Man with ALS wants to die by donating organs

[ElizaAvalon]

I, too, have had a loved one die of this horrible, horrible disease.

It is my understanding that the problem with ALS is not the organs themselves but the messages that the brain sends to the muscles slowly die off.

That said, if transplant doctors NORMALLY accept the organs of deceased ALS patients, the argument is not about whether or not they should take Mr. Phebus'. The argument is about whether or not Mr. Phebus has a right to decide how he dies.

It's an impossible situation. The ALS patient most likely cannot end his/her life when he/she is ready because he/she can no longer physically do anything about it.

 

[drip~drop]

Weird. It allowed me to do votes.
My actual vote is #2.

 

[Steely Dan]

I think if somebody has a terminal illness that will end slowly and painfully they should be able to decide when and how they die.

 

[rossva]

You bring up an interesting question. Do transplant doctors accept organs from non suicide ALS patients? Any transplant doctors out there?

I, too, have had a loved one die of this horrible, horrible disease.

It is my understanding that the problem with ALS is not the organs themselves but the messages that the brain sends to the muscles slowly die off.

That said, if transplant doctors NORMALLY accept the organs of deceased ALS patients, the argument is not about whether or not they should take Mr. Phebus'. The argument is about whether or not Mr. Phebus has a right to decide how he dies.

It's an impossible situation. The ALS patient most likely cannot end his/her life when he/she is ready because he/she can no longer physically do anything about it.

 

[tlcya]

{{{{{tiredofthis}}}}} I'm sorry you had to see your father face that. It is horrible.

 

[In da Middle]

IF this were allowed to happen (which I believe it will not be allowed), then the recipient should get full disclosure of the fact that the organ donor had ALS. The recipient that is dying now might be grateful to get some extra time on earth. IF and only IF everything was laid out in front of them can decisions be made for what is best for them. I can understand the ALS victim wanting to end his life with dignity and if I were in dire need of a transplant I might be eternally grateful for this persons decision to give me some extra time with my family and friends and get to do at least some of the things that my failing organ has not let me do.

 

[mom2six]

IF this were allowed to happen (which I believe it will not be allowed), then the recipient should get full disclosure of the fact that the organ donor had ALS. The recipient that is dying now might be grateful to get some extra time on earth. IF and only IF everything was laid out in front of them can decisions be made for what is best for them. I can understand the ALS victim wanting to end his life with dignity and if I were in dire need of a transplant I might be eternally grateful for this persons decision to give me some extra time with my family and friends and get to do at least some of the things that my failing organ has not let me do.

I don't believe a hospital's legal counsel would ever allow that to be done, because it would easily lead to a malpractice suit if the person developed ALS. Transplant guidelines are very strict and lots of people do not meet the necessary requirements for donors.

 

[ZsaZsa]

Since the cause of this disease is essentially unknown I do not think most Organ Procurement organizations would take organs or tissue for a living donor.
What can be done is to donate the brain and spinal cord after death for research into the cause and a cure, so others may in the future not have to face this cruel disease.

 

[mom2six]

Since the cause of this disease is essentially unknown I do not think most Organ Procurement organizations would take organs or tissue for a living donor.
What can be done is to donate the brain and spinal cord after death for research into the cause and a cure, so others may in the future not have to face this cruel disease.

I think that's a brilliant idea.

 

[BeavisMom62]

What a horrible conundrum! And a horrible disease. I hate this disease more than any other. I am a neurologic assistant and thankfully, most of our patients are car accident victims. But one afternoon last week, our patients consisted of Alzheimer's disease, cerebral palsy, stroke, Parkinson's disease, multiple sclerosis, migraine, peripheral neuropathy and yes, ALS! IIRC, most people with ALS die within 3 years of being diagnosed. This one particular patient, our only patient with ALS, we've been seeing for about 7 or 8 years! My doctor/boss was the one to diagnose him. When we first saw him, he was as normal as normal could be. Smiling and laughing all the time. We didn't see him often, which is probably worse, because you can see the deterioration faster. But the last time we saw him was 3 years ago, so when I saw him on the schedule, I was petrified. I didn't want to see the man that I knew he had become. Sadly, he obviously couldn't walk, talk, move, eat by himself. His wife, who married him AFTER he was diagnosed (I can't honestly say that I could have done that, knowing what the future inevitably holds for them both) brought him in in a wheelchair almost like a baby carriage. I never would have recognized him as the smiling laughing man I met so many years ago. But, what was odd, considering he couldn't speak or even move his hands at all, they could communicate! And it wasn't "blink once for yes and twice for no" either. We were discussing his medications and she forgot a few and would ask him and he would do something with his face and she would say "oh, yes, Ken also says he is taking xxxxxx medicine". And she would ask other questions, not yes and no questions and he would answer with his face! It was really amazing. Sweet and sad and amazing!

I'm sorta highjacking here, but does anyone know if there is some kind of language, you know like sign language for deaf people, that people can do with their faces? I've never heard of it, but I sure witnessed it. I was in awe, I really was.

Back to the subject. I firmly believe in assisted suicide, but I don't know if donating organs, that probably won't and can't be used by others, is the way to go. It is just a horrible terrible disease. And I am sorry to all of you who have lost loved ones to this disease. I can't even imagine going through that. My sympathies.

 

[rossva]

I will try amd locate my fathers drivers license and see if he was listed as an organ donor or not.

Since the cause of this disease is essentially unknown I do not think most Organ Procurement organizations would take organs or tissue for a living donor.
What can be done is to donate the brain and spinal cord after death for research into the cause and a cure, so others may in the future not have to face this cruel disease.

 

[tiredofthis]

{{{{{tiredofthis}}}}} I'm sorry you had to see your father face that. It is horrible.

Thank you {{{tlcox}}} I'm sorry you lost your uncle. I often pray for a cure to this dreadful disease because I wouldn't wish it on my worst enemy.

 

[lost indie]

Absolutely not! Not only is it unethical and may lead to abuse ( which I believe happened in the Terri Schiavo case), but also he is not a healthy donor!!! He has ALS, maybe he is passing that on by transmission through his organ tissue. I wouldn't want to be his recipient or hasten his death, even though he has a horrible disease!!!:snooty:

I respectfully disagree about Terri Schiavo. Unless you were her you wouldn't know.

My dear grandmother made her wishes VERY clear. She never wanted life support. She put it in writing and made it legal. My dad was her only child and he had my brother and I for support....her blood kin. We were her stone wall of support in her decision.

She had a stroke when she was 88. We all showed the doctors the paperwork and voiced our STRONG opinion that no life support be used.

They put a feeding tube down her nose and sent her on a nursing home that is near us and a familiar place to us. We made sure the nursing home knew her and our wishes as well. Grandma was in a coma-like state.

She pulled the feeding tube out. Dad got a call from our trusted nursing home that they had sent her to the hospital to get it placed back in.

A few days later she did it again. Again they sent her to the hospital before calling dad.

The third time she did it a nursing aid called and asked if we wanted her sent to the hospital. We were not aware it was a choice. We were not aware it was life support.

Dad went ballistic! After all this time we were never told that. Grandma was so adamant about life support. We spent a horrible night crying and discussing. Dad was feeling so guilty about not knowing about the feeding tube being life support. So guilty for keeping her alive because of it. So guilty about "starving" her. She had made it so clear to us....and we felt we failed her. We made a three way decision to keep the tube out. The staff would attempt to feed her orally. It was a nutrient that was the honey-like in consistency. Her swallowing wasn't good.

It took a little over a week before she died. We all still feel guilt over this. We didn't know. We so wanted to do right by her.

Sometimes love means letting go. We did not want grandma to go at all. We never wanted her to suffer. She had lost a three year old son in a horrible farm accident and she had lost her husband. She had strong faith and wanted to be reunited with them.

She never wanted to be the one prone on a bed waiting for someone to wipe her butt. She was a private person. I am too. I know how she felt.

 

[mom2six]

It took a little over a week before she died. We all still feel guilt over this. We didn't know. We so wanted to do right by her.

Please don't feel guilty about this! Not all people equate a feeding tube with life support. If she was otherwise breathing on her own, etc., then there is a variety of opinion about the definition of "life support." I'm so sorry for your pain and your loss. Please allow yourself permission to have erred on the side of medical advise.

 

[Hope4Lost]

I would not want organs donated by a person who has an illness, of which the cause or origin thereof can not be established. Way too risky.

 

[SunnieRN]

First to all who have lost family members or friends, from terminal illness, we all know the devastation it brings, not only to the patient, but to the family, that is helpless to stop the progression of the disease.

There are many ideas of life support and that is why people should be asked specifically what they do and do not want.

You can be as detailed as you choose to be. Do you want medications if your heart stops, but no compressions or intubation? Do you want Nothing done no matter what? Do you want comfort measures only? These could include antibiotics, tube feeding, iv fluids, etc.

The more specific you are, as to your wishes, the more likely these wishes will be followed! By being specific, it also takes away the guilt, guess work and questions that family members will have.

Having a medical power of attorney or a living will is the greatest gift you could ever give yourself, if you have specific wishes.

There is never a right or wrong answer to what your wishes are. Just make sure they are written down and witnessed by a non family member who has no financial gain from your estate.

I lost my Mom to cancer three years ago. I was blessed enough to be there when she learned her diagnosis. The Doctor told her she would live 1 to two years longer. I refused to take away my Moms hope, but knew I would be very lucky if she lived even 1 month longer. I got a form, she specifically told me everything she wanted, what medical treatments she would allow and what she did not want,

The doctor asked what she needed/wanted, I insisted on hospice for the treatment options and durable medical equipment available.

My Mom died at home, 6 days following her diagnosis. Every one of her wishes were followed. We had no questions about her wishes for treatment, a memorial service, burial. It made an incredibly stressful, difficult situation a little bit easier.

One more thought. Donor regulations are VERY strict. A person can be disqualified for a LOT of reasons, mild or severe, also due to the treatments they have had prior to death. I honestly do not believe they would transplant organs from an ALS patient as there are still too many unknowns to the disease process.

Sorry for the long winded reply, but we should all be prepared for our future health issues.