People say that physicians can play God. The same might be said of a health care proxy who must make decisions on behalf of someone who is no longer able to do this for him or herself. As I have watched my husband assume the role of health care proxy for his father, I am profoundly struck by just how intensely human a role this is.
We agreed that it made sense for my mother in law, who has been married to my father in law for not yet three years, to switch this job to my husband. She stated that she knows herself well enough to realize that this delicate position would be too difficult to manage when the time came to invoke it.
My father in law, a once dynamic, charismatic man who commanded a room with his booming voice, colorful language and keen intellect, has slowly left us as his kidneys no longer clean his blood effectively, leaving his thinking and memory more foggy. He started dialysis too late for it to really maintain his health, thus it has put a brake on his decline, but at this point the slide is more rapid, gaining ground every day on his once decisive and knife edged clarity. At times he retreats to meetings from his position with the United Nations in various countries, and further back to his stint in the Navy where he made powerful connections with people who remain loyal to him still.
Although he has been time traveling, (and recently added a son to his actual two) he had been able to answer questions about what he wants with greater coherence, and even at the time when he fell and broke his neck was deemed legally competent much to our dismay as he was insisting he was fine to go home. It took a gentle, direct conversation with my husband to convince him that he was too ill, and his love for his wife was too great to put them both at risk at home.
It has been this disconnect between his actual state of health and how he perceives it that has been the most challenging to manage. His physical decline although so sad, would be simpler if he were able to recognize it and plan accordingly. Although very sweet and sometimes touching that he still suggests we go out to dinner when we visit him at his facility, he eats almost nothing and can barely stand. It is painful because he doesn’t understand our quiet, persistent refusal.
After three professionals from three separate facilities suggested we consider ceasing dialysis and setting up hospice, we had to seriously consider it. This would mean a gentle slide into unconsciousness and a pain free death, the type of end that many people would prefer. It has become a matter of interpretation of his former wish to not be kept alive by extraordinary measures and his more recent proclamations that he is not ready to die. He had stated that he did not want his last days to be like that of his father who had suffered strokes and was alive for two years following that. Would there be a point he would articulate a readiness to die? At what point will dialysis feel like an extraordinary measure? Without an an explicit conversation about this, my husband has elected to continue dialysis for now. As my father in law’s pain from various injuries continues to cause him discomfort, his weight loss leaves him more vulnerable, and his connection with reality more tenuous, there may be a point at which dialysis seems like an extra burden, or cruelty.
For now, we struggle with the extraordinarily human challenge of trying to honor the wishes of a man we love, without clear direction from him. We can only hope that we are doing right by him, and trust that he will be able to give us a signal, if nonverbal, of his readiness to say his final farewells. We must remember to have these conversations with each other, and document them, so that we might provide guidance when our time comes to make this most important and inevitable transition.
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