NYT Opinion: We need to embrace new ways of telling medical stories.
Daniela J Lamas is a consulting producer on the NBC show Brilliant Minds.
OPINION
On television, medical stories end with a diagnosis and a return to normalcy. In reality, they are far more complicated.
The classicmedical storyline has a few key ingredients. There is a likable protagonist with a set of perplexing and debilitating symptoms. There are clear stakes. Will the young patient be able to walk down the aisle at her wedding? There is a diagnosis, followed by a high-stakes surgery or a risky medication. And then there is the final act. The bride walks down the aisle. Life returns to how it once was.
I’m in the writers’ room helping to draft the script for a new television medical drama, and we’ve hit a roadblock in the fourth act. We’ve successfully set up the mystery and designed a clever way for our hero – a physician based on the famed neurologist Oliver Sacks – to clinch the diagnosis. But here’s the challenge: our patient doesn’t get better.
At least, not in the way that we generally define as “better”. We are writing about brain disease, and there’s no cure. The character’s diagnosis is instead the start in a long process of adaptation to a new reality. This is a challenge to portray on network television, for a public that is accustomed to a particular brand of medical heroism.
Oliver Sacks inspired a more realistic portrayal of patients with chronic conditions in television writing.
But this, to me, is a challenge worth undertaking.
In the real world, life after serious illness is often changed forever. Even when a disease is ostensibly treated, symptoms can linger. Millions in this country with long Covid are still dealing with side effects of their initial illness, grappling with chronic fatigue and brain fog for months and years. Sometimes a psychotic break really is the first presentation of schizophrenia, and the first step to learning to manage it for a lifetime. Cancer and heart disease can become chronic conditions. None of these would be satisfactory ends to a traditional medical drama.
As a society, we often define the success of our medical treatments by how much they restore physical abilities. This is not just a television trope – it is also how doctors measure quality of life. A common scale that we use to determine a patient’s wellbeing, for instance, asks about physical abilities like climbing stairs and carrying groceries. A life with fewer functional abilities and independence is rated a life of lower quality.
These assumptions can affect the care of patients. As a doctor in an intensive-care unit, I often have conversations with patients and families about whether to push forward with interventions that could save a life but leave the patient with significant physical or cognitive deficits. I ask: What abilities are so critical to our patients’ lives that they could not tolerate living without them? Could they tolerate a life on a tracheotomy tube connected to a ventilator? Could they tolerate no longer tasting food but instead receiving it through a tube in their stomach?
These questions are valuable. But I worry doctors risk making decisions without acknowledging the power of patients to adapt to new circumstances. Perhaps an outcome that sounds unacceptable to a patient or family or medical team in the moment might become more acceptable with time.
I recently cared for a man who had become quadriplegic after jumping up to catch a softball during a recreational game and hitting his head on a fence at exactly the wrong angle. If this were a traditional medical TV drama, a risky surgery would allow him to walk again. But in the hospital for a months-long recovery, he was learning to adapt. Recovery did not mean that he would walk again – that would most likely not be possible at least in the near-term. Instead, he hoped to one day take breaths on his own without the need for a tracheotomy tube, to be able to navigate his own home and continue to raise his two children. This does not necessarily make him a hero, but rather someone experiencing the world differently, whose story is worth telling.
If we don’t tell stories like his – ones that are simultaneously hopeful and tragic – doctors and patients risk thinking that a life with severe illness or disability is not worth fighting for. But there are so many ways to exist in the world, and I increasingly believe that it is impossible to make decisions about the quality of life for another individual.
Oliver Sacks was fascinated by how people could continue to find meaning in their lives despite neurological disease. He could rarely offer a cure; there was no remarkable surgery in the final act of most of his patients’ lives. But he could give them his time, his attention and his thought. Whether it was the colour-blind painter or the man who lost the ability to make new memories, he could help them find ways to adapt.
Back in the writers’ room, we make it to the final act, away from the traditional medical plot line that closes with the return to normalcy, and embrace an ending that hews closer to reality. We do not yet know whether the public will also embrace this new sort of storytelling. But we need to try.
