Blair Bigham is an emergency and critical-care physician and author of the new book Death Interrupted: How Modern Medicine Is Complicating the Way We Die.
I don’t sleep very well.
It’s not the shift work my role as an ER and ICU doctor mandates; melatonin and enough caffeine to necessitate an endoscopy earlier this year help keep me up when I’m at work and down when I’m home, black garbage bags taped to my bedroom windows to block out the daylight. It’s that when I sleep, I toss and turn, my mind still firmly planted at the hospital.
In acute-care medicine, we are forced to make an astonishing number of high-stakes decisions every hour, at any hour. But there is one decision that I most often second-guess, the one that keeps me shifting my pillows around, as if a lumpy pillow were the cause of my insomnia.
That decision can be summed up as: Do I resuscitate or palliate this dying patient?
It’s a decision that used to come easy to me. During my decade working as a paramedic, death always seemed obvious to me; it was clear when someone was too far gone to save. Craving more adrenaline, I headed to med school in 2012, where the black-and-white impression I had of death seemed less certain. I then went on to pursue dual specialties in emergency and critical-care medicine, where the decision to resuscitate or palliate became more difficult.
At first, we tend to be optimistic, throwing everything plus the kitchen sink at people as they are dying. As time goes on, we can sometimes be downright unrealistic in our attempts to give hope, over-promising on what modern medicine can deliver – a phenomenon I call “resuscitation glorification.”
Other times, there is a tendency toward fatalism – we assume that death will come, perhaps before we actually have evidence that it will. Fatalism can lead ICU teams to gravitate toward palliation, fearful of the slow and terrible death many patients suffer while tethered to machines.
To be sure, the decision to resuscitate or palliate is clear quite often. Families and patients, tired of being exposed to the pains of modern medicine, are often at peace with an impending death. Either through words or documents, they draw a clear line in the sand, and I dutifully comply. Other times, we doctors give it our all, even when the odds may seem remote; a young patient, a sudden catastrophe, a pleading spouse.
But there are times 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 draws, and the indignity that comes with hospitalization? Would they have had more meaningful moments at the end of life had they been home, surrounded by the people who had known them for years? Physicians like me use signals (of varying clarity) all the time to gently nudge, to hint, that we should flip 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 ought to have?
The rub lies in the grey zone. In my disgust at watching people suffer and linger, I am biased to advocate against a late death. But as a physician whose heart entered the profession to cheat death, I don’t want to deny a chance at a full recovery, at a chance to die another day, in another way, somewhere nice, somewhere not here with me. I never want anyone to die too early.
In reality, the decision to resuscitate is often a roll of the dice. And if chance is involved, patients should be too. If the pandemic has taught me anything, it’s that death can come too soon, but that I’m really quite awful at knowing how soon. It’s taught me that there are things worse than death, such as being tethered to technology that can’t save you, but won’t let you go.
I began asking senior intensivists around the world about this death dilemma; my conversations were reassuring but provided no resolution to my strife. It seems the longer that one practises critical-care medicine, the more comfortable one becomes working in the grey zone between alive and dead. Those with 30 or 40 years in the trenches sympathized with my struggle, inviting me to lean in to the uncertainty, practise more humility, and recognize that prognostication – the prediction of patient outcomes – is tricky, imprecise and fraught with biases. They implored me not to jump to conclusions, while also encouraging me to express my deepest concerns for the harms of taking a full-throttle approach with patients clearly dying.
One of those senior intensivists was Randy Curtis, who practises both critical care and palliative care at Harborview Medical Center in Seattle. In a bitter irony, Randy has been diagnosed with ALS, a terminal illness that has robbed him of his ability to speak, amongst other things. Over e-mail, Randy gave some sage advice that applies not only to a budding intensivist like me, but to us all:
“There is inherent challenge in differentiating ‘false hope’ from ‘true hope.’ The unfortunate reality is that our ability to prognosticate about survival and future quality of life [is] inherently limited and will always create a tension that needs to 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 bear the burden involved in helping with shared decision-making.”
He also had a warning for me: “My advice is to take very seriously the responsibility and obligations that come with prognostication. I think young physicians often have too much or too little confidence in their ability to prognosticate. We have to be very careful to be sure that our prognostication is not being influenced by our personal values around an acceptable quality of life or an acceptable chance of meaningful recovery.”
Modern medicine is amazing. It saves lives. For some, it extends a good life by decades. For others, it deprives them of a beautiful, dignified death by delaying the inevitable. Yet for those of us who work on the brink of death, the pandemic has been a lesson in humility, in compassion, in learning all the things science can’t be to everyone.
There is no shame in any one of us choosing to take a chance on technology in hopes of recovery, only to be failed by the limitations of medical science and those who practise it. But this approach requires self-reflection, before the moment of tragedy requiring such a decision arrives. It means asking yourself how you might die if that technology fails you, because now you might have a choice in your own ending.
Medical science has advanced to the point where doctors must take great care not to obscure the choice between resuscitate and palliate, and patients and their families must take great care to temper expectations for 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 by experience, values and a well-placed fear of dragging things out. The sheer amount of communication required to determine the best path borders on inconvenient, given the hectic pace of the ICU. Yet, health care teams usually collaborate with patients and their families to find the right balance.
Other times, I toss and turn.