Vincent Lambert: Death by discrimination

This article was published by Toujours Vivant - Not Dead Yet on July 16, 2019.

Taylor Hyatt

By Taylor Hyatt - Policy Analyst & Outreach Coordinator, Toujours Vivant-Not Dead Yet

Vincent Lambert died recently.

For the past few weeks, all eyes have been on the French courts as they determined his fate. Mr. Lambert was severely injured in a car accident in 2008. Various news reports described him as “quadriplegic” with a brain injury, in a “vegetative state,” in a minimally conscious state, or used multiple terms to describe his condition. The phrase used most consistently throughout the media coverage, “right to die,” does not capture what the case was really about: disability rights.

Vincent Lambert

After the accident, Mr. Lambert used a feeding tube, but could still breathe without assistance. He could not speak, nor did he appear to respond to questions or commands. He had cycles of sleeping and waking, where he opened his eyes, moved his limbs and sometimes smiled or cried. In 2011 he was evaluated by the Coma Science Group at the Liège University Hospital in Belgium, which determined that he was in a “minimally conscious, plus” state and recommended that attempts be made to find a way to communicate with him. He subsequently received physiotherapy for one year, and 87 sessions with a speech/language therapist, which were deemed “unsuccessful.” Evaluations done in 2014 and 2018 by a team of doctors affiliated with the hospital in Rehms where Mr. Lambert was treated described his condition as “vegetative,” a view that was still contested at the time of his death.

Mr. Lambert had no directive in place expressing what he wished to happen if he ever became incapacitated. A bitter family feud arose as a result. Mr. Lambert’s wife Rachel, and six of his eight siblings, maintained that he would not want to live with a severe cognitive disability. The two remaining siblings joined their Catholic parents, Pierre and Viviane Lambert, in fighting to continue the tube feeding. Since 2013, Mr. Lambert’s parents have appealed to various authorities on multiple occasions using different legal arguments, including the European Court of Human Rights (under Article 2 of its convention, the Right to Life) and the United Nations Committee on the Rights of Persons with Disabilities. Article 25 of the Convention on the Rights of Persons with Disabilities calls on states to “prevent discriminatory denial of…food and fluids on the basis of disability.”

The Court of Cassation – the highest applicable appeals court in France – finally ordered that his feeding tube be removed on July 2 of this year. Anyone familiar with Terri Schiavo’s story will see multiple parallels between the two cases, and the questions raised therein.

The campaign to withdraw food and fluids was prompted by Mr. Lambert’s supposed “resistance” to care he was receiving. As Kevin Yuill pointed out, this points to an inconsistency in the position of those advocating the withdrawal of food and fluids; was Mr. Lambert capable of having and expressing an opinion about his care through his behaviour, and therefore possessing the right to refuse care? Or was he in a vegetative state, in which case his movements should be interpreted as reflexive and meaningless?

Another crucial issue raised by the Lambert case is the idea that disabled people must meet a certain threshold of functioning, or potential for improvement, in order to justify their existence and to receive the necessities of life (food and fluids). The view that death is preferable to severe disability led to a modification of France’s Public Health Code in February of 2016 to allow for the passive euthanasia of people like Mr. Lambert who were receiving “artificial life support” (tube feeding). The law allows treatments that are “unnecessary” or “disproportionate” to be stopped; in Mr. Lambert’s case food and fluids were deemed to be “unnecessary” and “disproportionate” because he was unlikely to achieve a certain level of functioning.

As well, the record is unclear as to what kind of ongoing rehabilitative care Mr. Lambert received, aside from the physiotherapy and speech/language sessions recommended by the Coma Science group three years after his injury. The team who evaluated Mr. Lambert in 2014 and 2018 noted that his condition had deteriorated; can that be linked to the kind of care he was (or was not) receiving?

Finally, the question of whether a feeding tube constitutes “artificial” life support was not sufficiently addressed. Not Dead Yet raised this question in the California Supreme Court in the Wendland case in 2000; if a person receives nutrition through a tube taken by mouth, that is not medical treatment; why should that same tube be considered “medical treatment” because it goes into the person’s stomach?

If nothing else, courts should have given more weight to the fact that death is permanent. Mr. Lambert’s life changed drastically after the accident. Requiring the support of family and professionals does not make a person’s life “pointless” or “a waste of resources.” When Mr. Lambert’s wife no longer wished to care for him, calling for his death was not a humane response – especially when his parents were willing to take over. We only get one chance at life.

Another disabled person starved and dehydrated to death while the world watched. I take some solace in the fact that he was sedated when his feeding tube came out, though this does not make his fate right or less unnerving. May Vincent Lambert rest in peace.

• We mourn the death of Vincent Lambert while thankful that an agreement will protect the life of Hannah Cement.

Ontario man in "vegetative state" woke up.

Alex Schadenberg

Alex Schadenberg
Executive Director - Euthanasia Prevention Coalition

People who are diagnosed as being in a “vegetative state” (PVS) are often warehoused in institutions. After a period of time a decision is often made to withdraw all treatment including the withdrawal of fluids and food to dehydrate the person to death.

A few years ago I attended a European conference where presentations were made by physicians who operate medical treatment facilities to awaken patients through stimulation, known as awakening centers. The treatment stimulates the body to activate the brain and help it to heal.

The story of Juan Torres, from Oakville Ontario, is significant. Torres awakened from a PVS state and improved beyond expectations. 

Juan Torres with his parents.

An article by Kate Lunau published by MacLean's Magazine (December 31, 2015) tells the story:

“I don’t really know what happened,” Juan Torres, a 21-year-old from the Toronto suburb of Oakville, tells Maclean’s. “But, one day, I just woke up.” 

That Torres is speaking at all is astounding. Early one morning in July 2013, Torres, then 19, was discovered by his mother, face-down and unconscious on his bedroom floor, after choking on vomit in the night. He was left profoundly brain-damaged, and his doctors diagnosed him as vegetative: unable to speak, to eat, to deliberately control his movements, to follow basic commands. Vegetative patients retain their reflexes, and might grind their teeth or grimace; their eyes rove about the room but won’t fix on anything. They don’t demonstrate a glimmer of consciousness and can live that way for years, spending their days in hospitals, long-term-care facilities, or at home, unless families decide to end life support. The doctors who treated Torres didn’t think he’d be any different; they expected his status to be permanent, his mother says.

But Torres life changed:

Today—contrary to expectations—Torres is back home with his family. He gets around in a wheelchair; supported by his parents, he can take halting steps forward. In September, he started the general arts and science program at Oakville’s Sheridan College.

If all this wasn’t unexpected enough, there’s something else about Juan Torres that has left neuroscientists stunned. Not only did he recover, but he claims to remember what happened while he was clinically vegetative—and he has memories to prove it. In those hazy months before anyone knew he was aware, Torres says he remembers a doctor telling him to squeeze his hand, even though he couldn’t. He remembers being asked to “follow a tennis ball” with his eyes. Scientists have tested his memories, asking Torres to identify a set of faces and objects he encountered while technically “vegetative.” And he was able to do it. “I felt sad, because I couldn’t communicate with my family,” Torres says. He felt scared and “emasculated” at his inability to respond to the doctor’s cues and commands. For Torres, it was a nightmare. “I felt trapped in my own body,” he says. “I couldn’t talk. I couldn’t react.” It was like being half-asleep and frozen, he says, unable to respond.

Adrian Owen (center)

Adrian Owen, who researches communicating with people diagnosed as PVS considers Torres case as “mind-blowing”

“His case is mind-blowing,” says Adrian Owen, a British neuroscientist at Western University who has been investigating one of the most mysterious, least understood phenomena: human consciousness. It’s often said that the brain is the most complex structure in the known universe. Torres’s case shows us how much we’ve yet to understand: the fact that he was creating memories suggests he wasn’t unconscious at all, despite his doctors’ best diagnosis. “It tells us there really was a person there,” Owen says, “and that person was experiencing the world.”

Vegetative patients have not been a high priority for researchers, some of whom doubtless see them as a “lost cause.” It’s hard even to say how many people live this way, or to compare their outcomes. The vegetative state can arise from all sorts of mishaps that lead to brain injury, from a car accident or stroke, to drowning, choking, a sports or military accident. There doesn’t seem to be much consensus on their treatment, either. ...

Owen believes that Torres case is unique, but the question is, how many people are misdiagnosed?

All neuroscientists, including Owen, agree that many—probably most—of the patients diagnosed as “vegetative” truly are so, with no hope of recovery. Certainly, the vast majority will never recover like Torres: there’s no doubt that this young man is an extraordinary case. “I’ve seen hundreds of patients over almost 20 years and he is completely unique,” Owen says. But the issue is, are we misdiagnosing a subset of patients as “vegetative,” and leaving these people to languish? It’s a chilling suggestion.

Torres tells Lunau: “Don’t count me out of the fight just because I’m in bed.” Lunau explains what happened to Torres:

Torres came home around midnight, chatted with his dad and ate some salad—his father didn’t notice anything unusual in his behaviour—before going to bed. Early the next morning, Perez awoke to strange noises coming from his room. At first she thought it was the dogs. She discovered her son lying on the floor in a puddle, in respiratory arrest. How long he’d gone without oxygen is impossible to say. She performed CPR, and her daughter, Laura, called 911. “At the hospital, they said, ‘Hold his hand, because he’s leaving us,’ ” Perez recalls. Her voice falters as she’s overcome by the memory. “They said he was going to die that day.”

The period that followed was devastating, a blur. Both Perez and her husband, Jorge Javier Torres, took several months off work, staying by their son’s hospital bed day and night. ...As the shock wore off, Perez and her husband started researching how to help Torres. “You cannot leave a boy that young,” Perez says. “Not alive, not dead; just lying there. Wouldn’t you try anything?”

They discovered hyperbaric oxygen therapy, in which patients breathe pure oxygen inside a pressurized chamber. HBOT, as it’s informally called, is offered at hospitals and clinics across Canada; it’s approved to treat a range of conditions, such as decompression sickness, air or gas embolism, and carbon monoxide poisoning, but not brain injury. ...

Juan Torres’s parents had no idea whether it would benefit him, but they were desperate to try anything. So they signed him out of the hospital in Oakville on a series of day passes—itself a tricky endeavour, given all the equipment supporting him, including a feeding tube, IV and catheter—and took him by special medical transport to regular HBOT sessions at a private clinic in nearby Mississauga, Ont. ...

Hyperbaric oxygen was just part of their regimen. Torres’s parents assembled a collection of items they’d use to stimulate him daily: flashcards with “colours, words, pictures of the dogs, pictures of family members,” Perez says. She’d rub sandpaper and feathers along his toes. She’d bring in coffee beans to waft under his nose. “I remember that,” Torres says, as his mother tells the story, “the smells, like lemon, mint and hot sauce.” (They used Tabasco.) Once in a while, family members were sure they saw him respond. “The doctors would say, ‘Yes, but it’s just a reflex,’ ” Perez recalls. “It was difficult to keep hope, because there were so many days when you don’t see any signs.”

About a month into their new reality, Juan Torres’s parents took him to a little garden outside the hospital to get some fresh air. He was in a portable hospital bed, unable to sit up. “We put him in the nice sun, and started to massage him,” Perez says. “I was talking about how white he was getting.” His fair complexion has always been a running joke with his family members, who call him Snow White. “We are all kind of tan, and he’s the only one with white skin,” Perez says. Torres was “unconscious,” she continues, but he started laughing along at the joke.

They immediately reported this to doctors, who, once again, deemed it a reflex. “I couldn’t believe it. We were talking, it wasn’t random,” says Perez. Even so, vegetative patients do show automatic responses that can confuse and alarm loved ones. It’s not unusual for family members to interpret these as signs of consciousness, when it could just be wishful thinking. “I started to wonder if I was seeing something that wasn’t there,” Perez says.

Researchers, working with Adrian Owen's became involved with Torres.

In late August, Laura Gonzalez-Lara, research coordinator with Adrian Owen’s lab at Western, travelled to Oakville to examine Juan Torres. She’d heard about the young man from a hospital worker involved in his treatment. “He came out completely vegetative,” she says. “There were no signs of awareness, beyond some reflexive behaviour. It was actually pretty low,” she adds, “even for our vegetative-state patients.” A month later, he was brought to London, Ont., for further assessment, including with a functional magnetic resonance imaging (fMRI) machine, which measures and maps brain activity. Although the fMRI tests were inconclusive (Torres moved too much in the scanner), “we assessed him [behaviourally] several times that week,” says Damian Cruse, a former research scientist in Owen’s lab who is now a lecturer in psychology at the University of Birmingham. “Every time, he fulfilled the criteria for vegetative state.”

The family didn't give up.

Not long after, on Thanksgiving, Torres’s family brought him home for a day visit, his first since leaving in an ambulance three months before. As his parents carefully wheeled him into the backyard, the family dogs, Yogi and Cindy, came bounding out to greet him. His father, somehow intuiting on behalf of his son, grabbed a dog whistle and stuck it between Torres’s lips. And Torres did what no one had thought possible: He started to blow.

Not long after, the team at Western phoned Perez. “As we were explaining the results,” Gonzalez-Lara says, telling Perez that tests indicated her son was clinically vegetative, “she told us, well, he just started talking.” Soon after Thanksgiving, Torres had begun mouthing words, then whispering. He gradually regained his voice. That November, he was discharged from hospital and sent to a rehabilitation centre.

Torres went back to London Ontario where they began to test his memory of being PVS.

In May 2014, six months after Torres started speaking, Owen and his team brought him back to the lab. “There was a fair amount of disbelief,” says Cruse. “Everyone agreed it would be a good idea to test his memory, but is he really going to remember the faces of people he met six months ago?”

They showed Torres photos of people he’d met on his initial visit, when he was still clinically vegetative, mixed in with photos of others who looked similar, but whom he’d never encountered. They did the same with objects, including two hand mirrors, one framed in red, the other in white. Torres correctly identified all five faces, and three of the four objects. (Findings will be published in a future scientific paper.) Seeing a photo of Laura Gonzalez-Lara, the research coordinator whom he’d met while vegetative, he said: “That’s Laura.” About another person, he said, “I recognize her nose.” And in still another example, he described the voice of a person he’d met as “deep and monotonous,” a description so bang-on, it made the others laugh.

Recovery among vegetative patients is so rare, But Owen's research does conclude that some people who are diagnosed as “vegetative” are not. The article states:

The more patients he scans, the more he discovers about the wide variety who are labelled “vegetative”—and the possibility that some aren’t vegetative at all. Shortly after being recruited to Western in 2010 (Owen holds the Canada Excellence Research Chair in cognitive neuroscience and imaging), he met Scott Routley, who had been in a car accident 12 years before that left him in a vegetative state. In a brain scanner, Routley could answer “yes” and “no” by activating parts of his brain on command. Owen asked whether he was in pain, and Routley answered no, a first for any vegetative patient.

Juan Torres is another first. Whenever Owen discusses his work, he hears the same question. “Someone will put up his hand and say, ‘Do you have a patient who recovered and can tell you [what it was like]?’ ” Owen’s team has determined that one in five patients who appears to be vegetative retains some level of consciousness, which can’t be detected through standard clinical assessments. The number could go up, he argues, as detection methods improve—but even with a growing body of research, it remains controversial to claim consciousness among these patients. Some worry it could give families false hope, or cause feelings of guilt among those who do decide it’s best to end life support.

The article suggests that Torres's recovery is impossible to explain, except for the fact that the body stimulation that is done at awakening centers in Europe have a fairly successful recovery rate. I am not a scientist or a doctor, but it appears clear that the stimulation that the family did was likely what led to Torres's recovery. The article states:

Juan Torres’s recovery is impossible to explain, although his youth and physical strength must have helped. Medical reports on Torres’ rehabilitation, which Perez provided to Maclean’s, suggest that healthy parts of his brain may have been recruited to work on behalf of areas that were permanently damaged. Owen admits this is possible, but “his recovery was fairly swift for that to have been the case,” he says. “There’s not any clear neuroscientific explanation I can give.”

Torres says he feels pride at his recovery. “I learned a lot, actually,” he says. “I used to get mad. Now I’m more patient.” But a sense of loss hangs over him. A focused and determined young man—his recovery is no less a testament to his own resolve, and his family’s—his frustration can at times be palpable. His life has swerved down a path he never could have predicted. But he’s back in school. He’s playing sports, including wheelchair rugby. (He enjoys “the competition,” he smirks. “The violence.”) Torres spends spare hours making electronic music on a laptop at home. He dreams of becoming a platinum-selling record producer.

Every day, even now, Perez tells her son how grateful she is. The fact that Juan Torres was building memories as he lay in bed, by all accounts unconscious, is still a cause for marvel. “In a way, he was there,” Perez says, “even though he wasn’t. It’s like dying and coming back again.”

In 2004, after attending the European conference I stated that awakening centers need to be established in Canada. For those who are reading this article and have a family member who is PVS, try to stimulate the brain, as the family did for Torres. There is nothing to lose.

'Brain Dead' child in India improves after father requested euthanasia.

Alex Schadenberg
Executive Director - Euthanasia Prevention Coalition

Apoorva Mandhani reported for Livelaw.in, that a "brain dead" boy, whose father asked the court to approve euthanasia for, has been improving. The father was not asking for a lethal injection but rather the withdrawal of basic care.

The article reports that the father asked the Madras High Court for euthanasia for his son. The court, then, ordered the child be examined. The article states:

Hearing the petition, a bench comprising Justice N. Kirubakaran and Justice Abdul Quddhose had appointed a three member search committee to nominate three doctors from various fields to examine the child. 

The medical specialists appointed by the search committee had then opined that the clinical status of the child does not fit into the category of Persistent Vegetative State.

In the meantime, however, the court was approached by the Director of the Anirudha Medical Organisation Private Limited, who sought permission to treat the child through ‘Trigger Point Therapy’. After ten days of this therapy, the court was informed that the child was showing signs of significant improvement.

In response to pictures and video's showing significant improvement, the court stated:

“Today, when the matter is called, Mr.S. Raveekumar, learned counsel for the 5th respondent produced photographs and video clippings of the petitioner’s son showing that the child was able to sit with minimal or no support. Moreover, it is submitted hat child is responding to light and he raises his hand as per the command. If that is so, really, it is a path-breaking achievement in Medicine.” 

“Since Trigger Point Therapy and Musculo-Skeletal Therapy could be taken advantage of and more children, as well as adults diagnosed with different degrees of brain damage, could be treated, appropriate training has to be imparted in the said therapies."

I will not comment on the medical facts of the case, but there are many people who could benefit from therapies that heal the brain. Many patients are considered "as good as dead" or "organ donors" rather than receiving treatment. 

These are people with brain injuries, not breathing corpses.

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

Alex Schadenberg
Executive Director - Euthanasia Prevention Coalition

Niall McGrath with family.

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

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

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

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

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

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

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

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

He also uses an iPad, and attends speech therapy.

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

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

'Persistent vegetative state' is not a reason to kill

This article was published by OneNewsNow on August 16, 2018

Dr Peter Saunders

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

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

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

Alex Schadenberg

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

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

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

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

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

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

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)

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.

‘Medical Conscience’ has become a controversy

This article was published by National Review online on April 2, 2018.

Wesley Smith

By Wesley Smith

Should doctors and nurses be forced to participate in interventions they find morally abhorrent or unwarranted? As one example, should ethical rules require pediatricians to medically inhibit normal puberty as demanded by parents to “treat” their child’s gender dysphoria — even if they are morally opposed to the concept and/or the supposed treatment?

Some say yes. Thus, influential bioethicist Ezekiel Emanuel argues that medical professionals are obligated to accede to the patient’s right to receive legal interventions if they are generally accepted within the medical community — specifically including abortion. Emanuel stated doctors who are morally or religiously opposed, should do the procedure anyway or procure a doctor they know will accede to the patient’s demands. Either that, or get out of medicine.

• Ontario court decision forces doctors to refer patients to death.

Supporters of “medical conscience” argue that forcing doctors to participate in interventions they find morally abhorrent would be involuntary medical servitude. They want to strengthen existing laws that protect doctors, nurses, and pharmacists’ who refuse participation in legal interventions to which they are morally or religiously opposed.

• Wisconsin prescribe or refer: Proponents of assisted suicide show their true nature.

Now, medical conscience looks to become another battlefront in our bitter partisan divide. After the Trump administration announced rules that will place greater emphasis on enforcing federal laws protecting medical conscience, Democratic state attorneys general promised to seek a court order invalidating the new rule. From the New York Law Journal story:

But 19 state attorneys general, led by New York’s Eric Schneiderman, argue that it is the patients who will be discriminated against under the proposed rule. This is particularly true, they argue, in the cases of marginalized patients who already face discrimination in trying to obtain health care, such as lesbian, gay, bisexual and transgender patients and male patients seeking HIV/AIDS preventative medications, according to the comments filed in opposition to the rule. 

“If adopted, the proposed rule … will needlessly and carelessly upset the balance that has long been struck in federal and state law to protect the religious freedom of providers, the business needs of employers, and the health care needs of patients,” they state.

The stakes can only increase as moral controversies in health care intensify in coming years. As just two examples, some bioethicists are lobbying to enact laws that would give dementia patients the right to sign an advance directive requiring nursing homes to starve them to death once they reach a specified level of cognitive decline. There are also increasing calls to do away with the dead-donor rule in transplant medicine so that PVS patients can be organ-harvested while still alive.

If these acts become legal, should doctor and nurses who practice in these fields be forced to participate? If Emanuel’s opinion prevails, the answer could be yes. If medical professionals are protected by medical conscience legal protections, the answer would be no.

Medical conscience is not just important to personally affected professionals. All of us have a stake. Think about the potential talent drain we could face if we force health-care professionals to violate their moral beliefs. Experienced doctors and nurses might well take Emanuel’s advice and get out of medicine — while talented young people who could add so much to the field may avoid entering health-care professions altogether.

Comity is essential to societal cohesion in our moral polyglot age. Medical conscience allows patients to obtain morally contentious procedures, while permitting dissenting medical professionals to stay true to their own moral and religious beliefs. I hope the Democrats’ lawsuits are thrown out of court.

Woman with brain injury communicates with mom after 21 years.

Alex Schadenberg
Executive Director - Euthanasia Prevention Coalition

Joellen Huntley

A good news story was published by the Canadian Press on December 29 about a Nova Scotia woman who communicated with her mother on Christmas day, the first time in 21 years. Her mother called it a "Christmas miracle." According to Keith Doucette:

Louise Misner said her 37-year-old daughter Joellen Huntley used eye-motion cameras and software on an iPad to respond to a comment from Misner about her clothes. 

Huntley has been severely disabled since she was 15, unable to walk or talk and fed through a tube. She has always responded to family members' presence by making sounds, but was unable to communicate any thoughts. 

Huntley was thrown from a car that had swerved to avoid a dog that was running loose along a road in Centreville, N.S., on April 18, 1996. The accident claimed the life of her boyfriend and a young girl who was the sister of the driver.

The article reports that the Christmas miracle happened in this way:

The breakthrough occurred during a Christmas Day visit at the Kings Regional Rehabilitation Centre in Waterville, N.S. 

"I said 'Joellen I like your new Christmas outfit you got on,'" Misner said in a telephone interview on Friday. 

Misner said her daughter then used the technology to find an icon for a short-sleeve shirt.
"And then she said no, and went to a long-sleeve shirt because she was trying to tell me what she had on." 

Misner said her reaction was immediate to what had been a long hoped for personal communication.

The computer equipment was purchased for Joellen with the proceeds from a court settlement. The story states:

Misner said the settlement money helped the family purchase the computer equipment she is now using with the help of a speech pathologist. 

"We had to go through two or three different screens until we found the right one for her and it's called Eyegaze. Her eyes focus on the icons to answer questions." 

Misner said one of Joellen's nurses told them she is "doing really well with it." 

"I knew she just needed time for technology to catch up with her," Misner said.

In the past few years Dr. Adrian Owen, a researcher at the University of Western Ontario, has developed technology to communicate with people who are believed to be in a Persistent Vegetative State. The computer technology used by Joellen is different than the technology used by Dr. Owen but this article shows how technology is opening the window of life for people who were considered by many to be "hopeless."

The "Christmas miracle" teaches us that we should never consider a human being with disabilities as less than an equal person. It also teaches us that every human life has value.

Many people believe that euthanasia should be considered for people in Joellen's condition.

Persistently Unconscious Patient (15 years) Awakened

This article was published on his National Review blog on September 26, 2017

Wesley Smith

By Wesley Smith

Ever since Terri Schiavo, writing about the wrongness of removing feeding tubes from patients diagnosed with persistent unconsciousness (PVS)–we should never call them “vegetables,” a term as denigrating and dehumanizing a racial epithet–is like spitting in the wind. 

But, what the heck. As mentioned above, such patients are often dehydrated to death by having their feeding tubes removed, which takes up to two weeks. 

Never mind that some 40% of such diagnoses are erroneous. Never mind that some of these people may feel the agony of not eating or drinking if so misdiagnosed. Bioethics and law treat artificial nutrition and hydration as a medical treatment, and any medical treatment can be refused or withdrawn. 

But what if scientists found a way to awaken such patients? That may be on the way after an unconscious patients seems to have been roused through nerve stimulation. From the Guardian story: 

A 35-year-old man who had been in a persistent vegetative state (PVS) for 15 years has shown signs of consciousness after receiving a pioneering therapy involving nerve stimulation. 

The treatment challenges a widely-accepted view that there is no prospect of a patient recovering consciousness if they have been in PVS for longer than 12 months. 

Since sustaining severe brain injuries in a car accident, the man had been completely unaware of the world around him. But when fitted with an implant to stimulate the vagus nerve, which travels into the brain stem, the man appeared to flicker back into a state of consciousness. 

He started to track objects with his eyes, began to stay awake while being read a story and his eyes opened wide in surprise when the examiner suddenly moved her face close to the patient’s. He could even respond to some simple requests, such as turning his head when asked – although this took about a minute. 

This should be good news that should cause us to pause in removing feeding tubes from the unconscious as this research proceeds. (Some bioethicists even want such removals to become the standard of care, say after two years.) 

But I can hear the bioethicists now–because I have read their advocacy: It is more urgent to remove the feeding tubes from the minimally conscious because they may be in horror at their impaired condition or otherwise suffering. And, in fact, people with minimal awareness are legally dehydrated in all fifty states. 

Except–a study of patients in a locked-in state–the appearance of complete unconsciousness but actually aware–shows that most are “happy,” and majorities would not want euthanasia. (Scientists can now communicate with such patients.) 

So, as this research proceeds, let’s care for these seriously disabled patients–both apparently unconscious and conscious–as full and equal members of the moral community, and think twice before removing sustaining treatment that can only have one result; a protracted and perhaps, painful death.

Unconscious Patient Heard Push to Stop Care

This article was published on Wesley Smith's blog on October 21, 2014.

By Wesley Smith

Wesley Smith

Sometimes, I think, the medical system is in too big a rush to assume that people with brain damage are out and gone.

This is the fruit of a “quality of life” value system that increasingly infects medicine. Human life matters far less now than the supposed quality of the life expected to be lived.

That’s very dangerous. Here’s an example: An Australian woman had a stroke. She appeared completely unconscious, but was really awake and aware. And she heard the push by her medical team to end life support. From the story:

People in a vegetative state may be aware

By Alex Schadenberg

Executive Director - Euthanasia Prevention Coalition

The UK Independent published an article on a study by scientists at Cambridge University concerning tests on people considered to be in a vegetative state or a minimally conscious state.

The Independent is reporting that:

Severely brain-damaged patients in a persistent vegetative state may be capable of being consciously aware of the outside world, scientists said.

Scientists at Cambridge University have developed a test to determine whether people in a vegetative state can respond to their surroundings. Dr Srivas Chennu reported that:

“Our research could improve clinical assessment and help identify patients who might be covertly aware despite being uncommunicative,”
“... for patients diagnosed as vegetative and minimally conscious and their families, this is far more than just an academic question; it takes on a very real significance,”

The article in the Independent explained the research data:

The researchers analysed the brainwaves of 32 patients using 128 electrical sensors fixed to the scalp to measure electroencephalograph (EEG) activity. 13 members of the group were classed as being in a persistent vegetative state, with the rest being minimally conscious. 

The study, published in the online journal Plos Computational Biology, found that four of the 13 patients with persistent vegetative state had a “robust” network of brain activity that would allow conscious thoughts, which was confirmed when they were asked to imagine playing tennis when their brains were scanned using a magnetic resonance imagining (MRI) machine.

Patients diagnosed as PVS can be dehydrated to death. What if the diagnosis is wrong?

This article was written by Bobby Schindler, the brother of Terri Schiavo. Bobby and his family operate the Terri Schiavo Life and Hope Network. This article was published by LifeNews on April 21, 2014.

Bobby Schindler will be speaking at the First National Symposium on Euthanasia and Assisted Suicide on May 2 -3, 2014 in Minneapolis Minnesota.

The parents of Terri Schiavo.

By Bobby Schindler

I have written time and time again about the dangerous and dehumanizing persistent vegetative state (PVS) diagnosis. Actually, we saw in my family’s battle to save my sister, Terri Schiavo, from death by dehydration, that a tremendous amount of debate raged over whether or not she was in this condition.

In fact, this diagnosis is what allowed the court to order the removal of Terri’s food and water. Yet despite continuing research validating that the PVS diagnosis is growing in its inaccuracy, the medical community uses this diagnosis to end countless lives of our medically vulnerable patients who are allegedly in this condition.

This latest finding is one of a continuous stream of reports that have been issued on the inaccuracy of the PVS diagnosis. From the Report, Brain Scans Show Vegetative Patients May Actually Recover:

The Journal’s report, released on Feb. 3, revealed that some patients who were believed to be in a PVS were actually able to understand and communicate. Through the use of functional magnetic resonance scanning (fMRI), researchers in the United Kingdom estimated that a percentage of those patients suffering from profound brain injuries possessed the capacity to comprehend and communicate in limited ways.

Terri Schiavo

Indeed, every time these studies are published we should move to abolish the PVS diagnosis, in particularly, using it as a reason to kill. Sadly, however, despite these imaging studies and what they reveal about the human brain, the vast majority of the medical community sees nothing improper about using such an unscientific diagnosis for, what usually turns out to be, reasons almost never in the best interest of the patients.

Furthermore, not only can the PVS diagnosis be used as an actual death sentence for a patient, but as a death sentence figuratively speaking, as well. And it seems both are supported under the pretext to save health care costs. You see, the PVS can also be used to cut off funds for a person in need of vital rehabilitation. Because once insurance providers receive the PVS diagnosis in regards to the patient’s condition, no longer are they willing to pay for any rehabilitative services.