Saturday, August 18, 2018

Legal assisted suicide encourages other suicide.

This letter was published in the Kansas City Star on August 17, 2018

I
Margaret Dore
am an attorney and president of Choice is an Illusion, a 501(c)(3) non-profit. Formed in 2010, Choice is an Illusion fights against assisted suicide and euthanasia throughout the United States and in other countries.

David Grube’s Aug. 5 guest commentary in The Star said Oregon’s suicide rates “overall have gone down ... since its Death with Dignity Act went into effect in 1997.” (23A, “Medical aid in dying different from suicide”) I disagree with this claim.

According to the Centers for Disease Control and Prevention’s “Vital Signs” website, Oregon’s suicide rate went up 28.2 percent from 1999 to 2016.

Legal assisted suicide encourages other suicide. Don’t be fooled.

Margaret Dore
Seattle

Friday, August 17, 2018

'Persistent vegetative state' is not a reason to kill

This article was published by OneNewsNow on August 16, 2018

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

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

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

Alex Schadenberg
Alex Schadenberg, who heads the Euthanasia Prevention Coalition, described this condition in greater detail.
“These are people who have what you call a “locked-in syndrome,” or their injury is to the part of the brain that makes it impossible for them to respond to you, but by testing, we can now prove that, in fact, they're hearing everything you're saying,” Schadenberg explained. “They can tell by their brain waves that these people can respond to you – perhaps not vocally or physically, but they do respond to questions with their brain.”
Too often, physicians and families lose hope, and their family member is dehydrated and starved to death – which Schadenberg says is inhumane.
“You couldn't kill a dog this way,” he insisted. “If you killed a dog this way, you could go to jail, but oh, because that human being has some cognitive disability – or might have had a car accident and isn't responding – therefore, we should kill them by dehydration. To me, that's a horrific concept.” 
Food and hydration is not medical treatment – it is a necessity of life.
Dr. Saunders contends that the PVS diagnosis should be dropped, and argues that doctors should deal with patients’ pain so that they can live.

Thursday, August 16, 2018

Medical Experts Now Agree that Severely Brain-injured Patients are Often Misdiagnosed and May Recover

This article was written by Nancy Valko and published on her blog on August 15, 2018.

Nancy Valko
By Nancy Valko

People with severe brain injuries from accidents, strokes, illness, etc. are often in comas at first. If they don’t die or spontaneously wake up, they can progress to a “persistent vegetative state” (PVS) described as “awake but unaware” and/or a “minimally conscious state” (MCS) described as “definite, but extremely limited, awareness of self or environment, and limited means of communication”. People with both conditions have had court battles over removing their feeding tubes such as the 1988 Nancy Cruzan and the 2001 Robert Wendland “right to die” cases.

Now, an August 9, 2018 Medscape article “New Guideline for Minimally Conscious, Vegetative States Released” reveals that 3 specialty societies including the American Academy of Neurology have just published a new guideline with 15 recommendations for “accurate diagnosis, prognosis and treatment for these conditions”.

The reason for the new guidelines, according to Dr. Joseph Giacino, who was one of the authors of the study, is because:

“Misdiagnosis of DoC (“disorders of consciousness”) is common because underlying impairments can mask awareness — in fact, there is a 40% rate of misdiagnosis, leading to inappropriate care decisions as well as poor health outcomes.” (Emphasis added)
The 223 page new guideline titled “Practice guideline update: Disorders of consciousness” states that:
“Clinicians should refer patients with DoC (disorders of consciousness) who have achieved medical stability to settings staffed by multidisciplinary rehabilitation teams with specialized training to optimize diagnostic evaluation, prognostication, and subsequent management, including effective medical monitoring and rehabilitative care.” 
and 
“When discussing prognosis with caregivers of patients with DoC (disorders of consciousness) during the first 28 days after injury, avoid statements suggesting that these patents “have a universally poor prognosis”. (All emphasis added)
According to Dr. Giacino, “Approximately 20% of individuals who have disturbance in consciousness from trauma regain functional independence between 2 and 5 years post-injury, even though they may not return to work or pretrauma functioning.” (Emphasis added)

The study also cites the drug amantadine and brain imaging showing that the brain can still respond normally to stimulus even though the person seems unaware as potentially helpful.

What about the “right to die” for these people? Ominously, the guideline does mention “1 study found that hospital mortality was 31.7%, with 70.2% of those deaths associated with the withdrawal of life-sustaining therapy”. (Emphasis added)

IS THE “40% MISDIAGNOSIS” RATE REALLY NEWS?

Doctors like Dr. Keith Andrews of the UK and US doctor Mihai Dimancescu published medical journal articles in the 1990s showing that around 40% of patients in a so-called “persistent vegetative state” were misdiagnosed. And in 1987, the Royal Hospital for Neuro-Disability in the UK opened a “vegetative state” unit and later developed the “Sensory Modality Assessment and Rehabilitation Technique (SMART)” as a clinical tool for the assessment and rehabilitation of people with disorders of consciousness following severe brain injury.

Despite this, most media stories about cases like Terri Schiavo’s and “right to die”/assisted suicide groups continued to insist that “PVS” is a hopeless condition for which everyone should sign a “living will” to ensure that food and water is withheld or withdrawn to “allow” death.

This happened despite articles like the New York Times’ 1982 article “Coming Out of Coma”. about the unexpected return of consciousness of Sgt. David Mack over a year after the famous “right to die” neurologist Dr. Ron Cranford predicted ”He will never be aware of his condition nor resume any degree of meaningful voluntary conscious interaction with his family or friends” before. (Emphasis added)

There have also been articles about people like Terry Wallis who in 2003 regained consciousness after 19 years in a “minimally conscious” state. Unfortunately, such cases were often explained away as just “misdiagnosis” or a “miracle”.

MY EXPERIENCE

Just before Drs. Jennet and Plum invented the term “persistent vegetative state” in 1972, I started working with these many comatose patients as a young ICU nurse. Despite the skepticism of my colleagues, I talked to these patients as if they were awake because I believed it was worth doing it for the patient if hearing is truly the last sense to go. Because of this, I unexpectedly saw some amazing recoveries and one patient later told me that he would only respond to me at first and refused to respond to the doctor because he was angry when heard the doctor call him a “vegetable” when the doctor assumed the patient was comatose.

Over the years, I’ve written about several other patients like “Jack”, “Katie” and “Chris”in comas or “persistent vegetative states” who regained full or limited consciousness with verbal and physical stimulation. I also recommend Jane Hoyt’s wonderful pamphlet “A Gentle Approach-Interacting with a Person who is Semi-Conscious or Presumed in Coma” to help families and others stimulate healing of the brain. Personally, I have only seen one person who did not improve from the so-called “vegetative” state during the approximately two years I saw him.

CONCLUSION

It is good news that the American Academy of Neurology and other groups are finally rethinking their approach to people with severe brain injuries, especially the recommendation to start rehabilitation therapies as soon as the person is medically stable and the recommendation for periodic and thorough testing over time.

This is crucial because the often quick prognosis of “hopeless” attached to people with severe brain injuries can-and has-led to early withdrawal of feeding tubes and ventilators as well as DCD (donation after cardiac/circulatory death) for these non-brain dead people.

Dr. Joseph Fins MD and chief of Medical Ethics at Weill Cornell Medical College perhaps says it best when he praises the new guideline as “a real step forward for this population that has historically been marginalized and remains vulnerable” and “suggests that brain states are not static, but dynamic, and that people can improve over time”. (Emphasis added)

Wednesday, August 15, 2018

Australian Senate defeats euthanasia bill.

Alex Schadenberg
Executive Director - Euthanasia Prevention Coalition



Great news. The Australian Senate defeated the assisted suicide bill after some members of the Senate changed their minds and voted against it.

Dana McCauley reported for The Sydney Morning Herald that:

The bill, introduced by Liberal Democratic Party senator David Leyonhjelm, was defeated by 36 to 34 votes after two days of impassioned debate in the Senate 
It was knocked down after Liberal senator Anne Ruston and Nationals senator Steve Martin were persuaded to vote against the bill, after initially leaning in favour of it. 
“I cannot in good conscience offer my support to this bill which will provide the territories the ability to legislate in the area of voluntary euthanasia, certainly without ensuring that appropriate safeguards were in place,” Senator Martin told the Senate on Wednesday.
James Fettes reported for ABC News that Labor MLA Tara Cheyne laid blame for the defeat of the bill on Liberal Senator Ted Seselja. 

The bill proposed to overturn a federal law that prohibited the Territories from legislating on issues, such as euthanasia and assisted suicide, without federal approval.

Australia's Northern Territory legalized euthanasia in 1995, but the law was overturned by Australia's federal parliament in 1997.

Tuesday, August 14, 2018

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

This article was published by Peter Saunders on his blog.

Dr Peter Saunders
By Dr Peter Saunders


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

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

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

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

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

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

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

The guidance says it is based on the current legal position which it defines as follows:
  • Clinically assisted nutrition and hydration (CANH) - essentially food and fluids by a fine tube through the nose or through the skin into the stomach - is a form of medical treatment
  • Treatment should only be provided when it is in a patient’s 'best interests'
  • Decision makers should start from the presumption that it is in a patient’s best interests to receive life-sustaining treatment but that presumption may be overturned in individual cases
  • All decisions should be made in accordance with the Mental Capacity Act 2005 (see also my blog post on the recent Supreme Court judgment)
It focuses on three categories of patients where CANH is the ‘primary life-sustaining treatment being provided’ and who ‘lack the capacity to make the decision for themselves’: those with ‘degenerative conditions’ (eg. Dementia, Parkinson’s etc); those who have suffered a sudden-onset, or rapidly progressing brain injury and have multiple co-morbidities or frailty’ (eg. stroke); previously healthy patients who are in a vegetative state (VS) or minimally conscious state (MCS) following a sudden onset brain injury.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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



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

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

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

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

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

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

Monday, August 13, 2018

Bioethics Professor calls on Australian Senate to reject assisted dying

Alex Schadenberg
Executive Director - Euthanasia Prevention Coalition

The Australian Senate was urged by a professor of Bioethics to reject the legalization of euthanasia.

Margaret Somerville
Reporting for the Sydney Morning Herald Dana McCauley wrote about the testimony by Professor Margaret Somerville, an expert on the Canadian euthanasia law, told the Australian Senate that:

the assurance by early proponents of euthanasia that it would not lead to a "slippery slope" had been proven wrong, with research showing that safeguards were being routinely violated. 
"In one study in Belgium, they surveyed doctors and found that 32 per cent had gone outside of the regulations," she said. 
While originally only available to consenting adults, voluntary assisted dying has in some countries been extended to young children, the mentally ill and even newborn babies. 
In January, a 29-year-old physically healthy Dutch woman with mental illness died after drinking poison supplied by a doctor in a medically assisted death.
The Australian federal Senate is debating a private member’s bill brought by Liberal Democratic Party senator David Leyonhjelm, which would enable the ACT and Northern Territory to make their own laws on voluntary assisted dying.

Sunday, August 12, 2018

Suicide is not distinct from assisted suicide for psychiatric reasons

Alex Schadenberg
Executive Director - Euthanasia Prevention Coalition


Recent research by Dr Scott Kim et al, examines the position of the American Association of Suicidology (AAS) who claim that there is a clear difference between suicide and assisted suicide.

The American Association of Suicidology accepted the false position of long-time assisted suicide activist Margaret Battin who wrote that suicide and assisted suicide are different acts done for different reasons. Battin is known for producing ideological studies that are not factually based. The assisted suicide lobby knows that assisted suicide becomes socially accepted when it is differentiated from suicide.

Dr Kim, a professor of psychiatry at the University of Michigan and a member of the Department of Bioethics at the National Institute of Health, was published in the Journal of the American Medical Association Psychiatry (JAMA Psychiatry) analyzing the AAS position based on cases of euthanasia for psychiatric reasons that are occurring in the Netherlands.

Kim suggests that the American states that have legalized assisted suicide claim to exclude assisted suicide for psychiatric reasons, but Kim says:

"it would have been quite understandable if the AAS had limited its statement to PAD for terminal illness especially since the organization is based in the United States (where Psychiatric PAD is not legal) and dedicated to preventing suicides (which occur mostly among persons with mental illness). Yet the AAS statement's support for PAD explicitly includes PAD of all types including PAD for non-terminally persons with psychiatric disorders."
Kim then challenges the position of the AAS based on their own description of suicide. He writes:
However juxtaposing the AAS statement's descriptions of "suicide in the ordinary, traditional sense" with the existing evidence on psychiatric PAD reveals that the features of persons who die by suicide that are said to distinguish them from persons who seek PAD for terminal illness are, in fact, featured by those who receive psychiatric PAD.
Kim then examines the comments from the AAS based on the reasons people ask for PAD. The research states:
"...research shows that these common features of suicide are not only present in psychiatric PAD but are cited as justifications for PAD.
Kim then concludes his research by stating:
"In the debate about psychiatric PAD important considerations are raised by both sides. One of the most concerning is how the practice of psychiatric PAD will affect the longstanding societal commitment to the prevention of suicide. It should give us pause when a leading suicide prevention organization minimizes this problem while ignoring the evidence that psychiatric PAD is difficult to distinguish from suicide. Regardless of one's position on the policy debate, all sides should at least be committed to a more evidence based dialogue."
More articles on this topic:

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

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

Dr Peter Saunders
By Dr Peter Saunders

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Problems with diagnosis

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

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

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

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

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

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

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

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

Difficulties in predicting outcomes

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

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

What about treatment?

Treatments do exist

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

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

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

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

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

Conclusions

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

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

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

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

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

Saturday, August 11, 2018

Fatal Flaws (euthanasia) film strikes a raw human nerve.

This article was written by Deborah Gyapong and published in the Catholic Register on August 9, 2018.

The Fatal Flaws film and pamphlets can be purchased (Link) and the Fatal Flaws Film can be purchased and downloaded (Link). (Fatal Flaws promo below).


Kevin Dunn first met Aurelia in the Netherlands at a conference on euthanasia for young people.
“I found this young woman who had psychological issues but was able-bodied, talking to me, smiling, laughing,” the filmmaker recalled.
Kevin Dunn with Aurelia.
It was the beginning of a relationship that ended tragically with her death by assisted suicide.

“It was the first person I knew who committed suicide, only somebody helped her do it,” said Dunn. “I saw a culture, a country, I saw people who were egging her on, saying ‘We believe you have that right.’ ”
Aurelia’s story is among many told in Dunn’s new documentary, Fatal Flaws: Legalizing Assisted Death. It was released in May in Ottawa and has been drawing large crowds in locations where it has been screened, most recently, in Hamilton, Ont.

In Guernsey, U.K., Dunn was able to arrange two screenings before the island’s Parliament voted May 18 on a euthanasia bill. An MP who supported euthanasia was present at one screening. After seeing the film, he changed his mind, spoke up in Parliament and the bill was defeated, Dunn said.



Fatal Flaws, co-produced by Dunn Media and the Euthanasia Prevention Coalition, is Dunn’s second film on euthanasia.

He admits the stories uncovered were personally “heartbreaking.” He encountered families dealing with the unwanted euthanasia of beloved family members in Belgium and the Netherlands, where euthanasia has been legal since 2002.

He saw the pressure being applied to Candace Lewis, a young disabled woman in Newfoundland, to opt for assisted suicide instead of pursuing treatment for an illness from which she eventually recovered.

Aurelia’s story was especially sad for Dunn, who remembers well his first meeting with the 29-year-old.

“I didn’t pretend to know what her life was like with her psychological illness,” he said. 
“She was fighting for others for access and for her own, which she could not get from her own GP,” he said.
In the film, Aurelia and Dunn continue to connect, including subsequent conversations via Skype.

Aurelia told him, “I don’t seek to end my life; I seek to end my suffering.”

Dunn told her that if she was encouraged to obtain euthanasia, “we’ve abandoned you as a culture.”

“I spoke to her two weeks before a doctor ended her life,” Dunn said. “I was broken after I found out she had received her request. She had it granted outside of the system through an end-of-life clinic.”
Dunn remembers “there were celebrities coming to visit her in the end, to cheer her on in her decision. How far gone are we as a culture where we’re cheering someone on to their demise?
“Shouldn’t we be doing everything we possibility can with the best psychiatric help, the best pain management, as opposed to saying ‘This is what you want … we support you?’ ” he asked. 
“True compassion says I’m going to walk with you until the end,” he said. “Compassion never abandons people. … When we embrace these laws, we embrace abandonment.”
More than 3,700 people have died via assisted suicide since it became legal in Canada in June 2016.

There are already pressures for the country to adopt advanced directives for those with dementia diagnoses, for consent by “mature minors” and for euthanasia for those with psychiatric illnesses who, like Aurelia, were otherwise able-bodied. “This incremental expansion of the laws is out of control,” Dunn said.

Dunn said his biggest surprise in making the documentary was finding out even the “most staunch advocates in Belgium and the Netherlands are concerned about where these laws are headed.”

In the Netherlands, there is a bill before Parliament that would allow people who are “weary of life” to get access to a doctor’s prescription to end their lives.

Architects of euthanasia laws for those in extreme pain at the very end of life are now fighting against the extension of these laws to able-bodied, healthy people, he said.

Dunn hopes his next film project will be on another subject other than euthanasia, though he will continue to document individual stories as they arise.

“These stories stick with me,” Dunn said. “Talking with these people who have suffered so greatly by these laws or have been tricked by these laws. I carry them with me. 
“I’m hoping to take a bit of a rest from it,” he said.
Dunn says all Canadians have a role to play in preventing euthanasia, even beyond applying pressure on governments for better palliative care.
“We can put down our phones and we can go visit our aged mother, our aged father, someone at a nursing home,” Dunn said. “As simple or altruistic as it sounds, be the reason for somebody’s tomorrow.”
For more information go to: fatalflawsfilm.com

Friday, August 10, 2018

Child euthanasia in the Netherlands and Belgium

By Richard Egan

Euthanasia of children in Belgium


Belgian Protest opposing child euthanasia


On 12 December 2013 the Belgian Senate voted 50-17 in favour of a bill to amend the euthanasia law to allow “emancipated minors” to request euthanasia on the same terms as adults; and to allow “unemancipated minors” with the capacity for discernment to request euthanasia for a hopeless medical situation resulting in death shortly and who have reported a constant and unbearable physical suffering that cannot be appeased and that results from a serious and incurable disease or an accident.[1] For unemancipated minors at least one parent must consent to the act of euthanasia.

The proposed law was transmitted to the Chamber of Representatives on 13 December 2013[2] where it passed by 88 votes to 46 on 13 February 2014[3]. It was signed into law by the King on 3 March 2014 and is now in effect.

Three children have so far been killed under the Belgian law in 2016 and 2017. These were a 17-year-old child who was suffering from muscular dystrophy; a nine year old child, who had a brain tumour, and an 11 year old child, who was suffering from cystic fibrosis.

Luc Proot a member of the Belgium’s Federal Euthanasia Evaluation and Control Commission, commented to Charles Lane of the Washington Post that he “saw mental and physical suffering so overwhelming that I thought we did a good thing”[4] As Lane points out he is referring to the Committee approving the cases after the fact based on reports from the doctors who carried out the killing. It is curious that Proot refers to “mental and physical suffering” when the Belgian law specifically refers only to “unbearable physical suffering” in relation to children in contrast to a reference to “unbearable physical or psychological suffering” for adults. This comment raises a doubt in relation to each of these three cases of child euthanasia as to whether there was “unbearable physical suffering” that could not be alleviated.

Good palliative care can relieve the various forms of physical suffering associated with end-stage brain tumours.[5]

Relevant to these cases is a discrepancy between the French and Dutch language versions of Article 3 Section1 of the Belgian euthanasia law in relation to children. The French language version reads “qui entraîne le décès à brève échéance”[6] which means “which will cause death in the short-term”. The Dutch language version reads “binnen afzienbare termijn het overlijden tot gevolg heft”[7] which means “will result in death in the foreseeable future”.

There is a clear difference between death being caused in the “short-term” or in the “foreseeable future”.

Life expectancy for people with cystic fibrosis is increasing significantly in response to developments in treatment regimes. In the United States the median predicted age of survival for people with CF has now increased to 47 years.[8] It is by no means clear that the 11 year old child euthanased in Belgium in 2016 or 2017 was facing imminent death. He or she may have had years to live. Depression is also a particular issue with CF.[9] The “mental suffering” mentioned by Luc Proot may have been relievable through appropriate treatment.

It is not known which form of muscular dystrophy the 17 year old child had. The most serious and common form is Duchenne muscular dystrophy (DMD). “Until relatively recently, boys with DMD usually did not survive much beyond their teen years. Thanks to advances in cardiac and respiratory care, life expectancy is increasing and many young adults with DMD attend college, have careers, get married and have children. Survival into the early 30s is becoming more common, and there are cases of men living into their 40s and 50s.”[10]

On the available information it is not clear whether in this case the child was both imminently dying and experiencing unbearable physical suffering that could not be alleviated.

Euthanasia of children in the Netherlands


Children as young as 12 years of age may be given euthanasia under the Netherlands euthanasia law.

For 12 to 15 year old children the parents must agree with the child’s request for euthanasia before it can put into effect. For 16 and 17 year olds the parents must be involved but the decision is for the child alone.

A total of fourteen children have been given euthanasia, including one 12 year old child in 2005[11], a 16 year old in 2015[12], five 17 year old children between 2002 and 2015[13] and two children (aged 16-18 years) in 2016[14], three children in 2017[15] (on aged 16-18 years, other two cases no case report), and two children both aged between 16 and 18 years in 2018[16].

All cases with detailed case reports (11 out of 14) involved end stage cancer.
References:
[1] http://www.senate.be/www/?MIval=/index_senate&MENUID=21320&LANG=fr

[2] http://www.lachambre.be/FLWB/pdf/53/3245/53K3245001.pdf

[3] http://www.dekamer.be/doc/PCRI/html/53/ip186x.html

[4] Charles Lane “Children are being euthanised in Belgium”, Washington Post, 6 August 2018, https://www.washingtonpost.com/opinions/children-are-being-euthanized-in-belgium/2018/08/06/9473bac2-9988-11e8-b60b-1c897f17e185_story.html?noredirect=on&utm_term=.388d76a167e4

[5] See for example: M. Cohn et al., Transitions in Care for Patients with Brain Tumors: Palliative and Hospice Care, 2014 https://www.ucsfhealth.org/pdf/transition_of_care_handbook.pdf;
Canadian Virtual hospice, What can be expected as brain cancer progresses?, http://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Support/Support/Asked+and+Answered/What+to+Expect+with+Various+Illnesses/Cancer/What+can+be+expected+as+brain+cancer+progresses_.aspx

[6] http://www.ejustice.just.fgov.be/cgi_loi/change_lg.pl?language=fr&la=F&cn=2002052837&table_name=loi

[7] http://www.ejustice.just.fgov.be/cgi_loi/change_lg.pl?language=nl&la=N&cn=2002052837&table_name=wet

[8] Cystic Fibrosis Foundation, https://www.cff.org/CF-Community-Blog/Posts/2017/Survival-Trending-Upward-but-What-Does-This-Really-Mean/

[9] Cystic Fibrosis Foundation, https://www.cff.org/Life-With-CF/Daily-Life/Emotional-Wellness/Depression-and-CF/

[10] Muscular Dystrophy Association, Duchenne Muscular Dystrophy (DMD), https://www.mda.org/disease/duchenne-muscular-dystrophy

[11] Case 2005-01, https://www.euthanasiecommissie.nl/uitspraken/publicaties/oordelen/minderjarigen/2005/oordeel-2005-01

[12] Case 2015-59, https://www.euthanasiecommissie.nl/binaries/euthanasiecommissie/documenten/publicaties/oordelen/2015/geen-redelijke-andere-oplossing/oordeel-2015-59/oordeel-2015-59.pdf

[13] Regionale Toetsingscommissies Euthanasie, Jaarverslag 2015, p. 14 https://www.nvve.nl/files/8414/6166/0719/RTE_jaarverslag2015DEF.pdf
[14] Regionale Toetsingscommissies Euthanasie, Jaarverslag 2016, p. 14 reports only Case 2016-58 https://www.euthanasiecommissie.nl/binaries/euthanasiecommissie/documenten/jaarverslagen/2016/april/12/jaarverslag-2016/RTEjv2016.pdf ; Case 2016-10, https://www.euthanasiecommissie.nl/binaries/euthanasiecommissie/documenten/publicaties/oordelen/2016/zorgvuldigheidseisen-algemeen/oordeel-2016-10/Oordeel+2016-10.pdf ;
Case 2016-58, https://www.euthanasiecommissie.nl/binaries/euthanasiecommissie/documenten/publicaties/oordelen/2016/vrijwillig-en-weloverwogen/oordeel-2016-58/Oordeel+2016-58.pdf
[15] Regionale Toetsingscommissies Euthanasie, Jaarverslag 2017, p. 16 https://www.euthanasiecommissie.nl/uitspraken/jaarverslagen/2017/mei/17/jaarverslag-2017
Case 2017-13, https://www.euthanasiecommissie.nl/binaries/euthanasiecommissie/documenten/publicaties/oordelen/2017/vrijwillig-en-weloverwogen-verzoek/oordeel-2017-13/Oordeel+2017-13.pdf
[16] Case 2018-48, https://www.euthanasiecommissie.nl/uitspraken/publicaties/oordelen/2018/2018-41-tm-2018-50/oordeel-2018-48 ; and Case 2018-51, https://www.euthanasiecommissie.nl/uitspraken/publicaties/oordelen/2018/2015-51-tm-2018-60/oordeel-2018-51

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