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  • ‘The assumption that people with terminal illnesses will need support only for a matter of months until they die is outdated and does not reflect the modern reality of many terminal conditions, where people can live and need ongoing support for several years with conditions that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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