In 2005 my dad, a WWII vet, was 80 and had already gone through a stroke, a heart attack, a quadruple bypass and had developed diverticulitis and was very ill. He’d also had some cognitive issues and there is apparently a connection between bypass surgery and dementia which may be caused by lack of oxygen to the brain. In any event, my parents came to stay with me so the family would be together during this time. He already had a very specific Living Will and a DNR order in place as my mom was a registered nurse, specializing in cardiac care, and they were both well aware of end-of-life issues. He had clearly stated that he didn’t want a feeding tube and most other interventions. Despite this, the hospital fed him, and he aspirated, which caused him to have pneumonia on top of his other conditions. The family visited him during the day and went home to rest at night. One night close to midnight we received a call from an astute nurse at the hospital who told us that my dad’s assigned doctor had ordered her to install a hyperalimentation line into a vein in his neck to allow them to provide nutrition. Because my father had not stated that he didn’t want this specific intervention, the doctor wanted it put in. We all rushed over to the hospital and confronted the doctor. She defended her actions, saying she had taken the Hippocratic Oath and had to intervene. We immediately fired her and waited at the hospital to meet with a social worker who could get our father transferred into hospice care, which they did the next day. My father was a proud man and we were all determined to let him go the way he wanted to go. He lived three more days and died peacefully.
Four years later, when my mother was facing similar situations, things had changed, and the question “what’s her quality of life?” was acceptable and it has become OK to talk about it. I have learned a few things from these experiences. One is that having all the appropriate paperwork in place doesn’t mean that the right thing will be done. Also, while usually the person’s spouse is designated as the healthcare proxy, this might not be the best choice. Usually the children end up making the tough decisions, and that can also lead to conflict as siblings may disagree, especially if their religious beliefs conflict. That said, my parents had all of their legal documents in order, all funeral arrangements done and prepaid, and we made sure they would be legal in every state they were likely to travel to, something people don’t always think about.