Informed Consent in Patients with Behavioral and Neurologic Disorders
Every physician-patient interaction involves some assessment to determine whether patients have adequate capacity to make an informed decision about their own care. Assessing decision-making capacity in patients with mental health disease or specific neurologic conditions can present challenges to the clinician caring for these patients. A patient’s cognition is the main determinant affecting this capacity; patients with impairment from any underlying cause, including behavioral and neurodegenerative disorders, are therefore at risk of impaired cognitive ability. At highest risk of such impairment are patients affected by Alzheimer disease, Parkinson disease, schizophrenia, depression, substance abuse, and traumatic brain injury.
When cognitive impairment is suspected, the clinician should consider initiating a formal assessment of capacity by a trained professional. This assessment consists of open-ended questions that relate to the medical decision being investigated. The questions are designed to formally evaluate the 4 decision-making attributes: understanding, appreciation, reasoning, and expression of a choice. Several assessment tools are available to help in testing for decision-making capacity, such as the MacArthur Competence Assessment Tool for Treatment (MacCAT-T), the Assessment of Capacity for Everyday Decision-Making (ACED), and the Capacity to Consent to Treatment Instrument (CCTI). It is imperative for clinicians to understand the potential challenges; if patients refuse to be tested, it may be an issue of trust, particularly if the patients feel that their abilities to understand are being questioned. It may be effective to assist such patients in their understanding that this assessment is required, and that all information obtained during this assessment will result in the best medical care.
When it is determined that a patient has significant impairment and lacks the capacity to make an informed decision, there is an ethical obligation to find an individual who is capable of making decisions for that patient. It is helpful when patient preferences are established prior to the patient’s incapacity. Without this, local laws can determine who may serve as the patient’s proxy; generally, the order prioritizes the spouse first, followed by any adult children, then parents, siblings, or other relatives. If the treatment dilemma is urgent and no surrogate is found, formal guardianship can be assigned by a judge based upon a legal determination of incompetence.
Excerpted from BCSC 2020-2021 series: Section 1 - Update on General Medicine. For more information and to purchase the entire series, please visit https://www.aao.org/bcsc.