No More Pain

Palliative Care Doctors Help Patients Die Comfortably

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.”

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