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.publishersversionpublishe

Health metrics:Standardize records of place of death

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Study protocol : evaluation of specialized outpatient palliative care in the German state of Hesse (ELSAH study) – work package I : assessing the quality of care

Background: In Germany, patients suffering from life-limiting conditions are eligible for specialized outpatient palliative care (SOPC). Evaluation of the quality of this service lacks currently integration of patient-relevant outcomes. There is also no scientific consensus how to prove quality of care in the special context of SOPC adequately. Existing quality reports are primarily based on descriptive structural data which do not allow for estimation of process quality or result quality. The ELSAH study ("Evaluation of Specialized Outpatient Palliative Care in the German state of Hesse") aims to choose - or, if necessary, to adopt - to evaluate and to implement a suit of measures to assess, evaluate and monitor the quality of specialized, home-based palliative care. Methods: All 22 SOPC teams providing their services in the state of Hesse, Germany, participate in the ELSAH study. The study is divided in two phases: a preparation phase and a main study phase. Based on the findings of the preparation phase we have chosen a preliminary set of instruments including the Integrated Palliative Outcome Scale, Views on Care, Zarit Burden Interview, Phase of Illness, Goal Attainment Scaling, Eastern Cooperative Oncology Group Performance Status, Consumer Quality Indices Palliative Care and Sense of Security in Care. During the main study phase, we will use a mixed-methods approach to evaluate the instruments’ psychometric properties (reliability, validity, feasibility and practicability), to identify barriers, facilitators and limitations of their routine use and to explore how their use affects the care within the SOPC setting. Discussion: At the end of this study, an outcome- and patient-centered, validated measurement approach should be provided, adapted for standardized evaluations in SOPC across patient groups, palliative care services and regions nationwide. The standardized application of instruments should allow for making valid statements and comparisons of health care quality in SOPC based on process- and outcome-evaluation rather than relying on structural data only. Moreover, the instruments might directly influence the care of patients in palliative situations. Trial registration: German Clinical Trials Register (DRKS-ID: DRKS00012421)