MDMD

MPs are increasingly backing an inquiry into assisted dying. In a debate in Westminster Hall, 31 MPs spoke during the debate in a packed room, with an inspiring 20 in favour of assisted dying. Seven different MPs from all parties called for an inquiry into assisted dying. 

My Death, My Decision has long pushed for an inquiry. Last year we organised the largest parliamentary joint-statement ever in support of an assisted dying inquiry. 50+ MPs and peers – from across the political spectrum, including some previously opposed to assisted dying reform – signed our statement calling for an inquiry into the law. We have organised open letters, bringing together the claimants and families of most of the past assisted dying cases, and 34 doctors, politicians, religious leaders, academics, and campaigners in support of an inquiry.

Alicia Kearns, Conservative MP for Rutland and Melton brought up the case of our friend and her constituent Phil Newby, who has advanced motor neurone disease.  Phil went to the High Court and asked it to make a judgment about assisted dying. Kearns called for a meaningful debate and vote on to allow the people of Britain to have their say on assisted dying.

Paul Bloomfield, Labour MP for Sheffield Central , spoke beautifully about his personal experience of the existing law and recognised “the pain it causes, and the way it forces so many into desperate and premature deaths.” 

Laura Trott, Conservative MP for Sevenoaks highlighted the case of our member Dawn-Voice Cooper, who had an assisted death in Switzerland last year. Trott said:

[Dawn] came to see me in a surgery before she died, and it was one of those surgeries, which all Members in this room will have had, that will stay with me forever. Dawn suffered from a long-term, degenerative and incurable medical condition. By her mid-30s it was affecting all her joints, including her neck and spine. 

Let us be clear: Dawn had that choice [of an assisted death in Switzerland] because she had money. Other people do not. I am immensely proud that the UK is a fair and compassionate society, but we must now uphold those values. As overseas evidence continues to grow, our own reasons not to legislate in some form are becoming less and less convincing. To use Dawn’s own words,“There is no escaping death. And as things are in the UK at the moment; there is no escaping pain, lack of dignity and total deterioration in life.”

Trevor Moore, Chair of My Death My Decision, said: 

Finally, the mood at Westminster in favour of an inquiry into assisted dying is changing. For too long MPs have ducked the issue, despite overwhelming support among the public. An inquiry will enable them to make an informed decision, hearing and testing evidence from around the world where assisted dying is already permitted. 

We know that the alarmist statements of opponents do not stand up scrutiny, because other countries have shown that. The time for politicians to do the right thing is approaching fast. We welcome that.

Assisted dying will be debated in Westminster Hall on the 4th July at 4.30pm. Since Parliament last considered assisted dying in 2015, around 250 million more people around the world have the right to choose an assisted death – a total of over 360 million worldwide. However, today’s debate will not lead to any binding votes or legislation.

The debate was organised following a petition to ‘legalise assisted dying for terminally ill, mentally competent adults’ which gained over 150,000 signatures. The petition said ‘The Government should bring forward legislation to allow assisted dying for adults who are terminally ill and have mental capacity.’

Assisted dying legislation should not be restricted to just the terminally ill. People who are unbearably, incurably suffering, such as Paul Lamb, should also have the right to a dignified, compassionate death on their own terms.  

Baroness Meacher’s Assisted Dying Bill fell after the committee stage in the House of Lords and there is not expected to be any assisted dying bill in this parliamentary session. A recent ONS study revealed that serious health conditions more than double the suicide rate, further showing the need for a compassionate, safeguarded assisted dying law.

Trevor Moore, Chair of My Death My Decision, said:

This Westminster Hall debate is a welcome opportunity for MPs to hear why we need a compassionate assisted dying law for England & Wales – following in the footsteps of Scotland and Jersey, where laws are expected soon. But debate is not enough. 

On the one hand the government says that assisted dying is an issue of conscience and so not government business, while on the other it refuses to set up a parliamentary inquiry or any other initiative to allow politicians to make an informed decision. That is tantamount to opposition, which is out of kilter with the around 90% of the public who support having a law. The time for change is now.

In a great victory for campaigners, an assisted dying bill has been introduced by Dr Alex Allinson in the Isle of Man today. Members of the island’s parliament voted 22 to 2 for the Bill to be introduced. We have supported our friends “Let Me Choose”, a grassroots organisation in the Isle of Man who have been pushing for a compassionate assisted dying law. We have partnered with Let Me Choose through the assisted dying coalition.

The Bill would allow terminally ill, mentally competent adults the choice of an assisted death. A Citizen’s Jury in Jersey voted for a broader bill that would include the incurably and intolerably suffering. In December 2021, Jersey’s States Assembly voted to support assisted dying ‘in principle’.

A public consultation in the Isle of Man is expected to be held over the summer and a draft bill should be available by the end of the year. This will then be reviewed by a committee of the Tynwald (Isle of Man’s parliament).

Trevor Moore, Chair of My Death, My Decision, said:

“With Jersey, Isle of Man and Scotland having now taken significant steps on the road to an assisted dying law in their jurisdictions, Parliament at Westminster is lagging woefully behind. We know that public opinion is overwhelmingly in favour of a compassionate law for England and Wales, which is why we continue to call for an inquiry. That way, politicians can hear and scrutinise the evidence brought forward from all sides of the debate.

Our current laws are broken, protracting the suffering of the terminally ill and those with painful and incurable conditions. We call upon Parliament to do the right thing and give people the choice to end their intolerable suffering when they decide.”

Notes:

For any more information or comment please contact My Death, My Decision at: campaigns@mydeath-mydecision.org.uk.

Read more about My Death, My Decision’s campaign for an inclusive change in the law: https://www.mydeath-mydecision.org.uk/

My Death, My Decision is a grassroots non-profit organisation that campaigns for a balanced and compassionate approach to assisted dying in England and Wales. As a growing movement, we are at the forefront of social change: nearly 90% of the public now favours a change in the law to allow adults of sound mind, who are either terminally ill or facing incurable suffering, the option of a peaceful, painless, and dignified death.

Baroness Meacher’s Assisted Dying Bill has failed. This leaves the frustrating prospect of no debates, votes or upcoming legislation in parliament on assisted dying. A recent ONS study revealed that serious health conditions more than double the suicide rate, further showing the need for a compassionate, safeguarded assisted dying law.

The assisted dying bill in the House of Lords has fallen because the Government would not allow parliamentary time to debate it. The bill received over 200 amendments at the Committee Stage, and as it will not be included in the next parliamentary session the bill automatically falls. My Death, My Decision, along with Humanist UK, submitted an amendment calling for the creation of an inquiry into the impact of this proposed assisted dying legislation for people who are of sound mind and not terminally ill but suffering intolerably with an irreversible physical condition.

The Government claims to take a neutral position on assisted dying, but simultaneously refuses to give enough time for this important issue to be debated and voted on. This is a de-facto opposition to assisted dying and keeps our broken law in place.

An assisted dying inquiry would equip parliamentarians with the necessary knowledge to conduct an informed debate and vote on this important issue. The clear majority of the public wants a compassionate assisted dying law and for the government to respect their autonomy.

Trevor Moore, Chair of My Death, My Decision, said:

“The failure of the Meacher Bill is a reflection of the government’s refusal to engage with the critical social justice issue of assisted dying. If the government will not introduce legislation in Parliament, we call upon it instead to establish a parliamentary inquiry and implement its recommendations. That way, it can remain neutral.

An inquiry would enable expert evidence to be heard from other countries that have assisted dying, providing also the opportunity to test the often alarmist claims of opponents. With multiple jurisdictions now considering or about to implement an assisted dying law, England and Wales is being left behind. This needs to be remedied without delay, because inaction protracts unnecessary suffering.”

Notes:

For any more information or comment please contact My Death, My Decision at: campaigns@mydeath-mydecision.org.uk.

Read more about My Death, My Decision’s campaign for an inclusive change in the law: https://www.mydeath-mydecision.org.uk/

My Death, My Decision is a grassroots non-profit organisation that campaigns for a balanced and compassionate approach to assisted dying in England and Wales. As a growing movement, we are at the forefront of social change: nearly 90% of the public now favours a change in the law to allow adults of sound mind, who are either terminally ill or facing incurable suffering, the option of a peaceful, painless, and dignified death.

My Death, My Decision’s Clinical Advisory Group is pleased to welcome new co-chair, Graham Winyard CBE, who will lead the group alongside its founder, Colin Brewer.

Graham Winyard CBE:

Graham Winyard retired in 2007 from a career in medical management and public health that included 6 years as Medical Director of the NHS. His interest in assisted dying followed the death of his first wife, Sandy, from cancer aged 51. He became a founding member of Healthcare Professionals for Assisted Dying and was a member of the Board of Dignity in Dying for three years. In retirement he served for 10 years as lay treasurer of Chithurst Buddhist Monastery, and completed a Masters in Religions at SOAS. He has lived in Winchester, where his three children went to school, since 1990, and is happily re-married to Jill, enjoying being an active Granddad and stepfather. In recent years he became a Home-Start volunteer and local trustee, and mentors disadvantaged pupils at a local sixth form college, who aspire to read medicine at Oxbridge.

Commenting on the importance of the Clinical Advisory Group, Graham says:

“I see the role of the Clinical Advisory Group as ensuring that MDMD’s campaigns are medically credible and sensitive to the range of reasons for medical reluctance around assisted dying.  A key aim should be to highlight the crucial differences between MDMD’s approach to assisted dying and that proposed in recent unsuccessful assisted dying Bills, and the consequences to patients of such over-restrictive approaches.”

About the Medical Group

The Clinical Advisory Group was founded as a subgroup within My Death, My Decision to advise on clinical matters and to represent medics who support assisted dying reform. Membership is free and open to any professional with relevant clinical or academic experience, whether you are practising, studying or retired.

If you would like to join the Clinical Advisory Group, please complete this form on our website. If you would like to discuss the aims of the Clinical Advisory Group please then contact Colin Brewer at colin.brewer@mydeath-mydecision.org.uk.

I must start with a declaration of interest. I have advanced prostate cancer. I am currently in remission. I have operated on hundreds of  men who were becoming paralysed from prostatic  metastases in the spine, so I am what you might call an informed consumer.

Surgery only postpones paralysis in most cases – many of my patients would eventually have died bed bound, paralysed and doubly incontinent. This quite probably – though not inevitably – will be my fate. Metastatic disease in the bones can be very painful, but this possibility troubles me less than the loss of autonomy and dignity that comes with irreversible paralysis leading to death. Pain can be treated – although it should be remembered that the treatment can have very distressing side effects.  I accept that I might not opt for Assisted Dying (AD) in the event, were it to be available, but don’t we all want, if possible, to die peacefully, ideally in our own bed, surrounded by our family, without prolonged indignity and suffering beforehand? Legalizing AD is simply about fulfilling this fundamental human wish. It is also, after all, the aim of all palliative care.  Why are a small number of people so implacably opposed to AD, when opinion polls in the UK show an overwhelming majority in favour of it?

The opponents to AD produce little, if any, convincing evidence to justify their opposition. We might reply, quoting Bertrand Russell, that if you produce no evidence in support of your argument, we don’t need to produce any evidence to disagree with you. But it is important to understand that there is now evidence about how AD works in practice, as it has been legalized in so many countries.  As John Maynard Keynes is said to have asked: “When the facts change, I change my mind. What do you do?” 

I am not going to spend time going over the arguments in favour of AD in any detail as I want to concentrate on the arguments against it, but would make two points:

Firstly: There is what the lawyers call an a priori case for AD – suicide is not against the law, so you must produce good reasons as to why it should be illegal to help somebody do something that is not illegal.  It is worth pointing out that there is all the difference between assisting suicide for somebody who has made a considered request for it, and actively encouraging it. The 1961 Suicide Act, absurdly, fails to recognize this difference. The Serious Crime Act of 2015 has no problem with recognizing coercive behaviour in other areas of life. Encouraging suicide could easily be legislated against.

Secondly: There is clear evidence that there is an unmet demand for AD in this country despite good palliative care, as is shown by the fact that many people (who can afford it) go to Switzerland for an assisted death. The book Last Rights, produced by Dignity in Dying, has many stories of people suffering dreadful deaths despite good palliative care. Besides, as I argued earlier, the loss of autonomy and dignity that dying can so often involve is the commonest reason for opting for AD in surveys of people who have asked for it, rather than just “physical” suffering.

The UK Association of Palliative Medicine is implacably opposed to AD, but it is curious that in the increasing number of jurisdictions where AD is legal, most palliative care doctors have no problem with it. In none of these jurisdictions has there been any move to reverse the legislation – which suggests it is working well.

In most jurisdictions allowing AD, the people opting for it do not fall into “vulnerable” categories ( ie. poor, disabled, socially isolated or depressed, and without good palliative care available to them). The uptake of AD varies from country to country – but the numbers are small.  For instance, in the Netherlands,  about 4% of deaths are assisted, in the state of Oregon in the USA about 0.3%. Different jurisdictions have different criteria for permitting AD, different ways of administering it and different safeguards. The essential feature of the safeguards is to identify coercion, depression and lack of palliative care, and to establish that the patient has mental capacity. All jurisdictions impose a delay and time for patients to change their minds, before any request for AD is granted.

Given the a priori argument, and the evidence that a small, but significant number of people in the UK would opt for AD if it was legalized, why should their wishes be refused? 

The arguments against AD are principally that  people other than those who might currently  request it will suffer if it is permitted. These seemingly pragmatic arguments are used as a smokescreen for a deeper objection to AD as a matter of principle, rather than of practice. The aim is to sow doubt, which is something you do when you have little evidence, or the evidence is against you.

There are several “practical” arguments against AD:

1. It will be abused, with people being coerced or pressurised into killing themselves.
2.  It will be a “slippery slope”, making it too easy for “vulnerable” people to kill themselves. It is important, in other words, that suicide remains a difficult and distressing business for all concerned. (It is worth noting the recent ONS Survey that showed that people with non-survivable cancers have a suicide rate 2.6 times higher than matched controls). AD will become a cheap substitute for proper palliative care. Vulnerable people will be made to feel a burden and will kill themselves. There is a glib sound bite for this: “Right to die will become duty to die”.
3. It will be impossible to design safeguards that will prevent these problems with any certainty.
4. I will not waste time on certain opponents who are on record as invoking the shades of  Dr Mengele and Harold Shipman, or who claim that emotions are more important than rationality. AD is about patient autonomy, not about licensing doctors to kill patients, nor is it about paternalistic doctors knowing better than their patients as to what is in their best interests.

In England we are entitled to refuse lifesaving treatment, provided we have mental capacity. If there is a risk of coercion with AD, why is there no evidence that vulnerable people are being coerced into refusing treatment at the moment – to clear a hospital bed, for instance, or because relatives are eyeing up the family silver? Nor is there any evidence that significant abuse and coercion are taking place in jurisdictions where AD is permitted. The safeguards prevent it. Likewise, it is legal in the UK to administer “terminal sedation” if a dying patient is suffering intractably, even though the sedation will hasten death, on the grounds that the intent is to treat suffering and not to kill the patient. I am told that in modern palliative care if this is used, it is only after discussion with the patient and family, who make the final decision. In which case, you might ask, why cannot the patient ask for a quick end ( i.e. AD), rather than a slow one?

 There is no evidence that “right to die will become duty to die”. AD is not resulting in queues of people asking for it because they feel they have become a burden.  What is clear is that the current legal situation in the UK means that no right to die is a duty to suffer. 

There is no evidence that AD has resulted in declining levels of palliative care – AD should be seen as complementary to palliative care, and not in opposition to it.

All medicine is about making decisions in the face of uncertainty, using evidence to balance risks against benefits. We can never be entirely certain. None of the arguments against AD are being borne out in practice. The “slippery slope” is a deeply discriminatory argument that prioritises a small, hypothetical group of patients against a much greater number of real people whose suffering in their final illness could be lessened if their freely made request for AD was granted. Medicine is about preventing suffering as well as about prolonging life.

Medicine is all about evidence – surely the rational solution to the AD problem is to review the evidence and then legislate to permit it, subject to safeguards. As with any medical treatment, the evidence should be carefully collected and analysed, and the legislation changed accordingly if necessary.

The opponents to AH should be challenged to answer two key questions:

1. Are there any safeguards which in your opinion would make AD acceptable?
2. Given the strength of feelings on both sides of the argument, would you support an Official Inquiry ( for instance by the House of Commons Health and Social Welfare Committee ) into the matter?

I have little doubt that Assisted Dying will eventually be permitted in England – the evidence in its favour is so strong. I just hope that it is in time for me.

This script is a condensed version of Dr Henry Marsh’s speech at the Doran Lecture, 24th April 2022.

In his talk, Dr Marsh makes reference to a piece written by Professor Katherine Sleeman in which he said she mentioned having examined the cases of three people who went to Dignitas. What she in fact wrote (BMJ Blog 08/03/2018) was:

“I have spoken to families who have taken loved ones to Dignitas in Switzerland, and I have not doubted that this was the right, and carefully arrived at, decision for them. But we must separate the question of whether assisted dying is morally acceptable from the question of whether (and how) it should be legalised.”

Dr Marsh apologises for misquoting.

A diagnosis of a serious health condition is associated with an considerably elevated rate of suicide according to new data released by the Office of National Statistics (ONS). Almost 1,000 people with lung and heart conditions died by suicide in England between 2017 and 2020. We join Humanists UK, a fellow member of the Assisted Dying Coalition, in calling for a compassionate assisted dying law in order to introduce much-needed safeguards and support for people who are incurably suffering and terminally ill.

The study found that patients with Huntingtons and Motor Neurone Disease were considerably more likely to die by suicide. One year after a diagnosis of these degenerative neurological conditions, the suicide rate for patients was 107.7 deaths per 100,000 people. The suicide rate for an equivalent control population was 0 per 100,000 people.

People who travelled abroad for the purpose of assisted dying would not appear in the ONS data.

Chair of My Death, My Decision, Trevor Moore comments:

“The latest data from the ONS on comparative suicide rates provides yet more evidence to show how our current prohibition on assisted dying must be removed. Far from offering protection, our laws protract unnecessary suffering and cause the vulnerable to take matters into their own hands. This is not only a lonely and harrowing experience for the person involved, it often has life-changing consequences for those they leave behind.

That is why My Death, My Decision campaigns for a compassionate assisted dying law for both the terminally ill and the incurably suffering that would enable people to have control over the end of their lives. We campaign to ensure any law would set out strong safeguards to mitigate the risks to the vulnerable, far more regulated than existing situations in which end of life decisions can be made. Then a person seeking an assisted death can plan a peaceful end to their life when, where and with whom they wish.

We call upon the Justice Secretary to instigate a public inquiry on assisted dying without any further delay.”

Notes:

For any more information or comment please contact My Death, My Decision at: campaigns@mydeath-mydecision.org.uk.

Read more about My Death, My Decision’s campaign for an inclusive change in the law: https://www.mydeath-mydecision.org.uk/

My Death, My Decision is a grassroots non-profit organisation that campaigns for a balanced and compassionate approach to assisted dying in England and Wales. As a growing movement, we are at the forefront of social change: nearly 90% of the public now favours a change in the law to allow adults of sound mind, who are either terminally ill or facing incurable suffering, the option of a peaceful, painless, and dignified death.