January 23, 2017 The Fifth Annual Health Law Year in P/Review symposium featured leading experts discussing major developments during 2016 and what to watch out for in 2017. The discussion at this day-long event covered hot topics in such areas as health policy under the new administration, regulatory issues in clinical research, law at the end-of-life, patient rights and advocacy, pharmaceutical policy, reproductive health, and public health law. The Fifth Annual Health Law Year in P/Review was sponsored by the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School, Harvard Health Publications at Harvard Medical School, Health Affairs, the Hastings Center, the Program On Regulation, Therapeutics, And Law (PORTAL) in the Division of Pharmacoepidemiology and Pharmacoeconomics at Brigham and Women’s Hospital, and the Center for Bioethics at Harvard Medical School, with support from the Oswald DeN. Cammann Fund. Learn more on our website: http://petrieflom.law.harvard.edu/events/details/5th-annual-health-law-year-in-p-review

1. January 25, 2017 l 1
Defining Death, Aid in Dying, and
Family Rights
Paul J. Ford, PhD
Interim Chair, Department of Bioethics, Cleveland Clinic
Director, NeuroEthics Program, Cleveland Clinic
Lecturer, Harvard Medical School, Winter 2017
Email: fordp@ccf.org Web: www.clevelandclinic.org/neuroethics

2. January 25, 2017 l 2
Jahi McMath, pronounced dead years ago, is
'healthy,' new photo claims
Josh Hafner, USA TODAY 3:21 p.m. ET March 21, 2016
Is Wisconsin teen's decision to die a turning
point?
Greg Toppo, USA TODAY 6:11 p.m. ET Sept. 7, 2016 | Updated
12:15 p.m. ET Sept. 8, 2016
http://www.usatoday.com/story/news/2016/09/07/wisc-teens-decision-die-turning-point/89974124/
http://www.usatoday.com/story/news/nation-now/2016/03/21/jahi-mcmath-pronounced-dead-years-ago-healthy-
new-photo-claims/82082798/

3. l January 25, 2017 l 3
Two Challenging Cases Involving Children
• Jahi McMath
• 12 year old girl declared dead December 12, 2013
• Continues on artificial support
• Ongoing legal action
• Jerika Bolen
• 14 year old girl dies in hospice September 2016
• Spinal Muscular Atrophy – Type 2 (not generally thought
of as terminal)
• Had a “Prom” during the summer

4. Jahi McMath
• Legal actions continue in Federal and California State
Courts.
• An order handed down in the Federal Civil Rights
Lawsuit as recently at December 12, 2016 (exactly 3
years after her declaration of death)
• Links to primary legal materials collected by Thaddeus
Mason Pope, JD, PhD
(http://thaddeuspope.com/braindeath/jahimcmath.html)
• Jehi McMath Facebook page:
https://www.facebook.com/keepJahiMcmathonlifesupp
ort/
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5. l January 25, 2017 l 5
Greer DM, Wang HH, Robinson JD, Varelas PN, Henderson GV, Wijdicks EFM. Variability of Brain
Death Policies in the United States. JAMA Neurol. 2016;73(2):213-218.
doi:10.1001/jamaneurol.2015.3943

6. Jerika Bolen
• Disability rights groups petitioned social services to
intervene on the basis of neglect
– Also, Not Dead Yet “Statement On Mourning the Death of
Jerika Bolen,” September 23, 2016 by Diane Coleman
(http://notdeadyet.org/2016/09/statement-on-mourning-the-death-of-
jerika-bolen.html)
• Jerika’s choice not to go back on a ventilator and then
become hospice eligible. The SMA Type 2 not
considered terminal (generally)
• She would not have been eligible for aid in dying/death
with dignity in the states currently with laws (OR, WA,
VT, CO, CA)
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7. Physician Aid in Dying Laws (USA)
• Colorado: End-of-life Options Act
– 64.87% of the voters approved Proposition 106, Colorado
End of Life Options Act.
– Implementation began December 16, 2016.
• Vermont: Patient Choice At End Of Life
– A July 2016 Sunset provision of the original 2013 legislation
was removed
–Data will be reported in 2018
• California: End of Life Option Act
–“The bill would also authorize a health care provider to
prohibit its employees…” 443.15
https://leginfo.legislature.ca.gov/faces/billNavClient.xhtml?bill_id=201520162
AB15
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8. Medical assistance in dying (Canada)
• Criminal Code (clarifying that is is not a crime)
• 18+ years old and can make own medical decisions
• Do not need to have a fatal or terminal condition to be
eligible for medical assistance in dying.
• People with a mental illness are eligible for medical
assistance in dying as long as they meet all of the
listed conditions.
– However, not eligible for this service if: suffer only from a
mental illness; death is not reasonably foreseeable;
mental illness reduces medical decision making
• http://healthycanadians.gc.ca/health-system-systeme-sante/services/end-life-care-
soins-fin-vie/medical-assistance-dying-aide-medicale-mourir-eng.php
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9. Canada continued
• “There are more complex issues that are not
addressed in the legislation. These issues have unique
risks and considerations that need further examination.
These issues are:
– requests by mature minors
– advance requests
– requests where mental illness is the sole underlying
condition
• The legislation requires the federal government to
initiate independent reviews of these complex and
sensitive issues which are outside the scope of the
new law… December 13, 2016, the federal
government announced that these reviews will be
conducted by the Council of Canadian Academies…”
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10. A few final comments (forward looking)
Brain Death (neurological criteria for death)
• If Jahi McMath is declared alive, then what?
– Does the case require a reevaluation of testing or concepts?
• Ongoing tension about organ transplant policy
Death with Dignity / Physician Aid in Dying
• Continue conversation about a balance for “vulnerable”
populations
– Protect but do not keep from a good
– Kim SYH et. al. Euthanasia and Assisted Suicide of Patients
With Psychiatric Disorders in the Netherlands 2011 to 2014.
JAMA Psychiatry. 2016;73(4):362-368.
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