Death scares most of us. It is something we don’t talk about at parties or even with those closest to us, unless absolutely necessary.
This past week, we met some patients with ALS, Amyotrophic Lateral Sclerosis or more commonly known a Lou Gehrig’s Disease. Survival rates from disease onset to death is about three to five years, ALS is a terminal diagnosis with no known cure and few effective treatments.
I first noticed the avoidance of the subject by talking about quality of life. We discussed considerations as the disease progressed– did the patient want a feeding tube? A breathing tube? What were the measures of life that the patient wanted in order to live life as fully as possible? Implicitly, once past the effective quality of life for the patient, then treatment would transition to palliative and end of life care.
But this is an oblique discussion of death. We know it’s looming, it blots out the sun and we are noticing it’s harder to read our books– but we talk about turning on the lights rather than discussing the celestial event occurring overhead.
We cognitively know that death is coming for us all, it’s not really a surprise, but we consciously avoid the subject so much that we create this enormous blind spot for the final act and chapter of our lives. Allowing this taboo to rule our interactions means that we pack these conversations as death approaches or after the fact, neither of which allows much depth because of the emotional weight involved– impending death takes our sober decision-making away from us.
After talking with the patients, who were amazing and thoughtful and full of grace, we debriefed with their treating physician, who specializes in ALS.
I asked her if worrying with terminally ill patients had affected her own sense of mortality. She was caught a bit off guard– understandably so. She tactfully deflected the question by explaining her avoidance of pediatric intensive care units since having children because they remind her too much of her own.
This talks about death, but only the fear and shadow of it. She mentions dying but only in relation to her children, not her own passing. Not her own acceptance of death.
I struggle with the taboo of death because I find so few people willing to discuss it. Much like sexuality, we have many ideas and thoughts on the subject, but we are too uncomfortable to hold a lively and open discussion with others.
Working with terminally ill patients, I believe it imperative that one finds comfort in their own mortality. After all, we wouldn’t want a yoga instructor that doesn’t practice yoga. If we expect to guide patients from diagnosis to accepting their eventual passing, we need to do this within ourselves first. It is difficult to teach others what we cannot or have not done ourselves.
One of the patients told me that I pulled the tarp off the gorilla in the room. To me, that is as necessary as a surgeon cutting flesh in order to heal the person. I’m finding everyday that my spiritual and emotional development is as important to my future healing practice as my technical knowledge, if not more so.
For this reason, I find myself drawn to palliative and end of life care. These are discussions I have with myself during quiet reflection. These are discussions that would immensely help patients deal with their final transitions. Hope is an essential ingredient in a physician’s toolbox, but battling death can only succeed for so long.