I was twenty five years old when I watched my father die. The cancer had spread through his body and into his brain. Things had been looking good for a while. My entire family, including my father, insisted that I not come home from law school. And then, seemingly out of nowhere, he started to get very confused. My mom and my brother still told me to stay at school. I called my uncle, the only medical doctor in my family, and he told me it was time to come home. I booked a ticket from Boston to Chicago and came home the next day. When I arrived at the hospital my father was happy to see me, he asked me if I had come straight from court to see him (I hadn't, as I was still in law school), and then he closed his eyes and went to sleep. Those confused words were some of the last words he ever said. The next day he was intubated and moved to the intensive care unit. Food was forced into his stomach with a tube. Air was forced into his lungs with a tube. There were so many tubes. After five excruciating days in the ICU, he finally passed. It was an undignified end for a very dignified man.
He was agitated. He was uncomfortable. He couldn't speak, but it was clear that he was in pain. I watched my mom and my grandparents praying for a miracle. Praying that he would get better. And I found myself, racked with guilt, praying that it would end and that he would find mercy in death. Because everyone in my family didn't want to give up, and wanted to hold out for a miracle, my father spent nearly a week in the ICU - intubated, clearly agitated, and unable to communicate - before he passed.
It didn't have to be that way. He didn't have to suffer. The doctors made it clear, the day they moved him to the ICU, that there was no coming back. However, there is a very stark disconnect between our desire to "do all that we possibly can" and our desire to provide our loved ones with a comfortable and dignified passing.
When I look back on my experience, There were so many things wrong. 1. I shouldn’t have had to feel guilty about wishing for a merciful ending for my father. 2. The rest of my family should have been clearly informed of the reality, that there was virtually a zero percent chance of the miracle they were praying for, and that to keep someone alive with such low quality of life is cruel.
Healthcare professionals understand this themselves, and as such, they are much less likely to opt for life saving interventions than members of the general public. There is a fantastic episode of RadioLab that covers this exact subject (http://www.radiolab.org/story/262588-bitter-end/).
I would like to design a standardized training program for doctors, nurses, and hospital social workers to teach them how to better explain end of life choices to patients and their families. It would be data-driven, and designed to gently and compassionately bring the decisions of patients and their families more in line with the decisions of experts in the realm of life saving interventions, without making them feel guilty about their decision.