CHANGES in emotional and behavioral control (including agitation, emotional outbursts, and catastrophic reactions) are common following severe traumatic brain injury (TBI). These problems are often associated with cognitive impairment and limited personal awareness of those cognitive deficits, which can exacerbate problems with judgment and decision making. These cognitive and behavioral changes can be disruptive and can cause challenges in engaging patients in rehabilitative treatment. Although traditional behavioral modification approaches, and to some extent pharmacologic intervention, are effective in reducing disruptive behaviors for some persons with TBI during rehabilitation,1–3 some with severe brain injury do not respond sufficiently to allow them to participate meaningfully in rehabilitation therapies. Efforts to engage these resistant patients in treatment by explaining the rationale for rehabilitation may be ineffective if the patient steadfastly maintains that there are no deficits to rehabilitate.
This article discusses a patient with severe TBI who did not respond to traditional interventions and describes the outcome of an intervention developed to promote his engagement in rehabilitation. The ethical issues that arose in developing such an intervention are discussed.
Identifying information has been changed to protect this patient's privacy.
R.J. is a right-handed man in his late 30s who sustained a TBI in a fall from a moving vehicle 4 years earlier. There was a prolonged loss of consciousness; he was comatose for over 1 month. Additional injuries included pneumothorax, rib fracture, and numerous spinal fractures. R.J. recovered from his orthopedic injuries, participated in a lengthy rehabilitation process, and was discharged home with severe cognitive and behavioral difficulties.
R.J. completed 12 years of formal education with no history of learning disabilities. Prior to his injury, he was a small-business owner and was independent in all activities of daily living. Following his accident, he received disability benefits. His driving privileges were revoked and he required 24-hour supervision for safety. R.J. generally abstained from using alcohol, tobacco products, or illicit drugs, but he sometimes drank when less closely supervised. Psychiatric history was reportedly unremarkable.
R.J. underwent outpatient neuropsychological evaluations approximately 12 and 15 months following the initial injury, both of which revealed significant cognitive impairments. At the time of the first evaluation, R.J. misstated his age by 10 years and the current year by 6 years. When asked, he initially denied he was married despite having come to the appointment with his wife. He could not follow a simple 2-step command. Naming was sporadic and R.J. had difficulty on tasks of basic spelling and reading. He was noted to have difficulty perceiving visual stimuli and was thought to have a possible visual object agnosia. Basic verbal memory was impaired (eg, recalling 0/3 words following a brief distraction). Information processing was slow and he was observed to make numerous perseverative errors on one measure. The examiner was struck not only by R.J.'s general restriction in verbal reasoning but also by his inability to access presumably well-learned facts (eg, reporting 39 months in a year).
At the time of the second evaluation, R.J. remained severely cognitively impaired and was noted to be more emotionally labile, becoming emotionally explosive when faced with tasks he could not do. For example, when R.J. began to have difficulty answering orientation questions, he started to yell and swear, stating he did not want to continue with the testing. He was able to be calmed and agreed to continue with the evaluation. However, R.J. repeatedly became frustrated when he faced difficulty, eventually becoming so angry that he refused to finish the evaluation. He was obviously aware of his failures and was unable to tolerate them. Intensive rehabilitation and evaluation for potential medical management of his emotional outbursts were recommended at that time.
R.J. was enrolled in an adult TBI day treatment program but was expelled because of violent and threatening behavior including assaulting a staff member. His wife had been his primary caregiver, but she feared for the safety of their young children because of his outbursts at home. At times, R.J.'s wife had their children stay with a relative because of her concerns about R.J.'s behavior and the children's safety.
Approximately 3 years after his TBI, R.J.'s wife began to notice an increase in his level of agitation and difficulty walking. A medical workup was conducted and neuroimaging studies were read as showing persistent changes consistent with encephalomalacia in the right frontal region, cerebral atrophy, and venticulomegaly. R.J. was hospitalized and underwent right ventriculoperitoneal shunt placement. He was then transferred to the inpatient neurorehabilitation unit for treatment of his gait disturbance and disruptive behavior.
While on the neurorehabilitation unit, R.J. used multiple profanities and was verbally aggressive. Because of his limited insight into his impairments, he often refused therapies. R.J. would become particularly agitated if his therapists told him they were going to work on his balance or walking, a primary goal for his rehabilitation stay. While R.J. had a significantly unsteady gait, he did not appreciate that fact and appeared to perceive the need to address walking in therapy as insulting and belittling. His limited insight placed R.J. in potentially harmful situations (eg, attempting to walk without assistance while holding a full lunch tray). Attempts to explain safety precautions or the benefits of his therapies in general were typically met with explosive catastrophic reactions. He threatened to hit staff members and attempted to elope from the unit on multiple occasions. He required a 24-hour sitter. The neuropsychology service was consulted to develop a behavior modification plan that would minimize R.J.'s catastrophic reactions to the rehabilitation program and increase his participation in daily therapies.
At the initial meeting, R.J. was oriented to his date of birth and the name of the city but was unable to provide his correct age, name of the hospital, reason for admission, or the date. He became upset when he had difficulty answering orientation questions. While he could not state the reason for his hospitalization, he did comment that he had a brain injury from an accident and that his memory was “not so good.” His insight regarding other cognitive deficits was quite limited and he was reactive to any feedback regarding cognitive changes that had occurred since his TBI. His wife commented that she had noticed mild word finding difficulties since his preshunt decline. When asked what he wanted to get out of the rehabilitation process, R.J. stated that he wanted to get healthy and find a job.
R.J. was quite emotionally labile and reactive to perceived failures, ranging from irritability/anger to self-deprecating comments with frequent use of profanity. Thought content was confused and behavior was childlike (eg, stating that he would never eat or speak again because he was upset). At one point during the interview, R.J. stood up, stated that he was leaving the unit, and began to gather his belongings. However, he was easily distracted and redirected. R.J. was noted to become most agitated when faced with questions/tasks he found difficult. When redirected to some of his strengths (eg, loving father, beautiful children), his agitation quickly subsided. He stated several times that he would like to get a job to contribute to his children's college fund.
R.J. was known to the medical director of the rehabilitation unit, because she was involved with his care as an outpatient. Given her prior knowledge about his background, desire to work, and behavior issues, it was her suggestion to develop a program to “hire” the patient to “work” on the rehabilitation unit. Following additional discussions with R.J.'s physician, his wife, and inpatient rehabilitation therapists, the neuropsychology staff developed a behavior modification plan to improve participation and reduce verbally aggressive behavior. R.J.'s desire to work and contribute to the family finances was the basis for the program, using the principles of operant conditioning (ie, token economy).
The following plan was developed. R.J. was temporarily paid a “salary” for his participation in the neurorehabilitation program as part of a “job training” program. Unbeknownst to R.J., his “salary” was actually provided by his wife. As part of this program, his daily responsibilities were outlined, including participation in therapies, following instructions, being well-groomed, helping out with unit tasks, filling out forms (eg, his menu), using professional language (eg, no swearing), and following a schedule (eg, taking medications at prescribed times). R.J. was informed that, if he completed the tasks mentioned earlier, he could earn up to $30 per day. If he chose, which he did not, a small advance of his pay could be made to allow him limited spending money on the unit. Otherwise, he would be paid at the end of his stay. He stated that he wanted his pay to be deposited into an “interest-accruing savings account,” and that all he needed to have was a receipt showing the money had been deposited. With the assistance of R.J.'s wife, we arranged for his “salary” to be given to him via bank receipt. He was excited about beginning the program and agreeable to this plan.
The behavior plan was reviewed with R.J.'s therapists and nursing staff. A checklist of his daily responsibilities titled “job evaluation form” was posted in his room. Sample copies of the form were provided to his therapists and the nursing staff.
On a daily basis, therapists and nursing staff would fill out R.J.'s “job evaluation form.” R.J. received a check mark in the appropriate box if the staff member felt R.J. had met his goals for that therapy session or nursing task. Therapists filled out the sections for their therapy sessions. Nursing staff determined if R.J.'s behavior outside of therapy met criteria for his other daily responsibilities (eg, taking his medication, not swearing). The staff explained to R.J. in basic terms why he did or did not receive a check mark for that day's activity. Staff members were encouraged to use frequent redirection and distraction in response to verbal outbursts as needed. If R.J. was observed to act disruptively, the staff gently reminded him about behavior in the workplace and that he was trying to earn as many check marks for the day as possible. R.J. was praised when he demonstrated professional (cooperative and courteous) behavior. Continued use of a sitter was recommended in managing R.J.'s behavior outside of his therapy sessions. The following day, R.J. and his speech therapist would add up the number of check marks and determine R.J.'s earned salary for the previous day. For every 2 check marks R.J. received, he was paid $5.00.
R.J. was maintained on valproic acid (Depakote) and trazodone by his physiatrist during his stay to assist with behavior management and sleep disturbance.
The program was conducted over a 6-day period, during which time R. J. could potentially earn up to $30.00 per day. Of a possible total of $165.00 (some days did not have 3 hours of therapy), R.J. earned $142.50 (86% of his potential salary). His participation in therapies significantly improved and disruptive behaviors decreased. He became more helpful around the unit, even asking to do tasks he was not required to do (eg, clearing trays, stapling information packets). He expressed a sense of pride in task completion, his frequency of self-deprecating comments diminished, and his affect brightened. He had the greatest difficulty consistently earning check marks for use of courteous/professional language (ie, abstaining from swearing). On the day he was discharged, R.J. received a bank deposit slip indicating that an amount equal to his earned salary was deposited into a savings account for their children (his wife had transferred the money from another account).
Following discharge, R.J. was accepted into a day treatment program for adults with brain injury. The job training program was transitioned to that setting as well. During follow-up with R.J.'s wife, approximately 6 months following discharge, she reported that R.J. continued to do well with the behavior program and that he took great pride in saying that he “works” at the day treatment center.
This case highlights an intervention in which a decision was made to frame the rehabilitation experience for a patient with severe TBI in a way that was misleading because of his extreme reactivity and unresponsiveness to truthful explanations about the purpose of rehabilitation and his role in the program. This decision to deceive raises a number of ethical questions.
In reviewing biomedical ethics in general and in particular the American Psychological Association's (APA) ethics code,4 several principles appear particularly relevant to this case. Beauchamp and Childress5 discuss the concept of veracity as it applies to trust in the patient-provider relationship. Similarly, principle B (fidelity and responsibility) from the APA ethics code emphasizes the need to establish trust with patients. Deception would potentially conflict with this principle. However, there is no prohibition in the APA ethics code against deception for valid clinical reasons (eg, paradoxical therapy, placebo interventions). As such, deception may be considered ethical under particular circumstances. Furthermore, discussions of biomedical ethics have allowed for the idea of “benevolent deception,” which may be justified in rare circumstances.5–7 While not specific to clinical interventions, standard 8.07 of the APA ethics code (deception in research) addresses circumstances under which deception may be acceptable within research projects. This standard notes that deceptive techniques can be justified at times by the study's applied value, if “effective nondeceptive alternative procedures are not feasible.”4(p11) With respect to this gentleman, deception was thought to be a last resort, given his clear need for rehabilitation (unsteady gait, fall risk, and cognitive deficits), the degree of behavioral aggression, and the failure to respond to all previous rehabilitation efforts.
The APA ethics code, principle C (integrity), clearly not only addresses deception as potentially “ethically justifiable to maximize benefits and minimize harm”4(p3) but also maintains the psychologist's obligation to consider whether it is necessary. It also underscores the psychologist's responsibility to anticipate possible adverse consequences of deceptive interventions and correct any harmful effects that result from use of those interventions. Along the same lines, the ethical principles of beneficence and nonmaleficence speak to providers' commitment to benefiting patients with whom they work and preventing harm, with attempts to resolve conflicts among their obligations in a manner that minimizes harm.4,5
The approach taken with this patient was initiated in a sincere attempt to help R.J., because it was thought that the intervention, if successful, would ultimately help to minimize harm by reducing risk of injury to himself and others. Nevertheless, potential risks of the intervention were identified including the possibility that R.J. could discover the deception and feel betrayed. Certainly, if he discovered the deception, it could affect his willingness to participate in further treatment and trust future providers. Kanann8 wrote eloquently about the significant damage that may occur when there is a betrayal of trust in the patient-provider relationship. In addition, R.J. could have experienced a decline in his mood if he realized that, in fact, he had not met his goal of working to provide for his family. R.J.'s memory deficits and limited insight contributed in part to the success of this intervention without his awareness of the deception. Under other circumstances, the risk of the patient discovering the deception could be greater. Even so, efforts to anticipate and minimize risk associated with the intervention were taken by maintaining careful coordination of the plan with R.J.'s wife and rehabilitation team. The plan was discussed in detail with the entire treatment team to ensure that everyone was aware of the intervention and the importance of reframing the rehabilitation experience for R.J.
In considering whether the use of deception is ethically justifiable, one must weigh the benefits of the intervention against the risks. The benefits to both R.J. and his family were felt to include the following: improved self-esteem, adherence to therapies that would assist the patient with his balance and reduce risk of falls, a reduction in caregiver burden, increased ability to participate in and benefit from subsequent rehabilitation programs on an outpatient basis, and potential for improved safety within the home. In light of R.J.'s inability to perform basic necessary functions, tendency toward risk-taking behavior and prior failure of more traditional rehabilitation strategies, it was thought that the potential benefits outweighed the risks for this patient.
In addition to determining whether the intervention was justifiable, another consideration is whether R.J. should have been informed of the deception upon completion of his rehabilitation stay. It is noted that standard 8.07 of the APA ethics code (deception in research) includes an expectation that psychologists debrief participants as early as possible, ideally at the end of their participation in the study, about any deception that was a key part of the study. However, standard 8.08 (debriefing) draws attention to the possibility that “humane values” could “justify delaying or withholding this information”, in which case psychologists “take reasonable measures to reduce the risk of harm.”4(p12) In this case, we did not inform R.J. of the deceptive nature of the intervention due to the concerns about associated risks (betrayal of trust, self-esteem, etc) noted earlier. In addition, it was hoped that R.J.'s program could continue on an outpatient basis, which necessitated continued deception.
The biomedical ethics literature highlights issues pertinent to autonomy and justice.5 Similarly, principle E of the APA ethics code (Respect for People's Rights and Dignity) emphasizes the need for special protections for the rights and welfare of vulnerable persons, as well as the rights of all people to self-determination.4 R.J. was clearly vulnerable given the severe degree of his cognitive restriction and limited awareness, which impaired his ability to make independent decisions. Although deception would appear to jeopardize autonomy, one could argue that the intervention was ultimately aimed at giving the patient more autonomy by increasing his ability to function. In this instance, the intervention was successful, leading to R.J. feeling more empowered rather than less.
R.J.'s rights were also protected by following ethical standards pertaining to consent. As the patient was legally unable to give informed consent, given his cognitive status, formal permission was obtained from his wife who was his legal guardian. R.J. provided assent to be paid for completing these specific “job-related” tasks, but he was not aware of the true nature of the rehabilitation program. R.J.'s goals and best interests were paramount in devising the intervention, as outlined by standard 3.10 of the APA ethics code4 regarding duty toward persons incapable of providing legal consent.
The use of deception has been discussed elsewhere as it pertains to other persons with cognitive impairment, including those with Alzheimer disease,9,10 psychosis,11 autism,12 and mental retardation.13 For example, Sandford et al12 present the case of a patient with autism who had severe behavioral dysregulation, who needed to be moved from one inpatient setting, which was inadequate to meet her needs and where she had poor quality of life, to another unit specifically designed for treatment of autism. Given her extreme anxiety and agitation in response to anticipated changes in her environment, a decision was made to not inform her of the transfer; rather, she was told she was “going on a trip.” The patient ultimately transitioned well into the new unit after spending time there with familiar staff and seeing her belongings in her new room, with reduced aggressive behaviors and improved self-care. Cutcliffe and Milton9 describe a woman with severe cognitive impairment who perseverated on needing to leave her residential unit to make dinner for her husband who had been deceased for many years. On being told that her husband had passed away, she became very distressed but forgot this information within an hour and would again perseverate on leaving the unit. Staff ultimately chose to respond to the patient's requests to leave with a “white lie” that he had made arrangements for dinner and she would not need to prepare it for him. The patient responded well to this explanation, though false, and her agitation and attempts to leave diminished.
As our case and the earlier examples highlight, there are times when devising an intervention for a patient with severe cognitive limitations necessitates finding a balance among autonomy, beneficence, and nonmaleficence. When the patient's cognitive impairment already compromises autonomy, such that the person is not capable of making competent decisions, it may not be feasible to adhere to all 3 principles.9 In those cases, efforts to maximize benefit to the patient and minimize harm may need to take priority. The importance of the practitioner's judgment in determining whether deception is acceptable in a given circumstance is crucial; given the potential risks, the consensus in the literature is that it should only be used in rare instances.
SUMMARY AND CONCLUSIONS
Ultimately, our intervention was successful in helping a patient with severe TBI and associated cognitive and behavioral difficulties engage in his daily rehabilitation tasks and complete a rehabilitation program. The program helped reduce his agitation and improve self-efficacy. However, it came at the expense of deceiving the patient. It is our contention that when approached carefully and used judiciously, deception may be part of an effective intervention strategy but only when all other approaches have failed.
© 2013 Lippincott Williams & Wilkins, Inc.