Family and Transplant Professionals' Views of Organ Recovery Before Circulatory Death for Imminently Dying Patients

A Qualitative Study Using Semistructured Interviews and Focus Groups

Christopher J. Zimmermann; Nathan D. Baggett; Lauren J. Taylor; Anne Buffington; Joseph Scalea; Norman Fost; Kenneth D. Croes; Joshua D. Mezrich; Margaret L. Schwarze

Disclosures

American Journal of Transplantation. 2019;19(8):2232-2240. 

In This Article

Results

Professional stakeholders believed donation of all organs before circulatory death for imminently dying patients was murder for which consent was impermissible. However, some professionals believed single kidney donation before death was permissible. Family members were not bound by these concerns and typically supported donation before circulatory death (Table 3).

Professional Stakeholders' Concerns About Participating in Donor Death

Participating in all-organ recovery before circulatory death was not an arrangement that any professional stakeholder could entertain, even when presented with support for this procedure from family members who had experienced failed donation. Although the patient's death was imminent, removal of all organs would cause death—not the underlying injuries, nor the decision to withdraw mechanical support.

Professionals emphasized procedural aspects of organ retrieval to demonstrate how recovery was a deliberate act of killing a human, "this is the ultimate harm. You are taking an action to stop a life…I mean, there's a knife involved here and a clamp, and I can't see how we could write a policy that would ever cover for that scenario." They considered physicians and other participating professionals as willful agents effecting the patient's death. For example, anesthesia was an "act of euthanasia" and "[this] translates into a significantly unethical situation when you're actually physically providing anesthesia for something like that." Policymakers believed the moment of death defined by recovery procedures rendered their (more remote) involvement immoral, "Well if they're not [dead], then when are they declared, when you cross clamp? When you cross clamp the heart, is the, that would be the time of death? Intentional? Yeah. Then it's murder."

Respondents were less firm about removal of a single kidney before circulatory death. They noted the donor would survive nephrectomy and die from withdrawal of life-sustaining treatments. This distinction in agency for the donor's death was critical to their view that recovery of a single kidney was morally acceptable. Some worried nephrectomy could cause death indirectly from anesthesia or renal insufficiency, yet even this event did not invoke concerns about murdering or killing the donor. Most surgeons and some critical care specialists noted single kidney donation would not change the course of the donor's life. To them, hastening the donor's death seemed inconsequential as the donor was destined to die.

Informed Consent

Professional stakeholders debated whether consent for any donation before circulatory death was permissible. Some suggested that with First-Person Authorization organ donation was less objectionable but they saw pitfalls in this strategy. One respondent worried about reliance on checking a box, years earlier, at the Department of Motor Vehicles office for such a dramatic procedure. Others argued the "organ donor" designation on a U.S. driver's license becomes active upon death and could not apply when the donor was not yet dead. Even if a donor had met previously with a physician to consent, respondents were uncomfortable, fearing instability of preferences over time.

Respondents questioned the validity of surrogate consent. Many believed this was unthinkable, particularly for the donation of all organs, "But how do you have an informed consent conversation with a family saying, well, we're going to, like you said, we're going to kill them or murder them or whatever?" Although respondents debated a variety of strategies, ultimately, they discarded the notion of consent for recovery of all organs before circulatory death because they believed the procedure was impermissible regardless of the clarity of the patient's wishes.

Respondents' concerns extended to surrogate consent for donation of a single kidney, although there was more variability across groups. For example, several palliative care clinicians were hesitant about the absence of a face-to-face discussion with a conscious patient, whereas surgeons found surrogate consent acceptable. For example, "families consent to all sorts of invasive and surgical procedures as surrogate decision makers all the time, so I don't know that there's actually any regulatory barrier to doing this." One policymaker suggested this might be permissible, only if the patient's family initiated the request for recovery.

Professional Obligations

Respondents from critical care and palliative care expressed contrasting views about their role in all-organ donation before death. Palliative care clinicians worried that participating in the care of this patient was unethical, "I have to be able to sleep at night. I don't think I could sleep at night…I wouldn't be able to be part of that treatment team. I'd have to sign off." Their job was to comfort dying patients and support family. They worried that if their patient was to donate all organs and die in the operating room, their efforts would be construed as "support[ing] an organ for the sake of having an organ [for donation]," which was reprehensible. In contrast, some critical care clinicians were untroubled caring for a patient before donation: "my role as an intensivist really wouldn't be part of it, because I would be taking care of the patient the way I normally would until someone else took them to the OR and killed them."

Respondents had different concerns for single kidney donation. One surgeon explained the distinction of duties between DCD and living donor donation. In DCD, surgeons prioritize the health of the organ recipient, whereas in living donor donation surgeons prioritize the health of the donor. In donation before circulatory death, these duties are at odds, depending on whether the patient is perceived as living or (almost) dead. Critical care respondents noted this tension between optimizing the patient's kidney for donation and supporting the patient's well-being.

Social Costs

Respondents worried recovery of organs before circulatory death would garner negative public opinion: "Well, I just, I don't see how any news organization out there…could ever put a positive spin on…taking all organs prior to death with the knowledge that the OPO stopped the heart of a living person." Respondents feared positive donation stories would be overshadowed by sensational reporting highlighting retrieval of organs from someone not legally dead. Many worried donation before circulatory death could cultivate misperception that patients receive inferior health care to increase organ availability (Table 4).

Respondents feared loss of public trust could decrease organ availability with current recovery practices. Reflecting on DCD acceptance, respondents worried that attempts "to push the DCD envelope actually risks…the mainstay of how…we're transplanting" and would decrease DBD and DCD donation. Some worried people would not sign donor cards because of fear of donation before circulatory death, compromising "all avenues of donation."

Who Decides?

Professional stakeholders saw themselves as guardians of a clear, bright line between dead donors and disqualified donors, with obligations to uphold this safeguard. For example, "the way we've defined organ donation right now is that the patient has to be clinically dead, either by brain death or by cardiac death, for us to consider them donors." They stressed the importance of externally defined, inviolable criteria from a governing body or consensus group. One respondent said, "I would kind of want to know like where do you draw the line, like who's watching you to make sure you're not doing something really ethically wrong? …like who's monitoring this to make sure no one is taking advantage?" Respondents were more concerned about the need for a clear line than where the line was drawn. They believed precise definitions were important and did not want clinician judgement involved in decisions about recovery. "Like we've set it up so that we know what brain dead is, and we know what DCD is, and we're absolutely sure about it…what if it's a grey area? What if it's a persistent vegetative state? What if it's something that doesn't meet those criteria?"

Donor Families: Consideration of all Organ Donation

Family members of people who experienced failed DCD donation were typically permissive of donation of all organs before circulatory death. Most found the procedure acceptable, even when reminded that the patient had not met legal criteria for brain death and all organs would be removed with the heart still beating. This was justified for a variety of reasons related to their experience: they had accepted their loved one would die, regardless of donation; they considered their loved one brain dead or, "pretty much brain dead anyway"; and they believed that failed DCD was a waste of life-saving organs. Many family members did not see all-organ recovery as the cause of the donor's death. One family member stated, "it wasn't him donating organs that caused him to die…I wouldn't have a moral issue with that, because I wouldn't blame the organ donation on the cause of death, it would have been whatever came before that." A few were unsure or opposed, echoing concerns of professionals that organ recovery before circulatory death was murder, for example, "that's just too drastic. That's too—that's putting your, you know, you're taking a life. That's—you're taking her life. We don't have that right." Another was troubled about physicians' conflict between their fiduciary duty to the patient and desire to assist a recipient: "I would not like to see that become standard procedure. The reason being is because that's too wide open to—harvesting for a need versus respecting the person that's there…I would like to believe all doctors are moral and ethical, but they're not…They're humans, just like anybody else…I could see a margin of error. I could see problems."

Donor Families: Consideration of Single Kidney Donation

All but two family members considered kidney donation before circulatory death permissible, even if the donor died during nephrectomy. Contrary to agency concerns expressed by professionals, family members perceived this differently: "Morally, I'm sure removing her kidney is not what took her life. If her heart stopped, that's the way it was meant to be." One felt death during nephrectomy was an acceptable risk: "Well, that's obviously…could be one of the outcomes, right? Do you think I would hold the doctors responsible? No…because that's the risk, right? It's always a risk whenever you operate, right? But in my scenario we're really saving somebody." Family members advocated for at least single kidney recovery because the act of organ donation was important to them and rules about death by neurologic criteria and DCD had deprived them of this opportunity. For example, "Everybody in that room was praying for him to pass, and I think that goes into that, we didn't want him to die, we wanted him to be able to give life, and that was taken from us." One family member held a distinctly different view for single kidney recovery, reaffirming boundaries described by the dead donor rule, "I think, with them it'd have to be brain dead or, you know, you can't take the organs until he's dead, or his heart stops."

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