Survey (2002)

Oncologists are doing a good job in some areas of caregiver support and education, but could do more to help those who provide informal, unpaid care for cancer patients. That is the conclusion of a new report from the Robert Wood Johnson Foundation and the Foundation for Accountability (see box on page 48). The new report notes that informal caregivers are usually spouses, partners, or family members. Previous studies have shown that these unpaid caregivers are the invisible underpinnings of the health care system, providing 80% of all home care services—often at high cost to their own physical and emotional health—according to the National Family Caregivers Association. In this survey of 1,005 unpaid adult caregivers of people with cancer and other chronic diseases—including dementia, frailty, arthritis, coronary artery disease, and depression, and the aftermath of traumatic injury or accident—64% of those caring for cancer patients felt they received the care guidelines they needed from doctors, while only 42% of those caring for demented or frail patients reported receiving needed physician guidance, for example. Caregivers for cancer patients also reported more involvement in decision-making (46%) than those caring for the demented or frail (37%). A total of 64% of caregivers of cancer patients said the patients' doctors were “helpful” or “very helpful” in increasing their understanding of managing illness, compared with just 41% of traumatic injury or accident patients and 42% of those caring for the demented or frail. The higher percentage for oncologists “may be because many oncology practices and medical centers offer cancer support services,” notes the report. But on the downside, fully 89% of caregivers of cancer patients—on a high par with caregivers of traumatic-injury patients—reported observing the care recipient in pain. And of these cancer caregivers, nearly a third (29%) felt the patient had to wait too long to get pain medication to lessen their suffering. 52 Million & Rising The report notes that an estimated 52 million Americans serve as informal caregivers, a number that is expected to escalate as the 76 million baby boomers age and the incidence of chronic disease rises. Overall, the health system too frequently drops the ball where these millions of caregivers are concerned, the survey shows. “Caregivers provide a vital service to loved ones at very high cost to themselves,” said David Lansky, PhD, President of the Foundation for Accountability. “Caregivers report more days of both poor physical and mental health per month than the general population and are on par with people suffering from a chronic illness. This suggests that caregiving extracts a heavy toll on overall health.” The results of the survey indicate that providers need to do a better job integrating caregivers into treatment plans and decisions, noted James R. Knickman, PhD, Robert Wood Johnson Vice President for Research and Evaluation. Social Isolation Social isolation is a particular hazard of caregiving. A total of 55% of caregivers in the survey said they feel isolated. Fully 50% feel the burden of caregiving is “frequently” or “sometimes” too much to handle. Depression is also high among caregivers. About one in five (22%) has been diagnosed in the last year with depression—a figure that is almost twice the rate in the general population. Specifically, nearly half (43%) of caregivers of cancer patients report experiencing emotional stress, while 22% of caregivers of cancer patients report feeling physical strain. Some 27% of caregivers of cancer patients report financial hardship caused by the patient's illness, which creates added worry.Figure: The different categories of informal caregivers are defined in the report as shown.Many caregivers are under double stress because they are balancing the demands of a job with the demands of providing care: More than half of those in the survey were working full- or part-time. Most caregivers in the survey (68%) are women, but that means that there was still a significant minority (32%) of men filling this role. Caregivers of both sexes are primarily middle-aged: Nearly half of respondents fell into the age group 45–64. 4 or More ADLs & IADLs The survey found that caregivers provide a great deal of emotional support to patients, as well as help with both activities of daily living (ADLs) and instrumental activities of daily living (IADLs). Most caregivers (63%) help patient with four or more ADLs or IADLs, which may include bathing, dressing, toileting, transferring, eating, transportation, cooking, and housework. Some 18% of caregivers reported providing care for incontinence, while 38% reported that they helped the patient to walk. Negotiating the medical system on behalf of the patient takes a great deal of a caregiver's physical and psychic energy, according to the survey. Fully 56% of caregivers of cancer patients reported spending a great deal of time and effort trying to make sure the patient's medical needs were being met by physicians or other health providers. More than half (52%) of caregivers of cancer patients felt the medical system should do more to make the ill patient comfortable. Most Needed: Respite Care The survey shows that what many caregivers need most is respite care: a temporary break from the constancy of their caregiving duties, offered in the home or through adult day care. Twenty-two percent of caregivers of cancer patients said they needed and received respite care, but a nearly equal number—20%—said they needed respite care and did not receive it. The survey found that many conscientious caregivers need to be helped to share their guilt about accepting respite services; despite their high stress levels, a clear majority (57%) of caregivers of cancer patients said they did not need respite care. Since respite care is usually not reimbursed by Medicare, Medicaid, or private insurance, the report notes, caregivers of patients with the highest incomes are the most likely to use respite services. Fully 34% of caregivers of patients with incomes of $75,000 a year or higher said they used respite services, compared with 21% of those with incomes of $15,000 or less. Especially troubling is the survey's overall finding that only 49% of patients receiving care from informal caregivers have signed a durable power of attorney; only 45% have signed a living will; and only 47% of patients or their caregivers have talked to their doctors about the patient's treatment preferences as illness progresses. Such uncertainties leave the caregiver as well as the patient unprepared to cope with critical decisions about the future. FACCT Facts The Foundation for Accountability (FACCT.org) is a not-for-profit organization created in 1995 that states its mission as helping Americans make better health care decisions. It receives funding from the following organizations: Amgen, the California HealthCare Foundation, the Commonwealth Fund, the David and Lucile Packard Foundation, the Eli Lilly Foundation, the Markle Foundation, Merck & Co., Inc., Pfizer Inc., and the Robert Wood Johnson Foundation. Conclusions The new report draws the following overall conclusions about caregivers, which are consistent with those cited by the National Family Caregivers Association: Caregivers are a population at risk; many caregivers are depressed and feel isolated and burdened. Their physical and mental health is worse than that in the general adult population. If they burn out, both their patient and society suffers. Caregiving is a time-consuming, long-term commitment, and often requires juggling multiple responsibilities—family and work—while providing care to the ill person.FigureCaregivers need help, but support services for them are neither consistent, organized, accessible, nor affordable. Many physicians and other health care providers do not adequately recognize the role of caregivers or include them in health care decisions abut the medical management of the care recipient. Caregivers feel helpless, as they believe more could be done. Caregivers lack the tools—living wills or advanced directives—that would make significant care decisions easier.