Abstract
The expression of psychological distress through somatic symptoms is most prevalent among children. Somatic symptom disorders represent a difficult category of disorders to treat and they are often misdiagnosed due to their physical symptomology and dismissed due to their malingering stigma. The current case report follows the treatment of David, a 10-year-old Caucasian male, admitted into the pediatric psychiatric ward of a general hospital, uncommunicative, showing little signs of responsiveness, and dependent on nursing staff for basic needs. Following a complex treatment protocol which integrated key elements of psychodynamic and cognitive-behavior (CBT) treatment recommendations for somatic disorders, David was discharged after 6 months as an inpatient. This in-depth case study provides a synthesis of the varied research on somatic symptom disorders and an acute understanding of how to combine the understanding of complex family dynamics and individual personality structure with empirically reinforced treatment strategies.
1 Theoretical and Research Basis for Treatment
Somatization refers to the experience and expression of emotional pain through somatic (bodily) symptoms (Busch, 2014). Somatic symptom disorders represent a difficult category of psychological disorders to treat (American Psychiatric Association, 2013). Children are known to suffer greatly from somatization (Ierodiakonou, 2001) and while young children often use somatic symptoms to describe their mental pain (i.e., “I have a pain in my heart”), a more advanced use of psychological language generally enables a more accurate expression of their mental pain (Carr, 2015).
It is common for children to experience psychosomatic symptoms (such as stomach ache when nervous or headache when sad) and many go unreported and are short-lived with minimal negative impact (see Schulte & Petermann, 2011, for a review). As many as 24% of children in a Nordic sample of below 18 years of age were deemed by their parents to have experienced psychosomatic complaints at least once a fortnight (Berntsson & Köhler, 2001) and when American children were asked weekly to report any possible physiological symptoms, 90% stated they experienced abdominal pain at least once during the 6-month study, despite only four out of the 237 child participants seeking medical advice (Saps et al., 2009).
It appears that having a “tummy ache” is an expected part of childhood, but while many children experience somatic symptoms occasionally, children who consistently suffer from somatization are likely to suffer from more emotional distress, behavioral problems, and have a pronounced fear of new situations and separation (Campo, Jansen-McWilliams, Comer, & Kelleher, 1999; Shanahan et al., 2015). In addition, somatization is widely associated with alexithymia, defined as a difficulty identifying, distinguishing between, and defining feelings and bodily sensations of emotional arousal (Nemiah, 2000; J. D. Parker, Taylor, & Bagby, 1998; Scarpazza, Làdavas, & Cattaneo, 2018). This has been related to faulty neural responses to emotional stimuli, poor homeostatic processing, and the detachment between affective and cognitive processing occurring following trauma (Busch, 2014; Kanbara & Fukunaga, 2016; Scarpazza et al., 2018). Along with alternative responses to traumatic experiences, those categorized with alexithymia have been shown to have constricted imaginal processes and an externally orientated cognitive style (J. D. Parker et al., 1998). In keeping with the current study, the minimization of psychological difficulties and development of dissociative and somatoform symptoms is common within the constructs of alexithymia and experiential avoidance (Baslet & Hill, 2011)
The development of a somatic mental health condition has long been the subject of interest for psychological researchers. Freud coined the term “conversion hysteria,” an impairment aroused by unconscious conflict and expressed through more tolerable physical symptoms (Freud & Breuer, 1895). Somatization can have several functions as a defense mechanism: focusing on the body instead of intrapsychic conflicts, warding off aggressive urges by weakening the self, and preventing separation from important attachment relationships (Busch, 2014). Many somatization theorists reflect this and understand the inextricable link between physiological and psychological factors in physical illnesses (Luyten, Beutel, & Shahar, 2015; Luyten & Van Houdenhove, 2013). According to psychodynamic theorists, conversion symptoms are thus a method of communicating distressing and intense emotions in a manner which is more familiar and less threatening (Carr, 2015). This understanding of psychosomatic symptomology concurs with a cognitive-behavioral stance though behaviorists focus on the reinforcement afforded to the child in the “sick role” as a maintaining factor (Carr, 2015).
Although there is a common occurrence of physical complaints with an unknown etiology in pediatric populations, most children will be seen only by a primary physician who, in these cases, is expected to have a complex understanding of potential neurological, physiological, and psychiatric mechanisms to generate a differential diagnosis (Spratt & Thomas, 2008). There are many misconceptions of somatic symptoms and related disorders. Conversion disorders are often rated as less serious, in need of less intensive treatment, and, at times, even seen as malingering (Campo et al., 1999; Kanaan, Armstrong, Barnes, & Wessely, 2009; Nunn, Lask, & Owen, 2014; Stone, Vuilleumier, & Friedman, 2010). There is a later diagnosis due to the need to rule out all other disorders before providing a psychiatric diagnosis and this delay can further contribute to the sick role which befalls the child (Fennig & Fennig, 1999). Children (like adults) suffering from psychosomatic complaints often experience stigma (Garralda & Raynaud, 2008) and face upsetting beliefs that they can just “snap out of it” and that it is “all in your head”(Morgan, 2015). As can be seen in the following case, compliance to treatment and continued deterioration can be interpreted as a sign that it must be a physical illness.
The often invalidating and insignificant nature of a somatic disorder as opposed to a physical disorder is further enhanced with the move to mental health care (as opposed to a regular pediatric service). There is still a large stigma on pediatric mental health conditions (Eaton, Ohan, Stritzke, & Corrigan, 2016; Georgakakou-Koutsonikou & Williams, 2017; Koike et al., 2017; Thobaben, 2000) which contributes to the ineffective engagement in mental health services (Wolpert, Deighton, Fleming, & Lachman, 2015).
This article primarily serves to illustrate a severe case of somatic symptoms disorder and how treating such a complex disorder is possible through integrating leading treatment approaches. Through an in-depth analysis of the patient’s history, diagnostic and treatment process through to recovery, this article will highlight the many challenges faced with such a complex condition. The article will draw upon the struggle of treating within a multidisciplinary team with conflicting approaches and the difficulty in diagnosing while treating an unresponsive patient. Finally, describing and understanding this complex case of somatic symptom disorder within a cognitive and psychodynamic framework will promote the elucidation and discussion of key therapeutic principles.
2 Case Introduction
The family gave full authorization for the publishing of this case report and all names and identifying details have been changed.
David, a 10-year-old Caucasian male was referred to the Child and Adolescent inpatient psychiatric unit following admission to the general medical ward of the children’s hospital. He had been deteriorating over the course of the prior 3 months following a throat infection, 1 which led to increased fatigue, withdrawal, a lack of appetite, and eventual cessation of communication and basic functioning. David’s parents described increased deterioration following visits to medical and psychiatric experts. He had undergone comprehensive medical testing by immunologists, pediatricians, and neurologists for 2 months as an outpatient, but following his continued deterioration and a month of intense outpatient psychological treatment (which documented his compliance and strict adherence to a pacing program), inpatient testing was commenced. No physical anomalies were discovered during the exhaustive testing (as outlined below) though his functioning rapidly decreased during the 3 weeks prior to admission on the Psychiatric Unit.
3 Presenting Complaints
Upon admission to the Psychiatric Unit, David was unresponsive, lying with eyes closed, and used subtle movements occasionally indicating that he could listen to those around him. He was fed by a feeding tube and arrived on the unit using diapers for his needs, though these were removed and he was carried to the toilet by parents and nursing staff upon subtle signaling. David showed little sign of life and responses were limited to subtle movements which could be assumed to mean yes or no.
4 History
David was the younger of two children born to academic parents. Both siblings were high achievers, demonstrating the heritability of their parents’ intelligence and both excelled at sports and extra-curricular activities.
David’s mother Rachel described herself as a former free spirit, traveling and exploring before meeting David’s father, Gideon, with whom she shared an intellectual affinity. Following a fraught relationship, the pair divorced when David was aged 5 and, upon admission, demonstrated the continuation of ongoing disputes regarding child-rearing decisions and shared care.
David seemingly had close relationships with both parents. Most of the week was spent at his mother’s residence where David was said to be a keen cook and enjoyed playing the clown during family get-togethers and frequent outdoor expeditions with other single-parent families. David also was said to be very close to his father, and together with his brother, they traveled around the country attending their favorite basketball team’s matches and fine dining at Jerusalem’s restaurants and wine bars. Gideon displayed great pride at David’s stubbornness, drawing on their similarity in this personality trait, one which he saw as key to his success as a renowned scientist.
David was reported to have been a sociable child, advanced in intellectual achievement and a quick thinker. He did not display separation anxieties or difficulty with transitions, although he was reported to have a symbiotic relationship with his elder brother which ceased recently when his brother hit adolescence. There were no overtly traumatic occurrences reported during David’s early childhood, other than his parents’ divorce. David and his brother were reported to have coped well with their parents’ divorce, seeing it as preferable for all those concerned, and though it took a significant amount of time to coordinate visitation rights, David was said to have settled into the new conditions well.
David’s class teacher confirmed parental reports of a bright, cheerful, and humorous child, although he demonstrated jealousy toward the teacher’s relationship with his brother and was reported to have attempted to sabotage the relationship by indicating his brother’s dislike of the teacher.
5 Assessment
David was admitted to the pediatric ward to undergo a thorough medical assessment. While undergoing the diagnostic procedures, the clinical symptoms increased dramatically and included severe weakness that progressed to cessation of motor functions. David stopped walking, talking, eating, and using the toilet. An in-depth neurological examination was requested and conducted, but due to a lack of consistency between test findings and clinical presentation, a psychiatric consult was requested. Upon the initial psychiatric evaluation, David did not speak at all but did answer questions in a coherent manner with nods and shakes of his head, a presentation which confirmed that he was fully conscious and fully orientated. Prior to admission to the psychiatric unit, the psychiatrist requested the most expansive physical workup possible to exclude any organic cause of his physical state. Physical workup included whole brain magnetic resonance imaging (MRI), electroencephalogram (EEG), and video EEG; blood workup, including diagnostic markers for rare infectious disease (including West Nile virus, cytomegalovirus [CMV], Epstein-Barr virus [EBV], Q fever, toxoplasmosis, and syphilis); Wilson disease markers; metabolic disease markers; and a nerve conductance test. All tests came back negative.
An interdisciplinary team meeting was called consisting of all pediatric specialties including neurologists, gastroenterologists, metabolic disease specialists, endocrinologists, and psychiatrists and it was concluded that, considering the vast diagnostic testing period with negative results, the possibility of an organic cause was incredibly low and most probably the origin of the physical state was emotional.
Progress was measured during bi-weekly ward rounds and physical assessments. Upon discharge, 6 months after admission, David was administered the Child Depression Inventory (CDI; Kovacs, 1992), Parental Bonding Instrument (PBI; G. Parker, Tupling, & Brown, 1979), and the Screen for Child Anxiety Related Disorders (SCARED; Birmaher, Khetarpal, Cully, Brent, & McKenzie, 1995).
David was deemed to be suffering from a greatly depressed mood and had begun a course of Fluvoxamine at the beginning of admission (gradually increased from 12.5 mg to 150 mg per day due to lack of apparent side effects and the severe clinical presentation). A month into admission, Abilify (2.5 mg twice a day) was added to treatment.
6 Case Conceptualization
During the initial assessment period, multiple psychiatric diagnoses were raised. These diagnoses included severe depressive disorder, conversion disorder, factitious disorder, psychotic disorder, and severe anxiety disorder. Within the early stages of admission, it became clear that David was not suffering from a psychotic disorder, rather the psychiatric team veered toward a diagnosis of severe depression which led to extreme detachment and general deterioration presented with somatic symptomology.
From a psychological standpoint, David was conceptualized as experiencing psychological suffering which was expressed via somatization. It was understood that David had developed few emotional coping resources and that his parents continuous bickering caused him great distress, which he took responsibility for and attempted to control. The formation of a precise case conceptualization took months given the limits to communication and conflicting versions of David’s experience.
David had a close relationship to both his parents which was fractured when they divorced and left him with little contact with a father he idealized. David had grown up with parents thoroughly invested in his care and well-being, though they both struggled expressing frailty, failure, and emotional signs of weakness. Both appeared weary, if not fearful, of one another and this was expressed through reticence and animosity toward one another. When David’s parental stability ended at the age of 5 and his parents went their separate ways, it is quite probable that their own emotional experiences impeded their ability to provide the emotional security and availability which David needed to be able to understand his roller-coastering emotions. Instead of expressing the predictable sadness and uncertainty, even from this young age, he had learnt to put on a mask, play the fool, cheer up those around him, and take the central role in masking his pain and the pain of those around him.
Within a family of high achievers (and compared with his successful older brother), David played the role of joker, smooth talker, and all-round entertainer. He began to experience difficulties socially at school, periods of shaming, excommunication, and loss of friendships. These challenged his self-identity and self-worth and this was exacerbated by the resulting period of depression and intense anxiety. The challenge to his perceived identity and self-esteem was critical in a family which prioritized achievement and fulfillment of potential. David, as an extremely able child, it appears, filled his parent’s needs, emotional support, superior achievements, and constant distraction, but in turn relinquished his own secure emotional development (Miller, 1997). When serving as a mirror for two parents who were unable to tolerate the other’s presence, so too does this create a rupturing split within the child who in turn despises the two characters he is created to play. Later, when a fuller understanding of David’s difficulties was conceptualized, the impact of this narcissistic rupture was further understood with somatic symptoms, in part, serving as defenses against a prominent narcissistic vulnerability (Kealy, Tsai, & Ogrodniczuk, 2016; Pincus & Lukowitsky, 2010).
David was incredibly verbal and had little difficulties with expressing complex ideas though was poor at internal mental reflection (exploring mental states, playing with ideas, coping with the unknown). This inability to express his internal pain appeared to mean that rejection and defeat literally hurt. An already fragile family system found it difficult to support David’s overwhelming emotions and they were expressed physically—sickness, followed by absences from school, followed by increased alienation and even greater anxiety at joining his friends. Eventually David shut off from the world.
Owing to his lack of trust in adults’ ability to care for him, David developed a need to control relationships and maintain the proximity of those loved ones he feared losing. This became evident both in the tactics he employed in school (manipulating his teacher’s relationship with his brother, filling the role of the class clown, perfectionism in educational achievements) and at home. David’s sickness, both at school and at home, severely controlled those around him but so too did it control David, increasing his fear and anxiety and sense of helplessness. He appeared to be detaching from his close relationship with his mother by withdrawing from her touch, attempts at communication, and home life while forming a closer relationship with his father by reinforcing his sense that he was the only person who understood his communication. They had a shared sign language that only his father understood, and his illness generated hours of daily visits in a neutral environment.
It was clear to the treating team that David needed to be gradually reintegrated into the world using a graded exercise program combined with intense therapeutic work to provide a voice to the depressive cognitions expressed through somatic symptomology (National Institute for Health and Care Excellence [NICE], 2007). The treatment program needed to address David’s need for control and fears of progression while equipping his parents to be stronger supports for holding and processing David’s intense emotional experiences. Treatment needed to include a strong family therapy element while teaching David new emotional regulation strategies to deal with his experiences of instability. The treatment also needed to fully address the complex biopsychosocial presentation and reflect the medical model which David and his family presented with.
7 Course of Treatment and Assessment of Progress
The patient was admitted to the Herman Dana Child and Adolescent Psychiatric Unit at the largest hospital in Jerusalem (there is a larger unit located in a uniquely Psychiatric Hospital nearby). The unit houses between 12 and 14 inpatients and up to 4 day patients between the ages of 8 and 18. The staff are comprised of a team of two psychiatrists (senior and attending), psychologists and psychotherapists, mental health nurses, a dietician, psychology student activity facilitators/nursing assistants, and administration staff. There is a small schoolroom on site which is staffed by teachers and teaching assistants. The patient was treated by the first author, a clinical psychology resident (3 times a week); the second author, a consultant psychiatrist (once a week); and the family was seen by the third author, a clinical social worker (once to twice a week). Finally, a family psychotherapist (fourth author) was brought in to contribute to treatment and David was offered regular physiotherapy and hydrotherapy sessions. David had 50 sessions of individual therapy with the first author over the course of 5 months followed by another 12 sessions leading up to discharge with a replacement Clinical Psychologist. The therapy sessions will be explored in further detail below.
Stage 1: Assessment, Reception, and Initial Optimism (Weeks 1 and 2)
Therapeutic goals
Formation of therapeutic relationship, understand presenting problem, generate therapeutic goals, and begin psychoeducation of the complexity of the biopsychosocial presentation of David’s illness.
Individual therapy
Initial relationship formation was challenging due to David’s inability to communicate and his frustration when he attempted to answer questions which demanded greater than a yes or no response. He was clear in responding that he indeed felt sad a lot of the time due to feeling ill and tired and weak all the time. At times, when light-hearted comments were made, he instinctively went to laugh or smile but immediately disguised it with an exaggerated yawn. He appeared to be actively averse to any display of pleasure either by himself or from others. Despite David’s lack of active communication, within the initial sessions, questions surrounding potential traumas were asked in a sensitive though direct manner. David answered negatively to all. Communication was largely guesswork and there seemed to be little which caused a reaction. David had shut himself off from the world and the world had withdrawn from him.
By the third session with David, whereby most the time was spent putting words to David’s bodily sensations, small requests (such as to roll over) were made of him, and while he obliged when they did not require overt activity, attempts to engage him in activities such as guided relaxation, listening to music or a story were met with strong rejection.
It became clear that David was physically able to do a lot more than what he was willing to demonstrate. A session with a physiotherapist confirmed active resistance. Throughout these sessions, David was reassured of the validity of his weakness and the understanding that even though he felt powerless, the path to improvement was through gradually increasing activity. A schedule of activity was formulated and although David and his father were both adamantly against increasing activity levels (the later claiming that David needed to progress at his own pace according to Dr. Bryan Lask, whose work he quoted), a schedule was formed. 2
Family therapy
Initial assessment of family dynamics indicated a pattern of behaviors which were replicated throughout the admission. David’s parents’ relationship was characterized by mutual accusations and a lack of tolerance toward one another. In the initial assessment meeting with the treating team members, his father shared an extensive literature review of his son’s condition, including a diagnosis of David’s condition, Pervasive Refusal Syndrome (PRS). He highlighted the rarity of the disorder and was confident of the course of treatment. On the contrary, his mother, Rachel, displayed high levels of anxiety regarding David’s condition and turned to the psychiatric team for support and reassurance. Both parents were very tactile with David, with Gideon hugging, sitting on David’s bed, or resting his feet by David’s head and Rachel massaging, stroking, and kissing David. Gideon was “doing” and Rachel was “being” but neither position left much space for David who remained largely uncommunicative.
Stage 2: Splitting of the Team and Setting Demands (Weeks 2 to 4)
Therapeutic goals
Therapeutic goals were to adhere to an activity management schedule (designed together with David), enhancement of control over “my body” and “my space,” move from general refusal to constructive refusal (i.e., how to say no to touch but not engage in total refusal), and engage in clear concise conversation.
Daily activity
David’s defiant behavior was very challenging for the nursing staff. David’s frequent toileting needs (up to 6 times an hour), crying, and inability to hold his body up caused a split in the therapy team. David was frustrated that the nursing staff did not adhere to the strict timings of the planned activity schedule, but so too did David make it clear that he was against the program when it was adhered to. The nursing staff were pushed to their limits taking him to the toilet, changing his wet clothes (when he was not toileted immediately), and they felt that he was intentionally making his body hang heavier and pushing against them rather than aiding transfers. The reactions to this behavior were mixed but the antagonism generated was expressed frequently in staff meetings. Following a case conference with all the pediatric psychiatric team, physical abnormalities were yet again raised.
The oppositional elements of David’s behavior were felt strongly among the treating team and it was felt that giving in to David’s request for no activity may induce boredom, reduce antagonism from parental and nursing figures, and give him the incentive to comply with treatment. David returned to a daily schedule of eyes shut and awaiting his parental visits in the evening. Given the extreme pressure on the nursing staff, while parental visits had been limited to a 2-hr period in the evenings, they returned to fill the full afternoon and evening nursing slots to aid with the physical requirements of caring for David.
Individual therapy
Initially, at the request of the psychiatric team, David was required to spend periods of the day in school with the other children, but when this was met with constant crying and toileting needs, a more scheduled plan was formulated with frequent rest periods. Therapy sessions were moved to the therapy room rather than at the bedside to remove an element of the “sick role.” Although David vaguely agreed to the plan, he began to express aggression and anger with overt bodily responses. He responded to unwanted comments by passing gas loudly and often in the direction of the therapist. This overt expression was at first ignored by the therapist due to the surprising nature of its appearance but was rapidly expressed in words by the therapist once it became a regular occurrence.
When the demands of the schedule were completely reduced, David relaxed considerably though showed little sign of improved cooperation. He appeared to retain improvements in the therapeutic relationship and the close relationship continued to develop in a generally positive direction. Although he appeared to sarcastically sign that the therapist should leave the room when he became exhausted in sessions, he also demonstrated an increased willingness to communicate and persevered in attempting to sign his needs (“no school,” “lie down,” “lots of thoughts in head”). David kept the therapist close and demonstrated an overt desire for communication, albeit nonverbal.
Family therapy
Understanding each parent’s unique needs allowed for a closer working relationship to be formed. For Gideon, it was very difficult to cooperate with the team’s approach which required setting strict limits and actively increasing David’s daily activity. Gideon was still convinced that David’s case was an exact presentation of PRS and, as such, he was prepared for a 2-year treatment schedule before improvement would be overt (as detailed in the literature he had read). There seemed to be overidentification between Gideon and David and a great deal of time was devoted to getting Gideon on board, including an academic case conference which presented him with the current evidence informed treatment, and helping him see how this overidentification was harming the treatment. On the contrary, as time progressed, Rachel displayed increased despair and fear at the irreparable damage which could be caused by David’s state. Both parents were far more amenable to family therapy.
Stage 3: Verbalizing the Body (Weeks 4 to 10)
Functioning
David communicated more with signs and reacted much more to the therapist and members of the nursing team. Although it was felt that he was still aggravating transfers and nursing tasks, when the demands were clear and small enough, he seemed to be a little more cooperative.
Therapeutic goals
Given David’s positive reaction to intense psychotherapeutic work, psychotherapy shifted to a more psychodynamic approach verbalizing David’s unconscious processes and externalizing the internalized. Rather than working “with” David, a greater focus was given to providing David with a voice (Magagna & Scott, 2012) much like in psychotherapy with younger, less verbally proficient, children (Cattanach, 2003; Lieberman, Van Horn, & Ippen, 2005).
Daily activity
The staff on the ward were now far more in tune with David’s needs and understood the split which was occurring between therapists and nursing staff. The staff could see a gradual improvement in David but were also very concerned about his slow pace. There were still many instances whereby David aggressively demanded attention through his bodily functions and these challenged staff to a high degree.
Individual therapy
Having now spent over a month and a half, 3 days a week and often two or three sessions a day forming a relationship, the therapist was also able to begin tackling and challenging why David was so afraid of increased demands on him. Utilizing a psychodynamic approach, issues such as the overt passing of gas and urinating on a nurse were vocalized and confronted (“I can see that your body is reacting to something you really don’t like right now,” “I can see how difficult this is for you and you need me to understand that”). Many therapy sessions were filled with storytelling and metaphor because direct communication was still largely one sided. (On one occasion, the therapist relayed a story of a girl who screamed and shouted but inside felt sad and ashamed. David’s eyes remained almost open for the duration of the story, but when the story was finished, he immediately shut his eyes and returned inwards to his uncommunicative self.)
David’s gazes, ranging from completely shut to almost open eyes, gave a key to how willing he was to engage in discussions. His responses remained at a sign language level and he was often left frustrated by the inability to elaborate on his feelings. He was able to sign clearly that progression awakened a storm of positive and negative thoughts and that at school he had social difficulties, but beyond this no further details were able to be understood. When the therapist hit on an accurate statement, his eyes and body language demonstrated attentive listening, but inaccurate guesses were greeted with grunts, frustration, and a retreat from communication. David appeared to be testing the therapist’s ability to understand him and her willingness to invest in the relationship. While he would make gestures to complain about therapy sessions, he would also use overt externalizing behaviors when sessions were missed or cut short. These, at times aggressive, gestures appeared to amuse David and he showed little sign of shame or unhappiness when they also involved bodily excretions. On one occasion, a flailing of arms hit the therapist in the face and her glasses fell to the bed, causing extreme panic for David and his first notable expression of shame. The therapist vocalized these emotions, described them, and discussed both David’s fear of losing a relationship which was important to him while validating the emotion of shame. This session marked a new stage in communication and David’s desperation to express his apologies encouraged the therapist to continue demanding communication.
Family therapy
David’s parents were now partners in treatment and were more amenable to discussing the psychological implications and causations of David’s condition. They had separate sessions with the family therapist and independently were willing to discuss the implications of their divorce and the family’s focus on “functioning” rather than “experiencing.” Gideon and Rachel had a routine of visits and they coordinated with the team of nurses and therapeutic staff. Despite this, Rachel discussed the difficulty of David’s situation and, in addition to her worry, the negative contribution to her previously freer daily schedule. In contrast, Gideon appeared to enjoy his evening sessions reading to and resting with David and showed little sign of frustration with his change in daily routine.
Stage 4: Functional Improvement (Weeks 10 to 16)
Functioning
David remained in bed as he drifted into the third month of inpatient care. Although improvement in terms of physical activity was small, he maintained the increased level of communication (including using signing with parents, therapist, and family therapist), and the commencement of eating. Toward the end of this period, David began to attend school in a wheelchair, eat independently, and open his eyes for longer periods.
Therapeutic goals
Due to David’s refusal to ingest food orally, his feeding tube had been in situ for over 2 months and he was approaching the deadline for a long-term feeding plan which required a percutaneous endoscopic gastrostomy (PEG) tube implanted via a surgical procedure. Therapy goals were centered around processing fear of progression and losing control but were also impacted by the need to eat rather than undergo surgery.
Daily activity
Nursing staff still felt that David was aggressive in his noncompliance to care needs. In terms of medical requirements, while David showed no movement in view of others, overnight and when alone, David demonstrated a significant amount of movement in bed which alleviated the worry over bed sore development. Staff were very concerned about feeding with some staff members attempting to “coerce” David to eat and others simply placing the food by his bed as agreed in the therapeutic plan.
Individual therapy
David appeared fearful of the operation, and yet he refused to attempt food intake. Despite David’s increased signing, most therapeutic work was providing a voice to David’s confusion. Although the therapist could vocalize David’s fear of recovering, of returning to a functioning world, David was steadfast in his refusal to attempt eating. Discussion of the conflict between wanting recovery and yet fearing progression was attempted but David began to display extreme anger and aggressive outbursts. With tears streaming down his face, his frustration was evident both at feeling forced to eat and at his inability to express himself fully. This anger presented a difficulty for the continuation of explorative therapy sessions and sessions focused more on holding, providing secure boundaries and enablement of his anger.
David’s anger turned to fear as his feeding tube was removed and staff hoped that he would begin to eat before the operation was scheduled to take place. David went for 5 days without touching any food and lost weight so dramatically that the tube had to be returned. Through the now frequent use of using fingers to indicate letter numbers, David talked of his fear of progression, his fear of illness, and the sadness that weakness brought upon him. He talked about his desire to recover and be healthy, but he found it difficult to conceptualize the dichotomy. David was in a state of stalemate between the two opposing stances and this resulted in an inability to make any active progression.
Verbalizing the dichotomy and enabling progression without presumed recovery seemed to free David to make tentative steps toward progression. Immediately after the dichotomy was raised in therapy, he agreed to attempt to write and, in subsequent sessions, he began sucking simple food and drinking. Progression was only possible when it was accompanied by discussions about his need to feel in control, his intense fear of progression, and his need for distraction to distract from the targeted behavior. The intensity of both discussions and progression in therapy sessions demanded that elements of relaxation and relationship maintenance be introduced and these included reading out loud and “chatting” during stressful periods such as eating. Placing food next to David to allow him to make the decision to eat was not effective because this meant he had to make the decision to progress. On the contrary, when the therapist made food to eat together, he expressed the expectation that he would join her in eating, verbalized his difficulty, but persevered with the expectation, David began to eat.
Eating was a significant psychological milestone and thereon, David began to make more requests, such as listening to audiobooks. These requests were utilized to make visits to the hospital schoolroom and facilitate further progression. In a dyadic session with his mother, the therapist encouraged her to tell stories about David growing up and he became excited by the prospect of her bringing in his photo album. The photo album then became a catalyst for him to begin opening his eyes, at first with his fingers and eventually independently. Every time David experienced and acknowledged progression, he experienced a mild to moderate regression before the trajectory of progression continued. He protested what he experienced as being “forced” to open his eyes. He cried, thrashed his body around the bed, attracted the attention of other staff, but the following session was compliant.
Family therapy
During this period, another experienced family therapist joined the parental sessions to prepare for a joint meeting between both parents and David. The difficulties David experienced trying to control his parental relationships (for fear of loss of both parents) were discussed and the parents were encouraged to work together to understand David’s experience. As opposed to previous sessions which were generally carried out separately, having Rachel and Gideon sit together was extremely challenging. While Gideon was direct in his approach toward Rachel, Rachel would shut her eyes and practice yoga breathing. Both these behaviors made it difficult for them to see David and understand his needs and would result in fraught arguments.
Stage 4: Graded Exercise and Cognitive Restructuring (Weeks 16 to 20)
Functioning
David was now eating slowly, sitting propped up in bed, and had scheduled time in the schoolroom, lounge area, and on trips in the hospital grounds. David began talking.
Therapeutic goals
Due to the waves of progression and regression, using perseverance, boundary setting, and the continuous attempt at small targets, David and the team (including parents) begun to set weekly and then daily goals. Within therapy sessions, David was to practice and attempt the initial challenge and then continue usage outside of the therapy session.
Daily activity
David’s increased interaction with the ward made him both friends and enemies. He returned to his role as the family clown to some effect but so too created antagonism among other patients and staff. He began to demonstrate his former zest for life but still was very hesitant of progression.
Individual treatment
Therapy sessions continued to focus on the thoughts which arose when David considered recovery, and rather than one- or two-word answers, he began to talk about his fear of losing his father once he started eating and the difficulty he had in making decisions for himself (committing to a decision). A joint session with David’s father was arranged whereby Gideon was coached to talk to David about not leaving him and working with Rachel to create a more appropriate visiting schedule. While Gideon refused to express that eating properly was to be a condition of evening parental visits, he agreed to be present when this condition was stated by the therapist. At the same meeting, David agreed to begin eating properly and his demeanor changed. Rachel was invited to join the meeting and David reeled off a complex list of requested foods (via signing) and a weekly food schedule was arranged with both parents.
Progression and the increased opening of his eyes enabled the use of a laptop to type and communicate. David could talk in greater detail about his emotions and discuss how previously he was only able to feel release from emotions through his body (e.g., he described urination as a release for anger) and now could talk about them. Despite this increased ability to communicate, discussion about emotions was still difficult and was combined with relaxation, looking at photos, walks around the hospital grounds (which he rejected at first but then came to enjoy), and listening to books being read to him. He described how the months of silence were spent planning recipes in his head and how he spent the time listening to all that was going on around him (including an acute understanding of the social codes on the unit).
Now David was eating, sitting upright, and keeping his eyes open; discharge was contingent on two major goals: walking and talking. As part of his weekly goals, David chose to begin talking, first enunciating sounds, then short words (he chose “Mum” and “Dad” as the initial verbalizations), and then whispered sentences. Although the barriers toward holding a full conversation (and walking) were arbitrary, allowing him the graded progression enabled him to gain in confidence and removed some of the pressure. He was soon talking in sentences (albeit whispers) and began to joke again.
Family therapy
Therapy continued with attempts to bridge the vast gaps between David’s parent’s points of view. Sessions focused on practical goals and begun to also include sessions with David whereby the weekly goals were discussed.
Stage 5: Culmination of Therapy (Weeks 20 to 24)
Functioning
David progressed from wheeling himself in his wheelchair to standing to walking with a frame. He was fully active in all the daily activities on the ward and began to make home visits.
Therapeutic goals
Given the impending home visits and eventual discharge, a major goal of therapy was to begin to process his traumatic experience over the past months and begin to make sense of how he came to experience such difficulties. David was also encouraged to talk about his needs from his parents and form an appropriate visiting schedule.
Treatment on the ward
Along with David’s newfound ability to talk normally among the other children, he also displayed an increasing lack of tact and was often taken aside when he made unhelpful comments, especially to those children suffering from anorexia. He displayed quite flirtatious behavior with senior staff members and tested boundaries on a frequent basis.
Individual therapy
Around the time that David had mastered talking, his therapist informed him that she was leaving the ward. His initial response was an initial exaggerated display of indifference (“I don’t care!”), he then paused and stated “good people always make bad decisions in the end.” David was able to talk with the therapist about how much he felt he had accomplished with her and how it was difficult to contemplate finishing the journey without her. During the following dyadic session with his mother, David requested that she be told about the therapist’s imminent departure and together the three discussed this meaningful relationship. It was hard for David to talk in further detail about the departure and culmination of therapy though he was able to define why the relationship was meaningful to him: “because you loved me.” The final period of therapy was carried out by a new psychologist who accompanied him through the transition to life living back at home and continued processing his traumatic experiences over the previous periods. The shift in therapist also enabled a shift to a more traditional psychotherapy setting, in the therapist’s office, using spoken word and twice weekly, 50-min sessions.
Family therapy
In addition to discharge planning, both parents talked about fears of regression and returning to their former routine. Rachel expressed a strong fear of David regressing upon discharge and was concerned that Gideon’s involvement with both children would diminish.
8 Complicating Factors
For David, it was clear that an integrative approach was necessary to enable his cooperation and trust in the program. Although an initial relationship was built between both David and his individual therapist, and David’s parents and their family therapist, there were many unresolved conflicts between the therapeutic, nursing, and family teams which hindered the successful implementation of a cognitive behavioral program and reflected the chaotic family relationships which David experienced at home. While on one hand, the psychoeducational component of treatment focused on reframing David’s interpretation of his physical weakness, on the other hand, he was receiving constantly conflicting messages ranging from fear that overexertion would further exacerbate his symptoms through to disbelief and claims of malingering.
Teamwork is crucial in providing a stable environment when the patient is overwhelmed by the undoubtedly numerous explanations for their ill health (in David’s case, this began far earlier than admission and included many specialist doctors, psychologists, psychiatrists, and, in turn, inpatient consultations). Understanding both the patient’s and the team’s limits and finding, a middle ground proved to be a critical element of David’s treatment plan. The psychiatric ward is relatively small and the staff place great emphasis on developing and maintaining a close working environment with frequent team meetings and supportive activities. This proved to be crucial in counteracting the heightened emotions which were raised during David’s care and maintaining a supportive working environment.
9 Access and Barriers to Care
Due to David’s complete lack of physical functioning, treatment had to occur in a medical setting. While treating David’s condition at home would have been preferable, the homely nature of the psychiatric ward within the children’s hospital provided some semblance of normality away from the life and death care on the medical children’s ward. Parents were able to visit frequently and the hospital was close to their homes thus travel did not prove to be a barrier to care and parental involvement.
Given the limited resources to deal with complex nursing needs on the psychiatric ward, the parents had to be more involved than planned with intimate care needs. Hospital-based treatment impeded the ability to return to normal life gradually, and despite a gradual discharge, ultimately, there was a large difference between hospital life and home life.
10 Follow-Up
Upon discharge, David completed the CDI, Parental Bonding Instrument (PBI), and the SCARED. David did not demonstrate any clinical anxiety or depression and demonstrated satisfaction in his relationships with both parents (see Table 1).
Discharge Assessments.
Note. SCARED = Screen for Child Anxiety Related Disorders; CDI = Child Depression Inventory; PBI = Parental Bonding Instrument.
Upon discharge, David physically showed few signs of fatigue nor did he display any regressive symptomology indicative of his admission. He had regained full functioning (talking, eating, drinking, walking) and had returned to school. School reports described an active participant and he began to rebuild his social life.
One year following treatment, David is still attending school regularly, attends weekly psychotherapy and family therapy sessions, and maintains his physical improvements. David still struggles with regulating his emotional experiences and his close bond to the hospital team means that he sometimes expresses strong desires for re-hospitalization at times of extreme emotional distress.
11 Treatment Implications of the Case
Five clear stages of therapy can be seen from the above case study: a long period of relationship formation and assessment, behavioral activation and paced activity, integrative psychotherapy combining a CBT and dynamic approach, and an eventual integration of behavioral activation leading to the culmination of therapy.
David’s treatment presents an example of the treatment of a complex combination of psychiatric presentations. It presents an example of combining treatments to fit with a developing understanding of the patient’s psychogenic personality structure rather than reacting solely to a psychiatric diagnosis.
Treatment began from a state of confidence based on CBT treatment guidelines for Chronic Fatigue Syndrome which works on gradually pacing increased activity with a change in interpretation of symptoms and the associated fear, symptom focusing and avoidance common in this condition (NICE, 2007; White, Goldsmith, Johnson, Chalder, & Sharpe, 2013). This reframing is also crucial in treating complex conversion disorders and thus formed the basis of the initial treatment plan (Nicholson, Stone, & Kanaan, 2011).
Although already integrated within the initial treatment plan, providing a central focus on mentalization and attachment deficits (Luyten & Van Houdenhove, 2013), specifically focusing on the mentalization of self (Fonagy & Bateman, 2012), proved to be a turning point in David’s therapy. The progression to a more psychodynamic-orientated treatment which used David’s frequent reactions to the therapist and his therapist’s ability to reflect his experience, provided David the self-mirroring which was crucial to his development and confidence to tolerate failure (Kohut & Wolf, 1978). Not only did it enable him to develop a sense of being understood but he could touch upon his weaknesses which until then had been avoided, shutting down rather than confronting his less-than-perfect self. David was able to confront his difficulties while not hurting his self-worth (Pincus & Lukowitsky, 2010).
12 Recommendations to Clinicians and Students
This case study provides a range of etiological factors for clinicians faced with somaticizing patients to consider. David’s case raised difficulties in early attachments, emotional expressions, mentalization and issues of control, learned helplessness, and self-worth. These elements all needed to be addressed in therapy which was largely explorative, nonverbal, and hit-and-miss at the outset.
Crucial to this case was the development of an integrative approach whereby the therapists’ knowledge of CBT, psychodynamic, and mentalization-based therapies enabled a flexible approach to therapy, adhering to evidence-based practice as well as reacting to David’s changing therapeutic needs as he progressed. The constant movement between demands of behavioral activation and high levels of acceptance of David’s difficulties enabled both validation of pain and confrontation to enable change (Linehan, 1993). Likewise, the movement between known psychotherapeutic principles and evidence-driven understanding of emotional and psychological processes enabled the movement between different therapeutic techniques (Boswell, 2017) combining self-discovery (generally dynamically orientated), self-management (generally CBT and interpersonally orientated), and the development of psychological distance from problematic patterns of behavior (Critchfield, Mackaronis, & Benjamin, 2017). Utilizing integrative therapies has been documented for chronic pain (Coren, 2016), anxiety (Glock, Hilsenroth, & Curtis, 2017), schizophrenia (Hasson-Ohayon, 2012) among other complex disorders. With the advancement of an ever-increasing number of psychotherapeutic techniques and therapeutic professions, it is easy to develop tunnel vision for one’s own therapeutic niche and focus on defending its effectiveness rather than embracing collaboration (Wachtel, 2017). Being part of a team comprised of psychodynamic, analytic, cognitive-behavioral, and artistic therapists provided a complex appraisal of David’s treatment strategy and embraced using the most appropriate techniques to further recover and analyze the benefit (and harm) of one treatment style over another.
Working with a noncompliant and noncommunicative patient involves introducing a range of strategies for communication. First, the therapist’s frequent presence enables a level of trust to be developed in a comparatively short amount of time. With such an antagonistic patient, the therapist requires a willingness to withstand attempts to “test” the relationship and in this case involved working with unpleasant bodily emissions and attempts of rejection. Communication needs to encompass verbal and nonverbal codes. It is common for CBT therapists to use metaphor during the course of a therapy session (Mathieson, Jordan, Carter, & Stubbe, 2016) and their use in case formulation and communicating the therapist’s understanding of the patient’s narrative, unhelpful cognitions and maintaining behaviors can make the communication less threatening (Blenkiron, 2005). Working with metaphor and storytelling enables an initially one-sided conversation and subtle readings and verbalizations of nonverbal communication allowed the development of a mutual conversation.
Despite David’s chaotic presentation and seemingly helpless predicament, the adherence to boundaries of acceptable and unacceptable behavior, predictable scheduling and roles among team members created a semblance of order and control which, until hospitalization, was determined by David himself. This article outlines the difficulties of this in practice and we acknowledge the troubles that our team faced. Working with a child who elicits such highly charged emotional responses (both positively and negatively) can have a strong impact on team dynamics and these need to be recognized from the outset. Putting in place forums for supporting the nursing team, who often deal with the brunt of the patient’s anger and frustration, together with increased physical needs, is necessary from the outset and may prevent splits developing within the treatment team.
Although boundaries and clear expectations were crucial in treating David, so too was flexibility and willingness to give-and-take. Verbal communication was the ultimate expectation for normative dialogue, but it was understood that David needed to slowly work toward this goal. Working from sign language to letter–number codes to typing to whispering and then finally normative dialogue enabled David to build up to reconnecting with the world. Likewise, maintaining clear expectations of eating normally while enabling David to move from a boiled sweet to sucking foods to larger food items and attempting this repeatedly in different formats led to eventual progress.
David’s case was extreme and challenged even the most experienced of team members but taking time to understand the complex family dynamics and personality structures which contributed to his presentation was crucial to treatment. David’s case highlights the needs to take time to formulate a complex case conceptualization, form a strong relationship with both the patient and their family, and use this understanding to inform treatment decisions. The correct clinical decisions may be implemented, but without the whole team and family on board, the chance of success is sorely impaired.
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
