Families on Call

There are 25.8 million family caregivers in America today. According to a recent study by the United Hospital Fund of New York, they provide the equivalent of nearly $200 billion worth of health care services per year. That's almost double the annual amount the United States spends on nursing home and home health care. Yet when the press and the policy experts tally up the rising costs of a health care system in crisis, they routinely omit family caregivers' enormous contributions of time, energy, and emotional and financial resources--all of which are expended in the isolation of private homes.

The resulting invisibility of family caregiving may be understandable, but undervaluing this critical component of our health care system is economically shortsighted and morally unacceptable. Given current demographic trends, a lot more of us are going to need more family care--and soon. Advances in public health, medical treatment, and nursing care have, in fact, produced more people in need of family caregiving for longer periods than ever before in human history. Many of the elderly Americans who live into their nineties, or even into their hundreds, have serious chronic illnesses that make them dependent on family caregiving. So too, many of the infants, children, and adults who are saved by the miracles of medical treatment and technology will require both high-tech and "low touch" family caregiving--often for decades.

Cost cutting in the U.S. health care system is, moreover, built on the shifting of costs onto the nonprofit safety net of last resort: unpaid family caregivers. More of the sick are now treated on an outpatient basis only--or they're being discharged from the hospital sooner than in the past, regardless of their condition. These patients often need round-the-clock care, but there is no longer a doctor or nurse available to provide it. Instead, a family member provides most care at home, and that family member is usually a mother, wife, or daughter. The price she may be forced to pay in terms of reduced income, missed promotions, lost jobs, or even personal bankruptcy--not to mention physical and emotional strain--just isn't part of the cost-shifting calculus of hospitals or health plans.

Two recent books set the record straight on the realities, costs, and benefits of family caregiving. Carol Levine's collection Always on Call deals with the contemporary caregiving scene, presenting personal portraits of family caregivers and then exploring the social, financial, and moral ramifications of a public policy that not only, as Levine writes, "looks first to families but that ... generally looks only to families and fails to support those who accept responsibility [for their loved ones' care]."

Emily K. Abel's Hearts of Wisdom is based on material from women's diaries and letters, as well as the official records of government and charitable agencies. With its emphasis on the long-standing tensions between family caregivers and medical and nursing experts, government bureaucrats, and social reformers, it restores visibility to women whom historians have often neglected.

Both books highlight not only the burdens of family caregiving but also its rewards. Abel, professor of health services and women's studies at the University of California, Los Angeles, expresses the feelings of many family caregivers. Abel took care of both her father and her mother when they were sick and dying. When she herself was diagnosed with cancer, family members cared for her. "As both a provider and receiver of care, I have seen firsthand how caregiving can reignite family conflicts, impose financial stress, and encroach on both work and leisure," she writes. "But I also have gained a deeper appreciation of caregiving as a transformative experience, introducing us to new forms of human connectedness."

The goal of her book is therefore "to identify both the conditions that make this essential endeavor rewarding and meaningful and those that increase its burdens." The characters we meet in Hearts of Wisdom include farm women, enslaved women, middle-class women, and poor immigrant women. The first part of the book takes us back to a time when women were the only doctors and nurses around. They were the ones who stitched on amputated fingers, dosed their loved ones with home remedies, and sacrificed professional aspirations to take care of a mother or father. Their caregiving was not performed in isolation but in a community of women who helped one another deliver babies, tend the sick, and bring spiritual solace to the dying. The detailed accounts that some women kept of their caregiving careers are truly remarkable. One Kansas woman, Martha Shaw Farnsworth, began her 4,000-page diary in 1882 when she was 14 years old and maintained it faithfully until her death in 1924.

Abel's inclusion of the caregiving dilemmas of poor and enslaved women allows us to see a different dimension of family caregiving. "Most scholars of caregiving today emphasize the various forces compelling women to render care, but poor women, especially women of color, historically have had to fight to be able to care for kin," Abel notes. "The inability of enslaved women to protect their children was one of the cruelest features of slavery."

Indeed, for slaves who were given no time away from their labors to care for kin, caregiving was a positive privilege. Slave owners viewed slaves as too ignorant to provide safe treatment to their family members and often prohibited them from using reliable folk remedies. When slaves needed medical care, their masters often forced them to submit to treatments that were dangerous and ineffective.

While many historians of the health care system have chronicled the medical profession's internal struggles to control medical education and practice, much of Abel's study explores an equally compelling aspect of the battle for medical hegemony: the wresting of control of knowledge and power from female caregivers. In the mid-nineteenth century, doctors had little to offer the woman caring for her kin at home. "Because doctors could not demonstrate superior knowledge, women often garnered the satisfaction of making medical decisions on their own and honing and displaying skills; a few received special recognition as healers. Caregivers who assumed responsibility for the spiritual well-being of care recipients often deepened their own religious faith."

Early doctors delivered medical treatment in the home, where a woman generally scrutinized their performance. Physicians were profoundly uncomfortable with the authority and oversight of female family caregivers. As medicine amassed more scientific knowledge, physicians, Abel explains, began to assert their control by belittling "the solicitude and comfort informal caregivers offered. Arguing that family and friends disturbed and alarmed patients, doctors sought to disperse bedside attendants and sickroom visitors. In addition, doctors differentiated themselves from informal caregivers by touting the superiority of universalistic, as opposed to particularistic, knowledge."

Although nurses like to claim that they have been more family-friendly than physicians, Abel debunks this current mythology, arguing that nurses were just as eager to distinguish themselves from traditional female caregivers. Indeed, some nursing leaders clearly felt that the only way to justify the existence of a professional cohort of female caregivers was to assert their superiority over "informal" family caregivers at home. (Surprisingly Abel frequently uses the term "informal" to describe caregiving that is hardly casual or ad hoc.) "Perhaps patients alone appreciate the well-taught nurse and understand the many fine distinctions that fill the gap between her and the untaught," a superintendent of the Visiting Nurse Association of Chicago wrote in 1923.

In examples taken from confrontations between American Indian women and "field nurses" hired by the Bureau of Indian Affairs, Abel documents that nurses also subscribed to the "notion of reason transcending historical and social conditions" and thus "denied the possibility that American Indians could be active participants in the construction of meaning and knowledge."

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One of the great contributions of Abel's book is to show that the development of the modern health care system "did not eliminate but rather transformed caregiving," expanding it to "include not just taking patients to medical appointments and visiting them in hospitals but also pressing claims on behalf of family members and negotiating with government bureaucrats." She brings these often torturous negotiations to life by exploring the confrontations of mothers of tubercular, "feebleminded," epileptic, and deaf children with social agencies.

Throughout the early- to mid-twentieth century, medical experts promoted the institutionalization of such children. If mothers objected, the experts depicted their affection and ministrations as dangerous at worst and misguided and insufficient at best. Experts stigmatized poor immigrant parents because they did not speak English or could not maintain proper sanitary conditions. If they resisted institutionalization they were labeled as "noncompliant," "difficult," and "overly attached."

In order to navigate the bureaucratic obstacle course and obtain needed services, without losing total control, mothers had to master expert jargon and conform to upper-middle-class definitions of social worthiness. "Appealing to Washington on the basis of their children's unique qualities, the mothers relied on the same distinction between the deserving and undeserving that the larger society used to justify the exclusion of all mentally disabled children from social programs," Abel writes, describing the maternal minuet with government agencies.

Although Abel is clearly on the side of the mothers in these struggles, she never makes the mistake of romanticizing her subjects. "Our desire to restore agency to poor caregivers," she warns, "should not blind us to the fact that the advice they disregarded often addressed real needs. Caregivers who refused to clean sputum cups adequately, segregate tuberculosis sufferers at home, or enroll them in institutions, endangered other family members."

Concluding with a brief look at the contemporary experience, Abel explains that family caregiving in modern America tends to isolate women rather than strengthen communal bonds. Caregiving burdens are heightened by policies of medical deinstitutionalization. These stand in ironic contrast to early-twentieth-century public health policies. "Whereas early-twentieth-century advocates of institutionalization emphasized the disadvantages of family connection, contemporary proponents of deinstitutionalization stress the need to humanize the health care system." The need to master complex medical equipment, which turns the home into a hospital, does not lighten the modern woman's load, and politicians and policy makers continue to be obsessed with the need to "prevent caregivers from unloading their responsibilities on the state, astronomically increasing its burdens."

Abel's book provides historical perspective on the six personal stories and policy essays in Always on Call. The family caregivers who tell these stories include a graphic designer who cares for her mother and an aunt with dementia; a gay rights activist who looks after his brother who has AIDS; a husband and rabbi who cares for a wife who suffered brain damage as the result of two aneurysms; a social worker who tries to lighten the load of her father while he cares for her mother--who has Parkinson's disease; a teacher who, for 23 years, raised her only son while caring for a husband with heart disease; and finally, Levine herself, who has spent the past nine years caring for a husband who was left a quadriplegic after a car accident.

Their experiences are colored not only by their dealings with the doctors and public agencies described in Abel's book but with insurance company bureaucrats. The employers and insurance company executives who are behind the dehospitalization mania that is sweeping America insist that their policies are actually family friendly. One senior vice president of a major HMO recently extolled the practice of early patient discharge from hospitals on the grounds that it strengthens family relationships. After all, he blithely confided, until only recently, family members took care of their loved-ones at home and the family was stronger for it.

What these bureaucrats fail to understand is the distinction Levine's book makes so well: Playing the role of family caregiver to a sick and vulnerable loved one is not at all like playing the role of modern husband or wife, son or daughter. "During my nine-year odyssey, I stopped being a wife and became a family care giver," Levine explains in her essay "The Loneliness of the Long-Term Caregiver." "In the anxious weeks when my husband was in the intensive care unit, I was still a wife... . I date my rite of passage into the role of family care giver to the first day of my husband's stay in a rehabilitation facility... . A nurse stuck my husband's soiled sweat pants under my nose and said, 'Take these away. Laundry is your job.'"

Caregivers today are also asked to monitor high-tech medical equipment and to administer complex drug regimens that may include more than a dozen medications with potentially fatal side effects and interactions. And while sick people in the nineteenth and early-twentieth century may have lived for a few weeks or years, today's family caregivers may provide their unpaid labor for two or three decades.

Neither Levine nor any of the other authors in this volume wants to off-load the care they provide for a family member. What they seek is education, respite, and support--little of which they get. In one of the most heart-wrenching illustrations of the toll this kind of caregiving takes, social worker Gladys Gonzalez-Ramos describes the potential consequences of this lack of social support. For years her father took care of her mother, who had advancing Parkinson's disease. As a result of his 24-hour-a-day, seven-day-a-week burden, he became socially isolated. At one point, he put his wife in a nursing home, but she was so badly treated and became so despondent that he took her home again. As her father became more and more depressed, Gonzalez-Ramos tried to get him psychiatric help. But one Sunday afternoon, he covered her mother's face with a towel and shot her three times. He then "positioned himself by the window of their 11th floor apartment, sat on the ledge, shot himself once in the mouth, the shot propelling his 11-story fall."

While few caregivers take such dramatic action, most, as Rabbi Gerald I. Wolpe puts it, "are in an almost constant state of caregiving," logging an average of 17.9 hours per week on the job. No wonder so many family caregivers themselves experience the home care equivalent of occupational illness. Wolpe ended up in intensive care after a heart attack. And Carol Levine reports that her managed care company one year paid more for her "stress-related medical problems" than for her husband's medical care.

Although the authors in this book are hardly impoverished immigrants pleading for help from charitable organizations, echoes of the theme of "worthiness" discussed at length in Hearts of Wisdom reverberate through Always on Call. It seems that the sick are worthy in America only if they recover rapidly and return to work. The same is true of family caregivers. They are worthy of social esteem--but not social support--only if they refrain from protesting insurance company policies, shoulder without complaint all the considerable financial burdens of caregiving, and never allow their family care duties to interfere with their on-the-job performance.

This is a point made by Gail Gibson Hunt, executive director of the National Alliance for Caregiving, in "Caregiving and the Workplace." She details the abysmal failure of American employers to acknowledge and accommodate contemporary family caregiving. Gibson Hunt cites, for example, a 1999 study of relatively well-to-do family caregivers with long work histories. Respondents said their caregiving activities limited their ability to gain greater job skills, get promotions, and travel for work or relocate. Two-thirds reported a reduction in income; 26 percent of those with the heaviest caregiving burdens had to take a leave of absence from work; and 30 percent had to quit work entirely.

Ironically, Gibson Hunt points out, workplace policy--or lack of it--actually adds to employer expense in the form of "replacement costs for employees who quit due to caregiving responsibilities, absenteeism costs, costs due to partial absenteeism, costs due to eldercare crises, extra time spent supervising employed caregivers." A 1997 MetLife study estimated that "the aggregate costs of caregiving in lost productivity to U.S. businesses ... is $11.4 billion per year--counting only those caregivers working full-time and providing personal, hands-on care."

Both Always on Call and Hearts of Wisdom suggest specific policy remedies. We need a family-and-medical-leave act that offers paid time off work to care for the sick. Family caregivers need more education, delivered over the duration of their caregiving careers, and they themselves need respite care so they can fulfill their obligations without sacrificing their own health. A long-term care policy that saves the middle class and working poor from impoverishment would help. And of course, there is the small problem of this country's failure to implement the same kind of universal health care system that is standard in other industrialized societies.

But no progress is likely until family caregivers join together to fight for change. And this, Raymond L. Rigoglioso, of the United Hospital Fund writes in an essay entitled "Your Money or Your Life," will happen only if family caregivers "recognize that they are more than just individual family members fulfilling familial duty. They must recognize that they are a part of a group largely ignored by a health care system that only views them as a means of saving money. They must reach out to their allies, organize, and demand change."

Although neither book provides an answer, both raise an important question: How do you mobilize people whose relentless battles for care and services make them feel demoralized and powerless? This is precisely the difficulty social activists have in creating a broad movement for fundamental health care reform. Those who have the most pressing and immediate stake in changing our health care system--the sick and their families--are the most vulnerable and isolated. They have little emotional energy for political activism.

This is why outreach to--not only outreach by--patients and family caregivers is so important. Health care activists, as well as disaffected nurses, doctors, and other health care professionals and workers, must draw patients and family caregivers out of the isolation of their own homes and illnesses and into a mass movement for fundamental change. Dramatic actions that empower people and arguments that concretely explain what these patients and family caregivers have to gain from reform are also needed.

I often dream of a huge march on Washington--the Million Patient and Caregiver March. I imagine doctors, nurses, and other health care professionals and workers dressed in their scrubs and whites wheeling their patients through the streets of the capital with family caregivers at their side. Sometimes that dream morphs into a Take Your Politician, Policy Maker, or Journalist to Care Day--the caregiving analogue of the Take Your Daughter to Work Day that has become so popular in the last few years. On these days, hospitals and nursing homes, hospices and community clinics--as well as individual families--would open their doors and invite reporters, politicians, decision makers, and opinion shapers to spend a day with a caregiver: a nurse, a nursing-home aide, a primary care doctor, a family caregiver. Perhaps then reporters could amplify the typical coverage of medical miracles with follow-up stories that show the level of family caregiving that such medical successes depend on. That would certainly not be enough to transform the world, but it would demonstrate quite dramatically that there is a fundamental moral flaw in a system that criticizes family members who don't take care of their loved ones while punishing those who do. ¤

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