If you have read my book, this blog, or heard me speak, then you know that the first time my son, Mike, became psychotic, I raced him to a hospital emergency room seeking help. Mike 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. Mike had a right to be “crazy.” Forty-eight hours later, Mike 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 about how 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 identify a hospital where he wanted or didn’t want to go. 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 “consumers” –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 agent who is someone the consumer trusts to make medical decisions for him/her. This person, often a family member, is someone who 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 ribeye steak instead of medication, but he can elect Zyprexa over Abilify, since both drugs are anti-psychotic medications.
(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. This 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.
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KICKING A DEAD HORSE —
The Burger King advertising fiasco made the Stephen Colbert Nation television show on the comedy channel. He mentions it about nine minutes into his program.
And no, I have not heard back from Burger King’s Chairman John W. Chidsey, even though I sent him a copy of my book. Do you think he will notice if I boycott the King?
Have a good weekend!
About the author:
I agree that Mental Health Advance Directives should be filled out by anyone with a mental illness who wants to state their treatment preferences so that their wishes are known when admitted into a hospital. However, for someone with anosognosia who does not believe that they have an illness that requires treatment (including medications), they wouldn't want to request any treatment at all. You recently wrote about the tragic story of the Bruce family and I doubt very much that an advance directive would have made much of a difference as would have the recognition by the mental health system and treatment laws that Willy needed to be provided the treatment that he wasn't aware he needed. The parents, Joe and Amy, sounded like they were wonderful, supportive people who certainly did all they could to team with their son. I'm thankful to know that their state, Maine, now has a common sense AOT treatment law, thanks to the advocacy efforts of the father, to help those who often are the most neglected and vulnerable.
Thank you for the reminder about PADs. I will be passing this on to staff when I get into work today.
PADs sound great but I truly believe they don't always work. In the case of my loved one —- when he is doing well he “might be open to a PAD but the second his symptoms start start up again and he becomes psycotic he once again begins the all too familiar attitude of “there isn't anything wrong with me” and he does not want the PAD applied anymore. So as the person above says — when anosognosia is involved you may as well throw the PAD out the window–we are back at square one waiting for him to become dangerous enough to get the help he needs so desperately!!!
PADs sound great but I truly believe they don't always work. In the case of my loved one —- when he is doing well he “might be open to a PAD but the second his symptoms start start up again and he becomes psycotic he once again begins the all too familiar attitude of “there isn't anything wrong with me” and he does not want the PAD applied anymore. So as the person above says — when anosognosia is involved you may as well throw the PAD out the window–we are back at square one waiting for him to become dangerous enough to get the help he needs so desperately!!!