Risk factors for hospital death in conditions needing palliative care: Nationwide population-based death certificate study.

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.

Valuing Attributes of Home Palliative Care With Service Users: A Pilot Discrete Choice Experiment.

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: The objective of this study was 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 analyzed for difficulties using Tourangeau's model of information processing. RESULTS: The DCE was conducted with 21 participants of 37 eligible (10 patients with median Palliative Performance Scale score = 45, 11 caregivers). Most participants found the DCE easy (median 2 from 1 to 5), although two 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 judgment (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.

Home palliative care works: but how? A meta-ethnography of the experiences of patients and family caregivers.

OBJECTIVE: To understand patients and family caregivers' experiences with home palliative care services, in order to identify, explore and integrate the key components of care that shape the experiences of service users. METHODS: We performed a meta-ethnography of qualitative evidence following PRISMA recommendations for reporting systematic reviews. The studies were retrieved in 5 electronic databases (MEDLINE, EMBASE, PsycInfo, BNI, CINAHL) using 3 terms and its equivalents ('Palliative', 'Home care', 'Qualitative research') combined with 'AND', complemented with other search strategies. We included original qualitative studies exploring experiences of adult patients and/or their family caregivers (≥18 years) facing life-limiting diseases with palliative care needs, being cared for at home by specialist or intermediate home palliative care services. RESULTS: 28 papers reporting 19 studies were included, with 814 participants. Of these, 765 were family caregivers and 90% were affected by advanced cancer. According to participants' accounts, there are 2 overarching components of home palliative care: presence (24/7 availability and home visits) and competence (effective symptom control and skilful communication), contributing to meet the core need for security. Feeling secure is central to the benefits experienced with each component, allowing patients and family caregivers to focus on the dual process of living life and preparing death at home. CONCLUSIONS: Home palliative care teams improve patients and caregivers experience of security when facing life-limiting illnesses at home, by providing competent care and being present. These teams should therefore be widely available and empowered with the resources to be present and provide competent care.

Past trends and projections of hospital deaths to inform the integration of palliative care in one of the most ageing countries in the world.

BACKGROUND: Monitoring where people die is key to ensure that palliative care is provided in a responsive and integrated way. AIM: To examine trends of place of death and project hospital deaths until 2030 in an ageing country without integrated palliative care. DESIGN: Population-based observational study of mortality with past trends analysis of place of death by gender, age and cause of death. Hospital deaths were projected until 2030, applying three scenarios modelled on 5-year trends (2006-2010). SETTING/PARTICIPANTS: All adult deaths (⩾18 years old) that occurred in Portuguese territory from 1988 to 2010. RESULTS: There were 2,364,932 deceased adults in Portugal from 1988 to 2010. Annual numbers of deaths increased 11.1%, from 95,154 in 1988 to 105,691, mainly due to more than doubling deaths from people aged 85+ years. Hospital deaths increased by a mean of 0.8% per year, from 44.7% (n = 42,571) in 1988 to 61.7% (n = 65,221) in 2010. This rise was largest for those aged 85+ years (27.8% to 54.0%). Regardless of the scenario considered, and if current trends continue, hospital deaths will increase by more than a quarter until 2030 (minimum 27.7%, maximum 52.1% rise) to at least 83,293 annual hospital deaths, mainly due to the increase in hospital deaths in those aged 85+ years. CONCLUSION: In one of the most ageing countries in the world, there is a long standing trend towards hospitalised dying, more pronounced among the oldest old. To meet people's preferences for dying at home, the development of integrated specialist home palliative care teams is needed.

[Epidemiological study of place of death in Portugal in 2010 and comparison with the preferences of the Portuguese population]. / Estudo epidemiológico dos locais de morte em Portugal em 2010 e comparação com as preferências da população Portuguesa.

INTRODUCTION: In the context of a pronounced population ageing and rising mortality due to chronic illnesses, this national epidemiological study compares the places where people die with population preferences. MATERIAL AND METHODS: Data on numbers of deaths in 2010 by gender, age group, region of residence NUTS II and place of death (hospital/clinic, domicile and other) of people with 16+ years old were provided by the Portuguese Statistics Institute. Data on population preferences for place of death were obtained in 2010 in the PRISMA telephone survey. The distribution of deaths by place of death is compared with population preferences, according to independent variables, using descriptive and inferential analysis. RESULTS: There were 105 471 deaths in Portugal in 2010. From these, 61.7% occurred at hospitals/clinics and 29.6% at the domicile. Of the 1 286 residents in Portugal that participated in the PRISMA survey, 51.2% chose home as preferred place of death, 35.7% chose a palliative care unit, 8.9% the hospital and 2.2% a nursing or residential home. DISCUSSION AND CONCLUSION: There is a substantial gap between the reality and population preferences for place of death in Portugal. To better meet these preferences, it is a national priority to develop home palliative care services that prevent the rise of hospital deaths and that support death at home, with quality and whenever wished. It is recommended changing the coding of place of death in Portuguese death certificates, with inclusion of the options 'palliative care unit' and 'nursing or residential home', once citizens' preferences clearly differentiate these places.

Introdução: No contexto de um envelhecimento acentuado da população e aumento da mortalidade por doenças crónicas, este estudo epidemiológico nacional compara os locais onde as pessoas morrem com as preferências da população.Material e Métodos: Dados de óbitos em 2010 por género, grupo etário, região de residência (NUTS II) e local de morte (hospital/clínica, domicílio e outro), em pessoas com 16 anos ou mais, foram cedidos pelo Instituto Nacional de Estatística. Dados de preferências da população para local de morte obtiveram-se em 2010 através do inquérito telefónico PRISMA. Compara-se a distribuição de óbitos por local de morte com as preferências da população, segundo variáveis independentes, através de análise descritiva e inferencial.Resultados: Dos 105 471 óbitos que ocorreram em Portugal em 2010, 61,7% deram-se em hospitais/clínicas e 29,6% no domicílio. Dos 1 286 residentes em Portugal que participaram no inquérito PRISMA, 51,2% expressaram preferência por morrer em casa, 35,7% escolheram uma unidade de cuidados paliativos, 8,9% o hospital e 2,2% lar ou residência.Discussão e Conclusão: Existe um desfasamento substancial entre a realidade e preferências para local de morte em Portugal. Para ir ao encontro destas preferências é prioridade nacional desenvolver serviços de cuidados paliativos domiciliários, que previnam o aumento de óbitos hospitalares e que apoiem a morte em casa, com qualidade e respeitando preferências individuais. Recomenda-se a alteração das categorias de local de óbito no certificado oficial, com inclusão das opções 'unidade de cuidados paliativos' e 'lar ou residência', dado que as preferências dos cidadãos distinguem claramente entre estes locais.

Dying at home--is it better: a narrative appraisal of the state of the science.

BACKGROUND: Achieving home care and home death is increasingly used as an outcome measure of palliative care services. AIM: To appraise the state of the science on dying at home. METHODS: Appraisal and narrative review developed from a plenary presentation at the European Association for Palliative Care (EAPC) 2012 meeting examining the research on variations and trends in place of death, factors associated with dying in the preferred place, presenting evidence on outcomes for those dying at home and suggesting future research questions. RESULTS: Meeting patients' preferences and creating home-like environments has been a major concern for hospice and palliative care since its inception. During the 20(th) century, in many countries, hospital deaths increased and home deaths reduced. Despite the fact that this trend has been halted or reversed in some countries (notably the United States, Canada and, more recently, the United Kingdom) in the last 5-20 years, a home death is still a distant reality for the majority, even though evidence shows it is the most commonly preferred place to die. Epidemiological studies identified factors associated with home death, including affluence, patients' preferences, provision of home care and extended family support. Evidence about the benefits of home care is conflicting, but recent data suggest that holistic well-being may be greater at home. IMPLICATIONS: We call for further analyses of variations in place of care and place of death and robust studies on how patients and families formulate and change preferences over time. Regular monitoring of outcomes, quality and costs of palliative home care is urged.