I tend to overweight quality of life concerns when assessing medical interventions. I was thus surprised a few days ago to have a hospice patient tell me he hates the term “quality of life”. As I listened further, I surmised that he wasn’t telling me that he would always prioritize sustaining life over comfort. Rather, it appeared that he had been robbed of his agency and that others had prioritized quality of life for him. He specifically mentioned doctors who had recommended he not continue with chemotherapy. I got the impression that this patient would prefer to have battled his cancer longer, or at least have been allowed to decide for himself when to stop treatment. I don’t know how this patient ended up in a hospice, but at that moment, he resented being there and I had no good response.

I often tell the story of my mother who was in and out of Mass General Hospital and subjected to numerous tests and treatments in her last months, simply because doctors recommended them. She could have had a more comfortable ending. Yet, I also do not know if that is what she wanted. My mother never discussed how she wanted to be treated or created an Advance Care Plan. If we don’t want others to decide for us, it’s essential that we make our wishes known, ideally with a detailed Advance Care Plan, but at the very least, by having The Conversation with our loved ones.