History of the National Hospice Organization

The National Hospice Organization grew out of efforts by the founders of the earliest hospice programs in the United States to protect their emotional investments in hospice care, to advocate for hospice interests in Congress and other public policy forums, to define standards for the fledgling movement, and to provide education on the nuts and bolts of running hospice programs for others who were interested in starting hospices in communities from coast to coast. Unlike the model of St. Christopher’s Hospice in England, which began as a free-standing in-patient facility and later added home care services, most U.S. hospices started as home care-based programs, often largely manned by volunteers. Among the crucial issues that have dominated the work of NHO during its first 21 years were passage and maintenance of the Medicare hospice benefit, ideological battles over the hospice philosophy, and efforts to extend hospice care to other populations, such as people with AIDS. [Article copies available for a fee from The Haworth Document Delivery Service: 1-800-342-9678. E-mail address: getinfo@haworthpressinc.com <Website: http://www.haworthpressinc.com>]     

Personal Reflections

A hospice pioneer and veteran of 23 years reflects on the early days of the hospice movement in the United States. The political, social and economic forces, which shaped the industry, are addressed from a local state and national perspective. Current challenges are briefly referenced with a call for hospice leaders to recognize the need for and identify where hospice fits into the broad end of life discussions. [Article copies available for a fee from The Haworth Document Delivery Service: 1-800-342-9678. E-mail address: getinfo@haworthpressinc.com <Website: http://www.haworthpressinc.com>].     

Spirituality

At the present time, there is a widening search for spirituality as distinct from organized religion, particularly as it relates to well-being, wholeness, and healing. In both professional and lay contexts, spirituality has come to the forefront of public consciousness. The place of spirituality within the hospice movement is not unaffected by this shift in popular priorities. Once the prerogative of chaplains and clergy, the nurturing of spiritual journeys is now becoming a common concern. Experiencing sensory spirituality can provide both caregivers and those for whom they care a blessed respite for bodies, minds, and spirits. [Article copies available for a fee from The Haworth Document Delivery Service: 1-800-342-9678. E-mail address: getinfo@haworthpressinc.com <Website: http://www.haworthpressinc.com>]     

Predictors of Family Members’ Satisfaction with Hospice

This large, long-term study of families served by hospice found that nearly 95 percent said hospice had been helpful. Still, about 30 percent of family members said there was something they wish hospice had done differently. Those who had some complaint were more likely than those who had no complaints to be women, to report the patient had needed a great deal of care, to have a history of depression and greater levels of distress before and after the patient’s death, and to be dissatisfied with the support they received from family members and friends. [Article copies available for a fee from The Haworth Document Delivery Service: 1-800-342-9678. E-mail address: getinfo@haworthpressinc.com <Website: http://www.haworthpressinc.com>]     

Hospice Care and Palliative Care: A Perspective from Experience

The establishment of the first Department of Pain Medicine and Palliative Care in a Medical Center in the United States is noteworthy. Since the design of the Department integrates a full-functioning hospice program within it, that has both a dedicated inpatient unit and extensive home care program, this Department represents a milestone in the development of the hospice movement, with full interrelationship between palliative care and hospice care. This paper will explore this interrelationship, its implications, and some of the background. [Article copies available for a fee from The Haworth Document Delivery Service: 1-800-342-9678. E-mail address: getinfo@haworthpressinc.com <Website: http://www.haworthpressinc.com>]     

Symptom Control in Hospice – State of the Art

There are a myriad of physical symptoms which can complicate the care of patients with advanced disease. Without knowledge of and attention to these distressing symptoms, the rest of the work of the interdisciplinary hospice team is greatly hampered. In this article, we review the management of ten prevalent symptoms in hospice care and to identify areas of clinical investigation underway and point to future areas ripe for investigation. [Article copies available for a fee from The Haworth Document Delivery Service: 1-800-342-9678. E-mail address: getinfo@haworthpressinc.com <Website: http://www.haworthpressinc.com>]     

The Hospice Handbook. By Larry Beresford

Hospice patients are more likely to die at home than patients involved in conventional medical care, but the proportion of home deaths varies between programs. A study of the effect of hospice administrative characteristics on inpatient death rates is presented. Data from hospice programs that operated in New York State between 1993 and 1995 were obtained from the State Health Department and from publications of the National Hospice Organization. Inpatient death rates varied significantly between different operating structures: 11% for hospices that were divisions of home health care agencies; 34% for hospices that were divisions of hospital corporations; and 20% for hospices that were independent hospice corporations. This difference was explained by the presence of dedicated inpatient hospice units: Programs with such units demonstrated higher inpatient death rates than those without (42% versus 11%; P?[Article copies available for a fee from The Haworth Document Delivery Service: 1-800-342-9678. E-mail address: getinfo@haworthpressinc.com http://www.haworthpressinc.com>]     

New Initiatives Transforming Hospice Care

Hospice care has been successful in serving a large segment of the terminally ill population in the United States. This article addresses a number of significant trends that may impact the future of hospice care. It is proposed that as many as one-third of those who die will not be in a position to make use of any end-stage program of care. Of the remaining, some will have difficulty being served by hospices due to uncertain prognosis and continued efforts at curative treatment. New models of caring for chronically terminally ill persons are being developed and are reviewed. A clearer definition of who ought to be served by hospice programs is encouraged. [Article copies available for a fee from The Haworth Document Delivery Service: 1-800-342-9678. E-mail address: getinfo@haworthpressinc.com?<?Website: http://www.haworthpressinc.com>]     

The NHO Medical Guidelines for Non-Cancer Disease and Local Medical Review Policy: Hospice Access for Patients with Diseases Other Than Cancer

For much of its history, hospice focused on problems related to malignant disease. Recently, however, non-cancer diagnoses such as congestive heart failure, emphysema and Alzheimer’s disease have comprised an increasing proportion of hospice referrals. This paper details criteria published by NHO and adopted by the US Health Care Financing Administration for hospice eligibility for common noncancer diagnoses. A provisional list of domains for documenting “evidence of rapid decline,” by which patients with advanced disease who do not meet criteria can still be certified for the Medicare Hospice Benefit, is also outlined. [Article copies available for a fee from The Haworth Document Delivery Service: 1-800-342-9678. E-mail address: getinfo@haworthpressinc.com <Website: http://www.haworthpressinc. com>]     

Documenting the Impact of Hospice

Hospice care has had an impact at many levels-on individual patients and families, on the health care industry, and on society. However, no comprehensive body of evidence has been generated that documents the impact of hospice care in terms that are meaningful to competitors, referral sources, and consumers. In part, this is because of the many challenges for evaluating hospice care. This paper describes recent efforts in the documentation of the value of hospice which have focused on outcomes measurement by individual providers rather than on large scale studies. Several groups are working to develop reliable measurement tools, to support standardized measurement in large numbers of hospices, and to collect information for benchmarking and comparison. Measurement of the impact of hospice care will set standards for other providers of end-of-life care and will document the expertise and knowledge of hospice professionals. Once established as centers of excellence in care of the dying, hospices will be well positioned for whatever delivery models may evolve for end-of-life care. [Article copies available for a fee from The Haworth Document Delivery Service: 1-800-342-9678. E-mail address: getinfo@haworthpressinc.com <Website: http://www.haworthpressinc.com>]     

Origins: An American Perspective

The birth of hospice in the United States was fostered by the work of Florence Wald, former Dean of the Yale School of Nursing. Her activities are emblematic of the dedication of many other hospice volunteers who made hospice a reality in the United States. Nurturer, humanitarian and visionary, we salute Florence Wald and the many others who have contributed to the change in how end-of-life care is rendered in the United States. Congratulations and well done. [Article copies available for a fee from The Haworth Document Delivery Service: 1-800-342-9678. E-mail address: getinfo@haworthpressinc.com <Website: http://www. haworthpressinc.com>]     

The Evolution of Volunteerism and Professional Staff Within Hospice Care in North Carolina

Although the pursuit of Medicare certification has been one of the most controversial events in hospice history no study has examined its impact using data from a defined population of hospices before, during, and after federal legislation was enacted. This paper revisits the debate over the changing role of volunteers using such a longitudinal data source. Over time, as the patient population grew, aggregate levels of volunteers and professional staff increased. However, the ratios of professional staff and volunteers to patients reveal that regardless of certification status, hospices retained more professional staff per patient and fewer volunteers per patient over time. These data suggest hospices, particularly certified organizations, have transitioned from voluntary organizations to professionally staffed organizations with a strong volunteer component. The most important issue for future research is whether the observed changes have affected the quality of hospice care. [Article copies available for a fee from The Haworth Document Delivery Service: 1-800-342-9678. E-mail address: getinfo@haworthpressinc.com <Website: http://www.haworthpressinc.com>]     

Assessing Readiness for Death in Hospice Elders and Older Adults

Background: Readiness for death may affect the quality of the death experience and influence response to treatments. The psychologic vulnerability of the dying person is a major focus of palliative care. Accurate assessment of readiness for death may lead to earlier and more appropriate interventions.

Objective: The purpose of this study was to assess the psychometric properties of the revised readiness for death instrument.

Methods: Using a known groups technique and a cross-sectional study design, the revised instrument was administered to 52 elders in hospice care with a terminal diagnosis and 91 community dwelling adults without a terminal diagnosis.

Results: Instrument content validity (Kappa?=?0.96) was supported by three expert panelists who were hospice researchers. Principal components factor analysis explained 43% of the variance and partially supported the proposed four-factor structure of the revised 26-item instrument. Internal consistency was acceptable (.76). Discriminant validity was significant as assessed by an independent t-test between two contrast groups (t?=?5.98, p?=?0.000). The factor analysis, reliability testing, and qualitative analysis of items supported deletion of 2 items.

Conclusions: Results indicated that the revised instrument has sound psychometric properties but further testing with a larger sample of hospice subjects is needed to confirm the factor structure of the instrument. [Article copies available for a fee from The Haworth Document Delivery Service: 1-800-342-9678. E-mail address: getinfo@haworthpressinc.com <Website: http://www.haworthpressinc.com>]     

The Moment of Death: Is Hospice Making a Difference?

The moment of death was a compelling image and dominant concept through much of history. In recent years this term has become destabilized by technological advances and changes in clinical practice. Perhaps even more significantly, the meanings previously associated with the deathbed scene and the final breath have become increasingly marginalized. Hospice programs continue to demonstrate that enlightened and dedicated care can markedly reduce the suffering of terminally ill people and their families. The vast experience acquired by hospice programs, however, has not yet been translated into a vision of the moment of death and the deathbed scene for our times. Several reasons are identified for the limited interest and even more limited hospice-based research into the deathbed scene and the moment of death. Hospice programs could contribute much to our understanding of the final moments of life if this should ever become a priority. [Article copies available for a fee from The Haworth Document Delivery Service: 1-800-342-9678. E-mail address: getinfo@haworthpressinc.com <Website: http://www.haworthpressinc.com>]     

Reflections on the history of occupational stress in hospice/palliative care

The concept of hospice and palliative care emerged a quarter of a century ago out of recognition of the unmet needs of dying persons and the social issues of the 1960s and 1970s. The issues of the day included the sexual revolution; a questioning of social values; an increased awareness of death resulting from the murder of the Kennedy brothers and Martin Luther King and daily television exposure to deaths in the Vietnam War, feminism, consumerism, reclaiming a more humanized role in the birth process, and hence in the process of death. The history of the hospice movement and the stress experienced by staff is traced from the early developmental days through to the present. Initially there was sometimes a struggle to integrate the concepts of relief of physical symptoms with meeting the psychosocial and emotional needs of patients and families, caregivers were expected to sacrifice much of their personal life for work, emotional intensity was high and supports were developed to ease some of the stress experienced by caregivers. From the early days team stress and burnout have been issues of concern. In the 1980s issues involved establishing funding sources, dealing with the new crisis of AIDS, and dealing with the gap between the ideal and the real. In the 1990s the economic climate has escalated some of the tensions that have always existed as hospice attempts to position itself within mainstream care with diminishing fiscal resources. These are issues that confront us as we move into the next century.     

Access to Care

In the twenty years since the National Hospice Organization began, hospice has grown tremendously. However, it still only serves a small percentage of terminally ill patients. This is because access to hospice services is limited by various restrictions to care. These barriers to care include societal attitudes towards death, diversity issues, socioeconomic issues, and eligibility issues. In order to develop and serve more of the population, hospice agencies must be flexible, creative, and use ingenuity to bridge the gaps that occur for some terminally ill patients. [Article copies available for a fee from The Haworth Document Delivery Service: 1-800-342-9678. E-mail address: getinfo@haworthpressinc.com <Website: http://www.hawortlipressinc.com>]     

Effects of Massage on Pain Intensity,Analgesics and Quality of Life in Patients with Cancer Pain: A Pilot Study of a Randomized Clinical Trial Conducted Within Hospice Care Delivery

Aims: In a randomized controlled clinical trial (RCCT), we examined the effects of four massages on pain intensity, prescribed IM morphine equivalent doses (IMMSEQ), hospital admissions, and quality of life (QoL).

Methods: Of 173 referred patients, 29 (14 control, 15 massage) completed this pilot study. Subjects were 69% male and aged 63 years on average. Licensed therapists administered four, twice-weekly massages. Baseline and outcome measurements were obtained by other team members before the first and after the fourth massages.

Results: Pain intensity, pulse rate, and respiratory rate were significantly reduced immediately after the massages. At study entry, the massage group reported higher pain intensity (2.4?±?2.8 vs. 1.6?±?2.1) which decreased by 42% (1.4?±?1.5) compared to a 25% reduction in the control group (1.2?±?1.3) (p?>?.05). IMMSEQ doses were stable or decreased for eight patients in each group and increased for seven massage and six control group patients. One massage group and two control group patients were hospitalized. All initial QoL scores were higher in the massage group than in the control group, but only current QoL was statistically significant. Both groups reported improved global QoL. The control group reported slight improvement in current QoL and satisfaction with QoL whereas these two aspects of QoL declined in the massage group even though their average QoL scores were higher than the control group at the end of the study.

Conclusions: We demonstrated feasibility of conducting an RCCT in which we systematically implemented massage as a nonpharmacologic comfort therapy along with our usual hospice care. The massage intervention produced immediate relaxation and pain relief effects. A power analysis based on trends in the longer-term effects indicate that a study with 80 subjects per group is likely to detect statistically significant effects of usual hospice care with twice-weekly massage therapy sessions on pain intensity, analgesic dosages, and quality of life. Lessons we learned from conducting this pilot study are being used to improve documentation of our hospice program outcomes and to plan a definitive study. [Article copies available for a fee from The Haworth Document Delivery Service: 1-800-342-9678. E-mail address: getinfo@haworthpressinc.com <Website: http://www.haworthpressinc.com>]     

End of Life Care and Decision Making: How Far We Have Come,How Far We Have to Go

While enormous progress has been made in improving the quality of care and the decision-making process for patients at the end of life, as a society we still have far to go to ensure that dying patients and their families have a comfortable and dignified death. In particular, reexamination and reconfiguration of our current decision framework is essential as our elderly population with chronic disease and slowly fatal conditions expands. With less certain disease paths and more complex and ambiguous choices, the growth of this geriatric population challenges us to develop a broader conceptualization of end of life care planning, so that end of life considerations are integrated into a larger anticipatory framework addressing options and needs as patients gradually decline. Within this framework hospice becomes a natural, integrated option along a continuum of care planning, rather than an abrupt alternative at a late stage of illness. End of life care planning must positively anticipate a robust array of needs and concerns well beyond the dramatic decisions to withhold or withdraw life-prolonging technologies usually found in advance directives. To embrace this broader framework it is critical that primary care physicians as well as disease specialists receive training in fundamental aspects of both geriatric and palliative care. Professionals from both of these disciplines must share expertise with each other, and should collaborate in advocacy efforts to effectuate changes in the clinical, policy and legislative arenas. [Article copies available for a fee from The Haworth Document Delivery Service: 1-800-342-9678. E-mail address: getinfo@haworthpressinc.com <Website: http://www.haworthpressinc.com>]     

Facing Death: Images,Insights, and Interventions. By Sandra L. Bertman,PhD

The establishment of hospices in the U.S. has resulted in an increase in bereavement services available to clients experiencing loss. Many of these services, such as educational and peer support groups, are provided without screening or assessment of risk for complicated bereavement in the individuals who utilize them. While acceptance of uncomplicated bereavement is important, assessment for complicated bereavement is also important to ensure that appropriate services are offered to those at risk for problematic adjustment. This article reviews the literature on risk criteria for complicated bereavement and proposes a method both for assessing risk and matching service to level of need, based on these criteria. [Article copies available for a fee from The Haworth Document Delivery Service: 1-800-342-9678. E-mail address: getinfo@haworthpressinc.com http://www.haworthpressinc.com>]