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Su r viv i n g, Ex i s ti n g,
or Livi n g

Phase-sp e c i fi c t h e r apy f o r
severe p s y c h o s i s

Pamela R. Fuller
First published 2013
by Routledge
27 Church Road, Hove, East Sussex BN3 2FA
Simultaneously published in the USA and Canada
by Routledge
711 Third Avenue, New York, NY 10017
Routledge is an imprint of the Taylor and Francis Group, an informa business
© 2013 Pamela R. Fuller
The right of Pamela R. Fuller to be identified as author of this work
has been asserted by her in accordance with sections 77 and 78 of the
Copyright, Designs and Patents Act 1988.
All rights reserved. No part of this book may be reprinted or
reproduced or utilised in any form or by any electronic, mechanical, or
other means, now known or hereafter invented, including photocopying
and recording, or in any information storage or retrieval system, without
permission in writing from the publishers.
Trademark notice: Product or corporate names may be trademarks
or registered trademarks, and are used only for identification and
explanation without intent to infringe.
British Library Cataloguing in Publication Data
A catalogue record for this book is available from the British Library
Library of Congress Cataloging in Publication Data
Fuller, Pamela R.
Surviving, existing, or living : phase-specific therapy for severe
psychosis / Pamela R. Fuller.
   pages cm
Includes bibliographical references.
1. Psychoses – Treatment. 2. Psychotherapy. I. Title.
RC512.F85 2013
616.89’14–dc23               2012049530
ISBN: 978-0-415-51661-7 (hbk)
ISBN: 978-0-415-51662-4 (pbk)
ISBN: 978-0-203-77744-2 (ebk)
Typeset in Garamond
by HWA Text and Data Management, London
Co ntent s

Acknowledgements ix

Introduction 1

1 The three phases of severe psychosis: surviving, existing, and living 5

2 The Surviving Phase: characteristics and care 21

3 The Existing Phase: characteristics and care 41

4 The Living Phase: characteristics and care 63

5 Incorporating trauma treatment into care for psychosis 75

6 Phase-specific group therapies 91

7 Building the clinician’s psychological stamina 101

8 Conclusions and future directions 111

References 119
Index 127
This page intentionally left blank
Ackno w le dg e m e n t s

I am very grateful to the many people who have helped to make this book possible.
First, to the many individuals with severe psychosis who have let me know them and
allowed me to walk with them as they worked to regain a greater sense of themselves
and satisfaction in their lives. I have been changed by my experiences with them.
To Brian Martindale and Alison Summers, the editors of the ISPS series, for their
wisdom, insight, and guidance in writing this book.
To Perry, for being the first to encourage me to publish. To Adam, who steadfastly
supported me in this endeavor and provided extensive, insightful edits. To Benjamin
and Breila and extended family for their support, and to the many colleagues across
disciplines who have contributed to these ideas.
This page intentionally left blank
I ntro d u ct i on

“I don’t want voices anymore, but I can’t survive without them.”

These are exciting times in the expansion of our understanding and treatment of
psychosis. We are progressing from a view of psychosis as a solely biological condition
to a biopsychosocial perspective, which recognizes that complex factors contribute
to the etiology and manifestations of the diverse forms of psychosis. In particular,
there is increasing understanding that experiences of psychosis can range from more
severe forms (characterized by an extreme disturbance in the sense of self, highly
interfering and/or distressing hallucinations or delusions, and significant impairment
in functioning) to the less interfering experiences of a higher functioning individual
who hears voices or maintains a circumscribed delusion. This reflects a radical and
necessary shift from an oversimplified bifurcation of “psychotic” or “not psychotic”
to one that considers the intensity and severity of interference of psychosis in an
individual’s life.
Our broadening to a dimensional perspective of psychosis has been accompanied
by advances in treatment as well. As part of this progress, there is strong, accumulating
evidence for the role of psychological therapies in the treatment of the psychoses,
including for those diagnosed with schizophrenia. Cognitive-behavioral therapies,
psychodynamic therapies, self-psychology approaches, family therapies, mindfulness
techniques, multidisciplinary, psychosocial programs, and other approaches each are
contributing diverse, important practices for enhancing treatment efficacy. These
approaches target improving treatment outcome, including enhancing a sense of self
and interpersonal experiences, increasing adaptive, reality-based coping, reducing
distress and intrusion of hallucinations and delusions, and improving overall
functioning.
These contemporary approaches reflect dramatic and much needed progress
away from a medication-only approach to psychosis. Treatment with antipsychotic
medication alone has been shown to be insufficient and to be associated with severe
side effects, such as diabetes mellitus, hyperlipidemia, and obesity. There also are
poor compliance rates with antipsychotic medications and negative symptoms, social
skill deficits, depression, and cognitive difficulties often persist. Further, relapse rates
for medication-alone approaches remain high, even when medication adherence is
2 Introduction

monitored. These limitations of medication-only, illness-model approaches have

prompted development of more comprehensive recovery models, which include a
renewed focus on psychological interventions for psychosis.
By creating a means for determining which interventions to conduct when,
many of the diverse treatment approaches currently in use may be integrated into
a comprehensive, strategic approach to psychosis. In response, this book offers a
conceptual framework, the Surviving, Existing, or Living (SEL) model, as a method
for assessing the person’s often fluctuating psychological capabilities and needs and
choosing the type and timing of interventions accordingly. As such, the model allows
for integration of the many therapies in use (including but not limited to cognitive-
behavioral therapies, psychodynamically informed approaches, and family therapies)
into a strategic approach to care and recovery that strives to enhance alignment between
therapeutic interventions and the individual’s psychological state and psychological
readiness. The model conceptualizes psychosis along a continuum of severity, based
on such factors as the extent of self-definition, interpersonal awareness, distressing
hallucinations, or delusions, and awareness of thoughts and emotions. Three general
phases (Surviving, Existing, and Living) of the model fall along the continuum,
reflecting different levels of severity. The specificity of the features described for
each phase allows for characterizing the immediate psychological state of the person
to guide effective pacing of therapeutic interventions. In addition, the treatment
approach can be quickly modified in response to the rapid changes in psychological
status that can occur. This suggested approach to treatment planning is in keeping
with contemporary clinical and empirical literature which, instead of advocating for a
single treatment approach to psychosis, indicates that certain treatment interventions
may be more effective at particular times, depending on the individual’s status.
Surviving, Existing, or Living also presents a specific “how-to” guide for providing
psychological services for the most severe forms of psychosis, including for those
with a diagnosis of schizophrenia, across the different phases. The most severe form
of psychosis refers to those who, at some point, have experienced a complete loss of
awareness of existence of the self (and the accompanying significant disturbances in
thinking, behavior, affect, and perception) during an acute episode. Such an episode
falls at the furthest, most extreme, endpoint on the dimensional scale of psychotic
experience, and includes many diagnosed with schizophrenia. Phase-specific
treatment strategies designed to foster and maintain engagement and facilitate
progression from the Surviving to the Existing and Living Phases are described, with
the use of illustrative case examples. Because there has been less attention to those in
an acute or chronically acute phase, special attention is given to detailed descriptions
of interventions for the Surviving Phase (i.e., acute, severe psychosis). In addition,
parallels between phase-specific treatment for psychosis and current trauma treatment
models are highlighted, to expand the mental health professional’s understanding
of how maltreatment may contribute to psychosis. Methods for effective, trauma-
informed intervention are also described, as well as applications of the SEL model to
group therapies. Finally, the importance of fortifying the mental health professional
who works with individuals with severe psychoses is explored.
 Introduction 3

Engagement and treatment can be especially challenging with those who have
experienced more severe, chronic forms of psychosis and have been treated within
a medical model, particularly in comparison to treatment with those experiencing
a first-episode psychosis initially approached from a recovery-oriented perspective.
When a psychosis persists over time, removal from reality into hallucinations and
delusions can become an automatic, entrenched means of coping with stressors
and with people. Years of being ostracized from society and separated from home
communities, being told one has a chronic, debilitating brain disease, and living a
restricted life, can result in a narrowed identity as a patient or as a disease (i.e., “a
schizophrenic”). For such individuals, and for those who work with them, the idea
of having a satisfying life can be difficult to imagine. Particularly if the person has
been treated within a medical model for years, the shift to the collaborative, hope-
instilling perspective of recovery-oriented mental health care can be a much-needed,
yet startling, change. The ideas in this book originally were developed to assist mental
health professionals in making this shift in approach by describing ways to facilitate
engagement and work with such individuals.
While Surviving, Existing, or Living places particular emphasis on the most
severe forms of psychosis, many aspects of the model are applicable to assessing and
treating less debilitating forms of psychosis as well. For example, the model may
assist in tailoring the intensive, community-based services that are being provided
as early interventions in psychosis, including for first-episode psychosis. Further,
although the book has particular emphasis on psychological services for psychosis,
the model has relevance for tailoring the treatment planning of various disciplines,
including nursing, social work, pharmacy, psychiatry, experience-based experts, and
occupational, vocational, and recreational therapists.
The overall purpose of Surviving, Existing, or Living is to offer a heuristic model
for conceptualizing psychosis dimensionally and for matching interventions to the
individual’s psychological state. It also offers methods for providing psychological
services to persons with the most severe forms of psychosis, including those with
a diagnosis of schizophrenia, with the goal of increasing the motivation and skill
of mental health professionals who provide services to individuals for whom a
relationship is especially difficult, but particularly important. In essence, this book
offers a means for helping individuals move from suffering to recovery, beyond
surviving toward more fully living.
This page intentionally left blank
Chapter 1

T he thre e p h as e s of s ev er e
psyc ho s i s
S urviv in g, existing, and li v i n g

“My life is artificial.”

The above statement, which came from a man who was diagnosed with schizophrenia
and had been at a psychiatric hospital in the United States for many years, poignantly
expresses what the experience of severe psychosis can be like: a false self and a false
life. Can we, as mental health professionals, help someone like this progress from
an experience of an “artificial” life to one of more fully living in a real and satisfying
way? This book offers a guide on how to do that. The first step toward accomplishing
that goal is to understand the most severe form of psychosis (including the
diagnostic category of schizophrenia), not as a list of symptoms, but as a complex
human experience. This first chapter delineates specific characteristics of the most
severe form of psychosis, particularly in relation to past and current descriptions
of schizophrenia. This is followed by a description of the Surviving, Existing, or
Living (SEL) model as a means to conceptualize this varying, complex, and often
fluctuating experience by delineating features along a continuum, which are divided
into three general phases of severity. Because selecting and implementing treatment
interventions that match the individual’s immediate presentation and psychological
readiness is a crucial aspect to enhancing treatment effectiveness, the SEL model also
offers a method for determining what interventions to use at particular times. An
overview of the general types and objectives of interventions for each phase is given
in this chapter, with specific details provided in subsequent chapters.
The emphasis in this chapter and throughout the book is on the conceptualization
and treatment of the most severe forms of psychosis, for those who – in addition
to hallucinations or delusions – experience, at some point, a loss of a sense of self.
Throughout this book, reference to those with “severe psychosis” and “the most severe
form of psychosis” will pertain to this subset of individuals, which includes many of
those diagnosed with schizophrenia, as well as some who have been misdiagnosed or
never labeled.
6 The three phases of severe psychosis

Char acteri st ics of severe psychosi s

The problem in defining characterist ics of severe
psychosis
Although there are extensive concerns and disagreement about the current diagnostic
category of schizophrenia, most would likely agree that there is a subset of individuals
whose psychosis is far more distressing and impairing, who – in addition to having
hallucinations or delusions – exhibit significant problems in thinking and in
functioning. Further, psychosis in its most severe form regresses into a terrifying state
of existential uncertainty. Some clinicians and researchers, from the remote past as
well as the present, consider this to be a defining characteristic of those diagnosed
with schizophrenia. Those with other forms of psychosis, as well as some who have
been diagnosed with schizophrenia, do not regress to this extreme of questioning
their very existence.
Problems with the construct validity of the term “schizophrenia” complicate
conceptualization of severe psychosis as well as confound research into etiology
and treatment efficacy. It has been recognized since Bleuler (1911/1950) that
“schizophrenia” may actually represent a collection of disorders. The number of
psychiatric disorders that include psychotic symptoms indicates that there are
many variants of psychosis, with different causes, manifestations, and outcomes.
Schizophrenia currently is defined by the experience of hallucinations, delusions,
disorganized speech, grossly disorganized or catatonic behavior, negative symptoms
such as flat affect, alogia, or avolition, thought disturbances (e.g., thought broadcasting,
insertion, or withdrawal) and delusions of control (American Psychiatric Association,
2000; World Health Organization, 1994). It is inevitable that these criteria for
schizophrenia – and for other, related diagnostic categories – will change as our
understanding of psychosis, and its various presentations, advances. In particular,
the varying forms and degrees of psychosis necessitate a dimensional perspective
rather than discrete categories for psychosis. Understanding the most severe form
of psychosis as defined by the complete loss of awareness of existence of the self
in the most acute, regressed, phase (and the accompanying severe disturbances in
thinking, behavior, affect, and perception) would place such presentations at the
furthest, and most severe, endpoint on the dimensional scale of psychotic experience.
With this approach, “schizophrenia” is distinguished more by severity, including in
self-disturbance, from other, less impairing, psychotic experiences as well as from
other mental health problems. The dimensional perspective also facilitates a move
away from simplistic notions of being “sick” or “well,” “psychotic” or “not psychotic.”

Additional characteristics of severe psychosis

In addition to the contemporary diagnostic criteria, the following features have
been emphasized in the clinical and empirical literature as distinguishing features of
schizophrenia and are proffered here to characterize the subgroup of the most severe
form of psychosis.
 The three phases of severe psychosis 7

Disturbance in sense of self

The clinical literature has long described schizophrenia as a fundamental disorder of
the self. For example, in 1896, Kraepelin (as cited in Sass and Parnas, 2003) described
the “loss of inner unity of consciousness” as a core feature of dementia praecox that
was like being “an orchestra without a conductor.” Characteristic symptoms of
schizophrenia in the Diagnostic and Statistical Manual, 3rd edition, revised (DSM-
III-R: American Psychiatric Association, 1987) included a disturbance in the sense of
self, as evidenced by “extreme perplexity about one’s own identity” and the ICD-10
(World Health Organization, 1994) describes a “disturbance of the basic functions that
give a normal person a feeling of individuality and uniqueness.” Karon and Vandenbos
(1981) referred to this central issue as “existential terror.” More recently, Sass and
Parnas (2003) have described schizophrenia as an “ipseity disturbance,” a fundamental
disorder of the self characterized by a diminished awareness of one’s existence. Lysaker
et al. (2008) referred to this as “the diminishment of self-experience.”
It is not uncommon for this uncertainty about existence and self-diminishment
to be directly stated. For example, a man diagnosed with schizophrenia said, “I think
I am dead but don’t know it yet.” Another stated that, “The real Jeanne S. died three
years ago. This is the third Jeanne S. and is just a robot.” When another client was
asked what he looked like, he became quite anxious and said, “I don’t know. I don’t
have a picture of me from when I was a kid.” When another was asked what she
sees when she looks in the mirror, she replied, “All I see is my voices.” For these
individuals, in a most regressed state, their fear is that they may not exist. In essence,
the fundamental question in this most acute phase is not “Who am I?” but “Am I?”
This, then, is a hallmark of the most severe psychoses that differentiates it from other
psychotic disorders: at his/her “worst,” the person loses the knowledge and reassurance
of existence that is generally an implicit, fundamental tenet of the human experience.
With a slightly more developed self-structure (i.e., a better defined sense of self ),
this threat to existence can manifest as a fear of annihilation, which reflects awareness
of existence, but an existence that is precarious. That is, the person exists but is
terrified of being killed, such as with persecutory delusions that reflect existential
threat. For example, a client who expresses delusional beliefs that the CIA or some
other secret or security service is after him reflects, in part, a fear of being killed (as
well as some grandiosity that they are important enough for a national secret service
to want them killed). Threat to existence can also manifest as fears of falling apart or
disintegrating, of being engulfed (Laing, 1960), or as somatic delusions. The sense of
the self as a coherent, separate individual develops as the person with severe psychosis
reconstitutes. This may be evident in an increased ability to express opinions and
ideas and an increased awareness of others and of their surroundings.

Limited awareness of others

Significant impairments in social functioning in those diagnosed with schizophrenia
are well-known. The severe social impairment during the acute phase of more severe
8 The three phases of severe psychosis

psychosis is easily understood, given the level of distress and perceived threat, the
disruption in the inherent organization of the self, and the focus on internal stimuli.
Specifically, when an individual is terrified that s/he does not exist or perceives an
extreme threat to existence, the attention is turned inward, perceptions are distorted,
and there is little awareness of anything outside the self. As the individual reconstitutes
and safety and sense of self increases, there is greater definition between self and other
and, concomitantly, increasing awareness of others. However, even as the person
stabilizes, problems in social relating may remain, including limited conversational
skills, deficits in accurately reading social cues, and limited assertiveness.

Constant sens e of threat/high arousal

During an acute psychotic episode, the individual perceives the world as a
threatening and unsafe place and readily misperceives experiences as dangerous.
This is accompanied by a higher arousal level, physiologically and emotionally. For
example, acutely psychotic individuals frequently present as highly agitated, pacing,
sleeping less, distracted by distressing voices or beliefs, talking rapidly, and paranoid.
It is obvious, at these times, that the individual is highly aroused physiologically
and emotionally under the perceived experience of intense threat to personal safety.
However, a greater extreme of arousal is evident in the person who presents with
severe emotional restriction, numbing, and the feeling of detachment (dissociation)
reflective of an extreme stress response to a perceived threat to one’s existence; a
reaction frequently described in the trauma literature as the “freeze” response (Levine,
1997). This is similar to an animal that plays dead as a final effort to protect itself
from being killed (see Karon and Vandenbos, 1981, and their description of catatonia
as a survival response to existential terror). The major tranquilizers that have been
used to treat acute psychosis and the anti-anxiety medications used as the initial
pharmacologic intervention for first-episode psychosis in some countries (Spencer et
al., 2001) target this high arousal. An essential aspect of stabilization of the person,
then, is both the reduction in perceived threat, and in concomitant emotional and
physiological arousal.

Limited awareness of thoughts

An additional characteristic of a person with severe psychosis is a limited awareness
of personal thoughts, which is a fundamental aspect of metacognitive abilities.
Rudimentary self-structure (i.e., emerging awareness of the self as made up of
different, interrelated parts) is necessary to be able to examine personal thoughts and
feelings as passing states rather than as an immediate, global self-depiction. That is,
a person has to be able to discern that one has thoughts and feelings rather than one
is his or her thoughts or feelings. In addition to the lack of awareness of cognitive
processes, there seems to be an inverse relationship between logical thought processes
and the degree of psychosis. That is, the more psychotic the individual, the less
coherent and logical the content of speech. Increasing problems in logical, coherent