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to the UK, where on 30 July 2018, the British Supreme Court made a landmark decision, that food and fluids can be withdrawn from patients with PDOC provided that both doctors and relatives agree it is in a given patient’s ‘best interests’.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

Supreme Court to rule on whether doctors can remove food and fluids from brain-damaged patients without going to court

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

The answer to these questions has changed dramatically as a result of recent decisions by the Court of Protection which are due to be appealed in the Supreme Court on 29 January 2018.

The case of Tony Bland in 1993 (who was in a permanent vegetative state (PVS) after being injured at the Hillsborough Stadium Disaster) established that clinically assisted nutrition and hydration (CANH) is a form of medical treatment that can be withdrawn in some circumstances.

In that case it was also held that, in England and Wales, prior court approval should be sought for the withdrawal of CANH in all such cases. This now also applies for patients in minimally conscious state (MCS).

A vegetative state is when a person is awake but is showing no signs of awareness; they may open their eyes, wake up and fall asleep at regular intervals and have basic reflexes; they're also able to regulate their heartbeat and breathing without assistance.

A person in a vegetative state doesn't show any meaningful responses, such as following an object with their eyes or responding to voices; they also show no signs of experiencing emotions.

Permanent vegetative state (PVS) is diagnosed if these features persist for more than six months if caused by a non-traumatic brain injury, or more than 12 months if caused by a traumatic brain injury. If a person is diagnosed as being in PVS, recovery is extremely unlikely but not impossible.

By contrast, somebody in a minimally conscious state (MCS) shows clear but minimal or inconsistent awareness and may have periods where they can communicate or respond to commands, such as moving a finger when asked.

Prof Derick Wade is one of the country's leading experts in this area, a consultant in neurological rehabilitation based in Oxford. He estimates there could be as many as 24,000 patients in the NHS in England either in a permanent vegetative state, or minimally conscious.

Patients with PVS and MCS are severely brain-damaged but they are not imminently dying and with good care can live for many years. But if CANH is withdrawn, then they will die from dehydration and starvation within two or three weeks.

In such cases, doctors can withhold food and liquid - if they consider there's no likelihood of improvement, and if the family agree. But to do that, they need to wait - six months for cases with brain injury caused by disease or a year in cases of traumatic injury (see diagnostic guidelines here).

Then the patient has to be assessed by a specialist unit, before being diagnosed as being in PVS or MCS. Then, the procedure is to seek permission from the Court of Protection to take out their feeding tube.

The applications are made by the local Clinical Commissioning Group (CCG) and usually cost around £50,000. Only about 100 such applications have been made in more than 20 years.

Two recent legal judgments have held that there is no requirement for treating clinicians to seek the court’s prior approval to withdrawing CANH for a patient in PVS or MCS where existing professional clinical guidance has been followed and where the treating team and those close to the patient are all in agreement that it is not in the patient’s ‘best interests’ to continue such treatment.

The Official Solicitor is contesting the second of these two judgements in the Supreme Court.

The first case concerned M, a woman who had suffered from Huntington's disease for 20 years and was now in MCS.  It was argued that it was in M's best interests not to continue to receive clinically assisted nutrition and hydration (CANH), with the consequence that she would die. 

The application was supported by M’s family, her clinicians, and an external specialist second opinion. At a public hearing on 22 June, Justice Peter Jackson made the orders requested, giving short reasons and reserving fuller judgment. On 24 July, CANH was withdrawn from M, who then received palliative care, and on 4 August she died. She was 50 years old at the time of her death. 

In his fuller judgement on the case on 20 September, which was widely reported in the press (see Guardian and Telegraph), Mr Justice Jackson said in future judges should not be required to make rulings in similar cases - where relatives and doctors were in agreement and medical guidelines had been followed.

The second case involved a 52-year-old man (Y), married with two adult children who in June 2017, suffered a cardiac arrest after a myocardial infarction (heart attack) as a result of coronary heart disease. It had not been possible to resuscitate him for well over ten minutes, resulting in severe cerebral hypoxia and causing extensive brain damage (See Guardian, Times (£) and full judgement (£)).

Mr Y had been in a prolonged disorder of consciousness since his cardiac arrest and, in July, was admitted to a regional hyper-acute rehabilitation unit under the control of the claimant NHS Trust. 

Two medical experts with extensive qualifications and experience in the field of neurological rehabilitation agreed that Mr Y was in a very low level of responsiveness, he had no awareness of self or his environment, and it was highly improbable that he would re-emerge into consciousness.

The clinical team and Mr Y's family, including his wife, Mrs Y, agreed that it would be in his best interests for clinically assisted nutrition and hydration (CANH) to be withdrawn, with the consequence that he would die within a period of two to three weeks.

The NHS Trust sought a declaration that there was no mandatory requirement to seek consent from the court to the withdrawal of CANH, which the court had upheld. However, the Official Solicitor has appealed this decision and, as noted above, the Supreme Court hearing is expected to take place on 29 January.

I was asked to comment at the time of the first hearing on 20 September and my words were later picked up by Life Site News.

I said that the court decision had set a dangerous precedent and should be appealed. Taking these decisions away from the Court of Protection removes an important layer of legislative scrutiny and accountability and effectively weakens the law.

This 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.

I think that the key issues legally and ethically separating right and wrong in end of life decisions are:

1.   What is the intention of this particular action or omission?

2.   We can say a treatment is futile (ie burden outweighs benefit measured in terms of cure/relief) but not that a life is futile

It seems to me that these recent decisions have been made with the intention of ending the life of a person who is not imminently dying because their life has been judged futile. This is a very dangerous precedent indeed.

Furthermore, there are still significant uncertainties about diagnosis and prognosis in both PVS and MCS. These have increased rather than decreased since the Bland case and this is why continued court endorsement of the withdrawal of life-sustaining nutrition and hydration in such cases is necessary. Well-intentioned people - relatives, carers and clinicians - often make mistakes about diagnosis/prognosis and accordingly, agreement between all of them about withdrawal of CANH is not adequate protection.

Life Site News noted that whilst starvation and dehydration certainly hasten death, this is not a painless procedure. In 2006, a British euthanasia activist gave up her own freely chosen attempt to starve to death after 19 days, saying it was too painful. ‘I would not wish what I have been going through on my worst enemy,’ Kelly Taylor said.

At the moment, because of the current policy of involving the court in all such cases, the number of cases we see are very few (fewer than 100 in over 20 years as noted above). But if the court were to be removed from the equation, this could very well lead to a huge escalation of cases, given how many people in Britain have either PVS or MCS.

Doctors are already moving in this direction as a recent article in the Journal of Medical Ethics argues. Furthermore, in the light of these recent court decisions, new interim guidance for health professionals in England and Wales has been issued by the BMA, Royal College of Physicians (RCP) and General Medical Council (GMC). They plan to publish new definitive guidance in May 2018 which will make this new direction official.

In their interim guidance they note however that it 'may need revision if a case concerning these issues is considered by the Supreme Court'.

This is now happening and we await the hearing with great interest. 

BBC Panorama findings will heighten calls for review of Tony Bland judgement

Tuesday night’s BBC Panorama told the story of a Canadian man who was believed to have been in a vegetative state for more than a decade, being able to tell scientists that he was not in any pain.

According to BBC health correspondent Fergus Walsh (pictured), it's the first time an uncommunicative, severely brain-injured patient has been able to give answers clinically relevant to their care. He writes:

‘Scott Routley, 39, was asked questions while having his brain activity scanned in an fMRI machine. His doctor says the discovery means medical textbooks will need rewriting.

Vegetative patients emerge from a coma into a condition where they have periods awake, with their eyes open, but have no perception of themselves or the outside world.

Mr Routley suffered a severe brain injury in a car accident 12 years ago.

None of his physical assessments since then have shown any sign of awareness, or ability to communicate but the British neuroscientist Prof Adrian Owen - who led the team at the Brain and Mind Institute, University of Western Ontario - said Mr Routley was clearly not vegetative.

"Scott has been able to show he has a conscious, thinking mind. We have scanned him several times and his pattern of brain activity shows he is clearly choosing to answer our questions. We believe he knows who and where he is."

Prof Owen said it was a groundbreaking moment.’

In a second article on the BBC website Walsh raises questions about the current law which allows vegetative patients to have food and fluids withdrawn after a court order:

‘The case is important because in the past two decades, more than 40 vegetative patients have been allowed to die after High Court judges approved the withdrawal of feeding tubes.

This followed a landmark case involving the young Hillsborough victim Tony Bland,
who was crushed in the stadium disaster in 1989, suffering terrible brain damage which left him in a vegetative state.

Before any judge decides to sanction the withdrawal of treatment, a thorough behavioural assessment is ordered. But they do not ask for brain scans of the type used by neuroscientists in Cambridge and Ontario to search for hidden awareness.

It is possible that may eventually change.

Much will depend on the view of the working party of the Royal College of Physicians which has been reviewing the College's 2003 guidelines on low awareness states.’

People with so-called persistent vegetative state (PVS) may live for ten, twenty or thirty years – in fact the record survival is more than forty.

But since the Tony Bland judgement (picture) in 1992, in which the Law Lords ruled that a young man’s nasogastric feeding tube could be removed with the intention of ending his life, it has been possible in Britain to apply to the courts to withdraw hydration and nutrition from people who are severely brain-damaged but not dying.

But this is possible only for those in PVS and does not apply to other less serious brain damage.

There are estimated to be between 1,000 and 5,000 patients with PVS in Britain today, but so far only 43 have died after court rulings allowing feeding tubes to be removed.

At the time of the Bland case Christian Medical Fellowship expressed serious misgivings about that judgment which we felt crossed a legal rubicon. Three of the reasons for our concern feature in the above account; three concepts embodied in the terms ‘in her best interests’ and ‘further treatment would be futile’.

These terms embrace three important legal precedents established by Bland.

The first precedent is that nutrition and hydration constitute treatment. Our argument was that they constitute rather basic human needs that all of us share. Treatments are aimed at reducing or reversing the effects of an illness. But hydration and nutrition, like air, are simply essential requirements for life. Withdrawing all nutrition and hydration from any human being will result in death. But withdrawing a treatment will only result in the deaths of those who rely on that treatment to stay alive.

The second precedent is that having one’s life actively ended, when one is not actually dying, can be in a person’s best interests. But that is a philosophical position based on a particular world view. We can only make a judgment that death is in a person’s best interests by starting with a set of presuppositions about the nature of life, suffering, morality and death that lead to that conclusion. Our argument was that we have no right to decide what another person’s best interests are. Or alternatively that if we are in any doubt, then the benefit of the doubt should be in the direction of preserving life. Deciding for another person that it is in their best interests to have their life ended is a very dangerous precedent indeed, especially if that person is unable to express an opinion on the matter.

The third precedent is that providing basic care to a person with PVS would be futile. But nutrition and hydration has a real and measurable effect in that it stops a patient dying from dehydration and/or starvation. So how is it futile? It can only be so if a patient’s continued existence itself is judged to be futile. Our argument was that whilst doctors are justified in deciding whether or not a treatment was futile – in that it had no measurable effect or imposed burdens disproportionate to any benefit – they have no right to make judgments about whether a patient’s life is futile.

The assumptions that nutrition and hydration constitute treatment rather than care, that being starved and dehydrated to death can be in a person’s best interests and that the lives of some people are futile are all false assumptions. They should never have been given legal force. But sadly they have.

Having said that it is important to stress that in 20 years since Bland, some thousands of PVS patients have died of natural causes. So the 43 cases that have been taken to court have been a very small minority. In other words, almost always, the intuitions of family and professional carers are that there is a person there with a worthwhile life, even more reason to toughen up the law.

The Bland judgment was seriously flawed and this new data about PVS patients having awareness will heighten calls for its review. Bland and the 43 others who have died after him should not have died in this way. Just how many of them were aware we will now never know. But regardless they should have been given basic care, including nutrition and hydration, until they died naturally.

'The Mind Reader: Unlocking My Voice' - a Panorama Special - will be broadcast on Tuesday 13 November at 22:35 on BBC One. Or catch up later on the BBC iPlayer using the link above.

People with severe dementia should be starved and dehydrated to death to save money says BMJ editorial

There is an editorial in the British Medical Journal this week by a retired professor of philosophy titled ‘Sanctity of life law has gone too far’.

Raanan Gillon (pictured) reviews the case of M, a woman in minimally conscious state, who was the subject of a court of protection ruling last year.

I have written about the case before on this site, both before and after the judgement, and spoke to the Telegraph about it earlier today so I won’t repeat all the details again here.

Essentially the judge decided that M’s feeding tube should not be removed as she did not have a valid and applicable advance directive in place. Instead he gave priority to preserving her life.

Gillon didn’t like the judgement for two reasons.

First he felt that the judge ‘did not accord “significant weight” to the patient’s previously expressed values, wishes, and views’. But in fact these were not sufficiently clear and in the absence of a clear statement of the patient’s wishes, Justice Baker was simply giving precedence to the preservation of life over uncertain autonomy.

Second, Gillon was unhappy that decisions about starting or stopping life prolonging treatment, including the withholding or withdrawal of artificial nutrition and hydration, for all incapacitated patients should be brought to the Court of Protection. But in so doing the judge was simply acting in accordance with precedent laid down in the Tony Bland case (involving a man in persistent vegetative state) and outlined in the Mental Capacity Act 2005.

Gillon’s real problem is that he doesn’t like the current law and considers that the lives of some seriously brain-damaged people are not worth living. He thinks that giving nutrition and hydration to people with severe brain damage or dementia is not beneficial and that they should have this basic care withdrawn and allowed to die.

His real reasons come out later in the editorial:

‘The logical implications of this judgment threaten to skew the delivery of severely resource limited healthcare services towards providing non-beneficial or minimally beneficial life prolonging treatments including artificial nutrition and hydration to thousands of severely demented patients whose families and friends believe they would not have wanted such treatment. The opportunity cost will probably be reduced provision of indisputably beneficial treatments to people who do want them.’

Now this statement is very interesting indeed as M was not actually demented, just seriously brain damaged. In addition she had some degree of residual brain function.

It is noteworthy that Gillon is very selective in his reporting of these facts and conveniently does not mention that M had some awareness of herself and her environment, some understanding of language, occasionally spoke, appeared to be able to appreciate some things that were said to her and responded to music. Although she regularly experienced pain, this was not constant or extreme, and her condition was stable. And unlike dementia patients, who are terminally ill, she had a non-progressive condition.

Gillon's suggestion, that severely demented and brain-damaged people should be sedated, starved and dehydrated to death on the basis of their friends and relatives vague and contradictory recollections of 'what they would have wanted' would create a most dangerous precedent and place us on a very slippery slope indeed.

His implication that we should be withholding nutrition and hydration from such people so that we can spend the money elsewhere is chilling and demonstrates precisely why we don't give doctors, politicians and most importantly philosophers (like Gillon!) the power and authority to make such decisions on utilitarian grounds.

People who are severely brain-damaged or suffering from dementia, but not imminently dying, should be given nutrition, hydration, symptom relief and warm human interaction until the day that they die peacefully and naturally.

We don’t kill them either by giving them lethal injections or dehydrating them to death and we ensure that there is adequate legal protection in place so that no one who has an interest in their deaths, whether financial or emotional or to get rid of an unwelcome care burden, should be able to exploit or harm them in any way.

The law is there primarily to protect vulnerable individuals from exploitation and abuse and as such it needs the strength to deter individuals and institutions who have something to gain, financially or otherwise, from another person's death.

It does not need changing and the involvement of the Court of Protection in difficult cases is a necessary and effective safeguard.

Judge rules in favour of life in M case – A review

(My review from Triple Helix winter 2011 out this week)

On 28 September the Court of Protection ruled in favour of life in the case of M, a 53 year old woman who suffered severe brain damage as a result of viral encephalitis in 2003.

M's sister and partner wanted artificial nutrition and hydration (ANH) given via a gastrostomy tube to be stopped with the explicit intention of ending her life. But the PCT caring for M and the Official Solicitor opposed them.

Since the 1993 Tony Bland decision, 43 patients with permanent vegetative state (PVS) have died following court rulings to remove ANH but M was the first case with minimally conscious state (MCS), the next step up from PVS, to come before the courts.

In his judgment (1) Justice Baker found that M had some awareness of herself and her environment, and some understanding of language. She occasionally spoke, appeared to be able to appreciate some things that were said to her, and responded to music. She regularly experienced pain, but this was not constant or extreme, and her condition was stable. The prospect of any significant improvement in the level of consciousness was remote. In reaching these findings he found, not surprisingly, that the carers who had daily contact with M had the greatest insight into her condition. It was their observations that squared most accurately with the more objective results from the 'Sensory Modality Assessment and Rehabilitation Technique' (SMART) and 'Wessex Head Injury Matrix' (WHIM) assessment tools.

The judge applied principles established by previous cases and affirmed by the Mental Capacity Act 2005 (MCA). ANH can only be removed if it is in the best interests of the patient (2) and the burden of establishing this rests on those who want it withdrawn. (3) In determining best interests a balance sheet approach is used, (4) but the assessment is holistic, including not just medical considerations, but also the patient's wishes, feelings, beliefs and values.

M had not given any indication before her injury about how she might like to be treated should she lose capacity. This meant that the deciding legal principle was the right to life. Justice Baker concluded: 'the principle of the right to life is simply stated but of the most profound importance. It needs no further elucidation. It carries very great weight in any balancing exercise.'

The decision was not surprising. The key problem enshrined in the MCA remains – it already allows legally binding advance refusals of ANH placing some vulnerable patients at risk – but this case has not taken us further down the slippery slope.

References

1. W v M and S and A NHS Primary Care Trust [2011] EWHC 2443 (Fam)
2. Airedale NHS Trust v Bland [1993] AC 789
3. R (Burke) v GMC [2005] QB 424
4. Re A (Male Sterilisation) [2000] 1 FLR 549

Two women in their 50s with serious brain damage whose relatives want them dead. One judge has said ‘yes’ but the other is still thinking. Why?

Two cases of women in their 50s with serious brain damage went before the courts this week.

Neither patient is dying, but both require 24 hour nursing care and are fed via by a tube. In both cases applications have been made to have hydration and nutrition withdrawn in order than they might die from dehydration and/or starvation.

In the first case the judge has already given the go-ahead to end the patient’s life. But in the second case, that involving a woman in the North of England referred to as ‘M’, which finishes its hearing on Monday, we will have to wait until 23 September for the judgement.

Why the difference? Well, it all relates to a subtle difference in diagnosis and the state of the law in Britain.

The first patient is in ‘permanent vegetative state’ (PVS), which means that she has been judged to have no awareness for over a year. Since the Bland ruling in 1993, it has been possible to apply to the High Court to have nutrition and hydration withdrawn from people with this condition. This woman will be the 44th such patient to die in this way after a court ruling.

The second woman, M, is in a ‘minimally conscious state’ (MCS), the next step up from PVS. In other words, she has some very limited awareness. Thus far, no court has ruled that such a patient can be starved and dehydrated to death. But the woman’s partner and sister nevertheless wish to go down this route.

The legal principles established in the Tony Bland case (pictured), who developed PVS following the Hillsborough disaster, were given statutory force in the Mental Capacity Act 2005, and apply in subsequent PVS cases. And they have not been overturned by the Human Rights Act.

Each case, however, is still required to go to court.

The Nursing Times this week ran the Press Association’s account of the first case referred to above (the PVS case), which I reproduce here:

The High Court has given a health trust permission to lawfully withdraw life-sustaining treatment from a woman in a permanent vegetative state.

Mr Justice Charles, sitting at the Court of Protection in London, ruled that stopping artificial nutrition and hydration would be in the best interests of the 54-year-old mother of four.

Members of her family, who the court heard were ‘entirely supportive’ of the application made by the trust responsible for her care, were present in court for the decision.

Following a ‘collapse’ in 2009, the woman, who cannot be identified for legal reasons, suffered ‘extensive hypoxic brain damage’.

The judge said the application by a NHS trust, which also cannot be named, was for a declaration ‘to render lawful’ the withdrawal of hydration, nutrition and medication for a heart condition.

He said: ‘The consequence of that is that very sadly the patient will die.’

The judge said he was ‘satisfied that appropriate testing and observations have been carried out by the appropriate qualified professionals’ over a significant period of time.

There was ‘convincing evidence from those who are nearest and dearest to her that there is nothing in her approach to life which would indicate that, if she were able to say something about it, she would not completely support what the family are asking me to do’.

He concluded: ‘In my judgment this patient has permanent extensive brain damage and is in a permanent vegetative state. Further treatment would be futile.’ The declaration sought was ‘in her best interests’.

At the time of the Bland case Christian Medical Fellowship expressed serious misgivings about that judgment which we felt crossed a legal rubicon. Three of the reasons for our concern feature in the above account; three concepts embodied in the terms ‘in her best interests’ and ‘further treatment would be futile’.

These terms embrace three important legal precedents established by Bland.

The first precedent is that nutrition and hydration constitute treatment. Our argument was that they constitute rather basic human needs that all of us share. Treatments are aimed at reducing or reversing the effects of an illness. But hydration and nutrition, like air, are simply essential requirements for life. Withdrawing all nutrition and hydration from any human being will result in death. But withdrawing a treatment will only result in the deaths of those who rely on that treatment to stay alive.

The second precedent is that having one’s life actively ended, when one is not actually dying, can be in a person’s best interests. But that is a philosophical position based on a particular world view. We can only make a judgment that death is in a person’s best interests by starting with a set of presuppositions about the nature of life, suffering, morality and death that lead to that conclusion. Our argument was that we have no right to decide what another person’s best interests are. Or alternatively that if we are in any doubt, then the benefit of the doubt should be in the direction of preserving life. Deciding for another person that it is in their best interests to have their life ended is a very dangerous precedent indeed. Especially if that person is unable to express an opinion on the matter.

The third precedent is that providing basic care to a person with PVS would be futile. But nutrition and hydration has a real and measurable effect in that it stops a patient dying from dehydration and/or starvation. So how is it futile? It can only be so if a patient’s continued existence itself is judged to be futile. Our argument was that whilst doctors are justified in deciding whether or not a treatment was futile – in that it had no measurable effect or imposed burdens disproportionate to any benefit – they have no right to make judgments about whether a patient’s life is futile.

The assumptions that nutrition and hydration constitute treatment rater than care, that being starved and dehydrated to death can be in a person’s best interests and that the lives of some people are futile are all false assumptions. They should never have been given legal force. But sadly they have.

The Bland judgment was seriously flawed. Bland and the 43 others who have died after him, including the case this week, should not have died in this way. They should have been given basic care, including nutrition and hydration, until they died naturally.

But if the judge presiding over the case of M, the second woman (with MCS), were to decide on 23 September to ‘pull the plug’ an even greater wrong would be done which would place the lives of many disabled people in danger by the legal precedents it created. What we should be doing instead is trying to overturn the Bland decision and amend the Mental Capacity Act.

Whilst the Mental Capacity Act was being drawn up in 2004-5 the Voluntary Euthanasia Society (renamed ‘Dignity in Dying’ in January 2006) took a huge interest and made a significant contribution to its wording. The concepts of ‘futile life’, ‘best interests’ being served by having one’s life ended and nutrition and hydration constituting treatment were all ideas they supported.

They wanted to pave the way to enable people whose lives were judged to be ‘futile’ to be starved and dehydrated to death. Why?

Well we have to go back a little in history to look at the agenda the international ‘pro-euthanasia movement have been pursuing for decades.

At the Fifth Biennial Conference of the World Federation of Right to Die Societies held in Nice, France on 20-23 September 1984, Helga Kuhse, PhD, lecturer in philosophy at Monash University and Research Fellow at the Centre for Human Bio-Ethics in Melbourne, Australia, made the following statement:

‘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 interests, they will accept the lethal injection.’

There’s that term ‘best interests’ again.

Kuhse is not proposing a policy of coercive ‘voluntary euthanasia’. Her view is that a public policy, which allows the withholding of food and fluids, is a cruel one and not in the patient’s best interest. She believes the public recognition that such a policy grossly disregards the interests of patients must eventually lead to the acceptance of active euthanasia.

You don’t often hear this worded as bluntly these days by advocates of legalising euthanasia. They also deny supporting euthanasia for people who are not mentally competent. But the agenda is still there. Allowing death by dehydration and starvation is a step aimed at softening up the public for the introduction eventually of involuntary euthanasia – in their ‘best interests’.

New ‘withdrawal of treatment’ case poses major threat to disabled people

Radio Four’s File on Four programme earlier this week, ‘A Living Death’, featured four case histories of people with serious brain damage.

They included Ian Wilson, an Aberdeen man in his 50s, who suffered a severe head injury in a road accident 21 years ago and is now the longest surviving patient in the UK with vegetative state. He is looked after at home by his 83 year old mother. A second patient with the same diagnosis had died after a court ruled that food and fluids could be withheld.

People with so-called persistent vegetative state (PVS) may live for ten, twenty or thirty years – in fact the record survival is more than forty.

But since the Tony Bland judgement (picture) in 1992, in which the Law Lords ruled that a young man’s nasogastric feeding tube could be removed with the intention of ending his life, it has been possible in Britain to apply to the courts to withdraw hydration and nutrition from people who are severely brain-damaged but not dying.

But this is possible only for those in PVS. Those with lesser degrees of brain damage cannot have their lives ended in this way.

There are estimated to be between 1,000 and 5,000 patients with PVS in Britain today, but so far only 43 have died after court rulings allowing feeding tubes to be removed.

This radio programme was essentially asking two questions:

1.Should we be doing more to encourage families of those with PVS to go to the courts?

2.Should this form of ending life be extended to include those with minimal awareness states that are less serious than PVS?

Two doctors were interviewed, both professors in neurological rehabilitation, Derick Wade of the Nuffield Institute in Oxford, and Lynne Turner-Stokes of Kings College, London.

Turner-Stokes is the chair of a committee set up by the Royal College of Physicians to make recommendations about life-ending protocols for PVS patients. She pointed out the cost of looking after people so affected – about £100,000 per year – and asked whether this cost was justified given financial pressures on the NHS.

Wade was much more cautious and warned of the incremental extension that would follow any further change in the law.

The current law is soon to be tested by a case brought by the mother of a patient – known as M – who was left in a ‘minimally conscious state’ following an episode of encephalitis in 2003. The case has been reported by the BBC and Daily Mail and is to be heard in July this year.

Vikram Sachdeva, counsel for the mother, argues that M ‘is in a very low level minimally conscious state with no meaningful interaction with the environment.’

However, the application is ‘strongly opposed’ by the Official Solicitor, who represents M's interests.

This is a landmark case which, if successful, will radically redraw the law in this country and place the lives of many more disabled people at risk.

The Bland decision crossed a legal rubicon. Withdrawing nutrition and hydration from non-dying patients with the explicit intention of ending their lives is euthanasia by omission. This case, however, could take us several steps further down the slippery slope.

I will be watching it very closely.