“The Role of the Patient in Safety”

1. “The Role of the Patient in Safety” Six Recommendations Dan Ford The Seventh Annual Quality Colloquium – Harvard University August 19, 2008

2. OVERVIEW • The Ford family medical error story puts a face on unexpected outcomes • Highlights of ideas and recommendations, from the Ford family and others’ experiences • We are all consumers as patients and family members – encourage thinking as consumers • We should all be active patient safety advocates, as providers of services and products, as well as consumers

3. RECOMMENDATIONS • 1) Let’s be responsible providers of information • 2) Let’s ask questions and speak up • 3) Let’s be expectant and presumptuous • 4) Let’s be encouraging and supportive • 5) Let’s participate with providers and become involved • 6) Let’s encourage an openness to other new ideas

4. LET’S BE RESPONSIBLE PROVIDERS OF INFORMATION • As patients, let’s know, document and update our medical history, active medications and our allergies. • Understand that medication improper usage, over-use, misuse and hand-off’s are huge source of medication errors worldwide.

5. LET’S BE RESPONSIBLE PROVIDERS OF INFORMATION • Active participation implies sharing information and opinions, joint problem solving and joint responsibility. (Patrice Spath) • Bring literacy issues to attention of providers. In the U.S., over 90 million have literacy challenges. • Patients provide a second set of eyes. (Merrilyn Walton, Australia)

6. LET’S ASK QUESTIONS AND SPEAK UP • “Speak Up” program. Joint Commission suggests that patients self-educate about diagnosis, medical tests, treatment plans. • Find out who we can talk with regarding anxieties, concerns about our care. Tell someone to stop if it doesn’t feel right.

7. LET’S ASK QUESTIONS AND SPEAK UP • Don’t be intimidated. • “Doctor, did you wash your hands?” • Ask about anesthesia, IV drips, special tests, x-rays with dyes, etc. • Insist on full disclosure. We have a right to know exactly what happens to our body. “Nothing about me without me.”

8. LET’S ASK QUESTIONS AND SPEAK UP • When visiting a doctor or hospital, invite a family member, friend, patient advocate, navigator or vigilant partner to help. • Help those who have no such advocate. • Ask for medication sheets, help caregivers cross-check medications, receive tips about safe medication practices.

9. LET’S ASK QUESTIONS AND SPEAK UP • Find out how infections occur, early symptoms and avoiding, treatment and prevention plans. • We can monitor for compliance with safe practices, including medication administration, AFTER our patient identification is verified.

10. LET’S ASK QUESTIONS AND SPEAK UP • Don’t be afraid to beg and be persistent. (Dale Micalizzi, New York) • We can be too easily intimidated by providers from actively participating in our own care -- encourage and work on our right to question and to challenge. • Again….speak up!

11. LET’S BE EXPECTANT AND PRESUMPTUOUS • The patient is the center of the health care team. • We are all consumers, as patients or family members, at some point. • Picker Institute Europe suggests that patients desire respect ….

12. LET’S BE EXPECTANT AND PRESUMPTUOUS • .…Respect for our values, preferences and expressed needs, information and education, access to care, emotional support, involvement of family and friends, continuity and for transition, physical comfort and coordination. • We should expect these to be honored, at all times. • “Patients can become the first line of defense, against misadventures and unsafe situations.” (Merrilyn Walton, Australia)

13. LET’S BE EXPECTANT AND PRESUMPTUOUS • Expect our privacy and confidentiality be honored at all times • Expect current, evidenced-based medicine, unless logical and convincing reasons for other approaches • If a mistake happens without our knowledge, even without harm, we should be told -- ethical thing to do.

14. LET’S BE EXPECTANT AND PRESUMPTUOUS • OUTRAGED by too many continuing medical errors – let’s work with providers to eliminate them. • Expect candor, honesty, disclosure and transparency to be the norm. • No longer accept being treated as numbers, statistics, nameless. • We are people with families, victims, survivors and change agents • Let’s expect listening to be the norm – when missing, is at the heart of many problems.

15. LET’S BE EXPECTANT AND PRESUMPTUOUS • Accountability by providers to patients may help to balance the unequal distribution of power between a physician and injured patient. (Nancy Berlinger) • Accountability is the lynchpin in the relationship. • Expect and encourage providers to do the right thing, when things go wrong - including taking responsibility for their own actions.

16. LET’S BE EXPECTANT AND PRESUMPTUOUS • Hurting patients are not interested in hearing about hospitals protecting assets. Lack of respect. • We have a need to be heard. There is a need for closure – including an honest and candid understanding of what happened, apologies, what is being done for prevention in the future.

17. LET’S BE ENCOURAGING AND SUPPORTIVE • Let’s encourage providers to become patient centric, rather than physician centric. • Providers can better plan and deliver care, and we can achieve better outcomes • by truly partnering with patients and families • by involving us in decisions about our own care • by gaining the benefit of our help and insights • By having in-depth conversations with patients, from the beginning of the relationship and in the hospital • Hospitals can also improve staff satisfaction.

18. LET’S BE ENCOURAGING AND SUPPORTIVE • Patient and Family Advisory Councils are being formed -- I chaired the “Patient Role in Safety” Sub-Committee of AzHHA Patient Safety Steering Committee. • Encourage providers to tell the truth, when unexpected outcomes happen, and to apologize. • Culture has to start at the top of every hospital. • Needs to be the right spirit and “a fire in our belly” for telling the truth. • Even when telling the truth and being candid takes us out of our comfort zone.

19. LET’S BE ENCOURAGING AND SUPPORTIVE • The bedside nurse can still be the patient’s best advocate. • Patient loads, stress and human frailties get in the way, • Let’s remember and enhance the nurse advocacy and partnering role. • Let’s assure this is taught in training – patient centered language and behavior

20. LET’S BE ENCOURAGING AND SUPPORTIVE • Lucian Leape from Harvard suggests: “Let’s help the clinician do the right thing, rather than chastising them for not.” • Encourage providers to understand the “Deer in the Headlights Syndrome” when unexpected outcomes happen. • Patients and families are suffering terribly following these events, • We are in shock – devastated in many ways.

21. LET’S BE ENCOURAGING AND SUPPORTIVE • Providers also go through “Deer in the Headlights” syndrome, when experiencing unexpected outcomes. • Physicians and nurses and others did not wake up this morning, with the intent or anticipation of hurting someone today. • They are also often in shock or grief. • Need support for all.

22. LET’S BE ENCOURAGING AND SUPPORTIVE • Let’s encourage providers to never forget the HUMAN side. • Role model that as patients and family members. • Every patient experience requires COMPASSION and empathy. • Significant efforts are being made to deal with the clinical and system pieces. But….we find the human part to be awkward. • Let’s encourage, support providers to be team players – that all be good wingmen

23. LET’S BE ENCOURAGING AND SUPPORTIVE • ARROGANCE, parental attitudes, turf battles by some clinicians continue – stymies progress and change in delivering care • All are human beings, w/human needs – patients, family members and staff – respect everyone’s dignity and roles. • Cold and unfeeling attitudes build barriers. Genuine listening will help break them down. • It’s about mutual respect – communications and teamwork – need to rebuild trust.

24. LET’S BE ENCOURAGING AND SUPPORTIVE • Empathize with providers that involving patients and families is not easy. This is a journey in a new direction. • Understand that engagement is key, as well as a new learning experience. • Humbled, supportive and complimentary of all of the good progress being made, even as providers weary from all now on their plates. • Respect and encourage champions who work tirelessly for change – many are here today

25. LET’S PARTICIPATE WITH PROVIDERS AND BECOME INVOLVED • Let’s volunteer to participate on provider patient safety, quality and patient-centered care boards and committees, as well as self help groups – such as MITSS here in Boston (Linda Kenney) • Dana Farber Cancer Institute in Boston involves patients and family members on virtually every committee and board in the hospital. • Our voices, as patients and consumers, can be heard in many venues.

26. LET’S PARTICIPATE WITH PROVIDERS AND BECOME INVOLVED • In my committee work, I remind providers that I am not a clinician. Typical response: “We have enough clinical experts around the table. We want to hear your voice and ideas, as a consumer. Question us, ask us, encourage us.” • Many people like me – would love to be positive and constructive committee and advisory board members – eager to serve, learn and be good ambassadors.

27. LET’S PARTICIPATE WITH PROVIDERS AND BECOME INVOLVED • Patients and family members worldwide are becoming involved in consumer and patient advocate organizations. • Desire is to PARTNER – to work cooperatively/constructively with providers regarding patient and family-centered care, as well as patient safety and the aftermath of medical errors.

28. LET’S PARTICIPATE WITH PROVIDERS AND BECOME INVOLVED • May, 2006, “Patients for Patient Safety” Workshop in San Francisco, sponsored by WHO/PAHO. • 54 participants from South America, Mexico, Canada and United States – profound experience – followed the inaugural WHO workshop in London in December, 2005, with 24 participants. • Similar Workshop in Chicago in June, 2008 – consumers and providers – Chicago area focus.

29. LET’S PARTICIPATE WITH PROVIDERS AND BECOME INVOLVED • STORYTELLING by patients and families – presentations, personal contact, in writing. • Important to help leadership spawn change. • Injured patients and those who have lost loved ones to medical errors can share their stories • Providers need to hear – are inviting these stories – catalyst for causing change. • Providers may weary of the stories. WE HOPE NOT!

30. LET’S PARTICIPATE WITH PROVIDERS AND BECOME INVOLVED • Let’s help the healing process, for all – patients, families and providers. • Rounding – some organizations are now inviting patients and families to take part in multi-disciplinary rounds and asking for their comments.

31. LET’S ENCOURAGE AN OPENNESS TO OTHER NEW IDEAS • Medical records – assure that patients and families have access to the entire medical record – spirit of information availability and transparency. • Incorporate and invite input from patients and families directly into medical and health records. • Not to change what is written by providers, but…. • To supplement. We should be able to provide our own notes in the record.

32. LET’S ENCOURAGE AN OPENNESS TO OTHER NEW IDEAS • Partnership in the healing process is absolutely essential. • Dr. Saul Weingart and colleagues at Dana Farber and Harvard University – as well as others nationally, are conducting substantive studies on patient and family involvement.

33. LET’S ENCOURAGE AN OPENNESS TO OTHER NEW IDEAS • Sarah Lawrence College in New York offers a master’s degree in patient advocacy. • RCA’s – involve patients/family when debriefing unexpected outcomes and problem solving. • Invite patients and families to participate in RCA’s, and other clinical investigations – not all will want to participate, nor should be. • Do away with classical CYA attitudes. • Offensive to be left out of discussions about what really happened – it is our body.

34. LET’S ENCOURAGE AN OPENNESS TO OTHER NEW IDEAS • RETICENCE – legal considerations, tradition, change, peer review, role behaviors, ego’s and other human behaviors. • Telling the TRUTH is the right thing to do. Openness will enhance learning all around – will decrease, rather than increase, litigation. • Continued tension between the fear of litigation and transparency/telling the truth.

35. LET’S ENCOURAGE AN OPENNESS TO OTHER NEW IDEAS • Instead of a divisive spirit, with on-going care and when unexpected outcomes happen, let’s be PEACEMAKERS. • “But the wisdom that comes from heaven is first of all pure; then peace-loving, considerate, submissive, full of mercy and good fruit, impartial and sincere. Peacemakers who sow in peace raise a harvest of righteousness.” James 3:17-18 • We are each human beings – need each other. • Know the Bible is not the source of everyone’s faith, but the spirit of this is universal.

36. This is why I do what I do… Grandpop and Jadyn – April 2008

37. Dan Ford Biography • Spouse suffered permanent brain damage/short-term memory loss because of medical errors in an Illinois hospital – a patient and patient safety advocate. • Health Care Executive Search Consultant with Furst Group, Phoenix, Arizona – concerned about how all provider executive candidates view the patient experience. • www.furstgroup.com • dford@furstgroup.com • 520.548.3339 (cell)