https://pediatrics.aappublications.org/content/145/4/e20192340
Abstract
The American Academy of Neurology believes that doctors have
the right to do tests to evaluate whether a patient is brain dead even if the
family does not consent. They argue that physicians have “both the moral
authority and professional responsibility” to do such evaluations, just as they
have the authority and responsibility to declare someone dead by circulatory
criteria. Not everyone agrees. Truog and Tasker argue that apnea testing to
confirm brain death has risks and that, for some families, those risks may
outweigh the benefits. So, what should doctors do when caring for a patient
whom they believe to be brain dead but whose parents refuse to allow testing to
confirm that the patient meets neurologic criteria for death? In this article,
we analyze the issues that arise when parents refuse such testing.
From the article:
The American Academy of Neurology does not believe that
obtaining informed consent before performing a brain death evaluation is
necessary. Instead, they argue that physicians have “both the moral authority
and professional responsibility” to do such evaluations, just as they have the
authority and responsibility to declare death by circulatory criteria. Not
everyone agrees, nor do experts agree on
how exactly such evaluations should be performed. So, what should doctors do when caring for a
patient whom they believe has died but whose parents refuse to allow testing to
confirm death by neurologic criteria (DNC)? In this article, experts from
intensive care, bioethics, and palliative care analyze the issues that arise when
parents refuse formal testing to declare death by neurologic criteria (“brain
death”).
Most neurologists (78%) and pediatric neurologists and
intensivists (72%) do not feel consent is necessary before testing for DNC. But the law varies from state to state. One Virginia court ruled that parental
consent was not necessary to perform testing, whereas courts in Kansas and
Montana ruled in favor of a consent requirement. In Montana, the court found that testing for
DNC is a “medical procedure with significant repercussions” that patients (or
their surrogates) have a fundamental right to consent to or refuse, also noting
that the state legislature’s silence regarding the consent requirement could
not be interpreted as permission to proceed without consent. Recently, Nevada became the first state to
revise its Determination of Death Act to expressly indicate that determination
of death is “a clinical decision that does not require…consent.” In sum, states are split regarding the
legality of physician testing for DNC without consent.
The requirement to obtain informed consent before performing
medical interventions stems from the ethical principle of respect for persons.
In limited situations, consent may be assumed, including for emergent care or
specific, routine physical examinations or tests (such as blood counts or
radiographic imaging), when a patient provides general consent for care within
an inpatient visit. In these situations, proceeding without express consent is
supported by duties of beneficence because it is assumed to be in the patient’s
interest to receive care in an emergency or undergo diagnostic testing to aid
in treatment or prognostication. Clinical testing for DNC, however, often takes
place in a controlled environment, and reasonable people may disagree about
whether determining a patient has died is in that person’s interest. As Truog
and Tasker have argued, if we cannot assume that a patient would want a
procedure, we are obligated to seek informed consent.
If parents refuse testing for DNC, their child is presumed
to be alive, and the ethical justification for overruling their refusal is
unclear. The formal clinical test provides no direct medical benefit to the
child, only the possibility of a legal determination of death, resulting in
permissible unilateral withdrawal of mechanical support. Therefore,
individualistic standards, such as the best interest standard or harm
principle, do not justify overruling a refusal because it is neither clear that
testing to declare DNC is in a child’s best interest nor that a profoundly
impaired child whose death has not been confirmed is harmed by continued
existence compared with the alternative.
There are a number of bases for claims that parental consent
is not necessary. One is that continued provision of mechanical support
reflects futile or medically inappropriate care. We believe that mechanical
support is not futile if the patient remains legally alive and the family’s
goal of treatment is continued life. Another justification for testing without
consent is a professional responsibility to provide appropriate care based on
an accurate diagnosis. However, this responsibility does not permit physicians
to overrule parental refusals of diagnostic tests unless the refusal results in
clear, preventable, and imminent harm to the child. Finally, others may argue
that permitting refusal of formal DNC testing may overwhelm limited intensive
care resources with individuals who likely meet the definition of DNC, potentially
limiting access to care for others. Although
these are legitimate concerns, they are not supported by reported experience in
states or countries with limited acceptance of brain death. Even if parental refusal of formal DNC testing
did result in waste of limited resources, policies about who should be assessed
and how their surrogates should be approached, including whether consent is
required, should be developed at the state or national level rather than
applied in an ad hoc manner at the bedside.
This analysis suggests that there is no ethical
justification for physicians to unilaterally perform testing for DNC against
parental wishes. In some states, as noted, doctors have the legal right to
perform such testing. However, having a legal right does not mean that it is
ethical. Physicians should respect parents’ refusals and attempt to understand
the reasoning for refusal. The pursuant discussions may reveal that the family
has an underlying concern about the diagnosis of brain death itself, some
degree of mistrust in the process, or perhaps a need for more time to come to
terms with their child’s prognosis. In any case, the process of informed
consent may serve a broader function beyond merely obtaining permission to
proceed with formal testing for DNC. E.C.’s case and others like it underscore
the importance of considering consent as a mutual, dialectic process that
builds on and contributes to the patient-family-doctor relationship. Although
these cases are tragic and challenging for all involved, optimal communication,
empathy, and time may lead to resolution…
For additional support during a time-limited trial before
testing, eliciting the expertise of consulting services, including the
bioethics consult and palliative care teams, may be beneficial. Chaplains may
help align with a family’s faith and use religious guidance to support
families. Social workers may provide counseling, help facilitate visitation
from other family members and friends, and ensure that the family has their
basic needs met to optimize their decision-making capacity. In addition,
eliciting support from those whom the family trusts, including community or
spiritual leaders external to the institution, may be important. Often, with
time and the inclusion of consultants, trust may grow, and the family may come
to feel honored and supported in these tragic circumstances.
Even so, some families may continue to refuse testing. To
address these situations, hospitals should allow for accommodation of families
when necessary. This approach may require
additional interventions, including tracheostomy and gastrostomy tube
placement, transfer to a different location, and additional support for the
health care team. Those are worth the effort to demonstrate sincere respect,
maintain trust, and provide the compassionate care that all children and
families deserve…
A palliative approach includes multiple assessments that
could guide how best to approach the process of brain death examination for a
particular family. Exploring the family’s understanding of their child’s
disease and prognosis may uncover knowledge gaps or concerns that should be
explored further. It is critical to understand how a family’s faith, culture,
and personal belief system impact their comprehension of “brain death” and the
child’s needs. Understanding the values of a particular family as they relate
to medical care in general, and brain death specifically, creates the
opportunity for providers to develop a thoughtful medical approach. It is also
essential to explore a family’s previous experience with serious illness to
allow for a deeper understanding and insight into their emotional process and
how they have navigated past traumas. The foundation created by these
assessments can inform a thoughtful approach for communication and decision-making
around testing for DNC.
Collaboration and relationship building are critical.
Although medical teams may be limited by the constraints of their institutional
work structure, in cases such as this, continuity matters. A consistent care
team allows one to build rapport and a trusting relationship. When this is not
possible, we must provide a meaningful summary to colleagues of the emotional
work and complex communication that has occurred as well as use the
interdisciplinary approach to bridge the issue of continuity as much as
possible for families.
Finally, providers should consider the importance of time.
Critically ill children depend on the rapid assessments, decisions, and
interventions of the PICU team for survival. Rapid decision-making is the norm.
This case highlights the importance of recognizing when it is time to slow
down. Although examination for DNC may not be viewed as a decision from the
physician perspective, many families recognize the timing of examination as a
decision point. Allowing time for parents to process and ready themselves is
sensible and may be necessary to absorb the diagnosis. A 2013 report from The
Hastings Center asserts that requests for a delay in the declaration of death
or in the discontinuation of interventions are reasonable and should be
accommodated if possible as a way to help loved ones with grief and
bereavement.
Although no amount of time takes away a family’s pain and
grief, using an interdisciplinary approach centered on the unique needs of a
family may strengthen the partnership between parents and medical teams to
allow for space to move through the challenges of brain death examination.
Time, continuity of relationships, and an interdisciplinary
approach can improve trust and collaboration such that both parties are able to
hear and appreciate each other’s perspectives. With this approach, the
relationship with the family is reframed from one that is focused on moving
through examination and declaration of death to one that accounts for the needs
of the individual family based on their lived experience…
The concept of brain death has undergone a surprising
trajectory in the public mind. When first proposed, it was widely accepted. By
1990, every state in the United States recognized brain death as an appropriate
legal criterion for declaring a person dead. But the concept seems to be
generating more controversy over time and moving from the pages of medical
journals into the mainstream press. In 2018, a feature article in The New
Yorker magazine raised questions about whether people who meet legal standards
for brain death are in fact dead.
The current controversies reflect both shifts in values and
technological advances in intensive care. When brain death was first
conceptualized, patients who met neurologic criteria would quickly progress to
circulatory death. That is no longer true. In some cases, their hearts and
other organs continue to function normally. As Shewmon points out, patients
who meet criteria for brain death can assimilate nutrients; fight infection and
foreign bodies; maintain homeostasis; eliminate, detoxify, and recycle cell
waste throughout the body; maintain body temperature; grow proportionately;
heal wounds; exhibit cardiovascular and hormonal stress responses to
unanesthetized surgical incision; gestate fetuses; and undergo puberty. Given
the contentiousness of the concept of brain death, it seems ethically
appropriate to honor parents’ refusals of formal testing. To force such testing
will ultimately erode people’s trust in doctors, bioethicists, policy makers,
and the legal system. As noted, most parents eventually accept testing and a
diagnosis of brain death. Accommodating the rare exceptions is a price worth
paying to maintain public trust.
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