PP07.002 The impact of advance care planning on place of death during the COVID-19 pandemic

BackgroundAt the beginning on the COVID-19 pandemic, advance care planning (ACP) was widely encouraged and endorsed for adults with serious illness to ensure their treatment and care preferences would be honoured, including location of death, often considered a surrogate quality indicator for end-of-life care. Coordinate My Care (CMC) represents the UK's largest Electronic Palliative Care Coordination System that comprises an ACP component.We aimed to examine the impact of ACP on place of death for people who died during the COVID-19 pandemic with a CMC record.MethodsRetrospective cohort analysis of CMC records for people aged over 18 who died between 20/03/20 and 05/03/21 with recorded place of death. Socio-demographic, clinical and ACP-related factors associated with achieving preferred place of death (PPD) were examined using logistic regression.Results11,913 records were included. 76.9% patients died in their preferred place location of death (57.7% Home, 31.4% Care Home, 7.5% Hospice, 3.3% Hospital, 0.1% Other). An increased likelihood of dying in PPD was associated with a ‘Not for resuscitation' (DNACPR) status (OR=1.51, 95% CI 1.17 to 1.93), a Ceiling of Treatment for Symptomatic Treatment (when compared to Full active treatment, OR=3.52, 95% CI 2.77 to 4.50), documented family discussions regarding resuscitation recommendations (OR=1.51, 95% CI 1.33 to 1.72) and 2+ non-urgent care record views in the 30 days before death (OR=1.27, 95% CI 1.13 to 1.43). People from materially deprived areas had a decreased likelihood of dying in their PPD (OR= 0.65, 95% CI 0.54 to 0.79).ConclusionsModifiable elements of ACP significantly influence place of death, even when controlling for socio-economic and demographic determinants. In times of crisis, effective ACP is central to delivering high quality end-of-life care;ACP related factors must be considered in ongoing research on end-of-life outcomes.

BOS4c.003 Advance care plans: creation, content and use during wave 1 of the COVID-19 pandemic

BackgroundMortality forecasts associated with COVID-19 stressed a need to prepare adults with advanced disease for possible severe illness and engage with Advance Care Planning (ACP). We aimed to examine ACP engagement and activity during the COVID-19 pandemic.MethodsA retrospective cohort study, comparing the creation, content and use of Coordinate My Care (CMC) records in London prior to and during the onset of COVID-19. Records for people aged 18+, created and published in pre-pandemic period (2018–2019) and ‘wave 1' (W1) of COVID-19 (20/03/20–04/07/20) were extracted. Demographics, ACP-related content and the use of CMC records created were analysed and compared using descriptive statistics.Results56,343 records were included, 35,108 from the pre-pandemic period and 21,235 records from W1. The average records created each week rose by 296.9% (P<0.005) in W1. There were fewer records in W1 for those aged 80 years (60.8% vs 64.9% pre-pandemic, P<0.005) and who had WHO performance status 4 (34.8% vs 44.2% pre pandemic, P<0.005). More people who created records during W1 had an estimated prognosis of 1 year+ (73.3% vs 53.0% pre-pandemic, P<0.005), were ‘For Resuscitation' (38.2% vs 29.8% pre-pandemic, P<0.005) and had a Treatment Ceiling of ‘Full Active Treatment' (32.4% vs 25.7%, P<0.005). More people in W1 listed hospital as their preferred place of care (PPC) and preferred place of death (PPD) (PPC: 13.3% vs 5.8% pre-pandemic, P<0.005. PPD: 14.0% vs 7.9%, P<0.005). Average monthly non-urgent and urgent record views rose by 320.3% (P=0.02) and 154.3% (P=0.01) in W1.ConclusionsA large uptake in engagement with ACP is demonstrated during the 1st wave of the pandemic. An increase in use among younger, more independent patients with longer prognoses, with a higher preference for hospital care creating records in W1 compared to before the pandemic, suggests heightened awareness and provision of ACP at this time.

Newspaper coverage of advance care planning during the COVID-19 pandemic: Content analysis.

COVID-19 may cause sudden serious illness, and relatives having to act on patients' behalf, emphasizing the relevance of advance care planning (ACP). We explored how ACP was portrayed in newspapers during year one of the pandemic. In 'LexisNexis Uni', we identified English-language newspaper articles about ACP and COVID-19, published January-November 2020. We applied content analysis; unitizing, sampling, recording or coding, reducing, inferring, and narrating the data. We identified 131 articles, published in UK (n = 59), Canada (n = 32), US (n = 15), Australia (n = 14), Ireland (n = 6), and one each from Israel, Uganda, India, New-Zealand, and France. Forty articles (31%) included definitions of ACP. Most mentioned exploring (93%), discussing (71%), and recording (72%) treatment preferences; 28% described exploration of values/goals, 66% encouraged engaging in ACP. No false or sensationalist information about ACP was provided. ACP was often not fully described. Public campaigns about ACP might improve the full picture of ACP to the public.

"I wanna live and not think about the future" what place for advance care planning for people living with severe multiple sclerosis and their families? A qualitative study.

BACKGROUND: Little is known about how people with multiple sclerosis (MS) and their families comprehend advance care planning (ACP) and its relevance in their lives. AIM: To explore under what situations, with whom, how, and why do people with MS and their families engage in ACP. METHODS: We conducted a qualitative study comprising interviews with people living with MS and their families followed by an ethical discussion group with five health professionals representing specialties working with people affected by MS and their families. Twenty-seven people with MS and 17 family members were interviewed between June 2019 and March 2020. Interviews and the ethical discussion group were audio-recorded and transcribed verbatim. Data were analysed using the framework approach. RESULTS: Participants' narratives focused on three major themes: (i) planning for an uncertain future; (ii) perceived obstacles to engaging in ACP that included uncertainty concerning MS disease progression, negative previous experiences of ACP discussions and prioritising symptom management over future planning; (iii) Preferences for engagement in ACP included a trusting relationship with a health professional and that information then be shared across services. Health professionals' accounts from the ethical discussion group departed from viewing ACP as a formal document to that of an ongoing process of seeking preferences and values. They voiced similar concerns to people with MS about uncertainty and when to initiate ACP-related discussions. Some shared concerns of their lack of confidence when having these discussions. CONCLUSION: These findings support the need for a whole system strategic approach where information about the potential benefits of ACP in all its forms can be shared with people with MS. Moreover, they highlight the need for health professionals to be skilled and trained in engaging in ACP discussions and where information is contemporaneously and seamlessly shared across services.

Advance care plans: creation, content and use during wave 1 of the COVID-19 pandemic. an analysis of data from coordinate my care, a large electronic palliative care coordination system

BackgroundMortality predictions as the COVID-19 pandemic began highlighted a need to prepare adults for possible severe illness, encouraging engagement with Advance Care Planning (ACP).AimTo explore ACP activity and engagement during the COVID-19 pandemic.MethodsA retrospective cohort study, comparing the creation, content and use of Coordinate My Care (CMC) records, the Electronic Palliative Care Co-ordination System in London, during and prior to the onset of COVID-19. Records for patients aged 18+, created and published in the pre-pandemic period (2018–2019) and ‘wave 1’ (W1) of COVID-19 (20/03/20–04/07/20) were included. Demographics, the ACP-related content, and the use of CMC records created were compared using descriptive statistics.Results56,343 records were included (35,108 pre-pandemic period and 21,235 W1). During W1, the mean records created each week increased by 296.9% (P<0.005). More people creating records at this time were aged below 80 (39.9% vs 35.1% pre-pandemic, P<0.005) and had WHO performance status 0–1 (17.7% vs 11.63% pre pandemic, P<0.005). Less people who created records during W1 had an estimated prognosis of days - weeks (9.0% vs 16.7% pre-pandemic, P<0.005), were ‘Not For Resuscitation’ (61.8% vs 70.3% pre-pandemic, P<0.005) and had a Ceiling of Treatment of ‘Symptomatic Treatment Only’ (8.1% vs 14.0%, P<0.005). More patients in W1 listed hospital as their preferred place of care (PPC) and preferred place of death (PPD) (PPC: 13.3% vs 5.8% pre-pandemic, P<0.005. PPD: 14.0% vs 7.9%, P<0.005). Average monthly non-urgent and urgent record views rose by 320.3% (P=0.02) and 154.3% (P=0.01) in W1.ConclusionA marked increase in ACP activity is shown during wave 1 of the pandemic. Amplified engagement, provision and awareness at this time is suggested by increased use among younger, more independent patients with longer prognoses and a higher preference for hospital care creating records in W1 compared to before the pandemic.

Patient and public involvement in research during the COVID-19 the pandemic;an evaluation of a retrospective big data palliative care cohort study

IntroductionPatient and Public involvement (PPI) is essential to ensure research is relevant, patient-focused and of high quality. Social distancing recommendations during the COVID-19 pandemic affected how PPI members engaged with research teams.AimsTo describe and evaluate PPI in a retrospective study evaluating 73,675 advance care planning records within a large Electronic Palliative Care Coordination System, Coordinate My Care, conducted during the COVID-19 pandemic.MethodPPI was evaluated against each of the six UK Standards for Public Involvement.ResultsInclusive Opportunities: The project was presented to the Patient, Public and Carers Research Review Panel of the Royal Marsden (PPCRRP) at its conception. Three members offered their involvement and continued as co-investigators throughout the project. The study was supported by a National Institute for Health Research grant.Working Together: Following COVID-19 restrictions, meetings were held virtually. While this enhanced accessibility, some important aspects of working together in person were diminished. PPI helped shape the study design, research applications, data interpretation and dissemination of findings at conferences and in journal publications.Support and learning: The PPCRRP provided a supportive and educational infrastructure for our PPI members. Potential knowledge gaps were anticipated with appropriate teaching within discussions. Conversations about end-of-life care were sensitively managed.Communication: Regular communication and engagement in plain language were maintained throughout the research by email and during virtual meetings.Governance: Strong PPI presence in research committees within the organisation.ConclusionImpact, lessons learned and conclusions: PPI enhanced the relevance, patient-centeredness and quality of this study reinforcing the important contribution of PPI within palliative care research. Social distancing constraints meant involvement was entirely virtual enabling increased access. The emotive subject matter that is frequently discussed in palliative research was addressed safely and sensitively. PPI can continue in a virtual sphere;further work is needed to evaluate PPI experience and ensure appropriate support is available.

Specialist palliative care services response to ethnic minority groups with COVID-19: equal but inequitable-an observational study.

OBJECTIVES: To develop insights into response of palliative care services caring for people from ethnic minority groups during COVID-19. METHODS: Cross-sectional online survey of UK palliative care services response to COVID-19. Quantitative data were summarised descriptively and χ2 tests used to explore relationships between categorical variables. Free text comments were analysed using reflexive thematic analysis. RESULTS: 277 UK services responded. 168 included hospice teams (76% of all UK hospice teams). Services supporting those from ethnic minority groups were more likely to include hospital (p<0.001) and less likely to include hospice (p<0.001) or home care teams (p=0.008). 34% (93/277) of services had cared for patients with COVID-19 or families from ethnic minority groups. 66% (61/93) of these services stated no difference in how they supported or reached these groups during the pandemic.Three themes demonstrated impact of policy introduced during the pandemic, including: disproportionate adverse impact of restricted visiting, compounded communication challenges and unmet religious and faith needs. One theme demonstrated mistrust of services by ethnic minority groups, and the final theme demonstrated a focus on equal and individualised care. CONCLUSIONS: Policies introduced during the COVID-19 pandemic may have adversely impacted those from ethnic minority groups making these at-risk populations even more vulnerable. The palliative care response may have been equal but inequitable. During the para-COVID-19 period, systemic steps, including equality impact assessments, are urgently needed.

Bereavement Support on the Frontline of COVID-19: Recommendations for Hospital Clinicians.

Deaths due to COVID-19 are associated with risk factors which can lead to prolonged grief disorder, post-traumatic stress, and other poor bereavement outcomes among relatives, as well as moral injury and distress in frontline staff. Here we review relevant research evidence and provide evidence-based recommendations and resources for hospital clinicians to mitigate poor bereavement outcomes and support staff. For relatives, bereavement risk factors include dying in an intensive care unit, severe breathlessness, patient isolation or restricted access, significant patient and family emotional distress, and disruption to relatives' social support networks. Recommendations include advance care planning; proactive, sensitive, and regular communication with family members alongside accurate information provision; enabling family members to say goodbye in person where possible; supporting virtual communication; providing excellent symptom management and emotional and spiritual support; and providing and/or sign-posting to bereavement services. To mitigate effects of this emotionally challenging work on staff, we recommend an organizational and systemic approach which includes access to informal and professional support.