Recounting her father's struggle with cancer was difficult for the young woman, even several years after his death. He'd endured first surgery and then chemotherapy and radiation, she told me, and the cancer had gone into remission. He was thrilled, but the aggressive treatment left him with chronic, debilitating pain. Once active, he struggled to get around in his own home.
"It wasn't the cancer that got him," the daughter said. "It was the pain."
Her father had turned to all of his doctors, with little relief. His surgeon had looked at his operative wounds, pronounced them well healed, then stated that they were in no way responsible for his disability. Both his cancer doctor and his radiation doctor congratulated him on being in remission but then declined to prescribe pain medications since they were no longer treating him and couldn't provide ongoing follow-up and dosing guidance. His primary care doctor listened intently to his descriptions of his limitations, but then prescribed only small amounts of pain meds that offered fleeting relief at best.
"I'll never forget what my father had to go through," she said, weeping. "I wouldn't wish this on anyone."
I wish I could have reassured her that her father's case was unusual. Sadly, according to a new study in The Journal of Clinical Oncology, a significant percentage of cancer patients continue to suffer from pain as her father did.
Researchers who surveyed more than 3,000 cancer patients found that nearly two-thirds said they were in pain or receiving pain medications. Roughly a third felt they needed more painkillers to fully treat their symptoms.
A month after the patients saw their oncologists, the researchers again asked the patients about their pain. Instead of showing improvement, the percentage of patients who continued to be in pain remained unchanged.
Their pain, in other words, had not been treated.
The findings are a sobering echo of research from nearly two decades ago that revealed that more than 40 percent of cancer patients did not receive adequate treatment for their pain. While patients were reluctant to ask for relief or to take prescribed pain medications, the researchers found that physicians were just as unwilling to prescribe the needed medications. Nearly a third of cancer specialists waited until the patient was only months away from death before offering maximum pain control.
These results were eye-opening for the oncology community and helped fuel a firestorm of initiatives in the late 1990s and early 2000s aimed at improving how doctors address pain in general. State medical boards began to mandate that all doctors take pain management courses before renewing their licenses to practice. In a move presaging today's checklists, pain was declared a patient's "fifth vital sign," a body function to be assessed after temperature, heart rate, respiration rate and blood pressure. And hospital systems, regulatory agencies and entire medical specialty organizations, confident that better education and more explicit efforts were all that was needed, heralded the various proposals as the new norm.
Unfortunately, that new norm turned out to be not so different from the old.
"It was a 'Groundhog Day' moment, certainly not a feel-good one," said Dr. Michael J. Fisch, lead author of the recent study and professor and chairman of the department of general oncology at the University of Texas M.D. Anderson Cancer Center. While there had been a slight improvement in the number of patients whose pain was controlled, nearly a third of patients were still inadequately treated.
Some of the disappointing results may have been owed to physician and patient fears of narcotic addiction or concerns over side effects. But the main reason, Dr. Fisch and his colleagues believe, is that early initiatives simply underestimated the complexity of good pain management.
To optimize pain treatment, physicians need to carefully navigate the exam-room interaction, ask open-ended questions and empathize with patients who, in some of the most challenging cases, come from backgrounds very different from their own and describe pain and its effects on their lives in unique ways. A patient from China, for example, might describe her leg as feeling "sour" rather than painful. A man from a community that values stoicism might mention that he is now confined to his bedroom but not volunteer a description of sharp, 8-out-of-10 knifelike pain that he now suffers from intermittently.
Not surprisingly, minority patients in the study tended to have more difficulty getting adequate pain control.
Cancer patients who were living with the disease were also less likely to have their pain adequately controlled, compared with others. The current reimbursement insurance system offers little incentive to any single provider to take on responsibility for all of their complex needs. Oncologists may no longer be interested in seeing or caring for them because they have finished their cancer treatment and are doing relatively "well." Primary care providers may not be comfortable taking on the intricate follow-up schedules required to detect recurrent cancer.
And many doctors may simply hesitate to take on the heavy responsibility of monitoring a patient's ongoing narcotic use, the complicated challenge of figuring out whether the dosage is sufficient while worrying about the potentially lethal complications of prescribing too much, or creating an opportunity for abuse.
"A doctor can't help but wonder, 'Am I going to be the one responsible for refilling these prescriptions until the end of this patient's life?'" Dr. Fisch said.
While this study offers important follow-up data to work conducted two decades earlier, it also represents a growing interest among researchers in the symptoms of cancer, particularly for the growing number of people who are living longer than patients from even a decade ago. Thanks to advances in cancer treatment, more than half of all cancer patients now live five years or more past their initial cancer diagnosis. "We need to be better prepared for this best-case scenario," Dr. Fisch said, because it's one that can include not only more years of life but also persistent fatigue, arthritis, hot flashes, depression, sleep problems and chronic pain.
In the case of chronic pain, one thing is clear: Adding assessments to a checklist of vital signs and mandating more physician education aren't enough.
"Pain is all about the doctor-patient relationship and taking the whole person into account," Dr. Fisch said. "Those things are not quick fixes."