Terminally ill people and families of those who suffered as they died have come together to urge MSPs to vote for Liam McArthur MSP’s Assisted Dying for Terminally Ill Adults Bill in the Scottish Parliament.
The letter, signed by 54 people with lived experience across Scotland, tells of the fear of facing a painful and protracted death without the option of an assisted death, and the bleak options with which they are left, including ending their own lives behind closed doors.
Those who have witnessed a loved one suffer as they die highlight extreme suffering that is beyond the reach of any palliative care, leaving those behind with harrowing memories.
The lead signatory of the letter, Norma Rivers, 73, from Ayr, has terminal myeloma – a rare form of blood cancer. Having witnessed her father’s traumatic death from cancer, she knows she doesn’t want to suffer as she dies.
Norma said: “Having no choice can force people into things they don’t want to do. I want to live as long as possible, but I am running out of treatment options.
“If the Bill isn’t passed before I die, I will take matters into my own hands. I have just been living in fear, trying to work out which of my drugs I need and how much, and scared I’ll end up worse if it doesn’t work.
“All I ask if for a peaceful ending surrounded by my family.”
FULL TEXT OF THE LETTER
Dear MSPs,
We have come together as terminally ill people and families of those who suffered as they died, to ask you to vote for the Assisted Dying for Terminally Ill Adults Bill at Stage 3.
We are the real people at the heart of this Bill. Some of us face a terminal diagnosis ourselves, while others have witnessed a loved one suffer unbearably at the end of life. When you voted for the Bill at Stage 1, we know that you did so with our stories in your minds, and we ask you to please do the same at Stage 3. The Stage 1 vote brought such relief and hope to us, that no one else might have to suffer as we have.
For those of us with a terminal diagnosis, denying us choice will not stop us seeking it out. Without assisted dying, we are coerced into suffering against our wishes. Many of us have already seen a loved one suffer and know what is coming. Like the vast majority of Scots, we are priced out of travelling to Switzerland.
We do not want to die alone in a foreign country, but could not risk our loved ones facing prosecution when they return without us. The only other option is to end our own lives behind closed doors. This means endless sleepless nights calculating the combination and amounts of drugs we need and the intense fear that none of it will work and we will end up in a worse position than before.
Watching a loved one suffer has put us in impossible situations too. The agony we have witnessed, even with the very best palliative and hospice staff doing everything they can, is unimaginable.
We have been left powerless, hands tied by the law, as our closest family begged us to help them; to take them to Switzerland when we know they are too far gone, or o scour the dark web for pills, not knowing what’s in them or where they come from.
The law abandoned us when we needed it most, leaving us to scramble around in the dark with no process, no safeguards, and no compassion. We are only left with harrowing memories, guilt that we were powerless to help, and our own health conditions caused by the stress.
Assisted dying would be a lifeline. It would let us live the rest of our lives in peace, making precious final memories with our loved ones, without the constant dread of how our lives will end. It’s too late for our loved ones who have died, but we have the opportunity to make things ight so no one has to suffer as they did.
This issue is not going away. Voting against this Bill will not stop us from dying, but will deny us a lifeline to a safe, peaceful death surrounded by our loved ones.
You have before you an opportunity to shape what an assisted dying law in Scotland looks like.
A law that is safe, compassionate, and provides choice to those who so desperately need it. Without it, our options are bleak. The most dangerous thing you can do for us is nothing.
Please give us hope by voting for the Assisted Dying Bill.
Responding to the First Minister’s comments on Liam McArthur MSP’s Assisted Dying for Terminally Ill Adults (Scotland) Bill, Ally Thomson, Director of Dignity in Dying Scotland said: “I am disappointed that the First Minister will not be voting to progress Liam McArthur’s Bill.
“I know, and appreciate that he took the time to speak with dying people who are desperate for this choice, and to families who had watched someone suffer a painful death. I believe him when he says it was not an easy decision to reach.
“The sad truth is that if MSPs were to vote against extending safe and compassionate choice to dying Scots many more terminally ill people will suffer and the harm created by the blanket ban on assisted dying will persist.
“Doing nothing is the worst thing Parliament can do here. With people going to Switzerland, stopping eating and drinking and taking matters into their own hands its clear that assisted dying is happening in Scotland right now – but in unsafe, unregulated and unkind ways.
“I value the First Ministers comments that his vote is on a personal basis, and he does not seek to influence others decision on this.
“I am optimistic that Tuesday’s vote will bring a breakthrough for terminally ill Scots who are desperate for more choice. The mood of the Parliament seems to have caught up with the views of the vast majority of Scottish people – that it is time for a more compassionate and safe law.”
The Assisted Dying for Terminally Ill Adults (Scotland) Bill is a Member’s Bill introduced in the Scottish Parliament by Liam McArthur MSP on 27 March 2024.
The Committee has highlighted a number of areas which it says will require further consideration at Stage 2, should MSPs vote to approve the Bill at Stage 1.
Concerning those rights set out in the European Convention of Human Rights that may be affected by the Bill, the Committee notes that individual MSPs will need to consider a number of ‘important factors’ before deciding how to vote at Stage 1.
These include the extent to which the Bill strikes an appropriate balance between providing a right for terminally ill adults to access assisted dying and the requirement to protect vulnerable groups; and the likelihood that the Bill may be subject to a human rights based legal challenge that could result in eligibility for assisted dying being extended over time.
Should the Bill progress to Stage 2, the Committee says that creating an independent oversight mechanism or assigning responsibility to the Chief Medical Officer for monitoring its implementation could help to strengthen safeguards in the Bill and its compliance with human rights requirements.
The Committee concludes that the requirements that individuals must be at least 16 years of age and must have been ordinarily resident in Scotland for at least 12 months prior to making a request for assisted dying may require ‘further clarification’ should the Bill progress to Stage 2.
The Committee acknowledges that the definition of terminal illness in the Bill does not include a life expectancy timescale and that this would mean widening eligibility for assisted dying to include individuals who, although living with an illness or condition that is progressive and untreatable, may not be approaching death for a considerable period of time.
However, it also recognises that life expectancy can be very difficult to predict and that determining whether an individual does or does not meet the eligibility criterion of being terminally ill is ultimately better left to clinical judgement.
The Committee has also concluded that the issue of conscientious objection for healthcare workers will require further attention should the Bill progress to Stage 2, to ensure the relevant provisions of the Bill provide an appropriate level of legal clarity and certainty for all parties involved in the assisted dying process.
Concerns from those opposed to the Bill around the issue of coercion are highlighted in the report and the Committee welcomes Liam McArthur’s commitment to look at reviewing and updating guidance on coercion should the Bill be approved at Stage 1. The Committee emphasises the importance of comprehensive guidance to ensure health practitioners can assess coercion effectively and to allow the related offence created by the Bill to be appropriately policed.
The Committee’s report notes a number of competence-related issues involved with practical implementation of the Bill, were it to become law, which have also been recognised by Mr McArthur. Should the Bill progress beyond Stage 1, the Committee welcomes the Scottish Government’s commitment to open dialogue with the UK Government in order to resolve these matters, to enable the Bill to take full legal effect.
Speaking on publication of the report, Clare Haughey MSP, Convener of the Health, Social Care and Sport Committee, said: “Our Committee understands the strength of feeling about this Bill and that assisted dying is a complex and sensitive issue.
“We have considered this Bill and the issues related to it in great detail, hearing views from a variety of individuals and organisations, and from those both for and against assisted dying. Ultimately, our Committee believes the Stage 1 vote is a matter of conscience for each individual MSP and as a result has made no overall recommendation as to how they should vote on the general principles of the Bill.
“However, should the Bill progress to Stage 2, we have highlighted a number of areas which we feel will require further consideration before the Bill can become law. These include issues around human rights, coercion, eligibility criteria, provision of assistance, self-administration and conscientious objection for healthcare workers.
“We also recognise that there are particular complexities associated with those aspects of the Bill which extend beyond the limits of the powers currently devolved to the Scottish Parliament. If the Parliament approves the Bill at Stage 1, there will need to be an open and constructive dialogue between the Scottish and UK Governments to resolve these issues and to allow the Bill to take full legal effect.
The Convener added: “I’d like to thank all of the individuals and organisations who provided evidence to our Committee.
“Their considered and detailed responses have aided our scrutiny of this Bill and we hope our report can help inform Members as they decide whether to vote for or against the proposals at Stage 1.”
Other key findings in the report:
The Committee highlights the substantial evidence it has received on the importance of palliative care and expresses its hope that, irrespective of the outcome, the current debate will provide a catalyst for further improvements to be made to the quality and availability of palliative care services in Scotland.
The Committee calls for further consideration of issues around capacity should the Bill reach Stage 2. This includes the resource implications for medical services assessing the capacity of those requesting assisted dying; and ensuring the capacity of people with a mental disorder is assessed in a way that is fair and non-discriminatory, while also giving suitable protection for vulnerable individuals.
The Committee highlights concerns over the risk of “doctor shopping”, where an individual’s initial request for an assisted death is declined and they seek another medical practitioner’s assessment. Should the Bill progress to Stage 2, the Committee say it may be beneficial to explore further amendments to guard against “doctor shopping”, including creation of a central register of psychiatrists or an independent body or ethics committee to oversee, monitor and review medical practitioners’ decisions.
The Committee recognises the intention that, should the Bill become law, assisted dying would be delivered as an integrated part of existing healthcare services rather than a stand-alone service. At the same time, it emphasises the importance of monitoring the impact of the Bill on existing services. It also suggests that certain aspects of assisted dying might be better delivered on a stand-alone basis, in particular to ensure consistent access across the country.
The Committee also emphasises the need for a combination of further amendments at Stage 2 and detailed guidance on self-administration and provision of assistance as part of the assisted dying process to ensure absolute clarity and appropriate protection for all parties involved, should the Bill become law.
The Committee notes Mr McArthur’s willingness to explore further the possibility of creating an “opt-in” model of participation in assisted dying for health practitioners and says this warrants further debate should the Bill progress to Stage 2.
The Committee notes the potential inclusion of a sunset clause (meaning the legislation could not remain in force beyond a defined period without a further vote in the Parliament) may be the subject of further discussion, if the Bill progresses to Stage 2.
Responding to the report by the Scottish Parliament’s Health, Social Care and Sport Committee on Liam McArthur MSP’s Assisted Dying for Terminally Ill Adults (Scotland) Bill, Ally Thomson, Director of Dignity in Dying Scotland said: “I welcome the Committee’s report and the fact that MSPs will have a free vote on extending compassionate choice to dying people who need it most in the coming weeks. For too long the status quo – a blanket ban on assisted dying – has caused dying Scots anguish and desperation.
“In forcing people to travel abroad, stop eating and drinking or take matters into their own hands in it is lacking in both compassion and safety. The most dangerous thing Parliament could do here is nothing.
“I am pleased that the committee has noted from evidence provided that assisted dying can comfortably sit alongside palliative care and that where an assisted dying law based on terminal illness and mental capacity alone, such as the one proposed for Scotland, has been introduced there has never been a loosening of the eligibility criteria.
“I’ve spoken to countless terminally ill people who are desperate for the peace of mind that this Bill would bring, and to so many who have watched someone they love endure a terrible death and don’t wish anyone else to suffer in a similar way.
“I know that many will wish that these experiences were covered more fully in the report. The upcoming vote gives them all hope that needless suffering can be consigned to the past.
“As MSPs come to their own decision’s I urge them to listen to the experiences of their constituents, reflect on the evidence from countries like Australia and New Zealand and vote for more compassion, choice and safety.”
