Zackary Berger, MD, PhDJohns Hopkins School of Medicine  Berman Institute Seminar Series                February 27, 2012
Autonomy: uncontroversial inprinciple Standard view (Schneider):    “The physician’s role is to use training etc. to pro...
…so we can remove impedimentsto autonomy and let patientspractice it “[Once] impediments [to autonomy] are gone, [it is a...
Encouraging Patient Autonomy From Theory toPractice: Z. Berger, Berman Seminar, 2/27/2012                                 ...
How is autonomy exercised inpractice? “I don’t know anything, how am I supposed to decide?” “Mandatory autonomy”    We ...
Broader definitions of autonomy Decisional autonomy    Taking part in medical decision-making The autonomy to choose au...
Patients are various Actual situations can force one to reconsider the  meaning or content of a concept The thick descri...
Encouraging autonomy in clinic andin the hospital                  Encouraging Patient Autonomy From Theory to            ...
One aspect of autonomy in theclinic: setting the agenda                Encouraging Patient Autonomy From Theory to        ...
Who controls the conversations?                 Encouraging Patient Autonomy From Theory to                 Practice: Z. B...
Encouraging Patient Autonomy From Theory toPractice: 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...
How do physicians elicit patientconcerns and set an agenda for theclinic visit?                  Encouraging Patient Auton...
Study Design, Population, and Setting Study Design  • Quantitative and qualitative analyses of data from the    Enhancing...
Analysis Developed themes related to    how the visit is opened    whether and how providers elicit patient concerns   ...
Opening of the VisitType of Opening         Frequency       Example                        Total N=66General Open Question...
Patient ResponseType of Response         Frequency                   Example                         Total N=49General    ...
Further Solicitation of ConcernsType of Response        Frequency                      Example                        Tota...
Agenda StatementsType of Agenda       Frequency    ExampleStatement            Total N=66None                 40          ...
Generic opening questions don’tsolicit concerns Frequently used by providers    Not effective in eliciting concerns    ...
When the doctor asks “How areyou?”“When the doctor asks, ‘How are you?’ and you say, ‘Fine,’ the doctor thinks he has gath...
Agendas are not often explicitlystated   When an agenda is stated, it tends to center on    physicians’ priorities   Neg...
Ways to encourage autonomy inclinic  Give patients the explicit opportunity to state their   priorities  Discuss (negoti...
Setting agenda: recommendations Needed: Interventions to educate physicians and patients about how to most effectively di...
Autonomy in the hospital:understanding communication                Encouraging Patient Autonomy From Theory to           ...
Encouraging Patient Autonomy From Theory toPractice: 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 admis...
Patient experience in the hospital:a study in progress N=20 patients admitted to the hospitalist service at JHH Mixed me...
Transcript excerpt 1: Patient’s rolein the plan of care Research Assistant: And is there anything you think should be don...
Transcript excerpt 2: Patient’s rolein the plan of careResearch Assistant: Have there been any changes since we  last spok...
Transcript excerpt 3: Patient viewsof autonomy Research Assistant: And how do you feel specifically  today about how peop...
Conclusion: Encouraging theexercise of autonomy Educating housestaff/attendings to recognize  opportunities for empathy (...
AcknowledgmentsFunders Osler Center for Clinical Excellence at Johns Hopkins Greenwall FoundationStudy team Mary Cather...
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Encouraging patient autonomy

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

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  • Prophylactic argument, therapeutic argument, false consciousness argument, moral argument (authenticity)
  • 18 seconds
  • Encouraging patient autonomy

    1. 1. Zackary Berger, MD, PhDJohns Hopkins School of Medicine Berman Institute Seminar Series February 27, 2012
    2. 2. Autonomy: uncontroversial inprinciple 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 2
    3. 3. …so we can remove impedimentsto autonomy and let patientspractice 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 3
    4. 4. Encouraging Patient Autonomy From Theory toPractice: Z. Berger, Berman Seminar, 2/27/2012 4
    5. 5. How is autonomy exercised inpractice? “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 5
    6. 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 persons 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 6
    7. 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 7
    8. 8. Encouraging autonomy in clinic andin the hospital Encouraging Patient Autonomy From Theory to Practice: Z. Berger, Berman Seminar, 2/27/2012 8
    9. 9. One aspect of autonomy in theclinic: setting the agenda Encouraging Patient Autonomy From Theory to Practice: Z. Berger, Berman Seminar, 2/27/2012 9
    10. 10. Who controls the conversations? Encouraging Patient Autonomy From Theory to Practice: Z. Berger, Berman Seminar, 2/27/2012 10
    11. 11. Encouraging Patient Autonomy From Theory toPractice: Z. Berger, Berman Seminar, 2/27/2012 11
    12. 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 12
    13. 13. How do physicians elicit patientconcerns and set an agenda for theclinic visit? Encouraging Patient Autonomy From Theory to Practice: Z. Berger, Berman Seminar, 2/27/2012 13
    14. 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 14
    15. 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 15
    16. 16. Opening of the VisitType of Opening Frequency Example Total N=66General Open Question 41 “How are you”Leading Question 7 “Everything okay?”Solicitation of 1 “Tell me, is there anything that youconcerns/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 16
    17. 17. Patient ResponseType of Response Frequency Example Total N=49General 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 17
    18. 18. Further Solicitation of ConcernsType of Response Frequency Example Total N=44Probing 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 18
    19. 19. Agenda StatementsType of Agenda Frequency ExampleStatement Total N=66None 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 19
    20. 20. Generic opening questions don’tsolicit 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 20
    21. 21. When the doctor asks “How areyou?”“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
    22. 22. Agendas are not often explicitlystated  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 22
    23. 23. Ways to encourage autonomy inclinic  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 23
    24. 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. 25. Autonomy in the hospital:understanding communication Encouraging Patient Autonomy From Theory to Practice: Z. Berger, Berman Seminar, 2/27/2012 25
    26. 26. Encouraging Patient Autonomy From Theory toPractice: Z. Berger, Berman Seminar, 2/27/2012 26
    27. 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 27
    28. 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 28
    29. 29. Transcript excerpt 1: Patient’s rolein 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. 30. Transcript excerpt 2: Patient’s rolein 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. Encouraging Patient Autonomy From Theory to Practice: Z. Berger, Berman Seminar, 2/27/2012 30
    31. 31. Transcript excerpt 3: Patient viewsof 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 31
    32. 32. Conclusion: Encouraging theexercise 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 32
    33. 33. AcknowledgmentsFunders Osler Center for Clinical Excellence at Johns Hopkins Greenwall FoundationStudy 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

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