Bold NHO report points the way to the future role of end-of-life care

Eliminating Medicare's six-month requirement is first step

An eagerly awaited, wide-ranging, and ambitious report by a committee of the National Hospice Organization (NHO) is chock-full of recommendations that could transform the hospice industry and position it for a much larger role in end-of-life care - if they could be put into effect.

Enacting the proposals of the NHO's Committee on the Medicare Hospice Benefit and End of Life Care would require action by Congress, the Health Care Financing Administration (HCFA), payers, medical schools, and hospices themselves. The report found hospices to be as big a contributor to access barriers as the external environment in which they operate.

Hospice Management Advisor has obtained from the NHO a prepublication copy of the committee's report, which was approved by the NHO's board of directors in late April and set for release to the organization's members in presentations at the NHO's management meeting in St. Louis, in early June. In addition to its recommendations, the report lists the characteristics of the ideal future hospice, and identifies 16 external and 16 internal barriers standing in the way of hospice realizing its full potential in end-of-life care. It asserts that hospice needs to take the lead in end-of-life care because hospice care works, even though not enough dying patients take advantage of it.

Hospice executives contacted by HMA greet the committee's report as a bold and momentous step for the organization, which has been closely associated with the fortunes of the Medicare hospice benefit for most of its history. "It's huge. I think it's wonderful, if we don't go down the tubes before it can happen," says Christy Whitney, RN, MS, president and executive director of Hospice of the Grand Valley, in Grand Junction, CO.

"How fast can we do this?" wonders Gretchen Brown, MSW, president and CEO of Hospice of the Bluegrass, in Lexington, KY. "We're in desperate need of help, but change is going to be slow."

`Six months or less' is the biggest problem

The most dramatic proposal in the report is to fix the problems imposed by hospice's requirement of a prognosis of six months or less to live as a condition of enrollment. The report calls this the single most important barrier to expanding hospice access to more dying patients. Although "six months or less" has been a cornerstone concept of the hospice industry in this country, plummeting lengths of stay (see HMA, January 1998, pp. 1-7) and fallout from Operation Restore Trust investigations testify to the increasing difficulty in getting patients over this hurdle.

Recent research, including SUPPORT (the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment), demonstrates the lack of scientific basis for determining six-month prognoses, while physicians are reluctant to make such predictions and patients and families resist their finality. Controversy over recent efforts to implement local medical review policies for non-cancer admissions (see HMA, June 1998, pp. 79-80) only underscore the problematic nature of terminal prognosticating.

Eliminating the six-month requirement could be done by legislation or through research initiatives to test alternate eligibility criteria such as comprehensive palliative care evaluations or disease-specific case management models, the committee suggests. Other key recommendations in the Medicare committee's report:

· speed the development of outcomes measurement tools for assessing the quality of hospice and end-of-life care;

· permit hospices to do palliative care consultations and to provide services to non-hospice patients;

· assess and revise Medicare reimbursement to address costly new medical treatments, high-cost short-stay patients, higher relative costs in rural areas, and the need for residential room and board;

· create tax or other incentives to encourage family members to agree to serve as primary caregivers;

· launch a public engagement campaign to increase understanding and demand for hospice care;

· develop end-of-life core curricula for health professionals and create hospice rotations in graduate medical education;

· champion integrity in hospice and establish a voluntary compliance program for the industry;

· explore the creation of a hospice-specific accreditation program by the NHO;

· establish a Hospice Leaders Institute to improve the skills of hospice managers.

The report also exhorts providers to implement more flexible protocols that better meet the needs of individual patients and families. Hospices shouldn't exclude patients who live alone or are receiving expensive palliative drugs and other treatments. Nor should they impose rigid attitudinal definitions on dying patients. The NHO, the Hospice Association of America, and other national groups should also undertake activities to address the current impact of overly aggressive regulatory scrutiny by HCFA and the Office of Inspector General, and should be prepared to take swift and decisive action in the face of future inappropriate activity by the government, the report declares.

Unanimous recommendations

"The committee unanimously endorsed the report and its recommendations, and the board adopted them and made a firm commitment to implementing them," relates Amber B. Jones, president and CEO of the New York State Hospice Association, and chairwoman of the Medicare committee. "We've asked for a lot of things, but the hard work is still to come. If there is one message that I would emphasize, it is that while we want NHO to do certain things, we also think individual hospices can do a lot," she explains.

"If hospice wants to be the provider of choice in end-of-life care, we need to extend the work of hospice and expand our horizons to meet those needs. 'Six months' is very momentous, a big change and a big challenge. The position of the committee is meant to signal that it's time for a big change," says Jones, who hopes the report will energize a provider community that is now feeling beleaguered.

"I think these changes can be made. It will take a lot of work, but [incoming NHO president] Karen Davies is up to the task," says J. Donald Schumacher, PsyD, president and CEO of the Center for Hospice and Palliative Care, in Cheektowaga, NY. Adds Stephen Connor, PhD, co-administrator of the Alliance of Community Hospices, Elizabethtown, KY, "The easiest way to effect change in end-of-life care is to change hospice - not create another alternative."

On the other hand, says Joanne Lynn, MD, director of the Center to Improve Care of the Dying at George Washington University, in Washington, DC, "Any substantial revisions in the Medicare benefit will almost certainly open the question of whether the rates are right. If you win on expanding hospice beyond six months, but don't change the daily rate, that probably won't be viable."

Looking forward

"This document is a look backward and a look forward," Davies tells HMA. "We're looking at how to innovate based on hospice's years of experience." The report is aimed at advancing hospice into the next century. "This is part of the visioning process any organization goes through as part of its maturation." Davies says that the NHO will be developing a national call to action and working with other national organizations interested in collaborating on these issues.

"To me it's a natural flow, more of an evolution than a revolution," adds David A. Simpson, MA, LSW, NHO chairman and executive director of Hospice of the Western Reserve in Cleveland. "Hospice people are encouraged, not just by the report, but by seeing NHO fighting on their behalf. But we need to try new models and take risks, and we need to be willing to grow."

"Our first collective responsibility is to have an open mind to this report. Then we need to look to examine each and every one of the barriers," Davies says. "NHO and I know it can't be business as usual. We have a mandate to raise awareness of end-of-life care. Hospice should truly be the gold standard of care for the terminally ill. We know we have an obligation to provide information and resources" to help members live up to this aspiration, she explains. "NHO has to work to remove barriers to care, design new and better products, pursue with vigor outcomes-based research, and form new national partnerships."

"The Medicare hospice benefit has only one structural flaw: We require physicians to make a judgment about prognosis that they can't do very well. I'd say we should concentrate our efforts on that one structural flaw," says Carolyn J. Cassin, former CEO of Hospice of Michigan, and new chief operating officer, East, for Vista Hospice Care.

Cassin, who was a member of the NHO Medicare committee, urges hospices to "use the hospice benefit as it was intended. Let's stop the restrictive use of the hospice benefit. The bold thing that the NHO's Medicare committee did was to say to providers, `Let's step up to the plate. . . . We need to teach hospices how to use the benefit legally as flexibly as possible,'" she explains. "The hospice that says, `Is this patient ready for hospice?' does us all a disservice. . . . Let's not create our own barriers."

With all the discussions of new models of end-of-life care, "let's not forget about the patients who have six months or less to live, but are tough to get at," she adds. "We need to figure out why patients who have a prognosis of six months or less aren't ready for hospice, and find a way to get them into hospice."