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

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?

Co-Chair, Organ & Tissue Donation Committee 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

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.

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

Trigger Card

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?

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

Follow the Referral Is the patient ruled in or out? DCD vs BD? 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

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

(Did I mention you should huddle?) 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?)

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

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

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?

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

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

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.

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.

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

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

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

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

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.

Thank You

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

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.

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

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

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

Aftercare Program ~ 2 yrs Sympathy Card

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

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

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

Aftercare Program Phone calls of support

Building Hope Through Companioning 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

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

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

Aftercare Intern Program Short-Term Grief Support Services

ON-LINE Private Facebook Group for Donor Families

“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

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

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

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

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

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

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?