Even for patients receiving complex, intensive medical care for serious
and life-threatening illness, family caregiving is typically at the core of
what sustains patients at the end of life. The amorphous relationship between
physicians and the families of patients at the end of life presents both challenges
and opportunities for which physicians may be unprepared. Families play important
roles in the practical and emotional aspects of patient care and in decision
making at the end of life. At the same time, family members may carry significant
burdens as a result of their work. Through the perspectives of the wife, daughter,
and home care nurse of a patient who died from pancreatic cancer, we illustrate
the range of family caregiver experiences and suggest potentially helpful
physician interventions. We describe 5 burdens of family caregiving (time
and logistics, physical tasks, financial costs, emotional burdens and mental
health risks, and physical health risks) and review the responsibilities of
physicians to family caregivers. Based on available evidence, we identify
5 areas of opportunity for physicians to be of service to family members caring
for patients at the end of life, including promoting excellent communication
with family, encouraging appropriate advance care planning and decision making,
supporting home care, demonstrating empathy for family emotions and relationships,
and attending to family grief and bereavement. In caring well for family caregivers
at the end of life, physicians may not only improve the experiences of patients
and family but also find greater sustenance and meaning in their own work.
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