Access to Palliative Care

  • Tony RyanEmail author
Reference work entry


Access to palliative services is currently an important issue facing policy makers around the globe. Much of this discussion is centerd on the significant challenges facing the developing nations and how health care leaders are seeking to integrate high-quality palliative care. But inequality of access is also apparent within developed health care economies. This chapter addresses some of these challenges as they are experienced by those suffering from nonmalignant conditions. Using two case-studies, the chapter highlights evidence that draws attention to the ways in which people with dementia and those experiencing Chronic Obstructive Pulmonary Disorder (COPD) are often excluded from palliative provision.


  1. Adeloye D, Chua S, Lee C, Basquill C, Papana A, Theodoratou E, Nair H, Gasevic D, Sridhar D, Campbell H, Chan KY. Global and regional estimates of COPD prevalence: systematic review and meta–analysis. J Glob Health. 2015;5(2):020415.Google Scholar
  2. Ahmadi Z, Lundström S, Janson C, Strang P, Emtner M, Currow DC, Ekström M. End-of-life care in oxygen-dependent COPD and cancer: a national population-based study. Eur Respir J. 2015;1;46(4):1190–3.CrossRefGoogle Scholar
  3. Birch D, Draper J. A critical literature review exploring the challenges of delivering effective palliative care to older people with dementia. J Clin Nurs. 2008;1;17(9):1144–63.CrossRefGoogle Scholar
  4. Boland J, Johnson MJ. End-of-life care for non-cancer patients. BMJ Support Palliat Care. 2013;3:2–3.PubMedCrossRefGoogle Scholar
  5. Brennan F. Palliative care as an international human right. J Pain Symptom Manag. 2007;31;33(5):494–9.CrossRefGoogle Scholar
  6. Brinkman-Stoppelenburg A, Rietjens JA, van der Heide A. The effects of advance care planning on end-of-life care: a systematic review. Palliat Med. 2014;28(8):1000–25.PubMedCrossRefGoogle Scholar
  7. Brown CE, Jecker NS, Curtis JR. Inadequate palliative care in chronic lung disease. An issue of health care inequality. Ann Am Thorac Soc. 2016;13(3):311–6.PubMedPubMedCentralCrossRefGoogle Scholar
  8. Dixon J, King D, Matosevic T, Clark M, Knapp M. Equity in the provision of palliative care in the UK: review of evidence. London: Personal Social Services Research Unit, London School of Economics and Political Science; 2015.Google Scholar
  9. Duenk RG, Verhagen SC, Janssen MA, Dekhuijzen RP, Vissers KC, Engels Y, Heijdra Y. Consistency of medical record reporting of a set of indicators for proactive palliative care in patients with chronic obstructive pulmonary disease: a pilot study. Chron Respir Dis. 2017;14(1):63–71.PubMedCrossRefGoogle Scholar
  10. Gadoud A, Jenkins SM, Hogg KJ. Palliative care for people with heart failure: summary of current evidence and future direction. Palliat Med. 2013;27(9):822–8.PubMedCrossRefGoogle Scholar
  11. Gardiner C, Ingleton C, Gott M, Ryan T. Exploring the transition from curative care to palliative care: a systematic review of the literature. BMJ Support Palliat Care. 2011;1(1):56–63.PubMedCrossRefGoogle Scholar
  12. Gardiner C, Gott M, Ingleton C, Seymour J, Cobb M, Noble B, Bennett M, Ryan T. Extent of palliative care need in the acute hospital setting: a survey of two acute hospitals in the UK. Palliat Med. 2013;27(1):76–83.PubMedCrossRefGoogle Scholar
  13. Gott M, Seymour J, Ingleton C, Gardiner C, Bellamy G. “That’s part of everybody’s job”: the perspectives of health care staff in England and New Zealand on the meaning and remit of palliative care. Palliat Med. 2012;26(3):232–41.PubMedCrossRefGoogle Scholar
  14. Hajizadeh N, Goldfeld K, Crothers K. What happens to patients with COPD with long-term oxygen treatment who receive mechanical ventilation for COPD exacerbation? A 1-year retrospective follow-up study. Thorax. 2015;70(3):294–6.PubMedCrossRefGoogle Scholar
  15. Harding R, Epiphaniou E, Chidgey-Clark J. Needs, experiences, and preferences of sexual minorities for end-of-life care and palliative care: a systematic review. J Palliat Med. 2012;15(5):602–11.PubMedCrossRefGoogle Scholar
  16. Hendriks SA, Smalbrugge M, Galindo-Garre F, Hertogh CM, van der Steen JT. From admission to death: prevalence and course of pain, agitation, and shortness of breath, and treatment of these symptoms in nursing home residents with dementia. J Am Med Dir Assoc. 2015;16(6):475–81.PubMedCrossRefGoogle Scholar
  17. Hynes G, Kavanagh F, Hogan C, Ryan K, Rogers L, Brosnan J, Coghlan D. Understanding the challenges of palliative care in everyday clinical practice: an example from a COPD action research project. Nurs Inq. 2015;22(3):249–60.PubMedCrossRefGoogle Scholar
  18. Iliffe S, Davies N, Vernooij-Dassen M, van Riet Paap J, Sommerbakk R, Mariani E, Jaspers B, Radbruch L, Manthorpe J, Maio L, Haugen D. Modelling the landscape of palliative care for people with dementia: a European mixed methods study. BMC Palliat Care. 2013;12(1):30.PubMedPubMedCentralCrossRefGoogle Scholar
  19. Kaufman S. And a time to die: how American hospitals shape the end of life. Chicago: University of Chicago Press; 2015.Google Scholar
  20. Lee M, Chodosh J. Dementia and life expectancy: what do we know? J Am Med Dir Assoc. 2009;10(7):466–71.PubMedCrossRefGoogle Scholar
  21. Lewis JM, DiGiacomo M, Currow DC, Davidson PM. Dying in the margins: understanding palliative care and socioeconomic deprivation in the developed world. J Pain Symptom Manag. 2011;42(1):105–18.CrossRefGoogle Scholar
  22. Lovell A, Yates P. Advance care planning in palliative care: a systematic literature review of the contextual factors influencing its uptake 2008–2012. Palliat Med. 2014;28(8):1026–35.PubMedCrossRefGoogle Scholar
  23. Lynch T, Connor S, Clark D. Mapping levels of palliative care development: a global update. J Pain Symptom Manag. 2013;1;45(6):1094–106.CrossRefGoogle Scholar
  24. Marsella A. Exploring the literature surrounding the transition into palliative care: a scoping review. Int J Palliat Nurs. 2009;15(4):186–189.PubMedCrossRefGoogle Scholar
  25. Murray SA, Kendall M, Boyd K, Sheikh A. Illness trajectories and palliative care. BMJ: Br Med J. 2005;330(7498):1007.CrossRefGoogle Scholar
  26. Nakanishi M, Nakashima T, Shindo Y, Miyamoto Y, Gove D, Radbruch L, van der Steen JT. An evaluation of palliative care contents in national dementia strategies in reference to the European Association for Palliative Care white paper. Int Psychogeriatr. 2015;27(9):1551–61.PubMedCrossRefGoogle Scholar
  27. Patel K, Janssen DJ, Curtis JR. Advance care planning in COPD. Respirology. 2012;17(1):72–8.PubMedCrossRefGoogle Scholar
  28. Prince M, Bryce R, Albanese E, Wimo A, Ribeiro W, Ferri CP. The global prevalence of dementia: a systematic review and meta-analysis. Alzheimers Dement. 2013;9(1):63–75.PubMedCrossRefGoogle Scholar
  29. Riggs A, Breuer B, Dhingra L, Chen J, Hiney B, McCarthy M, Portenoy RK, Knotkova H. Hospice enrolment after referral to community-based, specialist-level palliative care: incidence, timing, and predictors. J Pain Symptom Manag. 2016;52(2):170–7.CrossRefGoogle Scholar
  30. Rocker GM, Dodek PM, Heyland DK. Canadian researchers at the end of life network. Toward optimal end-of-life care for patients with advanced chronic obstructive pulmonary disease: insights from a multicentre study. Can Respir J. 2008;15(5):249–54.PubMedPubMedCentralCrossRefGoogle Scholar
  31. Rush B, Hertz P, Bond A, McDermid RC, Celi LA. Use of palliative care in patients with end-stage COPD and receiving home oxygen: national trends and barriers to care in the United States. Chest J. 2017;151(1):41–6.CrossRefGoogle Scholar
  32. Ryan T. The advance care planning experiences of people with dementia, family caregivers and professionals: a synthesis of the qualitative literature. Ann Palliat Med. 2017;6(4):380–9.PubMedCrossRefGoogle Scholar
  33. Ryan T, Gardiner C, Bellamy G, Gott M, Ingleton C. Barriers and facilitators to the receipt of palliative care for people with dementia: the views of medical and nursing staff. Palliat Med. 2012;26(7):879–86.PubMedCrossRefGoogle Scholar
  34. Ryan T, Ingleton C, Gardiner C, Parker C, Gott M, Noble B. Symptom burden, palliative care need and predictors of physical and psychological discomfort in two UK hospitals. BMC Palliat Care. 2013;12(1):11.PubMedPubMedCentralCrossRefGoogle Scholar
  35. Sampson EL. Palliative care for people with dementia. Br Med Bull. 2010;96(1):159–74.PubMedCrossRefGoogle Scholar
  36. Sampson EL, Candy B, Jones L. Enteral tube feeding for older people with advanced dementia. The Cochrane Library. 2009; Issue 2.Google Scholar
  37. Seymour J, Gott M. The challenges of health technology for ageing and dying. In: Gott M, Ingleton I, editors. Living with ageing and dying: palliative and end of life care for older people. Oxford: Oxford University Press; 2011. p. 42–51.Google Scholar
  38. Small N, Froggatt K, Downs M. Living and dying with dementia: dialogues about palliative care. Oxford: Oxford University Press; 2007.CrossRefGoogle Scholar
  39. Szekendi MK, Vaughn J, Lal A, Ouchi K, Williams MV. The prevalence of inpatients at 33 US hospitals appropriate for and receiving referral to palliative care. J Palliat Med. 2016;19(4):360–72.PubMedCrossRefGoogle Scholar
  40. van der Steen JT, Radbruch L, Hertogh CM, de Boer ME, Hughes JC, Larkin P, Francke AL, Jünger S, Gove D, Firth P, Koopmans RT. White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care. Palliat Med. 2014;28(3):197–209.PubMedCrossRefGoogle Scholar
  41. Vermylen JH, Szmuilowicz E, Kalhan R. Palliative care in COPD: an unmet area for quality improvement. Int J Chron Obstruct Pulmon Dis. 2015;10:1543.PubMedPubMedCentralCrossRefGoogle Scholar
  42. Wiencek C, Coyne P. Palliative care delivery models. Semin Oncol Nurs. 2014;30(4):227–33.PubMedCrossRefGoogle Scholar
  43. World Health Organization. A glossary of terms for community health care and services for older persons. Geneva: World Health Organisation; 2004.Google Scholar
  44. World Health Organization. Global atlas of palliative care at the end of life. London: World Wide Palliative Care Alliance & World Health Organization; 2014.Google Scholar

Copyright information

© Springer Nature Switzerland AG 2019

Authors and Affiliations

  1. 1.School of Nursing and MidwiferyThe University of SheffieldSheffieldUK

Personalised recommendations