Withholding and withdrawing life sustaining treatment in children; when, why and who should decide?
Decisions
to withhold or withdraw treatments necessary to sustain life in
children, such as the provision of breathing support, are poignant and
difficult. Where disputes do occur (as in the case of Amber Hartland)
they may arouse intense public and media interest.
Health
professionals have ethical and legal duties to offer treatment that is
effective and that confers more clinical benefits than harms. Treatment
that fulfils these criteria is regarded as being in the ‘best interests’
of those to whom it is offered. Conversely there is no legal obligation
on professionals to provide treatment that is not in a child’s best
interests, a fact that parents may find hard to accept.
Balancing
clinical benefits and harms is only one component of a broader ethical
concept of ‘best interests’. Provision of treatment should also respect
the right of patients to make informed, self-determined (autonomous)
decisions. This applies to those who have the capacity to make such
choices, but what of those who do not? Parents (or rather those with
legal parental responsibility) have the ethical and legal right to make
decisions on behalf of children, provided that they act in their best
interests.
In what circumstances might provision of
life-sustaining treatment no longer be in a child’s best interests and
when might proposals to withhold or withdraw it be regarded as ethical
and legal?
The Royal College of Paediatrics and Child Health
(RCPCH) envisaged 5 such situations. Four of these are relatively
uncontroversial, diagnosis of brain stem death, a persistent vegetative
state, a child who is actually dying from multiple organ failure (the
‘no chance’ situation), and the child whose symptoms, e.g. chronic
breathing problems in advanced cystic fibrosis, are more than they can
bear (the ‘unbearable’ situation). The fifth situation is less so.
This occurs when there is ‘no purpose’ in continuing life sustaining
treatment from which the child cannot benefit, e.g a child may be able
to survive with breathing support, but may develop or already have such a
degree of physical or mental impairment that it would be unreasonable
to expect him or her to bear it. Here, parents and professionals may
sincerely hold differing views about ‘impairment’, ‘unreasonable’ and
‘best interests’, and who should decide for this
child. Parents may dispute the clinical facts or have religious beliefs
or values that do not enable them to accept a proposition to withhold
or withdraw treatment, e.g. the child with rapidly advancing cancer
whose parental beliefs in the sanctity of life lead them to insist on
continuing chemotherapy to the moment of death.
In most case,
however, even difficult decisions are made in partnership with parents.
Indeed, follow up studies of bereaved parents have shown that they
often feel they have made the ‘right’ decisions.
The process of
decision making should allow adequate time to assemble all relevant
clinical facts, e.g. by independent second opinions and to ensure that
the parents understand them as well as circumstances allow. It also
involves gathering information about parental views, preferences,
beliefs and values, and ensuring that the team caring for the child
understand them. This process should involve frequent discussions
between parents, professionals and others, e.g. religious advisors and
should foster mutual trust and respect. Even so, in some cases disputes
may arise. Some result from communication difficulties, or even
mistrust. It is important to analyse why they have occurred and to offer
appropriate support provided by mediation and conciliation services,
faith groups, patient advocacy and liaison services.
The
availability of effective palliative care for children and families is
increasingly recognised and helpful. In some centres clinical ethics
services provide support to all parties, analyse the ethical issues
involved and discuss the principles that might be used to decide them.
They do not themselves make binding treatment decisions.
In a
small minority of cases resort to courts is necessary so that the views
of all parties can be represented, and a dispassionate and objective
ruling on the broader issue of what constitutes a child’s best interests
can be obtained. The process of litigation carries its own burdens, it
is inherently adversarial and may produce unwanted publicity and media
coverage. For many therefore these particularly difficult individual
decisions will remain ones that they would wish to make in private.
Vic Larcher
Consultant ethicist Great Ormond Street Hospital for Children NHS Trust
July 2008
Contact information:
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