Society is in denial about death, especially in the context of medical care. People visit their doctors for cures. Few expect to be told there is no fix, let alone that their illness will lead to their deaths. Medical education reflects that same social discourse. Though I frequently provide care to dying patients, my medical education was silent on death.
Physicians are products of the social world and often share the same biases and values inherent to our society. The fact that doctors are not especially good at talking about death and dying shouldn’t be a surprise, because we ultimately reflect the same cultural discomfort with end-of-life issues.
In providing care to dying patients, my duty as a physician should include sharing my professional opinion about prognoses in ways that are emotionally responsive and accessible. In a recent case I had with the Lee family (name has been changed), I felt I hadn’t fulfilled those responsibilities.
Mr. Lee was admitted for out-of-control congestive heart failure and end-stage kidney failure. He arrived short of breath because of lots of fluid in his lungs, and he was unconscious because of the accumulation of toxins due to his kidney failure. With a poorly pumping heart and kidneys that could no longer produce urine, there was little left that medicine could provide in the way of cure. I assessed that he was within days of death.
I shared my prognosis with Mr. Lee’s son and daughter, both designated as his substitution decision makers. Despite my assessment, the Lee family said that their goal was to have Mr. Lee’s illnesses “fixed in hospital.” The family began resisting any further conversations about end-of-life care. In retrospect, my manner of speaking was too cold to form a supportive therapeutic relationship with the family, and the language I used so couched in medical jargon that the harsh realities of his illnesses were difficult to understand. I asked the following on Twitter:
Death is an existential reality fraught with deep, unanswerable questions, emotions and pain. It can’t be dissected in anatomy labs. It’s not like learning the pathophysiology, diagnostic criteria and clinical management of congestive heart failure.
Most of my medical training underscores the value of the objective, detached physician. That form of clinical practice is an act of self preservation and enables me to provide clinical care to a large number of people under pressure. The same practice among physicians can be a potentially precarious path to minimizing the emotional burdens of disease, an aspect especially problematic in providing end-of-life care to patients and their families.
Understanding end-of-life issues require physicians to engage with emotion and with death, which we, as a society, have difficulty confronting. The arts provide a largely untapped resource in medical education to explore the clinical aspects of pain and suffering. In At the Will of the Body, Arthur W. Frank’s poignant memoir, he accounts the emotional burdens associated with illness through having a heart attack followed by cancer. Physician-poet John Stone’s pieces, such as “Death” and “Healing,” invoke the visceral pain associated with quintessential human experiences of loss and disease. Artist Frida Kahlo’s “The Broken Column” is among my favourites. In that painting, she depicts her intense experiences with chronic pain, an outcome of a devastating bus accident.
Writers and artists often dare to examine those things that we, as a society, turn away from: death, dying, pain, and suffering. That physicians can frequently be unhelpful in the ways in which they approach end-of-life issues reflects, at least in part, our broader cultural struggles with death and dying. If we change the way physicians engage with emotional suffering by using the arts within medical education, the social discourse of denial may shift towards a willingness to grapple with the pragmatic realities of being human.