Outcomes Forum
Report on the Alpha and Beta Pilots Of End Result Outcome Measures
Constructed by the Outcomes Forum
A joint effort of The National Hospice and Palliative Care Organization and The National Hospice Work Group
Click here to download reports from the Outcomes Forum
Introduction
Measures for evaluating the efficacy of end of life (EOL) care are different from measures for healthcare interventions where benefits of treatment are commonly expressed in terms of functional improvement, such as return to work or increased ability to communicate. End of life care addresses a phase of life rather than an isolated episode of illness or treatment. Consequently, end of life assessment processes frequently seek to quantify personal experience regardless of diagnosis. Of necessity, such measures are more subjective, but no less meaningful, than lab values. While on one hand we seek to identify appropriate and non-intrusive elements to quantify, we are also challenged to avoid having the concept of "dying well" be reduced to the sum of data points.
A joint effort of the National Hospice Work Group and the National Hospice and Palliative Care Organization, the Outcomes Forum has been largely based on: 1) the conceptual framework for outcome domains identified in a two-year consensus building process involving over 500 clinicians and managers in the hospice industry, 2) an extensive literature review and 3) the review of the medical records systems of 22 hospice programs. The domains described in Figure 1, are the cornerstones of the landmark NHPCO document: A Pathway for Patients and Families Facing Terminal Illness. Others have constructed similar conceptual models, against which the end-result outcomes have been cross-referenced. The Outcomes Forum, in particular, challenged itself to develop memorable language and hardy measures that would help establish quality expectations among consumers as well as relate to the interventions of health care professionals and needs of payers.
Given the highly dynamic, and widely variable, experiences associated with an anticipated death, and given the plethora of therapies and therapists that may have influenced the quality of a person's dying in advance of a hospice admission, the Task Force chose to focus on outcomes that can and should be influenced by hospice care, even for short stay patients.
The following individuals and hospice programs have made this effort possible through generous contributions of time and talent. Each contribution has been thoughtfully provided, warmly received and highly valued.
Outcome Forum Members
Carla Alexander, MD, University of Maryland Medical System, Baltimore, MD
Ina Boyd, Hospice of North Central Florida, Gainesville, FL
Susan Bruno, MSW Lifepath Hospice, Tampa, FL
Deborah Childs, RN, The Center for Hospice and Palliative Care, Cheektowaga, NY
Stephen Clauser, PhD, Health Care Financing Administration, Baltimore, MD
Chris Cody, RNC, MSN, National Hospice and Palliative Care Organization, Alexandria, VA
Stephen Connor, PhD, National Hospice and Palliative Care Organization, Alexandria, VA
Gail Cooney, MD, Hospice of Palm Beach County, West Palm Beach, FL
Jeanne Dennis, MSW, LCSW, Trinity Care Hospice, Torrance California
Kathy Egan, RN, MA, CHPN, The Institute for Hospice of the Florida Suncoast, Largo, FL
Perry Fine, MD, VistaCare, Scottsdale, AZ
Melinda Garverick, Ohio Hospice Organization, Columbus, OH
Barbara Head, RN, MSW Hospice of Louisville, KY
Marcia Lattanzi-Licht, MA, RN, LPC Boulder, CO
Judi Lund-Person, BA, MPH, Hospice for the Carolinas, Cary, NC
Dale Lupu, Ph.D., Daleview Associates, Silver Springs, MD
Susan Mann, RN, Hospice Incorporated, Wichita, KS
Melanie Merriman, PhD, Touchstone Consulting, Miami, FL
Naomi Naierman, American Hospice Foundation, Washington, DC
Betty Oldanie, RN, MS, Hospice of the Florida Suncoast, Largo, FL
Peggy Parks Ph.D., Health Care Financing Administration, Baltimore, MD
True Ryndes, ANP, MPH, National Hospice Work Group & San Diego Hospice, San Diego, CA
Shareefa Sabur, RN, Hospice of the Western Reserve, Cleveland, OH
Sherri Solomon, RN, Hospice of Michigan, Southfield, MI
Janet Snapp, RN, Hospice of the Bluegrass, Lexington, KY
Sharon Sprenger, Joint Commission on Accreditation of Health Care Organizations, Oakbrook Terrance, IL
Carol Spence, RN, MSN, Chevy Chase, MD
Joan Teno, MD Brown University Center for Gerontology and Health Care Research, Providence, RI
Patti Thielemann, RN, MS, CRNH Palliative Care Center of the North Shore, Evanston, IL
Alpha Pilot Sites
Hospice of Winston-Salem, Winston-Salem, NC
Hospice of North Central Florida, Gainesville, FL
Hospice of the Bluegrass, Lexington, KY
The Center for Hospice and Palliative Care, Cheektowaga, NY
Trinity Care Hospice, Torrance, CA
Hospice of North Central Ohio, Ashland, OH
Hospice of Chatham County, Pittsboro, NC
Valley Hospice, Steubenville, OH
Hospice of the Piedmont, High Point, NC
Beta Pilot Sites
Trinity Care Hospice, Torrance, CA
Hospice of the Florida Suncoast, Largo, FL
Hospice of Palm Beach County, West Palm Beach, FL
Hospice of the Western Reserve, Cleveland, OH
Hospice of Louisville, Louisville, KY
San Diego Hospice, San Diego, CA
Hospice of the Valley, San Jose, CA
Hospice of Winston-Salem, Winston-Salem, NC
The Center for Hospice and Palliative Care, Cheektowaga, NY
Hospice of the Bluegrass, Lexington, KY
Hospice Care Corporation, Kingwood, WV
A joint effort of The National Hospice and Palliative Care Organization and The National Hospice Work Group
True Ryndes, ANP, MPH
Stephen Connor, PhD
Chris Cody, RNC, MSN
Melanie Merriman, PhD
Susan Bruno, MSW
Perry Fine, MD
Jeanne Dennis, MSW, LCSW
Data Analysis Conducted by Institute for Clinical Outcomes Research
Susan Horn, PhD, Senior Scientist
Randall J. Smout, MS
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