the ability of spouse or other kin to continue home care - or supervision of care, when kin .... medical people call treatment and plans or programs' (Corbin and Strauss ..... decreasing number of home caregivers, as women have entered the job.
Carolyn L. Wiener and Jeanie Kayser-Jones The uneasy fate of nursing home residents: an organisational-interaction perspective
Abstract This paper examines the macrosociological and organisational conditions which impinge on those who are most directly involved in decisions about nursing home patients: kin, physicians and nursing staff. Focus is on the organisationalinteraction interplay, through use of an 'illness trajectory' framework. This analysis sheds light on the differing effect of external and internal conditions on members of each group and on the work they are called upon to do in the care of nursing home patients. All of the actors are caught in a downward spiral: under the impact ofthe conditions described in this paper, kin, physicians and nursing staff come to accept their poweriessness to affect change; gradual diminution of expectations ensues, leading to an acceptance of a lower standard of care. This, in turn, has serious implications when patients develop an acute illness.
Introduction
Most patients arrive unexpectedly at nursing homes in the United States after an acute phase of their chronic illness (or illnesses). Usually, while the acute phase has precipitated hospitalisation, a combination of factors stemming from deterioration of physical and/or mental status has decreased the ability of spouse or other kin to continue home care - or supervision of care, when kin and patient live apart. Hospitalisation was the turning point which led to nursing home placement. Yet, paradoxically, despite the fact that residents of nursing homes can be expected to experience exacerbations of their chronic illnesses and/or to develop acute illnesses, little attention is paid to planning for these contingencies. On the contrary, when an acute episode occurs, action veers toward the expedient, whatever will solve the problem most easily. Although fateful decisions are being made, decision making does not follow a rational pattern, as suggested by medical decision-making theory (Weinstein and Fineberg 1980, LaValle 1978,
Sociology of Health & Illness Vol. 12 No. 1 1990 0141-9889
The uneasy fate of nursing home residents 85 McNeal et al 1975), but rather is a subtle and complex process, affected by the organisation's 'ecology of knowledge' and the particular circumstances of the work (Anspach 1987). This paper examines the macrosociological and organisational conditions which impinge upon those who are most keenly involved in decisions about nursing home patients: kin, physicians and nursing staff. We analyse the differing impact of these conditions on members of each group and on the work they do. All of the actors are caught in a downward spiral expressed in the substantive theory of this paper: under the impact of macrosociological and organisational conditions, actors involved in the care of nursing home residents come to accept their powerlessness to affect change, and a gradual diminution of expectations ensues which leads to their acceptance of a lower standard of care. This then has implications for the decisions they make when residents are faced with acute illness episodes in their chronic illness trajectories. The glaring absence from this discussion of one group of key actors - the residents - requires explanation. This paper explores the effect of being worn down on those who are called ujran to make decisions when an acute episode occurs. Despite the efforts of advocates for 'advanced directives" and for patient participation in medical decision-making, these worthy goals are not as yet common practice. Eighty-eight per cent of the residents interviewed in this study reported that they had never discussed how much or how little they would want done if they should get sick. Furthermore, not only do decisions regarding treatment commonly wait upon a crisis, but a number of physicians in this study agreed with the doctor who admitted, 'I prefer to wait to discuss treatment options until the patient is not in shape since it's easier to talk to the family. It is the family the doctor has to deal with after death.' Thus, our de-emphasis on residents is based upon the situation as it is, not as it should be.
Source ofdate Data presented here are from an investigation of the social-cultural factors and other circumstances that influence the process of decision-making in the evaluation and treatment of acute illnesses in nursing homes. The research was conducted over a period of three years (1985-1988) in three American nursing homes: a 1,200 bed government-owned facility and two proprietary nursing homes (one with 135 beds and the other with 182 beds). Data reported here are from the proprietary homes only. In these homes, which are operated under private commercial licences but are subject to state regulations, some residents remain under the care of their private physicians. Those who do not have a private physician and patients who are admitted from the Veterans Administration are cared for by the
86 Carolyn L. Wiener and Jeanie Kayser-Jones medical director. Residents whose health care is covered by a Health Maintenance Organization (HMO) are assigned a HMO physician. Data were collected by the authors and six research assistants (nursing, medical, and sociology students), two in each facility. Interviews with physicians, nursing staff (registered nurses, licensed vocational nurses, and nurse aides), nursing home residents, and family members (a minimum of 1(X) in each category) were used to gather data. In addition, participant observation was conducted during all hours of the day, seven days a week, in all three facilities. Observations focused on the diagnostic and therapeutic services available in each setting; the nature of physicianresident, physician-nurse, nurse-resident, and family-resident interaction; the attitudes, beliefs, and the behaviour of all who were involved in the decision-making process when an acute illness occurred; and, the nursing home milieu and its effect on decisions regarding the treatment of acute illness. Event analysis, an intensive study of a particular event, was the strategy used to study prospectively 215 acute illness episodes in the three settings. The goal of this phase of the research was to describe and analyse in detail the dynamics of the decision-making process when an elderly resident developed an acute illness. An acute-illness was defined as a state of ill health associated with specific signs and symptoms of recent onset.
Method The design of this study provided an opportunity to use multivariate techniques in 'mutually enhancing ways' (Mechanic 1989). Data collected on acute illness episodes, for instance, were computerised and tested quantitatively, using measures of association such as Pearson correlation coefficient to explore for strong relationships among variables. In addition, the framing of many of the questions and the size of the sample enabled us to code and analyse survey responses quantitatively. Ouestions pertaining to relatives' attitudes toward treatment, e.g. "if your relative became acutely ill, for example, developed pneumonia, would you want him/her treated?' or pertaining to physicians' criteria for treatment, e.g. 'does age (cost of treatment, mental status) influence your decision?' are examples of the type of data best handled quantitatively. (These data will be reported elsewhere.) Many questions, however, which gleaned quantitative data, e.g. one posed to physicians, 'do you discuss these issues (of treatment variables) with the patient and family?', were followed by questions which explored the nature of physician/patient-family interaction, and thus lent themselves to qualitative analysis. Since the aim of this paper is to analyse how organisational deficiencies affect, over time, the perceptions and attitudes of actors, our focus is on the qualitative data and on the organisational-interaction interplay. We have
The uneasy fate of nursing home residents 87 attempted to follow Lieberson's (1985) imploration that social scientists give more effort to understanding why phenomena exist in contrast to explaining variations in their occurrence. To this end, we coded interviews and fieldnotes obtained through participant observation. Oualitative analysis followed the grounded theory method, by which a well-integrated set of concepts is developed to provide a theoretical explanation of the phenomena under study (Glaser and Strauss 1967, Glaser 1978, Strauss 1987). All the stages of a research process are in operation throughout the life of the project: thinking, observing in the field, interviewing, notetaking, analysing, memo-writing. In grounded theory, concepts are the basic unit of analysis. It is representativeness of concepts (their dimensions and variations) not of numbers that is important. Being conceptual rather than descriptive, grounded theory does not necessarily require presentation of many quotations, especially the longer ones that some readers expect. The eventual aim is to produce theory which links interactions, strategies and consequences of behaviour with the structural conditions in which they operate. This is why we offer no percentage of people who spontaneously expressed complaints. Nonetheless, a considerable proportion made these complaints or their perceptions would not have emerged as salient. A risk inherent in using multivariate techniques is that qualitative analysis be judged in terms of quantitative canons. Grounded theory requires that the usual canons of 'good science' are retained. These include significance, theory-observation compatibility, generalisability, reproducibility, precision, rigor and verification (Gortner and Schultz 1988, 204). 'The danger that must be guarded against when using such terms is to avoid the more positivistic connotations usually associated with them' (Corbin and Strausf 1990). These terms are redefined by Corbin and Strauss in order to fit the complexities of the social phenomena the researcher is seeking to understand through the grounded theory method.
Theoretical framework
In line with the work of Everett Hughes (1971), some sociologists have employed the concept of 'illness career' to portray the continuum of health care (Goffman 1961, Davis 1963, Roth 1963, Speedling 1982; Blaxter 1976, Morgan 1982, Gustafson 1972). An expansion of this concept is the theoretical framework of 'illness trajectory,' a term borrowed from the physical sciences, used here as a metaphor. Clearly, the speed and direction of a missile being launched (i.e., its trajectory) can be modified in flight by the push and pull of extraneous forces. Similarly, the 'natural course' of a disease or its 'career' can be affected by the interplay of medical, social, political, economic, biographical and psychological forces as they bear on the work of managing the illness. Trajectory, then, refers not only to the physical unfolding of a disease, but to the total organisation of work done
88 Carolyn L. Wiener and Jeanie Kayser-Jones over the course of the disease - together with the impact that the consequences of the disease and its work exert on the lives of the people involved; patients, family and health professionals. Included also, in turn, are the reciprocal consequences of this interaction for the work itself. Stemming from the seminal work conducted in the 1960s, which examined the correlative effects of patient, staff and institutional structure on the management of terminal patients (Glaser and Strauss 1965^ Glaser and Strauss 1968), the concept of an illness trajectory was reformulated and enhanced through research among the chronically ill (Strauss et al 1984, Fagerhaugh and Strauss 1977). Subsequent research identifled the types of work which comprise contemporary health care - machine, clinical safety, comfort, sentimental, information - and shed light on 'patient work' and 'kin work' (Strauss etal 1985, Fagerhaugh etal 1987, Corbin and Strauss 1988). 'Illness trajectory' has, through these vehicles, come to refer to all of the related work in a course of an illness as well as the effect on the workers - with not only health professionals but patients and their families (in contradiction to the folk understanding of 'work') considered as workers. Included, as well, is the intertwining of the biographies of these workers that then further affects both the management of a course of illness as well as the fate of the person who is ill (Wiener et al 1979). The value of this theoretical framework is that it focuses on the social context for work as well as on the social relationships affecting the work. 'It captures aspects of the experiences of everyone involved in the management drama' and 'adds the aspect of fatefulness, of "undergoing and experiencing" (Dewey 1934) to what sociologists ordinarily call action schemes and medical people call treatment and plans or programs' (Corbin and Strauss 1988: 34). Macrosociological conditions Tacit to the substantive theory of this paper is the understanding that external constraints help to shape illness trajectories. As we shall suggest, the organisational conditions in nursing homes, which have a profound effect on the fate of residents and their families, are themselves influenced by larger macrosociological conditions: (1) an aging population which is growing at an exponential rate; (2) advances in medical technology which prolong life but do not cure disease; (3) the increased severity of illness found in nursing home residents as Medicare restrictions have shortened hospital stay; (4) a middle-aged 'sandwich' generation in which many women are no longer able to fulfill the traditional role of home caregiver to the elderly; (5) a Congress bent on deficit reduction and therefore not open to
The uneasy fate of nursing home residents 89 (6) (7) (8) (9) (10)
increased funding of nursing homes; a crisis in attracting nurses to the profession; a medical profession which is holding fast to its autonomy while trying to flt a fee-for-service medical system into the cumbersome government financing scheme; a hierarchy within the medical profession which places high value on technically skilled physicians and lesser value on those who deal directly with patients; a dearth of physicians who are sensitive to the special needs of the elderly; a market economy not given to national health insurance but supportive of a system of investor-owned nursing home corporations which tend to hire relatively unskilled labour, many of whom are recent immigrants.
Most of these constraints require massive national attention, discussion of which is beyond the scope of this paper. Therefore, the focus will be on the organisational conditions within the nursing home that affect patient care. Despite the severe impact of external conditions, for the most part they are not in the consciousness of the crucial actors within the nursing home scene. Interviews reveal that internal constraints, or organisational conditions, are more keenly experienced by family, physicians and staff. Nevertheless, since they affect each group and each groups' work differently, they are taken up separately here for purposes of clarity. Kin perceptions and kin work
Under current restrictions of Medicare (the federal health program for the elderly), the decision regarding nursing home placement is often thrust upon the family hastily during the patient's hospitalisation, when kin are notified that Medicare will no longer cover acute care. Notwithstanding the abundant literature on the subject (Kayser-Jones 1981, Mendelson 1974, Vladeck 1980, Bennett 1980, Johnson and Grant 1985, Gubrium 1975), and sporadic media attention, most families are ill-prepared for the conditions in nursing homes which only become evident to them after their relatives have been admitted. Grievances focused on: (1) the quality of nursing care. Kin complained of 'incompetent and inadequate help' and of rapid turnover of staff. Many family members felt that patients became incontinent because their requests to go to the bathroom were unheeded. Others focused on the slow response of nurses when patients and family called for help. Relatives considered administration's explanation of 'short staffing' to be 'an alibi' or 'an excuse for poor care and mistreatment of patients.' They expressed concern that patients were either kept in a chair or in bed too long, or placed in restraints because of short staffing.
90 Carolyn L. Wiener and Jeanie Kayser-Jones (2) the quality of food and feeding of residents. Relatives countered staffs claim regarding patients' lack of interest in food with accusations about its poor quality, and expressed their dissatisfaction with the way residents who are unable to feed themselves are left to fend for themselves at mealtime. Some kin felt nasogastric tubes were used because there was not enough staff to feed patients. (3) loss of property. A frequent source of irritation is the neutralisation of property, especially clothes, which occurs in nursing homes as aides dress residents who are unable to dress themselves, with little regard for ownership. Seeing their relatives' clothes on other residents, or vice versa, was repeatedly mentioned not so much for the material value as for the carelessness this symbolised. A number of relatives spoke of things 'disappearing', and made accusations of outright theft. One granddaughter wisely concluded, 'Theft undermines their hope. It morally debilitates them.' (4) the depressing environment. Residents in nursing homes are often restrained in wheelchairs, and placed somewhere in the hallway. There they remain until staff decide to move them. And there they are found by visiting relatives, who also see a lineup of similarly restrained residents. A common assessment of the nursing home was its depressing quality, for example: 'These are the living dead. They [staff] are the caretakers who wait for people to die. They do die fast. . . they sit and get bored to death.' (5) poor communication with physicians. The lack of communication with physicians was a recurrent complaint. An example of the bitterness this evokes is the assessment of a woman who said of her grandmother's doctor. 'He comes once a month only to see if she's dead or alive.' Some relatives excused the physician on the basis of conflicting demands, for instance, the son who observed of his mother's physician, 'He's one of those busy doctors and not the sort of person who would say, "Now let's sit down for fifteen minutes and talk about these things." He's always on the way out.' Others realised their doctors either lacked skills or were uninterested in geriatric medicine. (6) poor communication with staff. Since institutions cannot enforce an English-only policy, kin were markedly frank about their irritation with nurses' poor command of English. In one facility, aides were preponderantly young women from the Philippines, prompting responses such as: 'It would be a waste of time [to talk to nurses]. I have asked them to speak in English. I can't stand it when they talk in Tagalog [the common language of the Philippines] to each other.' Another respondent said, 'Sometimes you can understand what the nurses say; sometimes you can't.' It has been suggested (Dobrof and Litwak 1977, Smith and Bengston 1979, Montgomery 1982) that nursing home placement may improve family solidarity insofar as the institution's assumed responsibility for technical tasks allows the family to focus on psychosocial interaction with the resident and, further, that a clear demarcation between formal an
The uneasy fate of nursing home residents 91 informal tasks in long-term care is possible (Litwak 1985). Our research suggests a different picture, consistent with Bowers' findings (1988). Relatives who thought they had turned their kin work over to professionals were disappointed to flnd they were still doing it but under the constrained conditions described above. Although occasionally mentioning a positive aspect, such as uninterrupted sleep, most respondents reported: feeding relatives; bringing special foods; changing bedding when, for instance, they find the dislodged feeding tube or catheter has soiled the linen; checking for bed sores; supervising medication; keeping their relative well groomed. In some of the tasks - most often, getting clean linen and supervising medications - doing kin work entailed negotiating boundaries with staff and became a continual battle. In addition, the need to do sentimental work (provide emotional supp>ort) was now increased by the residents' sadness and displeasure with institutionalisation. Relatives reacted to their gradually depleted confidence in staff by employing various tactics of monitoring care. For some, it was record keeping in order to 'go to the administrator one of these days.' Some were restrained from complaining to administration out of intimidation, explaining, 'fear is not an uncommon factor here. If they want to, they can just tell you to move.' For some, a preferred tactic was to monitor resident care by coming at odd hours (2-3 a.m.) or by varying their visiting hours. Others made the daily visit a part of their routine. A daughter who admitted that 'many is the time I've had to force myself to get out of the car,' added, '1 come every day to keep them honest.' Some relatives were pushed to take matters into their own hands. One woman, unable to convince staff that her husband was sick, took his temperature with her own thermometer, and brought the evidence (a 101 degree fever) to the nurses' station. (Not only did the nurses let her know that they did not approve of her questioning their work but the medical director, after telling her that her husband had pneumonia, added 'You and your sister fret too much.') Most kin are not this courageous but do press for transfer to the acute hopsital when they feel insecure about their relative's treatment (Kayser-Jones, Wiener and Barbaccia 1989). As difficult as these conditions are to deal with, perhaps more insidious are those that remain unknown to kin despite the severe impact they exert on residents' illness trajectories. Paramount among these are the way nursing homes are perceived by physicians and the effect of these perceptions on physicians' work.
Physicians' perceptions and physicians' work
Some of the dimensions which make the care of nursing home patients disagreeable to physicians are well known within the health care arena, for example, the low prestige afforded geriatric care in contrast to the glamour
92 Carolyn L. Wiener and Jeanie Kayser-Jones of 'high tech medicine' and the dearth of rewards chronically ill patients hold for physicians who were trained to 'cure' disease. These dimensions are not, however, part of the relatives' frame of reference. Nor are others which emerged from the interviews with physicians: (1) Nursing home visits are inordinately unremunerative. Regulations require that the physician visit the patient every 30 days but the fee schedule is considerably lower than that charged to private patients for an office visit. If the patient requires a second visit during the month, the reimbursement rate is even lower. Reimbursement is also hamstrung by bureaucratic obstacles. As one physician joked, 'If I see a patient more than once a month, I have to have a notary public go with me.' (2) Nursing homes are perceived as physically abhorrent. A physician who had been a medical director said, 'I don't like the place in any way. It smells. I don't like anything I've ever seen in a nursing home.' Physicians referred to their required visits as 'a bother' and 'burdensome.' One remarked, '1 feel like a jailkeeper.' Asked how they would feel if they themselves had to go into a nursing home, typical answers were: 'I would regard it as a catastrophe' and i would take cyanide.' (3) Nursing homes are psychologically demoralising. Physicians observed: 'Every time they see you they say they want to go home; I feel ineffective;' 'there is nothing to do; I sign orders, repeat the silly progress note;' 'I go down the hallway and see all those little eyes like Pets Unlimited;' and, 'It is the worst day of the month for me.' (4) Visits are inconvenient. Physicians spoke of their lack of control over placement, which preferably would be close to their offices. However, placement is dependent on: (a) availability and (b) screening of patients by nursing homes (to be discussed below). (5) Nursing homes are deficient in support services. Physicians complained of their difficulty getting basic diagnostic information and treatment support. As one physician said, 'The level of nursing care is made to be lower. They can't start intravenous therapy, they can't give certain drugs that require a knowledgeable RN (Registered Nurse), such as antiarrhythmics.' (6) Visits present an unwelcome rehearsal of the impairments o/aging, especially mental impairment. Many physicians spoke openly of their fear of mental deterioration, echoing the wry observation of one gerontologist: 'Dementia is the intellectual's version of castration' (Gutmann 1987). Characteristic comments were: 'I could live with physical disability as long as my mind was functioning;' 'If I were that way 1 would choose not to be treated;' and, even more candid, 'Ageing and infirmity frighten me.' (7) Nursing homes are a lonely setting for decision-making. Physicians do not feel accountable to anyone important to their practice or reputation in nursing homes, as expressed in the following: 'There are not the number of doctors around to check on what is being done; there is no house staff; the level of nursing supervision is lower.' Yet, the absence of accountability has disadvantages. As one physician expressed his own discomfort
The uneasy fate of nursing home residents 93 regarding balancing the alternative of dehydration vs. the placing of a nasogastric tube, he suddenly said, 'You know we are really doing an awful lot of this by the seat of our pants. It would be awfully nice if we could have some discussion and come up with some decisions.' Some physicians manage, despite these obstacles, to go about their work in an attentive and conscientious manner. Others put off their required monthly visit; make it as short as legally possible; substitute a cursory reading of the patient's chart for direct contact with patients and/or family; are short-tempered with staff when interrupted by phone calls regarding a patient's change of status. The medical director of one facility, with 37 patients under his care, was observed spending 40 minutes (an average of 1.08 minutes per patient) in the building, causing a nurse to comment, 'It's like the doctors think old people have a contagious disease, so they don't put their hands on them.'
Nursing perceptions and staff work
If the physicians' dissatisfaction lies in the discomfort and inconvenience which makes their work with nursing home patients troublesome, the staffs demoralisation lies in their awareness of the barriers to getting the work done properly. It lies in the knowledge that they do not have the wherewithal to do what is being asked of them. One sympathetic physician correctly noted: 'they are understaffed, underfunded and overwhelmed.' Since most nursing homes seek to make a proflt, motivation at the corporate level is to keep costs and wages down. Nationally, Medicaid, the federally mandated but state administered health program for low income people, is the primary source of payment for 50.4 per cent of nursing home residents (Vital and Health Statistics 1989). MediCal, the California Medicaid program, reimbursed the proprietary homes in this study at the rate of $53.76 a day. As a one physician correctly commented, 'You can't even get a motel room for that.' Patients are in nursing homes by virtue of having reached a point in their chronic illness trajectories where they need partial or complete assistance in one or more of the following activities of daily living: bathing, toileting, eating, and transferring (e.g., from chair to bed). Many have urinary and/or bowel incontinence; mental impairment; multiple chronic illnesses, such as chronic heart failure and diabetes or Parkinson's disease and hypertension; respiratory, skin and nutrition problems - all of which call for diligent monitoring. In addition, the implementation of Medicare's prospective payment program has resulted in earlier hospital discharge than was previously the case and a shifting of patients to nursing homes. Yet, facilities which have KM) beds or more are only required to have a full-time Director of Nursing (DON) who is a registered nurse and one other licensed nurse in the building at all times. Most of the nursing care - including assessment of subtle changes in
94 Carolyn L. Wiener and Jeanie Kayser-Jones patients' physical and cognitive condition - is done by a small number of licensed vocational nurses (LVNs) but predominantly by nurse aides (NAs). With salaries for NAs close to the state and federal minimum wages, proprietary homes attract inadequately skilled workers (many of whom are recent immigrants) who are ill-equip]}ed to deal with the increased severity of illness found in today's nursing home patients. DONs reported having to develop their telephone-screening skills when called about new admissions. (Due to their own need to discharge patients in compliance with Medicare restrictions, hospital discharge planners sometimes minimise a patient's severity of illness.) Not only must the DON negotiate for patients whose illness is only moderately severe, she also must keep the staff level low enough to control costs while attempting to maintain all patients at a level of care that will satisfy the state inspectors (Wiener and Kayser-Jones 1989). Unlike hospital administrators, nursing home administrators were forbidden by the corporation to use registry nurses when faced with depleted staff shortages. The hard work for nurse administrators, then, consisted of juggling these demands while attempting to overlook those things that conflict with their previously developed standards for good nursing care. Take, for example, the comment made by one administrator: 'When I walk around now I just have to close my eyes. I see people sitting around without shoes and I cannot say anything about it because we do not have enough staff.' On the small number of RNs and LVNs who were charge nurses fell the responsibility of detailed record keeping to comply with government regulations; administration of drugs; assignment and supervision of nurse aides; phone calls to physicians, to report any change in a patient's condition; the writing of summaries on 20 to 30 patients a day. It is the charge nurse who is on the flring line, coping with limited resources. A nurse practitioner, recently hired as Assistant DON, expressed her astonishment at learning that: A patient with a tracheostomy, who should be suctioned every hour, is maybe suctioned once a shift. Even if we give antibiotics to patients with pneumonia, they might not recover because they will not be getting the right nursing care, for example, coughing, deep breathing, and turning. These things just aren't done here and they really work. The charge nurse also dealt with equipment that was often antiquated or in disrepair and with being the target for complaints from irritated physicians and f'rustrated families. Although grateful for the physicians who treat them kindly, nurses were nevertheless annoyed with the extent to which others 'rush you off. They're in and out so fast.' NAs, who comprise 80 to 90 per cent of all nursing home personnel (Institute of Medicine 1986) provided the majority of direct care for residents. Training for NAs was brief, sometimes nonexistent, and by
The uneasy fate of nursing home residents 95 admission of the supervising nurses 'inadequate.' NAs were dealing with their own dimensions of demoralisation. They reported feeling: (1) dispirited by the short staffing and by its unpredictability. Staff complained of having 14 patients one day and nine the next, saying, for example, 'there is no time to do the personal things' and 'every day I know what I am doing is not enough.' (2) denied any sense of working on a health team. One aide, with a six year employment record to her credit, asked the researcher, 'How would you feel if someone you cared about was sick and hungry, needed their hair combed, you tried to do something for them, and the nurse tells you, "that's not your patient?"' Asked about his feelings when a 'Do Not Resuscitate' order is placed on a patient, another aide answered, 'We as nurse aides don't know what is going on at the desk. We pass bed pans and give baths. In eight years I have never heard a discussion like that.' (3) restricted by the limited resources. Aides complained of not being able to get such simple needs as Vaseline and mineral oil, not having enough sheets and towels. They were concerned about medical deficiencies: 'Doctors are a fleeting shadow here; I sometimes wonder if they know who their patients are. They take their pulse, respiration and heart, and that's it.' The downward spiral
All three groups exhibit the consequences of a downward spiral: being oppressed by the conditions and the work. As relatives, physicians and staff become aware of their powerlessness to affect change, they experience a gradual diminishing of expectations and a gradual acceptance of a lower standard of care. Although this process as it affects each group will be dealt with separately below, it is the interaction among the actors that plays a role in shaping residents' illness trajectories. ('Process' is used here, not in the sense of linearity of stages but to denote change overtime.) Kin. Because relatives do not know how the institution operates and have limited knowledge of the perceptions of physicians and staff, their experience has added anguish. Although relieved of the daily physical and emotional stress of carrying out or overseeing home care, family members are left with the frustration of having lost control of what was already the uncertain state surrounding attending to a chronically ill relative. For many, any gains from nursing home placement are offset by increased mental work. Families now must cope with the same anxieties they faced at home (guilt, feelings of inadequacy, fatigue, loneliness) with the added perception that care for their relative is less than optimal. Interviews with relatives were replete with allusions to a gradual resignation: 'you build up a callousness'; 'I'm tired of fighting'; 'In the beginning, I would ask all
96 Carolyn L. Wiener and Jeanie Kayser-Jones kinds of questions. After they kept responding by saying, "We're following doctor's orders", I just stopped asking them.' In addition, the desired resolution of family tension remains elusive. Kin revealed that disagreement among family members regarding nursing home placement continued to create discord. A case in point is a 32 yearold son who was critical of his mother's inability to continue home care. The mother's angry retort to the researcher, 'He wasn't around; he doesn't know what it was like,' captured eleven years of caring for her husband through Parkinson's Disease and chronic heart failure. One niece, a nun, expressed resentment that she had had no control over her uncle's institutionalisation. She said of her visits, 'It keeps me tied in. I never let a week go by that I do not visit him.' Although assuring the investigator that this was not a burden and that it gives value to her life, she was nonetheless annoyed that the other nieces and nephews say, 'She's the nun; let her do the visiting.' One daughter, a nurse, talked of the extreme pain of her decision regarding nursing home placement. Neither of her two brothers had volunteered to be caretakers but they continued to ask her 'Are you sure that you can't take care of mother at home?' Further exacerbating the situation is the threat of financial insolvency. At the time of the research, private residents in the two proprietary facilities were paying between $25(H) and $4(XX) a month. Medicare reimbursed nursing homes at the rate of 80 per cent of the cost, for a maximum of KM) days per calendar year. Medicare coverage is confined to those who require skilled nursing care, as verified by the physician, under a limited time span and subject to review. The HMO which covered residents in this study follows the same formula as Medicare. The Veterans Administration reimburses the nursing home on a contract basis for six months. Thus, residents who were not covered by these programs or by Medicaid were 'spending down,' depleting their personal assets to reach the $1900 maximum required for Medicaid eligibility. Anxiety over the depletion of savings was prevalent. Respondents s[K)ke of forgoing heat in the house, of leaving one light on at a time, and of not using their cars. Finally, families are worn down by the gradual chipping away of their expectations. A stroke patient and her sister (who could no longer handle home care due to her own illness) were observed frequently by the researcher as they sat together and wept in frustration and as the relative talked about staf^f not putting fresh clothes on the resident daily; new clothes and underwear 'disappearing' overnight; the resident being put to bed at 4.30 for the convenience of staff. The relative said, 'The hardest thing I ever did in my life was to bring her here; I wish it were just a dream and that I'd wake up and it would all be over.' Asked how his mother's being in the nursing home had affected his life, one son responded, 'It's hell. I don't think words can express it exactly, the mental torture.' A daughter told of coming to visit every day while maintaining the care of her own family of four children, the youngest of whom is five. She said, 'It
The uneasy fate of nursing home residents 97 makes me sad, uncomfortable. It is a big responsibility. I cannot do anything for her. My personality is changing. I look at things differently. I knew people either died or got well, not that they just stayed.' Relatives know too well how limited their options are. In a few cases, the strain of institutionalisation outweighs any benefits, and they begin or resume home care. More often, this option has been permanently ruled out. Furthermore, no matter how dispirited they and the residents become, fear prevails that transfer to another facility 'could be worse' (to which one respondent added, 'although I don't know how it could be worse.') Physicians. While the effect of nursing home conditions and the work, as they touched each physician individually, emerged through retrospective accounts, there are parallels with kin's experience of diminished expectations and an acceptance of a lower standard of care. Typical of the characterisation of nursing home treatment is that given by one physician: 'The quality of care provided is appropriate in terms of the intention of that level of care. They are more likely to be treated in a cursory, inattentive way, to be neglected in a nursing home versus in acute care.' As to how this effects decision-making, another physician was candid: It tends to become less personal; it is institutional care, and I have an institutional approach. If I'm still with the family or know the person, that helps, but I withdraw emotionally. I'm less apt to be keenly interested. I'm more interested to see that the patient is comfortable, but I don't want to hear the mundane. Tiieir living in the nursing home is so limited, they are depressed. Even if they are senile, they know they are not at home. Yet another doctor characterised nursing homes as 'what your mother could do for you.' Physicians spoke candidly of their lack of confidence in staff, of language and cultural barriers, of the difficulties of telephone communication. Acceptance of the situation - hopelessness combined with powerlessness - is evident in a typical comment: 'the nurses are not as good, as well trained or competent but are adequate for what they need to do.' Despite the knowledge that 'nursing observation cannot be relied upon,' one physician added, 'most of the patients have been treated already by the time they get to the nursing home so the nurses are mainly seeing patients with chronic illness,' implying that chronically ill patients do not need the assessment and monitoring commonly accepted as requisite medical attention. Nursing Staff. Staff were also worn down by the conditions, their work and their unsatisfactory interaction with physicians. They spoke frequently of their frustration with the angry reaction they aroused when, as regulations require, they disturbed doctors to report by phone any change in the patient's condition. Participant observation revealed numerous instances
98 Carolyn L. Wiener and Jeanie Kayser-Jones of repeated phone calls, of being verbally abused, of calls being terminated abruptly and unceremoniously. NAs, especially, felt undervalued by physicians. Said one, 'I would never talk to the physicians. They think I don't know anything. They think I'm a nurse aide because I couldn't be a nurse and I resent that.' And from another: 'Behind our mind is always a feeling that our opinions do not matter.' They also expressed feelings of powerlessness. An aide explained his reticence in discussing the handling of a case with the nurses: 'They would react in a negative way. They would say, "who are we to tell them. We don't have a license, how can we judge?"' Some gradually accept these conditions but more often they seek employment elsewhere. While statistics on staff turnover were not made available to us, the average national turnover rate of nursing home personnel is between 55 and 75 per cent (Halbur and Fears 1986). Few nurses can tolerate the demoralisation and the dissonance between conditions in the nursing home and their standards. One proprietary home had four DONs and the other had three during the first year of data collection.
Relationship of the downward spiral to trajectory decisions
To be sure, macrosociological and organisational conditions are not completely deterministic. The reaction of individuals to conditions is highly variable and the conditions can be shaped. Families are not physically forced to place relatives in nursing homes, although they may feel emotionally constrained to do so; nurses do not have to work there; physicians do not have to accept nursing home residents as patients. Nevertheless, for those residents who remain in nursing homes, fateful trajectory decisions are being made by people who are worn down by the nursing home setting - its organisational conditions and the nature of the work. A clarification is in order: Our inclusion of kin as decision-makers should not be misinterpreted. Relatives are not routinely consulted for direction when a resident develops an acute illness. Kin are more likely to be called in during crisis situations, such as the placing of a nasogastric tube. Even then, the information is often relayed by phone and is less a discussion than the imparting of a medical decision. When elicited, however, it is clear that relatives' opinions about treatment become circumscribed as they observe the effect of institutionalisation on the residents. One woman explained why she would want no treatment for her mother: 'That would be a disservice. The quality of life is not optimum for anybody in this place . . . if you call this living.' Another said she would not want cardiopulmonary resuscitation (CPR) administered should her grandmother need it. She explained that
The uneasy fate of nursing home residents 99 her feelings were influenced by her grandmother's 'downhill course' since admission: 'she's lost weight, she's stooped, and her memory is worse.' Most significant, in light of the tendency in the United States to advocate patient/family involvement in decisions about health care, is that family decisions are being made in a vacuum. When seeking information, relatives frequently do not distinguish between aides, LVNs and RNs and often pick up information, potentially erroneous, by chance. Relatives' statements which appear contradictory are actually uninformed. When kin exhibit (as they did to the researchers) blind faith in the physician despite never having met him/her, when they said they would want CPR for their relative 'but no machines' (about which there can be no guarantee), they were simply reflecting the informational wasteland they were inhabiting. In the end, relatives, staff and physicians all look for clues in each other's behaviour, with resultant faulty reading. For example, one physician opined that problems over his decisions occur with 'those families who've never called to ask, "How is my mother doing? She seems to be losing weight."' Yet, relatives continued to assume that the physician was 'too busy' to be disturbed. The serious communication gap needs no better illustration than the number of respondents who said that being interviewed had given them courage to ask more questions. Residents in nursing homes are fragile; there is a greater need to monitor their physical and mental status. Boundaries between deteriorating and dying are blurred; comebacks from acute episodes can be brief. Families may have felt a mixture of emotions aggravated by institutionalisation, may have been realistic about prognosis, but they still expected that since 'this is a medical facility', the staff and physicians 'will do everything that needs to be done.' Yet, physicians and staff, worn down by the conditions and the work, tolerated the ad hoc nature of trajectory decisions. An assistant DON captured what is evident from our data: 'Nobody ever plans ahead; decisions are made purely on subjective feelings, purely opinions.' There is a glaring absence of the development of a treatment plan for longterm management and of a vital component of quality care: the integration of the nurses' knowledge, deliberation and judgement with that of the physician. Decisions are based inappropriately on an acute rather than a long-term model of care. The complexity of the resident's ongoing condition is seldom addressed. Nurses report symptoms to physicians in order to comply with regulations, too often eschewing responsibility for what happens subsequently. Physicians accept the telephone as the appropriate medium and the hospital emergency room as the convenient setting for diagnosis. Missing is the type of medical assessment required if a long-term treatment plan is to be integrated with daily care. Moreover, lacking prior direction from patients or kin, physicians quite naturally fall back upon a subjective judgement regarding quality of life when deciding on treatment of acute illnesses, on nasogastric tubes, on CPR. A common description was: 'My criteria always is what I would want in a similar state'
UK) Carolyn L. Wiener and Jeanie Kayser-Jones or 'what I would want for my mother/father.' The significance of this finding lies in its relationship to the strong value most physicians placed on their own mental acuity, when such a large percentage of patients in nursing homes suffer from varying degrees of mental impairment.
Discussion
As stated earlier, although macrosociological conditions impinge with great force on the illness trajectories of nursing home patients in the United States, it is beyond the scope of this paper to discuss the massive attention their correction would require. Nor does the national will to find solutions to this social problem appear evident. Nevertheless, in keeping with Mills' instruction that social scientists have not completed their intellectual journey unless they analyse the intersection between 'personal troubles' and 'social issues' (Mills 1959, 3-24), some discussion is in order. Nursing homes must be viewed in the context of health care in the United States, with is peculiar mix of private and public funding. Some macrosociological conditions, such as advances in medical technology which have prolonged life and thus increased the proportion of chronicallyill elderly, are being felt by all industrialised nations; similarly, the decreasing number of home caregivers, as women have entered the job market in greater numbers. However, other conditions, such as the high cost of health care amid a strained economy, are international in their urgency but American in their response. The United States is the only industrialised nation, except for South Africa, that does not cover as a right of citizenship the medical expenses of anyone who becomes seriously ill (Light 1989). Medicare and Medicaid, the programs that are available to selective populations, have historically been jeopardised by the threat of cut-backs while simultaneously much of organised medicine has struggled to maintain a private medical system. Length of hospitalisation has been successfully curtailed in the interest of cost effectiveness but this accomplishment was not balanced with either adequate long-term care resources or facilities in the interest of the chronically-ill elderly. Amid debate over the morality of prospective rationing of health care, only a few people have had the courage to admit that rationing is already a fact of life for the poor and the uninsured. On the plus side, there is a movement in Congress and in the medical profession to revise the reimbursement system to increase physicians' rewards for time spent advising patients and managing their illnesses. However, increased benefits for nursing home residents under the 1989 Medicare Catastrophic Insurance Act have been expunged in the dismantling of the legislation ten months after inception. A hopeful sign is that, at long last, some physicians are choosing geriatrics as a speciality. Nevertheless,
The uneasy fate of nursing home residents 101 attraction to this field is still hampered by existing disincentives. In the meantime, the nation is considerably short of its nursing needs. The number of programs offering nursing degrees as well as the number of admissions to remaining programs has steadily declined in the 1980s (National League for Nursing 1989). Nursing unions are attempting to ease the shortage by asking for higher wages. In a climate of high demand and low supply, nursing homes will be increasingly unsuccessful in attracting competent nursing staff. Furthermore, 340,550 of the nursing home beds in the United States are owned or managed by fifty-five investor owned chains (Wagner 1989), a system which encourages profit-accountability to corporate management and stockholders to take precedence over quality of care. (The two nursing homes discussed here are examples.) Despite efforts to assure a profit margin through providing inadequate resources and hiring inexperienced and underpaid nurse aides, the nursing home industry is experiencing financial problems which it blames on 'rising operating costs, primarily because of the labor shortage and regulatory constraints' {op. cit, p. 38). The one chain that maintained steady growth in 1988, did so because 50 per cent of its residents paid privately and even this profitable chain reported a 300 to 400 per cent average staff turnover {ibid). Finally, and perhaps most important, a national philosophy embraced during the Reagan years, and extending into the Bush administration, of leaving solutions to most social problems - whether environmental pollution, the homeless or health care to 'market forces' (or unspoken, to Social Darwinism) does little to improve these macrosociological conditions. Little wonder, then, that relatives, staff and physicians in nursing homes feel powerless. Short of the long overdue national attention to these conditions, the least that can be recommended is a mechanism for better communication among all who participate in trajectory decisions. Residents and kin would benefit from a conference with physician and nursing staff upon admission and then on a periodic and ongoing basis in order to locate where the resident is in his/her trajectory. A frank and patient discussion of the options (or sometimes, the lack of options) before crisis situations arise would allow kin the luxury of time to give careful thought to what they want for their relatives. Through family conferences, kin could learn what the doctor means by 'extraordinary measures,' 'basic hydration,' 'supportive care,' and could be encouraged to think through and then express their wishes regarding treatment. In cases where the resident is no longer able to express his/her desires, physicians coulcf hear the relatives' opinion of what they would be. In the end, such a mechanism could be a time-saver for physicians. Perhaps more feasible, geriatric nurse practitioners (GNPs) could be specifically hired to assess and monitor residents' trajectory locations and to act as liaisons for residents and family members. Indications are that this alternative, albeit with some territorial problems of its own, offers
102 Carolyn L. Wiener and Jeanie Kayser-Jones promising potential (Wieland et al. 1986, Kane et al. 1988, Mezey & Scanlon 1989). GNPs could lessen nursing staff's isolation, relieve physicians of onerous responsibility, and spare kin some of the distress revealed in their interviews. Of course, such innovation is not likely to be embraced by for-profit corporations already concerned about financial problems, unless they can be convinced that GNPs will increase operating efficiency by improving staff turnover rate. Equally desirable would be a concerted effort on the part of the organised medical and nursing communities to address the issue of developing incentives for nursing home work - especially while awaiting the government's glacier-like path toward adequately financing long-term care. Health professionals, through their forums, could call attention to the increased severity of illness of nursing home patients and to the implications of this problem for their work. There is mounting public concern in the United States, spurred by media attention, on such subjects as sustaining life on machines and medically assisting the death of terminal patients. Yet a problem of equal ethical importance - sustaining life under less than desirable conditions - receives little attention. Nursing home regulations ensure that all efforts will be made to prevent deaths. The issue of how residents live before they are labelled 'terminal' - and of the impact this makes on all concerned actors within the nursing home scene - deserves to be addressed and resolved. School of Nursing University of California San Franciso, CA 94143, U.S.A. Acknowledgements This research was supported by a grant from the National Institute on Aging, Grant No. AG05073. The authors wish to thank Dr. Anslem Strauss and Dr. Joseph Barbaccia for discussion around this paper. References Anspach, R. (1987) 'Prognostic conflict in life-and-death decisions: The organization as an ecology of ]inov/\edge\ Journal of Heatth and Sociat Behavior. 28, 215-231. Bennett, C. (1980) Nursing Home Life,- What It Is and What It Could Be New York: Tiresias Press. Blaxter, M. (1976) The Meaning of Disability New York: Neale Watson. Bowers, B. (1988) 'Family perceptions of care in nursing home'. The Gerontologist. 28, 361-368. Corbin, J. and Strauss, A. (1988) Unending Work San Francisco: Jossey Bass. Corbin, J. and Strauss, A. (1990, forthcoming) 'Grounded theory: Procedures, canons and evaluative criteria', Quatitative Sociotogy.
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