Family care and burden at the end of life

In 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 caregivers 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 caregiving 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 diagnosable depressive disorder at some point in their caregiving careers.^2,3,4,5,6,7 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 managing home oxygen) that were previously performed by health care personnel. Even in countries such as Sweden, that are generally known for providing services to people at home, families are being asked to provide more of the care.¹¹

In these circumstances, we need to consider family caregivers and be concerned about them for 2 reasons. First, family caregivers must be recognized as an essential part of the treatment team. By clearly recognizing this role, physicians and other health care providers encourage caregivers to be more confident about their abilities to care for their loved ones. Further, without their assistance, or with a faltering assistance, not only will the societal costs of chronic and terminal care be substantially greater, but the well-being and perhaps even the survival rates of patients will be much poorer. Second, physicians and other health care providers need to be alert to the heavy burden that such care places on caregivers. The burden of care should be assessed, stress levels and mental health monitored (especially for depressive symptoms) and appropriate steps taken to prevent caregivers from becoming overwhelmed.

These caregiver needs must be addressed in a sensitive way, with interventions that support caregivers emotionally and in the performance of their care activities. In a comprehensive review of caregiving for terminally ill patients, Haley¹² described several promising strategies for helping families. A fundamental step is providing families with the information they need to understand the patient's illness and manage the various tasks required of them. They may benefit from learning how to communicate better with the patient, as well as examining their own role, including the ups and downs they are facing and the possibility of finding rewards or satisfaction in what they are doing. Getting help with care tasks in the home may be useful in reducing their level of stress. Haley also pointed out that, although many people receive help with their grief after the patient's death, some caregivers are largely overlooked, such as those who cared for a relative in a nursing home.

These approaches are straightforward, but they depend on having a psychologist or other health care professional familiar with end-of-life care included as part of the treatment team. Although time and effort are required, these strategies may help caregivers provide the care they want to and provide better home care at a reduced risk to their own health. There may even be a potential for cost-savings: caregivers who are more knowledgeable and confident may place fewer demands on the physician and other health care providers.

β See related article page 1795