Advanced Care; specific choices

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normal Advanced Care; specific choices

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I am looking for a comprehensive list of possible choices to include in a Living Will, perhaps a checklist, with ityems such as:

Item Want
Kidney transplant yes no
Kidney Dialysis yes no
Cardiac catherization yes no


etc

Surely someone has developed such a list which would far more comprehensive than one I might develop.


Posted on 2002/5/10 7:38




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I am looking for a comprehensive list of possible choices to include in a Living Will, perhaps a checklist, with ityems such as:

Item............................. Want
--------------------------------------
Kidney transplant...........yes no
Kidney Dialysis..............yes no
Cardiac catherization......yes no


etc

Surely someone has developed such a list which would far more comprehensive than one I might develop.


Posted on 2002/5/10 8:13




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Hi, DRM!

Haven't seen you before in the forums (that I can remember...Hmmm, maybe I should be taking a little more vitamin E). Thanks for stopping by at ElderHope!

There are several lists in the book Medical Care of the Soul (I forget who wrote that at the moment... a very good book though). The author spends a fair amount of time examining the different types of Advance Directives and situations in which a person would/would not want them used.

I can't recollect, off hand, where another online list would be. But, I think it would be a neat thing to create such a list here. Certainly, we'll be glad to add it to the site if our visitors will participate in adding to this!

So, I'll add one or two, and maybe more later:

chemotherapy for non-palliative purposes (curative)
antibiotics for non palliative purposes (curative)
radiation for non-palliative purposes (curative)

Just to make sure we're not talking medical lingo here. Palliative means that the aim of treatment is comfort, NOT a cure.

Good topic DRM! Hope we can get such a list together.

OTHERS?


Posted on 2002/5/10 10:25




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Mike: Thnks for the reply. I have found bits and pieces here and there. Maybe I will combine them into a list as you suggested.


Posted on 2002/5/10 12:22




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So far, have been unable to find such a list anywhere. So have started my own. It is a rough draft in Quattro Pro spreadsheet format at present. And I will have to severely edit it. I am entering it here in case anyone wants to get on the bandwagon and contribute. Download here:

http://us.f1.yahoofs.com/users/3e7d9ae5/bc/Medical/Living+Will+Options.wb3?bcVgf48A8F0DB9eF


Posted on 2002/5/15 1:02




normal Geez, I love it!

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I can't believe the work you went to, drm! :D

What do you want to do with this?

If you'd like, I can try to edit it and put it into pdf format so that it can be easily downloaded in a readable and easily printable format. :fused: If you want you can e-mail me or easily send me a private message from here within the board.

It would take a while before I could get to it (read a couple of months), but perhaps I could make it into a form, like any other input form you'd fill out on the internet, then it would print out your choices, neatly, on a piece of paper.

In one of the organizations we are partnered with, this has been a major discussion. People do not understand what all these things are and seem to have little desire to learn about them, until an emergency arises, then they just do whatever the doctor says. :nw: We have discussed a good bit how to get people motivated, get them informed to a level where they understand the issues, then help them to complete their directives. Still don't know how to go about that.

Also, did you by any chance check out The Five Wishes? It's here: [url]http://www.agingwithdignity.org[/url]. I was just reviewing it in the book Medical Care of the Soul by Bruce Bartlow, M.D. The Five Wishes also adds an option to signify that you want to have certain procedures reversed, such as a feeding tube, if they have been previously started. This is a delimma I find in many situations: the family was faced with an emergency situation (and was sometimes pressured) and put in a feeding tube. They decide later that it's not doing any good, but they are reluctant to remove it because they feel that it's an aggressive move to hurt the patient. "I wish now that I had never had it put in. But since it's in I just feel that I can't remove it." A clause similar to that in the Five Wishes would (well, might) help alleviate some of the guilt.

One of the things that Bartlow lists out really well is the various approaches to doing this. One approach is the checklist of what you would want if you were terminally ill or in an irreversible coma. Another approach that he mentions was developed by Madlyn Brod. It asks hypothetical questions about how you would want to be treated in a given scenario. Bartlow developed his own version of this. You can see it here as well as an article that expresses his concerns well: [url]http://www.chestnet.org/sections/chapters/california/newsltr.v01n02.html#eol[/url]. The last one he lists is The Five Wishes. He states: "It does the most thorough job I've seen of focusing on goals, hopes, wishes, desires for yourself and your family, spiritual aspirations, the setting of the last of life, and guiding you to what you consider what you need to complete (Bartlow, 20)."

I think what you've done here could be a helpful instrument in honing the Living Will and getting folks to be more reflective about options. I'll try to work on it some more as well. We're teaching a seminar Thursday and I'm working on a coupla' other things. But this is exciting! so hopefully will be back on it sooner or later.

For other visitors, I hope you'll try and take a look at what drm has done. This is the kind of thought and innovation that will make end-of-life care improve.

Oh, well, enough yacking! :zzz:

Thanks and take care. I'll try and add some later.[/b]


Posted on 2002/5/15 2:14




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Miike:
In talking with her Internist, she said the same thing: The biggest problem hospitals have is yes/no to the feeding tube. I got into this because my wife is rapidly approaching a state where she might be unable to communicate her wishes verbally. I thought it might be prudent get the children here (my children are in their 50s) and ask my wife these questions, noting her replies so that if the worse should happen, no one will be inclined to say "You should have done this". Everyone would have a good idea of what she would have wanted.

The health proxy gives me the legal right, but even I might not be sure, had we not discussed these things while we still could. 5 wishes is not freeware and many might not see it for this reason and so I thought I might get the ball rolling. I could not copy its contents to this forum as it may be copyrighted. I can appreciate that no document can cover all bases. But I would like to get people to thinking about it. I do not have the knowledge to put it in a format which other viewers could view it as I had written it. And I suppose the medical/legal disclaimer would be two pages long!!!

Unfortunately the Internet is so vast that people do not seem to learn about an excellent forum such as this. But I appriciate your interest in this matter.

Don


Posted on 2002/5/15 7:55




normal Sorry to hear that your wife is going through such changes

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Don:

I am sorry that this is not purely and academic interest, that your wife is ill. :( My family had such a discussion last year). It was very helpful. Very, very helpful. We weren't faced with your situation, though.

As time permits, I may try and put this online in a form that folks could fill out. I'll keep you posted as I do this.

Well, it was a long day, my birthday, actually, plus the seminar, so I'm going to hit the sack now and call it quits. I'll offer a prayer on your wife's behalf. :zzz:

Take care...


Posted on 2002/5/17 3:37




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normal bad link

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In my May 14 post, it looks like the link is broke. Will try it here:

[url]http://us.f1.yahoofs.com/users/3e7d9ae5/bc/Medical/Living+Will+Options.wb3?bcgE4_8AEeLSB9eF[/url]
Don[/url]


Posted on 2002/6/6 11:19




question Re: Your 2002 spreadsheet post to "Elder Hope"


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TO: ElderHope visitor, 2002

I am writing to ask for a copy of the spreadsheet that you developed that, apparently, lists possible medical decisions that might need to be made for someone who would be unconscious or incompetent.

You posted a link to the spreadsheet on a forum in "ElderHope" back in 2002. Unfortunately, that link no longer functions.

Just like you, I was faced with the need to prepare a list of possible decisions, to discuss with someone while they still were lucid enough to express their wishes. I did find find the book "Medical Care of the Soul" extremely helpful, but nonetheless not as specific as I would have liked. I would be grateful for a chance to see what you developed.

Thanks, and best wishes,

Mike


Posted on 2005/1/9 9:32




normal Re: Your 2002 spreadsheet post to "Elder Hope"


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Dear Mike4L:

The file that our the visitor listed was part of a post that was made long, long ago - even past the time listed - as I remember. He sent me a copy of the file he had prepared - but that was three moves ago and I doubt I still have it (wouldn't even know where to look for it). If there are a number of others who'd like to have something like this, I can try to prepare one. I just don't have a lot of spare time, unless its something that will be really worthwhile. I'll put up a poll later this week to see if folks want something like this (if I can remember ).
Part of the problem is that these kinds of things are so contingent upon what the situation is (as reflected in some of the newer Living Wills - that are now called ethical wills). In other words, in almost all circumstances I want anitbiotics given. But, if I have say, a glioblastoma (a brain cancer type), I will most likely not want antibiotics given for an infection, at least as the disease process gets anywhere near the end. So, it really is so variable as to the nature of the illness, and is therefore often hard to delineate in a legal document.

Still, such tools as are being mentioned here may be very helpful in having a family discussion, which is, really, the best form of Living Will.


Posted on 2005/1/24 11:43


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<strong><span style="font-size:medium;"><span style="color:#990000;">For every human problem, there is a neat, simple solution; and it is always wrong.<br /><br />--H.L. Mencken</span></span></strong> <img src="http://www.elderhope.com/uploads/smil3db...


normal Re: Your 2002 spreadsheet post to "Elder Hope"

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When you set out choices, you should also try to convey under what circumstances you would want x intervention. This is one of the places that Advance Directives get tricky. So, for instance, you've had pneumonia six times within the last year: The next time you get it, do you want antibiotics? How about if you don't get pneumonia until six years later? Would you be far enough out of the woods at that point to feel like you would want it then? And, what if you also had sever diabetes for whcih you were on dialysis three times per week. Would you then want antibiotics?

This is why it's hard to say when/where we want particular interventions. Having said that, listing your preferences for wanted unwanted interventions and a basic guideline for when you would/would not want that intervention might be a good idea. More important, to my sensibilities (what few they may be), is to make sure I have someone to speak for me with whom I have been intimate enough with and have verbalized my preferences enough with that there is not a lot of doubt about what I would want.

I'm also a little worried about spelling out all the interventions piece by piece because I fear that it might leave my beloved wife open to legal action should she know I would/would not want something spelled out in the list, but for which the circumstances were unexpected (not that anyone's going to lose any sleep when that time comes )

The recent events in Florida leave me feeling that the only real protection we have to make sure our wishes are honored are: 1) A truly intimate relationship of love and respect with all our family and; 2) As much of an ironclad designation of my wife as decisionmaker as I can make (Durable Power of Attorney for Health Care); And, 3) threatening family members that if they contravene her, I'll come back from whereever I am and make life hell for them.

Having said that, interventions to consider are:

Ventilator
Dialysis
Antibiotics
Surgery
CPR
Chemical Code
Tube feeding
Hydration via IV
Hydration via mouth
Oral moistening
Pleasure feeding (chewing small morsels, then spitting them out - for the flavor and sensation of chewing)
Chemotherapy
Amount of pain control desired
Terminal sedation
Desired consciousness versus pain management

That's good for starters. I'll add more later as I remember others. Hope that this is helpful for those trying to wade their way through this minefield.


Posted on 2005/4/1 6:39


_________________
<strong><span style="font-size:medium;"><span style="color:#990000;">For every human problem, there is a neat, simple solution; and it is always wrong.<br /><br />--H.L. Mencken</span></span></strong> <img src="http://www.elderhope.com/uploads/smil3db...


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