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January 25, 2017 l 1
Defining Death, Aid in Dying, and
Family Rights
Paul J. Ford, PhD
Interim Chair, Department of Bioeth...
January 25, 2017 l 2
Jahi McMath, pronounced dead years ago, is
'healthy,' new photo claims
Josh Hafner, USA TODAY 3:21 p....
l January 25, 2017 l 3
Two Challenging Cases Involving Children
• Jahi McMath
• 12 year old girl declared dead December 12...
Jahi McMath
• Legal actions continue in Federal and California State
Courts.
• An order handed down in the Federal Civil R...
l January 25, 2017 l 5
Greer DM, Wang HH, Robinson JD, Varelas PN, Henderson GV, Wijdicks EFM. Variability of Brain
Death ...
Jerika Bolen
• Disability rights groups petitioned social services to
intervene on the basis of neglect
– Also, Not Dead Y...
Physician Aid in Dying Laws (USA)
• Colorado: End-of-life Options Act
– 64.87% of the voters approved Proposition 106, Col...
Medical assistance in dying (Canada)
• Criminal Code (clarifying that is is not a crime)
• 18+ years old and can make own ...
Canada continued
• “There are more complex issues that are not
addressed in the legislation. These issues have unique
risk...
A few final comments (forward looking)
Brain Death (neurological criteria for death)
• If Jahi McMath is declared alive, t...
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Paul Ford, "Defining Death, Aid in Dying, and Family Rights"

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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

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Paul Ford, "Defining Death, Aid in Dying, and Family Rights"

  1. 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. 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. 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. 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/ l January 25, 2017 l 4
  5. 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. 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) l January 25, 2017 l 6
  7. 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 l January 25, 2017 l 7
  8. 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 l January 25, 2017 l 8
  9. 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…” l January 25, 2017 l 9
  10. 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. l January 25, 2017 l 10

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