Dienen minderjarigen en jongvolwassenen in aanmerking te komen als potentiële levende nierdonoren? Een ethische analyse van de argumenten voor en tegen.
Living kidney donation has become an increasingly established practice in European and US transplant centres, as the number of patients on the kidney transplant waiting list significantly outweighs the available supply of deceased-donor kidneys. Nevertheless, transplant centres disagree about the ap...
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| Other Authors: | , , |
| Format: | Doctoral or Postdoctoral Thesis |
| Language: | Dutch |
| Published: |
2015
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| Online Access: | https://lirias.kuleuven.be/handle/123456789/502663 https://lirias.kuleuven.be/bitstream/123456789/502663/1//KristofThys_thesis_final.pdf |
| Summary: | Living kidney donation has become an increasingly established practice in European and US transplant centres, as the number of patients on the kidney transplant waiting list significantly outweighs the available supply of deceased-donor kidneys. Nevertheless, transplant centres disagree about the appropriate minimum age to qualify as a potential living kidney donor: whereas most centres only accept donor candidates of eighteen years and older, a minority of European (7%) and US (2%) centres also accept minors. In addition, approximately one in five US centres report being reluctant about accepting donor candidates in their late teens and early twenties as well, unless there are exceptional circumstances for doing so. Whether minors and young adults should qualify as potential living kidney donors is subject to debate in the academic literature as well. Indeed, conflicting viewpoints were expressed as to whether they are sufficiently mature and independent to participate in the decision-making. In addition, uncertainty exists about whether the psychological benefits that minors might experience from donating a kidney are likely to outweigh the potential short-and long-term medical and psychological risks of the procedure, especially since younger individuals will have to live longer with the potentially adverse consequences of having a solitary kidney. In view of these different approaches, we aimed to study and critically appraise the ethical arguments in favour and against living kidney donation by minors and young adults. Specifically, we aimed to (i) analyse the guidance documents of professional expert committees and organizations; (ii) study the relevant national legislation in the Member States of the European Union; (iii) study the psychological and social impact of living organ donation in donors, as well as in paediatric recipients and in the family as a unit; (iv) analyse the ethical concerns and attitudes of international transplant professionals in clinical practice; as well as to (v) develop normative orientations and practical recommendations about the acceptability of living kidney donation by minors and young adults. Methods and results In chapter two, we analysed the guidelines, position papers and reports that provide recommendations on living kidney donation by minors. Through a systematic search in various literature databases, as well as the websites of ethics committees and transplant societies, we identified 39 documents that were relevant for the purpose of our study. Although all guidelines emphasized that minors need special protection, we observed two different approaches. On the one hand, 27 documents opposed accepting minors as living kidney donors, as minors were deemed too immature to appreciate the risks and benefits of the intervention and might succumb to family pressure much easier as compared to adults, even in situations in which the transplant is not urgently necessary or has no reasonable chance of success. Moreover, parental judgment might be clouded by a conflict of interests if the intended recipient is a close relative. Furthermore, the procedure was considered incompatible with the minor’s best interests, as the intervention does not provide any physical benefit for the donor, whereas involving significant short-and long-term medical and psychosocial risks. On the other hand, twelve documents recommended that minors might be exceptionally allowed to donate a kidney if adequate safeguarding mechanisms are in place: the minor’s maturity must be thoroughly assessed; he must be likely to experience a significant psychological benefit from donation; no other compatible donors or alternative therapeutic options must be available; and the procedure must be approved by the minor’s parents as well as by an independent body. In chapter three, we studied the national legislation on living organ donation by minors in 28 EU Member States, Norway and Iceland, highlighting possible differences with legislation addressing minors’ right to consent to other healthcare interventions. We identified the relevant legislation by consulting the websites of government agencies. Out of 28 countries that had legislation on living organ donation, five allowed minors to donate organs. Nevertheless, the conditions under which minors qualified as organ donors differed widely. Specifically, three countries required that minors are competent to provide their own consent (Norway, Luxembourg, Belgium), whereas two also allowed parents to approve the intervention on behalf of their child (Sweden, United Kingdom). Other requirements included the approval by a court or a national multi-disciplinary commission, a close degree of consanguinity with the recipient as well the presence of an exceptional circumstance. Although only five countries allowed minors to donate organs, 21 allowed them to consent to other healthcare interventions if they are deemed sufficiently competent, either from a fixed age onwards or based on case-by-case evaluation of their maturity. This finding indicates that the legal decision-making capacity of minors is relative to the nature and risks of the intervention. In chapter four, we presented the results of fifteen in-depth interviews with international transplantation professionals having different professional backgrounds. These interviews revealed a cautionary view as well. Specifically, professionals raised concerns about the long-term medical and psychosocial risks of donating a kidney at a young age, which have remained understudied. In addition, they worried that young individuals are more prone to unrealistic expectations or improper motivations as a consequence of their psychosocial development stage. Finally, younger individuals were deemed more susceptible to potential family pressure. The attitude of professionals significantly depended upon contextual factors, such as the age of legal majority, the potential benefits for the recipient, the availability of therapeutic alternatives and the strength of the donor-recipient relationship. Specifically, most professionals considered young adults eligible for living kidney donations, but they were deemed to require a more scrutinized psychological evaluation and informed consent process as compared to older donor candidates, especially when they intend to donate to a recipient from an older generation or an anonymous patient on the waiting list. By contrast, most professionals were not supportive of living kidney donation by minors but some exceptions were mentioned for older adolescents who have a very strong interest in protecting the recipient’s wellbeing, such as a teenage parent donating to his own child. In chapter five, we reviewed quantitative and qualitative studies studying the psychosocial impact of living organ donation in paediatric recipients, their donors, as well as the relationships within the family. Our systematic search of literature databases yielded 23 studies that satisfied our inclusion criteria. These studies revealed a mixed picture of favourable and unfavourable consequences. Specifically, donors experienced a heightened self-esteem, felt more self-confident and appreciated the emotional support that they received from professionals, family and friends. However, many donors also complained about post-operative pain and a lack of emotional support, even several years after the transplantation. As for the impact in recipients, many felt being more able to cope with situations of emotional and social distress and experienced improved relationships with their peers after transplantation. Nevertheless, several recipients also reported symptoms of anxiety or depression, worries about the future and felt ashamed about their body. As for the impact on the family, transplantation generated a special bond between donors and recipients, characterized by positive feelings such as gratitude and admiration. Nevertheless, donors sometimes had high expectations about the recipient’s lifestyle after the transplant and some recipients experienced emotional difficulties or distress, as they felt guilty or indebted towards the donor. We hypothesized that such adverse outcomes are more likely to occur if donors and recipients are unable to cope with the gift dynamics underlying the transplantation process. Conclusion Our research project revealed that minors and young adults have important vulnerabilities as compared to older donor candidates that relate to their potential immaturity and increased dependence upon their family, as well as the uncertain long-term consequences of the intervention for donor’s physical and mental wellbeing. Nevertheless, we identified considerable disagreement in legal and clinical practice about whether and under what conditions minors and young adults should qualify as potential kidney donors. Whereas most arguments in favour and against focus on young individuals’ decision-making capacity or their best interests, we argued that both approaches might be too focused on the individual and insufficiently take into account the impact of transplantation on the family as a unit. We concluded that these family interests might best be protected by allowing adolescents and young adults to donate a kidney if several protective conditions are fulfilled, such as a scrutinized multi-disciplinary evaluation of their capacity to consent, a strong involvement of their parents and the recipient, a close emotional bond between donor and recipient, as well as the approval by a hospital ethics committee. Our research project revealed the need for further research on the long-term medical consequences of donating a kidney at a younger age, especially the possibility of developing cardiovascular risk factors and diabetes at middle or older age. In addition, more studies are warranted to study how the gift relationship impacts the long-term psychosocial wellbeing of younger donors and recipients. Finally, further ethical reflection is needed about other strategies to alleviate the organ shortage for paediatric recipients, such as the arguments in favour and against granting children priority on the waiting list for deceased-donor kidneys. nrpages: 229 status: published |
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