Understanding the Economic and Other Burdens of Terminal Illness for Patients and Their Caregivers FREE

Terminal illness creates many hardships for both patients and the people who care for them. However, the specific nature and causes of these burdens have not been well described.

The researchers wanted to try to understand more clearly what factors lie behind the financial and nonfinancial burdens of terminal illness.

Nine hundred eighty-eight patients who were judged by their physicians to be unlikely to live for more than 6 months, and 893 of these patients' caregivers. Relatives or friends who helped to care for patients daily (not health care professionals) were the kind of caregivers studied. Study participants were recruited from Worcester, Massachusetts; St Louis, Missouri; Tucson, Arizona; Birmingham, Alabama; Brooklyn, New York; and Mesa County, Colorado.

The researchers interviewed study participants in person about the types of care they needed, the financial and other hardships associated with caring for illness, caregiver depression, how much taking care of patients interfered with caregivers' usual activities, and patient consideration of voluntarily ending their lives.

Over a third of patients reported substantial care needs, such as transportation, homemaking (for example, cooking and housecleaning), personal care (for example, bathing and dressing), and nursing care (for example, administering medications). Poor physical ability, being older than 65 years of age, being incontinent of urine or stool, and having a low income were associated with the greatest care needs. Patients with substantial care needs were more likely to report financial burdens, such as having to spend at least 10% of household income on health care, having to take out loans, having caregivers who needed to work two jobs, or having to spend savings. Patients with substantial care needs were also more likely than those without such needs to consider voluntarily ending their lives. Caregivers of patients with substantial needs were more likely to be depressed and to report that caring for the patient interfered substantially with their own lives. Patients who reported having physicians who listened to the patient and caregiver reported fewer caregiver burdens.

This study included patients identified by their doctors and may therefore have selected patients with fewer care needs.

The needs for daily care are substantial and are important factors in the financial and other burdens experienced by terminally ill patients and their caregivers.