“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