Search

Objectives: The aim was to synthesize evidence on the use of person-centered outcome measures to facilitate integrated palliative care for older people and build a logic model depicting the mechanisms through which person-centered outcome measures support integrated care., Design: Mixed methods systematic review using a data-based convergent synthesis design., Setting and Participants: Older people aged ≥60 years who are approaching the end of their lives in multiple settings., Methods: The study was underpinned by a conceptual framework of integrated palliative care, which informed the search strategy, data extraction, analysis, and synthesis. A hybrid search strategy was implemented, with database searches (PsycINFO, MEDLINE, CINAHL, and ASSIA) complemented by snowball searches. Qualitative and quantitative data were analyzed by narrative synthesis to summarize and explain the findings. The findings informed a logic model depicting the mechanisms of using person-centered outcome measures to support integrated palliative care., Results: Twenty-six studies were included. Three mixed methods studies, 2 qualitative studies, and 21 quantitative studies were included. There was evidence that person-centered outcome measures could support integrated palliative care through informing palliative care policy development (n = 4), facilitating joint working across settings (n = 5), enabling close collaboration of multidisciplinary teams (n = 14), promoting joint education (n = 1), facilitating timing and specialist referral (n = 6), and enhancing patient-centered care (n = 3)., Conclusions and Implications: This review makes an important, novel, and theoretically informed contribution to the delivery of scalable and sustainable integrated palliative care into the care of older people using person-centered outcome measures. The constructed logic model provides a conceptual framework and practical approach to how person-centered outcome measures support multilevel integration. A future area of research is the development of person-centered outcome measure interventions informed by the logic model to meet clinical needs., Competing Interests: Disclosure L.C. is funded by a PGR International Studentship 2021/22 grant from King’s College London (21140830). K.E.S. is the Laing Galazka Chair in Palliative Care at King’s College London, funded by an endowment from Cicely Saunders International and the Kirby Laing Foundation. Y.M. is funded by King’s College London and China Scholarship Council (K-CSC-202106370016). W.S. is funded by Scholarship in Commemoration of His Majesty King Bhumibol Adulyadej's 90th Birthday Anniversary for PhD program from Princess Agrarajakumari College of Nursing, Chulabhorn Royal Academy, Thailand. The remaining authors declare no conflicts of interest., (Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.)

Objectives: To explore formal and informal care costs in the last 3 months of life for people with dementia, and to evaluate the association between transitions to hospital and usual place of care with costs., Design: Cross-sectional study using pooled data from 3 mortality follow-back surveys., Setting and Participants: People who died with dementia., Methods: The Client Service Receipt Inventory survey was used to derive formal (health, social) and informal care costs in the last 3 months of life. Generalized linear models were used to explore the association between transitions to hospital and usual place of care with formal and informal care costs., Results: A total of 146 people who died with dementia were included. The mean age was 88.1 years (SD 6.0), and 98 (67.1%) were female. The usual place of care was care home for 85 (58.2%). Sixty-five individuals (44.5%) died in a care home, and 85 (58.2%) experienced a transition to hospital in the last 3 months. The mean total costs of care in the last 3 months of life were £31,224.7 (SD 23,536.6). People with a transition to hospital had higher total costs (£33,239.2, 95% CI 28,301.8-39,037.8) than people without transition (£21,522.0, 95% CI 17,784.0-26,045.8), mainly explained by hospital costs. People whose usual place of care was care homes had lower total costs (£23,801.3, 95% CI 20,172.0-28,083.6) compared to home (£34,331.4, 95% CI 27,824.7-42,359.5), mainly explained by lower informal care costs., Conclusions and Implications: Total care costs are high among people dying with dementia, and informal care costs represent an important component of end-of-life care costs. Transitions to hospital have a large impact on total costs; preventing these transitions might reduce costs from the health care perspective, but not from patients' and families' perspectives. Access to care homes could help reduce transitions to hospital as well as reduce formal and informal care costs., (Copyright © 2022 The Authors. Published by Elsevier Inc. All rights reserved.)

Context: Evidence of symptom control outcomes in severe COVID is scant., Objectives: To determine changes in symptoms among people severely ill or dying with COVID supported by palliative care, and associations with treatments and survival., Methods: Multicentre cohort study of people with COVID across England and Wales supported by palliative care services, during the pandemic in 2020 and 2021. We analysed clinical, demographic and survival data, symptom severity at baseline (referral to palliative care, first COVID assessment) and at three follow-up assessments using the Integrated Palliative care Outcome Scale - COVID version., Results: We included 572 patients from 25 services, mostly hospital support teams; 496 (87%) were newly referred to palliative care with COVID, 75 (13%) were already supported by palliative care when they contracted COVID. At baseline, patients had a mean of 2.4 co-morbidities, mean age 77 years, a mean of five symptoms, and were often bedfast or semiconscious. The most prevalent symptoms were: breathlessness, weakness/lack of energy, drowsiness, anxiety, agitation, confusion/delirium, and pain. Median time in palliative care was 46 hours; 77% of patients died. During palliative care, breathlessness, agitation, anxiety, delirium, cough, fever, pain, sore/dry mouth and nausea improved; drowsiness became worse. Common treatments were low dose morphine and midazolam. Having moderate to severe breathlessness, agitation and multimorbidity were associated with shorter survival., Conclusion: Symptoms of COVID quickly improved during palliative care. Breathlessness, agitation and multimorbidity could be used as triggers for timelier referral, and symptom guidance for wider specialities should build on treatments identified in this study., (Copyright © 2022 The Authors. Published by Elsevier Inc. All rights reserved.)

Competing Interests: Declaration of interests LS is an honorary consultant at the WHO Collaborating Centre for Community Participation in Palliative Care and Long Term Care. RS is the chair of Patients Know Best, a for-profit company that gives patients and citizens access to and control of their health and social care records. The system can be used to include advanced care plans and advance directives. He is unpaid but has equity in the company. He is also the unpaid chair of the Point of Care Foundation, which works to humanise health and social care, including at the end of life, and of the UK Health Alliance on Climate Change, which brings together many royal colleges, the British Medical Association, The Lancet, and BMJ to mitigate the effects of climate change and emphasise the risks and potential benefits to health. He holds shares in the UnitedHealth Group, a health and wellbeing company operating in the USA, UK, and other countries, that offers end-of-life services. SHA received an honorarium in 2018 by Mundipharma for leading a publication on cancer pain in low-income and middle-income countries. MH is employed as Head of Information Support at Hospice UK. Hospice UK is the national charity for hospice and end-of-life care. It works to ensure all adults and children living with a terminal or life-shortening illness receive the care and support they need, when they need it. CK, like most people, has personal experience of deaths and prolongation of life that influence the way she thinks as a scholar about these issues. She has written about these publicly, in particular the unwanted prolongation of her sister Polly's life contrary to her best interests, and her mother's death, which was greatly supported by an advance decision to refuse treatment and a lasting power of attorney for health and welfare. CK is also on a number of committees, working parties, and charities related to death and dying, including the core group of the British Medical Association group revising the guidance on clinically assisted nutrition and hydration, and the Guideline Development Group on Prolonged Disorders of Consciousness of the Royal College of Physicians. FMK reports consulting fees unrelated to this paper from Merck KGaA/EMD Serono for work on gender equity in leadership, non-financial support from Grunenthal Foundation, and grants from Roche, Vitas Healthcare, Chinoin, Grunenthal, and Novartis, outside the submitted work. JN is the Chair of University College Hospitals NHS Foundation Trust and Whittington Health NHS Trust. MRR is the unpaid chair of Pallium India, a charitable trust in India that works towards integration of palliative care with health care, and the unpaid director of Trivandrum Institute of Palliative Sciences, a WHO Collaborating Centre for Training and Policy on Access to Pain Relief. ES reports personal fees from the Social Science Research Council during the conduct of the study; and personal fees from Saitama Prefectural University (Japan), Kyoto University (Japan), and the University of Tokyo (Japan), outside the submitted work. KES is funded by a National Institute for Health Research Clinician Scientist Fellowship (CS-2015-15-005) and is the Laing Galazka Chair in Palliative Care at King's College London, funded by an endowment from Cicely Saunders International and the Kirby Laing Foundation. The views expressed are those of the authors and not necessarily those of the NHS, the National Institute for Health Research, or the Department of Health and Social Care. All other authors declare no competing interests.

Objectives: Emergency department (ED) attendance is common among people with dementia and increases toward the end of life. The aim was to systematically review factors associated with ED attendance among people with dementia approaching the end of life., Design: Systematic search of 6 databases (MEDLINE, EMBASE, ASSIA, CINAHL, PsycINFO, and Web of Science) and gray literature. Quantitative studies of any design were eligible. Newcastle-Ottawa Scales and Cochrane risk-of-bias tools assessed study quality. Extracted data were reported narratively, using a theoretical model. Factors were synthesized based on strength of evidence using vote counting (PROSPERO registration: CRD42020193271)., Setting and Participants: Adults with dementia of any subtype and severity, in the last year of life, or in receipt of services indicative of nearness to end of life., Measurements: The primary outcome was ED attendance, defined as attending a medical facility that provides 24-hour access to emergency care, with full resuscitation resources., Results: After de-duplication, 18,204 titles and abstracts were screened, 367 were selected for full-text review and 23 studies were included. There was high-strength evidence that ethnic minority groups, increasing number of comorbidities, neuropsychiatric symptoms, previous hospital transfers, and rural living were positively associated with ED attendance, whereas higher socioeconomic position, being unmarried, and living in a care home were negatively associated with ED attendance. There was moderate-strength evidence that being a woman and receiving palliative care were negatively associated with ED attendance. There was only low-strength evidence for factors associated with repeat ED attendance., Conclusions and Implications: The review highlights characteristics that could help identify patients at risk of ED attendance near the end of life and potential service-related factors to reduce risks. Better understanding of the mechanisms by which residential facilities and palliative care are associated with reduced ED attendance is needed., (Copyright © 2021 The Authors. Published by Elsevier Inc. All rights reserved.)

Context: Systematic data on the care of people dying with COVID-19 are scarce., Objectives: To understand the response of and challenges faced by palliative care services during the COVID-19 pandemic, and identify associated factors., Methods: We surveyed palliative care and hospice services, contacted via relevant organizations. Multivariable logistic regression identified associations with challenges. Content analysis explored free text responses., Results: A total of 458 services responded; 277 UK, 85 rest of Europe, 95 rest of the world; 81% cared for patients with suspected or confirmed COVID-19, 77% had staff with suspected or confirmed COVID-19; 48% reported shortages of Personal Protective Equipment (PPE), 40% staff shortages, 24% medicines shortages, 14% shortages of other equipment. Services provided direct care and education in symptom management and communication; 91% changed how they worked. Care often shifted to increased community and hospital care, with fewer admissions to inpatient palliative care units. Factors associated with increased odds of PPE shortages were: charity rather than public management (OR 3.07, 95% CI 1.81-5.20), inpatient palliative care unit rather than other settings (OR 2.34, 95% CI 1.46-3.75). Being outside the UK was associated with lower odds of staff shortages (OR 0.44, 95% CI 0.26-0.76). Staff described increased workload, concerns for their colleagues who were ill, whilst expending time struggling to get essential equipment and medicines, perceiving they were not a front-line service., Conclusion: Palliative care services were often overwhelmed, yet felt ignored in the COVID-19 response. Palliative care needs better integration with health care systems when planning and responding to future epidemics/pandemics., Competing Interests: Conflict of Interest IJH is a National Institute for Health Research (NIHR) Emeritus Senior Investigator and is supported by the NIHR Applied Research Collaboration (ARC) South London (SL) at King's College Hospital National Health Service Foundation Trust. IJH leads the Palliative and End of Life Care theme of the NIHR ARC SL and co-leads the national theme in this. MM is funded by a NIHR Career Development Fellowship (CDF-2017-10-009) and NIHR ARC SL. LF is funded by a NIHR Career Development Fellowship (CDF-2018-11-ST2-002). KS is funded by a NIHR Clinician Scientist Fellowship (CS-2015-15-005). RC is funded by Cicely Saunders International. FEM is a NIHR Senior Investigator. MBH is supported by the NIHR ARC SL. The views expressed in this article are those of the authors and not necessarily those of the NIHR, or the Department of Health and Social Care., (Copyright © 2021 The Authors. Published by Elsevier Inc. All rights reserved.)

Context: Palliative care is an essential component of the coronavirus disease 2019 (COVID-19) pandemic response but is overlooked in national and international preparedness plans. The preparedness and capacity of African palliative care services to respond to COVID-19 is unknown., Objectives: To evaluate the preparedness and capacity of African palliative care services to respond to the COVID-19 pandemic., Methods: We developed, piloted, and conducted a cross-sectional online survey guided by the 2005 International Health Regulations. It was electronically mailed to the 166 African Palliative Care Association's members and partners. Descriptive analyses were conducted., Results: About 83 participants from 21 countries completed the survey. Most services had at least one procedure for the case management of COVID-19 or another infectious disease (63%). Respondents reported concerns over accessing running water, soap, and disinfectant products (43%, 42%, and 59%, respectively) and security concerns for themselves or their staff (52%). Two in five services (41%) did not have any or make available additional personal protective equipment. Most services (80%) reported having the capacity to use technology instead of face-to-face appointment, and half (52%) reported having palliative care protocols for symptom management and psychological support that could be shared with nonspecialist staff in other health care settings., Conclusion: Our survey suggests that African palliative care services could support the wider health system's response to the COVID-19 pandemic with greater resources such as basic infection control materials. It identified specific and systemic weaknesses impeding their preparedness to respond to outbreaks. The findings call for urgent measures to ensure staff and patient safety., (Copyright © 2020 The Authors. Published by Elsevier Inc. All rights reserved.)

Cases of coronavirus disease 2019 (COVID-19) are escalating rapidly across the globe, with the mortality risk being especially high among those with existing illness and multimorbidity. This study aimed to synthesize evidence for the role and response of palliative care and hospice teams to viral epidemics/pandemics and inform the COVID-19 pandemic response. We conducted a rapid systematic review according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines in five databases. Of 3094 articles identified, 10 were included in this narrative synthesis. Included studies were from West Africa, Taiwan, Hong Kong, Singapore, the U.S., and Italy. All had an observational design. Findings were synthesized using a previously proposed framework according to systems (policies, training and protocols, communication and coordination, and data), staff (deployment, skill mix, and resilience), space (community provision and use of technology), and stuff (medicines and equipment as well as personal protective equipment). We conclude that hospice and palliative services have an essential role in the response to COVID-19 by responding rapidly and flexibly; ensuring protocols for symptom management are available, and training nonspecialists in their use; being involved in triage; considering shifting resources into the community; considering redeploying volunteers to provide psychosocial and bereavement care; facilitating camaraderie among staff and adopting measures to deal with stress; using technology to communicate with patients and carers; and adopting standardized data collection systems to inform operational changes and improve care., (Copyright © 2020. Published by Elsevier Inc.)

Hospital palliative care is an essential part of the COVID-19 response but data are lacking. We identified symptom burden, management, response to treatment, and outcomes for a case series of 101 inpatients with confirmed COVID-19 referred to hospital palliative care. Patients (64 men, median [interquartile range {IQR}] age 82 [72-89] years, Elixhauser Comorbidity Index 6 [2-10], Australian-modified Karnofsky Performance Status 20 [10-20]) were most frequently referred for end-of-life care or symptom control. Median [IQR] days from hospital admission to referral was 4 [1-12] days. Most prevalent symptoms (n) were breathlessness (67), agitation (43), drowsiness (36), pain (23), and delirium (24). Fifty-eight patients were prescribed a subcutaneous infusion. Frequently used medicines (median [range] dose/24 hours) were opioids (morphine, 10 [5-30] mg; fentanyl, 100 [100-200] mcg; alfentanil, 500 [150-1000] mcg) and midazolam (10 [5-20] mg). Infusions were assessed as at least partially effective for 40/58 patients, while 13 patients died before review. Patients spent a median [IQR] of 2 [1-4] days under the palliative care team, who made 3 [2-5] contacts across patient, family, and clinicians. At March 30, 2020, 75 patients had died; 13 been discharged back to team, home, or hospice; and 13 continued to receive inpatient palliative care. Palliative care is an essential component to the COVID-19 response, and teams must rapidly adapt with new ways of working. Breathlessness and agitation are common but respond well to opioids and benzodiazepines. Availability of subcutaneous infusion pumps is essential. An international minimum data set for palliative care would accelerate finding answers to new questions as the COVID-19 pandemic develops., (Copyright © 2020 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Context: Most patient-reported outcome measurement tools in multiple sclerosis (MS) are geared toward less severely affected patients. Palliative care outcome measures have not been validated in patients with MS., Objectives: To assess the psychometric properties of the Core-Palliative Care Outcome Scale (Core-POS) and POS-MS-Symptoms (POS-MS-S) in patients severely affected by MS., Methods: Secondary analyses were conducted on data from a Phase II trial of palliative care in MS. Patients completed assessments using the following five scales: Core-POS, POS-MS-S, the Multiple Sclerosis Impact Scale, the United Kingdom Neurological Disability Scale, and the Expanded Disability Status Scale. Data quality, scaling assumptions, acceptability, internal consistency, and construct validity of the Core-POS and POS-MS-S were determined using standard psychometric methods., Results: The 46 participants had a mean ±SD age of 52.8 ±10.6 years. The mean Expanded Disability Status Scale score was 7.9 ± 1.2. Missing data were low (0 and 0.2% for the Core-POS and POS-MS-S, respectively), and floor and ceiling effects were absent. Internal consistency was good (Cronbach's alpha for the Core-POS and POS-MS-S were 0.72 [95% CI 0.56-0.84] and 0.81 [95% CI 0.72-0.89], respectively). Construct validity was consistent with a priori hypotheses 17 of 20 times., Conclusion: Psychometric analyses confirm that the Core-POS and POS-MS-S are acceptable, reliable, and valid in patients severely affected by MS., (Copyright © 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.)