“A performance,” the physician called it. She was referring to futile treatments of a dying patient in the Intensive Care Unit performed to make the family feel that “everything had been done.”
Well, thanks but no thanks.
Does the poor dying person get a voice here? Whose body is being bashed by chest compressions, invaded with wires and tubes, unceremoniously “treated” – just because we can? If it’s ever mine (though I’ve got every possible deed & document designed to keep me out of ICUs) I will come back to haunt everyone in that room.
What brought this up again – I’ve written about futile treatments of the dying before, and probably, sadly, will again – was an opinion piece published recently in the New York Times by Daniela J. Lamas. Lamas is a pulmonary and critical-care physician at Brigham and Women’s Hospital in Boston. The sentence that sent my blood pressure skyward was this: “Even if my patients are beyond pain, there is also a cost to those who are forced to perform emergency efforts that is just that: a performance.”
I submit there is also a cost to the patient. Who really knows what “beyond pain” means to a human being?
It is gauche and unacceptable to mention the financial cost here, but I can’t help that either. We could pay off the national debt in a year or two by simply facing up to this issue. If physicians like Dr. Lamas don’t enjoy “performance treating” in ICUs, and (prospective) patients like yours truly Do Not Want all that heroic resurrection stuff done – why can’t we talk about it?
Granted, the job of EMTs and ICUs is to preserve life at all costs. But what if we, the reasonably healthy public, were to demand limitation of those costs? What if we were to demand – write it into advance directives, tell every friend and family member, maybe tattoo it onto our chests – that heroic life-preservation efforts be made only when reasonable life may be made possible?
Lamas was telling the story of a family unready to face the death of their loved one, despite the fact that “It was clear that there was nothing more that we could do. Except keep (the patient) alive until Monday.” That meant two full days of sedation, intubation and every conceivable medical procedure – including, hopefully, enough pain medication to avoid terrible suffering, but who knows, really? And for what? Or, more to the point, for whom? The essay was aptly titled “Who Are We Caring for in the I.C.U?”
If you Google “futile medical treatment” the list of articles and studies is impressive – plenty of medical professionals are as concerned as this lay writer – and one conclusion is stark: the waste of time, skills and money on futile treatment at life’s end is enormous. And for what?
Obviously there’s no one simple answer. Often as not, there’s one family member (or more) arguing for a loved one’s life to be extended even when everyone knows that death would be the kinder choice. To that not-dying person I would say, Get over it. Well, I wouldn’t say it like that; I’d say it very, very kindly because the not-dying person clearly has issues.
But we, as a society, need to get over thinking of death as the ultimate enemy and “life” as something that must be preserved even when it’s no longer living in any sense. Most of us would far prefer a peaceful death – at whatever age – to a vegetative state that is unpleasant at best and painful at worst. But only by writing those (and other!) preferences down, and talking about them out loud, will we ever diminish the sad, wasteful “performance” care of the ICU.
One healthy person at a time. Want to join this movement?
We had a friend, strong, successful, gorgeous with a beautiful wife and two beautiful kids, who fell ill with ALS. He’d made every effort known possible to permit his family to let him go when his life lost quality. He forged valiantly on for a few years, first losing his ability to walk, then to feed himself, to speak. He learned to play chess by winking his finally remaining muscle, his left eyelid. That, of course, ultimately failed him s well. It was time. BUT! Enter his mother. She could not let her baby go (by this time, he was probably 42.) She had him moved into her living room, set up a hospital suite, including ventilator and turning machine, a human rotisserie to prevent bedsores. The wife felt powerless. The patient, obviously, lost his agency. For more than five years, this poor man spun on his spit in mom’s house, insurance paying a cool million each year. Was he sentient? He had no physical way to say “cut this shit out, Ma!” There is so much wrong with how his life played out.
Thank you Fran expressing your outrange so well.