Peter Power

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.”

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.