Dying Badly in the ICU

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“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?

When Cure Is Not An Option

“Has anybody asked the patient?”

Jessica Nutik Zitter raised her hand to pose that question some years ago, at a “Morbidity and Mortality” conference wherein a room full of physicians were discussing treatment options for a dying patient. The doctors continued to talk about surgery A or drastic measure B. Zitter raised her hand again to say, “Has anybody asked the patient?”

Zitter is now a highly regarded critical care/palliative care physician who speaks and writes often on end-of-life issues. A solitary voice at that “M&M” conference, today she is one of the leading voices for medical care that asks the patient first. It is the care most of us would choose.

Zitter spoke recently at San Francisco’s Commonwealth Club, an event titled “Avoiding the End-of-Life Medical Conveyor Belt.” Her horror stories explain the conveyor belt metaphor, and confirm the immensity of the end-of-life care problem facing us all. The problem is not just with our cultural inclination to ignore death altogether, as has often been written about in this space, or with physicians’ inclination to continue treatment as if death were not an option. It’s both.

Fran & Jessica Zitter 6.9.15
Jessica Nutik Zitter with Fran Johns

Jessica Nutik Zitter’s stories (a book is forthcoming from Penguin Random House) starkly highlight the death-is-not-an-option attitude unfortunately still common in the medical profession – and the pain and anguish endured by patients who wind up on the conveyor belt as a result.

People will often say, “Take a chance! Maybe God will work a miracle…” Zitter comments, but “the odds are high for (that person’s) being committed to a great deal of suffering and a grisly death.”

Thus the conveyor belt: a patient who is dying and could use a little peace instead winds up undergoing a cruel series of events – resuscitations that mean broken ribs, restored breathing that means a tube thrust down the throat, futile interventions that add to – and prolong – pain and suffering.

Zitter tells of a patient who was essentially “a body,” shrunken and yellowed, being given emergency resuscitation that one nurse likened to torture; and of a man repeatedly taken from the nursing home to the ICU, because he had hand-written a note saying he wanted his life prolonged ‘at all costs.’ “We don’t give people graphic visuals of what those costs may be,” she says.

Asked why doctors don’t practice patient-centered care, Zitter cites two factors – in addition to the imbedded tradition of always providing treatment, and more treatment. One is the need for physicians to get paid for time spent on end-of-life discussion, something that seems perfectly rational but tends to get shouted down in the politicized healthcare arena. The second is equally simple: “If you don’t offer care, someone else will.”medical symbol

Asked by an audience member about what constitutes good care when cure is not an option, Zitter recommended that decision making in such cases should be made early on. “The possibility to cure gets me up in the morning,” she said, “but helping a dying person achieve a good death is equally satisfying.” While advance directives are useful, she points out, they are not enough. It’s important to talk extensively with friends and loved ones, and to create documents with the help of legal and/or healthcare professionals if possible. (A growing number of individuals and organizations are offering such services.) “But decisions have to start with the patient,” Zitter says. “The patient saying ‘do this’ or ‘don’t do that.'”

Otherwise, it’s onto the conveyor belt.