Background

The effectiveness of the donation request is generally measured by consent rates [1–11]. Donation rates also seem to be the primary interest in research about attitudes of intensive care unit staff (ICU staff) [12]. However, donation rates are determined by relatives. The decision to donate or not may be extremely difficult. Publications addressing decision stability report substantial dissatisfaction, especially with donation refusal [13–16] and even traumatic memories regarding the donation request [4, 17, 18]. This research outcome does not seem to influence daily practice of ICU staff [19]. However, it does seem important, because preventing regret in cases of refusal can primarily lead to no or less harm for relatives and consecutively the possibility of more organs.

We carried out our research in the context of the Dutch law on organ donation. The aim of our research is to elicit ICU staffs’ views and experiences with the donation request, and to investigate their awareness of (dis)satisfaction with donation decisions by relatives, especially in cases of refusal. Our ultimate goal was to collect advice that could be used to produce a higher rate of satisfaction among the relatives.

Methods

Design and sampling

To elicit Dutch ICU staffs’ views and experiences with the donation request we conducted a qualitative study with a total of 32 ICU professionals, divided into five focus groups [20] from November 2010 until March 2011 (Table 1). Focus groups were chosen for data collection because, compared to questionnaires and one-to-one interviews, the interaction between research participants can encourage open conversation about sensitive subjects and facilitate the expression of ideas and experiences that might be left underdeveloped in an interview [21]. In cooperation with an ICU physician (CH) the primary investigator recruited 24 participants by general (email) invitation to all professional workers in the ICU of the University Medical Centre (UMC) Nijmegen, as well as 8 participants by a directed invitation of professionals from another 4 Dutch transplant centres (also UMCs) in the Netherlands. Participation was voluntary. Focus group meetings lasted between 67 and 94 minutes, with an average of 76 minutes. We organised two mono-disciplinary groups (nurses and medical specialists) and three mixed groups (nurses, physicians and transplant coordinators), expecting differences in openness.

Table 1 Characteristics of participants
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Our study was approved by the UMC Nijmegen research ethics board.

Focus group sessions

An experienced moderator (CF) facilitated the discussion and flow of the focus groups using a structured interview guide (Additional file 1), based on a review of current literature [22]. The interview guide was pilot tested with two physicians and two nurses to ensure that the guide was clear and well-understood.

Firstly, we initiated a discussion about participants’ attitudes to and experiences with the request for organ donation to relatives of a potential donor. In the second part we asked the participants to consider the decision making process and relatives’ possible regret about refusal, thereby focusing on possibilities for discovering and preventing this regret.

Data collection and analysis

All focus group sessions were audio and video taped; one co-moderator (WGS/HL) was present to record field notes of reactions that were undetectable by recorders. All sessions were transcribed verbatim. We used a practical guide for applied research [23, 24] for data collection as well as a mix of conventional and directed content analysis [25]. Data were coded from the transcripts using a process of open, axial and selective coding [24, 26], using Atlas.ti©-software. Three investigators (JdG/WS/AdV) independently developed a coding scheme by identifying, labelling and classifying the primary patterns in the content. These study investigators discussed coding; disagreements that could not be resolved were adjudicated by the principal investigator. All codes have been presented in Table 2.

Table 2 Code book
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All co-authors discussed the analysis and the findings and contributed to the discussion.

Results and discussion

Differences between focus groups

When ICU doctors spoke separately they paid more attention to their own perspective, discussing their requestor tasks and skills and the effects of their relationship with relatives. When nurses discussed organ donation separately, they revealed more of their own personal opinion as well as more criticism of the interventions of ICU doctors. They felt that some doctors requested for donation too early, e.g. before mentioning a possible brain death, and took too little time to stay with relatives once the question was raised and/or the decision was taken. In mixed groups (physicians, nurses, transplant coordinators) organ donation in society and law and the interests of different groups (potential donors, relatives, potential recipients) were more frequent topics. In the focus discussion transplant coordinators also commented on situations in which they had not been involved, such as when relatives initially refused donation and for that reason had no contact with the transplant coordinator.

Interview themes

We identified four themes, divided into 14 categories, resulting in 30 codes (Table 2).

The first theme concerned the ICU staff taking the perspective of the relatives, the second theme concerned the experience of ICU staff from their own perspective, i.e. the perspective of the requestor, including their personal attitude towards organ donation and transplantation. The third theme concerned participants discussing the care after discharge. The fourth theme dealt with how ICU staff considered donation as a societal theme (legislation, media, education). We have presented some illustrative quotes (marked with Qn) for the categories in Table 3.

Table 3 Overarching themes
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Theme 1: Donation request perceived by ICU staff from the perspective of relatives

ICU staff not only tried to imagine the impact of the donation request on the relatives, but also how relatives decide, how they evaluate their decision and what is helpful in making that decision. In general, ICU staff knew more about the result than about the process of decision making. They respected refusal by relatives, but were not usually aware of how (dis)satisfied relatives were with that decision, especially after refusal. In the following paragraphs we will present different categories mentioned by ICU staff taking the perspective of the relatives in more detail.

Decision

Decision making was described as particularly difficult for relatives when the patient’s wish was unknown and/or if relatives disagreed with each other about the decision. Refusal seems to be considered in a less serious way by relatives than consent (Q1). ICU staff said that they seldom encouraged relatives to reconsider their decision. ICU staff also explained that relatives sometimes gave consent before the request was made.

Evaluation

ICU staff observed that patients’ values and religion were scarcely mentioned as an argument in the decision, yet objections and values of relatives played a much more important role. ICU staff rarely asked for arguments justifying refusal (Q2). So ICU staff cannot foresee regret, except from those who consented and were surprised by the length of the procedure (Q3). ICU staff said they could understand these objections of relatives and that this could be a reason for refusal.

Values of relatives were seen as important, especially for parents, because they give meaning to the perceived meaningless death of their child (Q4). Also for other relatives some comfort was attributed to donation.

Support

To arrive at a good decision it would seem to be necessary that relatives have enough time (Q5), are adequately informed (Q6) and receive the best possible care (Q7). A plea was made for an exempt professional to guide the process (Q8). The ICU staff had never before considered a more specialised form of guidance in decision making, nor support by an independent counsellor, thus rejecting the suggestion to introduce such a professional.

Theme 2: Donation request from the perspective of health care professionals

ICU staff said that they did not always feel comfortable with a request. The requestor has to deal with, in their eyes, the seemingly irreconcilable interests of the patient, the relatives and those on the waiting list. The request is a collaborative process between doctor and nurse, with the possibility of inviting the transplant coordinator for a detailed explanation. In the following paragraphs we will elaborate more on the different categories from the perspective of the ICU staff.

Requestor

The donation request is made by the physician treating the potential donor. He is assisted by nurses, who, –as participants said–, play an important role in the total requesting process. Sometimes they are able to inform the physician, prior to the request, about the views of the patient or the relatives on the subject of donation. The relation between requestor and relatives is seen as important; ‘trust’ is a key word (Q9). It is important to identify a patient as a potential donor. Although physicians said that they usually tend to go for the maximum outcome (donation after brain death), they said that they would also be content with an optimum outcome: if donation after brain death is impossible, one can try to go for a donation after circulatory death (Q10). The most important task is to provide clear information on the patient’s situation and specifically to explain brain death. The donation request requires special communication skills and attitude, especially empathy. Training and experience were highly recommended to deal with the request task (Q11).

Context

ICU staff usually underscored the principle of decoupling. They deliberated on when a donation request could best be made: after a complete brain death procedure or based on the clinical view. If relatives brought up the issue of donation themselves, the request could be made at an earlier stage as opposed to in a situation where relatives express apathy as a mourning reaction (Q12).

The context in which the question was raised was described as extremely delicate. As one physician put it: it is always ‘the most difficult question at the most difficult moment; besides it is very emotional for both the requestor and the relatives’. At times, this made it inconvenient in a sense for the requestor. ICU staff were aware that the donation request could give rise to a lot of emotions. The request was often made to people who were considered unable to think clearly because they were exhausted, although this should not be a reason for not raising the question. The decision of the relatives depended on the timing of the request (Q13).

Interests

ICU staff have to deal with the interests of the patient, the relatives and also those on the waiting list. Sometimes these interests seem irreconcilable, especially when relatives refuse donation in spite of a donor registration. In most cases, doctors and nurses accept the decision of the relatives (Q14). Transplant coordinators explicitly stated that they considered all interests (Q15). Transplant coordinators recommended a person-oriented approach: try to discover relatives’ motives for refusal, find out if they are capable of making a decision, consider their need for empathy, counselling, information and quiet or rest, and continue caring for their beloved one with respect and dignity. Rather than treating relatives as victims (Q13), transplant coordinators were more inclined to negotiate with them (Q16).

Brain death

Brain death is a difficult concept to understand and to explain, even for ICU staff. It would seem better to make the donation request after the diagnosis of brain death, than after the prognosis of brain death; after such a prognosis relatives sometimes chose donation after circulatory death, instead of waiting for donation after brain death to become possible (Q10).

Feeling comfortable with the donation request

ICU staff said they felt uncomfortable with relatives refusing donation in cases of positive registration. A tension existed between acting on legal, ethical or humanitarian grounds. ICU staff expressed their solidarity with the patient and insisted on the autonomous choice of the patient in cases of positive registration. They often reacted empathically to the viewpoint of the refusing relatives (Q17).

Some members of the ICU staff said they experienced the donation request as extremely difficult. Others said that it might be more difficult for the ICU staff than for the relatives.

Personal opinions regarding organ donation

ICU staff remarked that the practice of organ donation can lead to an affirmation of one’s personal ideas about donation, yet it can also lead to a change of opinion, especially for nurses. In fact, some withdrew their registration as a donor (Q18).

Theme 3: Care for relatives after discharging

Relatives who gave their consent received more aftercare (on behalf of the transplant coordinators) than those who refused. ICU staff therefore thought that they ran a lesser risk of being informed about regret in cases of refusal (Q19). Even if ICU staff did have contact they did not ask about possible dissatisfaction with the refusal by the relatives (Q20). Also, relatives did not mention regret spontaneously because that seemed to be a difficult thing to do (Q21). So the subject remained undiscussed.

Theme 4: Organ donation in society

The donation request is influenced by the way organ donation has been regulated in society (law, regulation by the donor register, education, media).

Law and organ donation

ICU staff compared the Dutch legal systems (opt-in) and noticed in discussion advantages in the Belgian system (opt out) (Q22).

Donation register

ICU staff pleaded for an obligatory system of registration (Active Donor Registration), which was conceived as a testament (last will) of the patient. They will carry out this last will (Q23).

Organ donation as a societal theme

ICU staff observed a lot of prejudices and a lack of information about organ donation in society (Q24).

Discussion

Our study partly confirms findings of earlier research [22]. ICU staff were informed about nearly all factors that influenced the donation decision in the direction of consent: timing the request, decoupling, experienced requestor, empathic attitude, explanation of brain death, knowing the patient’s wishes and (dis)agreement amongst relatives. They knew which measures to take to support relatives in their decision making: giving time and providing information to come to a decision, giving good care and attention to patient and relatives [27]. Even so, transplant coordinators observed that some physicians gave relatives the impression that they had to decide rapidly. So in real life the best practice was not always carried out.

A new aspect arising from our research is that Dutch ICU staff seldom encountered regret from relatives about their donation decision. ICU staff were not familiar with the aforementioned decision stability literature [13–16]. Moreover, from their own practice they did not know whether relatives were (dis)satisfied with their decision. Even when staff did have aftercare contact, the motto seemed to be: “Don’t ask, don’t tell”. ICU staff only assumed regret in cases where the patient’s wishes had been expressed in the donor register and relatives had gone against these wishes. Most physicians were inclined to retire from the consultation room following a refusal, hoping to prevent traumatic memories by not insisting too much on consent. Transplant coordinators were more inclined to ask for motives for refusal and to negotiate about the objections, but are seldom called in after initial refusal.

Remarkably, ICU staff mainly focused on cases in which relatives refused donation, despite their beloved one having been registered as a donor. ICU staff did not seem to be aware that this happens only in exceptional cases :6% at the average in the years 2009-2012, that means approximately five cases each year in the Netherlands. Less exceptional (67%) are refusals when the donor was not registered or the register was not consulted (14%). As far as we know no data have been published in the Netherlands about regret after refusal. Unpublished data from an earlier mentioned research project [27] revealed 19% doubt or regret following refusal (11 out 57). If we use this percentage as indicative, one can assume that focusing on the group who tend to refuse in an uncertain situation ‘might deliver more organs’ in the Netherlands, perhaps more than 50 donors each year. However, our interest is not primarily to increase consent rates, but to make more relatives feel satisfied with their decision. We assume that paying more attention to the decision process can serve both intentions: less regret, more organs.

Interestingly, only wishes expressed in the donor register were mentioned as a source of information. Yet donation intentions can also be determined from private conversations or be attributed to the potential donor, derived from his lifestyle and value system [28]. This strategy of discovering patients’ donation preferences had not been discussed in the focus groups. As mentioned, relatives were seldom asked why they had refused donation and were not encouraged to reconsider their decision. However, if relatives were encouraged to (re)consider the values of the patient, it might be possible to discuss how organ donation can fulfil those values. This approach, where more attention is given to the values of the potential donor as attributed by the relatives, has not yet received full attention, and might, as we hypothesise, lead to a more stable decision and maybe even more cases of consent.

Advice

Although our focus group participants were unaware of the number of relatives who may regret their refusal, they made at least four remarks, which may serve as advice. First, they underscored the suggestion in a recent thesis [29], not to request a donation too quickly. Although decoupling as a concept is more than 20 years old [14], it is not general practice in the Netherlands [30]. In fact, brain death determination often does not happen at all, because when a request is made too soon, relatives refuse donation in advance [31, 32]. Second, transplant coordinators in our focus groups advised concentrating on communication with relatives, rather than insisting too much on donation. These suggestions have been affirmed by research, which demonstrated that support from a trained donation professional, who was not part of the treatment team, led to more consent in a natural way. Time spent with the family in combination with such a well-trained donation professional made the family decision to consent or refuse donation a well-considered one (as well as proving to have a positive impact on the family consent rate) [27, 29]. Although collaborative requesting [1, 2, 11] is not a practice in the Netherlands, it might well be considered. Third, giving time, as suggested by some participants in our research, is important and is underscored by literature mentioning that initial decisions are rarely withdrawn [7], many refusals are not based on deeply held views [14] or correlate with the feeling of not having enough time to discuss donation [16].Finally, as one participant noted, ‘being comfortable with the request’ means not giving the impression of being stressed and not pressing the relatives into making a rapid decision.

So giving relatives time and room to decide without pressure, yet asking them to (re)consider the values of the patient and how organ donation can fulfil those values might, as we hypothesise, contribute to less relatives regretting and more organs. This hypothesis deserves further investigation.

Strength and constraints

The approach with monodisciplinary focus groups and mixed groups gave us differentiated information on the three professional groups engaged in the donation request. Participants work in UMCs covering around 80% of all Dutch transplantations. As this is a study of ICU staff in five transplant centres in the Netherlands, one cannot generalise the findings in other situations in which the donation request has been made. Some advice has been directed at the Dutch situation, whereby the donation request was usually done by the treating physician prior to official brain death clarification [32]. Other proposals in this study might also have advantages in other countries.

Conclusions

ICU staff were not aware of (dis)satisfaction with donation decisions by relatives. On the whole they accepted relatives’ decisions, even if those relatives did not follow the patient’s wishes. ICU staff were aware of nearly all factors influencing the donation decision in the direction of consent, and they knew which measures were necessary to support relatives in their decision. We hypothesise that giving more time and inviting relatives to reconsider their initial refusal will lead to a more stable decision and possibly more consent.

Authors’ information

JG, WS and AV are hospital chaplains, CPE supervisor of the Department of Pastoral and Spiritual Care. They all have a degree in theology and are ordained as ministers in their own church.

Moreover, JG has a degree in bioethics and social sciences, WS (PhD) has a degree in social sciences, and AV (PhD) has a degree in linguistic sciences.

MVD and EL are Professor (PhD) in medical sociology (MVD) and medical ethics (EL), specialists in qualitative research at Nijmegen Centre for Evidence Based Practice, Radboud University Medical Center.

CH (MD, PhD) is head of the neurological ICU of Radboud University Medical Center.

AH (MD, PhD) was scientific director of the Dutch Transplant Foundation and Professor at Radboud University Medical Center.

In their daily work, JG and CH are engaged with eligible brain dead donors and their relatives.