Schizophrenia and forced treatment.

A Beautiful Free Spirit, A and B Larsen orchids, Wiki Commons

  PHOTO CREDIT:  Arne and Bent Larsen via Wiki Commons

I was hopeful when my son began receiving services with an Assertive Community Treatment (ACT) team, even though the way their relationship came about was not the perfect situation.

My son was in the hospital, having been admitted to the wrong floor.  The inpatient attending physician wasn’t happy to learn that he’d been admitted to her unit over the weekend when she wasn’t working.  The unit was for treating “disorders” such as depression and perhaps bipolar.  The other unit is where a patient went if he or she made reference to or exhibited signs of hearing voices, having hallucinations and/or signs of a cognitive thinking process deemed abnormal or delusional.  

The treating psychiatrist had a poor attitude.  She admitted to me that she had told my son that if he said anything she didn’t like, she would send him to another hospital that was not as desirable as the one he was in.

During a meeting she told my son the only way he could get discharged right away was to agree to sign on with an ACT team, which is what he did.

Before entering the hospital he’d been working with another team of mental healthcare providers that we both liked, but he was rebelling and not conforming to rules, after having been transported from the place we had called home for about six years. 

I felt that the earlier team gave up on him when symptoms of the illness they were treating him for flared, but they said the ACT team could serve him better.

Several years have passed since then.  I can’t be sure the good outweighs the bad in our personal experience of having ACT services.  There were good social workers who my son was very fond of, but they didn’t have much time.

Communication with this ACT team has been frustrating so much of the time.  For extended periods they’ve neglected my son.  They call this being, “engaged observers,” and always have either an excuse, such as too much paper work to get to him, or they blame him for not being easy to find on the downtown streets, which is how they often catch up with their clients.

I communicated with them once that my son needed help.  They agreed.  He was not doing well.  Their approach that time was to suggest that I leave him alone, at least for a couple of weeks or, “however long it takes for him to deteriorate,” his social worker suggested.  I liked the social worker, but I didn’t like the suggestion.

My son was living alone and certainly needed help.  I needed help helping him.  He was not, “sick” enough to be committed to a hospital psychiatric unit at that time.  The idea was to get him some help if he was an inpatient, they said.  I’ve since learned that this means forced medication.

The social worker told me they (his ACT team) believed that me inviting my son to my home, where we would have dinner and spend time with the dogs, one of whom is his, was helping him to stay well or rather, not letting him deteriorate to the point where they could have him involuntarily committed.  They suggested that I stop visiting him or inviting him to my house. 

“Just don’t answer the phone if he calls,”  a social worker told me.

I think this social worker had good intentions, I guess, but he just didn’t get it.  He didn’t have children yet.  None of the social workers on the team had any and many of them are younger than my son is.  We need some elders in these jobs.

ACT teams strive to keep people (consumers or clients) out of hospitals and in the community, but involuntarily commitment remains a common practice for social workers and ACT teams.

We were all in agreement that one of my son’s assets and at that time, probably his only asset was family involvement.  I am his family.  And our two dogs.

Their evidence-based treatment submits that patients who have family support fare better than those who don’t have it.

The ACT team have suggested several actions they believed would help my son since they became my son’s treatment team, a few of which made sense and some of which, I felt that I had no alternative but to agree with. 

I couldn’t go along with what felt to me like abandoning my son so he would get sick enough for a commitment.  I tried it for about a day and a half.  I decided not to go against my gut and my mother’s instinct.  I would not take away the only connection my son had to the outside world so that he would get worse.  Nothing about it makes good sense to me.

“You won’t always be around,” I was also told.

“Well, I’m not dead yet!”  I told the young social worker.  I’m not even a senior citizen yet.  I still have time to help see a difference in the healthcare my son receives, I hope, along with a change in American cultural perceptions about people whose brains work differently than “normal” brains.

The ACT team and I have also had disagreements about whether my son should have had antipsychotics forced on him.  I do not support this treatment for my son.  I think it is against his human and civil rights.

One time he went to the hospital for symptoms of depression.  The ACT team wanted him to be committed for a long-term stay, even though the hospital’s rehabilitation unit was closed at that time.  The hospital said if he stayed he would spend all his time in the day room watching television.  They said he would not receive therapy, but that they could force injections of medication on him.

I prayed.

creative mindsThe inpatient psychiatrist assigned to my son the next day was awesome.  He did not force antipsychotic treatment on his patient.  He said it would be like breaking his spirit. 

He spoke candidly with me about his opinions, which I agreed with and was truly grateful to hear.  He said he could not in his good heart force drugs on my son after having met and talked with him several times.

The doctor said something like… Your son has a free spirit.  He also has a strong adverse opinion about this medication.  He talked about the fact that my son was not a danger to himself or others, that he had not committed a crime or even bothered anyone.  Forcing a medication/drug on him didn’t feel right to the doctor nor myself.

The doctor was kind to speak to me while my son was there.  The only reason my son had to stay more than a few days was because I was trying to get the ACT team to come up and join us in an outpatient treatment planning meeting.  Everyone agreed that we needed a different plan.  The ACT team never showed for a meeting, and the doctor wished me well in pursuing other avenues of healthcare for my son after discharge.

He may not live the life you had expected, the doctor had told me, which I realized, but he has the potential to have a good life, without antipsychotics.  We discussed the fact that sometimes the side-effects of those drugs are worse than the illness, which in my opinion is a rare conversation to have with a psychiatrist.

The ACT team did not like that medication wasn’t forced on my son after he’d stated he did not want it.  They said it was most unfortunate that my son had this particular doctor.  I was aghast.  They said it only enforced my son’s belief that he does not need an antipsychotic drug.  I totally disagree.

I told them that I welcomed the doctor’s honest conversations with me.  I appreciated that he saw my son instead of a number or rather, a diagnosis waiting for a pill or an injection.

The ACT team’s psychiatrist told me this scenario (my son having access to a listening and caring psychiatrist) wouldn’t happen again.  She said she had many contacts at that hospital.   She said the next time my son needed medical attention that she could make sure he would be assigned to a psychiatrist whom she was acquainted with.  I didn’t think this was a good thing, and I would discover, eventually, that I had been correct.

“The next chance I have, I want you to know that I will advocate for a long-term commitment with forced medication for your son,” the psychiatrist told me in an angry tone.

I told her she should not act out of anger or frustration when it came to my son’s care.  He should not be committed because she was/is angry that things didn’t go her way or that the inpatient psychiatrist did not agree with what she wanted.  And most certainly, a commitment should not be planned for an indefinite time, before one is even needed.  That’s like a threat.  No, actually, it was a threat.

I’ve never had the same amount of trust in ACT services as I had before that conversation with their psychiatrist.

Thank you for visiting Dogkisses’s blog.  Please see link above for photo credit and copyright information for the beautiful orchid via Wiki Commons. 

 

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12 responses to this post.

  1. Posted by Ellen on March 16, 2010 at 1:15 PM

    I am a person with bipolar disorder- the severe and persistent type. I find it bewildering and appalling that the ACT team’s treatment plan is to have your son committed. Unfortuntely, I have first-hand experience with being committed. I have no understanding of how the treatment I received could be regarded as therapuetic. I found the experience utterly traumatizing. The state hospital I was in “warehoused” the severely mentally ill. I received inadequate treatment also. I was seen by the psychiatrist for a total of 15 minutes in the 15 days I was institutionalized. I said and did anything to get out of there. My family has abandoned me and the situation is very painful for me. It is my guess that your love and support for your son gives him the strength to carry on. I hope you continue to be strong and follow your “gut.”

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    • Ellen– Thank you for reading and sharing some of your own story.
      I’m sorry to hear that you were committed, and most esp., that you were not given good treatment. I don’t know where you’re from but involuntary commitment to a psychiatric ward (whether it be in the local hospital or at the state’s institution), is a common, truly a daily practice where I’m from. This goes for ACT teams too.
      ACT teams are supposed to work to try and keep people out of hospitals. I think the ones I’m familiar with indeed do try —
      Regarding involuntary commitment, I cannot say that I had an alternative answer at the time he was committed. I really can’t. He was very sick. He could have hurt himself.
      One thing is for sure though, when he was in hospitals, I was right there. I made myself known to the nurses and the doctors. I left my number with everyone. I made my opinion of forced medication known. I think this makes a difference in the treatment a patient receives, although, not always.
      I am so sorry your family has abandoned you. This is common too you know, but most certainly, doesn’t make the person abandoned feel better does it? I know the feeling of abandonment Ellen. I really do. It hurts like no tomorrow!
      I hope you get this reply. Please let me know if you do. I would love to hear from you again.
      I wish you many blessings and a better future, just as I wish for my son and I.
      Thank you again for sharing here. I am honored.

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      • Posted by Ellen on March 19, 2010 at 4:51 PM

        Thank you for your response. I am from Northern Virginia. It is necessary to seek commitment of someone when they are at risk for suicide/homicide or substantially unable to care for themselves. And I truly understand that you had no alternate with your son. You are obviously an exceptional parent. However, my parents’ commitment of me was the equivalent of dropping an unwanted puppy off at the pound. Many people seek commitment of family members because they don’t want to deal with the person or the person’s problems. In short, the system is easily abused. I do not think my story is exceptional at all. In fact, I believe my story is all-too-common. The mentally ill are subjected to societal discrimination and are “voiceless.” I feel honored by your respectful and thoughtful reply and I wish you and your son all the best.

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        • Hi Ellen,
          I wanted to not be so tired when I replied but — am still tired. Thank you for your kind words.
          I agree that the system is easily abused. I hope you are experiencing freedom and have some support. I know everyone says things like that or they do to me. Always asking if I have “support.” Well, sometimes yes and other times no. Thanks again for adding to my blog. I appreciate your sharing here. Have a blessed day.

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        • Hi Ellen– just wanted to make sure you saw my prior comment above to you– I hope you will visit again.

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      • kathy I don’t know what happened, but did you get my message? Let us know okay!!

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  2. I’m so sorry your son is not doing well right now.
    I have heard and seen what a tremendous help animals can be when it comes to recovery. I would love to get my son a dog. There’s something about an animal that has a ‘calming’ and healing effect.
    You seem very determined to do whatever it takes to help you and your son. For that, I applaud you.

    Best wishes~

    ~V.

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    • Thank you Victoria. It is a hard road, that is for sure, but I guess the only thing to do is take it one day at a time. I would like to think of tomorrow but today I can only think of this day and hoping things don’t blow up. I know you understand this. Thanks for the encouragement.

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  3. I’m glad you didn’t go along with their advice to abandon your son so he would deteriorate — I’m actually horrified that they thought that was a good idea. A support network that keeps people well enough to stay out of hospital is a good thing!

    I wonder if there are any cultural differences at play here–I don’t know anything about the US mental health system or how it’s supposed to work.

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    • Hi Jeneli–Good question about the culture, but I’m not sure. And thanks for your support. Believe me, I too was horrified. My son’s dad passed a long time ago and boy did I feel alone in the world, as I do much of the time.
      My son was already having a whole bunch of symptoms. His ACT team said as long as he kept visiting me, seeing his dog, etc… that he would not deteriorate enough so they could get commitment papers. One thing seems clear where I live, which is next to two medical schools, is that the majority of people do not question the actions of this ACT team. They have such a fine reputation and their claim to fame is their “evidence-based treatment.”
      I could write many articles on bazaar experiences I’ve had with this team and I mean BAZAAR!
      As I write, the exact situation is happening. My son is sleeping and he’s not doing so well at all. I brought him here because he was all alone without a dog in his apartment, which is 20 minutes away. I think his dog helps him. I try to stay calm, although this is hard.
      I’m scared of antipsychotics yet my son needs help. He took a small dose of medication last night and I can’t believe that. I know when he agrees to take it he is not feeling well at all. I am very sad right now. Very very sad.
      Thank you for commenting and I’m glad we “found” each other’s blog.
      PS My best friend is an anthropologist who goes to Africa quite often. I ask him about people in the tribe(s) he knows and he says he doesn’t know of anyone with shizophrenia, but then he says they don’t get treatment and diagnosed like we do, that they might say that person is different and find something unique for them to do. He studies nomads so it isn’t like they can stop, keep the goats outside, and go get some commitment papers you know. Now, I have an idea for a post, so I will write.

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  4. Wow. I can relate to this story in so many ways. My son who is only 14 has been placed in a number of treatment facilities over the past few years. Every time I left him I felt my heart sink – even though I was told by doctors & social workers that it was for the best. It is truly a life-altering event when you forced to make such difficult decisions.
    Also – I truly believe that telling your story is a wonderful & positive way to begin your own healing process.
    Best of luck to you & your family.

    ~Victoria

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    • Victoria — hi, just wanted to say again I feel for you. It is an extremely difficult life to live when someone you love has –updated comment on May 23, 2012: when someone you love has what I ask myself now? I am not sure I know what schizophrenia is or isn’t anymore. I know that the mental healthcare system and using antipsychotics like candy is not working and is bringing harm to people. It may not be the ‘illness’ that makes life so difficult, but instead has more to do with the lack of good, kind, ethical and humane care.

      All the best to you and keep up your writing too.

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