Tonight I drove with a friend to meet Dr. Sunita Puri, the Medical Director of Palliative Medicine at Keck Medical Center of USC. Puri discussed her new book “That Good Night” which I’ve only read excerpts of so far but plan to finish during spring break.
The book was titled after a poem by Dylan Thomas, imploring us not to just “go gently into that good night” but instilling a strong invocation for us to live boldly and to fight. Puri implored the need to problematize what it truly means to fight–especially in the context of medicine where language has molded our view of what being a fighter truly looks like.
Someone from the audience shared how during their father’s last days of life, physicians were suggesting countless different routes of treatment they could try “we could try this, but also consider this, there’s this too.” She sat there and could feel in her bones, that he was just dying. They were at a fork in the road where all their energies were being divided. “We could try all these things, but I wanted my emotional energy to be focused on him, my father, as a person who is simply dying and needs me here with him.”
Physicians are continually being trained today in the multitude of treatments and new invasive techniques invented to extend life. And why not? Science is just incredible… The other day in my hematology oncology preceptorship, a targeted therapy against a BCR/Abl1 protein that was overtaking a woman’s frontal lobe and untreated eventually her entire brain cured her in a matter of weeks. No sign of relapse and going on 2 years thinking now about how to convince her husband to go skiing with her and their grandchildren. The power of research and the miracle of science did this for her, so that she could be sitting before us smiling from ear to ear about her normal blood count for the 5th check-up in a row. But we’re not trained to talk about how to handle patients or cases when there’s no immunotherapy or specific mutation to target. When the body is simply reaching its limit. We are trained to think what else? how else? But I’m scared for the moment when I come across my first patient and I have no injection, no pill, no surgery, no radiation, no therapy, no prescription to reverse where the body has decided to head. But it will come, and I alongside all of my classmates aren’t prepared for it.
Medicine has taken on the allegory of a battlefield–patients as the warrior and the body as the enemy. With this militaristic approach to disease, the mantra has become: I am a fighter. When they die, they are perceived to have “lost the battle.” There’s a vocabulary we’ve been molded to utilize in our shaping of the illness experience that amounts incredible pressure on the patient against their own limits. I saw the limits my mother faced in her rounds and rounds of chemotherapy, and I can imagine what countless other families feel forced to take on in this “worthy forlone war against cancer.” All of the complexities of disease and illness distills everything into one or two words, taking away the conversations we could be having with them instead. In residencies, patients who are fighters have the stigma of those who would be difficult, have unrealistic expectations of their treatment courses, unable to accept or understand how sick they really were. They refuse to entertain any possibility of giving up. When they feel like the only way to handle disease is to fight, do everything it takes, it doesn’t matter how much or how difficult or how painful–we can’t ask the important questions: What are you fighting for? What does everything look like for you? Tell me what it is you want me to fight for you on your behalf? We need to excavate the meaning of a word or phrase as their advocates in the medical field. Otherwise who are doctors to unpack the word of hope for these patients. We are expected to offer any and all treatments regardless of consequence. But we as physicians can force clarity what a miracle might mean:Does the fighter grasp the complexity of the battle? How specifically do they understand the fight? Can they understand why their body is telling the it’s shutting down? What is worth fighting for? Can there be miracles besides the complete total curing of a diseased body? When the battleground is one’s own life and body, these questions need to be asked and discussed before forging forward blindly.
When faced with anything life-threatening, our bodies are wired to do anything in its power to stay alive.
The soul wears the body like a cloth and sheds it at death.
We’re so deeply socialized to keep people alive at all costs–including the cost of their suffering. There’s a complex interplay between the two: the public thinks our role is to keep people going no matter what while history tells us medicine was created to make life better. We don’t know how to begin conversations about our mortality the natural incumbence of death. What if it wasn’t a war but a journey.
Everything you want is on the other side of fear.
Puri shared with us her strongest patients — a Vietnamese man who was small for his age but had the heart of what she believed was a true warrior. He told her, “I love my cancer because it is part of me.” It is tremendous what dying gives us the opportunity to provoke us further into. My mother’s relationship with God deepened during her illness while others find it pushes them farther from their faith and farther into atheism. But those who embrace the illness as part of their story instead of the disruption of it are those who are truly brave. And if we changed the narrative, we could help shift the framework for everyone to reach this mindset. We can normalize talking about mortality, anticipating and welcoming it as a rite of passage. The alternative is acquiescing to the frightening realm of extending every and all efforts into eventually a realm of harm – extending the dying process with technology.
Medicine at the end-of-life is currently in a binary: fight aggressively to the end or just give up. Talking about palliative care is giving up. A celebrity recently was published to have “decided not to receive medical treatment” when in fact she had simply accepted palliative care treatment — to treat the pain. We need to change the narrative and remind ourselves what medicine truly was meant to be and can still become. But first, we need to train students (like me) how to talk about reality without taking away hope. This comes with asking patients what they are hoping for. Unfinished thoughts throughout this whole week but I will stop here.
The cover is a sunset with blues fading into reds, oranges, pinks. The illustration of how death should be: a beautiful fading of the day into that good night. A beautiful book.
Sora in Seoul 