Sick To Death > Chapter 1 > Who Will Provide Care?

Sick To Death book cover This extract from the online edition of Sick to Death and Not Going to Take It Anymore! is used with permission.

Who Will Provide Care?

Living out the last years of life with serious chronic illness poses challenges that simply did not arise when people died quickly from heart attacks, pneumonias, childbirth infections, or influenza epidemics. Most people living with serious, progressive chronic illness need some other person's help just to get through the day, often every day, and sometimes constantly.

Unfortunately, our health-care and social systems have not yet fully recognized or begun to prepare for the upcoming frequency and extent of caregiving that the aged boomers will require. Indeed, most Americans have not absorbed the eventuality of needing to provide care for loved ones, and then needing it for themselves. Few people make plans to anticipate that sequence.

Foremost is the challenge of meeting the needs for hands-on personal care. Since most older people prefer to live in their own home or with family for as long as possible, both family and paid in-home caregivers are essential (McCorkle and Pasacreta 2001; Abel 1990; Koffman and Snow 2001; Ferrell 1998). Unpaid family caregiving has always been the backbone of long-term care. In a national random survey of adults in 2000, more than one-quarter stated that they had provided care for a chronically ill, disabled, or aged family member or friend in the past year. That translates into more than 50 million volunteer caregivers (National Family Caregivers Association 2000a). The federal Administration on Aging estimated that at any one time 22.4 million persons are providing family care (Administration on Aging 2003).

For married elders, the first one to develop an eventually fatal chronic illness can usually rely on the spouse for most of the direct care needed. In a study of all caregivers assisting people age sixty-five and older, spouses accounted for 24 percent, daughters for 20 percent, and sons for 6 percent, meaning that immediate family members are 50 percent of all caregivers (Kassner and Bectel 1998). The onset of illness in the care- giving spouse or in a widowed or unmarried elder often precipitates a crisis for the rest of the family, especially for the daughters and daughters- in-law, who most often assume the role of caregiver (Kassner and Bechtel 1998). Greater opportunities for women today in education and the workforce leave fewer unpaid workers for family care. Smaller family size and higher divorce rates also leave a smaller group of potential family caregivers (Noelker 2001). Single elderly people, whether widows, widowers, or unmarried, often must rely upon paid services (Tennstedt 1999). Even when children can pitch in to help with care, the need for paid help remains substantial (National Family Caregivers Association 2000a).

While most people who provide care to a family member do so out of loyalty and love, and most find it meaningful, the challenges of family caregiving are weighty (Assistant Secretary for Planning and Evaluation and Administration on Aging 1998). Depending on the family member's situation and health problem, family caregivers can assist with daily living tasks, with monitoring symptoms and general health, with administrating medications, and with coordinating care among health and social service providers, as well as with providing emotional support (Biegel, Sales, and Schulz 1991; Vitaliano 1997). The care system that a caregiver must negotiate is maddening in its lack of coordination and coherence. The average caregiving load is eighteen hours of direct services per week. Those providing care for persons who need help in at least two or more activities of daily living (activities like moving around, going to the toilet, or feeding and dressing oneself ) average forty hours per week (National Alliance for Caregiving and the American Association of Retired Persons 1997). The majority of these caregivers hold paying jobs also, though one-third of those have incomes near the poverty line (Rigoglioso 2000). Two-thirds of family caregivers report that caregiving responsibilities have required that they rearrange work schedules, work fewer hours, or take unpaid leaves of absence. In addition, caregiving work can - and does - cause health problems for the caregiver (Schulz and Beach 1999; Kiecolt-Glaser et al. 1996). The average unpaid family caregiver is sixty years old. In a study of caregivers in New York City, 80 percent of the family caregivers had a serious chronic health problem themselves, and half had been caregivers for more than five years (Levine et al. 2000).

What has changed to make caregiving to the elderly a major challenge, when it seemed natural in the past?

First, reliance on family and friends a century ago was intense but brief; people were simply unlikely to live long with any severe disability. Now, family members have to give up work, rearrange households, and change their life plans for an indefinite - and often lengthy - time. The fragility of the ill person's life often calls for all manner of assiduous care, such as frequent cleanings, medications, feedings, and exercises. When medical issues arise, treatments often keep the patient alive but require even more intensive caregiving - doctor's visits, medications, hospitalizations, and visits to therapists. This intensive caregiving can go on for many years.

Second, in those "old days," the few disabled persons living through the last part of life had many descendants to rely upon. They might well be sole grandparents within large extended families. Now, the ratio of disabled elderly to their progeny is much smaller because family size has dropped at the same time that more elderly survive longer (Himes 1992). By 2020, an estimated 1.2 million people age sixty-five or older will have no living children, siblings, or spouses (National Aging Information Center 1996). In 1990, for each person over eighty-five years old, twenty-one people were between fifty and sixty-four; in 2030, only six will be in those prime caregiving years (Institute for Health and Aging 1996).

Third, today's potential caregivers ordinarily work outside the home, unless they have become ill and disabled themselves. When a woman took in a family member a century ago, she was already working at home. Now, she may have to give up her own income or accept less pay or advancement, if she herself is young enough to be employed and healthy enough to take on the hard work that elder care often requires. Since a family member who needs help at ninety-two years of age may have children who are past seventy, the nearest kin often already have their own health problems. Thus, an arrangement that was once fairly natural and routine now poses a real family crisis.

Fourth, the workforce for paid home health aides and home-care nurses has been shrinking. Once, home-care nursing was one of the few avenues for steady employment for poorly educated or otherwise unskilled women. Many immigrants found home nursing to be a way to have a safe abode and an income. It is, however, very hard work, often with difficult relationships and serious language barriers. Home care rarely offers health insurance, vacations, or other employee benefits. In addition, immigrating is harder, especially for those with few skills. The shortage of home health aides, combined with the problems in family caregiving, means that not enough hands will be available to provide all of the needed bed baths, feedings, or supervision. Increasing the availability of paid personnel to provide care may well require engendering career ladders, reasonable working conditions, and living wages - all of which entail costs (Rimer 2000).

Family caregiving has its costs too. As Senator Hillary Rodham Clinton has said, "Just because family caregiving is unpaid does not mean it is costless" (Lynch Schuster 2002). Indeed, the price tag on replacing family caregiving would be remarkably high: Arno and colleagues estimated its market value at $196 billion annually (Arno, Levine, and Memmott 1999). The costs to the family are only beginning to be understood. The daughter or daughter-in-law who up-ends her nuclear family's lives in order to provide for her parent or parent-in-law might be appreciated within the family, but she is also often forgotten by neighbors, churchgoers, friends, and employers. She gets a reduced pension and Social Security, risks going without health insurance, and has no disability protection. Because gender and caregiving limit women's savings and pensions, new-onset poverty in old age may largely affect women (Employee Benefit Research Institute 2002; Older Women's League 2004). Women now spend as long in caregiving for adult family members as in caring for children (Hooyman and Kiyak 1996). Nevertheless, women relatives continue to provide most of the hands-on care, with substantial variation by factors such as age, ethnic background, and proximity of family members.

Several studies have demonstrated the devastating effects of living with or caring for someone with a serious chronic illness. One-third of the families of hospitalized patients with serious illness lost most or all of their savings (Covinsky et al. 1994). The financial burden reflects not just the need to pay for medical services but also the lackof wages and benefits while providing care. In one study, family caregivers lost about $650,000 on average over a lifetime, considering wages, Social Security, and pension benefits (Metropolitan Life Insurance Company 1999).

One strategy would be to turn to paid caregivers. Paid vocational workers (not registered nurses) provide more than three-quarters of care in nursing homes and more than nine-tenths of paid care at home (Atchley 1996). By 2010, when the first baby boomers reach old age, the pool of middle-aged women available to provide low-skilled basic services will be substantially smaller than it is now (Feldman 1997). With pay scales barely above minimum wage for very difficult work, and with little or no health-care or disability insurance, few people find this line of work economically attractive (Himmelstein, Lewontin, and Woolhandler 1996; Wilner 2000). Citizens for Long-Term Care advocates such obvious workplace improvements as a living wage, a safe workload, adequate training, career opportunities, and employee supports such as child care and transportation (Citizens for Long-Term Care 2003). These demands, of course, have been part of industrial workers' contracts for many decades. A report to Congress from the Department of Health and Human Services and the Department of Labor reiterated these needs, framed by the recognition that, by conservative estimates, the United States will need three times as many paid long-term-care workers in 2050 as we will have in 2010 (U.S. Department of Health and Human Services and Department of Labor 2003).

In addition, the United States is in the midst of a shortage of nurses that will intensify as the baby boomers age and the need for health care grows. According to a July 2002 report, forty-four states plus the District of Columbia will have registered nurse shortages by the year 2020 (Health Resources and Services Administration 2003). More than one million new nurses will be needed by 2010 (U.S. Bureau of Labor Statistics 2001). Yet the number of first-time U.S.-educated nursing school graduates who sat for the national licensure examination for registered nurses fell by 25 percent between 1995 and 2002 (National Council of State Boards of Nursing 2002). Moreover, 75 percent of all hospitals have vacancies for nurses already (American Hospital Association 2001).

Whereas other nations provide payment, respite, tax breaks, training, and other support for family caregivers, the United States generally does not. Under Germany's plan, for example, patients requiring long-term care can choose between the formal care system and a cash payout, which allows them to pay family members who provide assistance. In addition, these paid family caregivers receive pension credit and qualify for respite services (Noelker 2001). The United States does have a limited demonstration project like this, called Cash and Counseling. Generally, though, the United States provides almost no regular or reliable support to family or paid caregivers who serve patients with eventually fatal chronic illness. While finding the financial and structural resources to care for large numbers of disabled elderly in 2020 will be challenging on many fronts, the coming shortage of persons able and willing to provide hands-on care appears to be the most implacable challenge.