“The law badly needs to be changed to allow choice at the end of life and immunity to those who assist in this regard. It is surely time that the Government faced up to this very important issue.”
This was the message from a debate last week in the House of Lords , in the words of the Earl of Glasgow. Lord Glasgow, who introduced the debate, told Peers that the debate was “about choice, freely taken”.
He explained that the current situation was untenable. Dying people, he said, were travelling to Switzerland “to die prematurely” due to the current law. He also acknowledged the need for strict safeguards that would protect the vulnerable from coercion, or the feeling of burden.
“Of course there must be very robust and foolproof safeguards, and that is exactly what is to be found in [Lord Falconer’s Assisted Dying Bill ], which will be coming to this House some time early next year.
“Yet, in spite of all the assurances on safeguards, we know that there is still going to be strong opposition to that Bill—not, I am pleased to say, as strong as it was [around Lord Joffe’s Assisted Dying for the Terminally Ill Bill], but it will still be formidable. To me, the legalisation of assisted dying in specific and clearly identifiable circumstances seems so sensible and humane that I am finding it more and more difficult to understand why some groups and individuals are so adamantly opposed to it.”
Hearing some of the arguments against assisted dying certainly didn’t help me understand those reasons.
Existing legal powers
Baroness Hollins, a steadfast opponent of assisted dying and a former President of the British Medical Association, was the first to respond. She argued that the lack of uptake for existing legal rights under the Mental Capacity Act meant that there was no need to legislate for assisted dying. I don’t think many would disagree with the first part of her argument; in fact as a member of the House of Lords Committee that is currently scrutinising the Act’s implementation, she will know better than most the kinds of challenges people face when they complete an Advance Decision or Lasting Power of Attorney. Our partner charity Compassion in Dying does excellent work helping people navigate their way through the official forms, and know just how hard it can be.
But it doesn’t follow that there would be no call for the legalisation of assisted dying if there were greater uptake of Advance Decisions and Lasting Powers of Attorney. We need a range of patient choices at the end of life, not just the ones that we would want for ourselves. I find it difficult to personally reconcile the idea that we as a society allow a patient to refuse life-sustaining treatment in some circumstances, all with the agreement and complicity of doctors, yet politicians have so far refused to countenance an assisted dying law.
Baroness O’Cathain, another opponent of assisted dying, argued that this ethical distinction was necessary because it “takes clinical practice into a place where it has no business to be, and could signify the breakdown of that trust [between doctors and patients]”.
I don’t agree – surely it’s the cornerstone of the doctor-patient relationship to be candid about a patient’s preferences? Furthermore, we have seen from countries that have legalised assisted dying that this simply is not the case. A study by Professor Clive Seale in 2006 found that doctors in countries where assisted dying is legal are more likely to have a discussion on the full range of end-of-life choices, including palliative care.
The Oregon experience shows us that for dying people, simply discussing assisted dying alongside palliative care options (as is required under Lord Falconer’s Bill) gives sufficient reassurance. But the fear of prosecution under the current law in England and Wales means that doctors can be reticent to discuss assisted dying in any context with their patients. I fail to see how shutting down conversations for patients in desperate need can engender patient trust.
In the “AM” case , the Court of Appeal this year judged that there needs to be greater clarity given to healthcare professionals in how they discuss assisted dying with their patients. There will be a further debate on this subject next week at the Supreme Court, and I hope the Court agrees that there needs to be more clarity.
Disabled people and the “duty to die”
Baroness Grey-Thompson repeated arguments she had made earlier in the year against assisted dying. To begin with, she said that the “right to die” can become a “duty to die”. This is simply not the case. Safeguards to prevent coercion help to prevent this, and it’s never been shown to be the case in jurisdictions that permit assisted dying.
Take Oregon, for example. Only around 1 or 2 per cent of those who discuss assisted dying with their doctors actually end up taking life-ending medication. Around 40 per cent of those who receive lethal medication actually self-administer; those people die naturally, but with the reassurance that, if their suffering becomes too great, they may decide to end their life.
As Professor Raymond Tallis said at a debate at UCL last month , assisted dying is not a direct train with only one destination. In Lord Falconer’s Assisted Dying Bill are numerous points at which a patient can withdraw their request for an assisted death, or where a doctor can withdraw their approval. It also provides several “cooling-off” periods for dying people to seriously reconsider their options.
The “slippery slope”
Baroness Grey-Thompson went on to say that people with disabilities may feel pressured into ending their lives under an assisted suicide law. Whatever your views on this argument (and neither I, nor Lord Falconer, nor Dignity in Dying, agree with assisted suicide), it simply shouldn’t apply in a debate about people who are terminally ill. It harkens back to the oft-repeated “slippery slope” – if we legislate for assisted dying, we will eventually end up with uncontrollable euthanasia. It’s an argument, but it is not an argument based on evidence.
In Oregon, an assisted dying law has been available for 15 years now. The law has huge public support , surviving attempts at repeal, and the criteria have never been extended beyond the terminally ill. Nor have there been any real calls to extend it. The countries that have legalised assisted suicide for those who are not terminally ill have explicitly legislated on that basis.
So I, like the majority of people with disabilities , support assisted dying for the terminally ill. If someone is opposed to assisted suicide for those who aren’t terminally ill, then they should oppose assisted suicide. But to oppose assisted dying on that basis suggests to me that terminally ill people must suffer against their wishes in order to protect others. It also ignores the existing safeguards in Lord Falconer’s Bill that would ensure that people with disabilities but who aren’t terminally ill would not be eligible for an assisted death.
The sanctity of life
In the debate, we were lucky enough to hear from two Bishops on their opposition to assisted dying. The Lord Bishop of Derby said life was a “gift” and talked of the interconnectedness of individuals in society, warning against commoditising human life. He also pointed to Jesus’ experience in the cross, where he committed his spirit to God in what the Bishop called “a transition within a life that flows into eternity”. But as Baroness Flather responded:
…life is a gift only when it feels like a gift. It stops being a gift when you are suffering and do not wish to go on. As a man of faith, he cannot possibility advocate that we should stop life at any point, but we cannot all follow the example of the Son of God.
The Lord Bishop of Wakefield spoke about the “impossible choice” that might be faced by those who were dying. He argued that some might lack the “inner strength” to decide against assisted dying, even where they did not want it. It’s a powerful argument, and one that I share concerns over. Huge inner strength is needed to fight a terminal illness.
But, as with the other concerns raised in the debate, the answer is not to refuse assisted dying legislation. The answer is to ensure that any assisted dying legislation sufficiently safeguards against people feeling pressured (whether externally or internally) into an assisted death. Lord Falconer’s Assisted Dying Bill does this by ensuring that two doctors are satisfied that a person has a “clear and settled intention to die” and by ensuring that dying people are told of all of their palliative care options. As discussed above, there would be plenty of opportunity for someone to change their mind, or for a doctor to raise concerns about a person’s motivations.
Not to provide assisted dying, as the Bishop would prefer, protects the current “impossible choice”. Does a dying person suffer against their wishes until nature takes it course? Or do they spend hundreds or thousands of pounds travelling to Switzerland to end their life? Do they enlist the support of a loved one, who will face investigation by the police when they return? Or do they ask that loved one to help them take their own life? And for the loved one, there’s another set of “impossible choices” to contend with – let a dying person suffer against their wishes, or break the law and hope or pray that the authorities do not punish you.
The arguments for
Having spent many hundreds of words writing about the arguments against, it seems strange for a campaigner not to give the argument for changing the law. But the argument in favour is almost self-evident: This is a choice for the individual dying person. It is not for someone who has strong personal convictions (whether they are due to their faith or not) to decide whether a dying person should have that right.
And since I have neglected to mention the majority of Peers who spoke in favour of a change in the law, perhaps their words would be more suitable.
Several speakers referred to the shortcomings of the existing law, where compassionate assistance offered by a loved one is unlikely to end in prosecution, due to the discretion of the Director of Public Prosecutions:
Decisions as to what is right and what is wrong at the end of life cannot be left to an unelected official such as the DPP… It is our duty as Parliamentarians to take responsibility for those decisions, not to pass off that responsibility to others.
…speaking as a former police officer, even if the DPP’s current guidelines make prosecution unlikely, they do not make the search, questioning and possible arrest of the people involved unnecessary. At the moment that has to happen. However good the police are, someone is left not only with a death but with precious objects removed from their house, and with the decision hanging over them about whether to prosecute.
Lord Blair of Boughton
Others reiterated that this was about putting the patient first, respecting their choice rather than our own beliefs:
For me, it is a moral issue and a matter of simple humanity that we should respect the diversity of patients’ wishes in the last months of life, just as we are beholden by law to respect their wishes at other times.
We should therefore allow people to stand by the phrase “nothing about us without us” and listen to what they want. The majority of people—80% in this country—want to have control over when they die. We must not ignore that.
Some Peers spoke of the inevitability of change, given the increasing numbers of jurisdictions who have legalised assistance to die:
I believe that, with the safeguards proposed, we have a duty to follow these enlightened democracies and give a lead to others without delay.
We know that the Oregon system works well—so well in fact that, as has already been said, the states of Washington, Montana and Vermont have subsequently legalised assisted dying.
The Earl of Arran
In my experience, it’s rare to find 23 speakers taking part in a short debate in the Moses Room, far from the TV cameras in the main Chamber.
What’s even rarer is when almost as many again turn up to listen to the debate – I counted a total of 40 who attended. The majority of those who spoke were supportive of a change in the law, something that the Minister had to concede in his response.
What last week’s debate shows is that we’re in for a busy 2014 with Lord Falconer’s Assisted Dying Bill hopefully receiving a full debate. We at Dignity in Dying will be doing all we can to support Lord Falconer’s Bill at Second Reading and beyond.
From my own perspective, until I hear an opponent satisfactorily explain why a dying person should have to suffer against their wishes, I will continue to campaign for a change in the law on assisted dying.