A talk given at the Berman Institute of Bioethics on Johns Hopkins.

1. Zackary Berger, MD, PhD
Johns Hopkins School of Medicine
Berman Institute Seminar Series
February 27, 2012

2. Autonomy: uncontroversial in
principle
 Standard view (Schneider):
 “The physician’s role is to use training etc. to provide
patient with facts…and alternative treatments”
 “The patient’s role is to provide the values to evaluate
alternatives and select the one that is best”
Encouraging Patient Autonomy From Theory to
Practice: Z. Berger, Berman Seminar, 2/27/2012
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3. …so we can remove impediments
to autonomy and let patients
practice it
 “[Once] impediments [to autonomy] are gone, [it is
assumed] people will naturally gather evidence about
the risk and benefits of each medical choice, apply
their values to that evidence, and reach a considered
decision” (Schneider)
Encouraging Patient Autonomy From Theory to
Practice: Z. Berger, Berman Seminar, 2/27/2012
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4. Encouraging Patient Autonomy From Theory to
Practice: Z. Berger, Berman Seminar, 2/27/2012
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5. How is autonomy exercised in
practice?
 “I don’t know anything, how am I supposed to decide?”
 “Mandatory autonomy”
 We should expect that all patients exercise autonomy
 Prophylactic argument
 Therapeutic argument
 False-consciousness argument
 Moral argument (from authenticity)
 Not all patients want all autonomy all the time
 Various principles must be balanced
 “Encouraged autonomy”
 Assessing patients’ readiness towards various domains of
autonomy, and encouraging the exercise of preferences
Encouraging Patient Autonomy From Theory to
Practice: Z. Berger, Berman Seminar, 2/27/2012
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6. Broader definitions of autonomy
 Decisional autonomy
 Taking part in medical decision-making
 The autonomy to choose autonomy (second-order
autonomy; G. Dworkin)
 Relational autonomy
 Autonomy is never exercised in isolation
 Social support and recognition of the person's status
affect her capacities for self-trust, self-esteem, and self-
respect
 …which in turn affect her ability to exercise autonomy
Encouraging Patient Autonomy From Theory to
Practice: Z. Berger, Berman Seminar, 2/27/2012
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7. Patients are various
 Actual situations can force one to reconsider the
meaning or content of a concept
 The thick description of a situation can inform and
modify ethical rules
Encouraging Patient Autonomy From Theory to
Practice: Z. Berger, Berman Seminar, 2/27/2012
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8. Encouraging autonomy in clinic and
in the hospital
Encouraging Patient Autonomy From Theory to
Practice: Z. Berger, Berman Seminar, 2/27/2012
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9. One aspect of autonomy in the
clinic: setting the agenda
Encouraging Patient Autonomy From Theory to
Practice: Z. Berger, Berman Seminar, 2/27/2012
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10. Who controls the conversations?
Encouraging Patient Autonomy From Theory to
Practice: Z. Berger, Berman Seminar, 2/27/2012
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11. Encouraging Patient Autonomy From Theory to
Practice: Z. Berger, Berman Seminar, 2/27/2012
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12. What is “supposed to” happen?
 Allow patient to tell story
 Don’t interrupt
 Probe to exhaustion – “Is there anything else?”
 Set explicit agenda
Encouraging Patient Autonomy From Theory to
Practice: Z. Berger, Berman Seminar, 2/27/2012
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13. How do physicians elicit patient
concerns and set an agenda for the
clinic visit?
Encouraging Patient Autonomy From Theory to
Practice: Z. Berger, Berman Seminar, 2/27/2012
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14. Study Design, Population, and Setting
 Study Design
• Quantitative and qualitative analyses of data from the
Enhancing Communication and HIV Outcomes
(ECHO) Study
 Study Population
• 45 HIV providers and 423 patients
 Setting
• 4 HIV specialty care sites in Baltimore, Detroit, New
York, Portland
Encouraging Patient Autonomy From Theory to
Practice: Z. Berger, Berman Seminar, 2/27/2012
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15. Analysis
 Developed themes related to
 how the visit is opened
 whether and how providers elicit patient concerns
 whether and how an agenda is set for the visit
 For 3 of 4 sites, coded a random selection of 2
encounters per provider (66 encounters total)
 At 4th site (Detroit) a nurse started each visit, thus not
relevant to our aims
Encouraging Patient Autonomy From Theory to
Practice: Z. Berger, Berman Seminar, 2/27/2012
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16. Opening of the Visit
Type of Opening Frequency Example
Total N=66
General Open Question 41 “How are you”
Leading Question 7 “Everything okay?”
Solicitation of 1 “Tell me, is there anything that you
concerns/priorities wanted to discuss today, in
particular?”
Atypical (no opening 17 --
question)
Encouraging Patient Autonomy From Theory to
Practice: Z. Berger, Berman Seminar, 2/27/2012
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17. Patient Response
Type of Response Frequency Example
Total N=49
General 30 “Fine”
Specific Concern 14 “My legs are hurting me”
Sequence interrupted (no 5 --
response)
Encouraging Patient Autonomy From Theory to
Practice: Z. Berger, Berman Seminar, 2/27/2012
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18. Further Solicitation of Concerns
Type of Response Frequency Example
Total N=44
Probing to exhaustion 12 “Is there anything else?”
No further probing 32 --
Encouraging Patient Autonomy From Theory to
Practice: Z. Berger, Berman Seminar, 2/27/2012
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19. Agenda Statements
Type of Agenda Frequency Example
Statement Total N=66
None 40 ---
Physician-directed 20 D: “You’re here because we wanted to
jump on your blood pressure”
Patient-directed 3 P: “So you want to do the blood work
for my CD4 count and viral load. Can
you check me for, um, is there blood
work for diabetes?”).
Collaborative 3 D: “Okay. Anything else goin’ on?”
P: “Uh, not really. I think I’m so
centered on the pain thing that I,
that’s my focal point now”
D: “Well let’s make a priority”
Encouraging Patient Autonomy From Theory to
Practice: Z. Berger, Berman Seminar, 2/27/2012
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20. Generic opening questions don’t
solicit concerns
 Frequently used by providers
 Not effective in eliciting concerns
 Physicians do not typically continue to probe further
 Patients’ response
 suggest that they function as a social exchange rather
than genuine exploration of patient priorities
Encouraging Patient Autonomy From Theory to
Practice: Z. Berger, Berman Seminar, 2/27/2012
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21. When the doctor asks “How are
you?”
“When the doctor asks, ‘How are you?’ and you say,
‘Fine,’ the doctor thinks he has gathered clinical facts,
while you think you have been polite.” Mother of a
Child with Cancer (quoted in Lynn J and Harrold J,
Handbook for Mortals: Guidance for People Facing
Serious Illness)
Encouraging Patient Autonomy From Theory to
Practice: Z. Berger, Berman Seminar, 2/27/2012
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22. Agendas are not often explicitly
stated
 When an agenda is stated, it tends to center on
physicians’ priorities
 Negotiation of the visit agenda between patient and
provider is rare
Encouraging Patient Autonomy From Theory to
Practice: Z. Berger, Berman Seminar, 2/27/2012
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23. Ways to encourage autonomy in
clinic
 Give patients the explicit opportunity to state their
priorities
 Discuss (negotiate) with them the agenda for the visit
Encouraging Patient Autonomy From Theory to
Practice: Z. Berger, Berman Seminar, 2/27/2012
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24. Setting agenda: recommendations
 Needed: Interventions to educate physicians and
patients about how to most effectively discuss/express
concerns and set an explicit visit agenda
 Physicians ought to be aware that a question such as
‘How are you?” is not always interpreted by the patient
as an opportunity to express their concerns
 Patients should be empowered to express their concerns
and negotiate the agenda
Encouraging Patient Autonomy From Theory to
Practice: Z. Berger, Berman Seminar, 2/27/2012 24

25. Autonomy in the hospital:
understanding communication
Encouraging Patient Autonomy From Theory to
Practice: Z. Berger, Berman Seminar, 2/27/2012
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26. Encouraging Patient Autonomy From Theory to
Practice: Z. Berger, Berman Seminar, 2/27/2012 26

27. Autonomy in the hospital:
preliminary work
 11% of our sample (5 of 46) could not state their
physicians’ reason for admission
 Coronary artery disease (n=1), hypertension (n=2),
sigmoid mass (n=1), and stage IV cholangiocarcinoma
(n=1).
 Discordance among patient- and physician-stated
reason for admission was common (37%)
 E.g. patient: “Can’t speak”; chart: “Atrial tachycardia”
Encouraging Patient Autonomy From Theory to
Practice: Z. Berger, Berman Seminar, 2/27/2012
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28. Patient experience in the hospital:
a study in progress
 N=20 patients admitted to the hospitalist service at JHH
 Mixed methods study
 combination of narrative and conversation analysis (qualitative)
 existing communication coding systems (quantitative)
 Aims
 Characterize communication between physicians and hospital
patients
 Determine the exercise of and influences on inpatient autonomy as
determined by their participation in decision-making,
 specify the nature of relationships between inpatients and their
physicians
 identify opportunities for greater exercise of patient autonomy
through enhanced communication and relationships.
Encouraging Patient Autonomy From Theory to
Practice: Z. Berger, Berman Seminar, 2/27/2012
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29. Transcript excerpt 1: Patient’s role
in the plan of care
 Research Assistant: And is there anything you think should be done that’s
different from what the doctor said or do you pretty much agree?
 Patient: I agree, it’s a shock to me. I didn’t know this was going on but, yes
they need to explain more to patients, that’s anywhere, because I was really
misled from a couple, from one, that’s why I went to different hospitals,
because it seems like they couldn’t tell me what was going on with me, they was
telling me everything but what was going on and, I don’t know.
 Research Assistant: Ok, and what about here, since you got here…and
through the emergency room and everything?
 Patient: I couldn’t believe they didn’t have pencils for me to write numbers
down. She told me they had to bring their own pencils. And there was only 1
doctor I got into with since I’ve been here and that was a woman. And I told
her she was very cold-hearted, evidently she must not be a mother, or a
grandmother or a child of God because to treat somebody like that that’s
sick, she didn’t know me from Adam and Eve and she just kept telling me
what she had to do by the rules and I was telling her what I’m
experiencing, what I’m feeling and I’m 49 years old.
Encouraging Patient Autonomy From Theory to 29
Practice: Z. Berger, Berman Seminar, 2/27/2012

30. Transcript excerpt 2: Patient’s role
in the plan of care
Research Assistant: Have there been any changes since we
last spoke about the plan for your care when you’re here.
Patient: Yea. Yesterday they told me I was supposed to get an
MRCP, today they’re telling me they want to give me a CAT
scan. And then a woman doctor came in this morning with
another man and said ‘ok, you’re going to be drinking a
barium solution’ which is what I’ve done in the past.
Third Party (Mom): With the CAT.
Patient: Yes. And then I wake up and everyone in the
world is here, and the doctors say ‘no you’re not going
to drink anything you’re just going to get an
injection.’…I have no idea what they’re talking about.
Encouraging Patient Autonomy From Theory to
Practice: Z. Berger, Berman Seminar, 2/27/2012
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31. Transcript excerpt 3: Patient views
of autonomy
 Research Assistant: And how do you feel specifically
today about how people, how the doctors are involving you
in decisions?
 Patient: Um, I feel like I’m not really involved at all,
unless I say I just want to talk to my specialist and
then everything gets put on pause.
 Research Assistant: And do you wish you were a bit more
involved?
 Patient: Yea. I mean I wish involved with communication.
Maybe you should start writing stuff down mom. You
know, somebody should start writing stuff down, what they
say.
Encouraging Patient Autonomy From Theory to
Practice: Z. Berger, Berman Seminar, 2/27/2012
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32. Conclusion: Encouraging the
exercise of autonomy
 Educating housestaff/attendings to recognize
opportunities for empathy (encouraging relational
autonomy)
 Creating opportunities for patients to discuss their
second-order preferences
 Recognize the variety of patients’ approaches to
decisional autonomy
Encouraging Patient Autonomy From Theory to
Practice: Z. Berger, Berman Seminar, 2/27/2012
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33. Acknowledgments
Funders
 Osler Center for Clinical Excellence at Johns Hopkins
 Greenwall Foundation
Study team
 Mary Catherine Beach
 Dan Brotman
 Heather Dark
 Amanda Bertram
 Maggie Neely
 Physicians, patients, nurses on the hospitalist service
Encouraging Patient Autonomy From Theory to
Practice: Z. Berger, Berman Seminar, 2/27/2012
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