Keynoter Emily Friedman
The locus of care for chronically ill patients is moving to home and communitybased services-but this shift will place more responsibility on family caregivers.
Most elders are covered by Medicare or Medicaid-but many of their caregivers are uninsured or underinsured.
States are creating plans to extend kealthcare coverage to more people-but none of these measures cover long-term care.
These good news-bad news bulletins are some of the wide-ranging insights veteran health-policy analyst Emily Friedman offered in her keynote address, "Forces Reshaping 2ist Century Healthcare," which opened a special program on family caregiving held as part of the 2007 Joint Conference of the American Society on Aging (ASA) and National Council on Aging in Chicago in March. The special program was sponsored by the National Center on Caregiving and Family Caregiver Alliance in partnership with AS A.
Named one of the top 25 women in healthcare by Modern Healthcare magazine in 2005, Friedman is a contributing editor to Hospitals and Health Networks and a contributor to the Journal of the American Medical Association, as well as an adjunct professor of bioethics at the Boston University School of Public Health. Yet, it was her direct experience of family caregiving-not her considerable expertise-that initially arrested the attention of long-term care professionals attending the program.
"My stepmother suffered a stroke at the age of 75; my then 74-year-old father chose to be her primary caregiver," Friedman recalled. "Carrying her around for six years produced such stress on his back that within six months of her death he was confined to a wheelchair, in which he spent the last 10 years of his life."
Friedman also described the caregiving demands borne by numerous friends of hers. For example, Kelly, a single mother of two, gave up her position as vice president of a flourishing organization in Arizona to move to Wisconsin to care for her mother. Now Kelly is struggling to establish a freelance career "that will allow her to take care of both her children and her mom," Friedman said.
Another friend, Winston, recently moved his mother, after she had a severe stroke, from her Baltimore home to an assisted living facility in Chicago, near where he lives with his partner, Dan. Friedman said, "Despite the soft [housing] market, Winston and Dan were able to sell her home, which will pay for about six months' care. After that, they will have to go into their 401 (k)s."
Family scenes like these are occurring nationwide, mostly involving caregivers in their 405 and 505, people who "have a very long road ahead of them," Friedman said. She examined essential forces affecting people with chronic illness and their families-forces that, for better or worse, are reshaping Healthcare in the United States.
Because women in the United States outjive men by about six years on average, Friedman said, among those 65 and older/there are only 72 men for every ioo women. Among elders ages 85-plus, there are only 46 men for every ioo women. "Furthermore," she stressed, "far more women [than men] will be living alone and living in poverty." With mass longevity will come escalating numbers of people with chronic and disabling conditions.
Another consequence of population aging, Friedman said, will be a healthcare workforce "that is much older and whose scope of work, whose assignments and whose personal needs are going to have to be honored." She emphasized that the United States is still not facing the prospect of being dependent on nurses in their 505 and 6os, who will outnumber nurses in their 20s. Friedman said a shortage of homecare workers and other paid formal caregivers is likely.
Multicultural issues will also become increasingly important, she said. For example, additional constraints on immigration could further limit the supply of workers in home and community-based care (HCBC). Also, Friedman said that the growing ethnic and racial diversity of the older population will exact significant changes in caregiving. She predicted, "We are going to see changing roles of women and men and of sons and daughters, [differing patterns of] acceptance or rejection of institutional care and the desire for culturally and religiously sensitive caregiving."
"The next force that will rock healthcare is rampant public and patient consumerism," Friedman said. One key development prompting consumers to learn as much as possible about their healthcare is their distrust of corporations and government because of, she said, "the avalanche of scandals," such as revelations about and recalls of prescription drugs. Other factors, she stated, are growing impatience with the traditional "me-doctor, you-patient relationship," and a far more knowledgeable patient population, a phenomenon aided by the Internet,
Friedman went on, "I think it is also important for us to understand that the older and disabled patient today is not the passive, compliant patient of yesterday." Although most people ages 65-plus do not currently use computers, this situation will change with the aging of the boomers, she said. She cautioned, though, that as the healthcare system becomes increasingly dependent on the Internet, "we should make sure that other forms of communication are available, such as telephones, written materials and-heavens to Betsy-personal contact."
One essential shift, Friedman said, is the movement from institutional care to HCBC. "The bad news is that this puts more responsibility onto family caregivers; the good news is that more and more vulnerable people are being able to live on what is closer to their own terms," she stated.
Some government health initiatives have bolstered this movement, such as self-directed care, which allows eligible people to spend money allocated to them as they see fit, usually to compensate family caregivers. But Friedman cautioned that public funding for even popular programs "can always be fluid."
For instance, she said, the Medicare hospice benefit was sold to legislators in the 19805 as a cost-saving measure, not as a program enhancing patient self-determination and compassionate care. Patients, however, have increasingly outlived the law's restriction allowing hospice care only for those deemed to have no more than six months to live.
Now, Friedman said, "hospice is in danger of being deemed not as cheap as we thought, which could endanger its future, particularly as many hospice programs expand the scope of what they do well beyond traditional palliation." HCBC for vulnerable people, she stated, "has to be advocated for because it is the right thing to do and not simply because it appears to be inexpensive."
Acknowledging that the escalating cost of healthcare in the United States profoundly affects both public and private coverage, Friedman said that the future of Medicare and Medicaid coverage is especially troubling. According to the annual Social security Trustees Report, Medicare is now scheduled to go into financial red ink in 2018, so its current "threadbare" level of coverage for chronic illness is unlikely to be increased soon.
Congress cut Medicaid, a means-tested poverty program, last year, and the White House is proposing more reductions. Although federally approved waiver programs that allow states more flexibility in coverage have led to improvements in care in some states, Friedman said, others-notably Texas, Missouri and Tennessee-"have simply thrown hundreds of thousands of people off the program." Regarding efforts by several states to expand health coverage to all of their citizens, she pointed out that "none of these programs includes nonacute care."
Furthermore, she said, "The private long-term care insurance market, despite energetic efforts by many people, simply hasn't gone anywhere." The basic actuarial problem for insurers, Friedman said, is that the cost of coverage for older policyholders, those most likely to need long-term care coverage, will remain "astronomical" until much younger people can be convinced to buy policies, thus spreading the risk and lowering the cost for everyone-something not apt to occur soon. For the foreseeable future, she predicted, coverage of chronic disease and family caregiving will continue to be based in Medicaid and out-of-pocket payments.
Additionally, Friedman underlined that the shift of Congress to Democratic control offers "no guarantee of proper funding for programs that support family caregivers." She explained, "It's important to understand that health policy issues tend to be lose-lose situations for policymakers." She added that politicians invariably anger some supporters when they try "robbing Peter to pay Paul for healthcare or taxing people to provide Medicaid coverage for disabled people in another part of town, or trying to curb healthcare profiteering and fraud in order to round up funds to protect the uninsured."
Additionally, Friedman urged those in long-term care to be concerned with the lack of basic healthcare coverage for 47 million Americans, "along with another 15 to 30 million whose coverage is so skimpy that they are classified as underinsured." This number includes many family caregivers, she said. Among women caregivers under age 65-the majority of those providing care-at least 20% are uninsured, she said.
She added that those with coverage usually have time-limited COBRA policies from jobs they left, often to become caregivers, "or they are in the dysfunctional individual market," now including 16 million people stuck with "sky-high prices, poor coverage and insurers being very picky about'health status." Friedman continued, "About half of family caregivers .have a chronic condition themselves, which makes it very unattractive to insurers."
Further complicating the healthcare future of the United States, Friedman said, are such "wild cards" as disasters, both natural and human-made, or epidemics and pandemics.
In spite of the bleak prospects Friedman sees for unproved support for family caregivers, she stressed, "What will determine our future is what we do with the information." She urged caregivers, "If we don't put family and community care of the chronically ill on the health policy agenda, it's unlikely that somebody is going to do it for us."
Friedman called on the caregiving community "to keep your eyes on the prize... and to pursue it, even if it takes longer than anyone might wish." She recalled the words of the late U.S. Senator Jacob Javits, R-N.Y., who spent his last years suffering from amyotrophic lateral sclerosis (Lou Gehrig's disease). Near the end of his life in 1986, Javits observed, "In healthcare it strikes me that the issues are three: realism, dignity, and love."
Family caregivers 'have a very long road ahead of them.'
About half of family caregivers have a chronic health condition.…