From My Files Friday: Psychiatric advance directives are more common today than they were when my son suffered his first breakdown or when I first wrote about them 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. I’d like to hear from anyone who has a PAD or has had experience using one — so please leave a comment and tell us whether or not a PAD helped in your situation.
Psychiatric Advance Directives Make Sense, first published March 23, 2010
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 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.
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 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.
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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:
Thank you Pete! this is very useful–especially the Ulysses clause information. it would be so much better if we had a system that would help us become at “team.”
I looked into one but since they can be overridden in case of emergency (at least in my state) I have not filled one out. In my opinion, that defeats the whole purpose. Also, I think there should be no such thing as a psychiatric advance directive. There should just be a single advance directive just like in other areas of medicine. Singling out psychiatric disorders for a special advance directive further stigmatizes patients. Psychiatric disorders should not treated any differently. I also think the reason none have selected no medications is that they know that this will not be followed in case of an emergency, and their wishes would not be respected anyway.
Maybe having one is better than nothing but since a psychiatrist can override it, it seems pretty worthless to me personally.
i’m so proud of pete earley for not only pointing out the terrible flaws (understatement of the century) in our system, but also because he’s a practical, helpful voice for so many, on such a wide variety of topics in severe mental illness; he’s supports his son’s humanity and dignity and choices, so very hard to do as parents when we’ve seen them so ill and know where some of those choices may lead. big learning curve, and none of us are equipped with anything but Love up front; no experience, very hard to accept the truth even. thanks again to mr. earley for more good reminders:)
Even when my daughter was not psychotic she still suffered from the symptom of anosognosia (lack of insight that she had an illness that required medication). She wouldn’t have filled out a PAD suggesting what type of treatment should be provided because she never believed she was ill or ever needed any type of treatment at all. Advanced directives are only helpful if an individual has some level of awareness. Just because psychosis is absent does not mean they have an awareness of having a mental illness and need for treatment.
There is more to ‘anosognosia’ than its’ being another handy term for
psychiatrists to identify something they can’t explain. I’m sure there’ll be a term soon for people who enjoy bullying and won’t stop! Denial of mental ilness has been around for as long as mental illness has. Today, we can take video-cam, photos, and save stuff that shows how the mentally ill person was indeed ill. We can record their psychotic verbiage, and present them w/ very real after the fact evidence. No one wants to believe that they have errors in their thinking, that their brain is not working right. Even ‘normal’ people don’t want to critically look at their abberant ways.
This is not a symptom – by saying it is, releases the doctors from responsibility to treat it, and gives them a reason to over medicate and court order treatment.
There is an inborn belief in all of us that we are thinking clearly and operating normally in our world. None of us could tie our shoes or plant a garden if we didn’t believe we were capable of method thinking/action.
That is one simple way our brains work. We are wired to trust ourselves,
including our thinking processes. To admit our thinking and feeeling brain has gone wrong, is to admit that we have broken down and disappeared
into some strange state of non-existence.If you can realize that every human is it’s own best friend, then maybe you will understand how admitting mental illness is the most self-devastating, humbling, horrorfying thing a person can do. With much love, patience, true empathy, gentleness and extreme compassion, one can approach a person w/ ‘anosognosia’, and over time, they may be able to see themselves objectively. Can you step outside yourself and see yourself in another light? That’s whats going on. The mentally ill are the bravest people on earth.
PADs and living wills are very helpful documents for individuals with a mental illness and their familes. For individuals with clarity and the determination to clearly state their wants and needs, the health proxy document is empowering. What may be difficult for many individuals is finding someone they trust to put into action their medical decisions. PADs are relatively new so I don’t know how legally binding they are. Still, it is better to have one than not.
Terri
Has anyone (reader) put the Ulysses Clause to the test, tried it out?
Terri
Hi Pete, my sister was 911 reported missing, endangered, a suicide in progress by her preacher at 11:00a.m. & she would not be found until 6,6:30p.m.less than .335 of a mile from her cell tower & her government provided Safelink/Lifeline cellphone was E911 enabled. One of the main reasons for government provided cellphones to those in need was for them to be able to call for help in an emergency & these phones are easily tracked. Still no answers from law enforcement or local government officials. Holly Phields Farmer Oct 10 1957 Deceased September 8 2010. Holly was diagnosed with multiple mental illness’s after 911as she was a 23 year United Airlines flight attendant working that day. Known well to public safety officers & the county mental health dept. Where she was a patient & homeless at the time of her death as the shelter she was staying at put her out 2 days prior to her death knowing of her suicide attempt 10 days prior? Holly reached out but who was there to grab her hand, hear her cries for help?