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Articles  |   November 2005
Becoming an Advocate for Cancer Pain Management
Author Notes
  • Ms Bitros is a certified palliative care trainer and clinical resource coordinator at Life Choice Hospice with offices in Philadelphia, Fort Washington, and Allentown Pa. 
  • Correspondence to Barbara S. Bitros, RN, 437 Pennsylvania Ave, PO Box 249, Fort Washington, PA 19034.E-mail: BBitros@comcast.net; BBitros@LifeChoiceHospice.com 
Article Information
Pain Management/Palliative Care
Articles   |   November 2005
Becoming an Advocate for Cancer Pain Management
The Journal of the American Osteopathic Association, November 2005, Vol. 105, S4-S8. doi:
The Journal of the American Osteopathic Association, November 2005, Vol. 105, S4-S8. doi:
Abstract

Management of cancer pain is still a significant problem in healthcare today despite the fact that cancer pain can be controlled in approximately 90% of patients. Emotional, psychosocial, and spiritual suffering associated with the disease complicates the problem. Guidelines issued by the Agency for Healthcare Research and Quality address management of cancer pain. Pain intensity scales, complementary and alternative methods, and the role of the interdisciplinary care team, as well as the need to provide spiritual support to the patient and family, are included in the discussion.

“Freedom from pain should be seen as the right of every cancer patient and access to pain therapy as a measure of respect for this right.”

—World Health Organization

 
Cancer” and “pain” have become almost synonymous as pain is one of the most feared side effects of cancer, both for the patient and the family. Personal and professional experiences have led the author to champion the cause of ensuring that every patient has access to palliative care and every healthcare professional understands those factors contributing to overall suffering. It is encouraging to see that now most of the healthcare community is viewing the successful treatment of patients with cancer pain as a mandatory aspect of care. 
The standards of the Joint Commission on Accreditation of Healthcare Organizations (JCAHO)2 call for healthcare providers to: 
  • Recognize the right of patients to have appropriate assessment and management of pain;
  • Assess the existence and, if so, the nature and intensity of pain in all patients;
  • Record results of the assessment in a way that facilitates regular reassessment and follow-up;
  • Determine and assure staff competency in pain assessment and management, and address pain assessment and management in the orientation of all new staff;
  • Establish priorities and procedures that support appropriate prescription or ordering of effective pain medications;
  • Educate patients and their families about effective pain management; and
  • Address patient needs for symptom management in the discharge planning process.
Pain affects each person differently. Factors such as age, personality, perception, pain threshold, and past experiences with pain should be considered in the assessment. Psychological factors such as fear, worries, concerns about their loved ones, or knowledge of impending death can also influence pain. Insomnia, fatigue, and anxiety may lower the pain threshold, whereas rest, sleep, pastoral counseling, and diversion can raise it. Physicians should give special attention to certain patient populations, including the very young and the very old, those cognitively impaired, known or suspected substance abusers, and non–English-speaking persons. 
When developing a pain treatment plan, physicians should be aware of unique needs and circumstances of patients from various ethnic, religious, and cultural backgrounds. Elderly patients should be considered at risk for undertreatment of pain. Many elderly people think their pain is “just a part of growing old.” Religious influences may perpetuate a belief that suffering is a penance for sins of the past. All healthcare professionals must recognize that uncontrolled pain is a contributing factor to feelings of hopelessness, suicidal ideation, and at the extreme, requests for physician-assisted suicide or euthanasia. 
As comprehensive as pain assessment tools may be, patients often hesitate to mention that they are in pain. Many psychosocial reasons account for this failure in communicating. Patients may think that they will be perceived as weak, or they may fear “addiction” to pain medication. Many think that pain is to be expected and nothing can be done about it. Frequently, patients say “the doctor should know I have pain,” or if “the doctor thought I needed something, the doctor would have ordered it.” 
In an effort to address these issues, The Agency for Healthcare Research and Quality (formerly the Agency for Health Care Policy and Research) issued the following guidelines3: 
  • Provide patients with information about pain management options and what to expect using them.
  • Utilize standard pain intensity scales to measure pain.
  • Believe the patient and family in their reports of pain and how best to relieve it.
  • Educate patients about the need to communicate unrelieved pain, and assist with ways to report pain, such as the selection of a pain-intensity scale that can be used for this purpose.
  • Make wise use of an array of pain management techniques ranging from medications to nondrug techniques to provide relief.
  • Encourage patients to use medications and other techniques to prevent pain from occurring whenever possible, as an approach preferable to attempting to banish pain once it is well established.
  • Keep checking with patients to ensure that pain reduction efforts are working well and providing adequate relief.
  • Empower patients and their families to seek the best pain relief possible.
Figure 1.
Acronym for guideline to assess pain. (Source: Jacox AR, Carr DB, Payne R, Berde CB, Breitbart W, Cain JM, et al. Management of Cancer Pain. Clinical Practice Guideline No. 9. AHCPR Publication 94-0592. Rockville, Md: Agency for Health Care Policy and Research. US Department of Health and Human Services, Public Health Service, March 1994. Available at http://www.ahrq.gov/news/gdluser.htm. Accessed August 10, 2005.)
Figure 1.
Acronym for guideline to assess pain. (Source: Jacox AR, Carr DB, Payne R, Berde CB, Breitbart W, Cain JM, et al. Management of Cancer Pain. Clinical Practice Guideline No. 9. AHCPR Publication 94-0592. Rockville, Md: Agency for Health Care Policy and Research. US Department of Health and Human Services, Public Health Service, March 1994. Available at http://www.ahrq.gov/news/gdluser.htm. Accessed August 10, 2005.)
Providing Patients With Information
Important topics to discuss from the time patients are told they have a cancer diagnosis is the expected course of the disease and interventions that are available. Elizabeth Kubler-Ross, MD, noted fear of pain as being universal when a patient is facing impending death. I have seen that fear in most patients whom I have admitted to hospice. Many have endured long bouts of chemotherapy and radiation and suffered not only from effects of the disease, but also from treatment modalities that have failed them. Family members, already exhausted as caregivers, fear they will be forced to witness a painful decline. It is my practice not to wait for the question patients and families are afraid to ask, but rather to let them know early in the discussion that though we do not have the ability to cure all disease, we do have the ability to manage symptoms that may arise as the disease progresses. 
Knowing that pain will be treated as a priority and controlled—no matter what its cause or how severe it might become—comforts patients and their families. It should be reinforced, as often as necessary, that appropriate use of pain medications is not drug abuse but a legal, therapeutic, and important part of treatment. Unrelieved pain can slow healing, isolate patients from enjoying family, friends, and social events, and interfere with thinking and concentration. Pain, if not treated, is exhausting, contributing to fatigue and depression, and it can affect the overall quality of a patient's life. 
Oncology staff have contact with patients throughout the continuum of cancer care and are in an ideal position to advocate for pain relief. Studies by the World Health Organization (WHO) show that as much as 90% of all cancer pain can be relieved.2 Sharing this information with patients and families can provide much needed reassurance and help alleviate fears. 
Using Standard Pain Intensity Scales to Measure Pain
An ABCDE acronym written for cancer pain provides a guideline for assessing pain3 (Figure 1). This guideline should be communicated to all members of the healthcare team, patient, and family. It is a contract between the physician and the patient and establishes a sense of trust and commitment extremely important for successful management of cancer pain and symptoms. 
Educate patients about the need to communicate unrelieved pain, and assist with ways to report pain, such as the selection of a pain intensity scale that can be used for this purpose. 
By now, most members of the healthcare team are familiar with the numeric scale for rating pain intensity (Figure 2, top) and the Wong-Baker FACES Scale (Figure 2, bottom4). Although these tools are widely used and accepted, there are some drawbacks related to interpretation. Patients often ask: 
  • “Do I rate my pain before or after I've taken pain medication?”
  • “The worst possible pain I've ever had was related to an accident (or surgery) and not to my cancer. Does that count?”
  • “If I rate my pain at 8, will medication be available to me if the pain gets worse?”
  • “My face feels like a 6, but I'm constipated!”
Figure 2.
Top: Numeric scale for patient's rating of intensity of pain. Bottom: Wong-Baker FACES Scale used for patients to rate the intensity of their pain. (Wong-Baker FACES Scale from Hockenberry MJ. Wong's Essentials of Pediatric Nursing. 7th ed. St Louis, Mo: Mosby, Inc; 2005:1301. ©2005 by Mosby, Inc. Reprinted with permission.)
Figure 2.
Top: Numeric scale for patient's rating of intensity of pain. Bottom: Wong-Baker FACES Scale used for patients to rate the intensity of their pain. (Wong-Baker FACES Scale from Hockenberry MJ. Wong's Essentials of Pediatric Nursing. 7th ed. St Louis, Mo: Mosby, Inc; 2005:1301. ©2005 by Mosby, Inc. Reprinted with permission.)
Patients may relate to a frown or tears when they are depressed or anxious about seeing the doctor. Physicians need to maintain an awareness that suffering may be emotional or spiritual. Patients may downplay the severity of their pain in the presence of family members so as not to upset them. In a clinic setting, patients may see a different healthcare professional at each visit with each physician interpreting the patient's response differently. Adhering to the previously cited ABCDE acronym will help ensure continuity of appropriate pain management techniques while considering the differences and unique perspective of individual patients. Educating both patient and family about the need to communicate unrelieved pain in a manner consistent with their style will build the trust so critical in the physician-patient relationship. 
Pain assessment in the disoriented or confused patient is challenging but necessary. Ask these patients “Yes” or “No” questions that do not require a descriptive response. If the patient is incapable of rating pain on a scale of 0 to 10, an alternative is to ask if the pain is mild, moderate, or severe. Patients who are demented or aphasic might relate more to the happy-to-sad faces scale. Healthcare providers should watch for nonverbal cues such as restlessness, agitation, excessive perspiration, pupil dilation, and anorexia. 
Pain assessment in the comatose patient can be particularly difficult to determine because symptoms may be related to pain or possibly some other type of physical condition. Clues to watch for are agitation, a change in vital signs, diaphoresis, groaning, or grimacing, especially with movement. 
In addition to disease progression and tumor effect, physicians also need to be aware that treatment adverse effects (eg, chemotherapy-induced mucositis or neuropathy; radiation-induced plexopathy; opioid-induced obstipation) may also cause pain.1 Most patients being assessed, especially the elderly, will report pain unrelated to the cancer, such as tension headaches, arthritis, and angina. Accurate assessment and frequent reassessment of all causes of pain are the cornerstones of effective treatment in the patient with cancer. 
It is essential to make wise use of an array of pain management techniques to provide relief, ranging from medications to nondrug techniques. 
In most patients, nondrug treatment modalities should be used in addition to analgesics with emphasis to the patient that they do not replace pain medication. Physicians should begin by asking the patients what usually helps with their pain and encourage them to continue using whatever that is if it is safe and not contraindicated. Patients often offer a wealth of information concerning pain-relieving techniques that work for them. Many of these techniques have been handed down through generations. Although they may have no basis in scientific fact, patients believe they work, and sometimes they do. 
Although opioids, hot and cold applications, and physical therapy are widely used and accepted for pain management, complementary and alternative methods (CAM) are just now gaining acceptance.5 Many open-minded physicians and nurse practitioners are now incorporating reflexology, massage, reiki, shiatsu, and acupuncture into care plans. Naturopathic and homeopathic remedies are being researched for their efficacy and may bring additional relief to pain sufferers. 
Figure 3.
Instructions for deep breathing and relaxation. (Adapted from Deep breathing for relaxation with the option of peaceful imaging. In: McCaffery M, Pasero C. Pain: Clinical Manual. 2nd ed. St Louis, Mo: Mosby, Inc; 1999:420. © 1999 Mosby, with permission from Elsevier.)
Figure 3.
Instructions for deep breathing and relaxation. (Adapted from Deep breathing for relaxation with the option of peaceful imaging. In: McCaffery M, Pasero C. Pain: Clinical Manual. 2nd ed. St Louis, Mo: Mosby, Inc; 1999:420. © 1999 Mosby, with permission from Elsevier.)
Use of herbal products in the United States has risen during the past 5 years, whereas discussion of their use with medical professionals remains suboptimal.6 A discussion of such use should be part of the initial assessment. Although products such as shark cartilage or sea cucumber have not been proven to be effective in fighting cancer or preventing pain, patients might be taking them. They may choose to continue taking them, but to prevent harmful drug interaction, they should be encouraged to report all herbal remedies or supplements they are taking. 
I recall the 45-year-old woman with newly diagnosed pancreatic cancer. My reassurance to her that we would deal with any pain or symptoms that might arise was countered with her response that she would deal with it by drinking the right blend of teas and having her “colon cleansed” every few weeks to remove any “impurities” that would cause pain. She also believed that becoming more aggressive with her program would change the course of the disease. Although she died 6 months later, she was pain and symptom free until the end. This patient remained calm and in control of her care which led to her acceptance of the disease and its outcome. She was an inspiration to all—her family and the hospice team assigned to her care. 
Before suggesting a new pain management technique, it is important to assess the patient's level of fatigue, cognitive status, and ability to concentrate. Some patients have barely enough time to perform activities of daily living, so adding something new may overwhelm them. Asking the patient's family and friends if they wish to be involved in nondrug pain treatment modalities is not simply a courtesy. Some caregivers may welcome a technique like massage that allows them to touch the patient and “do something.” However, not all patients or family members are comfortable with a technique that involves touch.7 
One complementary mode of therapy that is receiving attention in the literature is qigong. This treatment is the cornerstone of traditional Chinese medicine and consists of gentle flowing body movements, breathing, and quieting the mind. Qigong facilitates the movement of qi, the vital life energy throughout the body, thereby enhancing health and promoting a sense of well-being.8 Like tai chi chuan, this practice gives the patient a much-needed sense of control and can assist in pain management through relaxation and deep breathing. 
It is imperative that healthcare professionals explore the use of CAM with their cancer patients, educate them about potentially beneficial modes of therapy, though there is limited available evidence of effectiveness, and work toward an integrated model of healthcare provision. 
Patients should be encouraged to use medications and other techniques to prevent pain from occurring whenever possible as an approach preferable to attempting to banish pain once it is well established. Pain is easier to prevent than to treat. Patients should be instructed to take prescribed medication when the pain is mild or anticipated rather than severe. According to principles of the WHO analgesic ladder, pain-relieving drugs should be administered by the clock rather than on an as-needed basis. The logic is to maintain reasonably constant blood levels. Provision should also be made to administer rescue doses for breakthrough pain. If possible, medication should be given by mouth, a route that is simple, convenient, cost-effective, and commensurate with patient independence and control.9 
Addiction is a concept still misunderstood by healthcare professionals and feared by patients. It is defined as “a primary, chronic, neurobiologic disease, with genetic, psychosocial, and environmental factors influencing its development and manifestations. It is characterized by behaviors that include one or more of the following: impaired control over drug use, compulsive use, continued use despite harm, and craving.”10 
Fears of creating addiction, especially in those with a terminal illness, should not be a concern in prescribing opioid doses sufficient to control pain. Patients and families need reassurance from the physician that their pain is being expertly managed. These reassurances give the patient “permission” to take those medications necessary to treat them for pain and symptoms. 
Complementary modes of therapy such as guided imagery, music, aromatherapy, and meditation have been useful in helping patients prevent pain from occurring. Patients can be taught to simply close their eyes, take several deep breaths, and visualize their “happy place” when they feel anxious about pain (Figure 3). 
Taking a bath, reading a favorite book, walking in nature, drinking chamomile tea, or spending time with friends can be comforting. Patients are experts about their own lives and their psychosocial-spiritual circumstances and, when allowed to express their personal preferences, beliefs, and values, will be able to identify the complementary modes of therapy that work for them. 
Patients with cancer often have intense psychological and spiritual reactions to the diagnosis and ongoing fear of the disease. They suffer not only from pain related to the diagnosis, but also from symptoms such as headaches, nightmares, muscle tension, and emotional numbness. Emotional and spiritual pain can be just as debilitating as physical pain. Antidepressants, in addition to being a good adjuvant to treat patients in pain, will also treat patients for depressed mood, fatigue, concentration difficulties, insomnia, and other physical symptoms that accompany anxiety and depression. 
An often-overlooked aspect of cancer treatment is care of the human spirit. If nurtured, it is strong enough to sustain individuals when their body, mind, and emotional strength are depleted. Many hospice patients express a crisis of faith when given a cancer diagnosis. According to Torosian and Biddle in Spirit to Heal,11 many patients feel a sense of abandonment by God. These feelings can foster intense hopelessness and despair. Spiritual hopelessness can contribute to the overall suffering felt by those in pain. This feeling is especially true when combined with the trauma of a cancer diagnosis.11 
When treatment is no longer effective or the patient desires to forego treatment, hospice care, with its broad focus on the suffering of those dying and their families, is the best option. It will increase the size and capabilities of a healthcare team. Despite the best efforts of physicians, they often have little ability to reverse the course of malignant disease. Accepting that fact allows physicians to pursue the meaningful work of helping patients come to terms with their illness, develop a deeper patient-physician collaboration, and become as aggressive as necessary to manage pain and related suffering. 
Comment
A diagnosis of cancer is frightening for many reasons. With careful attention to the pain the disease might cause, physicians can work toward removing the fear of pain from the complex myriad emotions that will eventually arise. An interdisciplinary team approach including physicians, nurses, social workers, chaplains, and physical therapists will ensure the patients are exposed to the many medications, procedures, psychological, spiritual, and complementary modes of therapy available to them. 
 Ms Bitros has no financial or proprietary conflicts of interest related to the subject discussed in this article.
 
 This continuing medical education publication is supported by an unrestricted educational grant from Purdue Pharma LP.
 
World Health Organization. Cited on the National Coalition for Cancer Survivorship; Palliative Care and Symptom Management Pain Web site. Available at: http://www.canceradvocacy.org/resources/essential/pain/#top. Accessed October 26, 2005.
Joint Commission on the Acreditation of Healthcare Organizations. Pain Standards for 2004. Oakbrook Terrace, Ill: Joint Commission on the Acreditation of Healthcare Organizations;2004 .
Jacox AR, Carr DB, Payne R, Berde CB, Breitbart W, Cain JM, et al. Management of Cancer Pain. Clinical Practice Guideline No. 9. AHCPR Publication 94-0592. Rockville, Md: Agency for Health Care Policy and Research. US Department of Health and Human Services, Public Health Service, March 1994.
Wong DL, Hockenberry-Eaton M, Wilson D, Sinkelstein ML, Schwartz P. Wong's Essentials of Pediatric Nursing. 6th ed. St Louis, Mo: Mosby, Inc; 2001:1301 .
Molassiotis A, Fernadez-Ortega P, Pud D, Ozden G, Scott JA, Panteli V, et al. Use of complementary and alternative medicine in cancer patients: a European survey. Ann Oncol. 2005;16:655 –663.
Bruno JJ, Ellis JJ. Herbal use among US elderly: 2002 National Health Interview Survey. Ann Pharmacother. 2005;39:643 –648.
Kemp CA. Qigong as a therapeutic intervention with older adults. J Holist Nurs. 2004;22:351 –373.
Complementary and Alternative Medicine; Cancer Treatment Centers of America; retrieved from http://www.cancercenter.com/complementary-alternative-medicine.cfm.
Reisfield G. Pain management at the end of life (the hospice patient). Available at: http://www.dcmsonline.org/jax-medicine/2001journals/May2001/paincontrol.htm. Accessed October 27, 2005.
American Academy of Pain Medicine, American Pain Society, American Society of Addiction Medicine. Definitions related to the use of opioids for the treatment of pain. Available at: http://www.asam.org/pain/definitions2.pdf. Accessed October 24, 2005.
Torosian MH, Biddle VR. Spirit to Heal. A Journey to Spiritual Healing with Cancer. Wayne, Pa: Spirit Press International; 2004.
Figure 1.
Acronym for guideline to assess pain. (Source: Jacox AR, Carr DB, Payne R, Berde CB, Breitbart W, Cain JM, et al. Management of Cancer Pain. Clinical Practice Guideline No. 9. AHCPR Publication 94-0592. Rockville, Md: Agency for Health Care Policy and Research. US Department of Health and Human Services, Public Health Service, March 1994. Available at http://www.ahrq.gov/news/gdluser.htm. Accessed August 10, 2005.)
Figure 1.
Acronym for guideline to assess pain. (Source: Jacox AR, Carr DB, Payne R, Berde CB, Breitbart W, Cain JM, et al. Management of Cancer Pain. Clinical Practice Guideline No. 9. AHCPR Publication 94-0592. Rockville, Md: Agency for Health Care Policy and Research. US Department of Health and Human Services, Public Health Service, March 1994. Available at http://www.ahrq.gov/news/gdluser.htm. Accessed August 10, 2005.)
Figure 2.
Top: Numeric scale for patient's rating of intensity of pain. Bottom: Wong-Baker FACES Scale used for patients to rate the intensity of their pain. (Wong-Baker FACES Scale from Hockenberry MJ. Wong's Essentials of Pediatric Nursing. 7th ed. St Louis, Mo: Mosby, Inc; 2005:1301. ©2005 by Mosby, Inc. Reprinted with permission.)
Figure 2.
Top: Numeric scale for patient's rating of intensity of pain. Bottom: Wong-Baker FACES Scale used for patients to rate the intensity of their pain. (Wong-Baker FACES Scale from Hockenberry MJ. Wong's Essentials of Pediatric Nursing. 7th ed. St Louis, Mo: Mosby, Inc; 2005:1301. ©2005 by Mosby, Inc. Reprinted with permission.)
Figure 3.
Instructions for deep breathing and relaxation. (Adapted from Deep breathing for relaxation with the option of peaceful imaging. In: McCaffery M, Pasero C. Pain: Clinical Manual. 2nd ed. St Louis, Mo: Mosby, Inc; 1999:420. © 1999 Mosby, with permission from Elsevier.)
Figure 3.
Instructions for deep breathing and relaxation. (Adapted from Deep breathing for relaxation with the option of peaceful imaging. In: McCaffery M, Pasero C. Pain: Clinical Manual. 2nd ed. St Louis, Mo: Mosby, Inc; 1999:420. © 1999 Mosby, with permission from Elsevier.)