Hospice Volunteer Survey Could Lead to Cuts in Programs
From 1996 to 1998, the University of Virginia Health Sciences Center, Charlottesville, Va., carried out Final Gifts, a national research study of hospice volunteerism.
It was designed to elicit information about the activities, motivation and experiences of hospice volunteers. The study also sought respondents' opinions about relevant public policy issues.
Nearly 1,400 volunteers and 500 paid professional staff, drawn from a random sample of 24 Medicare-certified hospices, completed the extensive mail survey, making it the largest and most detailed study of hospice volunteerism ever conducted. Additional data were collected through interviews with administrators.
- Some 80 percent of hospice volunteers are females with a median age of 55; more than 30 percent are 65 or older.
- The majority of volunteers (more than 70 percent) have provided direct care in patient homes, with each serving a mean of more than seven dying patients.
- A large majority of hospice volunteers are satisfied with their work.
- Over 90 percent of volunteers and professionals agree or strongly agree that volunteers are essential to the mission of hospice.
- Primary criticisms cited by staff include that volunteers get too emotionally involved with patients and families (30 percent).
- Hospice leaders assert that maintaining a strong volunteer program requires a significant investment of human and other resources at a time of flat or declining revenues and increasing medical and pharmaceutical costs.
While the responses indicate a broad commitment to volunteerism in the hospice industry, the researchers concluded cost concerns are likely to induce hospices to reduce future investments in volunteer programs unless their effects on patient outcomes are documented more accurately.
The Robert Wood Johnson Foundation (RWJF) supported the study with a grant of $107,664.
Hospices, which provide care for 16 percent of the approximately 2.5 million people who die in the United States annually, traditionally rely on donated services for administrative tasks, direct interaction with patients, and for the sense of mission that was a defining characteristic of the early hospice movement.
As hospices move closer to the medical mainstream increasing in size, complexity, and competitiveness and with the entry of for-profit chains, the traditional role of the hospice volunteer may be changing.
To understand better what motivates people to become and remain hospice volunteers and to understand better how labor is divided between hospice volunteers and paid staff, the University of Virginia Health Sciences Center designed Final Gifts, a national research study of hospice volunteerism at Medicare-certified hospices.
In addition to volunteers, paid professional staff were surveyed to assess their perceptions of the volunteer role in hospices. Executives at participating sites were interviewed to build a profile of the current state of hospices in the evolving health care system.
Final Gifts is the largest and most detailed study of hospice volunteerism ever conducted, according to the principal investigator. The University of Virginia Center for Survey Research (CSR) was hired to help design a stratified random sample of 24 organizations, which were selected based on size, tax status, institutional affiliation, and geographic region.
The CSR administered the 45-question survey, mailing it to 1,972 volunteers and 761 staff randomly chosen from the hospices in the study. The overall response rate was approximately 68 percent, with volunteers responding at a slightly higher rate than staff (responses were received from 1,400 volunteers [71 percent] and 500 staff [66 percent]).
These data were supplemented by 54 interviews with the volunteer manager and a senior executive at each organization, as well as by interviews with other key informants in the hospice industry.
- 80 percent of hospice volunteers are females with a median age of 55; more than 30 percent are 65 or older. Half of all hospice volunteers are employed full- or part-time.
- The majority of volunteers (more than 70 percent) have provided direct care in patient homes, with each serving a mean of more than seven dying patients. Volunteers provide a mean of 10 hours of service per month, and over half of them also volunteer with another community group.
- A large majority of hospice volunteers are satisfied with their work and a significant percentage (36 percent) found their work extremely satisfying.
- Over 90 percent of volunteers and professionals agree or strongly agree that volunteers are essential to the mission of hospice, citing as a primary value the fact that they provide companionship, support, and respite for patients and families in times of crisis.
- Primary criticisms cited by staff are that volunteers get too emotionally involved with patients and families (30 percent), exceed the boundaries of the volunteer role (22 percent), fail to do what they promise (22 percent), and give inappropriate medical advice to patients and families (19 percent).
- While agreeing that volunteers improve the quality of hospice care, volunteer managers and hospice leaders were concerned about the scarcity of the traditional hospice volunteers (middle-aged, educated white women) and the difficulty of recruiting nontraditional populations (minority and male volunteers).
- Hospice leaders assert that maintaining a strong volunteer program requires a significant investment of human and other resources at a time of flat or declining revenues and increasing medical and pharmaceutical costs. While the responses indicate a broad commitment to volunteerism in the hospice industry, the researchers concluded cost concerns are likely to induce hospices to reduce future investments in volunteer programs unless their effects on patient outcomes are documented more accurately.
- 65 percent of staff and 78 percent of volunteers disapproved of the Medicare requirement that at least 5 percent of staffing hours must be delivered by volunteers. Disapproval stemmed from the perception that it creates ambiguity about whether hospices use volunteers because they value them or because they are coerced into using them.
Results of the survey have been presented at meetings of hospice professionals. A short piece appeared in The Hospice Professional, a publication of the National Hospice Organizations. (See the Bibliography for details.) The survey protocol has been shared with other researchers, and six of the original survey questions were used in a study of hospice volunteers in Kentucky, conducted at the University of Kentucky School of Social Work.
In June 1999 a paper by one of the coinvestigators, "Dilemmas of Coerced Voluntarism: The Care of Volunteers in Hospice," was accepted for presentation at meetings of the Association for Research on Nonprofit Organization and Voluntary Action to be held in Washington, DC, in November 1999.
- In hindsight, the researchers reflected that recruiting participating organizations took somewhat longer than they expected and that they had not requested adequate time and funding to analyze all of the data and to publish the results.
AFTER THE GRANT
The project coinvestigator received funding from the Individual Project Fellowship Program of the Open Society Institute to conduct a follow-up study and to analyze and publish the results of both studies. The new study, a replication of the volunteer survey component of Final Gifts, is being fielded on a sample of volunteers in non-Medicare-certified hospice support programs who were not included in the original study.
Through this additional sampling, differences and similarities between volunteers in the more medicalized and professional-dominated Medicare-certified hospices and volunteers in predominantly volunteer organizations will be explored. When the second study is complete, the investigators expect to submit journal articles for publication. Building on lessons learned from this project, further research is planned on the issues of Medicare's requirements concerning hospice use of volunteers and End-of-Life care.
GRANT DETAILS & CONTACT INFORMATION
National Survey of Hospice Volunteers and Staff
University of Virginia Health Sciences Center (Charlottesville, VA)
Dates: December 1996 to November 1998
Carolyn L. Engelhard
(Current as of date of this report; as provided by grantee organization; not verified by RWJF; items not available from RWJF.)
Herrmann J. "Showing the Value of Volunteers: The Challenges Ahead." The Hospice Professional, Spring: 1617, 1998.
"National Study of Hospices and Hospice Volunteerism Survey." University of Virginia Center for Survey Research, fielded April 1997. Eight requests for the instrument have been received.
Presentations and Testimony
Herrmann J and Cushman FR, "The Changing Role of Volunteers in Hospice, " at the Annual Symposium and Exposition of the National Hospice Organization, Atlanta, Ga., October 1997.
Herrmann J and Cushman FR, "Volunteerism and Health Services: The Case of US Hospices," at the Virginia Health Policy Center Brown Bag Current Health Issues Series Special Session, Charlottesville, Va., October 1997.
Herrmann J, "Are Volunteers Still the Heart of Hospice? Reflections on a National Study of Hospice Volunteerism," at the Annual Conference of the Virginia Association for Hospices, Charlottesville, Va., April 1998.
Herrmann J, "The Future of Volunteers In Hospice," at the Annual Meeting of the Hospice Association of America, Atlanta, Ga., October 1998.
Herrmann J, "The Changing Role of Volunteers in Hospice: Results of a National Study," at the Annual Symposium and Exposition of the National Hospice Organization, Dallas, Texas, November 1998.
Herrmann J, "Dilemmas of Coerced Voluntarism: the Case of Volunteers in Hospice," at the Association for Research on Nonprofit Organizations and Voluntary Action (ARNOVA), Washington, D.C., November 1999.
Report prepared by: Jayme Hannay
Reviewed by: Karyn Feiden
Reviewed by: Janet Heroux
Program Officer: Rosemary Gibson