UDDA. Less. 2 parts. Part 2. Part 1. Roadmap. well settled. growing. Resistance to BD is. Brain Death Hard Cases & Legal Challenges 4/9/2018

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Carmel Hutchinson
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1 Brain Death Hard Cases & Legal Challenges Harvard Medical School Annual Bioethics Conference April 12, 2018 Thaddeus Mason Pope, JD, PhD UDDA 2 Alex Capron well settled Less well settled Roadmap 2 parts Part 1 Resistance to BD is growing Part 2 1

2016 (200) 50% report families request organ support after BD families of.

2 5 legal attacks on BD Least Most serious Growing resistance More families dispute BD NEUROLOGY Aug (200) 50% report families request organ support after BD families of... patients determined... dead by neurologic criteria... rejected this diagnosis Chest (2015) 147(4): J Clin Ethics (2014) 25(3):

3 family... asked... to deviate from standard procedures following BD Conflict: 10% 56 BD cases More conflict Many cases to court Types of 5dispute Attack 1 of 5 25 Confusion Mistrust Lots of these cases 3

4 Just 1 example Lisa Avila Wrong before wrong now too Injunction against removing ventilator Accept neutral opinion Lisa Avila Law buy time That s 1 st attack on BD 4

5 Attack 2 of 5 Want religious exemption 37 [D]eath... shall not be declared... neurological criteria... violate... personal religious beliefs.... Religious objection No death by BD Contrast CA, NY, IL Dead Temp duty treat 24-48hr Reasonable accommodation after BD 5

6 NJ Opposite Changes definition itself Pt may satisfy BUT BD criteria 50 May not declare death Until death by CP criteria Exemption Not mere accommodation Rejected everywhere outside NJ 6

7 Motl Brody (DC) Shahida Virk (Mich.) 56 Cho Fook Cheng (Mass) California rejected (twice) BUT 3 1 active cases 61 7

8 Ontario cases Shalom Ouanounou BD guidelines failed to... accommodate Shalom s express religious beliefs,... violate... constitutional and human rights 2 Taquisha McKitty Apostolic Pentecostal Submitted 3 Awaiting decision 8

removal of CP support... unconstitutional.

.. first amendment Appellate briefing now

9 Pic stinson Pic others SF KY etc Click click click Israel Stinson Plaintiffs are Christians with firm religious beliefs... heart is beating, Israel is alive. removal of CP support... unconstitutional... interferes with... freedom of religion... first amendment Appellate briefing now May see more of these cases That s 2 nd attack on BD 9

10 Attack 3 of 5 Must clinicians obtain consent for BD tests? How is this relevant? Watergate tapes were damning Try avoid release in 1 st place Could not avoid impeachment once released 10

this strategy Clinician duties after BD Limited 94 After a patient.

11 Refuse consent to avoid bad consequence Similarly Some try to prevent BD diagnosis Why? this strategy Clinician duties after BD Limited 94 After a patient... brain dead... medical support should be discontinued. once death... diagnosed... discontinue support... all medical interventions should be withdrawn. 11

12 Consent not required Dead Not a patient Not a patient No Tx duty Bright line rule No post-bd treatment rights Focus on pre-bd rights Apnea test Final confirmatory test 12

13 BUT More family refusals Parental refusals Almost all pediatric No apnea test No BD No BD Treatment duties continue until CP 13

14 Practically, same as NJ religious exemption Opt out BD No apnea test ancillary tests But same consent question Must clinicians honor the refusal? Do clinicians need consent for apnea test? split Yes Allen Callaway 14

15 Billings, Montana 6-year-old Drowned July 22, 2016 Mom: no request... permitting... testing... is denied mother has sole authority to make medical decisions... including... brain functionality examinations Transferred home 15

16 Do clinicians need consent for apnea test? MT said yes KS also said yes Brett Shively 2yo drown Wichita, 2006 Forbid brain viability exam TRO - 02/01/06 D/C home - 03/17/06 Do clinicians need consent for apnea test? CA also said yes 16

Aug. 9, 2016 to CHLA MT, KS, CA said yes Neurology

17 Alex Pierce - drowned Refuse apnea test Pic stinson Pic others SF KY etc Click click click Israel Stinson Aug. 9, 2016 to CHLA MT, KS, CA said yes Neurology Aug (8) ¼ neurologists say need consent No 17

18 VA said no Mirranda Lawson Richmond, Virginia 2-year-old Choked popcorn - May 11, 2016 Dad: no Richmond Circuit Court June 10, 2016 Hospital is... allowed to administer the apnea test 18

19 Almost got first appellate guidance BUT CP death dismissed Do clinicians need consent for apnea test? VA said no NV also said no Already amending NUDDA Saw what was happening MT, VA 19

20 A.B. 424 (June 2, 2017) determination of the death... is a clinical decision that does not require the consent of the person s... representative.... Do clinicians need consent for apnea test? YES California Kansas Montana NO Nevada Virginia McKinley 20

21 Apnea refusal dangerous Med Mal That s Attack 3 rd attack 4 of 5 on BD 185 Jahi McMath Dec. 12, 2013 Declared dead 187 Lost lawsuits against hospital

organ support Mar. 2015 Med Mal lawsuit 4.5 years!

have medical expenses Re-litigate status as alive

22 Map declare dead t.f on ophys sup to NJ Transferred to NJ Sustained organ support Mar Med Mal lawsuit 4.5 years!! 192 future medical expenses Dead people do not have medical expenses Re-litigate status as alive Collateral estoppel Chance to prove Triable issue... whether changed circumstances 22

2 1 201 theories Does not attack the AAN criteria themselves No longer meets AAN criteria AAN = UDDA Jahi AAN

23 theories Does not attack the AAN criteria themselves No longer meets AAN criteria AAN = UDDA Jahi AAN Argument over facts, not law If alive, must reexamine medical criteria for BD Dead at T1 Not dead at T2 Problem 23

24 Death 2 should be irreversible most likely fail BD exam Attack not only application BD exam to Jahi Attack legitimacy exam itself Jahi = AAN AAN UDDA That s 5 th challenge Attack 5 of

25 Most serious attack Are medical criteria for BD legally sufficient? Reno Reno, Nevada pic Aden Hailu April 1, 2015 Catastrophic anoxic brain injury during exploratory laparotomy 221 May 28, 2015 Met AAN criteria for brain death 222 Dad loses Dad: she is not dead

are not the right criteria Supreme Court of Nevada November 2015 230

26 Trial court AAN criteria met Aden is dead Dad appeals Nevada Supreme Court Dad wins Irrelevant if Aden meets AAN criteria They are not the right criteria Supreme Court of Nevada November reasons AAN does not measure what the UDDA requires UDDA

fetus Heal wounds Fight infections Stress response AAN measures only

27 irreversible cessation... all functions of... entire brain BUT 236 Brain dead people do stuff 237 Gestate a fetus Heal wounds Fight infections Stress response AAN measures only cessation some functions of part of brain Supposed to measure: all functions entire brain 2 UDDA

246 Number of physicians Qualifications How tests administered Hailu =

28 must be made in accordance with accepted medical standards BUT Trial court did not consider whether AAN are accepted medical standards Number of physicians Qualifications How tests administered Hailu = AAN AAN UDDA 249 SCT did not hold Remand for evidentiary hearing BUT

29 CP death Court throws BD into doubt But no resolution uncertainty Nevada legislature steps in A.B BUT Addressed only 1 1 of 2 problems identified by supreme court 29

30 accepted medical standards AAN / AAP 2 authoritative criteria 263 Legal standard may demand more than medical criteria What is issue? 267 UDDA irreversible cessation... all functions of... entire brain Deferred to medical profession how to measure

procedures must determine satisfaction of the legal standard Medical criteria drifted too far

31 ULC Act is silent on acceptable diagnostic tests and medical procedures medical profession remains free to formulate acceptable medical practices Discretion not unfettered Tests & procedures must determine satisfaction of the legal standard Medical criteria drifted too far from statute UDDA requires Clinicians measure Medically dead = Legally dead think Legally dead Withdraw OST 31

32 actually Withdraw OST That is door left open in NV Legally dead Jahi McMath Conclusion 5 legal attacks on BD Debate has been academic

critics and skeptics have not gained much traction with

tackling this Now it is a public policy question Not just

practices References Materials from the cases discussed in

33 critics and skeptics have not gained much traction with lawmakers Not true anymore Courts and legislatures are tackling this Now it is a public policy question Not just more scrutiny more debate Reassess settled laws & practices References Materials from the cases discussed in this presentation are available at

34 Medical Futility Blog Since July 2007, I have been blogging, almost daily, to medicalfutility.blogspot.com. This blog focuses on reporting and discussing legislative, judicial, regulatory, medical, and other developments concerning medical futility and end-of-life medical treatment conflicts. The blog has received over 3 million direct visits. Plus, it is distributed through RSS, , Twitter, and republishers like WestlawNext and Bioethics.net. 298 Brain Death Rejected: Expanding Clinicians Legal Duties to Accommodate Religious Objections and Continue Physiological Support, in LAW, RELIGION, AND AMERICAN HEALTHCARE (Cambridge Univ. Press 2017). Brain Death: Legal Status and Growing Conflict, and Court Challenges, 37 JOURNAL OF LEGAL MEDICIN (2017). Legal Standards for Brain Death, 13 JOURNAL OF BIOETHICAL INQUIRY (2016). Brain Death: Legal Obligations and the Courts, 35 SEMINARS IN NEUROLOGY (2015) (with Christopher Burkle). Brain Death: Legal Duties to Accommodate Religious Objections 147 CHEST e69 (2015). Legal Briefing: Brain Death and Total Brain Failure, 25(3) JOURNAL OF CLINICAL ETHICS (2014). Pregnant and Dead in Texas: A Bad Law, Badly Interpreted, LOS ANGELES TIMES (Jan ) (with Art Caplan). Legal Briefing: Organ Donation, 21(3) JOURNAL OF CLINICAL ETHICS (2010). Thaddeus Mason Pope, JD, PhD Director, Health Law Institute Mitchell Hamline School of Law 875 Summit Avenue Saint Paul, Minnesota T C E Thaddeus.Pope@mitchellhamline.edu W B medicalfutility.blogspot.com

Cases 2 and CFR (b) to be eligible to elect hospice care under Medicare, an individual must be... certified as being terminally ill

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