Recognizing . . . . . Patient- and Family-Centered Care William Schwab, M.D. University of Wisconsin Department o

1. Recognizing . . . . . Patient- and Family-Centered CareWilliam Schwab, M.D. University of Wisconsin Department of Family Medicine

2. Families are big, small, extended, nuclear, multi-generational, with one parent, two parents, and grandparents. We live under one roof or many. A family can be as temporary as a few weeks as permanent as forever. We become part of a family by birth, adoption, marriage, or from a desire of mutual support. A family is a culture unto itself., with different values and a unique way of realizing its dream; together, our families become the source of our rich cultural heritage and spiritual diversity. Our families create neighborhoods, communities, states and nations. -Task Force on Young Children and Families, New Mexico Legislature What is a Family? (cont’d)

3. People are treated with respect and dignity. Health care providers communicate and share complete and unbiased information with patients and families in ways that are affirming and useful. Individuals and families build on their strengths through participation in experiences that enhance control and independence. Collaboration among patients, families, and providers occurs in policy and program development and professional education, as well as in the delivery of care. Patient- and Family-Centered Principles

4. The system is a nightmare to navigate Caregivers don’t provide enough information Patients are not involved in decisions about their health care Hospital caregivers are not emotionally supportiveAmerican Hospital Association and the Picker Institute, 1996 Public Perceptions of Health Care

5. Inconsistent Quality Errors, especially in the transitions and transfers Infections Poor Communication Unsatisfied customers Poor design of facilities Major Unnecessary Costs in Health Care

6. Institute of Medicine —Crossing the Quality Chasm: A New Health System for the 21st Century

7. System-Centered Driving Force: The priorities of the system and those who work within it drive the delivery of health care. Patient- Focused Driving Force: The patient is the focus or unit of care. Interventions are done to and for him/her, instead of with the patient. The patient is not viewed within the context of family or community. Family-Focused Driving Force: While the family is the focus or the unit of care, interventions are done to and for them, instead of with them. Patient- and Family-Centered Driving Force: The priorities and choices of patients and their families drive the delivery of health care. Recognizing the Driving Forces

8. Discuss each statement and identify the driving force: SC, PF, FF, or FC. After reviewing patient satisfaction surveys, the clinic changes its office hours to include some evening sessions. An obstetrical patient’s husband is invited to clinic appointments and to observe the ultrasound. A patient who has been newly added as a member of the clinic’s Quality Improvement committee is sent a letter telling her where and when the next meeting will be held. Nursing staff plan the diabetes education class. Recognizing the Driving Forces (cont’)

9. Discuss each statement and identify the driving force: SC, PF, FF, or FC The clinic administrator invites patients and families to comment on the final plans for the facility’s upcoming renovation. Patients and family members teach an orientation class for all new staff and physicians. The job description for nurses states that they are to develop chronic disease management plans for patients and their families. Clinic staff link a patient who has depression with a peer mentor. Recognizing the Driving Forces (cont’d)

10. Discuss each statement and identify the driving force: SC, PF, FF, or FC A nurse and a social worker co-lead monthly support group meetings for families caring for patients with dementia. Computers are available in the waiting room for patients to record their goals/priorities for each office visit. A multidisciplinary committee develops new educational materials about asthma for patients and families. Three patient and family advisors are invited to join a QI team that is beginning an initiative to improve transitions of care between the emergency department, inpatient hospital units, and community primary care practices. Adapted from: Edelman, L., Ed. (1991). Getting on Board: Training Activities to Promote the Practice of Family-Centered Care. Baltimore: Project Copernicus. Recognizing the Driving Forces (cont’d)

11. Patient- and family-centered care provides the framework and strategies for improving quality, safety, and the experience of care.

12. Why Patient- AND Family-Centered Care Social isolation is a risk factor. The majority of patients have some connection to family or natural support. Individuals, who are most dependent on hospital care and the broader health care system, are most dependent on families… The very young; The very old; and Those with chronic conditions.

13. AHA has developed leadership strategies to make the six aims of the Institute of Medicine’s Report a reality in hospitals. AHA News features a regular column on patient- and family-centered care. AHA has sent a Patient- and Family-Centered Toolkit to the CEO of every U.S. Hospital. www.aha.org American Hospital Association

14. . . .integrating patient- and family-centered care with quality and safety agendas. www.aha.org AHA McKesson Quest for Quality Prize

15. A trusted friend or family member should accompany you for clinic and hospital visits. Patient Safety Joint Commission on Accreditation of Healthcare Organizations (JCAHO)

16. Patient Protection Notice of Privacy Protections Controlled access to records Ability to edit Exceptions to improve care Treatment Payments Operations HIPAAHealth Information Portability and Accountability Act

17. Patient Care Medical Knowledge Practice-Based Learning and Improvement Interpersonal and Communication Skills Professionalism Systems-Based Practice Accreditation Council for Graduate Medical Education

18. 2001: “Family-Centered Home Care,” a chapter developed by the Institute for Family-Centered Care and co-authored by a parent of children with special needs. “A Self Assessment Inventory: Family-Centered Pediatric Home Care” included in the publication. 2003: Policy Statement in Pediatrics American Academy of Pediatrics

19. 1996 . . . Issues a statement that family-centered care is the standard of care for pediatric nursing. 2003 Publishes a comprehensive review of the literature with practice recommendations. Society of Pediatric Nurses

20. Boudreaux, E. D., Francis, J. L., & Loyacono, T. (2002). Family presence during invasive procedures and resuscitations in the emergency department: A critical review and suggestions for future research. Annals of Emergency Medicine, 40(2), 193-205. National Association of Emergency Medical Technicians

21. Patient- and Family-Centered Care Linked with Cultural Competency

22. An approach to providing health care services in a high-quality, comprehensive, and cost-effective manner Provision of care through a primary care physician through partnership with other allied health care professionals and the family Acts in CYSHCN’s best interest to achieve maximum family potential Medical Home (AAP)

23. The American Academy of Family Physicians believes that everyone should have a personal medical home that serves as the focal point through which all individuals-regardless of age, sex, race, or socioeconomic status-receive acute, chronic, and preventive medical services. Through an on-going relationship with a family physician in their medical home, patients can be assured of care that is not only accessible but also accountable, comprehensive, integrated, patient-centered, safe, scientifically valid, and satisfying to both patients and their physicians. Medical Home (AAFP)

24. Medical Home – Joint Principles3/5/07: AAFP, AAP, ACP, AOA

25. Care that is: Accessible Family-centered Continuous Comprehensive Coordinated Compassionate Culturally effective and for which the Primary Care Physician shares responsibility Medical Home Common Elements

26. Chronic Care Model (ICIC)

27. Self-managementsupport refers to the information, education, resources and care offered to people with chronic conditions to help them enhance their competence and confidence in managing their illness, making informed decisions about care, and engaging in healthy behaviors. Collaborative self-management support refers to relationships that are built among all members of the health care team including the patient and her/his family. Care practices include engaging the patient and family with an interdisciplinary team in Information Sharing, Goal Setting, Action Plans, Follow-Up Support. Chronic Care Model. . .Collaborative Self-Management Support

28. Self Management Support • www.newhealthpartnerships.org

29. www.patientpowered.org

30. Brown University Family Care Center, Providence RI • Information Sharing. • Goal Setting. • Action Plans. • Follow-Up Support.

31. Collaboration “Collaboration means that no one interest group is always right. It means taking what you think, and what I think, and what someone else thinks, and coming up with something that works for everyone.” Bev McConnell Crider From: Essential Allies: Families as Advisors

32. Mutual respect for skills and knowledge. Honest and clear communication. Understanding and empathy. Mutually agreed upon goals. Shared planning and decision making. Open and two-way sharing of information. Accessibility and responsiveness. Joint evaluation of progress. Absence of labeling and blaming. Elements of Collaboration

33. At all Levels of Health Care In the care for an individual patient. In program planning and evaluation. At the policy level. Family/Professional Collaboration

34. Attitudes & perceptions about each other. Past experiences. Cultural differences. Socioeconomic and educational influences. Lack of skills. Lack of logistical & administrative support. Different purposes or agendas. Barriers to Collaboration

35. Family-centered care is not just "being nice." It is a direct and intentional effort to unequivocally communicate to patients that they are viewed as distinct and valuable individuals with a family and place in the community. The individuality of each patient and family is acknowledged. Relationships between patients, families, and providers are essential alliances and partnerships with each bringing expertise to decision-making. Communication

36. Care is based on continuous healing relationships. Care is customized according to patient needs and values. The patient is the source of control. Knowledge is shared and information flows freely. Decision making is evidence-based. . Rules for Health Care in the 21st Century—The National Health Care Quality Report

37. Safety is a system property. Transparency is necessary. Needs are anticipated. Waste is continuously decreased. Cooperation among clinicians is a priority. Crossing the the Quality Chasm: A New Health Care System for the 21st Century Institute of Medicine, March 2001 Rules for Health Care in the 21st Century—The National Health Care Quality Report (cont’d)

39. Patient Centeredness: A Definition National Health Care Quality Report Patient centeredness refers to health care that establishes a partnership among practitioners, patients, and their families (when appropriate) to ensure that decisions respect patients’ wants, needs, and preferences and that patients have the education and support they require to make decisions and participate in their own care. Crossing the Quality Chasm: A New Health System for the 21st Century. Institute of Medicine, March 2001.

40. Attitude is everything. Values determine outcomes. All families have strengths. Sensitivity does not mean psychoanalysis. Case management is not the answer. Patients and families are the experts on the experience of being service consumers. The person with the most flexibility will be the catalytic element in the system. Patient- and Family-Centered Care Rules to Live By

41. Treat each person as an individual. Respect patient and family knowledge about their own health needs. Meet patients and families at their models of the world. Negotiate your role and relationship (areas of responsibility). Share knowledge and information. Avoid psychological labeling. Assist in problem solving. Teach choice. Honor natural supports. Patient- and Family-Centered Care Tricks of the Trade

42. Say “I don’t know,” when you don’t know. Develop roles for patient and family consultants. Consider functional issues in a gradual but systematic way. Create alliances with other professionals at a personal level. Make the primary care specialist relationship work. Make sure that your staff knows about special needs. Anticipate cross coverage. Develop financial creativity. Make talk time available. Patient- and Family-Centered Care Tricks of the Trade (cont’d)