Local Palliative Care Services Research Articles

Using the Tasmanian Palliative and End of Life Care Policy Framework (2022) to assess service delivery in a rural general practice.

This commentary uses the Tasmanian Palliative and End of Life Care Policy Framework (2022; the TPE Framework) to reflect upon palliative care services delivered by a rural Tasmanian general practice. Rural populations have challenges in accessing many healthcare services, including palliative care. General practitioners (GPs) and other primary healthcare workers are frequently relied upon to deliver palliative care in rural Australia. Palliative care is often needed before the end-of-life phase and patients prefer this to be delivered in the community or at home. GPs face challenges and barriers in continuing to deliver home-based palliative care services. All Medical Benefit Scheme billings for after-hours or home-based palliative care provided by the practice, between September 2021 and August 2022, were identified and patient demographic and clinical details collated. To further understand this data, nine GPs were surveyed to explore their attitudes to provision of palliative care service to the local rural communities they serve. These data highlighted several priority areas of the TPE Framework. The TPE Framework is used here to add to the shared understanding of palliative care service delivery in a rural community, and to see if GP's responses align with the priorities of the TPE Framework. Of the 258 after-hours and home-visits delivered over a 12-month period, almost 58% (n = 150) were for palliative care. Patients receiving palliative care were generally older than non-palliative patients visited (79.9 years vs. 72.0 years respectively; p = 0.004). Patients not at imminent risk of death (64.0%) were more frequently recipients of home-visits. Of the nine GPs responding to the survey, most intended to continue home visits for palliative patients. Disincentives to providing palliative care during home visits included a lack of time during the day (or after hours), low levels of interdisciplinary coordination or role-definition, and inadequate remuneration. Existing frameworks can be used as an implementation and evaluation guide to help understand local palliative care services. Using a Framework, a rural general practice in Tasmania reflected on their provision of palliative care services. Providing holistic palliative care services from a rural general practice is desirable and achievable with a coordinated, team-based approach. Access to and integration with specialist services remains a key component of community-based palliative care pathways.

Palliative care: the need of the modern era.

There is a great need for palliative care in the modern era of medicine. Despite medical advances, patients with life-limiting illnesses still suffer significantly. Palliative care emerged a half century ago as an ethos based on compassion and care for patients and their families to relieve their suffering. It entails a paradigm shift from the biomedical model to the biopsychospiritual model. Palliative care is recognised by the World Health Organization as an essential part of the continuum of universal health coverage. In 2014, the World Health Assembly approved a resolution on "Strengthening of palliative care as a component of comprehensive care throughout the life course". Despite Hong Kong's relatively good local palliative care service coverage for patients who died of cancer and end-stage renal failure, service gaps for palliative care do exist among our ageing population with non-malignant life-limiting illnesses. We strongly urge the Hong Kong Government to develop our local palliative care policy in response to the World Health Assembly's resolution. Growing international and local evidence demonstrates the impacts of palliative care on patient outcomes, caregivers, and health care. Such outcomes can be service-based, disease-based, or symptom/suffering-based. The goal of palliative care is to relieve health-related suffering. Evidence-based management of pain, breathlessness, and psychospiritual suffering are discussed. Care in the end-of-life phase should be an integral part of palliative care, promoting patient choice, advance care planning, and good death.

Development and Implementation of a Pediatric Palliative Care Program in a Developing Country

Palliative care is recognized as an important component of care for children with cancer and other life-limiting conditions. In resource limited settings, palliative care is a key component of care for children with cancer and other life-limiting conditions. Globally, 98% of children who need palliative care live in low- or middle-income countries, where there are very few palliative care services available. There is limited evidence describing the practical considerations for the development and implementation of sustainable and cost-effective palliative care services in developing countries. Our aim is to describe the key considerations and initiatives that were successful in planning and implementing a hospital-based pediatric palliative care service specifically designed for a resource-limited setting. Bangabandu Sheikh Mujib Medical University (BSMMU) is a tertiary referral hospital in Bangladesh. Local palliative care services are very limited and focused on adult patients. In partnership with World Child Cancer, a project establishing a pediatric palliative care service was developed for children with cancer at BSMMU. We describe four key elements which were crucial for the success of this program: (1) raising awareness and sensitizing hospital administrators and clinical staff about pediatric palliative care; (2) providing education and training on pediatric palliative care for clinical staff; (3) forming a pediatric palliative care team; and (4) collecting data to characterize the need for pediatric palliative care. This model of a hospital-based pediatric palliative care service can be replicated in other resource-limited settings and can be expanded to include children with other life-limiting conditions. The development of pilot programs can generate interest among local physicians to become trained in pediatric palliative care and can be used to advocate for the palliative care needs of children.

Impact of intervention aimed at improving the integration of oncology units and local palliative care services: results of the multicentre prospective sequential MIRTO study

BackgroundChemotherapy (CT) in patients with advanced cancer (ACP) near the end of life is an increasing practice of oncology units. A closer integration with palliative care (PC) services could reduce the use of potentially harmful CT. This prospective study is aimed at assessing whether a more integrated care model could reduce CT use near the end of life and increase local PC service utilisation.MethodsThe study enrolled sequentially two cohorts of ACP with an estimated life expectancy of ≤6 months. In the first cohort, the usual oncologist’s practice to prescribe CT and to activate local PC services were recorded. In cohort 2, the oncologist’s decision was taken after an in-hospital consultation with the local PC teams. After patient death, a follow-back survey was carried out.ResultsThe two cohorts included 109 and 125 evaluable patients, respectively. The oncologist’s decision to prescribe CT occurred in 51.4% and 60%, respectively: the percentages of patients receiving the final CT administration in the last 30 days of life did not differ in the two cohorts (33.9% and 29.3%, respectively,p=0.83). Conversely, an increase in home PC service utilisation (from 56.9% to 82.4%, p=0.00), at home deaths (from 40.4% to 56.8%, p=0.01) and in-hospice deaths (from 8.3% to 19.2%, p=0.00) occurred in cohort 2.ConclusionThe implementation of an initial in-hospital consultation of oncologists and experienced home PC teams has not reduced the use of CT near the end of life but increased PC service utilisation and reduced in-hospital deaths.

RELEVANT, RESPONSIVE AND REALLY USEFUL

IntroductionNurse-led clinics are recognised as an important part of health care provision as service demand across the UK continues to escalate. The End of life Care Strategy recommended that all...

P165 Engaging minority ethnic communities: an evaluation of a Marie Curie Hospice project aiming to improve access to palliative care services

BackgroundThere is increasing emphasis on ensuring that access to healthcare is equitable in the UK, yet on-going evidence demonstrates that minority ethnic communities are underrepresented in accessing palliative care. A...

Can an intervention alter the perception of palliative care services for heart failure patients?

BackgroundAlthough the number of palliative care services which will accept patients with heart failure has increased in recent years, little is known currently about heart failure patients' knowledge of palliative...

Recruiting malignant & non-malignant disease patients: lessons from a palliative care RCT

Introduction and aimsRecruiting patients to palliative care randomised controlled trials (RCTs) is challenging. This paper describes and analyses recruitment trajectories for patients with malignant and non-malignant disease to a palliative...

Consultation with users, carers and staff in order to improve local palliative care services – how to do it and views on current services

Objective: To learn about the quality of local services and develop an appropriate methodology for future consultation.Methods: Tape recordings were made of patient and carer consultations using semi-structured interviews and staff focus groups using semistructured questioning. These were then transcribed and analysed.Results: The majority of feedback was positive. Continuity of care is very important and complex when a large range of agencies are involved in an individual package of care. Many staff expressed concern that expectations of patients are beyond what they are able to deliver. Participants wanted to have choice in the way that they were consulted. It is difficult to enable staff to support the consultation process whilst meeting constraints imposed by ethical considerations. The consultation work must demonstrate a difference in order to encourage enthusiasm from staff or patients/carers for projects in the future.Conclusions: Users of palliative care services are a particularly hard group to access and consult with; we must demonstrate that their contribution is likely to lead to change.

“They Should Come Out Here ...”: Research Findings on Lack of Local Palliative Care Services for Australian Aboriginal People

Although Aboriginal Australians experience morbidity and mortality rates far greater than that of the wider Australian population, to date, their access to culturally appropriate palliative care services has remained unexplored. This article provides findings from an Australian National Health and Medical Research funded study that documents the availability of palliative care services to Aboriginal peoples of the Northern Territory, Australia. The data were collected through a series of open-ended, qualitative interviews with a cross section of Aboriginal peoples and health professionals conducted during a 2-year period. The findings provide an overview of the palliative care services that are presently available and reflect a serious lack of local, culturally appropriate palliative care services. This research shows the similarities in the struggles and difficulties faced by Australian Aboriginals and Indigenous peoples worldwide. The hope is that the suggestions put forward for improvement will one day be useful for the world's Indigenous peoples.

Exploring Aboriginal peoples’ experience of relocation for treatment during end-of-life care

to explore indigenous peoples' experience of relocation for medical treatment during end-of-life care. the data were collected from 72 qualitative interviews conducted throughout the regional, rural and remote areas of the Northern Territory, Australia, with Aboriginal patients and carers and the health professionals who cared for them. relocation for indigenous peoples is a frightening experience. There are a myriad of fears including: the fear of leaving home, especially for people who had never been away from their home lands; the fear of dis-empowerment associated with leaving the support of family networks; fears about hospital environments and 'high-tech' treatments; fear of cultural alienation for familiar foods and ways of being; fear of travel; fear of loneliness; fear of language and communication barriers; financial fears; and fear of dying away from the homeland. the findings demonstrate the strong need for building-up local palliative care services and raise significant questions about the cultural appropriateness of the Western biomedical rationale for relocation during end-of-life care.

Understanding Death and Dying in Select First Nations Communities in Northern Manitoba: Issues of Culture and Remote Service Delivery in Palliative Care

Objectives. The purpose of this study was to delineate and describe the local palliative care services available to residents of remote Aboriginal communities in northern Manitoba; to identify attitudes and beliefs ab0ut death, dying and palliative care in these communities; and to explore obstacles related to palliative care service delivery from the perspectives of culture and geographic isolation.Study Design. Forty-four in-depth semi-strn.ctured interviews were conducted with a reputational sample of key informants including Aboriginal people resident in remote communities, community elders and religious leaders, doctors, nurses and allied health care providers working in First Nations Communities, as well as specialist service providers in Winnipeg. Thematic qualitative analysis was done on the data collected. Data collected from interviews with northern physicians and nurses was coded and analyzed.Results. Currently, many Aboriginal people living in remote communities are transported to large urban centers to die, isolated from friends, family and their culture. However, the majority of Aboriginal people and health care providers interviewed reported that Aboriginal people living in remote communities would prefer to die at home. The issues surrounding palliative care provision in remote Aboriginal communities are cultural and geographic. Culturally sensitive care requires that patients have access to family supports and traditional services if requested. Geographic isolation requires that:1. patient-specific care plans be created for use in the remote community;2. effective lines of communication are established between remote health care providers and urban specialists;3. health care providers and family care-givers be properly trained to fill their respective roles; and4. appropriate guidelines and resources be available in the community to support this type of care.Conclusions. Providing the equipment, supports and education necessary for home-based palliative care in remote Aboriginal communities can be an effective way of addressing the medical, psycho-social, and spiritual needs of these patients. (Int J Circumpolar Health 2004; 63: 25–38)

Palliative care in the community for children with cancer in South East England

In-depth interviews and discussions were held with 40 different professionals in South East England involved in managing palliative care for children with cancer in the community. Participants included paediatric oncologists and outreach nurse specialists in tertiary centres, paediatricians in shared care units, children's community nurses, general practitioners, social workers and child psychologists. The research examined palliative care services available in the region, exploring attitudes to both current provision and possible service improvements. Providing palliative care in the community involves multi-agency collaboration and the study highlighted a range of different approaches to case management with the diversity of resources available. Key improvements proposed by health-care professionals included: better communication and liaison between all the professionals involved; clearer allocation of roles and responsibilities; 24-hour availability of specialist advice on palliative care for children with cancer; faster access to social work and psychology services at the community level; continuity of nursing and respite care. The provision of specialist local palliative care services for children with cancer was generally rejected. The participants favoured improving community palliative care for all children with life-limiting or life-threatening conditions with community nursing teams providing continuity of care and outreach nurses providing specialist advice and support.

Improving palliative care services: a pragmatic model for evaluating services and assessing unmet need.

Evaluating local palliative care services and identifying gaps in services for patients are crucial to the development of services which enable people to die at home in a well-supported environment. A review of the local strategy for providing respite and support services for palliative care patients and their carers was carried out in one area of south-east England. The review comprised four elements: identification of services available; interviews with provider 'stakeholders'; interviews with patients and carers; questionnaire survey of general practitioners and district nurses. The findings and outcome are described. It is suggested that this approach could be adopted by health authorities to form one part of a comprehensive system of needs assessment. Alternatively, it could be used by groups of providers to evaluate existing services and to identify potential improvements to services. Advantages and disadvantages of the approach for both commissioners of such reviews and those carrying them out are discussed.