People often have one regret about hospice care: that they didn't get it sooner.
The hospice system has been caring for terminally ill patients and their families for decades; 42 percent of the 2.4 million Americans who died last year were under hospice care at the end.
Now, hospices across the country are trying to rebrand and reposition themselves to reach patients earlier and erase the idea that turning to hospice is akin to "giving up."
"It's not about death and dying, but it's about improving quality of living, not just for the patient but for the entire family," said Mark M Murray, president and chief executive of the Center for Hospice Care, which serves Northern Indiana.
Hospice care, offered in the patient's home, nursing home, or specialized facility, is available to anyone determined by a doctor to be within six months of death. Medicare and insurance usually cover the cost.
Hospice care focuses on a patient's comfort, rather than aggressive cure-oriented treatment, and on bringing families together to begin healing — if there is enough time before the death.
Too often, though, patients and families aren't referred to hospice early enough to provide effective assistance for the family.
"The earlier you get people into care, the more we can impact caregivers' lives," said Lise Lambert, chief growth officer for HopeHealth, which this fall changed its name from Hospice & Palliative Care of Cape Cod.
HopeHealth is at the leading edge of a national effort to attract more people to the nation's 5,000 hospices, according to Don Schumacher, president and chief executive of the nonprofit National Hospice and Palliative Care Organization.
But there isn't a clear path to helping people understand what hospice can do for them.
"Some people are dropping hospice from their name; some adding it; some have added 'palliative care' to their name, others dropped it," he said. "The majority are engaging in redefinitional conversations."
HopeHealth also expanded its services by adding support for chronic conditions and spread its coverage area through Suffolk, Bristol, Plymouth, Norfolk, Barnstable, and Dukes counties. It is beginning an advertising and marketing campaign to let residents there know about its services.
Last year, another major provider, Hospice of the North Shore, bought out Partners HealthCare's hospices, and now covers 86 communities. To reflect its broader reach, the organization took on a new name: Hospice of the North Shore & Greater Boston.
However, a name change is not going to solve the essential problem hospices face: They are associated with death, said Susan Dobscha, an associate professor of marketing at Bentley University.
"The larger hurdle is going to be shifting awareness and acceptance of impending death, which is a tough nut to crack," she said.
It's not impossible, she said – think of the safe-sex campaign during the AIDS epidemic, and how former US senator Bob Dole changed the national conversation on sexual dysfunction when he appeared in Viagra advertisements.
But it may be harder to get Americans to talk about death, said Gary Gaumer, an associate professor of economics in the department of Health Care Administration at the Simmons School of Management. People will always hope they can beat the inevitable, he said.
"As long as people are buying lottery tickets," he said, and are willing to pin their hopes on unrealistic dreams, the challenge of marketing and selling hospice care is going to be tough.
Doctors are referring patients to hospice even later than they did a few years ago, said Gaumer, who has served on hospice boards for two decades. Fundamentally, doctors want to save people, not admit they can't, he said.
But that push to keep people alive at all cost can deprive patients and family members of valuable time to come to terms with the impending death, to work through family tensions, and to say goodbye, said Diane Stringer, president and chief executive of Hospice of the North Shore.
Reaching for hospice isn't giving up hope, she and others said, but instead actively choosing a different route.
"It's really about reframing hope," she said, "for quality time, to finish uncompleted business of the emotional and spiritual type, to bring closure to one's life."
Ironically, care that focuses on quality of life — rather than life extension — is also better medicine, recent studies show.
"The data is quite compelling that it improves the quality of life for both patients and families, and length of life for patients who are seriously ill," said Dr. Ira R. Byock, director of palliative medicine at the Dartmouth-Hitchcock Medical Center in Lebanon, N.H. "It's really truly better care."
In one 2010 study in the New England Journal of Medicine, for instance, advanced lung cancer patients who received care focused on quality of life and pain reduction lived three months longer than patients who received standard, aggressive medical care.
Being in the care of a hospice rather than in a hospital also significantly reduces medical costs, Byock said.
Gaumer said money may also be a factor in hospitals' postponing of hospice referrals. Patients who receive hospice care longer will require fewer costly hospitalizations.
"There is this underlying issue of all the money that's at stake," he said. "It's just something you don't talk about."
National health care reform is likely to play a role in the redefinition of hospice, though exactly how the Affordable Care Act will affect hospices remains unclear, Murray said.
The act promotes bigger-picture medicine and highlights quality of life, but it does not include hospice and palliative quality-of-life care as a required part of coverage package.
"It would be nice to be in the essential package so there's no chance that a state would cut a hospice benefit," Murray said. "Hospice under Medicaid has been on the chopping block in a number of states across the country."
For more than 30 years, professionals involved in hospice care have been frustrated by their inability to help patients more.
Now, they hope marketing efforts and the new national push for comprehensive care will finally solve their problem.
Gloria Cole of Weston said she has seen the benefits of hospice. When her 92-year-old father, Joseph DeSalvo of Wenham, was sent home from the hospital in May, she thought he had just weeks to live.
Now, with daily visits from hospice to manage his daily medications, help him shower, and give his wife a break, DeSalvo is doing better than he has in years, Cole said.
"They're the extended family you wish you had nearby," said Cole, whose only sibling died 15 years ago and who lives 45 miles from her father.
At first, DeSalvo resisted the idea of hospice. "That's for when you're dying," Cole said he told her.
But she reminded him of the stress of going in and out of the hospital every few months, as he had been doing for the previous two years.
"It's not that you're dying," she told him. "It's where do you want to get your medication, at the hospital or here [at home]?"
Karen Weintraub can
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