Benefits of Having Organ Donation Coordinator Talk to Families

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Decision making on organ donation: the dilemmas of relatives of potential brain dead donors

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Abstract

Background

This article is part of a study to gain insight into the decision-making procedure by looking at the views of the relatives of potential brain expressionless donors. Alongside a literature review, focus interviews were held with healthcare professionals about their part in the request and decision-making process when post-mortal donation is at stake. This article describes the perspectives of the relatives.

Methods

A content-analysis of 22 semi-structured in-depth interviews with relatives involved in an organ donation decision.

Results

Three themes were identified: 'conditions', 'ethical considerations' and 'look dorsum'. Weather were: 'sense of urgency', 'incompetence to determine' and 'agreement between relatives'. Ethical considerations result in a dilemma for non-donor families: aiding people or protecting the deceased'south body, especially when they do not know his/her preference. Donor families respect the deceased's terminal volition, mostly confirmed in the National Donor Register. Looking back, the majority of non-donor families resolved their dilemma past justifying their determination with external arguments (lack of time, information etc.). Some non-donor families would like to be supported during controlling.

Give-and-take

The discrepancy between full general willingness to donate and the actual refusal of a donation request can be explained past multiple factors, with a cumulative effect. Firstly, one-half of the participants (almost non-donor families) stated that they felt that they were not competent to decide in such a crisis and they seem to struggle with utilitarian considerations confronting their wish to protect the torso. Secondly, non-donor families refused telling that they did not know the deceased'due south wishes or contesting posthumous autonomy of the eligible. Thirdly, the findings emphasise the importance of Donor Registration, because it seems to prevent dilemmas in decision-making, at to the lowest degree for donor families.

Conclusion

Discrepancies between willingness to consent to donate and refusal at the bedside can be attributed to an unresolved dilemma: aiding people or protect the body of the deceased. Non-donor families felt incompetent to make up one's mind. They refused consent for donation, since their deceased had not given whatsoever directive. When ethical considerations do non pb to an unambiguous answer, situational factors were pivotal. Relatives of unregistered eligible donors are more than prone to unstable decisions. To overcome ambivalence, coaching during decision-making is worth investigation.

Peer Review reports

Background

In holland, relatives of potential brain expressionless donors must give their consent to effectuate organ donation. A majority of the Dutch population land that they are willing to be a donor [1]. Yet, merely 44 % of all adults have registered in the National Donor Register. Of those registered, 61 % declare a willingness to consent to donation, 27 % pass up consent for donation and 12 % exit the decision to their relatives or an appointed person [2]. When their deceased had registered as a donor in the National Donor Annals, nearly all Dutch relatives (94 %) followed the wish of the potential donor [3]. In cases, in which the deceased did not register, or had registered that the determination was to be left to his relatives, the relatives have complete authorization to decide. These cases business relationship for 75 % of all deceased qualifying for donation. In these cases, 67 % of the relatives refuse donation on behalf of the deceased potential donor [3]. This presents a large contrast with the general willingness of the bulk of the Dutch population to donate.

Research suggests that the difference between general willingness and the actual decisions made by relatives might be caused by a collision of the values of relatives with those of potential donors [4], and therefore present relatives with a dilemma. It has also been suggested that relatives turn down to give consent, because they practise not want to be involved in the donation procedure [five] and, because of a lack of competence to make up one's mind [6], as relatives are overwhelmed by emotions preventing them from thinking conspicuously, understanding information and asking pertinent questions [vii, eight].

Research has as well demonstrated that relatives ofttimes regret their determination afterwards, particularly when they refused consent for donation [9–thirteen].

The aim of this written report was to gain insight into the decision-making process past looking at the views of relatives of potential brain dead donors. The ethical considerations i.e. the values, motives and convictions of relatives (also every bit of potential organ donors) that were expressed to reach the all-time possible conclusion were explored, also as if relatives regretted their decision and if they would have liked to accept received some support during the decision-making process subsequently the donation request. Offering support in clarifying values is not standard process, and information technology is non known if relatives would appreciate such an offer. This issue was too explored.

Methods

Research blueprint

A qualitative written report was conducted by interviewing relatives of 12 cases, in which consent for donation was given, and nine cases (ten interviews, because of split talks with divorced parents of a child), in which consent for organ donation was refused. A semi-structured interview guide was adult (Table one) for the face-to-face interviews. Topics for the interview were derived from the research aim, the review of the literature [14] and the authors' and others' [15] experience in the field of organ donation. Ethical categories were explicitly involved.

Table 1 Topics for the interviews

Full size table

Recruitment menses and procedure

The participants were proxies of potential donors from the Radboud university medical heart in Nijmegen, the Netherlands, betwixt 1st October 2008 and 30th September 2012 and from the Sint Elisabeth Infirmary in Tilburg, the Netherlands, between anest October 2010 and thirtythursday September 2012. But relatives engaged in conclusion-making on post-mortal organ donation were included. By purposive sampling, the number of relatives who gave consent for donation was similar to the number of relatives who refused consent for donation.

Relatives gave consent to the treating physician of the potential organ donor or to one of the transplant coordinators to disclose their accost to the Primary Researcher. Consent for disclosing was granted in 52 cases. Relatives were asked by letter of the alphabet for an in-depth interview regarding their experiences with the donation request. Interviews were held with 24 participants, who provided written consent to exist interviewed. 1 interviewee was excluded, because he had withdrawn from decision-making and a 2nd was excluded, because they had idea that they had granted consent for donation, whilst the doc had understood that they had refused consent.

The 22 remaining interviews were held with x families (17 participants), who refused to consent to donation, nine families (14 participants), who gave full consent to donation and three families (eight participants), who did not give permission for donation after brain decease (DBD), just merely for donation after circulatory death (DCD), whilst DBD was possible (Table 2).

Table 2 Participants and their relatives

Full size table

Permission for the recruitment procedures was obtained from the relevant Research Ideals Committee of both hospitals.

Data collection and measurement

All of the in-depth interviews [16] were carried out past the Primary Researcher, who is an experienced pastoral counsellor. All participants were visited at home, on average, within iii months following the expiry of their family fellow member. Each interview lasted between 43 and 99 min (mean = 69 min). All interviews were recorded past a voice recorder and transcribed by a Secretary. The transcripts were checked by two Researchers. A summary of the transcripts based on the topics of the interview guide (Tabular array i) was approved by the participants.

Analysis

The first three interviews were coded by two Researchers. They compared their results, and the Primary Researcher subsequently designed a codebook in cooperation with an Ethicist. With this lawmaking book, all other interviews were analysed by two Researchers using Atlas.ti 6.2.28©. The Ethicist checked their codes by sample. Consensus was reached on the attribution of the codes to the quotations. No new codes emerged afterward the 17th interview, thus saturation [17] was reached (Fig. one). Finally, codes were concentrated in categories and combined to themes related to the original research questions.

Fig. 1
figure 1

Saturation of codes in the interviews

Total size prototype

Results and word

Thirty-iii codes were identified, divided (in bold text) into nine categories, and resulted in iii themes (Fig. two; Table three).

Fig. 2
figure 2

Code tree

Full size image

Tabular array 3 Code volume – with definitions

Full size table

The first theme concerned the weather for decision-making after the donation request, the second theme related to the ethical considerations in decision-making and justification of the decision. The 3rd theme concerned the look back at the conclusion and the controlling process. Illustrative quotes for the categories are presented in italics.

The term 'participants' refers to the study participants and 'relatives' to the whole group (study participants and other persons engaged in the decision-making process).

Full general observations

Since virtually interviews were planned relatively shortly after the decease of their family fellow member (median 85 days), many of the participants were in the process of grieving. They explained how their lives were turned upside down by the sudden death of their partner, child, parent or sibling. Participants frequently had some kind of re-feel of the days in the infirmary environment, when talking about the issue, and sometimes, details of the elapsed time were vague. Some of the participants explicitly told united states that the interview had a healing role and turned out to aid them cope with the tragic event.

Theme one: weather for conclusion making by relatives of potential brain expressionless donors

The decision-making process was described past the relatives of potential brain dead donors, every bit circuitous, primarily because relatives had to make a decision on behalf of the deceased (surrogate decision). Three conditions contributing to this complexity were mentioned: [i] the time limit to make the decision created a sense of urgency; [2] the consent for donation asking was made immediately after the relative had heard that a beloved one had died or was expected to die of brain death, making it hard to focus on the request, because relatives were grieving. Half of the participants (most relatives who refused consent for donation = non-donor families) said that they were not competent to make up one's mind in such a crisis. "The problem is that, often when the dr. asks something, although yous consciously hear the question, do you lot actually digest the data coming in? Because you lot are preoccupied by other things, you lot are dealing with grief or just…." (R03). [3] The decision had to be agreed upon by a group of relatives. Initial disagreement between relatives –which occurred within both groups – was always overcome; agreement betwixt relatives was mentioned as conditio sine qua non by the participants of both groups.

Theme 2: Ethical considerations

Considerations of relatives as well as those of the potential organ donor - overview

In describing their decision-making process and providing justification for the last decision ('yes', 'no', or 'yes with restrictions'), the participants mentioned different values, motives and convictions – their own and those of the potential donor. Specific considerations tin can play a very important role in the deliberation of non-donor families, whereas they were irrelevant for relatives who consented to donation (= donor families) and vice versa.

Values are used to justify the decision. The values 'aiding other people' or 'giving people a ameliorate life', 'small attempt, groovy benefit' (like shooting fish in a barrel rescue), 'reciprocity' or 'solidarity' were mentioned past all participants, whereas 'integrity' was important for not-donor families only. "We were 99.9 % sure that he did not desire that [donation]. Despite our idea that you lot should help people when you can, it's still his body". (R07) 'Living on in other people' was seen as a specific consideration to give meaning to organ donation. "Nosotros are very proud of her, because she saved the life of 3 people. This gives me a feeling of support…. she is non really dead. A part of her lives on in someone else." (R06) Donor families referred to this value sometimes as a kind of comfort or relief in their grief. Participants rarely connected their mentioned values to religious views or spirituality.

Motives signify readiness or reluctance to act. Motives were mostly used equally a applied objection contra donation: non-donor families said that it was difficult to decide on behalf of another person or words as: "If he had actually wanted organ donation, he would certainly have registered". (R33). Other motives that were mentioned: the donation procedure takes also long; one cannot be present at the moment of visible decease; and organ donation interferes with funeral or burying rituals.

Convictions signify the authenticity of the decision, simply may lack rationality or evidence; they are mostly expressed without any motivation pro or contra organ donation: "Actually, I accept to say that, when I turned 18, I received that form [=document for registration, JdG], and I did non have to remember too much almost it. I but signed information technology [opted for donation, JdG], considering I think it is a normal thing to do". (R16). Most convictions lead to a refusal of consent for donation: 'organ donation is a reason for premature expiry'; 'life is needlessly prolonged to obtain organs' or 'the potential organ donor has suffered plenty'. Some families refused consent for donation, because of the anonymity of the recipient.

Reviewing all ethical considerations, donor families sometimes mentioned that the request to consent to donation placed them in a dilemma, which they could hands resolve, whereas many non-donor families held ambivalent feelings: "I would actually beloved to aid people, and I know for sure that my Dad would take wanted that besides. But it would be another major blow to let Dad fight for so long and so the organ went to someone, who did not deserve it, in his opinion, or contact [with the recipient] was not possible and we cannot encounter what good things Dad could however do". (R27).

In balancing all ethical considerations, donor families and non-donor families came to different decisions, past giving prevalence to other values, motives or convictions. Rather remarkable is the fact that most donor families endorsed a utilitarian approach of organ donation: they meet torso parts as worthless subsequently expiry, then they tin hands give them abroad to someone who needs them ('like shooting fish in a barrel rescue'). Donor families emphasise 'aiding other people', 'giving them a meliorate life' or'reciprocity' as important values in the field of organ donation. Organ donation offers a kind of comfort to them, considering information technology gives significant to an unexpected death. "I observe and then that it even feels like a kind of comfort. I am not only mourning the loss of my Begetter, but I as well know that he has washed a very good human action. I can talk about that with pride, even though my Male parent has just died. And I experience that to be a tremendous help in the mourning process". (R38). Not-donor families, on the other hand, emphasise the integrity of the torso, both from their own perspective and from that of the eligible donor. They experienced the need to protect the body of the deceased, often combined with the confidence that they have the right to brand decisions apropos the dead body.

Specific considerations endorsing refusal of consent or consent for DCD instead of DBD

Motives mentioned by non-donor families endorsing refusal for consent were also recognised by donor families. Half of the donor families affirmed that the organ donation procedure took besides long. However, for donor families the elapsing was not, by itself, the reason for refusal of consent; a few of the donor families even saw the extra time every bit an advantage. For i not-donor family though, the long procedure (combined with the anger about the utilitarian arroyo of the physician) was the compelling reason backside withdrawal of their initial consent: "At a quarter to eight, we said…nosotros're quitting. That was when we heard that there was no longer a coughing-reflex and that they could kickoff the process, which could terminal ane and a half twenty-four hour period, or maybe ii or 3 and a half days. That was when we decided to pull out."(R25). The long donation procedure was the primary reason for three out of the twelve donor families to agree with a DCD-process, although a DBD was possible, next to their wish to be nowadays at the moment of visible death.

Both donor families and non-donor families mentioned the special significance of some organs and tissues, especially those of the heart, pare and eyes: "NN felt that the heart had beaten merely for his Begetter, so it should not exist reserved for transplantation." (R37). For non-donor families, the removal of these organs was an extra consideration for refusal of consent. For a few donor families the removal of the heart was the primary reason to choose for a DCD procedure, rather than a DBD.

Whose stance prevails?

Of import for the conclusion was (a) the opinion of the eligible donor on organ donation (relatives' knowledge of that stance and registration in the register), (b) the opinion of the relatives themselves on organ donation (either registered or non registered in the national donor register) and (c) the opinion of the participants who must decide about the body or the organs of the deceased: the deceased himself, the relatives or the dr..

The interviewed donor families and non-donor families differed on all iii points. a) It was known from all but ane eligible donor that they were positive about organ donation; the majority had registered as a donor. On the other manus, none of the not-donors had registered. Their stance on organ donation was by and large unknown; if known their opinions were both in favour of, and confronting organ donation. b) But some participants of the non-donor families were positive about organ donation (a few had registered), whereas most donor families were in favour of organ donation (the majority had registered). c) Remarkably, the majority of the not-donor families felt they had more correct to decide almost donation than the deceased, considering they had to live on with the decision, whereas all donor families greatly valued the last volition of the deceased.

Theme three: Look dorsum

The decision - evaluation

Most participants could justify their conclusion for themselves afterwards. Although near all participants explicitly stated that they did non regret their decision, half of the non-donor families did not persist in their conclusion and explained to remain ambivalent on their decision, especially non-donor families, who had experienced the decision equally a dilemma. Most of them disclosed that they were incapable of making a well-considered conclusion and continued to feel clashing in weighing their ain values against the potential organ donors' values or weighing the interests of the potential organ donor against those of the people on the waiting list. They thought that they might possibly have given consent if: they had more than time; were prepared ameliorate; were told in advance that the process takes so much time; the donation request would have been posed in a more empathic and less technical mode; or if physicians would have emphasised that donation can save other lives. I donor family told that their deceased would non have registered, if he had known what the procedure entails.

Improvement of the decision process/possibilities of supporting relatives

Non-donor families came up with more than suggestions for improvement of the decision-making procedure than donor families. Flaws that were most often mentioned included: 'lack of information'; followed by 'a curt period of time to decide': "Yes, and that happened in 1 conversation, in like, v minutes. So I remember, well, how can I determine so quickly about that?" (R25). Both donor families and not-donor families stated that the public information about the length of the donation procedure was non clear.

When asked whether they would accept appreciated a kind of back up or counselling around the decision making procedure, half of the non-donor families gave an affirmative answer, whereas the majority of the donor families would have declined such an offer. Those who would have appreciated support wanted someone like a coach or a buddy to be nearby during the whole stay in the hospital: "When I await back, I would have institute information technology quite nice if they had said like… well, nosotros take a counsellor whom you have met before. He will come up too and talk everything through, considering these are far-reaching decisions, he will but stop by later to visit you". (R28).

Participants who did not need support for themselves, could hands understand that for others counselling would exist helpful, for example, when there is no agreement betwixt relatives, when people are incompetent to decide because of a stupor, when they experience picayune back up from their relatives, or when the wish of the deceased is unknown. The kind of support mentioned was arbitration (when at that place is disagreement betwixt relatives), creating a pause for reflection in a crunch, giving data and caption about organ donation, being a double-decker in decision-making or during emotional reactions. This task could be attributed to unlike professions (Transplant Coordinators, Social Workers, Psychologists, Hospital Chaplains), acting as a confidant.

Discussion

The discrepancy between general willingness to donate and the bodily refusal of a donation request can be explained by multiple factors, with a cumulative effect.

Firstly, half of the participants (most non-donor families) stated that they felt that they were not competent to make up one's mind in such a crisis, which is confirmed past other research [half-dozen]. The emotional crunch might pb to beingness unable to think of sufficient ethical considerations. The participants of this report reproduced far fewer considerations in their crisis than the respondents in 'normal' circumstances in the studies of Newton [18]. Furthermore, they were confronted with contradictory considerations pro or contra. Many considerations mentioned by the participants were similar to a number of 'beliefs' in the meta-study of Newton [xviii], simply could lead to ambivalence. Just equally Sque, information technology was discovered that relatives can struggle with utilitarian considerations against their wish to protect the torso [four, nineteen, 20]; for non-donor families in the sample, this could lead to an unresolved dilemma. In dissimilarity to Newton's study, the 'integrity' consideration was non religiously founded, peradventure, considering most Dutch people practice not experience their spirituality in an institutional style [21]. Organized religion was not mentioned by our participants as influential. Some other difference with Newton's study is that the interviewees in this study never used mistrust of the medical profession every bit a consideration.

To overcome the incompetence to decide, it is suggested to wait with the donation request to give relatives some time to accept the decease of their family member. Thus, this study underscores the importance of decoupling, which is brash by literature [10, 22].

Secondly, the majority of non-donor families did not know the deceased'due south wishes. Bramstedt et al. reported that when the wish of the deceased is known, families feel themselves ethically obliged to make a decision that represents the values and preferences of those whom they represent [23]. Indeed, the donor families in this written report did not written report much distress in decision-making, when they could honour the expressed preference of their deceased. However, non-donor families felt distress, considering they were –in their opinion– the heirs of the body and had the deciding vote. These non-donor families thought they had more right to decide about the body in their own fashion, because they had to live with the decision. Thus, considering the determination as a surrogate decision [23] –which is also the intention of the Dutch Law on Organ Donation– might apply to donor families but not to not-donor families. Posthumous autonomy is contested by non-donor families. When forced to make a surrogate conclusion, some not-donor families refused consent for donation, because their deceased had not given any directive. That confirms findings that state that families experience 'left in the night' when they have to make up one's mind on behalf of the deceased person [5, 23]. Helping relatives to call back what the deceased would take wanted, elucidate prejudices and enumerate considerations might back up a well-considered decision [24]. This arroyo seems worth investigation.

Thirdly, the findings emphasise the importance of Donor Registration, because it seems to prevent dilemmas in controlling, at least for donor families. Nearly all donor families had a concord on the registration in de National Donor Register. Relatives of deceased, who had not registered in the National Donor Register, were more inclined to remain ambivalent in their decision. Their dilemma could not be resolved by weighing values and convictions. In these cases, they justified their determination with arguments derived from the context (lack of time, information etc.). Non-donor families did not regret their decision, but half of them remarked that their conclusion could have been unlike, provided that the context had been different. This illustrates the instability of the conclusion, an instability that was too found in other inquiry [9–13]. To resolve their dilemma, a form of support might be desirable. Half of non-donor families would accept accustomed a form of (actress) back up, whereas nearly all donor families would have declined information technology. A long-term contact as suggested by Aldridge [22] in combination with a well-trained donation professional can stimulate the family to decide in a well-considered way and might have a positive impact on the family unit consent rate [25].

Equally separate point, refusal for consent was more often than not defended by various considerations confronting a complete or a partial consent for DBD. The duration of the donation procedure and/or the exclusion of specific organs (especially heart) and/or the wish to be nowadays at the moment of visible expiry were, for some non-donor families, a compelling reason to pass up donation, and for iii out of the twelve donor families to agree only with a DCD-procedure, although a DBD was possible. In this report, a DCD was not suggested to any of the non-donor families who refused to give consent. Offering the possibility of DCD (when possible), in instance the relatives refuse consent of DBD, might facilitate consent in a subgroup of non-donor families, when relatives have objections considering of the time needed for a donation procedure, the wish to exist present at the visible decease, or the exclusion of organs such every bit the heart.

Forcefulness and constraints

This report adds a new perspective to the literature on controlling on organ donation, as many non-donor families were interviewed. Although the sample was not representative, a qualitative comparison of donor families and non-donor families could be fabricated to provide a unique insight into the reasons why non-donor families refuse consent for organ donation. The study was retrospective and explorative. To confirm the suggestions made, further research (an intervention written report) is required.

Conclusions

Discrepancies between willingness to consent to donate and refusal at the bedside tin can be attributed to an unresolved dilemma: aiding people or protect the body of the deceased. Non donor families feel incompetence to make up one's mind and refused donation, whilst their deceased had non given whatsoever directive. When ethical considerations do non lead to an unambiguous answer, situational factors were pivotal. Relatives of unregistered eligible donors are more prone to unstable decisions. To overcome long term ambivalence, coaching during decision-making is worth investigation.

Ethical considerations

The protocol was approved by the Institutional Review Lath of the Radboud university medical eye, Nijmegen holland (permission was given with number ABR nr NL.21205.091.07 d.d.ten June 2008) earlier the study commenced and later by the Institutional Review Board of the Sint Elisabeth Hospital, Tilburg the Netherlands (permission was given with protocol number 1106 d.d.25 March 2011) to get boosted data.

All participants gave their written consent earlier beingness included in the study.

Availability of information and materials

Not applicable.

Abbreviations

DCD:

Donation subsequently circulatory death

DBD:

Donation after brain death

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Acknowledgments

We would like to thank all our respondents for their contribution and openness in the interviews. We give thanks all physicians and especially the Transplant Coordinators, Hans van Zon en Willem Hordijk, for their arbitration in making contact with the respondents. We thank Hans Schilderman for his comments on the concept of the manuscript and Sara Sharpe (on behalf of Radboud in'to Languages) for additional editorial suggestions. For this written report we did not receive any financial support.

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Correspondence to Jack de Groot.

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Competing interests

The authors declare that they have no competing interests.

Authors' contributions

JdG was master researcher, participated in the study design, interviewed participants, did coding and data assay, wrote the newspaper, and directed the concluding version of the manuscript. MvH did coding and data analysis and was co-writer of the manuscript. CH was mediator in contacts between participants and primary researcher and participated in the discussion most the findings. AH was mediator in contacts between participants and principal researcher and participated in the discussion most the findings. WS participated in the written report design (project management) and participated in the discussion almost the findings. MVD participated in the study blueprint, was engaged the construction of the codebook and participated in the discussion most the findings. EvL participated in the study pattern, did coding and data analysis and participated in the discussion virtually the findings. All authors reviewed and canonical the manuscript.

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de Groot, J., van Hoek, M., Hoedemaekers, C. et al. Decision making on organ donation: the dilemmas of relatives of potential brain dead donors. BMC Med Ethics 16, 64 (2015). https://doi.org/10.1186/s12910-015-0057-ane

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  • DOI : https://doi.org/x.1186/s12910-015-0057-1

Keywords

  • Organ Donation
  • Donor Family
  • Donation Later on Circulatory Death
  • Potential Organ Donor
  • Eligible Donor

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Source: https://bmcmedethics.biomedcentral.com/articles/10.1186/s12910-015-0057-1

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