“The Chronic Patient”: In Search of a Title Leona
Dr. Bachrach is research professor of psychiatry at the Maryland Psychiatric Research Center of the University of Maryland School of Medicine in Catonsville. Address correspondence about this column to her at Hospital and Community Psychiatry, Amencan Psychiatric Association, 1400 K Street, N.W., Washington, D.C. 20005.
“case management,” “networking,” and “community support,” although not necessarily new, are far more common today in service planning than in the past. In many instances, such terms have essentially replaced older concepts. In this decade we are more likely to speak of “long-term residential care” than of “custodial care.” Individuals who are admitted to state mental hospitals are rarely called “inmates,” although that was not an uncommon designation several decades ago. The terms “homeless” and “dual diagnosis” have taken on changed connotations as new challenges in patient care have come to the fore. To note these changes is not, however, to imply consensus. That certam terms are widely used does not necessarily mean that everyone defines them the same way or that they are universally accepted. Today’s most popular service planning concepts typically suffer from the absence ofshared definitions, and some ofthe most heated arguments among planners and providers imply major semantic differences (2-4). Even the language used to describe the individuals being served has been changing and has generated considerable disagreement. In 1976 I referred to the persons most affected by the policies associated with deinstitutionalization as “chronic mental patients,” whom I defined as “those individuals who are, have been, or might have been but for the deinstitutionalization movement, on the rolls of long-term mental institutions, especially state hospitals” (1, p. 11). I recall no objections to my choice of terminology at that time. However, the limits of semantic tolerance seem to have shrunk since
In 1976 I wrote the first edition of Deinstitutionalization: An Analytical Revie-wandSociologicalPerspective(1), a monograph that sought to sort out and conceptualize the many issues related to implementing a new philosophy of patient care. Since then, deinstitutionalization in its various manifestations, including its relationship to homelessness among mentally ill persons, has remained my major academic focus. The problems I discussed in 1976 have not been fully resolved, and serious new issues have arisen (2). The fact that substantial benefits have also accrued to many patients does not diminish those problems. As deinstitutionalization has evolved, new concepts and practices associated with service delivery have emerged, and a growing literature continues to catalog and assess their impact. It might be said that the major purpose of this column, The Chronic Patient, is to provide a means for documenting and disseminating new patient care strategies and the concepts underlying them. Change has also affected the language associated with deinstitutionalization. Words like “outreach,”
1976. More than one reader of Hospital and Community Psychiatry has in recent years suggested to me that the title ofthis column should be viewed as obsolete at best and as intensely demeaning at worst. For one thing, objections have been raised about lumping together, under the umbrella term “chronic patient” a heterogeneous population whose members differ dramatically in their diagnoses, symptoms, functional levels, treatment histories, and prognoses. This is a thorny problem, to be sure. On the one hand, we need terminology that enhances and facilitates policy development and service planning. For this task, a shorthand title like The Chronic Patient with its inclusive language is generally appropriate, even though it fitils to provide clues to the richness and cornplexity ofthe patient population. On the other hand, grouping together diverse and unique individuals in a manner that ignores individuality is surely, in some sense, a denial of their personhood. As a title, The Chronic Patient fosters this kind of homogenization, although that is certainly not its intent. However, most of the expressed dissatisfaction seems to center on the very words that constitute this title. J ust as the word “patient” has for some time come under attack in the mental health field (5,6), so has its use here been criticized by persons who feel that it leads to interdisciplinary conflict and also polarizes peopie who provide and receive services. However, arguments over the word “patient” appear to be subsiding somewhat, at least in some quarters. In a recent address to the World Association for Psychosocial Rehabilitation, Judi Chamberlin (7), who is internationally known for her advocacy efforts, referred to “former patients/psychiatric survivors/mental clients/consumers” and asked her audience to “note the multiplicity of terms.. [as] there is no single term we are all comfortable with. We choose to call ourselves by many different names. I prefer to call myself a psychiatric survivor.” Indeed, the old argument over the use of “patient” seems to have lost steam and given way to another more .
intense controversy over the use of “chronic,” both as an adjective and a noun. As for the latter, resistance centers on the unfortunate practice of referring to mentally ill people as “chronics,” or, even more, on the disturbing tendency of employing the popular acronym “CMI” (chronic mentally ill) as a noun. Blaska (8) views this usage as profoundly dehumanizing and stigmatizing and feels that it strips patients of their human identity and individuality, a sentiment with which I am in total agreement (9). In its adjectival form, “chronic” is apparently somewhat less offensive but stilldistresses many individuals who feel that even as a simple modifier, it suggests hopelessness and invites stigma. We should acknowledge certain advantages in using the word “chronic” in the title ofthis column. For better or worse, there is merit in employing language that has currency, and there is at least a common core of understanding of which patients are covered. Most definitions of the term refer to individuals who suffer from major mental illnesses, who experience severe disabilities as the result of those illnesses, and who may be expected to endure those disabilities for long periods oftime, possibly for life. Moreover, attempts are under way to standardize the criteria for establishing chronicity (10). Beyond this, the word “chronic” may have some value in establishing the rights of patients to certain entitlements (11), since it is conceptually consistent with other language used to determine the eligibility of individuals for medical and disability benefits. Yet dissatisfaction with “chronic” is widespread and intense and is probably felt most deeply by current and former patients. In a letter written to me last year, Thomas Posey (personal communication, December 26, 1991), a past-president of the National Alliance for the Mentally Ill and himself a former patient, objected strenuously: “I have stated over and over again that I would rather be referred to as ‘crazy’ or ‘demented’ than chronic. Of all the pejorative terms used to describe those of us with a mental illness, I
find ‘chronic’ to be the most demeaning. In a majority of the discussions that I have had on the subject, chronic is always equated with hopeless.” Another former patient, Dian Cox Leighton (1 2), has written: “Being called ‘chronic,’ as I was, was killing. It made me so helpless and hopeless. It made me want to give up. It’s interesting to note that after I made what they then described as ‘a miraculous recovery’ from the more severe aspects of my illness, these same doctors said I had not been schizophrenic after all. Yet I had been labeled that way-chronically soand given up on.” Service planners and providers have an obligation to respect the feelings expressed by these and many other individuals. The painter Maureen Mullarkey (13) has placed their plea in perspective by reminding us that “words, after all, are not value-free. Our word choice bears witness to what we esteem, what we tolerate, what we fear or disdain. It matters, then, what we choose to call something. It also matters what words the culture makes available to us, or denies us, for the shaping of our choices.” It is with Mullarkey’s last point that particular difficulties arise for me. Even as I acknowledge that the title The Chronic Patient is painful to many of those whom it describes, and even though I have searched for adequate alternatives, I fear that our culture and language give us few choices. Substitutes have, of course, been proposed, but they offer little if any improvement. The adjective “long-term” acknowledges the durational aspect of “chronic” but somehow does not, in my judgment, convey the sense of severity of illness. On the other hand, “serious” implies severity without persistence. And the unwieldy “severe and persistent” is cumbersome to use and invites invidious acronyms (9). In short, I can think of no alternative title that conveys so succinctly the sense of the several characteristics that have come to be associated with the adjective “chronic”: the existence of severe mental illness whose disabling effects tend to persist over time. What is needed is a term spe-
cific enough to cover these variables but neutral enough to overcome the perceived negative effects of “labeling.” I know ofno such term. Should the name ofthis column be changed? Much as I should like to recommend doing so, I have been unable to suggest an alternative title. I would, however, welcome cornments from readers who feel they have viable solutions for my dilemma. Please write to me in care of Hospital and Community Psychiatry. Communications will be shared with the journal’s editor, editorial board, and staff, with whom the decision for change ultimately rests.
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