Congress Briefed on Need for Better Cancer Pain Management

WASHINGTON—Pain in cancer patients is woefully undermanaged because of multiple barriers from patients, physicians, and the nation’s health care system, several speakers said at a congressional briefing.

“The bottom line is that we have the drugs and the mechanisms to effectively treat the vast majority of pain. In fact, the World Health Organization says that about 95% of pain can be treated with existing modalities. The truth, however, is that about 70% of cancer patients have pain that is moderate to severe and is not treated adequately,” said Betty Ferrell, RN, PhD, a nurse research scientist at the City of Hope Cancer Center.

Bills Related to Cancer Pain

Dr. Ferrell spoke at a briefing arranged by the National Coalition for Cancer Research (NCCR) and the Oncology Nursing Society (ONS). A number of bills related to cancer pain have been introduced in the House and Senate, and Capital Hill staff dealing with health issues requested the briefing to better acquaint themselves with the issue.

According to NCCR, 89% of children with cancer suffer pain, but a recent study found that only 27% of them get treatment that alleviates their suffering.

Rep. Deborah Pryce (R-Ohio) emphasized the latter point in describing the death of her 9-year-old daughter last year from neuroblastoma.

“Much of her pain, if not all, was unnecessary,” Rep. Pryce said. “As a parent watching my child suffer, I could not understand why more could not be done at the end of her life.”

Pain may occur before, and often leads to, the diagnosis of cancer, said Robert L. DeWitty, Jr., MD, associate professor of surgery, Howard University. It accompanies treatment, but “once the treatment is over, the pain tends to go way.”

Some patients treated effectively for their cancer develop such severe pain that it keeps them from functioning, but “we can alleviate that pain, put them back to work and play, and put them back in balance,” he said. Finally, he said, terminal patients may suffer “extraordinary pain.”

Three Types of Barriers

Dr. Ferrell served as a member of a federal committee that in 1992–1994 drafted cancer pain management guidelines. “Even then we asked, if we know so much about controlling cancer pain, why are we doing so badly at it?” she said. The reasons are many, she added, but they fit into three categories:

• Patients: “Patients themselves are very reluctant to report their pain,” Dr. Ferrell said. “Everyday, I see patients who are experiencing pain, but they don’t want to admit it.”

Their reasons are numerous, she said. They may not want to distract their physician’s attention from their underlying disease; they may fear that if their pain is worsening, their disease must be worsening; or they may have concerns about not being a “good” patient.

Many patients are unwilling to take pain mediations for a variety of reasons.

“At City of Hope and elsewhere, researchers have documented that even when patients have severe pain and have medicine available, generally they are taking only about 50% of the medicine currently prescribed for them,” Dr. Ferrell said.

Many patients are fearful of side effects, of developing tolerance or becoming addicted to the drugs, or of being thought of as an addict.

“Patients and families are uniformly terrified by what will happen if the pain gets worse,” Dr. Ferrell added.

Some patients will refuse pain medication for such reasons as fear of needles, Dr. DeWitty noted. “We have lots of routes and modalities to give pain medications, all good—twice a day pills, dermal patches, and, of course, the morphine pump,” he said.

• Health care professionals: Only two medical schools in the United States have structured their programs to teach students about pain. And in a review of the 50 leading nursing textbooks, Dr. Ferrell and several of her colleagues found that only 2% of the 45,000 pages focused on any kind of end-of-life topic, including pain.

Woman Sees 20 Physicians

Dr. Ferrell described the case of a woman who saw 20 physicians before one of them took her complaints of pain seriously and diagnosed her cancer. “The reason pain is so poorly treated is that there is a huge barrier of professional knowledge,” she said.

According to a report by the Agency for Health Care Policy and Research, now known as the Agency for Health-care Research and Quality (AHRQ), Dr. Ferrell said, this knowledge gap results in poor assessment of pain by doctors and nurses.

Such lack of knowledge may also lead health care professionals to have unfounded concerns about running afoul of regulations governing controlled substances. Uninformed health care professionals may avoid prescribing appropriate opiate doses for fear of creating patient tolerance and addiction.

Addiction Concerns Unwarranted

Concerns about addicting patients while treating cancer are unwarranted, Dr. DeWitty said. “If the cancer can be cured, the treatment for pain is temporary,” he said. “For patients who are terminal, you should never think about addiction but about getting them the type of relief they need.”

• The system: Again citing the AHRQ, Dr. Ferrell said that the nation’s system of delivering health care, as it has evolved since the late 1980s, itself poses a barrier to controlling pain.

Often, Dr. Ferrell said, cancer pain treatment is given a low priority; reimbursement is inadequate; regulation of controlled substances is restrictive; and there may be problems with the availability of pain treatment or the patient’s access to it.

“I have talked to patients around the country who tell me: ‘In my managed care system, I have 10 minutes with the doctor, and in that 10 minutes, I have to cover everything.’ So pain often shifts to a lower priority,” she commented.

Dr. DeWitty noted another problem—the inability of some patients to obtain a prescribed pain medication because the pharmacy doesn’t keep it in stock.

Personal finances may also influence the use of analgesics. “Some of these medications can be expensive,” Dr. DeWitty said. “If you have to prioritize how you spend your money, sometimes you many not consider the prescription that you need to relieve your symptoms as important as other things.”