The Hospice Journal

ISSN: 0742-969X (Print) (Online) Journal homepage: http://www.tandfonline.com/loi/ippc19

Assessment of the Terminally Ill Patient with Pain: The Example of Cancer Blake H. Tearnan & Clay H. Ward To cite this article: Blake H. Tearnan & Clay H. Ward (1992) Assessment of the Terminally Ill Patient with Pain: The Example of Cancer, The Hospice Journal, 8:1-2, 49-71, DOI: 10.1080/0742-969X.1992.11882719 To link to this article: https://doi.org/10.1080/0742-969X.1992.11882719

Published online: 21 Aug 2017.

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Assessment of the Terminally Ill Patient with Pain: The Example of Cancer Blake H. Tearnan Clay H. Ward

SUMMARY. Efforts to understand pain associated with terminal illness have been guided traditionally by the biomedical model in which psychological and environmental factors are considered inci­ dental and not causally significant influences of pain. More recent conceptualizations of pain, however, recognize that pain can be af­ fected by a variety of factors including mood, beliefs about pain, past learning, as well as physical perturbations. This development has led to assessment strategies that are more comprehensive, multi­ dimensional, and less singularly aligned with a biomedical model. The greatest amount of attention to pain among the terminally ill has focused on cancer patients. Thus, in this paper we will describe a comprehensive, multi-dimensional assessment of cancer pain. Infor­ mation regarding cancer and cancer pain is first presented and then a strategy for comprehensively assessing cancer pain is outlined. Re­ cent developments in the assessment of cancer pain are briefly re­ viewed. BACKGROUND Cancer is a generic term that refers to various diseases that share in common the disruption of normal cell development leading to the invasion of surrounding tissues and metastases. The site of the initial tumor (e.g., Blake H. Tearnan, PhD, is affiliated with the Sierra Pain & Occupational Center, University of Nevada, Reno, NV. Clay H. Ward, PhD, is associated with Psychological Associates, Saint Alphonsus Regional Medical Center, Idaho Elks Rehabilitation Hospital, Boise, ID. Please address all correspondence to: Blake H. Tearnan, PhD, Director of Behavioral Medicine, Clinical Coordinator, Sierra Pain & Occupational Rehabili­ tation Center, 50 Kirman Avenue, Suite 101, Reno, NV 89502. © 1992 by The Haworth Press, Inc. All rights reserved.

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NONINVASIVE APPROACHES TO PAIN MANAGEMENT

breast, prostate, lung, etc.) determines many of its characteristics includ­ ing rate of growth, metastatic pattern, response to medical therapies, and the course, severity and quality of the pain. For example, patients with primary bone tumors and breast cancer complain of significantly more pain than those with lymphomas and leukemia (Foley, 1984). The physical causes of cancer pain are diverse since the disease can originate from multiple sites and metastasize throughout the body. Foley (1979) reported that 78% of hospitalized cancer patients had pain resulting from direct tumor involvement, 50% associated with bone disease, 25% caused by nerve compression, 3% due to invasion of hollow viscus and 19% reported iatrogenically-produced pain, primarily the result of sur­ gery, radiation, or chemotherapy agents. The majority of patients had multiple physical mechanisms for their pain. There are similarities between nerve-related pain of malignant origin and non-cancerous chronic pain. For example, certain cancer therapies can cause pain that resembles the quality and severity of pain arthritics report. However, many cancer pain syndromes, such as tumor invasion of bone, produce pain that is distinctly different and very resistant to conven­ tional medical treatment with systemic analgesics and other modalities. Cancer pain is generally easier to manage in the early stages of the disease. The tumor is more likely localized with minimal destruction of tissue. Systemic analgesics and cancer therapies (e.g., radiation) are usu­ ally effective in controlling pain, and suffering is minimized since most patients and health care personnel are more optimistic about treatment. As the disease progresses, there is frequently a reduction in the effectiveness of systemic analgesics and patients experience greater levels of pain and disruption in daily life. Daut and Cleeland (1982) found that only 6% of patients with nonmetastatic disease reported pain, whereas over 33% of patients with metastatic disease experienced disruptive pain. In cancer pain, intensity tends to vary with the severity of the disease. When patients are first diagnosed, most report little pain. As the disease advances, patients are more likely to complain of pain that is more intense and interfering (Daut & Cleeland, 1982). It is interesting that compared to patients with different diseases, the pain intensity ratings of cancer pa­ tients with metastatic disease are roughly equivalent to patients with rheu­ matoid arthritis and less than patients diagnosed with chronic non-cancer­ ous pain (Daut & Cleeland, 1982). This contrasts with the generally-held belief that cancer pain is the most severe pain condition (Levin and Cleeland, 1985). There is ample evidence that patients with non-cancerous chronic pain experience significant adjustment problems (Turk, Meichenbaum, & Genest 1983). Many patients report difficulties in their work, marriages,

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and enjoyment of everyday activities. They admit to significant levels of mood disturbance and some are addicted to habit-forming drugs. Surpris­ ingly, pain associated with cancer does not appear to be related to the same degree of psychological impairment. For example, Shacham and Reinhardt (1983) found only a moderate relationship between mood and severe pain at initial contact, and little relationship between pain severity and mood in patients with advanced disease. More compellingly, even patients with end-stage disease who complained of poor pain control showed very little mood disturbance. Even though the evidence linking cancer pain to significant psychoso­ cial problems is lacking, it is well accepted that cancer pain patients are at greater risk for developing problems than the general population including difficulties with fatigue, depression, body image distortion, interpersonal strain, and anxiety (Telch & Telch 1986). For many patients, these prob­ lems are enduring. A goal for most clinicians interested in treating the non-cancerous chronic pain patient is to understand the many factors, including behav­ ioral and environmental, that may be influencing the pain problem. It is widely held that sympathy, avoidance of pain, escape from work-related responsibilities, as well as many other factors, can influence the occur­ rence of pain behaviors and affect the pain experience. Treatment efforts are often directed at changing important environmental contingencies and inappropriate ways of managing pain. For instance, when pain is persist­ ent, but non-cancerous, complaints of pain can result in social alienation or may be reinforced by family members. Treatment efforts need to be aimed at discouraging patients from reporting pain and having family members ignore complaints of pain. Continual reporting of pain that is not associated with cancer contributes little information that is useful diagnos­ tically or therapeutically. However, cancer pain is unique in several respects and requires many of the assumptions about non-cancerous chronic pain to be qualified. Pa­ tients with cancer pain should be encouraged to communicate to others when they hurt or feel uncomfortable since the proper titration of analge. sics depends on feedback from patients and new pain may signal a change in the status of the disease. This is not to imply that clinicians should throw the baby out with the bath water by ignoring the role social rein­ forcement and other positive consequences play in exacerbating and main­ taining cancer pain behavior. However, instead of attempting to eliminate the reinforcement of all pain behaviors, extinguishing pain behaviors that are clearly excessive would be an alternative therapeutic goal. One of the main goals in the rehabilitation of patients with non-cancer-

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ous chronic pain is increasing their level of physical activity. The success of treatment is often defined by improvements in overall activity. This is not the case for many cancer pain patients for whom activity may be discouraged or even contraindicated. Some patients experience pain only when active. Moreover, patients with some types of cancer (e.g., patients with vertebral metastases) could endanger themselves if they are physi­ cally active. Still, assessing for the change in activity level since the onset of pain for both cancer and non-cancer pain patients is important. Numerous studies (e.g., Beecher, 1946) have shown the meaning pa­ tients give to their pain can influence the pain experience. For example, patients who expect negative outcomes whenever their pain increases tend to suffer more (Fordyce, 1988). For many cancer pain patients, the pain signals a worsening of their disease and a reminder of their mortality. It represents more than chronic debilitation and discomfort. The anxiety and uncertainty this may generate can influence the total pain experience and make it more difficult for patients to cope (see initial paper by Turk and Feldman in this volume). The quality of the physician-patient relationship is important for all types of pain patients. One recent study showed that chronic non-cancer­ ous pain patients who described their past relationships with physicians as negative, were more depressed, worried more about the future, and had higher levels of overall impairment than patients who reported their rela­ tionship with physicians as more positive (Tearnan & Lewandowski, 1991). The same is likely true of terminally-ill pain patients. Indeed, the relationship with physicians may be more important, since their disease is life-threatening. Perhaps the most significant difference between the two pain condi­ tions, cancer and non-cancer, has to do with the role of analgesic and palliative medications. The goal of most pain therapies for chronic pain is to eliminate any use of habit-forming medications, especially the use of narcotics. Narcotics are associated with increased levels of impairment in chronic pain and may contribute to a deterioration of mood. However, the use of systemic analgesics, if used properly and prescribed in adequate doses, can provide relief to most cancer pain patients, especially when combined with the full range of cancer pain therapies. The reduction of analgesics is rarely a goal for patients with malignant pain. Understanding the cancer pain patient's and their family's knowledge of narcotics in terms of proper administration (e.g., time contingent scheduling) and amount needed to produce analgesic relief is important (see papers by Warner and Rimer et al. in this volume). Many cancer pain patients are undermedicated for pain. Physicians are

Blake H. Teaman and Clay H. Ward

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often reluctant to prescribe analgesics in effective doses because of con­ cerns about addiction and the rapid development of tolerance and respira­ tory depression. Much of the problem of undermedication, however, has to do with patients' and physicians' beliefs about narcotics. For instance, patients may refuse to follow a medication schedule because they do not want to think of themselves as addicts. They may be reluctant to report that the medications are not effective because they do not wish to bother their doctor. Some patients may want to avoid taking narcotics because of the belief that narcotic usage means their disease is beyond hope. There are many other aspects of cancer pain that make it unique. The important point is that the assessment of cancer pain be broad enough to include both acute and chronic pain models.

CANCER PAIN ASSESSMENTS The general approach to the assessment of cancer pain is similar to the assessment of chronic non-cancerous pain. The aim is to understand how the problem of cancer pain is manifested across the various response pa­ rameters: Cognitive, behavioral, physiological, and emotional (see paper by Ahles & Martin, this volume). Uncovering the relationship between certain stimuli and the occurrence of pain and factors that may help strengthen pain behavior (e.g., grimacing, crying out, irritability, etc.) is also essential. This requires a knowledge of frequently occurring control­ ling variables unique to cancer pain (see earlier discussion on cancer pain) and attention to the multiple factors that can affect the assessment process and influence a patient's report of pain.

Response Parameters Cognitive. There are numerous studies with chronic non-cancerous pain patients that show the importance of cognitions in the exacerbation of pain and overall impairment (Turk et al., 1983; Turk & Rudy, 1987). Patients who harbor certain maladaptive beliefs about their pain or negatively ap. praise future events whenever their pain increases are more depressed, Jess active and more impaired overall (see introductory paper by Turk and Feldman, this volume). Although the same empirical support is lacking in the area of cancer pain, there is every indication future studies will show a similar relationship between cognitive events and exacerbations in cancer pain. An understanding of cognitive events requires an analysis of cognitive errors, negative self-statements, and negatively perceived consequences. Cognitive errors refers to the maladaptive thinking patterns patients often

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report about their pain. These thoughts are considered faulty because they are unrealistic, distorted, and negative. For instance, patients who believe they can never be happy as long as they have pain are not being realistic. They are distorting their view of the future with little or no factual infor­ mation on which to base their beliefs. These patients are more likely to be depressed and to suffer more than patients who believe that pain is diffi­ cult to experience but they can manage and get on with their lives. Patients can present with different types of cognitive errors. Frequently thoughts include beliefs that they should be able to control the pain better, there is nothing they can do to control the pain, pain is inevitable and should be tolerated, pain and misery are one and the same, doctors do not want to be bothered with complaints of pain, and if the pain gets any worse they could lose their mind or something terrible might happen, and so forth. Self-statements are internal dialogues patients have about their pain re­ flecting the patient's appraisals of their pain experience and coping re­ sponses available to control their pain. They differ from cognitive errors because they are not analyzed for any underlying faulty logic such as "I will never be able to control my pain." Negatively perceived consequences refer to the negative expectations cancer patients sometimes report whenever their pain increases. Clinical observation suggests that cancer pain patients often appraise future events associated with their pain experience negatively. Tearnan and Lewan­ dowski (1991) identified five areas of concern in their work with chronic non-cancerous pain patients. These include expectations that the pain could worsen and may not settle down, thoughts of reinjury, concerns about suffering psychologically, thoughts about loss of productivity or ability to accomplish things, and the expectation that pain could nega­ tively affect others. They demonstrated that negatively perceived conse­ quences were associated with high levels of depression and overall impair­ ment. Cognitive errors, self-statements and negatively perceived conse­ quences can be assessed directly during the initial interview or the patients can self-monitor their thoughts and self-statements over a period of days using a diary (Turk et al., 1983). Measures used with chronic pain patients can sometimes be adapted for use with cancer pain patients (e.g., The Behavioral Assessment of Pain, BAP, Tearnan & Lewandowski, 1991). The problem is that these instruments have not been validated with cancer pain patients. Overt Behavior. It is well known in research with chronic non-cancer­ ous pain patients that overt behaviors are associated with greater levels of impairment (Keefe & Block, 1982). Patients who grimace, walk in a way

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that others could notice they are in pain, moan, cry out, use alcohol and pain medications, and rub the painful area report higher levels of depres­ sion, activity interference, and have maladaptive beliefs about their pain (Tearnan & Lewandowski, 1991). They are also more likely to be treated by others as dependent and impaired. These same observations could be made about cancer pain. Nociceptive input only accounts for part of the behavioral impairment observed in acute (including cancer pain) and chronic non-cancerous pain. Patients exposed to higher levels of social reinforcement and who suffer more may exhibit more pronounced pain behavior. The assessment of pain behavior of terminal patients can include both verbal and nonverbal responses such as moans, complaints and grimacing. Estimates of physical activity and range of motion are also important as­ pects of pain behavior. Measures of physical exercise, time spent in bed, ability to do chores and the like have all been used to measure pain behav­ ior with chronic non-cancerous pain patients (Keefe, Brown, Scott & Ziesat, 1982). Measures of physical activity should be limited to the range of behaviors the patients are capable of engaging in but are restricted because of pain. The use of analgesics should also be considered in the assessment of pain behavior. The type and amount of drug as well as how the dose is scheduled should be examined. Moreover, the duration of effect and how activity and mood change upon administration is important to know. Any use of adjuvant drugs, such as mild tranquilizers, should also be recorded. However, because prescribing practices differ from one physician to the next, the use of analgesic and adjuvant drugs as a measure of the pain experience is often unreliable. The easiest and least costly method of assessing pain behavior is through patient self-report. Although self-report data collected by using patient diaries, direct questioning or objective questionnaires is suscepti­ ble to distortion, it is a valid and in most cases reliable way of analyzing behavior. The economical and practical advantages of self-report, espe­ cially with terminal patients, insure their continued use. One very useful · self-report measure of pain behavior is ratings of pain interference in ac­ tivity. Self-report of pain interference has been shown to be significantly related to mood, pain intensity, and physical impairment in cancer pain patients (Cleeland, 1984). Any self-report measure used with terminal patients must be kept sim­ ple, easy to use, and brief. Many terminal patients are weak, fatigued and obtunded because of their disease or high narcotic doses. Terminal pa­ tients may not be able to follow complicated instructions or complete

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lengthy measures. An additional reason for simplicity is patient compli­ ance. Patients do not always share their clinician's enthusiasm for collect­ ing data. Other methods of collecting information about pain behavior include direct observation by significant others, nursing personnel, other thera­ pists and physicians (Ahles et al., 1990). However, ratings by others can be costly in terms of time, training and interference with other procedures. An alternative is the use of simple rating sheets the observer can use on a time sampling basis (e.g., every 4 hours) or at a specific time period. The convenience of making observations only once daily, however, is done at the expense of reliability due to memory decay. Sensory-Physiologic. There is no reliable physiological measure of pain, especially chronic pain (Hilgard, 1969). Heart rate, blood pressure, respiration, electrodermal response and muscular activity have all been examined as biological correlates of pain, but none, with the exception of muscular activity, have proved useful. Instead, clinicians have relied upon the sensory-physiological descriptions of patients to help improve their understanding of the patient experience. These can include pain intensity, temporal aspects of the pain, pain location, and pain quality. Intensity measures are usually numerical ratings of subjective pain in­ tensity. Patients are asked to place a mark somewhere between bipolar descriptors of high and low pain intensity or they are simply instructed to provide a verbal estimation of the amount of pain between two points. Additionally, patients are often asked to estimate the average, least, and worst pain, usually in the past week (see below for a more detailed discus­ sion). The temporal quality of pain involves estimating the frequency and du­ ration of the pain. The pain of most terminal patients is relatively constant but may vary considerably from hour to hour and day to day. Some pa­ tients may remain pain-free but experience one or two episodes of excruci­ ating pain with movement or some other pain-producing event. It is im­ portant to understand the frequency, duration, and the interval between exacerbations of pain. Data reflecting the location of the pain is usually measured by having patients shade the front and back of human figures. Pain location provides information about pain diffuseness and may signal the underlying tumor source. Cleeland, Tearnan, and Serlin (1988) showed an association be­ tween pain location drawings and the primary cancer site. For example, patients with breast cancer shaded significantly more chest and rib area than other cancer patients. Pain location drawings may also indicate the physical mechanism of pain. Although no studies have shown any clear

Blake H. Teaman and Clay H. Ward

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relationship between pain drawings and the underlying physical distur­ bance, it is generally accepted that certain drawings are highly correlated with some pain conditions, such as nerve-related pain. The quality of the pain patients admit to can provide information about pain intensity and may indicate the presence of emotional disturbance. Tearnan and Cleeland (1990) reported that cancer pain patients used a variety of words such as aching and burning to describe their pain. Certain words such as sharp were associated with higher levels of pain intensity. Overall, patients used mostly sensory descriptors such as dull and ache. Evaluative words (e.g., severe) accounted for only 11 % of a total word usage and the use of affective words (e.g., miserable) were nearly absent. The authors encouraged the use of word descriptors list with cancer pain patients such as the McGill Pain Questionnaire (Melzack, 1975) since findings from chronic pain patients have shown affective and evaluative words may be better measures of pain intensity, and they may be more useful indicators of mood and psychiatric disturbance than sensory words (McCreary & Turner, 1983). Unfortunately, pain words do not help dis­ criminate cancer pain patients with varying pain etiologies (Tearnan & Cleeland, 1990). Sensory-physiological data is usually collected by asking patients to describe their pain and its location. Patients can also be given instructions in self-monitoring or told to complete questionnaires such as the McGill Pain Inventory. Instrumentation such as electromyographic recordings are sometimes used, but these procedures are usually limited with terminal patients for practical reasons and other considerations discussed above. Sometimes the most useful sensory-physiologic data is retrieved by health care personnel in the hospital setting where the verbal descriptors of pa­ tients can be sampled fairly often. Pain Precipitants and Maintenance Variables

The hallmark of any sound assessment is understanding the relationship between the onset and occurrence of the target problem and various stim­ uli. The most consistent relationships provide clues to the causal under­ pinnings of the problem. The proper understanding of pain requires an examination of the multiple cognitive, behavioral, physiological, emo­ tional and environmental stimuli that could be contributing to pain. Cog­ nitions (e.g., thoughts, beliefs, images) are one of the most important areas to explore with pain patients since they may mediate the effects of other pain determinants. For example, patients experiencing an increase in their pain because they overextended themselves physically will suffer more and complain of greater levels of pain if they begin to worry about

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the pain experience, or misinterpret the pain increase as a serious exacer­ bation of their disease. Thoughts can be assessed by querying patients directly using numerous examples to systematically prompt the recall of important precipitants. Clinical experience suggests that patients do not provide much informa­ tion if they are simply asked "Are there any thoughts or images that may make your pain worse?" Unfortunately, there are currently no valid in­ struments for comprehensively assessing the beliefs of cancer pain pa­ tients. Examples of cognitive antecedents include images of hot pokers and fire, thoughts that the pain will get much worse, and beliefs such as "I am useless because I cannot do the things I used to be able to do." Many cognitive antecedents would also be useful in defining the cognitive re­ sponse of pain. Whether they should be included as antecedent stimuli is based on the presumption they may also exacerbate or trigger the pain state. Physiological pain precipitants can be any event that alters the biologi­ cal constitution of patients causing an increase in pain. This obviously includes the disease, but also treatment related adverse effects that can cause patients to feel more vulnerable or intolerant for coping with their pain. For instance, cancer patients suffering from nausea, weakness, fa­ tigue or dry mouth may experience an increase in pain. Moreover, patients ingesting certain substances that stimulate the central or peripheral ner­ vous system or substantially alter the biochemistry of patients could mod­ ify the pain experience. Overt behaviors are probably the largest category of pain precipitants. Examples include walking, lifting, sitting, eating, dressing, standing, or getting in and out of bed, and inactivity for some patients. The nature of the terminal disease and location affected will determine to a large extent the type of behaviors that are most likely to trigger pain, but decondition­ ing from excessive rest or treatment related impairment can also influence behaviorally-induced pain. The best method of assessing the relationship of pain behavior to pain exacerbation is to instruct patients to self-monitor their activity and report changes in their level of pain intensity. It is well known that emotional events can exacerbate pain. There is strong evidence showing that pain patients who are more anxious com­ plain of more severe levels of pain and feel more out of control (see, Fordyce, 1979, and initial paper by Turk and Feldman in this volume). Patients who are more emotionally upset also suffer more. The cancer patient who learns of a reoccurrence of their disease will undoubtedly experience a hi$her emotional state that could trigger an increase in per-

Blake H. Teaman and Clay H. Ward

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ceived pain, especially since the pain may be interpreted as a constant reminder of cancer. Questions that elicit from patients information about changes in pain intensity and suffering in relationship to emotional epi­ sodes should be a standard part of any assessment protocol. For example, patients should be asked "Does your pain seem to worsen when you are feeling upset or stressed?" Environmental events can often precipitate pain. Many are unique to the hospital setting. For example, some patients complain that their pain seems to worsen whenever medical rounds occur or when they are alone. Very often patients report their pain increases when they are uncomforta­ ble because their room is too cold or hot or the surroundings are too noisy. Pain complaints vary sometimes with social interactions. Spouses who are solicitous and pay more attention to pain behaviors will obviously impact the pain experience differently than spouses who punish or ignore reports of pain. Antecedent events should be clearly specified and reliably understood between patients and clinicians, staff and/or significant others. Simplicity and specificity are the rules of a good behavioral description. Too often, patient and staff are asked to monitor pain and note the presence or ab­ sence of antecedent events without being sure what to look for. Coping Strategies

It is important to understand the behaviors that patients engage in to cope with pain since coping strategies may provide clues to the mainte­ nance of the pain problem and frequently occurring complications of can­ cer pain such as depression. Tearnan and Lewandowski (1991) found that chronic non-cancerous pain patients who relied on passive coping modali­ ties, such as hoping or praying the pain will go away and using pain medication, tended to have significantly higher levels of anxiety, depres­ sion, activity avoidance, maladaptive beliefs, and overall impairment compared to patients who use more active methods of managing their pain (e.g., stretching). Other researchers (Brown & Nicossio, 1987) have also found that passive methods of coping with pain are related to higher levels . of impairment. There is also a strong association between the tendency of chronic pain patients to worry that something terrible could happen be­ cause of their pain and avoidance of activities due to pain, depression and maladaptive beliefs about pain (Tearnan & Lewandowski, 1991). Al­ though the coping strategies of cancer pain patients have not been exam­ ined as closely, similar findings may exist. Coping strategies should be assessed across similar dimensions used to

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systematically explore pain antecedents. That is, cognitive, behavioral and physiological strategies for managing pain should be examined. These can include self-statements, ignoring the pain, reinterpreting the pain, praying, and distraction. Behavioral coping strategies can include bed rest, physical or social activities as distractors, use of heating pads, ice, and warm baths. Medication and alcohol are common physiologic meth­ ods used to diminish pain. Self-monitoring is an effective method of gath­ ering information concerning pain coping strategies. However, question­ naires and direct interviewing can produce useful information as well. Consequences

The immediate consequences of pain behaviors if sufficiently reinforc­ ing or punishing, can determine the rate at which the pain behavior occurs (see initial paper in this volume by Turk and Feldman). This axiom is well understood for chronic non-cancerous pain but applied less often to the problem of cancer pain (Ahles et al., 1990). However, medical staff and significant others sometimes reinforce the behaviors of terminal patients that are clearly excessive. Moreover, patients themselves often engage in certain behaviors that reinforce or punish pain behavior. For example, patients who overextend themselves physically causing pain to increase sharply, may avoid engaging in that activity in the future. Often the im­ mediate consequences of pain behavior will not be readily apparent. Care­ ful questioning of the patient, patient self-monitoring, and observations by others will help to determine which factors may be important. Onset, History and Development

The assessment strategy should involve the examination of the onset, history and development of the pain complaint. This information is impor­ tant since it may help the clinician put the pain problem in perspective and may lead to the discovery of antecedent stimuli that were overlooked. The knowledge of previous therapy attempts is also important to know since steps may need to be taken to correct the inadequacies of past failures and build on previous successes. In addition, examining the development of the patient's problem provides clues regarding past coping attempts and over what time frame changes in the pain problem occurred.

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Other Complications

Pain associated with terminal illness as with any chronic pain can pro­ duce adverse changes in mood, work, family, physical activity and per­ sonal relationships. These are areas that need to be routinely evaluated to determine the overall impact of the pain problem on the patient's life. These changes, if pronounced, can compromise the patient's response to medical treatment and interfere significantly with the patient's quality of life. They can also amplify the pain experience. Ratings of pain interfer­ ence in mood, pleasant activities and overall enjoyment of life can be used in addition to more traditional assessment tools (e.g., Beck Depression Inventory, Beck, Ward, Mendelson, Moch, & Erbaugh, 1961). Interviews with significant others can also provide worthwhile informa­ tion regarding the impact pain has had on the family and marital relation­ ship. Questions aimed at determining how the family or marital interac­ tions have changed since the onset of pain are useful. We have observed that the families and spouses of patients often complain of reduced or strained communication, diminished sexual activity, and feelings of help­ lessness. Formulation

Formulating a treatment plan and making predictions regarding a pa­ tient's response to intervention is the final step in the assessment process. This is accomplished by generating several hypotheses about the onset, development and maintenance of the patient's pain complaint and propos­ ing a treatment intervention based on these conclusions that would most likely result in the desired change. For instance, terminal patients who report that anxiety exacerbates their pain and their pain diminishes after receiving Diazepam, might be good candidates for relaxation/biofeedback therapy. Assessment Instruments

Numerous instruments have been developed or used to assess pain and the level of psychological or mood disturbance in patients with pain. The McGill Pain Questionnaire (Melzack, 1975) and the Minnesota Multi­ phasic Personality (Hathaway & McKinley, 1940) are examples of some­ what lengthy and complicated measures that cancer patients have diffi­ culty completing because of their medical status. Ferrell, Wisdom, and Wenzl (1989) have used multidimensional interviews by oncology nurses

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to assess information on psychological and physical well-being, symptom control, and social support. Unfortunately this approach can be time con­ suming and impractical in many treatment settings. The Sickness Impact Profile (SIP; Bergner, Bobbitt, Pollard, Martin, & Gilson, 1976) is another standard measure of physical and psychosocial disability that can be utilized in cancer pain patients provided they are able to accurately complete the questionnaire. Even chronic pain patients have been found to experience concentration and memory difficulties that can confound assessment if the questionnaires require sustained periods of concentration or memory abilities (Jamison, Sbrocco, & Parris, 1989). This is likely to be more of a problem in terminal patients because of their disease and medication side effects. Assessment instruments utilized in cancer pain patients should provide the maximum amount of information on pain and psychological status while at the same time being relatively short, easily understood, and self-administered with little or no staff in­ struction or supervision. Probably the most widely utilized assessment procedure is some form of a pain rating scale that measures most severe, typical, and least pain intensity levels. Similar ratings can be obtained for the levels of how bothersome or disruptive in daily activities the pain is at its worst, usual, or lowest levels. These ratings are usually obtained on a numerical scale (e.g., 1 to 6) or on a visual analogue scale utilizing a straight line an­ chored by verbal descriptors such as "no pain" and "worst pain imagin­ able," where the patient marks on a 10 cm line (visual analogue scale). This rating is converted to a numerical value by measuring the location of the patient's response on the line. Similarly, sensory, emotional and other aspects of the subjective pain experience can be assessed by having the patient rate certain words like horrible, excruciating, intolerable, etc., on numerical or visual analogue scales. In general most measures of pain intensity or pain diaries are equally valid in assessing acute pain (Jensen, Karoly, O'Riordan, Bland, & Burns, 1989; Wilkie, Lovejoy, Dodd, & Tesler, 1990). Jensen et al. (1989) did find that an 11-point box scale was somewhat more reliable in that every patient responded correctly to the instructions. Teaching the patient to rate their pain on these simple pain intensity scales is useful in monitoring effectiveness of pain interventions (Cleeland, 1984); however, there are some problems with this procedure. Austin, Cody, Eyres, Hefferin, and Krasnow (1986) found that some ter­ minally ill cancer patients were unable or unwilling to use numerical rat-

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ings. Some patients also tended to simplify the rating system into none, mild, moderate, and severe categories. Jamison et al. (1989) found that most patients overestimated their daily pain intensity levels when asked to recall their pain during the previous week. They also found that emotional distress, conflicts at home, medication usage and inactivity tended to in­ crease the unreliability of pain intensity ratings. There is also often a low correlation between nurses' ratings of the patient's pain based on behav­ ioral observation and the patient's self-report of pain (Teske, Daut, & Cleeland, 1983). These limitations of pain intensity and self-monitoring rating scales simply indicate the need for additional assessment proce­ dures. The Brief Pain Inventory (BPI) was developed for the specific purpose of administration to cancer pain patients (Daut, Cleeland, & Flanery, 1983). The BPI is a relatively short questionnaire that assesses several aspects of cancer pain. Several types of items are included such as whether or not the patient has had any surgery in the last month; front and back human figures with instructions for the patient to shade the painful area; numeric ratings of worst, average, least and present pain intensity; requests for the patient to describe any pain diminishers or antecedents that have been associated with pain relief or exacerbation; current pain treatments; and questions regarding response to treatment. The patient is also asked to rate several pain adjectives, such as "throbbing" and "burn­ ing," on a scale of O to 10 and to rate how much they feel their pain has interfered with their mood, general activity, walking ability, normal work, relations with other people, sleep, and enjoyment of life. Finally, the questionnaire contains a shortened version of the Profile of Mood States (Shacham, 1983) to assess levels of tension, depression, energy, and anger. The BPI has demonstrated respectable validity and reliability and has been shown to be a useful pre- and post-treatment measure. Ahles et al. (1990) have developed a behavioral observation technique for the assessment of pain behaviors in cancer patients. They operationally defined guarding, bracing, rubbing, grimacing and verbal expressions of pain as five domains of pain behavior. The percentage agreement and reliability for this rating system were adequate except for the verbal ex­ pressions of pain. The validity of this assessment procedure was indicated by strong correlations between the Sickness Impact Profile-Physical Scale and the pain behaviors of guarding and bracing. The pain behaviors also correlated well with nurses' and students' ratings of pain. An important point demonstrated in the Ahles et al. (1990) study was

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that behavioral observations of pain behaviors provided information that was specific to physical impairments rather than psychosocial factors. The patients' ratings of pain were not correlated with pain behaviors. These dimensions appear to be somewhat independent further supporting the need for multidimensional pain assessment in cancer patients. Psychoso­ cial impairment may be more linked to emotional, sensory, and cognitive experiences of pain. A simple pain behavior rating scale or checklist should provide valuable additional information toward effective pain management and the reduc­ tion of suffering and functional disability in cancer pain patients. One problem with behavioral observation assessment that must be considered is whether or not the patient is using a psychological pain relief technique. For example, a patient may not be restless or demonstrating pain behav­ iors because they are using distraction, relaxation, or guided imagery in response to a pain flare. GENERAL ASSESSMENT ISSUES

Several issues need to be addressed when assessing the cancer pain patient. These matters can significantly effect an evaluation, and unless the clinician is cognizant of their presence they can lead to spurious con­ clusions and/or disrupt the assessment process. Setting

In most cases, when conventional therapy fails to relieve pain, a mem­ ber of a liaison service specializing in pain is consulted. The role of the consultant in a medical center is that of an expert expected to render an opinion quickly without consuming too much of the patient's time. Under these circumstances, lengthy procedures are unsuitable since the consul­ tant often has to present recommendations after only one session. This necessitates a streamlined version of an ideal assessment. If the consultant is expected to treat the patient, he or she can afford more elaborate proce­ dures but is still limited by the duration of the residence of the patients and by the physical and mental incapacitation of many cancer patients. The clinician should be sensitive to the patient's primary care pro­ viders, who may not show their enthusiasm for psychological control of pain and may see the intervention as interference (see concluding chapter by Turk and Feldman, this volume). Unfortunately, these negative opin­ ions can sometimes be communicated to the patient and compliance re­ duced. Frequent physician updates on the patient's progress and rationale

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for particular assessment and treatment protocols can help eliminate many obstacles. Overcoming a Reluctance to Participate

Oftentimes the patient's beliefs about the role of a psychologist or other behavioral clinician run counter to their expectations for being treated for medical problems. As a result, some patients are reluctant to participate in assessment or treatment. DeGood (1983) discussed practical ways in which to overcome this barrier.His suggestions can be applied to terminal patients.In brief, he first explains to patients that he is a psychologist and reassures them that pain often produces changes in one's life that can affect work, mood, and so forth.According to DeGood, this usually helps to mollify the implicit message that the referral was made because the doctor thinks "the pain is all in my head." Although the credibility of cancer patients is rarely questioned as to the organic basis of their pain, they may have a history of diagnostic procedures in which nothing was discovered and may believe that the severity of the pain and their inability to tolerate it is related to psychological weaknesses. DeGood mentions that this initial explanation also helps challenge the belief that because psychological variables may be correlated with the exacerbation of pain, this makes the physical problem less legitimate. DeGood (1983) recommends that the interview initially focuses on physical symptoms. This helps reduce the defensiveness of the patient and establishes the credibility of the clinician.He advised that when assessing other aspects of the pain complaint, such as depression, these topics be introduced with a statement to the effect that "pain often makes us feel ..." Patients are often reluctant to admit to emotional problems since doing so compares them with something wrong mentally. Finally, we found that cancer patients need to be assured that their participation in no way indicates that their medical therapy, including the use of analgesic medications, will be jeopardized. Issues of Mortality

The issue of mortality is an obvious difference between cancer pain and non-cancerous chronic pain.With advances in cancer therapies an increas­ ing percentage of cancer-related pain is more characteristic of chronic pain. This is the case when treatment has been successful but the pain persists as a result of disease or therapy induced tissue damage and other factors.In these cases the assessment and treatment of cancer-related pain is similar to chronic pain.

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When cancer represents a progressive disease, the experience of pain becomes more linked with death. In the early stages only a few cancer patients report disruptive pain; however, this increases to where most pa­ tients with end stage disease experience severe and disruptive pain (Cleeland, 1984). This often creates a vicious cycle where anxiety and despair about one's own death contributes to the sensory and emotional experience of pain. Assessment of pain at this point may be confounded by the patient's coping strategies for death and their perception of the relationship between pain and the severity of the disease. Toward end­ stage disease the primary purpose of pain assessment is to establish pain control goals and monitor the effectiveness of pain management therapies. Consideration must be given to the patient's coping style and psychologi­ cal reaction to the issue of mortality. Pediatric Assessment

The assessment of cancer pain in children has only received limited attention. Grunau, Johnston, and Craig ( 1990) studied the neonatal facial and cry responses to invasive and non-invasive procedures in healthy newly born infants. They found that facial expressions (e.g., open mouth, raised brow, and squeezed shut eyes), short onset of crying, and duration of crying to represent the behavioral reactions of neonates. Although this may not transfer directly to pediatric cancer pain, it does suggest that behaviors observed in children that are associated with pain may include more facial changes and crying. There are some assessment techniques developed in pediatric cancer that may have some relevance to the assessment of cancer pain in chil­ dren. Lansky, List, Lansky, Ritter-Stern and Miller (1987) used parents to rate play activity in children that was useful in evaluating the child's re­ sponse to therapy. This procedure should also be useful in evaluating pain and the child's response to pain management. Another interesting and novel pain assessment procedure reported by Eland (1985) involved hav­ ing the child pick three color crayons to represent their worst, middle and least pain levels. The child was then given an outline of a human child and asked to identify with the appropriate color crayon where he or she hurt. Unfortunately no quantitative data was reported on reliability, validity, scoring, or standardization. Recently Carpenter (1990) presented acceptable reliability and validity data on a self-report measure of fear and pain in children ages 4 to 8. This self-report measure predicted actual clinical distress to an invasive medi­ cal procedure as measured by parents, clinical ratings and ratings by the phlebotomists as to whether the child's distress interfered with timely

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completion of the procedure. This scale is exciting because it utilizes the child's self-report to predict fear and pain. The direct application of this procedure to cancer pain and therapy needs empirical support; however, preliminary research by Carpenter suggests that self-report in children may be a valid measure of pain and the potential interference of pain on activity levels. Factors Affecting the Report of Pain

Numerous factors can influence the patient's report of pain. The clini­ cian should be familiar with the more frequently occurring factors since they can significantly affect how cancer patients communicate their pain. For instance, the patient's history can influence how pain is reported. Patients who have received support in the past from health care profes­ sionals for their pain problem and for requesting medication will be more inclined to admit to pain. Often cancer patients are reluctant to report pain because of beliefs that discourage disclosure (Cleeland, 1984). One study found that many can­ cer patients do not complain of pain because they believe that there is a social stigma attached to people who do (Jacox & Stewart, 1973). Other patients admit that they do not want to bother their doctor or distract him or her from their medical treatment. Our society also reinforces the notion that a good patient does not complain when in pain, and a complainer is one who has lost self-control. Unfortunately, health care professionals sometimes directly reinforce these beliefs (McCaffery & Beede, 1989). The nature of pain can also influence the patient's report. The patient with severe pain may be more motivated to admit to pain or request medi­ cations than patients experiencing mild to moderate pain. Yet, certain pain locations, such as rectal or genital, can discourage reports of pain because of personal embarrassment (Hardy, 1956). Conversely, patients experi­ encing significant interferences in mood and physical activity because of their pain may be more likely to communicate their experience. The stage of disease may also affect the report of pain. Abrams ( 1966) wrote an intriguing paper in which she observed that cancer patients are less likely to communicate to others as their disease progresses. She found that newly diagnosed patients were optimistic and hopeful concerning treatment and anxieties were lessened by direct answers to questions. As the disease advances, there is a change in what the patient desires to know and to whom they direct their questions. A fear of abandonment by the physician is managed by becoming compliant and noncomplaining. In the terminal stages, communication becomes minimal and support from oth­ ers is more important. Although Abrams did not address the issue of pain

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communication specifically, the points she raised certainly have many implications for cancer pain assessment. Other factors influenced in the pain report of pain patients that have been mentioned include neuroticism (Bond, 1976), level of awareness and education (Moses & Cividoli, 1966), depression and chronicity (Kremer, Block, & Gaylor, 1981), use of certain medications (Kramer, Block & Atkinson, 1983), desire to manipulate treatment (Ignelzi, Kremer, & Atkinson, 1980), and staff support of pain complaints (Kremer et al., 1983). Each of these factors should be considered in the assessment pro­ cess. CONCLUSION

Pain is very complex with diverse expressions that necessitate a multi­ dimensional approach to assessment. Although there are some similarities between chronic non-cancerous pain and pain associated with terminal conditions, there are factors that are unique to cancer pain that must be considered in the assessment process. A multidimensional approach to the assessment of pain that includes the evaluation of sensory, cognitive, af­ fective, behavioral and physiological components will provide the most useful clinical information (Ahles, Blanchard, & Ruckdeschel, 1983; Tearnan, Ward & Cleeland, 1989; see also Ahles & Martin, this volume). More research is clearly necessary in the area of pain assessment for the terminally ill. Still, research thus far has consistently supported the role of psychological factors in all types of pain. The purpose of assessment in terminal patients is to understand psychological factors that may be influ­ encing the experience of pain or the disruption in daily activities. It is strongly recommended that in addition to cognitive, emotional, behav­ ioral, sensory, and physiological factors the assessment of pain should include coping strategies, consequences, maintenance variables, onset and development, and factors such as the setting or meaning of pain. In this respect the assessment of pain associated with terminal illness is es­ sentially the same as in chronic pain. The treatment implications, how­ ever, may be very different. Comprehensive psychological and behavioral assessment will also likely yield valuable information that can facilitate nonpharmacological pain treatments that will enhance the patient's sense of control, quality of life, and pain management. Future research utilizing comprehensive, multidimensional assessment procedures will also be ben­ eficial in evaluating both psychological and medical treatment outcomes studies in cancer pain management.

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