Role and response of primary healthcare services in community end-of-life care during COVID-19: Qualitative study and recommendations for primary palliative care delivery.

BACKGROUND: The need for end-of-life care in the community increased significantly during the COVID-19 pandemic. Primary care services, including general practitioners and community nurses, had a critical role in providing such care, rapidly changing their working practices to meet demand. Little is known about primary care responses to a major change in place of care towards the end of life, or the implications for future end-of-life care services. AIM: To gather general practitioner and community nurse perspectives on factors that facilitated community end-of-life care during the COVID-19 pandemic, and to use this to develop recommendations to improve future delivery of end-of-life care. DESIGN: Qualitative interview study with thematic analysis, followed by refinement of themes and recommendations in consultation with an expert advisory group. PARTICIPANTS: General practitioners (n = 8) and community nurses (n = 17) working in primary care in the UK. RESULTS: General practitioner and community nurse perspectives on factors critical to sustaining community end-of-life care were identified under three themes: (1) partnership working is key, (2) care planning for end-of-life needs improvement, and (3) importance of the physical presence of primary care professionals. Drawing on participants' experiences and behaviour change theory, recommendations are proposed to improve end-of-life care in primary care. CONCLUSIONS: To sustain and embed positive change, an increased policy focus on primary care in end-of-life care is required. Targeted interventions developed during COVID-19, including online team meetings and education, new prescribing systems and unified guidance, could increase capacity and capability of the primary care workforce to deliver community end-of-life care.

Improving palliative care in Scottish acute hospitals – a three strand approach

BackgroundHospitals remain an important and necessary place of care for people nearing the end of their lives, and in Scotland nearly 1 in 3 hospital beds are occupied by someone who will die within the next 12 months (Clark, Armstrong, Allan, et al., 2014. Palliat Med. 28:474). Despite this, resources to support improvement activity across the country remain underdeveloped and ad hoc.AimBuilding on the Best (Phase 2) a three-year, Macmillan funded project aimed to improve the experiences and outcomes for patients and families in Scotland’s hospitals.MethodsWe:Created a multidisciplinary national network for hospital specialist palliative care team (HSPCT) members.Supported a range of quality improvement projects across the country.Facilitated public engagement via the projects and other stakeholders.ResultsThe Scottish Network for Acute Palliative Care (SNAPC) was launched in Jan 2020. It facilitated the HSPCTs across Scotland to work very effectively and efficiently to collaborate and contribute to the development of COVID-19 specific palliative care guidelines;share local work nationally;and develop new collaborative connections.9/12 QI projects successfully completed in six health boards showing local improvements to the care being offered to patients and their families specifically in planning ahead and bereavement care.Public engagement activities included participation in focus groups to develop resources for introducing the ReSPECT document and feedback on bereavement follow up.ConclusionsThe successes and limitations of this project were defined by the pandemic. While the SNAPC network flourished and developed as a need for information and sharing experiences with colleagues was required, barriers to engaging with the public restricted engagement activities. A sense of urgency amongst HSPCT to improve care, an infrastructure to support information sharing and collaboration and resource to support small projects has led to impactful change in the care experiences in several hospital settings across Scotland.

Risk factors for complicated grief among family members bereaved in intensive care unit settings: A systematic review.

BACKGROUND: Families of intensive care unit (ICU) decedents are at increased risk of experiencing complicated grief. However, factors associated with complicated grief in ICU and bereavement needs assessment are not available routinely. We aimed to conduct a systematic review identifying risk factors associated with complicated grief among family members of ICU decedents. MATERIALS AND METHODS: MEDLINE, EMBASE, CINAHL, PsycINFO, the Cochrane Library and Web of Science were searched to identify relevant articles. Observational studies and randomised and non-randomised controlled trials were included. Studies were screened and quality appraised in duplicate. Risk of bias was assessed using Newcastle-Ottawa Scale. A narrative synthesis was undertaken. RESULTS: Seven studies conducted across three continents were eligible. Four studies were of high quality. 61 risk factors were investigated across the studies. Factors associated with a decreased risk of complicated grief included age, patient declining treatment and involvement in decision-making. Factors associated with increased risk included living alone, partner, dying while intubated, problematic communication, and not having the opportunity to say goodbye. CONCLUSION: This systematic review has identified risk factors which may help identify family members at increased risk of complicated grief. Many of the studies has small sample sizes increasing the risk of erroneously reporting no effect due to type II error. Some factors are specific to the ICU setting and are potentially modifiable. Bereavement services tailored to the needs of bereaved family members in ICU settings are required. (PROSPERO registration ID 209503).

Service change and innovation in community end-of-life care during the COVID-19 pandemic: Qualitative analysis of a nationwide primary care survey.

BACKGROUND: Primary healthcare teams (general practice and community nursing services) within the United Kingdom provided the majority of community end-of-life care during COVID-19, alongside specialist palliative care services. As international healthcare systems move to a period of restoration following the first phases of the pandemic, the impact of rapidly-implemented service changes and innovations across primary and specialist palliative care services must be understood. AIM: To provide detailed insights and understanding into service changes and innovation that occurred in UK primary care to deliver end-of-life care during the first phase of the COVID-19 pandemic. DESIGN: Cross-sectional online survey. Responses were analysed using descriptive statistics and thematic analysis. SETTING/PARTICIPANTS: United Kingdom survey of general practitioners and community nurses, circulated via regional and national professional networks. RESULTS: A total of 559 valid responses were received from 387 community nurses, 156 general practitioners and 16 'other'. Over a third of respondents (n = 224; 40.8%) experienced changes in the organisation of their team in order to provide end-of-life care in response to the COVID-19 pandemic. Three qualitative themes were identified: COVID-19 as a catalyst for change in primary palliative care; new opportunities for more responsive and technological ways of working; and pandemic factors that improved and strengthened interprofessional collaboration. CONCLUSION: Opportunity has arisen to incorporate cross-boundary service changes and innovations, implemented rapidly at the time of crisis, into future service delivery. Future research should focus on which service changes and innovations provide the most benefits, who for and how, within the context of increased patient need and complexity.

Community end-of-life care during the COVID-19 pandemic: findings of a UK primary care survey.

BACKGROUND: Thousands of people in the UK have required end-of-life care in the community during the COVID-19 pandemic. Primary healthcare teams (general practice and community nursing services) have provided the majority of this care, alongside specialist colleagues. There is a need to learn from this experience in order to inform future service delivery and planning. AIM: To understand the views of GPs and community nurses providing end-of-life care during the first wave of the COVID-19 pandemic. DESIGN & SETTING: A web-based, UK-wide questionnaire survey circulated via professional general practice and community nursing networks, during September and October 2020. METHOD: Responses were analysed using descriptive statistics and an inductive thematic analysis. RESULTS: Valid responses were received from 559 individuals (387 community nurses, 156 GPs, and 16 unspecified roles), from all regions of the UK. The majority reported increased involvement in providing community end-of-life care. Contrasting and potentially conflicting roles emerged between GPs and community nurses. There was increased use of remote consultations, particularly by GPs. Community nurses took greater responsibility in most aspects of end-of-life care practice, particularly face-to-face care, but reported feeling isolated. For some GPs and community nurses, there has been considerable emotional distress. CONCLUSION: Primary healthcare services are playing a critical role in meeting increased need for end-of-life care in the community during the COVID-19 pandemic. They have adapted rapidly, but the significant emotional impact, especially for community nurses, needs addressing alongside rebuilding trusting and supportive team dynamics.

'COVID-19 and palliative medicine: faith-based hospitals in India'.

OBJECTIVES: Faith-based organisations (FBOs) in India provide health services particularly to marginalised communities. We studied their preparedness and delivery of palliative care during COVID-19 as part of a mixed-method study. We present the results of an online questionnaire. METHODS: All FBOs providing palliative care in India were invited to complete an online questionnaire. Descriptive analysis was undertaken. RESULTS: Response rate was 46/64 (72%); 44 provided palliative care; 30/44 (68%) were in rural or semiurban areas with 10-2700 beds. Fifty-two per cent (23/44) had dedicated palliative care teams and 30/44 (68%) provided it as part of general services; 17/44 (39%) provided both. 29/44 (66%) provided palliative care for cancer patients; 17/44 (34%) reported that this was more than half their workload.The pandemic led to reduced clinical work: hospital 36/44 (82%) and community 40/44 (91%); with reduction in hospital income for 41/44 (93%). 18/44 (44%) were designated government COVID-19 centres; 11/40 (32%) had admitted between 1 and 2230 COVID-19 patients.COVID-19 brought challenges: 14/44 (32%) lacked personal protective equipment; 21/44 (48%) had reduced hospital supplies and 19/44 (43%) lacked key medications including morphine. 29/44 (66%) reported reduction in palliative care work; 7/44 (16%) had stopped altogether. Twenty-three per cent (10/44) reported redeployment of palliative care teams to other work. For those providing, palliative care 32/37 (86%) was principally for non-COVID patients; 13/37 (35%) cared for COVID-19 patients. Service adaptations included: teleconsultation, triaged home visits, medication delivery at home and food supply. CONCLUSIONS: FBOs in India providing palliative care had continued to do so despite multiple challenges. Services were adapted to enable ongoing patient care. Further research is exploring the effects of COVID-19 in greater depth.

5 Primary care delivers palliative care during COVID-19: a national UK survey of GP’s and community nurses

BackgroundRapid, dramatic changes in primary healthcare services occurred during the COVID-19 pandemic. More palliative and end-of-life care (PEOLC) in the community and care homes needed delivered in new ways. This study sought General Practitioner (GP) and community nursing views about changes related to PEOLC during the COVID-19 pandemic.MethodsA national online survey was developed from current literature, patient, public and key stakeholder involvement and disseminated to GPs and community nurses between 01.09.2020 and 16.10.2020. Fixed response and open free text questions addressed demographics, PEOLC provision, changes, challenges and exemplars of good practice.ResultsThere were 559 responses (387 (71.3%) community nurses;156 (28.7%) GPs;6 ‘role not specified’) from all UK countries. Over half (296, 53.1%) cared for patients dying with ‘confirmed’ COVID-19 and provided PEOLC ‘a lot more’ or ‘a bit more than usual’ to non-COVID patients (322, 58.2%).All respondents reported increased need to provide family support (339, 60.9% providing ‘a lot’/’a bit more than usual’);a larger proportion of community nurses (252, 66.0%) reported this role change compared with doctors (75, 48.1%, p=0.01). Over forty percent of all respondents reported they were undertaking more advance care planning (266, 53.0%), anticipatory prescribing (227, 56.4%), symptom management (275, 51.1%), death verification (222, 47.8%) and bereavement support (237, 44.6%). Over three-quarters (211, 77.0%) of community nurses had conducted ‘more’/‘a lot more’ face-to-face visits, whereas 53 (34.0%) of GPs had done ‘less’ or ‘a lot less’ (<0.0001).Qualitative free-text themes relate to increasing end-of-life care workload;changing roles and models of consultation;and emotional impact.ConclusionsContrasting and potentially conflicting roles emerged between GPs and community nurses concerning their response to the increased demand and complexity of PEOLC during the pandemic. The significant emotional impact, especially for community nurses, needs addressing alongside rebuilding trusting and supportive team dynamics.