The UK has many excellent care homes that provide high-quality care for their residents; however,... more The UK has many excellent care homes that provide high-quality care for their residents; however, across the care home sector, there is a significant need for improvement. Even though the majority of care homes receive a rating of 'good' from regulators, still significant numbers are identified as requiring 'improvement' or are 'inadequate'. Such findings resonate with the public perceptions of long-term care as a negative choice, to be avoided wherever possible-as well as impacting on the career choices of health and social care students. Projections of current demographics highlight that, within 10 years, the part of our population that will be growing the fastest will be those people older than 80 years old with the suggestion that spending on long-term care provision needs to rise from 0.6% of our Gross Domestic Product in 2002 to 0.96% by 2031. Teaching/research-based care homes have been developed in the USA, Canada, Norway, the Netherlands and Australi...
The "danse macabre" has been depicted in Europe since medieval times. Providing good en... more The "danse macabre" has been depicted in Europe since medieval times. Providing good end-of-life care for all patients, whatever form their last dance takes, is a global challenge. To explore typical narratives of living with and dying from advanced illnesses, to provide insights into providing effective care. Secondary analysis of data from 8 qualitative longitudinal studies: 3 cancer; 3 organ failure; 1 frailty; 1 with South Asian participants from all 3 trajectories. Patients were interviewed up to 4 times over 18 months. Researchers from each study reviewed the data using a narrative analytic framework. The narratives were initially synthesised by illness trajectory, then compared and discussed at analysis workshops. The dataset was 828 in-depth interviews with 156 patients. Cancer narratives had a well-rehearsed beginning, middle and anticipated end, with dual themes of hope for recovery alongside fear of dying. People with organ failure struggled to tell their story,...
Role of the group Advocacy for pall care in the community-Within specialist palliative care-Withi... more Role of the group Advocacy for pall care in the community-Within specialist palliative care-Within primary care and secondary care • Support and networking • Encouragement of palliative care research and development in the community • Web resource
ObjectivesFaith-based organisations (FBOs) in India provide health services particularly to margi... more ObjectivesFaith-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.MethodsAll FBOs providing palliative care in India were invited to complete an online questionnaire. Descriptive analysis was undertaken.ResultsResponse 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...
ObjectiveTo estimate future palliative care need and complexity of need in Scotland, and to ident... more ObjectiveTo estimate future palliative care need and complexity of need in Scotland, and to identify priorities for future service delivery.DesignWe estimated the prevalence of palliative care need by analysing the proportion of deaths from defined chronic progressive illnesses. We described linear projections up to 2040 using national death registry data and official mortality forecasts. An expert consultation and subsequent online consensus survey generated recommendations on meeting future palliative care need.SettingScotland, population of 5.4 million.ParticipantsAll decedents in Scotland over 11 years (2007 to 2017). The consultation had 34 participants; 24 completed the consensus survey.Primary and secondary outcomesEstimates of past and future palliative care need in Scotland from 2007 up to 2040. Multimorbidity was operationalised as two or more registered causes of death from different disease groups (cancer, organ failure, dementia, other). Consultation and survey data wer...
ObjectivesTo analyse patterns of use and costs of unscheduled National Health Service (NHS) servi... more ObjectivesTo analyse patterns of use and costs of unscheduled National Health Service (NHS) services for people in the last year of life.DesignRetrospective cohort analysis of national datasets with application of standard UK costings.Participants and settingAll people who died in Scotland in 2016 aged 18 or older (N=56 407).Main outcome measuresFrequency of use of the five unscheduled NHS services in the last 12 months of life by underlying cause of death, patient demographics, Continuous Unscheduled Pathways (CUPs) followed by patients during each care episode, total NHS and per-patient costs.Results53 509 patients (94.9%) had at least one contact with an unscheduled care service during their last year of life (472 360 contacts), with 34.2% in the last month of life. By linking patient contacts during each episode of care, we identified 206 841 CUPs, with 133 980 (64.8%) starting out-of-hours. People with cancer were more likely to contact the NHS telephone advice line (63%) (χ2 (...
Background: Three archetypal trajectories of physical decline have been identified: a short perio... more Background: Three archetypal trajectories of physical decline have been identified: a short period of rapid decline; long-term limitations with intermittent acute periods; and a prolonged gradual decline. An understanding of illness trajectories can help clarify the evolving needs of people with progressive conditions, and inform the development of palliative care services to meet their needs. Many frail older people live and die in care homes; the present study is the first to explore the illness trajectories of residents in care home settings. Aims: To determine the prevailing trajectories of physical decline in care home residents; and to identify the dominant illness trajectories of residents in care homes in Lothian, Scotland. Method: Data were collected as part of a service development project to improve palliative care in eight care homes in south Edinburgh that provided 24-hour onsite nursing care. Results: Data on 120 residents were collected. The dominant illness trajector...
The UK has many excellent care homes that provide high-quality care for their residents; however,... more The UK has many excellent care homes that provide high-quality care for their residents; however, across the care home sector, there is a significant need for improvement. Even though the majority of care homes receive a rating of 'good' from regulators, still significant numbers are identified as requiring 'improvement' or are 'inadequate'. Such findings resonate with the public perceptions of long-term care as a negative choice, to be avoided wherever possible-as well as impacting on the career choices of health and social care students. Projections of current demographics highlight that, within 10 years, the part of our population that will be growing the fastest will be those people older than 80 years old with the suggestion that spending on long-term care provision needs to rise from 0.6% of our Gross Domestic Product in 2002 to 0.96% by 2031. Teaching/research-based care homes have been developed in the USA, Canada, Norway, the Netherlands and Australi...
The "danse macabre" has been depicted in Europe since medieval times. Providing good en... more The "danse macabre" has been depicted in Europe since medieval times. Providing good end-of-life care for all patients, whatever form their last dance takes, is a global challenge. To explore typical narratives of living with and dying from advanced illnesses, to provide insights into providing effective care. Secondary analysis of data from 8 qualitative longitudinal studies: 3 cancer; 3 organ failure; 1 frailty; 1 with South Asian participants from all 3 trajectories. Patients were interviewed up to 4 times over 18 months. Researchers from each study reviewed the data using a narrative analytic framework. The narratives were initially synthesised by illness trajectory, then compared and discussed at analysis workshops. The dataset was 828 in-depth interviews with 156 patients. Cancer narratives had a well-rehearsed beginning, middle and anticipated end, with dual themes of hope for recovery alongside fear of dying. People with organ failure struggled to tell their story,...
Role of the group Advocacy for pall care in the community-Within specialist palliative care-Withi... more Role of the group Advocacy for pall care in the community-Within specialist palliative care-Within primary care and secondary care • Support and networking • Encouragement of palliative care research and development in the community • Web resource
ObjectivesFaith-based organisations (FBOs) in India provide health services particularly to margi... more ObjectivesFaith-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.MethodsAll FBOs providing palliative care in India were invited to complete an online questionnaire. Descriptive analysis was undertaken.ResultsResponse 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...
ObjectiveTo estimate future palliative care need and complexity of need in Scotland, and to ident... more ObjectiveTo estimate future palliative care need and complexity of need in Scotland, and to identify priorities for future service delivery.DesignWe estimated the prevalence of palliative care need by analysing the proportion of deaths from defined chronic progressive illnesses. We described linear projections up to 2040 using national death registry data and official mortality forecasts. An expert consultation and subsequent online consensus survey generated recommendations on meeting future palliative care need.SettingScotland, population of 5.4 million.ParticipantsAll decedents in Scotland over 11 years (2007 to 2017). The consultation had 34 participants; 24 completed the consensus survey.Primary and secondary outcomesEstimates of past and future palliative care need in Scotland from 2007 up to 2040. Multimorbidity was operationalised as two or more registered causes of death from different disease groups (cancer, organ failure, dementia, other). Consultation and survey data wer...
ObjectivesTo analyse patterns of use and costs of unscheduled National Health Service (NHS) servi... more ObjectivesTo analyse patterns of use and costs of unscheduled National Health Service (NHS) services for people in the last year of life.DesignRetrospective cohort analysis of national datasets with application of standard UK costings.Participants and settingAll people who died in Scotland in 2016 aged 18 or older (N=56 407).Main outcome measuresFrequency of use of the five unscheduled NHS services in the last 12 months of life by underlying cause of death, patient demographics, Continuous Unscheduled Pathways (CUPs) followed by patients during each care episode, total NHS and per-patient costs.Results53 509 patients (94.9%) had at least one contact with an unscheduled care service during their last year of life (472 360 contacts), with 34.2% in the last month of life. By linking patient contacts during each episode of care, we identified 206 841 CUPs, with 133 980 (64.8%) starting out-of-hours. People with cancer were more likely to contact the NHS telephone advice line (63%) (χ2 (...
Background: Three archetypal trajectories of physical decline have been identified: a short perio... more Background: Three archetypal trajectories of physical decline have been identified: a short period of rapid decline; long-term limitations with intermittent acute periods; and a prolonged gradual decline. An understanding of illness trajectories can help clarify the evolving needs of people with progressive conditions, and inform the development of palliative care services to meet their needs. Many frail older people live and die in care homes; the present study is the first to explore the illness trajectories of residents in care home settings. Aims: To determine the prevailing trajectories of physical decline in care home residents; and to identify the dominant illness trajectories of residents in care homes in Lothian, Scotland. Method: Data were collected as part of a service development project to improve palliative care in eight care homes in south Edinburgh that provided 24-hour onsite nursing care. Results: Data on 120 residents were collected. The dominant illness trajector...
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