Transcript No Slide Title

WHAT TO TREAT?
HOW TO TREAT?
WHO SHOULD DECIDE?
Role & Responsibility of Carers & Patients in
Healthcare Delivery & Treatment Decision
VIVIAN TAAM WONG
HCE, QMH
IHF Congress May 2001
WHAT? HOW? WHO?
Exclusion
 End of life decisions
 Resource related decision
Inclusion
 Cognitively Capable Patients/Parents
 Life threatening diseases
 Health impeding diseases
WHAT? HOW? WHO?
International Movement
Preferences - Patient v. Doctor
Benefits & Risks
Decision Making Models & Stages
The Way Forward
International Movement
 American College of Physicians
patient has a right to self-determination
 Consumerism
 accountable to patients, public, third party payers
 caveat emptor (let the buyer beware)
 World Health Organization
patient involvement in care is a social, economic and technical
necessity
 USA Canada
 laws precluding treatment without informed consent
 laws requiring doctors to inform patients on treatment options
(e.g. breast cancer, prostate cancer)
 Centre for Health Information Quality UK
Promoting Patient Choice - King’s Fund
 Japan paternalism & informed consent
Patient’s Expectation
 Doctor treats one as an individual
 doctor’s ability and willingness to
contextualize the decision-making
process by framing the discussion in
terms of each patient’s unique
background characteristics and life
experience
Charles et al 1999
Patients want more information & participation
Hypertension — 41% wanted more information
3% self, 19% shared, 47% Dr for decision
Angiogram — 98% doctor for problem solving
78% self for decision making
Med outpatients —79.5/100 self for information
67/100 self for participation
Seizure patients — 99% knew benefits of drugs
50% self for final decision
Discharged patients — 98% treatment should be discussed
President’s Commission — 72% discussed alternatives
Cancer inpatient — 92% wanted information
— 69% wanted participation
Doctor’s Different Perception / Attitude
Seizure outpatient
— 50% self for final decision
33% neurologist / 7% Paediatrician
agreed with patients
Inpatient & outpatient — 10% self for decision making
100% wanted information
doctors rarely discussed because
only one treatment
Hypertension
— 80% doctor said patient took part /
30% patient agreed
— 63% doctor made decision /
20% doctor agreed
Patient’s Inhibition
Med Ward — “doing what is right”
“not getting into
trouble”
Mother of child with medical
problem — ¼ did not mention
greatest concern
Reluctant to ask for further
information when they wanted it
Socio-demographic Characteristics
& Role Preference
More passive role

older

lower level of education

lower social class
No difference

marital status

family history

type of presentation
Not helpful in clinical practice
Evidence-based Decision Making Dr’s Perspective
 Accurate & unbiased
scientific information
 Most effective = best
treatment
 Not choosing most effective
treatment is “irrational”
 It is doctor’s duty to change
patient’s mind
Evidence-based Decision Making Patient’s Perspective
 Patient’s belief, value, fear,
illness experience & information
about other options affect how
information is processed and
understood
 Average outcome for aggregate
groups may not be personally
meaningful
 inappropriate to generalize
research results
 “Correct” choice is individual
preference
Benefits of Information Choice /
Active Role in Medical Treatment
 obese children lost more
weight
 better control of BP
 better compliance to drugs
 more satisfaction
 more alleviation of symptoms
? reduce risk of litigation
Benefits of Choice in Breast Cancer Surgery
 less depression & loss of self esteem
 less anxiety depression & sexual dysfunction (12m)
no different at 3 years
 higher level of life satisfaction (3m)
no different at 6m, 12m
 less depression, anxiety (before surgery, 2m)
no different at 4m
 mastectomy — no different
lumpectomy — more depressed, distressed, angry
Risks of Open Exchange
 provoke anxiety of patients
 more demand on doctors
 increased demand from articulate minority
? not cost-effective 
 fees
 number of patients seen
Predominant Treatment Decision Making Models

Paternalistic

Shared decision making

Informed
Paternalistic Model - Assumption
 single best treatment
doctors well-versed in current clinical thinking
 doctors know the best treatment available
consistently apply this information
 doctors in best position to evaluate trade-offs
 professional concern for welfare of patients 
legitimate investment in each treatment decision
Paternalistic Model - Cultural Obstacles
 Pt & Dr expect dominant role
for Dr
 Status difference in terms of
education, income, social
class also contribute to power
differential
 In the decision process, the
doctor does not reveal the
knowledge & value
considered & how they are
weighted
Informed Model - Assumptions
 with adequate information,
patient is capable of
making best decision
 doctor should not have an
investment in the process
and the decision
 ? Doctor’s bias (different
interest & motivation)
Informed Model - Cultural Resistance
“This consumer oriented model emphasizes patient
sovereignty and patients’ rights to make independent
autonomous choice”
Quill & Brody 96
“This is difficult for doctors to accept since it runs
counter to decades of professional medical training
and practice in which clinical experience, expertise
and knowledge have been assumed to be the
quintessential skills that doctors have to offer”
Charles etal 99
“Surgeons expect compliance”
Shared Decision Making Model
Dr persuade &
recommend;
listen &
understand why
patients choose
different option
 Dr & Pt share information with each
other
 negotiate as equal partners
“Creating a safe environment for the
patient so that she feels comfortable in
exploring information and expressing
opinion is probably the highest
challenge for the Dr who want to
practice a shared approach”
Guadagnoli & Ward 98
 agreement - greater commitment to
the treatment
Treatment Decision Making: Analytical Stages
 information exchange
 deliberation
 decision on treatment
Information
Paternalistic
Shared
Informed
Flow
One way
Two way
One way
Direction
Dr to Pt
Dr
Type
Medical
Amount
Minimum
Medical &
Personal
All relevant
Deliberation
Dr alone or
with other Drs
Dr & Pt &
Pt & potential
potential others others
Decision
Dr
Dr & Pt


Pt
Dr to pt
Medical
All relevant
Pt
Charles et al 99
Personal Information
 health history
 life style
 social context - work
family
 belief & fear about disease
 knowledge of alternatives
 religion
Decision Making Aids
 decision tree
 decision board & sheet to take home (Levine 92)
 flip chart with audio tapes
 interactive video
 share-decision-making program
Beyond Decision Making Aids
 relationship building
 patient assesses doctor’s practice
(style, attitude, behaviour)
vs his expectation
 building TRUST
Decision Making Roles
A
I make final selection
B
I make final selection after seriously
considering my doctor’s opinion
C
Doctor & I share responsibility
D
Doctor makes final decision but seriously
considers my opinion
E
Leave all decisions to my doctor
Degner & Sloan 92
Role Preference Card Sort Procedure
 5 cards are shuffled
 presented with subsets of 2 cards
 asked to choose between 2 roles
 process continues until preference order of all 5 is
established
 preference order recorded e.g. ABCDE
Beaver et al 1996
Nurse Intervention Strategy
Neufield 93
Distribution of Preferences
Active
Shared
Passive
A or B
C
D or E
Cancer
20%
28%
52%*
Benigh
23.5%
45.5%
31%
Role
*65% of cancer chose
C+D
Summary
 Patients want more participation
 More participation is beneficial
 Shared decision making is the preferred model
The Way Forward
Partnership with Patients
 Health professionals need to be aware that
patients have preferences. This will facilitate
more effective communication.
 Doctors should try to engage ALL patients in
decision making, albeit at varying degrees
 Encouraging an active role when it is not
desired can result in undue anxiety and stress.
If active role is desired, decision support is
needed.
Partnership with Patients
Skills Needed
 assess patient’s information need
 assess patient’s decision making
preference
 exchange information
 identify treatment options with
supporting evidence
 establish preference
 support patient to make decision
Partnership
with Patients
“Patients want honest, unbiased, up to date
information about their illness, its likely outcome,
and the risks and benefits of different interventions.
They also want help to identify and secure their
treatment preferences. When uncertainty exists it
should be discussed, not omitted or glossed over,
and advice should be explicitly supported by the
best available evidence.”
Dr. Angela coulter
Director of King’s Fund Centre