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

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to the UK, where on 30 July 2018, the British Supreme Court made a landmark decision, that food and fluids can be withdrawn from patients with PDOC provided that both doctors and relatives agree it is in a given patient’s ‘best interests’.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

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.

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

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.

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.

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

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.’

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).’

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.

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 (pictured above) 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.

New draft guidance from the BMA will enable doctors to dehydrate and sedate to death large numbers of non-dying patients with dementia, stroke or brain damage

This story was broken on 13 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 comorbidities 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.  

The simple ‘recommended’ ‘checklist’ (appendix 4), 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.

Dignity in Dying’s response to this week’s Supreme Court ruling reveals its real agenda

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. And as neuroscientist Adrian Owen's research demonstrates in his book 'Into the Grey Zone' some of them have far more awareness than we might imagine.

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. 

Conway assisted suicide case – autonomy is not absolute and this latest appeal should be dismissed

Watch my previous Sky News interview on the Conway case here and listen to my radio interviews on BBC Shropshire and Coventry.

A 68-year-old Shropshire man with motor neurone disease (MND) who wants help from doctors to kill himself has been granted permission to appeal an earlier decision rejecting his case. 

The judgement (see here) was handed down today (18 January 2018) following an oral hearing at the Royal Courts of Justice. 

Noel Conway is backed by the former Voluntary Euthanasia Society (now rebranded Dignity in Dying (DID)), whose lawyers have argued that the current blanket ban on assisted suicide under the Suicide Act is incompatible with his rights under section 8 of the Human Rights Act (respect for private and family life).

Following a four-day hearing in the high court last July three senior judges dismissed Conway’s case on 5 October (judgement here). They summarised their conclusions as follows:  

'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 (of the Suicide Act 1961) is compatible with the Article 8 rights (private and family life) of Mr Conway. We dismiss his application for a declaration of incompatibility.'

The Divisional Court refused permission to appeal, so Mr Conway then filed an application in the Court of Appeal seeking permission directly. This has now been granted.

Conway's case is substantially the same as that of Tony Nicklinson and Paul Lamb in 2014, except that his condition is terminal.

There have been over ten attempts to legalise assisted suicide through British Parliaments since 2003, all of which have failed. The last of these was the Marris Bill in 2015 which was defeated by an overwhelming majority of 330 to 118 in the House of Commons amidst concerns about public safety.

Frustration at their lack of success in parliament has led DID and other campaigners to pursue their agenda through the courts.

In the last hearing Humanists UK (formerly the British Humanists’ Association (BHA)) intervened on the side of Conway and Not Dead Yet UK and Care Not Killing (CNK) on the side of the defendant.

A change in the law is opposed by every major disability rights organisation and doctors' group, including the BMA, Royal College of GPs and the Association for Palliative Medicine, who have looked at this issue in detail and concluded that there is no safe system of assisted suicide and euthanasia anywhere in the world.

Laws in the Netherlands and Belgium that were only meant to apply to mentally competent terminally ill adults, have been extended to include the elderly, disabled, those with mental health problems and even non-mentally competent children.

While in Oregon, the model often cited by those wanting to change the law, there are examples of cancer patients being denied lifesaving and life-extending drugs, yet offered the lethal cocktail of barbiturates to end their own lives.

Article 8 of the Human Rights Act 1998 (Right to respect for private and family life) states (8(1)) that ‘Everyone has the right to respect for his private and family life, his home and his correspondence.’

However, this right is not unlimited but is qualified in 8(2). Following this principle CNK and others argued that a blanket prohibition on euthanasia and assisted suicide was ‘necessary in a democratic society in the interests of public safety for the prevention of disorder or crime, for the protection of health or morals, and for the protection of the rights and freedoms of others.’

They also argued that to pursue this case in court was institutionally inappropriate given that parliament has repeatedly, rigorously and comprehensively considered this issue and decided not to change the law.

Legalising assisted suicide and/or euthanasia is dangerous because any law allowing either or both will place pressure on vulnerable people to end their lives in 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’.

The legalisation of assisted suicide and/or euthanasia is uncontrollable in practice because any law allowing either or both will be subject to incremental extension. We have observed in jurisdictions like Belgium and the Netherlands that over time there is an expansion of categories to be included beyond those originally intended and without any further change in the law: a shift from terminal conditions to chronic conditions, from physical illnesses to mental illnesses and from adults to children.

The essential problem is that the two major arguments for euthanasia - autonomy and compassion - can be applied to a very wide range of people. This means that any law which attempts to limit them, for argument’s sake to mentally competent people who are terminally ill, will in time be interpreted more liberally by sympathetic or ideologically motivated ‘assisters’ and may also be open to legal challenge under equality legislation on grounds of discrimination.

The legalisation of assisted suicide and/or euthanasia is also unnecessary because requests for euthanasia or assisted suicide are extremely rare when people’s physical, social, psychological and spiritual needs are adequately met. The overwhelming majority of people with terminal illnesses, including those with MND, want ‘assisted living’ not ‘assisted suicide’.

The safest law is one like Britain’s current law, which gives 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 hard cases.

Leaving the law as it is will mean that some people who desperately wish help to end their lives will not have access to such a service. But 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.

This issue has been considered exhaustively by parliaments and courts in the UK and is settled. While having every sympathy with Mr Conway's personal plight the consequences for society are too dangerous and far-reaching. I hope that the Court of Appeal will stand by the previous high court judgement and dismiss his case. 

The Conway Case – a change in the law to allow assisted suicide is dangerous and unnecessary

Watch my Sky News interview on the Conway case here.

A 67-year-old Shropshire man with motor neurone disease (MND) is seeking to overturn the law banning assisted suicide.

Noel Conway is backed by the former Voluntary Euthanasia Society (now rebranded Dignity in Dying (DID)), whose lawyers will argue that the current blanket ban on assisted suicide under the Suicide Act is incompatible with his rights under sections 8 and 14 the Human Rights Act (respect for private and family life and protection from discrimination).

The four day hearing in the high court, involving three senior judges, begins on Monday 17 July.

Mr Conway's case is substantially the same as that of Tony Nicklinson and Paul Lamb in 2014, except that his condition is terminal.

There have been over ten attempts to legalise assisted suicide through British Parliaments since 2003, all of which have failed. The last of these was the Marris Bill in 2015 which was defeated by an overwhelming majority of 330 to 118 in the House of Commons amidst concerns about public safety.

Frustrated at their lack of success in parliament has led DID and other campaigners to pursue their agenda through the courts.

Conway is bringing his case against the Secretary State for Justice. Three other organisations have been granted permission to intervene in the case – Humanists UK (formerly the British Humanists’ Association (BHA)) on the side of Conway and Not Dead Yet UK and Care Not Killing (CNK) on the side of the defendant.

A change in the law is opposed by every major disability rights organisation and doctors' group, including the BMA, Royal College of GPs and the Association for Palliative Medicine, who have looked at this issue in detail and concluded that there is no safe system of assisted suicide and euthanasia anywhere in the world.

Laws in the Netherlands and Belgium that were only meant to apply to mentally competent terminally ill adults, have been extended to include the elderly, disabled, those with mental health problems and even non-mentally competent children.

While in Oregon, the model often cited by those wanting to change the law, there are examples of cancer patients being denied lifesaving and life extending drugs, yet offered the lethal cocktail of barbiturates to end their own lives.

Article 8 of the Human Rights Act 1998 (Right to respect for private and family life) states (8(1)) that ‘Everyone has the right to respect for his private and family life, his home and his correspondence.E+W+S+N.I.’

However, this right is not unlimited but is qualified in 8(2). CNK will argue that a blanket prohibition on euthanasia and assisted suicide is ‘necessary in a democratic society in the interests of public safety for the prevention of disorder or crime, for the protection of health or morals, and for the protection of the rights and freedoms of others.’

CNK will also argue that to pursue this case in court is institutionally inappropriate given that parliament has repeatedly, rigorously and comprehensively considered this issue and decided not to change the law.

Legalising assisted suicide and/or euthanasia is dangerous because any law allowing either or both will place pressure on vulnerable people to end their lives in 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’.

The legalisation of assisted suicide and/or euthanasia is uncontrollable in practice because any law allowing either or both will be subject to incremental extension. We have observed in jurisdictions like Belgium and the Netherlands that over time there is an expansion of categories to be included beyond those originally intended and without any further change in the law: a shift from terminal conditions to chronic conditions, from physical illnesses to mental illnesses and from adults to children.

The essential problem is that the two major arguments for euthanasia - autonomy and compassion - can be applied to a very wide range of people. This means that any law which attempts to limit them, for argument’s sake to mentally competent people who are terminally ill, will in time be interpreted more liberally by sympathetic or ideologically motivated ‘assisters’ and may also be open to legal challenge under equality legislation on grounds of discrimination.

The legalisation of assisted suicide and/or euthanasia is also unnecessary because requests for euthanasia or assisted suicide are extremely rare when people’s physical, social, psychological and spiritual needs are adequately met. The overwhelming majority of people with terminal illnesses, including those with MND, want ‘assisted living’ not ‘assisted suicide’.

The safest law is one like Britain’s current law, which gives 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 hard cases.

Leaving the law as it is will mean that some people who desperately wish help to end their lives will not have access to such a service. But 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.

The Culture of Life - Keynote Speech for Alliance of Prolife Students Celebration and Fundraiser

I gave the keynote address at Alliance of Pro-life Students Celebration and Fundraiser in London on 20 October 2016. Here is a full transcript.

Tomorrow, 21 October, Lord Shinkwin’s Abortion (Disability Equality) Bill will have its second reading in the House of Lords.

Most people are unaware that abortion is legal in Britain right up until birth for babies with disabilities. Last year a record number of 230 babies with special needs were aborted beyond 24 weeks, the age at which most will survive in a neonatal unit if born prematurely.

In total last year there were 3,213 babies with disabilities aborted in this country, over 1,000 of them more than halfway through pregnancy. 689 of these had Down’s syndrome. 11 had cleft lip or palate.

Lord Shinkwin is arguing that this is profoundly discriminatory - eugenic even.  He wants to remove ‘ground E’ (1(1)(d)), which enables any baby with a significant risk of a serious abnormality to be aborted, from the Abortion Act altogether.

He is supported by the ‘Were all Equal’ campaign – who argue that the current law is out of date – it promotes inequality, reinforces negative stereotypes and is inconsistent with disability discrimination legislation for after birth.

One of their most powerful spokespeople is actress and Bridget Jones star Sally Phillips, who has argued powerfully that children like her eleven-year-old son Ollie, who has Down’s syndrome, have as much right to live as anyone else.

But, of course, the present law also discriminates on the basis of age.

We would be horrified if a woman could have her newborn baby daughter put down simply because she was the result of an unplanned pregnancy, posed an economic burden or was socially inconvenient.

But the law allows exactly this for babies just a few weeks younger – 200,000 of them every year in Britain. Under the Abortion Act over eight million preborn babies have been ‘terminated’ since 1967 – one in every five pregnancies ends in abortion and one in every three British women will have an abortion: eight million British citizens who were never given the chance to live.

This year the ‘We Trust Women’ campaign was launched by pro-abortion activists aiming to decriminalise abortion altogether. A new bill attempting to liberalise the law in Northern Ireland was lodged on 19 October. There are similar moves already underway on the Isle of Man.

Back in 2008 a whole host of amendments to the Human Fertilisation and Embryology Bill were tabled in the Westminster Parliament. MPs were seeking to remove the two doctor provision, allow nurse and home abortions, allow abortion on demand up until three months gestation and extend the Abortion Act to Northern Ireland. 

Thankfully all these measures failed when the economic crisis struck, leading the prime minister Gordon Brown to cut time in debating abortion amendments in order to save the nations’ banks.

Last year 38% of all abortions were repeats and 95 British women had their eighth abortion or greater – evidence that abortion is simply being used as a form of birth control.

Over 98% of British abortions have been carried out on mental health grounds although, according to a major recent systematic review, there is actually no medical evidence that continuing a pregnancy poses any greater risk to a mother’s mental health than having an abortion. If anything the opposite is true. This means that 98% of British abortions are technically illegal and that the 500 doctors every day who put their signature to a statutory document ticking the mental health box are actually committing perjury.

And yet the law is not upheld. The police do not investigate. The CPS does not prosecute. Courts do not convict or sentence and parliament turns a blind eye.

In fact judges rule against those who attempt to apply the law.

Aisling Hubert, who attempted to bring a private prosecution against two doctors, who authorised abortion purely on grounds that the baby was female, has been ordered to pay court costs of £47,000.

People who maintain silent vigils outside abortion clinics or offer counselling to women with crisis pregnancies are threatened and intimidated and driven out of the public square.

And sadly the medical profession have colluded with this whole sorry state of affairs.

Abortion is against the Hippocratic Oath, against the Declaration of Geneva and against the International Code of Medical Ethics. In 1947 the British Medical Association called it the ‘greatest crime’.

And yet now the Royal College of Obstetricians and Gynaecologists calls abortion ‘a basic healthcare need’ and the British Medical Association is pushing to liberalise the law even further. Meanwhile, the General Medical Council (GMC) refuses to give up the names of 67 doctors who are known illegally to have pre-signed abortion authorisation forms without even seeing the women who would use them.   

In 1967 Britain was the first Western country outside Scandinavia to legalise abortion. And in so doing this country paved the way for the legalisation of abortion throughout the English speaking world.

Today, authorities quote 43 million abortions as the annual figure worldwide.

This is an astounding figure. 55 million people died in the entire five years of the Second World War. 57 million people each year from all causes other than abortion. This means that of every 100 human deaths on this planet 43 of them involve babies in the womb being killed by healthcare workers.

There is no one more innocent, more vulnerable and killed in greater numbers than the baby in the womb. Ironically, what should be the safest sanctuary on earth has become a more dangerous place that even Mosul or Aleppo.

The right to life is the most fundamental of all human rights and the right on which all other rights are based. It is meaningless to speak of the right to food and clothing, the right to free speech, the right to education, the right to own property, the right to fair compensation for work, the right to freedom from harassment, the right not to be abused or sexually violated - if you are not alive. The right to life is the foundation on which all other rights are built.

So when we are talking about abortion we are talking about the deprivation of the most fundamental of all rights from the most innocent, vulnerable and helpless of all human beings for the most trivial of all reasons and in the greatest of all numbers.

That alone must make abortion one of the most serious human rights abuses in the world today. And also the least defended.

The Alliance of Prolife Students supports the right to life of all human beings from fertilisation until natural death. In so doing it stands against discrimination on the basis of mental and physical disability, against discrimination on the basis of age, against discrimination on the basis of size and against discrimination on the basis of neurological capacity.

This is the only possible position to take for those who are opposed to all discrimination.  And if consistently held it must also lead to a defence of human embryos.

Human embryos from the moment of fertilisation are human lives. They are not potential human lives. They are human lives with potential. They are potential children and adults. As human lives they are worthy of our empathy, wonder, compassion and protection including legal protection.

Sadly, but not surprisingly in the wake of the Abortion Act, the first Human Fertilisation and Embryology Act of 1990 rendered human embryos non-persons and deprived them of legal protection.

The HFE Act made it legal to freeze, experiment upon, select and dispose of human embryos. In 2012 the Daily Telegraph reported on 20 years of this activity.  More than 3.5 million embryos created, 840,000 put in storage, 5,900 set aside for research, 1.4 million implanted – of which fewer than one in six led to pregnancy and 1.7 million were discarded unused.

The Warnock report (1984) which led to the HFE Act of 1990 said that the human embryo had a ‘special status’, but from these figures it is evident that the human embryo in practice has no status at all.

It is true that IVF and related techniques have led to many childless couples being able to have children. But the figures demonstrate that a large proportion of the embryos which have been created in British laboratories in the last 20 years are not even given a chance to live. It is right to seek treatments for infertility but we cannot and must not allow the end to justify the means. And we must be pursuing infertility treatments which respect the humanity of the human embryo.

We should also be promoting adoption.

In 2009, which is the last year for which I have adoption figures, there 203,444 abortions on UK residents and just 91 adoptions involving babies under one year. 91!

That’s a ratio of 2,235 abortions performed for every baby adopted. 

And yet when Martin Narey, the adoption czar, suggested in 2011 that adoption was a ‘golden option’ and a real alternative to abortion he faced howls of derision from the politically correct.

Baby adoption is a win-win option because it provides an unwanted baby with a loving home and a childless couple with a baby to love and care for.

We know that abortion kills babies. But it also hurts women.

I first came face to face with the hurt caused women when I was training as a general surgeon in New Zealand.

I was on acute call and was asked to see a 14 year old girl with abdominal pain.  Her GP wondered if she had appendicitis but it was very clear on examining her that she did not need surgery.

I asked her if she had had any abortions or miscarriages and she looked very uncomfortable and glanced awkwardly at her father who was in the cubicle. So I asked her again later when he was no longer present and she burst into tears.

It turned out that she had become pregnant to her 15 year old boyfriend and that her father had threatened her that if she did not have an abortion he would take her boyfriend to court for carnal knowledge. So, wanting to protect her boyfriend from prosecution, she reluctantly consented.

She then told me that she had been plagued with guilt over the abortion ever since, and was often tearful in class but unable to tell anyone why. ‘Whenever I think about the abortion I get this pain in my tummy that I have now’, she said. ‘You are the first person that I have ever told about it and I don’t know what to do.’

We hear a lot about choice from the pro-abortion lobby but the reality for many women, like this poor girl, is that they feel they have no choice. They choose an abortion to protect other people – parents, boyfriends, spouses – because they don’t want to create a burden for others. Sometimes, as in this tragic case, they are threatened and coerced to have an abortion against their will.

There are some wonderful initiatives in the UK offering support to pregnant women in crisis – food, money, emotional support, counselling and antenatal care -  they are doing a fantastic job and need our strongest support.

This young lady was the tip of a huge iceberg of women damaged by abortion – many of them suffer from guilt and grief – but many also have physical complications – bleeding, infections, mental health problems.  

There are over 70 scientific studies now showing a link between abortion and premature birth in subsequent pregnancies. And there is an ongoing debate about the link between abortion and breast cancer – of three major scientific meta-analyses – studies of studies – two support a link.

Abortion kills babies and hurts women. And it is also driven by powerful commercial interests. 68% of abortions are now carried out by independent facilities like BPAS and Marie Stopes but are fully funded by the British taxpayer.

Abortion also has huge demographic effects.

We know that because of female feticide in China and India there are now 160 million missing women in the world. This means that many men face no possibility of ever finding a female partner and this alone has had a huge effect in fuelling sexual abuse, pornography and human trafficking.

Abortion in Russia - there were at one point two abortions for every live birth - led to such a shortage of young people that Vladimir Putin sought to tighten the abortion laws and provide financial incentives to women to keep their babies.

He was worried that there would not be enough people in the working population to support the growing number of elderly people.

In Japan in 1950 35% of people were under the age of 15 and 5% were over the age of 65. This is a healthy demographic which ensures that families and strong and that vulnerable people are well provided for.

By 2050 the figures will be reversed - only 8% will be under 15 and 40% will be over 65. This is an extremely unhealthy demographic which places more pressure on families and resources. Add in unemployment, economic recession and family breakdown and you have a very toxic brew indeed. 

We see a similar pattern all over the Western world – fewer children, growing numbers of elderly people, growing debt and family breakdown.

This has led some commentators to make the chilling prediction that the generation that killed its children through abortion – will in turn be killed by its children – through euthanasia.

Vulnerable elderly, sick and disabled people are at great risk from the advance of legalised euthanasia.

Euthanasia is now legal in Belgium, Luxembourg, the Netherlands and Canada. Assisted suicide – euthanasia one step back – is legal in Switzerland and in five US states – the latest being California. It is said that what California does today the world does tomorrow.

The Democrat Party is working hand in glove with Compassion and Choices – the pro-assisted suicide pressure group – to legalise assisted suicide in the US state by state. When they capture enough states they will go for a Supreme Court case to impose it everywhere – as happened with the Roe vs Wade judgement on abortion in 1973 and the Obergefell judgement for same sex marriage in 2014.

In the UK since 1992 we have been fighting the legalisation of euthanasia and assisted suicide. We have been amazingly successful in both parliament and the courts.

There have been over a dozen attempts to legalise assisted suicide through British parliaments in the last twelve years. Every single one of them has spectacularly failed. Our biggest victories ever were over the Harvie Bill in Scotland and the Marris Bill in Westminster just last year. Marris’s Bill, which supposedly had more safeguards than any bill in history was defeated by a massive 330 votes to 118 with only the Green Party supporting it.

MPs from all sides of the house were convinced by the arguments that the bill was not safe. 

Vulnerable people would inevitably have been put under pressure to choose early death so as not to be an emotional and financial burden on families and carers. MPs saw that the right to die can so easily become the duty to die.

We have seen this worked out across the North Sea. In the Netherlands euthanasia numbers have increased by between 10 and 20% every year so that now over 4% of all deaths are due to euthanasia. What started with the terminally ill has now spread to the chronically ill. What started with physical illness has spread to those with dementia and mental health problems. What started with adults now involves children. Euthanasia is legal for twelve year olds and babies with disabilities are being euthanised under the Groningen protocol.

In Belgium they are practising organ donation euthanasia. Half of Belgium’s euthanasia nurses have killed without consent even though both nurse euthanasia and involuntary euthanasia are illegal. But a third of cases in Belgium are now involuntary and yet there has been not one conviction. We should have learnt the lessons from abortion.

Euthanasia and assisted suicide cannot be controlled. Once you legalise it for some there will inevitably be incremental extension as more cases which stretch the legal boundaries are brought to bear.

It’s only for the terminally ill we hear. It’s only for adults. It’s only for those unbearably suffering. No. It is clear from what we see now in other jurisdictions that it is only the beginning. 

We have shown in Britain how this can be fought. We have shown that when people of faith and no faith, when disabled people and able bodied people stand together and marshal strong arguments we can win. We have proved that with assisted suicide. But the issue will not go away and we can only keep on winning and push back if we win the battle for the hearts and minds of the next generation.

This is why the work of the Alliance of Prolife Students is so crucial and why their vision to build, support and connect prolife societies in universities is so important.

They are in a unique position to equip students with up to date prolife education and resources. They have a unique mission to build pro-life communities in the universities and other tertiary instructions of England, Wales and Scotland.

They need to build on their success and momentum of the past few years and take their movement to the next level.

They must not be intimidated. It will need courage, good leadership and resources – both human and financial. And they will need our support to stand alongside us and to help fulfil their vision of a society where the value of human life is always affirmed, a society free from unethical practices in science and medicine.

Let me close by telling you the story of another 15 year old girl who into my care after a road traffic accident. I was up all night putting her broken limbs back together. The next day the nurses did a pregnancy test and found she was pregnant. They arranged for her to have an abortion.

I didn’t find out until after she had left the hospital. So I wrote her a letter. I told her that I understood that she must feel desperate. But I urged her to think again. I said that abortion may seem like the only way out in a crisis pregnancy but that it only exchanges one problem for a whole set of new problems. I said she had three choices – abortion, adoption or keeping the baby – and that anyone of them would change her life for ever. I offered to help her in any way I could.

She came back to the fracture clinic six weeks later. Whilst I was reviewing her x-rays she was on the edge of her chair wanting to tell me something.  Eventually, she could hold it in no longer and blurted out, ‘I’m keeping the baby. I just wanted you to know. Thank you for your letter. I showed it to my gran and she said she would support me. My boyfriend did too. I’m keeping the baby.’

Two years later I received a card in the post. When I opened it, out fell the picture of a little boy. There was a note which said, ‘You probably don’t remember me but I was the pregnant girl who broke her leg that you operated on in hospital. I just want to thank you for helping me avoid making what would have been the worst decision of my whole life. This is my son. He is my pride and joy. I wanted you to have this picture. Thank you so much.’

I know it was not an easy decision for her. But I’m sure that in choosing life she made the best decision – both for her and for her little boy, and for her whole family: because life affirming decisions are always the best decisions.

We need to stand for life. We need to resist the culture of death. We need to be a voice for those who have no voice whether they are embryos, elderly or disabled people or preborn babies.

We need to be trained. We need to put in the hours to know the arguments and produce the resources. Overall we need to be willing make a stand and be courageous. We must not allow ourselves to be silenced or intimidated. The battle will not be easy but we need to stand together and fight it. And we need to equip the next generation of prolife soldiers to take the baton from us.

That is why the work of the Alliance of Prolife Students is so important. I urge you to support them.  

Thank you.

For a video of this talk, and opportunities to give to the Alliance of Pro-Life Students, please visit their website