Family care and burden at the end of life.

I n their article on family burden and the care of breast cancer patients (see page 1795), Grunfeld and colleagues make a fundamental and important point: family members provide a considerable amount of the care for people with terminal illnesses and their own health may suffer as a consequence. 1 In their study of 89 care-givers of women with advanced breast cancer, caregivers were significantly more anxious than patients and were substantially more likely to be depressed. The caregivers reported a considerable increase in burden and depression by the time the patients reached the terminal stage of illness. Over three-quarters of those who were employed reported that they had to miss work because of their caregiv-ing responsibilities. Care at the end of life has been overlooked in the literature on family caregiving, perhaps because its duration is relatively brief compared with the assistance given to people with diseases such as Alzheimer's that can span a decade or more. In those long-term care conditions, caregiving has a dramatic impact on the health and well-being of family caregivers. Between 40% and 70% of caregivers have been found to have clinically significant levels of depressive symptoms, and as many as 50% may meet criteria for a di-agnosable depressive disorder at some point in their care-giving careers. 2–7 Caregivers have been found to have an elevated risk of death compared with age-and sex-matched control subjects who are not providing care. 8 The work done by Grunfeld and colleagues, along with other recent studies, 9,10 demonstrates that risks to health and well-being for caregivers assisting relatives at the end of life are similar to risks for caregivers in long-term care situations. These studies of the adverse effects of caregiving underscore the central role that families play in the care of people with a disease or disability. Although families have always cared for sick family members, both cultural and medical practice factors have made these responsibilities more difficult. Notable changes in family life such as increased participation in the work place and decreased family size mean that there are fewer family members available to provide care. Those who are available may very likely have to work outside the home. In the area of medical care, decreasing length of hospital stays and decreased coverage for home health services result in families having to take on new tasks (e.g., providing intravenous medications, taking care of bladder catheters and …