Life or death - who gets to decide?
Published Saturday, February 4, 2012 7:02PM EST
Last Updated Sunday, October 20, 2013 2:06PM EDT
Hassan Rasouli, an electrical engineer, brought his family to Toronto from Iran, in the spring of 2010.
Five months later, what was supposed to be routine surgery for a benign brain tumor left Hassan unconscious. Bacterial meningitis had infected his brain.
His daughter, Mojgan Rasouli, says that within weeks, their surgeon advised the family to remove the mechanical ventilator that was keeping her father alive. Her mother Parichehr Salasel, a family physician licensed to practise in Iran, felt that the doctors were giving up on her husband too soon.
"My mother is a doctor and she knows it," Mojgan told W5.
By January 2011, the family believed that they were starting to see signs of improvement in their father. But his doctor's diagnosis was that Rasouli was in a Persistent Vegetative State (PVS), an irreversible loss of consciousness from which he would not recover. According to court documents, after three months his wife was being pushed hard to stop treatment. Doctors sought her consent to remove Rasouli from the ventilator and transfer him to palliative care.
Mojgan remembers just how difficult that period of time was. "A lot of pressure. Look, there are three of us we are sitting in a room. All of the doctors from other departments, okay be sure that your father will die in a very good situation. Don't worry."
With Rasouli in a coma, his wife is his substitute decision-maker – able to carry out his wishes, including whether or not, under the circumstances, he would want everything possible done to keep him alive. Salasel would not consent to removing him from the ventilator.
The family was advised to get a lawyer. It was only then that the Rasouli family learned about the Consent and Capacity Board (CCB).
Consent to let someone die, to not resuscitate, usually happens after consultation, and sensitive negotiations between doctors, patient and family. But, in Ontario, when there is no agreement, the Health Care Consent Act requires referral to an independent, expert tribunal called the Consent and Capacity Board.
A W5 investigation has discovered that at Sunnybrook Hospital critical care doctors rarely refer end of life disputes to the CCB, believing their medical opinion about withdrawal of futile treatment should be the final word.
In the Rasouli case, as in others researched by W5, Sunnybrook doctors refused to go to the tribunal. The dispute over his future and who had the right to decide was referred to the Ontario Superior Court in February, 2011. The doctors argued that Rasouli's condition was hopeless, that they were not required to provide treatment of no medical benefit, and that they did not need consent to withdraw treatment.
The court rejected that argument finding: "The physician's proposal to end life sustaining treatment to Mr. Rasouli, a decision which is supported by the hospital and opposed by Mr. Rasouli's substitute decision-maker, must be referred to the Consent and Capacity Board."
Until the CCB reviewed the dispute about whether or not to pull the plug on Rasouli, the doctors could not remove the ventilator. But the doctors refused to refer the case to the tribunal. Instead they appealed the lower court decision to Ontario's Court of Appeal.
In June, 2011 the doctors' appeal was rejected reaffirming that "if (the family's) consent is not forthcoming, the appellants (doctors) proposal must be referred to the Board."
Even after the Appeal Court decision, the Sunnybrook doctors refused to go to the CCB. Instead, they have appealed to the Supreme Court of Canada. Leave to appeal was granted in late 2011.
The doctors memorandum of argument to the Supreme Court states:
"This case raises an important and unresolved question about consent to medical treatment-namely, whether consent is required to withdraw or withhold medical treatment that provides no medical benefit to the patient.
"The applicants' position is that consent in such circumstances is not required even if the patient will die. It is an issue of unquestionable and pressing national importance.
"If the Court of Appeal's decision stands, patients and their surrogates will be legally entitled to insist upon receiving an array of futile treatments."
W5 asked the doctors involved in the case and Sunnybrook's CEO for an interview, but the requests were rejected. However they did respond via e-mail.
Dr. Brian Cuthbertson, Chief of Sunnybrook's Critical care department, and one of the doctors named in the appeal replied: "I am afraid with this being in the Supreme Court, my lawyer is very clear I am best not to give interviews to the press."
Dr. Barry McLellan, Sunnybrook's President and CEO, while acknowledging the importance of end of life issues, also declined on advice of counsel writing: "We would like any further comment from Sunnybrook to be informed by the results of this hearing "
A date for the Supreme Court hearing has yet to be scheduled.
All the legal wrangling has had one positive outcome for the Rasouli family. While the court decisions and legal briefs have been flying, Hassan Rasouli remains on the ventilator that is keeping him alive. His family visits daily.
Right from the beginning, his wife, Parichehr Salasel, has questioned the diagnosis that her husband is in a vegetative state and has resisted enormous pressure to let her husband die.
What keeps her going?
"The request of my husband : ‘Keep me alive, keep me alive'. He told me, he told me with his eyes," said Salasel simply.