TDB&TB Question #1 ~ Medical Technology

by Jean-Dominique Bauby

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fansmom
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Unread postby fansmom » Mon May 05, 2008 3:58 pm

April 16 was National Advanced Medical Directives Day, which didn't get much publicity, but my local hospital had checklist forms to complete ("yes" to breathing assistance, "no" to long-term IV feeding, etc.) which were then scanned into a database. If I ever show up there, and can't answer for myself, they should be able to find the scan and know my wishes.

Having done that, I then read "I Raise My Eyes To Say Yes," which was written in 1989 by a woman with multiple physical disabilities, who became a spokesperson for the disabled. http://www.amazon.com/Raise-My-Eyes-Say-Yes/dp/0964461633/ref=pd_bbs_sr_1?ie=UTF8&s=books&qid=1210017107&sr=8-1 Never spoke a word in her life, couldn't walk, couldn't use sign language, couldn't feed herself, couldn't sit in a chair. She was wrongly diagnosed as mentally retarded (1950's terminology, because that's when the diagnosis was made) and institutionalized through most of her childhood and adolescence. As an adult, once a system of message boards was worked out to assist her in communicating, she said that she would never even consider judging anyone else's quality of life. I now wonder if I made such judgments about my own potential disabilities when I filled out the medical directive. (Fortunately, it's easily overturned, even by someone unable to speak.)

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Parlez
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Unread postby Parlez » Mon May 05, 2008 4:05 pm

Great responses everyone! I'll only add that I don't think Jean-Do Bauby was any more gifted or heroic or special than anyone else. From what I gather from his story, he was a pretty ordinary kind of guy, with pretty ordinary amounts of ambition, creativity, talent, resilience, ego, etc.. So I think it's fair to say that what he accomplished could be accomplished by anyone. That doesn't take anything away from his amazing accomplishment; I just offer the opinion that amazing things can be achieved by ordinary people. Never underestimate what a human being can do under extraordinary circumstances! It seems to me Jean-Do made choices about his life that are by and large the same kinds of choices available to anyone.

Sorry...this is wandering away from the medical technology issue, maybe. However, the point is, once medical technology hands you back your life, what you do with it is up to you!
"Belay that! ...Do something else!" ~ Hector Barbossa
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Unread postby Inthezone » Mon May 05, 2008 4:19 pm

Parlez wrote:Never underestimate what a human being can do under extraordinary circumstances!


I love that. Well said.
"For certain you must be lost to find the place what can't be found. Elseways everyone would know where it was." ~ Hector Barbossa

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Unread postby trinni » Mon May 05, 2008 4:33 pm

Gosh, its been interesting reading everyones responses so far. I've started to reply to this question twice tonight and both times discarded my post because I had thought of a different slant.
I think that I will have to answer Yes medical technology can have a negative effect but one can only really answer this in retrospect to the event.

In some cases the technology will save/improve a patients life and result in normal or near normal function. In some cases may prolong life with such severe disability or poor quality of life as to be deemed a negative effect. Trouble is that it is often not clear at the outset of treatment what will result.
And who can make the choice to do nothing if there is the slimmest chance?
It is only with the heart that one can see rightly;
What is essential is invisible to the eye.

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Unread postby Endora » Mon May 05, 2008 4:46 pm

I completely get what you say, trinni, but if that slimmest chance of improvement is countered by a much greater chance of increased or prolonged misery, what then? (I can't answer the question myself, that's why I ask others.)

This topic, incidentally, is on a syllabus I'm teaching this year and I would strongly recommend this to people like me without a medical background.

http://www.amazon.co.uk/gp/product/toc/0192802828/sr=8-1/qid=1210020125/ref=dp_toc?ie=UTF8&n=266239&qid=1210020125&sr=8-1
Work hard, learn well, and make peace with the fact that you'll never be as cool as Johnny Depp. GQ.

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Unread postby trinni » Mon May 05, 2008 5:02 pm

Endora
I have little experience nursing in these situations but I have seen a similar situation occur in my midwifery experience. When I trained 30 years ago premature babies were deemed viable at 28 weeks, very few under 2 lbs lived. Babies born before this cut off point were not resuscitated. If born alive we would place them in a warm incubator until they passed away. Now infants born at 24 weeks or earlier can be resuscitated. Some of them survive. A very few in good health, but many with severe residual damage to lungs or brain.
DH and I in discussing this before our children were born both felt that we would say no to to much effort being put in if this were the case, but I bet if I was faced with the decision, I would not have been able to say "don't try".
It is only with the heart that one can see rightly;
What is essential is invisible to the eye.

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Endora
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Unread postby Endora » Mon May 05, 2008 5:14 pm

Absolutely, it's the humane response I'm sure. But that head/ heart dichotomy is still there.

I had aimed to avoid any anecdotal evidence here, but from what you say, here's one. The one student I have got into Cambridge this year (medicine) was born at 28 weeks weighing around a kilo. Her awareness of her care when born made her go for medicine, so a kind of kismet?

But even so, I'm not sure such wonderful stories are analogous to the story of Jean-Do.
Work hard, learn well, and make peace with the fact that you'll never be as cool as Johnny Depp. GQ.

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Unread postby suec » Mon May 05, 2008 5:21 pm

Trinni, I have encountered your point about premature babies surviving, when in the past they wouldn't have, as an explanation for increased numbers of pupils in special schools. I think your point about actually being faced with the decision is an excellent one.

Fansom, the book sounds like it would be very valuable to read. I like your point about judging your potential disabilities too.
"Luck... inspiration... both only really happen to you when you empty your heart of ambition, purpose, and plan; when you give yourself, completely, to the golden, fate-filled moment."

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Unread postby nebraska » Mon May 05, 2008 5:41 pm

Whew! No dillydallying around here, let's jump right into the thick of it!
:cool:

I think improved medical technology is a double-edged sword. Many patients can be cured, made comfortable, or live longer productive lives than in the past.

I think medical technology can definitely go too far. I think it is unfair to force people to go on and on when there is no reasonable hope of recovery. Sometimes it seems as if the goal is simply to make physical life last longer at any cost (both human and financial) and regardless of the quality of that life. Jean-Do left us a beautiful little book.......but is that enough to justify the months of "life" he endured locked in as he was? His own words sound as though he would have preferred to exit this world quickly and have it done with. Beneath the humor, I think he is very serious.

While I was reading the book and preparing for this discussion, there were two deaths in my small community that touched me in relation to this subject. One was a 38-year-old woman who had been in a car accident during her high school years and was left a paraplegic. She lived over half her life as an invalid and suffered many medical complications. But she also had a soul mate and a family who loved her and were devastated by her loss. Her paralyzed condition had become their "normal". The other death was a 35 year old man who had been severely brain damaged by a medication error in a hospital when he was a preschooler. Mentally he remained a small child and physically he was twisted and deformed. At the visitation, his mother told me that it had taken over a year for him to laugh with his trach, but once he learned to laugh, he woke them each morning with his giggling. That family, too, is devastated by his loss. I am not sure what all of that means -- those two people added joy and love to the lives of the people around them -- but there was also much pain and suffering and it could be argued it simply took them a long time to die.
Last edited by nebraska on Mon May 05, 2008 6:00 pm, edited 1 time in total.

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Unread postby DeppInTheHeartOfTexas » Mon May 05, 2008 5:58 pm

Parlez wrote:
Never underestimate what a human being can do under extraordinary circumstances!


So true! And sometimes I think extraordinary circumstances are what bring out the extraordinary characteristics in a person being able to accomplish something they would never have thought possible.

I think one of the reasons opinions on this topic are so diverse is because it is so personal and individualized to each circumstance. I do think it is very important to have these difficult conversations with family members.

fansmom, that is interesting about the specific checklist. I'm not sure I would know enough about the medical technology to say yes or no to some things.

Great discussion so far!
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Unread postby Liz » Mon May 05, 2008 8:23 pm

Looks like a worthwhile book to read, Endora.

Trinni, good to see you here. :wave: What you say here is exactly where I’m at.

trinni wrote:I think that I will have to answer Yes medical technology can have a negative effect but one can only really answer this in retrospect to the event.


Endora wrote: but if that slimmest chance of improvement is countered by a much greater chance of increased or prolonged misery, what then? (I can't answer the question myself, that's why I ask others.)

And Endora, me too. This is the other side of my argument to myself.

You have all had so many great examples and resources to share on this question. So much food for thought! :-) Unfortunately, there are as many reasons for as against; and I’m no closer to jumping off that fence. I’d say I’m amazed, but I’m not. I’ve begun to expect this level involvement from youse guys. :thumbsup: :thumbsup:
You can't judge a book by its cover.

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Unread postby Inthezone » Mon May 05, 2008 8:35 pm

trinni wrote:I think that I will have to answer Yes medical technology can have a negative effect but one can only really answer this in retrospect to the event.


Trinni - do you mean the equivalent of "hindsight is 20/20?" Or are you referring to medical mishap? I'm just 'wonderin.

Liz wrote:You have all had so many great examples and resources to share on this question. So much food for thought! :-) Unfortunately, there are as many reasons for as against; and I’m no closer to jumping off that fence. I’d say I’m amazed, but I’m not. I’ve begun to expect this level involvement from youse guys. :thumbsup: :thumbsup:


"youse guys" - sounds like an east coaster! :eyebrow: LOL
Now I have a question - is this a weekly q&a forum or a daily thing? Just curious.
"For certain you must be lost to find the place what can't be found. Elseways everyone would know where it was." ~ Hector Barbossa

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Unread postby DeppInTheHeartOfTexas » Mon May 05, 2008 9:01 pm

Inthezone, we will ask a new question each day. We usually have around 30 questions prepared but some discussions are a little shorter depending on the book and the discussion itself. However, you may go back and add to any question thread at any time. So, if you miss a day or have a thought about a particular question later it's never too late to jump back in. :cool:
Life is not a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming -

Wow! What a ride!

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Unread postby shadowydog » Mon May 05, 2008 9:35 pm

Wow - Now here is a loaded question. Suppose we never tried to treat people for medical conditions? The human race has advanced and extended life and quality of life over the centuries by trying to find ways to save people who were considered terminal and incurible. Look at the diseases and medical conditions that were considered incurable just 100 years ago. If the medical community had not ever tried to save any of these people, and learned from these efforts, how many of us would have lived to reach the age we are now. Should we have given up on trying to treat people with AIDS; cancer; strokes; immature birth; babies born with birth defects; and on and on? Only by trying to save life have we learned how to prolong life and improve the quality of life. Conditions considered terminal even 10 years ago are being treated today. And conditions considered terminal and not worth treating today will be treated 10 years from now - quite successfully. None of this would ever have happened or will ever continue to happen if people were classified as not worth treating or saving. Just my two cents and humble opinion.

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Unread postby nebraska » Mon May 05, 2008 9:50 pm

shadowydog wrote:Wow - Now here is a loaded question. Suppose we never tried to treat people for medical conditions? The human race has advanced and extended life and quality of life over the centuries by trying to find ways to save people who were considered terminal and incurible. Look at the diseases and medical conditions that were considered incurable just 100 years ago. If the medical community had not ever tried to save any of these people, and learned from these efforts, how many of us would have lived to reach the age we are now.


And I agree with this as well. My SIL who passed away last winter from breast cancer was on experimental drugs, part of a study, not always certain if she was getting the real drug or the placebo. This is another side of the question, isn't it.......will the possible benefit to future patients be worth what she went through the last few years? No easy answers.


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