Metro

New coalition confronts fear, distrust in end-of-life care

The inaugural meeting of the Massachusetts Coalition for Serious Illness Care brought together 58 organizations on Thursday to talk about improvements to end-of-life care.
Dina Rudick/Globe Staff
The inaugural meeting of the Massachusetts Coalition for Serious Illness Care brought together 58 organizations on Thursday to talk about improvements to end-of-life care.

The first question from the audience cast a spotlight on a big challenge facing a new group trying to improve end-of-life care.

Were financial incentives “driving the train,” asked Susan Fendell, senior attorney with the Mental Health Legal Advisors Committee.

Her question to the Massachusetts Coalition for Serious Illness Care, midway through its inaugural meeting Thursday, went to the heart of the fear and distrust that has often made it so hard for people to talk about their goals and preferences.

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Speakers denied that money was the motivator. Leslie May-Chibani, assistant director of Minuteman Senior Services, said efforts that reduce costs — such as preventing people from repeatedly returning to the hospital — also amount to better care for patients. “Do you really want to go back to the E.R.?” she said.

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Ellen Goodman, director of the Conversation Project, a group promoting discussions about the end of life, said advocates need to make clear they’re not trying to cut back on care, but rather “to get you exactly what you want.”

The coalition of 58 organizations, organized by Blue Cross Blue Shield of Massachusetts, wants to ensure that all adults in Massachusetts can easily convey their wishes for care at any stage of life, and that those wishes will be followed. Coalition leaders showed about 360 attendees at the John F. Kennedy Library the results of a survey, which found most state residents are not preparing for illness and death, and their loved ones often do not get the care they want near the end of life.

Dennis Heaphy, policy analyst with the Disability Policy Consortium, told the gathering that many people — such as those with disabilities or psychiatric illness, minorities, and the poor — have good reason to distrust the medical establishment.

“How do we make sure that my life, as a person with a disability, is valued equally as the life of somebody without a disability?” he asked.

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Heaphy also raised another common theme of the meeting — the need to make planning for illness and death “a seamless part of the conversation over the course of a life span.”

Speakers and participants agreed that critical decisions — who will make health care decisions for you when you cannot, how you want to be treated if seriously ill — should be made long before a crisis occurs. They talked about making such choices a routine occurrence separate from medical events, perhaps linked to graduating from high school or getting a driver’s license.

And the conversations must be uncoupled from talk about medical procedures, focusing instead on how to make each day meaningful, said Dr. Lachlan Forrow, director of Ethics/Palliative Care Programs at Beth Israel Deaconess Medical Center, who spoke on the afternoon panel.

He described the case of an elderly patient with advanced heart failure who insisted he wanted to be fully resuscitated should he start to die. His physician felt it would be cruel to perform CPR on this frail old man — until he asked the man, “Tell me about what matters to you.” Turns out the man’s granddaughter was about to give birth to his first great-grandchild, and he wanted more than anything to see the baby. After the great-grandchild came to visit, the man started talking about hospice care.

Forrow told another cautionary tale: The son of a very elderly man who’d had a stroke was insisting on life-prolonging care that others found appalling. But then they learned why. The man was a Holocaust survivor who had sworn to himself that he would “fight for life to the very end no matter what,” to honor those who had died.

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Especially as new payment methods reward physicians for doing less, Forrow said, “There’s a real risk that we’re going to be doing fewer things than people would have wanted.”

For many, he said, hospice care and less intervention provide the ideal exit; but for some, prolonging life is the goal.

Felice J. Freyer can be reached at felice.freyer@globe.com. Follow her on Twitter @felicejfreyer.