Family-Centered Care (FCC) and Patient Safety Thursday, June 21, 2007 12:00 – 1:00 p.m. EDT

1. Family-Centered Care (FCC)and Patient SafetyThursday, June 21, 200712:00 – 1:00 p.m. EDT

2. Moderator: Erin R. Stucky, MD, FAAP Pediatric Hospitalist Children’s Specialists of San Diego Rady Children’s Hospital San Diego, California

3. This activity was funded through an educational grant from the Physicians’ Foundation for Health Systems Excellence.

4. Disclosure of Financial Relationships and Resolution of Conflicts of Interest for AAP CME Activities Grid The AAP CME program aims to develop, maintain, and increase the competency, skills, and professional performance of pediatric healthcare professionals by providing high quality, relevant, accessible and cost-effective educational experiences. The AAP CME program provides activities to meet the participants’ identified education needs and to support their lifelong learning towards a goal of improving care for children and families (AAP CME Program Mission Statement, August 2004). The AAP recognizes that there are a variety of financial relationships between individuals and commercial interests that require review to identify possible conflicts of interest in a CME activity. The “AAP Policy on Disclosure of Financial Relationships and Resolution of Conflicts of Interest for AAP CME Activities” is designed to ensure quality, objective, balanced, and scientifically rigorous AAP CME activities by identifying and resolving all potential conflicts of interest prior to the confirmation of service of those in a position to influence and/or control CME content. The AAP has taken steps to resolve any potential conflicts of interest. All AAP CME activities will strictly adhere to the 2004 Updated Accreditation Council for Continuing Medical Education (ACCME) Standards for Commercial Support: Standards to Ensure the Independence of CME Activities. In accordance with these Standards, the following decisions will be made free of the control of a commercial interest: identification of CME needs, determination of educational objectives, selection and presentation of content, selection of all persons and organizations that will be in a position to control the content, selection of educational methods, and evaluation of the CME activity. The purpose of this policy is to ensure all potential conflicts of interest are identified and mechanisms to resolve them prior to the CME activity are implemented in ways that are consistent with the public good. The AAP is committed to providing learners with commercially unbiased CME activities.

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9. CME CREDIT The American Academy of Pediatrics (AAP) is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians. The AAP designates this educational activity for a maximum of 1.0 AMA PRA Category 1 Credit™. Physicians should only claim credit commensurate with the extent of their participation in the activity. This activity is acceptable for up to 1.0 AAP credit. This credit can be applied toward the AAP CME/CPD Award available to Fellows and Candidate Fellows of the American Academy of Pediatrics.

10. OTHER CREDIT This webinar is approved by the National Association of Pediatric Nurse Practitioners (NAPNAP) for 1.2 NAPNAP contact hours of which 0.0 contain pharmacology (Rx) content. The AAP is designated as Agency #17. Upon completion of the program, each participant desiring NAPNAP contact hours should send a completed certificate of attendance, along with the required recording fee ($10 for NAPNAP members, $15 for nonmembers), to the NAPNAP National Office at 20 Brace Road, Suite 200, Cherry Hill, NJ 08034-2633. The American Academy of Physician Assistants accepts AMA PRA Category 1 Credit(s)TM from organizations accredited by the ACCME .

11. LEARNING OBJECTIVES Upon completion of this activity, you will be able to: • Describe the relationship between FCC and pediatric patient safety. • Recognize the importance of providing FCC when treating Children with Special Health Care Needs (CSHCN), as they are a very diverse population with very individual safety requirements. • Educate parents and caregivers about patient safety, and engage them as true members of the health care team.

12. Steven E. Krug, MD, FAAP Head, Division of Emergency Medicine, Children’s Memorial Hospital Professor of Pediatrics, Northwesten University Feinberg School of Medicine Chicago, Illinois

13. John M. Neff, MD, FAAP Professor of Pediatrics Director, Center for Children with Special Health Care Needs University of Washington/Children’s Hospital & Regional Medical Ctr. Seattle, Washington

14. Patient Safety and Patient and Family Centered Care of Children in the Emergency Department American Academy of Pediatrics Safer Health Care for Kids Webinar June 21, 2007 Steven E. Krug, MD Chair, AAP Committee on Pediatric Emergency Medicine Professor of Pediatrics, Northwestern University Feinberg School of Medicine Head, Division of Emergency Medicine, Children’s Memorial Hospital

15. Patient Safety in Healthcare • To Err is Human: Building a Safer Health System (Institute of Medicine, 2000) • 44,000 to 98,000 die each year in US hospitals due to preventable medical errors • An even greater number suffer morbidity related to medical error • This is likely a underestimate of the true occurrence of patient safety concerns

16. National Quality Forum • Factors associated with increased risk for medical error in health care • Multiple individuals involved in the care of a single patient • Patients with high acuity illness or injury • Rapid health care decisions under severe time constraints • High volume of patients and unpredictable flow • Barriers to communication with patients, families and other healthcare professionals • Interactions with multiple types of diagnostic and/or treatment technology Source: Kizer KW. Patient safety: a call to action. A consensus statement from the National Quality Forum. Medscape General Medicine 2001; 3:1-11.

17. Do These Factors Sound Familiar?

18. ACEP: Factors Placing Providers and Patients at Risk in the ED • Overcrowding • Complexity of emergency patient and family needs • Shortage of healthcare workers • Uncontrollable nature of workflow • Declining health status of patient populations • Language barriers • Limited access to primary and specialty care providers • Lack of established relationships between ED staff and patients Source: American College of Emergency Physicians. Patient safety in the emergency department environment report, 2001. Available at: http://www.acep.org.

19. Patient Safety Risks Unique to Children in the ED • Lack of standardized dosing due to broad range in size → weight-based dosing of medications • Increased risk for medication errors (e.g. 10-fold errors) • Inability of children to communicate complaints or provide a medical history • Children unaccompanied by a parent • Poor localization of pain • Limited on-going exposure of many ED care providers to ill and injured children • Failure/delay in recognizing critical illness or injury • Children with special health care needs

20. IOM: Attributes of High Quality Care Source: Institute of Medicine. Crossing the quality chasm: a new health system for the 21st century. Washington, DC: National Academies Press, 2001.

21. IOM: Patient and Family Centered Care and Pediatric Emergency Care • Failure to incorporate PFCC and culturally effective care into ED practice “can result in multiple adverse consequences, including difficulties with informed consent, miscommunication, inadequate understanding of diagnoses and treatment by families, dissatisfaction with care, preventable morbidity and mortality, unnecessary child abuse evaluations, lower quality care, clinician bias, and ethnic disparities in prescriptions, analgesia, test ordering and diagnostic evaluation” Source: Institute of Medicine. Emergency care for children: growing pains, Washington, DC: National Academies Press, 2006.

22. AHRQ: 20 Tips to Help Prevent Medical Errors in Children #1 - Be an active member of your child’s health team Source: Agency for Healthcare Research and Quality. 20 Tips to Help Prevent Medical Errors in Children. Patient Fact Sheet. AHRQ Publication No. 02-P034, 2002. Rockville, MD. Available at: www.ahrq.gov/consumer/20tipkid.htm

23. Core Principles of Patient- and Family-Centered Care (PFCC) • Treating patients and families with dignity and respect • Communication and sharing of unbiased information • Patient and family participation in experiences that enhance control and independence and build on their strengths • Collaboration in the delivery of care, policy and program development, and in professional education Source: Institute for Family Centered Care. Core principles of family-centered heath care. Advances in Family Centered Care 1998; 4:2-4.

24. PFCC: Conceptual Transitions • Family deficits  Family strengths • Control  Collaboration • Expert model  Partnerships • Information gate-keeping  Sharing • Negative support  Positive support • Rigidity  Flexibility • Patient/family dependence  Empowerment Source: Emergency Nurses Association. Assessment of family-centered care in the emergency department. 2001. Available at: http://www.ena.org.

25. AAP & ACEP: PFCC in the ED • An innovative approach to health care that recognizes the integral role of the family and is grounded in a respectful and mutually beneficial collaboration among the patient, family, and health care professionals • PFCC embraces the concepts that • We are providing care for a person, not a condition • The patient is best understood in the context of his or her family, culture, values and goals • Honoring the context will result in better health care, safety, and patient satisfaction • To optimize child’s care, ED providers, parents and the child are all on the same team Source: AAP Committee on Pediatric Emergency Medicine & ACEP Pediatric Committee. Patient and family centered care and the role of the emergency physician providing care to a child in the emergency department. Pediatrics 2006; 118:2242-4.

26. ED Challenges to Providing PFCC • ED overcrowding and acuity • Lack of prior relationship with family • Previous patient/family experiences • Cultural and social variations among families • Language barriers and health literacy concerns • Patient arrival to ED without parent/family • Unaccompanied minor seeking care • Visits related to child abuse and neglect • Resuscitation and other urgent interventions • Unanticipated death of a child in the ED

27. Opportunities for PFCC in the ED • Family presence throughout ED care • During clinical decision-making and teaching • During invasive procedures • Disposition and discharge planning • Linkage to the medical home • Comfort care • Culturally effective care • Language translation support • Child life & social services • ED physical plant design • Patient and family input into ED policies

28. Family Presence During Invasive Procedures and Resuscitation • Literature base consists primarily of surveys of provider beliefs & practices • 60 to 80% of families believe they want to be present during ED care • Providers are somewhat less supportive • RNs generally more supportive than MDs • Senior MDs more supportive than trainees • Support decreases with increasing acuity and/or intensity of the procedure Source: Eppich WJ, Arnold LD. Family member presence in the pediatric emergency department. Current Opinion in Pediatrics 2003; 15:294-8.

29. FP: What Do ED Providers Believe • A frequently offered concern by healthcare providers is that family presence (FP) may result in a delay or disruption of care • Reports of FP trials in EDs have not demonstrated this to be a significant concern • Oddly enough, healthcare providers who initially oppose FP commonly become fierce advocates after trying it

30. Proponents for Family Presence • American Heart Association • American Academy of Pediatrics • Ambulatory Pediatric Association • Emergency Nurses Association* • Emergency Medical Services for Children1 • Published guidelines/courses • EMSC FCC Guidelines (2000) • AHA CPR Guidelines (2000, 2005) • Pediatric Advanced Life Support (2002) • Advanced Pediatric Life Support (2004) • Emergency Nursing Pediatric Course (2004) • Trauma Nursing Core Course (2002) (1) Emergency Medical Services for Children. Guidelines for providing family-centered care. 2000.

31. FP: Reported Benefits for Family • Continued patient-family bonding and connectedness • Facilitation of the grieving process • Sense of closure on a life shared together • Removal of doubt about what was happening to the patient and the knowledge that everything possible was being done • A spiritual experience • Feeling that they had been supportive and helpful to the patient • Reduced fear and anxiety Source: Guzzetta CE, Clark AP, Wright JL. Family presence in emergency medical services for children. Clinical Pediatric Emergency Medicine 2006; 7:15-24.

32. FP: Benefits for Care Providers • Improved clinical-decision making • Improved clinical efficiency/ED patient through-put • Greater satisfaction with workplace environment • Improved patient satisfaction  • Lower burn-out/turnover • Improved understanding of social, ethnic and cultural diversity • Improved awareness of children with special healthcare needs • Reductions in medical error and liability risk • Are we more careful or deliberate with FP ? • Are we better informed abut our patients? • This may be especially valuable for special needs children

33. The Swiss Cheese Model • Model for accident causation used in risk analysis • Views human systems as successive layers of “cheese” or defenses against error • Redundancy helps prevent errors • Holes represent defense weakness • Some hazards manage to find the holes and bypass these defenses, resulting in losses • Is PFCC another “slice of cheese” or defense against medical errors ? Source: Reason JT. Human Error. Cambridge University Press, 1990

34. Culturally Effective Care • Delivery of care within the context of appropriate physician knowledge, understanding, and appreciation of all cultural distinctions leading to optimal health outcomes • Requires the acquisition of knowledge, development of skills, and demonstration of behaviors and attitudes that are appropriate to care for patients and families from a wide variety of cultural attitudes • AKA “cultural competency” & “cultural sensitivity” Source: AAP Committee on Pediatric Workforce. Ensuring culturally effective pediatric care: implications for education and health policy. Pediatrics 2004; 114:1677-85.

35. ED Communication Concerns • Language translation • Interpretation • Cultural variations in verbal and non-verbal communication • Communication anxiety • “Imbalance of power” • Health literacy Performance of a Lifetime

36. Health Literacy: The Silent Epidemic • Definition: Health literacy is the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions • 21% of the American Public cannot read the headlines of a newspaper • 48% cannot decipher messages with words and numbers, i.e. instructions about a bus route Source: Institute of Medicine. Health literacy: a prescription to end confusion. Washington, DC: National Academies Press, 2004

37. Health Literacy: A Barrier to PFCC • How many patients understand what we tell them or give them to read? • About 52%, according to research • How do we know parents understand discharge instructions • We often don’t • Parents/patients are quite ashamed of low literacy and they are very good at hiding the problem • Asking “Do you understand what we’ve talked about?” won’t get you very far • We need to hear it in their words • There is a big difference between asking “Do you understand” and “Take a minute and tell me what we’ve talked about”

38. Comfort Care & ED Physical Plant

39. Future Directions in PFCC • Education • Post-graduate • Trainee level • Patients and families • Advocacy and leadership • Research !!

40. EBM Review of PFCC for Children • Cochrane review of literature assessing the effects of PFCC models of care on the outcomes of hospitalized children • Study methods – literature search for RCTs, CCTs, etc comparing PFCC to other models • Study results – no studies met inclusion criteria – no analysis could be performed • This review highlights the dearth of high quality quantitative research on PFCC Source: Pratt SL, Davis LM, Hunter J. Family centered care for children in the Hospital. Cochrane Database of Systematic Reviews, 2007.

41. One Example: PFCC Bedside Rounds • Recommended in AAP/IFCC policy statement (2003) • Piloted on an inpatient unit at CCHMC • RWJF Pursuing Perfection • Issues • Teaching • Time • Confidentiality Source: Muething SE, Kotagal UR, et al. Family-centered bedside rounds: a new approach to patient care and teaching. Pediatrics 2007; 119:829-32.

42. ED Patient Safety Resources • Frush KS, Krug SE, AAP COPEM: Patient safety in the pediatric emergency care setting. (in press) • Look for this policy statement in Pediatrics ! • IOM Committee on the Future of Emergency Services in the US Healthcare System: Emergency care for children: growing pains. Washington, DC: National Academies Press, 2006. • Institute of Medicine. Crossing the quality chasm. A new health system for the 21st century. Washington, DC: National Academies Press, 2001. • Frush KS, Hohenhaus SM (eds). Patient safety in pediatric emergency medicine. Clinical Pediatric Emergency Medicine 2007; 7:213-75. • American Academy of Pediatrics: www.aap.org • Emergency Nurses Association: www.ena.org • Institute for Healthcare Improvement: www.ihi.org • Joint Commission on Accreditation of Healthcare Organizations: www.jointcommission.org

43. PFCC Resources • O’Malley P, AAP Committee on Pediatric Emergency Medicine, ACEP Pediatric Committee. Patient and family centered care and the role of the emergency physician providing care to a child in the emergency department. Pediatrics 2006; 118:2242-4. • Look for the companion Technical Report -- to be published soon ! • AAP Committee on Hospital Care. Family-centered care and the pediatrician’s role. Pediatrics 2003; 112:691-6. • Guzzetta CE, Clark AP, Wright JL. Family presence in emergency medical services for children. Clinical Pediatric Emergency Medicine 2006; 7:15-24. • Henderson DP, Knapp JF. Report of the national consensus conference on family presence during pediatric cardiopulmonary resuscitation and procedures. Journal of Emergency Nursing 2006; 32:23-9. • American Academy of Pediatrics: www.aap.org • Emergency Medical Services for Children: //bolivia.hrsa.gov/emsc/ • Emergency Nurses Association: www.ena.org • Institute for Family-Centered Care: www.familycenteredcare.org

45. Family Centered CareChildren with Special Health Care Needs and Patient Safety Safer Health Care for Kids John Neff MD Center for Children with Special Needs Children’s Hospital and Regional Medical Center Seattle, Washington

46. Objectives Gain an Understanding of the: • Relationship between Families of Children with Special Needs and their Children’s Safety • The Importance of Providing Family Centered Care (FCC) for Children with Special Health Care Needs (CSHCN) • The Unique Differences between Mother’s and Father’s in Relation to Safety Issues • Understand the Specific Home and Hospital Safety Issues of CSHCN

47. Relationship between Families of Children with Special Needs and their Children’s Safety • Families know their child best and their child’s strengths and limitation • Families know the developmental and physical challenges that their child has better than any specific care giver

48. Relationship between Families of Children with Special Needs and their Children’s Safety • Practitioners know medical and therapeutic needs and related safety issues that should be shared with families as partners • Safety must be a shared effort by both practitioners and families

49. The Importance of Providing FCC for CSHCN • Families are the protectors of the child • Families have aspirations that their child will reach his or her maximum level of achievement and pleasure through play and interaction with others • Families expect that their child will continue to develop at his or her own pace

50. Differences between the Mother’s and Father’s Role in FCC(generalities) • Mothers tend to be the ones who interact most with health professionals • Mothers are the organizers of the health plan • Mothers tend to be the protectors • Fathers are expected to be the providers • Fathers have a special interest in play activities as the child develops; they encourage risk taking • Fathers take special pride in child’s development • Fathers sometimes feel or are left out of FCC