Public preferences for the allocation of donor organs for transplantation: A discrete choice experiment

https://doi.org/10.1016/j.socscimed.2021.114360Get rights and content

Highlights

  • Good quality of life after transplantation and younger age were the most important attributes.

  • Lower chance for a further donor organ offer was the least important attribute.

  • Trade-offs between medical urgency and effectiveness were not observable in this study.

  • Our DCE study linked these preferences with principles of distributive justice.

  • Understanding of public preferences can help to increase the willingness to donate.

Abstract

This study aimed to assess public preferences for the allocation of donor organs in Germany with the focus on ethical principles of distributive justice. We performed a discrete choice experiment (DCE) using a self-completed online questionnaire. Based on a systematic review and focus group discussions, six attributes, each with two–four levels, were selected (corresponding principle of distributive justice in brackets), including (1) life years gained after transplantation (principle of distributive justice: effectiveness/benefit – utilitarianism), (2) quality of life after transplantation (effectiveness/benefit – utilitarianism), (3) chance for a further donor organ offer (principle of distributive justice: medical urgency – favouring the worst-off), (4) age (medical and social risk factors: sociodemographic status), (5) registered donor (principle of distributive justice: value for society), and (6) individual role in causing organ failure (principle of distributive justice: own fault). Each respondent was presented with eight choice sets and asked to choose between two hypothetical patients without an opt-out. Data were analysed using conditional logit, mixed logit and latent class models. The final sample comprised 1028 respondents. Choice decisions were significantly influenced by all attributes except chance for a further donor organ offer. The attributes of good quality of life after transplantation, younger age, and no individual role in causing organ failure had the greatest impact on choice decisions. Life years gained after transplantation and being a registered donor were less important for the public. The latent class model identified four classes with preference heterogeneities. Respondents preferred to allocate deceased donor organs by criteria related to effectiveness/benefit, whereas medical urgency was of minor importance. Therefore, a public propensity for a rational, utilitarian, ethical model of allocation could be identified. Public preferences can help to inform policy to warrant socially responsible allocation systems and thus improve organ donation rates.

Introduction

For patients with end-stage solid organ disease, transplantations are the treatment of choice to improve the chances of long-term survival and quality of life (Pinson et al., 2000; Tong et al., 2017). Transplantation medicine worldwide faces an increasing gap between the demand for suitable deceased donor organs and supply. The resulting major challenge is the decision-making process required for the allocation of these scarce resources, which includes the decision of who should be considered to receive an available organ (Gutmann and Land, 1997). This decision-making and priority-setting process is an expression of the ethical dilemma caused not only by donor organ scarcity but also by the life-and-death situation for donor organ recipients whose life expectancy depends on timely organ transplantation, forcing value judgements concerning wait-listed patients (Eurotransplant, 2019; Gutmann and Land, 1997).

Organ allocation procedures are based on different criteria, such as time on the waiting list, medical urgency, and probability of transplantation success (World Medical Association, 2019). However, the objectives of medical urgency and probability of success can conflict since success rates for transplantations typically decrease as urgency increases (Bobbert and Ganten, 2013). Overestimation of post-transplant success may lead to an unacceptable denial of patients with the highest urgency, and it may put patients who could also live without transplantation with an acceptable prognosis at unnecessary perioperative risk (Schrem et al., 2016).

In particular in Germany, since its beginning, the transplantation medicine is faced with the challenge of a huge mismatch in supply and demand. In the last decades, there were much less organs donated than needed for transplantation. According to the Organ Transplantation Act from 1997 (Act on organ and tissue donation) all organ allocation decisions have also to consider urgency and the probability of transplantation success. The elaboration of these allocation regulations is the responsibility of the medical expert associations resulting in guidelines, which balance these divergent criteria differently depending on the type of organ (German Medical Association). The implementation of the allocation of donor organs is the responsibility of Eurotransplant (ET), an international collaborative network of eight different European countries in Austria, Belgium, Croatia, Germany, Hungary, Luxembourg, the Netherlands and Slovenia. In the consequence, to date, Germany receives more donor organs from the ET region than they provide.

To date, there is an ongoing debate about the appropriate choice and relative weighting of allocation criteria and especially their impact on fairness and distributive justice (Axelrod and Pomfret, 2008; Childress, 2001; Hippen et al., 2011; Howard, 2001; Leichtman et al., 2011; Persad et al., 2009). A public consensus on priorities for organ allocation is of high relevance because deceased donor organs are a public resource, and thus, the supply of organs is dependent on public willingness to donate. Furthermore, public preferences can be used to inform policies to warrant socially responsible allocation systems (Johri and Ubel, 2003; Neuberger and Ubel, 2000; Oedingen et al., 2019, Oedingen et al., 2020).

The aim of this study is to assess public preferences for the allocation of donor organs in Germany. We performed a discrete choice experiment (DCE) to evaluate public preferences and the impact their attributes and levels have on choice decisions. This study is part of a wider project on preferences in organ allocation (Oedingen et al., 2018). The allocation criteria used were categorized into a theoretical framework of distributive justice principles that were systematically linked in a systematic review (Oedingen et al., 2019) and verified in focus group discussions (Oedingen et al., 2020) preceding this study.

Donor organs are allocated worldwide by institutions to recipients without expected return, such as costs or prices. Allocation procedures are expected to match ethical aspects of distributive justice. A successful allocation system must be fair, equitable, and broadly accepted by the public to encourage altruistic organ donation. The term 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’ (Lamont and Favor, 2017). 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, medical background and sociodemographic status may impact both effectiveness/benefit and medical urgency. Therefore, these two groups present medical and social risk factors influencing the allocation decision as shown in Table 1 (Oedingen et al., 2019, Oedingen et al., 2020).

Section snippets

Discrete choice experiment

A DCE is a stated-preference method eliciting (latent) preference structures and measuring utilities to gain information about preferences (Clark et al., 2014; de Bekker-Grob et al., 2012; Soekhai et al., 2019). The method is based on consumer choice theory (Lancaster, 1966), which assumes that (1) the utility of goods can be defined by different characteristics (i.e., attributes) and that (2) each attribute varies systematically with different specifications (i.e., levels). In a DCE, a good is

Sample characteristics

Overall, 1028 respondents were included in the final sample (response rate: 12.3%). The sample was generally representative of the adult German population on gender, age, education level, and region (see Appendix Supplementary data, Appendix Supplementary data in the Supplementary Materials). Respondents were distributed equally across the 13 versions of the DCE. As all respondents were presented with eight choice sets including two alternatives (patient A or patient B), overall 16,448 choice

Discussion

This DCE study has been applied to elicit public preferences in organ allocation underpinning principles of distributive justice. Our DCE showed that public preferences for organ allocation are significantly influenced by the selected attributes and levels. The results of the CL model indicated that a good quality of life is the most important attribute influencing the respondents’ choice decisions and is, therefore, of high relevance. The only attribute with no significant impact was a 50%

Conclusions and further implications

The allocation of deceased donor organs is a relevant societal task in which, in addition to medical professionals and transplant patients, the public must also be involved. It is necessary to analyse which preferences the public have regarding the complex decision-making process for organ allocation. This public preference study demonstrates that organ allocation procedures should prioritize achieving good quality of life after transplantation and younger recipients. Therefore, a rational,

Author contributions

Carina Oedingen: Conceptualisation, Methodology, Investigation, Resources, Data curation, Formal and statistical analysis, Writing – original draft. Tim Bartling: Conceptualisation, Methodology, Formal analysis, Writing – review & editing. Harald Schrem: Conceptualisation, Methodology, Formal analysis, Writing – review & editing. Axel C. Mühlbacher: Conceptualisation, Methodology, Formal analysis, Writing – review & editing. Christian Krauth: Conceptualisation, Methodology, Formal analysis,

Conflict of interest disclosures

Carina Oedingen and Tim Bartling were funded by the German Federal Ministry of Education and Research. The funding source had no role in the study and no influence on the data collection and analyses, interpretation of the results or writing of publications. Harald Schrem, Axel C. Mühlbacher and Christian Krauth have no conflicts of interest that are directly relevant to the content of this article.

Funding/support

This study was funded by the German Federal Ministry of Education and Research (grant number: 01EH1603B).

Acknowledgements

The authors would like to thank all the respondents who participated in the study and graciously offered their time.

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