Quality of Life? According to Whom?

One of the most striking interactions I had as my father’s caregiver was with the neurologist who followed him after his stroke in November 2019.

I had the ‘luck’ of walking into my dad's apartment to find him mid-stroke the Sunday before what was meant to be an 85th birthday party. Lots of people were invited and we had flown in from California. My 11-year-old daughter and I had fetched the cake and were delivering it to his refrigerator for safe keeping. In that moment all plans would change. 911 was called and 10 minutes later he was in a CT scanner which showed a right middle cerebral artery clot. Medication to dissolve the clot was given, a couple of nights in the ICU and then he was on a regular neurology floor. His life was saved. As his health care proxy, I had made that decision. Once it was done, I wondered frequently if I had done the right thing.

He was left NPO, not allowed to eat, due to his swallow muscles not working well. It happened to be Thanksgiving week and we brought him a chocolate turkey from our family gathering. Unaware or, more likely, not caring about doctor’s orders he consumed the whole thing when I stepped out for thirty minutes. The brown dribble on his gown and multicolored tinfoil crumpled on the table the only remaining evidence. He loved things that tasted good. Beautiful tomatoes, a rack of lamb with mint jelly – and chocolate in any form!

The Neurologist called me the Friday after the holiday to explain that he was recommending a feeding tube. It would be temporary – post-stroke being one of the few times a feeding tube would be recommended in someone 85. As I questioned this approach, the need to keep him NPO and sedation or anesthesia – he immediately jumped in to say “I mean he has a good quality of life!”. We hung up soon after and I found myself saying aloud “Good quality of life according to whom?”. Had anyone asked my dad what he wanted? What was most important? He hated the idea of a tube coming out of his belly, even temporarily. He wanted to eat. To savor what he could. To eat as much chocolate as possible now that gaining weight seemed a good outcome. As the daughter who made the decision to save his life, I had visions of him without food for 3 days and then getting sedation for the procedure, becoming delirious or getting an infection – and never making it home. Paranoid perhaps but bad things happen in hospitals to old people. He and I talked about the possibility of getting pneumonia if he just kept eating, and he reminded me of what my grandfather had said years ago. Pneumonia is an old man’s friend. So we nixed the tube and he went to rehab – and never got pneumonia but ate lots of chocolate ice cream. In the end he got six more months of life and explained to everyone he saw that few people get to know their day of death – the day of his stroke was his.