When you die, will your wishes be known?
When hundreds of Massachusetts residents were asked about end-of-life medical care, the results revealed widespread failure by doctors and patients to prepare for illness and death.
Consider: One-third of people with a relative who had died recently said that medical professionals did not fully carry out the dying person’s wishes, according to the survey.
The poll results are expected to be released Thursday, at the first meeting of a consortium pledging to ensure that the state’s adults get care that fits their preferences. The Massachusetts Coalition for Serious Illness Care consists of 58 health care groups organized by Blue Cross Blue Shield of Massachusetts and leaders in improving end-of-life care.
The coalition’s formation signals widening concern about the painful and often unwanted treatments delivered by a medical system that’s driven to intervene — as well as a new willingness to tackle a scary and uncomfortable topic.
“This is the right time, and this is the right community in which to do it,” said Andrew Dreyfus, the president of Blue Cross.
He likened the coalition’s formation to the discussions that led to the landmark Massachusetts law expanding access to health insurance. The coalition wants to work with health care organizations and patients to ensure that people can easily express their desires for care and to guarantee those wishes will be followed.
The telephone survey, of a representative group of 1,851 Massachusetts residents between March 8 and April 3, found that o ne in five rated their loved one’s end-of-life care as fair or poor.
The findings also suggest why the final days can be marked by turmoil and misunderstanding: a lack of planning and communication, by doctors as well as patients.
Eighty-five percent of the respondents said doctors should discuss end-of-life wishes with patients, but only 15 percent had ever had such a discussion with a medical provider. Even among those with a serious illness, only 25 percent had talked about their wishes.
Fifty-five percent had failed to name a representative who would make health care decisions if they were incapacitated.
In one ray of good news, among those who had named such a proxy, 86 percent had discussed their wishes with that person. But barely more than half had told their doctors.
Len Fishman, director of the Gerontology Institute at the University of Massachusetts Boston, learned firsthand the value of such planning when his 86-year-old mother, suffering from dementia and living in a nursing home, developed pneumonia in 1999. When a doctor proposed admitting her to the hospital for exploratory surgery, Fishman initially considered agreeing.
Only when his sister reminded him of their mother’s clearly expressed wishes did he realize that hospital admission would be a disastrous betrayal. Instead, his mother spent her last days surrounded by children and grandchildren.
“She ended up having the most peaceful, beautiful death,” said Fishman, who is also co-founder of the Conversation Project, a group that promotes end-of-life discussions. The Gerontology Institute and the Conversation Project are members of the new coalition.
“What it drove home to me,” Fishman said, “is that a very natural human reaction, that is reinforced by the medical establishment, is to default to the most conservative thing’’ — more treatment and intervention. “Everybody is better off when the conversation has happened,” he said.
The survey, commissioned by Blue Cross and conducted by the research firm SSRS and the University of Massachusetts Medical School, illuminates reasons why those conversations don’t take place.
Large majorities of respondents said they weren’t sick and didn’t think it was necessary to talk with their doctors about end-of-life preferences, to designate a health care representative, or to talk to someone other than a health care provider. Many expressed confidence that family members and health care providers would know what’s best.
But often they don’t, said Dr. Atul Gawande, the surgeon and writer who is cochairman of the new coalition and author of the best-seller “Being Mortal: Medicine and What Matters in the End.” His book describes a woman who was astonished to learn — when she finally asked — that her erudite father would be happy to keep living as long he could eat chocolate ice cream and watch football on television.
“It was the best living will ever: ‘As long as I can do these things that matter to me, give me everything — if not, let me go,’ ” Gawande said.
When people voice their wishes and doctors honor them, Gawande said, patients spend less time in intensive care and more time at home, suffer less at the end of life, and even live longer.
But the coalition is not focusing just on the elderly and the dying. It intends to ensure that all people 18 and older in Massachusetts get the care they want throughout life — because serious illness can strike at any age, and tough health care decisions are often required, even for those who will survive.
Maureen Bisognano, the coalition’s cochairwoman and senior fellow at the Institute for Healthcare Improvement, recalled the death of her brother from lymphoma at 17. One day, doctors crowded into his hospital room, talking over him about his next treatment, though everyone knew he was dying. After they left, one doctor came back to ask Johnny what he wanted.
He wanted to go home.
The doctor carried the boy to his sister’s car, and he died a few weeks later at home, surrounded by his parents and eight siblings.
“Once people go through this with a family member, they want to take some action,” said Bisognano.
At its first meeting Thursday at the John F. Kennedy Presidential Library and Museum, the coalition is expected to clarify its path forward, with six goals in mind. They include ensuring that all adults have designated a health care decision-maker who knows their wishes, that medical professionals are trained to talk with patients about planning for serious illnesses and death, and that systems are in place to document and carry out patients’ wishes.
Blue Cross and the RxFoundation, which advocates for free or discounted prescription medications, will together put up $200,000 a year to support the effort, which includes repeating the survey periodically to measure the campaign’s effectiveness.
Each coalition member will take on a measurable task. For example, Mass Home Care, an association of agencies that coordinate support services for elderly people, pledged that one-third of its 3,000 board members and employees would designate a health care proxy, discuss their wishes, give the forms to their doctors, and convey their desires to their doctors.
“We wanted to get people comfortable having these discussions,” said Al Norman, executive director of the home care association. Then, he said, they will move on to encourage their clients to do the same.
Felice J. Freyer can be reached at firstname.lastname@example.org.