Forget that image of a hospice worker sitting next to a hospital bed in a dimly lit room. Today, hospice care is delivered everywhere from the golf course to the casino.
As they brace for the eventual needs of the aging baby boom generation, hospice providers are working to diversify their services and dispel misconceptions about what they do.
Chief among those myths is the notion that hospice consists of friendly visitors who sit in a darkened room and hold Grandma’s hand while she dies, says Robin Stawasz, family services director at Southern Tier Hospice and Palliative Care in upstate New York.
“It’s just not what we do. We come in and help people go golfing or go snowbird down to Florida, or go out to dinner several nights a week. We help them get to the casinos on weekends,” she said. “This is not getting ready to die. This is living — living now, living tomorrow, making the best possible life with what you have.”
According to the National Hospice and Palliative Care Organization, an estimated 1.58 million patients received hospice care from more than 5,000 programs nationwide in 2010, more than double the number of patients served a decade earlier. More than 40 percent of all deaths in the United States that year were under the care of hospice, which provides medical care, pain management, and emotional and spiritual support to patients with terminal illnesses.
Both figures have grown steadily and are expected to rise as baby boomers — the 78 million Americans born between 1946 and 1964 — get older.
“It’s a complicated time and an exciting time, but it’s also, in many ways, going to be a very daunting time for hospices to try to find ways to take care of all these people,” said Donald Schumacher, president and CEO of the national hospice group.
For the vast majority of patients, hospice means periodic visits at home from a team of hospice workers. A much smaller percentage receives continuous nursing care at home or inpatient care at a hospice house.
Medicare covers hospice care if a doctor determines someone has less than six months to live and if the patient forgoes any further life-prolonging treatment, though under the new federal health care overhaul law, it will experiment with covering both curative and supportive care at a number of test sites nationwide.
In the meantime, hospice programs are growing in number and scope. Recognizing that people are living longer and with complex illnesses, they’ve been branching out into other “pre-hospice” areas for patients who are not terminally ill. For example, some centers have become certified as so-called PACE providers, an acronym that stands for “program of all-inclusive care for the elderly.”
“Hospices are trying to throw a broader net out to provide services to people before they become eligible for hospice,” Schumacher said.
Another trend is focusing on patients with specific diagnoses. While hospices for decades overwhelmingly cared for people with cancer, by 2010, cancer diagnoses had dropped to 36 percent of patients served, prompting some centers to develop programs geared toward heart disease, dementia and other diagnoses.
“We are realizing that while our roots were really in oncology, that model is not the best response for all patients,” Stawasz said. “We needed to really look again at how we were doing things. It is not a one-size-fits-all kind of treatment plan,” she said.
After working with providers and patients to figure out where traditional hospice had been missing the mark, Stawasz’s agency launched its specialized program for patients who have suffered heart failure in 2009. While there’s usually a clear line between medical treatment and comfort care for cancer patients, things get blurry with other conditions, she said. So the agency started focusing on the reason behind each service, rather than the service itself.
“If the real focus is to help someone stay comfortable, then that’s hospice, even if it’s traditionally something a little bit more aggressive, such as IV antibiotics or IV diuretics or that sort of thing, or hospitalizations,” she said. “So if the goal is for comfort and the treatment has a reasonable expectation to provide meaningful comfort, then that’s hospice.”
Though he praises such programs, one expert in end-of-life issues says the hospice industry and American society as a whole are far from ready for the aging baby boom generation. Unless caring for people at the end of life becomes a larger part of the national agenda, the rising tide of elders is bound to result in a flood of unmet needs, said Dr. Ira Byock, director of palliative medicine at New Hampshire’s Dartmouth-Hitchcock Medical Center.
He points out that while the number of people using hospice has grown, the average length of stay actually dipped slightly in 2010 compared with the previous year, raising concerns that providers aren’t reaching patients and their family caregivers in a timely manner.
“We often quip that in hospice care these days, we’re doing brink-of-death care rather than end-of-life care,” Byock said.
When it comes to illness, dying, and death, the American mindset is “I don’t want to think about it.” But Byock hopes baby boomers will “take back” the end of life in the same way they took charge of the beginning by pushing for the natural childbirth movement and efforts to bring fathers into the delivery room.
“It was driven by the boomers as citizens and consumers; it was an advocacy movement. A very similar thing needs to happen now,” he said.
Hospice workers say they are more ready than other health care providers to deal with baby boomers and whatever changes health care reform brings because they’ve been working with limited budgets for years.
“We’ve been meeting that triple threat of providing better care with higher patient satisfaction for less money,” Stawasz said. “I think hospice is perhaps standing as a model for others as we are dealing with the challenges of the increased needs that baby boomers represent.”
Laurie Farmer of the Concord Regional Visiting Nurse Association agrees. And she adds that hospice is all about providing individualized care, something that baby boomers likely will demand.
“The baby boom generation comes as very educated consumers, and so we are feeling that we have been meeting that challenge,” she said.
At age 70, Liz Murphy, of Deerfield, N.H., is a few years older than the oldest baby boomers. But like many of the baby boomers served by the Concord hospice program, she did her homework before deciding several weeks ago to move into the program’s hospice house.
Murphy, a longtime Statehouse lobbyist, was found several years ago to have an extremely rare cancer of the connective tissue that settled mainly in her bones but also has spread to her brain, liver and other organs. She started considering hospice after a spate of surgeries just weeks apart resulted in no improvements.
Murphy said she knew where the hospice house was, but beyond that, knew little about it before she started looking into it. But once she did, she made her decision quickly.
“I talked it through with my husband and my children and anybody else who I thought would have an interest in it, and I feel as though I got information from as many people as I needed. I came and looked at it, and I’m very happy with it,” she said.
“It’s been great. I love the place. I’ve been very fortunate that the people who are here are people who are happy to work with me, and are interested in working together with my family, my husband and me to give us the program we’re interested in.”