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By Elana Gordon
Everyone benefits when people have plans for the ends of their lives, but many would rather not talk about it.
When the Mayor’s Wellness Campaign of New Jersey approached Gloucester Township’s mayor, David Mayer, about leading a rather unusual wellness initiative in his town of about 70,000, he immediately signed on.
Conversation of a Lifetime aims to encourage people to engage in advanced care planning with loved ones and health providers.
These can be uncomfortable conversations that go over everything from what life support means to you to who’d make decisions about your care if you couldn’t.
For Mayor Mayer, the impetus to get involved is deeply personal.
“We went through this process last year with my mother. She past in July,” Mayer recalled. “And we were confronted with many decisions—my father, sister and I—that it’s difficult to make when you really, you don’t go through life talking about them.”
As his mom’s diabetes complications grew worse, Mayer and his family faced situations involving hospice and nursing homes they’d never anticipated. Figuring out what mom’s wishes were each step of the way, it was really tough.
Mayer’s experience is not unusual. Research is also finding that poor planning can lead to a lesser quality of life, unnecessary care, and emotional trauma for everyone. To kickstart more conversations, Mayer and mayors of two other New Jersey towns—Tenafly and Princeton—launched this pilot, Conversation of a Lifetime, campaign last month.
While changing an entire culture around end-of-life planning has proven challenging and at times politically hazardous, organizers have found inspiration from one town that has seemed to make it work.
Lessons learned from La Crosse
Unlike the rest of the United States, just about everyone in La Crosse, Wisconsin has an advanced care directive and is talking with loved ones, medical providers and even neighbors about their wishes. But it wasn’t always this way, and it wasn’t a mayor who’s largely credited with spurring the change.
“I just raised the question, ‘why do we do things this way?'” said Bud Hammes, a clinical ethicist at Gundersen health system, one of the main health systems in town.
Hammes noticed several years ago that no one at the hospital was aware of people’s preferences, even for longtime patients.
“That was bad for families, bad for physicians, bad for everyone who was involved with care for that patient,” he said.
One of Hammes’ biggest realizations, though, was that people don’t even know how to have these planning discussions, even if they’re willing. Telling tell your family that if you become a vegetable to turn off life support, for example, just doesn’t cut it.
“In fact, that statement we’re pretty clear will not be helpful because when the time comes and there’s been a serious injury, family members will say, ‘What did dad really mean when he said being a vegetable? Was it this or something else?’ And two family members may disagree.”
Hammes explained he then created a new kind of role in La Crosse: an advanced care planning facilitator. These were nurses and social workers trained to help patients and families actually engage in these conversations and make sure the health system was also aware of those wishes. The discussions could take upwards of an hour.
The model spread throughout the hospital and then throughout town. He said the combination of having trained staff available to guide people through these conversations and a health system that was on board, willing to invest in the program make it known what those patients wishes are if they become ill, led to some astounding changes.
A last count, of every adult death in a hospital setting in the county, “we found that 96 percent of that population have a written advanced directive in their medical record and it’s accurately followed 99 percent of the time.”
Hammes thinks that written resources and even public campaigns may be helpful for people in their advanced care planning process, but the conversation is key.
“Just completing legal documents as some kind of fill-in without any conversation, without any thoughtfulness to it is not helpful and can actually make things worse,” he says, adding that “I’m sure many people will benefit from the public engagement and the prompting to have the conversation, but our experience is that people need some personal assistance, some guidance from someone who understands the issues.”
Just getting started
New Jersey’s Conversation of a Lifetime campaign is still in the very early stages. Mayors of the three towns have formed local taskforces made up of clergy, community and health care leaders. Plans for movie nights and reading groups are in the works throughout the year.
In Gloucester Township, a ‘Before I Die’ conversation wall—a big chalkboard where people can write about wishes or any other hopes they have before they die—is starting to make appearances at community events like one last Thursday morning during the town’s second annual prayer breakfast.
“It’s just a way to get a conversation going as to what we want to accomplish in our lives and what we want to communicate to our family,” Mayer told about 60 attendees of the breakfast during a speech. “It’s really about living, the decisions that we have to make. It’s about talking to our family about these very important and delicate decisions.”
After the breakfast, Dorothy Rouh was one of several attendees who walked up to the board, writing that she wishes to see every dog and cat have a home. She said the board and the mayor’s comments were uplifting.
“I think it’s an important thing,” she said. “You should have a plan with your family.”
Joe and Maryann Gormley, retired computer programmers who live a few blocks away, had already read about the mayor’s efforts in a church bulletin before coming to the prayer breakfast.
“So many things in life you procrastinate on, and boy is that an easy one to procrastinate on,” said Joe Gormley. “So bringing it to forefront is a great idea.”
“Yep, I agree,” said Maryann.
As for whether they’ve had conversations with loved ones and health providers about end of life decisions?
“I’m one of those ones in denial and procrastinating,” said Joe, laughing. “So any prodding you can get is a good idea.”