The development of a hospice junior volunteer program

In the United States, volunteer services are mandated by hospice Medicare guidelines; volunteers provide a very valuable service to patients, families, and other members of the interdisciplinary team. A hospice junior volunteer program can engage teens in the care of the dying in our communities. This article describes the development and implementation of a junior volunteer program at St. Thomas Hospice in Hinsdale, Illinois.     

A comparative study of hospice services in the United States.

In order to document the implementation of the hospice concept in the United States, 24 hospices, in operation at least one year and serving at least 100 patients, were selected from the National Hospice Organization roster to participate in a survey of organization, staffing, funding, services and population served. All of the hospices offered both home care and bereavement programs but only 41.7 per cent provided an inpatient program. Ten of the hospices were institutionally based, usually in a hospital. Inpatient services were associated with institutional affliations. The average profile of patients admitted to hospice was a 60-year-old White (89 per cent), female (54.3 per cent) cancer patient (94.5 per cent) whose spouse was primary care giver (63.8 per cent). Hospices provided a wide variety of both medical and social services provided by volunteers as well as paid staff. It appears that two divergent types of hospices are developing: 1) independent, heavily volunteer hospices with a variety of professional staff delivering a wide array of social/psychological services with unstable funding; and 2) institutionally based hospices providing both inpatient and home care, greater variety of medical/nursing services, less variety of social/psychological services, using fewer types of volunteers and paid staff, and not experiencing funding problems.     

A specialized hospice for dementia patients and their families

This article reports the development of a small pilot program and briefly describes its activities. The growing number of dementia patients in American communities indicates a need to extend hospice services to these patients and their families. It is difficult to determine at present whether this need could be met more effectively by encouraging existing hospices to accept these patients or by establishing specialized programs such as this one. Research in this area is indicated, as well as the sharing of information among hospices providing care to other specialized groups--people with AIDS or terminally ill children for example. The Alzheimer's Family Care Hospice has provided services to eight terminally ill dementia patients and their families in a pilot project sponsored jointly by the Rush Alzheimer's Disease Center and the Chicago Area Chapter of the Alzheimer's Association. Another six patients did not meet admission criteria.     

Medicaid policies for the hospice care needed by people with Alzheimer's disease

This study surveyed the state Medicaid programs and the state affiliates of the National Hospice Organization to identify Medicaid policies that improve the quality of hospice care provided to Medicaid recipients with Alzheimer's disease (AD). Medicaid programs should expand their use of the home and community-based care waiver programs to include specialized services that allow people with AD to remain at home and to assist family members with their care. Among these services are homemaker services, personal care, a range of respite care, home-delivered meals, and companion services. These waiver programs also allow states to establish more generous eligibility standards for waiver services, enabling more people with AD to quality for waiver coverage than would qualify for the traditional Medicaid program.     

Support in a time of need. The team approach at Mercy Medical Hospice addresses medical, emotional, and spiritual needs

Mercy Medical Hospice, Daphne, AL, uses an interdisciplinary team approach, which includes medical, nursing, social work, pastoral care, pharmacy, therapies, volunteer, and bereavement services. Mercy Medical has two home care offices and offers inpatient respite care for short periods, which is helpful for those who have an inadequate care giver system or need time to work out a better alternative to care in the home. An assessment of medical and nursing care needs, mental and emotional state, and psychological and spiritual needs is the first step after patients enter hospice. The entire team develops a care plan for the patient and family. Among the issues they address are education about the disease process, medication for pain control and symptom management, and how the patient and family cope with the patient's imminent death. Working with the dying and their families can be stressful for staff members, and they offer each other a lot of support. Working in hospice requires good stress management techniques, but staff feel that it is a calling that enriches their lives.     

Evaluation of a hospice program: effects on terminally ill patients and their families

Hospice care in the United States has grown rapidly since its introduction here from England in the mid-1970s. Surprisingly little evaluation of services has been made public, particularly with regard not merely to demographics but also the actual effect of hospice caregiving on patients and families. This article describes an attempt to identify the life dimensions that hospice addresses and the levels of discomfort or well-being of patients and families achieved in a hospice home care program. After assessing the changes in medical, psychosocial, and spiritual status for each of a group of hospice home care patients, the trend toward greater wellbeing of patients in the program can be delineated.     

Continuum of care comes full circle. Adding hospice care allows a Denver system to better meet patient needs

In November 1993 Hospice of Peace, a home hospice program in Denver, was reorganized under a new joint sponsorship of Provenant Health Partners and Catholic Charities and Community Services. Home hospice completes Provenant's continuum of healthcare. Based on the campus of Provenant Senior Life Center, Hospice of Peace employs multidisciplinary professionals who care for patients and their family care givers in their homes. Each hospice team works with a patient's physician and comes from a pool of primary care nurses, certified nurse assistants, social workers, counselors, pastoral care counselors, and specially trained volunteers and bereavement counselors. Respect for human life at all stages is the ethic behind the organizations' hospice efforts. Even at life's end, when aggressive medical treatment is no longer appropriate, healthcare professionals can enhance patients' quality of life and provide bereavement support to their loved ones. Just as Catholic healthcare addresses the spiritual component of healing, so it addresses the spiritual component of dying.     

A comparison of hospice and conventional care

Interviews with relatives and others who knew a group of people dying of cancer in England are reported. The bulk of the paper compares 45 such patients who received hospice care with 126 who received conventional care. The sampling procedure showed that 2.9% of people aged 15 or over at death died in a hospice, and 6.9% received some form of hospice service. The hospice patients differed in several ways from other cancer patients. They had fewer conditions other than cancer recorded on the death certificate, were believed to be more religious and were more likely to suffer from a variety of symptoms and restrictions, including pain. Hospice patients were reported more likely to know that they were dying and respondents' levels of satisfaction with hospice home nursing and in-patient hospice care were significantly higher than for other forms of care. Hospice home nurses were found to have adopted a more advisory approach to nursing care than other home nurses who focussed more on practical care. When final admissions were considered, in-patient hospice care involved fewer medical interventions and, in the last year of life, those receiving hospice services were less likely to have an operation. There were few differences between the two groups in what happened at the time of death, although for in-patient deaths, respondents judged the staff of hospices to be more understanding. The relatives of hospice patients were more likely to be visited by a nurse at home after the death. Few differences in bereavement reaction were found, but those that were suggested that respondents for the hospice group were adjusting better.(ABSTRACT TRUNCATED AT 250 WORDS)     

Hospice: staffing and cost implications for home health agencies

The authors describe a study done to evaluate the implementation of a home health agency-based hospice program. Forty-one hospice patients were compared with a group of terminally ill patients receiving standard home care treatment. The differences in the type, frequency, and intensity of services required by the two groups were evaluated. While hospice care was found to be slightly more staff intensive than standard home care treatment, the differences were minimal. The results suggest that a home health agency with a multidisciplinary staff could implement a hospice program without making dramatic organizational, administrative, or resource change.     

Characteristics of patients receiving hospice care at home versus in nursing homes: results from the National Home and Hospice Care Survey and the National Nursing Home Survey

This study examined 1170 deceased home hospice patients from the 1998 National Home and Hospice Care Survey and 617 deceased nursing home hospice patients from the 1997 and 1999 National Nursing Home Surveys. T tests and Bonferroni adjustments for multiple comparisons were performed to assess differences in characteristics of patients receiving hospice care at home versus in nursing homes. We found that the nursing home hospice population differs significantly from the home hospice population in the United States. Nursing home hospice patients were more likely to be older, have Medicaid as their primary payment source, have dementia and other noncancer primary diagnosis, and receive dietary/nutrition service, medication management, and physician services than home hospice patients.     

A community-wide volunteer-intensive hospice program.

Hospice of Frederick County has developed a volunteer-intensive community-model hospice program that is in many ways different from hospice programs that see themselves as a new specialty within the health care system. The intention of the program is to keep the patient and family in control of decisions and to work closely with existing health care providers selected by the family. Hospice of Frederick County believes hospice care is far more than professional health care. "The Board of Directors believes that hospice is a community concern. The compassion and caring which characterizes hospice belongs in the churches, neighborhoods, schools, workplace, service clubs...in all areas of community life. Hospice volunteers are people from the community who care so much that they are willing to receive special training and supervision to be friends to the dying, their families and their loved ones".     

The impact of the community on the dying process at Hospice of Frederick County.

Hospice of Frederick County is in the very early phases of reaching out beyond the health care system into the community in order to help individuals and families cope with the death of a loved one. By listening to the stories that people have shared with staff and volunteers, Hospice of Frederick County has identified the need for hospice programs that deal with the workplace, the media, recreation, churches, schools, clubs, and all other areas of community life. The response from the community thus far has indicated their approval. However, the community programs depend on volunteers to become operational. A beginning has been made, and time will tell if this volunteer-intensive, community-wide program is right for this community.     

Roles ascribed to volunteers. An examination of different types of hospice organizations

Volunteers have been the hallmark of the hospice movement since its U.S. inception in 1973. As part of the National Hospice Study, volunteer hours and activities were reported monthly in forth participating hospices nationwide. Most volunteers were white females with at least a high school education. The attitude of paid staff toward volunteers was overwhelmingly positive. Overall, the level of volunteer involvement is approximately 1.5 hours per patient each day he or she spends in the hospice program. This breaks down to nearly .80 hours of direct patient care and .70 hours devoted to other activities. While the most prevalent use of volunteers is in the provision of direct patient care in freestanding hospices, volunteers also spend a large proportion of their time in the performance of administrative activities.     

HOSPICE

The authors describe a study done to evaluate the implementation of a home health agency-based hospice program. Forty-one hospice patients were compared with a group of terminally ill patients receiving standard home care treatment. The differences in the type, frequency, and intensity ofservices required by the two groups were evaluated. while hospice care waa found to be ali-e htlv- more staff intensive than standard home care treatment. the differences were minimal. The resulta suggest that a home health agency with a multidisciplinary staff could implement a hospice program without making dramatic organizational, administrative, or resource change.     

Community clinic offers access to care. A system and a city collaborate to care for an immigrant population

The Southwest Community Health Clinic (SCHC) has been providing free preventive healthcare to the poor residents of its Houston neighborhood since June 1991. Sponsored by the Sisters of Charity of the Incarnate Word Health Care System and the city of Houston, the clinic invites healing through hospitality, unlike many free clinics. The family-focused clinic takes a multidisciplinary team approach to preventive healthcare. The staff of approximately 30 healthcare professionals provides prenatal and pediatric care; immunizations; tuberculosis screenings; and a variety of social services for patients' physical, emotional, and spiritual needs. SCHC's well-child program screens children from birth through age five for physical and developmental problems. Clinic staff teach and guide parents on their children's health. The program stresses early identification of developmental delays and disabilities, with referral to appropriate services. SCHC has also implemented a tuberculosis testing program to prevent spread of the disease. Persons who test positive are referred to the City of Houston Department of Health and Human Service's chest clinics for follow-up and treatment. Community outreach is a major ingredient of SCHC's preventive healthcare program. A community health advocate, who is familiar with the cultures, traditions, and languages of the population being served, identifies families needing care and supports their access and use of healthcare services.     

Patient and caregiver satisfaction with end-of-life care: does high satisfaction mean high quality of care?

The purpose of this study was to determine patient and caregiver satisfaction with a hospice program of care. The setting for the study was a home-care hospice in the southeastern United States that provides a full range of services for patients with life-limiting illness and supportive services for family caregivers. Two Likert-type instruments were used to determine satisfaction with staff, communication, education, information provided, symptom management, promptness with service, and overall satisfaction. Some 321 patients and 443 caregivers completed surveys over a two-year period of time. Data indicates the majority of patients and their caregivers were very satisfied with hospice services and the care they received. Providing quality care at the end of life is the goal of hospice. Satisfaction with delivery of care, management of symptoms, and communication with staff are all components of quality care and contribute to quality of life.     

Why hospice day care?

Hospice day care would have to be flexible in order to meet individual needs. It would offer security, warmth and tender loving care, providing an opportunity for patients to socialize and maintain their quality of life. Hopefully day care would provide earlier hospice admissions--extending the continuity of care. Recently the hospice day care standards developed in Michigan were published in the American Journal of Hospice Care. They were developed to provide guidelines for policies and procedures which would assure a quality program. The future of hospice day care depends on further development and implementation of these beginning standards.     

Hospice Care: What Services Do Patients and Their Families Receive?

OBJECTIVE: To determine the degree to which patients and families enrolled with hospice received services across key categories of palliative care, the extent of hospice-level variability in services delivered, and changes over time in services delivered. DATA SOURCE: Nationally representative sample of 9,409 discharged patients from 2,066 hospices in the National Home and Hospice Care Survey. STUDY DESIGN: Observational, cross-sectional study conducted from 1992 to 2000. The primary outcome is the receipt of services across five key categories of palliative care: nursing care, physician care, medication management, psychosocial care, and caregiver support. DATA COLLECTION: Data were obtained via interview with the hospice staff member most familiar with the patient's care, in conjunction with medical record review. PRINCIPLE FINDINGS: In 2000, 22 percent of patients enrolled with hospice received services across five key categories of palliative care. There was marked variation across hospices in service delivery. One-third of hospices provided patients and families services in one or two of the five key categories of palliative care, whereas 14 percent of hospices provided services across five key categories of palliative care. In multivariable analysis, the odds of receiving any additional hospice service was significantly greater in later compared with earlier years (odds ratio=1.10, 95 percent confidence interval 1.01-1.20). Nevertheless, the percentages of patients in 2000 receiving medication management (59 percent), respite care (7 percent), and physician services (30 percent) remained low. CONCLUSIONS: Hospice care for patients and families varies substantially across hospices. Whereas some hospices provide services across the key categories of palliative care, other hospices do not provide this breadth of services. Greater understanding of the causes of variation in service delivery as well as its impact on patient and family outcomes and satisfaction with end-of-life care is a critical subject for future research. Changes in Medicare's reimbursement policies may help hospices increase the range of services provided to patients and families.