Organ transplantation saves lives and improves quality of life for patients with end-stage organ failure.1 However, substantial shortfalls exist in the number of organs available for transplantation.2,3 In 2018, over 4,300 Canadians were awaiting an organ, of whom 223 died waiting.4 In Canada, over 80% of transplanted organs are from deceased donors.4,5 Consent for organ donation depends on public support and a willingness to donate.6 A recent survey found that while 90% of Canadians supported organ donation, only 20% were registered organ donors.7

In Ontario, organ donation registration is a free and voluntary process available to individuals aged 16 years and older.8,9 A registered wish to donate is legally valid consent following death.9,10 Nevertheless, it is accepted practice for healthcare providers (HCPs) to seek authorization for organ donation from substitute decision-makers (SDMs), often members of the deceased donor’s family but can be legal guardians and attorneys of care, to document this consent to donate. Reasons for this include the belief that initiating organ donation on a registered donor without explicit authorization may increase family distress.10,11,12 Seeking family authorization, however, permits SDMs to veto the deceased donor’s registered wish to donate, a decision known as “family veto”.6 Family veto represents a legal and ethical conflict between respect for the deceased donor’s wishes and those of the SDM.6,10,13,14 According to the Trillium Gift of Life Network (TGLN), family veto occurred in 15–20% of registered approaches for organ donation in Ontario over the past three years. In 2019/2020, there were 72 family vetoes, representing a loss of up to 250 potential transplant opportunities (TGLN, e-mail communication, July 2020).

Researchers seek a better understanding of family veto, which involves multiple stakeholders including Organ and Tissue Donation Coordinators (OTDCs) who facilitate the organ donation process.15 Organ and Tissue Donation Coordinators work at the nexus of family veto, with professional responsibilities including identifying potential donors, assisting physicians to declare brain death, introducing organ donation to SDMs, completing donor assessments for organ retrieval and following-up with SDMs after retrieval.16 Yet the perspectives of OTDCs are largely absent from the literature. The objective of this study was to examine the experiences of OTDCs who work with SDMs who vetoed a deceased donor’s legal consent for organ donation. Findings will illuminate the underlying processes surrounding family veto and increase knowledge about family authorization in Ontario.

Methods

A qualitative study was conducted using semi-structured focus groups with TGLN OTDCs in Ontario, Canada. An interpretative phenomenology approach was employed to explore OTDCs’ lived experiences with family veto through in-depth and rich accounts of their personal narratives.17 Focus groups are effective for collecting rich, insightful and synergistic data through interpersonal interactions,18,19 and can be used effectively within a phenomenology approach.20 A small participant group is recommended in this context to illuminate individual experiences, with the ideal sample size ranging from five to eight participants.19,20,21 Institutional research ethics was approved by the University of Toronto Research Ethics Board (May, 2019).

Participants

Participants were recruited based on their knowledge of family veto. Inclusion criteria were i) working as an OTDC at TGLN for a minimum of six months, and ii) self-reported experience with family veto. All eligible OTDCs (n = 48) were informed of the study via a recruitment email from TGLN and were asked to contact the study team if interested. The study team telephoned interested OTDCs to confirm eligibility and obtain verbal consent. Written consent was collected in-person from all participants prior to commencing the focus groups.

Data collection and analysis

A semi-structured focus group script was developed by the study team based on existing literature, clinical and research experience, and feedback from TGLN administrators. Two facilitators trained in qualitative methodology conducted the focus groups, each lasting approximately 60–90 minutes to elicit rich, insightful data from participants. Focus groups were audio-recorded, transcribed verbatim, and de-identified. Three study team members independently coded the transcripts using NVivo for qualitative data management.22 Study team meetings were held to facilitate interactions that represented a hermeneutic interpretative process of analysis.23 For example, a textural description of participants’ experiences was written to summarize the essence of the phenomenon; this was shared and compared within the study team and reflexive discussions deepened understanding and interpretation of the phenomenon.24,25 Themes emerged through team consensus and were further refined through collaborative and reflexive engagement.24 This process was completed iteratively until thematic saturation was reached.26,27 Additional focus groups were not conducted as thematic saturation represented a rich understanding of participants’ shared lived experiences.28,29

Results

Two in-person focus groups were conducted with a total of ten TGLN OTDCs from across Ontario: one focus group each of OTDCs from hospitals within and outside the Greater Toronto Area. Participants were all female with at least four years of nursing experience and represented diversity across age, number of years employed at TGLN, number of years as an OTDC, and location of practice (Table 1). Four primary themes emerged from data analysis as described below (Table 2).

Table 1 Demographic characteristics of participants
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Table 2 Themes and quotes—participants’ perspectives
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The significance of the OTDC role

The significance of the OTDC role was prominent as participants reflected upon their role as advocates for the deceased donor as well as educators to the SDM. Many participants emphasized their responsibility to advocate for the donor’s wishes when first introducing organ donation to SDMs: “We’re honouring [the patient’s] decision. Yes, it’s hard for the families, and we’re here to support them through that process, and that’s our role. But you’re advocating first and foremost for the patient always.” Another participant described their role as giving a voice to the donor after death: “Our focus is the patient, definitely…we’re the donor’s voice.” This advocacy remained in instances of family veto, and participants revealed feelings of personal responsibility when they were unable to honour the deceased donor’s wishes: “I think…disappointed in myself if I couldn’t say the right thing or get [the SDM] to see why this is so important.”

Also, participants frequently became educators to SDMs. Education is critical to dispel myths and quell distress around organ donation. Many OTDCs spoke about funeral arrangements as an example of misinformation: “Sometimes they ask about open-casket…we address it…[organ donation] doesn’t affect open-casket viewing. I think donation is very accommodating, and that’s why we ask families what their concerns are.” Overall, participants expressed a profound sense of fulfillment in engaging with SDMs, highlighting job satisfaction: “It’s really amazing work that we’re able to do and be with families at a very bad time but turning it into…a good feeling in the end.” One participant commented: “[Families] get inside your head, and they stay with you, and it’s an honour to be with them.”

Emotional distress and the “understandable” family veto

While participants described family veto as “not that common” and “less than it used to be,” experiencing family veto produced lingering feelings of emotional distress. One participant reflected: “[Family veto] brings a sense of distress because you feel like you want to protect the patient.” Another participant said: “I leave kind of feeling gross and sick and devastated that there’s lives lost.” Emotional distress often increased when SDMs were unwavering in their decision to veto: “How do I feel about the veto? It’s complicated…I feel mad, like I do feel mad when [SDMs] won’t…give any room for movement [to consider authorization].”

Participants also acknowledged the trauma experienced by SDMs after a sudden death and this introduced the idea of an “understandable” family veto. One participant described: “Every time I do get a family veto, it’s because of a traumatic experience where it’s—I understand why they are vetoing the decision,” suggesting that there are situational factors influencing family authorization. Another participant recognized the additional suffering that SDMs might experience when asked to consider organ donation: “The family had been through a really traumatic…the patient had really been suffering…So it was a really hard no because they were like, ‘we know he wanted to do this, but we can’t do anymore—we’re spent.’” In these instances, participants understood the veto because they felt they had done everything possible for the patient given the grief experienced by SDMs: “I gave it everything I had…I could say that’s a good no.”

Barriers contributing to family veto

Participants revealed several barriers that challenged the OTDC role, contributing to family veto. Timing was a significant barrier that impacted authorization as participants navigated when to approach SDMs to discuss organ donation: “I’ve had families say, ‘well, if you asked me two days ago, then I would move forward. Why couldn’t you have had this conversation two days ago?’ And I have to explain ‘I can only have that conversation once you’ve made that withdrawal decision.’” Delayed referrals from HCPs of potential donors were especially frustrating as SDMs were often less receptive to the donation conversation: “It was a late referral…[the family] just wanted it over. So, for us to even approach, it’s all the timing. Just asking for 24 more hours or 48 hours, it’s just too much for them.” Participants recognized how the extensive donation process often overwhelmed SDMs, impacting their authorization decision-making: “I think it’s the timing. [SDMs] are in support of it, but as soon as you start exploring how long this is going to take, on top of what they’ve already been through…they just want to get from where they are to the endpoint very, very quickly.” Ultimately, organ donation was described as a missed opportunity due to timing: “It’s a very frustrating situation to be caught in…This golden thing is slipping away from you, and you don’t quite know how to…get it back delicately.”

Healthcare providers’ perceived ambivalence towards organ donation was another barrier for OTDCs. Participants acknowledged that HCPs sometimes seemed reluctant to support organ donation because of rare but influential past experiences caring for transplant recipients, and this impacted their interactions with SDMs. Participants noted: “Being around that population…only seeing the bad…[HCPs are] not seeing the ones who are home back at work and there can be such wonderful things”; “These nurses have gone through the process with families and then for whatever reason [the transplant] didn’t work out…I can imagine that also impacts how positive you’re going to be in your next interaction with a case.” Another participant reflected: “It’s really tough…a lot of the nurses who care for the transplant patients that don’t do well—they’re really jaded.”

Experienced OTDCs described confronting these perceived sentiments from HCPs: “I say like, ‘listen, this patient registered to help other people, I’m here to help them too. I’m not here to cause this family any pain.’” Less experienced OTDCs expressed frustration around the conflicting priorities and lack of shared professional goals within the patient-care team: “Even if [HCPs] feel like they’re doing a good thing by being this protector and dividing you away from [SDMs], it’s actually hurting the family more to see people on two different sides.” Participants suggested that some degree of this perceived ambivalence stemmed from the increased work required when SDMs authorize donation: “When that consent gets signed, [HCPs] work…They get busy.” Many participants agreed that the OTDC role represented increased work for HCPs preparing the deceased donor and potential recipient for transplantation: “Yeah, we are work. We are the face of work [for HCPs].”

Strategies towards a culture of organ donation

Participants frequently discussed strategies to mitigate family veto in organ donation. Value-positive language that emphasizes the deceased donor’s desire to donate30 was cited as helpful in communicating with SDMs: “A lot of times, we’ll use the wording, ‘we can honour their wish, we know this is their wish…and it’s something they really wanted.’” Within patient-care teams, many participants described reframing their role to establish stronger relationships with HCPs: “Sometimes [HCPs will] say, ‘well it’s just so exhausting, and they’re just so upset’. And I’m like ‘what about if we think about this, how we’ve seen families transition. It’s so helpful for them and just the hope that they have of helping others.” This reframing allowed OTDCs and HCPs to approach SDMs as a united patient-care team: “Speaking with the team ahead of time. Having those people on board with you…[is] really important.”

Many participants also called for increased public education and open conversations about end-of-life wishes with families and friends. Participants revealed how SDMs were often surprised about the organ donation process and this lack of knowledge made authorization more difficult: “It’s trying to explain to [SDMs]…they’re not suffering…Because I think it’s the perceived suffering…nobody wants their family to suffer, right?” Several participants discussed how popular medical shows can impact expectations around organ donation: “Like in Grey’s Anatomy…the episode’s done in an hour…It makes it hard to kind of argue because…that’s probably the public’s perception of it.” Many participants agreed that open conversations about end-of-life wishes is critical to creating a culture of organ donation: “Too many people are scared to talk…Family doctors need to talk to their patients about death, about DNRs (do not resuscitate).” Open conversations could help SDMs anticipate the donation conversation and alleviate the pressure they feel when asked about authorization: “I see it in my families, it’s not dinner time conversations…So, lots of them are shocked. Some of them are like…‘okay yeah, that’s what they would’ve wanted, that’s the person they are.’”

Discussion

To our knowledge, this is the first qualitative study to explore family veto from the perspective of OTDCs. Our findings highlight the importance of patient advocacy in the OTDC role, while revealing the emotional distress of experiencing family veto. Participants identified timing and HCP’s perceived ambivalence towards organ donation as two key barriers to fulfilling their role. Participants offered value-positive language, role reframing and increased education as strategies to reduce family veto and increase organ donation.

Legal and ethical conflict

Emerging evidence questions the legal and ethical legitimacy of family veto by presenting the conflict between respect for the previously expressed wishes of the deceased donor and the current wishes of the SDM. Under Canadian law, SDMs have no legal authority to withhold organ donation authorization if the deceased donor had previously consented.9,10 Nevertheless, many provincial/territorial donation organizations still indicate, implicitly or explicitly, that family wishes should be followed.10 Family veto, counter to the legal requirements for organ donation, places OTDCs in a difficult position.

In this study, OTDCs emphasized their role as advocates for the deceased donor. Experiencing a family veto evoked emotional distress and many OTDCs reflected upon feelings of personal responsibility for failing to support the deceased donor. This distress can be likened to the concept of moral distress in healthcare, defined as the “painful feeling and/or psychological disequilibrium that occurs when [HCPs] are conscious of the morally appropriate action…but cannot carry out that action because of institutional obstacles” (p382).31 With family veto, OTDCs identified several barriers preventing them from fulfilling their “morally appropriate action” of upholding the donor’s legal wish.31 Nevertheless, OTDCs also recognized “understandable” family vetoes, highlighting the nuanced nature of situational versus dispositional factors in organ donation.32,33 More research is needed to explore this novel finding.

Timing and support for organ donation

Consistent with previous findings, timing in organ donation was a significant barrier that increased the potential of family veto. Organ donation is a time-sensitive process demanding that patient-care teams work collectively towards a common goal.34 This includes timely identification and referral of potential donors and timely initiation of the donation conversation.34,35,36 In this study, OTDCs discussed how limited time and the prolonged donation process impacted SDMs’ decision around authorization. Siminoff et al.37 reported similar findings, identifying both timing and duration of the donation conversation as significant factors influencing the number of donation-related topics discussed with OTDCs and family authorization. Further, Sque et al.38 identified the concept of “waiting” during the donation process to be especially distressful for bereaving families.

Another barrier to family authorization was a perceived ambivalence from some HCPs towards organ donation, suggesting conflicting personal and professional priorities.12,15,39 In a study by Oczkowski et al.,39 intensive care unit (ICU) staff acknowledged differing viewpoints and personal willingness to participate in donor-related activities. Weiss et al.12 found the most common reasons for physician non-referrals in organ donation were due to assuming the donation process would be dysfunctional, not wanting to impact the family’s trust in the donation system, believing the family was under too much distress, and a misunderstanding of the law regarding authorization. In our study, OTDCs reported concerted efforts to motivate and engage HCPs by reframing their role and organ donation to ways that could support SDMs through their grieving. Research indicates collaborative efforts between hospitals and donation organizations and positive relationships between HCPs and OTDCs to be critical drivers for creating a culture of donation in healthcare settings.15,39,40,41,42 These findings suggest a real need for inter-organizational and inter-professional goal sharing and priority setting.

Education and a culture of donating

While Kentish-Barnes et al.43 found that SDMs expressed a need for additional information about organ donation to aid their decision-making, OTDCs in this study recommended that this education should occur at the societal level. Many SDMs have incomplete knowledge of the organ donation process.44 In a study with SDMs, Sarti et al.45 revealed that informational gaps and “lingering unanswered questions” remained long after the donation experience. Recommendations to encourage discussions around organ donation have been forwarded by other authors. Shaw et al.14 argued that explaining one’s registered wish to family and friends would indicate the strength of the wish. Traino et al.46 and Kentish-Barnes et al.43 found the strongest and most consistent predictor of family authorization was knowledge of the deceased donor’s wish to donate. In our study, OTDCs highlighted the importance of integrating open conversations about end-of-life wishes into everyday conversations to create a culture of donating. This knowledge would aid SDMs to anticipate the donation conversation and could support their grieving and healing process, enabling a more meaningful parting from the deceased.15,47

Limitations

Limitations of this study include the small sample size and a focus on Ontario OTDCs only, impacting the transferability of findings to ICUs elsewhere in Canada. While efforts to recruit all eligible TGLN OTDCs were made, about 20% joined this study. Non-participating OTDCs may have different experiences than those who participated. Nonetheless, the sample was heterogeneous across multiple demographic characteristics (e.g., age, number of years as an OTDC, etc.). Our qualitative methodology allowed participants to provide nuanced reflections on their experiences with family veto, addressing calls in the literature for more qualitative research in this area.43,48,49

Conclusion

This study explored the experiences of OTDCs who work with SDMs who vetoed a deceased donor’s legal consent for organ donation. Our findings highlight important considerations about organ donation authorization processes in Ontario, specifically around waiting times for families of potential donors and the need for enhanced public education on organ donation. The identified barriers and facilitators could support practice changes towards reducing family veto and inform future research to understand and address this phenomenon nationally. Further research is needed to investigate alternative stakeholder perspectives surrounding family veto and the organ donation process, including SDMs, critical care staff, and OTDCs across provincial and territorial legislation. Collaborations with these stakeholders are warranted to align healthcare practices, donation policies, and educational initiatives to increase organ donation.