No More Pain

On a bright November morning last fall, Iri and Philip Lever set
out on their morning ritual, a walk through the quiet, oak-lined
streets around their Montecito home. The Levers, an active couple
in their eighties, moved to Santa Barbara around 1970, when Philip
retired as an economist at IBM.

On this day, the tall Englishman with a robust beard felt
unusually tired and sat on the edge of a stone bridge on Ramona
Lane. Then, without a sound, he pitched backwards into a dry creek
bed below.

Iri Lever never carries a cell phone. (Her daughter says if
handed one, her mom will stare at it like an object from outer
space.) Yet this small, elegant woman, with her snow-white hair and
light-blue eyes, is composed in emergencies, even such dire ones.
Spotting a tree-maintenance truck parked nearby, she ran to it and
asked the driver to call 911.

Engines from the Montecito Fire Department arrived minutes
later, but retrieving Mr. Lever proved a challenge because of the
steep creek bank and property fences. At last, the firefighters
were able to gently lift him onto a stretcher, raised by a
pulley.

At Cottage Hospital’s emergency room, physicians quickly
determined Mr. Lever’s neck was broken; with time and
rehabilitation, he would probably live. As traction, a metal device
resembling a birdcage was screwed to his skull; a feeding tube
threaded down his nose; the numerous lacerations on his head and
neck sanitized and stitched. After four days of monitoring in the
Intensive Care Unit (ICU), cautiously optimistic doctors released
Philip Lever to the Santa Barbara Rehabilitation Institute.

Then, during his first night at the institute, nurses noticed
“coffee grounds” in his feeding tube — small black spots of blood
indicating internal bleeding.

Iri Lever got the call from the Rehabilitation Institute after
midnight telling her that her husband had been moved back to
Cottage. Again without panicking, she dressed and walked to the
nearby home of a woman friend. Together they drove to the ICU where
doctors doubted Philip Lever would live through the night.

Amid the rhythmic beeping of a heart monitor and the blur of
nurses coming and going from the room, Iri Lever sat beside her
husband. Around 4 a.m. she phoned their two daughters, Marian Lever
and Janet Lever-Wood, who arrived around 11 a.m., having driven
“like bats out of hell” from their respective Bay Area homes.
Pulling into Cottage’s parking lot at almost the same moment, they
made their way through the bright hospital corridors, trying to
prepare themselves for the worst. Instead they found their father
clinging to life, attached to a tangle of tubes and IV lines, their
mother still sitting vigilantly by his bed.

A young surgical resident greeted them, explaining that he
wanted to do exploratory surgery to find the source of the
bleeding. Even though he was receiving morphine through a drip
line, Mr. Lever had been asked to consent to the procedure, which
he had. But Marian believes her father would have said yes to
anything then, given his innate politeness and altered
consciousness.

Iri Lever was worried and confused. Clutching her husband’s
signed “Do Not Resuscitate” papers in her hand, she repeatedly
asked the surgeon what he planned to do if he discovered the
bleeding source. And wasn’t the procedure itself likely to kill
him?

Not satisfied with his answers, she asked if he could wait until
her husband’s personal internist arrived.

“My father wasn’t scared of anything, but he didn’t want to end
his days as an invalid in a nursing home,” Marian said. “And both
my Mom and Dad’s internist felt he wouldn’t want his life prolonged
by extraordinary measures either. But who defines extraordinary
measures? A lot of people think they’re ventilators and feeding
tubes, but actually there are many other things that can extend a
person’s life.”

These are the moments every family dreads, when healthy members
must make unspeakably difficult choices for ones too sick to speak
for themselves. According to Marian, her mom was, at this point,
nearing the end of her rope. “She needed to know if this surgery,
or any kind of invasive procedure, would provide information to
restore my father to a healthy process.” And she wasn’t getting
clear answers.

Finally, at the suggestion of their personal internist, they
asked to meet with Cottage’s Director of Spiritual Care, Reverend
Pam Washburn. Having spent the last two decades in hospitals
helping friends and relatives of the sick and dying salvage their
faith while confronting tragedy and loss, Washburn listened
carefully to the Lever family. After looking over his papers, she
agreed with the family that declining the operation would be
consistent with Philip’s wishes. Then she referred them to the
hospital’s new Palliative Care Consultation Service.

End Game

Like most Americans, the Levers had never heard of palliative
care until the day they gathered in the ICU’s small conference room
to meet two members of the Palliative Care Consultation Service —
Internist Michael Kearney and Nurse Coordinator Debra Rodgers.
Palliative care, designed to lessen suffering, is usually practiced
when a patient is terminally ill or near death. Here in America,
where the dying are often passed off to nurses so doctors can focus
on savable patients, it’s considered a new approach; in Europe it’s
been a standard practice for decades.

In the meeting room, where finite questions of life are
discussed and decided, it’s all business. No serene landscapes hang
on the wall; there’s only a large window looking onto the crowded
corridor.

Kearney, an Irishman with a lilting brogue and an extremely
gentle manner, has had 25 years of experience in end-of-life care.
He explained in direct, laymen’s terms what the young surgeon
wanted to do, as well as its possible benefits and risks. Now
clearly understanding the implications of Philip Lever’s broken
neck, dangerously low blood pressure, unexplained internal
bleeding, and physical pain, each family member grappled with the
appalling lack of alternatives. One by one, they shared their sense
of what Philip would want.

“Everything just became very gentle and very clear, like snow
falling,” Marian recalled. “We understood our choices and they were
going to make sure our wishes — whatever they were — were
honored.”

In their grief and exhaustion, the family searched for a way to
justify the operation, but couldn’t find one, ultimately uniting
around the shared decision against it. Instead, the palliative care
unit would limit his treatment to pain relief and comfort measures.
The family cried and embraced each other.

Kearney went to Philip’s bedside and explained that he was going
to be moved to another room. “He touched him lovingly and spoke to
him with the utmost respect,” recalled Marian. “When my mother saw
that, she knew something honorable was going on, not
catastrophic.”

As night fell, intensive care nurses removed Mr. Lever’s feeding
tube and unhooked his monitor so orderlies could wheel him to a
room on the fourth floor. Over the next three days, the family
remained close — watching, waiting, appreciating every minute he
was still with them. The nurses cared for him with a sensitivity
such that the family now calls that section of the hospital “a
place where only angels reside.”

Marian spent the next two nights sleeping in a chair by her
father’s bed. In the semi-darkness, he would travel back in time,
remembering his mother, a singer who brought the young Philip along
on the ocean liners where she performed in first-class lounges. “He
thought she was the most beautiful woman with the most beautiful
voice. I learned so much about him.”

In those last days, his lucidity would occasionally return and
he would suddenly be alert, cracking jokes and flirting with the
nurses. “He was a gallant flirt to the end,” Marian said.

Then one morning, Marian noticed the quality of her father’s
breathing had changed, signaling the end was close. The family
petitioned to have his “birdcage” removed because he pulled at it
every time he awoke. The medical staff initially resisted, but when
a palliative care physician intervened, it came off. In his last
hours, the nurses gently bathed him, washed his hair, and removed
his stitches. “He looked like my father again,” Marian said.

For the Levers, that Philip’s life could end peacefully, with
minimal pain and in the midst of family love, was an incalculable
gift.

The Benefits

As American medicine continues to surpass itself in feats of
astonishing technology and heroism, palliative care, a completely
non-technological, person-centered specialty, seeking only to
alleviate physical and emotional suffering, is also growing. Young
medical students are flocking to it, according to the Center to
Advance Palliative Care (CAPC), seeing in it the seeds of their
original impulse to heal, the chance to reclaim the humanity of
medicine.

Like so many of the palliative care programs springing up around
the country, the goal of Cottage’s service is to help seriously ill
and dying patients, and their families, manage the enormous
physical, emotional, and logistical challenges that come at the ebb
of life. It’s a consultation service. None of its staff takes over
patients’ care. Instead, they listen, coordinate, and refer. And
they make sure patients’ desires are carried out in a kinetic
hospital where shifts change every 12 hours.

“Sometimes we’re called in for symptom management — pain,
nausea, shortness of breath,” said nurse Rodgers. “Sometimes we’re
called because the family needs help sorting out options. But we
never tell a patient or a family member what we think they should
do.”

The idea to bring palliative care to Cottage was conceived by
its 2003 Medical Advisory Panel: 15 staff physicians were asked to
brainstorm ideas for new programs to boost public health. Internist
Dennis Baker, a Sansum-Santa Barbara Medical Foundation Clinic AIDS
specialist for over a decade, was someone who understood the
significance of end-of-life care. From the very first meeting, he
campaigned for a palliative care service. He learned in his work
with AIDS patients that hospital deaths can be the most painful and
isolating — not because doctors don’t care, he said, but because
making people well is their strength and comfort zone.

Persuading the panel, and ultimately Cottage Health System, was
easy. The nonprofit’s board of directors approved the idea a month
after receiving the proposal.

In starting a Palliative Care Consultation Service, Cottage is
responding to a subtle shift in Americans’ attitude toward death.
Surveys show patients and families have a newfound interest in the
way they and their loved ones leave the earth. Some experts say
it’s the baby boomers’ influence; having witnessed their parents
die in pain, they want something different for themselves. Others,
like Baker, suggest it’s a backlash against the American love of
technology and their urge to cure no matter how frail the patient
or hopeless the disease.

A 2003 study in the Annals of Internal Medicine found
that 70 percent of overall healthcare costs in America paid for the
care of the population’s sickest 10 percent. Of the $242 billion
Medicare spent in 2001, $24 billion covered care for patients in
their last two months of their lives; palliative care also happens
to reduce costs.

Mount Sinai Hospital in Manhattan reports 25 percent of American
hospitals now have some palliative care services; that’s a 98
percent increase since the year 2000. Perhaps more telling is that
the majority of medical schools now require courses in the
specialty.

Since Santa Barbara’s own service began taking referrals last
September, it’s assisted 300 patients and their families — far more
than planners expected. From a quiet station on the fourth floor
north, the team’s five staff members fan out across the hospital,
talking to patients, families, and medical staff.

“Our task is to keep people from suffering unnecessarily,” said
Baker, who, in addition to having a private practice, is now one of
the service’s two medical directors. “Pain alleviation isn’t always
the first thing that’s paid attention to by physicians.”

Tianna Swede, the team’s social worker, recalled a patient
hospitalized last fall with a terminal illness — a man who’d spent
his entire life in business. Stopping by his room, Swede found him
in the throes of a life review — and not excessively happy with the
results. She sat with him for two-and-a-half hours as he looked
back and wept.

Internist Michael Bordofsky, medical director at Visiting Nurse
and Hospice Care of Santa Barbara, set up the service in 2004. The
program was formed and funded by three groups: Cottage Health
System, Bordofsky’s group, and Hospice Care of Santa Barbara, with
each nonprofit paying the salary and benefits of one or more of the
five positions. For the smallest nonprofit — Hospice of Santa
Barbara — this was a formidable task. To subsidize Palliative Nurse
Susan Gibson, RN, and Chaplain Mark Gardner, it meant adding
$100,000 to their budget in the mid-fiscal year. But when its
director, Gail Rink, heard about the patients and families being
served, and their circumstances, she said, “I know these are people
who would have fallen through the cracks at discharge.”

Comfort Caring

It was dumb luck that one of the world’s foremost specialists in
palliative medicine moved here from Dublin in 2002 — before any
discussion of the program had been broached. Kearney was running
the Palliative Care Consultation Service at Dublin’s St. Thomas’
Hospital when a conference at Pacifica Graduate Institute brought
him to Santa Barbara. He didn’t want to leave but had to complete
an Internal Medicine residency program if he wanted to resume his
medical practice in the States. So in September 2004 — as its
Palliative Care Service was about to begin — Kearney enrolled in
Cottage’s Internal Medicine residency program.

Kearney, who’s published two books on end-of-life care,
describes the time preceding death as precious, a time of “great
potential for healing.” Not in the sense of actually recovering,
but in the sense of becoming more whole, more fully alive. He first
felt a calling to this field when he was a medical student. During
morning rounds with his classmates, he accompanied the Attending
Physician to each hospital bed, listening to the discussion of
individual patients’ condition and treatment. As they approached
the vicinity of an elderly, blind man’s bed — a man dying of an
abdominal disorder — Kearney noticed this patient sit himself up
and prepare to be “discussed.” What happened next was a turning
point for Kearney.

“As we approached his bed, the attending [physician] realized
who was next and just mumbled something and walked around the bed
and on to the next patient. And this guy was just kind of
waiting.”

Later, Kearney went back to speak with him and found he was
devastated. “It made me realize, people like this just don’t have a
place in the system … he was dying.”

Kearney went on to train with Dame Cicely Saunders at St.
Christopher’s Hospice in London. Saunders is considered the founder
of the modern hospice movement, and St. Christopher’s the place she
practiced her innovative approach to pain relief. Today, Kearney
spends every afternoon working with Cottage’s Palliative Care
Consultation Service.

For years, doctors and nurses have lamented strict Medicare
regulations that deny hospice services to any patient that isn’t
within six months of death. Meaning, to get the emotional and
family support and pain relief that are the cornerstone of hospice
care, patients must give up all claims to curative treatment — they
must relinquish their hope. Now, with palliative care at the
hospital, these treatments and benefits are available to patients
who’ve just been diagnosed with a serious illness, who may have
years of life ahead of them.

Studies show Americans with advanced illness are almost always
under-treated for pain and that many suffer unnecessarily painful
deaths. Michael Bordofsky, who is now, along with Baker, medical
director of the Palliative Care Consultation Service, said some
patients refuse to discuss their pain with their doctor, worried
they’ll look like complainers, become addicted, or distract him or
her from the task of curing them. But also, some doctors worry that
government regulators will knock on their door someday and accuse
them of over-medicating, so they err on the conservative side,
Bordofsky said.

Late last December, as rain pounded city sidewalks and residents
shopped for the holidays with increasing urgency and focus, a
physically slight, brown-eyed homeless woman, her face weathered
beyond her 57 years, collapsed downtown. Her name was Linda. An
ambulance delivered her to the Emergency Room where she proceeded
to alienate almost everyone she encountered. Emergency staff
managed an examination and found that she had emphysema and
end-stage lung cancer; the best they could offer was a comfortable
death.

Palliative Care Chaplain Mark Gardner became aware of Linda’s
circumstances — that she’d refused assistance with breathing and
nutrition, was rebuffing inquiries into her family relationships,
and that she’d lived most of her life on the street.

Approaching her bed, Gardner gently asked if she’d allow him to
sit with her in her room. She nodded. So, for the next hour and a
half, Gardner sat silently with Linda, wondering at times what he
was accomplishing, but nevertheless persevering with his practice
of a new meditation he learned called “loving kindness.”

“After I was finished I went to her bed and said, ‘It’s been an
honor to sit with you.’” This time her nod had a different quality,
he said. More serene. And her eyes opened slightly. That afternoon,
a volunteer from Hospice of Santa Barbara’s Compassionate Care
program continued Gardner’s work of simply sitting with Linda. When
he got up to leave, she thanked him.

Two days later, Linda was moved to the oncology floor where she
became less and less responsive, her breathing more superficial.
Gardner and Rodgers continued to check in and sit with her. When
her breathing changed again and they knew she was about to die,
they kept a vigil, gently assuring her they wouldn’t leave her,
that she was safe.

After she died, Rodgers and another oncology nurse bathed
Linda’s body, accompanied by the music of a harpist, who happened
to be at the hospital for a holiday event.

They prevented Linda’s death from being as unfortunate as her
life.

“It was a matter of humanizing what can be a dehumanizing
experience,” said Gardner. “She was more than just a weathered old
woman.”