Understanding patient views and experiences of the IDENTIfication of PALLiative care needs (IDENTI-Pall): a qualitative interview study protocol.

INTRODUCTION: More people are living with multimorbidity, defined as two or more long-term physical or mental health conditions. Multimorbidity is associated with poor quality of life and high treatment burden. Palliative care identification tools have been developed for use in primary care to seek out patients who could benefit from a palliative approach to their care. There has been little evaluative research on such tools; patient perspectives on the process of identifying their palliative care needs is a significant gap. The aim of this research is to provide new understanding into patient perspectives of the experience of having their palliative care needs identified, and the impact on their healthcare. METHODS AND ANALYSIS: This qualitative study will employ semistructured interviews to elicit the views of participants. We will purposively sample 10-12 adults with advanced serious illness who have been identified by their primary care team as having palliative care needs, and/or are receiving care from specialist palliative care services. A family member or carer may be included in an interview at the participant's request. A descriptive, thematic analysis will be carried out using the data analysis software NVivo. ETHICS AND DISSEMINATION: Ethical approval has been granted by the North of Scotland Research Ethics Committee. Study findings will be disseminated in peer-reviewed journals and through conference presentations. Other activities include the development of patient-centred outcomes for clinical practice and policy in relation to the use of palliative care identification tools. TRIAL REGISTRATION NUMBER: National Institute for Health Research (NIHR) Clinical Studies Portfolio, UK Clinical Research Network (UKCRN) Study number 51296.

Risk factors associated with poorer experiences of end-of-life care and challenges in early bereavement: Results of a national online survey of people bereaved during the COVID-19 pandemic.

BACKGROUND: Experiences of end-of-life care and early bereavement during the COVID-19 pandemic are poorly understood. AIM: To identify clinical and demographic risk factors for sub-optimal end-of-life care and pandemic-related challenges prior to death and in early bereavement, to inform clinical practice, policy and bereavement support. DESIGN: Online national survey of adults bereaved in the UK (deaths between 16 March 2020 and 2 January 2021), recruited via media, social media, national associations and organisations. SETTING/PARTICIPANTS: 711 participants, mean age 49.5 (SD 12.9, range 18-90). 628 (88.6%) were female. Mean age of the deceased was 72.2 (SD 16.1, range miscarriage to 102 years). 311 (43.8%) deaths were from confirmed/suspected COVID-19. RESULTS: Deaths in hospital/care home increased the likelihood of poorer experiences at the end of life; for example, being unable to visit or say goodbye as wanted (p < 0.001). COVID-19 was also associated with worse experiences before and after death; for example, feeling unsupported by healthcare professionals (p < 0.001), social isolation/loneliness (OR = 0.439; 95% CI: 0.261-0.739), and limited contact with relatives/friends (OR = 0.465; 95% CI: 0.254-0.852). Expected deaths were associated with a higher likelihood of positive end-of-life care experiences. The deceased being a partner or child also increased the likelihood of positive experiences, however being a bereaved partner strongly increased odds of social isolation/loneliness, for example, OR = 0.092 (95% CI: 0.028-0.297) partner versus distant family member. CONCLUSIONS: Four clear risk factors were found for poorer end-of-life care and pandemic-related challenges in bereavement: place, cause and expectedness of death, and relationship to the deceased.

General practitioners' perceptions of compassionate communities: a qualitative study.

BACKGROUND: General Practitioners (GPs) face challenges when providing palliative care, including an ageing, multimorbid population, and falling GP numbers. A 'public health palliative care' approach, defined as "working with communities to improve people's experience of death, dying and bereavement", is gaining momentum. 'Compassionate communities' is one example, with a focus on linking professional health carers with supportive community networks. Primary care is central to the approach, which has been incorporated into United Kingdom GP palliative care guidance. No research to date, however, has investigated GP perspectives of these approaches. Our aim, therefore, was to explore GP perceptions of a public health approach to palliative care, and compassionate communities. METHODS: GPs working in the United Kingdom were recruited through university teaching and research networks using snowball sampling. Purposive sampling ensured wide representation of gender, level of experience and practice populations. Semi-structured, digitally audio-recorded interviews were conducted with nine GPs. Interviews were transcribed verbatim, and thematic analysis was undertaken, informed by a qualitative descriptive methodology. Interviews continued until data saturation was reached. RESULTS: Most participants were unfamiliar with the term 'compassionate communities', but recognised examples within their practice. Three major themes with seven subthemes were identified: 1) Perceived potential of compassionate communities, including: 'maximising use of existing community services'; 'influencing health outside of healthcare'; and 'combatting taboo', 2) Perceived challenges of compassionate communities, including: 'patient safety'; 'limited capacity of the community'; 'limited capacity of general practice', and 'applicability of public health to palliative care', and 3) The role of the GP in compassionate communities. CONCLUSIONS: GPs recognised the importance of the wider community in caring for palliative care patients, however most were unfamiliar with the compassionate community approach. Participants held differing views regarding the application of the model, and the position of general practice within this. Further research into the approach's practical implementation, and exploring the views of other key stakeholders, would help establish the feasibility of compassionate communities in practice, and guide its future application.

Place and time of death in patients treated with palliative intent for oral cancer.

Information about place and time of death can help patients, carers, general medical practitioners, and multi-professional teams to put palliation for oral cancer into context, particularly the aspirations of patients about where they die. Aintree Regional Maxillofacial Unit treated 487 consecutive patients for primary oral squamous cell carcinoma between 2006 and 2010. Mortality was ascertained from the Office for National Statistics. A total of 65 (13%) patients were treated with palliative intent, and median (IQR) survival was 4.3 months (2.1-8.0). The most common reasons for palliation were inoperability (33%) and extensive disease associated with serious comorbidity (18%). A total of 22 died in hospital, 14 in a hospice, 14 in their own home, 14 in a nursing, residential, or old people's home, and one elsewhere. Most patients given palliative care do not die in hospital and survival is short. Their needs and those of their carers can be better met through integrated care that is linked to the primary sector.

Does the 'Liverpool Care Pathway' facilitate an improvement in quality of care for dying cancer patients?

BACKGROUND: The Liverpool Care Pathway for the Dying Patient (LCP) aims to transfer hospice principles of care for dying patients to other health-care sectors. This post-bereavement survey explored the LCP's effectiveness in improving quality of care for cancer patients. METHODS: Postal self-completion questionnaires were sent to 778 next-of-kin to consecutive deceased patients who had died an 'expected' cancer death in a hospice and acute tertiary hospital. RESULTS: Following exclusions (n=53), 255 of the 725 next-of-kin agreed to participate (35.2% response rate). Overall hospice participants reported the best quality of care, and hospital participants, for whom care was not supported by the LCP, reported the worst quality of care. Multivariate analysis showed the hospice was an independent predictor for patients being treated with dignity (OR 8.46) and receiving adequate family support (OR 7.18) (P<0.0001). Care supported by the LCP and the hospital specialist palliative care team were both associated with good family support, but neither was an independent predictor. CONCLUSIONS: From the bereaved relatives' perspective, within the hospital, the LCP is effective in improving specific aspects of care, such as symptom control for dying patients. Further improvement is required, however, to attain the hospice standard of care.