Excavations


... nothing is more essential to public interest than the preservation of public liberty.

- David Hume



Sunday, April 4, 2021

Two Accounts of Schizophrenia, plus thoughts on assisted dying for the mentally ill

Elyn Saks’ remarkable testament, The Center Cannot Hold: My Journey Through Madness (2008), is a well-written account by a woman, who, despite being twice diagnosed with schizophrenia (once with schizo-affective disorder), was at the top of her class at Vanderbilt, and (not without extensive hospitalization) a successful student at Oxford and Yale Law School.  She eventually became a tenured professor at the University of Southern California, whereupon she outed herself with this best seller.  

The work is a worthy read, but, for all her brilliance, Saks is a slow learner. She battles against doctors for well over 15 years, refusing to take medications – or stay with them, partly out of stubbornness in character, out of family outlook, or as a result of her high school experiences at a Miami drug rehab center which she was forced to attend (in a clear example of parent overkill).  For the longest time she lacked insight into her mental illness, preferring almost daily psychoanalytic sessions – especially with Mrs. Jones at Oxford - where there were no limits to her psychotic ravings.  She was, as some would say, “med non-compliant” – and in this respect her story is one of a very many.

It is ironic that at the end she feels like she’s doing the right thing by going on Clozapine (considered by some to be a miracle drug), which means tying herself down for bloodwork every four weeks to keep the White Blood Cells in check.  Clozapine also leads to diabetes and contributes to weight gain, but it can also be countered that all medications have consequences, some more onerous than others.  She finally agrees that medication should go together with talk therapy but appears to work against her conclusion by choosing to consult with both a psychoanalyst and a psychopharmacologist – instead of the psychiatrist whom she had been seeing for 13 years.

The book’s value lies her discussion of what can happen to anyone – not just PhD’s-to-be – without and (in her case) within the mental health system: stigma, forcible restraint, a number of incompetent professionals, you name it.  However, it is exhausting to read, because Saks is so adamant about her right to refuse medication (she studied Law and Mental Health at Yale) that she sucks up all the energy of her loyal and loving friends to keep her going. 

Another issue with the book is the title.  Saks did not come up with it by herself and acknowledges her debt to her publisher.  One wonders if she was aware of  the line from Yeat’s great poem.  If so, she should have considered something different, as her title is strikingly unoriginal.  Finally, informed readers are left with a lingering doubt as to whether Saks is truly suffering from schizophrenia, or is it schizo-affective disorder? The effects of schizophrenia can be so debilitating that the disease leaves you with little to no motivation, the one thing Saks suffers from least when well.

Susan Inman’s After Her Brain Broke: Helping My Daughter Recover Her Sanity (2010) is about daughter Molly’s schizo-affective disorder, and whose cognitive abilities as a result of her illness are considerably lower than that of Elyn Saks. Molly thinks – or thought - of herself as suffering from schizophrenia because the term schizo-affective was considered at first too complicated for her to comprehend.  

This book begins with a big – and important – warning to all families: Molly’s issues appeared when she was about 15 years old, at which time the family obtained a private therapist, who poisoned the daughter’s relationship with the rest of the family, when she declared them “dysfunctional”.  She also depicted psychiatrists as prone to playing “mind-games”. This so-called therapy went on for three years and at great expense and probably could have been avoided by a more hands-on approach to her treatment.

The story of trying to cope with Molly’s problems (for example her two-year psychosis) must have been extremely difficult for Susan Inman and her family, and her account – as with Saks’ - is littered with instance of incompetence and gaping holes within the system.  However, the narrative is hard to follow because it is – or appears to be – written in the present tense.  As well, the penchant for acronyms disengages the reader’s imagination.  The frequent references to different medications might throw the novice but drives home her point that mental illness, as with a broken bone, is a medical problem.   

In short, the book is best regarded as a manual for those who have yet to go through the system, or as a guidepost for those who are experiencing mental illness in their family and are looking for help.  It is also situated mostly in Vancouver, and as such provides a valued local flavour, for example, the section on Riverview Hospital. As with Saks, Inman’s account is a success story: Molly is eventually stabilized, speaks publicly about her illness, attends postsecondary education, and finds a partner.

Both Saks’ and Inman’s writings are predominated by accounts of “how-not-to”.  In a different vein, the Trudeau government's invocation of closure in the House of Commons debate on the question of whether to extend Medical Assistance in Dying (MAiD) to the mentally ill is a clear example of how not to govern.[1] The Liberals’ case is that illness must be considered ‘grievous and irremediable’ and be the main underlying condition. If the mentally ill with other underlying conditions have the right to MAiD, then the mentally ill without any other health conditions should have an equal right to end their lives on their own terms, or so the argument goes.  

In my view, closure on the debate was unethical.  And MAiD for the mentally ill is equally unethical. This all screams, sadly, of the Eugenics movement and its imitators.  Looked at another way: the Canadian government is putting the death cart before the horse. It thinks it is treating people equitably by giving them the right to die while not addressing the primary problems of the vast numbers of the inconveniently ill - such as affordable housing and decent care, in many cases.

In this Brave New World will those patients who have doctors continue to be mindful of trying all treatments?  What about older medications?  New medications are always on the way.  What about different doctors? Saks and Inman can both testify not all professionals are the same.  What about time?  Experience shows, for example, that even people with schizophrenia can improve with age.  No one can rectify MAiD after the fact.  

Proponents argue that it will amount to one or possibly two percent of all MAiD cases annually as happens today in the Netherlands and Belgium.[2]  Even so these are still people, perhaps numbering in the dozens per year, feeling alone with their thoughts.  But the precedent has been set. Suicide is now considered legitimate in the eyes of the mentally ill, who, whether psychotic, delusional, hallucinating, or despairing at no other choice, will have less cause to seek help from a wickedly underfunded system. MAiD will only exacerbate the culture of neglect so characteristic of this already ostracized population.  Get me away, please, from our existential legislators and purveyors of death.  There’s enough of it going around.

 

 

 

 

 



[1] See John Maher, ”The mentally ill need help, not assisted dying.” The Globe and Mail (Friday March 19, 2021), p. A13.

[2] Listen to CBC’s “Sunday Magazine” with Piya Chattopadhyay (21 March 2021).  For further statistics and a more nuanced argument in support of my position, see The Centre for Addiction and Mental Health (CAMH): Policy Advice on Medical Assistance in Dying and Mental Illness (October 2017). 

No comments:

Post a Comment