May 2007

Grant Results

SUMMARY

Researchers at Brown Medical School identified, recorded and disseminated collaborative solutions (best practices) for end-of-life care in nursing homes with hospice services. They created a project Web site with information about the project, resources and guidelines, and bibliographies.

Key Findings
Researchers identified these key collaborative solutions:

  • Systematic processes facilitate communication among all levels of nursing home and hospice staff.
  • Hospice chief executive officers are well versed in nursing home regulatory and care environments, are skilled leaders, and convey a consistent vision for hospice nursing home care.
  • Nursing homes share their care expectations with their hospice partners and provide feedback to hospices.

Funding
The Robert Wood Johnson Foundation (RWJF) provided $199,220 to support this unsolicited project from 2003 to 2006.

 See Grant Detail & Contact Information
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THE PROBLEM

About 25 percent of all deaths in America in 1998 occurred in nursing homes, a rapid increase over recent years, according to the Center for Gerontology & Health Care Research at Brown Medical School. However, the capacity of nursing homes to care for dying patients, including providing pain and symptom management, was less than optimal, according to research conducted by Susan C. Miller, Ph.D., M.B.A., a faculty member at the center.

Miller and her colleagues have conducted research that has shown that hospice programs have a positive impact on the end-of-life care nursing home residents receive. (For a description of hospice care, see Appendix 1.) However, most nursing home residents who are dying do not receive hospice care. In 1996, for example, 8 percent of dying nursing home residents used their Medicare hospice benefit, although nearly 66 percent qualified for it, according to the federal Agency for Healthcare Research and Quality. Greater integration of hospice care in nursing homes was necessary.

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RWJF STRATEGY

RWJF pursued three strategies to improve care at the end of life:

  1. To improve the knowledge and capacity of health care professionals and others to care for the dying.
  2. To improve both the institutional environment in health care institutions and public policies and regulatory apparatus to enable better care of the dying.
  3. To engage the public and professionals in efforts to improve end-of-life care.

This grant fits the second and third strategies.

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THE PROJECT

Researchers at Brown Medical School's Center for Gerontology & Health Care Research identified, recorded and disseminated collaborative solutions (best practices) for end-of-life care in nursing homes with hospice services. Project activities included:

  • Reviewing existing research, guidelines and resources related to end-of-life care in nursing homes and assisted living facilities, particularly in relation to hospice care.
  • Working with a national advisory committee to establish guidelines to define collaborative solutions and to identify nursing homes and hospices that were collaborating. Advisory committee members represented nursing homes, hospices and policy-makers. (For a list of advisory committee members and other project contributors, see Appendix 2.)
  • Surveying 93 providers (23 nursing homes and 71 hospices) about 12 key factors for successful collaborations (e.g., understanding of each other's roles and collaborative care planning).
  • Selecting six nursing home/hospice partnerships that have established collaborative solutions and successful collaborations. Project staff asked state nursing home and hospice associations to nominate potential sites; sites could also nominate themselves. Project staff and advisory committee members selected six sites that represented small and large hospice programs and the four major geographic regions in the United States. (For a list of project sites, see Appendix 3.)
  • Visiting the six sites and interviewing an average of 20 staff members at each site. The project director and one of the two project consultants interviewed administrators, nursing home/hospice liaisons, medical directors, directors and assistant directors of nursing, chief financial officers and/or billing staff and other nursing home/hospice staff (e.g., nurses and social workers). The interviews focused on eight key factors in successful collaborations identified through the survey:
    • Administering the collaboration
    • Communication
    • Interdisciplinary practice
    • Education
    • Care planning
    • Care provision
    • Hospice support to resident/family
    • Hospice support to nursing home staff

    For more information about these factors, see Appendix 4.

    The consultants were Kathleen A. Egan, M.A., B.S.N., C.H.P.N., vice president of the Hospice Institute of the Florida Suncoast in Clearwater, Fla., and Cherry Meier, R.N., M.S.N., senior director of public affairs at Vitas Healthcare Corporation in Austin, Texas.
  • Disseminating collaborative solutions for end-of-life care in nursing homes with hospice services through a project Web site, reports, journal articles and more. For more information, see Results and the Bibliography.

The federal National Institute on Aging supported one journal article, as well as other work by project staff on nursing home/hospice partnerships outside the scope of this project, through a $1.3 million grant. Additionally, the Agency for Healthcare Research and Quality supported one presentation, as well as other work by project staff on nursing home/hospice partnerships also outside the scope of this project, through a $446,826 grant.

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RESULTS

Researchers reported the following results to RWJF:

  • A project Web site, Nursing Home End-of-Life Care: The Nursing Home/Hospice Partnership, to disseminate project products. The Web site contains information about practices, policies and guidelines that result in successful collaborations between nursing homes and hospices that provide end-of-life care to nursing home residents, including:
    • A report entitled Nursing Home/Hospice Partnerships: A Model for Collaborative Success — Through Collaborative Solutions (full report and executive summary). The report includes a literature synthesis, survey results, project methodology and the collaborative solutions based upon the visits to the six successful nursing home/hospice partnerships.
    • Resources and guidelines, including project publications and presentations.
    • Bibliographies relating to hospice/palliative care in nursing homes. For descriptions of these bibliographies, see Appendix 5.

    The Web site, posted on Brown Medical School's Web site, went live in June 2005 and received 7,420 hits from then through June 2006. The National Hospice and Palliative Care Organization now manages the Web site.
  • Three journal articles relating to collaborative end-of-life care between nursing homes and hospice:
    • Two articles synthesizing existing research, guidelines and resources: "Hospice and Palliative Care in Nursing Homes," Clinics in Geriatric Medicine (2004; abstract available online) and "The Opportunity for Collaborative Care Provision: The Presence of Nursing Home/Hospice Collaborations in the U.S. States," Journal of Pain and Symptom Management (2004; abstract available online).
    • An article reviewing public health initiatives in support of hospice care in nursing homes: "Quality of Life at the End of Life — The Pubic Health Perspectives," Public Health and Aging (2005).
  • Six presentations on preliminary project findings, including at the annual meeting of the Gerontological Society of America and at National Hospice and Palliative Care Organization conferences. According to the project director, these presentations reached approximately 1,700 nursing home and hospice professionals.

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FINDINGS

Researchers reported the following project findings in Nursing Home/Hospice Partnerships: A Model for Collaborative Success — Through Collaborative Solutions (February 2007; the executive summary is also available online):

Key Collaborative Solutions

Researchers identified these key collaborative solutions as vital to achieving partnership success and as potentially capable of facilitating positive change in existing partnerships:

  • Systematic processes facilitate communication between nursing home and hospice staff and among all levels of staff. At most sites, hospice administrators had activities planned so that they regularly touched base with their nursing home counterparts. At all staff levels, systems and processes facilitated good relationships and communication between nursing home and hospice staff. Hospices took the lead in establishing these systems.
  • Hospice chief executive officers are well versed in nursing home regulatory and care environments, are skilled leaders, and convey a consistent vision for hospice nursing home care. They, together with their staffs, designed a program of hospice care delivery specific to the nursing home's needs. Several hospice administrators spoke of care in the nursing home as being a separate product line, with the nursing home and resident/family as the customer and with systems designed to provide care in a manner compatible with the nursing home environment.
  • Nursing homes share their care expectations with their hospice partners (within regulatory guidelines and as practical) and provide feedback to hospices. Nursing home administrators shared their expectations with hospices and had processes in place to gather information to understand the extent to which hospices were meeting their expectations and those of residents/families. For example, staff at one nursing home asked hospice staff to provide information on the range and frequency of services provided to nursing home residents. Another nursing home wanted hospice staff to teach its employees about hospice care. By sharing expectations, the nursing home is actively involved in molding the partnership and care provided to its residents and their families.

Notable Collaborative Solutions

Researchers also identified these important collaborative solutions as potentially capable of leading to successful partnerships and high-quality outcomes:

Resources/Inputs

  • Nursing homes and hospices share similar philosophies of care.
  • Nursing homes openly acknowledge the occurrence of deaths in nursing homes and have practices in place to provide special care and/or services to dying residents and their families.

Activities: Infrastructure

  • Partnership and staff relationships (at all levels) result from planned systems and activities; they are not dependent on individuals or time and are not left to chance.
  • Hospices cultivate collaborative relationships with nursing homes' managed care providers to promote the providers' recognition and use of the value-added care/support provided by hospices.
  • Mechanisms are in place to facilitate the regular assessment of the partnership.
  • Education addresses relationship building and conflict resolution, the unique aspects of care provided by nursing home and hospice staffs and the nursing home and hospice regulatory and care environments.
  • Dedicated hospice teams provide care focusing exclusively on nursing home residents (as feasible per hospice size).
  • Hospice presence is high in nursing homes.

Activities: Processes

  • Regular meetings and/or dialogue occur between nursing home and hospice chief executive officers.
  • Hospices respond promptly to nursing home requests.
  • Hospice visits are purposefully structured; hospice staff members check in with their nursing home counterparts upon arrival and departure and ask for input.
  • Dialogue on care planning and provision is frequent.
  • Nursing home Medicaid per diem payment is prompt (even when state Medicaid payment is slow) and hospices pay 100 percent of the per diem.
  • Hospices provide support to nursing homes during Medicare/Medicaid surveys as well as with bureaucracy, such as Medicaid applications/follow-up for hospice residents.

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CONCLUSIONS

Researchers offered the following conclusions in Nursing Home/Hospice Partnerships: A Model for Collaborative Success-Through Collaborative Solutions:

  • The successful nursing home/hospice partnerships studied did not occur by chance; they resulted from well-planned efforts by knowledgeable leaders and motivated staff. Regular dialogues between leaders and routine assessment of interorganizational relationships and of the care and services provided led to expert symptom management and to the provision of higher levels of support to dying residents and their families.
  • The most common factor important to successful nursing home/hospice collaboration was good communication. Other important factors were:
    • Mutual respect that permeates the relationship
    • Commitment to collegiality
    • Understanding of each other's business
    • Responsiveness to nursing home/hospice and resident/family needs
    • Flexible staff
    • Continuity of care
    • Successful resident/family outcomes

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LESSONS LEARNED

  1. Use project consultants who are very involved and familiar with any subject they conduct interviews about. The project consultants were experts in both hospice care and nursing home practices. According to the project director, their expertise allowed them to help structure appropriate interview questions and establish rapport with the hospice and nursing home providers during the interviews. The project director felt that the consultants' professional skills complemented her academic skills and knowledge on the same subject. (Project Director)

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AFTER THE GRANT

To disseminate the grant products more widely, the National Hospice and Palliative Care Association began hosting the project Web site in February 2007. The project director plans to continue work on the project, including studying its impact on nursing home and hospice partnerships and hospice referrals.

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GRANT DETAILS & CONTACT INFORMATION

Project

Best Practices for End-of-Life Care in Nursing Homes

Grantee

Brown Medical School (Providence,  RI)

  • Amount: $ 199,220
    Dates: December 2003 to May 2006
    ID#:  049891

Contact

Susan C. Miller, Ph.D., M.B.A.
(401) 863-9216
Susan_Miller@brown.edu

Web Site

http://www.nhpco.org/nursinghomes

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APPENDICES


Appendix 1

Hospice Care

The National Cancer Institute describes hospice as a concept of care that involves health professionals and volunteers who provide medical, psychological and spiritual support to terminally ill patients and their loved ones. Hospice stresses quality of life-peace, comfort and dignity.

A principal aim of hospice is to control pain and other symptoms so the patient can remain as alert and comfortable as possible. Hospice services are available to people who can no longer benefit from curative treatment; the typical hospice patient has a life expectancy of six months or less.

Hospice programs provide services in various settings: the home, hospice centers, hospitals or nursing homes. Patients' families are also an important focus of hospice care, and services are designed to provide them with the assistance and support they need.

According to researchers at Brown Medical School's Center for Gerontology & Health Care Research, an underlying principle of American hospice is to promote patient and family outcomes that are superior to conventional care at the end of life. Hospice care in the United States began in the early 1970s in response to the need to relieve the physical and psychological pain and suffering that may occur during the dying process.

In 1982, the U.S. Congress passed legislation allowing payment for hospice care provided to terminally ill people (those who are diagnosed as having six months or less to live if the disease runs its normal course) with Medicare benefits (generally people 65 years of age and older or younger people with permanent disability). Although the hospice benefit allowed for payment of inpatient hospice care, the intent of the Medicare hospice benefit was for care to be provided primarily in a person's home; for the most part, Americans living in nursing homes did not have access to the hospice benefit. This changed in 1985, when Congress passed legislation to extend the Medicare benefit to people living in nursing homes.


Appendix 2

(Current as of the time of the grant; provided by the grantee organization; not verified by RWJF.)

Project Contributors

Project Consultants and Advisory Committee Members
Kathleen A. Egan, M.A., B.S.N., C.H.P.N.
Project Consultant
Executive Director
The Hospice Institute of the Florida Suncoast
Clearwater, Fla.

Cherry Meier, R.N., M.S.N.
Project Consultant
(Formerly) Senior Director of Public Affairs
Vitas Healthcare Corporation
Miami Beach, Fla.
(As of posting date of this report) CEO, Four Seasons Hospice & Palliative Care
Hendersonville, N.C.

Co-Investigators and Advisory Committee Members
Susan Miller, Ph.D., M.B.A.
Principal Investigator
Center for Gerontology & Health Care Research and Department of Community Health
Brown University School of Medicine
Providence, R.I.

Joan Teno, M.D., M.S.
Co-Investigator
Center for Gerontology & Health Care Research and Department of Community Health
Brown University School of Medicine
Providence, R.I.

Other Advisory Committee Members
Regina Jones, R.N., B.S.N., D.N.S.
Director of Nursing
Grand Island Health Care Center
Middletown, R.I.

Patricia Liuzzi, R.N.
Staff Nurse, Hospice
Visiting Nurse Services of Newport and Bristol Counties
Portsmouth, R.I.

Cherry Meier, R.N., M.S.N.
Project Consultant
(Formerly) Senior Director of Public Affairs
Vitas Healthcare Corporation
Miami Beach, Fla.
(As of posting date of this report) CEO, Four Seasons Hospice & Palliative Care
Hendersonville, N.C.

Vincent Mor, Ph.D.
Chair, Department of Community Health
Center for Gerontology & Health Care Research
Brown University School of Medicine
Providence, R.I.

Evvie Munley, B.S.W.
Senior Health Policy Analyst
American Association of Homes and Services for the Aging
Washington, D.C.

LuMarie Polivka-West, M.S.P.
Director of Policy and Quality Assurance
Florida Health Care Association
Tallahassee, Fla.

Roberta L. Pontzer, R.N., B.S.N., M.S.I.M.
National Director of Hospice Services
Sunrise Senior Living
McLean, Va.

Donald Redfoot, Ph.D.
Senior Policy Adviser, Public Policy Institute
American Association of Retired Persons
Washington, D.C.

Dan Timmel, L.C.S.W.
Medicaid Policy Analyst
Centers for Medicare & Medicaid Services
Baltimore, Md.

Analee Wulfkuhle
President and CEO
Home & Hospice Care of Rhode Island
Pawtucket, R.I.

Project Staff
Lisa C. Welch, Ph.D.
Project Coordinator
(Formerly) Center for Gerontology & Health Care Research
Brown Medical School
Providence, R.I.
(Currently) Assistant Professor of Sociology
Department of Sociology and Criminal Justice Studies
Southern Illinois University
Edwardsville, Ill.


Appendix 3

Project Study Sites by State

California:
Alderson Convalescent Hospital, Woodland, Calif.
Yolo Hospice, Davis, Calif.

Michigan:
Hospice of Southwest Michigan, Kalamazoo, Mich.
Laurels of Galesburg, Galesburg, Mich.

Minnesota:
Ambassador Good Samaritan Center, New Hope, Minn.
Hospice of the Twin Cities, Plymouth, Minn.

Florida:
Pines of Sarasota, Sarasota, Fla.
TideWell Hospice and Palliative Care, Sarasota, Fla.

New Jersey:
Hunterdon Care Center, Flemington, N.J.
Hunterdon Hospice, Flemington, N.J.

North Carolina:
Brian Center Health and Rehabilitation, Durham, N.C.
Four Seasons Hospice and Palliative Care, Henderson, N.C.


Appendix 4

Key Factors to Successful Nursing Home/Hospice Collaborations

  • Administering the collaboration:
    • Practices: Fostering good relations.
    • Continuing barriers: Maintaining functioning versus dying, Medicare Part A skilled nursing home care versus Medicare hospice, curative versus palliative (pain relief) care.
  • Communication (including conflict resolution):
    • Practices: Open and frequent communication, use of hospice liaisons to improve communication with nursing homes.
  • Interdisciplinary practice:
    • Practices: Cultivating personal relationships.
    • Continuing barriers: Competition and turf issues, staff judgment issues and other issues.
  • Education:
    • Practices: Education for hospice and nursing home staff and for families.
    • Barriers: Nursing home time constraints and turnover.
  • Care planning:
    • Practices: Joint care plan meeting, integrated care plan.
    • Barriers: Lack of invitations to meetings, poor attendance.
  • Care provision:
    • Practices: Consistency of hospice team in nursing home.
    • Barriers: Multiple insurance providers may be in one nursing home, lack of consistent communication regarding resident changes/needs.
  • Hospice support to resident/family:
    • Practices: Memorial services, other.
  • Hospice support to nursing home staff:
    • Practices: One-on-one support, education, other.


Appendix 5

Project Bibliographies

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BIBLIOGRAPHY

(Current as of date of this report; as provided by grantee organization; not verified by RWJF; items not available from RWJF.)

Articles

Miller SC. "Supporting Public Health's Role in Addressing Unmet Needs at the End of Life-An APHA Policy Resolution Written on Behalf of the Gerontological Health Section of APHA," approved by APHA Governing Council, APHA Association News, 2005 Policy Statements: 20, 2005.

Miller SC and Mor V. "The Opportunity for Collaborative Care Provision: The Presence of Nursing Home/Hospice Collaborations in the U.S. States." Journal of Pain and Symptom Management, 28(6): 537–547, 2004. Abstract available online.

Miller SC and Ryndes T. "Quality of Life at the End of Life: The Public Health Perspective." Generations, 41–47, Summer 2005. Available online.

Miller SC, Mor V and Teno J. "Hospice and Palliative Care in Long-Term Care Facilities." Clinics in Geriatric Medicine: End-of-Life Care, 20(4): 717–734, 2004. Abstract available online.

Reports

Miller SC. Nursing Home/Hospice Partnerships: A Model for Collaborative Success-Through Collaborative Solutions. Providence, RI: Brown Medical School, Center for Gerontology & Health Care Research, February 2007. Also available online.

Miller SC and Egan K. How Can Clinicians with Diverse Backgrounds and Training Collaborate with One Another to Care for Patients at the End of Life? Nursing Home/Hospice Partnerships. Unpublished, January 2006. Also available online.

Survey Instruments

"'Best Practices' of Successful Nursing Home/Hospice Collaborations," The Hospice Institute of the Florida Suncoast and American Association of Homes and Services for the Aging, fielded September–October 2004.

"RWJF Collaborative Solutions Site Visit Questionnaires," six instruments (each modified for nursing home or hospice site visit), Brown Medical School, Center for Gerontology & Health Care Research, fielded June–September 2005.

World Wide Web Sites

www.nhpco.org/nursinghomes, Nursing Home End-of-Life Care: The Nursing Home/Hospice Partnership. The project Web site contains information, including annotated bibliographies, about practices, policies and guidelines that facilitate successful collaborations between nursing homes and hospices for providing end-of-life care to nursing home residents. Providence, RI: Center for Gerontology & Health Care Research, Brown University Medical School, July 2005. In December 2006, the National Hospice and Palliative Care Organization, Alexandria, VA, became the Web site host.

Presentations and Testimony

Susan C. Miller, "The Barriers and Facilitators to Hospice Care in Nursing Homes: Are There Feasible and Affordable Policy Fixes?" at the Annual Meeting of the Gerentological Society of America, November 22, 2004, Washington. Also available online.

Susan C. Miller, "But, 'She was comfortable…' — Hospice Referral When Something 'Bad' Happens, Not as a Routine Referral?" at the Annual Meeting of the Gerontological Society of America, November 22, 2004, Washington. Also available online.

Susan C. Miller and Pedro Gozalo, "Enrollment in Medicare Hospice by U.S. Nursing Home Residents: Variation by States and Their Policies," at the Annual Meeting of the Gerontological Society of America, November 27, 2005, Orlando, FL. Also available online.

Susan C. Miller, Kathy Egan and Cherry Meier, "Nursing Home End-of-Life Care: The Nursing Home/Hospice Partnership," at the National Hospice and Palliative Care Organization's 7th Clinical Team Conference and Scientific Symposium, April 2006, San Diego. Also available online.

Susan C. Miller and Kathy Egan, "Successful Collaboration: Working with Long-Term Care Facilities," an audio Web seminar sponsored by the National Hospice and Palliative Care Organization, May 23, 2006. Also available online.

Susan C. Miller and Lisa Welch, "Understanding How Nursing Homes and Hospices Collaborate Successfully," at the Annual Meeting of the Gerontological Society of America, November 2006, Dallas. The Gerontologist, October 2006.

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Report prepared by: Margaret O. York
Reviewed by: Lori De Milto
Reviewed by: Marian Bass
Program Officer: Rosemary Gibson