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Maintaining dignity at the end of life

by MarciaB / September 14, 2004 11:27 PM PDT

Some of you probably have heard about this because it has been discussed on The Today Show, etc.....

It's a document called "Five Wishes," and I use it for our Hospice patients and families that may need help in talking about this.

http://www.agingwithdignity.org/5wishes.html
"The Five Wishes document helps you express how you want to be treated if you are seriously ill and unable to speak for yourself. It is unique among all other living will and health agent forms because it looks to all of a person's needs: medical, personal, emotional and spiritual. Five Wishes also encourages discussing your wishes with your family and physician."

I know we don't always like to speak of these things, but they are important. I thought some of you might be interested in knowing about it. It is a legal document in all but 15 states, but even in those states it can be a useful tool for discussion of a sensitive topic. http://www.agingwithdignity.org/states.html

Take care,
--Marcia

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Some problems with it.
by James Denison / September 15, 2004 1:44 AM PDT

I had tried to persuade Mom to make a written or a video directive, but instead she insisted on me being totally in charge of those decisions, and that was her only health directive. Her reasons were religious based, mainly on her own conscience. She felt one should believe that as long as there is life, there is hope. She was opposed to "suicide" as a lack of faith or trust in God's mercy. She also felt that to fill out forms about cessation of life prolonging measures constituted "making a covenant with death". Both of the above she considered a "sin".

Basically she told me what she preferred in certain instances and left it to me to make those decisions at the proper time, more for her own conscience sake since she knew I felt a bit differently about stretching out the inevitable beyond what medical science was able to heal.

The problem is it puts the stress of that decision on someone else, but it also keeps a legal document from existing that might interfere with the closest relative from feeling a hospital or doctor was trying to remove life support prematurely. Mom was worried that such documents would let a doctor or hospital be more interested in "saving money" than in "saving her life". She also feared "they" would be more willing to end it too soon in order to harvest body parts if she'd agreed to that.

Of course one can give a veto power to a relative that supercedes the documents, but even that can become legally problematic if that relative then decides to prolong life support longer than the hospital feels is proper, and the hospital wants to challenge that decision.

Basically you can't make a document that covers every contingency, and such documents actually might work against you if there is a conflict between relatives and the hospital giving the life support.

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Re: Some problems with it.
by MKay / September 15, 2004 3:07 AM PDT
In reply to: Some problems with it.

But for some like those at the onset of alzheimers, it can be a God send. If not a legal document at least get their take on what they would like while they can participate.

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Re: Some problems with it.
by MarciaB / September 15, 2004 12:07 PM PDT
In reply to: Some problems with it.

James,

It sounds as if you did your very best as a loving son in whom your Mother trusted, literally, with her life and her death.

Thank God, you, the rest of your family, and her health care workers that your worst fears of "interference" did not come to play when it was time for her to go.

You may be correct in that there isn't one document that covers every contingency, but there are enough to cover many important things. A good, basic, document for emergency situations in the home is the Physician's Orders for Life Sustaining Treatment (POLST). This is filled out by or with the individual specifically for Do Not Resuscitate (DNR) orders and basic life support wishes.

The Five Wishes document has helped many people be able to at least talk to their family members and physician by providing a place to start. In my work with Hospice, I have seen all situations, ranging from those families who are fully prepared and in agreement for the end of life issues of a loved one, to just those things you feared could happen in your situation. The latter is a horrible thing to witness.

I would like to tell you again that the way you love your Mother and took care of her before, during and after her death was admirable. Thank you for sharing what you went through.

--Marcia

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