21
Ethical issues in withdrawing life-sustaining
treatment from handicapped neonates
Neil McIntosh
Department of Child Life and Health, University of Edinburgh, Edinburgh, UK
Introduction
Life-sustaining treatment is often classed as medical care, with palliative
treatment being regarded as nursing care. However, optimal care of each type
requires the full involvement of both medical and nursing staV in addition to
the close commitment of the wider family. Life-sustaining treatment implies
that treatment is being given in order to maintain or create the best possible
outcome for the child’s future life. This future might be abnormal but it
would be assumed to be compatible with the self-respect of the family and
later of the infant and child. Such management should be in the best interests
of the child concerned. If life-sustaining treatment is not felt to be in the best
interest of the child by the parents and the medical team, then UK law accepts
that life-sustaining treatment (aimed at alleviating or curing the illness) may
be inappropriately burdensome and may be reasonably withdrawn (Re J,
1981; Re C, 1989; Re J, 1992).
When the clinical team (in conjunction with the parents) makes a decision
of this nature, the same medical and nursing staV then have a duty to oVer the
best possible palliative care. Palliative care should not only consider the
patient’s physical requirements, such as the relief of discomfort, pain or
agitation and other symptoms, but should also address the emotional, social
and spiritual needs. When life-sustaining care is withheld or withdrawn from
an infant, the emotional, social and spiritual needs pertain more to the
parents, but infants are human beings in their own right and it is important
to respect their dignity, however small, sick or apparently damaged they may
be. Even though the decision to withdraw life-saving treatment may be
perceived as a failure of medical care, palliative treatment must be applied
with no less enthusiasm. It is important that all in the clinical team in

tion with the clinical team. There are three broad areas where such decisions
may arise.
∑ Firstly, the extremely preterm infant (born, for example, at 23 weeks’
gestation), where although life may be possible, it may depend on many
months of highly invasive treatment, during which the chances of death are
signiWcant and morbidity more than likely. At this gestation the recent UK
National EPICURE study has indicated only a six per cent survival of
liveborn infants and in the survivors a 60 per cent incidence of disability
(Wood and Marlow, 1999). Although medical management of the ex-
tremely immature infant with intensive care may improve the outcome, as
the boundaries of gestation are pushed back, the anxieties about these
outcomes are also moved back. It seems unlikely that this issue will
disappear.
∑ The second area is that of multiple congenital abnormality – often evident
right from the moment of birth (see above). These infants are becoming
fewer in number with the introduction of antenatal physical abnormality
scans and blood tests. When such diagnoses are picked up in early preg-
nancy, counselling followed by termination is often now a logical and
legitimate choice for the parents.
∑ The third area in which these issues arise are the term babies who are
336 N. McIntosh
severely asphyxiated around the time of birth. Even with the best obstetric
management, occasional infants are delivered in a severely neurologically
depressed condition. Such infants in the past have been labelled as having
suVered birth asphyxia. This reXex diagnosis is not helpful and in only a
minority of cases is it likely to be accurate. In the majority of cases the
attachment of this phraseology leads to a Wnger-pointing medico-legal
exercise which can be expensive both in cash terms and in terms of
emotional stress on both the parents and the involved staV. Epidemiologi-
cal data and careful examination of the individual case more usually fail to

337Ethical issues in withdrawing life-sustaining treatment
interest at the time and for the future. Even if the parents have strongly held
religious beliefs or other views, they are not at liberty to imperil their children
by their decisions. The Children Act 1989 lays more overt stress on parental
responsibility than on parental rights; the United Nations Convention on the
Rights of the Child (1989) also enshrines principles of respect for children
(particularly in Article 12) and has been ratiWed by the British government.
Doctors and nurses also have a duty of care that compels them to protect
their patient’s life and health. If the doctor fails in this duty, she or he may be
guilty of negligence, although a negligence action is not to be expected in
every case that turns out badly. The standard of competence expected of a
doctor is that he or she should act in accordance with practice accepted by a
responsible body of medical people skilled in that particular branch of
medicine, the ‘Bolam’ test for England and Wales (Bolam v Friern HMC,
1957) and the ‘Hunter and Hanley’ test for Scotland (Hunter v Hanley, 1955).
In other words, the specialist must practice with the ordinary skill of his or
her specialty. The acknowledgement that this is a special skill, and in the UK a
skill that follows considerable training, gives doctors alone the right to decide
whether a treatment is medically appropriate. Parents do not have the right to
demand treatments that a doctor may deem to be outside of the child’s best
interest, although they may refuse treatment which they view as not in the
child’s best interest. Doctors have no legal authority to institute treatments in
the absence of a valid consent from someone with parental responsibility, but
emergency treatment deemed to be in the infant’s best interest can be given.
Withdrawal of treatment that is life-saving would only in very rare circum-
stances be done without parental acceptance and consent. Thus communica-
tion, consisting of regular and frequent discussion by the clinical team with
the parents, is crucial to all decisions in the neonatal unit. Information at all
stages must be given in an understandable form to allow reason, deliberation
and comfortable decision-making. Decisions on withholding or withdrawing

interest of the patient. Indeed if this is done knowingly, it is futile
treatment.
(2) The no purpose situation describes the case where the child’s potential of
having an extremely signiWcant degree of impairment is inevitable, and it
would not be reasonable to expect him or her to bear it. Such an
impossibly poor quality of life may relate to the future, in which case
treatment might reasonably not be initiated (e.g. ventilation for congeni-
tal myotonic dystrophy) or to the present, with the likelihood of it
continuing with no foreseeable improvement, in which case the treat-
ment might reasonably be withdrawn. This might apply to the severely
asphyxiated infant where microcephaly, profound developmental delay,
blindness and quadraplegia are believed to be inevitable. This could also
reXect conditions where brain damage is not necessarily the worrying
outcome. For instance, in severe myotonic dystrophy or for the ventila-
tor-dependent infant with broncho-pulmonary dysplasia in cor pul-
monale, compromise of potential cerebral function may not be a con-
cern, but the likelihood of getting the child oV the ventilator to any form
of independent existence may be negligible.
(3) The third case is the unbearable situation, where a family may feel that
further treatment is more than can be borne. They wish to have treat-
ment withdrawn or wish to refuse further treatment irrespective of
medical opinion. Parents may be able to recognize that it is reasonable to
put up with short-term suVering for a good later outcome. There is a
limit, however, to this tolerance – if there are likely to be repeated and
severe problems and invasive therapy, parents may feel that treatment
339Ethical issues in withdrawing life-sustaining treatment