Proposed Assisted Dying for Terminally Ill Adults (Scotland) Bill

Everyone should enjoy the right to personal freedom to control their own body and life, so long as it doesn’t unfairly impact on others. I believe this right should extend to the end of our lives and not end at a terminal diagnosis. The current law around end of life care unfairly limits the support and choices that can be given to those who face a painful death.

My assisted dying Bill proposal - which is supported by members of all the political parties represented in Holyrood - would put compassion and choice at the heart of how we support those who are terminally ill. The right to access an assisted death is a debate about personal control and choice. It is about who should make that choice and who should have power and control over decisions about a person's own body. It is not about proposing new laws that put vulnerable people at risk. Nor is it a way of making an assessment about the value of a life that is not one’s own. The proposed bill would extend the autonomy that we have over our bodies, and that we expect at every other stage in our lives, to end of life care, including hastening our deaths if we feel that is appropriate.

This is a choice overwhelmingly supported by the public. Opinion polls have consistently shown that over three quarters of people in Scotland believe that assisted dying should be legalised. An even higher proportion believe that now is the time for this matter to be debated in the Scottish Parliament, with over eight in ten backing a debate in this parliamentary term. I have listened and learned from the three previous attempts made by parliamentary colleagues Jeremy Purves MSP, Margo MacDonald MSP and Patrick Harvie MSP to change law in this area. Informed by the debate and discussion generated by previous attempts to change the law, I am proposing something with enhanced safeguards and more limited in scope.

My proposal is to legislate to allow those who are terminally ill, and have clear mental capacity, to make decisions about their end of life care, within a system built on strong regulation and safeguards. To achieve this, and to ensure that we have the best bill that we possibly can, it is essential that we have input in the consultation process from as wide a cross section of people across Scotland as possible. My hope is that this process allows us to hear about the benefits but also the challenges of different aspects of such a proposal from those with a range of different experience, insights and expertise.

My consultation will ask for views on a potential three stage process. In stage one individuals seeking an assisted death will make a declaration approved by two separate doctors who will assess the terminal nature of the individual’s prognosis and their capacity to make such a decision. During the second stage of the process the focus would be on ensuring that the patient has fully understood all of the possible alternatives available to them and would include a discussion with the patient about the reasons why they are seeking an assisted death. After stage two there would be a reflection period and after this, if the medical staff involved were satisfied that the patient is a) terminally ill b) aware of all the other end of life care alternatives c) making the decision freely and for their own benefit, there would be a final discussion with the patient prior to their assisted death. At all stages of this process it is imperative for the patient’s voice and their wishes to be heard and taken fully into account.

I think when any of us consider the issue of end of life care the first people we need to consider are those at the heart of the matter – dying people. We need to listen to their experiences, their views and their choices. We need to listen to people like Kay Smith. Kay is a retired palliative care nurse from Scotland who has a terminal auto-immune disease. Kay knew the realities of what dying looked like – she had comforted and cared for thousands of dying patients.

As Kay said:

“When the diagnosis is terminal, instead of dying a horrible nasty death, I should be able to sedate myself and give myself some medication that will end my life quickly, peacefully and without added trauma for my family. I think at that stage it shouldn’t be for a doctor to decide, or anyone else other than the individual involved. I will only be cutting my life short by two or three days, maybe a week, and it will avoid so much agony and heartbreak – that choice should be available for every human being.”

I have been struck by the correspondence I have received both prior to the publication of my proposal and since then, of personal stories from those families who have witnessed a loved one suffer a prolonged bad death and their determination that no other family should have to watch a loved one suffer as they did. We know that 11 people in Scotland every week die a bad death, despite being a country with one of the best palliative care provisions in the entire world.

This is not an issue that can be simply ‘solved’ by providing more and greater access to palliative care. Of course every person should have the right to access palliative care and should not face barriers in doing so, and I support efforts to increase such support. But even those with the very best of care can face a painful death. Internationally we see that in other countries where assisted dying laws have been introduced, palliative care has not been set aside or defunded. On the contrary, in these states it is most likely that those requesting an assisted death are already being cared for in a palliative care setting - in the US around 90% of requests for an assisted death are individuals already receiving palliative care. The request for an assisted death is not because the individual cannot access palliative care. It is a matter of choice. In countries where assisted dying is legal, trust in doctors is higher than in other states - honest conversations can be had between patients and their doctor rather than the subject being considered taboo or off-limits.

It is quite right that we allow people to make choices about their healthcare throughout their lifetime and I believe that the end of their life should be treated no differently. Properly informed and fully supported, many people may consider an assisted death but ultimately decide against it. But the fundamental right is that it is the patient themselves who should be able to make that choice. I’ve been struck by many terminally ill people who have said that they want the reassurance that the option is available to them if their pain becomes too much; it gives them peace of mind and allows them to go on living, safe in the knowledge that a bad death does not await them.

I understand that for some, both outside and within our healthcare system, there are personal moral objections to an assisted dying option. My consultation will ask for views on the right for healthcare practitioners to conscientiously object to being involved in the process of an assisted death. However, as is the case in other areas of healthcare such as abortion, the patient's right to access such an option cannot be ethically blocked by a doctor with a different set of beliefs from the patient. This is a matter of conscience, and as such respect goes two ways. Respect for those who choose to be apart from the offer, and respect for those who choose to access it. In the consultation I will ask for input on how a conscientious objection to assisted dying might work in practice, and how we ensure an individual’s right to access legal assisted dying should my proposal become law.

Those who choose an assisted death in other jurisdictions have been shown to have a long-held philosophical belief that highly prizes their independence and personal bodily autonomy. It is erroneous to make the argument that one set of beliefs - that assisted dying is ‘wrong’ - should supersede another set of beliefs - that assisted dying can be an appropriate choice and should be legal. Especially when both sets of belief are just as coherent and strongly held. As a liberal and inclusive society, we should listen to both sets of beliefs and allow every individual to make the choice for themselves. It is not making an assumption about someone else's worth to make decisions about your own body, your own treatment and your own palliative care or assisted death.

One sad reality of our current legal framework around assisted dying is that there are terminally ill people from Scotland already accessing support to die in this way. But rather than being able to do so at home, comforted by friends and family, this choice is limited to those who are physically able and financially wealthy enough to travel to providers in Switzerland. The denial of the basic right to decide on care provision to those without money is something that I find extremely challenging. And the fact that many people must make the decision to access an assisted death before they are ready, but while they are physically able to travel, means that people are denied precious time with their loved ones. That we deny the same right to those without the physical capacity and financial means is surely a sign of collective failure.

Legal scholars have criticised the current ‘vacuum’ in legal guidance, statute and case law around this subject. The current law in Scotland regarding assisted dying has been described as having ‘an alarming lack of clarity’ and that it ‘should embarrass any legal system’. The introduction of legislation would create a properly regulated structure in which assisted dying would happen, and would assess people's motivations and intentions before death, ensuring that decisions were made for the right reasons. This would undoubtedly provide better protection for vulnerable people considering an assisted death than the policy and legal vacuum that currently exists.

Importantly this is not Scotland taking a great leap into the unknown. Over 400 million people worldwide live in jurisdictions where assisted dying is available to them. There are many examples around the world that Scotland should learn from and I hope that members of the Scottish Parliament will invite and listen to evidence from these other jurisdictions on how compassionate law on assisted dying can and does work to benefit dying people.

I am aware that the Scottish Government intends to launch a Citizens’ Assembly on the matter of assisted dying and think that this will be a useful exercise in further exploring public attitudes towards the issue. It will also allow for some discussion of the way in which the law might work, and I intend to take on board the informative findings of the assembly as part of the bill process. Meantime, I hope that anyone with an interest in this issue will take the opportunity to respond to the consultation when it is launched later this year.

I look forward to engaging with parliamentarians, the public and interested parties on this subject over the coming months and years. I believe that we can make a positive difference to the difficult choices that dying people face, offering greater compassion, dignity and choice.