Public preferences for the allocation of donor organs for transplantation: Focus group discussions

Abstract Background Deceased donor organs are scarce resources because of a large supply‐and‐demand mismatch. This scarcity leads to an ethical dilemma, forcing priority‐setting of how these organs should be allocated and whom to leave behind. Objective To explore public preferences for the allocation of donor organs in regard to ethical aspects of distributive justice. Methods Focus groups were facilitated between November and December 2018 at Hannover Medical School. Participants were recruited locally. Transcripts were assessed with content analysis using the deductive framework method. All identified and discussed criteria were grouped according to the principles of distributive justice and reported following the COREQ statement. Results Six focus groups with 31 participants were conducted. Overall, no group made a final decision of how to allocate donor organ; however, we observed that not only a single criterion/principle but rather a combination of criteria/principles is relevant. Therefore, the public wants to allocate organs to save as many lives as possible by both maximizing success for and also giving priority to urgent patients considering the best compatibility. Age, waiting time, reciprocity and healthy lifestyles should be used as additional criteria, while sex, financial status and family responsibility should not, based on aspects of equality. Conclusions All participants recognized the dilemma that prioritizing one patient might cause another one to die. They discussed mainly the unclear trade‐offs between effectiveness/benefit and medical urgency and did not establish an agreement about their importance. The results suggest a need of preference studies to elucidate public preferences in organ allocation.


| INTRODUC TI ON
Transplantations are widely accepted as the treatment of choice for patients with end-stage solid organ disease and are known to improve the chances of long-term survival as well as the quality of life. 1,2 Unfortunately, the demand for deceased donor organs substantially exceeds supply all over the world. A major challenge is to make decisions regarding how these scarce resources should be allocated and who should be considered to receive an available organ. 3 The resulting decision making and priority-setting is an expression of the ethical dilemma caused by the organ scarcity as well as the life-and-death situation, forcing value judgements between different wait-listed patients as potential recipients. 3,4 In most countries, factors such as time on the waiting list, medical urgency, probability of transplantation success and age under 18 years are used as allocation criteria. 5 The objectives of medical urgency and probability of success can be conflicting, however, since success rates of transplantations typically decrease when urgency increases. 6 Overestimation of the value of post-transplant success may lead to an unacceptable denial of transplantation for patients with the highest urgency, and it may put patients who could also live without transplantation with an acceptable prognosis at an unnecessary perioperative risk. 7 There is a continuous debate about the appropriate choice and relative weighting of various allocation criteria and their impact on fairness. [8][9][10] Therefore, allocating donor organs is a societal task in which not only medical professionals and transplant patients are important key stakeholders, but also the general public. A public consensus on priority-setting in organ allocation is of high relevance because deceased donor organs are a public resource as the supply of organs is dependent on public willingness to donate. It should be noted that individuals donate their organs for transplantation anonymously and altruistically without any possible return, whereby public acceptance of allocation rules and criteria is an important prerequisite for consent to post-mortem organ donation during a person's lifetime. Furthermore, public preferences can be used to inform policy in order to warrant socially responsible allocation systems. 11

| Aims
The aims of this study are (a) to explore public preferences for the allocation of donor organs, (b) to gain better insights into the views and explanations whether and how the public wishes to differentiate between different wait-listed patients as potential recipients and (c) to understand their perspectives on how this public resource should be allocated. This study is part of a wider project on preferences in organ allocation. 12 The preferences used were categorized into a theoretical framework of distributive justice principles which were systematically linked in a systematic review preceding this study, which in return is used to verify the results of the review. 11

| Theoretical framework: principles of distributive justice
Donor organs are allocated worldwide by institutions such as Eurotransplant or the National Health Service Blood and Transplant to recipients without expected return, such as costs or prices. In the consequence, organ trading is internationally banned as criminal activity. Therefore, the allocation procedure by the institutions should match ethical aspects of distributive justice in order to guarantee the best ethically accepted allocation system. In this context, distributive justice is best thought of as 'providing moral guidance for the political processes and structures that affect the distribution of benefits and burdens in societies'. 13 In organ allocation priority-setting, we identified different principles of distributive justice: egalitarianism (treating people equally), utilitarianism (maximizing total benefits), favouring the worst-off (severity of illness/social disadvantages), own fault (demoting and punishing irresponsibility) and value for society (promoting and rewarding social usefulness). Additionally, the medical background and sociodemographic status may impact both effectiveness/benefit and medical urgency. Therefore, these two groups present medical and social risk factors influencing allocation (see Table 1). 11

| Study design
This study chose a qualitative design, using focus group discussions, which unlike quantitative surveys offers a deep insight into participants' views. People's preferences can change after a period of discussion and consideration. 14-16 Therefore, it is important to provide suitable time to discuss the issues and also to reconsider. Furthermore, this design allows analysis of participants' thoughts and interpretations about different allocation criteria as well as how they interrelate them.
Based on a prior systematic review 11 and discussion among the researchers, we developed a discussion schedule which could be used flexibly with three phases: (a) introductory phase about thoughts and attitudes to organ transplantation and allocation, (b) criteria which should be considered and how recipients should be prioritized and (c) a ranking exercises of the criteria identified from phase two (see Table 2 for example and Appendix S1 for the complete version). The ranking exercise used a modified nominal group technique. [17][18][19] This approach was only used in order to receive more information about the relative importance of the discussed criteria for the participants, with the possibility to elucidate a possible group consensus. We pre-tested the discussion schedule in November 2018.
Maximum variation sampling was applied. Therefore, participants were eligible if they spoke and understood German, were at least 18 years old and able to give informed consent. We excluded transplant patients and medical transplant professionals because their perspectives likely differ significantly from those of the public due to fundamentally different interests. The participants were sorted in different groups according to their level of information and experience with organ transplantation and allocation: one group with participants who do not have any information/experience, one who do, and a third, mixed group.
Information and experience were defined as knowing someone who needs organ transplantation or who is already transplanted (relatives, friends or colleagues) as well as being occupationally involved in health care. Overall, we conducted six focus groups, two for each level and two mixed. The participants were purposively sampled to ensure a balance of gender, age and cultural backgrounds, when possible. Participants were offered reimbursement for their travel expenses. The study was approved by the Hannover Medical School Human Ethics Committee (Vote number: 7921_BO_K_2018).

| Recruitment and participants
We recruited participants both through an event series 'patient university' at Hannover Medical School, Germany, and through local online advertising. 'Patient university' is an independent health education institution to increase health literacy in the public, which organizes free events to facilitate a health-and-illness-related discussion between the public and health professionals. 20 We had an information booth where we directly invited people to participate in our study in October and November 2018. The online advertisement TA B L E 1 Theoretical framework: principles of distributive justice (derived from earlier publication 11 )

Medical and social risk factors for effectiveness/benefit and increased urgency
Principles of distributive justice The participants were asked to individually start ranking the criteria by using their five stickers. After each participant allocates their stickers, we sorted the criteria by the respective number of stickers and asked the participants if they were satisfied with the group ranking and gave the possibility to discuss again some ambivalent criteria.
was carried out via websites of the Hannover Medical School and the city of Hannover. Most of the participants (N = 25) applied through the patient university. During the recruitment, we used a short questionnaire that asked about the level of information/experience for our group selection.

| Data collection
The focus groups were facilitated between November and

| Data analysis
The transcripts were assessed with content analysis using the deductive framework method 22

| Participants characteristics
All focus groups included a total of 31 participants involving four to seven participants in each group. Most of them were female (61.3%); the average age was 55.9 (21-83) years, and the majority had no information/experience previously about organ transplantation and allocation (67.8%). Most of the participants reporting experience also knew someone who had already received a donor organ. About half (48.4%) of the participants reported that they have a signed organ donor card, whereas most of them had information/experience with the topic (see Table 3).

| Thematic synthesis
Depending on the level of information/experience, most of the participants had only little knowledge of current organ allocation policy, but all of them recognized that donor organs are a scarce resource forcing value judgements between different wait-listed patients. Therefore, they discussed the need for consideration of various criteria in allocation; however, they found it difficult to decide between equally important criteria resulting in inconsistent preferences. When comparing hypothetical patients (either defined by the facilitators or the participants themselves), they often struggled to prioritize one over the other. Thus, in all focus groups the participants could not agree about which criteria to use to allocate donor organs. They wanted donor organs to be treated responsibly and transplanted into the most urgent recipients with the potential for the best possible outcomes. According to our framework, we categorized the preferences into egalitarianism, effectiveness/benefit, medical urgency, own fault, value for society, medical background and sociodemographic status. In the following, the preferences were summarized and underpinned with direct quotations.

| Effectiveness/Benefit
The benefit from transplantation was an important criterion for all focus groups and was discussed in terms of increasing life as well as benefitting quality of life to reduce the risk of lost opportunities.
Therefore, before an organ was offered to a recipient, participants wanted to ensure that there is a reasonable potential to survive surgery and to live as long as possible without a rejection of the donor organ. Failed transplantation, especially at the stage of the surgery, was not only seen as a loss for the recipient, but also as a lost opportunity for another wait-listed patient. [

| Medical urgency
Besides the maximization of effectiveness/benefit, all focus groups wanted to consider patients who need an organ most urgently to prevent fatal consequences or further organ damage. This was mainly discussed in terms of pre-transplant life expectancy and quality of life. Only the focus groups with experience discussed the quality of life while waiting for a donor organ and concluded that it should be incorporated as an add-on in the evaluation. Overall, participants wanted to save as many patients as possible and not lose anyone while they were waiting for an organ:

| Own fault
The discussion of health-related behaviours and individual role in causing the failure provoked dissent and caused the most moral discomfort between all focus groups. Some participants were very in favour of taking some lifestyle factors such as alcohol abuse, smoking, illicit drug use or non-compliance into consideration. They did not necessarily think that potential recipients with these lifestyle habits were deserving of an organ:

| Value for society
Some focus groups discussed the extent of family responsibility in caring for children or other dependents and the community value such as occupational role or volunteering. Participants found it difficult, however, to judge these criteria, making them unable to use. Instead, all focus groups raised the idea of reciprocity: the participants wanted to give priority for recipients who were also prepared to be a donor themselves before their organ failure. They discussed that reciprocity would lead to more solidarity, appreciation and fairness in the organ allocation pro- During the discussion, some participants saw problems with some groups not being able to give consent to organ donation before their own need for an organ, such as children or persons with dementia.

| Medical background
One of the first addressed criteria was the medical compatibility between donor and recipient, such as blood type compatibility, tissue matching, height and weight, as this would reduce the chance that donor organ function might fail after transplantation. Rejection was viewed as a missed opportunity, and some participants argued that a perfect match also increases the chances of transplantation success. Overall, this criterion was seen as a necessary condition and therefore non-negotiable: […] first, the donor organ has to match, this is a yes or no decision. If it does not match, then I do not need to carry on.

(ID17, FGIV, mixed)
To some extent, the donor and recipient should also be matched on age to increase the durability of the organ and to reduce the number of transplants needed over life. As a further lost opportunity, the participants discussed that the potential recipient should be in good enough health condition to survive the transplantation and not to die of another disease. This was also seen as a possibility to increase the effectiveness/benefit. …not only the sick organ, but rather the whole health of the recipient should be of relevance.
(ID11, FGII, mixed) The only consensus to be reached is that donor organs should not be allocated by sex or financial status. In these cases, all potential recipients should have the same chance.

| Identified trade-offs for the allocation decision
Besides the discussions of relevant criteria, the focus groups also

| D ISCUSS I ON
These are the first focus group discussions of this kind. Overall, no group could establish how to allocate organs and decide which criteria should have higher priority; however, the discussions had identified a considerable number of criteria and trade-offs that influence these preferences. All focus groups concluded that no single criterion should be used as the over-riding respective principle, but rather a combination of different criteria respective principles are relevant for the allocation decision. They assessed that donor organs are scarce resources and should be handled with care, forcing value judgements between different wait-listed patients. Thus, it seemed obvious that when a patient is prioritized, someone else will be disadvantaged and consequently may die without transplanta- Participants' refusal to giving a final answer is likely the result of the understandable human propensity to avoid hard choices whenever possible. That is also the reason why no agreement could be identified and sometimes inconsistent preferences occurred.
Furthermore, in our previous systematic review, we were able to identify numerous trade-off statements that were hardly mentioned in the studies included in the review. 11 The same trade-offs were observable in the current qualitative work, additionally confirming our assumptions.
Separating the groups with experience from the ones without experience, quantitative lifetime before and after transplantation was considered as well as taking quality of life into account. This can be most likely ascribed to the personal knowledge of and experience with transplant patients. We have recently identified similar preferences for the group of professionals: physicians give less priority to criteria if they could lead to a less successful transplantation outcome. 23 Therefore, the extent of personal knowledge and experience has a relevant influence on the consideration of quantitative as well as qualitative success criteria. We were surprised that for all participants the most requisite criterion was the medical compatibility between donor and recipient regardless of the level of experience. They believed in the impact of compatibility and the small probability to find the perfect match, whereby the allocation can be made easier. We argue that in general the public is less knowledgeable about medical issues but they nevertheless assign them a high relevance with respect to organ allocation. This is even more astonishing considering that the allocation is morally and ethically complex with considerable uncertainty and most of the discussed criteria are not inherently medical (eg waiting time, reciprocity or age). These observations lend some weight to a psychological explanation: the participants strive to avoid an ethical dilemma by delegating it to medical experts, who are expected to produce medical criteria of biological compatibility as the conditio sine qua non that shields the public from having to take a position in this dilemma, and which forces a decision leading to individual casualties due to the scarcity of organs. This propensity is indeed surprising, and no effective solution was identified. The obvious approach to alleviate this dilemma would be to optimize organ donation with the goal to improve the currently very low donation rates in Germany. 24,25 Information about the patient's lifestyle and self-inflicted behaviour such as drinking alcohol or smoking was relevant to balance the allocation decision but led to controversial discussions. Participants felt that these criteria are discriminatory because alcohol abuse or smoking is an addiction and therefore an illness; however, they discussed that it may not be ethical to prefer a patient who is responsible for their organ failure when this implies that another patient who is not responsible would not receive an organ. From a public perspective, organ failure caused by alcohol consumption or cigarette consumption is considered as attributable to lower post-transplantation survival rates. Therefore, some participants wanted to avoid this dilemma and used lifestyle criteria as a surrogate parameter for effectiveness/benefit although today's survival rates between patients with and without such behaviour are very similar. 26 Nevertheless, most of the current allocation policies require a drinking or smoking cessation of at least six months before liver or lung transplantation, respectively. This is done in order to allow the patient's organ a chance to recover and to reduce the risk of consumption relapse. [26][27][28][29][30] Overall, all criteria which are normally culturally accepted under equality aspects were seen as surrogate parameters for effectiveness/benefit to avoid the dilemma of discrimination against some subgroups which have an unhealthy behaviour or an older age.
All focus groups discussed the organ allocation system under fairness aspects. It was discussed that the system has to be just, resulting in an equitable and appropriate process of distribution for the whole society. This implies not only the patients who need organs or the transplant professionals who work in this field but rather the public who donate their organs anonymously and altruistically.
Fairness aspects were consistently inherent during the discussions resulting among others in the possibility of reciprocity by prioritizing recipients who have been registered donors prior to their organ failure, as is legitimate in Israel. 31 The participants justified such a rule on the basis that it is fair and will encourage donor registration because 'free-riders' are willing to take an organ while they would likely reject to donate an organ themselves. Furthermore, in the beginning all focus groups related fairness with the German 'transplantation scandals' in the years 2011 and 2012 during which data were manipulated in hospitals to move the patients up the waiting list for livers. As a consequence, the trust of the public about fairness in organ allocation and donation has been destroyed. [32][33][34][35]

| Comparison with previous findings
These results are generally consistent with previous qualitative results, 11 in which most of the criteria were discussed resulting in preferences to save as many lives as possible by maximizing the transplant success while also giving high priority to urgent patients.
It was interesting to recognize, however, that our study was the only one which investigated these preferences without specifying the organ, while the other studies focused on kidney 36,37 or liver, 38 respectively. We state that for the public the specific organ is not as relevant in the discussion. For the first time, the participants in our focus groups discussed also the medical compatibility between donor and recipient and believed that this is the requisite criterion that sets the condition before any other allocation considerations come into play. Furthermore, the criteria about 'own fault' were discussed very ambivalently and some of the participants wanted to consider these criteria as surrogate parameters for effectiveness/ benefit while in the other studies these social judgements were not made. [36][37][38] Interestingly, family responsibility played a role in the two qualitative studies from the UK, 36,38 while an Australian study 37 and ours clearly showed that this criterion should be used under equality aspects.

| Strengths and limitations
Qualitative methods are suitable for understanding people's attitudes, opinions, values and perspectives and therefore enable capturing the importance of the data rather than the frequency of responses. We used a coding scheme based on a deductive category system according to the principles of distributive justice. These strengths, however, also lead to some limitations. First, we cannot be sure that the same results would have been obtained from faceto-face interviews. There may be a danger that some respondents may have given responses that they thought their group members wanted to hear. 39 Second, although we tried to apply a maximum variation sampling and a clustering in different groups, our sample was on average 56 years old so that younger people were underrepresented. Third, we can suppose that people especially interested in the topic of organ allocation and transplantation participated so that we have a possible information bias in the findings. This could be due to the fact that most of the people wanted to discuss about their own choice on organ donation. Moreover, the media presented a new bill for an opt-out system in organ donation in Germany during the data collection process. Fourth, during the discussions, additional themes occurred such as the constitution of an independent council or logistical challenges with the transplantation, whereas reporting these in detail would go beyond the scope of this paper.

| CON CLUS I ON S AND FURTHER S TEPS
In all focus group discussions, the participants knew the dilemma resulting in value judgements between potential organ recipients and the fact that prioritizing one patient likely puts another patient into an increased risk. They did not, however, come to agreement owing to the understandable human propensity to avoid hard choices that would generate disadvantages for certain patients. If the reported results and identified trade-offs were to be quantified in a discrete choice experiment, which is able to elucidate and weight the unclear trade-offs, predominantly those between effectiveness/benefit and medical urgency, recommendations towards a legal framework with higher public acceptance might be obtainable.

ACK N OWLED G EM ENTS
The authors would like to thank all participants who graciously offered their time. Without their participation, the focus groups would not have been possible.

E TH I C A L A PPROVA L
The study has received ethics approval from the Hannover Medical School Human Ethics Committee (Vote number: 7921_BO_K_2018).
We obtained informed written consent from all participants and followed the ethical guidelines of the World Medical Association Declaration of Helsinki.

DATA AVA I L A B I L I T Y S TAT E M E N T
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.