An intolerable situation

The Court of Appeal in Wyatt v Portsmouth Hospital NHS Trust [2005] EWCA Civ 1181 purported to put paid to the concept of 'intolerability' as the 'touchstone of best interests' in cases of withholding or withdrawing medical treatment from children (per Munby J in R (Burke) v GMC [2005] EWCA Civ 1003). But recent cases suggest that the judges are relying increasingly on clinical guidelines which retain reliance on the principle of intolerability as the central tenet of decision making.

Before Wyatt, the leading case was Re J [1990] 3 All ER 930, in which Lord Justice Taylor had famously said: ''¦the correct approach is for the court to judge the quality of life the child would have to endure if given the treatment and decide whether in all the circumstances such a life would be so afflicted as to be intolerable to that child'.

It may well be argued that not all the judges in Re J were foursquare behind this approach; nonetheless it was broadly followed for many years. In Wyatt, however, Lord Justice Wall stated that: ''¦the concept of 'intolerable to the child' should not be seen either as a gloss on or a supplementary test to, best interests'. The focus should be on 'best interests' rather than 'intolerability', although 'the latter may be encompassed within the former'.

Clinical guidelines and recent cases

It is always an interesting conundrum as to the extent to which clinical guidelines lead or follow jurisprudence. The most influential guidelines are those drawn up by the Royal College of Paediatrics and Child Health (RCPCH). The present guidelines were issued in May 2004 (pre-dating Wyatt, Burke and Re MB). They have been referred to extensively in the post-Wyatt case law, notably by Holman LJ in Re MB [2006] EWHC 507 (Fam), by Sir Mark Potter in Re K [2006] EWHC 1007 (Fam) and most recently by Mrs Justice Parker in the case of OT [2009] EWHC (Fam).

Sir Mark Potter stated in Re K that the RCPCH guidelines were 'not authoritative as to the law', but were to ''¦provide a framework on which to construct a reasoned and compassionate approach to withholding or withdrawing treatment from patients'.

The RCPCH guidelines identify five situations (see table below) where it may be ethical and legal to consider withholding or withdrawing life-sustaining medical treatment.

Life-sustaining treatment: RCPCH guidelines

It may be ethical and legal to consider withdrawing or withholding treatment in the following situations:

1. the 'brain dead' child;

2. the 'permanent' vegetative state;

3. the 'no chance' situation;

4. the 'no purpose' situation; or

5. the 'unbearable' situation.

In Re K, Sir Mark Potter considered that categories 3 and 4 applied. K, a five-month-old who suffered from a fatal neuro-muscular disorder, was in the situation where treatment would delay death but would neither improve her quality of life nor her potential (the 'no chance' situation) and she had already developed such a degree of irreversible impairment that it would be unreasonable to expect her to bear further treatment (the 'no purpose' situation). The decision was taken to withdraw total parenteral nutrition.

In OT, which concerned a nine-month-old suffering from a rare metabolic disorder, with major brain damage and respiratory failure, Mrs Justice Parker also took the view that the 'no chance' situation and the 'no purpose' situation were applicable. She too decided that it was not in OT's interests that he should suffer any more.

An 'impossibly poor' life?

In both Re K and OT the decision to effectively terminate life was heavily based not only on the present suffering (and lack of pleasure) of the child but also on the prospect of future suffering and lack of pleasure. In this, both judges would arguably have been strongly guided by the RCPCH guidelines in the context of the 'no purpose' situation, which state that:

'Continuing treatment might leave the child in a worse condition than already exists with the likelihood of further deterioration leading to an 'impossibly poor life''¦.If it is likely that future life will be 'impossibly poor' then treatment may be reasonably withheld.'

However, if the test being applied is that of an 'impossibly poor' life, how does that differ from the concept of intolerability? The answer may be suggested by the fact that within the RCPCH guidelines the concept of an 'impossibly poor existence' is discussed under the heading 'An Intolerable Disability'.

While the judges, post-Wyatt, are keen to explicitly avoid nailing their colours to the mast of 'intolerability', for fear of being appealed, it appears that the concept is enshrined in guidelines which are of increasing importance in this field. It may be that, however much judicial disapproval was given to the supremacy of intolerability by the Court of Appeal in Wyatt, it remains the true test when it comes to life or death decisions.

Mr Justice Holman said in Re MB: '...use of that word [intolerability] really expresses a conclusion rather than provides a test'. But precisely because it is a conclusion it is the ultimate test. Once a judge has reached the conclusion that a child's death is either presently intolerable or with continuing treatment will shortly become intolerable, then and only then is she likely to exercise her judgment in favour of withdrawing or withholding life sustaining treatment.

Both the GMC and the RCPCH are due to produce new guidelines in spring 2010. It will be very interesting to assess how those guidelines position the concept of intolerability.