End-of-Life Choice, Palliative Care and Counseling

Among the Very Ill, Confusion About Life’s Endby Jay

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By Paula Span
The New York Times
June 4, 2012

A final dispatch from the recent American Geriatrics Society scientific conference in Seattle:

The unwillingness of older Americans to ponder, discuss and plan for the end of their lives remains an enduring frustration for health care professionals.

Despite public campaigns and private pleading, despite new approaches, a great majority of people — even the very old and very sick — don’t complete the documents that would make their choices and preferences clear to their families or their doctors. (Terri Schiavo, allowed to die in 2005 after a protracted legal battle over whether to stop treatment, probably did more for advance care planning, unwittingly, than anyone else in recent history.)

Debates about the reasons tend to focus on our resistance to accepting mortality, our own or others’. Physicians, ample evidence shows, are hardly immune to that discomfort and evasion. But preliminary findings from a Yale team examining how older people with serious illnesses envision their futures suggest an additional factor: rampant confusion.

Dr. Katriina Hopper, the internist and research fellow who conceived the study, remembers tending to a patient in intensive care at Yale New Haven Hospital. “I didn’t think it would be like this,” a relative confided to her as the days passed. A hospice patient once said much the same thing as a fatal illness dragged on: “I thought I’d go to sleep and not wake up.”

“It’s become a recurring theme,” Dr. Hopper told me. “It made me wonder how people see the probable course of their illness, how they think they will do.”

The 185 people she studied (average age: 73) all lived in their communities, not in institutions. They all had advanced cancer, heart failure or lung disease and met hospice criteria, meaning that they were likely to die within six months (though some lived considerably longer). Interviewers asked them about their illnesses and their futures every four months for up to two years.

The key question: “Which of the following best describes what you think the course of your final illness will be?” The possible answers: “Will die suddenly. Will die within a day or two of a serious complication. Will die after prolonged illness. I don’t know.”

At both the initial interview and the final one, uncertainty (“I don’t know”) was the most frequent response, at roughly 40 percent. About a third said they expected a prolonged illness — which was likely to be the case. “Very few people die suddenly in their sleep,” Dr. Hopper pointed out.

How patients envisioned their final weeks and months appeared uninfluenced by a long list of characteristics. It didn’t matter what age or race they were, or if they were depressed, fatigued or in pain. It didn’t matter if they’d cared for another sick person over a long period, though the researchers had expected it would. The only really significant correlation was that those with cancer were more apt to expect a prolonged illness.

In the absence of real understanding, patients vacillated about their futures. Almost everyone changed his or her response between one interview and another; in fact, 56 percent changed their minds twice or more. “It speaks to their uncertainty,” Dr. Hopper said.

What these preliminary results don’t tell us is why people were so uncertain. Each individual had a terminal disease with a somewhat predictable trajectory, though precise prognoses are always difficult. Did they avoid asking their doctors what was likely to happen and how quickly? Or was it the doctors who declined to share what they knew? Or — we know this happens — did the doctors try to address the realities, but patients or families didn’t take in or evaluate the information?

But the findings make sense, in a way. Why would patients feel any urgency about discussing or documenting their decisions about the end of life if they think that’s going to be an instantaneous or two-day process? Or if they have no idea what might occur? Apparently, they don’t.