Meditations on Death and Dying

Modern medicine is truly miraculous! The advances of science, even just in my rather short lifetime, are astounding. The fact that we prevent and even reverse disease on a cellular level is incredible! I’ll admit, much of medicine is still more of an art than a science (how does Tylenol even work?) and sometimes I feel more like a witch doctor than a modern doctor-in-training when I say the magic words (“So what brings you in today?”) and end up with a patient who tells me they feel better solely because they've had a chance to chat with me. For all our advances, however, we have yet to achieve immortality.

The American conceptualization of death and dying often seems to start from the assumption that life is the natural and default state and every deviation from that state is an unnatural tragedy, one that must be managed away at any cost. If someone has trouble breathing with an oxygen mask, we intubate them. If someone has difficulty swallowing, we give them a feeding tube. If someone is disoriented and agitated from the interventions, we sedate them. For some patients, these interventions are irreversible and represent the start (or continuation) of an escalating cascade of interventions. We focus on quantity of life over quality of life.

In navigating conversations around death and dying with my loved ones and patients alike, I find it helpful to reorient our philosophy of the default state. I would argue that the default state is actually death and every day that we counter that state is a miracle of astounding proportions. When someone dies, it is not a reflection of a failure on our parts as family, friends, or physicians. Rather, it is an acknowledgment that in many ways nature’s force is unrelenting and our human hubris can only compensate for so long.

On Monday I will be driving to sit by the soon-to-be death bed of my grandmother. When I saw her last summer she was diminished but still herself. She cracked sly jokes, snuck her favorite food off my plate, and proudly announced to everyone at the nursing home that I was starting medical school. Her decline in recent months has been rapid, partially reflective of a concept in medicine called Terminal Drop (or Terminal Decline, depending on the scholars you prefer. See MacDonald et al. 2011 for a comparison of these theories.) Often when an elderly person dies, it is not a surprise. The specific timing may be unknowable before hand but the fact that they are dying is not a surprise. After they pass, you can look back and generally identify an inciting event or point in the past five years that marked the beginning of their more rapid phase of decline. In some it’s a fall, in others an infection, and for a small subset it’s the loss of a spouse.

Even only a year into medical school, I sometimes feel cursed with knowledge. It hits you at all sorts of random points: the humorous (knowing exactly what sorts of activities might wind someone up in the emergency department because of an unidentified object lost in the rectal cavity) and the heartbreaking (understanding that the unhoused patient, who has lost significant amounts of weight and refuses to be seen by a specialist for the positive cancer markers on their last blood draw, may never come back to see you again). Amongst my own family and friends, my knowledge has provided a basis for new intimacy. I get sent screenshots of test results and asked to explain how, exactly, diabetes develops. But, it also means that when my aunt tells me that my 92-year-old grandmother has stopped swallowing, I know the inevitability that follows. I recognize that forcing her to eat is, in fact, detrimental to the process of death which is, itself, hard work.

Those of you who have lost someone who entered hospice or palliative care may have experienced the uncanny way health care professionals in that line of work seem to predict death, calling the family back to sit by the bedside just in the nick of time. For all that life is a miracle and a mystery, death is rather straightforward. Eventually, one by one, the body’s systems stop. When we talk about dignity in death and dying, recognizing this natural progression is a key part of the puzzle. If your loved one's first step is loss of appetite, then forcing them to eat simply prolongs their discomfort. 

When we have conversations about end of life care, whether with loved ones about our own wishes or theirs, recognizing the points of no return can help orient our choices about interventions. And remembering that none of these decisions are set in stone (although we should hesitate to change them without the consent of the person dying!) can often provide us with the moral and emotional coverage necessary to make weighty decisions. It is never too late to have these conversations, but you will likely find them harder to have the longer you wait.