Personal Stories

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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Marking one year since assisted dying campaigner Omid T’s death

Today marks one year since the right-to-die campaigner Omid T ended his life in Switzerland. To honour the anniversary, My Death, My Decision has released the exclusive extract from the last interview of Omid T, courtesy of ‘Endgame’ director Andi Reiss and Yellow Media Entertainment.

Omid had been a vocal and active campaigner, and a prominent member of My Death, My Decision before his death. Following a diagnosis of the rare neurological condition Multiple Systems Atrophy in 2014, the father of three launched the UK’s first assisted dying case, since Paul Lamb and Tony Nicklinson’s Widow Jane challenged the law in 2014. 

Raising more than £34,000 to support his challenge, Omid sought to convince the courts that the UK’s prohibitive law breached the human rights of those living with unbearable and incurable illnesses, by denying them a right to a private and family life. However, fearing that his condition would progress and leave him physically incapable of travelling to Switzerland, Omid was forced by the UK’s law to go to Switzerland before he would otherwise have wished, and 2 days before the High Court delivered its judgment – ultimately leaving Omid’s case unresolved. 

Omid recognised the importance of an inclusive law on assisted dying, believing that just as compassion has motivated people to support assisted dying for those who are terminally ill, compassion for others should also underscore support for a change in the law for adults of sound mind, facing constant and unbearable suffering. 

“In my view, there is no moral or legal justification for drawing the line at terminal illness or 6 months or fewer to live.  This would not have helped Debbie Purdy, Tony Nicklinson or me or many others who are begging for help to end our lives at a time of our choosing without pain in a dignified way.”

Acknowledging the one year anniversary of Omid’s death, My Death, My Decision’s Chair, Trevor Moore commented: 

‘Omid’s story cut through the debate on assisted dying, to provide a strong and poignant reminder that, unless the law respects the rights of both those facing terminal and incurable illnesses, a balanced and compassionate change in the law, will discriminate against hundreds that deserve compassion. It was and remains a tragedy that Omid was forced to die abroad.

Nearly 90% of the public now agrees that Omid should have had the right to choose how he died, prominent medical opinion (such as the Royal College of Physicians) has shifted, and an increasing global consensus now points towards changing the law both for those who are terminally ill and those facing incurable suffering. Isn’t it time that our politicians take stock, and act to reflect this reality?

Omid has now passed the baton onto Paul Lamb and Phil Newby to change the law in the UK, and we will continue to support them both.’ 

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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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‘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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Video Evidence helps in Rational Suicide Inquest

The BBC reported the inquest into the death of Beryl Taylor(70) who died in Rattlesden, Suffolk, in July 2016. The case is also reported in more detail in the East Anglian Daily Times.

Mrs Taylor’s husband had been arrested on suspicion of assisted suicide, and later murder. He was subsequently released. The coroner made a legal conclusion of suicide and that she had made the decision of her own free will.

The court heard that after police investigation and consideration by the Crown Prosecution Service, it was decided it would not be in the public interest to proceed further. This appears to be in line with the Director of Public Prosecutions guidelines on assisted suicide. It is not clear why the possible murder charge was considered and later dropped. The DPP guidelines apply to assisted suicide but not to the even more serious offence of murder.

The case is interesting as the couple clearly researched and discussed the situation carefully before Mrs Taylor took her life and even agreed to take the unusual step of making a video recording of a statement by Mrs Taylor, and her suicide.  Mr Taylor cooperated fully with the police, having anticipated their investigation. This behaviour, accompanied by the video evidence, no doubt helped the police immensely in their investigation, and perhaps helped ensure that charges were not pressed.

Detective Sergeant Michael Gwyn told the court that when police officers arrived at the Taylor’s house they were given a ‘do not resuscitate’ notice by Mr Taylor.

“He described the incident had been recorded on camera and provided police with the camera,” DS Gwyn went on to say 
“Because of the evidence that was seen on the camera, Mr Taylor made it clear he knew his wife intended to take her life and had to some extent facilitated that.”

It is interesting that DS Gwyn told the court that “… on reviewing the camera evidence he was arrested on suspicion of murder”, yet this charge was later dropped.

The inquest heard Mrs Taylor had read a statement to the camera before taking her own life. Assistant coroner, Kevin McCarthy said: “It makes clear to me that she has reached the decision to end her life and because of her disabilities, which were quite profound, … This is a woman who has reached the state in her existence where her quality of life is non-existent and she had decided life was not worth living.”

The court was told Mrs Taylor suffered from a range of medical conditions including fibromyalgia, allergies, chronic fatigue syndrome and multiple chemical sensitivities. None of these are terminal illnesses so we can be confident that her life expectancy was longer than 6 months. This means that she would not have been helped by the type of law proposed by Rob Marris in 2015, and argued for in the Noel Conway case. (Should such a law eventually be passed in the UK, it would however be a very welcome first step.)

The case seems to show that it was a combination of incurable medical conditions which reduced Mrs Taylor’s quality of life below the level she could accept. The NHS website says “although there’s currently no cure for fibromyalgia, there are treatments to help relieve some of the symptoms and make the condition easier to live with.” However, when coupled with other conditions, Mrs Taylor found her condition impossible to live with.

My Death, My Decision coordinator Phil Cheatle said:

“This is a tragedy which shows how some deaths are extremely bad, not only for the dying person, but for those they leave behind. Losing a wife is bad enough in itself, but going through a police investigation and risking a lengthy jail sentence is intolerably cruel for a grieving partner.”

Mrs Taylor clearly felt as though she had no other option than to end her life. She did so in the knowledge that her decision could result in her loving husband serving a prison sentence. Her decision raises a number of unanswered questions: Would Mrs Taylor have delayed her death if a medically assisted option existed? Would an open-minded counselling session have dissuaded Mrs Taylor from ending her life? Would better care, (despite her husband’s best efforts), have made her condition tolerable.

In Mrs Taylor’s case these questions will remain unanswered. The primary witness is now dead. The opportunity has been lost. Doctors currently fear any conversation about assisted dying may open criminal liability, thus counselling is not currently a realistic option. Nor, as a recent report found, are doctors given sufficient training to confidently engage in difficult conversations about death.

Our current system is demonstrably unsafe and lacks sufficient compassion. This case echoes concerns expressed about other cases where people have ended their lives themselves or with the help of others, cases like pharmacist Bipin Desai, Ian Gordon and Sir Nicholas Wall for example. The law needs to change to prevent more tragedies like these.

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Exclusive Interview with Andi Reiss, Film Director, and personal friend of Omid

MDMD’s Campaigns and Communications Manager, Keiron McCabe, spoke exclusively with “Endgame” director Andi Reiss about Omid’s journey. Andi was present at Omid’s medically assisted suicide in Switzerland.

Photo: Omid and Andi, shortly before Omid’s death at Lifecircle Switzerland. Photo credit: Andi Reiss

How did you first become interested in the issues around Assisted Dying?

My mother died in 2010 whilst in the UK. Although she had been on a clinical trial and lived for over 19 additional good years, I eventually witnessed the indignity of her death first hand. That’s when I first started to think and examine the process of Assisted Dying in this country. It’s also why I wanted to direct a documentary examining these issues in more depth than anyone had done before.

And how did you find out about Omid’s case?

About two years ago I approached My Death, My Decision’s coordinator Phil Cheatle about the Endgame film and the issues surrounding Assisted Dying. Phil and everyone at MDMD were great and that’s how I first found out about Omid. I got to know Omid over the filming of Endgame. But it was more than that, I spent a lot of time with Omid and Omid wasn’t just someone I was following for a documentary, Omid was my friend.

I realise you were with Omid and spent some time with him when he went to Lifecircle for medically assisted Suicide. What was Omid’s mood and atmosphere when he decided to end his life?

It’s hard to emphasise enough, just how much anguish and pain Omid was in before he visited Lifecircle. I’ve known Omid for over two years now and words simply can’t describe it. It’s quite an extraordinary thing. No one can fully comprehend that the day you are going to die could be one of the best days of your life.

The mood at Lifecircle was joyous! I’d never seen Omid so excited, happy and calm. He looked incredibly relaxed and was very peaceful. It was extraordinary. It might be hard to understand, but when someone becomes incurably sick and life becomes totally hopeless, making that choice is empowering. Omid’s life had become at the behest of everyone. He couldn’t do anything for himself anymore. So knowing that you can lean over and switch the valve and go to sleep within one minute is pure empowerment.

Endgame is scheduled for a screening on Tuesday 9th October 2018 in Jersey. Further information can be found at: www.endgamemovie.uk

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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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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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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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