Please, Doctor, tell that to my wife!
Introduction
PATIENT A: A post-MI male patient in his forties, as part of a cardiac rehabilitation program, par- ticipated in a stress management group for men.
During a discussion of sexual issues the group leader presented a recently published report described in the newspaper under the heading
“Sex is good for post-MI men.” The patient’s comment was immediate and intense: “Please, tell that to my wife! She is so damned scared.”
PATIENT B: A man in his fifties had attended a stress management group program after his MI.
A few months after the program had ended, the participants of the group were invited for a follow-up session. By that time, this patient had to a large extent resumed his stressful lifestyle.
Half-jokingly he told the group what his son kept saying: “Dad, you ought to go back to that stress doctor!”
PATIENT C: A 60-year old woman still experi- enced angina after CABG surgery. This made it difficult for her to perform household work to the extent that she had been capable of previ- ously. In a cardiac rehabilitation group setting she was offered advice concerning alternative ways of, in this case, cleaning the windows of her house. For instance, she was advised how she could best ask for help. She became very upset and offended by the idea, saying with tears in her eyes: “But I love window cleaning!”
33
Educating Cardiac Patients and Relatives
Gunilla Burell
279 PATIENT D: The wife of a young post-MI patient was terrified by the wish of her husband to go sailing alone in his small boat. The patient was well recovered, and sailing had always been his great interest in vacation times. He was puzzled by his wife’s reaction because she could not state a reason for her anxiety. However, the wife confided to a psychologist in the cardiac care unit that her fear came from a comment from a cardiologist. When the patient, her husband, was released from the ward after his acute event, the cardiologist told the wife: “One more MI like that, and he’s dead.” In her mind, sailing would kill him. She simply could not tell her husband this terrible verdict.
Which conclusions can be drawn from these clin- ical observations? One key message is that edu- cating patients and spouses with the purpose of optimizing rehabilitation and secondary preven- tion is not just a matter of informing about facts.
It is a process where professional caregivers must be sensitive to the social and emotional reality of the patient and spouse. Caregivers must also be very aware of the communicative interplay and the fact that both patient and spouse cognitions and interpretations may be very different from those of the professional. To health professionals, cardiological and surgical procedures are rela- tively routine aspects of their daily work.
However, these procedures are not routine to the patient and his or her family – to them, it is a pro- foundly life-changing experience, and emotion- ally and spiritually a brush with death.
The first patient described above expressed a very common problem in the readjustment of cardiac patients. The research on sexual activities and satisfaction in CHD patients is scarce,1espe- cially for female patients. Sexual activity is more common than previously estimated, even in rela- tively older patients. and can be an important con- tribution to a patient’s quality of life. For instance, Addis et al.2 report that in a sample of post- menopausal women with CHD (mean age 67 years), almost half of them were sexually active, although a majority experienced one of several sexual problems. Fear in the spouse can prevent resumption of joyful sexual activity. However, this issue is rarely discussed with patients and their spouses, despite the fact that erectile dysfunction is very common in male CHD patients.1 The obstacle to discussion of sexual issues is usually not that of the patient.3
The situation of the stressed patient post-MI – the second case – entails at least two important observations. The first is related to the meaning of social support for successful rehabilitation.
Spouses and family members of patients typically monitor carefully the patient’s symptoms and behaviors. This can be of great value if the family member is actively included in the rehabilitation process.4The second observation from this case is that long-term maintenance of the new lifestyle is often difficult. Life is ever-changing, thus present- ing threats and challenges to the patient’s new healthy lifestyle. Therefore, cardiac rehabilitation and secondary prevention programs must contain strategies for long-term maintenance in the face of changing circumstances in life.
The woman who “loves window cleaning” is an illustration of the very different meaning that activities can have for patients and caregivers. An activity may seem trivial to the professional care- giver and the concerns may be responded to with simplistic advice for solutions. However, to the patient in this case, being able to clean her windows had the symbolic meaning of autonomy and self-esteem. Her reaction expressed her grief for the loss of so much that had been important and valuable to her. Professionals involved in cardiac rehabilitation need to refrain from giving premature advice in complex situations. Instead they need to listen carefully so that patients can reflect on the meaning and emotional significance of the problem they are addressing.
The wife who was terrified of her husband’s sailing is an example of poor communication.
The views of health professionals, particularly physicians, are extremely important for patients, especially in the vulnerable situation of cardiac care. Hence communication needs to be clear and realistic while also being supportive, and ongoing.
Overview of the Chapter
This chapter will focus on the role of spouses and family support in the rehabilitation of patients with coronary heart disease (CHD). It will describe some of the effects of CHD and its rela- tionship to the rehabilitation process and review the importance of social support in the recovery, particularly how the interaction between patient and spouse may have an impact on rehabilitation outcomes. The chapter will be summarized in a set of brief recommendations.
Cardiac rehabilitation can be defined as the restoration of physical, psychological, and social functions after a cardiac event. The level of function may not be the same as before the event; however, optimal capacity and quality of life should be the goal. Secondary prevention can be defined as the development and practice of long-term strategies aiming at minimizing symptoms, preventing recurrence, and hopefully compressing morbidity and prolonging life. Such strategies entail healthy lifestyle, behavioral and emotional coping skills, stress management, problem solving, and adherence to medica- tion. The involvement of spouse and family members in the rehabilitation has the potential of facilitating the process and improving the outcome.
Psychological Reactions to Coronary Heart Disease
A coronary event for most patients and their families is a traumatic experience with major consequences for daily life. Typically, to be diag- nosed with CHD causes fears, anxiety, and depres- sion,5 and has implications for the dynamics within the family.6Research shows that prognosis may be more related to emotional factors than to
the seriousness of the event. Outcome of rehabil- itation is better predicted by emotional factors than by anatomical features and size of infarc- tion. Thus, anxiety and depression may present major obstacles to successful rehabilitation and secondary prevention. A comprehensive cardiac rehabilitation program should allow a forum for patients to share experiences with other patients in similar situations. The opportunity to reflect on emotional reactions usually has a normalizing effect, reducing the uncertainties related to feel- ings that seem alien and strange. Patients learn that such previously unknown strong emotional reactions are normal in this stage, and that such negative emotions will not last forever. A sound
“crisis intervention” can prevent many of these emotional obstacles to further rehabilitation from occurring. Often, the spouse experiences emo- tional reactions that are at least as strong as those of the patient.5,6However, he or she may be hesi- tant to express fears and concerns, in order not to
“disturb” the patient. Thus, spouse reactions need to be directly addressed.
The Meaning of Social Support
Social support may have a direct effect on the course of cardiovascular disease.7,8There is evi- dence that socially isolated CHD patients are at significantly increased risk of recurrence.9 The most important source of social support for a cardiac patient is the family, particularly his or her spouse. “Social network” refers to the number of people available to an individual for personal inter- action, while “social support” refers to the quality and effects of interactions. Generally, research shows that for male patients, both social network and support is health-enhancing. For female CHD patients, on the other hand, a vast social network that entails many demands and duties may be a psychological burden, and lead to health hazards.10The reasonable interpretation of these data is that it is the non-directional (“just being there”) positive quality of the support that con- tributes to health, and that this characteristic is sometimes lacking for women in traditional gender roles.11
Different forms of social support have been described, such as emotional, appraisal, informa- tional, and instrumental support.12 Research
shows that different forms of social support may have differential effects in terms of benefit for a CHD patient. For instance, “too much”
instrumental support given by the spouse to the patient could create over-protectiveness and decrease the patient’s self-efficacy and own initiatives in rehabilitation. A randomized inter- vention study by Berkhuysen et al.13showed that over-protectiveness by a spouse, as assessed by the patient, counteracted self-efficacy and thus decreased patients’ confidence in their ability to make positive changes. Itkowitz et al.14 showed that too much attention by the spouse to cardiac symptoms may contribute to negative outcomes of rehabilitation. Selective focus on the expression of CHD symptoms may unwittingly serve to reinforce emotional distress.
Two conclusions can be drawn from the above.
First, positive social support is important for the prognosis of CHD patients. This entails emotional (understanding and acceptance of feelings), appraisal (good advice and opportunity to discuss how to manage the new life situation), informa- tional (knowledge about CHD, risk factors, and lifestyle), and instrumental (help with practical problems). All of these aspects should be included in comprehensive cardiac rehabilitation and secondary prevention. Second, in order for spouses and family members to be able to provide adequate social support, they themselves need social support. There is evidence that when spouses exhibit higher levels of anxiety and depression and lower sense of control than the patient, the patient’s psychosocial adjustment to illness is adversely affected.6 It is a good investment to offer some structured support to spouses and family members of CHD patients.
There are at least three reasons for this.
First, family members are deeply affected by the cardiac event or intervention, and family dynamics and roles may change considerably.
Those reactions need to be dealt with because of the risk that they would otherwise impact negatively with treatment and rehabilitation efforts. Second, spouses and family members need information and knowledge about the man- agement of the disease, so as to understand what will happen to the patient. Third, CHD families may need instrumental support and help to deal with social and financial consequences of illness.
A support program for spouses and family
members has the potential to aid recovery and rehabilitation considerably.14
Clinical experience indicates that interventions with spouses do not need to be very extensive in most cases. Adequate information, opportuni- ties to ask questions and reflect on emotional reactions, and sharing experiences with other spouses and family members on a few occasions in group counseling can be a very cost-effective use of time. Trained and experienced cardiac nurses are well suited to conduct such support groups. In our experience, both groups for spouses only and groups for patients and spouses together are very much appreciated by the participants.
Information Is Not the Whole Solution
In order to obtain effects on prognosis and man- ifestations of the disease, cardiac rehabilitation (CR) and lifestyle programs must achieve real and concrete behavior change (diet, exercise, coping with stress, and adherence to medication). Tradi- tionally, in health promotion programs, too much emphasis has been put on information – it is assumed that if patients know what is right to do, they will do it. Behavioral science evidence, in combination with conclusions from many lifestyle interventions, shows that this is rarely the case.
Those who are very well informed, nonetheless, could behave in self-destructive ways. Thus, CR and lifestyle interventions should not rely on information transmission only. Rather, one could argue that information works best when the indi- vidual has already been supported to change behavior. Gradually adopting a new behavior leads to change of attitudes, and to the awareness that relevant information and knowledge is needed to assist and support the change process.
The patient will then seek and integrate informa- tion that he or she sees as personally relevant – thus teaching becomes true learning. The effects of information will be much more potent when it is linked to a behavioral intervention, where infor- mation and behavior change mutually reinforce each other. Thus, effective CR and lifestyle pro- grams must be built on knowledge in the CR team about behavioral science and the dynamics of behavior change.
Who Should Be Referred?
Resources for cardiac rehabilitation and patient education may be limited, depending on local circumstances. It may also be the case that not all CHD patients are equally in need of intensive pro- fessional support. It is therefore of clinical impor- tance to screen patients with respect to risk factors for prognosis. Screening for physiological and medical risk factors is covered elsewhere in this book. In the context of patient education, screen- ing for psychological and psychosocial risk factors are very relevant.
Numerous studies consistently show that psy- chological and psychosocial factors contribute to increased risk for CHD. A cluster of negative emo- tions are related to increased risk, such as depres- sion, anxiety, hostility, type D personality. Among psychosocial risk factors are low socioeconomic status (SES) and social isolation. These have been described in detail in Chapter 30. When CHD has manifested itself, the risk factor pattern is more complex, and findings are less consistent.
However, the overall conclusions from studies point to hostility, depression, low SES, and social isolation contributing to increased risk for recur- rence. Depression in particular has received considerable attention in recent studies.15 These issues are discussed in other chapters, particularly depression (Chapter 32) and stress management (Chapter 34). Research has shown that such psychological risks are more prevalent among women. Since they are also generally older, the presence of social isolation and concomitant illness is more likely. For instance, more older women will be widowed or for other reasons without an intimate other to support them in their rehabilitation.
Ades et al.16 showed that older women were less likely to enter cardiac rehabilitation than were older men. This was explained primarily by a greater likelihood of primary physicians to strongly recommend cardiac rehabilitation to men, but older women were also more likely to report having dependents than were older men.
Thus these women in need of healthcare to maxi- mize their own health and recovery were also more likely than men to also have the “burden” of caring for someone else with healthcare needs.
These US findings have also been found in a
Swedish study – caring for a dependent husband often made it difficult for female patients to attend rehabilitation programs.11Once in CR programs, both groups improved aerobic capacity similarly.
Thus, older female coronary patients are less likely to be referred for cardiac rehabilitation, despite a similar clinical profile and improvement in functional capacity from the training component.
Similar results have been obtained in other studies; for instance Grace et al.,17reported that in a prospective study of CR referral and participa- tion patterns, only 30% of participants were referred, with significantly fewer women being referred. Thus, female gender is a marker of increased risk for psychological ill-being and worse prognosis. Studies show that referral to CR by the cardiologist is one of the strongest pre- dictors of actual participation in a CR program.
The clinic may very well have adopted procedures where different professionals can refer to CR, such as cardiac nurses or physiotherapists. However, it is very important to make it clear to the patient that the physician is actively promoting his or her participation in the program.
To conclude, patients should be screened for negative emotions and psychosocial profiles known to be associated with poorer outcomes, since such factors could create obstacles to par- ticipation and benefit from cardiac rehabilitation and education. Social isolation means a lack of social support in difficult times for a cardiac patient. Patients with a psychosocially vulnerable profile need more active support interventions.
The presence of a spouse or other close family member can be a particularly important asset. In order for them to contribute positively to the reha- bilitation of the cardiac patient, they in turn need information and emotional support. Thus, some
“diagnosis” of the spouse interaction is a valuable source of information for involving spouses.
Recommendations
Family Support
Spouse and family support can be offered in a group format in cardiac rehabilitation programs.
One option is to offer educational courses for patients and spouses together, with different pro- fessionals participating in sessions as appropriate
(e.g. cardiologist, nurse, physiotherapist, psychol- ogist). These courses consist of 6–8 sessions and give opportunities for questions and discussions on topics like diet, exercise, stress, emotional reac- tions, etc. Another option is group meetings for spouses only; typically with 6–7 participants over 6–10 sessions. These groups focus more on the spouses’ own reactions and adjustment. Such groups are not psychotherapy but more like self- help groups. In some countries, non-governmen- tal organizations (NGOs) for patients exist which are very active and often have a high profile.
Typically, such organizations offer educational and social activities which are available to members. Thus, they give opportunities for long-term social support and maintenance of lifestyle changes in a way that clinics cannot do.
Active cooperation between cardiac rehabilitation personnel and such organizations is strongly recommended as a way to provide for the wider needs of patients and their families.
Communication
Traditionally, healthcare professionals have adopted a fairly authoritarian style of “providing”
information and giving structured advice.
However, adherence to lifestyle prescription is discouragingly low (see Chapter 35 on levels of non-adherence to professional advice).
Patients who need to change lifestyle go through a series of motivational stages,18and may be in the ambivalent stage and not yet ready to make the decision to change. Premature advice given in this situation may create opposition. To conclude: first, ask questions, do not give advice unless the patient asks for it; second, assess the patient’s motivational readiness for change.
Development of motivation may very well be the first change target, including the readiness to open up communication with spouse and family and allowing them to be involved.
Teamwork
Education, behavior change, and recovery from a serious medical condition takes time. Compre- hensive CR programs need to offer frequent sessions over an extended period of time. In most clinical situations, it is not feasible that the
rehabilitation. This gives a much better under- standing of how the family can support progress.
PATIENT C: The women who was grieving her window-cleaning needed to be listened to by a professional person who understands how to look and listen under and beyond the surface.
Again, no psychotherapy sessions are needed for this, just an awareness that often listening with patience and refraining from advice is the best therapy for troubled emotions.
PATIENT D: The wife of the sailing husband needed more adequate information. A study by Moser et al.6found that patients and spouses after an acute MI identified information as the most important need; however, information requests were not well met by physicians and nurses. A number of studies have identified information needs such as symptom management, risk factors, pathophysiology, diet, medication, etc.20 Since information needs vary with the course of recov- ery, the professional person providing the infor- mation must be sensitive to what is most relevant to the particular patient and spouse on that par- ticular occasion. The best and easiest strategy is to just ask “what is it that you need to know?”.
To conclude, for professional caregivers, too, education certainly has its place. It should be noted, though, that in most cases what is needed is not psychotherapy expertise in any traditional sense. The key issue is to understand behavioral dynamics and motivational processes, and to apply one’s own communication skills. This will provide the best possible atmosphere for cardiac patients and their spouses to develop empower- ment and optimism about the future.
References
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physician is the one who conducts such group interventions. However, teamwork is well estab- lished in work with cardiac patients. Cardiac nurses, physiotherapists, dieticians, psychologists, social workers, etc. are very suitable to conduct this type of extended program. From our own and others’ clinical experience with education and training of personnel, I would like to emphasize three criteria for the selection of staff for this work. The first requirement is considerable expe- rience with cardiac patients, in order to have insight into and empathy with the realities of cardiac disease. The second is a reasonable degree of personal maturity, in order to maintain profes- sional integrity and stability when dealing with profoundly emotional and spiritual issues. The third is special education, training, and supervi- sion in the work. It is not something “anyone can just do.” It is not lecturing. Helping people change is a specialist undertaking. It takes expertise to recognize, understand, and work with behavioral and emotional dynamics in other people. Doing it the wrong way can prove fatal.19
Back to Our Patients’ Needs
PATIENT A: There are several fairly simple reme- dies for the first man. It helps for him to share experiences and concerns with the other men in his stress management group. Further, to reduce some anxiety in his wife, she can be offered an opportunity to express her thoughts, either in a group of spouses or in consultation with a cardiac nurse. The cardiologist or nurse may also meet with the two of them together. Some reassuring facts can be provided, but advice giving is not necessary. The therapeutic effect comes from the opportunity to express emotions and concerns.
PATIENT B: For stress management interven- tions, and other rehabilitation programs, follow-up “booster sessions” are a very good and cost-effective investment. With the basic program accomplished, the patient has a very good basis for maintenance even with only a few follow-up reminders. It is also highly recom- mended to offer family members a couple of occasions during the program to be informed about the contents of processes in the patient’s
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