Ethical Considerations in

Brain Death
Joshua Kornbluth, MD
Disclosures
• Financial: None
• Most media used via freely-available sources (Wiki, local,
regional, and national news media)
Ground Rules
• Dialogue > Didactic
• Polite interruptions encouraged
• If you disagree, suggest an alternative
The Plan
• Conceptualize Brain Death
• Discuss Index Cases
• Small Groups
Bioethical Pillars
• Autonomy
• (Distributive) Justice
• Beneficence
• Nonmaleficence (primum non nocere)

• Recognizing society-level and person-level conflicts

 Autonomy and beneficence/non-maleficence
 Autonomy/beneficence and justice

• Futility
“BRAIN DEATH”
• Can you define death?
• ‘What function is so essential that its irreversible loss signifies the
death of the human being?’
• No definition, no criteria
• Consciousness and cognition?
• Historical: 1800s to mid-1900s: “loss of all vital fluid flow’
• Modern: Loss of function of an organism as a whole
• Cellular death?
• Spiritual definition?
Dying ain’t what it used to be
• Dying considered a sacred rite in most cultures
• ~80% of Americans polled said they would prefer to die at home (JAMA 2013)

• By 1949, 50% of deaths in America occurred in institutions

• As of 1958, this increased to 61%
•  In 1990, it was estimated by the American Hospital Association that seven out of ten deaths in
the U.S. were somehow timed or negotiated.

• Nearly 60% die in hospitals, 20% in nursing homes, 20% at home

• Death has evolved from a natural part of the human experience to a “medical failure”
• Fear of dying surpassed fear of death
• Quantity of life > Quality of life
Dying ain’t what it used to be
• SUPPORT trial – JAMA 1995
• Only 47% of physicians knew when their patients preferred to avoid CPR
• 46% of do-not-resuscitate (DNR) orders were written within 2 days of death
• 38% of patients who died spent at least 10 days in an intensive care unit
• For 50% of conscious patients who died in the hospital, family members reported
moderate to severe pain at least half the time. 
Technology
• ICU care, protracted terminal
illnesses
• Organ transplantation
Dead Donor Rule
• “Vital organs should be taken only from persons who are dead” (NEJM 2013)

• “There was no chance at all that our daughter was going to survive. . . . I can
follow the ethicist's argument, but it seems totally ludicrous.” (NY Times Mag
2009)

• Organ Donation in Brain Death vs Donation after Cardiac Death

• Respect for Autonomy and nonmaleficience
Evolution of human death and dying
• ECMO and VADs – you don’t need to ventilate or HAVE A
PULSE to be alive anymore
• Is BRAIN DEATH a thing?
• Does this diagnosis benefit the patient?
• Family?
• Society?
Misdiagnosis: DEATH
• Fear of being wrongly Dx’d as
dead goes back centuries
• Peaked during the cholera
epidemic
• Mistrust of medical system and
fear of illnesses and medical
advances
Brain Death as a Medical Fallacy
Chaussiere’s
bag and mask
for inflation
(1780)

• BD is a truly modern medical

condition
• Q: What lead to Brain Death
being a state?
• A: Modern intensive care
• The concept of brain death did not evolve
Drinker Respirator
to benefit organ transplants (1929)
 J Med Ethics. 2007 Apr; 33(4): 197–200
History of Neurologic Criteria for Death
• First formal paper by Mollaret and Goulon in France in 1959, “Le Coma Dépassé” (“A
State Beyond Coma”). Rev Neurol 1959;101:3-15)
 a definable condition from which recovery was impossible

• Landmark committee at Harvard to develop criteria for death by neurological cause (called
Brain Death).
 Committee formed October 1967
 First meeting March 14, 1968
 Drafts April 11, June 3, June 7, June 13, and June 25, 1968.
 All the elements of the exam we use today did not make into a draft until June 7.
 Published in 1968 (Report of the Ad Hoc Committee of the Harvard Medical School to Examine the
Definition of Brain Death. A definition of irreversible coma. JAMA 1968;205:337-340)
 Wijdicks EF. The neurologist and Harvard criteria for brain death. Neurology. 61(7):970-6, 2003
History of Neurologic Criteria for Death
• The President’s Commission report on “guidelines for the
determination of death” culminated in a proposal for a legal
definition that led to the Uniform Determination of Death Act
(UDDA) (1981). The act reads:
 “An individual who has sustained either 1) irreversible cessation of
circulatory and respiratory functions, or 2) irreversible cessation of all
functions of the entire brain, including the brain stem, is dead.
 A determination of death must be made with accepted medical standards.”
History of Neurologic Criteria for Death
• Most US state laws have adopted the UDDA. Several states have added
amendments.
• The UDDA does not define “accepted medical standards.”
• The American Academy of Neurology (AAN)’s 1995 practice parameter
delineated the medical standards for the determination of brain death.
• Considerable practice variation remains.
Brain Death a Legal Fiction?
• New Jersey (1991):
 "the death of an individual shall not be declared upon the basis of neurological criteria
when … such a declaration would violate the personal religious beliefs of the individual.“
(N. J. Rev Stat. § 26:6A–5)

• New York (1984)

 Each hospital must "establish written procedures for the reasonable accommodation of the
individual's religious or moral objections to use of the brain death standard" when such an
objection has been expressed by the patient or surrogate
 (NYDOH and New York State Task Force on Life & the Law. Guidelines for Determining Brain Death. Nov. 2011.)

• California (1974)
 2009 - Requires that general acute care hospitals adopt a policy for providing family with a
"reasonably brief period of accommodation" after a patient is declared brain dead
 However, if the patient's family voices any “special religious or cultural practices and
concerns.” the hospital must make "reasonable efforts to accommodate those religious
and cultural practices and concerns.” Cal. Health & Safety Code § 1254.4(a-c))
(
Determination of Death by Neurologic
Criteria
• To determine “cessation of all functions of the entire brain,
including the brain stem,” physicians must:
 determine the presence of unresponsive coma
 determine the absence of brainstem reflexes
 determine the absence of respiratory drive after a CO2 challenge

• To ensure that the cessation of brain function is “irreversible,”

physicians must:
 determine the cause of coma
 exclude mimicking medical conditions
 observe the patient for a period of time to exclude the possibility of recovery
Brain Death Assessment
1. Clinical exam confirming coma, apnea
2. Ancillary bedside tests – atropine challenge, vasopressin deficiency
3. Ancillary Imaging studies

Prog Neurorad 2009 JNMT 2013

Brain Death Assessment
Clinical suspicion

Conversation with family about diagnosis/prognosis

Avoid euphemisms

Perform testing

Deliver news

Offer support, encourage healthy grieving

Withdrawal of physiologic support vs Organ procurement

 Respect for other cultures
• Different spiritual and cultural beliefs play a big part of determination of death
• China: First case of declaration of BD in 2003 (Xinhua News Agency April 16, 2003)
 “They consider it a waste of time and money to save a patient with no brain and brainstem function”
 Definite guidelines and legislation are still in development
 In one study of 37 BD patients: “there were no cases of organ donation. Thus, the requirement for [sic]
diagnose BD as soon as possible is few. The advantage of BD diagnosis is that the families and hospitals
can stop unnecessary treatment. Yet, there were also some families who could not believe that BD was
equal to real death. They asked for continuous active treatments. In our study, some patients lived on
ventilators for 10 days.” (Chinese Medical Journal 2015)

• “Brain Death” is an English term that doesn’t always translate well idiomatically into other
languages
Problematic Terminology
• Brain Death vs Brain Stem (bulbar) Death
• Irreversible apneic coma.
• “Hopelessly Unconscious” - NEJM 1968
• Move to rename brain death. Emphasis on “death” rather than on “brain”
 Death by neurological criteria
 Death by circulatory criteria

• “Brain dead” has been inappropriately used to describe other states

 PVS (Terri Schiavo)
 Minimally conscious state
 Someone who isn’t very intelligent
 Medical Evidence for Uncertainty
• Whole Brain Death vs Brain Stem Death
• Bedside clinical evidence vs physiological evidence
• ~50% of patients in one review showed evidence of hypothalamic function in
BD patients by proving secretion of ADH (J Intensive Care Med. 2014)
• Safety of apnea test has been called into question as promoting cerebral
ischemia and herniation (Pediatr Crit Care Med. 2010)
• “it is reasonable to suggest that the apnea test itself can result in failing the
apnea test, creating a self-fulfilling prophecy” ( J Child Neurol. 2010)
• Some have postulated that lower medullary centers can remain hypoxia-
sensitive despite CO2 insensitivity
Ethical Questions so Far
Should legality determine ethical permissibility?

Doctors taught to be healers (historically), curers (modernity), are we qualified to diagnose end of life?

Who is qualified to diagnose BD?

In CC medicine we obviously care for families in addition to patients. Does removal of physiologic
support immediately after pronouncement benefit/harm patient? Family?

Is there too long to wait?

Are we too paternalistic? Patients can choose any life they want, can they choose any death they want?

Nair-Collins. Kennedy Inst Ethics J. 2013 Mar;23(1):53-104.

Ethical Questions so Far
Physician’s religious/cultural opinions?

Patients religious/cultural opinions?

Families religious/cultural opinions?

Second opinion regarding BD?

Resource utilization for BD person?

What if they are an organ donor?

What about when family members disagree among themselves with BD diagnosis?
Case Examples
Problematic Terminology and the Case of
Marlise Munoz
• Nov 26, 2014 – 33F found
unresponsive, presumably due to PE
 Found to be 14wks pregnant
 Declared Brain Dead Nov 28
 The hospital refused to withdraw ventilation,
citing a Texas law which required that
lifesaving measures be maintained if a female
patient was pregnant—even if there was
written documentation that this was against
the wishes of the patient or the next of kin.
Problematic Terminology and the Case of
Marlise Munoz
• On January 26, 2014 NBC news
reported: “A pregnant woman
who lapsed into a braindead state
late last year was removed from
life support on Sunday after a
Texas hospital complied with a
judge's order to disconnect her
from the machines keeping her
alive.”
http://www.organfacts.net/
Isaac Lopez
• 6/29/14 – 2 month old presented with skull fracture, rib fractures, respiratory
failure, cardiac arrest, and severe TBI in Kentucky
• Issac's father was arrested for child abuse after admitting to having hit Issac's
head against the bathtub
• Admitted to PICU after ROSC, ultimately declared brain dead
• Honoring family’s request, a second exam was deferred to 48h
• Mother files suit.
• Isaac’s father’s objection was thought to be clouded by his desire to avoid
homicide charges
• The hospital then filed its own separate action asking the court to allow the
removal of physiological support given that Issac was dead.
Isaac Lopez
• Issac's mother and a court-appointed guardian argued that the hospital could
not stop Issac's physiological support because parents have a constitutional
right to make medical decisions for their children.
• They argued that because Issac's parents had not had those rights terminated,
they possessed sole decision making authority with respect to Issac's medic
• The court rejected this position stating that "with death, no parental decision
making survives (save decisions regarding burial)."
Jahi McMath
• 12/9/13 - 13F admitted for elective
tonsillectomy and adenoidectomy
• Complicated by severe bleeding, anoxic
brain injury
• 12/12/13 – declared Brain Dead by 2
physicians
• Family was in disagreement and sought
legal counsel to block hospital from
withdrawing mechanical ventilation
• Argued that the law was unconstitutional
because it violated their religious beliefs
Jahi McMath
• Family requested outside consults
• Notably Dr. Paul A Byrne, court denied request
• Independent exam by Dr. Paul G. Fisher
showed flat EEG, no cerebral blood flow, apnea
• Court granted extension to physiologic support
to help family grieve
• While ventilated, body released to coroner and
the back to family intubated
• Family sought tracheostomy at undisclosed
location
• Dead patients don’t have health insurance. Who
pays?
Jahi McMath
• Autonomy and personhood
• Distributive Justice
• Beneficience
• Nonmaleficence
• Respect for religion and culture
• What is the extent of “reasonable
accommodations?
• Our perceptions of futility vs family’s
Jahi McMath
http://www.nj.com/somerset/index.ssf/2015/03/family_for_jahi_mcmath_files_lawsuit.html
Reasonable Accommodations….
• JAMA 2008
• 19F admitted for elective brain surgery complicated by post-op ICH
• Declared Brain Dead
• Family lived in another country, decision was made to maintain physiologic support until family arrived, including
her father who had power of attorney
• The father requested that the ventilator be continued and asked the treating team to administer a purported
traditional Chinese medicinal substance to the patient. The father explained that the substance is often used in his
native country for a range of conditions, including coma.
• He asked the treating team to combine “the best of Western and Eastern medicine” to benefit his daughter.
• The patients’ relatives in the US supported the father’s request.
• In response to the unusual nature of this request, the treating team called an ethics consultation to consider
whether to administer the substance for 2 or 3 days while maintaining the patient on the ventilator
Reasonable Accommodations….
• Futility?
• “The physician is not an all-purpose technical extension of the patient’s will and
interests, but a professional committed to the good of health and the relief of suffering
by the application of the medical sciences using sound clinical judgment”
• Autonomy – a patient or surrogate can refuse almost all treatments, but this respect does
not require the physician to administer all possible treatments.
• Can we practice compassionate futility?
Zack Dunlap
• 11/2004 – 21M involved in ATV accident
• 36h after, declared Brain Dead by a local
surgeon, including cerebral flow studies
• While being wheeled out to OR for organ
harvesting, a family member ran a pocket
knife over his foot and it moved.
• RN assured family it’s a reflex
• Then pinched his finger and he moved
across his body
Zack Dunlap
• Went home 48d later

• “I was dead, but I feel much better

now”
• Multiple media stories (Dateline, Today
Show, etc.) of “miracle”
• What do you think happened?!?
• Concern for qualification of doctor to
diagnose brain death
Colleen Burns
• Oct 16, 2009 – 41F arrives after a drug overdose including Xanax, Benadryl and a
muscle relaxant, hypothermic
• Seizures followed
• She was declared brain dead (details are lacking), and family consented to organ donation
• En route to OR, she woke up.
• Released home 2 weeks later
• HHS investigation: "The patient did not suffer a cardiopulmonary arrest (as documented)
and did not have irreversible brain damage," the HHS report concluded. "The patient did
not meet criteria for withdrawal of care."
• HHS fined the hospital $6000 for improperly implementing brain death protocols
• NEGLIGENCE
Summary
• Death by neurological criteria (Brain Death) remains confusing and controversial
• Maybe we don’t understand it as well as we think we do
• It’s a serious, perhaps the MOST serious diagnosis we can make
• Other medical conditions have benefited from advances in science to make more accurate Dx,
should Brain Death be the same?
• Many members of the lay public and the media have major misunderstandings
• Many clinicians do not fully understand
• Even seemingly minor misstatements can lead to significant confusion
• It’s never easy
• Education, training
• Qualifications?
Questions?
• [email protected]

*not my
puppies