Chapter 128

2116 PART 6 ■ Specific Considerations
of major complications less than 1:100,000 and a risk of minor
complications of less than 1:1,000. 65 It is to be noted that taking a
sample of blood from a vein purely for research purposes is
considered to be low risk rather than a minimal risk. It should also
be noted that in all cases, when parental consent is obtained, the
agreement of school-age children should also be requested by the
researchers. Regardless of age, a child’s refusal to participate in
nontherapeutic research should always be respected, and indeed
where a child becomes upset by a procedure, this should be
accepted as a valid refusal. 66
The concept of the mature minor giving valid consent for
diagnostic or therapeutic interventions has been discussed above
and is widely accepted. It is, however, not certain that this would
apply to nontherapeutic research or experimentation. A practical
approach to this issue would be to obtain parental consent for all
minors, regardless of maturity.
Mature minors, by definition, should be allowed to decide for
themselves in the same way that adults are allowed, with one
limitation: that the greater the risk to the child, the older he or she
must be before a doctor decides he or she is “mature.”
LETTING CHILDREN DIE
It would be impossible to give a full account of the ethics regarding
controversies about withholding and withdrawing treatment in
the limited space available. The Royal College of Pediatrics and
Child Health in the United Kingdom, 67 however, has issued guidelines
on how to approach such decisions and a summary is
provided here.
There are five situations where withholding or withdrawing of
curative medical treatment might be considered:
1. The brain dead child. In the older child, where criteria of brainstem
death are agreed by two practitioners in the usual way, it
may still be technically feasible to provide basic cardiorespiratory
support by means of ventilation and intensive care. It is
agreed within the profession that treatment in such circumstances
is futile and withdrawal of current medical treatment is
appropriate. It is interesting to note that brain-stem death
criteria have no legal basis. In other words, the concept is
accepted by the medical profession and, in turn, the law accepts
the profession’s view that the patient is legally dead.
2. The permanent vegetative state. The child who develops a
permanent vegetative state following insults such as trauma or
hypoxia is reliant on others for all care and does not react or
relate with the outside world. It may be appropriate both to
withdraw current therapy and to withhold further curative
treatment. It must be noted that in these cases the law in most
countries wishes to be involved in the decision-making process
of withdrawing treatment.
3. The “no chance” situation. The child has such severe disease
that life-sustaining treatment simply delays death without any
significant alleviation of suffering. Medical treatment in this
situation may thus be deemed inappropriate.
4. The “no purpose” situation. Although the patient may be able
to survive with treatment, the degree of physical or mental
impairment will be so great that it is unreasonable to expect
them to bear it. The child in this situation will never be capable
of taking part in decisions regarding treatment or its
withdrawal.
5. The “unbearable” situation. The child and/or family feel that in
the face of progressive and irreversible illness further treatment
is more than can be borne. They wish to have a particular
treatment withdrawn or to refuse further treatment irrespective
of the medical opinion on its potential benefit. Oncology
patients who are offered further aggressive treatment might be
included in this category. The assessment of competence of the
child referred to above would once again apply.
In situations that do not fit any of these five categories, or where
there is dissent or uncertainty about the degree of future
impairment, the child’s life should always be safeguarded by all in
the health care team in the best possible way. Clearly, the
recognition that the management of any patient is undertaken not
by medical staff acting on their own, but by a health care team that
also involves nurses, physiotherapists, social workers, and so on
means that a team approach that fully integrates the wishes of the
child and family is essential.
Decisions must never be rushed and must always be made by
the team with all evidence available. In emergencies, it is often
doctors in training who are called to resuscitate. Rigid rules, even
for conditions which seem hopeless, should be avoided; lifesustaining
treatment should be administered and continued until
a senior and more experienced doctor arrives.
The decision to withhold or withdraw curative therapy should
always be followed by consideration of the child’s palliative or
terminal care needs. These may be related to symptom alleviation
(e.g., analgesia or anticonvulsant therapy) or may be related to
dignified and comforting nursing care.
FETAL RIGHTS
This chapter would not be complete without mentioning briefly
the rights of the fetus. It must be pointed out that the law in many
respects is either poorly developed or contradictory. Furthermore,
recognition of fetal rights may result in conflict with those of the
mother. In particular, support or failure to recognise fetal rights is
usually dependant on one’s views on abortion.
Much opposition to legal abortion in the West is claimed to be
based on a concern for fetal rights. Some laws attempt to establish
the right to life of the fetus from the moment of fertilization and
regard the fetus as a person with equal legal status to that of any
other human. The 1978 American Convention on Human Rights
Article 4.1 states that “Every person has the right to have his life
respected. This right shall be protected by law and, in general,
from the moment of conception.” Similarly, the Eighth Amendment
of the Constitution of Ireland recognizes “the right to life of
the unborn” whereas the Federal Constitutional Court of Germany
in 1993 held that the constitution guaranteed the right to life from
conception.
On the other hand, many prochoice groups oppose fetal rights
even when they do not impinge directly on the abortion issue,
because they perceive this as a slippery slope strategy to restricting
abortions. 68 Such groups work to protect and advance reproductive
liberty, including the rights of all women to decide whether
and when to have children, to use contraception, and to safeguard
their own health. In their view, the woman’s health is paramount
and any decision concerning her medical care—including any
decision to continue or terminate her pregnancy—is based solely
on her best interests.