“Part of what families are saying is ‘my father was a veteran, he paid into this system for 60 years and you’re not saving money off my father now.’ They don’t trust the doctors. But we are not actually dealing with what is causing the tension.”

Your beloved family member is lying in a hospital bed fighting desperate odds.

Doctors recommend all heroic measures be stopped. Any hope of a meaningful recovery, they insist, is over.

But you know something they don’t. You believe your loved one would want every chance at life.

In Ontario, intractable, life-and-death disputes between physicians and patients’ families sometimes end up before a unique provincial body charged with wading into complex issues of medicine, ethics and faith.

The little-known Consent and Capacity Board (CCB) — the only one of its kind in North America, perhaps anywhere — is a working laboratory for the most pressing issue facing Canada’s healthcare system: the end of life.

When a physician’s treatment proposal is challenged by a family member whose loved one can no longer communicate their wishes, doctors can make an application to the CCB. The Board then convenes a hearing within seven days, often in hospital board rooms, headed by a lawyer, a public member and a medical professional, typically a psychiatrist.

The panel’s job is a mix of legal arguments and character analysis. It must ultimately determine an incapacitated patient’s “prior wishes” or “best interests.”

The panel must then issue a binding order within 24 hours of the hearing’s conclusion — a remarkably fast and economical process relative to the courts.

A Toronto Star/Ryerson University analysis of all 45 published end-of-life decisions issued by the board over the past 12 years reveals decisions that have trumped family wishes, overturned physicians’ medical recommendations, decided how and when people die and controlled their most precious final moments.

In more than three quarters of the cases, patients had not clearly communicated their wishes for treatment at the end of life. Deciphering end-of-life wishes without clear directives left doctors, families and CCB tribunal members asking: What would they have wanted? What was in their best interest?

Of the 45 cases, the vast majority — more than 80 per cent — happened in hospitals (the rest were in long-term care and retirement facilities). Of those hospital-based hearings, intensive care units were the setting of the dispute about 60 per cent of the time. In nine of those cases, patients were in the ICU for more than a year.

By policy, the financial implications of ongoing care for critically ill patients were never a consideration in the board proceedings or orders.

The CCB sided with physicians in 84 per cent of the hearings involving disputes with patient family members.

Still, the CCB triggers strong and divided views within the medical community. Skepticism and distrust are shared by many physicians interviewed who say the board ignores medical standards of care and should have more clinical physicians represented on the panels.

But Canada’s highest court and leading health policy experts hail the CCB model as a leader in North America, providing a swift and balanced alternative to the courts at a time when the country is facing a tidal wave of aging Baby Boomers.

“It has both the responsiveness and speed but at the same time it also has independence and neutrality,” says Thaddeus Pope, director of the Health Law Institute at Hamline University in Minnesota and one of North America’s foremost experts in end-of-life decision-making and patient rights.

In other provinces, time consuming and adversarial court hearings place justice and accountability beyond the reach of most families.

Rarely is there time to wait. Many die anticipating a court date.

“The CCB has more expertise in end of life cases than all other courts in Canada combined,” says Mark Handelman, one of Canada’s leading end-of-life lawyers who has adjudicated and argued more end-of-life cases than anyone else.

“(Doctors) have to know the patient’s values and beliefs and that’s where the hospitals fall down. Perhaps the public can be excused for not having these conversations. But the health-care system has no excuses.”

Hospitals, where about 70 per cent of Canadians died last year, have their own policies around end-of-life care. But they are inconsistent, often unclear and don’t provide the scrutiny of an independent arbiter.

Religious convictions — and their intersection with medical opinion — were sources of end-of-life dispute in half of the hearings, the Star/Ryerson analysis shows.

“My husband was a good man,” says 88-year-old Maria Watson as she flips through love letters from her husband, Desmond. Her wedding ring is loose on her thin finger.

“He believed that you go when it was time. God chooses.”

They had been married 68 years. Desmond, already suffering with dementia and other ailments, was first admitted to an Oakville hospital in 2011 with pneumonia.

Doctors immediately concluded, “there was no point to keep him alive,” Maria recalls.

To discontinue life-sustaining support violated the Catholic faith that coursed through their veins. For them, it was akin to murder.

Maria became locked in battle with Desmond’s medical team.

She never left Desmond’s side, staying with him day and night for nearly three years.

When doctors brought Desmond’s case to the CCB in 2011 seeking consent to remove life-sustaining treatment, Maria won.

Months later, doctors called the board again. Again, the board sided with Maria. He died quietly in hospital in late 2013.

“The board honoured my Desmond,” she says, her fingers running over one of his letters.

The medical team who treated Desmond at Oakville Trafalgar Memorial Hospital declined comment.

End-of-life conflict resolution plays out differently in provinces where no consent tribunals exist.

In Nova Scotia, doctors wanted to place a do-not-resuscitate order on the chart of Moorix Yeung, a 46-year-old man hospitalized with gastric cancer in 2006.

His family resisted and took the province’s Capital District Health Authority to court.

The dispute reached the province’s Superior Court where bioethicist Francoise Baylis served as an expert witness.

“I spoke to the physicians and while I was there in the audience waiting to testify, I turned to him and said, ‘What are we doing here? This has to be the worst place and the worst way to have a family cope with whatever is happening with their loved one,’” Baylis says. “I think that’s the tragedy — that you’re standing up in a court arguing and fighting when quite frankly you should be at the bedside.”

Jocelyn Downie, who teaches health law at Dalhousie University in Halifax, says the challenges go far beyond the financial burdens of lawyers and court hearings.

“It’s the emotional resources in asking people to be engaging in litigation when a loved one is dying, is desperate,” she says. “The government has a responsibility to recognize that there is harm being caused by the lack of a tribunal.”

Catherine Gaulton, general counsel for Capital Heath, would only comment in a broad context, saying that these cases are extremely rare and there are too few disputes to justify a system like the one in Ontario.

Like most end-of-life cases that end up in a courtroom, Yeung’s case was never decided. He died during the proceedings.

The most heart-rending and complex end-of-life cases are those involving the very young.

Of the 45 CCB cases analyzed from published decisions, five involved infants. Each posed a unique legal challenge: they had no prior wishes or values, including religious.

EJG — as he is identified in one CCB decision — had suffered brain damage during his birth in 2007 and was in a vegetative state at Hamilton Health Sciences.

Doctors recommended removing life-sustaining care. His parents believed in miracles. God would heal him, they said.

The CCB ruled that it was in EJG’s best interest to remove his ventilator. His bones were brittle, both his hips were dislocated, and his arm was fractured, they said.

Former CCB vice-chair Handelman presided over the case at the time.

“Unrelenting faith in divine intervention might be Mrs. G and Mr. G’s belief,” wrote Handelman in the decision. “EJG did not have any values or beliefs.”

EJG’s parents made treatment decisions based on their own beliefs, not his, he concluded. The infant was weaned from life support the next day and died shortly after.

Of eight CCB cases brought forward at London Health Sciences Centre (LHSC) — the most from any hospital in the 45 cases — four involved infants.

Most famous is the case of “Baby Joseph” Maraachli, who was born with a degenerative brain condition. His family wanted to prolong his young life. Physicians said the infant would not recover from his vegetative state.

The CCB sided with the doctors.

Parents Sana Nader and Moe Maraachli decided they wouldn’t stop there, saying they wanted their son to die “on God’s time,” rather than having his breathing tube removed by physicians.

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They went to the media, and their story gained traction in the United States. The conservative Christian movement in the U.S. raised money to airlift him to a Catholic hospital in Missouri where a tracheostomy surgery was performed to help the child breathe.

Baby Joseph died in his Windsor home seven months later, in September 2011. He was 20 months old.

“Applications to the CCB are rare and provide an objective review of what are always very difficult and challenging care decisions,” said a London Health Sciences spokesperson in a written statement. “Our focus continues to be on supporting our patients, families and care teams through these most difficult care decisions.”

There is a bright, sterile tunnel underneath University Avenue that connects the five hospitals that line the street. This is where medical equipment is stored. It’s also where Kerry Bowman’s office is located.

Bowman is the medical ethicist for Mount Sinai Hospital specializing in end-of-life decision-making which he describes as a “nebulous, crazy cloud, very difficult to bottle.”

Toronto had the most hearings of any region, with 13 cases in total (there were a total of 23 in the GTA including Mississauga, Brampton, Burlington and Ajax).

Bowman believes in the CCB model. But, by design, the board does not consider what Bowman says is the most critical issue in end-of-life care: the cost to the medical system.

“Part of what families are saying is my father was a veteran, he paid into this system for 60 years and you’re not saving money off my father now,” says Bowman. “They don’t trust the doctors. But we are not actually dealing with what is causing the tension.”

Of the 45 cases, the longest hospital stay was three years for a patient who was in a vegetative state due to a stroke, and was not expected to ever leave the hospital. Experts estimate one night’s stay in an ICU can cost about $1,500.

“We’re spending, in effect, to torture our most vulnerable citizens,” says Handelman. “The consequence is, aside from what we will inflict upon those individuals, other people need surgery but it has to be delayed because there is no ICU bed for them.”

Intensive Care Specialist Dr. Laura Hawryluck walks past a patient and stops in the hallway of the Toronto General ICU.

“Tubes in every hole,” she says looking at a patient whose mouth is filled by a ventilator as tubes snake up his arms and into his stomach.

Another patient’s feet peek from beneath the sheets. They are black, like coal. “They are rotting off,” she says. “Fingers and toes die first.”

In 2003, Hawryluck was the physician named in the only appeal to the court of a CCB end-of-life decision. She applied for consent to remove life-sustaining treatment from 81-year-old Joyce Holland, who suffered from dementia and pneumonia and was kept alive with a feeding tube and ventilator.

The Board granted Hawryluck’s wish to cease heroic measures in Holland’s treatment.

But Holland’s two daughters appealed to Ontario Superior Court which reversed the decision.

Hawryluck was ordered to care for Holland until she died in the same ICU a year later.

“This goes against our fundamental oath, the thing that defines us — that first, do no harm,” says Hawryluck. “Those aren’t just words to us.”

The relatively small number of end-of-life cases brought before the CCB in 12 years suggests many doctors are reluctant to file applications.

Several physicians interviewed say they have philosophical issues with the board, in large part because there is typically no intensive care specialist on the panel who understands medical evidence.

“A lot of cases are not brought forward because there’s not a lot of trust for the board,” says Hawrylyck. “The doctors don’t want to see themselves turned into Goliath.”

Lora Patton, a senior CCB lawyer who has conducted numerous end-of-life cases, disagrees. She says this reflects a large misunderstanding about the role of the board.

“We’re not doing a medical review of the facts. We’re not doing a second opinion,” she says. “If they can explain it to family members in a way that achieves informed consent, they should be able to explain it to the board as well.”

Some legal experts say the reason so few end-of-life cases end up before the board is that doctors typically only bring forward cases if they think they have a good chance at winning.

“Nobody likes having their professional opinions examined under a microscope in a public forum, and especially by people who are not their peers,” says Handelman.

Julie Cheah says Sunnybrook physicians caring for her husband, Mann Kee Li, didn’t mention anything about the CCB four years ago when she was locked in dispute over his treatment for cancer.

Cheah challenged a “do not resuscitate code” placed on the chart of her 46-year-old husband without, she says, her knowledge or consent.

Li, a father of two young sons, had made it clear he wanted all extraordinary measures to stay alive for them.

“He just wanted to last as long as he could,” his wife says.

She spent $20,000 to file a court case seeking to have the code removed.

By the time a CCB hearing was scheduled at the hospital, it was too late. On the morning the hearing was to commence, Li died.

“It felt like they had tricked us. That’s the part that makes me crazy.”

Sunnybrook declined to comment on Cheah’s story.

Sunnybrook physicians also did not call on the CCB when faced with a high-profile end-of-life dispute last year involving Hassan Rasouli, who suffered a brain infection that left him in a state of minimal consciousness. Physicians sought to remove full-code care and treat him with palliative medicine — a position resisted by his devout Muslim family.

Bypassing the CCB, the doctors presented an ultimatum: either take us to court or accept our decision to withdraw life support. When both the Superior and Appeal Courts ruled that the doctors should go to the Consent Board, the doctors instead took the case to the Supreme Court of Canada.

Canada’s top court reached the same conclusion: take the case to the CCB.