Lectures Severe Mental Illness in Urban Context
Video lecture 1: Expert-by-experience Jeroen Zwaals
First online lecture was an interview with expert by experience (on psychosis). He experienced
psychosis as if there is no difference between the outside world and his inside world in his head
anymore. The main point that was made was that science can sometimes “make reality smaller than
it is”, wanting to measure things requires them to be more simple, but actually all people have their
own experiences and things that works for them. He also experienced that people didn’t ask him
about his trauma where he feels that is the core of his problem, they just gave him a diagnosis of
bipolar, that didn’t really help him. Developing meaning in the process of recovery is really important.
Interactive lecture 1: Diagnosis in context (Femke Truijens)
Severe Mental Illness (SMI):
Definition by National Institute of Mental Health (NIMH) (3 D’s):
- A major diagnosis of non-organic psychosis or personality disorder (not due to brain injury or
dementia)
- Duration of at least 2 years: has undergone psychiatric treatment more intensive than
outpatient care more than once in a lifetime & has experienced an episode of continuous,
supportive residential care, other than hospitalization, for a period long enough to have
significantly disrupted the normal living situation.
- At least two / three of the five categories of functional disabilities:
o Is unemployed, is employed in a sheltered setting or supportive work situation, or
has markedly limited skills and a poor work history
o Requires public financial assistance from out-of-hospital maintenance and may be
unable to procure such assistance without help
o Has difficulty in establishing or maintaining a personal social support system
o Requires help in basic living skills such as hygiene, food preparation, or money
management
o Exhibits inappropriate social behavior which results in intervention by the mental
and/or judicial system
The SIDDD dimensions of a definition of severe mental illness (Slade et al., 1997):
1
,It’s more complex than just diagnosis. But it it’s not necessary that people with mental illness live in
bad hygiene for example. The problem is that severe mental illness is a complex situation, lot of
factors, also prone to (stigmatized) image that people might have of people ‘of the grid’. We see
people that are dubbed ‘difficult to treat’ (does not mean that people are difficult). Treatment
resistant means that people don’t respond to any of the treatments, kind of puts the responsibility in
the patient.
“Difficult to treat patients” (non-understood behavior, professional escalation: so many institutions
intertwined can lead to hopelessness) Koekoek et al. 2009:
- (Urban) contextual factors: poverty (debt), low social-economic status, unemployment,
homelessness, criminal / inappropriate behavior.
- Dual diagnosis: in combination with substance abuse, childhood trauma / abuse /
attachment issues, depressive or anxiety symptoms.
Perspective on SMI:
“For much of the 20th century, severe mental illness was considered chronic and deteriorating,
requiring institutional tertiary care or high-intensity secondary car. This approach changed in the
1960s with the advent of anti-psychotic drugs and subsequent deinstitutionalization, which gave
new hope to patients with severe mental illness who were discharged into the community” (Whitley
et al., 2015).
Also changes the responsibility to patients themselves who could be cured (taking medication and
working for it), instead of just doctors responsibility.
From 60’s onward: from care (kind of pessimistic, locking people up) to cure paradigm.
Drug-based treatment disease model (“mental illness”): term implies medical discourse of cure
Disease model:
2
, - Nomothetic approach (understanding world from universal laws): explanation of symptoms
by underlying diseases. For example when person X has disease Y, the disease causes
symptoms x, y and z (disease states causes symptoms we can observe).
Also causal. If you want to get rid of symptoms you look into the cause (for example removing
tumor). Also there in mental illness, assume that symptoms are caused by one underlying disease
state (for example major depressive disorder). Problem is that the symptoms are sign of something
deeper.
Cure-paradigm in psychiatry:
Ontology (theory of being, way we think reality is organized): causal disease model (actually have a
real foundation, not made up or assumed, cause symptoms we can observe)
- Symptoms: observable signs of the underlying cause
- Treatment goal: eliminate cause
- Treatment outcome monitoring: observe reduction of symptoms as signs of elimination of
cause.
- End result: no more symptoms = no more disease.
Cancer example: brain tumor, symptoms, operate and remove tumor. Will not monitor symptoms
anymore, the cause was taken away. We can be sure because we took out the tumor, very concrete.
This is were psychiatry and the medical discourse differ, we can only observe if the symptoms are
gone. We can not touch a disorder or mental illness.
Second step (next to ontology): how we can know about it, evidence treatment
Epistemology (theory of knowledge): describe symptoms as clearly as possible (why is difficult). We
do want to diagnose, classify with the clear goal of changing it.
- Cookbook psychiatry (DSM with ”list of ingredients and recipe”). You can cook an apple pie
without raisins, but not without apples. You can’t have depression without negative mood,
but you can without sleeplessness. You can diagnose people without all of the symptoms (so
without negative mood for example), that is why DSM is often criticized.
- Comorbidity as isolated diagnoses (consequence of cookbook style describing diseases).
Example cancer: brain & lung cancer, two types of cancer, two isolated places that cause
symptoms. Disease state of depression, disease state of anxiety for example, assume they all
have separate causes.
Evidence-based treatments: predictable illness & treatment course.
- Efficiency & dose-response
- Manualization
- Objective evidence = context-independent
Summary: cure as the “symptom reduction model” (so the disease model)
3
, Evidence-based treatment focused on symptom reduction
- Hyperfocus on diagnosis in diagnosis-disablity-duration
- Assumption of malleability of symptoms: linear, causal, predictable
Goal of the course: what does it mean that we use the disease model (and DSM) and evaluate.
Pitfalls of symptom-based diagnosis (e.g. DSM):
- High comorbidity rates
- Many disorders occur dimensionally rather than categorically ( arbitrary cut-offs)
- Diagnostic categories are highly heterogeneous (e.g. 256 ways to diagnose BPD based on 5
out of 9 criteria).
- Limited predictive validity of diagnoses regarding treatment process and outcome
- The category Not Otherwise Specified (NOS) often yields large numbers but lacks clarity
Heavily critiqued in the field: “Saving normal”:
- Weak scientific status of DSM: classification is not the same as ontology & reliability is a
problem (old wine in new barrels)
- Diagnostic inflation: overdiagnosis / overtreatment of mild problems & undertreatment of
complex “difficult” problems (people with complex problems often become dependent on
the institutions, which leads to hopelessness, so care paradigm excludes more complex
people, back where they started).
- SMI = messy, complex, multidimensional, contextual (don’t limit your view to DSM!) see
article Vanheule et al. (2019) for this week.
So in the end, the people it was meant for are excluded in the end because of the model, they are
too complex.
Alternatives?
1. Research Domain Criteria (RDoC) & transdiagnostic dimensions (network theory)
Observed problems in symptom-based diagnosis: heterogeneity, comorbidity, research eligibility
(comorbid excluded from research), arbitrary cut-offs (‘healthy’ vs. ‘disorder’) RDoC aims for the
opposite: dimensional, multi-level, developmental.
4
Video lecture 1: Expert-by-experience Jeroen Zwaals
First online lecture was an interview with expert by experience (on psychosis). He experienced
psychosis as if there is no difference between the outside world and his inside world in his head
anymore. The main point that was made was that science can sometimes “make reality smaller than
it is”, wanting to measure things requires them to be more simple, but actually all people have their
own experiences and things that works for them. He also experienced that people didn’t ask him
about his trauma where he feels that is the core of his problem, they just gave him a diagnosis of
bipolar, that didn’t really help him. Developing meaning in the process of recovery is really important.
Interactive lecture 1: Diagnosis in context (Femke Truijens)
Severe Mental Illness (SMI):
Definition by National Institute of Mental Health (NIMH) (3 D’s):
- A major diagnosis of non-organic psychosis or personality disorder (not due to brain injury or
dementia)
- Duration of at least 2 years: has undergone psychiatric treatment more intensive than
outpatient care more than once in a lifetime & has experienced an episode of continuous,
supportive residential care, other than hospitalization, for a period long enough to have
significantly disrupted the normal living situation.
- At least two / three of the five categories of functional disabilities:
o Is unemployed, is employed in a sheltered setting or supportive work situation, or
has markedly limited skills and a poor work history
o Requires public financial assistance from out-of-hospital maintenance and may be
unable to procure such assistance without help
o Has difficulty in establishing or maintaining a personal social support system
o Requires help in basic living skills such as hygiene, food preparation, or money
management
o Exhibits inappropriate social behavior which results in intervention by the mental
and/or judicial system
The SIDDD dimensions of a definition of severe mental illness (Slade et al., 1997):
1
,It’s more complex than just diagnosis. But it it’s not necessary that people with mental illness live in
bad hygiene for example. The problem is that severe mental illness is a complex situation, lot of
factors, also prone to (stigmatized) image that people might have of people ‘of the grid’. We see
people that are dubbed ‘difficult to treat’ (does not mean that people are difficult). Treatment
resistant means that people don’t respond to any of the treatments, kind of puts the responsibility in
the patient.
“Difficult to treat patients” (non-understood behavior, professional escalation: so many institutions
intertwined can lead to hopelessness) Koekoek et al. 2009:
- (Urban) contextual factors: poverty (debt), low social-economic status, unemployment,
homelessness, criminal / inappropriate behavior.
- Dual diagnosis: in combination with substance abuse, childhood trauma / abuse /
attachment issues, depressive or anxiety symptoms.
Perspective on SMI:
“For much of the 20th century, severe mental illness was considered chronic and deteriorating,
requiring institutional tertiary care or high-intensity secondary car. This approach changed in the
1960s with the advent of anti-psychotic drugs and subsequent deinstitutionalization, which gave
new hope to patients with severe mental illness who were discharged into the community” (Whitley
et al., 2015).
Also changes the responsibility to patients themselves who could be cured (taking medication and
working for it), instead of just doctors responsibility.
From 60’s onward: from care (kind of pessimistic, locking people up) to cure paradigm.
Drug-based treatment disease model (“mental illness”): term implies medical discourse of cure
Disease model:
2
, - Nomothetic approach (understanding world from universal laws): explanation of symptoms
by underlying diseases. For example when person X has disease Y, the disease causes
symptoms x, y and z (disease states causes symptoms we can observe).
Also causal. If you want to get rid of symptoms you look into the cause (for example removing
tumor). Also there in mental illness, assume that symptoms are caused by one underlying disease
state (for example major depressive disorder). Problem is that the symptoms are sign of something
deeper.
Cure-paradigm in psychiatry:
Ontology (theory of being, way we think reality is organized): causal disease model (actually have a
real foundation, not made up or assumed, cause symptoms we can observe)
- Symptoms: observable signs of the underlying cause
- Treatment goal: eliminate cause
- Treatment outcome monitoring: observe reduction of symptoms as signs of elimination of
cause.
- End result: no more symptoms = no more disease.
Cancer example: brain tumor, symptoms, operate and remove tumor. Will not monitor symptoms
anymore, the cause was taken away. We can be sure because we took out the tumor, very concrete.
This is were psychiatry and the medical discourse differ, we can only observe if the symptoms are
gone. We can not touch a disorder or mental illness.
Second step (next to ontology): how we can know about it, evidence treatment
Epistemology (theory of knowledge): describe symptoms as clearly as possible (why is difficult). We
do want to diagnose, classify with the clear goal of changing it.
- Cookbook psychiatry (DSM with ”list of ingredients and recipe”). You can cook an apple pie
without raisins, but not without apples. You can’t have depression without negative mood,
but you can without sleeplessness. You can diagnose people without all of the symptoms (so
without negative mood for example), that is why DSM is often criticized.
- Comorbidity as isolated diagnoses (consequence of cookbook style describing diseases).
Example cancer: brain & lung cancer, two types of cancer, two isolated places that cause
symptoms. Disease state of depression, disease state of anxiety for example, assume they all
have separate causes.
Evidence-based treatments: predictable illness & treatment course.
- Efficiency & dose-response
- Manualization
- Objective evidence = context-independent
Summary: cure as the “symptom reduction model” (so the disease model)
3
, Evidence-based treatment focused on symptom reduction
- Hyperfocus on diagnosis in diagnosis-disablity-duration
- Assumption of malleability of symptoms: linear, causal, predictable
Goal of the course: what does it mean that we use the disease model (and DSM) and evaluate.
Pitfalls of symptom-based diagnosis (e.g. DSM):
- High comorbidity rates
- Many disorders occur dimensionally rather than categorically ( arbitrary cut-offs)
- Diagnostic categories are highly heterogeneous (e.g. 256 ways to diagnose BPD based on 5
out of 9 criteria).
- Limited predictive validity of diagnoses regarding treatment process and outcome
- The category Not Otherwise Specified (NOS) often yields large numbers but lacks clarity
Heavily critiqued in the field: “Saving normal”:
- Weak scientific status of DSM: classification is not the same as ontology & reliability is a
problem (old wine in new barrels)
- Diagnostic inflation: overdiagnosis / overtreatment of mild problems & undertreatment of
complex “difficult” problems (people with complex problems often become dependent on
the institutions, which leads to hopelessness, so care paradigm excludes more complex
people, back where they started).
- SMI = messy, complex, multidimensional, contextual (don’t limit your view to DSM!) see
article Vanheule et al. (2019) for this week.
So in the end, the people it was meant for are excluded in the end because of the model, they are
too complex.
Alternatives?
1. Research Domain Criteria (RDoC) & transdiagnostic dimensions (network theory)
Observed problems in symptom-based diagnosis: heterogeneity, comorbidity, research eligibility
(comorbid excluded from research), arbitrary cut-offs (‘healthy’ vs. ‘disorder’) RDoC aims for the
opposite: dimensional, multi-level, developmental.
4
