How to Die: End of Life Discussions in the American Conscience
by Mariam Gomaa
The first time someone asked me how I would like to die, I was in middle school. Terri Schiavo had become part of the national conversation, and when she passed away in hospice care, my family sat in our living room watching the evening news and talked about our own deaths.
We were no strangers to these conversations. In fact, we were used to matter-of-fact discussions about dying. As a family, we had faced these issues when my younger brother was born with several significant terminal medical conditions that left my parents shuffling between hospitals across the east coast for years.
As a fourth year medical student, I am more appreciative of this conversation and the relative ease with which my family brought forth the topic of life sustaining measures. Having spent the last month working in the trauma ICU, I am increasingly aware that most families do not articulate their wishes surrounding end of life care to one another, and perhaps more interestingly, that patients are easily swayed to change their minds when the time comes. In that moment it is difficult to admit to your family that there is little else in your life to look forward to, including them.
Every day in the TICU felt like a reminder of things I should probably never do if I want to stay out of the hospital: do not ride a car or a motorcycle or an ATV; do not dive into a pool; do not trip and fall into a hole; do not climb a ladder; do not bike on the road; do not eat at CookOut…
The results I saw were, of course, the most catastrophic: quadriplegia, diffuse axonal injury, non-survivable head injuries, sequelae leading to end organ damage. Yet most families wanted to continue with care, however futile.
In that moment it is difficult to admit to your family that there is little else in your life to look forward to, including them.
As we spoke to patients and their families, I noticed that we often were transparent in directing our patients toward what we believed to be appropriate, including the choice to withdraw care or pursue hospice, which resonated with most of us and was often what we would choose as individuals.
I could delve into the fact that physicians tend to say we would not pursue aggressive treatment at the end of life, but we know this. This has been a topic of conversation in many physician narratives. Likewise, there has been many a discussion on the fine line between encouraging end of life care and physician assisted suicide. What I am more curious about is how we can ensure that conversations around death and dying become a societal norm.
Is it unreasonable to think that we should talk about death and dying as children instead?
As physicians we often tell our patients to have these discussions with their loved ones, but we tend to emphasize this for older individuals. What if we started at younger ages, the way my family had our exchange on life and death so many years ago. Is it unreasonable to think that we should talk about death and dying as children instead? I don’t think so. It may, in fact, be beneficial for us as a society to explore coping mechanisms and frank discussions around end of life as we grow into adulthood, so that we are less taken aback when we need to address these matters as caregivers, patients, and health care providers.
To this day, my family’s discussion on life and death remains one of my most vivid memories, a moment of seriousness, reflection and wisdom that I have carried with me on my journey in becoming a physician, knowing one day it will serve me when I am alone in a hospital with a patient who is struggling with the very same question. ◇
Mariam is an MD candidate at Wake Forest University School of Medicine and 2018–2019 Doximity Author.
She is the author of Between the Shadow & the Soul , a forthcoming book of poetry from Backbone Press. Her writing and photography are featured in The New York Times, TIME, NBC (forthcoming), BBC Radio, Routledge Publishing, xoJane and Graze Literary Magazine, among other publications.
