The Hospice Journal
ISSN: 0742-969X (Print) (Online) Journal homepage: http://www.tandfonline.com/loi/ippc19
Involvement of Families in Pain Control of Terminally Ill Patients Jan Earl Warner To cite this article: Jan Earl Warner (1992) Involvement of Families in Pain Control of Terminally Ill Patients, The Hospice Journal, 8:1-2, 155-170, DOI: 10.1080/0742-969X.1992.11882723 To link to this article: https://doi.org/10.1080/0742-969X.1992.11882723
Published online: 21 Aug 2017.
Submit your article to this journal
Citing articles: 1 View citing articles
Full Terms & Conditions of access and use can be found at http://www.tandfonline.com/action/journalInformation?journalCode=ippc20
Involvement of Families in Pain Control of Terminally Ill Patients Jan Earl Warner
SUMMARY. Pain associated with terminal illness is an extremely stressful problem for the patient as well as family members. Helping family members cope increases their effectiveness as caregivers and improves their own quality of life. Conversely, improving the pa tient's ability to cope decreases stress on other family members. Optimal treatment of pain in the terminally ill may be conceptual ized and administered from a family perspective. Methods for help ing families of terminal pain patients cope are organized around a theme of enhancing feelings of control and self-efficacy. Control over pain and related problems may be maximized by providing education, improving decision making and assertiveness skills, and by teaching specific techniques for pain and stress management, in cluding proper analgesic use, progressive relaxation, imagery, dis traction techniques, and time management. These techniques are de scribed from a family perspective in this paper.
INTRODUCTION Family support has been shown to be an important factor in the treat ment of chronic pain (Jamison & Virts, 1990). Turk, Flor, and Rudy (1987) provide an extended review on the interdependency between chronic pain and families. Ventafridda (1989) and Ventafridda, Selmi, DiMola, Tamburini, and DeConno (1987) conclude that involvement of the family is essential for optimal treatment of the cancer pain patient. Although most empirical research in this area is in early stages, the avail. able research indicates that involving the family in treatment is of critical importance for optimal care of the terminally ill patient as well. Family members are clearly in a unique position to provide the patient with en couragement and assistance in participating in the wide variety of noninJan Earl Warner is affiliated with Purdue University. © 1992 by The Haworth Press, Inc. All rights reserved.
155
156
NONINVASIVE APPROACHES TO PAIN MANAGEMENT
vasive interventions for pain and related problems described throughout this volume. Jevne (1990) found that among 192 referrals of oncology patients for counseling, pain control was among the most frequent referral concerns, and lower levels of perceived support were associated with higher levels of depression, anger and stress in family interactions. Individual and fam ily counseling was associated with the likelihood of symptomatic im provement. Involvement of family members is also essential as they are at increased risk for many adjustment problems and in some cases psychiatric disor ders. Pain is frequently associated with advanced disease. Holland (1989) discusses the increased risk for symptoms of anxiety among cancer pain patients and their family members and makes suggestions for intervention. Watson and Swensen (1991) reviewed the literature and present empirical evidence that in families affected by cancer, children and spouses experi ence increased affective distress, behavior problems and health problems as well as decreased quality of life. They conclude these difficulties ap pear to be related to changes in role status and perceived loss within the family. Mor, Guadagnoli, and Wool (1987) note that increased pain in cancer patients is positively related to increased emotional and financial burden within the family. Since family members are at increased risk for stress related problems, they should routinely be assessed for emotional distress. The use of mal adaptive coping techniques such as excessive withdrawal, needs to be monitored. It is important to reassure family members that feelings of distress are often experienced by family members of terminally ill pa tients. Family members, particularly primary caregivers of home care pa tients, can be taught active, adaptive stress management techniques as preventative measures. This should improve their ability to cope with their own stress and will also help them more effectively care for the cancer pain patient. Family members generally express primary concern for the well being and comfort of the patient. Family members often note that they would feel better if they could play an active role in helping the patient cope. Conversely, terminally ill patients are often more concerned about the distress of family members than themselves. Terminal pain patients fre quently present questions about how to help their spouse or children cope as primary concerns. Therefore, helping any member of the family should have positive effects on other family members. Block (1987) proposes a family systems perspective of coping with illness, and applies this view to
Jan Earl Warner
157
specific health problems including pain syndromes and cancer. Family systems theory views the etiology of disorders as a function of interactions within the family unit, rather than a disorder specific to the "identified patient." Therefore, the optimal target of diagnosis and treatment is the family unit. Such a conceptualization may be useful in the treatment of the terminal pain family. It is difficult to separate care for family members and care for the patient, especially when the care is provided in the home. It is particularly distressing to be a family member of a terminal patient who has unrelieved pain. Relationship problems within the family are frequent sequelae of termi nal illness. This is most likely due to the rapid changes in role status within the family due to changes in the functional ability of the terminal patient and financial demands imposed by the illness. Wellisch, Lands verk, Guidera, Pasnau, and Fawzy (1983) found a 32% rate of significant family relationship impairment in families with a family member receiv ing home care for cancer. In a group of 58 terminal cancer pain patients, Dobranz, Burns, and Oden (1989) observed that the most frequently iden tified psychosocial problem was patient-family-caregiver adjustment, present in 67% of cancer pain families. Turk, Meichenbaum, and Genest (1983) assert that the feeling of Joss of control is a very important factor in the pain experience in general and cancer pain in particular. In support of this assertion, Dalton and Feuer stein (1989) found that in a group of 27 cancer pain patients, concern about loss of control was by far the largest factor endorsed on a factor analytically derived pain profile. Turk and Rennert (1981) have proposed an intervention program for the treatment of cancer pain that emphasizes enhancement of the patients' feeling of self-control and self-efficacy. Increasing patients' "sense of control" is a central factor in the ability to cope with pain effectively. Therefore, facilitating a sense of control and self-efficacy in patients and family members will be used as a central organizing theme in this review. Although the emphasis in the remainder of this review is on the family of the cancer pain patient, the discussion could readily be applied to the fa�ily of patients suffering from any advanced disease accompanied by pam. Facilitating coping in the terminal pain patient and family through en hancement of sense of control can be separated into three major compo nents. These include: (a) providing accurate information about cancer and its treatment in order to reduce uncertainty and unpredictability, (b) facili tating effective decision making strategies and (c) teaching the patient and
158
NONINVASIVE APPROACHES TO PAIN MANAGEMENT
family specific techniques for the management of pain, stress and related symptoms (see also Mccaffery and Wolff, this volume). INFORMATION AND PREDICTION Providing the cancer pain family with information about the disease process and treatment options serves to increase a sense of control and facilitate coping in several ways. Education begins with providing an ac curate and adaptive conceptual framework for coping with pain and ill ness. Helping the family toward such an understanding may also reduce resistance to use of psychological techniques and increases motivation for treatment compliance (See also Rimer et al., and the concluding paper by Turk and Feldman this volume). Turk and Rennert (1981), Warner and Swensen (1991), and Rimer et al. (this volume) emphasize the importance of providing education as an essential element in the treatment of cancer pain. Factual information is often helpful as fear of the unknown may be the worst fear. Knowledge of the challenges that will be faced and decisions that will need to be made during the course of the illness will help the family to take a proactive rather than a reactive approach to stress. Facili tating a realistic understanding of prognosis increases sense of control by increasing the predictability of the disease. It is important to remember that patients and family members may differ in their ability to deal with information about prognosis and treatment options. The practitioner needs to be sensitive to these individual differences. Evidence of excessive de nial may indicate that an individual is not yet ready for detailed informa tion about prognosis. The Gate Control Theory of Pain (Melzack & Wall, 1965) provides a useful conceptual framework for understanding and cop ing with pain. Understanding of the multidimensional nature of pain helps patients and family members to understand how psychological and social factors can influence pain perception and coping (see Ahles & Martin, this volume). This facilitates the treatment alliance and can improve motiva tion to comply with psycho-social interventions. Resistance and Reframing Resistance to psychological techniques may be addressed by .. refram ing" the use of psychological techniques in terms of increasing control of stress and adaptive coping skills rather than being viewed as a sign of weakness or of psychological problems. The use of psychological tech-
Jan Earl Warner
159
niques does not imply that the pain is "all in the head" of the patient or that the anxious, depressed family member is "crazy" (see also conclud ing paper by Turk and Feldman, this volume). It is important that the practitioner convey to the patient and family that the pain and distress experienced by the patient and family members is real and understand able. Another way that the patient's conceptualization of the situation may be reframed to enhance coping is by addressing the goals of treatment. Goals framed in terms of curing physiological disease may be less adaptive than goals framed in terms of improving the quality of life and the ability to effectively cope with the stress of pain. If the patient or family members view complete cure of disease or total amelioration of pain and emotional distress as the only goals of treatment, they may realistically have little hope of attaining these goals. However, if the goals are to provide the patient with a comfortable, dignified experience during the terminal phase of life and to optimize coping by family members, these are more realistic goals, over which the family members and patient have greater control. The patient and family may be given a simplified explanation of the Gate Control Theory (Melzack & Wall, 1965). This explains how factors such as anxiety and depression may act to "open" the spinal gate and increase sensitivity to pain, whereas relaxation and paying attention to pleasant activities rather than pain sensations act to "close" the spinal gate and reduce sensitivity to pain. Such a physiologically-based explana tion of how psychological factors may work often greatly reduces the resistance of patients and families to psychological interventions (see also concluding chapter by Turk and Feldman, this volume). An understanding of the multidimensional nature of pain may also be facilitated through use of examples from daily life. Patients and family members may be asked if they can recall a time when they were working or playing sports intently, experiencing a feeling of accomplishment or enjoyment, only to later find they had cut or bruised themselves, but felt little or no pain at the time of injury. Examples of athletes injured in competition or soldiers wounded in battle yet continuing to perform may also serve to illustrate the modulating effects of non-physical factors on the pain experience. Helping patients and families understand that they have control over factors that modulate pain, helps them to feel more in control of pain, rather than feeling like helpless victims. The use of educational materials provided by the American Cancer So ciety and the National Cancer Institute is strongly encouraged. The book let Questions and Answers about Pain Control: A Guide for Persons with
160
NONJNVASIVE APPROACHES TO PAIN MANAGEMENT
Cancer and their Families (National Cancer Institute, undated) is particu larly helpful. Other useful materials include Coping With Pain at Home (Rogers, 1987) and Dealing with Pain: A Handbook for Persons with Cancer and Their Families (McCaffery, Morris, & Gross, undated). The use of written materials is helpful to reinforce didactic educational efforts. Written materials also allow different family members to educate them selves at their own pace, as family members will differ in their ability to understand and accept information about the disease and treatment. Dalton and Feuerstein (1989) found that emotional expressivity is help ful in the modulation of cancer pain. It is often helpful for the health care practitioner to explore, encourage expression of and "normalize" the emotional reactions of cancer pain patients and family members. Patients and family members need to be aware that it is common for them to be emotionally labile, experiencing anxiety, depression, anger, irritability and periods of optimism. Family members will often differ in their use of coping mechanisms to deal with the many stresses that accompany terminal illness. They may feel less out of control if they understand such varied psychological reac tions are normal. Defenses such as withdrawal, denial and repression have adaptive roles and become maladaptive only if used excessively. The mal adaptive use of defenses often becomes first evident in poor decision mak ing due to denial about the seriousness of the illness and the viability of curative treatment options. Family members will frequently experience negative emotions and use maladaptive defenses at different times. Such differences between family members are potential sources of intra-family conflict. Family members may be encouraged to use differences in coping strategies as sources of mutual support. For example, a family member who is adaptively using repression and feeling more optimistic may help to encourage a depressed family member to take some time away from the burden of direct caregiv ing and do something that they enjoy. The observant practitioner should encourage such mutually supportive family interactions. As noted above, emotional expressivity appears to be an important fac tor in coping with cancer pain (Dalton & Feuerstein, 1989). Warner and Swensen (1991) found that cancer pain patients who had received counsel ing reported that the opportunity to express problems and concerns with a person other than friends and family was a helpful component in their treatment (see also Fishman, this volume). Psychotherapists and formal support groups may not be appropriate for everyone. Effective "support groups" and "therapists" may include persons at work, school, etc.
Jan Earl Warner
161
These opportunities for emotional expression and social support should be identified and utilized. Understanding the meaning of pain for patients and family members is essential. Pain is often viewed as a sign that the disease is progressing, but this is not always the case. Non-malignant sources of pain such as arthri tis, tension headaches, muscle aches, etc., may be misattributed as symp toms of cancer. It is important to identify and dispel such maladaptive misattributions (Turk & Fernandez, 1990). It is important to determine if spiritual and religious beliefs are being used optimally as resources for coping. It may be useful to discuss reli gious and spiritual needs and beliefs with the family and patient in terms of how they relate to the meaning of pain, suffering and illness. This may be accomplished by careful listening and broaching the topic when appro priate. Is pain viewed as a punishment by God or the natural last stage of life? Terminal pain patients and family members may be angry at or feel forsaken by God and fail to use once strong, adaptive resources for cop ing . .A discussion of these issues with the health care practitioner or clergy may be helpful. Again, differences in beliefs about the meaning of illness and pain may be a source of conflict between family members that can be turned into a source of mutual support. For example, a family member who is feeling angry or forsaken may be encouraged by another family member to participate in reassuring, enjoyable religious service or fellow ship. DECISION MAKING Families are faced with an enormous number of important decisions during the course of illness. Decisions about treatment options, sharing the care burden, role changes within the family, finances and other issues are common, and have very important implications. These decisions have effects not only on the patient but also on family members. Furthermore, such decisions are most often made by the family unit rather than by the patient in isolation. Effective decision making clearly enhances the ability · of cancer pain families to cope and improves their sense of control. Sobel and Worden (1982) have developed a program to help cancer patients learn more effective ways of making decisions about common problems faced during the course of their illness. Warner (1991) has adapted this general paradigm for use with cancer pain patients and their families. This involves teaching an organized, systematic method of prob-
162
NONINVASIVE APPROACHES TO PAIN MANAGEMENT
lem solving that may be used to solve any type of problem more effec tively. Patients and families may be encouraged to solve problems in the following steps: 1. Actively relax. 2. Clearly define and gather information about the problem. 3. Generate as many solutions to the problem as possible without re gard to how "good" or "bad" the solutions are. 4. Evaluate the pros and cons of each solution. 5. Rank the solutions from least to most desirable, make a decision and implement it. 6. Repeat the process as needed. The health care practitioner may demonstrate the use of optimal deci sion making strategies using a specific decision with which the family is currently confronted. Outlining the process of this effective decision mak ing strategy with the patient and family should help them to learn to apply these techniques to other problems. The specific problem used to illustrate the decision making process does not have to be directly related to pain symptoms. Finding effective solutions to problems other than pain can reduce anxiety and depression and improve the patient's and family's abil ity to cope with pain. Families and patients often make treatment decisions based on hearing only a single treatment option offered by the health care professional, without inquiring about other options or making their own treatment pref erences known. Such inquiries and decisions may be anxiety provoking because they confront the patient and families with the reality of the ill ness and treatment options. Therefore, it is frequently easier to passively "decide by not deciding" either by going along with the first option of fered, or by neglecting to investigate and follow through with any alterna tive treatment option. Frequently patients and family members do not make their wishes concerning treatment options known to their physicians because they believe the "doctor knows best." Confidence in the physi cian is clearly an important factor. However, patients and family members sometimes believe their own feelings and wishes are irrelevant to the deci sion making process. Many patients and family members assume that phy sicians can tell by medical tests or physical examination how much pain the patient is experiencing and how effective analgesics and other pallia tive measures are in controlling pain. They often hesitate to "complain" to their physicians about symptoms and side effects for fear of being per ceived as weak or irritable.
Jan Earl Warner
163
Patients and family members often benefit from learning the use of assertive communication skills to help them gather information about treatment options and to make their own symptoms and treatment prefer ences clear to the professionals that are trying to help them. Patients and family members need to be strongly encouraged to clearly communicate physical symptoms, feelings and treatment preferences to their physicians and other health care providers. It is often helpful to encourage patients and family members to write down questions and concerns and bring them along when they see their physician. Written notes are useful as prompts to ask questions and to give the physician necessary information for deci sion making. The use of role-playing and rehearsal is often helpful in assisting the very passive patient or family member communicate assert ively. Helping patients and family members communicate more effec tively with health care professionals helps them to become active partici pants in decision making and increases feelings of self-control. Because pain is often associated with advanced disease, cancer pain families are often affected by issues associated with planning for life changes during severe illness, anticipatory grief and life after the patient's death. For example, it is important to sensitively explore issues including wills, insurance, funeral prearrangements and other unfinished business. It is often beneficial to involve the cancer pain patient in both major and minor decisions to enhance feelings of self-control. Even during severe illness the patient may be involved with decision making, even if only to decide what juice to drink or what bedclothing to wear. PAIN AND STRESS MANAGEMENT TECHNIQUES Control over the stress caused by pain and related symptoms may be enhanced by teaching the patient and family members specific techniques for pain and stress management. This increases the effectiveness of family members as caregivers and increases feelings of self-efficacy in both the patient and family members. Psychological distress as well as psychologi. cal and physical exhaustion are common, particularly among primary caregivers. Family members must frequently be reminded to take care of themselves while they are taking care of the cancer patient. Stress man agement techniques are an essential part of self-care for caregivers. Spe cific techniques are also helpful to the patient in reducing pain, related physical symptoms and emotional distress. Many techniques, such as the use of progressive relaxation, may be useful to both the patient and family members.
164
NONINVASIVE APPROACHES TO PAIN MANAGEMENT
Analgesic Medication Compliance
Despite proper instructions from the prescribing physician, many pa tients and families dispense analgesics only after pain becomes severe, thus maintaining a pain contingent medication schedule. When the pain is allowed to become severe a larger dose of analgesic is required to bring pain back under control. This results in peaks and valleys in analgesic medication blood levels, leading to periods of inadequate analgesia alter nating with periods where higher blood levels may lead to excess side effects such as "mental clouding" and lethargy. Time contingent medica tion schedules minimize these problems. Time contingent medication schedules may also help reduce the anxiety associated with pain, as pa tients do not learn to anticipate that they will have to experience signifi cant pain before they receive relief. Family members frequently dispense medication for the patient or prompt the patient to take medication. Family members may also affect analgesic use in other ways (e.g., "Are you taking another one of those already?"). Despite instructions by the prescribing physician, proper analgesic medication schedules appear to be the exception rather than the rule. Teaching patients and family members techniques for the proper use of analgesic medication is essential (See Rimer et al., this volume). Time contingent analgesic medication schedules, where analgesics are administered strictly by the clock rather than "as needed (PRN), provide optimal pain relief and minimize side effects for the majority of cancer pain patients (Hesketh, 1987; Portenoy, 1990). Time contingent analgesic schedules provide more stable blood levels of analgesic. PRN analgesic doses may be provided for acute exacerbations in pain but these should be minimized with an adequate time contingent dosage. If additional PRN doses become necessary frequently, an increase in the time contingent dose may be considered. Patients and family members need to be made aware of the advantages of time contingent medication schedules. They often resist this for several reasons, asking the question "Why should I take the pain medicine if I don't have any pain?" The use of a simple analogy is often helpful in illustrating the need for time contingent medication schedules, that is: water is to fire as analgesics are to pain (Sternbach, 1987). If a fire is allowed to flare up before water is applied, it will take a great deal of water to bring the fire under control. However, if the fire is doused with a small amount of water at regular intervals, it will remain under control. Similarly, if pain is allowed to flare up and become severe, it will take a large amount of analgesic to bring pain back under control. However, if
Jan Earl Warner
165
analgesics are administered regularly before pain becomes severe, pain control will be optimal. The effectiveness of time released pain medica tions is understandable using this conceptualization. Patients and family members often use a pain contingent medication schedule because they are fearful of addiction. They want to take as little medication as possible so they put off taking medication as long as possi ble. They are also sometimes fearful that if they use narcotic analgesics now they will not be effective later "when they really need it." The fam ily needs to be specifically reassured that with proper medical manage ment, such problems may be avoided. Furthermore, it is sometimes the case that time contingent medication schedules can help minimize the total analgesic dose necessary for adequate analgesia. The proper use of analgesic medication may be reframed as an adaptive coping strategy rather than a sign of weakness or inability to simply tolerate extreme pain. Patients and family members are sometimes noncompliant with narcotic analgesics due to side effects such as constipation and drowsiness. Consti pation may be best managed proactively through control of diet and use of laxatives. Drowsiness and cognitive impairment are generally transient and diminish after the first few days of narcotic therapy or after increases in dosage. Most side effects are minimized by a carefully titrated time contingent analgesic medication schedule. Understanding these aspects of palliative treatment helps to increase proper medication compliance. The practitioner may encourage the use of non-pain cues for administra tion of analgesics once motivation for compliance to a time contingent medication schedule has been addressed. The use of medication organiz ers and associating medication administration with regularly timed daily activities may be helpful. Written lists including times and doses of all analgesics administered, along with notes about patient comfort levels are useful to the patient and family in adhering to proper medication schedules as well as to the practitioner in titrating medication dosages. Relaxation and Imagery Techniques
Stress management techniques provide powerful tools for the relief of pain and psychological distress (Steggles et al., 1987; Warner & Swen sen, 1991). Patients as well as healthy family members may be taught a variety of stress management techniques, including relaxation, and en couraged to regularly use techniques that prove to be most beneficial. The clinical use of relaxation techniques for pain control has been discussed in some detail by several authors (e.g., Turk et al., 1983; Meichenbaum, 1985; Sternbach, 1987). Studies of the use of relaxation training for can-
166
NONINVASIVE APPROACHES TO PAIN MANAGEMENT
cer patients are reviewed by Steggles et al., (1988).Relaxation techniques are often helpful in managing anxiety in family members as well. Instructions to guide the patient (and family members) through the use of relaxation techniques may be tape recorded and used to practice once or twice daily. The practitioner should use a slow-paced, rhythmic, soothing voice and utilize a variety of relaxing adverbs and adjectives. Before the relaxation is induced, a brief overview of the relaxation technique with the patient is helpful.Relaxation techniques may be taught to and be practiced by family members and the patient together. Briefly, the patient is first asked to sit or lie in a comfortable position with eyes closed.The patient is then instructed to focus on maintaining a slow, deep, diaphragmatic breathing pattern. The practitioner may then suggest that the patient imagine that with each breath out, a little tension is released; and with each breath in, fresh air and oxygen are brought in to "help refresh ...and relax ... all the muscles ... of the body." Next, the patient is guided through focused attention on different groups of muscles in the body. At a minimum each arm and leg, the muscles of the stomach and chest, and the muscles of the neck and face, should be given separate attention. Each muscle group should be tensed briefly then relaxed.The patient is then instructed to focus on the contrast between the tense and relaxed feelings in each individual muscle, allow ing them to become "very loose....limp....and comfortable." Imagery may be used to enhance relaxation. The patient may be asked to imagine that tension is draining down the limbs and out of the body as attention is directed to each body part.The patient may be asked to recall imagery of a relaxing scene such as a walk on the beach on a sunny day. Visual imagery as well as sounds, feelings of touch and temperature, smells and tastes should be elicited.The use of imagery is limited only by the imagination of the patient and practitioner. Imagery may also be used to directly modulate the sensation of pain in the patient. The patient may be asked to imagine how his/her pain experi ence might be represented in visual and/or auditory imagery (e.g., "a bright red buzzing piece of lightning across my chest "). After induction of a relaxed state the patient may be asked to focus their attention on this imagery. Next, they should be asked to gradually alter the imagery to become less and less unpleasant and it should be suggested to the patient that as the imagery becomes more pleasant the pain will diminish. In the above example the lightning imagery may become lighter, smaller and softer until it is barely audible or visible (see also Spyra and Spiegel, this volume). Other examples of pain reduction imagery include a large, muscular fist
Jan Earl Warner
167
griping the spine that is altered gradually to a small child's hand rubbing the back gently. Some patients may wish to use imagery of the disease remitting as a substitute for somatic therapies. Clearly, this is not advisa ble. Instead, it may be suggested to the patient that imagery might en hance the effectiveness of somatic therapies and help to reduce side effects such as pain and nausea. Distraction Techniques
The use of distraction techniques is also an important tool for pain con trol. To help understand the rationale for this type of intervention, the cancer pain family may be offered the following conceptualization. If 10% of the pain patient's body hurts, but 100% of his or her attention is focused on the pain, the patient will suffer constantly. However, if 10% of the patient's body hurts, but attention can be diverted from the pain, even if only partially or temporarily, the patient's comfort level will be in creased. Families may be asked to make a list of pleasant activities that they enjoy together and as individuals. These may include reading, television or VCR viewing, hobbies, arts and crafts, music, etc. The use of reminis cence through reading old diaries, looking at old photographs, or telling stories is sometimes a helpful and enjoyable form of distraction and also serves to bring about feelings of closure and accomplishment in life. How ever, reminiscence may be stressful for some patients and family members and their feelings should be carefully considered. Encouraging patients and family members to participate in pleasant activities together helps provide distraction from pain and illness as well as providing a positive focus for family interactions in the midst of a very stressful situation. Is it possible that too much help from family members can hurt the cancer pain patient? It is important to encourage patients to do what they can do comfortably, and to help the patient maximize and pace physical activities. Physical activity may be helpful to maintain stamina, improve sleep, and reduce muscular and joint pain. Encouraging patients to con tinue activities of daily living as long as possible improves their feelings . of self-efficacy and reduces the burden on caregivers. Some well meaning caregivers need to be specifically advised not to perform activities for the patient that he or she can accomplish. The Operant Theory of Pain (Fordyce, 1974) suggests that "pain be havior" (non-verbal communication of pain, distress and suffering in cluding reduction in activities, moaning, and holding the painful area) may be inadvertently reinforced by attention and relief from responsibili ties by persons in the pain patient's environment. In this view, responses
168
NONINVASIVE APPROACHES TO PAIN MANAGEMENT
to pain behavior that are designed to distract attention away from the pain may be more helpful to the pain patient than more solicitous responses. This approach may be helpful with a patient who is highly expressive about pain and related symptoms (Turk & Fernandez, 1990). A brief affir mation of symptoms followed by suggestions for pleasant distracting ac tivities may be useful in the patient who frequently repeats complaints. However, it may be more appropriate to encourage the very stoic patient to be more expressive. For patients who very infrequently discuss pain or emotional distress, it is more appropriate to listen attentively when these issues are raised. Facilitating a balanced level of expressivity regarding physical symptoms and emotions appears to optimize coping. Time Management Time management is an important tool in stress reduction. Particularly for the family members of a terminal home care patient, a regular family meeting to discuss sharing the care burden is helpful. Making written schedules of individual family members' daily and weekly activities may be beneficial in making more efficient use of available time and sharing the care burden more equitably. Clearly, each family member needs time to get away from the home to do personal errands. Primary care givers often need to be encouraged to also take time for recreational activities by themselves or with friends outside the family. Taking personal time should be viewed as an essential part of self-care for care givers. Time for sleep is often neglected particularly in primary care givers. Some dedi cated spouses and adult children need strong encouragement to take recre ational or respite time away from caregiving in order to avoid burnout and provide optimal care for the patient. It is often helpful to point out to caregivers who appear in danger of burnout that optimal care for the pa tient requires adequate self-care. Caregivers may need encouragement to assertively request assistance from family members, friends and/or health care professionals. CONCLUSIONS Involvement of family members in the treatment of cancer pain is not only essential for optimal treatment of the cancer pain patient, but also because family members themselves are at risk for development of stress related problems. Helping family members cope with stress increases their effectiveness as caregivers, and improves their own quality of life. Help-
Jan Earl Warner
169
ing terminal patients cope better with pain symptoms improves their qual ity of life and reduces stress on family members. Helping the terminal pain patient and family realize they have some control is central in improving their ability to cope. First, control may be augmented through education, which provides a more accurate and adap tive conceptual framework for coping with pain, increases predictability, and improves motivation for the use of psychological coping techniques. Second, control may be enhanced by helping the family use optimal deci sion making skills and clear, assertive communication. Finally, sense of control and self-efficacy may be facilitated by teaching the family specific techniques including: proper analgesic compliance, progressive relaxa tion, imagery, distraction techniques, and time management. REFERENCES Block, D. A. (1987). Family/disease/treatment systems: A coevolutionary model. Family Systems Medicine, 5, 277-291. Dalton, J. A., & Feuerstein, M. (1989). Fear, alexithymia and cancer pain. Pain, 38, 159-170. Dobrantz, M. C., Burns, K. M., & Oden, R. V. (1989). Pain in home hospice patients: An exploratory descriptive study. The Hospice Journal, 5, 117-133. Fordyce, W. E. (1974). Pain viewed as learned behavior. In J. J. Bonica (Ed.), Advances in neurology, vol. 4 (pp. 415-422). New York: Raven Press. Hesketh, P. J. (1987). Palliative care in the cancer patient. Journal of the Ameri can Geriatrics Society, 35, 883-885. Holland, J. C. (1989). Anxiety and cancer: The patient and the family. Journal of Clinical Psychiatry, 50, 20-25. Jamison, R. N., & Virts, K. L. (1990). The influence of family support on chronic pain. Behavior Research and Therapy, 28, 283-287. Jevne, R. F. (1990). Looking back to look ahead: A retrospective study of refer rals to a cancer counselling service. International Journal for the Advancement of Counselling, 13, 61-72. McCaffery, M., Morra, M. E., Gross, J. P. & Moritz, K.A. (undated). Dealing with pain: A handbook for persons with cancer and their families. New Haven, CT: American Cancer Society. Meichenbaum, D. (1985). Stress inoculation training. New York: Pergamon Press. Melzack, R., & Wall, P. D. (1965). Pain mechanisms: A new theory. Science, 150, 971. Mor, V., Guadagnoli, E., & Wool, M. (1987). An examination of the concrete service needs of advanced cancer patients. Journal of Psychosocial Oncology, 5, 1-17. National Cancer Institute (undated). Questions and answers about pain control: A
170
NONINVASIVE APPROACHES TO PAIN MANAGEMENT
guide for people with cancer and their families. New York: American Cancer
Society. Portenoy, R. K. (1990). Pharmacologic approaches to the management of cancer pain. Journal of Psychosocial Oncology, 8, 75-107. Rogers, A. (1987). Coping with pain at home. Wilmington, DE: DuPont Pharma ceuticals. Sobel,J.J., & Worden, J. W. (1982). Helping cancer patients cope: A problem solving intervention for health care professionals. New York: BMA Audio Cassette Publications. Steggles, S., Fehr, R., Aucoin, P., & Stam, H.J. (1988). Relaxation, biofeed back training and cancer: An annotated bibliography, 1960-1985. The Hospice Journal, 3, 1-10. Sternbach, R. A. (1987). Mastering pain. New York: Putman's Sons. Turk, D.C., Flor, H. & Rudy, T. E. (1987). Pain and families. I. Etiology, maintenance and psychosocial impact. Pain, 30, 3-27. Turk, D. C., Meichenbaum, D., & Genest, M. (1983). Pain and behavioral med icine: A cognitive behavioral perspective. New York: The Guilford Press. Turk, D. C., & Rennert, K. S. (1981). Pain and the terminally ill cancer patient: A cognitive-social learning perspective. In H. Sobel (Ed.), Behavior therapy in terminal care: A humanistic approach (pp. 95-123). Cambridge, MA: Ballinger Press. Ventafridda, V. (1989). Continuing care: A major issue in cancer pain manage ment. Pain, 36, 137-143. Ventafridda, V., Selmi, S., Di Mola, G., Tamburini, M., & De Conno, F. ( 1987). A new model of continuing care for advanced cancer pain treatment. The Hospice Journal, 3, 85-99. Warner, J. E. (May, 1991). Treatment manual for stress inoculation training in cancer pain patients. Paper presented at the Midwest Psychological Associa tion, Chicago, IL. Warner,J. E. & Swensen, C.H. (1991). Effectiveness of stress inoculation train ing for cancer pain patients. Manuscript submitted for publication. Watson, C. G., & Swensen, C.H. (May, 1991). The quality of life of children of cancer patients. Paper presented at the Midwest Psychological Association, Chicago, IL. Wellisch, D., Landsverk, J., Guidera, K., Pasnau, R. 0., & Fawzy, F. (1983). Evaluation of psychosocial problems of the homebound cancer patient: I. Methodology and problem frequencies. Psychosomatic Medicine, 45, 11-21.
ISSN: 0742-969X (Print) (Online) Journal homepage: http://www.tandfonline.com/loi/ippc19
Involvement of Families in Pain Control of Terminally Ill Patients Jan Earl Warner To cite this article: Jan Earl Warner (1992) Involvement of Families in Pain Control of Terminally Ill Patients, The Hospice Journal, 8:1-2, 155-170, DOI: 10.1080/0742-969X.1992.11882723 To link to this article: https://doi.org/10.1080/0742-969X.1992.11882723
Published online: 21 Aug 2017.
Submit your article to this journal
Citing articles: 1 View citing articles
Full Terms & Conditions of access and use can be found at http://www.tandfonline.com/action/journalInformation?journalCode=ippc20
Involvement of Families in Pain Control of Terminally Ill Patients Jan Earl Warner
SUMMARY. Pain associated with terminal illness is an extremely stressful problem for the patient as well as family members. Helping family members cope increases their effectiveness as caregivers and improves their own quality of life. Conversely, improving the pa tient's ability to cope decreases stress on other family members. Optimal treatment of pain in the terminally ill may be conceptual ized and administered from a family perspective. Methods for help ing families of terminal pain patients cope are organized around a theme of enhancing feelings of control and self-efficacy. Control over pain and related problems may be maximized by providing education, improving decision making and assertiveness skills, and by teaching specific techniques for pain and stress management, in cluding proper analgesic use, progressive relaxation, imagery, dis traction techniques, and time management. These techniques are de scribed from a family perspective in this paper.
INTRODUCTION Family support has been shown to be an important factor in the treat ment of chronic pain (Jamison & Virts, 1990). Turk, Flor, and Rudy (1987) provide an extended review on the interdependency between chronic pain and families. Ventafridda (1989) and Ventafridda, Selmi, DiMola, Tamburini, and DeConno (1987) conclude that involvement of the family is essential for optimal treatment of the cancer pain patient. Although most empirical research in this area is in early stages, the avail. able research indicates that involving the family in treatment is of critical importance for optimal care of the terminally ill patient as well. Family members are clearly in a unique position to provide the patient with en couragement and assistance in participating in the wide variety of noninJan Earl Warner is affiliated with Purdue University. © 1992 by The Haworth Press, Inc. All rights reserved.
155
156
NONINVASIVE APPROACHES TO PAIN MANAGEMENT
vasive interventions for pain and related problems described throughout this volume. Jevne (1990) found that among 192 referrals of oncology patients for counseling, pain control was among the most frequent referral concerns, and lower levels of perceived support were associated with higher levels of depression, anger and stress in family interactions. Individual and fam ily counseling was associated with the likelihood of symptomatic im provement. Involvement of family members is also essential as they are at increased risk for many adjustment problems and in some cases psychiatric disor ders. Pain is frequently associated with advanced disease. Holland (1989) discusses the increased risk for symptoms of anxiety among cancer pain patients and their family members and makes suggestions for intervention. Watson and Swensen (1991) reviewed the literature and present empirical evidence that in families affected by cancer, children and spouses experi ence increased affective distress, behavior problems and health problems as well as decreased quality of life. They conclude these difficulties ap pear to be related to changes in role status and perceived loss within the family. Mor, Guadagnoli, and Wool (1987) note that increased pain in cancer patients is positively related to increased emotional and financial burden within the family. Since family members are at increased risk for stress related problems, they should routinely be assessed for emotional distress. The use of mal adaptive coping techniques such as excessive withdrawal, needs to be monitored. It is important to reassure family members that feelings of distress are often experienced by family members of terminally ill pa tients. Family members, particularly primary caregivers of home care pa tients, can be taught active, adaptive stress management techniques as preventative measures. This should improve their ability to cope with their own stress and will also help them more effectively care for the cancer pain patient. Family members generally express primary concern for the well being and comfort of the patient. Family members often note that they would feel better if they could play an active role in helping the patient cope. Conversely, terminally ill patients are often more concerned about the distress of family members than themselves. Terminal pain patients fre quently present questions about how to help their spouse or children cope as primary concerns. Therefore, helping any member of the family should have positive effects on other family members. Block (1987) proposes a family systems perspective of coping with illness, and applies this view to
Jan Earl Warner
157
specific health problems including pain syndromes and cancer. Family systems theory views the etiology of disorders as a function of interactions within the family unit, rather than a disorder specific to the "identified patient." Therefore, the optimal target of diagnosis and treatment is the family unit. Such a conceptualization may be useful in the treatment of the terminal pain family. It is difficult to separate care for family members and care for the patient, especially when the care is provided in the home. It is particularly distressing to be a family member of a terminal patient who has unrelieved pain. Relationship problems within the family are frequent sequelae of termi nal illness. This is most likely due to the rapid changes in role status within the family due to changes in the functional ability of the terminal patient and financial demands imposed by the illness. Wellisch, Lands verk, Guidera, Pasnau, and Fawzy (1983) found a 32% rate of significant family relationship impairment in families with a family member receiv ing home care for cancer. In a group of 58 terminal cancer pain patients, Dobranz, Burns, and Oden (1989) observed that the most frequently iden tified psychosocial problem was patient-family-caregiver adjustment, present in 67% of cancer pain families. Turk, Meichenbaum, and Genest (1983) assert that the feeling of Joss of control is a very important factor in the pain experience in general and cancer pain in particular. In support of this assertion, Dalton and Feuer stein (1989) found that in a group of 27 cancer pain patients, concern about loss of control was by far the largest factor endorsed on a factor analytically derived pain profile. Turk and Rennert (1981) have proposed an intervention program for the treatment of cancer pain that emphasizes enhancement of the patients' feeling of self-control and self-efficacy. Increasing patients' "sense of control" is a central factor in the ability to cope with pain effectively. Therefore, facilitating a sense of control and self-efficacy in patients and family members will be used as a central organizing theme in this review. Although the emphasis in the remainder of this review is on the family of the cancer pain patient, the discussion could readily be applied to the fa�ily of patients suffering from any advanced disease accompanied by pam. Facilitating coping in the terminal pain patient and family through en hancement of sense of control can be separated into three major compo nents. These include: (a) providing accurate information about cancer and its treatment in order to reduce uncertainty and unpredictability, (b) facili tating effective decision making strategies and (c) teaching the patient and
158
NONINVASIVE APPROACHES TO PAIN MANAGEMENT
family specific techniques for the management of pain, stress and related symptoms (see also Mccaffery and Wolff, this volume). INFORMATION AND PREDICTION Providing the cancer pain family with information about the disease process and treatment options serves to increase a sense of control and facilitate coping in several ways. Education begins with providing an ac curate and adaptive conceptual framework for coping with pain and ill ness. Helping the family toward such an understanding may also reduce resistance to use of psychological techniques and increases motivation for treatment compliance (See also Rimer et al., and the concluding paper by Turk and Feldman this volume). Turk and Rennert (1981), Warner and Swensen (1991), and Rimer et al. (this volume) emphasize the importance of providing education as an essential element in the treatment of cancer pain. Factual information is often helpful as fear of the unknown may be the worst fear. Knowledge of the challenges that will be faced and decisions that will need to be made during the course of the illness will help the family to take a proactive rather than a reactive approach to stress. Facili tating a realistic understanding of prognosis increases sense of control by increasing the predictability of the disease. It is important to remember that patients and family members may differ in their ability to deal with information about prognosis and treatment options. The practitioner needs to be sensitive to these individual differences. Evidence of excessive de nial may indicate that an individual is not yet ready for detailed informa tion about prognosis. The Gate Control Theory of Pain (Melzack & Wall, 1965) provides a useful conceptual framework for understanding and cop ing with pain. Understanding of the multidimensional nature of pain helps patients and family members to understand how psychological and social factors can influence pain perception and coping (see Ahles & Martin, this volume). This facilitates the treatment alliance and can improve motiva tion to comply with psycho-social interventions. Resistance and Reframing Resistance to psychological techniques may be addressed by .. refram ing" the use of psychological techniques in terms of increasing control of stress and adaptive coping skills rather than being viewed as a sign of weakness or of psychological problems. The use of psychological tech-
Jan Earl Warner
159
niques does not imply that the pain is "all in the head" of the patient or that the anxious, depressed family member is "crazy" (see also conclud ing paper by Turk and Feldman, this volume). It is important that the practitioner convey to the patient and family that the pain and distress experienced by the patient and family members is real and understand able. Another way that the patient's conceptualization of the situation may be reframed to enhance coping is by addressing the goals of treatment. Goals framed in terms of curing physiological disease may be less adaptive than goals framed in terms of improving the quality of life and the ability to effectively cope with the stress of pain. If the patient or family members view complete cure of disease or total amelioration of pain and emotional distress as the only goals of treatment, they may realistically have little hope of attaining these goals. However, if the goals are to provide the patient with a comfortable, dignified experience during the terminal phase of life and to optimize coping by family members, these are more realistic goals, over which the family members and patient have greater control. The patient and family may be given a simplified explanation of the Gate Control Theory (Melzack & Wall, 1965). This explains how factors such as anxiety and depression may act to "open" the spinal gate and increase sensitivity to pain, whereas relaxation and paying attention to pleasant activities rather than pain sensations act to "close" the spinal gate and reduce sensitivity to pain. Such a physiologically-based explana tion of how psychological factors may work often greatly reduces the resistance of patients and families to psychological interventions (see also concluding chapter by Turk and Feldman, this volume). An understanding of the multidimensional nature of pain may also be facilitated through use of examples from daily life. Patients and family members may be asked if they can recall a time when they were working or playing sports intently, experiencing a feeling of accomplishment or enjoyment, only to later find they had cut or bruised themselves, but felt little or no pain at the time of injury. Examples of athletes injured in competition or soldiers wounded in battle yet continuing to perform may also serve to illustrate the modulating effects of non-physical factors on the pain experience. Helping patients and families understand that they have control over factors that modulate pain, helps them to feel more in control of pain, rather than feeling like helpless victims. The use of educational materials provided by the American Cancer So ciety and the National Cancer Institute is strongly encouraged. The book let Questions and Answers about Pain Control: A Guide for Persons with
160
NONJNVASIVE APPROACHES TO PAIN MANAGEMENT
Cancer and their Families (National Cancer Institute, undated) is particu larly helpful. Other useful materials include Coping With Pain at Home (Rogers, 1987) and Dealing with Pain: A Handbook for Persons with Cancer and Their Families (McCaffery, Morris, & Gross, undated). The use of written materials is helpful to reinforce didactic educational efforts. Written materials also allow different family members to educate them selves at their own pace, as family members will differ in their ability to understand and accept information about the disease and treatment. Dalton and Feuerstein (1989) found that emotional expressivity is help ful in the modulation of cancer pain. It is often helpful for the health care practitioner to explore, encourage expression of and "normalize" the emotional reactions of cancer pain patients and family members. Patients and family members need to be aware that it is common for them to be emotionally labile, experiencing anxiety, depression, anger, irritability and periods of optimism. Family members will often differ in their use of coping mechanisms to deal with the many stresses that accompany terminal illness. They may feel less out of control if they understand such varied psychological reac tions are normal. Defenses such as withdrawal, denial and repression have adaptive roles and become maladaptive only if used excessively. The mal adaptive use of defenses often becomes first evident in poor decision mak ing due to denial about the seriousness of the illness and the viability of curative treatment options. Family members will frequently experience negative emotions and use maladaptive defenses at different times. Such differences between family members are potential sources of intra-family conflict. Family members may be encouraged to use differences in coping strategies as sources of mutual support. For example, a family member who is adaptively using repression and feeling more optimistic may help to encourage a depressed family member to take some time away from the burden of direct caregiv ing and do something that they enjoy. The observant practitioner should encourage such mutually supportive family interactions. As noted above, emotional expressivity appears to be an important fac tor in coping with cancer pain (Dalton & Feuerstein, 1989). Warner and Swensen (1991) found that cancer pain patients who had received counsel ing reported that the opportunity to express problems and concerns with a person other than friends and family was a helpful component in their treatment (see also Fishman, this volume). Psychotherapists and formal support groups may not be appropriate for everyone. Effective "support groups" and "therapists" may include persons at work, school, etc.
Jan Earl Warner
161
These opportunities for emotional expression and social support should be identified and utilized. Understanding the meaning of pain for patients and family members is essential. Pain is often viewed as a sign that the disease is progressing, but this is not always the case. Non-malignant sources of pain such as arthri tis, tension headaches, muscle aches, etc., may be misattributed as symp toms of cancer. It is important to identify and dispel such maladaptive misattributions (Turk & Fernandez, 1990). It is important to determine if spiritual and religious beliefs are being used optimally as resources for coping. It may be useful to discuss reli gious and spiritual needs and beliefs with the family and patient in terms of how they relate to the meaning of pain, suffering and illness. This may be accomplished by careful listening and broaching the topic when appro priate. Is pain viewed as a punishment by God or the natural last stage of life? Terminal pain patients and family members may be angry at or feel forsaken by God and fail to use once strong, adaptive resources for cop ing . .A discussion of these issues with the health care practitioner or clergy may be helpful. Again, differences in beliefs about the meaning of illness and pain may be a source of conflict between family members that can be turned into a source of mutual support. For example, a family member who is feeling angry or forsaken may be encouraged by another family member to participate in reassuring, enjoyable religious service or fellow ship. DECISION MAKING Families are faced with an enormous number of important decisions during the course of illness. Decisions about treatment options, sharing the care burden, role changes within the family, finances and other issues are common, and have very important implications. These decisions have effects not only on the patient but also on family members. Furthermore, such decisions are most often made by the family unit rather than by the patient in isolation. Effective decision making clearly enhances the ability · of cancer pain families to cope and improves their sense of control. Sobel and Worden (1982) have developed a program to help cancer patients learn more effective ways of making decisions about common problems faced during the course of their illness. Warner (1991) has adapted this general paradigm for use with cancer pain patients and their families. This involves teaching an organized, systematic method of prob-
162
NONINVASIVE APPROACHES TO PAIN MANAGEMENT
lem solving that may be used to solve any type of problem more effec tively. Patients and families may be encouraged to solve problems in the following steps: 1. Actively relax. 2. Clearly define and gather information about the problem. 3. Generate as many solutions to the problem as possible without re gard to how "good" or "bad" the solutions are. 4. Evaluate the pros and cons of each solution. 5. Rank the solutions from least to most desirable, make a decision and implement it. 6. Repeat the process as needed. The health care practitioner may demonstrate the use of optimal deci sion making strategies using a specific decision with which the family is currently confronted. Outlining the process of this effective decision mak ing strategy with the patient and family should help them to learn to apply these techniques to other problems. The specific problem used to illustrate the decision making process does not have to be directly related to pain symptoms. Finding effective solutions to problems other than pain can reduce anxiety and depression and improve the patient's and family's abil ity to cope with pain. Families and patients often make treatment decisions based on hearing only a single treatment option offered by the health care professional, without inquiring about other options or making their own treatment pref erences known. Such inquiries and decisions may be anxiety provoking because they confront the patient and families with the reality of the ill ness and treatment options. Therefore, it is frequently easier to passively "decide by not deciding" either by going along with the first option of fered, or by neglecting to investigate and follow through with any alterna tive treatment option. Frequently patients and family members do not make their wishes concerning treatment options known to their physicians because they believe the "doctor knows best." Confidence in the physi cian is clearly an important factor. However, patients and family members sometimes believe their own feelings and wishes are irrelevant to the deci sion making process. Many patients and family members assume that phy sicians can tell by medical tests or physical examination how much pain the patient is experiencing and how effective analgesics and other pallia tive measures are in controlling pain. They often hesitate to "complain" to their physicians about symptoms and side effects for fear of being per ceived as weak or irritable.
Jan Earl Warner
163
Patients and family members often benefit from learning the use of assertive communication skills to help them gather information about treatment options and to make their own symptoms and treatment prefer ences clear to the professionals that are trying to help them. Patients and family members need to be strongly encouraged to clearly communicate physical symptoms, feelings and treatment preferences to their physicians and other health care providers. It is often helpful to encourage patients and family members to write down questions and concerns and bring them along when they see their physician. Written notes are useful as prompts to ask questions and to give the physician necessary information for deci sion making. The use of role-playing and rehearsal is often helpful in assisting the very passive patient or family member communicate assert ively. Helping patients and family members communicate more effec tively with health care professionals helps them to become active partici pants in decision making and increases feelings of self-control. Because pain is often associated with advanced disease, cancer pain families are often affected by issues associated with planning for life changes during severe illness, anticipatory grief and life after the patient's death. For example, it is important to sensitively explore issues including wills, insurance, funeral prearrangements and other unfinished business. It is often beneficial to involve the cancer pain patient in both major and minor decisions to enhance feelings of self-control. Even during severe illness the patient may be involved with decision making, even if only to decide what juice to drink or what bedclothing to wear. PAIN AND STRESS MANAGEMENT TECHNIQUES Control over the stress caused by pain and related symptoms may be enhanced by teaching the patient and family members specific techniques for pain and stress management. This increases the effectiveness of family members as caregivers and increases feelings of self-efficacy in both the patient and family members. Psychological distress as well as psychologi. cal and physical exhaustion are common, particularly among primary caregivers. Family members must frequently be reminded to take care of themselves while they are taking care of the cancer patient. Stress man agement techniques are an essential part of self-care for caregivers. Spe cific techniques are also helpful to the patient in reducing pain, related physical symptoms and emotional distress. Many techniques, such as the use of progressive relaxation, may be useful to both the patient and family members.
164
NONINVASIVE APPROACHES TO PAIN MANAGEMENT
Analgesic Medication Compliance
Despite proper instructions from the prescribing physician, many pa tients and families dispense analgesics only after pain becomes severe, thus maintaining a pain contingent medication schedule. When the pain is allowed to become severe a larger dose of analgesic is required to bring pain back under control. This results in peaks and valleys in analgesic medication blood levels, leading to periods of inadequate analgesia alter nating with periods where higher blood levels may lead to excess side effects such as "mental clouding" and lethargy. Time contingent medica tion schedules minimize these problems. Time contingent medication schedules may also help reduce the anxiety associated with pain, as pa tients do not learn to anticipate that they will have to experience signifi cant pain before they receive relief. Family members frequently dispense medication for the patient or prompt the patient to take medication. Family members may also affect analgesic use in other ways (e.g., "Are you taking another one of those already?"). Despite instructions by the prescribing physician, proper analgesic medication schedules appear to be the exception rather than the rule. Teaching patients and family members techniques for the proper use of analgesic medication is essential (See Rimer et al., this volume). Time contingent analgesic medication schedules, where analgesics are administered strictly by the clock rather than "as needed (PRN), provide optimal pain relief and minimize side effects for the majority of cancer pain patients (Hesketh, 1987; Portenoy, 1990). Time contingent analgesic schedules provide more stable blood levels of analgesic. PRN analgesic doses may be provided for acute exacerbations in pain but these should be minimized with an adequate time contingent dosage. If additional PRN doses become necessary frequently, an increase in the time contingent dose may be considered. Patients and family members need to be made aware of the advantages of time contingent medication schedules. They often resist this for several reasons, asking the question "Why should I take the pain medicine if I don't have any pain?" The use of a simple analogy is often helpful in illustrating the need for time contingent medication schedules, that is: water is to fire as analgesics are to pain (Sternbach, 1987). If a fire is allowed to flare up before water is applied, it will take a great deal of water to bring the fire under control. However, if the fire is doused with a small amount of water at regular intervals, it will remain under control. Similarly, if pain is allowed to flare up and become severe, it will take a large amount of analgesic to bring pain back under control. However, if
Jan Earl Warner
165
analgesics are administered regularly before pain becomes severe, pain control will be optimal. The effectiveness of time released pain medica tions is understandable using this conceptualization. Patients and family members often use a pain contingent medication schedule because they are fearful of addiction. They want to take as little medication as possible so they put off taking medication as long as possi ble. They are also sometimes fearful that if they use narcotic analgesics now they will not be effective later "when they really need it." The fam ily needs to be specifically reassured that with proper medical manage ment, such problems may be avoided. Furthermore, it is sometimes the case that time contingent medication schedules can help minimize the total analgesic dose necessary for adequate analgesia. The proper use of analgesic medication may be reframed as an adaptive coping strategy rather than a sign of weakness or inability to simply tolerate extreme pain. Patients and family members are sometimes noncompliant with narcotic analgesics due to side effects such as constipation and drowsiness. Consti pation may be best managed proactively through control of diet and use of laxatives. Drowsiness and cognitive impairment are generally transient and diminish after the first few days of narcotic therapy or after increases in dosage. Most side effects are minimized by a carefully titrated time contingent analgesic medication schedule. Understanding these aspects of palliative treatment helps to increase proper medication compliance. The practitioner may encourage the use of non-pain cues for administra tion of analgesics once motivation for compliance to a time contingent medication schedule has been addressed. The use of medication organiz ers and associating medication administration with regularly timed daily activities may be helpful. Written lists including times and doses of all analgesics administered, along with notes about patient comfort levels are useful to the patient and family in adhering to proper medication schedules as well as to the practitioner in titrating medication dosages. Relaxation and Imagery Techniques
Stress management techniques provide powerful tools for the relief of pain and psychological distress (Steggles et al., 1987; Warner & Swen sen, 1991). Patients as well as healthy family members may be taught a variety of stress management techniques, including relaxation, and en couraged to regularly use techniques that prove to be most beneficial. The clinical use of relaxation techniques for pain control has been discussed in some detail by several authors (e.g., Turk et al., 1983; Meichenbaum, 1985; Sternbach, 1987). Studies of the use of relaxation training for can-
166
NONINVASIVE APPROACHES TO PAIN MANAGEMENT
cer patients are reviewed by Steggles et al., (1988).Relaxation techniques are often helpful in managing anxiety in family members as well. Instructions to guide the patient (and family members) through the use of relaxation techniques may be tape recorded and used to practice once or twice daily. The practitioner should use a slow-paced, rhythmic, soothing voice and utilize a variety of relaxing adverbs and adjectives. Before the relaxation is induced, a brief overview of the relaxation technique with the patient is helpful.Relaxation techniques may be taught to and be practiced by family members and the patient together. Briefly, the patient is first asked to sit or lie in a comfortable position with eyes closed.The patient is then instructed to focus on maintaining a slow, deep, diaphragmatic breathing pattern. The practitioner may then suggest that the patient imagine that with each breath out, a little tension is released; and with each breath in, fresh air and oxygen are brought in to "help refresh ...and relax ... all the muscles ... of the body." Next, the patient is guided through focused attention on different groups of muscles in the body. At a minimum each arm and leg, the muscles of the stomach and chest, and the muscles of the neck and face, should be given separate attention. Each muscle group should be tensed briefly then relaxed.The patient is then instructed to focus on the contrast between the tense and relaxed feelings in each individual muscle, allow ing them to become "very loose....limp....and comfortable." Imagery may be used to enhance relaxation. The patient may be asked to imagine that tension is draining down the limbs and out of the body as attention is directed to each body part.The patient may be asked to recall imagery of a relaxing scene such as a walk on the beach on a sunny day. Visual imagery as well as sounds, feelings of touch and temperature, smells and tastes should be elicited.The use of imagery is limited only by the imagination of the patient and practitioner. Imagery may also be used to directly modulate the sensation of pain in the patient. The patient may be asked to imagine how his/her pain experi ence might be represented in visual and/or auditory imagery (e.g., "a bright red buzzing piece of lightning across my chest "). After induction of a relaxed state the patient may be asked to focus their attention on this imagery. Next, they should be asked to gradually alter the imagery to become less and less unpleasant and it should be suggested to the patient that as the imagery becomes more pleasant the pain will diminish. In the above example the lightning imagery may become lighter, smaller and softer until it is barely audible or visible (see also Spyra and Spiegel, this volume). Other examples of pain reduction imagery include a large, muscular fist
Jan Earl Warner
167
griping the spine that is altered gradually to a small child's hand rubbing the back gently. Some patients may wish to use imagery of the disease remitting as a substitute for somatic therapies. Clearly, this is not advisa ble. Instead, it may be suggested to the patient that imagery might en hance the effectiveness of somatic therapies and help to reduce side effects such as pain and nausea. Distraction Techniques
The use of distraction techniques is also an important tool for pain con trol. To help understand the rationale for this type of intervention, the cancer pain family may be offered the following conceptualization. If 10% of the pain patient's body hurts, but 100% of his or her attention is focused on the pain, the patient will suffer constantly. However, if 10% of the patient's body hurts, but attention can be diverted from the pain, even if only partially or temporarily, the patient's comfort level will be in creased. Families may be asked to make a list of pleasant activities that they enjoy together and as individuals. These may include reading, television or VCR viewing, hobbies, arts and crafts, music, etc. The use of reminis cence through reading old diaries, looking at old photographs, or telling stories is sometimes a helpful and enjoyable form of distraction and also serves to bring about feelings of closure and accomplishment in life. How ever, reminiscence may be stressful for some patients and family members and their feelings should be carefully considered. Encouraging patients and family members to participate in pleasant activities together helps provide distraction from pain and illness as well as providing a positive focus for family interactions in the midst of a very stressful situation. Is it possible that too much help from family members can hurt the cancer pain patient? It is important to encourage patients to do what they can do comfortably, and to help the patient maximize and pace physical activities. Physical activity may be helpful to maintain stamina, improve sleep, and reduce muscular and joint pain. Encouraging patients to con tinue activities of daily living as long as possible improves their feelings . of self-efficacy and reduces the burden on caregivers. Some well meaning caregivers need to be specifically advised not to perform activities for the patient that he or she can accomplish. The Operant Theory of Pain (Fordyce, 1974) suggests that "pain be havior" (non-verbal communication of pain, distress and suffering in cluding reduction in activities, moaning, and holding the painful area) may be inadvertently reinforced by attention and relief from responsibili ties by persons in the pain patient's environment. In this view, responses
168
NONINVASIVE APPROACHES TO PAIN MANAGEMENT
to pain behavior that are designed to distract attention away from the pain may be more helpful to the pain patient than more solicitous responses. This approach may be helpful with a patient who is highly expressive about pain and related symptoms (Turk & Fernandez, 1990). A brief affir mation of symptoms followed by suggestions for pleasant distracting ac tivities may be useful in the patient who frequently repeats complaints. However, it may be more appropriate to encourage the very stoic patient to be more expressive. For patients who very infrequently discuss pain or emotional distress, it is more appropriate to listen attentively when these issues are raised. Facilitating a balanced level of expressivity regarding physical symptoms and emotions appears to optimize coping. Time Management Time management is an important tool in stress reduction. Particularly for the family members of a terminal home care patient, a regular family meeting to discuss sharing the care burden is helpful. Making written schedules of individual family members' daily and weekly activities may be beneficial in making more efficient use of available time and sharing the care burden more equitably. Clearly, each family member needs time to get away from the home to do personal errands. Primary care givers often need to be encouraged to also take time for recreational activities by themselves or with friends outside the family. Taking personal time should be viewed as an essential part of self-care for care givers. Time for sleep is often neglected particularly in primary care givers. Some dedi cated spouses and adult children need strong encouragement to take recre ational or respite time away from caregiving in order to avoid burnout and provide optimal care for the patient. It is often helpful to point out to caregivers who appear in danger of burnout that optimal care for the pa tient requires adequate self-care. Caregivers may need encouragement to assertively request assistance from family members, friends and/or health care professionals. CONCLUSIONS Involvement of family members in the treatment of cancer pain is not only essential for optimal treatment of the cancer pain patient, but also because family members themselves are at risk for development of stress related problems. Helping family members cope with stress increases their effectiveness as caregivers, and improves their own quality of life. Help-
Jan Earl Warner
169
ing terminal patients cope better with pain symptoms improves their qual ity of life and reduces stress on family members. Helping the terminal pain patient and family realize they have some control is central in improving their ability to cope. First, control may be augmented through education, which provides a more accurate and adap tive conceptual framework for coping with pain, increases predictability, and improves motivation for the use of psychological coping techniques. Second, control may be enhanced by helping the family use optimal deci sion making skills and clear, assertive communication. Finally, sense of control and self-efficacy may be facilitated by teaching the family specific techniques including: proper analgesic compliance, progressive relaxa tion, imagery, distraction techniques, and time management. REFERENCES Block, D. A. (1987). Family/disease/treatment systems: A coevolutionary model. Family Systems Medicine, 5, 277-291. Dalton, J. A., & Feuerstein, M. (1989). Fear, alexithymia and cancer pain. Pain, 38, 159-170. Dobrantz, M. C., Burns, K. M., & Oden, R. V. (1989). Pain in home hospice patients: An exploratory descriptive study. The Hospice Journal, 5, 117-133. Fordyce, W. E. (1974). Pain viewed as learned behavior. In J. J. Bonica (Ed.), Advances in neurology, vol. 4 (pp. 415-422). New York: Raven Press. Hesketh, P. J. (1987). Palliative care in the cancer patient. Journal of the Ameri can Geriatrics Society, 35, 883-885. Holland, J. C. (1989). Anxiety and cancer: The patient and the family. Journal of Clinical Psychiatry, 50, 20-25. Jamison, R. N., & Virts, K. L. (1990). The influence of family support on chronic pain. Behavior Research and Therapy, 28, 283-287. Jevne, R. F. (1990). Looking back to look ahead: A retrospective study of refer rals to a cancer counselling service. International Journal for the Advancement of Counselling, 13, 61-72. McCaffery, M., Morra, M. E., Gross, J. P. & Moritz, K.A. (undated). Dealing with pain: A handbook for persons with cancer and their families. New Haven, CT: American Cancer Society. Meichenbaum, D. (1985). Stress inoculation training. New York: Pergamon Press. Melzack, R., & Wall, P. D. (1965). Pain mechanisms: A new theory. Science, 150, 971. Mor, V., Guadagnoli, E., & Wool, M. (1987). An examination of the concrete service needs of advanced cancer patients. Journal of Psychosocial Oncology, 5, 1-17. National Cancer Institute (undated). Questions and answers about pain control: A
170
NONINVASIVE APPROACHES TO PAIN MANAGEMENT
guide for people with cancer and their families. New York: American Cancer
Society. Portenoy, R. K. (1990). Pharmacologic approaches to the management of cancer pain. Journal of Psychosocial Oncology, 8, 75-107. Rogers, A. (1987). Coping with pain at home. Wilmington, DE: DuPont Pharma ceuticals. Sobel,J.J., & Worden, J. W. (1982). Helping cancer patients cope: A problem solving intervention for health care professionals. New York: BMA Audio Cassette Publications. Steggles, S., Fehr, R., Aucoin, P., & Stam, H.J. (1988). Relaxation, biofeed back training and cancer: An annotated bibliography, 1960-1985. The Hospice Journal, 3, 1-10. Sternbach, R. A. (1987). Mastering pain. New York: Putman's Sons. Turk, D.C., Flor, H. & Rudy, T. E. (1987). Pain and families. I. Etiology, maintenance and psychosocial impact. Pain, 30, 3-27. Turk, D. C., Meichenbaum, D., & Genest, M. (1983). Pain and behavioral med icine: A cognitive behavioral perspective. New York: The Guilford Press. Turk, D. C., & Rennert, K. S. (1981). Pain and the terminally ill cancer patient: A cognitive-social learning perspective. In H. Sobel (Ed.), Behavior therapy in terminal care: A humanistic approach (pp. 95-123). Cambridge, MA: Ballinger Press. Ventafridda, V. (1989). Continuing care: A major issue in cancer pain manage ment. Pain, 36, 137-143. Ventafridda, V., Selmi, S., Di Mola, G., Tamburini, M., & De Conno, F. ( 1987). A new model of continuing care for advanced cancer pain treatment. The Hospice Journal, 3, 85-99. Warner, J. E. (May, 1991). Treatment manual for stress inoculation training in cancer pain patients. Paper presented at the Midwest Psychological Associa tion, Chicago, IL. Warner,J. E. & Swensen, C.H. (1991). Effectiveness of stress inoculation train ing for cancer pain patients. Manuscript submitted for publication. Watson, C. G., & Swensen, C.H. (May, 1991). The quality of life of children of cancer patients. Paper presented at the Midwest Psychological Association, Chicago, IL. Wellisch, D., Landsverk, J., Guidera, K., Pasnau, R. 0., & Fawzy, F. (1983). Evaluation of psychosocial problems of the homebound cancer patient: I. Methodology and problem frequencies. Psychosomatic Medicine, 45, 11-21.
