I cared for my mother in the last five years of her terminal battle with Parkinson’s, and for my father-in-law in his 14 year battle with kidney failure and Lewy body dementia. Both died at home in hospice care. Looking back, my mother probably should have died about a year earlier than she did, and my father-in-law, perhaps as much as a decade earlier. But hindsight is always 20/20. It is only possible for me to see how their life was extended now that it is over.

Up until the week both of them died, everybody involved, doctors included, believed they both had months to years to live. Thar the extension of their lives passed a point that many 3rd party observers would call reasonable suffering was partially due to them and their desire to keep living. They didn’t believe that limited mobility or diets mainly of ice cream was considered suffering. As their worlds and capacities diminished, so did their standards and expectations, meaning they still believe they lived a pretty good life until the end.

I also observed that once the family broached the hospice topic, doctors were enthusiastic and supportive. The doctors were reluctant to bring it up on their own. I can only guess this was because of a fear of upsetting the family and the patients, and perhaps a perception of malpractice.

Both were very frail with limited faculties at the end. It was clear when both of them died that it was time. If they had died sooner of sudden natural causes or chosen assisted suicide, my grief would probably be different. I remember them both as sick and suffering, so the pain of them passing was very much diminished. If my memories of them stopped abruptly when they were in their prime, I expect I would have stronger and different grief.

Options to extend life can bring pain and suffering, but also hope to the patients. Options to end life sooner can bring pain and suffering but also hope to the family members and other survivors, albeit usually in different ways.

This problem persists because it is truly a difficult problem.