February 10, 2000 -- A study of the caregiving needs of terminally ill patients found women provide almost three-quarters of all care required by dying patients, such as help with transportation, homemaking, nursing, and personal care. Yet women who are themselves terminally ill are less likely than men to receive care from family members, and more likely to rely on paid assistance, according to the study.

These and other findings on patterns of caregiving have disturbing implications for society at a time when restrictions have been placed on home health care and other forms of paid assistance in an effort to lower costs and reduce fraud and abuse, said Ezekiel Emanuel, MD, PhD, chairman of the department of bioethics at the National Institutes of Health (NIH) and lead author of the study published in the New England Journal of Medicine (Vol. 341, No. 13).

"If we don?t provide paid care, where will patients go?" he asked.

Dr. Emanuel is co-director of the Commonwealth-Cummings Project on the End of Life, a privately-funded study that is exploring eight issues, including managed care and dying patients, pain management, and spirituality. For the series of reports in the End of Life Study, Dr. Emanuel and his colleagues interviewed 988 patients and 893 primary caregivers in six randomly selected areas across the US.

They found 96 percent of primary caregivers are family members ? usually wives, daughters, and sisters. Less than 20 percent of the terminally ill patients interviewed for this study and several related projects received paid caregiving along with assistance from family members, and more than 15 percent relied solely on paid caregivers. These patients were primarily unmarried, poor, and elderly.

The magnitude of family caregiving was not fully appreciated before this research was completed, according to Dr. Emanuel. The study suggests the family caregivers should get more recognition for the vital services they provide, perhaps in the form of tax credits.

If family caregiving is not an option and paid caregivers are not readily available, terminally ill patients will have to be hospitalized, which is likely to be the most costly option, Dr. Emanuel added. Insurers and policy makers should consider this when making decisions about health care services and reimbursement, he said.

The study also suggested more efforts should be made to recruit and train volunteers to help care for dying patients. Less than 3 percent of the study participants reported getting any volunteer assistance.

In addition, the research revealed cancer patients have fewer unmet caregiving needs than patients with other conditions, such as heart disease or chronic obstructive pulmonary disease. This may be because it is easier for physicians to identify a point in cancer care where there are no further treatment options, thus triggering more extensive use of family or paid caregivers, hospice care, and other services, Dr. Emanuel said.