Creating the Culture of Change: The Role for Patients And Families

1. Creating the Culture of Change: The Role for Patients And Families Susan Edgman-Levitan, PA Executive Director John D. Stoeckle Center for Primary Care Innovation Massachusetts General Hospital

2. Why Involve Patients and Families in Reducing Harm? • We can’t afford to to go on “playing short.” • Patients and families experience the gaps and fragmentation in the system and see things we miss. • Keep health care professionals, agency staff and leaders honest and grounded in reality.

3. Why Involve Patients and Families in Reducing Harm? • Secure timely feedback, new ideas and additional creativity. • Inspire and energize staff!

4. Risk Management Literature Supports Patient and Family Centered Principles • Communication problems that can lead to malpractice allegations: • Failing to understand patient and family perspectives • Delivering information poorly • Devaluing patient and/or family views • Desertion (Bechman et al., Archives of Internal Medicine, 1994)

5. “Listening Posts” Synthesize all feedback from patients and families in one place: Surveys Focus groups Walkthroughs Compliment/Complaint letters Safety hotlines Patient/Family councils Staff feedback Community groups

6. Guiding Principles • Patients and families partner with healthcare professionals to set policies, design programs and establish priorities for continuous improvement • Create Patient and Family Advisory Councils

7. Guiding Principles • Patients and families as faculty for the health professions and employees • Participate in employee orientation • Share experiences in in-service programs • Teach medical students and house staff about partnership and disclosure

8. Guiding Principles • Never separate the patient and the family, unless the patient requests it. • Families are offered ways to keep in touch with clinical staff when they cannot be with the patient such as e-mail, beepers, voice mailboxes, and telephones. • Nursing units, intensive care units, and the emergency room will be open to families 24 hours a day, during shift changes, rounds, a code, and other emergency situations.

9. Guiding Principles • Never separate the patient and the family, unless the patient requests it. • Identify the primary family caregiver/ spokespersons with an ID card. Provide meals, discounted parking, skills training to support them. • Family members are welcomed to stay with the patient during anesthesia induction, in the recovery room, in radiology, in the emergency room, and during treatments and procedures.

10. Guiding Principles • Never deny the patient and family information, unless the patient requests it. • Offer the chart to patients for review: drug allergies, past and family history • On admission to the unit or to a new practice, orient the patient and the family to the ICU, the equipment, and introduce the team members.

11. Guiding Principles • Never deny the patient and family information, unless the patient requests it. • Wash and wipe boards • Always provide all test results • Offer families and patients scheduled conferences with the interdisciplinary team to discuss care

12. Guiding Principles • Never deny the patient and family information, unless the patient requests it. • Question and “doc talk” cards for patients and families • Procedures and Tests • Medications • Therapy: PT, OT, RT, other • Home care/self care • Restrictions: activity, dietary, other • Pain control • Follow-up

13. Guiding Principles • Never deny the patient and family information, unless the patient requests it. • Customize written discharge instructions by condition or procedure through the eyes of the patient and family. • Make sure the patient and family knows whom to call if they have questions. • Do everything possible to ensure NO SURPRISES!

14. Guiding Principles • Coordinate care and transfer trust • Share care plans and clinical pathways with patients and families • When possible, coordinate diagnostic procedures so that a family member can be present, if desired by the patient and family. • Facilitate trust by introducing the family and patient to the head nurse of the transitional unit or to new clinicians.

15. General Safety Tips for Patient and Families • Emphasize everywhere in every way that it is OK to question any clinician or staff member: “We’re all in this together…” • Always question unusual or unexpected tests or medications • Buttons: “Ask me to check your armband.”, “Ask me if I’ve washed my hands.” • Tent cards in the room with a problem “hot line” contact number for patients, families, and staff • Executive walkarounds should include patients as well as staff

16. National Agenda for Action:Patients and Families in Patient Safety Created by the National Patient Safety Foundation A collaboration of patients, families, patient safety experts, healthcare providers and patient advocates Public statement and call to action

17. National Agenda For Action I. Education and Awareness for: • General public (patients, families, media) • Healthcare organizations and professionals • Behavioral health professionals (social workers) Messages: • Knowledge about and prevention of errors • Importance of patient/family perspective • Experiencing medical errors differs from other types of trauma

18. National Agenda For Action II. Building a Patient and Family-Centered Culture Actions include: • Patient voice heard through Patient and Family Advisory Counsels and Board representation • Disclosure policies • Communication skills • Effective patient advocacy • State patient safety task forces

19. National Agenda For Action III. Research Suggested areas for research include: • “Bridging the Gap” • Disclosure • Integrating patients and families into systems • Team relationships (including patients/families) • Post traumatic stress specific to medical error

20. National Agenda For Action IV. Services for Patients and Families Actions Include: • National Resource Center and information line • Peer resource counseling • National training programs • Disclosure and communication programs

21. NATIONAL PATIENT SAFETY FOUNDATION®