Central East LHIN ACT Conference - Journal of Ethics in Mental

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Ethics in ACT
Ethics in Action
Ethics in Traction
John Maher MA MD FRCPC
Today’s topics:
Our ACT world
Compassion fatigue & moral stress
Ethics in psychiatry
Weaving a value tapestry
A penny for your thoughts
Take one for the team
How are ACT teams different from
other community treatment teams?
community based in-vivo interventions
the ability to provide rapid and intensive responses
long-term and full clinical responsibility for
individuals with serious and persistent mental
illness.
multidisciplinary teams working as teams
low staff: client ratios (often 1: 8)
providing flexible, all inclusive care
often a program of last resort—the alternative is
frequent or permanent hospitalization
“doers not brokers”
better outcomes (Szmukler G, 2003)
Why are ACT teams a hot bed for the
generation of ethical issues?
“Familiarity begets certain liberties”
small staff-client ratios (intimate knowledge of
client’s life story)
intensity of involvement
infiltration into all aspects of client’s life
engagement in activities usually limited to friends
or family
severity of client’s illness (impaired insight and
capacity is common)
ACT teams intervene directly, repeatedly
“Staff are busy trying to prevent
mayhem…the constraints of
confidentiality, voluntariness, and other
moral requirements whose application to
the community treatment context is
unclear often seem to be issues of
bureaucratic nicety.”
(Diamond & Wikler 1985)
When confronted by the chaos of a tense
clinical situation some staff respond with
greater control and paternalism that then
perdures in order to prevent things getting
out of control again.
All of the above leads to more ethical
confrontation and conflicts with and
between personal and team philosophies.
Clients often welcome help with their social
needs (e.g. housing, finances) but ACT
engagement and treatment plans inexorably
foist medical and safety interventions upon
them too.
Even with verbal abuse of ACT staff we still
don’t stop seeing our clients. And we keep
showing up even when repeatedly fired.
(Non-psychotic physical violence, or genuine
threats of violence are, however, appropriate
grounds for discontinuing care.)
“Is treatment that won’t go away ethical?”
(Stovall, 2001)
What makes ACT successful?
(And from whose perspective?)
Objectively the endpoints are clearly good:
– better health,
– better relationships,
– better housing,
– better food,..
– fewer hospitalizations
Subjectively, for some, the means are
clearly bad:
– forced medication adherence,
– threats of hospitalization,
– loss of freedom,
– living in a world where strangers keep telling
you that you have an illness…
Our ACT World
Nice rug
Nice couch
Breathe through your mouth
Last meal
Lying, drug seeking, anger,
rejection, danger
Intruder, psychiatric police
Compassionate advocate
Compassion
What is compassion?
Pity coupled with an urgent desire to
aid or spare someone their suffering
What are the elements of
compassion?
1) Pity: tender or contemptuous
sorrow for one in misery or distress
(note the moral element)
Compassion
2) Empathy: the action of
understanding, being aware of, being
sensitive to, and vicariously
experiencing the feelings, thoughts,
and experience of another of either
the past or present without having
the feelings, thoughts, and
experience fully communicated in an
objectively explicit manner
Compassion
3) Sympathy: the act or capacity for
sharing the painful feelings of another
4) Commiseration: pity expressed
outwardly in exclamations, tears, or words
of comfort
Biology of affect: mirror neurons
Cognition: this could happen to me
Unconscious association: this has
happened or will happen to me
Compassion Fatigue
Compassion Fatigue: the not
inevitable cost of caring…
Emotional exhaustion
Physical exhaustion
Vicarious trauma
Compassion Fatigue
Compassion Fatigue:
May be more likely to occur in
caregivers who have had difficult
childhoods, and/or have ongoing
difficult emotional challenges in their
personal lives
Compassion Fatigue &
Moral Stress
It has been suggested that a
significant contributing factor to
compassion fatigue is moral stress
Moral stress: caused by repeated
exposure to moral challenges or
conflicts in which the path is not
clear, or…
Compassion Fatigue &
Moral Stress
…repeatedly finding oneself in
circumstances in which you are thwarted
in your efforts to do what you believe is
right…”no-win situations”
Uncertainty and frustration engendered by
barriers to good care…
Sound familiar?
Compassion Fatigue &
Moral Stress
ACT staff show compassion for
marginalized, stigmatized,
impoverished, suffering individuals
We constantly fight systems: lack of
money, lack of housing, ignorance,
medical neglect, unemployment,
overt abuse
Others don’t do what we know to be
right and fair for our clients…
Compassion Fatigue &
Moral Stress
And our clients often don’t do what we
know to be good for them…
As intensive case workers in the
community we enter into the lives of our
clients in ways few other caregivers do…
When people we really care about are hurt
we may feel it deeply…
And the usual recurrent injustices of the
world may be harder to shake off…
Compassion Fatigue &
Moral Stress
ACT was founded on the premise of
ensuring patients’ autonomy without
abandoning them in the community…
But this is an unsupportable
contradiction for front-line staff who
are busy “massively controlling their
clients, supposedly to guarantee that
clients control their own lives.”
(Brodwin 2008)
This is an ever present moral
tension…
Compassion Fatigue &
Moral Stress
“Front-line staff find that the same
clinical gestures required, per ACT
guidelines, to prevent hospitalization
(the prime clinical and ethical ideal)
can also decrease clients’
independence, threaten their wellbeing, and humiliate them in public.”
It is a double bind…
Compassion Fatigue &
Moral Stress
So what do we do with moral stress
in order to stave off compassion
fatigue?
1) Emotional awareness skills
2) Recognize early warning signs
(anger, impatience, heightened
sense of injustice, not being able to
let go when you are at home)
Compassion Fatigue &
Moral Stress
3) Stress management techniques
and self-care strategies that promote
optimism, happiness, and positive
attitudes
4) Discuss issues with colleagues
(team meetings that allow this are
really important)
5) Debrief with a supervisor
Compassion Fatigue &
Moral Stress
6) Systems mastery (using connections)
7) Foster effective functional detachment
through recognition that moral conflicts in
life are inevitable, and they leave us with
residual anxiety, guilt, and distress
(“moral residue”)
8) Use moral discourse to mollify or
mediate intense affective distress.
Compassion Fatigue &
Moral Stress
Key idea: Suffering and sadness coexist with joy, discovery, and hope.
Fight the good fight without
resignation, and do not despair, for
what meaning there is in life cannot
be smothered solely by its passing
injustices
Morality vs Ethics
Morality and ethics are tools in the
fight…
Morality: right vs wrong (conscience,
intuition, personal values, emotion)
Ethics: reflection that is based on the
human capacity for reasoning and
gets expressed through formal
systematic theory
Ethics Theories Used in Psychiatry
1) professional ethics (e.g. duty to society
vs duty to patient)
2) virtue ethics (ethics of care):
desirable qualities in an ethical agent
3) Principle-based ethics (autonomy,
beneficence, nonmaleficence,
distributive justice, etc)
Ethics Theories Used in Psychiatry
4) Casuistry: paradigm cases as precedents
(e.g. Tarasoff)
5) Utilitarianism (greatest good for…)
6) Deontological (universally true for all
time)
Ethics Theories Used in Psychiatry
7) Discourse ethics (post-modernist,
feminist):
ethical norms are generated through
discourse within a context in which
all members can express their views
(I believe such discourse inevitably
involves appeal to, or non-explicit
use of, the previous 6 theories)
My Inner Moral World…
What guides your thinking? What drives
your heart?
Playground rules: “That’s not fair!”
Do unto others…
The Rawlsian Veil of Ignorance…
(a technique for weighing distributive justice)
Ethics in Psychiatry
It is argued that no one theory is
adequate for the complexities of
psychiatric practice
Why? Unique vulnerability of mental
health clients, unique power
relationships, unique relationship of
psychiatry to the law and social
institutions
Ethics in Psychiatry
Psychiatry is a socially constructed
enterprise, continually evolving…
Nazi psychiatrists to REBs…
Codes of ethics (e.g. ati diki)
Disease classification (DSM V)
Treatments (analysis, DBS)
Neuroscience (do we have free will?)
What counts as normal? (neurodiversity
movement)
Ethics in Psychiatry
The Goal: “To achieve a balance
between universal human values and
the particularism of different
psychiatrists working in different
societies at different points in
history…”
(Brodwin 2008)
How do we do this?
Moral Discourse
“The Coproduction of Moral Discourse in
U.S. Community Psychiatry”
A two year ethnographic study of ACT
(ethnography: the study and systematic
recording of human cultures)
Paul Brodwin, anthropologist,
University of Wisconsin
Medical Anthropology Quarterly V.22, Issue 2,
2008
Bioethics – A Critique
For 20 years, social scientists have
critiqued formal bioethics. In the real
world, we don’t have rational and
systematic deliberation in response to
moral uncertainty. Reality is messy…
They say ethical issues in medical care are
not addressed by “invoking abstract
principles and values (autonomy, utility,
care,etc.) but rather through local idioms
and reflections on their immediate,
practical activities”
Bioethics – A Critique
“ According to this critique, people’s
moral perspective on medical
treatment emerges from the
concrete details of inequality and
local notions of suffering, not highorder virtues or rules of conduct.”
Bioethics – A Critique
“Emotional experience and local
institutional arrangements drive
many of the social conflicts that later
get formally labeled as bioethics
disputes.”
(italics and underlining are mine)
Bioethics – A Critique
“Ethical discussions by both staff and
patients are thus inseparable from their
immediate life circumstances, social roles,
political interests, and cultural beliefs.”
This critique has intuitive appeal. Bioethics
is an abstract bunch of theoretical stuff
that doesn’t really have primacy in the
real clinical world…
Bioethics – A Critique
This critique lead to the following
categorical distinction and lingo:
“Moral discourse” is the framework
used by ordinary front-line
practitioners as they handle
particular illness episodes
“Ethics” is the codified, reflective
language of elite experts, situated
far from the scene of clinical action
Bioethics – A Critique
If moral discourse and ethics are really two
separate worlds of thought, then what does that
mean for clinical bioethicists who provide moral
advice and adjudicate disputes in hospitals?
“Clinical bioethicists depend on their specialized
theoretical knowledge to legitimize their
professional identity.”
“They promise clarity, rigor, and coherence, even
if (indeed, precisely because) they obscure the
local texture and richness of moral life.“
Bioethics – A Critique
“The social power of clinical
bioethicists – the likelihood that
others will follow their advice –
depends on their cultural authority,
their ability to establish convincing
definitions of fact and value. This is a
tight power/knowledge link…”
Bioethics – A Critique
But “ethical decision making in
health care is a culturally embedded
process, attuned to people’s life
experiences and shifting over time. It
thus cannot possibly conform to the
dictates of prescriptive theory.”
(theory that shows what one ought
to do)
The Conundrum
So bioethicists are useless?
So ethics is remote and irrelevant to
front line workers?
So moral discourse at the front-line
always has analytic primacy and is
useful simply because bioethics is
not?
A Middle Road: Coproduction of
Moral discourse
Brodwin argues that “moral
discourse is coproduced by formal
bioethics, on the one hand, and the
circumstances of everyday clinical
practice, on the other hand.”
What does this mean? It is like a
pentimento…
Coproduction of Moral Discourse
Pentimento: a reappearance in a painting
of a design which has been painted over
The tools at hand to solve clinical
dilemmas were “created in part by prior
ethical decisions made by other actors,
responding to different circumstances and
demands at an earlier historical period.”
The “outcome of prior ethical debates is
woven into the terms and tools used by
today’s clinicians.”
Coproduction of Moral Discourse
“Over time, bioethics decisions
(systematic, explicit, and made by
experts) become sedimented into the
very conditions of work for front-line
practitioners. They help create the
roles that clinicians play, the
guidelines and goals for intervention
with patients, and their moral
perspective on every day work.”
Coproduction of Moral Discourse
In short, ethics matters and moral
discourse matters, and neither can
flourish without the other.
Teeth need something to chew on…
Mental health reform is driven by
front-line conflict and vice versa!
Moral Discourse on ACT Teams
Brodwin’s observations about ACT:
High-order ethics debates (autonomy &
human dignity vs abandonment & the
failure of deinstitutionalization) spurred
the invention of ACT 35 years ago
These debates have been “braided” into
our moral discourse as it continues
through many mediations
Moral Discourse on ACT Teams
“High-order ethical discussions about
right and wrong hover above the site
of clinical action, leaking into the
words people use, constraining
people’s actions without their
knowing it, and sometimes entering
their most personal anxiety about
the obligatory and the forbidden.”
Moral Discourse in ACT Culture
When you started your ACT job you entered an
established culture with:
rules (e.g. confidentiality, consent)
policies (college, hospital, legal)
duties (e.g. ORB monitoring)
particular interpersonal norms (e.g.
assertiveness, coercion, respect)
expectations of mutual support (teamwork,
safety)
black humour
mandates (TAP, provincial standards)
values (e.g. recovery, rehab)
consumer rights and movement as a backdrop
mental health reform in the wings
Moral Discourse on ACT Teams
We navigate culturally complex waters…
Brodwin highlights that there are “ethical
black boxes” behind the scenes that
establish limits of allowable conduct, and
these are used by front-line staff who
neither know the history nor internal
complexity of the box, but simply use it
everyday for routine tasks and decisions.
The boxes serve their essential purpose,
but can also “precondition certain
tensions, blockages, and frustrations in
everyday work”
Moral Discourse on ACT Teams
The iterative process of moral
discourse and its emergent trail of
black boxes has shaped:
Regulatory paperwork and forms
The mandates and micro-politics of
staff-client interactions
The idealized self-image of front-line
ACT staff
Moral Discourse on ACT Teams
Mostly, the black boxes are under the
discussion table sending out their ethics
beacon signals. However, when a
substantial moral conflict arises, a black
box is sometimes set right on the
discussion table. When this happens, I
suggest the more fitting image may be of
Russian nesting dolls…
The craftsmanship, history, and layers of
ethics can be appreciated if explored…And
you can stop at the level needed to
restore balance to the clinical culture and
get on with the job
A caveat about how teams work…
Teams are a disparate mélange of
acculturated professionals with differing
world views, different clinical paradigms,
and conflicting values, duties, or operating
principles.
Obvious competing forces: personal
morality, laws, culture, professional
college guidelines, hospital rules, team
views, limits/goals of the service mandate,
role of client wishes, beliefs about efficacy
and success.
Given this, there are many ways that team
structure and function can hinder
treatment goals and outcomes, and more
to the point, smother effective moral
discourse.
Potential Flaws in Team
Functioning and Operations
1. Increased risk taking: greater willingness to
accept risk as a team member as compared to
individual decision making.
2. Diffusion of responsibility: unclear
accountability to a team that is supposed to
serve as as a support / resource / supervisory
system. Abrogation of duty amidst a busy flow.
(1-7 are based on Szeczeskiewicz 2005)
3. Mutual confirmation bias: shared view
on manufacturing desired outcomes.
4. Belief in the inherent morality of group
members: presumptions of goodness and
craft knowledge may abound.
5. Mutual protection from criticism: trauma
bonding, alliances, and sub-groupings
leading to “us against them” mentalities or
justifications.
6. Conformity: the pressure to conform to
group norms or get out of the way; being
punished for questioning; scapegoating as
an inevitable group phenomenon;
reenactment of family of origin dynamics;
repetition compulsions; “Go along to get
along”.
7. Restricted response repertoire: this is a
closed shop that always does it this way…
8. Illusion of invulnerability: group strength
phenomenon…
9. Role diffusion: “Staff members serve
multiple roles – job coach, money
manager, and medication assistant, as
well as counselor. This necessary
flexibility produces a role diffusion that can
lead to a risky boundary diffusion”
(Stovall 2001)
10. Allowing less skilled clinicians to get by
with splinter skills: some team members
function without a rich or encompassing
paradigm and don’t know what they don’t
know (e.g. ignorance of basic interviewing
skills, limited understanding of boundaries.
Intolerance of affect: silencing clients with
cheeriness, encouragement, or a practical
task focus in ways that are both distancing
and emotionally alienating).
11. Sheltering and compensation for
colleagues who are under skilled: this is an
extension of the ACT protective posture to its
own structures.
Moral discourse in ACTion
Let’s have some moral
discourse…
Three topics:
1) Weaving a value tapestry
2) A penny for your thoughts
3) Take one for the team
1) Weaving a Value Tapestry
A shared piece of work…
Would you do any of the following
jobs at this stage of your life:
Sell pop and popcorn in the stands at
BC Lions football games?
Work as a cook at Kentucky Fried
Chicken?
Weaving a Value Tapestry
Be a security guard at a movie
theatre?
Clean hot tubs at an after-ski
facility?
Be a car jockey at a rental agency?
Be a camp counselor?
Be a high school supply teacher?
Teach courses at a university?
Weaving a Value Tapestry
If you said “no” to any of the job
possibilities, would you change your
mind if you had to do it to feed your
family?
Would you do it if you thought it was
a socially responsible and good thing
to take part in our collective creation
of a civil society?
Weaving a Value Tapestry
Are some jobs only suitable for
slaves, lower classes, immigrants,
high school drop-outs, trailer park
boys, teenagers, women, or mentally
ill people?
What social biases and prejudice
have permeated our collective
unconscious? Let’s make covert
barriers overt…
Weaving a Value Tapestry
Is every ACT client capable of
working?
Too sick all the time? No energy? No
motivation?
Is my bias an unconsciously
insinuated impediment that supports
a client’s sense of entitlement or
helplessness?
Weaving a Value Tapestry
Yes, every single ACT client
can work, under the right
conditions
Assisted, supported, modified,
adapted, part-time, seasonal,
volunteer…
Weaving a Value Tapestry
My value: We must not forget that
our society is like a mobile whose
fragile equilibrium and success
depends on a shared commitment to
all vocational roles. No work is below
me or above me if it needs doing for
our shared good. All work is noble
and enobling.
1) A Penny for your Thoughts:
Paying patients cash to take meds
Fostering medication compliance
in patients with serious and
persistent mental illness who
lack insight and who are
repeatedly non-compliant
A Penny for your Thoughts: Our
Social Backdrop
Financial incentive programs have helped
with tuberculosis treatment compliance;
encouraged dental care, weight loss,
cocaine abstinence, births, stopping
pregnant moms from smoking and
drinking, getting parents to take kids to
the doctor…
In short, many social goods are prompted
and accomplished through the use of
direct financial incentives…
A Penny for your Thoughts
70 % of psychiatric patients do not
take their meds as prescribed
By introducing payment into the
equation, will voluntary adherence
falter or disappear?
Does paying for adherence
undermine the basis for informed
consent?
A Penny for your Thoughts
In a survey, 50 of 75 Managers of
ACT Teams in Britain said paying
cash for compliance is unethical
We already use strong incentives and
coercion (reward or punishment)
with ACT clients (coffee, outings,
housing, admissions). Why is cash
different?
A Penny for your Thoughts
British ACT managers feared money
was too coercive with poor clients
and would affect the therapeutic
relationship (make clients suspicious)
In 2003 a British ACT team offered
to pay 5 clients $10-$30 for each
injection of medication
4 accepted…
A Penny for your Thoughts
Outcome:
better compliance
more likely to stay in independent
accommodation
fewer problems with neighbours and
the police
no admissions
Just coincidence? Attributable to
other supportive ACT elements?
A Penny for your Thoughts
So spending a bit may save a lot of
money for the system…
How to select…
Just those who lack insight?
High risk for non-compliance?
History of violence?
Heaviest users of services?
All other interventions, persuasions,
and coercive techniques have failed?
A Penny for your Thoughts
Behavioural therapies are based on
explicit and consistent rewards…
Is paying cash really immoral
exploitation of the poor and
vulnerable, or just a more positive
variation on what we do already?
A Penny for your Thoughts
Bonus question:
Should we pay patients with drug
induced metabolic syndrome to
exercise?
3) Take One for the Team
The scenario:
25 years old with schizophrenia
Followed by ACT Team
History of noncompliance
Decompensates slowly
No history of violence or self-harm
Lacks insight; otherwise well on IM
Not capable for treatment
SDM authorizes IM
Client repeatedly refuses IM
Repeated ACT-client confrontation every two
weeks over taking the IM
Take One for the Team
The Health Care Consent Act
(Ontario) authorizes valid substitute
consent for treatment for an
incapable client
Does it also authorize the means
necessary to deliver the treatment?
Can we override the client’s refusal
of the IM in the community when
there is no threat to life or limb, and
no likelihood of self-harm or harm to
others?
Take One for the Team
Yes!
A 2008 case settled before the
Ontario Superior Court has spelled
this out clearly for the first time and
it has not been appealed…
How do you do this in reality?
Can you maintain the relationship?
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