Hospice program integration: An issue for policymakers

As the number of hospice programs in the United States expands, policymakers face a variety of issues concerning the care of the terminally ill. Do hospice programs offer a truly unique approach in caring for the dying? Are hospice services cost effective? Should hospice programs become integrated into the mainstream of medical care service delivery? Based on data from hospice programs in an industrialized Midwestern state, this paper explores the strategies employed by hospice programs to become integrated, the conflicts that have arisen among providers of hospice care, and the impact of hospice program integration on patient care.

Results show that as hospice programs become more integrated, they have lost some of the idealism on which they were founded, have altered organizational structures, and have changed certain patient services. However, there is no evidence to suggest that integration of hospice programs into the medical mainstream has decreased the quality of patient care or patient satisfaction for hospice services.     

Current status of hospice cancer deaths both in-unit and at home (1995-2000), and prospects of home care services in Japan

In Japan, the first government-approved hospice (GAH) and palliative care unit was established and commenced operations in 1990, and hospice medical care was made eligible for health insurance coverage. By 31 December 2000, the number of GAH institutions had increased to 86 (1,590 beds). The ratio of hospices to population in Japan is currently approximately 1:1.5 million, with an average of one hospice bed for approximately every 80,000 people. This study of institutions reports a survey conducted to determine the number of deaths (hospice unit and home) of GAH cancer patients, and to determine the servicing status of hospice home care for the period 1995 through 2000. The place of death of the patients cared for by GAHs in 2000 were: hospice units 97.7% and home 2.3%. GAH patient deaths (both inpatient and at home) in 2000 was 2.6% of the total number of cancer patients' deaths, an increase of 3.8-fold since 1995. Of the total number of GAH institutions, 62% are engaged in home care services and 91 % offer hospice care by hospice-assigned doctors. In addition, 72% offer team care with nurses based at Home Care Agencies. In order for the hospice (including home care service) to become established in a way most appropriate to each region of Japan, GAH institutions must assume significant promotional roles in their respective regions. One of the goals and assignments of establishing medical service with hospice home care in Japan is to develop the systematic care programs of GAH institutions, which include home care service in addition to the already established hospice unit and outpatient services.     

Cost-effective management of the hospital-based hospice program.

As hospital-based hospice programs proliferate across the country, most are under the leadership of a nurse administrator. Nurse administrators must be prepared to manage the many components that constitute the broad scope of this role. Cost-effective management is the greatest challenge. The author explores this management role, including a discussion of hospice-program reimbursement, hospital-based program advantages, options to increase staff productivity, management of drugs and durable medical equipment, inpatient admissions, volunteer services, and fund-raising. Cost-effective measures are explored throughout the discussion, along with a history and explanation of the hospice concept of care.     

Ethical dilemmas in hospice and palliative care

In order to understand some of the ethical dilemmas that face hospice programs in the United States, one must understand the Medicare Hospice Benefit, which is the model by which hospice programs provide palliative care to terminally ill patients in the United States. Unlike palliative care programs outside the United States, patients must have a prognosis of 6 months or less to receive hospice care under the Medicare Hospice Benefit. Care is reimbursed on a per diem basis, and inpatient care is restricted to pain and symptom management that cannot be managed in another setting. Ethical dilemmas that face physicians referring patients to hospice programs include the ability of clinicians to predict accurately a patient prognosis of 6 months or less, and to what extent hospice programs and clinicians are obligated to provide patients with full information about their illness, as the Medicare Hospice Benefit requires that patients sign an informed consent in order to elect the hospice benefit. There are ethical dilemmas that affect day-to-day patient management in palliative care programs including physician concern over the use of morphine because of possible respiratory depression in the advanced cancer patient, the question of providing enteral or parenteral nutritional support to patients who refuse to eat near the end of life, and the question of providing parenteral fluids to patients who are unable to take fluids during the terminal phases of illness. A final ethical dilemma concerns the methodology for quality of life research in palliative care. By following current research dogma, and only considering patient-generated data as valid, the patient population that most needs to be studied is excluded. A new methodology specifically for palliative care research is needed to provide information on the patients who are cognitively or physically impaired and unable to provide input regarding their needs near the end of life.Presented as an invited lecture at the 6th International Symposium: Supportive Care in Cancer, New Orleans, La., USA, 2–5 March 1994     

Potential medicare reimbursements for services to patients with chronic fatal illnesses

Medicare's payment and coverage patterns most readily serve beneficiaries' needs for episodic interventions such as surgery and diagnostic tests. Except in hospice, supportive services for long-term, worsening illnesses have not been central to financial policies. Thus, providers who aim for comprehensive, high-quality programs for patients facing serious and eventually fatal illness must work within complex reimbursement structures that do not fit patients' needs well. In acute settings, long-term care settings, home health, physicians' visits and hospice, the rules for Medicare reimbursements differ and are rapidly changing. Consequently, many providers do not know how to bill for appropriate care for a person who is very sick and expected to die. Many health-care provider organizations want to enhance services to seriously ill patients and their families by initiating organized palliative care programs. Often, organization leaders are unfamiliar with regulatory and reimbursement issues for palliative care, especially as patients cross programs. This article provides an overview of the reimbursement approaches for Medicare payments. This information gives a foundation for estimating a business plan, for discussions with fiscal intermediaries and with other area provider organizations, and for making financially viable strategic improvements in care for seriously ill patients.     

'I'm not that sick!' Overcoming the barriers to hospice discussions

Hospice programs care for patients facing life-limiting illness. Although patients and family members report that they are satisfied once they are enrolled in a hospice service, many patients are referred late or not at all. Several barriers and misconceptions about hospice likely contribute to its underuse. We explore these issues and provide guidance to more effectively communicate with patients about hospice services.     

Bereavement services: practice and problems

Hospice bereavement services vary widely and are often loosely defined. This paper describes the results of a survey on the form and function of hospice bereavement services completed by NHO Provider Member hospices. It explores issues related to staffing, training, size, services provided, and service priorities. Additionally, data collection and research, referrals, funding, risk assessment, obstacles programs face and the limitations that are inherent in hospice structures are examined. These important elements are presented along with a discussion of critical issues and recommendations for future research and study.     

A qualitative study of caring in hospice wards in Shanghai

Despite the large number of people with cancer who need hospice care, utilization rates at community hospice service in Shanghai are low. This study aimed to review the care provided in these hospice wards and examine the difficulties in delivering service. Fourteen hospice care providers were interviewed, and the data analyzed using qualitative content analysis. Three themes emerged from the interviews: (i) characteristics of hospice patients, mostly cancer patients at the end‐of‐life stage (within 3‐months of life expectancy) who were admitted without awareness of their condition; (ii) components of care, from physicians and nurses who focused mainly on physical problems as psycho‐spiritual care stagnated at a superficial level; and (iii) difficulties in care, including a lack of patients as well as inadequacies in service, along with suggestions for the future. Efforts at improvement should be made in both the health care system and society. To address the lack of patients, doctors in secondary/tertiary care hospitals need improved skills in discussing end‐of‐life care, while the general public needs better awareness and acceptance of hospice care. Solutions should respect the perspective of patients and their families, while hospice care providers must also enhance their skills of communication and psycho‐spiritual care.     

Complementary and alternative medicine in mainstream public health: a role for research in fostering integration

In light of the increased utilization of complementary and alternative medicine (CAM) in recent years, there is an increased possibility that CAM approaches could prove to be important factors in public health, particularly if used within an integrative framework together with mainstream medicine. There exists a defined need for research to explore the integration of conventional health care and CAM approaches, as well as define mechanisms of CAM-based therapies to facilitate such integration. Essential to these goals is the accumulation of a database derived from outcomes-based clinical and basic science investigations. We posit that that CAM clinicians need to be more thoroughly trained as researchers, skilled in developing and recording results of pragmatic studies that could provide credible evidence for the use of CAM in the public sector health care. It is proposed that this may be best achieved through a three-tiered system in which (1) clinician-scientists of both mainstream and alternative disciplines recognize the value of research designed to foster such integration; (2) educational and health care institutions must develop academic and clinical training programs that examine and delineate each disciplines' respective strengths and weaknesses; and (3) such programs are attractive to, and receive continued extramural subsidy. In the broadest sense, such a paradigmatic approach to CAM integration could create a common basis for scientific dialogue, encourage exchanges between medical communities, and establish policies for the development of a true multidisciplinary health care cooperative that is consistent with the current public health model.     

Hospice volunteer programs: a proposed agenda

With the expansion of hospice services, volunteers are being increasingly used to provide emotional, spiritual, and tangible support to the terminally ill and their significant others. Unfortunately, little has been published about the experiences of hospice volunteers. In this paper, we (1) propose a timely agenda for the development and refinement of hospice volunteer programs; (2) outline basic program criteria about which there is emerging consensus; (3) delineate pertinent issues in the screening, training, and job performance of hospice volunteers; and (4) indicate how the implementation of formal program regulations and operations and program evaluation may benefit service recipients and institutional providers.     

Hospice Volunteer Programs: A Proposed Agenda

With the expansion of hospice services, volunteers are being increasingly used to provide emotional, spiritual, and tangible support to the terminally ill and their significant others. Unfortunately, little has been published about the experiences of hospice volunteers. In this paper, we (1) propose a timely agenda for the development and refinement of hospice volunteer programs; (2) outline basic program criteria about which there is emerging consensus; (3) delineate pertinent issues in the screening, training, and job performance of hospice volunteers; and (4) indicate how the implementation of formal program regulations and operations and program evaluation may benefit service recipients and institutional providers.     

The administrative role in hospice planning and organization

When hospices are in the formative stages (e.g. the talking stage or the first-team-meeting stage), concern usually is centered on service issues and quality of care to be provided. Health professionals and community leaders may be inclined to overlook needs for professional administrative direction from the earliest stages in hospice development. Skilled care and compassionate ideals are not enough to insure the growth and stability of community hospice programs. Research shows that problems and pitfalls that cause hospices to close can be avoided through skillful administrative planning, structuring, and marketing techniques applied from the talking stage on in hospice development. This article addresses the specific advantages to new hospices of incorporating administrative resource people in the planning and organization phases of their programs. An annotated bibliography summarizes hospice administrative resources and research.     

A guide to evaluation research in terminal care programs

Pressure for greater accountability is being exerted on programs for care of the terminally ill and increasing the demand for evaluation research. Current documentation of such programs is inadequate in that it is anecdotal and consists primarily of conjecture and case studies fraught with unsubstantiated value judgments. Information essential to the improvement of such programs and the determination of their effectiveness can be derived only through the application of strict experimental methodology. The components, implications, and limitations of rigorous evaluation systems are discussed, and their application in the terminal care setting addressed. The Buckingham evaluation of a hospice's home care service is cited as the first attempt at measurement of the overall quality and effectiveness of a hospice program, and as a model for future evaluation of similar hospice programs.     

Ministry to Persons with AIDS: A Family Systems Approach. By Robert J. Perelli

This article presents results from a study of all hospice programs in a western state. Personal interviews and questionnaires were utilized to collect data about hospice programs, their directors, nurses, social workers, and chaplains. Results from this study indicate the hospice programs in one state do not uniformly deliver “total care,” services designed to address physical, emotional, social, and spiritual needs. Caseloads for nurses were consistent at 9-12 patients per one Full Time Equivalent (FTE) while caseloads for social workers and chaplains varied widely from less than twenty patients per FTE to more than one hundred for some chaplains. Social workers and chaplains identified lack of time as a significant challenge, while nurses were challenged by the emotional needs of patients and families. Social workers and chaplains were significantly more likely than nurses to view the medical needs of patients as the primary focus of their hospice programs. Further, results indicate that characteristics of programs and directors were related to the availability of services and staff perceptions of hospice practices. [Article copies available from The Haworth Document Delivery Service: 1-800-342-9678. E-mail address: getinfo@haworth.com]     

Hospice Programs and the Hospice Movement: An Investigation Based on General Systems Theory

This study used General Systems Theory as the framework for examining hospice programs and the hospice movement. Data drawn from program administrators and archival sources were used to test the thesis that two broad types of hospice programs exist in the United States. Results indicate that independent programs tend to be characterized by processes that amplify change in the extant medical delivery system—that is, deviation amplification. Hospices associated with preexisting institutions tend to be characterized by processes that counteract change, thus maintaining the status quo—that is, deviation counteracting processes.     

An evaluation of dependency assessment: experiences of staff, patients and carers in a UK hospice

AIM: To evaluate the experiences of health-care professionals, service users and carers of service users from a UK hospice in relation to dependency assessment. DESIGN: Qualitative evaluation. SAMPLE: Purposive, convenience sample of hospice staff, patients receiving hospice services and carers of patients receiving hospice services. METHODS: Focus group interviews with hospice staff and carers of hospice service users. Individual interviews with patients. RESULTS: Staff felt the tool used produced inaccurate results, in part because of omissions in content. They did not perceive the data produced affected working practice, e.g. staffing levels. Patients described unobtrusive assessment and stated their needs were met. Carers reported feelings of isolation. They also described differing information and support needs from the patients. CONCLUSION: Further research is required to improve the validity of dependency data collection. Further investigation of carer assessment is also justified.     

Minority representation, prevalence of symptoms, and utilization of services in a large metropolitan hospice

Minority access to and utilization of hospice services is gaining increasing attention in the field of health care delivery systems. This case study describes the 1997 ethnic and racial make-up of a large metropolitan hospice facility located in Arlington, Virginia and compares its composition with the regional community. Demographic data; aggregate physical and psychosocial problems; utilization of services; and admission, discharge, and mortality data were collected and summarized by race and ethnicity. The state provided 1997 regional mortality data by race and ethnicity. When hospice deaths were compared with regional deaths, the hospice provided service to 30% of Caucasians decedents, 20% of Asian decedents, 19% of Hispanic decedents, and 18% of African-American decedents. By using mortality data rather than census data, the discrepancy between minority and Caucasian populations is not as large as has been reported in previous research.     

A guide to evaluation research in terminal care programs

Abstract

Pressure for greater accountability is being exerted on programs for care of the terminally ill and increasing the demand for evaluation research. Current documentation of such programs is inadequate in that it is anecdotal and consists primarily of conjecture and case studies fraught with unsubstantiated value judgments. Information essential to the improvement of such programs and the determination of their effectiveness can be derived only through the application of strict experimental methodology. The components, implications, and limitations of rigorous evaluation systems are discussed, and their application in the terminal care setting addressed. The Buckingham evaluation of a hospice's home care service is cited as the first attempt at measurement of the overall quality and effectiveness of a hospice program, and as a model for future evaluation of similar hospice programs.