Age bias in stroke rehabilitation: Effects on adult status

AGE BIAS IN STROKE REHABILITATION: Effects on Adult Status

GAY BECKER* University of California-San Francisco

ABSTRACT: Loss of adult status is a potential threat throughout the course of adult life. Rehabilitation has notfocusedon olderpeople, inpart, because American cultural beliefs about aging suggest that little can be done medically for those who are old. The case of stroke illustrates conflicts that occur in applying the rehabilitation ethos to older people. Because recovery from a stroke is seldom complete, and because older people who have strokes may have other chronic illnesses and long-standing impairments that precede the stroke, the case of stroke raises questions about how existing rehabilitation practices andpolicies affect adult status in old age. Based on six years of research with 214 stroke patients and practitioners who cared for them, findings indicate that rehabilitation therapists differentiate patients into two categories: rehabilitation candidates or geriatric care patients. A three-part process is described: (1) the split rehabilitation therapists perceived between providing rehabilitation versus giving geriatric care; (2) the differential treatment of patients categorized as rehabilitation candidates or geriatric care, and (3) patients’ response to treatment. It is concluded that widespread negative attitudes about aging in the United States affect assumptions about the rehabilitation of those who are old and extend to illnesses that are associated with old age, such as stroke. As a condition that exemplifies such attitudes, stroke reflects ageism that has been institutionalized in the rehabilitation system S rules and regulations about progress in rehabilitation and perpetuated in the everyday, hands-on practice of rehabilitation with those who are old. Such policies are primarily intended to limit the use of federal and private insurance resources, and it is therefore suggested that rehabilitation policies pose a threat to adult status for the majority of older people.

*Direct all correspondence IO: Gay Becker, Medical Anthropology Francisco. San Francisco, CA 94143-0850.

Program,

JOURNAL OF AGING STUDIES, Volume 8, Number 3, pages 271-290 Copyright 0 1994 by JAI Press Inc. All rights of reproduction in any form reserved. ISSN: 0890-4065.

University of California-San

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Loss of adult status is a potential threat throughout the course of adult life. Societal norms and values dictate status and attribute social legitimacy at every stage of adulthood (Veevers 1973). Americans define adult status as being a productive member of society (Becker 1994). Productivity, as a core American value, permeates societal institutions such as biomedicine and is a particular focus of the medical specialty of rehabilitation. The impetus for the field of rehabilitation came from medical efforts during and after World Wars I and II to return disabled soldiers to productive lives (Brody and Ruff 1986; Gritzer and Arluke 1986). Once established, rehabilitation became a medic~ly approved way of reconnecting individuals to daily life after catastrophic illness or trauma because it was viewed as enabling recipients to live out American cultural goals of work and productivity (Becker and Kaufman 1988). Defined as the restoration of normal form and function after injury or illness (Dorlands 1965) rehabilitation has been applied primarily to people in youth and mid-life. Rehabilitation has not focused on older people, in part, because American cultural beliefs about aging suggest that little can be done medically for those who are old. Arluke and Peterson (1981) suggest aging and old age are equated with sickness and disease in popular thought. Similar ideas about the nature of old age apparently exist among both lay persons and health care professionals (Rodin and Langer 1980; Sankar 1984). Old people who are ill may describe themselves as useless, the antithesis of productive (Becker 1994; Luborsky 1993b). Negative images of aging held by practitioners towards chronically ill, older people have been illustrated in numerous studies (Ciliberto et al. 1981; Kvitek et al. 1986; Sankar 1986; Young and Kahana 1989). Moreover, these views are reinforced and perpetuated in the health care system through health policy regulations that inadvertently reinforce age bias (Becker and Kaufman 1988; @berg et al. 1990). The widespread association of aging with infirmity and the assumption that loss of function (i.e., productivity) is normal in advanced age (Sankar 1984; Mitteness 1987; Minkler 1990) color health professionals’ views of rehabilitation, and negatively affect. attitudes about the value of using rehabilitation to restore function in old people (Becker and Kaufman 1988; Brody and Ruff 1986). Despite the enthusiasm of a relatively small number of researchers and practitioners who have noted that older people can be returned to levels of independent functioning (Brody 1983, 1987), the rehabilitation of elderly persons is a concept that has yet to take a firm hold in clinical practice. There is conflicting evidence in the literature about the effect of age on rehabilitation (Andrews et al. 1984; Ory and Wiliams 1989). Although age has been linked with severity of condition and poor prognosis for rehabilitation by some investigators (Ahlsio et al. 1984; Aho et al. 1980) other researchers have demonstrated that age is generally not a factor in rehabiIitation for older patients (Andrews et al. 1984; Feigenson et al. 1977; Wade et al. 1984). Kvitek et al. (1986) in research with a sample of 127 physical therapists, found that physical therapists set less aggressive goals for older persons than for younger persons, and concluded that cultural attitudes about old age are embedded in rehabilitation. In studying cost outliers who did not benefit from rehabiIitation, @berg et al. (1990) found higher rehabilitation charges among younger stroke patients and questioned whether this finding was due to less aggressive treatment of older patients. They observed a two-tiered system of rehabilitation services, in which Medicare patients received less rehabilitation than younger, private pay patients.

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Not only is ageism present in the discipline of rehabilitation, it has been institutionalized through exclusionary federal rehabilitation policies, as well (Becker and Kaufman 1988). These policies are carried out through guidelines that have been initiated since data collection began on the rehabilitation unit described in this article, and have resulted in heightening the existing problem. In 1985 the Health Care Finance Administration adopted diagnosis-related groupings (DRGs) as a basis for reimbursement to general hospitals under Medicare. Under the current DRG system, hospitals are not reimbursed for extended hospital stays for rehabilitative purposes unless the facility meets federally mandated guidelines and the designated unit becomes DRG exempt (Pa~enchuck et al. 1990). Since that time many rehabilitation units in acute care hospitals have become DRG exempt, including the unit described in this article. This policy has had ramifications for overall health care delivery as well as for rehabilitation specifically. Acute care hospitals with a DRG-exempt rehabilitation unit can increase Medicare reimbursement by discharging to onsite rehabilitation units (Osberg et al. 1990). Hospitals have thus adapted to Medicare’s cost containment efforts by “dumping” patients to inpatient medical rehabilitation earlier and sicker, when the recommended acute length of stay has been exceeded (Dougherty 1989; Melvin 1988). This practice is problematic because guidelines for such units include the provision of at least three hours of daily rehabilitation therapies, a requirement that many older patients cannot meet because of lack of stamina, severity of illness, and the presence of other health conditions (Becker and Kaufman 1988). The impact on rehabilitation units has been to admit patients who have a higher frequency of acute illness, complications, and readmissions into acute care (Heinemann et al. 1988). As a result, premature discharge from rehabilitation units occurs when improvement or ability to keep up with the pace cannot be demonstrated (LaBan et al. 1992). Moreover, discharge under such circumstances may trigger a sense of failure and defeat among elders who may interpret discharge as others’ loss of hope for their potential to recover (Becker and Kaufman in press). Rehabilitation policy reflects a cultural ethos that espouses productivity and individual responsibility and shapes policy to that end. Sankar (1993, p. 438) has noted that culture has a “tenacious grip” on public policy. Constructs such as independence and frailty carry an implicit script for maintaining society that replicates current values and intergroup structures (Luborsky and Sankar 1993, p. 441). The subtle incorporation of cultural notions about productivity into this sector of the biomedical enterprise provides an example of how culture shapes policy in ways that may be detrimental for persons who are old. The case of stroke illustrates conflicts that occur in applying the rehabilitation ethos to older people. Because recovery from a stroke is seldom complete, and because older people who have strokes may have other chronic illnesses and long-standing imp~rments that precede the stroke, the case of stroke raises questions about how existing rehabilitation practices and policies affect adult status in old age. First, how does age bias in rehabilitation affect the potential of those who are old to return to daily routines and carry on with their lives? And second, how do rehabilitation policies intervene in the fulfillment of this potential?

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THE CASE OF STROKE Stroke-the various pathological processes resulting from disruption in cerebral blood flow-afflicts more than one-half million people in the United States each year, most of them elderly (Baum and Manton 1987; Hartunian, Smart and Thompson 1981). Stroke is an assault on the taken-for granted body, the body as known and experienced. Parts of the brain damaged by loss of blood supply can no longer perform their specific function, whether cognitive, emotional, sensory, or motor. Many aspects of a person’s body, personality, and total sense of being can be, and frequently are, affected. Resulting impairments can be slight or severe, temporary or permanent. Most strokes result in the individual experiencing a certain amount of spontaneous recovery, however slow, but this, too, is unpredictable. When a stroke occurs, the known self is thrown into disarray. The more massive a stroke, the more profound an individual’s sense of disorientation will be because so many critical aspects of bodily knowledge, perception, and personality are rendered dysfunctional. Physical symptoms of a stroke may include paralysis of one side of the body, lack of awareness of the paralyzed side, difficulty or inability to speak or to understand what others say (aphasia and apraxia), difficulty swallowing, incontinence, and impairment to the visual field. Cognitive impairments may include memory loss, the inability to hold a train of thought, carry on a conversation, read, and write. Common emotional symptoms are depression and the inability to control crying and withhold rage. Most stroke victims experience several problems in each of these areas, and some persons experience all of them immediately following a stroke. Recovery is always uncertain immediately following a stroke. “Real” life-as they knew it before the stroke-appears to have ended. Most typically, when individuals have a stroke, they are placed in an acute care hospital for a period of days or weeks. Once the acute phase of a stroke is over, rehabilitation is prescribed for most people in order to maximize the return of function and enable them to learn modes of substitution for what has been lost. Rehabilitation may be initiated in an acute care hospital, a rehabilitation hospital, a nursing home or extended care facility, or at home. Rehabilitation is a lengthy process. It may be as short as one or two weeks or as long as a year or more, depending on the extent of the stroke, the loss of function, and the ability to cover the cost of therapy. The portrayal of rehabilitation as medicine’s answer to devastating disability in American society is problematic. Although rehabilitation medicine is peripheral to American medicine (Kaufman and Becker 1986), it nevertheless espouses certain tenets that can be found to recur throughout biomedicine, tenets that reflect values in American life. As part of the system of chronic care, rehabilitation is in practice distinct from acute care, yet rehabilitation is rooted in contemporary American medicine and reflects an underlying ideology of cure. While rehabilitation is not curative, the manner in which it is presented in the aftermath of a catastrophic illness leads individuals to believe it will provide a cure (Becker and Kaufman, in press). Moreover, because rehabilitation was developed for young people, adapting it to fit the needs of older people is seldom done. The notion of functional independence has been created by rehabilitation specialists as a substitute for health. Rehabilitation specialists are trained to evaluate patients’

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losses and capabilities and teach patients how to compensate and substitute behaviors within the framework of observable, measurable activities of daily living. Rehabilitation mimics a curative process, and for this reason it engenders enthusiasm among patients who are eager to recover. Rehabilitation professionals cannot cure stroke patients by administering therapy (i.e., cannot reverse the neurological damage). The goal therefore becomes retraining for functional independence, but even this goal is frequently unobtainable. People who have had a stroke are not aware of the important distinction between neurological recovery and functional retraining; instead, they equate neurological recovery with hard work in rehabilitation (Becker and Kaufman, in press). As part of biomedicine, rehabilitation reflects a fundamental cultural belief, that individuals can exert the force of their will over the natural environment. Rehabilitation practitioners, like other health professionals, evaluate their own roles and judge patient behavior according to fundamental American values that stress personal autonomy in action and decision-making (Hsu 1972), mastery over disease (Kirmayer 1988), supremacy of technology, diligence, and perseverance (Sandelowski 1991; Tymstra 1989). Rehabilitation therapists attempt to cut through depression, awaken motivation, and enstill enthusiasm in patients for the rehabilitation process, reflecting American cultural values about the “fighting spirit” that is viewed as necessary for recovery from catastrophic illness to occur. Yet a recommendation that rehabilitation be instituted suggests that recovery from a given condition will not be automatic; that is, recovery will not occur without “work” by the patient. In the ideology of rehabilitation, success is ultimately attributed to the hard work, perseverance, motivation and endurance of the patient. In a study of rehabilitation decision-making, Kaufman and Becker (1986) found that practitioners perceive motivation to be the singlemost important factor in determining functional outcomes for older people who undergo rehabilitation. In the philosophy of rehabilitation, patients are expected to take responsibility for the therapeutic work, which they must then carry out (Kaufman and Becker 1986). They must want to recover. This perspective places the onus for recovery first and foremost on the patient. Moreover, motivation implies maintaining a positive attitude toward the recovery process, regardless of how slow, frustrating, and painful it might be, and in spite of the fact that residual disability may be severe. In a study of stroke patients and professional staff in a Canadian hospital, Hoffman (198 1) concluded that the importance ascribed to patient motivation also takes the pressure to “cure” patients off providers and transforms rehabilitation from a professional to a moral domain with negative ramifications for patients: if recovery in rehabilitation becomes a matter of individual perseverance, only patients are to blame if they do not recover or if recovery is incomplete. The rehabilitation of elderly people after a stroke occurs against this backdrop of patient responsibility for recovery.

Methods The findings reported in this article are part of a bigger study of the experience of having a stroke and the process of life reorganization that is triggered by its aftermath. The data are drawn from two related investigations (1983-1986 and 1988-1991): (1) patterns of rehabilitation among 102 people over the age of 45 who had a stroke, and (2) patterns of life course reorganization among 114 stroke survivors over the age of

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50. People in both studies were recruited in the same acute care hospital which specialized in geriatrics and had numerous medical-surgical units and one rehabilitation unit from which the study samples were drawn. Two methods of data collection were used: participant-observation and interviews. In order to “get inside” the culture of rehabilitation, understand therapists’and stroke survivors’perspectives, and to maintain rapport with hospital staff, participant-observation of hospital rehabilitation wards and patient-practitioner interaction took place over a five-year period. The intensive participant-observation data provided a necessary background to the primary task of the project: interviewing people who had had a stroke, of whom 100 were ultimately able to be interviewed three times over the course of a year following the stroke. The data reported in this article come primarily from field notes based on participantobservation. During the first year of the study, participant-observation of the rehabilitation unit was conducted on a daily basis, including weekly attendance at rehabilitation rounds and daily observation of patients receiving therapy and interacting with therapists and other staff. In subsequent phases of the research these practices were continued, but less intensively. By the time the study drew to a close, some rehabilitation regulations had changed but the dynamics at work on this unit did not.’ The author’s field notes, from which examples are drawn, were taken in shorthand during or shortly after each encounter on the unit or were dictated immediately following observations and later transcribed. Approximately 1,000 single-spaced pages of field notes were transcribed, half of which were reports of rehabilitation rounds; the other half reported on observations of individual rehabilitation therapy sessions. Field notes based on participant-observation of rehabilitation units were analyzed for core categories that emerged in each specific context, such as therapy sessions or rehabilitation rounds. Sub-categorization of dominant categories was then developed, for example, variations in palliative treatment. Linkages with other sub-categories were explored, and interview texts were analyzed for the appearance of these categories and their consistency across individual cases. Demographic characteristics of the 216 cases from the two studies are as follows: there were 133 women (62%) and 83 men (38%). Ethnically, the overall sample was composed of 129 whites (600/c), 55 African-Americans (25%), and 33 persons from other ethnic groups (15%) including Chinese, Filipino, and Hispanic. Age ranged from 45 to 105, with 140 persons (65%) in their seventies and eighties. Seventy-four persons (34%) were married at the time of the stroke; 176 (81%) had two or more other chronic conditions at the time of the stroke. During the study the investigators were aware of rehabilitation therapists’ tendency to differentiate between people considered to be rehabilitation candidates and those who were not (Becker and Kaufman 1986) but the pervasiveness and depth of these constructs remained unclear until the data were revisited.

THE DILEMMA: REHABILITATION

OR GERIATRIC CARE?

The rehabilitation staff espoused a philosophy of geriatric rehabilitation that was consistent with the geriatric emphasis of the acute care setting in which they worked. They were dedicated to geriatric rehabilitation and emphasized the importance of returning patients to their former lives in the community. Their primary goal for patients

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echoed their patients’ goals for themselves, to return home, and, insofar as possible, carry on with their lives. Therapists were frustrated in their efforts, however, by institutionalized age bias and policies both within and outside of their hospital. Ageist attitudes and policies shaped gate-keeping activities in local rehabilitation hospitals, undermined morale within the acute care setting, and affected attitudes towards patients and other health professionals in specific ways. First, policies in other rehabilitation facilities affected acute care rehabilitation staffs definitions of who had rehabilitation potential. Second, staff viewed other health professionals in the acute care setting as using their unit as a “dumping ground.” This dual dilemma accentuated the disparity between the “classic” practice of rehabilitation and rehabilitation as it was practiced with impaired older people in an acute care setting, resulting in the categorization of stroke survivors into “rehabilitation candidates” or recipients of “geriatric care.” Moreover, this dilemma raised issues of professional identity: questions arose about the nature of therapists’ work with their patients and their true purpose as rehabilitation specialists when they provided rehabilitation to patients who were thought to be unsuited to it or only able to participate in rehabilitation in a limited way. These issues created an ongoing “identity crisis” for staff because they felt caught between their professional standards for rehabilitation and their personal commitment to an elusive goal: the return of impaired, older patients to daily life. This dilemma confounded patients’ efforts to recover and go on with their lives. A three-part process is described: (a) the split rehabilitation therapists perceived between providing rehabilitation versus giving geriatric care; (b) the differential treatment of patients categorized as rehabilitation candidates or geriatric care, and (c) patients’ response to treatment.

Rehabilitation Versus Geriatric Care The goal of geriatric rehabilitation specialists in this study was to restore or maximize function and enable older patients to return to their previous lives. They perceived their philosophy of geriatric rehabilitation as being thwarted by rehabilitation hospitals in the same geographic area. Although these facilities were viewed as the local “gold standard” for rehabilitation, they exhibited an age bias and seldom accepted persons over the age of 65-70 for rehabilitation. Despite staffs awareness of this bias, they sometimes attempted to refer carefully selected patients whom they considered to be good rehabilitation candidates to these facilities for further rehabilitation, but even those patients who were carefully hand-picked were seldom accepted. For example, a therapist reported at rehabilitation rounds, “They didn’t take Mrs. Smith, so we have to decide if we should try to get her into our second choice, or should we send her home with home care and hope for the best?“The rejection of patients whom staff viewed as meeting criteria for extensive rehabilitation created an ongoing dilemma in which rehabilitation staff repeatedly saw their efforts to make additional therapy available to their elderly patients undermined and devalued by their peers in other health care settings. A second dilemma arose from within the acute care setting itself: that of providing rehabilitation for patients identified as in need of overall geriatric care. Rehabilitation specialists had been trained to restore function, and they were always looking for people they considered to be good rehabilitation candidates. A clear dichotomy emerged: with few exceptions, younger people were viewed as rehabilitation candidates, while older

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people were seen as being in need of “babysitting.‘~ People whose strokes were mild or moderate were favored as recipients of rehabilitation. Patients categorized as rehabilitation candidates were thought to have good recovery potential, including the potential to meet practitioners’ rehabilitation goals. Recovery potential (discussed in detail in Kaufman and Becker 1986) was calculated by rehabilitation therapists by evaluating and comparing five components: severity of the stroke (observed in patients’functional ability), level of cognitive impairment, overall state of health, ability of patients to physically and emotionally tolerate an intensive therapy program (two or more therapies, twice a day each), and age. The more negative attributes a patient possessed, the less likely staff members were to place the patient in a situation where there were intensive rehabilitation therapies. Practitioners believed the older the patient, the more likely he or she would be to have had a severe stroke, cognitive deficits, multiple health problems, and lack of physical and emotional endurance to withstand intensive therapies. Younger people (50’s to early 70’s) were especially favored because their overall health and stamina were viewed as greater than that of older people (late 70’s_90’s). Rehabilitation therapists contrasted the need to work with geriatric care patients with the purpose of their professional roles: to provide aggressive therapy for persons they viewed as rehabilitation candidates. They expected these patients to eventually return to greater levels of self care than patients they viewed as geriatric care patients. In contrast to practitioners’ assumptions about age, analysis of the sample of stroke patients indicated that, while age was associated with severity of the stroke and ability to tolerate an intensive therapy program, age alone was not associated with patients’ overall state of health, which was measured by counting each patient’s other medical conditions at the time of the stroke. The mean age of patients with l-4 other medical problems at the time of the stroke was 74.7 (72 patients) and the mean age of patients with no other medical problems the mean age was 74.3 (30 patients). Nor was age found to be associated with level of cognitive impairment when patients were divided into three groups: severely impaired, somewhat impaired, or unimpaired (Becker and Kaufman 1986). Views of who was a good rehabilitation candidate were influenced by institutional constraints. The hospital was perennially full of very ill, aged patients, and consequently, those patients who were considered to have rehabilitation potential (younger people with few other health problems) appeared to them to be seldom seen on this rehabilitation unit. While therapists believed in rehabilitation for frail older people, they saw many patients whom they believed were too ill to benefit from rehabilitation. They consequently experienced chronic feelings of futility about the value of their efforts. They wanted to maintain a balance between these two groups. They were committed to geriatric rehabilitation philosophically, but at the same time, work with persons who were considered rehabilitation candidates fulfilled their professional need to see rapid and consistent progress towards recovery. In the first study, from which the data reported here are drawn, data analysis revealed that slightly more than one-half, or 57 people, were considered good rehabilitation candidates by rehabilitation therapists. Of the remaining 45, 44 people were viewed by staff as having a low recovery potential (1 person died) (Becker and Kaufman 1986). The latter group were characterized by staff as persons in need of geriatric care.

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Although the data indicate that the unit did achieve a balance, the rehabilitation staff was not aware of it. Because they saw many patients that needed intensive geriatric care, staff viewed this ongoing effort to maintain a balance as a losing battle. During one year of attendance at weekly rehabilitation rounds, staff repeatedly complained about who was sent to the rehabilitation unit. For example, field notes from one rehabilitation rounds report: Rounds began with the head nurse coming in and announcing, “Please bear with nursing. We have lots of really sick people on the floor right now who need lots of care. We reahze we are behind and it is screwing up all the schedules for therapy, but there simply isn’t anything to be done about it right now. We’re doing our best.” And she left.

Staff complained that physicians sent their least desirable patients to rehabilitation for “babysitting,” and kept away patients who were believed to be medically stable and “worth saving.” Rehabilitation staff believed such patients would be more gratifying to work with, because they thought if they were able to initiate rehabilitation sooner, those patients would demonstrate greater strides in recovery. For example, a 65-yearold patient was admitted to the rehabilitation floor 12 hours after her husband brought her to the Emergency Room following a stroke. She was viewed by the staff as a rehabilitation candidate with great potential. The occupational therapist in charge of her rehabilitation was very excited about having this woman on the unit from the start of her hospitalization: they had not had this kind of patient for a long time and the therapist felt they badly needed one. She said with relish, “She’ll be here four or five weeks.” Whenever there was a particular dearth of persons viewed as rehabilitation candidates on the rehabilitation unit, staff morale plumetted. At the end of rehabilitation rounds, one week after field work began, field notes report that a nurse turned to the researchers and reported that they had a lot of people who were not improving, who were in a holding pattern. She said, “This is what is depressing right now. Everyone is at rock bottom. We are so swamped with critically ill people that we are putting aside what we’re supposed to be doing here.” The entire staff nodded. In previous encounters they had identified the unit as being in an identity crisis, in that it is technically a rehabilitation unit, but it is “not really” a rehabilitation unit. They do whatever is needed, for example, on this occasion many patients required total care and were critically ill, and there was really no hope for recovery for most of them.

This situation did not change, and, indeed, was viewed as a chronic problem by the staff during the subsequent year. At the end of rehabilitation rounds ten months later, the head of occupational therapy summarized the patients they had reviewed that morning: “We have onIy talked about one rehab candidate, and that was Mr. B.” The nursing coordinator agreed: “It’s as if we just happen to exist next to OT and PT [occupational and physical therapy].” The discharge planner concluded: “We should change the name of this floor to Intermediate Geriatric Care.”

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The dilemma of providing rehabilitation for patients identified as in need of overall geriatric care was not resolved on this unit during the year of the study during which daily participant-observation took place. Field notes at the end of rehabilitation rounds one year after attendance on the rehabilitation unit began, reported, At the end they all sat there in silence, and then a nurse said, “These are really sickies, this is a bad bunch.” And a rehabilitation therapist said, “God, I’m depressed after these meetings. Every Thursday morning it’s like this.” Since the census has been down, they have talked constantly about how inconsistent rehabilitation is with the chronic medical problems most of their patients have.

The dilemma between staffs professional commitment to geriatric rehabilitation interactions with patients occurred.

standards provided

for rehabilitation and their personal the backdrop against which their

The Differential Treatment of Patients Observations of practitioner-patient interactions in therapy sessions revealed that staff gave different types of encouragement and incentives to people they designated as rehabilitation candidates compared to people identified as geriatric care patients. Patients were identified as to their likely rehabilitation status soon after they were evaluated and appeared on the unit. Field notes of one rehabilitation rounds illustrate how differently the two types of patients were viewed. The first two persons described below were considered rehabilitation candidates, while the third person was not: Mrs. M, who is 84 years old and had a brain stem CVA [stroke], was described as “sits in a chair, is alert, cheerful, fed herself breakfast this morning. She suctions herself. She loves having a diaper because she can’t make it to the toilet fast enough. But if she is going home, she has to be independent.” The staff want her to become independent so she can go home. They discussed which rehabilitation facility might take her so that she could return home to live independently; they concluded their first choice wouldn’t take her because of her age and began discussing strategies for getting her into the facility that was their second choice.

Then they discussed Mr. W, an 88-year-old man. His only health problem stroke, and he was improving in every area of rehabilitation:

was the

The speech therapist said, “He is a neat man. I like him. We need more time on him [more rehabilitation hours].” They all agreed. The occupational therapist brought up the rehabilitation facility that was their second choice as a potential next step, and they began talking about this prospect with great excitement. One of the therapists concluded, “He is the best right hemi [right hemisphere stroke] 1 have ever seen.”

The third patient they reviewed was not viewed as a rehabilitation candidate: an 80year old woman who had lived alone prior to her stroke had arrived on the unit the previous day and was refusing to eat. The following interchange occurred, heavily laden with black humor:

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A nurse asked,‘% a depression process going on ?” to which a physical therapist responded, “She’s sick.” There was laughter all around the table at this, and the nurse responded seriously, “Yes, she’s a sick lady.” The occupational therapist volunteered, “She is tremendously depressed, We went to feed her and she pushed us away, she took 2 spoonfuls of puree and then she turned her face away.” The physical therapist, now serious, said, “It sounds like she needs calories,” to which the occupational therapist responded, “You know, she didn’t want to come to the hospital in the first place,” and the nurse interjected, “In just a few days her world

has crashed around her.” The speech therapist began her report: “She’s nonresponsive,” and someone said, “What does non-responsive mean? Does that mean she’s in a coma?” The response was, “No, it means she’s uncooperative. She doesn’t do anything. She looks at you. She is not comatose.“The nurse said, “I feel so sorry for her.” Another staff member said, “She’s quite happy when she’s sleeping.“There was a lot of laughter at this, to which a therapist responded, “Well you know my motto is ‘Kill them or cure them.’ Let’s get her on her feet or let her go.” When staff was providing therapy to someone they identified as a good rehabilitation candidate, their goals were different than for an individual considered to be a geriatric care patient. For example, in discussing a good rehabilitation candidate, an occupational therapist said, “She’s so good-you just hate to farm her out,” referring to the patient’s likely placement in a board and care home because of her difficulty walking. In contrast, patients viewed as geriatric care candidates were subject to ~fantilization and the removal of adult status. Bathing, toileting, and personal grooming were central aspects of rehabilitation in which staff worked hard to motivate patients considered to be rehabilitation candidates, but persons viewed as geriatric care received a different message when they were treated as children. For example, a nurse, finishing giving a bath to a feisty but good humored, tobacco-chewing 80-year-old woman, said to her, “I had to get rid of that odor. Now you’re as sweet as a baby, You look like a grownup woman.” The activity of eating was the most important of all. Eating symbolized for staff the value of living-if people did not eat, they would die. The ethics of rehabilitation, and of medicine, in general, prohibited therapists from allowing patients to refuse food. For example, one patient said, “I don’t want to eat. I want to die.” The therapist responded, “Mrs. K, if God was going to take you, he would have done it 2 weeks ago. Come on and eat some more food” (talking as she placed a spoonful of food in the patient’s mouth). American values inherent in rehabilitation were spelled out differently to geriatric care patients and rehabilitation candidates in therapy sessions, as well. Therapists conveyed to all patients their view that it was the patient’s responsibility to recover, but the way they conveyed that expectation differed. While rehabilitation candidates were given support and encouragement, expectations that patients adhere to values of hard work and perseverance were often conveyed as veiled threats to individuals viewed as geriatric care candidates. The frustration staff experienced in dealing with patients they did not consider to be appropriate for rehabilitation dominated their days and affected the way they interacted with these patients. For example, notes from a therapy session in the room of a patient identified as geriatric care report:

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After half an hour working with a patient who appeared to be extremely depressed, an occupational therapist said to her, “You’re so sad today.” The patient started crying. The therapist said, under her breath, “Uh oh, that’s the trigger,” then making a renewed attempt to engage the patient, she said, “Sweetheart, we’re going to work with you. You’re going to be here a few weeks. And we’re going to do our best to get you back up to par. Then it will be up to you to fight back, okay?”

Not only does this example reflect how American values are embedded in the rehabilitation ethos, it demonstrates rehabilitation therapists’stance with respect to their patients. Rehabilitation therapists acknowledged patients’depression among themselves but acted on the premise that if rehabilitation interventions did not begin early, the patient would lose valuable time and potential gains might be unrecoverable. The importance of beginning rehabilitation at the first opportunity was furthered by federal guidelines for reimbursement. Rehabilitation therapists believed that only motivated patients could make progress in rehabilitation and thus achieve practitioners’ graduated goals. Practitioners stated that a motivated stroke patient is one who participates without resistance to therapy that is offered and takes responsibility for becoming as actively involved in his or her own self-care as possible. Moreover, practitioners stated that their goals were most readily achieved with patients who had a positive attitude towards the rehabilitation process, regardless of how slow or frustrating it was, and despite the fact that residual disability might be massive and cause much psychological distress. For example, the researcher visited a patient’s room with an occupationaf therapist who had categorized that patient as a geriatric care case: The occupational therapist walked in, and after greeting the patient, said, “I want to get you up and sitting in a chair.“’ The patient moaned, “Oh, no.” The therapist responded, “Yes, you should be up, sitting in a chair. It would be so good for you.” Mrs. W, the patient, did not want to. The therapist literally lifted her up until she was in a sitting position and swung her legs around on the side of the bed. This whole operation exhausted Mrs. W so much she looked as if she were going to fold over and collapse upon herself. The therapist held her there, bodily holding her up. Mrs. W probably weighs about 105 pounds. All the effort was on the therapist’s part. Mrs. W said, “That’s enough. I can’t do any more, Let me down.“The therapist questioned her as to what she meant: “You mean you want me to let you go back to bed?” and Mrs. W responded, “Yes, please let me go back to bed.” The therapist repeated that it wasn’t good for her, that she would feel better sitting in a chair, eating her lunch. At that, Mrs. W said, “I don’t care about eating.” The therapist responded, “You have to care about eating.” Mrs. W, looking exhausted, said, “Just leave me alone, let me lie down.“Finally, the therapist did as she asked. As we walked out of the room, the therapist said, “The problem we have right now is we have so many patients like her. That’s why I get so excited when I have a patient like A [a rehab candidate].”

Staff were engaged in daily efforts at “impression management,” a term coined by Goffman (I959), which involved continual attempts to reduce the visibility of those persons rehabilitation therapists decided were geriatric care patients. Staff made these

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efforts on their own behalf as well as for the benefit of less impaired patients. For example, part of the daily routine was a lunch group, in which all patients willing to attend were brought to a large room where they lunched together with assistance from occupational therapists who were teaching them how to eat again. Field note observations of a typical day at lunch group report: The head occupational therapist told her assistant, “Put the more gomer ones on this table and the less gomer ones at that table.” He brought in Mrs. T who constantly smacks her mouth, others find her disturbing to watch. He put her across from Mrs. C and his supervisor said, “No, No. I want the more gomer ones over there. Put her down at the other end of the table out of the line of vision. It makes a big difference visually. It affects people.” While she was saying this, Mrs. C started to look more depressed [to the researcher] than she had a few minutes earlier.

Response of Patients Patients’ response to the rehabilitation setting and the staff depended on a variety of factors, including the nature of their impairments, the extent of their depression, their expectations for the future, and their interactions with rehabilitation therapists. A difference was observed between the kinds of explanations about recovery rehabilitation candidates received versus those given to geriatric care patients, explanations that affected patients’ response to rehabilitation. People who had had a stroke focused their energies on going home and on recovery, yet the tasks they were asked to carry out often made no sense to them without explanation. Rehabilitation therapists often gave geriatric care patients a task and told them to do it, without explaining what might be a~omplished; consequently, people often reacted poorly to the lack of explanation for tasks they were given to do. Sometimes these tasks were associated with early childhood, tasks that were insulting or demeaning for competent adults to undertake. For example, field notes reported the following observations of a 79-year-old woman in occupational therapy whom the staff considered to be a geriatric care patient: The therapist commented in front of the patient that the patient doesn’t like to do things like buttoning a button on the flat piece of wood they give patients. She said, “Mrs. J thinks it is silly,‘” and she emphasized the word, “silly.” Mrs. J nodded, and said, “Yes.” The therapist nevertheless tried to get Mrs. J to work on a board with buttons and zippers. Mrs. J looked at it dubiously. The therapist persevered, and the patient reluctantly worked on it for a while, then threw it across the room. Looking disgusted, she said, “Stupid, stupid, stupid,” and folded her arms resolutely. The therapist then gave her some scissors and material to cut. Mrs. J apparently did not think this task was silly; she addressed it diligently and completed the task without a mistake. The therapist later reported her surprise that the patient was able to do this task.

Therapists viewed such responses as affirmation that persons identified as geriatric care responded poorly to rehabilitation, but even rehabilitation candidates reacted adversely when they were asked to do tasks without explanation. For example, in

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occupational therapy a rehabilitation candidate was handed a toy-like object with red and yellow beads on it and told to turn these over repeatedly. The therapist then walked away without further explanation. Reluctantly embarking on this task, the patient turned to the researcher and commented, “I feel like I’m in Napa [a state mental institution].” Rehabilitation candidates were usually given explanations, however, such as how an arm, hand, or leg would be strengthened by performing a certain task. The excitement staff demonstrated when they worked with rehabilitation candidates and how they responded to them was invariably apparent, as indicated in this observation of physical therapy with a 61-year-old woman: The physical therapist got her down from the tilt table and did range of motion exercises with her weak arm and leg. The therapist kept saying, “Good, you’re doing much better today,” calling her by her first name. “M, move your arm, M, bend your elbow.”

When patients received positive feedback from health professionals,

they blossomed:

M, the patient, now in a good frame of mind after such positive acclaim, began to talk about how she loved clothes and jewelry and described an expensive suit she had bought shortly before she had the stroke. This is the first time M has talked willingly about her past appearance. Then she began to talk about the work she had done and the executive position she had held prior to the stroke, another first. [Prior to this occasion], M has steadfastly refused to discuss the past and would break into tears if others introduced the past into a conversation.

When staff did have a patient they judged to be a good rehabilitation candidate, they would go to lengths on that person’s behalf. For example, in a discussion between a physical therapist and a patient, the therapist said to the patient, “You are making such good progress, I don’t want you to lose anything. I want to keep you on here for two more weeks.“The patient responded, “Can you do that?“The therapist laughed, and said, “Sure, 1 can fudge the papers.” The patient was concerned: “Is that really okay?“The therapist responded, “As long as you are making progress I have no trouble documenting it, and you are definitely making progress.” This seemingly innocuous interchange reflects one of the disparities of the rehabilitation system that has far-reaching political and economic repercussions. Rehabilitation therapists, in carrying out the ideology of rehabilitation, take recourse in rehabilitation’s underlying ethos of motivation and productivity to justify maximum delivery of rehabilitation services to people who strive to fulfill those goals. People who receive these “extra” services have invariably been designated as rehabilitation candidates. Therapists’ reports of rehabilitation candidates progress in hospital charts are likely to be highly enthusiastic, and consequently those patients receive more rehabilitation as a result of their efforts, an aspect of this system that benefits those patients. Therapists’ notes on geriatric care patients may present a very different picture, however, one with negative repercussions for discharge assignments and rehabilitation services. Rehabilitation therapists and people designated as rehabilitation candidates frequently developed close working relationships. Because of the overall positive input

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rehabilitation candidiates received from therapists, a side-benefit was to soften bad news. For example, an occupational therapist said to Mrs. J, a rehabilitation candidate, “That arm is not going to be the way it was,” but Mrs. J was quite matter of fact. to sustain a sense of She said, “Oh, I knew that a long time ago.” Attempting hopefulness, the therapist initiated an exercise and continued talking: “My goals for you are to get that arm so its loose and you’re free of pain.“This therapist was practicing the philosophy of substitution. Having taken away any vestiges of hope for the arm to return to “normal,” she replaced any residual expectations with a new goal: being free of pain. In doing so, she substituted old goals with new ones, which were then reinforced in subsequent interactions. In contrast, persons who were designated as geriatric care patients appeared to experience a continual withdrawal of hope without redirection to other goals. For example, a rehabilitation nurse commented on the case of Mr. H, a former used car salesman who had a severe stroke: “The first day he went into OT [occupational therapy], they told him he would never drive again, just like that. That was a terrible blow. It’s the way to wipe somebody out.” But even rehabilitation candidates had their control over their lives repeatedly taken away. For example, Mrs. S was supposed to go to exercise class, an event about which she anticipated with excitement because she viewed it as a milestone of progress. At the last minute, however, her participation was cancelled by a rehabilitation therapist. When later asked by the interviewer why she had not been able to go, she responded despondently, “They told me, ‘You are not ambulatory.“’ Angrily, she concluded, “So I can’t go.” No matter how they were categorized, people in this study were torn between resistance and efforts to please rehabilitation therapists and comply with their efforts. Patients were in a position of powerlessness. Not only were they helpless following the stroke, therapists held the key to recovery. One man who was viewed as a rehabilitation candidate demonstrated this belief in addressing his therapists collectively one day when they were all present at the same time: “I’m trying real hard. I want you girls to like me.”

REHABILITATION AND INSTITUTIONALIZED AGEISM Widespread negative attitudes about aging in the United States affect assumptions about the rehabilitation of those who are old and extend to illnesses that are associated with old age, such as stroke. These cultural attitudes about old age are embedded in biomedical ideologies and inform the practice of health professionals. As a condition that exemplifies such attitudes, stroke reflects ageism that has been institutionalized in the rehabilitation system’s rules and regulations about progress in rehabilitation and perpetuated in the everyday, hands-on practice of rehabilitation with those who are old. These practices are reflected in the differentiation of older people into those who are viewed as rehabilitation candidates and those who are not. Infirm elders who are viewed as geriatric care patients are devalued and seen as neither productive nor “worth” the expense and resources rehabilitation represents. Professional rehabilitation perspectives about the purpose of rehabilitation therapy may lead therapists to experience a perpetual sense of frustration in certain work settings, such as those in which large numbers of aged, infirm patients are treated. On

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the rehabilitation unit described in this article, two competing versions of the purpose of rehabilitation took their toil on staff. In this acute care setting, the category of rehabilitation candidate, as defined by their criteria, was unrealistic for many patients. Staff sought in vain to maintain this category as the standard for rehabilitation, although they espoused in principle the value of providing rehabilitation therapy to impaired elders. The need to care for large numbers of infirm patients left little room for their goals to be realized, however. Because those goals were perenially thwarted, their frustration manifested itself in encounters with patients, in which they expressed their frustration through statements such as “We’re putting aside what we’re supposed to be doing here” and “This is a bunch of sickies, a bad bunch.” From the perspective of rehabilitation therapists, their actions and explanations to patients reflected a particular form of cultural logic (Luborsky and Sankar 1993). In their view, they were following a biomedical approach to patient care, in which cultural values about responsibility for oneself, self-reliance, and perseverence were expected to dominate and inform patients’ actions and efforts to recover (Kirmayer 1988). When stroke survivors did not demonstrate adherence to these beliefs, their status changed: they were treated as children who could not make decisions and who were not given choices or explanations. These actions became routinized in rehabilitation therapists’ interactions with persons they had categorized as geriatric care patients. Reduction of elders’status to that of children has been observed in other areas of geriatric care (Becker 1993; Kaufman 1994; Kayser-Jones 1981) reflecting the pervasive problem of devalued status of those who are old (Becker 1980; Clark and Anderson 1967; Neugarten and Hagestad 1977). Negative cultural attitudes about aging have combined with biomedical ideologies and economic constraints in the delivery of health care to obscure the value of rehabilitation for older people. Policy guidelines for stroke rehabilitation reflect more about economic policies than they do about clinical observations about stroke. While policies are tailored to individuals insofar as progress is measured individually, such policies are primarily intended to limit the use of federal and private insurance resources. Despite efforts to screen effectively for rehabilitation candidates and institute other efficiencies, LaBan et al. (1992) report they failed to meet the Health Care Finance Administration’s recommendations on their rehabilitation unit. They observe that while the guidelines may be appropriate for patients who have mild or minor impairments, patients who need more treatment and recovery time are lost to rehabilitation. They conclude that this process is compounded by an increasingly aging population with significant multiple illnesses, limited economic resources, and limited family support. Moreover, discharge under such This research supports those conclusions. circumstances may trigger a sense of failure and defeat among elders who may interpret discharge as others’ loss of hope for their potential to recover (Becker and Kaufman, in press). Changing rehabilitation reimbursement guidelines would undermine this subtle yet pervasive form of ageism. Under existing guidelines, the great variability in the health of older people is overlooked. While regulations such as those currently in effect have been devised to maintain cost-effectiveness, they also serve a gate-keeping function, to prevent older people from receiving rehabilitation therapy that is deemed by others to be a waste of time, money, and effort. While more people may receive rehabilitation

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through home care services than was formerly the case, they may receive much less rehabilitation, overall, than people who receive extensive inpatient rehabilitation followed by home care rehabilitation, while those who are categorized as geriatric care patients may receive no rehabilitation whatsoever (Becker and Kaufman 1988; Kaufman and Becker 1991). The existing structure of health care financing needs to be reevaluated with respect to the rehabilitation of older people. The entire basis for providing rehabilitation needs to be rethought, from re-evaluation of the purposes of rehabilitation when applied to older persons, to ways of more appropriately tailoring rehabilitation for those who have limited stamina and resources. Current policies pertaining to rehabilitation are exclusionary and facilitate an all-or-none approach. Moreover, they foster age discrimination. Rather than perpetuating exclusionary policies, as in the current system, guidelines for rehabilitation could acknowledge the widely varying potential of elders to participate in rehabilitation by developing tracks of varying intensities. A more flexible policy that acknowledges variations in stamina through a range of rehabilitation tracks is needed. Such a policy would enable rehabilitation treatment to be tailored to independent need and focus on small incremental gains that would be more realistic for an aged population. Doing so would make it possible to tailor rehabilitation regimens to meet individual needs. Such a policy may also be more cost effective because it may enable greater numbers of people to return to higher levels of independent functioning. Whether ongoing rehabilitation may provide important social and emotional benefits in old age regardless of neurological and functional gains is a question that should be considered in the implementation of policy guidelines. Under optimal circumstances, the provision of rehabilitation may contribute to sense of well being late in life (Becker and Kaufman 1988; Binstock 1986). The categorization of older persons as geriatric care may have a deleterious effect on well being. While the provision of rehabilitation may serve as a testament to older individuals that there is hope for recovery, its withdrawal under adverse circumstances may be interpreted as an indicator that no recovery can or will occur. In conclusion, rehabilitation policies pose a threat to adult status for the majority of older people. Rather than expect all older people who are considered for rehabilitation to conform to rehabilitation’s ideology, rehabilitation could be of greater value to potential recipients if policy were rewritten to tailor rehabilitation more specifically to different endurance levels. Moreover, if rehabilitation policy made room for people to grieve their losses and allowed them to adapt to changes in health, those policies would influence the practice of rehabilitation. Because policies may inform practice @cheer and Luborsky 1991; Luborsky 1993b), the usefulness of rehabilitation would be greatly enhanced by changes in policy guidelines which might then foster the presentation of rehabilitation to potential recipients as a choice and an adult activity. Such policy shifts could lead to greater levels of independence in self-care. As part of the system of chronic care, rehabilitation has great potential to enhance the health of older people. But, as currently practiced, the potential for rehabilitation to have value for those who are old remains largely unrealized.

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This research was supported by National Institute on Aging research grant #AG04053. The author was Principal Investigator during the first of two three-year periods. The author wishes to thank Sharon Kaufman, Principal Investigator during the second threeyear period of funding, for her comments on this article. This article was developed while the author was supported by National Institute on Aging grant #AG09176. ACKNOWLEDGMENTS

NOTE 1. In discussions with Norman Fineman who is currently conducting anthropological research on the same rehabilitation unit, the dynamics of this rehabilitation unit appear to have remained the same.

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