Ethical Considerations in Neuropsychiatric Disorders

Although neurology and psychiatry remain distinct and separate disciplines in terms of required training, scope of practice, and departmental demarcations, the psychiatric subspecialty of neuropsychiatry is emerging as the standard-bearer of modern psychiatry’s quest to incorporate the many advances in basic, translational, and clinical neurosciences (1–4). Defining the role and boundaries of neuropsychiatry has been a fundamental yet challenging task for the field over the past two decades (5). Although different organizations define the discipline with slightly different terminology, one useful definition, by the International Neuropsychiatric Association, emphasizes the field’s focus on “the complex relationship between human behavior and brain function, and endeavors to understand abnormal behavior and behavioral disorders on the basis of an interaction of neurobiological and psychological-social factors” (6, p. 354). Framed somewhat differently, both neuropsychiatry and behavioral neurology (a subspecialty of neurology) share the mission of understanding “the clinical and pathological aspects of neural processes associated with cognition, emotion, behavior, and elementary neurological functioning” (7, p. 6).

In clinical practice, neuropsychiatrists are concerned primarily with the assessment and management of psychiatric symptoms and syndromes associated with neurological disorders (3). Common examples include neuropsychiatric aspects of seizure disorders, cerebral vascular disease, traumatic brain injuries, and central nervous system degenerative diseases (3). Neuropsychiatric evaluation may also be informative for many other psychiatric symptoms and syndromes, including psychotic disorders, obsessive-compulsive syndromes, and unexplained neurological symptoms. Moreover, as others have argued (5), neuropsychiatrists must remain flexible as the field evolves. They must be able to utilize their knowledge of general psychiatry, neuropsychology, neuroanatomy, and neurophysiology—while integrating emerging research findings in the neurosciences—in order to effectively address the broad range of disorders that may come to their attention.

In addition to the knowledge base and clinical skills necessary for the optimal evaluation and management of neuropsychiatric conditions, neuropsychiatrists should be prepared to tackle difficult ethical issues. These complex disorders bring with them classic ethical tensions—for example, protecting, as far as possible, the autonomous decision making of a patient with brain injury while evaluating whether the patient may be vulnerable because of diminished cognitive abilities secondary to the disorder. Psychosocially complex circumstances can arise—for example, the possibility of caregiver neglect in tandem with patient dependence resulting from physical or cognitive impairment or the challenges of working respectfully with a patient who has a functional neurologic condition. Furthermore, developments in prevention, prediction, diagnostics, and treatment (e.g., biomarkers, genetics, neuromodulation, and cognitive rehabilitation, to name just a few) will bring forward novel ethical dilemmas. These dilemmas will need to be met with a deep appreciation and attunement to the fundamental ethical principles guiding psychiatric care.

The cases described below illustrate several of the common ethical dilemmas that may arise in evaluating and treating patients with neuropsychiatric disorders:

Case Illustration 1

Janet, a 57-year-old married woman with multiple sclerosis, has recently started using a wheelchair and requires significant assistance to ambulate. She has been referred by a colleague who is a neurologist for a psychiatric evaluation for the assessment and treatment of depression. During the initial neuropsychiatric assessment, Janet reports significant guilt about burdening her husband, who has been her sole caretaker for many years. She reports that recently he has become impatient when she is slow in ambulating. On further questioning, she denies any neglect or emotional or physical abuse. The neuropsychiatrist explains to Janet that patients have a right to compassionate care and provides basic education about caregiver burnout. She also meets with the patient’s husband in a family meeting and provides information about caregiver burnout. Janet agrees to be connected to social work services to look into additional resources for in-home care and to start an antidepressant medication.

Janet follows the neuropsychiatrist’s recommendation, and her depression remits with medication management and attendance at a peer support group. Hiring a caregiver relieves the patient’s husband from full-time caregiving. Despite the progression of the multiple sclerosis, Janet’s depression does not relapse, and her relationship with her husband improves. After two years of remission of depressive symptoms, Janet suddenly develops panic attacks. After careful examination, no medical or neurologic etiologies can be found for the panic attacks.

After being screened for abuse or neglect, Janet starts crying and discloses that her new, paid caregiver does not attend to her needs in a timely manner. As an example, the caregiver does not take Janet to the restroom frequently enough, despite her requests. Janet reports that she has been holding her urine for hours at nighttime, which has resulted in a recent urinary tract infection. However, Janet is afraid of losing this caregiver and putting her husband back into the difficult situation of having to provide full-time care for her. The neuropsychiatrist validates Janet’s fears but also affirms her right to compassionate and attentive care. With the patient’s consent, Janet’s husband is invited to join the session, and they both agree with the plan to find a new caregiver. They are also informed of the neuropsychiatrist’s obligation to report this case to the appropriate agencies according to state regulations.

Case Illustration 2

A 50-year-old woman presents with cognitive deficits, depression, and choreiform movements. The presenting neuropsychiatric signs and symptoms, in addition to the significant family history of illness with similar presentations, raise the suspicion for Huntington’s disease. However, the neuropsychiatrist defers ordering the Huntington’s disease genetic test until after the patient can receive genetic counseling and social work consultation and only after the patient provides informed consent for the genetic testing.

The patient decides to proceed with genetic testing, which confirms the diagnosis of Huntington’s disease. Within 10 years, the patient’s disease progresses significantly, with multiple recent hospitalizations for aspirations and pneumonias. In the most recent hospital visit, the patient requests that a “Do Not Resuscitate” (DNR) order be added to her hospital chart. After providing detailed information about the nature and implications of a DNR order, assessing the patient’s capacity to make this specific decision, and exploring the patient’s reasoning behind this request, the neuropsychiatrist grants the patient’s request.

Case Illustration 3

Mark is a 32-year-old man with a history of migraines and seizures who is admitted to the epilepsy monitoring unit to assist with the diagnosis of his seizures. He is currently taking divalproex sodium, which affects his ability to focus at work and has been associated with a near 50-pound weight gain. Within the first 48 hours of admission, three typical events were captured and found to have no pathological epileptiform correlate on EEG. The clinical characteristics of the captured events under video EEG were most consistent with psychogenic nonepileptic seizures.

The attending neurologist reviewed the findings with the patient. He reassured the patient that there was no evidence of epileptic seizure activity. He validated his experience of symptoms as “real,” not faked, and attributed them to functional neurologic symptom disorder (FND), or conversion disorder. In collaboration with the neuropsychiatry service, the patient was engaged in discussion of risk factors, mechanisms, treatment, and prognosis. Although the patient could not readily identify risk factors initially, with an empowering and supportive approach he was able to recall a period of repeated sexual abuse by a close family member in his preadolescent years.

Recommendations from the treatment team included weekly psychotherapy sessions and antidepressant medication for comorbid depression. The neurologist provided education on the lack of efficacy of anticonvulsants such as divalproex sodium, and a medication taper schedule was initiated. The patient’s family was provided with psychoeducation, specific guidelines for responding to events at home, and instructions regarding the appropriate use of emergency services.

Upon the six-month follow up, the patient reported significantly less frequent nonepileptic seizures. He followed the treatment plan of psychotherapy and had tapered off divalproex sodium, with a subsequent return to his baseline weight. He reported more productivity at work and a better relationship with his wife.

Case Illustration 4

Katie, a 21-year-old undergraduate student, is referred for a neuropsychiatry assessment after a motor vehicle accident in which she was rear-ended about one month ago. She suffered whiplash and states that since that time she has had severe headaches and intermittent vertigo, which interfere with her ability to focus in class.

On the day of the accident, Katie visited her primary care physician, who ordered a brain MRI. She was informed that the MRI showed no signs of hemorrhage or other structural abnormality. Her Mini-Mental Status Examination score was 29 of 30, and her neurological exam was normal. Ibuprofen was recommended for headaches. Two weeks after the car accident, she requested a letter for the school’s educational accommodations office to permit a reduced course load because of the persistent headaches, vertigo, and difficulty with concentration. Her primary care physician agreed to write the letter. However, the request for accommodations was denied on the grounds that there was no objective evidence substantiating her symptoms.

On presentation to the neuropsychiatrist, Katie notes increased anxiety because of the difficulty she is having in keeping up with her assignments. She is experiencing continued cognitive issues and inconsistent sleep because of the persistent headaches. She expresses frustration that her tests “did not show anything” and that the accommodations office “does not believe her.” She feels at risk for failing two of her classes with midterms approaching.

The neuropsychiatrist discusses a working diagnosis of postconcussion syndrome and reviews common symptoms. He educates her on the potential mechanism of microstructural brain injury, which is unable to be detected on a standard MRI. They discuss the course of recovery and prognosis. He orders neuropsychological testing and prescribes amitriptyline for treatment of headaches, insomnia, and anxiety. He offers to collaborate with her primary care physician to appeal the decision of the accommodations office. He writes additional documentation in support of a “new normal” level of functioning.

Six weeks after the accident, Katie brings a form to the neuropsychiatrist from the school athletics department that requests permission to resume playing on the soccer team at full capacity. Although her condition has improved, she continues to report intermittent headaches and ongoing trouble with focus. To the student’s disappointment, the neuropsychiatrist discusses and documents his recommendations for continued abstinence from full-contact sports until further resolution.

Answers

Both overestimation of risk and dismissing the evidence could have undesired consequences. Therefore, each case needs to be considered carefully while assessing the risk and benefits of respecting the confidentiality versus the obligation to report when the patient’s safety is in question. This assessment needs to be collaborative and transparent to ensure privacy, autonomy, and veracity. In this case illustration, there is not enough evidence to raise a high suspicion for abuse or neglect; however, the caregiver’s burnout is evident and needs appropriate intervention.