Primary palliative care research: opportunities and challenges.

INTRODUCTION: Primary care has a central role in palliative and end of life care: 45.6% of deaths in England and Wales occur under the care of primary care teams at home or in care homes. The Community Care Pathways at the End of Life (CAPE) study investigated primary care provided for patients in the final 6 months of life. This paper highlights the opportunities and challenges associated with primary palliative care research in the UK, describing the methodological, ethical, logistical and gatekeeping challenges encountered in the CAPE study and how these were addressed. THE STUDY METHODS: Using a mixed-methods approach, quantitative data were extracted from the general practitioner (GP) and district nurse (DN) records of 400 recently deceased patients in 20 GP practices in the East of England. Focus groups were conducted with some GPs and DNs, and individual interviews held with bereaved carers and other GPs and DNs. THE CHALLENGES ADDRESSED: Considerable difficulties were encountered with ethical permissions, with GP, DN and bereaved carer recruitment and both quantitative and qualitative data collection. These were overcome with flexibility of approach, perseverance of the research team and strong user group support. This enabled completion of the study which generated a unique primary palliative care data set.National Institute for Health Research (NIHR) Research for Patient Benefit Programme. National Institute for Health Research (NIHR) School for Primary Care Research (SPCR). National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) East of Englan

‘A silent epidemic of grief’: a survey of bereavement care provision in the UK and Ireland during the COVID-19 pandemic

Objectives: To investigate the experiences and views of practitioners in the UK and Ireland concerning changes in bereavement care during the COVID-19 pandemic. Design: Online survey using a snowball sampling approach. Setting: Practitioners working in hospitals, hospices, care homes and community settings across the UK and Ireland. Participants: Health and social care professionals involved in bereavement support. Interventions: Brief online survey distributed widely across health and social care organisations. Results: 805 respondents working in hospice, community, and hospital settings across the UK and Ireland completed the survey between 3 August and 4 September 2020. Changes to bereavement care practice were reported in: the use of telephone, video and other forms of remote support (90%); supporting people bereaved from non-COVID conditions (76%), from COVID-19 (65%) and people bereaved before the pandemic (61%); funeral arrangements (61%); identifying bereaved people who might need support (56%); managing complex forms of grief (48%) and access to specialist services (41%). Free-text responses demonstrated the complexities and scale of the impact on health and social care services, practitioners and their relationships with bereaved families, and on bereaved people. Conclusions: The pandemic has created major challenges for the support of bereaved people: increased needs for bereavement care, transition to remote forms of support and the stresses experienced by practitioners, among others. The extent to which services are able to adapt, meet the escalating level of need and help to prevent a ‘tsunami of grief’ remains to be seen. The pandemic has highlighted the need for bereavement care to be considered an integral part of health and social care provision

Clinicians' Views of Educational Interventions for Carers of Patients With Breathlessness Due to Advanced Disease: Findings From an Online Survey.

CONTEXT: Carers' needs in advanced disease, and specifically in relation to breathlessness, are well evidenced. Publications on educational interventions for carers of patients with advanced disease that focus on symptoms are scarce and absent for breathlessness. OBJECTIVES: To establish current education provided by clinicians for carers of patients with breathlessness in advanced disease, views about educating carers about breathlessness, and relevant outcomes for a future randomized controlled trial of an educational intervention for carers. METHODS: An online survey was completed by 365 clinicians: medical, nursing, and allied health professionals from primary care, hospital, and hospice. Descriptive statistics summarized respondent characteristics and survey responses, and the Chi-squared test was applied. Content analysis of free-text comments was conducted. RESULTS: Most clinicians reported educating carers by educating patients at clinical contacts with patients. Carer involvement was largely an 'add-on'; an active carer education strategy, where all carers were invited to attend, was not currently apparent. Clinicians endorsed the importance of educating carers about breathlessness through increasing carer confidence and/or control, helping patients' better self-manage breathlessness and potentially reducing admissions. Joint education with patients, giving practical advice, and strategies for helping patients were advised. To inform a future trial, clinicians identified improvement in patient outcomes, particularly patient quality of life as very important in enhancing clinician adoption of an educational intervention for carers. CONCLUSION: This survey revealed an appetite among clinicians for an educational intervention for carers of patients with breathlessness in advanced disease and provided important insights to underpin a future Phase II randomized controlled trial.This study was supported by a research grant from Dimbleby Cancer Care. RM is supported by the Cambridge NIHR Biomedical Research Unit

Implementing patient-centred outcome measures in palliative care clinical practice for adults (IMPCOM): Protocol for an update systematic review of facilitators and barriers

Background: Despite the development of patient-centred or patient-reported outcome measures (PCOMs or PROMs) in palliative and end-of-life care over recent years, their routine use in practice faces continuing challenges. Objective: To update a highly cited literature review, identify and synthesise new evidence on facilitators, barriers, lessons learned, PCOMs used, models of implementation, implementation outcomes, costs, and consequences of implementing PCOMs in palliative care clinical practice. Methods: We will search MEDLINE, PsycINFO, CINAHL, Embase, Emcare, SCI-Expanded, SSCI, ESCI, and BNI. The database search will be supplemented by a list of studies from the expert advisory committee, hand-searching of reference lists for included articles, and citations of the original review. We will include primary studies using a PCOM during clinical care of adult patients with advanced disease in palliative care settings and extract data on reported models of implementation, PCOMs, facilitators, barriers, lessons learned, costs, and implementation outcomes. Gough’s Weight of Evidence Framework will be used to assess the robustness and relevance of the studies. We will narratively synthesise and tabulate the findings. This review will follow PRISMA, PRISMA-Abstract, PRISMA-P, and PRISMA-Search as the reporting guidelines. Source of funding: Marie Curie. The funder is not involved in designing or conducting this study. Protocol registration: CRD42023398653 (13/02/2023

Patient and public involvement in general practice research.

Patient and public involvement (PPI) in research has become expected practice by funders and Research Ethics Committees. (1-3) Working with the public contributors from the outset in designing and undertaking patient-related research helps ensure that the focus is relevant to and grounded in their lived experiences. (4) Despite sustained UK research policy advocating the importance of PPI, (3) public contributions are often absent or minimal in reports of primary care research. (5) In this patient perspectives edition of BJGP only two papers report on public contributions to the design and execution of the research.NIHR School for Primary Care Research NIHR ARC East of Englan

Unintended consequences of rapid changes in community palliative care practice

Community palliative care delivery is changing dramatically in response to the Covid-19 pandemic, especially in several of the worst affected countries. (1, 2) In the UK, phone and video end-of-life consultations have been widely adopted by GPs and palliative care teams (2, 3) alongside ‘virtual’ care home ward rounds, nurse verification of death and remote death verification and after-death care. Prescribing of end-of-life-care drugs is changing: family caregivers are being encouraged to assume greater involvement in administering medicines, including giving injections. This is a big ask, even when they are well supported and feel able to do so. (2) Care has been radically overhauled in anticipation of a rapid rise in demand for community end of life care (4) that may materialise during the coming months.BB is funded by the National Institute for Health Research (NIHR) School for Primary Care Research. BA and SB are supported by the NIHR Applied Research Collaboration East of England (ARC EoE) programme. IJH is an NIHR Senior Investigator (Emeritus) and is supported by the NIHR Applied Research Collaboration South London (ARC SL) programm

Reassessing advance care planning in the light of covid-19 Focus on creating a shared narrative not recording choices

Compared to younger people, older people and those with frailty are more likely to die from acute infections, such as COVID-19, and less likely to survive intensive care. This has prompted calls internationally for advance care planning (ACP) in these vulnerable populations, focusing on documenting individuals’ preferences for resuscitation and hospital admission. We suggest that the benefits of ACP derive more from its process than from the plans it produces and that recognition of this is essential for optimum care provision for patients and their families. Moreover, we argue that an over-emphasis on achieving individual choice, the stated purpose of ACP, may paradoxically undermine good care.SH is supported by the Addenbrooke's Charitable Trust and the Evelyn Trust. BB is funded by the National Institute for Health Research (NIHR) School for Primary Care Research. SB is supported by the National Institute for Health Research (NIHR) Applied Research Collaboration East of England

Does frailty need a new name?

In the UK, new national policy incentivises hospitals to identify patients with frailty, yet being labelled frail may be problematic. Geriatrician Sarah Hopkins and colleagues discuss why a new term could help patients to maintain their well-being, and help their clinicians care for them. The biomedical concept of frailty has been a significant advance in how we approach the care of older people: it is central to better evidenced medicine and policy.(1) In some settings, up to 80% of patients with unplanned hospital admissions are living with moderate or severe frailty.(2) Identifying frailty can help clinicians best care for such patients, keeping people living at home,(3) helping avoid iatrogenic harm,(4) and potentially reversing some aspects of frailty itself.(5

Developing an educational intervention on breathlessness in advanced disease for informal carers

Background & aim: The evidence-base for educational interventions to support informal carers and enhance their caregiving capacity is limited. Our aim was to develop an evidence-based educational intervention on breathlessness in advanced disease for carers. Method: Stage 1: Qualitative in-depth interviews with purposive sample of 25 patient-carer dyads from two disease groups (COPD and cancer) to identify educational needs and intervention preferences. Stage 2: One-day multidisciplinary workshop with 13 clinical experts to identify evidence-based content and acceptability and feasibility of potential delivery modes. Stage 3: Two half-day workshops (one COPD and one cancer) with 10 carers and seven patients to review intervention content, format, and language. Qualitative data analysis used a Framework approach. Results: Carers wanted to learn about breathlessness. Six key topics emerged from patient-carer dyad interviews: understanding breathlessness, de-escalating anxiety and panic, keeping active, living positively, managing infections (in COPD), and knowing what to expect in the future. There was wide variation in how carers wanted to learn, but written resources were less popular than face-to-face, group, video and web-based learning. Carers wanted an intervention that drew on both clinical expertise and peer-carer experience. In general, they wanted to learn with the patient. Building on these findings, the clinical expert workshop identified evidence-based content for the six topics and discussed a potential web-based platform to facilitate multiple modes of access e.g. via clinicians, established support groups, or by carers independently. Carer workshops endorsed the need for the intervention, its content and format, and refined its language and presentation style. Conclusion: Developed with carer, patient and clinician expertise this educational intervention on breathlessness has the potential to be highly relevant and acceptable to carers