Supreme Court (UK) right to reject "dangerous" attempt to legalise assisted suicide

Press Release issued on behalf of Care Not Killing
November 27, 2018

The Supreme Court is right to reject this dangerous attempt to legalise assisted suicide after Parliament has repeatedly rejected changing the law, says Care Not Killing.

This latest case brought by lawyers acting for Noel Conway was seeking permission for a full appeal. This ruling by Lady Hale, Lord Kerr and Lord Reed upholds the previous decisions by Parliament and judges who held that the current law protects vulnerable and disabled people from being pressured into ending their lives.

The judges, rejected the arguments of Mr Conway's legal team who claimed that the current blanket ban on assisted suicide under the Suicide Act is incompatible with his right to private life.

It upholds the decision by the Court of Appeal, which rejected the same arguments in June this year. In that ruling the judges concluded that the current blanket ban on assisted suicide achieves a fair balance between the interests of the wider community and the interests of people in the position of Mr Conway. They cited the need to protect vulnerable people, the importance of the sanctity of life and the need to protect the doctor patient relationship.

While in 2017, three experienced High Court judges concluded:

'It is legitimate in this area for the legislature to seek to lay down clear and defensible standards in order to provide guidance for society, to avoid distressing and difficult disputes at the end of life and to avoid creating a slippery slope leading to incremental expansion over time of the categories of people to whom similar assistance for suicide might have to [be] provided... we find that section 2 (right to life) is compatible with the Article 8 rights (private and family life) of Mr Conway. We dismiss his application for a declaration of incompatibility.'

Dr Peter Saunders

Dr Peter Saunders, Campaign Director of Care Not Killing, welcomed the ruling saying:

'The judges, parliamentarians, doctors and disability rights groups are all in agreement - that the safest law is the one we currently have. It carefully balances an individual's rights with the need to protect vulnerable people, who could feel pressured into ending their lives. We have seen in the US States of Oregon and Washington that the fear of becoming a financial, or care burden is cited by more than half of those choosing to end their lives. 

'And it is not just in US where we have seen disturbing developments, once safeguards have been removed. In Holland and Belgium, a law introduced to alleviate the suffering of mentally competent adults is routinely used on non-mentally competent adults and even children. This why in this area the blanket ban is the right approach and we welcome the Supreme Court's decision to reject this dangerous change.'

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Previous decisions by the UK Parliament and Judges to reject assisted suicide should be upheld by the Supreme Court

Press Release issued on behalf of Care Not Killing

RELEASE DATE: Wednesday 20th June 2018

The previous decisions by Parliament and judges in the High Court and Court of Appeal to reject attempts to legalise assisted suicide should be upheld by the Supreme Court, says Care Not Killing

This latest attempt, brought by Noel Conway, is seeking permission to appeal against previous rulings in UK’s top court.

Mr Conway’s legal team is expected to argue that the current blanket ban on assisted suicide under the Suicide Act is incompatible with his human rights. They will ask a panel of three Supreme Court Justices to grant them permission to appeal.

However, this exact same argument has been repeatedly rejected by the Courts, including the Court of Appeal as recently as June this year. In the most recent ruling the judges concluded that the current blanket ban on assisted suicide achieves a fair balance between the interests of the wider community and the interests of people in the position of Mr Conway.

While last year, three experienced High Court judges dismissed similar arguments, saying:

“It is legitimate in this area for the legislature to seek to lay down clear and defensible standards in order to provide guidance for society, to avoid distressing and difficult disputes at the end of life and to avoid creating a slippery slope leading to incremental expansion over time of the categories of people to whom similar assistance for suicide might have to [be] provided... we find that section 2 (right to life) is compatible with the Article 8 rights (private and family life) of Mr Conway. We dismiss his application for a declaration of incompatibility.”

The judges went on to say that the objectives of the current law are not limited to the protection of the weak and vulnerable, but also include respect for the sanctity of life and the promotion of trust between patient and doctor in the care relationship.

Dr Peter Saunders, Campaign Director of Care Not Killing commented: 

“The view of these judges is one shared by Parliamentarians up and down the country, who have rejected any change to the law on assisted suicide since 2003 – on more than 10 separate occasions. This includes the historic vote in the House of Commons in 2015, which rejected changing the law by the huge majority of 330 to 118.

“Members of Parliament, just like every major doctors’ group and disability rights groups expressed concerns about public safety, the failure of safeguards in the small minority of countries that have assisted suicide or euthanasia and the discriminatory message removing universal protections, from the sick, elderly and dying would send.

“We hope the Supreme Court will recognise that the safest law is the one we have - a complete ban on assisted suicide and euthanasia. Importantly our laws treat everyone the same regardless of their age or disability, deterring the exploitation, abuse and coercion of vulnerable people. As we have seen in the US States of Oregon and Washington fear of becoming a financial, or care burden is cited by more than half of those choosing to end their lives.”

Dr Saunders concluded: 

“Worryingly it is not just in US where we have seen disturbing developments, once safeguards have been removed. In Holland and Belgium, a law introduced to alleviative the suffering of mentally competent adults is routinely used on non-mentally competent adults and even children. This why in this area the blanket ban is the right approach and we hope the Supreme Court will reaffirm this.”

For media inquiries, please contact Alistair Thompson on 07970 162225.

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Notes for Editors

Care Not Killing is a UK-based alliance bringing together around 50 organisations - human rights and disability rights organisations, health care and palliative care groups, faith-based organisations groups - and thousands of concerned individuals.

We have three key aims:

• to promote more and better palliative care;

• to ensure that existing laws against euthanasia and assisted suicide are not weakened or repealed during the lifetime of the current Parliament;

• to inform public opinion further against any weakening of the law.

The case for assisted suicide is inherently flawed.

This article was published by the Economist Magazine on August 28, 2018.

Kevin Yuill is author of the book: Assisted Suicide - The Liberal, Humanist Case Against Legalization.

Professor Kevin Yuill

The case for assisted suicide seems to consist of terrible stories of people dying protracted, painful deaths and prevented by a cruel law from gaining the relief they seek. But this is not always accurate. As the official reports in Oregon and Washington show, pain is not in the top five reasons why people opt for assisted deaths. It is fear that dominates people’s concerns: of loss of autonomy, loss of enjoyment of life’s activities and loss of dignity. I believe these fears are curable, even if the underlying disease that robs people of such functions is not.

Kevin Yuill: Assisted suicide and the false concept of autonomy.

Lord Falconer characterised the existing law as “incoherent and hypocritical”. But that description seems more apposite for many of the arguments for changing the law. There is an Orwellian self-deception in the idea that “assisted dying” is a safe, healthy way of dying compared to “violent” suicide. But the violence inherent in suicide comes not from the method used, but from the extinction of life from a body.

Then there is the unresolvable problem of where to draw the line. The orthodox argument, ably expressed by Lord Falconer, has it that we should draw the line at six months. But this doesn’t add up. If we argue that the relief of suffering is the most important issue, then six months to live is utterly random; people who have more time clearly suffer. As Lord Neuberger, the president of Britain’s Supreme Court between 2012 and 2017, said in relation to Tony Nicklinson, a man with locked-in syndrome who campaigned unsuccessfully for the right to die: “There seems to me to be more justification in assisting people to die if they have the prospect of living many years a life that they regarded as valueless, miserable and often painful, than if they have only a few months to live.”

When should someone be allowed to help someone else to die? The moral essence of the question concerns our attitude towards suicide. Is it okay in some instances, when someone is really suffering? When they have certain horrific diseases? When they are over 70, as a bill proposed by the Dutch government would have it? Or should we approve it whenever someone says they are suffering unbearably?

My case is not against suicide per se. Though most suicides are tragedies, others, such as that of Captain Oates, who sacrificed himself for the good of his comrades on the ill-fated Scott expedition to the South Pole in 1912, are beautiful acts, the epitome of selflessness, duty to one’s fellows and courage.

Our attitude to suicide is necessarily ambivalent. All free, competent adults should be free to make the decision whether or not to live. I disagree with my good friend Peter Saunders when he says “we recognise that personal autonomy is not absolute.” In relation to the decision to commit suicide, it must be (and with assisted suicide, it is not).

Anyone determined enough to do so will likely take their own life, regardless of laws. I am on record as supporting the removal of what I see as the patronising prevention of competent adults getting their hands on deadly drugs. It is the assistance—the complicity of the community in the death of a human being—that is the problem.

Kevin Yuill: Legalizing assisted suicide is dangerous. Just look at Canada.

Kevin Yuill lectures in history at the University of Sunderland, in the UK, and is the author of Assisted Suicide: The Liberal, Humanist Case Against Legalisation

Assisted dying is simply another form of euthanasia.

The Economist, a Magazine that promotes a pro-euthanasia / assisted suicide position recently published a series of articles supporting and opposing assisted dying.

On August 23, 2018, the Economist published the following article by Dr Peter Saunders, the campaign director for the Care Not Killing Alliance UK.

Dr Peter Saunders

By Dr Peter Saunders.

“ASSISTED dying” is a euphemism. It has no meaning in law but it means supplying lethal drugs to people who are terminally ill with the purpose of helping them to commit suicide.

This is opposed in Britain by the British Medical Association, the Association for Palliative Medicine, the British Geriatrics Society and virtually every Royal Medical College.

It is also contrary to every historic code of medical ethics including the Hippocratic oath, the Declaration of Geneva, the International Code of Medical Ethics and the World Medical Association’s Statement of Marbella.

The line between assisted suicide and euthanasia is very thin. If a doctor places lethal drugs in a person’s hands it is assisted suicide, but on his tongue it is euthanasia. If the doctor sets up a lethal syringe-driver and pushes it himself it is euthanasia, but if the patient applies pressure or flicks the switch it is assisted suicide.

In one in seven cases of assisted suicide there are problems with “completion” leaving the doctor to step in to finish the job with a lethal injection, which is why legalising one inevitably legalises the other. There will also inevitably be those who claim that they are being discriminated against because they lack the capacity, even with assistance, to kill themselves, and so need someone to do it for them. Therefore, any law allowing assisted suicide only (and not euthanasia) would immediately be open to challenge under equality laws.

The reality is that assisted dying is just another form of euthanasia.

In Britain we have had myriad assisted-dying bills in various parliaments over the last 15 years. Each one has failed to become law due to legislators’ scepticism about so-called safeguards, and concerns about how these laws might be abused by those who have something to gain financially or emotionally from another person’s death. The three proposed entry criteria of “terminally ill”, “adult” and “mentally competent” have also proved malleable and open to interpretation.

Doctors are notoriously unreliable in estimating lifespans. As a result the definition of “adult” is easily open to extension to 12- to 14-year olds or younger, as seen in Belgium and the Netherlands, whose experience also shows how people who lack mental competence, for example with dementia, quickly get drawn in. Assessing mental competence is a specialised skill that not all doctors have, and depression, which increases suicidal thoughts, can be clouding a patient’s judgement.

In countries that have legalised any form of assisted dying, such as the Netherlands and Switzerland, we have seen incremental extension: an increase in total number of deaths and a broadening of categories of people to be included.

Legalising assisted suicide and/or euthanasia is particularly dangerous because any law allowing either or both will place pressure on vulnerable people to end their lives out of fear of being a burden upon relatives, carers or a state that is short of resources. Especially vulnerable are those who are elderly, disabled, sick or mentally ill. The evidence from other jurisdictions demonstrates that the so-called “right to die” may subtly become the “duty to die”. Feelings of being a burden were cited in 55% of Oregon and 56% of Washington assisted-suicide requests in 2017.

This is especially the case when families and health budgets are under financial pressure. Elder abuse and neglect by families, carers and institutions are real and dangerous and this is why strong laws are necessary.

All major disability-rights groups in Britain oppose any change in the law, believing it will lead to increased prejudice towards them and increased pressure on them to end their lives.

The safest law is like Britain’s current one, which places a blanket prohibition on all assisted suicide and euthanasia. This deters exploitation and abuse through the penalties that it holds in reserve, but at the same time gives some discretion to prosecutors and judges to temper justice with mercy in difficult cases.

Part of living in a free democratic society is that we recognise that personal autonomy is not absolute. And one of the primary roles of government and the courts is to protect the most vulnerable, even sometimes at the expense of not granting liberties to the desperate.

Dr Peter Saunders is the campaign director for the Care Not Killing Alliance

Man who woke from 21 year coma would not have had a second chance if stealth euthanasia had been an option.

Alex Schadenberg
Executive Director - Euthanasia Prevention Coalition

Niall McGrath with family.

The family of Niall McGrath told the Irish Sun news that Niall would be dead if the decision passed by the UK’s Supreme Court last month allowing medical teams and family to withdraw life support without applying to the courts when Niall was in coma. The family is concerned that the decision to dehydrate to death people with brain injuries in the UK, may also be permitted in Ireland.

Last month, UK's Supreme Court decided that patients with permanent vegetative state (PVS) and minimally conscious state (MCS) can be dehydrated to death, without permission from the court, if the medical staff and relatives agree that this is in their ‘best interests’.

Since UK's Supreme Court decision, the British Medical Association (BMA) introduced draft guidelines that enable doctors to dehydrate and sedate to death non-dying patients with dementia, stroke or brain injuries. 

In writing about the BMA guidelines, Dr Peter Saunders stated:

This is a recipe for euthanasia by stealth, but all in the name of autonomy and ‘best interests’ – the very worst kind of doctor paternalism justified on the grounds that the patient would ‘have wanted’ it. 

There are conceivably tens of thousands of patients in England and Wales who are vulnerable to the use and abuse of this ‘guidance’. It will be almost impossible to work out what has happened in a given case and there are no legal mechanisms in place for bringing abusers to justice.

Niall was pronounced clinically dead in 1989. Life-sustaining treatment was withdrawn from him three times, but he continued to breath on his own. In 2010, Niall awoke from Coma after 21 years and he has been steadily recovering ever since. The Irish Sun reported:

Niall could not speak or move up to eight years ago and “now he’s able to stand up for 25 minutes and he can transfer himself from the wheelchair to the bed”. 

He also uses an iPad, and attends speech therapy.

Niall currently lives in a nursing home, which is inappropriate for a 50-year-old man with a brain injury. Nonetheless, he is alive. How many people are being killed by dehydration because they have been misdiagnosed or because the family or medical practitioners are not willing to wait for a recovery.

Medical experts now agree that 40% of people deemed to be in a PVS state are misdiagnosed.

'Persistent vegetative state' is not a reason to kill

This article was published by OneNewsNow on August 16, 2018

Dr Peter Saunders

An expert contends that the medical community needs to rethink its definition of “persistent vegetative state,” (PVS) and change its approach to its victims.

Severely brain-damaged patients are commonly misdiagnosed as being in a persistent vegetative state, according to Dr. Peter Saunders, who serves as campaign director for the Care Not Killing Alliance in the United Kingdom.

He pointed out that research shows that four in 10 people thought to be unconscious are actually aware of what is going on, but cannot respond.

Alex Schadenberg

Alex Schadenberg, who heads the Euthanasia Prevention Coalition, described this condition in greater detail.

“These are people who have what you call a “locked-in syndrome,” or their injury is to the part of the brain that makes it impossible for them to respond to you, but by testing, we can now prove that, in fact, they're hearing everything you're saying,” Schadenberg explained. “They can tell by their brain waves that these people can respond to you – perhaps not vocally or physically, but they do respond to questions with their brain.”

Too often, physicians and families lose hope, and their family member is dehydrated and starved to death – which Schadenberg says is inhumane.

“You couldn't kill a dog this way,” he insisted. “If you killed a dog this way, you could go to jail, but oh, because that human being has some cognitive disability – or might have had a car accident and isn't responding – therefore, we should kill them by dehydration. To me, that's a horrific concept.” 

Food and hydration is not medical treatment – it is a necessity of life.

Dr. Saunders contends that the PVS diagnosis should be dropped, and argues that doctors should deal with patients’ pain so that they can live.

New draft guidance from the British Medical Association (BMA) will enable doctors to dehydrate and sedate to death large numbers of non-dying patients with dementia, stroke or brain injury.

This article was published by Peter Saunders on his blog.

Dr Peter Saunders

By Dr Peter Saunders

This story was broken on 14 August 2018 by the Daily Mail.

Is it justifiable to withdraw food and fluids from patients with dementia, stroke and brain injury who are not imminently dying?

New ‘confidential’ draft guidance from the British Medical Association (BMA) - the doctors’ trade union - says ‘yes’ provided that a doctor believes it is in the patient’s ‘best interests’.

The 77-page ‘confidential’ document, which is currently out for ‘consultation’ (although only to a few selected individuals), has been prepared by the BMA in conjunction with the Royal College of Physicians (RCP) and the doctors’ regulatory authority, the General Medical Council (GMC).

I understand from the BMA that it will not be open for public consultation at any point before publication in the autumn.

The draft guidance builds on case and statute law and on previous practice guidelines and has huge implications for the care of some of the most vulnerable people in England and Wales.

It comes complete with a six-page executive summary, flow charts and tick box forms to smooth the decision-making process.

The guidance says it is based on the current legal position which it defines as follows:

• Clinically assisted nutrition and hydration (CANH) - essentially food and fluids by a fine tube through the nose or through the skin into the stomach - is a form of medical treatment
• Treatment should only be provided when it is in a patient’s 'best interests'
• Decision makers should start from the presumption that it is in a patient’s best interests to receive life-sustaining treatment but that presumption may be overturned in individual cases
• All decisions should be made in accordance with the Mental Capacity Act 2005 (see also my blog post on the recent Supreme Court judgment)

It focuses on three categories of patients where CANH is the ‘primary life-sustaining treatment being provided’ and who ‘lack the capacity to make the decision for themselves’: those with ‘degenerative conditions’ (eg. Dementia, Parkinson’s etc); those who have suffered a sudden-onset, or rapidly progressing brain injury and have multiple co-morbidities or frailty’ (eg. stroke); previously healthy patients who are in a vegetative state (VS) or minimally conscious state (MCS) following a sudden onset brain injury.

It makes it crystal clear that it does not cover patients who imminently dying and ‘expected to die within hours or days’ but rather those who ‘could go on living for some time if CANH is provided’.

So in summary, the guidance decrees that dementia, stroke and brain injured patients who lack mental capacity but are not imminently dying can be starved and dehydrated to death in their supposed ‘best interests’.

Who makes these decisions? If there is an advance directive for refusal of treatment (ADRT) then the patient does (or at least has). If there is an appointed health and welfare attorney then they do, and if it’s not the case that ‘all parties agree’ then it falls to the Court of Protection. But in the remainder of cases – which must by any reckoning be the vast majority – it is ‘usually a consultant or general practitioner’.

No second opinion need be obtained unless there is ‘reasonable doubt about the diagnosis or prognosis, or where the healthcare team has limited experience of the condition in question’ and even if the patient is suffering from PVS or MCS ‘it is not necessary to wait until (investigations) have been completed’ if there is not ‘sufficient evidence’ that they will ‘affect the outcome of the best interests assessment’ (Executive Summary para 14).

In other words, the diagnosis and prognosis are irrelevant if the decision is made that death is in the patient’s ‘best interests’. This is especially disturbing given that PVS and MCS are extremely difficult to diagnose, many patients have some degree of awareness and some later wake up.

And how are best interests to be determined? Decision makers must take into account ‘the individual’s past and present views, wishes, values and beliefs’ and in order to do this should consult ‘those engaged in caring for the patient or interested in his or her welfare’. This would ‘usually include family members and could also include friends and colleagues’.

So, what determines ‘best interests in a given case’?

It boils down to whether CANH is able to ‘provide a quality of life the patient would find acceptable’ (ES p23). Otherwise continuing to provide CANH is ‘forcing them to continue a life they would not have wanted’ (ES p16).

So, by a subtle twist, providing basic sustenance (food and fluids by tube) to someone who ‘would not have wanted’ to be in this ‘condition’ is a form of abuse. How very convenient.

The issue here, of course, is that most normal people do not think that they will find life with dementia, stroke or brain injury ‘acceptable’ and CANH – food and fluids - does not reverse these conditions just as it does not reverse cancer, diabetes, disabliity or mental illness.

This is precisely because CANH is not actually ‘treatment’ but rather part of basic care. But it does not follow that they should therefore have their lives ended. In fact, research shows that people who are sick value the quality of life they have left much more than they would expect to when well.

British parliaments have consistently refused to legalise euthanasia or assisted suicide for people with a quality of life they would not find ‘acceptable’ or would not ‘have wanted’. But the BMA is saying that to end these lives by starvation and dehydration, rather than with a lethal injection or drinking poison, is perfectly acceptable.

This is actually nothing other than euthanasia by stealth – euthanasia by the back door.
It might, and has, been argued that starving and dehydrating people to death over two to three weeks is actually less compassionate than killing them quickly with lethal drugs.

What safeguards are there against abuse of this new guidance? Very few it appears.

There is a section reminding doctors that the GMC requires ‘a second medical opinion’ from a suitably qualified ‘senior clinician’ where it is proposed ‘not to start, or to stop CANH and the patient is not within hours or days of death’. This clinician should (note not must) ‘examine the patient and review the medical records’.

A ‘detailed record’ of the decision-making process should be kept and a ‘model proforma’ (see below) is ‘recommended’. Decisions should be subject to ‘internal audit and review’ and ‘external review’ by the Care Quality Commission and Healthcare Inspectorate Wales but health professionals need to ‘contribute to’ ‘relevant national data collection’ only if it ‘exists’.

So, no legal, or even ethical, obligations – just suggested ‘best practice’.
Quite how oversight or accountability will be possible is unclear as the death certificates need not make any reference to the fact that the patient died from starvation and dehydration after a feeding tube was removed. Instead ‘the original brain injury or medical condition should be given as the primary cause of death’ (2.11). And so, the doctor’s tracks are perfectly covered.

The body of the draft guidance contains a flow chart (page 19) outlining the decision-making procedure to which I have added red arrows indicating what I suspect will be the main direction of travel (see above).

The simple ‘recommended’ ‘checklist’ (appendix 4 and left), which could be filled out in a few minutes, could be the only record that remains in the patient’s notes (see inserts).

What is largely disguised here in a lengthy and turgid 77-page document that few doctors or carers will ever read is a simple mechanism for ending the lives of dementia, stroke and PVS patients who are not imminently dying and who otherwise could live for months, years or even decades.

A decision is made by a GP or hospital consultant, on the basis of information about the patient gathered from relatives or carers, that they would not ‘have wanted’ to live this way.

A simple tick-box form is completed, the tube is removed and the patient in question is dehydrated, starved and sedated to death. The true cause of death is not recorded in the death certificate.

I’m not suggesting that large numbers of doctors will not undertake these assessments and decisions with integrity and diligence. But the problem is with the protocol itself. Also, it will only require a few to cut corners out of laziness or driven by malice, ideology or vested interest. This mechanism of ending vulnerable people’s lives – essentially a conveyor belt from nursing home and hospital bed to the morgue – is open to the most extraordinary abuse at every level by health professionals, family members and health institutions who might have an interest, financial or emotional, in a given patient’s death.

Imagine the busy nursing home filled with dependent but non-dying stroke, dementia and brain injured patients whose relatives seldom visit. Feeding tubes have been placed by staff because they are far more convenient than standing over patients and feeding them with a spoon. Wards are understaffed and the patients are difficult to care for.

A visiting GP makes a decision that it is not in a certain patient’s ‘best interests’ to live. Relatives are consulted and agree that their ‘loved ones’ would not ‘have wanted’ to live like this. A ‘second opinion’ is obtained. Forms are filled out. The tube is removed and the patient moved to a side room to receive ‘palliative care’ consisting of deep sedation until they have died two to three weeks later from dehydration.

The death certificate is falsified with only the underlying condition being recorded. No data are collected and there is no proper internal audit. Everyone is too busy and distracted. No questions are asked or answers given. They are not required as this is all ‘good practice’ approved by the BMA. The police do not investigate. The CPS does not prosecute. The courts are not involved. Parliament turns a blind eye as it lacks the stomach to review the relevant legislation. It is easier to leave it to the doctors and their professional ‘guidance’.

This is a recipe for euthanasia by stealth, but all in the name of autonomy and ‘best interests’ – the very worst kind of doctor paternalism justified on the grounds that the patient would ‘have wanted’ it.

There are conceivably tens of thousands of patients in England and Wales who are vulnerable to the use and abuse of this ‘guidance’. It will be almost impossible to work out what has happened in a given case and there are no legal mechanisms in place for bringing abusers to justice.

How did we get here? This whole process has transpired by a small series of steps – each following logically from the one before and endorsed in case law, statute law, regulations and guidelines going back to the Law Lord’s decision on Hillsborough victim Tony Bland who was the first to die in this way. But the trickle is about to become a flood.

Once we accept that food and fluids by tube is ‘medical treatment’ rather than basic care and that providing this basic sustenance to someone with a medical condition they would not find ‘acceptable’ is not in their ‘best interests’, then we are inviting professionals to devise a simple scheme whereby the starvation of large numbers of non-dying but expensive and ‘burdensome’ patients can be achieved simply and efficiently, and largely undetected, without involving the courts.

When it came to light a few years ago that some doctors were misusing a palliative care tool called the Liverpool Care Pathway to starve, dehydrate and sedate non-dying patients to death there was a national outcry.

One might have expected to see a similar reaction to this draft BMA guidance. But thus far there has been not a whimper.

I am astounded that no MP or prominent doctor has yet raised any concerns about it. I wonder how long it will be.

You can read CMF’s official response to the BMA draft guidance here.

Severely brain-injured patients are commonly misdiagnosed, often aware and may well recover, says authoritative new report

This article was written by Dr Peter Saunders and published on his blog on August 12, 2018.

Dr Peter Saunders

By Dr Peter Saunders

People with severe brain damage are difficult to diagnose reliably, not uncommonly recover and are often much more aware than we think. Specifically:

Four in ten people who are thought to be unconscious are actually aware

One in five people with severe brain injury from trauma will recover to the point that they can live at home and care for themselves without help

The term PVS should be dropped and that pain relief should be given to patients affected

These are the startling conclusions of a new US practice guideline for managing prolonged disorders of consciousness (PDOC) issued earlier this week.

The guideline is acutely relevant to the UK, where on 30 July 2018, the British Supreme Court made a landmark decision, that food and fluids can be withdrawn from patients with PDOC provided that both doctors and relatives agree it is in a given patient’s ‘best interests’.

According to Prof Derick Wade, a consultant in neurological rehabilitation based in Oxford, there could be as many as 24,000 patients in the NHS in England alone either in permanent vegetative state (PVS) or minimally conscious state (MCS), most of them in nursing homes.

A summary of the guideline, together with an accompanying literature review on which it was based, was published online on 8 August 2018 in the medical journal Neurology. An accompanying press release summarises the main points.

The new guideline updates the earlier 1994 AAN practice parameter on persistent vegetative state and the 2002 case definition for the minimally conscious state (MCS), some of the recommendations of which ‘probably no longer hold true’ according to lead author Joseph Giacino.

The guideline carries weighty authority because it has been issued by the American Academy of Neurology (AAN), the world’s largest association of neurologists and neuroscience professionals, with over 34,000 members.

Experts carefully reviewed all of the available scientific studies on diagnosing, predicting health outcomes and caring for people with disorders of consciousness, focusing on evidence for people with prolonged disorders of consciousness—those cases lasting 28 days or longer.

The majority of those with PDOC are young people who have suffered head injuries or older people with hypoxic brain damage (lack of oxygen to the brain, for example during a cardiac arrest).

Errors in assessing awareness
People with PVS are awake, with eyes open, but do not exhibit behaviour suggesting they are aware either of themselves or their surroundings. Those with MCS show definite signs of awareness of self or surroundings, but often, these behaviours may not be obvious or may not happen regularly. These signs include tracking people with their eyes or following an instruction to open their mouths, but the behaviours are often subtle and inconsistent.

The guideline, based on the latest research, states that about four in ten people who are thought to be unconscious are actually aware. This 40% rate of misdiagnosis is because underlying impairments can mask awareness, argues Giacino, and can lead to inappropriate care decisions as well as poor health outcomes.

‘An inaccurate diagnosis can lead to inappropriate care decisions and poor health outcomes.

Misdiagnosis may result in premature or inappropriate treatment withdrawal, failure to recommend beneficial rehabilitative treatments and worse outcome. That is why an early and accurate diagnosis is so important’, he argues.

As neuroscientist Adrian Owen's research demonstrates through the extraordinary testimonies in his book 'Into the Grey Zone', reviewed here by Chris Willmott, some patients with PVS and MCS have far more awareness than we might possibly imagine.

It is therefore essential that assessments of these patients are carried out only by real experts.

The guideline states, ‘People with prolonged disorders of consciousness after a brain injury need ongoing specialized health care provided by experts in diagnosing and treating these disorders.

Problems with diagnosis

The guideline enlarges on this as follows (see here for the accompanying academic references):

‘The range of physical and cognitive impairments experienced by individuals with PDOC complicate diagnostic accuracy and make it difficult to distinguish behaviours that are indicative of conscious awareness from those that are random and nonpurposeful.

Interpretation of inconsistent behaviours or simple motor responses is particularly challenging. Fluctuations in arousal and response to command further confound the reliability of clinical assessment.

Underlying central and peripheral impairments such as aphasia, neuromuscular abnormalities, and sensory deficits may also mask conscious awareness.

Clinician reliance on nonstandardised procedures, even when the examination is performed by experienced clinicians, contributes to diagnostic error, which consistently hovers around 40 percent.

Diagnostic error also includes misdiagnosing the locked-in syndrome (a condition in which full consciousness is retained) for vegetative state and minimally conscious state (MCS).’

To get the right diagnosis, a clinician with specialized training in management of disorders of consciousness, such as a neurologist or brain injury rehabilitation specialist, should do a careful evaluation. This should be repeated several times early in recovery—especially during the first three months after a brain injury.’

But it is not only diagnosis that is problematic. Prognoses too can be widely mistaken.

Difficulties in predicting outcomes

‘The outcomes for people with prolonged disorders of consciousness differ greatly. Some people may remain permanently unconscious. Many will have severe disability and need help with daily activities. Others will eventually be able to function on their own and some will be able to go back to work.’

According to the guideline, approximately one in five people with severe brain injury from trauma will recover to the point that they can live at home and care for themselves without help. Those with a brain injury from trauma have a better chance of recovery than those with a brain injury from other causes.

What about treatment?

Treatments do exist

‘Few treatments for disorders of consciousness have been carefully studied. However, moderate evidence shows that the drug amantadine can hasten recovery for persons with disorders of consciousness after traumatic brain injury when used within one to four months after injury.’

There are also advances being made in the treatment of some acute brain injury because of brain cooling techniques, intracranial pressure monitoring and neurosurgery.

Commenting on the new guideline, an editorial in Neurology, agrees that the term PVS should be dropped and that pain relief should be given to patients affected.

Authors Joseph Fins and James Bernat, argue in their review titled ‘Ethical, palliative, and policy considerations in disorders of consciousness’ that PVS should be renamed as ‘chronic vegetative state given the increased frequency of reports of late improvements’.

They also advocate ‘routine universal pain precautions as an important element of neuropalliative care for these patients given the risk of covert consciousness’ and ‘applaud the Guideline authors for this outstanding exemplar of engaged scholarship in the service of a frequently neglected group of brain-injured patients’.

Conclusions

The publication of the new guideline, casts further doubt on last week’s UK Supreme Court decision and will no doubt lead to further criticism.

I have argued previously that doctors should not be starving and dehydrating non-dying brain damaged patients to death in any circumstances at all. The fact that a substantial number of these patients are misdiagnosed, feel pain and will later recover only makes the case more strongly.

Tony Bland

This state of affairs was predicted in 1993 by Andrew Fergusson, former CMF General Secretary, when he argued that the Law Lords in the case of Hillsborough victim Tony Bland had made three key false assumptions: that food and fluids is treatment and not basic care; that death is in some people’s ‘best interests’; and that it is not euthanasia when food and fluids are withdrawn with the explicit intention of casing death by starvation and dehydration. Andrew’s whole article, ‘Should tube feeding be withdrawn in PVS?’ is well worthy of further study by all with an interest in this area.

The new guideline, issued by the American Academy of Neurology, has been jointly published by the American Congress of Rehabilitation Medicine and the National Institute on Disability, Independent Living, and Rehabilitation Research and has been endorsed by the American Academy of Physical Medicine and Rehabilitation, American College of Surgeons Committee on Trauma and Child Neurology Society.

I wonder how our own British medical organisations (and in particular the BMA and Royal College of Physicians) will respond. Given that they backed the Supreme Court decision, they most certainly ought to be asked for comment.

Euthanasia lobby supports death by dehydration. Acknowledges that it leads to lethal injection.

The following article was published by Dr Peter Saunders on August 3, 2018.

Peter Saunders

By Dr Peter Saunders - The campaign director for the Care Not Killing Alliance in the UK.

The former Voluntary Euthanasia Society, rebranded ‘Dignity in Dying’ (DID) in 2006, in order to disguise its real objectives, has always been quick to emphasise that it only supports a change in the law to allow so-called ‘assisted dying’.

By this it means allowing mentally competent adults with less than six months to live to end their lives by being assisted to drink a lethal draft of barbiturate. ‘Assisted dying’ is, more accurately, assisted suicide for the terminally ill.

Both the Marris bill, which was defeated in the House of Commons in 2015, and the Falconer Bill, which ran out of parliamentary time in the House of Lords several months earlier, applied this ‘assisted dying’ formula. So did the Conway case, recently rejected by the Court of Appeal. All were understandably backed by DID.

DID, therefore, have always maintained that they oppose assisted suicide or euthanasia for the chronically ill, disabled people and those who lack mental capacity. You have to be a mentally competent adult with under six month’s life expectancy to qualify.

It was therefore interesting to see them so actively involved in the recent Supreme Court case involving a man (Mr Y) who was left in a minimally conscious state (MCS) following a heart attack.

The Supreme Court ruled on Monday 30 July, that it is no longer necessary for cases involving patients suffering from PVS (permanent vegetative state) or MCS to go to the Court of Protection before CANH (clinically assisted nutrition and hydration) can be stopped, provided that both doctors and relatives are in agreement that this is in the patient’s ‘best interests’.

The judgement built on legal precedent dating back to the case of Hillsborough victim Tony Bland in 1993 – namely that death is some people’s ‘best interests’ and that deliberate dehydration is a legitimate means of achieving it.

The effect of this week’s ruling is that patients with PVS and MCS can now be dehydrated to death over a period of 2 to 3 weeks without recourse to the courts providing doctors and relatives agree that they would not have wanted to go on living with this degree of disability.

But adults with PVS or MCS lack mental competence and are not dying. They can breathe without ventilators, respond to painful stimuli and often live for years, if not decades, provided their basic requirements for food and fluids are met.

They most certainly do not fall in the category of patients that DID have previously targeted and by no stretch of the imagination can their deaths from dehydration therefore be called ‘assisted dying’.

It is therefore most revealing that the barrister representing Mrs Y in the case, was none other than Victoria Butler-Cole, the chair of trustees of DID’s sister charity ‘Compassion in Dying’ (CID).

On the day that the Supreme Court handed down its decision other staff and trustees of DID were also very active on the media in support of the decision. These included chief executive Sarah Wootton, director of legal strategy and policy Davina Hehir and trustee Jonathan Romain.

In the Netherlands, where voluntary euthanasia is legal, death by deliberate dehydration (by withdrawing or withholding food and fluids) is categorised as an end of life decision with the ‘explicit intention of ending life’. This is because that is what it actually is, and the Dutch are not known for beating about the bush. It is a method of killing.

Other decisions in this category include euthanasia (achieved with a lethal injection of barbiturate), assisted suicide (as above), deliberate morphine overdose (as used recently in Gosport to kill over 450 people) and continuous deep sedation (whereby a patient is sedated until they eventually die from dehydration).

These practices, apart from euthanasia itself, all represent ‘euthanasia by stealth’. In other words they are methods of deliberately ending a person’s life that fall short of administering a lethal injection. But they have the same intention. The key issue morally and ethically is the intention to end life.

DID’s behaviour around this Supreme Court case is not new but has in fact been part of pro-euthanasia strategy for over 30 years.

Dr Helga Kuhse, a leading campaigner for euthanasia, said in 1984: 

‘If we can get people to accept the removal of all treatment and care - especially the removal of food and fluids - they will see what a painful way this is to die and then, in the patient's best interest, they will accept the lethal injection.’ (Fifth Biennial Congress of Societies for the Right to Die, held in Nice, Sept. 1984).

So we should not be surprised by this week’s events. Rather, they demonstrate the full extent of DID’s (and CID’s) agenda and the lengths they are prepared to go in order to achieve it. Including dehydrating non-dying disabled people to death - which I suggest could be described neither as dignified nor compassionate.

The great tragedy is that although patients with PVS or MCS lack some or in severe cases all awareness, they still respond to pain.

Therefore, we can expect as this new ruling takes effect, for reports to surface about brain-damaged patients suffering pain and distress from thirst while they are being dehydrated to death.

You can be sure that this will then be used as an argument to bring in lethal injections in order to achieve the desired end more quickly and with the minimum of fuss.
 
After all, it will be argued, that is what these patients would have really wanted.

British Supreme Court sets a dangerous precedent by ruling that doctors can withdraw food and fluids from brain injured patients without court permission.

The following article was published by Peter Saunders on his blog on July 30, 2018

Dr Peter Saunders

By Dr Peter Saunders

My Radio Four Today programme interview on this case is here. Five Live here.

Should doctors be able to withdraw food and fluids from severely brain-damaged people who are not imminently dying? And if so, in what circumstances?

The answer to these questions has changed significantly today because of a decision by the Supreme Court.

Patients with permanent vegetative state (PVS) and minimally conscious state (MCS) can now be effectively starved and dehydrated to death if the medical staff and relatives agree that this is in their ‘best interests’.

People with PVS (awake but not aware) and MCS (awake but only intermittently or partially aware) can breathe without ventilators but need to have food and fluids by tube (clinically assisted nutrition and hydration or CANH).

These patients are not imminently dying and with good care can live for many years. Some even regain awareness. But if CANH is withdrawn, then they will die from dehydration and starvation within two or three weeks.

Until last year all cases of PVS and MCS have had to go to the Court of Protection before CANH could be withdrawn.

Under the old rules, only about 100 applications to stop tube feeding have been made in more than 20 years, since the Tony Bland case created the precedent in 1993. But this could now hugely increase.

In two cases last year (known as M and Y) the High Court ruled that if the relatives and medical staff agreed that withdrawal of CANH was in the patient’s ‘best interests’ then the court need not be involved.

Three medical bodies - the BMA, RCP and GMC - issued interim guidance in line with this decision last December and at the same time the Court of Protection similarly changed its rules.

The Official Solicitor appealed this decision to the Supreme Court in a hearing in February. The Supreme Court has only just issued its judgement today effectively upholding the decision of the High Court.

In

Lady Black

giving her judgement, Lady Black, with whom the other four Supreme Court judges fully agreed, made three critical rulings.

First, she argued that ‘there may come a time when life has to be relinquished because that is in the best interests of the patient’.

Second, she said that that there is no difference in principle between turning off a ventilator and removing a feeding tube as both are ‘forms of medical treatment’.

Third, she said patients with PVS and MCS should be treated in the same way as people with ‘severe stroke’ a ‘degenerative neurological condition’ or ‘other condition with a recognised downward trajectory’ where ‘decisions to withhold or withdraw CANH are made on a regular basis without recourse to the courts’.

In making these declarations Lady Black has dramatically moved the goalposts on end of life decision-making.

Once we accept that death by dehydration is in some brain-damaged people’s ‘best interests’ we are on a very slippery slope indeed.

There is a clear difference between turning off a ventilator on a brain-dead patient and removing CANH from a brain-damaged patient. In the first case the patient dies from their underlying brain injury. In the second they die from dehydration and starvation.

Similarly, PVS and MCS differ from conditions with a ‘downward trajectory’ because they are not progressive and do not in themselves lead inevitably to death.

British Supreme Court

The Supreme Court has set a dangerous precedent. Taking these decisions away from the Court of Protection removes an important layer of legislative scrutiny and accountability and effectively weakens the law.

It will make it more likely that severely brain-damaged patients will be starved or dehydrated to death in their supposed ‘best interests’ and that these decisions will be more influenced by those who have ideological or financial vested interests in this course of action.

Prof Derick Wade, a consultant in neurological rehabilitation based in Oxford, estimates there could be as many as 24,000 patients in the NHS in England either in PVS or MCS, with most of them in nursing homes.

Given that it costs about £100,000 per year to care for a person with PVS or MCS the potential ‘saving’ for the NHS could be as much as £2.4 billion annually if most seek to go down this route. This is not a temptation we want to put before medical staff and administrators given current financial pressures.

But it is also bad medicine.

There are still significant uncertainties about diagnosis and prognosis in both PVS and MCS. These have increased rather than decreased in the last 20 years and this is why continued court oversight is necessary.

Making judgements about diagnosis, prognosis and best interests in these cases is fraught with difficulty and should be carried out only by those with specialist experience.

The Court of Protection has already overturned some doctors’ decisions in previous cases and some patients have recovered awareness months or even years after being diagnosed with PVS or MCS. This is more common after traumatic brain injury than after oxygen deprivation.

There are also advances being made in the treatment of some acute brain injury because of brain cooling techniques, intracranial pressure monitoring and neurosurgery.

But most seriously there is the real risk that those who have vested ideological, financial or emotional interests in a person’s death could exert undue influence.

Recent experiences around the Liverpool care pathway, and in the Gosport hospital, should make us wary of leaving doctors without proper regulatory and legal oversight.

When difficult medical decisions are left to doctors who are inexperienced, inadequately trained or working under intense pressure bad decisions can be made.

When they are left to those who believe that brain-damaged patients are better off dead then we are in a very dangerous place indeed.

It is just possible that today’s Supreme Court decision will not change medical practice in this area. But I am not holding my breath.

The full judgement is available here and the press summary of the judgement here.

Care Not Killing welcomes the UK Court of Appeal’s sensible decision to reject this latest attempt to legalise assisted suicide

Press Release issued on behalf of Care Not Killing
 (UK)
RELEASE DATE: Wednesday 27th June 2018

Care Not Killing (UK) welcomes the Court of Appeal’s sensible decision to reject this latest attempt to legalise assisted suicide and to uphold fully the earlier decision of the divisional court.

The case, brought by Noel Conway, argued that the current blanket ban on assisted suicide under the Suicide Act is incompatible with his human rights.

However, this argument has been repeatedly rejected by the Courts, only last year in the Divisional Court three senior and experienced judges dismissed this argument, saying:

“It is legitimate in this area for the legislature to seek to lay down clear and defensible standards in order to provide guidance for society, to avoid distressing and difficult disputes at the end of life and to avoid creating a slippery slope leading to incremental expansion over time of the categories of people to whom similar assistance for suicide might have to [be] provided... we find that section 2 (right to life) is compatible with the Article 8 rights (private and family life) of Mr Conway. We dismiss his application for a declaration of incompatibility.”

The Court of Appeal has now fully upheld this earlier judgement and ruled that the current blanket ban on assisted suicide achieves a fair balance between the interests of the wider community and the interests of people in the position of Mr Conway.

The objectives of this ban are not limited to the protection of the weak and vulnerable, but also include respect for the sanctity of life and the promotion of trust between patient and doctor in the care relationship.

In British Parliaments there have been over ten attempts to change the law on assisted suicide since 2003, all of which have failed. The most recent of these, was in the House of Commons in 2015 and was defeated by the huge majority of 330 to 118.

Members of Parliament, just like every major doctors’ group and disability rights groups expressed concerns about public safety, the failure of safeguards in the handful of places that have assisted suicide or euthanasia and the discriminatory message removing universal protections, from the sick, elderly and dying would send.

Dr Peter Saunders

Dr Peter Saunders, Campaign Director of Care Not Killing commented: 

 “This sensible decision by the Court of Appeal yet again recognises that the safest law is the one we already have - a complete ban on assisted suicide and euthanasia. Our laws deter the exploitation, abuse and coercion of vulnerable people, who as we have seen in the US States of Oregon and Washington often cite feeling they have become a financial, or care burden as the reason for ending their lives.

“While there are those who argue that feeling that you are a burden on others is reason enough to seek help to kill yourself, it is this sort of chilling and regressive view that led Paralympian Baroness Grey-Thompson to warn that vulnerable and disabled people risked being collateral damage, if the law were to be changed. This view is echoed by the British Medical Association, the Association of Palliative Medicine, the Royal Colleges and Care Not Killing.

“We hope that those who have been campaigning to remove these important and universal protections from the disabled and infirm accept this ruling. It is now time for them to move on and turn their attention instead to how we can secure equality of access to the very best health care for all. This must include palliative care and mental health support, because we know when the physical, psychological and spiritual needs of patients are met, there is no pressure for change.”

For media inquiries, please contact Alistair Thompson on 07970 162225.

Ends

Notes for Editors

Care Not Killing is a UK-based alliance bringing together around 50 organisations - human rights and disability rights organisations, health care and palliative care groups, faith-based organisations groups - and thousands of concerned individuals.

We have three key aims: 

• to promote more and better palliative care; 
• to ensure that existing laws against euthanasia and assisted suicide are not weakened or repealed during the lifetime of the current Parliament;  
• to inform public opinion further against any weakening of the law.

The Conway Case was heard by the Court of Appeal between 30 April – 4 May.

Dr Peter Saunders, Campaign Director of Care Not Killing will be available for interview in London.