INTERPERSONAL ASPECTS IN THE CARE OF T E R M I N A L L Y ILL PATIENTS Barry G. Wood Terminal illness usually refers to an illness where the point of death is imminent. To many, the word terminal means "there is no hope" or "nothing can or should be done." Yet, in reality, those who work with patients who have terminal illnesses continually find that the period of a person's time for dying is filled with creative possibilities. However, a conceptual framework, a mythology, might serve to transform the anxiety of death creatively. Research done by Kubler-Ross 1 and Nighswonger= has helped to provide that framework. They describe a series of "stages" (Kubler-Ross) or "dramas" (Nighswonger) by which we are able to have some understanding of the process of dying. These stages provide a needed, simple, useful outline of the normal moves made by people who are dying and are similar in their usefulness to Freud's stages of infantile development; their main interest is focused upon the interior (intrapsychic) moves that occur within the person undergoing the anxiety of the process of dying. What follows is the addition of an interpersonal dimension to our understanding of the process of dying. Any definition of terminal illness will tend to make terminal illness a static condition, astate determined by the moment of death. Such a definition will encourage us to ignore the process of dying and, more important, to ignore the life which precedes the moment of death. I propose an understanding of terminal illness that does not imply a single point in time, but rather a period of time between two points. The word terminal may represent either the beginning or ending of a journey. The period of terminal illness begins when a person's physical condition can be expected to result in death within a predictable range of time. This range of time may be known either to the patient or therapist or to both, or it may not be known to either. The end point, obviously, is the moment of death. We might describe the time of a terminal illness as that time in which one is aware that a person who is n o w alive is soon going to die. This sentence may appear naive, but by it I am attempting to describe an essential tension which must be preserved if a terminally ill person is to receive optimal care. We must remain able to be aware of two realities: the person is alive; the person is soon going to die. We must not fail into the error of believing either that the patient is not going to die or that he is already dead. When caring for terminally ill people, therapeutic value diminishes in direct proportion to the extent of the denial of either side of this essential creative tension.There are

The Rev. Barry G. Wood, M.D., Medical Director, Union Theological Seminary; Resident in Psychiatry, Roosevelt Hospital; Candidate, American Institute for Psychoanalysis of the Karen Homey Institute and Center.



the problems of the therapist. ("Therapist" in this context may refer to a physician, clergyman, nurse, family member, social worker, or friend, as defined by the actual situation.) The therapist must be able to acknowledge both the reality of his own resources, professionally and personally, as well as the reality of his own helplessness to prevent death. This is true also for the person who is dying, he too has the problem of maintaining in creative tension the facts that he is alive and that he will soon die. If both the patient and those caring for him accept the same single side of this creative tension, there will be little overt conflict, but there probably will be inadequate or inappropriate therapy in the course of a patient's terminal illness. If the therapist and patient ally themselves with opposite sides of this essential tension, there will be a marked overt conflict in the management of patient care, and therapeutically the situation may be as ineffective as that just mentioned. It is the thesis of this paper that appropriate and creative care of terminally ill patients can occur only when the tension between the facts of "alive now/will die" is maintained within the patient and when those who wish to help the person who is dying accompany that person through the stages of terminal illness. What follows is a case history which started from a situation of near chaos, but in which this creative tension was discovered and restored. An attempt will be made to separate interpretations of the events from the events of the actual clinical situation, though these frequently interact and cannot be totally separated. Mr. K was seventy-two years old, Irish born, and was admitted to the ward service with a chief complaint of abdominal swelling of three days' duration. The patient said that he had been well all of his life until three days prior to admission,when, after a meal, his abdomen had painlessly begun to triple in size. Mr. K was a gregarious, feisty Irishman who would have fit perfectly into a pub scene in a movie about early twentieth-century Ireland. He seemed to have ruined this image of himself for the house staff by loudly and vehemently denying that he had consumed "a single drop of alcohol" for more than fifty years. His own self-image, that of being the kind of person who could control every aspect of his life, was shattered when he was unable to deny the physical changes that were occurring. The shock of recognition of his denial was tempered by his perception that his present condition had occurred suddenly and was related to a particularly heavy meal he had eaten. The patient underwent an extensive work-up for "ascites of unknown etiology" and, two weeks later, after a second peritoneal biopsy, a diagnosisof mesothelioma was made. During his work-up, the patient became increasingly irritable at "the inability of the doctors to find out what was the matter with me." The house staff described the patient as "a sullen and cranky old man" who was annoyed with everything that was being done for him. After the positive pathology report returned, the patient was told that he had a tumor in his abdomen and that it would be necessary to inject a radioactive substance into his abdomen to decrease the swelling and give him some comfort. When the patient asked about the expected



results of this therapy, the house mother was evasive. Since this was the first time that the house officer had utilized this mode of therapy, he was not sure of what he could tell the patient. The patient consented to the treatment, but then became even more upset over the fact that, although there was slight improvement, he certainly was not cured. T h e staff, e x p e c t i n g the p a t i e n t to be as relieved as t h e y when a diagnosis was f i n a l l y made, were surpr4sed to find Mr. K angrier than ever. T h e i r f e e l i n g o f helplessness was t r a n s m i t t e d to and shared b y o t h e r members o f the staff.

I was called to see the patient by his house officer, who knew I was interested in terminally ill patients. This house officer suggested I wear my clerical collar when I saw the patient, saying, "Mr. K.hates doctors right now." This feeling was confirmed by the nursing staff. Mr. K's house officer said he felt paralyzed by the patient's anger and denial of his terminal illness. When I went to see the patient, I wore my clerical collar as well as a white attendingphysician's coat. When I asked the patient what he believed was the matter with him, he

initially spoke of how the house staff had "made him" have his ascites by"iniecting some stuff" into his "stomach." They don't even know what the stuff does," he said. After a pause and a fierce frown, he suddenly changed his facial expression from anger to extreme sadness: "Fro full of tumor and those doctors don't know anything about it. My liver and my kidneys are absolutely perfect. They are avoiding me because they don't know anything about it." Then he added sarcastically, "Sure~v, there must be someone in this great city of New York who they might bring to see me and who might know something about my condition and who could help me."

Both house staff and patient had been trapped by their own pride systems. The house staff, temporarily taken out of conflict by their discovery o f the cause of Mr. K's problem, felt elated. T h e y felt insulted and injured when Mr. K did not share in their elation. T h e y had been forced to ignore the facts of Mr. K's present existence because their field o f vision was almost totally filled with the inevitability of his approaching death. Though compelled to " d o s o m e t h i n g , " their ambivalance was expressed in the fact that, though a form o f palliative t r e a t m e n t was chosen, it seemed unnecessary to learn its i m m e d i a t e value to those receiving it. Mr. K., however, felt o v e r w h e l m e d by his inability to control the situation and was infuriated when his passive acceptance of a palliative t r e a t m e n t did not " m a k e it all b e t t e r . " He was unable to voice his doubts that his own resources would not be sufficient to retain his aliveness. The house staff, o v e r w h e l m e d by their vision of his coming death, could not even allow the possibility of this aliveness to enter their consciousness. A vicious cycle had been activated. The patient used the tension created by his own ambivalance and the ambivalance of the house staff as an e x t r e m e l y effective way o f expressing his anger a b o u t having a terminal illness. The house staff and ward staff generally responded by withdrawing from the patient and his present situation. This only served to give the patient a reality base for his anger and to give the house staff a genuine reason for feeling guilty. After several interviews, Mr. K discovered that I neither felt guilty about his state nor was 1 put off by his anger. Mr. K then said that he felt that he was "nothing but a tumor." He looked sad,then laughed sardonically and said, "Those people don't know how to talk to me. But then, how do you talk to a tumor.)" Although the patient was in continual pain, the house staff told me that he refused all pain



medication. They seemed quite baffled. At the end of one interview, however, the patient revealed the source of the difficulty. He told me that he knew that if he took his pain medicine (by mouth) that it would do him no good, as it would go into his "stomach" (ascites). He said that an injection would probably help him and that he would accept that. When this route was suggested to the house staff, they were relieved, but said,"We decided not to give him the intramuscular pain medication because we were afraid we would cause him still more pain." The patient responded well to small doses of codeine, and seemed much happier for the first time since I had first visited him. During the next interview,he told me, "You don't know how much effort it takes to stay sane when you are in pain. I was afriad to talk to anyone because I felt that they would see I was going crazy." Neither t h e h o u s e s t a f f n o r t h e p a t i e n t had t h o u g h t o f telling t h e o t h e r t h e i r reasons for preferring t h e oral or parenteral r o u t e for pain m e d i c a t i o n . T h e clearing o f this b l o c k in c o m m u n i c a t i o n was a key to t h e r e s o l u t i o n o f t h e i r conflict. T h r o u g h discussion o f this incident, b o t h the p a t i e n t a n d t h e h o u s e s t a f f came to realize t h a t o p t i m a l care could o n l y o c c u r w h e n r e s p o n s i b i l i t y for t h e p a t i e n t ' s care was shared by t h e p a t i e n t and t h o s e on the health t e a m . T h e a c k n o w l e d g m e n t of the m i s u n d e r s t a n d i n g and realization o f its effects u p o n all involved in Mr. K's t e r m i n a l illness m a r k e d t h e beginning o f a very close r e l a t i o n s h i p b e t w e e n t h e p a t i e n t and t h e h o u s e and ward staffs. T h e effects of t h e presence o f c h r o n i c pain u p o n t h e patie'nt and h o u s e s t a f f should n o t be m i n i m i z e d . Mr. K's pain had also a d d e d to his inability to discover his o w n resources in a t i m e of a c u t e t e n s i o n . Having less pain, Mr. K was able to r e d i r e c t his resources and t h u s begin t o allow h i m s e l f to stay w i t h t h e life/death conflict. T h e h o u s e s t a f f also began to see how, w h e n allied to t h e p a t i e n t , t h e y t o o could discover his

present possibilities and aliveness. The patient joined a newly formed ward group which met three times a week. These meetings were designed to help patients and staff recognize that patients need not be the passive recipients of "care" but should and could participate in the therapeutic process of the ward community. Initially, Mr. K remained angry, although it seemed to be more out of habit than feeling. He then began to express feelings of uselessness as well as anger: "The only use I shall be is when the doctors wheel me out of here in a'box and they have an empty bed." This episode is r e p r e s e n t a t i v e of a s h o r t t r a n s i t i o n a l period, d u r i n g w h i c h the p a t i e n t tested t h e c h a n g e in feelings and a c t i o n s o f t h e h o u s e and ward staffs. He seemed to d e t e c t a change in r e l a t i o n s h i p b e t w e e n himself and t h e s t a f f b u t d i d n ' t a p p e a r to k n o w w h a t to do in response. At first, the patient was afraid to express his opinion in the group sessions, but it only took a small amount of reassurance to overcome his fears. My interviews with him began to focus on the fact that, although he had a terminal illness, he wasn't dead yet. During this time the patient made a simple but extremely important request -- he wanted to read the New Yor/~ Doily News each day. I said this could be arranged, and either a member of the ward staff or I would bring him the paper first thing in the morning. He was delighted. The staff also was delighted because they bad found something that they could do that was meaningful, was requested by the patient, and was something in which they could all participate. T h e ward staff began t o s c h e d u l e regular c o n f e r e n c e s o n h o w t h e y could increase t h e i r sensitivity to Mr. K's needs and r e s p o n d to t h e m a p p r o p r i a t e l y . O n e decision was



that a staff member would be scheduled to spend some time with Mr. K each day and that that person would not be interrupted by other duties while with Mr. K. One day Mr. K said to me, "l really know that people around here care about me, and I know this because I have found that no matter how I feel or what I say they don't go away." Mr. K began to thrive on the group sessions (which he called "gripe sessions"). During these meetings, he was extremely perceptive and his comments often provided insight into the problems on the ward. He was able to accept criticism and anger from other patients. He told them he could do this because, "If I've been able to live with this thing growing inside of me, I can live with your anger." Mr. K gradually developed more signs and symptoms of his approaching death. Blockageof lymphatic drainage from his legs by metastases caused severe and constant edema as well as cellulltis of his legs. These problems severely limited his mobility. The staff responded to these clinical changes by moving the patient to a room nearer to the constant stream of traffic of the ward, so that he would not become isolated - an idea the patient joyfully accepted. Staff members read to him. He would cling to a staff member and say that he was frightened. Their response was to allow the physical and emotional clinging and stay with him until he was less frightened. He received great comfort from frequent visits by his local priest and received Communion daily. He became aware of changes in his thinking and in his eyesight but seemed able to work out ways of coping with his increasing handicaps. The situation described above took place when Mr. K's death was imminent. It was a period marked by increased concern and overt mourning for Mr. K by the staff and by Mr. K himself. Mourning was experienced privately but was also shared freely. Within about a week, this period of mourning seemed over, and Mr. K died suddenly from a pulmonary embolus. The entire ward staff was surprised that they did not feel an unpleasant sadness when Mr. K died but rather described it as a "filled sadness." They had experienced their grief and had learned to live in the tension created by the facts that Mr. K was going to die and that he was very much alive. Both the staff and Mr. K had reached the acceptance phase of his journey toward death. There were no obvious signs of this, but the mood of the ward and the patient's mood in the days immediately preceding his death was one of calm acceptance, even satisfaction. Both staff and patient had [earned~to live with the reality of Mr. K's death with minimal anxiety. The day before he died, Mr. K asked the staff to hang a crucifix on the wall by his bed and said that he couldn't think well or see very well but that he could at least see the outlines of the crucifix. The action of asking for the crucifix and the staff's obtaining one for him became the sign of their mutual overt acceptance of his death and the acknowledgment that, although death was imminent, his worth and being were not threatened. This case history illustrates many of the problems of the care of dying patients. One significant factor seemed to be absent: the family of the patient was not present. However the same principles described above would have applied if they had been. In Mr. K's case the ward staff became Mr. K's family. The most important requirement for appropriate management of any patient is that the patient and those caring for him speak to each other and hear each other. This is especially difficult when caring for a dying patient. Maintaining a constructive tension between the facts of "alive now/will die soon" can be of some use when we are caned upon to clarify and interpret the problems that frequently occur in the care of those



who are dying. However, no formulation of the possibilities of creative interpersonal relationships will ever be of use unless those relationships [email protected] take place. It is the quality of the relationship, not the quantity of time spent with the patient, that is important. However, the quantity of time spent should be relatively constant, whatever the duration chosen. (My interviews with Mr. K were never longer than fifteen minutes and averaged ten minutes.) Hospital life is lonely and structured. It is crucial, therefore, that patients be seen regularly, frequently, and at the same time each day. It is important to call the floor if we will be delayed or if we cannot see the patient that day. If we break this structure without telling the patient, it always mobilizes the patient's negative feelings about himself, as well as anger toward the therapist. Then we may also feel guilty. This is the perfect set-up for a cycle of guilt and withdrawal which can threaten the therapeutic relationship. Communication with all the staff caring for the patient is extremely important. In the preceding study, the staff held weekly half-hour meetings with the consulting therapist. During these meetings, they discussed the course of the patient's illness, reactions of the staff to the patient and vice versa, and formulated therapeutic plans. We discovered that certain members of the staff had difficulty working with dying patients while others seemed to have little or no difficulty. As a result, Mr. K was assigned ward-staff members who had less difficulty preserving a constructive aliveness/ dying tension and could therefore respond to him openly and easily. The nurses kept careful notes in the chart about Mr. K's problems, strengths, and moods. The house staff read these daily and tried to make their notes legible and useful to the nursing staff. The social worker assigned to the ward was very involved with the patient. She was able to spend more time with him than many of the members of the floor staff and became especially valuable in times of crisis. Her observations and suggestions were written daily and read by all caring for Mr. K. Above all, the staff learned to spend time listening to the patient. They decided to set aside time when they could simply sit "and listen. This was important to the ward staff, as well as to the patient, for the staff felt comforted in knowing they could devote full attention to the patient during that time. Once again, the time allotted was brief, only ten to fifteen minutes a day, but it was quite sufficient. Physicians and clergymen have a tendency to assume that they are the only persons who can be responsible for the care of a terminally ill patient. They make this assumption even if they are either uneducated in the care of terminally ill patients or are psychologically unable to establish or tolerate the proper alive/dying relationship with their patients. When those responsible for the care of Mr. K became aware of their difficulties in relating to him, they called in someone who they knew was able to work with terminal patients and who was familiar with current problems and techniques of ,terminal care. There will be difficulty in asking for help as long as therapists believe that they are not being "real" physicians, clergymen, nurses, social workers, or family members unless they are totally able to respond in all phases of the care of terminally ill patients.



Optimal care of the patient with terminal illness can be achieved when we can sustain the constructive tension between the facts that the patient is alive and that he is going to die. When we learn to live, work, and learn in this situation of creative tension, we can develop a useful plan for the care of the individual living between the knowledge of the certainty of the approach of death and the moment of death itself.

REFERENCES 1. Kubler-Ross, E. On Deuth und Dying. London: Collier-MacMillan, 1970. 2. Nighswonger, C. A. "Ministry to the Dying as a Learning Experience." Paper presented at the 1970 AAPC/ACPE Professional Session, Boston, Mass., November 14, I970.

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Interpersonal aspects in the care of terminally ill patients.

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