title: How many people need palliative care? A study developing and comparing methods for population-based estimates.
abstract: BACKGROUND
  Understanding the need for palliative care is essential in planning services.
  
  
  OBJECTIVE
  To refine existing methods of estimating population-based need for palliative care and to compare these methods to better inform their use.
  
  
  METHODS
  (1) Refinement of existing population-based methods, based on the views of an expert panel, and (2) application/comparison of existing and refined approaches in an example dataset. Existing methods vary in approach and in data sources. (a) Higginson used cause of death/symptom prevalence, and using pain prevalence, estimates that 60.28% (95% confidence interval = 60.20%-60.36%) of all deaths need palliative care, (b) Rosenwax used the International Statistical Classification of Diseases and Related Health Problems-10th Revision (ICD-10) causes of death/hospital-use data, and estimates that 37.01% (95% confidence interval = 36.94%-37.07%) to 96.61% (95% confidence interval = 96.58%-96.64%) of deaths need palliative care, and (c) Gómez-Batiste used percentage of deaths plus chronic disease data, and estimates that 75% of deaths need palliative care.
  
  
  METHODS
  All deaths in England, January 2006-December 2008, using linked mortality and hospital episode data.
  
  
  RESULTS
  Expert panel review identified changing practice (e.g. extension of palliative care to more non-cancer conditions), changing patterns of hospital/home care and multiple, rather than single, causes of death as important. We therefore refined methods (using updated ICD-10 causes of death, underlying/contributory causes, and hospital use) to estimate a minimum of 63.03% (95% confidence interval = 62.95%-63.11%) of all deaths needing palliative care, with lower and upper mid-range estimates between 69.10% (95% confidence interval = 69.02%-69.17%) and 81.87% (95% confidence interval = 81.81%-81.93%).
  
  
  CONCLUSIONS
  Death registration data using both underlying and contributory causes can give reliable estimates of the population-based need for palliative care, without needing symptom or hospital activity data. In high-income countries, 69%-82% of those who die need palliative care.
authors.affiliation: 1King's College London, Cicely Saunders Institute, London, UK.
authors.forename: Fliss E M
authors.initials: FE
authors.lastname: Murtagh
authors.forename: Claudia
authors.initials: C
authors.lastname: Bausewein
authors.forename: Julia
authors.initials: J
authors.lastname: Verne
authors.forename: E Iris
authors.initials: EI
authors.lastname: Groeneveld
authors.forename: Yvonne E
authors.initials: YE
authors.lastname: Kaloki
authors.forename: Irene J
authors.initials: IJ
authors.lastname: Higginson
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D002423:Cause of Death; D002648:Child; D002675:Child, Preschool; D002908:Chronic Disease / Q000453:epidemiology* / Q000401:mortality; D004739:England / Q000453:epidemiology; D005260:Female; D006301:Health Services Needs and Demand; D006305:Health Status Indicators; D017052:Hospital Mortality; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D038801:International Classification of Diseases; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D010166:Palliative Care / Q000706:statistics & numerical data*; D011159:Population Surveillance / Q000379:methods*; D012042:Registries; D013727:Terminal Care / Q000706:statistics & numerical data; D055815:Young Adult
keywords: Palliative care; delivery of health care; end-of-life care; health services needs and demand; needs assessment; public health; terminal care