The routinization of hospice: Charisma and bureaucratization

In 25 years the number of hospices in Britain has multiplied from under 15 in 1965 to over 430 in 1991. During this period, often working out with the mainstream health system, the hospices actively sought to transform terminal care. More recently a process of diversification and legitimation has meant that hospices have become increasingly subject to mainstream influence. Using Weber's concept of charisma we examine the development of the hospice movement during this period of expansion. We suggest there are a number of factors leading to the routinization of hospice care including the ways in which it was sponsored and developed at the local level, and pressures toward bureaucratization and professionalization. We make links with recent developments in the health services. Finally we consider whether it is possible for the hospice movement to sustain its founding ideals.     

Job satisfaction among hospice workers: what managers need to know

The purpose of this study was to investigate the perception of job satisfaction among hospice interdisciplinary team members, which included social workers, nurses, spiritual care providers, and home health aides. Interdisciplinary team members (n = 72) from 4 hospice organizations in the Midwest participated in the study. Results of this study show that job satisfaction as defined by hospice workers includes having task significance, supervisory support, integration, distributive justice, positive affectivity, autonomy, routinization, no role overload, and high levels of work motivation. These same workers also stated that (1) working with patients and families and carrying out the hospice philosophy (task significance), (2) being comfortable with their level of knowledge and skills (competence), and (3) having good relationships with team members (integration) play a significant role in their degree of satisfaction on the job. These results have implications for managers in hospice organizations. Specifically, managers in health care organizations like hospices need to be apprised of what factors result in job satisfaction among employees.     

An ethnography of clinic "noise" in a community-based, promotora-centered mental health intervention

Community-based health interventions have emerged as a growing focus for anthropological research. The application of ethnographic approaches in clinical practice settings reveals that community-based interventions must grapple with "noise," or unanticipated factors such as patients' own perceptions of illness and treatment, primary care providers' non-adherence to guidelines-based treatment, the social dynamics of the clinic site itself, and incomplete understanding and acceptance of an intervention by a clinic's staff members. Such noise can influence the implementation and quality of treatment. Thus, identifying clinic-based noise is critical in assessments of fidelity to intervention protocols as well as outcomes of community-based interventions. This paper highlights findings from an evaluation of a mental health intervention focusing on the role of promotoras (briefly trained, non-professional community health workers) as mental health practitioners in two urban New Mexico, USA, community health centers. Our research identified three areas of clinic-based noise: the clinics' physical ability to "absorb" the intervention, the challenges of co-worker instability and interpersonal relationships, and balancing extra workplace demands. The findings demonstrate the value of ethnographic approaches in community-based intervention research.     

A generative response to palliative service capacity in Canada

PURPOSE: This paper situates a large-scale learning and service development capacity-building initiative for hospice palliative care services within the current Canadian policy context for use by international readers. DESIGN/METHODOLOGY/APPROACH: In 2000 a national initiative using action research as its design was crafted to support continuing professional development and knowledge management in primary-health care environments. FINDINGS: The Canadian health policy context is complex and requires innovative solutions to achieve desired changes in response to emerging population health demands for quality end-of-life care. Employment of educational and social science constructs, including complexity theory, communities of practice, transformative learning theory, and workplace learning methods, has proven helpful in supporting the creation of national capacity for hospice palliative care. RESEARCH LIMITATIONS/IMPLICATIONS: There is a significant contribution for social scientists to make in aiding a better understanding of the complexity in health systems. At the same time, an aging population in industrial countries demands more active engagement of legal and bioethical scholars in a range of emerging policy and legislative questions about quality end-of-life care. Educational research is also required to understand better and reform curricula to prepare an emerging generation of health science practitioners for the demands of an aging population. PRACTICAL IMPLICATIONS: Changing health service delivery environments demand rethinking of the knowledge and skills leaders require to influence desired change. A broader understanding of where and how learning takes place is essential for enhancing the quality of patient care. ORIGINALITY/VALUE: The Pallium Project represents a generative response to facilitating learning and building longer-term system capacity. The journey of project development to date illustrates some important lessons that can be adopted from hospice palliative care to inform other primary-health care initiatives, including, potentially, mental health, cardiology, diabetes, geriatrics, where productive change can result from productively linking specialists and primary-care colleagues.     

Contradictions in the development of new hospices: a case study.

Despite a decade of concern about the 'mushrooming' of new hospice developments within the British Isles, we remain remarkably ignorant about the processes which lead to the initiation of new hospice projects and the factors which affect their progress. Three inter-related issues appear important: (1) policy and resource implications; (2) changing models of hospice care; (3) 'community' factors. This paper explores the interconnections between these, using a case study approach and describes in detail the efforts of a single local voluntary group to establish a programme of community care for dying people. It shows that: (1) local 'communities' are likely to make continued demands for hospice type care, despite official scepticism about proliferation; but also that these communities should not be seen as homogeneous in their aspirations and demands; (2) new models of community care will interact with wider policy changes in the NHS and Social Services to raise questions about how terminal care services can be further developed; (3) shifts away from traditional in-patient models of care are likely to high-light divisions between 'lay' and 'professional' groups in their perceptions of how services can be delivered.     

The needs and supportive networks of the dying: an assessment instrument and mapping procedure for hospice patients.

If institutional systems that provide end-of-life care are to survive the demands of managed care, they will need to tie together methods of assessing the needs of the dying, leading to a new understanding of the functioning of a patient's existing helping networks. This paper presents the preliminary findings of a research project conducted at a Midwest hospice. The study utilized a cross sectional correlational survey of patients' needs via the Early Risk and Resiliency Inventory (ERRI), while mapping their helping networks with a Circles of Care Ecomap. It addressed the question, "What is the relationship between the needs of the dying and the formal and informal support provided?" Study findings supported the contention that higher need patients utilized the more expensive institutional services rather than relying on available natural networks; and statistical analysis of the study instrument suggested the creation of a new conceptual domain of psychospiritual need.     

The health impact of health care on families: a matched cohort study of hospice use by decedents and mortality outcomes in surviving,widowed spouses

Alternative ways of caring for seriously ill patients might have implications not only for patients' own outcomes, but also, indirectly, for the health outcomes of their family members. Clinical observation suggests that patients who die "good deaths" may impose less stress on their spouses. Consequently, we sought to assess whether hospice use by a decedent is associated with decreased risk of death in surviving, bereaved spouses. We conducted a matched retrospective cohort study involving a population-based sample of 195,553 elderly couples in the USA. A total of 30,838 couples where the decedent used hospice care were matched using the propensity score method to 30,838 couples where the decedent did not use hospice care. Our principal outcome of interest was the duration of survival of bereaved widow/ers. After adjustment for other measured variables, 5.4% of bereaved wives died by 18 months after the death of their husband when their deceased husband did not use hospice and 4.9% died when their deceased husband did use hospice, yielding an odds ratio (OR) of 0.92 (95% CI: 0.84-0.99) in favor of hospice use. Similarly, whereas 13.7% of bereaved husbands died by 18 months when their deceased wife did not use hospice, 13.2% died when their deceased wife did use hospice, yielding an OR of 0.95 (95% CI: 0.84-1.06) in favor of hospice use. Our findings suggest a possible beneficial impact of hospice--as a particularly supportive type of end-of-life care--on the spouses of patients who succumb to their disease. Hospice care might attenuate the ordinarily increased mortality associated with becoming widowed. This effect is present in both men and women, but it is statistically significant and possibly larger in bereaved wives. The size of this effect is comparable to the reductions in the risk of death seen in a variety of other modifiable risk factors in women. Health care may have positive, group-level health "externalities": it may affect the health not only of patients but also of patients' family members.     

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 U.S. hospice movement: issues in development.

A grass-roots hospice care movement is underway in the United States modeled after recently popularized British hospice programs. Hospice care is intended to help the terminally ill maintain a personally acceptable quality of life until death. Attention should be given to ensuring the future viability of this service option by allowing for experimentation with and adaptation of existing models, and by integrating it with the overall health care system. Issues to be considered in integrating hospice care include utilization of existing resources, regional planning, standards and licensure, and reimbursement opportunities. Although hospice care may not have an immediate cost savings impact on the health care system, it could develop this capacity in the future. Such impact would not only assure a stable financial base for hospice care but would also affect bed use generally. Continuing dialogue among providers, consumers, and policy makers of various backgrounds is necessary to the effective and appropriate development of hospice care in the U.S.     

Anesthesia practitioner involvement, invasive treatments, and need in hospice pain management: a survey of patient care coordinators.

Pain management is one of the major concerns for the terminal patient. The hospice care team is a highly trained group of health care providers in the area of symptom control, including pain management, for the dying patient. Anesthesia providers also specialize in pain control. The purposes of this study were to survey hospice patient care coordinators to gain an understanding of anesthesia practitioners' involvement with hospice patients, hospice patients' access to anesthesia pain management services, and hospice patient care coordinators' attitudes toward the necessity of anesthesia pain management services for the hospice community. A questionnaire was developed to assess these issues. In general, the findings reflected minimal anesthesia practitioner involvement in the hospice community. Fifty-two percent reported that patients could benefit from invasive treatments offered by anesthesia practitioners. Forty percent responded that more patients could be considered as candidates for invasive pain management techniques if procedures were performed in the patient's home or hospice. Access to anesthesia pain management services was limited by distance to pain clinics and anesthesia practitioners, and more anesthesia pain management services were needed for hospice patients in smaller communities. Cost of anesthesia pain management was frequently proposed as a prohibitive factor.     

Needs and experiences of non-English-speaking hospice patients and families in an English-speaking country

There is increasing evidence that, in practice, hospice care is predominantly accessed by white, middle-class patients, who live in stable home environments with available caregivers and other supports. The present challenge for researchers, administrators, and clinicians is to identify populations of terminally ill patients most in need of hospice care and to direct services to these patients. As a contribution to the development of this area, this paper presents the findings from a recent Australian hospice study that examines the needs and experiences of families from non-English-speaking backgrounds. The findings indicate that it is as important to focus on similarities as it is to highlight differences.     

‘Where do I go from here’? A cultural perspective on challenges to the use of hospice services

Do hospice services as shaped by a western perspective adequately fulfil the needs of persons from non‐Western cultures? Based on a Western view of palliative care, the vision outlined in the New Zealand Palliative Care Strategy (2001) is to deliver palliative care services, including hospice services, to all patients and their families requiring them in the context of an increasingly pluralistic and multicultural society. It is predicted that over the next two decades the proportion of people identifying as Māori, Pacific and Asian will dramatically increase within New Zealand. Ministry of Health information provided through a GAP analysis identified hospices as facing access‐to‐care pressures for Māori, Pacific and Asian patients. It is therefore critical to identify the challenges to hospice service access for Māori, Asian and Pacific patients. This project involved qualitative interviews with 37 cancer patients (Māori, Pacific and Asian self‐identified ethnicities), whānau/family and bereaved whanua/family, as well as 15 health professionals (e.g. referring GPs, oncologists, allied health professionals) within one District Health Board. Patients and their families included both those who utilised hospice services, as well as those non‐users of hospice services identified by a health professional as having palliative care needs. Challenges to hospice service utilisation reported in the findings include a lack of awareness in the communities of available services, as well as continuing misconceptions concerning the nature of hospice services. Language barriers were particularly reported for Asian patients and their families. Issues concerning the ethnic representativeness of the hospice services staff were raised. The findings highlight the importance of patient and family knowledge of hospice care for utilisation of services. This information can be used for future planning to enable hospices to both provide high quality evidence based palliative care services for patients and families and provide consultative services to primary healthcare providers in the community.     

Spiritual pain: a comparison of findings from survivors and hospice patients

The article presents comparative research findings on the notion of "spiritual pain." The findings from interviews with hospice patients affirm the previously published, preliminary conceptualization of spiritual pain from interviews with survivors. However, while the survivor findings highlight the potential for spiritual pain associated with life after high-tech curative treatment, the hospice patient data emphasize the protectiveness of the hospice experience for deflecting the possibility of spiritual pain. It is anticipated the discussion of comparative findings will affirm the importance of researching this "ignored dimension" and, in so doing, will enrich our understanding of the spiritual dimension of healthcare. The work is part of a program presently developing a language of spirituality through research.     

Hospice: social work's response to a new form of social caring

Social work's response to hospice, as a new form of social caring, is portrayed by a social work process paradigm, conceptualized from the practice and research experiences of the authors. Guidelines are suggested for working with patients, families, care providers, and other concerned persons through the four phases of hospice care. As changes occur in the patient and the hospice settings, the participants join together to bring about a satisfactory fit between the person needing care and the environment. By anticipating the needs and reactions of the terminally ill patient to each transition in the care process, the social worker assists in orchestrating proactive interventions through the continuum of hospice care. Future research studies are recommended for determining what difference social work actions make toward ensuring a "safe passage."     

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.     

On euthanasia, resistance, and redemption: the moralities and politics of a hospice

Euthanasia/assisted dying, the desire to hasten death, and religious supportive care at the end of life are controversial issues that have been heavily debated within the academic and medical communities. Little research has been done on hospice patients' views, despite hospices being political spaces, espousing a range of perspectives on assisted dying, religiosity, and "good deaths." In this article I document the presence, articulation, and significance of these issues as perceived and experienced by 20 hospice inpatients in the last 4 weeks of their lives. Key themes to emerge included polarization in desire for hastened death and assisted dying in the hospice; the hospice as a morally bound space situated within particular notions of "dying well"; and the divisive character of religion as part of formalized hospice care. Theoretically, the participants' perspectives on euthanasia/assisted dying and religiosity in the hospice provide a means of unpacking and revealing the moral economy of modern dying practices and the institutional governance and production of "timely deaths."     

Hospice social work: a search for identity.

This article describes social work's contribution to hospice philosophy and practice, calls attention to the lack of a distinct social work function on hospice teams, and examines various ways to resolve the problem of social work identity in hospice care. Insights from recent peer discussions of hospice social workers tend to support Kulys and Davis's (1986) earlier findings that psychosocial care is provided regularly by hospice team members other than social workers. Options for strengthening the hospice social work role are discussed, including the development of more specific therapeutic techniques and social work leadership in conducting applied research. The importance of maintaining a value-based, critical perspective is stressed.     

The primary care clinical nurse specialist. Director of a hospice program?

In summary, hospice is a form of primary health care that developed along with the nurse practitioner-clinical specialist movement in the 1970s as a response to fragmented, impersonal health care. Both movements experienced similar steps of role development and stand today at the beginning of a new era with financial reimbursement possibilities. The role of the primary care clinical nurse specialist as a leader in the distribution of that care is very compatible with the hospice team concept. Utilization of the clinical specialist as director would keep hospice within nursing's field of health care, enhance the caring image of hospice, and maintain the focus on the patient's need in dealing with death and dying.     

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.     

Introducing hospice into allied health curricula: a challenge for educators

Including hospice, as a concept of care, into existing allied health curricula is very important. Hospice should be integrated into the curricula of allied health programs. In addition to offering courses on hospice care, there are many novel ideas for exposing students to aspects of hospice care including grand rounds, self-instruction packets, journal clubs, honors program presentations, monthly forums, and clerkships. Federal funding is important to support and develop hospice training as well as other resources.