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Being Human: The Preexisting Condition of Disease

Jennifer L. Lycette, MD

Disclosures

October 14, 2021

As a medical oncologist of almost 20 years, I've seen my share of patient-blaming stigma. People are indicted for their cancers in various ways: "They ate too much sugar." "They were obese." "They were a smoker." "It runs in their family."

I find the current culture of attributing severe COVID-19 illness and deaths to "preexisting conditions" to be disturbingly similar. Recording and reporting whether each person who died of COVID-19 had an "underlying condition" stigmatizes the disease.

Disease and illness force us to confront our inherent mortality. Throughout my career, I've had the privilege and burden of guiding people through these conversations.

In oncology, we don't lay blame. Working in cancer care requires letting go of the human need to understand why. Because the vast majority of the time, there is no why. There only is.

But sometimes, we're asked by family members of our patients not to talk of a poor prognosis. As if the illness wouldn't exist if we only didn't speak of it. As if we, the doctors, are speaking it into existence. As if we hold the power in our words to control the outcomes. As if the reality of death would not exist if we would only go along with the family's desire never to verbalize it. As if naming the truth is the only thing that makes it real.

My response is to sit down together with my patient and their family and ask the patient if they would like to talk about their prognosis. The answer is usually yes. More often than not, as I facilitate the discussion, there is great relief on the side of both the patient and family to be talking openly about the thing they feared was taboo.

But sometimes, the lengths to which people will go to avoid talking about the inherent condition of human life — mortality — are extreme.

Why should they listen to me — their oncologist — when there's no shortage of online charlatans to take advantage of their fear? Selling a cure for the fear of death — false hope and denial. Unfortunately, these things don't cure cancer, any more than they cure or prevent COVID-19.

I've come to realize what is underneath it all is our societal inability to accept an integral part of our humanity: vulnerability — to sickness and, ultimately, death.

It strikes me that the conversations I've had on a small scale are now playing out on a large scale in our mortality-denying society.

The culture in the United States is to largely deny death exists as the endpoint of all human life. Instead, the myth is perpetuated that if we "fight" hard enough, we can "beat" it. We have been waging a "war" on cancer for decades. We refer to individuals' "battles" against disease. We exhort loved ones to "not give up."

I wonder what if, instead, we collectively faced the fear. Leaned into empathy. Did everything we could to protect each other — because we accept that we are mortal beings.

Denial is a powerful force and is one of our psyche's defense mechanisms. But it comes at a cost. If we deny our mortality, we don't need to change. We can keep burying our heads in the sand, pretending death doesn't exist.

Death is real. All lives end in death. These are truths, yet our society is built around disavowing them. If we don't talk about death, we can pretend it doesn't exist. And therefore, we crucify the messengers who dare to speak the truth, as exemplified by the attacks on doctors who have spoken at school board meetings.

Because to listen to the doctors would mean those parents have to acknowledge the dangers. The reality that children can die of a disease for which we have, as of yet, very few treatments. It's far easier to vilify the doctors than to acknowledge this truth. To pretend your world, your school, your neighborhood, your community is safe. Because the alternative is too frightening. How would one even get out of bed if one faced this? The reality that you, and your children, are just as much at risk as anyone else. So instead, it's easier to deny you are anything like those others. It's easier to dehumanize them and crucify any messenger who dares to suggest you or your children are the same.

But it's precisely our human condition that makes us realize all life is precious. Yet, this truth cannot exist in a world where those in power create the falsehood that some deaths are more acceptable than others.

These are some of the deceptions perpetuated by "underlying conditions":

  • The deaths of other people's children — but not our own children — are unavoidable.

  • The deaths of people with chronic illness are acceptable — as long as it doesn't happen to us or our loved ones.

Every human being thinks at some point in life they're exceptional — until they're not. Believes they're invincible — until they're not. Somehow even, immortal — until they're not.

I don't know if I'm more aware of this because I am an oncologist or if I am an oncologist because I have always been perhaps more aware of this.

What I do know is that for all of us, our preexisting condition is our one unifying diagnosis: being human.

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About Dr Jennifer Lycette
Jennifer L. Lycette, MD, is a rural community hematologist-oncologist, mom of three, and recovering perfectionist who's writing her way back from physician burnout, one word at a time. Her essays have been published in The New England Journal of Medicine, JAMA, JAMA Oncology, Journal of Clinical Oncology, The ASCO Post, and more. Connect with her on Twitter @JL_Lycette or her website.

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