Pain is not simple at all. It is always defined by the patient, but it’s up to us to determine not only where and how it hurts, but under what circumstances it worsens, and perhaps most important, how the patient reacts to it.
—Thomas J. Smith, MD, FACP, FASCO
Learning about the particulars of each cancer patient’s pain and treating each case uniquely is the key to keeping pain manageable. That is the goal of the Duffey Pain and Palliative Care Program at The Sidney Kimmel Comprehensive Cancer Center in Baltimore. The team consists of physicians, nurse practitioners, pharmacists, social workers, and clergy, and was established in 2009.
Numerous multidisciplinary teams at medical institutions across the country work in a variety of styles with greater or lesser success. This one is highly effective and committed.
Pain is pain, and aside from differences in quality and intensity, there it is, plain and simple, begging for relief. Right?
No, said Thomas J. Smith, MD, FACP, FASCO, Harry J. Duffey Family Professor of Palliative Care and Director of Palliative Medicine, Johns Hopkins Medical Institutions. “Pain is not simple at all. It is always defined by the patient, but it’s up to us to determine not only where and how it hurts, but under what circumstances it worsens, and perhaps most important, how the patient reacts to it. How is it affecting his or her life?”
All this takes a good deal of time to sort out—time that most oncologists with a full caseload do not have.
People experience pain entirely alone. We can see some of its effects, but we cannot feel it, and the patient sitting in front of a physician is entirely different from everyone else. Nevertheless, patients can talk about their pain, and the pain clinic professionals may be the only ones who really listen. This is almost always the first step toward relief.
Pain education revolves around patients, of course, teaching them the sources of cancer pain and the best ways to control it. “But the team teaches one another,” said Dr. Smith.
This is especially true every Thursday at noon, when about 25 people in the Palliative Care Program gather to discuss patients who are newly diagnosed, or who present challenges for pain control, or about whom one of the team members has questions. The ASCO Post was recently invited to attend one of these informal meetings at Sidney Kimmel.
Time Is the Critical Factor
Oncology has gotten busier, and effective pain control takes longer than most oncologists have. “By the time you evaluate the progress of the disease and figure out a new or continuing treatment plan and decide what tests are needed, the office visit is over, and you haven’t even begun to address the patient’s pain,” said Stuart A. Grossman, MD, Professor of Oncology, Medicine, and Neurosurgery. Real conversations about pain tend to be long, and Medicare and other insurers don’t reimburse for the time.
What about the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) requirement that pain be assessed in all patients, which is commonly done using a 0–10 numeric pain rating scale? Doesn’t that establish what a patient is feeling, and isn’t it sufficient?
No, said Suzanne A. Nesbit, PharmD, CPE, Clinical Pharmacy Specialist in Pain Management and Research Associate, Department of Oncology. “Pain is more than a number on a scale, although that is a starting point. The challenge is to find out what else is going on that has an effect on the pain. That’s one of the things we can do that most oncologists can’t. We have the luxury of time, and pain control is our only function.”
Barriers to Pain Relief
As Michael J. Fisch, MD, MPH, noted in the March 1 issue of The ASCO Post (“Cancer Pain: The Humbling Reality”), about two-thirds of cancer patients have pain, and 42% of those patients do not receive adequate analgesia or have their pain addressed at all. Even after an initial pain assessment, the majority do not improve. There are many reasons for this, some obvious and some not.
Dr. Smith said that many patients hide their pain because they use it as a barometer of cancer progression—the worse the pain, the worse the disease. “But if we know or suspect this, we can educate them about why cancer hurts, what it means, and how it may or may not be related to disease progression.”
“Everyone processes pain differently,” said Catherine B. Saiki, CRNP, a nurse practitioner. Often it’s not only physical sensations; it’s general suffering, constipation and fatigue, existential suffering, worry about family, and anything else that preys on the mind and body. “We know that pain itself is an aggregate of many factors, and when we take the time to talk about it, we usually can determine the problems and find ways to alleviate them.”
Members of the team ask patients what their understanding is about the disease and the pain it causes—and they listen to the responses. They ask what bothers them most, what they believe about the future, and what they might like that future to be.
Ms. Saiki described cases of patients who are in obvious pain but insist they don’t need opiates. “They refuse to acknowledge how bad their pain is until I ask ‘if this was happening to your own child, wouldn’t you want him/her to feel better?’” “Oh, yes,” they reply. “That’s all it takes,” Ms. Saiki said.
Money is another barrier. “Not all patients have good prescription drug coverage, and many of the newest and most effective drugs are surprisingly expensive,” said Dr. Grossman. “Yes, there are many generic ones that are relatively cheap, but you can guess which ones the drug companies are flogging.”
Then there are religious issues. Some patients believe that their disease is part of God’s plan, that they were predestined to suffer, or that God wants them to suffer. (“Then why did God make poppies?” quipped a team member.) “Spiritual pain can compound physical pain, and I have seen a half-hour visit with a clergy person make all the difference in a patient’s willingness to allow us to help,” said Dr. Smith.
Patients try to hide their pain for other reasons as well: not wanting to be a bother or to seem cowardly, fear of addiction to opioids, unwillingness to be “zonked” by drugs, the vulnerability of having opioids in the house.
The reasons for poor pain control are myriad. Some are perfectly rational and some are more fanciful. But with time to sit and listen, the experience to ask the right questions, and the empathy to accept the answers, the pain team responds to each patient’s needs.
How the Team Works
The palliative care program has six inpatient beds, said Ms. Saiki. “These are for the sickest patients, who stay until their symptoms have stabilized so they can go home or to a hospice.”
“We see about five patients per clinic, three times a week,” said Dr. Nesbit. “Over the first 2 years (2009–2011), we had approximately 900 clinic visits.” Most patients are seen two or three times, usually a week apart, to get them started on effective pain control, and then on an as-needed basis.
Julie Waldfogel, PharmD, CPE, another pharmacist on the team, said that the oncologists and other clinicians at Sidney Kimmel are generally supportive of the pain program. “Referrals come primarily from medical and radiation oncologists, as well as nurses in the infusion center,” she said. There are some self-referrals, but they are rare, and the team requires that they be followed by a Hopkins
“We’ve heard often from oncologists that in their appointments with patients, they don’t have the time to get to symptom management and appreciate that we’re available to help. I think that the continued referrals we receive are proof of that,” she added. ■
Disclosure: Drs. Smith, Grossman, Nesbit, and Waldfogel, and Ms. Saiki reported no potential conflicts of interest.