Most Canadians have no end-of-life plan
Rather than ever lose his ability to think, remember or recognize his wife and children, Dr. Daren Heyland would sooner be dead.
The critical care doctor and professor of medicine at Queen’s University also states in his personal directive — a legal document that set outs the treatments he would and would not want should he ever lose the capacity to speak for himself — that he would rather die than be left dependent on others to feed, dress, bathe or otherwise provide total care for him.
Too many times Heyland has stood at the foot of a patient’s bed in the intensive care unit and thought to himself: I never want to die this way.
Death is inescapable, the “singular inevitability” for all of us. Yet the majority of Canadians — 80 per cent — do not have a written plan about what life-prolonging treatments they would accept or reject at the end of life, and fewer than half have discussed the issue with their families, according to a recent Ipsos-Reid national poll.
Only 46 per cent have designated a substitute decision-maker, someone to speak on their behalf if they became incapacitated.
Would the patient want to be connected to an artificial ventilator, unable to swallow, talk or breathe for themselves? Would they want to be tube-fed or resuscitated if their heart stops, or completely sedated and turned and fed, with no perception of anything around them?
Without any guide posts set by the patient, the system takes over. The fallback, doctors say, is to keep going — to provide increasingly intensive and invasive care that ultimately prolongs dying, leading to a poorer quality of life, unnecessary pain and suffering and increased rates of depression, anxiety and even post-traumatic stress disorder for the surviving family.
“So three to six months later, they’re still reflecting, ‘What was that all about? Why did mom have to undergo all that aggressive care at the end of life, and for what purpose?’” says Heyland.
“We’re harming people at the end of life when we should be celebrating their lives and providing them with dignified comfort measures.”
In a recent study, Heyland and colleagues interviewed elderly hospital patients considered to be near death and asked what kinds of life-sustaining treatments they would or would not want. Then they looked at the resuscitation or “code status” recorded on their charts. The patient’s preferences agreed with the order on the chart in only about a third of cases.
And most of the disagreements related to patients wanting simply to be made comfortable in the face of death, but their chart documented “full code” — meaning CPR and every other possible measure would be used to try to save their lives.
In other cases, people are agreeing to life-prolonging interventions without fully grasping what is it they are signing on for, doctors say.
For example, CPR, cardiopulmonary resuscitation, performed in a real world intensive care unit isn’t like the sanitized and “miracle recovery” versions depicted on TV. CPR can be almost violent and sometimes lead to broken ribs, punctured lungs and a high rate of stroke and serious brain injuries. The survival odds are slim.
“The chance of being resuscitated when you’re terminally ill with cancer is like one in 100,000,” says Dr. Larry Librach, director of the Joint Centre for Bioethics at the University of Toronto. The chance of making it out of hospital, he said, “is zero.”
Yet the “default” in 2012 is that, whatever the diagnosis, “there is always the hope, the expectation, the offer that we can do something more to try to beat this, to treat this,” says Dr. Robert Fowler, associate professor in the departments of medicine and critical care medicine at the University of Toronto and a critical care doctor at Sunnybrook Health Sciences Centre.
“We’re going to have to come to terms with the notion that death is inevitable,” he said. “Clearly, for all of us, there is ultimately going to be something that can’t be cured.”
In 2009 in Canada, 238,418 people died, according to Statistics Canada. Nearly 158,000 of them died in hospital.
By 2030, the number of deaths in Canada will grow to more than 330,000 per year. The population is not only aging, but also facing a huge growth in chronic diseases, making discussions around end-of-life care even more urgent, observers say.
Diabetes, cardiovascular disease and some cancers are on the rise. Half a million seniors currently suffer from dementia, a number that is expected to rise to more than a million by 2038.
More people are dying in technology-laden intensive care units, where machines can keep failing lungs, kidneys and other organs alive and functioning in even the sickest of patients. It’s a place of heart monitor leads, chest tubes, breathing tubes, catheters to drain the bladder and central lines inserted deep into the large blood vessels of the chest, neck, or groin. Patients are often sedated; their hands are sometimes tied down.
Every competent adult has the right to refuse any treatment.
“But so often now you lose your capacity at the end,” says Sharon Baxter, executive director of the Canadian Hospice Palliative Care Association, which is working with other organizations to encourage Canadians to speak with family and friends about their wishes for end-of-life care.
The best time for those discussions is before a crisis, yet we haven’t “normalized” death, Heyland said. We don’t talk about it freely or openly.
Alberta Health Services and Fraser Health Authority in B.C. are among the leaders in Canada in advance care planning. But Fowler says that doctors, nurses and other health care professionals generally find the topic “naturally a bit of a downer, because we’ve bought into the idea modern medicine can beat everything.” Death in the “healing profession” is seen as the ultimate defeat.
“From the physician’s point of view, if you’re advocating a treatment plan and then start talking about death and dying, a lot of physicians have felt in the past that they may actually be depressing the patient, or influencing them, or making them upset needlessly — because it’s not a topic that can be discussed when people are unwell without a considerable amount of emotion,” said Canadian Medical Association president Dr. John Haggie.
“That’s one of the reasons why, as a profession, we are suggesting that people have these discussions when they’re actually well.”
What Heyland, of Queen’s, most frequently hears from patients is, “When there’s no hope, I do not want heroic measures.”
But even that’s problematic. What constitutes a “heroic” measure? Would that include artificial hydration? Antibiotics?
“Okay, well, there’s generally never ‘no hope’, and what does that really mean?” says Heyland, who works with the Canadian Researchers at the End of Life Network (CARENET).
Too frequently, advance directives don’t reach the people who ultimately will have to execute them. The recent poll showed that only nine per cent had discussed their wishes with their doctor.
People also change their minds. B.C. palliative care expert Dr. Romayne Gallagher remembers one patient who had a stroke but recovered with some mild disability. He told his family that if he ever had another stroke they were not to do anything to keep him alive.
He had a second stroke a few years later. He was unable to speak and had trouble swallowing. The medical team suggested a feeding tube. “The family said, ‘Absolutely not, because he told us that this (allowing him to die) was what he wanted,’” Gallagher recalls.
The man couldn’t talk, but he could write, so Gallagher went to him and asked: “This is what we’re thinking of. You’re not eating and your family says you don’t want anything to prolong your life. What are you thinking?”
“Different now,” he wrote.
“When people are well they tend to choose death over disability,” Gallagher says. “But when people get sicker they adapt to disability and they still find quality in life, and they have trouble then saying, ‘No, I’m not prepared to die.’ That’s why a single piece of paper is not the message we want to give to people.”
A recent Royal Society of Canada expert panel on end-of-life care says that all levels of government should educate the public on advance care planning and cover discussions about end-of-life planning under provincial health insurance plans. Heyland said hospitals need more staff skilled in helping patients through those conversations, and that they need to be frank and honest about what life-prolonging treatments involve so that patients can make fully informed choices.
His group, for example, is developing a video that walks patients through what it’s like to be resuscitated.
CPR involves hard and fast compressions on the breastbone to keep blood circulating, powerful intravenous medications to stimulate the heart, electric shocks and a breathing tube inserted down the throat and into the lungs — “all very aggressive and invasive procedures that have the potential, in some cases, to get the heart going again and resume life,” Heyland says.
“But in other cases we’re just prolonging the dying experience.”
Some patients accept the risk. For them, nothing is worse than death itself, he says.
“But in the context of a six-minute video we’re trying to bring people to the point where they can fully see what they’re signing up for if they say, ‘I want to be resuscitated.’”