Jersey Government Will Research Assisted Dying Reform

Last week, Jersey’s Council of Ministers announced that a new commission will research end of life options, including the legalisation of assisted dying and dying well The announcement follows after more than 1,800 people signed a petition from End of Life Choices Jersey (MDMD’s partner in the newly formed Assisted Dying Coalition).  

Tanya Tupper, whose terminally ill mother Roberta is planning to end her life in the Swiss clinic Dignitas, began the campaign to change the law. Last year, after contacting Jersey’s’ election candidates she found that around a third of Jersey’s candidates would have supported changing the law to permit assisted dying in Jersey.

In answer the petition, Health Minister, Deputy Richard Renouf said that “much of the debate in other jurisdictions has been underpinned by shared values of care, freedom of choice and compassion. It is these shared values that we should now draw on in reviewing our own laws on end-of-life care to understand if a change is needed, and, if so, how to make that change”.

Jersey’s research will aim to bring together international research and focus upon: eligibility criteria for an assisted death, protection and safeguards for patients, the registration of medical practitioners, and ethical codes of conduct.  

Jersey, an island of over 100,000 people, would be the second channel Island to consider legalising assisted dying, after Guernsey’s parliament voted against a similar proposal in May 2018.

Responding to the announcement, MDMD’s Campaign Policy Director, Phil Cheatle, who delivered a talk to the Jersey campaign group last year, said:

“My Death, My Decision is delighted by the by Council of Ministers’ decision, and congratulate our partners End of Life Choices Jersey on their process. It could give dignity to those, whose illness steals it from them; freedom to those, otherwise condemned to years of suffering and peace to families, forced either to let their loved ones suffer or risk imprisonment.”

“Having opened the door to a more compassionate approach to dying, I urge the Council of Ministers to review the evidence on an objective basis, and adopt a law which strikes a kinder balance between empowering individuals, respecting their dignity, and protecting the most vulnerable with stringent safeguards. Many in the UK and channel Islands will now look to Jersey to lead the way on this issue. Now is the time for the law to change.”

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“I readily acknowledge that many of these cases are tragic.” says HM Advocate General for Scotland and MoJ spokesperson for the Lords The Rt Hon Lord Keen of Elie QC

Today, in an oral question relating to the Crown Prosecution Service’s (CPS) Policy for Prosecutors in Respect of Cases of Encouraging or Assisting Suicide, several members of the House of Lords, asked Lord Keen about the law prohibiting on assisted dying. Below is a transcript of the questions.

Assisted dying is legal in Belgium, Canada, Colombia , The Netherlands, Luxembourg, Switzerland and seven US states. Last week, new figures released by the UK Assisted Dying Coalition, which includes My Death, My Decision, found that more than one person a week now travel to Switzerland, each week, to end their life. Individuals such as Geoff Whaley, an 80 year motor neurone disease suffer, who traveled to Switzerland last week to end his life only last week.

Under Section 2(1) of the Suicide Act, any action to help another person to end their life is illegal, and those convicted face up to 14 years in prison.  In 2015, parliament rejected by 330 against to 118 in favour, Rob Marris’ private members bill to legalise assistance for those who were terminally ill and likely to die within 6 months.

Responding to a question from Baroness Blackstone. Lord Keen said:

“The CPS policy on assisted suicide provides guidance for prosecutors on assessing the evidential and public interest stages, in reaching decisions on cases of encouraging or assisting suicide. The policy sets out the factors, which must be applied in reaching decision in these cases, and balances the various important factors which need to be considered. There are no plans on reassess the CPS policy in such cases.”
In response, Baroness Blackstone asked: “Does the Minister really think, it is a good use of police time to interview, under caution, the wife of a dying man who wishes to choose how he dies? In light of the Whaley story, and the treating of families like criminals, does the Minister think that the law is working well?”
He replied: “It is for the CPS to apply the law, not make the law. Every case must turn on its own facts and circumstances, where matters are drawn to the attention of the police of matters relating an assisted suicide or potential assisted suicide, they will investigate. They are bound to investigate what is potentially criminal conduct in terms of Section 2 of the Suicide Act. I see no reason why they should pause those investigations given the current state of the law.”
Also asking Lord Keen about the law relating to assisted dying, Lord Pannick, who recently acted in Noel Conway’s legal case to change the law for those suffering from a terminal condition, said: “Does the Minister recall that the CPS policy was adopted after the Debby Purdy case in 2009, because of the uncertainty of the law. Does the Minister accept that there continues to be very considerable uncertainty in this area, which is causing enormous distress to those at the end of their lives and their families?”
He was told: “A consultation was prompted by a decision of the courts, that led to a consultation exercise in September 2009 to which there were more than 5000 responses, and resulted in the publication of the CPS policy document in 2010. I consider that that policy is working well at the present time.”
Next, Lord Sherbourne of Didsbury asked: Does the Minister understand that for people with a terminal illness, with no hope of recovery that are suffering great distress, that for these people the current law, which prevents them from being able to end their own life in dignity, is condemning  them to great and unnecessary suffering?
He was told: Of course we are conscious of the difficulties and challenges facing people, in the situation outlined, but again I emphasise it is for the CPS to apply the law not make the law. In doing they they follow a policy that not only addresses an evidential test but also a public interest. The consequence is that in the 140 cases referred in the last 9 years, there were prosecutions in respect of section 2 of the Suicide Act in only 4 of those cases, resulting in 1 acquittal and 3 convictions.
Lord Low if Dalston, then asked: The police are only enforcing the law, so it is really the law which is the problem, rather than the police. When will the government bring in a new law to free the police from having to treat loving families like criminals?
He was told: It is not a case of having to treat loving families like criminals, it is a matter of having to look at the facts and circumstances of every case, in which the victim may be extremely vulnerable. It is therefore, as the government has said before, a matter for Parliament because it is a matter of conscience, and it is not a matter for government to bring forward such legislation. Lord Low will be aware that such legislation was proposed in 2015 and did not succeed.
Baroness Barker, then asked: Given the statistics just quoted is that not in itself, an indication that the law is not working? She was told: No I do not think so. I say only in a small minority of cases has there been a successful prosecution. I should also add however, that there have been a number of instances, in which the case which was taken forward involved prosecution for homicide not assisted suicide.
Following this, Baroness Meacher said: Indeed, Geoff Whaley did die from a dignified death in Switzerland last Wednesday, but most people can’t afford to take their families to Switzerland for such a death, or they can’t get the medical report from their doctor to have such a civilized death. Does the Minister agree that in a civilized society, someone in Geoff Whaley’s position, should be able to avoid months of being unable to swallow, to eat, to drink, to speak, or move and totally therefore cut off from communication. Will the Minister discuss with his colleges what can be done to change the law?
Lord Keen replied: It is not the intention of the government to seek to change the law in this area. I emphasise that every case needs to be considered according to its own particular facts and circumstances. I readily acknowledge that many of these cases are tragic.
Finally Baroness Chakrabarti asked:
Whatever the conflicting views, and there are many, on public and prosecutorial policy in this area, I think we  can all agree that the current situation does present loved ones with Motor Neuron Diease and similar conditions at the end of their lives, with an emotional, ethical and legal mindfield. Is the Minister confident that these people, at a very difficult time, are getting the advice and support that they need to navigate that?
She was told: I’m not in a position to say where such people seek advice on these matters, but such advice is available. The policy of the CPS with regards to this matter is publicly available.
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Assisted Dying Coalition launches

MDMD is delighted with the launch of a formal coalition of like-minded organisations campaigning in the UK and crown dependencies for a change in the law on assisted dying. The Assisted Dying Coalition (ADC) is a forum that meets regularly and shares information and approaches on right-to-die campaigning.

For many years MDMD has worked closely with Friends At The End, (FATE), most notably in holding joint 6 monthly meetings in London. Our links with Humanists UK on right-to-die campaign issues have deepened considerably over the past 2 years. Since the idea of a coalition between like-minded campaign groups was first mooted, Humanist Society of Scotland and the recently formed End of Life Choices Jersey have joined us.

Each of the member organisations maintains its own identity and particular focus, along geographic and/or religious-inclusion lines, but on matters that we have in common, relating to our assisted dying campaign work we will be working increasingly collaboratively, sharing our expertise and information, and maximising the power of our collective supporter base.

Membership of the ADC is open to campaign organisations and lobby groups who share the same right-to-die campaign goals: for individuals who are terminally ill or facing incurable suffering and who have a clear and settled wish to end their life.

As part of its launch activities the ADC published research which reveals that since the Marris Bill on assisted dying was rejected by the House of Commons in September 2015 more than 1 person per week from the UK has ended their life in Switzerland. The figures also reveal that almost 1,500 UK citizens have a paid membership with an assisted dying organisation in Switzerland. This highlights how desperate many people feel about how the law and medical practice in this country fail to respect their end of life wishes.

Responding to these figures Assisted Dying Coalition Chair Carrie Hynds, (who is also a director of MDMD), said: “It is disgraceful that in the last few years alone, 233 people have been forced to make that agonising journey abroad, far from their family and friends, to have an assisted death. The various legislatures in these isles might want to wait, but it is too late for those who have already faced this injustice.”

“As a Coalition, we will be working to ensure that people have the individual autonomy to make their own decisions about their end of life choices. Several countries including Canada, Luxembourg, and Switzerland all have assisted dying laws in place which give dignity to people in dying. The UK and crown dependencies must follow in the footsteps of these countries while also implementing strong legal safeguards that protect all individuals.”

Phil Cheatle, MDMD’s campaign policy director said: “It is simply not acceptable for doctors to defer the decision on assisted dying to politicians, only for politicians to reject it, at least in part, because “doctors don’t support it”. The ADC will be pressing for a more joined up response. Medical organisations and politicians must work together to respond to the public clamour for more compassionate, dignified end of life options, which include medical assistance to die when there are no acceptable alternatives.”

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‘Five to Midnight’ Before Dementia Takes Over

A BBC story discusses the assisted death of dementia sufferers, in particular the case of Annie Zwijnenberg in the Netherlands. Annie was never in any doubt that she wanted euthanasia, once she had her Alzheimer diagnosis. She delayed as long as she felt she could but she knew that if she waited for too long she would lose the mental capacity to confirm her decision at the time. This would make it much harder for her doctor to help her. In the Netherlands, with an appropriate Advance Decision, euthanasia for someone who has requested it but has subsequently lost mental capacity is legal – though it is controversial.

Dementia is the leading cause of death in England and Wales, with 1 in 8 deaths being caused by dementia, rising to 1 in 4 for women over 80. Many of us would wish to avoid the final stages of dementia where the quality of life is below the level we could accept – or at least, below the level our former-selves, before we lose mental capacity, could accept.

In the UK our options for avoiding end stage dementia are bleak, which is why MDMD campaigns for a change in the law on assisted dying. In Switzerland, those with early stage dementia can have an assisted suicide, but only if they have the mental capacity to make a life ending decision at the time. MDMD supporter Alex Pandolfo is choosing this route and has talked publicly about the difficulties of deciding when to make his final journey there.

Phil Cheatle, MDMD’s Director of Campaign Policy, recently asked Baroness Finlay, a professor of palliative medicine at Cardiff University and a strong opponent of a change in the assisted suicide law, how he could avoid late stage dementia. Her answer, sourcing drugs from the internet, was both astonishing and illegal. MDMD regard this as unsafe and uncaring. There has to be a more compassionate solution instead of people taking their own lives, often too soon, and often in a risky, unpleasant, traumatic way.

MDMD agrees with the Swiss approach that those seeking an assisted death need to have mental capacity at the time of their assisted death. This is a strong safeguard. It also makes a difficult situation easier for those who would otherwise have to decide when to give euthanasia to another person – a responsibility that few would wish to accept.

The BBC story highlights another issue of assisted suicide – an oral method can take a long time. In Annie’s case her doctors eventually decided to give her a lethal injection, which is legal in the Netherlands. A similar issue was illustrated in a recent documentary by Louis Theroux, but in this case, in California, a lethal injection would have been illegal. A better alternative method for assisted suicide seems to be that used at Lifecircle in Switzerland by Dr. Erika Preisig. Whenever possible she uses an intravenous method where the patient controls a valve to start the flow of the medication which will end their life. (It is required by Swiss law that the patient self-administers the lethal medication.) Dr Preisig told MDMD that using this method the time taken to die is “always the same, 30 seconds to fall asleep, and 4 minutes to die. No coughing, no vomiting, no pain at all”.

MDMD campaigns for a safe, peaceful method like this to be available in the UK for those who (amongst others) are dying of dementia and who choose an assisted death as their form of a good death. Currently this choice is denied to people. People like Joan Cheatle, who feel that due to incurable medical conditions, (and typically in old age), their life is complete and they just want to go to sleep peacefully and not wake up. Instead, despite the best care available, they have to suffer for months or years longer than they wish, until they are dependent on life sustaining medication which they can refuse. In comparison, Annie Zwijnenberg in the Netherlands was lucky. She had her wish of ending her life ‘five before midnight’. Something that Joan Cheatle, in the UK, asked for, but was denied.

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MDMD Campaign Policy Director responds Dominic Lawson

My Death, My Decision’s Campaign Policy Director, Phil Cheatle, responds to the Daily Mail’s Dominic Lawson. 

Today, the Daily Mail published an article by Dominic Lawson, criticising the Royal College of Physicians (RCP) decision to poll their members on assisted dying. His article misses some important points.

One example, is Mr Lawson’s insistence that: “assisted dying already exists in this country: it is called palliative care and takes place in hospices across the land.” Another is his claim, that: “the issue is whether doctors should be required to perform [assisted deaths] if any of their patients request it”, or that the very notion of assisted dying requires a doctor to breach their Hippocratic Oath.

Palliative care is undoubtedly an important choice for anyone at the end of life, and My Death, My Decision firmly supports its work. However, whilst MDMD recognises the importance of its benefits, we also believe it is important to recognise its limitations. Palliative medicine is ill equipped to help those who fear a loss of dignity, or loss of autonomy. Not all pain can be palliated, and worse, people are unable to say “enough is enough I just want help to die peacefully”. More significantly, it offers very limited help those who suffer from degenerative neurological conditions such as dementia (which accounts for one in eight deaths in the UK).

On the issue of “requiring” a doctor to directly participate in someone’s assisted death, MDMD firmly supports the notion of conscientious objection. Although 45% of UK doctors already believe that a form of assisted death occurs in the UK, and 55% of UK doctors already agree that the law on assisted dying should change, MDMD recognises that an important minority of doctors are opposed. As with all questions of conscience, My Death, My Decision would never “require” a doctor to assist in someone’s wish to die, and would respect their right not to participate. Similarly, when Mr Lawson suggested that the very notion of assisted dying would “breach [a doctor’s] Hippocratic Oath”, it appears that he overlooked the modern articulation of the medical profession’s practice oath which now reads: “I will respect the autonomy and dignity of my patient”. A striking statement, considering that it is unclear how refusing the peaceful death requested by a patient after careful consideration of the options, when their future quality of life for them lacks the level of dignity they would wish, “respects the autonomy and dignity” of the patient.

Amongst Mr Lawson’s other objections to changing the law on assisted dying, is a concern that many patients “can come under subtle (or not so subtle) pressures from relatives who stand to benefit from such ‘assisted suicide’”. This is an important concern, and it is right for Mr Lawson to raise it. However, as important as this concern is, there are three significant considerations to be drawn out from the issue of coercion.

Firstly, it is likely that a much larger percentage of dying people already experience a form of coercion, through the strong social pressure to “keep on fighting”. Many individuals who suffer unbearably want to die peacefully, but often feel forced to accept medical treatment to stay alive.

Secondly, as Mr Lawson himself notes, there is already an absolute right, without any recourse to scrutiny, for someone to refuse life-sustaining medical treatment. Therefore, if it were true that unscrupulous relatives are motivated by a desire to pressure their elderly relatives to end their lives, it is unclear why there is no evidence of individuals being pressured into ending their life by removing treatment. Indeed, in most cases, grieving relatives are likely to pressure their loved one into staying alive longer, as opposed to pressuring them into ending their lives.

Finally, medical professionals are well versed in identifying coercion and ensuring that individuals can make fully informed decisions. However, MDMD believes that it is important that we continue to develop and improve good practice to detect and avoid pressure and coercion relating to all end-of-life planning decisions and choices – accepting or refusing treatment, making advance decisions and statements of wishes, as well as (when legalised) requesting a medically assisted death.

If you would like to add your own comments to Mr Lawson’s article, it can be found here.

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“Euthanasia in the Netherlands”. Look again, when someone says death will be available on demand.

My Death, My Decision’s Campaigns and Communication Manager, Keiron McCabe, responds to the latest Guardian long-read “Death on demand: has euthanasia gone too far?”

Christopher Bellaigue raises an important question for those of us who advocate for assisted dying reform. In a society which permits euthanasia, what are the acceptable limits to autonomy? As the Netherlands has demonstrated, this question yields no easy answers, and its answer will differ depending upon one’s moral, social and religious background. Yet whilst Bellaigue is right to have raised such an important question, he is wrong to have drawn such a quick conclusion.

Bellaigue presents a bleak picture of the Netherlands. Drawing upon a declining rate of euthanasia, he connects the “long-term consequences” of Euthanasia, and a lack of resolve and “willingness” from doctors, to suggest the country now “doubts” its decision to legalise assistance to die. Paradoxically, he also writes about a rising rate of Euthanasia, and that “in 2017, some 1,900 Dutch people killed themselves”. The implication being that euthanasia “cheapen[s] life itself”, and encourages higher levels of suicide. Leaving aside these paradoxes, these connections are misleading.  Since 2004, there has been a 249% increase in the number of notifying physicians, involved in Euthanasia and the Dutch suicide rate remains at about the same level as it was before the law changed.

Bellaigue also suggests that in 2002 the Netherlands should have “stipulate[d] that patients must be competent at the time” they make a decision to end their life. The importance of this requirement is abundantly clear in the context of Dementia, as Bellaigue raises, because it is only in the early-stages of Dementia that someone can retain the capacity to make an autonomous decision. Yet, it is misleading to suggest that competence is unnecessary, at the time of death, in the Netherlands. Whilst the requirement of “competence” may not be clear upon first inspection, since the 2002 law does not explicitly use the term, the 2018 Dutch Euthanasia code is clear that mental competence is encapsulated within the legal requirement for a patient to make a “voluntary and well-considered request”.

At no point is Bellaigue’s warning clearer, than his concern that euthanasia is leading to “death on demand”, a conception which incidentally had been discussed since 2010 but never realised. Few advocates of a right to die, condone an entirely unencumbered entitlement. Most would argue, as I would, that alongside any right to a die, there must be a stringent and robust set of safeguards to protect those who are most vulnerable. Determining the limits of that right is a difficult task. For some, assistance may turn upon the presence of a terminal illness; whilst for others, the permission of a loved one may be essential.

I believe that the answer lies in empowering mentally competent adults, who suffer from incurable health problems, with the freedom to determine the course of their own lives. It is our ability to act autonomously which gives life meaning. Both in the sense of taking responsibility for our actions, and in owning our individual destinies. When an incurable illness robs someone of that ability, and their quality of life falls permanently below a level that they find can acceptable, it is wrong to force them to live against their will.

Euthanasia is a complex and difficult question, which demands a sensitive and careful discussion. It is incumbent upon us all to make sure we hold ourselves to that standard.

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Pulling “the plug on your life support … because of a message you left on facebook” – Fact or Fiction?

MDMD’s Campaigns and Communication Manager, Keiron McCabe, breaks down the new Clinically-Assisted Hydration and Nutrition Guidance from the British Medical Association

Recently, writing in the Daily Mail, Dr Max Pemberton criticised the new British Medical Association’s (BMA) “Clinically-assisted nutrition and hydration (CANH) Guidance”, for allowing “one Facebook post [to] be enough to bring about your death”. The news follows after Care not Killing, an organisation opposed to changing the law on assisted dying, similarly wrote to the BMA challenging the new guidelines.

Clinically-assisted nutrition and hydration (CAHN), is a medical treatment for someone who has difficulty swallowing or is unable to gain sufficient water orally. It normally involves inserting a tube in the vein and using it to provide a liquid formula feed. It does not include spoon feeding or any other way of providing food and liquid by the mouth.

In his article, Dr Pemberton stated that he had “no ideological objection to treatment being withdrawn from seriously ill patients … [because] the job of a doctor is to alleviate suffering, not extend life unquestionably”. Indeed he even went as far to say that “there are certain situations – suffering chronic pain that cannot be managed and with no hope of reprieve, or being completely paralysed, for example, – when [he] would not want to live and indeed would consider it cruel of others to proactively extend [his] life in any way”.

However, reflecting on the new BMA guidance, Dr Pemberton called it “terrifying”, that “relatives of patients who are so ill [that] they cannot make a decision for themselves and who have no prospect of recovery, [are being advised to] trawl through … Twitter, Facebook and Instagram posts or emails for references to death, to help reach decision on whether to withdraw treatment or switch off life support”.

He argued that as a society, we are all prone to hyperbole and exaggeration online, and that this new guidance risked medics taking a comment on social media out of context and failing to appreciate our genuine wishes. Instead, he recommended that for those who genuinely wish for their life not to be artificially extended, to make an Advanced Decision or appoint someone with a Lasting Power of Attorney.

Dr Pemberton suggested this new guidance was especially troubling, because it follows a trend in which more “complex ethical decisions are now essentially in the hands of medics”, and risks becoming “Euthanasia by Stealth”. In particular Dr Pemberton highlighted 3 instances of this trend. First, a test case in which “a 74-year-old woman in a coma could have her feeding tubes removed” because a judge considered an email to her daughter in which she said ‘I am still haunted by how he ended up… Get the pillow ready if I get that way! Love Mum.’ not a throwaway remark. Secondly, a judgement from the Supreme Court in 2018 which ruled doctors are no longer required to seek the approval of a judge when removing CAHN. Thirdly, a “leaked” “draft guidance” from the BMA in 2018 which indicated that “doctors should be able to end the lives not only of patients who are in a minimally conscious vegetative state, but also patients with dementia or other degenerative diseases if they can’t feed themselves”.

My Death, My Decision advocates for the law on assisted dying to change, only for those who are mentally competent adults, with incurable health problems that result in their perceived quality of life falling permanently below the level they are able to accept, providing this is their own persistent request. Consequently, the new guidance from the BMA does not impact upon MDMD’s objective. However, we agree with Dr Pemberton and would encourage anyone, would rationally prefer not to continue life extending medical interventions, if they lost capacity, to make an Advance Decision or Lasting Power of Attorney appointment.

This being said, we note Dr Pemberton’s discussion with interest and believe it merits a fuller investigation.

Can a tweet really end my life? Probably not.

The law on decisions about withdrawing CAHN for those without mental capacity is clear. In the absence of any advanced planning, the 2005 Mental Capacity Act and recent 2018 Supreme Court judgement state, any act/ decision for a patient who lacks mental capacity must be made in accordance with their “best interests”.

Hence the key question for any medical professional is whether it is in a patient’s “best interest” to remove CAHN. Moreover, it is a long established legal principle, that someone’s best interests may not in all cases be the extension of life. Indeed, MDMD notes with interest that Dr Pemberton himself identified situations in which he would prefer for his life not to be extended.

Admittedly, the notion of “best interests” is a somewhat elusive concept. Hence, to help doctors, the Mental Capacity Act sets out a number of factors which are designed to guide this assessment.

For example:

  1. Someone must consider whether it is likely the person has some capacity in relation to the matter
  2. If the person is likely to have some capacity, they must be encouraged to participate as fully as possible in any decision affecting them
  3. When the determination reflects life-sustaining treatment, someone must not be motivated by a desire to bring about a death
  4. Someone must ascertain as far as reasonably possible, the person’s past and present wishes and feelings (in particular any written statement made at the time when they had capacity); the belief and values that would be likely to influence the decision; and other factors would the person would be likely to consider if able.

According to the BMA’s new guidance, “decision-makers must start from the strong presumption that it is in a patient’s best interests to receive life-sustaining treatment, but that presumption can be rebutted if there is clear evidence that a patient would not want CAHN provided in the circumstances that have arisen”.

Two significant developments are that the BMA clearly say doctors must consider the notion of best interests from the patient’s point of view, and that doctors are ultimately responsible for this assessment. This is significant, because it clearly states that doctors cannot be motivated by their own preferences, but instead solely by the interests of their particular patient. Additionally, it recognises that the notion of “best interest” is subjective and therefore what may be the “best” for one person, may not necessarily be as good for someone else. It is also significant because it clearly states “decisions [about best interests] must be made by the clinical team on the patient’s behalf”. Thus, whilst a family member or friend might be able to advise a practitioner on what their patient’s preference might have been, they are not allowed to make the decision for the patient themselves.

So where does “social media” fall into the mix? As the Mental Capacity Act and new BMA guidance says, even if family members cannot make a decision about best interests, they can help a doctor “ascertain any views, wishes, values or beliefs of the patient”.  For example, they could say that their loved one had previously indicated that they did not want life extending treatment.

However, whilst family members are predominately motivated out of entirely compassionate reasons, the BMA recognises that a minority might have ulterior motives. Hence they encourage as best practice, “seeking views from a number of different people and seeking examples or evidence to back up statements”. In effect a comment on social media may be such an example or evidence.

However, it is important to stress that whilst social media could be an example, it has always been the case that doctors should look to written statements to ascertain their patients views. Further, social media itself is only listed as one example of relevant information written down in the BMA’s guidance. It also suggests something in a diary, a letter or email could be an “example” of something written down, which indicates a preference.

It is also important to stress that in addition to information written down, doctors are advised in the new guidance that they should seek to learn

  1. The nature and length of the relationship with the individual
  2. A description of what the patient was like before becoming ill – work, hobbies, likes, dislikes, what is important to them etc
  3. Any examples of things the patient said or did that might indicate the view that they are likely to have of their current situation
  4. Any religious, spiritual or ethical beliefs the person held and how these might impact on the decision
  5. Aspects of the patients personality that might be relevant to the decision
  6. Whether they believe the patient would want CAHN provided/ continued and their rationale for that assessment

Hence, Dr Pemberton’s claim that we are all one tweet away from an end of life decision, is grossly exaggerated. Doctors are compassionate and caring professionals, who with very few exceptions only ever want the best for their patient, and would obviously exercise common sense when assessing the importance of a comment on social media.

Moreover, even if the stark situation Dr Pemberton’s described did exist, he overlooks the litany of safeguards the BMA recommends for doctors to follow. For example:

  1. A Doctor should seek a second clinical opinion where it is proposed to stop or CANH
  2. “Where there is uncertainty or disagreement about whether CAHN is in the patient’s best interests … legal advice should be sought and an application to the Court of Protection should be made”.

More Detailed Analysis

The test case, Dr Pemberton referenced was Salford Royal NHS Foundation Trust and Mrs P. Although, it was reported in the Daily Mail, Mrs P had her CANH withdrawn because of an email, this is somewhat misleading. At paragraph 39 of the judgement, Mr Justice Hayden listed a number of factors which indicated it was in Mrs P’s best interests to have CANH removed:

  1. The daughter of Mrs P had informed the medical staff early on that her mother would not have wanted the indignity of her present situation
  2. The daughter had been so confident that her mother had expressed this view that she was able to go through years of emails before finding the particular claim in question
  3. Mrs P’s neighbour informed the court that they had both discussed how they would not like to “linger with [an] illness”
  4. The Official Solicitor acknowledged that there was clear and compelling evidence of Mrs P’s wishes.

Whilst it is true that the email had featured prominently in the case, Mr Justice Hayden cautioned that it could simply “be regarded as recording one of those casual throw away remarks that we all make from time to time [making it] ultimately meaningless”. It was only because of the “context” of the email, that he considered it significant.

Turning to the 2018 Supreme Court case of NHS Trust and Others v Y, the Supreme Court clarified that there had never been a law, only an understanding of good practice, that doctors should apply to a court before CAHN can be removed. Hence in cases where families and practitioners in agreement, it may not be necessary to seek judicial permission, if the delay would cause considerable distress to families. However, the court stressed that if it transpires that there is a difference of medical opinion, or lack of agreement from a person with a patient’s welfare, regarding the “best interests” of the patient, a court application “can and should be made”. Hence, the case cannot have  remove a safeguard, since it did not exist in the first place, but merely clarify when additional support should be sought. (Advice similarly reflected in the BMA’s new guidance).

Finally, the leaked draft claim originates from a story featured in the Daily Mail who said that the draft document said:

“Those patients who have a recognised degenerative condition – such as advanced dementia, Parkinson’s or Huntington’s disease – that is likely to result in the patient being unable to take sufficient nutrition orally … Due to the degenerative nature of their condition, these patients are on an expected downward trajectory and will inevitably die, usually as a result of their underlying condition, although perhaps not imminently and could, potentially, go on living for many years.”

A statement which still appears in the final edition of the BMA’s final guidance.

Reflecting on the BMA’s judgement, MDMD’s associate coordinator Dr Colin Brewer said: “It is quite understandable that many people are concerned about progressive neurological conditions such as dementia. Dementia is now the leading cause of death in the UK. However, it would be wrong to think that those suffering from Dementia, automatically lack capacity. Those at the early stage of their condition such as MDMD’s Alex Pandolfo, still have capacity and therefore would not be affected by this guidance.”

Interestingly, the BMA’s guidance stressed that when someone is given CANH it is not normally as a result of their degenerative condition advancing. Instead, it is normally the case that someone is given CANH because of a concurrent, but entirely unrelated, additional condition, which means someone cannot take enough nutrition orally. Reflecting this, the BMA’s guidance say that where someone with a degenerative condition does receive CANH for a different, but concurrent, illness it is advisable for “extensive best interest assessments [to take place, including] best interest meetings”.

My Death, My Decision firmly believes that those suffering from dementia deserve the same level of respect and compassion as anyone else. Thus even if it were the case, which it is not, that “dementia” was the underlying reason why CANH existed in the first place, we believe that if it is in someone’s best interests not to continue treatment, they should not be discriminated against. However, in saying this we are encouraged by the BMA’s recognition of the importance of safeguards for neurological degenerative conditions including advising doctors to seek “a second opinion from a senior independent clinician”.

Therefore will they “pull the plug on your life support … because of a message you left on facebook”? Probably not. But the overriding advice really should be for people to write an advance decision. This clarifies for all concerned what your wishes are. It can also provide a legally binding refusal of CANH under conditions which the person specifies. MDMD would like to see encouragement to write Advance Decisions as part of routine NHS healthcare checks and end of life care and planning discussions.

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Parliament hears from top Canadian Doctors, on the experiences of assisted dying abroad

On Tuesday 11th December, the All-Party Parliamentary Group (APPG) on End of Life Choices, met to hear from Dr Sandy Buchman and Professor Sir John Temple, on the role of doctors within a public discourse on assisted dying.

Dr Sandy Buchman, the President-elect of Canada’s Medical Association, who was joined by his Vice-President Dr Jeff Blackmer, discussed the role doctors had played in shaping Canada’s decision to legalise assisted dying in 2016. Professor Sir John Temple, the previous President of the British Medical Association (BMA), spoke about his concerns regarding the representation of doctors views.

“I see assisted dying as one more tool in the service of palliative care’s core mission of alleviating suffering” – Dr Sandy Buchman

At the start of his talk, Dr Buchman explained that “medical-aid-in-dying” (MAID) began in Canada, in response to two developments. First, the Canadian Supreme Court unanimously struck down a federal prohibition of assisted dying in 2015. Second, the Canadian Parliament passed an assisted dying law in 2016, which permitted MAID for anyone who was: (i) 18 years or older, (ii) suffering from a grievous and irremediable condition, (iii) enduring psychological or physical suffering which was intolerable, (iv) was capable of giving informed consent and (v) had a reasonably foreseeable natural death.  

Turning to the role that doctors had played during these developments, Dr Buchman explained that throughout Canada’s public discourse, the Canadian Medical Association (CMA) had chosen to play an active role in steering discussions. He argued that whilst it had been the CMA’s longstanding position, to support the right of every physician to follow their conscience, he believed that to uphold this commitment it was necessary to support both the right of  “contentious participation” and “conscientious objection”. Thus, in 2015 when the CMA intervened in the Carter Case, they did so only to provide expert information from a medical perspective and without taking any particular position. Equally, during the 2016 legislative process, the CMA only intervened to provide objective information, and allow Parliament to engage in an informed and full debate.

Dr Blackmer went on to explain that the CMA has purposefully chosen not to approach assisted dying from a yes/no perspective, but instead to broach a wider debate about the role doctors should play in end of life care. Consequently, he explained that it had been essential to the CMA, to consult widely with the public, physicians and medical stakeholders, and understand their concerns before adopting a neutral position.

Indeed, in a powerful moment, Dr Blackmer warned other medics that “if [they] chose not to become involved [in the debate], all that [would] happen is that a conversation [would continue], without them, and they would lose an opportunity to shape the debate”. Both doctors closed their talk, by stressing that they believed it was the responsibility of doctors, to engage within a public debate and provide unbiased information so as to enable a national conversation to move forward.

“Medical organisations must engage with the debate with evidence and honesty and adopt a position that respects patitents’ and professionals’ choices.” – Professor Sir John Temple

Professor Temple then followed Dr Buchman and Dr Blackmer, by focusing upon an emerging divide between the views of medical professionals, and the organisations representing them. At the core of the debate, Professor Temple suggested that a fault-line had emerged within modern medical practice between the profession’s ability to extend life, and its inability to alleviate suffering.

My Death, My Decision noted with particular interest Professor Temple’s discussion of the BMA’s official opposition to assisted dying. Having highlighted that 80% of the public now support changing the law to permit assisted dying, and that the experience of Canada demonstrates that assisted dying laws are not abuse, nor likely to affect a large percentage of the population, Professor Temple suggested that the BMA’s continuing opposition was “troubling”. In particular, he stressed that whilst the BMA has a membership 150,000, only 197 doctors were responsible for its official policy of opposition. Setting aside his democratic concerns, Professor Temple condemned the BMA for failing to reflect the views of doctors, as evident from a recent poll in the British Medical Journal (the BMA’s independent paper), which found 55% of doctors supported a change in the law.  

Turning to the opinions of the wider medical community, Professor Temple suggested that those such as the Royal Nursing Colleges, who have followed a policy of neutrality since 2009, were ahead of doctor’s associations and it was now time for a “fresh meaningful and informed debate” to begin.

Professor Temple closed his talk by highlighting that the BMA, General Medical Council and Royal College of Physicians’ had proven, when offering to assist Guernsey during its debate on changing the law, that the medical profession was capable of approaching the debate constructively. He argued that whilst many doctors may fundamentally disagree with the notion of assisted dying, and that this conscientious objection must be respected, the modern articulation of the medical profession’s practice oath now reads: “I will respect the autonomy and dignity of my patient”. Consequently, in an age when the medical profession is increasingly moving away from paternalism, it is imperative for:

(i) Medical Associations to properly ascertain the beliefs of their members.

(ii) Medical Associations to examine the examples of assisted dying abroad, most obviously the situation in Canada.

(iii) Medical Associations to listen and engage with the stories of those affected by the UK’s prohibition of assisted dying and their families.

Following the two talks, the floor was then opened to a question & answer session. Notable contributions included a question from Paul Blomfield MP, who asked about the degree of safeguards in Canada and Lord Lipsey of Tooting Bec, who raised concerns about the popular understanding of opinion polling on the right to die.

Two questions of particular interest to MDMD, came from Catherine West MP, who asked about potential assurances to those living with a long-term disability, and Lord Warner of Brockley, who asked how the CMA had overcome a rigid opposition from the medical community.

In responding to the first question, Dr Buchman commented that he would not presume to tell the UK how to address the challenge of protecting vulnerable groups, such as the disabled. However, he suggested that were the UK to follow Canada’s example, legislators would be wise to continue considering the issues of assisted dying, as Canada has done, even after the passage of legislation. Dr Blackmer, a specialist in disability and palliative care, made the astute observation that whilst he can sympathise with the dismay of many disabled groups, evidence from Canada indicates that those who are most vulnerable tend to be excluded from accessing end of life care, rather than pressured into it. Consequently, he suggested that those who are most vulnerable in society, are often most frightened by the prospect of having no choice at all.

Regarding the opposition of the medical community,  Dr Buchman said that he believed it was the open approach of the CMA which allowed him, and ultimately those who opposed assisted dying as well, to feel confident in their positions and to create a culture of mutual respect.

As a palliative care specialist, Dr Buchman acknowledged that his personal journey towards accepting assisted dying had spanned over two years. He stressed, that it was his belief  high quality palliative care was key to good end of life planning, but that assisted dying did not threaten the provision of such care, but somewhat perversely strengthened the case for ensuring that palliative care was accessible and available. Closing on a personal example, Dr Buchman explained that whilst he was initially hesitant about the prospect of assisted dying, he ultimately decided that helping patients who wanted to decide when and how they died, was an extension of what he had been doing already: helping to relieve suffering. Dr Buchman explained that when he first participated in an assisted death, for a professor of medicine suffering from Lewy body dementia, he had been struck by the sense of “illumination”, as though “a weight had been lifted”, when he agreed to discuss the prospect of an assisted death, let alone participate. He explained that whereas before his patient had explained he felt hopeless, especially after exhausting the options of traditional palliative care, the option of an assisted death enabled the patient’s mood to lift, and allowed him the dignity to die from a peaceful death surrounded by those he loved.  

Subsequent to their meeting on Tuesday, Dr Buchman and Dr Blackmer also attended a meeting at the Scottish parliament where they told MSPs “I’ve learned from clinical experience that sometimes the only way to alleviate a patient’s suffering is to allow them to choose an assisted death. It’s not an easy decision to become a provider of assistance in dying. It took the better part of more than two years to sort through my deepest emotions. Every case is difficult – every single case is a challenge. I never see this as an easy decision. It’s as difficult as you can make in medicine. No-one I know takes it lightly. But I look to medicine to alleviate suffering. Ultimately I have decided that helping eligible patients who wanted choice over the manner and timing of their death was an intention of what I was doing all along – that is relieving suffering. This is a choice that I have made personally, this is a matter of conscience which should unequivocally be respected.”

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