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.

Nice write-up on Maudsley Method

A really basic summary at Health News Digest provides a quick, easy read explaining the Maudsley Method (in other words, it's a good handout for people involved in your child's life who need to know the what/why/how of your treatment approach). The story, titled "Milkshakes Are Medicine for Anorexic Teens in Family-Based Outpatient Therapy," looks at research going on at New York's Weill Cornell Medical Colleage comparing family-based treatment to traditional psychotherapy.

Two winning quotes:

"In Maudsley, food is medicine that restores the body and mind. When the body is starving, the mind also weakens, becoming more susceptible to anorexia's rigid, often obsessive logic. Supervised feeding helps to break this vicious cycle. With the anorexia in charge, the adolescent really cannot regain the weight on his or her own. Nutritional rehabilitation gives the brain the nutrition it needs to re-establish healthy eating habits," says Dr. Dara Bellace, a clinical psychologist at NewYork-Presbyterian Hospital/Westchester Division and an instructor of psychology in psychiatry at Weill Cornell Medical College.

"This approach does not blame parents, but rather calls on their ability to nurse their child back to health. It requires a strong commitment to be with them for every meal -- something that can mean rearranging schedules and taking a tag-team approach to sharing the responsibility," adds Dr. Bellace. "The adolescent must also dedicate themselves to the therapy, understanding that, until they regain the weight, their parents will be feeding them much as they did when they were younger, deciding what and how much they eat and making sure they finish."

Happy reading!

The last five pounds matter

Determining a healthy body weight for someone suffering from an eating disorder, especially if they are not yet done growing, seems as much art as it is science. (More information on how to determine ideal body weight can be found here) Yet the importance of setting a high-enough weight is rarely discussed, especially in an environment full of fears of childhood obesity.

It turns out that settling for a body weight even slightly below an individual's healthy set point can have long-term effects. A group of researchers at Schneider Children's Hospital examined the relationship between body weight, metabolism, and menstrual status in a group of normal weight adolescents with a history of AN, BN, and/or EDNOS. In a subset of these patients, resting energy expenditure was measured via indirect calorimetry.

The non-menstruating adolescents had an average of 98.5% ideal body weight, while adolescents with regular menses had 102.8% ideal body weight. Furthermore, the amenorrheic group had a significantly lower resting energy expenditure, indicating that their bodies were still operating as if their diets were restricted. In fact, this group also consumed a lower-fat diet than the menstruating group, which tacitly implies that these teens were still restricting their diets, even if their weight was within the "normal range."

In growing teens, even a short duration of amenorrhea can result in significant bone loss which can only be restored by full weight restoration and the resumption of menses.

Although the authors state that, "It is unclear whether participants with amenorrhea, despite achieving a BMI percentile of 47.6%, would require an additional, yet modest, amount of weight gain to resume menses," the dangers of not requesting that recovering ED patients gain a few more pounds seems to far outweigh any temporary discomfort of the adolescent.

"Perhaps metabolic recovery alone, where the focus would be to correct the caloric imbalance and increase dietary fat, would be sufficient. In addition, it would be helpful to determine the impact of a participant’s premorbid weight on influencing the chances for resumption of menses," the authors conclude.

(On a personal note, that ED specialists are trying to determine IBW without taking premorbid weight into account is quite disturbing, though not really all that surprising)

The weight differences between the two groups of adolescents was not that significant- approximately five pounds. Yet their nutritional statuses showed very different pictures. Although other factors certainly do play a role in the resumption of menses after an eating disorder, even slightly lower weights can make a huge difference both short- and long-term.