Dying for death – the legal right to die

Following a recent personal experience is sometimes not the best time to address life-changing legal issues that will affect others. During the recent protracted death of my 91 year old mother after a severe stroke, I found myself and my family precipitated onto the Liverpool Care Pathway. Our involvement was to watch, bedside, whilst she struggled towards a delayed death, cared for by kind and competent medical staff, but hindered by an unkind process.

The Liverpool Care Pathway is to be reviewed. Is it sufficiently clear? Does it inform relatives that the process of dying on the pathway may be prolonged and challenging? Is it clear regarding the issue of food and hydration during dying? How can we ensure that proper information has been shared with a patient’s family, and consents have been freely given?

The Pathway, developed during the late 1990s in conjunction with the Marie Curie Palliative Care Institute at the Royal Liverpool University Hospital, was to allow people with a terminal illness to die with dignity. Then, and perhaps now, this approach is counter-intuitive for a medical profession dedicated to cures and life.  Entry to the Pathway is the recognition that death is both inevitable and imminent. This final furlong involves the end of active, life-sustaining treatment, and the acknowledgement that death is an objective.

The Pathway may be simple if the patient is unable to take nutrition and liquids without painful medical intervention. An unconscious patient is expected to slip further from life, absent life support. But what if the patient really needs assistance with dying?

Tony Nicklinson suffered from ‘locked-in syndrome’. His unsuccessful High Court challenge to the right to an assisted death was taken over after his death in 2012 by the paralysed Paul Lamb, and resulted in the constitutionally correct, but unkind ducking of the issue by the Court of Appeal. The court held that denying assistance towards death constituted a proportionate interference with Article 8 rights to self-determination. Lord Judge considered that any change to the law was a matter for parliament to legislate.  The associated ‘Martin’ appeal was however allowed. Here, the Director of Public Prosecutions was required to provide clearer guidance on prosecution policy of those, including medical staff, who may accompany a patient to Switzerland for the purpose of assisted dying.

The matter could not end there. The case now awaits judgment from the Supreme Court. Paul Lamb has continued his legal battle for the right to an assisted death, whilst Keir Starmer, the former Director of Public Prosecutions asked for further guidance from the Supreme Court on prosecution policy.

Examining the current guidance, it is significant that the ‘full code test’ which has to be met before a prosecution is brought, comprises not just an evidential test, but a public interest assessment. Herein is the dichotomy – between individual rights (or wishes), and public interest considerations.

Baroness Mary Warnock (moral philosopher and thinker) and Elisabeth MacDonald (cancer specialist and expert on medical law) captured these issues comprehensively and sensitively in ‘Easeful Death- Is there a case for Assisted Dying‘, published by Oxford University Press in 2008. They summarise the debate (as did the House of Lords Select Committee) as representing two conflicting principles – ‘the sanctity of human life’ and ‘the principle of autonomy’. In 1998, the debate centred around the wishes of motor neurone disease sufferer Diane Pretty to die with dignity. Lord Joffe’s bill, the last before Parliament, was rejected in 2006. It is a sad commentary on the state of English law that, whilst parts of the European community have developed a cogent end-of-life policy, the UK still flounders with indecision.

The BBC script writers of Coronation Street revived the debate this year with the death of Hayley Cropper, taking her own life rather than waiting for a painful death. Following the screening, polls recorded that 80% of the British public support the idea of medical assistance to die with dignity. Interestingly, 71% of those expressing religious beliefs also support a change in the law.

Should the wishes of mentally competent adults be treated with respect when it comes to the fate of their own life and body? Should those whose medical or physical condition is so severe that they are unable to help themselves, be assisted on the pathway to dying? Are sufficient safeguards available to prevent unlawful death? Should the compassion card trump the legal prohibition?

The latest Assisted Dying Bill, brought this time by Lord Falconer and modelled on the law in Oregon, USA, is to ‘enable competent adults who are terminally ill to be provided at their request with specified assistance to end their own life; and for connected purposes’. A free vote is to be allowed, although currently 30% of MPs support the Bill and 40% are yet undecided. The Bill’s scope is limited, compared with Switzerland (where assisted suicide has been lawful since the 1940’s), Holland and Belgium.

Whilst this Bill may not have helped my mother towards a peaceful death -with public support – it is certainly a step on the way.