The Danger of Pathologizing Normal Emotions

(Dr. Stuart is a psychologist and professor emeritus in the University of Washington’s Department of Psychiatry. He has more than 50 years’ experience as a teacher and researcher, and for 25 years has focused on advance care planning. Dr. Thielke is a physician and professor in the University of Washington Department of Psychiatry and Behavioral Sciences. He received his medical degree from University of Washington School of Medicine and has been in practice for more than 20 years. Dr. Thielke specializes in geriatrics.)

How would you respond emotionally if you were diagnosed with advancing ALS, or untreatable coronary stenosis, or virulent stage 4 cancer, or any other dread disease? Would you want your emotional response to determine whether you could choose the scope of care you receive? Whether your emotional reaction is labeled “sad” or “depressed” can have major implications for whether your treatment preferences will be accepted, so it is important to understand the role of negative emotions in the evaluation of the capacity to make informed decisions about medical care.

The right of patients to choose the treatment they receive remains a core ethical tenet of modern medicine, and honoring patient preferences should not be contingent on judgments of how a patient feels. Depression has often been cited as a reason to override patient autonomy, on the assumption that depressed patients are not capable of choosing treatments in their best interest. We have often seen cases in which people who expressed sadness about the dying process were diagnosed with major depression and then largely excluded from making decisions about their care. We argue here that although it is critical to identify major depression and understand that it commonly arises as patients near death, it is equally important to understand that feeling sad or depressed does not imply flawed judgment and reasoning.

The Effect Of Diagnostic Labels On Decision Making

The capacity to make informed decisions is issue-and-time-specific. It is evaluated by assessing four abilities as described below.

Understanding: The ability to comprehend diagnostic and treatment-related information, including the ability to comprehend, attend, encode, store, and retrieve words and phrases.

Appreciation: The ability to determine the personal significance of treatment information including insight, benefits, and foresight about the potential benefits of a procedure.

Reasoning: The ability to compare alternatives in light of their consequences, including the ability to articulate reasons applicable to the patient’s life situation.

Expressing a choice: The ability to make and communicate a choice and hold that choice over time.

Capacity is not a mental status measure. Even patients with demonstrable severe mental illness can be capable of making health care decisions that are congruent with their goals, regardless of whether clinicians or family members consider these choices unwise. For example, people who have schizophrenia and are not a danger to others have a recognized right to refuse antipsychotic medication if they present a well-reasoned argument for doing so, such as the “wish to avoid its unwanted side effects of the drugs”. Psychiatric diagnosis does not preclude legal capacity. To disallow individuals’ advance directive because they are diagnosed as depressed or suffering from any other mental illness unjustifiably violates their legally guaranteed right of autonomy.

Special Concern Regarding Requests For Aid In Dying

Medical aid in dying presents a special case because it is only available when two independent, qualified providers certify that the patient has six months or less to live. Regardless of patients’ emotional states, upon due deliberation and discussion with their providers, people who have decision-making capacity can initiate the aid-in-dying process with a formal request. This must be followed by a second request two to 20 days later, dependent on the jurisdiction. If illness progresses rapidly, people may lose the capacity to make the mandatory informed second request, in which case the patient and family must make alternate plans for an acceptable death. Because the risk of losing capacity is somewhat unpredictable, it is wise to begin discussion of aid in dying early enough to be certain that both requests are made while one retains capacity. The prescription, drugs, or other necessities can be held until the patient is ready to proceed.

What Providers Can Do When Capacity Is In Doubt

It is best to approach seriously ill patients as if they were sad, giving them a chance to tell their stories while listening with compassion and understanding. Gentle suggestions for improving their reasoning can be offered if necessary. If patients show inflexible negative thinking that renders them incapable of prudent decision-making, they should be screened for depression and offered appropriate treatment. This can include help in decision-making skills based on the principles of DBT (dialectic behavior therapy) or CBT (cognitive behavior therapy). Severely depressed patients may need medication to be able to take advantage of this help. Capacity should be continuously evaluated with the goal of helping people think clearly enough to exercise the right to make informed decisions.

Conclusions

1. It should always be assumed that even extremely sad or depressed individuals have the capacity to make informed decisions unless there is a compelling reason to think otherwise.
2. Remember that capacity is independent of psychiatric diagnosis.
3. When in doubt, the four elements of capacity should be evaluated.
4. When capacity is inadequate, try to offer help to restore it as quickly as possible, and as often as necessary, to help patients retain control of their medical care.