There is a regularly-made claim that the definition of death was invented in the late twentieth century precisely to make clear when it would be possible to ‘harvest’ organs for transplantation. And what the definition now amounts to is that the patient has irrecoverable loss of brain function and irrecoverable inability to breathe unaided. Of course this is not strictly a definition, but a widely (though not universally) agreed way of establishing that death has occurred, and the detail of how to establish it is the subject of clear guidelines.
It seems to me that these guidelines are not and never have been there simply, or even mainly, to facilitate organ donation. They serve two purposes – one primary and one secondary. The primary purpose is to enable medics to confidently identify the point at which death has arrived and where further intervention is no longer appropriate and to be able to share this understanding with the family. (This is not the same as it being futile, and therefore be withdrawn from a living but dying patient).
The secondary purpose is to give confidence that where organ donation is to be considered, it will be from a deceased donor, not a person who is alive or capable of being resuscitated. Though we might note here that even the possibility of organ donation occurs more rarely than sometimes we imagine – less than 1% of deceased people die in circumstances where they can become an organ donor. 99% die in situations or with conditions that make donation impossible in any event.
Now, it is understandable that people should ask – for whatever reason – whether we can be sure that this is how death can and should be established, because the idea that we are treating living people as if they were dead or, worse, removing organs from those who might recover, would be truly horrifying. Of course, people have had such fears for much longer than transplantation has been around. In the nineteenth century people would ask not to be put in their coffin or buried for a few days after their apparent death, as they were not sure that the signs of death were at that time an adequate measure. But anxieties are perhaps more acute now that the body can be maintained in ways that makes it look very much as if the person is alive.
These are hugely important questions that we must examine, and we must continue to do so in the light of new knowledge and understanding. Moreover, we should do so openly, with fears expressed and reasons elaborated. But whilst there are those who for religious, spiritual or other reasons do indeed have anxieties about the way in which death is diagnosed, I do not believe there to be a crisis of trust in current practice. This is evidenced by the fact that as many as 90% of people are supportive of organ donation; and that in the most recent potential donor audit, in less than 1% of cases was doubt about the ‘brain death’ test given as a reason for families declining to agree to organ donation. In many cases the reason for refusal was that the family was not sure of the deceased’s wishes. Yet when 90% of the population are in favour of organ donation, and 99% of potential donations go ahead when the deceased is on the register, we must conclude that some opportunities are being missed.
The 2011 Nuffield Council Human Bodies report emphasised the importance of the altruistic motivation of donors and families, and of trust in medical practice (see also an earlier blog). It is interesting that whichever way we approach issues around organ donation and transplantation we come back to trust. Trust that the patient will be properly treated before and after death; trust that wishes will be respected; trust that organs will be used appropriately. Trust is to be nourished and protected – in its report the Council expressed concern that, for example, a system of presumed consent might undermine trust in medical practice, and we would need to think very carefully before taking that risk.
Trust is vital, but the reason that we have fewer organ donors than are needed does not appear to be about a lack of trust, nor indeed a lack of altruism. It seems more likely to be about the failure of our systems to facilitate donation in enough of the cases where the deceased wished to donate. So if there is one area in which trust can still be nurtured, perhaps it is this: those who would wish to donate after their death need to be able to fully trust that those particular wishes will be met wherever possible.
I am fascinated by the buzz about organ donation and the risks and challenges faced by doctors and donors and unsuspecting donors. However, I am curious at the almost total silence about the aged/ elderly in the society and their role in receiving and giving of organs etc. Since it may seem that not many organs come from this group, I wonder how long will the present source of organs, especially kidneys become unsustainable and whether this question is being considered by institutions such as yours in the UK and elsewhere.