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End of Life

The last years of life tend to be the most medically intensive and expensive for healthcare systems. It is a time when hard choices have to be made. The focus of end of life care is on making patients feel comfortable rather than curing them.

Health Status

Aggregate data

  • Austria: Statistics Austria reports on causes of death (according to ICD-10-Codes since 1970), by region pfeil zu
  • Austria: ÖGIS (the Austrian Health Information System) is an instrument of health reporting organized as a geographic information system. It provides data on all epidemiological key themes (e.g. life expectancy, mortality, cancer incidence, self-reported health) and demographic data (based on e.g. National birth registers). pfeil zu
  • Finland: Statistics Finland reports on causes of death (according to ICD-10-Codes), life expectancy and selected indicators for health status. pfeil zu
  • Finland: SOTKAnet (THL) provides data on demographic variables and healthcare provision at regional level as well as epidemiological key themes (e.g. life expectancy, mortality, cancer incidence, self-reported health). The use of elderly care (nursing homes, home care) services are reported.
  • France: INSEE (National Institute of Statistics and Economic Studies), demographic data on mortality.
  • France: CépiDc, death causes are reported by the national medical research center network INSERM.
  • Germany: Federal Health Reporting System delivers national and regional aggregated data on mortality and causes of death, old age and health, concequences of ilness, etc.
  • Germany: German Center of Geronotlogy (DZA) offers a Statistical Information System GeroStat, which covers an online service for illustrating gerontological and demographic issues emphasising old age living conditions and problems of ageing population.
  • United Kingdom: Vital Statistics has demographic data on age-standardized mortality rates, births, age-specific fertility rates and life expectancy.
  • United Kingdom: The NHS Information Centre provides data on mortality rates aggregated by hospital.

Individual level data

  •  Austria: Statistics Austria maintains records of birth, marriages, causes of death and mortality data. pfeil zu
  • Finland: Statistics Finland maintains records on the causes of death and mortality data pfeil zu
  • Finland: Finnish Cancer Registry is a complete census of all cancer patients. pfeil zu
  • Finland: The “Finnish Health Interview Survey 2000/2011” and the FINRISK survey administered by THL provides detailed information on self-perceived health, chronic diseases and mental conditions, life quality, health impairment in a periodically conducted survey.pfeil zu
  • United Kingdom: The British Household Panel Survey (BHPS) collects individual level information on perceived health, life quality and health a continuous survey. pfeil zu
  • United Kingdom: The English Longitudinal Study of Ageing (ELSA) is a longitudinal survey of ageing and quality of life among older people that contains information on health, disabilities, healthy life expectancy and physical and cognitive health. 
    pfeil zu

Quality (valued outcomes)

Aggregate data

  •  Austria: Statistics Austria reports on cancer survival (1-, 5-, 10- and 15- year cumulative relative survival by sex since 1985)

Individual level data

  •  Austria: National Cancer Registry maintained by Statistics Austria, contains information on diagnoses and mortality pfeil zu
  • Finland: Finnish Cancer Registry maintained by THL contains information on diagnoses and mortality pfeil zu
  • Finland: The national discharge register provides patient information including diagnoses and treatments for adverse effects, and deaths within a hospital or institution giving inpatient treatment. pfeil zu
  • Finland: The Finnish Patient Insurance Centre handles the compensation procedures for patient injuries that occur in Finland and maintain a database which includes all these incidents.
  • United Kingdom: CancerStats has individual information on cancer incidence and survival rates. Information is available at a national level and since 2002. The sample is all cancer diagnosed patients in the UK. pfeil zu

Efficiency / Economy

Physical Inputs (infrastructure)

Aggregate data

  • France: Statistique Annuelle des Etablissements, which is a complete census of public and private (for profit and not for profit) hospitals since 2004, provided by the Ministry of Health. The primary data source for hospital infrastructure and equipment, including data on care infrastructure and supply for end of life -"soins palliatifs". Limited data (availability of end of life care, type, capacity) is available in aggregate -"Cumulé" (select all in ">5:Etablissement") and breakdown by region or by county -"département"; end of life specific data set is located in table "PN" -">6. Restitution: Type de restitution: Bordereaux: PN". pfeil zu

Individual level data

  • France: Statistique Annuelle des Etablissements, which is a complete census of public and private (for profit and not for profit) hospitals since 2004, provided by the Ministry of Health. The primary data source for hospital infrastructure and equipment, including data on care infrastructure and supply for end of life -"soins palliatifs". Limited data (availability of end of life care, type, capacity) is available as individual data by structure (select in ">5:Etablissement"); end of life specific data set is located in table "PN" -">6. Restitution: Type de restitution: Bordereaux: PN". pfeil zu

Activity/Utilization

Aggregate data

  • Finland: SOTKAnet provides data on the frequency of consultations of primary care physicians and other personnel, hospital discharges and bed-days, the use of long-term care and nursing home including average length of stay, all by region pfeil zu
  • Finland: KELASTO database provides provides annual data on drug reimbursements, sickness leave, rehabilitation and other allowances pfeil zu
  • Finland: Hospital benchmarking database (THL) (hospitals in figures): hospital, hospital specialty unit and regional level data is available for various indicators for activity/utilization: DRGs, bed-days, discharges,outpatient visits pfeil zu
  • France: Statistique Annuelle des Etablissements, which is a complete census of public and private (for profit and not for profit) hospitals since 2004, provided by the Ministry of Health. The primary data source for hospital infrastructure and equipment, including data on care infrastructure and supply for end of life -"soins palliatifs". Limited data (number of patients per care unit, unit type) is available in aggregate -"Cumulé" (first select all in ">5:Etablissement") and breakdown by region, by county -"département" or by structure -"Individuel" (select in ">5:Etablissement"); end of life specific data set is located in table "PN" -">6. Restitution: Type de restitution: Bordereaux: PN". pfeil zu
  • United Kingdom: The Office for National Statistics (ONS) provides overall measure of end of life care utilization.

Individual level data

  • Finland: The Finnish Health Interview Survey “TERVEYS 2000/2011” and FinRISK survey administered by THL provides detailed information on self-perceived health, chronic diseases and mental conditions, life quality, health impairment. pfeil zu
  • Finland: The national discharge register and the hospital benchmarking database (THL) contain key inpatient and outpatient data abstractions from the operative systems in hospitals (length of stay, in which ward etc.), patient (age, gender etc.) and medical data (main and additional diagnoses, selected treatment pfeil zu
  • Finland: AVOHILMO (THL) provides data for all patient encounters within the publicly provided primary care (primary health care centers) in Finland since 2011. pfeil zu
  • Finland:The sosiaalihilmo (social care discharge register, THL) contain key inpatient data abstractions from the social care operative systems (length of stay, in which ward etc.), patient (age, gender etc.)
  • France: PMSI hospital database maintained by ATIH (Technical Agency for Hospital Information). Data on hospitals' activity by case mix (DRG system). Data is available for end of life care -"soins palliatifs", as part of PMSI-SSR database, from 2000. pfeil zu
  • United Kingdom: HES database contains details of all admissions to NHS hospitals in England. It contains aggregate and individual information on end of life care. pfeil zu

Cost and Expenditure

Aggregate data

  • Finland: KELASTO database reports the payments for reimbursed drugs, rehabilitation, private health care services,sickness absence day and other special benefits reimbursed by the social security. pfeil zu
  • Finland: SOTKAnet (hospitals in figures) provides data on costs by region. Data covers total costs and cost for primary care, hospital care and social care per capita. pfeil zu
  • Finland: The hospital benchmarking database (THL) contains hospital and hospital specialty level total operating costs which can be obtained by age groups. pfeil zu
  • France: Etude Nationale des Coûts (National Costs Study) since 2000, as a result of the introduction of PMSI-SSR (see individual level data section below), publishes reports including limited insight in end of life care cost at patient level with daily cost data from about 90 volunteer public and private hospitals. It is used to calculate DRG cost-weights. pfeil zu
  • United Kingdom: The PSSRU holds data on unit costs of health and social care. Based on administrative data and considers all NHS costs.

Individual level data

  • Finland: The hospital benchmarking database (THL) contains patient level bottom-up based cost accounting data for ca. 30% all hospital inpatient and outpatient care in the country. National DRG cost weights are based on these data. pfeil zu
  • France: Etude Nationale des Coûts (National Costs Study): patient level cost data from about 90 volunteer public and private hospitals. It is used to calculate DRG cost-weights. pfeil zu
  • France: SNIIR-AM reimbursement database of the National Health Insurance Fund. Public expenditure in private hospitals (fee for service payments), excluding private out-of-pockets payments pfeil zu
  • France: PMSI hospital database maintained by ATIH (Technical Agency for Hospital Information). Data on hospitals' activity by case mix (DRG system). Data is available for end of life care -"soins palliatifs", as part of PMSI-SSR database, from 2000. pfeil zu
  • United Kingdom: HES database contains details of all admissions to NHS hospitals and the costs of end of life care. pfeil zu

Health System Design and Context

Austria | Estonia | Finland | France | Germany | Israel | Luxembourg | United Kingdom

International Projects  & Data

Projects

RARECARE | EUROCARE Project | ONCOPOOL