By Sara Buscher
Past Chairperson, EPC-USA
A draft of the revised Uniform
Determination of Death Act (RUDDA) is headed to the Uniform Law Commission’s
July 26 annual meeting for a First Reading. Possible actions could be to put
this project on hold or to give the drafting committee further direction. It
won’t be offered to the states this year.
This project
began in response to those in the medical community who typically declare
people brain dead. They asked the Uniform Law Commission to revise the UDDA to:
- Eliminate lawsuits by family members, especially by parents of children declared brain dead.
- Make it easier to ration medical care by declaring patients brain dead, especially those in Intensive Care Unit beds.
- Make somewhat more organs available for transplantation.
The UDDA provides a shield from medical malpractice
liability by granting doctors the right to declare living patients to be brain
dead leading to the cessation of life-sustaining treatment. Brain death can be
used to limit liability for medical malpractice by cutting off the costs of
care for serious brain injuries.
An informal meeting between the Drafting
Committee and 20 or so Commissioners was held on June 9. Because the Committee
is stalemated, it has not voted. Instead language for the two camps is being
presented and Commissioners are being asked to pick one. Usually draft uniform
laws are recommended to the Commissioners after a drafting committee reaches a
consensus. The Committee’s inability to arrive at a consensus reflects the lack
of scientific evidence and disagreements within the medical community.
The Drafting Committee’s two options are:
- Option 1: Keep the existing UDDA which has not changed since 1980. It says: “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 in accordance with accepted medical standards.”
OR
- Option 2: Revise (loosen) UDDA criteria and
provide suggested, but not required, opt-out option language for those who
don’t want the loosened criteria applied to them. Draft language follows later.
Of the available options, EPC and EPC USA
support Option 1 provided it does not violate the dead donor rule with a brain
death opt-out for patients and providers that could be exercised at any time
just like informed consent can be modified or changed at any time. In fact, we
believe that people currently have the right to decide how their deaths should
be determined and have provided language to do so in our Life Protecting Health
Care Power of Attorney, available at https://epc-usa.org/resources/
If you want to provide input to the Uniform
Law Commission you can email a letter to Drafting Committee Chair Judge Samuel
Thumma at sthumma@appeals.az.gov
with a copy to Lucy Grelle at lgrelle@uniformlaws.com,
asking that it be posted online. It should be sent no later than July 12.
Drafting Committee’s Language
The language
for Option 2 follows.
Determination
of Death
(a)
An individual is dead if the individual has sustained:
(1)
permanent cessation of circulatory and respiratory functions; or
(2)
permanent
(A)
coma,
(B)
cessation of spontaneous respiratory functions, and
(C)
loss of brainstem reflexes.
(b)
A determination of death under subsection (2) must be made in accordance with
accepted medical standards.
Accommodation
(a)
An individual may object to a determination of death under Section [brain death].
(b)
An objection under subsection (a) must be expressed in the individual’s medical
records.
(c) A
health-care institution shall adopt a policy in a record that sets forth the reasonable efforts it will make to accommodate an objection under subsection (a). The policy must:
(1)
require the institution to comply with the individual’s choice that a determination of death not be made under Section [brain death]; and
(2)
provide that an objection must be made before beginning the clinical evaluation
for the determination of death under Section [brain death]
The
UDDA and Option 2 allow people to be legally declared dead who are alive.
A open letter to the Drafting Committee from
by 107 experts says of the current UDDA: “Now
it is widely accepted that brain dead bodies are biologically living
organisms.”[1]
Harvard ethicist Robert Truog M.D. says the
central justification equating brain death with biological death is now known
to be false.” It is well accepted that “brain death” was legally adopted to
allow the supply of organs for transplantation. “Donation
after circulatory death determination is not preferred, as this manner of death
tends to render organs unusable…”
One of the Commissioners argued for a law
that would treat people who are biologically alive as legally alive instead of
using a quality of life (rationing on the basis of disability) philosophy. His
concern was ignored, but not disputed.
“Brain
death” is a label reflecting value judgments
Professor Thaddeus Pope says “…brain death is recognized as a value
judgment instead of as a scientific truth.”[2]
The lack of scientific evidence shows up in several ways, particularly wide
variation on standards in standards, misdiagnosis and racial disparities.
Lack
of Scientific Evidence
The American Academy of Neurology (AAN) Guideline
for determining brain death is the Drafting Committee’s favored “accepted
medical standard”. (At one time they referred to it in a definition of the
medical standard.) The AAN Guideline
says the evidence supporting brain death determinations is severely limited. So, the AAN
relies on the UDDA legal standard, not scientific evidence, for its brain death
medical standards, saying in its Guideline: “because of the deficiencies in
the evidence base, clinicians must exercise considerable judgment when applying
the criteria in specific circumstances.” In other words, the Guideline
allows its criteria to be overridden by clinical judgment.
Systemic
Racism
It is fairly well known that organ donation and
distribution discriminate on the basis of race. Blacks have the highest per capita rate of
being declared brain dead of any race with whites being the lowest. Despite that,
whites are well over 1.5 times as likely to get a transplanted organ as Blacks.
The number of organ transplants
performed on blacks in 2020 was 27.7 percent of the number of blacks currently
waiting for a transplant. The number of transplants performed on whites was
47.6 percent of the number currently waiting.
Wide
Variation in Medical Standards leads to Misdiagnosis
Brain death diagnostic procedures vary
so widely that an AMA Journal of Ethics article says such inconsistency
should not be tolerated; it will lead to more misdiagnosis and erode public
trust. The author says the UDDA by
designating “accepted medical standards” allows them to be set nationally,
regionally and locally. “If we cannot promise robust
and 100% accurate diagnosis of brain death, we cannot in good faith counsel
families about organ donation, as to do so would violate the dead donor rule.”
Under the current UDDA, from
50% to 84% of brain dead people are misdiagnosed; how many could recover is
unknown. The tests that would identify these people are not run. Once these
people are declared brain dead, insurance coverage stops, life-sustaining
treatment is withdrawn[3]
and they die. Both Options 1 and 2 ignore this.
Issues Raised by the
Draft Language
The language itself raises some issues and
goes further than you would think for circulatory and respiratory death as well
as brain death. Remember Damar Hamlin, the football player who collapsed during
a game when his heart stopped? His heart was restarted several times on the
field, but he was unconscious (i.e., in a coma) and ended up in the hospital on
a ventilator. Under the Drafting Committee’s proposal it’s possible he could
have been declared brain dead as the following discussion illustrates. Yet with
treatment, he has recovered and been cleared to play football.
Brain
death is not limited people who are going to die anyway.
Neither Option 1 nor 2 limits brain death
to those who are going to die anyway. In fact, people who could live for many
years and people who could fully recover can be declared brain dead.
The
change to “permanent” is not limited to treatments rejected by the patient.
The Committee’s memo says: “irreversible”
as used in the UDDA means cessation cannot be reversed; “permanent” means
cessation could be reversed but it will not be. Remember Damar? What if the
doctors decided to stop restarting his heart? In the meeting it was suggested
this would come into play by not performing CPR when the patient has a Do Not
Resuscitate (DNR) order. Neither Option 1 nor 2’s language limit withheld
treatments to only those the patient has rejected.
The
change to Coma+ from Whole Brain criteria reaches too far.
The Committee is getting input only from
those medical organizations that want the UDDA loosened. Option 2’s language
ignores parts of the brain that typically continue to function in people now
labeled brain dead. There are other practice areas of medicine, such as the
Neurocritical Care Society with its Curing
Coma Campaign, that believe more people can have improved outcomes and
quality of life if the focus is on treatment for patients dealing with coma.
The comatose should not be written off.
An analysis in the AMA Journal of
Ethics says the existing brain death examination “evaluates
function but cannot distinguish between a “stunned,” quiescent brain and an
irreversibly damaged brain;… ‘super locked-in patients’ …could appear
brain dead, despite preserved consciousness or afferent olfactory and visual pathways,
analogous to vegetative patients who demonstrate subclinical awareness when
carefully interrogated.” We know that coma can
evolve to persistent vegetative state or partial consciousness and that about
50% of those in a persistent vegetative state following a traumatic injury,
eventually recover consciousness.
This process takes a few months to a year, but brain death is usually
determined much more quickly. A quick labeling of brain death does not allow
this healing process to take place.
[1] Shewmon DA et al., “Statement
in Support of Revising the Uniform Determination of Death Act and in Opposition
to a Proposed Revision,” The Journal of Medicine and Philosophy: A Forum for
Bioethics and Philosophy of Medicine (2021):5
of 35.
[2] Thaddeus Mason Pope, "Brain Death Forsaken: Growing Conflict
and New Legal Challenges," Journal of Legal Medicine 37, no. 3-4
(July-December 2017): 265-324.
[3] Life sustaining treatment, referred to as organ sustaining
treatment continues for brain dead organ donors until the organs are harvested.
