13 January 2008

Organ Donation

In The Guardian today is a story and set of related materials (blog, podcast, etc.) about proposed changes in the U.K. organ donation system. As many of you know, this is a matter with which I have had recent excrcuciating experience here in the U.S.; when my son Jeff died last spring his mother and I decided to donate his organs for transplant.

The proposed policy under discussion in the U.K. would change their system from an 'opt-in' to an 'opt-out' scheme. Instead of presuming, that is, that a brain dead individual would not want to donate their organs, the new proposal would presume that they do want to donate. Anyone who has an objection (e.g., on religious grounds) has the option to indicate in advance that in the event of their death they do not want their organs taken for transplant. And under the scheme being considered in the U.K., medical staff would have to consult with the relatives of the dead individual before proceeding. The family would have some (as yet unspecified) sort of veto. This is roughly the system now in place in Spain, which has the highest rate of organ transplantation in the world.

In the U.S. we have an 'opt-in' system. An individual has to indicate that they want to be organ donor. And the law requires that medical staff broach the subject with the family of the deceased. I have to say that in my experience the medical staff was kind, sincere, and tried very hard, but seemed completely ill-at-ease. That is hardly surprising. Jeff's mother and I were at the time (and, many days, still are) completely bereft. But once it was clear that Jeff was brain dead, the decision about organ donation was 'relatively' easy and we both agreed readily.

In retrospect it seems to me that one of the residents drew the 'short straw' and thereby got the unenviable task of approaching us. I think that an opt-out system would make all this way easier; medical staff would be able to say "Every indication we have is that your son would have agreed to donate his organs, what are your feelings about that?" It would make the staff's impossibly difficult task less daunting. It would frame the issue in a way that placed the emphasis on what the dead person did or would want, instead of on what the surviving relatives want. It would then take pressure off the family too. And, perhaps most importantly, it would increase the number of organs available for those who might well die otherwise.

I will say that reading the comments over at The Guardian I am stunned at the vituperative self-absorption that many people are expressing. The ranting is simply beyond belief. I am perhaps a hard-ass on this. But if you want to 'opt out' or not 'opt in' depending on the scheme, that is fine. But you ought to then be inelgible to receive a transplant (perhaps lack of willingness could merely count negatively in whatever equation is used to determine your place in the inevitable queue).

Here are some cross-national 'facts' from The Guardian story:

· The UK has an opt-in system of organ donation. People have to be willing to donate some or all of their organs after death. They must sign the Organ Donor Register, a system sometimes called 'informed consent'.

· Germany, Ireland, the Netherlands, the United States, Australia, Japan, Canada and New Zealand operate similarly.

· Many other European countries operate a different system, known as opt-out or 'presumed consent'. Unless a person records in writing their unwillingness to give organs, it is presumed they have consented. This usually, but not always, produces higher rates of organ donation than in opt-in countries such as the UK.

· Spain, Italy and France have a 'soft' opt-out system, whereby the families of potential donors are still consulted and can, in effect, refuse permission for body parts to be retrieved.

· Many British transplant experts cite 'the Spanish model' as the best. Spain has the highest rate of organ donation in the world: 33.8 organs per million of population compared to just 12.9 per million in this country. In Spain, 85 per cent of relatives approve donations and just 15 per cent refuse permission.

· Austria has a 'hard' opt-out policy in which families are not consulted. If the individual has not opted out in writing, he or she is considered to be a donor.

· The US system of 'required request', or required referral, compels health professionals to inquire about the possibility of organ donation when someone is close to death. Under the required referral guidelines, 'it shall be illegal, as well as irresponsible and immoral, to disconnect a ventilator from an individual who is declared dead following brain stem testing without making proper inquiry as to the possibility of that individual's tissues and organs being used for the purposes of transplantation'.

I would urge everyone out there to find out whatever steps are needed to be in the 'yes' column for organ donation. Then take those steps. And get your loved ones into the right column too. I will say - from a position I hope none of you ever actually experience - that deciding to donate Jeff's organs has brought some small consolation for having lost him. I miss Jeffrey every single day. I am glad some parts of him are out there still, helping others go on with their lives. I wish those folks well.

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