End-of-life decisions should never have been a matter for the courts

Yesterday, the court of protection ruled that legal intervention should no longer be necessary when making decisions regarding the end of life. Understandably, this is a hugely contentious issue for the majority of people; sadly, it is likely to be a consideration for most, if not all of us, at some point, when considering either the end of our own lives, or of those dearest to us.

However, where the trouble arises is not where a patient is terminally ill and a decision must be made regarding their palliative care programme – rather, yesterday’s case and many more which have been well-documented over the years focus on patients who are subsisting in an unconscious state, which may be of a varying degree of severity or longitude, but who may be kept alive indefinitely thanks to recent advances in medical technology and care. The landmark case of Anthony Bland marked something of a change in attitude, where previously any suggestion of withdrawing medical treatment was deemed little short of barbaric. Following the Hillsborough disaster of 1989, Bland had been left in a permanent vegetative state for over 3 years, and was entirely dependent upon a ventilator and artificial feeding and hydration to produce a condition conducive to human life. However, after a legal battle in which his own family argued for Bland’s “right to die”, the court concluded that treatment could be withdrawn without the risk of legal repercussions for his medical team.

Since Bland, however, the issue has not become any easier, nor has the controversy around the end of life subsided. Perhaps in the case of Anthony Bland, many people would agree that continuing to live without any detectable brain function and, it was suggested, as a body which, for all intents and purposes, had naturally “died” years earlier, is an entirely undesirable situation to force upon a patient. However, it seems that, understandably, many people are far less comfortable with the notion of withdrawing medical care from a patient who exhibits some form of cognitive activity, no matter how limited.

Indeed, yesterday the court of protection was faced with the case of “M”, a woman who had long-suffered with Huntington’s disease, for which there is no cure. As a result of her condition, she had slipped into a minimally conscious state (MCS), and her mother had applied to the court to authorise the legal withdrawal of M’s feeding tube, which would inevitably lead to her death. In previous cases, the courts have been extremely reluctant to authorise withdrawing medical treatment from patients in MCS – in a separate case in 2011, the court refused permission to end the patient’s life on the basis that she “did have some positive experiences” and therefore withdrawing treatment could not be considered to be in her best interests. This is where the problem lies. In 2011, the patient’s family appealed for her “right to die” based on what they thought that she would herself have considered to be the best course of action. Clearly, where someone is not physically or mentally capable of expressing their wishes at the time of this decision being made, all interested parties must proceed with extreme caution so as to avoid instances of abuse, for example by a relative with a hidden agenda. However, it is probably safe to assume that for the majority of families trying to make a reasonable decision under such tumultuous circumstances, they are simply acting in what they would consider to be their loved one’s best interests. It truly is difficult to harmoniously concur with a legal judgement made by no more than a mere stranger, with no tangible rapport with either the patient themselves nor their family members, no matter how well-intentioned that judgement may be.

What I myself find disturbing is the latent notion that in many cases where the decision is made to preserve life, that the judgement appears to be underpinned by a strong religious conviction. Whilst theological beliefs are rarely referred to explicitly by members of the judiciary, a common theme appears whereby life is seen to be sacred, compelling protective measures to be taken at all costs. Personally, I see nothing sacred about being forced to live in a condition whereby I cannot appreciate the presence of family members, cannot articulate my own thoughts and desires, and cannot even feel pain. I can think of nothing more torturous than the existence likely experienced by M – if you can even call it that – and in particular, being held to a sacrosanct conjecture which I myself do not observe. Some may argue that where a patient is in such a desperate state that they are unaware of even their own existence, it would be impossible for them to resent being kept alive. However, it is difficult to see who benefits from this outcome: certainly not the incapacitated patient themselves; nor the grieving relatives, lamenting the plight of their loved one. It seems, therefore, that the cautious approach so commonly taken by the courts demonstrates no more than the adoption of a defensive strategy intended to safeguard against the abuse of an incapacitated patient’s vulnerability.

Yesterday’s ruling will hopefully go some way to facilitating a less arduous process for those who find themselves in the wholly unenviable position of orchestrating the end of a family member’s life. What must be remembered is that Mr Justice Jackson referred solely to cases in which both the medical team and family members concur that it would be in the patient’s best interests to withdraw their treatment. Those concerned about abuse powered by self-interest need not concern themselves with yesterday’s judgement, as unanimous agreement by all concerned parties robustly safeguards against such a predicament. Why it was ever the responsibility of the judiciary to sign off on these undisputed decisions is unclear. The official solicitor is likely to appeal against this ruling, but in the meantime, it is refreshing to see that the court of protection may be making moves, however hesitant, towards accepting that medical expertise and patient autonomy should be afforded the utmost respect under such intimate and sensitive circumstances.