Interventions to facilitate family caregiving at the end of life

Abstract

Informal family caregivers provide care in a variety of situations, including care for patients receiving active curative treatment for cancer and other life-threatening diseases, for Alzheimer's patients over the long trajectory of their disease, and for hospice patients who are near the end of life. Especially at the end of life, these caregivers are essential because they provide needed help with activities of daily living, medications, eating, transportation, and emotional support, as well as communicating with health care professionals about the patients' condition. As health care increasingly moves out of acute care settings and into homes, the role of the caregiver becomes more critical and the burden becomes heavier. There is a paucity of data regarding which caregivers are at greatest risk for distress and which interventions are likely to relieve that distress. Although both educational and supportive interventions have been tested, including both telephone and face-to-face meetings, it still is not clear which approach is best for which groups of caregivers. Much of the research that has been done has been descriptive and evaluative, and only a very limited number of clinical trials have been conducted with caregivers of patients near the end of life. There is limited evidence about whether caregiver interventions at the end of the patient's life have the potential to provide long-term benefits to caregivers. In addition, issues exist in adapting such interventions to work with culturally diverse populations. Sadly, there appears to be a limited number of investigators doing this important work. More research is needed to provide complete evidence on which to base practice and policy decisions.