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Planning For The End: Talking About Death Often Stands In The Way

Todd Bookman

A survey from the National Hospice Foundation finds that Americans are more comfortable talking to their kids about sex than they are talking to their elderly parents about death. End-of-life remains simply a taboo subject in many households. But these important conversations are necessary to create the living wills that can help keep dignity in dying. We continue our 3-part series on advance directives with this look at efforts around the state to get more people talking, and planning, for their end-of-life.

For twenty years, Roy Quimby was a volunteer firefighter in the town of Unity, New Hampshire. He boasts about running into buildings others ran out of.

Now at 66, he’s got a new battle: cancer.

“All of sudden, I was having some abdominal pain, we go in for a laparoscopy…no wrong word. An endoscopy.

“We’ve had a lot of ‘oscopies’,” he jokes.

Quimby beat esophageal cancer a few years ago. But it’s back in his bones, ribs, spine, pelvis, and femur.

There’s no prognosis: 2 weeks to 10 years is the best doctors can offer. So for now, he’s on chemo, and on his motorcycle, a Harley he rides to all his medical appointments.

“We are not going to do any heroics to keep me going,” says Quimby. “My wife is going to make the decisions. If I’m going to be on feeding tubes, breathing tubes, everything else, there is no sense in me being here. I’ve always been active, I plan on staying active. If I am going to sit around and stare at a ceiling, I don’t need to be around anymore.”

Quimby has an advance directive to ensure these wishes are carried out. He keeps a copy in Florida where he spends his winters, and one at Norris Cotton Cancer Center in Nashua.  

A Focus On Planning

If he had one was actually one of the first questions staff at Norris Cotton asked: the entire Dartmouth Hitchcock system is pushing its importance. D-H has volunteers to help people complete the document, and a team that works to ensure a patient’s wishes are being followed.

Dr. Sharona Sachs runs the Palliative Care group at the Lebanon campus. She encourages open conversations before serious illness or injury, so that when certainty is needed, it’s there.

“For each person, what defines you and what do you most value and what are the outcomes that you would find acceptable or unacceptable? And spending some time really working through that with the people that are going to represent you,” says Sachs.

Each morning, Sachs and her team sit down to discuss patients who may die in the next few months. Many of the cases are profoundly sad, and many of the families don’t have advance directives to guide the process.

"It is uniquely human to believe that mortality happens to other people."

“It is uniquely human to believe that mortality happens to other people. And there is some magical thinking that says if I begin to write my contract around what my mortality might look like, it might actually happen to me, and that would be terrible,” she says with a laugh.

“And so, I think there is a natural avoidance of issues around death and dying.”

Only about 1 in 4 adults in New Hampshire have advance directives—on par with national averages.

The federal government has tried to boost that number. The 2009 uproar over so-called ‘death panels’ was in reaction to language in the Affordable Care Act. The basic plan was to reimburse doctors for the time they spent consulting with Medicare patients on end-of-life options and advance care planning.

Back in 1990, there was another effort started: something called the Patient Self Determination Act. That requires most hospitals and nursing homes to provide information about advance directives to patients upon admission, though it’s usually done in a cursory way.

Good Customer Service

At Maplewood Nursing Home in Cheshire County, staff do more than just hand over a pamphlet. Laraine Howard works in admissions.

“The biggest barrier to doing an advanced directive when someone comes to a nursing home and don’t have one is residents will sometimes worry that their doctors haven’t told them something. ‘Why are you talking to me about death right now?’ or that their family is keeping something from them. And then it scares them,” says Howard.

If someone is too frightened to discuss the document at first, she’ll usually try to bring up the issue again a few weeks later. With clear information about the document’s purpose, most people come around.

Maplewood has near 100% participation.

“It is just good customer service to our residents. We want our residents to have the best life they can, and advance directives, I truly believe, is part of it.”

Getting The Conversation Going

Nursing homes are one thing. In the broader community, outreach can be a lot harder.

“Our fliers are saying ‘Start the Conversation.’”

Carol McShane is with TLC Nursing Associates. They provide home-care services for people in New Hampshire and Vermont, and they’re launching something called the Upper Valley Conversation Project. It’s basically a series of meetings and events to encourage people to start advance care planning. Experts are on hand to answer questions; there are guides and tools to help people talk about sensitive topics.

“We are not having a party,” says McShane. “We’re not talking about stuff that is kinda fun to talk about. Life is fatal. We are all going to get to that point.”

McShane says a lot of people don’t fully understand what can happen if an advance directive isn’t on record, especially during an emergency.

Tomorrow, we’ll take a look at those risks, and the complicated legal system some families find themselves in.

Part 1: New Hampshire's Advance Directive Gets An Update

In Plain Language: A Glossary Of Terms For End Of Life Planning

Todd started as a news correspondent with NHPR in 2009. He spent nearly a decade in the non-profit world, working with international development agencies and anti-poverty groups. He holds a master’s degree in public administration from Columbia University. He can be reached at tbookman@nhpr.org.
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