Besluit tot operatie: Wat wil de patient?

Transcription

Shared decision making
Anne Stiggelbout
Dept. of Medical Decision Making
Quality of Care Institute
Leiden University Medical Center
Overview
• A little history
• What is it then?
• The steps in SDM and some evidence
• So does it happen?
• Is it hope or hype?
• Implementation initiatives
• Challenges for the future
Stiggelbout EACH 2014
A little history of shared decision-making
Two lines of thinking have led to the interest:
1. New Medical Ethics: doctor-patient roles (60s)
2. Jack Wennberg c.s.: practice variation (80s)
Stiggelb
out
EACH
1. New Medical Ethics late 60s/early 70s:
• medicine is not just about saving lives (Hippocratic oath)
but also about quality of life -> patient autonomy (end of
life decisions)
• “Models for Ethical Medicine in a Revolutionary Age:
What physician-patient roles foster the most ethical
relationship?” (Veatch 1972)
1. Ethics: A plethora of doctor-patient models
Veatch ‘72:
priestly
collegial
contractual
engineering
Veatch 1972 Hasting Ctr Report
• “In the contractual model, then, there is a real
sharing of decision-making” (p7)
Models of doctor-patient relationship
Veatch ‘72:
priestly
collegial
engineering
contractual
E&E ’92:
paternalistic
deliberative
interpretative
informative
Doctor’s Role (E&E 1992)
Paternalistic
Deliberative
Interpretative
Informative
Guardian
Friend/
Counselor/
Teacher
Adviser
Competent
technical expert
Patient values (E&E 1992)
Paternalistic
Deliberative
Interpretative
Informative
Objective
Open to
development/
undefined &
conflicting
Defined,
Shared by doctor
and patient
revision
Known to
Need elucidation patient
SDM models: Charles, Gafni, Whelan
SHARED DECISION-MAKING IN
THE MEDICAL ENCOUNTER: WHAT
DOES IT MEAN? (OR IT TAKES AT
LEAST TWO TO TANGO)
Social Science and Medicine 1997
DECISION-MAKING IN THE
PHYSICIAN-PATIENT ENCOUNTER:
REVISITING THE SHARED
TREATMENT DECISION-MAKING
MODEL
Social Science and Medicine 1999
Veatch ‘72:
Priestly
collegial
engineering
contractual
E&E ’92:
paternalistic
C-G-W ’99:
paternalistic
deliberative
interpretative
shared
informative
informed
A little history of shared decision-making
2. Jack Wennberg: “practice variation”
• The Dartmouth Atlas
• If practice variation, then not one best decision:
“preference sensitive” decisions
Two types of decisions
• "effective "
• General consensus about best treatment (scientific
certainty, more pros than cons)
• Aspirin after cardiac infarction
• "preference-sensitive”
• Decision depends on subjective tradeoffs
• Or insufficient evidence for one decision
• Mastectomy vs breast conserving surgery
Research on variation in preferences
Consistently wide variation in preferences found
(among doctors, among patients, and between)
Clinicians poor at predicting patient preferences:
• Preferences for information
• Treatment preferences
• Preferences for role in decision making
Example: variation in required benefits
Kunneman et al BJC 2014
Variation in preferences for trx outcomes
Pieterse et al. 2008
Prediction of treatment prefs by clinician
Patient preference RT dose
Prediction of radiotherapist
Low
High
Total
Low
42
10
52
High
30
19
49
Total
72
29
101
Stalmeier et al. JCO 2007
From pref variation to shared dm
• Clinicians, and patients, vary in preferences
• So more preference-sensitive decisions than one
may think...
•&
Clinicians poor at predicting patient preference:
Need for shared decision-making!
SDM and effective vs preference sensitive
• Effective DM aimed more at patient agreement
with advice
• Preference-sensitive DM aimed at eliciting
preferences of patient
• Shared DM meant for both, but most
imperative for Preference Sensitive decisions
• For effective a more deliberative model
• ISSUE FOR DISCUSSION…
From practice variation to SDM
Political plea for SDM:
• Clinicians prone to over-treatment
• Patients more conservative than clinicians:
SDM will “save health care” through cost reduction
Recap: history of SDM
Shared Decision Making
Both patient and clinician:
1. Are involved in decision making
2. Exchange information
3. State their preferences regarding
diagnostics/treatment(s)
4. Agree with the final decision
Charles, Whelan, Gafni 1997/1999
SDM in practice
• Ever seen/experienced or done SDM?
SDM in practice
• Ever seen/experienced or done SDM?
• A quick overview of SDM
Integrative model (Makoul&Clayman ‘06)
• Define/explain problem
• Present options & Discuss pros/cons
• Discuss patient values/preferences
• Discuss patient ability/self-efficacy
• Doctor recommendations
• Check/clarify understanding
• Make or explicitly defer decision
• Arrange follow-up
SDM: a practice model
Elwyn et al. J Gen Intern Med. 2012
SDM Steps one by one
SDM Steps: choice talk
1. Clinician informs patient that decision is to be
made and patient’s opinion is important:
• OPTION AWARENESS!
&
• DOING NOTHING is a CHOICE
“Step 1: choice talk” occurrence?
Review Couët on OPTION scale (2013) :
1. Only 5/16 studies explained equipoise
2. Performed to a baseline standard in 2/16
Note: in Couët “observed” usually meant:
perfunctory or unclear attempt
“Step 1: choice talk” occurrence?
• Rectal cancer, radiation oncologist (N=51)
• Breast cancer, medical oncologist (N=49)
Reasons for Encounter?
Yes: 72 %
explain options: 63 %
make a decision: 4 %
And 0% provided more than 1 option!
Kunneman, Engelhardt (in prep)
Step 1: “framing” the decision
Standard treatment:
Breast conserving
surgery+RT
If tumour too large:
Neoadjuvant &
breast conserving
Amputation
Options?
A breast cancer patient (in Kil&Koole ‘13)
“From
one moment to the other, I had lost all
control over my body. As if the doctors, who
were all very friendly and meant the best for
me, had taken over.”
She regrets her breast conserving treatment.
Her surgeon had said:
“Only hysterical women who are really scared
choose breast amputation.”
Step 1: “framing”
the decision
“framing”
van de beslissing
bij in
GBSDM
Breast
conserving
surgery +RT
Neoadjuvant
& breast
conserving
surgery
Amputation
Options!!!
Thanks to Glyn Elwyn, Boston 2009
SDM Steps: option talk
made and patient’s opinion is important
2. Clinician explains the options and the pros and
cons of each (relevant) option
Step 2: options and pros and cons
• Patients often don’t know the options
(don’t experience a treatment choice)
• Patients wish to know more than docs think
• Patients often don’t realise risks involved
• Patients often feel uninformed
e.g.
Kiesler&Auerback (2006), Berman et al (2008) Lagarde et al. 2008,
Janssen et al. 2009
The informed patient…
Sorry, but
what’s this one
for again?
I have no idea,
it’s the patient’s.
Step 3: patient preferences
3. Clinician & patient discuss patient preferences
Preferences: architecture, not archeology
Step 3: patient preferences
Abdominal Aortic Aneurysm (Knops et al 2010)
N=35 patients, N=11 surgeons
Treatment preference elicited : 23 %
Couët (2013, review): idem in 1 out of 17 studies
Rectal cancer (see Pieterse, this afternoon)
Stiggelb
ut ECH
Option talk: deliberation
4. Clinician supports patient in deliberation
Step 4: support in deliberation
Resultaten: Ervaren betrokkenheid in besluitvorming
To what extent time/space to express view on pros/cons?
25,0
Percentage
20,0
15,0
10,0
5,0
0,0
1 helemaal
niet
2
Kunneman et al. 2014
3
4
5
6
7 heel erg
veel
Decision talk: decision & next steps
4. Clinician supports patient in deliberation
5. Clinician & patient discuss the decision and
possible next steps/follow-up
Step 5: decision & next steps
Couët (2013, review):
The 3rd most consistently observed behavior:
- 69% indicated need to review/defer
- only in 20% at baseline standard
So does SDM happen…?
• It seems not… despite clinicians saying they
perform SDM
• Studies on overall involvement using OPTION
scale (0-100):
• Couët (review)
•
< 1:4 was ≥ 25 (cutoff)
• LUMC: Kunneman (in prep.)
Snijders (2014)
Mean= 23 ± 14
Mean=10
Med=7
So what does happen?
Paternalistic
Deliberative
Promote P’s
Inform P,
wellbeing,
independent of P
Persuade P of
preferences
most admirable
values
Interpretative
Informative
Inform P,
Provide factual
info,
Elucidate P
values,
(Emanuel & Emanuel 1992)
• Implicit normativity (Molewijk et al. 2003):
• Doctor steers patient towards treatment she thinks is
‘good’ for the patient
• But seen for preference sensitive decisions
Strategies used to steer patients
• Trying to avoid offering other treatment
alternatives
• ‘‘We are in favor of’’: presenting treatment
as an authorized ‘‘we’’ decision
• The illusory power to decide
• Dramatizing the evil
Karnieli-Miller Physician as partner or salesman? (2009)
Strategies used to steer patients
• Deterring vs. encouraging: using others as
examples
• Emphasizing the benefits of treatment and
frightening patients about non-compliance
• Emphasizing the ability to control the side
effects of the treatment
• “From mild to serious medicine:’’ a gradual
decision
Karnieli-Miller Physician as partner or salesman? (2009)
Use of implicit normativity in oncology
Presenting treatment as an authorized ‘‘we’’ decision
92 (83%)
The illusory power to decide
55 (50%)
Emphasizing the ability to control the side effects of
the treatment
55 (50%)
Downplaying the treatment's impact
47 (42%)
Presenting side effects after treatment decision
73 (66%)
Engelhardt et al. 2014
Associations with patient characteristics
N (%)
Median P
Tumor size
NS
Axillary lymph nodes
NS
Tumor grade
NS
Decision
No
Partially
Yes
12 (11)
10 ( 9)
87 (80)
3 (1-9)
4 (1-9)
6 (2-9)
0.04
The medical oncologist sharing dm?
“Had you been younger, we would have advised
chemotherapy anyhow, but now I have doubts.
So what we will do, luckily you will undergo
radiation therapy first… I want you to be
evaluated by a geriatrician, and by my colleague in
hospital Y. But anyhow, the advice will be
hormonal treatment. Possibly, but with big
hesitations, we can think about adding another
treatment”.
About hormonal treatment
“Those hormones are really good, but not
appropriate now. Which is unfortunate, for it is
quite easy, hormones. You take a tablet and you
notice very little”
“When you take aspirin, you may be
hypersensitive . This may happen with hormones
too”.
“And that’s with all medicines. Paracetamol has
many side effects too, but not with most people’.
An offer you cannot refuse!
“This is a reason for us to offer you chemotherapy
after surgery”
“Me personally, we as oncologists, think this
worthwhile”
• Implicit normativity: “physician as sales(wo)man”
• Not just for effective decisions!
• Molewijk et al. 2003
SDM: Hope or Hype?
• Exponential increase in papers in high impact
journals from 1996-2011
• with linear increase of research papers on SDM
=> increased dissemination to medical
community?
(Blanc 2014)
Research papers on SDM?
• Few studies actually measure what occurs in the
consultation
• Many studies use patient-perceived roles (using
e.g. Control Preferences Scale)
• Studies that use observations of consultations
have mostly evaluated doctor-behavior
(OPTION, DAS-O, ACEPP coding instruments)
Research on SDM?
• Little evidence on occurrence
• Therefore little known about impact
• Most assertions about impact are based on
RCTs of patient decision aids
Presumed effects of SDM
• More satisfied patients
• Less unwarranted practice variation
• Lower costs?
• More equality (not just highly educated
have a say)
• Less litigation
• Better adherence, better quality of life
SDM: Hope or Hype?
• But even in the absence of these… There is a
strong ethical imperative for SDM
• Many questions still…
• But many implementation activities aimed at
barriers to SDM
Barriers to implementation of SDM
• how healthcare is organized:
• Time, continuity of care, workflow, setting
• What happens during consultation:
• Interaction: power imbalance, clinician style
• Preparation for SDM
Légaré 2010, Elwyn et al. 2013, Joseph-Williams et al. 2013
Examples: Supporting patient DM
• Helping patients prepare for the encounter:
• “Ask 3 questions” (Shepherd et al. 2011, MAGIC)
• Question prompt lists
• Patient decision aids
• Etc.
• Change patient attitudes
• Patient knowledge not inferior to medical knowledge
• No need for fear of being a difficult patient
Interventions aimed at increasing SDM
Légaré et al. Cochrane Sept 15th:
• interventions targeting patients, healthcare
professionals, or both
• 39 studies (38 RCTs)
• E.g. training, audit and feedback, educational
materials/meetings/outreach visits, decision
aids, a.o.
Findings:
• At most slight significant effects
Largest effects seen if both groups targeted
• No effects on duration of consultation, patient’s
health, cost of the intervention (and no harm)
• Few studies, large heterogeneity, and low to
very low overall quality of evidence (GRADE)
Légaré Cochrane Database Syst Rev 2014
“It is uncertain whether interventions to improve
adoption of SDM are effective given the low
quality of the evidence.
However, any intervention that actively targets
patients, healthcare professionals, or both, is
better than none.”
Légaré Cochrane Database Syst Rev 2014
SDM: Hope or Hype?
• Concerted implementation action needed!
• Patient societies
• Professional societies
• Government bodies
• Charities
• Health Insurance companies
• And proper evaluation needed
SDM: Hope or Hype?
Challenges ahead:
• research and training & education
• important role for EACH
Research challenges
• Develop instruments to assess SDM
• Assess communication best practices to support
SDM
• Evaluate tools other than decision aids
• Assess impact of SDM on outcomes
• SDM in vulnerable groups (age, language,
culture)
• Etc etc
Challenges: education and training
• Core competencies for SDM training programs
• RELATIONAL COMPETENCIES
• RISK COMMUNICATION COMPETENCIES
(Légaré et al. 2013)
• Training: students
• Training of residents
• Training: doctors
• Train the trainers!
Challenges: education and training
• Through communication curricula?
• Or use Evidence-Based Medicine as a Trojan
Horse?
• Evidence-Based Medicine =
• Evidence & Clinical Expertise & Patient’s
needs/preferences
EBM and SDM
• Create awareness of preference sensitivity!
• SDM imperative for preference sensitive
decisions
• But who defines what is preference-sensitive…?
• “Practitioners, together with their patients, are
free to make appropriate care decisions that
may not match what “best (average) evidence”
seems to suggest”
(Godlee, BMJ, june 2013)
In conclusion
• Shared Decision Making is a buzz word
• Occurrence not common yet
• But a strong movement towards implementation
• Many challenges to be met:
• Research, Training, Implementation
• Concerted action needed!
Acknowledgements
Dutch Cancer Society
Acknowledgement!
Hanneke de Haes:
PhD supervisor, colleague,
and friend
1995
2014

Besluit tot operatie: Wat wil de patient?

Transcription

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