First-Person Authorization and DCDs Amanda Cole, RN, BSN, CCRN, MPH Organ Procurement Coordinator Lifesharing

Lifesharing Authorization Data Eligible Authorization Rates Registered Donors (FPA) Data Source: National DSA Dashboard, July 2018

FPA All Approaches Data Source: Internal MRR Database n=39 n=41 n=59

Case Study - Admitted 7/18/2019 – 1541 Referral 7/20/2019 – 0142 55F, Assault with SAH/SDH Intubated during craniotomy same day Referral 7/20/2019 – 0142 Hospital referral to OPO - neuro insult and plan to withdrawal care On site 7/20/2019 – within 1 hour Patient is registered in California History – ESLD, COPD/Asthma, past CVA Neuro – Pupils unequal/reactive, +c/g/obv, decorticate posturing Plan to withdrawal care that afternoon Admitted 7/18/2019 – 1541 55F Assault with SAH/SDH Intubated during Craniotomy same day Referral 7/20/2019 – 0142 Hospital notified OPO for neuro insult and plan to withdrawal care Response to page 7/20/2019 – 0156, assistant coordinator sent on site On site 7/20/2019 – 0240 On site assessment 7/20/2019 – 0240 Patient is registered in California History – End stage liver disease, COPD/Asthma, past CVA Neuro – Pupils unequal/reactive, +c/g/obv, decorticate posturing Made Full care/DNR on 7/19/2019 Plan to withdrawal care early afternoon 7/20/2019 DCD evaluation – kidney function good, plan to have OPC on site in morning

7/20/2019 – Morning No family on site, staff states family is waiting on 1 more person to arrive and then plan to withdrawal immediately 7/20/2019 – 09:00 Huddle 7/20/2019 – 09:20 Phone approach, LNOK verbally authorized donation 7/20/2019 – 10:45 BSRN reported that LNOK has changed mind on donation… 7/20/2019 – 0845 OPC on site, staff states family is waiting on 1 more person to arrive an then plan to withdrawal immediately 7/20/2019 – 0900 Huddle with AOC, FS in office (45 min drive from hospital), plan for FS to phone approach with LNOK Daughter 7/20/2019 – 0920 FS spoke to daughter at length about the incident, her life, medical examiner, resources and then discussed donation by explaining that patient was registered and had potential to save lives. LNOK knew patient was registered and wanted to donate, process and timing (24-36 hrs) was discussed. Plan to meet at hospital after 1030. 7/20/2019 – 1045 FS on site with OPC, BSRN reported to OPC that LNOK has changed mind on donation…

7/20/2019 – 11:15 OPO Team meet with family Daughter stated that they had changed their mind about donation Two immediate concerns: Patient’s organs weren’t good enough Timing Our response: Explained organ function for transplant, using specific recipient example We asked “hypothetically” if they could donate today would they want to proceed They immediately said yes, and we said outcome was not a promise, but we would make some calls and try 7/20/2019 – 1115 FS and OPC met with very pregnant LNOK Daughter and Pt’s Brother in private room on unit Daughter told us that they had changed their mind about donation, so we asked what their concerns were Two immediate concerns: Viability of patient’s organs and safety of recipients Timing. Family had their mind set on saying goodbye that day, they did not think they could handle waiting another day, or even until later that night Our response: We explained organ function and that even though her liver was failing her kidneys would be a life-changing gift to someone on dialysis. Also used specific recipient example We asked “hypothetically” if they could donate today would they want to proceed They immediately said yes, and we said it was not a promise, but we would make some calls and try.

Withdrawal time set for 10pm 20 family members present Process was aided by: Kidneys only viable organs Morning phone authorization got process started Medical Examiner notified after phone approach Blood sent at noon Ample staffing available to help Process was hindered by: Family timeline needed to be that day Hospital ICU MD tried to talk family out of withdrawal Difficulty getting hospital ABO results Kidneys were the only organ acceptable for transplant in this patient. Liver – ESLD Lungs – Poor ABGs, pneumonia, Hx: Asthma/COPD AOC agreed to do an expedited DCD, but attempt to set withdrawal time so that we would have serology resulted OPC had sent for Medical Examiner Clearance after the verbal yes via phone Serology/ABO drawn immediately after sit down meeting, 7/20/2019 – 1200 Withdrawal plans were temporarily de-railed by rounding MD who tried to talk the family out of withdrawal, family again decided on withdrawal, authorization paperwork/DRAI done after 1600 Original plan was to set withdrawal time for 2300 (to allow for seros), LNOK was pregnant and unsure she could wait, plan for withdrawal at 2200 ICU MD ordered basic serology to be run by hospital that morning for us Hep B, Hep C, HIV all negative Hospital ABO x2 ordered and printed in case ABO had not resulted Medical Examiner Clearance at 1551 Serology/ABO results in at 2046 Kidney list run at 2130, offers sent Patient extubated at 2232 in PACU with approximately 20 family members present Patient did not expire within 60 minutes, family updated Family expressed extreme gratitude for allowing possibility of donation Patient was moved to a step-down unit to continue end of life care Withdrawal time set for 10pm 20 family members present Patient did not expire but family was extremely grateful

Lessons Learned Reasons for family opposition to FPA can sometimes be mitigated quickly Early conversations with family re: FPA are essential Approaching families when they are “ready to withdraw” can be a dis-service to family and donor OPOs should guide hospitals to allow for OPO staff to engage families earlier in end-of-life conversations

Applications Talking about patient’s “decision” instead of their “wish” Using concrete examples about recipients to explain concerns, instead of just answering with facts Asking hypothetical questions (re: timeline, designated donation, etc..) can make family think more in depth about decision Inform family about FPA and describe process to families after goals of care discussion, even if no decisions have been made

Thank you!