Care of the dissociative identity disordered patient on a medical-surgical unit: nursing implications.
Within the last 2, decades or so, the dramatic portrayal of multiple personalities has been brought to the public's attention in numerous television movie specials. Arguably, the most talked about movie, "Sybil," based on the book of the same title (Schreiber, 1973), brought the disorder not only to the public's attention but stirred the professional community as well. Since then, DID has been brought to the forefront of the mental health field. Kluft (1987) suggests that "this condition is not a rarity but that its manifestations, often coexisting with or obscured by other phenomena, frequently go unrecognized for years within the mental health care delivery system" (p. 363). As women have become increasingly represented in the mental health professions, coupled with a rise in feminism, serious attention has been paid to the existence of DID (Kluft, 1987), a condition with a reported 9:1 ratio of females to males (Greaves, 1980). Ross (1991) reports that dissociative disorders affect up to 10% of the population. In a recent study of 102 DID cases (92 females, 10 males), the connection between being a victim of child abuse and developing DID was clearly demonstrated by Ross et al. (1990) who found that over 95% of their research sample of 102 DID patients had been physically and/or sexually abused as children. This is not to say that all, or even most, victims of child abuse develop DID. They do not.
Dissociative identity disorder, more than any other psychiatric disorder, is associated with the sufferer having been the victim of child abuse Cross et al., 1990). Underlying the development of DID is that a history of abuse, possibly physical, sexual and emotional, during childhood was coped with by becoming psychologically disconnected, or dissociated, from the terrorizing experience from which the victim was helpless to prevent and could not escape. This sense of powerlessness is the point at which traumatic reactions begin. During victimization, the complex human self-defense system is overwhelmed and disorganized, resulting in symptoms being disconnected from their source (Herman, 1992). These symptoms do not go away (Terr, 1988) and instead develop into, among other things, separate and distinct personality states, also referred to as alters, which periodically take control of the person's behavior. As a result, the victims are psychologically fragmented, unable to integrate the memory of the events that had so terrorized them (Herman, 1992). This also accounts for the amnesia and problems in recalling even basic information about one self that these patients have.
Each personality state has a unique identity that includes a separate personal history, age, self-image, and even a separate name. Some of the personalities may be named for their function. For example, some common functions include protector, aggressor, persecutor, and helpmate (Putnam, 1989). There is usually at least one bad or "evil" alter and one good alter. It is common for alters to communicate with one another. This may occur through internal dialogue or through an alter simply taking control (Curtin, 1993). The patient may have amnesia for part or all of these events. Integration of personalities can, however, occur with psychotherapy. The prognosis for DID sufferers when treated by practitioners competent in this area is optimistic. Typically, however, disintegration occurs during periods of stress. The following case history illustrates this phenomenon.
(All names have been changed for confidentiality.)
Gail, a 36-year-old white female, who was born deaf (see Phillips, 1996 for a discussion of deaf culture and medical crisis), was admitted to a medical-surgical unit complaining of abdominal pain. Her diagnosis was confirmed as appendicitis and she underwent an appendectomy. Her diagnosis of dissociative identity disorder was unknown at this time. Her postoperative recovery phase was unremarkable and she was discharged from the hospital after a short recovery period. During this time she was cooperative with nursing and medical plans of care. She was given the usual amenities offered to hearing-impaired patients (TTY, pad and paper, etc.).
Four weeks later she was again admitted to our unit complaining of abdominal pain. Once again she was cooperative with nursing and medical plans of care. Following a work-up, the surgeon determined that a portion of Gail's small intestine had become twisted and she had lost a considerable amount of blood. She was scheduled for an exploratory laparotomy and underwent a partial colectomy. Following surgery she was admitted to the intermediate care unit (IMCU). It was at this point in her hospitalization that the staff began observing behavior problems with Gail. She became combative. She pulled out her intravenous lines and her nasogastric tube and intermittently refused to cooperate with staff.
After 11 days in the IMCU, Gail was transferred back to the medical-surgical unit. She continued to be intermittently uncooperative and disruptive. During this time she contacted her health care advocate. Laura, who was able to communicate with Gail through American Sign Language, requested a meeting with the director of the medical-surgical unit to discuss Gail's care. In this meeting the director learned of Gail's DID diagnosis. Gail had been seen briefly by a staff psychiatrist for continuation of antidepressant drug therapy she had been previously taking. The staff psychiatrist had not said anything about DID to the medical staff (surgeon or internist) or nursing staff and it is unclear whether he was even aware of the DID diagnosis. The health care advocate was totally unaware that Gail had previously been hospitalized for her appendectomy and only recently had known about the exploratory laparotomy. Gail's primary psychiatrist did not have admitting privileges at our institution and was not aware that Gail had been admitted.
Gail reportedly had 16 to 18 alters. Thirteen were identified during her 41-day hospitalization. Particular identities emerged in specific circumstances and differed in reported age and gender. At least six of Gail's personalities were teenagers (four female and two male). Four were children (ages 3-6, three female and one an autistic male), and at least three were female adults. Her combative nature when a patient in the IMCU, and noncompliant and disruptive behavior on the unit had apparently been one of the smaller children emerging. Quickly, a major issue became the identity of the person that staff was dealing with at any given time. The individual that staff had been addressing as Gail, was actually Sheila. The primary personality, Gail, had chosen for many years to stay "asleep" and to allow Sheila to handle the day-today decisions for the group of alters, her "family."
The director and educator immediately focused on the special needs of this patient. Due to the sensational nature of her psychiatric diagnosis, a decision was made to limit knowledge of aspects of the patient's history to those staff who were directly caring for her. The clinical education specialist educated staff and discussed management of the patient's care. The following nursing interventions were implemented:
1. The director notified the patient's physicians of the complex nature of the "family" they were caring for and provided information regarding the nursing plan of care (see Figure 1). 2. An interpreter was available a minimum of 3 hours per day with an on-call service available. Attempts were made to coordinate physician visits with the interpreter's availability. 3. A booklet was prepared for the patient with detailed statements (I need..., I want...) to facilitate quick communication. 4. Notepads and pen were always available at the bedside for ease of written communication. 5. An attempt was made to have the same nurse and patient care technician assigned to do care. 6. Staff were instructed to always tell her what they were going to do before beginning a task or procedure. 7. The director, the health care advocate, and the patient established an informal contract regarding which one of her personalities would make decisions for the "family," communicate with her doctor, take her medications, and sign consent forms, as well as communicate with the rest of the "family." In addition, the patient agreed that she and the other alters would maintain integrity of all invasive lines and tubes and refrain from pulling them out. 8. A hand motion in the shape of a "T" (for time out) was used when the patient was overwhelmed and at least 5 minutes were allowed for the patient to understand and accept whatever was happening.
Sheila was a rather passive alter, seldom initiating any interactions with the staff, although she interacted normally with Laura, her health care advocate. Communication with staff occurred only through written methods or through an interpreter. During this time Sheila was anxious but cooperative and appeared to be in control of the "family." She seldom smiled, and used small, contained gestures when communicating. It was at this point that her sister came to visit her She was also deaf and was not aware of the DID diagnosis. Nursing staff had to be more vigilant that nothing was put in writing, or said via the interpreter that would breach confidentiality regarding the DID diagnosis when her sister was present.
Two weeks later, Gail/Sheila again developed severe abdominal pain, with a spiking temperature and elevated white blood count. Her physicians diagnosed yet another occurrence of strangulated bowel and recommended another exploratory laparotomy. Laura and the director of the unit had a long discussion with Gail/Sheila regarding what was happening and what needed to be done. Sheila and Laura felt that due to the extreme nature of the current problem, Laura needed to discuss the situation with more of the "family." Laura asked for specific individuals to present themselves. The director then explained to whichever personality came out, what had happened, the surgery that was needed, and secured her/his approval for Sheila's decision. The explanations were tailored for the specific ages of the alters that appeared. Finally, Sheila decided that she needed a rest, and that a different, more assertive personality, Marsha, would take over the care of the "family" from that point on. Marsha was the final personality to appear. While she did agree to the surgery, she was also the first alter to object to the director and staff knowing about her. She was less trusting and more aggressive than the alters that staff had dealt with previously. She agreed to the same informal contract with the director to which Gail/Sheila had agreed. Through comments made by Marsha, it was very obvious that Marsha and Sheila were in frequent contact with each other regarding the situation. Her primary psychiatrist confirmed the belief that Marsha and Sheila frequently discussed issues with each other.
Gail's surgery required removing the last foot of terminal ileum and first few inches of the cecum. Her temperature spiked to 101 degrees F the first day postoperative and heart rate was in the 110-120 range. In addition to a nasogastric tube, she was also on total parenteral nutrition, antibiotic therapy, and intravenous fluid replacement via a central line. Her postoperative management included pulmonary toiletry and increased activity as well as aggressive wound management secondary to an open abdominal wound.
Throughout her hospitalization Gail was not identified as being at risk for suicide. She did suffer from periods of depression as evidenced by her lack of interest in providing self-care and by wanting to sleep a great portion of the day. Ninety percent of patients diagnosed with DID also meet diagnostic criteria for depression or anxiety disorders (Kluft, 1987). Her psychiatric history entailed management with phenothiazines and antidepressants. During the surgical periods of hospitalization, Gail became increasingly stressed, withdrawn, and detached. During periods of extreme stress, various other alters, including the children, manifested themselves. Sometimes this occurred as a rapidly changing kaleidoscope of personalities. Marsha, the aggressive alter, asked frequent questions wanting to know every intervention that was being done and why. Her entire demeanor was significantly different from the more usual alters staff had been dealing with. She held her body upright and straight, used exaggerated hand gestures, and looked around with short, quick glances. She was also more vocal with the staff than Sheila had been, especially as she began trusting the staff.
Early identification of Gail's diagnosis would have been of great benefit in tailoring her care. Staff agreed that this knowledge would have better prepared them for the problems surrounding her multiple personalities. It would have facilitated the immediate involvement of the health care advocate, the social worker, and various treatments and therapy In addition, this would have been a perfect opportunity to coordinate staff education with the psychiatrist and perhaps invite an outside expert to present an inservice.
Communication was identified as an extremely important aspect of care. Communication fell into three distinct areas.
1. With staff and physicians: No one in the hospital, including the physicians (except psychiatrist), had previous experience with a DID patient. Initially, no one was comfortable with the diagnosis, or the patient, or the implications of her care.
Everyone anticipated unmanageable problems and insurmountable barriers. Detailed explanations of the disorder, including what could be expected, and explicit discussions of the care plan helped tremendously in allaying staff (and physician) fears and anxieties. These discussions also helped staff understand that the patient's noncompliant behavior was related to a knowledge deficit of one or more of the alters, not because the patient desired to be difficult. 2. With the patient Explanations of procedures, tasks, and restrictions needed to be given repeatedly. Once or twice was not enough. it was necessary to repeat information until all the alters understood what was happening. This was especially difficult for the physicians who frequently had to be reminded that they might not be talking to the personality they talked to the day before. Nurses were always in the room when a physician came to see the patient in order to facilitate communication. The emotional state of the child alters seemed to be extremely important to the older, adult personalities. Because of this, the staff asked repeatedly about the condition of the children; whether they were comfortable with the information given and decisions that were made, and about their level of physical comfort. This concern for the younger members of the "family" apparently helped the dominant alters feel more comfortable with the staff. 3. With the health care advocate and primary psychiatrist: Daily communication with one or both of these individuals averted many behavioral problems. Laura, in particular, had excellent insight into potential reactions to specific stimuli, while the psychiatrist provided specifics for dealing with actual problems.
Staff also felt that consistency in her caregivers, and especially in her routine, was even more important for this patient than usual. Care was taken to maintain a regular routine from day to day even if her usual nurses were not available. This maintenance of normalcy helped to keep Gail calm, and facilitated communication.
Communication regarding routines and restrictions again became extremely important. Staff left written explanations of wound care. Notes regarding restrictions were prominently placed to remind all of the "family" of what they could not touch. This was very helpful in dealing with the younger alters. Eventually, most of the "family" became very comfortable with the wound and assisted with dressing changes and wound care.
Gail's postoperative management continued to challenge staff. Incisional wound management required detailed attention by the wound care specialist. While in the hospital Gail was started on hyper-alimentation and due to the high vitamin concentration her wound continued to heal well. The healing process was affected when Gail was diagnosed late in her hospitalization with Crohn's disease. She was started on high-dose steroid therapy and responded well.
Discharge planning proved to be a challenge. Because Gail lived alone, home health visits were arranged for wound care management and intravenous antibiotic therapy. The fact that the home health nurse needed to be fluent in American Sign Language was an added complication. Arrangements were made for a companion to be there throughout the day. Gail/Sheila/Marsha were receptive to and indicated an understanding of the discharge plan. Her health care advocate was included in the discharge planning.
Although stressful for staff, the experience of caring for this patient was a unique learning opportunity. It provided an excellent vehicle for multidisciplinary coordination of care. Although the current literature emphasizes that DID is diagnosed, treated, and studied with increasing frequency in our society (Kluft, 1987), it is still difficult to recognize and manage in a medical-surgical setting. Early recognition of the diagnosis and communication of nursing plans of care to all involved providers results in the most effective outcomes.
Plan of Care for DID Management
In addition to the normal postoperative management, unique needs to DID were identified.
Nursing Diagnosis Intervention
Safety * Prevention prevent harm to self visually accessible
* Check on patient q 30 min minimum
* Keep environment free of sharp objects
Mental status * Introduce self, re-introduce if patient does
not seem to remember who you are
* Approach patient calmly
* Explain all procedures (written or through
interpreter) and/or actions before beginning
* Allow sufficient time to assess which alter you
are talking to, understanding that explanations
may need to be repeated
* Allow patient to "ask" questions
* Allow patient to express fear, anger without
harm to self or others
* Request "time-out" when patient overwhelmed
* Have interpreted present at least 3 hours per day,
consistently during periods of high stress, and
whenever physician is in to see patient, or a
procedure is to be explained or done
Knowledge deficit * Determine current alter's ability to learn related to discharge -- determine age, emotional stability, interest, planning tailor to each alter, use interpreter, pictures,
written instruction, health care advocate
* Instruct patient and significant other regarding:
- disease process
- treatment plan
- daily dressing change by home health nurse
- medications ordered, dosage, times, side
effects (include written explanation)
- anticipated outcomes
- instructions per MD
* Assess home environment
- current support system
- patient/health care advocate identifies
* Provide appropriate education/resource literature
* Dietary needs
- increase green, leafy vegetables
* Social service consult as appropriate
* Home health visits
* Document all teaching, discharge plan in
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|Author:||Holden, Maria A.; Van Hassel, Diane J.; Holden, Mark S.|
|Date:||Feb 1, 1997|
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