My father passed away at home on Friday July 5. He died at peace, without pain and surrounded by family. He always had a horror of institutionalization, and I am grateful that I was able to help him have a good death. I am especially grateful to Sangre de Cristo Hospice, who managed his pain and supported my mother with compassion and competence.
Both birth and death are over-medicalized in our country. You have to be assertive if you want these events to be a part of life, rather than become a source of medical procedures to be performed. My Dad's prostate cancer had been in remission for 16 years. When the source of his back pain was identified as bone metastases, he tried to make it clear to his oncologist that he did not want aggressive therapy, but only to die without suffering and without making his family suffer.
The oncologist talked him into a course of Lupron therapy (a testosterone antagonist), even though his testosterone levels were negligible. Lupron has fairly mild side effects compared to cytotoxic therapy. One of these is bone loss. So in addition to Lupron therapy, another procedure is added (phosphonate therapy), to minimize bone weakness. Phosphonates act as T-cell activators and often cause flu-like symptoms. My dad then spent 3 of his last 40 days in bed with fever, aches and nausea in order to mitigate the side effects of a therapy that had no chance of improving his life. Because that is the procedure. And performing procedures is what doctors do.
Nor did the oncologist consider the impact of asking a sick 84 year old man with severe back pain and COPD to come in to his office once a week or so. He seemed genuinely surprised to learn that this constituted any sort of hardship. It was only with reluctance that he agreed that hospice care was the best choice for my father.
I was not asking his permission, as I have spent too much time around doctors to be overly impressed by them. However for many patients, especially of my parents generation, acquiescence with no questions asked is the norm. This may be the most convenient arrangement for doctors, but it is essentially BS, and the sooner it changes the better off we all will be.
Posted with Blogsy
I am sorry for your loss. I'm glad your father made known his desires for how he wanted to spend the end of his life, and that you were able to help acheive that.
ReplyDeleteThank you for writing this. At the moment, it serves to fortify my own resolve, and in the future, I know it will be a helpful tool because I will be able to show it to others.
Here's why:
Sometimes being the only person who has experience working in health care means that you have knowledge that is not common, but is helpful to the patient (whether that be you or a loved one).
In your post, you mention an example of the "insider" knowledge that I'm referring to, specifically that (most) doctors are not infallible, although they think they are. This makes them dangerous, especially when not just older generations but all generations of people tend to (without thought) agree with the idea that the doctor is right (how dare you question me!)
I think it has more to do with a person's personality than the generation he or she grew up in, and most people are unlikely to "make waves" in unfamiliar situations, like being in a hospital.
Doctors - like car salesmen - do what they do every day, and the confidence that comes with such practice can make it difficult to think of or ask questions. We buy a car only a few times in our lives.
Unfortunately, with doctors, we are talking about decisions that affect every aspect of a person's life, including the length of it. A mistake in this unfamiliar situation affects much more than our wallet, especially when the doctor doesn't realize he's prone to the same biases that affect everyone else. (And especially when the doctor's motivation for becoming a doctor wasn't to help people, so his commitment to actually doing so is likely questionable from the beginning. I'm just saying...)
Being that most people don't like to question the status quo, for the minority of us that do, we can sometimes be silenced by the majority who think it is somehow rude or taboo to do so.
That's why I will be using what you have written in the future, so when I myself question authority - unless I am fortunate enough not to have to - I won't be the only one, since I'll have you on my side.
Thanks!