Even in this age of mir ulous drugs, Canadians suffer without adequate treatment

Mark Nichols August 16 1999


Even in this age of mir ulous drugs, Canadians suffer without adequate treatment

Mark Nichols August 16 1999



Even in this age of mir ulous drugs, Canadians suffer without adequate treatment

Mark Nichols

For Alice Chen, summer is a cruel season. The warm, sunny days only add a bitter poignancy to her suffering, reminding her of favourite outdoor activities. “Rowing boats, cycling, swimming, camping—its all been taken from me,” says the 53-year-old former waitress, “and it’s devastating.” Instead she spends most of her time in the room she rents in the home of a Montreal family. Because she considers her health a private matter, Chen prefers not to be identified by her real name. She has cancer in one breast, her lungs, her liver and her bones, as well as tumours at the base of her neck and in her shoulders. Much of her cancer is in remission, Chen says, but not the neck tumour, which can cause “excruciating” pain, despite chemotherapy aimed at shrinking the growth and a regimen of powerful drugs. “If I wasn’t so afraid of death,” she says, “I’d have taken my life a long time ago. At times, I think I just can’t take the pain any more.”

Even in the age of miraculous painkillers, it is an alltoo-common state among patients with agonizing disabilities. Firm statistics are scarce, but more than four million Canadians probably experience severe and prolonged pain at some point in their lives—and often without relief. Experts estimate that as many as 70 per cent of Canadians who suffer pain do so without adequate treatment, including the thousands of children who are victims of a lingering myth that the young do not suffer the way adults do (page 59).

For cancer patients who are offered powerful medication, it can sometimes be a hard choice—between horrific pain and the comatose state that massive drug doses can induce. “At times,” says Dr. Anna Towers, director of palliative care for the McGill University Health Centre in Montreal, “we have to tell patients, ‘We can treat your pain, but you will not be conscious.’ ” Often, even that relief is not provided. Despite strides in understanding and treating pain, says Dr. Larry Librach, head of palliative care at Toronto’s Mount Sinai Hospital, some terminal cancer patients in Canada are suffering excruciating pain because expert help is not there when they need it. “It is still possible for people to die in agony in a Canadian hospital,” he says, “when they don’t have to.”

A big part of the problem is that many physicians have little training in pain control because, until recently, most medical schools did not provide it. And many doctors are reluctant to administer painkilling narcotics. “Some doctors don’t like prescribing these drugs because they fear addiction,” says Dr. Paul Daen-

inck, a Winnipeg palliative care expert, “even for patients who may only have a few weeks to live.”

And though powerful new drugs are likely to emerge during the coming decade, there are times now when skilled experts can use the best painkillers available, and still fail to vanquish pain. “There was horrendous pain from start to finish,” says Marcia Rioux, a Toronto human rights consultant who watched a friend die of ovarian cancer in March. “It never stopped getting worse. I know the doctors did the best they could, but nobody should have had to die like that.”

Scientists have yet to fully grasp the intricate interplay of nerves and interconnections in the brain that produce the experience called pain (page 54). Some pain has a clearly protective function—warning the unwary not to touch a hot stove element again, and making wounds sensitive to touch so they will be kept free from harm as they heal. But often the worst kinds of pain seem pointless—and hideously cmel. Doctors divide pain into two broad categories. One is chronic pain— any condition that persists for more than six months. This is the misery that afflicts the victims of non-lethal maladies ranging from lower back pain to migraine headaches and shingles (page 56).

Then there is the pain experienced in the advanced stages of diseases like cancer. This is the theatre of operations for a relatively new kind of medical expert—the palliative care specialist whose mission is not to cure disease but to bring comfort to those for whom hope has run out. Their patients include people dying of AIDS, heart disease, degenerative conditions such as Lou Gehrig’s disease—and cancer.

Tumours can inflict misery by pressing on organs, by destroying tissue and by attacking the nervous system itself. Neuropathic pain—the gnawing misery inflicted by nerve damage—can be ferocious and extremely hard to control. The reason: prolonged pain can cause changes in the wiring of the central nervous system, shutting down circuits that might otherwise moderate the pain and activating others that can prolong it.

The prime pharmaceutical defence is with powerful opium-derived drugs (morphine, codeine) and the synthetic, morphine-like painkillers known as opioids (Dilaudid, Percocet, methadone). Physicians who treat pain can sometimes thwart it by anesthetizing nerves or by injecting drugs around the spinal cord. And they can try radiation or chemotherapy in the hope of dulling

pain by slowing or halting cancers development. With all of these weapons, says Towers, “we can effectively control between 90 and 95 per cent of pain cases.”

It is the remaining five to 10 per cent that occupies many scientists as they test new avenues of attack and seek a better understanding of the mechanisms underlying pain. In May, researchers in Toronto reported a breakthrough that identified for the first time specific human nerve cells that respond to pain-causing stimuli. Neuroscientist Bill Hutchison says his team now is mapping the area in the brain where the cells were found—a region known as the cingulate gyrus that is believed to play a role in ordering the reflex limb-withdrawal movements that pain produces.

In Montreal, Frances Abbott, a physiological psychologist at McGill University, is trying to find ways of intervening in the mystery of why pain sometimes persists by studying the flood of chemicals the body deploys to cope with injury or inflammation. Some of the chemicals appear to play a role in sending pain signals to the brain—and Abbott thinks one may be responsible for making pain last. Meanwhile, scientists at major pharmaceutical companies are trying to develop pain drugs that do not have the side-effects of narcotics.

One such drug that is already undergoing preliminary testing, says Andy Drea, a senior researcher at Montreal-based AstraZeneca, is a new kind of

opioid that tackles some types of physical pain without affecting the brain. But, cautions Drea, “we’ve stopped hoping for a magic bullet—a pill that will stop all pain. The pain process is too varied, too complex.”

Dick Mulder recalls all too well the months of pain that his wife endured. Velma Mulder died of cancer in Winnipeg on June 21 at the age of 75. After undergoing surgery for pancreatic cancer seven years ago, Velma was diagnosed with the disease for a second time in November—and this time doctors said it was inoperable. “The pain,” says Mulder, 76, who runs

The latest theory: it is in your head

Pain is a puzzle that experts still cannot fully piece together. Until about 50 years ago, scientists envisaged a simple system in which injury or disease triggered impulses that shot through the nervous system to a “pain centre” in the brain. The reality is far more complicated. The updated view has been strongly influenced by Ronald Melzack, a McGill University psychology professor, and Patrick Wall, a British physiologist.

In 1965, they published their influential “gate-control” theory of pain.

It says that potentially painful physical events produce complex signal patterns. As the patterns move along the spinal cord, the nervous system interprets them and may reject or modify them on their way to the brain. And instead of a single pain centre, many parts of the brain are probably involved in processing pain signals. As a result, the intensity of pain may be influenced by past experience and cultural beliefs—even by what someone thinks the pain means (Is this indigestion, or am I about to have a heart attack?).

Melzack has another theory, which proposes the existence of a “neuromatrix” in the brain. Influenced both by inheritance and sensory input, the matrix actually generates the feelings—including pain—that seem to come from the body. That is not to suggest the suffering is imaginary. “If people complain of pain,” says Melzack, “we have to assume the pain is real. In a lifetime of research, I can count on the fingers of one hand the number of people I’ve met who faked it for one reason or another.”

Mark Nichols

A deep-seated obstacle to effective pain control is the reluctance of many doctors to prescribe addictive narcotics

a Winnipeg construction firm, “was pretty well constant.” Palliative care physicians administered “all kind of drugs,” says Mulder. “If you could get her in a comfortable position the pain seemed to be minimized. But the least little movement caused terrible pain. At one point, the pain was so bad, she said to me, ‘I wish I could die today.’ But she lived another five days.” Despite her anguish, Mulder thinks the doctors did an excellent job. “Without the care she got,” he says, “it would have been a lot worse.”

For many Canadians who die of cancer and other painful diseases, it is worse, simply because palliative care services are not uniformly available across the country. That is partly because it is such a new concept, a reality only since 1967, when a British physician, Dr. Cicely Saunders, opened St. Christopher’s Hospice in London with the goal of alleviating pain rather than fighting disease. Saunders’ ideas spread internationally—the first Canadian palliative care centres opened in 1974 at Montreal’s Royal Victoria Hospital and at Winnipeg’s St. Boniface Hospital.

Today, most Canadian hospitals have palliative care units that treat the toughest cases, advise other hospital physicians on pain control and—if the staff is large enough—help provide care in patients’ homes, where most Canadians say they want to die. But as the health system tries to recover from years of spending cutbacks and hospital closings, resources are in such short supply in some parts of the country that most Canadians who need palliative care do not get it. “Only about 10 per cent of Canadians have access to palliative care,” says Janet Dunbrack, executive director of the Ottawa-based Canadian Palliative Care Association. Typical of the patch-

work of services available across the country, Winnipeg’s hospitals have 50 beds devoted to palliative care, but so far no home-care program. “The situation is simply not adequate,” says Daeninck.

Even when palliative care expertise is available, says Toronto’s Librach, many hospital doctors and family physicians choose not to ask for it. “Part of it is a reluctance to talk about death or dying, because that may upset patients,” he adds. “And then there’s the sense of‘ownership’ or control that some doctors have about their patients—they don’t want outsiders getting involved.”

One of the most deep-seated obstacles toMfective pain control, experts say, is the reluctance of many doctors to prescribe narcotics. Morphine and many of the opioid drugs can be highly addictive—and

the drugs used to treat pain are often abused by recreational drug users. But in most patients, the euphoria triggered by narcotics fades after a few treatments, and withdrawal symptoms can be eased in non-terminal cases by weaning patients gradually from the drugs. Despite this knowledge, says Dr. Brian Goldman, a Toronto pain specialist, “there is still a widespread misconception that these drugs are inevitably addictive. If the drugs are administered properly, this does not happen.”

Gradually, the barriers to effective pain control are being dismantled. Canadian medical schools have begun beefing up training in pain management and some provinces are allocating more money for palliative care. “The public is beginning to recognize the need for palliative care,” says Librach, “and politicians are beginning to respond.” Reacting to growing interest, two of Canada’s governing medical bodies—the College of Family Physicians and the Royal College of Physicians and Surgeons—unveiled a program in June that will allow Canadian doctors for the first time to earn medical certification in palliative care.

And better drugs are on the horizon. “It’s not going to happen tomorrow,” says Dr. Neil MacDonald, a Montreal palliative care expert. “But over the next five or 10 years, I think well have new and powerful painkillers to work with.” In the meantime, many patients may be doomed to end their lives in misery. Contemplating her future, Alice Chen predicts she will “last a while longer, but I know I’m faced with a disease that will cut my life short. And the pain is very bad at times. It makes me angry.” It’s an emotion shared by the millions of Canadians who suffer dreadfully from an implacable foe that sometimes simply cannot be beaten. EUI