Getting somewhat personal

Davison and Simpson, from the Great White North, were able to dodge the flying hockey pucks long enough to do this good qualitative study on advance care planning -- in this case, specifically, for people with end stage renal disease, but the implications are certainly more general.

Health care providers are often reluctant to discuss prognosis with terminally ill people, or to initiate discussions about preferences for care, including terminating futile treatment and do not resucitate orders, well in advance of the time when such decisions will likely be needed. They fear provoking despair in their patients, or other adverse reactions.

Davison and Simpson found that this group of patients generally did want to have these discussions, and that talking about and planning for what was likely to lie ahead actually gave them hope -- not for a miraculous cure, but for more meaningful life and fewer difficulties and troubles in the time they had left.

I feel comfortable with what I am about to say because there is no danger my mother will read this blog - she is unredeemably Internetophobic. As I have vaguely suggested previously, my father has a progressive dementia, which I am pretty sure is Alzheimer's disease superimposed on stroke damage and vascular dementia, although for reasons of her own my parents' neurologist likes to tell them that he does not have Alzheimer's disease, but only vascular dementia. She's the expert, but since he has all the symptoms of Alzheimer's disease, it's hard to figure out how she comes to that conclusion. My mother insists on it, however. For example, she said to me, "People with Alzheimer's disease put the car keys in the refrigerator." It's true that my father never specifically did that. Actually, he doesn't have any car keys because at least we convinced her to stop letting him drive a while ago. However, he puts plenty of other things in strange places, for example putting his pension check in the knife box on the sideboard. For an unconscionably long time, my mother clung to this diagnostic quibble to believe that my father's condition would stabilize.

It did not. His care needs and personality changes are putting her under sometimes debilitating stress. Among other symptoms, he has progressive aphasia and it is already becoming difficult for him to communicate at all. My mother really needs help taking care of him at home, and soon it will be impossible for her, I'm sure. He will need institutional care at some point, I would say within a year at the outside. And then she will have to make decisions about how aggressively to provide medical treatment, since he will begin to develop repeated and chronic infections, probably have additional strokes, and so on.

Well, it just hasn't been possible to get her to start to think about these problems, to learn about options, and to make concrete plans. When I even start to hint at the subject, she deflects it. I would say that it is the neurologist's job to be frank with her, to say, "This is what is likely to happen, and these are the decisions you will need to make," but instead she supports my mother's denial and avoidance. That leaves me with an impossible task, while doing nobody any favors, as far as I'm concerned.

This very painful situation affects more and more families all the time. It is one of the prices we pay for increased longevity. By far the best way to cope with inevitable evils is to understand them, acknowledge them, accept them, talk about them, plan for them. That's where hope lies. Unfortunately, physicians aren't necessarily able and willing to help their patients do that.