Blair Bigham is an emergency and critical care physician and author of the new book Death Interrupted: How Modern Medicine Complicating the Way We Die.
I don’t sleep very well.
It’s not the shift work that my role as an emergency and critical care physician requires; melatonin and enough caffeine to need an endoscopy earlier this year help me stay awake when I’m at work and at home, black trash bags taped to my bedroom windows to block daylight. It’s that when I sleep, I toss and turn, my mind still firmly anchored in the hospital.
In acute care medicine, we are forced to make an astonishing number of high-stakes decisions every hour, every hour. But there’s one decision I question most often, the one that keeps me from moving my pillows, like a lumpy pillow is the cause of my insomnia.
This decision can be summed up as follows: Should I resuscitate or treat this dying patient?
It was an easy decision for me. During my decade of work as a paramedic, death always seemed obvious to me; it was clear when someone had gone too far to be saved. Craving more adrenaline, I headed to medical school in 2012, where my black-and-white impression of death seemed less certain. I then pursued a dual specialty in emergency and intensive care medicine, where the decision to resuscitate or palliative became more difficult.
At first we tend to be optimistic, throwing everything, plus the kitchen sink, at people as they die. Over time, we can sometimes be downright unrealistic in our attempts to provide hope, promising too much about what modern medicine can deliver – a phenomenon I call the “glorification of resuscitation.”
Other times there is a tendency to fatalism – we assume death will come, perhaps before we actually have proof that it will. Fatalism can lead intensive care teams to turn to palliative care, fearing the slow and terrible death that many patients suffer while strapped to machines.
Admittedly, the decision to resuscitate or palliate is quite often clear. Families and patients, tired of being exposed to the pains of modern medicine, are often at peace with imminent death. Whether in words or documents, they draw a clear line in the sand, and I dutifully follow them. Other times, we doctors give it our all, even when the odds may seem remote; a young patient, a sudden catastrophe, a pleading husband.
But there are times when I wonder if, collectively, we made the right decision.
Was the writing on the wall before I could see it? Could I have spared someone the tribulations of procedures, blood tests and the indignity that comes with hospitalization? Would they have experienced more meaningful moments at the end of life if they had been at home, surrounded by the people who had known them for years? Doctors like me use cues all the time (of varying clarity) to gently push, suggest we should reverse the plan and focus on comfort. Was I too slow to send these signals? Too passive in my suggestions? Am I the reason this person died later than they should have?
The problem is in the gray area. In my disgust at seeing people suffer and linger, I tend to argue against a belated death. But as a doctor whose heart entered the profession to cheat death, I don’t want to deny a chance for complete recovery, a chance to die another day, some other way, somewhere nice, somewhere. not here with me. I never want anyone to die too soon.
In reality, the decision to resuscitate is often a roll of the dice. And if chance is in the game, the patients must be too. If the pandemic has taught me anything, it’s that death can come too soon, but I really have a hard time knowing when. It taught me that there are worse things than death, like being attached to technology that can’t save you, but won’t let you go.
I started asking senior intensivists around the world about this dilemma of death; my conversations were reassuring but brought no solution to my conflicts. It seems that the longer one practices critical care medicine, the more comfortable one feels working in the gray area between the living and the dead. Those in their 30s or 40s in the trenches sympathized with my struggle, urging me to lean into uncertainty, practice more humility, and recognize that prognosis—predicting patient outcomes—is tricky, imprecise and full of prejudices. They implored me not to jump to conclusions, while encouraging me to voice my deepest concerns about the harms of a full-throttle approach with clearly dying patients.
One of those lead intensivists was Randy Curtis, who practices both critical care and palliative care at Harborview Medical Center in Seattle. In a bitter irony, Randy was diagnosed with ALS, a terminal illness that robbed him of his ability to speak, among other things. Over email, Randy shared some great advice that applies not just to a budding intensivist like me, but to all of us:
“There is an inherent challenge in differentiating ‘false hope’ from ‘real hope’. The sad reality is that our ability to predict future survival and quality of life [is] inherently limited and will always create tension that must incorporate uncertainty, emotional and psychological support for patients and families to help them prepare for their role in shared decision-making, and physicians who are willing to shoulder the burden shared decision support – manufacturing.”
He also had a warning for me: “My advice is to take the responsibility and obligations that come with prognosis very seriously. I think that young doctors often have too much or too little confidence in their ability to predict. We must be very careful to ensure that our prognosis is not influenced by our personal values around an acceptable quality of life or an acceptable chance of meaningful recovery.
Modern medicine is amazing. He saves lifes. For some, it extends a good life for decades. For others, it robs them of a beautiful, dignified death by delaying the inevitable. Yet for those of us working on the brink of death, the pandemic has been a lesson in humility, in compassion, in learning all that science cannot be for everyone.
There is no shame in any of us choosing to take a chance with technology in hopes of recovery, only to be disappointed by the limitations of medical science and those who practice it. . But this approach requires self-reflection, before the tragic moment arises requiring such a decision. It means asking yourself how you could die if this technology fails you, because now you might have a choice of your own end.
Medical science has advanced to the point where physicians must take great care not to cloud the choice between resuscitation and palliative care, and patients and their families must take great care to temper expectations of what can be achieved. After all, medicine is meant to do good, and at some point it can only do harm.
Humility, compassion, and hope must be balanced with experience, values, and a well-placed fear of dragging things out. The amount of communication required to determine the best path borders on the inconvenience, given the hectic pace of the USI. Yet healthcare teams typically work with patients and their families to find the right balance.
Other times I toss and turn.