Misconceptions about the work they do are not uncommon, but increasingly, hospice workers are there to help patients and their families through the final phase of life.
A public opinion survey conducted for the National Hospice Foundation in 1999 showed that 80 percent of the respondents did not know the meaning of the term hospice. Few mentioned pain control (2 percent) or the idea of providing support for the patient and the family (7 percent) in their definitions of hospice.
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“The vast majority of people think that hospice is a place to go,” said Herbert Sawyer, a board member of Home & Hospice Care of Rhode Island (a Lifespan partner) for the last eight years. “Hospice patients are cared for in their own homes or even in nursing homes. Hospice is more of a conceptual idea.”
According to the National Hospice Foundation’s Web site, the hospice movement in the United States began in 1974 with the establishment of the Connecticut Hospice in New Haven. The hospice was founded by Dame Cicely Saunders, M.D., (who opened Saint Christopher’s Hospice in 1967 in Sydenham, England), and has become the model for comprehensive whole person and family care at the end of life.
Statistics from the National Hospice and Palliative Care organization (NHPCO) indicate there are more than 3,100 operational or planned hospice programs in the U.S. today.
In 1999, nearly 2.4 million Americans died. Less than 50 percent died in a hospital; 25 percent died in a nursing home; and 25 percent died in their own home or elsewhere. For those who were served by hospice care, 78 percent were able to die at home or under hospice care in a nursing home.
Based on patient counts supplied by member hospices and estimates for other hospice programs, NHPCO estimates that hospices admitted 700,000 patients in 1999; 600,000 Americans died while receiving hospice care in 1999 (or 29 percent of all Americans who died that year), up from 540,000 in 1998.
Founded in 1976, Home & Hospice Care of Rhode Island works with patients who have what will, in all likelihood be a terminal illness. Sawyer said the organization is the third oldest of its type in the country.
Sawyer said one of the most important services hospice doctors and nurses provide is the management of pain for patients with terminal conditions like cancer, AIDS and congestive heart failure.
The home care branch of the organization serves patients still seeking treatment. It is “designed for families who feel they are not ready for hospice treatment,” said Sawyer.
Patients can later transition into hospice treatment, if necessary, with the same team of professionals.
A hospice team is made up of a hospice physician; a primary nurse, who acts as the case manager for the patient; certified nurses’ assistants (CNAs) who help care for the patients; a social worker; a bereavement counselor, who works with the patient and the patient’s family for as long as necessary after a patient dies; and a volunteer, who helps where necessary, often by giving caretakers a break or running errands.
Home & Hospice Care of Rhode Island President and Chief Executive Officer Analee Wulfkuhle said her organization serves about 1,200 patients annually.
Instead of the nursing shortage that has garnered both local and national press attention, Wulfkuhle said the primary challenges facing hospice care is the health care system itself — people are initiating hospice services too late.
“Under managed care, people don’t have the relationships with their physicians that they used to have,” she said.
As a result, physicians are much more cautious about making a six-month prognosis.
Instead of hospice being a program that people utilize in the last six months of a patient’s life, the median length of care by Wulfkuhle’s staff is two weeks or less.
Additionally, medical breakthroughs have meant more and more people are pursuing treatment options until the very end.
“People think of hospice as something you utilize in their final days,” she said. “It’s hard to deliver in a situation like that. At that point, many times they are in crisis.”
Transitioning to hospice care can help provide a smooth transition for both the patient and the patient’s loved ones.
“Then, they have a chance to get to know their social worker or volunteer,” Wulfkuhle said. “And the family, at that point, isn’t so exhausted.”
Wulfkuhle said that her organization’s employee turnover is low, and that the shortage she feels the most is among certified nurses’ assistants.
“That is of particular concern. Because of the short length of stay, people need more care,” she said. “We have become more flexible in scheduling hours of work and we’re revising our salary structure.”
The organization has an annual operating budget of $8.5 million, a combination of Medicare reimbursements and donor support.
Hospice became a covered benefit under the Medicare program in 1983. In 1997, Medicare spent approximately $2 billion of its roughly $200 billion budget on hospice services provided to 383,000 patients who received more than 19 million days of hospice care.
In addition to his duties as a board member, Sawyer said he was inspired by the dedication of the nurses he’s observed to become a hospice volunteer last fall.
“They believe in what they’re doing,” he said. “That’s what made me want to be a volunteer — I wanted to get out and help them do their job.”
