Life Expectancy

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  • ‘The assumption that people with terminal illnesses will need support only for a matter of months until they die is outdated and does not reflect the modern reality of many terminal conditions, where people can live and need ongoing support for several years with conditions that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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Videos from Healthcare and Secularism 2018 Conference

In October 2018, the National Secular Society and the Secular Medical Forum held a joint conference on Healthcare and Secularism. The final two talks concerned assisted dying and the right to die. Both talks were excellent. Videos of the talks are available on YouTube and are embedded here with some description and comments.

1. Dr. Jacky Davis – An Update on Assisted Dying – One hundred million people now have access to it, why can’t we?

Jacky Davis is the Chair of Healthcare Professionals for Assisted Dying (HPAD). Jacky is also a consultant radiologist at Whittington Hospital; a member of the BMA Council and of the BMA ethics committee; and a board member of Dignity in Dying.

The talk makes many excellent points – especially in covering why it is so difficult for the BMA to change its approach on assisted dying. Policy is decided by an annual conference of only 300 people. The BMA have so far refused to hold a ballot of all their members on whether to adopt a neutral position on assisted dying. MDMD strongly endorse Jacky’s calls for the BMA to hold such a vote.

Of particular interest to MDMD is Jacky’s description of a public debate in Gloucester which she took part in prior to the 2015 Marris Bill debate in the House of Commons. She said “I was in a position I often find myself in. I was being attacked because they [the audience] didn’t think that our position on assisted dying went far enough.”

Jacky went on to discuss criticism of the 6 month criterion. She dismissed, as “another straw man”, the argument used by some, that the difficulty of accurate prognosis was a reason for not changing the law. She then described those who wish to be able to have a medically assisted death: “These people are not people who want to commit suicide. These are people who want to live as long as they can, until they don’t want to any more.”

One really positive suggestion Jacky put forward was with the practicalities of doctors working with an assisted dying law. She estimated that, extrapolating from the situation in Oregon, each GP practice would expect to see one patient who wanted as assisted death every 7 years. GPs might reasonably be concerned that they wouldn’t know how to deal with such rare events. Jacky suggested regional teams of trained experts who GPs could work with.

2. Dr Michael Irwin – When will MARS (Medically Assisted Rational Suicide) land on the UK?

Michael was Medical Director of the United Nations; chairman of the Voluntary Euthanasia Society prior to it changing its name to “Dignity in Dying”; and a past president of the World Federation of Right-to-Die Societies. He founded the Society for Old Age Rational Suicide in 2009 and was its coordinator until 2015, after which it was renamed “My Death, My Decision” (MDMD). Michael is a patron of MDMD.

Michael picked up on a number of points made by Jacky, saying “I’m very much is favour of the Oregon Bill, but as a start, it should go much further.”

Michael discussed some different approaches to defining “terminal illness”, contrasting a GMC reference to “dying over the next 12 months” to the Oregon Bill’s 6 months, and the situation in Scotland where a recent change to benefit legislation replaced a 6 month “terminal illness” criterion with an evaluation by doctors on a case by case basis without requiring an estimate of life expectancy.

Michael pointed out that there is currently uneasiness in Oregon over their 6 month criterion with moves to expand it to cover longer term degenerative diseases.

MDMD Conclusions

These are two very experienced campaigners, both with a strong medical background. It is fascinating to hear both the common ground and the differences in their views. From MDMD’s perspective Jacky’s defence of the 6 month criterion does not stand up to serious scrutiny, although it may be a realistic political compromise in the UK and elsewhere in the short or medium term. We recognise that is has provided an important option to millions of people around the world – which we in the UK do not have.

However, dismissing the difficulties of accurately giving a life expectancy prognosis as a “straw man” seems too simplistic. Even without the moral dilemma of assisted dying, Scottish doctors found the criterion unacceptable and successfully pressed for this to be removed as a criterion in benefit assessments. If this is the case for benefit assessment, why not also for assisted dying?

Even more importantly, MDMD fully agrees with Jacky’s statement that the people who should be allowed access to medical assistance to die are “… people who want to live as long as they can, until they don’t want to any more”, (when this is due to the intolerable and incurable medical conditions they face, which even the best palliative care cannot alleviate). But Jacky’s description includes high profile cases like Tony Nicklinson, Debbie Purdy, and Omid T. None of these people could be helped by the Oregon-style law she advocates. In addition, some of those in early stage dementia fit her description, while they retain mental capacity – people like Alex Pandolfo who plans to go to Switzerland to end his life when his condition becomes unbearable for him. They face the later stages of dementia when mental capacity will be lost, but are also ineligible for help from an Oregon-style law. Dementia is now the cause of 1 in 8 of all deaths in England and Wales – and nearly 1 in 4 deaths of women over 80, according to the latest ONS data.

In her final interview, in December 2014, Debbie Purdy, who worked closely with Dignity in Dying in her campaign work, said “I think Lord Falconer, in saying that if you’re within the last six months of your life, misses the point that Tony Nicklinson, myself, Paul Lamb – the people whose cases have all been public – all have to face decades of a life that we don’t consider acceptable, and that is the thing I find hardest.” Michael Irwin, together with MDMD, Friends at the End and Humanists UK, very clearly support Debbie’s point of view. Jacky Davis failed to explain why she advocates an approach which wouldn’t help people like Debbie, while at the same time arguing for “people who want to live as long as they can, until they don’t want to any more”, to have the option of a medically assisted death, which is just what Debbie wanted. With this approach, we expect that Jacky will continue to hear the views she described from her audience in Gloucester.

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Dementia and Alzheimer’s still increasing as leading cause of death

The Office of National Statistics has recently published data on cause of death in 2017. For the third year running Dementia and Alzheimer’s is the leading cause of death, and the trend is increasing. We have been monitoring this significant trend since it was first reported in 2016. See our previous reports on the 2016 and 2015 data.

The first summary point of the report on the 2017 report states:

“Deaths due to dementia and Alzheimer disease increased again in 2017 and it remained the leading cause of death in England and Wales, accounting for 12.7% of all deaths registered.” (This compares with 12% in 2016 and 11.6% in 2015)

The report breaks the data down by gender: “Dementia and Alzheimer disease remained the leading cause of death for females in 2017, accounting for 16.5% of all female deaths, an increase from 15.6% in 2016.” For men the leading cause of death is ischaemic heart diseases, accounting for 13.7% of male deaths.

For the over ‘80s Dementia and Alzheimer disease remained the leading cause of death for both men and women. For men it was responsible for 15.1% of deaths aged 80 years and over, (up from 14.3% in 2016 and 13.7% is 2015). For women it was responsible for 23.2% of deaths over 80. (up from 22.2% in 2016 and 21.2% in 2015)

The annual ONS report groups causes of death according to a classification system developed by the World Health Organization (WHO), modified for use in England and Wales. The report explains that “at the broad disease group level, cancer remained the most common cause of death in 2017 (28.1% of all deaths registered), followed by circulatory diseases, such as heart diseases and strokes (25.0%).” However this latest report gives a greater level of detail in its analysis, separating out various different cancers for example

The report identifies several reasons why the statistics are showing a marked increase in deaths due to dementia and Alzheimer disease:

  • People are living longer and surviving other illnesses. Dementia and Alzheimer disease mainly affects people aged over 65 years.
  • Male life expectancy has been increasing faster than women’s. This is thought to contribute to the increase in death due to Dementia and Alzheimer disease in 2017
  • Better understanding is likely to have led to increased levels of diagnosis and a higher incidence of identifying Dementia and Alzheimer disease as the primary cause of death on death certificates.
  • The way in which cause of death was coded was changed in 2011 and 2014. This increased the number of deaths attributed to dementia.

MDMD’s coordinator Phil Cheatle says: “This continuing trend highlights the increasing importance of dementia and Alzheimer disease, especially for the elderly. It reinforces MDMD’s position that assisted dying legislation needs to give the option of an assisted death to people suffering from these terminal diseases. We believe that this can only be done safely while the person still has the mental capacity to make a life ending decision. This applies to people in the earlier stages of dementia and is the criterion used for dementia sufferers who seek a medically assisted death in Switzerland, like MDMD campaigner Alex Pandolfo. Unfortunately a law restricted to those with a life expectancy of six months or less would not help dementia and Alzheimer sufferers as by the time they reach this point, (which is impossible to accurately predict), they will not have sufficient mental capacity.”

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Progress in Victoria, Australia

MDMD is pleased to see that an assisted dying bill in Victoria is making good progress, having passed a vote in the lower house by 47 to 37. The Bill still needs to pass a vote in the upper house.

See this BBC report, for example. More details are provided in the Dignity in Dying news story.

While the bill is a significant step forward, it is restricted to the “terminally ill”. In the case of Victoria, this is defined as being diagnosed with an incurable disease, illness or medical condition that is expected to cause death within 12 months. It is interesting that Victoria chooses a 12 month condition rather than the 6 months used in US states, or the “reasonably foreseeable” death, with unspecified time duration, used in Canada. Switzerland, the Netherlands and Belgium do not have a time limit in their assisted dying legislation.

The bill proposed for the UK and rejected by the House of Commons in September 2015 followed the Oregon model and was restricted to those with a life expectancy of 6 months or less.

Which time limit, (if any), should be used? Why should terminally ill people in the UK whose life expectancy is between 6 and 12 months be denied the opportunities that those in Victoria may soon have? MDMD would like to see clarification on this from those, like Dignity in Dying, who both welcome the developments in Victoria, but seek to restrict assisted dying in the UK to those who are within 6 months of dying. It they publish explanations of their position, we will gladly link to them here.

From the MDMD perspective, we consider any time limit to be arbitrary, and at best a first step towards a more inclusive criterion. Perhaps this is necessary caution. But time limits are impossible for doctors to accurately predict and unfairly exclude people who may have to suffer for many years – such as Tony Nicklinson, Omid, and dementia sufferers like Alex Pandolfo.

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New research on the increasing amount of care people need at the end of life.

A paper recently published in the Lancet (and available online), has been reported widely. The headline statement is that “the amount of time spent needing daily care at the end of life has doubled in England over the past two decades.” See articles by the BBC and the Guardian for example.

The study compares data for people aged 65 and over from 1991, with corresponding data from a similar demographic in 2011. The paper contains much useful data beyond the simplistic headline. First, life expectancy for a 65 year old has increased significantly. In 1991 a 65 year old man could expect to live for 12.9 years. By 2011 this had increased to 17.6 years, an increase in life expectancy of 4.7 years over the 20 year period. The equivalent figures for women show life expectancy has increased from 16.5 to 20.6 years – an increase of 4.1 years.

More interestingly, the study shows how the care needs for the over 65s are changing. The report uses a measure of care needs in terms of the frequency with which care actions are needed. “High dependency” is defined as needing 24-hour care to cater for frequent unpredictable needs. This could be as a result of being bed or chair bound, or incontinent for example. “Medium dependency” refers to needing care at regular intervals throughout the day, for example with preparing meals. “Low Dependency” refers to help needed less than once per day, such as with baths, shopping or cleaning. “Independent” means anyone else.

People have different views as to how much care they would be happy to receive in later life. Some wish to live as long as medical science can enable, regardless of how much care they would require. Others would prefer to have assistance to die when their quality of life gets permanently below a certain minimum level they consider tolerable. We can roughly equate this quality of life measure with the level of care that is necessary. Those who do not wish to live as long as possible might reasonably choose to end their life when they reach “high dependency”, or for some, possibly “medium dependency”, depending on their specific situation. Obviously any decision a particular person might reach, that their life is complete and they should take steps to end it, depends on many factors, but dignity and independence in terms of care needs, and the anticipated duration of this level of care, are likely to be strong factors.

In 1991, men of 65 or over could expect to require high dependency care for 0.4 years. This rose to 1.3 years by 2011. For women the figures are 0.6 years in 1991, rising to 1.9 years by 2011. This is a more than three-fold increase for both men and women over the 20 years considered.

If we look at the duration that a 65 year old could expect to need either medium or high dependency care, (the “daily care” referred to in the headline report), the figures for men are 1.1 years in 1991, rising to 2.4 years by 2011; and for women, 1.6 years in 1991 rising to 3.0 years by 2011. This is the “doubling” which was widely reported.

Of course, these expectancy figures are averages. Some people will have much longer than average periods of medium and high dependency care, while for others they will be much shorter.

The figures are highly significant for those who would prefer not to spend an extended period of time with substantial care needs at the end of life. For them it is perhaps the three-fold increase in expected duration of high dependency that is the most worrying statistic.

MDMD would like such people to have the legal option of a medically assisted death, if that is their own well-informed and settled wish, without having to travel abroad. This report reinforces our view that assisted dying legislation needs to provide help for people based on their quality of life, irrespective of their life expectancy. To limit assisted dying to those with a life expectancy of six months or less, (as recent failed parliamentary attempts have tried to do), misses the point that today’s 65-year-olds can expect to live in a state of high dependency at the end of life for well over a year for men, and nearly two years for women. This is not the sort of good death that some people want.

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MS Sufferer heading to Switzerland while he still can

The Scottish Sun reports the case of Colin Campbell.

Colin suffers from the Primary Progressive form of MS. He intends to go to Lifecircle in Basle to end his life on 15th June while he still can. He told MDMD “I qualify everything I say with ‘intend’ as my health could fail totally at any time.” He has lived with the gradually worsening condition since 1995, but his quality of life is now deteriorating below the limit he can tolerate, and he needs to take action now, while he is still physically able to.

Colin has bravely chosen to make his decision public in advance, to help demonstrate why a change in the law is necessary. Why should people like him have to go to Switzerland to find compassionate doctors who are legally able to help him have the good death he wishes? We need to provide this in the UK, for mentally competent adults who have made their own, settled choice in the face of incurable, unacceptably low quality of life.

Cameras will record Colin on his journey. Andi Reiss is the independent documentary film maker who is following Colin’s case as part of a larger project looking in detail at the issues around assisted dying.

Colin has told MDMD that his doctors have not discussed his life expectancy with him. The Multiple Sclerosis Trust clearly points out that MS is not a terminal illness. There appears to be no prognosis of six months or less. Given this, it is interesting that Ally Thomson, director for Dignity in Dying Scotland is quoted in the Scottish Sun article as saying “It is a tragic and unacceptable reality that seriously ill people like Colin Campbell feel they have no other choice but to spend their final days traveling hundreds of miles to Switzerland in order to have the dignified death they desire.” MDMD fully agree with her on this. Unfortunately she doesn’t go on to say what option she would like to see for people like Colin. The legislation Dignity in Dying have been proposing would not help him, as his life expectancy is not less than 6 months.  Perhaps this case will help Dignity in Dying see the need to broaden their policy to show more compassion to people like Colin (and Omid), instead of denying them the help they need and thereby prolonging their suffering unacceptably. MDMD certainly hopes so.

MDMD commend Colin for his bravery in being so public at this difficult time. We respect his choice and wish him well in the course he is choosing.

Update October 2017: Colin deferred his decision to end his life in Switzerland. See the story here.

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How long do we really want to live for?

In an interesting BBC Website article, health correspondent Nick Triggle asks this important question. The article usefully differentiates between “life expectancy” and “healthy life expectancy”. It points out that many people answer the question by saying “As long as I have my health”.

The question presupposes that we have a choice as to when to die. End of life choice, and support in end of life decisions is woefully inadequate in the UK – and will continue to be until there is the option of a medically assisted suicide or euthanasia, in the context of supportive palliative care for all. Only then will some people be able to have the “good death” they would hope for.

In answering the question “How long do I really want to live for”, the response “as long as I have my health” is rather simplistic. How much “health” do you need to sustain a quality of life you feel is worth living? The answer to that is personal, depending on many factors. The important point is that for some people a point is reached where incurably poor health, combined with other factors, leads them to conclude that their quality of life is permanently below the level they are prepared to accept. They feel their life is complete and are ready to die. Some take the final logical step and rationally decide to end their life.

MDMD campaign for changes in the law and medical practice so that people who feel this way can be supported, first by care, appropriate to the individual, to ensure their quality of life is acceptable to them for as long as possible; then by counselling to ensure their end of life decision is their own, persistent, mentally competent wish; and finally, if it is the person’s persistent wish, by legal medical assistance to die. When this is available, the question “How long do we really want to live for?” can be answered much more meaningfully.

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