Monday, March 28, 2005

THIS ONE'S FOR GRANDAD

I've been musing over the consequences of the courts' decisions on Schiavo, and I think this is one that will prove to be a sleeper (i.e., one that will change our society in ways unintended).

One of the main outcomes of this case (and the other cases (Sun Hudson, a 6-month-old baby) and (Spiro Nikolouzos, whose right to continued life depends on medical coverage) that have reached the news recently) is that your right to continued existence is no longer a given. Anytime you reach a level that someone would consider less than optimal, you could be history.
Sun's death marks the first time a hospital has been allowed by a U.S. judge to discontinue an infant's life-sustaining care against a parent's wishes, according to bioethical experts.

Neither Hudson nor Nikolouzos were terminal. Hudson had continued much longer than it was believed he could - most babies with his condition die shortly after birth, if not before. His breathing tube was removed over his mother's strong protests.

I'm old enough to remember when many birth defects were considered incompatible with life. Cystic Fibrosis is one of those:
Close attention to and prompt treatment of respiratory and digestive complications have dramatically increased the expected life span of a person with CF. While several decades ago most children with Cystic Fibrosis died by age 2, today about half of all people with Cystic Fibrosis live past age 31.

It didn't happen by chance. Someone had to make the decision to aggressively treat the condition. That someone believed that life was better than death, and that it was good to prolong that life. That orientation is what's missing in these "right-to-die" cases.

I am a Catholic. I fall on the side of continued existence whenever there's a doubt. I don't expect life to be without pain, either physical or emotional. In the case of dying patients, that pain should be managed agressively. No one should suffer in their last days, due to concerns about addiction. On the other hand, fear of pain should not lead us to check out prematurely.

It's a delicate balance. Nursing staffs bear the brunt of the burden of care. They see the down moments, and, sometimes, nurses develop a pessimistic mentality. It has to be hard to see patients who are not improving, not getting better, not eventually leaving the facility. Many nurses have thought long and hard about these issues, and eventually develop a personal philosophy that sustains them in their job.

But, the families seldom have the advantage of time. They are confronted by the need to make sudden decisions in the midst of a health crisis. They are particularly vulnerable to suggestion and pressure from the staff. That may be what happened to Michael Schiavo. He, more than the Schindlers, spent time with the staff. The Schindlers, in contrast, spent more time with their child, and less with the staff. They were more influenced by their interactions with their daughter.

Will these life-and-death decisions continue to be driven by the bottom line? Sadly, I fear so, particularly as the hospice facilities take over the end-of-life treatment from hospitals.

Terri wasn't dying; she was, however, going to need a great deal of care for a very long time. The decision to end her life had to be, in part, driven by the enormous resources required to keep her alive. It's funny that we have this huge investment in care for terminal patients, but we have VERY few resources to assist caring for long-term disabled patients. It either falls on the family, or it exists only in limited form, in nursing homes. I think it's no coincidence that nursing homes have gotten the reputation of being "hell-holes". That publicity is driven by the desire to push people to chose the "humane" solution of death.

How does my grandfather come into this? He had a major industrial accident as a young (under 30) man, and was terribly scarred. He hovered on the brink of life and death for a very long time. Thanks to treatment by Mayo Clinic (he was one of the first plastic surgery cases), his face was re-built, and he returned to working.

Before his 50th birthday, he suffered his first major heart attack. He had several strokes, and only regained functioning with the help of his wife, my grandmother. He lived another 36 years.

I remember a funny, child-oriented man. He was playful, indulgent (his grandchildren could do no wrong), and one of the bright spots of my childhood. When he, time and time again, fell into the hands of medical persons, they operated on the assumption that, of course, he would want to live. They agressively treated all his symptoms, and gave him a high quality of life. It was a good life, if limited by his disabilities.

I fear that, were he to encounter health professionals today, the outcome would be very different. They would shake their heads, and talk about his suffering (he did experience long-term pain). They would have counseled his wife to "get on with her life" and "let him go".

They would have made a BIG mistake.

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