Providing care for dying patients and their families is a fundamental part of general practice. There are barriers to the effective provision of such care at both individual and organisational levels (Mitchell et al., 2016), as well as cultural and social barriers to discussing the end of life and dying (www.dyingmatters.org). The extent to which we are exposed to death during training is highly variable, and the way that we are educated to cope with both the practicalities and the emotional aspects of death and dying receives little attention in undergraduate or postgraduate training.
Mesothelioma is a terminal disease linked to asbestos exposure, often with a poor prognosis. Palliative care can be valuable at all stages of the disease trajectory. GPs have a key role in supporting such patients. Continuity is difficult to provide within the current NHS primary care system but is highly valued by patients with mesothelioma.To understand the experiences of continuity in primary care among people with mesothelioma, their close persons, and their healthcare professionals; how they achieve this (or not); and how it affects healthcare service use.A systematic review of the international literature on continuity in primary care for people with advanced cancer. Realist case studies of patient journeys through the healthcare system (involving longitudinal interviews and observations with people with mesothelioma, their close persons, and their healthcare professionals; and exploration of the organisational context).Four themes were developed from the literature: the role of GPs in facilitating continuity; the role of patients and/or close persons in facilitating continuity; changing needs throughout the disease trajectory; and the organisational context in primary care. Preliminary findings from the case study data are presented. The coding framework includes themes relating to the initial programme theories, the Candidacy Framework, components of capacity, researcher reflexivity, and other disease- and service-specific themes.More research is needed to understand the experiences of continuity in primary care among people with mesothelioma. Specifically, there is an evidence gap regarding understanding their ability to achieve their desired level of continuity within primary care.
GPs and primary healthcare teams have a key role in the delivery of end-of-life care in the community, much of which requires a generalist approach, supported by hospice and specialist palliative care colleagues. Consequently the role of primary care in the delivery of end-of-life care in the community is integral, but can be overlooked in policy and service development, including in pandemic planning for primary care. Owing to the diminishing workforce and a need to look at alternative solutions to address this, Physician Associates (PAs) are a relatively new member of the medical team in the UK. They assess and manage patients in the medical model, with supervision from senior colleagues when they initially qualify, but as they grow in skills and experience this can be provided as required. PA numbers are expanding across primary and secondary care in both generalist and specialist settings, especially due to additional roles reimbursement and funded preceptorship schemes. As PAs grow in clinical experience as permanent team members, could they become more involved in a multi-disciplinary team approach to end-of-life care? There are examples of PAs working in palliative care services overseas, particularly in the USA due to the vast PA numbers there, but little research has been published on the efficacy of this, and there are no known examples in the UK.
Clinicians with medical training work in an environment where randomised controlled trials (RCTs) overshadow other forms of medical evidence in informing clinical practice, policy and guidance. It is no surprise that clinical researchers tend towards RCTs, since they are considered the ‘gold standard’ of research, placed firmly at the top of traditional hierarchies of evidence. RCTs are grounded in a positivist paradigm, seeking to answer the question ‘does this intervention work?’ by generating and testing a hypothesis in order to propose or dispute a particular truth. This approach may work well for research about specific medical treatments or technologies, including drug treatments such as a new pain medication. However, it is limited when it comes to research that examines less well-circumscribed, complex interventions, such as pain management through a new clinic or play therapy. Furthermore, in the ‘real world’ of clinical practice, it is rarely possible to control the environment in which a healthcare intervention is delivered. In paediatrics, the nature of a child’s illness or ability to comply with medical treatments is multifactorial, depending on their medical condition and on other factors including their family dynamics, access to education, housing and mental health. Clinicians must take these into account when making skilled decisions about evidence-based medical …
Background: The need for palliative care is rising globally with 76% of those who are in need living in low- and middle-income countries (LMICs). Digital health interventions (DHIs) have been identified as a means of making palliative care more widely accessible. This review summarizes the range and characteristics of DHIs used to deliver palliative care in LMICs and sought to identify factors that influence their implementation and utilization. Objectives: This review aims to summarize the range and characteristics of DHIs used to deliver palliative care in LMICs and identify factors that influence their implementation and utilization. Design: Mixed-method systematic review incorporating both quantitative and qualitative data. Data sources and methods: All studies focusing on DHIs for patients who need palliative care (adults/children) and their caregivers (patient and caregiver centred) in LMICs and published in English were identified through a systematic search of MEDLINE, EMBASE, PsycINFO and CINAHL databases. Data synthesis and analysis were carried out following the convergent integrated approach based on the Joanna Briggs Institute (JBI) methodology for mixed-methods systematic reviews. Results: Fifteen studies were included (three qualitative, four mixed-methods and eight quantitative studies). Telemedicine/mHealth was the most reported DHI utilized in LMICs in delivering palliative care. Patients and caregivers benefited from using DHIs in many ways including increased access to care with reduced discomfort, travel time and risk of health care-associated infections. Health care providers also reported that using DHI such as telemedicine enables them to provide care in a more effective and efficient way. Four factors were identified as the main barriers to implementation: resource constraints; literacy, training and skills; governance, operational and communication issues and technical issues. Conclusion: DHIs, such as telemedicine, have the potential to enhance accessibility to palliative care in LMICs, particularly in rural areas. Comprehensive strategies for their use are required to address the identified barriers.
Mesothelioma is a terminal disease that is linked to asbestos exposure. Continuity is difficult for GPs, and other healthcare professionals (HCPs), to provide within the current NHS primary care system, but is highly valued by people with mesothelioma.
Most palliative and end of life care (PEOLC) is provided in primary care with referral to specialist palliative care (SPC) services for patients with more complex problems. Collaboration between general practitioners (GPs) and hospices is essential to deliver patient-centred PEOLC. There is little in-depth research on the collaboration between general practice and hospice services and the variety of models and processes that currently exist.
Aims
To investigate GP experiences and perceptions of hospice care and the facilitators and limitations to SPC referral and shared care management.
Method
A GP interview study across a CCG. Semi-structured interviews were performed and a framework methodology employed.
Results
Twelve GPs participated. They described how use of hospice services is influenced by their own experience; practice expertise; perceptions of patients' needs; and relationships with the hospice. Key themes were GP factors; perceived accessibility and responsiveness of hospice services; patient and family factors, which affect referral decision-making; and effective professional relationships. GPs viewed urgent referrals or referrals for patients from ethnic minorities as most challenging. They also struggled to identify the right time to refer patients with non-malignant diagnoses. GPs uniformly preferred personal communication with clinical nurse specialists and relied on stable professional relationships suggesting that care was disrupted when CNS cover was lacking.
Conclusions
This study gives weight to the challenge of partnership working across teams of different palliative care professionals, and illustrates how professional relationships are central to effective collaboration, referral and patient management. We recommend further research into robust collaborative working and an evaluation of equity of access to services particularly for ethnic minorities. We also suggest the need for further development of contemporaneous electronic patient notes and GP education. These with stable service delivery are vital to planning future models of care and proactive service delivery.
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