Ethical Issues in Pediatrics
is a wonderful addition to the body of bioethics literature.  It is a well
organized presentation of some of the ethical issues that can arise in the
context of pediatric medicine.  The intended audience, claim the editors,
includes primary-care providers, physicians, members of ethics committees,
medical students and residents, professional philosophers, and lay people. 
This is reasonable, though some members of that last group might be turned off
by the rather formal, "academic" style.  The format of the book is
one of case/commentary.  Clinical accounts written by physicians are paired
with commentaries written by bioethicists.  The editors add their own helpful analyses
of the ethical issues at play in each case.

The introduction offers a brief
history and description of bioethics, as well as an explanation of clinical
ethics ("a patient-centered application of biomedical ethics" (p.3)). 
It also provides the means for distinguishing between general clinical ethics and
pediatric clinical ethics.  I will mention just a few.  In general cases, a
relationship exists between patient and physician; in pediatric cases, that
relationship includes parents or guardians.  In general cases, patients
participate in the decision process regarding treatments; for the most part,
that is not so in pediatric cases.  And in general cases, a patient’s autonomy
is to be recognized and highly respected; in pediatric cases, physicians may
have more regard for their patients’ welfare than for their autonomy.

The book is divided into four
parts, each containing three chapters (each chapter centers on one case).  For
brevity’s sake, I will highlight one aspect of each part.  But note that by
doing so I am not suggesting that the parts I ignore are lacking in interest or
strength.

The first part, Therapeutic
Misalliances, involves situations in which the ideal relationship between
patient, physician, and guardian is not realized.  The ideal relationship,
called a therapeutic alliance, is one in which all parties (or, as in many
pediatric cases, the physicians and guardians) agree on the goals of treatment
and the means by which to achieve them.  The first case in this part details
the struggle between a mother and the physicians charged with caring for her
infant daughter.  A misalliance was created when the mother insisted that a
spiritual advisor’s prescription be followed (which called for the infant to
ingest an herbal brew and also involved applications of the same herbal brew on
the infant’s chest in coordination with the full moon).  In the end, the mother
and the physicians reached a compromise.  The infant would not ingest the tea
but would have it applied to her chest.  The doctors believed that the tea
would likely do no harm and might provide some therapy.

Richard B. Miller provides
commentary for this case, and I quite like his analysis.  Miller frames his
comments with a context of cultural sensitivity.  The idea is that in this age
of respect for diversity, it is good for a healthcare system to act in
accordance with a patient’s cultural or religious views (although such action
should be constrained by a patient’s best health-related interests).  This
brings out an important aspect of pediatric clinical ethics–namely, the fact
that it is an intervention into family relationships.  As such, the interests
of a patient’s family members must sometimes be met.

But Miller also offers an
explanation of what it means for physicians to provide adequate care, and on
this basis he objects to the way the doctors acted in this case.  Part of what
it is to provide adequate care is for physicians to inform parents of possible
connections between their habits and their child’s health.  Miller calls this
the "transformational approach".  What the doctors in this case
should have done is to look more carefully at the new age remedies used by the
mother to see if they pose a present or future health threat to her child.  This
kind of education is part of the treatment that doctors ought to provide.

The second part, Medical
Futility, deals with cases involving the maintenance or withdrawal of
life-support.  The term ‘futile’ can be understood in this context as meaning ‘medically
inadvisable’.  What is to be done when doctors advise against the continuation
of life-sustaining treatment and parents/guardians request it?  The second case
in this part involves a child who required long-term mechanical ventilation. 
Doctors in this case–guided by professional standards, experience, and concerns
about resource utilization–advised that such treatment not be pursued.  The
child’s mother requested that everything possible be done to maintain her child’s
life, and her wishes were honored.  The doctors noted that the reasons they had
for discontinuing treatment were not forceful enough to overcome the mother’s
desires.

Anita Silvers takes exception to
the decision process at work in this case.  She makes the important point that
clinical ethics is often guided by casuistry (case-based reasoning) rather than
ethics (principle-based reasoning).  Her assessment of the case shows that the
doctors arrived at a conclusion dissimilar to their inclinations after failing
to properly categorize the case at hand.  They were thus unable to apply an ethical
principle.  What they ought to have done, says Silvers, is to attend to the
particulars of the case and not to its categorization into one or another
ethical paradigm.  This is valuable advice, especially in a bioethics framework
and particularly in the context of pediatrics.

The third part, Life By Any
Means, focuses on three cases in which complex, invasive, and high-risk
interventions are necessary for prolonging life.  One involves heart surgery
while the other two involve organ transplantation.  The latter cases raise
questions about, among other things, the allocation of organs.  The second case
in this part is fascinating because it has to do with the prenatal
diagnosis of a heart condition and the inclusion of an unborn person on a
transplant candidate list.

Joel Frader does a nice job of
keeping distinct the issues of appropriate treatment and appropriate allocation
of resources.  He is careful not to draw any conclusions regarding one issue on
the basis of the other.  In the case at hand, there is a question about which
course of treatment was the right one to prescribe.  Frader’s contention is
that the scarcity of donor hearts is not enough to recommend alternative
treatment in this case, primarily because the data does not yet exist to
demonstrate the comparative effectiveness of the alternative (in this case,
surgery).  Frader includes a brief discussion of the morality and policies
regarding the addition of a fetus to a transplant candidate list.  This is
itself a fascinating ethical issue, deserving of its own analysis (in another
forum).

The fourth part, Institutional
Impediments to Ethical Action, focuses on the problems that can be caused
or exacerbated by health-care institutions.  The organization and arrangement
of these institutions is getting more and more attention because of the effect
they can have on the quality of the medical care these institutions provide.  The
second case in this part was written by Joy Penticuff, a nurse educator, and
thus provides the reader with a valuable and unique perspective.  Her piece
clarifies what she calls "ethics within arm’s length", a notion that
points to the close proximity in which nurses stand to their patients in order
to highlight the special relationship that exists between pediatric nurses and
patients.  The case involves the decision–made by the parents of a
prematurely-born infant and a hospital ethics committee–to limit the number of
attempts nurses would make to restart a failed IV (an IV that provided the
infant with her primary sources of nourishment and hydration).  Penticuff
laments the lack of nurse-input in this decision, pointing out that nurses
rarely share their valuable opinions with hospital ethics boards.

In her commentary, Mary V. Rorty
offers a nice analysis of the difference between withdrawing treatment and
limiting the number of attempts to administer treatment.  By her reasoning,
there is no moral difference (at least in the case at hand).  The decision in
this case to limit the number of attempts rather than to simply withdraw
treatment probably reflects a psychological reluctance, prevalent in the
medical community, to withhold hydration and nutrition from young patients.  No
doubt, intuitions and emotions play a part in making decisions such as the one
made in this case.  But the main point of Rorty’s comments echoes a point made
by Penticuff: this case is one in which the nurses ought to have been a part of
the decision-making process.  By leaving them out, the parents, physicians, and
ethics committee failed to respect the nurses as active, caring moral agents. 
This insight provides a valuable prescription to all health-care institutions.

Without exception, the cases in
this book are well presented and the commentaries are thoughtful and
interesting.  The editors of Ethical Issues in Pediatrics are to be
congratulated for assembling this collection of works which highlight so well some
of the key issues in pediatric clinical ethics.

© 2007 Andrew Brei

Andrew Brei is working on a
dissertation entitled "Our Right to Health and Our Duty to Nature,"
and expects to receive his Ph.D. in philosophy in 2007.  In the meantime, he
teaches ethics at Purdue University.

Categories: Ethics, ChildhoodDisorders