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Exp May 2, 2024

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Organ donation: A cross-Canada perspective of critical care nursing practice

Rosalie Starzomski PhD, RN, Anita E. Molzahn CM, PhD, FCAHS, Rosella McCarthy, MSN, RN, (Retired), Bernice Budz MSN, RN, CNCC(C), and Sandra Matheson MN, Med, RN (Retired)

Abstract

Aim: Our aim in this study was to describe the experiences of critical care nurses in the organ donation process in selected units across Canada. Interviews and focus groups were conducted to elicit perceptions of critical care nurses regarding their experiences with potential organ donors and their families.

Methods: Two adult critical care units (one with an active transplant program and one with no transplant program) in each of eight Canadian cities were studied. Purposive sampling was used to select three critical care nurses from each unit for individual interviews and six to eight nurses from the 16 critical care units for focus groups.

Findings: There were 112 participants who participated in an individual interview and/or a focus group. Following data analysis, the themes identified were related to support, the process of organ donation (including preparing family and ourselves, lived experience of nurses, saying good-bye, death rituals, spiritual beliefs, and meaning of death), systemic considerations (culture and environment), and outcomes of the organ donation process.

Conclusion: While the benefits of organ donation and transplantation are clear, it appears that greater consideration can be given to policies, structures and processes, including education about systemic racism and unconscious bias that support nurses involved in the process.

Implications for Critical Care Nursing

  • There are limited studies in Canada where researchers explored the perceptions and experiences of critical care nurses regarding organ donation.
  • Lived experiences played a significant role in the interpretations of each individual critical care nurse about organ donation. The organ donation process often caused significant moral distress for the nurses and left moral residue.
  • Collaborative practice models ought to be encouraged among health care leaders, health authorities and organ procurement organizations to improve communication and promote optimal teamwork that leads to effective change and enables critical care nurses to best care for organ donors and organ donor families.
  • Support and education of nurses, as well as use of clinical protocols/guidelines are suggestions that could help improve the organ donation process for nurses. 
  • Because critical care nurses are often key personnel who are caring for organ donors and interacting with donor families, their views, knowledge and abilities about this process are extremely important. It is essential to support critical care nurses to improve their skills in relation to identifying, referring and maintaining organ donors, as well as improving interactions with donor families.

Starzomski, R., Molzahn, A. E., McCarthy, R., Budz, B., & Matheson, S. (2021). Organ donation: A cross-Canada perspective of critical care nursing practice. The Canadian Journal of Critical Care Nursing, 32(4), 21–30. DOI: 10.5737/23688653-3242130

It is well known that organ transplantation dramatically improves the quality of life for individuals with end stage organ failure (Black et al., 2018). In addition, transplantation is the most cost-effective therapy for kidney failure (Yang et al., 2020). In Canada, the majority of organ transplants occur through a process known as deceased donation, where organs are removed after death has been determined (Canadian Institute for Health Information (CIHI), 2020). Deceased organ donation occurs when a person has been declared dead because their heart, or brain, has permanently stopped working (Shemie et al., 2017). However, the shortage of organs for transplantation limits the availability of this treatment. A clearer understanding of the process and culture of deceased organ donation, as experienced by nurses working in critical care units who are involved in caring for organ donors, might facilitate best practices in organ donation.

The lack of organs available for transplantation is a complex problem with numerous related factors (Bea, 2020). It has been suggested that donation could be increased by focusing attention on the events that take place in the hospital around the time a family is offered the option to donate (Bea, 2020; Shemie et al., 2017), but there is limited Canadian research in this area. Alleviating the shortage of donor organs will depend in large part on the skills that critical care nurses bring to the organ donation process through identifying, referring, and maintaining organ donors and providing care to organ donor families (Canadian Association of Critical Care Nurses , 2019). Hence, our objective in this study was to describe the experiences of critical care nurses in the organ donation process while caring for potential organ donors and their families in selected intensive care units across Canada.

Background and Literature Review

While the wait lists for organ transplantation grow, there remains a critical shortage of available organs.  As of December 31, 2019, there were 4352 Canadians actively waiting for organ transplants and, of those, approximately 75% were waiting for a kidney transplant (CIHI, 2020).

Numerous hypotheses regarding the shortage of donor organs exist. While there is a need for public education regarding organ donation, there is also widespread public commitment to organ donation. In an Ipsos Reid poll (2010), it was found that 95% of Canadians either strongly, or somewhat, approved of organ and tissue donation. Half the respondents reported a decision to donate their organs, 7% had decided not to, and 42% had not yet decided (Ipsos Reid, 2010). In a systematic review of research, it was found that individuals who were younger, female, had higher education levels and socioeconomic status, held fewer religious beliefs, had high knowledge levels, knew others with positive attitudes, were more altruistic, and had fewer concerns about manipulation of the body of the deceased donor were more likely to have positive attitudes toward donation and were more willing to donate their organs (Wakefield et al., 2010).

Researchers for over 20 years have suggested that, for the most part, health professionals also have positive attitudes regarding organ donation (Butler, 2017; Molzahn, 1996, 1997a; Radunz et al., 2010; Starzomski, 1997; Zambudio et al., 2009). In a scoping review, Butler (2017) found that nurses mostly had positive attitudes towards organ donation, but they had a perceived lack of knowledge regarding brain death and the donor process. Nurses also lacked confidence and skills in initiating conversations with family members regarding organ donation and they recognized a need for further continuing education regarding organ donation (Butler, 2017). Cantwell and Clifford (2000) studied medical and nursing students and found that although both groups held positive attitudes toward organ donation, nursing students were significantly more likely to have already signed their donor cards than were medical students (74% versus 43%). They also reported that nurses in practice were far less likely to have signed a donor card than were student nurses (57% versus 74%). These authors suggest further study to explore the nature of these differences in perceptions. It may be that there are concerns that brain death is not truly death as Floden and Forsberg (2009) found.

In some cases, negative attitudes and a lack of knowledge about organ donation and transplantation have a negative impact on the process. For example, in the only Canadian study found including both health professionals and lay people, Starzomski (1997) found that support for organ donation among consumer groups (93%) was higher than in groups of health care providers (76%). The main reason given by health care providers for not supporting organ donation was ‘negative personal experiences.’ This was particularly true of critical care nurses in a hospital where multi-organ transplantation was occurring. Nurses in critical care units in non-transplanting hospitals had a much more positive attitude about organ donation and indicated they all had signed their organ donor cards.

In studies of nurses’ and physicians’ knowledge and attitudes regarding organ donation, Molzahn (1996, 1997b) found that critical care nurses scored significantly higher on the knowledge sub-scale than nurses practicing in other areas. Knowledge, attitude, age, and number of hospital beds were significant predictors of nurses’ involvement in organ donation (Molzahn, 1996, 1997b). Further, Molzahn (1997b) found that 85% of critical care and emergency nurses participating in her study were reluctant to approach families about organ donation. While 35.6% of the critical care nurses reported that nurses were the first to recognize a potential donor, only 13.6% reported that nurses were the first to approach the family. 

Weiland et al. (2013) found that cultural and religious influences might be barriers to facilitating organ donation and transplantation. In emergency departments in Australia, they found that physicians and nurses of Arabic, Jewish, North African and Middle Eastern background reported low competence in referring and caring for potential donors and comforting distressed families. Professionals of Islamic faith reported lower competence in identifying potential organs and low support for organ donation; those of Buddhist and Hindu faiths reported low competence in identifying potential donors.

Obtaining consent for deceased organ donation can be an issue; Siminoff et al. (2013) noted that at least 25% of families decline organ donation. Factors associated with consent for organ donation include characteristics of the patients, the donor families’ beliefs and attitudes about organ donation, the families’ satisfaction with the hospital care their relatives received, specific aspects of the donation-request process, and the families’ understanding of brain death. They argued that detailed explanations of brain death were not necessary and indeed might be confusing to families; they suggested that a simple message that a loved one died was more appropriate.

Effective communication during organ donation requests has been found to be key to obtaining family consent (Shemie et al., 2017; Siminoff et al., 2009). This includes initiating the request with empathy, acknowledging the loss, soliciting family’s perspectives and beliefs about organ donation and the patient’s donation wishes, developing and maintaining a supportive relationship with the donor family, providing closure by summarizing the family’s position, and outlining next steps and expressing gratitude (Shemie et al., 2017; Siminoff et al., 2009). In Europe, an evaluation of effectiveness of international recommendations of the European Donor Hospital Education Program (EDHEP) were measured using a Donor Family Questionnaire (Poppe et al., 2019). Of the 64 families that participated, 89% considered the communication to be tactful. Only 24.1% had a separate conversation about death and donation (which is the recommendation). The physician was seen to be the most active care provider offering emotional support during the entire procedure. It seems that nurses and other health professionals could be more involved in the process. 

Rodrigue et al. (2008) examined the instability of organ donation decisions made by next-of-kin and factors that predict whether non-donors wish they had consented to donation. Using semi-structured telephone interviews, they found that 94% of families and 64% of non-family non-donors would make the same decision again. Regret among non-donors was more likely when the next-of-kin had more favourable transplant attitudes, had the first donation discussion with a non-organ procurement organization (OPO) professional, was not told their loved one was dead before this discussion, did not believe they were given enough time to make the decision, had not discussed donation with family members, and had not heard a public service announcement about organ donation. 

Simpkin et al. (2009) conducted a systematic review of 20 observational studies of modifiable factors in the process of requesting organ donation. Reduced rates of refusal were associated with: provision of adequate information on the process of organ donation and its benefits; high quality of care of potential organ donors; ensuring relatives had a clear understanding of brain stem death; separating the request for organ donation from notification that the patient had died; making the request in a private setting; and using trained and experienced individuals to make the request. These investigators suggested that critical care nurses have an important role to play in enhancing organ donation.

A variety of strategies have been employed in attempts to increase organ donation rates. Required request legislation and policies for routine notification of OPO programs of donor-eligible patients failed to have a significant impact on consent rates (Siminoff et al., 2013).

In Spain, high organ donation rates have been achieved through the development of a national organ donation program that includes the employment of specially trained health care professionals (mostly physicians) responsible for identifying potential organ donors and requesting donation inside and outside the intensive care setting, using expanded criteria for donors and developing a framework for donation after circulatory death (Matesanz et al., 2017). In the United States, from the evaluation of the Organ Donation Collaborative (Howard et al., 2007) where best practices in donor requests were emphasized, it was noted that there were higher conversion rates in participating hospitals than control hospitals (from 51% to over 60%) (Siminoff et al., 2013). Upon examination of data from Ohio, researchers showed that first person authorization of organ donation though electronic registries accounted for an increasing proportion of recovered donors (Donate Life America, 2011), but further evaluation of registries is needed.

Presumed consent (i.e., donation unless people opt out) legislation has been used in a number of countries with mixed results (Rithalia et al., 2009). It has recently been implemented in the United Kingdom (Walton et al., 2020). In a recent Canadian survey, 7 in 10 respondents reported support for a new system of organ donation that enables presumed consent and some provinces, such as Nova Scotia, have moved in this direction (Canseco, 2020).

It has been recognized that the Canadian organ and tissue donation and transplantation system is complex (Zavalkoff et al., 2019) and the optimal solution involves collaboration, consensus and coordination. Some of the most limiting factors in relation to organ donation include failure to determine which patients are potential organ donors, failure to refer potential donors to the organ procurement organization, and refusal of patients’ families to consent to donation. Shemie et al. (2017) highlight research-based guidelines relating to effective end-of-life communications with family members.

Regardless of the enabling legislation, critical care nurses play an important role in organ donation (CACCN, 2019). In Sweden, where presumed consent legislation is in place, critical care nurses have varying views of the process, and, in a phenomenological study, critical care nurse participants emphasized that nothing should go wrong with the organ donation process (Floden & Forsberg, 2009), They perceived a heavy burden and did not want to further traumatize the donor family.  We suggest that a better understanding of critical care nurses’ experiences in caring for potential organ donors and their families, and a better understanding of the attitudes, values, and practices in relation to those experiences, might facilitate improvements in practice relating to organ donation.

Methods

The approach used for this study was naturalistic inquiry informed by a social constructivist perspective, that is, human perceptions are shaped by individuals’ interactions with society and culture (Denzin & Lincoln, 2018).  Hence, a situation cannot be considered in isolation from the context (Patton, 2015). The research process consisted of successive iterations of purposive sampling, inductive analysis of the data, the development of themes and categories, and planning for subsequent steps based on the analysis (Denzin & Lincoln, 2018).  

Participants and Settings           

Two adult critical care units (one in a hospital with an active transplant program and one in a hospital with no transplant program) in each of eight cities across Canada (Vancouver, Edmonton, Winnipeg, Toronto, Ottawa, London, Montreal (English speaking) and Halifax) were studied. Purposive sampling, where participants who met the selection criteria of being English speaking and willing to be involved in the study, were invited to participate. Three critical care nurses from each of the study units were invited to participate in individual interviews. In addition, six to eight nurses from each of the 16 critical care units were recruited to participate in focus groups.

Data Collection

Data were collected through individual interviews and focus groups over a two and a half year period. Onsite coordinators at each location assisted in recruitment of participants. Guiding individual interview and focus group questions were developed by the study research team. Questions included asking participants to tell us about their involvement and experiences caring for organ donor patients and families and asking them probing questions following their responses.

Individual interviews were conducted to elicit perceptions of the critical care nurses regarding their experiences with potential organ donors and their families. The interviews were conducted by one person, the study research coordinator, and held in a room close to where the nurses worked. All interviews lasted from one to two hours, were audio-recorded and transcribed verbatim by the study research coordinator.

Focus groups were held in order to uncover understandings and insights about critical care nurses’ experiences with the organ donation process that were not accessible through individual interviews. Each focus group was conducted by the study research coordinator with assistance from the onsite local coordinator and was held in the hospital to facilitate easy access for participants. Some participants were given time off work to attend and others participated on their own time.

Data Analysis

Our aim in the analysis was to identify, interpret, and reconstruct understandings of individuals’ reality. Data collection and data analysis occurred simultaneously throughout the study period. Analysis was inductive and thematic as described by Denzin and Lincoln (2018). Analysis began by having members of the team read transcripts. During team analysis meetings, investigators shared initial perceptions and understandings of the data and emerging categories. Through a process of refinement and review, and constant comparison, patterns and relationships were developed into themes.

Denzin and Lincoln (2018) propose that researchers in the naturalistic paradigm pursue rigour by establishing the “trustworthiness of the interpretations.” In our study, given that the narratives were co-constructed through dialogue, the requirements for rigour rested on the establishment of good rapport with participants, clear articulation of all sources of data, the establishment of a detailed audit trail whereby another researcher could critically examine the process and decision-making of the researcher(s), as well as the construction of the interpretative account/findings. These factors were attended to in this project by writing field notes following each interview and transcribing data verbatim. In addition, members of the research team ensured that interpretations were founded within the data by analyzing and critically evaluating findings and interpretations.

Ethical Considerations

Approval for the study was obtained from the Human Research Ethics Board of the university where the investigators were employed as well as from each participating hospital. Informed consent was obtained from all participants in verbal and written form, and confidentiality was assured by storing the consent forms, separate from the data, in two locked filing cabinets in the project coordinator’s private office.

Findings

There were 112 people (95 women and 17 men) who participated in either an individual interview and/or a focus group. They ranged from novice practitioners to highly experienced nurses. Thirty-one participants had up to five years’ experience working as critical care nurses, seventeen between six to 10 years, 29 between 11 to 15 years, 20 between 16 to 20 years, 8 between 21 to 25 years, four between 26 to 30 years and three participants had over 30 years’ experience. All of the nurses had considered organ donation, with 50 indicating they would be organ donors. Of the remainder, 14 would not be organ donors and the others were undecided or did not respond to this question.  

The themes that emerged from the data related to support, the process of organ donation, the systemic considerations (culture and environment), and the outcomes. The sub-themes that related to process included preparing family and ourselves, lived experience of nurses, saying good-bye: death rituals, spiritual beliefs, and meaning of death. (See Table 1)

Support

Participants identified support surrounding their experiences of organ donation from a variety of perspectives. Support for organ donation was discussed in relation to the family, nurse, and transplant program.

Support for family members was focused on the initial conversation concerning organ donation, the need for education about the diagnosis of brain death, and the need to work with family members to discuss and support them throughout the entire organ donation process.  One participant shared the following:

…If it’s in the middle of the day, it’s great, you have your educators there, you have your organ team, you have your transplant team, you have everybody there. But if it’s in the middle of the night, there’s the nurse and the resident to approach the family on, you know, would you like to donate and there is no support for them.

Support for the individual nurse at the bedside included a need for protocols for evidence- based donor management, and the need for teaching and support on brain death criteria. Nurses also identified a need for personal emotional support. Many participants described organ donation as a very traumatic, emotionally draining experience. They also identified examples of effective support, particularly from their co-workers. For example:

I know recently we had a young fellow that was an organ donor, and the family had all said goodbye…I knew the nurse in there had never experienced anything like that before and she was alone, you know with the patient and she was just sobbing like just from her toes sobbing, and she had said she’d never had that before. And we’ve all been there and we knew what she was feeling.

Transplant programs with 24-hour support resources available to the family and staff were highlighted as making a positive difference in the experience of organ donation for nurses. One participant shared the following:

Well, she is one person who is focused on organ donation and donors whereas we’re a big staff of like 150 people…the last time I did organ donation, you know, we did it this way and now it’s been a couple of months, now we’re doing it this way.  

Process, Time and Timing

Preparing the Family and Ourselves for Organ Donation

Nurses wanted to know how to ask families about organ donation and how to support family during the request period. There was also a high need for education about determining brain death, knowing how to explain that concept to families and a need for an updated check list for preparing donors for donation. There was support for a core group of people to be trained in requesting organ donation and preparing donors due to the infrequency of the process. Many nurses said they learned on the job and believed that more formal training was needed for the entire interdisciplinary team. In one unit, the nurses said: “nurses were hungry for education on organ donation.” If the first donor experience was positive, or negative, for the critical care nurse, this set the tone for how supportive the nurse would be to participate and support future donors and the process. Suggestions that nurses cited to help support them in the organ donation process included a training program on how to ask for organs, an introduction to organ donation in the unit orientation, reading packages and videos for staff, resource binders, and a biannual panel presentation of donor families and transplant recipients about their experiences.

Nurses wanted to be sure the families were well supported and suggested inclusion of pastoral care workers and social workers to augment nursing support. Some nurses said that the donor process at the bedside was so labour intensive that they often did not have as much time to spend with the family as they wished because of the challenge of providing care to the donor. Nurses believed strongly that more public education on organ donation was needed in schools, media and in the home, for example, over the dinner table, and that this would facilitate the process.

Lived Experience of Nurses

Many participants shared stories about memorable situations, particularly while caring for their first organ donor. These stories were often vivid and emotional, and influenced the critical care nurse’s future practice either positively or negatively. For instance, one nurse said,

The first time I saw brain death criteria…this patient eventually did become a donor on a different shift…just seeing all of the criteria and the care and, all the procedures, as we go through it, makes me feel much more confident that, yes, they, you know, they are brain dead. They’re not really, they’re not alive…

Some indicated frustration with the organ donation process and the work and energy expended.

I think that sometimes we, as nurses, are all ready to either assume the responsibility or are asked to assume the responsibility… and, all of a sudden, we are faced with managing an unstable donor patient with an R1 who is reading his Marino ICU book…I become frustrated and I’ve got a family that’s at the end of the bed crying at the same time, but watching me try to lead the doctor through managing their loved one.

Several stories were shared by participants describing the frustration and anger caused by receiving patients identified inaccurately as potential donors from outlying centers. These emotions related both to the associated heavy workload, as well as the stress and loss to families unnecessarily separated from their injured loved ones.

Examination of the lived experiences of the participants indicated that their beliefs regarding the outcomes for patients and families had a significant influence on them. One nurse stated: “I’ve seen the families who have seen the joy of hearing that they’re getting a transplant and I’ve seen the other side of the family who has made the decision to donate.” Many participants revealed that in their experiences with the donation side of the process, almost all of the families who went on to donate were comforted by the decision to donate their loved ones’ organs. Some reported angst about times when the family was not able to be with their loved one in a meaningful way at the end of life. Sometimes, the process just did not proceed as well as it did other times. Past experiences with unsuccessful transplants resulted in negative attitudes.

We aren’t doing a service to a lot of people…they’re already “sipping tea with Jesus” and you’re going to put an organ in there that was previously healthy, you’re going to pummel the living [heck] out of it trying to make it work, and then if they die two months down the road, oh yeah, you did them a lot of favour. They laid in the bed and they were tortured, and an organ ended up that could have gone to somebody else who was maybe sitting at home.

Some participants related conversations with transplant patients who stated they would never repeat the process. These patients described the trauma and the side-effects to be unworthy of the risks. Interestingly, a few of these patients indicated that their families would “do it all again”.

Many participants identified that because each experience affected their subsequent experiences, more opportunities to share and discuss these experiences with team members would be of benefit. One nurse described a poignant experience where her emotional response was noticed by a colleague, who then arranged for a break and critical incident debriefing. This participant believed that this support enabled her, at the time and in the future, to be “relatively intact mentally” and influenced her belief that the climate of working with staff shortages would greatly affect the lived experiences of future critical care nurses who would not “have time to heal”.

Saying Goodbye: Death Rituals

Many of the nurses talked about facilitating the process of saying goodbye by enabling family members to have time with their loved ones.  They were very open and flexible about visiting hours, recognizing that families needed the time. The rituals took a number of forms, from talking with the family members to providing privacy and final meaningful opportunities to spend time. This was often a very difficult process for the nurses as well as the family members, as evidenced by the emotion in their voices and the words they used.

Be alone, you know, and so you try, or sometimes you say, ‘Look, I’m just here. You take them to the other side’, and you touch his hand…be alone with him or we just close the door so they can just, you know. But, these are things too for the family you know. Because for me, too, the families are very important because they’re going through this big loss.

Another nurse said:

I recently had a case where the girlfriend said, ‘I just want to sleep with him one more night’. He wasn’t quite pronounced, but that was going to happen the next day… I managed to get her into bed with him and she said, ‘this is where I put my head right here’ and she put her head on his chest and then she said, ‘Could you just bring his arm, just bring it right around me’.

One nurse talked about listening to the families’ stories about their loved ones: “They always really start to open up about the patient. It’s very, very rewarding. And when that patient rolls out, it’s a person you’re looking after, you’ve never known before, so stories, it’s like stories…” A few of the nurses talked about cutting locks of hair for relatives and offered other supports.

We asked the two daughters if they wanted a piece of their mother’s hair. And we cut a lock of her hair. We tied it with a little ribbon and gave them each and…and I remember I came into this room where they were, you know, having this little quiet time and we gave them each a teddy bear. And, I remember when I said good bye to them, hugging the two daughters, the two teenagers and I remember the teddy bears were soaked with tears, I think it made a difference.

 

Spiritual Beliefs

The nurses discussed spiritual beliefs in relation to organ donation. One nurse said: “We have actually had some people in the past who have absolutely refused to care for transplant patients because it was against their religion, that this sort of thing was playing God and interfering with the natural process in a person’s life.” A few nurses talked about how their religious beliefs were not consistent with organ donation. For example, one nurse said: “… I have to get there complete. … You go to heaven when you pass away and they have to get complete. My heart, it will be hard to get there without my heart. So it’s just beliefs, too.”

Even when they did not speak explicitly about religion, spiritual beliefs came through. One nurse said:

We don’t have a problem with death and dying in our family; we feel very comfortable with it. You know like you’re going on to a better place and to donate our organs we’ve all agreed, except my brother. He believes in miracles (laughs).

Another nurse commented that her beliefs changed through education.

There was a time when I said, don’t you dare donate my eyes. Eyes are the windows to the soul. I now know better, now that I’ve had that education…the eyes are the windows to the spirit, not the window to the soul. You know what, your spirit, it’s more of my own philosophy about where are you going, what you do. This is merely a shell and if I can make a difference.

Meaning of Death

Most of the participants in the study talked about their observation that organ donation gave families meaning to the death of their loved ones. Also, organ and tissue donation helped some nurses make sense of the situation of young people who experienced untimely deaths.

I had a mother begging me on the phone to make something good come out of this…I mean, there with her son. We’re asking for organ donation over the phone…but I mean she’s in tears and she’s begging me on the phone to make sure that I keep him alive. Alive in, quotes, “until something good came of this.”

Another nurse said:

[They] are at the breaking point of something that’s happened to their loved one but get peace and comfort from knowing that they’ve helped someone else…but it’s been a good experience for 99% when you know they embrace it wholeheartedly…it brings peace to the whole, whole thing.

The majority of families who consented to organ donation felt comforted by the fact that they decided to allow the loved ones to donate. Similarly, for some of the nurses, the donation gave meaning to the tragedy of death.

And then, I think if you’ve looked after somebody who’s received a heart, these people like they’ve just seen another view of life. And a transplant patient in the CCU and his kids were like literally swinging from the rafters and he’s just sitting there watching them. He says, ‘I’m just happy to see ‘em do it’ cause I didn’t think I was going to have this opportunity. 

Another nurse talked about organ donation as the “ultimate sacrifice.”  They said that “if you focus on that, that’s kind of a helpful feeling.”

Systemic Factors and Structure

There was awareness on the part of many of the nurses that ethnocultural factors played a role in family decisions regarding organ donation. The nurses identified specific ethnocultural communities (for example, Indo-Canadians, Muslims) and Indigenous communities where they had experienced reluctance to donate on the part of some individuals. One nurse said: “It is a very difficult one with Aboriginal people because [some] will receive organs but they won’t donate them. So that’s a bit of an oxymoron to me.” Another noted,

Aboriginal people, in my experience anyway, don’t tend to donate organs. They receive donations and once they die, they actually have all of the organs and artificial things removed so their body is maintained back whole and returned to the earth.

Some nurses talked about hypothetical cases, and others gave examples from their experience. One nurse, talking hypothetically, discussed a Muslim man refusing to accept an organ for his daughter if the donor had eaten pork. It seemed from each of these situations that the nurses may not have understood, or respected the cultural values of either the Indigenous or Muslim people they discussed.

At least one of the nurses acknowledged that they needed to be careful about making assumptions based on ethnocultural beliefs.

We ask despite, even the most religious Orthodox Jewish person you could meet, we’re still going to ask…we’ve had surprises and there’s even some Rabbis who will tell you, you know, there’s nothing written in the Torah that says you can’t donate organs…so we ask everyone.

The nurse participants in this study discussed the significance of the environmentfor organ donation in a number of ways, including geography and the environment/culture of the unit. From a geographic perspective, nurses were able to identify provinces/regions where there was considerable support for organ donation and other regions where there were few donations. For example, one nurse’s perspective was: “Atlantic Canada has a better donor rate than the rest of Canada…and the biggest supply of organs from Atlantic Canada comes from Newfoundland. Newfoundland has a tremendous organ donation program where they have a lot of ‘buy-in’.”

They also attributed many of the values that they (and other Canadians) held about organ donation to “a different perspective in Canada where we really want people to volunteer, give their blood, give this, give something else.”  These Canadian values were used to explain why financial incentives should not be considered for donor families to help families make the decision to donate a loved one’s organs. They were also used to explain why there was a reluctance to request organ donation.

Our numbers are so down in Canada. Is it because we are too nice a people to be asking? But is it because we’re so complacent that we don’t want to put anybody out by asking? There’s lots of donors out there who should be donors that aren’t being asked and why is that?

They also discussed their observations that organ donation was more likely to take place in major urban settings. Some nurses raised the topic of the variety of ethnic backgrounds in their province that made it more challenging to request organ donation.

Nurses in the study described the environment of specific intensive care units as important. They talked about the important role of the physician in creating an environment conducive to organ donation. They knew the opinions of various physicians about organ donation, whether or not those opinions were spoken.

Some of them aren’t comfortable with it. They aren’t comfortable with approaching the families, and so you know lots of times I’m sure that the organs go by. Because they’ll wait and they’ll wait and wait before…I guess it is so uncomfortable they don’t want to approach the family and sometimes it’s lost.

Another nurse noted, “There’s a very bad rapport between the transplant surgeons and the ICU team. So I think that there’s really bad communication there and I think that contributes to a negative attitude in terms of transplantation.”

The nurses also discussed the frustrations of working in environments with inexperienced residents and physicians who were not knowledgeable about neurological determination of death, or unwilling to come in to declare someone neurologically dead. On the other hand, in some centres, the critical care nurses identified specific clinicians who “put organ donation in a more positive light.” Some talked about social workers, or pastoral care professionals, who facilitated their work in relation to organ donation. The support of nurse managers in the organ donation process helped to create an environment where organ donation was considered to be a positive action. One group of nurses discussed the systems in their unit where the entire team worked towards improving organ donation.

Outcome

While successful transplantation was the desired and usual outcome, a number of participants conveyed unresolved feelings of moral distress when recounting their experiences about caring for organ donors. Even though some experiences described by participants took place years ago, for some, unresolved moral distress and moral residue remained. For example, one participant related the following experience:

I almost cried with them, it was very, very emotional for me; it was very difficult for me. And then he went to the OR for harvesting, and in the same 12 hour (shift), I got the recipient. It was the hardest thing for me. I had to physically put on armor. It was too much for me. Now it was turning into the most beautiful thing, the same event had such different meaning for me. It was so sad in the morning, and in the afternoon it was the best thing that ever happened to that family, because he got his heart. Both occasion(s) the family was there, that was so really hard for me. You know, the family was saying, “Isn’t this wonderful!” And in the morning, it was a young donor, and it was so hard. And I’m sure if the family were not there in the morning when I got that person as a donor, I probably would not have felt it that bad. I would have detached myself. Like I was just taking care of a patient, a sleeping patient. I have to, ah; it’s never been easy for me. And it’s not getting easier for me with experience.

 Another participant conveyed a sense of unresolved moral distress by saying:

Well, I mean I always find it hard, you know, working with somebody who’s dying especially if they’re young or, there’s a really tragic circumstance…but, you get a sense of satisfaction after it’s all over. Often the families will come up and give us a hug and thank us for all that we’ve done for them and, so you feel really good afterwards. But I know sometimes, I’m over at the desk in tears while they’re behind the curtain in tears. So it’s, it’s hard. And I’d just as soon not have to do it. I know it’s part of the job, but, if I never had to that again, that would suit me fine.”    

Discussion

Organ donation is a complex process, which involves caring for, and identifying, potential donors, obtaining consent from families, and procuring the organs around the time of death. There is limited research in Canada exploring the perceptions and experiences of critical care nurses regarding organ donation. The data we obtained in our study elucidated for us that lived experiences played a significant role in the interpretations of each individual critical care nurse about organ donation. The organ donation process often caused significant moral distress for the nurses and left moral residue. Nurses recounted painful experiences, which they had never forgotten. These experiences often happened many years before their interviews for this study. Nurses required considerable support when caring for organ donors and engaging in the organ donation process. The findings of this study are consistent with Elpern et al. (2005) and Floden and Forsberg (2009) who also noted that there were times when nurses experienced moral distress regarding organ donation.

Although participants in the study identified the need and desire for information about organ donation, in Canada, most health care professionals do not receive specific education about identifying, caring for and recruiting organ donors (Norris, 2020).  However, discussion has occurred in Canada in the last number of years about ways to improve critical care environments to help support critical care staff, including nurses, to more effectively be involved in the OD process. Much of this work was initiated and coordinated by national groups, such as organ procurement organizations (for example, Trillium Gift of Life, British Columbia Transplant) and national groups (for example, Health Canada, the Canadian Council for Donation and Transplantation (CCDT) and the Canadian Blood Services (CBS). The CCDT launched an organ donation collaborative bringing together health care professionals from Western and Atlantic Canada who were committed to making changes in their organ donation programs. The focus of the collaborative was for critical care teams to identify and share practices as well as develop best practices for the future. More education for critical care staff about organ donation and adding organ donation coordinators to critical care units in hospitals were two of the interventions emerging from these discussions (Canadian Council for Donation and Transplantation, 2007).

The participants in this study also talked about the system issues that interfered with the organ donation process. There is evidence demonstrating that collaboration with health care leaders produces positive outcomes (Shafer et al., 2008). Collaborative practice models ought to be encouraged among health care leaders, health authorities and organ procurement organizations to improve communication and promote optimal teamwork that leads to effective change and enables critical care nurses to best care for organ donors and organ donor families. Issues relating to support of nurses, education of nurses, and use of clinical protocols/guidelines were suggestions offered that could help improve the organ donation process for nurses. Further education about systemic racism and unconscious bias also seems to be warranted based on a few of the responses of nurses in the individual interviews and focus groups.

There are a number of implications for practice as a result of this study.  Because critical care nurses are often key personnel who are caring for organ donors and interacting with donor families, their views, knowledge and abilities about this process are extremely important. It is essential to support critical care nurses to improve their skills in relation to identifying, referring and maintaining organ donors, as well as improving interactions with donor families. Researchers have concluded that enhancing the quality of hospital care and ensuring that the request for organ donation is handled in a way that meets the families’ needs could increase organ donation rates (Shemie et al, 2017). As critical care nurses are key personnel who interact with donor families, it is vital that they understand both the transplant and organ donation process and their role in these processes (CACCN, 2019). Further, they must be involved in discussions about ways to influence change in the system.

There is an urgent need to work towards the development of national evidence-informed best practices and to disseminate these findings to critical care nurses. There are a number of initiatives in this area that show promise (CBS, 2021; Health Canada, 2021). For example, since 2018, Health Canada has been leading an initiative that involves the collaboration of a number of stakeholders, such as the CBS, critical care practitioners, health care administrators, OPOs, and patients and families across Canada, to continue to improve the organ donation and transplantation system. Further evaluation of these initiatives is required to determine the overall effect of these interventions on the experience of critical care nurses and to establish whether these practices continue to increase organ donation in Canadian critical care units. 

The development and sharing of national standards and best practices can provide critical care nurses with a significant resource, so that they can practice in a more effective, consistent and collaborative manner

Limitations

Participants volunteered for this study from a number of adult critical care centers in Canada. Qualitative research is typically not generalizable and it is difficult to know if participants’ views and perspectives are representative of Canadian critical care nurses experiences with organ donation. The inclusion of nurses from multiple centers, both in individual and focus group interviews, helped mitigate this limitation. Future research should include evaluation of interventions to examine the outcomes of education of nurses, support programs for family members and critical care nurses, and/or new targeted collaborative approaches to enhance organ donation. 

Conclusion

In conclusion, the themes that emerged from this study of critical care nurses involved in organ donation included the need for support, more attention to the process of organ donation (including preparing family and ourselves, lived experience of nurses, saying good-bye: death rituals, spiritual beliefs, and meaning of death) the systemic considerations (culture and environment), and the outcome of the process (including moral distress). The benefits of organ donation and transplantation are well documented in the research literature and it appears that greater consideration should be given to policies, structures and processes that support the health care professionals who are involved. In addition, evaluation of the interventions that are currently in use should be carried out in order to ensure that critical care nurses are supported when caring for organ donors and employ evidence informed best practices as they carry out their work in regard to organ donation. Critical care nurses are key stakeholders in the organ donation process and should be involved in initiatives to influence change in this area.

Author Notes

Rosalie Starzomski, PhD, RN, Professor, School of Nursing, University of Victoria

Anita E. Molzahn CM, PhD, FCAHS, Professor Emerita, Faculty of Nursing, University of Alberta

Rosella McCarthy MSN, RN, Retired, Clinical Nurse Specialist, Cardiology, British Columbia Children’s Hospital

Bernice Budz MSN, RN, CNCC, Consultant, Healthcare Concepts to Solutions, Vancouver, BC

Sandra Matheson MN, MEd, RN, Retired, Clinical Nurse Specialist, Cardiovascular, Nova Scotia Health Authority

Corresponding Author

Rosalie Starzomski, University of Victoria School of Nursing, PO Box 1700, Victoria, BC V8W 2Y2   Phone (250-721-7204)     Email: rosestar@uvic.ca

Acknowledgements

The authors gratefully acknowledge funding from the Kidney Foundation of Canada to support this project.  We also appreciate the many contributions of Claire Miller who served as the research coordinator for the project.

Funding and conflict of interest statement

The authors acknowledge funding from the Kidney Foundation of Canada. The authors have no conflict of interest to disclose.

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Table 1

Themes Emerging Related to Organ Donation Among Nurses Working in Critical Care

    SUPPORT  PROCESS, TIME, AND TIMINGSYSTEMIC FACTORS AND STRUCTURE    OUTCOME
    
FamilyPreparing the family and ourselvesEthnocultural factorsSuccessful transplantation
NurseLived experience of nursesEnvironment for organ donation (e.g., country, unit)Moral distress
ProgramSaying goodbye  
 Spiritual beliefs  

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