Death Denial in America: What’s the Point?

A version of this essay was initially published in the Journal of Health Affairs, existing behind a paywall.

“There is a great deal of pain in life and perhaps the only pain that can be avoided is the pain that comes from trying to avoid pain.” R.D. Laing American Psychiatrist

A wave of grief washes over, and I cry as I use the broom to brush the midges away. Some are in the spiderwebs, some are in the shadows cast on the walls of the outdoor porch. I live beside Lake Erie in Cleveland, Ohio. The water-borne larvae have entered their pupal stage. They do this every Summer, eventually releasing their swarm as flying young adults before settling into various nooks and crannies. Most of the time the grief does not break free and remains compliant. But not infrequently, it coughs itself up. I cry about my kids, my life, and what very well could be—at the age of 45—the end of my health and start of my death.

I know, I know. Each of us is born with an expiration date. No one gets out of here alive. There is nothing certain in life except death and taxes. I hear such platitudes about mortality regularly now, principally from well-meaning people. I hear it from friends and family. I hear it from doctors. “I can walk out of this door tomorrow and get hit by a bus,” said my neurosurgeon the day we met. He was grasping at straws for threads of compassion. “Okay,” I thought. “True.”

A few days later I asked the neurosurgeon how to psychologically approach my probable diagnosis of glioblastoma multiforme, a type of brain cancer nicknamed “the terminator”. He regaled me with some Greek myth about an archery contest whose punchline was, “Aim high.” “Okay,” I thought. What he was insinuating was not to focus on the median life expectancy of 10 months, but rather aim for something akin to 14 years. This, despite the likelihood of that happening being less than one percent.

Even before I caught a trophy illness, I wasn’t one for medical doctors. “Skittish” would be the wrong word. Too benign. “Phobic” was more appropriate. This fear of doctors and their medical procedures does, in fact, have a name, “Iatrophobia.”What was behind my fear of doctors. Death, for one. I’ve had my fair share of run-ins with the Grim Reaper: that ubiquitous hanger-on immortalized in Giovanni Martinelli’s painting “Death Comes to the Banquet Table,” which depicts a skeleton crashing a dinner party to the disgust of the diners. There was a mauling by a Great Dane; a car accident in which my thigh was cut but my father was killed; and a bike/car accident wherein I suffered a subdural hematoma and fractured parietal bone. ( I was on the bike.) And while none of these incidents were caused by doctors, a response was nonetheless conditioned between my amygdala and the presence of doctors, if only because doctors were always there in those most precarious of moments that philosopher Soren Kierkegaard characterized as “fear and trembling.”

As I proceeded through standard of care, however— and my presence became a fixture at the cancer hospital—I was desensitized to the medical milieu, and my phobia of doctors dissipated. This didn’t mean I wasn’t naked and afraid about my brain cancer diagnosis and prognosis. The angst just transitioned from an irrational fear to a rational reality. Or as a fellow patient put it in a Facebook discussion about the “scanxiety” related to the MRI scans that us brain cancer patients must endure every couple or so months, analogizing the experience as akin to “getting the thumbs up or thumbs down from Caeser.” “Off, you, to the lion pit,” you could almost hear the neurooncologist saying “You, head ye back to your habitat.”

Put another way, the intimacy with mortality takes on a whole new meaning when the Grim Reaper’s visitation schedule morphs from one of a nagging reminder to that of a lover. The stink and look of death, then, that accumulates in the terminally ill has real-world ramifications. Not only for the afflicted but also for the caregivers caring for them. See, for instance, the analysis “Existential distress among caregivers or professionals taking care of dying patients.

I remember the initial days after my craniotomy. I was in the Neuro ICU. The in-surgery pathology seemed to confirm the worst: grade 4 astrocytoma. The neurosurgeon hadn’t yet told me the initial pathology results, but his silence was loud enough. It was 3AM, and the neurosurgery residents were doing their rounds. The curtain separating me from them was closed, and as far as they knew I was sleeping. But I wasn’t. I was awake and thinking, listening. The lead resident was looking at my file and telling the others that it was likely glioblastoma. Then in a gossipy, hushed voice he said, “it is terminal.” It wasn’t exactly a surprise but hearing it this way—with me tucked in the darkness on one side of the curtain and them in the light on the other—was ill-fitting. I was close to yelling across the curtain that, “I can hear you.” But I didn’t. What’s the point? The hushedness and tiptoeing around death is as culturally dug-in in America as the roots on an ancient elm.

In his 1963 bestseller The Fire Next Time, James Baldwin writes “perhaps the whole root of our trouble, the human trouble, is that we will sacrifice all the beauty of our lives…in order to deny the fact of death, which is the only fact we have. This cultural suffocation of our naturality will nonetheless find its release, often doing so in the mores, processes, and procedures that guardrail our most bodily of institutions, particularly as they relate to matters of life and death, including the minefield of terminal illness existing in between. This still-born state is where I and thousands of others persist, our voices getting quieter and more horsed as salvage therapy is pumped through our mind and bodies in the hope for life’s elongation. All the while, an ostracization ensues.

In a podcast out of the American Psychoanalytic Institute called “Off the Couch”, the internist and psychoanalyst Linda Emmanuel explained how she began to specialize in the existential concerns of patients. It was an interest seeded in her medical training, wherein she found a clinical need not being tended to. “[I]n medicine writ large, culturally,” Dr. Emmanuel began, “we as providers were very poor at providing people what they needed as they face their death.” “And I found that tremendously distressing on behalf of the patient,” Dr. Emmanuel continued. “And distressing [as a practitioner] because of my own profession being apparently not equipped to be there with people facing their death, unlike any of the other medical events that might befall them where my colleagues are fantastic at being there.”

I find Dr. Emmanuel’s observations consistent with my experience. It is an experience not only informed by being a patient, but also by being a person with graduate training in clinical psychology. You wouldn’t so much find Stephen King on my bookshelf as you would Rollo May’s Meaning of Anxiety and the “Body Keeps the Score by Dr. Bessel van der Kolk. I’d like, though, to return to the topic of clinical efficacy that Dr. Emmanuel touched on above. The caregiver patient dyad is a two-sided coin engraved with a bedside manner on one side and clinical acumen on the other. My neurosurgeon proved to be both steely-nerved and deft at hand, successfully resecting the multifocal tumor that had “destroyed by visual cortex”. The gratitude a patient and their family members feel upon seeing each other after straddling a surgical abyss is immeasurable.

On the day we went over the final pathology report and just before he transferred my care, my neurosurgeon and I discussed what’s next. “You will still be working, right?” the neurosurgeon asked. “Yes, I replied.” (I was a research director in the field of urban affairs.) “But I am also writing through this process,” I continued. The neurosurgeon looked at me puzzlingly. “I understand,” he replied, chagrined. From what I could tell, he didn’t want me to focus too much on death for fear of succumbing to death’s grip. As if staring at the sun will just make you go blind.

My care was then switched over to the radiologist and neurooncologist to continue with the standard of care, which was comprised of debulking surgery, radiotherapy, and adjuvant chemotherapy. None of which are curative. A few weeks into treatment I talked to my neurooncologist about how hard it was balancing in between the fight for life and an acceptance of death. I explained that in order for me to give it my all I had to confront the reality that I had to give it all back. He remarked that “few of his patients take such an “insightful approach”. “I got it,” he went on. “In order to get to one place, you have to go through the another.”

“Yes,” I said. “Yes.”