
decision-making ability or with children is where the “best interest
principle” comes into play. The Charlie Gard and Alfie Evans cases
in the U.K. were disagreement about the child’s best interest by the
parents and U.K. healthcare staff occurred and required a court to
decide on behalf of the children.
Alfie Evans was a 2-year-old boy who suffered from an
undiagnosed degenerative neurological condition. He was
admitted to Alder Hey Children’s Hospital in Liverpool in
December 2016. Alfie remained in a semi-vegetative state for more
than a year, during which time doctors and Alfie’s parents clashed
over what was in Alfie’s best interest. The decision to withdraw life
support occurred after it was determined by the medical personnel
that Alfie had catastrophic degradation of his brain tissue and
that further treatment was futile, unkind and inhumane. Further
complicating this matter was that a hospital in Italy, with links
to the Vatican, offered to continue treatment, but the request for
transfer by the parents was denied on the basis of the argument
that this was not in the best interests of the terminally ill child
despite the parents disagreement about the determination of “best
interest.” After a lengthy legal battle, life support was turned off
and Alfie Evans died on April 28, 2018.
Charlie Gard was born on Aug. 4, 2016, full term and without any
obvious complications. Within a few weeks of his life, his parents
were concerned about his development, and he was admitted
to Great Ormond Street Hospital (GOSH). At that time, he was
diagnosed with MDDS (infantile onset encephalomyopathic
mitochondrial DNA depletion syndrome). Currently, there is no
defined/approved treatments for this disease. GOSH did research
and considered treatment referrals for a nucleoside treatment
that is being investigated for early intervention of this condition.
Unfortunately, after tests showed Charlie’s brain likely had reached
the stage of severe epileptic encephalopathy, doctors determined
that this treatment was not in Charlie’s “best interest.” Charlie’s
parents were in agreement if that there was no treatment that
could improve his quality of life then life was not worth sustaining
in its deteriorating state. However, the parents felt that nucleoside
treatment could indeed help and so went to court as no agreement
could be reached between the hospital and Charlie’s parents
through mediation. The U.K. court then declared that the therapy
was not in Charlie’s best interest; this decision was challenged
and upheld at three levels of U.K. courts of appeal. Subsequently,
in July 2017, a United States neurologist, who had a commercial
interest in this treatment, offered to provide nucleoside treatment,
so the case was reopened in the U.K. courts. The parents raised
$1.3 million through web-based fundraisers in order for Charlie
to get this treatment, but the U.K. court’s decision remained
unchanged. Charlie was then moved to hospice care and later died
on July 28, 2017, at 11 months of age.
Under U.K. law, when no agreement can be reached between
families and clinicians, the decision is made by the courts, in
accordance with the 1989 Children Act, that notes the state has
the right to determine a child’s best interest and therefore should
intervene if a child is at risk of harm. There is a similar “best
interest of the child” doctrine in the United States that has been
applied in similar pediatric cases. In the United States, however,
the best interest is usually applied only when families refuse
treatments (i.e., blood transfusions to minors in families whose
religious belief opposes such transfusions). The U.K. courts, in
both the Gard and Evans cases, made decisions about withholding
provision of additional care, as being in the child’s “best interest”
contrary to the parents’ wishes, leading to the subsequent social
media outcry.
ETHICS CORNER
The recurring principle that drives decision-making processes for
all parties, whether this be parents, clinicians or courts, is the idea
of “best interest.” There is typically no argument among decision
makers that they truly believe have the child’s best interest in
mind. The disagreement, however, is what that truly means in a
specific context. For the courts, typically this means that which
is in the best interest of the child through the perspective of the
child. In the U.S., typically this determination of best interest
of the child is defined by the parents (assuming their parental
rights have not been terminated). In the U.S., where individual
liberty is paramount, many will argue that the parents are the
best advocates for their children even if the parents might be
“compromised” by outside influences (advocacy groups, social
media, etc.) or where the parents’ decisions seem to be in
contravention to medical facts. The Jahi McMath case involving
a teenage girl who was declared braindead in California but
where the parent was allowed to transfer the child to a New Jersey
Hospital is the extreme example of this approach.
In contrast, professional societies like The Royal College of
Pediatrics wrote guidelines (2014) regarding pediatric withdrawal
of care. These guidelines describe three circumstances where
treatment should be withdrawn: 1) when treatment is unable or
unlikely to prolong life; 2) when treatment may prolong life but
cause unacceptable pain and suffering; and 3) when children
with a life-limiting illness who repeatedly state they do not want
treatment and have the approval of both doctors and parents. In
the U.K. formulation, the government has the right and obligation
to step in and stop parents from what medical professional then
determine as abusive behavior. In 1989, the U.K. government
motivated by the Cleveland Scandal of 1987, and its resulting
public outcry wrote laws that would specifically allow the
government to intervene and stop these abuses.
Today we are hearing a social media outcry to remove the U.K.
courts from this decision-making process. A fundamental question
arises, in comparing the U.K. and U.S., which share a similar
jurisprudence system but different cultures: What processes are in
place to balance out autonomy and the best interest principle, and
if a balance is not achievable, who is the correct arbiter? As noted,
U.S. culture favors autonomy and individual liberty and so vests
that interest in the family, at least in regards to withdrawal of care.
In the U.K., where a more statist approach to healthcare exists,
the “best interest” may be determined by other actors, including
medical professionals and the courts. How we insure that the
patient’s autonomy and best interest are preserved, particular
for those who lack decision-making capacity, is an increasing
challenge to practitioners in the neurocritical care setting and
societal preferences and cultural norms on both sides of the
Atlantic will continue to influence this evolving debate.
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