A faint smile flickers over Hassan Rasouli's face when family members update him on their landmark legal fight to keep him on life support. Or, at least, so the Rasouli family believes.
"We reassure him everything is going well," said his 29-year-old daughter, Mojgan. "My father has become a representative of the value of life. "
But on the other side of a chasm that divides the family from the medical team at Sunnybrook Health Sciences Centre that keeps Mr. Rasouli alive, doctors see a man with no quality of life and no hope of recovery.
To them, Mr. Rasouli's facial movements are involuntary and mechanical; they believe there is no realistic course of treatment to offer, aside from a dignified death.
The result is a clash between deeply religious Islamic family members who believe life must be maintained at all costs, and a medical team that believes keeping Mr. Hassan alive borders on torture.
Two critical-care physicians at Sunnybrook, Brian Cuthbertson and Gordon Rubenfeld, have taken the case to the Supreme Court of Canada.
On Monday, the court will hear arguments in the precedent-setting battle. When it releases its ruling, likely several months from now, it could decide that doctors are free to withdraw life support unilaterally. Alternatively, the court could say the wishes of a patient and his family are paramount. Or, the court could opt for a middle road, giving the last word to a board of neutral arbiters.
Lawyers who work with mentally disabled or elderly clients are looking to the Supreme Court to bring clarity to an uneven, emotionally fraught area of law.
Jan Goddard, a Toronto lawyer who specializes in the field, said there has been a strong move in recent years for people to create documents expressing their wishes for when they would want to be taken off life support if they are ever incapable of deciding themselves.
Ms. Goddard said the Sunnybrook case could throw a wrench into these efforts.
"Termination of treatment that supports life is probably the issue most commonly raised by clients making advance directives," she said. "I wonder what those conversations might be like between lawyer and client – or a person and his or her substitute decision-maker – if the court agrees with the doctor's position that consent is not required?"
Doctors and legislators also hope the court decision will provide much-needed guidance for dealing with people whose brains or minds have been irretrievably damaged.
"Every single intensive-care unit has at least one patient who is not benefiting from being kept alive," said Mark Handelman, a Toronto lawyer who represents families and doctors in end-of-life cases.
"Listen, I understand why politicians aren't debating this – nobody wants another abortion-type debate," Mr. Handelman said. "But we have to address it. Frankly, I think this debate is going to make the abortion debate look like a Tuesday tea party."
Patients who are in a state of severe brain deterioration, he said, cause moral distress to both medical staff and family members who are trying to do the right thing.
"Those beds cost roughly a million dollars a year, and we have an aging population of yuppies with a great sense of entitlement to everything – including health care," Mr. Handelman added.
The clash of interests has been coming for a long time. Medical science can slow the process of death in ways that were once inconceivable. At the same time, ever-more-sensitive instruments can detect minute variations in the brain activity of deteriorating patients.
The two advances have collided, creating pressure to keep patients on life support based on their faintest responses to stimuli.
Anand Kumar, a Winnipeg physician with experience in end-of-life treatment, said it is theoretically possible to conduct one organ transplant after another, and hook patients up to a succession of machines that remove fluids, cleanse blood and replace failing processes indefinitely.
"To cut into somebody's flesh with the idea that you are helping them is one thing," Dr. Kumar said. "But to do it with the idea that you are not helping them, that you are basically being asked to inflict disfiguration or torture on someone, is one of the most distressing things that intensivists or ICU nurses deal with."
Many families are relieved when a doctor advises them that it is time to discontinue life support for a loved one, Dr. Kumar said. But it is vastly more difficult when familial affection or religious conviction runs up against medical opinion.
"I can take a guy's heart out and keep it beating on a stick. And if you put a gun to my head, I could even take a person who has been dead for 20 minutes and reanimate him. But when people say that they want everything to be done, at some point you have to say: Literally, everything? Or, do you mean, everything reasonable?" Dr. Kumar said. "Because those are two different things."
When families and doctors are at loggerheads, the result in most provinces is a protracted court fight during which the patient dies, bringing the process to an end without resolution, and in which decisions are made in a random, distorted manner that varies from family to family and doctor to doctor.
In Mr. Rasouli's case, a post-surgery infection attacked his brain in late 2010. Doctors later informed the family that recovery was unlikely and they intended to withdraw life support. The family obtained an injunction preventing it.
An Ontario Superior Court judge later ruled in their favour, directing that a board unique to Ontario – the Consent and Capacity Review Board – should determine the proper course of action. This decision was largely upheld by the Ontario Court of Appeal, leading to the appeal by the Sunnybrook doctors.
Mr. Rasouli's resilience and the skill of his medical team have made him an exception simply because he has survived long enough for his case to work through every level of court.
"My father had an accident that was not his fault," Ms. Rasouli said. "In his eyes, all of us can see that he wants us to help him and keep him alive."
Last year, Adrian Owen – a neurologist at the University of Western Ontario's Brain and Mind Institute – gave the family more hope. He discovered modest signs of brain activity when Mr. Rasouli was asked to follow basic commands, such as imagining a game of tennis.
Partly on the basis of his findings, Mr. Rasouli's diagnosis was changed from permanent vegetative state to minimally conscious state, giving him enhanced possibilities of improving.
"It really vindicated what the family had been saying," said Gary Hodder, a lawyer for the Rasoulis.
The Rasouli family continues to search for new ways to stimulate Mr. Rasouli. They celebrate birthdays and holy days in his room and often discuss the minutiae of their lives.
"We can see his eyes tracking when we show him pictures and movies," his daughter said. "I threw a ball toward his hands and he was able to grasp it. It was very exciting."
Dr. Kumar, however, contends that the difference between being minimally conscious and persistently vegetative is extremely subtle and almost meaningless.
"I can't tell you how common it is for families to see these things when, by any objective evaluation, they don't exist," Dr. Kumar said. "To imply that he is actually getting better and is going to wake up is not based in reality."
Viewpoints offered by central figures in the Rasouli case in court documents
More than medicine
Physicians can claim no expertise, nor right, to decide when treatment is not worth doing. At a minimum, this involves subjective, value-laden evaluations of anticipated medical benefits and medical harms. … Assessing someone's best interests is not wholly a medical matter. It requires understanding and weighing a patient's religious beliefs, values, goals, hopes and expectations.
- Parichehr Salasel. Wife and guardian of Hassan Rasouli
Less than life
The typical persistent-vegetative-state patient can engage in activities such as opening and moving eyes, crying, smiling, frowning, yawning, chewing, swallowing, moving limbs spontaneously without purpose and grunting. Although this behaviour can produce the illusion of voluntary acts, they are not actually so. These are merely reflex response which are compatible with complete unawareness. … It is clear that Mr. Rasouli's family loves him very much and that they desperately want to believe he was conscious and improving. Unfortunately, it is also clear that this coloured their interpretation of his behaviour.
- Brian Cuthbertson and Gordon Rubenfeld. Mr. Rasouli's doctors at Sunnybrook Health Sciences Centre, Toronto
The age effect
Older adults and people with disabilities are most likely to be disproportionately impacted by the outcome of this appeal. Common ageist misperceptions include: older adults, by reason of their age, have nothing to contribute to society; older adults have a poor prospect of recovery; and older adults are presumed to be incapable of making treatment decisions. In a society that favours youth and being young, ageism flourishes.
- Advocacy for the Elderly and ARCH Disability Law Centre
Help or harm
When an underlying illness is irreversible, the extended use of critical care can unnecessarily prolong and exacerbate the process of dying. It would unfairly compel physicians to continue care that is no longer medically indicated, contravening their obligation to do no harm and forcing them to practise medicine below the standard of care. … Critical care does not provide a physiological status quo – it is invasive, intrusive and almost always painful and debilitating.
- Canadian Critical Care Society
The common law concerning the withdrawal of life-sustaining treatment remains unsettled and inconsistent. This uncertainty leaves physicians, nurses and families unsure of their legal obligations and rights. … Consent from the substitute decision-maker is necessary to ensure that a patient's non-medical interests are properly considered. Physicians alone are not, and cannot be expected to be, equipped to fully weigh and evaluate the many factors that comprise a patient's best interests.
- Canadian Association of Critical Care Nurses