MILLIONS SUFFER SEVERE, UNNECESSARY AGONY

Patients And Doctors Fight For Clear Rules On The Use Of Narcotics For
Long-Term, Unbearable Pain

THE trouble with pain is that it hurts.

Worse, severe long-term pain packs a double wallop: it also produces
permanent neurological damage. "Pain is a disease no different than
cancer," explains internationally renowned pain therapist Dr. Frank Adams,
who left Canada in 2001 over his disagreement with the treatment of pain in
this country.

He now practises in Houston, Texas. "Pain is destructive to the body and
body systems.

It alters the immune system over the long term, gradually affects other
organ systems, and measurably changes the chemistry and electrical firing
system of the brain so that, if untreated, people end up with a range of
neuro-cognitive abnormalities which impair memory, language functions and
information-processing efficiency." Moreover, he says, a disproportionate
number of all those with chronic pain will definitely end up with
Alzheimer's disease.

New guidelines for doctors treating pain in dying patients were issued in
September (see story "Morphine, murder and mercy" in this issue),
encouraging the use of all the legal drugs needed to reduce suffering at
the end of life. What must be addressed next, many specialists say, is the
management of long-term chronic pain. Three million Canadians suffer from
pain caused by conditions not imminently fatal.

The cost to society in terms of medical expenses, lost income and lost
productivity is estimated at $10 billion per year. "There is tremendous
uncertainty among healthcare professionals and patients regarding what is
safe. The legal issue of opioids [a class of narcotic] is particularly
murky," states Ottawa health and research policy consultant Mary Ellen
Jeans, RN, PhD. With certain kinds of pain, she finds, healthcare
professionals feel impotent. "They don't know what to do, and if they feel
vulnerable or helpless, they try to avoid dealing with it. We've all been
indoctrinated to believe all narcotics are addictive, even though there is
evidence that people with non-life-threatening pain who use narcotics for
years before having their pain diminished through a new medical technique,
show no evidence they were ever addicted." The bottom line? "We need
guidelines established regarding the circumstances under which we can use
narcotics safely and legally."

Guidelines will not change anything, according to Dr. Adams. "Most of us
will still die in agony," he declares. "The World Health Organization
brought out new guidelines 15 years ago, and nothing changed.

What we need is an attitudinal change so that the medical profession is
invested in human suffering, rather than what it regards as science." So
great is his concern that he has made a pact with his wife, Melinda: he
will keep his medical licence until he dies so that he will have a dose of
morphine to give her if she needs it as she lies dying, even if it means he
goes to jail. "Did you notice how the changes to palliative-care guidelines
immediately evoked editorials on euthanasia?" he storms. "At that point,
doctors should have put down their syringes and walked out of the room."
Under the new guidelines, he predicts, it would not be long before a
caregiver is charged with murder; he himself is testifying this fall for a
friend in Utah facing five counts of murder in palliative care.

Concern about addiction inhibits many doctors, as Dr. Adams experienced for
himself when hospitalized in Toronto 15 years ago. Following surgery for
kidney stones, he was visited by a physician friend who introduced him as
an international expert on pain to the female resident on call that night.
"He said, 'Take good care of him'; she assured him she would," Dr. Adams
recounts. "But when I awoke at 2 a.m. in hellish pain and asked the nurse
to put 1/2 milligram of Dilaudid, a derivative of morphine, in the IV, the
resident was soon standing at the end of my bed, hands on hips, demanding,
'How long have you been a drug addict?' Had I not had my doctor's home
number, I would have been in agony all night."

His suggestion for attitudinal change?

People must band together to pressure the medical profession. "It really
must be a grassroots movement. Make examples of those who have died in
agony and those doctors who let them." He also suggests relatives sue for
pain and suffering. "Recently, relatives of a 70-year-old man sued a
nursing home on the [American] east coast for withholding morphine as he
was dying.

The nursing home was bankrupted and shut down."

Grassroots members of the Chronic Pain Association of Canada (CPAC)
(www.ecn.ab.ca/cpac) receive 100 calls a month from those looking for
methods to treat pain, and for doctors who will believe they have pain.
Having surveyed the country's 16 medical teaching facilities and found that
not one has an organized curriculum on chronic pain--only periodic short
lectures on the subject--they developed a curriculum which is now under
consideration by some schools; a second curriculum is available for
physicians in the field.

Edmontonian Barry Ulmer founded CPAC in 1993 after watching his father "die
in agony" of liver cancer.

Nor is it only the elderly who are frequently undermedicated; a study by
J.M. Eland and J.E. Anderson found that more than 50% of children who
underwent major surgery--including limb amputation, excision of a cancerous
neck mass and heart surgery--were not given any post-surgery painkillers,
and the remainder received inadequate doses.

In another study on more routine medical problems, random samples of
children and adults were matched with appendectomies, hernias, fractures
and burns; the children received 1/2 to 1/3 the number of doses given adults.

A growing number of experts call the mystifying problem of undermedication
a reflection of insurance bureaucracies' antediluvian attitude toward the
treatment of pain (see story below). What this means is, in the words of
American heart specialist Dr. Dean Ornish: "The insurance industry--not
science and clinical experience--is really the major determinant of
healthcare."

Many believe Dr. Adams' case illustrates the point.

A native of Hamilton, Ont., since graduation he has spent 20 years in
Texas. There, along with a colleague from the University of Texas M.D
Anderson Cancer Hospital, he wrote a set of published guidelines which led
to the establishment of the California Pain Patient Rights bill. Also, the
Federation of State Medical Examiners, which oversees all 50 state medical
boards, issued national guidelines in 1999 regarding the 2% to 3% of the
population with intractable pain. This set of guidelines encouraged the
aggressive treatment of pain, especially with opioids, and promised that a
physician who was investigated for the use of these drugs would be held to
the "standard of outcome." "In other words," Dr. Adams explains, "did the
patient benefit from the treatment?

The notion is so simple it's radical."

Returning to Canada in the mid-1990s, Dr. Adams was recruited by the
Ontario Ministry of Health to start a service for brain-injured patients.
In 1999 the College of Physicians and Surgeons of Ontario (CPSO) tried to
remove his licence, claiming that he failed to maintain the standard of
practice of the profession, ignoring the fact that no examples of harm to
patients existed from the practises that they disliked.

A flood of thousands of protests delayed the CPSO's decision; eventually
his licence was restored, with restrictions. Dr. Adams found the
restrictions "intolerable" and left the country.

"Living under restrictions would have been an acknowledgement that they
were somehow right, and it wouldn't have changed anything in Ontario," he
explains. "Have things changed?

Yes, they're worse.

Nobody will treat pain; patients write me letters explaining the horror
their lives have become because their family doctors are too frightened to
follow my formula. They're afraid of the College [of Physicians and
Surgeons] and don't trust it; it acted so stupidly without any thought to
consequences of its actions. People who were functioning are now in bed all
day long. They're irritable again, their families don't like them; they sit
and lie around hoping something will happen and they can somehow die."

College spokeswoman Kathryn Clarke responds that Dr. Adams had the legal
recourse to appeal the decision and chose not to. "He was found guilty of
something and is not happy.

Plenty of people practise in that area of medicine and are not having any
difficulties."

Dr. Adams believes the Workers Compensation Board (WCB) is behind his
problems with the college. "You begin to see patterns.

They figure out that you're doing something that is costing a lot of money
and the need is ongoing, and they go to conventional wisdom, that opioids
are addicting, dosages too high, even though it's refuted by clinical
practice and the literature. The WCB files against you to the Canadian
college or state board, and they have no choice; they are required to
launch an investigation, yet the complainant remains anonymous--you don't
know your accuser. They function outside the democratic processes and hope
to scare you off or cost you your licence, just to get you off their case."

A former colleague of Dr. Adams, Ottawa Civic Hospital anesthetist Dr.
Ellen Thompson, who served as an elected member of council with the CPSO
for the 1997-2000 term, suggests physicians working for the Workplace
Safety and Insurance Board (WSIB) may indeed have initiated the complaint
against Dr. Adams. "I became aware of this through correspondence in my
review of files about injured workers being prescribed opioids.

This goes back to the early 1990s when WCB (now WSIB) doctors were
'convinced they knew' that opioids were the cause of workers not being
motivated to return to work. Since then, there has been a change of
attitude; WSIB doctors now seem to accept that relief of pain, even through
quite heavy doses of opioids, can be appropriate. But some of these
attitudes are still found amongst key members of the college and their
advisers, primarily addiction specialists with no knowledge of pain
management. They've got it woefully wrong."

Dr. Thompson is concerned that there are no specialist exams in the area of
chronic pain. "Doctors can just pronounce themselves a pain expert and if
they refuse to prescribe opioids, the college looks on them favourably."

Meanwhile, Dr. Adams has taken up the continued fight for better pain
management in his U.S. practice and through his appointments to the boards
of the Texas Cancer Pain Initiative, the Texas Pain Society and the Texas
Patient Advocacy Group. Of treating pain, he says: "It's a greater thrill
than anything, after a long time of struggling, to see patients slowly
improve some quality of life. You're just looking forward to seeing them
again because they're in much less misery; you can see their human side.
Someone who was b---hy, annoying, whining, and you were thinking, 'Oh s--t,
I hope they don't come back'; if you get rid of their symptoms, you
resurrect the human underneath and meet the nicest people.

People have brought me flowers, fresh fish, Natives have brought me
venison, quail, duck, more wine than a brewery, eggs, jam, breads.

It's a personal thing; they're thinking about you. Tell me," he smiles,
"could a doctor want any more?"

Painful facts

While over 70% of cancer patients experience moderate to severe pain, fewer
than half receive adequate pain relief.

A survey in the Medical Post (July 1999) indicated that 55% of physicians
in Canada felt their peers were not doing enough to treat cancer pain, and
that only 30% of practising neurologists felt adequately trained to treat
the entire spectrum of pain disorders. Yet many experts say 90% of cancer
pain can be relieved through relatively simple means (International
Association for the Study of Pain, 1997).

A study at one large medical centre found the majority of patients who were
in moderate to severe pain were not even asked by their doctors or nurses
if they were having pain (National Council on Aging, 1997).

One of the most common reasons why people buy books on suicide and
physician-assisted suicide is the fear of living in severe, intractable pain.

In a large survey of oncologists, 86% felt that the majority of patients
with pain were under-treated (Journal of Pain and Symptom Management, 1997).

Patients and healthcare professionals are embarrassed about pain, reluctant
to acknowledge and talk about it candidly; thus, they are often judgmental
and ineffectual in dealing with or managing pain. Society has taught us to
"learn to live with it," and it will "make us a better person." No one
should ever have to suffer unbearable pain for even short periods of time.

Chronic Pain Association of Canada

Seeing is believing

Chronic pain causes an increase in the spinal fluid of "Substance P," a
chemical that transmits pain signals.

Substance P shifts the pain threshold down so that stimulus either produces
more pain than normal or produces pain when it would not normally be produced.

Pain increases the level of beta endorphins and enkephalin in the spinal cord.

Pain activity can be detected on a printout from a cathode ray tube which
indicates electrical activity in nerve cells.

Long-term pain creates measurable deleterious changes at the cellular level
to the cortex of the brain as well as the spinal cord. This affects the
amounts of chemicals stored or released by the nerve cells.

Chronic-pain patients metabolize opiates in a different way than those
without pain. In addicts, opiates create drowsiness, but in pain patients,
the introduction of opiates presents an equivalent to insulin being given
to a diabetic: it restores brain functions and thereby the immune and
endocrine systems.

Without effective and complete pain relief, all systems eventually become
exhausted and people literally die.

Dr. James Henry, professor and chairman of the department of physiology and
pharmacology, University of Western Ontario

Is it pain or 'Railway-brain'?

IN an article entitled "The Disparagement of Pain: Social Influences on
Medical Thinking," neuropsychiatrist Harold Merskey, professor emeritus at
the University of Western Ontario, writes that patients with pain often
feel that their suffering is taken lightly or even denied.

He traces the respect with which pain was regarded in a doctor's discourse
in 1799--"I am about to talk to you about one of your enemies; the eternal
enemy of the human race"--down through the years to a patient's comment in
1989: "Why do people not believe me? Why do I have to prove I have pain?"
In the winter 2000 issue of the journal of the Canadian Pain Society, Pain
Research and Management, Dr. Merskey claims that negative attitudes toward
post-traumatic pain began to emerge when it became an issue in compensation
claims with the rapid growth of railways--and rail accidents--in the 19th
century. In 1867 Sir John Erichsen attributed painful symptoms to blows to
the spinal cord, even though the blow had caused no external signs.

He was challenged by H.W. Page, a surgeon to the London and Northwestern
Railway Co., who argued that the painful effects were attributable to
fright or "hysteria." J.M. Charcot observed in 1889: "Quite recently male
hysteria has been studied in America...They have recognized that many of
these nervous accidents described under the name of railway accidents, and
which according to them would be better described as Railway-brain, are in
fact, simply manifestations of hysteria...The victims of railway accidents
naturally demand damages from the companies.

They go to law; millions of dollars are in the scale.

Now I repeat, it is frequently hysteria which is the agent in these cases."

With the passing in 1880 of the German act providing compensation to
injured workmen, patients came to be treated with increased hostility by
doctors who were now employed by insurance companies.

In 1939, F. Kennedy delivered his famous line about compensation neurosis:
"a state of mind, borne out of fear, kept alive by avarice, stimulated by
lawyers, and cured by a verdict." After this was echoed in 1961 by H.G.
Miller, a review was conducted of 10 studies since the Second World War,
not one supporting Miller's claims, apart from Miller's own work as an
examiner for insurance companies. "Assertions of this type, repeatedly made
with or without evidence," Dr. Merskey argues, "are bound to have an impact
on the thinking of medical practitioners." Any time that pain is rejected
on the grounds of psychological causation, he recommends, much more work
has to be done by way of proof than in the past.