Organ Donation and the Culture of Informed Consent

by Dr. Nileema Conlon Vaswani in

In an attempt to address the crisis surrounding the availability of organs for transplant, the British Government is suggesting that the public should be assumed to be donors unless we indicate otherwise. Currently, the laws regarding organ donation require explicit consent. The moral question is whether individual consent is under threat or whether consent can remain intact even if one will have to actively refuse to donate rather than actively consent to donate as is the case under the present laws?

Organ transplants present an unusual moral dilemma. While it is natural and right to hope for an organ if one is a potential recipient, there is also the awareness that in order to get an organ, someone, somewhere, has died and leaves behind a grieving family. Of course, these deaths bear no causal connection to the recipients but it is an unfortunate fact that for someone on the transplant list to receive "good news", i.e., news of an available organ, someone else usually has first to die. Of course, organ transplants do take place via living donors as well, but as the government's proposals pertain to people who have died, the discussion will focus on this group of donors.

The moral awareness of how organs are procured does not detract from the fact that there is an acute shortage of organs and that many people die waiting for transplants. Even when an organ becomes available, the moral questions of distribution, i.e., who ought to be given it and on what basis, need to be tackled. The Government is right to look for a solution to the crisis but is assuming that all of us are donors the right moral route to take?

At a first glance, the new system will be no more than a reversal of the old system and does not present moral challenges. In both systems, the individual retains the right to decide what happens to his body after death. But notice how the practice of informed consent will be altered under the new system. The consent of everyone will be presumed unless otherwise indicated. The onus is on the individual to refuse permission for his organs to be procured rather than with the State to obtain permission to procure his organs.

Informed consent forms the basis of ethical decision-making in medicine as, in most cases, it would be morally wrong to carry out a medical procedure without it. Where the individual patient is unable to participate in the consent process, a process that enables agreement or refusal to the suggested procedure, a proxy decision-maker such as a parent or guardian can participate in the consent process instead. Even in medical cases where there is no formal consent in the form of a document, tacit consent always exists, for example when we agree to take a recommended drug or vaccine. The only time when it is morally right to treat an individual who is otherwise capable of participating in the consent process without consent is under emergency circumstances. This is when it is morally right to presume consent, i.e., assume we have it because it is reasonable to assume that in the absence of any information, an individual would like to be treated or have his life saved. An accident victim, for example, who is unconscious, by default ought to be treated as best we can until such time that we have information that suggests that he would prefer not to be treated or that he would not like certain types of treatments. The reason why this is morally permissible and obligatory is because, as we have no way of obtaining his consent, we presume consent and act on his behalf. It is important to note, however, that presumed consent, as we currently know it as a moral concept, exists for the benefit of the individual on whose behalf we presume to have his consent and not for the benefit of someone else.

For organ procurement to occur on the basis of presumed consent would be a shift from the norm and would alter the culture of informed consent. It may also present some practical problems that may in turn lead to moral ones. It is possible that someone may not have been able to register his refusal of consent to organ procurement before he died and would then have his organs taken from him. Also, it is not clear how difficult it would be for people to register their refusal of consent.

The Government is right to be concerned that when we are facing an organ crisis, a large number of "would-be" donors die without making their wishes known and hence render their organs useless. If these are the organs they want to procure, they are right to revise the current law. But the focus of the new proposal ought not to be about presumed consent but about determining the accuracy of people’s wishes. If a person wishes that his organs be procured after he dies, his wish is important and the Government ought to come up with a system that can honour his wish. Equally, if someone does not want to have his organs procured after death, this wish ought also to be known and honoured. Instead of a default system that assumes that all of us are organ donors, a more effective and accurate system might be one that requires us to register our wishes, regardless of what these wishes are. We could all be required to fill out a form that indicates, either way, what we would like done with our organs after we die. If, for any reason, the wishes of the individual are not known before he dies or his record cannot be located then, like other cases of presumed consent, we ought to err on the side of caution and not procure his organs.

The public ought also to be offered, via the same form, the option of donating certain organs and not others if they so wished. The role of the family could also be discussed. Some people, for example, might wish to donate their organs but would like their families to have the right to override these wishes if they are distressed. It is important to bear in mind that organ procurement and donation occur under very trying circumstances. For a family that has lost a relative in a car accident, for example, and seen the sudden end of life for their loved one, providing organs and a "fresh lease of life" to others at the same time may not be easy. Equally, there are families that seek comfort in knowing that their loved one’s organs are helping others and feel that their relative is still living through others.

A system of presumed consent would be based on increasing the number of available organs rather than on honouring individual wishes and for this reason is morally problematic. If the Government's proposal is intended to encourage people who already want to be organ donors to register their wishes, then that's what it ought to do. If it believes that there are many more donors than are currently registered, then of course it ought to take steps to correct the problem of lack of registration. But it ought not to assume that the rest of the population is also happy to donate their organs and place the onus on them to register their refusal.

Rather than having a system that presumes consent, a system that knows the wishes of the individual and strives to honour them would be more accurate. While the current organ crisis cannot be undermined, we must be careful to ensure that by resolving this crisis we don't end up creating a moral one.