By Rebecca Brendel | Cosmologics | July 29, 2015

Very early in my training, a middle-aged mother of two school-age children was referred to me for psychiatric care. In the past, she had struggled with periods of depressed mood, but she had never sought treatment. She came to me after, as she described it, her husband had “dropped her off” at the hospital and she was sent to me.

“Why would your husband do such a thing?” I asked her, trying to understand more about what had happened.

“I don’t know,” she replied.

“Perhaps we can figure it out together?” I suggested, feebly trying to establish rapport.

“The only thing you can do is tell them all that there is nothing wrong with me. I don’t need medication. I don’t need you. I just want to go home to my kids and never come back here again.” 

As it turns out, my patient had become seriously ill over the course of the week preceding her arrival at the hospital. In reviewing her chart, I came to learn that she had become “different.” A homemaker who took pride in managing the household and caring for her children suddenly couldn’t seem to complete any tasks of the daily routine that had become commonplace over the course of a decade. She feared that people were trying to kill her and her family, drawing all the shades in the home and ultimately fashioning a “safe room” using furniture to barricade the living room. Family and friends tried to reason with her, but she became withdrawn. When she did speak, she didn’t make any sense.

Those who loved her were terrified. They initially made arrangements to help her at home and with the kids. But what was happening? Would she ever be herself again? Or was she “gone” forever? How could they help her find her way back to who she “was” and to the things that had mattered immeasurably to her? Her husband, desperate to help his wife and to restore life as he and his family had known it, brought her to the hospital for an evaluation. She didn’t want treatment, but ultimately accepted medication she didn’t believe she needed: she knew she had to take it if she wanted to be discharged. It wasn’t a choice, the way she saw it. Take the medication or never go home. After several weeks of intensive treatment, she was referred to me.

***Over the years, I have evaluated scores if not hundreds of individuals who pose similar dilemmas. By virtue of an illness that, by definition, affects one’s capacity for logic, reason, reality testing, and perception of self vis-à-vis the world, the person who becomes a psychiatric patient often challenges care providers and loved ones with profound questions about what ought to done. Specifically, for the patient I described, what are we to do in service of respecting the person? Are we to persuade, require, and even demand that she take medication so that she can return to life as she had known and built it? Or do we follow her wish to be free from medication and decline treatment, even if it leads to partial or total departure from what used to matter to her? How do we consider the combination of biology and life circumstances that led to her current state, and how does that affect our responses to her decisions? Does it matter what she would say if her symptoms were to remit and she were able to reflect on her situation?

As a physician, I know that my ultimate responsibility is to the patient and that no ethically or clinically sound treatment can proceed without a central and fundamental acknowledgement of the patient’s autonomy. But what version of autonomy do I apply? Is autonomy reflected in the decisions and actions of the so-called rational mind, or does it also include a broader concept of the right to govern one’s self, even if this self resembles something we might label irrational? In practice, it’s a little bit (or perhaps a lot) of both, with contributions from both medicine and law.

From the standpoint of medical practice, the principle of autonomy means that a patient with sufficiently intact rational faculties has the right to make her own decisions. The forensic psychiatrist Paul Appelbaum, with others, has described the requirements for decisional capacity in a four-part, all-or-nothing inquiry. In short, the patient possesses the ability to make medical decisions if she is able to state a preference, understand the relevant facts, demonstrate an appreciation of the relevance of the facts to her particular situation, and rationally manipulate information in coming to a decision. If the patient does not meet all the criteria, she lacks decisional capacity. In this model, the consequences of a lack of decisional capacity still grant a primacy to the once-rational self by calling for another individual—or surrogate decision-maker—to make decisions for the patient based on what the patient would have wanted if competent, also known as the substituted judgment standard. When the patient’s wishes are unknown and cannot be ascertained, the surrogate decision-maker is charged with making decisions in the patient’s best interest.

The law approaches autonomy in mental health treatment from a different perspective. Under this approach, individuals have broad negative rights—i.e., the right to be free from intrusion by the state and others—whether rational or irrational. There are, however, limitations on that right derived from the state’s police power and legal responsibility to protect those who are unable to protect themselves (parens patriae). Since the 1970s, federal and state law has evolved to require dangerousness (generally homicidality, or risk of harm to others, and suicidality) as a pre-requisite for involuntary hospitalization; some states also add risk of harm to self due to the inability to protect or care for one’s self as a justification. Family members and others may seek interventions through the legal system for obviously mentally ill individuals who are making choices contrary to what they would have done prior to the onset of symptoms. Symptoms justifying such interventions may include alienation from family, apparent wasting of resources, risk of loss of employment, and risk to health. Under the predominant legal approach, these situations can be extremely complex and distressing, as there is no legal mechanism to secure the evaluation and treatment of an adult who is mentally ill but in no acute danger of harm to self or others without her consent.

Both approaches have merits in their recognition of the individual. But neither is completely adequate to address entirely the difficulties of mental health care delivery. As a psychiatrist, I must treat symptoms of active mental illness and alleviate the suffering it causes. But psychiatric treatment cannot stop at relieving symptoms. It is critical that psychiatry recognize and engage a patient’s capacity for emotional growth, adaptation, and change over time. Then, respecting autonomy can become more than a choice between what the previous, rational self would have wanted and a negative right to non-interference. Respect for persons, in line with this view, holds open the possibility of the integration of biological, emotional, and experiential factors into a broad and nuanced sense of self that not only survives but evolves with life’s unexpected bumps and potholes along the way.

My fundamental task, then, is to meet the patient where she is while also allowing that she might come to see her circumstances in a different way, one woven into the continuity of her experience, psyche, and life. Autonomy reaches its full potential of fundamental respect for personhood in its many dimensions and meanings by creating space for growth.

***So, what about my patient? Years after I left the clinic and she had transferred to a new provider, I saw her, unexpectedly, as I was walking to a meeting. She saw me, called my name, and walked toward me. She said that she had thought about me from time to time and had wanted to tell me how she was doing. Her kids were in college. Her marriage had ended. She was attending to herself for the first time in years and had gone back to work. She was happy and doing well, maybe better than ever, though her life was different than she would have expected.

When I first met her, I could not have predicted where she would be years later. From time to time, I think about the space she and I (with the assistance of my wise and now late supervisor) created that allowed for both the treatment of her symptoms and her emotional capacity for growth and change. But we also spent seemingly countless sessions in which I did all I could to convince her to take medication and to come to each successive session. If she hadn’t agreed, should or would I have sought legal intervention to force her to do so? Would this have been justified, knowing what I knew then? What about knowing what I know now? Even an integrated approach sensitive to the multiple dimensions of individual autonomy cannot provide a definitive answer.

This piece was originally published by Cosmologics Magazine.

Rebecca Brendel is the Director of the Master’s program in Bioethics at the Harvard Medical School Center for Bioethics.