Amanda Bennett is a contributing columnist for The Washington Post, and the author of The Cost of Hope, a book about an end of life journey.
When, in the middle of a dark December night, the University of Pennsylvania intensive care resident told me my husband of 20 years might not live through the night, I did what many people do: I asked the doctor to do what he could to keep him alive. Not to do crazy stuff. Not to try stuff he knew would be useless. Just do what he could.
Terence died four days later.
Years afterwards, I asked myself: Why did I make the choice I did? Terence and I were well aware of the issues surrounding end-of-life care. We both had signed advance-care directives, and they both said the same thing: Take no extraordinary measures if survival seems hopeless. Yet at each turn in Terence’s illness we made the same choice to go on, to try again.
As it turns out, the kinds of choices we made, and the ones millions of other people make, are at the heart of some of the most complicated and gut-wrenching issues surrounding end-of-life care. The last year of life is often the most expensive. Use of hospice — which provides only comfort care, not curative care — has been increasing, but so has aggressive treatment. During the last month of their lives, nearly one-third of patients with cancer are admitted — as was Terence — into intensive care.
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These choices are expensive. The four days in the hospital before Terence entered hospice were billed to our insurance company at $43,711 — including doctors, medicines, monitors, x-rays and scans. Of the $618,616 in bills for his seven years of medical care, nearly two-thirds was incurred in his last two years.
What makes patients and families like ours make the choices they do?
For one thing, the pace and success of scientific advances makes letting go much harder. To a medical professional, perhaps, the last end-of-life warning seemed clear cut. But how was I to know it was the last? It was the third end-of-life warning we had received — the first one at the very onset of the kidney cancer that didn’t kill him until seven years later. When he first became ill, there was only one viable treatment available. By the middle of his disease, he was on a clinical trial for the first two in what later became more than a half dozen new kidney cancer treatments. We had beaten this before. Couldn’t we beat it again? Couldn’t we hold out for more discoveries?
“Fighting” illness and death is also something we have all been culturally conditioned to think of as virtuous. Just do a search on the terms “cancer fight” or “cancer battle” and see what comes up. When life ends, as of course it does, it’s almost invariably characterized as a defeat. It’s so common say that someone “lost the battle against cancer” that the Journal of the American Medical Association actually ran a paper urging doctors to stop using the phrase.
That’s because doctors encourage us — inadvertently, perhaps — in the pursuit of aggressive treatment, even at the very end. They are trained to cure, after all, not to give up. They like to succeed, and having a patient die seems like failure. During my husband’s last week, I was caught in a struggle between the doctors in the hospital, who told me Terence was nearing the end, and our much-esteemed oncologist, who told us that better days were still ahead.
Then there is what many people, including the medical profession, scientists, and even clergy and hospice care workers like to call “denial,” a word I have come to dislike and distrust. When families and patients push for more — more care, more treatment, more life — in the face of a ravaging disease, we are said to be “in denial.”
Denial seems to me to be an awful lot like hope. Terence was a big man, who lived in a big way — he spoke seven languages, played more than a dozen musical instruments. We had two young children. He lived for seven years with his cancer and we struggled to stay optimistic the whole time. Why wouldn’t we keep on doing that for as long as we could? Why wouldn’t others do the same for their loved ones?
Calling hope “denial” turns it into something almost pathological, and makes it something that people are encouraged to just “get over.” But what if fighting and hoping and pushing hard to the end is just what humans do? What if what needs to change isn’t our — or even our doctors’ — will to keep trying to extend life, but instead all the things that surround that urge?
Perhaps we need to create a new narrative that honors the graceful retreat as much as it celebrates the fight. To change regulations, like hospice reimbursement rules that now require a sharp break between treatment and letting go. To train doctors, nurses, clergy and ourselves to recognize that the end is as much a part of life as the beginning so that we can see it, not as an abrupt break, but as a gentle glide.
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