Hospice industry takes first steps to quantify its outcomes of care

The process can be complex, but the need is urgent

In September, an invitational meeting of end-of-life experts was held in Woods Hole, MA, with the goal of laying down the research agenda for the measurement of outcomes of care for patients with life-limiting illnesses. A similar gathering last year reviewed existing outcomes measures in order to cobble together a Toolkit of Instruments to Measure End-of-life Care (TIME). This toolkit, much of which is available on the World Wide Web, compiles measurement tools and research data in a number of areas ranging from advance planning and continuity of care to spirituality and bereavement.

The September meeting was called to go the next step and establish a plan for filling in the blanks; for assembling a consensus among providers on outcomes, standards, and practice guidelines in end-of-life care; and for disseminating the results. Along with the statisticians, academicians, and leaders of national end-of-life groups were a few representatives from hospice. However, if this end-of-life toolkit project succeeds in its stated goals, many more hospice administrators may end up wishing they had been there to offer their input.

Spearheading the initiative is Joan Teno, MD, MS, until recently co-director of the Center to Improve Care of the Dying at George Washington University in Washington, DC, and now associate professor of community health at Brown University in Providence, RI. Co-sponsors are Marilyn Field, deputy director of health services for the Washington, DC-based Institute of Medicine, and Ira Byock, MD, a hospice physician in Missoula, MT, and program director for the Princeton, NJ-based Robert Wood Johnson Foundation’s new $12-million initiative Promoting Excellence in End-of-Life Care.

Hospices today face the same challenge as other health care providers — how to quantify, measure, demonstrate, and compare the quality and results of their interventions. Some issues are unique to hospice outcomes, given that mortality rates approach 100%, and most patients are getting steadily sicker and losing functional abilities. Hospices also need to establish credibility and demonstrate the value of their care relative to the current wave of new national programs trying to redefine care of the dying.

One thing on which the experts agree — standardized outcomes are coming for hospice, whether these are grown from within the industry and sensitive to the nuances of good hospice care or imposed from without by payers, regulators, accreditation surveyors, or others who may not understand the realities and the possibilities of care at the end of life.

Or they may emerge from the new end-of-life movement and from initiatives such as TIME, which is trying to develop valid, clinically meaningful and manageable measures of quality that would apply to all settings for end-of-life care, including hospice.

"Out of this conference, I hope a set of research priorities will emerge," Teno says. "There are important unanswered questions about measuring quality of life for the dying patient. I will also be creating a Web page to post the results of the conference and allow direct e-mail comments. We need to make it as easy as possible for health institutions to look at their own quality of end-of-life care, and to use and chop from our toolkit as needed," she says. "I also want to be sure we’re reaching out to managers of health care systems and managers of hospices. They are the end users of outcomes tools, and they have a stake in making sure they play an active role in this process."

"I think this [toolkit meeting] should be the spur that gets hospice people off their chairs, doing everything they can to actually start collecting outcomes data," says Bernice Wilson, RN, MS, executive director of the Ohio Hospice Organization (OHO) in Columbus, which has launched its own outcomes project. "Right now the end-of-life people are still just talking about it; they’re not actually collecting data." If hospice is not part of the outcomes solution, Wilson explains, "somebody else who does not have our values will be telling us what we need to be measuring."

What are current hospice outcomes efforts?

One of the leading efforts to measure the value of hospice care is the Missoula-Vitas Quality of Life Index, a 16-item questionnaire developed by Byock and Melanie Merriman, MBA, PhD, director of quality and compliance services for the Miami-based Vitas Healthcare Corp. hospice chain. This tool is designed to identify what is most important to hospice patients as they become weaker and to quantify their self-assessed quality of life in five major domains:

• symptoms of illness;

• functional status;

• interpersonal relationships;

• emotional well-being;

• the transcendent or transpersonal realm.

A validation study of the index has been completed and submitted for publication and is now being used in a dozen hospices outside of Vitas, Merriman says. "We’ve received 200 requests for copies of the tool, and we remain interested in disseminating it and having a lot of people use it and make it the industry standard."

One problem that has emerged with the tool, which is administered upon hospice admission and at 20 days, is that many hospice patients don’t live long enough for the second assessment. But the tool still has relevance for hospices by providing a formalized picture of the patient’s status and of the quality-of-life issues that are most important to the patient, she says.

The National Hospice Organization (NHO) in Arlington, VA, has also pushed outcomes measures through its research committee and is now refining two tools that can be used throughout the industry to assess pain management and family survivors’ satisfaction with hospice care. NHO recently surveyed state hospice associations about their activities in this area. Of 24 responses, four states — Kentucky, Minnesota, Ohio, and Vermont — reported they are now collecting outcomes data, while five others — California, Michigan, New Mexico, Oklahoma, and Wisconsin — are planning to implement outcomes projects.

"We’re trying to promote outcomes measurement at the state level because it’s hard to impose it nationally from the top down," says NHO research committee chairman Stephen Connor, PhD, president of Hospice of Central Kentucky in Elizabethtown. "Each state should include any measures they and their providers want to include. We want people to be creative, and, hopefully, out of that will emerge best practices. But we also have to be disciplined in deciding on the outcomes we can all agree are important to measure," Connor says.

Two-year endeavor for OHO

OHO has spent two years sifting through measurement issues, gathering consensus, educating providers, and running an outcomes data collection pilot. The organization expected to have 60 Ohio hospice providers on board, trained to collect uniform data on all hospice admissions in the areas of pain and quality of life by Oct. 1, Wilson says. "We’re accomplishing our goals, looking at next steps, and thinking of going after funding" for an objective third-party organization to compile the data.

The Kentucky and Wisconsin hospice associations have both developed grids mapping out problem areas in hospice care deserving study, with corresponding measures for desired outcomes. Kentucky’s Benchmarking Project Outcomes Grid identifies 12 common problems for terminally ill patients, such as limited access to hospice care and patients dying in the hospital setting when they wish to die at home, as well as desired outcomes, measures, and data collection methods to address these problems.

Wisconsin’s Expected Care Needs Outcomes and Performance Measures for Hospice similarly identifies gaps, desired outcomes, measures, and methodologies. These grids point the way toward defining and measuring comparable results between hospices.

"We started working on outcomes, driven by the state Department of Family Services’ long-term care redesign initiative," explains Hospice Organization of Wisconsin executive director Patricia Gottfried. "They challenged us to provide the data to show we provide quality care — data we didn’t have. We now have a working draft of the grid, showing how we can measure outcomes with existing tools, and possibly new ones."

This draft document is still being refined, but Gottfried hopes actual outcomes measurement by hospices could start next year. "My goal is that this becomes a national coordinated effort to link up the best of stuff being done out there. If we could do this nationally, that would be great, but we need the statewide data, period," she says.

The New Hampshire Hospice Organization is working with the Dartmouth Medical School’s Center for the Evaluative Clinical Sciences in Hanover, NH, on an ambitious, multifaceted end-of-life quality improvement project. This project includes focus group interviews with the families of terminally ill patients, consortiums of providers, and community leaders committed to improving end-of-life care and development of outcomes measures in five areas:

• clinical outcomes;

• physical function;

• satisfaction of patient need;

• cost;

• system issues.

Implementation has been slower than expected, says principal investigator Sarah Goodlin, MD, associate chief of staff at the Veterans Administration hospital in White River Junction, VT. But a three-page comprehensive assessment tool has been pilot-tested with six hospices. This fall the project will go statewide in both hospices and home health agency bridge programs.

"We can’t address all of those five outcomes domains comprehensively," Goodlin says. Nor will the project be tracking patients chronologically. Instead it aims to get a snapshot of what happens in hospice by assessing all enrolled patients at a certain point in time. "We struggled with the timing issues, and we still haven’t sorted out the dilemma of progression of disease vs. benefit of service," in shaping the snapshot of reported care outcomes at the time the survey is conducted. "But we’re looking for broad trends and recognizing the variation; I still think it will be helpful," she says.

[Editor’s note: For information about the Missoula-Vitas Quality of Life Index, contact: Melanie Merriman, Vitas Healthcare Corp., (305) 374-4141.]