Harms of Unsuccessful Donation After Circulatory Death: An Exploratory Study

Abstract

While donation after circulatory death (DCD) has expanded options for organ donation, many who wish to donate are still unable to do so. We conducted face-to-face interviews with family members (n=15) who had direct experience with unsuccessful DCD and five focus groups with professionals involved in the donation process. We used qualitative content analysis to characterize harms of non-donation as perceived by participants. Participants reported a broad spectrum of harms impacting organ recipients, donors and donor families. Harms included waste of precious life-giving organs and hospital resources, inability to honor the donor’s memory and character, and impaired ability for families to make sense of tragedy and cope with loss. Donor families empathized with the initial hope and ultimate despair of potential recipients who must continue their wait on the transplant list. Focus group members reinforced these findings and highlighted the struggle of families to navigate the uncertainty regarding the timing of death during the donation process. While families reported significant harm, many appreciated the donation attempt. These findings highlight the importance of organ donation to donor families and the difficult experiences associated with current processes that could inform development of alternative donation strategies.

Introduction

Deceased-donor organ donation is common and often desired by family members and patients with life-ending illnesses. Yet opportunities for donation are limited. Donation after circulatory death (DCD) has been used for decades to increase the number of available organs(1, 2) by expanding opportunities to donate to patients who may not otherwise qualify. This strategy is currently the only available option for imminently dying patients who do not meet criteria for brain death. However, successful donation requires potential donors to progress to circulatory death within a predetermined time frame before organ damage from hypoxia and hypotension preclude transplantation.(3, 4)

Institutional data show 27% of potential donors do not progress to circulatory death within the window specified for organ recovery.(4) Furthermore, despite terminal illness, the donation process is not even attempted for some patients as available tools predict they will not progress. While organ donation may have great benefit for grieving families,(5–7) our current system leaves the wishes of many families and donors unfulfilled and a shortage of available organs persists.

The impact on the psychosocial wellbeing of family members contemplating donation has been previously described.(8, 9) However, once the decision has been made and a strong preference for donation is established, little is known regarding the sequelae of attempted donation that is ultimately unsuccessful. Insight into the perceptions of donor families is critical to understanding the value of organ donation and the shortcomings of current donation processes. We sought to characterize the harms of non-donation experienced by family members whose loved one experienced unsuccessful donation after circulatory death and observed by professionals involved in the organ donation process. Given the exploratory nature of our research question, we employed qualitative methods using a small and purposely selected sample in order to delve deeply into ideas and uncover emerging themes within this previously uncharted terrain.

Methods

We conducted open-ended interviews with family members of patients who experienced unsuccessful DCD and organized focus groups with clinicians and policy makers to characterize and validate the harms of non-donation described by participants. The University of Wisconsin (UW) Institutional Review Board approved this study and granted a waiver of signed consent for the interviews and exemption status for focus groups.

Participants

Working with our regional Organ Procurement Organization (OPO), we identified family members who had experienced unsuccessful DCD of a loved one in the preceding five years. We excluded family members who were estranged from the potential donor, younger than 18 years of age, non-English speaking, or located beyond driving distance of the study site. We also excluded families whose loved one had died in the past 6 months.

We sent an opt-out letter from the OPO cosigned by members of the research team to the surviving family member most intimate with the donation process (n=55). Research staff telephoned individuals who did not opt out to invite them to participate in a face-to-face interview; eight refused participation. We purposefully sampled participants to maximize variability based on socio-economic status, age, gender, relationship to donor, and donor race/ethnicity.

After completing interviews with donor families, we conducted focus groups with individuals involved with the donation process as part of their professional roles. We selected participants from attendees at five national specialty society meetings. We emailed all conference attendees, requesting individuals with direct professional experience with organ donation. Focus group participants were offered $200 for participation. We purposefully sampled respondents to ensure variability in practice location, gender, and years in practice. We contracted with the UW Survey Center to employ Dr. Kenneth Croes, a PhD anthropologist with no prior experience with organ donation or transplantation, to conduct interviews and focus groups. All interviews and focus groups were audio-recorded and transcribed verbatim, redacting all identifying information.

Interview Guide and Focus Group Script

We started each interview asking family members to share the story of their personal experience with organ donation. The interview guide included a deliberative briefing(10) to clarify the distinction between brain death and circulatory death to ensure all respondents were aware of the distinction and correctly referring to the same process. (Table 1) We then posed a series of open-ended questions based on three domains: stories of attempted donation, knowledge of current donation practices, and opinions regarding hypothetical donation strategies. On review of the first two interviews we found that the questions did not allow respondents to abstract beyond their personal story of grief and sadness, hindering their ability to respond to broader issues related to organ donation. To address this, we modified the guide by including hypothetical vignettes. These changes allowed us to learn more about respondents’ beliefs regarding organ donation in general.

Table 1.

Deliberative briefing card given to interview and focus group participants

Donation after Brain Death (DBD) Brain is determined to be dead based on official brain-death criteria, and the heart is still beating up until just before the organs are removed Donation after brain death is more common than donation after circulatory death Donors can typically give all organs including heart, lungs, liver, and kidneys

Donation after Circulatory Death (DCD) Brain is very damaged but the donor has not met all the official brain-death criteria Doctors stop life supporting treatments and wait until the heart stops beating before they start removing the organs Organ donation not always possible because the heart keeps beating for a long time after life support is stopped Donors can typically only give liver and kidneys. Other organs (lungs, pancreas, small bowel) are possible, but this is unusual The liver and kidneys are often of lesser quality than those provided from officially brain-dead donors

We designed the focus group script to target participants’ professional experiences with unsuccessful DCD. We asked participants to describe patients and families with whom they had worked and then transitioned to hypothetical vignettes similar to those in the interview guide. After offering these scenarios, we presented quotes from family-member interviews describing their experiences with unsuccessful donation and solicited reaction. As is customary for qualitative research, data collection and analysis occurred simultaneously, enabling us to use feedback generated during coding and analysis to improve the interviewer’s technique and prompt additional questioning on emerging themes and trends.

Analysis

We used qualitative content analysis(11) to analyze written transcripts. First, four experienced coders from our research team with different professional backgrounds including surgery, public health, biological sciences and bioethics independently analyzed each transcript using an inductive strategy. Using NVivo software (version 10, QSR International-Melbourne) to catalogue coded transcripts, at least three investigators met regularly to adjudicate each code to achieve consensus and explore disagreement. We used this process to facilitate higher-level analysis and further characterize harms as reported by family members and witnessed by stakeholders. In addition, we made construct tables to organize and expand major themes related to the harms of unsuccessful donation, ensuring maximal fit and faithful data representation. The combination of individual interviews and focus groups provided data source triangulation.(12) We compared focus group data to the themes we identified from the interviews. This process enhanced the rigor of our analysis by allowing us to corroborate and add depth to the observations attained from family interviews.

Results

We enrolled 15 family members and audio-recorded 12 in-person interviews; in three interviews family members participated together. The age of potential donors (n=12) ranged from 18 to 64 years and all had suffered serious brain damage due to a range of causes, including cerebrovascular event (5) and trauma (2), but did not meet criteria for brain death. Respondents included parents (7), spouses or domestic partners (4), siblings (2), child (1) or aunt (1) of the deceased. Most respondents were white and Christian, consistent with the demographics of the population served by the UW OPO. (Table 2) Based on age and zip code (as a proxy for household income) eligible participants who were not interviewed did not vary significantly from those selected for interview. Table 3 describes characteristics of focus group participants.

Table 2.

Interview participant characteristics (n=15)

Characteristic	n (%)
Age
<50 years	3 (20)
50–65 years	8 (53)
65–80 years	4 (27)
Male gender	6 (40)
White race	14 (93)
Education
High school diploma or equivalent	3 (20)
Trade school	2 (13)
Some college	1 (7)
Associate’s degree	3 (20)
Bachelor’s degree	3 (20)
Master’s degree	3 (20)
Christian religion	14 (93)
Household income
<$40,000	3 (20)
$40,001 to $55,000	2 (13)
$55,001 to $75,000	5 (33)
>$75,000	3 (20)
Unknown	2 (13)

Table 3.

Focus group characteristics

National Meeting	Number of participants
American Society of Transplant Surgeons	9
Society of Critical Care Medicine	8
American Academy of Hospice and Palliative Medicine	9
United Network for Organ Sharing	6
Society of Critical Care Anesthesiologists	4
Participant characteristics (n= 36)
Average years experience (range)	17 (3–42)
Male gender, n (%)	23 (63.9)
Race
White	27 (75.0)
Black	2 (5.6)
Asian	5 (13.8)
American Indian	1 (2.8)
Middle Eastern	1 (2.8)
Average DCD donations participated in per year (range)	8 (0–100)
Geographic region, n (%)
East	9 (25.0)
Midwest	14 (38.9)
West	5 (13.8)
South	7 (19.5)
Unknown	1 (2.8)
Physician, n (%)	31 (86.1)

Families described a broad spectrum of harms associated with unsuccessful donation which were reinforced by focus group members. These harms included waste of precious organs, lost opportunity to honor their loved one and an inability to harness comfort from donation to ease their grief. Families also empathized with the loss experienced by potential organ recipients. (Table 4)

Table 4.

Harms of unsuccessful DCD as reported by donor families

Harm	Representative quotes from family members
Waste Inability to use life-providing organs to benefit someone else Loss of high quality organs Inefficient use of hospital resources	People could have been saved…potentially there was people that died, because his organs weren’t able to be donated. And all the other people that could have had a quality of life. It’s even harder, I look at, my husband was thirty-eight when he passed, so his heart was strong, you know?…those are organs you would want. It was just like, this amazing wonderful thing that was going to happen, which never happened. So then, it was, we felt like we let down everybody that came, like it was a wasted trip for them [transplant team].
Inability to honor the donor Failure to fulfill the donor’s wishes Missed opportunity to validate their loved one’s admirable characteristics	I didn’t want to wait until things started to fail and that we were past the point where he would actually be able to donate his organs, because it was, basically, my last chance of giving his last wish or upholding that. …the one thing he [donor] wanted to do most with his life – and it would’ve been something that I know [donor] would love to have done, because, like I said, he had a pretty tough life. And this was the final thing that I think would’ve made him happy.
Struggle to find meaning Inability to find a silver lining Donor does not “live on”	You would have felt like she kind of died with a purpose. …being able to say, ‘but look at the people he helped’ or maybe hearing their stories, or seeing that they’ve lived, and moved on, and they have that quality of life, and hearing from the family just how it helped them, I think that almost lessens your pain, and lessens your grief, when you realize, OK, you’re going through this, but there was that silver lining…So I think that, because he wasn’t able to donate, I think it’s harder for my children and I, and it will be. In my heart he would’ve lived on, because part of him is keeping somebody else alive. So therefore he’s not completely, totally gone. He’s still – because he’s keeping someone else alive, therefore, he’s still alive.
Disrupted bereavement Agony of waiting for loved one to die Prolonged closure due to uncertainty of donation outcome Doubt regarding decision to withdraw life-supporting treatments	So everything just kind of prolonged the agony of this whole situation. Because we knew it was hopeless yet we waited and waited and waited. For me, if someone were to say, ‘OK, we’re going to do the surgery and then we’re going to be done. [Donor] will die’ That I didn’t have to sit there and watch her die. I could have just kissed her. I could have said goodbye. I could have walked out and they could have harvested her organs and it would have been over. He didn’t pass within those three hours, and it was actually another three hours after that before he did pass and I’m going…did we take that life support off when it wasn’t his time to go?
Loss for the recipient	I was thinking that this person is going to be very fortunate. This person is waiting. Waiting in anticipation of, you know – their life can be made whole, or they can go on with their life. And it was a match. I find out they said it was a match and I guess that was part of the let-down, because now this person just didn’t get it. Now, you picture yourself – you’re waiting for something, and this is life-threatening. You’re waiting for something and it didn’t happen. …it’s not just the person who needs the organ, it’s the family. They’re probably on a roller coaster up, and now ‘Oh he’s getting it again. Oh, he’s not. Yeah he is, no he’s not.’ And it’s just, they don’t need to go through that.

Waste

Families described inability to donate as a “total waste,” specifically noting that viable, healthy organs went unused. Families saw extraordinary value in functioning organs that the donor no longer needed. Because of their intrinsic vitality, organs were precious and cherished; others needed them to sustain life. One family member explained, “somebody out there needs a liver, their life is going to end if they don’t get this liver.” Families were clear that while organs were priceless to recipients, they had little worth to the donor. As such, the inability to recover these organs signified profound misuse because “Why would you put good organs in the ground when someone could use them?”

The perception that unsuccessful donation disposed of particularly high-quality organs augmented this sense of waste. Families highlighted the donors’ youth and overall good health as a reflection of organ quality and value, noting, “…that’s a good strong heart, those are good strong lungs, those are things that, you know, could really benefit somebody.” They emphasized special attributes, such as athleticism, “really good vision,” or decision to quit smoking that contributed to organ quality and in some instances compensated for the donor’s less desirable lifestyle choices, for example past addictions or poor diet. Some families were distressed that waiting for circulatory death could harm organs during recovery, for example, “I just think it was a waste…– that they waited. They could have took them right away when everything was good” and characterized these compromised organs as “faulty parts” rendered “damaged and no longer useful.”

Family members also viewed unsuccessful donation as a waste of time and health care resources. Families focused on the considerable expense involved in mobilizing personnel and supplies to prepare for procurement that ultimately was not successful, noting “the whole organ procurement team [was] wound up for nothing.” Some families expressed responsibility for the transplant team “go[ing] home empty handed,” for example, “I felt like we wasted their time and money, by flying all those professionals there and waiting.”

Inability to honor the donor

Families experienced unsuccessful donation as a failure to honor the donor’s wishes. They described donation as their loved one’s “last life decision,” emphasizing the importance of the donor’s agency to determine what would happen with his/her organs. Interestingly, this conviction existed whether the donor’s desire to donate was well-known to family members or newly discovered on a driver license. While families acknowledged the donor’s independent permission and desire to donate, they recognized that success required their assistance: “He wanted to be an organ donor and I had to decide whether or not to take the life support off of him.” Families were reassured by the donor’s autonomous wishes but reported remorse and incapacity related to their responsibility to ultimately fulfill this wish.

Families described a lost opportunity to bear witness to their loved one’s admirable traits. Donation had “inherent nobility;” it was a chance to validate the donor as compassionate, selfless and “big-hearted.” For some, donation reflected values exemplified by how the donor lived, for example helping others or becoming an Eagle Scout. Other families described hardships their loved one encountered during life – drug addiction, mental illness, or getting caught up with “the wrong crowd.” Despite these struggles, families believed in the genuine goodness and generosity of their loved one. Donation was a means to show these virtues to others and even to the donor him/herself. One mother noted her son “always struggled with self-esteem…and I thought this [organ donation] could be, finally, something he’d be really proud of.” In this sense, families perceived harm specifically to the donor that persisted after death.

Struggle to find meaning

For some families, unsuccessful donation heightened the pain of an already devastating loss. Successful donation – specifically the ability to improve the lives of others – represented a “silver lining” during an event that was heartbreaking. Families hoped to generate meaning and purpose from tragedy and sadness by supporting the life of a recipient. One parent noted, donating “would’ve been…doing something good out of something horrible.” Family members believed donation would yield a sense of accomplishment and purpose. They saw it as a way to cope with sorrow and imagined that “hearing from the [recipient] family just how he helped them, I think almost lessens your pain, lessens your grief.” They were bereft after unsuccessful donation, noting, “[he] was gone and nothing good came of it;” they had suffered a sudden, previously unimaginable tragedy and “nobody else was able to benefit.”

Families desired comfort from knowing their loved one “lived on” in another person. For some, this was an abstract notion referring to the donor’s generous spirit that “continue[s] on by being able to help someone else.” Others found solace in the physical living presence of their loved one supporting the life of another, as if the donor was not completely gone. Giving life to the recipient meant that the donor is “going to be out there, he’s still going to be part of my life.” One parent commented, “It would be wonderful to have somebody living on with part of [donor] living…just having those same two words in the same sentence, ‘Our dead son’s organs are living.’ That’s a big thing.”

Disrupted bereavement

Families felt the DCD process was distressing when donation ultimately did not occur. Specifically, they reported “prolonged agony” waiting for their loved one to die, not knowing if this would occur within the window necessary for donation. One family member described waiting in the operating room as “the longest hour of my life…it was horrible, you know, it was a room full of people waiting for him to pass and waiting for this opportunity and trying to will it to happen.” Another noted that, “We had a lot of waiting and a lot of hell for nothing.”

Before life-supporting treatments were withdrawn, many families believed that their loved one was already dead. For some, death occurred at the time of the initial injury, while others acknowledged that the donor’s heart continued to beat but their loved one’s “soul wasn’t there, I didn’t feel him there anymore.” Although the precise timing of death was ill-defined, these families had resolved that the life of the donor was over prior to the donation attempt. As such, it was upsetting when their loved one returned from the operating room ‘alive.’ A daughter recalled, “How many times do I have to say goodbye?” as she described how her father returned to his hospital room.

For a few families, uncertainty regarding the timing of the donor’s death caused them to question their decision to withdraw life-sustaining treatment. Specifically, failure to die within the window necessary for DCD raised doubts about whether they “gave up on him too early.” Families struggled to interpret the implications of unsuccessful donation and worried this outcome implied their loved one might have survived with additional treatment. One family member noted, “There was a little bit of, What if, you know? What if he’s not as bad as they say?…what if it’s a possibility that he could recover?…What if we should be leaving him on life support?”

Although we briefed respondents about the difference between DBD and DCD, confusion persisted for some. One wife questioned, “Do they consider my husband brain-dead?” A few were surprised to learn that their loved one did not meet “official” criteria for brain death and that there were two different processes for donation. They struggled to understand these distinctions because they perceived that the donor was “pretty much braindead anyway” and had little chance at any meaningful quality of life. However, one respondent interpreted this as evidence there was a real chance for recovery, questioning, “So, if he wasn’t brain-dead, does that mean that with his heart still beating he could’ve survived this?”

Loss for the Recipient

Beyond their own grief, families believed unsuccessful donation harmed potential recipients. Donor families were aware that specific patients had been alerted about organ availability. They expressed empathy for these recipients with whom they shared a common goal, noting “there are two families involved in this” and “the worst part…was the other family…was hoping for those organs and they got let down [too].” Some families were saddened by the loss for a real patient whom they envisioned was “prepped on the other table…across the hall from our room…probably right through the sound wall.” Donor families were troubled that recipients would now have to continue on dialysis or die from liver failure. Others noted more generally that there was an emotional toll for people “lined up and ready” on the transplant list who must similarly be “crushed” and in “agony” from having to continue their wait.

At least they tried

Although many families registered real harms, a few saw the process as inconsequential in contrast to the death of their loved one. For these families, shock and grief about an abrupt and traumatic loss far overshadowed the disappointment of unsuccessful donation. For example, “my dad was dying, you know, and that was more the concern than anything.” For others, the attempt to donate was meaningful even if ultimately unsuccessful. While these families also clearly felt the harms of non-donation these harms were worth the benefits of trying because, “We tried, it didn’t work. It’s better than not trying” and “Sad, but on the other hand, it was a wonderful thing. The intentions were there.”

Professional stakeholder observations

Focus group participants confirmed the sentiments reported by donor families, describing harms they had witnessed (Table 5). Specifically, participants had seen families struggle to navigate uncertainty around the timing of death because “Some people react in this…startled, unprepared way. Like they had said their goodbyes, and then they have to say hello again.” They worried that the ambiguity created by attempted donation “prolongs closure” and made it difficult to start grieving.

Table 5.

Harms of unsuccessful DCD as reported by professional involved in the donation process

Harm	Representative quotations from stakeholders
Waste	You are not maximizing the functionality of the organs you’re retrieving just because the process is slow.
Inability to honor the donor	I feel there’s a sense of disappointment, and I think they kind of suffer that loss all over again, in a sense, because they weren’t able to honor their loved one’s wishes
Struggle to find meaning	My experience has been that it’s very difficult, because…at that point It [donation] becomes…the only positive thing they were able to get out of that, you know, catastrophic scenario was taken away from them. It puts people through hell…A lot of them have to come to grips with this as like, you know, as like the one saving grace of his horrible situation is that they’re going to be an organ donor. And then they don’t in more than half the time.
Disrupted bereavement	There’d be a lot of sadness, because…there’s just no closure, and there’s a lot of confusion about what happens next.
Loss to recipients	When anybody donates a kidney, it doesn’t necessarily physically benefit that person. It benefits the person to whom the kidney is given.

Focus group participants highlighted donor families’ disappointment, noting that unsuccessful donation represented a second loss in addition to the death of their loved one. This loss was related, in part, to a missed opportunity to make sense of their sadness. One participant said, “[families are] trying to add meaning – meaning to a death with the organ donation, and that avenue of adding meaning was taken away.” Focus group participants took responsibility for contributing to this second loss by promoting donation as something positive during their discussions with donor families. They worried they had generated hope that caused families further disappointment when they discovered donation was not possible. One intensivist acknowledged that “we as a healthcare system might create the expectation that…you’re going to donate organs, or this is going to be some sort of redemptive thing…and then we take it away.”

Stakeholders believed only family members suffered the harms of non-donation. As for the donor, participants felt that “removal of his kidney is not for his benefit. He doesn’t know. He’s dead, or near dead, or soon will be dead.” Furthermore, focus group respondents noted the family’s grief related to unsuccessful donation was minor in comparison to the tragic death of their loved one. One participant described, “No matter what, it’s just this gaping wound, and their heart has been shattered. They’re in another trajectory. Their lives have been changed forever no matter what the outcome [of donation] is.”

Discussion

For imminently dying individuals who desire donation, unsuccessful DCD is associated with real harm as experienced by family members and confirmed by professionals who care for them. Families acknowledged a tremendous waste – not just in terms of hospital personnel and resources – but of life-giving organs, and lamented this waste for potential recipients. Furthermore, donation offered hope amidst tragedy and a chance to have the donor live on in a way that might ease the grieving process. Focus group participants corroborated these reports and believed unsuccessful donation might intensify heartbreak experienced by families. Despite these harms, many families did not regret attempted donation.

These findings demonstrate loss in the utilitarian sense of suboptimal use of resources, but also deeper damage to families with regards to sense-making and bereavement. Importantly, harms of unsuccessful organ donation reveal substantial value of donation, not just for family but to the donor him/herself. These observations have significant implications for organ donation and recovery.

For potential donors and their families, these findings characterize deep and meaningful benefits of donation that extend beyond simple contribution to the transplant endeavor. Families, resolved in the imminent death of their loved one, were dismayed by the loss of high-quality organs that held tremendous value due to scarcity and the capacity to profoundly change and promote life for the recipient. Donation would celebrate the character and life of the donor, yet, for families, non-donation signified a failure to enact the donor’s autonomous wishes and attest to his or her noble characteristics. Although focus group respondents believed the harms of non-donation were limited to family members and did not impact the donor (who was dead), this assumption neglects the essential value of donation to donors themselves.

Donor families also viewed successful donation as a way to generate meaning from an otherwise senseless death. Specifically, non-donation was a missed opportunity to tell a story whereby a recipient derived an enduring, life-changing benefit from their personal loss. Such notions are consistent with modern grief theories that emphasize “sense making” and “benefit finding” to assuage the heartache of bereavement.(13–15) Donor families aimed to create meaning with a coherent narrative to explain why tragedy occurs in a world that is congruent with their values and beliefs.(16, 17) This finding suggests deep-rooted cultural support for organ donation as a highly respected and admirable endeavor. It also confirms prior research establishing donation as something positive to derive from heartbreak(5, 6) and documenting solace for families knowing these organs helped another human in distress.(7)

Our results highlight the tension between the desire to donate and the preservation of public trust entrenched in current organ recovery strategies. In particular, residual confusion about the distinction between DCD and DBD speaks to the challenges families face navigating the dying process in the absence of “official” brain death. In our study, many families had resolved that their loved one was in some ways “dead” prior to initiation of DCD procedures, despite awareness that the donor’s heart was still beating. As such, return from the operating room after unsuccessful DCD was jarring and forced families to wrestle with the notion that the donor was somehow not dead yet. Furthermore, the inability to secure donation conflicted with their belief that the donor’s brain was so damaged that a life worth living was not possible. Criteria for DBD are designed to draw a clear line between life and death and serve to protect the public trust that the lives of countless transplant recipients depend on. Yet the distinction between DBD and DCD may be difficult for families to appreciate(18) and public beliefs regarding the determination of death in the context of organ donation are commonly misinformed.(19) While the boundaries around who is “officially dead” serve to support organ donation, our findings reinforce the hazards of this ethical tension and the consequences of this recovery strategy for those who are imminently dying and have expressed desire to donate.

This study is strengthened by the combination of interviews to capture the perspectives of local donor families and focus groups whose respondents reflected a broader national perspective. The focus group data allowed us to add depth to our results and confirm the interview findings. Furthermore, a qualitative approach offers critical insight for policy makers due to the rich description of context and exploration of a range of viewpoints rather than a single dominant theme. Although this methodology enables deep understanding of patterns and perspectives of participants, it does not allow for statistical inference about prevalence of these views. As such, we did not present numerical data with respect to the frequency of reports within each construct and theme presented. Rather, our results describe typical constructs, meaning that at least half of participants shared these views. We highlighted variant viewpoints with qualifiers such as “a few” or “one”, as is common practice in qualitative research. We acknowledge that our sampling strategy for family members is bounded by a single geographic region and may present views that are unique to the relatively homogeneous population of the upper Midwest. Although we purposefully selected participants from a list of respondents to maximize demographic variability within our sample, response to our initial invitation was voluntary and susceptible to oversampling of individuals with strong feelings about organ donation in general or DCD in particular.

Conclusion

Unsuccessful DCD donation has real harms for surviving family members, potential recipients and the donors themselves. These harms both interrupt the grieving process and demonstrate the significant value of donation as a culturally desirable action. Understanding the impact of non-donation for people with life-ending illnesses may inform improvements for current donation procedures and highlight opportunities for donation beyond existing practices.

Abbreviations

DCD

donation after circulatory death

DBD

donation after brain death