Ethical Issues in Pediatric Neurosurgery Practice: The Neurosurgical Point of View
Opinion
Although there is no one definition of the term ethics, in general,
it encompasses the various approaches to understanding and examining
moral behavior. The study of ethics can be broadly classified into two
areas: Normative and non-normative ethics. Normative ethics seems to
answer the question, “What ought I do' for a given moral dilemma,
whereas non-normative ethics simply describes how people reason and act
in moral situations, without commenting on the inherent 'rightness' of
their actions. The application of these principles to health care is a
relatively young field. It seeks to define, analyze, and guide
decision-making in medicine, as it relates to the moral issues that
confront both health care providers and patients. The last four decades
have seen tremendous growth in the field of biomedical ethics- there is
little doubt that the proliferation of ethics teaching has resulted in a
heightened awareness of ethical issues and dilemmas in medicine.
There is perhaps no other specialty in medicine that is confronted
with ethical quandaries on a daily basis more than pediatric
neurological surgery. From severe congenital nervous system
malformations, to premature new borns, to quality- of-life and
end-of-life issues, pediatric neurosurgeons make medical decisions with
profound ethical, spiritual, and religious consequences on an ongoing
basis. The root of bioethics date back to the fifth century BC when
Hippocrates codified his musings on how a physician should act into the
Oath of Hippocrates. The modern resurgence of bioethics occurred in the
late 1940s. The Doctors' Trials in Nuremberg from 1946 to 1947 resulted
in the formulation of the Nuremberg Code, outlining a list of
requirements for the ethical conduct of human-subjects research. The
Nuremberg Code has been largely replaced by the World Medical
Federation’s Declaration of Helsinki, last revised in 2002. In both the
teaching of bioethics and the application of bioethics to clinical
medicine, many ethicists use a variety of ethical frameworks-specific
lenses through which a particular ethical issue can be seen- to better
outline the crux of the ethical matter at hand.
Principilism
Principilism refers to the 'four pillars' of modern bioethics: autonomy, nonmaleficence, beneficence and justice.
Respect for Autonomy
The concept of autonomy has superseded the tradition of beneficent
paternalism, where patients essentially trusted that their physicians
would make appropriate decisions, medically and ethically, on their
behalf. Autonomy is the core of the concept of informed consent, in that
a person cannot make a truly autonomous decision without fully
understanding the risks, benefits and alternatives to the proposed
therapy. Pediatric neurosurgeons deal with the difficulties associated
with the concept of autonomy in that many of our patients, by virtue of
their age, disease, developmental status or statutory restrictions do
not have the ability to make decisions on their own, and as such, we
must rely on substitute decision makers, in most cases their parents. A
common criticism of Western bioethics is the perceived overemphasis on
the principle of autonomy.
Nonmaleficence
Primum non nocere or 'first do not harm’, based on Hippocratic
principles, effectively summarizes the principle of nonmaleficence.
Virtually any intervention in medicine in general, and perhaps more so
in neurosurgery in particular, carries with it the potential to do harm;
therefore, it may be better to express the principle of nonmaleficence
in terms of undue risk of harm or intent to harm. The principle of
nonmaleficence and the importance of intent are often cited when
contrasting withholding versus withdrawing treatment and killing versus
letting die.
Beneficence
Beneficence refers to the act of doing or producing good or
performing acts of kindness and charity. In the context of medical
intervention, the intent or hoped-for outcome in an intervention must
have a reasonable chance of producing some benefit to the patient, or
conversely, in preventing harm from coming to him from the disease.
Justice
Justice is described as what is fair or deserved, or what one is
entitled to. Distributive justice 'refers to fair, equitable, and
appropriate distribution determined by justified norms that structure
the terms of social cooperation'. The allocation and rationing of
health-care resources at all levels and priority setting in health-care
institutions are issues in which the principle of justice plays a role.
Ethical Issues
One of the more controversial topics in bioethics has been the
discussion over medical futility and stemming from this, quality of
life-specifically, is there a threshold quality of life below which life
cannot be considered worth living. Futility has been described as
having four separate types: physiologic futility (the intervention does
not have its intended physiologic effect); imminent demise futility (the
patient will die before discharge regardless of the intervention);
lethal condition futility (the patient will die, no matter the
treatment); and qualitative futility (treatment is futile because
quality of life is so poor).
In pediatric neurosurgery, decisions regarding futility can often
place physicians in conflict with parents or guardians, either by
parents insisting on treatment that a surgeon feels is futile, or by
refusing treatment that the surgeon feels is indicated and, in the
child's, best interests. Appeals to ethical principles do not
necessarily resolve the conflict easily, as ethical principles can often
conflict.
Informed Consent and Assent
Parents and guardians have traditionally been considered substitute
decision makers for their children for making medical decisions. The
evolution of the process of obtaining informed consent from a patient
has paralleled the development of the ethical concept of autonomy. Young
patients may not have the capacity to fully understand the consequences
of medical decision-making and are not considered to be fully
autonomous individuals. Given this, we ask their parents or guardians to
act as surrogate decision makers.
When parents, as proxy decision-makers for their children, act in a
way that seems counter to the best interests of their children,
physicians are not obligated to follow parental direction. Commonly
encountered examples occur when parents decline life-saving treatment
for their children on religious grounds. Clearly surgeons should do all
they can to make decisions in concert with families but are under due
obligation, legally and morally, to provide or withhold treatment when
they feel it to be in the best interests of young patients unable to
provide consent themselves.
Although most children below the statutory age of consent or majority
do not have the legal authority to provide informed consent, it has
become increasingly common to include children, especially adolescents,
in the decision-make process. This has become popularly known as
obtaining 'assent' to treatment. Obtaining assent from a child includes
informing the child, in an age-appropriate manner, of the nature of the
illness, explaining the likely course of action including testing and
therapy, and assessing the child's understanding of the situation and
willingness to proceed (or refuse) the proposed treatment.
End-of-Life Issues
According to most relevant consensus guidelines regarding end-of-life
care, there is 'no ethical distinction between withholding or
withdrawal of life-sustaining treatment' and physicians should
'aggressively treat pain with analgesic drugs and, when needed, with
heavy sedation, even if these treatments hasten death'. Pediatric
neurosurgeons should play a leading role in ensuring that our patients
with terminal illnesses die with the dignity and comfort they deserve.
Research and Children
Children are considered a potentially vulnerable population in
research ethics. There are several vulnerabilities in pediatric research
subjects that should be considered:
- a) They commonly lack the capacity to make mature decisions;
b) They are subject to the authority of others;
c) They, and their parents, may be deferential in ways they can mask dissent;
d) Their rights and interests may be socially undervalued;
e) They may have acute medical conditions requiring immediate attention that make informed consent impractical;
f) They may have serious medical conditions that cannot be effectively treated;
g) They may lack access to social benefits, such as health care.
Much work continues and needs to be done regarding the ethics of
clinical research in the pediatric population. In the end, a balance
between the need for important clinical research in pediatric
neurosurgery and the protection of potentially vulnerable research
subjects must be found.
When facing an ethical problem that requires rapid resolution, the
first step is to make sure that one is in possession of all the relevant
facts about the natural history of the patient's medical condition, the
alternative forms of treatment, including nonintervention, the recently
reported outcome figures, and the complication rates of each method of
treatment. Next, one must put oneself in the place of the patient. One
assumes the role of sole advocate for the child and considers what one
would want to have done to oneself if one were the patient, not what the
parents or the family might want done for the child. Finally, there
must be no intention to do harm- it is the intention that counts. No two
ethical problems are the same in pediatric neurosurgery, and each one
must be reviewed on its own merits, considering the many issues as they
apply to a particular child
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