Shirley Otis-Green, MSW, ACSW, LCSW, OSW-C Founder & Consultant Collaborative Caring

1. Enhancing the Social Work Role in Family Conferencing: Integrating Screening into Evidence-Informed Practice Shirley Otis-Green, MSW, ACSW, LCSW, OSW-C Founder & Consultant CollaborativeCaring Shirley@CollaborativeCaring.net

2. Presentation Goals • To Discuss & Explore… • Systemic Perspective as Related to Oncology Care: An Invitation for Inter-Professional Collaboration • Strategies to Enhance Social Work Expertise & Leadership in Family Conferencing • Role of Screening & Assessment in Providing Evidence-Informed & Culturally-Congruent Care

3. Shared Perspective… What’s in the best interests of the patients and families that we serve?

4. What is Distress Screening? • Distress: “A multifactoral unpleasant emotional experience of a psychological (cognitive, behavioral, emotional), social, and/or spiritual nature that may interfere with the ability to cope with cancer, its physical symptoms and its treatment.” National Comprehensive Cancer Network, 1999 • An essential element of quality cancer care • 30-40% prevalence of clinically significant levels of distress across adult outpatients1-3 • 1Trask P, Paterson A, Riba M, et al, 2002; 2Jacobsen PB, Donovan KA, Trask PC, et al, 2005; 3Zabora et al., 2001

5. 33% experience adjustment disorders & other psychological challenges: Need Screening, Assessment, Referral & Counseling2 72% encounter serious problems and barriers related to the social, practical, psychological, informational, spiritual aspects of illness and treatment: Need Screening, Assessment, Navigation, Referral & Counseling3 100% need on-going education, information and guidance: Need Screening, Service Navigation & Coordinated Patient & Family Education Services* 5 -10% 1IOM, 2008 2Zabora, et al., 20033Loscalzo & Clark, 2007 4Zabora, et al., 2001 Psychiatric or mental health disorders1 Need Referral & Counseling1 Distress varies by cancer site4

6. Claim the Domain: Create A Culture For Screening, Assessment & Family Conferencing “Get our psychosocial house in order” (Loscalzo, 2011) • Standardize your message: Integrate your message into disease-directed care • Over-communicate about • The value; positive outcomes • Improved processes and systems – fewer disruptions in clinical services and flow (administrators HATE disruption and lack of predictability)

7. Keeping, Tracking, Using Data • To document the extent of patient/family challenges • To provide your institution with data for enhancing care (Quality Improvement/Quality Assurance) • To inform development and implementation of practice, institutional programs, and policies • To demonstrate impact and raise profile of oncology social work • Make a case for additional staffing, based on “home-based” data

8. Data Analysis ~ Example 1. Count how many patients check an item in the problem checklist (e.g. “Dealing with partner”). 2. Divide the number of patients who checked an item by the total number who completed DTs. 3. The result is the RATE or PERCENTAGE of patients challenged by the item. 4. Alternatively, add the number of checks within a category (e.g., Family Problems) for each patient. 5. Divide this number by the total number of DTs. 6. This number is the Average number of problems reported by patients seen in your unit.

9. What are your questions, concerns, challenges around distress screening? How have you addressed these challenges? • Instrument selection? • Implementation? • Turf Battles? • Social Work’s Competing Priorities? Other Obligations? Unclear Responsibility? Accountability? Limited Resources?

10. Screen to Intervene • Normalizes need for help and support • Establishes social worker’s professional role • Increases knowledge research base on psychosocial impacts of cancer • Efficacy of psychosocial support for cancer patients is well-established [Faller, et al., (2013), Journal of Clinical Oncology; Jacobsen, et al., (2008), CA: A Cancer Journal for Clinicians; Gottlieb & Wachala, (2007), Psycho-Oncology; Cwikel, Behar, & Zabora, (1997), Journal of Psychosocial Oncology, 1997; Meyer & Mark (1995), Health Psychology]

11. Evidence-Based Medicine (EBM) • Why do we do what we do when we do for whom we do? (Too often because that’s they way it’s always been done). • Evidence-based medicine is the conscientious, explicit, & judicious use of the best current evidence in making decisions about the care of individual patients. (Sackett, et al., 1996; 1971)

12. Five Steps of Evidence-Informed Care • Ask focused questions: Convert uncertainty into answerable questions • Systematically retrieve the best evidence with which to answer the questions • Critically appraise evidence for its validity, clinical relevance & applicability • Make a decision: Apply the results of this appraisal in your practice • Evaluating performance: Auditing evidence-based decisions (http://www.cebm.net/index.aspx?o=1914)

13. Goal: Evidence-Informed Practice • Critical thinking is key • Curiosity regarding outcomes • Commitment to explore options & compare outcomes • Intentionality in selecting interventions • Professionalism requires contribution to build a strong evidence base

14. Tie Theory to Evidence to Bring Research to Practice ~ • Teams are intricate Systems with their own dynamics and lifespan • They exist within the larger healthcare system and interact with and respond to the dynamics of the larger system • Family Systems Theory:Changing anything…changes everything! • Example: Communication with Families Facing Life-Threatening Illness: A Research-Based Model for Family Conferences (Fineberg, et al,(2011), Journal of Palliative Medicine) Virginia Satir

15. What are some of the major challenges encountered with family conferences? • Lack of space to accommodate family • Difficulty establishing preconference meeting with the health care providers • Difficulty establishing “off-hour” meetings (weekends, outside 9am-5pm) • Difficulty communicating with family due to language barriers, lack of a translator • Lack of clear “team” to facilitate family meetings

16. Key Elements of a Highly Functioning Team • Consensual Goals (clarity of purpose) • Tendency to “default” on the side of trust vs. mistrust (“don’t assume the worst about others”) • Willingness to “roll up one’s sleeves and do what needs to be done” (functional “nimbleness” & “role flexibility”) • Perspective of “we’re all in this together” (shared credit & shared responsibility) • Conscious playing off people’s strengths and supporting other’s weaknesses (without focus on fault finding or blaming) • Informal dept. survey (2007) of what makes a team work…

17. Goal: Enhanced Team Functioning • Most health care professionals receive predominantly discipline-specific training yet are expected to translate this into effective team functioning…(perhaps, not surprisingly this becomes a challenge!) • Inter-Professional/Transdisciplinary Care: Integrative, holistic, innovative, hospice/anthropology concept. • Implies a revolution of the medical hierarchy. • Collaboration/communication/compassion amongst team members based upon team-training.

18. Transformation in Palliative Care: Traditional Multi-Disciplinary Practice (Typically a “reactive” physician-led model with ad hoc membership using a consultative format) Interdisciplinary Team (More “proactive” model; theoretically recognizes contributions of all, but typically MD-RN based and physician-led) Transdisciplinary Team (Shared team vision; recognized role-overlap; integrated responsibilities, training, leadership & decision-making) - Dale Larson, (1993), The Helper’s Journey, Research Press.

19. 1. What is Medically Appropriate 10 Steps of the Family Conference • Based on current medical information what current and future medical interventions does the team believe will improve and which will worsen or provide no benefit the patient’s current condition in terms of function/quality/time (Adapted from: EPERC Fast Facts ~ Medical College of Wisconsin, 2006)

20. Pre-Meeting with Patient/Family: To Ensure Culturally Congruent Decision-Making • Conducted by: Social Worker? Chaplain? Nurse? • Obtain history & assess the patient and family’s needs & understanding of the situation – what are their goals, priorities, hopes, fears, cultural & spiritual concerns? • Determine: Who makes decisions in the family? • Who else should be included in the discussions (in person, via SKYPE, etc)? • Scheduling preferences? • Determine if “full disclosure” is desired?

21. Culture/Spirituality Provides the Lens Through Which We View Our Experiences

22. 2. Pre-Meeting Planning • Coordinate medical opinions between consultants and primary MD • Obtain patient/family psychosocial data • Review Advance Care Planning Documents • Is patient decisional • Is there a power of attorney • Review medical history/treatment options/prognostic information

23. 3. Environment • Choose a proper environment • Quiet, comfortable, chairs in a circle • Invite participants to sit down • Check your appearance, turn off pagers,

24. 4. Introductions • Identify legal decision maker or family designated decision maker • Introduce self and have others introduce themselves and relationship to patient • Review your goals; ask family if these are the same or different than their goals • Establish ground rules • Everyone can talk, but only one at a time • No interruptions

25. Build Rapport • Build a relationship • Ask the family to tell you something about the patient; • “I know about the patient’s illness but I was wondering if you could tell me something about her as a person, her hobbies or interests?”

26. 5. What does the patient know? • Make no assumptions; Find out what the patient/family already knows • What do you understand about your condition? • What have the doctors told you? • How do you feel things are going with your treatment? • Chronic Illness: tell me how things have been going for the past 3-6 mos. what changes have you noticed?

27. 6. Medical Review • Physician presents medical information succinctly • Present the Big Picture • Current condition; Expected Course • Speak slowly, deliberately, clearly • No medical jargon

28. Semantics Matter… • Avoid depersonalizing labels: • “The breast in room 603;” • “The DNR in ICU” • Lack of common language to discuss illness, planning and options: • Artificial Nutrition and Hydration vs. providing food and water • Do not or withhold vs. allow (DNR vs. AND) • Avoid: “Do everything” or “there is nothing more we can do”

29. 7. Reactions, Questions • Allow silence, give patient/family time to react and ask questions • Acknowledge and validate reactions prior to any further discussion • Invite questions

30. “For most patients, two fundamental facts ensure that the transition to death will remain difficult. First is the widespread and deeply held desire not to be dead. Second is medicine’s inability to predict the future … to give patients a precise and reliable prognosis… When death is the alternative, many patients who have only a small amount of hope will pay a high price to continue the struggle.” (Finucane, T.E. 1999)

31. 8. Review Care Options • Allow for pushback from patient and family • Consider that recommendations for treatment might be on a trial basis • Check again for clarity and consensus • Ask for more questions • Confirm plan of care: Goal is to identify Shared Goals of Care that are tailored for this particular patient/family at this particular point in time • Consider all options and repercussions of these options and provide recommendations based upon mutual understanding of situation.

32. 9. Confirm Plan of Care • Based on the decision what do they want/need in the time remaining • Confirm Goals- so what you are saying is • Establish a Plan • Decide on steps to achieve plans • Usually involves discussion of CPR, ICU, artificial nutrition/hydration, home hospice • If test or treatment won’t meet goals it’s best not to start it • Confirm plan & summarize to ensure that everyone shares understanding of plan

33. 10. Conclusion • Summarize areas of consensus and any disagreements • Caution against unexpected outcomes • Provide continuity • Document in the medical record & provide summary documents to family • Who was present, what was decided, next steps • Discuss results with other concerned healthcare professionals not present

34. Implications for Your Institution?

35. Summary • A Commitment to Excellence is Needed if We are to Transform the Delivery of Care toThose We Serve • Importance of Screening & Assessment in Determining Evidence-Informed Interventions • Family Conferencing Offers Leadership & Advocacy Opportunities for Oncology Social Workers • Our Skills in Understanding Systems can be Useful to Enhance Team Dynamics and Improve Family Functioning