The Unintended Consequences of Focusing on Recovery in Schizophrenia

By Marvin Ross

Much has been said in this blog by my colleague Dr David Laing Dawson and myself on the concept of recovery. Wouldn’t it be wonderful if full recovery was possible but it isn’t. However, I really should clarify that somewhat. Schizophrenia should probably be referred to as a spectrum disorder like autism.

When Bleuler first coined the term in 1908, he referred to it as the schizophrenias and said that it was a physical disease process characterized by exacerbations and remissions. No one was ever completely “cured” of schizophrenia — there was always some sort of lasting cognitive weakness or defect that was manifest in behavior. Unfortunately, over the years, it began to be considered to be one disease only.

In a recent article in Psychology Today, University of Toronto medical historian, Edward Shorter, had this to say. In adolescent-onset schizophrenia, some don’t recover at all; others make only a “social recovery,” and some maybe go on to have a normal life or “Maybe not”. Shorter then adds that “The field has made virtually no progress in unpacking chronic severe illness and differentiating out several distinct entities. In no other field of medicine would this be conceivable!” and “Some involve loss of brain tissue, others don’t. Some have to stay on meds, others don’t. Some get well, others don’t. These are not all the same illness!”

In fact, it has long been recognized that there are three outcomes to schizophrenia. Roughly a third are treatment resistant and remain very ill, a third can be helped with meds and other treatment modalities to improve sufficiently to lead a reasonable but disabled life, and a third will have one psychotic episode, receive treatment and never have another or any long term deficits.

According to the Treatment Advocacy Center, 10 years after diagnosis, “one-fourth of those with schizophrenia have recovered completely, one-fourth have improved considerably, and one-fourth have improved modestly. Fifteen percent have not improved, and 10 percent are dead.”

How do you think the families of the majority of those with non recoverable schizophrenia or the individuals themselves will feel when we hold up to them what is achievable by only 25%? And, we tell them that it is achievable. Why can’t I (or my son or daughter) achieve that. Have I done something wrong? Cancer is an interesting analogy. There is not one cancer but many. And each cancer has its own unique characteristics and prognosis.

Non melanoma skin cancer (basal cell and squamous cell) have 5 year survivals of 95% and 90%. In contrast, the 5 year survival for pancreatic cancer ranges from 1% for stage IV to 14% from stage 1A. Imagine if we told those with stage IV pancreatic cancer not to worry because 5 year survival is 95%. Ridiculous isn’t it but that is what we tell people with schizophrenia. Don’t worry, you should be able to recover because 25% do.

Now, I’m not saying to abandon hope but rather to be realistic and pushing recovery is not realistic if it is not qualified.

The second problem was mentioned to me by my friend Kathy Mochnacki of Home on the Hill in Richmond Hill Ontario. She pointed out that if you claim that recovery is possible, then why continue doing research. People can recover so no need for it. Of course, scientists know better but they are dependent on funding from governments and other agencies.

So, let’s all inject some scientific reality into a very troubling and serious disease.

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15 thoughts on “The Unintended Consequences of Focusing on Recovery in Schizophrenia

  1. I simply cannot fail to feel the sane voice of reality from every Mind You article and this is no exception. As always wonderfully articulated and with ‘face validity’ in heaps.

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  2. Thank you Marvin, for giving me credit for suggesting the term “recovery” could promote a disincentive for funders to support research into finding new medicines to help mitigate the effects of this cruel illness. I believe that my thinking evolved from reading Dr. Dawson’s blog about his thoughts on the concept of “recovery”.

    Thank you also for mentioning “Home on the Hill”, a grass roots organization whose Board consists of family caregivers who deal on a daily basis, not only with the devastation caused to our ill loved ones, but a system which often will not listen to our observations.

    It does not help us to cloud this already difficult atmosphere by terms using such as “recovery”.

    Family caregivers can suffer from burnout caused by trying to engage with a sometimes difficult system, and the documented misuse of privacy legislation, and compassion fatigue from seeing our ill relative suffer on a chronic basis.

    There is no time to address our own grief at losing an adult child or relative to this cruel disease. While waiting for the much needed funding for supportive housing, and continuing to advocate for better treatments, Home on the Hill is supporting families. Beginning on September 24, 2015, Home on the Hill will start to build a support program building upon our successful lecture series. This support group will explore the areas of self- care and grief.

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  3. This is about as absurd as those discussing world hunger seeing that it can’t be solved because so many people are left to die of hunger and poverty. Have you ever considered that the approach to treatment be changed? Have you ever considered that schizophrenia is an illness clearly rooted in early trauma and that it would be viable that one therapeutically works with biography and deeper issues so far in the ground that the person involved might not even have memory? Open dialogue works like this and their revived patients are statistically so many, that hospitals have been closed. Please do your research and stop thinking and arguing within the same box as all the faulty psychiatry will have one do. ..because they are hopelessly on the wrong road.

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  4. very good and realistic message.. I belienve we need to have huge add campaigns for research funding for schizophrenia and bipolar illness in particular….look at all the dollars that go to breast cancer for one example…and I’m a woman and great but how do we get the ball rolling on this with the public!!!?

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  5. By the way, I was referring to the article by Marvin Ross as good and realistic.! Also the cause of schizophrenia is not clearly rooted in early trauma…Please study on this Stephanie.

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    1. I agree . The statement by Stephanie re: early trauma( I assume that she means abuse or emotional trauma of some sort) has been a very blind alley to pursue and often in my view may inflicted harm to those who suffer from serious mental illness. Stephanie should understand that flawed biology can inflict another kind of trauma. The Open Dialogue Program in my view only persists in myth making.

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  6. Confusion comes from using the term “recovery”, which to many people suggests “cure” even though that is clearly not what is meant in serious academic papers on the topic. Replacing the term “recovery” with a more clear-cut term might be helpful. However, it is most important that we don’t discard the well documented observation underpinning the recovery philosophy — that people with schizophrenia have the potential to achieve personal and life goals in spite of residual symptoms. Nobody expects someone to “recover” all by themselves. To the contrary, the conviction that they have this potential drives funding for support programs to help them reach their social, educational and employment goals instead of just sitting around wasting their lives in an impoverished condition because nobody thinks they can achieve anything. These programs include a range of biological-psychological-social-spiritual supports that give people opportunities to improve their quality of life. People involved in these programs don’t actually use the term “recovery” much at all. Instead, they tend to use more specific language. For example, a program called “Walking for Health” is a “recovery” program; but specifically,it is about getting off the couch, getting physical exercise and making friends.

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    1. These programs are well intended but often never evaluated for their effectiveness. This lack of evaluation of community programs for those with serious mental illness is in fact another sign of discrimination toward those affected by mental illness, in my opinion. When service providers are asked about their reluctance to evaluate programs, the answers can be defensive.

      In the early 90’s, NAMI conducted a survey of participant’s experiences with community programs and 40% of consumers said that they were dissatisfied with community programs.

      Does that not send a message?

      Our family member has not benefited by community programs. In fact, he has probably been harmed. Recently, a consultant from the Central LHIN conducted a family focus group to determine the family experience with services. He asked a leading question: “Have services caused harm to your relative” to which I answered “Yes”.

      Further, trying to communicate with these agencies is a big stressor on an already stressed out family. Misuse of privacy legislation and mistreatment of families has been documented in the literature.

      I would prefer that the medical consequences of serious mental illness be addressed first, through research and exploring better medicines, before divesting even further public funds into unevaluated services.

      The mental health system has historically resisted implementing well developed recommendations to better services. Just look at the MHCC’s Family Guidelines which just sit on the shelf.

      So let us cut our losses and look elsewhere for improvements.

      Further, professionals in the mental health field including some psychiatrists and GP’s literally do not have the same 24/7 experience with a psychotic illness that families do.

      Families see the individual in his/her natural setting, and that fact needs to have more recognition.

      Public funds to enhance the well being of the ill relative and provide respite for the family should go directly to families who know their individual’s needs and their support needs best. Families need to hire trained support workers directly without any of the involvement with top heavy expensive agencies with their own expensive agendas.

      This is already happening in the Developmental Sector. I know already of one innovative business that contracts out directly to school boards, agencies and families. Their staff are selected for their empathy and skills.

      Direct family involvement in the care of their relative is the most effective modality.
      All the hullaballoo about “recovery oriented services’ has been one big red herring.

      Some of the people who trumpeting this approach actually believe that psychosis is the result of early trauma. The pain that these “mental health advocate” people cause families in unforgiveable.

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  7. I admire your thoughtful writing.
    But aren’t you distorting the way the term “recovery” means as used by psychiatrists such as Dr. Mark Ragins or those in the consumer movement– living with an illness , managing it, and yet being capable and deserving of having a rich life including work, family, etc?

    Are you setting up a false straw man — by saying people in mental health field are claiming that those with schizophrenia can be “recovered” as in totally cured? I don’t think that’s how the term is used

    In my article on antipsychotics, I quote at length from Dr. Mark Ragins… here’s his writings on recovery. He is founding medical director of The village in Long Beach, and really a model of nuanced, non-ideological approach to dealing with severe mental illness (and uses medication in a judicious way): http://mhavillage.squarespace.com/writings/

    My article,in last half, quoting him:http://www.huffingtonpost.com/art-levine/abilify-is-top-selling-us_b_6282684.html

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    1. Thanks for your comments Art. There are those who do say that people can completely recover which does not take into account that there are many who are treatment resistant. There does tend to be a lot of hype about recovery and that often does not take into account that recovery is a personal thing meaning being able to do the best you can with what you’ve been dealt. I don’t think we really differ on that. In your Huf Po you talked about off label use of abilify but that is a problem with many classes of drugs and does not negate the benefit drugs have for those with whom it is used appropriately. As for Whitaker, take a look at my two Huf Po blogs Journalists are not medical experts and Leave the schizophrenia diagnosis to the experts please. There have also been many negative reviews of the British Psychology Association’s recent paper some of which I cover in last weeks blog on this post.

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