‘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.     

AIDS and hospice

Which AIDS patients should be admitted to hospice programs? Many health care professionals feel that any anti-viral drug or treatment directed against the opportunistic infections characteristic of AIDS to be incompatible with hospice philosophy. Others argue that inclusion of AIDS patients blurs the distinction between hospice and community service programs. We argue that achieving consensus on this issue is best served by focusing on the defining characteristic of hospice programs--the care of the dying. Consensus is not served by dwelling on the specific palliative or supportive measures used to achieve the hospice goal. We suggest a framework by which AIDS patients may be accommodated in existing hospice programs while maintaining hospice program integrity. It is further suggested that these may be used for the consideration of any patient for hospice care.     

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.     

Difficulties in navigating the intersection of generalist and specialist palliative care services: A cross-sectional study of bereaved family's experiences of care at home in New Zealand

A generalist–specialist model of palliative care is well established as a framework for the provision of community care in resource-rich countries. However, evidence is lacking regarding how the model is experienced by family carers and the extent to which access to both generalist and specialist palliative care is equitable. A cross-sectional postal survey was undertaken to explore bereaved family's experiences of generalist palliative care and its intersection with hospice services in the last 3 months of life. A modified version of the Views of Informal Carers—Evaluation of Services survey was sent to 4,778 bereaved family. Data were collected between February 2017 and October 2018. Chi-square was utilised to identify factors that impacted on experiences of generalist palliative care; analysis of free text data comprising 45,823 words was undertaken using a directed content analysis approach. Eight hundred and twenty-six questionnaires were returned (response rate = 21%). Seventy per cent of people (n = 579) spent some time at home in the last 3 months prior to death. People who received support from hospice were more likely to receive support from multiple other services. Those who received no community services were less likely to feel supported by their general practitioner, less likely to spend the last 2 days of life or die at home. Feeling supported had a strong association with services working well together, being involved in decision-making and being aware of the poor prognosis. The provision of palliative care is complicated by a lack of integration with specialist palliative care and may be the basis of continuing inequities in the provision of community care at the end of life. The assumption at a policy level that “generalists” are willing and able to play a key role in palliative care provision needs to be further challenged.     

What role do Death Doulas play in end‐of‐life care? A systematic review

Current health and social care systems do not always meet the needs of the dying in our communities. As a result, patients and families are choosing to place their trust in those who can advocate for them or fill the gaps in care. Birth Doulas have been working with women during pregnancy and after birth for many years, and we are now seeing a new role, that of a Death Doula emerging in the end‐of‐life care space. How Death Doulas work within health and social care systems is not understood and we conducted a systematic review to explore the published literature to explore the role and potential implications for models of care delivery. Following the PRISMA recommendations, we searched the literature in January 2018 via bibliographic databases and the grey literature without search date parameters to capture all published literature. We looked for articles that describe the role/work of a death doula or a death midwife in the context of end‐of‐life care, or death and dying. Our search retrieved 162 unique records of which five papers were included. We analysed the papers in relation to relationship to health service, funding source, number and demand for services, training, licensing and ongoing support, and tasks undertaken. Death Doulas are working with people at the end of life in varied roles that are still little understood, and can be described as similar to that of “an eldest daughter” or to a role that has similarities to specialist palliative care nurses. Death doulas may represent a new direction for personalised care directly controlled by the dying person, an adjunct to existing services, or an unregulated form of care provision without governing oversight.     

Providers’ perceptions of Aboriginal palliative care in British Columbia’s rural interior

Aboriginal Canadians experience a disproportionate burden of ill‐health and have endured a history of racism in accessing and using health care. Meanwhile, this population is rapidly growing, resulting in an urgent need to facilitate better quality of living and dying in many ways, including through enhancing (cultural) access to palliative care. In this article, we report the findings from a qualitative case study undertaken in rural British Columbia, Canada through exploring the perceptions of Aboriginal palliative care in a region identified as lacking in formal palliative care services and having only a limited Aboriginal population. Using interview data collected from 31 formal and informal palliative care providers (May–September 2008), we thematically explore not only the existing challenges and contradictions associated with the prioritisation and provision of Aboriginal palliative care in the region in terms of (in)visibility but also identify the elements necessary to enhance such care in the future. The implications for service providers in rural regions are such that consideration of the presence of small, and not always ‘visible’, populations is necessary; while rural care providers are known for their resilience and resourcefulness, increased opportunities for meaningful two‐way knowledge exchange with peers and consultation with experts cannot be overlooked. Doing so will serve to enhance culturally accessible palliative care in the region in general and for Aboriginal peoples specifically. This analysis thus contributes to a substantial gap in the palliative care literature concerning service providers’ perceptions surrounding Aboriginal palliative care as well as Aboriginal peoples’ experiences with receiving such care. Given the growing Aboriginal population and continued health inequities, this study serves to not only increase awareness but also create better living and dying conditions in small but incremental ways.     

The Harry R. Horvitz Center for Palliative Medicine (1987-1999): development of a novel comprehensive integrated program

The Cleveland Clinic is a large multispecialty group practice. The need for a palliative care program was identified and the program started in 1987. A key concept has been that the existing structure of hospice care as defined by Medicare is insufficient to address the needs of patients with incurable disease. The field of palliative medicine implies physician expertise in several key areas: (1) communication; (2) decision-making; (3) management of complications; (4) symptom control; (5) care of the dying; and (6) psychosocial care. The development of the program (the first in the United States) since 1987 has put in place the following major services, listed consecutively: (1) hospital consultation service; (2) outpatient clinics; (3) acute care inpatient service; (4) hospice and home care service; (5) acute-care palliative medicine inpatient unit; and (6) hospice inpatient facility. Program development has meant that a new program has been introduced approximately every 18 months since the start of the program. This has considerable implications for staffing, the management of change, and competition for scarce resources within a contracting health care budget. The staffing of the program has focused on developing specialized attending physicians using a multidisciplinary approach dedicated to enhancing the role of nursing in the field. The major budgeted areas are (1) the acute-care palliative medicine unit, and (2) the hospice and home care service. Specific commitment has been made to research and education because of the desire to develop an intellectual basis for the practice of palliative medicine. This requires structured activities in both areas with a systematic approach to research and education. The complexity of developing a service should not be underestimated. There has been consistent support for the program by senior leadership within the Cleveland Clinic Foundation, including the cancer center. The major lessons learned during program development have been: (1) to focus on quality of patient care; (2) to commit to academic endeavor in research and education; (3) to secure institutional commitment to program development; (4) to establish a positive, proactive, businesslike approach; (5) to defend budget and personnel, albeit within a difficult time in health care; and (6) to commit to success, i.e., never promise anything on which you do not deliver. The future development of post-acute-care services serving predominantly the chronically ill elderly population suggest an expanded administrative and conceptual role for the future development of palliative medicine to help serve the needs of the aging population in the United States.     

Increased access to palliative care and hospice services: opportunities to improve value in health care

Context: A small proportion of patients with serious illness or multiple chronic conditions account for the majority of health care spending. Despite the high cost, evidence demonstrates that these patients receive health care of inadequate quality, characterized by fragmentation, overuse, medical errors, and poor quality of life. Methods: This article examines data demonstrating the impact of the U.S. health care system on clinical care outcomes and costs for the sickest and most vulnerable patients. It also defines palliative care and hospice, synthesizes studies of the outcomes of palliative care and hospice services, reviews variables predicting access to palliative care and hospice services, and identifies those policy priorities necessary to strengthen access to high‐quality palliative care. Findings: Palliative care and hospice services improve patient‐centered outcomes such as pain, depression, and other symptoms; patient and family satisfaction; and the receipt of care in the place that the patient chooses. Some data suggest that, compared with the usual care, palliative care prolongs life. By helping patients get the care they need to avoid unnecessary emergency department and hospital stays and shifting the locus of care to the home or community, palliative care and hospice reduce health care spending for America's sickest and most costly patient populations. Conclusions: Policies focused on enhancing the palliative care workforce, investing in the field's science base, and increasing the availability of services in U.S. hospitals and nursing homes are needed to ensure equitable access to optimal care for seriously ill patients and those with multiple chronic conditions.     

Good enough death: autonomy and choice in Australian palliative care

This paper draws upon Australian fieldwork to trace the changing notions of a good death held by hospice and palliative care practitioners. Palliative care practitioners search for an ideology to inform their practice within the context of a complex society for which there is no one good death. Social demographics, the multicultural nature of society and institutional constraints frame the experience of dying in complex ways, while contemporary social responses to dying reflect the uncertainties held by many Australians. Despite the fragmentation evident within contemporary Australian society, the hospice movement in Australia and in other Western contexts has sought to reintroduce a ritual for dying. The good death ideology of the original hospice movement proposed a manner of dying in which open communication and acceptance of death were actively encouraged. The hospice model of a good death, however, has become increasingly inappropriate in the current climate of patient autonomy and consumer choice. The practice of palliative care, a holistic form of care for dying people, which follows the individualistic ethic of choice, has emerged from and replaced the original hospice movement. Consequently, the good death of the original hospice movement has been abandoned in favour of a philosophy of a 'good enough' death. However, what may appear a compromise informed by ethical practice masks a return to routine medical practices and a hierarchy of care which prioritises the physical management of symptoms. It appears that while palliative care practitioners may often fail in their facilitation of a good death for their patients, they can be proactive in alleviating their patients' pain and physical discomfort.     

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".     

Health-promoting palliative care: A practice example

Although the development and spread of health-promoting palliative care is well known in Australia, as a form of community support facilitated by palliative care services, little is known about its actual practice outside that country. This article summarizes the main rationale and concepts of health-promoting palliative care, lists some of the key policy and academic writing on the subject, and provides one example of its practice. Health-promoting palliative care translates hospice ideals of ‘whole person care’ into broader public health language and practices related to prevention, harm reduction, support, education, and community action. How these ideas express themselves in partnerships between palliative care and the wider community to enhance the quality of life of individuals and communities living with dying, death and loss is described from an Australian example.     

Building community capacity for end of life: an investigation of community capacity and its implications for health-promoting palliative care in the Australian Capital Territory

This study identified and examined community-based activities around death, dying and end-of-life care which might reflect a health-promoting palliative care (HPPC) philosophy. This approach is argued to restore community ownership of, and agency in, dying and death through the building of community capacity. However, the enactment of the HPPC approach has not been extensively examined in Australia. Current understandings of community capacity-building relating to end of life are orientated toward service provision. A qualitative interpretive approach was used to engage with local community groups in the Australian Capital Territory with an interest in death, dying and end-of-life care. Data were collected from ten in-depth, semi-structured interviews and thematically analysed. The themes of Practical Support, Respect and Responsiveness and Connection and Empowerment were identified, reflecting community activities initiated in response to the experience of life-limiting illness. Building community capacity offers to restore community agency in end-of-life concerns, while potentially enhancing health service provision through collaborative partnerships. This study indicates an existing community capacity, demonstrated by activities that promote socialisation, peer support and normalisation of death and dying. However, as these activities occur primarily in response to illness, proactive and preparatory interventions in HPPC are a priority.     

Providing a children's palliative care service in the community through fixed-term grants: the staff perspective

BACKGROUND: Children's palliative care services have recently been awarded fixed-term grants, aimed at improving the provision of care for children with life-limiting conditions in the community. We report findings of a qualitative study to investigate the experience of a cohort of community children's nurses from teams involved in setting up or extending community-based children's palliative care services. The purpose of the study was to identify factors that affect service delivery, from the staff perspective, and to suggest ways of promoting their sustainable development. METHODS: Semi-structured telephone interviews were conducted with 21 nurses from 12 different teams providing palliative care for children at home and in hospices. Participants were questioned about the services they provided and their own roles in that provision. NVIVO qualitative data analysis software was used to explore themes arising from the transcribed recorded interviews. FINDINGS: Key findings were the importance of physical location in facilitating multidisciplinary communication, the importance of defining role boundaries between existing and new providers of children's palliative care, and the potentially detrimental impact of insecure funding on referral patterns and recruitment to posts. Staff named the opportunity to offer direct 'hands-on' care to families, access to work-based support and networking opportunities as important factors in helping them cope with the stresses involved in managing finite resources and the emotional challenges of their work. CONCLUSIONS: The maintenance of a mixed caseload with a significant proportion of direct care, provision of ongoing support and clearly defined roles are recommended as means of bolstering the ability of staff to develop their services. The deliberate locating of services to enhance communication between staff and guidance on the preparation of funding applications may further contribute to the sustainability of these services.     

Is occupation missing from occupational therapy in palliative care?

Background/aim: The role of occupational therapists in palliative care is largely undocumented in Western Australia (WA). Little is known about the services occupational therapists provide or the needs of people who are dying and their carers in relation to these services. The aims of this study were as follows. First, to determine the number of occupational therapists employed and the range of services they provide in palliative care in WA. Second, with particular reference to self care, leisure, productive roles and occupations, to explore the daily experiences of people who were dying as well as their primary carers to determine the services that might be offered by occupational therapy to this population. Methods: Semi‐structured interviews were used to gather information from carers (n = 10 metro, n = 4 rural) and occupational therapists (n = 13 metro, n = 5 rural). Data were analysed qualitatively using grounded theory to develop categories. Themes were defined using the constant comparison method. Results: Four themes emerged that impacted people who were dying and their carers. These were; ongoing disengagement from usual activities with resultant occupational deprivation; disempowerment of both people who are dying and their carers within palliative care services; ‘occupation’ not being addressed adequately in palliative care and occupational therapists experience frustration with limited opportunities to contribute to the care of people who are dying. Conclusions: This paper highlights gaps in service provision in WA to people who are dying and their carers. It provides direction for occupational therapists to offer an occupation‐focussed approach to the care of this vulnerable group.     

Caring for children with specialized health care needs in the community: the challenges for primary care

People needing intensive and specialized health care are being cared for now in community settings; this has implications for both primary health care professionals and family carers. This paper draws on research investigating how services can be developed to support families caring for children with complex health care needs, to consider the challenges facing professionals working in the primary health care sector. Interviews conducted with parents, professionals and those who fund and commission specialized health services reveal particular problems in relation to the purchasing and provision of short-term care and specialist equipment/therapies in the community. These problems need to be addressed if people with specialized needs are to be cared for outside hospitals. The new Primary Care Groups (PCGs) will have the opportunity to enhance the provision of these services. Primary care professionals will also need to work in partnership with other sectors of the health service and with local authority services, at both strategic and operational levels, to develop integrated and coordinated services for this growing group of people.     

A protocol for determining differences in consistency and depth of palliative care service provision across community sites

Numerous accounts document the difficulty in obtaining accurate data regarding the extent and composition of palliative care services. Compounding the problem is the lack of standardisation regarding categorisation and reporting across jurisdictions. In this study, we gathered both quantitative and spatial – or geographical – data to develop a composite picture that captures the extent, composition and depth of palliative care in the Canadian province of British Columbia (BC). The province is intensely urban in the southwest and is rural or remote in most of the remainder. For this study, we conducted a detailed telephone survey of all palliative care home care teams and facilities hosting designated beds in BC. We used geographic information systems to geocode locations of all hospice and hospital facilities. In‐home care data was obtained individually from each of five BC regional health authorities. In addition, we purchased accurate road travel time data to determine service areas around palliative facilities and to determine populations outside of a 1‐hour travel time to a facility. With this data, we were able to calculate three critical metrics: (i) the population served within 1 hour of palliative care facilities – and more critically those not served; (ii) a matrix that determines access to in‐home palliative care measured by both diversity of professionals as well as population served per palliative team member; and (iii) a ranking of palliative care services across the province based on physical accessibility as well as the extent of in‐home care. In combination, these metrics provide the basis for identifying areas of vulnerability with respect to not meeting potential palliative care need. In addition, the ranking provides a basis for rural/urban comparisons. Finally, the protocol introduced can be used in other areas and provides a means of comparing palliative care service provision amongst multiple jurisdictions.     

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

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

连续—碎片—整合——我国农村三级医疗卫生网络服务提供模式的历史演变及启示

几十年来,经济社会的巨大变革所引起的政府卫生决策意识改变导致我国农村卫生服务网络提供连续性卫生服务呈现明显的波动性：计划经济时代,＂分级分工,就近就医＂的服务模式曾是我国连续性服务的理念萌芽和初始实践;改革开放以来则形成了＂自由择医,碎片化提供＂的非连续服务模式;2009年公共卫生服务均等化实施后则呈现＂基层就医,连续综合＂的整合服务模式的发展趋势。上述三个阶段服务提供模式的波动特征背后隐含着不同时期政府意识形态对卫生服务治理的深刻影响,充分证明了基本医疗保健服务具有明显的政治脆弱性。这种历史演化特征的政策动因为我国以及转型国家维持卫生服务网络延续连续性服务模式提供了诸多政策经验和启示：重视基本保健策略,建立完整的基层卫生体系框架和系统的、整合的运行机制以及重视以人为中心的服务提供理念等。     

Retention of Clients in Service Under Two Models of Home Health Care for HIV/AIDS

ABSTRACT

Objective: To determine if a Transprofessional, care-management approach (experimental group) produces different patterns of retention in home treatment as compared to a Traditional treatment approach (control group). The care-management approach utilizes an interdisciplinary mix of allied health professionals who adhere to a service delivery protocol based on active medical, surgical treatment (curative services) as well as on pain, symptoms, and emotional care (palliative services). Initially, the Transprofessional Model should lead to a greater retention rate in the program as patients bond to blended care managers, but in later stages clients needing hospice should be moved off-services resulting in lower retention rates in the medical-surgical home care venue.

Data Sources and Study Setting: Data were collected from 549 AIDS patients admitted for medical/surgical home-care services to the Visiting Nurse Association of Los Angeles (VNA-LA). Demographic and disease-specific data were collected from admitting records; service-utilization data were collected from the VNA-LA's computerized data system.

Study Design: Upon admission for home-care services, patients were randomly assigned to an experimental (Transprofessional) or control (Traditional) treatment group. Service levels were comparable.

Primary Finding: In the earliest stages, Transprofessional patients tend to be more likely to stay in treatment, probably due to the greater bonding to the program. After about one year, the Transprofessional patients are more likely to leave the program as they are transitioned into hospice care.

Conclusions: An integrated model of service delivery, which is based on interdisciplinary care-management and blended modalities of service, provides a quality of life enhancing and a cost-effective method in the provision of home-care services for terminally ill AIDS patients.