Martin Welsh M.D.

[bythesea]

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 - sacbee.com (http://www.sacbee.com/296/story/2183064.html?mi_rss=Health,%20Fitness%20&%20Medical%20News)

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 - sacbee.com (http://www.sacbee.com/296/story/2183064.html?mi_rss=Health,%20Fitness%20&%20Medical%20News)

[joelc]

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.

[Zaphoon]

Joel, You are a good man!

Thank you for your candid insight.

Zaphoon

[halfin]

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.

[BarryG]

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.

[bythesea]

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.

[joelc]

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.

[halfin]

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 (http://www.cbsnews.com/stories/2008/10/31/60minutes/main4560940.shtml)

(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.

[Al]

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.

AL.

[BethU]

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.

[joelc]

Well said Beth, as usual.

[bythesea]

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!

[GlenBrittle]

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 ?


*snicker*

Glen

[bythesea]

The article I posted...

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

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

[Big Mike]

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.

[BarryG]

bythesea, I know that you dont have an hidden agenda, you are just going through the same things as the rest of us (just as the doctor in the article is). We all have our own beliefs on the issues of feeding and breathing assistance and I am not trying or wanting to force mine on anyone but I would like to say that you should make up your own mind and not be influenced by the decisions that others (the doctor or me or anyone else here) have made.

I am not pissed off but it does bother me when people say "Oh, I am never going to go there or get that" because I have been there. When the PEG tube was first suggested to me I said "No Way" but since I got mine last February I have had a good life that I would not have had otherwise. Joel says the same about his trache and vent.

You are right, there are no easy answers but the decisions are yours to make for you. Don't let anyone decide for you.

Beth is right when she says we are here to support and not to judge each other. Thanks for posting the link.

Barry

[tdamess]

a lot of people change their minds when the time comes, from what they had believe all their life how they would want it to be...

[mare]

No previous knowledge, but perhaps would be pertinent to this discussion.

Previews on our TV station for an upcoming show- "Three Rivers" (CBS listing in my area)
Starring Mandy Potinka (SP?) as an ALS patient, who it seems chooses to go off vent,
Shows some discussions between drs. with opposing views.

I have never seen this series; just thought is might be of interest to some.
It will air this Sunday night, CBS network, at 9pm EST. Check local listings.

[bythesea]

How more pertinent can something be. Thanks for the info. I'm going to set the DVR right now.

May we alll be forever young

[tdamess]

just put it in record in case i forget... on previous post the reason i know this is because of my mom's stroke she never wanted to be depended on anyone and in talking with her doctor at a rehab he told me i've been here a lot of year's and all these patients in here have all felt that way .. and they struggle to survive in here.. and my mother lived 8 yrs after the 2nd stroke a year later.. all 8 yr's she never even got to sit up again just layed in bed so sad....but she wanted to live

[Zaphoon]

bythesea,

If I have it right, you do not have ALS but have been a caregiver to people who suffer similarly. Thank you for serving those who cannot serve themselves.

Other than that, I am forcing my fingers not to type things I may later regret.

Kim

[bythesea]

You're right about me having been a caretaker. Thank you for the compliment.

I have had another disabling neurological condition called Cervical Dystonia since 2002

However I have been symtomatic for ALS since March 2009 and have run the gamut of tests (except for the spinal thing).

Lately I am having trouble moving my legs and this seems to be noticeably worse almost every day. Although I don't have a diagnosis yet, if it walks like a duck...well you know what I mean

To all the regular contributors, thanks for your committment I read the forum several times every day.

Your warmth, humor, and wealth of accumulated knowledge help many people seeking advice amd emotional support with this God-forsaken disorder

[strikeout]

The name of the Three Rivers episode airing Sunday night is "The Luckiest Man". Sounds very interesting. Seems Mandy Patinkin's character is in a car crash and because of his ALS diagnoses he does not want any life-saving measures. Also nothing wrong with a little ALS exposure.

[Zaphoon]

I loved Mandy's acting in, "The Princess Bride". Great movie!

Zaphoon

[halfin]

I hear they are going to put in a subtle reference to that movie, in the TV show. Mandy's new lines:

Hello. My name is Inigo Montoya.
I have ALS.
I am prepared to die.

[Zaphoon]

I'll be laughing my butt off if I hear that line, Hal.

[lydia]

Just had to laugh-we quote The Princess Bride all the time here-:-D

[tdamess]

did not like the end of the show as i could never let my loved one who is not that bad yet go into that operating room never to talk to him again it would be over my dead body.and would an als patient be allowed to be an organ donner in the first place where as they dont really know what causes als ..

[mare]

It was more about transplants than ALS. Did not deal with ALS realistically. (but, hey, it's TV)

I agree with you, tdamess. Very controversial. And, I don't know if that is ethical or legal!

[bythesea]

Definitely made for tv.

Could a late middle-aged man give viable organs to people so young?

I thught it did touch upon (lightly) the complicated side of personal relationships between a caretaker/relative and their sick relative.

I never was as close to my mom as when she had alzheimers in the last seven years of her life.

My brother passed away several years ago after complications from his paraplegia (bed sores). His last years were miserable but he was indomitably independent for more than twenty-five years.

However he was such a fighter, never knew when to take advice or accept help.

For those last years he was always in crisis mode, hospital to nursing home to ER, over and over., a more realistic scenario than the smiley Mandy portrayed.

[Zaphoon]

I missed a bit before the ending of that "Three Rivers" episode. I came back in the show when they were wheeling Mandy into the operating room. It confused the heck out of me because as he was being wheeled in, all of these donor families were saying thank you. Shucks, I thought he was going in to be operated on so he could keep on going for a bit longer.

Did I miss something? How can you take organs out of a living, breathing human being without killing him? I'm guessing he was going to die on the operating table during his surgery and it was just a given. "Well, sir, we will operate on you to save/extend your life but its really going to kill you."

I'm usually this confused about most things.

Zaphoon

[joelc]

LOL.

He decided he did not want to live so made arrangements to terminate life support and donate his organs. The whole show was a total misrepresentation of ALS. I was disgusted with the inaccuracy. Trust Hollywood to not do their homework and screw things up.

[Zaphoon]

Thanks for clearing that up for me, Joel. I was going to watch the thing all over again but just couldn't bring myself to do it. I thought it might make sense to me the 2nd time around.

[halfin]

I thought they glossed over the fact that this was physician assisted suicide. The ethics panel said they were OK with it, but where were the hospital lawyers? It is still not legal in most states.

I did find the depiction of ALS interesting. They showed Mandy being suctioned, the first time I have ever seen this other than in Joel's video on his web site. To me it looked pretty realistic but like I said I don't have much to go on.

[Erica]

Another observation: It was interesting that all these transplant pts that happened to be there at the same time with ALS pt ended up being a perfect match for donor tissue.
Not a credible episode.