Brain Death: An Update on New Important Initiatives

1. Brain Death:An Update on New Important Initiatives Community of Practice Action Leader Meeting Organ Donation & Transplantation Alliance Nashville, TN March 19, 2013 You must be one of Dr. Frank’s patients! Jeffrey I. Frank, MD, FAAN, FAHA Professor of Neurology and Neurosurgery Director, Neurocritical Care University of Chicago Medicine

2. Disclaimer • I am NOT a passionate about organ donation advocate • My presence at this meeting IS NOT about enhancing organ donation • My passion and presence IS about my role in: • Improving contemporary understanding of brain death • Assuring integrity in brain death diagnosis and patient/family management through better education of physicians and nurses, and better uniformity of policies • Implications for organ donation but it NOT ABOUT organ donation (ODMT: DDWG)

3. Pre-Ventilator Era Any process that arrested breathing led to asystole and a cold, blue corpse Apnea Asystole

4. Ventilator Era (1960’s) ? 1928 1952 1972 Now patients with severe brain dysfunctionwereon ventilators!

5. Spectrum of Brain InjuryWith Mechanical Ventilation Moderate: Awake or drowsy with disability Major: Coma with some brain function Extreme: No discernible brain function Required Definition

6. Brain Death History Harvard Report (1968) NIH Collaborative Study (1977) President’s Commission Report (1980) “Irreversible Coma” No brainstem reflexes “Flat” EEG Proposed brain death Defined the futility of brain death Affirmed the validity of brain death Proposed guidelines on how to approach brain death diagnosis Uniform Declaration of Death Act

7. Uniform Declaration of Death Act (1980) Basis for Brain Death Law Dead if irreversible cessation of either: Circulatory and respiratory functions, or All functions of the entire brain, including brain-stem (brain death) BRAIN DEATH IS THE IRREVERSIBLE CESSATION OF WHOLE BRAIN FUNCTION (HEMISPHERES AND BRAINSTEM)

8. 1995 AAN Creates Practice Parameter: Guideline

9. Brain Death in the U.S. President’s Commission Report UDDA Harvard Report NIH Study 1920 1965 2012 Transplant Reality Iron Lung Invented Modern mechanical ventilation (critical care) CT Scanner Invented Societal Evolution and Acceptance (death with a heart beat) Irreversible cessation of whole brain function = Death Real mechanism of death Can be reliably diagnosed Paradigm Shift

10. Brain Death Today Mechanism of death: Widely accepted Diagnosis: Important; Independent of OD Contemporary Imperative Mandatory, accurate, and expeditious diagnosis Respect for process Proactive management of physiology Thoughtful interaction with family/surrogates Thoughtful sequencing of involvement of health care teams and OPOs Profound variability in policy and practice

11. Guideline performance • Pre-clinical testing • Clinical examination • Apnea testing • Ancillary testing

12. Physicians Responsible for Brain Death Diagnosis

13. Preclinical Testing: Compliance with AAN Guidelines

14. Clinical Exam:Compliance with AAN Guidelines

15. Apnea Testing:Compliance with AAN Guidelines

16. Ancillary Testing

18. Variability in BD Determination Practice: a review of 226 brain dead organ donors (2011) Claire Shappell MS2, Jeffrey Frank MD

19. AAN Approach to Determining Brain Death Loss of respiratory drive Pupillary Known Cause Doll’s Eyes Cold Water Calorics Specific method of testing for apnea Irreversible Corneal Gag Cough “Pre-Requisites” Rise in CO2 with no breaths observed Neuroimaging compatible Motor

20. Sometimes, Part 4 Ancillary Tests • Nuclear Medicine Blood Flow Study • Electroencephalography (EEG) • CT Angiography • Conventional Angiography Required ONLY if clinical examination or apnea testing cannot be fully performed

21. Results: Overview and Part 1

22. Results: Brain Stem Reflexes Mean # of reflexes documented: 6 ±1.2 All reflexes documented (7 of 7): 101 (44.7%)

23. Apnea and Ancillary Studies

24. Putting it all together • All Brain Dead Organ Donors • n=226 • Coma • Cause Known • n=217 • Normothermic • (≥36°C) • n=184 • Reflexes Absent • ± Redundant • n=157 • Apnea Test OR Ancillary Study • n= 151

25. Conclusions • 36.7% documented adherence to all AAN practice recommendations for brain death diagnosis • 66.8% documented adherence to AAN recommendations with weaker brain stem reflex standard (± redundant reflexes) • At least 1/3 of brain death determinations do NOT have documentation of necessary features of brain death

26. What are we doing to improve the field? • Educational/training endeavors • Web-based training: Acute Review (CCF, Prpvencio) • Webinars: Frank, Greer, Goldenberg, Provencio • Simulation training: • Basic training (Yale, Greer) • “Champions”: Training Leaders (UofC, Frank, Goldenberg)

27. Brain Death Simulation Training November 12, 2012 Second International Brain Death Simulation Workshop: Training Future Leaders

28. What are we doing to improve the field? • Educational/training endeavors • Web-based training: Acute Review • Simulation training: Basic training • “Champions”: Training Leaders • Creation of a national/international standard • Re-evaluate protocols since the 2010 AAN Practice Parameters (WE NEED YOUR HELP) • Lobby at a national level for uniformity • Brain Death Ethics Subcommittee of NCS • Taking leadership/ownership regarding Brain Death • Education, Advocacy, Policy

29. Adaptation to Technology Perioperative MI and Cardiac Arrest End-Stage Cardiomyopathy VAD Insertion Death of Heart Muscle: Permanent Asystole • Post-Event Scenario • Permanent asystole • Maintained perfusion through VAD • Brain with continued blood flow Continuous Flow Ventricular Assist Device • Systemic perfusion • No heart beating Heart stops but device maintained systemic perfusion = Alive Heart Stops = Dead Brain Death = Dead

30. Summary • Brain Death is an Important Diagnosis • Shift in accountability and responsibility for the integrity of brain death diagnosis, patient/family management, and policies/advocacy • Educational efforts • Academic efforts • Policy change • Better uniformity “Growth means change and change involves risk, stepping from the known to the unknown”