The SP Care Project reviews “Surviving Schizophrenia” 5th Edition by E Fuller Torey MD

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HOPE on the Other Side Episode 26 Program Notes:

Welcome to Today’s episode of HOPE: On the Other Side of the Door, a podcast aimed to help empower the mother, father, sibling, family member or formal caregiver of a person who is living with a diagnosis of Schizophrenia spectrum conditions.  This includes folks who do not have a formal diagnosis or those who do not identify as having this condition, but who live with out of the ordinary experiences such as hearing voices.

The book for today is entitled “Surviving Schizophrenia” and it was first published in 1983 while I was in medical school and a bit before my psychiatric residency training.  It has been highly recommended by the staff psychiatrists and the team social workers.

It is with a certain degree of humility that I present my review of this book, and recognize that we are all in this together.  The physician psychiatrist and the family or caregivers along with the identified patient himself or herself operate best when a therapeutic alliance is formed & created.   We  want move toward that vision of the Schizophrenia Care Project which is a balanced, healthful, meaningful and respectful lives for all involved.

There are a few versions of the book with the same title, but with different subtitles:  “A manual for Families, patients, and providers,” and “A Family Manual.”  The much larger 5th edition with the first subtitle addresses patient concerns.  The “Family manual” version was criticized for not addressing folks diagnosed with schizophrenia, but the book was not primarily intended for that audience.  There are other patient education materials out there.   I will talk about the larger edition.

The first four chapters are about the definition and the description of the schizophrenia spectrum conditions.  The Second section is Chapters 5 and 6 which are about research and theories.  The third section formed by Chapters 7, 8 and 9  is focused on treatment.  The Fourth section,Chapters 10, 11, and 12, is about problems, questions and what the family or caregivers can do to help the situation.  Finally,  in the Fifth section, Dr. Torrey ends with chapters 13, 14 and 15 which address public policy and advocacy issues.

The First Section on the parts of schizophrenia that one can most easily see, that it the speech patterns and oddities, the behavior patterns and unexpected acts, the changes in emotions and body movements.  As in the pdf paper that I make available at the www.DrKenCampos.com website, Dr Torrey describes the official diagnosis of schizophrenia.  For both of us the formal diagnosis is based upon history, observations of behaviors and speech as it reveals thought form and thought content, along with some screening blood tests and medical tests to rule out other known causes of those changes in thought and speech we call psychosis.  As I briefly cover in my pdf report, Dr Torrey goes into more detail on other causes of psychosis.  Interestingly there is one section on “culturally sanctioned psychotic behavior.”  This is of course going to the use of that heavily loaded and stigmatized word, “psychosis.”  Basically, it is beliefs that are very strongly help by the person, pathologically called delusions and experiences in any of the five senses that others do not experience, called in medicine “hallucinations.” But in certain circumstances, these are “normative” or acceptable.  Two examples are fundamentalist religious experiences, such as in a Pentecostal congregation when one experiences another entity entering the body, “the holy Ghost.”  The second one Dr Torrey does not mention, and that is shamanic trance and shamanic experiences.

The second section of the book looks at research.  The genetic connection is discussed as well as that most prominent chemical theory.  The dopamine hypothesis is the major medical explanation of schizophrenia, and all the anti-psychotic medications act on the dopamine system in the brain.  Other neurotransmitters and chemicals that modify brain activity are mentioned.  For about 100 years it has been know that there are large scale anatomical changes associated with schizophrenia.  There appears to be some cell loss.  The variation between the test subjects and controls is wide and this is not a way to make the diagnosis. Poor function in thinking and psychological tests are notable.  The book mentions anosognosia, which is covered in a much earlier podcast in this HOPE series.  Finally he mentions immune system and inflammatory changes along with EEG, electroencephelagram changes, in things like speed at which nerve signals travel in the sensory nerves.  Dr Torrey surveys a set of other theories about the causes.  So with humility, i tell the listening audience that in a specific individual person showing the unusual speech and behavior, the oddities of thought we cannot easily tell which of these theories applies to him or her.

The third section on treatment focuses largely on the North American experience, as does most all the book.  Hospitalization and medication are the mainstays. Next outpatient and managed care models are addressed.  The CBT or Cognitive Behavioral Therapy the book addresses has in the last 10 years since the fifth edition emerged as a very useful psychological therapy to add on to the medication management recommendations.   Next there is an extensive and useful review of various anti-psychotic medications, those medications which block the nervous system receptors of the neurotransmitter Dopamine.  Nerves are like long telephone trans-Atlantic cables in the body which carry electro-chemical nerve signals.  However, between each nerve cell and the next there is a gap.  The cells do not connect.  There are collections of various chemicals which are released when the signal gets to the end of the nerve.  These chemicals travel across the gap to the next nerve cell down the line.  Thus there are receptor molecules at the end of the nerve to get the chemical signal and start the electrical signal along the body of the nerve.  Lastly in this section the book looks at rehabilitation efforts.  Rather that the recommendation for asylum, except in severe cases, it is my opinion that intensive outpatient management in home-like settings or at home with peer support visits is the wave of the future for long term management.  There are those who may have a very light or very mild form of schizophrenia, too.  Those folks are like a person with Diabetes who can get by with managing his diet alone and who does not need insulin injections.

The Fourth Section is about starts with a host of interesting real life situations some of which are talked about in prior podcast interviews.  These include things like alcohol and street drugs, notably dual diagnosis is a huge issue in America.  That phrase “dual diagnosis” generally refers to a person with both a mental illness diagnosis and some aspect of substance use, abuse or frank dependence.  Other topics include sex, pregnancy and AIDS along with victimization.  Dr Torrey’s opinions on medication non-compliance are in line with the most recently mainstream and conservative view that daily anti-psychotic medication use is the primary answer to the best management of those living with schizophrenia. Other tough issues are addressed in the book, too.  The book recommends community groups for education and support. Indeed there are also online groups available as well.  Family systems are important to note as well.  There may be a host of reactions in the family  members when another family member is living with schizophrenia.  NAMI is recommended, that is the National Alliance on Mental Illness.  Significant questions are addressed in the book at this point regarding personality, religion, responsibility, and genetic counseling.

Then in the fifth and final section the North American and particularly the United States views on schizophrenia are addressed.  The political issues are major in this condition. Insurance and payment for services is a significant factor for a set of people with moderate to severe symptoms are often not able to work at a traditional job.  Thus, they would not have the ability to purchase insurance.  The disaster Dr Torrey addresses has to do with the decrease in human attention and guidance that those with schizophrenia get in the USA.   He writes about it in terms of de-institutionalization.  The idea from several decades ago was to provide community based home services and attention.  It is this component which has been largely lacking.  And with peer support specialist and psych techs as part of the overall community based residential management and treatment teams, there is a real chance for a good quality of life in the community.

Dr Torrey focuses and is biased toward a medication management model for treatment.  Indeed, in my own training as a hospital based psychiatrist, the use of medications and hospitalization is still seen as the number one foundation for treatment and acute management.  Medicalized community based services are the next part of treatment.  Thus, Dr Torrey’s book does not emphasize some of the more holistic additions to medication treatment such a peer support specialists and complementary treatments.  However, this book provides an extensive and in-depth review of the current state of modern Western medical and scientific understandings of what we are calling schizophrenia.  The 5th edition’s research section gives an overview of what in the last 10 years has gotten more solidified scientifically.  We are headed toward the idea that there are likely a handful of different causes of the condition or of the observations of the mental changes, the brain changes, and the behavior changes that we are calling schizophrenia.  However, the medications available are definitely helpful in calming symptoms, but do not address cure of that handful of underlying conditions directly.

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Treatment Advocacy centerFounded by e. Fuller Torrey MD