Facilitating the use of noninvasive pain management strategies with the terminally ill.

The Hospice Journal

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

Facilitating the Use of Noninvasive Pain Management Strategies with the Terminally Ill Dennis C. Turk & Caryn S. Feldman To cite this article: Dennis C. Turk & Caryn S. Feldman (1992) Facilitating the Use of Noninvasive Pain Management Strategies with the Terminally Ill, The Hospice Journal, 8:1-2, 193-214, DOI: 10.1080/0742-969X.1992.11882725 To link to this article: https://doi.org/10.1080/0742-969X.1992.11882725

Published online: 21 Aug 2017.

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Facilitating the Use of Noninvasive Pain Management Strategies with the Terminally Ill Dennis C. Turk Caryn S. Feldman

SUMMARY. In this paper a number of issues that appear to tran scend the ran$e of noninvasive interventions described in this vol ume are examined. Specifically, we raise the important issue of bar riers to treatment. Among those discussed are patients,' their significant others,' as well as health care providers' conceptualiza tions of and biases regarding pain and pain control. We emphasize that it is important not only to focus on the details of the specific techniques described but also on how most effectively to present information. We note that it is important to customize any noninva sive intervention to the specific needs of the patient and their signifi cant others. We provide some suggestions as to how this might be accomplished. Finally, we discuss some attitudes and beliefs held by health care providers that may inhibit their use of the full range of noninvasive techniques that are available for managing pain. The primary intent of this volume has been to suggest that there are a number of noninvasive strategies that can be used in order to improve management of pain in the terminally ill. This is not to suggest that these approaches should be viewed as alternatives to opioid analgesics, which will continue to be the mainstay of treatment of moderate to severe pain. Dennis C. Turk is affiliated with the Department of Psychiatry and Pain Evalu ation and Treatment Institute, University of Pittsburgh School of Medicine. Caryn S. Feldman is affiliated with the Pain Evaluation and Treatment Institute, Presby terian University Hospital. Preparation of this article was supported in part by Grant ARNS38698 from the National Institute of Arthritis and Musculoskeletal and Skin Diseases and DE07514 from the National Institute of Dental Research. © 1992 by The Haworth Press, Inc. All rights reserved.

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NONINVASIVE APPROACHES TO PAIN MANAGEMENT

Rather, the papers describe a conceptual model (initial chapter by Turk and Feldman, Ahles and Martin, and Fishman) and assessment (Tearnan and Ward}, and noninvasive treatment approaches that follow from this model (Spira and Spiegel, McCaffery & Wolff). It is suggested that these noninvasive interventions can serve as adjuncts to traditional medical and pharmacological modalities for pain control. Other papers emphasized the importance of involving significant others and understanding their per spective (Warner) and emphasized the importance and empowering role of patient education (Rimer et al.). Specifically, the papers have suggested that pain is a multidimensional construct to which cognitive, affective and sensory factors contribute. In the initial chapter, Turk and Feldman described the important role that psychological variables such as self-efficacy, anticipatory anxiety, and perceived controllability play in pain perception. Moreover, Turk and Feldman described the potential of operant and respondent conditioning and observational learning to influence pain responses. Given the importance of the factors described above to modulate and exacerbate pain severity, a critical issue becomes how to assess these fac tors. Tearnan and Ward detail a number of approaches that have been developed and that can be used to assist the health care provider in evalu ating pain severity and some of the contributing psychological variables. Understanding of pain and the availability of assessment strategies should permit the development of treatment interventions that can be tar geted at the relevant contributing factors. Even though opioid analgesics can be effective in addressing the nociceptive or sensory component of pain, it is also important to address the psychological factors that can modulate and exacerbate pain. Moreover, there are a subset of patients for whom even the most potent narcotics do not provide total or even ade quate relief. Treatment strategies such as hypnosis, relaxation, psycholog ical support, and other pain control techniques can serve as important compliments to pharmacological preparations. In addition to psychological pain control strategies, McCaffery and Wolff describe a number of noninvasive physical modalities that can be used by health care providers and family members to improve the patient's comfort and reduce their pain. Simple techniques for reducing pain through ambulation and the use of touch, ice and heat can be extremely effective. To date only limited attention has been given to the important role of the terminal patient's significant others. Not only can significant others serve as important emotional supports, they can also assist the patient in pain control. Warner describes how significant others can be involved in

Dennis C. Turk and Caryn S. Feldman

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the patient's pain control. Moreover, Warner makes an important point of emphasizing the impact of the patient's pain on the significant other and the importance of considering the significant other's needs. Rimer et al., point out that part of the problem of inadequate pain relief from opioid analgesics may result from patients' failure to report on pain severity and failure to make use of medications in an appropriate manner. They review the number of factors that may contribute to patient non adherence to the recommended pharmacological regimens. They appro priately emphasize the importance of patient education. Throughout this volume, a number of themes have appeared. In the remainder of this paper we will summarize these and describe several areas that we believe are worthy of receiving greater attention and discus sion. PAIN ASSESSMENT

Failure to assess pain associated with terminal illness will lead to under utilization of existing pain management techniques. A number of pain assessment measures are available as described by Tearnan and Ward. We must be cautious and balance our tendencies to focus on assessing vari ables for which there are existing and valid measures against the need to examine what is truly important. There remain many areas in terminal illness that need to be assessed but for which no existing measures with appropriate psychometric properties have been established. This does not mean, however, that these areas should be ignored. Health care providers will have to develop their own methods when no appropriate measures are available. Pain is a subjective experience. The only way we know about a pa tient's pain severity is by their behavior, what they tell us or the behaviors that they display. Based on the overt expression of pain, physicians and nurses make inferences about the pain that the patient is suffering. At tempts to provide relief often follow from health care providers' extrapo lations of the patient's experience and are influenced by their own biases. Do health care providers, patients, and significant others agree about the extent of pain severity? Grossman et al. (1991) demonstrated good agree ment among cancer patients and health care providers when the level of pain was low to moderate (less than or equal to 4 on a 0-10 visual ana logue scale) but quite poor when the patient rated his or her pain as high (7-10 on the visual analogue scale). Ferrell, Ferrell, Rhiner, and Grant (1991) reported that significant others of cancer patients consistently rated the patient's pain as more severe than the patient. Interestingly, not only

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did caregivers rate the pain to be extremely distressing for the patient but they rated it as equally distressing for themselves. Patients may minimize symptoms that could reflect a worsening of their overall clinical condition. Many patients do not want to appear weak or fear narcotic addiction. Additionally, patients are usually not eager to con front their health care providers by indicating that they are not adequately relieving their pain. Behavioral observations may be a useful adjunct to self-report in evaluating patients who are trying to be stoical. Several re cent attempts to develop behavioral observation systems for patients with different terminal conditions have been developed (Ahles et al., 1990; Keefe, Brantley, Manual, & Crisson, 1985).

COPING RESPONSES Coping with pain is an attempt to mobilize efforts to resolve or mitigate the pain experience. Physical as well as emotional factors contribute to the pain experience. As has been acknowledged throughout this volume, a significant number of terminally ill individuals experience pain with which they must cope. Despite this fact, there has been little research investigating how they do so. When any individual experiences pain, he or she attempts to understand the cause and they try to cope with the noxious sensations. The concerns that patients and significant others have and the meanings they hold about the pain experienced are crucial to cop ing. In a recent study, Arathuzik (1991) developed a questionnaire de signed to assess patients' perceptions of the concerns that they have in relation to their pain experience. Self-report instruments such as this as well as structured interviews that cover the common concerns identified in this study may be of assistance in structuring information about patients' and significant others' concerns. A large range of coping responses have been reported for coping with pain. These may range from taking medication, to relaxation, to attempts to distract oneself, praying, asking help from others, altering body posi tions, and crying. Lazarus and Launier (1978) suggest that coping re sponses fall generally into four categories: direct action, inhibition of action, information seeking, and intrapsychic processes. It is important to acknowledge that no coping category or specific coping strategy can be viewed as adaptive or maladaptive. Rather, coping strategies may be more or less helpful to an individual at a particular point in time. Many of the papers in this volume have focused on teaching patients and significant others coping strategies that they can use in an attempt to alleviate pain. It is important to acknowledge that patients and significant


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others have a repertoire of coping strategies that they may employ sponta neously. Many of the coping strategies are quite similar to those that are taught by health care professionals. For example, in a study of metastatic breast cancer patients, 50% indicated that they tried to relax their muscles to alleviate pain and over 23% indicated that they applied heat or cold to the painful area. It is incumbent upon the health care provider to identify these coping efforts and to determine how helpful they have proven to be for the patient and significant other before teaching any new techniques. The health care provider may obtain this information by interviewing the patient or significant other. In addition, there are a number of published instruments designed to assess coping strategies that may be of use (e.g., Coping Response Checklist, Arathuzik, 1991; Ways of Coping Checklist, Folkman & Lazarus, 1980; Ways of Coping Checklist-Revised, Vitaliano, Russo, Carr, Maiuro, & Becker, 1985; Coping Strategies Questionnaire, Rosenstiel & Keefe, 1983). Any new skills being taught should be viewed as enhancing the patient and significant others' coping repertoire. Coping strategies that have been used and that have been proven to be beneficial (assuming that they have not been maladaptive or inappropriate) should be supported and not neces sarily replaced as these may serve as a basis for additional interventions. The health care provider may wish to make use of the material covered in this volume to improve upon the methods that are already being used, as well as complementing their coping repertoire by teaching patients and significant others new methods. When new skills are taught, the health care provider should be clear in explaining the rationale. He or she should elicit any reservations or prob lems that the patient or significant other may foresee. Concerns should he addressed and these may lead the health care provider to modify recom mendations. Even the most potent coping activities are destined to fail if the patient or significant other believes that they will not be effective or that he or she does not feel comfortable and competent to make use of the new skills. Another important point to keep in mind about coping is the distinction · between a deficiency in coping skills in contrast to a deficiency in use of skills. Many approaches to coping focus on teaching new skills to patients and significant others. This assumes (a) that the skills being taught are not already within the individual's coping repertoire (see preceding para graph) and (b) that once patients and significant others are proficient in the skills taught they will use them in their natural environment when re quired. Health care providers need to be especially cautious about making

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the second assumption. Because a patient or significant other demon strates their ability to make use of skills in a clinical setting is no guarantee that they will make use of these skills at home or when their pain begins or escalates. It is important not only to teach new pain management skills but to make sure the patient and significant other feels competent to perform these when not being directly supervised. These may be examined by role playing, practice both in the clinical setting and at home, and monitoring of the use of the skills. If possible, observing the use of these skills in the home environment is beneficial. TREATMENT BARRIERS

Patients often feel overwhelmed by their pain. Understanding what the pain means to each patient may reveal misconceptions and/or important existential concerns that can impede optimal comfort and pain control. What follows are some of the most frequently encountered sources of treatment interference, commonly held beliefs that may lead to resistance, and suggested strategies that the health care provider can use. Patients' and Significant Others' Conceptualizations of Pain, Nontraditional Approaches, and Mental Health Professionals

Patients hold beliefs about their pain, illness, health and the potential utility of any treatment regimen. These beliefs may be accurate or limited by misconceptions, distortions and self-perceptions. Significant others too have their own belief systems that may subtly, yet powerfully influence the patient's attitude towards treatment. The health care provider as well has beliefs and biases that may affect the patient's decision to comply with treatment recommendations. Although these beliefs can lead to resistance and other significant treatment barriers, many can be anticipated and uti lized in the therapeutic process. Health care providers should anticipate that patients will typically hold a unidimensional/sensory view of pain. That is, pain is directly propor tionate to tissue damage. Without somehow challenging or expanding upon this view, it may be futile to encourage the use of certain techniques (e.g., relaxation). A brief explanation of the multidimensional nature of pain will usually satisfy most patient's questions, and provide a rationale for the involvement of the psychologist (see paper by Ahles and Martin). Health care providers often become absorbed in the myriad of problems


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that terminally ill patients face and pain complaints become secondary and may inadvertently be ignored. Some patients may feel as though they are "crazy" (i.e., it's all in their head) for believing they have pain, since no one seems to be taking their complaints seriously. Patients may thus be exquisitely sensitive to the suggestion that they meet with a psychologist regarding their pain. Although they may not ask, many patients will won der why such a referral was made. When suggesting the possibility of psychology involvement, the health care provider might say something like the following: I know you are suffering quite a bit with your pain problem despite the doctor's best efforts at controlling it with drugs. I wanted to make you aware of some additional forms of pain management, with which you may be less familiar. More often then not, validation of suffering and emotional distress as a part of the pain problem usually leads to the patient's (a) acceptance or interest in learning more about a multidimensional view of pain and (b) acceptance of the role of nonphysician health care providers. In es sence, the primary health care provider serves as a "gatekeeper" to in volvement with other team members. The manner in which information regarding the role of these team members is provided may strongly influ ence the patient's attitudes towards these interventions. Not only is it important to overcome patient and significant other resis tance, but also resistance of health care providers to make use of nontradi tional, noninvasive approaches and referral to mental health professionals for pain control. Health care providers may be quite willing to request a psychological consultation or refer to a psychologist when they observe that a patient is depressed or particularly anxious. However, many health care providers who work with terminally ill patients believe that pain can be adequately controlled by appropriate prescribing and compliance of patients with opioid analgesics. These health care providers may not con sider the potential of the noninvasive approaches described in this volume. Some physicians are reluctant to call in outside consultations because they believe that "I can handle pain quite well." This confidence is less ·justified when patients and nurses are interviewed and observed. In a sense, a patient who continues to experience pain despite prescribed medi cation may be viewed by a physician as their failure. Some physicians are reluctant to admit to failure. Feelings of defensiveness by health care pro viders need to be subjugated to the desire to provide patients with the highest degree of comfort and thereby improving their quality of life. It is not uncommon for patients to be hesitant to pursue noninvasive

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strategies due to the manner in which the topic is first introduced. Typi cally psychology or physical therapy is presented as an ancillary service to medicine and seen as the treatment of last resort. Presented as such, it may convey to the patient that these other strategies are less important then medication, unlikely to be effective and merely an afterthought. It is our hope that the details described in the papers in this volume will serve to give credibility to the potential value of noninvasive approaches. Improved understanding of the nature of these approaches should serve to demystify them. Some patients are fearful that meeting with a psychologist, ostensibly for "pain management" will lead to discussions of their childhood and focus on the past. Again, a brief explanation of the role of the psycholo gist in the management of pain will usually suffice. Psychological inter ventions should be described as short-term, skills-oriented and focused on the here-and-now. In our experience, terminally ill patients are usually not only receptive to psychological involvement, they are often very apprecia tive of the opportunity to talk with someone who takes their distress about pain seriously. Pessimism The health care provider should anticipate that many patients will be lieve that non-pharmacological strategies "won't work." This pessimism may stem from a number of sources, including: (a) previous "failure" experiences, (b) feelings of being overwhelmed by the pain, and (c) de pression with pervasive negative cognitions. These obstacles may be over come if they are clarified and used in the therapeutic process. Determining the source(s) of the pessimism is usually a good first step. Questions such as "What makes you so sure it 'won't work?' " and "De scribe what you mean by 'won't work?' " will usually elicit the patient's thoughts. Sometimes patients will reveal that they have already been ex posed to physical therapy or relaxation and that their experiences were unsuccessful. It may be useful to examine the specifics of their efforts (i.e., exactly what did they try and what were their expectations). Usually this questioning will demonstrate problem areas to be addressed in treat ment (e.g., perfectionistic tendencies that lead to frustration and certain failure may be dealt with through cognitive restructuring). Determining "what went wrong" will help the astute health care pro vider avoid the repetition of mistakes and clarify future treatment plans. Hearing the details of previous efforts typically reveals "what went wrong" without much probing. For example, it is not uncommon to hear a patient say "I've already listened to a relaxation tape and it didn't


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help." Usually there are reasonable explanations as to why previous ef forts were unsuccessful. The patient may never have been given the op portunity to work with a "live" professional who was trained in the use of relaxation techniques with pain patients. In this sense, empathizing with the patient's struggles and validating their failure experiences as under standable may serve to strengthen the therapeutic relationship and build hope. A patient's pessimism may reflect an underlying mood disturbance. As discussed by several authors throughout this volume, there is an important association between mood and pain perception. Although sadness and grief are typical and adaptive reactions in a terminally ill population, the health care provider should be alert to those characteristics that typify a major affective disorder. A patient who exhibits a pervasive and sustained depressed mood, a loss of interest or pleasure in activities, psychomotor agitation or retardation, sleep disturbance, feelings of worthlessness or excessive guilt, difficulty concentrating, thoughts of suicide or appetite disturbance may benefit from a psychiatric referral for consideration of pharmacotherapy. Mood disturbances of a lesser degree are typically ame nable to cognitive-behavior therapy, as described by Fishman in this vol ume, and may indirectly be improved through the use of all of the non invasive techniques in this volume. Religious Attitudes and Beliefs

We have also frequently encountered individuals who are hesitant to pursue psychological techniques due to their religious beliefs. Some pa tients believe that the use of non-invasive strategies place faith in the individual instead of God and is thus contrary to their religious beliefs. Clearly, this is a sensitive issue and must be explored in a delicate, re spectful manner. Some patients are more receptive to psychological tech niques after they are educated regarding the multidimensional nature of pain. Although it is certainly advisable to use the person's religious/spiri tual faith in the treatment design, there are those patients whose beliefs will not be altered through education. For these patients, encouragement of the use of coping mechanisms such as prayer and conversations with clergy is most appropriate. Prayer can be viewed as a form of relaxation, a distractor, and as a method of stress reduction. The use of spiritual beliefs in imagery/pain transformation strategies can be extremely powerful. For example, one terminally ill woman who we treated imaged a scene where she was skiing at her favorite vacation spot. She was encouraged to view this mountain scene while focusing on her deeper spiritual feelings. She was encouraged to make the connection

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between nature and God and the snow surrounding her. She then imaged the snow as a gift from God that had soothing, healing properties. Allow ing herself to apply this soothing powerful gift from God to her area of pain brought about feelings of peace, serenity and pain relief. Using imag ery that is most personally meaningful to the patient will elicit the most potentially powerful results. Indeed, it is not uncommon to have patients begin crying when working on spiritual imagery. Most often these tears are from relief and do not necessarily indicate a problem. Assessing the patient's spiritual beliefs may be done by asking ques tions like "Where does your strength come from?" or "From where do you get support?" Patients that are nonreligious may reject the notion of God, but typically believe in something. Discovering what that something is and using it in the treatment process can be a creative, intimacy foster ing and productive endeavor. For example, we worked with a terminally ill patient who did not have a strong religious faith and expressed disdain when issues of spirituality arose. It became clear that he found great strength from his bond with his spouse, and that he derived much faith and hope from that union. The patient was encouraged to focus on the strength of that bond and use imagery associated with it as a form of spiritual support. He found this to be extremely reassuring and calming and brought about an even closer relationship with his wife. Cognitive Limitations

Another potentially significant treatment barrier involves patient cogni tive deficits and limited intellectual resources. These limitations may be premorbid or secondary to factors such as narcotic medication, radiation, or brain metastases. The most noble of treatment plans may be signifi cantly impeded by confusion, poor concentration, limited comprehension and memory deficits. A comprehensive pain assessment (e.g., Ahles and Martin, Fishman, this volume) will likely reveal the etiology of these problems and treatment strategies may become self-evident. For example, attentional deficits and poor concentration may be secondary to a patient's anxieties about dying and leaving family members behind. It is not un usual for patient's anxieties to be related to "unfinished business" that may become the focus of treatment. Clearly, the patient's primary con cerns should dictate the course of treatment. Anxiety may be related to the meaning of pain (e.g., fear of death), or a more global, well ingrained style of reacting to stress. When such anxiety does not permit a focaliza tion of issues in therapy, psychopharrnacological treatment may be neces sary. Audiotapes for relaxation can be useful, even with patients who have


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significant cognitive impairment. Tapes require less effort and concentra tion on the patient's behalf and often have positive effects. However, in our experience far too many patients are given audiotapes as a substitute for treatment. Tapes are best used as an adjunct to treatment. A surprising number of patients do not learn to relax with tapes, discontinue their use and conclude that relaxation is ineffective as a pain management strategy. We agree with Rimer et al. 's (this volume) suggestions to use multiple educational modalities and have content that is simple, straight-forward and relevant to the particular circumstances of the patient. Involvement of the family in the problem solving process can increase patient interest, enthusiasm, comprehension and compliance. And, as sev eral papers in this volume suggest (e.g., Warner, McCaffery and Wolff, Rimer et al.), many noninvasive strategies are equally helpful to family members. We have had success collaborating with some family members who served as paraprofessionals. For example, one of our patients with lung cancer and significant respi ratory problems tended to be lethargic during the hours the psychologist was available for relaxation training. During the evening hours he tended to become agitated and ruminatively focus on his breathing. The patient was quite distressed regarding his difficulty breathing, noticed his pain increased during these times and was motivated to develop coping skills. The patient's spouse was taught basic principles of relaxation and various breathing and imagery exercises. She was given a number of handouts to review with her husband, and was encouraged to come to the psychologist for troubleshooting. This format worked quite well for both the wife and the patient. His wife in particular was relieved to learn productive, con crete methods for helping her husband. This approach is typically most appropriate with family members who are highly motivated, intelligent and do not have significant symptoms of distress themselves. INTRODUCING NONINVASWE INTERVENTIONS OR REFERRALS Once the health care provider decides to introduce new information, he or she should be clear in explaining the rationale and the mechanisms by which the pain control strategies are believed to have their effect. They need to observe the patient and significant other's reactions (both verbally and non-verbally) to new information. They should attempt to identify any concerns. Since some of the less traditional techniques (e.g., hypno sis) or referral to a specialist (e.g., psychologist) may be met with resis tance or skepticism, these feelings should be addressed.

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Even if not raised by the patient or significant other, it may be helpful to simply note that: Some patients are concerned about a referral to see a psychologist (about hypnosis, using ice massages, etc.). Although this may not have crossed your mind let me explain that this referral is being made not because I don't believe that your pain is real or that you are exaggerating, but rather because psychologists have special exper tise in teaching some pain control techniques. I believe that some of these strategies may be helpful for you. Do you have any concerns about seeing a psychologist (being taught hypnosis, using ice mas sages)? Some patients worry that if they receive some benefits from treat ments provided by a psychologist, then some will question the legiti macy of their pain. Let me assure you that there is no question that the pain you experience is real. However, we know that a number of factors affect our awareness of pain. Physical factors can be affected by stress, the focus of our attention, and our worries and concerns. The techniques that you will learn from psychologists should help you control stress more effectively and lead to greater pain control. These techniques will not affect the pain medication that you are receiving but rather, I believe will serve as a potentially beneficial supplement. Let me tell you about our current understanding of pain. The pain we experience results from signals from our bodies that travel along nerves until they reach the brain where these signals are identified. Within the spinal cord and in the brain there are a number of gates through which these signals have to pass on their way to the region of the brain where pain is recorded. Usually these gates are closed and we do not experience any pain. It is only when these gates are open that the pain signals can reach our brains and thus we feel the pain. A number of factors can serve to open the gates including physical injury, excessive activity and also emotional distress and focusing on pain. Similarly, there are a number of factors that can close the gates. These include medication, heat, cold, relaxation, rest, posi tive emotions, adaptive attitudes, appropriate levels of activity and distraction. You already know about the role of physical factors in causing pain - opening the gate, but did you know that emotional distress and focusing on pain can increase pain? You also know that medication can reduce the pain, and occurs by


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the drugs closing the pain gates. However, did you know that we can also control the pain gate by distractions, relaxation, and tempera ture? Let me use an example to show you how distraction can close the gate. Many football players receive severe injuries during the course of a game. Despite these injuries they often continue to play and it is only in the locker room after the game that they feel the pain. During the game they were so involved in the activity and excitement they were not even aware of the pain. The pain gates were closed but when the game is over and they focus more on their bodies, the gates open, and they feel pain. Does what I have described make sense to you? Can you think of any examples when your thoughts or mood opened or closed the pain gates? For example, some patients have noted that when their pain is bad they become irritable and they notice that when they get irritable and upset their pain seems to get even worse. Has this ever happened to you? In light of everything we've talked about, what do you think about the idea of a referral to a pain psychologist? Statements such as those described above may help dilute defensiveness of the patient or significant other. They may also reduce their reluctance to question (fear of alienation), or convey disappointment (implying criti cism) to a health care provider upon whom they may feel dependent. IMPORTANCE OF NONSPECIFICS

There is a tendency to emphasize the specific details that comprise any therapeutic intervention, that is, the nuts-and-bolts of how to teach pa tients and significant others new skills. Perhaps as important, if not more important, then specific details is how information is presented. The health care provider needs to be as concerned about the process as well as the content of their communications and interventions. The patient or sig nificant other's perspective needs to be considered before introducing any new information. Some understanding of the patient's and significant oth er's attitudes and beliefs about pain, the patient's medical condition, as well as coping resources and support systems is essential. This back ground information should guide decisions regarding how best to intro duce new pain control modalities. It is incumbent upon health care givers that they learn something about the attitudes, beliefs and fears of their patients regarding their disease,


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treatment, as well as about the availability of resources and their desire to exercise control (Spencer, 1991 ). • • • •

How has the patient been coping with his or her pain? What has he or she tried? What have they heard about different pain control strategies? What are their concerns about taking narcotics and using other pain control techniques? • How comfortable are they talking about their pain? • How will they and their significant others respond to specific over tures regarding pain control?

These are some of the questions that should be considered by the health care providers. Feelings of little control are a common source of anxiety and depression among terminal patients and their family members who often feel they can do little to influence the outcome of their treatment or disease course. In our desire to give more control to them, it is important that we do not expect more than the patient or significant other can deliver. In short, we need to give the patient and significant other the opportunity to participate in pain treatment; however, we need to be cautious in making excessive demands. Health care providers must be careful not to use jargon or to provide overly complex descriptions and explanations. Again, the key is to know something about the patient and to observe verbal and nonverbal reac tions. If the health care provider is going to teach a new pain control strategy, he or she should make sure that the patient or significant other learns how to perform the pain control strategy, feels comfortable with using the tech nique, and feels competent to carry it out in the home environment or when the health care provider is not present to supervise. Some questions might be posed to patients or significant others. • Have you ever used similar pain control techniques before? • If yes, how beneficial was this technique? • Do you have any concerns about your ability to use this pain control technique? • Do you realistically believe that you will be able to make use of this pain control strategy? • How certain are you that you will be able to make use of this pain control strategy?


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• How hard do you think that it will be to use this pain control tech nique? • How effective do you think this technique will be for you (your significant other)? • Can your foresee any problems in making use of this technique? • How likely do you think this (these) problem is to occur? • What could you do if such a problem arises? • Is there anything that worries you about using this technique? • Are you concerned about any of the effects of your pain medication? • Tell me, what is it that you are supposed to do? • What will you do if you forget how to use this technique? When discussing the use of a new strategy, it may be helpful to indicate that this is only one of a range of alternatives that may be beneficial. The health care provider may suggest that he or she will work with the patient and significant others to identify the best set of techniques, ones that will be most helpful to the individual patient. This approach is helpful as it suggests that there are a whole range of strategies that are available. Thus, if the patient has difficulty using one there is no implied message that there is little else that can be done. As we noted in our introductory chap ter, collaboration between health care provider and patients and signifi cant others is important. The message to the patient and significant others is that we (the health care provider) and they will work together to develop a pain control plan that best meets their needs and circumstances. A caution about presenting an overly optimistic picture is in order. We believe that the noninvasive techniques described can be beneficial in alle viating some but not all of the patient's pain and discomfort. Creating too high an expectancy is likely to be setting the patient up for failure. It is helpful to acknowledge to the patient that although the health care pro vider has faith in the potential of the different strategies, total pain relief is not the goal; rather improved comfort and functioning. Realistically, even if they make use of the various techniques there will be times when these strategies may not be effective. However, at other times these strategies or other pain control techniques will promote relief and greater comfort. The patient should be encouraged to be flexible in trying different combina tions of pain control techniques and recycle them in order to find what is best for them at any point in time. In a sense, forewarned is forearmed. Anticipation of potential setbacks can serve to inoculate the patient against discouragement that inevitably will arise (Turk, Meichenbaum, & Genest, 1983). Attention must be given to each individual patient throughout the

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course of their illness. Different strategies and techniques may be required at different points in time. Timing and pacing of the use of different ap proaches will require careful attention to patients and their significant oth ers. Such techniques may be inappropriate at one point yet prove to be of great benefit at others. Similarly, some techniques may be readily ac cepted by some patients but be rejected out of hand by others. Health care providers must continually reevaluate the patient and his or her reports of pain throughout the course of the illness. We cannot assume that how an individual responds at one point in time will predict subsequent respond ing.

SELECTION OF TREATMENT MODALITIES There are no simple panaceas or "canned" packages that can be recom mended for use with every patient. All of the techniques described in the chapters in this volume can be effective but it is important to realize that they need to be individualized to meet the needs of each patient. In some sense, more important than any technique is the perspective that we have about pain control. If the health care provider believes that only patho physiological factors contribute to pain, that is, that there is a one-to-one relationship between tissue pathology and the report of pain, then they will pay little attention to the important contribution of psychological fac tors. If they feel that drug treatments are all that is available, they will not make use of any of the noninvasive techniques described in this volume. If on the other hand, they come to view pain as a perception influenced by cognitive, affective, and behavioral components as well as sensory ones, then they will be open to trying nontraditional interventions. Some patients are interested in acquiring a great deal of information and playing an active role in the treatment process (e.g., Cassileth, Zupkis, Sutton-Smith, & March, 1980), whereas others may desire information but prefer to abrogate responsibility for treatment decisions to health care providers (Sutherland, Llewellyn-Thomas, Lockwood, Tritchler, & Till, 1989). Still others may not wish to have a great deal of information or to be involved in decision making (Silk, 1981). We should not assume that all patients or significant others want to participate in pain control and the responsibility that follows from having control. One reason that patients and significant others may not wish to accept responsibility is that blame comes from failure. If the patient does not achieve adequate relief, is it because they have not appropriately done what they have been taught or that they made the wrong choice among the bewildering array of options offered? For some, reliance on a health care provider is a relief, because


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they see the health care provider as an expert. For some, belief that a powerful other who is all-knowing has the ability to control their pain may be comforting. Relief of the burden of responsibility is often fostered by the patient viewing medicine as beyond their ability to comprehend. In short, people differ in the amount of information they desire in medical settings (Whitcher-Alagna, 1983) and individual preferences should be taken into account when planning care for patients. Several studies have reported that home hospice patients had signifi cantly more persistent pain than hospital-based patients (Austin, Eyres, Hefferin, & Krasnow, 1986; Ferrell & Schneider, 1988; Morris et al., 1986). There are a number of reasons why home hospice patients may have poor pain control. These include non-compliance with pain control recommendations due to fear of addiction, feelings of hopelessness, knowledge deficits, desires to maintain control, and avoidance of unde sired side effects. For example, it has been observed that only 55.2% of home hospice patients adhered to their pain medication regimens (Austin et al., 1986) and 50-83% of cancer patients reduced their prescribed analgesics when discharged home (Parkes & Parkes, 1984; Dorrepaal, Aaronson, & Van Dam, 1989). A hallmark of successful pain control will be flexibility. A great amount of trial-and-error is required to develop effective approaches that meet the ongoing and changing needs of each individual patient. SOCIAL SUPPORTS Gil, Ginsberg, Muir, Sykes, and Williams (1990) reported lower doses of opioids were required for hospitalized patients who were highly satis fied with their social supports. This finding is consistent with a Kulik and Mahler's (1989) study that demonstrated that coronary-bypass patients with more spousal support required less post-operative pain medication. Although such research suggests the importance of social support, we must be cautious in generalizing as these studies did not make any de mands upon the significant others. The construct of social support seems a simple one, however, support may be in the eye of the beholder. Certain kinds of "support" may be detrimental and distressing. For example, family members and friends who believe that they are being supportive by providing unswerving opti mism. This may be done in an attempt to distract the patient when he or she begins to express distress or worrisome thoughts about his or her con dition. Excessive attempts to be cheerful, optimistic and reassuring and minimizing the problems and worries may contribute to the patient's dis-

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tress and desire to talk honestly about his or her plight (Peters-Golden, 1982). The health care provider might have to explain to significant others that verbalizing anxieties, fears, guilt, and anger may help patients clarify their feelings and obtain advice for coping with distress (Siegel, 1990). Comfort is a high priority for significant others of terminally ill pa tients. Family members and friends are the primary source of support to terminally ill patients and they bear the greatest responsibility for provid ing physical care in the home. They are not passive observers, but active participants who play a vital role in pain treatment. Many families may feel the pressure to assume the care of the terminally ill patient at home but while not feeling fully equipped to provide it. In one study (Rose, 1976), a majority of families indicated that they needed more information about providing home care to terminal patients in areas that required ex pertise and judgments, pain control as well as physical aspects of care. Although many significant others indicate that they wish to be involved in the care of the patient, for patients with terminal conditions, significant others may be overwhelmed by the physical as well as psychosocial de mands. The health care provider must be careful not to add to the task requirements of a significant other who already feels drained. Caregiver burden has not been given sufficient attention (Wortman, 1984). Not all significant others can or are willing to accept responsibility for greater assistance in the patient's pain control. The health care providers must be sensitive to the significant other's situation and be flexible in how and how much responsibility to transfer to them. The health care provider should assess the needs, beliefs, attitudes, desires, and resources of significant others as well as the patients. A care giver burden scale specifically designed to measure family burden associ ated with caring for a loved one in pain has been developed (Robinson, 1983). This instrument consists of 13 items covering such areas of burden as time demands, work adjustment, financial strains as well as feelings of being overwhelmed, confined, and distressed. This instrument may be useful to help health care providers target areas of perceived burden and to help them decide on how best to involve the significant others in pain control. Ferrell, Grant, Rhiner, and Cohen (in press) have developed an open ended interview for significant others called the Family Pain Survey. This tool might be of use to assist the health care providers in talking with significant others about their views, conceptions, and perhaps misconcep tions about pain control. Once these are identified, the health care pro vider can address issues, concerns, and any misconceptions.


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WHY HEALTH CARE PROVIDERS MAY NOT MAKE USE OF INFORMATION IN THIS VOLUME

A number of strategies, guidelines, and suggestions for making use of noninvasive pain control strategies have been covered through this special issue. A particular question of importance concerns how likely health care providers who have examined each of the papers is to make use of any of the suggestions or recommendations. There is a large gap between knowl edge, intentions, and action. We ask the reader to pause for a moment and consider: • Are the results of reading this volume, with its many suggestions for enhancing patients' pain control, likely to change the way I relate to and work with terminally ill patients and their significant others? • Moreover, what would it take for me to change my usual way of dealing with my patients to increase the likelihood of improved pain control? What are some of the impediments to your use of the materials and recommendations included in this book? • It's too complicated. • Analgesic medications are sufficient to alleviate pain, patients should take them as recommended. • It won't work with my population. They are too old, too sick, too uneducated, etc. • I don't have time. • I'm not a psychologist, psychiatrist, or physical therapist, I haven't been trained to do these things. We believe that many of the techniques and strategies described in this volume are relatively simple and they can readily be used without special ized training. Some of the techniques do require consultation with a spe. cialist. In these cases it is important for health care providers to be aware generally as to what is involved so that they can explain it to patients and significant others who they wish to refer or make a request for consulta tion. This knowledge may increase the likelihood that patients and signifi cant others will accept the noninvasive approaches that may be used by outside consultants. There is no question that some of the techniques described do require the health care provider's time. However, the initial time spent teaching

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different techniques may reduce additional time required for patients and significant others during the course of the disease. Implicit in many of the papers is that treatment will be offered on an individual basis. Many of the techniques discussed can also be presented in a group format especially for patients who are not in the terminal stage of their illness. Groups have the added benefits of efficiency and of peer support from others in similar circumstances. A number of studies have been reported in which terminally ill patients and significant others have been treated successfully in groups that made use of many of the coping strategies described in this volume (e.g., Cunningham & Tocco, 1989; Heinrich & Schag, 1985; Spiegel & Bloom, 1983; Telch & Telch, 1986).

The techniques and strategies do not need to make great demands on patients and significant others. They can be presented in simple and abbre viated ways customized to patient characteristics. Recall that we empha sized the process and content of teaching different pain control strategies. The health care provider must be aware of the characteristics and limita tions of his or her population and modify the information accordingly. As we noted, although analgesic medication will likely continue to be the primary method of pain control, these strategies and techniques de scribed can serve to extend the range of options and thereby supplement pharmacological interventions. There are no panaceas or strategies that will be 100% successful for all patients and significant others 100% of the time. The health care provider must be flexible and as open to the use of noninvasive approaches as they are to the use of analgesic medication. Our ultimate goal for this volume has been to sensitize health care pro viders who work with terminally ill patients with pain to the range of noninvasive strategies that are available to improve pain control and thereby the quality of lives of terminal patients. We have also emphasized the importance of the health care provider and his or her relationship with the patient. No pain control strategy will be effective if not presented to the patient or significant other in a manner that is acceptable to them. REFERENCES Ahles, T.A., Coombs, D.W., Jensen, L., Stukel, T., Maurer, L.H., & Keefe, F.J. (1991 ). Development of a behavioral observation technique for the assess ment of pain behaviors in cancer patients. Behavior Therapy, 21, 449-460. Arathuzik, D. (1991 ). Pain experience for metastatic breast cancer patients. Un raveling the mystery. Cancer Nursing, 14, 41-48. Austin, C., Eyres, P.J., Hefferin, E.A., & Krasnow, R.W. (1986). Hospice home care pain management: Four critical variables. Cancer Nursing, 9, 5865.


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Cassileth, B.R., Zupkis, R.V., Sutton-Smith, K., & March, V. (1980). Informa tion and participation preferences among cancer patients. Annals of Internal Medicine, 92, 832-836. Cunningham, A.J., & Tocco, E.K. (1989). A randomized trial of group psy choeducational therapy for cancer patients. Patient Education and Counseling, 14, 101-104. Dorrepaal, K.L., Aaronson, N.K., & Van Dam, F.S.A.M. (1989). Pain experi ence and pain management among hospitalized cancer patients. Cancer, 63, 593-598. Ferrell, B.R., Ferrell, B.A., Rhiner, M., & Grant, M.M. (1991, February). Fam ily factors influencing cancer pain management. Paper presented at the First Asian Pacific Symposium on Pain Control, Sydney, Australia. Ferrell, B., Grant, M., Rhiner, M., & Cohen, J. (in press). Pain as a metaphor for illness: Cancer care givers experience of pain. Oncology Nursing Forum. Ferrell, B.R., & Schneider, C. (1988). Experience and management of cancer pain at home. Cancer Nursing, 11, 84-90. Folkman, S., & Lazarus, R.S. (1980). An analysis of coping in a middle-aged community sample. Journal of Health and Social Behavior, 21, 219-239. Gil, K.M., Ginsberg, B., Muir, M., Sykes, D., & Williams, D.A. (1990). Pa tient-controlled analgesia in postoperative pain: The relation of psychological factors to pain and analgesic use. Clinical Journal of Pain, 6, 137-142. Grossman, S.A., Sheidler, V.R., Swedeen, K., Mucenski, J., & Piantadosi, S. (1991). Correlation of patient and caregiver ratings of cancer pain. Journal of Pain and Symptom Management, 6, 53-57. Heinrich, R.L., & Schag, C.C. (1985). Stress and activity management: Group treatment for cancer patients and their spouses. Journal of Consulting and Clinical Psychology, 53, 439-446. Keefe, F.J., Brantley, A., Manuel, G., & Crisson, J.E. (1985). Behavioral as sessment of head and neck cancer pain. Pain, 23, 327-333. Kulik, J.A., & Mahler, H.1.M. (1989). Social support and recovery from sur gery. Health Psychology, 8, 221-238. Lazarus, R.S., & Launier, R. (1978). Stress-related transactions between person and environment. In L.A. Pervin and M. Lewis (Eds.), Perspectives in inter actional psychology (pp. 287-327). New York: Plenum Press. Morris, J.N., Mor, V., Goldberg, R.J., Sherwood, S., Freer, D.S., & Haris, J. (1986). The effect of treatment setting and patient characteristics on pain in terminal cancer patients: A report from the National Hospice Study. Journal of Chronic Disease, 39, 26-35. Parkes, C.M., & Parkes, J. (1984). Hospice versus hospital care-reevaluation after 10 years as seen by surviving spouses. Postgraduate Medical Journal, 60, 120-124. Peters-Golden, H. (1982). Varied perceptions of social support in the illness expe rience. Social Science and Medicine, 16, 483-491. Rose, M.A. (1976). Problems families face in home care. American Journal of Nursing, 76, 416-418.

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Robinson, B. (1983). Validation of a caregiver strain index. Journal of Gerontol ogy, 38, 344-348. Rosenstiel, A.K., & Keefe, F. (1983). The use of cognitive coping strategies in chronic low back pain patients: Relationship to patient characteristics and cur rent adjustment. Pain, 17, 33-44. Siegel, K. (1990). Psychosocial oncology research. Social Work in Health Care, 15, 21-43. Silk, A. (1981). The struggle of Andrew Silk: A young man confronts cancer. The New York Times Magazine, Oct 18, 33-36, 92, 94-95. Spencer, J. (1991). Caring for the terminally ill person with pain, at home. Can cer Nursing, 14, 55-58. Spiegel, D., & Bloom, J.R. (1983). Group therapy and hypnosis reduce meta static breast carcinoma pain. Psychosomatic Medicine, 45, 333-339. Sutherland, H.J., Llewellyn-Thomas, H.A., Lockwood, G.A., Tritchler, D.L., & Till, J.E. (1989). Cancer patients: Their desire for information and partici pation in treatment decisions. Journal of the Royal Society of Medicine, 82, 260-263. Telch, C., & Telch, M.J. (1986). Group coping skills interaction and supportive group therapy for cancer patients: A comparison of strategies. Journal of Con sulting and Clinical Psychology, 54, 802-808. Turk, D.C., Meichenba·Jm, D., & Genest, M. (1983). Pain and behavioral medi· cine: A cognitive.behavioral perspective. New York: Guilford Press. Vitaliano, P.P., Russo, J., Carr, J.E., Maiuro, R.D., & Becker, J. (1985). The Ways of Coping Checklist: Revision and psychometric properties. Multivari ate Behavioral Research, 20, 3-26. Whitcher-Alagna, S. (1983). Receiving medical help: A psychosocial perspective on patient reactions. In T.A. Wills (Ed.), New Directors in helping, Vol. 3 (pp. 131-161). New York: Academic Press. Wortman, C.B. (1984). Social Support and the cancer patient. Cancer, 53, 23392360.

The use of urinary catheters in terminally ill cancer patients.

Assessment of the terminally ill patient with pain: the example of cancer.

Resuscitation of the terminally ill.

Resuscitation of the terminally ill.

Resuscitation of the terminally ill.

Involvement of families in pain control of terminally ill patients.

[Is management of analgesia correct in terminally ill patients?].

Palliative care for the terminally ill.

Experience with a hospice-care program for the terminally ill.

Barbiturates in the care of the terminally ill.

Resuscitation of the elderly and the terminally ill.

Anesthetic management during labor and delivery of a multiparous patient terminally ill with metastatic breast cancer.

The question of disclosing the diagnosis to terminally ill patients.

Interpersonal aspects in the care of terminally ill patients.

Terminally ill patients as customers: the patient's perspective.

Opioid needs of terminally ill patients with gynecologic malignancies.

The impact of loneliness on the relationship between depression and pain of Hong Kong Chinese terminally ill patients.

Death 1977: help for the terminally ill and their families.

Psychosocial adjustment of children with a terminally ill parent.

Hospice or rehabilitation hospital? Alternatives for the terminally ill.

Hospices for terminally ill patients. The California experience.

The metaphysical combat with death in the terminally ill and the psychedelic trail.

Palliative sedation at home for terminally ill children with cancer.

Financial help for terminally ill patients.