Mid-morning, Shawn Galbreath sits in her office in Saranac Lake, trying to think of a simple, no-nonsense way to explain High Peaks Hospice and Palliative Care.
"In my heart, it's about helping people in the last months of their lives to lead the best quality of life that they can," she says.
That may not sound complicated or controversial. We're all going to die sooner or later, and having someone there to help seems like a no-brainer. But Galbreath, who took over as executive director of the $3.1 million program last summer, says a lot of Americans hate to be reminded that they won't live forever.
Thomasina “Tomi” Gallagher waves to her husband of 66 years, Bill, through a mirror in their Saranac Lake home in August 2010. He died on Nov. 15 after struggling with a lung ailment, during which High Peaks Hospice helped the family.
(Enterprise file photo — Lou Reuter)
"We really are in big denial around death, and we don't like to plan for it," she says, sounding a little frustrated. "The public thinks hospice is just a place where people go to die. So they don't contact us until they think they're going to die imminently."
As a consequence, Galbreath says, the average High Peaks Hospice client only spends about two weeks in the program, from the time they sign up to the moment they pass away. That means many of the most important services are under-utilized.
"If we start earlier, we can help with symptom management and pain control. We can help people stay at home," she says.
This is the first of a two-part series on hospice care in the Adirondacks. The second part will appear in next Saturday's North Country Living section.
Experts say high-quality end-of-life care involves more than pills and doctor visits. It's a muddle of mundane chores and responsibilities, everything from negotiations with insurance providers to nutrition, funeral preparations and last-minute family arrangements. Hospice's team of social workers, nurses and volunteers can make this complicated process far more manageable.
"You're not alone," says Tomi Gallagher, from Saranac Lake, whose husband Bill passed away from a lung ailment last month after receiving care from High Peaks Hospice for half a year. "To know that you can call them anytime, so that you're not walking this path alone, this is the biggest thing they have going."
Tomi's daughter Gail, who grew up in Saranac Lake and now lives in Boston, says that before joining the program, her mother was often exhausted by the demands of caring for Bill around the clock. The hospice team helped to manage Bill's heavy oxygen tanks and sorted out his complicated pill regimen.
With those burdens eased, the family was able to enjoy their final months together, celebrating their 66th wedding anniversary and going for a final golfing trip.
"Two days before Dad passed, he looked at me and said, 'Thank God for hospice,'" Gail says. "He told me he could never get this kind of care in a hospital."
High Peaks Hospice - which has offices in Saranac Lake, Port Henry and Queensbury - regularly helps between 300 and 400 patients a year. But Galbreath says her staff has the capacity to work with far more clients. One major reason families put off joining is the misconception that all these services will be expensive.
"In fact, there is no cost to the patient," she says. "We take everyone. Medicare or Medicaid covers it for up to six months of care, as do most private insurance companies."
Much of the confusion about hospice stems from the fact that the concept is still fairly new. In the 1960s, doctors regularly concealed from patients the details of their medical conditions, even withholding the information that they might be dying. One of the pioneers of the reform movement was Zelda Foster, a nurse at the Veterans Administration hospital in Brooklyn.
"People started telling me about terrible dreams," she recalled, before her own death in 2006. "I found that most of them really did know what was going on, but they hadn't been allowed to express it to anyone, even to their loved ones."
Foster wrote a groundbreaking article in 1965, arguing that traditional medical approaches were making people miserable. In the years that followed, the hospice movement slowly revolutionized health care. Doctors are now trained to share far more medical information, allowing patients to make informed decisions.
In 1984, Foster finally convinced New York's legislature to include end-of-life care in the list of services covered by insurance programs. Two years later, in 1986, High Peaks Hospice and Palliative Care was formed in Saranac Lake by a group of volunteers using space donated by the Trudeau Institute.
The program eventually moved to offices located behind the Adirondack Medical Center and began expanding to cover a vast rural region, including all of Essex and Warren counties as well as parts of Franklin and Hamilton counties. With its 25-year anniversary coming next year, High Peaks Hospice now has a staff of 54 nurses and social workers, along with more than 175 volunteers.
"I've always found it tremendously rewarding to do this kind of work," says Fred Oberst, a former schoolteacher who chairs the High Peaks Hospice board. As a volunteer, Oberst is assigned to work with families, visiting them regularly, offering companionship and helping with chores.
Indeed, hospice workers regularly describe what they do as a special calling, a kind of mission work.
"When I'm in a patient's home and when I'm dealing with them, I love it," says Sarah Wardner, a nurse who has worked with High Peaks Hospice for 11 years. "I love the challenge of helping a family get through a rough patch."
Despite the obvious advantages, hospice can still be controversial. When Democrats attempted to include end-of-life counseling and care in last year's health care reform act, some critics described it as an effort to create "death panels," suggesting that elderly patients would be urged to forego expensive treatments as a cost-cutting measure.
"People tell me, 'I read about this in the newspaper,'" Galbreath says. "So I tell them it's not really like that. The truth is that most doctors and people of faith are open to what we do. We may have to clear up some misconceptions, so having the conversation is important."
For the record, High Peaks Hospice works hard to help patients make their own informed decisions about their medical care. The organization has also taken a firm stand against any form of physician-assisted suicide, publishing a statement on its website calling the concept "dehumanizing" and "incompatible with the healing role of physicians and with the accepted code of medical ethics."
The local program also works closely with churches and other religious groups in the community, making sure that those who are dying are in regular contact with the clergy of their choice.
"With all my patients, I try to figure out what it is that would benefit them most," says Jeff Gray, who serves as the staff chaplain. "For some, it's prayer or reading the Bible. For some people, it's just to go in and visit."
Over the next year, High Peaks Hospice hopes to expand with three new programs. One would provide special services for military veterans who need end-of-life care. The second would look at "ways to respond (to) those who do not need a hospital or nursing home, yet their own home is not an option," according to Galbreath. "An example is the House of Grace in Glens Falls." The last would add a program that would support people who have prognoses of seven to 18 months to live but are not yet eligible for hospice.
"We want people to have the opportunity for closure," Galbreath says. "If there are things they want to do before they die, we want to help with that. It could be making a trip or seeing family. It could be as simple as helping them sit in their garden."
(Editor's note: This article has been corrected regarding High Peaks Hospice's second and third projects planned for this year.)