Switzerland

DIGNITAS: “It’s about time” the UK changes law on assisted dying

The Swiss assisted dying organisation DIGNITAS has told parliamentarians that the UK should legalise assisted dying. Silvan Luley, a member of the organisation today gave evidence to the Health and Social Care Committee’s inquiry into assisted dying, along with other experts from Switzerland. 

Luley told the inquiry: “If you legalise assisted dying, it will improve conversations with patients, make it transparent, public, clear and make it possible to do research. Doctors will feel safe, people will feel safe.”

When questioned if assisted dying is at odds with palliative care, Luley replied that most Brits that visit DIGNITAS are grateful for the UK’s excellent provision of palliative care, but they say “I want to have my choice”. He added: “That’s the crucial point. It’s about choice.”

Switzerland has allowed assisted dying since 1942, as long as the motives are not selfish. It is one of the few countries in the world that does not have a residence clause, meaning citizens of other countries are allowed to have an assisted death. The number of British people who are members of DIGNITAS has soared by more than 80% in the past decade.

Dr Georg Bosshard, a practising geriatrician in Switzerland, said that Swiss people would find the UK’s blanket ban on assisted dying ‘unthinkable’. He added: “We should have varieties of possibilities for having a good death – we should have a society that meets the needs of different people and the wishes of a wide variety of people.”

Samia Hurst-Majno, Professor of Biomedical Ethics, warned the committee of both under-regulation but also overregulation of assisted dying. She added that “It’s an illusion that banning assisted dying protects vulnerable people.”

My Death, My Decision would welcome an assisted dying law in the UK that grants mentally capable adults the option of an assisted death if they are enduring unbearable suffering from an incurable physical condition.

Claire Macdonald, Director of My Death, My Decision, said:

“We must stop exiling Brits who are dying and suffering from incurable diseases to Switzerland. We must stop exporting compassion and let people have a choice at the end of their lives. 

The evidence the committee heard today was overwhelming. In Switzerland, assisted dying has been working for over 80 years, the system is safe, workable and gives people back their human rights.”

Notes:

Members of the MDMD team, as well as individuals affected by the current law on assisted dying, are available for interview upon request

For further comment or information, media should contact Nathan Stilwell at nathan.stilwell@mydeath-mydecision.org.uk or phone 07456200033.

My Death, My Decision is a grassroots campaign group that wants the law in England and Wales to allow those who are terminally ill or intolerably suffering the option of a legal, safe, and compassionate assisted death. With the support of over 3,000 members, we advocate for an evidence-based law that would balance individual choice alongside robust safeguards and finally give the people of England and Wales choice at the end of their lives.

Read more about our work with the Assisted Dying Inquiry: https://www.mydeath-mydecision.org.uk/2023/05/15/assisted-dying-inquiry-health-and-social-care-committee-takes-next-steps/ 

Watch the evidence session here: https://committees.parliament.uk/event/18436/formal-meeting-oral-evidence-session/ 

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Assisted Dying laws forced our mum to die without the right-to-say-goodbye, says grieving family

The family of an unnamed woman who travelled to Switzerland to die in secrecy have criticised the current ban on assisted dying for denying their family and close friends a right-to-say-goodbye. 

The family, who have asked not to be named, felt compelled to travel more than 1,000 miles by car and ferry to avoid police scrutiny and spent more than £10,000 after their relative, who had been diagnosed with motor neurone disease and who could no longer eat or speak, begged them to help her die with dignity. 

The family said they had felt anxious, that the woman’s GP, who had provided medical records, might realise what was happening and prevent their relative from traveling abroad. As a result, the family took extra precautions to maintain their secrecy, meaning the woman was unable to say goodbye to cherished friends and other family members – denying her and them closure, which would have been possible in other circumstances. 

Describing the sense of ‘constant anxiety’ and ‘fear’ that the family would be stopped at any moment, the woman’s daughter has spoken out in favour of changing the law on assisted dying, adding that the secrecy was a burden that only added to her grief. 

She said: 

‘I want to tell my manager at work, I want him to understand what we have been though, but I dare not. I am not ashamed of what we have done. It was the right thing for my mum’. 

Phil Cheatle the  Lead Campaign Commentator for My Death, My Decision said:

‘This case illustrates the tragedy of our current law.’

‘Those who merely want the right to die on their own terms are forced by our law to conceal their plans, out of fear of being discovered or prevented from exercising choice and control over how they die. The need for secrecy deprives both family and friends of saying goodbye in the manner they would wish. But the current UK alternatives of refusing treatment, refusing food and liquid, or taking one’s life unaided while you are still able, all seem far worse.’

‘The law clearly needs to change. More and more people are deciding that the compassionate assisted dying options, which are available in an increasing number of jurisdictions, such as Canada, are far preferable to ending one’s days in enforced suffering in the UK. We urge the Government to authorise an investigation into the current law, and ensure no-one else is forced to go through the anxiety of a secretive death’.

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MDMD marks the death of assisted dying supporter

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Early in December, My Death, My Decision supporter Richard chose to end his life in Switzerland. 

Richard had been suffering from motor neurone disease, an incurable condition which can result in someone’s muscles wasting away and significant mobility problems. Diagnosed with the condition in 2018, Richard’s illness became progressively worse and eventually resulted in the need for a wheel rollator to move. Knowing that he would eventually become wholly dependent upon a ventilator to breathe, Richard decided to end his life before he deteriorated further. 

In a message written before his death Richard said: 

‘Probably the most common argument raised by opponents of an assisted dying law is that the vulnerable might be coerced into ending their lives… the process of applying to Switzerland is arduous and involves several discussions with doctors and others, during which the professionals would readily identify anyone acting against their will. [This may be] being used as a smokescreen to conceal opponents’ true motives, which may be more controversial and rather harder to justify’. 

‘My wife and I decided to approach Dignitas as soon as we realised what is involved in the natural final stages of MN (motor neurone disease)… We regard ourselves as very fortunate to be able to afford Switzerland. We are aware that so many who would like to go simply don’t have the means.’

Trevor Moore, Chair of the campaign group My Death, My Decision said:

‘It is shameful that Richard was denied the most basic of human rights to choose how, when, and whether he died in this country. His story serves as a stark reminder of both the impact and importance that a change in the law could bring to those who are incurably suffering or terminally ill. 

Fundamentally, dying in a manner and timing of your own choice should not depend upon someone’s financial means. More than one person a week now travels abroad to end their life, but many others cannot afford to make such a journey. In a civilised country, such as our own, we surely should not fail to respect the rights of our citizens or simply export their suffering to other places. 

We are grateful Richard was able to find a peaceful, painless, and dignified death abroad – but will continue his fight for a compassionate choice and change in the law in this country. Our thoughts are with his loved ones during this sensitive time and to everyone else touched by his life’. 

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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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Omid Ends his life at Lifecircle in Switzerland

Omid T: A Legacy of Bravery, Compassion and Empowerment

Photo: Omid and Dr Erika Preisig at Lifecircle, shortly before his medically assisted death. Photo Credit – Andi Reiss

I’m glad you’re here; thank you, thank you for everyone’s support – Omid (1964 – 2018)

On October 4th 2018, assisted dying campaigner, Omid T chose to end his life by a medically assisted suicide at Lifecircle near Basle, Switzerland. Although Omid was still awaiting the outcome of his landmark legal case, Omid’s suffering prevented him from waiting any longer. His death was reported in the Sun and the Daily Mail, among others. Omid’s lawyer has updated his CrowdJustice webpage accordingly. His lawyer Saimo Chahal said “I saw him shortly before he went to Switzerland and he told me that he could not bear living any longer and wanted nothing to get in the way of him having a peaceful and dignified death.” MDMD’s exclusive interview with documentary film maker Andi Reiss who was present when Omid ended his life is available here.

Unlike Noel Conway, who has launched a separate legal case to permit assisted dying for those terminally ill, Omid’s case sought to secure the right to a dignified death for all mentally competent adults, facing years of unbearable and incurable suffering.

Omid would not have benefited from Noel Conway’s appeal or the assisted dying bill put forward by Rob Marris in 2015. Living with Multiple Systems Atrophy (MSA) since 2014, Omid did not have six or fewer months left to live.

Over 18 months MSA increasingly robbed Omid of the dignity he deserved. First he lost his independence and then his motor functions. Omid’s life became increasingly intolerable for him and eventually he became virtually unable to move and had very limited ability to communicate. Yet Omid retained his mental capacity and was still able to persistently communicate his desire for a medically assisted death, something denied by UK law. Unfortunately palliative care was inadequate for Omid and his life became unbearable, despite being in a high quality care home. On a previous occasion he attempted and failed to end his life unaided. He needed medical assistance. The circumstances which Omid was forced to search for his peaceful end in Switzerland, is a tragedy. Although he was eventually able to obtain a medically assisted death abroad, it took a lot of time to arrange, and put his family through a lot of additional trauma – hardly the good death he wished for.

Debilitating medical conditions like Omid’s do not have to mean that someone cannot live a life they feel is worthwhile. It is up to the person themselves to form their own view. With the right support some can and do live fulfilling lives, despite the medical situations they have to endure. However this is not always possible. Omid is one clear example. It is not the medical condition alone which makes a life intolerable, it is in part also the way the individual is able to react to it. Some people, quite understandably, decide that for them their life is complete or cut short, and they wish to have a peaceful death rather than continue to suffer. Nobody, especially not those considered to be vulnerable, should be pressured or coerced into requesting an assisted death, but equally, nobody should be pressured or coerced into having to suffer against their will, nor be forced to continue to suffer by law, when that suffering is unacceptable to them, incurable, and they simply wish for a peaceful medically assisted death.

Without a change in the law to legalise assisted dying for people like Omid, the doctor patient relationship is badly broken at a time when it is most needed. Suffers like Omid deserve better. They need independent professionals to discuss their wish for an assisted death with; to ensure they have carefully considered every alternative; and, if no acceptable alternative is available, to provide medical help to die.

Omid’s legal case follows on from Debbie Purdy, Tony Nicklinson and others. In his summing up of the Nicklinson case, Lord Neuberger, then President of the Supreme Court said “There seems to me to be significantly more justification in assisting people to die if they have the prospect of living for many years a life that they regarded as valueless, miserable and often painful, than if they have only a few months left to live”.  This exactly sums up Omid’s situation. The UK medical, legal and political systems all failed him. We hope his efforts to change the UK system will eventually bear fruit.

MDMD offers sympathy to Omid’s family for their loss; gratitude to Omid for his efforts to challenge the law; and thanks, on Omid’s behalf, to his family and friends who showed the compassion necessary to help him end his life as peacefully as possible under very difficult circumstances.

The outcome of Omid’s case is expected soon. How the case will progress now depends on this ruling and on whether another person in a similar position is willing to carry the case forward. Omid’s lawyer would like to hear from anyone who might want to continue the case.

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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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Dr David Goodall (104) travels from Australia for a Good Death in Switzerland

There has been much reporting of the death of 104 year old Dr David Goodall, who ended his life at Lifecircle in Switzerland on 10th May 2018. The BBC include a video extract from his last press conference in an article on their website.

Dr Goodall was a British ecologist and botanist who was not terminally ill, but had a deteriorating quality of life due to poor health. He lived and worked in Australia but had to fly to Switzerland in order to have the medically assisted death he wished for. The Daily Mail article describes how Dr Goodall, an honorary research associate at Perth’s Edith Cowan University, made international headlines in 2016 when he was declared unfit to be on campus over concerns about his safety, including his ability to commute. Scientists around the world supported him to get the decision reversed. In another article the BBC quoted a friend, Carole O’Neill, who explained how these events had affected Dr Goodall. He was forced to work in a location closer to home, apart from his colleagues and friends. At a similar time his deteriorating health also meant he had to give up driving and performing in theatre. He was, of course, most fortunate still to be able to enjoy doing these things up until the age of 102! Mrs O’Neill went on to explain that the events of 2016 marked the beginning of him not being happy anymore. “He’s an independent man. He doesn’t want people around him all the time, a stranger acting as a carer. He doesn’t want that. He wants to have intelligent conversation and still be able to do the same things like catching the bus into town.”

The Guardian reports that he had attempted suicide about two months ago after suffering a fall. This shows the difficulties even the best educated people can face when trying to end their lives without medical assistance. Those who argue that the assisted dying law doesn’t need to be changed, as suicide is no longer a crime and people can end their lives if they wish, totally miss the point about how difficult it is for people to achieve this peacefully and unaided, at the time when they rationally decide that it is the best option. Dr Goodall’s doctors in Australia are reported as saying “he’s talking about ending his life, there’s nothing much wrong with him, so therefore he’s a risk to himself.” This apparently led them to consider keeping him in hospital against his will, and attempting to prevent him from travelling abroad. Not exactly the kind of patient-centred care he would have hoped for. Wouldn’t it have been better for his doctors to be able to accept and assist in what appears to be a very rational and well thought out end-of-life decision?

Cases such as this present a real dilemma for those who believe that medically assisted dying should be restricted to those who are deemed “terminally ill” in the sense of having a life expectancy of six months or less. What do they propose should be done for someone like Dr Goodall? Deny him the good death he quite rationally seeks? Why?

Dr Goodall was very clear about what a good death meant to him. The Daily Mail article reports him saying:

“I am 104 years old so I haven’t got much time left anyway. I might as well not have [my health] getting worse and worse, making me unhappy as it goes.”

From the information available it seems that Dr Goodall’s decision is a classic case of someone who has decided that their life is complete, and who finds their incurably deteriorating health has made their quality of life unacceptable. He rationally decided that a medically assisted death was his best option. MDMD support his decision and thank him, and his family and friends, for publicising his situation so widely. They have done much to stimulate the debate on future end-of-life care and how we should support people in their choices.

From MDMD’s standpoint, it seems totally unacceptable that someone should need to embark on such a long journey in order to have what for them is a good death. Not only that, if he, and others who share his end of life wishes, knew that their good death option was available in their home country, without the need for an arduous journey, they might delay their life ending decision for a little longer; until they decide to go to their nearest Good Death Centre perhaps?

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Dignitas hit out at UK politicians

Dignitas issued a hard-hitting press release this week “Ignorance, irresponsibility and hypocrisy – How a majority of UK politicians violate human rights and create suffering and costs“. Here’s an extract:

Just over a week ago, once again an individual from the UK has travelled to DIGNITAS – To live with dignity – To die with dignity, for having access to the human freedom and right to decide on time and manner of his own end of suffering and life, as it has been basically acknowledged by the European Court of Human Rights in 2011. This freedom and right has been violated by the UK once again – for the 394th (!) time now.

A majority of UK politicians ignore that these journeys cause a lot of suffering for the individual and his family and friends. Not only is it very hard for someone already in a deplorable health situation to travel abroad. It all has to take place in secret and with fear, as it is shadowed by an absurd law that threatens to criminalise loved ones who give their compassion and care – something which every suffering individual deserves.

The press release was picked up by the Daily Mirror in an article titled ‘Dignitas blasts “ignorant and irresponsible” MPs for refusing to back change to assisted death laws in UK‘. The Mirror article refers to the case of James Howley who accompanied his partner to Dignitas. On return he was investigated by the police for six  months before charges were dropped. MDMD are aware of other similar cases.

MDMD fully agree with Dignitas that the UK law on assisted suicide is not working and needs to be changed to allow medically assisted dying in the UK, with similar safeguards to those which apply at Dignitas. In Switzerland medically assisted suicide is possible for a person who requests it provided that they are mentally competent and have a medical condition which is incurable and which causes unacceptable suffering. It is not restricted to those who are “terminally ill” in the sense of having a life expectancy of six months or less, which means that it is available to those with the early stages of dementia provided that they still retain mental capacity. MDMD feel this is particularly important now that dementia is recognised as the leading cause of death in England and Wales, and many more people die with it rather than of it.

I’m not frightened of dying, but I am frightened about the way I die

The current law causes far too much suffering, both for the dying person and their family. Many people would agree with Helen Johnson, (James Howley’s partner who ended her life in Switzerland), when she said ‘I’m not frightened of dying, but I am frightened about the way I die’. The option of a medically assisted death in the UK, for those that want it, would greatly reduce that understandable fear, which even the best palliative care cannot allay. This would enable far more people to have a “good death” whether or not they actually choose medical assistance to die as their end-of-life situation unfolds.

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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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New Report on Outsourcing Assisted Dying to Switzerland

An excellent report ‘The True Cost – How the UK Outsources Death to Dignitas‘ was recently published by Dignity in Dying, discussing the many difficulties associated with UK citizens choosing to end their lives in Switzerland. (Despite it’s title, the report also considers other Swiss organisations prepared to offer medical assistance to die to foreign nationals, such as Lifecircle.) The underlying research was carried out by Bronwyn Parry, Professor of Global Health and Social Medicine at King’s College London and her Research Associate Sally Eales.

One day we will look back in disbelief at how long it took Parliament to realise this.

In the report’s foreword, MP Kit Malthouse, (who chairs the Choice at the End of Life All-Party Parliamentary Group), says “Our outdated laws discriminate between rich and poor, discourage proper conversations between patients and their doctors, criminalise grieving relatives who spend time with their loved ones in their dying moments and oblige people to end their lives before they are ready. Worst of all, while they are predicated on preserving the sanctity of life, they show no mercy to those facing an agonising death, and deny free will to those whose lives and deaths depend upon it. One day we will look back in disbelief at how long it took Parliament to realise this.” The report gives substance to these points through analysis of the current situation and using quotes from many interviews with those who have been involved in the process.

The report goes into admirable depth in many related issues, including:

  • The confusion and inconsistency over the medical approach to requests for discussion about assisted death or requests for required documents. This is something also covered in a recent article by Dr Paul Teed who is currently carrying out research in this area at Bristol University. (If you have personal experience and would be willing to take part in this research you can contact Paul anonymously through his website.)
  • The complexity of the process of arranging an assisted death in Switzerland. The process can take many months. MDMD understand from Dignitas that the process can take 3 or 4 months. Some people leave it too late to get started… to the point that by the time they have the “green light” to go, they are too ill to travel. In a response to a follow up question from MDMD, Dr Erika Preisig of Lifecircle told us that 8% of applications are not progressed because the applicant is no longer able to travel.
  • People are ending their lives too soon, due to the need to be able to travel to Switzerland. Dr Preisig told MDMD that she estimated that 40% of the people who end their lives at Lifecircle choose to do so sooner than they might, if they had the option of a medically assisted death at home, due to fear of no longer being able to travel.
  • Why even the best available palliative care is not always sufficient.
  • The alternatives some people feel forced to consider: refusing treatment and suicide.
  • The cost – typically around £10,000. This figure should, however, be viewed in the context of some other costs:
    a) It includes cremation costs which could cost around £3,000 in the UK
    b) Anyone having to pay for their own residential nursing care will typically be paying around £1,000 per week.
    c) Dignitas are sometimes able to reduce or waive their fees for those who do not have sufficient financial means.

This important and hard-hitting report makes an overwhelming case for changing the UK law. Until that happens there are no good alternatives for some people. The clear conclusions for anyone contemplating “going to Switzerland” are to: apply early; expect bureaucratic difficulties; and, regretfully, plan to go before you would ideally choose, while you are still able to travel. MDMD recommend reading the report in full and thank those who contributed to its production.

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