Editorial Board:
Editor:
George H. Conklin,
 North Carolina
 Central University

Board:
Bob Davis,
 North Carolina
 Agricultural and
 Technical State
 University

Richard Dixon,
 UNC-Wilmington

Ken Land,
 Duke University

Miles Simpson,
 North Carolina
 Central University

Ron Wimberley,
 N.C. State University

Robert Wortham,
 North Carolina
 Central University

Editorial Assistants

John W.M. Russell,
 Technical
 Consultant

Austin W. Ashe,
 North Carolina
 Central University

® 

Volume 7, Number 2

Fall/Winter 2009

An Involuntary Ethnography of a Stay in the Hospital:
Being Sick in a Sick Place

by

Robert K. Miller Jr
 
and 

Angela L. Wadsworth

University of North Carolina 
Wilmington

Introduction

    This paper is a narrative of the senior author's month-long stay in a hospital, beginning June 8, 2007. These events occurred after the author, on a trip to visit his parents, suffered a massive cerebellar stroke on a minor highway while alone in his car, eight hours from home and miles from the nearest hospital. This account ends when the author was released from the hospital a full month later and returned to his home. There he spent the remainder of the summer in recovery and underwent about a month of outpatient physical therapy at a local facility. He returned to UNCW at the start of the Fall, 2007 semester to resume his full-time duties as professor of sociology. This paper recounts many of his experiences while hospitalized from his perspective as a Ph.D. sociologist with more than 30 years of teaching and research experience. Thus the paper presents a set of sociological insights about his experiences as a patient in a hospital. The author is neither an ethnographer nor a qualitatively oriented sociologist, but "knew" early in his hospital stay that he had to "write up" his experiences. Using his general knowledge as a methodologist, the author, with the help of his colleague Angela Wadsworth, a medical sociologist, finally had the opportunity to do observational research—one of the things he has taught his sociological research methods students to do for more than 35 years. Strengths and weaknesses, advantages and limitations of such research are obvious, well-known and will not be reviewed here. For example, the reliability, validity, and generalizability of observations, claims of observed patterns, and general findings should be considered in the light of the overall strengths and weakness of the method. But even in the sociological literature of illness, patient narratives are dominated by accounts of chronic illness. This paper is an attempt to fill that gap by contributing to a sociology of critical illness from the patient's perspective (Rier 2000). On a lighter note, the author quips that ending up at this particular hospital was a "stroke of luck" because it had been recently credentialed as a "stroke center" and therefore had a fairly large staff of neurologists as well as an affiliated inpatient rehabilitation center a few miles away. And not unimportantly, the author lived to tell his tale.

    One early (and too often asked) question, "How did you know you were having a stroke?" soon became annoying, not only because of its repetitiveness, but because the answer was so obvious. The symptoms--severe head pain, loss of ability to speak, blurred vision, loss of balance, tingling lips (right side), and tingling foot (right side) were strong evidence that this was an unusual and possibly life-threatening event. The severity of the symptoms, being alone, and being in unfamiliar surroundings also contributed to early uncertainty, a foreboding of serious trouble, and feelings of dread and fear. The symptoms, their severity, and the application of knowledge accumulated from having lived as a conscious human being for 59 years all contributed to an early awareness that "something had gone terribly wrong" and this it was most likely a stroke. Another early often-heard, unsolicited, and unwelcome insight, "You are a lucky guy," did not help the author deal with his sense of loss or with the fact that his life was changing forever.

    Despite numerous public health campaigns about the dangers of hypertension and its sequela of stroke, or cerebrovascular accident as it is termed medically; for a lay person to apply the label or diagnosis of stroke presents an immediate challenge to the medical model of illness. The medical model assumes illness to be an "objective label given to anything that deviates from normal biological functioning," with physicians possessing the sole power to name and define illness (Weitz 2007:127). While we, as inhabitants of our bodies, are the ultimate experts when it comes to what is and is not normal for us; once a condition is deemed to be medical, doctors are solely responsible for determination of diagnosis and planning of treatment (Weitz). And this is not unreasonable. It is after all, what physicians are trained and expected to do. However, it becomes problematic when the medical model operates to the exclusion of other experience, in particular, the subjective experience of the patient (Kleinman 1988:5).

    The sociological model of illness, which sees illness as a subjective label and incorporates personal and social ideas of normality with scientific reasoning, becomes secondary at best (Weitz 2007). The primacy of the medical model, which substantiates and relies upon the continued power and authority of its practitioners, serves to further devalue patient input (Kleinman 1988:129).

    Patient participation in health care is largely affected by the type of illness with which the patient presents. There are obvious differences in the illness experience of persons presenting for treatment of a short-term, non-acute form of illness (an ankle sprain for example), compared with persons who are brought into an Emergency Room setting in a more critical state (during or immediately following a stroke). As noted by sociologist David Rier (2000) when discussing his experience of pneumonia treatment in an Intensive Care Unit, patients experiencing a serious health crisis are forced to trust their doctors and cooperate fully in order to return to optimum health (Cockerham 2007; Rier 2000). To raise questions, even for the purpose of information gathering and not as an attempt to challenge the authority of the physician, steps outside the activity-passivity model of doctor-patient interaction typically seen in acute care settings. In the activity-passivity model, the patient presents as "seriously ill or being treated on an emergency basis in a state of relative helplessness (Cockerham 2007:212)." Primary decision making as well as the power in the relationship belong to the physician, as the patient typically contributes very little to the situation due to the effect of the illness (Cockerham). To depart from this model can be seen as the patient questioning the physician's knowledge base and skill level, ultimately contributing little of patient benefit to the health care interaction.

    From the beginning, the author was repeatedly asked the same questions by different professional care givers--doctors, nurses, and staff. This was one of the earliest examples of depersonalization, a process in which the "patient vanishes (Zussman 1992:43)." In general, hospitals are not fun, happy, warm and fuzzy places. This hospital was no exception. From the very beginning, the place seemed formal, cold, sterile, and controlling. The process of depersonalization began rather quickly and included an almost immediate devaluation of patient input, a rapid denial of permission to make personal decisions, a more general loss of control, and having to fit into a routine characterized by a highly structured schedule. The author responded quickly to the powerlessness with feelings of resignation and mild resentment. Of course the author didn't like being treated like a "piece of meat (Feder-Alford 2006)," but in short order, that seems to be what he had become. As a patient, he became an object upon which procedures were performed. 

    "Whereas doctors typically are concerned with solving the puzzle of diagnosis and identifying a specific body part that requires treatment, patients are primarily concerned with the impact of illness on their lives (Weitz 2007:175)." The end result? Patients feeling objectified at the hands of medical personnel and unhappy with the level of care received; this can and often does include care that is "technically competent (Weitz 2007:175)." The role of the health belief model in this, as any medical encounter, cannot be ignored. The health belief model includes the assumption that patient noncompliance with medical treatment is the patient's fault, and comes from "psychological processes internal to the patient (Weitz 2007:175)." Among issues ignored are that the "mechanics and benefits" of the treatment regimen may not have been appropriately explained to the patient, leaving the patient to feel "in the dark" and further objectified (Weitz 2007:171). While the assumption on the part of health care workers that compliance is always good is well intentioned, it is not always what happens; particularly for persons with chronic health conditions who are accustomed to successfully managing their health with only routine monitoring and maintenance provided by the health care system (Kleinman 1988:129; Weitz 2007; Conrad 1988).

    The routines and timing of scheduled procedures seem to have been developed for the convenience of the staff, but they rarely seemed convenient to the author as a patient. The patient seems to be taken for granted and there was little if any patient input in defining routines or in the timing of procedures. As a patient, the author was routinely victimized by painful procedures with little or no warning or preparation. These included, but were not limited to, the insertion of ports, frequent blood tests (at all hours of the day and night, including 4:00 a.m.), frequent blood glucose "finger sticks" (the patient is diabetic), and the insertion and removal of a skull shunt (which included skull stapling).

    In describing the hospital-patient experience, Rose Weitz (2007) identifies four reasons for depersonalization. First, as was the case in the author's situation, patients present to hospitals in need of emergency care. The second point addresses the technical nature of modern hospital care, in which the staff focuses on the machines and the data they provide, as much or more than on the patient. The third reason has to do with the focus on emotional detachment taught during training and a focus on biology, with less emphasis on meeting non-physical medical needs of patients (psychological, emotional, and social needs). Finally, hospitals literally cannot afford to spend time on individualized care, but rely instead on the efficiency of schedules and routines in order to meet medical needs with the least number of personnel, spending as little time as possible with individual patients. Such bureaucracy leads to patients being awakened to take a sleeping pill, and having medical tests and procedures (4:00 a.m. blood tests) done at the convenience of the facility, not the patient. While the stated purpose of hospital mission statements is to meet the medical needs of individuals within their respective communities, implicit in these statements is the need to focus on a healthy profit margin, without which hospitals, to use a medical term, will "fail to thrive." 

    In previous hospitalizations, the author had noticed bureaucratization.  It was hard not to.  This experience was no exception, and he quickly noticed what seemed to be considerable bureaucratization. As a sociologist, he saw what seemed to be a high level of organizational complexity coupled with various forms of "rationality"--conformity to "protocol," considerable record-keeping and documentation of activities, a highly technical division of labor and task specialization, a very rigid task definition for positions, and a hierarchical organization of positions among which there was little or no overlap (Ritzer 1996; Weber 1921).

    From the perspective of the author, it was difficult to see how this bureaucratization led to better patient care. Instead, what he perceived to be a hyper-division of labor and detailed specialization and role segmentation had produced staff members who did not seem to be competent outside a limited realm of specialization or expertise. Furthermore, the author noticed another phenomenon that fascinated him--what he came to call structural holes. These are gaps among position-defined tasks and responsibilities. Tasks that fall into these gaps often don't "get done" because they are seemingly unassigned to any position. These structural holes contributed to responsibility issues and partially explain why some tasks didn't "get done" or were done poorly and often in an ad hoc manner.  While the questions, "Who is in charge?" or "Who is responsible around here, anyway?" were never verbalized, sometimes work didn't get done because it was tacitly understood that "it was no one's responsibility."

    Perhaps contributing to this problem was long and discontinuous shifts. Hospital shift structures contribute to a fragmentation of information and declines in continuity of patient care. Additionally, record-keeping demands sometimes seemed to support nurse and staff claims that "We're busy." and justifications for superficial and incomplete patient care.

    Still another problem was incompetent treatment of serious patient problems or problems that were nonroutine and didn't "fit." For example, the only response when the author developed ICU psychosis was a perfunctory visit from a clinical psychologist for a suicide evaluation. While the condition was later explained to the author's wife as a fairly common problem under these circumstances, directly informing the patient simply never occurred. 

    One problem of hyper-bureaucratization is goal displacement--a preoccupation with means and the maintenance of the organization, per se. One form was the preoccupation with protocol (formal procedures and rules) as the presumed effective means to accomplishment of goals—"successful outcomes." This contributed to the routinization of patient care. But what happens when following protocol "doesn't work?" Evidence of lack of "success" makes staff uncomfortable because it represents unwanted evidence and challenges to the presumed efficacy of procedures as well as to professional self-definitions. In some situations, the patient and his condition may become a source of embarrassment. In anticipation of such events, there have developed strong and continuing efforts to routinize the nonroutine. The thinking underlying the presumption that formalization and the strict adherence to protocol will lead to successful outcomes becomes almost magical. 

    One overarching experience was patient loss of freedom, manifest in numerous ways, including lack of involvement in care-taking decisions and unwillingness of staff to accept the legitimacy of patient self-definition. Excellent examples of social negotiation between positions of unequal power are those between patient and various professional care givers. On one hand, professional caregivers have varying levels of power to define, label and stereotype patients. On the other hand, patients can resist, but resistance itself implies a loss of agency. Patients are acted upon--not permitted to function independently as actors, but rather within narrowly circumscribed roles defined by the caregivers. Cockerham (2007) defines caregiver efforts to impose their own definitions of the patient as stripping. Stripping takes place when the hospital takes from the patient "past representations of self (Cockerham 2007:287; Coe 1978)." The most immediate removal is literally the patient's clothes and personal items of value, and extends to control of visitation if visitation is allowed, dietary monitoring and control, mobility within the institution, activities while asleep and awake, in short, the patient's social life while in the hospital (Cockerham 2007).  A few examples should suffice.  The patient came to realize that he was being "covertly" observed while he ate to determine whether he was practicing "correct" swallowing techniques.  At another point, the patient was not permitted to leave his bed to go to the bathroom, even though ringing the bell for nursing assistance didn't bring a nurse for more than 20 minutes.  The "solution" was to "rig" the patient's bed so an alarm bell would sound if the patient got out of bed.

    The professional staff's definition of treatment includes an unwillingness to accept patient self-assessment and self-treatment. For example, the author experienced conflict with the professional care-givers over control of his diabetes management. From the beginning, it seemed that the staff had sought "excuses" to strip the patient of his insulin pump and control of his insulin management. Yet the inferiority of staff control of the patient's insulin management was evident from the outset and it deteriorated from there. Early on, it became clear that most of the nurses and physicians lacked information about diabetes management and seemed to react to their own self awareness of ignorance with fear and overzealous efforts to "control" the disease. They used obsolete blood glucose monitoring equipment, and after finally taking away the patient's insulin pump, mindlessly "chased blood sugars" with highly variable injections based on immediately prior blood glucose readings.

    Along with patient loss of agency and self-definition came the gradual objectification of the patient. For the critically ill, including ICU patients, patient empowerment is more rhetoric than reality—it is mostly "lip service." There was actually little evidence for such empowerment. It may well be that most critically ill ICU patients are simply not in positions to be empowered--partners in their own care. Thus, professional caregiver responses include not paying attention to or relying on the patient. As a stroke victim assumed to be incapacitated, the author was stereotyped early on as a patient who could do nothing to assist in his own treatment.

    Often, professional care-giver politeness and attentiveness seemed pro forma. The care givers introduced themselves and appeared to be attentive and to listen politely. Sometimes they requested information that occasionally included requests for feedback. However, certain information was clearly "unwanted" and was consequently unrewarded and simply ignored. There were negative responses to this unwanted information, which included "patient suggestions," patient requests, and certainly patient criticism. In short, the caregivers saw and heard what they wanted, but ignored the rest. And when it was discovered that patient did not fit the stereotype of stroke victim and violated care giver expectations, he became a "problematic" (as opposed to "bad") patient.

    A key piece of Parsons' concept of the sick role is expectations for how the patient "should" behave (Parsons 1951). Patients are expected to work toward the goal of recovery in cooperation with medical personnel. To ask questions and question caregivers' answers make authority figures in any setting uncomfortable. To do so in a health care setting invites the label of "bad patient," even when the patient is cooperating to the utmost of his ability and understanding of the need for various treatment regimens as explained by health care personnel.

    Professional caregivers place patients into categories that objectify and stereotype. Further, general organizational needs contribute to definitions of the patient role, and patients are expected to fit it. The outcome was depersonalization and dehumanization. For example, early on, the author was somehow identified as a "truck driver." What was the source of that incorrect label? Was it because he had a stroke while driving alone and far from home? When the author's wife discovered this error and informed the care-givers that he was, in fact, a university professor, staff members were visibly surprised, but no one apologized. As a matter of fact, during the author's entire stay in the hospital, he cannot remember receiving one apology or witnessing the admission of even one mistake.

    Being mistakenly assigned the social status of a working class truck driver carries distinct and powerful meaning. We know that, throughout the world, "socioeconomic status (SES) is one of the strongest and most consistent predictors of a person's health and life expectancy (Cockerham 2007:63)." Furthermore, within the measure of socioeconomic status, education has been identified as the strongest predictor of good health (Cockerham 2007). Persons with high levels of education have been shown to be best informed about the importance of living healthily, and by virtue of having professional jobs tend to have more control over their life situations (occupation, diet, leisure activities, where and how they live).

    Conversely, members of lower socioeconomic groups have been shown to have the worse health outcomes and habits, and as a result, shorter lifespans (Cockerham 2007). Work environments tend to be more dangerous and stressful, with longer hours maintained in sedentary or standing positions with little variation of mobility, and more repetitive motion while in these positions. High performance demands and little to no control in the work setting lead to increased stress, which is a direct contributor to physical and psychological distress. Living environments tend to be more stressful, with neighborhood and home conditions often contributing to illness in adults and children. The strength of this connection between social class and health has caused social class to be labeled as a "fundamental cause of illness (Weitz, 2007, p. 64)."

    Knowing this, it is quite reasonable to presume that misidentification of occupation and consequently, social class, can and did contribute to the quality of interaction between patient and health care providers. Prior research has suggested that physicians tend to relate better to more privileged persons who are closest to them in social background, educational and occupational experience. The more privileged patients are also more likely than the less privileged patients to reflect and share similar "values, norms, and attitudes" with their physicians (Cockerham, 2007:206). Additionally, physicians have been shown to pay more attention to higher SES patients, giving more validity to their comments, questions, and complaints.

    There was clear professional caregiver and institutional misidentification of the patient's identity (university professor who held a Ph.D.) as well as his efforts to maintain that identity. Professional caregiver power, including diagnostic power, shaped caregiver-patient interactions and definitions. The patient was simply not supported in his efforts to define himself, and in the absence of caregiver and institutional support, it was difficult for the patient to maintain his definition of self. 

Sources of Problems or Scapegoats?

    There is much literature that documents the fact that nurses socialize patients by using their power to label patients and use their power to reward and punish. No doubt nurses try to mold patients to behave in ways that make their jobs easier. Thus, the good patient fulfills expectations and stereotypes, is compliant with rules and protocol, isn't "demanding;" doesn't challenge nurses' competence or decisions, and doesn't complain or criticize. On the other hand, the bad patient doesn't fulfill expectations or stereotypes, is "noncompliant," is demanding, challenges authority, "asks too many questions," and criticizes (care, food, lack of information, procedures, nurses' decisions and treatments). As noted, nurses have at their disposal a structure of punishments and rewards. Rewards to good patients include speedy responses, quantity and quality attention; favors, and minor rule-breaking for patients. On the other hand, bad patient punishments include minimal attention (time, interaction, promptness), no provision of favors, and "following the rules—the letter, not the spirit, of the law." It is not clear to the author how he was defined. But he is sure that he was seen as an unusual and perhaps unconventional patient: First, he had a Ph.D., and second, he was not totally debilitated by his stroke. Finally, he would sometimes challenge caregiver procedures and decisions, and occasionally he displayed anger and frustration. 

Interchangeable Parts in a Highly Bureaucratized System

    The last few decades have seen many changes in the field of inpatient hospital nursing.  Insurance companies as well as federal and state health insurance programs have called for earlier release of patients than in times past, leading to patients being released "sicker and quicker" from hospitals (Weitz 2007:369). In order to hold down personnel costs, hospitals are hiring fewer RN's (registered nurses) now; the end result being sicker patients and fewer skilled nurses to provide care. A combination of responsibility for more administrative duties as well as hands-on tasks has led to deprofessionalization of nursing as well as a dramatic increase in nursing workload. These factors along with increased bureaucratization and corporatization of hospitals and an emphasis on cost control have led to high levels of frustration and career burnout (Weitz 2007).

    In the author's experience, nurses were shifted by the hospital from position to position and location to location as needed. Although much of the shifting may have been unavoidable, it contributed to a lack of continuity of care. Further, extensive paper-work and documentation of protocol led to a reduction in time available for patient care. The author rather quickly came to conclude that many nurses are overworked. They seem to be responsible for an increasing number of patients, and suffer from the demands of increasingly detailed record-keeping.

    The patient definition of nursing quality seems to be quite simple: good care appears to be holistic, is emotionally positive and supportive, goes beyond the bare minimum, takes initiative, and appears to be competent. There also seems to be a cohort effect. That is, older nurses are generally perceived to be more skilled, more competent, and more caring and compassionate (than younger nurses). It is possible that the more extensive experience of the older nurses enables them to more adequately fulfill the demands of their jobs. 

    Patient advocates had low status and authority in the organization. Their jobs are characterized by role conflict, because patient advocates are paid by the organization to represent its interests. In itself, this can lead to pro forma and ineffective advocacy for patients. Patient advocates were "tolerated" by the professional care giving staff.  Like "minority presence" officers at universities, the very existence of patient advocates on the staff is taken as "proof" of the modernity and "right mindedness" of the organization.  It is clear that the primary role of the patient advocate is to support continuation of successful organizational function. In actuality, the patient advocate serves as a tool of control by the organization to pacify patients and family members (Cockerham 2007). It was obvious that patient advocates had very little real power. Who then, did have real power to advocate for patients? Is it the patient, the patient's family, legal counsel, or none of these (Weitz 1999)? This may be viewed as a cynical answer, but the author concludes, "no one." 

    Potential threats of litigation seem to frighten professional caregivers. Professional care-giver and institutional concerns with self-protection against litigation have contributed to routinization of what can only be called extensive "preemptive labwork" and other procedures, as well as the development of and preoccupation with protocol, including the formalization and documentation of procedures that lead to extensive paper work, record-keeping and other means of demonstrating proper task performance. This increasingly formalized and detailed documentation of activities in the form of numerous and repeated tests and procedures have led to nurse overload. Overworked nurses have less time available for patient care (Matcha 2000).

    Rising medical costs are well documented. Does the rising cost of medical care lead to better medical care? Insurance company requirements contribute to extensive paper-work to document the fulfillment of protocol, but again this can change the character of patient care by reducing the time available for it. Further, control over medical decision-making through utilization review and pre-certification of medical need often require elaborate monitoring procedures that contribute to higher prices.

    One component of bureaucratization that contributes to higher prices is the emergence of specialists for everything. To the author, it seemed that if there was a task to be done, there was a specialist to do it. Increasing specialization may have benefits, but it has also contributed to fragmentation of care and increasing costs (Matcha 2000). The author witnessed several specialist boondoggles, but "respiratory therapy" provides one of the most outrageous examples. In this case, a $35.00 "respiratory therapy treatment" involved handing the patient an Advair Diskus, then standing beside his bed while he self-administered. The "therapy" itself required no more than two fine finger movements (not done by the therapist, but by the patient) to "cock" the Diskus for self administration, followed by inhalation. There was no prior or subsequent testing of blood pressure, pulse rate, or anything else, for that matter. The "therapist" simply stood by the patient's bed while the patient self-administered the pre-measured dosage of fluticasone propionate/salmeterol.

Involvement and Willingness to Pay for Procedures

    It became clear that professional caregivers take the power of insurance companies quite seriously in their decision making. Physicians know what insurance companies will pay for and how much they will pay. Thus insurance companies affect the kinds and amounts of treatment prescribed:  insurance company involvement clearly affects prices set for services and procedures in a complex game in which physicians set prices to recoup what they think they deserve, while insurance companies set limits for what they will pay for services, essentially "discounting" prices and saving patients (and themselves) money. Physicians may order more tests and procedures for a variety of reasons, including self-protection from lawsuits because results of such tests can serve as evidence for use in potential law suits.

Stakeholders who Seem to Run the Ship

    The author experienced and has learned of numerous examples of insurance company influence on treatments and prescriptions. The author experienced more than a half day delay in his discharge because he had to wait for his insurance company's decision regarding its willingness to pay for post-discharge physical therapy. Would the therapy be inpatient or outpatient, and how many therapy sessions would the insurance cover? Clearly, insurance company involvement in such decisions affects the kinds of treatments physicians prescribe. 

    Recent research consistently reveals that medical care in America is expensive, and that increases in medical costs have exceeded the general rate of inflation for some time. While the $3.00 aspirin may be apocryphal, the $35.00 "respiratory therapy," the $19.75 fee for each (self administered finger stick) blood glucose monitoring, and the $409.00 inhalation diskus were not. Finally, when the author inquired about the cost of transportation home in an ambulance (an eight hour trip), he was informed that it would be $5,000. It may be that those who have insurance or can "pay out of pocket" do receive some of the best medical care in the world. But if the author's experience is any indication, even those who have insurance or financial assets to pay to increasing costs do not receive especially good care.  What is more, after more than two years, the author is still being dunned by the hospital because of a (large) mistake in which his insurance company failed to pay for any of the charges billed to it. These are mind-boggling bureaucratic errors that are difficult to "excuse."   In the modern world, it is no longer "mano a mano," but rather "bureaucracy a bureaucracy." 

    This research is not a criticism of individuals—nurses, doctors, or other professional care-givers. In fact, the patient and coauthor have encountered distributions of skill and personal competence and effectiveness that were not unusual in any notable way. Instead, this has been a sociological analysis of an organization—a hospital--conducted while the senior author was a patient there. More specifically, it is the work of a sociologist observing and describing what appeared to be organizational problems that jeopardize health care. It is our view that the hospital was a "sick place" (Rosenhahn 1973) and that the hyper-bureaucratization of medical care has victimized all participants--patients and staff alike. It is ironic that with the passage of time, hospitals seem to serve patients, nurses, and other care-givers less effectively. Caregiver efforts to treat patients include efforts to define and label patients as a means to effectively accomplish tasks and achieve goals. Manipulation of patient subjective identity becomes part of the patient's "treatment" as the patient "becomes" his or her illness. Caregivers of critically ill patients discount patients' own efforts to define themselves and assist as active participants in decision making.

    Several concerns of post-Parsonsian medical sociological literature—issues of full disclosure of information to patients, issues of power including patient self-definition and patient negotiation/collaboration with physicians—seem to be operative, but of less relevance to critically ill patients. Nevertheless, there remains a need for medical sociology to focus on the critically ill from the patient's perspective (Rier 2000; 2007).

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