Inquiring into the origins of the disease of psychosis through examination of patient narratives.
Marilyn Charles Ph.D., ABPP, Austen Riggs Center
Jennifer Durham-Fowler Ph.D., Austen Riggs Center
Gail Newman Ph.D., Williams College
Michael O’Loughlin Ph.D., Adelphi University
Project timeline: From September 2008 to present
The Pathways to Psychosis Project is an ongoing project in which we are attempting to better understand the subjective experience of psychosis, including the ways in which an individual grapples with the symptoms, the diagnoses, and the treatments offered. In this project, we have been studying archival data from the Austen Riggs Center Follow-Along Study in an effort to try to better understand subjective experiences of psychosis and treatment. Our team has presented data from that study nationally and internationally. Several book chapters are currently in press or in preparation (Charles, Clemence, Newman, & O’Loughlin, submitted; O’Loughlin & Charles, in press; O’Loughlin, Newman, Charles, & Clemence, submitted) and a book is currently in progress to report on those findings.
In Mad in America (2003), Robert Whittaker documents the many mistakes American psychiatry has made in its quest for medically respectable and profitable ways of conceptualizing conditions such as schizophrenia. Penney and Stastny’s (2008) compelling work, The lives they left behind, and Gail Hornstein’s (2009) book, Agnes’s jacket, in which she explores the marginalization of psychiatric patients, and the absence of their voices in treatment, both raise very troubling questions about conventional notions of madness as illness, and the medicalized treatment regimens that such an approach implies. While the anti-psychiatry movement is not new (e.g., see Bentall, 2004; Double, 2006; Mosher & Hendrix, 2004), empirical work such as that compiled by John Read and colleagues (Read, Mosher & Bentall, 2004) offers a compelling case for understanding the sociohistorical and familial origins of the kinds of disturbances that we so readily catalog as mental illness.
There is little doubt that psychosis represents significant dis-ease for those who are designated psychotic. In fact, the disorder appears to induce sufficient discomfort in those who witness it, and in the psychiatric establishment, that there is often a rush to medication in order to mute the dissonant noises that psychosis represents. In addition to the quality of life issues this poses for patients designated psychotic, medication presents methodological difficulties for those who work therapeutically with psychotic persons. Are the confusions, the halting speech, the mutenesses that are present, and the non-sequiturs in speech, symptoms of psychic dis-ease, or are they merely manifestations of attempts to reach for meaning thorough a pharmacological haze? Can we reach through the speech of psychotic persons to comprehend the signifiers that may reveal a quest for understanding?
Drawing on a strong European movement for patients rights, embodied in organizations such as the Hearing Voices Network (cf. Blackman, 2001), Gail Hornstein (2009) suggests that there is a compelling imperative to return to patient voices, and to reconceptualize the experience of patients who express mental distress in terms of narratives of their suffering, narratives of their trauma, narratives of their life histories, narratives of their disappointments, and narratives of their very being as relational and emotional beings. Austen Riggs, with its proud history of respect for patients and respect for collaborative, psychodynamic work with patients and families, represents one of a few places in the U.S. where patients are afforded the opportunity to conceptualize their psychic suffering, and reconceptualize their lives. The extensive data being collected as part of the Follow-Along project provide an unparalleled archive for studying the stories underlying psychosis, and offer the opportunity to develop narratives of the dis-ease of persons suffering psychosis and related disorders that can provide a compelling counter-narrative to those who would warehouse “mentally ill” patients or shock or medicate them into oblivion. Even in the open and compassionate setting of a facility such as Austen Riggs, the psychotic difficulties some patients experience are exquisite. Thus it is imperative that the story of the Riggs patients be told, both to illuminate the experience of psychotic suffering and the possibilities of therapeutic healing inherent in what Riggs stands for.
Our proposal is to engage in a close-up study of the narratives of a sample of such patients, using intake interviews, follow up interviews, and medical records to build a picture of the struggles of select Riggs patients suffering from what our society calls psychosis. The particular questions of interest to me are as follows:
- Can we identify through the speech of patients and/or through family history the point at which psychosis surfaced?
- Is the psychosis manifested in some form of silence or lack?
- Is there evidence from the trigger events of ways in which participants’ life histories, the severance of social links, or the inheritance of intergenerationally transmitted phantomic trauma trails contribute to the onset of psychosis?
- In what ways have familial and societal structures [including psychiatric and medical services] either ameliorated or exacerbated the psychotic flight?
- What is the human experience of each patient? Is there a way through this close narrative attention that we can bring back into the conversation about psychosis the narrative experience of the patient and the ways in which we can assist patients designated as psychotic in connecting the narrative threads of their own experience so that they may continue to live purposeful lives?
This study will involve engaging with the stories of 44 patients identified as psychotic at Riggs. Data to be used in the study include:
- Guided Clinical Interview
- Dynamic Interviews
- Relationship Anecdote Paradigm Interviews
- Intake information, including family history
- Case Abstract
- Projective test data
A note on methodology
While compelling evidence for the suffering that is psychosis can be found in first-person accounts (e.g., Barker et al., 1999; Greenberg, 1986; Cardinal, 2000; Peterson, 1982; Saks, 2008) and fictional works (e.g, Allen 2007; Kesey, 2002), the proposed work is an attempt to shift and perhaps alter the professional gaze of psychiatry/psychology, by allowing us to seek understanding of the suffering of those aspects of the human condition that, relegated to madness, we pathologize as an illness in need of medical intervention. More than first-person accounts are needed if we are to reach the psychiatric establishment and if we are to impact on the professional training of clinicians. Psychoanalysis has the capacity to provide effective relief from psychotic suffering. It remains, however, for those of us committed to the value and efficacy of psychodynamic ways of working to demonstrate its power in ways that reach the broader professional community. This is especially urgent in the current era of “evidence-based” mandates – a time when psychoanalysis, by all accounts, is in rapid decline. As clinicians and researchers we must join with our natural allies, our patients, to marshal evidence of suffering, of struggle, and of healing in the face of a skeptical world.
In addition to the advocacy posture just described, my work is informed by various lines of psychoanalytic inquiry. One line, descending from Ferenczi’s The clinical diary (see also Garon, 2004), and others drawing from lines of French thought, namely the work of Davoine & Gaudillière (2004) on severance of social linkages; Abraham & Torok (1994) on phantomic trauma; André Green on negativity at the center of the self and introjected depression (Green, 1986, 1999; Kohon, 1999); as well as from specifically Lacanian work on psychosis (e,.g., Apollon, Bergeron & Cantin, 2002; Lacan, 1993). In my own recent writings (2007a, b; 2008a, b; 2009a, b; In preparation) I have worked to integrate across these bodies of work to articulate the nature of the breakdown in language and social linkages that are involved in psychosis, and to examine the possibility that early trauma or even intergenerationally transmitted trauma (cf. Atkinson, 2002; Danieli, 1998; Fraiberg et al., 1975) that is not symbolized, and perhaps even encapsulated, has the potential to lay the seeds for future psychosis.
From a methodological perspective my works draws on interpretive heremenutic traditions that have a long history in cultural anthropology and feminist inquiry (e.g., Behar, 1996; Behar & Gordon, 1997; Clifford, 1988; Clifford & Marcus, 1986; Geertz, 1973; Patai, 1987; Steedly, 1993; Taylor, 1979) and that have made some inroads into psychological inquiry (e.g., Bruner, 1986; Coles, 1987: Packer, 1991; Packer & Addison, 1989; Sarbin, 1986; Smith, 2009; Smith & Osborn, 2003) in recent years. These approaches privilege grounded inquiry; an acknowledgement of the positionality and investments of the researcher; a commitment to understanding in context; and a heremenuetic process through which narrative is built through iterations of understanding and interpretation. MacIntyre (1984) summarizes some elements of this kind of enterprise in ways that are apt for my purposes:
In successfully identifying and understanding what someone else is doing we always move towards a particular episode in the context of a set of narrative histories, histories both of the individuals concerned and of the settings in which they act and suffer…It is because we all live out narrative in our lives and because we understand our own lives in terms of the narratives that we live out that the form of narrative is appropriate for understanding the actions of others.
The research strategy is emergent but will involve simultaneous use of three data sources to locate each individual psychically:
- The Guided Clinical Interview and family history will serve as the primary source for locating each participant in history and for plotting the trajectory of their lives, both in the present and in relation to ancestral and sociohistorical contexts. Close attention will be paid here to any evidence of trauma, severance of social links, and intergenerational trauma transmission through the processes of parenting and child-rearing that each participant experienced.
- The RAP and Dynamic interviews, administered repeatedly, will provide indicators of each participant’s dynamics, as well as of their relational capabilities, and the presence of any possible repetitions or re-enactments in their relational configurations. These interviews, as well as the Case Abstract will provide the material for fleshing out a theoretical understanding of the psychotic dimensions of each participant’s presumed psychotic experience and will offer material both for a dynamic understanding of psychosis and potential material to further explore the potential role of early trauma and intergenerationally inherited suffering.
- Psychological data in the file, particularly data from projective tests will provide a form of triangulation, offering yet another window into the dynamic formulation of each participant’s difficulties.
The process, as noted above will be emergent and iterative, with thematic comparisons being made within each participant’s life, and across lives, to evaluate whatever patterns may emerge. The overall thrust will be the development of well grounded narratives to document the variety of trajectories that I anticipate different participants will follow in working through these complex issues.