1. Deb Gravatt and Sarah Briggs Family Support Specialists LifeShare Of The Carolinas Deb Gravatt and Sarah Briggs Family Support Specialists LifeShare Of The Carolinas FAMILY SUPPORT PRACTICES A Dual Advocacy Approach to supporting families in crisis

2. OBJECTIVESOBJECTIVES

3. Ensure Good Communication Between Key Members of the Healthcare Team Ensure Good Communication Between Key Members of the Healthcare Team Ensure Good Communication with the Organ Recovery Coordinator (ORC) Ensure Good Communication with the Organ Recovery Coordinator (ORC) Support Chaplains Support Chaplains Support Nurses and Other Staff on the Unit Support Nurses and Other Staff on the Unit Family Support Specialist

4. First Steps: Onsite Engagement Activated by ORC after Referral Activated by ORC after Referral First Interaction with Patient’s Nurse First Interaction with Patient’s Nurse Talk with Attending Physician (if available) Talk with Attending Physician (if available) Identify Legal Next of Kin and Other Family Representatives Identify Legal Next of Kin and Other Family Representatives No Donation Conversation until MD/Family Make Decisions to Stop Treatment No Donation Conversation until MD/Family Make Decisions to Stop Treatment

5. Care Conferences are huddles with healthcare team. The purpose of these conferences is consistent communication and optimal support of the family. PATIENT CARE CONFERENCES

6. What does the family know about the patient’s condition and medical plan? First person consent? Legal Next of Kin & Family Dynamics Who else is involved? Chaplain, Social Worker, Childlife, Palliative Care, Rathbun House PATIENT CARE CONFERENCE #1 Once the care team has basic patient info. Establish that the patient is a potential donor and LifeShare is engaged.

7. People with significant medical histories cannot be donors.

8. Ensure that legal decision makers are present and prepared for the news. Evaluate the family’s understanding. Ensure that organ donation is NOT a part of this conversation. Communicate timeframes clearly. Evaluate DCD potential. PATIENT CARE CONFERENCE #2 When a plan is made for brain death testing or withdraw of support. Prepare family for declaration of death or final decisions to withdraw care.

9. Doctors won’t work to save my life if I am a registered donor.

10. Ensure family understanding of declaration of death or futility. Allow for Decoupling. Who is the Legal Next of Kin? Who are the supporting family members? Who initiates the donation discussion? PATIENT CARE CONFERENCE #3 After physician determines brain death or futility of treatment. Prepare to discuss the offer of organ donation with the family.

11. The process of allowing the family time to accept the poor prognosis and the options presented to them for continued care or comfort care before discussing the offer of donation. DecouplingDecoupling

13. INITIATION OF THE DONATION DISCUSSION

14. Determine what barriers are present: Education, Acceptance of Death Give Time for the Family to Compose Affirm Commitment to Support Patient’s Wishes if at all Possible PATIENT CARE CONFERENCE #4 After the initial approach, when a first person disclosure is not supported. Prepare for reapproach if necessary.

15. The decision to donate is always up to the family.

16. Confirm attending physician is still managing and will declare in OR. Communicate Family Needs with care team including OR staff: Timing, Present in the OR, etc. Communicate with OR staff about how to prepare for withdrawal. PATIENT CARE CONFERENCE #5 After family consents to DCD and plans for recovery have been agreed upon Preparation of Healthcare Team for Donation after Cardiac Death (DCD).

17. AT THE END OF THE DAY… Our goal is to holistically support families through this vulnerable time in their lives. We strive to achieve this goal with genuine compassion, so that through the process of family support, we germinate healing. Through the process of organ donation we: