Evidence summary

Many people with palliative care needs experience unacceptably high levels of pain. There is evidence to suggest that pain in palliative care could be better treated with existing approaches but barriers exist in the provision of optimal pain management in palliative care. [1] Barriers to patients receiving effective pain management can generally be grouped into three categories – those stemming from health care professional’s attitudes and knowledge, those stemming from patients beliefs and knowledge and those stemming from the health care system. In the non-palliative general population barriers to optimal pain management have been well researched and there is a tendency for providers to under assess pain and under treat pain in certain groups, like older people or children. [2,3] These suboptimal practices occur across a variety of clinical settings, from community care to emergency departments to acute hospitals and in palliative care. [1,4] In palliative care a number of groups have been specifically identified as being at risk of under assessment and under treatment of pain. These include people living in residential care and patients with cognitive impairment, [5,6] patients in neonatal, paediatric and adult intensive care units, [7-9] and members of minority ethnic communities. [4,10,11]

Barriers for health care professionals in optimising pain management in palliative care include failing to undertake adequate pain assessment by either failing to recognise the presence of pain, [8,9,12] or by failing to use validated assessment tools for specific patient groups. [1,13] One systematic review found that when health care professionals had less experience their accuracy when using pain assessment tools was low. [13] Another factor in suboptimal pain management is health care provider bias, which may manifest as prejudice against a particular group or the use of stereotypes to categorise a particular patient, or particular illness as not having pain. [9,13,14] Certainly the most vulnerable groups, the very young and the very old, are at greater risk for under assessment due to the misplaced belief that these age groups do not experience pain. [15] A systematic review which studied a range of interventions to address these problems did not show consistent improvement in patients’ pain severity, although patient satisfaction increased. [16] Several studies suggest that education of professionals in the post-graduate setting has the potential to improve outcomes for patients. [17,18] Noted in a recent systematic review the implementation of pocket cards, with information about symptom management in palliative care, were effective in improving pain management approaches for both adult and paediatric generalists with no experience in palliative care. [18] While internet-based training has been found to be efficient, neither it nor simulation based training has evidence for producing change in health care professional behaviour, although this area shows promise. [18] Previous exposure to palliative care training did show some benefit as did post-graduate rotations in palliative care services. Use of a pain algorithm by health care professionals has been shown to improve pain outcomes. [19] Nurse-led interventions including pain assessment, interdisciplinary collaboration, and medicines management, as well as educational interventions including the use of protocols, can improve patients’ understanding of their condition and their pain control. [1,14,20,21]

Patient and family/carer related barriers to pain management are also important. [15,22-24] The biopsychosocial nature of pain means that an individual’s knowledge and personal beliefs of pain and its treatment may greatly influence how well their pain can be managed. [21] In the palliative care setting patient related issues which may interfere with optimal pain management could include difficulty in accepting their prognosis, [9,14] a lack of knowledge regarding the various treatments for pain [25] and a fear of those treatments and their adverse effects. [11,26,27] As palliative care is increasingly provided in the community, family caregivers also play an important part in pain assessment and pain management. Gaps in caregivers’ knowledge and education have been identified. [28,29] Common issues with family and caregivers are a lack of understanding about analgesics and poor communication with palliative care providers. [24] Interventions targeting patients and their family/carers have been reviewed and have mixed results. Two reviews noted that interventions improved knowledge but did not result in improvement to pain scores or quality of life. [21,30] Another study demonstrated improved knowledge around pain management and improved patient satisfaction. [25] 

Health system barriers to optimal pain management in palliative care include a lack of referral pathways and a lack of specialist services to refer to. [1] There are mixed results from the literature regarding the benefits of palliative care services on pain management. There was a strong correlation between positive pain management outcomes and referral to palliative care in HIV patients, [31] while there was limited correlation between the two in surgical patients. [32] A meta-analysis of 19 studies suggested that palliative care teams have a small but significant positive impact on patients’ pain, although the quality of the studies included was variable. [33] Improving referral pathways and referral triggers has proven to be beneficial in integrating palliative care services in intensive care units. [7] A systematic review of models of service delivery for cancer pain supports multidisciplinary pain consultation services, with referral via a clinical pathway. [34] The prevalence of uncontrolled pain is an important quality indicator for health services, and validated quality indicators are available. [35-39] The use of pain as a quality indicator is complex as multiple assessment tools are used within individual patient and disease groups and some patient cohorts are underrepresented. [40] 

Practice implications

  • Pain in palliative care patients should be actively identified, carefully assessed, and treated promptly. [1,41]
  • Health care professionals should receive training in pain management for the palliative care setting and this training may be best repeated in both undergraduate and post graduate training programs. [18]
  • Exposure to palliative care services through rotations are useful at improving generalists' knowledge and symptom management of patients. [18]
  • Pocket cards and algorithms may also be useful to train staff who do not usually work in palliative care. Evidence-based protocols and educational processes within institutions should be developed to improve the quality of care. [18,19]
  • A number of organisations have developed mobile apps to facilitate point of care decision making, such as palliAGED and palliMEDS.
  • Discussing the pain management plan with patients and their families/caregivers is an important process which can improve overall symptom management and quality of life. [30] Checking patients and family/caregiver understanding of analgesics and ensuring open communication between them and the palliative care team could also greatly improve outcomes. [24]
  • The best practice approach to pain management is proactive and multidisciplinary.  Referral to a palliative care service may be beneficial to the patient and the family and may improve pain management outcomes.

  1. Coyne P, Mulvenon C, Paice JA. American Society for Pain Management Nursing and Hospice and Palliative Nurses Association Position Statement: Pain Management at the End of Life. Pain Manag Nurs. 2018 Feb;19(1):3-7. doi: 10.1016/j.pmn.2017.10.019. Epub 2017 Dec 16.
  2. Kwon JH. Overcoming barriers in cancer pain management. J Clin Oncol. 2014 Jun 1;32(16):1727-33. doi: 10.1200/JCO.2013.52.4827. Epub 2014 May 5.
  3. Sabin CA, Harding R, Bagkeris E, Nkhoma K, Post FA, Sachikonye M, et al. Pain in people living with HIV and its association with health care resource use, well being and functional status. AIDS. 2018 Nov 28;32(18):2697-2706. doi: 10.1097/QAD.0000000000002021.
  4. Gardner DS, Doherty M, Bates G, Koplow A, Johnson S. Racial and Ethnic Disparities in Palliative Care: A Systematic Scoping Review. Families in Society. 2018 Dec;99(4):301-316. doi.org/10.1177/1044389418809083
  5. Greenwood N, Menzies-Gow E, Nilsson D, Aubrey D, Emery CL, Richardson A. Experiences of older people dying in nursing homes: a narrative systematic review of qualitative studies. BMJ Open. 2018 Jun 4;8(6):e021285. doi: 10.1136/bmjopen-2017-021285.
  6. Ellis-Smith C, Evans CJ, Bone AE, Henson LA, Dzingina M, Kane PM, et al. Measures to assess commonly experienced symptoms for people with dementia in long-term care settings: a systematic review. BMC Med. 2016 Feb 26;14:38. doi: 10.1186/s12916-016-0582-x.
  7. Nguyen LT, Cooperberg DB, Spear ML. Introduction of triggers for palliative care consultation improves utilization and satisfaction within a level four NICU. J Perinatol. 2018 May;38(5):574-579. doi: 10.1038/s41372-018-0067-1. Epub 2018 May 8.
  8. Beckstrand RL, Lamoreaux N, Luthy KE, Macintosh JL. Critical Care Nurses' Perceptions of End-of-Life Care Obstacles: Comparative 17-Year Data. Dimens Crit Care Nurs. 2017 Mar/Apr;36(2):94-105. doi: 10.1097/DCC.0000000000000234.
  9. Threapleton DE, Chung RY, Wong SYS, Wong ELY, Kiang N, Chau PYK, et al. Care toward the end of life in older populations and its implementation facilitators and barriers: A scoping review. J Am Med Dir Assoc. 2017 Dec 1;18(12):1000-1009.e4. doi: 10.1016/j.jamda.2017.04.010. Epub 2017 Jun 13.
  10. Shavers VL, Bakos A, Sheppard VB. Race, ethnicity, and pain among the U.S. adult population. J Health Care Poor Underserved. 2010 Feb;21(1):177-220.
  11. Xu X, Luckett T, Wang AY, Lovell M, Phillips JL. Cancer pain management needs and perspectives of patients from Chinese backgrounds: a systematic review of the Chinese and English literature. Palliat Support Care. 2018 Dec;16(6):785-799. doi: 10.1017/S1478951517001171. Epub 2018 Jan 17.
  12. Downing J, Jassal SS, Mathews L, Brits H, Friedrichsdorf SJ. Paediatric Pain Management in Palliative Care. Pain Manag. 2015;5(1):23-35. doi: 10.2217/pmt.14.45.
  13. Ruben MA, van Osch M, Blanch-Hartigan D. Healthcare providers' accuracy in assessing patients' pain: A systematic review. Patient Educ Couns. 2015 Oct;98(10):1197-206. doi: 10.1016/j.pec.2015.07.009. Epub 2015 Jul 21.
  14. Scheerens C, Deliens L, Van Belle S, Joos G, Pype P, Chambaere K. "A palliative end-stage COPD patient does not exist": a qualitative study of barriers to and facilitators for early integration of palliative home care for end-stage COPD. NPJ Prim Care Respir Med. 2018 Jun 20;28(1):23. doi: 10.1038/s41533-018-0091-9.
  15. Linton JM, Feudtner C. What accounts for differences or disparities in pediatric palliative and end-of-life care? A systematic review focusing on possible multilevel mechanisms. Pediatrics. 2008 Sep;122(3):574-82. doi: 10.1542/peds.2007-3042.
  16. Goldberg GR, Morrison RS. Pain management in hospitalised cancer patients: A systematic review. J Clin Oncol. 2007 May 1;25(13):1792-801.
  17. Irajpour A. Interprofessional education: a facilitator to enhance pain management? J Interprof Care. 2006 Dec;20(6):675-8.
  18. Turrillas P, Teixeira MJ, Maddocks M. A Systematic Review of Training in Symptom Management in Palliative Care Within Postgraduate Medical Curriculums. J Pain Symptom Manage. 2019 Jan;57(1):156-170.e4. doi: 10.1016/j.jpainsymman.2018.09.020. Epub 2018 Oct 2.
  19. Du Pen AR, Du Pen S, Hansberry J, Miller-Kraybill B, Millen J, Everly R, et al. An educational implementation of a cancer pain algorithm for ambulatory care. Pain Manag Nurs. 2000 Dec;1(4):116-28.
  20. Courtenay M, Carey N. The impact and effectiveness of nurse-led care in the management of acute and chronic pain: a review of the literature. J Clin Nurs. 2008 Aug;17(15):2001-13.
  21. Martinez KA, Aslakson RA, Wilson RF, Apostol CC, Fawole OA, Lau BD, et al. A systematic review of health care interventions for pain in patients with advanced cancer. Am J Hosp Palliat Care. 2014 Feb;31(1):79-86. doi: 10.1177/1049909113476129. Epub 2013 Feb 12.
  22. Jacobsen R, Moldrup C, Christrup L, Sjogren P. Patient-related barriers to cancer pain management: a systematic exploratory review. Scand J Caring Sci. 2009 Mar;23(1):190-208. Epub 2008 Sep 10.
  23. Flemming K. The use of morphine to treat cancer-related pain: a synthesis of quantitative and qualitative research. J Pain Symptom Manage. 2010 Jan;39(1):139-54. Epub 2009 Sep 24. 
  24. Chi NC, Demiris G. Family Caregivers' Pain Management in End-of-Life Care: A Systematic Review. Am J Hosp Palliat Care. 2017 Jun;34(5):470-485. doi: 10.1177/1049909116637359. Epub 2016 Mar 14.
  25. Cagle JG, Zimmerman S, Cohen LW, Porter LS, Hanson LC5, Reed D. EMPOWER: an intervention to address barriers to pain management in hospice. J Pain Symptom Manage. 2015 Jan;49(1):1-12. doi: 10.1016/j.jpainsymman.2014.05.007. Epub 2014 May 28.
  26. Bullock L, Bedson J, Jordan JL, Bartlam B, Chew-Graham CA, Campbell P. Pain assessment and pain treatment for community-dwelling people with dementia: A systematic review and narrative synthesis. Int J Geriatr Psychiatry. 2019 Jun;34(6):807-821. doi: 10.1002/gps.5078. Epub 2019 Apr 8.
  27. Davidson JGS, Guthrie DM. The Influence of Physical and Psychosocial Factors on Disruptive Pain Among Seriously Ill Home Care Patients. J Palliat Care. 2017 Apr;32(2):61-68. doi: 10.1177/0825859717724686. Epub 2017 Aug 28.
  28. Docherty A, Owens A, Asadi-Lari M, Petchey R, Williams J, Carter YH. Knowledge and information needs of informal caregivers in palliative care: a qualitative systematic review. Palliat Med. 2008 Mar;22(2):153-71.
  29. Meeker MA, Finnell D, Othman AK. Family caregivers and cancer pain management: a review. J Fam Nurs. 2011 Feb;17(1):29-60.
  30. Latter S, Hopkinson JB, Richardson A, Hughes JA, Lowson E, Edwards D. How can we help family carers manage pain medicines for patients with advanced cancer? A systematic review of intervention studies. BMJ Support Palliat Care. 2016 Sep;6(3):263-75. doi: 10.1136/bmjspcare-2015-000958. Epub 2016 May 5.
  31. Harding R, Karus D, Easterbrook P, Raveis VH, Higginson IJ, Marconi K. Does palliative care improve outcomes for patients with HIV/AIDS? A systematic review of the evidence. Sex Transm Infect. 2005 Feb;81(1):5-14.
  32. Lilley EJ, Khan KT, Johnston FM, Berlin A, Bader AM, Mosenthal AC, et al. Palliative Care Interventions for Surgical Patients: A Systematic Review. JAMA Surg. 2016 Feb;151(2):172-83. doi: 10.1001/jamasurg.2015.3625.
  33. Higginson IJ, Finlay IG, Goodwin DM, Hood K, Edwards AG, Cook A, et al. Is there evidence that palliative care teams alter end-of-life experiences of patients and their caregivers? J Pain Symptom Manage. 2003 Feb;25(2):150-68.
  34. Brink-Huis A, van Achterberg T, Schoonhoven L. Pain management: a review of organisation models with integrated processes for the management of pain in adult cancer patients. J Clin Nurs. 2008 Aug;17(15):1986-2000.
  35. Lorenz KA, Lynn J, Dy S, Wilkinson A, Mularski RA, Shugarman LR, et al. Quality measures for symptoms and advance care planning in cancer: a systematic review. J Clin Oncol. 2006 Oct 20;24(30):4933-8.
  36. Pasman HR, Brandt HE, Deliens L, Francke AL. Quality indicators for palliative care: a systematic review. J Pain Symptom Manage. 2009 Jul;38(1):145-56.
  37. Qaseem A, Snow V, Shekelle P, Casey DR Jr, Cross JT Jr, Owens DK, et al. Evidence-based interventions to improve the palliative care of pain, dyspnea, and depression at the end of life: a clinical practice guideline from the American College of Physicians. Ann Intern Med. 2008 Jan 15;148(2):141-6.
  38. Downing J, Namisango E, Harding R. Outcome measurement in paediatric palliative care: lessons from the past and future developments. Ann Palliat Med. 2018 Oct;7(Suppl 3):S151-S163. doi: 10.21037/apm.2018.04.02. Epub 2018 Jun 19.
  39. Higginson IJ, Simon ST, Benalia H, Downing J, Daveson BA, Harding R, et al. Republished: which questions of two commonly used multidimensional palliative care patient reported outcome measures are most useful? Results from the European and African PRISMA survey. Postgrad Med J. 2012 Aug;88(1042):451-7.
  40. Friedel M, Aujoulat I, Dubois AC, Degryse JM. Instruments to Measure Outcomes in Pediatric Palliative Care: A Systematic Review. Pediatrics. 2019 Jan;143(1). pii: e20182379. doi: 10.1542/peds.2018-2379. Epub 2018 Dec 7.
  41. Gordon DB, Dahl JL, Miaskowski C, McCarberg, B, Todd KH, Paice JA, et al. American Pain Society recommendations for improving the quality of acute cancer pain management: American Pain Society Quality of Care Task Force. Arch Intern Med. 2005 Jul 25;165(14):1574-80.

Last updated 27 August 2021