On the Manner of Death, Part II

With my mother we were caught off-guard. Caught between intractable abdominal pain and her risky status as a bad surgery candidate, surgery was eventually decided upon in something like the 10th day at the hospital after another painful episode. The surgery was very hard on her and then suddenly in an afternoon she was drowning from fluid in her lungs - the resident asked me about the respirator and I said yes - but the explanation was in the context of: this is temporary and will help. So, in my mind I had defined this as: therapeutic respirator; but I think personnaly I was just not ready to see her go! Then she was stuck on the respirator in the ICU and it was a week of politicking via chaplain's office before I could get her off of it; but a week of working through my own feelings and thoughts about her directives; then she died right away after removing the respirator. With time, I have become less hostile-feeling now about this experience and more thoughtful about my own lack of readiness as a caregiver to manage my mother's death.

With father it was a progressively more confusing picture as the diagnosis progressed from heart attack to sepsis. He went into afib late the 2nd night in ICU & they were able to bring him out of it (eventually) using IV drugs, amidst almost constant checking with me about his directives amidst the urgency of treating him. I decided a medical cardioversion would be permissible, but shock with paddles if he went out would not. A less sophisticated person would not have been able to make this choice. They were pressing me for a bronchoscopy to diagnose his infection, but I temporized, having learned the year before that this would surely have led to his being on a respirator. The morning he died they brought news to him that he had pneumonia, and I could see in his eyes the psychological blow that this news had for him - oh GOD, not another 6 months in rehab! Hank and I had a conversation in which he was able to express how very tired (of the whole thing) he was. Later that morning the team wanted to know what to do - I took the Fellow aside and with her I had a very good conversation about his age, quality of life after pneumonia, and how I didn't want to torture him with horrible procedures. She was very understanding, and they called in Palliative Care. Without medical support and with the (Palliative Care) nurse's permission (!!) he left pretty quickly.

I think we are given an inadequate context and language for making these decisions. The official forms deal with the situation of being in a vegetative state - or, resuscitation after having died already - but this leaves absent the patient's wishes for things like horribly uncomfortable diagnostic tests vs. age vs. likelihood of continuing life in something approaching happiness. So, we need a 7 - point scale that lets people indicate the level of aggressive or palliative treatment they will want, based on ICU scenarios and not nursing home scenarios.

With directives from both parents, I understood that if in a vegetative state they wished not to be fed, and not to be on a respirator indefinitely. Unfortunately, both parents were lucid, not vegetative, the scenarios were acute care with death as the consequence, and I had to kind of make things up as events unfolded. As a caregiver without directives that matched the scenario, I had to mediate internally my own conflicting feelings about my parents, some of those feelings lingering from past history ( EVERY child will wish their parents gone at some point!), and my status as an adult manager of my parents, and factor in emotional vs. objective criteria. NOT an easy process. No wonder this rips families apart.

In perspective, both of my parents died violent medical deaths. My wife's parents died in peaceful settings surrounded by family and soft music.

Why?

I am still asking this question.