None of us likes to think about our own mortality or that of our loved ones. But one thing is certain: all of us would want to ensure that no one suffers against their wishes at the end of life.
This Friday members of the House of Lords will debate the Assisted Dying Bill. Let me say why I think it is so important that we give terminally ill people the choice to end their suffering within a safeguarded framework.
Since I started investigating the failings of the current law I have heard harrowing stories of how people had either tried to take matters in to their own hands and where something had gone wrong or family members had agreed to help a loved one but lived in fear of a knock on the door from the police.
I’ve spent a lot of time looking at how other countries tackle this challenge and have proposed legislation, which has received cross-party support, based on the model in operation in the United States.
The state of Oregon’s Death with Dignity Act has been in place for over 16 years and has enabled a small but significant number of people who were terminally ill to request the option of an assisted death from their doctor. There has been no evidence of abuse since its inception.
In practice only a very small number of patients have an assisted death - fewer than 80 in total in 2013 out of the annual 30,000 deaths in Oregon. Around 40% of dying people who meet the strict safeguards to obtain life-ending medication never use them, simply taking comfort from having the option. The law has worked well and safely in Oregon which is why other states such as Washington and Vermont have more recently introduced assisted dying laws.
Critics of the Bill however prefer to cite the voluntary euthanasia laws of Belgium and the Netherlands opened a ‘slippery slope’. That is not the case. Both countries deliberately and from the beginning created laws that allowed both dying and non-dying people to be directly helped to die based on a subjective analysis of suffering.
That is not the model proposed by my Bill. Whatever the merits or otherwise of the Belgian and Dutch laws, they provide no evidence of a slippery slope. More accurately, they confirm that the law you enact is the law you get, which is why it is so important we get it right from the outset.
The principle of the Assisted Dying Bill is that those who are terminally ill should have choice and control over their end-of-life care. As a result, the Bill would not lead to more deaths, but rather it would lead to less suffering amongst a small, but nevertheless important, number of people with terminal illness.
Under this Bill people who are not dying, for instance disabled or older people who do not have a terminal illness, would not be eligible for an assisted death.
Similarly, the Bill would not legalise voluntary euthanasia, where a doctor directly administers life-ending medication. The Bill is clear that the final act in an assisted death must be taken by a patient who has mental capacity both at the time of the request and at the time of their death.
There is overwhelming public support for a change in the law, with four out of five voters supporting assisted dying. Parliament needs to take account of the views of a clear majority of the public who support change.
Some people who are facing the end of their lives now are seeking an answer through the courts. In response the Supreme Court recently put Parliament on notice to review and reform the law, or face the consequence of the courts doing it for them. Parliament and legislators cannot shirk their responsibility for resolving this important issue. Accepting the status quo is to accept illegal, unsafe amateur assisted dying. Only Parliament can provide a robust, fair and compassionate law that can be applied with rigour and force.
Others are forced to attempt to end their lives without medical support, or to travel abroad for help to die. The status quo also ignores the fact that in practice some doctors work outside of the law - illegal and unregulated voluntary euthanasia (direct medical assistance to die) happens now, accounting for approximately 1,000 of the 500,000 deaths per year.
The current law fails the public safety test: it does not deter illegal assistance and investigations take place after a death has occurred which is when it is clearly too late to detect and prevent coercion.
The Assisted Dying Bill provides a legal framework to something that is already happening in an unregulated way and thereby gives guidance and protection to patients and healthcare professionals.
It will ensure that terminally ill adults who have an assisted death do so having met clear safeguards and having explored all their alternatives, rather than as at present, in secret, when checks are only made after someone dies.
It’s time we bring clarity to the current law and ensure that fewer dying adults - and their families - face unnecessary suffering at the end of their lives.