GREENFIELD — When his mother was dying in the hospital after suffering a stroke, Al Norman realized just how important conversations about end-of-life medical care can be.

By the time he got to her side, she was nearly brain dead, but was being kept alive by a heart-lung machine.

“Basically they told me that without this machine, she would not be able to breathe because her brain was not sending any signals to the rest of her body,” Norman said. “I was able to say (to turn off the machine) because she had told me many times, ‘I don’t want to be prolonged by a machine.’ I was able to make that decision peacefully and be with her when she died, and not agonizing over whether I did the right thing.”

Norman, a Greenfield resident and executive director of Mass Home Care — an association of 29 agencies that coordinates support services for the elderly — is committed to furthering the often-difficult conversations about end-of-life wishes.

A new statewide survey by the Massachusetts Coalition for Serious Illness Care, of which Mass Home Care is a founding member, has found that 85 percent of Massachusetts residents believe that physicians and their patients should talk about end-of-life care, but only 15 percent have actually had such conversations.

Furthermore, it found that almost half the population have not discussed their wishes for serious illness care with others and more than half have not named a health care agent (or proxy) to make such decisions.

The coalition, consisting of 58 health care groups, met in Boston on Thursday for the first time. During the event, Mass Home Care pledged that one-third of its 3,000 employees and board members from across the state would sign a health care proxy form, one that names an agent to make decisions in the event a person is unable to do so themselves, and have a conversation with their doctors about end-of-life care.

Among Mass Home Care’s agencies is LifePath, based in Turners Falls.

“The long and short of it was the purpose of this new coalition was to make sure that people’s health care, at all stages, is compatible with their desires and preferences,” Norman said. “I emphasize the ‘all stages’ because this really is not about the last part of your life — it’s about when you’re in your 40s, when you’re in your 20s — it’s about a health care system that listens to you and asks you about your goals.”

He said Mass Home Care will begin working on its pledge over the summer and hopes the organization will be “well on its way” to reaching the goal by fall.

LifePath workers, for example, will be trained on how to have conversations about health care proxies and life-sustaining treatments with the hope they will go home and talk to their families about it. Further down road, Norman said those employees will have similar discussions with the elders they work with.

He said other health care groups involved in the coalition came up with other, similar goals. The Massachusetts Medical Society, for example, will encourage its doctors to make health care proxies and conversations about end-of-life medical treatment their standard practice, according to Norman.

The coalition also decided Thursday it would like to have at least 80 percent of the state’s population sign a health care proxy a year from now, he said.

If a doctor doesn’t know what their patients’ last wishes are, those patients could end up being subjected to costly and wasteful medical practices, according to Norman, such as being hooked up to machines that aren’t going to add to their quality of life.

“Everybody admitted that was a pretty ambitious goal, but they’re really trying to make a significant change in health care to give consumers more control,” Norman said. “These are the things, if you haven’t said anything, your doctor won’t know what kind of care you want.”

You can reach Aviva Luttrell at: aluttrell@recorder.com
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