What is schizophrenia?
Schizophrenia is known as a chronic disease. The common interpretation of a chronic disease is a disease that never heals. In part this is true for schizophrenia. After five years more than 50 percent of patients still show impairment, persistent psychotic symptoms and several relapses (Shepherd, Watt, Falloon et al., 1989). Within the course of five years 80 percent of people with schizophrenia have experienced at least one psychotic relapse (Robinson, Woerner, Alvir et al., 1999; Birchwood, 2000, p. 39). This illness destroys the lives and expectations of many young people and their families.
The first psychiatrist who described schizophrenia as an illness entity in its own right was Kraepelin in 1899 (Kraepelin, 1999). He saw the unfavourable course of the illness as its main aspect. Kraepelin did not speak of schizophrenia but of dementia praecox, which he considered an appropriate description because it concerned an early (praecox) decay of the mind (dementia). It was the Swiss psychiatrist Bleuer (1908) who coined the term schizophrenia. Bleuer had had a lot of experience with people with schizophrenia, with whom he related in a personal way (Hell, 2001). His sister suffered from a severe psychoticdisorder, which was the original reason for his choice of profession (Hell, 2001). He made itclear that in schizophrenia there is no question of the extinction of the human mind but that there is an inner, personal life that leaves much to be understood.
The literal meaning of chronic is ‘time’ (chronos) or ‘in time’. That is another aspect of schizophrenia: it is an illness that evolves over time. Several long-term follow-up studies around the world have demonstrated that schizophrenia is not the deteriorating disease that was once imagined (Bleuer, 1972, 1978; Ciompi & Müller, 1976; Huber, Gross & Schütller, 1979; Harding, Brooks, Ashikaga et al., 1987a and b; McGlashan, 1988; Kua, Wong, Kua et al., 2003). Although there are many questions left to be answered we do know that there is considerable variety in the long-term course and outcome, and that, except in ten percent of cases where the course of the illness leads into a severe state, recovery is possible.
Schizophrenia is an illness that fills one with modesty. ‘With the current mix of interventions we can only reduce 13 percent of the burden. If we improve efficiencies within the current services, we can do somewhat better (22 percent)’ (McGrath, 2005, p. 9). There is no treatment we know of that can definitely alter the natural long-term course. There are many explications of schizophrenia. These range from a purely biological interpretation of schizophrenia as ‘a disabling brain disorder’ (McGrath, 2005, p. 9) to political, mainly ‘antipsychiatric’ explanations which state that ‘there is no such thing as mental illness’ (Shorter, 1997, p. 275). In between we find psychological, interpersonal and socio-cultural explanations. To explain something is one thing, to understand another. There are many metaphysical and psychological explanations that are at odds with the tremendous suffering caused by a serious mental disorder (Rasmussen, 2001).
Jaspers (1912a, b, 1969, 1973, 1974, 1997) made a distinction between Verstehen (to understand) and Erklären (to explain). Verstehen means ‘to bring as precisely as possible to mind (Vergegenwärtigung) what the patient feels and is aware of’ (Blankenburg, 1980, p. 55). Interestingly Jaspers (1973, p. 483) thought that many people with schizophrenia were unverständlich (incomprehensible). With his phenomenological approach however he introduced a very important element in psychiatry, verstehen, which ‘requires a more intimate mode of experiencing, a willingness to identify, in short: empathy’ (Blankenburg, 1980, p. 55, original emphasis). Jaspers (1997, p. 778) criticized ‘metaphysical interpretations of illness’, he states that ‘the fact of the psychoses is a puzzle to us … by interpretations man reassures himself about this really unbearable fact’.
Dave was presumed to have a severe conduct disorder. His parents were advised to take on a ‘consequent attitude’. But when Dave stood before a locked door at 3 a.m. he broke the window and just stepped into the house. His bizarre behaviour was seen as related to his abuse of drugs. It escalated. He thought that his mother put poison on his pillow. He was afraid to eat his sandwiches at work. In conversation he started sentences that led nowhere. At night he visited the churchyard, lit candles and cried in the dark. He was involuntarily committed. He spat in my face when he was taken away by ambulance. Once in the hospital it became clear how sick he was. The antipsychotic medication made him calmer, but the spirit was gone. He turned completely inside himself. Mother did not recognise her own son. There was nothing left of her unmanageable, aggressive boy. But for years he continued to fight his voices. He responded to his voices like a wild animal. ‘Piss off’, he begged and shouted, ‘Piss off, the lot of you!’ During recent years he has become calmer, possibly his voices are gone. Every now and then he still is laughing to himself. But it is possible to exchange a few sentences with him. During the day he is passive. He gets his tobacco, watches television and sleeps a lot. During the summer he takes walks through the city and drinks a few beers.
In the USA we find in the last decades of the 20th century a ‘revival’ of phenomenological ideas with well-known schizophrenia specialists such as Carpenter, Strauss and Davidson (see Carpenter, Strauss & Bartko, 1981; Davidson & Strauss, 1995). These psychiatrists acknowledge the devastating effects of the illness on the person suffering from schizophrenia. They call for, ‘two senses of phenomenology’ (Davidson & Strauss, 1995, p. 53) — the objective-descriptive sense of phenomenology of which they consider the Diagnostic and Statistical Manual of Mental Disorders (DSM) an example and a subjective-descriptive sense of phenomenology, with the possibility to study the lives of people with a severe mental disorder in the context of subjective experience, time and meaning.
Corin approaches the life-world (Lebenswelt) of people with schizophrenia from an anthropological and European psychiatric phenomenological tradition (Corin, 1990, 1998; Corin & Lauzon, 1992; Corin, Thara & Padmavati, 2004). Corin (1998, p. 134) claims that ‘it is still uncommon for researchers in psychiatry to consider other philosophical and social science perspectives for the renewal or deepening of our common understanding of experience and subjectivity’. She posits a complex model of reality that does justice to the thickness of being — different from the apparent, ‘transparent reality where meaning is directly accessible’ (1998, p. 134). In using the term ‘thickness of being’, Corin means the complexity of a person’s existence, wherein a person’s life is determined by many layers, for example, the way a person with schizophrenia expresses themselves is connected with their unique being, the disease process, and the culture in which they live. To capture this in understanding is a considerable, but meaningful, challenge.
In another refreshing rebirth of phenomenological philosophy we find the work of social anthropologists such as Arthur Kleinman (Kleinman & Kleinman, 1991). Kleinman and Kleinman (1991, p. 277) emphasize the overbearing practical relevance of experience. Something is at stake — in the case of an illness, it is the suffering that is most at stake (p. 280). When we look from a purely medical (or cultural) point of view at schizophrenia and disentangle the hallucinations, the disordered thoughts, the suspiciousness, in short the symptoms, from the person, then we ignore this human being’s suffering.
I will not give an in-depth description of schizophrenia. Nor is this the place to discuss the concept of schizophrenia per se with respect to the validity of the diagnosis (Vlaminck, 2002). Many authors agree that it is an invalid scientific diagnosis for a wide range of syndromes, but so far no one has been able to come up with a valid construction of discrete types. Nor will I launch myself into the discussion of whether we are justified in giving people a diagnosis. The profession of psychiatry is always a delicate balance between illness and person. By only looking at either the illness or the person the specific quality of psychiatry is lost. In fact all the schools I have mentioned struggle with the balance between illness and person. For me, the validity of the diagnosis of schizophrenia is given in the suffering of the people with whom I work.
To understand schizophrenia fully as an illness suffered by a human being requires an interpersonal relationship between patient and clinician. What is not required is ‘an etiologic or therapeutic theory. What is required is the structure in which a relationship can develop with a clinician trained in the interpersonal skills required to establish those language and empathetic communications by which one human conveys the nature of his inner world to another’ (Carpenter, Strauss & Bartko, 1981, p. 952). In that sense the person-centered approach is the method par excellence to learn more about severe mental disorders. In no other therapeutic tradition is there more expertise to establish a relationship in which one human conveys the nature of his inner world to another. Why then, has there been so little work and research done by person-centered experts in the field of schizophrenia? There are some exceptions that we will discuss later (Rogers, 1967a; Prouty, 1976, 1994; Teusch, 1990; Binder & Binder, 1991; Binder, 1998; Van Werde, 1998, 2005; Prouty, Pörtner & Van Werde, 1998; Warner, 2002; Sommerbeck, 2003). The smallest effects of experiential psychotherapies are found for chronic and severe problems such as schizophrenia (Greenberg, Elliott & Lietaer, 1994, p. 509). This knowledge in itself cannot explain why there has been so little attention paid by the person-centered field to schizophrenia. As has been said, we have to be modest in general concerning the therapeutic effect in regard to schizophrenia.
The main purpose of this article is to outline a person-centered approach to schizophrenia. I will discuss a lot of work and findings from schizophrenia research in the last decades, especially from the fields which take a broad phenomenological, anthropological and cultural view on schizophrenia, while keeping an eye on the disease’s medical aspects. Surprisingly, one will more often find person-centered elements with respect to schizophrenia in the work of the authors I introduce, than from within the person-centered tradition itself.
With respect to the person-centered approach and schizophrenia I hope to make it clear that, so far, this tradition has missed an essential ingredient in regard to persons with schizophrenia because of the unwillingness of the approach to name it as a disease. A noun is a terrible thing to waste, says John Strauss (2005) in the title of his paper. A noun is necessary to describe the disease process. It is the objective side of the human suffering. If we ignore this objective side, all the burden of the illness is piled on the individual person. With respect to schizophrenia (and other severe mental illnesses) this weight is more than a person can bear. I will argue that a proper person-centered approach to schizophrenia is only possible if we acknowledge the disease process the person is suffering from. Only when we explain the illness, can we understand the person with schizophrenia.