Ending Life With a Dose of Honesty
The radiation treatments have ended. Chemotherapy has run its course. What could be taken out of the body has been removed. And still, the cancer has not been conquered.
Then, the patient’s question comes: “Give it to me straight, Doc. How long have I got?â€
And here, the man or woman in the white coat flinches, dodges the question, prevaricates. How to weigh the value of hope against the certain knowledge of death? How does a doctor look a patient in the eye and say, “This is when you’re going to die.â€
Not very well, according to a recent study, the first detailed look at the ethically troublesome question of how forthright doctors should be with patients nearing the end of life.
A poll by researchers at the University of Chicago found that doctors asked for a prognosis by their terminally ill patients tended to either withhold predictions or exaggerate how long the patients were expected to survive.
It’s not incompetence or ill-will by doctors, says Dr. Elizabeth Lamont, co-author of the study. “It’s evidence that physicians care deeply about their patients ... love them, love their families, and don’t want to upset them any more.
“But it does raise some practical issues, and some spiritual ones, that we really can’t afford to ignore.â€
The survey polled 258 Chicago-area physicians who had just admitted patients to hospice care. Although death for most patients was imminent, only 37% of the doctors said they would level with those who asked how long they had to live. Most of the others said they would tack on time, erring toward optimism in the estimates they gave. Twenty percent said they’d say nothing at all.
“Add to this the fact that doctors tend to make optimistic errors--unconsciously--in their own predictions,†Lamont said. “So the patient winds up twice removed from their actual prognosis for survival.
“They might hear from the doctor that they can expect to live another four months, when the doctor actually believes it’s three months, and, in reality, they only have three weeks.
“So they’re going along thinking they have four months, when they actually have less than a month. They delay saying goodbye, getting a will together, calling children here from out of state. And then, unexpectedly, they die.â€
Like much of medicine, there is as much art as science to the telling. How and when? How much do they want to know as death approaches? “It’s really something we learn from our patients,†says cancer specialist Dr. Stephen Forman at City of Hope Cancer Center.
“It’s not a question of just putting a date on it--’You’ve got six months to live. Next patient.’ It’s a process that we walk them through, and it grows out of the intimacy of patient care, out of their own reflections, questions and attitudes.â€
The study found that doctors were more apt to level with elderly patients than with younger ones. And the shorter the anticipated survival time, the more likely it was that a doctor would lie, to give a patient the illusion of more time. It is understandable, this vacillation. The young and those at death’s door--they must be the hardest to tell. But is it fair to them or ethical to not be as honest as possible?
Some might say yes; that hope is a powerful curative and a doctor’s prognosis is just a guess. Doctors are not soothsayers, after all. We all know someone who beat the odds and lived long past the time they were supposed to die.
But guiding a patient toward death can be the most important thing a doctor does. I know, because my heart still aches as I remember my mother stumbling, alone, toward death 26 years ago.
I recall her doctor and his watery blue eyes that wouldn’t meet mine, after I’d summoned all the courage a teenager could muster and confronted him to ask how longer Mommy had to live.
“A year, maybe two,†he said, shuffling through her medical file. “Depends on how she responds to treatment. If she doesn’t respond well
My mother was one of those. She lasted just eight months from diagnosis to death from multiple myeloma--a bone marrow cancer considered incurable, even now. Through those months, we all walked around in the dark, planning for a future that would not arrive.
“When I’m up and around again ...†she used to say, as I pushed her wheelchair around the house, resisting her efforts to teach me how to pay the bills, make a meatloaf, iron pleats in a skirt--all things a motherless child should know.
Maybe she knew that she was dying. We never talked about it, so I’ll never know. I’ll always feel cheated by that physician, who had neither the power to cure her, nor the courage to help us let her go.
Maybe hope is healthier than truth sometimes. Some studies have shown that stubborn resistance to death tends to improve survival rates among AIDS patients, and may improve the quality of their lives, because they take better care of themselves, rather than just waiting to die.
But unrealistic expectations can also subject patients to needless medical interventions and deprive them of a chance to prepare for a dignified demise. “Sure, we all want to be cured,†says Lamont. “And physicians want to cure. But if we can’t, then let’s be frank. Let patients know when they reach the end of their lives.â€
And I think of all the pain my mother suffered in pursuit of a few more weeks of life, and all the things we could have shared, if we’d known how to breach that frightening divide.
Sure, hope is important. But I’ll take honesty when it’s my time to die--truth tempered with compassion--from a doctor who cares enough to help see me through to the other side.
*
Sandy Banks’ column runs on Tuesdays and Sundays. Her e-mail address is [email protected].