The Crisis of Treatment: Survival by Machine

Transcription

1 VIII The Crisis of Treatment: Survival by Machine In the last two or three decades medical progress has involved more and more reliance on technology and machinery. As with the complex specialized hospital environments discussed in part VII, this progress has created new psychological stresses for patients and their families. In an intensive care unit, for example, a patient must live with an array of machines and accept the fact that his life may depend on them, but he also knows his stay in the leu will be of short duration. In this section we focus on those who must accept the use of an artificial organ or mechanical device in order to survive, on their adaptation to the loss of a normal bodily function, and on their permanent dependence on a machine as a substitute. With the pace of developments in biomedical engineering and in human transplant methodology (see part IX) the concept of replacing worn-out or diseased human organs is an everyday reality. The emotional, psychological, and social effects of these procedures must be fully understood if patients are to benefit maximally from their use. One of the earlier developments, and one which immediately created psychological problems, was the colostomy, the creation of an artificial opening in the abdominal wall for the discharge of intestinal material after cancer or ulcerative colitis has necessitated the surgical removal of some or all of the colon or rectum. Given the distaste with 281

2 282 PART VIII which bodily waste products are viewed in our culture and the emphasis on personal hygiene, the loss of bowel control and the possibility of escaping gas, unpleasant odors, or occasional leakage present serious threats to the colostomy (or, similarly, the ileostomy) patient. In addition to anxiety about social embarrassment and even rejection, the patient must deal with a sense of mutilation and an altered and impaired body image. Druss and his colleagues3 describe several approaches which patients may take in handling these issues. Some develop obsessive rituals of colostomy care to bolster their sense of control. Other strategies include restriction of activities, reluctance to leave the home, and avoidance of interaction with other people; these help control anxiety but are usually less satisfactory in terms of overall adjustment. A patient's insistence on self-sufficiency in colostomy care is a more positive way in which he can avoid the risk of rejection. Members of local colostomy or ileostomy mutual aid clubs can be a valuable source of encouragement and of practical information, and can also serve as models of successful adjustment with whom patients can identify.3 In the years since the first cardiac pacemakers were implanted in 1957 the procedure has become almost routine for medical staff, but for patients it still has a dramatic psychological as well as physiological effect. Unlike the colostomy, the pacemaker actually controls the deficient organ rather than being under the patient's control. Blacher and Basch 1 describe three stages in the adaptation of people to pacemaker implantation. In the preoperative and immediate postoperative period the patient's main concern is death due to the cardiac surgery and fear about having his life depend on a fallible machine. Learning more about how the pacemaker works and denying the risks of serious mishaps are the common ways in which patients handle this initial anxiety. During their convalescence when they are no longer in acute danger of dying, patients tend to become more aware of the pacemaker itself: its effect on physical appearance and its implications for an altered body image. Over the long term most patients resume their activities, master their fears, and integrate the pacemaker into an acceptable self-image. Our first article is an example of just such a successful adaptive process. Clarissa Williams, a nurse in a coronary care unit, briefly recounts her own experience with a pacemaker and her work with other pacemaker patients. Initially she resisted the idea of a pacemaker implant. She was disturbed by the thought of a mechanical device con-

3 THE CRISIS OF TREATMENT: SURVIVAL BY MACHINE 283 trolling her heart, especially a device which her own experience as a CCU nurse had shown her was not fail-proof. Although she resumed her usual activities she did not feel she had really accepted the pacemaker; she decided to meet her problem head on by specializing in helping pacemaker patients. To facilitate effective coping she allows patients to ventilate their feelings and fears, she gives them information about how the pacemaker works and about what to expect physically and emotionally, she shares her own experiences with them, and she encourages them to identify with her as an example of the return to full productivity which awaits them. In the early 1960s the introduction of a permanent arteriovenous shunt made regular hemodialysis possible for patients with chronic renal failure. Unlike a colostomy, which requires a few extra hours for care and maintenance, or a pacemaker, which can almost be ignored between battery changes, chronic hemodialysis necessitates significant changes in life-style and involves major psychological conflicts for many people. The stresses which accompany this life-saving procedure are so numerous that they tax people's coping abilities to the utmost, causing some patients to ask if such a life is worth living. The problems associated with -chronic hemodialysis are of several types. There are practical matters like the financial strain caused by medical bills and reduced income, or the need to change residence to be near a dialysis center. Specific aspects of the treatment often prove troublesome, such as the strict dietary and fluid restrictions or the length of time (20-30 hours a week) needed for dialysis, time which often must be taken away from work or from family activities. The care of the arteriovenous shunt itself is another source of concern for patients because of the ever-present threat of injury or infection and because of its cosmetic effect. In addition, many patients continue to experience a sense of physical deterioration and feel unwell at least some of the time. In the second article Harry Abram discusses the problems patients have preserving a satisfactory self-image and maintaining interpersonal relationships. These difficulties are generally related to the issue of dependence. Since dialysis is usually prescribed only as a last resort for people with permanent (and terminal) renal failure, most patients have experienced a period of severe, debilitating illness and have had to accept the status of a dependent invalid. Once they are selected for dialysis, patients are expected to resume independence and self 'sufficiency outside the treatment settings, and to accept their total

4 284 PART VIII dependence on a life-giving machine and the staff who run it, a difficult balance for most people to find. Acknowledgement that their bodies can no longer function normally and must have mechanical assistance to survive requires major adjustment in patients' self-image and can diminish their self-esteem. Abram examines the widespread use of denial to cope with these troublesome issues and the incidence of active and passive suicide among hemodialysis patients. People respond to problems in a variety of ways, and a broad range of coping mechanisms in addition to denial have been observed among hemodialysis patients. Seeking emotional support from family members or medical staff and turning to religion 6 are two sources of help for patients. Patients and their families who feel hostile toward each other or toward the medical staff often displace these angry feelings onto less guilt-producing or less threatening targets. Similarly, concern about his overall medical condition (over which the patient has little control) is often displaced onto the shunt, which the patient then guards vigilantly.4 Finally, a number of patients deal with the dependent situation imposed upon them with regressive behavior, giving up some of their adult status and responsibilities (for more on regression and the artificial kidney as a maternal symbol see Viederman 6 ). In the third article Franz Reichsman and Norman Levy describe the stages dialysis patients go through in the course of successful adaptation. In contrast to their initial feelings of depression and resignation about their terminal uremia, the "honeymoon" period, when the dialysis first takes effect and physical improvement becomes noticeable, is a time of euphoria as patients feel reborn and hope for a better future returns. The next stage is often a time of disenchantment and discouragement as patients come to realize that some of their expectations (for example, for a return to their preillness level of well-being or the resumption of a full work schedule) are unrealistic. In the last stage, that of long-term adaptation, patients gradually learn to accept their limitations and the unavoidable fluctuations in their sense of well-being. An important component of this adaptation is settling into a satisfactory work pattern. The medical staff can help by advising on realistic work goals for patients, by giving the support and encouragement needed to achieve them, and by making clear that their approval and assistance are not contingent on a return to full productivity. Home dialysis has eased some of the problems of hospital or renal center treatment, but it raises some new problems for patients and their

5 THE CRISIS OF TREATMENT: SURVIVAL BY MACHINE 285 helpers. Home dialysis gives the patient a greater sense of competence and control, but it puts a tremendous responsibility on the shoulders of the helper (usually the spouse), who must help hook the patient up to the machine and stand by in case of accidents or emergencies. (See Shambaugh & Kanter 5 for other problems which spouses of dialysis patients experience.) Also, at least in the initial transition period, patients are often bothered by feelings of anxiety and inadequacy. Since home dialysis patients do not receive close or constant supervision by trained medical personnel, careful consideration must be given to the psychological adjustment of the patient and helper, as well as to their practical ability to run the machine (see Brown et al. 2). References 1. Blacher, R. S., & Basch, S. H. Psychological aspects of pacemaker implantation. Archives of General Psychiatry. 1970, 22, Brown, T. M., Feins, A., Parke, R. C., & Paulus, D. A. Living with long-term home dialysis. Annals of Internal Medicine, 1974,81, Druss, R. G., O'Connor, J. F., & Stern, L. O. Psychologic response to colectomy: II. Adjustment to a permanent colostomy. Archives of General Psychiatry, 1969, 20, Kaplan de-nour, A., Shaltiel, J., & Czaczkes, J. W. Emotional reactions of patients on chronic hemodialysis. Psychosomatic Medicine, 1968,30, Shambaugh, P. W., & Kanter, S. S. Spouses under stress: Group meetings with spouses of patients on hemodialysis. American Journal of Psychiatry, 1969, 125, Viederman, M. Adaptive and maladaptive regression in hemodialysis. Psychiatry, 1974,37,68-77.