The Patient Protection and Affordable Care Act (ACA) redressed some of the longstanding inequities in women's health care by requiring that certain preventive services such as mammography and screening for gestational diabetes be made available to all women, free of charge. But one of those services, contraception, generated unprecedented controversy: according to the Sunlight Foundation (http://bit.ly/ZhAW3o), 147,000 public comments have been logged on both sides of the debate over whether the government should mandate such coverage, especially of religious institutions that object on moral grounds. A proposed rule clarifying the criteria for religious exemption will be finalized by August.
Another new policy was announced earlier this year, to surprisingly little furor, affecting women at the end of their lives: long-term care insurance rates for single women will go up by as much as 40%, and in order to qualify for policies some women will have to undergo testing. The increase will keep such insurance out of reach for an untold number of women, wrote Jane Gross on the New York Times health blog in February (see http://nyti.ms/VEkbPA), but the industry defends this sex-based (or “gender-distinct”) pricing as a matter of practical necessity: women outlive men and are more often single at the end of their lives; they therefore consume a majority of long-term care services, both residential and in the community.
There will be no pat solution to either of these issues or to the larger concern of care access for women of any age. But as is often the case in health policy, nurses have an angle on these questions that few others have—yet their voices may not always be heard.
CONTRACEPTION: WHO'S LOOKING OUT FOR THE PATIENT?
The ACA allows religious institutions to opt out of covering contraceptives for their employees. But should Hobby Lobby, a for-profit retail company with $2 billion in annual revenues and 18,000 employees, be allowed to opt out? The owners say it should: in February they sought an exemption under the Religious Freedom Restoration Act, supported by nine Republican senators, claiming that emergency contraception violates their religious beliefs. By early April, 60 such lawsuits had been filed.
For Susan Kendig, an NP and the chairwoman of the policy committee of the National Association of Nurse Practitioners in Women's Health (NPWH), these legal and moral debates obscure important public health dimensions of the issue. She said in a recent interview that although the NPWH has made no public comment on the religious exemption, nurses should bear in mind that contraception isn't merely about birth control.
“It's also about population health,” she said. “Women who have access to controlling their fertility can control other issues as well,” with enormous health and cost benefits. For example, Kendig said, the use of contraception leads to decreases in premature birth and infant deaths, a lowered lifetime risk of ovarian and uterine cancers, and fewer missed days of work because of dysmenorrhea. She emphasized the importance of NPs in helping women to understand the risks and benefits and in choosing a method that's right for them.
“The issue really is looking at what is best for that individual patient. I can't make the decision for her. We need to talk about her needs and goals,” Kendig said, adding that such individualized care and the many clinical benefits of contraception are rarely acknowledged in policy discussions.
WHO ARE THE ADVOCATES FOR ELDERLY WOMEN?
Long-term care advocates encourage nurses to hold conversations about long-term care with their older patients in addition to the discussions they have on other difficult and complicated topics, such as advance directives and end-of-life treatment. Charlotte Eliopoulos, executive director of the American Association for Long Term Care Nursing, said that a renewed emphasis on consumer education regarding the costs of long-term care should be nursing's first step. (Only about 10% of Americans have a long-term care policy, whereas an older adult has a 40% chance of entering a nursing home, according to many estimates.)
Dementia provides a stark example. More than two-thirds of those with Alzheimer's disease are women, according to the Alzheimer's Association, and the costs of caring for them are exorbitant. In the April 4 issue of the New England Journal of Medicine, Hurd and colleagues estimated that paid and unpaid care provided to people with dementia in 2010 ranged between $42,000 and $56,000 per person per year (the higher number includes an estimate of wages lost to unpaid caregivers) with a nationwide total of $159 billion to $215 billion.
“Total patient care encompasses socioeconomic issues,” Eliopoulos said, “but nurses are not as comfortable and skilled in this area.” Nurses in administrative positions can “make the business case” for institutional decisions, but clinical staff in long-term care may not know how to fully explain what residents need in economic terms. Nor have nurses addressed, Eliopoulos said, Medicaid's chronic underfunding of long-term care (Medicaid is the largest payer of these services, covering many low-income nursing home residents at preset rates that frequently don't cover costs).
Elderly women can be vulnerable in several respects. Nearly three-quarters of women ages 75 and older are unmarried, according to AARP estimates, but only about 30% of men are. Whether widowed, divorced, or never married, single older women are more likely than married women to live in poverty. It's with this population that nursing innovations in long-term care are emerging. One in particular is called CAPABLE, which stands for Community Aging in Place, Advancing Better Living for Elders, a two-phase study, funded by both the National Institutes of Health and the Centers for Medicare and Medicaid Services, designed to examine interventions for helping low-income older adults to remain in their preferred place of living.
The study's principal investigator, Sarah Szanton, is an associate professor at the Johns Hopkins University School of Nursing and a member of the principal faculty at the university's Center for Innovative Care in Aging. She said that CAPABLE makes use of a nurse, an occupational therapist, and a handyman, who come together to provide what she called patient-directed care. The handyman doesn't modify the home environment but works instead on “filling in holes in people's floors, securing shaky banisters”—making low-cost repairs that can make a big difference in keeping a person with chronic illness at home.
But that's just one way in which Szanton hopes that CAPABLE will expand prevailing attitudes. “People think of long-term care as a nursing home, but more and more we'll see options in the community,” she said. “Nurses need to think more broadly of it as preventive and tertiary care.”
The current study is a 16-week intervention given at a cost of $3,500 to $4,000 per person—that's the cost of about two weeks of nursing home care, Szanton said—and based on preliminary data she anticipates seeing a significant reduction in hospital and nursing home admissions among the 500 participants, at a three-year net savings of $2 million. And she's pleased with the improvements in participants’ lives. “We tend to focus on blood pressure,” Szanton said, “but the more important questions are, ‘Can you stand long enough to cook?’ and ‘Can you get into the tub?’ They want to get down the stairs to get to church or wash their own hair.”
These findings are in line with what Eliopoulos says is crucial: nurses must become more involved in policymaking at all levels. She urges nurses to bear in mind that most of the nursing staff providing direct long-term care are women earning “very low salaries” who receive little preventive care and have a high rate of on-the-job injuries. By considering those workers’ needs, nurses can ensure that patients have healthy caregivers, she said—an important aspect of patient advocacy. “We allow decisions to be made that aren't in nursing's best interest. We've got to understand the language of the people who hold the purse strings. And we have the clout to talk about more than care quality. Let us remember who the backbone of care really is.”—Joy Jacobson