When asked during a recent ICU rotation if I was considering critical care as a subspecialty, I offended more than one person with my response: “No, I really don’t enjoy torturing old people.” Granted, that unfiltered comment came at the end of a long and sleepless 28-hour shift, but the sentiment holds true.
As doctors, we have a number of tools to assess quality of life in research. We use fancy phrases like “neurologically intact” to describe a survival outcome that we might be interested in: a life worth living. Sadly, though, these signifiers are all assigned retrospectively. No one comes to you when you are admitted to the ICU to ask what constitutes a life worth living in your world.
Too often, we as physicians come to see death as a failure. We see return of spontaneous circulation as a success even when we know the patient won’t walk out of the hospital. We sometimes see crashing patients as a challenge, and when we lose the war with their disease, this can feel like a failure on our part. The truth is that sometimes we are unable to resuscitate a patient, and other times we should not. When the best possible outcome is a quality of life that would be considered unacceptable to our patient, our obligation shifts dramatically to something we are much less comfortable with than running a resuscitation.
Physicians are almost always overworked these days, and it’s difficult to take a detour from our normal course to ask these high-stakes questions. It’s true that even something as simple as semantics affect decisions around end of life care. Health care professionals receive a dearth of training and education regarding end of life care and the associated conversations. Unfortunately, we often ask if patients and families would like us to do everything, therefore setting them up to say yes. By simply rephrasing the question, we allow them to consider other responses. When we hear “full code,” the default in our culture, we immediately spring into action performing the sometimes life-saving and always unpleasant procedures that constitute doing everything.
When a physician, him or herself, is facing a terminal disease, however, they very rarely pursue the default full court press. Because we know the truth. Because we know the odds. And because we know what the other side looks like. Because we’d rather have six beautiful months at home with our families than spend 9 or 12 months suffering in the hospital. Because we’ve seen both the beauty of life and the reality of critical illness and dying in the hospital.
When I was a 29-year-old intern, my father died. As a daughter who gut-wrenchingly advocated for comfort care, I struggled mightily as we watched him deteriorate. It was awful. It was heartbreaking and earth shattering and soul sucking in every way. Even I, the emergency physician who knew we were doing the right thing, had second thoughts and considered what it would mean to abandon our hospice plan. Even when his failing body wouldn’t allow him to eat or walk or talk, when his failing mind could offer only a loving smile of recognition, I still considered rushing back to the hospital to throw in the central line and give the antibiotics and fluid. Because death is hard. Let me say that again. Death is ugly, and it is hard. When we lose someone we love, there is nothing remotely okay about that. It is an upsetting and tragic thing to go through. There is, however, no magical medical pill to make losing someone hurt less. It will hurt, and it has to, because you love them.
All too often end of life care becomes about those who are living and not about he or she who is dying. We hurt, and we fear, and we want to continue to have our loved one in our lives. What we have to remind ourselves of, over and over again, though, is that it’s not about us, it’s about our loved one. And as a physician, it is about our patient. Does he or she want to live bed-bound in a nursing home with a feeding tube and a diaper? For some patients, the answer is yes, but for others it is a resounding no. As a culture, we have come to (mistakenly, I would argue) believe that “life” in terms of cardiopulmonary function trumps quality of life. While I’ll spare you the philosophical debate about what constitutes life, the point is that we have to ask this question of the person whose life is at stake.
Death sucks. I have to reiterate that one last time because when I lost my father to an illness that I knew would take him, I thought I was prepared. But it turns out that nothing can prepare you for that type of hurt. Whether expected or not, fast or slow, losing someone you love hurts with an unimaginable intensity. But we can honor these people in death the way that we honored them in life: by loving them unconditionally and helping support their wishes and their values.
When I chose a career in medicine, it was because of the grand idea that I could save people. Sometimes I can, and those are the glorious days that make me cry happy tears and call my family to proudly share the success. Sometimes, however, I cannot save my patient’s body. But I can save them from me, from the system, and from a culture that often forgets them. And on those days, when I help a patient die with dignity and grace on their terms, I feel damn near as satisfied as when I “save” a life.
Angela Jarman is an emergency medicine physician and can be reached on Twitter @DocJarman.
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