Comments on: Knowledge before the Abyss

By: Doc

Doc — Tue, 10 Jun 2008 02:33:11 +0000

Sam,
I just found a link that describes what death is like for those who do learn about it from their doctor. Religion or spirituality aside, the data suggests it is a good thing.
Check it our here.

By: Earl

Earl — Sun, 08 Jun 2008 16:07:51 +0000

I think MOST people would want to know for themselves, but I can see where many would not want others to know about it. I understand the reasons, I just think they are wrong. If given the chance, most people I think, would want to know so that they could resolve their relationships. And say goodbye.

By: Doc

Doc — Sun, 08 Jun 2008 05:55:32 +0000

I don’t see anything healthy about wanting to keep any of this information from ourselves or our family. I think it is a symptom of a sick society to think this is necessary. Of course, my training and over-familiarity with the process have only reinforced this idea. At the same time, percentage of certainty is a completely frightening and messy business for physicians. All we can ever go by is what generally happens to the population in similar circumstances. Prognosticating for an individual is almost always going to involve some guesswork. I think it is only fair to impress upon a patient the gravity of a situation, but what one does with that information is up to them. We all have different coping mechanisms which there is certainly not appropriate for the physician to squash.

Ray,
ALS is undeniably brutal but I also think there is a reason why people find Tuesday’s with Morrie such a powerful book.

By: Bob

Bob — Sun, 08 Jun 2008 05:19:23 +0000

#21: Ray,you seem to know were I am at this point. It’s not a parlor game. My 40 year friend can only move a joystick the size of a toothpick. But I will not judge her, I will only have my own plans, should it happen to me, and do for her as I can.

By: Ray

Ray — Sun, 08 Jun 2008 03:10:48 +0000

A disease like ALS changes all paradigms for me. It is brutal – unbelievably brutal. A neighbor of ours was a tri-athlete and a softball coach. Her daughter is one of the best softball pitchers in the state. She is 40 and in the last stages of ALS. She can barely move, is almost to the point where she can no longer talk and weighs about half of what she did when she was healthy. The trauma has nearly destroyed her children emotionally.

Frankly, if I had ALS I would give serious consideration to going into an institution of some kind for the last few months – saying my good-byes while I still could talk and not making my children watch me die in that manner.

By: queuno

queuno — Sun, 08 Jun 2008 02:36:32 +0000

Nope, all we get is mythologizing about how Brother X or Sister Y was so sure in their testimony that they had zero fear, and just marched right in to meet death.

I guess it depends on whether or not they knew the evil alien robot was behind them…

By: queuno

queuno — Sun, 08 Jun 2008 02:34:47 +0000

1. I want as much detail as I can get.
2. Yes.
3. Not necessarily. Some people make it a point to try to beat the odds.
4. 75% certainty

By: Sarah

Sarah — Sun, 08 Jun 2008 02:14:10 +0000

When I was a kid my dad didn’t make it the least bit clear what was happening to my grandmother, refused to let me come to the funeral, etc. — it messed me up for a long time. I definitely think honesty (at least in a general “this is very bad and we won’t be together anymore” sense) is useful for almost everyone, including myself and small children.

I absolutely think that some people will suffer from the knowledge they’re dying. Then again there are some people who manage to convince themselves into serious illness. Our thoughts and our spirits and our bodies are all connected; this should surprise no one. I don’t believe anyone is “doomed” by that sort of thing (I like to reserve the word for “a train is coming at you and you’re tied to the tracks” scenario, though.) You can’t properly “doom” yourself.

If they tell me I’m dying of radiation poisoning and I’ve got 12 hours, I’ll go for the extra dose of morphine without much of a second thought. But I know too many cancer survivors (and people who were going to be “fine” who died from simple, preventable hospital errors) to be particularly impressed by prognosis timelines. In general I think it’s our business to live, not arrange our own deaths. But I’m young and judgmental.

By: Sam MB

Sam MB — Sun, 08 Jun 2008 01:49:57 +0000

Fascinating to read these. The thoughts here are often different from the thoughts I have seen expressed at the bedside. I’m not sure whether it’s that the question is theoretical on a blog or that the blog-reading demographic differs from others, but many patients and families have earnestly requested withholding of information for themselves or their families. Here in the West, I’m seeing more people like those commenting on this blog than I did in the East.

In terms of the beautiful/good death currently, it was common then to push everyone toward equanimity in the face of death, even if it were haranguing them into deathbed conversion. Though there were beautiful elements in this culture, there were also some that would strike us now as pathological. You’re right that for some this emphasis on calm degrades their ability to respond and adapt and experience natural emotions in the face of death.

Molly, there aren’t clear answers. There is some data that people who have recently lost a spouse die quicker than those who haven’t, but there are debates over whether that’s confounded by the home medical care provided by the spouse or something specific to bereavement in the elderly. The problem with drawing inferences from anecdotes are that we have difficulty remembering situations that don’t confirm our beliefs: the person who learned a diagnosis and died promptly thereafter is far more memorable for most than the one who learned a diagnosis and then lived longer.

By: Jami

Jami — Sun, 08 Jun 2008 01:41:12 +0000

1. Yes, I’d want to know. I’d have some goodbyes that I’d like to say.
2. Yes, I would tell my husband. Otherwise, he would head out the door to work just like it was a normal week. I’d want the time with him.
Kids? I think I would tell the olders, but not the youngers. It would be hard to decide though.
3. I believe that knowing one’s prognosis can change outcomes, but I think individual reactions would vary. Some would try harder to live. Some would simply die.
4. For anyone else in the family, I would do all that it takes to keep them alive, regardless of the percentages. For me, I think (who can know for sure ahead of time) I would skip all the medical intervention and head home on God’s schedule. It is a selfish hope, but I do hope not to live to see my kids or husband die.