1. Together is Better Presentation to the Third International Conference on Patient and Family-Centered Care Seattle, WA July 30, 2007 Rosemary Gibson

2. A Glimmer of Hope…   Since the 1999 Institute of Medicine report, To Err is Human, there has been unprecedented growth in the number of patients and families who are working with health care professionals to improve quality and safety   The number is small but growing

3.   What accounts for this growth?   There is urgency for improvement because people are being harmed   The public and health care professionals have begun to see the human face of harm, and it is creating the will to change

9.   Before we can work together, as health care professionals we have to see patients and families in a new way   First, something so fundamental about ensuring the dignity of people…

11. Down With the Gown

12. 3 Opportunities for Providers and Patients/Families to Work Together   Ensuring safe and high quality care for the individual patient   Working to improve quality and safety at the organizational level   Advocating as citizens for greater accountability for health system performance

13. Opportunities for Providers and Patients/Families to Work Together 1. Ensuring safe and high quality care for the individual patient

14. Extraordinary Work… The New Frontier in Health Care   End-of-life family conferences   Family-centered rounds   Direct access to rapid response teams by patients and families   Shared decision making about treatment options, e.g. hysterectomy, back pain

15. Opportunities for Providers and Patients/Families to Work Together 2. Working to improve quality and safety at the organizational level

18. A Better Way   Patients and families are working with health care organizations a develop better ways to respond to adverse outcomes

19. Progressive Organizations Are Changing Culture Around Disclosure   University of Illinois interviewed 16 law firms in Cook County on how they would handle a case of wrong site surgery   12 of the firms said they could get the hospital “off the hook”   4 of the firms said the hospital has to tell the patient; U of I will contract with one of these 6 law firms.

20. Progressive Organizations Are Changing Culture Around Disclosure   They meet with patients, apologize, and provide a remedy whether patients want to file a claim or not; they do a root cause analysis and implement improvements   The centralized billing office puts a hold on all billing in the case of an error   The first big case was the preventable death of a kidney donor; within 90 days the case was settled for $6.7 million

21. Guiding Principles   When we hurt someone through unreasonable medical care we need to make it right   When the care our staff provides is reasonable, we need to support them   We need to learn something from medical errors that will help us to improve our care

22. Progressive Organizations Are Changing Culture Around Disclosure   Families who have experienced an error or adverse outcome continue to seek care there   Malpractice insurance premiums have declined

23. Patient and Family Wishes in the Aftermath of Error   Disclosure/truth telling   Non-abandonment   Non-abandonment of the clinicians involved in inadvertent errors   Find the root cause and prevent the same error from happening again

24. “ A (patient) is the most important visitor on our premises. He is not dependent on us. We are dependent on him. He is not an interruption in our work. He is the purpose of it. He is not an outsider in our business. He is part of it. We are not doing him a favor by serving him. He is doing us a favor by giving us an opportunity to serve him.” Gandhi “ A (patient) is the most important visitor on our premises. He is not dependent on us. We are dependent on him. He is not an interruption in our work. He is the purpose of it. He is not an outsider in our business. He is part of it. We are not doing him a favor by serving him. He is doing us a favor by giving us an opportunity to serve him.” Gandhi

25. CNO Leadership: Case of a patient missing in the hospital   Elderly confused woman recently admitted to the hospital; family present in the unit   Patient was missing during the night   Nurse supervisor informed the CNO

26. Narrative from a CNO “… It was a Sunday morning and I was having breakfast with the night staff. It was Nurse Recognition Week. A new nurse supervisor came up to me and said that a patient had been missing during the night…

27. Narrative from a CNO …The family was angry, blaming the hospital. I said, ‘Let’s go talk with the family.’ We walked to the patient’s room. The supervisor was a big guy and he was very shaken. I was frightened…

28. Benevolent Gestures … I went into the room, sat down and introduced myself and said, ‘I am so, so sorry. I came to apologize on behalf of the hospital.’ The daughter started crying and I held her hand. I realized the family was blaming themselves in part because they were there the whole time.

29. More Benevolent Gestures … I said, ‘There is not going to be any blaming in this room.’ …After searching the hospital, we did find the patient…

30. More Benevolent Gestures … We had the patient thoroughly checked in the Emergency Department; they went over every inch of her whole body, and the family saw that we took great care in making sure their mother was alright. I stopped in to see the woman and her family every day… l.

31. Restoring Trust … The family thanked me for coming to see them -- they were stunned. We restored the family’s trust in us. I said to them, ‘If you have lost faith in the unit where your mother went missing, we can move her to another unit.’ The family did not want that – because their trust had been restored…

32. Role Modeling for Nursing Staff … The nursing staff were in the room and standing in the hallway as I was talking to the family and holding the daughters’ hands. … They had never seen someone take ownership. I was stunned to hear the next day how many people knew about this. People came up to me in the halls and said, ‘I heard about what happened and what you did…’ l.

33. Breaking the Cycle … I remember as a 25-year old nurse being publicly ridiculed for a mistake. There was a surgeon I trusted. The patient’s hand was swelling after surgery. He said to cut the back of the dressing. I should have asked more questions. He screamed at me in the middle of the nursing station.

34. Breaking the Cycle … Now, years later in my role at the hospital, nothing punitive is going to happen if someone makes an unintentional mistake….

35. “Drive out fear so that everyone may work effectively….” Deming

36. How patients and families have influenced my thinking and action…

38. A 70-year old female patient   Recent diagnosis of lung cancer   Patient reports no pain; morphine prescribed   Family reports of respiratory depression/loss of consciousness unheeded   Patient dies

39. A Daughter’s Words “My mother did have such sparkling beautiful blue eyes, which always triggers tears to my eyes when I seem them in pictures or daily thoughts… The last time I saw her beautiful blue eyes staring at me (awakening briefly after receiving the narcan, albeit too late) was when I was holding her hand and talking to her. Her brain had been damaged already from the medication overdose…

40. She was just horribly frightened and in irreversible multiple organ failure from the overdose that they did not treat until it was just too late. After the narcan, her beautiful blue eyes were filled with fear and she cried out in a baby-like voice, ‘Mama, Daddy, help me, help me.’ It is a horrific moment and horrific picture that is burned in my brain forever…

41. Only 24-hours earlier she was still my normal mother. She said, ‘I love you’ and I said, ‘Me too. Don’t worry, just go to sleep and I will be here all night right beside you in this chair…’”

42. “… I thought of calling 911 from my mother’s hospital room and regret to this day I didn’t do it.”

45. A wise person once said, “Every problem has a solution.”

46. Rapid Response Systems   A system to respond to patients whose condition is deteriorating   As late as the 1990s, the medical literature documented deaths from failure to rescue but no solution was proposed…. until…   IHI found the concept of Rapid Response Teams in the Australian medical literature

47. Rapid Response Systems   Early evidence suggest the potential to:   Reduce codes and mortality   Create a healthier work environment   Reduce nursing turnover

48. Driving Out Fear…   A med-surg nurse: “Before, when a patient was deteriorating, it was like being thrown to the wolves.”   What changed? A system is set up that enables nurses to practice with greater confidence and skill and less fear   What is good for patients is good for the people who care for them

49. Together is Better   Rationale for allowing patients and families to call the Rapid Response Team:   Dr. W. Edwards Deming: “Customers would be eager to work…to reduce mistakes.”

50. Opportunities for Providers and Patients/Families to Work Together Opportunities for Providers and Patients/Families to Work Together 3. Advocating as citizens for a better and more accountable health care system

51. Pop Quiz Name the part of the Medicare benefit that was designed by health care professionals and patients/families working together.

52. A Case Example of the Public’s Push for Improvement   A predominant view has existed that hospital-acquired infections are inevitable.   In history, noble attempts have been made to demonstrate that infections are not inevitable

53. Joseph Lister (1827 – 1912)

55. The 21 st Century Brings a New Context   The public is vastly more educated and has access to information.   The public is learning that infections can be prevented.   The public has its own sense-making and belief -- different from many self-sealing clinical systems.

56. Data Show Scourge of Hospital Infections Alarms raised on hospital infections

57. What the Public is Hearing… The public is reading about physicians who have the courage to speak out. The public is reading about physicians who have the courage to speak out. “The number of people needlessly killed by hospital infections is unbelievable. For years, we’ve just been quietly bundling the bodies of patients off to the morgue while infection rates get higher and higher.” “The number of people needlessly killed by hospital infections is unbelievable. For years, we’ve just been quietly bundling the bodies of patients off to the morgue while infection rates get higher and higher.” Dr. Barry Farr Dr. Barry Farr Former President, Society for Healthcare Epidemiologists of America Former President, Society for Healthcare Epidemiologists of America

58. Improvement Work Informs the Mental Models of the Public   Public is becoming aware of IHI’s work to reduce infections, and the progress on MRSA in Sweden, Netherlands   Pronovost’s work with Michigan hospitals to reduce CLABs by 66% in 3 months   Message: infections are not inevitable

59. Source of the Public’s Interest   Experience of suffering and death   2 million people acquire infections in hospitals; 99,000 people die every year   Data persuades, emotion motivates   Every data point is a person

63. Consumers Union Campaign: StopHospitalInfections.org   CU launched a campaign in 2003 to pass state laws requiring that hospitals publicly report infections   To date, 19 states have passed laws requiring public disclosure of hospital infection rates   The campaign has engaged patients and families who have experienced HAIs

65. Why Have Infections Captured the Public’s Attention?   Urgency: 40 deaths from HAIs during our presentation this morning   Universality: rich or poor; black, white or brown; D or R   Specificity: infections are understandable to the public -- in contrast to broad constructs, e.g. quality   Preventable: belief that most infections can be prevented   Authentic truth, not socially constructed, no spin

66.   Gifts of realization…   Two kinds of people in the world…

67. “An object at rest remains at rest until an external force is applied.” Isaac Newton

68. Wall of Silence Wall of Silence www.amazon.com www.amazon.com