Despite the fact that it will come to us all, it is hard to talk about dying. Dying is intensely personal. But – like many other matters of importance - in this case the personal is political. We need to talk about it. Not just between ourselves, our loved ones and our doctors, but at a national level in our Parliament. We need to talk about what rights dying people need to have at the end of their lives.
When we talk about rights we know that strong pressure for change is met by strong resistance. Think of the abolition of slavery, votes for women, the legalisation of abortion, the decriminalisation of homosexuality and more recently the repeal of Section 28. It has sometimes taken decades for these issues to be resolved. Many of them share a common theme – the extension of liberty and choice, and rejection of the right of the state or church to make decisions on an individual’s behalf. Assisted Dying follows suit - it is the most socially progressive issue of our time.
Scotland is not the only country grappling with the issue, but current overseas trends indicate that our Parliament will soon find itself on the back foot of a growing movement of greater choice and control at the end of life. Dignity in Dying Scotland is calling for terminally ill, mentally competent adults to have the choice of assisted dying, so that dying people do not have to suffer against their wishes.
In the USA, states such as Oregon, Washington and California allow their citizens the right to die with dignity. Canada enacted legislation last year. On the same day Donald Trump secured the US Presidency, Colorado became the sixth state to opt for choice at the end of life. The evidence from these jurisdictions that have changed the law is that a small number of dying people would have an assisted death, but a huge number would take great comfort from knowing the option was there for them.
In Scotland our current law is broken and needs to be fixed. At the moment, one person every eight days is travelling from the UK to Switzerland in order to end their life. Those that can’t afford it, are too unwell to travel or don’t want to have to die early when they are still able to make the journey, end their own lives in this country, often alone and in traumatic circumstances. Assisted dying is already going on right now, unchecked and unregulated. A transparent, safeguarded law would give more protection to vulnerable people as well as provide relief to needless suffering.
We have witnessed an unfinished revolution in our healthcare. Person-centred care has been perhaps the biggest driving force in health and social care in the past two decades. It is based on core human rights principles such as dignity, fairness, equality, respect and autonomy - principles that protect our freedoms to control our own lives. Dignity in Dying’s sister charity, Compassion in Dying, is supporting more and more people to exercise their rights under the current law. We know that this results in better care outcomes and reduced emergency hospital admissions for dying people. But end-of-life care cannot be truly person-centred until assisted dying is legalised. Why should these principles be taken away at a time when they would be valued most?
We have also, rightly, seen expansion in palliative care. I strongly agree that everyone who needs it should be able to access high quality, person-centred palliative care, but know that even when in receipt of good palliative care, dying people sometimes suffer unbearably against their wishes. Assisted dying would not and should not take the place of good end of life care but would exist alongside it as part of a package of patient rights. Like palliative care, assisted dying helps patients and their loved ones focus on quality of life by easing their greatest fear: that they will experience unbearable suffering during the last months, weeks, or days of life. It is not only about how a person dies, it’s about how they live during the last stage of a terminal illness.
A person who is terminally ill has no choice over whether or not they die. They should have a choice over how they die. When death is inevitable, suffering should not be. Everyone should be afforded the right, when dying, to die well.
With a clear majority of the public supporting the choice of assisted dying for terminally ill adults, it is clear that one day we will realise our aim. Until then many people will continue to suffer needlessly and many more will watch their beloved family members and friends die in intolerable ways.
In Scotland we need to take action now to ensure that our compassionate values, our policies on person-centred care and belief in human rights are realised. We need to speak up for dying people. This issue will not go away; pressure to change the law will only grow. Now is the time for Scotland to lead the UK on this.
Ally Thomson is the Director Scotland for Dignity in Dying and Compassion in Dying
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