In January 1995, a physician diagnosed 50-year-old Cliff Dailey of Atlanta with a rare form of cancer. His doctor offered massive doses of chemotherapy as his only hope. Dailey’s severe heart problems, though, lowered his already meager chances of survival to less than 10 percent.
“We knew going into this that there wasn’t a great deal that medicine could do,” says his widow, Rita. “But it was the only thing we had.”
Finally, Dailey’s doctor determined that continued chemotherapy would lead to a quicker death, and he recommended two different hospice programs.
Rita Dailey recalls that a representative of one of the hospices met her at the door. “She said, ‘We’ll help you all we can, and when he’s dead, you call us. We’ll pick him up.’ “
In America’s death-denying culture, hospice is struggling to overcome the perception that it is a choice to quit. On the contrary, its advocates assert, hospice is an interdisciplinary program that enables the terminally ill to live to their fullest with the time they have left.
Though the number of hospice programs has grown steadily—17 percent annually during the past five years—Yale University Medical School professor Diane Komp believes that a bottom-line mentality, fostered largely by managed care and Medicare, has “hijacked” the original hospice vision of the movement’s Christian founder, Cicely Saunders. Saunders, a London physician, placed the spiritual dimension at the core of an integrated community team of lay volunteers and health-care professionals at Saint Christopher’s hospice (CT, Dec. 17, 1990, p. 22).
“The idea that you can fund something by the government and duplicate what happened in London totally underestimates what Saint Christopher’s hospice was all about,” says Komp.
“The community came together to solve a problem in health care that the health profession, left to our own devices, wasn’t doing a good job with,” says Komp, who serves at the Connecticut Hospice, Inc. in Branford, established in 1974 with the help of Saunders as the first hospice in the United States. “Communities of laypeople, doctors, nurses, clergy—even funeral directors in the large communities—came together with a common vision of doing a better job.”
The more than 3,000 hospice programs in the United States serve 450,000 patients, according to the most recent statistics of the National Hospice Organization (NHO), an advocacy and membership group based in Washington, D.C.
Hospice researcher Joanne Lynn says no conclusive research exists to determine just how well hospice is doing its job and what effect managed care arrangements have had.
“The NHO puts out a survey in which they measure satisfaction in families, so you know that on the whole there is sort of a glow about things,” says Lynn, director of the Center to Improve Care of the Dying at George Washington University in Washington, D.C. “But you wouldn’t know if lots of people were getting bad or inadequate treatment, because you’re relying upon the self-report of the family.”
CONTAINING COSTS: Though hospice observers and caregivers believe that on the whole it provides the terminally ill with a welcome alternative to institutionalized medicine, they agree that managed care and Medicare have altered the movement.
The good news is that more people have access to hospice care. The bad news is that bottom-line-oriented management often minimizes spiritual care and other nonmedical aspects of hospice care.
Further, there are signs in Oregon that cost issues may push hospice care toward acceptance of its moral nemesis, physician-assisted suicide.
“I’m happy to say it hasn’t happened here,” says hospice founder Saunders, who at nearly 80 continues to work full-time as Saint Christopher’s chair. “I think the U.S.A. has a lot of restrictions because of your managed care.” Great Britain has much greater freedom, Saunders says, because much of the funding is voluntary.
Saint Christopher’s origins go to 1958, when Saunders worked at a London home for the dying. Her published research on 900 cancer patients challenged conventional medicine’s treatment of the terminally ill. In 1967, Saunders and a group of other London doctors and nurses opened the world’s first residential hospice.
COMPETITIVE BUSINESS: For Rita Dailey and her husband, Cliff, the abrupt response to her initial question caused them to seek out an openly Christian alternative. At Southwest Christian Hospice, established in 1983 on the Saint Christopher’s model, Dailey’s husband died what the Union City, Georgia, hospice workers called a “good death” in August 1995. “I still go out and talk with their counselor when I’ve got to have somebody to talk to,” Dailey says. “They always take time for me.”
About 28 percent of hospice programs are independent community-based organizations, according to University of Chicago researcher Nicholas Christakis. Southwest Christian, fully financed by churches and corporate donations, is unusual because it does not charge its patients.
Another 28 percent of hospices are divisions of hospitals, 19 percent are divisions of home health agencies, 6 percent divisions of hospice corporations, 1 percent divisions of nursing homes, and 18 percent are “other” or not identified.
“There’s more and more competition now in hospice care,” says Southwest Christian Hospice director Michael Sorrow. “Once Medicare and Medicaid came out with the benefit, every Tom, Dick, and Harry jumped into the hospice business to make money on it.” He believes that some of the newer hospice programs are not as concerned with overall quality.
Jack Gordon, president of the Hospice Foundation of America, says hospice programs are providing good care, but he notes, “The problem with HMOs and insurance companies is that they’re very much into a fee-for-service mode, and so they try to buy pieces of hospice care that they think are important. They would limit the nurse visits. They’re appalled at the notion of bereavement care—because after the patient’s dead, they don’t want to have to spend any money.”
About 68 percent of hospices are nonprofit, 4 percent are government organizations, 17 percent are for-profit, and 11 percent are “other” or unidentified.
“Hospice has become kind of the medical management of a person’s pain and symptoms,” says Janice Kampbell, hospice community liaison nurse for the Franciscan Health System in Tacoma, a member of Catholic Health Initiatives West. “Hospice programs and doctors and other therapists can easily slip into looking at just the medical aspects of an individual, which aren’t all of the aspects by any means.”
Researcher Lynn believes that Medicare has played a large part in the hijacking of hospice, though its impact is not completely negative. “It converts hospice to much more of a business,” Lynn says. “On the other hand, it made hospice available to a whole lot of people that were never going to get it on a volunteer basis.”
The number of Medicare-certified hospices has grown from 31 in 1984, when the benefit began, to 2,154. Eighty percent of hospices are Medicare-certified. In 1997, Medicare paid a per-day rate of $94 for home care and $419 for general inpatient care.
DYING AT HOME: More than 90 percent of hospice care hours are provided in patients’ homes.
Dana Pias, director of Hospice Managed Care of Shreveport, Louisiana, says that Medicare’s flat benefit actually gives her more freedom in her program.
“I don’t have to justify every piece of equipment, every piece of medication, every time a nurse goes out,” she says.
But Pias and many others in the industry acknowledge that spiritual care often has a lower priority with managed-care organizations and insurance providers.
“They say,” Gordon relates, ” ‘Well, we don’t need the social worker, and the clergy ought to do it for nothing’—whatever they can do to cut down the cost below the Medicare reimbursement rate so they can make [a profit on] the difference.”
In 1995, the Offices of the Inspector General and the Health Care Financing Administration issued the findings of Operation Restore Trust, which targeted abuse of the Medicare hospice benefit. It found that the flat daily rate, which is paid irrespective of the amount of services, created an incentive to provide fewer services.
ELEMENTS OF FAITH: For the Daileys, the spiritual dimension was essential to the care of Rita’s husband, who she says was not a professing Christian when he entered hospice care. “They offered him life beyond this life,” Dailey says. “It was led by God’s hand.”
During hospice care, Cliff Dailey met a man in his 80s whom he called “Mr. Christian.” The elderly believer asked Dailey to pray before his meal. For the first time in half a century, Dailey prayed.
Researcher Christakis estimates that about 5 to 10 percent of hospice patients are cared for by church-run hospices.
Lynn believes that the health-care system should recognize the spiritual significance of the end of life as much as it does life’s beginning. “In childbirth, you have to give the family a special room to bond with the infant,” Lynn says. “In the same way, we need to learn some kind of language that allows us to make something very special at the end of life.”
She says the challenge is striking a balance between professional commitment and moral commitment, and the will-ingness to serve the sick and financial inducements.
David Schneider, director of membership services for the NHO, says his organization views the spiritual dimension as of equal importance to the physical and psycho-social aspects of hospice care. “But it also is going to vary from patient to patient depending on their own level of spirituality,” he says.
Cost restrictions limit the spiritual dimension of care at many hospices, says Pias, who worked for two other programs before coming to Hospice Managed Care of Shreveport, which she notes is a free-standing, for-profit hospice not affiliated with an HMO.
“That’s a very strong part of our program,” she says, “but most hospices do not employ full-time chaplains. They look at that as an additional service, not a core service.”
Camille Dierksen-Gamble, the founder of the Shreveport hospice, started it after her husband died in a hospice that did not include a spiritual dimension.
“The regulations do not say that you have to employ a full-time chaplain,” Pias says. “All they say [is that] you have to meet the spiritual needs of the patient. That leaves it open to a huge interpretation.”
Many hospice workers across the country agree that spiritual care is lacking, says Fay Davis, director of the hospice program of Tri-Cities Chaplaincy in Kennewick, Washington.
“We have a lot more spiritual emphasis here than a lot of other hospices have,” Davis says. “When I go out to meetings, they’re just amazed at the amount of focus we have and what we have available on the spiritual side.”
Chaplains are not the only hospice workers who give spiritual care, and some patients find they relate better to nurses, dishwashers, or cooks than to trained clergy.
“Absolutely everyone here is involved in pastoral care,” says 15-year hospice worker Jane Quirk, a volunteer at Evergreen Hospice of Kirkland, Washington.
DIFFERENT BELIEF SYSTEMS: Though Southwest Christian may have been founded on the original hospice model, it takes a decidedly more evangelical stance on spiritual care than even Saint Christopher’s.
“I have seen how the Judeo-Christian ethic is transferable to other cultures, other religions, and to the agnostic and secular world,” Saunders says. “And I think that is right.”
Yet, Saunders handles spiritual care the same way many hospice chaplains and workers do in the United States, approaching people from their own religious perspective.
“I wouldn’t ever try to proselytize,” she says. “We are here not to make people think as we do, but to make them think as deeply as they can in their own way.”
However, Sorrow says that Southwest’s founders had evangelism in mind from the outset: “They felt that they could not charge the families from that vantage point, because it creates a unique opportunity for our people, our volunteers and our staff, to share the message of Christ—even with people who had never set foot in a church.”
Sorrow finds New Age thinking commonplace in the hospice movement.
“When they talk about spirituality they talk about it in a totally different light than we would,” he says. “They have to rely on a very broad brush to [discuss] the spiritual side.”
Many have become Christians through the ministry, Sorrow says. “We don’t browbeat people with the Bible when they walk in the door, but our mission statement focuses on the fact that it’s the love of Christ that provides the dignity and quality, even up to the end,” he says.
ASSISTED DEATH? Though hospice workers almost unanimously express a disdain for physician-assisted suicide, there are already indications that it may become an element of hospice care in Oregon, which in November became the first state to affirm physician-assisted suicide in a voter referendum (CT, Dec. 8, 1997, p. 64). A member of the Health Services Commission of the Oregon Health Plan, Amy Klare, says she expects assisted suicide to be covered by the plan as “comfort care.”
“Much to my dismay, I think that we will probably see most hospices allow assisted suicide on their premises,” says Gayle Atteberry, director of Oregon Right to Life, which led the opposition to the assisted-suicide measure.
Atteberry says that since the law passed, many hospices that spoke out against assisted suicide are now hesitant to express their position.
“They feel—and I think with a lot of validity—that even if a person thinks, Yes, at some point I might want assisted suicide, once they get into a hospice program they will have their needs met and then they would not want assisted suicide,” Atteberry says. “So this puts hospices in a touchy situation.”
Rita Marker, director of the Anti-Euthanasia Task Force in Steubenville, Ohio, fears that HMOs and insurance agencies may favor hospices that allow assisted suicide because it is more cost-effective.
“Obviously they’re not going to come out and say, ‘We have a policy now that we’re only going to contract with those agencies that provide assisted suicide, because it’s cheaper,’ ” Marker says. “But we’ve seen it happening with physicians who have lost what is euphemistically called ‘economic credentialing.’ ” When the patients are doing well, it costs the HMO more than the HMO wants to pay, so they will not contract with that particular physician to provide services any more, she says.
CONFLICT OF INTEREST? Marker points out that many backers of the assisted-suicide measure are associated with HMOs.
“My worry in this country is not the slippery slope of a dictator who would begin to do these things, but the sweet seduction of the marketplace,” says Southern Methodist University ethics professor William F. May, author of Testing the Medical Covenant: Active Euthanasia & Health Care Reform (Eerdmans, 1996). “It’s cheaper; get ’em out of here. And we spare ourselves expensive care.”
George Washinton University’s Lynn maintains that society must be taught to provide high quality end-of-life care. “Physician-assisted suicide cannot be debated and resolved except in the context of how we will choose to support one another at the end of life,” she says.
“After all of this time, [hospice] is not as integrated into the whole scheme of things as it might have been,” says Rosemary Johnson Hurzeler, director of the Connecticut Hospice, Inc. More grassroots involvement in hospice care is also a necessary ingredient for better integration with the health-care system.
Last September, Evergreen Hospice in Kirkland, Washington, launched its Faith in Action program to “raise awareness on end-of-life issues and help the faith community enhance their care-giving skills” through seminars and presentations in churches.
“First let’s take this subject out of the closet, then show people how to do it,” says Faith in Action director Karen Modell, who has become known around the community as the “death-friendly one.”
Volunteers at Evergreen must pass a rigorous training program. “If it’s not in the marrow of their soul, they don’t stay,” says Modell. “This is not easy work. Everyone at every level gets emotionally involved.” Integration also requires that Americans change the way they deal with death and dying.
“With the continued expansion of medical care and the ability to keep people alive, with no quality, it’s hard for some families to make determinations, particularly ones who have no faith,” says Fay Davis. “If they are out there with no faith, they’re going to stay in that medical model to the end.”
The irony is that while a minority of the terminally ill die under hospice care, most Americans when surveyed say that they want the kind of care that hospice was originally intended to provide. The Connecticut Hospice, which for seven years owned the word hospice, required any program that took that name to adhere to its ten principles of hospice care.
Those principles form the basis for a recent initiative of the Connecticut attorney general’s office called Physician Assisted Living (PAL)—a counterpoint to assisted suicide that gives patients and health-care providers the opportunity to establish their choice of the hospice option in advance.
“If you have to anticipate death, and you’re not ready to do that, then we’ve lost the opportunity, if you will, to help the people who really need it the most,” Hurzeler says.
As one of PAL’s originators, she hopes to see the initiative spread across the nation. “The ten principles are part of a whole value system that is couched in the sacredness of life,” she says.
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