Moderator: Cristian Nunez, OneLegacy Presenters: Marcia Penido , LCSW, Huntington Hospital

1. Breakout Session B:The Donation Process – The Continuum of Care Moderator: Cristian Nunez, OneLegacy Presenters: Marcia Penido, LCSW, Huntington Hospital Robert Coppel, OneLegacy Michelle Post, LMFT, OneLegacy

2. Questions to Run On How can the hospital’s family support staff help guide the donation process? How can you help ensure a family is approached effectively and appropriately? What happens with a donor family AFTER an organ or tissue donation?

3. But How Does this Relate to My Job? A Guide for the Hospital Social Worker & Chaplain Marcia Penido, LCSW, MPH Co-Chair, Organ & Tissue Donation Committee Huntington Hospital

4. Objectives At the end of this presentation, the participant will be able to: • Understand their hospital’s donation policy (timely referrals, diligent search, administrative consent). • Understand how they can impact the momentum of a referral/donor case.

5. Prompt the Referral • Know the clinical triggers for referring patients: • Loss of >1 brainstem reflex &/or • DNR & terminal extubation being considered • Ensure referral is on the radar of the MD/RN • Follow-up until referral is made

6. Trigger Card

7. Identify Patient/N.O.K. • Do you have a diligent search protocol? • Have you thought of everything? • Do you have a time limit set? • Legally-recognized decision-maker vs N.O.K. • Does your hospital allow administrative consent?

8. Support the Support System • Prepare them for MD’s dx/px • Attend care conference(s) if possible • Validate their grief • Reinforce medical info, if needed • Assist with concrete issues/answers • Get spiritual care provider, if needed • Offset anger directed at hospital/healthcare team • Run interference vs. withdraw into the background

9. Follow the Referral • Is the patient ruled in or out? • What did OL write? • What does the MD/RN know? • Does OL’s understanding match the MD’s? • DCD vs BD? • Map out the process for what will happen • Ensure unit staff understand & communicate in shift report

10. Pave the Way for Approach • N.O.K. • Decision-maker(s) • Influencers • Saboteurs • MIAs • Careful responses if donation questions are asked • Observe/listen for family dynamics • Ask about documents/listen for clues as to patient’s wishes

11. Huddle with the Team • Have a Team Huddle Worksheet on which to document collaboration/plan • Part of Medical Record • Huddle upon OL’s arrival • Huddle upon FCS’s arrival • Huddle prior to approach • Huddle whenever helpful (Did I mention you should huddle?)

12. Follow after the Approach • Support family regardless of decision • Ensure they know their decision is not judged or rewarded • Answer questions • Provide referrals • Run interference with potential saboteurs • Observe/listen for information helpful to After Action Review & pass it onto Donor Council

13. Learn, Learn, Learn • Review every case • Celebrate perfect collaboration • Learn from challenges & declines • Success is • an effective request • what the patient would have wanted or the N.O.K. needed to do

14. Wait! There’s More for You to Do! • Do you have a Donor Council/Donation Committee? • Is your discipline/department represented? • Is the nursing unit where donors are referred represented? • Do you have a method for giving feedback after cases are identified? • Do you receive recognition when there’s a success or challenging case? • Do you celebrate donor families?

15. Maximizing Outcomes… • Support….the family/support system • Diffuse…any distrust, misunderstandings, misperceptions, dissatisfaction • Follow closely…the process so that all policies are followed & opportunity for donation is being protected • Liaison…between medical staff & OL, ensuring collaboration

16. What Factors Can Affect an Approach? Robert Coppel Family Care Specialist OneLegacy

17. Objectives At the end of this presentation, the participant will be able to: • Understand what constitutes an effective or ineffective approach. • Understand of what a OneLegacy family approach consists.

18. Why Huddle? • Collaboration • Fact finding • First Person Consent / Advance Directives • Identify LNOK, Family Support System • Understanding family dynamics, key decision-makers • Spiritual and Cultural needs of each family • Establishing Hospital family support system: • SW, Pastoral, etc.

19. Negative Factors Affecting Consent • Inappropriate mention of donation registered or otherwise • Inadequate explanation of grave prognosis • Inaccurate assessment of family • Timing

20. Positive Factors Affecting Consent • Hospital supports organ donation • Team huddles • Appropriate requestor • Family satisfied with quality of care and communication

21. Positive Factors Affecting Consent • Reasonable time allowed with loved one • Understanding of brain death • MD coordinates end-of-life discussion

22. What Happens Behind Closed Doors? • Has the doctor talked with you? • What did he/she tell you? • What does that mean to you?

23. What Happens Behind Closed Doors? • Explain brain death, even if family understands. Keep in simple terms. • Discuss funeral arrangements. • Discuss coroner’s case and possible autopsy.

24. Thank You

25. Continuum of Care….What Happens Next? AFTERcare Michelle Post, MA, LMFT OneLegacy Clinical Aftercare Specialist Chair of AOPO Donor Family Service Council mpost@onelegacy.org

26. Objectives At the end of this presentation, the participant will be able to: • Recognize how OneLegacy’s Aftercare Department supports donor families. • Verbalize which aftercare programs, events, and correspondence is available to donor families.

27. Our Philosophy • AFTERcare = “Companioning” a bereaved family (Alan Wolfelt, Ph.D.) • Not experts on grief; take cues & offer support… Do not lead~ Walk WITH

28. Our Philosophy • AFTERcare = Consistency • After a family consents to donation, regardless of medically closing the case and not transplant… • Minimum of 2 years of support from OneLegacy Aftercare Department

29. Who Supports the Family? OneLegacy Aftercare Staff & Interns =Interdisciplinary team: RN, LCSW, LMFT, MSW, Chaplain

30. Aftercare Program ~ 2 yrs Sympathy Card

31. Aftercare Program ~ 2 yrs Anniversary Card on One Year Anniversary of Loved One’s Death

32. Aftercare Program ~ 2 yrs • Letters of Support • Grief literature • Timed intervals from the death through 2 yrs

33. “The Companion”, a Donor Family Newsletter • 3 times a year for as long as they want to continue to be on our mailing list

34. Aftercare Program • Phone calls of support

35. Monthly Grief Groups • Saturday Mornings ~ • Downtown LA – Kids, Teens, Adults (Span & Eng) • Redlands (Spanish – hope to start Eng) • O.C. (Hope to start Eng, Fall) Building Hope Through Companioning

36. Day of the Dead Craft Day & Cultural Diversity in Grief Wrkshp

37. Surviving the Holidays Workshop • Frames, Ornaments, Plates in memory of donors

38. Aftercare Intern Program Short-Term Grief Support Services

39. ON-LINE Private Facebook Group for Donor Families

40. “Fields of Gold” Donor Remembrance Ceremonies Terry Harrington, heart recipient and the ‘voice’ of Lisa’s sax on the “Simpsons,” performs Hundreds of donor family members gather at three annual events Each family receives a Life Bridges Donor Pin & Pendant set

41. Donate Life Rose Parade Float Decorating Days & Family Circle Rose Dedication A donor family gathers to decorate in honor of their loved one Donor Sister works on the Donate Life Float Donor parents dedicating a rose

42. Donate Life Run/Walk Donor families formed teams of all sizes and walked in honor of their loved ones. T-shirts personalized with each donor’s picture & Family Circle Garden Posters

43. Bridging Lives Quilt Donor families can create a quilt block which becomes a community based quilt Kern County Bridging Lives Quilt with project leader Becky Pitre

44. Other Aftercare Services • Organ Recipient Medical Updates • Tissue Disposition updates • Donor Family and Recipient Meetings

45. Long after the donation is complete...AFTERcare is available Michelle Post, MA, LMFT OneLegacy Clinical Aftercare Specialist Chair of AOPO Donor Family Service Council mpost@onelegacy.org

46. Questions to Run On How can the hospital’s family support staff help guide the donation process? How can you help ensure a family is approached effectively and appropriately? What happens with a donor family AFTER an organ or tissue donation?