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Wednesday, June 29, 2011

End of Life Discussions

My email led me to read two connected but very different responses to an impossible conundrum. Here I refer to the increasing probability if not certainty that in the near future it will be possible to test people for Alzheimer's Disease before symptoms of dementia have developed. That is people who are clear and lucid will be told that they are going to develop dementia. The progress of Alzheimer's can be slowed with medication but no cure exists. What then is the point of the new test to predict Alzheimer's? According to researchers and clinicians early detection could help patients and their families to prepare for the future. What exactly do these plans entail? To me the obvious reaction is simple--many would choose not to live. This scares me--it truly has me worried. The implications to vulnerable populations, meaning the elderly and disabled, are potentially dangerous.

According to an article in Time, "As Tests to Predict Alzheimer's Emerge, So May Debates Over Right to Die", by Eric Parens and Josephine Johnston, both scholars at the Hastings Center note:

"None of us can know what sort of slippery slope that request [to die] might put our society on; one day we're giving assistance in dying to Alzheimer's sufferers, the next we're doing the same for people who are depressed or disabled or poor or just old. It is vitally important for us to explore all the reasons against allowing or assisting Alzheimer's patients to end their lives. And it is equally important to begin to explore the reasons on the other side. It is time to listen to and take seriously those people who, upon seeing their own parents spend years, even decades, suffering with Alzheimer's, say that they refuse to expose their partner or children to the same. We cannot ignore competent people who say they would rather die than no longer recognize their children or the partner with whom they built a life. Nor should we dismiss those who say that they can't themselves afford to pay for years of nursing home care, don't want their children saddled with that expense, or would rather the money be used for their grandchildren's education".

The discussion Parens and Johnston want to see begin has not taken place in the United States. I agree a discussion must take place--the sooner the better. However, unlike Parens and Johnston I am wary of such a debate. I am convinced how it will end before it has started--out of the goodness of our souls and with great compassion we will end the lives of those with Alzheimer's. Alzheimer's is a devastating disease that strikes fear into the hearts of those it will affect as well as their families. Alzheimer's destroys what we American's value the most-cognition and personal autonomy. Self determination is slowly and inevitably lost to an individual. It is for most the worst case scenario for the end of life. How we will respond to a discussion is a forgone conclusion in my mind. I am not just in a dark mood. For on the same day I read the Time article by Parens and Johnston I also read a blog post by Stephen Drake of Not Dead Yet. Entitled, "Netherlands: One-third of Doctors Willing to Euthanize Patients with Early Dementia", I was not the least bit surprised that one-third of doctors were willing to end the life of those suffering from early dementia associated with Alzheimer's. Yes, one in three doctors would end the life of a person with dementia. 33% of doctors would end the life of a person with dementia. Think about this statistic. What sort of debate are we really about to enter in here in the USA? I would suggest it is not a debate but rather the search for the justification to end the life of people with dementia. The Dutch have already made such a decision described by the press as a "minority" of doctors are willing to help patients die. This statement is correct. However, it still leaves one in three doctors willing to kill their patient. I do not like these odds--indeed, these odds scare me to the very core.

To me, we are about to start asking all the wrong questions. Instead of wondering if we should be allowing people with Alzheimer's to die I would posit we should be asking how can we empower such people. How can we insure families receive appropriate support, how can we insure families do not incur great debt caring for a loved one. What can people who have Alzheimer's teach us about life? I may appear naive in positing these observations. However, I am not naive. I saw my father experience dementia at the end of his life. It broke my heart and was devastating but at no point did I wish he or his doctors would prematurely end his life. In looking back on those hard days I am intensely gratified for what I was able to do for him. He and my mother cared for me when I was a morbidly sick child and in a very small way I was able to reciprocate their efforts.

Life is not easy nor are end of life issues. I am perplexed why we do not have a vibrant hospice movement in the USA. Simply put we do not often get to choose the way we die. When we start making these sorts of decisions for others as Parens and Johnston pointed out we are potentially on our way to a slippery slope. I know a good bit about this concern as I have seen that slippery slope first hand. I am old enough now to comment on the history of medical care and how our social perceptions dictate care. For example, in the late 1970s surviving a high level spinal cord injury was highly unusual. During my rehabilitation I did not see any quadriplegics--certainly no respirator dependent quadriplegics. I never even heard of anyone surviving such an injury. As I have written before people with high level spinal cord injuries were perceived to have no quality of life. Doctors decided to let nature take its course. That is these men and women were allowed to die. The first quadriplegic I met in college had a C-8 level of injury. One night when he told me "one more inch and I would be dead". Back then you see C-8 was an unwritten cut off mark for survival. This leads me to ask what will become the unofficial cut off mark for survival with Alzheimer's? When and under what circumstances do we decide life is not worth living? Again, this scares me, truly frightens me. You see about once a year some stranger will come up to me and without prompting state "I would rather be dead than use a wheelchair'.

Let us be very clear about the so called debate we are going to enter into. The decision has already been made before we even start the discussion. The variables up for debate with regard to Alzheimer's touch upon what we American's value the most--autonomy. Autonomy however is fluid and ever changing. None of us are ever autonomous beings. We are all in some ways dependent upon others. This dependence could be a job or family. But autonomous beings we are not. So let's no kid ourselves. The Dutch have proved in advance that about on third of doctors have no qualms about killing people with Alzheimer's type dementia. I see no reason to think Americans doctors will be any different. If this does not scare you I will be scared for you.


Becs said...

Well, you know the Dutch. Congo. Apartheid. Etc.

When people mistily say that they would like to die at home, surrounded by family, my response is that I would like to die in a suite at the Pierre. Preferably shot by a jealous wife.

But this is an issue that especially frightens me as I have no family and no money. I worry about this. A lot.

Feisty Kitten said...

Actually there is already medically assisted suicide in some states and across the world. The way they've done it is the right way, waiting times to assure that patients are not making rash decisions, and counseling for those who are merely depressed. But for people who have progressive illnesses such as the aforementioned and ALS, Huntington's, etcetera... honestly, its up to them. I think if I was slowly dying and more and more there was less to live for, I would linger on til I could no longer enjoy my life at all. Then I would make peace with my loved ones and, on my own terms, end it. I think its an important right for those who have progressive illnesses. The key is making sure to protect the vulnerable, which so far seems to have worked so far. I agree that its got potential dangers, but that doesn't mean it should be shot down without a fighting chance.

Eric Fischer said...

Knowing a little bit about both the American and Dutch cultures I would beg to differ with your statement that American doctors would represent an equal statistical front. The Dutch culture is fairly unique, homogeneous, with a therefore more particular social history which predisposes towards the euthanistic culture we have seen establish itself there.

I do agree with you though that for the most part the debate is already over. Twenty years from now euthanasia will be normal. On the other hand don't discount the medical factor in which together with the acceptance of euthanasia there will come advances in the prevention and treatment of illnesses helping to balance the issue somewhat.

Don't forget that while Holland has developed this blase attitude towards euthanasia it is probably still the best place to get palliative care for those that choose to live. I speak from personal experience of my mother who is dying from ALS, in Holland.

Feisty Kitten said...

I don't think anyone would say that someone should die. But they were talking about this on the radio the other day and a woman with ALS who lives in Canada is fighting for her right to die. She doesn't want to right now, but she's progressing to the point where she won't be able to do anything, and she doesn't want to live that way. She does not feel that she is a burden on other people, she doesn't think that her life is unimportant, she simply has a standard for what she considers life, and as her disease progresses, she is losing that. I agree with her. If I had something of the same kind, I would want the very same. In fact, I've made it clear to my own family for many many years that were such a thing ever the case, I would not want to linger. Its a personal choice, and I understand that not everyone agrees with it, and god knows they don't have to, but because it is a personal choice, I feel it should be a right. When presented with such a scenario, I feel it gives dignity to me to have the right to choose how I will go. I also like the idea that I would be able to say good-bye to my family while I was still able and that would give me more peace of mind than lingering on without control of my own thoughts and unable to reach out to my loved ones at the end.

LBC said...

Thank you for posting on this important issue.

I think what disturb me the most about it is the assumption (by doctors and by the public at large, but in these discussions it will be the doctors' opinions that matter most, it seems) that there can be no quality of life past a certain level of functional decline or disability. I've worked with people with profound intellectual disabilities who, despite not being able to communicate in any traditional way, can definitely indicate preference and express emotions - we use that information to, as much as possible each day, give them a quality day where they are treated with respect and dignity. I would hope that the same sort of uprising that fought for the rights of people with these sorts of disabilities would happen if the circumstances for people with early dementia you wrote about started to happen...because the devaluement of life inherent in the assumptions is truly scary. (I hope I'm being clear; I haven't had my coffee yet)

Elizabeth McClung said...

The word 'Alzhiemers' (sic?) brings in terror when Lewys Body does not, or Vascular D or early onset dementia or the dozen types of non-Alzhiemers dementia.

The one group I have never seen represented or heard is from those with dementia. The group I attend the co-chair has dementia, and the opinions of life, of living, of what to learn from dementia isn't heard anywhere I know of. A british group has the best guidelines I have seen, shows how with drop in day-care, middle stage dementia can be managable.

They also are working on night drop in, as many of the dementia's switch the body's clock, so the day is night and night day. I would worry more about putting in legislation for families who, in this modern age, would love to step away from family members, leaving someone else to deal with it instead of worrying about suicide or laws to help kill someone who may have something at sometime.

There are good books written by dutch doctors who do euthenasia, Dancing with Mr. D. was one of the best.

The statement 'well you know the Dutch..' only bring more ignorance into a situation which seems filled with stereotypes and fear already.

Perhaps you, amoung those who have commented can define 'early stage' - as people can be unable to speak, unable to read, to know their name, or where they were born and still be 'early stage'. The same people can then proceed to kick ass in snooker.

The one thing that people don't seem to remember when it comes to Alzhiemers, is that it is about the person WITH A., not primarily those who feel the grief at losing someone to A. It is just that is who is telling the stories.