Advance Care Planning (ACP)
Caregiving can be challenging work whether for a formal (paid) caregiver such as a healthcare provider or an informal (unpaid) caregiver such as a family member. In a report published in 2015 by Health Services Research, the estimated cost of lost work time for informal caregivers for the elderly was $522 billion annually.
Caregiving can also have an enormous impact on the health and quality of life of both the patient and the caregiver. When compared to non-caregivers, informal caregivers may experience the same psychological, behavioral and physiologic effects of those with coronary heart disease and autoimmune disease. Caregiving has also been found to be an independent risk factor for mortality.
Formal caregivers are not immune to the deleterious health effects of prolonged caregiving. Compassion fatigue resulting from the cumulative losses of patients can contribute to an inability to provide compassionate care, decreased quality of patient care and decisions to leave the workplace.
In palliative care, the unit of care is considered to be the patient and family as defined by the patient. Maintaining awareness and managing the symptom burden of patients and the burden of caregiving for both informal caregivers such as family members and formal caregivers such as the healthcare providers on the team as well as ourselves is essential. There are many different validated tools available to measure caregiver burden such as the Zarit Burden Interview and the Caregiver Strain Index as well as guidelines for supporting caregivers. For further information about how to manage this very important area of care, consult evidence-based guidelines.
Clinical Practice Guidelines
- Guidelines for the psychosocial and bereavement support of family caregivers of palliative care patients
- Fast Facts
- National Comprehensive Cancer Network (requires free registration)
- Adelman, R. D., Tmanova, L. L., Delgado, D., Dion, S., & Lachs, M. S. (2014). Caregiver burden: A clinical review. Journal of the American Medical Association, 311(10): 1052-1059.
- Bevans, M. & Sternberg, E. M. (2012). Caregiving burden, stress, and health effects among family caregivers of adult cancer patients. Journal of the American Medical Association, 307(4):398-403. doi:10.1001/jama.2012.29
- Chari, A. V., Engberg, J., Ray, K. N. and Mehrotra, A. (2015), The Opportunity Costs of Informal Elder-Care in the United States: New Estimates from the American Time Use Survey. Health Services Research, 50: 871–882. doi: 10.1111/1475-6773.12238
- Chittenden, E.H. & Ritchie, C. S. (2011). Work-life balancing: Challenges and strategies. Journal of Palliative Medicine, 14(7): 870-874.
- Family Caregiver Alliance (2012). Selected Caregiver Assessment Measures: A Resource Inventory for Practitioners, 2nd ed.
- Houck, D. (2014). Helping nurses cope with grief and compassion fatigue: An education intervention. Clinical Journal of Oncology Nursing, 18(4): 454-458.
- O’Hara, R.E., Hull, J.G., Lyons, K. D., Bakitas, M., Hegel, M. T., Li, Z., & Ahles, T. A. (2010). Impact on caregiver burden of a patient-focused palliative care intervention for patients with advanced cancer. Palliative Support Care, 8(4); 395-404.