The paradox of organ donation consent

In Australian newspapers today a Melbourne intensive care physician, Jim Tibballs is reported as criticising current organ donation guidelines on the grounds that donors are not actually dead at the time that organs are removed. Other doctors have called Professor Tibballs’ comments “irresponsible” on the grounds that they might cause a significant fall in organ donation rates.

This debate highlights a paradox at the heart of consent for organ donation. We think that it is important for individuals to give informed consent for their organs to be used after they have been declared dead. That means that they should know exactly what they are agreeing to when they sign on to an organ donation register. But debate about how death is declared, and the processes involved in organ retrieval risks confusing and alienating potential organ donors. So there is a tendency to simplify and gloss over details when organ donation is discussed publicly, and a fear of open debate.

There are several reasons why debate about organ donation could cause confusion. Organ donation sometimes occurs after brain death, but also takes place in some patients after so-called ‘cardiac death’. There is variation in the criteria used for defining death between different countries and even between different hospitals. The actual mechanics of organ donation, including the procedures used to maximise the chance of an organ being viable for transplant are neither pretty nor pleasant. For donation after brain death, a patient who is connected to a breathing machine, whose heart is beating, and body is warm, is ushered into an operating suite where his (or her) organs are removed one by one. Donation after cardiac death requires surgeons to be present at the moment of ‘death’, and to intervene rapidly after the heart stops, so that the organs do not deteriorate. The body may be flushed with cold water, or connected to a bypass machine to keep the organs ‘alive’.

It is also easy for debate about organ donation to be side-tracked by spurious issues or concerns. So some people fear that they will not receive full treatment by doctors so that their organs can be used to save others. Other people worry about being conscious and aware of their organs being removed.

There are two alternatives. If consent for organ donation is as important as it is made out to be, then debate about organ donation should be welcomed. There should be a detailed information available to the community about the circumstances in which their organs may be donated, and what that involves. The community should be reassured that decisions about the declaration of death and the withdrawal of life support are made independently of decisions about eligibility for organ donation. To both respect patient autonomy, and allay community concern, individuals could be given several options about organ donation, including alternatives not currently available such as donation of organs prior to death. This would allow them to have greater control over the process of their death and the use of their organs.

Alternatively, we may come to think that the benefit of organ donation is so great that we should reject the the current charade of informed consent for organ donation. After all, at present thousands of patients per year die for want of an available organ. Yet every day potentially life-saving organs are buried or burned because their owners did not make their wishes clear during life, because their families could not come to terms with the idea of donation, or because doctors failed to approach families to ask them for permission. Consent is relevant to what happens to us while we are alive. But once we are dead, our organs cannot benefit us, while they could save the lives of up to 6 others. Perhaps it is time to contemplate mandatory organ donation after death?

Donors not truly 'dead' when organs removed The Age 20/10/08

Organ donation after cardiac death: legal and ethical justifications for antemortem interventions J Tibballs MJA Feb 08

Radical organ retrieval Practicalethicsnews

When the heart stops: harvesting organs from the newly (nearly) dead Practicalethicsnews

Comments

[Carl Shulman]

"mandatory organ donation"
This is a rather Orwellian phrase, like 'paid volunteering' or 'mandatory volunteer work.' It would be more honest to talk about mandatory organ removal. And why not just change the default to donation first, avoiding massive conflict with religious objectors, and perhaps restrict access to donated organs to those who signed up to donate?

[Dominic Wilkinson]

Thanks Carl,

I agree that it probably isn't a good term. Organ conscription might be a better one and has been suggested by others (eg Spital Am J Kid Dis 2002).
Presumed consent would be a useful first step, though some have questioned whether the term 'consent' is valid in such a paradigm. It would be a step away from the current emphasis on autonomy and consent. The estimates (eg Abadie J Health Economics 2006) are that presumed consent would increase organ donation rates by 25-30% in countries like the UK or Australia. One reason why it isn't higher is that in almost all countries where it applies in practice families are offered (and sometimes choose) the option of refusing organ donation.

cheers
Dom
PS I might also make the point that I am not necessarily advocating organ conscription, but highlighting that there may be good reasons to place less emphasis on informed consent for organ donation.

[Dominic Wilkinson]

PS I might also make the point that I am not necessarily advocating organ conscription, but highlighting that there may be good reasons to place less emphasis on informed consent for organ donation.

Dom