Patient & Family Centered Care: Where Have We Been? What Have We Accomplished? Where are We Going?

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1 Patient & Family Centered Care: Where Have We Been? What Have We Accomplished? Where are We Going? CFAN October 16, 2011 Karen I. Wayman, PhD LPCH Endowed Director of Family Centered Care Lucile Packard Children s Hospital at Stanford Palo Alto, California What do rubber duckies have to do with Patient & Family Centered Care?

2 PARTIALLY EMBEDDED FCC PROGRAM Where We Started Don t underestimate the power of one person armed with the aegis of convictions, courage, character and a caring heart Mark Mathabane Kaffir Boy

3 What is Family Centered Care? Institute of Medicine Patient-Centered Equitable Effective Efficient Timely Safe Partnerships Surgeon General Koop Access to Information Build on Family Strengths Dignity & Respect Family Choice Flexibility

4 Definitions of Patient and Family Centered Care What Is Family-Centered Care at LPCH? Patients, family members & health care providers working together in partnerships to create the best quality health care in: Policy Creation Quality Improvement Patient Safety Clinical Care

5 Why Do It? National Perspective Drivers of PFCC 2001 Institute of Medicine s Report: Crossing the Quality Chasm 2005 Joint Commission: National Patient Safety Goal 13a 2010 Joint Commission: Advancing Effective Communication, Cultural Competence, and Patient and Family Centered Care.

6 The 100,000 Lives Campaign Scorecard An estimated 122,300 lives saved by participating hospitals Get Boards on Board.Defining and Over 3,100 hospitals enrolled spreading Over 78% the of all discharges best-known leveraged processes Over 78% for of all acute-care hospital beds Boards of Directors, so that they Over 85% can of participating become hospitals far sending more IHI mortality effective data in accelerating organizational progress toward safe care New audiences: Boards; patients and Participation in Campaign interventions: Rapid Response Teams: 60% AMI Care Reliability: 77% Medication Reconciliation: 73% families Surgical Site Infection Bundles: 72% Ventilator Bundles: 67% Central Venous Line Bundles: 65% All six: 42%

7 Demographics 1 st Health Experience Patient Satisfaction Expectations Past Health Experiences Patient Satisfaction + Family Centered Care = Managed Expectations

8 Something s happening here What it is ain t exactly clear Individuals taking action/advocating toward a common goal to change conditions MOVEMENTS Ad-hoc groups form to accomplish agreed upon goal

9 1990s 2000s 2010s The Three Generations of Family Centered Care 3rd Generation of FCC 1 st Generation of FCC Advisory Institutional Awareness of FCC Concepts 2nd Generation of FCC Partnership Institutional Understanding or Early Integration of FCC Concepts Embedded FCC Concepts are Adopted Throughout Institution 1990s 2000s 2010s The Three Generations of Family Centered Care 3rd Generation of FCC Embedded 2nd Generation of FCC Partnership 2nd Generation of FCC Partnershi p 1 st Generation of FCC Advisory 1 st Generation of FCC Advisory 1 st Generation of FCC Advisory

10 #1: Where does your institution trend? #2: Are you going to focus on Care Delivery or Operational Patient and Family Centered Care? #3: Are you going to focus on Hospitality; Clinical Care or Care Management #4: How do you assure the process to develop Patient & Family Centered Care is VPatient & Family Centered? #5: How do you match outcomes with PFCC activity? Karen I. Wayman, 2010 Do not duplicate without permission #1: Are you going to focus on Care Delivery or Operational Patient and Family Centered Care? Karen I. Wayman, 2010 Do not duplicate without permission

11 Patient & Family Centered Care: Operations vs Care Delivery Providing a PFCC Foundation in Operations Family Advisory Council Family Reps on Committees Family Presentations Family Review of Materials Family involvement in policy development Creating PFCC Care Delivery Staff Education PFCC Clinical Practices Peer Mentoring Health & Well Being Services Hospitality Clinical Decision making Information & Resources #2: Where does your institution trend? Karen I. Wayman, 2010 Do not duplicate without permission

12 #3: Are you going to focus on Hospitality; Clinical Care or Care Management Karen I. Wayman, 2010 Do not duplicate without permission

13 Hospitality & Customer Service Family Centered Care Activities Combined Arrival Parking Valet Directions Entry Security Information Orientation Admit Efficient reg Orientation Navigation Information Hospitalization & Clinic Partnership Activities Parent/Patient Role In: Family Centered Rounds Shared Decision Making Plan of Care Care Conferences Procedures Codes Discharge Care Management Parent Competencies To: Acknowledge Access Medical Information Discharge Coord In/Out Patient Care Parent Role in Coord Extended Family Needs Discharge Learn Care Regimen Care Management Nuture Child Systems Prepare for Discharge Service One-way communication Partnership Shared Decision-Making Service & Partnership #4: How do you assure the process to develop Patient & Family Centered Care is Patient & Family Centered? Karen I. Wayman, 2010 Do not duplicate without permission

14 Community Family Groups Patient & Family Surveys Evidence-based Literature

15 #5: How do you match outcomes with PFCC activity? Karen I. Wayman, 2010 Do not duplicate without permission 1990s 2000s 2010s The Three Generations of Family Centered Care 3rd Generation of FCC Embedded 2nd Generation of FCC Partnership 2nd Generation of FCC Partnershi p 1 st Generation of FCC Advisory 1 st Generation of FCC Advisory 1 st Generation of FCC Advisory

16 Family Centered Care at LPCH 1 st Generation of FCC Family Advisory Model Ad Hoc Groups Family Advisory Councils

17 Level I: Family Advisory Councils Clinic wait times Spanish language movies Clinic check-in (Spanish speakers perspective) Hospital Wide Advisory Council CF Advisory Council CF Web Site Infection Control Brochure Patient Safety Initiatives

18 Patient Safety Website FCC Champion Quality & Patient Safety Projects Growth Over Time & 2004: Hand Hygiene Disclosure Project Med Rec Project 2005 & 2006: Rapid Response Teams MRI Family Guidelines G-Tube Care Pre-Op Bathing Co-Sleeping Policy Pain Project Placement of Sanitizers Disclosure Project Condition H--RRT Parent s Presence at Codes Quality Website Family Bulletin Board Patient Safety Brochures Oncology Discharge Project 3ESN Discharge Project CVICU White Boards Self-cleaning OB Toilets PEC IV Starts Pain Project Parents on Rounds NICU Hand Hygiene Patient Education Committee

19 Walk-Abouts New OR Planning

20 Hospitality/Customer Service Policy Imput

21 Family Centered Care at LPCH Parent Experience Presentations New Hospital Design

22 Busting Out of the Boardroom Family Centered Care at LPCH 2 nd Generation of FCC Parent Partners Model

23 Heart Center Level II: Parent Partners Antepartum/Neonatology Oncology Cystic Fibrosis Neonatology Liver Transplant Family Centered Care at LPCH Committee Representatives

24 We have learned so much from the Neonatology Family Advisory Council about how to provide a welcoming environment for families in the NICU We feel very lucky to have a relationship with parents that fosters respect, collaboration and learning. Heather Freeman, NICU Assistant Nurse Manager

25 Family Centered Care at LPCH Parent Mentor Programs Patient Safety Brochures

26 FCC Parent Brainstorming Session Unaware parents could spend the night Found a gurney in the hallway to sleep Parents took turns sleeping in their car Parents are promised private room by referring MD-- angry when did not materialize Parents look for environmental clues on who can stay bedside Parents developed strategies for staying Pretending to pray Oppositional--digging in

27 New Roles for FCC Parents Family Centered Care at LPCH 3 rd Generation of FCC Embedded or Integrated Model

28 Complex Care Task Force FCC Input to the overall design Parent perspective Proposed FCC Program Components Parent Mentors Parent Tool Kit-Navigate Health Care & Education Systems Annual Family Conference Become a Part of the Health Care Team

29 Family Centered Care at LPCH Family Centered Rounding Blue Team Rounds: Is FCRs taking longer? No! Rounding time is about the same for existing patients and is shorter for new patients N= 40 N= 16 N= 84 N= 28 Who is present developing the Plan of Care? Bedside RN: 63% vs 93% Parent: 14% vs 64% Pharmacy: 0% vs 90% N=56 N=112

30 Parent Pre/Post Survey Blue Team Pre N=60 Post N=60 There were a lot of them but I sure liked hearing them knock around ideas and include me in on the plan for my son. - Mother of 8mo boy It is so good that they involve us. We can understand what they are doing, why they are doing it, and how we can better care for our child. Spanish speaking Mom of 6 a yr old girl I like them all in here, talking together at the same time. I wish they had it at my hospital at home. Quality Improvement Committee & Quality Safety & Service Committee Lisa Wise & Paul Sharek

31 Redesigning Hospital Discharge Identify Current State FCC: Family Perspective Make Transparent Interventions Set Expectations Discharge conversations with Parent Mentors Famil y to Famil y The Bass Center Parent Hour DISCHARGE: GETTING READY TO LEAVE THE HOSPITAL On The Day of Discharge Parent Discharge Brochures Weekly Parent Discharge Hours 1-1 Parent Mentor Contact In-room white board discharge Discharge Checklist for M edical Rounds Integrate discharge discussion at admission f amily -c entered c are When the doctor determines your child is medically I used to think discharge meant the time we walked out the hospital doors ready to leave the hospital, discharge orders are with our son. Now, I understand it in - written. The orders include: cludes all the steps to prepare for caring for him at home. medication for your child equipment and supplies needed at home special care instructions Tips from Parents appointments in the outpatient clinic Ask what test/procedures your child will The day of discharge is often very busy and need before you go home the preparations can take from several hours to Keep some items handy to entertain a couple of days to complete. You may even your child while the discharge plans are notice some discharge activities happening 2 being completed days before you actually go home. The Case Manager works with the nurses and other departments to make discharge plans. Parent Discharge Checklist Pack up your belongings Have street clothes ready for your child to wear home Arrange transportation Arrange local lodging if you are not going home Pick up medications from the outpatient pharmacy Review the Teaching Checklist and ask any unanswered questions (Need an interpreter?) Confirm home care instructions and outpatient appointments Discharge Brochures Activities You May Experience On the Day of Discharge IVs, lines, and tubes placed or removed depending on your child s needs Final tests and checks on your child s medical condition Confirmation of delivery of supplies and equipment to your home Review of the teaching, discharge summary and opportunity to ask more questions A final check up from a doctor Discharge Bead of Courage and Goodbye from the nurses One time, we were all set for discharge: supplies delivered to our home, medication picked up. W e had ev en put everything in the car and then my daughter got a fever! It was so d i sa p p oi n t i n g si n ce w e w er e a l l ready to go but we stayed a couple more days which was best for her.

32 Press Ganey Findings Significance <.05 Index Significance <.05 Research Partners

33 Our FCC Parent Actor Program Heather Lisa Michele Gwynne Nicole Diane Ambassador Training Clinic Team Communication Clinic FCC Parent/Provider Communication FCC Communication Sims

34 LPCH Experience FCC Communication Pilot Study Participants 60 Parents of children discharged from 3South at LPCH 20 Bedside Nurses on Medsurg Unit: Nurses (66% of Unit Staff) Nursing Measures Decision/Partner Preferences Communication Efficacy Team Efficacy Family Measures Press Ganey Communication Index Intervention Day long CAPE Training FCC Parent Actors Shared Decision Model Communication Partnership Index *Significant <.05 (Overall Index: 4.02 to 4.35; P<.05)

35 Think of Family Centered Care as a Start-Up REDUX What do rubber duckies have to do with Patient & Family Centered Care?