‘We have decided to withdraw organ support; as ongoing treatment seems futile …’
Within current medical practice, as the lines between life and death become increasingly blurred, we, as physicians, often find ourselves facing the decision whether to continue treating a critically unwell patient. These patients have often lost decision-making capacity because of a combination of the severity of their illness and the medication used for sedation and analgesia. A point may come when we feel that ongoing life-sustaining treatment should be withdrawn, or further interventions withheld, and we may justify this decision on the grounds that ongoing treatment is ‘futile’.
The concept of medical futility has existed for millennia. Hippocrates1 advised physicians ‘to refuse to treat those who are overmastered by their disease’, realising that in such cases medicine is powerless. The state of being ‘overmastered’ by a disease is subjective, as what may be intolerable to one person may be acceptable to another. Owing to this inherent subjectivity in defining what constitutes a burdensome existence, defining when a patient has been ‘overmastered’ is not straightforward. The fact that many critically unwell patients lack capacity and cannot engage in decision making (defined in legal parlance as ‘incapax’) with their physicians only adds to the difficulty of deciding when ongoing treatment of that patient should stop.
The use of the word ‘futility’ in the context of withdrawal or withholding of medical treatment may therefore be problematic. The term ‘futility’ itself has become a catch-all phrase often applied equally to those at the point of imminent demise or those who have failed to recover as hoped. A patient who is brain dead, for example, clearly has no chance of recovery and in European medical practice the vast majority would be in favour of withdrawing treatment. In patients whose ICU admissions follow a more protracted course, the endpoint of treatment may be harder to identify. Physicians may choose to present the ongoing treatment of a patient as ‘futile’ if they believe that there is no longer a realistic chance of a successful outcome. By using the term ‘futile’ without further qualification, they absolve themselves from having to define specifically what would be considered to be successful, or unsuccessful, outcomes for that particular patient. Using medical futility as a basis for withdrawing or withholding treatment also places the locus of decision making solely in the hands of physicians, and potentially ignores the social, spiritual and emotional aspects of the patient's existence which, according to the Courts, may well enhance the patient's quality of life to tolerable or even enjoyable levels despite their illness.
There have been numerous attempts in the literature to define ‘futility’ objectively using evidence-based empiricism. Acceptance of such an evidence-based definition would prevent physician-directed paternalistic decision making. Schneidermann et al.2 attempted to formulate a quantitative definition of futility. They proposed that if a physician concluded, either through personal experience or the experience of colleagues, that a treatment or intervention has been ‘useless’ in the last 100 cases, pursuing it as a treatment option is futile. This approach may appeal to physicians trained in the scientific method and, in fact, was quoted by an expert witness in the initial hearing of Aintree v James in the Court of Protection (see further). The proposal places uselessness at the centre of its definition of futility but does not define ‘useless’. A treatment deemed ‘useless’ to a physician who measures success in terms of 1-year survival, for example, may not be useless to a patient, who may find a few extra months of survival valuable beyond measure.
In 2013, the UK Supreme Court heard the case of Aintree University NHS Foundation Trust v James. This is a case of much relevance to intensivists as it is the only UK case to date involving an ‘incapax’ ICU patient whose treating physicians sought to withhold life-sustaining treatment on the grounds that such treatment was futile. A short synopsis of this case is as follows.
In 2012, Aintree Hospitals NHS Trust sought a declaration from the Court of Protection seeking to endorse a treatment plan allowing the Trust to limit the therapeutic options available to Mr James, namely to not re-institute vasoactive medication or renal replacement therapy (which he currently no longer required) and not to initiate cardiopulmonary resuscitation should he have a cardiac arrest. Mr James was a patient in his sixties who had endured a long period of multiorgan failure in the ICU and who now appeared to be ventilator dependent as a result. The declaration was not granted: the judge in the case thought that ‘recovery does not mean a return to full health but to a quality of life that [Mr James] would regard as worthwhile’ and the arguments in favour of a declaration ‘significantly undervalue the nonmedical aspects of [Mr James’] situation’. This refusal to grant a declaration in support of the Trust's treatment plan was then overturned by judges in the Court of Appeal in 2013, on the grounds that no reasonable person could want the existence that Mr James was experiencing. This latter judgment invoked the concept of the ‘reasonable patient’ and opined that ‘[Mr James’] wishes, if they were to be the product of full informed thought, would have to recognise the futility of treatment, and that treatment would be extremely burdensome to endure’. Mr James’ family, in contrast, provided eloquent testimony that Mr James could recognise, smile and laugh appropriately with his family and appeared to gain genuine pleasure from his existence and, were he able to speak for himself, would wish to be given every opportunity to continue living. Later, the Supreme Court stated that this testimony should have been given more weight by the Court of Appeal, as the concept of the ‘reasonable patient’ does not exist in English statutory legislation concerning the welfare of the ‘incapax’ patient. The Supreme Court went on to overturn the Court of Appeal verdict, putting much greater value on Mr James’ likely wishes as expressed by his family. Lady Hale, one of the Supreme Court Judges, expressed this as ‘insofar as it is possible to ascertain the patient's wishes and feelings, his beliefs and values or the things which were important to him, it is those which should be taken account because they are a component in making the choice which is right for him as an individual human being’. Thus, the notion of futility would be defined not by a physician-centric objective model as per Schneidermann et al.,2 but rather as a patient-centric subjective decision process.
Although the burdens of illness and treatment in the ICU are undoubtedly ‘heavy’, they may be tolerable to an individual if he feels the quality of his existence is sufficiently pleasurable to outweigh this. Only when we are certain that a treatment has no value should it be withdrawn or not offered, but where there is dubiety or merely a failure to improve, we have a duty to ascertain, as far as we are able, what the patient would want in their current situation. This is not necessarily a quick or an easy thing to do but, with an open and honest approach to communication with our patients and their relatives, we can achieve a harmony between what we believe are their ‘medical best interests’ and their ‘best interests as a whole’. Above all though, we owe it to our patients not to fall back on the lazy and ill-defined concept of ‘futility’.
Acknowledgements relating to this article
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1. Hippocrates, Lloyd G. Hippocratic writings. London: Penguin Classics; 1983; (In press).
2. Schneidermann LJ, Jecker NS, Jonsen AR. Medical futility: its meaning and ethical implications. Ann Intern Med