1. Power and Privilege of Patient and Family Centered Care Jim Conway, MS Adjunct Faculty, HSPH Senior Fellow, IHI jconway@hsph.harvard.edu 1

2. Objectives Explore the power and privilege of providing patient and family centered care Examine the leadership behaviors necessary for patient and family centered care and to sustain patient experience change 2

3. Outline Patient and Family Centered Care Why me talking about this? Why are all of us talking about this? What is it? Up, down, and all around Great examples, great work Making it the way WE do the work Resources 3

4. “I don’t care who you are. I’m going to stay with my child.” Pediatric Mother, 1976 4

5. 5 DANA-FARBER ADMITS DRUG OVERDOSE CAUSED DEATH OF GLOBE COLUMNIST, DAMAGE TO SECOND WOMAN When 39-year-old Betsy A. Lehman died suddenly last Dec. 3 at Boston's Dana- Farber Cancer Institute, near the end of a grueling three-month treatment for breast cancer, it seemed a tragic reminder of the risks and limits of high-stakes cancer care. In fact, it was something very different. The death of Lehman, a Boston Globe health columnist, was due to a horrendous mistake: a massive overdose of a powerful anticancer drug that ravaged her heart, causing it to fail suddenly…. 3/23/1995 5

6. The Time Is Now If health and/or healthcare is on the table, then the consumer (public, patient, family member) must be at the table, every table. NOW! Lucian Leape Institute, 2008 6 http://content.hcpro.com/pdf/content/257750.pdf

7. Health Reform Priorities 1.Care coordination for chronic disease 2.Overuse 3.Palliative end-of-life care 4.Patient and family engagement 5.Population health 6.Safety 7 http://www.nationalprioritiespartnership.org/Priorities.aspx

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9. IOM: Patient and Family Centered Care Care based on continuous healing relationships Customized according to patient needs and values Patient is the source of control Knowledge is shared and information flows freely Transparency is necessary Needs are anticipated 9 IOM Crossing the Quality Chasm 2001

10. Four Key Concepts of PFCC Dignity and respect: Providers listen and honor patient and family perspectives and choices. Information sharing : Providers share complete and unbiased information in ways that are affirming and useful. Participation: In care and decision-making Collaboration: In policy and program development, implementation and evaluation, as well as the delivery of care 10 American Hospital Association and the Institute for Family-Centered Care. (2004). Strategies for leadership—Patient and family-centered care toolkit. Washington, DC.

11. It is also what clinicians want… …it is why they went into health care. …it just isn’t designed into health care. 11

12. Question 1 What are some examples of patient and family centered care (personal and public engagement) already going on in your exam room, clinic, unit, or system? Huddle for a few minutes with those around you? 12

13. The Chain of Effect in Improving Health Care Quality Patient and Community Experience Aims (safe, effective, patient- centered, timely, efficient, equitable) Micro-system Process Simple rules/Design Concepts (knowledge-based, customized, cooperative) Organizational Context Facilitator of Processes Design Concepts (HR, IT, finance, leadership) Facilitator of Facilitators Design Concepts (financing, regulation, accreditation, education) Environmental Context 13 Berwick D. Users Manual to the IOM Chasm Report http://content.healthaffairs.org/content/21/3/80.full.pdf

14. Patient and Family Centered Care Is… Person Centered Care Is… LocationExamples EnvironmentCommunity, Region, State Community groups Care Coordination, ACOs, Medical Homes Advanced care planning, POLST, MOLST School & church programs Public health & other consumer campaigns OrganizationHealth System, Trust, Hospital, Nursing Home Experience Surveys P&F Councils, Advisors, Faculty Resource Centers, patient portals Access to help and care 24/7 Medication lists Micro-systemClinic, Ward, Unit, ED, Delivery Parent, Advisors, & advisory councils Open access, optimized flow Family participation in rounding Experience of care Bedside, Exam Room, Home Access to the chart Shared care planning “Smart Patients Ask Questions” 14 Balik B, Conway J, Zipperer L, Watson J. Achieving an Exceptional Patient and Family Experience of Inpatient Hospital Care. Cambridge, Massachusetts: 2011.

15. Patient and Family Centered Care Isn’t Just Threads It is a fabric of integrated, reinforcing strategies and partnerships Community Organization Microsystem Locus of care 15

16. DFCI: Overarching: Structures & Processes Committees:  Board Quality Committee  Patient Safety Committee  Strategic Planning  Operating Leadership Interviews New Employee Orientation Side by Side Resource Centers Rescue events NPSF & IHI meetings 16

17. Business Case: Patient- and Family-Centered Care “Nice but not necessary” X 17 And, the evidence keeps on coming!

18. Patient Experience Is Strongly Correlated With Other Key Outcomes Health outcomes – Patient adherence – Process of care measures – Clinical outcomes Business outcomes – Patient loyalty – Malpractice risk reduction – Employee satisfaction – Financial performance Edgman-Levitan S., Shaller D. et al. The CAHPS Improvement Guide. Boston: Harvard Medical School: 2003. 18

19. Financial Benefits of Patient- Centered Care in Planetree Reduced length of stay Lower cost per case Decreased adverse events Higher employee retention rates Reduced operating costs Decreased malpractice claims Increased market share Charmel P, Frampton S. Building the Business Case for Patient Centered Care. HFM. March, 2008 19

20. Conclusions. Most hospitalized patients participated in some aspects of their care. Participation was strongly associated with favorable judgments about hospital quality and reduced the risk of experiencing an adverse event. 20 Weingart SN, Zhu J, Chiappetta L, Stuver SO, Schneider EC, Epstein AM, David-Kasdan JA, Annas CL, Fowler FJ Jr, Weissman JS. Hospitalized patients' participation and its impact on quality of care and patient safety. Int J Qual Health Care. 2011 Feb 9. [Epub ahead of print] Center for Patient Safety, Dana-Farber Cancer Institute, Boston, MA, USA.

21. 21 We found positive associations of FCC with improvements in efficient use of services, health status, satisfaction, access to care, communication, systems of care, family functioning, and family impact/cost. There was little available evidence, however, for some outcomes, including cost and transition.

22. Press Ganey Patient–Hospital Employee Loyalty Link 22

23. Question 2 What are immediate opportunities you see? Discuss your ideas for a few minutes. 23

24. Culture Change Nothing About Me, Without Me 24

25. The Challenge is Huge Aiken C, Keller S, Rennie M. The Performance Culture Imperative. McKinsey & Company. 2007 25

26. Culture Defined “What gets rewarded around here” “The way things get done when no one (or is it when every one) is looking” “What has made us successful” 26

27. The single most important factor that distinguishes major culture changes that succeed from those that fail is competent leadership at the top. No single effort at culture change has been successful starting at the bottom John P. Kotter & James L. Heskett, Corporate Culture & Performance (Free Press 1992) 27

28. Behavior For All It’s a New Day; It’s a New Partnership Asking – What do you think? What works and what doesn’t? – Go on the affirmative; don’t wait for patients and family Respectful and Active Listening – Don’t need to defend or counter ever point Acting – Not expected to do everything but be able to explain why. – Meet patients and families where they are Respecting – Don’t ask me what I think if the decision is made. – Explain the decision Celebrating 28

29. Executive Leadership Making It the Way We Do the Work Strength and clarity of the vision – How does this fit with strategy? – This isn’t an if discussion, it’s a when and how discussion – It isn’t a gift; it’s a right! – Staff look at you and think PFCC Positioning people for success with training, modeling, sharing If it’s about care, the patient and family are part of the conversation, all conversations If it is important to our patients and families, it is important to us, even if it is hard Accountability 29

30. Governance Nothing More Important Strength and clarity of expectation Voice of the patient, and the patient/family – Dashboard (inpatient, outpatient, ED) – Board committee meetings – Strategic planning meetings – Walk-rounds – Community Hearing it unfiltered, blunt, direct, actionable 30

31. Department, Division, Work Unit, Physician, Clinical, Administrative Leadership Reinforce organizational vision; “It’s important to me” Monitor, coach, and reinforce Use respectful language when describing patient / family Daily rounds (MBWA) with patients and families – What’s working and what’s not? What’s getting in the way? Patient and family are part of executive and other walk rounds Come on down – “We’re trying to improve this… would you be interested in helping us?” “Do you have a moment to come to my staff meeting?” 31

32. In Daily Outpatient Clinical Practice Care is Designed Around the Patient A Few Examples Who “schleps?” – 80% of services in close vicinity for the patient Who waits? – 90% of patients seen in 20 minutes of arrival Who sees who when? – Scheduling is a decision made together among clinicians Who is in the room with the patient? – Up to the patient What questions the patient wants answered today? – Smart patients ask questions Whose medical record? – The patients. It’s their illness. 32

33. 33 http://www.ihi.org/IHI/Results/WhitePapers/AchievingExceptionalPatientFamilyExperienceHospitalCareWhitePaper.htm

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35. An IHI Resource Center Leadership Response to a Sentinel Event: Respectful, Effective Crisis Management http://tinyurl.com/IHIEffectiveCrisisMgmt “In the aftermath of a serious adverse event, the patient/family, staff, and community would all say, ‘We were treated with respect.’” 35

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37. A Powerful Evolution Do it to me. Do it for me. Do it with me. Martha Hayward Patient Advocate

38. “Quality improvement begins with love and vision. Love of your patients Love of your work If you begin with technique, improvement won’t be achieved.” A. Donabedian, M.D 38

39. Comments, Questions, Answers "Do not go where the path may lead; go instead where there is no path and leave a trail” Ralph Waldo Emerson 39

40. Sample Self Assessment Tools Family Voices – http://www.familyvoices.org/pub/projects/fcca_UsersGuide.pdf http://www.familyvoices.org/pub/projects/fcca_UsersGuide.pdf Institute for Family Centered Care. Strategies for leadership. Patient and Family Centered Care. A Hospital Self Assessment Inventory. – http://www.aha.org/aha/content/2005/pdf/assessment.pdf. http://www.aha.org/aha/content/2005/pdf/assessment.pdf IHI. Patient- and Family-Centered Care Organizational Self- Assessment Tool. http://www.ihi.org/IHI/Topics/PatientCenteredCare/PatientCenteredCareGeneral/EmergingC ontent/PFCCOrgSelfAssess.htm http://www.ihi.org/IHI/Topics/PatientCenteredCare/PatientCenteredCareGeneral/EmergingC ontent/PFCCOrgSelfAssess.htm American Hospital Association-McKesson Quest for Quality Prize ® Criteria http://www.aha.org/aha/content/2008/pdf/2009Q4Qcriteria.pdf. http://www.aha.org/aha/content/2008/pdf/2009Q4Qcriteria.pdf 40

41. Other Resources Associations and Groups Joint Commission – http://www.jointcommission.org/NewsRoom/NewsRelease s/nr_08_04_10.htm http://www.jointcommission.org/NewsRoom/NewsRelease s/nr_08_04_10.htm Picker Institute – www.pickerinstitute.org www.pickerinstitute.org IHI – www.ihi.org www.ihi.org WHO Patients for Patient Safety – http://www.who.int/patientsafety/patient s_for_patient/en/ http://www.who.int/patientsafety/patient s_for_patient/en/ Institute for Family Centered Care – www.familycenteredcare.org www.familycenteredcare.org Planetree – www.planetree.org www.planetree.org Partnership for Healthcare Excellence – www.partnershipforhealthcare.org www.partnershipforhealthcare.org Consumers Advancing Patient Safety – www.patientsafety.org www.patientsafety.org New Health Partnerships – www.newhealthpartnership.org www.newhealthpartnership.org What ‘Patient-Centered’ Should Mean: Confessions Of An Extremist Berwick Health Affairs.2009; 28: w555-w565 41