I really struggled with this article.
I’m thankful you posted it. I do
Not believe alcoholics should be recipients.
I think it’s robbing another recipient
Of a chance at life. I do not believe
The Dr.'s are trying to play God.
I think they are making the right decision
For their patients. This was a really tough
Article to read.
It made me angry.
Here is an interesting article on whether alcoholism is a disease or not:
http://www2.potsdam.edu/alcohol/Controversies/Is-Alcoholism-a-Disease.html#.VMx93cY05bs
Perhaps a PSC group could gain intervenor status in Debra Selkirk's constitutional challenge. She refers to alcoholism as a disability, rather than a disease. She doesn't believe doctors should make a moral judgement of alcoholics in arriving at a decision on who to transplant.
On the one hand, if you look to their future after transplant, many alcoholics do give up drinking. But if you look at two patients vying for the same liver, one having PSC through no fault of his own, ostensibly, and one being an alcoholic who abused his liver for many years; it would seem to be more fair to give the liver to the person with PSC.
At Stanford, when my mom and I attended the required pre-transplant classes, they did not differentiate between an alcoholic needing a liver and someone with PSC. The only comment they made was that an alcoholic had to sign a contract stating that they were giving up alcohol and be available any time for random tests for that. (I have no idea what those tests could be for alcohol.) If alcohol was found in their system, they were off the Stanford list immediately.
Like Lara,I found it very hard to accept that someone who had trashed their liver might get one ahead of someone who had PSC through no fault of their own. A lot of people in the class felt the same way, because all of the support family wanted the available livers for our loved ones who had PSC, PBC, etc.
This has been an interesting series of articles. Thanks for posting Stephen.
As an addictions counsellor and transplant recipient I have struggled here as well.
Medically, I can not imagine going through alcohol withdrawal (and what that alone does to the body) and going through a liver transplant. The toxic load on the ‘new liver’ must be a huge factor for rejection let alone someone who goes home and celebrates by having a few drinks.
Ethically, if stopping alcohol may be enough to kick start the liver to regenerate on its own, this should be tried first for at least 6 months. Also, if a patient cannot demonstrate an ability to follow abstaining from alcohol, then this is likely a good prediction of how They may not follow the strict regime of medications following surgery.
Another issue not talked about, but I have seen other articles is donors voicing that if they thought an alcoholic would get their organs, they would not donate. I personally think this is judgemental, but it is still a real issue.
Lastly, the another issue not talked about is finances and whether or not those with money jump the line. Short answer is yes they do. I am researching this more for my website blog, but the ethics around Steve Jobs being on more than one transplant list in the USA because he could afford it, is the best example. I’ll post more about this when I get it together.
Cheers (kidding)
Ruby
Yes, ultimately we need a better organ donor system, perhaps an opt-out system. I've signed my health care card, allowing my organs to be used if I died (but not my liver, which I'll save for old time's sake ;)), but I'm very concerned that I might be regarded as dead before I'm really dead. I'm sure that's why a lot of people don't sign their cards.
Another interesting topic is how badly one wants to live. I think this would vary amongst people needing a transplant.
Hi Lara,
I used to work at the CA DMV and was honored to represent Donate Life CA, when the DMV and Donate Life teamed up for their new program. When I heard people being asked by employees of the DMV if they wanted to be an organ donor, many people did show concern about being declared dead if you were really not dead. Donate Life clearly tells DMV employees that there is a large team of independent doctors in whatever hospital you are in, that must certify unanimously that you are deceased or brain dead. The problem in CA is that DMV employees are not really allowed to encourage the customer to sign the form or explain any of the Donate Life protocols. The customer must know they want to be an organ donor and donor knowledge seemed to have a higher amount of misinformation in certain cultures vs. others. Since Silicon Valley is a very diverse ethnic area, this leads to a big gap in donors for bone marrow, etc., where ethnicity is important to help with a match.
At Stanford, part of the transplant evaluation is going through a very thorough review with a psychiatrist. It is hard to think about those folks that do not want to try to live. It makes me think about how we can help them. Hopefully their doctors help identify their depression and refer them for CBT therapy and close monitoring.
I hope that you had a good weekend,
Jill
I don't think that a person is necessarily depressed if they don't choose to have a liver transplant. An operation of that magnitude would probably cause somebody to prepare for the possibility of death, and once all that preparation is done, s/he might not see it as such a frightening prospect anymore.
When you think of Robin Williams for instance, the sadness lies in the fact that he took his own life. But say, for instance, he was waiting on the transplant list, and decided that he really wouldn't mind "taking the earlier bus," so to speak, and decided to forgo the operation. This is far less culpable in my opinion.
I will probably go ahead with receiving the assistance of modern medicine, but I have thought many times that my life has become a certain box of activities that are hard to change. My personality, interests, beliefs, abilities, and important people around me, have all combined to give me a certain life. Perhaps because I'm worried about my health, it is hard to imagine a better life, or a different life. I enjoy my life, but to a certain degree, it is very much a theme and variations. Would an extra ten years make much difference, when you consider the last 19 years have pretty much been the same? I don't seem to change much.
However, since November, I have developed a sudden interest in football, and so enjoyed the Superbowl immensely this weekend.
You have read my comments incorrectly. Please read them again to get my meaning. I am 100% against euthanasia or suicide of any sort.
However, there is no moral obligation to undertake a serious operation such as a liver transplant.
My condition is good and nothing like yours, which I believe is far worse than mine. I'm just pointing out that not everybody necessarily wants to undergo a risky operation.
Lara said:
You have read my comments incorrectly. Please read them again to get my meaning. I am 100% against euthanasia or suicide of any sort.
However, there is no moral obligation to undertake a serious operation such as a liver transplant.
My condition is good and nothing like yours, which I believe is far worse than mine. I'm just pointing out that not everybody necessarily wants to undergo a risky operation.
Hi Lara,I totally agree with you that deciding not to have a transplant is not a sign of depression in everyone. It is such a personal choice and has many factors involved in it regarding survival chance, financial, emotional support and personal beliefs.
I do know that having an disease like PSC is a day to day struggle. What makes one person content and optimistic may not be the same for the other PSC patient. It is very hard to live with a disease in such a major organ, that affects so many things in your life. There is a higher rate of depression in folks with auto immune diseases, so the professionals look carefully at that.
My mom had PSC for about 24 or 26 years. There were some days she was up and positive, and some where she did not want to get out of bed. It came down to wanting to live, to see her grandkids graduate high school, celebrate more holidays with family and friends, and enjoy her hummingbirds and flowers. We talked openly about the transplant process as she was undergoing her evaluation at Stanford. She shared her fears, hopes and tears with me and I shared mine with her. Even though she did not get a transplant as she was denied for age after a committee vote, she still wanted to see what her future would bring.She was a serious fighter, but that is what she determined was right for her.
I do not know your life circumstance, if you have family or kids, your age, etc. I do know that you sound very intelligent and aware, and that whatever choices you make regarding transplants or your health will be the right one for you.
I am impressed that you understand football. Just when I think I get it, the announcer says, they did xyz play, and I say, What is that? Some of the terms sound like a foreign language to me. Other times I understand what I am watching. It was a good superbowl, but not a very good last play by the SeaHawks. Why did they pass and not run the ball on the half yard line?
I hope that you have a good week. Thanks for sharing your thoughts, they are always well thought out.
Jill
Very interesting article. I struggle with the thought of somebody receiving a liver over my husband who has done the damage to themselves. My husband did not ask for this disease & there was nothing he did to cause it.