END-OF-LIFE CARE: Families, Especially Women, Carry Load
Patients with terminal illnesses other than cancer are more likely to receive end-of-life care from family members than from a hospice, and the bulk of that care is provided by women, according to a study published in today's New England Journal of Medicine. Conducted by NIH researchers, the study found that patients who suffered from illnesses such as heart and lung disease "needed more assistance with nursing, personal and household care and transportation than cancer patients, in part because people with cancer are more likely to have hospice care." Non-cancer patients were also more likely to have unmet needs -- of 988 patients interviewed, 29% of cancer patients reported having "substantial need" for daily assistance, compared to 41% for people with other terminal illnesses -- and to rely on paid caregivers more often. "If you are trying to improve health care in this country for dying patients and you look at these data, you will say that cancer care is not perfect but it is under control," said Dr. Ezekiel Emanuel, the study's lead author. "For people without cancer, we have a big problem." (Stolberg, New York Times, 9/23). Researchers speculate that one source of the discrepancy lies with physicians, who may be "more comfortable in considering patients with cancer as dying" and hence be more likely to arrange for hospice care (AP/Philadelphia Inquirer, 9/23).
The Female Burden
The study reported that in total, 96% of the primary caregivers for terminally ill patients were family members. In addition, 72% of caregivers were women, primarily wives or partners, daughters and sisters. But at the same time, women who themselves needed end-of-life care were much less likely to get it from family members and friends than men, with 78% of men receiving assistance from family or friends, compared to 64% of women. Instead, women relied on paid help, as 63% of women used paid caretakers, compared to 44% for men. Calling women "doubly affected" by the need for end-of-life care, researchers said, "Women are apparently called on to provide care to dying family members, but when they themselves are dying, they must rely to a significantly greater extent on paid help."
Helping Those Who Help Others
Faced with such data, the study's authors recommended that society "recognize and support the substantial amount of time family members devote to caring for terminally ill patients, whether through tax credits or by other means." Researchers also warned that increases in home health co-payments and Medicare cutbacks will "adversely affect" the 15% of terminally ill patients who use paid help to meet most of their needs, particularly since such patients are more likely to have low incomes. Noting that non-family caregivers provide care only rarely, the authors also suggested that "men and members of religious and other civic organizations have an opportunity to be more actively engaged in caring for terminally ill patients" (Emanuel et al., New England Journal of Medicine, 9/23 issue).
The Kansas City Star reports that one organization that is already taking steps in this direction: the Midwest Bioethics Center, which yesterday held a series of workshops for Kansas City-area clergy to "discuss how better to incorporate the needs of the dying into their ministries." The event, which included workshops on how to hold caring conversations with terminally ill patients and how to use religious rituals effectively in preparing patients for death, came in response to a recent survey by the Bioethics Center that found nearly two-thirds of area clergy felt they were doing an ineffective job in ministering to the dying. "We want to give (clergy) information, an opportunity to reflect on their responsibilities and duties. They honestly told us they did not have the education or the training" to care for the dying, said center President Myra Christopher (Bavley, 9/22).