National Post

Baby makes medical history with first two-part heart operation at state-of-the-art Edmonton facility

Topher Seguin / Postmedia News

EDMONTON – Baby Isaac, cutest dude in the room, finally opens his eyes, fidgets and yawns, blissfully unaware he’s just made medical history.

The vertical scar on his tiny chest is fading rapidly, along with the big worries of his parents, Calgarians Matt and Shandra Tymchuk, who just can’t stop smiling at their wobbly four-month old.

In October, at the tender age of 16 days, Isaac became the first baby in Western Canada to receive a critical two-part heart operation at the Mazankowski Heart Institute’s new “hybrid” operating room.

The combined procedures — heart surgery and a specialized catheter technique on a weak left ventricle — improved the chances Isaac’s heart will be normal and avoided putting the newborn on an invasive heart-lung machine.

Topher Seguin / Postmedia NewsIn October, at the tender age of 16 days, Isaac (pictured with his parents, Matt and Shandra Tymchuk) became the first baby in Western Canada to receive a critical two-part heart operation at the Mazankowski Heart Institute’s new “hybrid” operating room.

The dual-equipped operating room allows two different specialists to work on a patient at the same time. It just opened last spring.

“We’re really optimistic,” said Shandra, 31, adding she’s grateful for the wonderful treatment at the Mazankowski.

“This operating room made it possible. To think, a year ago, we would not have had this option.”

Truth be known, it’s the second time little Isaac has been at the cutting edge of medical care in Canada.

Shandra was 21 weeks pregnant when she found out in a routine ultrasound that her baby had a congenital heart defect with the left ventricle of his heart not growing.

She flew to Toronto for a very new procedure in utero to help save her baby’s heart. It was just the 13th time this procedure has been done in Canada.

About four months later, Isaac was born at the Royal Alexandra Hospital and days later he was whisked over to the Stollery Childrens Hospital next door to the Mazankowski centre at the University of Alberta Hospital.

Sandra and Matt knew their baby would need more help soon or he would risk losing half his heart. But they also knew full open-heart surgery would be very high risk for their newborn.

Topher Seguin / Postmedia News

Topher Seguin / Postmedia NewsMatt and Shandra Tymchuk embrace their three month old son, Isaac, at the Mazankowski Alberta Heart Institute on Jan. 22, 2015.

“We looked at all the options and we knew this one at the Mazankowski had the least risk and the best chance of a quick recovery,” said Matt Tymchuk, 32.

Cardiac surgeon Mohammed Al Aklabi opened his tiny chest and put small bands on the arteries to regulate the flow of blood out of the heart to the lungs.

Then Dr. Andrea Wan used a special technique to put a stent into the weakened left side of the heart.

“Thanks to the new operating room, we could eliminate the need to put a two-week- old boy on a heart-lung machine,” she said.

Topher Seguin / Postmedia News

Topher Seguin / Postmedia NewsMultiple photos are stitched together to give a sweeping view of the Cardiac hybrid OR at the Mazankowski Alberta Heart Institute on Jan. 22, 2015.

Al Aklabi said the surgery has another advantage. “It buys us time to see how Isaac’s heart will grow,” and determine what further repairs are needed.

In a few months, Baby Isaac will head back for more surgery, but he’ll be older and better able to tolerate the procedures.

The unique hybrid operating room was equipped by $6.6 million in donations from the community, said Joyce Law, who runs the University of Alberta Hospital Foundation. “Our donors in this community are very generous,” said Law.

They will all be pleased to see that “we are doing the most advanced procedures on adults and our smallest patients,” Law added.

Japanese hostage’s mom makes last-minute appeal to ISIS as deadline passes

TOKYO — Junko Ishido shook and struggled to hold back tears as she talked about her hostage son, while camera shutters whirred.

“Time is running out. Please, Japanese government, save my son’s life,” she said Friday to a packed room of journalists, at times wiping her tears with a white handkerchief. In Japanese fashion, she apologized repeatedly for “all the trouble” her son, Kenji Goto, was causing the country and its people by being a hostage of the Islamic State group.

In a somewhat rambling message, Ishido said: “My son is not the enemy of the Islamic State. He went over there all by himself, simply hoping to rescue his friend.”

Ishido, 78, said she felt angry that her son had left for Syria just two weeks after his wife delivered a baby in search of the friend, Haruna Yukawa, but given his character, she understood why.

The two Japanese men are captives of the Islamic State group, threatened with death unless their government pays a $200 million ransom.

“Even before he could walk, even when he was just tottering on his feet, whenever he could be with other children, he would always show great kindness to them,” she said. “So I believe he always cared about other people.”

Militants affiliated with the Islamic State group have posted an online warning that the “countdown has begun” for the group to kill the pair of Japanese hostages.

The posting which appeared Friday shows a clock counting down to zero along with gruesome images of other hostages who have been beheaded by the Islamic State group.

The militant group gave Japanese Prime Minister Shinzo Abe a 72-hour deadline – which expired Friday – to pay a $200 million ransom for the two hostages. The posting on a forum popular among Islamic State militants and sympathizers did not show any images of the Japanese hostages.

Live well until dying: Push on to provide palliative care sooner during end-of-life care

Peter Power for Postmedia News

This second of a three-part series examines living while dying: How to improve the quality of life until the last breath.

Gerald “Jerry” Dill lay face down and semi-conscious on the operating table as the doctors drilled into his spine.

When cancer spreads to the vertebra, the bones become fragile and can collapse. Nerve roots coming out of the spine get pinched, causing serious pain. For Mr. Dill, the pain came in sudden and furious bursts. Pain that would hit “like a linebacker,” the 67-year-old says. Pain that shouted, “Here I am!”

In December, surgeons drilled into his crumbling vertebrae. Next they inserted a small balloon, re-expanded it and then injected bone cement into the bone, to keep it from collapsing again.

The relief, he says, was almost instantaneous. “I literally got up from the table and walked.”

In 2012, Mr. Dill began experiencing tightness in his chest. He thought he was having a heart attack. The diagnosis was terrifying and grim: stage four prostate cancer that had already spread to the bones.

Mr. Dill started a new round of chemotherapy Monday. He is also receiving palliative care, including pain control and psychosocial and spiritual support to deal with “my psychological and mental attitude towards things.”

“I’m dealing with it well, I’m a fighter,” he says. “But I’m learning not to get too far ahead of myself.” He worries about his teenage daughters, “my joy.”

“My kids are very well aware that this is a life-threatening disease and they spend time with me, they talk with me,” he says.

“They know that I can be out of here at any time,” says Mr. Dill, a man of strong faith. “I’m at God’s calling right now.”

For years, the philosophy was that patients with terminal illnesses received “active” treatment up until the very end, and only then were they offered palliation, or “comfort” care, in the final hours or days of life.

The push now is to provide palliative care sooner and include it with usual medical care.

The goal is to live well until dying, not hasten or postpone death.

More than 250,000 Canadians will die this year. The vast majority will not receive access to high-quality palliative care in their home, hospital, or long-term care facility, because end-of-life care is being virtually ignored in discussions around health reform, even with a rapidly growing aging population.

Watching a loved one die a bad death “turns the promise of a peaceful exit from this life into a lie,” Harvey Max Chochinov, director of the Manitoba Palliative Care Research Unit at CancerCare Manitoba, wrote in a recent commentary in HealthCarePapers.

“For all too many Canadians, that is the lingering memory they carry of their loved one’s death.”

Groups such as the College of Family Physicians Canada say that, as a matter of social justice, all Canadians should have access to quality, end-of-life care.

Demand for residential hospices, most of which rely heavily on charitable donations, is so great people are dying on gurneys in emergency rooms.

Exhausted and emotionally drained caregivers often struggle to get the support they need to care for loved ones at home. Dying patients are languishing on hospital wards, simply because there is nowhere else to send them.

“In Canada right now if you’re at the end of your life and you haven’t been referred to a hospital-based palliative care program or a residential hospice, you are going to end up in hospital. It’s inevitable,” says Sharon Baxter, executive director of the Ottawa-based Canadian Hospice Palliative Care Association.

‘[My children] know that I can be out of here at any time. I’m at God’s calling right now’

Before any change in law regarding euthanasia, the organization says every jurisdiction in the country should move swiftly to improve access to end-of-life care, including hospice care.

The goal of hospice care is to determine what’s important, and what is meaningful, when patients know that no heroic intervention is going to take away their disease.

They are places that celebrate life through death, says Debbie Emmerson, director of Toronto’s 10-bed Kensington Hospice.

“We’ve had football parties here, we’ve had baby showers.” Some patients arrive at the hospice, the former chapel of St. John the Divine, in their finest outfits — full makeup and wig, or their hair done up. “They’re just trying their very best to be as dignified and normal as possible,” Ms. Emmerson says. The hospice has cared for prominent doctors and the homeless, for patients in their 20s to centenarians.

“There are a lot of questions about, what’s going to happen next? Where am I going next? Is there a God? Is there reincarnation?’” Ms. Emmerson says. “We don’t have those answers, but we can certainly sit and listen.”

They call it sitting with suffering — “creating this presence so that you know that you’re not totally alone in this journey that you are having.”

Peter Power for Postmedia News“I’m dealing with it well, I’m a fighter,” Jerry Dill says. “But I’m learning not to get too far ahead of myself.”

Elizabeth (Lynn) Douglas was moved to Kensington in March 2013. She was a vice-president at the Princess Margaret Cancer Foundation, a role she took on after a long and successful private-sector career. The day after she was admitted, the resident doctor went to her room and introduced himself. “We chit-chatted for a minute, and then Lynn turned to him and said, “So, how is this going to go?” her husband, Cameron, remembers. She applied the same attitude towards her diagnosis as she did to her career and life. “She was incredibly pragmatic about things.”

Ms. Douglas was first diagnosed with breast cancer in January 2010. She had chemotherapy and radiation but then the odds gradually started to build against her, and when it was gently suggested she and Cameron visit Kensington, they did so, “never imaging it would come to that,” he says.

They decorated her room with family photos, of Ms. Douglas with her wonderful boys, Scott and Todd. She had her favourite crossword puzzle pajamas and the stuffed animals friends gave her while she was in hospital. They brought in a music therapist who played A Million Stars on her violin.

Ms. Douglas spent five weeks at Kensington. In the last week, he and his sons took shifts, sleeping in her room overnight. “We needed to be there, we needed to ride it out with her.”

‘There are a lot of questions about, what’s going to happen next? Where am I going next? … We don’t have those answers, but we can certainly sit and listen’

Ms. Douglas passed away on April 23, 2013, one day shy of her 64th birthday.
Early in her diagnosis, she told her husband that, “when life has meaning, all is worthwhile.” It helped her accept palliative care as the next, and final, step in her life, he said.

Yet research from B.C. suggests three-quarters of those who die are never identified as people who could benefit from end-of-life care.

Generally, patients require a life expectancy of three months or less to get referred. But for non-cancer diseases, such as advanced heart failure, dementia or chronic kidney disease, it’s difficult to predict when patients will actually die.

“So people with end-stage dementia or the very frail — they need bed lifts. They want to die at home. But there’s nothing out there [for them] if I can’t say with any certainty they’re going to die in three months,” says Dr. Ross Upshur, Canada Research Chair in primary care research.

“What happens is they get the runaround through the system and brutally treated. They get bounced through services, they get bounced in and out of hospitals and anybody who has an older parent that they’ve tried to get appropriate care for knows it,” Dr. Upshur says.

The Temmy Latner Centre for Palliative Care at Toronto’s Mount Sinai hospital provides round-the-clock, in-home care by doctors based not on life expectancy, but on need. Their palliative home care patients are less likely to be admitted to emergency in the last weeks of life, and less likely to die in hospital.

“We can do a lot for people at home, but they have to buy into a certain approach that they are opting not to have the high degree of intervention that can happen in a hospital,” says director Dr. Russell Goldman.

Dr. Chochinov believes good palliative care can address the fears driving support for euthanasia.

But others say there is some suffering even the best care cannot touch.

In a study published in September, researchers examined the frequency and intensity of symptoms in the last seven days of life among cancer patients who were able to communicate and who died in an acute palliative care unit. On a scale of “none” to the “worst possible,” patients scored symptoms such as pain, fatigue, nausea, depression and anxiety.

Despite intense care, some patients still suffered as they approached death.

For a small number of people, Dr. Upshur and others say, a better death will mean a doctor-assisted one.

Some say it is already happening in Canada.

Postmedia News

Tomorrow: Final exit — How Quebec patients and doctors are preparing for legalized “medical aid in dying.”

Prince Andrew refutes sexual abuse claims in historic public denial

LONDON and DAVOS — Prince Andrew, the Duke of York insisted Thursday night that he remained “focused” on his royal duties as he made his first public comments about allegations that he sexually abused a teenager.

Addressing a high-powered audience at the World Economic Forum in Davos, the Duke said he wanted to “reiterate and reaffirm” earlier statements denying sexual contact with 17-year-old Virginia Roberts. His remarks were brief and unsensational, but it was the fact that he said them at all that marked a watershed moment. After yet more allegations from Roberts had emerged in U.S. court papers overnight, he felt he had no alternative but to become the first senior member of the Royal family to make a televised statement denying serious sexual impropriety.

Introducing an event for British entrepreneurs, he said: “Firstly I think I must for the record refer to the events that have taken place over the last few weeks.

“I wish to reiterate and reaffirm the statements already made on my behalf by Buckingham Palace. My focus is my work.”

‘I have seen Buckingham Palace’s recent ‘emphatic’ denial … That denial is false and hurtful to me’

At the end of his speech he was given a warm round of applause by an audience that included Cherie Blair. One guest, who did not want to be named, said: “We all found it pretty awkward. It wasn’t the place or the forum to be addressing personal issues. This is not why people are here and it was pretty uncomfortable.”

The Duke arrived at his Pitch@Palace event, where budding businessmen are introduced to established entrepreneurs, looking relaxed and wearing trainers with his suit to combat the snowy pavements in the Swiss resort. He appeared in bullish mood and, after chatting to the entrepreneurs, mingled with his guests.

They included George Osborne, the Chancellor, who arrived late and missed the Duke’s speech. Tony Blair and Gordon Brown stayed for five minutes to hear the start of the speech and left.

The Duke had spent the day doing his best to carry on with business as usual by holding a series of one-on-one meetings promoting British entrepreneurs, education and science and technology.

But his arrival was overshadowed by Roberts’s first sworn court statement, in which she provided fresh details of her claims to have had sex with the Duke three times in 2001.

They included an allegation that the Duke took part in an orgy with nine teenage girls, including Roberts.

She also claimed the Duke had a “sexual interest in feet,” that she had sex with him while his police protection officers sat in a car outside and that his friend Jeffrey Epstein, a convicted sex offender, was “collecting private information” about the Queen’s son.

In statements released by Buckingham Palace earlier this month, the Duke categorically denied any form of sexual contact with Roberts, now 31, who is attempting to have a plea-bargain agreement with Epstein overturned.

She added: “I have seen Buckingham Palace’s recent ‘emphatic’ denial that Prince Andrew had sexual contact with me. That denial is false and hurtful to me. I did have sexual contact with him as I have described here — under oath.”

The Daily Telegraph

After Winnipeg called worst place in Canada for racism, city leaders admit there is a problem

racism-2

After acknowledging the Treaty 1 Metis land on which he stood, the mayor of Winnipeg took a long, deep breath Thursday and said racism against Aboriginal people is a big problem in his city.

Flanked by 11 social, political and cultural leaders in the prairie city summoned to his office with only an hour’s notice, Mayor Brian Bowman stressed that racism is a problem nationwide, not just in Winnipeg.

But he did not dispute the claim made on the cover of Maclean’s magazine, published Thursday, that claimed “Canada has a bigger race problem than America. And it’s ugliest in Winnipeg.” In fact he went further, saying he hopes Winnipeg can “lead the nation” in eradicating racism.

“Racism and intolerance exists in every community, but we do have a problem in Winnipeg,” Mr. Bowman told the National Post by phone. “Instead of shrinking from the challenge, we need to rise up and we need to do better as a community.”

The article — the reason for his hastily called press conference — said national attention on the death of 15-year-old Aboriginal girl Tina Fontaine last summer has forced the city of 633,000 to face its “festering” racism. Indigenous writer Rosanna Deerchild, who is depicted on the cover, said she is routinely called a “stupid squaw” — a deeply derogatory term for Aboriginal women.

“We’re here together to face this head-on as one community,” Mr. Bowman told the media.

It was a significant step for the leader of Winnipeg and perhaps a critical one for the city’s first mayor of aboriginal descent, though the former privacy lawyer rarely mentioned his heritage during his campaign.

‘I guarantee that right now somebody’s having a racist experience in a restaurant, or on the streets in Winnipeg’

Describing Winnipegger’s reactions to the article, Mr. Bowman told the National Post “the natural instinct is to kill the messenger and attack Maclean’s.”

He noted, however, that he was “impressed” with how few people had done so.

“Most people I’ve spoke with, and certainly the leaders who gathered here at city hall today, recognize that we do have a problem, and we need to do a better job of addressing it,” he said.

Wab Kinew, a Canadian broadcaster, musician and university administrator in Winnipeg, feels the mayor did “the right thing.”

Mike Deal/Winnipeg Free Press

Mike Deal/Winnipeg Free PressWinnipeg mayor Brian Bowman speaking about racism in the city. He was joined by members from across the community including; Elder Harry Bone, Grand Chief Derek Nepinak, Assembly of Manitoba Chiefs, Jamie Wilson, Treaty Commissioner, Treaty Relations Commission of Manitoba, Police Chief Devon Clunis, Honourable Kevin Chief, Minister of Jobs & the Economy, and Minister responsible for relations with the City of Winnipeg, Dr. David Barnard, President and Vice-Chancellor of the University of Manitoba, Dr. Annette Trimbee, President and Vice Chancellor at the University of Winnipeg, Julie Harper, Mother of Rinelle Harper, Michael Champagne and Althea Guiboche amongst others.

“He focused on the broader truth – Winnipeg does have this issue,” Mr. Kinew told the National Post Thursday. “There’s also an opportunity here to do things the right way and maybe show some leadership on how to do right by indigenous people.”

Mr. Kinew said he quickly rearranged meetings planned for Thursday afternoon when he received a text from the mayor’s office inviting him to take part.

He and University of Manitoba president Dr. David Barnard drove there together and joined with a group of others in a boardroom before the 12:45 pm CT news conference.

“There were maybe two dozen people in a small meeting beforehand. Somebody gave me tobacco and we smudged together, said a short prayer, sang a song, just took a moment of contemplation and quiet,” he said. “Then it was ‘lights, camera, action.’

I don’t think that’s happened before at city hall.”

Mr. Kinew remembers being the target of racism as a kid at the hockey rink in Winnipeg. Most jarring of all, he said, was being targeted by the parents of fellow players.

The Maclean’s story opened by quoting a Facebook post written in December by a Winnipeg high school teacher, which said Aboriginal people are “Just standing with their hand out” and that he, as a white man, should “not be on the hook for their cultural support.”

Now, as an adult, Mr. Kinew says the racism is mostly subtle.

“I’m a professional, but people assume I’m some entry level or custodial worker. Or people will be talking to me about ‘Oh, the taxes you don’t pay,’ or ‘Everyone in your community’s got issues with alcohol or problems with government dependence.’

It’s like ‘Well there’s only one native person you’re talking to right now and that guy doesn’t depend on the government, he’s not an alcoholic or any of these things you’re trying to paint me with. So what are you really trying to say?’”

Mike Deal / Winnipeg Free Press

Mike Deal / Winnipeg Free PressGrand Chief Derek Nepinak speaks about racism in Winnipeg while Mayor Brian Bowman listens, Jan. 22, 201.

Although Mayor Bowman acknowledged that racism is a particularly difficult issue for a city hall to fight, members of the impromptu gathering acknowledged that there is hope for the city.

“I’m not here to pacify racism or to provide a politically correct statement on the reality of racism within the institutions that we function within every day,” said head of the Assembly of Manitoba Chiefs, Grand Chief Derek Nepinak.

“I guarantee that right now somebody’s having a racist experience in a restaurant, or on the streets in Winnipeg somewhere. I’m not here to pacify that or to say that it’s OK. But what I am here to do is I’m here to acknowledge the great work of people who get up every morning of every day to challenge racism in this city.”

National Post, with files from Tristin Hopper

• Email: sboesveld@nationalpost.com | Twitter: sarahboesveld

Young B.C. boys say disturbing ‘How to Kill Your Teacher’ video was meant to be a joke

CASTLEGAR, B.C. — Two boys who made an online video titled “How to Kill Your Teacher” have told police in Castlegar, B.C., that it was intended as a joke.

RCMP say they have let the 11- and 13-year-olds know that anyone who considers themselves a target of such a video may take it very differently.

Cpl. Debbie Postnikoff said Thursday that police have also spoken with the boys’ parents and school officials to try and understand why they created the video, which shows them holding toy guns and referring to a Ms. D.

Charges will not be pursued due to the boys’ ages, Postnikoff said.

She said Mounties are working with school officials, the boys and their parents to hold the children accountable for their behaviour as they put together a plan to ensure it doesn’t continue.

Greg Luterbach, superintendent of the Kootenay-Columbia School District, said officials are dealing with police and other agencies, which may include the Children’s Ministry, to conduct a violence-risk assessment.

“You’re trying to get as much data as you can to look at this to ascertain risk and then determine what kind of plan you’re going to have moving forward,” he said.

“Certainly, the video is disturbing, highly inappropriate.”

He noted it’s important for children to know the seriousness of sharing inappropriate content, even if they’re tempted by how easy it is to post to various sites.

“Three clicks later, it’s online.”

Luterbach said the district will discuss ways to educate students in making wise choices when posting anything to the Internet but families also have a role to play in discussing such issues.

“It’s about what happened and where were bad decisions made along the way?”

Police in Nanaimo were initially notified about the video after a Florida radio host saw it and called the city’s newspaper, but its origin was then traced to Castlegar, in B.C.’s West Kootenay region, where the boys were identified.

Sometimes there is no cure: Doctors, machines and technology can keep us alive, but why?

Peter Power for PostMedia News)

Before starting medical school, James Downar believed that doctors have a moral duty not to let patients die without doing everything to keep them alive. Then he started to experience how lives actually ended.

Many deaths were peaceful. Many were not. He witnessed patients dying of lung cancer who suddenly began coughing up blood, drowning before they could be injected with morphine to relieve their distress.

He observed the older man with advanced liver cancer whose wife kept insisting on aggressive care even though he clearly was dying. The man was admitted to the intensive care unit with cancer-related pneumonia, and then developed a catastrophic bleed in his stomach. His body swelled from repeated ineffective blood transfusions, his kidneys shut down and he never regained consciousness. He died without saying goodbye to his children.

“You cannot see these deaths and not be moved. They are just so unnecessary,” says Downar, a critical- and palliative-care doctor at the University Health Network in Toronto. “We had every opportunity to intervene and provide these patients with better end-of-life care, and prepare their families for what was inevitable.”

In the first of a three-part series on how we could end our lives better, Postmedia News explores the reality of death today, when technology allows hospitals to stretch a patient’s last days longer and longer — with questionable results.

“Bad deaths” happen because of an unwillingness to confront that, fundamentally, most diseases cannot be cured, Downar says. They happen because doctors, untrained and profoundly uneasy confronting our deepest fears and anxieties, see death as a failure, and it can sometimes be easier to continue with aggressive treatment than to tell a patient or family, “I can’t turn this around.”

They happen because difficult conversations aren’t happening until there is a crisis and families are in such emotionally hot states they cannot think, concentrate or hear properly.

More than 259,000 Canadians take their last breath each year. By 2036, the number will grow to more than 450,00 as the population ages.

Yet most lives do not end suddenly, meaning many people can, if they choose, plan the circumstances of their deaths, and tell their doctors and families what they want, or want to avoid.

One option may soon be legalized euthanasia. The Supreme Court of Canada is on the verge of issuing a landmark ruling into whether Canadians have the constitutional right to assisted suicide — a right Quebec is already preparing to grant terminally ill, competent adults experiencing “unbearable” suffering.

But even in jurisdictions where assisted suicide is permitted few people request it and, among those who do, many never go through with the act.

“Physicians are taught from the beginning to diagnose and treat, to diagnose and cure, to diagnose and make better, or at least control,” says Dr. Angela Genge, director of the ALS clinic at the Montreal Neurological Hospital.

“The fact that you’re dealing with death means that somehow you can’t make the patient better, you can’t control. And some people are fundamentally afraid of that.”

Advances in medicine and fund-raising slogans about “winning the war on cancer” have led to unrealistic expectations about what medicine can and cannot do. The expectation often is: you can fix this. It’s like the resurrection of Lazarus, says Derek Strachan, a spiritual care professional at the Toronto General Hospital.

“We can do amazing things, and we’ve been surprised. We’ve had people walk out of here that we would never have thought would,” Strachan says. “But it creates this expectation that we are miracle workers. And when we can’t perform miracles, it’s tough.”

Pat and Ken Hillcoff had discussed what they would or would not want if faced with a terminal illness. Ken’s father died of ALS. Pat’s mother died of a heart attack when she was 65. They had conversations about never wanting to be kept alive on machines, never wanting to be dependent on others.

“In a black and white world, it’s easy to say you don’t want those things,” Ken said. “But in Pat’s case, nothing was black and white. It was all grey.”

Pat was 57 when she was diagnosed with pulmonary fibrosis — deep scarring in her lungs. The retired primary school teacher was told her she would die without a double lung transplant.

She was sent home on oxygen and waited 14 months for her new lungs. The operation took eight hours. She would spend the next 180 days in intensive care fighting not to die. Her body battled furiously against the new organs. She developed infections and her chest wound had to be kept open for four months to treat the area and debride the bones. Ken saw his wife’s heart beating inside her chest. One day, when the surgeon moved the organs to get to where he needed, he told Ken, “Now two men have touched Pat’s heart.”

Miraculously, Pat rallied. But her kidneys had shut down and so four afternoons a week Ken connected Pat to a dialysis machine, hooking the dialysis tube to the thick, central line that went into Pat’s heart and exited up near her left breast.

In all, she would spend 300 days in intensive care. Ken was there for 299 of them. “Each morning, the doctors would start their rounds, with, ‘Today is day number ‘fill in the blank.’ This is Pat.”

Pat was eventually discharged home. She lived another 24 good and meaningful months on dialysis. Then, in early spring 2014, she was diagnosed with breast cancer. The doctors told her she would not survive surgery, but they offered radiation. She developed an overwhelming infection and spent her last six weeks of life in hospital, confined to bed. On the evening of April 14, Ken kissed Pat goodbye as the nurses connected her to the dialysis machine. “Love you, see you in the morning,” he told her.

Pat died the next morning, before Ken could get back to the hospital. She was scheduled for more radiation that day.

Ken believes Pat’s doctors did everything they could. “She was stubborn — she would call it tough. In the ICU, I never had the idea ‘you shouldn’t really be doing this,’ because you’re hopeful.”

The end wasn’t what Pat had hoped for. “Any death in the hospital is going to be bad, and she suffered a little at the end,” Ken said. He can’t remember being approached to discuss Pat’s wishes, until death was near. “There were so many doctors involved. I could see that it would be easy for someone to think, well, someone else must have discussed this with the family. So nobody ended up talking about it.”

Most of us want to die at home, surrounded by families. The reality is 70 per cent of us will die in a hospital and of those who do, 10 to 15 per cent will be admitted to an ICU. Most Canadians have no written plans about what life-prolonging treatments they would accept or reject, and fewer than half have designated a substitute decision maker to speak on their behalf if they became incapacitated.

Doctors say some families are clear: “My mother would never have wanted this.”

“But some families are absolutely adamant that life-sustaining interventions not be withheld or discontinued,” says Dr. Christopher (Chip) Doig, professor and head of the department of critical care medicine at the University of Calgary.

Many have not fully grasped what they are asking for.

Peter Power for PostMedia News)Denise Morris, right, is the nurse manager for the medical/surgical intensive care unit, and Derek Strachan, left, is a spiritual care professional in the medi/surgical ICU at Toronto General Hospital.

“When I do CPR on somebody I can assure you that I will break their sternum and their ribs,” says Doig, who can often feel the bones cracking beneath his hands during deep chest compressions.

Most patients on ventilators need to be sedated so they don’t try to pull the breathing tube out. The tube burns; it can feel as if someone is pushing a gloved finger down his or her throat. They cannot talk. They cannot eat by mouth. And they need to be suctioned, which involves taking them off the ventilator. They can feel as if they are suffocating. Some patients require suctioning 40 to 60 times a day.

Patients have tubes in almost every orifice — a bladder catheter, a rectal tube, a feeding tube, arterial lines in their groins or wrist, central lines under their collarbone into the main blood vessels close to the heart.

When the interventions seem futile, when none of it is likely to change the “outcome,” the distress on staff can be profound.

ICU nurses provide one-on-one care. They talk not just about their patients, but “my families.” Nurses say there can be few things more distressing than when an unconscious patient grimaces, or reaches out for them, when they are being turned.

They are often the first team members to feel that life-support should be withdrawn.

“Sometimes the nurses are already at the place, thinking, ‘we need to have a family meeting, we need to have some end-of-life discussions here,’ but it may not be on the family’s radar,” said Denise Morris, nurse manager of the medical/surgical ICU at Toronto General Hospital.

“And I think that piece, that waiting for the families to decide, is difficult, because the question in their head is, are we actually doing harm for our patient? Are we prolonging the dying process, rather than prolonging life?”

Without prior conversations or advanced directives, when families have to decide about withdrawing or stopping treatment the choice can be agonizing.

Peter Power for PostMedia News

Peter Power for PostMedia NewsKen Hillcoff is photographed inside his Markham home where he lived with his wife Pat before she passed away on April 15, 2014.

“Families tell us that kind of decision-making is really distressing to them. ‘Don’t ask me to make that decision to take my dad off the vent. I can’t do it,’ ” Morris said.

Experts say that too often the communication focuses on what will not be done — “we should remove the life-support” — which often only provokes the response, “you can’t stop.” Instead, Downar says the emphasis should be on switching from “curative” or life-prolonging care, when there is no hope for recovery, to “comfort” care.

Ottawa oncologist Dr. Shail Verma says when patients trust that everything that can be tried has been tried, the response is often, “I’m exhausted. I would rather focus on the quality of my life and the end of my life.”

But when something has always worked, when a patient with widespread cancer has been saved again and again, “when finally something else happens and you say, ‘the barrel is empty, there’s nothing more to give,’ there can be this disbelief,” Verma said.

“I think the climate today is, ‘there must be something.’ And so inadvertently patients who have incurable catastrophic presentations of cancer still end up on ventilators, they still end up in ICU settings for weeks, until someone has the courage to say, ‘this will never get better.’

Many experts are pushing for more training for doctors on how to handle with skill and delicacy end-of-life discussions with patients.

It’s a conversation doctors dread the most, says Dr. Heather Ross, a cardiologist at the Peter Munk Cardiac Centre and one of the top transplant specialists in the country. “I think it’s just an incredibly difficult thing to do. Trying to find a way to tell somebody that they’re dying but not remove hope so that there is something for them to hold on to is a very big challenge.”

family handout

family handout Pat Hillcoff, a Toronto-area woman who died last April at age 62 after a double lung transplant.

Ross focuses on her body posture and eye contact. If the patient is in bed, she sits. If he’s bolt upright, she stands. Her hands are never in her pockets; her arms are never folded across her chest. She gauges how the patient is taking in the information. Do they accept? Keep going. They don’t accept? Pull back.

“Often I have a very long and established relationship with these patients. I will look them in the eye and tell them that, unfortunately, there isn’t any other treatment I can offer, and that we’re in trouble. Real trouble,” Ross says.

“Oftentimes patients are already there, and we’re the ones struggling to catch up.”

Ross says everyone deserves the right to a dignified death — to be comfortable, to bring closure if needed to issues with family or friends, where caregivers and families aren’t abandoned and people ultimately do not suffer.

Polls supporting euthanasia suggest many of us fear our last moments on earth. Quality, end-of-life care could give more Canadians a gentle exit from this world, Harvey Max Chochinov, a professor of psychiatry at the University of Manitoba, writes in a recent commentary in the journal, HealthcarePapers. But today in Canada, the chance of getting such care often comes down to a “crapshoot,” Chochinov says. “Is it any wonder that people are so afraid?”

Tomorrow: Living while dying: How to improve the quality of life until the last breath.

Defrocked child abusing priest tells judge he’s sorry and won’t commit any more crimes

IQALUIT, Nunavut — A defrocked priest who abused a large number of Inuit children has told a judge that he’s sorry for his crimes and won’t commit any more.

At those words from Eric Dejaeger, an Iqaluit courtroom packed with his victims swelled with cries and weeping.

Dejaeger, convicted on 32 counts of child sexual abuse, took the witness stand before Justice Robert Kilpatrick considers the length of his prison sentence.

The Crown has asked for 25 years, which would be reduced to 17 years once credit for time already served is subtracted.

Dejaeger’s lawyer says 12 years — of which no more than four would be spent behind bars — would be more in keeping with previous judgments.

The defence says Dejaeger, who is 67, is being treated for cancer, has heart problems and fears dying in prison.

The prosecution says the former Oblate priest permanently blighted the lives of his victims with his crimes, which occurred in the Nunavut community of Igloolik about 35 years ago.

DECLASSIFIED: Memo to PM on Ottawa Attack

This “Secret” Memo — almost completely redacted — is the only document the Privy Council Office released in response to an Access to Information request filed by the National Post for copies of all briefings Prime Minister Harper received in the aftermath of the Oct. 20 and 22 attacks in Saint-Jean-sur-Richelieu and Ottawa. The blocks of information were withheld on grounds of security, international affairs and defence, and solicitor client privilege. An additional four pages were completely withheld because they were deemed “personal information.”