Why Quality of Life Matters, Even in Your Final Hours With right-to-die legislation offering a new way out of pain, what’s the role of palliative care today?

Categories: Community Engagement and Opinion.
To hear Balfour Mount tell it, death has been part of his life from the beginning. “The day I was born, I stopped breathing,” he says. Mount’s father, a doctor, was on his regular medical rounds and dropped by the incubator of his newborn son. “He picked me up, and I was blue and I wasn’t breathing at all, and he slapped me on the back.”

When Mount was about seven or eight years old, his father brought him along on a house call to a “Miss Stacey,” who was also a family friend. At first, he waited outside the woman’s bedroom while his father went inside, but then his father beckoned him in. “That was the first bedside of a dying person I was privileged to be at,” he recalls. “And it was calm and positive, and she was able to greet me with warmth.” But, as Mount was to learn in the course of his own medical career, relatively few Canadians die in comfort at home, even if that is what most of them would wish.

Mount is often regarded as the founder of palliative care in Canada and has arguably been the leading proponent for the field worldwide. He coined the term, developed the theory and practice at the Royal Victoria Hospital in Montreal, and became a relentless evangelist for the concept. In early October, Montreal hosted the International Congress on Palliative Care, just as it has every second year since 1976, when Mount organized the first one. The congress, which last fall attracted around 1,800 doctors, nurses, chaplains, researchers, and other health professionals, has forged a global movement. Now seventy-nine and retired, Mount lives in an elegant wood-panelled house just a few blocks west of the Royal Victoria Hospital, where he practised medicine for all of his professional life.

He has himself suffered bouts of testicular, bladder, and esophageal cancer. In 2007, he had a tracheostomy, and now he has a little flap in his throat that opens and closes as he speaks. He says he has survived the esophageal cancer much longer than is usual. But none of his own health concerns suppress his interest when it comes to the subject of death and dying, though he believes they have given him deeper empathy for the ill. At times folding one leg underneath him in a sort of half-cross-legged pose, he bounces in his armchair as he recounts the origin story of palliative care. Mount concedes that others might imagine the field to be depressing to work in, but he does not. “Clearly there are those who find that working in this context is a source of profound meaning.”

Surprisingly enough, death was largely neglected in the first half of the twentieth century, when the scientific model of medicine was in the process of vanquishing infectious diseases, containing scourges such as diabetes, and finding treatments for cancer and heart disease. Mortality and morbidity from disease plummeted and life expectancy shot up. Through that lens, death, though inevitable, seemed like a medical failure, and it was pushed to the fringes of the discipline. Once a doctor decided that there was “nothing more we can do” about a disease, too often it meant that nothing more would be done for the patient. Sometimes, this meant isolation and agony at the end.

In the United Kingdom in the 1960s, Cicely Saunders—by turns a nurse, a social worker, and a physician, spurred by an intense Christian faith—created Saint Christopher’s Hospice, a stand-alone institution specifically for the dying. Most of its patients had cancer, but instead of attempting to cure disease, doctors focused on treating symptoms. For some years, the hospice often employed the “Brompton Cocktail,” typically made from morphine, cocaine, alcohol, syrup, and chloroform to check nausea and pain in patients dying from cancer, later using low-dose morphine for the same purpose. Saunders’s concept of treating “total pain” meant attending as much to the psychic pain and spiritual needs of patients and their families as it did to the patients’ physical comfort.

Saint Christopher’s Hospice created a new model for treating the dying. Its work was echoed in the writings of Swiss American psychiatrist Elisabeth Kübler-Ross, famous for formulating the “five stages of grief” among those with a terminal illness—denial, anger, bargaining, depression, and acceptance. (The Kübler-Ross model for the five stages of grief is now widely discounted in the field, though it’s still commonly cited in popular culture.)

The work of the two women inspired Mount. His innovation was to say that medical services to the dying need not be provided exclusively in a hospice. They could be delivered within the walls of a general hospital and extended from there into the home, an idea that Saunders, according to Mount, initially opposed on the grounds that the prevailing hospital culture was too fixed on curing patients to start caring about how they died.

Few people outside the field realize that hospital-based palliative care is a Canadian innovation and that it was invented independently in two separate institutions. In November 1974, Saint Boniface Hospital in Winnipeg launched a unit for “terminal care,” which was founded by David Skelton and led by Paul Henteleff. A few weeks later, Mount left a promising career as a urologist to launch the “palliative” service at the Royal Victoria Hospital in Montreal. Both physicians worked independently in two different hospitals with no knowledge of what was happening at the other.

Put simply, the idea behind both programs was to focus not on curing terminal illness but on improving the quality of life of patients, whether they died at home or in an institution such as a hospital or hospice. The emphasis was on the relief of suffering: physical, of course, but also psychological, social, and spiritual. Palliative care not only reduces the suffering of the dying and their loved ones but, the research suggests, it could also save money by reducing visits to the emergency department and other costly interventions at the end of life.

Nonetheless, the field has faced resistance in hospitals and medical schools, where it competes for scarce resources. It was only officially recognized as a medical subspecialty in Canada in 2013. Provincial health ministers have been quick to embrace the concept in theory, but not as quick to fund the programs to make it generally available. Though most Canadians say they would prefer to die at home, the Canadian Institute for Health Information recently reported that fewer than 15 percent received publicly funded palliative care in their home in Ontario and Alberta, the two provinces where statistics are available. In western Canada, among people hospitalized in their last year of life, only about a quarter received some form of palliative care; in Ontario, even among those who do receive palliative care, nearly half receive it only in their last month of life. Yet, as Canada’s population rapidly ages, the need for palliative care will grow: the number of deaths annually in Canada is expected to double in coming decades.

Meanwhile, the field of palliative care has been riven from within as more and more places, including Canada, allow physicians to hasten death when patients choose this option. For some, ending life is the logical extension of palliative care’s compassion for the dying and concern for their suffering. For others, it is an attack on the very moral foundation of the field and its respect for life until the last breath. Whichever side practitioners take in this agonizing debate, they agree that no one should be forced to choose an early death just because they couldn’t access the palliative care they needed to bring them in relative comfort to a natural end.

In his effort to convince the Royal Victoria to give him the beds and resources to launch a palliative unit in the early 1970s, Mount conducted a research project in which terminally ill patients were interviewed, revealing a wrenching disconnect between them and their doctors. A survey found that 78 percent of patients said they should always be told the nature of their disease, but only 13 percent of physicians agreed. One story in his report involved a woman, called Mrs. P., who found out that she had been ill with a rare form of cancer for several years only by persuading an intern to come clean with her. Even then, her oncologist did not acknowledge directly that her case was terminal.

On a follow-up visit [Mrs. P.] was accompanied by her husband, who requested a private interview with the doctor. After a wait of an hour, the doctor confronted him.

‘There is nothing we can do medically. We can only keep her comfortable. I’m sorry, but this is it. Is there anything else you would like to know?’

The meeting lasted less than two minutes. With his voice cracking, the husband left the room. Upon meeting the student interviewer, he stared blankly; ‘You doctors really don’t understand.’

The doctor’s entry in Mrs. P.’s clinic chart stated, in effect, that the situation had been explained in detail to the patient’s husband and all supportive measures had been taken.

Mount’s survey concluded that terminal patients at the Royal Victoria were experiencing poor pain control and neglect of emotional distress. Medical staff, he found, were generally unaware of the issues that their patients confronted. In Mount’s view, twentieth century Western medicine had become completely focused on “investigating, diagnosing, prolonging life and curing”—all of which were less relevant to the needs of the dying than a focus on quality of life.

He coined the term palliative care to get away from the aura of abandonment around the word terminal. Francophone colleagues at the Royal Victoria, which is part of McGill University’s medical complex, had told him that the term les hospices had a connotation in French of a dumping ground with inadequate care. Derived from a Latin word for a cloak, in medical parlance palliative had come to mean improving quality of life—cloaking symptoms, in effect. Mount decided to apply the term to caring for the dying. Today, it is the word used for end-of-life care worldwide.

A seminal moment for Paul Henteleff, who went on to lead Saint Boniface’s palliative program, came early in his career, when he was in general practice. A patient called out from his hospital room to Henteleff, who was walking past. Henteleff told him he would be right back; he wanted to check on the patient’s X-ray first. “I got back to the room, and he was dead,” Henteleff says. “Here I am putting the X-ray as more important than answering his call.”

Henteleff, now also retired and living in a flat within sight of the Golden Boy in Winnipeg, independently identified the same problem as Saunders and Mount had done: medical staff often had little understanding of what was happening in the lives and minds of their dying patients. In the terminal unit of Saint Boniface, Henteleff developed a method he called “probing,” designed to put primacy on the patient’s experience. “I tried to find out from the patient how they understood their illness,” he said. He would ask them how serious they thought their illness was, whether they thought they were getting better or worse, and whether they had ever wondered whether they would die of their illness.

“That gave the person a chance to stop me from probing even deeper,” he says, since some patients had a limit to what they were willing to hear. “That gave me a sense of how I could interact with them without brutalizing them.” When he told patients about diagnosis, treatment, or prognosis, he looked for feedback. “Tell me what you understood from what I said,” he would say. The responses, he says, could be shocking, reflecting the disparity between what patients understood about their illness and how much they chose to share with their doctors.

To some degree, the culture of palliative care comes as a rebuke to the mainstream of modern health care, which is often driven by medical tests and medical interventions. It is also in tension with the current trend to “evidence-based medicine,” which, far from treating each patient as an individual, derives its power from using statistical data to predict the course of an illness and the likelihood a specific treatment will work. Illnesses rather than patients may become the object of care. A number of studies have shown that medical students actually tend to lose empathy for patients over the course of their education. In some medical programs, there is now more demand for rotations in palliative care than there is capacity to accommodate them. One senior palliative physician said this is not because students are clamouring to become specialists in the field. Rather it is because many of them are seeking out an experience where they can reconnect with the human values that drew them to medicine in the first place.

In the forty-two years since Mount launched the first International Congress on Palliative Care, the practice has spread remarkably, which was reflected in last fall’s program. There were sessions on how to deliver palliative care to Indigenous communities, in the developing world, and to dying children. A field that was once dominated by caring for those sick with cancer has moved to include people with other deadly chronic illnesses, such as Alzheimer’s, kidney, and cardiac disease.

But like any large social movement, palliative care has ideological tensions. The field was launched in significant part by deeply religious people, most of them Christians. Mount has written about his religious inspiration, even suggesting that divine provenance showed its hand at times when he was recruiting staff to his new unit in the 1970s.

Not surprisingly, the field has been divided by the advent of legalized euthanasia and medically assisted suicide. In Canada, the term of art is “medical assistance in dying” or maid—a term that Mount treats with contempt. All palliative care, he says, is medical assistance in dying. He regards any attempt to help end the life of a patient rather than sustain comfort and quality of life to the end as contrary to the medical mission. “I feel absolutely strongly that that is a colossal error because once you define the place of appropriateness for killing people, then it will expand.” Mount insists his views are rooted in medical culture going back to Hippocrates and are not grounded in his religious faith. But it is clear that divisions in the field fall partly along religious lines.

When the subject of physicians helping patients to die comes up in palliative-care circles, as it did repeatedly at the conference in Montreal, you can see jaws tightening and blood flowing to the cheeks. While many long-term practitioners of palliative care oppose ending life, often on moral and religious grounds, there is a minority that has incorporated it into their practice and feels just as morally committed to its view. Some people in the field are worried that maid could be used as a cheaper alternative to good palliative care. Some say there are physicians who, for various reasons, have fled the field altogether.

A number of institutions have tried to find a way to accommodate both views. One study presented at the conference described a palliative-care centre in Toronto where six physicians provide medical assistance to end the lives of patients who request it and five others are “conscientious objectors” who refuse to do so. Ten more are willing to provide the second assessment required before a physician can help a patient die but will not participate in the death. “We sometimes describe ourselves as a big happy dysfunctional family,” said Joshua Wales, one of the physicians at the centre and the author of the study.

Henteleff, a nonpractising Jew raised in a secular family who is now married to an Anglican priest, was once a vocal opponent of legalizing maid on the grounds that the pallaitive system was not yet developed enough to responsibly integrate the practice. As president of the Canadian Palliative Care Association, he wrote on the subject and testified before a Senate committee. Time, he says, has softened his stance. When he conducted a study of his own patients, he was surprised to discover that, despite all the efforts to avoid it, 5 to 10 percent died in pain. He says it opened his eyes to his own delusion about what good palliative care could accomplish.

“One piece of me says, well, if you want a suicide, you can manage to do it without any help at all. But usually it is pretty ugly and brutal means. And any of the easy ways, with drugs, are all in the hands of physicians.”

Paradoxically, the advent of legalized medical assistance to die in this country also created renewed political interest in palliative care. At the time of legalization, opponents of maid were worried that it would become the option of choice for those dying in pain if they did not have access to adequate palliative care. Even the advocates of maid were not inclined to dispute this. In 2017, in the wake of maid legislation, Parliament unanimously passed a private member’s bill proposed by an Opposition MP—an extreme rarity—requiring the government to come up with a national plan for palliative care. Since then, the federal government has led a consultation process that has included the provinces, practitioners, and the public. In December, Health Canada released a framework outlining the steps needed to ensure that all Canadians with terminal illnesses receive quality end-of-life care.

But the federal government has not attached any additional dollars to palliative care in the context of the new framework. The provinces and territories, which actually run our health systems, are all committed to improving palliative care but are unlikely to be moved to redouble their efforts by frameworks or fine words. maid was administratively easy to adopt and cheap to implement. Providing a full program of palliative care that would allow most Canadians an option to die naturally in dignity and peace might save the system money in the long run but would be costly to implement up front. There would need to be more specialist practitioners, more training of generalists, more hospital beds, more and better home care, and better integration of badly fragmented existing services.

Our health care systems are already reeling with the challenges of coping with a longer-lived and aging population increasingly afflicted with chronic disease. Politically, there is pressure to devote more resources to cancer care and heart disease. In a culture still uneasy with any discussion of death, it is hard to mount a comparable campaign to address a subject we are all trying desperately to avoid. Yet death is the one condition 100 percent of us will eventually face. The decisions governments make now about funding and support for palliative care will determine the comfort and circumstances of our dying loved ones—and how we ourselves will likely die.

Paul Adams writes regularly for iPolitics and teaches journalism at Carleton University.