Exhausted, frustrated, and overwhelmed. These are some of the words used to describe burnout; a psychological condition caused by chronic stress. The responsibilities associated with providing end-of-life care to patients can be psychologically and physiologically demanding. Physiological symptoms of burnout can manifest as fatigue, trouble sleeping, elevated blood pressure or increased substance use1. In palliative care, patients may receive formal care from health care professionals or informal care from members of the patient’s family or chosen family. Often, patients receive a combination of informal and formal caregiving.
There are numerous factors that can negatively contribute to palliative caregiver burnout. Multiple studies have been completed to call attention to and better understand these factors to prevent and manage palliative caregiver burnout.
In palliative care, it is the role of healthcare providers to provide professional end-of-life care for patients. A systematic review2 analyzing the prevalence of burnout among palliative care healthcare professionals found that nurses had higher levels of emotional detachment alongside negative emotions about their workplace responsibilities. The study also found rates of burnout were highest among professionals providing home-based palliative care services.
Burnout can affect not only the caregiver but also the entire care team and patients. As a results of the potential consequences burnout can have on quality of care, research has been done to better understand the factors that influence burnout.
Factors that can contribute to burnout in palliative healthcare professionals include:
- Demanding and/or conflicting schedules1
- Lack of boundaries1
- Unmanageable or heavy workloads1
- Lack of coping skills to deal with patient suffering and death3
In Canada, it is estimated that there are around 8 million family caregivers (Carers Canada, n.d.) and the majority are females between 45 and 65 years old5. The role and responsibilities of a family caregiver is diverse. For example, individuals may be tasked with domestic chores, managing symptoms, organizing medical appointments, and providing both emotional support and physical care. Often, caregiver duties are completed in addition to an individual’s career or work obligations.
Providing end-of-life care to a family member can cause significant emotional and physical stress. Studies have shown that family caregivers report higher levels of anxiety and depression5. Levels of psychological distress increased as patient health status decreased5. Family caregivers also report experiencing social isolation. In addition to the responsibilities of caregiving, several socioeconomic factors such as social support networks, level of education, employment status, housing, geographic location, and age or stage of life6. Family caregivers also report physiological stress due to the round the clock demands required to provide palliative care7.
Strategies for organizations to prevent and mitigate burnout in palliative caregivers
For healthcare professionals:
- Training modules to identify the signs of stress
- Provide burnout interventions on-site, within the workplace9
- Focus on burnout prevention strategies rather than burnout treatment strategies9
- Education about coping and communication skills3
- Opportunities for breaks during working hours and vacation days
For family caregivers:
- Identify or develop local resources that serve the specific needs of family caregivers and make readily available3
- Educate family members on:
- Signs and symptoms of caregiver burnout
- Information about disease trajectory and care requirements9
- Encourage that family caregivers establish a support network
- Webster. (n.d). Caregivers in challenging times. Canadian Hospice Palliative Care Association. Retrieved from: https://www.chpca.ca/wp-content/uploads/2020/08/Caregivers20in20challenging20times20booklet.pdf
- Parola, V., Coelho, A., Cardoso, D., Sandgren, A., & Apóstolo, J. (2017). Prevalence of burnout in health professionals working in palliative care: a systematic review. JBI Evidence Synthesis, 15(7), 1905-1933. DOI: 10.11124/JBISRIR-2016-003309
- Ercolani, G., Varani, S., Peghetti, B., Franchini, L., Malerba, M. B., Messana, R., … & Pannuti, F. (2020). Burnout in home palliative care: what is the role of coping strategies?. Journal of palliative care, 35(1), 46-52. DOI: https://doi.org/10.1177/0825859719827591
- Carers Canada. (n.d). Caregiver Facts. Retrieved from: https://www.carerscanada.ca/caregiver-facts/
- Stajduhar, K. I. (2013). Burdens of family caregiving at the end of life. Clinical and Investigative Medicine, E121-E126. DOI: 10.25011/cim.v36i3.19722
- Giesbrecht, M., Wolse, F., Crooks, V. A., & Stajduhar, K. (2015). Identifying socio-environmental factors that facilitate resilience among Canadian palliative family caregivers: a qualitative case study. Palliative & supportive care, 13(3), 555-565. DOI: 10.1017/S1478951513001028
- Martins Pereira, S., Fonseca, A. M., & Sofia Carvalho, A. (2011). Burnout in palliative care: A systematic review. Nursing ethics, 18(3), 317-326. DOI: 10.1177/0969733011398092
- Back, A. L., Steinhauser, K. E., Kamal, A. H., & Jackson, V. A. (2016). Building resilience for palliative care clinicians: an approach to burnout prevention based on individual skills and workplace factors. Journal of pain and symptom management, 52(2), 284-291. DOI: 10.1016/j.jpainsymman.2016.02.002
- Brazil, K., Bedard, M., Willison, K., & Hode, M. (2003). Caregiving and its impact on families of the terminally ill. Aging & Mental Health, 7(5), 376-382. DOI: 10.1080/1360786031000150649