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“Who Cares for the Caregiver?”: Professional Quality of Life in Palliative Care

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Abstract

An integrated approach to Hospice, Palliative, and End-of-Life (HP/EOL) care requires nurses and other formal caregivers to advocate for their patients who are facing life-limiting illness. Although palliative care professionals view their ability to work in these areas as a privilege, they are also dealing with considerable disparities between the growing demand for a palliative approach to care, and the capacity of various care settings to fully implement this approach. There are concerns regarding the cumulative emotional and/or mental toll experienced by nurses and other formal caregivers who are contending with perceived gaps in care and inadequate pain and symptom management. The following chapter focuses on the potential factors influencing the professional quality of life of nurses and other formal caregivers who provide HP/EOL care, with a summary of personal and organizational strategies intended to improve self-care and encourage the development of supportive work environments that foster provider wellness.

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References

  1. Canadian Hospice Palliative Care Association (CHPCA). The Way Forward National Framework: a roadmap for an integrated palliative approach to care, The Way Forward Initiative. 2015.

    Google Scholar 

  2. World Health Organization (WHO). Palliative Care. 2019. https://www.who.int/cancer/palliative/definition/en/.

  3. Canadian Hospice Palliative Care Association (CHPCA). A model to guide hospice palliative care. Ottawa, ON: Canadian Hospice Palliative Care Association; 2013.

    Google Scholar 

  4. Penz K, Duggleby W. Harmonizing hope: a grounded theory study of the experience of hope of registered nurses who provide palliative care in community settings. Palliat Support Care. 2011;9(3):281–94. https://doi.org/10.1017/S147895151100023X.

    Article  PubMed  Google Scholar 

  5. Penz K, Duggleby W. It’s different in the home... the contextual challenges and rewards of providing palliative nursing care in community settings. J Hosp Palliat Nurs. 2012;14(5):365–73.

    Article  Google Scholar 

  6. Cottrell L, Duggleby W. The good death: an integrative literature review. Palliat Support Care. 2016;14:686–712. https://doi.org/10.1017/S1478951515001285.

    Article  PubMed  Google Scholar 

  7. Goleman D. Emotional intelligence: why it can matter more than IQ. London: Bloomsbury Publishing Plc; 1996.

    Google Scholar 

  8. Dragan V, Smith CM, Tepper J. Burnout in healthcare: what are we doing about it? [cited 2019 Feb 14]. https://healthydebate.ca/2018/09/topic/burnout-in-health-care.

  9. Remen RN. Kitchen table wisdom stories that heal. New York, NY: Riverhead Books; 2006.

    Google Scholar 

  10. Abendroth M, Flannery J. Predicting the risk of compassion fatigue: a study of hospice nurses. J Hosp Palliat Nurs. 2006;8(6):346–56. https://doi.org/10.1097/00129191-200611000-00007.

    Article  Google Scholar 

  11. Melvin CS. Historical review in understanding burnout, professional compassion fatigue, and secondary traumatic stress disorder from a hospice and palliative nursing perspective. J Hosp Palliat Nurs. 2015;17:66–72.

    Google Scholar 

  12. Martins Pereira S, Fonseca AM, Sofia Carvalho A. Burnout in palliative care: a systematic review. Nurs Ethics. 2011;18:317–26.

    Article  Google Scholar 

  13. Maslach C, Leiter MP. Understanding the burnout experience: recent research and its implications for psychiatry. World Psychiatry. 2016;15(2):103–11. https://doi.org/10.1002/wps.20311.

    Article  PubMed  PubMed Central  Google Scholar 

  14. Rizo-Baeza M, Mendiola-Infante SV, Sepehri A, Palazon-Bru A, Gil-Guillen VF, Cortes-Castell E. Burnout syndrome in nurses working in palliative care units: an analysis of associated factors. J Nurs Manag. 2018;2018:19–25. https://doi.org/10.1111/jonm.1250.

    Article  Google Scholar 

  15. Figley CR. Compassion fatigue: toward a new understanding of the costs of caring. In: Stamm BH, editor. Secondary traumatic stress: self-care issues for clinicians, researchers, and educators. Baltimore, MD: The Sidran Press; 1995. p. 3–28.

    Google Scholar 

  16. Mathieu F. Running on empty: compassion fatigue in health professionals. Rehab & Community Care Medicine. 2007. http://www.compassionfatigue.org/pages/RunningOnEmpty.pdf

  17. Canadian Institute for Health Information (CIHI). Health care use at the end-of-life in Western Canada. Ottawa: CIHI; 2007.

    Google Scholar 

  18. Demerouti E, Bakker AB, Nachreiner F, Schaufeli WB. The job demands-resources model of burnout. J Appl Psychol. 2001;86:499–512. https://doi.org/10.1037/0021-9010.86.3.499.

    Article  CAS  PubMed  Google Scholar 

  19. Schaufeli WB, Bakker AB. Job demands, job resources and their relationship with burnout and engagement: a multi-sample study. J Organ Behav. 2004;25(3):293–315. https://doi.org/10.1002/job.248.

    Article  Google Scholar 

  20. Brazil K, Kassalainen S, Ploeg J, et al. Moral distress experienced by health care professionals who provide home-based palliative care. Soc Sci Med. 2011;71:1687–91.

    Article  Google Scholar 

  21. Thacker KS. Nurses’ advocacy behaviors in end-of-life nursing care. Nurs Ethics. 2008;15:174–85.

    Article  PubMed  Google Scholar 

  22. Melo CG, Oliver D. Can addressing death anxiety reduce health care workers’ burnout and improve patient care? J Palliat Care. 2011;27:287–95.

    Article  PubMed  Google Scholar 

  23. Fillion L, Dupuis R, Tremblay I, et al. Enhancing meaning in palliative care practice: a meaning-centered intervention to promote job satisfaction. Palliat Support Care. 2006;4:333–44.

    Article  PubMed  Google Scholar 

  24. Vachon MLS, Sherwood C. Staff stress and burnout. In: Berger AM, Shuster JL, JHV R, editors. Principles and practice of palliative care and supportive oncology. Philadelphia, PA: Lippincott Williams & Wilkins; 2007. p. 667–83.

    Google Scholar 

  25. Estabrooks CA, Hoben M, Poss JW, Chamberlain SA, Thompson GN, Silvius JL, et al. Dying in a nursing home: treatable symptom burden and its link to modifiable features of work context. J Am Med Dir Assoc. 2015;16(6):515–20. https://doi.org/10.1016/j.jamda.2015.02.007.

    Article  PubMed  Google Scholar 

  26. Huskamp HA, Kaufmann C, Stevenson DG. The intersection of long-term care and end-of-life care. Med Care Res Rev. 2012;69(1):3–44.

    Article  PubMed  Google Scholar 

  27. Government of Canada. An act to amend the criminal code and make related amendments to other acts (medical assistance in dying). 2016. https://laws-lois.justice.gc.ca/PDF/2016_3.pdf.

  28. Beuthin R, Bruce A, Scaia M. Medical assistance in dying (MAiD): Canadian nurses’ experiences. Nurs Forum. 2018;2018(53):511–20. https://doi.org/10.1111/nuf.12280.

    Article  Google Scholar 

  29. Lamb C, Evans M, Babenko-Mould Y, Wong A, Kirkwood K. Nurses’ use of conscientious objection and the implications for conscience. J Adv Nurs. 2018;2018:1–9. https://doi.org/10.1111/jan.13869.

    Article  Google Scholar 

  30. Pierce B, Dougherty E, Panzarella T, et al. Staff stress, work satisfaction, and death attitudes on an oncology palliative care unit, and on a medical and radiation oncology inpatient unit. J Palliat Care. 2007;23:32–9.

    Article  PubMed  Google Scholar 

  31. Slater PJ, Edwards S. Needs analysis and development of a staff well-being program in pediatric oncology, hematology, and palliative care services group. J Healthc Leaders. 2018;10:55–65.

    Article  Google Scholar 

  32. Penz K. What are the potential factors that sustain registered nurses who provide home-based palliative and end-of-life care? J Hosp Palliat Nurs. 2008;10(5):295–303.

    Article  Google Scholar 

  33. Mathieu F. The compassion fatigue workbook: creative tools for transforming compassion fatigue and vicarious traumatization. New York: Taylor and Francis Group; 2012.

    Google Scholar 

  34. Peters E. Compassion fatigue in nursing: a concept analysis. Nurs Forum. 2018;53(4):466–80. https://doi.org/10.1111/nuf.12274.

    Article  PubMed  Google Scholar 

  35. Coetzee S, Klopper H. Compassion fatigue within nursing practice: a concept analysis. Nurs Health Sci. 2010;12:235–43. https://doi.org/10.1111/j.1442-2018.2010.00526.x.

    Article  PubMed  Google Scholar 

  36. Sheppard K. Compassion fatigue: are you at risk? Am Nurs Today. 2016;11:53–5. https://www.americannursetoday.com. Accessed 23 Sept 2016

    Google Scholar 

  37. Harris C, Griffin TQ. Nursing on empty: compassion fatigue signs, symptoms, and system interventions. J Christ Nurs. 2015;32:80–7. https://doi.org/10.1097/CNJ.0000000000000155.

    Article  PubMed  Google Scholar 

  38. Nolte AG, Downing C, Temane A, Hastings-Tolsma M. Compassion fatigue in nurses: a meta-synthesis. J Clin Nurs. 2017;26:4364–78. https://doi.org/10.1111/jocn.13766.

    Article  PubMed  Google Scholar 

  39. Perry B, Toffner G, Merrick T, Dalton J. An exploration of the experience of compassion fatigue in clinical oncology nurses. Can Oncol Nurs J. 2011;21:91–105. https://doi.org/10.5737/1181912x2129197.

    Article  PubMed  Google Scholar 

  40. Tomic M, Tomic E. Existential fulfilment, workload and work engagement among nurses. J Res Nurs. 2010;16(5):468–79. https://doi.org/10.1177/1744987110383353.

    Article  Google Scholar 

  41. Perlo J, Balik B, Swensen S, Kabcenell A, Landsman J, Feeley D. IHI framework for improving joy in work, IHI white paper. Cambridge, MA: Institute for Healthcare Improvement; 2017.

    Google Scholar 

  42. Ablett JR, Jones RSP. Resilience and well-being in palliative care staff: a qualitative study of hospice nurses’ experience of work. Psycho-Oncology. 2007;16:733–40.

    Article  PubMed  Google Scholar 

  43. Yilmaz G, Ustun B. Professional quality of life in nurses: compassion satisfaction and compassion fatigue. J Psychiatr Nurs. 2018;9(3):205–11. https://doi.org/10.14744/php.2018.86648.

    Article  Google Scholar 

  44. Sacco TL, Copel LC. Compassion satisfaction: a concept analysis in nursing. Nurs Forum. 2018;53(1):76–83.

    Article  PubMed  Google Scholar 

  45. Sanso N, Galiana L, Oliver G, Pascual A, Sinclair S, Benito E. Palliative care professionals’ inner life: exploring the relationships among awareness, self-care, and compassion satisfaction and fatigue, burnout, and coping with death. J Pain Symptom Manag. 2015;50(2):200–7. https://doi.org/10.1016/j.jpainsymman.2015.02.013.

    Article  Google Scholar 

  46. Brighton LJ, Selman LE, Bristowe K, Edwards B, Koffman J, Evans CJ. Emotional labour in palliative and end-of-life communication: a qualitative study with generalist palliative care workers. Patient Educ Couns. 2018:1–9. https://doi.org/10.1016/j.pec.2018.10.013.

    Article  PubMed  Google Scholar 

  47. Tend Academy. What is compassion fatigue? 2019 [cited 2019 Feb 14]. https://www.tendacademy.ca/wp-content/uploads/2018/05/what-is-compassion-fatigue-2018-05-20.pdf.

  48. Penz K. Sidebar 2.1. Use of Canadian palliative care nurses’ reflective journaling as contributing to nurses’ health and wellbeing. In: Lindquist R, Snyder M, Tracy MF, editors. Complementary & alternative therapies in nursing. 7th ed. New York, NY: Springer Publishing Company; 2014. p. 21–2.

    Google Scholar 

  49. Rourke MT. Compassion fatigue in pediatric palliative care providers. Pediatr Clin N Am. 2007;54(2007):631–44. https://doi.org/10.1016/j.pcl.2007.01.004.

    Article  Google Scholar 

  50. Kim S, Wendy M, Peer Leadership Group, Mental Health Commission of Canada. Guidelines for the practice and training of peer support. Calgary, AB: Mental Health Commission of Canada; 2013. http://www.mentalhealthcommission.ca

    Google Scholar 

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Penz, K., Tipper, L. (2019). “Who Cares for the Caregiver?”: Professional Quality of Life in Palliative Care. In: Holtslander, L., Peacock, S., Bally, J. (eds) Hospice Palliative Home Care and Bereavement Support. Springer, Cham. https://doi.org/10.1007/978-3-030-19535-9_1

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  • DOI: https://doi.org/10.1007/978-3-030-19535-9_1

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