17 People a Day Will Suffer As They Die

Dignity in Dying have published a hard-hitting report on how unpleasant the realities of dying in the UK today can be for some people. The report ‘The Inescapable Truth. How seventeen people a day will suffer as they die‘ is available in full as a 92 page PDF file here. It is also available in web summary form here.

It is an important and useful piece of work. All too often the images portrayed of people receiving palliative care are those in the relatively early stages, when care is obviously serving them well. Rarely do we get a glimpse of the situation closer to the end of life, where for some, suffering cannot be effectively controlled, even by the best palliative care. Instead, information is shared anecdotally by those who have been shocked by what they have seen their own relatives having to experience. The report attempts to redress the balance with an assessment of how much intolerable suffering is experienced at the end of life.

The report opens with an introduction by Nick Boles MP who says “The experiences shared in this report are as harrowing as anything I have encountered as a Member of Parliament. I have had two bouts of cancer and am no stranger to the nastiness of the disease and its treatments, but nothing prepared me for the horror of what is described here.” He continues: “Those who oppose a change in the law point to the fact that palliative care works for the vast majority of people approaching the end of life. That is no consolation to the people for whom it does not. It is shocking to think Parliament could ever be content with a policy that has such disastrous consequences for so many people.”

The report is careful to position itself in full support of palliative care as far as palliation is possible. MDMD, like Dignity in Dying, recognise and fully support the excellent work done by those working in palliative care to do what they can to help people have an acceptable quality of life for as long as possible. The problems come when a tolerable quality of life, as perceived by the person who has to live it, is impossible. For many people, that stage is never reached, they die naturally without suffering unacceptably. But for the few who have to suffer, against their will, with no alternative of a medically assisted death, the situation can be horrific. Further, the fear of a future possibly horrific situation from which they will have no escape, will negatively impact a person’s perceived quality of life, possibly to the point of it being unacceptable. The option of a medically assisted death, even if they never find they need it, would largely eliminate this fear.

The figure of 17 people every day suffering from pain is the finding of research done by the Office of Health Economics (OHE), commissioned by Dignity in Dying. The OHE report can be found here. Their source data was for England in 2017/18 and extrapolated to the whole UK to obtain the 17 people a day figure. Looking into the source data more closely reveals some important points:

  • The figure of 17 people per day is extrapolated from the current data to the situation where everyone has excellent palliative care who needs it. Currently OHE estimate that 75% of dying people require palliative care, but only 55% of dying people get it. An estimated 20% of dying people need palliative care but don’t get it. An example of this is given in a recent story in the Guardian. This unmet need is something that people on all sides of the right-to-die debate agree needs to be fixed. Because of the unmet palliative care need, the actual figure for people suffering as they die is currently higher than 17 people per day, but would be reduced to 17 if palliative care was provided for all who need it.
  • The figure of 17 people per day is for those who have “no pain relief at all“. The figure rises to 167 per day, almost 10x, for those who have “partial or no pain relief“.
  • These figures are small in percentage terms. People in the “no pain relief at all” category account for 1% of all deaths. The “partial or no pain relief” category accounts for 10% of all deaths. So with available palliative care 90% of deaths would be pain free with the help of effective pain relief when necessary.
  • The OHE study was confined to assessment of “pain”. Those who end their life with a “perceived quality of life falling permanently below the level they are able to accept”, the much broader criterion MDMD use in our objective, will be much higher as unrelievable pain is only one reason why a person’s quality of life might be permanently below the level they are able to accept. (Other reasons could include loss of dignity for example.)

The Dignity in Dying report spends much time giving a qualitative impression of the suffering various people have to contend with at the end of life through the quotes of dying people, their relatives and healthcare workers, including palliative care doctors. These touch on many of the aspects beyond “pain” itself. One of the more harrowing examples is a quote from an unnamed palliative care consultant: “One of the most distressed patients I have ever seen in my life was a man who had had a penile cancer. His penis had been removed and he was left with a big open hole directly into his bladder. He was a very gentle person. He was so ashamed and he would cry. He was begging to have his life ended because he just hated it and he had lived for months in that condition. He was begging to have his life ended because it had absolutely no meaning. He was also in pain, but that was not the main thing; it was the utter degradation. I felt so helpless. We could do nothing about that.

In examining current end-of-life medical practices, the report usefully highlights the important inconsistency in the concern many of those opposed to a change in the law raise – the risk of vulnerable people being coerced into requesting an assisted death. The current law allows people to refuse life sustaining treatment, thereby hastening their death.  Indeed, the current right to refuse life-sustaining treatment is argued by some, such as palliative care consultant Baroness Ilora Finlay, to be a reason for not changing the law. However, there is exactly the same risk of vulnerable people being coerced into refusing life-sustaining treatment as there is in their being coerced into requesting an assisted death, were that option available. The principle difference is that with medically assisted dying the death will be quicker and painless, so likely to be a more attractive option to the patient. The report points out that “the Association for Palliative Medicine’s specialist guidance states it is the responsibility of doctors to validate the person’s decision [to refuse life-sustaining treatment] by ensuring that it is the ‘settled view of the patient,’ ‘that there is no coercion’ and that the patient has capacity to make the decision.” If palliative care good practice can handle the risk of coercion safely enough in the case of someone refusing treatment, why is this raised as an objection to changing the law on assisted dying? The right-to-die community should do much more to publicise and explain this inconsistency as it demonstrates that there are already mechanisms deemed safe enough to address the concern over possible coercion of vulnerable people. This concern is used as the primary objection to a careful relaxation the assisted suicide law to permit medical assistance to die, when requested by a mentally competent person who is suffering incurably and intolerably.

The Dignity in Dying report is highly valuable as far as it goes, however, the true situation is actually much worse than it portrays, as the report fails to consider those who are suffering incurably and unacceptably but who are not close to dying. This includes people suffering from dementia for example, which is the leading cause of death in England and Wales, responsible for 1 in 8 deaths and almost 1 in 4 for women over 80. In the early and mid stages of dementia the sufferer may be aware of the gradual annihilation of the person they are – something some people find completely unacceptable, people like Alex Pandolfo for example.  Similarly it excludes those suffering intolerably from non-terminal but incurable illnesses, people like Omid T, who suffered from Multiple Systems Atrophy and ended his life with medical assistance in Switzerland; Tony Nicklinson, who had locked-in syndrome and ended his life by refusing food after his legal case failed; and Debbie Purdy who suffered from Primary Progressive MS and died by stopping eating and drinking.) Dignity in Dying does not campaign for a change in law which would help such people, whereas MDMD does.

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Two more bad deaths show how the current law is failing

Two recent news stories concerning suicide inquests demonstrate again how the current assisted suicide law prevents people who are incurably suffering having the peaceful death they would choose.

Reports in the Mirror and the Guardian cover the inquest into the death of Ralph Snell, 94, who took a mix of morphine and sleeping pills to deliberately end his life due to severe back pain and insomnia resulting from osteoporosis. The Mirror reports that he had previously tried to electrocute himself with a phone charger.  His wife and son were arrested on suspicion of assisting suicide as they were with Mr Snell when he died. They were later released without charge.

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

It is a disgrace that our archaic law treated a loving family as if they were criminals for nothing more than simply saying goodbye.

A second case, reported in the Daily Post, describes the suicide of Pauline Owen, 67, who suffered from terminal breast cancer which she had been living with for 3 years. She drowned in a canal in North Wales. She had no close relatives. The paper reports that her suicide note explained that she had refused cancer treatment and had planned to take her own life once the illness got out of control. She apologised to those who would discover the note, but blamed “successive governments” for not allowing people to end their own lives in a “controlled and dignified manner”.

The cases highlight many failings in the current law including:

  • Doctors (and others) are unable to hold meaningful discussions with patients about how they could safely and painlessly end their lives. Such conversations are an opportunity to ensure that all possible palliative alternatives had been fully explored before any decision is made about the person ending their life. In this respect, the doctor/patient relationship is currently broken – at a time when it is needed most. Evidence from countries that have assisted dying legislation suggests that, in some cases, simply having the knowledge that help to end their life will be available when absolutely necessary is sufficient for some people to choose to continue living until a natural, peaceful death arrives.
  • Legal access to lethal medication which can reliably cause a peaceful, painless death is highly dependent on the nature of the illness, the situation and the attitude of the doctor. In Mr Snell’s case, medication to control his pain and insomnia was available which proved lethal in excess quantity. However, without professional advice this approach is dangerous as it could lead to a failed suicide, leaving the person in a worse condition. In contrast, Ms Owen appeared not to have that option, so felt compelled to take a much more drastic approach.
  • Caring relatives are put in a very difficult situation – wanting to do the best for the person suffering, but risking arrest and investigation which can take a long time and adds a lot of unnecessary stress at a time of loss and grieving.
  • Those who feel they have no option but to end their lives by using violent methods, or in public places, cause distress to the unlucky person who discovers their body. Ms Owen was fully aware of this and apologised in advance for the distress she knew she would cause to someone – possibly a child. How desperate must she have felt to take this action?
  • People like Ms Owen are taking their lives while they still can, knowing that if they leave it too late nobody else will be able to help them. In many cases, with the right care and with the option of a medically assisted death, they would choose to live longer, possibly until death occurs naturally.
  • Refusal of life sustaining treatment was not an acceptable option in either of these cases. Refusal of treatment is something that is legal and is sometimes used by opponents of a change in the assisted dying law as a reason why the current law does not need changing. This argument was used by Baroness Finlay, in her talk at Bristol University and in evidence in the Noel Conway legal challenge. Cases like these show the weakness of this argument.
  • Organisations like MDMD cannot legally offer advice on best methods to end life. We get many requests from desperate people seeking such advice, but as a campaign organisation that works within the UK law, we are unable to offer advice to people who really need careful professional counselling, nor do we have the relevant skills. Those who are suffering intolerably and incurably need support that is relevant to them and their choices – that can only happen when the law changes.

It is hard to obtain reliable data on how many people choose to end their life due to incurable and intolerable suffering, like the two cases reported here. Research by the Assisted Dying Coalition finds that more than one person per week from the UK has an assisted death in Switzerland and that around 1500 UK citizens are currently members of one of the Swiss organisations which offer Assisted Dying to non-Swiss citizens. Research by Dignity in Dying estimates approximately 300 suicides per year by terminally ill people in England. This excludes those like Ralph Snell and Sir Nicholas Wall who were not “terminally ill“. The true figure for the whole UK will therefore be considerably in excess of 350 people per year. How many more people would like the option of a medically assisted death towards the end of their life? Judging by our opinion poll, up to 93%.

What you can do to help our campaign:

  • Please support us! Become a member and make a financial donation.
  • Spread the word to others and encourage them to join us too. Articles on this website aim to raise awareness of the complex issues involved.
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Open Letter to the Secretary of State for Justice

To mark the tenth anniversary of Debbie Purdy’s landmark assisted dying case, which resulted in the current Director of Public Prosecutions (DPP) guidelines on the Assisted Suicide law, My Death, My Decision has published an open letter to the incoming Secretary of State for Justice, Rt Hon Robert Buckland QC MP,  calling for a review into the working of the Assisted Suicide law in England and Wales. The Guardian published the letter on the anniversary date of 30th July. The call follows a recent parliamentary debate on the issue in which MPs made a similar call.

The full text of the letter is available here. The list of signatories is diverse and impressive, indicating the range of support MDMD has for its position and its growing influence. In addition to MDMD Chair Trevor Moore, the signatories include:

Medical Professionals:
Sir Iain Chalmers – Founder of the Cochrane Collaboration and acting coordinator of the James Lind Initiative
Dr Phil Hammond – Physician, Broadcaster, Comedian and Commentator
Dr Michael Irwin – Former Medical Director United Nations
Dr Henry Marsh – Physician and Author
Professor David Nutt – President of the European Brain Council
Professor Wendy Savage – General Medical Council and British Medical Association’s Ethics Committee Member
other members of MDMD’s Medical Group.

Philosophers:
Dr Julian Baggini – Philosopher, Journalist, and co-founder of the Philosophers’ Magazine
Professor A.C Grayling – Philosopher, Journalist, and founder of the New College of Humanities

Church Leaders:
Rev’d Canon Rosie Harper – Canon of Christ Church, Vicar of Great Missenden, Chaplain to the Bishop of Buckingham and member of the General Synod.
Rev’d Scott McKenna – Minister Mayfield Salisbury Church

Legal:
Professor Emily Jackson – UK Legal Scholar

Media:
Virginia Ironside – Journalist
Polly Toynbee – Journalist and Author
Andi Reiss – Independent film maker who made the documentary ‘Endgame‘.

Campaigners:
Andrew Copson – Chief Executive Humanists UK (Humanists UK is MDMD’s Assisted Dying Coalition Partner Organisation in England and Wales)
Paul Lamb – Currently bringing an Assisted Dying Court case.
Phil Newby – Currently bringing an Assisted Dying Court case.
Jane and Lauren Nicklinson – Assisted Dying Campaigners (Widow and Daughter of  Tony Nicklinson who brought an Assisted Dying Court Case)
Omar Puente – Assisted Dying Campaigner (Widower of Debbie Purdy)
MDMD supporters who have accompanied a relative to Switzerland for a medically assisted death that would not be permissible under a law limited to those with a life expectancy of 6 months or less, (as is the case in Oregon and which was rejected by the UK parliament in September 2015).

Other MDMD Patrons not included above:
Miriam Margolyes – Actor
Lord Martin Rees – Cross-bencher House of Lords

MDMD are most grateful to all signatories in coming together to support this call.

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Government to review “Terminal Illness” definition

The common understanding of the term “terminal illness” is ‘a disease or condition which can’t be cured and is likely to lead to someone’s death.’ This can apply to advanced cancer, dementia (including Alzheimer’s), motor neurone disease (MND/ALS), advanced heart disease and many other illnesses.

However, the term is used in a more restrictive sense in some situations. In England and Wales someone with six months or less to live can claim benefits under Special Rules for Terminal Illness, entitling them to fast-track access and the highest rate of payment for several benefits.

A report from the All Party Parliamentary Group (APPG) for Terminal Illness shows severe problems with the approach of trying to put a life-expectancy time limit on the definition of “terminal illness”. The report cites:

  • ‘In 1990 [when the definition was introduced into UK law], many terminally ill people were unlikely to survive for six months after receiving a terminal diagnosis – today, advances in treatment and diagnosis mean that many more people are living with terminal illness for longer.’
  • ‘The six-month rule also wrongly assumes that life expectancy can always be accurately predicted. It is very challenging for clinicians to estimate how long someone has left to live’
  • ‘Clinicians’ interpretations of the law also vary significantly, and many believe they will be held accountable if their prediction turns out to be wrong’
  • ‘The assumption that people with terminal illnesses will need support only for a matter of months until they die is outdated and does not reflect the modern reality of many terminal conditions, where people can live and need ongoing support for several years with conditions that cause progressive debility over time.’
  • Evidence from the Royal College of GPs that ‘Doctors may be concerned that a patient’s state of mind will be negatively impacted upon hearing their life expectancy may only be six months – even if this is only a “reasonable expectation”’. For this reason GPs may be reluctant to specify a time scale, especially when they know there is considerable uncertainty.

 

It is incredibly difficult to predict with any degree of accuracy how long someone has left to live.

Dr Clare Gardiner, Senior Research Fellow at the School of Nursing & Midwifery, University of Sheffield

In 2018 the Scottish parliament removed any explicit time limit from the equivalent laws in Scotland, following advice from the medical community there. The APPG report endorses the Scottish approach, saying ‘there is no evidence-based reason why the UK government cannot follow the Scottish government and allow medical professionals to certify that a person is terminally ill, entitling them to fast-track access to benefits, with no arbitrary and outdated time limit.’

Having evaluated the evidence the report concludes that: ‘the current legal definition of terminal illness, with its “six-month rule”, is unfit for purpose – it is outdated, arbitrary and not based on clinical reality.‘ Its first recommendation is that ‘the UK government amends the definition of terminal illness in UK law so that a person is determined as having a terminal illness if it is the clinical judgment of a registered medical practitioner or clinical nurse specialist that they have a progressive disease that can reasonably be expected to cause the individual’s death.’

MDMD strongly support this conclusion and recommendation. We want people to have a better end of life experience, keeping their quality of life as high as possible for as long as possible. People who have an incurable illness that will eventually end their life should have ready access to the benefits they need.

Following the publication of the APPG report, Work and Pensions Secretary Amber Rudd announced that the government will review its benefits system for the terminally ill. MDMD welcomes this news and hopes that this will lead to England and Wales following Scotland’s example and dropping any life-expectancy time limit on its definition of “terminally ill”.

Another problematic use of the narrow six-month definition of terminal illness is as a possible criterion in determining who is eligible for assisted dying. The criterion is used in the US states such as Oregon which permit a limited form of assisted dying. MDMD has always argued against this approach, in part because of the problems with prognosis highlighted in the APPG report.

The campaign group Dignity in Dying chooses to use this six-month life expectancy criterion as their definition of “terminal illness”. They state on their website ‘We believe the right law for the UK is one that allows dying people, with six months or less to live the option to control their death. We do not support a wider law.’ They omit to state why they hold this belief, other than pointing to experience with the law in Oregon where this has been a criterion in the Death with Dignity law there since 1997.

There are alternatives to the Oregon model that should be seriously considered. In 2016 Canada, aware of the limitations of the Oregon model, chose to explicitly exclude any precise time limit from the criteria of their assisted dying law. The Canadian law uses the more flexible criterion of ‘their natural death has become reasonably foreseeable, taking into account all of their medical circumstances, without a prognosis necessarily having been made as to the specific length of time that they have remaining’ (241.2(2d) bold added for emphasis).

From MDMD’s perspective, a better example would be Switzerland, where at least one Briton goes every 8 days for a medically assisted death. Assisted suicide has been possible in Switzerland since 1942 with no life expectancy criterion.

In their written evidence to the APPG for Terminal Illness report, (see section 22, starting on page 52), Dignity in Dying agree that ‘the current definition of terminal illness is not fit for purpose…’, but add the caveat ‘…in regard to fast track access to benefits’.  They continue ‘for the avoidance of doubt, Dignity in Dying’s position is that a definition of terminal illness based on a six month prognosis would be appropriate for other purposes, such as access to assisted dying (should the law change on that issue).

They argue that the need for additional benefits comes earlier than a need for the option of a medically assisted death and cite the situation in Victoria, Australia where benefit entitlement is available with a 24-month life expectancy, but assisted dying is available only for those with a life expectancy of 6-months or less, (or 12 months or less for those with neurodegenerative conditions). However, they fail to explain why they believe a) a fixed time limit is necessary in the case of assisted dying and b) why that time limit should be six months.

Although MDMD agree that the need for additional financial support will typically come earlier than the need for an option of medically assisted death, in neither case is a fixed time limit appropriate for the reasons given in this APPG report: it is impossible for doctors to accurately predict life-expectancy, and giving a time prognosis may be detrimental to a dying patient’s state of mind. A further complication in the case of assisted dying is that some terminal illnesses cause a loss of mental capacity in their later stages. People with these conditions need to be able to exercise their choice while they can still make a safe and reliable decision if they wish to avoid an imminent deterioration in their quality of life which they consider unacceptable. Mental capacity is frequently lost well before they would have a six month life expectancy.

MDMD believe that people suffering from incurable illness should be helped to have as high a quality of life as possible, for as long as possible, but that when they find their quality of life permanently below the level they can tolerate, they should have the option of a medically assisted death.

Ultimately decisions should to be taken on the grounds of the financial need for state benefits for those with an incurable illness, and the personal end of life choices for those who are incurably suffering. These decisions are not helped by a notion of “terminal illness” based on unreliable life expectancy estimates and artificial time limits. England and Wales should follow Scotland’s example.

Update July 2020

A legal case in Northern Ireland was brought by a woman with MND who was refused additional benefits because she was not within six months of dying. The judge ruled that she “suffered a breach of her human rights”. The BBC report that evidence presented in the case showed that 14% of those who were granted payments because they were expected to die within six months, were still alive three years later.

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Parliamentary debate on the UK Assisted Suicide Law

On 4th July 2019 the House of Commons had the first opportunity to debate assisted dying since the Marris Bill failed in September 2015. The debate can be seen in full here. Prior to the debate MDMD circulated this briefing to MPs.

Nick Boles MP opened the debate by contrasting the death of his father, who ended his life by exercising his right to refuse life sustaining treatment, with that of Geoff Whaley who needed the currently illegal assistance of others for the good death he wanted. Nick Boles explained that “the purpose of today’s debate is not to propose a new law on Assisted Dying, but to understand the effect of the current law… It is only when we have fully understood all the different ways in which the current law impacts the British people that we should consider returning to the question… of what kind of change in the law might be justified.” He then called on the Lord Chancellor and the Secretary of State for Justice to initiate a formal call for evidence on the impact of our existing laws on Assisted Dying. He cited the very limited ability of parliament to gather evidence as a primary reason for this request.

The debate considered many points of view. Several MPs gave moving speeches describing very bad deaths that would have been vastly better had a compassionate Assisted Dying law been in force.  Paul Blomfield MP movingly described his father’s premature unassisted suicide.  “The current law forced my father into a lonely decision and a lonely death.” Although both he and his father strongly support improved end of life care and the hospice movement, he pointed out that “no hospice can enable everybody to die with the dignity that they would want”.  It was soon after a palliative care consultation that his father took the decision to end his life while he still could, without implicating anyone else. “If the law had make it possible he could have shared his plans with us. Knowing that he could, with support, go at the time of his choosing, would have enabled him to stay longer.”

Sir Norman Lamb MP gave further moving examples from his constituents which demonstrate ways in which the current law is failing. One case was a woman’s failed suicide which put her daughter in an impossibly difficult position as her Lasting Power of Attorney. He ended: “it is the individual and not the state who should decide, in a period of terminal illness, whether they bring their life to an end, and that is why the law should change.”

Crispin Blunt MP made the important observation that “The hard truth is that more of us are going to have to grapple with the pain and indignity of crippling progressive infirmities in later life and if we don’t change the law, even more people than the current 1 every 8 days may travel to Switzerland for an assisted death.”

Other MPs highlighted the unfairness of the current law, as the option of a medically assisted death in Switzerland is only available to those who can afford the cost; who are capable of handling the bureaucratic obstacles and who are capable of traveling to Switzerland, often earlier than they would wish.

Steve McCabe MP made a speech in which he referred to the Assisted Dying Coalition and the MDMD poll results. Although he voted against the Marris Bill, he believes the issue needs to be considered by parliament again. He expressed his concerns over a 6-month life expectancy restriction citing the difficulties doctors have in predicting this, and the suffering people it unfairly excludes. He explained that he was very moved by the case of Paul Lamb, saying “I think we need to focus on the quality of life, the capacity for life, and the rational sound judgement of a person who makes such a decision. Life expectancy in itself doesn’t tell us anything about suffering. So I think we should be considering Assisted Dying both in the context of terminal illness but also suffering and a lack of meaningful life.”

Those MPs opposed to changing the law referred to the traditional concerns: the protection of vulnerable people; the need for better palliative care; the views of disability groups; and religious sanctity of life.

Early on in the debate Lyn Brown MP intervened in Nick Boles’ opening speech to describe her mother’s death. She feared that if Assisted Dying had been available her mother would have spent her final months consumed by guilt and anxiety about when she should choose that option because she would have worried about the effect on her close family, the cost of her care, and the NHS resources she was taking up. Nick Boles responded to this by saying that any law would have multiple checks that the requestor was not pressurised by others to make their request. He described the checks that Dignitas make that ensure people are making their choice themselves.

This aspect of the debate is a clear example of the need for a careful gathering and assessment of evidence in the way Nick Boles requested. The concerns of vulnerability and coercion are very important. MDMD hopes that evidence gathering will address:

  • Evidence of the extent of coercion in other jurisdictions regarding requests for medically assisted deaths.
  • Any evidence of coercion in the working of the current law which allows people to refuse life-sustaining treatment to end their lives. (For example, Nick Bole’s father or the case of the “champagne suicide“.) Such people are just as open to coercion to end their life as others who would be eligible for assisted dying under an appropriate law. How do we  currently manage the risk of them being “consumed by guilt and anxiety” over whether or when to choose to refuse treatment as a means of ending their life? Is there any evidence to suggest that the same approach would be inadequate were Assisted Dying legalised?
  • Evidence of how reliably sufficient mental capacity is assessed in legislations which permit various forms of assisted dying, to ensure that anyone requesting an assisted death is making their own safe decision, free from undue persuasion, on a matter as serious as choosing to take their own life.

Some MPs referred to the opposition to Assisted Dying of most religious organisations, saying how they were in favour of Assisted Dying despite their own religious belief. Noel Conway‘s MP Daniel Kawczynski, a Roman Catholic, summed these views up when he said “Perhaps the Church doesn’t always get everything right when it comes to how human beings behave, interact, and ultimately decide to die.”

A number of MPs, including Vince Cable, stated that they had changed their mind on the issue since the Marris Bill debate. In closing the debate Nick Boles said: “I have changed my mind about this issue. Many people have changed their minds about this issue. I hope that more people will change their mind about this issue so that we can get on and change the law and make this country a more humane place for people to live and die.” These are sentiments that MDMD wholeheartedly endorse, but there is still a very long way to go.

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Another incurably suffering man launches new assisted dying challenge

Phil Newby, 48, who suffers from advanced Motor Neurone Disease, has announced his intention to bring a new legal case challenging the UK’s law on assisted dying. 

Phil, who was diagnosed with the progressive neurological condition in 2014, is unable to walk and has lost the ability to control movement in his arms and hands. He argues that the UK’s law, which prohibits anyone from assisting him to end his own life, is incompatible with his fundamental human rights to private life and against inhumane treatment. Phil proposes to change the law so as to permit mentally competent adults who are either facing incurable suffering or have a life-shortening progressive degenerative condition which will ultimately lead to death, to request a dignified death. 

Under the 1961 Suicide Act, anyone found guilty of assisting another to end their life could face a maximum of fourteen years’ imprisonment. In 2015, the House of Commons debated but rejected a proposal from Rob Marris MP, which would have legalised assisted dying for those who are likely to die within six months, by 330 votes to 118. 

Phil Newby’s case differs from the proposed case that Paul Lamb, My Death, My Decision’s patron, intends to bring forward, as Phil intends to follow the successful approach which overturned the law on assisted dying in Canada and was intended to underline in the landmark Omid T case, before he ended his life at Lifecircle in Switzerland. This means that, if granted permission, the UK’s most senior judges will be invited to comprehensively review the evidence on assisted dying, before ruling on its compatibility under the Human Rights Act 1998.  

Phil Newby has issued a letter to the Justice Secretary and received a response, but is asking for support from the public to cover experts’ expenses and legal fees before he can progress. He has already raised over £18,000.

Phil Newby said:

“I’ve come to accept that MND will eventually kill me, but I’m determined to enjoy life and contribute to my family for as long as I possibly can. When the time comes, I would like compassionate medical help to die in peace at home, with my family. Instead, my wife and girls face watching me starve, choke or suffocate to death, because of our inhumane and outdated laws that criminalise assisted dying.

It doesn’t have to be this way. Other countries have introduced a compassionate and common-sense assisted dying legal framework, with safeguards. 

This case will be the biggest fight of my life, and I can’t do it alone. I’m asking the public to support me by sharing my story and donating to our legal fund through CrowdJustice. Our legal strategy seems to be winning plaudits from members of the public, journalists, and commentators alike, because it simply asks for our senior judges to carefully examine the evidence for and against assisted dying. Together, we can make a change.” 

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

“Now more than ever, as society has become increasingly adept at extending the length of life, but not always its quality, the right to decide the manner and timing of your own death should be seen as a fundamental human right. We welcome Phil Newby’s decision to challenge our country’s archaic stance on assisted dying, and stand up for those who are of sound mind and either terminally ill or incurably suffering. We don’t consider terminal illness alone to be a reliable measure of someone’s suffering or quality of life, nor believe that the option of a peaceful, painless, and dignified death should be limited to someone with six-months left to live. We welcome this as yet another step forward in our country’s long journey towards a compassionate change in the law.”

Saimo Chahal QC (Hon), Solicitor, Bindmans LLP said:

“It is vital that the courts should consider Phil’s case and the legal arguments for and against allowing a law change so as to come to an informed and balanced decision. This has not happened to date and the time is ripe for the issues which Phil raises to be confronted.  Expert evidence should be allowed with cross examination of all experts both for and against Phil’s claim so that the arguments can be fully tested in court as much of the debate in this area has focused on unsubstantiated and emotive stories about the harm that a law change would result in, without the evidence to back up these claims.” 

He is being represented by Saimo Chahal QC (Hon), Partner, Bindmans LLP, and counsel  Paul Bowen QC of Brick Court Chambers with Jennifer Macleod and Adam Wagner of Doughty Street Chambers.

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My Time to Die

LBC’s Nick Ferrari interviewed Alzheimer’s sufferer Alex Pandolfo about his plans to end his life in Switzerland. The moving video is available on line. Nick gently probes Alex’s motivation for wanting to end his life, and discusses how he will decide when the time is right for him.

Alex is clear:

I don’t want to die. I want to live with an acceptable quality of life to me for as long as I possibly can.

He goes on to explain very clearly where the limits of an acceptable quality of life are for him:

I don’t want to go into an old folks home. Its not for me. I don’t want people there 24hrs a day doing everything for me. It’s not the kind of quality of life that I want.

MDMD has been following Alex’s story since May 2017, and interviewed him in February 2018. His views have remained very consistent. Since coming to terms with his diagnosis, Alex has spent his time campaigning strongly for a change in the law. He told Nick Ferrari that he was planning to go to Switzerland for a medically assisted death “later this year”. Nick asked if he could accompany him, as Alex had not asked anyone else. Alex warmly accepted Nick’s suggestion.

News coverage of Alex’s case is important to our campaign for the following reasons, not all of which were covered by the interview:

  • Alex suffers from Alzheimer’s disease. This is a progressive terminal illness. Death may not be for many years after diagnosis. In the final few years a sufferer will not have the mental capacity necessary to make a life-ending decision.
  • Some jurisdictions, such as Oregon USA, which have introduced assisted dying legislation, have limited it to those who have a life expectancy of 6 months or less. This form of legislation does not help people like Alex as they will not have sufficient mental capacity by that time. Many will have suffered far more than they would wish by that stage.
  • The last attempt in the UK parliament to change the law on assisting suicide was restricted in this way. MDMD and the other campaign organisations which form the Assisted Dying Coalition believe this is too limited.  MDMD believes that having mental capacity to make a life-ending decision at the time of an assisted death is a very important safeguard.
  • Dementia (including Alzheimer’s disease) is the cause of death for 1 in 8 of all deaths in England and Wales, a statistic that increases to almost 1 in 4 for women over 80. The Office of National Statistics cites this as the most common cause of death. As healthier lifestyles and medical advances increase life expectancy, the number of people who live long enough to suffer from dementia is increasing, even if it is not their eventual cause of death.
  • Recent research by NatCen, commissioned by MDMD, revealed that 88% of people surveyed think medically assisted dying is acceptable in at least some cases for people like Alex who request it. Only 12% considered it “never acceptable”. This aspect of the research was designed to assess the level of public support for people like Alex, compared to other more restrictive forms of assisted dying. The public are with Alex. Those responsible for public policy who believe in patient-centred care need to listen to Alex and those who support him.

MDMD is most grateful to Alex for his continuing excellent campaign work and his openness in publicising his story and his point of view – a view that is shared by all MDMD supporters.

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BMA to poll members on assisted dying

MDMD is greatly encouraged in its campaign by the news that both the BMA and RCGP are to consult their members on their view of assisted dying. Precise details are yet to be announced and we will follow these developments closely.

Earlier this year the RCP poll resulted in a move from opposed to neutral, reflecting the divided views of its members. In the run up to that vote, those opposed to a change in the law mounted a very vocal opposition campaign in the hope of preventing the RCP changing its position. Their views do not represent the majority of people in the UK – the patients – who want to exercise choice over their own end of life as part of the patient-centred healthcare they expect. A MDMD poll recently demonstrated very strong support for various forms of assisted dying, including those covering people with early stage dementia and people who were incurably suffering but not expected to die within a short period of time.

In the past some doctors have expressed concern that an assisted dying law that uses a life expectancy prognosis as one of its criteria would be very hard for them to implement. Last year this concern was used by Scottish doctors to successfully argue for a broader definition of “terminal illness” in Scotland. When Canada passed its Medical Aid in Dying legislation it was limited to those whose “natural death has become reasonably foreseeable”. Both these examples show ways in which this particular medical objection can be overcome. MDMD support these moves, though we also campaign for assisted dying legislation to apply to those who are incurably suffering whether or not they are “terminally ill” – people like Paul Lamb, Omid T, Debbie Purdy and Tony Nicklinson, whose plight caused ex-Archbishop of Canterbury Lord Carey to change his view to support a change in the law on assisted dying.

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Rational Suicide in the Elderly: the US perspective

A recent article in the Washington Post describes a group of residents of a retirement community in Philadelphia who hold clandestine meetings to discuss their desires for a rational end of life when they feel the time is right for them. Avoiding end stage dementia is cited as one of their particular concerns. The article is of interest as its theme is close to the heart of MDMD’s campaign. The notion of “Rational Suicide in the Elderly” is emerging as a topic for academic research – see MDMD’s review of a book on this topic published in 2017.

The article quotes Yeates Conwell, a psychiatrist specializing in geriatrics at the University of Rochester and a leading expert in elderly suicide. “The concern that I have at a social level is if we all agree that killing yourself is an acceptable, appropriate way to go, then there becomes a social norm around that, and it becomes easier to do, more common.” Prof Conwell believes that promoting rational suicide “creates the risk of a sense of obligation for older people to use that method rather than advocate for better care that addresses their concerns in other ways.” He believes that this is particularly dangerous with older adults because of widespread ageist attitudes and that as a society, we have a responsibility to care for people as they age.

MDMD agrees with Prof. Conwell that there is a responsibility to care for people (elderly and others) who need care… but only when that care is the “care” wanted by the individual. Similarly, MDMD welcomes improved palliative care for those who find that they can be adequately helped by it. Prof Conwell seems to believe that those wishing a peaceful exit from life, for good reason, and after careful consideration of all other options, should not be helped. To MDMD that is denying them the “care” that they need, forcing them to suffer against their will instead – surely not what a compassionate society would want.

MDMD also agrees that there should be no “obligation” for anyone to feel they “should” chose an assisted death if that is not their wish. However, we should not confuse “obligation” with a well-informed and carefully considered choice of something which becomes socially more available and acceptable. Married people who are unhappy with their partners are not “obliged” to divorce, however many are grateful to be able to choose this option, after careful consideration, now that it is considered socially acceptable, freeing them from the constraints of an unhappy marriage.

MDMD believes that the issue is not about “age” but about unacceptable quality of life due to incurable illness. The MDMD view is that the issues relate to likely future health, quality of life, and the individual’s ability and wish to adapt to their changing situation. These are discussed in our piece on When is a Life Complete?.

The Washington Post article cites a paper on suicide risk in long-term care facilities which reviews the academic literature. The paper concludes “Existing research on suicide risk in long-term care facilities is limited, but suggests that this is an important issue for clinicians and medical directors to be aware of and address. Research is needed on suicide risk in assisted living and other non-nursing home residential settings, as well as the potential role of organizational characteristics on emotional well-being for residents.” In the UK “rational suicide in the elderly” (or better, in the incurably ill who feel that they have unacceptably low quality of life), seems under researched. Work done by Dignity in Dying suggests that 7% of suicides were by people who were “terminally ill”. The percentage of suicides which could be considered to be rational suicides of those whose quality of life is intolerable due to incurable health conditions, is likely to be significantly larger.

MDMD agrees that much more research is needed in this area. It is something that needs to be tracked over time. Informally some people say things like “I don’t want to end up like my mother did” or “I don’t want to end up in a nursing home”, echoing the opinions of the group in Philadelphia. Such statements are very common among MDMD supporters. What will these people do in practice when they reach that stage? Will the aging baby-boomer generation take a different approach to their parents in reality if the law hasn’t changed to make it easier to end one’s life at the time of chosing? Will people just leave it too late?

Understanding and tracking trends is one thing, deciding how society should help such people have a good death is another. MDMD campaigns for carefully controlled legal access to peaceful and reliable means to end life, ideally with the help and counciling of medical professionals, to enable a good death. The current options of refusing life-preserving treatment,  DIY suicides without professional guidance, or one-way journeys to Switzerland are woefully inadequate. We need a better solution which goes hand-in-hand with better palliative care.

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Autonomy and Safety of Assisted Suicide Law – reflecting on Jonathan Sumption’s Reith Lecture comments

This year’s BBC Reith lecturer is former supreme court judge Jonathan Sumption QC, who was one of the judges in the Tony Nicklinson case. In his first lecture “Law’s Expanding Empire“, he looked at what we expect of the law and how it’s aims have developed over the years.

The programme can be heard here, or the transcript read here.

The lecture, and in particular one of the questions at the end, are of interest to the debate on the Assisted Dying law. Lord Sumption discussed the degree to which the law permits autonomy and protects against risk, both of which have important implications in the assisted dying debate.

Lord Sumption identified “growing moral and social absolutism to produce conformity” as one trend in law. In some areas such as religious worship and homosexuality the law has been relaxed. (The decriminalisation of suicide in 1961 is another relevant relaxation.) In other areas he argued that the law applies conformity. “We are a lot less ready than we were to respect the autonomy of individual choices. We tend to regard social and moral values as belonging to the community as a whole, as matters for collective and not personal decision.” He discussed the Charlie Gard case, pointing out that the parent’s wishes were not permitted. In cases like this the medical profession understandably use the law to make the final judgement, protecting them from legal liability. Lord Sumption was not disagreeing with the Charlie Gard ruling, but pointing out how the law limits autonomy, of the parents in this case, in ways that it wouldn’t have done a generation ago. The law has always, rightly, limited personal autonomy when this is necessary to protect the rights of others. “What is new is the growing tendency for law to regulate human choices even in cases where they do no harm to others and there is no consensus about their morality.

Although this trend may go some way to explain the reluctance to legalise assisted dying, in medical ethics there is a very strong principle of respecting individual autonomy. We hear “patient-centred medicine” being advocated, though this currently stops short of patient-centred choice when it comes to assisted dying, due to the current law. In refusing treatment, however, patient autonomy is strongly defended. In the Noel Conway legal challenge it was said that a change in law was unnecessary as he could end his life by removing the breathing apparatus on which he was dependent. Precisely this option was used by John King, who also suffered from MND. This right to refuse life sustaining treatment is upheld by the courts even when it is contrary to medical opinion. This is seen clearly in cases such as the “champagne suicide” and a woman suffering from mental illness who refused a leg amputation that her medics deemed essential. Advance Decisions allow us to extend this right to refuse life sustaining medical treatment even when we have lost the mental capacity to make the decision at the time.

A second area Lord Sumption identified as leading to growing dependence on the law is the quest for greater security and reduced risk. He discussed the risk of road accidents posed by motor vehicles. The accepted situation is that the benefit of convenient fast transportation outweighs the risk of loss of human life and severe injury. “Eliminating risk is not an absolute value, it’s a question of degree.” He gave an example of how to protect the public from the ill-advised behaviour of some individuals, such as a man who was paralysed due to diving into a lake. The House of Lords rejected a claim against the local authority as the problem was seen to be self-inflicted folly. “Every time that a public authority is blamed for failing to prevent some tragedy like this, it will tend to respond by restricting the liberty of the public at large in order to deprive them of the opportunity to harm themselves. It’s the only sure way to deflect criticism.” He pointed out that “the law doesn’t in fact provide a solution for every misfortune. It expects people, within limits, to look after their own interests.” He acknowledged that “public expectations are a powerful motor of legal development” but qualified this saying “Judges don’t decide cases in accordance with the state of public opinion but it is their duty to take account of the values of the society which they serve. Risk aversion has become one of the most powerful of those values and is a growing influence in the development of the law.” This is highly relevant to the discussion of possible risk in the current law on assisted suicide, and any future law enabling medical assistance to die.

Interestingly the “risk” argument is used by those on both sides of the assisted dying debate. In a recent article Alyson Thomson, director of Dignity in Dying in Scotland, said: “The current law is unsafe and, unlike an assisted dying law, does not protect vulnerable people. We are calling for a compassionate law with up-front safeguards – rather than a criminal investigation.” This was rejected by Baroness Grey-Thompson in a letter in the Times on 20th May 2019 which went on to argue that legalised assisted dying would be unsafe. The risks on each side are relative.

From MDMD’s perspective the current law against assisted dying makes some people feel they have to end their life themselves, or persuade others to help them illegally.  7% of recorded suicides involve people who are terminally ill. To this should be added suicides of those with incurable illnesses but without terminal illness, which result in an unacceptable quality of life which causes them to end their lives. Many unassisted suicides fail, possibly leaving seriously ill patients even sicker and more desperate. After a death it is much harder to assess whether the deceased agreed, or was coerced. You can’t ask them. There wasn’t the chance to protect them. There are a number of very real risks with the current law when people attempt to take their lives themselves (or with assistance) due to the lack of an assisted dying law:

  • Suicides which are ill-advised due to lack of counselling;
  • Suicides or assisted suicides which have been coerced;
  • Botched suicides resulting in the person surviving but in a worse condition;
  • Suicides which are done sooner than ideally wished out of fear that it may be impossible to do unaided as the illness progresses.

It is surely safer to professionally evaluate any request for medically assisted suicide, and provide legal assistance when there are no acceptable alternatives and the person is making a free, mentally competent, informed and persistent life-ending choice in the face of incurable and unacceptable suffering. If medically assisted suicide were available in this way there may be very rare cases where coercion remains undetected, despite the best processes on detection. However, exactly the same potential risk exists in patients who choose to end their lives legally today by refusing life sustaining treatment. Society already accepts that risk of possible coercion. So why should the legalised assisted dying case be treated differently? Those who voice their concerns about the possible risks of coercion in assisted dying, but who also uphold the patient’s right to refuse life sustaining treatment, seem highly inconsistent.

It is very relevant to point out that another retired and highly respected judge, Sir Nicholas Wall, the former President of the Family Division, Britain’s most senior family law judge chose to end his life by hanging in his care home, following a dementia diagnosis. Few would argue that this was a good death, but quite possibly more preferable for Sir Nicholas than the alternative. Deaths like this are the grim reality of the current law preventing medical assistance to die.

In the questions that followed Lord Sumption’s lecture, Ann Whaley told Lord Sumption about her well publicised case concerning how she helped her husband go to Switzerland for an assisted death there and how she had to endure a police investigation. She said “The current law on assisted dying is not working and a huge majority of the public wants to see a change.” Lord Sumption responded that it was not for judges to make decisions on these matters. He questioned the reliablity of opinion polls, due to the simplicity of the questions asked and continued: “this is a subject on which people have strong moral values and on which they disagree. There is a large number of people who feel … that changing the law so as to allow assisted suicide would render large numbers of people vulnerable to unseen pressures from relatives and so on. There are others who feel that the intervention of somebody in the life of another so as to end it is morally objectionable.” He regarded this as something that needed to be resolved by a political process.

The chair then pressed Lord Sumption for his personal opinion on the issue, to which he responded: “I think that the law should continue to criminalise assistance in suicide and I think that the law should be broken. I think that it should be broken from time to time. We need to have a law against it in order to prevent abuse but it has always been the case that this has been criminal and it has always been the case that courageous relatives and friends have helped people to die, and I think that that is an untidy compromise of the sort that I suspect very few lawyers would adopt, but I don’t believe that there is necessarily a moral obligation to obey the law and, ultimately, it is something that each person has to decide within his own conscience.”

Many people have reacted with astonishment at this statement. Suggesting that the law should be broken is surprising enough, clearly indicating that the law is not appropriate, but it is quite incredulous when the reason given for not changing it is due to a fear of abuse which is unsubstantiated, and as argued above, is no greater than the risk of abuse accepted today regarding refusal of life sustaining treatment. In his lecture he argued that it was unrealistic to expect the law to guard against all risks – especially when attempting to do so limits autonomy unreasonably. The desire for a peaceful medically assisted death, when faced with incurable suffering, is surely a case where autonomy should be respected. From MDMD’s perspective the risks of the current law and the increased autonomy of the incurably suffering who wish to end their lives, far outweigh any risks of a carefully designed and implemented assisted dying law.

Ann Whaley pointed out that Lord Sumption omitted to mention the issue of compassion – not only for the person wanting an assisted death, but also for their loving family who have to suffer the consequences of the current cruel law to provide the help the suffering person requests. Unlike Lord Sumption, many people do feel a moral obligation to obey the law – and a good thing too! People taking the law into their own hands is a hugely risky suggestion. Instead of being encouraged to break a bad law, we need a good compassionate law which provides autonomy with acceptable safety – at least the same level as safety afforded for those who refuse life-preserving treatment.

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