end-of-life news

[teresag]

http://www.ohsu.edu/son-news/enotes-hospice.shtml

In short: in the July 24 edition of the New England Journal of Medicine, Oregon researchers report on the first study to document hospice nurse experiences with terminally ill patients who deliberately refuse food and water. The researchers found that patients in hospice care who stopped eating and drinking no longer found meaning in living and usually died a "good" death within two weeks after stopping food and fluids. The survey showed that 85 percent of patients died within 15 days after stopping food and fluids. On a scale from 0 (a very bad death) to 9 (a very good death), the median score for the quality of these deaths was 8, as rated by the nurses.

[Fay A.]

I read this article.... too bad those who chose their deaths aren't able to let us know how they rated their own demise.

I'll confess that I'm not the most objective person on this subject. But I can tell you that my PERSONAL experience with dehydration is that is is PAINFUL. My PERSONAL experience with starvation is that it is uncomfortable at first, but after a few days the hunger pains kind of go away.

I'm not letting HOSPICE anywhere near me at any point in this journey.

I have very strong feelings about euthanasia and the role of Hospice in what I see as an effort on the part of our society to force those of us who have chronic, serious health problems to allow others to decide when our quality of life is no longer "good enough" for support in LIVING, but they'll happily put us out of our "misery".

I know what the article stated...It states that these people CHOSE this route. But I've known a few folks who "chose" that route, who changed their minds, and if it hadn't been for the assistance and insistance of friends and family they would not have been allowed to change the course of action they set in motion.

Some of these folks may have been happy with their decision. But we are really NEVER going to know that. And this is one situation where I don't want someone whose job description states specifically that they will not help if I choose to fight for my life evaluating how well my death goes.

Let's face it.... There will be no real Quality Assurance Feedback from the only person whose opinion should matter...the person who was starved and dehydrated to death. Do you really believe that those Medical personnel who particpated in the study are going to tell you that the deaths were anything less than "good" when to do so would set them up for questions as to why they allowed a "bad" process to continue without intervention?

Just my two cents.

Fay A.

[teresag]

Do you really believe that those Medical personnel who particpated in the study are going to tell you that the deaths were anything less than "good" when to do so would set them up for questions as to why they allowed a "bad" process to continue without intervention?

Yes, I do. In the study, nurses were responding to questions regarding a patient who voluntarily gave up food and water specifically for the purpose of hastening their own death. In this case, to intervene against the patient's wishes would have constituted assault because it would contradict the last stated wishes of the patient. So there was no legal or ethical obligation on the nurse to intervene. Four patients of 102 reportedly did resume eating and drinking because of hunger or discomfort, which is a pretty small percentage in my opinion.

This study does not prove anything, of course; it's only one survey of nurses' impressions. And you are correct that we will never know whether uncommunicative patients are uncomfortable from dehydration or hunger. I did not post it to offend anyone, only to show that perhaps caregivers should not be worried when their loved one stops eating or drinking shortly before death, whether voluntarily or because they have lost interest in food or drink. I thought it was encouraging to see that expert observors did not perceive any discomfort in these patients.

[rayroy]

My dad died 1 day after he stopped eating or drinking. His death was horrible and not good. He tried to breath, he tried to spit out the saliva in his lungs, but he couldn't so he drowned. He stopped breathing. He wanted to still live and breath but he couldn't. Hospice nurses wanted to give him high doses of morphine even if he didnt have pain, what is that? I should be a hospice nurse. I know the routine questions and their routine answers. I don't know, I am just upset that dad had to go this way.

[teresag]

Morphine also eases shortness of breath. They probably were trying to ease his discomfort from that. Unfortunately, there aren't many good palliative measures for shortness of breath. I'm sorry he died in such an unpleasant way.

My Dad ate and drank until the morning he died. The last thing he tasted was juice from some peaches canned by my mother-in-law. He called her "Meals on Wheels" because she always brought over good things to eat.

[Fay A.]

Teresa,

I'm sorry if I appeared to be attacking you. I didn't mean that at all.

The median time between the refusal to eat and drink and death was 15 days. That's a full two weeks, and too long to allow someone to suffer when that sufferring can be allieviated.

My Mother, who died of Lung Cancer in June of 1991, ate and drank up until the day she slipped into a coma. She passed away the following day.

I believe you to be an ethical, decent human being, Teresa, as are many others in the Nursing Profession. I'm just not convinced that everyone who wears a Nurse's uniform is.

That was one of the biggest surprizes for me since I began this cancering journey....when I learned that not everyone who is well educated and in a "caring profession" is a caring person, or belongs in caring position. See, I really DO care about others. And I just assumed that other folks felt the same way...They don't. It was a real eye opener for me..

At any rate I apologize if my statements caused you unintended grief. I still stand behind what I said, but hopefully you understand that the statements were not directed towards you or any other caring person in the medical profession. I've just had too many negative experiences to put too much trust in that particular report...especially coming out of the State of Oregon in light of the assisted suicide issue.

There are multiple sides to the question of Quality of LIfe ..I'm just presenting my own feelings on the subject. Life is PRECIOUS to me. I cannot imagine sitting by and allowing anyone to live their final days in pain and discomfort, or to believe that no one cares about them. It is anathema to me.

Hope you understand that this was not an attack on you, just a strong difference of opinion about the objectivity of the study and it's participants.

Fay A

[teresag]

No offense taken, Fay. I suppose I should have explained why I posted it; to show that perhaps not eating and drinking is not an uncomfortable way to die. Since many people cannot eat or drink near the end of life, I thought it was encouraging news. Presumably, these pts. were getting pretty good pain and symptom management, which undoubtedly makes a difference. And the study could not control for that, of course, so we'll never know how big a difference good symptom management makes after a person has stopped eating and drinking.

You mentioned the Oregon assisted suicide law. The group of researchers who did the study have done a lot of follow-up to the assisted suicide law and many other end of life studies. Overall, they've found that few people take advantage of the law and those who do seem to die comfortably.

I'm sorry you've had some bad health care experiences. Unfortunately, just about everyone I know has, including me. Our so-called health care system is badly broken and needs a major overhaul, IMO.