Organ Donation: Ignoring the Advance Directive in Deference to the Family: Is that Ethical and Beneficial?
It is generally common knowledge that there is a vital need for people to agree to be an organ donor so that when they die their organs can be transplanted into critically ill patients in hopes of saving those patients’ lives. Filling out a form, identified on a driver’s license, giving permission for organ procurement is all the current law says is necessary to be a donor. In certain cases the problem is that when the patient has died and the request to be a donor is identified, the organs are not procured and they go to the grave with the body. Why, you may ask, is the request of the person not followed? In those cases, the Organ Procurement Organization, which is the federally mandated organization to arrange the procurement and assist in the distribution of organs, may decide not to accept the request of the person, now deceased, not because the organs would be unhealthy but because of strong family opposition regarding the donation. Why should this happen? Why should the autonomous and legal request of the person be ignored?
An excellent discussion of this issue can be found in the American Medical Association’s Virtual Mentor website.
It is suggested in the article written by Ben Berkman that issues of concern about public opinion by going against the wishes of the alive family and who could be able to argue their case while respecting the prior wishes of the patient who, now dead, cannot argue, “unwillingness to inflict more conflict and grief on a reluctant family who is already in great pain,” “concern about potential law suits [since] the deceased’s wishes take lower precedence than the family’s wishes because only the family can sue."
Through the Federal Patient Self-Determination Act which was passed in 1991, the concept of patient autonomy, encouraging and validating the use of advanced directives (living will, power of attorney, etc.) was reinforced from previous acts. Despite this Act, those responsible for organ procurement “still insist on consulting the family about organ donation, even if there is a clear advanced directive or donor card.”
What can be done to make this aspect of organ procurement ethically fair to the autonomous wishes of the patient? The article suggests a court test case based on the current laws, or add laws that would encourage pro-active implementation of the patients request or punish those involved in organ procurement who disregarded the patient’s documentation requesting organ donation. Another option, not mentioned in the article, which has occurred in European countries is that all persons are potential donors by default unless they formally opt out.
A visitor to my bioethics website, who identifies himself as an organ recovery coordinator, previous paramedic and also a double lung transplant recipient, recently wrote me the following:
"In the state that I work in, we have first person license consent. It has been our practice if a deceased person has made a decision to be a donor on his license, we WILL do our best to make that happen. And yes we have had some families disagree. At that point we will evaluate the situation. If the deceased donor is "young" or good health where many organs could be recovered ,thus saving up to 8 lives we will proceed with the recovery. We have had a few families that were very opposed to the donation. The deceased were in very poor health and most likely would not have been a good donor. At best they were going to be liver only donors due to their health situation. Twice now (that I can remember) we have decided it wasn't worth proceeding with the donation, because of poor donor quality and family opposition. We believe that it is our responsibility to carry out that persons wish when it has been put on their drivers license. Starting in 2003 my state changed the law where a family cannot change someone’s decision on their drivers license. As a recipient and a resident of this state I agree with that law. I have seen many times in my career of working in a hospital (in various roles),a family will rescind the wish of the deceased cause "they" didn't understand or agree with donation. I would love to see the program that MANY European country have (and is very successful); you are a donor UNLESS you fill out a form and op-out. I know what kind of hoop-la that would cause in this country if we tried to get that passed.”
I, too, understand the need for organs for transplant and I am appalled that despite the need and the federal government setting high goals for procurement, that the legal requests of deceased patients who had authorized the donation of their organs are being ignored in deference to the family. Is this an ethical and beneficent action? I think not. And who is really winning from this behavior? I would be most interested to read how my visitors to this blog stand on this issue. ..Maurice..
p.s.- For more on organ procurement and transplant, go to the postings here in February 2005 archive.