Withdrawal of Care: Who Decides?
A Comparison of US and UK Cases
By Piotr Tekiela, Lauren Ottenhoff and Michael Schneck, Loyola University Chicago, Stritch School of Medicine
With the steady rise of high acuity complex cases, physicians
are increasingly finding themselves navigating the legal system
about decisional capacity. Decision-making authority can vary
in the United States by individual state (as discussed in the
one of the recent ethics papers in Currents) but can also vary
internationally, depending on resources, societal norms and
community relationships. The areas of consent, patient autonomy,
and the right to expect or refuse medical interventions are having
increasing visibility in the media, and the differences in approach
between the United States and the United Kingdom, which share
a common legal system but have different healthcare systems
and different approaches to individual health decision-making
processes, is highlighted in this review.
In the 1970s-1990s, there were several cases in the U.S. that
were taken to court where families were fighting to withdraw
care. The Quinlan case (1976), the Cruzan case (1990) and
the Schiavo case (1990) all involved young adult females who
unfortunately suffered brain damage (from different etiologies),
which eventually left them in a persistent vegetative state. After
a year, the father of Karen Ann Quinlan requested that care be
withdrawn, which was later denied and taken to the New Jersey
Supreme Court. The court ruled in favor of the father stating that
the right to privacy includes a right to refuse medical care, which
also includes incompetent patients and can be exercised on their
behalf by their legal guardian.
In contrast, four years later, the family of Nancy Cruzan requested
to stop artificial feedings. This request was denied, and the
case was taken all the way to the U.S. Supreme Court. The final
decision ruled in favor of continuing the artificial feedings by
calling on the Fifth Amendment’s guarantee that no person shall
“be deprived of life, liberty, or property, without due process of
law” and despite the patient being mentally incapacitated they are
still granted these same rights” The U.S. Supreme Court, however,
allowed states to impose restrictions on what is determined to be
acceptable “evidence of the patient’s prior wishes.” Friends and
family of Nancy Cruzan later provided evidence to the court that
confirmed the she had previously expressed she would not want
artificial feedings continued, which led to the termination of this
intervention. This case in particular established a constitutional
protected liberty interest in refusing medical treatment but did not
imply a correlative right to demand treatment.
In the third prominent case, after eight years without any
neurological improvement, Terri Schiavo’s husband, as legal
guardian, requested that the feeding tube be removed. Her
parents at the time objected to this and took this case to court.
In 2000, a Florida circuit judge determined there was clear and
convincing evidence that Schiavo would have not wanted to be
kept alive in this state and ruled to honor her wishes. Her parents
made multiple attempts to reverse this ruling, and the case was
eventually taken to the Florida Supreme Court in 2004, which
upheld the lower court’s decision. The U.S. Supreme Court also
agreed with the prior rulings and refused to hear the case. This
case specifically highlights that incapacitated patient can refuse
medical interventions if the correct documents are in place prior
to the event, including an advance directive or living will, a
physician order for life sustaining treatment or by direction of
their surrogate. Some states do impose limitations on a surrogate’s
authority to withhold or withdraw care if they were not appointed
by the patient prior to the event. These cases were instrumental
in establishing legal norms for terminating end-of-life treatment
in the United States and emphasize the right to refuse medical
interventions.
In each of these cases, however, there was evidence that the
patient, supported by a family member, would have wanted care
to be withdrawn. The much publicized Jahi McMath case is an
example of a U.S. family’s ability to circumvent medical expertise,
based on patient or family wishes, even in the extreme case of a
declaration of death. This case involved a 14-year-old girl who
was declared braindead in 2013, following surgical complications
in a California hospital. The family in this case refused to accept
the declaration and sued to overturn the declaration of death.
Ultimately, the family was allowed to remove the patient, even
with a legal declaration of death, and find a hospital on the East
Coast that was willing to maintain life support despite the legal
declaration of death in California.
As in the U.S., the U.K. acknowledges the high priority of patient
autonomy. Those with decision-making capacity are free to do
so as long as the principle of informed consent is upheld. The
most recent legal iteration of this principle in the U.K. was the
case of Montgomery Law vs. Lanarkshire Health board in 2015.
This emphasized the paramount importance of informed consent
requiring that a patient be informed of important risks and
benefits. This case overturned a previous law, Sidaway 1985, which
stated that whatever risks, benefits and complications deemed
reasonable by the clinician would be presented. The question
of what a clinician deemed relevant, if ever challenged in court,
would be upheld by the Bolam test. The Bolam test (1957) is used
to assess negligence and requires that the clinician being sued
shows that an expert opinion does not require consensus and an
expert would have done the same thing in a similar situation.
Once the patient has been properly informed, however, the patient
is free to make his or her own decision regardless of what medical
experts believe since it is presumed that the patient knows what
is in their best interest. Autonomous decisions make headlines
less frequently (except perhaps in the case of “assisted suicide”).
Rather, it is when decisions are made for others (i.e. children or
those who lack decisional capacity) that this controversy arises.
Making a decision for a family member who does not have
ETHICS CORNER
Piotr Tekiela Lauren Ottenhoff Michael Schneck
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