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Active member
Aug 6, 2009
Bergen County
Some months ago someone posted a link to an article about "100 simple things" worth living for. Below is a link to a lengthier story of his life (Martin Welsh M.D.) with ALS. The Sacramento Bee, Friday, November 13, 2009, “A dying doctor savors simple joys and crosses off his final '100 things' in the Health, Fitness & Medical News section.

A dying doctor savors simple joys and crosses off his final '100 things' - Health, Fitness & Medical News -

At the time of the first article post, some of the negative replies (on the forum) stated that this man was “giving up” early. Some accused him of being a hypocrite. After reading this article I have a better picture of him. His ideas are worth considering.

I can't help but respect and even admire those of you who regularly post on the forum who have extended their life using whatever measures possible. But this man is certainly not an advocate of physician assisted suicide.

Doctor Welsh had a full productive life. Looking at the slideshow in the article you can see he has already taken many measures to enhance his life, including home accessibility, use of a motorized wc and a computer for speaking. These are lengths I don’t even know I’m capable of making.

The amount of time he had knowing he had ALS (five years) is probably something we all wish we had. End of life issues had increasingly preoccupied my thoughts and influenced my every day decisions and actions. Like him it's because of my family and their future that I want to make decisions now. Yesterday I liquidated two accounts to spend down our assets for Medicaid acceptance.

My wife and I have been living with this issue as if it would go away. The more I read about ALS and observe my own decline the stark awareness of how short a time I might have is apparent.

Some of the more activist advocates on the ALS forum have forced me to seriously ponder the acceptance of their choices to extend life. Initially I dismissed their choices because I too was a health professional and had what I now realize is a rigid preconceived notion about “end of life”, if It were only that easy.

Finally read the four pages of comments that follow the article

A dying doctor savors simple joys and crosses off his final '100 things' - Health, Fitness & Medical News -
I reluctantly approved this post. I have a different opinion on the sanctity of life than most people. It is always worth living and with the technology available to us there is no reason to give up.
I know others will disagree and that is their right.
Joel, You are a good man!

Thank you for your candid insight.

I certainly respect everyone's decision in this area. For some people the loss of functionality means losing who they are. For others, just being able to stay alive and be part of their loved ones' lives is enough.

But I do disagree with one aspect of the article. It seemed to be implying that there is a problem with people too often being kept alive artificially by modern medicine, without regard to quality of life. One quote from the article: "He hopes that by telling his story, he can help shift medicine's focus from keeping people alive at all costs to giving them a better quality of life at the end."

Maybe that is a problem in some areas, but from what I have read, in ALS if anything the situation is the opposite. The great majority of PALS are not encouraged to extend their lives. If anything they are given a message that there is no point in going on, and that once the breathing starts to go they might as well let nature take its course. Statistically, fewer than 10% of PALS go onto ventilators, and a much lower percentage do it the way Joel did, as part of a planned transition.

So I don't think we are particularly faced with the problem discussed in the article, or that the doctor's decision not to use life extending measures is particularly unusual or noteworthy. It is more the rule than the exception. I don't mean in any way to demean his decision or to say that he does not deserve attention; every family dealing with ALS has its own story and most of them are dramatic and newsworthy for a public that is still largely ignorant about the disease. But I wish the article had done more to make it clear that ALS patients are if anything being hurried out death's door rather than being kept alive past their time through extraordinary measures.
You know, just because this fellow has the words M.D. after his name does not make him any more wise or special than any of the rest of us. Sure he is going through this, as all of us here are, but his views on what is appropriate or not for extending lives are no more valid than anyone else's. He is not interested in getting a peg tube because it means that he won't be able to eat food anymore, well boo hoo, join the club! As a person with a peg tube who is more or less still auto-mobile I would not want him advising me and I do not share his outlook.

Maybe I am being insensitive here but I find that people who have always been the overachievers, who have always been the center of attention, who have always been able to do everthing that they wanted to do are those who are the least likely to be able to cope when something like this hits. We all have to change throughout our lives and give up things, that is life and I am going to keep mine going for as long as I can no matter what I have to do.
I can see the article hit a sensitive note.

But I don't remember reading in it anything about hurrying people out the door, in fact I don't remember anything about what other people should do. I think that response cops an unobjective attitude.

A trip down many long term hallways with residents being fed via a g-tube or with trachs will absolutely find in 95% of the cases, they had no decision in the matter and are not capable of deciding now. Many I've seen are like that because of ; progressive degenerative desease (Alzheimers) ,accidents, drug overdoses, or suicide attempts. They that remain physcially alive because it was some EMT's duty to resuscitate them.

And oh thanks for letting the post past muster. I didn't know there was a moral code or law that posters with ALS must meet.

As ya'll have frequently said these are personal decisions and there are always two sides of a coin.

Again I'll repeat (because the forum seems clearly to have an ideological bent), I have nothing but respect bodering on awe for those of you who can continue living fullfilling lives seemingly filled with purpose and able to find happiness and provide others with some comforting answers to a horrible desease.
ALS is different than most other degenerative diseases or accidents, etc. as our minds are still in tact. We can make our own decisions.

Being a doctor he is in a position to negatively influence people. I feel sorry for him thinking life is not worth living.

Yes, everyone has the right to their own thoughts and opinions on this issue and there are many complex factors that influence each persons decision and I respect that. He is likely reacting from the advice he has given numerous patients and now finds himself in a situation where he does not want to appear the hypocrite.

I know, I am speculating about that but I bet I am right based on many years of dealing with medical people. I am extremely thankful I have now found a group who are open and free thinkers.

Some people just can't accept a less than active life while others can adjust and as Barry said, life is all about change and adaptation to new circumstances. That need to be respected, both sides.
Reading through old messages I ran across discussion of this 60 minutes story that is both inspirational and relevant:

Harnessing The Power Of The Brain - 60 Minutes - CBS News

(The transcript of the story is on that page, plus a link to the video. It took me a couple of reloads to get the video to run but it finally worked.)

It's an interesting report about the use of computers to interpret brain waves and help ALS patients to communicate. But what struck me is the story of Scott Mackler, a brain researcher ironically, who developed ALS. He was very fit and active and could not see himself living on life support systems, much like Dr. Welsh in the article above. Mackler even recorded a video for his two sons to be able to watch in later years, presumably after their father had died. They show some of it in the 60 Minutes report and it is quite moving.

But then we see Scott several years later, here he is alive and perhaps not well, but still able to communicate despite being "locked in" and only able to move his eyes. He uses an experimental brain interface which lets him work on the computer and use a voice synthesizer. Not only is he still there for his wife and children, still able to communicate with them, but he also still goes to work every day and runs his research lab, writing scientific papers and making an active contribution to the world. This was a man who only a few years earlier said he did not want to live in that condition and figured that his life was at an end.

Now again I recognize that everyone has to make their own decision on this issue as on everything else involving ALS (and life for that matter). But I thought this was an interesting case where someone's idea of what would be necessary for life to be worth living changed and evolved as he moved forward.
A little healthy debate never hurt anyone. At least it's not supposed to. Everyone is entitled to an opinion as long as nobody gets carried away.

Bythesea, for some reason, this topic always touches off a firestorm. The Patients Like Me forum degenerated into a cat fight on this topic, with very nasty name calling and personal attacks.

There is no litmus test on this forum for points of view, but hopefully our moderators will keep things respectful of all opinions.

I'm pasting in some thoughts I posted on the PLM thread, then I'm staying out of it! (I'm in the no-trache for me school, for entirely personal reasons.) I appreciate your posting the article, Bythesea, as this issue is of utmost importance to all PALS.

This should be a normal decision-making process for all of us, but somehow we have all been made to feel defensive about our choices.

It would be nice if we could all agree to the following:

People who vent are not selfish, nor greedy, nor draining away medical time and resources that people with better prognoses should have, nor (probably) a burden to others, nor inert vegetables, nor so afraid of dying they will endure any torture to hang on. They are patients with a serious disease who have evaluated their resources, consulted with their families and consciences, and made a rational medical choice about their treatment.

People who do not vent are not suicidal, nor cowards, nor "giving up on life," nor irrationally anti-vent crusaders, etc. They are patients with a serious disease who have evaluated their resources, consulted with their families and consciences, and made a rational medical choice about their treatment.

I don't understand the need to convince others of the rightness of your own personal decision. I suspect this comes from the lack of support from the medical community. Saying, "I respect your right to make your own decision, but you're a douchebag if you don't do what I do," is not convincing.

Every decision on this subject is personal and is the "right" decision for that patient. Let's share information, not judgments.
Well said Beth, as usual.
Thank you for a positive reply. I didn't post the article because I do not believe in fulling extending life forsomeone with ALS.

In fact just the opposite. Before reading this article the other day I was quite preoccupied with the hope of living longer with a Peg if necessary and even a vent.

I quite had reached the point of visualing life using augmentative means.

However this article (which certainly was not written as polemic against anyone sent) me in different directions.

No easy answers!
Everyone is entitled to their own opinion. I agree (as long as I dont piss off AL) ;)

So Beth, I have not seen a good cat fight in many years. Where was it at ?


The article I posted...

A dying doctor savors simple joys and crosses off his final '100 things' - Health, Fitness & Medical News -

wasn't posted to piss off anyone. But now that it has elicited such response I guess to really honest, I must have some hidden agenda.

No that's not true.

It just that I have been preoccupied thinking about all this.

It's sorta like the dark and stormy skies we have in Jersey right now
There is nothing magical about the 5-year mark in ALS. It's like some people think you live 5 years with the disease and you die the next day. The 2-5 years thing is just an average, tha't all it is. You can prolong your life indefinitely with this disease and, additionally, there WILL BE significant treatments forthcoming in the new decade.
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