Public Health and Epidemiological Research in Palliative Care

  • Lara PivodicEmail author
  • Joachim Cohen
Reference work entry


Palliative care has been declared an important topic for public health. In turn, concepts of public health such as health promotion are highly relevant for populations in need of palliative care. In recent decades, public health and epidemiological research methods have been applied to study the circumstances of dying, including palliative care provision, in large communities or populations. This chapter starts by outlining several characteristics that distinguish public health from clinical research in palliative care. It subsequently gives an illustrative, rather than exhaustive, overview of several different methodological approaches that have been used in public health research in palliative care, as well as their advantages and limitations. The focus is on quantitative, epidemiological methods, which reflects the current dominant approach in public health research. These include population-based survey research and specifically the mortality follow-back design, the use of death certificate data to study place of death, studies of routinely collected administrative data on the population-level, and the use of existing epidemiological monitoring tools. Finally, the chapter describes the importance and contributions of qualitative and mixed methods public health research in palliative care. It does so by describing examples of community-centered palliative care initiatives and research in less visible populations. Acknowledging that no single of these methods can answer all relevant questions about a topic, this chapter argues that it is the combination of a diverse set of research methodologies that will lead to the best possible view on and understanding of the circumstances of dying and provision of palliative care in populations.


  1. Addington-Hall J. In: Addington-Hall J, Bruera E, Higginson IJ, Payne S, editors. Research methods in palliative care. Oxford: Oxford University Press; 2007.CrossRefGoogle Scholar
  2. Addington-Hall J, McCarthy M. Regional study of care for the dying: methods and sample characteristics. Palliat Med. 1995;9:27–35.PubMedCrossRefGoogle Scholar
  3. Billings J. Using administrative data to monitor access, identify disparities, and assess performance of the safety net. Agency for Healthcare Research and Quality; U.S. Department of Health and Human Services. 2003. Available at: Accessed 7 Mar 2018.
  4. Burger EH, et al. Validation study of cause of death statistics in Cape Town, South Africa, found poor agreement. J Clin Epidemiol. 2012;65:309–16.PubMedCrossRefGoogle Scholar
  5. Burt J, Shipman C, Richardson A, Ream E, Addington-Hall J. The experiences of older adults in the community dying from cancer and non-cancer causes: a national survey of bereaved relatives. Age Ageing. 2010;39:86–91.PubMedCrossRefGoogle Scholar
  6. Chambaere K, et al. A post-mortem survey on end-of-life decisions using a representative sample of death certificates in Flanders, Belgium: research protocol. BMC Public Health. 2008;8:299.PubMedPubMedCentralCrossRefGoogle Scholar
  7. Chambaere K, Cohen J, Robijn L, Bailey SK, Deliens L. End-of-life decisions in individuals dying with dementia in Belgium. J Am Geriatr Soc. 2015a;63:290–6.PubMedCrossRefGoogle Scholar
  8. Chambaere K, Vander Stichele R, Mortier F, Cohen J, Deliens L. Recent trends in euthanasia and other end-of-life practices in Belgium. N Engl J Med. 2015b;372:1179–81.PubMedCrossRefGoogle Scholar
  9. Cohen J, Deliens L. In: Cohen J, Deliens L, editors. A public health perspective on end of life care. Oxford: Oxford University Press; 2011. p. 3–18.Google Scholar
  10. Cohen J, et al. End-of-life decision-making in Belgium, Denmark, Sweden and Switzerland: does place of death make a difference. J Epidemiol Commun Health. 2007a;61:1062–8.CrossRefGoogle Scholar
  11. Cohen J, et al. Using death certificate data to study place of death in 9 European countries: opportunities and weaknesses. BMC Public Health. 2007b;7:283.PubMedPubMedCentralCrossRefGoogle Scholar
  12. Cohen J, et al. Population-based study of dying in hospital in six European countries. Palliat Med. 2008;22:702–10.PubMedCrossRefGoogle Scholar
  13. Cohen J, et al. International study of the place of death of people with cancer: a population-level comparison of 14 countries across 4 continents using death certificate data. Br J Cancer. 2015;113:1397–404.PubMedPubMedCentralCrossRefGoogle Scholar
  14. Davies JM, et al. Using routine data to improve palliative and end of life care. BMJ Support Palliat Care. 2016;6:257–62.PubMedPubMedCentralCrossRefGoogle Scholar
  15. De Schreye R, et al. Applying quality indicators for administrative databases to evaluate end-of-life care for cancer patients in Belgium. Health Aff. 2017;36:1234–43.CrossRefGoogle Scholar
  16. Deckers J, Schellavis F. Health information from primary care: final report December 1, 2001 – March 31, 2004. 2004.Google Scholar
  17. Devroey D, Van Casteren V, Buntinx F. Registration of stroke through the Belgian sentinel network and factors influencing stroke mortality. Cerebrovasc Dis. 2003;16:272–9.PubMedCrossRefGoogle Scholar
  18. Dierickx S, Deliens L, Cohen J, Chambaere K. Involvement of palliative care in euthanasia practice in a context of legalized euthanasia: a population-based mortality follow-back study. Palliat Med. 2018;32:114–22.PubMedCrossRefGoogle Scholar
  19. Earle CC. Identifying potential indicators of the quality of end-of-life cancer care from administrative data. J Clin Oncol. 2003;21:1133–8.PubMedCrossRefGoogle Scholar
  20. Earle CC, Ayanian JZ. Looking back from death: the value of retrospective studies of end-of-life care. J Clin Oncol. 2006;24:838–40.PubMedCrossRefGoogle Scholar
  21. Evans N, et al. End-of-life communication: a retrospective survey of representative general practitioner networks in four countries. J Pain Symptom Manag. 2014;47:604–19.CrossRefGoogle Scholar
  22. Faes K, Cohen J, Annemans L. Resource use during the last 6 months of life of individuals dying with and of Alzheimer’s disease. J Am Geriatr Soc. 2018. Scholar
  23. Faltermaier T, Faltermaier T. Why public health research needs qualitative approaches. Eur J Pub Health. 1997;7:357–63.CrossRefGoogle Scholar
  24. Ferré F, et al. Italy: health system review. Health Syst Transit. 2014;16:1–168.PubMedGoogle Scholar
  25. Fleming DM, Schellevis FG, Paget WJ. Health monitoring in sentinel practice networks. Eur J Pub Health. 2003;13:80–4.CrossRefGoogle Scholar
  26. Gao W, Ho YK, Verne J, Glickman M, Higginson IJ. Changing patterns in place of cancer death in England: a population-based study. PLoS Med. 2013;10:e1001410.PubMedPubMedCentralCrossRefGoogle Scholar
  27. García-Armesto S, Abadía-Taira MB, Durán A, Hernández-Quevedo C, Bernal-Delgado E. Spain: health system review. Health Syst Transit. 2010;12:1–295.PubMedGoogle Scholar
  28. Gerkens S, Merkur S. Belgium: health system review. Health Syst Transit. 2010;12:1–266.PubMedGoogle Scholar
  29. Glasgow RE, et al. If diabetes is a public health problem, why not treat it as one? A population-based approach to chronic illness. Ann Behav Med. 1999;21:159–70.PubMedCrossRefGoogle Scholar
  30. Houttekier D, et al. Place of death of older persons with dementia. A study in five European countries. J Am Geriatr Soc. 2010;58:751–6.PubMedCrossRefGoogle Scholar
  31. Houttekier D, Cohen J, Surkyn J, Deliens L. Study of recent and future trends in place of death in Belgium using death certificate data: a shift from hospitals to care homes. BMC Public Health. 2011;11:228.PubMedPubMedCentralCrossRefGoogle Scholar
  32. Hunt KJ, Shlomo N, Addington-Hall J. End-of-life care and preferences for place of death among the oldest old: results of a population-based survey using VOICES-Short Form. J Palliat Med. 2014;17:176–82.PubMedCrossRefGoogle Scholar
  33. Hunt KJ, Richardson A, Darlington A-SE, Addington-Hall JM. Developing the methods and questionnaire (VOICES-SF) for a national retrospective mortality follow-back survey of palliative and end-of-life care in England. BMJ Support Palliat Care . bmjspcare-2016-001288. 2017. Scholar
  34. Jack BA, Kirton J, Birakurataki J, Merriman A. ‘A bridge to the hospice’: the impact of a community volunteer programme in Uganda. Palliat Med. 2011;25:706–15.PubMedCrossRefGoogle Scholar
  35. Klinkenberg M, et al. Proxy reporting in after-death interviews: the use of proxy respondents in retrospective assessment of chronic diseases and symptom burden in the terminal phase of life. Palliat Med. 2003;17:191–201.PubMedCrossRefGoogle Scholar
  36. Ko W, et al. Awareness of general practitioners concerning cancer patients’ preferences for place of death: evidence from four European countries. Eur J Cancer. 2013;49:1967–74.PubMedCrossRefGoogle Scholar
  37. Lobet MP, et al. Tool for validation of the network of sentinel general practitioners in the Belgian health care system. Int J Epidemiol. 1987;16:612–8.PubMedCrossRefGoogle Scholar
  38. Maetens A, et al. Using linked administrative and disease-specific databases to study end-of-life care on a population level. BMC Palliat Care. 2016;15:1–10.CrossRefGoogle Scholar
  39. Meeussen K, et al. End-of-life care and circumstances of death in patients dying as a result of cancer in Belgium and the Netherlands: a retrospective comparative study. J Clin Oncol. 2011;29:4327–34.PubMedCrossRefGoogle Scholar
  40. Murdoch TB, Detsky AS. The inevitable application of big data to health care. JAMA. 2013;309:1351.PubMedCrossRefGoogle Scholar
  41. Murtagh FE, et al. How many people need palliative care? A study developing and comparing methods for population-based estimates. Palliat Med. 2013. Scholar
  42. Penders YW, Gilissen J, Moreels S, Deliens L, Van den Block L. Palliative care service use by older people: time trends from a mortality follow-back study between 2005 and 2014. Palliat Med. 2018;32:466–75.PubMedCrossRefGoogle Scholar
  43. Perera G, Stewart R, Higginson IJ, Sleeman KE. Reporting of clinically diagnosed dementia on death certificates: retrospective cohort study. Age Ageing. 2016;45:667–72.CrossRefGoogle Scholar
  44. Pivodic L, Higginson IJ, Sarmento VP, Gomes B. Health metrics: standardize records of place of death. Nature. 2013;495:449.PubMedGoogle Scholar
  45. Pivodic L, et al. Place of death in the population dying from diseases indicative of palliative care need: a cross-national population-level study in 14 countries. J Epidemiol Community Health. 2015;70:17–24.PubMedCrossRefGoogle Scholar
  46. Pivodic L, et al. Home care by general practitioners for cancer patients in the last 3 months of life: an epidemiological study of quality and associated factors. Palliat Med. 2016a;30:64.PubMedPubMedCentralCrossRefGoogle Scholar
  47. Pivodic L, et al. Hospitalisations at the end of life in four European countries: a population-based study via epidemiological surveillance networks. J Epidemiol Community Health. 2016b;70:430–6.PubMedCrossRefGoogle Scholar
  48. Pivodic L, et al. Place of death in the population dying from diseases indicative of palliative care need: a cross-national population-level study in 14 countries. J Epidemiol Community Health. 2016c;70:17–24.PubMedCrossRefGoogle Scholar
  49. Pivodic L et al. Quality of dying and quality of end-of-life care of nursing home residents in six countries: an epidemiological study. Palliat Med. In press. 2018.Google Scholar
  50. Sallnow L, Tishelman C, Lindqvist O, Richardson H, Cohen J. Research in public health and end-of-life care – building on the past and developing the new. Prog Palliat Care. 2016a;24:25–30.CrossRefGoogle Scholar
  51. Sallnow L, Richardson H, Murray SA, Kellehear A. The impact of a new public health approach to end-of-life care: a systematic review. Palliat Med. 2016b;30:200–11.PubMedCrossRefGoogle Scholar
  52. Schäfer W, et al. The Netherlands: health system review. Health Syst Transit. 2010;12:1–229.Google Scholar
  53. Sleeman KE, et al. Reversal of English trend towards hospital death in dementia: a population-based study of place of death and associated individual and regional factors, 2001–2010. BMC Neurol. 2014;14:59.PubMedPubMedCentralCrossRefGoogle Scholar
  54. Smets T et al. The palliative care knowledge of nursing home staff: The EU FP7 PACE cross-sectional survey in 322 nursing homes in six European countries. Palliat Med. In press. 2018.Google Scholar
  55. Tavares T, et al. Predicting prognosis in patients with advanced cancer: a prospective study. Palliat Med. 2018;32:413–6.PubMedCrossRefGoogle Scholar
  56. Teno JM, et al. Change in end-of-life care for Medicare beneficiaries: site of death, place of care, and health care transitions in 2000, 2005, and 2009. JAMA. 2013;309:470–7.PubMedPubMedCentralCrossRefGoogle Scholar
  57. Van den Block L, Deschepper R, Bilsen J, Van Casteren V, Deliens L. Transitions between care settings at the end of life in Belgium. JAMA. 2007;298:1638–9.PubMedGoogle Scholar
  58. Van den Block L, et al. Nationwide continuous monitoring of end-of-life care via representative networks of general practitioners in Europe. BMC Fam Pract. 2013;14:73.PubMedPubMedCentralCrossRefGoogle Scholar
  59. Van den Block L, et al. Transitions between health care settings in the final three months of life in four EU countries. Eur J Pub Health. 2015. Scholar
  60. Van den Block L, et al. Comparing palliative care in care homes across Europe (PACE): protocol of a cross-sectional study of deceased residents in 6 EU countries. J Am Med Dir Assoc. 2016;17:566.e1–7.CrossRefGoogle Scholar
  61. van der Heide A, et al. End-of-life decision-making in six European countries: descriptive study. Lancet. 2003;362:345–50.PubMedCrossRefGoogle Scholar
  62. Van Der Maas PJ, Van Delden JJ, Pijnenborg L, Looman CW. Euthanasia and other medical decisions concerning the end of life. Lancet. 1991;338:669–74.CrossRefGoogle Scholar
  63. Vega T, et al. Guide to the principles and methods of health sentinel networks in Spain. Gac Sanit. 2006;20:52–60.CrossRefGoogle Scholar
  64. WHO. WHO Definition of palliative care. 2002.Google Scholar
  65. Williams L, et al. Can digital stories go where palliative care research has never gone before? A descriptive qualitative study exploring the application of an emerging public health research method in an indigenous palliative care context. BMC Palliat Care. 2017;16:1–9.CrossRefGoogle Scholar
  66. World Health Organization. Constitution of WHO: principles. 2018. Available at: Accessed 4th Apr 2018.
  67. Young AJ, Rogers A, Dent L, Addington-Hall JM. Experiences of hospital care reported by bereaved relatives of patients after a stroke: a retrospective survey using the VOICES questionnaire. J Adv Nurs. 2009;65:2161–274.PubMedCrossRefGoogle Scholar

Copyright information

© Springer Nature Switzerland AG 2019

Authors and Affiliations

  1. 1.End-of-Life Care Research GroupVrije Universiteit Brussel (VUB) and Ghent UniversityBrusselsBelgium

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