Guest Editorial - Can the Family of a Deceased Donor Direct its Organ Donation?
Mr. C. E. Karunakaran, Managing Trustee, NNOS Foundation
This article concerns itself with the dilemma faced by hospitals and organ distribution agencies when the family of a deceased donor asks for one of the retrieved organs to be allocated to a particular person known to them (not when the family seeks donation to a particular group of persons, a totally different issue, not looked into here). Two friends involved in this field – one named Pessimist (P) and the other, Optimist (O) - started discussing this issue.
P. First, this is illegal. There is no provision for such directed donation in our transplant law or any other law of our land.
O. No, this is completely legal, because the law of the land does not specifically prohibit it. All laws of the land are enacted to stop socially unacceptable practices, not to list all acceptable practices under the sun. Besides, no law maker can foresee all eventualities in a complex field. In this case, since the law does not prohibit such directed donation, concerned persons need to decide only on the basis of current acceptable medical and societal ethics.
P. But then, who owns a deceased person’s organ? Can a family member say I own it and will give it to whoever I want to? Should it not be decided by a State authority?
O. Agree that no one has full ownership. In a few countries, deceased persons' organs generally belong to society (presumed consent). In most others, including India, the close relative has control over it, to say yes or no to organ retrieval. Only after they say Yes, the State authority can come into the picture.
P. What is the extent of this ‘control’ ? Could the relative sell the organ to whoever pays the most?
O. No, it is conditional autonomy, on the same lines as living donation. There should be no commercial transaction in this, legally and ethically. Logic says that the close relative of a deceased person should be deemed to have the same control over the deceased person’s organ as a living person has over his/her own organ – to donate it to a relative or a friend out of love, affection, empathy. The American Society of Transplantation says this clearly in its Position Statement:
“A“directed donation” occurs when a donor family or a live donor directs the organ to a specific recipient. In most cases of live organ donation, the designated recipient is a family member, friend, or colleague. Thus, “directed” donation is the rule, rather than the exception, for live organ donation, as the emotional ties to the recipient are the basis for the donation. Directed donation is much less common for deceased donors, although it has occasionally led to successful organ transplantation in recipients designated by the deceased's family, based on family ties or friendships…The AST supports efforts to increase organ donation, including directed donations, based on principles of ethics, equality, fairness, and sound medical judgment. The circumstances surrounding a directed donation should be carefully assessed by the transplant team. Evidence of coercion, whether emotional, financial, or material, should lead the transplant team to refuse the donation.”
Thus, the agency over one’s own organ and the agency over a deceased relative’s organ are to be viewed through the same prism.
P. If it is to be the same prism, why a State agency to distribute the organs? Why not leave it to the relative to decide who to give all the donated organs to?
O. You sound very logical. The reality is that only in extremely few cases that the family of a deceased person finds that a relative or a friend needs an organ at that particular time. Experience shows this.
P. Okay, let us stick to logic. You agree with me that law does not specifically allow this, but since it does not specifically disallow it, you will use logic to decide. Does not logic tell you that all organ donations must be altruistic? Is such directed donation altruistic?
O. It is largely altruistic, because three to five organs generally gets donated from a deceased person. And very rarely, the relatives find that one of them is needed by a person known to them and so direct that organ; hence the organ will go to that directed person and not to the one on the top of the waitlist of the State agency that distributes organs. Even there, it gets donated to a relative or friend out of empathy, the same as in living donation. The other organs get allotted to the State waitlist per normal procedure. This may not fit your definition of 100% altruism, but even so, such a donation has to be accepted as it saves the life of a person, even if not the most deserving one, per accepted criteria (like all living donations) and a few more fully deserving persons who may take the other organs. Most in the world consider this as the key factor in deciding on this issue. Avoid “wasting potentially life-saving resources” is a common refrain. The American Medical Association in its Code of Medical Ethics puts it succinctly: “Directed donation policies that produce a net gain of organs for transplantation and do not unreasonably disadvantage other transplant candidates are ethically acceptable.”
P: Even if I agree that this kind of direction for one organ is also mostly altruistic, I have one concern. If I start allowing this in my State, will it not open a Pandora’s box with people pretending it to be altruistic, but really selling that organ surreptitiously, as happens often in living donation? Besides, if I am a decision maker in this area, why should I take a needless risk of possibly getting investigated later?
O: Sounds logical. Experience so far shows that it is extremely rare for such directed donations to happen in Tamil Nadu, where it is officially allowed (through Guidelines established by the Advisory Committee) and in other countries too where it is allowed. And there is no hint of any wrongdoing anywhere. Among the around 3000 deceased donor organs transplanted in TN over eight years, the number of such cases were in single digits. There have been a few more cases too in other States like Gujarat and Maharashtra. ‘Just one or two such cases in a couple of years’ in the UK.
As for risk taking, all decisions in the transplant field carry some risk. In TN, there is a requirement that the donor hospital head has to declare that he has looked into the issue and is convinced that the directed donation sought is genuine. It will be unethical to deny lifesaving opportunity to three or four persons just to keep ourselves comfortable.
P: Your last point seems valid. However, should we not be establishing some Rules such as restricting such donations to near relatives and to those that have been in the waitlist for quite some time?
O: My view is to avoid all kinds of restrictions and leave it to the discretion of the organ distribution agency to take a call in each case. It can be to anybody, so long as it is a genuine direction. Other countries go out of the way to help the donor family when they feel a need to help a friend or relative. If the organ is not found to be suitable to the directed person, swap donation with another living donor is arranged to help both sides, or the directed person is given priority in organ allocation in future. I strongly recommend such outgoing help to the donor family. Ultimately, it is such empathetic approach and flexibility given for decision making at the ground level that will promote organ donation (as experienced in TN) as against any over centralised approach and bureaucratic reading of the letter of the law.
P: Thank you for convincing me that scarce lifesaving resources should not be wasted and that the feelings of the altruistic donor family has to be respected, they need to be the key factors to inform our approach to this issue. I am considering changing my name to yours.
O: Hi, Welcome, Optimist.
The two Optimists then shook hands and went their ways.
- Copyright © 2021. Published by MOHAN Foundation
- Keywords: presumed consent, directed donation, The American Medical Association, conditional autonomy, Advisory Committee, organ allocation