Integrating lived experiences of out-of-hours health services for people with palliative and end-of-life care needs with national datasets for people dying in Scotland in 2016: A mixed methods, multi-stage design.

BACKGROUND: Unscheduled care is used increasingly during the last year of life by people known to have significant palliative care needs. AIM: To document the frequency and patterns of use of unscheduled healthcare by people in their last year of life and understand the experiences and perspectives of patients, families and professionals about accessing unscheduled care out-of-hours. DESIGN: A mixed methods, multi-stage study integrating a retrospective cohort analysis of unscheduled healthcare service use in the last year of life for all people dying in Scotland in 2016 with qualitative data from three regions involving service users, bereaved carers and general practitioners. SETTING: Three contrasting Scottish Health Board regions and national datasets for the whole of Scotland. RESULTS: People who died in Scotland in 2016 (n = 56,407) had 472,360 unscheduled contacts with one of five services: telephone advice, primary care, ambulance service, emergency department and emergency hospital admission. These formed 206,841 individual continuous unscheduled care pathways: 65% starting out-of-hours. When accessing healthcare out-of-hours, patients and carers prioritised safety and a timely response. Their choice of which service to contact was informed by perceptions and previous experiences of potential delays and whether the outcome might be hospital admission. Professionals found it difficult to practice palliative care in a crisis unless the patient had previously been identified. CONCLUSION: Strengthening unscheduled care in the community, together with patient and public information about how to access these services could prevent hospital admissions of low benefit and enhance community support for people living with advanced illness.

Palliative care integration indicators: an European regional analysis.

OBJECTIVE: To estimate the capacity of European countries to integrate palliative care (PC) into their health systems through PC service provision for patients of all ages, with different care needs and diseases, in various settings and by a range of providers. METHODS: Secondary analysis of survey data from 51 countries with 22 indicators explored the integration of available PC resources for children, for patients of all ages, at the primary care level, for oncology and cardiac patients, and in long-term care facilities. We also measured volunteer participation. Results were quantified, converted into weighted subscores by area and combined into a single 'Integration Capacity Score (ICS)' for each country. RESULTS: Thirty-eight countries reported 543 specialised paediatric PC services. One-third of all surveyed countries reported 20% or more of patients with PC needs at the primary care level. Twenty-four countries have a total of 155 designated centres that integrate oncology and PC. Eight countries were pioneering cardiology services that integrate PC. Eight reported a volunteer workforce of over 1000 and 12 had policies regulating PC provision and interventions in long-term care facilities. Across all indicators, 39 countries (76%) score from low to very low integration capacity, 8 (16%) score at an intermediate level, and 4 (8%; the Netherlands, UK, Germany and Switzerland) report a high-level integration of PC into their health systems. CONCLUSION: Variable progress according to these indicators shows that most European countries are still in the process of integrating PC into their health systems.

Frailty degree and illness trajectories in older people towards the end-of-life: a prospective observational study.

OBJECTIVES: To assess the degree of frailty in older people with different advanced diseases and its relationship with end-of-life illness trajectories and survival. METHODS: Prospective, observational study, including all patients admitted to the Acute Geriatric Unit of the University Hospital of Vic (Spain) during 12 consecutive months (2014-2015), followed for up to 2 years. Participants were identified as end-of-life people (EOLp) using the NECPAL (NECesidades PALiativas, palliative care needs) tool and were classified according to their dominant illness trajectory. The Frail-VIG index (Valoración Integral Geriátrica, Comprehensive Geriatric Assessment) was used to quantify frailty degree, to calculate the relationship between frailty and mortality (Receiver Operating Characteristic (ROC) curves), and to assess the combined effect of frailty degree and illness trajectories on survival (Cox proportional hazards model). Survival curves were plotted using the Kaplan-Meier estimator with participants classified into four groups (ie, no frailty, mild frailty, moderate frailty and advanced frailty) and were compared using the log-rank test. RESULTS: Of the 590 persons with a mean (SD) age of 86.4 (5.6) years recruited, 260 (44.1%) were identified as EOLp, distributed into cancer (n=31, 11.9%), organ failure (n=79, 30.4%), dementia (n=86, 33.1%) and multimorbidity (n=64, 24.6%) trajectories. All 260 EOLp had some degree of frailty, mostly advanced frailty (n=184, 70.8%), regardless of the illness trajectory, and 220 (84.6%) died within 2 years. The area under the ROC curve (95% CI) after 2 years of follow-up for EOLp was 0.87 (0.84 to 0.92) with different patterns of survival decline in the different end-of-life trajectories (p<0.0001). Cox regression analyses showed that each additional deficit of the Frail-VIG index increased the risk of death by 61.5%, 30.1%, 29.6% and 12.9% in people with dementia, organ failure, multimorbidity and cancer, respectively (p<0.01 for all the coefficients). CONCLUSIONS: All older people towards the end-of-life in this study were frail, mostly with advanced frailty. The degree of frailty is related to survival across the different illness trajectories despite the differing survival patterns among trajectories. Frailty indexes may be useful to assess end-of-life older people, regardless of their trajectory.

How many people will need palliative care in Scotland by 2040? A mixed-method study of projected palliative care need and recommendations for service delivery.

OBJECTIVE: To estimate future palliative care need and complexity of need in Scotland, and to identify priorities for future service delivery. DESIGN: We 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. SETTING: Scotland, population of 5.4 million. PARTICIPANTS: All decedents in Scotland over 11 years (2007 to 2017). The consultation had 34 participants; 24 completed the consensus survey. PRIMARY AND SECONDARY OUTCOMES: Estimates 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 were analysed descriptively. RESULTS: We project that by 2040, the number of people requiring palliative care will increase by at least 14%; and by 20% if we factor in multimorbidity. The number of people dying from multiple diseases associated with different disease groups is projected to increase from 27% of all deaths in 2017 to 43% by 2040. To address increased need and complexity, experts prioritised sustained investment in a national digital platform, roll-out of integrated electronic health and social care records; and approaches that remain person-centred. CONCLUSIONS: By 2040 more people in Scotland are projected to die with palliative care needs, and the complexity of need will increase markedly. Service delivery models must adapt to serve growing demand and complexity associated with dying from multiple diseases from different disease groups. We need sustained investment in secure, accessible, integrated and person-centred health and social care digital systems, to improve care coordination and optimise palliative care for people across care settings.

Unscheduled and out-of-hours care for people in their last year of life: a retrospective cohort analysis of national datasets.

OBJECTIVES: To analyse patterns of use and costs of unscheduled National Health Service (NHS) services for people in the last year of life. DESIGN: Retrospective cohort analysis of national datasets with application of standard UK costings. PARTICIPANTS AND SETTING: All people who died in Scotland in 2016 aged 18 or older (N=56 407). MAIN OUTCOME MEASURES: Frequency 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. RESULTS: 53 509 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 (4)=1004, p<0.001) or primary care out-of-hours (62%) (χ2 (4)=1924,p<0.001) and have hospital admissions (88%) (χ2 (4)=2644, p<0.001). People with organ failure (79%) contacted the ambulance service most frequently (χ2 (4)=584, p<0.001). Demographic factors associated with more unscheduled care were older age, social deprivation, living in own home and dying of cancer. People dying with organ failure formed the largest group in the cohort and had the highest NHS costs as a group. The cost of providing services in the community was estimated at 3.9% of total unscheduled care costs despite handling most out-of-hours calls. CONCLUSIONS: Over 90% of people used NHS unscheduled care in their last year of life. Different underlying causes of death and demographic factors impacted on initial access and subsequent pathways of care. Managing more unscheduled care episodes in the community has the potential to reduce hospital admissions and overall costs.

Redefining Palliative Care-A New Consensus-Based Definition.

CONTEXT: The International Association for Hospice and Palliative Care developed a consensus-based definition of palliative care (PC) that focuses on the relief of serious health-related suffering, a concept put forward by the Lancet Commission Global Access to Palliative Care and Pain Relief. OBJECTIVE: The main objective of this article is to present the research behind the new definition. METHODS: The three-phased consensus process involved health care workers from countries in all income levels. In Phase 1, 38 PC experts evaluated the components of the World Health Organization definition and suggested new/revised ones. In Phase 2, 412 International Association for Hospice and Palliative Care members in 88 countries expressed their level of agreement with the suggested components. In Phase 3, using results from Phase 2, the expert panel developed the definition. RESULTS: The consensus-based definition is as follows: Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers. The definition includes a number of bullet points with additional details as well as recommendations for governments to reduce barriers to PC. CONCLUSION: Participants had significantly different perceptions and interpretations of PC. The greatest challenge faced by the core group was trying to find a middle ground between those who think that PC is the relief of all suffering and those who believe that PC describes the care of those with a very limited remaining life span.

ECCO Essential Requirements for Quality Cancer Care: Primary care.

BACKGROUND: ECCO Essential Requirements for Quality Cancer Care (ERQCC) are checklists and explanations of organisation and actions that are necessary to give high-quality care to cancer patients. They are written by European experts representing all disciplines involved in cancer care. This paper concerns the integration of primary care into care for all cancers in Europe. Primary care integration.

Use of hospital palliative care according to the place of death and disease one year before death in 2013: a French national observational study.

BACKGROUND: Only limited data are available concerning the diseases managed before death and hospital palliative care (HPC) use according to place of death in France. We therefore conducted an observational study based on administrative health data in a large population to identify the diseases treated one year before death in 2013, the place of stay with or without hospital palliative care, and the place of death. METHODS: French health insurance general scheme beneficiaries were identified in the National Health data Information System (Snds) with a selection of information. Diseases were identified by algorithms from reimbursement data recorded in the Snds database. RESULTS: 347,253 people were included in this study (61% of all people who died in France). Place of death was short stay hospital for 51%, Rehab (7%), hospital at home (3%), skilled nursing home (13%) and other (26%). Chronic diseases managed in 2013 before death were cardiovascular/neurovascular diseases (56%), cancers (42%), and neurological and degenerative diseases (25%). During the year before death, 84% of people were hospitalized at least once, and 29% had received HPC. HPC was used by 52% of cancer patients (lung cancer: 62%; prostate cancer: 41%). In the absence of cancer, the use of HPC varied according to the disease: acute stroke: 24%, heart failure: 17%, dementia: 17%, multiple sclerosis: 23%. CONCLUSIONS: Health administrative data can refine the knowledge of the care pathway prior to death and the HPC utilisation and can be useful to evaluate heath policies and improve monitoring and assessment of HPC use.

Evaluation of the effects of performance dentistry on equine rideability: a randomized, blinded, controlled trial.

OBJECTIVE: This study attempted to determine: (1) if degree of dental malocclusion assigned prior to dental treatment was associated with equine rideability, assessed using a standardized score and (2) if performance dentistry improved this score. ANIMALS: Thirty-eight Franches-Montagnes stallions. METHODS: All horses were examined and assigned a dental malocclusion score by a veterinary dentist and randomized into two groups: sham treatment (Group S) and performance dentistry including occlusal equilibration (Group D). The horses were ridden twice before and three times after treatment by a professional dressage rider (unaware of treatment allocation). The horses were assigned a rideability score using a 27-point scale. The malocclusion score was compared to the average of the first two rideability scores using Spearman's coefficient of rank. Change in rideability scores over time was assessed by repeated measures ANOVA. Statistical significance was set at P < 0.05. RESULTS: There was no correlation between dental score and rideability score prior to treatment (rs = 0.06, P = 0.73). In addition, there were no differences in the rideability score between treatment groups or as an interaction of treatment group and time (P = 0.93, P = 0.83, respectively). CONCLUSIONS: In conclusion, we were unable to show that performance dentistry improved equine rideability assessed by rider scoring. The addition of more objective measurement tools and a longer assessment period may help to scientifically prove what is anecdotally believed.

Comprehensive and Integrated Palliative Care for People With Advanced Chronic Conditions: An Update From Several European Initiatives and Recommendations for Policy.

The number of people in their last years of life with advanced chronic conditions, palliative care needs, and limited life prognosis due to different causes including multi-morbidity, organ failure, frailty, dementia, and cancer is rising. Such people represent more than 1% of the population. They are present in all care settings, cause around 75% of mortality, and may account for up to one-third of total national health system spend. The response to their needs is usually late and largely based around institutional palliative care focused on cancer. There is a great need to identify these patients and integrate an early palliative approach according to their individual needs in all settings, as suggested by the World Health Organization. Several tools have recently been developed in different European regions to identify patients with chronic conditions who might benefit from palliative care. Similarly, several models of integrated palliative care have been developed, some with a public health approach to promote access to all in need. We describe the characteristics of these initiatives and suggest how to develop a comprehensive and integrated palliative approach in primary and hospital care and to design public health and community-oriented practices to assess and respond to the needs in the whole population. Additionally, we report ethical challenges and prognostic issues raised and emphasize the need for research to test the various tools and models to generate evidence about the benefits of these approaches to patients, their families, and to the health system.