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Hospice care provides end of life options

Fri, Apr 20th, 2007
Posted in Commentary

About a month ago Charles Krauthammer wrote an article in Newsweek titled "The Good Death". It called to be read because the magazine printed a picture of Mohammed Atta (the leader of the 9-11 attack) juxtaposed with Sister Theresa. Shortly thereafter the Washington Post had a revealing article about changes in some hospice care procedures. Last week I read California's legislature is considering a bill to allow physician assisted suicide. This started me on a recurring reverie I have on occasion about the deaths I have been associated with in some way in the past.

There are some who have more occasion to be present during deaths than doctors. The military comes to mind immediately. Violent deaths of young people are often the ones most vivid in my memories. The two young policemen shot and killed when responding to a domestic disturbance leaving wives and small children behind. The ten month old girl killed by her unstable mother. The girl had been returned to the mother days before after being taken by social services because of physical abuse. Many other young people not allowed full blossom because of violence and accidental death.

Almost always I evolve into a recall of deaths that have impacted in some significant way on my memory. Deaths not necessarily associated with the violence of crimes. Deaths of the aged and the infirm. The kind of deaths involved in the discussions in the California legislature and associated with hospice care.

There are many patients I can recall with, at least at the time, untreatable terminal illness. It may be selective memory but all of them could have shown Krauthammer how to have a good and dignified death. None had an assisted suicide. For some there was pain they overcame almost completely. Some felt the bitterness of not having control over even the smallest thing and managed to keep their dignity and self worth intact.

Medicine is getting somewhat better at end of life care. Hospice is a great step forward. The new paradigm now is that some hospice plans are allowing hospice patients to continue some therapies and trials. The result is more patients opting for hospice care at home.

Doctors are interventionists. They are taught to diagnose and treat. As long as they can tell the patient and family, "we can try this next", the doctor is comfortable. When there is nothing else to try the doctors often are uncomfortable enough to avoid the patient and their families causing a feeling of abandonment. Now, at least, doctors can refer to hospice staffed by doctors, nurses and ancillary personnel who can cope with death as something less than a failure.

My own family is illustrative of the changes. I was physically present in the room for both of my parent's deaths and attended professionally my eldest sister's.

My father's death occurred early in my practice at a distant hospital. He knew he was terminal, even though he had been hospitalized many time before for the same problems. He told me so as soon as I walked into the room and he had never spoken of it before. If he had gone through all the stages Kubler -Ross described I was unaware of it. Still he just closed his eyes and seemed to fall asleep. An hour later I called Mom. There was no intensive care unit, code blue, electric shocking or tubes in the lungs. He didn't have a directive, he just told his doctor what he wanted.

Mom was just as direct. Mom did accept the stricture of hospice to forgo all treatments except those to keep her comfortable. She didn't accept losing all control. She kept asking for (and receiving) sweets and goodies she used to like right to the end, even though I don't think she had any intention of eating them. She wanted confirmation she was still in control, still respected, and still loved. Often I wish my father would have had the same opportunity.

We are now faced, each one of us, with the aspect of dying in an intensive care unit with the attendant tubes, needles and other paraphernalia. Those who don't die suddenly unattended, violently, or with a long diagnosed fatal illness will need to face that at some time in the future. After thinking about it for many years I still do not feel competent to advise anyone on a particular course of action.

Hospice has made deaths (and life) easier for doctors who feel death is a personal failure. If all hospice plans allow continued therapy options it will make life and death decisions easier for, at least, a subset of patients as well as their doctors.

Robert Sauer lives in Preston and can be contacted at r.sauer@mchsi.com

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