Doctor, Refer Thyself

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Imagine this scenario: After battling weeks of fatigue, you visit your general practitioner. To aid in diagnosis, the doctor suggests you submit to blood tests three times a week. If you found out that the physician had a financial interest in the lab that was testing your blood, you might be outraged--and with good reason. Self-referral is a conflict of interest that Congress has banned for nearly all physicians. Kidney doctors, however, are exempt. They can--and do--refer patients to dialysis clinics in which they have a financial stake. "Dialysis is almost unique [in this respect]," says Jim Kronenberg of the Oregon Medical Association. It's not clear why kidney doctors got their exemption. Industry sources say that in the early days of dialysis there were few machines and few kidney doctors. Today, however, dialysis machines are plentiful, yet it is common practice for nephrologists to refer patients to their own dialysis clinics. In fact, self-referral is an important part of Renal Care Group, Inc.'s strategy. The company, which owns the majority of Pacific Northwest Renal Services, came to Portland in February 1998, buying an interest in clinics owned by Legacy and OHSU. It also bought 90 percent of the Comprehensive Kidney Center, located at 2300 SW 6th Ave., from nine physicians. Those doctors now have an incentive to refer patients to PNRS--which is the idea, according to the RCGI documents. "In many instances, stockholders of the company are the primary referral sources for dialysis centers operated by the company," states the most recent quarterly report. Doctors are ethically bound to deliver the best patient care possible, but as owners of a publicly traded company they are also beholden to shareholders, whose only concern is profit. Until recently RCGI was a fabulous investment. Results exceeded analysts' profit expectations for 12 consecutive quarters. On March 2, the company announced that its profits for the fourth quarter were 72 percent higher than for the same period last year. But the stellar results couldn't stem RCGI's free fall in the stock market. The company's share price has dropped more than 50 percent since mid-January. It's not clear what caused the drop, but since last September RCGI insiders have been heavy sellers. More recently, poor results by a competitor, Los Angeles-based Total Renal Care, have weighed on the dialysis industry.--NJBack to Lead Story- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -Willamette Week | originally published March 24, 1999


Better Health Through Better Dialysis
Content copyright 2005 Arlene Mullin

The Double-Bind Between Dialysis Patients and their Health Practitioners

 

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by Linda Alexander

In: *The Relevance of Social Science for Medicine*
L. Eisenberg and A. Kleinman (eds.),
D. Reidel Publishing Company. 1980, pp. 307-329.
------------------------------------------
LINDA ALEXANDER
14. THE DOUBLE-BIND BETWEEN DIALYSIS PATIENTS
AND THEIR HEALTH PRACTITIONERS
INTRODUCTION
One of the tasks of the social scientist in medicine is to provide models for analysis which are clear, elegant, and useful to clinicians. Such models provide rational, rather than empirical, guidelines for
understanding phenomena, and impose economy on conjecture: models indicate the logically necessary features of an event or process. One model which has proved useful originated in the ethnographic study of the latmul people (Bateson 19S8). This model has its most sophisticated formulation as a description of the antecedents of schizophrenia (Bateson et al. 1956), and has also been used as a descriptive construct with respect to psychotherapist-patient relations (Savage 1961), hypnotic trance induction(Haley 1958), identity confusion among twins (Rosenthal 1960), juvenile delinquency (Ferreira 1960), play, fantasy and courtship (Bateson 1955; Haley 1955), and disturbed behavior in experimental animals (Scheflen 1960). A great range of applications of the theory have been referenced by Watzlawick (1963): its original expression and elaborations may be found in Bateson's collected works, "Steps to an Ecology of Mind" (I972).
The model, usually called the double bind theory, is especially informative when applied to the dynamics of chronic illness. In the health care system there are a great number of persons who present for
treatment but whose symptoms remain or proliferate after extensive medical care has been given. This population divides into two groups: those patients for whose symptoms medical profes sionals cannot find organic or psychogenic bases, and those patients whose symptoms are understood but for whom treatment is palliative at best or to no avail, Those in the first group are colloquially named "crocks", those in the second group are "chronics". The double bind model may be fruitfully applied to the problems generated by both groups: here, medically identified and sanctioned symptorn persistence will be explored and the model applied to na chronic group of patients undergoing the treatment of hemodialysis. This patient group is notable because of the high incidence of psychiatric nmorbidity and suicide it sustains. Alternative explanations for illness nbehavior are first offered: the double bind model is briefly presented; the model is applied to clinical data obtained in a hemodialysis ward; and a brief discussion of case histories is given.
PARENT, CHILD OR PRACTITIONER, PATIENT
An influential view of sick persons appears to have originated with Talcott Parsons (1951, 1953, 1958; and Fox 1952). It has dominated much medical perception of patients, as will be shown. The essentials of his formulation are as follows:
That there are uniformities in the constitutions of all human groups at the organic level goes without saying, and hence that many of the problems of somatic medicine are independent of social and cultural variability (1958:168).
In spite of somatic factors, though, any individual's commitment to the values of his own society, including those pertinent to illness, is essentially moral, and variance with this morality is deviance. Illness is designated as illegitimate:
The stigmatizing of illness as undesirable, and the mobilization of considerable resources of a community to combat illness is a reaffirmation of the valuation of health and the countervailing influence against the temptation for illness, and hence the various components which go into its motivation, to grow and spread. (I958:177)
According to Parsons, there are four criteria which define the sick role and which transcend cultural boundaries. A particular culture may emphasize or be dominated by one or more of these criteria. The sick role consists of an exemption from other role obligations; it is an involuntary state and the sick person is not responsible for his illness; his illness is legitimized on a conditional basis; he is obliged to cooperate in altering his state and in evacuating the sick role.
Regarding the motivations for illness, Parsons says:
I may start by suggesting that all patterns of deviant behavior ... involve the primacy of elements of regressive motivational structure in the psychological sense. (1958:154)
With Fox, Parsons produces a metaphor based on the similarity they see between the sick person's incapacitated state and a chfld's immature state. Both are dependent and need the care of more adequate persons. "Thus in these two senses, illness is not unlike more or less complete reversion to childhood" (1952:235). The physician is analogous to parent, the hospital becomes a functional alternative to the family.
The level of generality intended by Parson's approach permits cross-cultural comparisons and a seminal means of categorizing the social consequences of illness. However, other writers have used the theory in a less than general manner:
The enforced slate of dependency in illness can gratify strong needs to be taken care of, as the individual was cared for as a child (King 1963:112).... the sick person's world becomes remarkably like that of an infant, and the behavior resulting from these aspects is necessarily infantile, too(Barker et al. 1953:321).
In a small world like that of the provincial of the child, objectivity or the explanation of occurrences in terms of a wide context of relevant conditions is impossible ... [the sick person's world] is no longer plural, but singular and egocentric, like that of in infant (Barker et al. 1953:332). ... the state of convalescence is structurally and dynamically similar to adolescence, The behavior of the convalescent is analogous to that of the adolescent (Lederer 1958:256).
They do not realize that these "bids for attention" are much like the cries of a baby ... Most patients comply trustingly with the exigencies of treatment, but not all are "good children" (Roche Laboratories; 1968).
The characteristics alleged to accompany sick role regression are egocentricity, selfishness, exaggerated concern with trifling matters, domination, insecurity, intolerance, apathy and disinterest, dependency
and hypochondriasis. On the surface the view of sick persons as children may appear sympathetic: children are the objects of gentle sentiments and affection in most cultures. But in fact the terms "regressed", "infantile", "dependent", are deprecatory and descriptive of psychopathology in this culture. This view of patients sanctions the delegation of control of large parts of their lives to others: the
consequence of treating sick adults as children is destructive, as will be shown.
Hemodialysis patients are engaged in ongoing repetitive relations with health care professionals. They are exemplary of the population of patients we call "chronics", for whom modern medicine and technology have provided an illness-maintenance system rather than a health-maintenance system. Their interaction with the health care system is interminable, except by death or organ graft. They are immoral in the Parsonian sense; they may not evacuate the sick role. It is thus that we may see the cumulative effects of a health care professional attitude or prejudice in this group of patients. The literature on the problems accompanying hemodialysis is extensive and by its quantity testifies to the frustration experienced by all who are involved in it. T'he literature is imbued with an implicit view of the patient as infantile and regressed. A variety of causes ar proposed for the high incidence of psychiatric morbidity and suicidal tendency in the dialysis patient population: patient predisposition, uremia and its concomitants, stress, body image distortion, anxiety, dependency, depression, deprivation, fear of loss, denial and the absence of denial are examples. The patients are characterized in the literature by their lassitude, organicity, psychosis or acute delirium, apathy, euphoria, acute and chronic anxiety, headaches, vomiting, depression, fatigue, insomnia, drive frustrations, fear of loss, denial, restlessness, irritability toward staff, family and employers, impatience, excessive demands, complaintiveness, anger, bizarre body image changes including phantom urination, philosophical passivity, and noncompliance. (Short and Wilson 1969; Blatt and Tsushina 1966; De-Nour 1969; Abram 1971; Abram 1974; Cummings 1970; Crammond et a]. 1968; Norton 1969; Eisendrath et al. 1970; MacNamera 1967, Friedman et al. 1970)
The unfettered use of a Parsonian model leads directly to a punitive and manipulative medicine. On the other hand, its natural antithesis, humanism, has its own dangers and we will explore these next, before
reviewing the deficits of both approaches and proposing an alternative.
VILLAIN VICTIM OR PRACTITIONER PATIENT
In contrast to the view of the sick person as regressed and
....................................(lacuna)........................................
that he is suppressed and deprived. As a victim of suppression, the patient contends first with his physician. The physician is both the product of a long personal history and of a standardized medical training. His training, once completed, entitles him to join a subcultural group characterized by homogeneity of attitudes and values. Homogeneity of medical training in the United States leads to a belief that adequate medical care can be given
. . . only under a certain type of social organization which, on examination, frequently turns out to be a close approximation to the patterns with which persons undertaking the program are most familiar
(Saunders 1954:239).
The conditioning and patterning of the medical doctor renders him very different from most of his patients and
. . . of all the subcultural differences that may divide practitioner from patient in a given society, the subculture of the medical profession itself may well be the most critical (Wilson 1963:283).
All practitioners are professionals and all patients are amateurs (Wilson 1963:279).
Increasing specialization and the technological advances which demand it have seen the demise of the traditional general practitioner who once maintained a one-to-one relation with his patient: team care and
unfamiliar rotating physicians typically confront the patient now and the encounter is depersonalized (Stevens 1971 ; Weaver 1968; Paul 1955). The interaction between doctor and patient is a matter of mutual role definition and the behavior of each is shaped by the other, but
The practitioner has a nearly exclusive monopoly of psychological and social leverage . . . the practitioner has more to do with defining the patient's role than the patient has with defining the practitioner's
(Wilson 1963:279).
That which the practitioner has, and the patient lacks, is information regarding the patient's diagnosis, prognosis, and treatment. The decision to share these data is the physician's and actual sharing is contingent on the mode and manner of communication, which is often flawed (Korsch and Negrete 1972). Communication may fail because of the level of abstraction used by the physician, the technical vocabulary or reference, or even the value assumptions which underlie his explications. In most instances the physician is operating on incomplete data and
... resorts to a prior assumptions and value orientations, many of which are shared with his colleagues. These make up the body of professional traditions (Ruesch 1963:74).
Whatever prejudices, motivations, or professional fashion trends comprise the body of professional traditions on which the physician relies, they are at best surmised or ignored by the patient. In effect, the patient relates as an individual to an institution.
With respect to the nature of hospitalization and its effect on the patient, much has been written in the sympathetic or humanistic vein. The hospital is likened to a prison:
Except for imprisonment, no other circumstance in our society requires one to surrender more of his personal liberty, prerogatives and identification (Wahl 1966:276).
Stress of hospitalization has been evaluated with behavioral and physiological measures (Tolson 1965). It is usually attributed to the patient's being separated from his loved ones and his customary lifestyle,
to the increased social distance which prevails between himself and the doctors, to the hospital itself as an atmosphere of crisis and strain (King 1962; Simmons and Wolff 1954). Some studies have focused on the
people with whom the patient relates while in the hospital: doctors, nurses, aides, orderlies, technicians, etc. These studies indicate that a hospital ward is a self-contained social system with medical personnel as
the main actors. The patient plays a transient bit part. Members of the subgroups comprising the staff tend to interact mostly with others in their own specialty and ideologies between these groups tend to become more and more disparate (Wessen 1958). The channeling of interaction among personnel of various occupational levels is assumed to have dysfunctional influence on patient care (Croog 1963).
In addition to the anonymity and stress the hospitalized patient is alleged to experience are the consequences of the dualistic, hence competitive, social structure of the hospital (Smith 1958), the political and power interests of medical groups and factions (Stevens 1971), and the possibility that hospitals attract a relatively large number of "queer" people as employees (Smith 1958). Kiev points out that many of the symptoms manifested by hospitalized psychiatric patients are not characteristic of their actual disorder, but are "secondary symptoms grafted on" and result from their interrelations with hospital staff (Kiev 1970).
Recent literature, which will not be reviewed here, is marked by a growing accusatory and intemperate posture in those who criticize the institution of Western clinical medicine for its lack of personalized service and humanism. A sort of medical villainy is alleged to operate, with patients the hapless victims of resources controlled and relinquished only for the benefit of the professional caretakers. The implicit condescension in these purportedly humanistic critics toward patients is revealed in their depictions of patients as witless and incompetent to help themselves and as ignorant of options and passively manipulated by the system. In fact many of the assumptions about humanistic care have never been tested. That patients respond more readily to benign physician stereotypes - physicians who are warm, empathetic, compassionate, congenial - than to physicians who are brusque, terse, distant and competent, has not been shown, to my knowledge. While the functional design of hospitals results in separation
from loved ones, social distance, arbitrary schedules, alien experiences, so do vacations which are designed to be recreational. That a detached, objective apprehension of patients is less curative than an involved, personalized apprehension has not been systematically or rigorously demonstrated.
Sentimentality is the hallmark of the humanistic approach and like motherhood, the flag and apple pie, humanism presents itself as self-evidently good. In fact the non- obvious consequences of unexamined
humanism and sentiment in medicine are degenerative.
Dialysis patients have presented larger interpersonal problems for health care professionals to consider than many other chronic groups, as indicated in the review of their characteristics above. Their care entails attendance to variables not usually included in treatment plans. The expansion of institutionalized care to include the impact of the treatment and disease on the patient's family, employment, economics, education, and life in general reflects a growing omni- potence in the medical profession's assumptions about chronic care. The "whole patient" concept is well illustrated in this expanding medical procedure and shown to be fallacious as well as damaging, as will be discussed below.
The literature reveals that patients are, in fact, sometimes seen as victims by their caretakers or observers. Nurses sometimes dream about hemodialysis (Foy 1970). Frequent topics in dialysis staff meetings are
the "obnoxious behavior" of patients (Eisendrath et al. 1970). In a paper discussing patient withdrawal from dialysis programs as a clinical problem, it was noted that
Throughout the course of treatment, if the patient gained too much weight or failed to function up to staff expectations, the staff's exhortations, if not heeded by the patient, would be followed by anger, withdrawal, and explicitly expressed disinterest in the patient (McKegney and Lange 1971:271).
Nurses may feel overprotective and possessive of these patients and are jealous of other staff who work with them, are reluctant to relinquish control of the patient, and even resent patients assuming responsibility for themselves in certain areas (De-Nour and Czaczkes 1968). Social workers devote a large amount of time to these patients, arranging many aspects of the patients' lives to suit the demands of treatment. In one case a worker spent more than I5O hours on a patient's financial problems
(MacNamera 1967) while in another similar case a patient purchased a new car while the social worker was on vacation, thus undoing all the work (Cramond et al. 1968).
One study documents that a change in the patient's perception of control does occur during the course of treatment. Goldstein and Reznikoff (1971), using Rotter's concept of locus of control, found that
According to this framework, individuals perceive the source of reinforcements on a continuum. Those with a purely internal locus of control perceive rewards and punishments occurring as essentially a direct
consequence of their behavior ... On the other end of the continuum are those individuals with external locus of control. They perceive events in their lives as occurring on a random or chance basis, independently of their actions (Goldstein and Reznikoff 1971:1205).
Hemodialysis patients evidenced a significantly greater degree of external control than did patients in another medical category. If perceiving that outcomes are unrelated to one's efforts is analogous to feeling a "victim", this study suggests that the conditions which operate to skew control radically, rendering some persons omnipotent and others helpless, may be present in hemodialysis contexts. However nothing in the literature recommends that we suppose villainy to be operating. In fact, the frustration and grief mutually expressed by professionals and patients in this difficult area of healing and ailing are poignant when so many best efforts are evinced but unsuccessful.
SYNTHESIS: THE DOUBLE BIND THEORY
The view of the patient as child and the view of the patient as victim are ultimately the same, in terms of their underlying structure. Both views assign a set of attributes or characteristics to one member in the
patient-practitioner relation and then infer the attributes of the other. If the patient is like a child, it follows that the practitioner is analogous to parent. If a patient is a victim, there must be a victimizer:
let organized American medicine be the villain. Both views adopt an extreme example of distribution of control, coercion, and authority, and neither deserves a finer analysis since they are stereotypic, trite, and
they overlook the complex symbiosis and exchange that always obtain between individuals in relationships. Their prevalence, however, should give us serious pause. Such views were given recent impetus by popularized psychotherapy programs, for example, Transactional Analysis. Characterizations of patients as children and victims both implicitly recommend that a more egalitarian distribution of responsibility in such relationships would be corrective. Paradoxically both characterizations sanction and lead to more control rather than less by persons other than patients.
The double bind theory is known primarily for its formula for inducing context-dependent psychosis. The theory incorporates other concepts about relationships which are clear, elegant, and equally useful. A
straightforward application of the theory has been given elsewhere (Alexander 1977). Here we want to explore the entire model subsumed by the name double bind and not only its more obvious paraphrase. We want to shift our focus now from entities, things, and people and their intrinsic attributes or dispositions, to the nature and structure of the relationships that obtain between them. We want to avoid reification of
these relationships while at the same time categorizing them. And it is important to understand the precise definition of a paradox and not just its consequence in human affairs. It is important to distinguish the redundant paradox called double bind, a powerful pathogenic, from singular paradoxes, which can inspire creative response, and from contradictions, which are generative of oscillation and alternation rather than behavioral paralysis. In that interest, a review of concepts follows.
The theory assumes that all relationships have two and only two elementary forms. These are called symmetrical or complementary. A symmetrical relation is one in which the relating parties express or exchange the same kind of behavior.
Examples are boxing matches, debates, armament races, or all cases where "A is stimulated to do something because B has done the same thing; and where B does more of this because A did some of it . . ." (Bateson and Jackson 1964: 270). In a complementary relation, the relating parties express or exchange differing kinds of behavior.
This category of complementary interaction includes, for example, dominance and submission, exhibitionism and spectatorship, succoring and dependence, and so forth ... a series of patterns where there is a mutual fitting between A's behavior and that of B (Bateson and Jackson 1964:270).
Complementary relations are antithetical to symmetrical relations and the predominance of one in a context precludes the effectiveness of the other.
Human relationships are complex, ongoing, qualified by feedback and context, and not amenable to simple analysis. To assign complementarity or symmetry, or some alternation between these two modes of interaction, to a relationship is to make a generalization about the quality of the relationship. For our purposes it is sufficient to use a generalization about the complementary nature of patient-practitioner relations, although far finer analysis is possible. The kinds of complementarity that predominate in the relationship between practitioner and patient are various: information-giving and information-receiving, teaching and learning, dominance and submission, succoring and dependence, intrusion and exposure, comfort and complaint, service and payment are a few. The kinds of symmetry that occur in these relationships are also various but infrequent, atypical, and always qualified by the overriding complement of healing and ailing.
Besides identifying the hierarchical or complementary structure of relationships, and the linear or symmetrical structure, the double bind theory relies on a conceptualization of communication which utilizes, in any given exchange, three levels of information simultaneously. Quite simply, these three levels of information include what is said (the verbal information), what is meant by what is said (usually expressed kinesically and nonverbally), and what is the case (situational information). For example, the patient says "I hurt" verbally; the patient's somatic state, posture, and facial expression confirm the presence of pain and render the verbal message "true"; and the patient is known to have a pain-producing
lesion. Both the patient and the recipient of the patient's communication draw simultaneously on these three levels of information in order to complete a successful communicational exchange. In the example given, the total communication is congruent.
But communications are not always congruent. In the example given, the patient may be lying. One might as easily say "I love you" or "it is Wednesday" as "I hurt". In many cases nonsense results, but whenever one level of information simultaneously negates that which is asserted on another level, paradox results. In graphic terms, where "+" stands for assertion of a proposition and "-"stands for its denial or negation, all possible congruities and incongruities - paradoxes - are shown on the following matrix.
Verbal information + + + + - - - -
Kinesic information + + - - + + - -
Situational Information + - + - + - + -
1 2 3 4 5 6 7 8
Single or episodic occurrences of such paradoxes are common in our experience. A general example might be the professed efforts on the part of the United States in behalf of peace in the Viet Nam War, coupled with an escalation of heavy bombing. While not devastating to our beliefs in things as they are, such paradoxes produce distrust and skepticism. Another example is humor, which is the intended manipulation of levels of communication, in which case we laugh. But when whole complexes of ongoing
interpersonal relations are marked by hypocrisy and paradox, we have pathogenesis.
Full double binds, or redundant "unresolvable sequences of experiences" (Bateson et al. 1956:174) are not common in our normal discourse with the world. Bateson specifies six criteria as conditions for the occurrence of the double bind (Bateson et al. 1956:175). These are paraphrased, simplified, and reordered below for their application to the context of chronic illness.
1. Two or more persons in an ongoing complementary relationship, wherein
2. one issues assertions which direct the behavior of the other and which
implicitly or explicitly require compliance. These are called primary
injunctions and are frequently, though not necessarily, verbal.
3. These assertions are simultaneously negated by secondary injunctions
on another level of information. The secondary injunctions are
usually, though not necessarily, conveyed through posture, tone of
voice, kinesics, nonverbally. These also require compliance.
4. The recipient of these communications is directed by a tertiary
injunction which prohibits escape from the relationship or corrective
comment on it. This information is usually, though not necessarily,
situational. A paraplegic may not cease dependency on others, an
infant may not quit the relationship with parents.
5. The paradoxical communication pattern (2, 3 above) repeats in the
relationship and comes to be anticipated, until
6. the person receiving the injunctions has learned to "perceive his
universe in double bind patterns ... almost any part of a double bind
sequence may be sufficient to precipitate panic or rage." (Bateson et al.
1956:175)
In less rigorous terms, the theory tells us that if a person is routinely engaged in complementarity, and is repetitively punished for his response to directives (which are simultaneously negated and thus impossible to follow), he will lose trust. He will learn to anticipate punishment or disapproval and out of this pessimism will generate behaviors which appear to be unrelated to immediate stimuli. Psychosis is not the only possible outcome: various aberrant behaviors may result.
Paradox invokes an inappropriate response in the sense that no response can be appropriate when it issues from a directive which is simultaneously denied. But paradox needs to be distinguished from contradiction. Contradiction occurs when, in sequence, an assertion is made and then denied. The
temporal factor distinguishes it from paradox and also permits adaptive response. For example we nurture our children when they are small but we switch to symmetry when they become adult, a sort of long term parental contradiction, appropriate to circumstance. Even less appropriate parental contradiction, as when a mother alternates frequently between nurturance and symmetry with her young child, can be negotiated by the child by oscillations, between passive-receptive behaviors and assertive behaviors. Contradictions demand oscillation in ongoing relations if the behaviors of A and B are going to "fit" or match: adaptations may be devised. Paradox produces behavioral paralysis and displacement activities, not oscillation.
DIALYSIS AND DOUBLE BINDS
Most people experience illness, and the social relations it entails, as a transient event. They either get well and regain their pre-illness roles, or they die. Palliation is a recent alternative, and hemodialysis is the
epitome of illness maintenance. Chronicity, in this medical area, is not marked by episodic occurrences and remissions of symptoms, but by ramifying continuous sick role adaptations and treatments. The medical literature on hemodialysis, although only topically reviewed above, is an important sort of data in itself. Medical contributors from many different societies and cultures have described the problems incumbent on providing dialysis, yet the literature is pervaded by a homogeneity of descriptions
of patient and staff behaviors. Israeli practitioners and patients share the probbler of Marshall Islanders, Australians behave much like Africans in this context. While no suggestion is made here that cultural and communicational variables do not operate, or that the double bind model can replace all other explications for behavioral pathology in this circumstance, the use of the double bind theory does have nonobvious consequences in the development of plans for care.
The data presented below were obtained as part of a three-year participant observation or ethnographic study of an outpatient and home dialysis program in an urban general hospital. That the data are not idiosyncratic or confined to this particular hospital is confirmed by their similarity to that reported in the literature and found in other facilities by this and other investigators.
Hemodialysis patients are clearly involved in ongoing complementary relations with their practitioners. Their three-times-weekly, six or eight hours per treatment, schedules, require it. Whether treated as inpatients or outpatients in an institutional facility, or at home with the help of a spouse or family member, they are engaged in ongoing redundant complements. If we examine the kind of communication transacted by these patients and practitioners, we find that most of it is injunctive or directive of action on the part of the patient. Prescriptions for proper dietary and fluid intake, attention to asepsis, urine output, and treatment procedure, as well as for proper attitude, activity, affect and self- presentation, monopolize the communications. The multitudes of different directives to patients issuing from practitioners, family
members, agencies and institutions, and from the demands of the illness, can be categorized as of three basic sorts. These constitute primary injunctions in a double bind formula:
(1) Be independent.
(2) Be normal.
(3) Be grateful.
The directive "be independent" follows from the very real need to delegate as much as possible of this complex treatment to patients themselves, since its institutional provision is very expensive and the resources scarce, While necessary, the effort is also ambivalent and sabotaged by the complex liability system traditional in medicine. Evidence of the ambivalence is well shown in the following excerpt from a medical staff meeting where A, B, and C are medical practitioners:
A. The patient should be intimately involved with his dialysis. This is
why we don't allow patients to sleep during their treatments.
B. What about patients changing the light bulbs in their machines? We've
always relied on the use of a technician ... now I'm reconsidering, maybe
patients should know more about the mechanical aspects of it.
C. I don't think patients should get involved in the mechanical part ...
B. After the first dialysis, patients aren't allowed in bed at -
(another dialysis facility). They dialyze in a chair, and they study
or read.
A. I'm going to remove all the T.V's from the Center. It should be a
place of intensive training and sick people, not a place to sleep or
watch T.V..
B. At least they should take their blood pressure sitting up . . .
A. There (another facility), they are allowed to take their time
learning before they go home. Here, all the patients are supposed to
learn at the same rate. There's sort of a feeling of urgency.
C. Most of them don't want to learn.
A. Effective now, a new policy, no T.V.s in the Center.
In this verbal exchange, patients are seen as malingering in the sense that they watch television or sleep rather than participate in their treatment. At the same time they are seen as "sick people". They are
incompetent to change light bulbs in the machine and they don't want to learn, yet they are ultimately expected to learn to administer the entire treatment, and to learn at the same rate.
Teaching is systematic and determined with dialysis patients, instituted soon after they are admitted to the program. It is in the teaching-learning complement, embedded in the larger healing-ailing complement, that most aberrant behaviors and discrepancies were observed, although discrepancies occurred in other situations as well. Reading, graphic and lectured materials were presented to patients during their
treatments. Routine procedures such as meter reading, blood pressure recording, heparin administration, etc., were taught and were intended to keep patients involved in their treatment. Sleeping was prohibited and reliance on other patients for help or information was discouraged. Patients were given the
information they needed to properly complete some procedures, but much information was also withheld at the practitioners' discretion, being potentially disruptive of standardized and expedient procedure and subject to patient innovation. For example, the fact that many patients do not need a full six-hour treatment three-times weekly would never be professionally divulged, although many patients on home dialysis soon discovered this by experiment. Such information would jeopardize the economy that must underlie the administration of a service involving two treatment shifts, fifteen highly trained personnel, over fifty patients, and the resources of a busy general hospital.
The purpose of the training was ultimately to move the patient out of the expensive institutional frame and into his or her own home with treatment. Patients assigned a very different risk to their own treatment-maintenance than did practitioners. They could acknowledge their resistance to assuming control of their own care to some extent, usually however offering excuses such as "the landlord won't let me change the plumbing so we can install the machine," "my wife works and the kids have their own families and can't help with the treatment": these initial resistances were later replaced with frank admissions of terror and anxiety.
Patient: Every time the nurse comes in here she asks me the same
question. Every time, I forget the answer. There's something
wrong with my mind.
Patient: You see that patient over there? He always forgets about the
saline. One time he's going to die. The only thing is, I get scared,
I don't remember about the saline either.
Patient: I don't see how they can get away with this. It's their job. The
money I pay them, and they want me to do the work.
Patient: Please, find out for me when they plan to make me go home. You
don't think they'll make me go home next week, do you? I'm not
ready yet. I don't know enough to go home yet,
Implicit in the directives to the patients that they learn the treatment are rejection and abandonment, from the patients' point of view, and a primary injunction that they be independent and not needful of
professional care. "Be independent" is distinct from the possible variants of a directive to "do what I tell you to do". Compliance, conformity, cooperativeness, and doing what one is told are exceedingly different from trying to mobilize self-sufficiency and independence of decision in a complementary frame where the required resources for such action are controlled by others. In fact patients in this context cannot exercise
independence, yet practitioners often interpret patient resistance as intended rather than inevitable. Some practitioner remarks in this respect are:
Practitioner: She's the worst of the lot. She's not stupid, she just
doesn't give a damn.
Practitioner: You can assume that, any time a patient says he doesn't
understand something, that he's had it explained to him
thoroughly.
Practitioner: He's just dense. If you take the little intelligence some
of these people have, and take the rest away with uremia,
you aren't left with much.
Practitioner: Sure, they're sick. Very sick. Every time they're supposed
to do something, they're sick. You can sit around and
listen to them complain. But if they do what they're supposed
to, watch the diet and fluid, dialyze when they should,
they'd be perfectly all right. I think they like being
dependent.
The primary injunction to be independent is intrinsically paradoxical. One cannot be independent if one is made dependent on the directive to be so. It is also paradoxical in terms of extrinsic secondary injunctions which require conformity to the sick role in this society. Western institutional medicine reserves for itself the responsibility for the care of sick people who present themselves for care. In dialysis, it is typical to see a practitioner retake and rerecord the patient's blood pressure, after the patient has independently taken and recorded it. Staff override patient preferences on lunch and dinner menus, on needle insertion sites ("But there's no flow there, I have to put it higher"), on saline, heparin, dialysate, medication administrations, on almost all aspects of the procedure.
They must. Within the rigid liability system that operates in medical facilities, negligence is not a trivial charge. It should be clear by now that there are no victims in a double bind. All participants are caught in
mutually destructive behavior. That practitioners in the case at hand are guilty of negativism and accusation towards patients is a symptom of a problem of high order, not its cause.
Before proceeding to the other primary injunctions, "be normal" and "be grateful", we may pause to consider the tertiary, non-escape injunction that must be in effect for the six criteria of a double bind to be met. The infant may not cease dependency on parents, the paraplegic may not choose to be self-sufficient. What about hemodialysis patients?
Organ graft is a viable option for some, but kidney transplantation is also palliative. It is a temporary respite from dialysis, but it is not curative and it entertains its own risks, one viable risk being death.
Death is also an alternative to dialysis. Patients who voluntarily withdraw from treatment are called "suicides", although patients denied treatment for any reason are not yet called "homicides". Transfer to
another dialysis facility or to home treatment may or may not offer alternatives to problems associated with treatment at a given place. In most cases, it cannot, because as we hope to show, the problems of
dialysis are in large part inherent in the structure of the relationships it requires. They are, in its largest sense and meaning, iatrogenic.
If transplant, death, or transfer do not serve as alternatives to patients, they may serve as potent threats. The temptation to a program to offer a patient who is difficult to maintain on dialysis a less than ideal
cadaveric or related-donor kidney match is great. And whether real or not, patients express anxiety over the possibility of their expulsion from a program, of being "hated" by the practitioners who treat them, of
receiving inferior medical treatment or being assigned dialysis times they cannot meet without tremendous inconvenience, of being gossiped about ... the threat of punishment if they do not comply with the directives they encounter is very real to patients, even if their anxiety is unwarranted from a practitioner point of view. Patients may not easily escape from their perceived dilemma.
Because the dialysis procedure is ramifying in its impact on the patient's life, intruding on marital, sexual, employment, economic, and recreational domains, as well as physical and sensual domains, the practitioners in this specialty have felt it necessary to concern themselves with large areas of their patients' lives, A typical measure of rehabilitation in medicine is the patient's resumption of a pre-illness lifestyle and activity pattern. This measure of "health" has permeated the expectations of dialysis practitioners. It expresses itself in the primary injunction "be normal". It is negated simultaneously and secondarily by the frank reality of abnormality that must accompany this illness and its palliation. Dialysis patients cannot be normal. The dietary and fluid restrictions inhibit normal gratification and socializing, urine output can be a many-times-daily preoccupation, asepsis constrains physical activities, gross scarring on limbs caused by cannula are visible and evident. The literature on dialysis summarizes at great length the losses and deficits the patients experience. Moreover, the need to see normalcy of patient behavior is primarily a practitioner need, not a patient need. That practitioners desire to see their patients respond positively to the large manipulations they attempt is understandable: nonresumption of a normal
lifestyle is a direct indication of practitioner failure to negotiate the "whole patient" concept. In order for patients to oblige this practitioner need, dialysis must be perceived as a compartmentalized event, a thing that occurs only three days a week. Paradoxically, practitioner interventions themselves, because they encompass so many aspects of patient life, increase the multiplicative effect of the treatment.
Failure to respond to the directive to be normal leads to the imposition of a third injunction of a primary nature. Patients should at least "be grateful". Hemodialysis is an expensive, intense, difficult service,
Ostensibly its whole motivating principle is to treat people with end-stage renal disease. That such a large and involved enterprise should be mobilized to treat a relatively small group of sick persons is perhaps
sufficient to explain practitioner expectations that patients should at least act "like they are being helped". When patients do not act like they are being helped, we usually see accelerated attempts on the part of
practitioners to help more, or we see rejection of the patient and the emotional abandonment that is the ultimate paradox. Practitioners in the latter state of despair proclaim their helplessness to help, positing a
patient domination and their own submission, while yet maintaining professional superiority and accountability.
These patients are not grateful for obvious reasons. The directive "be grateful" is possibly ironic. The obviously prestigious and financial functions of institutional medical service, and the personal and
professional gains enjoyed by dominant practitioners, counter the directive on one level. The horrendous problems resulting from the disease and treatment counter it on another level. The chronic failure of
patients in this situation to comply with the directives that they be independent and normal leads to pessimism, not to gratitude,
TWO CASES IN POINT
To illustrate the relatively innocuous but uneconomic process of contradictions in a practitioner-patient relation, as compared to the more complex pathology embedded in the relation when paradoxical, two case histories are briefly presented. The first relates a sequence of interactions between a patient from the South Pacific brought to the United States for acute treatment.
This forty-six year old woman was brought to the hospital unconscious, uremic, and diagnosed as in acute end-stage renal failure. No facilities existed to treat her in her area of Oceania. The patient's home
government assumed the cost of tier transport and care, While she remained comatose, the Renal Admissions Committee met to decide the conditions of treatment. Emergency dialysis was provided.
Clara stabilized on dialysis within two weeks. The staff was then confronted with the problem of whether to train the patient for home treatment, in which case she would have to remain in the United States, or to discontinue treatment. If Clara were to stay in the United States, it would be necessary to relocate her husband and three children as well, if she were returned to the South Pacific, she would die. It was decided to bring her family over and to train her for home treatment.
This required arranging for a home for Clara and her family. Clara spoke no English, her husband but a little. Fortunately some cousins of Clara's husband were located near the dialysis center and they moved in. Staff then concerned themselves with checking on, commenting on, the patient's living arrangements, which were crowded and inadequate according to staff standards. The patient and her husband apprehended this criticism and moved with the children into an expensive apartment. The staff reacted
with dismay and sent the social worker to explain that the husband must get a source of income and that the apartment could not be included as a medical expense. The husband then, on counsel of his relatives, applied for public welfare. The social worker learned this would jeopardize their receipt of medical funds from their own country and told him he must get a job. The social worker arranged for job interviews for him. He got a job. However the job interfered with his learning back-up dialysis and translating the training for his wife. Thus training for home dialysis had to stop. The staff was again dismayed. A staff meeting included the following comments:
A. He hardly ever shows up for the treatments. He always has an excuse,
either the job or the kids.
B. These people just cannot comprehend the United States. We just
prolong misery keeping them here, and we've disrupted everything.
We should have sent them back.
A. If she'd died, everything would have gone on the same here, We can't
take care of the whole world. We must do a good job with
those we can reach.
Shortly after this meeting, Clara and her family returned to the South Pacific, where she died within three months. Staff reflected bitterly that her husband was accountable for her death, however indirectly.
In this case, we see the patient and spouse complying almost perfectly to demands imposed or implied by the caretakers, demands which over time were contradictory. Simply, they consisted of injunctions that treatment be accepted, that the family find housing, that the housing was inadequate, that the family find other housing, that the second housing was not acceptable unless the spouse find a job; the spouse found a job. The spouse must also attend the dialysis training, in order that the patient might be treated at home (in the apartment which required his employment). But the job precluded his participation in treatment. The climax of staff frustration was communicated to the patient and her spouse who, in keeping with their compliant pattern, merely did what they were told and went home. However unfortunate, this case is
relatively simple and straightforward, marked by a sequence of contradictions and appropriate responses on the part of the patient and spouse. The second case is not so simple.
Ellen was a single twenty-year old woman, unemployed, living at home with her family. She had been undergoing hemodialysis for two years before receiving a cadaveric transplant. Those two years disclosed the following patient-practitioner interactional patterns.
Ellen was initially treated in the hospital for six months. During the time, family members were trained as back-ups, and she went home for treatment. After seven months at home, her parents refused ambiguously further care for her there. The hospital agreed to permit hospital dialysis on one condition, this condition made explicit to Ellen and her family. She would undergo treatment with minimal help from staff at the hospital. Needle insertion was specified as the only help she should expect. Otherwise she would monitor her own treatment, set up and clean up, and otherwise be independent. Patient and family agreed to the condition.
A pattern emerged almost immediately. Ellen would come on time for treatment, begin to set-up, largely ignoring staff and proceeding in a slow, methodical routine. The staff would have completed setting up and starting nine other patients before Ellen was ready for fistula needles, Often, they would have to wait for her. After discussion in staff meeting, the staff began to help out a little, so as to get her on and off
the machine earlier.
Staff intervention in her treatment gradually increased. Expedience was the reason staff gave. As they increased their intervention, Ellen diminished her independent behavior. As she decreased her
independent behavior, staff necessarily had to become more involved. After a time, Ellen's care and the explicit condition of her hospital dialysis were not discernibly different than the care of other patients. In addition, her attitude toward staff modified. She became somewhat critical of their methods, whereas originally she had tried to show her own competence. She began to come in late and overweight and was generally indifferent to social amenities. Staff discussed her case again, and arranged for vocational testing, hoping to induce Ellen to more independent behaviors if not on the machine, then off. The testing indicated she was of borderline mental ability. She was not normal.
This explained for the staff her slowness in self-dialysis and justified their interventions. It now became a question of whether she was legally competent to self-dialyze in the hospital. If up to this point Ellen had
been indifferent to amenities, she now became hostile. Staff intensified caretaking, Ellen intensified dependent and critical responses, at one point striking a nurse. The content of her verbal exchanges were noted to be increasingly irrelevant and bizarre. The psychiatrist was asked to consult and found her to be having an acute psychotic reaction in response to stress. It is necessary to note, however, that the stress impinging on her was not significantly greater than on other patients, although staff persisted in feeling that she had taken advantage of a circumstance that they had arranged in good faith to help her and her family.
Ellen was then hospitalized, but eloped and was admitted one week later emergently, acutely ill. She was stabilized, treated with psychotherapy and antipsychotic medication and discharged to outpatient dialysis status again. Two weeks later two cadaveric kidneys became available and Ellen was one of four possible recipients. She received the transplant and after a recovery complicated by psychosis, went home. Another well-liked patient received the other graft but died. This indirectly intensified staff anger toward Ellen.
Three years after the transplant, Ellen was functioning well. There were no subsequent psychiatric episodes after discharge. However, Ellen summarizes her hospital dialysis experience this way: "Whatever you do, it's wrong." She wasn't grateful.
This brief case illustrates the progression of a double bind. Independent behavior was both demanded and precluded. Normalcy was qualified by vocational testing, which promoted greater patient dependency following intensified staff interventions. This provoked anger, the antithesis of gratitude, then more dependency, abnormalcy, ingratitude. Once begun, the cycles perpetuated themselves, The caretaking staff were concerned and motivated to do the right things for the patient and none of the cycles
related to specific errors in judgement. Rather the whole situation and the total complement between Ellen and the practitioners constrained alternatives and accelerated a set of symptoms
CONCLUSION AND CORRECTIVES
None of the problems presented here are easily resolved. They arise in the main from the very core of medical caretaking axioms and are merely premises derived correctly from an acute-care tradition now obsolete and inappropriate in the face of a large population of interminably ill people, Effective change requires compatible modifications on the level of perception and then in the structural bases of the care relationship. The changes must emanate from responsible attitude and action on the part of both patients and practitioners. Pathology has been defined here as a consequence of an overabundance of complementarity and control vested in caretakers. It is equally well defined as an excess of passivity and
submission in patients, It should be obvious that the unilateral provision of symmetrical options as a corrective maneuver by health care professionals is in fact another complementary move and therefore not
corrective. It is crucial that this be understood. Practitioners may not, on pain of further paradox, fully control or dictate the correctives.
A health care professional reading and understanding the text thus far will perceive a double bind emerging with the professional on the receiving end of conflicting injunctions. The injunctions are of the
order, (1 ) you are accountable for a therapeutic outcome of your efforts, and (2) your efforts, if you are accountable, are not therapeutic. Fortunately the second assertion is not always true, nor is the first.
But we may not ignore that serious pervading epistemological problems confront our medical and healing traditions.
It is suggested that the initial change must occur on the level of percepts. Practitioners and patients must expand their perception of illness systems to include the nature of relationships and not just the traits and attributes of the individuals engaged in them. Case conferences, staff meetings, patient forums and exchanges are all presently characterized by detailed itemizations of persons' proclivities, symptoms and character, rather than by consideration of the interactive structures that occur in clinical environments. We are conditioned socially, academically and professionally to view cause and effect, stimulus and response, activity and passivity as linear events rather than as reciprocals, Thus we perpetuate complementarity even where symmetry potentially exists. The required change in perception entails unlearning, which is more difficult than learning.
Another initial step in correcting perception is in the redefinition of the social sick role. This requires de-stigmatizing illness while not diminishing the fact of its intrusive and degenerative impact. A society
which mobilizes huge medical enterprises to sustain and nurture its physically deficient persons cannot at the same time condemn these objects as immoral in their maintenance of the sick role. Nor can such a society afford to romanticize chronic illness, nor infantilize those who remain ill. A pragmatics of chronic illness will include a direct non-sentimental accounting of the optimal uses of illness, as well as the costs of illness maintenance.
There is a consistent de-emphasis of patient suffering by practitioners who engage with dialysis patients. Patient pessimism or expressions of hopelessness, anger, defiance, remorse, inadequacy, dependency and ingratitude are met with contest:
Patient: Can't you see that I'm dying?
Practitioner: Oh, now, you are in a bad mood today.
Patient: I don't think I can go on with this ...
Practitioner: You just have to try harder.
Practitioner: What's the matter?
Patient: I'm sick of all this.
Practitioner: You complain about this kind of life? You got a choice ...
... like six foot under.
Practitioner: When the patients feel angry with what has happened to
them, and turn their anger toward the staff, it's really hard
to communicate with them. They feel like we are trying to
kill them, when we are trying to help them. They are like
children. You have to make them see that what we do, we do
to help them.
At the same time, patient optimism is defined as denial. The denial is sometimes seen as therapeutic, sometimes not. Patient optimism is tolerated until it affects their view of necessity of some area of the
treatment regimen. Some patients might feel so much better on dialysis that they decide they need less of it, rather than more. This sort of optimism is not rewarded by practitioners, while optimism that leads to
patient conformity with practitioner standards is consistently reinforced. Suffering is a universal human condition. It needs to be acknowledged and understood, even in a system designed to alleviate it.
While shifts in perception are preliminary to correction, the structure of the health care system itself must ultimately change to permit healthier outcomes. What can be done practically in this interest by practitioners?
A first move is to detach professional rewards from cure and control of patients and illnesses. Professionals in academic settings have long had access to the approval and critical feedback of colleagues and peers and their identity as professionals is not entirely contingent on their success as clinicians. But clinicians without strong effective peer affiliation tend to rely on patient response as the measuring stick for success or failure. In the circumstances we have discussed, this is anachronistic and forces the burden of proof onpatients who cannot provide it. The serious development of professional liaisons and goals, and the support of these by institutions employing and serving health care practitioners, will be corrective. Reciprocally, the development of patient and consumer groups, which suffer the same loss of
relevancy and immediacy of all group processes in terms of the needs of individuals, nevertheless provide patients alternative references and impose on the health care system a symmetrical, albeit sometimes combative, corrective.
A related second step in structural change lies in the depersonalization, the mechanization of the treatment system. The use of audio and videotape devices, graphic and printed materials, instead of individuals in the teaching and maintenance of treatment are anathema to current notions of humanistic care. We noted that reference to ideas promoted by the double bind thesis leads to nonobvious strategies in planning care. It follows from the views above that while much of the treatment must by definition
remain complementary, it does not necessarily have to be conveyed by way of interpersonal relations. Minimizing the interpersonal transactions marked by injunction and control, while retaining efficacy, is the corrective intent. Neutralizing relations of their complementarity can also be done by rotating staff and limiting the one-to-one intimacies and mutual dependencies that tend to develop between individual practitioners and patients over time. Mobilizing patients into teaching, support and modeling roles also serves this purpose. This recruitment of patients has double benefits. It provides a controlled complementary communication route between patients who are primarily engaged in symmetry with one
another, and it gives patients a constructive secondary use for their illness.
Yet this suggestion, like the one to follow, involves risks, expense, and loss of certainty. Minimizing the standardization imposed by the economics of health care institutions underlies each and every potential corrective. A third structural change would involve reexamination of the present tendency to send patients home for treatment, regardless of their idiosyncracies or unique preferences. Home dialysis promotes the usurpation by illness of a non-illness option, the home. It perpetuates the sick role of the patient as a primary identity in the eyes of important others and enlists them in treatment. At the same time, it can permit more patient control and innovation in treatment, leading to a more manageable illness program. Some home patients will admit in confidence that they radically modify the regimen but do not reveal their ingenuities on the records they submit to their practitioners. Patients thus differ in their response to the dictum that they must assume their own care. The care system, having commited itself to a very expensive maintenance enterprise for hemodialysis patients, cannot afford to render it insensitive to the individuality of those it serves.
A final recommendation for correction regards revision of the liability structure of health care. Until patients can be held truly accountable for the consequences of self-care, the imposition of self-sufficiency on them remains an hypocrisy. If in the course of self-treatment in a medical institution a patient makes a damaging or lethal error, it is yet the practitioners who are accountable. A currently litigious public and a
predictably defensive health professional response increase the problem. The ambiguities surrounding liability and responsibility can suffice to entirely sabotage the assumption of self-care and accountability by patients. Involving legal agencies, third party carriers, administrators, practitioners and patients in ongoing discussion with an intent to generate clear explicit guidelines for liable behavior is obviously a
necessary as well as notably absent corrective process.
The rapid advance of medical technology and reliance on institutional medicine by many sick people is resulting in a growing population of hard core chronically ill. Illness maintenance is becoming a major function of our medicine and it is critical that this reality become a proper subject matter for our study. The main message in this article is to the effect that hypocrisy, sham, and the sustained discrepancy in our premises about care and cure are ultimately the most powerful of pathogenics. One may live well with a disease, if its treatment does not require deceit or paradox, One may live equally well with the failure to cure, if one's objective is the maintenance of congruent, meaningful interpersonal communication. If both patients and practitioners maintain congruence as a communicational ethic, they share in the healthiest of symmetrical objectives."
-----------END --------------------
_____________________________________________________
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COMMENTS FROM DIALYSIS MAIL LIST:____________________________________________________
Date: Sun, 27 Apr 1997 07:24:06 -0400
From: "F. Joseph Brown" <This email address is being protected from spambots. You need JavaScript enabled to view it.>
To: Dialysis list <This email address is being protected from spambots. You need JavaScript enabled to view it.>
Subject: Re: Double bind
As a fellow patient at my clinic once told me, and with which I fully concur:
DIALYSIS WOULDN'T BE SO BAD IF IT WASN'T FOR ALL THE BULLSHIT THAT GOES ALONG WITH IT! -Paul Biggi
The doble-bind article is quite apropos, especially in its conclusion:
"The main message in this article is to the effect that hypocrisy, sham, and the sustained discrepancy
in our premises about care and cure are ultimately the most powerful of pathogenics. One may live well with a disease, if its treatment does not require deceit or paradox. One may live equally well with the failure to cure, if one's objective is the maintenance of congruent, meaningful interpersonal
communication. If both patients and practitioners maintain congruence as a communicational ethic, they share in the healthiest of symmetrical objectives."
Simple honesty, compassion, empathy and respect for each other, patients and caretakers, are clearly the necessary elements for a positive experience with dialysis. Of course, this is already essentially laid out in the "Patients' Rights and Responsibilities," which document is commonly ignored. I would like to believe that this situation will be resolved with time, but it is going to require a lot more courageous people taking a stand.
Please take it to heart, and do what you can to make it better.
Frank Brown
_________________________________________________
Date: Sun, 27 Apr 1997 14:43:35 -0700 (MST)
From: Dale Ester <This email address is being protected from spambots. You need JavaScript enabled to view it.>
To: Dialysis Friends <This email address is being protected from spambots. You need JavaScript enabled to view it.>
Subject: Re: Double bind
Message-ID: <Pine.GSO.3.95.970427134551.5922A-100000@pinyon>
MIME-Version: 1.0
Content-Type: TEXT/PLAIN; charset=US-ASCII
On Sun, 27 Apr 1997, F. J. Brown wrote:
> Simple honesty, compassion, empathy and respect for each other, patients
> and caretakers, are clearly the necessary elements for a positive
> experience with dialysis. Of course, this is already essentially laid out
> in the "Patients' Rights and Responsibilities," which document is commonly
> ignored. I would like to believe that this situation will be resolved with
> time, but it is going to require a lot more courageous people taking a
> stand.
Herein lies the question. "ARE patients" ready to congeal themselves with
others to form a blended society of ESRD patients who will readily
acknowledge "they do" have a voice in their treatment and outcomes. We
often complain of caregiver problems which create troubles for ourselves.
But, when engaging this thinking, we may fail to realize many of the
caretaker dilemmas could be diminished if patients took a stand from a
perspective quite opposite from the normal processes.
Ever been in a heated argument? Tempers start flaring? Voices get raised?
Two opponents; each sure their opinion/view is the "only" right one?
Stalemate! No one wins; yet, one can be guaranteed, everyone loses. When a
splitting of deciphered thoughts invokes a hard stand (from either of the
two parties), it is urgent to "listen" to the other view, and in doing
such, can invite "listening" from the other opposed party.
ESRD patients are similarly, for comparison, "married" to their dialysis
treatment, and will remain as such "till death do us part." Divorce is
unheard of, yet it could be compared to non-treatment. Even in death, we
leave the physical world of enduring ESRD. We escaped the physical part of
our discomfort. We leave the displeasures rooted in the subjective mind
to remain with others for the duration of their lives. Nothing is gained,
but everything, again, is lost.
Anger can develop an arrogant opposition which inevitably leads to
"showing the other person" (Center, Caretaker, Social Worker, Dietician,
Doctor, Nurse, Patient, family member, friend) how "right" you you were in
your thought. Nobody likes to be forced to do or accept anything they may
not agree with initially, or may not ever agree with as time moves
forward. Does this insinuate right or wrong? You be the ultimate judge.
I believe the "Patients Rights" may be overlooked at some facilities
because the "and Responsibilities" of the same document are often
overlooked by well-meaning patients. To be treated in a fashion elicited
by the document, takes listening, compromising, and adjustment skills from
everyone involved. The blending of "meeting views" halfway can only but
render an ESRD experience which is better viewed by patients and
caretakers as "understanding" rather than "arrogant and obnoxious."
An "understanding" will open many doors to improvements as effectively as
"arrogant and obnoxious" behavior will shut them. The decision lies in
which path one chooses to follow (or lead others).
A fictitious scenario - Which are you more likely to accept and actually
perform:
"Harold - take out the garbage right now!"
OR
"Harold - Will you take out the garbage for me at your earliest
convenience because the kitchen trash can is really full?"
I think the decision to first engage with fellow patients is to be certain
we are taking the first step by listening. The process can only improve as
we can then make suggestions on equal, neutral ground, to better the
situation thus enacting a status-quo condition which we can all merit in
the proposed changes.
New ideas are hard fought ... and even harder won as it certainly won't
be easy to change the global view. But like sand in an hour glass, it
happens one grain of sand at a time. It has to start somewhere. Are you a
leader or a follower?
These are my opinions. I too, am struggling with the current ESRD
situation. Please don't think I am physically FREE ... but do remember, I
am a free thinker. Changes are part of the evolution of mankind. Be proud
to become part of the solution to make the changes. I know I am.
I posted once before, that I am physically ESRD (End Stage Renal
Disease)". But I am mentally, ESRD (Endeavoring Success Reciprocates
Distinction)".
Simply do with ESRD, what you can do, with respect. And with respect,
will come the necessary changes.
---------------------------------------------
The American Association of Kidney Patients
NEW: http://www.aakp.org
Dale Ester This email address is being protected from spambots. You need JavaScript enabled to view it. Glendale, Arizona
_________________________________________________
Date: Sun, 27 Apr 1997 07:29:32 -0400
From: "F. Joseph Brown" <This email address is being protected from spambots. You need JavaScript enabled to view it.>
To: Dialysis list <This email address is being protected from spambots. You need JavaScript enabled to view it.>
Subject: Re: Double Bind
The question of the cause or causes of the discrepacy in outcomes between the USA and Europe and Japan has been kicking around for many years. The prevalence of short times and reuse in the US have often been cited as probable causes for this discrepancy. However, there is a deeper difference, although usually glossed over and ignored, that is more to the point, and may even be seen as a motivating and justifying factor for the practices of short-timing and reuse themselves.
This factor is the difference in the purpose and object of dialysis treatment. In the main, the object and purpose of dialysis in European countries and in Japan is to return the patients to as normal a level of functioning life as possible. From my experience of meeting European patients, and reading about their treatment, it is clear that they enjoy a far superior level of health and functioning than their American counterparts.
And it is very clear to me, from 20+ years of experience, at over a dozen clinics nationwide, that the majority of American patients do not enjoy a high level of functioning at all, but are merely being maintained at a marginal level which is for the most part barely worthwhile. It is also obvious to me, from my own struggles to improve the situation, that most doctors and clincs that I have dealt with are simply not motivated at all to bring patients to a high level of functioning, and in fact often actively resist and discourage such efforts. This is part and parcel of the 'Dialysis Dogma' that patients are continuously indoctrinated in: one must accept victim status, resign oneself to suffering diminished capacity, refrain from seeking improvement, and be content and non-complaining. This most often results in a mindset of 'learned helplessness,' which inevitably leads to a downward spiral of diminishment and early demise. (This is also sometimes known as 'soul murder').
There have been improvements in isolated places in recent years, and it seems that a growing number of patients are actually doing OK: More power to them (us)! Unfortunately, these changes are far from universal, and the main motivation for dialysis in this country remains PROFIT, with the well-being of patients a secondary consideration, at best.
It has been noted that financial compensation is higher in other countries. This still does not justify keeping human beings in such a detrimental, frustrating and oppressive situation.
Frank Brown
____________________________________________________
> Does the UK discourage dialysis to individuals with other morbidities
> (such as diabetes or heart conditions) and is treatment relatively
> physician determined and even denied to patients (who need dialysis) in
> their elderly years?
This has undoubtedly happened but the study which I referred to compared
"like with like", so the points you make are not really relevant.
Obviously the conclusion would be a bit flaky otherwise! The only point
of difference which appeared to explain the disparity was the wider
tendency to "cut" hours in the USA. I have seen messages on here from
people complaining that their Unit does exactly that - if they can get
away with it - whereas here it would be unheard of.
Long term survival on haemodialysis - wherever you are - depends on
eternal vigilance!
Simon McTighe
(England)
_____________________________________________
........................................................................................................
_____________________________________________
Date: Tue, 29 Apr 1997 16:34:25 -0400 (EDT)
From: This email address is being protected from spambots. You need JavaScript enabled to view it.
To: This email address is being protected from spambots. You need JavaScript enabled to view it.
Subject: Re: Double Bind (316-318) Series 4/7
Dale,
I have read and copied every episode of this series. I agree with all of the
other replies you have received. This scores a direct hit on ESRD.
I had distributed "The Marginal Man" to the staff of my clinic and it is now
required reading for all staff and new hires. This is without question the
sequel.
"Marginal Man" (read it at: http://www.aakp.org/man.html)
Mike
___________________________________
Date: Sun, 27 Apr 1997 10:57:24 -0400 (EDT)
From: This email address is being protected from spambots. You need JavaScript enabled to view it.
To: This email address is being protected from spambots. You need JavaScript enabled to view it.
Subject: double bind/insurance companies
My clinic is quite a bit more up to date than what you describe as your
experiences. Our nephrologist constantly struggles against the limitations
that insurance companies and Medicare puts on dialysis programs and all the
necessary and various medicines , bloodwork, etc. we each have to have in
order to survive.
I've noticed, at least here, it is a much more "money driven" problem than
just ignorance or neglect. T he doctors and nurses themselves are caught in
that "double Bind" ..they want to motivate us, make us as well as
possible..but then the "for profit" h ospitals and even the non profits are
governed by how much money they can make off of insurance . And Insurance
companies are getting "tighter and tighter" as the country switches more and
more to so -called "cost saving" HMOs.
Well, you all know what that means.... we dialysis people are the nightmare
of for profits. Expect to get your staff slimmed more and more in the next
few years. Our country hasn't awaken yet to what is going on. Until the
more comfortable middle class starts losing their good insurance plans and
they get sick and wonder why they lost all th eir possessions and finally
drifted down to what many of us have already bottomed out to(poverty), the
general public frankly won't give a hoot, or start complaining to the
government that this current direction is taking us back to third world
status medically.
.......................................................................................
Date: Sun, 27 Apr 1997 18:41:52 -0400 (EDT)
From: This email address is being protected from spambots. You need JavaScript enabled to view it.
To: This email address is being protected from spambots. You need JavaScript enabled to view it.
Subject: Re: Double bind
Bravo Dale! May all the ESRD clients become empowered. We may be
"Marginal", as described in the "Marginal Man", but we still have a voice,
brains and our individual personalities.!!
Onward and upward!!!!!!
________________________________________________
Date: Mon, 2 Jun 1997 02:30:46 -0400
From: "F. Joseph Brown" <This email address is being protected from spambots. You need JavaScript enabled to view it.>
To: Dialysis list <This email address is being protected from spambots. You need JavaScript enabled to view it.>
Subject: Double Bind Revisited
Thanks again to Dale Ester for posting the Double Bind article. Here are a
few related comments.
On 27 April 1997, Dale wrote:
--------------------------------------
>Herein lies the question. "ARE patients" ready to congeal themselves with
>others to form a blended society of ESRD patients who will readily
>acknowledge "they do" have a voice in their treatment and outcomes. We
>often complain of caregiver problems which create troubles for ourselves.
>But, when engaging this thinking, we may fail to realize many of the
>caretaker dilemmas could be diminished if patients took a stand from a
>perspective quite opposite from the normal processes.
..................
>I think the decision to first engage with fellow patients is to be certain
>we are taking the first step by listening. The process can only improve as
>we can then make suggestions on equal, neutral ground, to better the
>situation thus enacting a status-quo condition which we can all merit in
>the proposed changes.
Well, Dale,. I don't think there is going to be any great union of dialysis
patients making a stand for rights and proper treatment. The typical
reasons are: isolation; lack of energy, support, and knowledge; fear of
reprisal, and, especially, defeatism already inculcated by the medical
establishment. But why should such a mass movement be necessary?
It's an overwhelming burden just to begin and get used to all the difficulties
of dialysis, without expecting patients to take on the task of reforming the
entrenched and pathogenic social dynamic in the clinics. Patient Rights
and Responsibilities have already been legislated and codified in Federal
statutes, and thus are to be fully recognized and taken for granted before
any patients even come in the door. They are not something to be
negotiated for or withheld for any reason, let alone at the whim of the
staff.
Your suggestions of 'listening' and 'understanding' are well taken.
However, the 'equal, neutral ground,' is difficult to find. I think that
most people, including dialysis patients, tend to be reasonable and
respectful when trying to solve a problem, and will give the other party
the benefit of the doubt, up to a point. It is only after repeatedly being
ignored, rebuffed or put down, that the average person will begin to get
angry and / or 'hostile'. Unfortunately, this is the scenario that so
often prevails in the clinics. As shown in the article, there is a massive
power imbalance wherein the patients are relegated to an inferior status
relative to the staff or other non-patients. Consequently, any complaints,
however expressed, will customarily be disregarded as trivial, symptomatic
and invalid. That is enough to infuriate anyone. Anger, of course, is
interpreted as arising solely as a reaction to the necessity of dialysis!
That is as arrogant an example of projection that one is ever likely to
see, but is so common as to seem almost a cliche'.
Unfortunately, most members of our society have been fully trained, mainly
through the school system, to be passive and obedient to any authority, and
certainly not to make waves or cause trouble. Thus, the majority of
patients are reluctant to stick their neck out and risk censure or
punishment by challenging the established order of the clinic. This makes
it that much harder for those of us who do resist detrimental and inhumane
treatment.
I hope that some improvements will be initiated through the dissemination
of this article. We all certainly have the responsibility, and the right,
to participate in effecting the best outcomes. The onus is primarily on
the dialysis corporations to ensure a beneficial psychological atmosphere
in the clinics, as well as technical adequacy. This should also be the
purview of the social workers, to act as patient advocates by forestalling
any tendency to dysfunctional dynamics. The relevant government agencies
must also guarantee patients' rights, by being fully available to intervene
when necessary, without delay. One simple solution, already in place in
some clinics, is to have a patient hotline 800-number posted. This alone
will give us a voice and a recourse if things are not as they should be.
Frank Brown
##########################################################
DOUBLE-BIND CHART
Description of Stages in the Pattern:
STAGE- EVENT EMOTIONS FUNCTION DESCRIPTION
1. Problem Anxiety Question Fear
2. Agreement Trust Solution Safety
3. Identity Crisis Confusion Mind-Bind Ambiguity "Yes, but...."
4. Reversal Guilt/Fear Rape of Mind Double-Bind:
<Damned if do. Damned if don't.>
5. Denial Humiliation Blank-out; No-Mind Dehumanized:
<"Yes, but no, yet is.">
6. Accusation Guilt/Shame Binder projects his guilt. Demonized:
<"Not I, but you...">
7. Punishment Helplessness Compulsion - Subjection Punished for being punished
"See black as white.">
8. Bound Love/Hate Brain-washed "Voluntary" Union
9. Death Suicide Numb/Death of feelings/Dumb Death of the mind. <Psychological cannibalism>
\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\\
A Brief Outline of The Pattern:
1.A problem............Anxiety
2.An agreement.......Trust
3.Identity Crisis.......Ambiguity: "Yes, but"...
4.Reversals..............Double-Bind: Damned if you do, and damned if you don't.
5.Denial...................Obfuscation: "Yes, but...No ... Yet, IS."
6.Accusation............Binder's projection of his own guilt: "Not I, but YOU, are guilty."
7.Punished for being punished:......"You CHOSE, not I." ... " I punish you for your own good."
8.Bound...................Love/Hate, depression ...."Voluntary union."
9.Death....................Numbness, withdrawal, possible suicide.
---------------------------------------------------------------------------------------------------
.....................from the INTERNET
#

Better Health Through Better Dialysis
Content copyright 2005 Arlene Mullin

DIALYSIS IN THE USA

DE logo

In recent medical studies, it has come to light that people receiving
dialysis treatment for kidney failure in Europe experience, on average,
better health with fewer complications and longer life expectancy than do
their American counterparts. There are a number of possible reasons for this
discrepancy, such as differences in patient populations and in treatment
procedures, but the most significant seems to be the difference in the
respective goals of treatment.

In Europe, the goal of dialysis is rehabilitation. Patients are expected
to do well and to return to normal lives, and their doctors are not satisfied
until they do. In the United States, however, the goal often seems to be
merely to keep patients alive, without any serious ongoing attention to
rehabilitation or quality of life. Might this great difference in intentions
and expectations be the deciding factor in the difference in outcomes?

Bernie Seigel, M.D., Deepak Chopra, M.D., and others, have written about
the influence that expectations of doctors and medical staff have on patient
outcomes. Their thesis is that since patients tend to conform with their
doctor's expectations, performing up to, or down to, those expectations, it
is a doctor's solemn responsibility to convey as positive and hopeful an
outlook as possible to assure the most beneficial outcome. A recent study in
Clinical Psychology Review on the 'placebo syndrome' clearly shows that
belief in a particular outcome can be as strong a determinant as any
medication. Indeed, is it really any surprise that low expectations lead to
less than optimal outcomes?

Dialysis in the USA has become by default a kind of limbo, and the
experience of patients, while fraught with difficulty, is rarely allowed full
expression or resolution. Instead, patients are expected to be 'nice' while
being treated as little more than items on an assembly line. The prevailing
attitude of doctors and staff at many clinics is that of denial: that the
situation is so bad that it must not be dealt with. The corporate owners,
usually far removed from the clinics, tend to make treatment decisions based
on short-term profitability, often to the short-term and long-term detriment
of their customers well-being. Although patients become inured to the idea
of having to dialyze, and would be more than happy to get on with worthwhile
lives, they are held back by a system that regards them as permanent invalids
with one foot in the grave.

It seems that aversion to the idea of dialysis is the stumbling block
preventing further investigation of solutions to dialysis-related problems.
The common perception is that dialysis is an awful burden which it is
impossible to do anything about. Great pains are taken to impose this view
on the patients, with regular negative reinforcement: in combination with
the treatment, it is an effective form of brainwashing. This defeatism
inevitably colors treatment decisions, and leads to a poorer quality of life
for all concerned.

I don't think that kind of mentality is appropriate in any medical
situation. There may be no cure per se for kidney failure, nor is there a
cure for blindness, amputation, paralysis, or brain damage. However, the
general trend in all these other cases is to overcome the disability and
return the person to a full and worthwhile life, regardless of the obstacles.
What makes dialysis so different? Is it the machine? Is it the blood?
What is it? I think it is a self-fulfilling prophecy.

The time is overdue to re-examine our priorities and re-establish the
dialysis program on a solid basis of the optimization of the quality of life
of each individual dialysis patient. When that becomes the standard of care,
we will also see the optimization of outcomes: patient satisfaction,
rehabilitation, and longer, healthier, more productive lives. That is what
the system was intended to produce, and that is what we are paying for.
Let's do what it takes to make it so.


April 15, 1994
Better Health Through Better Dialysis
Content copyright 2005 Arlene Mullin

OUR DIALYSIS POLICIES ARE DISASTROUS


DE logo
Robert N. Sollod, Ph.D.

More than 35,000 people are dying unnecessarily every year in a government subsidized and monitored program. These are dialysis patients subsidized largely by Medicare. How is this number derived? The typical mortality rate for dialysis in industrialized countries is about ten percent on average. The US dialysis death rate is more than twice as much - currently twenty-two percent. Our deaths are over 65,000 a year instead of the 30,000 that would be the case if our death rate were the same as Italy's, France's, Germany's, or Canada's. America is an outlier in dialysis mortality in the industrialized world. For most of the 1990s, the situation was even worse - with a US mortality rate of twenty-five percent a year.

It is not easy fully to appreciate this high an incidence of mortality. It is worse than all but the bloodiest military service. The average life expectancy of a dialysis patient under current circumstances is only around three years - less than the life of most household pets. About 17,000 Americans each year are homicide victims. The 35,000 unnecessary deaths each year from dialysis treatment are twice the number of homicides and equivalent to US homicide and drug-related deaths combined.

What is the main reason for our unacceptably high death rate? It is the overall inadequacy of American dialysis - both in terms of quality and quantity. Given Medicare reimbursement policies, such an outcome should be no surprise. Payments for dialysis are fixed. There is no reward for more dialysis or for better dialysis. There is no reward for reducing mortality nor penalty for more deaths. Medicare does not provide funds for patient education or for technician training. There is no incentive for dialysis centers to provide services to help keep patients working so there is little or no effort spent in this direction in most centers. Improved quality of service leads to a decrease in the bottom line. Patient or "consumer" choice is limited, too, as mortality rate statistics of specific centers have not been required to be made accessible to prospective patients.

Many referring physicians are partners of profit-making centers - an apparent conflict of interest. Other conflicts of interest occur, as well. It appears that more dialysis and administration by subcutaneous injections reduce the need for an expensive genetically engineered medication, epogen. Th Medicare dialysis program spends over a billion dollars a year for this medication. Dialysis centers receive a cut of this money as does the drug company, Amgen. So it is not surprising that there has been little emphasis on reducing costs by increasing dialysis time or by encouraging subcutaneous injections of epogen.

Recent Senate hearings chaired by Senator Grassley concluded also that there was a lack of government oversight of dialysis centers. Only ten percent of centers are reviewed each year. Some centers provide excellent care, but others are usually unmonitored death traps. Centers with death rates of over fifty percent a year are allowed to continue functioning without
changing their procedures.

The number of unnecessary deaths caused by inadequacies in our treatment of dialysis is hundreds of times more than the loss of life caused by defective tires. It is a continuing problem. And this does not include the unnecessarily limited quality of life and unnecessary medical complications suffered by dialysis patients. With the increase in the elderly population and the rise in diabetes, we can expect more and more of us to require dialysis or to have a family member or friend on dialysis.

Our dialysis policy is having devastating results. Now is the time to demand a change in public policy to promote the well being of dialysis patients rather than simply maintain them at a precarious level of survival.


Robert N. Sollod, Ph.D.
216-523-7266
Professor of psychology at Cleveland State University
I have been a dialysis patient for five years. I have published in dialysis journals, contributed to the recent Senate hearings and presented to health care providers on the experience of patients.
This email address is being protected from spambots. You need JavaScript enabled to view it.
216-523-7266
Department of Psychology
Cleveland State University
Cleveland, OH 44115