Psychiatric Advance Directives: A Tool for Adult Sufferers

Several questions arose on the Around the Dinner Table forum about what to do when a child turns 18. In the US, 18 means a person is in charge of his or her own medical decisions, and parents have to ask permission to view medical records and are not implicitly part of the decision-making process when it comes from determining proper care for their child's eating disorder.

So what should parents do before their eating disordered child turns 18?

My answer to this question depends a little bit on their status in recovery. If your child is still acutely ill, getting them to approve a psychiatric advance directive may be difficult. The eating disorder will probably not like this idea very much. However, if they are thinking more rationally and are embracing recovery at least somewhat, this may be an opportunity to prepare one of these documents.

What is a psychiatric advance directive, anyway?

They're a lot like a living will, except for psychiatric care. The idea of the document comes from the understanding that mental illness frequently robs the sufferer of the ability to make the best decisions for their own care, especially when the illness becomes severe. Mental illness can also rob a person of the ability to even understand that they are ill, which can lead to court-ordered treatment. Although this treatment is certainly life-saving, it also prevents a sufferer and his/her family from having much say in the course of treatment.

A psychiatric advance directive is typically written during periods of recovery/remission, and spells out the kind of care the sufferer would like to receive if their illness ever renders them incapable of making these decisions in the future. Furthermore, the sufferer can specify an "agent" (such as a parent/guardian/caregiver) to make these decisions in their place.

The sufferer can provide instructions on hospitalization, alternatives to hospitalization, medications, treatment, etc. The document can specify who should be contacted if the individual does end up in a psychiatric unit, who should take temporary custody of any children, etc. The document must be signed by the sufferer, two witnesses and then notarized.

The Bazelon Center for Mental Health Law says that psychiatric advance directives have three main advantages:

• An advance directive empowers you to make your treatment preferences known.
• An advance directive will improve communication between you and your physician. It can prevent clashes with professionals over treatment and may prevent forced treatment.
• Having an advance directive may shorten your hospital stay.

Laws vary from state to state, and psychiatric advance directives have not been tested much at all in courts of law. However, it may be a useful tool in helping to protect an adult child in the event of a future relapse.

More information on psychiatric advance directives:

From The Bazelon Center for Mental Health Law
From The National Alliance on Mental Illness
From Duke University
FAQs on psychiatric advance directives
National Resource Center on Psychiatric Advance Directives
Templates for creating an advance directive

If you have any questions, I would consult with a family lawyer. They would be able to answer most questions you might have.

Family Based Treatment is Cost-Effective for Adolescent AN

There's no way around it: anorexia (and other eating disorders) are difficult, expensive illnesses to treat. The good news is that effective treatments are available. Recovery can be a long, winding road (as I and other families know), but new research is showing the most effective ways to treat anorexia.

James Lock and his group out of Stanford University published an article in the latest issue of Eating Disorders: The Journal of Treatment and Prevention, titled "Costs of Remission and Recovery Using Family Therapy for Adolescent Anorexia Nervosa: A Descriptive Report." He looked at the costs to treat adolescents with AN and their families with a standard Family-Based Treatment approach.

The majority of the costs (72%), Lock found, were due to medical hospitalization, before or during outpatient treatment. Another 20% were due to outpatient psychiatric treatment, a much smaller percentage than is traditionally given. Noted Lock: "This result may be due to the specific outpatient management strategy used in this study which employed parents as the main agents for change. In cases where this approach is effective, this results in decreasing both the intensity of treatment as well as the need for other types of treatment such as individual, group, nutritional counselling, or other forms of treatment that would add expense."

Due to differences in insurance, the final costs listed in the paper did not factor in health coverage, or any deductibles and co-pays. The costs listed, then are the market cost of treatment and NOT what most people with insurance coverage would pay. Costs, however, would still be extensive. The study also failed to factor in food costs (which can be significant) and extraneous costs such as time off work for parents. Obviously, this would vary greatly from family to family, but again, these costs are significant.

Lock found that costs to recovery can vary widely, ranging from USD$33,000 for "partial remission," defined as weight >85% IBW, to USD$84,000 for full recovery (weight >95% IBW and Eating Disorder Examination scores in the normal range). This treatment is more expensive than that of even schizophrenia. But, considering that the average residential treatment stay lasts for 90 days, costs approximately USD$84,000 (often not covered by insurance), and lacks the scientific research and integrity of evidence based methods.

The Stanford group concluded that when "compared to costs described for adults with AN, adolescent treatment costs appear to be lower when families are used effectively to aid in treatment."