Listening to an interview that Katherine Flannery Dering did last week about her book Shot in the Head A Sister’s Memoir, A Brother’s Struggle reminded me about how our emphasis on “recovery” in schizophrenia can actually hurt its victims and their families. As she explained in her interview, Ms Dering’s brother, Paul, was one of the many for whom recovery was and is a dream. Perhaps it is time that we applied some reality to schizophrenia outcomes before we wave the recovery flag for everyone. By not doing so, we make those with a horrible disease and their families suffer even more.
The professional version of the Merck Manual which is a highly respected medical source for all illnesses states that “Overall, one third of patients achieve significant and lasting improvement; one third improve somewhat but have intermittent relapses and residual disability; and one third are severely and permanently incapacitated. Only about 15% of all patients fully return to their pre-illness level of functioning.”
These outcomes have not really changed much over the years although, as a UK source states, “Early intervention and more effective treatment mean that the outlook is not as bleak as it once was.” Still, why do we act as if everyone is going to get completely better?
The term recovery does tend to imply that the person is cured. Recovery in schizophrenia is defined by the Scottish Recovery Network as “being able to live a meaningful and satisfying life, as defined by each person, in the presence or absence of symptoms”.
The goal for each person should be tempered by the reality of their situation. For someone like Ms. Dering’s brother, over time, they realized that the best the family could hope for was stability and compliance with the rules of his group home. Yet too many in the mental health community tend to set up “recovery” meaning “completely better” as a universally achievable goal. And then when the majority do not, and cannot achieve that goal, they and/or their doctors are deemed to be deficient.
There was and probably still is a concept for breast cancer that suggested that group therapy helped women with breast cancer to cope and live longer. This concept became quite popular with the 1990 publication of a book called Love Medicine and Miracles by Dr Bernie Siegel. Those concepts were subjected to considerable scientific study and I had the privilege to interview a group of women with stage 4 metastatic breast cancer who had offered to be in a clinical trial to test this. It was the most difficult interview I’ve ever done.
The women all knew they were going to die soon and all of them said how much they hated Dr Seigel. They said that they knew they were dying and that no amount of group therapy, imagining that their cancer cells were being destroyed by their thoughts, relaxation exercises or meditation was going to change that. And, while they did not want to die, they felt that theories like those of Siegel suggested that if they did not get better it was because they did not work hard enough at the exercises.
Not only did they have terminal cancer but they were made to feel that not getting better was their fault.
The American Cancer Society states “the available scientific evidence does not support the idea that support groups or other forms of mental health therapy can by themselves help people with cancer live longer.” It is cruel to suggest otherwise.
Similarly, when we hold up as achievable what 15 or 20% of those diagnosed with schizophrenia can attain as a goal for everyone, we do a disservice. Our goal for recovery should be for each person to be able to get the full range of treatment available so that they can achieve as much as they themselves are able to achieve.