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5. The Burden of Caregiving at the End of Life - David A. Fleming
- University of Missouri Press
- Chapter
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58 5 The Burden of Caregiving at the End of Life David A. Fleming Patients with terminal illnesses typically require the assistance of family members, significant others, and friends to avoid hospitalization and be allowed to die at home. Nonprofessional caregivers are of central importance in end-of-life care because of the ongoing, day-to-day, often minute-to-minute care and support that is needed. They provide essential care and function as liaisons to physicians and other health professionals when patients need assistance with decision making and health-care planning. These services are not risk free for the caregiver. Assuming the responsibility of caring for loved ones at the end of life is frequently very distressing. Caregivers are at greater risk for depression, deteriorating physical health, financial difficulties, and premature death.1 Caregivers are also less likely to engage in preventive health behaviors or otherwise attend to their own health needs, placing them at risk for deterioration of existing chronic health problems.2 Caregivers add a critical dimension to care that deserves recognition and validation. Physicians and others caring for patients with terminal illness often overlook the needs of caregivers and may fail to recognize their importance. The patient, family, and caregiver coalesce into a single “unit of care” that serves to reformulate and enhance the relationship grounded in trust that forms between patients and physicians. Mutual trust and understanding between patients and their physicians are critical elements for suc- 59 The Burden of Caregiving at the End of Life cessful end-of-life care, and the caregiver becomes an equal stakeholder in this trust relationship. In this chapter I will underscore the importance of caregiving as a valuable part of end-of-life care and emphasize the critical importance of physicians’ and other team members ’ being sensitive and responsive to caregiver needs. I will also review recent research that has identified factors and physician behaviors most important to caregivers during the final months of patients’ lives and into bereavement. Early recognition of these factors may enable interventions that will be beneficial to the caregivers as well as their patients. The Importance of Caregiving In the United States cancer is the most frequent terminal illness requiring caregiving.3 In the early 1990s it was estimated that six million people in this country had a history of cancer, and three million had had the diagnosis for over five years.4 More than half a million people die of cancer here each year. This number will rise because cancer rates increase with age and the population is aging.5 Many cancer patients are now being cared for at home. As the population ages and health-care systems move toward earlier discharge from hospitals, the care of more cancer patients is shifting to home and other outpatient settings. Family caregivers for terminally ill patients are also necessary because of limited support and coverage by insurers for hospice and other home health-care services. In addition to rising cancer rates, the aging of our population also is creating a greater need for home caregivers. In the United States, overall life expectancy increased from 70.8 years in 1970 to 75.8 years in 1995.6 One implication of this phenomenon is that within fifty years, the number of cancer diagnoses is expected to double.7 Other forms of terminal illness will also be increasingly prevalent due to an aging population . Approximately 360,000 new cases of Alzheimer’s [18.212.102.174] Project MUSE (2024-03-28 20:26 GMT) 60 Care of the Dying Patient disease are being diagnosed annually, and the prevalence doubles every five years beyond the age of sixty-five.8 A study of Midwest caregivers revealed that most live with their patients, and most live in rural areas or smaller communities; only one-third live in urban populations of 50,000 or more.9 Awareness of this is important for health agencies in rural areas, where resources may be strained to support the increasing needs of terminal patients, caregivers , and physicians. The Risks and Economic Impact of Caregiving Most caregivers are older spouses or middle-aged adult children of severely disabled patients, and the majority of caregivers are women. Spouses have an increased mortality rate during the first year following the death of their mates,10 and this risk is further elevated when the spouse has served as the primary caregiver during the end-of-life period. The loss of a loved one, chronic emotional distress, the...