Hospice Care: Staff, Volunteers, and Patient Services

Introduction to Hospice Care

There are very few critics of the hospice organization, and rightfully so. Who could criticize such a helpful, vital institution? If hospice were not available to provide its pivotal services, then who would be there? A key reason for hospice's value is the general acceptance among thoughtful people that Americans do not handle death very well. When death strikes a family member suddenly, or even when a long-term illness leads inevitably to death, most families are not prepared. Hospice delivers humanitarian care and nurturing not only to the terminally ill, but also to their loved ones — before and after the passing.

The specific services offered through the interdisciplinary team of medical professionals and trained volunteers that make up hospice include the following: medical and personal care visits; inpatient and home respite care; interdisciplinary team services; prescription medications; medical supplies; durable medical equipment; outpatient chemotherapy or radiation; counseling and spiritual assistance for families; and bereavement services for up to one year for surviving family members (Ascribe, 2004).

Hospice Services and Successes

The coast-to-coast reach of hospice is impressive by any standard, particularly given that this is largely a non-profit enterprise and that death and dying is a topic few people can relate to or deal with effectively. According to the National Hospice and Palliative Care Organization (NHPCO) (Ascribe, 2004), America's 3,200 hospice providers gave assistance to 885,000 dying citizens in 2002 — a number up 15% from the 775,000 cared for in 2001.

One important reason for the increase in individuals served in 2002 is widespread knowledge among the ill that Medicare offers a Hospice Benefit. Upwards of 80% of those served by hospice in 2002 had received humanitarian funds from the Medicare Hospice Benefit program. That Medicare assistance is "considered to be one of the great humanitarian pieces of federal legislation" (Ascribe, 2004). Since Congress passed the Medicare Hospice Benefit in 1982, more than six million Americans have received "the highest quality of care at end-of-life," according to Ascribe.

Another likely reason for the record number of terminally ill patients served by hospice in 2002 is that families and patients are increasingly dissatisfied with less-than-helpful hospital services. Research conducted by Brown University found that "persons dying in institutional settings [such as hospitals and other health care facilities] received inadequate pain management, little emotional support, and poor communication from physicians" (Ascribe, 2004).

By contrast, research published in the Journal of the American Medical Association found that "more than 70% of family members of patients who received hospice care at home rated care as 'excellent'" (Ascribe, 2004). The same research revealed that "bereaved family members of patients with home hospice services reported higher satisfaction, fewer concerns with care, and fewer unmet needs" compared with those in other care settings.

The NHPCO also reports that although data shows "one-third of hospice patients die within seven days" of entering hospice services, the organization believes that a period of "one to two months or more" would be far more beneficial to families, both in terms of quality of care and in reducing exorbitant hospitalization costs.

Hospice Volunteers and Staff: Survey Findings

The Robert Wood Johnson Foundation (RWJF) provided grant funding ($107,664) to a university Center for Survey Research for a nationwide research project into the "activities, motivation, and experience of hospice volunteers" (Hannay, 2000). The survey, titled "Final Gifts," found that approximately 16% of the roughly 2.5 million people who die in America annually rely on donated services for administrative tasks and hands-on interaction with patients.

The survey consisted of 45 questions and was mailed to 1,972 volunteers and 761 paid hospice staff. The response rate was approximately 68% — with 71% of volunteers responding and 66% of paid staff responding (Hannay, 2000). The results offer illuminating insights, particularly for those who may one day need hospice services. Over 80% of hospice volunteers are women, with a median age of 55; notably, 30% of those volunteers are 65 years of age or older.

About half of all hospice volunteers hold full-time or part-time jobs in addition to their humanitarian work. More than 70% of hospice volunteers have provided hands-on, "direct care" in the homes of patients, with each direct-care volunteer providing an average of 10 hours of service per month. Of that 70%, over half also participate in other charitable activities.

When asked whether their work with hospice is personally satisfying, the great majority said "yes," and 36% responded that they are "extremely" satisfied with their involvement. Over 90% of the volunteers and professionals surveyed either "agree" or "agree strongly" that "volunteers are essential to the mission of hospice." The primary value cited by this group is that volunteers "provide companionship, support, and respite for patients and families in times of crisis."

The Final Gifts survey also captured criticisms from respondents. Thirty percent said volunteers "get too emotionally involved with patients and families"; 22% reported that volunteers "exceed the boundaries of their volunteer role" and "fail to do what they promise"; and 19% said volunteers "give inappropriate medical advice to patients and families."

One concern raised by the survey is hospice's difficulty "recruiting nontraditional populations (minority and male volunteers)." A concern expressed by hospice leadership is the need for a continuing and growing "investment of human and other resources," as recent contributions have not been able to meet the growing demand for these vital services. More information on the history and structure of hospice care provides useful context for understanding these organizational challenges.

Conclusion and Policy Recommendations

An article in U.S. News & World Report asserts that though "most" people would "like to die at home," only "one in four Americans is actually granted that wish" (Shute, 2002). Clearly, more needs to be done. Nearly half of the 1.6 million Americans living in nursing homes "are suffering persistent pain," yet only 23% of hospitals offer hospice services (Shute, 2002). Further, Medicare — although covering 75% of people who die in a given year — requires patients to "give up lifesaving treatments" before receiving palliative care.

Politicians and community leaders must roll up their sleeves and make hospice care more universal, ensure that hospice volunteers are more fully trained, and reform existing Medicare rules to be more patient-friendly. The evidence reviewed here points unmistakably toward a system that, while already delivering meaningful comfort to millions, remains constrained by policy barriers, short referral timelines, and inadequate provider education — all of which are correctable with sufficient political will and public investment.

References

Ascribe Business & Economics News Service. (2004, February). Hospice effective in delivering quality care to dying Americans according to current research; hospice serving record number of terminally ill patients, families. National Hospice and Palliative Care Organization.

Fleming, S. O., & Malespina, J. (2003). Care for the dying in America: Two perspectives. JAAPA — Journal of the American Academy of Physicians Assistants, 16, 11–16.

Hannay, J. (2000). National survey of hospice volunteers and staff. Retrieved April 20, 2004, from The Robert Wood Johnson Foundation website:

Shute, N. (2002). A time before dying (national review of end-of-life care). U.S. News & World Report, p. 52.