased Donation: An Anthropologically Informed Policy Proposal

April 22, 2024

By Gillian Tisdale


Organ transplantation has become a widespread medical practice with public policy designed to increase rates of deceased donation. When individuals have not registered as organ donors, next-of-kin are called on to make donation decisions—requiring families to grapple with the often-confusing concept of ‘brain death’ and parse their understanding of what the deceased would have wanted. Current public policy is explicitly designed to promote high donation rates without clear regard to the experiences of donor-families; at best, these policies prime donation conversations to involve unethical practices, while at worst, the disregard of kin’s experiences may also diminish deceased donation rates. Anthropological literature has documented the often aggressive tactics used by transplant organizations that demonstrate a disregard for the emotional experiences of kin. In 2023, Congress passed the Securing the U.S. Organ Procurement and Transplantation Network Act, prompting the United States Department of Health and Human Services (HHS) to reevaluate organ donation policies and solicit requests for proposal for a new federal contractor to take over the network responsible for overseeing all organ sharing. This article leverages the relevant anthropological literature to provide guiding principles and proposed language amending the Centers for Medicare & Medicaid Services (CMS) Interpretive Guidance that HHS could implement as part of its modernization initiative. These principles aim to improve experiences for kin without lowering donation rates. The article recommends that HHS and its contractors collect metrics to measure the quality of Organ Procurement Organization (OPO) interactions, counterbalancing current benchmarks focused on procurement rates. It also recommends improved protocols to empathically and systematically support kin’s understanding of brain death. 


Organ transplantation—and, by extension, donation—have become entrenched in modern medical practice. Although organ donation has arguably not yet become obligatory, either legally or socially, it is well on its way to becoming ‘ordinary medicine’: a procedure that is normalized by the medical-industrial complex and accompanying public policy (Fox and Swazey 2002, 6; Kaufman 2015). 

Proponents of increasing deceased organ donation espouse the quality and years of life gained by recipients. According to some, taking organs ‘to the afterlife’ is selfish since the organs are no longer useful to the deceased, and not donating denies someone sick a second chance at life. Proponents of cautious organ donation protocols, however, express concern over the emotional outcomes of surviving kin [1] and the ways in which organs are processed through the medical system like any other commercialized substance. 

The ‘ordinary medicine’ of organ donation in the United States is made possible by the Organ Procurement and Transplantation Network (OPTN), overseen by a single federal contractor since its inception in 1986. This contractor, the United Network for Organ Sharing (UNOS), has been the subject of scrutiny for underperformance; a 2022 Senate Finance Committee report summarizing a bipartisan effort to investigate OPTN concluded in part, “UNOS seems focused on making OPTN policy changes rather than conducting actual oversight of OPOs ["Organ Procurement Organizations"] and other members, [instead,] UNOS points fingers and suggests it is up to the OPOs or the federal government to fix the failures of its membership” (United States Senate 2020). As a result, in 2023, the House and Senate passed the OPTN Modernization Initiative as part of the Securing the U.S. Organ Procurement and Transplantation Network Act, which would compel biannual Government Accountability Office (GAO) review (Health Resources & Services Administration 2023a; n.d.). The Health Resources and Services Administration (HRSA) is currently soliciting proposals for the next OPTN federal contract and has stated that it will attempt “to ensure that patient, family, and clinician voices are engaged in this work;” although HRSA has held RFP processes for OPTN in the past, given the gravity of the 2023 Act, it appears more likely that UNOS faces real competition for the upcoming contract (Health Resources & Services Administration 2023a). The contract has not yet been awarded, and UNOS announced that they will participate in the bidding process (United Network for Organ Sharing 2023). 

These voices, particularly those of families of deceased organ donors, have already been meticulously collected by social scientists criticizing the protocols of UNOS and their member OPOs. While OPOs are required by law to participate in the OPTN, run by UNOS, OPO staff are independent organizations composed of individuals interacting directly with families. Although further primary research would be beneficial to better understand how different demographics are impacted by the status quo, the existing literature provides a foundation for high-level guardrails aimed at making organ procurement efforts simultaneously more ethical and effective. In anticipation of new OPTN leadership, policymakers can learn from UNOS’s mistakes and use research to inform policies that protect families while increasing the likelihood of donation.

This article draws from the anthropological literature to shed light on pervasive issues within deceased donation in the United States and the data-driven ways to mitigate these trends. We will first review the U.S. federal and state policies governing deceased donation, all of which are explicitly in place to maximize the supply of organs. We will then examine the available literature documenting the experiences of families asked to donate kin’s organs. Finally, we will interrogate what we can learn from the ethics underpinning organ donation philosophies and how we can improve the system for everyone involved—safeguarding ethical treatment of families while increasing donation rates—through new public policy.


Part I: An Overview of OPO Regulations

Before delving into the issues experienced by families and next of kin during the consent process, we shall first examine the existing policies governing OPO behavior in these settings. Specifically, we will look at the definitions of ‘brain death’ that conceptually enable organ donation, the different international frameworks used to establish consent, and the U.S. federal laws and regulations pertaining to requesting that consent.

Defining Death and Donation

Deceased donation, which comprises the majority of organ transfer in the United States, rests on a relatively new definition of death created in the mid-20th century (Organ Procurement and Transplantation Network n.d.) [2] the  Meta-medical conceptions of death depend on directly perceivable attributes, such as the cessation of breath and heartbeat, limbs that grow cold, and lips that turn blue; although conceptions of death are culturally varied, they coalesce around ‘cardiac death’, which refers to the cessation of the heartbeat. Advances in medical technology, however, have created new liminal states that demand equally new definitions of death: as bodies are kept suspended on physiologic support that conducts bodily operations, including breathing, people can become neurologically deceased [3] the  while their body is still hooked up to machines in artificial animation. These situations—often the result of traumatic automobile accidents or self-harm—leave organs permissible for donation trapped, so to speak, in people who are no longer neurologically present in their bodies (Sharp 2006, 51). The (artificially created) need to recover healthy organs from people who are no longer neurologically alive, and whose bodies would reach cardiac death once unhooked from machinery, has led to the advent of ‘brain death’ as a new category. 

Originally coined by the Harvard Ad Hoc Committee in 1968 and subsequently adopted by the American Medical Association, brain death bureaucracy unlocked a liminal state wherein organs could be ‘harvested’ without violating the social or legal code (Lock 2002, 103–104, 111; Sharp 1995, 361–362). This determination within the medical community led to the passage of the Uniform Determination of Death Act (1981), which codified the clinical tests required to declare brain death. Although brain death has enjoyed widespread acceptance among the majority of medical professionals, some providers have pushed back over concern that not all bodily functions have ceased in brain-dead individuals [4] the , while others point out the inherent “unclassifiable” contradictions within the definition of brain death (Iltis 2015, 373; Crowley 1998, 27). One study suggested that there is no consensus for the theoretical underpinnings of brain death even among neurologists that fully accept the concept (Joffe et al. 2012).

International Frameworks for Consent to Donate

Given that deceased donation rests on the premise of brain death, governments have had to contend with how this definition, in tandem with the preexisting rights of the deceased and their family, should inform policies governing consent. On one theoretical extreme, the state owns the right to organs after death; [5] the  on the other, the donor and/or their family must wade through intensive forms and procedures to register as a donor in the service of obtaining informed, active consent.

Globally, most countries’ systems fall into two camps: presumed consent and explicit consent. Under presumed consent, the state assumes that people will be organ donors upon declaration of brain death unless they have opted out at some point in their lives. This is also called the opt-out system. Adoption is loosely correlated with more liberal-socialist societies, including much of Scandinavia. In practice, so few people opt out in comparison to levels of support expressed in opinion polls that it begs the question of whether people are truly in favor of being donors or do not opt out for other reasons. [6] the  As a result, providers will often gauge the feelings of the family of the deceased before proceeding, although they are typically not required to obtain consent (Thaler and Sunstein 2021, 254).

The United States, along with many other countries, operates under an explicit consent/authorization framework. Under this system, the deceased or their kin must have explicitly opted in to donate; in the United States, this can be done while renewing one’s driver’s license or in a few steps on many websites. If a potential donor has not explicitly consented in their lifetime, we do not assume they have opted out unless they have written a legal document (such as a living will or advanced directive) to this effect, meaning that next of kin are prompted to provide consent instead (Uniform Law Commission 2006, 26-27). Opting out is rare because the United States does not have an accessible system meant to facilitate this decision, nor is opting out an option in donor registries (Uniform Law Commission 2006, 15). 

Kin’s wishes do not have legal standing if the deceased explicitly expressed their wishes regarding organ donation in life, whether through registration or another legal document. [7] the  If someone registered to be a donor in their lifetime, Organ Procurement Organizations are theoretically supposed to involve the family in the conversation but are ultimately allowed to proceed with organ harvesting regardless of the family’s stance. According to a survey published by the University of Chicago, 59 percent of OPOs surveyed said that they would continue with donation against a family’s wishes when legally permissible (UChicago Medicine n.d.). The prevalence of campaigns to register organ donors while alive has led to “a greater acceptance of the commoditization of human organs,” according to anthropologist Lesley Sharp, potentially crowding out the opportunity for complex emotions in the face of this new death (Sharp 1995, 363). OPOs may, in some instances, respect the family’s choice to reject donation in the face of donor registration but are not required to do so.

On the other hand, when someone has not registered to be a donor, the body enters a legal limbo wherein kin have control over the outcome: family members are swiftly approached to authorize donation. The ability of next of kin to determine organ donation in the absence of premortem donor registration arises in part from the overall deference of medical professionals to kin when the individual is incapacitated, as in the case of treatment decisions for living patients. Yet, the category of brain death adds complication to already opaque legal grounds. The foundational American notion of a ‘proprietary individual’ and subject/object division leads to a “web of interconnected dichotomies upon which liberal law depends [...] as new phenomena continually emerge which challenge [its logic] by exposing some of its central contradictions” (Crowley 1998, 27). In devising a new definition of death, the medical system now faces internal inconsistency in how it conceives of deceased donors and bodily autonomy. According to some scholars, the legal history of the next of kin’s “property rights” over the body in the more traditional instance of funeral arrangements reflects judgments made to safeguard emotional attachments (Murray 1996, 116–117). Legislative text, however, elides the distinction between kin having vested interest as they did when the person was neurologically alive and the interest they will have in their responsibility to properly dispose of the body after cardiac death. Stewardship of the neurologically postmortem body is murky, and whether the legal intent or social responsibility is for kin to act on behalf of the deceased (similar to a medical proxy) or in their own best interest (as property rights) remains unclear. [8] the 

Organ Procurement Governance & Regulations

The National Organ Transplant Act of 1984 (NOTA) established the Organ Procurement and Transplantation Network, codifying the practical requirements and procedures for organ donation. Congress’s idea behind OPTN was that it would be a national registry to maximize organ matching and availability. In 1986, the United Network for Organ Sharing won the federal contract as a public-private partnership to manage OPTN under the authority of the Health Resources and Services Administration of the Department of Health and Human Services. UNOS currently creates many of the day-to-day policies followed by members of OPTN, including OPOs, hospitals, and specialists, while HRSA is responsible for regulatory oversight of UNOS and OPTN (Fleisher et al. 2023). When the new contract is awarded to UNOS or its successor, the contract will require fulfilling similar obligations. Finally, the Centers for Medicare & Medicaid Services (CMS), which fund two of the country’s largest health plans, create relevant policies that de facto influence organ procurement by virtue of the plans’ coverage. [9] the  CMS is furthermore responsible for regulatory oversight of OPOs (United Network for Organ Sharing n.d.(a)).

Although UNOS is not responsible for every aspect of OPOs, they are highly influential in their oversight as members of OPTN. [10] the  A notable condition for OPTN relevant to our analysis of family considerations is that the Board of OPTN should be composed of at least 25% “transplant candidates, transplant recipients, organ donors and family members” to reflect the perspectives of those affected by organ sharing policy (42 U.S.C §121.3). As part of the OPTN Modernization Initiative, this board will be run by a separate non-profit entity from whichever organization is awarded the OPTN contract (Health Resources & Services Administration 2023(a)).

Many states have passed individual legislation regulating OPOs above and beyond what exists at the federal level, but these vary across jurisdictions (Sharp 2001, 115). The Uniform Anatomical Gift Act (UAGA), drafted by the National Conference of Commissioners on Uniform State Laws, provides a template for legislatures when updating state-level acts to provide uniformity across borders. 46 states have implemented iterations of the 2006 updated version, which was developed in partnership with UNOS and the U.S. Department of Health and Human Services (HHS). This act is crucial for OPTN’s operations since organs are often procured in one state and donated in another, making it challenging to operate under possibly conflicting laws in a short timeframe. 

Neither the Federal Code nor UAGA provides sufficient guardrails for approaching families. Upon declaration of brain death, a member of the medical staff at the providing hospital is required to ask the next of kin for consent to donate. Only OPO staff or trained hospital staff are allowed to approach families about donation, and hospitals must notify their affiliated OPO in a “timely manner” about imminent brain death for eligible donors (Department of Health and Human Services Office of Inspector General 2000). 42 Code of Federal Regulations [11] the  (C.F.R.) §486.342 governs how OPOs must ask families for consent, with the most applicable part of this code simply stating, “an OPO must encourage discretion and sensitivity with respect to the circumstances, views, and beliefs of potential donor families” (42 C.F.R. §486.342). CMS provides additional “Interpretive Guidance” for this section:

42 C.F.R. §486.342: the OPO must be sensitive to any factors (from record review, hospital staff information, their own knowledge regarding religious beliefs or information received) which indicate that the OPO should not pursue consent (Centers for Medicare & Medicaid Services 2018, 61).

In short, CMS Interpretive Guidance requires that OPOs and Designated Requestors demonstrate “sensitivity” to family needs, but provide no specifics around how to do so. The elements presented above summarize all that pertains to the emotional treatment of would-be donor families across extensive legislation and guidance, amounting to insufficient support for those tasked with the sensitive treatment of families under grim conditions. Although CMS is likely not positioned to outline specific verbiage for use by OPO counselors, in the absence of such guardrails, they should require ongoing measurement of related outcomes. 

OPTN policies reveal the same level of specificity regarding their protocol for asking families for consent as CMS guidelines do (Organ Procurement and Transplantation Network Policies 2023). According to UNOS’s public materials,

The doctor talks to the family about the patient’s death. Then, someone from the OPO, or specially-trained hospital staff, talks to the family about donation. If the patient signed up to be a donor in his/her state or national registry, that information is shared with the family and the OPO family counselor talks to the family to explain the donation process and answer all of the family’s questions. The OPO and hospital work together as a team to support the family and honor the patient’s wishes (United Network for Organ Sharing n.d.(b), emphasis added).

OPO counselors [12] the  are only allowed to approach the family regarding consent to donate after (brain) death has been declared, although they are often notified by hospitals regarding a potential donation in advance (Borovoy introduction to Lafleur and Drott 2022, 18). OPO counselors, before obtaining consent from families, may be provided with “free and full-time access even before formal consent has been acquired or brain death declared” (Sharp 2001, 118). Furthermore, the 2006 update of the UAGA states that persons who will, upon death, be eligible to make an anatomical gift may consent to donation prior to the declaration of death, conditional on brain death actually being declared, and that OPOs may conduct pre-donation testing on persons who have not yet been declared brain dead unless they are notified that the individual “expressed a contrary intent” (Uniform Law Commission 2006, 37, 45). Therefore, emerging policies enable OPO counselors to be available and present during the dying process, which may subliminally influence the decisions or experiences of kin.

As we have seen, none of the publicly available policies governing OPTN or OPOs at a national level ensure appropriate treatment of families commensurate with the gravity of the situation. There may be private policies at the OPTN-level or within specific OPOs that address the donation process or treatment of kin. A few OPOs outline their preferred approach or verbiage to use with families in public pamphlets, some of which clearly focus on maximizing donation rates, such as through “early involvement of [OPO] staff with NOK” (LifeCenter Northwest 2011; LifeGift 2021; LifeNet Health n.d.). The possible existence of unknown policies governing the treatment of kin should not be dismissed; however, as we shall outline in the next section, kin’s lived experiences demonstrate the effects of inadequate policies in the status quo. National policies are needed to guide interactions between counselors and kin, which OPOs may tailor to the specific needs of their local constituencies. Moreover, it is critical that psychosocial outcomes for families are measured at a national level by OPTN and reported to federal subagencies such as CMS and HRSA.

Surgeons stand facing away from the camera in an operating room, with the patient out of view.

Source: Piron Guillaume [] on Unsplash [].

Part II: Familial Needs & Issues in the Consent Process

What do families need while grappling with the request for consent? [13] the  The research in this space is, unfortunately, relatively sparse and much of the available literature focuses on methods to increase donation authorization regardless of the emotional impact on families. Yet, the existing anthropological, linguistic, and philosophical research can provide policymakers with a foundational understanding of familial needs. This section will organize these into overarching considerations to inform policy proposals.

The Paradox of Who Starts the Conversation

As mentioned above, the treating hospital is legally required to dispatch trained medical personnel to request consent and to notify their local OPO in the instance of brain death. The practice of “de-coupling” brain death and donation takes on a few meanings—the medical provider that declares the donor’s brain death may not be involved in the recipient’s care team and conversations about brain death and donation should be undertaken separately—both of which help to avoid a perception of conflict of interest and to assuage familial fears that the patient is being given up on (Borovy Introduction to Lafleur and Drott 2022, 25; Valdes et al. 2002, 131). Regardless, medical personnel are frequently uncomfortable bringing up donation and leave the conversation to OPO counselors (Crowley 1998, 33; Fox and Swazey 1992, 58–59; Sharp 2001, 122). 

Illustrating the possible dynamics involved in donation proceedings, Valdes et al. present a case study on a 31-year-old man admitted for severe neurological injury after a motor vehicle accident (Valdes et al. 2002). He had been intubated (a form of life support that assists breathing) and brain scans showed internal bleeding. While under observation in the ICU, next of kin were called to the hospital and informed of his poor prognosis. Within a day, the patient exhibited telltale signs of brain death [14] the  and had no blood flow to the brain. After these examinations, the OPO counselor was called, who advised providers on how to maintain organ viability. Thirty-six hours after admission, the attending physician declared brain death. While telling the family that the patient had passed, the physician “planted the seed” about organ donation (Valdes et al. 2002, 130). Although he didn’t explicitly ask for consent in the conversation, the physician did not fully de-couple death and donation. Subsequently, OPO staff counseled the family, focusing on ensuring their understanding of brain death. The family eventually consented to the donation. 

Research has shown that conversations broached by procurement professionals rather than medical staff are associated with an increased probability of donation (Rodrigue et al. 2006, 192–193). An uptick in donation rates, however, does not necessarily constitute positive outcomes for families. OPOs have been shown to put immense pressure on next of kin and frequently treat it like a one-sided conversation (Iltis 2015, 372–373). OPO counselors may follow a “presumptive approach for organ donation,” behaving as if “we have a shared view of the good” (Iltis 2015, 377–378). Social psychologists Richard Thaler and Cass Sunstein, authors of the renowned book Nudge that brought issues of organ donation consent into the popular debate, push back on the presumption that organ donation is an inherent good in their 2021 edition and question the relegated role of grieving family members (Thaler and Sunstein 2021, 256). Because organ donation is perceived to be socially beneficial under an analytic scientific approach, procurement professionals often blame refusal to donate on illogical “social factors” rather than legitimate emotional responses (Sharp 2001, 113, 116). 

At a minimum, OPOs present a heavily pro-donation view with no counterpart available to advocate for holistic support. Some scholars, furthermore, critique them for flattening the complexity of brain death and they have been known to use “aggressive” strategies to handle “difficult to manage” families (Iltis 2015, 372–373; Sharp 2001, 117). This issue is exacerbated by a lack of identification protocol leading kin to initially believe that OPO counselors are hospital staff (Sharp 2006, 55). One common tactic counselors use is to pressure families to create meaning through ‘giving life’ when a young person tragically dies, which is reflected by the increased likelihood in regression analysis of donation when the deceased is young (Fox and Swazey 1992, 33–34; Rodrigue et al. 2006, 192).

UNOS is notorious for using procurement quotas to manage OPO budget allocation, reinforcing this OPO culture of aggressive tactics to increase donation. In response to a public comment that expressed concern about OPO metrics leading to them putting undue pressure on families, CMS stated that,

The top performing OPOs have demonstrated success in their role and responsibilities using practices that do not place inappropriate pressures on families to consent to an organ donation. We note that studies have shown that giving families sufficient time to make their informed decisions and not putting too much pressure on families results in successful consent (Centers for Medicare & Medicaid Services 2022, 18–19). 

Clearly, CMS is aware of the potential for pressure but does not hold that this is a significant issue, at least in public fora. Although CMS has the authority to decertify OPOs who exhibit unprofessional behavior, it has never done so (OPO Data n.d.). 2020 CMS rules empower regular decertification of underperforming OPOs based on procurement metrics; once decertified, the OPO’s services become non-reimbursable by Medicare and Medicaid (Centers for Medicare & Medicaid Services 2020; United Network for Organ Sharing n.d.(d)). In theory, the rationale for decertification could be extended to inadequate treatment of kin if metrics are standardized to collect performance data. Decertification based on unethical practices could, furthermore, provide justice for mistreated families outside of litigation.

Incomplete or Insufficient Conception of Brain Death by Kin

Brain death is a relatively new concept that is often alien to those outside the medical profession, including families. Although medically distinct from a persistent vegetative state, it can appear the same to family members struggling to understand the liminal state of their kin. This issue is further exacerbated by the use of terms such as ‘life support’ when referring to the physiologic support machines enabling patients to breathe without the brain stem activity required, causing “slippage” between the realms of alive and (brain) dead (Crowley 1998, 34).  The public sphere, and, by extension, families, often have a tenuous conception of brain death that allows bodies to slip between ‘alive’ and ‘dead’, leading to distress about the proposed operation.

This lack of public clarity around brain death frustrates OPO staff; one counselor expressed vexation at doctors who explain brain death to families as being alive from the neck down but dead from the neck up, giving them a false impression about the state of their loved one (Sharp 2001, 123). Cultural portrayals of brain death exacerbate this misunderstanding; for example, “when newspapers report on brain death, they regularly refer to the legally dead patients as being kept alive on life-support systems in critical condition. Such ambiguous language is the rule rather than the exception when news media report about brain death” (Younger 1996, 44–45).

An inadequate understanding of brain death by potential donor kin makes it harder to emotionally grapple with the possibility of donation and can lead families to believe that the surgical removal of organs, in the case of donation, would be the action that kills their kin rather than them already having passed away (Fox and Swazey 1992, 62; Sharp 2001, 124). Weaker comprehension of brain death is associated with a lower likelihood of donation and conversations that include a clear explanation of brain death are associated with higher donation rates (Rodrigue et al. 2006, 192, 194).

Not only does inadequate knowledge of brain death as a concept impede organ donation and cause emotional distress for families, but it also prevents truly informed consent. As Ana Iltis argues in “Organ Donation, Brain Death and the Family,” all other medical procedures (including those authorized by next of kin as medical proxy) require obtaining informed consent, rather than simple authorization. Informed consent requires the person consenting to have a clear understanding of the procedure, including the premises on which it is predicated, such as the notion of brain death. In 2012, UNOS revised donation language to prioritize authorization rather than consent, effectively lowering the bar for procurement counselors in explaining the donation process and brain death (Iltis 2015, 372). It remains to be seen whether UNOS’s successor will follow in these footsteps but, since the impetus for OPTN modernization surrounds making the system “work better for [people] on the waiting list for organs,” it is likely that there will be pressure for the new OPTN leadership to adopt policies that they believe increase procurement numbers, whether or not aggressive tactics actually improve donation rates (Health Resources & Services Administration 2023b). 

Overlooking the Living While Dehumanizing the Deceased

Medical staff and procurement professionals alike focus, understandably, on the would-be wishes of the recently deceased. Yet, in some regards, both the deceased and the family are simultaneously sidelined in favor of a focus on the recipients’ humanity. 

Although OPO counselors and medical providers encourage families to consider what the deceased ‘would have wanted’, this is concurrent to systematic dehumanization of the deceased through what Lesley Sharp terms the ‘greening of the body’. This term refers to the tendency of OPOs to represent the deceased as giving new life to recipients through imagery of vegetation and trees, where plants are pruned, grafted on, or intertwined. Although these images are supposedly imbued with meaning-making for families, Sharp has uncovered that many families outright reject these themes as dehumanizing, depicting their deceased kin as supportive mechanisms without names or life stories. It particularly erases the often brutal deaths that accompany organ donation—such as automobile accidents, suicide, and, increasingly, gun violence—while also evoking disturbing images of the grafting of limbs (Sharp 2001, 120). “The greening of the body denies death’s presence,” making it harder for families to move on (Sharp 2001, 122).

Furthermore, in addition to greening grief, the theoretical focus on the deceased may harm families, as it is ultimately the living who make the donation decision and have to live with the consequences either way. Linguists Sque and Galasinski [15] the  have studied the ‘discourses of refusal’ of kin who do not decide to donate, demonstrating how the decision is “made social through the process of narrating it” and providing us with an opportunity to glimpse the internal narratives of familial needs (Sque and Galasinski 2013, 57). 

The language used by kin centers around their lack of responsibility to donate or to ‘be a hero’; in some cases, refusal to donate comes a last act of caring for the deceased. “The refusals are constructed as focusing on those who actually make the decisions” insofar as subjects focused on their ability to live with the decision or their inability to visualize their loved one on the operating table (Sque and Galasinski 2013, 57–59, 61). Anthropologists have noted that narratives around would-be deceased donors having “suffered enough” are often veiled entreaties that the family has already suffered enough (Sharp 2006, 56). 

In the United States and other Western countries, the professional narrative centers around presumed ideas about what the deceased ‘would have wanted’ and making meaning out of their untimely death, with little attention given to the strong emotions of families stuck carrying out these supposed wishes (Fox and Swazey 1992, 33–34). There is a stark contrast between this system of thought and that of many East Asian countries, especially Japan, where physicians are unable to proceed with brain death diagnosis without family consent, even if the person registered to be a donor while alive, because of the cultural-historic emphasis on family ties in decision making (Terunuma and Mathis 2021). Although there are other issues that Japan must contend with as a result, including low organ donation rates and the resultant public health conundrum, families do not appear to be simultaneously centered (in consenting/authorizing) and sidelined (in emotions) as they are in the United States (Soyama and Eguchi 2016).

Part III: Guiding Principles for Organ Procurement Policy

The Bill of Rights for Donor Families, created by the National Kidney Foundation, states that kin have a right “to be cared for in a manner that is sensitive to the family’s needs and capacities by specially trained individuals” (National Donor Family Council 2004). As we have seen, however, families are frequently not treated with the sensitivity demanded by these situations and there is nothing in the Federal Code, CMS Interpretive Guidance, Uniform Anatomical Gift Act, or other public policy to provide guardrails for these sensitive interactions. Ideally, policy governing all OPOs would create the optimal “combination of organizational choice architecture and well-designed communication strategies” that lead to compassionate dialogue and ethical practices (Thaler and Sunstein 2021, 279).

Reasons to Improve Policy & Practice

Ultimately, I hope that my readers will agree that there is inherent good in treating people with culturally informed compassion. The circumstances surrounding the need to make a donation decision are often some of the worst of people’s lives. Since young donors are prized as having healthier organs, in many cases, people are making decisions on behalf of spouses, siblings, or even children after experiencing a horrible tragedy. It is my deeply held belief that if any situation demands compassion, it is this.

On the other side of the debate are potential recipients who are struggling without healthy organs and may die. Those with urgent medical needs are not entitled to someone else’s organs, but those grieving (who are entitled) don’t have a material need for those organs. Whose stance demands ethical preference depends on the reader’s values and belief systems. 

That said, improving the communication and consent process with donor kin (in service of kin’s needs) does not necessarily need to reduce donation rates at the expense of recipients; in fact, it may increase donation rates. We can seek a Pareto-efficient outcome [16] the  where no one is worse off (donation rates remain stable or improve) and families are better off than they were before. Research has shown that people who feel cared for throughout the consent process are more likely to donate (Rodrigue et al. 2006). Furthermore, families who consent to donate are less likely to regret their choices, so if we can increase donation rates through compassionate care, we can potentially reduce post-decision regret as well (Shaw and Gardiner 2018, 102).

The overall focus in the medical community surrounds the shortage of organs, the length of the transplant list, and the concrete definition of brain death, painting a singular picture of acceptance of donation as an intrinsic good. I would argue that this overlooks our responsibility to the families choosing to donate as the donors themselves, which is how they are viewed by some recipients (Fox and Swazey 2002, 32). Furthermore, if we follow the medical credence of “do no harm” to family-as-donor, we must first understand that their construal of ‘harm’ may differ from ours (O’Connell 1996, 22–23). Although brain-dead donor bodies cannot feel pain, the images of them being dissected and the need to “keep [them] whole” are experientially real to families (Sque and Galasinski 2013). Moreover, “what may be legally dead for clinicians may not be really dead for religious believers [...] both reality and death are analogous terms that we predicate in different ways, depending upon the specific province of meaning to which they are referred” (O’Connell 1996, 27).

How do people—societally, in the medical community, and as family-donors—conceptualize the human status of the neurologically deceased during the time after brain death declaration but before cardiac arrest (which occurs in the operating room, in the case of donation)? While brain-dead bodies await organ harvesting on physiological support, they rest in a liminal state, in some regards staying ‘alive’ for the sake of the recipient but ‘dead’ for the sake of grieving kin. Should we, as policy professionals and social scientists, accept an analytic physicalist approach that only allows room for one universal medical truth, or is it our responsibility to make space for a multiplicity of emotional truths? 

Organ donation is not inherently predicated on utilitarian ethics, but reductive metrics surrounding the unmet need gesture at a utilitarian-analytic framework. In the introduction to William LaFleur’s posthumous book, Amy Borovoy summarizes LaFleur’s concern with “the creeping logic of utilitarianism into bioethical” reasoning (Borovoy introduction to Lafleur and Drott 2022, 18). Medical writing is rife with utilitarian thinking, including the common practice by federal agencies such as the CDC and FDA imputing the “value of a statistical life” when performing cost-benefit analyses. According to The American Journal of Transplantation, the average deceased donor “gives 30.8 additional life‐years,” and those whose organs are more fully utilized provide “55.8 life-years” (Schnitzler et al. 2005). This is, of course, different from a purely utilitarian argument which, taken ad absurdum, would advocate for the creation of deceased donors by any means necessary. Rather, this utilitarian-lite approach attempts to lessen the blow of death by associating it with another’s sustenance. I do not wish to take a stance on which school of ethics to follow except to point out that a utilitarian-lite framework could have detrimental effects for everyone involved—including the pro-donation cause—if it leads to pushback from families and/or lower donation rates. 

Finally, as a separate but related motivation, there are clear racial disparities in U.S. organ donation and recipient rates. A large portion of the substandard care for Black potential recipients is due to structural racism, but some is due to having a relatively White donor pool leading to homogeneity in blood and tissue typing (Boulware et al. 2021; Jealous et al. 2020). Donation rates are currently much lower among Black deceased and next of kin than their White counterparts and increasing the number of Black donors would increase the number of eligible Black recipients (Perez et al. 1988, 554; Sque and Galasinski 2013, 55). There are many contributing factors to lower donation rates among Black communities, including OPOs dismissing them as less likely to donate and deeply rooted mistrust in the medical system (Crowley 1998, 34). By improving care for families-as-donors, we may be able to increase donation rates among Black kin and improve health outcomes for Black recipients as well.

Guiding Principles for Future Policy

By design, public policy must take a one-size-fits-all approach at the level to which we can specify the applicable constituency. As such, the following anthropologically informed policy is designed to provide a floor, rather than a ceiling, for procurement professional interactions with next of kin during the process of obtaining consent. By following what families say and do, these policies should create better experiences for families without lowering donation rates — perhaps even raising them. 

Three guidelines inform the below policy. The first guideline pertains to OPO operations, while the latter two create guardrails for OPO-family interactions. This section contains the guiding principles, and the next section includes specific verbiage for CMS to use in its Interpretive Guidance OPOs. Alternatively, HRSA could assert these guidelines on OPTN directly to use in its oversight of OPOs.

  1. Include metrics that measure the quality of OPO interactions. Further research is required to determine the precise metrics, which could be informed by ethnographic research studying family and community needs; initial suggestions might include the number of hours spent with kin, availability of grief counseling and other supportive services, and direct feedback (qualitative and numerical) pertaining to the quality of support received during the decision-making process, solicited from both donor and non-donor families. Although the quotas used by UNOS/OPTN to determine OPO budgeting are highly problematic and create misaligned incentives, they are codified in other federal guidance such that changing them is outside the scope of this proposal (Sharp 2006, 25). Instead, prosocial benchmarks may counterbalance the single-minded focus on donation rates and absolute numbers of donors with experience-based measures.

  2. Empathetically explain brain death. The exact wording should be determined by the OPO based on local needs and translated as appropriate but should include:

    1. Clear information that the patient will not recover under any circumstances

    2. Acknowledgment that this may not fit the conception of death in all cultures

    3. “De-coupling” of the explanation from the request to donate organs when possible (Sharp 2001, 117)

  3. Open dialogue by verbally acknowledging the care for their kin involved in making this decision. Expressions of sensitivity and compassion by OPO personnel are critical to increasing the likelihood of donation and improving the experience of families (Rodrigue et al. 2006, 193). Organ donation as gift-giving serves as a locus of meaning-making for surviving kin, providing them with opportunities for psychic healing as well as highly personal anguish, as “such gifts convey something beyond and other that [sic] what we think the now-dead person would have wanted” (Murray 1996, 117). By giving families the opportunity to thoughtfully engage in the donation decision and acknowledging that they are not expected to donate, counselors can enable donation as “one of the crucial, telling, and final acts with which they will accomplish that redefinition [of their relationship to the deceased]” (Murray 1996, 120). 

Ethnographic studies of local constituencies may be used to inform OPO-specific protocols and conversation guides regarding explanations of brain death and acknowledgment of care for kin.

Proposed Addendum to CMS Interpretive Guidance

The policy below follows these three points of guidance. In preparing this proposal, I reviewed five publicly available policies that discuss the approach to families, two of which were targeted at OPO counselors as the reader, and two of which were targeted at providers (LifeBanc 2018; LifeCenter Northwest 2011; LifeGift 2021; LifeNet Health n.d.; OneLegacy 2010). It is likely that many other OPOs have similar policies that are not publicly available. I did not intentionally reuse any language nor did I take any of these policies as best practice; rather, they served as inspiration and pushback for my own findings. The policy text itself is meant to reflect the guidelines outlined above.

This policy is written as an addition to the existing CMS Interpretive Guidance — or Federal Code, if deemed to go beyond the scope of interpretive guidance for 42 C.F.R. §486.342(a) — and is not intended to supersede or overwrite any other policies.

§486.342(a) To ensure that the individual(s) responsible for donation are informed of their options, OPO coordination teams, as members of the OPTN, are responsible for:

  1. Ensuring that the medical care team has provided the next of kin (NOK) with complete information about brain death prior to any request for consent to donate; 
  2. Withholding the request to donate, unless explicitly asked by NOK, until after the NOK has decided to withdraw physiologic support (defined as the support required to prevent the patient from cardiac arrest in the case of brain death);
  3. Determining, in coordination with the medical team, the expected timeframe during which the NOK can make a decision to donate without sacrificing organ quality and documenting a plan that paces the request to consent along the expected timeframe;
  4. Conducting all conversations with family in person and in a private, quiet setting to the fullest extent possible;
  5. Disclosing to NOK that they are under no responsibility to donate organs and acknowledging the gravity of the decision.

Moreover, OPTN is responsible for ensuring that OPOs adhere to the above criteria. To this effect, OPTN is responsible for creating a series of quality-driven benchmarks to systematically collect NOK-OPO interaction data. OPTN, CMS, and HRSA shall agree to these standards, which shall include measurements to examine the quality and quantity of support provided by member organizations to NOK during donation decisions. These data should be collected on both positive and negative donation decisions. Performance benchmarks will be used to inform contracting decisions for OPTN’s contractor and for the decertification of underperforming OPOs.

Throughout the donation industrial complex and supporting legislation, we see an overarching focus on the well-being of organ recipients to the detriment of families making difficult decisions and of the memories of the deceased. This falls in line with the utilitarian ethics underpinning the current organ donation paradigm, wherein the loss of one life is superseded by the gift of another. As UNOS states on its website, “Organ donation is where heartbreak and hope reconcile,” demonstrating their redemptive view of the dehumanization of donation discourse (United Network for Organ Sharing n.d.(c)). 



As a final consideration, I would like to leave the reader with the open question of informed consent. As we saw above, UNOS has been quietly advocating for simple authorization, while some scholars push back by reminding us that medical procedures require informed consent. This is, arguably, not a medical procedure for the deceased donor; furthermore, informed consent is a high bar that requires full participation from those consenting and may be unnecessarily arduous for families. ‘Informed assent’ is a relatively new idea, most frequently used regarding “do not resuscitate” orders (DNRs), that enables families to assent/dissent in direct response to the suggestions of medical professionals when there is a clearly indicated course of treatment. It alleviates some of the psychological burden when issuing DNRs so that families do not feel fully responsible for the outcome (Curtis 2012, 546–548). HHS still requires informed consent for postmortem donations of all types—is this something that could be altered to improve kin experience and increase donation rates (HHS Office of Inspector General 2001)?

Although public discourse about organ donation has been coalescing around donation as an intrinsic good worthy of a relatively single-minded objective of increasing donation rates, it has arguably not completed the transformation into truly ordinary medicine. Compassionate care for grieving families and obtaining consent to donate have been the focus of disparate fields, but, as goals, they are far from mutually exclusive. 

This is the optimal moment for CMS to add new policies to their Interpretive Guidance or HRSA to further intervene in OPTN regulation of OPOs, leveraging the momentum afforded by the OPTN Modernization Initiative and the possible replacement of UNOS after nearly 40 years of OPTN leadership. By implementing anthropologically informed policies that respect the phenomenological reality of families making one of the hardest decisions of their lifetime, policymakers and organ procurement professionals can improve outcomes for everyone involved: affording recipients a second chance at life while safeguarding the rights of surviving kin. 

*This article was edited by Andre Jimenez (Princeton University) and Aishah Winter (Brandeis University).

About the Author

Author Gillian Tisdale Headshot

Gillian A. Tisdale will graduate with her Master in Public Affairs from Princeton’s School of Public and International Affairs in May 2024 with a concentration in domestic policy and a certificate in health policy. At Princeton, she was named a Karl Edwin Prikett Fellow and a Herman M. Somers Memorial Fellow, and she is a 2024 Presidential Management Fellowship Finalist. She interned on the health policy team at the Center for American Progress where she was sponsored by the Peter G. Peterson Foundation. Before returning for her graduate studies, Gillian built a career as a market strategist in the health-care sector, most recently as the Director of Product Marketing at a technology-enabled caregiver support solution. She graduated from Smith College with a BA in Philosophy and Logic. 

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1. In this essay, I use ‘kin’ and ‘family’ relatively interchangeably when discussing those faced with organ donation decisions on someone else’s behalf. There are legal protocols outlining the order of priority regarding who can make donation decisions on behalf of the deceased, with the priority persons being spouses and immediate blood relations. (Return to Note)

2. The concept of brain death was coined by the Harvard Ad Hoc Committee in 1968 and subsequently adopted by the American Medical Association (Lock 2002, 103–104, 111; Sharp 1995, 361–362). (Return to Note)

3. Neurological death is distinct from a temporary coma, persistent vegetative state, or other liminal conditions where people are dependent on physiologic (life) support but still retain some brain function. For more on the history of brain death and its distinction from other medicalized states, please refer to Chapter 4 “Making the New Death Uniform” in Twice Dead: Organ Transplants and the Reinvention of Death by Margaret Lock. (Return to Note)

4. For example, brain death individuals have been shown to continue nail growth and heal wounds. (Return to Note)

5. To the author’s knowledge, no countries have implemented this extreme wherein the country owns the organs without providing individuals or families with the right to opt out. Some U.S. states have implemented routine removal laws for non-solid organs, such as corneas, without requiring familial notification (Institute of Medicine 2006). Presumed consent laws also veer in this direction but, as we will discuss, typically ask kin for permission. (Return to Note)

6. Social psychologists have spent much time studying this topic. Common theories of why people don’t opt out include ‘sludge’ (the paperwork and other bureaucratic hurdles required to opt out) and insufficient attention (other things matter more during daily life, influencing people to put off opting out). For more on this topic, I recommend Chapter 13 of Nudge as a primer. (Return to Note)

7. The only exception applies to unemancipated minors, who are unable to make irrevocable donation decisions if they pass away before the age of majority (Uniform Law Commission 2006, 18). (Return to Note)

8. These opaque legal distinctions further complicate the application of clinical bioethical frameworks. “Substituted judgment” — what the patient would do, if they could choose — is often applied to medical proxy decision-making; another concept in clinical bioethics, “best interests,” or what a reasonable person would do, may be more appropriate here. Yet, if the rights of the next of kin to decide whether to donate arise from property rights and the responsibility to dispose of the body, then we may have to diverge entirely from this ethical framework. (Return to Note)

9. Medicare is the health plan responsible for covering eligible seniors (age 65+ as of 2023) and persons with other qualifying disabilities, including End-Stage Renal Disease. Medicaid provides health coverage to people making below 133% of the federal policy level through federal-state partnerships, with exact qualification criteria varying by state. (Return to Note) 

10. UNOS is governed by Federal Code 42 C.F.R. §121.1-§121.13 and 42 C.F.R. §274. OPOs are responsible for adhering to 42 C.F.R. §486.301-§486.360 and 42 C.F.R. §273. (Return to Note)

11. The Code of Federal Regulations (C.F.R.) is the United States government’s logbook of all rules that have been passed by Executive agencies. Most relevant to organ donation are rules passed by the Department of Health and Human Services. (Return to Note)

12. OPO family counselors are the non-clinical staff who work with donor families and clinical counterparts (Sharp 2006, 53–54). In practice, they go by many titles, including ‘coordinator’. The term ‘coordinator’ is also used to refer to those who work with organ recipients. I avoid the term ‘coordinator’ here to avoid confusion. (Return to Note)

13. Here, I am not distinguishing between the needs of families whose consent is required to proceed with a donation and those whose deceased kin signed a donor card in his or her lifetime. As far as I can distinguish, their psychosocial needs are similar, with the caveat that those who are unable to override the decision to donate may need additional emotional support if the donation proceeds without their assent. (Return to Note)

14. “Subsequent neurological examination revealed no purposeful movements to noxious stimuli, a Glasgow Coma Scale score of 3, fixed and dilated pupils, absent gag and cough reflex, and no spontaneous respirations” (Valdes et al. 2002, 129). (Return to Note)

15. Sque and Galasinski’s research took place in the United Kingdom. Although the British system is different from the American one in terms of the consent requirements, we can loosely apply their linguistic findings to our case given the cross-cultural similarities with how families process death and grief. (Return to Note)

16. A Pareto-efficient outcome is one where all parties involved cannot be better off without at least one party being worse off. Relative to the existing system, an outcome where donation rates remain stable (thereby not affecting the outcome for OPOs and recipients) but families have a better experience (thereby improving their outcome) would be a Pareto improvement over the existing paradigm. (Return to Note)


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