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A Life Interrupted: Hassan Rasouli’s journey from an earache to a high-stakes battle over end-of-life decisions

Two years ago, Hassan Rasouli checked into Sunnybrook hospital to have a brain tumour removed, fell into a coma, and provoked a Supreme Court battle over who decides to pull the plug. Then, one day, he awoke

A Life Interrupted

For the past two years, the Rasouli family has visited Hassan daily at the Sunnybrook ICU (Image: Christopher Wahl)

Early in the summer of 2010, Hassan Rasouli, a 59-year-old engineer, had a problem with his right ear. He noticed sounds were coming in muffled and indistinct, as if through a ball of cotton. By August, his hearing loss was getting worse. The ear was slightly numb, too, and at times Rasouli caught himself feeling dizzy. He didn’t think much of it. He had moved from Ishfahan, Iran, to Toronto just four months earlier with his wife, Parichehr Salasel, a family doctor, their 27-year-old daughter, Mojgan, and their 22-year-old son, Mehran. They’d come to Canada with the capacity for risk particular to the new immigrant, the kind that leads someone to abandon a life of familiar comforts for an uncertain world where the possibilities might open up a little wider. They were excited about creating a new life.

With his bulbous nose, expressive eyebrows, thick moustache and bemused half-smile, Hassan Rasouli looks like a rumpled, Persian Groucho Marx. He was the adventurous one in the family, the parent who would drag the kids on road trips across the country every year, barbecuing kebabs at the roadside and camping in the forests of northern Iran. He was the kind of father who, at family parties, would cajole his embarrassed adolescent daughter into accompanying him on the piano while he sang his favourite pop song.

When the Rasoulis qualified for immigration in 2005, Hassan took the family across Canada to find a place to settle down, visiting Montreal, Vancouver and Quebec City before deciding on Toronto, a place where they already had a few friends and relatives and where the work and education opportunities seemed best. They moved into a house near Yonge and Steeles and joined the local mosque. They went on walking tours of Toronto’s parks, exploring their adopted home like tourists. Mojgan signed up at Waterloo to start her second master’s degree, this one in urban planning. Mehran enrolled at the University of Ontario Institute of Technology in Oshawa to study engineering. Salasel was beginning the long process of preparing for Canadian medical exams while Rasouli set up his own engineering consulting company.

At his regular checkup that August, Rasouli told his doctor about the ear problem. He was sent for a CT scan and an MRI, which confirmed Rasouli had a brain tumour. As brain tumours go, it was a good one—it could be removed with a relatively safe, reliable surgery. Rasouli’s doctor recommended Mahmood Fazl, a neurosurgeon at Sunnybrook Health Sciences Centre who happened to have graduated from the same university as Salasel, the best medical school in Iran.

On October 7, the day of the operation, Rasouli was in good spirits. “Don’t worry,” he told Salasel. “I’ll be home in two days.” At noon he said goodbye to Salasel and went into the operating room. Nine hours later, Fazl came down to the waiting room and assured Salasel that the surgery had been a success. They’d managed to remove 99 per cent of the tumour. There had been a small incident when they were intubating Rasouli, Fazl explained, but everything should be fine.

When Salasel visited her husband that evening, however, he was weak and groggy. His breathing was ragged and he had difficulty swallowing. He squeezed Salasel’s hand before shooing her away. That night he went into cardiac arrest. The staff revived him, intubated him and moved him to the critical care unit, where a rotating team of doctors oversaw his care. Over the next few days, Rasouli got worse. He was feeble and agitated. His legs twitched. Salasel remembers one of the doctors trying to reassure her. “She said to me, ‘It’s okay, that’s normal. After brain surgery everyone is like this. Don’t worry, it will get better.’ But it didn’t get better. Every day was worse than the day before.” During a visit on October 15, Rasouli looked weaker than ever. His family gave him a pad of paper. “I am tired,” he scrawled in Persian, the characters falling off the page. They were his last words.

The next day he fell into a coma. He had caught bacterial meningitis after surgery. The bacteria had spread throughout his brain, inflaming his ventricles and setting off a series of strokes. The hospital put Rasouli on a mechanical ventilator. It was an unfortunate situation, the doctors said, but now the family would have to face their new reality: Hassan Rasouli would never regain consciousness.

In the weeks following Rasouli’s surgery, multiple MRIs revealed widespread brain damage. In mid-November, Brian Cuthbertson, the chief of critical care at Sunnybrook, took responsibility for Rasouli’s treatment. He told the family that an escalation of medical care was inappropriate. It was time to let go.

The Rasoulis were stunned. Hassan had been a healthy, vigorous man. He had walked into non-emergency surgery under his own volition and caught a bug from the hospital, and now that same hospital was saying they wanted to let him die? As a practising Shia Muslim, Salasel believed that life was a sacred gift. As a doctor, she thought it was too early to reach such a drastic prognosis. When the doctors suggested cutting off life support, she refused to give her consent. She told them she knew her husband was there, somewhere deep inside. The hospital just needed to give him a chance.

  • torontohealthcare

    This is not an argument that happens in other countries- this is a situation entirely unique to Canada, and one which unfortunately could bring into question the entire notion of universal health care. In the USA, the patient would be kept alive for as long as that patient’s HMO would fund the treatment or for as long as the patients family could afford to continue- this is true of most of the world. If this family were asked to pay even a fraction of the costs associated with keeping this man alive, would they? In Canada, these cases are not uncommon unfortunately. No one is saying that this story is not tragic. But really, just because the technical term of persistent vegetative state no long applies- does that mean this patient will ever regain “a meaningful quality of life”. If these cases are allowed to go on- if patients are given the right to demand 88 year old men or a 46 year old man with terminal cancer are to be kept alive indefinitely at an astronomical cost to our health care system, which is already pushed to the limits economically, this is certainly not sustainable! I work in health care, I have seen the misery in the faces of grown men who can’t so much as breath on their own, let alone wipe their own behind- don’t be mistaken, these patients are not kept alive for the benefit of the patients, they are kept alive for the families who just cannot let go.

  • Veronique

    I absolutely agree with you. I also work in the medical field, and if we asked all doctors working in an Intensive Care Unit, most of us would not want to be resuscitated at all cost.

  • wrench

    when does it become treatment or experiment? Yes researcher’s have found something happening but is it really life? If this was done to someone in Germany in 1942 the doctors would have been up on charges. Is it a responsible society that allows this to continue and to allow the “lay person ” to make the decisions about what is futile care? No doctor would ever put the hospital “needs” ahead of the patients needs, as this article seems to hint at .The main question should be not the quantity of life but the Quality of life .Will keeping this gentleman alive improve His quality of life ? or is it just keeping his families idea of quality alive?

  • S.D.

    Thank you for this insightful article which sheds light on the practices of doctors at Sunnybrook. . I doubt any doctor at Sunnybrook would treat their own family members as they have treated Mr. Rassouli and his family. I guess we now have our own Canadian version of “death panels”.

  • C.C.

    ..I apologize for my poor grammar. In terms of the CT scan, he was admitted with a CT scan, deteriorated over the next several hours, another scan was ordered approximately 10 hours after he arrived, but he was not taken for THAT scan until 2 hours later! Anyone in emergency should be given priority.

    The lack of care could happen to anyone – your father, your mother, your sister, your son; at any time, at any hospital. We need to become doctors for our loved ones. It isn’t right.

  • Kristina

    What an awful tragedy for this family. However, from a medical and ethical standpoint, what is this man’s quality of life? Lying in bed, unable to speak, move– beyond his eyes and hands– or have any meaningful interaction or activities: this sounds to me like hell on earth. Were I in his shoes, I would want to be let go into the great beyond, even if I was minimally conscious. This is not a life. I agree heartily with the previous poster who reflected that these patients are kept alive not for their own benefit, but for that of their poor families who cannot let go.

  • Madison

    I think that this family is extremely selfish. There is no quality of life left, while others who could have chance at life are turned away from a much needed bed that he is using and costing a million dollars a year? Not to mention legal costs to take it to the supreme court. It is so wrong, truly disgusting that we are keeping this person alive when there are others that could use the bed and the care. If the family wants him to live, bring him home and pay for care there. If they were actually paying for it maybe they would recognize it is ridiculous to keep him alive. Let Go family. It is time. Give someone a chance who will actually have a quality of life. If this makes me sound mean, then so be it. I am infuriated that this actually goes on in this country – to mirror the statement of another poster, in the USA they would pay for the care as long as they could and then it would end. Deal with it people, enough it enough and it is time to let your father / husband rest in peace. What options would they have back home if they hadn’t moved to Canada?

  • Karen

    Anyone who is judging “quality of life” is basing it on their own ablist beliefs. There are people with disabilities who experience life in their own way and are happy to be alive. The I would “rather be this way” cannot make these comments until they themselves are in that actual situation or until it is their child that they are making the decision for. What about the brilliant Stephen Hawking who gradually lost the ability to use his arms, legs and eventually voice. Perhaps the “disability” is not with those who are disabled, but rather with the short coming of the able-bodied…

  • Mona N

    I was touched by your article very much and would like to help this family. Would you please provide a link on how one can assist this family?

  • Jane

    “these patients are not kept alive for the benefit of the patients, they are kept alive for the families who just cannot let go.”— True

    My mother had the same situation. We kept paying $1 million RMB to hospital in Beijing. 8 months later, she was still gone. But to the family, she was in hospital, she was still alive. My father talked to her every day in the hospital while she was in a coma. She never woke up ever since she was in hospital that day.

  • Jane

    My girl friend had the same brain cancer. She refused to do any operation. She died 2 years ago that year when my mother died.

  • Chanel

    Ontario already has a system im place to deal with this issue. The doctors caring for Mr. Rasouli refused to apply to the Consent and Capacity Board. They are using Mr. Rasouli in an attempt to change the law. They want to be able to make unilateral life and death decisions without having to obtain lawful consent or worry about being sued. You can bet the doctors are not paying the legal costs!
    People are not safe in hospital. Doctors are covertly writing “Do Not Resuscitate” orders in the chart of helpless, trusting patients and the patients are dying.
    Doctors know that few families will ever see the chart and their co-workers will not blow the whistle on them. This will only stop after a doctor is charged with manslaughter.

  • C.C.

    Chanel, I agree with you – based on my experiences of losing my father and the utter lack of care given. People do not understand unless they experience it themselves (which I truly hope they never do).

    The Health Care system is broken with many stressed out, over burdened health care professionals still working. Whatever happened to “do no harm” and striving to provide the best quality of life possible.

    I also feel saddened for the nurses that have a heart of gold, would do anything for their patients, but are stuck due to the arrogance of “doctor knows best” attitudes.

    In regards to Mr. Rasouli. His family never gave up hope on him and rightly so.

  • emac

    Many commenters here talk about the lack of “quality of life”. We are judging people’s worth based on their lack of ability to do what? Contribute to society? Move? Communicate? Many with drug or mental health issues are in the same position. Sometimes it’s a temporary condition with no reliable prognosis. It is an incredibly subjective bar with which to judge the value of a life. More abhorrently, it is *our* view of the value of their life.

    As the recent study from Western University suggests, these individuals could very well understand, but are limited in their ability to communicate & respond. I could not conceive of killing or leaving to die someone who understands everything that is going on around them, but because of ‘resource constraints’ decide to let it happen anyway. It’s killing a sentient person because they’re gagged & bound by a medical condition. It’s unconscienable.

  • Z.A.

    “What options would they have back home if they hadn’t moved to Canada?” Madison, please take your uninformed and misguided opinions elsewhere. Iran has both public and private health care systems. The family wouldn’t be left without options, and the same care could likely be arranged in a private hospital.

    Now let’s not forget there’s a possibility that “back home” the hospital may have followed procedure more strictly and perhaps prevented the infection in the first place. This article doesn’t really clarify why the infection occurred in the first place (was it just the patient’s immune system or did staff ignore some form of protocol? I doubt the writer would be able to find out anyway).

  • democracymustprevail

    Doctors in Canada damage their patients and then pretend they are unsalvageable or that their live is unworthy of living and must be killed. It happens in all provinces but Ontario is a leader in this field.
    There have been 27 cases brought in front of the Consent and Capacity Board in all, from 2003 till 2012, by doctors who wanted permission to have their patient’s lives terminated by “letting them die”.

    In 26 of them, the doctors were given the OK to put their patients to death against their family’s wishes and against their own wishes.

    The one exception happened in 2003, at the very beginning of this system, probably by mistake.

    In all cases, the people to be killed were 75 or over and in all cases, I have no doubt, most of the patients’ condition that was used as justification to allow the doctors to ask permission of the court to finish them off, was caused directly or indirectly, intentionally or unintentionally, by the very same doctors who had decided not to treat those patients from the get go. I read all the end-of-life decisions of the Board and of every Court. In Rasouli’s case thay had “an incident” diuring the operation and needed to intubate him. That probably came with the dirty tube and the infection they gave him. He did not come ready infected in the Hospital or they would have known about it in pre-op tests.

    12 of those cases in the CCB were heard in 2011 and 2012 alone. It is systemic betrayal and deceipt of the population who thinks that their tax dollars ensures their Health Care when they need it most. It looks like healing by killing is becoming pandemic.

    Lately they have taken to putting babies to death also. Two such cases ocured in 2012 alone. The state decides who should live and who should die. In the Rasouli case, they gave him meningitis in the Hospital. They caused him the codition he was in when they wanted to off him. It is the way that is available to doctors to erase their own malpractice evidence and to say: “we had permission from the court to do what we did”.

    It is stunning. Who gave these judges the permission to decide to have doctors kill their patients? By what authority are they doing this?

  • `Joyce Riettie

    A clergyman who a friend of mine arranged to meet with me mentioned this Supreme Court case to me. At this time, My 65-y-o highly intelligent husband is in our local hospital and I am being put under pressure to “pull the plug”. As is commonly the case my husband’s present condition has been adversely affected by “errors of judgement” from medical-staff at 2 of the 4 hospitals he has been moved to. At this time my husband has been ona ventilator for several months but has been succesfully weaned off it twice and then the two above-mantioned “acts” have occured. My husband of 32 years is in ICU in a York Region hospital. He is alert, recognises all visitors by name and beams whenever someone (particlarly the lovely nurses) come to see him Being on a ventilator having had a tracheostomy, he can only whisper -
    but can be usually understood together with an alphabet. My husband Loves watching the old movies, I read to him and we have recently started playing board games. At times confused and disorientated – I am advised that this is common for people in long-term ICU care. I am not privy to see what medications my husband is taking but know that pschotropic drugs such as Haldol have been administered.
    My husband`s only wish in life is tosee his three grandchildren grow up and in his present condition he is very much able to do so. My wish as his POwer of Attorney for Care is to get Dennis weaned very slowly of the ventilator, get in to West Park for the training to allow him to come home under the care of the 5-mandated trained persons. However to do so, he must be permitted to continue trach-mask trials at a very gradually increasing as-tolerated pace. The RTs say he`s able to do so but the three rotating doctors have decided not to permit this and are pressuring me to remove my beloved husband of the ventilator. It looks as if I am being forced to engage a lawyer to demand the right to live for someone who totaly accepts his current limitations. Yes, I am seeing baby steps of improvement and am working hard to improve his small motor skills at present. This is restricted in part by two fingers having been affected by gangrene after beeing admisinstered a drug to increase his blood-pressure which cuts off the blood circulation to his extremeties. God willing Dennis will continue to improve. This is partially contingent on the 3 rotating Intensivists resuming his slow weaning off the ventilator. There must be many more such cases in Ontario. Much of these issues are due the denial of our very-capable Ontario Ombudsman Andre Marin,to have the Ontario hospital system under his `watch. This is in fact so in other Canadian provinces. Hospital definitely require neutral supervision by our renowned `watch dog` Andre Marin whose large neutral team supervise many other organisations.

  • democracymustprevail

    Dear Joyce
    Please be informed that legally you have a right to demand to be told what medication your husband in on. This is another way of the doctors to opress and supress the families of their targeted victims. They will not disclose the treatment. As his Power of Attorney you have a legal right and by the way, as his wife you have the same legal right and obligation to know exactly what they put him on, for what reason, see alll the test results and ask for a copy of his entire medical Chart so you can take it to a doctor you trust who would inform you if what they are doing is the best treatment to heal him or to kill him. You are by law his substitute decision maker and you have the right and the obligation to give or withhold consent on his behalf. The consent must be informed. THEY HAVE TO DISCLOSE EVERYTHING TO YOU. Too bad if they don’t like it and they usually don’t. You’ll hear every excuse under the sun as to why they cannot provide you with the information you need so get prepared before you go and ask for it. All you’ll hear is excuses, then denial and then hostility and rejection. All Hospitals are trained to gueard against the patients and their families. It’s unwritten policy. If they make trouble, ask to see the written policies regarding disclosure of Patient’s Records to the patient or his substitute decision maker. When you see the Policy, ask them to give you a photocopy. You need to keep parallel records of your own.

  • anonymous

    For this post

    “Chanel, I agree with you – based on my experiences of losing my father and the utter lack of care given. People do not understand unless they experience it themselves (which I truly hope they never do).

    The Health Care system is broken with many stressed out, over burdened health care professionals still working. Whatever happened to “do no harm” and striving to provide the best quality of life possible.

    I also feel saddened for the nurses that have a heart of gold, would do anything for their patients, but are stuck due to the arrogance of “doctor knows best” attitudes.

    In regards to Mr. Rasouli. His family never gave up hope on him and rightly so.””

    Nurses actually control most hospitals. A lot of them push for making patients DNR coz that means less work for them, I am sick of all of that and being on break most of the time when at work. Please dont attack the doctors when u dont know enough

  • Kate

    It is surprising to me that some of these comments suggest religious reasons to resuscitate dead people. Sometimes it is your time to go. I’ve had patients resuscitated multiple times in the course of a week until eventually a resuscitation fails. It really seems like fighting nature.

    In my experience it is typically the opposite of what has been described. Most doctor’s do not want to accept when there is not much they can do for the patient. They suggest further interventions for people who have already had poor outcomes, often very frail elderly people. Doctors are the only ones on our team who can have the patient’s family fill out the DNR form and they seem to avoid that conversation at all cost.

    I’m not saying a family should be pressured to sign. I’m saying most are not given the time to have a conversation about it. Also, most are not really aware of what the expected outcome from resuscitation is for their loved one. Many frail, complex patients will need repeated interventions. They are kept in and out of the ICU instead of in a more comfortable environment.

    Also, most of the time when I’ve seen a change in the orders occur, it has been from DNR to full code when the patient’s family has assumed the role of decision maker. Sometimes the patient previously expressed desire to be DNR but their family would like them resuscitated.

  • Susan edgar

    That is so untrue..I have seen medical doctors withdraw life support on their family members all the time. It is torturous to be on life support…your muscles contract and are so painful, you develop horrible sores, you have horrible spasms as you are trying to cough up secretions that build in your lungs…the list goes on. As a nurse I have seen this time after time. Also the money we are spending on futile medical treatment is being lost to preventative medicine. Now OHIP will only pay for a physical every three years. There could be many missed illness in that time. Let’s use our resources wisely. God bless this family…but they are doing this for them not the patient.

 

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