Addressing the Stigma: Local Efforts Help Cape Codders Talk About Aging and Dying

Nov 15, 2016

About a dozen people are gathered at the Barnstable Senior Center, sipping coffee and eating pie. They’re not here to socialize or play games—they’re here to talk about something many consider a taboo subject.

This is a Death Café, a free-form conversation about death guided by bereavement coordinator Brooks Reinhold. If the idea of a Death Café sounds strange, Reinhold hopes people aren’t put off by the name.

“The whole purpose of the Death Café is to sort of demystify death and dying for people,” Reinhold said. “We live in a culture that’s very death-phobic in a lot of ways.”

Talking about our mortality is hard. But if we avoid talking about the issues that arise as we age and get sick, we can greatly increase the chances of our own suffering, and that of our families, too.

In the next installment of our series, "Our Mortal Lives: Confronting Death and Dying," WCAI’s Kathryn Eident looks at efforts to make it easier for people not only to talk about death, but also to prepare for if, or when, they become critically ill.

People can talk about whatever comes to mind at a Death Café. Today’s topics range from whether there’s an afterlife, to the stresses of planning a funeral, which these days can be as complicated as planning a wedding.

Death Cafés started in Europe in the early 2000s, when a Swiss sociologist named Bernard Crettaz decided to bring people together in a public place to make talking about death more comfortable. The idea spread. The first death cafe in the U.S. started in Ohio in 2011, and came to Falmouth in 2013. Death Cafes have popped up in other Cape towns since then.  

Reinhold says she’s seen mostly older people attend Death Cafés on Cape Cod, but sometimes younger people come, too.

“We get people who recently lost someone. We have people that come with a caregiver because they are facing their own health decline. People come because they want to do their end of life planning, or they come to have those conversations they feel they’re not able to have,” she said.

We live in a culture that's very death-phobic in a lot of ways. —Brooks Reinhold

Death Cafés are gaining popularity at a time when an unprecedented number of Americans are caring for their aging parents, or are reaching the end of their lives themselves. Some people want to talk about these issues with their doctor. But research shows that fewer than a quarter of physicians initiate the conversation with their patients.

Dr. Dan Arnold has seen the consequences first-hand. When he was an emergency room doctor at Cape Cod Hospital, he saw families agonize over what to do for a sick loved one. Sometimes they chose care that actually caused more pain rather than relieve suffering. Take, for instance, CPR.

“It’s not like it is on TV—David Hasselhoff doesn’t run in and pump on your chest three times and you jump up and everything is well,” he said. “The likelihood of surviving to any quality of life is actually much lower than people understand.”

About a fifth of people who are hospitalized survive resuscitation after cardiac arrest. They often have broken ribs and other complications that can leave them worse off than before.

As a result, Arnold now makes a point of talking about end of life care with older patients during their annual physical in his practice as a primary care doctor in Hyannis.

“That discussion, while it’s a tough discussion to have with a patient, generally goes over well when you start to talk about those things,” he said. “[For instance] whether or not they’d want feeding tubes. I’ve never met anyone that says, ‘you know, I’d love to be kept alive on a feeding tube.’”

Arnold also spends time explaining a suite of paperwork people can use to dictate their wishes to their families and doctors.

Cape Cod Healthcare Chief Medical Officer Donald Guadagnoli wants to make it easier for everyone to plan for medical emergencies and end of life care. He formed an initiative with a short-term goal of getting 90 percent of patients in his system to designate a health care proxy over the next five years. His other goal is a bit more ambitious.

“We should be able to have people die where they choose to die,” he said.

Achieving that goal will require a lot of education—for patients, their families, and medical providers. But Guadagnoli says the rewards would be huge.

“That can bring a real sense of peace to everyone at what’s a very difficult time for family members, spouses and caregivers,” he said.

He wants churches, senior centers, and libraries to host discussions about end of life care and advance directives long before people get sick. Registered Nurse Tina Soares works with Guadagnoli, and she’s helping those groups learn how to guide the discussions.

“You can start early with some of the basics and take the conversation deeper when you need to,” she said.

She also wants medical providers to feel more comfortable bringing up the subject with patients.

“It’s just as scary sometimes for them to have that conversation but, providing the tools to shift the conversation to ‘I can longer fix’ to ‘Here’s your options, let’s talk about that’” she said. “Reframing that information really opens the door.”

Soares hopes that one day talking about death will become just another normal discussion.

“The end goal is to respect choices and preserve dignity. And at the end of life, all of us can look back and say ‘we did it. We honored mom’s or dad’s choices,’” she said.  “Clinicians can say ‘we followed through with what they wanted.’”

Back at the Death Café at the Barnstable Senior Center, the conversation has moved on from death to other subjects that can also carry a stigma—like sex. The discussion prompts a little reminder from Bereavement Coordinator Brooks Reinhold.

“We’re not having a sex café,” she said, and everyone laughed.

Sometimes, a little humor can make a difficult conversation a little easier.

All our reporting for the series Our Mortal Lives can be found here.