IN SEARCH OF A GOOD DEATH

Sometimes When Pain Holds On, The Greatest Challenge Is Letting Go

After four years and multiple rounds of chemotherapy, radiation
treatments and surgery, Sylvia Sharnoff's battle with cancer was about
to end.

The 54-year-old Berkeley nature photographer and writer was fresh out
of options. One more trip to the oncologist only confirmed the bad
news.

The cancer would have its way. It would not be long. But as one battle
was ending, another was intensifying: the struggle for a few good
days, or hours, or even minutes. Now, the enemy was pain -- and the
terror of knowing it would not get any better.

Nothing more could be done, Sharnoff's pain specialist told her. From
now on, it was all up to her.

``It was a hard message to hear,'' she said. ``That's it. I'm at the
end of the road. . . . It's just something I have to get my mind around.''

Much the same battle is being waged every day by untold thousands of
people struggling to hang on to life while dying in pain. At home with
her husband, Steve, Sharnoff described her fight as one she was
desperate to win.

``I have some things I want to do,'' she said.

Four out of 10 dying patients are in severe pain most of the time,
according to one recent survey. In another study, surviving family
members judged pain to have been ``moderate to severe'' during most of
the dying person's last three days of life.

Such findings come as no surprise to those hoping to improve the
quality of end-of-life medical care. And if the numbers paint a grim
picture of death in America, experts insist that the statistics only
mask the real tragedy: Most of the suffering can be avoided.

Rather than four or even five in 10 dying in pain, ``it should be less
than one in four,'' said Dr. Russell Portenoy, director of pain
management and palliative care at Beth Israel Medical Center in New
York.

He and other pain specialists have spent more than a decade
proselytizing for more effective treatments for pain sufferers.
Advocacy groups have also been established to promote the rights of
the dying to adequate pain relief.

And the so-called pain movement in American medicine has resulted in
the passage of model legislation in California and several other
states that is designed to encourage more doctors to prescribe strong
opiates without fear of prosecution.

Research has led to more effective drugs and better ways of delivering
them through pumps, patches, candylike sticks and sustained-release
pills.

Doctors are being urged to take pain symptoms seriously. The Veterans
Administration, borrowing a long-standing slogan of pain management
specialists, recently elevated pain to the status of ``fifth vital
sign.'' The idea is to gauge pain symptoms with the same precision as
temperature, respiration, blood pressure and heart rate.

Despite such advancements, four months of interviews and bedside
visits with people in terminal stages of illness revealed that
adequate pain relief remains an elusive goal -- an exception, rather
than the norm.

``Even though we are making strides in end-of-life care, especially in
pain relief, the current care system still falls short,'' said Dr.
Joanne Lynn, director of the Center to Improve Care of the Dying at
George Washington University Medical Center in Washington, D.C.

There are many reasons for the failure.

Perhaps the factor cited most often is that physicians are still
reluctant to prescribe strong pain medications for fear of running
afoul of drug-control authorities. If convicted for writing
``unwarranted'' prescriptions or overprescribing controlled drugs --
including Vicodin, Percocet, morphine and methadone -- they can lose
their licenses or even go to prison.

And despite growing recognition that some patients require high doses
of narcotics -- drugs that are highly effective in treating pain --
there is still a stigma attached to their use.

Some of the fear is based on mythic tales of overzealous prosecutors,
said Ann Alpers, a researcher at the University of California at San
Francisco. After an exhaustive nationwide search, she found only five
cases since 1990 of doctors charged with overprescribing painkillers
to dying patients.

Unfortunately, there have been a few high-profile cases, said Sandra
Johnson, provost of Saint Louis University, who is doing research
sponsored by the Mayday Fund, a philanthropy seeking to improve pain
treatments. ``And a few high-profile cases are enough to scare a lot
of doctors.''

Northern California pain specialists said the recent arrest of Dr.
Frank Fisher in Shasta County -- on charges that included three counts
of murder -- will help fan the fears. Fisher, a chronic pain doctor,
denies wrongdoing.

Another high-profile case involved Dr. William Hurwitz, a pain-control
specialist in McLean, Va., outside Washington, D.C., who lost his
medical license for two years on charges of overprescribing drugs for
chronic pain sufferers.

After winning back his right to practice medicine, Hurwitz, a graduate
of Stanford Medical School, said he now sees patients from all over
the country who are struggling with intractable pain and spotty access
to drugs. The problem is a ``Kafka-esque regulatory environment,''
Hurwitz said.

Difficulties in obtaining medication are most common in chronic cases,
but even dying people sometimes find it hard to get adequate amounts
of medication.

For those reasons, the California Medical Board, as far back as 1994,
spelled out in detail how doctors could safely prescribe opiates for
those in need. Nevertheless, many physicians still think investigators
``are lurking behind every gurney and office wall,'' said Dale
Ferranto, special agent in the Los Angeles region for the state Bureau
of Narcotics Enforcement. ``And basically, it's just not true.''

The fears, said researcher Alpers, may serve as a convenient
excuse.

``It's a way to mask a more subterranean practice of poor management
of pain for dying patients,'' she said. ``It's an easy way to explain
away our undertreatment of pain.''

Even the best treatments can fail, however. Sometimes, no amount of
help can make things better.

In Sharnoff's case, doctors could not stop the cancer, or even
determine where it had started. But for her, there was no point in
worrying about any of that now.

These days, what mattered most was the searing pain in her right arm
and shoulder. It had plagued her for a long time, but lately was
becoming so bad, she could barely concentrate on anything but getting
herself in just the right position, usually lying down, while her
husband helped adjust the pain drugs.

The pain was the byproduct of some of the cancer treatments, as well
as the effect of the advancing cancer invading sensitive nerves. Now,
as her time dwindled, the pain was sometimes beyond the reach of
drugs, or required such high doses that she feared losing the precious
few days she had left in an opiate fog.

``It's terrifying,'' she said. ``I don't have room for any more
pain.''

The Sharnoffs, partners in photography, were in the final stages of
their masterwork, an obsession for the past eight years -- a
stunningly beautiful illustrated textbook on lichens.

Their daughter, 28, in medical school in Chicago, was due to visit
soon for the holidays. Friends were calling and visiting. On this
particular day, rain was giving way to warm sunshine in Berkeley, and
the light streaming into the front room, where Sharnoff was resting,
stirred her hope of witnessing another spring-wildflower bloom in the
Sierra.

``I don't feel depressed,'' she said. ``But I do feel this may become
intolerable pretty soon. Lately, it's been getting a lot harder to be
optimistic.''

Not long after that bright day, Sharnoff was unable to speak above a
hoarse whisper. The cancer may have invaded her throat, doctors said,
and was pressing against the voice box.

She had recently undergone a somewhat delicate procedure known as a
percutaneous partial cordotomy -- a last-ditch attempt to surgically
block the pain.

During that procedure, she had stretched out on her back in the
operating room at UCSF, eyes closed to the bright lights and video
monitors. Neurosurgeon Nicholas Barbero injected a local anesthetic
into the left side of her neck, then inserted a long flexible needle
that would sheath the electrode needed to complete the procedure.

Sharnoff had to stay awake in order to help Barbero guide the
electrode to just the right spot, where a precise jolt of heat would
be applied. The goal was to scramble the nerve cells relaying the pain
without disrupting nearby spinal circuitry.

Barbero watched on a video monitor, jiggled a bit on the wire sticking
into Sharnoff's neck, directed the technician to turn the current up
or down on the machine hooked to the electrode, asked Sharnoff to
report exactly what she felt, then did it all again, dozens of times
over the span of an hour and a half.

For the neurosurgeon, it was like feeling his way in the dark, with
little besides his patient's words to guide him.

``I feel odd,'' Sharnoff said at one point, struggling to stay focused
but clearly growing weary of the ordeal. ``Like an
emptiness.''

Barbero seemed frustrated, too. It was his second attempt at producing
a good result for her -- and it did not seem to be going well.

``Describe the pain, just what you are feeling right now,'' he told
her. ``I don't know what to do with `emptiness.' ''

``It's not pain exactly,'' she replied. ``More like a
vacuum.''

And so it went. After several more attempts at describing the
sensations triggered by small test jolts in her spine, the lesion was
made, and Barbero concluded that he had done all he could. He judged
the procedure to have eliminated at least some of the heightened
sensitivity in Sharnoff's arm.

Two weeks later, Sharnoff was disappointed.

She found that the agony she had long been suffering in her arm had,
in fact, eased a bit. But now she realized that her fingers were all
but useless, the arm essentially paralyzed.

Worse, the pain seemed to have jumped into her shoulder and neck, and
even seemed to be creeping across to her left side. The tumor appeared
to be advancing way ahead of the pain control. The surgeon had done
nothing wrong; the cancer was just too aggressive.

It was now a matter of weighing the effectiveness of morphine against
its sedating side effects. For many patients, other drugs can be used
to lessen the grogginess, but none of these worked for Sharnoff.

Something else was bothering her as well.

Friends said she was the type of person who wanted to be in control:
generous with others, solicitous of feelings, but stubborn, too -- a
perfectionist in her projects and many other parts of her life. She
was not one to leave anything to chance.

Sharnoff hoped that others might benefit if her struggles with pain
were publicized. But she was concerned now about coming off as a whiner.

She wanted to make it clear that she was struggling against the pain
while remaining at home with her family, trying to preserve what
counted in her life. ``I don't like feeling helpless,'' she said. ``It
would bother me if I were to come off as an idiot.''

She also was bothered by the fact that there was no resolution in
sight. She had agreed to allow a rare public glimpse into this most
private time, and despite everything that was tried -- even a
hypnotherapist was starting to come around -- the pain remained.

``I'm concerned about your story,'' she said. ``I mean, how is it
going to come out? We've done all this stuff, and there's still no
ending.''

It was after her last trip to the oncologist that everyone decided it
was pointless to continue trying to slow down Sharnoff's cancer.
Finally, she was able to qualify for home hospice care.

Treatment tends to improve remarkably once a person makes it into a
program that emphasizes quality of life, rather than trying to extend
it. Whether at home or in a health care facility, hospice programs
typically provide a comprehensive, state-of-the-art plan for pain control.

Unfortunately, Medicare will not pay for hospice services unless
doctors affirm that death is imminent, no more than six months away.

These prognoses can be extended without much difficulty, but too many
extensions can raise questions about whether a physician is acting in
good faith. Some hospice doctors have been investigated for Medicare
fraud, although no criminal charges have yet resulted. Others have
been audited and forced to return the government money they received.

As a result, entry into hospice programs is often delayed until there
is very little doubt about a patient's condition being terminal. Death
frequently comes within a matter of weeks, often days. The national
average hospice stay is two weeks, but ``there's no reason that number
shouldn't be 180 days,'' said Dr. Kenneth Pienta, who is leading a
pilot program in Michigan that seeks to bring people under hospice
care much sooner.

Until such experiments become standard practice, most terminal
patients spend all but their final days supervised by doctors who do
not necessarily specialize in pain relief.

Picking up the pieces of lives being shattered by pain often falls to
people like Linda Blum, clinical supervisor in San Mateo for the
Emeryville-based Visiting Nurse Association and Hospice Program, a
regional nonprofit that cares for about 180 people on any given day.

``Usually they're undertreated,'' she said. ``Occasionally, they're
overtreated. For almost every one of our patients coming into our
program, we have to make some kind of adjustment in the treatment plan.''

However, experts readily agree that no scientific breakthroughs are
needed to make a huge improvement in end-of-life care right now. Some
patients might not experience total relief, but almost everyone can be
made comfortable.

Counseling can help even those whose pain remains.

``It's all there -- it's just getting physicians to use it,'' said
Randolph Merrick, a Virginia physician who is part of a national
movement to improve the treatment of pain.

What is lacking, he said, is the right attitude

- -- and the will to put it into practice. The unfortunate result can be
seen in nursing homes throughout the country, where older people
experience the worst pain and generally receive the least effective
drugs for it, surveys show.

Health providers do not always ask the right questions, Merrick
said.

``We need to trust our patients, listen to them and believe what
they're telling us,'' he said, adding that pain relief should be
offered to every dying person.

At the Center to Improve Care of the Dying, director Lynn said it is a
matter of changing the culture, convincing patients they need not die
in pain, educating families to be more alert to the symptoms, and
persuading caregivers to set aside their fears of legal reprisals for
aggressively treating pain.

``We have been quite enamored of developing new breakthroughs in
medicine,'' Lynn said. ``That's not it here. It's a pervasive
blindness.''

How often, she asked, does evening television portray ``someone very
sick, and staying sick for a very long time, and then dying? We don't
want to see it or think about it. We just haven't made the changes in
the culture necessary to support those people.''

Sylvia Sharnoff's husband and daughter were holding her
hand.

It was early afternoon, New Year's Eve. After fighting to hang on to
life, it seemed that Sharnoff had finally realized it was OK to let
go, that her book was as complete as she could make it, that now it
was time for the work of dying.

Winning this fight, in the end, meant letting go of the
battle.

It was difficult to tell exactly what she was experiencing. She did
not speak. Her breathing slowed, and the spaces between each breath
grew longer. Finally, there were no more breaths.

Later, Steve Sharnoff said he felt that she was comfortable the last
few hours.

``It was very peaceful and natural,'' he said.

``I think she knew we were there. The pain medications had to be
increased considerably in the end, but she didn't appear to be in any
particular pain when she died.''

The pain was gone. Sylvia had won.

It was a rare death.

FOR OTHERS' SAKE, THE FACE OF TORMENT CAN BE HIDDEN

Pain was a private experience for Shirley Press.

For those around her, it was hard to tell just what she was going
through --

she had grown accustomed to a level of torment few people could
fathom, let alone tolerate.

Hers was one of the many faces that pain takes, a common one, as it
happens: a facade to spare those around her. Medications and support
had helped ease some of her worst pain, though agony sometimes broke
through. She was determined to enjoy what little of life was left to
her.

Press suffered hundreds of broken bones, the result of an inherited
condition, osteogenesis imperfecta. Living alone in a San Mateo
apartment, she used a walker to get around as best she could, too
frail to risk excursions outside. She read novels and biographies when
she could muster the strength, but now her eyesight was failing. She
was nearly deaf, a complication of her bone condition, and
communicated by reading the lips of people whose speech patterns she
had studied.

She chatted this way for more than an hour one recent afternoon,
leaning back on her couch beside visiting nurse Diane Gillen, who
patiently repeated the questions Press could not understand.

Even with the interpreter, Press had trouble describing the pain. She
seemed remarkably cheerful.

Someone handed her a color-coded pain scale, ranging from benign blues
and greens to searing yellows and reds at the extreme of agony.

``Right now,'' she said, pointing, ``it's about here.''

She picked a color just past ``distressing'' at the edge of
``horrible,'' though her pain did not show. She smiled, giggled and
made gentle jokes about being awakened at dawn by her small army of
caregivers.

It soon became clear that she agreed to be interviewed mainly to sing
the praises of Gillen and her colleagues -- how selfless they were,
how tenderly they cared for her. ``Put that in the story,'' she ordered.

Relenting finally, she said that coping with pain her whole life had
set up an armor, an attitude that emphasized enjoying the good things
in life, which, she said, were many but fleeting, so you had no choice
but to make the most of them when you could.

Many pain sufferers are similarly reluctant to complain, said Kathryn
Tucker, legal affairs director for Compassion in Dying, an advocacy
group based in Portland, Ore.

They worry that family members will regard them as drug addicts if
they demand high doses of opiates, or are afraid that their doctors
will take offense if they speak up. They might also assume there is
just no way around the suffering.

``People think they're supposed to be in pain when they're dying,''
Tucker said.

Press, 72, was not much interested in discussing pain or death. She
spoke fondly of friends and family, the ones who came to visit,
including a nephew, and the ones who lived too far away, including a
daughter, who inherited Press' bone condition, and who, by strict
agreement with her mother, was staying away these days, for fear of
being overwhelmed by a darkening vision of her own last days on Earth.

The lovely little things that most people take for granted, such as
shopping and taking walks, were only memories now, but memories are
sweet, too, Press said.

How had she found the strength for such a positive attitude? Press
looked puzzled. Gillen had to move in close and loudly repeat the
question. She pondered a moment before answering.

``Thank you,'' she said finally, ``for recognizing this hasn't been
easy. But I really don't think I had any choice.''

Two weeks later, she coughed too hard and broke two ribs --
particularly painful fractures that caused agony with every breath.
Doctors briefly hospitalized her in the hope of bringing the pain
under control, but were unsuccessful.

She was sent back home, as she wanted. She was suffering from
pneumonia. She developed a fever, stopped eating, would not drink.

She could not move. She could no longer even read lips.

She died in her bed about 4:30 on a Sunday afternoon, two hours after
Gillen's last visit. She could no longer express what she was feeling,
but those closest to her feared it was not an easy end to a difficult
life.

``I don't think we ever got her pain under control,'' Gillen said.
``We were never successful getting her comfortable.''

HOW TO COPE

Some pain problems are difficult to solve completely, but experts
insist that most people can find relief.

Start by making sure your doctor or caregiver understands what you are
experiencing. You may need to seek out special help for problems that
your regular provider cannot fix.

Multidisciplinary pain centers that offer specialists, counseling and
support are becoming more common, though there are still too few to
serve current needs.

Here are other places to find help:

- -- Worldwide Congress on Pain, sponsored by the Dannemiller Memorial
Educational Foundation, offers a comprehensive list of Web sites,
phone numbers and addresses at www.pain.com. The Web site also
includes online physician Q&As and lists of specialists by location.

- -- American Society for Action on Pain, or ASAP, (www.actiononpain.org)
offers support, advocacy and referrals. Skip Baker, president, (757)
229-1840.

- -- American Chronic Pain Association in Rocklin (Placer County),
Calif., at (916) 632-0922, or www.theacpa.org, has local chapters nationwide.

- -- National Chronic Pain Outreach Association offers information and
outreach, (540) 862-9437.

- -- Compassion in Dying, (503) 221-9556, or www.compassionindying.org,
offers counseling and other resources, and reviews suspected cases of
inadequate pain treatment.

- -- Center to Improve Care of the Dying, (202) 467-2222
(www.gwu.edu/~cicd/) at George Washington University Medical Center,
conducts education, advocacy and research.

NEW WAYS TO PAIN RELIEF

Morphine and related drugs, which mimic natural body chemicals called
opioids or endorphins, are often the best choice for terminally ill
people in severe pain. Today these opiates come in a variety of new
forms, while promising alternatives are on the horizon:

- -- Slow-release pills such as OxyContin can work as long as 12 hours
per dose.

- -- The quick-acting Actiq morphine ``lollipop,'' manufactured by
Anesta Corp., can relieve breakthrough pain upon placement in the mouth.

- -- Morphidex, from Algos Pharmaceutical Corp., combines morphine with
a drug that blocks the body's pain-signal receptors; it is awaiting
Food and Drug Administration approval.

- -- Experimental drugs now in testing include ziconotide, from Elan
Pharmaceuticals Inc., derived from snail venom; and ABT-594 from
Abbott Labs, based on poisonous frog venom.

Strong narcotics, meanwhile, should not be feared, experts say.
Psychological addiction among the terminally ill is rare, and that's a
moot point anyway for those with little time left. For them, experts
agree, the real problem is undertreatment.