Advance Directives Help Clarify Treatment When You Can’t : Useful Tools During A Crisis

From My Files Friday:  Psychiatric advance directives are more common today than they were when my son suffered his first breakdown in 2002 or when I first posted this blog in early 2010. If you aren’t familiar with a PAD — you should be because it can be an important tool for a person who has a mental disorder and those who love him/her. Here’s my 2010 blog.

Psychiatric Advance Directives Make Sense: You should have one!

If you have read my book, this blog, or heard me speak, then you know that the first time my son became psychotic, I raced him to a hospital emergency room. Mike (his name in the book) was delusional, but he didn’t believe anything was wrong with him, and he was convinced that all “pills were poison” so he refused treatment. The emergency room doctor told me that he could not intervene until Mike became an “imminent danger” either to himself or others. That was the law in Virginia at that time.

My son had a right to be “crazy.”

Forty-eight hours later, he was arrested after he broke into an unoccupied house to take a bubble bath.

The second time Mike became psychotic, I waited until he became dangerous and what happened? Our local mobile crisis team refused to come help me, the police were called, and Mike was shot with a Taser.

As a father, those two situations frustrated and enraged me. What I didn’t know at the time was there was an alternative that could have helped Mike and possibly prevented what had happened to us.

It’s called a Psychiatric Advance Directive and this week, I received a wonderful email from my state National Alliance on Mental Illness chapter telling me that PADs, as they are known, are becoming more common in my home state of Virginia.

A PAD is a legal document that is filled-out by a person with a mental illness while he/she is well. (One of the biggest myths about persons with mental disorders is that they are always psychotic and, therefore, incapable of rational thought.) PADs are generally divided into two sections.

The first is a list of preferred medical treatments or instructions for doctors and health care providers about how the ill person would prefer to be treated. In my son’s case, Mike would list which anti-psychotic medications he would prefer and which ones he did not want to take under any circumstances because of the side effects that they cause him. He could select his preferred hospital. He also could write down specific procedures that he did not want done regardless of how sick he became — for instance, ECT (electro shock.)

Many persons with mental illnesses like PADs because PADs give them a voice in their treatment. It empowers them to participate.

The second section in a PAD is commonly called the Health Care Power of Attorney provision and in it, a consumer identifies an responsible agent. That is someone the patient trusts to make medical decisions for him/her. This agent, often a family member, takes charge when the consumer becomes “incapable” of making rational decisions.

Why do I endorse PADs?

First, they empower consumers by giving them control over their own treatment regiments. Mike hates the drug Hadol because that anti-psychotic knocks him out for several days. He would prefer a less potent drug. He also has strong feelings about ECT and he certainly is opposed to being restrained in a straight jacket or with belts. Having a PAD, gives him a voice in how he is going to be treated if he has a relapse.

Do doctors have to follow what Mike wants? They do, but only if his requests fall into acceptable clinical care practices. In other words, Mike can’t demand a shot of Jack Daniels and a rib-eye steak instead of medication, but he can chose Abilify over Zyprexa since both drugs are anti-psychotic medications. (I’m assuming his insurance will pay for either.)

Interestingly, surveys showed that none of the consumers who filled out PADs refused all medication. However, 94 % identified a specific drug of choice and 77 % said they did not want certain drugs.

The second reason why I like PADs is because they empower the consumer to choose someone to speak on their behalf, rather than having a publicly-appointed attorney, protection and advocacy employee, or some other court appointed stranger become their mouthpiece. The agent in a PAD often is a family member or best friend, and bringing that trusted agent into the decision making process makes certain that the consumer has someone speaking for them who knows and cares about them.

But the biggest reason why I endorse PADs is because they shift the standard for when someone can be offered help. No longer does a father have to stand-by and wait for his son to become imminently dangerous — at least not on paper.
This is because PADs can be implemented in most states when “in the opinion of a physician or eligible psychologist the person currently lacks sufficient understanding or capacity to make and communicate mental health treatment decisions.”

What a PAD does is take the focus away from the impractical “dangerousness” criteria and out-of-the hands of an administrative law judge and put it back into the hands of a doctor or psychologist. At the same time, it limits what those doctors and psychologists can do and also guarantees that someone who the consumer trusts is empowered to speak on their behalf and will be watching the doctors.

PADs aren’t foolproof and haven’t been fully tested in courts. I’ve also simplified this explanation. I would strongly urge anyone who has a family member or loved one with a mental illness to investigate PADs.

Dr. Marvin Swartz at Duke University is a national leader in PADs and you can learn more about them by visiting the National Resource Center on Psychiatric Advance Directives and listening to him explain how they work.
You can learn more at the websites operated by the Bazelon Center, NAMI, or the National Mental Health Association listed on my webpage.
Currently only about 50% of states have laws regarding PADs and you need to read the specifics of your state law. But please do. Even if you don’t end up with a PAD, it will be useful for you to hear what your loved one wants done if there is an emergency.
As a father, I assumed I knew what was best for Mike. It took me a while to learn that I needed to listen to him when he was stable and join him in figuring out how best to treat his illness. We became a team, rather than opponents.
Addendum:  After I published this blog, several readers wrote to say that PADS were ineffective. This is because they could be revoked at the last minute by a person who had become psychotic and didn’t believe they were ill.

When I mentioned this to Dr. Suzanne Vogel-Scibilia, a highly respected NAMI leader, medical doctor and a person with a mental illness, she told me that this problem could be avoided if the PAD had a “Ulysses clause.”  Ron Honberg, the national director of policy and legal affairs at NAMI, explained that a Ulysses clause prevents an ill person from nullifying the directive at the last moment.

The name, “Ulysses clause,” originated from the mythical Greek hero, Ulysses, who knew that the lure of the beautiful Sirens was so powerful that he would be compelled to sail his ship towards the rocks they were sitting on, thereby destroying it. To prevent this, he ordered his subordinates to bind him to the mast of the ship and to keep the ship sailing straight, no matter how strongly he argued to the contrary. A Ulysses clause in an advance directive instructs treatment providers about specific treatment preferences, and explains that any statements made refusing treatment during periods of incapacity should be ignored.

If you are going to get a PAD, I would strongly suggest that it includes a Ulysses clause, otherwise you may find yourself with a useless piece of paper during an emergency.

About the author:

Pete Earley is the bestselling author of such books as The Hot House and Crazy. When he is not spending time with his family, he tours the globe advocating for mental health reform.

Learn more about Pete.