Developing a framework for primary palliative care services

Practice and empirical data indicate concerns regarding the delivery of primary palliative care, particularly the provision of a multidisciplinary approach. A collaborative study was undertaken between an academic unit and primary care practice to evaluate current care provision and explore methods of developing services. A two-phase study was carried out over a period of 18 months using an action research approach, in order to facilitate concurrent service evaluation, change in practice, and the involvement of professionals in research and practice development. The first phase highlighted the need to enhance primary palliative care services; a number of practice changes were identified and implemented during the second phase and evaluated using quantitative and qualitative methods. Data demonstrated the enhancement of services, benefits to patient care and professional working and the viability of an innovative model of palliative care delivery - that of a surgery-based clinic for palliative care patients and carers. A framework for the provision of multidisciplinary palliative care in the community was developed.     

Palliative care provision for people with intellectual disabilities: a questionnaire survey of specialist palliative care professionals

There is a growing interest in the palliative care needs of people with intellectual disabilities (ID). There are indications that palliative care staff face particular problems providing care to this group, but empirical data about the extent of the problem are lacking. This study aims to gain insight into the current use of palliative care services by people with ID in London, to identify the prevalence and severity of problems faced by palliative care professionals and to identify strategies that will facilitate an improvement in access and delivery of palliative care services to people with ID. A postal questionnaire was developed for this study and returned by 543 professionals working in 53 specialist palliative care services in London (57% response rate). Sixty-seven percent of respondents had supported a patient with ID at some point in their palliative care career. Problems arising from the patient's difficulty in understanding the illness and treatment were reported as the most pertinent. Other prevalent problems included difficulty around communication, assessment and patient fear. Respondents emphasised the need for collaboration with carers and other services. Link worker schemes, training and access to background information were seen as most helpful. The authors conclude that palliative care services appear to be under-used by people with ID. There is a distinct set of problems related to the provision of palliative care for people with ID. Palliative care services should assess the nature and level of their service provision for people with ID. Future research should include epidemiological studies to assess need and include people with ID as informants to evaluate the effectiveness of palliative care provision.     

Effective palliative care for minority ethnic groups: the role of a liaison worker

As the issue of equality of access to health-care services becomes more important, there is increasing concern that specialist palliative care services in the UK are under-used by minority ethnic groups (Haroon-Iqbal et al, 1995; Karim et al, 2000). Research into the provision of such services for black and minority ethnic communities identified a number of factors that contribute to a perceived low take-up of services (Hill and Penso, 1995). A strategy to promote ethnic and racial sensitivity in palliative care service delivery, and policies to improve access to, and take-up of, services was recommended. This article presents the important elements relating to equal access to specialist palliative care and the provision of culturally sensitive services, and examines the role of the Macmillan Ethnic Minorities Liaison Officer in the Bradford community palliative care team.     

Mainstreaming palliative care for cancer patients in the acute hospital setting.

Palliative care is now emerging as an integrated part of mainstream health care delivery. The importance of patient choice regarding place of dying means that a substantial proportion of palliative care provision occurs in community settings. In part, this is due to the inappropriateness of the acute hospital setting for the care of dying patients. However, most patients with cancer and other terminal illnesses are diagnosed and treated in acute hospitals. Acute hospitals are also the most common setting where people actually die. Therefore, there remains a need for skilled and compassionate provision for the care of dying patients in the acute hospital setting. This paper presents a case for the provision of palliative care services in teaching hospitals. It further argues that a high level of integration between cancer treatment services and palliative care services is needed to optimize the care of cancer patients.     

Residential aged care: the last frontier for palliative care

AIM: This paper is a report of an explorative study describing the perceptions and beliefs about palliative care among nurses and care assistants working in residential aged care facilities in Australia. BACKGROUND: Internationally, the number of people dying in residential aged care facilities is growing. In Australia, aged care providers are being encouraged and supported by a positive policy platform to deliver a palliative approach to care, which has generated significant interest from clinicians, academics and researchers. However, a little is known about the ability and capacity of residential aged care services to adopt and provide a palliative approach to care. METHODS: Focus groups were used to investigate the collective perceptions and beliefs about palliative care in a convenience sample of nurses and care assistants working in residential aged care facilities in Australia. Thematic content analysis was used to analyse the data, which were collected during 2004. RESULTS: Four major themes emerged: (1) being like family; (2) advocacy as a key role; (3) challenges in communicating with other healthcare providers; (4) battling and striving to succeed against the odds. Although participants described involvement and commitment to quality palliative care, they also expressed a need for additional education and support about symptom control, language and access to specialist services and resources. CONCLUSION: The residential aged care sector is in need of support for providing palliative care, yet there are significant professional and system barriers to care delivery. The provision of enhanced palliative care educational and networking opportunities for nurses and care assistants in residential aged care, augmented by a supportive organizational culture, would assist in the adoption of a palliative approach to service delivery and requires systematic investigation.     

Roles, service knowledge and priorities in the provision of palliative care: a postal survey of London GPs

OBJECTIVES: To explore general practitioners' (GPs) current involvement in and attitudes towards the provision of palliative care in primary care. METHODS: Postal survey of 356 London-based GPs, assessing attitudes towards palliative care provision, district nursing and specialist palliative care services, and priorities for future service development. RESULTS: Currently, 65% of GPs were providing palliative care to patients on their list; 72% agreed or strongly agreed palliative care was a central part of their role; and 27% wanted to hand care over to specialists. Most GPs (66%) disagreed with the statement that 'palliative care is mainly district nursing (DN) work'. Many were unaware of out-of-hours DN and specialist palliative care services. Multi-variable analysis found four GP characteristics--larger practice size, more years experience as a GP, receipt of palliative care education, and current provision of palliative care--were associated with agreement that palliative care was central to a GP's role. CONCLUSION: A minority of NHS GPs in London would rather have no involvement in palliative care in primary care. Knowledge of current services for palliative care is generally poor among GPs. These findings highlight potential gaps in services, particularly in small practices. Specialists will need to consider these factors in working with GPs to develop primary palliative care and to enable greater access to specialist palliative care.     

Hospice and palliative care development in Africa: a multi-method review of services and experiences

There is a paucity of information on hospice and palliative care provision in Africa and only a weak evidence base upon which to build policy and practice development. We set out to assess the current state of provision across the continent, mapping the existence of services country by country and exploring the perspectives and experiences of those involved. A multi-method review was conducted involving a synthesis of evidence from published and gray literature, ethnographic field visits to seven countries, qualitative interviews with 94 individuals from 14 countries, and the collation of existing public health data. Forty-seven African countries were reviewed, involving the assistance of numerous hospice and palliative care activists, including clinicians, managers, volunteers, policy makers, and staff of donor organizations. The 47 countries of Africa could be grouped into four categories: no identified hospice or palliative care activity (21 countries); capacity building activity is underway to promote hospice and palliative care delivery (11 countries); localized provision of hospice and palliative care is in place, often heavily supported by external donors (11 countries); and hospice and palliative care services are approaching some measure of integration with mainstream service providers and gaining wider policy recognition (four countries). Overall, services remain scattered and piecemeal in most African countries, and coverage is poor. Nongovernmental organizations are the predominant source of provision. Major difficulties relate to opioid availability, workforce development, and achieving sustainable critical mass. Models exist in Uganda, Kenya, South Africa, and Zimbabwe for the development of affordable, sustainable community-based hospice and palliative care services, but sensitivity is required in adopting Western models of hospice and palliative care for implementation in the African cultural context. Overall, interest in the development of hospice and palliative care in Africa has never been greater.     

Acute hospital-based palliative care services for the older person

With an increasing elderly population, estimated to rise to 26% of the UK's total population by 2020 (World Health Organization (WHO), 2004), this demographic represents a large area of potential referrals for hospital-based palliative care services. In planning service provision for this group, all nurses must examine current levels of access for older people to specialist palliative care services. This article explores barriers to the equity of access for older people to palliative care services, taking into account cultural, political, medical and ethical obstacles to the older person receiving evidence-based palliative care. The article analyses the benefits of palliative care involvement in a group who have multiple comorbidities and whose concerns, including adequate symptom control and assistance in making end-of-life decisions, reflect the philosophies inherent in the palliative care movement. Political- and clinical-based strategies in overcoming these barriers involving multidisciplinary working and education are necessary to ensure that the older person is being treated with dignity and fairness throughout his/her hospital journey.     

Palliative care of patients with a primary malignant brain tumour: case review of service use and support provided

Individuals with a primary malignant brain tumour require intensive palliative care services because of the symptoms and cognitive problems they experience. Many of these patients stay with their families at home, being supported by palliative care home teams rather than being admitted for hospice care. The provision of respite care and community services to support these families goes largely unreported. This study arises out of a need to review support services for patients and carers within one cancer and palliative care service. This retrospective case analysis identifies that there are a range of services used in the community to support patients with primary malignant brain tumours but that only a small proportion receive inpatient hospice care. District nursing services were extensively used but also a high number (74%) of patients were admitted to local hospitals for symptom management. This paper attempts to explore the services utilized but also questions the apparently limited provision of hospice care for supporting individuals in the palliative care stages of such an illness. This paper considers the illness trajectory, the complex symptoms experienced by patients and respite services utilized. Issues of those engaged in informal care giving and in the provision of support for those with a primary malignant glioma are also considered.     

Home-based palliative care for children: the case for funding

Paediatric palliative care services have grown up in response to local needs with the result that provision is patchy and in some areas non-existent. Funding for existing services comes from a variety of sources and in the case of teams funded in 2003 from The New Opportunities Fund, there is uncertainty about future provision as funding streams come to an end. This article illustrates how home-based palliative care achieves the objectives of the NHS Plan (DH 2000a) and makes the case for the continuation of paediatric palliative care teams already established through New Opportunities Fund (NOF) funding as these provide a ready made, quality service meeting the government agenda and addressing the needs of patients in a place and at a time to suit them.     

Mapping Levels of Palliative Care Development: A Global Update

Our purpose is to categorize palliative care development, country by country, throughout the world, showing changes over time. We adopt a multi-method approach. Development is categorized using a six-part typology: Group 1 (no known hospice-palliative care activity) and Group 2 (capacity-building activity) are the same as developed during a previous study (2006), but Groups 3 and 4 have been subdivided to produce two additional levels of categorization: 3a) Isolated palliative care provision, 3b) Generalized palliative care provision, 4a) Countries where hospice-palliative care services are at a stage of preliminary integration into mainstream service provision, and 4b) Countries where hospice-palliative care services are at a stage of advanced integration into mainstream service provision. In 2011, 136 of the world's 234 countries (58%) had at least one palliative care service—an increase of 21 (+9%) from 2006, with the most significant gains having been made in Africa. Advanced integration of palliative care has been achieved in only 20 countries (8.5%). Total countries in each category are as follows: Group 1, 75 (32%); Group 2, 23 (10%); Group 3a, 74 (31.6%); Group 3b, 17 (7.3%); Group 4a, 25 (10.7%); and Group 4b, 20 (8.5%). Ratio of services to population among Group 4a/4b countries ranges from 1:34,000 (in Austria) to 1:8.5 million (in China); among Group 3a/3b countries, from 1:1000 (in Niue) to 1:90 million (in Pakistan). Although more than half of the world's countries have a palliative care service, many countries still have no provision, and major increases are needed before palliative care is generally accessible worldwide.     

A comparative review of palliative care development in six countries represented by the Middle East Cancer Consortium (MECC)

Palliative care development and services were reviewed in the region represented by the six members of the Middle East Cancer Consortium: Cyprus, Egypt, Israel, Jordan, the Palestinian Authority, and Turkey. The multimethod review synthesized evidence from ethnographic field visits to inpatient units, home care hospice teams and free-standing hospices, including interviews with hospice and palliative care clinicians, administrators, volunteers, policy makers and academic researchers. Public health data and relevant literature were collated together with internet-accessed information on services and health care systems. A total of 69 services were located; two country members have a history of relatively sustained development of hospice and palliative care, but provision across the Middle East Cancer Consortium region is highly variable at a local level. Considerable barriers to service development were identified in a region already struggling with many military and political conflicts. Key problems are a lack of secure funds and government support, inadequate professional training programs, opioid phobia in professionals and the public, and a lack of awareness and understanding of palliative care needs at public, government, and professional levels. Key areas for further attention were increasing national and international professional training and public education programs, improving opioid legislation and health care policies, negotiating for secure government or health insurance funding provision, raising awareness about the need for pediatric services and for patients with other illnesses, as well as for those with cancer, and working to integrate palliative care into mainstream health service provision and education.     

Differences in understanding of specialist palliative care amongst service providers and commissioners in South London

This paper describes a study that sought to identify service providers' and commissioners' understanding of specialist palliative care within the context of changing service provision in one area of South London. Using a formative evaluation framework, we examined the views of 44 providers and commissioners from statutory and voluntary health and social care services about their understanding of specialist palliative care services and, in particular, the remit of current service provision delivered by a Marie Curie Centre. Face-to-face audiotaped semi-structured interviews were conducted. A qualitative thematic analysis highlighted a number of issues including a lack of consensus about definitions of palliative care, ambivalence about referral procedures, and a lack of role clarity between specialist and generalist palliative care providers. The study took place within the real world context of changing services and economic pressures. This raises methodological issues about how services are evaluated and what terminology is used to describe end-of-life care. The study findings confirm that confusion about terminology and referral criteria remain major issues for clinical workers and organizations seeking to access services.     

How and why do GPs use specialist palliative care services?

This study presents findings on the interaction of generalists and specialists within palliative care. General practitioners (GPs) are central to community palliative care as most of the last year of a patient's life is spent at home under the care of the primary health care team. GPs see few palliative care patients each year, however, and access to specialist palliative care services for support, advice and referral can be important particularly to support patients who wish to die at home. The aim of this study was to explore GP use of and attitudes towards specialist palliative care services through semi-structured interviews in inner city, urban and rural areas. It was part of a longitudinal evaluation of an educational intervention, and the quantitative components are reported elsewhere. Sixty-three GPs were interviewed, having been sampled randomly from inner city, urban and rural health authority district lists. While most interviewees reported using specialist palliative care services as a resource, other models of use included working together as an extended team, seldom using such services and handing over care or responsibility entirely. Availability of services clearly shaped use, but previous experience and expectations of easy access were also important. Patterns of use were not necessarily fixed, but dependent also on the differing needs of and wishes of patients and carers. Specialist palliative care services need to be aware of such variations in ways of working and to consider the implications for the capacity and flexibility of both primary care and specialist service provision.     

Is there a need for weekend face-to-face inpatient assessments by hospital specialist palliative care services? Evaluation of an out-of-hours service

There is an increasing demand for hospital specialist palliative care services to be made more accessible outside of normal working hours. However, it has been argued that extended service provision could be misused and that specialist telephone advisory services are an adequate response to this demand. A 'routine' Saturday face-to-face visiting service was introduced into a hospital palliative care team and the service was evaluated to determine whether it was being utilised appropriately. A retrospective notes review of out-of-hours assessments was undertaken. Anonymised data relating to the nature of the interaction with the palliative care team and the outcome of the consultation were entered into an electronic database. A random sample of routine weekday interactions was also evaluated. A total of 336 Saturday and 93 weekday assessments were analysed. Most of the Saturday assessments resulted in a significant change in management (57%) or were undertaken on patients close to death (10%). There were 39/336 (12%) new referrals assessed on Saturdays. There were few differences between the nature of the Saturday and the weekday service and no evidence of 'inappropriate' referrals. We found clear evidence of the need for a specialist out-of-hours face-to-face inpatient visiting service for hospital palliative care.     

Specialist community palliative care services – a survey of general practitioners' experience in Eastern Sydney

The role of the general practitioner (GP) in providing palliative care in the community is of increasing importance. Concomitantly, there is more interaction between the palliative care support services and the GP. Even when there is input from the palliative care support services, there can be barriers that impede effective delivery of palliative care by the GP. These include poor communication between the GP and the supporting team, inaccessibility of the service and inadequate after-hours coverage. We carried out a postal survey to assess what experiences and perceptions GPs working within the Eastern Sydney Area had of our palliative care support service. The response was generally favourable, with most GPs finding the level of communication, accessibility, usefulness of advice given and degree of follow-up visits by the service to be adequate. However, an important number felt that we tended to over-hospitalise our patients.     

The development of palliative care in national government policy in England, 1986-2000

Palliative care is an established and expanding speciality, important in many areas of service delivery within health and social services and the voluntary sector. Traditionally, palliative care is viewed as most closely linked to cancer services. National government policy has an inevitable impact on the organization and provision of such services. As part of a wider project, an investigation of the content and development of English government policy relating to palliative care was carried out. The development of policy follows a cycle that has no closure; it takes place within changing contexts, between multiple organizations and across sectors. Data collection involved the collation and close examination of policy documents and other documents that demonstrably influenced policy. This was in order to identify a national view of policy intentions for palliative care. In total, 53 policy documents were examined. The analysis revealed a number of pertinent issues relating to shifts in funding policies and an evolving definition of palliative care. There is an increasing recognition in the policy documents of the need for palliative care to extend beyond the traditional focus on cancer services and terminal illness. In tandem, is an increasing recognition of the need for partnership between sectors, reflected in more recent health and social services legislation.     

Palliative care provision and its impact on psychological morbidity in cancer patients

In response to many influences, palliative care services in the UK are evolving rapidly, and are increasingly challenged to demonstrate equity, access and effectiveness. This article discusses the principles, philosophy and status of palliative care in the UK in the context of recent NHS developments. A case study is employed in order to critically evaluate the implementation of the palliative care approach, focusing on the specific issue of the assessment of anxiety and depression in the cancer setting. The provision of a comprehensive and integrated clinical service is a constant challenge in this patient group. In order to increase awareness and facilitate further development of patient services, and ultimately improve clinical practice, several factors are highlighted. These include the impact of multiprofessional team care, the problems inherent in the diagnosis of depression and the question of whether cancer nurses are adequately prepared to handle patients' psychological morbidity.     

Hospice and palliative care development in India: a multimethod review of services and experiences

Palliative care has been developing in India since the mid-1980s, but there is a dearth of evidence about service provision on which to base national policy and practice. The aim of this study was to assess the current state of palliative care in India, mapping the existence of services state by state, and documenting the perspectives and experiences of those involved. A multimethod review was used, which included synthesis of evidence from published and grey literature, ethnographic field visits, qualitative interviews with 87 individuals from 12 states, and collation of existing public health data. The review identified 138 hospice and palliative care services in 16 states and union territories. These are mostly concentrated in large cities, with the exception of Kerala, where they are much more widespread. Nongovernmental organizations, public and private hospitals, and hospices are the predominant sources of provision. We were unable to identify palliative care services in 19 states/union territories. Development of services is uneven, with greater provision evident in the south than the north, but for the majority of states, coverage is poor. Barriers to the development of palliative care include: poverty, population density, geography, opioid availability, workforce development, and limited national palliative care policy. Successful models exist for the development of affordable, sustainable community-based palliative care services. These have arisen from adapting Western models of hospice and palliative care for implementation in the Indian cultural context. Further work is required to ensure that the growing interest in hospice and palliative care in India is used to increase the momentum of progress.