Transcript Slide 1

Daniel L. Ambrosini, LLB/BCL, MSc, PhD
Postdoctoral Research Fellow
Harvard Law School, Program on the Legal Profession
6th JEMH Conference on Ethics in Mental Health
Peterborough, Ontario
November 29, 2012

Growing demand for advance directives in Canadian mental health
 Kirby Report (2004), Health Canada Glossary Project (2006); Mental Health
Commission of Canada, Toward Recovery Report (2009); Canadian Hospice
Palliative Care Association (2010)

Ethical debates (Ulysses contracts; self-binding problem; precommitment)

Legislative disparity across Canadian jurisdictions (i.e. type of
document; duty to consult; duty to inquire; override principle; good faith
clauses)

Common-law jurisprudence on autonomy and/or advance directives
 Canada: Malette v. Shulman, [1990] O.J. No 450; Fleming v. Reid, [1991]
O.J. No 1083; Starson v. Swayze, [2003] 1 S.C.R. 722.
 US: Cruzan v. Director, Missouri Department of Health, 497 U.S. 261 (1990);
Hargrave v. Vermont, F.3d 27 (2nd Circuit 2003).
Are individuals with certain types of mental disorders
more or less likely to use different forms of advance
directives, and how is this related to notions of
autonomy, empowerment, and recovery?
What types of instructions do individuals with mental
illness include a PAD?
TERM
DESCRIPTION
TERM
Advance agreement
Term used by the English Mental Health Act Legislation
Committee to describe a plan of care between patient
and treatment provider.
Odysseus contract, pact, or
transfer
Advance directive
General term of document where an individual can direct
future wishes of what should happen if mentally
incapable.
Personal directive
Advance health care
directive
Document used in Newfoundland and Labrador and
Prince Edward Island.
Advance refusal
A stronger version of an advance directive as it highlights
refusals.
Advance statement
A weaker version of an advance directive in that wishes
are stated rather than directed.
Authorization
Document previously used in Nova Scotia until replaced
by term personal directive in legislation.
Health care directive
Document used in Manitoba and Saskatchewan.
Joint crisis plan
Document used in the United Kingdom where facilitator
and producer of document negotiate an agreement.
Living will
Term widely used in the U.S. to highlight that document
is used while individual is alive.
Mandate in case of
incapacity
DESCRIPTION
Greek term used instead of Ulysses contract.
Document used in Alberta and Northwest Territories.
Power of attorney
(continuing, durable,
enduring, springing)
Document used in New Brunswick and Ontario.
Pre-commitment contract
Highlights an earlier commitment that involves making a
choice.
Psychiatric advance
directive
Documents used primarily in the U.S. for individuals with
mental health and are premised on the value of autonomy.
Psychiatric will
Original term proposed by psychiatrist Thomas Szasz to
protect patients from coercion or neglect.
Representation agreement
Document used in British Columbia.
Ulysses commitment
contract
Term used to reflect a commitment to follow through on a
self-binding contract.
Ulysses contract
Document used in Québec that is framed in legislation as
a contract.
Roman term used where individual makes self-binding
wishes.
Ulysses clause
Mill’s will
Term used in reference to John Stuart Mill’s
philosophical views of liberty rights.
Term reflecting a legal provision included in an advance
directive to make the document irrevocable.
Ulysses directive
Nexum contract
Advance agreement that follows a contractual model that
is inherently bilateral.
Term specifically avoids reference to contractual
relationship.
Ulysses statement
A one-sided statement that is less strong than a Ulysses
directive or contract.
Voluntary commitment
contract
Term highlights that document is not entered into under
undue influence or coercion.
HISTORICAL FACTORS IN THE DEVELOPMENT OF AUTONOMY IN MENTAL HEALTH
Greek & Roman
(300 BC - 400 AD)
Middle Ages
(400 - 1500 AD)
Renaissance
(1500 - 1600 AD)
17th Century
(1600 - 1700)
18th Century
(1700 - 1800)
19th Century
(1800 - 1900)
Early 20th Century
(1900 - 1950)
Late 20th Century
(1950 - Present)
Greece a city-state
with free choice
Treatise on medical
ethics (Rhazes)
Licensing of first
German psychiatrist
Physicians assess
mental capacity
Legislation (i.e.
Madhouses Act)
Legal writings by
physicians
Eugenics legislation
Scholarship in
mental health law
Lack of knowledge
of mental disorders
Leprosy led to
isolation
Philosophical writing
on dignity (Pico)
Philosophical
writings on reason
First legal case on
informed consent
Philosophical
writings (On Liberty)
Legal cases on
informed consent
Defensiveness in
legal medicine
Strong shame of
mental illness
Witch burnings and
mental disorder
Madness
represented in art
Family act as tutors
for mentally ill
Psychiatry develops
as discipline
Invasive treatment
(i.e. lobotomy, ECT)
Psychiatric drugs
Role of coercion
questioned
Experimentation
with mentally ill
Development of
DSM
Almhouses and
poorhouses
Lack of hospitals
Physicians without
high social status
Moral treatment
Electronic health
technology
Non-intrusive forms
of treatment
Autobiographical
writings
Consumer choice
movement
Care for mentally ill
was communal
Hippocratic Oath
Mere Facts
Investigation
Negotiation theory
Rise of mental
hospitals
Constitutionalism/
Rule of Law
Release of patients
from hospital (Pinel)
Autonomy (Kantian
philosophy)
Hospital restraints
curtailed
Dubious treatment
(whipping, stocks)
Twelve Tables
(Roman Law)
Psychopharmacology
Mental health laws
(legislation)
Historical Facts
Civil liberties
movement
CAUSES
Deep Structural
Contextual
Triggering
Hippocratic Oath/
Twelve Tables
Autonomy (Kantian
philosophy)
Mental health laws
(legislation)
Unconscious
Rise of mental hospitals
Constitutionalism/
Rule of Law
Psychopharmacology
Conscious
Dubious treatment
(whippings, stocks)
Hospital release (Pinel) /
restraints curtailed
Civil liberties movement
MOTIVATION
Transparent
Causal narrative
See text
Historical
Interpretation
See text
Synthesis
Interpretation
Jurisdiction
Governing Legislation
Instructional
Directive
Age
Obligation to
Inquire
Good Faith
Immunity
Lawyer
Required
Witnesses
Required
18
_
Y
N
Y
(one)
19
19
_
Y
Y
Y
(two)
Health Care Directive
16
18
N
Y
N
Y
(one)
POA for Personal Care
_
_
_
N
Under seal
Y
(one)
Y
(two)
Y
(one)
Maker+
Agent*
Personal Directive
18
Representation
Agreement
Alberta
Personal Directives Act (2000)
British Columbia
Representation Agreement Act (1996)
Manitoba
Health Care Directives Act (1993)
New Brunswick
Infirm Persons Act (1973)
Newfoundland &
Labrador
Northwest Territories
Advance Health Care Directives Act
(1995)
Personal Directives Act (2005)
Advance Health
Care Directive
Personal Directive
Advance Health Care
Directive
Personal Directive
16
19
Y
Y
N
19
19
_
Y
N
Nova Scotia
Personal Directives Act (2010)
Personal Directive
Personal Directive
19
19
Y
Y
N
Nunavut
_
Personal Directive
Proxy
Directive
_
Health Care
Directive
_
_
Ontario
Substitute Decisions Act (1992)
_
Prince Edward Island
Consent to Treatment and Health Care
Directives Act (1988)
Québec
Civil Code of Québec (1991)
Saskatchewan
Health Care Directives and Substitute
Health Care Decision Makers Act (1997)
Health Care
Advance Directive
Yukon
Decision Making Support and Protection
to Adults Act (2003)
_
Advance Health
Care Directive
_
_
Y
(one)
_
_
_
_
_
_
POA for personal care
16
16
_
N
N
Y
(two)
Advance Health Care
Directive
16
_
Y
Y
N
Y
(one)
Mandate
14
_
N
N
N
Y
Health Care Advance
Directive
16
18
_
Y
N
Y
(one)
Representation
Agreements
16
19
_
Y
N
Y
(one)

Psychiatric advance directives (PADs)
 Instructional directives: detailed information
 PADs legislation enacted in over 30 US states
 Specific to mental health issues

Mandates in case of incapacity
 Proxy directives: appoint agent
 Governed under Civil Code of Quebec (CCQ)
 Predominantly for end-of-life and finances/property
Instructional directive
Detailed mental health information
United States (30 states)
Proxy directive
Agent for finances/property issues
Quebec based (CCQ)
FORMS OF AUTONOMY
DESCRIPTION
TEMPORALITY
Decisional autonomy
Ability to make one’s own choices
Present
Dispositional autonomy
Focus on person’s life as a whole at the time
Present
Emotional autonomy
Grounded in human feelings
Present
Executional autonomy
Implementation of one’s decisions
Present
Functional autonomy
Engagement in activities of daily living and mobility
Present
Precedent autonomy
Precedence over competing interests
Past
Prospective autonomy
Looking forward from perspective on individual
Future
Rational autonomy
Grounded in logic and reason (subjective or objective)
Present
Relational autonomy
Reliance on others in decision-making
Present
Value autonomy
Independent views that align with personal value system
Present

Autonomy (ability to self-legislate)
 Decisions related to protective supervision shall respect one’s rights and
safeguard autonomy (CCQ, 257)
 When a court examines applications to institute protective supervision they
should consider the degree of autonomy of the person (CCQ, 257)

Empowerment (ability to share information)
 Mandate is a contract whereby the mandator empowers a mandatary to
represent him or her in the event of incapacity (CCQ, 2130)

Self-determination (ability to choose – yes/no)
 The right of the Québec people to self-determination is founded in fact and
in law. The Québec people is the holder of rights that are universally
recognized under the principle of equal rights and self-determination of
peoples (Act Respecting the exercise of the fundamental rights and
prerogatives of the Quebec people and Quebec State, s. 1)

Example of mandate found on site of Curateur Public Québec

Section 4.1: Responsibility of Mandatary
 “My mandatary is responsible for ensuring my moral and material
welfare. In this sense, he is authorized to make any decisions and
take any steps to meet my daily needs while respecting my wishes,
my personal and religious values, my habits, my standard of living
and degree of autonomy.”

Section 8: Partial Incapacity
 Homologation: “I am fully aware that should I become partially
incapable, some of the powers specified in this mandate could limit
my rights and autonomy.” OR
 Residual capacity: “I will retain full autonomy in decisions about my
person.” OR
 Prefer to refer it to the court

POAs are also proxy directives
 “a one-sided instrument, an instrument which expresses the
meaning of the person who makes it” (Sweatman, 1993)

Substitute Decisions Act, s. 50 – allows for a Ulysses like
arrangement
 The grantor can include a provision in their POA authorizing
attorney to use necessary and reasonable force to take a
person to any place for care or treatment;
 The grantor making the POA must then make a statement that
he understands the effect of making such a provision;
 A capacity assessor must assess individual’s capacity within
30 days after POA executed to ensure he understands it.

Important to distinguish between capacity (medical) from
competence (legal)

Challenges in assessing capacity (fluctuating; not global)
 Quebec law recognizes partial capacity (CCQ, 258)

Was the decision made during a “cool moment”?

Is there a “cloud of suspicion” that the individual was not
capable to complete the advance directive?

What happens to autonomy when an individual with
mental illness becomes (partially) incapable?

Assume an individual is capable and decides to make an
advance directive at Time 1 (T1) in the event he becomes
incapable at Time 2 (T2).

If the advance directive is challenged at T2, how much weight
should be given to the T1 preferences, which presumably were
based on prior experiences?

Does the specific instruction reflect a “momentary interest” or a
“fundamental value”?

Diachronic justification: respecting autonomy does not depend
only on retrospective values but includes looking prospectively

Authenticity: need to assess the decision that is most congruent
with a person’s life history

Simple commitment: promise or contract by one
person to undertake an obligation to act in a certain
way in the future

Pre-commitment: does not always involve a
reciprocal undertaking by another individual
(requires an inner resolution)

However, values and identities change over time that
can lead to successive selves

Justifications to honour advance directives based on
views of authenticity, identity, temporality, values...
1)
To examine the relationship between autonomy and
PADs through the lens of evidence-based ethics.
2)
To explore preferences for instructional (PADs) or
proxy (mandates) directives in mental health.
3)
To analyze advance directive legislation across
Canadian provinces and territories.
4)
To dovetail interdisciplinary aspects of PADs from a
legal, ethical, and medical perspective.
Quantitative
1)
Individuals with higher levels of autonomy, empowerment, and recovery are
more likely to choose instructional directives (PADs) over proxy directives
(mandates).
2)
Individuals with schizophrenia-spectrum disorder are more likely to choose
instructional directives (PADs) than individuals with depression or bipolar
disorder who are more likely to choose proxy directives (mandates).
3)
The degree of autonomy, empowerment, and recovery of individuals who
completed a PAD will increase more over a three-month period than among
individuals who completed a mandate.
Qualitative
4)
Individuals’ values and experiences with mental illness, as communicated
before and after completing a PAD, would be congruent with the instructions
included and reasons for choosing an instructional directive.
RESEARCH SETTING:
PARTICIPANTS:
• Douglas Mental Health University Institute, Montreal,
Quebec
• 65 individuals with mental illness (bipolar,
depression, schizophrenia) recruited by clinic and
community organization referrals
INTERVENTIONS:
• Psychiatric advance directive (instructional) or
mandate in case of incapacity (proxy)
STUDY DESIGN:
• Embedded mixed methods design
• Qualitative (phase I and III)/ Quantitative (phase II)
INCLUSION/EXCLUSION
CRITERIA:
• Inclusion: (i) bipolar, depression, schizophrenia; (ii)
18-65; (iii) English-speaking; (iv) followed by
psychiatrist. Exclusion: (i) incompetent to consent; (ii)
public curatorship; (iii) prior advance directive
MEASURES & INSTRUMENTS
Competence
*Autonomy
MacArthur Competence Assessment
Tool for Clinical Research
Ideal Patient Autonomy Scale
& Autonomy Preference Index
Making Decisions Empowerment Scale
Coercion
Psychopathology
*Recovery
MacArthur Perceived Coercion Scale
Brief Psychiatric Rating Scale–E
Recovery Assessment Scale
Insight
Preferences for ADs
Insight to Treatment Attitude
Questionnaire
Preferences for Advance Directives
Scale
Attitude to medications
Hogan Drug Attitude Inventory
*Empowerment
*Measure administered at baseline and 3 months
Phase I
Individuals with
mental illness
n=6
n=6
qual interviews
PSYCHIATRIC
ADVANCE
DIRECTIVE
completed
qual interviews
N = 65
Depression
n=24
Phase III
Phase II
Bipolar Disorder
n=16
n=6
QUAN
measures
(baseline)
QUAN
postmeasures
(3 months)
qual interviews
Interpretation
based on QUAN
(qual) results
Schizophrenia
n=19
Moment of choice between
PSYCHIATRIC ADVANCE DIRECTIVE
(instructional directive) OR
MANDATE (proxy)
Legend
QUAN = Quantitative data
qual = qualitative data
PSYCHIATRIC ADVANCE DIRECTIVE
MANDATE IN CASE OF INCAPACITY

A psychiatric advance directive (PAD) is a legal document
that allows you to protect your own personal interests if
you become incapable by documenting your treatment
preferences;

A mandate is a legal document used in Québec to
protect your personal interests if you become
incapable by appointing someone else to make
decisions on your behalf;

A PAD is an instructional directive (you declare your
detailed instructions about the kinds of medical
treatment you would like if you became incapable in the
future);

A mandate is a proxy directive (you appoint
someone else to make decisions for you if you
become ill and incapable to decide your choices);
A PAD informs your treatment providers who to contact if
you become incapable;


A mandate informs your treatment providers who to
contact if you become incapable;
You can appoint one or more persons to make decisions
on your behalf if you become incapable;


You can appoint one or more persons to make
decisions on your behalf if you become incapable;
You are able to include your detailed preferences
regarding crisis symptoms, medication, hospital choices,
and instructions to treatment providers who assist you
when you are incapable;


You should have complete confidence in the person
whom you choose to make your decisions for you;

You will sign the mandate along with two witnesses;

If you become incapable in the future, the mandate
is given to a court who will approve the document;

You will sign the mandate along with two witnesses;

A PAD differs from a will, and can only be used while you
are alive;

A mandate differs from a will, and can only be used
while you are alive;

If you become capable after a period of incapacity, you
can decide to change or terminate your mandate if you
would like.

If you become capable after a period of incapacity,
you can decide to change or terminate your
mandate if you would like.
QUANTITATIVE
QUALITATIVE

Descriptive

Content analysis (ATLAS.ti)

Univariate and
multivariate logistic
regression

Enumerative approaches

Transformation methods

Modified extreme case
analysis

H1: Individuals with higher levels of autonomy,
empowerment, and recovery are more likely to choose
instructional directives (PADs) over proxy directives
(mandates).
 Result: Overall, 76% of individuals (n=41) chose PADs while
24% (n=13) chose mandates.
 Result: Higher levels of autonomy, empowerment, recovery
does not significantly predict choice of document (n.s.)
 Result: Higher level of subjective negative perceptions towards
medication predicted choice of PADs (OR= 1.3, 95% CI: 1.01.6).

H2: Individuals with schizophrenia-spectrum disorder are more likely to
choose instructional directives (PADs) than individuals with depression
or bipolar disorder who are more likely to choose proxy directives
(mandates).
 Result: 100% of individuals with bipolar disorder, 75% of individuals with
depression, and 53% of individuals with schizophrenia chose a PAD.
 Result: Significant correlation between choice of document (PAD or
mandate) and type of mental illness (bipolar disorder, depression,
schizophrenia) (Fisher’s exact test, two sided, p < 0.01).
 Result: Individuals with schizophrenia were not more likely to choose
instructional directives versus proxy directives (n.s.).
 Result: Many individuals asked to complete both documents (forced choice).
Variable
Age
Sex (Male)
Schizophrenia-spectrum psychotic
disorder
Not currently working
Insight and awareness into need for
treatment
(ITAQ scale)
Intercept
Coefficient
(β)
-.038
1.934
-3.92
Wald
χ2
.979
4.12
9.14
p
value
.375
.042
.002
Odds Ratio
(95% CI)
0.96 (.89, 1.05)
6.93 (1.07, 44.99)
0.02 (0.002, 0.25)
-1.12
-.57
1.71
4.22
.191
.040
0.963 (0.89, 1.05)
0.57 (0.33, 0.97)
12.30
6.36
.012

H3: The degree of autonomy, empowerment, and recovery of
individuals who completed a PAD will increase more over a threemonth period than among individuals who completed a
mandate.
 Result: Individuals’ scores on autonomy, empowerment, and
recovery remained stable from baseline to 3 months when the PAD
and mandate group were combined (n.s.).
 Result: When PAD and mandate group were separated, there was a
small, yet significant, difference over 3 months on autonomy (API)
(t= -2.7 (36), p = .01).
 Result: Only two participants (n=59) asked to change a specific
provision in their documents at 3 months.
75
Percentage of maximum score
65
Ideal Patient Autonomy
Scale
55
Empowerment Scale
Autonomy Preference
Index
45
Recovery Assessment
Scale
35
25
T1 - Baseline
T2 - Three months
Mental Disorder
(Gender)
Bipolar disorder
(male)
Bipolar disorder
(female)
Extreme Outlier
Baseline
Reasons for Choice of PAD
PAD
Advantages Disadvantages Instructions
Extreme Outlier
3 Months
Qualitative Interviews
≈ 1 Month Later
“I had told my doctor that
↑Autonomy (IPAS)● -Can control
-Afraid of
-Agent: Sister ↑Autonomy
there’s diabetes in my family
decisionmandate
-Side effect
(IPAS)●
and I find that Zyprexa I’m
making and be because mother from
taking it made me gain some
involved
had him
medication
weight. Since I took Zyprexa
involuntarily
(weight gain)
I’ve gained maybe 60
hospitalized
-Refuse ECT
pounds... [autonomy means]
my well-being...I’ve been
doing that since I ran away
from my mom. I was 13... I
always managed to find a job
and have a place to live. I was
never on the street... I always
had a job and a place to live.”
↑Activation
“Autonomy is when you can,
(BPRS)●
-More things
-Mandate is
-Agent: Father ↑Optimism and
be on your own, have access
↑Willingness to ask can choose
more general
-Refusal of
control over future to your own money, have
for help (RAS) ●
herself
and simple
medications: (Empowerment
access to a car if you can
●
↑Doctor
-Very important -Does not give Seroquel,
Scale)
afford it... I believe [a PAD]
involvement (PAD to chose as
choice of
Zyprexa,
gives my family the right to
scale)●
hospitalized
hospitals
Lithium,
be part of my life... I could
↓Self-trust (PAD
many times
Zeldoz,
actually choose as well as my
scale)*
Clozapine
parents if I should be in a
-No ECT
hospital and for how long I
should be able to stay.”
Reasons for Choosing Mandate
Reasons for Choosing PAD
Detailed
21
Control
16
Choice
16
Family
11
Coercion
11
Substitute Decision-Maker
8
Rights
8
Knowledgeable
Trust Others
2
Physical Concerns
1
3
4
Legal
6
5
Legal
4
Lacks Knowledge of Illness
3
Mental Capacity
3
Simple
3
Substitute Decision-Maker
3
3
Mental Incapacity
2
Lack Finances
2
Side Effects
2
Family
2
Financial
1
0
No Side Effects
5
10
15
20
25
1
0
2
4
6
8
Medication Name
Medication Refusal
Zeldox
1
Clozapine
1
Amitriptyline
1
Gabapentin
1
Tegretol
1
Depakote
1
Prozac
1
Celexa
1
Effexor
1
Reasons for Medication
Refusal
Specific
17%
Paxil
2
Nozinan
2
Risperdal
2
83%
3
Largactil
4
Zyprexa
5
Haldol
Lithium
7
Seroquel
7
0
General
2
4
6
Number of Individuals Refusing Medication
8
Reported
Reported
Disadvantages
Advantages ofofPADs
PADs
12
Wording of document
Limits doctors judgment
10
Bureaucratic
10
No finances
Mental incapacity
Telling SDM
Finding
SDM
8
Lack knowlege of medications 7
Should trust doctor
Implementation of document
6
Need to maintain relationships
Will not need it
Stigma
4Two SDMs
Privacy concerns
Giving control away
Prediction
2 required
Self-binding
Legal
Too
detailed
0
Change decisions
Access to document
None
Mental health only
Choice of SDM
0
1
1
1
1
1
1
1
1
1
1
1
1
4
1
7
6
4
4
3
2
2
2
2
22
2
2 1
2
2
1
1
1
1
1
1
1
3
3
3
4
4
0.5
1
1.5
2
2.5
3
3.5
4
4.5
Aim
Purposive
Sampling
Methods
Data
Collection
Analyses
• To explore how individuals narrate perceptions of PADs in relation to
their experiences with mental illness.
• Phase I (n=6) [interview – PAD – interview]
• Phase III (n=6) [study – PAD – interview]
• Phase I interviews audio-recorded at home (≈58 minutes)
• Phase II interviews audio-recorded at hospital (≈48 minutes)
• Transcriptions
• Inductive/deductive coding
• ATLAS.ti software (multiple-rater)
• Content analysis, enumerative approaches, transformation methods
Medications
How meds affect
capacity?
Mental capacity
Do meds affect autonomy
directly?
How d-p affects
medications?
Whether taking
meds involuntary?
Doctor-patient
relationship
Relationship between
capacity and autonomy?
How d-p affects
autonomy?
Autonomy
How autonomy may
help recover?
Recovery
Capacity to
complete AD?
If involuntary R(x)
related to d-p relationship?
How involuntary R(x)
affects autonomy?
Involuntary
treatment
How AD will help
against involuntary R(x)?
How AD may
affect autonomy?
Advance
directives
SDM views towards
Views towards
autonomy?
recovery
Views of SDM
towards AD?
Substitute
Decision Maker
INTERVIEW GUIDE
2 Core Themes
Trust
Social Contact
12 Emerging Themes
Family
Isolation/reliance
Doctor-patient relationship
86 Themes Coded
Spirituality
Causal attribution
Absence of relationships
8 Defined Areas
Recovery
Autonomy
Advance directives
“Well for instance...it will give me a sense of
peace of mind that to know that if I get to the
point that I can’t say anything there’s something
in place that can represent myself.”
- Individual with bipolar disorder
“Someone has access to this to follow what was
decided and also with the...psychiatrist that I’m
seeing in the next building would have a copy of
it...that’s comforting in respect that there is no
unknowns…”
- Individual with depression
“I would like to negotiate but…sometimes a person’s
looks don’t correspond with their mental capacity.”
- Female with depression
“To negotiate with my doctor and my nurse and to
talk and after we have reflection…But they talk to
me first and we have a discussion.”
- Female with schizophrenia
That’s one of my struggles at the moment. I’ve always been very
autonomous, always taken care of things in spite of my alcoholism...So my
autonomy is, I wouldn’t say it’s gone, but it’s not that I don’t feel the
autonomy it’s just I have problems dealing with day to day responsibility at
the moment…it’s nothing major that I have to do it’s just I just don’t feel
like doing it anymore. As if everything I’ve done before I’ve given 110% and
I just can’t give anymore. So that sort of, excuse the expression, screws up
my autonomy because I’ve always been autonomous I’ve never really had
any problems with that...except that I have problems dealing with
responsibility or accepting or wanting to do things...autonomy is good, it’s
always been good, at the moment it’s not as good as it was and I’m sure
it’ll come back.
- Individual with depression
TRUST DOCTOR

SOCIAL NETWORKS
“He knows me for many
years...its a very trustful
relationship.”

“My trust is complete...I don’t
have mistrust in the medical
system.”

- Female with depression
- Female with schizophrenia

“I don’t have very much support
other than I totally trust the
doctors.”
“My best friend is me...it’s not
others.”
- Female with schizophrenia
- Male with depression

“They are the best doctors...I
trust them with my life”
- Female with bipolar disorder

“I don’t have too many
relationships that I can rely
on...maybe one that I would
trust my life with.”
- Male with bipolar disorder
Most likely
to complete PAD
Low
Level of social network
Willingness to complete PAD
High
Low
Trust in Doctor
High

Sample size

Participant selection bias (phase II)

Hybrid nature of PAD

Interviewer bias
1
• Individuals with specific mental disorders may prefer
Call for evidence base to determine if
certain types of advance directives (instructional or
individuals prefer instructional or
proxy).
proxy directives.
• Trust, social networks, and negotiation are critical
Brown, M. (2003). J Law Med, 11(1), 59-76.
from patients’ perspectives.
2
Recommendations to use advance
directives in Canada, yet no analyses
of legislative responsiveness.
• Statutory analyses reveals jurisdictional disparities
in how advance directives are currently used in
Canada (i.e. proxy/ instructional; age of maker;
permissible/prohibitive instructions; duty to consult).
Kirby Report (2004); Recovery Report (2009).
3
Relationship between advance
directives and autonomy tenuous for
clinicians and courts.
DeWolf Bosek, M. S., et al. (2008), JONAS Healthc
Law Ethics Regul, 10(1), 17-24; Starson v. Swayze
[2003] 1 S.C.R. 722.
• Thesis examines autonomy and advance directives
from empirical ethics, juridical, and philosophical
perspectives.
Definitions of autonomy,
empowerment, dignity
PHILOSOPHICAL/
THEORETICAL ANALYSES
EDUCATION/
KNOWLEDGE DISSEMINATION
Devise toolkits
Electronic registry
ETHICAL
Values
PSYCHIATRIC
ADVANCE
DIRECTIVES
Rights and
Obligations
LEGAL
Legislative reform
Definitions of autonomy
STATUTORY/
COMMON LAW ANALYSES
Communication
of Preferences
CLINICAL
EMPIRICAL/
EVIDENCE-BASED ANALYSES
National prevalence rates
Negotiation training