Why are you concerned about assisted suicide becoming legal?
We don’t see any route which would guarantee the implementation of assisted suicide for individuals as being entirely voluntary. We think any liberalisation of the law could not be framed or drafted in a way that would ensure individuals would not be abused or influenced to commit suicide.
Additionally, we’re concerned that disabled people, and people who are seriously ill, could feel pressure (real or imagined) to request an early death. That’s particularly true if people are anxious about being a financial, emotional or physical burden on family, friends and the state.
We’re also worried that any change in the law could lead to a series of changes, with the law being relaxed further down the line. We have seen this in countries and states with established assisted suicide laws such as Belgium (which have now seen children successfully demanding assisted dying) and Oregon (which has seen an increase in the valid categories which allow a request for assisted dying, including ‘loneliness’).
And we’re worried this debate is tied to the value our society places on disabled people’s lives. Many of us do not have an average life expectancy or have been told that we are terminally ill. Some of us have had DNR decisions imposed on us whilst receiving medical treatment without our knowledge. Many of us don’t get the support we need because of the value (or lack of it) society places on us. If disabled people are given the proper support and resources, they can live extraordinary lives.
We want assistance to live, not assistance to die.
Many people are in favour of changing the law on assisted suicide. This includes disabled people, medical professionals and politicians. Why should we listen to you?
We recognise not everyone agrees with us. We also recognise this is a challenging and emotive subject. Some of our volunteers used to be in favour of the idea of assisted suicide because it appeared to promote individual choice and autonomy – principles that are important to us.
Around half a million people die in the UK each year, so it is an issue that touches all of us.
For most people, the idea of dying whilst in terrible pain or having breathing difficulties, for example, is very frightening. Current medical practice, and legislation, deal with most of these issues.
A change in the law would have a limited impact, benefitting a relatively small group of people.
Many organisations, including medical professional bodies, do not want to see the law changed because of concerns about the impact on disabled people. No disability charities support a change in the law. The same is true of most palliative care specialists and those working in geriatric medicine, who belong to the BMA.
A change in the law would come with safeguards to protect people from manipulation. Doesn’t that solve the problem?
We’re not confident any safeguards will be robust enough.
Concluding which people are terminally ill or mentally competent are not cut and dried tests; the potential for ambiguity is ever-present. Doctors and lawyers sometimes get judgements wrong – people might be considered terminally ill then go on to confound expectations.
And our legal and medical systems are not perfect. For example, we’ve seen ongoing problems with Do Not Resuscitate (DNR) notices being placed on disabled people as a response by some doctors to the COVID 19 pandemic without consultation, despite being told by the Department of Health and Social Care they shouldn’t do so. (2,048 adult social care providers responded to the Care Quality Commission. They said that 508 DNR decisions made since 17 March 2020 had not been agreed in discussion with the person, their relative or carer).
Assisted suicide is available in countries across the world, with more considering it. Doesn’t this show it’s working
No, it doesn’t. We’ve seen the broadening of categories that are available to people wanting to commit suicide. In Oregon, this includes establishing ‘loneliness’ as a category. In the Netherlands, grounds for seeking an assisted death include alcoholism, anxiety and depression.
These conditions can all be treated or addressed with a combination of approaches, support and interventions.
It underlines the importance of supporting people with significant health conditions to live, not to die.
Dignity in Dying says that 86% of disabled people say there should be assisted dying. You’re just a vocal minority, aren’t you?
We think you have to look carefully at how opinion poll questions are asked. Everyone, including disabled people, would prefer a death that is free from pain and other distressing symptoms. Contrast the promise of that with an image of the worst kind of death without the support and symptom control, and people will opt for the former.
If the poll said, ‘Should people who are lonely or depressed be assisted to poison themselves, we imagine the vast majority would say ‘no’.
Has Covid 19 had an impact on your views?
The pandemic has had a disproportionate impact on disabled people. 6 out of 10 dying from the Coronavirus have been disabled people. In the meantime, we’ve struggled with the impact of shielding and getting access to services and health and social care. It’s felt like we’ve been relegated from our already poor position as members of society.
The policy response to the pandemic has not served us well. It makes us all the more concerned about any proposals to change the law around assisted suicide. It’s also shone a light on how much of a difference good services – health and social care, housing, for example – make to people’s quality of life. If you have choices and decent health and social care, you can live a good life right to the end. If you are lonely, trapped at home and without the support to live free from pain and other symptoms, you can’t.
You’ve talked about the problems. What is your solution?
This is a polarising debate. It makes it hard to have a conversation that ensures all people get their voices heard.
Our view remains it’s a dangerous time to change the law.
We need to be better at talking about death and acknowledging the challenges facing the medical profession when it comes to delivering end of life care. We need better resources for those working in the arena and better conversations with those who are dying and their families. This will help us understand people’s hopes and fears around dying and focus on where the gaps are in people’s care.
And we need better support and services for disabled people and those with long term health conditions. Few would argue that, over the last decade, things have improved for us. We want support to live, not to die.
Once we have better support and services for those who need it and a sense that disabled people have a rightful and equal place in our communities and society, we’ll be better positioned to have a sensible debate about assisted suicide.
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Not Dead Yet UK (NDYUK) is a network of disabled people in the UK who have joined a growing international alliance of disabled people, who oppose the legalised killing of disabled people.
All those involved are disabled people including people with physical and sensory impairments, learning difficulties, and mental health conditions.
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