Carol Levine directs the United Hospital Fund's Families and Health Care Project, which focuses on developing partnerships between health care professionals and family caregivers, especially during transitions in health care settings. She contributed a chapter on family caregiving for RSF's free e-book, Universal Coverage in Long-Term Care in the United States.
Q: Your chapter looks at the position of the family caregiver in providing long-term care in America. You had to take on this role after your husband suffered a brain injury – could you talk a little about your experience in dealing with institutions and health personnel during this period? What surprised you? Where did you feel the system made it harder for you in your role as a family caregiver?
A: My late husband and I were in an automobile accident in January 1990. While I was uninjured, he had a severe brain stem injury, was in a coma for four months, suffered a medical error that caused the amputation of his right forearm, and was finally able to come home after months of rehab. He was quadriparetic, meaning that he had no use of his remaining arm or legs, and had impaired cognitive function. I was surprised–appalled would be more accurate–to find out that he was not eligible through his private employer-based insurance for any paid home care after a few weeks because he was considered a "custodial" case. He was not even eligible for physical therapy that might maintain the progress he had made in rehab. No one told me the truth about his prognosis or the incredibly difficult care he would need at home. As for me, doctors, nurses, and social workers assumed that I would quit my job, spend all our resources, and go on Medicaid. I was told quite frankly, "Your life is over. Get used to it." I did not accept that ungracious advice, continued to work, paid privately for home care and physical therapy, and kept him home for 17 years. The health care system was quite willing to spend enormous resources to save his life but not a penny to maintain his quality of life or to support me in my willingness to keep him at home and out of a nursing home at public expense. When we left rehab, the staff cheerfully waved goodbye and said, "You’re on your own now." No one should be abandoned like that.
My work at the United Hospital Fund since 1996, directing the Families and Health Care Project and the Next Step in Care campaign, has been devoted to changing the system so that other family caregivers are treated more humanely and supported in their choices.
Q: You argue that family will – and should – remain the primary provider for long-term care for the elderly. And yet, there is a widespread perception that Americans have, as you write, "abandoned their elderly relatives en masse." Give us some data on the subject – whom do most older people rely on for care and assistance?
A: Most older people are cared for in the community—in their own homes or in family members’ homes. At least 80 percent of long-term care – or long-term supports and services, in the newer terminology – is provided by family members, typically adult children and spouses, but also other relatives, partners, and friends. They generally do this without the assistance of the formal health care system – nurses, home care aides, therapists, and others. They provide personal care, household management, and increasingly medical/nursing tasks like managing various types of medication, wound care, monitoring medical equipment, and other daunting tasks. The formal home care that is available through Medicare or private insurance is short-term and part-time, typically after a hospitalization. Medicaid does pay for long-term care, largely in nursing homes but also for some people in the community. Medicaid home care services vary considerably by state.
Despite the evidence, the perception that Americans abandon their elderly relatives is pervasive, and the idea that placement in a nursing home equals abandonment is similarly pervasive. A relatively small percentage of older adults reside in nursing homes, some of which provide very good care. Currently 1.5 to 1.8 million people—about 4 percent of the population over the age of 65--live in nursing homes. Two thirds are female with a median age of 82. Nearly all (92.8 percent) have mobility impairments, three quarters (77.8 percent) have cognitive impairments, and over a third (37.2 percent) have sensory impairments, such as hearing or vision loss. These are people for whom community living, while not impossible, is very difficult and often beyond the capacity of family members to provide. And even when a relative is placed in a nursing home, most family members still stay closely involved, monitoring care and providing emotional support.
Why does this abandonment myth persist? Perhaps it is misplaced nostalgia for an imaginary time when all older people were wise and generous and were cared for at home, when women stayed home and out of the workforce, and when everything was simple and sunny. This picture does not conform to historical reality, but its attractiveness persists.
Q: You write that we should focus on how policy can help families deliver long-term care. Before we look at that, could you talk a little about the stresses and demands of caregiving? What does the research show about its effects on caregivers?
A: Many studies have shown the serious effects on the mental and physical health of family caregivers, and on their employment and finances as well. Between 40 and 70 percent of family caregivers have clinically significant symptoms of depression, which increase as the care recipients’ health declines. The number of hours a week a caregiver spends on the job, as well as the length of time one is a caregiver (usually underestimated at the start) have an impact on mental health. Stress is a particularly common consequence. Stress is not just a mental state; it can lead to physical problems such as high blood pressure, immune system deficiencies, cardiac problems, headaches, and fatigue. Caregivers are at higher risk of all these problems than their non-caregiving peers.
Caregivers generally report poorer health status than their peers, and fail to follow preventive health measures. They pay more attention to the medications of the person they are caring for than to their own. At the extreme end of a spectrum of health problems, older caregivers who experience strain are more likely to die than their peers, often before the person designated as care recipient does. A caregiver’s failing health is often one reason for placing the care recipient in a nursing home.
In a troubled economy, caregivers are at risk for financial strain as well. About half of all caregivers are employed. Their jobs may be in jeopardy if they take too much time off or refuse assignments that call for travel or other arrangements. As I learned, it may be necessary to hire home care workers privately to continue employment. Many essentials–incontinence supplies, customized wheelchairs, home modifications—are not covered by insurance. Long-distance caregivers have large travel expenditures.
Most family caregivers do not think about their own long-term needs. If they quit their jobs or take extended leaves, they lose out on accruing Social Security benefits and other retirement plans. They may also lose their access to health insurance.
It is not unusual to find that after an extended long-term care situation, the older family member has spent all his or her resources and the family caregiver has come close to that as well, impoverishing two generations and leaving little for the younger family members to draw upon for their own education and careers.
Q: In a section on "transitions in care," you write that family caregivers must increasingly deal with multiple care settings, as patients are moved from and within hospitals to skilled nursing facilities and back again. Why do these different types of care occur more now? Is it a function of finances, or changes in medical care? How does it complicate the family caregiver’s task?
A: The multiple transitions that patients and family caregivers undergo are mostly related to money. In one sense the introduction of hospital Diagnosis-Related Groups (DRGs) in hospitals in 1983 started this trend. By basing payment not on “reasonable costs” but on predetermined rates based on diagnoses, Medicare and Medicaid created incentives for hospitals to shorten length of stay. If the patient overstayed, based on the DRG for his or her condition, the hospital lost money but if the hospital could discharge the patient earlier than the DRG standard, it saved money. But many patients, while technically stable, were not able to go directly home. Skilled nursing facilities then found a new source of revenue by creating short-term rehabilitation programs, paid for by Medicare, that were more profitable than their Medicaid-paid long-term stay residents. Home care technology agencies and companies grew quickly to supply more services and equipment at home, at least until the Balanced Budget Act of 1997 reduced their ranks.
As a result of these trends, patients and their family caregivers are moved quickly from one setting to another, often with little preparation and training. Errors are likely to occur in these transitions, with patients ending up back in the hospital. As of October 2012, hospitals will incur financial penalties for excessive preventable readmissions. There is a certain ironic inevitability to this outcome.
For patients and family caregivers, these transitions are traumatic, stressful, and frustrating. Some patients literally never recover fully from the experience as the constant changes contribute to their declining function.
Q: Some have proposed offering family caregivers more control by simply giving them more benefits (a tax credit, or a voucher), or more control over the expenditure of Medicaid funds. Have there been any experiments along these lines? Do you think the idea of paying family caregivers to take care of relatives is a politically viable one?
A: Many solutions have been proposed for giving family caregivers more control over the services their family member receives. Undoubtedly a tax credit (which exists in several states) would be welcome but would hardly make a big impact on the financial outlay for those with the highest level of expense and would not matter to those who already pay little or no income tax. Vouchers for something like respite services might be possible in an area where there are ample and reliable services available, but they are also hardly a panacea. Some states have “cash and counseling” or “participant-directed programs” that permit, usually under a Medicaid waiver, the beneficiary to hire and fire his or her own home care workers. Some states permit that worker to be a family member, although others specify which degree of relationship is permitted. Spouses are generally not allowed to be paid in these programs. These programs work well in certain circumstances but are vulnerable to state budget cuts. However, they are only available through Medicaid or other means-tested programs, thus eliminating middle-class caregivers.
Any proposal to support family caregivers must counter the political arguments that “we can’t afford it” and “this is what families are supposed to do.” While policymakers are quick to heap praise on individual family caregivers, especially during National Caregiver Month, they are much less eager to support policies and programs that would make the experience of all caregivers less burdensome.
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