You have ALS. What will you do?

In My Humble Opinion
1

Last year I watched a documentary – Terry Pratchett: Choosing To Die. If you ever get a chance, I recommend watching it. The primary focus was on the final days – and in the end, the final minutes and seconds – in the life of one Peter Smedley, an elderly gent who was beginning to suffer from the symptoms of ALS.

The last portion of the program showed Smedley walking into a Dignitas clinic in Switzerland, drinking a lethal dose of Nembutal, saying goodbye to his wife, and then dying. But here’s the tricky part: for legal reasons the Dignitas staff could not assist him, so he had to do this while he was still physically able to lift the glass of Nembutal with his own arm and pour it into his mouth. This meant he had to sacrifice many months or possibly years during which he might have enjoyed a reasonable quality of life, to avoid requiring an illegal degree of assistance from someone else to end his life (or riding out the disease to its bitter end).

Imagine now that you, like Peter Smedley, are in the early stages of ALS. What decision would you make?

Ride out the disease to its bitter end. You likely have several months or possibly a year during which you might enjoy reasonable quality of life, but you will slowly deteriorate. Your mind will probably be unaffected by the disease, but you will experience months, possibly years, during which you will be unable to move or speak. In the end (probably about four years after diagnosis) you will require a feeding tube and external ventilation, and you will die of respiratory failure or pneumonia.

End your own life, without assistance, while you are still physically able to do so. You will avoid the torturous progression of the disease, but you will end up sacrificing perhaps a year in which your quality of life might have been acceptable, i.e. you would still have been able to talk and enjoy some degree of physical ability.

Turn to loved ones or friends for assistance in ending your life after your quality of life becomes unacceptably low. You will have avoided sacrificing any time with good quality of life, but taking this approach puts your loved ones or friends in legal jeopardy for the assistance they provide.

…Something else? What have you got?

2

I’d hope that the debate is running apace in the UK to the point where assisted suicide will become a reality soon enough.

My wife and I have already had this discussion after my friend died horrifically of ALS (motor-neurone disease as it is more commonly known in the UK) at the age of 42 and both my mother and father dying from rather merciless breast and pancreatic cancer.

We are comfortable with knowing that we would do whatever was needed after a pre-determined point. The legal ramifications of such action are negligible compared to the alleviation of my nearest and dearest suffering. For what we have planned I cannot imagine any court in the land jailing myself or my wife and any punishment less than that can be safely ignored.

3

My partner and I have already discussed this. We both agree that when the time comes, the best alternative would be for me to end my life without involving anyone else. He wants to be with me, but I refuse to involve him in any way.

I’m 68. Alzheimer’s runs strongly in my father’s family, and my cognitive faculty took a quantum downward jump only weeks ago. Nothing major, but still . . .

4

My aunt, my mother’s last surviving sibling, died from complications of ALS. She went relatively quickly due to pneumonia and did not have to ride it out till the end. It is a horrible way to go. But looking at it from middle age I can’t see any way I would take my life. If only to be able to see my kids for a little longer.

5

I think I’m supposed to pour a bucket of ice water over my head, or something?

6

Ride it out to the bitter end for that particular disease.

Alzheimer’s or Parkinson’s, etc: not so much.

7

Self administered heroin overdose. The hardest part would be scoring the heroin, but if I really looked, I could find it, I’m sure. If my husband is still alive, I know he would help me, but statistically he’ll probably die before me, so I have to plan to do it on my own.

I’ve held the hand of a person dying with ALS. Not going to die that way if I can avoid it.

More worrying to me in reality is my family history of Alzheimer’s. That one’s harder, because of the mental impairment. I don’t know if I’ll know when or how to end it before I and everyone around me is suffering.

8

The third option is untenable. As you said, your “loved ones or friends” can be (and will be, of detected) prosecuted for crimes that have very long prison sentences.

9

Yes, I think that’s the miracle cure.

10

We need robots or helper monkeys or something that could provide the lethal dose when indicated by the patient.

11

I just need a way that won’t leave a huge mess for my family to clean up.

12

I think video statements, or written clarifications would make a long prison sentence very, very unlikely (at least in the UK).

Here is an articlefrom 2011 that talks further on this.

In short. People in the situation we are discussing (and taking basic precautions to establish freely-given consent and desire to die) are not being prosecuted in the UK.

13

Yeah there’s no way I’m going to burden my family with that, especially if they might face prosecution.

And I honestly don’t know what I’d do. I hope I would be brave enough to find a painless way to kill myself. But the will to live is a powerful thing. And I have grandchildren who I am desperate to see grow up. So, I just don’t know.

14

I think I’d move back to Oregon at a certain point in the deterioration, and find a friendly physician there. This would allow me to depend on someone else to help me go when I am no longer able to do it by myself, without putting them at risk. This would give me a few more months or possibly a few years more of life that I might be able to enjoy to some degree.

So I guess this qualifies as “something else.”

15

I would have to ride it out, I can’t make unilateral decisions that affect my family and they would never agree to assisted suicide. It would insert more grief and heartache into their situation. And since they would be the ones to clean up after I am gone, they get to make the choice.
I had a close friend die of ALS about 10 years ago. Known him all my life, his sisters used to baby sit me when I was young, mom was the school cook, and after we got out of school we worked for awhile for the same company. Hell of a strong man, great athlete and all around nice guy.

One summer while clam digging he started having trouble with his foot. You know how when you are walking along and you bring your foot forward the toes naturally rise and you plant your foot and take another step? Well he was starting to drag his toes. The symptom is called foot drop, or drop foot and is a sign of neurological damage.

He lived in a house where the bottom floor was the shop/garage and the top floor was the living area, and as his condition deteriorated he was in danger of not being able to leave the house. So one weekend we had something like an old-fashioned “barn raising” party, and in 2 days me and a multitude of locals built a wheel chair ramp up to the second floor.

A ramp can only rise a certain rate per foot of travel so we had to wrap the ramp around the house and zig-zag it a few times to bring it up to the landing at the second story. This ramp raising was one of the finest community events I have every participated in.

And then he expired a few days before Thanksgiving that same year. Ability to breathe just gave out. They had to have the memorial service in the high school gymnasium.

The disease moved so swiftly. Six months or so from my foot is acting funny to, I am dead. People look at Stephen Hawking and say, “I wouldn’t want to live like that.” Well, you almost assuredly will not have to live like that, his case is unusual. You are probably going to die in less than 2 years, maybe 5 on the outside.

It is a sad thing, that dumping a bucket of ice water over your head, or giving a donation, is not going to cure. The interest will fade, the incident level is low, and the ice bucket thing is just at stupid fad.

16

Do it with help after waiting as long as possible, provided I feel reasonably secure that it’s not going to cause legal problems for loved ones. Otherwise do it myself sooner. I guess I’d have to research exactly what dying of ALS looks like and how long it lingers. If it’s significantly different than my current understanding I could theoretically ride it out to the end.

I am not going to wither away slowly while my friends and family have to watch and take care of me. Being on the other side of that was quite traumatizing.

17

Being trapped inside my own body is one of my nightmares. No way do I go gently into that good night.

18

I knew three people with MS, similar enough to ALS for me. Two of the the three were pretty nastily affected. I’d take myself out.

19

So I guess the bucket of ice water thing is right out. :stuck_out_tongue:

20

Cats. We all know they are more than willing. Just need a delivery system and a Fail-Safe to keep them from doing it at their first opportunity.

The Bastards.