Health professionals often face significant dilemmas while considering the validity of offering or continuing life-sustaining treatment in critical patients (McPherson et al, 2019).
Since the inception of the Human Rights Act 1998, there has been great deal of speculation regarding its impact on medical decision-making, although the true effect may be unknown until a body of case law has developed, illustrating how the legal system interprets the Act (Maclean, 2000; Bahadur, 2001; Woogara, 2001). What is clear, however, is that this Act does not represent anything new, but only reflects, very closely, the existing General Medical Council (GMC) guidelines of Good Medical Practice (GMC, 2013).
Historically, clinical decisions were based upon ethical standards on issues surrounding human dignity and were guided by patients’ consent and best interests. These are largely compliant with the Act. In the future there will be multiple instances where this legislation will be used to challenge medical decisions. It is therefore essential for clinicians to take account of these regulations, ensure their decision-making is transparent and be prepared to withstand scrutiny (Samanta and Samanta, 2005; Gillon, 2015).
It could be argued that a health professional should take adequate measures where ‘right to life’ is at risk, and that withholding any life-sustaining treatment could be deemed as a breach of article 2 of the Act. However, this comes with certain caveats. The Act is constrained by the concept of ‘futility’. If treatment is deemed to be ineffective and arguably would increase a patient's distress, withholding it would not breach article 2 (Samanta and Samanta, 2003; Howard and Pawlik, 2009). Futility, however, needs appropriate validation by a suitable panel of experts prior to treatment withdrawal, on a case-by-case basis. In Burke v GMC, the court made it clear that such decisions should be based on patients’ best interests, were not to be taken by doctors alone behind closed doors, but rather should be a multidisciplinary decision (involving next-of-kin), based upon ‘welfare appraisal in the widest sense, taking account, where appropriate, [of] a wide range of ethical, social, moral, emotional and welfare considerations’ (R (on the Application of Burke) v General Medical Council, 2004).
In the case of a 19-month-old, ‘I’, suffering from an irreversible lung condition, progressive multi-organ failure with poor life-expectancy, experts advised nonresuscitation in the event of cardiorespiratory arrest, with palliative care to ease his suffering and permit his life to end with dignity. Ruling on this case, Mr Justice Cazalet stated that this decision was in the child's best interest as further prolongation of treatment would only add to his suffering, hence Article 2 was not infringed (A National Health Service Trust v D & Ors, 2000). Futility thus supports withdrawing of life-prolonging treatment (artificial nutrition, hydration) where non-treatment is in the patient's best interests as in the cases of ‘Mrs H’ and ‘Mrs M’ (NHS Trust A v H; NHS Trust B v M, 2000), who were both in a persistent vegetative state (Winter, 2000; Griffith, 2013; Welie and ten Have, 2014).
In the present day, a great deal of controversy exists where ‘potentially’ life-saving treatment (expensive drugs or treatment elsewhere) is refused on grounds of scarce resources or lack of evidence that such treatment would be effective, especially if there is a hint of rationing of services (Paris et al, 2017; Bhattacharya et al, 2019). In deciding on these cases, health authorities must be able to justify interfering with a patient's article 2 rights, be transparent, logical, non-discriminatory and able to withstand scrutiny. Unsurprisingly, such decisions are frequently challenged. In three cases—Charlie Gard, a child with leukaemia in Cambridge Health Authority, and Alfie Evans—courts upheld the decision of the respective health authorities as the potential life-saving treatments were deemed to be experimental at best (R v Cambridge Health Authority, 1995; Freckelton, 2017; Great Ormond Street Hospital v Yates, Gard and Gard, 2017; Paris et al, 2017; Alder Hey NHS Trust v Evans, 2018; Bridgeman, 2018; Dyer, 2018).
The following issues seem to be pertinent. Firstly, the definition of a patient's best interest at any point in time rests upon the fine balance between ‘right to life’ versus ‘futility’. However, are these two separated by a well-defined line or a ‘grey zone’? I believe, in many cases, it is the latter, leading to extensive medico-legal debate. Having to explain the concept of futility to a patient's loved ones is often a clinician's worst nightmare. Hence, where possible, such decisions should be based upon hard facts—establishing failure to respond to ongoing treatment and how the burden of ongoing treatment is negatively affecting the patient's quality of life—rather than presumptive evidence. As stated above, health professionals should also be prepared to defend their decisions from a medico-legal perspective.
Secondly, in the current cash-strapped healthcare system, futility has been used to defend medical rationing (Bhattacharya et al, 2019), especially when evidence supporting novel treatments are weak. The cases of Charlie Gard and Alfie Evans, discussed above, point towards such trends. It is important to remember, however, that the evidence obtained from the treatment of rare diseases takes a long time to be established in the form of guidelines. Therefore health authorities tend to base their decision of ‘futility’ in current patients on historic evidence and personal views, which may be questionable and therefore are likely to encounter legal challenges.
In my opinion, when it comes to rare disorders, the medical fraternity should keep a more open mind with regard to treatment options, although the feasibility of undertaking the cost of such interventions are often a challenge in a publicly funded healthcare system. This remains an area of debate.
In summary, although the right to life is upheld by the law, special circumstances may arise where treatment withdrawal is dictated by the overall best interests of patients and multidisciplinary decision-making by health professionals.