American Family Physicians Association (AAFP) changes position on medical aid in dying

In October 2018 it is reported that the American Academy of Family Physicians (AAFP) broke ranks with the American Medical Association (AMA) by adopting a position of “engaged neutrality” on assisted suicide and euthanasia.

At its Congress of Delegates in New Orleans the AAFP, the second largest component society of the AMA with more than 131,400 members voted to adopt a position of “engaged neutrality” and to reject the use of the terms “assisted suicide” or “physician-assisted suicide”. “Through our ongoing and continuous relationship with our patients, family physicians are well-positioned to counsel patients on end-of-life care, and we are engaged in creating change in the best interest of our patients,” said the AAFP president Michael Munger, a physician from Kansas.

This is important in the UK because the BMA radically opposes assisted dying, whereas the BMJ has come out in favour of putting it to the vote, to show the true picture amongst British doctors.

Often it is the minority groups such as ‘Care Not Killing’ which shout the loudest. I once heard a story of a Methodist Minister trainee student who wrote his sermons out in full with notes in the margin. On one occasion one of his colleagues happened to come upon one of these sermon transcripts and was amused to read in the margin ‘weak point, shout louder’.

In the UK. nurses are the largest group of care providers for the terminally ill, so it is not surprising that following an extensive and detailed consultation process with their members, the Royal College of Nurses moved in 2009 to adopt a neutral stance in relation to assisted dying for people who have a terminal illness.

It is time the BMA followed suit and stopped giving politicians an excuse against seeing reason and voting for legislation allowing Assisted Dying for the terminally ill and those suffering long term incurable health conditions which have reached a stage of relentless suffering, provided this is their own persistent wish.

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MDMD Coordinator asks Baroness Finlay how to avoid late stage dementia

On 29th November 2018 Baroness Ilora Finlay gave a talk at Bristol University titled “As the light fades: Do law and ethics collide?”. Baroness Finlay is a professor of palliative medicine at Cardiff University and a long-standing prominent opponent of assisted dying. Her talk gave a full account of the problems and dangers she sees with assisted dying legislation as it exists in various countries around the world. MDMD is sympathetic to at least some of her concerns, but reaches different conclusions. In Baroness Finlay’s view no change in the law is necessary or desirable, in part because one option people already have is to refuse life sustaining medication.

In the Q&A section MDMD Coordinator, Phil Cheatle, asked a question regarding dementia, a terminal illness where sufferers do not require life sustaining medication which can be refused. Dementia is particularly important as it is feared by many people and is increasingly common. The discussion about how assisted dying can safely be made available to dementia sufferers is something which is actively being discussed and reviewed around the world. In Switzerland medical assisted suicide is permitted for those with early stage dementia provided the person still has the mental capacity to make a life ending decision at the time of the assisted death. In the Netherlands and Belgium euthanasia is permitted for those with dementia who lack mental capacity provided they have written an advance decision requesting euthanasia in those circumstances. In USA and Canada there is public debate about possibly broadening their assisted dying laws to include people suffering with dementia.

In Phil’s question to Baroness Finlay he explained that his experience of his mother’s end of life suffering from dementia taught him that he really didn’t want to die like that. He then asked:

 “What should I do to avoid an unpleasant death from dementia?”

Baroness Finlay started by saying that with dementia a patient doesn’t have mental capacity. Phil clarified that he was thinking of early stage dementia before mental capacity was lost. Baroness Finlay then said “Putting it bluntly, there’s no law against committing suicide.” Phil responded by asking how people should do this without access to appropriate medication. She replied by saying that “there are people ordering drugs over the internet now and taking overdoses”, though she was very clear that she was not suggesting that people should do this. Phil followed up by pointing out that this was highly risky, and that you can’t be sure what you are buying. Surely there must be a safer way to ensure people have a good death?

Baroness Finlay then explained that if society were to decide that lethal medication was to be legally obtainable within the UK, then there would need to be a body which brought a set of different skills together to ensure safeguards were followed. She mentioned clinical psychologists, for example, to assess the person’s mental state. She questioned whether the medical profession should be involved at all, saying “why is it a medical duty, if you want to commit suicide and you have early dementia and you have capacity, then why is it a medical duty to supply you with lethal drugs? And if the law is going to change, why not have other groups in society assess you, people who can legitimately make sure that you’re not being coerced, that you’re not being pressurised?”

Reflecting on her answer afterwards, Phil Cheatle said: “It is very surprising that Baroness Finlay answered my question by saying that ‘there’s no law against committing suicide’, as if that were an acceptable answer to the very real concern that I raised. Surely palliative care should be able to offer something more compassionate, while respecting the person’s end of life wishes? Feeling the need to take one’s own life, without the opportunity for professional help in evaluating if that is really the best death possible, and without safe access to appropriate methods, is something MDMD wants to avoid. The MDMD website lists many reasons why taking your own life, unaided, is dangerous and unacceptable.”

“MDMD shares Baroness Finlay’s desire for strong, effective and workable safeguards in any assisted dying legislation. We welcome any opportunity for constructive discussion about the nature of the regulatory body she suggested. This approach may be a way forward to break the current impasse between the medical, legal and political positions. However, MDMD would prefer assisted dying to be closely integrated with palliative care, as happens in parts of Belgium, as this would help ensure that all palliative options were considered before choosing a medically assisted death.”

[Updated 18th May 2019 after MDMD was given access to a transcript of the discussion of Phil’s question which enabled a more accurate reflection of the views Baroness Finlay expressed.]

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Talking about Dying – More than Meets the Eye?

Recently the Royal College of Physicians (RCP), in a widely reported statement, called for doctors to start talking about death earlier. It followed from a report, “Talking about Dying”, which found only 4% of patients talk to their doctors about dying or benefit from advanced care planning.

“Too many patients are being admitted to hospital without ever having discussed serious issues like DNACPR (do not attempt cardiopulmonary resuscitation) or their ceiling of treatment despite chronic, life-limiting conditions and frailty. We act on default because we don’t know what the patient wants.” – Medical Registrar cited in the report

Stating that open dialogues, although sometimes “challenging”, were essential to good medical practice the RCP identified three barriers to end of life conversations: culture, confidence and practicalities.

On culture, the RCP found a systematic gap between patient’s expectations and clinical practice. In particular, they found whilst 77% of patients would prefer being told if they had less than a year to live, a majority of doctors preferred not discussing the topic. The report also found that “death [is widely viewed] as a failure” amongst the medical community, and a culture exists which prevents patients from discussing the acceptable limits to treatment. Indeed the report found many doctors believe their role is to “cure all ailments”, thus meaning that they believe they should always “do something to help [even if it resulted] in unnecessary aggressive treatment”.

On confidence, the report found that at all levels doctors feel unprepared to talk about dying. Specifically, the RCP found that junior doctors feel most unprepared, because they often lack opportunities to practice end of life conversations and consequently feel worried about initiating them.

Finally, on practicality, the report found most doctors were unclear at what stage conversations should begin. Additionally, doctors were unclear which healthcare professionals should be responsible for conducting end of life conversations. Indeed, many staff admitted “they were reluctant to start conversations … if they could not finish them … themselves”.

“There could be a whole population of people who, even at 60 years, may not want resuscitation. If we don’t ask them, they’ll just get it. This should be a routine conversation with every single person.” – Trainee Doctor cited in the report  

The RCP report stated that these barriers were a serious concern, because doctors “need to be equipped to offer patients honest conversations about what they can expect in the future, [and] to give [patients] choice and control over the remainder of their days”. Their report highlighted five main benefits to open conversation about death:

  1. Early planning often improves a patient’s quality of life and mood
  2. Early planning often reduces the need for aggressive treatment later
  3. Early planning improves a doctor’s ability to deliver a patient’s wishes
  4. Early planning often enables better pain relief for a patient
  5. Early planning can in some cases extend a patient’s life

Consequently, the RCP recommended a raft of proposals to improve the dialogue between doctors and patients. For example, they recommended better training for undergraduates, a public awareness campaign and a better understanding of an end of life conversation’s purpose. The RCP stressed, that conversations should not be considered singular events, but rather understood as a continuing process of “encouraging a patient to think about their preferences”.  Interestingly, the Royal College also suggested conversations should not begin in the last phases of someones life, but could and should begin at any point.

MDMD strongly endorse these conclusions. We promote these discussions with medical professionals both as part of possibly refusing medication and as part of end of life planning using advance decisions to refuse treatment, advance statements of wishes to guide “best interests” decisions, and lasting powers of attorney for health and welfare. We also strongly encourage discussion with family and close friends. These discussions can help both the person whose life will soon end, and those who they will leave behind.

In the light of this report, and the excellent book “Being Mortal” by Atul Gawande, which touches on similar topics and the over-medicalisation of our care for the elderly, perhaps the medical professions should get initial conversations started long in advance of any serious illness, during routine medical check-ups in people’s 60’s and 70’s?

Two factors indicate that “Talking about Dying” may signal a subtle shift in the Royal College of Physicians in this direction.

1) Good End of Life Planning “is not just about high quality palliative care in the last weeks or days”.

Throughout the RCP’s report palliative care examples were heavily drawn upon to evidence their claims. Indeed, the report even went so far as to ultimately conclude that physicians find end of life conversations difficult, because “there are not enough palliative care specialists”.

Despite this, “Talking about Dying ” is important, because it signals that the Royal College of Physicians may be moving away from a simple insistence that good palliative care is all that is required.

My Death, My Decision welcomes this movement. Palliative care is an important end of life choice, and it brings relief to a very large number of suffering individuals. However, it is important to acknowledge that for all its benefits, palliative care is not sufficient for everyone, in all situations. Palliative care is principally a pain oriented form of treatment. Thus, it is limited in the extent it can help individuals who fear a loss of dignity and autonomy. Without the option of an assisted death, should they eventually need it, some people quite understandably fear that their end of life will be intolerable for them. This fear alone can prevent them having a good death.

We believe that palliative care and assisted dying are neither alternatives nor antagonistic options. Experience in parts of Belgium has demonstrated, for over a decade, that the two can work in tandem. My Death, My Decision would encourage any future change in the law to adopt a similarly integrated approach.

2) Doctors are uncomfortable with diagnosis of less than 12 months to live

Another interesting aspect of “Talking about Dying”, was the Royal College’s frank admission that “Professionals are often reluctant to initiate conversations about the end of life because they are not sure that the patient will die within the next 12 months”.

MDMD fully understands that it is impossible for doctors to make accurate predictions on life expectancy. They should not be expected to do so, not in relation to when to start conversations about end of life treatment, nor in relation to eligibility for welfare benefits, nor in decisions as to whether someone might be eligible for an assisted death. Patients and legislators need to accept this too.

Patients wanting to discuss end of life options, should not be refused a conversation merely because an accurate life expectancy assessment is impossible, regardless of any timescale. MDMD believes that those suffering from non-terminal illnesses, such as Locked-in Syndrome or Multiple Systems Atrophy, are entitled to the same conversations and choices as those whose end of life is sooner and more predictable.

The Royal College of Physicians seem to reflect a wider trend of doctors pushing back against  a rigid 12-6 months time frame. For example, in Scotland it was recently decided that “terminal illness”, as it applies to the right to certain benefits, is now determined by doctors without any need for an estimate of life expectancy. Further, in Canada the Medical Assistance in Dying law there is applicable to those with a “reasonably foreseeable death”, again with no specified time limit.

An area that “Talking about Dying” doesn’t cover, but should, relates to a patient’s wish for a meaningful conversation about assisted dying. Without this doctors can never have the sort of open, honest “Talking about Dying” conversations which some patients wish for. In this sense the doctor patient relationship is currently broken and needs fixing by giving doctors the freedom and professional protection to:

  1. discuss options like medically assisted suicide in Switzerland, refusal of food and drink, and rational suicide. Even if they cannot assist in these options.
  2. provide documentary evidence of the patient’s condition together with medical records. Patients should not fear discussing their well-considered options in case doctors attempt to withhold that essential information as a method of frustrating a patient’s attempts to arrange a medically assisted death abroad.
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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.”

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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.

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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.

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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.

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Dementia and Alzheimer’s still increasing as leading cause of death

The Office of National Statistics has recently published data on cause of death in 2017. For the third year running Dementia and Alzheimer’s is the leading cause of death, and the trend is increasing. We have been monitoring this significant trend since it was first reported in 2016. See our previous reports on the 2016 and 2015 data.

The first summary point of the report on the 2017 report states:

“Deaths due to dementia and Alzheimer disease increased again in 2017 and it remained the leading cause of death in England and Wales, accounting for 12.7% of all deaths registered.” (This compares with 12% in 2016 and 11.6% in 2015)

The report breaks the data down by gender: “Dementia and Alzheimer disease remained the leading cause of death for females in 2017, accounting for 16.5% of all female deaths, an increase from 15.6% in 2016.” For men the leading cause of death is ischaemic heart diseases, accounting for 13.7% of male deaths.

For the over ‘80s Dementia and Alzheimer disease remained the leading cause of death for both men and women. For men it was responsible for 15.1% of deaths aged 80 years and over, (up from 14.3% in 2016 and 13.7% is 2015). For women it was responsible for 23.2% of deaths over 80. (up from 22.2% in 2016 and 21.2% in 2015)

The annual ONS report groups causes of death according to a classification system developed by the World Health Organization (WHO), modified for use in England and Wales. The report explains that “at the broad disease group level, cancer remained the most common cause of death in 2017 (28.1% of all deaths registered), followed by circulatory diseases, such as heart diseases and strokes (25.0%).” However this latest report gives a greater level of detail in its analysis, separating out various different cancers for example

The report identifies several reasons why the statistics are showing a marked increase in deaths due to dementia and Alzheimer disease:

  • People are living longer and surviving other illnesses. Dementia and Alzheimer disease mainly affects people aged over 65 years.
  • Male life expectancy has been increasing faster than women’s. This is thought to contribute to the increase in death due to Dementia and Alzheimer disease in 2017
  • Better understanding is likely to have led to increased levels of diagnosis and a higher incidence of identifying Dementia and Alzheimer disease as the primary cause of death on death certificates.
  • The way in which cause of death was coded was changed in 2011 and 2014. This increased the number of deaths attributed to dementia.

MDMD’s coordinator Phil Cheatle says: “This continuing trend highlights the increasing importance of dementia and Alzheimer disease, especially for the elderly. It reinforces MDMD’s position that assisted dying legislation needs to give the option of an assisted death to people suffering from these terminal diseases. We believe that this can only be done safely while the person still has the mental capacity to make a life ending decision. This applies to people in the earlier stages of dementia and is the criterion used for dementia sufferers who seek a medically assisted death in Switzerland, like MDMD campaigner Alex Pandolfo. Unfortunately a law restricted to those with a life expectancy of six months or less would not help dementia and Alzheimer sufferers as by the time they reach this point, (which is impossible to accurately predict), they will not have sufficient mental capacity.”

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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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The Omid T Judicial Review: “Bound to be Dismissed”?

MDMD’s Campaigns and Communication Manager, Keiron McCabe, breaks down the judgement behind Omid’s defeat.

On Tuesday 2nd October 2018, Omid T’s assisted dying case , known as R (on the Application of T) v Ministry of Justice [2018] EWHC 2615 (Admin), lost at its first hurdle in the High Court.

In order to challenge the UK’s prohibition of assisted suicide, it was necessary for Omid to bring a judicial review. This is the process in which the courts appraise the validity of a law based on a number of strict criteria, one example being a disproportionate infringement of the Human Rights Act 1998. Omid’s legal team argued because terminal and incurably suffering patients cannot access an assisted death, their rights to a private and family life were infringed and Section 2(1) of the Suicide Act 1961 must be declared incompatible with Omid’s human rights. In some respects this meant that Omid’s case was similar to Tony Nicklinson’s 2012 case , though different from Noel Conway’s current appeal which only focuses on the rights of terminally ill patients.

However, prior to its ruling, Omid’s case had acquired a considerable interest from the legal community because of its unique evidenced-based approach. Usually judicial reviews do not deal in evidence. It is assumed a review is merely on a matter of law as the facts are agreed in advance. Indeed the UK’s civil procedure rules, the rules which guide conduct in the courts, make no mention of evidentiary rules such as cross-examining witnesses for judicial review – it is a rarity, granted only at the discretion of the courts.

Omid’s case garnered such an intense interest precisely because it was attempting to argue that the UK’s law infringed human rights based on evidence. In doing so, Paul Bowen QC, Omid’s lawyer, was seeking to emulate the Canadian case “Carter v Canada”, which legalised assisted dying when the Supreme Court of Canada found as a matter of fact:

“no evidence from permissive regimes that people with disabilities are at heightened risk of accessing physician-assisted dying;”

“no evidence of inordinate impact on socially vulnerable populations in permissive jurisdictions;”

“no compelling evidence that a permissive regime in Canada would result in a ‘practical slippery slope.’”

Considering the profound implications such an approach would have had on the right to die in the UK, the courts decided before commencing a full 3-4 week examination of the evidence, Omid had to prove that his case should be granted the rare discretion to cross-exam witnesses. However, it was agreed since the Court of Appeal may hear relevant issues whilst it was separately dealing with the Conway case, that the High Court would not pass judgement on the Omid case until afterward Conway.

“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.” – Omid T

Last Tuesday, Lord Justice Irwin, with whom Mr Justice Phillips agreed, ruled that Omid’s legal team did not have permission to cross examine the main witness, Baroness Finlay, and the case therefore could not progress to a full judicial review.

Omid’s ruling itself was somewhat complicated by the Conway case, as it was held that the evidence in the two cases “overlapped in great measure” . Indeed, Lord Justice Irwin went further and foundthat even though Conway’s case only focused on terminally ill patients, there was not a “material distinction” in the evidence between Conway and Omid’s appeals. This was because the evidence used for Omid’s appeal included information about jurisdictions in which assisted dying is only legal for those who are terminally ill and not both terminally ill/incurably suffering.

Additionally, Paul Bowen QC conceded, that following Conway, the evidenced-based approach of Omid could not succeed because the High Court would be “bound to find against [Omid]”.

However, even disregarding that concession, Lord Justice Irwin stated that he would have “reached the same conclusion in any event”.

Fundamentally, Lord Justice Irwin rejected the notion that a legal case on assisted dying could be assessed on the basis of factual evidence alone. He held that: “There exist facts bearing on the issue in question, and there are also a range of questions not reducible to hard fact, about which opinion must be formed and considered. The content of a study of impact of the legislation of euthanasia in the Netherlands is principally a question of fact. The methodology, rigour and accuracy of the conclusion of such a study is properly a question of expert opinion. The implications of such a study for the outcome of any english legislative change consequent on a declaration of incompatibly is not a ‘fact’, but a question of judgement about the future, and moreover is arguably a question beyond the special expertise of some (or perhaps all) of the instructed experts.”

He further stated that he did not have “any clear idea what…would be gained by oral evidence”, as opposed to second hand evidence such as published reports, and  concluded “…the factual foundations for the views of various experts are either already clear, or can be clarified…based on written material…Mere differences of opinion or judgement will be evident from the existing reports and should not be the subject of further exchanges”.

As a final matter, Omid’s lawyers argued that even if their evidenced-based approach was bound to fail, the terminal-incurable distinction between Omid and Conway’s cases meant that Omid faced a strong chance along a more traditional judicial review route. Hence they requested for Omid’s case to be “leapfrogged” to the Supreme Court. This would mean, that instead of having to appeal to the Court of Appeal and then to the Supreme Court, Omid’s case could have been heard directly by the most authoritative court in the UK. However, Lord Justice Irwin considered this request to be “premature” and decided that Omid’s legal team could not start asking for their case to progress before it had even been given judgement. Lord Justice Irwin offered a glimmer of hope by suggesting that if the team wanted to continue, he would “do what is possible to facilitate speedy hearings for any further applications”. However, this prospect is very unlikely given that Omid sadly ended his life(link to previous Omid ends life article) at the Swiss Lifecircle clinic 5 days before the court gave its judgement. Omid’s case is therefore without a claimant, and its future is unknown.

Lord Justice Irwin’s reluctance to grant Omid an evidenced based review, though disappointing, is understandable. The High Court is a relatively junior court in the UK judicial hierarchy and at the most senior level,  Assisted Dying has proven itself to be an issue of immense complexity for the Supreme Court. Hence it is understandable, faced with such a momentous decision, the High Court erred on the side of caution.

However, My Death, My Decision does not think the High Court reached the correct conclusion. In 2017, before she was recently appointed to the Supreme Court, Lady Arden,  delivered an excellent speech on the issues of patient autonomy and medical law. In that speech, Lady Arden recognised that sometimes, on issues of particular importance, the UK courts may have additional responsibilities in conducting a judicial review. She said when a topic is so important, as Assisted Dying is, that Parliament will likely look to the courts, for some assistance, the courts may be required to examine information “in greater detail than it would have done before … and [deliver] a special type of judgement”. Similarly, in a 2015 case , decided above the High Court in the Court of Appeal, Lord Justice Lewison said that if the “justice” of a special case required a fuller examination of evidence,  a court may permit the use of cross examination within judicial review.

Reflecting on these statements, it is clear that the ethical and moral implications of Assisted Dying mean it is a topic of special importance. Assuming that Parliament will turn to the courts for help, the justice of Assisted Dying must require our courts to conduct an investigation on fullest possible terms.  Cross examination is a necessary part of that greater investigation. Unlike carefully crafted statements, cross examination is a candid process. For example, an expert who presents evidence may be sensitive to avoid inconvenient or inconsistent information within a written statement. Yet, when an expert is asked to confront their own inconsistencies or to address moot issues which may undermine their argument, such problems cannot so easily be avoided.

Alternatively, those who support the Omid ruling could argue that a good lawyer should spot these inconsistencies anyway and could bring them to the attention of the court themselves. Yet, Lord Irwin rightly said this approach would not be good. A good lawyer will only ever be able to spot such problems due to advice from a different expert and judges already know such differences of opinion between experts. Additionally, judges are shrewd professionals and are well trained to listen skeptically to the arguments of good lawyers. However, they may be more willing to defer to the credentials of an expert. Cross examination is therefore an important tool to assess the strength of an experts evidence. Whilst lawyers may, to some extent, be capable of clarifying issues, they will never speak with the same authority as someone can about their own evidence.

My Death, My Decision believes any debate on Assisted Dying should be based on the fullest of evidence available. Whilst Omid’s case may be disappointing, it was not brought in vain. Omid highlighted the intellectual inconsistencies in advancing a right to die merely for those with a terminal illness. Moreover, if nothing else, the ambition of Omid’s approach may yet bear fruit, as if Conway moves to the Supreme Court and Lady Arden is sitting, a fresh opinion on the value of an evidenced based approach may yet still be possible.

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