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to the UK, where on 30 July 2018, the British Supreme Court made a landmark decision, that food and fluids can be withdrawn from patients with PDOC provided that both doctors and relatives agree it is in a given patient’s ‘best interests’.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

Organ donation opt out plans in England – not nearly as clear cut as it might seem

All adults in England will be presumed to be organ donors unless they have explicitly opted out, the government has announced.

The new plans follow a public consultation launched last December. Wales has had a similar opt-out system since 2015 and Scotland also plans to introduce one.

New legislation which will be introduced in parliament this autumn is intended to come into effect in spring 2020 giving people a 12-month transition period to make decisions about organ donation preferences.

According to the BBC, ‘Max's Law’ is named after Max Johnson, from Cheshire, who was saved by a heart transplant.

His search for a suitable heart was followed in a series of front-page stories in the Daily Mirror, as the newspaper campaigned for the change in the law.

Last year, Prime Minister Theresa May wrote to the ten-year-old, saying she chose the name after she heard his ‘inspirational story’.

Groups excluded from ‘presumed consent’ will include under 18s, people lacking the mental capacity to understand the changes, and people who have not lived in England for at least twelve months before their death.

People who do not wish to donate their organs will be able to record their decision on the NHS Organ Donor Register, by calling a helpline, visiting the NHS Blood and Transplant website or on a new NHS app.  

If people do not opt out they will be considered to be a potential organ donor but donation will not proceed if the family ‘objects strongly’.

A clear-cut case?

About 17,000 people responded to the government consultation. Of these, 72% said that the proposed change in the law would make no difference to their decision about organ donation. 13% said that the change would make them opt in, while 15% of respondents said that they would opt out.

Around 5,100 people in England were waiting for a transplant at the end of March 2018 but although 80% of people in England would consider donating only 37% have so far signed up.

The government claim that the new plans will result in an extra 700 organ transplants taking place every year in England.

The Royal College of Physicians, Kidney Care UK and the British Heart Foundation all back the proposals along with the British Medical Association.

It is therefore understandable that media coverage of the plans has been overwhelmingly favourable – so why do I have reservations?

Simply because, as the CMF advocacy team have argued many times before (see here, here, here, here and here)  the case for an opt-out system for organ donation is not nearly as clear cut as it might seem.

Marginalised voices

First, there is lots of opposition from authoritative voices who are now being marginalised in the rush to embrace it.

Professor John Fabre, former President of the British Transplantation Society, has led a chorus of critics warning that the evidence shows an opt-out approach is counter-productive.

Speaking to BBC Radio 4, Prof Fabre said it could be predicted ‘with a high level of certainty that it is not going to increase donor numbers in the way that we all want’.

Former National Clinical Director for Transplantation Professor Chris Rudge has said: ‘The only evidence I have seen is that it won’t make any difference and it is not the answer to the problem, but there is a risk that it may make things worse.’

Hugh Whittall, Director of the Nuffield Council on Bioethics, said he was concerned that the Government was asking how the law should be changed, rather than if it should be.

Keith Rigg, consultant transplant surgeon at Nottingham University Hospitals NHS Trust, felt that full results from Wales should be studied before such a move was considered in England.

These authorities have reservations because there is no clear evidence that opt-out actually works in increasing organ donation rates.

Lack of evidence

Before implementing an opt-out system, Fabre said, it is important to ask: ‘Does it actually make a difference?’ He concluded: ‘It actually doesn’t’.

Rigg again: ‘There is no clear evidence that this has resulted in an increase in organ donations and transplants where it has been introduced.’

Whittall: ‘The government should not be making this change until there is evidence that it works, and until we are confident that it won’t undermine people’s trust in the system in the long-term.’

In a September 2017 review, the BBC reported: ‘In Wales, where an opt-out system was introduced in December 2015, there has actually been a small dip in the number of deceased donors, from 64 in 2015-16 to 61 in 2016-17. This resulted in a drop in organ transplants from 214 to 187 respectively.

This is not to say the opt-out scheme is having a negative effect - some fluctuation is to be expected - but so far, despite the claims, we don't have any evidence that it is having a positive effect.’

Opt-out schemes don't consistently translate to increased organ donor rates. In Sweden, such a scheme has been in force since 1996 but it remains one of the lowest-ranked countries for organ donation in Europe. Luxembourg and Bulgaria also have opt-out systems and low rates of organ donation.

In France and Brazil, variations on a ‘presumed consent’ system actually led to a decline in the rate of organ donation.

A better way

Spain is often cited as an opt-out scheme success story.

‘Presumed consent’ legislation was passed in 1979 but donor rates only began to go up ten years later when a new national transplant organisation was founded which co-ordinates the whole donation and transplantation process.

In other words, it was not opt-out but rather other changes, like better infrastructure, more funding for transplant programmes and more staff working to identify and build relationships with potential donors before their death that really made the difference.

As Rafael Matesanz, an expert on the Spanish situation has recently argued: ‘Spaniards consider insignificant the impact of the type of consent on the donation activity. To the contrary, infrastructure, organization around the process of deceased donation, and continuous innovation are deemed the  keys for success… it was not until ten years after the (opt-out) Law approval that donation took off.’

In September the Nuffield Council on Bioethics confirmed that the evidence for introducing presumed consent is absent and highlighted instead the alternative option of investing more in Special Organ Donation Nurses. Where specialist nurses are available to speak to the family of the deceased they either donate or authorise donation in 68% of cases. Where they are absent the figure is just 27%.

Counterproductive

The positive spins on the impact of presumed consent also ignore the implications of people signing the opt-out register.  During 2016-17, 174,886 people in Wales, around 6% of the population, were signed up to the opt-out register. In the first two quarters of 2017-2018 this increased to 178,062.

This means that nearly 175,000 people have now effectively been removed from being possible donors when previously their families, as their living representatives, might have been happy to donate organs at their death, in the absence of express direction to do otherwise.  

The potential for presumed consent to alienate people, precipitating withdrawal from the donation system is real. In giving oral evidence to the National Assembly Health and Social Care Committee in Wales, organ transplant specialist Dr Peter Matthews, who was based in Morriston Hospital in Swansea, made the following statement:

‘My own experience is that the British psyche has a particular view that what it should do is donate organs as an altruistic gift, and if it is felt that the state is going to take over the organs, then there is the potential that people who may have been willing to become a donor will not do so. We have seen two cases in Morriston where patients who were on the organ donation register, on hearing about this, said to their families that if the state was going to take their organs, they were no longer willing to give them. We lost two donations because of that. So, there is a potential backlash.’

Organ donation should be a gift

This underlines the fact that organ donation should be an altruistic gift. Opt-out is not ‘presumed consent’ because no consent has been given.

Consent which is presumed is not actually consent at all. It amounts rather to the body after death becoming the property of the state and the state taking organs rather than the donors or their families giving them.

At a time when so much emphasis is placed on autonomy and free choice, this runs in the opposite direction. I’ve looked at this in more detail here.

Costly

In their 2008 report ‘The potential impact of an opt out system for organ donation in the UK’ the Organ Donation Taskforce looked at the costs for introducing a UK wide system of presumed consent.

They estimated that the cost of doing so would be ‘approximately £45 million in set up costs for IT and communications. There would be £2 million per year in IT running costs and an additional £5 million every few years to refresh public messages.’

Ths money would be far better spent employing trained specialist nurses in organ donation and developing an infrastructure like that of Spain.

Too many unanswered questions

There are simply too many unanswered questions about the opt-out system to be going precipitously down this road. 

There are strong voices against it because there is no evidence it will work, better ways forward exist, its coercive nature risks alienating potential donors, it undermines the idea of donation as a gift and it will be very costly to implement.

It seems that the government is ignoring the facts in its haste for a headline win based on ideology rather than facts. They should think again and refrain from whipping their uninformed MPs through the lobbies to force opt-out onto the statute books.

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. 

Supreme Court rules that doctors can remove food and fluids from brain-damaged patients without going to court

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 giving her judgement, Lady Black (pictured above), 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.

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.

Ireland votes to legalise abortion – a desperately sad day

On Friday 25 May 2018 Irish voters backed the legalisation of abortion by a majority of two to one in a national referendum.

The vote repeals the Eighth Amendment of the Constitution — a 1983 measure that conferred equal rights on the baby and the mother, making abortion legal only to save the life of the mother.

The national vote was 66.4% to 33.6% with only one of 40 constituencies, Donegal, voting against it and support was highest amongst urban women under 25, 90% of whom backed it.

Before the referendum, the government had pledged to pass legislation by the end of the year to allow unrestricted terminations up to 12 weeks (see picture), and between 12 and 24 weeks to protect the mother’s health, if the amendment was set aside.

The Eighth Amendment to Ireland’s constitution, or Article 40.3.3, ‘acknowledges the right to life of the unborn and, with due regard to the equal right to life of the mother, guarantees in its laws to respect, and, as far as practicable, by its laws to defend and vindicate that right’.

In other words, it treats the life of the mother and baby as equal. From now on that will no longer be so and babies up until 12 weeks will be able to be 'terminated' with impunity.

Ireland’s abortion law will thereby become more liberal that than in Britain which allows abortion only on medical grounds specified under the Abortion Act 1967, even though this law is largely flouted. 

Currently in Britain 98% of abortions are carried out on mental health grounds, when there is in fact no evidence to suggest that continuing a pregnancy poses any greater risk to a mother’s mental health than abortion.

Abortion is not healthcare - it treats no illness and offers no healthcare benefit and remains against the Hippocratic Oath. It is, at the end of the day, just killing.

What can we expect now in Ireland?

In 2016 3,265 Irish women travelled to England and Wales to have abortions. But once it is legal in Ireland the number of abortions in that country is expected to rise to 13,000 per year given abortion rates in Britain.

In 2016 in England and Wales, there were 696,271 live births and 185,596 abortions. That means over 1 in 5 pregnancies ends in abortion.

There have been over 9 million abortions in England and Wales since 1967 – an astonishing number equivalent to one and a half times the number of Jews who died in the Nazi holocaust. In fact, there are 43 million abortions every year around the world - almost one in two human deaths involving a doctor or other healthcare worker ending the life of an unborn baby.

Also 92% of all abortions in England and Wales are carried out under 13 weeks, so it is likely that a similar percentage will qualify in Ireland.

Today’s vote will leave Northern Ireland as the only place in the British Isles where abortion remains largely illegal.

Last year it was confirmed that there are 100,000 people alive in NI today because of the current law.

The right to life is the most fundamental of all rights and all other rights depend on it. Every individual human life begins at fertilisation and every abortion stops a beating heart.

But the Irish vote has confirmed that two thirds of voters there do not consider that life before birth has equal value to life after birth.

In other words, they believe that it is legitimate to treat babies before birth differently to those after birth – on the basis of their age, size, dependency and mental capacity.

This is profoundly discriminatory but is being advanced ironically on grounds of equality, diversity and tolerance.

That it has been welcomed by most Irish is a stunning judgement on just how far the country has slid in the last 40 years.

But the roots go back to the sexual revolution and the widespread acceptance of sex outside marriage - it is also stark witness to the ineffectiveness of free contraception in preventing conception and the legacy of believing that people who are not willing or ready to be parents should be having sex.

Ireland, having held out for some decades against the rest of the so-called developed world, has now joined the pack with a vengeance. A society will always be judged on how it treats its weakest members. Women are not the victims here.

It is a desperately sad day for Ireland. The fight for the unborn will go on, but it has just been made a whole lot harder.  

Alfie Evans has a progressive incurable illness but his parents should not be stopped from doing what they believe is best for him

Hear my Premier Radio interview on this case here .Alfie died at 0230 on Saturday 28 April, just over 24 hours after this post was written.

Alfie Evans was admitted to Alder Hey Hospital, Liverpool in December 2016 suffering from seizures. He was found to have a (still undiagnosed) progressive neurodegenerative disease and has now been in a semi-vegetative state for more than a year. During that time, he has been on a ventilator in the critical care unit.

Alder Hey NHS Trust went to the High Court last year to seek a declaration that continued ventilator support was not in Alfie’s ‘best interests’. They claimed that scans showed ‘catastrophic degradation of his brain tissue’ and that further treatment was not only ‘futile’ but also ‘unkind and inhumane’.

But his parents disagreed and wanted permission to fly him to the Bambino Gesu Hospital in Rome in the hope of prolonging his life.

On 20 February, High Court Judge Mr Justice Hayden said doctors could stop providing life support for Alfie against his parents' wishes, saying the toddler required ‘peace, quiet and privacy’. A lengthy legal battle ensued with the eventual result that Alfie was taken off the ventilator on Monday 23 April.

At the time of writing, over 60 hours later, he is still alive breathing spontaneously on oxygen.

The Italian Ministry of Foreign Affairs had previously granted 23-month-old Alfie Italian citizenship, hoping it would allow an ‘immediate transfer to Italy’ but Hayden, who stated that ‘Alfie is a British citizen’ and ‘falls therefore under the jurisdiction of the High Court’, ruled that he could not go. This judgement was upheld on 25 April by three judges at the Court of Appeal.

The case has understandably generated international media interest, intense emotion and accusations on both sides with the medical staff, judiciary, Alfie's parents and supporters and his legal team all coming in for criticism from various quarters.

Everyone has an opinion, which makes me all the more reluctant to offer mine. I do so now only because I have spent much of yesterday refusing requests to go on adversarial media debates but at the same time having to answer questions from church members, CMF members, leaders of other organisations all over Europe and concerned members of the public who are wanting to know what to think and are deeply concerned about the tone of public discussions. Some of this criticism on both sides, from both media and public, has been particularly vicious and is to my mind inexcusable in what is a deeply complex and difficult case.

In doing so my heart first goes out in particular to Alfie's parents and the medical staff who have cared for him for so long to the best of their ability under the glare of the media spotlight.

I think there are two key questions with this case  – ‘What is the best way of managing Alfie?’ and ‘Who should ultimately decide what treatment he has?’

They need to be considered separately. 

‘What is the best way of managing Alfie?

Alfie has incurable progressive brain damage which will eventually kill him. So, any treatment is only going to be supportive or palliative at best. However, it is not immediately apparent how long he might live either on, or off, a ventilator.

There is an important ethical difference between the active ending of life and the withdrawal of treatment. The former, I believe, is always wrong, whereas the latter is sometimes wrong and sometimes right depending on the clinical circumstances.

It is not always wrong to withdraw or withhold treatment. Sometimes, when death is imminent and inevitable and the burden of the treatment outweighs any benefit it gives, it can be good medicine. 

There is a point when we say enough is enough. Similarly, we are not obliged to give every treatment to every patient just because those treatments exist. Doctors are making decisions to withhold or withdraw treatments of various kinds every day.

But these decisions must be made on grounds that the treatment is not worth giving, not that the patient is not worth treating – that the treatment is futile, or that it does more harm than good, rather than that the life is futile. Doctors are obliged to make judgements about the qualities of treatments, but not about the quality of lives. It is therefore sometimes appropriate and ethically defensible to turn off a ventilator in some cases of severe brain damage, just as it is appropriate in other situations to withdraw or withhold drug treatments or surgery.

But, when invasive treatments like ventilators are withheld or withdrawn, basic care including food and fluids (clinically assisted nutrition and hydration), oxygen and symptom relief should continue as it has with Alfie. The fact that Alfie is still breathing after almost 72 hours does not mean that his brain is not severely damaged, only that there is enough function in his brain stem (the respiratory centre) for him to continue the unconscious process of breathing. It does not mean that he is beginning a miraculous recovery, only that his brain stem is currently less badly damaged than his doctors thought.

I am not here making a judgement about whether it was clinically appropriate to stop Alfie’s ventilator as I am not privy to the full clinical details, but Alfie’s doctors clearly felt that it was and made this decision in good faith believing that Alfie was suffering and that the ventilation was providing more burden than benefit.

Other doctors might, and indeed have, disagreed with this conclusion, which tells us at very least that it is not a straightforward assessment.  Personally, I don't share the view of the court that to keep Alfie on a ventilator is inhumane. If he is deeply unconscious and effectively insensate, then he will not by definition be suffering. On the other hand, the ventilator appears to be simply extending his life rather than improving his underlying brain damage, which is getting steadily worse.

Who should ultimately decide what treatment Alfie has?  

One of the dilemmas Alfie's case has raised is whether doctors or judges are the right people to determine whether withdrawing life-support treatment is in the ‘best interests’ of a terminally ill child. Should they be able to overrule parents?

Under UK law the rights of parents are not absolute. The 1989 Children's Act makes it clear that where a child is at risk of harm the state can and should intervene and the court in this case chose to overrule the parents.

It is this that has fuelled the greatest resentment and criticism.

I am not saying that ventilating Alfie was helping him (in terms of improving his condition) but equally I find it hard to see how it was harming him. His doctors may not agree with me and are entitled to their professional opinions. They might equally have argued with some justification (but have chosen not to) that there were other patients more likely to benefit from continued ventilation than Alfie who might have had a greater call on the equipment.

Doctors, of course, like parents, are moral agents and should not be forced to do something they believe is clinically inappropriate or even morally wrong. But Alfie’s parents, in seeking a second opinion elsewhere for their child, are similarly doing what they believe is best for him, even if they are clinging to false hope.

No one is suggesting that they are deliberately doing what they know is not in Alfie’s best interests or that they are incapable of seeking help for him. 

Overriding parental responsibility should only be contemplated when a parent is harming a child deliberately or out of ignorance, or failing to care for it adequately. But none of these things apply in this case.

So, I do not see why Alfie’s parents should not be allowed to do what they believe is in the best interests of their son, even if it makes no difference to the eventual outcome of his illness. They are his parents after all.

Based on the clinical details that are in the public domain, it seems most likely that Alfie will continue his downward trajectory and die, but if his parents wish to try other treatment options and there are others who are prepared both to take on his treatment and also to pay for it, then the hospital and the courts should not stand in their way.

In doing so they risk appearing paternalistic and controlling and thereby doing huge damage to their own, and our country’s, reputation. 

When a doctor or judge in good faith opts not to treat a child because he believes it is not right or appropriate to do so he (or she) should be respected in that professional judgement.

But he should not be able to stand in the way of a second opinion being sought by the child's equally committed parents.

I am not suggesting by this that Alfie's decline is in any way reversible. This is a progressive, terminal condition. But different doctors (both in the UK and abroad) will have different views about whether or not to restart ventilation, how long if so to continue it, and what specific elements of supportive and palliative care to employ.