BACKGROUND: Global annual deaths are rising. It is essential to examine where future deaths may occur to facilitate decisions regarding future service provision and resource allocation.
AIMS: To project where people will die from 2017 to 2040 in an ageing country with advanced integrated palliative care, and to prioritise recommendations based on these trends.
METHODS: Population-based trend analysis of place of death for people that died in Scotland (2004-2016) and projections using simple linear modelling (2017-2040); Transparent Expert Consultation to prioritise recommendations in response to projections.
RESULTS: Deaths are projected to increase by 15.9% from 56,728 in 2016 (32.8% aged 85+ years) to 65,757 deaths in 2040 (45% aged 85+ years). Between 2004 and 2016, proportions of home and care home deaths increased (19.8-23.4% and 14.5-18.8%), while the proportion of hospital deaths declined (58.0-50.1%). If current trends continue, the numbers of deaths at home and in care homes will increase, and two-thirds will die outside hospital by 2040. To sustain current trends, priorities include: 1) to increase and upskill a community health and social care workforce through education, training and valuing of care work; 2) to build community care capacity through informal carer support and community engagement; 3) to stimulate a realistic public debate on death, dying and sustainable funding.
CONCLUSION: To sustain current trends, health and social care provision in the community needs to grow to support nearly 60% more people at the end-of-life by 2040; otherwise hospital deaths will increase.
BACKGROUND: Burn units are intensive care facilities specialized in the treatment of patients with severe burns. As burn injuries have a major impact in physical, psychosocial, and spiritual health, palliative care can be a strengthening component of integrated care.
AIM: To review and appraise the existing evidence about the integration of palliative care in burn intensive care units with respect to (1) the concept, model and design and (2) the benefits and outcomes of this integration.
DESIGN: A systematic review was conducted following PRISMA guidelines. Protocol registered with PROSPERO (CRD42018111676).
DATA SOURCES: Five electronic databases were searched (PubMed/NLM, Web of Science, MEDLINE/TR, Ovid, and CINAHL/EBSCO) until May 2019. A narrative synthesis of the findings was constructed. Hawker et al.'s tool was used for quality appraisal.
RESULTS: A total of 299 articles were identified, of which five were included for analysis involving a total of 7353 individuals. Findings suggest that there may be benefits from integrating palliative care in burn units, specifically in terms of patients' comfort, decision-making processes, and family care. Multidisciplinary teams may experience lower levels of burden as result of integrating palliative care in burn units.
CONCLUSION: This review reflects the challenging setting of burn intensive care units. Evidence from these articles suggests that the integration of palliative care in burn intensive care units improves patients' comfort, decision-making process, and family care. Further research is needed to better understand how the integration of palliative care in burn intensive care units may be fostered and to identify the outcomes of this integration.
Background: Emergency department (ED) attendance for older people towards the end of life is common and increasing, despite most preferring home-based care. We aimed to review the factors associated with older people's ED attendance towards the end of life.
Methods: Systematic review using Medline, Embase, PsychINFO, CINAHL and Web of Science from inception to March 2017. Included studies quantitatively examined factors associated with ED attendance for people aged =65 years within the last year of life. We assessed study quality using the QualSyst tool and determined evidence strength based on quality, quantity and consistency. We narratively synthesized the quantitative findings.
Results: Of 3824 publications identified, 21 were included, combining data from 1 565 187 participants. 17/21 studies were from the USA and 19/21 used routinely collected data. We identified 47 factors and 21 were included in the final model. We found high strength evidence for associations between ED attendance and palliative/hospice care (adjusted effect estimate range: 0.1-0.94); non-white ethnicity (1.03-2.16); male gender (1.04-1.83, except 0.70 in one sub-sample) and rural areas (0.98-1.79). The final model included socio-demographic, illness and service factors, with largest effect sizes for service factors.
Conclusions: In this synthesis, receiving palliative care was associated with lower ED attendance in the last year of life for older adults. This has implications for service models for older people nearing the end of life. However, there is limited evidence from European countries and none from low or middle-income countries, which warrants further research.
BACKGROUND: Children and adolescents dying from complex chronic conditions require paediatric palliative care. One aim of palliative care is to enable a home death if desired and well supported. However, there is little data to inform care, particularly from countries without paediatric palliative care, which constitute the majority worldwide.
METHODS: This is an epidemiological study analysing death certificate data of decedents aged between 0 and 17 years in Portugal, a developed Western European country without recognised provision of paediatric palliative care, from 1987 to 2011. We analysed death certificate data on cause and place of death; the main outcome measure was home death. Complex chronic conditions included cancer, cardiovascular, neuromuscular, congenital/genetic, respiratory, metabolic, gastro-intestinal, renal, and haematology/immunodeficiency conditions. Multivariate analysis determined factors associated with home death in these conditions.
RESULTS: Annual deaths decreased from 3268 to 572. Of 38,870 deaths, 10,571 were caused by complex chronic conditions, their overall proportion increasing from 23.7% to 33.4% (22.4% to 45.4% above age 1-year). For these children, median age of death increased from 0.5 to 4.32-years; 19.4% of deaths occurred at home, declining from 35.6% to 11.5%; factors associated with home death were year of death (adjusted odds ratio 0.89, 95% confidence interval 0.89-0.90), age of death (6-10 year-olds 21.46, 16.42-28.04, reference neonates), semester of death (October-March 1.18, 1.05-1.32, reference April-September), and cause of death (neuromuscular diseases 1.59, 1.37-1.84, reference cancer), with wide regional variation.
CONCLUSIONS: This first trend analysis of paediatric deaths in Portugal (an European country without paediatric palliative care) shows that palliative care needs are increasing. Children are surviving longer and, in contrast with countries where paediatric palliative care is thriving, there is a long-term trend of dying in hospital instead of at home. Age, diagnosis, season and region are associated with home death, and should be considered when planning services to support families choosing this option. Priorities should address needs of the youngest children, those with cancer, neuromuscular and cardiovascular conditions, as well as inequities related to place of residence.
BACKGROUND: Most people would prefer to die at home as opposed to hospital; therefore, understanding mortality patterns by place of death is essential for health resources allocation.
AIM: We examined trends and risk factors for hospital death in conditions needing palliative care in a country without integrated palliative care.
DESIGN: This is a death certificate study. We examined factors associated with hospital death using logistic regression.
SETTING/PARTICIPANTS: All adults (1,045,381) who died between 2003 and 2012 in Portugal were included. We identified conditions needing palliative care from main causes of death: cancer, heart/cerebrovascular, renal, liver, respiratory and neurodegenerative diseases, dementia/Alzheimer's/senility and HIV/AIDS.
RESULTS: Conditions needing palliative care were responsible for 70.7% deaths ( N = 738,566, median age 80); heart and cerebrovascular diseases (43.9%) and cancer (32.2%) accounted for most. There was a trend towards hospital death (standardised percentage: 56.3% in 2003, 66.7% in 2012; adjusted odds ratio: 1.04, 95% confidence interval: 1.04-1.04). Hospital death risk was higher for those aged 18-39 years (3.46, 3.25-3.69 vs aged 90+), decreasing linearly with age; lower in dementia/Alzheimer's/senility versus cancer (0.13, 0.13-0.13); and higher for the married and in HIV/AIDS (3.31, 3.00-3.66). Effects of gender, working status, weekday and month of death, hospital beds availability, urbanisation level and deprivation were small.
CONCLUSION: The upward hospital death trend and fact that being married are risk factors for hospital death suggest that a reliance on hospitals may coexist with a tradition of extended family support. The sustainability of this model needs to be assessed within the global transition pattern in where people die.
OBJECTIVES: Most terminally ill cancer patients prefer to die at home, yet only a minority are able to achieve this. Our aim was to investigate the factors associated with cancer patients achieving their preference to die at home.
METHODS: This study took the form of a mortality followback, population-based, observational survey of the relatives of deceased cancer patients in Northern Ireland. Individuals who registered the death of a friend or relative (aged = 18 years) between 1 December 2011 and 31 May 2012, where the primary cause of death was cancer (ICD10: C00-D48), who were invited to take part. Preferred and actual place of death, and patient, service, and clinical data were collected using the QUALYCARE postal questionnaire. Multivariable logistic regression was employed to investigate the factors associated with achieving a home death when preferred.
RESULTS: Some 467 of 1,493 invited informants completed the survey. The 362 (77.5%) who expressed a preference for dying at home and spent time at home in their final 3 months were included in our analysis. Of these, 53.4% achieved their preference of a home death. Factors positively associated with achieving a home death were: living in an affluent area, receipt of good and satisfactory district nurse care, discussing place of death with health professionals, and the caregiver's preference for a home death. Being older than 80 years of age, being a Presbyterian, and being unconscious most of the time during their final week were negatively associated with achieving a home death.
SIGNIFICANCE OF RESULTS: Communication, care satisfaction, and caregiver preferences were all associated with home death. Our findings will help inform the design of future interventions aimed at increasing the proportion of patients achieving their preferred place of death at home, for example, by targeting interventions toward older patients and those from the most deprived communities.
BACKGROUND: Population ageing represents a global challenge for future end-of-life care. Given new trends in place of death, it is vital to examine where the rising number of deaths will occur in future years and implications for health and social care.
AIM: To project where people will die from 2015 to 2040 across all care settings in England and Wales.
DESIGN: Population-based trend analysis and projections using simple linear modelling. Age- and gender-specific proportions of deaths in hospital, care home, home, hospice and 'other' were applied to numbers of expected future deaths.
Setting/population: All deaths (2004-2014) from death registration data and predicted deaths (2015-2040) from official population forecasts in England and Wales.
RESULTS: Annual deaths are projected to increase from 501,424 in 2014 (38.8% aged 85 years and over) to 635,814 in 2040 (53.6% aged 85 years and over). Between 2004 and 2014, proportions of home and care home deaths increased (18.3%–22.9% and 16.7%– 21.2%) while hospital deaths declined (57.9%–48.1%). If current trends continue, numbers of deaths in care homes and homes will increase by 108.1% and 88.6%, with care home the most common place of death by 2040. If care home capacity does not expand and additional deaths occur in hospital, hospital deaths will start rising by 2023.
CONCLUSION: To sustain current trends, end-of-life care provision in care homes and the community needs to double by 2040. An infrastructure across care settings that supports rising annual deaths is urgently needed; otherwise, hospital deaths will increase.
CONTEXT: Discrete choice experiment (DCE) is a quantitative method that helps determine which service attributes are most valued by people and consequently improve their well-being.
OBJECTIVES: To test a new DCE on home palliative care (HPC).
METHODS: Cross-sectional survey using the DCE method with adult patients and their family caregivers, users of three HPC services in Portugal. Service attributes were based on a Cochrane review, a meta-ethnography, and the few existing DCEs on HPC: 1) team's availability, 2) support for family caregivers, 3) homecare support, 4) information and planning, and 5) waiting time. The experimental design consisted in three blocks of eight choice sets where participants chose between two service alternatives that combined different levels of each attribute. We piloted the DCE using cognitive interviewing. Interviews were analysed for difficulties using Tourangeau's model of information processing.
RESULTS: The DCE was conducted with 21 participants out of 37 eligible (10 patients with median Palliative Performance Scale =45, 11 caregivers). Most participants found the DCE easy (median 2 from 1-5), though 2 patients did not finish the exercise. Key difficulties related to comprehension (e.g. waiting time sometimes understood as response time for visit instead of time from referral to care start) and judgement (e.g. indecision due to similar service alternatives).
CONCLUSION: The DCE method is feasible and acceptable, but not all patients are able to participate. In the main study phase we will give more attention to the explanation of the waiting time attribute.
Objectives: To identify factors associated with end-of-life (EoL) transition from usual place of care to the hospital as place of death for people aged 75 and older.
Design: Population-based mortality follow-back survey.
Setting: Deaths over 6 months in 2012 in two unitary authorities in England covering 800 square miles with more than 1 million residents.
Participants: A random sample of people aged 75 and older who died in a care home or hospital and all those who died at home or in a hospice unit (N = 882). Cases were identified from death registrations. The person who registered the death (a relative for 98.9%) completed the survey.
Measurements: The main outcome was EoL transition to the hospital as place of death versus no EoL transition to the hospital. Multivariable modified Poisson regression was used to examine factors (illness, demographic, environmental) related to EoL transition to the hospital.
Results: Four hundred forty-three (50.2%) individuals responded, describing the care of the people who died. Most died from nonmalignant conditions (76.3%) at a mean age of 87.4 ± 6.4. One hundred forty-six (32.3%) transitioned to the hospital and died there. Transition was more likely for individuals with respiratory disease than for those with cancer (prevalence ratio (PR) = 2.07, 95% confidence interval (CI) = 1.42-3.01) and for people with severe breathlessness (PR = 1.96, 95% CI = 1.12-3.43). Transition was less likely if EoL preferences had been discussed with a healthcare professional (PR = 0.60, 95% CI = 0.42-0.88) and when there was a key healthcare professional (PR = 0.74, 95% CI = 0.58-0.95).
Conclusion: To reduce EoL transition to the hospital for older people, there needs to be improved management of breathlessness in the community and better access to a key healthcare professional skilled in coordinating care, communication, facilitating complex discussions, and in planning for future care.
La recherche en soins palliatifs bénéficie d'une approche collaborative, mais ce n'est pas toujours facile d'y arriver. Les auteurs expliquent comment la création du forum "Clinical Academic Palliative Care" dans le nord du Portugal a permis aux médecins et aux chercheurs de travailler ensemble.