There is a scarcity of organs for transplantation worldwide, and the supply of organs is reliant on public willingness to donate (1). However, it is unclear how community preferences for the allocation of solid organs from deceased donors to potential transplant recipients are incorporated into current allocation policies (2–4). Although community input may be sought, for instance by circulating the proposed policy for public comment, the views and preferences of the community and how they are incorporated in allocation policies are not explicit. Deceased donor organ donation is a community-held resource and warrants the inclusion of community perspectives. In addition, if current organ allocation policies can be better aligned with community preferences and values, there may be consequent improvements in the willingness of the community to donate (5–7).
Deceased donor organ allocation involves assignment of an available organ to a potential recipient according to an allocation algorithm, such as those published by the United Network for Organ Sharing (UNOS) (8), National Health Service UK (9), or Transplantation Society of Australia and New Zealand (3). Traditionally, allocation algorithms were largely based on human leukocyte antigen typing, age, time on waiting list, clinical prognosis, life expectancy, and quality of life (10, 11). However, allocation organizations recognize that selection based on these largely clinical criteria disadvantages certain patient groups: older patients, those with co morbidities and often patients from ethnic minorities (12).Therefore, recognition of the difficulties of balancing often complex clinical criteria with social objectives, such as efficiency and equity, have underpinned recent efforts by policy makers to incorporate broader-based principles in their allocation algorithms (13–17).
Organ allocation decisions extend beyond clinical or economic judgment to entail a social and moral responsibility, which needs to be shared with the community (7, 11). Although organizations such as UNOS seek public comment, members of the community may not be sufficiently equipped to understand the proposed policy and offer a depth and breadth of insight that could be gained from other methods of engaging the community in policy decisions. Some studies have suggested that public perspectives regarding organ allocation are different to those of transplant health professionals (18, 19), and currently, there are few data on community preferences for deceased organ allocation.
This study aims to synthesize published studies that have elicited community preferences for organ allocation. Ascertaining community preferences for organ allocation criteria and the underlying principles for their decisions can help to determine whether current organ allocation policies are consistent with community views, promote better incorporation of the community voice in organ allocation policies, and may indirectly improve public willingness to donate.
Studies that explored community preferences for solid organ (heart, lung, liver, and kidney) allocation were included. Non-English articles were included. Articles were excluded if they focused on health services and policy, nonsolid organ transplantation, and live organ donation. In kidney transplantation, living organ donations are usually directed to a recipient known to the donor. Editorials, reviews, and discussion papers that did not elicit perspectives from the community were also excluded.
MeSH terms and text words for community (public, population) were combined with terms relating to organ allocation then combined with MeSH terms and text words relating to decision making (social values, distributive justice, priorities, values, preferences, and healthcare rationing). The searches were carried out in Medline (1950 to week 4 2009), Embase (1980 to week 5 2009), PsycINFO (1806 to week 2 2009), and EconLIT (1960 to week 5 2009) using a sensitive search strategy (Appendix). We also searched reference lists of relevant studies and reviews, dissertation and thesis databases, and transplantation journals.
The abstracts were screened and then discarded if they did not fit the inclusion criteria. Studies that appeared to include relevant data or information were retrieved, and their full-text versions were analyzed and examined for study eligibility.
Comprehensiveness of Reporting
No checklist for critical appraisal or universally accepted reporting framework is available for qualitative research or quantitative questionnaire studies. Therefore, rather than assessing the quality of each study, we assessed the explicitness and comprehensiveness of reporting of each primary study. This can provide contextual details for readers to assess the transferability of the study findings to their own setting. For the questionnaire studies, we developed a comprehensive list of criteria that were reported in the included studies and included additional items in published guides for designing survey studies (20–22) (Table 2). For qualitative studies, we used a framework that was developed for the reporting of qualitative studies (23), which included criteria specific to the research team, study methods, context of the study, analysis, and interpretations (Table 2). Two reviewers (A.T. and K.H.) independently assessed each study using the respective frameworks, and any disagreement was resolved by discussion. There are no empiric data on the relationship between quality of reporting and the quality of the methods in qualitative and questionnaire research (22, 23). Therefore, we did not exclude or weight study findings based on our assessment of the quality of reporting for individual studies.
Synthesis of Findings
For the quantitative studies, we identified and extracted the attributes for organ allocation assessed and then recorded the findings regarding respondent preferences. For the qualitative studies, we performed a qualitative textual synthesis of the results and conclusions reported by the primary author. We extracted all the participant quotations and text under the heading “results/findings” or “conclusion/discussion,” from each article. These were entered verbatim into NVivo 7, software for storing, coding, and searching qualitative data. For each article, two authors independently coded the text and recorded the concepts that focused on (1) identifying the criteria or attribute assessed, (2) describing each attribute, and (3) the author's interpretations or underlying principles explaining community preferences for each attribute. We analyzed the subsequent articles and translated the concepts from one study to another by adding coded text to existing concepts or created a new concept when needed. Each article was reread to ensure all the text relating to community preferences for organ allocation were integrated. The concepts were examined for similarities and variations, and then grouped into an organizational tree structure of descriptive themes. To develop an analytical model of attributes and underlying principles, we used the mind mapping technique to map the interrelationships between the concepts.
Literature Search and Study Characteristics
Our search yielded 1152 articles. Of these, 1057 were excluded after title and abstract review because they were ineligible. Of the 95 potentially eligible studies, 80 were excluded because they were focused on live organ donation, health services and policy, nonsolid organ transplantation, were duplicate articles, did not elicit community views, or were nonprimary research studies. Fifteen studies were included, involving more than 5563 respondents (one study did not report the number of respondents; Fig. 1). All 15 studies focused on eliciting preferences for how organs should be allocated. No studies assessed preferences specifically for waiting list suitability criteria.
The study characteristics are provided in Table 1. Data were collected by questionnaires (13 studies) or focus groups (2 studies). Of the 15 studies, six specifically focused on liver allocation, two on kidney allocation, two on heart allocation, and five focused on organ allocation in general. The studies were conducted in the United States, United Kingdom, Hong Kong, and Australia.
Comprehensiveness of Reporting of Included Studies
Of the 13 questionnaires (2, 5, 19, 24–34), the comprehensiveness of reporting was variable with studies reporting details on 4 to 10 of the 16 items possible (Table 2). All studies specified the sampling technique used, mode of delivery, and an adequate description of the survey tools. Less than half of the studies reported the response rate. Reported response rates ranged from 26% to 100%. Four studies included qualitative findings and provided participant quotations. Only one study reported piloting of the survey tools. No studies reported whether the surveys were anonymously completed. Of the two qualitative studies (18, 35), one reported 19 (18) and the other reported 23 (35) of 32 items possible (23). Both studies provided details on most items pertaining to participant selection, setting, and data analysis but specified fewer details about data collection methods. In one study, financial support for the participants was reported (35). The two qualitative studies provided respondent quotations and a range and depth of insight into the respondents' perspectives.
For the 13-survey studies, there were 15 attributes assessed by the authors (gender, age, employment, occupation, socioeconomic status, having dependents, citizenship, country of origin, donor status, alcohol, drug use, time on waiting list, previous transplant, prognosis, and clinical urgency). Figure 2 indicates the extent to which respondents in each of the studies expressed a positive preference for each attribute. Five studies assessed prognosis, most (63% to 91%) of the respondents indicated a preference for allocating organs to those who were expected to have a better prognosis. Four studies found that most respondents indicated a preference for younger patients (65% to 75% of respondents) and longer wait-listed patients (63% to 87% of respondents).
We identified seven main themes underlying community preferences for organ allocation from our synthesis of the results and authors' interpretations in each primary study: (1) maximum benefit, to achieve maximum health gain in terms of patient survival and quality of life; (2) social valuation, to base preferences on societal gain; (3) moral deservingness, to consider the “worthiness” of patients based on their social standing and lifestyle decisions; (4) prejudice, to make a judgment based on personal ideological viewpoints; (5) fair innings, to express a preference on the feeling that everyone is entitled to an equal chance at some “normal” span of health, or that patients should be given a chance at first transplant instead of multiple transplants for some; (6) first come, first served, to allocate the organ to recipients who have been wait-listed the longest; and (7) medical urgency, to allocate based on illness severity and saving life (Fig. 3). A selection of participant quotations (in italics) and explanations offered by the authors to illustrate each theme are provided later. The full list is available on request.
Maximum benefit was achieving maximum health gain, mainly in terms of patient survival and quality of life. Ten studies discussed recipient prognosis as a factor in allocation decisions. Most respondents expressed a preference for allocating organs to individuals who were expected to survive the longest with a transplant.
“Members of the general public surveyed agreed that the capacity to survive and benefit should be the most important criterion in the selection of liver transplant recipients” (27).
“The expected prognosis following liver transplant operation caused the least moral discomfort as a criterion for differentiating between patients on the waiting list and was considered to be highly important by all four focus groups. It was felt that greater life expectancy posttransplant, the greater the priority for transplantation” (18).
The respondents deliberated about other gains including quality of life and questioned what difference in the chance of survival between individuals would be significant. Some struggled to conceptualize and disentangle the notion of “benefit” and how it could be assessed, and felt hesitant to express preference based on maximum benefit. For example, they questioned the trustworthiness of blood test results used to determine rejection or prognosis. They also did not want to entirely neglect those with a lesser chance of survival.
“The response to prognosis was rather different in that the efficiency principle remained the overall moral underpinning of this diagnosis. But the informants extended their thinking into benefits other than absolute time gained. They also considered relative time, and quality of life during time gained, and in doing this they came up against the subjective nature of these benefits and the difficulties of making judgements on behalf of others” (18).
“With regard to quality of life, it appears that people are generally utilitarian (give to the best-off and maximize utility) when both potential recipients are in poor shape . . .” (30).
“Seventeen subjects wrote that chance of survival is irrelevant. As one person wrote, ‘Sixty percent versus 80% survival is not a significant difference’” (32).
“I could justify giving the livers to children who had a 100% chance of survival and denying livers to children who had a 0% chance of survival. Any other ratio (90% vs. 10%, 80% vs. 20%, 70% vs. 30%, etc) becomes increasingly difficult” (33).
In one study examining public preferences for organ allocation among children needing transplantation, prognosis was an important, but not the sole factor underlying their choices (34).
Social valuation underpinned considerations for organ allocation based on societal gain or utility. Preferences for patients with dependents were discussed in three studies, employment status and occupation in two studies and citizenship and ability to pay in one study.
Some respondents believed that it would be valid to give priority for patients with dependents, particularly those with young children. The majority did not express any preference based on the patient's occupation, socioeconomic or employment status, citizenship, or ability to pay.
“If it's a woman who's got five children, then it'll affect the children as well but if it's just one person, I mean it's still awful, just awful, but it's a fact of life” (35).
“In all four focus groups, “family responsibilities,” in the form of caring for dependent and young children were expressed as valid criterion for prioritization” (18).
Moral deservingness underscored judgments about whether patients were viewed “worthy” to receive a transplant based on their lifestyle and decisions. Less preference was given, by most respondents, to those engaged in socially undesirable behaviors, especially if it was believed to have caused their illness. These included smoking (28, 31, 32), excessive alcohol drinking (18, 19, 25, 27, 32), crime (18), and drug use (19, 31, 35). One study found that some felt preference should be given to patients who were registered donors (29).
“. . . allocation preferences of the general public are influenced by whether patients' behaviors are said to have caused their organ failure . . . many members of the general public believe that patients with behavior responsible for causing their organ failure should receive lower priority than other patients” (32).
“I would think that if there were two people exactly the same age, the same sort of condition, same match, but one had kidney failure because of natural circumstances and one had kidney failure because of being in a nightclub and taking ecstasy, I would be tempted to give it to the first person” (35).
“The chance of drug use recurrence is too high to make it worthwhile for society. If the patients will continue to abuse their bodies, why waste a precious heart? The intravenous drug users have done too much damage to their other organs, therefore, I do not feel the heart is the sole problem” (32).
“Even when the intravenous drug users were said to have a better chance of transplant success than other patients, and were said not to have caused their own heart failure with intravenous drug use, subjects were only willing to give them one third of transplant organs, while giving the other two thirds to patients with worse transplant prognoses but no history of intravenous drug use” (31).
Conversely, a few respondents argued that smoking and alcoholism may not be the fault of the patients or felt that everyone deserved a chance and should receive equal priority.
“I think we all should have a chance, since most people who started to smoke were never aware of how addictive it becomes” (32).
“I mean alcoholism is just as much a disease as hepatitis if you like” (18).
“Is it fair to discriminate against (Adam) and say he doesn't deserve a transplant because he is in and out of prison and is unlikely to get a stable job? That doesn't seem to me to be a fair justification” (18).
Prejudice was expressed as making a judgment about a particular population group based on a personal preconceived viewpoint. Little was mentioned about prejudice, but it was evident in attitudes toward allocating organs dependent on the patient's country of origin, as demonstrated in one study (26). In this study, the majority were unwilling to deny people an organ transplant based on country of origin. The respondents who were more likely to deny transplants to people from other countries tended to be older and white.
“Country of origin is a relevant consideration in the distribution of donor organs, as revealed by our survey results . . . . members of the general public believe it is inappropriate to transplant individuals from certain countries” (26).
In the context of organ allocation, the fair innings argument was apparent in the view that organs should be allocated such that all patients should have a chance at first transplant or that people are entitled to a “reasonable or normal” life span, thus implying priority for younger patients. Four studies examined preferences for primary transplant candidates versus retransplantation (2, 18, 25, 27), and seven studies examined age as an influencing factor in preferences for organ allocation (18, 19, 24, 25, 27, 30, 35).
Some respondents believed that everyone deserves a first chance and gave higher priority to primary transplant candidates. Also, some assumed that retransplantation implied the patient would have a poorer prognosis.
“The brief discussion around this criterion in all focus groups lent support to the view that it may not be ethical to retransplant an individual when this would mean that another individual waiting for their first transplant would not receive a donor liver as a consequence” (18).
“Public opinion may hold the view that everyone deserves a first chance and that this is more important than giving retransplant recipients a second chance” (25).
Conversely, some believed that retransplant patients deserved a second chance if the transplant failed due to medical reasons.
“I'd rather get somebody right and back to normal than have another stab at somebody who might not be right” (18).
Across all studies, more respondents preferred to allocate an organ to younger patients. They believed that younger people should have a chance to live and expected they would have a better prognosis. However, they had difficulty in defining the age difference threshold that would warrant priority and discussed broad life stages rather than absolute age.
“They all have their lives in front of them. A 70-year-old has had his life he's had the chance to live” (35).
“I have great difficulty between 40 and 60. I don't feel that one has more right than the other . . . 84 is a bit different to 60, because you are nearly at the popping off stage anyway . . .” (18).
First Come, First Served
“First come, first served,” was the notion that organs should be allocated to those who have been wait-listed the longest. Eight studies assessed preference for giving priority to patients who had spent a longer time on the waiting list (2, 18, 19, 24, 25, 27, 33, 35).
In most studies, more respondents expressed that priority should be given to patients who had been waiting a longer time for transplant. Some felt less ambivalent in making decisions that were based on more objective and unequivocal criteria.
“In two focus groups, the length of time already spent on the waiting list was seen as an “automatic” criterion invoking a mechanistic process which helped to avoid making difficult decisions” (18).
“[The participants] were more concerned about the time candidates had already spent on the waiting list and allocation should be on a “first come, first served” basis” (25).
However, some believed that the time on the waiting list was correlated with a loss in life expectancy and expressed a preference for those who had been on the waiting list for the least amount of time.
Medical urgency encapsulated the participants' responses made on the basis of “rescue” and medical need. Rescue captured the participants' response made on the basis of saving life, that is, from imminent death, and the medical need was indicated by preferentially allocating organs to those with a more severe illness.
The respondents felt that allocating resources preferentially should be determined by medical urgency in terms of risk of death (26, 30, 33). They were averse to stating any preferences for the patient's physical characteristics (including gender and age), posttransplant prognosis, lifestyle, social factors, social utility, citizenship or race, time on the waiting list, or if they had received a previous transplant.
“Respondents preferred giving the organ to the person closer to death until the difference in urgency was less than 1.1 months (SD 1.4)” (30).
“These studies suggest that a large proportion of the general public feels that health care should be allocated in ways that help those in greatest need such as patients with severe illness, rather than simply attempt to maximize overall utility” (34).
“Another common reason for distributing the organs equally between the two groups was that some subjects did not believe the prognostic prediction, as one subject stated, ‘The statistics mean nothing! It is chance! There is no biological factor to substantiate the 80%/70% stats!’” (2).
We identified seven main themes underlying community preferences for organ allocation: maximum benefit, social valuation, moral deservingness, prejudice, fair innings, first come, first served, and medical urgency. Despite the emergence of these general themes, there was no evidence of an emerging consensus with evidence rather suggesting conflicting preferences between individuals. Although some community members wanted to achieve maximum health gains, they felt uncertain about what constituted such benefit, and how the benefits could be adequately quantified or qualified. They considered the “social worth” of a patient, and some indicated a preference toward those with dependents. The community also made judgments about the lifestyle choices and behaviors of transplant candidates, and some felt that patients who engaged in smoking, excessive alcohol drinking, crime, and drug use should be given less preference. In deliberating, community members adopted a fair innings approach and felt that organs should be allocated based on the feeling that everyone is entitled to an equal chance at some “normal” span of health and gave priority to younger patients. By the same argument, the community felt that all patients deserved at least one chance of transplant. They also felt organs should be allocated preferentially to patients who had spent a longer time on the waiting list. Some were hesitant to state preferences or priority for particular groups of patients, contending that all transplant candidates were equally deserving of a transplant and that allocation should be based on medical urgency alone.
Donor organs are a scarce resource. Because of the extreme shortfall in donor organs, difficult decisions need to be made in determining who receives those scarce resources. The lack of transparency in the allocation criteria has fostered community skepticism regarding the fairness of the organ allocation process (36). However, there is growing recognition that a better understanding of community attitudes and preferences for these issues is required “to ensure that clinicians and policy makers are in step with community values” (36). However, as our findings demonstrate, there is a lack of research examining community preferences and a wide variability in the studies identified.
This study used systematic review methods that included a comprehensive search and screening of studies using predetermined inclusion and exclusion criteria. Study reporting was assessed according to explicit criteria. Qualitative data should be auditable, so that readers can assess how themes were derived and whether they reflect the findings of the primary studies (37). We identified descriptive themes and the relationship between themes. Some may contend that the findings become decontextualized after combining studies using different methods, theoretical frameworks, and conducted in different settings. However, we have provided comprehensive details about the research team characteristics, participants, setting, and methods, as reported by the authors of each primary study; and explicitly stated the source of each finding or respondent quotation. Also, we acknowledge that there may be potential difficulties in combining results of studies considering different organs, as it is reasonable to expect some variability in allocation priorities across organs. However, we believe that the main principles that individuals report should influence organ allocation can be grouped into general, nonorgan specific themes outlines in this article. For instance, although age, under the guise of “fair innings,” may be weighted differently for different organ types (and for other circumstances), we have found that its inclusion as a general principle is fairly robust given its appearance in a number of studies.
Further, our findings are based on empirical observation about community preferences for organ allocation and cannot alone be used to establish ethical conclusions for organ allocation. Questions regarding whether such preferences “ought” to be included can only be addressed in the policy arena. As indicated earlier, however, there is significant interest demonstrated among bodies such as UNOS for incorporating community preferences into their guidelines, and therefore, it seems reasonable to draw some policy relevance from the evidence we have reviewed in this article.
Organ allocation involves a complex decision-making process. There is still ongoing debate about how to maintain equity and achieve allocation outcomes that are acceptable to the medical community and wider society more generally (38). Our findings reflect some of the factors outlined in a recent discussion (39) of the principles for allocation of scarce medical interventions (including organs). The authors recommend “a complete lives system,” which combined the principles of prioritizing younger people, considering prognosis, saving the most lives, and “promoting and rewarding social usefulness” (39) into a framework that is consistent with the widely held values of prioritizing those worst off, maximizing benefits, and treating people equally (39). Organ allocation has been described as a “tragic choice” because of its intrinsic value conflict, between utility and justice, with no possibility of an absolute resolution (6, 40). As reflected in our findings, it is acknowledged that distributive justice in the context of organ allocation requires a balance of utility, efficiency, and equity (7, 8).
This work adds an important dimension to the current debate by providing a framework for understanding community preferences and principles for organ allocation. The framework presents a means of interpreting current empirical data on community preferences for organ allocation and can be used as a basis for initial discussion among policy makers and the community. Community members have opinions in prioritizing transplant candidates and can deliberate and make decisions about organ allocation. This study also demonstrates that the community has a fluid concept of what it deems to be just. This means that preferences may be contextualized and nuanced; the details of which may potentially be lost in the process of inferring generalizable principles necessary for operationalization, and they may feel uncertain as to how to interpret or apply the principles of efficiency and equity to indicate a preference for a given attribute. Following on from the Oregon experiment in the late 1980s (41), recent years have seen a growing movement internationally toward the use of community consultation in health policy making including major initiatives in Australia, United Kingdom, and Canada (42–44). Elsewhere, although there have been some attempts to explicitly use community preferences to develop healthcare policy through individual small-scale projects (45), the institutionalization of such inputs into the policy-making process has been generally limited.
Community consultation and involvement is likely to require a multistep approach. Educating community members can help to increase their confidence to make informed arguments and decisions. For example, the difference between maximizing absolute survival or benefit versus incremental survival or benefit may not be understood, and, therefore, not considered by the community. Rather than adopting a didactic approach, we recommend a facilitated program that allows community members to seek clarification, engage in discussion, express their views, and listen to the opinion of others, thereby enhancing their engagement in the policy debate. Community engagement in the development of allocation algorithms is imperative. The challenge still remains, although, as to how the diverse and mutually incompatible views of the community can be resolved. A consensus development approach in eliciting community preferences, such as the nominal group technique, may be used (46). This technique takes into account the different perspectives of the community and can be used to assess the distribution and weighting of participant responses. Alternatively, quantitative techniques, such as discrete choice analysis, which actually require participant variability, could also be used to estimate the relative weights or importance attached to particular factors.
To ensure meaningful involvement and engagement, the process of eliciting community preferences should be directly linked with policy development. Consequently, by engaging the community in the public policy debate around the issue of donor organ allocation, it gives members of the community a direct stake in achieving these policy outcomes. Importantly, this can also institutionalize a degree of community action, which potentially has flow on benefits to other areas of concern to policy makers.
An organ allocation policy is ultimately a means by which a scarce community resource is managed. When such a policy is designed solely by professionals without community consultation, it is, regardless of its merits, subject to the criticism that it is unjust on the grounds of procedural justice. Therefore, the continued exclusions of the community from this debate and from the design of organ allocation protocols cannot be justified, even irresponsible. A dialogue between the community and transplant professionals should be in set in motion, to work toward a balance that respects community values while maintaining continued clinical effectiveness. Effective methods for eliciting and incorporating community values into organ allocation policies are now needed.
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