State of Mind

A Remarkable Way for People With Mental Illness to Take Control of Their Care

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Photo illustration by Slate. Photo by Vadym Terelyuk/iStock/Getty Images Plus.

Welcome to State of Mind, a new section from Slate and Arizona State University dedicated to exploring mental health. Follow us on Twitter.

When people hear the term “advance directive,” they usually think about end-of-life situations—like a living will in which you give instructions for how you would like things to be managed if you were terminally ill. Most commonly this will take the form of advance refusals of particular treatments that might delay death without making life comfortable.

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Now, this idea of giving advance medical instructions for a future when you might not be able to make decisions for yourself is gaining prominence within a very different health context: helping people with severe mental illness manage their own care. In many ways, mental illness provides the perfect opportunity for advance decision-making.

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With terminal or degenerative illnesses such as dementia, a common concern is that people are thinking themselves into a future context, one where they have no experience and cannot necessarily anticipate what their wishes and preferences would be. By contrast, severe mental illnesses—such as bipolar, major depression, and psychosis—are often episodic and repetitive. Based on past experience, people know how things are likely to be when they are unwell. They also have periods of wellness and stability in between episodes of illness when they are able to reflect on this and make decisions about future treatment. Advance directives are all about maximizing the individual’s autonomy by allowing them to make decisions and exert control over how their treatment is managed when illness takes away their ability to do this. In the words of the eminent U.S. psychiatrist Allen Frances, “Advance directives are perhaps the only intervention in psychiatry that is without a downside.”

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Specifically, these documents can allow them to request the use or avoidance of treatments that have been helpful or harmful in the past. People with severe mental illness become experts through experience, gaining understanding and insight into their condition through reflecting on previous episodes of illness. Providing ways for them to harness this expertise through the creation of advance decision-making documents may well offer a powerful means to improve the experience and outcomes of mental healthcare.  Although mental health law in many countries does not yet have provision for these types of directives, the situation is changing.

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An advance directive could be a way to indicate that, for example, doctors should avoid a certain medication or only administer it in a certain way. One attendee at a conference reported to me about having written an advance directive explaining that, although a particular medication works well for them when severely unwell, doctors should avoid the usual dose—according to the patient, a lower dose works for them without making them feel unwell. (The medication in question was quetiapine, known as Seroquel in the U.S.) On one occasion, the medical workers ignored these directions, and the patient found themselves in the hospital, forced to take the higher dose. The result was that they experienced physical illness and a long admission before the medication was finally reduced and they could recover.

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It may even be possible that advance directives could be part of reducing the common phenomenon of racial discrimination within mental health care. Many Black patients have reported experiences in which behavior was misinterpreted as threatening, leading to excessive use of force and police involvement. Traumatic restraint has even led to death in a number of cases. An advance directive might be one way to explain behavioral patterns and avoid these types of dangerous mistakes.

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For others, there is almost the opposite scenario, where patients might not receive the correct treatment or hospitalization soon enough, or when they know their future unwell self will reject a treatment that they need. In this case, people might wish to use an advance directive to “bind” themselves to treatment at a future point when they know they will need treatment and containment, but will be unwilling for this to happen. As one study participant with bipolar said, “I know with the self-binding aspect, it would be very helpful for me. …” In particular, they know that olanzapine—an antipsychotic that is also used as a mood stabilizer for bipolar disorder, known as Zyprexa in the U.S.—can be helpful to them when they are unwell. “But I know that if I’ve gone beyond the sort of initial stages, I would refuse Olanzapine,” they said. A recently published study in the Lancet Psychiatry showed strong support for provision of “self-binding directives” among people with bipolar, with 82 percent of survey participants endorsing the idea. The majority explained their endorsement by agreeing that they experience a “determinate shift to distorted thinking and decision-making when unwell.”

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That distorted thinking and decision-making can include suicide, which is a major risk for those with severe mental illness. For example, as many as 15-20 percent of those diagnosed with bipolar die by suicide. A self-binding directive might offer a way to minimize these risks. Someone could use the document to explain the signs and symptoms of suicidaility within their illness, such as detachment, sleeplessness, substance abuse, delusions, and, for many suicidal people, a desire to die. Their advance directive could request that they receive treatment and protection from themselves if they start to display those signs. As one participant in the Lancet study said:

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[W]hen I am unwell, my thoughts, perceptions and desires drastically change. I can become suicidal and impulsive, making decisions or plans that I [would] later regret [if I had followed through with them]. I often come out of an episode feeling extraordinarily grateful that I didn’t take my own life, but when I become ill the same thoughts and plans return to me regardless and I am convinced they are my true desires. I don’t want anyone to listen to me when I am unwell, I explicitly would want them to take my advance plans as my true wishes and would be mortified if they were overruled.

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Of course, there are challenges for mental health advance decision-making. How do we know that someone is sufficiently unwell to require invoking the directive? How do we know that someone is sufficiently well-informed or even sufficiently well to create a directive in the first place? But there is strong support for the idea among people with mental health conditions, and an increasing number of countries around the world are starting to amend their laws to try to find ways to give people the option for this to happen. In 2014 the U.N. Committee on the Rights of Persons With Disabilities stated “all persons with disabilities have the right to engage in advance planning,” which has led countries including India and Australia to incorporate advance decision making into their mental health laws. The England and Wales Mental Health Act 1983 is also currently undergoing revision that will see the introduction of legal provision for “Advance Choice Documents.”

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Increasing legal provision for mental health advance directives is one way to initiate a culture shift in which advance directives become a much more recognized and valued element of health care. But even without specific legislation, a document giving advance instructions to clinicians could be useful. By increasing general awareness about advance decision-making, we can perhaps encourage people living with mental health conditions to consider discussing the possibility of creating a document with their medical team. Equally, psychiatrists and other mental health professionals might become more ready to encourage and help their patients create these documents, and to ensure that the documents are visible and available within their medical records. Some useful resources already available; in the U.S., you can consult the National Resource Center on Psychiatric Advance Directives, and in the U.K., Bipolar U.K. and this article from Wellcome Open Research. Even simple instructions could play a valuable role—because a person’s past experience of illness may be the best way to guide treatment during future episodes.

State of Mind is a partnership of Slate and Arizona State University that offers a practical look at our mental health system—and how to make it better.

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