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Supplemental material, sj-pdf-1-pmj-10.1177_02692163231167212 for Deaths at home, area-based deprivation and the effect of the Covid-19 pandemic: An analysis of mortality data across four nations by Javiera Leniz, Joanna M Davies, Anna E Bone, Mevhibe Hocaoglu, Julia Verne, Stephen Barclay, Fliss E M Murtagh, Lorna K Fraser, Irene J Higginson and Katherine E Sleeman in Palliative Medicine

Peer reviewed: True, Acknowledgements: We are grateful to Lori Bourke for assistance with qualitative interviews and data management., IntroductionLittle consideration has been given to how the provision of palliative and end-of-life care in care homes was affected by COVID-19. The aims of this study were to: (i) investigate the response of UK care homes in meeting the rapidly increasing need for palliative and end-of-life care during the COVID-19 pandemic and (ii) propose policy recommendations for strengthening the provision of palliative and end-of-life care within care homes.Materials and methodsA mixed methods observational study was conducted, which incorporated (i) an online cross-sectional survey of UK care homes and (ii) qualitative interviews with care home practitioners. Participants for the survey were recruited between April and September 2021. Survey participants indicating availability to participate in an interview were recruited using a purposive sampling approach between June and October 2021. Data were integrated through analytic triangulation in which we sought areas of convergence, divergence, and complementarity.ResultsThere were 107 responses to the survey and 27 interviews. We found that (i) relationship-centered care is crucial to high-quality palliative and end-of-life care within care homes, but this was disrupted during the pandemic. (ii) Care homes' ability to maintain high-quality relationship-centered care required key “pillars” being in place: integration with external healthcare systems, digital inclusion, and a supported workforce. Inequities within the care home sector meant that in some services these pillars were compromised, and relationship-centered care suffered. (iii) The provision of relationship-centered care was undermined by care home staff feeling that their efforts and expertise in delivering palliative and end-of-life care often went unrecognized/undervalued.ConclusionRelationship-centered care is a key component of high-quality palliative and end-of-life care in care homes, but this was disrupted during the COVID-19 pandemic. We identify key policy priorities to equip care homes with the resources, capacity, and expertise needed to deliver palliative and end-of-life care: (i) integration within health and social care systems, (ii) digital inclusivity, (iii) workforce development, (iv) support for care home managers, and (v) addressing (dis)parities of esteem. These policy recommendations inform, extend, and align with policies and initiatives within the UK and internationally.

Background: The number and proportion of home deaths in the UK increased during the Covid-19 pandemic. It is not known whether these changes were experienced disproportionately by people from different socioeconomic groups. Aim: To examine the association between home death and socioeconomic position during the Covid-19 pandemic, and how this changed between 2019 and 2020. Design: Retrospective cohort study using population-based individual-level mortality data. Setting/participants: All registered deaths in England, Wales, Scotland and Northern Ireland. The proportion of home deaths between 28th March and 31st December 2020 was compared with the same period in 2019. We used Poisson regression models to evaluate the association between decedent’s area-based level of deprivation and risk of home death, as well as the interaction between deprivation and year of death, for each nation separately. Results: Between the 28th March and 31st December 2020, 409,718 deaths were recorded in England, 46,372 in Scotland, 26,410 in Wales and 13,404 in Northern Ireland. All four nations showed an increase in the adjusted proportion of home deaths between 2019 and 2020, ranging from 21 to 28%. This increase was lowest for people living in the most deprived areas in all nations, with evidence of a deprivation gradient in England. Conclusions: The Covid-19 pandemic exacerbated a previously described socioeconomic inequality in place of death in the UK. Further research to understand the reasons for this change and if this inequality has been sustained is needed.

CONTEXT: Managing activities of daily living is important to people with advanced cancer or chronic obstructive pulmonary disease (COPD). Understanding disability in activities of daily living may inform service planning. OBJECTIVE: To identify the prevalence of disability in activities of daily living, associations and change over time, in older people with advanced cancer or COPD. METHODS: Secondary analysis of International Access, Rights and Empowerment (IARE) studies in adults aged ≥65 years with advanced disease in the United Kingdom, Ireland, and United States, using cross-sectional (IARE I & II) and longitudinal (IARE II, 3 timepoints over 6 months) data. Measures included disability in activities of daily living (Barthel Index), symptom severity (Palliative Outcome Scale), and assistive device use (self-reported). Logistic regression was used to identify relationships between disability and age, sex, living alone, diagnosis, and symptom burden; visual graphical analysis explores individual disability trajectories. RESULTS: One hundred fifty-nine participants were included (140 cancer, 19 COPD). Sixty-five percent had difficulty climbing stairs, 48% bathing, 39% dressing, and 36% mobilizing. Increased disability was independently associated with increased symptom burden (odds ratio, 1.08 [95% CI:1.02-1.15], P = 0.01) and walking unaided (z = 2.35, P = 0.02), but not with primary diagnosis (z = -0.47, P = 0.64). Disability generally increased over time but with wide interindividual variation. CONCLUSION: Disability in activities of daily living in advanced cancer or COPD is common, associated with increased symptom burden, and may be attenuated by use of assistive devices. Individual disability trajectories vary widely, with diverse disability profiles. Services should include rehabilitative interventions, guided by disability in individual activities of daily living.

Supplemental material, sj-pdf-1-pmj-10.1177_02692163211040981 for Changes in mortality patterns and place of death during the COVID-19 pandemic: A descriptive analysis of mortality data across four nations by Sean B O’Donnell, Anna E Bone, Anne M Finucane, Jenny McAleese, Irene J Higginson, Stephen Barclay, Katherine E Sleeman and Fliss EM Murtagh in Palliative Medicine

Supplemental material, Supplementary_material_R1 for Changing patterns of mortality during the COVID-19 pandemic: Population-based modelling to understand palliative care implications by Anna E Bone, Anne M Finucane, Javiera Leniz, Irene J Higginson and Katherine E Sleeman in Palliative Medicine

OBJECTIVES: To determine and explore the influences on care preferences of older people with advanced illness and integrate our results into a model to guide practice and research. DESIGN: Systematic review using Medline, Embase, PsychINFO, Web of Science, and OpenGrey databases from inception to February 2017 and reference and citation list searching. Included articles investigated influences on care preference using qualitative or quantitative methodology. Thematic synthesis of qualitative articles and narrative synthesis of quantitative articles were undertaken. SETTING: Hospital and community care settings. PARTICIPANTS: Older adults with advanced illness, including people with specific illnesses and markers of advanced disease, populations identified as in the last year of life, or individuals receiving palliative care (N = 15,164). MEASUREMENTS: The QualSys criteria were used to assess study quality. RESULTS: Of 12,142 search results, 57 articles were included. Family and care context, illness, and individual factors interact to influence care preferences. Support from and burden on family and loved ones were prominent influences on care preferences. Mechanisms by which preferences are influenced include the process of trading-off between competing priorities, making choices based on expected outcome, level of engagement, and individual ability to form and express preferences. CONCLUSION: Family is particularly important as an influence on care preferences, which are influenced by complex interaction of family, individual, and illness factors. To support preferences, clinicians should consider older people with illnesses and their families together as a unit of care.