My thoughts on this issue are very much influenced by a book called "How We Die" by Sherwin Nuland. We like to feel that we are in control of our lives. We set goals and standards and in modern times, we have decided that we will die with dignity and we have thus set ourselves yet another goal that may be impossible to achieve.
It's not that we shouldn't expect to be treated with dignity but we don't know how or when our life will end. Yes, we might slip away in our sleep or in comfort, supported by Hospice care and surrounded by loving family or friends. My mother died at home in the presence of a Hospice nurse, my husband, and me after a battle with cancer, her pain under control. My father died in intensive care with me holding his hand until he died, after his third heart attack. I let go of his hand while resuscitation efforts were being made. Although those efforts hadn't a chance in working because so much of his heart had died, he wanted to go out fighting and he did.
Were those deaths with dignity? I think it's about as good as it gets although some might disagree. Perhaps some people would be upset at having to receive personal care from nurse's aides and from me although I feel very strongly that we should all accept care with grace. We have all needed care and we have all given it and we will need it once again. This is part of life and I never resented caring for my mother. I was glad to do it.
Some might feel that my father did not die with dignity because he had tubes and was on a breathing machine. I disagree because he was made comfortable and he knew that no one wanted him to go and we were all fighting with him. These things were part of that.
Many people are afraid of being left bedridden, unable to speak, mentally impaired in some way because of resuscitation efforts attempted when it would have been best to let the dying process proceed. None of us want this for ourselves. But here's the thing.... modern medicine has enabled us to live longer and in greater health than ever before. How can we always know when it's time to stop using it? Certainly with my mother it would have been ridiculous to try to resuscitate her and she didn't want that. Someone with end stage HD is likely not to want resuscitation efforts either. But it is not always so clear.
My mother in law had HD and shortly after she went to a nursing home, she had trouble swallowing, lost weight precipitously and slipped into a semi-coma. We made the decision to have a feeding tube put in. We did so because we were not convinced that it was end stage HD. It had happened so quickly and she had also been given a new medication.
I wrote about this online and I remember someone's response was, "Let me get this straight. You allowed her doctor to put a feeding tube in a comatose woman? What is wrong with you?!" As it happens, we made the correct decision. The medicine was discontinued, she regained her weight with tube feedings, and she absolutely astonished the doctor when he came to visit her and she was sitting up and talking. She was able to eat pureed food and the feeding tube was removed. She lived another five years, enjoyed the nursing home and her long time boyfriend took her out for lunch three times a week. But we could have been very wrong and our critic correct and I imagine that we would have felt pretty guilty if she had remained in that semi-coma for a long period of time without the quality of life we were hoping for. It would not have been what people call death with dignity.
It's a trade off. We call on medical intervention to prolong our lives because we enjoy them and we want to go on living them. That necessitates a risk that we will do so when prolonging our life will not result in renewed health or a quality of life despite a chronic illness. For me, the risk is worth it. And honestly, the older I get the less I worry about my dignity anyway. I am going to dance like nobody is watching and grab onto life as long as I can. If I go out surrounded by tubes and machines, well at least someone was hoping to have me here a little longer. If I have a stroke and don't have any awareness any more than I won't know what's happening anyway.