Categories
Assisted dying assisted suicide Disability Do Not Resuscitate Meacher Bill

House of Lords Debate over

The end of a very long day and a long debate.

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.

https://bit.ly/2ZhROnv

Categories
Assisted dying assisted suicide Disability Meacher Bill

We would not take patients’ lives’

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.

Mr Javid declined to comment.

Categories
Assisted dying assisted suicide Disability Meacher Bil Mental Capacity Mental Health

The complexity of addressing mental capacity and mental ill-health

The Meacher Bill and its safeguards

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[1]) 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[2] 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[3]. 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[4]. Price et al (2014)[5] summarise the research evidence as follows:

Depression is common in palliative care[6] and desire for hastened death is strongly associated with depression in palliative populations[7]. In Oregon it has been shown that depression is not always appropriately identified in patients requesting assisted suicide[8]. There is evidence to suggest that treatment of depression can reduce the wish for hastened death[9]  

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[10].

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? [11] 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[12] 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 [13].  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[14]. 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[15]. 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[16]. 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.     

Specific points

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[17].

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[18]. ‘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.[19]

Conclusion

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[20].

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

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).

      


[1] A doctor ‘registered in the specialty of psychiatry in the Special Register kept by the General Medical Council’ according to the Bill

[2] https://www.gov.uk/government/publications/modernising-the-mental-health-act-final-report-from-the-independent-review

[3] https://www.apa.org/monitor/2017/12/ce-corner

[4] Royal College of Psychiatrists Presidents’ Blog: Assisted suicide for the terminally ill 26/7/2014

[5] 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

[6] 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

[7] 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

[8] 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

[9] 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

[10] ODOC BMA Briefing.pdf

[11] https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/973935/fifth-suicide-prevention-strategy-progress-report.pdf

[12] Op cit

[13] Ganzini L, Leong GB, Fenn DS, Silva JA, Weinstock R: Evaluation of competence to consent to assisted suicide: views of forensic psychiatrists. Am J Psychiatry 2000, 157(4):595–600

[14] https://www.mentalhealth.org.uk/statistics/mental-health-statistics-older-people

[15] Sayce L (2016) From Psychiatric Patient to Citizen Revisited. Palgrave

[16] https://www.cqc.org.uk/publications/surveys/community-mental-health-survey-2020

[17] Tuffrey-Wijne I, Curfs L, Finlay I, Hollins S (2018) Euthanasia and assisted suicide for people with an intellectual disability and/or autism spectrum disorder: an examination of nine relevant euthanasia cases in the Netherlands (2012-2016). BMC Medical Ethics 19:17; and Tuffrey-Wijne I, Curfs L, Finlay I, Hollins S. (2019) “Because of his intellectual disability, he couldn’t cope.” Is euthanasia the answer? Journal of Policy and Practice in Intellectual Disabilities 16 (2), 113-116

[18] https://www.cqc.org.uk/sites/default/files/20190625_mhacop-report.pdf

[19] House of Lords – Mental Capacity Act 2005: post-legislative scrutiny – Select Committee on the Mental Capacity Act 2005 (parliament.uk)

[20] Tuffrey-Wijne e al op cit

Categories
Assisted dying assisted suicide Care Not Killing Disability Do Not Resuscitate Meacher Bil

Campaign Gathers Pace

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.

You can see all of the videos by clicking on https://www.youtube.com/channel/UCsHhEX9nXB1x3m840GiFFyg/videos

We have compiled a short film showing the written messages sent in by supporters please keep them coming. Write to us at info@notdeadyetuk.org

Here’s a link to the messages video. https://youtu.be/moLwo6FskLI

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.

https://www.politicshome.com/thehouse/article/assist-disabled-people-to-choose-life-not-death

Finally, one of our supporters John Smith has put together a Mind Map that he used to collect his thoughts before he wrote his letter to the Peers. You might find it helpful

Categories
Assisted dying assisted suicide Disability Meacher Bil

Let’s Get Writing!

Hello once again.

Thank you for your response to our call for action. Tremendous!

Now we need more from you. Can you write to a member of the House of Lords?

As you know the debate on the Assisted Dying Bill takes place in the House of Lords on the 22nd of October so it is vital that as many disabled people as possible write to say why they are worried about a change in the law as proposed in the Meacher Bill.

Your email or letter doesn’t need to be more than one page or a couple of paragraphs.

We are urging you all to speak up because our voice needs to be heard in this vitally important debate. Remember Nothing About Us Without Us!

We have suggested some ideas to use. If you have any difficulties contact us at info@notdeadyetuk.org

Thank you


Dear (Name),

I’m/We are writing to you about the Assisted Dying Bill which has its second reading in the House of Lords on 22nd October 2021. 

I/We really need your help in influencing other members of the House of Lords to reflect carefully on this Bill which will affect the lives of thousands of disabled and terminally ill people. As a disabled person, I am deeply concerned about the impact of the changes being proposed in the Meacher Bill. I/We am/are asking you to oppose the Bill.  

(You could choose any one of these issues to include in your note)

– Non-existent and badly drafted safeguards to the Bill

– The inevitable change in the relationship between Doctor and Patient (Do no harm.)

– Potential abuse by Doctors of believing their patient will be better off dead (because they are subject to the same discriminatory attitudes as the rest of society)

– Possible coercion from family members

– Discrimination, for example between those with physical and/or learning disabilities.

– Slippery slope (for example other countries expanding the law to include non-terminal conditions and disabled people)

You only need to choose one or two of the above which directly affects your situation and/or that of someone who you advocate for.

If it helps, you can send your letters to us and we will address and send them on your behalf to info@notdeadyetuk.org

Categories
Assisted dying assisted suicide Disability Uncategorized

Urgent Action Notice

We Must Act by 8th October 2021!

Not Dead Yet UK urgently needs your help and there are easy ways here to join in and speak up.

We’re fighting for our lives again and the opposition will win if we don’t act now.

Why?

The Assisted Dying Bill goes back to the House of Lords on Friday 22nd October 2021 for its second reading when there is a big debate.

The Lords don’t realise how many people are very worried about this Bill.

The Bill is about making assisting suicide legal, including when people are not dying yet – that’s why our opponents are trying to change the law.

The safeguards in the bill do not say assisted suicide must be a last resort and ONLY for people who are terminally ill

End of life care is underfunded. This means people who are terminally ill don’t always get the help they need and they sometimes suffer.

But the bill is not about relieving suffering – it’s about ending many people’s lives early. Killing people isn’t the way to fix this problem.

We have a little time left to show how many of us (especially those with degenerative conditions, and long term illness), would rather see the government improve palliative care than make an assisted suicide Bill.

You can read more about NDY UK’s objections to the Bill here:

 http://notdeadyetuk.org/we-need-help-to-live-not-to-die/

What do we want?

We know life can be a struggle – but we know someone’s suffering can be relieved without resorting to killing them.

Disabled people risk being killed because decent health care for us is seen by our opponents as too difficult, or too expensive to organise.

For example, young disabled people with mental health trauma are already being offered assisted suicides by doctors in other countries. In Canada, their government finance department has calculated that they save over £8,000 for every person killed.

We think the focus should be on improving the health and care support available – palliative care doctors and nurses are our allies in this and agree. After all, doctors and nurses have been supporting us to live!

We know many people who rely on life-saving health care are afraid of what will happen if assisting suicide becomes normalised, instead of trying to give us support for all our lifetime.

Those of us who can find a way to speak out need to advocate for many more people who can’t.

Click here to see the Ways You Can Help

Take Action Now!

We must fight for assistance to live – not assistance to die.

Help us ask the government to invest in life, not death 

Individuals.

  1. Share this notice everywhere you can.
  2. Then share your views.

At the moment the Lords don’t know how many people are worried about this Bill.

We need to tell them!

Send us a one minute video or audio, or a short written message about your concerns – we will share these with Lords.

You can send your video or audio file to us at:

Video Dropbox link

https://www.dropbox.com/sh/8qby4797hfz8mnm/AAAQ0P3D_RvZPTk8c9j9Xi1Ya?dl=0

You can send us an email at info@notdeadyetuk.org

Unsure what to say?

Here are some ideas and questions to help people get started – you could answer any of these.

Start your message by giving your name and your impairment if you can.

Why does this Bill which would make assisted suicide legal worry you?

Do you think the Bill is safe? If not say why you are worried.

How will it affect your health or social care?

How will it affect your mental well-being?

Will people treat you differently if assisted suicide is available?

Will it undermine your rights?

How will it affect other people?

Do you think there will be a widening of who this law would apply to after it came in?

Background:

Black and white photo of someone with their head in their hands

Nobody chooses to feel so desperate that they want to commit suicide.

We all need to be able to choose a decent life and then have support to die comfortably, peacefully, and with the people who matter to us when our time eventually comes.

We know people are often unsupported and many will unnecessarily feel they have no choice but to die by suicide because of unmet care needs. It doesn’t need to be this way. We shouldn’t be ok with it.

Support to live a better life is not offered as a choice in this bill.

Investment in better palliative care is not a choice in this bill.

Our lives are worth living and we deserve a good quality of life – not a beastly choice between suffering or being put down like a pet with expensive health needs.

Discrimination

The recent Covid 19 pandemic has highlighted how disposable our lives are to this government.

There have been numbers of cases reported of disabled and older people having Do Not Attempt Resuscitation notices applied to them, without consent. 

Many of us were formally ruled out of the right to intensive care support, in advance.

More than a million of us weren’t added to shielding lists.

Many learning disabled people living in shared housing died because of the lack of safe support and protection.

Suicides in our community have increased.

This is the worst time in modern history to offer people suicide instead of real help!

It’s About Us – Without Us

Cartoon of disabled people holding a banner with "Nothing about us without us" on it.

The opinions of the wider public show they want assisted suicide. But they may have no or little experience of the real lives of the disabled people this law will apply to. They do not understand or know about the many struggles that we overcome every day. They find it difficult to believe that our lives are meaningful.

We do know this – but views from people directly affected are not being heard – we need to speak up together! Our views should be central – because it’s about us.

No disabled people’s organisations have ever campaigned FOR this. Only against.

We believe that the majority view is that we cannot trust this erosion of our rights – please help us prove that is what many of you think.

More about public opinion and statistics are here:

http://notdeadyetuk.org/lies-damned-lies-and-statistics/

Categories
Assisted dying assisted suicide Disability

BMA Goes Neutral

Doctors and medical students at the BMA annual representative meeting on the 14th of September passed, by a narrow majority, a motion which said: ‘In order to represent the diversity of opinion demonstrated in the survey of its membership, the BMA should move to a position of neutrality on assisted dying including physician-assisted dying.’

The motion was carried by 49 per cent of representatives, with 48 per cent against and 3 per cent abstaining.

This supersedes the association’s previous policy of opposing assisted dying, which had been in place since 2006. Being neutral means the BMA will not support or oppose a change in the law.

Separately, the BMA representative body passed another motion calling for ‘robust conscience rights’ to be included in any future legislation on assisted dying in the UK, meaning healthcare workers should be able to object conscientiously to participating in assisted dying.

The move to a position of neutrality comes after the association polled its membership on the issue last year. When asked about a change in the law to permit doctors to prescribe life-ending drugs to eligible patients, the survey found:

  • 40% of surveyed members said the BMA should actively support attempts to change the law, one in three (33%) favoured opposition and one in five (21%) felt the BMA should adopt a neutral position
  • Half (50%) of surveyed members personally believed that there should be a change in the law to permit doctors to prescribe life-ending drugs. 39% were opposed, with a further 11% undecided.
Categories
Assisted dying assisted suicide Disability Meacher Bill

It’s impossible to make the choice to live – let alone thrive – if you’re only offered ways to die.

Dr Peter Scott Morgan gave a thoughtful and provocative presentation on behalf of NDY to the All-Party Parliamentary Group on Dying Well earlier this month.

He also wrote a couple of articles which have been published in The Times (£) I wrote this with my eyes — don’t tell me there’s no hope | Comment | The Times and inews  https://inews.co.uk/opinion/motor-neurone-disease-tech-assisted-dying-law-changes-1110154.

They’re both based on an article he wrote which we thought you might like to see, which is below.

All my life I’ve been passionate about equality and fairness. Consequently, when I heard of a move to update the law on assisted dying, I intuitively supported it; the intentions appeared so obviously reasonable, compassionate and humane.

But as a scientist, I’m trained to question even the obvious. So, I set about researching the Bill’s pivotal assumption that it’s possible to ensure informed choice without pressure. And I focused on motor neurone disease (MND) – the ‘cruellest disease’ and often-used justification for assisted suicide.

Fortunately, I’ve spent 30 years analysing complex social systems to predict unexpected consequences. And I also know a bit about MND because I have late-stage MND myself. Since 2017 doctors agreed I might die within six months. Now, I’m almost completely paralysed. Locked In. Allegedly, well past my death-best-before date.

My research uncovered three things.

It’s impossible to make an informed decision about your options if the medical community around you isn’t aware of how many exciting alternatives are emerging. Take my own instance. Thanks to pioneering NHS surgeries, continuous healthcare funding to look after me at home, and cutting-edge hi-tech that lets me speak in my original voice (and type this) using only my eyes – ‘invariably fatal’ MND may never get to kill me. Heart disease or dementia may do the honours. What’s more, my new capabilities will keep improving – in pace with computers.

Already, my overall quality of life is exceptional. I have love. I have fun. I have hope. I have dreams. I have a purpose. And I’ve found the trick to enjoying total paralysis is simply to imagine you’re in a luxury spa hotel and the maître d insisted you put your feet up and don’t move a muscle.

Mine is only one instance of rewriting the future of extreme disability. How many doctors tell their newly diagnosed MND patients that there’s such hope?

It’s impossible to make the choice to live – let alone thrive – if you’re only offered ways to dieLet’s give an example. To survive with MND long-term, you typically need an operation called a tracheostomy that lets a portable device breathe for you, as well as a cough-assist machine that clears your lungs of phlegm. In the UK, decisions on whether these options are available to you if you have MND are made locally not nationally. As a result, some who desperately want to live with MND are being told they must die instead – because of where they live. Less than 0.5% of people with MND in the UK receive this life-saving combination; in Japan, it’s over 30%. If I’d carried on living where I grew up, I’d have been refused treatment and died in 2019.

It’s impossible to ensure people make their decision without pressure when the current system is so unrelentingly negative.Just do an internet search of ‘MND’ and you’ll see what I mean. Avoiding coercion requires people to believe there are serious alternatives. Otherwise, it’s a sham ritual of decision making whose outcome was never really in question. Equally, I worry that many making this decision may be clinically depressed. Or so worried about the emotional and financial burden they’ll bring it feels an act of love to sacrifice themselves for the good of those remaining.

So, what do I now feel about the Bill to change the law on assisted suicide?

Confusion about the likelihood, let alone ‘inevitability’, of intolerable suffering; concern that we’re not ‘only shortening life by a few months’; worry there are insufficient protections against patients not being fully informed; uncertainty over being ‘terminal’ rather than simply ‘disabled’; anguish that some with an extreme disability may unnecessarily kill themselves in anticipation of what they incorrectly believe will inevitably happen; upset at the injustice of protecting an individual’s human right to choose to die, without putting the same effort, education and funding, into their right to thrive.

My intuition still says to update the law on assisted dying. But it must be equal and fair, otherwise, it becomes discriminatory euthanasia. Perhaps unknown to its designers, these proposals are biased towards unnecessarily culling the very people who would cost the most to keep alive and help thrive. That may be economically convenient. But it’s also cruel and uncivilised.

We’re better than that.

Dr Peter Scott-Morgan is a scientist researching breakthroughs in the clinical care of profound disability. He was diagnosed with motor neurone disease in 2017.

Categories
Assisted dying assisted suicide Disability Meacher Bil

We Need Help to Live Not To Die.

The briefing below lays out NDYUK’s concerns about the Meacher Bill and was used at the APPG for Dying Well webinar in July 2021


Assisted suicide bills introduced at Westminster and Holyrood

Baroness Meacher speaking in the Lords

Baroness Molly Meacher, the chair of Dignity in Dying, has introduced a bill in the House of Lords to make assisted suicide legal. The second reading is expected in the autumn.

MSP Liam McArthur has laid a similar bill before the Scottish Parliament.

Not Dead Yet UK’s view

Those who support the Meacher bill and campaigners outside Parliament use the term assisted dying. That is a euphemism. This legislation would give doctors legal powers to help patients kill themselves, to commit suicide.

We don’t claim to speak for all disabled people. Some of our members used to be in favour of changing the law.

Hands cupping and surrounding wooden figures of people

But we cannot see how safeguards will work well enough for us to feel confident that a change to the law will ensure disabled people are protected. This includes protection from coercion, from feeling a burden, from limited resources or from professionals subjectively deciding our lives are not worth living.

A review of how assisted suicide legislation is operating – in Oregon, Canada, Holland and Belgium – shows our fears are well-founded.

There are no organisations run by disabled people calling for the law to change.

Disabled people are living in difficult times. Cuts to social care and health services mean we don’t get the support that we need, and the pandemic has hit us harder than any other group. We can see the argument for a change in the law; but the current backdrop means now is not the time to support the Meacher bill.

We need help to live, not help to die. The law should remain as it is and protect the majority, rather than the few who might benefit from this bill.

The issue of ‘choice’

Freedom of choice has limits; such as where choice threatens the life or wellbeing of others. Legalising assisted suicide would pressure some of the most vulnerable people to end their lives. It would set a precedent for extending assisted suicide to other groups.

Signposts pointing in opposite directions one labelled individual the other Society

Society does all it can to prevent suicidal thoughts being enacted amongst the mentally ill and those who (temporarily) feel they cannot face the future.

Those seeking a change to the law say such ideals have no place when considering severely disabled and terminally ill people. If you can take your own life without assistance, society generally strives to protect you; but, if assistance to die is needed, they argue, it should be provided.

A fundamental shift in the relationship between doctors and patients.

Doctor holding a patient's hand.

The current blanket ban on assisted suicide provides absolute protection for disabled people. Medical staff cannot suggest an assisted suicide because it’s against the law. It makes the bond of trust between patients and doctors strong.

Legalising assisted suicide will irrevocably damage that relationship.

This debate is reinforcing negative perceptions of disability. It feeds into desires for a body beautiful and a perfect life untroubled by illness.

Guilt around being a burden on the family or society

Ill and disabled people may feel that they have a duty to die. Evidence from palliative care specialists shows most people who seek assisted suicide give ‘not wanting to be a burden’ as the main reason for seeking death.[1]

Wheelchair user at the foot of stairs while people go up leaving them behind.

Some 59% of those assisted in their suicides in Oregon in 2019 stated that being a ‘burden on family, friends or caregivers’ was one of their main reasons for requesting it.[2] Some 34% of those who were euthanised in Canada in 2019 cited ‘perceived burden on family, friends or caregivers’ as one of their main reasons.[3]

Other people will face pressure from relatives to seek help to end their lives. Such pressure might be subtle, but it will be there.

This bill raises deep concerns about how disabled people are viewed by society. Many people believe people they do not know would be better off dead because of their perceptions of illness and disability.

The role of good quality palliative and social care

Those who support this bill ignore the evidence from professional medical organisations that the prognosis of date of death is extremely difficult.[4]

There are no concrete rules to determine whether a person is terminally ill and in the last months of life, or whether they are ‘suffering unbearably’.

The choice of people nearing the end of life or who are suffering might be very different if they received the palliative and social care they should get. There is no right in Britain to palliative care.

Lots of words all jumbled up with Palliative Care standing out.

With modern medicine, the cause of much of the suffering is often not the illness itself – but unmet physical, mental or social care needs.

Nearly 14% of Canadians who requested legal medically assisted suicide in 2019 cited isolation and loneliness as a factor in their ‘choice’.[5]

The vast majority of doctors specialising in palliative and end of life care do not support a change in the current law[6]. We should listen to them.

The experience abroad: Evidence of the slippery slope

The idea that we would be embarking on a slippery slope is borne out by data and experiences from countries that have introduced so-called right-to-die legislation. Most laws abroad have been expanded and restrictions loosened.

The 2002 law in the Netherlands refers to ending ‘unbearable suffering’. However, the legalisation of euthanasia in the Netherlands “has contributed to a normalization of physician-assisted dying and… an expansion of its practice”.[7]

This expansion has involved acts of euthanasia that many would regard as abuses: the expansion of euthanasia from 12-year-old children to severely disabled new-born children[8];  and an expansion from voluntary euthanasia to non-voluntary euthanasia, particularly in cases of dementia where patients are incapable of giving consent[9] and chronic psychiatric patients, from 0 cases in 2009 to 60 cases in 2016[10].

Sign saying Danger Slippery slopes keep away.

Canada introduced assisted suicide legislation in December 2015. The Canadian Government now proposes that from March 2023 patients with mental illness alone and no other underlying issues can be given medical assistance to die.

Within six years the scope of the assisted suicide legislation in Canada has been amended twice. More people are now eligible and protections weakened.

A study in Belgium found that in only half the cases in Flanders were doctors assisting suicide reporting the death to a review committee as required by the law.[11] Around14% said they didn’t report a case either because they suspected the legal requirements had not been met, or they feared possible legal consequences.

Conclusion

Baroness Meacher’s bill addresses the needs of a small proportion of the population. And the cost is too high. The provisions of the bill, with their inadequate safeguards, open the door to dangers for disabled people which may literally prove fatal.

We don’t believe any parliamentarian will be able to put their hand on their heart and say ‘no disabled people will die because this bill is robust and fully protects everyone from any type of pressure or mistake’.

References

1 Hoffenberg R. Assisted dying. Clin Med 2006672–74. [PMC free article] [PubMed] [Google Scholar]

2 Oregon Health Authority Public Health Division, Center for Health Statistics Date written February 25, 2020

3 First Annual Report on MEDICAL ASSISTANCE IN DYING IN CANADA 2019

4 PMC Journal- A Systematic Review of Predictions of Survival in Palliative Care https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4999179/

[5] First Annual Report on Medical Assistance in Dying in Canada 2019

[6] BMA Survey on Physician-Assisted Dying 2020

[7] Koopman J and Boer, T, “Turning Points in the Conception and Regulation of Physician-Assisted Dying in the Netherlands”, American Journal of Medicine Vol 129, No 8, August 2016[7]

[8] https://www.proquest.com/openview/2f5f978f061e5f38e3bf34c2b4e06d50/1?pq-origsite=gscholar&cbl=47659

[9] BMC Medical Ethics https://bmcmedethics.biomedcentral.com/articles/10.1186/s12910-019-0401-y

[10] BMC Psychiatry https://bmcpsychiatry.biomedcentral.com/articles/10.1186/s12888-017-1369-0

[11] Reporting of euthanasia in medical practice in Flanders, Belgium: a cross-sectional analysis of reported and unreported casesBMJ 2010; 341 doihttps://doi.org/10.1136/bmj.c5174 (Published 05 October 2010)

Categories
Assisted dying assisted suicide Disability Meacher Bill

APPG on Dying Well Thursday 15 July – 5pm – Meeting in Parliament (online)

Dear Colleague,

The All-Party Parliamentary Group (APPG) on Dying Well promotes access to excellent palliative care and/ stands against the legalisation of assisted suicide in the UK.

I am delighted to invite you to our next online meeting on the 15th July at 5pm. This is an unmissable event and first of its kind, which will be of interest to parliamentarians with a range of expertise. Especially those with interests in science and technology, medical innovation, mechanical engineering, human ethics and philosophy.

Three presenters, all of whom are disabled, will consider Baroness Meacher’s Assisted Dying Private Members Bill from very different perspectives and viewpoints. Each presenter will test the arguments for a change in the current law and whether the proposed legislation stands up to rigorous public safety standards.

Dr Peter Scott Morgan

http://www.scott-morgan.com/blog/right-to-thrive/faqs-about-right-to-thrive/. Peter is the world’s leading robotics and AI scientist who was diagnosed with the severest form of MND ALS and given 2 years to live. 4 years later, Peter will show-case his new inventions and solutions which challenge commonly held beliefs regarding terminal Illness. Amongst them he will demonstrate a sophisticated avatar, which has given him his voice and expression back, having lost this capability a year ago when he became motionless as a result of MND. His work is gaining great traction globally as a result of his recent book, documentary and 2020 launch of the Scott Morgan Foundation: https://www.scottmorganfoundation.org/our-story.

Dr Mario  Griffiths https://en.wikipedia.org/wiki/Miro_Griffiths. Miro is a Leverhulme Research Fellow at the University of Leeds, who has published on disability policy and politics, and is invited regularly to comment on current social issues. He is a member of the Disability Advisory Committee at the Equality and Human Rights Commission, and advises the UK Department of Health and Social Care on improving disabled people’s access to health and social care provision. He is a former strategic and confidential adviser to the UK Government and European Commission. Miro has Spinal Muscular Atrophy, which is a progressive condition that causes muscle strength deterioration throughout the body.

Philip Friend OBE Hon DSc

https://philfriend.co.uk/. Phil contracted polio as a child and is a wheelchair user. He is acknowledged as one of the UK’s foremost consultant on disability matters. He has worked on disability and diversity projects in Estonia, Romania, Poland, Germany, Canada and the USA. He was awarded an OBE in 2001 for services to equal opportunities and disabled people and made an honorary Doctor of Science (Hon DSc) in 2009 in recognition of his outstanding contribution to equality and diversity from University of Hertfordshire. He is the current chair of the Research Institute for Disabled Consumers and Vice Chair of the Activity Alliance.

Baroness Campbell of Surbiton http://baronesscampbellofsurbiton.uk/. Baroness Campbell of Surbiton is a Cross Bench Peer and Founder of Not Dead Yet UK (NDYUK) www.notdeadyetuk.org. NDYUK is the leading organization of disabled people and those with a diagnosed progressive and terminal medical conditions campaigning against a change in the law on Assisted Suicide.

Please email sophiej.clarke@parliament.uk and you will be sent joining instructions for the meeting.

Yours,

Danny Kruger MP