Family Intervention in the Care of a Patient With Nonepileptic Seizures
“Dr. B,” a consultation-liaison psychiatrist, was consulted on “Ms. A,” a 24-year-old single pregnant white woman who had received a new diagnosis of nonepileptic seizures (NES). Although Ms. A’s NES events began several years ago, the changing nature of her seizures led her neurologist to admit her to the epilepsy monitoring unit. Ms. A and her mother had described all the types of events that Ms. A experienced, from mild twitching of her right side to full body events. All her events were captured during her hospital stay, and no epileptiform activity was noted.
Ms. A and her mother accepted the diagnosis, which was delivered by the neurologist on the epilepsy monitoring unit and followed up by a DVD created for patients with NES. Most patients have family members present at this time, making family inclusion a natural part of inpatient care. Recounting her history, Ms. A said, “A lot happened from when I was 4. I was molested by day care providers, my dad died, in total seven other people died. My mom was stalked, so she wouldn’t let me play outside. I was stalked and harassed in fifth grade by a classmate. At age 13, I had PCOS [polycystic ovary syndrome], and they threw hormones at me. I heard voices to get a gun and shoot myself in the head. I was taken off all my meds.… I’ve had a diagnosis of depression since age 4, PTSD since age 15, bipolar disorder with depression from age 16, and borderline personality disorder. I was manic when I was a teenager, after more deaths, sexual assaults, and after a guy I knew committed suicide.”
Her history included eight inpatient psychiatric admissions, a year in residential care at age 16, and a family history significant for unspecified mental illness, addictions, and suicides. She has been on disability for 2 years for bipolar disorder and PTSD and has worked only intermittently, in entry-level jobs. She has completed some college. For the past 2 years, her mother has been her paid caregiver. Her closest support is her mother, but they have a “complicated relationship, with much tension.” She lives with her mother and her brother, who was recently released from jail. The patient has had no contact with her father and does not know his whereabouts. Her ex-boyfriend and father of the child currently lives with them but is planning on moving out soon. Regarding the pregnancy, he had wanted Ms. A to “get rid of it,” but Ms. A, with the support of her mother, wanted to keep the baby. The ex-boyfriend does not intend to support the child. Ms. A and her mother were in agreement about his leaving. The brother has a job, but the patient and mother believe he uses his money to support his drug habit. He does not contribute to the household, is rarely home, and leaves his dog for his sister and mother to care for; he avoids his parole officer and is in danger of being returned to jail.
Ms. A reports chronic anxiety, depression, insomnia, and hallucinations but states that these symptoms are currently well managed. Her outpatient psychiatrist was contacted and reported that the patient is being treated for bipolar disorder and PTSD, and despite the failure of multiple trials of medications in the past, she is doing well on her current regimen of two anticonvulsants and an antipsychotic for her diagnosis of bipolar disorder. She has medical diagnoses of hypertension, obesity, migraine, and scoliosis. She attends a mental health center, sees her psychiatrist weekly for support and medication management, and is currently attending a dialectical behavior therapy group three times a week. The outpatient psychiatrist was fully supportive of the NES program and indicated that the patient would reduce her individual work while she attended the NES clinic. The two psychiatrists agreed to be in touch as needed. The NES program (1) provides a discharge letter to the treatment team who will assume care, indicating treatment response and specific recommendations for ongoing care. On referral to the NES clinic, Ms. A remarks sarcastically, “Therapy for NES? Tell me something useful.”
The NES clinic is a 6-month program that includes individual therapy, family therapy, medication management, a 5-week psychoeducational group therapy, and a 12-week psychodynamic group therapy. The team meets weekly to discuss patients’ progress. The protocols for the psychoeducational sessions and the psychodynamic therapy sessions are outlined elsewhere (1). In brief, the psychoeducational sessions are formalized, with handouts and homework. After completion of these sessions, suitable patients are enrolled in the psychodynamic group therapy. When patients are enrolled in the NES clinic, the patient and the admitting psychiatrist develop a treatment plan to meet the patient’s needs. (The NES program began within the past year and outcome data are not yet available.)
Ms. A was enrolled 3 weeks after consultation with Dr. B, and the first step was enrollment in family assessment and treatment, because she and her mother identified family conflict as the major trigger for her NES events. Ms. A’s continuous NES events needed to be reduced before she could participate in group therapy. The NES events are not addressed directly in the family assessment and treatment; rather, the focus of the family assessment is to help the family develop an understanding of their strengths and weaknesses and problem-solve their current difficulties. The hypothesis is that reduction of family conflict will reduce the frequency of NES events.
Family functioning is assessed broadly across six dimensions. Special attention is paid to family strengths that can be mobilized to problem-solve the family’s difficulties and to reinforce their motivation for change. The dimensions assess problem-solving skills, the division of family roles, communication style, rules (behavioral control), the family members’ emotional/affective involvement with each other, and the predominant emotions expressed in the family. Family functioning is scored with the McMaster Clinical Rating Scale (MCRS) (2), a seven-item scale completed after an in-depth family interview. A score below 4 indicates unhealthy family functioning, and a score of 4 or above indicates healthy family functioning.
The following is a summary of the family assessment; only the mother and the patient attended, as the ex-boyfriend was leaving and the brother’s whereabouts were unknown.
Session 1
Problem solving: Problem solving is adequate from the practical standpoint, with the mother making most or all of the major decisions. Emotional problems are identified but not communicated clearly or solved. Neither the ex-boyfriend nor the brother participates in problem solving. The MCRS score is 3.
Roles: The mother does most things, and Ms. A does what she can. The mother is overwhelmed with her responsibilities; she tries to give some responsibilities to Ms. A, depending on the severity of her NES symptoms, which vary from day to day. The mother is a paid caregiver for her daughter, cares well for her, but practices poor self-care. They both want to be able to care for the baby as best as they can. Neither the ex-boyfriend nor the brother has any roles. The MCRS score is 3.
Communication: Communication is clear and direct when it occurs, but the mother does not express her feelings, as she is afraid to upset her daughter. Ms. A is frustrated because she cannot talk to her mother, who gets easily overwhelmed. The ex-boyfriend and the brother do not communicate with the mother or the patient. The MCRS score is 3.
Affective responsiveness: Most of the time, the mother is sad, angry, or afraid. She is afraid that her daughter will hurt herself when she has an NES event, and she worries about the future difficulties of caring for the baby. Ms. A is happy “a good part of the time” but becomes distressed—i.e., angry, sad, and worried—which leads to an NES event. There is no information about the ex-boyfriend or the brother, as they did not attend. The MCRS score is 2.
Affective involvement: Ms. A and her mother have similar interests, such as favorite movies, but they do not spend much quality time together, and they would like this to improve. Their involvement is characterized as empathic, meaning that they truly care for each other. (This dimension measures emotional involvement, from lack of involvement to overinvolvement, with empathic involvement being the healthiest.) The ex-boyfriend and the brother are not involved in the family. The MCRS score is 4.
Behavior control/rules: Ms. A and her mother agree on house rules and identify areas of difficulty, such as the brother being in the house, frequent name-calling when people get into arguments, and a general lack of respect. There are concerns about the brother not being responsible for his dog, not picking up his things, and not participating in chores or paying for anything; there is difficulty enforcing rules with him. The ex-boyfriend is not involved. The MCRS score is 3.
Dysfunctional transactional pattern: The dominant transactional pattern describes the cycle that the family displays that perpetuates their main areas of difficulty. In this family, the pattern is as follows: Ms. A’s illnesses, especially her NES, frighten her mother, who tries to protect her daughter by not expressing her feelings and anxieties. Ms. A is aware that her mother keeps things to herself, and she is concerned about her mother’s well-being, so she avoids talking about emotional issues, resulting in more NES events. The overall MCRS score is 3. Of note, the family strengths are their empathic caring of each other and their enjoyment of spending time together.
Problem list:
1. Communication between Ms. A and her mother, while clear and direct, does not happen frequently enough. Emotional problems are not communicated, because they are too upsetting and the family does not know how to deal with them.
2. Both Ms. A and her mother report difficulty coping with Ms. A’s medical and psychiatric illnesses.
3. The brother is currently living in the house, and Ms. A and her mother disagree about whether or not he should be there.
4. The mother feels overwhelmed and feels unable to manage practical and emotional problems, although she is meeting both their needs adequately.
The development of a written problem list helps families make sense of their challenges. In this case, the challenges around the brother are presented in a neutral way, focusing on the lack of agreement between Ms. A and her mother. The written assessment helps the family identify their strengths. They are motivated to improve their relationship before the baby comes. The family enters family systems treatment, using a problem-solving systemic model called “problem-centered systems therapy of the family” (3). A copy of the assessment and problem list is given to each of them and reviewed at each session.
Session 2
Dr. B and the family agree to start with problem 3—the brother’s presence in the house. The ex-boyfriend has left, so the house is quieter. Dr. B invites Ms. A to start the discussion. Ms. A has more NES events when the brother is there. They both say that he avoids talking with Ms. A because she wants him to leave the house. The mother is then invited to give her point of view. She feels she is stuck between her children and has to choose between them. She wants to support her son but recognizes that his behavior is upsetting her daughter. He does not pay rent, may be using substances again, and is not complying with his parole check-ins. The mother wants Ms. A to confront her brother about his behavior, as she herself does not want to be the one to put her son out. Ms. A thinks this is her mother’s role.
Dr. B highlights the difficulty of the decision and the consequences of not deciding. Dr. B pushes them to clarify what would happen if things continue the way they are. Dr. B asks where Ms. A would go if she had to leave, and what would happen to their relationship. Ms. A states that if her mother chooses to support her son and he continues living in the house, she wants to know as soon as possible, so that she can make arrangements. She does not have anywhere to go. Dr. B asks about other family members or friends in their community. There is an aunt, but they have not spoken to her in years and they do not know where she is living. The mother knows she has to make a decision soon, so that if Ms. A needs to move out, she will have time to make arrangements. The mother spends much of the session explaining how many chances she has given her son and how he does not live up to his agreements. No decisions are made, but Ms. A and her mother are urged to come to a decision soon. This is the first time they have calmly discussed the options and consequences.
Session 3
Ms. A’s mother is still trying to decide what to do: she feels upset about having to choose between her son and her daughter. Before the session, the patient and mother successfully problem-solved how to manage conflict with the brother at home. They agreed on rules about not smoking in the house, picking up, and caring for his dog. They posted these rules on the refrigerator, and the brother agreed to abide by them. They doubt that he will comply, but they want to give him a chance.
Dr. B reviews the problem list with them and asks where they next want to focus. They choose problem 4—the mother being overwhelmed. Ms. A describes how overwhelmed her mother feels and notes that she takes no time for herself. Dr. B asks what ideas they have for solving this problem. They discuss back and forth and agree that the mother will reserve Friday for self-care, including attending her own medical appointments. Ms. A offers support and suggestions to her mother, such as taking warm baths, watching their favorite movie together, and frequent 10-minute time-outs from worrying during the day. The mother agrees to follow through with these suggestions and will use sticky notes to remind herself. They begin to discuss a plan to use a “time-out” hand sign to reduce conflict in conversation and to try to regroup in 1 hour to discuss the issue that brought up the conflict. They will do this a maximum of three times, and if they are unable to discuss the issue satisfactorily, they will bring it to the next session. It was clear that they had been looking at problem 1 and considering how to work on it. Dr. B provides supportive comments and facilitates their discussion.
Session 4
Ms. A’s mother is taking better care of herself. She plans to get her teeth fixed. She takes small breaks during the day to rest and practice lowering her anxiety. She decided to ask her son to move out. She worries about her daughter and about who will take care of Ms. A and the baby if anything happens to her, and this is her motivation to practice better self-care. She also worries about her grandchild and how they will care for the baby. Dr. B commends them on their progress, listing the positive steps they have taken.
Session 5
The mother asked her son to move out, and she set a date, although both are skeptical that she can stick to this, as she frequently backs down when he pressures her. Ms. A and her mother both want to set a daily time to talk, to try to improve their relationship. They identify a negative transactional pattern that occurs: mother is upset, vents to daughter, who takes things too personally and regresses, then mother gets upset and then they don’t talk anymore, and so on. They decide to do daily check-ins between 5 and 6 p.m. They discuss strategies for minimizing miscommunication, and Ms. A agrees to ask for clarification if something upsets her. Ms. A practices this in the session as they discuss difficult issues.
Session 6
Four months after they enrolled in the NES program, Ms. A and her mother agree that they are doing well. The mother held firm, and her son has moved out. Communication is better between Ms. A and her mother, and they are enjoying time together and preparing for the baby. The mother is practicing adequate self-care and no longer feels overwhelmed. They agree that their goals have been met and no further sessions are needed. They both feel happy with their progress. Ms. A has few NES events and can start NES group therapy.
Final Visit
Ms. A reports that her newborn son is doing well. She says that family therapy helped her have better communication and argue less with her mother. She has had no NES events since an episode when she had complications during pregnancy. She feels supported by another group member who has children, and feels that she can be a good mother, even with NES. She sees her team at the mental health center weekly. She wants to resume college courses and work toward a degree.
The patient presented in the vignette has pages of medical and psychiatric diagnoses, a long list of medication trials, and a lackluster response to treatment. In short, she is a challenging patient. This discussion addresses several questions. What was the role of family therapy for the patient? How did it help her manage her nonepileptic seizures (NES)? More generally, what is the evidence that family intervention is effective? How might sequential care and stepped models, which have been designed for single diagnoses, be used for complex patients? What is shared decision making?
How Did Family Treatment Help Ms. A and Her NES Events?
Ms. A and her mother understood that their lack of ability to resolve problems was a principal trigger for Ms. A’s NES events. The family treatment focused on understanding the family system and helping the patient and her mother decide how to manage their conflicts. Dr. B continuously pointed out the strengths of the family and their successes as they moved through treatment, thus strengthening their motivation. With family conflict and NES events reduced, Ms. A entered the 5-week group psychoeducational program and the 12-week psychodynamic group treatment, both specifically aimed at understanding and managing the NES events.
Evidence-Based Family Assessment Tools and Interventions
Family stress is recognized as a precipitant of NES events and a target for treatment (4). La France and colleagues (4) recommend a systems-based family approach, such as problem-centered systems therapy of the family, which is used successfully with patients with NES (5). The literature on types of family dysfunction in NES is sparse but includes reports of family criticalness, poor role delineation, and additional family illnesses (4). One study (6) reported that individuals with NES, when compared with epileptic subjects (N=31 in each group), had elevated scores, indicating dysfunction, on three of the Family Assessment Device scales: affective involvement (p=0.044), communication (p=0.004), and general functioning (p=0.013). Also, the families of subjects with NES had significant elevations on the roles scale (p=0.003).
The only published randomized trial for the treatment of NES (7) compared cognitive-behavioral therapy–informed psychotherapy (CBT-informed psychotherapy), sertraline, and combination treatment with both, as well as a treatment-as-usual arm. The CBT-informed psychotherapy arm showed a 51.4% reduction in seizures (p=0.01) and significant improvement from baseline in depression, anxiety, quality of life, and global functioning (p<0.001). The combined-treatment arm showed a 59.3% reduction in seizures (p=0.008) and significant improvements in global functioning (p=0.007). Neither the sertraline-only arm nor the treatment-as-usual arm showed a reduction in seizures (p=0.08 and p=0.19, respectively). Other treatments for functional neurological disorders have been reported in case reports or retrospective case series (8). Hypnosis, especially focusing on the role of suggestion for symptom resolution, is useful in the context of other treatments, such as cognitive-behavioral, rehabilitative, and psychodynamic therapy (9).
Although no evidence is available regarding the different types of family therapy that might be helpful for NES patients, a meta-analysis that included a variety of family systemic therapies were noted to improve outcomes for patients with different types of psychiatric illnesses, with stable results across 5 years (10). The meta-analysis identified 34 studies of randomized controlled trials in the treatment of mood disorders, eating disorders, substance use disorders, mental and social factors related to medical conditions and physical disorders, and schizophrenia. Problem-centered systems therapy of the family specifically is effective in the management of mood disorders. In a study of 121 patients with major depressive disorder, those who received family therapy had higher rates of illness remission (11). The mean number of family therapy sessions was five. A subsequent study of bipolar disorder, conducted by the same team, comparing two types of family treatment against a control arm of pharmacotherapy alone (12), found that in patients with highly dysfunctional families, the addition of either family intervention was highly effective (Cohen’s d values, 0.7–1.0), with patients receiving either type of family intervention having about half the number of depressive episodes and about half the time spent depressed compared with those receiving pharmacotherapy alone. In contrast, family intervention for patients from well-functioning families did not improve their course of illness, a finding that emphasizes the need to screen families.
Lastly, best practice includes the use of quality measures to assess efficacy of care. In our NES clinic, we use the 12-item self-report Family Assessment Device, which has been found to be a “good proxy” (13) for the 60-item version (14). There is also a brief six-item version (15). In a review of 148 studies, the Family Assessment Device was noted to be suitable for evaluation of family functioning in clinical and research settings (16). The review found that poor family functioning was associated with lower recovery rates, poorer adherence to treatment, longer recovery time, poorer quality of life, and increased risk of relapse and dropout. The Family Assessment Device correlates well with the initial assessment rating scale, the MCRS (2), which was completed at Ms. A’s initial family assessment. After completing family therapy, Ms. A’s perception of functioning, as rated on the Family Assessment Device, was healthy (Table 1).
| Item | Response |
|---|---|
| 1. Planning family activities is difficult because we misunderstand each other. | Disagree |
| 2. In times of crisis we can turn to each other for support. | Strongly agree |
| 3. We cannot talk to each other about the sadness we feel. | Strongly agree |
| 4. Individuals are accepted for what they are. | Agree |
| 5. We avoid discussing our fears and concerns. | Strongly agree |
| 6. We can express feelings to each other. | Strongly disagree |
| 7. There are lots of bad feelings in the family. | Strongly agree |
| 8. We feel accepted for what we are. | Strongly agree |
| 9. Making decisions is a problem for our family. | Agree |
| 10. We are able to make decisions about how to solve problems. | Agree |
| 11. We don’t get along well together. | Strongly disagree |
| 12. We confide in each other. | Strongly disagree |
TABLE 1. Ms. A’s Responses on the General Functioning Scale of the Family Assessment Device After Completing Family Therapya
The Family Assessment Device is one of five self-report measures appropriate for clinical use (17). Of note, cultural variations occur in samples of healthy families. In a Chinese sample, all healthy families expressed dissatisfaction with “setting family rules” (18), and this dissatisfaction was considered a normative finding (18). Family self-report scales therefore require cultural calibration.
Sequencing and Stepped Care
Sequential treatment is a strategy for patients with single chronic illnesses such as major depressive disorder (19). This strategy uses pharmacotherapy in the acute phase of depression and CBT in the residual phase of depression, and it is especially effective for recurrent depression (20).
In contrast, a stepped-care model offers an initial low-intensity evidence-based treatment, with monitoring and steps up to a higher-intensity treatment if needed. A systematic review and meta-analysis (21) of all randomized trials of stepped care for depression (N=4,580) found a moderate effect on depression, but the interventions varied in number, duration of steps, treatments offered, professionals involved, and criteria to step up, making it difficult to extract practice guidelines from the results.
What is our best pathway for helping patients like Ms. A, who have multiple diagnoses and psychosocial adversities? For NES, Milán-Tomás and colleagues (22), noting that there is no current standardized treatment, recommend an algorithm that starts with a neurological diagnostic evaluation, followed by a detailed discussion, then referral to psychiatry, which then decides on the appropriateness of individual psychotherapy, family therapy, and medication as needed for comorbid diagnoses. This algorithm is an overall management algorithm but does not include a psychiatric algorithm. For psychiatry, the question is whether to start with medication and/or individual, family, or group therapy. For a family psychiatrist, the starting point is family inclusion, ideally followed by a family assessment. Simple family inclusion produces more engagement in care, better adherence, and better understanding of the illness and helps manage patient and family expectations about recovery, increasing the likelihood of successful adaptation to chronic illness (23).
Shared Decision Making
Our NES clinic encourages the patient, the family, and the psychiatrist to discuss treatment options together. Shared decision making is a central component of the recovery paradigm and is used in the management of medical (24) and psychiatric illnesses (25). Shared decision making provides a therapeutic space to discuss, deliberate, and express preferences and views. The evidence base, or lack thereof, of specific treatments must be articulated. In the case presented here, Ms. A expressed a desire to have family intervention prior to any other intervention. Respecting “what matters most” to patients as individuals facilitates treatment, encourages questions, and results in a stronger stake in treatment outcome.
In general, including family members in shared decision making leads to greater understanding of the diagnosis and treatment options, and family members contribute an understanding of the person’s actual level of functioning and the family’s cultural values, an important perspective. An agreement between the patient and family members about their respective roles reinforces progress toward wellness. For NES patients, the use of care plans provides confidence in managing NES (26). The mismanagement of patients with NES is costly and not without risk; statistically, patients with untreated NES have twice as many emergency department visits as patients with comparable diagnoses (27).
Summary and Recommendations
When should psychiatrists involve the family? Include the family at the first interview to enlist their help in illness management. Good illness management questions are: “Do you all agree when your family member has symptoms? Do you all agree on how to manage the symptoms? Is there a treatment plan, and if so, do you all know what it is?” Families will ask questions like “What if he wants to be left alone, should I worry?” The skills needed for family inclusion are basic interview skills of managing difficult emotions and conversations and keeping an interview on track (23).
The evidence for the efficacy of family intervention is substantial, yet most psychiatrists are not trained to provide family interventions. A stepped model is recommended, with the first step being family inclusion. The second step is family psychoeducation, which is within the skill set of all psychiatrists. There are several clear, manualized descriptions of how to deliver family psychoeducation (28; see also http://www.ouhsc.edu/SafeProgram/). The need for psychoeducation can be identified by assessing the family narrative. A family narrative about an illness is a window onto the family’s sense of confidence and efficacy in managing chronic illness (29). The presence of a coherent story that has an illness plan of management indicates a family at lower risk. High-risk families appear disorganized and/or traumatized and have no coherent illness management plan. The presence of significant conflict at a routine interview, identification of family issues that interfere with illness management, and an inability to identify and agree on problems are indicators for referral for family systemic therapy (23). As with all clinical situations, if there is no family dysfunction, family intervention is unlikely to be useful.
Psychiatrists are frequently asked to treat patients who have not responded to simple interventions, resulting in the need for strategies to manage complex disorders. For NES, the first step is to ensure that the diagnosis is accurate, with documented EEG results from a neurologist. Treatment of medical and psychiatric comorbidities is essential. With guidance, patients and families can come to understand the psychopathology related to the onset and perpetuation of NES events and begin to work on management of the precipitants of the events. Families can be screened using the Family Assessment Device or other tools to determine whether family therapy is indicated (17). A care plan (26) helps the patient and family manage the stress of having NES events in public.
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