When I heard what the woman wanted, I thought to myself, you are out of your #^&*ing mind. I was an attorney at the time, working for another attorney and he was putting together a living will for her. We needed to know what level of medical care she wanted in case she couldn’t speak for herself.
She wanted anything and everything done to keep her body going, even if she was brain dead. Any kind of machine, any kind of tube stuck into any part of her body, any kind of drug needed to keep her body going, that’s what she wanted. I couldn’t imagine putting myself, or my family, into a situation like that.
I practiced law for 16 years and for a time had the pleasure of working for a nonprofit legal organization where I provided free legal services to cancer survivors (it was an opportunity for which I’m very grateful). I wrote many living wills and health care powers of attorney. This woman’s approach was in the minority, but there were people who seemed to think they could literally live forever given enough medical intervention.
Some years ago, near where I live, a daughter sued her mother concerning the care of her father (and the mother’s husband). He was dying of dementia and in a nursing home. When he was of sound mind he also had a living will done. He didn’t want any heroic medical intervention, including a feeding tube (which is inserted surgically from outside the body into the stomach so nutrition could be put in the stomach). His disease advanced to the point where he was unconscious and he lost the ability to swallow.
His wife told the nursing home to insert the feeding tube to keep her husband’s body alive, contrary to her husband’s wishes and even though the disease had essentially rotted his brain to the point of no return. There wasn’t a feeding tube on the planet that was going to bring her husband back.
The daughter sued the nursing home and her mother to enforce the living will and a judge found in the daughter’s favor. The feeding tube was removed and the patient’s body died, his brain had ceased to function some time earlier.
Do we have such a phobia of death that we will take any and all measures to keep us going, even though eventually we know that those measures will eventually be futile? Cancer patients are called courageous when they take on one treatment after another, no matter how severe the side effects or the objective facts that the treatments are more likely to shorten, not prolong, life while degrading the quality of what life is left. Is that courage or simply denial and desperation to avoid death?
Our willingness to go the extra medical mile to try to avoid the inevitable is the subject of a piece written for The Guardian, a newspaper in the United Kingdom. Although I think the author’s view is a little too dark for me, it’s worth reading and thinking about.
My mother-in-law died some years ago. She survived breast cancer and a heart attack, but after a series of strokes she was severely debilitated. Betty worked in hospitals for a number of years and later in life saw many friends meet their ends. An end connected to machines and tubes was not something Betty wanted and she decided that was not for her.
Her strokes impacted her ability to swallow and she didn’t want a feeding tube, even though she knew it would hasten her death, but it was the kind of death she preferred. Betty didn’t run and hide from death. She knew it was coming and faced it on her own terms. If that’s not courage, what is?
When we talk about patients being courageous, I think it’s the Bettys of the world who need recognition. As much as we don’t want to admit “defeat” to a disease like cancer, how is ending our lives pumped full of pharmaceuticals that provide us little benefit and hooked up to machines that may keep one organ or another functioning for a limited time a “win”?