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Introducing Incentives and Reducing Disincentives in Enhancing Deceased Organ Donation and Transplantation

Open AccessPublished:January 04, 2023DOI:https://doi.org/10.1016/j.semnephrol.2022.07.002
      Summary: Despite the effectiveness of solid organ transplantation, progress to close the gap between donor organs and demand remains slow. An organ shortage increases the waiting time for transplant and involves significant costs including patient morbidity and mortality. Against the background of a low deceased organ donation rate, this article discusses the option of introducing incentives and removing disincentives to deceased organ donation. Perspectives from ethics, general public opinion, and the health care profession are examined to ensure a comprehensive appraisal and illustrate different facets of opinion on this complex area. Special cultural and psychosocial considerations in Asia, including the family based consent model, are discussed.

      Keywords

      Patients with end-stage organ failure often die before the availability of solid organ transplantation, currently the best and most effective treatment. The number of people with end-stage renal disease receiving renal replacement therapy worldwide is projected to increase from 2.618 million in 2010 to 4.439 million by 2030.
      • Liyanage T
      • Ninomiya T
      • Jha V
      • et al.
      Worldwide access to treatment for end-stage kidney disease: a systematic review.
      Despite markedly improved survival after renal transplantation when compared with age-matched individuals remaining on the transplant waiting list,
      • Wolfe RA
      • Ashby VB
      • Milford EL
      • et al.
      Comparison of mortality in all patients on dialysis, patients on dialysis awaiting transplantation and recipients of a first cadaveric transplant.
      organ shortage results in increasingly long waiting times for patients on the kidney transplantation list. Such disparity between organ demand and organ availability applies to other organs, such as liver transplantation; the mortality rate of patients on the waiting list for liver transplantation exceeded 20% at 6 months as a result of organ shortage.
      • Husen P
      • Hornung J
      • Benko T
      • et al.
      Risk factors for high mortality on the liver transplant waiting list in times of organ shortage: a single-center analysis.
      Until recently, efforts in encouraging organ donation has been limited to education. In other words, altruistic donation is the underpinning principle. Understanding motivation and disincentives of organ donation in society, on the other hand, is of crucial importance to supplement altruistic motives. In this article, we discuss the pros and cons of introducing incentives and removing disincentives to increase organ donation. The goal is to provide the greatest benefit to transplant recipients and society. In particular, we limit the discussion to deceased organ donation; incentives and disincentives in living organ donation have been appraised previously elsewhere.
      • Allen MB
      • Reese PP.
      Financial incentives for living kidney donation: ethics and evidence.
      ,
      • McCormick F
      • Held PJ
      • Chertow GM
      • Peters TG
      • Roberts JP.
      Removing disincentives to kidney donation: a quantitative analysis.
      We aim to assess introducing incentives and removing disincentives to deceased organ donation from the perspectives of different stakeholders and to identify ethical and societal considerations. To ensure comprehensive and cautious consideration, we provide an appraisal from different angles, aiming to address the topic from an international summit on ethical principles, organ donors’ families, economists, organ transplant teams, and society. To address the organ shortage in Asia as well as the efforts to reduce organ trafficking, we add a more granular discussion on the cultural and psychosocial consideration in Asia.

      PERSPECTIVES OF POTENTIAL ORGAN DONORS’ FAMILIES

      To date, almost all countries do not allow health care professionals to overrule family members’ objections to donation after a patient's death, sometimes even after the patient had registered their intention to donate.
      • Shaw D
      • Georgieva D
      • Haase B
      • et al.
      Family over rules? An ethical analysis of allowing families to overrule donation intentions.
      Making a decision to permit organ donation after the circulatory or brain death of beloved family members is perhaps one of the most difficult ones during the bereavement stages. Given the psychological stress and distress, consent to donate organs for the sake of genetically and emotionally unrelated recipients is challenging.
      In an ideal or utopian world, altruistic deceased organ donation is a generous act of solidarity to unrelated recipients and society. In other words, it should have been a charitable and unidirectional gift. Nevertheless, there has been emerging evidence to suggest that a family's decision to donate is influenced by complex and dynamic constructs.
      • López JS
      • Soria-Oliver M
      • Aramayona B
      • García-Sánchez R
      • Martínez JM
      • Martín MJ.
      An integrated psychosocial model of relatives' decision about deceased organ donation (IMROD): joining pieces of the puzzle.
      Willingness to donate an organ is not as simple as giving away a gift coupon. The family, in brief, is expected to struggle in grief reaction and to cope with a complex decision-making process in a difficult lifetime situation. They have to be guided on the emotional reaction and yet rational cognitive process of organ donation consent. The family might factor in the benefit of honoring the dying wish of a deceased relative, and their own attitudes toward organ donation. Cultural values, religious beliefs, circumstances of death, satisfaction with medical care, and many interacting constructs influence the family decision. Particularly worth mentioning is the principle of reciprocity, which applies in the complex human decision of organ donation. Even though one might like to conceive it as a voluntary and pure altruistic act without motives, society should view organ donation as a traumatic decision with inherent incentives and disincentives. With this perspective, we are more likely to fully understand the decision rules by the grieving families.
      If we apply the utility theory and decision theory on the donor's or the donor's family's decision making, we should consider the distance of relationship between the donor and recipient. This is an important variable in the equation. In the scenario of organ donation to a close family member, the influence of risk or incentives is much lower. On the contrary, the significance of incentives and disincentives becomes more relevant in nondirected organ donation. Even if organ donation is supposed to help another individual, there is considerable social distance between the deceased donor and recipient—and that between the donor's family and recipient. The donor's family, by law, is prohibited from learning the recipients’ identities and vice versa. To draw an analogy to obstacles in coronavirus disease-2019 vaccine uptake, economists suggest a role for government intervention in the face of externalities. The externality refers to the effects of individuals’ actions on other people, and such effects might be undervalued when we do not personally know the people we are protecting.
      • Volpp KG
      • Cannuscio CC.
      Incentives for immunity – strategies for increasing Covid-19 vaccine uptake.
      Although benefits of herd immunity from vaccination (and that of benefiting society from organ donation) is clearly recognized, government provision of incentives has been considered a reasonable approach.
      • Volpp KG
      • Cannuscio CC.
      Incentives for immunity – strategies for increasing Covid-19 vaccine uptake.
      Previous research confirmed a significant role of in-group altruism favoring an individual's willingness to donate organs to members within their group instead of outsiders.
      • Hyde MK
      • White KM.
      Exploring donation decisions: beliefs and preferences for organ donation in Australia.
      Besides self-identity, moral norm is also in a much lower position in deceased organ donation than the situation of living organ donation. People tend to have a moral obligation to donate to members of their in-group or close relatives; the contribution of moral norm is much less evident in deceased organ donation.
      • Hyde MK
      • Knowles SR
      • White KM.
      Donating blood and organs: using an extended theory of planned behavior perspective to identify similarities and differences in individual motivations to donate.
      In short, a donor's family might not necessarily be motivated to give consent for the donation. Because intrinsic motivation such as being purely altruistic or charitable might not suffice, the final decision is most likely to be modified by extrinsic motivation and appreciation from society.
      If not the reason why donors and donors’ families consent to organ donation, the reward and appreciation for such an honorable action remains a motive and extra motivating force behind it. A donor medal of honor, a letter, or addition of the donor's name to a memorial, represent the most common and least controversial token of appreciation.
      • Delmonico FL
      • Arnold R
      • Scheper-Hughes N
      • Siminoff LA
      • Kahn J
      • Youngner SJ
      Ethical incentives – not payment – for organ donation.
      The magnitude of the effects from these extrinsic motivations are difficult to quantify, and should be evaluated further. Qualitative research on personal, cultural, and systemic factors that influence the donation decision, based on a face-to-face focus group pilot study followed by a quantitative choice-based method (namely, discrete choice experiment using scenarios), has supported the preference for reimbursement of funeral expenses. A previous survey of 2005 respondents, representative of the Australian adult population, suggested that more than 80% of respondents viewed a positive impact of partial reimbursement of funeral expenses, as well as favoring nonmonetary incentives.
      • Howard K
      • Jan S
      • Rose JM
      • et al.
      Preferences for policy options for deceased organ donation for transplantation: a discrete choice experiment.

      PERSPECTIVES OF THE DECLARATION OF ISTANBUL CUSTODIAN GROUP

      Any provision of compensation and in particular financial incentives to families of deceased organ donors should be subject to close scrutiny, and regularly reviewed. In the United States, the National Organ Transplant Act explicitly made it illegal to “knowingly acquire, receive, or otherwise transfer any human organ for valuable consideration in human transplantation.”
      United States
      National Organ Transplant Act: Public Law 98-507.
      Internationally, the World Health Assembly and the Declaration of Istanbul Custodian Group, in alignment with the World Health Organization Guiding Principles and the Council of Europe Convention Against Trafficking in Human Organs, have made statements on the ethical principle in payment for deceased organ donor families.
      • Capron AM
      • Delmonico FL
      • Dominguez-Gil B
      • Martin DM
      • Danovitch GM
      • Chapman J.
      Statement of the declaration of Istanbul Custodian Group regarding payments to families of deceased organ donors.
      Most importantly, the Declaration upheld the principle that “providing money to people to encourage them to consent to organ removal or reward them by doing so weakens organ donation programs by treating human body as a commodity used for financial gain, exploits the economic vulnerability of living donors and deceased donor families, and undermines equality and justice by reinforcing rather than reducing socioeconomic inequities.”
      • Capron AM
      • Delmonico FL
      • Dominguez-Gil B
      • Martin DM
      • Danovitch GM
      • Chapman J.
      Statement of the declaration of Istanbul Custodian Group regarding payments to families of deceased organ donors.
      Arguments were raised by the Declaration to prohibit offering financial payments to the next of kin in the context of deceased organ donation. One of the concerns is undermining trust in death determinations when the next of kin also has played a role around the time of brain death and circulatory death, including the decision to withdraw medical intervention. Such worries prompted the Declaration to flag the concerns about a conflict of interest. Other considerations include the adverse effect on the living donation rate and undermining public support of transplant programs. The third argument against permitting payment to donor families is potential disputes among donor relatives (over the manner in which the money is being distributed). In addition, there is opposition to a direct payment commercializing a purely altruistic praiseworthy act of gift giving.
      • Capron AM
      • Delmonico FL
      • Dominguez-Gil B
      • Martin DM
      • Danovitch GM
      • Chapman J.
      Statement of the declaration of Istanbul Custodian Group regarding payments to families of deceased organ donors.
      ,
      • Arnold R
      • Bartlett S
      • Bernat J
      • et al.
      Financial incentives for cadaver organ donation: an ethical reappraisal.

      PERSPECTIVES OF ORGAN TRANSPLANT FROM HEALTH CARE WORKERS

      Despite criticism of monetary payment to deceased organ donor families by the Declaration of Istanbul, other ethics panel and transplant team doctors have proposed reimbursement for funeral expenses for deceased donors. This is viewed as a gift to convey gratitude from society, emphasizing the intention to express appreciation for the donation, and not to provide payment for donation.
      Covering funeral expenses is to strike the balance of providing incentives and avoiding direct cash payments. Whether a government-regulated reimbursement is ethically permissible depends a lot on the purpose of the program. After determination of death and organ donation, a third-party payment for the funeral expenses has been considered an acceptable incentive to increase donation rates.
      • Arnold R
      • Bartlett S
      • Bernat J
      • et al.
      Financial incentives for cadaver organ donation: an ethical reappraisal.
      At best, the benefit to the donor family consenting to organ donation is perceived as an expression of gratitude on behalf of society for the gift. A pertinent question, therefore, is to examine who is paying for the funeral. When the gift is focused (on the funeral) rather than an open-ended financial gift, and is paid by society (instead of payment by the recipient), it becomes more of a gift and not a market-based incentive. Examples of financial payment from the government (for the burden related to donation and considered acceptable by the Declaration of Istanbul) include Spain, Croatia, and Korea. To quote an example in Korea, the Organ Transplant Act was enacted in 2000 to legalize organ transplantation from brain-dead donors, followed by introducing an incentive to bereaved families in 2006. Although it might not be the only reason accounting for the national increase in the number of deceased donors from 3.42 per million population (pmp) in 1999 to 8.03 per million population (pmp) in 2011, government efforts have been promising in fulfilling “national self-sufficiency” and therefore minimizing transplant tourism.
      • Min SI
      • Ahn C
      • Han DJ
      • et al.
      To achieve national self-sufficiency: recent progresses in deceased donation in Korea.
      Currently, Korean law allows the government to pay a funeral fee to the next of kin of the deceased donor. The reasons behind such a decision is two-fold: to promote deceased organ donation and to include Korean cultural values or Confucius teaching of appreciating a heroic act and mutual help. In other words, the reimbursement of the funeral expenditure is a gift and not a trade. Finally, it should be mentioned that most Asian guests at a funeral ceremony give the bereaved family condolence money, as a courtesy and a means to reduce the financial burden of a funeral. From an anthropologic perspective, it is important to consider cultural pluralism among increasingly diverse societies when the ethics of funeral expenditure reimbursement after deceased organ donation is considered. An analogy can be drawn to the body donation program for medical education and dissection purpose, in which many countries’ universities hold funeral ceremonies for the deceased. There are no guidelines in Korea to stipulate the exact ceremonies, but the overarching principle is a theme of gratitude and salutation according to the bereaved family's beliefs and religious background.
      • Park JT
      • Jang Y
      • Park MS
      • et al.
      The trend of body donation for education based on Korean social and religious culture.
      When considering paying for a funeral in Asia, with Chinese and Korean cultures in mind, it is important to emphasize the complexity of the funeral rituals and ceremonies, which serve an important role to ensure safe passage of the deceased into the afterlife.
      • Martinson IM
      Funeral rituals in Taiwan and Korea.
      ,
      • Lobar SL
      • Youngblut JM
      • Brooten D.
      Cross-cultural beliefs, ceremonies, and rituals surrounding death of a loved one.
      Health care professionals therefore should have increased sensitivity to the underlying cultural contexts.
      The suggestion to provide limited donor family compensation also has been raised and discussed in Western countries. The Council and Ethics Committee of the American Society of Transplant Surgeons (ASTS) previously conducted a web-based survey in 2008
      • Rodrigue JR
      • Crist K
      • Roberts JP
      • Freeman Jr, RB
      • Merion RM
      • Reed AI.
      Stimulus for organ donation: a survey of the American Society of Transplant Surgeons membership.
      to collect views of its members on financial incentives for deceased organ donation. The 449 survey respondents were mostly surgeons who practiced in the United States. A key finding of the study showed strong support within the ASTS membership to permit implementation of government-regulated strategies using indirect financial incentives to improve deceased donation rates. Instead of direct incentives such as a cash payment to the family of the deceased donor, the respondents favored indirect means such as reimbursement of funeral expenses. The proportion of respondents who supported reimbursing funeral expenses was 73.0%.
      • Rodrigue JR
      • Crist K
      • Roberts JP
      • Freeman Jr, RB
      • Merion RM
      • Reed AI.
      Stimulus for organ donation: a survey of the American Society of Transplant Surgeons membership.
      The ASTS finding concurs with another poll from members of the International Society for Heart and Lung Transplantation and the Foundation for the Advancement of Cardiac Therapies in 2002. Of the 739 respondents, more than half were doctor members of the transplant society, and 70% of the members supported indirect compensation such as payment of funeral expenses and a donation to a charity of the family's choice.
      • Oz MC
      • Kherani AR
      • Rowe A
      • et al.
      How to improve organ donation: results of the ISHLT/FACT poll.
      A more recent web-based survey of attitude toward financial incentives to increase organ donation was performed in Canada in 2011.
      • Barnieh L
      • Klarenbach S
      • Gill JS
      • Caulfield T
      • Manns B.
      Attitudes toward strategies to increase organ donation: views of the general public and health professionals.
      In the context of assessing health care professional groups’ attitudes, sampling was achieved by questionnaire distribution to the members of the Canadian Society of Transplantation, Canadian Society of Nephrology, Canadian Association of Nephrology Nurses and Technologists, and Canadian Critical Care Society. Approximately 62% of health professionals supported one or more types of financial incentives to increase deceased donation, and the most favored means was through reimbursing funeral expenses.
      • Barnieh L
      • Klarenbach S
      • Gill JS
      • Caulfield T
      • Manns B.
      Attitudes toward strategies to increase organ donation: views of the general public and health professionals.

      PERSPECTIVES OF ACADEMIA AND BIOETHICISTS

      After suggestion by Economics Nobel Laureate Alvin Roth for the community to unite to remove disincentives to kidney donation, the transplant community and academia have been having more discussion and analysis. That, in part, hinges on the estimates of the economic welfare gain for the society as a whole.
      • McCormick F
      • Held PJ
      • Chertow GM
      • Peters TG
      • Roberts JP.
      Removing disincentives to kidney donation: a quantitative analysis.
      The ultimate objective of the analysis requires an assessment of the disincentives facing the families of deceased donors. To be fair to all stakeholders, society should understand the disincentives for donor families. In countries where government covers the medical expenses associated with organ donation, the biggest disincentive is psychological or emotional. Being widowed or separated is traumatic enough. Added to this is the decision of organ donation during emotional turmoil. Allowing the organs of a beloved family member to be removed could be the second hit in many cultures.
      • McCormick F
      • Held PJ
      • Chertow GM
      • Peters TG
      • Roberts JP.
      Removing disincentives to kidney donation: a quantitative analysis.
      When people are emotionally distressed, as shown by psychologists, there is a tendency for them to choose a default option.
      • Anderson CJ.
      The psychology of doing nothing: forms of decision avoidance result from reason and emotion.
      ,
      • Breslin J.
      The status quo bias and decisions to withdraw life-sustaining treatment.
      That means the family decision to consent to organ donation may be influenced by the status quo bias.
      Psychological barriers and costs, on the other hand, are difficult to quantify and measure. To investigate the impact of reducing disincentives on the deceased organ donation rate, an experimental economics laboratory has been used previously to test the hypothesis.
      • Hawley Z
      • Li D
      • Schnier K
      • Turgeon N.
      Can we increase organ donation by reducing the disincentives? An experimental analysis.
      A detailed analysis at the Georgia State University Experimental Economics Center provided rigorous support that cutting the costs in half of being an organ donor does not increase donation rates, but complete elimination of the costs increases the rate of deceased organ donation.
      • Hawley Z
      • Li D
      • Schnier K
      • Turgeon N.
      Can we increase organ donation by reducing the disincentives? An experimental analysis.
      To date, two international bodies have considered the option of introducing incentives and removing disincentives to increase deceased organ donation.
      The American Society of Transplantation and the ASTS had convened a workshop to explore the option of removing disincentives and testing incentives to increase deceased organ donation in 2014.
      • Levy MJ.
      State incentives to promote organ donation: honoring the principles of reciprocity and solidarity inherent in the gift relationship.
      The Incentives Workshop Group consisted of leaders from the two societies, experts in economics, ethics, and laws. A key point from the workshop was that deceased donation represents a practice in which the families are not benefiting directly from the increased health and productivity of the organ recipients that is clearly gained by their “gift.” On the other hand, the spirit of altruism at the core is not disputed. Proposals recognized by the Incentives Workshop Group, in lieu of simple cash payment, included payment of certain hospital costs and funeral costs under the heading of removing disincentives.
      • Levy MJ.
      State incentives to promote organ donation: honoring the principles of reciprocity and solidarity inherent in the gift relationship.
      The Nuffield Council on Bioethics, a UK independent body advising policy makers internationally, also accepts funeral coverage as an indirect financial incentive for deceased organ donation and that it “appears to be regarded by both professionals and families as appropriate acknowledgement of the person's gift.”
      • Voo TC.
      Altruism and reward: motivational compatibility in deceased organ donation.
      ,
      • London
      As part of its 2011 report Human Bodies: Donation for Medicine and Research,
      • London
      the Council stated a few principles to guide decisions about body donation. Similar to the American Society of Transplantation and the ASTS, the Nuffield Council considered altruism to be central to organ donation. In addition, the decisions about deceased organ donation should be based on the wishes of the deceased, insofar as they are known. Distinctions were drawn between altruistic-focused interventions that remove disincentives, and nonaltruistic interventions that are intended to be sufficient in themselves to prompt donation. In terms of incentives for donation, the Nuffield Council described this under an ethical framework using an “Intervention Ladder” as a tool (Table 1).
      • London
      Regarding the option of reimbursing funeral expenses, the Council placed this at rung four of the ladder. That means the payment should be perceived as an extra prompt to those who already are inclined to donate, but never an actual incentive; people or families with strong objections would be unlikely to be swayed. An important implication from this recommendation of the Council is that such an offer (to reimburse funeral costs) was not to be made to relatives considering whether to donate, but as an incentive for people to sign up for the organ donation registry.
      • London
      Ethical Framework of Promoting Organ Donation: Intervention Ladder
      Tabled 1
      Nonaltruistic focusRung 6: Financial incentives that leave the donor in a better financial position as a result of donating

      Rung 5: Interventions offering associated benefits in kind to encourage those who would not otherwise have contemplated donating to consider doing so
      Altruist focusRung 4: Interventions as an extra prompt or encouragement for those already disposed to donate for altruistic reasons

      Rung 3: Interventions to remove barriers and disincentives to donation experienced by those disposed to donate

      Rung 2: Recognition of, and gratitude for, altruistic donation, through whatever methods are appropriate both to the form of donation and the donor concerned

      Rung 1: Information about the need for the donation of bodily material for others’ treatment or for medical research
      Reprinted with permission from Nuffield Council on Bioethics.
      • London

      PERSPECTIVES OF THE GENERAL PUBLIC

      When considering the pros and cons of introducing incentives and removing disincentives for deceased organ donation, we must examine the acceptance from the general public. After all, the awareness and willingness of the general public to register as donors is the key step for promoting organ donation.
      To assess the acceptability and attitude of the public or potential donors, it would be relevant to survey and consult them. In other words, we need to understand how the general public reacts to the system? If it is positive, we expect more people to sign up and support deceased organ donation. On the contrary, if the system is perceived as morally inappropriate or unfair, we need to caution about backfire.
      The previously mentioned 2011 Canadian survey had a longer version of the questionnaire given to members of the public, in addition to the abbreviated version given to health professionals.
      • Barnieh L
      • Klarenbach S
      • Gill JS
      • Caulfield T
      • Manns B.
      Attitudes toward strategies to increase organ donation: views of the general public and health professionals.
      Responses were available from 2004 general public members: approximately 71% of them supported one or more financial incentives to increase deceased organ donation. On the other hand, 16% of the general public found none of the proposed strategies (such as reimbursing funeral expenses and provision of a tax break) were acceptable.
      • Barnieh L
      • Klarenbach S
      • Gill JS
      • Caulfield T
      • Manns B.
      Attitudes toward strategies to increase organ donation: views of the general public and health professionals.
      A quantitative survey in Germany in 2008 and 2009 was conducted among 755 students of medicine and economics to assess their attitudes toward financial incentives for deceased organ donation. Approximately 37.7% of students of economics and 37.8% of students of medicine considered it appropriate to cover the deceased donor's funeral expenses; one fifth of them were undecided.
      • Inthorn J
      • Wöhlke S
      • Schmidt F
      • Schicktanz S.
      Impact of gender and professional education on attitudes towards financial incentives for organ donation: results of a survey among 755 students of medicine and economics in Germany.
      Another telephone questionnaire survey with 845 respondents in the United States was performed to assess the acceptability of incentives for deceased donation between 2004 and 2005.
      • Boulware LE
      • Troll MU
      • Wang NY
      • Powe NR
      Public attitudes toward incentives for organ donation: a national study of different racial/ethnic and income groups.
      Contrary to the finding in Canada, fewer than one in five persons in the United States reported that they believe donors’ families should be compensated after donation. In terms of compensation, the most favored options were reimbursement of the deceased donor's medical expenses, a certificate of recognition for the donors’ family members, greater priority on the waiting list for deceased donors’ family members in case they should need an organ transplant in the future, and cash donations to the deceased donors’ charity of choice. When considering incentives for deceased donors, there was a difference in opinion with reference to racial or ethnic groups. African Americans and Hispanic participants were statistically significantly more likely than whites to be in favor of reimbursement for deceased donors’ funeral expenses.
      • Boulware LE
      • Troll MU
      • Wang NY
      • Powe NR
      Public attitudes toward incentives for organ donation: a national study of different racial/ethnic and income groups.
      Less than 1% of the sampled participants in the US study were Asians. Published data among the Asia-Pacific population would be relevant because the opinion would vary from country to country. Based on a questionnaire survey in Beijing in 2012 involving 2930 responses, 85.7% of Chinese supported that family members of deceased donors should receive financial compensation including payment of hospital charges and funeral costs of the donor.
      • Wang W
      • Tian H
      • Yin H
      • Liu H
      • Zhang XD.
      Attitudes toward organ donation in China.
      As mentioned previously, an online survey was performed in 2005, involving 2153 Australian community respondents.
      • Howard K
      • Jan S
      • Rose JM
      • et al.
      Preferences for policy options for deceased organ donation for transplantation: a discrete choice experiment.
      Overall, respondents favored a direct payment or funeral expense reimbursement. However, there was substantial heterogeneity across respondents. A latent class analysis cautioned that partial reimbursement of funeral expenses, for instance, could have a negative impact on 16.2% of the respondents and a significantly positive impact on 47.5% of them.
      • Howard K
      • Jan S
      • Rose JM
      • et al.
      Preferences for policy options for deceased organ donation for transplantation: a discrete choice experiment.
      As a whole, public opinion for financial incentives to promote deceased donation is more heterogeneous and divergent in comparison with living donation. A literature review noted that support for the coverage of funeral expenses ranged from 9% to 81% among 23 studies conducted in 17 different countries.
      • Hoeyer K
      • Schicktanz S
      • Deleuran I.
      Public attitudes to financial incentive model for organs: a literature review suggests that it is time to shift the focus from ‘financial incentives’ to ‘reciprocity.’.
      With the difference in study methodologies in mind, it is unclear if a good comparison or conclusion can be drawn. However, it is important to note the need to understand and explore how the public perceives the deceased donation system. It is conceivably a sensitive issue when we consider the theoretical concerns of “crowding out.” According to the motivation crowding theory, provision of extrinsic incentives sometimes can compromise or undermine intrinsic motivation for performing a certain behavior.
      • Gill JS
      • Klarenbach S
      • Barnieh L
      • et al.
      Financial incentives to increase Canadian organ donation: quick fix or fallacy?.
      ,
      • Barasch A
      • Berman JZ
      • Small DA.
      When payment undermines the pitch.
      To minimize the undesirable effect of crowding out intrinsic motivation by extrinsic motivation or incentives, some people have recommended allowing opting out of the offered incentives; the mechanism of declining the reciprocal gift therefore might have increased the self-signal value of organ donation.
      • Chao M.
      Demotivating incentives and motivation crowding out in charitable giving.
      To harness the willingness and altruistic motivation of the public or potential organ donors, most advocates for organ donation promotion should be confined to rung one to four of the Intervention Ladder proposed by the Nuffield Council on Bioethics (Table 1). This is based on the concept that providing incentives or removing disincentives would not have much impact on the net motivation to sign up for the donor registry for donors with low intrinsic motivation.
      • Chao M.
      Demotivating incentives and motivation crowding out in charitable giving.
      Desirable interventions, in other words, are mostly for donors with high intrinsic motives. The promotion of public knowledge about the anxiety and concerns of our long wait-listed organ failure patients together with their morbidity and imminent mortality should help further to promote the altruistic thoughts and acts of the public in their donation motives.
      • Li PK
      • Chu KH
      • Chow KM
      • et al.
      Cross sectional survey on the concerns and anxiety of patients waiting for organ transplants.
      However, the positive impact of reducing disincentives such as supporting funeral expenses cannot be understated.

      PERSPECTIVES OF ASIAN SOCIETY

      It is widely recognized that deceased organ donation rates in Asian countries have been significantly lower than that in Western countries.
      • Lo CM.
      Deceased donation in Asia: challenges and opportunities.
      ,
      • Woo KT.
      Social and cultural aspects of organ donation in Asia.
      With the grim statistics and emerging concern from the threat of organ trafficking as a result of the organ shortage, we focus on the concerns of incentives and disincentives in deceased organ donation in Asia.
      No one disputes the social and cultural beliefs in the decision to donate organs. As such, we further elaborate the psychological influence of Asians. In particular, we propose a significant effect of reciprocity,
      • Levy MJ.
      State incentives to promote organ donation: honoring the principles of reciprocity and solidarity inherent in the gift relationship.
      inherent in the Asian perception of organ donation and their willingness to donate or consent for family members to donate. In essence, reciprocity refers to the notion of “one party tends to repay the good (or sometimes bad) deeds of another party.”
      • Silk JB.
      Reciprocal altruism.
      Evolutionary studies have proposed reciprocal altruism to be part of the human trait when group and brain size increased with more social interaction.
      • Trivers R.
      The evolution of reciprocal altruism.
      Although reciprocal altruism has been shown to be an effective priming message in boosting organ donor registration in a randomized control trial setting in the United Kingdom,
      • O'Carroll RE
      • Quigley J
      • Miller CB.
      The effect of reciprocity priming on organ donor registration intentions and behavior.
      it should be explored further.
      An example of honoring the principles of reciprocity in incentivizing organ donor registrations is the organ allocation priority policy. Israel became the first country in 2008 to enact legislation incorporating such incentives based on individuals’ willingness to donate into their organ procurement system.
      • Levy MJ.
      State incentives to promote organ donation: honoring the principles of reciprocity and solidarity inherent in the gift relationship.
      ,
      • Lavee J
      • Ashkenazi T
      • Gurman G
      • Steinberg D.
      A new law for allocation of donor organs in Israel.
      ,
      • Stoler A
      • Kessler JB
      • Ashkenazi T
      • Roth AE
      • Lavee J.
      Incentivizing organ donor registrations with organ allocation priority.
      The policy provides an incentive or motivation by the reciprocal altruistic dictum that “each partner helping the other while he helps himself,”
      • Lavee J
      • Ashkenazi T
      • Gurman G
      • Steinberg D.
      A new law for allocation of donor organs in Israel.
      granting priority on organ donor waiting lists to those individuals who registered as organ donors by signing a donor card for at least 3 years. Subsequent observations in Israel, as analyzed 5 years after introduction of the new policy, included an increase in the authorization rate of next of kin of unregistered donors, as well as a two-fold higher likelihood of next-of-kin authorization for donation when the deceased relative was a registered donor.
      • Stoler A
      • Kessler JB
      • Ashkenazi T
      • Roth AE
      • Lavee J.
      Incentivizing authorization for deceased organ donation with organ allocation priority: the first 5 years.
      How does the concept of reciprocity apply for Asian societies? Will the results from Israel be replicated in Asia? Although social exchange theory should be a universal normal applicable to all human relationships, cultural influence or patterns might differ. Previous research on reciprocity across different cultural contexts, indeed, has shown that East Asians tend to reciprocate in kind and emphasize more on equity-based theory than Americans.
      • Deng Y
      • Wang CS
      • Aime F
      • Wang L
      • Sivanathan N
      • Kim YC
      Culture and patterns of reciprocity: the role of exchange type, regulatory focus, and emotions.
      Viewed through such a lens of “to give is to take,” it is relevant to quote another similar example in Taiwan, where incentives were provided to deceased organ donors’ families. In brief, after a person has become a deceased organ donor in Taiwan, up to three of his or her blood relatives will be granted priority to receive a deceased donor organ should they be on the waiting list for transplantation.
      • Lee PC
      • Chiang YJ
      • ST Chen
      Deceased donor kidney transplantation in Taiwan in 2015.
      At the heart of the issue is the family based consent that is unique and vital, albeit not exclusive, in Confucian tradition within Chinese societies. It is important to note that organ donation is more often a family based consent process in Chinese culture than those “from a Western cultures”. As such, family priority right provided in the Israel or Chinese model would be more likely to motivate organ donation within a family based ethical culture.
      • Fan R
      • Wang M.
      Family-based consent and motivation for cadaveric organ donation in China: an ethical exploration.
      As in any discussion of culture's influence on organ donation decision, we must be mindful that East Asians tend to favor family centered decision making. As opposed to the patient autonomy model inherent in most Western countries, ethnic groups from Asia are much more likely to disclose a diagnosis of terminal cancer and make the decision of life-supporting therapy together with family members.
      • Blackhall LJ
      • Murphy ST
      • Frank G
      • Michel V
      • Azen S.
      Ethnicity and attitudes toward patient autonomy.
      The same applies to the preference of family centered decision making for Chinese versus Americans in the event of mental health illness.
      • Corrigan PW
      • Lee EJ.
      Family-centered decision making for East Asian adults with mental illness.
      To follow the vein, arguments have been raised to recommend a family based consent model for organ donation in countries with strong Confucianism influence, as opposed to first-person consent or an opt-out model.
      • Wang J.
      The gift-of-life and family authority: a family-based consent approach to organ donation and procurement in China.
      As discussed by experts from a previous meeting of the European Society for Organ Transplantation–Ethical Legal and Psychosocial Aspects of Transplantation, there is no optimal level of participation of the family in the decision-making process of organ procurement.
      • Delgado J
      • Molina-Pérez A
      • Shaw D
      • Rodríguez-Arias D.
      The role of the family in deceased organ procurement: a guide for clinicians and policymakers.
      There is certain logic to address the family's concern and offset the donation disincentive, but we still should acknowledge the vital role of an individual signing consent for donation after death. Under the ethnic and cultural influence in Asia, we expect a high level of the family's role and decision making, and more so with a low percentage of the opt-out or presumed consent system in Asia, during organ donation or procurement. To factor in the repercussion of higher family involvement in Asia, the concept of incentives and disincentives might have to be conceptualized under the framework of the donor's family as a unit. For example, the incentive of covering the funeral expense or family priority right (to receive a deceased donor organ in case of organ failure in future) would be expected to activate a stronger effect of reciprocity in Asia.
      • Fan R
      • Wang M.
      Family-based consent and motivation for cadaveric organ donation in China: an ethical exploration.
      ,
      • Windzio M.
      The “social brain,” reciprocity, and social network segregation along ethnic boundaries.
      Other proposed means of providing incentives to the donor's family as a whole include a tuition voucher for the bereaved family, contribution to a charity specified by the donor's family, a donor medal of honor with appreciation to the families of deceased donors, tax credit, or tax refund.
      • Delmonico FL
      • Arnold R
      • Scheper-Hughes N
      • Siminoff LA
      • Kahn J
      • Youngner SJ
      Ethical incentives – not payment – for organ donation.
      ,
      • Naghavi N
      • Mubark MS
      • Rasiah R
      • Nia HS.
      Prioritizing factors affecting deceased organ donation in Malaysia: is a new organ donation system required?.
      An additional example of a family oriented priority donation as an incentive clause in Asia is the Japanese prioritization policy, which allows individuals to prioritize family members to receive their donated organs after death.
      • Aita K.
      New organ transplant policies in Japan, including the family-oriented priority donation clause.

      FEASIBILITY AND PRINCIPLES FOR IMPLEMENTATION

      With recognition of perspectives from different stakeholders and cultural differences, there are good reasons to consider regulated payment in the format of introducing incentives and removing disincentives to promote deceased organ donation. The range of incentives is summarized in Table 2. By and large, the most accepted means is an indirect payment such as a funeral expense reimbursement. Instead of a direct cash payment to the donor families, the financial support should be paid directly to the funeral home under a regulatory framework.
      Incentives for Deceased Organ Donation: Proposed Formats
      Tabled 1
      Nonfinancial

      Commemorative medals of honor

      Donor's recognition in a memorial and ceremony

      Scholarship or charitable fund named to recognize the deceased donor

      Priority to organ waiting for individual registered as an organ donor and/or priority of transplant listing to blood relatives of deceased organ donors
      Financial

      (monetary value but not direct payment to families)
      Covering or reimbursing funeral expenditure

      Contribution to a charity designated by the deceased or next of kin

      Reimbursement of travel and lodging expenses incurred by the family in conjunction with the donor's death or waiving medical expenditure in conjunction with the donor's death

      Tax reduction for registration as an organ donor and donating organs
      We emphasize that the policy should not interfere with the spirit of altruism, which is the core of deceased organ donation. However, it also is important to recognize the contribution of deceased organ donors to society. Ultimately, the concepts of contribution to society and altruism are not contradictory. An intuitive step, therefore, would be to lay the groundwork to introduce incentives and remove disincentives, epitomizing the reciprocal gift relationship. The obligation falls on the government to recognize the contribution of deceased organ donors to society. Of equal, and perhaps even greater, importance will be an upstream intervention at motivating the so-called passive-positive organ donors
      • Teoh JY
      • Lau BS
      • Far NY
      • et al.
      Attitudes, acceptance, and registration in relation to organ donation in Hong Kong: a cross-sectional study.
      • Siegel JT
      • Alvaro EM
      • Crano WD
      • Gonzalez AV
      • Tang JC
      • Jones SP.
      Passive-positive organ donor registration behavior: a mixed method assessment of the IIFF model.
      • Chow KM
      • Lui SF.
      Passive-positive organ donor registration behaviour.
      who have beliefs that favor organ donation but need additional motivations to convert their beliefs into action. Of the public who are willing to donate organs after death, up to 65.8% were passive and have not signed up for the donor registry in a recent survey in Hong Kong.
      • Teoh JY
      • Lau BS
      • Far NY
      • et al.
      Attitudes, acceptance, and registration in relation to organ donation in Hong Kong: a cross-sectional study.
      A regulated incentive system to increase the donation rate will be of most relevance for these passive-positive organ donors.
      If the concept of reimbursing funeral expenses for deceased organ donors is explored further then these four tenets are suggested as a guide: Tenet 1: the overarching principle is to appreciate and recognize the altruistic behavior of organ donors, and not the next of kin. Tenet 2: the second priority of reimbursing funeral expenses is to motivate the passive-positive public to sign up for organ donation. Tenet 3: the ultimate beneficiary from an incentive system is society, with an improved deceased organ donation rate. Government and charitable organizations, but not organ recipients, should be the source of payment. Tenet 4: as a token of expressing gratitude to the deceased organ donors, funeral expenses reimbursement preferably should be offered to those who have expressed the wish to donate (donor registration); they should have been provided the option to decline the offer.
      These four tenets should be a guide, but not the ultimate solution, to introduce incentives and remove disincentives of deceased organ donation. We acknowledge the challenges in balancing the ethical principles and sustaining the altruism with appropriate motivations. Insofar as intrinsic motivation of organ donors is not jeopardized, we should explore extrinsic motivation for the honorable but difficult act in a sensitive and cautious manner.
      • Harbell JW
      • Mathur AK.
      Financial compensation for organ donors.
      It is clear that the goal of introducing incentives and removing disincentives is to increase the organ donation rate for the benefit of society. It is indisputable that a nonfinancial way of compensation is preferred before we accept a financial one, and, indeed, life cannot be compensated through financial recompense. If financial compensation is provided, we should ensure this will not be misused. The way to provide a token of gratitude and appreciation should strictly follow the most updated guiding principles of the World Health Organization,
      Sixty-Third World Health Assembly, World Health Organization
      WHO Guiding Principles on Human Cell, Tissue and Organ Transplantation.
      namely, the gift is not to be assigned a value in monetary terms or be disguised as forms of payment or rewards with monetary value that can be transferred to third parties. To ensure accurate communication during the donation process, organ donation coordinators should provide standardized suggestions and align information content during the donors’ family interview. With the large unmet need of organ donors worldwide in mind, we will, and we must, continue to seek a better system to enhance the organ donation rate.

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