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Social Work in Health Care Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/wshc20
Chronic Obstructive Pulmonary Diseasea
Barbara Rabinowitz MA & Victor Florian PhD
b
a
Deputy Director and Senior Superisor, Social Services, Meir Hospital, Kfar Sava, Israel b
Associate Professor, Department of Psychology and School of Social Work, Bar Ilan University, Ramat Gan, Israel Published online: 26 Oct 2008.
To cite this article: Barbara Rabinowitz MA & Victor Florian PhD (1992) Chronic Obstructive Pulmonary Disease-, Social Work in Health Care, 16:4, 69-86, DOI: 10.1300/J010v16n04_05 To link to this article: http://dx.doi.org/10.1300/J010v16n04_05
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Chronic Obstructive Pulmonary DiseasePsycho-Social Issues and Treatment Goals Barbara Rabinowitz, MA Victor Florian, PhD
ABSTRACT. Chronic Obstructive Pulmonary Disease (COPD) is one of the major chronic debilitating diseases frequently seen in hospital settings. The disease appears usually aftcr Ule age of fifty and often predicts a shortened life span. The present papcr is a review of the literaturc relating to the psychological aspects of this disease. The impact on psychosocial coping and adaptation will be discussed, specifically the effects on marital and sexual functioning and the quality of life of the patient. Psycho-social treatment goals useful to the COPD patient and his family will be raised and elaborated on.
INTRODUCTION In the last few decades the problem of patients with chronic illnesses has become a central issue in health care systems, especially in hospital settings. The treatment of these patients requires a combined approach of the medical and psycho-social team in dealing comprehensively with this population. The consequences of chronic illness can range from relatively minor difficulties to life crises. This paper, dealing with Chronic Obstructive Lung Disease Barbara Rabinowitz is Deputy Director and Senior Supervisor, Social Services, Meir Hospital, Kfar Sava, Israel. Victor Florian is Associate Professor, Department of Psychology and School of Social Work. Bar Ilan University. Ramat Gan, Israel. Social Work in Health Care, Vol. 16(4) 1992 O 1992 by The Haworth Press, Inc. All rights rcscrvcd.
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(COPD) (Emphysema and Chronic Bronchitis), will outline the major issues involved in the understanding and treatment of these patients. Because there is no effective treatment to prevent the course of the disease but only to partially alleviate the symptoms, COPD presents us with a special challenge (Phillips, 1990). A situation wherein the illness is progressive makes special demands on the patient and biopsycho-social environment. Not always are these demands easily met. Although COPD is one of the major chronic illnesses frequently seen in hospital settings (Williams and Bury, 1989) and much literature concerning- empirical and clinical intervention has been written, very little has appeared in health care social work literature (Clough, 1987). Social work, with its emphasis on case management involving patient care, utilization of the family support system and advocacy within the medical setting can and should relate to COPD in a more specific and direct way. This paper will attempt to present some of the most relevant methods of intervention in order to facilitate coping and adjustment to this chronic illness. -
COPD-MEDICAL AND DEMOGRAPHIC DESCRIPTION
Medical Description: COPD is a chronic debilitating disease as a result of which the patient slowly and progressively deteriorates. The medical term encompasses several distinct diseases that include Emphysema and Chronic Bronchitis-often occuning together in the same patient, and characterized by retardation of expiratory airflow. The term, although imprecise, is widely used (Phillips, 1990). Emphysema is defined as "permanent, abnormal enlargement of any part or all of the respiratory acinus, which is accompanied by destruction of respiratory tissue" (Phillips, 1990). Patients usually present with breathlessness (dyspnea) and with mild to moderate disease. This is present during exertion. However, as the illness progresses, dyspnea is present even when the patient is at rest. Emphysema expresses itself usually in the 6th decade of the patient's life. The patients often become thin and wasted in advanced cases. The deterioration of the pulmonary function may extend over
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a period of many years. Acute respiratory failure is usually a bad sign because it occurs near the end stage in which the patient may be attached to a machine (oxygen concentrator) that supplies the much needed oxygen to his non-functioning lungs. There is a strong statistical relationship with cigarette smoking. There is no effective treatment, but symptomatic measures may be taken to improve the patient's quality of life (Bordow, 1986; Manson, 1981). Chronic Bronchitis is d e f i e d as "cough and production of sputum on most days for 3 months or more for two consecutive years" (Phillips, 1990, page 145). There is also effort dyspnea, but it is episodic rather than progressive. The illness is more common in men than in women, with the highest incidence over the age of 50. There is a strong statistical relationship with cigarette smoking, respiratory infections, environmental hazards and possible genetic factors. The patients are usually not thin and may even be obese. As the illness progresses there is an increasing frequency of respiratory failure, often leading to death. As in Emphysema, there is no effective treatment that may prevent the course of the illness, but the treatment is symptomatic,~includingthe prevention of infections when necessary (Bordow, 1986; Manson, 1981). Usually the treatment for both includes medication and physical therapy exercises. Demographic Description: In the United States COPD is the second leading cause of disability among the working population (Post and Collins, 1981-2). Clough (1987) states that COPD is currently the sixth leading cause of death in the U.S.A. and is increasing in incidence at twice the rate of lung cancer. In the U.K. Williams and Bury (1989) maintain that the symptoms of COPD (mainly dyspnea) are a major medical and social problem. These symptoms are the most common reason for absence from work in the U.K. (Rosser et al., 1983). In Israel, as in other western countries, there are a substantial number of COPD patients. According to the Ministry of Health statistics (for hospital deaths) a similar pattern to that in the U.S.A. of a high mortality rate due to COPD was found in Israel. However, no statistics on morbidity could be made available. Due to this reason a partial survey was conducted for the presentation of this paper using the Pulmonary Department of Meir Hospital (the national hospitalization department for the Sick Fund Health Insur-
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ance, serving about 80% of the Israeli population). From this survey of 389 COPD patients hospitalized in 1989 and 1990 it appears that the majority (64%) of these patients are males and a vast majority (83%) 60 years old or more. Therefore it can be concluded that the basic profile of these patients in Israel is more or less similar to other western countries. An important issue to mention in regard to the prevalence of the illness is the high hospitalization rate this population presents. Generally this population is hospitalized twice as long as patients with other respiratory diseases (Yellowlees et al., 1987). This demands a great investment of time and money. Early identification and treatment of the psycho-social issues may be beneficial in prevention or unnecessary extension of hospitalization.
PHYSICAL AND EMOTIONAL REACTION TO COPD It is important, at the outset, to understand that there are various degrees of physical and emotional impairment accompanying the disease in its different stages. Dudley et al. (1980) classify 5 levels of functioning of the COPD patient:
i. Patient with recognized disease: With no restriction, is able to do what peers can do, continues normal life patterns. ii. Patient with minimal or moderately restricted activity: Is able to do productive work, has some difficulty in keeping up with peers, has begun to modify life pattern. iii. Patient with markedly restricted activity: Is not home bound, may not be able to do productive work but is still able to care for himself. iv. Patient with severely restricted activity: 1s not able to do productive work, is essentially home bound but is still able to care for most of his needs. v. Patient with very severely restricted activity: Is home bound or in an institution and is not able to care for himself.
Brief Case Example: L. is a 65 year old unmarried truck driver suffering from COPD for the last 15 years. He lived alone in a
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fourth floor apartment, had poor relationships with his family and few social contacts. Four years ago he was still able to work, although in a modified fashion and would be hospitalized only during severe attacks of the illness. However a year later his physical condition deteriorated dramatically, he was hospitalized often, he was no longer able to work although still able to care for his basic needs. Two years ago his condition worsened further. Due to limited interpersonal relationships and his unsuitable home conditions, he was no longer able to reside in his home environment. (He was attached to an oxygen machine for most of the day and was unable to walk more than a few steps at a time.) The hospital became his second home and with his agreement, arrangements were made for permanent institutionalization. Today he is in a hospital for chronic patients and is unable to care for most of his daily needs. He has given up his individuality that was so important for him and seems to have accepted his new environment. However he still has hopes and plans to return home "one day." As might be expected, the fact that COPD involves breathing difficulties and is a progressive debilitating disease, the psychological impact differs from stage to stage and tends to be gradually more severe in the more incapacitating stages of the illness. In reviewing the literature the two major psychological responses appearing characteristic to the illness are anxiety and depression. In addition, some commonly used defense mechanisms can be identified and explored.
Anxiety Strachey (1959) notes that as early as the writings of Freud (1905) the connection was made between anxiety and breathlessness. Freud maintained that the act of birth and the resultant struggle for the first few breaths is the first experience of anxiety and thus the source and prototype of the effect of mood. Breathlessness itself is an anxiety provoking situation and a variety of studies have supported the fact that COPD patients suffer from feelings of anxiety (Beck, 1988; Wise, 1988; Kinsman, 1983; Dudley et al., 1980). For example, in a study carried out by Yellowlees (1987) it was found that as many as 34% of the 50 COPD
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patients he measured suffered from anxiety disorders. Factors responsible for this may include dyspnea itself and a real fear of suffocation and death. The literature reviewed has shown that there appears to be a self perpetuating nature to the COPD patient's symptoms, especially breathlessness. One possible explanation is that the feelings raised by the dyspnea may then trigger further attacks of dyspnea (Sandhu, 1986) and consequently lead to a cyclic effect. It seems therefore that anxiety is probably the single strongest predictor of both physical and psycho-social stress levels in these patients (Post and Collins, 1981-2). Another possible explanation might be due to the fact that these patients come to perceive the locus of control for their breathing as being external to themselves. This may lead to a feeling of lack of control in their interaction with their environment, causing dyspnea as a result of anxiety (Post and Collins, 1981-2). In recent years several studies have emphasized the existence of panic as a specific entity within the anxiety disorder in this patient population (Karajgee et al., 1990; Yellowlees et al., 1987; Sandhu, 1986). For example in the study cited previously by Yellowlees (1987), 24% of the patients were found to suffer from the more severe form of anxiety i.e., panic disorder. Situations where the patient is left on his own in enclosed spaces or has breathing difficulties may heighten this feeling of panic. Distinction between panic and anxiety is important for both patient management and requires specific treatment intervention. Brief Case Example: Miss K . is a 74 year old patient suffering from COPD. Since her mother's death some 20 years ago she has lived alone with a poor social network. Her niece assists her with all technical arrangements, but the patient's family does not supply a social support system. Miss K. is attached to an oxygen concentrator machine for most part of the day and is very limited in selfhelp activities. She received help several hours a day from community resources. A year prior to her admission to a chronic hospital setting, Miss K. was repeatedly admitted to hospital. She expressed severe feelings of anxiety leading to attacks of breathlessness. Because she lived alone, she feared that during an attack she would have no person to help her and she would be left to die. Often just the thought of dying could bring on an anxiety attack, leading to
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breathlessness and hence hospitalization. Due to the patient's lack of compliance and co-operation, and her non-supportive social network, she was unable to be discharged to her home environment and had to be placed in institutional care.
Depression The other most persistent psychological fmding in the COPD patient is depression characterized by pessimism of outlook and feelings of hopelessness and worthlessness (Sandhu, 1987). Frequent sadness, tearfulness, lack of motivation, suicidal ideation, loss of appetite and sleep have been used as a description of the depressive feelings of the COPD patient (Agle and Baum, 1973). For example, again in the study conducted by Yellowlees (1987) it was found that as many as 16% of the COPD patients were diagnosed as suffering from depression. However, sometimes the clear cut diagnosis of depression is difficult to make because of the physical symptoms manifested by the illness itself. These patients are often thin, have sleeping problems because of breathing difficulties, and are therefore often tired as a result of their illness. This compounding effect may lead to difficult diagnostic procedures. As the illness progresses the patient becomes more depressed, especially as he becomes more and more isolated and more embarrassed as a result of his cough and sputum production (Dudley et al., 1980). In the late stages of the disease, or following a severe attack, some COPD patients focus their attention on dying and many even fantasize about the circumstances of their death and its impact on others. This may prevent them from leaving the hospital or even attempting to function to a limited degree independently. The slow course of the disease may result in a prolonged absence of a mourning reaction in the experience of many COPD patients (Post & Collins, 1981-2). They could have difficulty in accepting their physical and psychological losses yet are often unable to express these losses for fear of the effect this will have on their breathing. The COPD patient can be described as living in an "emotional straight-jacket" (Yellowlees et al., 1987). As in the case of anxiety, the accurate diagnosis of depression is necessary in order to implement the proper management and treatment interventions.
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Defense Mechanisms Frequently Used by COPD Patients Clinical experience and some empirical studies have revealed a strong tendency for COPD to employ specific defense mechanisms. Any sudden emotional shift may lead to a change in the physiological condition which can aggravate the rate of breathing. Therefore, the COPD patient attempts to protect himselfherself from this situation by using several prominent defense mechanisms-denial, repression, suppression, projection and displacement (Agle & Baum, 1977). Denial: By the time the COPD patient is diagnosed he may already be in the moderately disabled stage. Because of the silent nature of the illness, the patient's complaints are often ignored. He or she may, in turn, deny hisher own symptoms for fear of facing his disability and the progressive deterioration. An example of this mechanism could be the patient denying that smoking has anything to do with his physical state or denying the fact that his condition has deteriorated from the moderate to severe stage. Repression or Suppression: These two mechanisms aid the patient to avoid dealing with the emotional difficulties and to cope with the daily routine. In this way the patients refuse to confront their illness and tend to take life as it comes. For example, the patient will refuse to change hisher work load despite deterioration in hisher physiological condition. Projection or Displacement: The COPD patients may have a tendency to place the blame on others and not take responsibility for his actions. They can become resentful of the hospital staff and blame them for their lack of improvement. Brief Case Illustration: Mrs. F. is a 73 year old married COPD patient who lives at home, in close proximity to her two daughters. She receives attendant help at home in addition to the help she receives from her family system. She has a troubled relationship with her husband, and during hospitalization often expresses an angry and demanding attitude towards the staff. Always, close to discharge, Mrs. F. increa~esher physical complaints, becomes nonco-operative with the nursing staff and non-adherent to her attending physician. She always looks for reasons not to go home and blames all her care-givers for her present condition. Social work intervention is necessary at this stage, often in consultation with the
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medical team, in an attempt to help the patient face his own reality situation. THE IMPACT OF COPD ON SOCIAL ROLES
Literature on the impact of COPD on various life domains covers a diversity of necessary and unavoidable changes in the life style of the patients and their environment. When chronic illness causes disability it becomes a family problem, affecting the development goals of other members of the family or the family as a whole. One of the goals of the family is to deal with these difficulties with emotional economy. In the "illness life cycle," due to many developmental changes, the family may move from a centripetal crisis phase to a centrifugal chronic phase and back again (Roland, 1987).
Quality of Life of COPD Patients Quality of life of the COPD patient within the development of his disease has been a subject of discussion for theoreticians and clinicians. McSweeney and Clough (1987) describe similar models of quality of life of COPD patients. Clough defines five psycho-socia1 areas where COPD may affect not only the patient, but also hisher family. 1. Wage-earning abiliry-as a result of which there is a drain on the financial resources of the family. Ultimately the social status of the family may be affected as well as its ability to maintain its quality of life on the same level as before the illness. 2. Roles within the family are altered-the previous homeostasis is altered leading to a range of different adjustment patterns within the family. Expected spouse roles may have to be interchanged and this may cause conflicts or miscommunication within the family. 3. Diminished independence-the family is no longer able to function as a complete family unit outside the home as the patient becomes more and more dependent on the oxygen machine and therefore less mobile. Family members are involved in direct care as the patient's ability to care for himself is decreased. 4. Decrease of social activities-social activities are reduced in general and social losses are felt as fewer visitors visit the home.
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In addition, family members may be restricted in their own recreational activities. 5. Oxygen concentrator and its effects on the family-in the later stages of the disease, due to pulmonary impairment, the patient uses the oxygen concentrator for most parts of the day. The machine becomes a permanent fixture in the patient's home, which may lead to difficulties and tensions in the family system. It seems that the oxygen concentrator becomes a new entity in the family's interaction with the patient. This issue deserves further elaboration and has not received enough attention in the literature. For the patient the use of oxygen represents the end of a useful and independent existence (Petty, 1981). The patient's premorbid personality and family support system will certainly affect how he/she adapts to the machine at home. From the medical point of view, in comparison to the haemodialysis machine, the oxygen concentrator is cheaper to run and patient selection criteria is clearer and easier to o b t a i n - ~ o m epreparation and training for the machine is minimal and manipulation of the machine is relatively simple. Unlike the haemodialysis machine, the oxygen concentrator is controlled by the patient himself. Most haemodialysis patients do not require daily haemodialysis, while the COPD patient needs the machine for long stretches daily and therefore his encounter with the machine is more frequent, affecting his already diminished independence. However, feelings of dependency, growing as the patient's physical state weakens, may lead to a lack of locus of control, feelings of helplessness and anger either directed internally or projected out. The COPD patient is dependent for hisher very life on the oxygen concentrator and the very presence of the machine represents his restricted activity and decreased sense of worth. This situation can only increase already existing fears and feelings of anger and dependency that are often projected onto the family. The care-giver in turn can also feel helpless, resentful and angry, which may lead to feelings of guilt often followed by over-protectiveness (Sandhu, 1986). From a therapeutic point of view, the stage where the patient is confronted with the fact that helshe needs home oxygen demands
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special intervention both by the social worker and the physician. This confrontation with the "life saver" may be a crisis situation for both the patient and hisher family. The patient has to deal, maybe for the fust time, with the fact that hisher condition, and in particular hisher breathing difficulties, can only deteriorate. Additional fears may become real issues4ectricity failure can lead to death, the initial fear of being alone becomes exacerbated and hisher dependence on his environment is increased.
Effects of COPD on Marital and Sexual Functioning Since COPD develops in "middle-age" and later years, it should be remembered that patterns of marital and sexual relationships are usually well established and the couple have developed accepted forms of sexual practice. However, due to the gradual physical deterioration of the patient, the impact of the disease could be expected also in the area of sexual functioning, both physically and psychologically. The issue is rarely touched in empirical research and most of the knowledge is based on limited clinical experience (Conine and Evans, 1981; Agle and Baum, 1977; Dudley et al., 1980; Sandhu, 1986; Clough, 1987; Foxall et al., 1987). Moreover, both physicians and social workers prefer to avoid this sensitive and delicate issue and as a result this important area of life is often neglected. Physical effects of COPD are relevant to sexual activity in three areas: (i) Weariness is common among COPD patients; (ii) dyspnea is heightened by the pressure against the chest of the bottom partner in a top/bottom intercourse position; (iii) bronchospasms which produce coughing can be activated by the increased demand on the respiratory system (Conine and Evans, 1981). Fear of being unable to perform due to the psycho-medical issue coupled with the need to make frequent intervals during intercourse can inhibit sexual activity. COPD may be associated with male impotence in the absence of other commonly known causes (Fletcher and Martin, 1982). Male and female patients experience their sexual difficulties differently because of the different positions and socio-cultural
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demands undertaken in coitus. Males usually have to have an erection to perform the sexual act and therefore may be affected by the decreased libido, fear of impotence or inhibited sexual activity. The common expected male-superior position in coitus is often too strenuous if the COPD partner is the male, which can lead to dyspnea and/or bronchospasms. The healthy male partner of the female COPD patient may also experience impotence due to his fear of hurting his partner. Sometimes, due to the same reasons as the male patient, the female COPD patient also tends to suffer from a decreased interest in sexual intercourse. In addition, in coitus, the female patient may be affected both in the superior or active position and in the inactive position in intercourse due to the pressure on her chest. Schover and Jensen (1988) report that COPD has a negative impact on physical aspects of sexuality both for male and female patients. However, sexual performance is still an important aspect to the COPD patient and his spouse as the patients' other role losses have been so greatly enhanced by their pulmonary dysfunction. Intervention in this area is of prime importance because this is one area in which the patient can be assisted to regain some of his previous functioning. Psycho-educational intervention techniques are recommended in an attempt to minimize the stressful effects of intercourse. The role of the mental health practitioner is to identify the needs and difficulties and in a combined approach with the medical team, offer the appropriate intervention methods. For example, a night's rest, abstinence of heavy meals and use of an inhalator before sexual intercourse can be useful information. Rest at intervals during the physical act, masturbation and new sexual positions can be adopted. The use of oxygen before and during the act and/or medication prior to sexual intercourse can be effective in preventing bronchospasm (Conine and Evans, 1981). Improving this important area of functioning can be satisfying to both the patient and his spouse.
PSYCHO-SOCIAL TREATMENT METHODS AND GOALS As in other chronic ilh~esses,many treatment methods are employed in dealing with the psycho-social needs of the COPD pa-
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tient. The range includes individual, marital and family therapy, group work and patient education programs among others. Instead of simply reviewing these methods, we have adopted a different approach in which we attempt to assess the goals of the intervention rather than the type of treatment offered by social workers and other mental health professionals. Based on the literature presented in the previous pages, we have identified five main areas in which psycho-social intervention may be required. These include: 1. Compliance of the patient with the medical team in an at-
2. 3. 4. 5.
tempt to teach the patient how to participate in hisher management as an active partner with hisher physician. Development of new attitudes through an increase in locus of control over physical, respiratory and emotional functioning. The advancement of a more positive approach to life changes. Modification of interactions between the patient and hisher social environment. The working through of the many losses entailed by COPD.
Compliance: It appears that roughly only half of the patients with chronic illnesses follow medical directives. There are several reasons for this. First, each patient has his or her own culturally determined health belief model that affects his or her willingness and motivation for co-operation. Secondly, psycho-dynamic issues related to dependency or shame and guilt about the disease may also affect the patient's ability or desire to comply. Often over-protection of families, leading to infantizing the patient, may also lead to noncompliance (Backman, 1989). Moreover, the quality of the patient/doctor relationship will probably greatly influence the compliant attitude of the patient. Although not emphasized as a major issue in the clinical intervention with the COPD patient, the existence of this problem should be assessed and intervention be made accordingly. Development of new at~itudesthrorrgh an increase in locris of control over physical, respiratory and em)tionalfiinc~ioning:(a) Goal setting is recommended by Dudley et al. (1980) for those patients who need to regain confidence after a frightening attack of dyspnea.
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Individualized goals aimed at optimal activity level, independence and self-care offer the patient encouragement and hope and give hirnlher a sense of control after a disturbing experience. (b) A patient psycho-edircation program was instigated by Clough et al. (1987). This program wherein a multi-disciplinary team conducted a four day workshop encouraging patients to share coping strategies with each other e.g., how to deal better with feelings of anger. Assessment three and a half years later showed that the combination of doctors and physiotherapists was the most effective combination in treatment with the COPD patient, allowing him to take control of hisher physical changes through breathing. restraining, exercise and reconditioning. (c) Sex therapy-as has been previously discussed, the patient should be encouraged to regain control of his body through education and counselling by using techniques like altering positions and correct medication. (d) Breathing techniques, meditation, relaxation training and biofeedback are methods to alleviate anxiety and are particularly relevant to the COPD patient. These exercises give the patient a feeling of mastery over his anxiety and fears and allow him to engage in activities that might give more meaning to his existence. (e) Cessation of smoking campaigns are an important preventive treatment program. This is a method used to bring to light the hazards of smoking. It is educational in nature, used especially to prevent the COPD patient from smoking. Patients see themselves as having caused their own illness through smoking (Yellowlees, 1987) and this program can give them a feeling of mastery. It is unclear to what extent cessation of smoking will slow the progression once the patient has moderate COPD symptoms, although several investigations have indicated some benefit (Rosser et a]., 1983). The advancement of a more positive approach to the acceptance of l f e changes-A Life Change Monitory recommended by Dudley et al. (1980) includes the use of the HOMES-RAHE Social Readjustment Rating Scale wherein both the patient and his physician or social worker can monitor, in advance, those life changes which will be additional stressors on the patient. The culmination of stressors leading to strain can be appraised on the Rating Scale and the patient can be assisted to either avoid or alter these potentially threatening events or find social support systems to help him con-
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front the experience. For example, in cases where the health of the care-giver is affected and deterioration is threatened, if identified in time, appropriate measures may be planned to prevent a decrease in quality of care. The introduction of appropriate attendant care and/or respite care services may be utilized. In other instances where the illness leads to major Life changes, the social worker may intervene by assisting the patient in dealing with important decisions such as the need for permanent institutionalization. Finally, when death is imminent the patient and his family can be assisted to deal with the im~licationsthereof. Wills can be written out accordingly and the patient could be encouraged to deal with unfinished business with his or her family or friends. Modification of interactions between the patient and his social environment may include several techniques dealt with under the umbrella title of behaviour modification or behaviour therapy. Positive reinforcement in maintaining social contacts, relaxation exercises to reduce social anxiety, systematic desensitization for the fear of social rejection, assertiveness training such as how to say "no" to those who smoke in the patient's presence and role playing of marital/social interaction are all part of this therapeutic approach. These techniques enable the patient to be more at ease with his surroundings and benefit the most from his interactions with family and friends. The working through of losses entailed by COPD can be dealt with in different ways: (a) Psychotherapy offers the opportunity to the patient to deal with the psycho-dynamic issues of the illness. This includes the experience of loss of physical health with its ramifications on the patient including emotional withdrawal and the fear of death (Rosser et al., 1983; Agle and Baurn, 1977; Dudley et al., 1980; Yellowlees, 1987).A comprehensive study undertaken by Rosser et al. (1983) drew the conclusion that psycho-analytic techniques were less appropriate for the COPD patient when compared to a supportive group or a non-treatment control group. However, psychotherapy with the challenge to the therapist to get in touch with the most significant feelings of the COPD patient still remains as an optional form of treatment appropriate for certain COPD patients. This is especially relevant where the patients are suffering from a severe form of depression or anxiety. [For illustration
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of this technique, see examples of case studies, Yellowlees (1987)l. (b) Marital or familypsychotherapy-this is particularly appropriate for those COPD patients where the family roles have been altered and impaired (Post and Collins, 1981-2). This method enables the couple and/or family to gain insight into the losses occurred as a result of the illness. Finally, it is worthwhile to emphasize that although COPD is a chronic and a gradually debilitating disease, psycho-social intervention is not a necessity for every patient all the time. Social workers are advised to clearly define which goal is appropriate to the individual patient and hisher family in each stage of the development of the disease and then to intervene accordingly.
REFERENCES Agle, D., Baum, G. and Chester, E. (1973). Multidiscipline treatment of chronic pulmonary imufficicncy: Psychological aspects of rehabilitation. Psyclwsomatic Medicine, 35, 4149. Agle, D., and Baum, G. (1977). Psychological aspects of chronic obstructive lung disease. Medical Clinics of North America, 61, 749-758. Rackman, M. (1989). The psychology of rlte physically ill patient. New York and London, Plenum Ress. Beck, G., Scott, S., Tcague. R., Perez, F. and Brown, A. (1988). Corrclatcs oC daily impairment in chronic obstructive pulmonary disease. Relrabilitarion Psychology, 33(2), 77-84. Bordow, R. and Moser, K. (1986). Chronic obstructive pulmonary disease, clinical and laboratory manifestations, pathophysiology and prognosis. In Moser, R. (Ed.) Manual o/ clinical problems. in pulmonary medicine. Boston: Little Brown Company. Clough, P., Harnisch, L., Cebulski, P. and Ross, D. (1987). Method for individualizing patient care for obstructive pulmonary disease patients. Healrh and Social Work, 12(2), 127-133. Conine, T. and Evans, J. (1981). Sexual adjustment in chronic obstructive pulmonary disease. Respiratory Care, 26(9), 871-874. Dudley, D., Glascr, E., Jorgensson, B. and Logan, D. Psychosocial concomitants to rehabilitation in chronic obstructivc pulmonary disease: part one. Psychosocia1 and psychological considerations. Chest, 77(3), 413420. Fletcher, E. and Martin, R. (1982). Sexual dysfunction and erectile impotence in chronic obstructivc pulmonary disease. Chest, 4(4), 413-421.
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Foxall, M., Ekberg, J. and Griftith, N. (1987). Comparative study of adjustment patterns of chronic obstructive pulmonary diseasc patients and peripheral vascular disease patients. Heart and Lung, 16(4), 354-363. Francis, P.B. 1983). Acute respiratory failure in obstructive lung disease. The American Clinics of Norlh America, 67(3), 657-668. Karajgee, B., Rifkin, A., Doddi, S. and Kolli, R. (1990). The prevalence of anxiety disordcrs in paticnts with chronic obslructive pulmonary disease. American Journal of Psychiatry, 147, 200-201. Kinsman, R., Fernandez, E., Schocket, M., Dirks, J. and Covino, N. (1982). Multidimensional analysis of the symptoms of chronic bronchitis and emphysema. Journal of bchavioural Medicine, 6(4). 339-357. Kinsman, R., Yaroush, R., Fernandez, E. and Dirks, J. (1983). Symptoms and experiences in chronic bronchitis and emphysema Cliest, 83(2), 755-761. Levinson, D. (1978). The seasom of a man's lve. New York, Ballantine Books. Manson, R. and Rushing, J. (1981). Respiratory tract and mediastanurn. In Krupp. M. and Chatton, M. (Eds.) Current medical diagnosis and treatment. New York: Lange Medical Publications. McSwccncy, A., Grant, I., Heaton, R., Adams, K, and T i s , R. (1982). Life quality of paticnts with chronic obstructive pulmonary disease. Archives of It~ternalMedicine, 142, 473-480. Petty, T. (1986). Health, sex and better quality of life for your chronic obstructive pulmonary disease patient. Medical Aspects of Human Sexuality, 20(8), 70-85. Petty, T. (1981). Home oxygen in advanccd obstructive pulmonary disease. The Medical Clit~icsof North America, 65(3), 615-627. Phillips, B. (1990). Chronic obstructive pulmonary disease. In R. Rakel (Ed), Conn's current therapy. Philadelphia, U.S.A. Saunders Company. Post, L. and Collins, C. (1981-2). The poorly coping chronic pulmonary diseasc patient: A psychotherapeutic perspective. International Journal of Psychiatry in Medicine, 11(2), 173-182. Roland, J. (1987). Chronic illness and the life cycle. Family Process, 26,203-221. Rosser, R., Denford, J., Heslup, A.. Kinston, W., Macklin, D., Minty, K., Moynkhan, C., Muir, B., Rein, L. and Guz, A. (1983). Breathlessness and psychiatric morbidity in chronic bronchitis and emphysema: A study of psychothcrapcutic managemenl. Psycliological Medicine, 13, 93-110. Rowlct, D. and Dudley. D. (1978). Chronic obstructive pulmonary disease: psychosocial and psychophysiological issues. Psycliosomatics, 19, 273-279. Sandhu, H. (1986). Pulmonary rehabilitation. Clinics in Chcst Medicine, 7(4), 544-561. Schover, L., and Jcnsen, S. Sexuality and chronic illness. New York: The Guilford Press, 1988. Strachey, J. The standard edition of thecomplete psychological works of Sigmund Freud. London: The Hogarth Press Limited, 1959. Williams, S.J. and Bury, M.R. (1989). "Breathtaking": The consequences of chronic respiratory disorder. Ititernational Disability Studies, 1I, 114-120.
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Wise, T., Schiavone. A. and Sitts, T. (1988). The depressed patient with chronic obstructive pulmonary disease. Gcneral Hospital Psychiatry, 10. 142-147. Yellowlees, P., Alpers, J.H., Bowden, J.J., Bryant, G.D. and Ruffin, R.E. (1987). Psychiatric morbidity in patients with chronic airflow obstruction. The Medical Journul of Ausfruliu, 146, 305-307. Yellowlees, P.M.(1987). The treatment o f psychiatric disorders i n patients w i t h cluonic airways obstruction Tlic Mcdical Journal ofAustralia, 147, 349-352.
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Chronic Obstructive Pulmonary Diseasea
Barbara Rabinowitz MA & Victor Florian PhD
b
a
Deputy Director and Senior Superisor, Social Services, Meir Hospital, Kfar Sava, Israel b
Associate Professor, Department of Psychology and School of Social Work, Bar Ilan University, Ramat Gan, Israel Published online: 26 Oct 2008.
To cite this article: Barbara Rabinowitz MA & Victor Florian PhD (1992) Chronic Obstructive Pulmonary Disease-, Social Work in Health Care, 16:4, 69-86, DOI: 10.1300/J010v16n04_05 To link to this article: http://dx.doi.org/10.1300/J010v16n04_05
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Chronic Obstructive Pulmonary DiseasePsycho-Social Issues and Treatment Goals Barbara Rabinowitz, MA Victor Florian, PhD
ABSTRACT. Chronic Obstructive Pulmonary Disease (COPD) is one of the major chronic debilitating diseases frequently seen in hospital settings. The disease appears usually aftcr Ule age of fifty and often predicts a shortened life span. The present papcr is a review of the literaturc relating to the psychological aspects of this disease. The impact on psychosocial coping and adaptation will be discussed, specifically the effects on marital and sexual functioning and the quality of life of the patient. Psycho-social treatment goals useful to the COPD patient and his family will be raised and elaborated on.
INTRODUCTION In the last few decades the problem of patients with chronic illnesses has become a central issue in health care systems, especially in hospital settings. The treatment of these patients requires a combined approach of the medical and psycho-social team in dealing comprehensively with this population. The consequences of chronic illness can range from relatively minor difficulties to life crises. This paper, dealing with Chronic Obstructive Lung Disease Barbara Rabinowitz is Deputy Director and Senior Supervisor, Social Services, Meir Hospital, Kfar Sava, Israel. Victor Florian is Associate Professor, Department of Psychology and School of Social Work. Bar Ilan University. Ramat Gan, Israel. Social Work in Health Care, Vol. 16(4) 1992 O 1992 by The Haworth Press, Inc. All rights rcscrvcd.
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(COPD) (Emphysema and Chronic Bronchitis), will outline the major issues involved in the understanding and treatment of these patients. Because there is no effective treatment to prevent the course of the disease but only to partially alleviate the symptoms, COPD presents us with a special challenge (Phillips, 1990). A situation wherein the illness is progressive makes special demands on the patient and biopsycho-social environment. Not always are these demands easily met. Although COPD is one of the major chronic illnesses frequently seen in hospital settings (Williams and Bury, 1989) and much literature concerning- empirical and clinical intervention has been written, very little has appeared in health care social work literature (Clough, 1987). Social work, with its emphasis on case management involving patient care, utilization of the family support system and advocacy within the medical setting can and should relate to COPD in a more specific and direct way. This paper will attempt to present some of the most relevant methods of intervention in order to facilitate coping and adjustment to this chronic illness. -
COPD-MEDICAL AND DEMOGRAPHIC DESCRIPTION
Medical Description: COPD is a chronic debilitating disease as a result of which the patient slowly and progressively deteriorates. The medical term encompasses several distinct diseases that include Emphysema and Chronic Bronchitis-often occuning together in the same patient, and characterized by retardation of expiratory airflow. The term, although imprecise, is widely used (Phillips, 1990). Emphysema is defined as "permanent, abnormal enlargement of any part or all of the respiratory acinus, which is accompanied by destruction of respiratory tissue" (Phillips, 1990). Patients usually present with breathlessness (dyspnea) and with mild to moderate disease. This is present during exertion. However, as the illness progresses, dyspnea is present even when the patient is at rest. Emphysema expresses itself usually in the 6th decade of the patient's life. The patients often become thin and wasted in advanced cases. The deterioration of the pulmonary function may extend over
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a period of many years. Acute respiratory failure is usually a bad sign because it occurs near the end stage in which the patient may be attached to a machine (oxygen concentrator) that supplies the much needed oxygen to his non-functioning lungs. There is a strong statistical relationship with cigarette smoking. There is no effective treatment, but symptomatic measures may be taken to improve the patient's quality of life (Bordow, 1986; Manson, 1981). Chronic Bronchitis is d e f i e d as "cough and production of sputum on most days for 3 months or more for two consecutive years" (Phillips, 1990, page 145). There is also effort dyspnea, but it is episodic rather than progressive. The illness is more common in men than in women, with the highest incidence over the age of 50. There is a strong statistical relationship with cigarette smoking, respiratory infections, environmental hazards and possible genetic factors. The patients are usually not thin and may even be obese. As the illness progresses there is an increasing frequency of respiratory failure, often leading to death. As in Emphysema, there is no effective treatment that may prevent the course of the illness, but the treatment is symptomatic,~includingthe prevention of infections when necessary (Bordow, 1986; Manson, 1981). Usually the treatment for both includes medication and physical therapy exercises. Demographic Description: In the United States COPD is the second leading cause of disability among the working population (Post and Collins, 1981-2). Clough (1987) states that COPD is currently the sixth leading cause of death in the U.S.A. and is increasing in incidence at twice the rate of lung cancer. In the U.K. Williams and Bury (1989) maintain that the symptoms of COPD (mainly dyspnea) are a major medical and social problem. These symptoms are the most common reason for absence from work in the U.K. (Rosser et al., 1983). In Israel, as in other western countries, there are a substantial number of COPD patients. According to the Ministry of Health statistics (for hospital deaths) a similar pattern to that in the U.S.A. of a high mortality rate due to COPD was found in Israel. However, no statistics on morbidity could be made available. Due to this reason a partial survey was conducted for the presentation of this paper using the Pulmonary Department of Meir Hospital (the national hospitalization department for the Sick Fund Health Insur-
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ance, serving about 80% of the Israeli population). From this survey of 389 COPD patients hospitalized in 1989 and 1990 it appears that the majority (64%) of these patients are males and a vast majority (83%) 60 years old or more. Therefore it can be concluded that the basic profile of these patients in Israel is more or less similar to other western countries. An important issue to mention in regard to the prevalence of the illness is the high hospitalization rate this population presents. Generally this population is hospitalized twice as long as patients with other respiratory diseases (Yellowlees et al., 1987). This demands a great investment of time and money. Early identification and treatment of the psycho-social issues may be beneficial in prevention or unnecessary extension of hospitalization.
PHYSICAL AND EMOTIONAL REACTION TO COPD It is important, at the outset, to understand that there are various degrees of physical and emotional impairment accompanying the disease in its different stages. Dudley et al. (1980) classify 5 levels of functioning of the COPD patient:
i. Patient with recognized disease: With no restriction, is able to do what peers can do, continues normal life patterns. ii. Patient with minimal or moderately restricted activity: Is able to do productive work, has some difficulty in keeping up with peers, has begun to modify life pattern. iii. Patient with markedly restricted activity: Is not home bound, may not be able to do productive work but is still able to care for himself. iv. Patient with severely restricted activity: 1s not able to do productive work, is essentially home bound but is still able to care for most of his needs. v. Patient with very severely restricted activity: Is home bound or in an institution and is not able to care for himself.
Brief Case Example: L. is a 65 year old unmarried truck driver suffering from COPD for the last 15 years. He lived alone in a
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fourth floor apartment, had poor relationships with his family and few social contacts. Four years ago he was still able to work, although in a modified fashion and would be hospitalized only during severe attacks of the illness. However a year later his physical condition deteriorated dramatically, he was hospitalized often, he was no longer able to work although still able to care for his basic needs. Two years ago his condition worsened further. Due to limited interpersonal relationships and his unsuitable home conditions, he was no longer able to reside in his home environment. (He was attached to an oxygen machine for most of the day and was unable to walk more than a few steps at a time.) The hospital became his second home and with his agreement, arrangements were made for permanent institutionalization. Today he is in a hospital for chronic patients and is unable to care for most of his daily needs. He has given up his individuality that was so important for him and seems to have accepted his new environment. However he still has hopes and plans to return home "one day." As might be expected, the fact that COPD involves breathing difficulties and is a progressive debilitating disease, the psychological impact differs from stage to stage and tends to be gradually more severe in the more incapacitating stages of the illness. In reviewing the literature the two major psychological responses appearing characteristic to the illness are anxiety and depression. In addition, some commonly used defense mechanisms can be identified and explored.
Anxiety Strachey (1959) notes that as early as the writings of Freud (1905) the connection was made between anxiety and breathlessness. Freud maintained that the act of birth and the resultant struggle for the first few breaths is the first experience of anxiety and thus the source and prototype of the effect of mood. Breathlessness itself is an anxiety provoking situation and a variety of studies have supported the fact that COPD patients suffer from feelings of anxiety (Beck, 1988; Wise, 1988; Kinsman, 1983; Dudley et al., 1980). For example, in a study carried out by Yellowlees (1987) it was found that as many as 34% of the 50 COPD
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patients he measured suffered from anxiety disorders. Factors responsible for this may include dyspnea itself and a real fear of suffocation and death. The literature reviewed has shown that there appears to be a self perpetuating nature to the COPD patient's symptoms, especially breathlessness. One possible explanation is that the feelings raised by the dyspnea may then trigger further attacks of dyspnea (Sandhu, 1986) and consequently lead to a cyclic effect. It seems therefore that anxiety is probably the single strongest predictor of both physical and psycho-social stress levels in these patients (Post and Collins, 1981-2). Another possible explanation might be due to the fact that these patients come to perceive the locus of control for their breathing as being external to themselves. This may lead to a feeling of lack of control in their interaction with their environment, causing dyspnea as a result of anxiety (Post and Collins, 1981-2). In recent years several studies have emphasized the existence of panic as a specific entity within the anxiety disorder in this patient population (Karajgee et al., 1990; Yellowlees et al., 1987; Sandhu, 1986). For example in the study cited previously by Yellowlees (1987), 24% of the patients were found to suffer from the more severe form of anxiety i.e., panic disorder. Situations where the patient is left on his own in enclosed spaces or has breathing difficulties may heighten this feeling of panic. Distinction between panic and anxiety is important for both patient management and requires specific treatment intervention. Brief Case Example: Miss K . is a 74 year old patient suffering from COPD. Since her mother's death some 20 years ago she has lived alone with a poor social network. Her niece assists her with all technical arrangements, but the patient's family does not supply a social support system. Miss K. is attached to an oxygen concentrator machine for most part of the day and is very limited in selfhelp activities. She received help several hours a day from community resources. A year prior to her admission to a chronic hospital setting, Miss K. was repeatedly admitted to hospital. She expressed severe feelings of anxiety leading to attacks of breathlessness. Because she lived alone, she feared that during an attack she would have no person to help her and she would be left to die. Often just the thought of dying could bring on an anxiety attack, leading to
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breathlessness and hence hospitalization. Due to the patient's lack of compliance and co-operation, and her non-supportive social network, she was unable to be discharged to her home environment and had to be placed in institutional care.
Depression The other most persistent psychological fmding in the COPD patient is depression characterized by pessimism of outlook and feelings of hopelessness and worthlessness (Sandhu, 1987). Frequent sadness, tearfulness, lack of motivation, suicidal ideation, loss of appetite and sleep have been used as a description of the depressive feelings of the COPD patient (Agle and Baum, 1973). For example, again in the study conducted by Yellowlees (1987) it was found that as many as 16% of the COPD patients were diagnosed as suffering from depression. However, sometimes the clear cut diagnosis of depression is difficult to make because of the physical symptoms manifested by the illness itself. These patients are often thin, have sleeping problems because of breathing difficulties, and are therefore often tired as a result of their illness. This compounding effect may lead to difficult diagnostic procedures. As the illness progresses the patient becomes more depressed, especially as he becomes more and more isolated and more embarrassed as a result of his cough and sputum production (Dudley et al., 1980). In the late stages of the disease, or following a severe attack, some COPD patients focus their attention on dying and many even fantasize about the circumstances of their death and its impact on others. This may prevent them from leaving the hospital or even attempting to function to a limited degree independently. The slow course of the disease may result in a prolonged absence of a mourning reaction in the experience of many COPD patients (Post & Collins, 1981-2). They could have difficulty in accepting their physical and psychological losses yet are often unable to express these losses for fear of the effect this will have on their breathing. The COPD patient can be described as living in an "emotional straight-jacket" (Yellowlees et al., 1987). As in the case of anxiety, the accurate diagnosis of depression is necessary in order to implement the proper management and treatment interventions.
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Defense Mechanisms Frequently Used by COPD Patients Clinical experience and some empirical studies have revealed a strong tendency for COPD to employ specific defense mechanisms. Any sudden emotional shift may lead to a change in the physiological condition which can aggravate the rate of breathing. Therefore, the COPD patient attempts to protect himselfherself from this situation by using several prominent defense mechanisms-denial, repression, suppression, projection and displacement (Agle & Baum, 1977). Denial: By the time the COPD patient is diagnosed he may already be in the moderately disabled stage. Because of the silent nature of the illness, the patient's complaints are often ignored. He or she may, in turn, deny hisher own symptoms for fear of facing his disability and the progressive deterioration. An example of this mechanism could be the patient denying that smoking has anything to do with his physical state or denying the fact that his condition has deteriorated from the moderate to severe stage. Repression or Suppression: These two mechanisms aid the patient to avoid dealing with the emotional difficulties and to cope with the daily routine. In this way the patients refuse to confront their illness and tend to take life as it comes. For example, the patient will refuse to change hisher work load despite deterioration in hisher physiological condition. Projection or Displacement: The COPD patients may have a tendency to place the blame on others and not take responsibility for his actions. They can become resentful of the hospital staff and blame them for their lack of improvement. Brief Case Illustration: Mrs. F. is a 73 year old married COPD patient who lives at home, in close proximity to her two daughters. She receives attendant help at home in addition to the help she receives from her family system. She has a troubled relationship with her husband, and during hospitalization often expresses an angry and demanding attitude towards the staff. Always, close to discharge, Mrs. F. increa~esher physical complaints, becomes nonco-operative with the nursing staff and non-adherent to her attending physician. She always looks for reasons not to go home and blames all her care-givers for her present condition. Social work intervention is necessary at this stage, often in consultation with the
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medical team, in an attempt to help the patient face his own reality situation. THE IMPACT OF COPD ON SOCIAL ROLES
Literature on the impact of COPD on various life domains covers a diversity of necessary and unavoidable changes in the life style of the patients and their environment. When chronic illness causes disability it becomes a family problem, affecting the development goals of other members of the family or the family as a whole. One of the goals of the family is to deal with these difficulties with emotional economy. In the "illness life cycle," due to many developmental changes, the family may move from a centripetal crisis phase to a centrifugal chronic phase and back again (Roland, 1987).
Quality of Life of COPD Patients Quality of life of the COPD patient within the development of his disease has been a subject of discussion for theoreticians and clinicians. McSweeney and Clough (1987) describe similar models of quality of life of COPD patients. Clough defines five psycho-socia1 areas where COPD may affect not only the patient, but also hisher family. 1. Wage-earning abiliry-as a result of which there is a drain on the financial resources of the family. Ultimately the social status of the family may be affected as well as its ability to maintain its quality of life on the same level as before the illness. 2. Roles within the family are altered-the previous homeostasis is altered leading to a range of different adjustment patterns within the family. Expected spouse roles may have to be interchanged and this may cause conflicts or miscommunication within the family. 3. Diminished independence-the family is no longer able to function as a complete family unit outside the home as the patient becomes more and more dependent on the oxygen machine and therefore less mobile. Family members are involved in direct care as the patient's ability to care for himself is decreased. 4. Decrease of social activities-social activities are reduced in general and social losses are felt as fewer visitors visit the home.
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In addition, family members may be restricted in their own recreational activities. 5. Oxygen concentrator and its effects on the family-in the later stages of the disease, due to pulmonary impairment, the patient uses the oxygen concentrator for most parts of the day. The machine becomes a permanent fixture in the patient's home, which may lead to difficulties and tensions in the family system. It seems that the oxygen concentrator becomes a new entity in the family's interaction with the patient. This issue deserves further elaboration and has not received enough attention in the literature. For the patient the use of oxygen represents the end of a useful and independent existence (Petty, 1981). The patient's premorbid personality and family support system will certainly affect how he/she adapts to the machine at home. From the medical point of view, in comparison to the haemodialysis machine, the oxygen concentrator is cheaper to run and patient selection criteria is clearer and easier to o b t a i n - ~ o m epreparation and training for the machine is minimal and manipulation of the machine is relatively simple. Unlike the haemodialysis machine, the oxygen concentrator is controlled by the patient himself. Most haemodialysis patients do not require daily haemodialysis, while the COPD patient needs the machine for long stretches daily and therefore his encounter with the machine is more frequent, affecting his already diminished independence. However, feelings of dependency, growing as the patient's physical state weakens, may lead to a lack of locus of control, feelings of helplessness and anger either directed internally or projected out. The COPD patient is dependent for hisher very life on the oxygen concentrator and the very presence of the machine represents his restricted activity and decreased sense of worth. This situation can only increase already existing fears and feelings of anger and dependency that are often projected onto the family. The care-giver in turn can also feel helpless, resentful and angry, which may lead to feelings of guilt often followed by over-protectiveness (Sandhu, 1986). From a therapeutic point of view, the stage where the patient is confronted with the fact that helshe needs home oxygen demands
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special intervention both by the social worker and the physician. This confrontation with the "life saver" may be a crisis situation for both the patient and hisher family. The patient has to deal, maybe for the fust time, with the fact that hisher condition, and in particular hisher breathing difficulties, can only deteriorate. Additional fears may become real issues4ectricity failure can lead to death, the initial fear of being alone becomes exacerbated and hisher dependence on his environment is increased.
Effects of COPD on Marital and Sexual Functioning Since COPD develops in "middle-age" and later years, it should be remembered that patterns of marital and sexual relationships are usually well established and the couple have developed accepted forms of sexual practice. However, due to the gradual physical deterioration of the patient, the impact of the disease could be expected also in the area of sexual functioning, both physically and psychologically. The issue is rarely touched in empirical research and most of the knowledge is based on limited clinical experience (Conine and Evans, 1981; Agle and Baum, 1977; Dudley et al., 1980; Sandhu, 1986; Clough, 1987; Foxall et al., 1987). Moreover, both physicians and social workers prefer to avoid this sensitive and delicate issue and as a result this important area of life is often neglected. Physical effects of COPD are relevant to sexual activity in three areas: (i) Weariness is common among COPD patients; (ii) dyspnea is heightened by the pressure against the chest of the bottom partner in a top/bottom intercourse position; (iii) bronchospasms which produce coughing can be activated by the increased demand on the respiratory system (Conine and Evans, 1981). Fear of being unable to perform due to the psycho-medical issue coupled with the need to make frequent intervals during intercourse can inhibit sexual activity. COPD may be associated with male impotence in the absence of other commonly known causes (Fletcher and Martin, 1982). Male and female patients experience their sexual difficulties differently because of the different positions and socio-cultural
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demands undertaken in coitus. Males usually have to have an erection to perform the sexual act and therefore may be affected by the decreased libido, fear of impotence or inhibited sexual activity. The common expected male-superior position in coitus is often too strenuous if the COPD partner is the male, which can lead to dyspnea and/or bronchospasms. The healthy male partner of the female COPD patient may also experience impotence due to his fear of hurting his partner. Sometimes, due to the same reasons as the male patient, the female COPD patient also tends to suffer from a decreased interest in sexual intercourse. In addition, in coitus, the female patient may be affected both in the superior or active position and in the inactive position in intercourse due to the pressure on her chest. Schover and Jensen (1988) report that COPD has a negative impact on physical aspects of sexuality both for male and female patients. However, sexual performance is still an important aspect to the COPD patient and his spouse as the patients' other role losses have been so greatly enhanced by their pulmonary dysfunction. Intervention in this area is of prime importance because this is one area in which the patient can be assisted to regain some of his previous functioning. Psycho-educational intervention techniques are recommended in an attempt to minimize the stressful effects of intercourse. The role of the mental health practitioner is to identify the needs and difficulties and in a combined approach with the medical team, offer the appropriate intervention methods. For example, a night's rest, abstinence of heavy meals and use of an inhalator before sexual intercourse can be useful information. Rest at intervals during the physical act, masturbation and new sexual positions can be adopted. The use of oxygen before and during the act and/or medication prior to sexual intercourse can be effective in preventing bronchospasm (Conine and Evans, 1981). Improving this important area of functioning can be satisfying to both the patient and his spouse.
PSYCHO-SOCIAL TREATMENT METHODS AND GOALS As in other chronic ilh~esses,many treatment methods are employed in dealing with the psycho-social needs of the COPD pa-
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tient. The range includes individual, marital and family therapy, group work and patient education programs among others. Instead of simply reviewing these methods, we have adopted a different approach in which we attempt to assess the goals of the intervention rather than the type of treatment offered by social workers and other mental health professionals. Based on the literature presented in the previous pages, we have identified five main areas in which psycho-social intervention may be required. These include: 1. Compliance of the patient with the medical team in an at-
2. 3. 4. 5.
tempt to teach the patient how to participate in hisher management as an active partner with hisher physician. Development of new attitudes through an increase in locus of control over physical, respiratory and emotional functioning. The advancement of a more positive approach to life changes. Modification of interactions between the patient and hisher social environment. The working through of the many losses entailed by COPD.
Compliance: It appears that roughly only half of the patients with chronic illnesses follow medical directives. There are several reasons for this. First, each patient has his or her own culturally determined health belief model that affects his or her willingness and motivation for co-operation. Secondly, psycho-dynamic issues related to dependency or shame and guilt about the disease may also affect the patient's ability or desire to comply. Often over-protection of families, leading to infantizing the patient, may also lead to noncompliance (Backman, 1989). Moreover, the quality of the patient/doctor relationship will probably greatly influence the compliant attitude of the patient. Although not emphasized as a major issue in the clinical intervention with the COPD patient, the existence of this problem should be assessed and intervention be made accordingly. Development of new at~itudesthrorrgh an increase in locris of control over physical, respiratory and em)tionalfiinc~ioning:(a) Goal setting is recommended by Dudley et al. (1980) for those patients who need to regain confidence after a frightening attack of dyspnea.
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Individualized goals aimed at optimal activity level, independence and self-care offer the patient encouragement and hope and give hirnlher a sense of control after a disturbing experience. (b) A patient psycho-edircation program was instigated by Clough et al. (1987). This program wherein a multi-disciplinary team conducted a four day workshop encouraging patients to share coping strategies with each other e.g., how to deal better with feelings of anger. Assessment three and a half years later showed that the combination of doctors and physiotherapists was the most effective combination in treatment with the COPD patient, allowing him to take control of hisher physical changes through breathing. restraining, exercise and reconditioning. (c) Sex therapy-as has been previously discussed, the patient should be encouraged to regain control of his body through education and counselling by using techniques like altering positions and correct medication. (d) Breathing techniques, meditation, relaxation training and biofeedback are methods to alleviate anxiety and are particularly relevant to the COPD patient. These exercises give the patient a feeling of mastery over his anxiety and fears and allow him to engage in activities that might give more meaning to his existence. (e) Cessation of smoking campaigns are an important preventive treatment program. This is a method used to bring to light the hazards of smoking. It is educational in nature, used especially to prevent the COPD patient from smoking. Patients see themselves as having caused their own illness through smoking (Yellowlees, 1987) and this program can give them a feeling of mastery. It is unclear to what extent cessation of smoking will slow the progression once the patient has moderate COPD symptoms, although several investigations have indicated some benefit (Rosser et a]., 1983). The advancement of a more positive approach to the acceptance of l f e changes-A Life Change Monitory recommended by Dudley et al. (1980) includes the use of the HOMES-RAHE Social Readjustment Rating Scale wherein both the patient and his physician or social worker can monitor, in advance, those life changes which will be additional stressors on the patient. The culmination of stressors leading to strain can be appraised on the Rating Scale and the patient can be assisted to either avoid or alter these potentially threatening events or find social support systems to help him con-
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front the experience. For example, in cases where the health of the care-giver is affected and deterioration is threatened, if identified in time, appropriate measures may be planned to prevent a decrease in quality of care. The introduction of appropriate attendant care and/or respite care services may be utilized. In other instances where the illness leads to major Life changes, the social worker may intervene by assisting the patient in dealing with important decisions such as the need for permanent institutionalization. Finally, when death is imminent the patient and his family can be assisted to deal with the im~licationsthereof. Wills can be written out accordingly and the patient could be encouraged to deal with unfinished business with his or her family or friends. Modification of interactions between the patient and his social environment may include several techniques dealt with under the umbrella title of behaviour modification or behaviour therapy. Positive reinforcement in maintaining social contacts, relaxation exercises to reduce social anxiety, systematic desensitization for the fear of social rejection, assertiveness training such as how to say "no" to those who smoke in the patient's presence and role playing of marital/social interaction are all part of this therapeutic approach. These techniques enable the patient to be more at ease with his surroundings and benefit the most from his interactions with family and friends. The working through of losses entailed by COPD can be dealt with in different ways: (a) Psychotherapy offers the opportunity to the patient to deal with the psycho-dynamic issues of the illness. This includes the experience of loss of physical health with its ramifications on the patient including emotional withdrawal and the fear of death (Rosser et al., 1983; Agle and Baurn, 1977; Dudley et al., 1980; Yellowlees, 1987).A comprehensive study undertaken by Rosser et al. (1983) drew the conclusion that psycho-analytic techniques were less appropriate for the COPD patient when compared to a supportive group or a non-treatment control group. However, psychotherapy with the challenge to the therapist to get in touch with the most significant feelings of the COPD patient still remains as an optional form of treatment appropriate for certain COPD patients. This is especially relevant where the patients are suffering from a severe form of depression or anxiety. [For illustration
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of this technique, see examples of case studies, Yellowlees (1987)l. (b) Marital or familypsychotherapy-this is particularly appropriate for those COPD patients where the family roles have been altered and impaired (Post and Collins, 1981-2). This method enables the couple and/or family to gain insight into the losses occurred as a result of the illness. Finally, it is worthwhile to emphasize that although COPD is a chronic and a gradually debilitating disease, psycho-social intervention is not a necessity for every patient all the time. Social workers are advised to clearly define which goal is appropriate to the individual patient and hisher family in each stage of the development of the disease and then to intervene accordingly.
REFERENCES Agle, D., Baum, G. and Chester, E. (1973). Multidiscipline treatment of chronic pulmonary imufficicncy: Psychological aspects of rehabilitation. Psyclwsomatic Medicine, 35, 4149. Agle, D., and Baum, G. (1977). Psychological aspects of chronic obstructive lung disease. Medical Clinics of North America, 61, 749-758. Rackman, M. (1989). The psychology of rlte physically ill patient. New York and London, Plenum Ress. Beck, G., Scott, S., Tcague. R., Perez, F. and Brown, A. (1988). Corrclatcs oC daily impairment in chronic obstructive pulmonary disease. Relrabilitarion Psychology, 33(2), 77-84. Bordow, R. and Moser, K. (1986). Chronic obstructive pulmonary disease, clinical and laboratory manifestations, pathophysiology and prognosis. In Moser, R. (Ed.) Manual o/ clinical problems. in pulmonary medicine. Boston: Little Brown Company. Clough, P., Harnisch, L., Cebulski, P. and Ross, D. (1987). Method for individualizing patient care for obstructive pulmonary disease patients. Healrh and Social Work, 12(2), 127-133. Conine, T. and Evans, J. (1981). Sexual adjustment in chronic obstructive pulmonary disease. Respiratory Care, 26(9), 871-874. Dudley, D., Glascr, E., Jorgensson, B. and Logan, D. Psychosocial concomitants to rehabilitation in chronic obstructivc pulmonary disease: part one. Psychosocia1 and psychological considerations. Chest, 77(3), 413420. Fletcher, E. and Martin, R. (1982). Sexual dysfunction and erectile impotence in chronic obstructivc pulmonary disease. Chest, 4(4), 413-421.
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Foxall, M., Ekberg, J. and Griftith, N. (1987). Comparative study of adjustment patterns of chronic obstructive pulmonary diseasc patients and peripheral vascular disease patients. Heart and Lung, 16(4), 354-363. Francis, P.B. 1983). Acute respiratory failure in obstructive lung disease. The American Clinics of Norlh America, 67(3), 657-668. Karajgee, B., Rifkin, A., Doddi, S. and Kolli, R. (1990). The prevalence of anxiety disordcrs in paticnts with chronic obslructive pulmonary disease. American Journal of Psychiatry, 147, 200-201. Kinsman, R., Fernandez, E., Schocket, M., Dirks, J. and Covino, N. (1982). Multidimensional analysis of the symptoms of chronic bronchitis and emphysema. Journal of bchavioural Medicine, 6(4). 339-357. Kinsman, R., Yaroush, R., Fernandez, E. and Dirks, J. (1983). Symptoms and experiences in chronic bronchitis and emphysema Cliest, 83(2), 755-761. Levinson, D. (1978). The seasom of a man's lve. New York, Ballantine Books. Manson, R. and Rushing, J. (1981). Respiratory tract and mediastanurn. In Krupp. M. and Chatton, M. (Eds.) Current medical diagnosis and treatment. New York: Lange Medical Publications. McSwccncy, A., Grant, I., Heaton, R., Adams, K, and T i s , R. (1982). Life quality of paticnts with chronic obstructive pulmonary disease. Archives of It~ternalMedicine, 142, 473-480. Petty, T. (1986). Health, sex and better quality of life for your chronic obstructive pulmonary disease patient. Medical Aspects of Human Sexuality, 20(8), 70-85. Petty, T. (1981). Home oxygen in advanccd obstructive pulmonary disease. The Medical Clit~icsof North America, 65(3), 615-627. Phillips, B. (1990). Chronic obstructive pulmonary disease. In R. Rakel (Ed), Conn's current therapy. Philadelphia, U.S.A. Saunders Company. Post, L. and Collins, C. (1981-2). The poorly coping chronic pulmonary diseasc patient: A psychotherapeutic perspective. International Journal of Psychiatry in Medicine, 11(2), 173-182. Roland, J. (1987). Chronic illness and the life cycle. Family Process, 26,203-221. Rosser, R., Denford, J., Heslup, A.. Kinston, W., Macklin, D., Minty, K., Moynkhan, C., Muir, B., Rein, L. and Guz, A. (1983). Breathlessness and psychiatric morbidity in chronic bronchitis and emphysema: A study of psychothcrapcutic managemenl. Psycliological Medicine, 13, 93-110. Rowlct, D. and Dudley. D. (1978). Chronic obstructive pulmonary disease: psychosocial and psychophysiological issues. Psycliosomatics, 19, 273-279. Sandhu, H. (1986). Pulmonary rehabilitation. Clinics in Chcst Medicine, 7(4), 544-561. Schover, L., and Jcnsen, S. Sexuality and chronic illness. New York: The Guilford Press, 1988. Strachey, J. The standard edition of thecomplete psychological works of Sigmund Freud. London: The Hogarth Press Limited, 1959. Williams, S.J. and Bury, M.R. (1989). "Breathtaking": The consequences of chronic respiratory disorder. Ititernational Disability Studies, 1I, 114-120.
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Wise, T., Schiavone. A. and Sitts, T. (1988). The depressed patient with chronic obstructive pulmonary disease. Gcneral Hospital Psychiatry, 10. 142-147. Yellowlees, P., Alpers, J.H., Bowden, J.J., Bryant, G.D. and Ruffin, R.E. (1987). Psychiatric morbidity in patients with chronic airflow obstruction. The Medical Journul of Ausfruliu, 146, 305-307. Yellowlees, P.M.(1987). The treatment o f psychiatric disorders i n patients w i t h cluonic airways obstruction Tlic Mcdical Journal ofAustralia, 147, 349-352.
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