1. Zackary Berger, MD, PhDJohns Hopkins School of MedicineBerman Institute Seminar SeriesFebruary 27, 2012

2. Autonomy: uncontroversial inprinciple Standard view (Schneider): The physicians role is to use training etc. to provide patient with factsand alternative treatments The patients role is to provide the values to evaluate alternatives and select the one that is bestEncouraging Patient Autonomy From Theory toPractice: Z. Berger, Berman Seminar, 2/27/2012 2 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, 2/27/20123 4. Encouraging Patient Autonomy From Theory toPractice: Z. Berger, Berman Seminar, 2/27/2012 4 5. How is autonomy exercised inpractice? I dont 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 preferencesEncouraging Patient Autonomy From Theory toPractice: Z. Berger, Berman Seminar, 2/27/2012 5 6. Broader definitions of autonomy Decisional autonomy Taking part in medical decision-making The autonomy to choose autonomy (second-orderautonomy; G. Dworkin) Relational autonomy Autonomy is never exercised in isolation Social support and recognition of the persons statusaffect her capacities for self-trust, self-esteem, and self-respect which in turn affect her ability to exercise autonomyEncouraging Patient Autonomy From Theory toPractice: Z. Berger, Berman Seminar, 2/27/2012 6 7. Patients are various Actual situations can force one to reconsider themeaning or content of a concept The thick description of a situation can inform andmodify ethical rulesEncouraging Patient Autonomy From Theory toPractice: Z. Berger, Berman Seminar, 2/27/2012 7 8. Encouraging autonomy in clinic andin the hospitalEncouraging Patient Autonomy From Theory toPractice: Z. Berger, Berman Seminar, 2/27/2012 8 9. One aspect of autonomy in theclinic: setting the agendaEncouraging Patient Autonomy From Theory toPractice: Z. Berger, Berman Seminar, 2/27/2012 9 10. Who controls the conversations? Encouraging Patient Autonomy From Theory to Practice: Z. Berger, Berman Seminar, 2/27/201210 11. Encouraging Patient Autonomy From Theory toPractice: Z. Berger, Berman Seminar, 2/27/2012 11 12. What is supposed to happen? Allow patient to tell story Dont interrupt Probe to exhaustion Is there anything else? Set explicit agendaEncouraging Patient Autonomy From Theory toPractice: Z. Berger, Berman Seminar, 2/27/2012 12 13. How do physicians elicit patientconcerns and set an agenda for theclinic visit?Encouraging Patient Autonomy From Theory toPractice: Z. Berger, Berman Seminar, 2/27/2012 13 14. Study Design, Population, and Setting Study Design Quantitative and qualitative analyses of data from theEnhancing Communication and HIV Outcomes(ECHO) Study Study Population 45 HIV providers and 423 patients Setting 4 HIV specialty care sites in Baltimore, Detroit, NewYork, PortlandEncouraging Patient Autonomy From Theory toPractice: Z. Berger, Berman Seminar, 2/27/2012 14 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 2encounters per provider (66 encounters total) At 4th site (Detroit) a nurse started each visit, thus notrelevant to our aimsEncouraging Patient Autonomy From Theory toPractice: Z. Berger, Berman Seminar, 2/27/2012 15 16. Opening of the VisitType of Opening Frequency ExampleTotal N=66General Open Question 41How are youLeading Question7 Everything okay?Solicitation of 1 Tell me, is there anything that youconcerns/priorities wanted to discuss today, inparticular?Atypical (no opening17--question) Encouraging Patient Autonomy From Theory to Practice: Z. Berger, Berman Seminar, 2/27/201216 17. Patient ResponseType of Response Frequency Example Total N=49General30FineSpecific Concern 14My legs are hurting meSequence interrupted (no 5 --response)Encouraging Patient Autonomy From Theory toPractice: Z. Berger, Berman Seminar, 2/27/2012 17 18. Further Solicitation of ConcernsType of ResponseFrequencyExampleTotal N=44Probing to exhaustion 12 Is there anything else?No further probing32 -- Encouraging Patient Autonomy From Theory to Practice: Z. Berger, Berman Seminar, 2/27/201218 19. Agenda StatementsType of Agenda FrequencyExampleStatementTotal N=66None 40 ---Physician-directed 20 D: Youre here because we wanted tojump on your blood pressurePatient-directed 3P: So you want to do the blood workfor my CD4 count and viral load. Canyou check me for, um, is there bloodwork for diabetes?).Collaborative3D: Okay. Anything else goin on?P: Uh, not really. I think Im socentered on the pain thing that I,thats my focal point nowD: Well lets make a priorityEncouraging Patient Autonomy From Theory toPractice: Z. Berger, Berman Seminar, 2/27/2012 19 20. Generic opening questions dontsolicit 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, 2/27/201220 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 toPractice: Z. Berger, Berman Seminar, 2/27/2012 21 22. Agendas are not often explicitlystated When an agenda is stated, it tends to center onphysicians priorities Negotiation of the visit agenda between patient andprovider is rareEncouraging Patient Autonomy From Theory toPractice: Z. Berger, Berman Seminar, 2/27/2012 22 23. Ways to encourage autonomy inclinic Give patients the explicit opportunity to state their priorities Discuss (negotiate) with them the agenda for the visitEncouraging Patient Autonomy From Theory toPractice: Z. Berger, Berman Seminar, 2/27/2012 23 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 asHow are you? is not always interpreted by the patientas an opportunity to express their concerns Patients should be empowered to express their concernsand negotiate the agendaEncouraging Patient Autonomy From Theory toPractice: Z. Berger, Berman Seminar, 2/27/2012 24 25. Autonomy in the hospital:understanding communicationEncouraging Patient Autonomy From Theory toPractice: Z. Berger, Berman Seminar, 2/27/2012 25 26. Encouraging Patient Autonomy From Theory toPractice: 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 theirphysicians 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-statedreason for admission was common (37%) E.g. patient: Cant speak; chart: Atrial tachycardiaEncouraging Patient Autonomy From Theory toPractice: Z. Berger, Berman Seminar, 2/27/2012 27 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 toPractice: Z. Berger, Berman Seminar, 2/27/2012 28 29. Transcript excerpt 1: Patients rolein the plan of care Research Assistant: And is there anything you think should be done thatsdifferent from what the doctor said or do you pretty much agree? Patient: I agree, its a shock to me. I didnt know this was going on but, yesthey need to explain more to patients, thats anywhere, because I was reallymisled from a couple, from one, thats why I went to different hospitals,because it seems like they couldnt tell me what was going on with me, they wastelling me everything but what was going on and, I dont know. Research Assistant: Ok, and what about here, since you got hereandthrough the emergency room and everything? Patient: I couldnt believe they didnt have pencils for me to write numbersdown. She told me they had to bring their own pencils. And there was only 1doctor I got into with since Ive been here and that was a woman. And I toldher she was very cold-hearted, evidently she must not be a mother, or agrandmother or a child of God because to treat somebody like that thatssick, she didnt know me from Adam and Eve and she just kept telling mewhat she had to do by the rules and I was telling her what Imexperiencing, what Im feeling and Im 49 years old. Encouraging Patient Autonomy From Theory to29 Practice: Z. Berger, Berman Seminar, 2/27/2012 30. Transcript excerpt 2: Patients rolein the plan of careResearch Assistant: Have there been any changes since welast spoke about the plan for your care when youre here.Patient: Yea. Yesterday they told me I was supposed to get anMRCP, today theyre telling me they want to give me a CATscan. And then a woman doctor came in this morning withanother man and said ok, youre going to be drinking abarium solution which is what Ive done in the past.Third Party (Mom): With the CAT.Patient: Yes. And then I wake up and everyone in theworld is here, and the doctors say no youre not goingto drink anything youre just going to get aninjection.I have no idea what theyre talking about. Encouraging Patient Autonomy From Theory to Practice: Z. Berger, Berman Seminar, 2/27/201230 31. Transcript excerpt 3: Patient viewsof autonomy Research Assistant: And how do you feel specificallytoday about how people, how the doctors are involving youin decisions? Patient: Um, I feel like Im not really involved at all,unless I say I just want to talk to my specialist andthen everything gets put on pause. Research Assistant: And do you wish you were a bit moreinvolved? Patient: Yea. I mean I wish involved with communication.Maybe you should start writing stuff down mom. Youknow, somebody should start writing stuff down, what theysay. Encouraging Patient Autonomy From Theory to Practice: Z. Berger, Berman Seminar, 2/27/201231 32. Conclusion: Encouraging theexercise of autonomy Educating housestaff/attendings to recognizeopportunities for empathy (encouraging relationalautonomy) Creating opportunities for patients to discuss theirsecond-order preferences Recognize the variety of patients approaches todecisional autonomy Encouraging Patient Autonomy From Theory to Practice: Z. Berger, Berman Seminar, 2/27/201232 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 serviceEncouraging Patient Autonomy From Theory toPractice: Z. Berger, Berman Seminar, 2/27/2012 33