Center for Hospice, Palliative Care, and End-of-Life Studies

Center for Hospice, Palliative Care, and End-of-Life Studies William E. Haley, Ph.D. Center Academic Director School of Aging Studies University of S...
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Center for Hospice, Palliative Care, and End-of-Life Studies

William E. Haley, Ph.D. Center Academic Director School of Aging Studies University of South Florida [email protected]

Goals for today „ Background

and history of the Center „ Organizational structure and staffing „ Mission statement „ Performance „ Strategic Plan „ 06-07 budget, goals, and objectives „ Challenges for our Center

Importance of improving end of life care „ Aging

of the population, and increased death due to chronic illness, make palliative and EOL care important „ Problems in palliative and EOL care „ Lack of high quality research on evidence based practice in end of life care

Development of the Center at USF „ „ „

„

Long history of USF faculty involvement at LifePath Hospice Development of informal interest group, 1996, meeting monthly through College of Nursing Involvement of key faculty from other units on the campus including Moffitt Cancer Center, School of Aging Studies Sustained interest by local hospices

Development of formal Type III Center „

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Funding primarily from donations from community hospice organizations—no ongoing USF funding Developed a proposal that was approved via university process, ultimately by VP Dougherty Implemented January 2001 Academic Directors have been Ron Schonwetter, MD, 2001-2004; William Haley, PhD, 2005-2006

Initial funding for the Center „

„ „ „ „

LifePath Hospice and Palliative Care, and Hospice of the Florida Suncoast “Founding Partners” ($100,000) Health Sciences Center ($70,000) Moffitt Cancer Center $57,000 Hope Hospice (Ft. Meyers), and Tidewell Hospice (Sarasota) $50,000 each Other hospices and organizations such as the VA are involved without providing funding

Mission of the Center „ “optimize

care and systems of care for patients and families faced with advanced non-curable diseases by generating new knowledge through interdisciplinary research, using that knowledge to educate health and human services professionals, and influencing public policy that supports quality end-of-life care”

Vision „ Become

nationally known as a center for excellence in research and education in palliative and hospice care and end of life studies.

Current structure „ „

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Co-directors (Academic and Community) Executive committee with representation from hospices and multiple academic units including Nursing, Medicine, Public Health, Moffitt Cancer Center, and Arts and Sciences (Aging Studies, Communication, Social Work) Reports to USF Health VP via Associate VP for Research, who also appoints Academic Director and Academic members of the Executive Committee

The USF Center for Hospice, Palliative Care & End-Of-Life Studies Health Sciences Center Vice President

The Hospice of the Florida Suncoast LifePath Hospice & Palliative Care, Inc.

Center Academic Director

Center Faculty

Center Coordinator

Center Admin Asst

Center Community Director Hope Hospice & Palliative Care H.Lee Moffitt Cancer Center and Research Institute

Executive Committee

USF Faculty

Students

Community Provider Members

Staffing „ Only

funded staff are:

– Academic Director (10%) – Center Coordinator (25%) – Center Administrative Assistant (20%) – All other effort is volunteered or funded from grants/contracts—No distinction between core and associate faculty – School of Aging Studies has contributed time from our web development staff

Importance for hospices „

„ „

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Universities have relevant expertise in areas including needs assessment, program evaluation, clinical trials, psychosocial research Partnerships may enhance ability to compete for grant funding Educational expertise of university faculty including inservice programs, and formal academic coursework Assistance in meeting personnel needs

Importance for universities „ „ „ „

Hospices can provide access to patients, families, staff, and volunteers for research Hospice staff are potential consumers of and contributors to education programs Hospices are excellent sites for volunteer work and internships Partnerships may enhance ability to compete for grant funding

Key context issues--opportunities „ „

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We have particular advantages at USF Some of the nation’s largest and most visionary hospice programs—LifePath Hospice and Hospice of the Florida Suncoast Several faculty members with national reputation in palliative care (McMillan, Haley, Schonwetter, Weitzner) History of campus-wide collaboration and interdisciplinary scholarship in this area NINR has identified Enhancing the end-of-life experience for patients and their families as a Research Theme for the Future.

Activities of the Center „ „ „ „ „ „

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Monthly meetings with research presentations and “networking” Pilot grants program – Up to $10,000 per project Graduate assistantship program – $15,000 per student Annual CE conference 16-hour medical student rotation in hospice—Every 3rd year medical student participates Graduate Certificate Program in Hospice, Palliative Care and End-of-Life Studies (Co-sponsored by College of Nursing and School of Aging Studies) Web page and listserve

Selected research funding facilitated by the Center -A Caregiver Intervention to Improve Hospice Outcomes Principal Investigator: Susan McMillan, PhD Collaborators: William Haley, PhD; Ronald Schonwetter, MD; Brent Small, PhD 1999-2003, $1,300,000 National Institute for Nursing Research, National Cancer Institute (RO1CA77307) -Caregivers of Cancer Pain Patients: Coping Intervention Principal Investigator: Susan McMillan, PhD Collaborators: Kristine Donovan, PhD; Brent Small, PhD 2002-2007, $1,800,000 National Institute for Nursing Research (R01-NR008270) -Home-Based Massage and Relaxation for Sickle Cell Pain Principal Investigator: Cynthia D. Myers, PhD 2003-2006, $250,000 National Center for Complementary and Alternative Medicine (R21AT01078)

Research funding (continued) -Massage Therapy for Children, Adolescents, and Young Adults at End of Life Principal Investigator: Cynthia D. Myers, PhD Collaborator: Sehwan Kim, PhD 2003-2006, $300,000 National Cancer Institute (R21-CA098408) -Use of Standardized Assessments to Improve Hospice Outcomes Principal Investigator: Susan McMillan, PhD Collaborators: William Haley, PhD; Ronald Schonwetter, MD; Brent Small, PhD 2004-2008, $1,700,000 National Institute for Nursing Research (R01-NR008252) -Psychosocial Impact of Stroke on Family Caregivers Principal Investigator: D. L. Roth (UAB) Collaborator: William Haley, PhD 2005-2010, $1,825,875 (subcontract $333,172) National Institute of Neurological Disorders and Stroke (R01-NS45789) -Support of the Family Caregiver of the Older Cancer Patient Principal Investigator: Lodovico Balducci, MD Collaborators: William Haley, PhD; Susan McMillan, PhD; Brent Small, PhD 2006-2008, $448,250 National Cancer Institute (R21-CA124606)

Representative publications McMillan, S.C. & Small, B. (2002). Symptom distress and quality of life in patients with cancer newly admitted to hospice homecare. Oncology Nursing Forum,29 (10), 1421-1428.. Chen H, Haley WE, Robinson B, Schonwetter RS. Decisions for hospice care in patients with advanced cancer. Journal of the American Geriatrics Society, 2003;51:789-797. Schulz, R., Mendelsohn, A. B., Haley, W. E., Mahoney, D., Allen, R. S., Zhang, S., Thompson, L., & Belle, S. H. (2003). End of life care and the effects of bereavement among family caregivers of persons with dementia. New England Journal of Medicine, 349, 1936-1942. McMillan, S.C. & Hagan, S. (2005). Training pain resource nurses: Changes in knowledge and attitudes. Oncology Nursing Forum, 32, 835-842. Salmon, J.R., Kwak, J., Acquaviva, K., Brandt, K., & Egan, K. (2005). Transformative aspects of caregiving at life’s end. Journal of Pain and Symptom Management, 22, 188-194. McMillan, S. C., Small, B. J., Weitzner, M., Schonwetter, R. S., Tittle, M., Moody, L., & Haley, W. E. (2006). Impact of coping skills intervention with family caregivers of hospice patients with cancer: A randomized clinical trial. Cancer, 106, 214-222.

Center budget „ Our

2006-2007 budget includes $61,396, of which $10,000 is for pilot grant funding, and $51,000 is for salaries „ The Center presently has a reserve of „ $190,555

Five year strategic plan „ „ „ „ „

Gain steady financial support from USF Health, e.g. 4 years @ $25,000 per year Pursue a state appropriation to fund the infrastructure of the Center Need for additional funded faculty researchers Pursue Development activities to support the Center Increase our national visibility via our Annual Conference and publications

2006-2007 Goals and Objectives „ Successful

Annual Conference „ Maintain current activities „ Develop more stable sources of funding „ Transition in leadership for Academic Director (EC has recommended Dr. Susan McMillan)

Challenges for our Center „ Sustained

funding „ Sustaining commitment from individuals with multiple time commitments „ Broadening the circle of funded investigators „ Loss of both of our M.D researchers focused on palliative care (Schonwetter, Weitzner)

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