Core Modules

module 2 | Activity 15: Impact of caring

Caring for and communicating with people affected by life-limiting illness can be stressful.[1-4] Healthcare professionals are often confronted by human suffering, clinical deterioration, dying, death and family grieving.[1, 2, 5] This may force you to face your own mortality and previous personal experiences with death and loss. You may also confront grief and bereavement in a manner that you haven’t previously.[6] You can also find yourself confronting issues which are unique to palliative care and that are inherently hard to resolve including:[2-4, 6-9]

  • Your own concerns, beliefs, morality and ethical views about dying and death – which can also trigger a trauma response depending on your own personal experiences
  • Clinical anxieties, for instance if there is a perception that a diagnosis was missed or delayed
  • Traditional Western culture which views death as clinical failure
  • Difficulty in deciding how and when to shift from a curative to palliative approach
  • Feelings of reluctance to take on complex problems because of time constraints
  • Difficulty dealing with the clinical uncertainty that dying and death, and palliative care in general, create
  • Feelings of clinical helplessness if you are unable to completely relieve the distress and pain of a person affected by a life-limiting illness or if an outcome was unacceptable
  • Sustained and exclusive focus on life-limiting illnesses and end-of-life care
  • Caring for people with whom you identify with in some way – including being involved in caring for a dying friend, colleague or family member
  • Cultural anxiety caused by divergent cultural beliefs and experiences, both with self and the person affected by a life-limiting illness
  • Accumulated losses.

Accumulated stressors can have emotional and spiritual effects which can compromise personal wellbeing. Unexamined emotions can lead to burnout, moral distress and compassion fatigue.[3, 4, 10-12]

Burnout

Burnout is a syndrome of emotional exhaustion, depersonalisation and reduced accomplishment and occurs when stressors exceed the person’s ability to cope.[13]

Burnout is a significant cause of psychiatric morbidity and of loss of staff.[13, 14] Burnout indicators include:[13, 14]

  • Negative or cynical attitudes about people in your care and their needs
  • Negative attitudes to work, the workplace and/or colleagues
  • Pervasive feelings of dissatisfaction and unhappiness related to work
  • Physical and emotional symptoms (fatigue, boredom, irritability, headaches, weight loss etc.) which can be associated with absenteeism.
Moral distress

Moral distress describes the psychological, emotional and physiological suffering that healthcare professionals experience when they act in ways that are inconsistent with deeply held ethical values, cultural standpoints, principles or commitments.[15-17]

Moral distress is a predictable response to situations where a person recognises that there is a moral problem, believe that they have a responsibility to do something about it, but cannot act in a way that preserves their integrity or ethics.[16]

Circumstances which can cause moral distress include:

  • Witnessing unresolved pain and suffering[10]
  • Instances of futile treatment[18, 19]
  • Refusal of treatment that you believe is beneficial.[19]

Moral distress can result in serious adverse consequences, including:[16]

  • Aggression
  • Decreased job satisfaction
  • Leaving the healthcare sector.

Moral distress can lead to burnout.[10, 15]

Compassion fatigue

Compassion fatigue is a condition characterised by a gradual weakening of compassion over time.[20, 21]

Most people enter healthcare in order to help other people – especially people with critical physical, mental, emotional, and spiritual needs. The nature of continually showing compassion for people with a life-limiting illness, whose suffering is often continuous and unresolvable, can become exhausting – resulting in compassion fatigue.[22, 23] Compassion fatigue can also occur when, in the process of providing empathic support, you personally experience the pain of people in your care and their families.[24]

Compassion fatigue can lead to burnout.[10, 15]

Self-care resources

  • Professional Quality of Life Measure (ProQol 5): a widely used measurement tool that experienced health professionals use to regularly review the effects that a caring role has. The tool has subscales for compassion satisfaction, burnout and compassion fatigue. The tool is available from this site as well as additional information on this topic.
  • Wheel of wellbeing: describes the integration of six important dimensions of wellness – body, mind, spirit, people, place and planet, and outlines self-care strategies that align with these dimensions.
  • Self-Care Matters – Palliative Care: a resource from Palliative Care Australia which aims to support those working in any role in palliative care, to prevent burnout and build resilience.
  • Wellbeing resources: information and resources from the Black Dog Institute to support self-care strategies to enhance wellbeing.
  • Self-care room: a resource from the ELDAC project with specific self-care information for the aged care workforce.
  1. What signs would indicate that your colleagues are experiencing burnout or compassion fatigue?
  2. Access one of the self-care resources listed and consider the key areas where developing appropriate self-care strategies will be helpful for you.
  3. Reflecting on your own personal beliefs, can you anticipate circumstances which cause moral distress / compassion fatigue?
  4. For the healthcare professionals involved in Michelle’s care and support, what are some of the sources of potential:
    • Burnout
    • Moral distress
    • Compassion fatigue.
  1. Sarafis, P., et al., The impact of occupational stress on nurses’ caring behaviors and their health related quality of life. BMC nursing, 2016. 15: p. 56-56.
  2. Kamal, A.H., et al., Prevalence and Predictors of Burnout Among Hospice and Palliative Care Clinicians in the U.S. Journal of pain and symptom management, 2016. 51(4): p. 690-696.
  3. Hall, L.H., et al., Healthcare Staff Wellbeing, Burnout, and Patient Safety: A Systematic Review. PloS one, 2016. 11(7): p. e0159015-e0159015.
  4. Therapeutic Guidelines Ltd, Caring for dying patients: impact on healthcare providers. 2018: Melbourne.
  5. Peters, L., et al., Is work stress in palliative care nurses a cause for concern? A literature review. International Journal of Palliative Nursing, 2012. 18(11): p. 561-567.
  6. Sinclair, S., Impact of death and dying on the personal lives and practices of palliative and hospice care professionals. CMAJ : Canadian Medical Association journal = journal de l’Association medicale canadienne, 2011. 183(2): p. 180-187.
  7. Murray, S.A., et al., Palliative care from diagnosis to death. BMJ, 2017. 356.
  8. Peters, L., et al., How death anxiety impacts nurses’ caring for patients at the end of life: a review of literature. The open nursing journal, 2013. 7: p. 14-21.
  9. Ingebretsen, L.P. and M. Sagbakken, Hospice nurses’ emotional challenges in their encounters with the dying. International journal of qualitative studies on health and well-being, 2016. 11: p. 31170-31170.
  10. Sanchez-Reilly, S., et al., Caring for oneself to care for others: physicians and their self-care. J Support Oncol, 2013. 11(2): p. 75-81.
  11. CareSearch. Self-Care. 2017  June 06, 2017]; Available from: https://www.caresearch.com.au/caresearch/tabid/3462/Default.aspx.
  12. Rizo-Baeza, M., et al., Burnout syndrome in nurses working in palliative care units: An analysis of associated factors. J Nurs Manag, 2018. 26(1): p. 19-25.
  13. CareSearch. Burnout. Information for nurses 2017  16 November 2017]; Available from: https://www.caresearch.com.au/caresearch/tabid/2179/Default.aspx.
  14. Maslach, C. and M.P. Leiter, Understanding the burnout experience: recent research and its implications for psychiatry. World psychiatry : official journal of the World Psychiatric Association (WPA), 2016. 15(2): p. 103-111.
  15. McCarthy, J. and C. Gastmans, Moral distress: a review of the argument-based nursing ethics literature. Nurs Ethics, 2015. 22(1): p. 131-52.
  16. Campbell, S.M., C.M. Ulrich, and C. Grady, A Broader Understanding of Moral Distress. Am J Bioeth, 2016. 16(12): p. 2-9.
  17. Resnik, D.B., Moral Distress in Scientific Research. The American journal of bioethics : AJOB, 2016. 16(12): p. 13-15.
  18. Phelps, A.C., et al., Addressing Spirituality Within the Care of Patients at the End of Life: Perspectives of Patients With Advanced Cancer, Oncologists, and Oncology Nurses. Journal of Clinical Oncology, 2012. 30(20): p. 2538-2544.
  19. Wiener, L., et al., Cultural and religious considerations in pediatric palliative care. Palliative & Supportive Care, 2013. 11(1): p. 47-67.
  20. Gallagher, R., Compassion fatigue. Canadian Family Physician, 2013. 59(3): p. 265-268.
  21. Gallagher, O., et al., Nursing student experiences of death and dying during a palliative care clinical placement: Teaching and learning implications, in Transformative, innovative and engaging session at the 23rd Annual Teaching Learning Forum 2014: Perth.
  22. Cocker, F. and N. Joss, Compassion Fatigue among Healthcare, Emergency and Community Service Workers: A Systematic Review. International journal of environmental research and public health, 2016. 13(6): p. 618.
  23. Nolte, A.G.W., et al., Compassion fatigue in nurses: A metasynthesis. Journal of Clinical Nursing, 2017. 26(23-24): p. 4364-4378.
  24. Lombardo, B. and C. Eyre, Compassion fatigue: a nurse’s primer. Online J Issues Nurs, 2011. 16(1): p. 3.