Zackary Berger, MD, PhD
Johns Hopkins School of Medicine
Berman Institute Seminar Series
February 27, 2012
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”
2
Encouraging Patient Autonomy From Theory to Practice: Z. Berger, Berman Seminar, 2/27/2012
…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)
3
Encouraging Patient Autonomy From Theory to Practice: Z. Berger, Berman Seminar, 2/27/2012
Encouraging Patient Autonomy From Theory to Practice: Z. Berger, Berman Seminar, 2/27/2012
4
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
5
Encouraging Patient Autonomy From Theory to Practice: Z. Berger, Berman Seminar, 2/27/2012
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
6
Encouraging Patient Autonomy From Theory to Practice: Z. Berger, Berman Seminar, 2/27/2012
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
7
Encouraging autonomy in clinic and in the hospital
8
Encouraging Patient Autonomy From Theory to Practice: Z. Berger, Berman Seminar, 2/27/2012
One aspect of autonomy in the clinic: setting the agenda
9
Encouraging Patient Autonomy From Theory to Practice: Z. Berger, Berman Seminar, 2/27/2012
Who controls the conversations?
10
Encouraging Patient Autonomy From Theory to Practice: Z. Berger, Berman Seminar, 2/27/2012
11
Encouraging Patient Autonomy From Theory to Practice: Z. Berger, Berman Seminar, 2/27/2012
What is “supposed to” happen?
Allow patient to tell story
Don’t interrupt
Probe to exhaustion – “Is there anything else?”
Set explicit agenda
12
Encouraging Patient Autonomy From Theory to Practice: Z. Berger, Berman Seminar, 2/27/2012
How do physicians elicit patient concerns and set an agenda for the clinic visit?
13
Encouraging Patient Autonomy From Theory to Practice: Z. Berger, Berman Seminar, 2/27/2012
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
14
Encouraging Patient Autonomy From Theory to Practice: Z. Berger, Berman Seminar, 2/27/2012
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
15
Encouraging Patient Autonomy From Theory to Practice: Z. Berger, Berman Seminar, 2/27/2012
Opening of the VisitType of Opening Frequency
Total N=66Example
General Open Question 41 “How are you”
Leading Question 7 “Everything okay?”
Solicitation of concerns/priorities
1 “Tell me, is there anything that you wanted to discuss today, in particular?”
Atypical (no opening question)
17 --
16
Encouraging Patient Autonomy From Theory to Practice: Z. Berger, Berman Seminar, 2/27/2012
Patient Response
Type of Response FrequencyTotal N=49
Example
General 30 “Fine”
Specific Concern 14 “My legs are hurting me”
Sequence interrupted (no response)
5 --
17
Encouraging Patient Autonomy From Theory to Practice: Z. Berger, Berman Seminar, 2/27/2012
Type of Response FrequencyTotal N=44
Example
Probing to exhaustion 12 “Is there anything else?”
No further probing 32 --
Further Solicitation of Concerns
18
Encouraging Patient Autonomy From Theory to Practice: Z. Berger, Berman Seminar, 2/27/2012
Agenda StatementsType of Agenda Statement
FrequencyTotal N=66
Example
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”
19
Encouraging Patient Autonomy From Theory to Practice: Z. Berger, Berman Seminar, 2/27/2012
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
20
Encouraging Patient Autonomy From Theory to Practice: Z. Berger, Berman Seminar, 2/27/2012
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
21
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
22
Encouraging Patient Autonomy From Theory to Practice: Z. Berger, Berman Seminar, 2/27/2012
Ways to encourage autonomy in clinic
Give patients the explicit opportunity to state their priorities
Discuss (negotiate) with them the agenda for the visit
23
Encouraging Patient Autonomy From Theory to Practice: Z. Berger, Berman Seminar, 2/27/2012
Setting agenda: recommendations
Encouraging Patient Autonomy From Theory to Practice: Z. Berger, Berman Seminar, 2/27/2012 24
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
Autonomy in the hospital: understanding communication
Encouraging Patient Autonomy From Theory to Practice: Z. Berger, Berman Seminar, 2/27/2012
25
Encouraging Patient Autonomy From Theory to Practice: Z. Berger, Berman Seminar, 2/27/2012 26
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”
27
Encouraging Patient Autonomy From Theory to Practice: Z. Berger, Berman Seminar, 2/27/2012
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.
28
Encouraging Patient Autonomy From Theory to Practice: Z. Berger, Berman Seminar, 2/27/2012
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.
29Encouraging Patient Autonomy From Theory to Practice: Z. Berger, Berman Seminar, 2/27/2012
Transcript excerpt 2: Patient’s role in the plan of careResearch 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.
30
Encouraging Patient Autonomy From Theory to Practice: Z. Berger, Berman Seminar, 2/27/2012
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.
31
Encouraging Patient Autonomy From Theory to Practice: Z. Berger, Berman Seminar, 2/27/2012
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
32
Encouraging Patient Autonomy From Theory to Practice: Z. Berger, Berman Seminar, 2/27/2012
AcknowledgmentsFunders 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
33
Top Related