Baby boomers are aging, which means more people are facing tough choices about growing old. This is especially true on Cape Cod, where the number of senior citizens is about twice the rest of the state.
Some medical professionals on the Cape are taking on the issue and working to change how their community thinks — and talks — about end-of-life care.
‘More Like Doing Something To A Patient Than For A Patient’
When Donald Guadagnoli started as the chief medical officer at Cape Cod Healthcare in 2012, he says he knew there was a problem.
He’d often go to a patient’s room and find medical staff distraught “because they felt like what they were doing was more like doing something to a patient than for a patient,” says Guadagnoli.
At the end of a patient’s life, doctors and family members often have no idea what a patient wants. What prolongs your life can hurt your quality of life, and the choices for patients and their relatives are far from obvious.
Yet conversations about these choices rarely happen.
“Most people feel it’s really important to talk to their physicians about this, but only 15 percent have done so,” says Andrew Dreyfus, who heads Blue Cross Blue Shield of Massachusetts. “There’s this huge gap between what people want and what they actually do.”
Dreyfus says this is partly because there’s a lot of fear and stigma. He says patients and physicians generally don’t want to talk about death.
Yet staying quiet has consequences. In a recent survey by the Massachusetts Coalition For Serious Illness Care, one-third of state residents who had a family member die in the past year said the patient’s medical preferences were not fully followed.
But Dreyfus, who is part of the Coalition, says things are beginning to change – and “Cape Cod is a shining example.”
“Have You Had The Conversation?”
In a small conference room at Mashpee Senior Center, Tina Soares addresses five women: “Does everybody have a health care proxy?”
Soares, who is a nurse at Cape Cod Healthcare, is leading the health facility's initiative to transform end-of-life care.
The goal is to get every single adult on the Cape – more than 200,000 people – to have a conversation with relatives or close friends about the care they want and to fill out a health care proxy form.
In order to accomplish this, Soares has brought together a team of people — clergy, bankers, translators, first responders, janitors and others — to receive training about preparing for end-of-life care and help them communicate the information to their networks.
In addition, Soares and her medical team are going out into the community to encourage people to talk about end-of-life care decisions.
“My next question is: Who is your agent? Does your agent know they’re your health care proxy?” Soares asks.
All five women have picked their proxy — affectionately called an "agent." Estimates suggest about half of the residents in Massachusetts have filled out the health care proxy form.
But Soares is quick to say, "Just because you've completed it doesn't mean it's going to help.”
“Too often the documents are completed, they're put away in a safe deposit box, and then nobody talks about them," Soares says, explaining that people need to talk to their proxies about their preferences because it's not possible to write down all of the potential scenarios.
Albina Hennessey, one of the women taking notes, knows how hard this can be. Hennessey picked her children as proxies and made detailed notes, including the dress she’d like to be buried in.
“I have so many things written down, so that there won't be any confusion. Hopefully not.”
But she hasn’t talked through it with all of her children. She says her son has PTSD after 30 years in the military, and she doesn’t want to burden him.
“I'd call my daughter up, and she’d say, 'Oh Mom, I really don't want to go to that right now.'”
Hennessey says she’s begun to talk with her other daughter and is planning to talk with her daughter-in-law, but it’s not easy. Soares knows this, so she has some tips:
First, start talking early — long before it's a crisis.
Second, chat regularly, it doesn't need to be a big family meeting.
Third, start by talking about life not death. What do you really like? And if a medical procedure prevented you from doing that thing, would it be worth it?
Yet as Cape Cod Healthcare urges everyone else in the community to start talking, Guadagnoli admits the medical community has their own communication problems.
“Unfortunately, most of the records have been built as silos that can't really talk to one another," says Guadagnoli.
When people submit those health care proxy forms or fill out advance care directives, not all medical professional can access them. What you give to a skilled nursing facility may not be shared with your hospital.
But medical experts say if anyone can figure out this conundrum, it's Cape Cod. The majority of residents are cared for by just a few big providers. Together, those providers are hoping to set a national example for how to talk about the end of life.