Vegetative patient now able to give ‘thumbs up,’ fueling debate over life support

Rasouli Family

An article concerning the Rasouli case that was written by Lisa Priest and published today in the Globe and Mail under the title: Vegetative Patient now able to give 'thumbs up,' fueling debate over life support. The Rasouli case currently scheduled to be heard by the Supreme Court of Canada in November 2012,

The Rasouli case is based on a dispute between the doctors and the family. The doctors at Sunnybrook hospital claimed that Hassan Rasouli was in a Persistent Vegetative State (PVS) and they state that they have the right to withdraw the ventilator from Mr. Rasouli without consent.

The Rasouli family objected to withdrawing the ventilator based on two grounds:
1. the Rasouli family are Muslim and they have religious objections to withdrawing the ventilator;
2. his wife, a physician, did not agree that her husband was in a PVS state.

The Euthanasia Prevention Coalition (EPC) intervened in the Rasouli case at the Ontario Court of Appeal, because we believe it is not safe to give doctors the unilateral right to withdraw life-sustaining medical treatment. The three judge panel, from the Ontario Court of Appeal, unanimously agreed that doctors were required to obtain consent before withdrawing life-sustaining treatment. The doctors appealed the unanimous decision of the Ontario Court of Appeal to the Supreme Court of Canada. EPC has requested to intervene in the Rasouli case at the Supreme Court of Canada.

The article by Lisa Priest that was published in the Globe and Mail indicates that Hassan Rasouli is now giving 'thumbs up' and responding to people's commands. His doctors have determined that he is not in a PVS state and the family has asked the Supreme Court of Canada to quash the case.

The article says:

A hospital patient deemed vegetative is now able to make a “thumbs up” gesture – a sign to family that he is aware, but not yet strong enough to persuade doctors to drop a recommendation to withdraw life support.

The symbol marks a dramatic turn for Hassan Rasouli, 60, who until recently was in a persistent vegetative state. An affidavit filed with Canada’s top court says he’s now minimally conscious, and doctors’ reports say he can “voluntarily control” certain behaviours – suggesting he may be aware but trapped in a paralyzed body.

This new diagnosis seems certain to inflame an already divisive ethical debate about who decides to withdraw life support. And it raises the discomfiting notion – the stuff of relatives’ nightmares – of a patient being aware but unable to communicate when the machines are turned off.

“He is still there,” Mojgan Rasouli, 29, said of her father who has been at Toronto’s Sunnybrook hospital since October, 2010, after sustaining a brain infection after surgery for a brain tumour. “He can feel us and we can feel him.”

The case before the Supreme Court of Canada was begun by two doctors from Sunnybrook Health Sciences Centre, Brian Cuthbertson and Gordon Rubenfeld, who saw no medical purpose in keeping Mr. Rasouli on life support and proposed shifting him to palliative care.

The affidavit, filed by Dr. Cuthbertson, chief of critical care at Sunnybrook, spawned activity in and out of the courtroom. Gary Hodder, lawyer for the Rasouli family, filed a motion to quash the appeal as moot. A leading neuroscientist, Adrian Owen, travelled to Mr. Rasouli’s bedside at Sunnybrook on Tuesday, to conduct investigations to determine whether he can communicate.

His investigations come on the heels of a study he published in the medical journal The Lancet, revealing that 19 per cent of patients believed to be in an irreversible vegetative state showed signs of full consciousness when tested with an electroencephalography machine.

This is a murky area. Medicine is as much art as science, and sometimes even the most seemingly hopeless of patients experiences a change in condition. Whether Mr. Rasouli can communicate is a crucial question on which the medical case is expected to turn.

If he can, he “may be able to, or even capable of, expressing end-of-life wishes, such as whether to discontinue life support,” said Mark Handelman, an expert in health-care law.

If he cannot, Dr. Cuthbertson and other treating physicians “remain of the view that the standard of care does not require continuation of mechanical ventilation given his condition,” the affidavit says. It says Mr. Rasouli has also been diagnosed with other conditions, including spastic quadriplegia, which are extremely unlikely to improve in the long term.

Mr. Rasouli, a retired engineer, receives round-the-clock care: A mechanical ventilator does his breathing; a tube inserted into his stomach provides nutrition and fluids, while a catheter drains his urine. Medications maintain his blood pressure and he must be turned to prevent bed sores.

Sunnybrook neurologist Richard Swartz initially diagnosed him to be in a persistent vegetative state. But he noted things had “clearly changed” when he assessed Mr. Rasouli in late January, nearly 11 months from his last visit.

The patient was “consistently able to show a ‘thumbs up’ ” to verbal requests, with his wife, Parichehr Salasel, translating to Farsi. “… Importantly, he has consistently shown visual pursuit, one of the earliest signs of MCS [minimally conscious state].”

Lawyer Harry Underwood, who represents critical-care physicians Dr. Cuthbertson and Dr. Rubenfeld, declined comment. Dr. Swartz could not be reached.

Mr. Hodder said the new diagnosis “changes the entire texture of the situation. We’re now talking about someone who has some degree of consciousness.”

Bernard Dickens, professor emeritus of health law and policy at University of Toronto, says if it turns out Mr. Rasouli is aware, his lawyers could argue that disconnecting him from life support would cause him moral anguish and could violate the “do no harm” oath of physicians.

For the Rasouli, family, however, this is important not only personally but for other patients facing the same painful issue.

“This could help other families, future patients,” Ms. Rasouli said. “Maybe some families give up. Everything is possible.”

Link to previous articles about the Rasouli case. Link.

Link to a previous article explaining the Rasouli case. Link.

Study shows some people diagnosed as PVS can communicate

A study published in the New England Journal of Medicine entitled: Willful Modulation of Brain Activity in Disorders of Consciousness showed that 5 people who were diagnosed as persistent vegetative state (PVS) after traumatic brain injury, were capable of communicating while being tested with a MRI brain imaging scanner.

The study used brain scanning called functional MRI on 23 people diagnosed as PVS and 31 people diagnosed as minimally conscious.

The people were asked to imagine two situations. The first was standing on a tennis court, hitting a ball to an instructor with second being walking from room to room in their home. Since the two tasks produced different brain responses, the researchers were able to discover whether the person responded to the question and in one case they were able to communicate with the person by telling the person to image one situation if the answer to a question was yes and imagine the other situation if the answer to the question is no.

In reference to the person that the researchers were able to establish a Yes/No communication with, Dr. Martin Monti, one of the researchers, told the Associated Press:

“We were stunned when this happened. I find it literally amazing. This was a patient who was believed to be vegetative for five years.”

“It just says how much we can learn from looking directly at somebody’s brain.”

Dr. Adrian Owen, a co-author of the report told the Telegraph paper in the UK that the findings have enormous philosophical and ethical implications. He said:

“Not only did these scans tell us that the patient was not in a vegetative state but, more importantly, for the first time in five years it provided the patient with a way of communicating his thoughts to the outside world.”

“We can be pretty confident that he is entirely conscious. He had to understand the instructions, comprehend speech, and then make a decision. Obviously this fits into the issue of when patients to be allowed to die.”

The issue of PVS patients being dehydrated to death became a reality in 1993 when the British Courts approved the withholding of fluids and nutrition from Tony Bland, a man who had suffered a traumatic brain injury. Since that time families and medical teams in the UK have been deciding when it is or is not appropriate to dehydrate a PVS person to death.

Nicolas Schiff, a neurologist from Weill Cornell Medical College in New York, was quoted as saying to Reuters that the findings were a: "game changer" that could "have a profound impact across medicine."

If it can be proven that the person was misdiagnosed as being in PVS then it would be less likely that a decision would be made to allow the person to die by dehydration.

Allan Ropper of Brigham and Women's Hospital in Boston stated to Reuters that:

brain activation was detected in very few patients and only those with a traumatic injury, not in cases where the whole brain had been damaged by oxygen starvation.

In 2005, Terri Schiavo died by dehydration after her husband Michael petitioned the court to withhold all fluids and nutrition from her. She died in 13 days from dehydration in a case that divided many Americans.

Since Terri Schiavo was not otherwise dying, the act of directly and intentionally dehydrating her to death is considered by many, including myself, to be euthanasia by dehydration.

What this study proves is that we need to learn a lot more about people who are diagnosed with PVS. This study should also confirm that it is not our place to judge the quality of life of others, but rather to accept people with all types of disabilities.

Link to the Globe and Mail article:http://www.theglobeandmail.com/life/health/vegetative-brains-show-signs-of-awareness-study/article1455750/

Link to the Telegraph article: http://www.telegraph.co.uk/health/healthnews/7150119/Patients-in-vegetative-state-can-think-and-communicate.html

Link to the article in the National Post:
http://www.nationalpost.com/life/health/story.html?id=2522519

‘Stop dehydration deaths,’ says Terri Schiavo’s brother in response to new brain scan

This is a reprint of a CNS article from yesterday that was about the recent research that proved that some unresponsive people have respond to questions.

The article:

Reacting to news of a breakthrough in brain scanning technology, Terri Schiavo's brother Bobby Schindler is calling for a halt to removing hydration from brain-damaged patients who are thought to be in a persistent vegetative state.

An “unscientific, inaccurate” diagnosis of unresponsive patients is being used as “a criterion to kill,” Schindler charged.

Schindler was responding to news that researchers from the Medical Research Council (MRC) and the University of Liège have used a technique called functional magnetic resonance imaging (fMRI) to map a patient’s brain activity while he was asked to answer ‘yes’ or ‘no’ questions.

One patient, a 29-year-old man who suffered a severe traumatic brain injury in a traffic accident, was able to communicate by willfully changing his brain activity, a press release from the MRC reports. He correctly answered questions such as “Is your father’s name Alexander?”

Dr. Adrian Owen and his team at the MRC Cognition and Brain Sciences Unit in Cambridge, England were the developers of the technique.

“We were astonished when we saw the results of the patient’s scan and that he was able to correctly answer the questions that were asked by simply changing his thoughts,” Dr. Owen commented. “Not only did these scans tell us that the patient was not in a vegetative state but, more importantly, for the first time in five years, it provided the patient with a way of communicating his thoughts to the outside world.”

Dr. Steven Laureys of the University of Liège, a co-author of the study, said the scans were the only viable method for the patient to communicate since his accident.

“It’s early days, but in the future we hope to develop this technique to allow some patients to express their feelings and thoughts, control their environment and increase their quality of life.”

The three-year study conducted fMRI scans on 23 patients diagnosed as being in a vegetative state. The technology detected signs of awareness in four of the cases, 17 percent of the participants.

The fMRI technique can decipher the brain’s answers to questions in healthy participants with 100 percent accuracy but has previously not been used for a patient who cannot move or speak.

Dr. Martin Monti, another MRC co-author of the study, said the advance could help with clinical questions and would allow patients to say if they are feeling any pain.

The new study is published in the New England Journal of Medicine.

Dr. Allan Ropper, a neurologist at Brigham and Women's Hospital in Boston, wrote an editorial accompanying the study. According to HealthDay News, he said that people are going to have to “grapple” with the meaning of brain scans that show consciousness or residual consciousness.

“It has to do with what you think life is and what is a meaningful life. Those are social, cultural and theological questions,” he said.

He also cautioned against giving false hope to families, noting the small percentage of the responsive patients. All the study’s patients had suffered traumatic brain injuries, not damage from oxygen deprivation.

Speaking of the 29-year-old patient, Monti said “it is still the case that we managed to give him, to a little extent, a voice. In a sense there was a very positive outcome. We managed to interact. This is an extremely exciting thing."

CNA sought comment on the issue from Bobby Schindler of the Terri Schiavo Foundation.

His sister Terri, who was severely brain damaged from oxygen deprivation, was at the center of a 2005 legal dispute in Florida. She was denied nutrition and hydration by court order in a case between her blood relatives and her husband.

Schindler said the study backs other findings about the “unscientific, inaccurate” diagnosis of a persistent vegetative state (PVS) and shows how it is “often” wrong when diagnosing people with severe injuries.

“As in the case of my sister, they’re using this diagnosis as a criterion to kill.”

Schindler said his family had asked a judge for similar testing for Terri but it was denied.

If the technique was easy to conduct and available, he said, it would have given a better understanding of her condition. “Why not ask, especially when it is going to end someone’s life?”

Asked whether the case offers insight into how unresponsive patients should be treated, he replied:

“Nobody should have to earn the right to hydration. We should do everything we can to care for these people, regardless of how responsive or unresponsive they are.”

Schindler lamented that people are being “indoctrinated” to see killing as “an act of compassion.”

“We are morally obligated to care for these people,” Schindler told CNA.

“They should stop any further dehydration deaths, because we’re learning how inaccurate the PVS diagnosis is.”

Discussing the other patients who could not communicate, he said families of unresponsive patients should continue to treat them with “love and compassion.”

But the patient’s condition should never justify removing food, hydration or “basic care,” he stressed.

Schindler also noted that improvements on science are possible and could improve unresponsive patients’ functioning.

“We should never come to the conclusion that someone is better off starving to death,” he told CNA.

He was critical of news reports that claimed the new technology would not have helped Terri Schiavo, saying some stories were written “as if these doctors want to go out of their way to justify Terri’s death.”

“If you read these articles, it seems they always have this caveat: ‘let’s not jump to conclusions with Terri Schiavo and say these tests would have proven she wasn’t in the conditions the doctors said she was in.’”

Schindler told CNA that more doctors were on record saying that Terri could have been helped with some of the technology available. They believed that she wasn’t in a vegetative state.

He also advocated the elimination of the term “vegetative state” from common use, saying it is “dehumanizing” and devalues the person and his or her “inherent moral worth.” In his view, PVS diagnosis should also not be used as a criterion for ending someone’s life because of how often it is wrong.

Schindler said he describes unresponsive patients as “persons with brain injuries.”

“I don’t know why I have to label them as being a vegetable. I think it leads to an existing prejudice against these types of people,” he told CNA.

Link to the article: http://www.catholicnewsagency.com/news/stop_dehydration_deaths_says_terri_schiavos_brother_in_response_to_new_brain_scan/

How the media frenzy around a Belgian man misdiagnosed as being in a vegetative state came to haunt the doctor who treated him.

By Alex Schadenberg
Executive Director - Euthanasia Prevention Coalition

An article in Newsweek by writer Ford Vox is about the experience by Dr. Stephen Laurey's, the prominent neurologist from Belgium, who diagnosed Rom Houben as being in Locked-in-Syndrome after being diagnosed as PVS for 23 years.

Link to my previous blog comment on this story: http://alexschadenberg.blogspot.com/2009/11/siginificance-of-case-of-man-who-for-23.html

The Newsweek story reports:

It was a fantastic story that ruled the headlines for a few days, but unfortunately, it was only partly true, and the resulting media circus distorted the work of Houben's doctor, Steven Laureys. In reality, Laureys didn't need advanced technology to diagnose Houben, who doesn't meet the definition of a locked-in patient. Laureys actually can't verify that the patient was fully conscious for all those 23 years. Nor did Laureys acquaint Houben with "facilitated communication," a controversial aided-speech method that has Houben reliant on the hand of a therapist to peck out letters on a keyboard. (This method has been debunked time and again, including in a famous series of child-abuse trials involving severely autistic children.) But as the story gained more and more media attention, the narrative changed, and Laureys's work was increasingly misinterpreted. The doctor now sees his name linked to facilitated communication and seems driven to defend the method, even though the case is more accurately seen as a vindication for a simple but elegant observational test that can be used to determine a patient's level of consciousness.

In other words, Laurey's research was falsely attacked as being connected to a questionable communications technique rather than examining his research for what it actually means. The article went on to state:

Laureys, who directs the Coma Science Group at the University of Liege, Belgium, is well regarded for his research on consciousness in brain-injury patients, especially for devising new ways to distinguish patients in a vegetative state from a minimally conscious one (the latter sees waxing and waning of awareness). It's an important distinction: minimally conscious patients have a better chance of recovery than vegetative ones. Laureys's research may give doctors better tools to diagnose these patients. His work using fMRIs and digitally processed EEGs to determine brain activity is world-reknown. This summer, his team published work illustrating how a paper-and-pencil observational test, the Coma Recovery Scale (CRS), first developed by neuropsychologist Joseph Giacino in 1991, is far superior to a subjective analysis—in other words, the collective opinion of entire teams of physicians and therapists, many of whom still misdiagnosed patients after weeks of treatment.

According to Laureys's research, the CRS, a standardized exam where responses to sensory stimuli are repeatedly tabulated, provides a more detailed picture than a routine bedside neurological examination, which might only involve a few minutes of reflex testing of unresponsive patients. It allows doctors to pick up on a variety of low-level patient behaviors that might not otherwise be noticed. In the published study, his team used the CRS to find that 18 of 44 of "vegetative" patients had been misdiagnosed.

The article then explains how the story of Rom Houben actually came to be:

After the study was published, Laureys got a call from Manfred Dworschak, a reporter interested in profiling the doctor and his work. He asked Laureys to help provide a human dimension for the article—a misdiagnosed patient who was willing to go public. Laureys recommended Rom Houben, a car-accident victim whose mother had pressed him for a consultation in 2006, convinced that her son had been misdiagnosed for two decades. Though Houben had not been one of the patients evaluated in the study, the technique was the same: Laureys used the CRS to determine that Houben was, in fact, conscious. Laureys thought Houben would also make a good source in part because he appeared to be able to describe the horror of his misdiagnosis, thanks to the facilitated-communication therapist hired by his family soon after Laureys's initial evaluation.

The article then explains how the Associated Press created a confusion surrounding the story. The article continues:

The German magazine Der Spiegel published the piece about Houben and Laureys online on Nov. 23, which Laureys hoped would call attention to the effectiveness of the underused CRS. (The English translation appeared online two days later.) But when U.S. outlets reported on Houben, key facts were bungled. For instance, The Associated Press mistakenly claimed that Laureys taught Houben how to communicate and later noted that Laureys used sophisticated brain-activity scans to diagnose Houben (he hadn't—though experimental scans were later made, the CRS was all it took for an accurate diagnosis). None of its coverage mentioned the Coma Recovery Scale. Even worse, the presence of the much-debated facilitated-communication technique took the story in a different direction.

Then bioethicist Art Caplan joined the game. His intention was to debunk Laureys criticism of misdiagnosis by attacking the communications method. The article states:

Art Caplan, a University of Pennsylvania bioethicist, knows stories like these can make families afraid to withdraw care and donate organs even when doctors reliably predict a poor outcome for a patient. The moment he saw tape of Houben's aide moving his fingers across a computer keyboard, he sensed trouble, Caplan says. "That's Ouija board stuff," he told the AP. There was a brief moment when the story first broke stateside during which CRS was discussed—Joe Giacino, the American neuropsychologist who developed the test, appeared on Campbell Brown's show on CNN and explained the benefits of the scale, which many centers still don't use. But only 48 hours later, Giacino was back on CNN arguing that the questions about facilitated communication that had become the media's focus were legitimate.

The article concludes by assuring us that in spite of the false furor, Laureys will be back with further research.

Unfortunately, the furor over this odd "therapy" has further confused what the public understands about coma recovery. In fact, facilitated communication is so rare that it's a nonissue for most brain-injury patients. Neither Laureys nor Giacino has ever seen another brain-injured patient use it. Nonetheless, Laureys is planning a thorough investigation and asks the public and the scientific community "to be patient" until he can get "facilitated communication through [a] peer-reviewed journal."

As Laureys heads back into his lab, leaving behind a mess he wants to clear up one day with published science, he admits to some naiveté and says he feels a little "paranoid." "Don't I regret, or should I have foreseen, that this would have happened? Well, I didn't," Laureys says with a sigh. "In retrospect, of course, it's always easy."

Link to the original article: http://www.newsweek.com/id/229784

The siginificance of the case of the man who for 23 years was diagnosed as PVS - but was not

Many people will have read the story of Rom Houben, the Belgium man who was diagnosed as being in a vegestative state (PVS) for 23 years but who in fact had a condition known as Locked-in Syndrome. A person in locked-in syndrome is fully aware of all of their surroundings and they hear and remember the conversations that take place around them, but due to their cognitive disability they are unable to respond.

The case of Rom Houben is significant knowing that many bioethicists are attempting redefine the status of people in PVS as being similar to "brain death", meaning that it is being argued that these people have lost self-awareness and therefore should be treated as non-persons or dead people. Non-persons do not have the right to live and in fact many bio-ethicists suggest that these people should be treated as organ donors.

Dr. Steven Laureys, the prominent neurologist from Belgium diagnosed Houben as being in a locked-in syndrome rather than PVS based on a brain scan that indicated that Houben's brain was functioning at near to normal response.

Dr. Laureys, has released a new study concerning PVS stating: 'Anyone who bears the stamp of "unconscious" just one time hardly ever gets rid of it again.' He also stated that: there may be many similar cases of false comas around the world.' and 'patients classed in a vegetative state are often misdiagnosed.'

The concern about misdiagnosing PVS is not new. Professor Keith Andrews in the UK stated several years ago in his study that 43% of people diagnosed as PVS are misdiagnosed. This is a significant concern in the UK ever since the 1993 court decision that determined that Tony Bland could be dehydrated to death, even though he was not otherwise dying. Since that decision, many people in the UK, who were not otherwise dying, have died by dehydation because it had been determined that they were in PVS.

For instance, Terri Schiavo was dehydrated to death in 2005 based on her diagnosis of PVS and the insistence by her husband that she did not want to live in this manner.

In March 2004, I had the opportunity to be at a presentation in Rome by Dr. Laureys concerning people in a vegetative state. At that presentation Dr. Laureys showed us brain scans of people in PVS and compared them to people who were healthy. By analysing the brain scans he was able to show us the injured parts of the brain of the PVS patients. He then compared the brain scans of people in PVS to healthy people who were sleeping. There were incredible similarities between the scans of the healthy people who were sleeping to the people who were PVS. He concluded that other than the identifiable injured areas of the brain, that medical experts know less about PVS than they would like to admit.

At the same Congress I heard a presentation by an Italien physician who operated an "Awakening Centre". Awakening centres are places that focus on recovery for people who are in a coma state. This physician explained how the use of stimulation techniques have resulted in incredible successes at regaining consciousness for their patients. At a similar Congress in Rome in 2007 I listened to a Polish physician explain about his incredible success at awakening his patients who are in a coma state. How many awakening centres exist in the world? How many in North America?

As executive director of the Euthanasia Prevention Coalition I have received many phone calls from friends or family members of people who are in coma. My experience is that medical professionals are too quick to give-up on the person in coma or cognitively disabled. Family members are often pressured into withdrawing medical treatment or pressured into removing food and fluids from the person in coma, even before they were given a reasonable opportunity for recovery.

Medical professionals need to be far more careful before diagnosing a patient as PVS. If society rejects hypocratic medicine and accepts euthanasia, the time would come where people in PVS would be treated as non-persons, euthanized out of a concept of false compassion or used as an organ donor based on utilitarian ethics. Since approximately 40% of PVS cases are misdiagnosed, and since the PVS diagnosis is often treated like a death sentence, therefore society needs to reject the current paradigm by once again treating people in coma states as human beings deserving of care.

We must reject the dehumanizing of the PVS patient and develop new techniques to offer them new opportunities for recovery.