Tag Archives: recovery

Further Reflections on the Misguided Concept of Recovery

By Marvin Ross

Last year, I wrote about what I called the unintended consequences of focusing on recovery in schizophrenia. I’ve also published an e-report called The Emergence of the Recovery Movement by Lembi Buchanan that explores the anti-psychiatry and anti-medication underpinnings of this movement.

In October, the New England Journal of Medicine published three articles by cardiologist Lisa Rosenbaum. The first is called Liberty versus Need — Our Struggle to Care for People with Serious Mental Illness which contains a section on recovery. The other two articles are listed and linked on the right hand side of that page. Toronto psychiatrist, Dr David Gratzer, brought them to my attention and then I discovered that my friends at Mad In America (MIA) detested the articles so, from both sources, I knew they would be good.

Comments by MIA on the article include:

“This is paternalistic rubbish”

“It is no wonder that people are turning against such white, wealthy elites, as exemplified by recent events such as Brexit and Trump’s election, when so many experts such as this (white, wealthy) psychiatrist think they can impose their view about who is right on common people and their families.”

“The arrogance is a notch higher than you might have realized. The author is a cardiologist.”

Dr Rosenbaum mentions that the Recovery movement began partly to combat stigma by pointing out that US policy makers wanted to show that people could get better. She quotes a 2003 report that said “because recovery will be the common, recognized outcome of mental health services, the stigma surrounding mental illnesses will be reduced, reinforcing the hope of recovery for every individual with a mental illness”

She then quotes psychiatrist/historian, Joel Braslow, stating that “What unifies the (recovery) movement is its self-perception as a radical departure from the past.” Consequently the problem with recovery, she says, is that it becomes antagonistic to and a subtle rebuke of psychiatry. Thus, psychiatrists are seen as having created dependency so that their patients will need them forever. To this she says that “psychiatrists are no more responsible for the chronic needs often associated with schizophrenia, for instance, than medical doctors are for those associated with HIV.”

The needs are there because of the disease and not because of the efforts of those treating the sufferers.

If you defer to the patients’ choice, a positive outcome is guaranteed because success is self-determination. Whatever the patient decides is in his or her best interests is a positive outcome even if objectively, it is not. And she cites recovery maven, Patricia Deegan, who wrote “Although the phenomenon (recovery) will not fit neatly into natural scientific paradigms, those of us who have been disabled know that recovery is real because we have lived it” That reasoning, says Rosenbaum, stifles dissent because who can argue with lived experience.

And she cites Oliver Freudenreich, a German-born psychiatrist who now practices at Massachusetts General Hospital. He pointed out to the author that “It’s a very American idea: if you try hard enough, pull yourself up by the bootstraps, you can do it.”

It is that last statement that bothers me the most because many people cannot recover to the point where they have no deficits and need no medications. Anyone who can’t (and they are in the majority to varying degrees) are made to feel like it is there own fault that they are not better.

Most people are familiar with the concepts put forth years ago by people like Dr Bernie Siegal (Love Medicine and Miracles) and Norman Cousins (Anatomy of an Illness) who talk about curing your diseases with imagery, positive thinking, laughter and relaxation.

These ideas were studied in the case of metastatic breast cancer and there was no improved survival at 5 years. The latest Cochrane metaanalysis concluded that “there is a relative lack of data in this field, and the included trials had reporting or methodological weaknesses and were heterogeneous in terms of interventions and outcome measures.”

A number of years ago, I had the opportunity to meet with a number of women who were involved in one such trial on survival. The most difficult article I’ve ever done because I sat with about 10 women all of whom were terminal and about to die. All of the women told me how desperately they wanted to live and how they hated Bernie Siegal and Norman Cousins. Their philosophy, they said, suggests that if we die from cancer, it will be our fault – that we did not work hard enough to think positive thoughts and to will our cancer away. That is not the case at all. Their will to live was not able to stave off the consequences of advanced metastatic cancer.

Nor is it the case with people with schizophrenia or any other serious mental illness who are not able to throw out their pills and return to good health. Many (or most) will continue to need them and will continue to need support to varying degrees. If they cannot achieve what has been arbitrarily defined as recovery, it will have been their fault. It is not! They should be supported in whatever it takes to keep them as well as they can become.

Towards a More Honest Interpretation of Schizophrenia Recovery

Marvin RossBy Marvin Ross

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.