The removal of organs from a deceased person is an act of national solidarity between the dead and the living. In this sense, it is well founded on the notion of “presumed consent”. But the wishes of the deceased and their loved ones are still taken into account.
An article by Guillaume Durand, published in The Life of Ideas in March 2017, criticizes the recent law on the conditions of organ donation in France. The philosopher questions the principle of “presumed consent” of the deceased to the removal of their organs, and argues for explicit consent and refusal. As a hospital nephrologist, head of a kidney transplant hospitalization unit, I would like to provide some clarification on the concept of donation and the status of the body that are at the heart of the law, and discuss certain presuppositions of the argument proposed by G. Durand.
The terms of the debate
As the author points out, presumed consent has been the basis for organ removal from deceased persons in France since 1974. Until January 2017, it was stipulated that the doctor and the care team (the organ removal coordination team) had to endeavour to obtain the family’s consent. Only the person registered on the National Refusal Register (RNR) accessible to all from the age of 13. Since January 2017, presumed consent has been strengthened by minimizing the role of relatives in the decision to remove organs from the deceased person. A refusal of removal by relatives, when the deceased patient is not registered on the refusal register, must now be justified in writing.
In the first part of his argument, Guillaume Durand questions the fact that presumed consent is real consent by comparing it to compulsory organ removal or imposed surrogate pregnancies. Then, he opposes the fact that relatives can deduce from the life led by the deceased a consent to organ removal. In the second part, he claims full and complete ownership of the body by each person until after death, ownership that would be called into question by presumed consent.
This debate around notions such as presumed consent and “strong” or “weak” explicit consent is interesting and undoubtedly necessary, but it is not made up of new ideas (as the quoted epigraph suggests), since it dates from 1974. I would like to add a few ideas to the discussion.
Solidarity and community
Currently, presumed consent only concerns this particular situation: organ removal from deceased persons. For living persons, since the Nuremberg Code (resulting from the trials against Nazi criminal doctors in 1946-1947), explicit consent has been required in therapeutic medicine and has never been called into question. As such, it does not seem fair to compare the presumed consent of a deceased person to mandatory consent for organ removal from living persons, or to an obligation to become pregnant for others, since these last two categories of persons are living.
But why, in France, have we historically preferred presumed consent to explicit consent for organ removal from a deceased person? There are two main reasons. First, it is to encourage organ donation and therefore transplants for sick people, and to reduce the costs of increasing the technicality of medicine. The second reason is cultural. Solidarity is imposed between citizens, particularly in the field of health: healthy people work and pay for the sick, while considering that the transition from one category to the other is possible during a lifetime.
The French health system is united and collective. However, explicit consent leaves more room for the expression of individual interest; it therefore does not seem entirely in line with this French heritage. The removal of organs from a deceased person is a gesture of solidarity between the dead and the living. Is this imposed solidarity? No, since there is a register of refusals, now accessible online. And the opinion of relatives remains binding on the removal.
Presumed consent promotes organ harvesting post mortem. It promotes the pool of available organs and transplantation. Spain and Belgium, the two European countries with the highest organ donation rates, have also chosen this type of consent. For its part, France has chosen to promote organ donation. post mortem rather than live organ donation (unlike in Anglo-American countries). In the United States and Great Britain, the proportion of organs coming from living donors is 40% (compared to 15% in France for kidney transplants, according to the report of the Biomedicine Agency in 2013). This notion must be taken into account in the debate.
Should we still, today, favor transplants? Certainly, for reasons of survival and cost. On an individual level, organ transplants allow those with heart, liver and lung failure to live, and those with kidney failure to live significantly better and longer. Heart and lung transplants are not possible from living people and the shortage of grafts will require doctors to choose which patients to transplant.
But on what criteria? Transplantation has been elevated to the rank of medical service rendered and the doctor has an obligation of means – not of results. In the absence of transplantation, the cost will be collective in addition to being individual, particularly in the case of renal failure, dialysis being a much more expensive therapy than transplantation.
On the ownership of bodies
What will change in practice with the 2017 law that modifies the weight of relatives in the decision? Even if the notion of presumed consent is strengthened and if the opinion of relatives and family is no longer required to perform organ removal from a deceased person, it is not excluded. According to the current, deliberative mode of the relationship between doctor and patient, in the event of the death of the patient (or unconsciousness), the explicit consent of relatives is sought.
Because donation remains a gift from relatives. In current clinical practice, it is totally impossible to oppose relatives who would refuse to have organs removed from a deceased person, and it remains to be proven that the new law changes current medical practices. Let us take a recent example in a CHU Parisian. A 20-year-old woman dies in an accident on the public highway. She had told her mother that she wanted her organs to be harvested in the event of her premature death. Her mother therefore initially agreed to the harvesting. The parents had been separated for a long time. The father, who arrived later, opposed the harvesting, and nothing was done by the organ harvesting team.
This practice and these reflections have already been analyzed by Philippe Steiner. For the same reasons, it remains to be proven that explicit consent, even “strong”, will guarantee the removal of organs in the event of opposition from relatives. Indeed, a simple law is not enough to change these behaviors, which are habits deeply rooted in French society. What will happen if recourse to violence is considered in the event of discordance between the opinion of relatives and the opinion of the deceased patient? The loss of trust in the medical profession and society as a whole would be catastrophic.
Finally, the ownership of one’s body by a deceased person deserves to be debated, and the status of the deceased body calls for more advanced reflection. The Civil Code cited by Guillaume Durand defines, in addition to the inviolability of the body, the principle of its non-patrimoniality. The human body is not a heritage and cannot as such be the object of a commercial exchange. That said, in the event of a suspicious death, the deceased body belongs neither to the family nor to the deceased person, and the State can dispose of it as it wishes. As long as the status of the body is not clearly defined in the context of organ removal, presumed consent cannot be considered as a challenge to individual rights and a “nationalization” of bodies, whose organs would become public property.
Once again, the existence of a register of refusals and the consideration of the wishes of relatives remain guarantors of individual and family interest. Furthermore, the possibility of causing harm to a deceased person by removing their organs remains entirely debatable. Even if there is no fact of our personal life that points towards presumed consent for organ removal, relatives are part of the social interactions that define the identity of the individual. As such, they are best placed to make the final decision.
Presumed consent is the method chosen in France and other countries to promote organ harvesting. post mortem and therefore the graft. It was defined as a “presumed solidarity”. Today, still 30% of the samples post mortem are refused. It is therefore necessary to encourage reflection and knowledge of the ins and outs of organ donation, to encourage a position to be taken during one’s lifetime and, thus, help relatives to make the decision that is most faithful to the wishes of the deceased.