PRESS RELEASE: Right to Die Campaigner Noel Conway Loses challenge in UK’s Highest Court

Today, assisted dying campaigner Noel Conway has lost permission to bring a case before the Supreme Court.

Diagnosed with Motor Neurone Disease (MND) four years ago, the retired teacher from Shrewsbury, is dependent upon a ventilator for up to 23 hours a day and has limited movement in his right hand, neck and head. Mr Conway now says that he wants the choice to decide when and how to die. However, he would be unable to do so without assistance.

Under current UK law, it is a criminal offence to assist the death of another and anyone found guilty faces a jail sentence of up to 14 years. However, at a permission hearing last week, Mr Conway’s lawyers argued that Section 2(1) of the 1961 Suicide Act was in breach of the 1998 Human Rights Act and should be declared incompatible.

In a handed down judgement today, the 3 justice panel comprising President Lady Hale, Deputy-President Lord Reed and Lord Kerr said that despite some legitimate differences of opinion within the court:

“Mr Conway could bring about his own death in another way, by refusing consent to the continuation of his NIV.”

“Ultimately, the question for the panel is whether the prospects of Mr Conway’s succeeding in his claim before this court are sufficient to justify our giving him permission to pursue it, with all that that would entail for him, for his family, for those on all sides of this multi-faceted debate, for the general public and for this court. Not without some reluctance, it has been concluded that in this case those prospects are not sufficient to justify giving permission to appeal.”

Mr Conway’s case followed almost two months after another assisted dying campaigner, Omid T, had lost a similar legal challenge and ended his life in Switzerland.  

It is unclear what the longer term implications of this judgement may be. There is some indication from the court’s focus upon Mr Conway’s non invasive ventilation, that it would be possible for a different claimant, without this option, to bring a new case in the future.

Phil Cheatle, Coordinator of My Death, My Decision (MDMD) an organisation which campaigns for the law to change said:

“The public overwhelming support a positive change in the law, to help those like Noel to die with the dignity they deserve. Sadly, our courts and our parliamentarians are divided.”

“Motor Neurone Disease robbed Noel of his independence. It will eventually rob him of his dignity. Tragic as this is, it is not because of Motor Neurone Disease that his family will now be robbed of a peaceful last memory. It is because the law is wrong. We will continue to fight to help those like Noel and countless others incurably suffering.”

Read more

Assisted Dying in the USA, A Good First Step But Room for Improvement

Assisted Dying in the USA, A Good First Step But Room for Improvement

My Death, My Decision’s Coordinator, Phil Cheatle, discusses the recent documentary by Louis Theroux and the implications it raises for the US Oregon Model.

The BBC2 documentary by Louis Theroux, “Choosing Death”, which aired on Sunday 18th November 2018 and is available on iPlayer until May 2019, showed examples of the Oregon/California right to die law in action. The Oregon model, which is now available in seven US states, has proven itself to be an important first step for the right to die. However, as “Choosing Death” demonstrated, it leaves considerable room for improvement in how people can be helped to have a better and safer assisted death. Four apparent weaknesses of the Oregon model, highlighted in the programme, are discussed below.

1) Improved safety of handling lethal medication.

The Oregon law does not involve medical professionals in the supervision of lethal medication. Once accepted as meeting the legal criteria the patient is given a prescription for the medication which they keep at home. Leaving lethal medication in the unsupervised hands of non-medics seems potentially dangerous.

2) Improved counselling and support prior to using the prescribed medication.

The film showed the difficulty of reaching a decision on the exact timing of when to use the lethal medication. This will always be difficult, especially for those with close family who are coming to terms with an inevitable loss. What appeared to be missing was independent professional counselling that might help families reach a shared agreement. This was portrayed strongly in the case of Gus, a 74 year old man with stage 4 pancreatic cancer. Eventually he and his family reached a decision which balanced both Gus’s need not to suffer indefinitely and his family’s need not to lose a husband/father too soon. Both Gus and his family clearly wanted to take the feelings of the others into account.

MDMD believe that professional counselling should be available throughout the process of an assisted death, to help an individual and their families discuss concerns that often feel uncomfortable to talk about. For example, whilst there is concern that families may sometimes pressure vulnerable people to end their lives prematurely, “Choosing Death” demonstrated that the inverse is also true when families feel uncomfortable accepting that a loved one wants to die, and are coming to terms with the loss they will feel.

“Gus, in some cases I know patients in your situation, there is pressure from the family. I’m curious, are you all on the same page?” – Louis Theroux

“Well I would have gone probably a couple of weeks ago. But I told Reyanna [his daughter] in order to give her, her support, that I’d go through Chemo. And so that’s what I’m doing. But I’m afraid I’m going to wait too long for AB15 [California’s Right to Die Legislation]” If you get too sick, you can’t hold anything down. And one of the tenets of the whole programme, is that you’ve got to be able to take the medicine yourself.  – Gus Thomasson

MDMD believe that a dying person needs to reach their own decision on timing, taking the views of their loved ones into consideration, but without feeling pressured. With appropriate training, good consultation should be able to ensure this happens. The eventual decision needs to be based on best medical advice on likely future quality of life, and a full exploration of all palliative care options as the situation develops. The family may need a facilitator to ensure that they understand and respect each others points of view, but do not pressure or coerce the dying person either to prolong or shorten life. Ideally these discussions should be built into the palliative care process, as happens in Belgium.

3) Without the option of a medically assisted death, those suffering from non-terminal medical condition, which reduce their quality of life permanently below the level they can accept, are forced to request unsafe alternatives.

The lack of professional counselling was particularly apparent in the case of Debra, a 65 year old, in a wheelchair, with early stage dementia-like symptoms. Her husband had died 5 months earlier, leaving her with no other close family. Debra’s condition was not covered by the Oregon-style legislation, so she had no professional medical assistance in her decision. Instead Debra contacted the Final Exit Network, (FEN), who provided two unregulated amateur “guides”¹. The guides seemed well-meaning and compassionate and provided verbal advice which helped Debra end her life herself, using equipment she purchased online.

Debra’s situation and death, demonstrates a significant failing in the Oregon care system. Her case raises a number of questions such as: Were all available choices adequately explored? Should people be driven to well-meaning amateurs for information on how to end their lives?

MDMD would like to see people like Debra have the option of a medically assisted death, but only after professional consultation and after it can be confidently said that:

  1. her decision was not the result of a curable depression
  2. her decision was not due to understandable but transient unhappiness due to her recent bereavement
  3. her decision was not something which would change if she received adequate support to adjust to her changed circumstances.

The Final Exit Network clearly provided some form of valuable consultation, in the absence of alternatives. However, end of life situations are invariably complex and require trained professional involvement to help individuals reach the decision that is right for them. It seems that the Oregon model could be improved in this respect by providing an assisted dying option for those like Debra. Whilst MDMD is sympathetic to Debra’s case and is grateful Debra could avoid a traumatic method of ending her life, her reliance upon the Final Exit Network demonstrates the need for a better law in Oregon.

4) Use of intravenous delivery of lethal medication to significantly reduce the time to die and increase the reliability of medically assisted deaths.

The final segment of the programme showed Gus and his family after Gus swallowed the lethal medication which he was prescribed. Although he appeared to be sleeping comfortably, the death took 7.5 hours.

To investigate the time that life-ending oral medication can take to end life MDMD contacted Dr. Erika Preisig, President of Lifecircle in Switzerland which offers medically assisted suicide to foreign nationals. She told MDMD that the longest duration of death by oral assisted dying she was aware of was 26 hours. (A case of pancreatic cancer where a patient can have a lot of stomach water (Ascites), which makes the uptake of the medication very slow.)  Dr Preisig explained that at Lifecircle, whenever possible they use 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 us 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”. Dr Preisig has assisted 386 people to die using this method. MDMD conclude that this seems a far preferable method than that used in the USA.

Louis Theroux’s documentary raised important questions about the Oregon model. For over 20 years, Oregon has been taken as an example for legislation elsewhere, both within the USA and around the world. MDMD believe it is an important first step, but that several issues remain unresolved by the Oregon-style approach. It is important to discuss these issues and learn from not only the Oregon experience but also other countries such as Switzerland, Netherlands and Belgium in any future attempt at changing the UK law.

There is ongoing debate in both Oregon and Canada as to what improvements may form the next step, particularly regarding degenerative diseases like Debra appeared to have. MDMD watches with interest as this will inform what might one day happen in the UK.

¹Update March 2020: Final Exit Network, (FEN), have informed us that their volunteers are trained and include physicians, nurses, hospice workers and social workers. Anyone applying for their help undergoes a FEN evaluation process before being accepted for support. This was not apparent in the documentary so our reference to ‘amateur guides’ in point 3 is a little misleading. We are pleased to clarify that.

Read more

PRESS RELEASE: A New Documentary Has Explored the Realities of Oregon’s Assisted Dying Model

On Sunday, BBC 2 aired the second installment of Louis Theroux’s new documentary series Altered States. “Choosing Death” followed the journeys of Gus, Lorri and Debra, as they grappled with a choice to end their lives.

Suffering from stage four pancreatic cancer, Gus was eligible to end his life under California’s 2016 End of Life Act. California’s law is modelled on the system and safeguards first established in Oregon in 1997.  Anyone seeking an assisted death must be over the age of 18, be of sound mind, have gained the consent of two doctors, waited for a period of 15 days after an initial oral request to die and be expected to die within 6 months or less. This approach is being made available in an increasing number of US states and will become available in Hawaii in January 2019. The film showed the difficulties faced by those dying, and their families. Deciding the time of death is particularly difficult, balancing the wishes of the dying person to avoid unwanted suffering for themselves and their family on the one hand, and the family’s wish to put off the loss of the dying person for as long as possible on the other. This is always going to be a difficult decision but much rather this (preferably with more independent professional support than was shown in the film), than have to suffer the final stages without the ability to bring it to an end when desired.

At one point viewers watched Gus as he broke down, saying his decision was a “burden on [his] loved ones because they [didn’t] want [him] to go”. “I feel like I’m letting [them] down, when I decide to take that option.” Admitting if he was completely selfishly he would have ended his life many months earlier than he did.

Gus and his family did agree a time for him to die by swallowing the prescribed medication. He died peacefully with his family, however the death took over 7 hours. In contrast, Lifecircle, a Swiss organisation which provides medical assistance to die, uses an an intravenous (IV) method controlled by the patient.

Dr Erika Preisig, President of Lifecircle, told MDMD that the time taken by the Lifecircle method is “always the same, 30 seconds to fall asleep, and 4 minutes to die. No coughing, no vomiting, no pain at all.” Dr Preisig, has assisted 386 people to end their life using this method. It appears to have clear advantages compared to the US method, but still allows the patient to take the final action themself, something required by Swiss law.

Viewers also saw Debra, a 65 year old wheelchair-bound widow, ineligible under Oregon’s law for an assisted death. Debra also suffered from dementia like symptoms – something she knew would lead to an intolerable decline for her. Following the death of her husband she had no close relatives. She sought advice from a group called Final Exit Network, FEN. Their two “guides” were compassionate and offered only advice (they did not provide equipment or physically help with Deborah’s death). With their guidance, Deborah chose to end her life.  

Following its broadcast the BBC 2 documentary sparked an online debate as to whether the UK should change its law. In 2015 Rob Marris MP, had introduced an Oregon style assisted dying bill into Parliament, but had failed to pass it during its first reading, losing 118-330 against.

Phil Cheatle, Coordinator of My Death, My Decision, a UK organisation which campaigns for a change in the law has said:

“Yesterday’s documentary highlighted precisely why My Death, My Decision is campaigning for a more inclusive change in the law. Few won’t have sympathised with Debra’s story. Despite possessing a clear and settled wish to end her life and the capacity to make such a choice, the law did not allow her the help and support she needed to end her suffering. To respect someone’s dignity, to uphold their autonomy and to act compassionately, the law must allow assistance for those whose medical conditions give intolerable and incurable suffering regardless of their life-expectancy.”

“It is up to society to provide as much help as possible, but up to the person themselves to form their own view of whether this is sufficient. With the right support some can and do live fulfilling lives, despite the very difficult medical situations they endure. However this is not always possible. For those who, after careful and informed consideration, decide that their quality of life is permanently below the level  they can accept, the law needs to change.”

“The film raises questions about unregulated well-meaning amateur groups like Final Exit Network. MDMD believes that a legal, regulated, professional assessment and support process would be a much safer way to ensure that people like Debra were making the right choice for themselves, having carefully considered all the options, before having a medically assisted death if that is their well-considered and persistent wish.”

“Louis Theroux’s documentary highlighted the empowering choice those who are within six months of dying possess in California. For those who are of sound mind and either terminally ill or incurably suffering, it is time for the UK to offer that choice as well.”

The final episode in Louis Theroux’s series “Take my Baby” will air on Sunday 25th November at 9pm.

Read more

Videos from Healthcare and Secularism 2018 Conference

In October 2018, the National Secular Society and the Secular Medical Forum held a joint conference on Healthcare and Secularism. The final two talks concerned assisted dying and the right to die. Both talks were excellent. Videos of the talks are available on YouTube and are embedded here with some description and comments.

1. Dr. Jacky Davis – An Update on Assisted Dying – One hundred million people now have access to it, why can’t we?

Jacky Davis is the Chair of Healthcare Professionals for Assisted Dying (HPAD). Jacky is also a consultant radiologist at Whittington Hospital; a member of the BMA Council and of the BMA ethics committee; and a board member of Dignity in Dying.

The talk makes many excellent points – especially in covering why it is so difficult for the BMA to change its approach on assisted dying. Policy is decided by an annual conference of only 300 people. The BMA have so far refused to hold a ballot of all their members on whether to adopt a neutral position on assisted dying. MDMD strongly endorse Jacky’s calls for the BMA to hold such a vote.

Of particular interest to MDMD is Jacky’s description of a public debate in Gloucester which she took part in prior to the 2015 Marris Bill debate in the House of Commons. She said “I was in a position I often find myself in. I was being attacked because they [the audience] didn’t think that our position on assisted dying went far enough.”

Jacky went on to discuss criticism of the 6 month criterion. She dismissed, as “another straw man”, the argument used by some, that the difficulty of accurate prognosis was a reason for not changing the law. She then described those who wish to be able to have a medically assisted death: “These people are not people who want to commit suicide. These are people who want to live as long as they can, until they don’t want to any more.”

One really positive suggestion Jacky put forward was with the practicalities of doctors working with an assisted dying law. She estimated that, extrapolating from the situation in Oregon, each GP practice would expect to see one patient who wanted as assisted death every 7 years. GPs might reasonably be concerned that they wouldn’t know how to deal with such rare events. Jacky suggested regional teams of trained experts who GPs could work with.

2. Dr Michael Irwin – When will MARS (Medically Assisted Rational Suicide) land on the UK?

Michael was Medical Director of the United Nations; chairman of the Voluntary Euthanasia Society prior to it changing its name to “Dignity in Dying”; and a past president of the World Federation of Right-to-Die Societies. He founded the Society for Old Age Rational Suicide in 2009 and was its coordinator until 2015, after which it was renamed “My Death, My Decision” (MDMD). Michael is a patron of MDMD.

Michael picked up on a number of points made by Jacky, saying “I’m very much is favour of the Oregon Bill, but as a start, it should go much further.”

Michael discussed some different approaches to defining “terminal illness”, contrasting a GMC reference to “dying over the next 12 months” to the Oregon Bill’s 6 months, and the situation in Scotland where a recent change to benefit legislation replaced a 6 month “terminal illness” criterion with an evaluation by doctors on a case by case basis without requiring an estimate of life expectancy.

Michael pointed out that there is currently uneasiness in Oregon over their 6 month criterion with moves to expand it to cover longer term degenerative diseases.

MDMD Conclusions

These are two very experienced campaigners, both with a strong medical background. It is fascinating to hear both the common ground and the differences in their views. From MDMD’s perspective Jacky’s defence of the 6 month criterion does not stand up to serious scrutiny, although it may be a realistic political compromise in the UK and elsewhere in the short or medium term. We recognise that is has provided an important option to millions of people around the world – which we in the UK do not have.

However, dismissing the difficulties of accurately giving a life expectancy prognosis as a “straw man” seems too simplistic. Even without the moral dilemma of assisted dying, Scottish doctors found the criterion unacceptable and successfully pressed for this to be removed as a criterion in benefit assessments. If this is the case for benefit assessment, why not also for assisted dying?

Even more importantly, MDMD fully agrees with Jacky’s statement that the people who should be allowed access to medical assistance to die are “… people who want to live as long as they can, until they don’t want to any more”, (when this is due to the intolerable and incurable medical conditions they face, which even the best palliative care cannot alleviate). But Jacky’s description includes high profile cases like Tony Nicklinson, Debbie Purdy, and Omid T. None of these people could be helped by the Oregon-style law she advocates. In addition, some of those in early stage dementia fit her description, while they retain mental capacity – people like Alex Pandolfo who plans to go to Switzerland to end his life when his condition becomes unbearable for him. They face the later stages of dementia when mental capacity will be lost, but are also ineligible for help from an Oregon-style law. Dementia is now the cause of 1 in 8 of all deaths in England and Wales – and nearly 1 in 4 deaths of women over 80, according to the latest ONS data.

In her final interview, in December 2014, Debbie Purdy, who worked closely with Dignity in Dying in her campaign work, said “I think Lord Falconer, in saying that if you’re within the last six months of your life, misses the point that Tony Nicklinson, myself, Paul Lamb – the people whose cases have all been public – all have to face decades of a life that we don’t consider acceptable, and that is the thing I find hardest.” Michael Irwin, together with MDMD, Friends at the End and Humanists UK, very clearly support Debbie’s point of view. Jacky Davis failed to explain why she advocates an approach which wouldn’t help people like Debbie, while at the same time arguing for “people who want to live as long as they can, until they don’t want to any more”, to have the option of a medically assisted death, which is just what Debbie wanted. With this approach, we expect that Jacky will continue to hear the views she described from her audience in Gloucester.

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.