Personal Responsibility and Advance Directives

Thursday afternoon, June 21 from 2-3 Pm EST, I am presenting a free webinar, open to all, on the Advance Directive or Crisis Plan. I do these webinars because I want everyone to understand that personal responsibility is key, actually one of the key concepts I discovered in my early studies, to recovery and wellness. Basically, if you, like me, experience mental health challenges in your life, it is up to you to do whatever you can to help yourself get through this hard time. We now know that these difficult times are episodic. The question is how do we successfully maneuver through these times and help ourselves get back to being the kind of people we want to be and doing the things we want to do. You have probably, like me, been “told” or even forced, to use the system and the treatments they provided. Now we are learning that the medications we have been told we must take are actually harming us, even worsening future episodes, and we know that many of us have been traumatized by the system, treatments, facilities and people who were supposed to be helping us. You may be thinking, “Now what do I do?”, “Who do I turn to?”

The answer for me, and many others has been to take personal responsibility by looking to the resources we have ourselves and the people we have come to trust over time and doing everything we can to manage our lives and live well, to prevent recurrences of mental health difficulties and to safely navigate through the difficult times. It means making good use of the times when we are well to put plans in place and take action that will ease our way, and protect us, through future difficulties.

Over the years, I have devoted my efforts to learning from people who, like myself, experience mental health difficulties. There is plenty of information about what we should do and how we should do it from people who have never, or claim to have never, had mental health difficulties. But, when I began my search for answers to my own issues, there was nothing from the people I felt were the experts, people who had a lived experience similar to mine. So that has been my focus. It has become my passion—to find out how people like me get by, be the kind of people they want to be and live the lives they want to live.

To get this information to as many people as possible, I have written books and curriculums, developed a group model that has been integrated into mental health programs around the world, made videos and CD’s, developed computer programs and on-line courses, given numerous addresses, led many training events, developed an educational website, sent out bi-weekly educational e-mails and sent out a quarterly newsletter. I set up the Copeland Center for Wellness and Recovery to insure that the information I have learned would continue to be shared over time.

I have discovered that a new technological innovation, WEBINARS, is a great way to reach people, lots of people, free, with information that could help them help take personal responsibility. Lots of people attend these webinars. Even more people go back to the recordings of them that are on our website. Some of the earlier recordings are more difficult to navigate but the more recent webinars are easily accessible. In one hour I can reach lots and lots of people with something I have learned has been helpful to others. And the availability goes on and on and on.

Thursday I chose to do a webinar on Advance Directives or Crisis Plans. In April I did a webinar that was an overview of WRAP. In May I did one on Living WRAP. Responses indicated that people wanted a webinar on Advance Directives.

I personally feel that having a solid Advance Directive is key to taking personal responsibility and doing what you can to insure that the people you want to take over for you will take over if you cannot take responsibility for yourself, and that they will give you the “help” that really helps you get through this hard time.

When I first developed an Advance Directive format based on what people with a lived experience said they want and need, I was told that it was too long and that doctors wouldn’t have time to read something like that. They said it should be on one side of one sheet of paper. Imagine. I was appalled. There is so much more that a support person needs to know to walk you through and out of a “crisis”. I don’t get complaints about the WRAP Crisis Plan form anymore but I still see that single-sided sheet of paper that everyone is supposed to have. In this webinar, I will be describing the process of developing an Advance Directive or Crisis Plan that really works for you. If you can’t join us, the recording with the Powerpoints will be on line a day or two after the webinar http://www.WRAPandRecoveryBooks.com.

Mary Ellen Copeland, Ph.D.

Change Now: The founder of the Copeland Center for Wellness and Recovery shares her vision of a world where people are supported in using simple, safe, noninvasive self-help tools to get through difficult times and move on with their lives.

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10 thoughts on “Personal Responsibility and Advance Directives

  1. If an advance directive is not legally binding it is next to worthless. It’s not even worth using the words ‘advance directive’, it becomes just a ‘please maybe hopefully do this letter’ addressed meekly to your captors, who, as you admit, will likely not be in the mood to read more than one page.

    I would advise against using the term ‘advance directive’ in a non legally binding context. It may be confused with the binding directives like DNRs, that actually represent people’s wishes and that doctors are actually bound by law to respect.

    In the entire world, I know of only Germany as offering anything approaching an advance directive that would be listened to by the powers that be. And even in the German case, data are scarce on how many of them are being respected by coercive psychiatry there, and the German AD laws are very new only a couple of years old.

    • In Scotland we use the term Advance Statement and it can benefit the person who takes time and thought to construct it, stating what they want and don’t want to happen. It has been our experience that it holds weight and is listened to by psychiatrists.

      My son is presently redrafting his to incorporate more details, since his last inpatient stay. He is doing this along with professionals – psychiatrist and CPN (community psychiatric nurse). We look upon this document as a way of his influencing what happens to him in a crisis.

      As a WRAP Facilitator I have found the Crisis Plan in WRAP to be a useful tool in helping to form an Advance Statement. It could also be inserted as a whole into the statement. Anything that helps a person to be heard and to have control when having to enter the psychiatric system is useful. Working on the crisis plan/advance statement encourages self management and increases self confidence, promoting recovery.

      Thank you Mary Ellen for your WRAP work and blog posting.

      Regards, Chrys

      • If psychiatrists are not forced by law to abide by the ‘statement’, I see little value in drafting one.

        I believe you could tattoo it to your skin, and psychiatry would still strip you naked and forcibly inject you.

        It terrifies me to think anybody is working alongside a psychiatrist, and one of their goons, a ‘psychiatric nurse’, to draft this ‘statement’. It sounds like asking the fox to help you draw up design plans for the hen-house.

        “Anything that helps a person to be heard and to have control when having to enter the psychiatric system is useful. ”

        First I dispute there is ever a ‘have to’ when it comes to degrading a human being by forcing them into psychiatry. If they are being forced into a ‘system’, they by definition are not ‘being heard’.

        I don’t want any word that I’ve ever spoken to be heard, so much as I want the word ‘no’ to be heard. I know I could tattoo no on my forehead, and carry a ‘statement’ around saying no, and without the protection of the law, I would still be subjected to my worst nightmares.

        If a ‘statement’ contains hundreds or thousands of pretty words and platitudes, yet we are not allowed to put one simple word ‘no’ in there and have it listened to, it is an affront to human dignity.

        I highly doubt that anyone in Scotland is putting ‘no psychiatric drugs or detention’ on their ‘advance statement’ and having that wish respected.

        We need legally binding protection of our wills and directives. Iron clad legally binding protection that can’t be altered or pushed aside in any way by anybody.

        • In Scotland the community psychiatric nurse provides face to face support in the community, building a relationship with the person they support. I personally found my CPN very helpful in my own recovery journey back in 2003/4, after hospitalisation and psychiatric medication. They often visit people in their own homes and are person centred in their approach.

          Some of us end up in the psychiatric system because of our mental distress. Ideally it would be great if we had alternatives to this and I for one am working towards this. However at present we have to work with what we’ve got while challenging the system and promoting alternatives.

          • “In Scotland the community psychiatric nurse provides face to face support in the community, building a relationship with the person they support.”

            That sounds like a brochure.

            I have had such people forced on me by my government, ‘vistiting’ me against my will in my home, claiming they are ‘supporting’ me, I saw right through them.

            Leaving people alone, is ALWAYS a choice other people have when it comes to whether or not to force someone into psychiatry.

            I understand that you believe, or appear to believe from what you’ve written here, that psychiatric nurses are real nurses, that psychiatric drugs are real ‘medication’, I don’t believe in the validity of these things. Therefore I abhor the thought of ever again being forced to allow some minimally educated social worker type from the government into my home.

            This post is about advance directives.

            I want a strong, legally binding advance directive to protect me from having ANY contact with government psychiatry related personnel. There is no service I want from the government in relation to the ridiculous concept of ‘mental health’.

            I want protection from the government. Rights, iron clad rights, and protection.

            I understand you may feel you want some kind of ‘service’ provided by a collective government or something. That’s your prerogative, I just want the right to say no and to be able to stay as far away from government interference in my life as possible.

            If I commit a crime I’ll go to prison. If I haven’t committed a crime, what I do and believe is none of the government’s business.

  2. In Scotland we choose to have a CPN, community psychiatric nurse, give us support. (The job title refers to a person working in the psychiatric system and in the community.) It is not forced upon us and was not forced upon me. However I have been given psychiatric drugs against my will as an inpatient and I don’t agree with this. Hence my work in mental health to promote and support alternatives, led by peers.

    I have never found neuroleptics to be useful and the challenge has always been in the tapering and getting off them completely and recovering. Which I have done on 3 occasions, after psychotic episodes and hospitalisation in 1978, 1984 and 2002. And I have helped family members do the same.

    The force we experienced was in the hospital setting when being ‘non-compliant’. When we got out of hospital it was a matter of taking charge of our own mental health. Which was possible although not easy, mainly because of lack of confidence and decision-making abilities, due to psychiatric drugs. And a paternalistic psychiatric system.

    I would like to see peer led crisis services/alternatives and to this end am involved in many national groups, as a peer and survivor, to promote this and to speak about my lived experience. I expect the psychiatric system to change and that is why I am involved, in activism and in having a voice.

  3. thank you for starting this discussion, dr. copeland. i just got my advance care directive done to save my family from the stress of figuring out my last wishes. i’m just a regular citizen with no expertise in the law or medicine, but what i have been old is US courts are good about trying to interpret the written wishes of individuals. everyone’s situation is different. if you think a shorter form will fit your situation better, here is a free site i found with advance directives for all 50 states.
    http://www.paperwell.com/contracts/living-will

    good luck and god bless all!

  4. I am afraid the CPN was forced onto my son here in the Middlands. All my son wanted was to be left alone to recover. She spent her time brainwashing my son: telling him that he was “mentally ill” behind my back because she knew I was disagreeing with her. My son had no choice but to play along because he feared that he would be forced back into hospital. He was fine. He had taken himself off the medication without their consent and the mental health services didn’t like it. He didn’t get any other useful support: all “They” were doing was watching him, sure that he would relapse and prove them right. At the end he tried to make himself scarce and thus shake them off

  5. Mary Ellen,

    Thank you so much for reaching out and sharing your wellness strategies through your webinars. They have been wonderful to share as resources for families as we are starting our Family Dens.

    I understand that our state and many others do not have to honor advance directives. In one of your earlier webinars, you shared that a key strategy, in addition to taking responsibility for identifying wellness tools and using them proactively, is to develop a community of supportive friends/family who can help remind you of your wishes and tools in times of overwhelm. While hospitals may not have to honor advance directives, friends, family, peers, spiritual advisors, etc. may redeploy appreciate the guidance and opportunity to help.

    It also seems that crisis planning, in and of itself, may be therapeutic by giving voice to the wisdom of the real expert. Whether or not it is always heard, at least can be said, “I know my needs best and I will state them. It is my right, as a human being, to be treated with dignity and respect, even when I am overwhelmed.”

    I remember that our natural birth plan was also ignored by our traditional hospital staff. But, having poured time and energy into developing it before our daughter’s birth helped us advocate for our rights and preferences each time our plan was ignored.

    Until such time as they are honored, we can at least be intention about our right to self-directed care.

    Thank you for making this part if your WRAP recovery process.

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