encouraging patient autonomy

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”

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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)

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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

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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

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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


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Encouraging autonomy in clinic and in the hospital

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One aspect of autonomy in the clinic: setting the agenda

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Who controls the conversations?

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What is “supposed to” happen?

Allow patient to tell story

Don’t interrupt

Probe to exhaustion – “Is there anything else?”

Set explicit agenda

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How do physicians elicit patient concerns and set an agenda for the clinic visit?

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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

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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

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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 --

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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 --

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Type of Response FrequencyTotal N=44

Example

Probing to exhaustion 12 “Is there anything else?”

No further probing 32 --

Further Solicitation of Concerns

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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”

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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

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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)


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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

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Ways to encourage autonomy in clinic

Give patients the explicit opportunity to state their priorities

Discuss (negotiate) with them the agenda for the visit

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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


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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”

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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.

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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.

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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.

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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

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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


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encouraging patient autonomy

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