Ethical Consideration

Ethics is concerned with questions of right and wrong. Medical ethics, also known as
bioethics, outlines the standards, principles, and rules of conduct that govern physician
behavior, the practice of medicine, and the conduct of biomedical research and training.
However, although the core principles of medical ethics are immutable, our notion of what
constitutes ethical practice is constantly challenged by evolving cultural norms, particularly
within the milieu of an increasingly multicultural society and the rapid pace of technologic
advancement. Furthermore, there are significant overlaps between the distinct disciplines of
law and medical ethics, such that evolving standards of one affects the other. 1 Thus a new
statute or court ruling sets a standard of conduct that often compels adjustment in the rules
of ethical conduct. Conversely, the pronouncement of new ethical guidelines by professional
medical organizations frequently influences the work of legislatures and the courts. Ethics
tells us what we ought to do but the law stipulates what we must do. Together, law and
ethics define the rules of conduct within which medicine is practiced, but like medicine itself,
both are dynamic disciplines that undergo constant adjustment.
Etika selalu dihubungkan dengan pertanyaan benar atau salah. Etika kedokteran, atau
bioetik, menguraikan standard, prinsip, dan aturan yang mengatur perilaku dokter, praktek
kedokteran, dan melakukan penelitian dan pelatihan. Namun, meskipun prinsip-prinsip
utama dari etika medis tidak bisa diubah, gagasan kita mengenai praktik etis terus
ditantang oleh perkembangan norma budaya, khususnya dalam lingkungan masyarakat
dengan bertambahnya banyak budaya dan cepatnya peningkatan kemajuan teknologi.
Selain itu, ada terjadi kesenjangan antara hukum dan etika medis, sehingga perkembangan
salah satunya bisa mempengaruhi yang lain.
beneficence, nonmaleficence, autonomy, and justice. The first two of these
principles, beneficence and nonmaleficence, are derived from the Hippocratic obligations to
act in the best interests of the patient and to do no harm. The other two principles,
based on relatively recent concepts, are (1) autonomy, which respects the right of
competent persons to give informed consent for medical treatment and to have control over
their bodies and (2) justice, which involves the fair and equitable distribution of the benefits
(and risks) of medical care to all persons.
Although principle-based and duty-based ethics tend to be given the most attention,
some ethicists make a strong case for virtue-based ethics and contend that virtue is
derivable from the nature of medicine as a human activity and is an irreducible element in
medical ethics.3 Ethical principles, per se, focus on the action or actions that give rise to
dilemmas, such as withdrawing life-sustaining treatment from a terminally ill patient. In
contrast, virtue ethics emphasizes the agents (physicians) and the recipients (patients) of
principle-based actions and decisions. Pellegrino and Thomasma cite the relevance of virtues
such as trust, compassion, prudence, justice, courage, phronesis or common sense,
fortitude, integrity, honesty, and self-effacement in confronting practical problems
such as care of the poor, research with human subjects, and the conduct of the healing
relationship.3 In practice, physicians ethical behavior is shaped as much by the core ethical
principles as by the special bond that sickness and the response to it creates between healer
and patient. In addition, pediatric surgeons are challenged by issues that are distinctive to
the profession of surgery and other factors that are unique to the care of infants and
children.
In this chapter we review some of the basic ethical concepts and responsibilities
pertinent to pediatric surgery and explore thorny issues related to the extremes of prenatal
care and the end of life.We address common surgical and ethical dilemmas in operative
management, such as in adolescent bariatric surgery. We also highlight new areas of ethical
concerns such as surgical error, and aspects of professionalism in the relationships between
physicians and industry. Finally, we discuss the ethical imperatives of multiculturalism and
why the prevailing ethical landscape should not deter much needed research and innovation
in pediatric surgery.
Resolution of Ethical Dilemmas
The essence of pediatric surgery was underscored by Potts in his classic monograph The
Surgeon and the Child, in which he noted that the satisfaction of correcting a deformity in a
newborn infant lies in the fact that all his life lies before him. Parents hope for miracles, but
are grateful for the best that can be given by a mere human being.
This profound statement is applicable, whether the pediatric surgeon is repairing a
major congenital anomaly, treating a devastating traumatic injury, or resecting a
malignancy. However, in the course of providing the best possible care to children and their
families, the pediatric surgeon will occasionally encounter ethical and moral issues.
A classic moral dilemma arises when two or more conflicting ethical principles
support mutually inconsistent actions. A common situation is when there is a conflict
between the principles of autonomy and beneficencewhen parents desire a course of
treatment for their child that does not align with the opinion of the pediatric surgeon. The
pediatric surgeonmay also encounter moral dilemmas in the form of moral uncertainty and
moral distress when the prognosis is unclear for a given condition, when two or more equally
valid treatment options are available, or when parents disagree with each other, or the
surgical recommendations, or both. Therefore the need often arises to resolve the moral
basis by which decisions should be made, who should make those decisions, and how
decisions should be implemented.
Little has identified five pillars that mark the moral domain of the surgeon-patient
relationship: rescue, proximity, ordeal,aftermath, and presence. These factors may be
present in other therapeutic relationships as well, but they have a special intensity in
surgery. The term rescue acknowledges the elements of surrender and dependency that
patients and their families experience when they have little control over the proposed
surgical remedy. This situation can be mitigated if the pediatric surgeon confronts and
negotiates the patients (and familys) surrender and dependency within the context of the
surgeons power. Proximity refers to surgeons acknowledgment of the close, intimate
interactions they have with their patient, who must forgo their autonomy, acknowledge
dependency, face risk, and yet place trust in the surgeon. Presence is both a virtue and a
duty for surgeons, to be a visible and engaged presence throughout the entire surgical
experience. In pediatric surgery, this professional obligation extends to the long-term follow-
up of patients, often into young adulthood.
The foregoing ethical and moral principles and virtues are brought to bear in the
ordinary course of a pediatric surgeons daily work, in which ethical dilemmas are frequently
encountered. Resolution of ethical problems in a given pediatric surgical patient requires a
patient-centered approach that uses all members of the health care team working together
in a manner that promotes respect for all parties and all views.
As we and others have noted, successful outcomes require that theteam(1)
developcommonmoral language for the discussion of moral issues, (2) have training in how
to articulate their views about issues, (3) have common experiences on which to base
recommendations, and (4) agree on a moral decisionmaking method for all to use in the
course of their deliberations.

Bayliss and Caniano previously outlined the following set of guidelines to provide a
framework for the effective resolution of difficult moral problems:
1. Identify the decision makers. For most cases in pediatric surgery, the decision makers
will be the parents, unless the patient is a mature minor.
2. Ascertain value data from the parents and other relevant family members. These may
include their views on the sanctity of life, spirituality and religious beliefs, cultural norms,
and community values.
3. Collect all relevant medical information, including the prognosis. Clarify the areas of
uncertainty and identify whether additional diagnostic testing would be of value in the
decision making process.
4. Define all treatment options, including their benefits, risks, and chances of achieving the
desired outcomes.
5. Provide the parents with a professional recommendation for the best treatment option.
6. Seek a consensus resolution that can be accepted by all participants.

In order for the above paradigm to be successful, the health care team must accept
that rational people of good will may hold divergent views that are irreconcilable, even after
extended discussions. The goal of reaching a consensus decision should be viewed as a
successful outcome for all participants.

Informed Consent and Assent

The doctrine of informed consent is based primarily on the ethical principle of respect for
individual autonomy, but also on beneficence and justice. These three pillars, established in
the Belmont Report7 to guide human subjects research, have become the basis for ethical
and legal requirements for informed consent for research as well as clinical care. Respect for
patients autonomy recognizes the right of each person to make their own decisions. The
principle of beneficence requires physicians to propose only those interventions intended to
promote the well being of the patient, and justice requires that the patient be treated in the
same manner as any other individual under similar circumstances.
In pediatric surgery, fulfillment of a childs autonomy typically requires surrogate
decision makers (in most cases, the parents) to speak, understand, and consent on behalf of
infants, children, and adolescents. In some cases, courtappointed guardians or other
spokespersons may fulfill this role, depending on applicable laws. In some jurisdictions, and
in certain specific circumstances, adolescent patients may be granted authority to make
their own decisions about the health care they receive. This situation is particularly
applicable to adolescents with chronic illnesses, such as sickle cell disease, cystic fibrosis,
and advanced malignancies. However, when an adolescents consent to or refusal of surgery
is in direct opposition to parental wishes, the assistance of social services and legal counsel
may be required.
Recognition of children as persons with inherent rights underscores the necessity
for their participation in the decisionmaking process. Therefore, the traditional emphasis on
the childs best interests may be insufficient to address the childs rights, and although
the informed permission given by parents may be sufficient for ethical purposes and is
required for legal purposes, it doesnot satisfy the strictmoral standards of the doctrine of
informed consent. Therefore, a specific role has been advocated for children in their own
decision making, particularly
for older children and adolescents. This concept of pediatric assent was articulated by
William Bartholome when he wrote, in 1982, that assent of the child is indeed an idea
before its time. It is a fragile idea that can easily be crushed amidst the boulders of consent,
autonomy, rights, and competence. Its an idea that is so foreign to adult reality that its
central thrust is missed even by astute minds.
Several decision-making models have been proposed as a template for pediatric
assent, but they differ primarily on the relative roles assigned to the child and the parents
and whether they should be guided by the principle of autonomy or follow a best-interests
design.10 Nevertheless there is broad agreement that, depending on the circumstances, the
assent of the pediatric patient should be sought as appropriate to their development, age,
and understanding in conjunction with informed permission from the parent or legal
guardian. Every state has enacted minor consent statutes that seek to determine instances
in which children can give their informed consent, as highlighted in a policy statement by
the American Academy of Pediatrics (Table 15-1).