There's nothing to fear from organ donation

Dr. Dominic Wilkinson posted the following opinion article in theage.com.au and although it's rather long for a blog post I'm including the full text because the issue of brain death versus cardiac death before organ donation is such an important and misunderstood topic.

Last week Professor Jim Tibballs, a Melbourne intensive care physician, caused controversy by publicly criticising current organ donation procedures. Professor Tibballs claimed that current practice for diagnosing death prior to organ donation is not consistent with the law. He also questioned whether people understand the circumstances in which their organs might be removed when they give consent for organ donation. 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 informed consent is of fundamental importance in organ transplantation. That means that people should know exactly what they are agreeing to when they sign on to an organ donation register. But most people who have donor cards, or who tell their families that they would like to donate, do not have this knowledge. They do not have a detailed understanding of what it would mean for their care before and after death if they were unfortunate enough to be critically ill in intensive care. And there is a tendency to gloss over some of the genuine uncertainties and controversies in the area because of a fear that public debate about how death is declared, and the processes involved in organ retrieval risks confusing and alienating potential organ donors.

In Britain, 1000 patients every year die on the waiting list for a transplant. There is a worry that the sort of debate that Professor Tibballs has initiated might lead to the preventable deaths of people desperately needing transplants.

There are several reasons why debate about organ donation could cause confusion. Organ donation usually 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.

There is disagreement between doctors, for example about whether it is ethical to give medicines like blood thinners to dying patients shortly before death to improve the chance that their organs will be able to help others.

The actual mechanics of organ donation are neither pretty nor pleasant. For donation after brain death, a patient who is connected to a breathing machine, whose heart is beating and whose 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 organs do not deteriorate. The body may be flushed with cold water, or connected to a bypass machine to keep the organs viable.

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 be killed 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.

My own belief is that Professor Tibballs' concerns are misplaced and overstated. The community has nothing to fear from consenting to organ donation, either for themselves or for their loved ones. In all of the intensive care units that I have worked in, in Britain and Australia, decisions about the declaration of death and the withdrawal of life support are made independently of decisions about eligibility for organ donation.

No patients, who would otherwise have survived, die in intensive care because they have consented for organ donation. Every effort is made to ensure that dying and recently deceased patients are cared for with dignity and respect. This is in accordance with national and international guidelines, and is how it should be.

But if we want to do more than just pay lip-service to the idea of consent for organ donation, then debate about transplantation and organ retrieval should be welcomed. Professor Tibballs is right in one respect - there should also be detailed information available to the community about the circumstances in which their organs may be donated, and what that involves.

There will continue to be differences of opinion about when it is permissible to donate organs, and people will hold different views about what they would like for themselves. One way that we could both respect patient autonomy, and allay community concern, would be to give individuals more than one option about organ donation when they sign on to donor registries. Some may prefer only to donate their organs if a brain scan has shown no blood flow to their brain. Others, like myself, may feel that if they were critically ill in intensive care and going to die anyway, they would want their organs to be able to help someone else - if at all possible.

After all, how often in your life do you get a chance to save the lives of up to six other people at no personal cost?

Providing choice to people who want to be able to donate their organs would be a better way of respecting their wishes, as well as allowing them to have greater control over the last moments of their life. This debate need not necessarily reduce the number of organ donors. By empowering people to have choice about the gift of life, it may encourage a greater number to talk to their family about their wishes, and to consent for organ donation.

Dr Dominic Wilkinson is a neonatologist and Nuffield Medical Research Fellow at Oxford Uehiro Centre for Practical Ethics, University of Oxford.

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