OneLegacy Donor Family Aftercare Continuum of Care… What Happens Next? Michelle A. Post, MA, LMFT Manager, Donor Family Aftercare

1.Recognize how OneLegacy’s Donor Family Aftercare Department supports donor families. 2.Verbalize which aftercare programs, events, and correspondence is available to donor families. Learning Objectives

“OneLegacy saves and heals lives through organ, eye and tissue donation, comforts the families we serve, and inspires our communities to Donate Life.” OneLegacy’s Mission Statement

After a family or donor authorizes donation, even if we must medically close the case and not transplant… …Surviving loved ones ARE a donor family! Authorization during the donation process = a donor family. Who is a Donor Family?

Donor Family Aftercare = Companioning WHAT IS “AFTERCARE”?

“Companioning” a bereaved family (Alan Wolfelt, Ph.D.)  Not the experts on grief; take cues learn from them & offer support  Do not lead; Walk WITH on the journey  Present to someone’s pain, not taking it away. (See The Tenets of Companioning) Donor Family Aftercare Philosophy

J. William Worden’s 4 Tasks of Mourning Adapted from: Worden, J.W. (1996). Children & Grief: When a parent dies. Guilford Press, New York, NY. and Worden, J.W. (2009). Grief Counseling & Grief Therapy, Fourth Edition. Springer Publishing Co. LLC, New York, NY. Task II: To Process the Pain of Grief Task III: To Adjust to a World Without the Deceased Task IV: To Find an Enduring Connection With the Deceased in the Midst of Embarking on a New Life Task I: To Accept the Reality of the (Death)

“Fields of Gold” Donor Remembrance Ceremonies Hundreds of donor family members at 7 annual events Loma Linda Long Beach Los Angeles x 2 Ventura/Santa Barbara County Orange County Granada Hills Terry Harrington, heart recipient & ‘voice’ of Lisa’s sax on “The Simpsons”

“Fields of Gold” Donor Remembrance Ceremonies Terry Harrington, heart recipient & ‘voice’ of Lisa’s sax on “The Simpsons” Video tribute Pins and pendants

“Fields of Gold” Donor Remembrance Ceremonies Video tribute Children are given crayons and the “How I Feel” Coloring Book by Alan Wolfelt

“Fields of Gold” Donor Remembrance Ceremonies Sand Ceremony Donor families choose a jar of colored sand

DTLA In-Person Grief Counseling Short-term (6-9 free sessions) Grief Support Services in: DTLA office Orange Redlands

Phone Calls of Support

Grief Support Program Results Self-report scale of 0 -5 n=105

Medical Updates and Tissue Outcomes Obtain updates on organ recipients or what tissues were distributed Organ: As often as every 6 months Tissue/Eye: Annually after 12 months post donation until tissues have all been distributed

Donor Family and Recipient Communication Written communication between donor families and transplant recipients Encourage anonymity in first communication Rare for families: <1% Tissue <20% Organ

Donor Family/Recipient Meetings A lung recipient holds a picture of his donor during a meeting with his donor’s mother. Less then 5% of all families ever meet an organ recipient. No tissue DF & RC meetings

Who Supports the Family? Donor Family Aftercare Staff Anna Binder ; Tracy Chang, MA; Michelle Post, LMFT; Claudia Lira, MSW; Elizabeth Wolf, MA; Deborah Tanner; Kari Kozuki, LCSW; Luz Diaz, MA AND YOU!!!!

Donor Family Aftercare = Consistency WHAT IS “AFTERCARE”?

Sent at timed intervals from date of donation: Personalized Cards Personalized letters of support Grief literature DF Aftercare Program ~ 2-3 Years

“The Companion”, Donor Family Newsletter 4 times a year for 3 years unless they opt to stay on

Donor Family Aftercare = Creativity WHAT IS “AFTERCARE”?

Grief Support Programs

Monthly Grief Workshops Saturday Morning Downtown LA  Children, Teens, Adults  Staff, volunteers  English, Spanish Orange County  Adults only  English

Monthly Grief Workshops Saturday Morning Redlands  Children, Teens, Adults  English, Spanish

Monthly Grief Workshops Topics  Grief 101  Diversity in Grief “Dia de Los Muertos” craft day  Surviving the Holidays craft day  Self-care in the New Year  Donation and Grief  Creativity and Healing  Staying Connected

Online Resources – Starting in 2012 Private Facebook Group for Donor Families “OneLegacy Donor Families” closed private group Donor families post about: 1) ??s of the day 2) How they are coping or what they need help with. 3) Positive things about life and the struggles. 4) Challenges with grief reactions and anniversaries

Special Services Death notification w children/teens Hospital-based child, teen, family grief support Funeral/Memorial Packets Referrals to support agencies Staff debriefings

Educational Workshops  Topics: Grief & Loss, Child/Teen Grief, Self-care, ASIST (Suicide Intervention), Death Notification  Audience: OL Staff, Hospitals, Community  Handouts available: Child, Teen, Adult book list Grieving Kids & Teens: Do’s and Don’ts Child Speak for Death and Mourning Rituals Special Services

Local Donor Memorial & Rose Ceremony Various local hospitals and Coroners Riverside County Regional Medical Center LAC-USC Huntington Memorial UCI Arrowhead Regional Antelope Valley Hospital Providence Systems Hospitals Riverside Community UCLA Arrowhead Regional Medical Center Special Services

Donor Family Teams at the Donate Life Run/Walk Donor family teams walk to remember T-shirts are personalized with each donor’s picture

Circle of Life Garden at Donate Life Run/Walk Donor families enjoy a place of reflection

Donate Life Rose Parade Float Donor Family Decorating Shifts Volunteer decorates in memory of her sister A donor family presents their loved one’s completed floragraph

Donate Life Rose Dedication Garden Donor parents place a rose in the Donate Life float’s Dedication Garden

 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?  When someone dies in your hospital or under your care, what kind of follow up care do you provide them? Questions For Our Hospital Partners