By Susan L. Young
Illustration by Brian Cronin
Sometimes the pain is a whole body ache, as if all the bones in his body are broken. Other times, it feels like a knife is stabbing him under his joints, or, on this day, right in the groin.
Last holiday season, while standing and chatting with a friend at work in a Silicon Valley car-repair shop, Daniel Shaine was struck with a pain so intense that his legs buckled. “It doesn’t happen that way often,” says Shaine, a 67-year-old Campbell, Calif., resident. But around that time, such attacks started coming more frequently.
“The pain is there for a reason,” he says. “The doctors know there is something wrong and they are trying to discover how much this cancer has spread.”
The semi-retired automobile service writer has dealt with his cancer pain for more than a decade now, but only for the last year or so has he been getting help from a branch of medicine specifically dedicated to easing the symptoms of complex illnesses such as pain.
That branch — palliative care — is a relatively new discipline that helps seriously ill patients and their families maintain the best quality of life possible, and, as one study has recently shown, can even lengthen their lives. But prejudices and misconceptions about palliative care’s role in medicine stop many doctors from telling patients it’s an option.
It took a long time for palliative care to come to Shaine’s aid. His journey with cancer began in the wintry months of 2001 with a seemingly harmless act: picking up something heavy at work. “I felt something move in my lower back. The cancer was already there, it just manifested itself as a pulled muscle,” he says.
His eventual diagnosis was stage-4 prostate cancer, which had metastasized to his back and attacked his spine. His situation seemed so dire he received his last rites. But that proved too soon for the deeply spiritual Shaine. Half a year later, the test results that once suggested furious growth of his prostate cancer had dropped to near normal levels. His doctor could barely believe it.
“I had an appointment to see my urologist and when he walked in the room, he started to shake his head,” remembers Shaine:
“You are a remarkable man, Mr. Shaine,” said his doctor. “Do you go to work every day?”
“I pray for strength and courage to do that,” Shaine responded. “We had a rough time last summer, didn’t we, doc?” he said, not really needing an answer.
Not that Shaine got off easy. The cancer took five of his vertebrae and 6 inches off his height. Fortunately, his spinal cord was not damaged, so Shaine kept his mobility, his work life, his social life. But he could not escape the pain.
“The pain would explode and then tentacle out, mostly across my back,” says Shaine. “It was if someone took a knife and just twisted it in.” Although he has dealt with advanced cancer for nearly a decade, Shaine, a four-year veteran of the Navy, did not work with a palliative care team until after he had switched from a Bay Area community hospital to the Veterans Affairs Palo Alto Health Care System in 2009.
As a team, palliative care physicians, nurses and social workers help patients with any serious illness manage such symptoms as pain, nausea and sleeplessness by recommending additional medications or suggesting alternate therapies. They help families cope with the stress and fear of disease, guide them through the maze of medical care, and have important conversations about a patient’s goals for living with their disease and for their last days.
Although all Veterans Affairs medical centers provide palliative care services, not all offer outpatient clinics for patients like Shaine. In fact, most medical centers offering palliative care services assist only inpatients, those admitted to stay at least one night. That leaves many cancer patients without access to palliative care, as the majority of cancer care is provided in the outpatient setting.
Inpatient palliative care services aren’t a guarantee either. In 2010, 63 percent of hospitals with 50 beds or more offered palliative care services, according to a study headed by Sean Morrison, MD, director of the National Palliative Care Research Center and professor of palliative care at the Mount Sinai School of Medicine in New York. However, the trend across the country is moving upward. In 2000, only 25 percent of hospitals with at least 50 beds had offered the care.
“We’ve seen really dramatic growth,” says Morrison, who notes that in the mid-1990s, less than 5 percent of hospitals offered the team-based approach to improving quality of life. Stanford Hospital has offered inpatient palliative care services since 2007.
Even within existing palliative care units, more specialists are needed. In December 2010, the American Academy of Hospice and Palliative Medicine identified 4,400 hospice and palliative care physicians with either board certification or membership in the AAHPM in the United States. Most of these physicians, however, practice palliative medicine part time. Between 2,700 and 6,000 specialists are needed to fully staff the current hospital-based palliative care programs, the AAHPM estimates.
“The average person with cancer suffers from untreated and unnecessary pain and other symptoms,” says Morrison. “Palliative care teams do better at managing pain and other symptoms than usual care, they provide family support and help assure safe discharges from the hospital.”
And yet, patients sometimes aren’t referred until very late in their disease, even though they could benefit from earlier palliative care, says Morrison.
A historical association with hospice and end-of-life care deters some doctors from introducing patients to palliative care teams. Palliative care grew from the modern hospice movement, which was founded in the United Kingdom in the late 1960s to provide specialized care for the seriously ill and dying. Although palliative care can help patients with many years ahead of them, some doctors assume these specialists work only with dying patients. Others are afraid their patients will think they’re giving up on them, either because of palliative care’s connection with hospice or the way some oncologists use it to mean “non-curative,” as in “palliative chemotherapy,” which doesn’t cure a patient of cancer but rather reduces cancer symptoms, usually by shrinking the tumors.
“While palliative care is not limited to issues surrounding the last stage of illness or end of life, that does reflect where providers currently view palliative care fitting in,” says Stephanie Harman, MD, clinical assistant professor of medicine and director of Stanford Hospital’s inpatient palliative care program. “It has been a limited view.”
The concern over the word “palliative” may exist more in the minds of providers than of patients. Public opinion research published in 2011 by the Center to Advance Palliative Care interviewed laymen and physicians alike and found that many health-care professionals frame the specialty as end-of-life care. The study concluded that physician attitudes hinder the field’s progress.
Conversely, the report also found that most consumers aren’t familiar with the term. But when they learn what palliative care teams can do, they want the service to be available for those who need it. “An enormous percentage of people, once they understood what it is, wanted it,” says Lisa Morgan, communications director for CAPC. The study found that the best way to communicate what palliative care does is to emphasize how it benefits patients and the relief and support it provides.
Shaine would recommend palliative care for anyone experiencing pain.
“The people I am working with are not pill pushers; they are trying to understand the best way to give me good quality of care,” says Shaine. “I have always been impressed with how much they listen to me and how they give me feedback to show the best procedure for keeping the pain under control.”
Palliative care isn’t meant to take the place of oncologists or other physicians but rather to support their efforts in treating patients with serious illnesses like congestive heart failure, lung disease or cancer. While oncologists and others manage symptoms and the side effects of treatments as best as possible, sometimes the issues become complicated.
“For certain patients who have difficult-to-treat symptoms or issues like pain, constipation, stress or depression — issues that the primary provider is having difficulty dealing with — it may make sense to refer to a palliative care specialist,” says Kavitha Ramchandran, MD, clinical assistant professor of medicine at Stanford.
“In the same way that endocrinologists get more training in diabetes and hypothyroidism, we get more training to help deal with difficult symptoms,” says Ramchandran, who is both a palliative care specialist and an oncologist.
Likewise, technological breakthroughs happen in symptom management just as they do in tumor treatments and cancer prevention. “Oncologists are always reading up on the newest therapies and understandings of the mechanisms of deranged tumor cells,” says James Hallenbeck, MD, associate professor of medicine and associate chief of staff for extended care at the VA-Palo Alto. “What I’m reading about are the new understandings of shortness of breath, itching, depression, weakness and fatigue, or nausea and pain,” says Hallenbeck, who is also a member of the Stanford Cancer Institute.
Pain is a mysterious illness that eats up as much as $635 billion in the United States each year for treatment and lost productivity, according to a recent report from the Institute of Medicine. For cancer, pain is a difficult symptom to manage and is rarely treated by simply setting up a morphine drip. In Shaine’s case, the typical treatment for bone pain could exacerbate another problem — previous medication damaged his jawbone, a condition known as osteonecrosis. So his palliative care specialist, VJ Periyakoil, MD, the director of Stanford Palliative Care Education and Training and a clinical associate professor of medicine at Stanford, has been working with Shaine to find an alternative.
For now, he takes pain medication twice a day, but sometimes he needs something stronger. The trick is, he doesn’t want to be, as he says, “dopey.” “As I have told them, I don’t want to be a zombie,” says Shaine. “That’s not going to help anybody.”
“Our palliative care recommendation was to order a bone scan and refer him to nuclear medicine for treatment with samarium-153, a bone-targeting radioisotope, to relieve bone pain,” says Periyakoil. Results in hand, the next step for Shaine and his palliative care team is to discuss how samarium-153 treatment would affect his life.
In addition to seeing patients through the VA-Palo Alto, Periyakoil runs Stanford’s Hospice & Palliative Medicine fellowship program.
“What my fellows and I care about most is what treatments can we provide to these people to promote not just quantity of life but also concurrently quality of life,” says Periyakoil.
And evidence suggests palliative care does both.
A 2010 study conducted at the Massachusetts General Hospital in Boston showed that palliative care increased both the physical and psychological well-being of stage-4 lung cancer patients. Patients who saw a palliative care team from the moment of diagnosis reported less depression and received less aggressive end-of-life care yet lived almost three months longer than advanced lung cancer patients who did not.
“It showed that patients who receive palliative care alongside normal cancer care live longer.”
“That New England Journal of Medicine study caused a sensation in the cancer world because it showed that patients who receive palliative care alongside normal cancer care live longer. In fact, the impact of palliative care on survival was similar to a well-known expensive chemotherapy drug called bevacizumab (trade name, Avastin) in the same patient population,” says Ramchandran. She hopes that palliative care teams can continue to chip away at the false impressions of their field by having an effective presence in clinics. To that end, Ramchandran is spearheading new programs for outpatient palliative care services at Stanford Cancer Institute.
Currently, Ramchandran and her team are seeing patients as needed in the outpatient oncology setting. “If a patient has refractory pain or depression, for instance, or wants to talk about goals of care, we can meet with them,” says Ramchandran. To explore another method for connecting outpatients with palliative care, the new Stanford Women’s Cancer Center will soon hold a once-a-week clinic in which patients, with their oncologist’s referral, will make separate appointments to work with palliative care.
“One of the things we’ve been doing at Stanford is being as available as possible,” says Ramchandran. “Once a provider has watched us help one patient, they’ll refer another one. They just need to see it in order to believe it.”
Beyond extending and improving lives, palliative care offers a boost to bottom lines. “When you provide palliative care, you increase the efficiency of health care and you reduce health-care costs,” says Mount Sinai’s Morrison. His studies showed that palliative care programs significantly reduced hospital costs for seriously ill patients while improving clinical quality, patient well-being and family satisfaction.
“Palliative care teams sit with patients and families to understand what their goals are, and then they match their treatments to their goals. Then what you really get is true, patient-centered care in the setting of serious illness,” says Morrison.
For now, the demand for palliative care exceeds the supply of specialists. “Because the field is so new, many of our faculty never had any palliative care training,” says Periyakoil. “There are too many cancer patients suffering from many distressing symptoms and too few palliative care experts. We still need to significantly bolster our efforts to train our community in order to better alleviate patient suffering,” she says.
“I understand one of these days, this cancer is going to catch up with me,” Shaine says. “But as long as I am talking with my doctors and say my prayers every day, I am comfortable. Through prayer and people giving me confidence, like the palliative care people, I have no fear.”