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End of life decisions
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     Clinical decisions are increasingly shaped by legal judgments

    In July this year the court of appeal allowed the appeal of the General Medical Council (GMC) in the case of R (Burke) v the GMC,1 setting aside the high court declaration that the GMC guidance on withholding and withdrawing life prolonging treatment was unlawful and in breach of human rights.2 This welcome judgment represents a much needed endorsement of clinical discretion and judgment.

    Mr Burke, tragically, has a progressive degenerative neurological condition and will eventually require artificial nutrition and hydration. He fears that on losing the ability to communicate doctors might decide that his quality of life is such that they should withdraw artificial nutrition and hydration, considering this to be futile treatment, and that this would cause him acute mental and physical suffering in contravention of his human rights. He sought judicial review of the GMC guidance on the withdrawal of artificial nutrition and hydration.3

    The high court judge ruled that an advance directive to require artificial nutrition and hydration would be valid, and that a number of paragraphs in the GMC guidance were unlawful as there was insufficient emphasis on the patient's rights to require, rather than refuse, treatment. He also held that in determining the best interests of the incompetent patient, the more stringent standard of whether a patient's life had become "intolerable" should be used in relation to the withdrawal of life prolonging treatment such as artificial nutrition and hydration. This decision could have severely restricted clinical judgment and discretion in relation to artificial nutrition and hydration and by implication other forms of treatment considered to be clinically useless. Although the GMC's won its appeal against the judgment that its advice was unlawful, the court of appeal lost an opportunity to resolve key ethicolegal issues regarding decision making at the end of life.

    The court of appeal restricted itself to the specific circumstances of the claimant, and described the high court judge's declarations as going "far beyond the current concerns of Mr Burke."1 The appeal court was satisfied that Mr Burke was competent and that if he wished to continue to receive artificial nutrition and hydration in the circumstances envisaged it would be unlawful to discontinue it. When a competent patient indicates his or her wish to remain alive by artificial nutrition and hydration, any doctor who wilfully discontinues such treatment would be in breach of duty, and guilty of murder. The rights of a competent patient in this respect have therefore been judicially endorsed.

    What would have been helpful for doctors would have been greater analysis about withdrawing artificial nutrition and hydration in incompetent patients. The appeal court chose not to enlarge on this issue, pointing out the danger of making rulings on matters of principle divorced from an actual case. Incompetence was not relevant to Mr Burke's position. The test for withdrawal of artificial nutrition and hydration in an incompetent patient is whether it would be in the best interests—in the widest sense—of that patient.

    However, what standard is to be applied when assessing best interests? Should it be measured using a "balance sheet" approach,4 where the pros and cons are evaluated, or should it be the more stringent standard of "intolerability" as proposed by the high court? Using a balance sheet standard, clinical judgment may be given greater scope, but with the intolerability standard there is a prima facie presumption that life prolonging treatment should be continued if there is some benefit, unless doing so is intolerable for the patient. Here clinical judgment carries less sway.

    The appeal court's approach to this thorny issue was singularly brief. It held that it is not possible to attempt to define what is in the best interests of a patient by a single test, and therefore the decision to provide or withhold artificial nutrition and hydration must depend on the particular circumstances of each case. In clinical practice, this can be a poignant and ethically challenging decision, particularly in the sentient but incompetent patient who might be capable of being kept alive indefinitely by artificial nutrition and hydration. The reluctance of the court of appeal to engage in this debate was justified as not being appropriate on the grounds that what was said in the lower court was hypothetical. However, when a patient is close to death, both courts concurred that the purpose of care was to ease the patient's death rather than prolong his or her life and that in this situation intolerability is not necessarily the standard of the patient's best interests.

    An advance directive that is valid and relevant to the circumstances refusing continuation of artificial nutrition and hydration in the incompetent patient should be respected on the grounds of autonomy and self determination. However, what of the opposite situation requiring life prolonging treatment? In the original high court judge's analysis such an advance directive should be respected. However, the court of appeal thought this would be incompatible with the provisions of the (not yet in force) Mental Capacity Act 2005. Section 26 of the act requires compliance with a valid advance directive to refuse treatment. With regard to an advance directive made otherwise section 4 does no more than require this to be taken into consideration when determining the best interests of the patient. However, the legal implications of this point have yet to be tested in the courts.

    Meanwhile, doctors should understand and familiarise themselves with current GMC guidance. Clinicians at the sharp end of practice must continue to do as they have always done—approach end of life decision making with empathy, compassion, and reasoned clinical judgment and try to reach a consensus on best interests with the patient, relatives, and wider healthcare team. The high court ruling raised several key issues regarding end of life decisions and the "dilemma at the bedside,"5 which were not addressed by the court of appeal. Given time these will surface again, perhaps in the form of a human rights challenge, since many still fear that doctors may make negative stereotypical assumptions about their quality of life at the stage of incompetence. Doctors need to recognise the limitations of their clinical judgment in this context and seek legal advice when there is disagreement about the patient's best interests.

    Ash Samanta, consultant rheumatologist

    (ash.samanta@uhl-tr.nhs.uk)

    Leicester Royal Infirmary, Leicester LE1 5WW

    Jo Samanta, lecturer in law

    De Montfort University, Leicester LE1 9BH

    Competing interests: None declared.

    References

    R (the application of Oliver Leslie Burke) v General Medical Council (defendant) and Ors EWCA Civ 1003.

    R (Burke) v General Medical Council & Disability Rights Commission (interested party) & The Official Solicitor (Intervener) EWHC 1879.

    General Medical Council. Withholding and withdrawing life-prolonging treatments: good practice in decision-making. London: GMC, 2002.

    Re A (Male Sterilisation) FLR 549.

    Samanta A. Death, dying and the doctor: a dilemma at the bedside. Contemporary Issues in Law (in press).