Dementia

Dutch court backs assistance to die for people with advanced Alzheimer’s

The Netherlands’ highest court has ruled that doctors can honour euthanasia requests for adults with advanced Alzheimer’s, provided they have signed a written request beforehand. 

Although it has always been possible in the Netherlands for a patient unable to express their will at the moment of death, to receive assistance to die, this ruling has brought further clarity on the law there. Doctors will now be able to help under strict conditions, including that the patient must have ‘unbearable and endless suffering’ and that at least two doctors must have agreed to carry out the procedure. The patient must also have made a declaration that they want assistance before they could ‘no longer express their will as a result of advanced dementia’. 

The latest figures show that the overall number of requests for assisted dying has fallen in the Netherlands, and only two people with severe dementia applied for an assisted death in 2018. 

This ruling follows from an earlier decision in the Netherlands, which acquitted a doctor for helping a 74-year-old woman end her life. The woman, who had been suffering from severe Alzheimer’s, had written a statement saying she wanted to die if she became incapacitated.

Commenting on the ruling, Trevor Moore chair of the campaign group My Death, My Decision said: 

‘Dying in a manner and timing of your own choice relates to the most fundamental of human rights – autonomy. No one should be forced to endure as an illness eclipses their very being or slowly erodes everything which once made them themselves. That’s why we support assisted dying for adults of sound mind who are either incurably suffering or terminally ill, and that’s why the law must change.’ 

‘However, we believe mental capacity is an essential safeguard within any system which permits assisted dying. We encourage everyone in the UK, suffering from Alzheimer’s, who wants greater control over their end of life care, to set out their wishes in an advance decision or through a lasting power of attorney.’

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Do Alzheimer’s sufferers have to choose assisted dying too soon?

Leila Bell, an 85 year old Canadian, suffered from early stage Alzheimer’s disease. She died in August 2019 using the Canadian Medical Aid in Dying (MAID) legislation. However, in an in depth interview shortly before her death, she explains that she is angry that she had to end her life as soon as she did, because she was afraid that if she delayed, she might lose her mental capacity. Mental capacity at the time of an assisted death is one of the safeguards in the current Canadian MAID legislation.

In her video Leila Bell says: “If I had been able to do an advanced request, I would not have had to decide to make that decision to die now. … I have been forced to decide now because I fear that at some future time, I will not be able to request it due to the compromise in my brain being much more severe.”

Canadian MAID providers have drawn up guidelines on how to best help people like Leila. The Canadian government is considering extending the MAID legislation, possibly to include those like Leila Bell. In Switzerland, like Canada, those eligible for a medically assisted death must have mental capacity at the time of death. The Netherlands and Belgium permit euthanasia by an advance request, but there are very few cases where this happens.

Assisted dying in cases of dementia raises a number of issues. See this page for a detailed discussion.

Responding to the story, MDMD’s Lead Campaign Commentator, Phil Cheatle said:

‘It is easy to sympathise with Leila’s concern, but the issues involved are far from simple. It is a large step to ask someone else to decide, on your behalf, when to end your life. This is especially difficult for someone who is still conscious but lacks mental capacity.’

‘Dementia is now the cause of 1 in 8 deaths in England and Wales, a figure that rises to 1 in 4 deaths for women over 80. Advanced dementia is a condition many would wish to avoid. 88% of people consider the option of medically assisted dying to be acceptable for Alzheimer’s patients, before they lose mental capacity, in at least some cases. MDMD is watching developments in Canada closely in the hope that the UK can learn from their experience.’

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New Guidelines for Canadian Medical Assistance to die in early stage Dementia cases

MDMD commented recently on how the current Canadian Medical Aid in Dying (MAID) legislation was now starting to be used in some early stage dementia cases. A recent 30-minute radio programme broadcast by CBC (Canadian Broadcasting Corporation) discusses another case in depth. The programme and a detailed summary are available on their website.

This is not an expansion of our law … This is a maturing of the understanding of what we’re doing. Dr Stefanie Green

Gayle Garlock was a retired university librarian who loved to read. When early stage Lewy-body dementia robbed him of his ability to read, his quality of life reduced unacceptably. For him that was intolerable suffering as reading was fundamental to who he was as a person.

Dr Stefanie Green is an assessor and provider of Assisted Dying in British Columbia. She is also the current president of the Canadian Association of MAID assessors and providers, (CAMAP).  She first met Gayle Garlock in March 2018. At that time she was unsure whether he met the conditions for assisted dying in Canada, or whether she would personally be willing to help him. She was understandably concerned that if she helped Gayle and was later found to have acted improperly she could face a 14 year jail sentence.

The more we talk about this topic … the better our deaths will be, however we want to shape them. Dr Stefanie Green

Dr Green and her colleagues at CAMAP spent many months considering the issues around MAID and early stage dementia, as it relates to the Canadian law. They have produced an insightful document providing guidelines for how to assess MAID requests from those with dementia.

The document considers the assessment of three key questions:

  • Whether the patient is in an advanced state of decline in capability;
  • Whether the patient has capacity to make the decision to have MAiD; and
  • Whether the patient’s natural death is reasonably foreseeable.

In discussing the interpretation of “reasonably foreseeable” death, the guidelines cite a legal case which concludes: “Natural death need not be imminent and…what is a reasonably foreseeable death is a person-specific medical question to be made without necessarily making, but not necessarily precluding, a prognosis of the remaining lifespan. […] In formulating an opinion, the physician need not opine about the specific length of time that the person requesting medical assistance in dying has remaining in his or her lifetime.” This shows how the Canadian law is more flexible than laws requiring a specific life expectancy estimate, such as 6 months, used in Oregon and elsewhere. Doctors have long argued that it is frequently impossible to give an accurate time prognosis. This has led to calls for a more flexible definition of “terminal illness” in some jurisdictions.

The CAMAP guidelines argue that as MAID requests will be part way through the mild phase of dementia, the life expectancy of most dementia patients requesting MAID would likely be less than 5 years, particularly in older patients. This is within the intention of “reasonably foreseeable”. In contrast, the guidelines are clear that cases of mild cognitive impairment (MCI) alone would not be accepted for MAID as not all such cases will progress to dementia and the rate of transition is somewhat uncertain. The death in cases of MCI alone is therefore not “reasonably forseeable”.

The guidelines carefully consider at what point a patient requesting MAID is in an “advanced” state of decline, while still retaining sufficient mental capacity to make a valid MAID request. This is a difficult and delicate issue. The guidelines first point out that for a previously highly intelligent person who is now struggling with the cognitive demands of everyday life, advanced decline is clear in terms of the relative loss of ability. However it points out that “advanced” should not be interpreted only as relative to the pre-dementia baseline, but also in terms of how close the patient is to losing capacity due to dementia. The recommendation is that in the case of a patient whose MAID request is refused solely because they are not deemed to have reached an advanced state of irreversible decline in capability, the patient should be reviewed periodically by an appropriate clinician. When it is believed that they are close to losing capacity the clinician should inform the patient that this is the case. The patient can then decide whether to request MAID or delay, on the understanding that delay may result in their losing sufficient capacity and therefore no longer being eligible for MAID.

The guidelines end with three scenarios showing how a safe assessment can be reached.

After studying the guidelines MDMD’s Lead Campaign Commentator Phil Cheatle said:

“It is very gratifying to see medical professionals in Canada working to establish safe guidelines for interpreting the MAID law in dementia cases. This is essential to ensure safe working practice. Both medical professionals and right-to-die campaigners in other jurisdictions have much to learn from the work CAMAP is doing.”

With this framework in mind, in Spring 2019 Dr Green was open to reconsidering Gayle Garlock’s case. He requested a second assessment. Dr Green found that although his condition had deteriorated he still had mental capacity and was also suffering intolerably. She approved his MAID application. Gayle chose to wait until the end of the summer, but after a fall in June he decided to request MAID in July.

Dr Green repeatedly asked Gayle whether it was his choice or his wife’s or his children’s. His consistent answers on several occasions convinced Dr Green that he had not been persuaded by anyone else. Gayle’s assisted death took place in his home on 26th August, following a final check of his mental capacity and wish for an assisted death.

In making her assessments, Dr Green interviewed Gayle on his own. This ensured that there was no one else influencing or prompting his response. It would perhaps be good practice for a video recording of the crucial assessments to be made, with the patient’s knowledge and consent, should anyone question the decision at a later stage, and for the doctor’s personal protection.

MDMD is delighted that Dr Green has agreed to be the speaker at our next meeting for our members and supporters in London in April 2020.

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Medical Aid in Dying for those with early stage Dementia in Canada

Canadians have had legal access to medical aid in dying (MAID), the preferred term there, since June 2016. The Canadian law does not limit MAID to those who are expected to die within six months, as is the case in those USA and Australian states that permit assisted dying, (the ‘Oregon model’). Instead their law uses the phrase “a reasonably foreseeable death” to indicate those who are “terminally ill” in a broader sense.  A further safeguard is that a person requesting MAID must have the mental capacity to make such a decision at the time of their assisted death. So where does that leave those suffering from the various forms of dementia?

Dementia is recognised as a terminal illness, though it takes 7 or 8 years after diagnosis, on average, to cause death. Many others die “with” dementia rather than “of” it. A staggering 1 in 8 deaths in England and Wales are caused by dementia – a figure that has been steadily rising. There is no cure. Dementia sufferers therefore have a death that is “reasonably foreseeable”. In the early stages of dementia, patients have the mental capacity to make a life ending choice. An assisted death in Switzerland has been an option for many years, provided the person has mental capacity at the time. On this basis, the criteria seem clear cut regarding the law in Canada. But MAID practice in Canada has been cautious as the implications of the law come into effect.

The Globe and Mail, one of Canada’s most widely read newspapers, has recently published an in depth account of the medically assisted death of Alzheimer’s patient Mary Wilson. The article considers how the doctors involved carefully considered the case, in terms of the requirements of the MAID law. The doctors decided to take the risk that they were acting within the law, and gave Ms Wilson the MAID she wanted. The College of Physicians and Surgeons of British Columbia spent 10 months investigating the death, eventually deciding that the doctors had acted appropriately. Although this is not a judicial ruling, it should still go some way to reassure other doctors that this course of action is permitted under the current Canadian MAID law.

The issues concerning Assisted Dying in cases of Dementia are complex and need to be considered carefully. The topic is the subject of a new book by Dr Colin Brewer. The developing situation in Canada shows how relevant this topic is. When invited to comment on the significance of this new case Dr Brewer responded:

“This case shows that most dementias are recognised as conditions that will inevitably be fatal unless another lethal illness intervenes. Canada’s MAID law had some built-in flexibility. As doctors gained more experience of MAID, judges could take that into account. Britain should follow this lead from the Old Commonwealth and not feel obliged to adopt the ‘Oregon Model’.”

MDMD is watching the Canadian developments with interest. We have always held the view that those suffering from early stage dementia, while they still have mental capacity to make a life ending decision, should have the option of a medically assisted death. This is currently available in Switzerland, Netherlands and Belgium. We are delighted that these recent developments in Canada are leading to the option being available there too.

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Book Review: O, Let me not get Alzheimer’s Sweet Heaven!

Latest figures from the Office of National Statistics show that the number of deaths attributed to Alzheimer’s disease and other forms of dementia continues to rise. 1 in 8 of all deaths in England and Wales were caused by dementia in 2018. For women over 80 the figure rises to 1 in 4. A defining aspect of MDMD is that we campaign for a change in the law to allow assisted dying for those in early stage dementia, provided that the sufferer still has mental capacity to make a life ending decision. This is the same criterion used by Dignitas and Lifecircle in Switzerland. In a recent poll we sponsored, 77% of those surveyed agreed with our position on this, either “always” or “sometimes” with an additional 11% “rarely”. Only 12% thought it never acceptable. A separate survey in Jersey, using the same questions, showed even stronger support: 86.7% agreed “always” or “sometimes”, with a further 3.3% rarely. Only 10% responded “never”.

This background demonstrates both the importance of the issue of dementia and the high level of public support for the MDMD position. The subject of dementia and assisted dying is complex and raises a minefield of ethical issues. A new book, “O, Let me not get Alzheimer’s Sweet Heaven! Why many people prefer death or active deliverance to living with dementia” is published on 17th October 2019 which provides a clear guide through this minefield. It is written in a style which is very accessible to the general reader, but is backed up with a wealth of academic references for the professional. There are many anecdotes, presented with touches of humour, to lighten an otherwise very dark subject.

The author, Colin Brewer, is a retired psychiatrist who has been involved in the UK right to die movement for over 40 years. In the late 1970’s he served on the committee of the Voluntary Euthanasia Society (now renamed Dignity in Dying). He has been on the Executive Council of MDMD since 2015 and is currently a board member. He is also the convenor of MDMD’s Medical Group. In the introduction he states “I have assessed nearly every British dementia patient who applied to go to Switzerland [for a medically assisted death] in the last few years…“. He co-edited the excellent collection of essays “I’ll See Myself Out Thank You“. With that background he is uniquely qualified to write this book.

The book starts by explaining what dementia is; the varieties; what it is like to watch a person’s decline; and what it feels like to live it, (as far as we can tell). The person you have been all your adult life changes. When you lose mental capacity you no longer remember what you might previously have wished for. Who is the real “you”?

The various forms of treatment and care are discussed. Those with mental capacity have a legal right to refuse treatment (like artificial feeding and hydration, or antibiotics). When mental capacity is lost the wishes of the former self to refuse treatment can be retained through a carefully written advance decision, (living will). A recurring theme throughout the book is the importance of making clear what your wishes are by using an advance decision. Appendices give examples and a pro-forma for an advance decision specifically tailored to those with a dementia diagnosis – though the strong recommendation is to write one long before that stage is reached.

The book then considers a host of objections to changing the law on assisted dying, and the motives behind the groups opposing change. Dr Brewer is a cavalier guide through the ethical minefield, fearlessly considering areas where others fear to tread. No one escapes his scrutiny – doctors, the palliative care community, religious leaders, representatives of disability groups. Comparisons are drawn with abortion and the holocaust. The book is undoubtedly provocative – but with a purpose – to enable evidence-based discussion of important issues and to expose what he sees as fallacious arguments and hidden biases.

The second part of the book considers the choices both the individual and society have now: Do nothing; Do something; Do it yourself; Do it abroad. The book is careful not to give advice on techniques for taking one’s own life, but does not shy away from discussing why some people feel that this is an appropriate option for them – people like Sir Nicholas Wall, the former President of the Family Division, Britain’s most senior family law judge.

At the end of his foreword to the book, neurosurgeon and author Henry Marsh invites you to “Read this book and ask yourself: what will you want for yourself, or for your family, if you are diagnosed with progressive, irreversible dementia? And what right have doctors, priests or politicians to order us how to live, or how to die?” MDMD echoes this invitation. We also suggest that the book would be an excellent gift to doctors, MPs and others with interest or influence in this subject.

It is important to point out that this book is the personal opinions of the author. Clearly there is much agreement with the position of MDMD. However, other than offering comments on initial drafts, MDMD has had no involvement in the production of the book.

NOTE: MDMD has been advised that a few last minute technical difficulties mean that the book may not be available until a few days after the planned publication date of 17th October.

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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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‘Endgame’ Documentary on Assisted Dying Available Online

Endgame is a documentary made over 18 months in 2017/8 by independent film maker Andi Reiss. It has been shown, with much praise, at many film festivals and at independent venues. He has now made it available to view on his Vimeo site. A link is embedded at the bottom of this page.

The film, which lasts 65 minutes, follows the stories of Marie, Omid and Alex: three people contemplating a medically assisted suicide in Switzerland. At points the viewing is harrowing and highly emotional – please take that as a warning and have tissues to hand if you watch it!

The documentary asks hard questions and interviews people central to the debate including: Saimo Chahal, (Lawyer for Omid and previously Tony Nicklinson); Richard Huxtable, (Professor of Medical Ethics and Law, Bristol University); Dr Erika Preisig, (Lifecircle) and Rt Rev Lee Rayfield (Bishop of Swindon).

The final section of the film shows Marie and Omid ending their lives at Lifecircle in Switzerland. The in-depth interviews with them immediately prior to them ending their lives are particularly striking. The footage starkly contrasts, on the one hand the joy and gratitude of two people able to peacefully end their suffering after a long period of careful consideration, but on the other hand, the inevitable sadness at loss of life. Omid clearly found happiness in his final interview, the day before he ended his life. The cries of those he left behind speak for themselves.

Another important aspect of the film is that it shows the speed and ease of the intravenous method of medically assisted suicide used at Lifecircle. By controlling a valve, the patient knowingly takes the final step themselves, clearly making this an act of assisted suicide rather than voluntary euthanasia, but because there is no oral ingestion the death is quick and predictable. Dr Preisig has previously told MDMD that using this method the time taken to die is “always the same, 30 seconds to fall asleep, and 4 minutes to die. No coughing, no vomiting, no pain at all”. This contrasts with the possibility of many hours with oral methods, as demonstrated in a recent BBC2 documentary which showed a case in California which took 7.5 hrs.

The tragedy of Omid’s death, which movingly ends the film, is not that Omid chose to end his life. Instead, the tragedy is that Omid’s legal challenge failed and that his eventual medically assisted suicide in Switzerland was so difficult for him to arrange, causing him prolonged suffering he wanted to avoid. It also put his grieving friends and family at risk of prosecution under the UK’s assisted suicide law.

Marie and Omid considered all their alternative options carefully. MDMD strongly advocates good palliative care but recognises that the option of assisted dying is essential for some people for whom even the best palliative alternatives are inadequate.

MDMD’s work will not be complete until this type of peaceful “good death” is integrated into improved palliative care in the UK. Currently the option is only available in the UK to a fortunate and determined few who manage to arrange it in Switzerland. Outsourcing medically assisted dying to another country should only be be seen as a temporary stopgap, pending a compassionate, safe law to permit medically assisted dying for people like Marie, Omid and Alex in the UK, after full and open discussion with their UK doctors. Many of the problems with the current UK arrangement are discussed here and in this study.



Endgame 65 min Oct 2018 from Andi Reiss & Yellow Media Group on Vimeo.

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Acclaimed Doctors Call Upon Parliament To Stop Ignoring Assisted Dying Reform

A new medical organisation in favour of assisted dying has been formed in the UK and will work to change the law on assisted dying to allow people in the UK who want the option of a safe and dignified assisted death.

Announced in a column in the British Medical Journal today, “MDMD Medical Group” (MD.MG)has been formed by a group of leading UK doctors. In the article, the best-selling author Dr Henry Marsh, women’s right advocate Professor Wendy Savage and acclaimed researcher Sir Iain Chalmers disputed claims that “pro-choice doctors” opposed changing the law on assisted dying, and called upon Parliament not to ignore the many people in the UK who want the option of a safe and dignified assisted death.

The new group, which is open to any pro-choice clinical professional, will be the first medical organisation in the UK advocating to allow mentally competent adults, who have incurable health problems and an intolerable quality of life, to have the option of a medically assisted death. The group will be Chaired by Dr Colin Brewer and joins the right to die organisation, My Death, My Decision.

In the letter, the three doctors write “as with earlier medical debates about contraception and abortion, [assisted dying evokes] strong feelings on all sides”, but, that, regardless of one’s view “the debate about legalising Medical Aid in Dying (MAID) in Britain is not going to stop”. They claim “whatever form legislation eventually takes, doctors will be the professionals most involved in enabling patients to have more control over the manner and timing of their death” and it is therefore essential for them to “revisit the fundamental issues of patient autonomy and choice”.

In a 2018 editorial, the British Medical Journal declared its support for changing the law on assisted dying and reported that over 55% of UK doctors agreed or strongly agreed that the law should change. A survey by Medix found that 45% of UK doctors believe that some healthcare professionals already assist with the death of patients.

The announcement comes after the Royal College of Physicians polled it’s members on whether it should change its policy on assisted dying reform, and news earlier this month that Jersey’s government will begin looking into whether the law on assisted dying should change.

Recently a new poll released by My Death, My Decision  found that 93% of the public now consider assisted dying acceptable for those who are terminally ill in at least some circumstances, and 88% consider assisted dying acceptable for those suffering with Alzheimer’s in at least some cases, provided this was before they lose mental capacity.

Drs Marsh, Savage and Chalmers go on to say that “in Britain, and in several American states that have legalised assisted dying, there is a debate about whether the right to die should be restricted to patients with terminal illnesses, or be extended to those suffering from medical conditions that are intractable, intolerable and have no prospect of relief from an early natural death.” The letter highlights several British citizens in that category who have attracted “wide public sympathy and support”, such as Omid T who suffered from multiple systems atrophy and ended his life last October by medically assisted suicide in Switzerland, and Tony Nicklinson who suffered from locked-in syndrome and ended his life by starvation in 2012.

Following the High Court’s ruling against Omid T on a preliminary issue, and the Supreme Court’s decision not to grant Noel Conway permission to bring a case in December of last year, the group aims to encourage parliament to explore the “full spectrum of pro-choice views” and change the law to help those who are either terminally ill or incurably suffering”.

The new Chair of My Death My Decision Medical Group, Dr Colin Brewer has said:

“For some time now, doctors and nurses have watched with increasing despair, as the interests of their patients were sidelined and attempts to reform assisted dying faltered. All too often we have watched as debates about the right-to-die were confused by misinformation and myth. We believe it is now necessary for the voices of strongly pro-choice doctors and nurses to be heard.  Our organisation hopes to provide a voice for those clinicians, and the balanced medical perspective that this debate has lacked.”

“The majority of doctors and nurses now believe that the law against assisted dying is unacceptable. Those who face incurable suffering as well as those who are terminally ill, deserve the option of a peaceful, pain-free and dignified death, but instead of strengthening the doctor-patient relationship, the law gags doctors and prevents them from engaging in open conversations.”

My Death, My Decision’s Director of Policy, Phil Cheatle, said:

“The fault lines in this debate have become clear.  We know that an overwhelming majority of the public believe that the law on assisted dying should change, and that the medical profession stands with that of the compassionate majority.  It is time for our decision-makers to heed their voices and legalise assisted dying, otherwise they will remain on the wrong-side of this debate.”

“My Death, My Decision welcomes MD.MG and is excited for such a distinguished group of clinicians to have joined our campaign for a more compassionate approach to dying in the UK. The current law prohibiting assisted dying is unacceptable. It is time for the UK to adopt a more compassionate law, which balances both the need for strong safeguards and a respect for human dignity.”

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‘Five to Midnight’ Before Dementia Takes Over

A BBC story discusses the assisted death of dementia sufferers, in particular the case of Annie Zwijnenberg in the Netherlands. Annie was never in any doubt that she wanted euthanasia, once she had her Alzheimer diagnosis. She delayed as long as she felt she could but she knew that if she waited for too long she would lose the mental capacity to confirm her decision at the time. This would make it much harder for her doctor to help her. In the Netherlands, with an appropriate Advance Decision, euthanasia for someone who has requested it but has subsequently lost mental capacity is legal – though it is controversial.

Dementia is the leading cause of death in England and Wales, with 1 in 8 deaths being caused by dementia, rising to 1 in 4 for women over 80. Many of us would wish to avoid the final stages of dementia where the quality of life is below the level we could accept – or at least, below the level our former-selves, before we lose mental capacity, could accept.

In the UK our options for avoiding end stage dementia are bleak, which is why MDMD campaigns for a change in the law on assisted dying. In Switzerland, those with early stage dementia can have an assisted suicide, but only if they have the mental capacity to make a life ending decision at the time. MDMD supporter Alex Pandolfo is choosing this route and has talked publicly about the difficulties of deciding when to make his final journey there.

Phil Cheatle, MDMD’s Director of Campaign Policy, recently asked Baroness Finlay, a professor of palliative medicine at Cardiff University and a strong opponent of a change in the assisted suicide law, how he could avoid late stage dementia. Her answer, sourcing drugs from the internet, was both astonishing and illegal. MDMD regard this as unsafe and uncaring. There has to be a more compassionate solution instead of people taking their own lives, often too soon, and often in a risky, unpleasant, traumatic way.

MDMD agrees with the Swiss approach that those seeking an assisted death need to have mental capacity at the time of their assisted death. This is a strong safeguard. It also makes a difficult situation easier for those who would otherwise have to decide when to give euthanasia to another person – a responsibility that few would wish to accept.

The BBC story highlights another issue of assisted suicide – an oral method can take a long time. In Annie’s case her doctors eventually decided to give her a lethal injection, which is legal in the Netherlands. A similar issue was illustrated in a recent documentary by Louis Theroux, but in this case, in California, a lethal injection would have been illegal. A better alternative method for assisted suicide seems to be that used at Lifecircle in Switzerland by Dr. Erika Preisig. Whenever possible she uses an intravenous method where the patient controls a valve to start the flow of the medication which will end their life. (It is required by Swiss law that the patient self-administers the lethal medication.) Dr Preisig told MDMD that using this method the time taken to die is “always the same, 30 seconds to fall asleep, and 4 minutes to die. No coughing, no vomiting, no pain at all”.

MDMD campaigns for a safe, peaceful method like this to be available in the UK for those who (amongst others) are dying of dementia and who choose an assisted death as their form of a good death. Currently this choice is denied to people. People like Joan Cheatle, who feel that due to incurable medical conditions, (and typically in old age), their life is complete and they just want to go to sleep peacefully and not wake up. Instead, despite the best care available, they have to suffer for months or years longer than they wish, until they are dependent on life sustaining medication which they can refuse. In comparison, Annie Zwijnenberg in the Netherlands was lucky. She had her wish of ending her life ‘five before midnight’. Something that Joan Cheatle, in the UK, asked for, but was denied.

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“Euthanasia in the Netherlands”. Look again, when someone says death will be available on demand.

My Death, My Decision’s Campaigns and Communication Manager, Keiron McCabe, responds to the latest Guardian long-read “Death on demand: has euthanasia gone too far?”

Christopher Bellaigue raises an important question for those of us who advocate for assisted dying reform. In a society which permits euthanasia, what are the acceptable limits to autonomy? As the Netherlands has demonstrated, this question yields no easy answers, and its answer will differ depending upon one’s moral, social and religious background. Yet whilst Bellaigue is right to have raised such an important question, he is wrong to have drawn such a quick conclusion.

Bellaigue presents a bleak picture of the Netherlands. Drawing upon a declining rate of euthanasia, he connects the “long-term consequences” of Euthanasia, and a lack of resolve and “willingness” from doctors, to suggest the country now “doubts” its decision to legalise assistance to die. Paradoxically, he also writes about a rising rate of Euthanasia, and that “in 2017, some 1,900 Dutch people killed themselves”. The implication being that euthanasia “cheapen[s] life itself”, and encourages higher levels of suicide. Leaving aside these paradoxes, these connections are misleading.  Since 2004, there has been a 249% increase in the number of notifying physicians, involved in Euthanasia and the Dutch suicide rate remains at about the same level as it was before the law changed.

Bellaigue also suggests that in 2002 the Netherlands should have “stipulate[d] that patients must be competent at the time” they make a decision to end their life. The importance of this requirement is abundantly clear in the context of Dementia, as Bellaigue raises, because it is only in the early-stages of Dementia that someone can retain the capacity to make an autonomous decision. Yet, it is misleading to suggest that competence is unnecessary, at the time of death, in the Netherlands. Whilst the requirement of “competence” may not be clear upon first inspection, since the 2002 law does not explicitly use the term, the 2018 Dutch Euthanasia code is clear that mental competence is encapsulated within the legal requirement for a patient to make a “voluntary and well-considered request”.

At no point is Bellaigue’s warning clearer, than his concern that euthanasia is leading to “death on demand”, a conception which incidentally had been discussed since 2010 but never realised. Few advocates of a right to die, condone an entirely unencumbered entitlement. Most would argue, as I would, that alongside any right to a die, there must be a stringent and robust set of safeguards to protect those who are most vulnerable. Determining the limits of that right is a difficult task. For some, assistance may turn upon the presence of a terminal illness; whilst for others, the permission of a loved one may be essential.

I believe that the answer lies in empowering mentally competent adults, who suffer from incurable health problems, with the freedom to determine the course of their own lives. It is our ability to act autonomously which gives life meaning. Both in the sense of taking responsibility for our actions, and in owning our individual destinies. When an incurable illness robs someone of that ability, and their quality of life falls permanently below a level that they find can acceptable, it is wrong to force them to live against their will.

Euthanasia is a complex and difficult question, which demands a sensitive and careful discussion. It is incumbent upon us all to make sure we hold ourselves to that standard.

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