Cancer Doesn't Have to Hurt
Interview with Carol P. Curtiss, RN, MSN
Carol P. Curtiss received her Diploma in Nursing from the Massachusetts General Hospital School of Nursing in Boston, MA, her Bachelor of Science in Human Services from the America International College in Springfield MA and her Master of Science in Nursing with a clinical specialty in cancer nursing from Yale University in New Haven, CT. She received the 1999 Distinguished Service Award from the Oncology Nursing Society (ONS) and is a charter member of the Yale University chapter of Sigma Theta Tau, which is an international nursing honor society. She is a nationally accomplished speaker and prolific author with numerous personal and professional achievements and awards. Her most recent book, Cancer Doesn't Have to Hurt, is available through the pain.com bookstore. She currently resides in Greenfield, MA where she is president of Curtiss Consulting and an adjunct faculty member of the University of Massachusetts School of Nursing in Amherst, MA.
Pain.com: I like the title of your latest book, Cancer Doesn't Have to Hurt; how did you choose that title?
Ms. Curtiss: One of the most common concerns of people with cancer, their families, and the public is the fear of pain. Many people erroneously believe that pain is an inevitable part of having cancer. Once, cancer and pain often went hand-in-hand. Now health care providers have the knowledge, skills, medicines, and when necessary, the technology, to manage most kinds of pain, including nearly all cancer pain. My co-author and I have been nurses for nearly 60 years combined, specializing in cancer care for most of this time. We wanted the title of the book to begin educating the public at first glance that pain does not have to be a part of having cancer. We also wanted to help individuals understand that most pain from cancer and cancer therapy is unnecessary. Knowledge is power, and we wanted people facing cancer to have the power to get pain under control and to advocate for improved pain relief. People dealing with cancer have many obstacles to face. Pain should not be one of them.
Pain.com: How many types of cancer pain have been identified? Are there other causes of pain?
Ms. Curtiss: It's important to note that not everyone with cancer has pain. But for those who do, pain is categorized in several different ways. First, we differentiate acute pain from chronic pain. Pain due to cancer may be acute or chronic, or a combination of both. Acute pain is short lasting and goes away on its own as healing occurs. It serves as a warning that something is wrong. Most physicians and nurses learned about pain using an acute pain model. With acute pain, the person often moans, groans, grimaces, protects specific muscle groups, and a person's vital signs change. These behaviors that doctors and nurses are taught to rely on to evaluate pain are rare with chronic pain. Using vital signs to evaluate chronic pain is inappropriate because it's unusual to observe vital signs changes in a person with persistent pain, even when pain is excruciating. Physiologically, the sympathetic nervous system response to pain causes vital signs changes. With acute pain, the sympathetic nervous system goes into action to warn the person about the presence of pain. That warning system causes vital signs to change. When pain persists and transitions to chronic pain, the sympathetic nervous system adapts and no longer responds to pain signals with vital signs changes. The person with unrelieved persistent pain of any sort may have a flat mask-like expression on his/her face and demonstrate perfectly normal vital signs. Chronic pain cannot be appropriately evaluated using acute pain parameters. Chronic pain is defined as pain that lasts for more than one month and does not go away on its own. It may be constant or intermittent and serves no useful purpose. Cancer pain is one type of chronic pain. Over time, the body adapts to chronic pain and while pain intensity may still be severe, the body does not show significant observable signs that pain exists. For example, blood pressure, pulse and respiratory rate may increase or decrease with acute pain. These changes are rarely seen with chronic pain, even when pain intensity is severe. People with cancer may experience underlying chronic pain and also experience acute pain episodes. Vigilant assessment is key to effective pain control. Pain in people with cancer can also be categorized into two major groups - nociceptive pain and neuropathic pain. Nociceptive pain is caused by injury or irritation to bones, muscles, tissue or organs within the body. Neuropathic pain is caused by injury or irritation to nerves or to the central nervous system. Nociceptive pain (also differentiated into visceral and somatic pain) usually responds to the use of non-opioids and opioids, adjusted to dose limits for non-opioids and titrated to individual comfort for opioids. Neuropathic pain may respond to these medications too, but some types of neuropathic pain may require the addition of other medications like tricyclic antidepressants or anticonvulsants. The causes of pain also vary. If possible, removing the cause of pain is the best way to treat any pain, but sometimes we are unable to determine the exact cause of pain. If pain is present, treatment is needed, whether or not we can find the cause. For example, pain from bone metastases may be present for 6 months or more before metastases will show on a regular x-ray. Yet, pain is the presenting symptom for most bone lesions and must be treated aggressively, even when the source is unclear. People with cancer may have pain due to cancer itself, from the therapies used to treat cancer, or pain may occur from other unrelated sources, like pain from immobility, from arthritis or other sources. A complete assessment and physical examination can help determine the type of pain and a treatment plan that works.
Pain.com: Are there special descriptions or scales for cancer pain?
Ms. Curtiss: The new JCAHO standards require routine screening for pain and assessment of those individuals who report pain. Screening for pain, like screening for other vital signs, is usually accomplished by using some type of rating scale. There are many published rating scales, like the 0-10 scale (with 0 being no pain and 10 being the worse imaginable) or the faces scale, that have been shown to be both reliable and valid. Keep in mind that rating scales are uni-dimensional and only tell us about the presence of pain and pain intensity. Complete assessment must follow any report of pain. Rating scales are fairly new to most patients and to the public. In order to comply with the new JCAHO standards, and for good pain care, we must teach people how to use rating scales to report both pain and pain relief. I usually introduce the use of rating scales in this way:
"I can't see your pain or know exactly how you feel. I don't have a test to show me how much pain you're having. We use a rating scale to try to "see" your pain and if what we're doing for the pain makes a difference. There are no right or wrong answers and I don't compare your rating scale to anyone else's. I use the scale to see if we are making progress in relieving your pain. Let's look at the scale we use most often."
Then, re-explain the purpose of the scale, demonstrate its use, have the person use it to rate his/her pain, and reinforce the importance of working together to relieve pain. Once the scale is learned, individuals easily report changes in pain intensity. Record and track pain ratings in the same way that we track other vital signs and use the ratings to communicate assessment information with other team members. Identify a level on the rating scale that requires intervention. The purpose of using the scale is to do something about unrelieved pain and to observe changes based on the intervention.
Pain.com: What's the best way to evaluate pain?
Ms. Curtiss: The best way to learn about pain of any sort is to listen to the person with pain. In fact, every published pain management standard and guideline in the United States (and international publications as well) tell us that the most important piece of assessment information is what the person with pain tells us about pain and pain relief. In others words, the person with pain is the expert about his or her own pain. An important key to assessing pain and designing a plan that works is to listen to the person with pain. Health providers have a responsibility to accept and respect the person's report of pain and to try to design a plan that offers relief. While self-report is the place to begin, a comprehensive assessment is the next step in someone who reports pain. Like other clinical problems, a complete history, physical examination and review of diagnostic tests are essential. Assessment includes specific information about the pain itself, pain relief, the effects of pain on the person, presence or absence of side effects, and any other problems the person may currently experience. Re-assessment is the only way to measure success! There are numerous published pain assessment tools available. Inquiry about the pain itself includes information such as:
Pain:
Ask about onset, location, duration, quality, severity, and intensity
Ask about all of the places that hurt and use words in addition to pain.
Most people reserve the word "pain" for a sensation that's severe and use
other words like "discomfort", "ache" or "hurt" to describe everything else.
Identifying and treating mild to moderate pain early is easier than waiting
until pain is severe.
Is the pain constant or intermittent? Is this new pain? What makes it better?
Worse? What have you tried for relief? What has worked? Use a rating scale to
rate your pain now. Rate the best the pain has been over the last 24 hours.
Rate the worse it's been over the last 24 hours. List medications and the exact
doses and frequencies used over the last 24 hours.
Relief
How much relief do you have? How long does it last? Does all of the pain go
away with what we're doing? Does the pain come back before the next dose of
medication? Using the same rating scale, rate your relief. Using the same rating
scale, ask the individual what level of relief would be acceptable - this is
the person's goal for relief.
Effect of pain on the person
How does pain affect the person? What does pain interfere with? If possible,
watch the person "in action" rather than sitting or lying in bed. Ask about
sleep, appetite, mood, energy, mobility, work, socialization or play. Ask about
the presence or absence of side effects and whether or not the person has concerns
about the pain or the pain plan. Complete a thorough physical exam.
Record pain ratings in an easily accessible place and track pain ratings over
time to measure progress and the effectiveness of interventions. If an intervention
does not reduce pain after an appropriate trial, eliminate the intervention and
try others. The purpose of rating scales is to provide helpful clinical information
about pain and pain relief for re-assessment and follow-up that results in improved
pain management.
Pain.com: Can you describe how medicines are used to treat cancer pain?
Ms. Curtiss: Cancer pain is treated just like other kinds of pain. Medicines are the mainstay of cancer pain therapy, especially when pain is severe. For pain that is mild, non-opioids like acetaminophen or non-steroidal anti-inflammatory drugs (NSAIDs) are the first choice. Scheduling them around the clock rather than PRN provides a steady serum level and maintenance levels of analgesia to treat persistent pain and avoids the peaks and troughs of intermittent dosing. These medications have ceilings on the amount of medication that can be administered. Dosing above the recommended levels of non-opioids does not provide additional analgesia, but carries a significant risk of side effects. Risks include G.I. irritation and spontaneous bleeding, and kidney and liver damage. If pain persists or is moderate, add an opioid at starting doses, scheduled around the clock, and consider continuing the non-opioid as well. Non-opioids work peripherally and opioids work centrally, providing improved analgesia when used together. If pain is severe or persists with previous interventions, titrate the opioid to comfort levels. Unlike non-opioids, opioids may be increased as much as necessary, based on individual response. There is no dose limit for opioids and they are safe to administer over time. Around the clock scheduling is key to manage persistent pain and to maintain relief with the fewest side effects. When using around the clock long acting analgesics, PRN doses of analgesics must be prescribed to treat pain that occurs between scheduled doses of analgesics. Whenever possible, keep the plan simple and order the same medication in both long acting and short acting forms. Adjust the dose based on 24-hour requirements for each individual. The overall goal is to achieve maximum pain relief with the fewest side effects in a plan that's simple to follow. At initiation of therapy, side effects like nausea and vomiting and sedation should be aggressively managed and prevented. Once initial dose titration is complete - usually within 5-7 days at most, tolerance to these side effects occurs and rarely poses additional problems. Constipation from opioid therapy, however, must be aggressively managed using a stimulant and softener, from initiation of therapy and continuing throughout therapy - tolerance does not usually occur to this opioid side effect. Doses of opioids are gradually titrated upward to achieve comfort. There is no ceiling on the amount of opioids that may be administered. Individual response to analgesics varies widely, even when pain seems similar. The only way to know how much opioid analgesic will be adequate for relief is to titrate and assess the person's response during titration. As neurologist Kathleen Foley, MD, says, "The right dose is the dose that works." If a person is taking nutrition orally, most cancer pain can be managed using the oral route as long as titration and individual responses guide dosing. When changing from one medication to another or one route to another, consult an equi-analgesic chart (published in nearly all standards and guidelines) to determine approximate equivalent doses for specific medication. Oral dosing must account for the first pass effect of analgesics through the liver. The oral dose of an opioid will ALWAYS be higher than the equivalent parenteral doses of the same medication. For example, for scheduled medications, it will take approximately 30 mg. of oral morphine or 10 mg. of parenteral morphine to relieve the same amount of pain. For hydromorphone, the conversion is 7.5 orally to 1.0-1.5 parenterally. This calculation, followed by assessment of the person's response to the dose change, are essential factors to effective pain management with medications. Neuropathic pain may respond to the strategies described above, but when neuropathic pain persists, tri-cyclic antidepressants and anticonvulsants may provide relief for some people. The trial period for these medications is 1-2 weeks. The dose required for relief, the efficacy, and duration of the efficacy vary widely from person to person. The only way to know whether an individual's pain will respond to these medications is to provide an adequate trial. Use rating scales, self-report, and changes in function, energy and mood to track the effectiveness of the pain plan.
Pain.com: Are the ways you've described to treat cancer pain only for people who are at the end of life?
Ms. Curtiss: No, the principles for managing most types of pain, whether acute pain, chronic non-cancer pain or cancer pain, are similar. This is not just an end-of-life issue. For cancer care, we use these principles to manage pain in people who are survivors as well as people at the end of life. Some people who survive cancer are left with chronic pain from the cancer or from cancer therapy. Some examples are post-mastectomy syndrome or post-thoracotomy syndrome - each causes persistent and sometimes severe chronic pain. These pain management strategies are currently used for all types of pain in people with many different types of diagnoses. Assessment is key for any kind of pain. Systematic use of medications applies to all types of pain as well. Titration of analgesics to individual response is a basic principle of good care for anyone with pain. Strong medications are safe to use over time. We know that using strong medications to manage severe pain rarely causes addiction in those without a prior history of substance disorders. Physical dependence is easily managed by gradually tapering off the dose of opioid analgesic if the source of pain is eliminated. Using analgesics appropriately for pain management is a core competency for all health providers.
Pain.com: What other ways are there to manage pain?
Ms. Curtiss: The best way to manage most types of pain is to develop a comprehensive plan that uses a variety of interventions, including non-drug therapies and medications. Heat, cold, massage, exercise, TENs, acupressure and acupuncture have all shown efficacy in some studies. The National Institutes of Health has published consensus statements addressing the effectiveness of behavioral interventions and acupuncture on pain control. We have much to learn about combining non-drug interventions with medications for optimum relief. For example, distraction is a powerful, short-term, intervention used by many people for brief periods of relief. Decreased pain perception only lasts as long as the distraction lasts and distraction activities rarely will manage severe pain alone. The person may also experience fatigue after using distraction techniques. Relaxation and imagery exercises provide stress and pain reduction and an improved sense of well-being. Examples of progressive muscle relaxation and rhythmic breathing exercises can be found in the AHCPR (now AHRQ) Cancer Pain Guideline. There are many other non-drug interventions that help relieve pain or decrease pain perception. Many individuals already know non-drug interventions as a part of their wellness activities. Strategies like meditation, hypnosis, massage and others can easily be integrated into an effective and comprehensive pain management program.
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