The costs of a pediatric hospice program.

The recent literature on economic issues of hospice care leaves several questions unanswered. The most important issue concerns how this type of care can be made financially attractive to patients and families for whom it is a medical option. A major study of a home-based pediatric hospice program permitted a more careful analysis than was previously feasible of the charges for hospice care and how those charges are paid. Data on provider utilization and duration in the program were obtained retrospectively on 177 patients. Costs of incidental expenditures and indirect costs were obtained prospectively from the families of 27 patients. A cost model was developed which is general enough to be used by other hospitals that might contemplate establishing a similar hospice program. Our findings are that insurance coverage, especially for publicly funded patients, is likely to be a major impediment for families deciding whether or not to use a hospice program at home.     

Need satisfaction in terminal care settings

Research comparing hospice and conventional programs of care for the terminally ill has identified few measurable differences in the care provided to patients and their families. Nonetheless, hospice recipients frequently express a higher level of satisfaction with their program of care. This study compared the ability of hospice and conventional care settings to meet the basic emotional needs of families during a member's dying and death from cancer. In addition, the relationship of basic needs satisfaction, perceptions about the nurse, and overall satisfaction with the program of care were explored. One hundred bereaved familial care givers completed a mail questionnaire concerning their perceptions of care at the site of a family member's death. The sites were (1) the home, with care provided by a Medicare certified, community-based hospice program: (2) a hospital affiliated with a Medicare certified, community-based hospice program; (3) a hospital with its own hospice program; and (4) a conventional (non-hospice) hospital. Analyses of quantitative data supported two hypotheses about significant differences between hospice and conventional care. The conventional care group demonstrated the lowest levels of basic needs satisfaction, satisfaction with the psycho-social support of the nurse, and overall program satisfaction. As predicted, overall satisfaction with care was consistent across hospice groups. However, home hospice care provided the highest quality of basic needs satisfaction and the highest level of satisfaction with the nurse. Significant Pearson correlations supported the hypothesis that overall satisfaction is negatively related to unmet basic needs (r = -0.69) and positively related to the psycho-social support received from nurses (r = 0.73).(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.     

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.     

Home care for the dying: homemakers' perspectives

Homemakers are important members of the health care team providing hospice care at home, yet there is little information about their views and experiences. This paper summarizes findings of a survey of homemakers working with a newly-developed program for providing home care for dying patients and their families. Results indicate that homemakers perform multiple roles, which they report tend to be more demanding physically and psychosocially than other kinds of homemaking. Being able to provide comfort in a time of extreme need is satisfying to homemakers, although frustrations exist as well. Implications for program planning and future research are discussed.     

Hospice: a comprehensive program

Having begun operations in 1991 with six employees, four volunteers, and three patients, the St. Louis-based Incarnate Word Family and Alzheimer's Hospice today boasts 44 professional employees, 6 clerical staff, and more than 100 volunteers. The hospice offers a medically supervised home care program in which staff work closely with patients and families throughout the illness and bereavement period. Using a palliative rather than curative approach, the Incarnate Word Family and Alzheimer's Hospice focuses on enhancing the remaining life of the patient. Patients are enrolled based on their need for care, not on their ability to pay for services. To meet the unique needs of certain patients, the hospice offers a variety of specialized services, including pediatric, Alzheimer's, and AIDS care. Collaborative efforts with local agencies include cross-training, continuing education, client referrals, and support services. In 1993 Incarnate Word introduced hospice services to area residential care facilities (RCFs). The program enables RCF residents who develop life-limiting illnesses to remain in the place that they have come to know as home. In March 1994 Incarnate Word Family and Alzheimer's Hospice opened a branch office in north St. Louis. The new location enables the hospice to serve more people and creates an additional resource for physicians treating terminally ill patients. Volunteers provide rest breaks for care givers, help with meal preparation and simple housekeeping, run errands, comfort patients and family, and listen when others may find their story too overwhelming.     

A road map for the last journey: home telehealth for holistic end-of-life care

The Advanced Illness/Palliative Care (AIPC) program started as a 2-year pilot project to determine if a telehealth model of care would benefit veteran patients with life-limiting illness. The goals of the project were to manage the physical, emotional, functional, and spiritual care needs during the last 2 years of patients' lives and to foster an earlier enrollment of patients into hospice by educating providers about palliative care. The AIPC program partners the skills and expertise of both spiritual and medical care practitioners, along with cutting-edge home telehealth devices to improve symptom management and quality of life for veterans and families coping with end of life.     

Partners in pediatric palliative care: a program to enhance collaboration between hospital and community palliative care services

The provision of high-quality palliative care services to dying children and their families often requires extensive collaboration between hospital-based and community-based care teams. This article describes the origins and development of the Partners in Pediatric Palliative Care program, which has provided pediatric-specific educational offerings and fostered joint endeavors between a palliative care service located in a tertiary care children's hospital and a wide range of hospice and home care agencies in 5 states. The Partners in Pediatric Palliative Care program is evaluated in terms of the favorable ratings that attendees have given the educational components, the relatively modest direct costs of mounting the regional meetings, and the expanded capacity to provide home-based palliative services to children and families who desire them. The Partners in Pediatric Palliative Care program provides another feasible means for hospitals and community agencies to work together to improve pediatric palliative care.     

The effects of hospice coverage on Medicare expenditures.

This article reports on the findings of a study of the effects of the hospice program on Medicare Part A expenditures during the first three years of the program. The analysis compared treatment costs between hospice beneficiaries and nonbenefit patients with diagnosis of malignant cancer during their last seven months of life. It was estimated that during the first three years of the hospice program, Medicare saved $1.26 for every dollar spent on Part A expenditures. While the methodology included use of data from Medicare claims to adjust for confounding factors, including self-selection bias, our estimated savings might still have been overstated due to persistent selection effects. The extent of savings also varied according to the hospice's organization. Freestanding hospices, in contrast to those affiliated with either a hospital, nursing home, or home health agency, achieved the greatest savings by utilizing home care more extensively. However, we note that payment rates are increasing and the limits on the benefit period are being lifted, making it possible that the savings related to the hospice program found in this study will not continue. Of greater importance may be the long-term access and quality effects engendered by the benefit's preference for home care.     

Hospice in the Nursing Home: Perspectives of Front Line Nursing Home Staff

ObjectiveUse of hospice has been associated with improved outcomes for nursing home residents and attitudes of nursing home staff toward hospice influences hospice referral. The objective of this study is to describe attitudes of certified nursing assistants (CNAs), nurses, and social workers toward hospice care in nursing homes.Design, setting, and participantsWe conducted a survey of 1859 staff from 52 Indiana nursing homes.MeasurementsStudy data include responses to 6 scaled questions and 3 open-ended qualitative prompts. In addition, respondents who cared for a resident on hospice in the nursing home were asked how often hospice: (1) makes their job easier; (2) is responsive when a patient has symptoms or is actively dying; (3) makes care coordination smooth; (4) is needed; (5) taught them something; and (6) is appreciated by patients/families. Responses were dichotomized as always/often or sometimes/never.ResultsA total of 1229 surveys met criteria for inclusion. Of the respondents, 48% were CNAs, 49% were nurses, and 3% were social workers; 83% reported caring for a nursing home patient on hospice. The statement with the highest proportion of always/often rating was ‘patient/family appreciate added care’ (84%); the lowest was ‘hospice makes my job easier’ (54%). More social workers responded favorably regarding hospice responsiveness and coordination of care compared with CNAs (P = .03 and P = .05, respectively).ConclusionsA majority of staff responded favorably regarding hospice care in nursing homes. About one-third of nursing home staff rated coordination of care lower than other aspects, and many qualitative comments highlighted examples of when hospice was not responsive to patient needs, representing important opportunities for improvement.     

Bereaved Hospice Caregivers' Views of the Transition to Hospice

This study was conducted to explore the communication process between patients, caregivers, and health care professionals, including social workers, through which the decision to choose hospice occurred. Ten bereaved hospice caregivers of patients over age 60 receiving home hospice services participated in this qualitative (phenomenological) study. They represented a range of patient and caregiver characteristics such as age, ethnicity, diagnoses, length of hospice service use, and caregiver relationship to patient. A semi-structured interview guide was used to capture key components in the end-of-life communication process, including discussions caregivers had with health care professionals regarding patients' diagnoses, prognoses, end-of-life care treatment options, and eventual referral to hospice. Themes that emerged included: involvement of health care professionals, relationship with physicians, involvement of patients in decisions, content of discussion, understanding of hospice, and suggestions for improvement. Physicians and social workers were noted to be most involved in the communication, decision making, and transition to hospice; however, a need exists for a more coordinated approach to discussing end-of-life care options with seriously ill patients and their families.     

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 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.     

Care of cancer patients in a home-based hospice program: a comparison of oncologists and primary care physicians.

BACKGROUND. The purpose of this study was to describe a group of patients cared for in a home-based hospice program and to determine if there was a difference in patients' experiences dependent on whether the attending physician was a primary care physician or an oncologist. METHODS. Information about cancer patients admitted to the Burlington Visiting Nurse Association (VNA) Hospice program from January 1986 to December 1990 was reviewed to compare the experiences of the patients of the oncologists with those of the patients of the primary care physicians. RESULTS. There was no difference in average length of stay or overall ambulatory status between the patient groups. The patient group cared for by oncologists had more hospitalizations than the group cared for by primary care physicians though there was not a significant difference in the percentage of hospital vs home deaths. There was a significant difference between the groups in the use of controlled-release morphine, with oncologists using this approach more often than primary care physicians. Oncologists also had more patients on continuous parenteral morphine infusions during hospice care. CONCLUSIONS. Primary care physicians as well as oncologists provide effective cancer care and pain control in this home-based hospice program. The hospice interdisciplinary team can be a valuable resource for physicians in supplying information on appropriate narcotics dosages and routes of administration for their dying patients.     

Hospice Family Members' Perceptions of and Experiences With End-of-Life Care in the Nursing Home

Objective

Even though more than 25% of Americans die in nursing homes, end-of-life care has consistently been found to be less than adequate in this setting. Even for those residents on hospice, end-of-life care has been found to be problematic. This study had 2 research questions; (1) How do family members of hospice nursing home residents differ in their anxiety, depression, quality of life, social networks, perceptions of pain medication, and health compared with family members of community dwelling hospice patients? (2) What are family members’ perceptions of and experiences with end-of-life care in the nursing home setting?

Methods

This study is a secondary mixed methods analysis of interviews with family members of hospice nursing home residents and a comparative statistical analysis of standard outcome measures between family members of hospice patients in the nursing home and family members of hospice patients residing in the community.

Results

Outcome measures for family members of nursing home residents were compared (n = 176) with family members of community-dwelling hospice patients (n = 267). The family members of nursing home residents reported higher quality of life; however, levels of anxiety, depression, perceptions of pain medicine, and health were similar for hospice family members in the nursing home and in the community. Lending an understanding to the stress for hospice family members of nursing home residents, concerns were found with collaboration between the nursing home and the hospice, nursing home care that did not meet family expectations, communication problems, and resident care concerns including pain management. Some family members reported positive end-of-life care experiences in the nursing home setting.

Conclusion

These interviews identify a multitude of barriers to quality end-of-life care in the nursing home setting, and demonstrate that support for family members is an essential part of quality end-of-life care for residents. This study suggests that nursing homes should embrace the opportunity to demonstrate the value of family participation in the care-planning process.     

Not ready for hospice: characteristics of patients in a pre-hospice program.

CONTEXT: There are many patients with terminal illness for whom hospice care would be appropriate, but they either never enroll or enroll very late. In a pre-hospice program designed to help patients make the transition into hospice, we observed that many patients did not make the transition. OBJECTIVES: To understand more about the transition to hospice and the functions of a pre-hospice program, this paper compares patients who enrolled in hospice with those who died in the pre-hospice program. DESIGN, SETTING, AND PATIENTS: Data were collected from a retrospective review of the charts of 123 consecutive patients who enrolled in a prehospice program between January 1, 1995, and December 31, 1996. MAIN OUTCOME MEASURES: The patient's decision to transfer to home hospice or (perhaps, by not making a decision) to remain enrolled in the pre-hospice program until death. RESULTS: At the end of the research period, 38 patients had transferred to hospice and 36 had died without transfer. The remaining 49 patients had uncertain outcomes at the end of the research period. Patients who transferred to hospice were older (P = .02) and more likely to have secondary insurance (P = .05). In addition, those who enrolled in hospice were more likely to live alone (P = .03) and have psychosocial concerns noted by staff on admission (P = .05). CONCLUSIONS: Many patients died in this program that was designed only for transition to hospice. We found statistically significant differences characterizing the groups associated with transferring to hospice. Further studies to find out why these differences exist will be important in order to provide excellent end-of-life care for more people.     

Determinants of hospice utilization among terminally ill geriatric patients

Terminally ill geriatric patients have been found to prefer the type of care provided by home health hospices to the life-sustaining technologies received in hospitals. Nevertheless, disproportionately few dying elderly patients enroll in available hospice programs despite their preferences for, and Medicare's coverage of, hospice services. This study examines several critical factors expected to facilitate or inhibit the utilization of home-based hospice services. Seventy-six critically ill aged patients, their physicians and primary caregivers (e.g., family members) were interviewed about their attitudes and actions regarding the treatment of dying patients. The results indicate that patients who acknowledge their terminal health status, whose physicians disclose the terminal prognosis to them and do not fear malpractice, whose primary caregivers know about hospice and believe the patient would be receptive to enrollment in such a program, have a relatively high probability of home health hospice utilization.     

Unique aspects of caring for dying children and their families

Pediatric hospice has become an important service for children and their families in the past decade. In this article we present unique aspects of StarShine, the hospice of Children's Hospital Medical Center in Cincinnati, Ohio. Length-of-service data demonstrate the need to find innovative ways of encouraging earlier referral to hospice. Several specialized aspects of care, such as long-term bereavement, pet visitation and social services for the family are presented. The initiation of a novel in-home pain management program is described. StarShine has not followed an adult hospice model, and as such, we discuss those unique aspects of dying pediatric patients and suggest specific solutions and interventions designed for children.     

A Comparative Analysis of Medicare Home Care Cost Savings for the Terminally Ill

Claims histories of 1,148 Medicare beneficiaries who died of cancer were examined to determine if traditional home care, compared to hospice home care and conventional oncological care, achieved substantial cost savings. Using analysis of variance and the test for the difference between percentages, the study indicated that although traditional home care beneficiaries were about one-third more costly during the last 24 weeks of life than either the hospice home care or conventional care patients, there appeared to be some cost savings during the last 4 weeks of life. The analysis clearly showed that the substitution of home care visits for hospital days occurred much more readily in hospice home care than in traditional home care. As a consequence, the cost savings potential of hospice home care was substantially greater. The study did not show a tendency for daily hospital costs to decline among the hospice or traditional home care patients as death approached. Thus, the hypothesis that home care services achieve cost savings by reducing the daily wst of hospital inpatient care was not supported.     

Are there racial differences in attitudes toward hospice care? A study of hospice-eligible patients at the Visiting Nurse Service of New York

Research on African American and white attitudes, perceptions, and knowledge of hospice care has focused predominantly on patients and providers in institutions and community-based care settings. Little is known about patients receiving home health services, despite growing trends toward noninstitutional care in the United States. This study of home health clients who are eligible for hospice, but not currently receiving it, found few differences between racial groups with regard to attitudes about end-of-life care. An alarming proportion of African American and white home health clients held erroneous ideas about hospice care and had not discussed this option with their providers. These findings suggest that increased referrals to home-based hospice care among home health clients depend on the availability and professional dissemination of accurate, spiritually sensitive information.