ON PAIN OF DEATH

Too Many Terminally Ill Die In Agony While Drugs Exist To Help

Less than 10 per cent of terminally ill Canadians have access to any
kind of palliative care in their final days. That means that all too
many people are dying in needless pain, sometimes agony, even though
the drugs exist to release them from their anguish.

Why do the few get relief and not the many?

Because the myths surrounding powerful painkillers are still rampant -
among patients and their families who know no better, but also among
the general mass of doctors who should know, and don't.

Last month, a Senate committee report on the abysmal state of
end-of-life care in Canada said that despite the existence of improved
pain control, "fear of possible consequences among physicians, often
reinforced by family members, still inhibits proper drug use,
unnecessarily increasing suffering at the end of life."

Outdated fears of addiction, side effects and patient tolerance remain
widespread in the medical profession, though doctors who specialize in
terminal pain say none of these concerns is valid today.

"You'd think we would have licked this problem by now," says Toronto
pain specialist Dr. Brian Goldman, "but we haven't."

Most doctors, particularly family physicians in the front line of care
for the dying, know next to nothing about end-of-life pain, much less
how to treat it. And for one simple reason: they've never been taught.

With ever-increasing subject matter to cover, it's not uncommon for
students to get only one hour of pain management instruction in four
years of medical school, Goldman says. And alleviating suffering in
the last stages of life is not - stunning though it may be to the
public - a priority.

"It is just assumed they'll know how to do it or learn as they go
along," says Dr. Laura Hawryluck, an intensive-care physician at
Kingston General Hospital.

"But that attitude doesn't recognize the complexities of pain or the
variety of drugs and techniques now available to handle it."

It's during post-graduate residency that most young doctors pick up
some knowledge about pain control by following the practices of the
physician they're working under. But those practices are frequently
out-of-date or inaccurate, critics say. If the doctor is still using a
drug such as Demerol, for instance, trainees learn to rely on it, too,
though palliative units have long since abandoned it (because it can
cause seizures).

"There's a gap between what the public expects and what our training
provides," says Dr. Neil MacDonald, director of cancer ethics at the
Clinical Research Institute of Montreal and a noted palliative-care
physician.

But "the relief of suffering should be the fundamental role of good
medical care, not just palliative care."

Doctors, however, can't practice what they don't know, or even know
what they don't know, critics of the current system say.

Most GPs see only three or four dying patients a year and have little
experience in identifying, let alone counteracting, the intense pain
of incurable disease; congestive heart failure, degenerative
conditions such as ALS or, as in 90 per cent of palliative cases,
untreatable cancer.

About 9 per cent of the calls received by the Canadian Palliative Care
Association in Ottawa are from GPs asking about painkillers, executive
director Janet Dunbrack says.

In hospitals, there is often a reluctance to call in experienced
palliative doctors because their work is still seen by many as
hand-holding, or "soft medicine." Even when that isn't the case, there
are only about 50 such experts in the whole of Canada.

Margaret Anderson discovered that in 1997. After setting up a six-bed
hospice in Oakville in honour of her husband Ian, who died of cancer
in 1990, she found there were no palliative doctors available to work.

That leaves patients to the not-always tender mercies of their GPs,
some of whom "won't follow their patients into the hospice," she says,
because fee-for-service doesn't make time-consuming visits financially
viable. Others have no idea how to treat severe pain in the final stages.

"There is no excuse for that," she says vehemently. "Doctors are
trained to treat disease until the very last minute. But when all hope
is gone, people shouldn't just be cut off. There should be transition
into care where their pain is taken care of."

On the face of it, few would disagree. But pain management won't
become more available, let alone routine, until myths about powerful
drugs are rooted out of the medical profession, says Dr. Mike Harlos,
head of palliative care at Winnipeg's St. Boniface Hospital. That
means family doctors and, because 75 per cent of deaths still occur in
hospitals, specialists as well.

For a start, addiction doesn't happen in the dying patients, a fact
confirmed in numerous studies, he says.

When medications such as morphine (or the even more potent
hydromorphine) are used to fight pain, that's all they do. Patients
don't get high. Harlos has treated former addicts who didn't become
readdicted.

He and other pain specialists say the common fear that a patient will
develop a tolerance to a drug and therefore "something should be held
in reserve" is misguided. It ignores the fact that a painkiller may no
longer seem effective because the cancer has spread, not because the
drug itself doesn't work. In a strategy little known to many
physicians, spot radiation for palliative purposes can quell pain in a
new location.

Fear of side-effects such as delirium or constipation is also
prevalent but unwarranted. Doses can be readjusted, or a different
drug or drug combination - the arsenal now includes synthetics called
opioids as well as opium-derived morphine - can be used.

Judy Watt-Watson, who teaches pain management at University of
Toronto's nursing faculty, says if drowsiness is a concern, there are
non-sedating drugs that can be used.

"The skill lies in knowing how to use them. But if increasing a
medication will make a patient sleepy in the final stage, they should
be told that, and they can say, as many do, 'I want one more day.'
That is their option."

Families are often afraid the end will be hastened if strong drugs are
given. If anything, Harlos says, unrelieved pain puts a tremendous
load on the system, and the right drug level can slow things down a
bit. He knows, however, that morphine phobia is endemic.

"If morphine is given every four hours to a dying person and the
person dies, the morphine is blamed," he says. "You could give water
every four hours, and the patient would die."

Nevertheless, the "double-effect" quandary - the risk of causing
terminal sedation through pain relief - is a real fear among doctors,
for legal, if not medical, reasons. As Goldman puts it: "Some
physicians run for cover so as not to be accused of aiding a suicide."
Or committing murder.

The double effect is a genuine dilemma, says oncologist social worker
Magdalene Winterhoff, which is why doctors have to know how drugs work
and interact.

"The patient may be asking for more medication, but oxygen levels go
down with greater doses and you may indeed bring on death."

Conversely, physicians also need to learn that some patients can't
communicate the degree of their pain, she says, or try to tough it out
until the suffering becomes unbearable. "You try to explain to them
that it's better to have gas on board, so to speak, and not have to
fill up when they run out."

Many people still believe that dying, certainly from cancer, is
supposed to be painful. But, in fact, only 2 to 5 per cent of patients
have such nerve involvement that the pain can't be controlled without
inducing unconsciousness. Another 20 per cent need expert pain
management because their condition is complex, says Dr. Lawrence
Librach, head of palliative care at Mount Sinai Hospital.

The rest should be relatively straightforward to treat, yet "people
die in agony," he says, not just because few doctors know what to do
but because hospitals have no standards on pain assessment.

In veterans' hospitals in the United States, pain is considered the
fifth vital sign (after temperature, pulse, respiration and blood
pressure), and is regularly rated from one to 10.

"But here, outside of palliative-care units, the attitude often is
'It's only dying people, it's only pain,' " Librach says.

"It doesn't have to be like that. The public should know it has the
right to pain control on all wards. Hospitals should set standards and
be able to say, 'People will not die in pain.' "

Individual physicians should be saying that, too, says Hawryluck. If
the acknowledgment of dying - and, therefore, the failure to have
cured - runs counter to the motivating philosophy of some, it's time
they learned otherwise: the relief of suffering at life's end also
comes with the job.

"If conquering disease is the only role of physicians," she says,
"then we've got a big problem."

Caring for the dying is "not the area most choose for a career,"
admits Paul Rainsberry, education director of the College of Family
Physicians of Canada.

Indeed, despite the emergence of specialists in the field during the
past 25 years, palliative care is not a certified specialty in Canada.
An application to make it one (as in Britain, Australia and New
Zealand) was rejected in 1996 by the Royal College of Physicians and
Surgeons because of concern over proliferating specialties in an era
of shrinking health budgets, but also because the college felt
terminal care should be knowledge common to all physicians.

To that end, a one-year post-graduate program was approved by the
college last summer. But just seven of Canada's 16 medical schools
have applied to provide it, with only four students signing on last
year and eight enrolled for this fall.

Still, says Rainsberry, "there is huge, huge interest in the
area.

"Most family doctors are keenly aware of the need for special
training. They're the workhorses of the system and, as more people die
at home, more terminal care is being delivered by them. This course
will give it better status."

Critics say that it's not just students who should be learning about
end-stage pain, but practising doctors as well.

A continuing-education program targeted at them, and based at U of T,
is to begin this fall. Over the next five years, 10,000 physicians
across the country will take a case-oriented course on all elements of
palliative care, the "soft' aspects of treating fear and anxiety in
the dying, but also the hard medicine of terminal-pain management.

"The goal is for them to go back and train others," says project
director Hawryluck, adding there will also be a Web site for
physicians and the public to ask questions about pain.

The project is funded by a $1 million gift to U of T by Margaret
Anderson. She donated the money because she is convinced the medical
profession must change its attitude.

"The need is already obvious, and 10 years down the road, with the
baby boomers, it's going to be terrible."