The Caregiver's Perspective: Across the Illness Trajectory
Caregivers providing end-of-life care have been shown to experience increased emotional distress, regardless of the amount of care provided, when they are limited in their ability to participate in valued activities and interests. Research had suggested that caregivers of cancer patients were at risk of developing a variety of psychological and physical problems, including anxiety, depression, fatigue, reduced self-esteem, and somatic health problems.[27,28] However, the landscape has changed since the development of hospice and palliative medicine as a medical specialty, the availability of specialist-level palliative care consultation teams, and the equal focus on the cancer patient and family caregiver as the unit of care.
Hospital palliative care programs have been shown to improve caregiver well-being, family satisfaction, and physical and psychological symptom management for patients and caregivers alike. In a retrospective study involving 524 caregivers, palliative care consultation was associated with higher scores in nine caregiver-related domains of care during the last month of life. These differences were attributable primarily to improvements in communication and emotional support.
Generally speaking, the hallmarks of palliative care that relate to caregivers include the following:
- An interdisciplinary focus.
- Concern for quality of life of both patients and family caregivers.
- Involvement of caregivers in symptom management, communication, and medical decision making.
While the oncologist and other team members cannot be expected to address the symptoms of psychological distress in family caregivers, it is nonetheless helpful to recognize and identify such symptoms so that caregivers can be referred to any services they may need.
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