Dementia

Pulling “the plug on your life support … because of a message you left on facebook” – Fact or Fiction?

MDMD’s Campaigns and Communication Manager, Keiron McCabe, breaks down the new Clinically-Assisted Hydration and Nutrition Guidance from the British Medical Association

Recently, writing in the Daily Mail, Dr Max Pemberton criticised the new British Medical Association’s (BMA) “Clinically-assisted nutrition and hydration (CANH) Guidance”, for allowing “one Facebook post [to] be enough to bring about your death”. The news follows after Care not Killing, an organisation opposed to changing the law on assisted dying, similarly wrote to the BMA challenging the new guidelines.

Clinically-assisted nutrition and hydration (CAHN), is a medical treatment for someone who has difficulty swallowing or is unable to gain sufficient water orally. It normally involves inserting a tube in the vein and using it to provide a liquid formula feed. It does not include spoon feeding or any other way of providing food and liquid by the mouth.

In his article, Dr Pemberton stated that he had “no ideological objection to treatment being withdrawn from seriously ill patients … [because] the job of a doctor is to alleviate suffering, not extend life unquestionably”. Indeed he even went as far to say that “there are certain situations – suffering chronic pain that cannot be managed and with no hope of reprieve, or being completely paralysed, for example, – when [he] would not want to live and indeed would consider it cruel of others to proactively extend [his] life in any way”.

However, reflecting on the new BMA guidance, Dr Pemberton called it “terrifying”, that “relatives of patients who are so ill [that] they cannot make a decision for themselves and who have no prospect of recovery, [are being advised to] trawl through … Twitter, Facebook and Instagram posts or emails for references to death, to help reach decision on whether to withdraw treatment or switch off life support”.

He argued that as a society, we are all prone to hyperbole and exaggeration online, and that this new guidance risked medics taking a comment on social media out of context and failing to appreciate our genuine wishes. Instead, he recommended that for those who genuinely wish for their life not to be artificially extended, to make an Advanced Decision or appoint someone with a Lasting Power of Attorney.

Dr Pemberton suggested this new guidance was especially troubling, because it follows a trend in which more “complex ethical decisions are now essentially in the hands of medics”, and risks becoming “Euthanasia by Stealth”. In particular Dr Pemberton highlighted 3 instances of this trend. First, a test case in which “a 74-year-old woman in a coma could have her feeding tubes removed” because a judge considered an email to her daughter in which she said ‘I am still haunted by how he ended up… Get the pillow ready if I get that way! Love Mum.’ not a throwaway remark. Secondly, a judgement from the Supreme Court in 2018 which ruled doctors are no longer required to seek the approval of a judge when removing CAHN. Thirdly, a “leaked” “draft guidance” from the BMA in 2018 which indicated that “doctors should be able to end the lives not only of patients who are in a minimally conscious vegetative state, but also patients with dementia or other degenerative diseases if they can’t feed themselves”.

My Death, My Decision advocates for the law on assisted dying to change, only for those who are mentally competent adults, with incurable health problems that result in their perceived quality of life falling permanently below the level they are able to accept, providing this is their own persistent request. Consequently, the new guidance from the BMA does not impact upon MDMD’s objective. However, we agree with Dr Pemberton and would encourage anyone, would rationally prefer not to continue life extending medical interventions, if they lost capacity, to make an Advance Decision or Lasting Power of Attorney appointment.

This being said, we note Dr Pemberton’s discussion with interest and believe it merits a fuller investigation.

Can a tweet really end my life? Probably not.

The law on decisions about withdrawing CAHN for those without mental capacity is clear. In the absence of any advanced planning, the 2005 Mental Capacity Act and recent 2018 Supreme Court judgement state, any act/ decision for a patient who lacks mental capacity must be made in accordance with their “best interests”.

Hence the key question for any medical professional is whether it is in a patient’s “best interest” to remove CAHN. Moreover, it is a long established legal principle, that someone’s best interests may not in all cases be the extension of life. Indeed, MDMD notes with interest that Dr Pemberton himself identified situations in which he would prefer for his life not to be extended.

Admittedly, the notion of “best interests” is a somewhat elusive concept. Hence, to help doctors, the Mental Capacity Act sets out a number of factors which are designed to guide this assessment.

For example:

  1. Someone must consider whether it is likely the person has some capacity in relation to the matter
  2. If the person is likely to have some capacity, they must be encouraged to participate as fully as possible in any decision affecting them
  3. When the determination reflects life-sustaining treatment, someone must not be motivated by a desire to bring about a death
  4. Someone must ascertain as far as reasonably possible, the person’s past and present wishes and feelings (in particular any written statement made at the time when they had capacity); the belief and values that would be likely to influence the decision; and other factors would the person would be likely to consider if able.

According to the BMA’s new guidance, “decision-makers must start from the strong presumption that it is in a patient’s best interests to receive life-sustaining treatment, but that presumption can be rebutted if there is clear evidence that a patient would not want CAHN provided in the circumstances that have arisen”.

Two significant developments are that the BMA clearly say doctors must consider the notion of best interests from the patient’s point of view, and that doctors are ultimately responsible for this assessment. This is significant, because it clearly states that doctors cannot be motivated by their own preferences, but instead solely by the interests of their particular patient. Additionally, it recognises that the notion of “best interest” is subjective and therefore what may be the “best” for one person, may not necessarily be as good for someone else. It is also significant because it clearly states “decisions [about best interests] must be made by the clinical team on the patient’s behalf”. Thus, whilst a family member or friend might be able to advise a practitioner on what their patient’s preference might have been, they are not allowed to make the decision for the patient themselves.

So where does “social media” fall into the mix? As the Mental Capacity Act and new BMA guidance says, even if family members cannot make a decision about best interests, they can help a doctor “ascertain any views, wishes, values or beliefs of the patient”.  For example, they could say that their loved one had previously indicated that they did not want life extending treatment.

However, whilst family members are predominately motivated out of entirely compassionate reasons, the BMA recognises that a minority might have ulterior motives. Hence they encourage as best practice, “seeking views from a number of different people and seeking examples or evidence to back up statements”. In effect a comment on social media may be such an example or evidence.

However, it is important to stress that whilst social media could be an example, it has always been the case that doctors should look to written statements to ascertain their patients views. Further, social media itself is only listed as one example of relevant information written down in the BMA’s guidance. It also suggests something in a diary, a letter or email could be an “example” of something written down, which indicates a preference.

It is also important to stress that in addition to information written down, doctors are advised in the new guidance that they should seek to learn

  1. The nature and length of the relationship with the individual
  2. A description of what the patient was like before becoming ill – work, hobbies, likes, dislikes, what is important to them etc
  3. Any examples of things the patient said or did that might indicate the view that they are likely to have of their current situation
  4. Any religious, spiritual or ethical beliefs the person held and how these might impact on the decision
  5. Aspects of the patients personality that might be relevant to the decision
  6. Whether they believe the patient would want CAHN provided/ continued and their rationale for that assessment

Hence, Dr Pemberton’s claim that we are all one tweet away from an end of life decision, is grossly exaggerated. Doctors are compassionate and caring professionals, who with very few exceptions only ever want the best for their patient, and would obviously exercise common sense when assessing the importance of a comment on social media.

Moreover, even if the stark situation Dr Pemberton’s described did exist, he overlooks the litany of safeguards the BMA recommends for doctors to follow. For example:

  1. A Doctor should seek a second clinical opinion where it is proposed to stop or CANH
  2. “Where there is uncertainty or disagreement about whether CAHN is in the patient’s best interests … legal advice should be sought and an application to the Court of Protection should be made”.

More Detailed Analysis

The test case, Dr Pemberton referenced was Salford Royal NHS Foundation Trust and Mrs P. Although, it was reported in the Daily Mail, Mrs P had her CANH withdrawn because of an email, this is somewhat misleading. At paragraph 39 of the judgement, Mr Justice Hayden listed a number of factors which indicated it was in Mrs P’s best interests to have CANH removed:

  1. The daughter of Mrs P had informed the medical staff early on that her mother would not have wanted the indignity of her present situation
  2. The daughter had been so confident that her mother had expressed this view that she was able to go through years of emails before finding the particular claim in question
  3. Mrs P’s neighbour informed the court that they had both discussed how they would not like to “linger with [an] illness”
  4. The Official Solicitor acknowledged that there was clear and compelling evidence of Mrs P’s wishes.

Whilst it is true that the email had featured prominently in the case, Mr Justice Hayden cautioned that it could simply “be regarded as recording one of those casual throw away remarks that we all make from time to time [making it] ultimately meaningless”. It was only because of the “context” of the email, that he considered it significant.

Turning to the 2018 Supreme Court case of NHS Trust and Others v Y, the Supreme Court clarified that there had never been a law, only an understanding of good practice, that doctors should apply to a court before CAHN can be removed. Hence in cases where families and practitioners in agreement, it may not be necessary to seek judicial permission, if the delay would cause considerable distress to families. However, the court stressed that if it transpires that there is a difference of medical opinion, or lack of agreement from a person with a patient’s welfare, regarding the “best interests” of the patient, a court application “can and should be made”. Hence, the case cannot have  remove a safeguard, since it did not exist in the first place, but merely clarify when additional support should be sought. (Advice similarly reflected in the BMA’s new guidance).

Finally, the leaked draft claim originates from a story featured in the Daily Mail who said that the draft document said:

“Those patients who have a recognised degenerative condition – such as advanced dementia, Parkinson’s or Huntington’s disease – that is likely to result in the patient being unable to take sufficient nutrition orally … Due to the degenerative nature of their condition, these patients are on an expected downward trajectory and will inevitably die, usually as a result of their underlying condition, although perhaps not imminently and could, potentially, go on living for many years.”

A statement which still appears in the final edition of the BMA’s final guidance.

Reflecting on the BMA’s judgement, MDMD’s associate coordinator Dr Colin Brewer said: “It is quite understandable that many people are concerned about progressive neurological conditions such as dementia. Dementia is now the leading cause of death in the UK. However, it would be wrong to think that those suffering from Dementia, automatically lack capacity. Those at the early stage of their condition such as MDMD’s Alex Pandolfo, still have capacity and therefore would not be affected by this guidance.”

Interestingly, the BMA’s guidance stressed that when someone is given CANH it is not normally as a result of their degenerative condition advancing. Instead, it is normally the case that someone is given CANH because of a concurrent, but entirely unrelated, additional condition, which means someone cannot take enough nutrition orally. Reflecting this, the BMA’s guidance say that where someone with a degenerative condition does receive CANH for a different, but concurrent, illness it is advisable for “extensive best interest assessments [to take place, including] best interest meetings”.

My Death, My Decision firmly believes that those suffering from dementia deserve the same level of respect and compassion as anyone else. Thus even if it were the case, which it is not, that “dementia” was the underlying reason why CANH existed in the first place, we believe that if it is in someone’s best interests not to continue treatment, they should not be discriminated against. However, in saying this we are encouraged by the BMA’s recognition of the importance of safeguards for neurological degenerative conditions including advising doctors to seek “a second opinion from a senior independent clinician”.

Therefore will they “pull the plug on your life support … because of a message you left on facebook”? Probably not. But the overriding advice really should be for people to write an advance decision. This clarifies for all concerned what your wishes are. It can also provide a legally binding refusal of CANH under conditions which the person specifies. MDMD would like to see encouragement to write Advance Decisions as part of routine NHS healthcare checks and end of life care and planning discussions.

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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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Scottish Parliament removes time limit in definition of “terminally ill”

MDMD are delighted to learn that the Scottish parliament has removed any time limit from its definition of “terminally ill” in their Social Security (Scotland) Act 2018.  The story was reported by the BBC and the Guardian.

The Guardian article states “There were a number of significant last-minute amendments to the legislation, including the removal of any time limit on terminal illness. It was brought by the social security minister, Jeane Freeman, after senior medical professionals called for its inclusion. Current rules for disability benefits and universal credit say a patient must have six months or less to live before their illness is classed as terminal.”

In the debates over right-to-die legislation, “terminal illness” is also one of the possible criteria that has been considered, and is used in some jurisdictions such as Oregon and other US states where assisted dying is legal, (but not closer to home in Switzerland, the Netherlands or Belgium). In the right-to-die context in the UK the medical community have argued that a 6-month criterion is impossible for them to accurately determine, and would make the working of right-to-die legislation impossible for them. It is good to see this medical argument now being applied to other uses of the 6-month criterion, if only limited to Scotland at present.

The relevant wording from the Scottish Act is “… an individual is to be regarded as having a terminal illness for the purpose of determining entitlement to disability assistance if, having had regard to [guidelines issued by the Chief Medical Officer], it is the clinical judgement of a registered medical practitioner that the individual has a progressive disease that can reasonably be expected to cause the individual’s death.”

Given that dementia is the leading cause of death in England and Wales, it seems clear that dementia should now qualify as a “terminal illness” in Scotland, for this legislation, at least by the time that it seriously impacts a person’s ability to live independently. MDMD has always argued that dementia should be considered an acceptable reason for requesting a medically assisted suicide, by someone who still retains mental capacity, and that consequently any six-month criterion is too restrictive. The change in interpretation of “terminally ill” in Scotland is a small sign of movement towards a better understanding of this issue. We hope that in England and Wales, senior medical professionals will follow their Scottish counterparts in causing a similar redefinition.

We hope that those organisations campaigning for a change in the law on assisted dying in Scotland will now broaden their campaign to fully embrace the new Scottish definition of “terminally ill”, if their policy does not currently endorse this. This would help gain the support from those in the medical community in Scotland who argued for the redefinition.

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Eamonn Holmes wants an assisted death in Switzerland if he has dementia – but he shouldn’t rely on others.

Breakfast TV News presenter Eamonn Holmes has been widely quoted in the media for openly saying that he would prefer a medically assisted death if he developed dementia. A Sun on Sunday article strongly supports him. A  Daily Mail article also covered the story, its comments show strong support for Eamonn’s view. Describing his fear of dementia he says:

“It’s what everyone dreads. It’s a long, lonely walk — one I would never want to go on.

“I genuinely say to my children and my wife, ‘Take me to Switzerland and press the red button. That’s what I want’.

While MDMD sympathises strongly with Mr Holmes, he, and people sharing his view, need to investigate his wish a little more carefully. Euthanasia is not an option in Switzerland. You can’t just “take someone to Switzerland and press a button”. The person themselves must make the request for a medically assisted death; must have the mental capacity to make a life ending decision; and must take the final life-ending action themselves, in full knowledge that it will kill them. This is possible in the earlier stages of dementia, but not in the latter stages when mental capacity is lost. Choosing exactly when to make that final choice is very difficult for dementia sufferers, as described by MDMD supporter and campaigner Alex Pandolfo, who himself suffers from Alzheimer’s and has the green light to go to Switzerland for an assisted suicide when he chooses. Sufferers understandably want to continue living, even with disabilities, as long as they consider their quality of life to be acceptable, but if they want an assisted death in Switzerland they need to take action to end their life before they lose their mental capacity.

Dementia is now the leading cause of death in England and Wales. People increasingly realise how unpleasant the final stages can be, both for the dying person, and for those who witness the person they knew ceasing to exist long before they actually die.

Sun on Sunday columnist Karren Brady makes a strong case in support of Eamonn Holmes’ position. In her piece titled “Dementia sufferers should not have to leave the country to die with dignity“, she says:

“I fervently hope that in the not-too-distant future it will be possible — when we are young enough, fit enough, and still in our “right minds” — to fill out a form or card in the same way we do now with organ donation declaring our end-of-life wishes.”

This is similar to MDMD’s suggestion of an extended advance decision. Such a document would clearly demonstrate that the person had considered this option carefully for a long time, rather than being coerced into requesting an assisted death when they were vulnerable. However, MDMD propose that a dementia sufferer would need to take their final life-ending action while they still have the mental capacity to understand the action they are taking, as is the case in Switzerland. There are a number of reasons for this:

  • Asking others to decide when to end your life is a big ask. Doctors and relatives could be understandably reluctant to carry out your wishes if you were unable to clearly and unambiguously re-confirm your wish at the time of assisted death. (MDMD understand that in Belgium, where this is possible, in practice it is rarely carried out – meaning that the person’s wishes are not always carried out.)
  • Cases in the Netherlands demonstrate the problems that can arise with conflict between a dementia sufferer’s earlier clear written request for euthanasia, and their apparent change of mind when they have lost capacity to understand their situation.
  • There needs to be absolutely no doubt that the person hasn’t truly changed their mind, but forgotten to change their advance request.

MDMD thank Eamonn Holmes for the publicity he has given to this important issue. His comments emphasise that although dementia is a terminal illness, proposals for a right to die law which is restricted to those within six months of dying and who retain mental capacity, would not be of use to those suffering this common, but widely feared form of death. MDMD believe that we need a broader approach that allows those dying of dementia to have the good death they wish for.

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Should we be able to choose our own death?

The BBC Ideas website has recently added a short video titled ‘Should we be able to choose our own death?’. Although MDMD had no part in its making, it demonstrates one really good way of achieving our goal.

It is a personal opinion piece by philosopher Nigel Warburton. He starts by asking us to imagine a world where we get what we all deserve: a good death. He then continues to describe his utopian vision of “Good Death Centres”.

The safeguards he proposes are well aligned with those of MDMD. To receive medical assistance to die at one of Warburton’s proposed “Good Death Centres” the applicant must satisfy the following conditions:

  • Undergo thorough psychological examination and counselling by trained experts with experience in end of life situations.
  • Have sufficient mental capacity to make a life-ending decision
  • Demonstrate a genuine desire for a medically assisted death
  • There must be a good reason, such as a painful terminal illness or the first signs of dementia
  • The person must have a well informed understanding of their situation and the alternative options available

As the video says at the end… “Its a comforting thought”.

Another comforting thought is provided by palliative care doctor Kathryn Mannix in her video ‘Dying is not as bad as you think’ in the same BBC Ideas series. MDMD agree with her that death needs to be talked about more and no longer be treated as a taboo subject. Mannix describes a peaceful, natural death. For those where this sort of death comes quickly, without a large amount of trauma, distress and loss of dignity leading up to it, Warburton’s Good Death Centres are not necessary. However, Mannix doesn’t give information about the likelihood of various causes of death, and of having the sort of good death she describes. We know, for example that in England and Wales dementia is now the leading cause of death, and that many more people die with it than of it. People who have witnessed people dying with or of dementia, often say that they would not wish to die that way themselves. Other causes of death are discussed here.

MDMD suggest that the truly comforting thought is to have both options well funded and available: excellent palliative care, with the safeguarded option of a medically assisted death, if this is necessary for the patient to have what they consider to be a good death, in their particular circumstances.

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Extending the Oregon Right to Die Law. Evidence of a “Slippery Slope”?

A recent article in the Washington Post describes moves in Oregon, USA to try to extend their Death with Dignity Act to include help for those suffering from degenerative diseases such as Motor Neurone Disease, Parkinson’s and Alzheimer’s. Related discussions are taking place in other US states and in Canada. For example, a recent paper published in the academic journal Geriatric Nursing reports that 83% of a sample of elderly care nurses in Quebec were in favour of extending the Medical Aid in Dying legislation to include incompetent patients who are at the terminal stage of Alzheimer disease, show signs of distress, and have made a written request before losing capacity. In Ontario a recent legal case indicated a broader interpretation of the “reasonably forseeable” death requirement in their Medical Aid in Dying legislation, allowing it to cover someone with chronic osteoarthritis. In interpreting the law the judge explained “the natural death need not be connected to a particular terminal disease or condition and is rather connected to all of a particular person’s medical circumstances.”

The Oregon law has been in effect for 20 years without extension, but it is limited to those who have a life expectancy of six months or less, and who have sufficient mental capacity to make a clear life-ending decision. MDMD has consistently argued on behalf of those who are suffering unacceptably and incurably, but whose life expectancy is longer than six months. We are particularly concerned about those, like Alex Pandolfo, who suffer from dementia, which can be very unpleasant in its final stages, and is now the most common cause of death in England and Wales.

The Oregon law has been used as a model for right to die legislation in other US states, such as California and Colorado. An attempt to use the Oregon model for the UK was rejected by the House of Commons in September 2015. One of the arguments used by those who oppose even this limited form of right to die legislation, is that it would be the start of a “slippery slope” leading to much broader legislation in future. Is the current debate in Oregon and elsewhere evidence for this?

MDMD think not. However, it may be the next step along a carefully considered and difficult path towards a safe, compassionate and workable approach to dying in our modern world of advanced medical sophistication, where people live for much longer, but where more people are enduring a long period of suffering before their eventual death.

It is helpful to look back at other changes in legislation to see how they have been introduced. In 2018, in the UK, it is appropriate to consider the right to vote. This year we celebrate the 100th anniversary of women first gaining the right to vote. But not all women. Only those who were “over the age of 30 who were householders, the wives of householders, occupiers of property with an annual rent of £5, and graduates of British universities”. It was another 10 years before all women over 21 had the right to vote, bringing them in line with men, and not until 1969 when the voting age for both men and women was reduced to 18. Was this a “slippery slope” that should have been prevented? In 2018 it would be a brave person to suggest that it was. Rather, it was a cautious, step-by-step, considered, and hard-won campaign for equality and representation.

Another example of developing legislation is the introduction of the “horseless carriage”. In the early years, (1865-1896), for public safety, self-propelled vehicles had to be preceded by a pedestrian waving a red flag or a lantern. Since this was relaxed, cars (and their drivers) have caused much loss of life and serious injury. They still do. Importantly, the lives lost are not those of incurably suffering people who, after careful consideration of their likely future and the available alternatives, have decided that their best option is for their lives to end. Instead the lives lost in “road casualties” are predominantly those of healthy, active, often blameless, people whose lives are tragically cut short.  Although a succession of legislative changes have improved car safety considerably, the risk is still there. Instead of banning cars, society accepts this risk, killing on average 5 people per day in Great Britain in 2016, and seriously injuring 66 people per day.  This risk is far greater than even the worst fears of those concerned about the risks of possible abuse of any proposed assisted dying legislation. Was allowing self-propelled vehicles, and subsequently weakening the restrictive red-flag law a slippery slope that should have been resisted in order to protect vulnerable people: passengers; pedestrians; cyclists etc.? No, a balance was found which society deemed acceptable. Many laws were gradually introduced to improve road safety when the risks were found to be unacceptably high: driving tests; vehicle safety checks; compulsory wearing of seat belts; drink-drive limits etc.

Many analogous situations exist, for example legislation concerning gun control, where public safety, in particular protecting “vulnerable people“, has to be balanced against freedom of choice for the individual.

In considering what assisted dying legislation to adopt, and how any first step might later be extended, it would obviously be preferable to get the “right” law in the first place. In practice, in some jurisdictions, a cautious, step-by-step approach may be required. It is clear to MDMD supporters that the current Oregon law doesn’t go far enough, as it leaves many who suffer incurably and intolerably without the compassionate assistance to die they would like. We welcome the debate to broaden the Oregon law and wish the campaigners there success. We hope that the UK will learn from the Oregon experience and adopt a broader initial step, taking into account experience from other countries such as Switzerland, the Netherlands and Belgium.

What is also clear is that talk of “Slippery Slopes” is not appropriate in a serious discussion of how to introduce legislation which is both compassionate, in allowing people the options they want to avoid suffering at the end of life; and safe, in its protection of vulnerable people.

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Living with Dementia – comparing two cases of Early Onset Dementia

The Observer recently published a story about Wendy Mitchell, an Alzheimer’s sufferer whose memoir, ‘Somebody I Used to Know’, has recently been published. The article gives in interesting insight into how Wendy copes with the devastating diagnosis of dementia at the age of 58. Wendy is described as an energetic single mother of two adult daughters who had worked as an NHS administrator.

The Observer story has some interesting parallels with the case of Alex Pandolfo who received his Alzheimer’s diagnosis when he was 61. Like Wendy, Alex was a capable, strong-willed professional, firmly in control of his own life and very unwilling to give up easily. Alex’s story, published in the Mail on Sunday in May 2017, was remarkable as he explained his decision to seek an assisted suicide in Switzerland rather than endure the final stages of dementia. Wendy, at least in the published article, does not appear to go that far in her thinking, but the article does say that “She hopes that death will come before she is dismantled by the illness, or that the law will be changed so she will be able to choose her time of leaving”. Both Wendy and Alex share a common desire for a self-determined, peaceful death, rather than having to live through the inevitable disintegration of their personality that they know the final stages of their disease will bring. Their desire is echoed, by the fictional lead character with early-onset dementia in the film Still Alice, considered to be “shockingly accurate” by fellow sufferers.

Dementia is now the leading cause of death in England and Wales. Although most cases are detected at a much older age than Wendy and Alex, 5% of dementia sufferers have early-onset dementia, and there are fears that this is an under-estimate of the true incidence.

Following the article about Wendy, I talked again to Alex Pandolfo to see how his story is unfolding, and to look for parallels between his experience and Wendy’s.

A new sense of purpose

Wendy describes how she has managed to keep a positive approach to living with dementia through finding a new sense of purpose in publicising what dementia is like – her book is just one example of this which “has become her life’s work for as long as she is able to do it.” Alex has found similar outlets. No longer able to supervise university research, he devoted more time to his role as advocate for disadvantaged young people. As his condition worsened he had to stop this and is now concentrating on right-to-die campaigning – fighting for the right for people to have a medically assisted death, if that is their wish, and if their incurable illness causes them an unacceptably low quality of life – without having to travel to Switzerland, as Alex intends. He was advised to do something that he didn’t do before. “It’s important to keep my brain active and engaged” Alex says, “It gives my Alzheimer’s some value.” I’m not sure that right-to-die campaigning was quite what the professional who offered that advice had in mind, but it seems to serve the purpose.

Humour is important to both Wendy and Alex. Wendy finds it through contact with people in a similar situation to herself. This hasn’t worked for Alex. Instead he tells his friends “If you feel like taking the piss, take it” – a Mancunian who is proud of his abrasive northern wit.

I explored with Alex how things had changed since his Mail on Sunday article eight months ago. His view, that he wants to end his life in Switzerland before he is unable to live independently, has not changed, but he did admit to a “wobble” as he recovered from a minor stroke a few weeks ago. Fortunately, his previous mental capability has largely returned, but he describes his symptoms as having gone from “mild” to “moderate”. He notices his sense of time diminishing. He has to rely much more on alarms – something he never had to do. On the plus side, long train journeys can disappear in a flash.

I’m becoming the very antithesis of who I was.

Another change is more concerning. “I find myself getting angry so quickly. Something that I would have found innocuous now irritates me much sooner. I feel anger now like I’ve never felt in my life. That worries me.” Alex is so concerned by this development that he says this may make him take his trip to Switzerland sooner. He doesn’t want to end his life as an angry, possibly violent person. It wouldn’t be “him”.

Soon after his article was published last year Alex got the “green light” for his assisted death in Switzerland. (This means that the preliminary medical investigations have been carried out and the Swiss doctor has indicated that Alex’s conditions meet the criteria set by the legal and medical rules in Switzerland. Unlike the Bill rejected by the House of Commons in 2015, assisted suicide in Switzerland is not restricted to those who are terminally ill. Alex is free to arrange a date for his assisted suicide there when he likes – though additional checks at that time will confirm that he still retains sufficient mental capacity to freely decide to end his life.) How did he receive the news that he had the green light? “I can’t tell you how liberated I felt. Elated.” People told him he was looking better, healthier, and that he was presenting himself in a more positive way. “It really improved my feeling of quality of life.”

My independence is crucially important to me.

In the Mail on Sunday article about Alex, Dr Peter Saunders from the campaign group Care Not Killing, which opposes a change in the law on assisted dying, was quoted as saying “The best way to help dementia patients is to give them the best possible care.” Why does Alex think this wouldn’t be appropriate for him? “I really believe my independence is crucially important to me”, though he agrees that this is a personal decision and that good care should be available to those that would prefer it. He went on to describe in detail how his father suffered from a related illness. “I cared for my Dad with dementia, for five years. He was a strong man.” Alex explained how during his life his father had had to cope with both severe physical pain and many social difficulties. “He became incontinent. Every time he needed to be cleaned, tears ran down his face. No dignity. Whenever I showered him there were tears in his eyes. I did everything possible for him.” Alex was clearly emotional at the memory. We paused the conversation. “It was 13 years ago and I still get upset thinking about it”, Alex apologised. “I would not wish that on anybody, and I don’t want it for me. It is impossible to give good care to someone like that.”

Alex was full of praise for the attitudes of the healthcare professionals who have been treating him, despite them being unable to help him with his desire for a medically assisted death. “My GP has been 100% great.” After requesting a DNR and completing an Advance Decision, Alex mentioned his desire for an assisted death in Switzerland. “You do realise that I’m not permitted to discuss this, but I genuinely and honestly believe you should have the choice.” His GP told him.

When he was admitted to hospital, Alex was open with nurses, junior doctors and consultants about his plans for a good death in Switzerland. Everyone seemed to respect and understand his position. “I probably shouldn’t be saying this, but I totally agree with what you are saying” he was told by one of the professionals. It is surely unacceptable that our healthcare professionals are left afraid to discuss a patient’s end of life wishes with them if they involve, or may involve, an assisted death. Why no “patient-centred” care at this point? What damage might this be doing to the doctor-patient relationship, at a critical time in a patient’s life – even if the only medically-assisted options available are in Switzerland?

What is Alex finding more difficult to cope with now? “I’m becoming insular. I feel safe inside my house and am becoming uncertain about going out of the front door.” A keen Manchester City supporter – “This is probably my last season going to matches. The excitement just isn’t there anymore for me.”

Still happy? “Not as happy as I have been. I’m dwindling on a whole range of fronts.” But there’s still an optimism in his voice – “I’ve always been a problem solver – a do-er”.

After our conversation I’m left wondering if, and when, Alex will make use of his green light. Perhaps another unpredictable stroke will prevent him making the journey? – or his increasing fear of venturing outside will make the prospect too traumatic?

The words don’t come.

Alex is still very articulate in his speech, though his writing is more limited, and he complains of being less articulate than he was. “The words don’t come”, he complains. Wendy had assistance from a journalist in writing her book. Both seem to be impressive personalities, facing dementia with a positive attitude for as long as they can, determined to make a difference, right to the end… until the words don’t come anymore. But they don’t want to suffer the last bit… and if that is their choice, why should society make them?

Phil Cheatle

30th January 2018

Update March 2019:

Film maker Mark Scullion made a short film about Alex’s experience living with dementia. This sensitive film gives an insight into Alex’s personality and the difficulties of his condition. The film won the Royal Television Society Awards for Factual film 2019

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Dementia and Alzheimer’s increasingly the leading cause of death

In October 2016 the Office of National Statistics reported that in 2015 dementia and Alzheimer’s were now the leading cause of death in England and Wales. We discussed this in a latest news article then. A year later they have now published data for 2016, which shows this trend increasing.

Dementia and Alzheimer’s accounted for 12% of all deaths in 2016, (up from 11.6% in 2015). For the over 80’s, this rises to 18.9% (up from 18.1% in 2015).

By way of explanation the ONS say, “Although general increases in longevity and improved treatment of other conditions are part of the reason for this increase, improvements in recognition, identification and diagnosis of dementia and Alzheimer’s disease have also contributed.”

The final stages of these frightening diseases are something that many of us would like to avoid. This is a strong reason why MDMD seek more wide-ranging assisted dying legislation than proposals which are limited to helping the “terminally ill”, where this is interpreted as having a life-expectancy of six months or less. Some people, like MDMD supporter Alex Pandolfo, plan to end their life in Switzerland, rather than risk suffering the end stage of Alzheimer’s disease. While this may not be as good a death as he might wish, MDMD quite understands why people like Alex choose this option, instead of suffering like Joan Cheatle for example.

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Preferences for care at end of life when mental capacity is diminishing

An interesting scientific study of attitudes in UK and USA towards end of life care and assisted dying in the face of worsening dementia, was published in April 2017 in the peer reviewed on-line journal Plos One:

Clarke G, Fistein E, Holland A, Barclay M, Theimann P, Barclay S (2017) Preferences for care towards the end of life when decision-making capacity may be impaired: A large scale cross-sectional survey of public attitudes in Great Britain and the United States. PLoS ONE 12(4): e0172104. https://doi.org/10.1371/journal.pone.0172104

The full text can be read online or downloaded as a pdf free of charge.

The study was done by researchers at Cambridge University, Department of Public Health and Primary Care and was reported in an article in Cambridge News.

There are many interesting features of the study:

  • Instead of asking a simple yes/no question about someone’s views on assisted dying it asks respondents what they would like for themselves in a series of worsening situations in a fictional, but all too realistic scenario.
  • It covers the situation where the dying person’s ability to make decisions for themselves is impaired. This is of increasing importance now that dementia has overtaken heart disease as the leading cause of death in England and Wales. Many more people die with dementia rather than of it.
  • The survey shows how people have significantly differing views of what they would wish for themselves. It highlights the difficulties of meeting, and safeguarding, people’s differing wishes.
  • One of the significant findings was that ‘there was a high prevalence of preference for “measures to end my life peacefully” when decision-making capacity was compromised’.
  • The data suggests that most of the people who would prefer “measures to end my life peacefully” to “artificially sustained life”, would only prefer this in the later stages of the scenarios presented. The paper points out that by this stage, assisted dying laws like those available in some US states do not provide what people appear to want. (A similar law was rejected by the House of Commons in 2015, but despite that, this is still the approach advocated by Dignity in Dying). These laws allow assisted dying for those who have mental capacity; have a life-expectancy of 6 months or less; and are physically capable of taking life ending medication themselves. The problems with such laws, in the context of the scenarios considered in this survey, are that by the time most of the people who expressed a preference for “measures to end my life peacefully” would want that option:
    • The person no longer has the mental capacity to make the decision.
    • Their life expectancy may be more than 6-months at the time they wish their life to end.
    • By the time their life expectancy is less than 6-months, they may no longer have the physical ability to take life-ending medication independently.
  • A small proportion of respondents (3.9%) chose “measures to help me die peacefully” in the first stage of the deterioration scenarios, where they were “living in care home, missing meal times for unknown reasons”. This proportion rose to 10% by the third stage, which included some short term memory loss and choking, but before mental capacity was lost. (See Fig 3 in the paper). Most MDMD supporters would fall into these categories. One particularly interesting finding is that this view seems more commonly held in the UK than in the USA.

The paper concludes that “it is challenging to respect the longstanding values of people with dementia concerning either the inviolability of life or personal autonomy, whilst protecting those without decision-making capacity.”

MDMD’s approach to these issues is:

  • Raising awareness of the existing right to refuse treatment, including artificial feeding and hydration, while a person still has mental capacity. (People also have the right to medical support if they choose to stop eating and drinking.)
  • Strongly recommending that people take advantage of the current right to make an Advance Decision to refuse treatment in the event that they lose mental capacity.
  • Campaigning for a law that allows medical assistance to die for those suffering from incurable illnesses that permanently reduce their quality of life below the level they are prepared to accept, provided:
    • They have the mental capacity to make a life-ending decision.
    • The decision is well informed and all alternative options, including palliative care, have been carefully considered and found to be unacceptable.
    • The decision is persistent. (We recommend anyone who believes they would want to be able to take advantage of such a law to write a statement to that effect at the same time as making their advance decision. Such a statement would provide evidence of a long-term, well considered wish for the option of an assisted death. This would give confidence to anyone assessing a request for assistance to die, that the requestor had not been coerced.)

The law we advocate would only help people before they lose mental capacity. We regard this as an important safeguard which avoids the difficulties doctors and relatives would face in making life ending decisions for someone incapable of deciding for themselves at the time. When mental capacity is lost, decision making would continue, as today, to be based on the person’s advanced decision to refuse treatment, and good medical practice to relieve suffering, including double effect and terminal sedation.

The research suggests that significant public education is necessary to help people understand why they may face the difficult choice of when to request an assisted death. An exacerbated form of this choice exists today for anyone considering a medically assisted death in Switzerland. Not only is mental capacity required, but the person must be able to travel to Switzerland and deal with the associated bureaucracy. Alex Pandolfo describes just this dilemma in a recent Mail on Sunday article.

As people become more aware of the unpleasant implications of continuing life into the later stages of dementia, (the story of Joan Cheatle is an example), perhaps the number of people choosing “measures to help me die peacefully” in the earlier scenarios covered in this research will increase. Increasing awareness is certainly one explanation for why older people seem more in favour of assisted dying.

MDMD welcomes this type of research, as it provides detail on the complexities of the issues, stimulates public discussion and raises awareness.

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Dementia sufferer plans to go to Lifecircle

The Mail on Sunday published a story about MDMD supporter Alex Pandolfo who suffers from Alzheimer’s and is planning to end his life at Lifecircle in Switzerland. It is a significant article as Alex is explaining his reasons before he ends his life. He mentions one of his difficulties as being the timing of when to end his life. He wants to live as long as possible, but not risk leaving it too late, when his mental capacity is lost.

My daily worry is that I won’t time it right and go when it’s too late.

The article is excellent so far as it goes, and has received many comments, almost universally supportive. However, it fails to go into sufficient detail to explain that dementia sufferers like Alex would not be helped by the Bill rejected by parliament in 2015 as that was limited to those with a life expectancy of 6 months or less. By the time a dementia sufferer reaches this point it is highly unlikely that they will have the mental capacity to make a life ending decision. Dementia is now the leading cause of death in England and Wales according to data from the Office of National Statistics.

MDMD campaign for a law that will help people like Alex.

MDMD frequently gets requests from journalists for personal stories of people who want to have an assisted death. If you have a relevant story you would be prepared to talk to a journalist about please let us know. We can provide appropriate press contacts and can provide background and supplementary interviews to help ensure your story is reported correctly. These articles are very important to publicise and build support for our campaign. If you agree with our aims, please consider helping us in this way.

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