Tuesday, December 19

First Freedom First: End of Life Care


Panties not only liven up a blog,
they can lighten up a funeral.
Surprise the widow with a gift she'll never forget!
(No linky. Don't you think the poor woman
has suffered enough?)


But seriously folks...

Seriously. This post is about death.

I remember when a relative of mine was in hospice care with stage four lung cancer. My relative never smoked and took her vitamins, etc. The kind woman who volunteered at the hospice told us that her husband had died under the same circumstances. I was astonished that someone who lost her husband in such conditions could volunteer to watch others die of the same thing. People don't walk out of hospices. But this woman was committed to making sure people died with care and dignity. And she put her emotions and her time and her energy to that end.

End of Life Care is code for if you're dying, you get to die. This may include refusing tube feeding or even breathing apparatus, or it may just go so far as a "do not resuscitate" order should a patient die while under care. It can go so far as physician-assisted suicide. (Doctor Doug, please comment on all this, btw.) It's a tough nut for the medical community to crack, as that community is rightly committed to saving lives, not ending them or allowing them to end. I remember reading about a doctor in the NYT Sunday Magazine a few months ago who took extreme measures to save a 96-year-old woman in a vegetative state. Asked why he did that, he said frankly and without irony: "If I didn't, she would die."

As the boomers continue to age, like it or not, they seem as a generation to want a tremendous amount of control as to how they die and under what circumstances any extreme measures should be made to save them in terminal circumstances. The medical community is responding, slowly but surely: Eldercare, hospice, and end-of-life issues, not to mention physician-assisted suicide, are hot topics at AMA meetings, fo' sho.

This is an issue, I think, where the religious right does not have the best interests of individual Americans at heart, and individual Americans know it. Pew Research Center polling shows overwhelming support for Right to Die laws and strong consideration, if not implementation, of living wills, especially after the publicity of the Terri Schiavo case.

Yet Congress continues to be whores to the religious right and their bullhorns on this. I'm with Sister Maureen Fiedler, SL, host of public radio's Interfaith Voices, who said in response to the Schiavo Congressional intercession:

"Would this same Congress return for a special session to appropriate the billions of dollars that we've already promised to AIDS victims to ensure that they live? .… to approve the funds needed for African Union peacekeepers to stop genocide in the Sudan? … to save uncounted American lives by providing every citizen with guaranteed health insurance? Would they devote a special session to the lives lost in Iraq? ….an accounting of Iraqi lives lost?"


There is a big gap, folks, between wanting some control over how you die in Schiavo-like circumstances and actually filling out the paperwork. I myself fall into that gap. One of my New Year's resolutions is to do something about it.

11 comments:

  1. Anonymous2:37 PM

    I'm with you on that one my friend...

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  2. A must resolution for 2007, for sure. Fortunately, as we are married in Canada and N.A.D.A. here, we have had to heap loads and loads of extra paperwork into our wills and have thoughtfully considered most of the points of your post.

    My biggest fear is that my partner will end up needed medical decsions made and no one will give a rat's ass what I think. Living Will, or not.

    As always - keep up the awesome work.

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  3. Yeah, talk is cheap. Not one of us knows how we'll really feel when faced with choosing that "Do Not Resusitate" order. I was with my father when he was asked that question. He had been admitted to the oncology ward after months of testing and treatment during which he had continued to spiral downward at an alarming rate. There were still lots of unanswered questions about his prognosis, but I knew what his stand was on prolonging life through artificial means when there was little or no hope of recovery. We had discussed it often over a period of many years. No chemo. No respirator. No feeding tube. He was definitely of the "send me home to die" school of thought.

    But at that moment, when the question was as real as it was ever going to get, his answer was "I'm not sure. I guess I wouldn't want anyone to stop trying to revive me too soon."

    He died less than 36 hours later after falling into a non-responsive comatose state, and in the end, all the paperwork fell into my hands. I signed the DNR order with a clear conscience based on a deep knowledge of my father's views that included many conversations over many years, and also took into account his final expressed sentiments.

    So, yes. The official paperwork is essential, but so too is a continued dialogue with loved ones so that they have a long-standing and finely nuanced understanding of your desires.

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  4. You can set this up at the same time you do your Will, and designate a Durable Power of Attorney for Healthcare: you set up the terms and conditions right there, you name the person you are granting the power to, and you are done.

    I did this some years back, and it is one of the things that makes me sleep well at night.

    Regards,

    Tengrain

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  5. Anonymous4:44 PM

    I don't mean to sound like a eugenist here, but it stands to reason that a lot more people will be elderly than will be un-elderly very shortly.

    In a world already strapped for natural resources, it strikes me as super selfish to keep people in comas and vegetative states who might as well be better off in some state some call heaven and I say better off.

    No one is quite sure how this explosion of elderly folk is going to affect those of us non-boomers *raises hand* out there.

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  6. Hospice workers are saints on earth. End of story.

    Yes I've had the question asked by my doctor, and I insisted that I be resusitated.

    However, I am middle aged and still had a lot of energy to fight cancer.

    My 90 year old father in-law is very clear that he wants the plug pulled if he gets bad off. Its in his will.

    I do believe that the right to die will be a major issue in the coming years as boomers clog the health care system.

    Death on your own terms, it's a goal but hardly ever a reality

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  7. Anonymous8:22 PM

    Part of the problem, at least in the future, is that we are getting older without replacing the population, at least in the West, with the exception of the US and New Zealand. Almost all the countries with socialised health care will be overwhelmed in the future, alas. What that means for end of life care is that there will be less people to care for the dying boomers (my parent's generation) in the next 20 to 30 years. The problem will not be as exaberated in the United States, but in Canada in Europe, it will be tough.

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  8. Anonymous9:31 PM

    The theological portion of medical ethics is strange and sometimes self-contradictory. On the one hand, many argue that we should not "play god" by means of genetic manipulation, cloning, etc. On the other hand, many of these same would argue that, in a Schiavo-like situation, we should keep a person alive as long as possible, even though this can only be achieved by "playing god" through artificial means. It's a good example of the folly of trying to implement "god's will" through public policy -- until we get a "thou shalt resuscitate" order from the top of the mountain, the wishes of the individual should be paramount.

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  9. Of course, in the case of Sciavo's parents, the Vatican was the top of the mountain. Thanks, folks. Great comment thread here, again.

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  10. always interested12:12 AM

    When I was taking some master of social work studies, another student, with whom I had shared a class before, said I would be shocked to hear what nurses in her ethics class were (apparently) being trained to believe/practice--essentially, in difficult situations, let patients die. That might be pragmatic; it isn't ethical. She knew that I had been in an emergency ward with my elderly parent, and a nurse asked me what did I want to do, did I want to sign a no resucitation order, in case my parent had a heart attack during the night? I said no, of course not. The nurse then asked me what they should do, and I said, everything that you can. My parent died four years later, at an age expected in the extended family (81) and there seemed to be a peace about it all. One of the problems the nurse was experiencing was that she was the only nurse in the emergency ward for 19 patients. That wasn't the patients' problem. I felt very sorry for an older man who was trying to tell people from his emergency bed that he was 96 years old. That was obviously part of his medical history. He was coherent--and seemed to be ignored. People have a right to live. There isn't a cut off time for living. At the same time, I believe that my mother, who had been a practical nurse for 18 years, till she retired, would not have wanted to live beyond the time that she did, due to her particular medical conditions. Before she passed away, my mother and my niece, and my niece's son, and I, had the best time we had had in a long time. The next morning, she was gone. It was her time. The right to die with dignity, includes the right to live with dignity. Oh, and yes, my partner and I have signed legal papers (here in Canada) allowing one of us to act with power of attorney, if one has to make medical decisions for the other. Those papers would have to be authorized in court at the time, and it is probably time to have the papers updated.

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  11. We completed living wills and advance directives a few years ago before I had sinus surgery -- not risky, but it just seemed like a good idea. Now Husband wants to add a caveat to his that if Tom Delay tries to intervene in his death, we are to tell good 'ol Tom to get bent.

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