A right to die?

Last week at the National Assembly I initiated a debate on support for the principles of the right to die as set out in Lord Falconer’s Assisted Dying Bill. The Assembly rejected the proposal by 21 votes to 12, but the large numbers of abstentions – 20 – reflects I believe a real uncertainty about how to address this issue in an ageing, medicalised society and I am sure the proposal will return to the Assembly at some stage.

It is important at the outset to emphasise that the Bill deals with assisted dying for those facing certain death only: it is not voluntary euthanasia. But the debate threw up important issues, and showed how well the Assembly can work across parties on occasions.

I believe that good law should empower the individual to control their lives as much as possible. Towards the end of life, we need to allow and support people to be in as much control of their exit as they have been over the rest of their lives.

Already in the UK some 25-30 people a year choose to travel abroad for assisted death. Assistance for these people to achieve their wish has been effectively decriminalised by DPP guidelines. Yet do the same in Wales as you would for your partner in, say, a Dignitas clinic in Switzerland and you run the risk of prosecution.

The dilemmas faced by families and individuals can be overwhelming. People have gone to court to ask for permission for their doctor or relatives to help them die peacefully. This permission has been refused. The courts correctly judging that it is for parliament to decide. Yet we shy away from a full debate about the conflicts that our increasing longevity and a technically advanced, medical model of care are throwing up.

This was put succinctly by Atul Gawande in the third of his enlightening Reith lectures this year: We’ve had I think an about 50 year experiment with medicalising mortality, with casting it as just another problem for us to treat like any other, and I think that experiment is failing. But we have an alternative emerging. It’s one where we learn and elicit what matters most to people in their lives besides just surviving

Prof Gawande points to evidence of how a patient’s control over his or her treatment can lead to better outcomes in alleviating suffering. The most high profile recent example of such choices was perhaps Lynda Bellingham.

He reminds us that 80 per cent of our population now will die in hospitals or institutions – a remarkable change from the 1950s when the majority of people died in their homes.

Some countries and states have tried to reconcile these competing demands – to save life but to allow the individual the right to end their life when unbearable – with changes in the law. Oregon is the template for Lord Falconer’s current Bill. And in fact, only a very small number of patients go on to have an assisted death in that state – fewer than 80 in total in 2013 out of the annual 30,000 deaths. Around 40% of dying people who meet the strict safeguards to obtain life-ending medication never use it, simply taking comfort from having the option. The law has worked well and safely there.

Now many may say this is precisely the task of good palliative care and that is undoubtedly the case for the vast majority facing terminal illness. But it cannot alleviate suffering for everyone nor give the choice that some desire.

Legal assisted dying complements palliative care; encourages open discussions around end-of-life care; and increases investment in end-of-life-care and uptake of training by healthcare professionals. Research by the Economist Intelligence Unit which ranked end-of-life care across the world found that debate and legislation on assisted dying was a catalyst for improved end-of-life care services. This is not an either/or situation.

The truth is that the current law is inadequate. It does not deter covert,  illegal assistance and places both professionals and friends and family members of dying people in a terrible position.

Surveys between 2010 and 2014 have consistently found between 75 and 80% of adults would support assisted dying for terminally ill adults.

As Atul Gawande put it in his Reith lecture: When faced with unavoidably unbearable suffering, it is heartless to think we might not offer the option of assisted dying

Though I was disappointed that the Assembly did not agree with the cross party motion regarding assisted dying, it was good to hear honest debate and some of that was reflected in the media. But it was both disturbing and fascinating to see that BBC Wales seems more interested in whether someone had their hand on their hips in the Senedd than this hugely important ethical topic.

If many people feel the Assembly is boring and irrelevant it may partly be because many of our citizens are excluded by a media obsessed with personalities, and political reporting that has sold out to that style of broadcasting.