Foundation draws groups to improve care for dying
New end-of-life campaign gives only nod to hospice
A new broadly based coalition representing 72 organizations interested in improving health care for the dying and chaired by former first lady Rosalynn Carter has again spurred the concerns of some hospice leaders that they are being sidelined by medical establishments in dealing with end-of-life issues.
Funded with a $1.7 million grant from the Robert Wood Johnson Foundation of Princeton, NJ, Last Acts: Care and Caring at the End of Life was announced in February in Washington, DC. The coalition represents medical nursing, bioethics, philanthropic, consumer, and disease advocacy groups. It uses an extensive committee and task force structure to spark improvements in such areas as medical education, financing and reimbursement models for end-of-life care, and awareness of terminal care issues by employers, consumers, and the general public. Its primary goals are to improve communication and decision making around end-of-life care, change how health care institutions treat dying patients, and influence broader cultural attitudes toward death.
The Last Acts coalition is an explicit response to shortcomings in conventional end-of-life care, documented by the Study to Understand Programs and Preferences for Outcomes and Risks of Treatment1 (SUPPORT), which was also funded by the Johnson Foundation. The new campaign began with an invitation-only conference in Arlington, VA, in March 1996 to start gathering ideas on solutions. Having made progress over the past year on coalition building and task force structure, the group decided it was time to unveil the project for the public. "With all that is going on in this area, we are seizing the moment," explains Steven A. Schroeder, MD, the foundation’s president. "Last Acts will be more than platitudes about a good death."
End-of-life care experts, including those from hospice, laud Rosalynn Carter’s involvement in the campaign. Carter is the author of Helping Yourself Help Others: A Book for Caregivers and chairwoman of the Rosalynn Carter Institute at Georgia Southwestern State University in Americus, which conducts research and advocacy on caregiving. She has been interested in the subject since helping to care for her sick father when she was 12 years old.
"People’s greatest fears revolve around how they will live with illness until they die," Carter said at the Last Acts press conference. "We need this coalition so that fewer people will die alone, in pain, and attached to machines, with the result that more people and their loved ones can experience dying for what it ought to be the last act in the journey of life."
Such a philosophy would seem to be a perfect fit with hospice care, and Carter and the Foundation’s press materials both made passing reference to hospice. In fact, the coalition includes the National Hospice Organization (NHO), American Hospice Foundation, Hospice Nurses’ Association, and several individual hospice programs.
"Hospices have been working for many years to improve care of the dying. Well, now there are others involved," observes Rosemary Gibson, senior program officer with the foundation. "There’s no question that the principles of hospice care and the hospice model have an enormous amount to offer. No question, we need to look to the hospice movement and learn from you."
However, recognition of hospice as a model of care is not the same as pledging overt assistance to today’s hospice providers, who are struggling against institutional barriers such as plummeting lengths of stay, financially based impediments to referrals, and controversial federal audits of longer-stay hospice patients. Gibson acknowledges that such concrete support is not on the Last Acts agenda.
"I think the foundation is doing a lot to keep the issue of end-of-life care before the people. They certainly put their money where their mouths are," says NHO President John J. Mahoney, who attended the invitation-only conference last March. "I also think we’re getting a serious hearing. It’s important that hospice representatives are at the table" for initiatives such as Last Acts. He adds that hospice was not adequately considered when the Last Acts campaign was first organized, "so they went back and reevaluated it."
Mahoney does not believe hospice should take an adversarial stance toward the larger system’s end-of-life initiatives. "But we need to be firm and to consistently remind people about hospice and articulate our position," he says. "We have a lot of opportunity now, and we’re being taken seriously by those groups that have influence. But at the same time, I’m very cautious. We are challenged to continue to be heard. It is very easy for the people involved in these efforts to reach the uninformed conclusion that hospice is somehow irrelevant to their efforts and to move forward on that basis."
Ira Byock, MD, hospice physician from Missoula, MT, and president of the American Academy of Hospice and Palliative Medicine in Gainesville, FL, says he also wonders what hospice’s role will be in the rapidly evolving field of end-of-life care. "I’m not even sure what hospice means anymore. We have to be honest; the quality of hospice care is not rising it’s falling. Some hospices out there are licensed and certified, yet are not what we would recognize as hospice care," he adds, alluding to the mission-driven values of hospice that sometimes may get lost in the evolution toward corporate hospice care. "What’s more important is to determine what is truly comprehensive end-of-life care that reflects the precepts and best practices of hospice, and bring those standards into all settings for end-of-life care. . . . Hospice has not been as effective as it could have been in promulgating or clearly delineating those standards," Byock says.
"What I hope comes out of Last Acts is a clearer definition of what standards of end-of-life care should be and then holding our health and social systems accountable to meet those standards. If we simply try to protect or expand our own programs, we’ve missed the mark. The mark is the best quality of life for persons with life-limiting illness and their families. Hospice will continue to be an important part of the solution for that," he adds.
One of the primary speakers at the February Last Acts press conference, Kathleen Foley, MD, director of the Project on Death in America in New York City, suggests that hospice providers worried about being swept aside in the new national end-of-life initiatives may not be asking the right questions. "No one wants to assist in the death of hospice. I haven’t heard anybody say we’ve got to cut back on hospice. I view efforts like [Last Acts] as a gift from heaven, dropped into hospice’s lap," Foley says. "But the ball’s in their court. [Hospices] have so much power they don’t know how much." The hospice community will need to speak up with a determined and unified voice if it is to take advantage of the opportunity created by growing attention to end-of-life issues, Foley says.
We can do it if you give us more money’
NHO and the hospice movement’s leadership should develop a more advocacy-oriented media response, as well as take a higher profile on the physician-assisted suicide debate, Foley suggests. "They have to be more vocal and say, We can do it, if you give us more money,’" rather than just stepping around the issues. If hospices are experiencing problems, Foley says, they need to get those problems onto the national agenda. "If they want patients to be referred sooner, say so. Ask why are they serving only 350,000 hospice patients a year. If they need more money for expansion of services, say so. Demand a Medicaid waiver. I was just in Indiana, and Indiana doesn’t even cover hospice under Medicaid," Foley says. "What are the barriers? Define them. What do hospice leaders want done?"
As an example, the recent audits of hospice admission practices by the Office of Inspector General "should have been an occasion for a hospice-sponsored press conference, taking the government to task for picking on a highly respected program serving the elderly." (See Hospice Management Advisor, March 1997, pp. 25-28.)
Byock, author of the recently published Dying Well: The Prospect for Growth at the End of Life, is busy setting up the national program office for another, as-yet-unnamed Robert Wood Johnson Foundation initiative aimed at improving end-of-life care. This $12 million project will fund "innovative projects of national significance . . . that seek to provide or extend comprehensive end-of-life care in a variety of systems and care settings and to as broad a population as possible," he explains.
Byock will be its national director, out of an office in the Practical Ethics Center at the University of Montana in Missoula. The new project, its official name, contact information, and application procedures are expected to be formally announced in April. In the meantime, hospices can get updates on the Foundation’s end-of-life initiatives via the Internet at: http://www.lastacts.org.
Resource
1. A controlled trial to improve care for seriously ill hospitalized patients. JAMA 1995; 274:1,591-1,597.
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