Bioethics Discussion Blog: Organ Donation: Ignoring the Advance Directive in Deference to the Family: Is that Ethical and Beneficial?

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Wednesday, January 25, 2006

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.

10 Comments:

At Wednesday, January 25, 2006 8:53:00 PM, Anonymous Moof said...

Dr. Bernstein, I wasn't aware that families could upstage a deceased relatives wishes in that way ...

Perhaps some more effective on-site grief counseling could salvage such situations ...

I'm unable to be an organ donor, but I've discovered that I am allowed to make a "whole body" donation ... and that's what I'm trying to get information on so that it automatically happens when I die.

I've had a few family members express their reservations about it, and I would hate to think that they could prevent it from happening once I was gone.

That said ... although I intend to make a "whole body donation," and will also eventually need a transplant myself, if I live long enough, I still wouldn't like to see the European model put into practice here in the States.

Rather than write invasive laws that remove a person's freedom to choose whether they'll give an anatomical gift or not, why not simply tighten up the laws we already have, giving more weight to the deceased person's wishes (since it is his body) and less to the family?

Isn't what's happening now a bit like the surviving family members rewriting a will?

"We know uncle Robert wanted to leave his house to cousin Willy, but we don't want him to."

I really don't understand why organ donation (or whole body donation) should be any different.

 
At Wednesday, January 25, 2006 9:50:00 PM, Blogger Maurice Bernstein, M.D. said...

Moof, I have presented this topic to the bioethics listserv to which I subscribe and the consensus of the ethicists there (which includes physician-ethicists)is that families "upstaging" the desires of their now deceased relative is not at all uncommon and the organ procurement organizations abide with the families.
And what is unsettling about this is that the decision of the family is usually made at a time of great and perhaps unexpected grief whereas the decision of the deceased was most likely made at a time of comfort and reflection.

When you write "it is his body", well..I am not so sure, since after death usually the family, if they are present, and not the state who have considerable control over how the body is disposed. As is suggested in the Virtual Mentor article, two different views of the nature of the donor card could be made: 1) The card is analogous to wills and as a will to be honored as a directive of the deceased. 2) The card could be interpreted as a "promise to donate" and in their responsibility to dispose of the body, the family would also have the "power to fulfill or not fulfill the "promise". I understand that most laws look at the first interpretation of the card..as equivalent to a will. What is needed is clear, definitive laws to which the public and the procurement professionals are educated about and then means taken to see that the laws are followed.

Moof, when this is settled, then will come the issue of the illegal disposal of body parts for financial gain of others. You would think there should be some human dignity associated with death but.. where is it? ..Maurice.

 
At Thursday, January 26, 2006 11:14:00 AM, Anonymous Moof said...

You would think there should be some human dignity associated with death but.. where is it?

dig·ni·ty n.
. 1. [...]
. 3.
. . . a. Poise and self-respect.

from Dictionary.com

At the risk of sounding cynical: I beleive that the dignity in death is that death is. The deceased person is no longer troubled by the scrabbling of those who are left behind, each one jockeying his own circumstances against whatever cost in order to ease his often uncomfortable journey through life.

The dignity is whatever, we, the living, are willing to accord it, and is limited to our meager understanding - since the dead are themselves experiencing a "dignity" which is beyond our means to affect.

I believe that with our ever increasing societal upheavals, dignity is going to go the way of many other fine concepts, like "morality," "responsibility," "respect," "common sense" ...

Dr. Bernstein, yes, there should be dignity associated with death, but today, since there's very little of it associate with life ... what can we expect?

.

 
At Thursday, January 26, 2006 3:00:00 PM, Blogger Alyssa said...

This is yet another example of a lack of communication in families. Many times I have heard family members say "He said he wanted WHAT?!?!" after a family members' death. At the loss of a family member, it is terrifying for someone who has not considered organ donation (or who thinks it sounds abhorrent)to believe that their loved one actually wanted that. It's especially scary since the family approached the instant the person is dead.

Is it that health care professionals would rather passify a grieving family than stick up for the wishes of the dead?

Why are we even asking the family if it's OK? Even though the body technically becomes the "property" of the family, shouldn't the wishes of that person be honored?

 
At Thursday, January 26, 2006 9:40:00 PM, Blogger Maurice Bernstein, M.D. said...

Alyssa, I agree. The legal and ethical rules are that the directive of the now deceased person should be honored. Now we should see that the rules are followed. ..Maurice.

 
At Sunday, June 25, 2006 2:02:00 PM, Anonymous Beckys dad said...

The organ donation procedure leaves a lot to be desired. I remember the time that my daughter's purse had been stolen and she was able to stop her credit cards and change the checking account number so that her only real loss was a few dollars in her purse, some personal property and her drivers license.
I took her to the local DMV and waited while she went in for a replacment drivers license. When she came out, she told me that she had checked the organ donor box and said that she had been encouraged to tell a family member of her wishes. I was charged with that responsibility. It was certainly sobering, but I tried to pass it off by suggesting that she would outlive me by a long time.
Less than a year later, she was killed by a drunk driver and a representative of the hospital was asking for permission. She hadn't mentioned organ donation to anyone else and I hadn't really thought about it since that day in the parking lot of the DMV.
Of course we had to honor her wishes.
The young mother who received my daughter's heart had suffered complications during childbirth that would have been fatal. The gentleman who received a kidney and pancreas had been a diabetic and had lost his vision and the feeling in his feet and legs. None of the other recipients even wanted to acknowledge the gift that my daughter had given.
Perhaps it's a little something wrong with me, since I can't help but feel that a little emotional and physical screening should have taken place during the selection of who was to receive something this important.
The young mother was given an opportunity to live and get to know her daughter. Instead, she abandoned her husband and child and seemed to seek out "low-lifes" and had to ultimately leave the state to get away from one of her more abusive boyfriends. She stopped taking her anti-rejection medication and died a couple years ago. I feel that my daughters gift was wasted on her.
The man who received a kidney and her pancreas had suffered such damage from the diabetes that he is unable to do much. He can't work and doesn't even get out of the house. His wife has divorced him and he sits at home with his mother, basically waiting to die.
Doesn't it make more sense to do a little emotional assessment while they're checking for physical compatibility?
I'm disappointed that the others who benefited have refused to acknowledge my daughter, although I do understand that some people may feel guilt that they benefitted from such a tragedy.
I seriously question if I would say yes next time. But then, I don't think anyone in my family will be checking the box either.

 
At Sunday, June 25, 2006 6:32:00 PM, Blogger Maurice Bernstein, M.D. said...

Beckys Dad, I can eaily understand your frustration about the outcome of your daughter's donation. All I can say is that is life. Possibly even the best pre-transplant screening of the recipient would not eliminate unsatifactory outcomes. Since there is no monetary or other such transaction associated with the transfer of organs, the recipient might feel there is still some obligation which is still unsettled with the donor family or as, perhaps you feel, there must be some obligation that the recipient should carry out to make the transplant worthy. These arguments form the the basis of ethical considerations that perhaps there never should be any identification or communication between the family of the donor and the recipient. Obviously, this option may not be satisfactory as you disclose your disappointment regarding the others who apparently benefited and yet you obtained no acknowledgment of the donation. Organ procurement and transplant is still in many ways full of complications and unsatisfactory and often gives only temporary benefit and in some countries stretches ethical and legal norms. Hopefully, stem cell research or other approaches will provide organs without the burdens associated with the current approach. ..Maurice.

 
At Sunday, July 02, 2006 7:44:00 AM, Anonymous Anonymous said...

Maurice; thank you for your response. While intellectually accurate and in line with current political and social standards, there doesn't seem to be much of an emotionally acceptable component to anything that I've read or been told by anyone involved in the process. There have been some very kind and empathetic social workers involved with the hospital where my daughter died, and they have, I'm sure, followed the guidebook regarding all of my questions and concerns. The problem is, there just doesn't seem to be much that can be said or done that makes any of it seem worthwhile.
Yes, an emotional as well as physical screening should take place, but I don't know what could be done to encourage the recipient to demonstrate worthiness, such a requirement sounds like moral judgment. I honestly couldn't request something like that since my standards would be far different than those of someone else, but I might want some ongoing mental therapy for someone who feels the guilt from receiving such a gift. I am convinced that the young mother's irrational behavior was the result of her feelings of guilt. She needed to be able to deal with that at least as much as she needed her anti-rejection medication. She emotionally rejected her transplant long before she quit taking her anti-rejection medication.
The man who received her kidney and pancreas also needed emotional support, as did his wife. I don't know if they would have been able to stay together under ideal circumstances, but his guilt and perhaps her blame certainly went a long way toward the destruction of their relationship.
We are far more than a collection of organs, which can be replaced at will.
Beckys Dad

 
At Saturday, February 14, 2009 9:21:00 PM, Anonymous Anonymous said...

If I understand what I learned tonite..over 30 states now have a mandatory refusal of donation law whereby you must opt out or it is considered that you want to donate.
Personaly I find such implied consent to be odius at the least.
The issue of donation or recieving a transplant is held differently by different members of my family... some are for it and would accept an organ as well...others are against it..and each of them has said they do not want a transplant ( I am not in favor of organ transplants for myself and would not ask for one) If it were not that the state I am in is one that requires a signed refusl form or you are considered a donor, I would leave it up to family members and conditions at my death...but the implied consent irritates me enough that I am going to sign the refusal form. In my state it can not be over riden and must be honored I am told....
leemac

 
At Sunday, February 15, 2009 12:53:00 AM, Anonymous Anonymous said...

I should explain that having to opt out of being a donor or you are considered to be one is the same as if I had to opt out at the police station so that burglars /robbers wouldn't steal from me otherwise it would be ok for them to rob me. You do not take what is not yours without asking and getting permission.
leemac

 

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