New Orleans meetings focus on outcomes
Quick application is work group's aim
The need for valid, usable, and widely accepted outcomes measures for evaluating and comparing hospices and other end-of-life care providers was a major focus of discussions at the recent annual assembly of the American Academy of Hospice and Palliative Medicine, held June 24-27 in New Orleans. One session at the conference, presented by representatives from the Palliative Care Outcomes Collaborative project, described progress being made on the Toolkit of Instruments for Measuring End-of-life Care. (For more information on the Toolkit, see Hospice Management Advisor, April 1998, p. 44).
A separate meeting brought together quality improvement and research staff from members of the National Hospice Work Group, an informal collective of a dozen of the country's largest community-based, nonprofit hospices, along with representatives from the National Hospice Organization (NHO) in Arlington, VA's Pathways-Outcomes Task Force, the Health Care Financing Administration (HCFA) in Baltimore, and the Joint Commission on Accreditation of Health Care Organizations in Oakbrook Terrace, IL.
The purpose of this meeting, says True Ryndes, ANP, MPH, of San Diego Hospice and lead author of NHO's A Pathway for Patients and Families Facing Terminal Illness, was to "stop the wheel-spinning conversation about what's an outcome and actually roll up our sleeves and do [outcomes measurement]." The meeting also focused on relationship-building among the various constituencies for hospice outcomes measures.
"We achieved a narrowing down on measures, based on cross-referencing previous outcomes work, including NHO's pathway and the American Geriatrics Society's '10 Domains of Quality of End-of-life Care,'" Ryndes reports. This narrowed goal is still a huge undertaking, with far-reaching significance for the hospice industry, for the eventual imposition of outcomes requirements by HCFA, and for incorporating meaningful end-of-life measures into the Joint Commission's ORYX outcomes initiative, he says. Even consensus building is a big deal, since without consensus from major stakeholders, the effort won't get off the ground, Ryndes adds.
Chosen measures must also meet the test of actionability, or provide useful information for internal quality improvement purposes and make providers accountable for their results to external audiences, while imposing as few paperwork burdens as possible. Although actual measures have not yet been finalized, Ryndes says, the areas the Work Group plans to address include:
· Was the care setting responsive to the patient's pain over time?
· Were clinical interventions consistent with decisions expressed by the patient, as contained in the plan of care?
· Did the family experience education regarding medication administration, symptom states, and the dying process?
"By the end of the year, we will have put together crisply stated measures, built on the existing evidence base that we feel comfortable in recommending to the whole hospice industry," says Ryndes. The measures will be issued as recommendations by the Work Group for all hospices, with Work Group hospices taking the lead in actually implementing them.
At press time, another meeting for this ad-hoc outcomes group was planned in conjunction with the National Congress of the Institute for Healthcare Improvement's end-of-life collaborative in St. Louis in late July. Next steps include more conference calls, further exploration of the existing medical literature, and specific attention on how to measure bereavement outcomes. The group plans to present draft outcomes to the industry at NHO's annual meeting in Dallas in November, with further revisions based on input at that time.
Ryndes says the difference between his group's efforts and those of the Toolkit collaborative and other end-of-life outcomes initiatives is its focus on "getting providers to agree on walk-before-you run, actionable measures as a stepping stone" to larger-scale outcomes measurement. The Toolkit, on the other hand, has taken a comprehensive approach to compiling and categorizing information on measuring end-of-life care outcomes, with more focus on the research applications.
"Outcomes should be tied to standards of care," Ira Byock, MD, a hospice physician from Missoula, MT, observed in a presentation on the Toolkit at the Academy meeting. "If you only look at compliance with living wills and whether the patient received narcotic pain medications, then you have reflexively defined quality in end-of-life care in those terms. What do we call what we do that is beyond living wills and oral morphine? What do we call those things which are requisites of competent clinical medical practice, but not distinguishing features of palliative care?"
"We're now in this interesting transition to the next revolution of medicine. It's important that we examine and look at quality of care. We can't just say 'trust me' anymore," says Joan H. Teno, MD, MS, associate professor of community health at Brown University, in Providence, RI, who has been leading the Toolkit project and its transfer onto the Internet, notes. "We need tangible ways of measuring and examining what we do."
Two processes are now proceeding simultaneously for end-of-life outcomes research, Teno says. Those are rapid-cycle improvements in end-of-life care and enhancement of the conceptual map of what quality of care entails. "What we're doing is growing the knowledge base," she adds. "My fear is there's such a push for accountability, that we'll do something stupid in our rush to count. Let's first make sure the data we gather are really valuable."
At the same time, Byock says hospices must make sure best practice in hospice care provides the foundation for all end-of-life care standards and outcomes. "I believe we have to look to the best hospice programs to provide standards, and to start measuring processes and outcomes across the board," he says. "Then, when a new palliative care program starts up, we will have a standard of care against which to measure it."
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