The Office for National Statistics (ONS) latest data has revealed that terminally ill people are twice as likely to take their own lives than those in the general population who are not terminally ill. Some would examine this and say, let’s change the law on assisted suicide to make it easier for this group to kill themselves. On the other hand, many public bodies, including those in the disability sector, palliative care doctors, parliamentarians, and the judiciary, are implacably opposed to changing the law on assisted suicide. Instead, they argue that more needs to be done to support dying and vulnerable people by providing universal access to treatment for their physical and psychological needs.
The cohort examined in the ONS study were predominantly people with a new diagnosis of a physical illness such as heart disease, and studies confirm that people are at the highest risk of suicide at diagnosis. Opponents of assisted suicide are deeply concerned about whether patients are assessed for any mental illness and if any specialist support is offered at the point of diagnosis. They suggest that appropriate supportive interventions at diagnosis may help alleviate suicidal thoughts.
If we now imagine that the study focussed on young people with eating disorders, not older people with heart disease. The findings might be similar, but there would be an outrage if the solution to these findings were to legalise assisted suicide. Instead, there would be a demand for better mental health support. Why, therefore, should older people with terminal conditions be treated differently?
Baroness Campbell of Surbiton, Founder of Not Dead Yet UK (NDYUK), says, “We know we have the ability, technology, and medical expertise to help people live and offer them a comfortable, dignified death. Sadly, this option is not available to everyone, as high-quality health, social and palliative care are in short supply”.
People diagnosed with a terminal illness or born with a terminal illness need to feel protected, cared for and supported. If we change the law on assisted suicide, we suggest the opposite, that terminally ill people are expendable, and their lives are less valuable.
Baroness Finlay of Llandaff has successfully campaigned for a law to ensure that palliative care should be offered throughout the country. This could mean that appropriate end of life care becomes more widely available, which should help reduce the incidence of suicide.
When I think about the future and how we care for terminally ill people, I want to see a world where everyone has access to the support they need, where the dying feel valued and are treated with kindness and respect. Assisted suicide should never be seen as a treatment plan.
This year you have helped NDYUK successfully defeat the latest House of Lords Private Members Bill to bring in assisted suicide legislation, plus a lethal amendment to the Health and Care Bill which attempted, to force the government to introduce Assisted Suicide (AS) legislation in their name. These campaigns which resulted in 2 major rejections, marked the twelfth time that proposals for AS have failed to be passed by Parliamentarians!
On a positive note, the Government adopted Baroness Ilora Finlay’s amendment to the Health and Care Bill which makes palliative care a universal right, to be commissioned as a core service of the NHS. This is a vital step towards the model of care we have campaigned for at the end of life that is desperately needed.
But the dangers of assisted suicide, have not gone away, and the proponents of Assisted Suicide continue to campaign for a change in the law. They are using “increased public support and growing numbers of countries successfully legalising Assisted Dying around the world”, as a basis for an argument for a change in the UK.
NDYUK is the only organisation of disabled people campaigning effectively to prevent such a law from threatening the lives of disabled people. We want to stop further risks of disabled people becoming suicidal, often due to the lack of support for them to lead dignified lives without pain. We recognise that thousands of disabled people are already on the edge due, to social care cuts, the galloping rise in the cost of living and day-to-day experiences of discrimination. So…
Please help us to continue to fight against future attempts to bring in assisted suicide legislation, which must surely be the deepest threat to the lives of disabled people in the UK and questions our right to thrive with dignity, purpose and ambition.
You can help by:
Becoming a member and supporter of the NDYUK campaign;
Offering to write articles on the issue of assisted suicide for NDYUK when requested;
Donating to the campaign (details on the donations page);
Promoting NDYUK news on social media;
Spreading the word.
The NDYUK network committee cannot work effectively without you. We want to thank all our members for all the essential voluntary help you have given over the years to resist legalising assisted suicide in this country. Without you, we would have been in a very different place today.
We look forward to continuing to hold our stance for as long as it takes, please continue to support the campaign and persuade others to sign up.
Ahead of the debate on amendments to the Health and Social Care Bill in the House of Lords, Baroness Jane Campbell reflects on the dangers of new legislation which could introduce assisted suicide by the back door.’
Few would argue there’s an awful lot to be worried about at the moment. As disabled people, we have a particular focus on a number of things, whether it’s the unwillingness of the government to support us during the pandemic, difficulties getting the health and social care we need and an increase in the costs of living that are making tight budgets even tighter.
This week the House of Lords is back debating the Health and Social Care Bill, which has many implications for disabled people but now has a new threat – assisted suicide by the back door.
The Conservative peer Lord Forsyth has thrown a googly into proceedings by tabling an amendment to the bill which would see draft legislation to allow terminally ill people to end their lives with medical assistance.
This is a cynical attempt by those in favour of changing the law on assisted suicide to attach a rider to new legislation which has the backing of the government. This is at a time when there is already an Assisted Dying Bill before the House of Lords, which is now waiting in the queue for thorough scrutiny.
It is wrong to use parliamentary procedure to try to impose new legal requirements on the (quite literally) life and death issue of assisted suicide into the substance of other legislation.
A debate about assisted suicide needs a detailed and rigorous approach. We need thoughtful and informed debate, with evidence from experts from across the opinion spectrum and an understanding of the impact of assisted suicide legislation from other countries. We need to carefully examine how people are treated at the end of their lives in this country, what options should be available to them and why it is people are often not getting the palliative care they need.
It is a controversial issue about which most of us have strong opinions. Last year the British Medical Association became neutral on the matter by a wafer-thin majority. Palliative care doctors argue strongly that the current law should remain as it is. The recent debate in the House of Lords saw a near 50/50 split of those in favour and those against.
In the meantime, legislators need to listen carefully to disabled people. We are concerned that changes to the law which open the door to assisted suicide will lead to pressure on us to take the lethal (and cheap) way out.
Instead of the thoughtful analysis needed, we get a distracting amendment from Lord Forsyth to government-sponsored legislation which allows for nothing of the kind. This type of political hijacking is unhelpful and unwarranted, and a waste of parliamentary time.
The Health and Social Care bill is an important piece of law that will impact services delivered to disabled people and incorporate a massive shakeup to the way our NHS is organised. It will also see the biggest changes in how people and their families have to pay for social care services that we have seen for decades. It will not only affect millions of disabled people. It will affect the vast majority of those who live in this country.
Parliament should spend its time and resources on scrutinising this bill in the appropriate way. We should not have to deal with the distraction of politicians attempting to manipulate the way Parliament works. Trying to sneak in such a fundamental change in the way we consider the end of life issues is wrong. I hope that Lord Forsyth will reconsider and withdraw his amendment.
Jane Campbell is a crossbench peer and co-founder of Not Dead Yet.
Proposed amendments to the Health and Care Bill could change the law on assisted suicide.
Attempts are being made to introduce new clauses in the Health and Social Care Bill currently being debated in the House of Lords that would allow assisted suicide. One amendment is proposed by Baroness Meacher and the other by Lord Forsyth of Drumlean, Lord Falconer of Thoroton and Lord Warner. The clauses are reproduced below.
We understand that introducing clauses in this way is frowned upon by most Peers so it is possible that they will not be accepted. Nonetheless, it is yet another example of the lengths that our opponents will go to change the law on assisted suicide.
Here are a few of the essential points to be made regarding the amendments to the Health and Care Bill.
This is a Health and Care bill and therefore it should not be used to change the criminal law.
It is inappropriate to use amendments in this bill to open the door to assisted suicide when there is already an assisted dying bill in the House of Lords awaiting the committee stage.
The amendments made in the Health and Care Bill do not take into account the experience of other jurisdictions that have legalised assisted suicide and they contain no safeguards.
We urged the House of Lords to reject these proposed amendments.
203 Page 62, line 19, at end insert—
“(1AA) The regulations must make provision—
(a) for anyone with a diagnosis of terminal illness to be offered a conversation about their holistic needs, wishes and preferences for the end of their life, including addressing support for their mental and physical health and wellbeing, financial and practical support, and support for their social relationships,
(b) that, where that individual lacks capacity for such a conversation, it is offered to another relevant person, and
(c) that for the purposes of section 12ZB a relevant authority must have regard to the needs and preferences recorded in such conversations in making decisions about the procurement of services.”
297 Insert the following new Clause—
(1) The Secretary of State must, within the period of 12 months beginning with the day on which this Act is passed, lay before Parliament a draft Bill to permit terminally ill, mentally competent adults legally to end their own lives with
(2) In preparing the draft Bill and any accompanying documents and in making arrangements to lay them before Parliament, the Secretary of State must take account of the need—
(a) to respect that this is a matter of conscience, and
(b) to enable Parliament to consider the issue.”
Member’s explanatory statement
This amendment ensures that the scope of the regulations as to patient choice includes those atthe end of life.
Although it is early days it would seem that the latest attempt to change the law on Assisted Suicide will not make it through all the processes needed for the Meacher Bill to become law. This is not a great surprise as senior figures in government have indicated that it will not be supported.
Before we start cracking open the champagne bottles it’s important to recognise that this is just another step in a very long journey. The Bill may have further to go and will return in a different form perhaps, so we will once again have to deploy all of our resources to resist it.
Your continued support over the coming months will be crucial.
Now is the moment to say thank you to all of you who have helped us to get our points across and by so doing ensure that the voices of disabled people are heard.
Finally here is a link to Baroness Jane Campbell’s article in today’s Guardian which summarises our concerns.
Medics write a letter to Health Secretary against Assisted Suicide Bill which would let clinicians provide legal drugs for terminally ill people
By Christopher Hope, CHIEF POLITICAL CORRESPONDENT and Maighna Nanu Daily Telegraph
Nearly 1,700 doctors have written to Sajid Javid to oppose weakening assisted suicide laws, saying they will refuse to help patients take their own lives.
The intervention comes ahead of Friday when peers are expected to pass a Private Members’ Bill through the Lords which would allow doctors to provide lethal drugs to terminally ill people who want to end their lives.
Boris Johnson, the Prime Minister, and Mr Javid are understood to be against weakening the law – but the peers’ Bill is expected to go to the House of Commons within months when it will probably be put to a free vote of all MPs.
‘Enormous’ shift ‘should not be minimised’
The letter – signed by 1,689 doctors and sent to the Health Secretary on Tuesday – said: “The shift from preserving life to taking life is enormous and should not be minimised.
“It is impossible for any government to draft assisted suicide laws which include legal protection from future extension and expansion of those laws.”
They added: “Any change would threaten society’s ability to safeguard vulnerable patients from abuse, it would undermine the trust the public places in physicians, and it would send a clear message to our frail, elderly and disabled patients about the value that society places on them as people.
“Far from one person’s decision affecting no one else, it affects us all. Some patients may never consider assisted suicide unless it is suggested to them.
“The cruel irony of this path is that legislation introduced with the good intention of enhancing patient choice will diminish the choices of the most vulnerable.”
Signatories include Professor Johann de Bono, a professor in experimental cancer medicine at the Institute of Cancer Research; Prof David Galloway, the former president of the Royal College of Physicians and Surgeons of Glasgow; and Rob George, professor of palliative medicine at King’s College London.
They conclude: “We would not take patients’ lives – even if they asked us to – but for the sake of us all, and for future generations, we ask that the law remains unchanged.”
Concerns dismissed by Baroness behind the bill
It comes after the British Medical Association, the biggest union of doctors, dropped its opposition to assisted dying last month and adopted a neutral stance.
Baroness Meacher, pictured here speaking in the House of Lords, is the peer behind the Bill
The doctors’ concerns were brushed aside by Baroness Meacher, the peer behind the Assisted Dying Bill, who said: “It is always easy to find a list of people to support any position.
“More significant is that the BMA last month ended its opposition to assisted dying following their survey of their members showing a majority of doctors in favour of assisted dying.”
The Royal College of Physicians said it was neutral on the issue in 2019.
Recent research from the pro-assisted suicide campaign Dignity in Dying found that up to 6,500 terminally ill people try to take their own lives every year because of a ban on assisting their death.
The Bill states clearly that before assistance to die could occur the High Court (Family Division) would need to be satisfied that a person seeking assistance to die has the mental capacity to make that decision.
The attending doctor and independent doctor involved would need to be similarly satisfied of the person’s mental capacity. If they have doubt, they must refer the person for assessment to a specialist (any registered psychiatrist) and take account of any opinion given.
The Bill also states that the Secretary of State may issue Codes of Practice on issues including assessment of mental capacity; and taking account of depression and other psychological disorders that may impair a person’s decision-making (2 distinct topics, in one or more Codes).
On the face of it these sound like sensible safeguards; but they raise significant questions, some practical, some much more fundamental.
The fundamental challenge of providing safeguards linked to depression and other mental health challenges in the context of assessing capacity
The interaction between mental health challenges (‘psychological disorders’) and mental capacity is complex. Wesseley’s recent review of the Mental Health Act attempted to address its complex relationship with the Mental Capacity Act but there remain unresolved issues.
Assessing capacity in someone with both terminal illness and depression is not straightforward. Depression is common amongst people who are terminally ill: indeed a diagnosis of terminal illness is the kind of major loss that can trigger depression. A desire for suicide is a major symptom of depression, but it may also be a well-thought-through response to impending death. Weir argues that it is very hard to distinguish between the two. The person may be motivated by a combination of the two, in which case, how does the assessor decide whether the person’s desire to die is coloured more by depression or more by their rational response to terminal illness? And how do assessors across the country do so consistently?
In addition, depression tends to fluctuate, which presents both challenges in assessing what is truly the person’s ‘settled will’ – and opportunities to support people through their times of despair: with treatment and support, the wish to die can be ameliorated even if prognosis is short. Price et al (2014) summarise the research evidence as follows:
Depression is common in palliative care and desire for hastened death is strongly associated with depression in palliative populations. In Oregon it has been shown that depression is not always appropriately identified in patients requesting assisted suicide. There is evidence to suggest that treatment of depression can reduce the wish for hastened death
Even if the wish to die is coloured by depression, it is perfectly possible that she or he would still be assessed as having capacity (depending on the definition used – see discussion below). Many people experiencing depression or other mental health challenges meet the ‘capacity’ criteria of the Mental Capacity Act: they are quite able to understand information, weigh up options and communicate a decision on life issues large and small.
It is not straightforward to remove autonomy just because someone has depression; indeed it could be a case of disability discrimination if someone with depression, with capacity, were denied a ‘treatment’ option just because of their impairment (depression). If, as seems likely, large numbers of people with mental health challenges would be considered to have capacity, then the apparent safeguard for people with depression rather melts away.
It is also not clear that the attending independent doctors would always refer effectively for a capacity assessment. The Royal College of Psychiatrists pointed out that many doctors do not know how to assess for the presence of depression in people who are terminally ill.
The (potential) Code topic of ‘taking account of depression and other psychological disorders that may impair a person’s decision-making’ may sound like a safeguard that is additional to the (separately listed) safeguard of assuring that the person has mental capacity. However, the legal question (as laid out in this Bill) is simply whether the person has capacity to make this major decision. Therefore the ‘depression’ safeguard appears to be a subset of the ‘capacity’ safeguard – in effect a reminder to think about the impact of psychological disorders (alongside learning disability, dementia or other potential sources of incapacity) when assessing mental capacity to decide.
This would face mental health services and voluntary sector partners with a challenge. Should they sustain their long-standing commitment to prevent suicide amongst people experiencing mental health problems wherever possible, driven by a national policy agenda that has set targets for suicide reduction and ensured that every local area has an all-age multi-agency suicide prevention plan in place?  Should multiple agencies always start by reaching out to people who are seeking to die, listening, valuing them, supporting them to want to live? Or should they accept that for the sub-set of people with mental health problems who also have a terminal illness, the one question is whether they have the capacity to decide and have made a decision – in which case, would they ditch the whole approach to suicide prevention in favour of autonomy?
This dilemma brings into sharp focus some of the well-known contradictions between Mental Health and Mental Capacity law. Under Mental Health law, someone who DOES have capacity to make decisions can nonetheless be detained and treated against their will if they have a mental disorder and certain risk criteria are met. It seems possible that under this Bill someone could be given psychiatric treatment against their will – ie denied autonomy – but nonetheless have the right to assistance to die as long as they met the definition of mental capacity.
Much depends on how mental capacity is defined and assessed. Price et al note that where the ‘bar’ is set – on a continuum from a basic cognitive capability through to a full understanding of context and implications – has not been settled in jurisdictions with assisted dying legislation. Different clinicians set the bar at different points, influenced by factors including their own values. In a survey of US forensic psychiatrists, those with ethical objections to assisted suicide recommended higher thresholds for competence and a more extensive review of the decision . The Mental Capacity Act requires that clinicians first assume capacity and have to demonstrate a LACK of capacity to act in someone’s best interests. The Mental Capacity Act does not provide a clear framework for deciding whether someone DOES have capacity to make the major life and death decision of assisted suicide.
The Bill does not begin to address these dilemmas. It may gently imply that taking account of depression will offer safeguards; but these would risk being paternalistic if they applied to people with capacity (however defined). As drafted they may turn out to be a chimera.
In addition, there may be a question about whether some mental health problems ARE terminal illnesses. Someone with advanced anorexia, for instance, may be very reasonably expected to die within 6 months. Treatment options may have been exhausted. She or he might or might not have mental capacity to decide – but if they did, is there any reason they should not be assisted to die? The same could potentially apply to someone with severe depression who has not responded to treatment and makes repeated suicide attempts. In a climate of commitment to ‘parity of esteem’ between mental and physical ill-health, a non-discriminatory case could be made for accepting some people with mental health problems (and no other terminal illness) for assisted dying.
Finally, the Bill suggests another potential Code topic, on the information on treatment, support and end of life care that would be made available to the person. There is no requirement for actual availability of mental health support or end of life care – just a potential requirement to inform people of what does exist. This is a weak safeguard for people with mental health challenges in a context in which there are huge gaps and delays in getting mental health support: the Mental Health Foundation, for instance, estimates that 85% of over-50s with depression receive no help at all from the NHS. There are also of course no guarantees in the Bill of support with social isolation, financial challenges or inappropriate housing. These social determinants make mental health challenges (including suicidal depression) more likely in the first place; and once people have mental health problems, such social problems tend to intensify, in a vicious cycle. Surveys by the CQC of the experience of people receiving community mental health support consistently find that over 40% report that they would have liked support with finance, benefits and employment but did not get them. It would be quite possible for people to develop depression in the context of major social problems, subsequently become terminally ill, get no support with their isolation and poverty and opt to die while the opportunity to intervene with multi-faceted support went unaddressed.
On mental capacity assessments, the attendant and independent doctors must seek an opinion from a registered psychiatrist if there is any doubt about the person’s capacity. It is not clear, though, that every registered psychiatrist has the necessary assessment skills: many psychiatrists are much more familiar with assessing criteria for detention or treatment under the Mental Health Act (which do not include the mental capacity to make decisions) than criteria under the Mental Capacity Act. This increases the risk of inconsistent assessments of capacity. Assessing capacity amongst people with learning disabilities and autistic people has been found, in the Netherlands, to be inconsistent between clinicians and to be influenced by views of disabled people’s lives.
Secondly, we know that existing Codes of Practice are not implemented with sufficient effectiveness in relation to people with mental health challenges: the CQC’s 2019 evaluation of compliance with the Code under the Mental Health Act 1983 notes ‘particular areas of concern where we found that the guiding principles were not being routinely implemented to inform practice in the way they should’. This was true in fundamental areas such as using the least restrictive approach, and involving patients in their own care. ‘Through our review, we have not found evidence that the Code has prompted a substantial change in the way services are empowering and involving people in their care’. These are deep-rooted problems of culture and practice and we cannot assume that provision of one or more Codes on assisted dying would be sufficient to ensure that real engagement would take place with people with mental health challenges at a time when they were facing major decisions about their life and death. Similarly, the post legislative review of the Mental Capacity Act found that the Act was not being implemented in the way intended and that the duties imposed by the Act were not widely followed.
Parliament should think very carefully about these complexities rather than being reassured by potential Codes and safeguards that seem to melt away as they are examined. Ambiguities and complexities leave doors open to subsequent legal interpretation, challenge and legislative amendment that could expand the remit of this Bill and erode the apparent (but often flimsy) safeguards. There is a tension between the equality of disabled people and safeguards that have not been grappled with in this Bill. If there is an assumption that the presence of depression or other mental health challenges means someone should be denied autonomy, that flies in the face of the Mental Capacity Act and the equality of disabled people. If that is not the assumption, then the safeguards are very narrowly delimited, the Bill seems to drive a coach and horses through the mental health policy objective of suicide prevention and there may be risks of following countries like Belgium in making assisted dying increasingly available to people with mental health problems, and the Netherlands, where people with a learning disability and autistic people are being offered euthanasia by doctors who are unable to make consistent, competent capacity assessments.
People living with mental health challenges, learning disabilities, dementia and other cognitive impairments should be at the heart of a deeper discussion about assisted dying than has informed this Bill to date.
Liz Sayce. October 2021
This article is written in a personal capacity and does not reflect the views of any organization.
Liz Sayce chaired the Commission for Equality in Mental Health, hosted by the Centre for Mental Health, 2019-21. She is a Visiting Senior Fellow at the London School of Economics and was Chief Executive of Disability Rights UK (and its legacy charity Radar) from 2007-2017, where she led work for equal participation for all, through programmes on independent living, career opportunities and shifts in cultural attitudes and behaviour. Liz is a Trustee of ADD (Action on Disability and Development), Vice-Chair of the Social Security Advisory Committee and a member of the Disability Advisory Committee of the Equality and Human Rights Commission. She has been a Non-Executive Director of the Care Quality Commission and a member of the Healthwatch England Committee. With a background in mental health and disability policy, previous roles include Director of Policy and Communications at the Disability Rights Commission and Policy Director of Mind. She led an Independent Review into disability employment programmes for Government in 2011 and has published widely on mental health, disability and social participation. She undertook a Harkness Fellowship in the USA resulting in a book (From Psychiatric Patient to Citizen, 2000 – updated in 2016).
 A doctor ‘registered in the specialty of psychiatry in the Special Register kept by the General Medical Council’ according to the Bill
 Royal College of Psychiatrists Presidents’ Blog: Assisted suicide for the terminally ill 26/7/2014
 Price et al.: Concepts of mental capacity for patients requesting assisted suicide: a qualitative analysis of expert evidence presented to the Commission on Assisted Dying. BMC Medical Ethics 2014 15:32. doi:10.1186/1472-6939-15-32
 Rayner L, Lee W, Price A, Monroe B, Sykes N, Hansford P, Higginson IJ, Hotopf M: The clinical epidemiology of depression in palliative care and the predictive value of somatic symptoms: cross-sectional survey with four-week follow-up. Palliat Med 2011, 25(3):229–241
 Price A, Lee W, Goodwin L, Rayner L, Humphreys R, Hansford P, Sykes N, Monroe B, Higginson IJ, Hotopf M: Prevalence, course and associations of desire for hastened death in a UK palliative population: a cross-sectional study. BMJ Support Palliat Care 2011, 1:140–148
 Ganzini L, Goy ER, Dobscha SK: Prevalence of depression and anxiety in patients requesting physicians’ aid in dying: cross sectional survey. BMJ 2008, 337:a1682
 Breitbart W, Rosenfeld B, Pessin H, Kaim M, Funesti-Esch J, Galietta M, Nelson CJ, Brescia R: Depression, hopelessness, and desire for hastened death in terminally ill patients with cancer. JAMA 2000, 284(22):2907–2911
First, a big “thank you” to all of you who managed to find a time to either send us messages of support or who put together one or two-minute videos explaining why you are so opposed to a change in the law on assisted suicide. These video messages are now being distributed to the House of Lords where we hope they will help persuade Peers not to progress the bill.
Our founder Baroness Campbell is preparing her speech for the debate to be held on the 22nd of October. As a precursor, she has written an article for the Parliament’s internal “newsletter” The House. You can read her article by clicking here.