MANAGING LIFE'S PAIN

Carol Derbyshire was interviewed for the following story on Tuesday.
On Thursday she died "peacefully, surrounded by those she loved,"
according to her son Jay Bartholomew. Derbyshire was eager to share
her end - of - life battle with the readers of the Tribune-Herald.

It is our hope, as it was hers, that her story will help draw
attention to the issue of pain management in the wake of a terminal
illness.

At age 76, Carol Derbyshire has led a remarkable life by anybody's
standards.

She has published two books under the name Carol Bartholomew. "My
Heart Has 17 Rooms" is about her experiences working in a hospital in
India. "Most of Us Are Mainly Mothers" is a child - rearing manual.

She has raised six sons - "all good citizens and terrific people" -
and has "a whole truckload of grandkids and some great - grandkids."

Derbyshire also is dying, and in her words, "it isn't
pretty."

A smoker for more than 50 years until quitting about three years ago,
she has congestive heart failure, emphysema, and both rheumatoid
arthritis and osteoarthritis.

"It's been a lot longer than I would have expected it to be,"
Derbyshire said. According to Derbyshire, her personal physician, Dr.
Alice Adee - who is also medical director for Hospice of Hilo - put
her on palliative care when her life expectancy was put at six months.

That, said Derbyshire, "was eight or nine months ago."

Palliative care is all about managing pain and making the patient as
comfortable as possible. Palliative care includes pain medication and
other techniques to maximize patient comfort and minimize pain, such
as massage.

"Basically, palliative care is used as an alternative to or in
conjunction with curative care," Adee said. "And most of modern
medicine for the past 50 years has been directed towards curative
care. You have strep throat, take penicillin - you're cured.

"What a lot of people feel has been missing from medicine is what the
tradition of medicine was up to 50 or so years ago, and that was
basically making people feel better. Because most things they couldn't
cure in the old days. What a lot of people think should be going on
is, 'Can't we cure people but also make them feel better, too?'"

Derbyshire still has all her mental faculties and is both outspoken
and colorful. But she is essentially housebound, cared for by her
youngest son, Aaron, 35. She also has a husband, Warren. Her condition
has progressed beyond what curative medicine can currently do.
Palliative care is all that's left.

"Within the last month, something happened in my back, a spinal thing
with the arthritis that's made it extremely painful to try to move at
all," she said. "I can get up in terms of getting into the wheelchair
and then getting from the wheelchair to the toilet or out to the couch
to sit. That's about as far as I can go, though. Riding in a car is
difficult because movement becomes painful.

"Hospice's primary aim is to keep me as comfortable as possible.
Physically, my heart is what it is. My lungs are what they are. There
aren't going to be many changes, except downhill. What they're trying
to do is to make my life as comfortable and pain free as possible and
as rewarding as possible under the circumstances. And I must say they
do a great job."

Adee said she got her training in palliative care when she took on the
duties at Hospice in addition to her thriving family practice in Hilo.
Although many think of pain management almost exclusively in terms of
patients with terminal illnesses - cancer, AIDS, emphysema and
congestive heart failure - Adee said many patients with chronic or
acute illnesses also need palliative care, but often don't receive
it.

"We have a tremendous problem, especially in this community, of
doctors undermedicating for pain, either thinking that the patient
should be stoic, and of family members saying, 'I want (the patient)
to be awake and alert,'" she said. "That may or may not be what the
patient really wants or needs.

"And then there's sort of the samurai thing, where you're just
supposed to buck up and suffer. We're fighting that all the time. Some
of it is generational, too, with the older doctors especially. Even me
- - and I'm not that old. But I graduated (from medical school) 20 years
ago and we were given very little training in pain management and told
that we were to definitely avoid giving anybody pain medicine,
basically. I figured out pretty early on that that was probably not
the best way to go.

"You shouldn't have to be dying, basically, to be able to have good
pain management and to be able to have the psychosocial support and
all the things that Hospice does. There's a tremendous amount of
misinformation and misunderstanding and just a lack of good training
in the medical and nursing professions, as well as misinformation
that's out there for the lay public, about what exactly this type of
treatment has to offer.

"So (Hospice of Hawaii) spends about a third of our time trying to
undo people's misconceptions about things like pain medications. The
two biggest ones are that if you take pain medications in anything
other than a tiny little dose that it's going to speed up your death
and that you're going to die. That's one that we fight all the time.
And actually, we've found out that it's pretty hard for people to die
from pain medicine. We have patients who take tremendous doses and
don't die from it.

"The other one is that you'll get addicted or have some kind of
behavioral problems. And a lot of people have negative associations
with even the names of these things, such as morphine and methadone,
and conjure up images of drug addicts and all kinds of bad stuff. We
really have to work with people to get past that, to understand how
these medications actually work, that they can be given really safely
and that people don't get addicted."

Derbyshire, who must use an oxygen tank due to emphysema, is on the
prescription painkiller Vicodin, which contains both the narcotic
hydrocodone as well as nonnarcotic acetaminophen (Tylenol) to relieve
both severe and moderate pain. She is also on the antidepressant and
muscle relaxer Valium (diazepam) and "a form of liquid morphine that
you put a drop under your tongue."

"There are various kinds of pain," she explained. "The liquid morphine
is for when I get a sudden attack and it hurts like hell all of a
sudden. The liquid morphine can work rather quickly. The Vicodin is
about the same in terms of its pain control, but it takes longer to
actually kick in and work.

"The amount I take varies a great deal depending on how I'm feeling.
There are days when I take no morphine at all and maybe a Vicodin when
I wake up in the morning and another to go to sleep at night. The rest
of the time I do without it. I take the Valium a couple of times a day
because its purpose is less that of reducing pain than it is to relax
muscles. Part of my problem is that my back muscles go into these
spasms and they need to be relaxed. And we're trying a salve, which is
quite interesting. I really don't know what's in it. It's made by the
pharmacist. It's not one of those controlled substances, but it has
something in it that acts on nerve pain. It's absorbed through the
skin and goes to the nerves. It's an analgesic.

"It isn't that I'm sitting around ingesting constant loads of
painkillers. I take them as needed depending on what's happening with
my body, how I'm feeling and whether they seem to be working or not."

Despite the pain, Derbyshire still is able to do some of the things
that give her both pleasure and intellectual stimulation.

"I play bridge on the Internet," she said. "I read a lot. I watch TV.
Several of my sons and I are nuts about movies, so at least once a
week, we try to get together and watch a movie."

Opiates such as morphine and codeine as well as synthetic opiates such
as methadone and meperedrine (Demerol), controlled substances under
federal law, all are prescribed for palliative care in the United States.

Virginia enacted a law in 1995 legalizing the use of the semi -
synthetic opiate heroin in palliative care for patients with
intractable pain, which generally refers to "a pain state in which the
cause cannot be removed or otherwise treated, and no relief or cure
has been found after reasonable efforts" (Code of Federal Regulations,
1988). It includes pain due to cancer, AIDS and other chronic and
terminal diseases.

Most believe heroin to be the most powerful painkiller and it is used
in some European nations for palliative care, but is not in widespread
use in the United States, both due to social mores and taboos and fear
of legal reprisals. Most researchers shy from doing clinical studies
of heroin's painkilling properties for fear of running afoul of
federal authorities.

"Most European countries have a more enlightened view of palliative
medication," Adee said.

Hawaii is one of eight states and the District of Columbia to have
passed medical marijuana laws, with marijuana used as a palliative, as
well as to treat glaucoma, a degenerative eye disease. According to
the state Narcotics Enforcement Division, about 920 medical marijuana
permits are currently in effect in Hawaii. But the federal government
recognizes no legal medical use of marijuana and federal courts have
ruled against doctors who prescribe marijuana and patients who use
it.

"I feel that nobody should be concerned or worried about managing pain
in the dying," Derbyshire said. "All of this stuff to legalize
(medical) marijuana or to allow patients access to certain drugs is
utterly ridiculous. We treat our animals better than that. In many
countries this isn't an issue and they have far more powerful pain
controls than what the government allows here.

"But here, if you've been around the medical system at all, you know
that for many, many patients, the point is reached where they have
built up a tolerance for anything that people are allowed to use. And
it becomes a horrendous burden for the caregiver to watch someone in
pain and to not be able to help them. It's also awful for the person
who's doing the suffering. And it's unnecessary."

For more information, visit the Hospice of Hilo Web site at
www.hospiceofhilo.org and the American Academy of Hospice and
Palliative Medicine's site at www.aahpm.org