The Caregiver's Perspective: Across the Illness Trajectory
Generally speaking, factors that may predict a caregiver's poor adjustment over the long term include the following:
- Strain in the relationship between caregiver and patient.[18,19]
- Negative communication patterns between caregiver and patient.
- Less social support.
- Role overload.
End of Life
Caregiver quality of life has been found to be influenced by the cancer patient's stage of illness and goals of care. Caregivers of patients at the end of life have been shown to have significantly lower quality-of-life scores and health scores than do caregivers of patients who are in active/curative treatment.[23,24]
The physical and emotional demands of caregiving reach their peak as the disease progresses to the terminal phase. The period during which patients enter hospice is often characterized by profound unrest and intense strain. In the context of recurrent illness, terminal illness, or the dying process, the caregiver must meet a new set of challenges in dealing with increasing functional limitations, increasing dependence of the patient, and greater symptom burden.[25,26] If treatment is prolonged, the capacity of caregivers to meet the daily needs of patients is severely strained.
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.