Search

Background: Advance care planning has been advocated as a way for people to have their wishes recorded and respected in relation to types of treatment and place of care. However, uptake in England remains low., Aims: To examine the views of older, well, adults towards Advance Care Plans (ACPs) and planning for end-of-life care, in order to inform national policy decisions., Methods: A mixed methods approach was adopted, involving individual and mini-group qualitative interviews (n = 76, ages 45-85), followed by a quantitative survey (n = 2294, age 55+). The quantitative sample was based on quotas in age, gender, region, socio-economic grade, and ethnicity, combined with light weighting to ensure the findings were representative of England., Results: Knowledge and understanding of advance care planning was low, with only 1% of survey respondents reporting they had completed an ACP for themselves. Common reasons for not putting wishes into writing were not wanting/needing to think about it now, the unpredictability of the future, trusting family/friends to make decisions, and financial resources limiting real choice., Conclusion: Whilst advance care planning is seen as a good idea in theory by older, well, adults living in the community, there is considerable reticence in practice. This raises questions over the current, national policy position in England, on the importance of written ACPs. We propose that policy should instead focus on encouraging ongoing conversations between individuals and all those (potentially) involved in their care, about what is important to them, and on ensuring there are adequate resources in community networks and health and social care systems, to be responsive to changing needs., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2024 Spear et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Background: Globally, the COVID-19 pandemic has caused unprecedented strain in healthcare systems, but little is known about how it affected patients requiring palliative and end-of-life care from GPs., Aim: To evaluate the impact of the pandemic on primary care service use in the last 3 months of life, including consultations and prescribing, and to identify associated factors., Design and Setting: A retrospective cohort study in UK, using data from the Clinical Practice Research Datalink., Method: The study cohort included those who died between 2019 and 2020. Poisson regression models using generalised estimation equations were used to examine the association between primary care use and patient characteristics. Adjusted rate ratios (aRRs) and 95% confidence intervals (95% CIs) were estimated., Results: A total of 44 534 patients died during the study period. The pandemic period was associated with an 8.9% increase in the rate of consultations from 966.4 to 1052.9 per 1000 person-months, and 14.3% longer telephone consultation duration (from 10.1 to 11.5 minutes), with a switch from face-to-face to telephone or video consultations. The prescription of end-of-life care medications increased by 6.3%, from 1313.7 to 1396.3 per 1000 person-months. The adjusted rate ratios for consultations (aRR = 1.08, 95% CI = 1.06 to 1.10, P <0.001) and prescriptions (aRR 1.05: 95% CI = 1.03 to 1.07, P <0.001) also increased during the pandemic., Conclusion: The pandemic had a major impact on GP service use, leading to longer consultations, shifts from face-to-face to telephone or video consultations, and increased prescriptions. GP workload-related issues must be addressed urgently to ease the pressure on GPs., (Copyright © 2024, The Authors.)

Background: Good end-of-life care is essential to ensure dignity and comfort in death. To our knowledge, there has not been a national population-based study in England of community prescribing of all drugs used in end-of-life care for patients with cancer., Methods: 57 632 people who died from malignant cancer in their own home or in a care home in 2017 in England were included in this study. National routinely collected data were used to examine community prescriptions dispensed for drugs for symptom control and anticipatory prescribing by key sociodemographic factors in the last 4 months of life., Results: 94% of people who died received drugs to control their symptoms and 65% received anticipatory prescribing. Prescribing increased for the symptom control drug group (53% to 75%) and the anticipatory prescribing group (4% to 52%) over the 4-month period to death., Conclusions: Most individuals who died of cancer in their own home or a care home were dispensed drugs commonly used to control symptoms at the end of life, as recommended by best-practice guidance. Lower prescribing activity was found for those who died in a care home, highlighting a potential need for improved end-of-life service planning., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2023. No commercial re-use. See rights and permissions. Published by BMJ.)

Background and Aims: The World Health Assembly recommends integration of palliative care into treatment of patients with any life-limiting condition, yet patients with non-malignant disease are less likely to receive specialist palliative care (SPC). This study compares SPC offered to patients with hepatocellular carcinoma (HCC) versus patients with chronic liver disease without HCC (CLD without HCC)., Methods: Patients who died from CLD or HCC over 5 years (2013-2017) in England were identified using a dataset linking national data on all hospital admissions (Hospital Episode Statistics - HES) with national mortality data from the Office for National Statistics (HES - ONS). The primary outcome was the proportion of patients who received inpatient SPC in their last year of life (LYOL). Secondary outcomes were (1) early inpatient SPC input and (2) the proportion dying in a hospice. The outcomes were compared between patients with HCC and CLD without HCC., Results: 29 669 patients were identified, 8143 of whom had HCC. Patients with HCC were significantly more likely to receive inpatient SPC input-adjusted OR 3.74 (95% CI 3.52-3.97) and early inpatient SPC input-adjusted OR 7.26 (95% CI 6.38-8.25) and die in a hospice OR 8.23 (95% CI 7.33-9.24) than patients with CLD without HCC., Conclusions: These data highlight the stark inequity in access to SPC services between patients with HCC and patients with CLD without HCC in England. Addressing these inequities will improve end-of-life care for patients with CLD., (© 2023 The Authors. Liver International published by John Wiley & Sons Ltd.)

Introduction: Liver disease deaths are rising, but specialist palliative care services for hepatology are limited. Expansion across the NHS is required., Methods: We surveyed clinicians, patients and carers to design an 'ideal' service. Using standard NHS tariffs, we calculated the cost of this service. In hospitals where specialist palliative care was available for liver disease, patient-level costs and bed utilisation in last year of life (LYOL) were compared between those seen by specialist palliative care before death and those not., Results: The 'ideal' service was described. Costs were calculated as whole time equivalent for a minimal service, which could be scaled up. From a hospital with an existing service, patients seen by specialist palliative care had associated costs of £14 728 in LYOL, compared with £18 558 for those dying without. Savings more than balanced the costs of introducing the service. Average bed days per patient in LYOL were reduced (19.4 vs 25.7) also intensive care unit bed days (1.1 vs 1.8). Despite this, time from first admission in LYOL to death was similar in both groups (6 months for the specialist palliative care group vs 5 for those not referred)., Conclusions: We have produced a template business case for an 'ideal' advanced liver disease support service, which self-funds and saves many bed days. The model can be easily adapted for local use in other trusts. We describe the methodology for calculating patient-level costs and the required service size. We present a financially compelling argument to expand a service to meet a growing need., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: People with severe mental illness (SMI) are 2.5 times more likely to die prematurely from cancer in England. Lower participation in screening may be a contributing factor., Methods: Clinical Practice Research Datalink data for 1.71 million, 1.34 million and 2.50 million adults were assessed (using multivariate logistic regression) for possible associations between SMI and participation in bowel, breast and cervical screening, respectively., Results: Screening participation was lower among adults with SMI, than without, for bowel (42.11% vs. 58.89%), breast (48.33% vs. 60.44%) and cervical screening (64.15% vs. 69.72%; all p < 0.001). Participation was lowest in those with schizophrenia (bowel, breast, cervical: 33.50%, 42.02%, 54.88%), then other psychoses (41.97%, 45.57%, 61.98%), then bipolar disorder (49.94%, 54.35%, 69.69%; all p-values < 0.001, except cervical screening in bipolar disorder; p-value > 0.05). Participation was lowest among people with SMI who live in the most deprived quintile of areas (bowel, breast, cervical: 36.17%, 40.23%, 61.47%), or are of a Black ethnicity (34.68%, 38.68%, 64.80%). Higher levels of deprivation and diversity, associated with SMI, did not explain the lower participation in screening., Conclusions: In England, participation in cancer screening is low among people with SMI. Support should be targeted to ethnically diverse and socioeconomically deprived areas, where SMI prevalence is greatest., (© 2023. The Author(s).)

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.

Competing Interests: Rocket Medical are supplying the long-term drains for the REDUCe 2 study, for which SV is chief investigator. SV reports research grants and consultancy fees from Gilead Sciences; and speaker fees from Gilead Sciences, Dr Falk, and AbbVie. All other authors declare no competing interests.

The COVID-19 pandemic has had high mortality rates in the elderly and frail worldwide, particularly in care homes. This is driven by the difficulty of isolating care homes from the wider community, the large population sizes within care facilities (relative to typical households), and the age/frailty of the residents. To quantify the mortality risk posed by disease, the case fatality risk (CFR) is an important tool. This quantifies the proportion of cases that result in death. Throughout the pandemic, CFR amongst care home residents in England has been monitored closely. To estimate CFR, we apply both novel and existing methods to data on deaths in care homes, collected by Public Health England and the Care Quality Commission. We compare these different methods, evaluating their relative strengths and weaknesses. Using these methods, we estimate temporal trends in the instantaneous CFR (at both daily and weekly resolutions) and the overall CFR across the whole of England, and dis-aggregated at regional level. We also investigate how the CFR varies based on age and on the type of care required, dis-aggregating by whether care homes include nursing staff and by age of residents. This work has contributed to the summary of measures used for monitoring the UK epidemic., Competing Interests: The authors have declared that no competing interests exist.