General practice and specialist palliative care teams: an exploration of their working relationship from the perspective of clinical staff working in New Zealand

With the future focus on palliative and end‐of‐life care provision in the community, the role of the general practice team and their relationship with specialist palliative care providers is key to responding effectively to the projected increase in palliative care need. Studies have highlighted the potential to improve co‐ordination and minimise fragmentation of care for people living with palliative care need through a partnership between generalist services and specialist palliative care. However, to date, the exact nature of this partnership approach has not been well defined and debate exists about how to make such partnerships work successfully. The aim of this study was to explore how general practice and specialist palliative care team (SPCT) members view their relationship in terms of partnership working. Five focus group discussions with general practices and SPCT members (n = 35) were conducted in 2012 in two different regions of New Zealand and analysed using a general inductive approach. The findings indicate that participants’ understanding of partnership working was informed by their identity as a generalist or specialist, their existing rules of engagement and the approach they took towards sustaining the partnership. Considerable commitment to partnership working was shown by all participating teams. However, their working relationship was based primarily on trust and personal liaison, with limited formal systems in place to enable partnership working. Tensions between the cultures of ‘generalism’ and ‘specialism’ also provided challenges for those endeavouring to meet palliative care need collaboratively in the community. Further research is required to better understand the factors associated with successful partnership working between general practices and specialist palliative care in order to develop robust strategies to support a more sustainable model of community palliative care.     

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.     

Independent hospice care in the community: two case studies

Following its remarkable success over the past 25 years the hospice movement is now at a watershed in its development. The growing legitimacy of palliative care as a health care specialty has coincided with the development of the internal market within public sector services, and the promotion of community care. The impact of these changes is now being felt by the hospice movement and may well result in radically new forms of service provision. The focus of this paper is on the future direction of the hospices. We argue, that in the present policy context the main priority must be palliative care in the community, using two case studies of innovative services to illustrate how this might be achieved. We also explore a variety of factors which may constrain the development of community care for dying people. These include the diminishing experience of families and primary health care workers in managing death and dying and the often strongly held belief that hospice care must be in-patient care. New community services may also face difficulties both in finding a market niche which complements rather than supersedes existing provision, and in securing service contracts where provision cuts across the health and social care divide. These issues are explored through an examination of the models of care developed by the two hospice groups, their integration within existing networks of provision, and their relationship with purchasing authorities.     

An analysis of calls to an out-of-hours palliative care advice line

An advice line was set up by a specialist palliative care hospice to improve the provision of out-of-hours palliative care to primary care teams, i.e. from 17.00 to 09.00 h during the week and at weekends and bank holidays. A senior member of nursing staff or medical staff answered all calls. During the first year of operation, 98 calls were received. The majority of callers were GPs (55%) and community nurses (34%). The advice requested was largely related to management of pain and the use of opiates, e.g. breakthrough dose of opiates and conversion of drugs to syringe drivers. Recommendations from this study include the provision of continuing education on management of terminally ill patients, and improved communication between primary care teams, providers of out-of-hours primary care and specialist palliative care teams.     

The magnitude,share and determinants of unpaid care costs for home‐based palliative care service provision in Toronto,Canada

With increasing emphasis on the provision of home‐based palliative care in Canada, economic evaluation is warranted, given its tremendous demands on family caregivers. Despite this, very little is known about the economic outcomes associated with home‐based unpaid care‐giving at the end of life. The aims of this study were to (i) assess the magnitude and share of unpaid care costs in total healthcare costs for home‐based palliative care patients, from a societal perspective and (ii) examine the sociodemographic and clinical factors that account for variations in this share. One hundred and sixty‐nine caregivers of patients with a malignant neoplasm were interviewed from time of referral to a home‐based palliative care programme provided by the Temmy Latner Centre for Palliative Care at Mount Sinai Hospital, Toronto, Canada, until death. Information regarding palliative care resource utilisation and costs, time devoted to care‐giving and sociodemographic and clinical characteristics was collected between July 2005 and September 2007. Over the last 12 months of life, the average monthly cost was $14 924 (2011 CDN$) per patient. Unpaid care‐giving costs were the largest component – $11 334, accounting for 77% of total palliative care expenses, followed by public costs ($3211; 21%) and out‐of‐pocket expenditures ($379; 2%). In all cost categories, monthly costs increased exponentially with proximity to death. Seemingly unrelated regression estimation suggested that the share of unpaid care costs of total costs was driven by patients' and caregivers' sociodemographic characteristics. Results suggest that overwhelming the proportion of palliative care costs is unpaid care‐giving. This share of costs requires urgent attention to identify interventions aimed at alleviating the heavy financial burden and to ultimately ensure the viability of home‐based palliative care in future.     

A survey of end-of-life care in care homes: issues of definition and practice

Care homes throughout the UK provide long-term care for frail older people. Whilst care homes are a home for life, many of the older people living in this setting also die there. There is increased interest in improving the care that older people receive in care homes towards the end of life. One way to achieve this has been through links with specialist palliative care services. The knowledge held in care homes by staff, residents and their family carers has yet to be fully integrated into this work. Consequently, a postal survey of care home managers in one English county was undertaken to examine the characteristics of end-of-life care for older people in these care homes. We sought to establish the managers' understanding of end-of-life care; the extent to which dying and death is present in this setting; the attributes of the resident population living in these care homes; and the availability of resources to support the provision of end-of-life care in this setting. The survey identified that managers held diverse understandings regarding the meaning of end-of-life care. The features of the residents' conditions and the dying that they experience requires a different way to conceptualise end-of-life care. A longer-term perspective is offered here that encompasses the whole period of a person's residence in a care home.     

‘A bed in the middle of nowhere’: Parents' meanings of place of death for adults with cystic fibrosis

As populations age and chronic conditions become more prevalent, an individual's ability to choose the location of their end-of-life care and death is increasingly considered important in the provision of good healthcare, with home implied as the ‘best’ place of death through UK government policy and specialist and voluntary palliative care services. However, considering meanings of place of end-of-life care and death is complex for young adults with life-limiting conditions where the disease course is variable and uncertain, and aggressive and palliative treatments are administered both at home and in hospital often until death. Although ‘place’ is a pivotal element in healthcare practice, research and policy, there has been little attempt to understand the meaning and importance of place in understanding experiences of care at end of life. Through analysis of in-depth interviews and letters received from parents of 27 young adults in England, Scotland and Wales who died from cystic fibrosis from 1999 to 2002 aged 17–36 years, key factors that influence families' meanings of place at end of life are presented. Both home and hospital deaths are reported, with no deaths in hospices. Preferences for possible locations of death are generally limited early in the disease course by choice of aggressive treatment, particularly lung transplantation. Rate of health decline, organisation and delivery of services, and relationships with specialist and general healthcare staff strongly influence parents' experience of death at home or in hospital, although no physical location was regarded a ‘better’ place of death. Meanings of, and attachment to place are mediated for families through these factors, questioning the appropriateness of a ‘home is best’ policy for those dying from life-limiting conditions.     

‘I am closer to this place’—Space,place and notions of home in lived experiences of hospice day care

In the United Kingdom hospice day care services are the fastest growing yet least researched of the palliative care services. Using photo-elicitation interviews with 11 day care patients attending a specialist hospice day care setting we explored their experiences of the hospice as a place and how these changed over time.Informed by concepts from existential and humanistic geography we propose three existential modes of being – Drifting, Sheltering and Venturing – which characterize the patients’ lived experiences of the hospice. Our phenomenological analysis shows that the hospice is (re)constructed purposefully to achieve a sense of ‘home’ and ‘homelikeness’, creating an important therapeutic landscape for patients.     

Inequity in the provision of and access to palliative care for cancer patients. Results from the Italian survey of the dying of cancer (ISDOC)

Background  

The palliative services and programs have been developed with different intensity and modalities in all countries. Several studies have reported that a geographic variation in the availability and provision of palliative care services between and within countries exists, and that a number of vulnerable groups are excluded from these services. This survey estimates the distribution of places of care for Italian cancer patients during the last three months of their lives, the proportion receiving palliative care support at home and in hospital, and the factors associated with the referral to palliative care services.     

Can specially trained community care workers effectively support patients and their families in the home setting at the end of life?

Surveys indicate that many Australians would prefer to die at home, but relatively few do. Recognising that patients and their families may not have the support they need to enable end‐of‐life care at home, a consortium of care providers developed, and received funding to trial, the Palliative Care Home Support Program (PCHSP) across seven health districts in New South Wales, Australia. The programme aimed to supplement end‐of‐life care in the home provided by existing multidisciplinary community palliative care teams, with specialist supportive community care workers (CCWs). An evaluation of the service was undertaken, focussing on the self‐reported impact of the service on family carers (FCs), with triangulation of findings from community palliative care teams and CCWs. Service evaluation data were obtained through postal surveys and/or qualitative interviews with FCs, community palliative care teams and CCWs. FCs also reported the experience of their loved one based on 10 items drawn from the Quality of Death and Dying Questionnaire (QODD). Thematic analysis of surveys and interviews found that the support provided by CCWs was valued by FCs for: enabling choice (i.e. to realise end‐of‐life care in the home); providing practical assistance (“hands‐on”); and for emotional support and reassurance. This was corroborated by community palliative care teams and CCWs. Responses by FCs on the QODD items indicated that in the last week of life, effective control of symptoms was occurring and quality of life was being maintained. This study suggests that satisfactory outcomes for patients and their families who wish to have end‐of‐life care in the home can be enabled with the additional support of specially trained CCWs. A notable benefit of the PCHSP model, which provided specific palliative care vocational training to an existing community care workforce, was a relatively rapid increase in the palliative care workforce across the state.     

Tracking the evolution of hospice palliative care in Canada: A comparative case study analysis of seven provinces

Background  

An aging population, rise in chronic illnesses, increase in life expectancy and shift towards care being provided at the community level are trends that are collectively creating an urgency to advance hospice palliative care (HPC) planning and provision in Canada. The purpose of this study was to analyze the evolution of HPC in seven provinces in Canada so as to inform such planning and provision elsewhere. We have endeavoured to undertake this research out of awareness that good future planning for health and social care, such as HPC, typically requires us to first look backwards before moving forward.     

Receiving care at home at end of life: characteristics of patients receiving Hospice at Home care

BACKGROUND: Specialist Hospice at Home (HAH) services play an important role in the provision of care for people who choose to die at home. METHODS: A pilot evaluation of a new HAH scheme in East Midlands, UK was carried out between January and December 2003, in which routine data were collected and analysed. RESULTS: In 2003, 155 people received the HAH service. Most patients (83%) were over the age of 60 and had a cancer diagnosis (92%). Almost one-third of patients waited for 2 days or longer to receive care from the HAH scheme. These patients were around three times as likely to be in an inpatient hospice (RR=3.27; 95% CI=1.19-8.95) or an acute hospital (RR=2.85; 95% CI=1.33-6.09) when they were referred. The median length of service use was 4 days. CONCLUSIONS: The HAH service enabled people to die at home in the last days of life. Given the aging population, we would expect the demand for such services to further increase. Shortcomings identified included delay in receiving care for people moving to home from hospices and acute hospitals.     

Experiences of end-of-life care in community hospitals

Concerns remain that health and social care services often fail people dying of chronic illnesses other than those with cancer. British government policy aims to improve end-of-life care and to enable people to make choices about place of care near the end of life, with the assumption that home is often the preferred option. However, some elderly people may lack suitable social networks, family carers and other resources to remain at home. Community hospitals offer a potentially accessible resource for local provision of end-of-life care. They have the advantage of being located within easy reach for family members, are staffed by local people and in most of them, general practitioners can maintain continuity of care. This paper examines patients' and family carers' experiences of end-of-life care in community hospitals. In-depth organisational case studies were conducted in six community hospitals in the south of England. Interviews were undertaken with elderly patients dying of cancer and other advanced conditions (n = 18) and their family carers (n = 11). Qualitative analysis of transcribed interviews were undertaken, using the principles of grounded theory. Patients and family carers valued the flexibility, local nature (which facilitated visiting) and personal care afforded to them. Most participants regarded community hospitals as preferable to larger district general hospitals. Our research reveals that these participants regarded community hospitals as acceptable places for end-of-life care. Finally, we discuss the implications of our findings for improving end-of-life 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.     

晚期癌症患者居家宁养服务与住院姑息治疗成本-效益分析

目的:分析晚期癌症患者居家与住院姑息性治疗的疗效及医疗费用支出,为晚期癌症患者居家及住院治疗提供参考。方法:统计50位居家接受宁养服务和50位住院接受姑息治疗的患者的医疗费用并进行比较分析,通过问卷调查统计他们的生活质量并进行对比分析。结果:居家接受宁养服务的患者的医疗费用明显低于住院接受姑息治疗的患者(P<0.05),两组患者的生活质量无明显差异(P>0.05)。结论:晚期癌症患者居家接受宁养服务是一种较好的选择,且可避免医疗资源的浪费和过度治疗。     

‘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.