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

Read more

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.

Read more
The Economist logo

Economist Essay Series on Assisted Dying

The Economist is publishing a series of essays by those involved in the Assisted Dying debate. We are delighted that one of the invited authors is Dr. Michael Irwin, MDMD’s founder and now a patron. Michael’s piece describes the five occasions where he has been present at an assisted suicide in Switzerland.

All the essays are well worth reading. The series keeps a balance between those in favour of a change in the law, and those opposed.

Steven Fletcher gives the perspective from someone who is severely disabled. Steven, a quadriplegic since he was 21, disabled from the neck down after a motor accident, was a member of the Canadian parliament, including five years as a cabinet minister. As a backbench MP he “introduced the private members’ bills into parliament that ultimately resulted in the changes in the law that ended the prohibition on medical assistance in dying in Canada.” He ends by saying “Dying with dignity is the greatest shift in morality in Canada in this generation. As long as the shift is in the context of empathy, compassion, choice, hope and common sense other countries should learn from our example.”

Another particularly informative essay, also from Canada, is from Ellen Wiebe, a doctor who says she has “provided about 150 assisted deaths”. Talking about this role from the doctor’s perspective she says “an important part of being a good doctor is helping our patients have a good death, but the only person who can define a good death is the person dying.” (For a discussion of what is meant by a “good death” see our article here.)

This article is in stark contrast to the essay from Ilora Finlay, a crossbench peer in the House of Lords, professor of palliative care, and leading critic of attempts to legalise assisted dying in the UK. Baroness Finlay argues that a change in the law is not necessary and that we have a lot of choice already, in particular a choice to refuse life prolonging treatment, relying on doctors to provide “analgesia and other measures to relieve distress”. Unfortunately that can fall far short of a “good death”, as defined by the dying person. This is especially so when accompanied by the fear of what may happen, coupled with the inability to do anything about it. The option of a medically assisted death, as part of the palliative care process, would alleviate that fear and help prevent early suicides both in the UK and in Switzerland.

Baroness Finlay also says that, due to improved palliative care, “for most people in Britain today, dying does not mean an agonising death, but a gentle ebbing away of life.” MDMD agrees that palliative care helps ensure a good death for many, and we fully support better palliative care provision. However, our fear is for those who fall outside “most people”, and also for those whose idea of a good death is not “a gentle ebbing away of life” – especially if this is protracted, unpleasant, and undignified as can so often be the case, particularly for those facing advancing dementia and other degenerative conditions.

Read more
bbc news logo

Supreme court decision on withholding food and drink in PVS cases

The BBC report on the ruling by the Supreme Court that legal permission will no longer be required to end care for patients in a long-term permanent vegetative state. The decision applies to patients who are being kept alive by artificial means such as tube feeding and hydration. It means that when family and doctors agree, a court decision is not required in order to stop these artificial means of keeping a patient alive.

We welcome this clarification, which upholds an earlier ruling in a lower court. As with our comments at that time, MDMD warns that this should not be interpreted as making Advance Decisions any less important. The ruling does not cover the case when family and doctors disagree, also, an Advance Decision can provide a legally binding refusal of treatment in cases where doctors and family agree to continue treatment, if that is not what the patient has stated they want. Even in cases where everyone is in agreement, an Advance Decision makes these incredibly difficult decisions much easier and safer for all concerned. With an Advance Decision, doctors and relatives have documented evidence of what the patient wants for themselves, so they do not have to try to decide what is in the patient’s best interests, based on little, or incomplete, information of the patient’s wishes.

If you haven’t completed your own Advance Decision, MDMD strongly suggests that you do so as soon as possible, regardless of age or health. See our information and references to other organisations on this here. We also recommend having periodic discussions with your next of kin about your end of life wishes. Some suggestions for how to do this are given here.

Read more

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

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

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

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

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

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

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

Read more

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.

Read more
bbc news logo

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?

Read more

Scottish Parliament’s Cross-Party Group on End of Life Choices meeting

MDMD Associate Coordinator Colin Brewer represented MDMD at the Scottish Parliament’s Cross-Party Group on End of Life Choices. Here is his report…

We heard a good presentation by Dignity in Dying’s Scottish organiser on their excellent recent survey of people from Britain who approached Dignitas for assistance and the financial, legal and bureaucratic obstacles that some of them encountered in the process. (I presented my own, more modest, research in the same field at Euthanasia2016 – the international conference organised by the World Federation of Right to Die Societies in Amsterdam two years ago.) When I mentioned the importance of including early dementia among other slowly progressive conditions that should at least be discussed in any legislative proposals, the reaction was interesting. Several people applauded or nodded vigorous approval and some later spoke in favour of the idea. Others, while apparently not unsympathetic, were worried that even mentioning dementia would make legislation even more difficult to pass. I noted that in Oregon and Canada, dementia is now up for discussion as an approved addition to the present categories. MDMD looks forward to contributing to Westminster’s equivalent group in the near future.

MDMD believe discussion of dementia is particularly important now that it is the largest cause of death in England and Wales, and many more people die with it, rather than of it.

Read more

Should we be able to choose our own death?

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

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

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

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

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

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

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

Read more

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.

Read more
Privacy Policy | Conditions of Use | Press Office
campaign in parliament
champion legal cases
broaden the debate

My Death, My Decision is a company limited by guarantee, registered in England company number 11758121 and located at Unit A 39 Moreland Street, London, EC1V 8BB.