by Paula Span
The New York Times
October 24, 2012
Your relative has spent five days in a hospital intensive care unit, unable to breathe without a ventilator and incapable of making her own medical decisions. Because she appointed you her health care proxy, or simply because you’re her closest relative, the choices about treatments — trying them or stopping them — fall to you.
It’s not a hypothetical situation: One-fourth of elderly people die in an I.C.U. A patient in intensive care on a ventilator probably requires a feeding tube, a catheter, various IV lines. Perhaps her doctors are suggesting dialysis or recommending surgery. There are many choices to be made.
To act as her surrogate is a daunting proposition. “It’s incredibly intense to not only be confronted with loved ones at death’s door, but to have to make treatment decisions you hope are in their best interests — and sometimes you’re not sure,” said Douglas White, a bioethicist at the University of Pittsburgh Medical Center who has studied end-of-life decision-making for years.
Discussions about the end of life, when they happen at all, often focus on what would happen if someone becomes irreversibly comatose or faces a terminal disease. But the victim of a severe stroke, for instance, may remain extremely impaired, physically and mentally, and institutionalized for the rest of her life — yet still be semiconscious.
“Is this a state in which a person would want to be kept alive?” Dr. White said. “It’s a tough question to answer.”
Small wonder that in the study he and his team just published in Critical Care Medicine, more than a quarter of the 230 surrogate decision-makers were not confident they understood what their relatives would want in this very situation — five days in an I.C.U. on a vent. (I would have guessed the proportion to be higher still.)
But the researchers also found some factors that lightened this burden and helped surrogates feel more certain they were following their relative’s wishes. One was having had prior experience as someone’s surrogate. But that wasn’t the most important.
What mattered more? First, having had a previous conversation with the patient about her preferences for treatment. And second, having better-quality communication with the I.C.U. physician. The better the surrogates judged these conversations — Did the doctor use words they understood? Ask about their spiritual beliefs? Talk about when and how their loved ones might get sicker or die? — the less they struggled to make decisions.
We can draw a couple of lessons from this. Medical and legal experts constantly urge families to talk about these issues in advance of a crisis and to document their wishes. Entire campaigns, like Ellen Goodman’s Conversation Project, have formed to promote this idea.
So far, most Americans seem to be ignoring these pleas (including mine). Although the primary reason is probably that nobody likes to contemplate such situations, perhaps another is that we can’t point to much evidence that health proxies and other documents make things go better.
“A lot of people have expressed a lot of skepticism about advance care planning,” Dr. White said. But his findings show that people do their families a significant favor if they talk about their end-of-life preferences. Even if they neglect to put them in writing, their caregivers will feel better able to handle the stressful task of acting on their behalf.
Moreover, the study underscores the importance of the way physicians talk to the families of very sick people. “It suggests that family members don’t come to an I.C.U. with fixed ideas,” Dr. White said. “The way the doctor interacts with them affects the process.”
The higher these surrogates rated their communication with doctors, the more quickly they reached decisions and the less time their loved ones spent on life support. Looking at the patients who died in the I.C.U. — 43 percent of them did — those whose surrogates had better communication spent up to 12 fewer days on ventilators and other technological supports. When a doctor was unclear or perhaps evasive, the patient had a longer I.C.U. stay but died anyway.
“There’s work we can do as doctors to improve the experience for families as well as patients,” Dr. White said. And there are discussions we can have that will do the same.