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. 2021 Mar 15;181(5):652–660. doi: 10.1001/jamainternmed.2021.0152

Table 2. Topic and Example Questions From Interview Guidesa.

Broad topic Specific topics Example questions
Patient
Lead-in questions
  1. Diagnosis of cirrhosis, past experiences

  2. Present illness

  1. Can you tell me about how you became diagnosed with cirrhosis and what that experience was like?

  2. If you had to pick 2-3 concerns you have about your experience with cirrhosis, what would they be?

ACP: main questions
  1. Prognosis

  2. Surrogate decision-making

  3. Health care preferences

  4. Values and goals

  5. Documentation

  1. Have you thought about what may happen to you if you were not a candidate for a liver transplant? Has this ever been brought up?

  2. As you know, there are instances regarding your cirrhosis where you can get so sick that you may be unable to make medical decisions for yourself. Have you had discussions with your loved ones or medical team about who can specifically make medical decisions for you if that were to happen? What were those discussions like?

Probes
  1. Barriers

  2. Facilitators

  3. Preferences

  1. What are some reasons why you do not think that happens?

  2. What made it easier for you to do?

  3. How would you feel if someone from the medical team talked to you about that?

Clinician
Lead-in questions
  1. Job description and context

  1. Given that clinician roles can vary across institutions, can you start by telling me a little bit about how you spend your professional time at the liver transplant center and the role you play in treating patients with cirrhosis?

ACP: main questions
  1. Prognosis

  2. Surrogate decision-making

  3. Health care preferences

  4. Values and goals

  5. Documentation

  1. Can you describe a typical conversation you will have with patients with decompensated cirrhosis about certain medical emergencies or events that can happen in the future? Can you explain any conversations you may have regarding a patient’s chance of dying?

  2. In what way do discussions about assigning a health care decision maker come up in the care of these patients?

  3. Do discussions with patients about advance directives or POLST forms regarding their medical care ever come up?

Probes
  1. Barriers

  2. Facilitators

  3. Preferences

  1. What are some reasons why you think it may not happen?

  2. What makes the conversation easier?

  3. What are some ways you believe we can improve this?

Abbreviations: ACP, advance care planning; POLST, Physician Orders for Life-Sustaining Treatment.

a

Adjustments in wording were made between interviews.