British Medical Journal, Volume 316, Issue 7137: Page 1086-1088, 4 April 1998.
Peter Maguire, Colin Murray Parkes
This is the fourth in a series of 10 articles dealing with the different types of loss that doctors will meet in their practice
The articles in this series are adapted from Coping with Loss, edited by Colin Murray Parkes and Andrew Markus, which will be published in July.
The loss of body parts can have distinct but overlapping psychological consequences. These can be bodily changes - alterations in the way patients, their families, and others perceive their bodies - or changes of function - alterations in the activities and roles that they are able to carry out. Some types of surgery affect one more than the other. Thus a unilateral mastectomy may have little influence on a woman's functional ability, but the effect on her body image will usually be profound. Most types of surgery, however, affect both form and function. Losing a limb is a clear example of this.
The loss of body parts can give rise to grief for loss of body image or function, or both.
Anxiety, depression, and sexual problems are related to the magnitude and type of loss as well as the personal vulnerability of the patient.
Both avoidance of and obsessive preoccupation with the loss can be problematic.
Members of the caring professions can help to prepare people for the losses that are to come; reassure them of the normality of fear, grief, and their physiological consequences; introduce them to support groups; recognise and monitor any problems that may arise; and ensure that specialist help is given when needed.
The similarity between grief at loss of body part and grief caused by the death of a loved person has been clearly shown in comparative studies of the reaction to amputation of a limb and of widowhood.1 People with either of these losses were preoccupied with feelings of loss: bereaved people were missing the lost person and the amputees were missing the loss of physical attractiveness (loss of body image) or the occupational and other physical functions that could no longer be carried out (loss of function), or both of these.
Both groups said that they had difficulty in believing in the fact of the loss and tended to avoid reminders. Both groups reported having clear visual memories of the lost person or part, and many had a strong sense of their persisting presence. This was most pronounced in the amputees as the "phantom limb." As time passed, both the phantom limb and the phantom spouse tended to dwindle in significance. In the case of the amputee, the phantom limb seemed to merge with the prosthesis. In both groups, returning to work was associated with improvement in emotional symptoms, but only a third of amputees were able to work full time, often because of persisting arterial disease in the unamputated limb.
Both before and after amputation, impairment of mobility often gave rise to depression, which in turn delayed rehabilitation. Like the widows, those amputees who had a longstanding tendency to anxiety or depression (described as "sensitisers" by Horowitz2 coped less well and suffered more than others. So, paradoxically, did a group of amputees, mostly men, who showed little evidence of distress at the time of the amputation. Rigid and compulsively self reliant people, they seemed to be coping well at first, but 13 months later they were significantly more likely to have persistent pain in their phantom limb than other amputees.3 These compare with the "identification symptoms" reported by some bereaved people who show little grief at the time of a loss (Horowitz's "avoiders") but subsequently develop pains and other symptoms that often resemble those of the person who died. This suggests that the persistence of pain in a phantom limb may sometimes result from the repression or avoidance of grief at the loss.
Cancer commonly causes loss of bodily functions, damage to the body image, and threat to life itself. Fear and grief are likely consequences, and the surgical and medical treatments for cancer are often drastic and may give rise to further losses. In a psychological sense cancer invades families, for many lives are likely to be affected by this illness.
People vary greatly in the degree of confidence and flexibility with which they cope with threatening situations. Several studies show that the intensity of distress following the onset of cancer is determined by such factors and by the degree to which people feel that the losses caused by the illness have made them different from others. This, in turn, can give rise to depression, problems of sexual adjustment, and other psychological difficulties.4-6
One indicator of adjustment, sexual functioning, gives an idea of the magnitude of the problem. Comparative studies are few, but the effect on sexuality is surprisingly similar in cancers as varied as Hodgkin's disease and cancers of the testis7 and those of lung and prostate.8 In both of these studies, between a quarter and a third of respondents in each diagnostic group felt that they had become lastingly less attractive to their partners, and a similar proportion found that their sex drive was diminished.
Similar difficulties have been reported in women after mastectomy.9-11 Many women are dissatisfied with any prosthesis that they are offered, and they may attempt to avoid facing the painful reality of their loss by refusing to look at their chest wall or allowing their partners to do so. Some go to the lengths of covering mirrors, dressing and undressing in the dark, and minimising the time that they spend bathing. These activities reflect an avoidant style of coping. It is hardly surprising that these women tend to have lasting depression and loss of interest in sexuality.
Although the psychological consequences of surgical mutilation can be severe, they need to be set against the anxiety that patients may feel if they fear that their cancer has not been completely removed. Lumpectomy has often been advocated on the grounds that it is less psychologically traumatic than mastectomy, yet in one study it was associated with a slightly higher incidence of anxiety states and depression than mastectomy.10 Similarly, surgical treatment for carcinoma of the cervix has been shown to give rise to rather less reduction in sexual enjoyment and activity than treatment with radiotherapy.12 On the other hand, between a quarter and a third of men who undergo surgical castration for cancer of the testis think that the operation has made them less attractive and less able to achieve sexual satisfaction,12 whereas chemical castration for carcinoma of the prostate is associated with substantial improvement in psychological state.6
Whether or not patients with cancer have surgical treatment, they will usually have chemotherapy and radiotherapy, with loss of hair and other physical consequences. These are a further cause for loss of self esteem, grief, and depression.
Since cardiac surgery has little effect on the body image and most patients are likely to experience restoration of function rather than impairment, we might think that the psychological impact would be relatively slight and might be positive rather than negative. Yet in one study as many as 51% of elderly patients who underwent cardiac surgery had an adjustment disorder.13 Why should this be?
The answer seems to lie in the special significance of the heart as the symbol and source of life, an internal clock that ticks our life away until it stops, dead. Cardiac surgery brings home to patients the seriousness of their illness and causes fear. The incidence of preoperative distress correlates with the incidence after operation. In addition, open heart surgery may cause cognitive impairment, particularly in elderly people, making it harder for patients to cope with the emotional demands of the operation.
It is no surprise, therefore, to find that many cardiac patients remain fearful of exerting themselves and are apprehensive even when good cardiac function has been restored by surgery. This is most obvious in the sexual area and explains the occurrence of erectile dysfunction and loss of desire in these patients.14
Counselling, in the form of information and advice given before surgery, emotional support, and the opportunity to discuss problems that are anticipated, reduces the prevalence of psychological problems after mastectomy15,16 and cardiac surgery.17
If an operation is planned the patient will need to be prepared for both the operation and its short term and long term consequences. Those about to undergo an amputation should be warned that a phantom limb, which may be painful, might persist for a while, and they should be invited to share any doubts or fears they have. This enables the carer to reassure them when fears are needless and to support them in grieving for the losses that are inevitable. It also increases the probability that the patient will agree to undergo the surgery. Such support has been shown to increase the probability that the patient will cope effectively with the loss.18
Despite the prevalence of sexual and other problems, they are detected and treated in only a small minority of patients. In one study of women undergoing mastectomy, not one had been asked a direct question about how she felt about the impact of surgery.19
Any person who has undergone surgery or other treatment that has led to the loss of a body part or function should be asked how they feel about the loss ("How have you felt about losing your breast?"). Patients should be asked about the effects on mood, day to day life, relationships, and sexuality ("Can you look at the scar?"; "Is it having any effect on your physical relationship?"). If there is evidence of mood disturbance it is important to establish whether this amounts to an affective disorder.
It is also important to discover how well the family is coping ("How does your partner feel about the effects of your operation?"; "Can you talk to your family about their feelings?"). A man who has lost a testis or a woman who has lost a breast needs to know that their partner still finds them attractive. When surgery is carried out in childhood it is particularly important to involve parents in the support system since overprotective behaviour can undermine rehabilitation.
Despite some research which throws doubt on the lasting benefits of routine use of professional counsellors for stoma patients,20 the kind of emotional support and information that can be given by a doctor or nurse is undoubtedly valuable to patients about to undergo major surgery. Other members of the patient's family, particularly spouses, will also need support.
"Avoiders" may need opportunities to talk through the implications of their loss and reassurance of the normality of grief and of its physical and emotional consequences. "Sensitisers" are more likely to benefit from meeting other patients who have undergone similar surgery and can help to reassure them that it is possible to live with disabilities.
Anything that increases mobility and enhances the patient's confidence and self esteem will facilitate the necessary physical and psychological transitions.21 Well conducted postoperative exercise programmes will restore patients' confidence in their bodies; this is particularly important after cardiac surgery when spouses, and even doctors and nurses, commonly aggravate patients' fears by treating them as if they were extremely fragile.22 Organisations such as Cancer Link and Ostomy Clubs (for people with stomas) give neophytes opportunities to learn from veterans how to live with their disabilities.
People with damaged bodies may have longed for the day when they will again feel strong and safe. They approach surgery with a mixture of hope and dread. All too often their fear creates the very situation they dread. The physical manifestations of fear (which include the effects of both hyperventilation and autonomic disturbance) are easily misinterpreted as symptoms of bodily damage. It is important for medical attendants to provide positive reassurance and explanation for all such symptoms and to avoid unnecessary investigations (which only serve to convince patients that their doctors are as worried as they are). Anxiety management includes techniques for muscular relaxation and imaging (envisaging relaxing scenes and situations). Anxious patients may also benefit from anxiolytic drugs at times of particular stress.
The fact that someone who is clinically depressed has lost a limb or a breast does not mean that they will not respond to antidepressant medication, and there is no evidence that these drugs interfere with the process of grieving. When there are clinical indications for their use they should be given in full dosage and for at least four months.
Clinical psychologists have much to offer. Cognitive behaviour therapies challenge patients' misperceptions of themselves and can be helpful when body image problems persist. They are of particular value for disturbance of mood and sexuality associated with problems of body image.23 Surgical correction of disfigurement can also have a positive influence on body image, and operations such as breast reconstruction and the re-siting or modification of stomas can have profound benefits. Patients should have realistic expectations and be properly prepared.
Although many sexual problems respond to appropriate education, reassurance, and support, those that do not may be helped by conjoint sexual therapy for both patient and partner. Sometimes a recent loss may uncover sexual and other problems that go back a long way. In all of these situations the general practitioner, who is likely to be the only person in a position to give long term support, is a key figure.
Funding: No additional funding.
Conflict of interest: None.
CRC Psychological Medicine Group, Christie Hospital, Manchester M20 9BX, Peter Maguire, director
St Christopher's Hospice, Sydenham, London SE26 6DZ, Colin Murray Parkes, consultant psychiatrist
Correspondence to: Dr Maguire
Series editors: Colin Murray Parkes and Andrew Markus
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