Label Jars Not People

I saw a client for psychotherapy, an astrophysicist, one of those incredibly bright people who live in a different intellectual domain. Somehow we got to talking about weather prediction and he explained the impossible probabilities of accurately predicting weather for more than a week. He told me that we have sharply decreasing ability to accurately predict after several days and then it gets progressively tougher when the period of time is longer. He asserted that even with anticipated futuristic advances in technology, the number, complexity, and changing dynamics and interaction of the involved variables make long-range predictability inaccurate. With the above in mind, are we not being arrogant to assume that we are capable of predicting, many years into the future, the actions, precise development, and limits of recovery for an individual? I choose to believe that the human spirit rivals the weather in complexity.

In this commentary I express opinions based on my experience as a person who was diagnosed with schizophrenia, hospitalized twice for 13 months, and my subsequent 40 plus years of work as a psychologist, rights activist, and psychiatric survivor.

I had to overcome two diagnoses, the first “schizophrenia, paranoid type” and after a second hospitalization the damning diagnosis, “schizophrenia chronic type.” I came to understand that in order to pursue my goals and dreams, I had to hide my psychiatric diagnosis for 20 years. My work as a psychologist along with my lived experience has taught me that the demands of following the principles of the medical model propel practitioners into burrowing deeper and deeper into a rabbit hole in pursuit of a reliable and valid nosology. “Label jars not people,” the slogan (mantra) of the consumer/survivor/ex-patient movement of the 1970s, trumpets the inherent harm generated by a diagnosis that too broadly defines one’s identity and gives rise to inaccurate limiting predictions. Who among us has not heard people introduce themselves, not by name but as I’m bipolar, schizophrenic or borderline? It is disturbing to see how many accept that their diagnoses describe who they are and who they will always be. Apropos to a commentary directed at exploring an alternative to the use of the DSM is the title of the 1980 book written by Ted Sarbin and my old friend, Jim Mancuso: Schizophrenia: Medical Diagnosis or Moral Verdict (Sarbin & Mancuso, 1980).

The article, Can There Be a Recovery-Oriented Diagnostic Practice, evokes provocative questions that demand careful consideration. Foremost is whether the use of diagnoses in the mental health field is capable of being more helpful than harmful. Can new diagnostic methodologies overcome the historical biological disease–based foundational principles of identifying disorders? Can developing a recovery-oriented diagnostic model meet the needs of a fiduciary system that requires: names and categories to justify treatment services and eligibility for disability funds, and also support the use of randomized controlled trials as the gold standard for research?

The goal of developing a recovery-oriented diagnostic practice is admirable, but it is necessary to evaluate whether any form of diagnosis can overcome the basic damage that such labeling creates. A definition of diagnosis from the Medical Dictionary is “The art and science of identifying the disease causing a particular set of clinical signs and symptoms. Differential diagnosis is the selection of one from a list of diseases that present in a similar way [italics added]” (Medical Dictionary, n.d.). In the article under discussion, emphasis is placed on understanding an individual while applying 10 core principles to developing a narrative that can become the foundation for the provision of therapeutic services. This model provides an excellent means of describing who and where the person currently is through exploring one’s history and future aspirations. Underpinning this approach is seeing a dynamic, rather than static individual to be assessed within a life context. My question is whether a label would be needed for this model in order to justify treatment, and whether that label would acquire undue power and be too influential in designing services for a unique individual. The fundamental question: Can any diagnostic system overcome the Othering of people that is endemic to psychiatric classification?

The use of core principles developed collaboratively to assess and describe the individual’s history, struggles, strengths and weaknesses are valuable in certain instances. Weaknesses are apparent when such narratives are attempted with people in situations that are not conducive to collaboration, that is, involuntary treatment, or for those who do not share the values, principles, or reality of the examiner.

Creating a narrative, a life story, is an improvement over the current use of diagnosis. It is a good beginning but needs a fuller examination of underlying assumptions. What is described in the paper are useful principles in getting to know a person. However, again, why do we need to use this process for establishing a diagnosis? Any evaluative process formulated to become a diagnosis ends up being names that too many people accept and adopt as their identity.

The proposal to use the authors’ 10 principles would be a major improvement over the use of decision making trees in diagnosis. A constructed narrative communicates a much greater potential for developing a viable treatment plan than the historic uses of diagnosis. Such narratives may be, when flexibly used, a good introduction to developing the initial encounter and relationship between the client and interviewer. However, I see limitations, which I hope will not discourage the further development of the authors’ efforts, but rather bring a broader understanding of the process that they have initiated. Diagnosis usually takes place in a setting where the denial of rights generally hover menacingly nearby. Years ago in a personal conversation with Thomas Szasz, he told me that psychiatry lost its way when it became an arm of the state and forfeited absolute confidentiality. When attempting to find an alternative to diagnosis, it must be recognized that diagnosis in our less than ideal world justifies the use of power to control the lives of people who are struggling. “When the principles and needs of treatment, rehabilitation, punishment and government are enmeshed and only separated by thin porous membranes, the loss of opportunity is the fate of many citizens.”

Before looking at the principles, it is important to recognize the different motivations that distinguish what brings someone into the patient/client role. When working with people who are judged “seriously mentally ill,” a key factor meriting consideration is whether genuine informed choice is present. Forced entrance into treatment or even subtle coercion to seek help will color how potential services are approached. Will the providers of services be regarded as helpers or enforcers? Will the inequalities of power and personal agency be ignored or be candidly addressed? Consistently in institutional settings when I relate more as a person who was once a hospitalized patient rather than as a psychologist, I hear complaints that conclude with some version of the statement, “I may be crazy, but I’m not stupid.” Many psychiatric survivors believe that when one takes on the role of mental patient he or she is branded for life, and is destined to be the object of social prejudice and community exclusion. The authors of the article “envision the clinical interview as an open, transparent, and egalitarian dialogue between clients and providers.” The extremely difficult task of transcending the barriers of us and them identities cannot be ignored and must be understood within a context where there is a potential loss of rights.

Essential to the construction of psychological formulations as an alternative to diagnosis is an understanding of how the words diagnosis, illness, and recovery are inextricably linked and foundational to the current practices of mental health professionals. The identification (diagnosis) of an illness and development of a treatment plan for recovery is a curious endeavor. Is there an illness or disorder that resides within the individual? Does recovery literally mean a return to a higher functioning state of one’s past or is it more meaningful to seek a transformation into a higher level of being? Principle 8 of the authors’ article offers a valuable methodology for understanding an Other. “Symptoms are understood as meaningful efforts at survival and communication based on life history, and inclusive of the effects of overt and subtle trauma. In other words, behaviors are meaningful when viewed in context.”

Among the 10 principles, Principle 2 causes the most dissonance. “The diagnostic process should be collaborative and the resulting diagnoses should be useful in helping the client and provider work together.” Collaboration to assess and describe an individual’s history, struggles, strengths and weaknesses are essential. However, given the power imbalance along with differing motivations, can genuine and equal input be possible? Yet any improvement in collaboration, despite the impediments, is worthwhile.

All the principles, if adhered to, or even if merely considered, offer valuable grist for mental health professionals when relevant to their clients’ needs and the settings in which treatment services take place. Similar to any principle or rule, its application must resist being used as a rigid template because of workplace time demands and/or the need to meet reimbursement criteria.

Today, the field of medical practice has begun to recognize the importance of physician patient relationship, attitudes and environment as they relate to healing and recovery. Yet medical insurance requirements for reimbursement continue to dictate too much of how medicine is practiced. Historically, the psychotherapy relationship was primary in working with people experiencing disturbing nonordinary mental states. The mental health field in its attempt to be scientific (physics envy) like their distant cousins, physicians, have let slip their unique strength—relationships. Emerging now, along with the importance of relationship is the impact of environment, culture, ethnicity, race, poverty, and trauma.

Diagnosis is antithetical to a recovery oriented practice. The principles that the authors’ advocate are too often incompatible with the needs, motives, demands, and settings that affect and direct how the professional conducts the initial evaluation. We must not blithely ignore our very human limitations in truly knowing an Other and continue to make predictions that limit a person’s choices and relegate he or she to an all-encompassing identity of mental patient. Diagnosis cannot escape the trap of prejudging. The developed narrative can be better used as a psychological formulation as opposed to being a diagnostic report. Eliminating an association with diagnoses allows for more flexibility and less reliance on following a template. It would more simply function as a description of the individual that could be regarded as a starting point for treatment services. The 10 principles would be an excellent educational tool for training aspiring mental health professionals. And perhaps be helpful in developing rapport and serve as a positive introduction to services in some treatment settings.

How to create a more genuine collaborative process demands more qualitative, and/or mixed methods research. Given the financial demands for accountability and community attitudes toward mental illness, it remains difficult to implement creative treatment services. Critically important is understanding the necessity of establishing trust in service systems where power imbalances, the use of force and the denial of rights are pervasive.

John Stuart Mill’s classic essay On Liberty, published in 1859, confronted a question that remains unresolved to this day: In a democratic state, how can the individual be protected from the tyranny of the majority? Mill based his essay on one simple principle, which stated,

. . . that the sole end for which mankind is warranted, individually or collectively, in interfering with the liberty of action of any of their number, is self-protection. That the only purpose for which power can be rightfully exercised over any member of a civilized community, against his will, is to prevent harm to others. His own good, either physical or moral, is not a sufficient warrant. He cannot rightfully be compelled to do or forbear because it will be better for him to do so, because it will make him happier, because, in the opinions of others, to do so would be wise, or even right. These are good reasons for remonstrating with him, or reasoning with him, or persuading him, or entreating him, but not compelling him, or visiting him with any evil in case he do otherwise. . . . In the part which merely concerns himself, his independence is, of right, absolute. Over himself, over his own body and mind, the individual is sovereign. (Mill, 1859/1975, p. 10).

To truly be of service to people who would benefit from assistance, it is essential to be open and not be driven by preconceived notions of what a particular individual wants and needs. When the clinician ignores the fact of uncertainty, he or she will come to rely on stereotypes and an effort will be made to fit the behavior into a socially defined and seemingly meaningful compartment.

Diagnosis explicitly and implicitly directs us to roughly file away what distinguishes us as individuals so that we may fit in the Procrustean bed we loosely call “mental health.”