proxy for his children should be investigated before his instructions are complied
with. If this seems officious or embarrassing, it may help to remember that schools
too have to explore this issue before accepting a father's authority over a pupil.
10.1.2 Acting in the best interests of children
The proxy powers conferred by parental responsibility must by law be exercised in
the best interests of the child. What is in the best interests of critically ill children
was explored by the Royal College of Paediatrics and Child Health in 1997. Their
report,Withholding or withdrawing life saving treatment in children. A framework for
practice[6], identified the following five situations in which palliation rather than a
continuation of life-saving treatment `might be considered':
- where brain-stem death has been diagnosed;
- where the child has developed permanent vegetative state;
- where the child has `such severe disease that life sustaining treatment simply
delays death without significant alleviation of suffering'; - where survival with treatment is possible but will be accompanied by an
intolerable degree of physical or mental impairment; - where `in the face of progressive and irreversible illness, further treatment is
more than can be borne'.
Typical of the last category would be a child with cancer whose initial treatment
has failed. The first and second categories are self-explanatory. The third category
is exemplified by the 1999 case ofRe C a minor)medical treatment)41997) 4in
which, incidentally, the court explicitly approved the report's approach to this type
of case). C was a severely disabled and terminally ill little girl, aged 16 months at
the time that her case went to court. She suffered from spinal muscular atrophy,
type 1, weighed only 5.4 kg, and her condition was deteriorating. She nevertheless
seemed to interact with her parents, appearing to recognise them and smiling at
them. In the view of C's medical team, her interests demanded the withdrawal of
ventilator support, non-resuscitation in the event of respiratory arrest, and pal-
liative care till she died. C's parents, who were orthodox Jews, wanted her to be
kept alive as long as possible. In view of the disagreement, the health authority
applied to the High Court, which authorised the doctors to ease C's suffering, and
to permit her life to end peacefully and with dignity.
The situations which trouble all concerned most, are undoubtedly those which
make up category 4 above and involve children who with medical intervention will
survive indefinitely, but whose survival entails pain and distress. Several such
cases have come before the courts. One of the earliest and most controversial was
that ofRe J a minor)wardship: medical treatment)41990). J had been born at 27
weeks gestation, with very severe and permanent brain damage. The medical
evidence, some four months after J's birth, suggested that he was probably blind
and deaf, had epilepsy, would probably develop serious spastic quadriplegia, and
was unlikely to develop speech. J was however judged to feel pain to the same
extent as other babies. He had been oxygen dependent for significant periods in
his young life and suffered sudden collapses resulting in the need for artificial
ventilation. The medical team proposed that they should not reventilate J the next
196 Nursing Law and Ethics