Doctors told 51-year-old Bill Sauve of Grand Isle he had three weeks to live.
Divorced, he stayed with his 86-year-old mother who was showing signs of dementia. But nothing more could be done for Bill’s liver. He couldn’t take care of his elderly mother anymore, and she couldn’t take care of him.
Fortunately, the 13-bed Vermont Respite House in Williston was the answer for Bill, who, in February 2014, fit its criteria for patients with six months or less to live.
Bill’s sister, Denny, recalled a Respite House volunteer asking Bill if he wanted anything within the first hour of his stay. His request of a cheeseburger was fulfilled within 15 minutes.
“That sealed it for me,” Sauve said. “In their last days, you want them to know that they matter.”
But many Vermonters like Bill and others approaching the end of their lives statistically don’t use hospice: A 2012 Dartmouth Atlas of Health Care study found Vermont has the fifth lowest hospice utilization rate in the nation at 32 percent. The national average is 49 percent; at 65 percent, Arizona’s rate is the highest.
Yet Vermont might be one of the best candidates for these services. Census data shows the state’s population of seniors is expected to rise by nearly a quarter by 2030.
Locally, Milton’s population reflects the aging trend, too: From 2000 to 2010, the 65-plus senior cohort here grew by 3 points, comprising 8.8 percent of the town’s residents, the 2013 Comprehensive Plan shows.
And the town is trying to keep up. In response to 2005 Census data projections, Milton incorporated elderly housing complexes into zoning, and by 2013, the Development Review Board approved 71 new units of senior housing. Still, waiting lists persist.
More and more Vermonters are facing end-of-life decisions, yet only a third of them use hospice care. Last October, the Visiting Nurse Association, a nonprofit home health and hospice agency serving Chittenden and Grand Isle counties, launched a statewide study to determine why.
Through surveys and focus groups with residents and health care providers, researchers wondered: Were doctors reluctant to refer to hospice? Did patients with certain diagnoses tend to avoid it? Do people have enough information about the service?
Some theories were ruled out right away, said Christine Werneke, VNA vice president of business development and marketing, who oversaw the study. Others were confirmed, particularly about doctor referrals.
“For physicians, it’s not so much that they don’t want to refer, it’s the question of when,” Werneke said, which, when it comes to end-of-life decisions, “it’s always too early until it’s too late.”
That’s what interests Dr. Lauge Sokol-Hessner, a hospitalist at Beth Israel Deaconess Medical Center in Boston, who successfully implemented an initiative to get doctors, patients and families talking about end-of-life wishes. He will present his findings to Vermonters on October 27.
Sokol-Hessner said the vast majority of patients care what happens to them, but few express these wishes to their family, and fewer still talk about them with their doctor.
“It begs the question: How are we going to get our wishes respected if nobody knows what they are?” he asked.
This realization spurred The Conversation Project, a nationwide initiative designed to jumpstart these sensitive conversations. For providers, Sokol-Hessner pioneered a parallel initiative called Conversation Ready, which promotes the “four Rs”: reach, record, retrieve and respect.
The program urges doctors to begin these talks and record them for later retrieval. Health care proxies and advanced directives are also key elements of the process, Sokol-Hessner said, meaning patients should designate a decision-maker should they become incapacitated and outline their wishes in a legal document.
But Sokol-Hessner maintains end-of-life care is more than a series of medical decisions.
“The end of life is really about life,” he said. “[Hospice] is focused on making the best out of every day, even if the number of days is limited.”
Still, he recognizes the difficulty of having frank discussions around death.
“We don’t like to acknowledge endings; we don’t like to lose things,” he said, later adding, “Physicians worry about saying those things, because they don’t want to take away hope.”
Physicians need to shift their understanding of their role from prolonging life to enhancing it, he added, which may be a tough pill for some to swallow.
Werneke cited movements to normalize discussions about death and dying. Instead of a morbid dialogue, she said, it becomes “talking about living until you die.”
That means asking questions like where a loved one would want to stay, if they’d move to ensure better care or if they’d prefer staying at home regardless, Werneke said.
Relaying end-of-life wishes while you’re healthy can be a gift to your family, Werneke added, since it erases their burden of worrying whether they made the right choice.
“The key is to recognize that there actually are ways to have that conversation that strengthen the relationship, that work past those fears,” Sokol-Hessner said. “By actually talking about it, we can get closer to people.”
When Sauve’s mother, Pauline, was diagnosed with end-stage ovarian cancer on top of her worsening dementia, Sauve already knew her mother wanted to stay home. Again, she turned to the VNA.
A nurse came twice a week to assist Sauve with her mother’s care and anything else she needed. In some instances, Sauve said, the nurse helped with housework.
When Sauve had questions about administering her mother’s morphine at midnight, she called the 24-hour VNA hotline to help her through it.
“It is scary when you’re by yourself,” she said. “I imagine a lot of people are.”
The message Sauve, Werneke and Sokol-Hessner all hope to relay: You don’t have to be.
“Hospice is person-centered care … it’s not attacking the disease or illness,” Werneke said. “Hospice is really about taking care of the individual’s needs, clinically, individually and spiritually.”
At-home assistance enabled Sauve to care for her mother until she died last month; the year before, she saw her brother’s needs met firsthand at the Respite House, where he lived three weeks longer than his initial prognosis – a testament to the care and compassion he received there, she said.
“You didn’t worry about anything, because all you had to think about was being there with him,” Sauve said. “It gave us time.”
The intimate, personalized care Bill received left such an impression that Sauve would prefer to go there when the time comes.
And though hospice utilization may be low statewide, need for inpatient end-of-life care is up: the Respite House saw a 46 percent increase in demand over the last 10 years, the VNA reported.
To address that growing need, the VNA recently announced plans to build an expanded 21-bed facility in Colchester, replacing the Williston home. The Green Mountain Care Board approved the project last month, and the VNA expects its completion by the end of next summer.
That means more Vermonters will be able to live out their last days like Bill. He died in March 2014.
“It was just such a nice way to spend his last month and a half,” Sauve said. “We were just there to enjoy what time he had left.”
Werneke encourages anyone with questions about end-of-life care to contact the VNA – a call Sauve is thankful she made.
“They explain things to you so that you understand,” Sauve said. “It’s not something you should be nervous about.”
Attend Dr. Lauge Sokol-Hessner’s free community presentation, “Changing the Landscape of End-of-Life Care in Vermont: Strengthening the Patient-Physician Relationship” on Tuesday, Oct. 27 from 7 – 8:30 p.m. at the DoubleTree Hotel by Hilton in South Burlington. The VNA will present Vermont Hospice Study findings on Tuesday, Nov. 10 from 2:30 – 4:30 p.m. at the Capitol Plaza in Montpelier. To learn more about hospice, visit www.vnacares.org.