1. Partnering with Patients to Improve Safety: The Patient TIPS experience Sigall K. Bell, MD Arnold P. Gold Professorship, Beth Israel Deaconess Medical Center Director, Patient Safety and Quality Initiatives, Institute for Professionalism and Ethical Practice, Boston Children’s Hospital Harvard Medical School With generous support from: The Schwartz Center

2. A pilot program… Food for thought  Background/rationale  Focus groups  Workshop experiences  Survey results  What we learned

3. Why TIPS?  Experts and advocates recommend involving patients/families in safety efforts, but to date robust partnerships have been few Can patients help clinicians hone communication skills?  Voices that most need to be heard are often those least likely to speak Safe space for patients and others to practice?  The learning environment can be a test bed for the changes we want to see in the clinical setting Improved communication Patient/family empowerment Action steps: more robust collaborations with patients/family  Patients/families and clinicians experience disclosure differently; can we close the gap?

4. What is Patient TIPS?  IPEP – 2000 interprofessional clinicians in communication skills training for difficult conversations  A new paradigm: Bring patients/family into medical error disclosure and prevention training sessions  “One room schoolhouse” – deconstructed hierarchy  Pedagogy:  Live simulations and debrief  Video trigger clips  “Spectrum” of case vignettes including speaking up  Integrating clinician and patient views “None of us is as smart as all of us” --Japanese proverb

5. Objectives 1.To improve communication with patients and family when things go wrong 2.To enhance interprofessional perspectives to improve patient safety 3.To test a new model for collaborative learning using patient/family-educators in medical error disclosure and prevention training

6. First steps  2 PFAC focus groups  Voluntary recruitment to participate Patient and Family Advisory Panel  Orientation meetings Comfort, barriers Principles of collaborative learning Cases Personal “time outs” Evaluation strategy and input “What would success look like?”  Participant list: Precautions re: pre-existing therapeutic or other relationship prior to the workshop

7. Projected benefits of learning intervention Providers  “See patients as people, not parts”  “Understand patient and family priorities”  “Hear perspective of patients and families, and how HCPs sound to us” Patients/family  “It would help us look at possibilities to educate and empower families and patients”  “Understand the limitations of health care professionals”  “It is helpful to be a part of developing a solution; it is healing to use your own experience to help others”

8. Workshop experiences

9. Mrs. Hathaway  A 45 year old woman is admitted to oncology following lysis of adhesions for a small bowel obstruction. She has a history of endometrial cancer, currently in remission following surgical resection and chemotherapy two years ago.  The intern orders a morphine PCA at 5.0 mg/hr (using prohibited trailing zeros) and text pages the resident that orders are in for review.  At the bedside, the nurse asks the intern why he wrote for so much morphine. He replies that the patient has a high tolerance for opioids and that she required multiple boluses in the PACU before coming back to the ward.  The husband is at the bedside, concerned about the tense communication between his providers and wonders if the plan is clear, and whether he should say something…

10. Mrs. Hathaway  The nurse, not primed to see the decimal point because of a prohibited trailing zeros policy, begins the infusion at 50 mg/hr.  The nurse in training notices the high dose, but thinks there must be something she doesn’t know, and doesn’t say anything.  Three hours later, the nurse responds to an alarm from the room and finds the patient not breathing. She calls a code. When the code leader learns that the patient is on a morphine infusion, she stops the infusion and orders naloxone, to reverse its effects.  The patient responds and begins to breathe on her own. She is transferred to the ICU for monitoring and observation. By early that evening she is doing well, sitting up in a chair, and expected to make a full recovery.  The team considers what to say to the patient.

11. Case discussion  What struck you?  How should this team approach the conversation with the patient and her husband?  Learning opportunities?

12. enactment  Team huddle  Disclosure conversation with patient and husband  Debrief  (video trigger tool)

14. How did it go?

15. Team Disclosure: The Nurses’ Perspective  Nurses pay heavy emotional toll - nightmares, fear, guilt, and stress from even minor errors  Nurses fear being “thrown under the bus” by physicians in disclosure conversations  Nurses “walk on eggshells” during pre-disclosure period  Physicians can avoid the patient & family, nurses cannot Shannon et al. Jt Comm J Qual Patient Saf 2009;35:5

16. Case discussion  What struck you?  How should this team approach the conversation with the patient and her husband?  Learning opportunities?

17. Trailing zero Policy – penetrance Nurse’s dose inquiry 10x intended dose of morphine Nurse in training bystander Family member bystander Pharmacy Ensuring adequate supervision Speaking Up: A Hole in the Swiss Cheese? “Text page” To resident

18. Enactment – patient comments “[The enactment] was particularly meaningful in that it allowed me to see the other side- first hand. I learned so much from watching the physician and staff walk through a prep session and it really changed my own understanding of what goes on on the other side. I also felt the debrief was an important aspect of the exercise since it gave the patient a voice and we were able to provide insights as to how it feels to be on the receiving end of difficult news.” -- A patient

19. Results  3 workshops at 2 hospitals  trained about 65 doctors, nurses, social workers, interpreters, patients and family members in medical error disclosure and patient safety collaboration  Practice commitments  Pre/post survey response rate: 53/55 (96%) clin; 71/88 (81%) pts – baseline; 96% clin and 9/9 (100%) patients/family post

20. Worries/Fears  Clinicians: Recognition of physicians’ imperfections “They learn just how fallible we are” “They will lose confidence in provider/ other care givers.” “Hearing ways we have harmed and/or disappointed them when giving care.”  Interpersonal dynamics during the workshop “Falling into traditional roles” “Saying the wrong thing and causing the patient family discomfort” “People aren't going to say what they truly feel based on who is in the room or [things will] get very tense with a lot of conflict.”  None (38%)  Patients: defensive posturing, disrespectful communication by clinicians, None (56%)  (What was surprising? “That it is possible”… “The respect that I felt”)

22. Results  100% patients, 84% clinicians felt comfortable discussing errors  96% clinicians reported patient/family participation was valuable to their learning  3-month follow-up: 79% clinicians report more collaborative patient interactions; 100% patients reported the same

23. What specifically was valuable (clinicians)?  Insights into the Patient and family experience “Perspectives that we don't usually get. I don't really know what patients are really feeling.” “Somehow, even though we are all patients at some point, as health care workers we often lose the capacity to see things as a patient… Having them there reminded us of the perspective.” “Family and patient feedback in a non-clinical safe situation provided great insights I don't normally have access to”  Communication skills/nature of learning intervention “Opportunity to discuss areas of mutual vulnerability”. “It made the session have an air of real transparency” “The importance of trust and honesty”.

24. What specifically was valuable (patients/family)  Emotional impact and insight in the clinician’s experience “How they feel when a medical error happened to one of their patients, I had never heard medical people acknowledge feeling before.”  Accountability after medical error “How they see their own responsibility and how they make look at stakeholdership differently.”  New appreciation for clinicians “Their honesty and self-reflection and their sharing of both.”

25. Spectrum of cases: Speaking up

26. How inclined would you be to speak up about the breach in sterile technique if the clinician was a … Clinician (Mean, SD)Patient/Family (Mean, SD) PrePostp-ValuePrePostp-Value Nurse4.44 (0.69)4.69 (0.51).0104.44 (0.88)5.00 (0.00).095 Resident4.44 (0.63)4.70 (0.51).0064.44 (0.73)4.89 (0.33).169 Junior faculty physician 4.29 (0.81)4.62 (0.58).0124.33 (1.00)5.00 (0.00).081 Division Chief 3.95 (1.17)4.45 (0.86).0074.00 (1.23)4.89 (0.33).035

27. Participant comments  “[I learned about] the collective wisdom of ‘us,’ and the ‘us’ includes patients.” – A nurse  “My perspective regarding my role as a patient has also shifted and I no longer see myself as the recipient of care but rather an equal partner in my care. –A patient  “I see how much health care providers worry about error and how hard it is to talk about it.” --A patient  "Very realistic. Allowed me to consider how I would react in real life" – A resident  “ I find myself thinking about the workshop everyday… it seems to come up in my day to day encounters and makes me think differently about things.” -- A patient  "How simple some interventions are that help patients and families" – A clinician  “It wasn't just the workshop, it was the whole process. The focus groups and prep meetings, we were asked questions we've never been asked before.” – A patient  “I had never heard medical people acknowledge feelings before” – A patient

28. Conclusions  The model is feasible and effective  Collaborative learning enhances concordance of views: Even with motivated volunteer clinicians and patients, important differences in baseline perspectives, and patient/provider views come closer together after training  Speaking up is a common safety challenge for clinicians and patients Patient stories – a universal thread…? Educational interventions, unique metrics needed

29. Acknowledgement Patient TIPS Team:  William Martinez  David Browning  Pam Varrin  Barbara Sarnoff Lee  Elana Premack Sandler  BIDMC and CHA PFAC Advisors  IPEP faculty; Allyson McCrary  With generous support from the Schwartz Center