Researchers advance the art of end-of-life outcomes
But are providers keeping pace with outcomes measurement?
By the end of this year, the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) will require accredited home care providers - including hospices - to begin measuring outcomes of their services by using a measurement system approved under its ORYX outcomes initiative. Few ORYX-approved measurement systems are specific to the needs and issues of dying hospice patients, but JCAHO has indicated that it is the industry's responsibility to rectify this absence.
The federal Health Care Financing Administration (HCFA) also has indicated it will eventually require Medicare-certified hospices to measure outcomes, as it now plans to do for home health agencies, although this requirement will be farther down the road. The consumer-oriented Foundation for Accountability (FAcct), based in Portland, OR, recently announced that it is developing a framework for gathering clear and concise information on provider performance in end-of-life care. FAcct plans to draw on the work of Joanne Lynn, MD, director of the Center to Improve Care of the Dying in Washington, DC, and Joan M. Teno, MD, associate professor of community health at Brown University in Providence, RI.
If hospices needed an additional sign that outcomes measurement will be essential to their future survival, they could look to the Robert Wood Johnson Foundation's new $12 million initiative, Promoting Excellence in End of Life Care. This new grant-making program, directed by Missoula, MT-based hospice physician Ira Byock, MD, received 677 letters of intent for innovative end-of-life care proposals last fall and invited just 56 of these proposed projects to submit full applications for funding.
Although Byock's program does not mandate which outcomes need to be measured by funded projects, it does require grantees "to be measuring the impact of whatever project they're proposing and [giving] tangible evidence that one can measure what they want to measure," he says. Applicants are urged to choose measurement tools that best meet the needs of their proposed project and reflect current outcomes science. The program also is steering them to the 10 domains pertinent for measuring quality of care for patients at the end of life, compiled by Lynn for the American Geriatrics Society and endorsed by numerous national health care groups.1
Hospices must become `evidence-driven'
Byock adds that every hospice should be measuring outcomes if it hopes to compete in the emerging field of end-of-life care. "We all have to act on a commitment to be evidence-driven," he says. "Those who prefer to measure nothing, we will soon be sending them bereavement cards" on the demise of their agencies. "Those who will survive will see quality measurement as an integral part of how to do business."
The commitment to being evidence-based starts with high-level management, who must make adequate resources available. "That way, measurement of meaningful outcomes becomes part of the organizational culture - how we do business, how we bring data to our talks with managed care plans, and how we pursue quality improvement," Byock says.
"I think that's now happening, but in a large sense it's only beginning to happen. We are now in a better position to do outcomes measurement. There are better tools for it [see related article on p. 44], and we are becoming more sophisticated. But in general it's a work still in progress," Byock says.
"There are a lot of challenges. Information systems need upgrading. It's hard to invest in measurement when providers feel under so much stress. But it does need to be done if we are to compete," he adds. "As I travel and meet people, I'm seeing more evidence that at least the more progressive programs are doing what they need to be doing in this area."
How can providers join outcomes revolution?
Byock also recommends basing internal measurement and quality improvement efforts on the National Hospice Organization (NHO) Standards and Accreditation Committee's "A Pathway for Patients and Families Facing Terminal Illness." Melanie Merriman, PhD, director of outcomes management and research for the Miami, FL-based Vitas Healthcare Corporation, adds that the 10-item family satisfaction survey developed and disseminated by the NHO is a tool that "every hospice can use. Plus it now has benchmarking data, to use in comparing your hospice to industry norms."
Teno, who is coordinating an outcomes clearinghouse project called the Toolkit of Instruments to Measure End-of-Life Care, urges providers to start small, but be consistent. (See Toolkit article inserted in this issue.) "Take a look at how well you are doing, say, with pain, using a numerical scale to assess its severity. Then merge that measurement with some process questions. Ask patients: Were there times when you had to wait too long for your medications? Do a simple 10- to 15-item questionnaire with a small number of patients and see what you find," she says. The best way to get started is with a project that's manageable, but be prepared to uncover surprises.
On the other hand, Ohio Hospice Organization (OHO) executive director Bernice Wilson, RN, MS, is impatient for the industry to move beyond individualized experimentation toward some kind of consensus on what needs to be measured. "The No. 1 issue I see in this area is that hospices are still operating in isolation when it comes to quality issues. They have a long-standing history of doing their own thing. We have to realize that there's a huge amount of work we need to do collectively. Outside of a few small groups, that work hasn't been done."
OHO has been pursuing a statewide outcomes measurement project for several years (see related story at right), and Wilson has found herself fielding phone calls from other hospices asking for OHO's outcomes form. "Everybody out there seems to think this just involves swapping a form," but measuring outcomes that will be acceptable to payers and regulators is much more demanding, she warns.
"The issue is not what form you use, or even precisely what you measure, but that as an industry, we're all doing the same thing, using the same rules. For outcomes measurement, it doesn't have to be rocket science. But just measuring one or two things consistently, and in a broad arena, is phenomenally difficult."
Wilson says she hopes other state hospice organizations step forward and begin to work these issues out. "I believe even the rest of the states would be happy to let Ohio do it, and then adopt the results. But that doesn't address consensus-building," she says. "I suspect that will start to change when the Joint Commission starts requiring outcomes," or when HCFA makes it mandatory, she adds.
By Dec. 31, 1998, JCAHO-accredited home care organizations will need to select a JCAHO-listed performance measurement system and at least two clinical or patient perception-of-care measures, and report this information to JCAHO. Initial performance data for these measures must be submitted by March 31, 2000.
Although hospice-specific measures are not yet on the ORYX-accepted list, Wilson says she hopes the work being done by OHO, Vitas, or others might satisfy JCAHO's requirements. "When I talk to the Joint Commission, they say: `Get a measure and put it through our hoops and we'll adopt it.'"
OHO's outcomes project is now compiling data from 45 providers on a few basic outcomes. If the data can be validated, that should help to make hospice's case with regulators, legislators, payers, and the public, Wilson says. "What we're seeing, although they are not yet statistically significant, are exciting hints that hospice really does make a difference in all those areas we thought we accomplished. . . . What would be tremendously exciting is to then compare these outcomes with other end-of-life providers and settings."
Reference
1. Lynn J. Measuring quality of care at the end of life: A statement of principles. J Am Geriatr Soc 1997; 45(4): 526-527.
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