Skip to main content
SpringerLink
Log in

Public Health and Epidemiological Research in Palliative Care

  • Reference work entry
  • First Online:
Book cover Textbook of Palliative Care

  • 144 Accesses

Abstract

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.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Log in via an institution
Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 819.00
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Hardcover Book
USD 1,099.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  • Addington-Hall J. In: Addington-Hall J, Bruera E, Higginson IJ, Payne S, editors. Research methods in palliative care. Oxford: Oxford University Press; 2007.

    Chapter  Google Scholar 

  • Addington-Hall J, McCarthy M. Regional study of care for the dying: methods and sample characteristics. Palliat Med. 1995;9:27–35.

    Article  CAS  PubMed  Google Scholar 

  • 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: https://archive.ahrq.gov/data/safetynet/billings.htm. Accessed 7 Mar 2018.

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  PubMed Central  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  CAS  PubMed  Google Scholar 

  • 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 

  • 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.

    Article  Google Scholar 

  • 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.

    Article  PubMed  PubMed Central  Google Scholar 

  • Cohen J, et al. Population-based study of dying in hospital in six European countries. Palliat Med. 2008;22:702–10.

    Article  CAS  PubMed  Google Scholar 

  • 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.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • Davies JM, et al. Using routine data to improve palliative and end of life care. BMJ Support Palliat Care. 2016;6:257–62.

    Article  PubMed  PubMed Central  Google Scholar 

  • 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.

    Article  Google Scholar 

  • Deckers J, Schellavis F. Health information from primary care: final report December 1, 2001 – March 31, 2004. 2004.

    Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • Earle CC. Identifying potential indicators of the quality of end-of-life cancer care from administrative data. J Clin Oncol. 2003;21:1133–8.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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. https://doi.org/10.1111/jgs.15287.

    Article  PubMed  Google Scholar 

  • Faltermaier T, Faltermaier T. Why public health research needs qualitative approaches. Eur J Pub Health. 1997;7:357–63.

    Article  Google Scholar 

  • Ferré F, et al. Italy: health system review. Health Syst Transit. 2014;16:1–168.

    PubMed  Google Scholar 

  • Fleming DM, Schellevis FG, Paget WJ. Health monitoring in sentinel practice networks. Eur J Pub Health. 2003;13:80–4.

    Article  CAS  Google Scholar 

  • 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.

    Article  PubMed  PubMed Central  Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • Gerkens S, Merkur S. Belgium: health system review. Health Syst Transit. 2010;12:1–266.

    PubMed  Google Scholar 

  • 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.

    Article  CAS  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  PubMed Central  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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. https://doi.org/10.1136/bmjspcare-2016-001288.

    Article  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  CAS  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  CAS  PubMed  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • Murdoch TB, Detsky AS. The inevitable application of big data to health care. JAMA. 2013;309:1351.

    Article  CAS  PubMed  Google Scholar 

  • Murtagh FE, et al. How many people need palliative care? A study developing and comparing methods for population-based estimates. Palliat Med. 2013. https://doi.org/10.1177/0269216313489367.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  Google Scholar 

  • Pivodic L, Higginson IJ, Sarmento VP, Gomes B. Health metrics: standardize records of place of death. Nature. 2013;495:449.

    PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  PubMed Central  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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 

  • 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.

    Article  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • Schäfer W, et al. The Netherlands: health system review. Health Syst Transit. 2010;12:1–229.

    Google Scholar 

  • 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.

    Article  PubMed  PubMed Central  Google Scholar 

  • 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 

  • Tavares T, et al. Predicting prognosis in patients with advanced cancer: a prospective study. Palliat Med. 2018;32:413–6.

    Article  PubMed  Google Scholar 

  • 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.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • 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.

    Article  PubMed  PubMed Central  Google Scholar 

  • 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. https://doi.org/10.1093/eurpub/ckv039.

    Article  PubMed  Google Scholar 

  • 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.

    Article  Google Scholar 

  • van der Heide A, et al. End-of-life decision-making in six European countries: descriptive study. Lancet. 2003;362:345–50.

    Article  PubMed  Google Scholar 

  • 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.

    Article  Google Scholar 

  • Vega T, et al. Guide to the principles and methods of health sentinel networks in Spain. Gac Sanit. 2006;20:52–60.

    Article  Google Scholar 

  • WHO. WHO Definition of palliative care. 2002.

    Google Scholar 

  • 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.

    Article  Google Scholar 

  • World Health Organization. Constitution of WHO: principles. 2018. Available at: http://www.who.int/about/mission/en/. Accessed 4th Apr 2018.

  • 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.

    Article  PubMed  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Brussels, Belgium

    Lara Pivodic & Joachim Cohen

Authors
  1. Lara Pivodic
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Joachim Cohen
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Lara Pivodic .

Editor information

Editors and Affiliations

  1. School of Medicine,Palliative Care, HammondCare, The University of Sydney School of Medicine, Sydney, Australia

    Roderick Duncan MacLeod

  2. VUB-UGhent End-of-Life Care Research Group, Department of Family Medicine and Chronic Care and Department of Clinical Sciences, Vrije Universiteit Brussel (VUB), Brussels, Belgium

    Lieve Van den Block

Rights and permissions

Reprints and permissions

Copyright information

© 2019 Springer Nature Switzerland AG

About this entry

Check for updates. Verify currency and authenticity via CrossMark

Cite this entry

Pivodic, L., Cohen, J. (2019). Public Health and Epidemiological Research in Palliative Care. In: MacLeod, R., Van den Block, L. (eds) Textbook of Palliative Care. Springer, Cham. https://doi.org/10.1007/978-3-319-77740-5_106

Download citation

Publish with us

Policies and ethics

Search

Navigation