Wednesday, June 29, 2022

The Young Bravehearts

In a move that gives hope to those waiting for organs, the Delhi High Court has said that minors can donate in rare cases. But the consent should be supported by parents or guardians to prevent any exploitation. By Dr KK Aggarwal

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All people should consider themselves as potential organ and tissue donors regardless of age, health, race or ethnicity. No one is too old or too young to be a deceased donor and most major religions support it. In a novel move, the Delhi High Court recently said that a minor can donate an organ or tissue in a rare situation unless there is a risk to her life. Justice Sanjeev Sachdeva set up an expert medical board to assess any risk to the life of a girl who wished to donate a part of her liver to her father who had severe liver cirrhosis. The Court said that “there is no complete prohibition in a minor donating an organ or tissue prior to attaining majority. Donation is permissible but in exceptional circumstances and in accordance with the rules”.

Earlier, a committee set up by the Delhi government had refused permission to the girl to donate her liver as she was a minor. However, the Court said: “There is no medical opinion in the present case to suggest that there is a potential risk to the petitioner. The minor is aged over 17 years and 10 months. The decision of the committee of rejecting the representation of the petitioner solely on the ground that the petitioner is a minor is not sustainable.” In many states, people younger than 18 can register for organ donation, although their families will have the final say if the occasion arises before they turn that age.

Internationally, the Amsterdam Consensus Panel, an international panel of experts in transplantation, accepted a proposal that minors should not be allowed to donate. The US Live Organ Donor Consensus Group, a national panel of experts in transplantation, however, argued that minors could ethically serve but only in rare and exceptional circumstances. The American Academy of Pediatrics (AAP) concurs that it may be permissible for a minor to be a living organ donor provided that certain stringent criteria are met. The US Consensus Group offered four conditions, all of which must be satisfied for a minor to ethically serve as an organ donor.

  • Both the potential donor and recipient should be highly likely to benefit from the act. This is most likely to occur if donations by minors are within an intimate family setting where psychological benefit to the potential donor is likely to be significant. Also, in cases where the chances of success are low, a donation should not take place to reduce the psychological burden the child donor may experience if the donation fails. Moreover, minors should never be considered as potential donors for strangers or people they know only through the internet.
  • The surgical risk to the donor should be extremely low. One example is that minors should be restricted to serve as living kidney donors. One could envision the rare situation in which an older adolescent might be permitted to donate a left lateral segment of the liver on the basis of his ability to make an informed decision, but data to support the long term safety of donation of the lung, small bowel and right liver lobes is currently insufficient to permit those younger than 18 to donate these organs.
  • The third condition mandates that “all other opportunities for transplantation have been exhausted, no potential adult living donor is available, and timely and/ or effective transplantation from a cadaver donor is unlikely”. To ensure that the child is truly a donor of last resort, he should not undergo donor evaluation until other potential living donors have been evaluated and found unsuitable to donate. Children should also not be considered as living donors if deceased donors are likely to become available for their intended recipients.

This merits further clarification. For a child to serve as a donor of last resort, the recipient should be likely not to survive the wait to receive a deceased donor organ despite being an excellent candidate for transplantation. Examples of such situations include cases where a potential kidney recipient has exhausted all sites for dialysis access or is highly sensitised to most potential donors but not the identified child donor. Some have argued that condition 3 be bypassed when the donor and recipient are identical twins because of the additional benefit provided to the potential recipient, who will not require immune-suppression.

  • The minor should freely agree to donate without coercion (established by the independent donor advocate). The Advisory Committee on Organ Transplantation of the US Department of Health and Human Services recommends that all living donors have a donor advocate. His primary obligation is to help donors understand the process and procedures and to protect and promote the interests of the donor. If the donor is a minor, the donor advocate should have (a) training and education in child development and child psychology; (b) skills in communicating with children and understanding their verbal and nonverbal communication; (c) working knowledge of transplantation and organ donation. Thus, donor advocacy will usually require partnering of professional colleagues to provide all these skills.

Minors who could be potential donors must be evaluated for maturity and cognitive ability. Before they are allowed to give assent, they must be educated about living donation and counselled at various junctures that it is permissible to say no or to withdraw at any time before the procedure. No minor should begin the consent process without the support of his parents and/or guardians.

It is important to acknowledge that parents who give permission for their minor to donate have a potential conflict of interest due to their relationship with both the donor and the recipient. Also, because of the recipient’s illness, the parents may be prone to focus on the effect of their decision on his health. Parents must have some insight into their own conflicts of interest and the donor advocacy team should help them analyse their decision-making processes.

Although the US Living Organ Donor Consensus Group did not provide a lower age limit, younger children are obviously less able to make an informed and voluntary decision. Using a Piagetian conception of development (Jean Piaget was a Swiss psychologist known for his work on child development), a firm lower age limit of 11 years can be set on the basis of the developmental stage of achieving abstract thought. Institutions that are uncomfortable with donation by preadolescents could alternatively choose a higher age cut off (eg, 14 years).

  • In addition to the four criteria enumerated by the US Live Organ Donor Consensus Group, AAP would add a fifth criterion. This would require the emotional and psychological risks to child donors to be minimised. Data in bone marrow transplantation literature suggests that these risks can be minimised by preparing future donors through medical role playing, allowing them to ask questions and including them in the decision making process.

Families need to be educated about the psychological risks that the donor may feel, particularly if most of their resources remain focused on the ill recipient. Families must also be educated about the importance of affirming the donor’s role and the discomfort that some of the procedures may cause. 

—The writer is President, Confederation of Medical Associations in Asia and Oceania, and former National Presiden

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