Understanding

the

Dying Process
KARL TOMM, MD
JIM WILLIAMS, MD-

GORDON MATHESON, MD

SUMMARY The study of death and dying has recently experienced an increase in both popularity and importance, as evidenced by the growing number of relevant books and articles. Advances in medical technology have given physicians the ability to postpone death temporarily, thereby prolonging the dying process. This medical achievement has resulted in obvious benefits, but it has also created a need for better understanding of and response to the dying process. Medical success in the form of 'heroic' treatment is no longer being valued above the patient's psychological needs.
Dr. Tomm is an associate professor of psychiatry at the University of Calgary. Dr. Williams is a family practice resident at McMaster University, and Dr. Matheson is a family practice resident at the University of Calgary. Address for reprints: Division of Psychiatry, University of Calgary, 2920 24th Ave. N.W., Calgary, Alta.
IN ORDER FOR a physician to function successfully when called upon to support a dying patient, he must have an awareness of the dynamics involved in the psychological aspects of death and dying. Several conceptual models of the dying process have been proposed in recent years. Kubler-Ross' has presented a model which emphasizes five emotional stages (denial, anger, bargaining, depression and acceptance) experienced by the tenninally ill patient. Weisman2 has focused his attention on the patient's cognitive states, while Glaser and Strauss3 have directed their
62

never

be relegated to a purely intellectual level, for such information exchange without empathy can be devastating. The crucial element is not what, but how, information is conveyed in the relationship. All disclosure, and particularly that involving mutual sharing, should allow adequate time for the patient to absorb it. 1

6 Open communication should

efforts towards identifying patterns of social interaction in the dying situation. These three models provide valuable insights into the nature of the dying process, but they are somewhat limited in scope and applicability. An integrated framework incorporating considerations of emotional, cognitive, and interactional patterns is necessary for a more complete understanding of this critical process. Equally important is the need for a model which applies not only to the situation of the dying individual, but also to the situations of all those called upon to deal with his

death (physicians, nurses, counselors, and family members). Management of the dying situation can be termed a success only if there is continuing healthy psychological functioning by both the patient and the surrounding participants.
Common Problem The models of Kubler-Ross and Weisman are valuable outlines of the emotional and cognitive states possible in the dying situation, but they suffer a common problem. Both models imply a linear progression of discrete stages through which a patient passes

CAN. FAM. PHYSICIAN 22:1420 NOVEMBER, 1976

as the dying process unfolds. Such a sequential view proves problematic because actual observation of dying patients indicates that patient responses are, in fact, extremely variable over time and do not follow a consistent progression. Many patients display acute depression at the onset, while others show evidence of acceptance by immediately making a will. Towards the end these same patients may display considerable denial, seemingly contradicting the progression proposed in the models. Moreover, some patients do not reveal anger, bargaining, or denying tendencies. Must we assume that these reactions are there even though we do not see them? To assume that a linear progression actually does or should occur within a patient may be misleading and can even negatively affect patient management. Some professionals have responded by attempting to 'stage' their terminally ill patients and to help them 'progress' to acceptance. The idea of consistent emotional or cognitive linearity in the dying process should be tempered by consideration of a crucial variable - the immediate context of interpersonal relationships surrounding the patient.. Glaser and Strauss's study of patterns of social interaction in the dying situation is helpful in assessing the importance of this variable.

A Practical Framework
Three parameters must be considered in understanding the dying process: 1. The chronological sequence of events in the dying process. 2. The nature of interpersonal relationships. 3. The reactions of the individual. Given knowledge of the first two parameters, it is possible to make general predictions about the third.

The Chronological Sequence of Events The first parameter focuses on the progression of events relevant to the patient's physical rather than psychological status. Two variables operate within this parameter: time and information about the patient's physical condition. The pace of physical deterioration can be plotted along the time axis and related to events in the other two parameters. The patient's physical status can be classified into three predeath stages, adopted from Weisman's model: 1. Primary awareness of illness.

physical condition and his feelings are 2. Established illness. discussed openly, hence the open com3. Final decline. The markers which delineate the munication is unilateral. Mutual sharing differs from open boundaries of these stages are variable in their discreteness and timing. The communication in that the personal beginning of primary awareness, for thoughts and feelings of both parties example, is at times imprecise because in the situation are made explicit. the signs or symptoms which arouse Traditional roles and barriers are suspicions of life-threatening illness dropped, leaving two persons to face may be vague or intermittent, but one another as equals sharing a very there may also be a clearly identifiable meaningful experience. Mutually dispoint in time which marks the onset of closing relationships are somewhat rare awareness. Similarly, the diagnosis and between physician and patient, but are confirmation of the illness as life- common between family members threatening may occur at an identifi- during the dying process. The terminable point or may evolve gradually. On ally ill patient is particularly receptive the whole, however, physical deteri- to such integrative experiences during oration is ultimately progressive and the stage of established illness, and linear, despite intermittent fluctua- they can provide him with an incredtions, and the order in which events ible amount of emotional strength for occur is the same for most patients. making a successful adaptation to his situation. Interpersonal Relationships Physicians, like everyone else, vary The second parameter of the assess- tremendously in their capacity to ment framework, the interpersonal re- share information and feelings in their lationship context, is particularly con- relationships with others. Generally cerned with how information is hand- speaking, there is a positive correlation led during the sequence of events. between the physician's emotional There are two basic variables within responsiveness and the amount of inthe second parameter: the amount of formation he exchanges. That is, the information exchanged and the emo- more sensitive the physician, the more tional responsiveness of the individuals he is likely to share. Doctors who are involved. The model of interpersonal prone to withdraw from emotional relationships presented here is des- turmoil or who regard death as a cribed primarily in terms of the physi- medical failure may have a problem cian who is called upon to treat a overcoming their own avoidance tenterminally ill patient, since the dis- dencies enough to empathize with, or closure of information is often re- even recognize, the psychological garded as his responsibility. However, needs of the patient. In an unconsciit is equally applicable to interactions ous attempt to avoid having to cope between the patient and his family or with the emotional turmoil that would between a family member and a nurse, be stirred up, they may avoid sharing information and use the rationalizaetc. Four types of relationship, based tion that they lack the time and/or on a continuum of increasing com- sufficient certainty of a diagnosis. municative exchange, can be differen- Others may incorrectly assume that tiated: no disclosure, partial disclos- their patients do not want to know the ure, unilateral open communication, truth about their conditions. Most and mutual sharing of both informa- patients do wish to be informed, tion and affect. The first type of although they may be concerned relationship (no disclosure) is found in about their capacity to deal with the the situation where the physician has truth. When the patient is provided not informed the patient of the nature with an opportunity to work through and severity of his illness. Such situa- his fears of emotional turmoil and tions still do occur, especially when instability, he usually becomes quite the patient is quite young or very old. receptive to full communication. Partial disclosure is perhaps the The overall direction of good manmost common type of doctor-patient agement is that in which there is relationship. Here, the physician may development of the potential for full reveal the technical diagnosis, but does sharing in all interactions among not elaborate on the prognosis. In participants in the dying process. cases of open communication, the Affective support of the patient is physician includes an explanation of important, for he has a great need to the extent of the illness and its ex- integrate his thoughts and experiences. pected complications. The patient's interactions which feature mutual
63

CAN. FAM. PHYSICIAN 22:1421 NOVEMBER, 1976

sharing should be encouraged, particularly between the patient and his family. Those patients who have no opportunity to share with family members or close friends should be provided with some other resource to aid them in integration. While it is often not possible or appropriate for the doctor/patient relationship to be one of mutual sharing, open communication on an affective level should be maintained in the physician's dealings with the terminally ill patient. Relationships based on mutual sharing or on unilateral open communication require a great deal of time and a significant amount of emotional energy in order to be successfully maintained. It is not surprising that openness in the doctor/patient relationship is often allowed to lapse as the illness progresses and the discussion of new information is overlooked. Such lapsing is generally unfortunate, although it may be appropriate when the patient's mental status becomes impaired. Open communication should never be relegated to a purely intellectual level, for such information exchange without empathy can be devastating. The crucial element is not what, but how, information is conveyed in the relationship. All disclosure, and particularly that involving mutual sharing, should allow adequate time for the patient to absorb it. Waiting until the final decline is leaving it too late.

Individual Reactions When both the patient's location within the chronology of the dying process and the nature of his interpersonal relationships are understood, it is possible to anticipate some of the reactions he may experience. (Again, it should be remembered that although the framework is described in terms of patient reactions, it nonetheless is meant to represent the reactions of any individual forced to come to terms with the situation of an impending death.) An assessment of the patient's overall psychological state should involve consideration of his thoughts, feelings, and behavior. However, because assessment of both cognition and affect requires a high degree of inference, the following classification of reactive states is based primarily on observable behavior. The behavior of the dying patient at any one time may reflect one of three reactive states: avoidance, emotional turmoil, and adaptive activity.
64

These three behavior states can be seen as alternatives along a dynamic continuum between the two opposite poles of avoidance or approach. The situation being avoided or approached is any particular threatening event occurring in the first parameter -the chronological sequence of events. The state of emotional turmoil is seen as intermediate and transitional, mediating the movement from one extreme orientation to the other. Ideally, movement from one type of behavior state to another should be free and flexible so that the individual can respond appropriately in whatever specific situations he may find himself. Optimal management would facilitate such ease of movement for the patient or other involved individuals. An understanding of the three general reactive states and some of their implications should aid in management. Avoidance is a general term used to encompass those observable behaviors which represent attempts to evade threatening issues. All terminally ill patients behave in this manner at times to minimize the immediate painful realization of impending losses and/or death. This avoidance helps protect the patient from the intense and at times disorganizing emotion which is generated by the meaning they attach to particular events. Denial is a common example of avoidance behavior, but other more sophisticated psychological defense mechanisms, such as suppression or intellectualization, are often used to keep overwhelming affect within bearable limits. Apart from allowing the control of emotions, avoidance is in fact the most appropriate reactive state for those involved in the dying situation to be in most of the time. Avoidance allows the patient, for example, to continue his customary activities and to enjoy the time that he has left without always carrying the mental burden of full awareness of impending death. However, when avoidance is exclusive or overly persistent, it usually becomes inappropriate and problematic. Such inappropriate avoidance minimizes important communication among those involved and may even inhibit the patient from taking appropriate action, such as seeking possible treatment or settling personal affairs. The physician should intervene if there is too much avoidance, taking into account the fact that difficulty in tolerating the intermediate reactive state, emotional turmoil, is usually

what is blocking the free movement to adaptive activity. Extended information exchange and mutual sharing sessions can aid in ameliorating the block. Emotional turmoil, the second general reactive state, is generally triggered in response to information about the deteriorating condition or its implications. Many types of emotion may be experienced and/or expressed by the patient, and they do not necessarily follow the sequential pattern described by Kubler-Ross. During the course of dying, the patient may manifest any or all such emotions as fear, anxiety, anger, sadness, shame, and guilt. The type of emotion experienced depends on the meaning the individual attributes to specific events or to the information shared. This meaning-attribution in turn depends on his particular past experiences, knowledge and beliefs, which are highly personal and idiosyncratic. Similarly, the mode of expressing emotion is largely dependent on longestablished individual response patterns. Some patients tend to internalize their feelings, while others are very demonstrative and demanding. The importance of the second parameter, the immediate interpersonal context, in mediating the patient's emotional response cannot be overemphasized. If his fears and anxieties can be recognized and discussed, they can often be alleviated. In one case, for example, a patient, having reflected on the new information that his malignancy had spread to his liver, became preoccupied with the fear that he would lose control of his mind. Unknowingly, he had associated the bizarre violent outburst of an uncle who had died with brain metastases with his own illness. Once the nature and source of the patient's emotional response had been explored, it was possible to relieve his anxiety through further information sharing to the effect that there was no evidence of brain metastases in his case. Quite apart from the profound fear of loss, a great deal of emotional turmoil is also triggered by the disruption of simple customary activities. Admission to hospital interrupts a large number of personal patterns and forces the patient to fall in with unfamiliar schedules and routines. Additional changes in lifestyle required of the patient by his illness may have even more of an emotional impact than hospitalization or thoughts

CAN. FAM. PHYSICIAN 22:1422 NOVEMBER, 1976

of death. A woman who was no longer able to cook, for example, found herself struggling with emotional turmoil each mealtime. This patient found her sense of displacement from her usual role difficult to cope with. Similarly, the patient who is no longer able to carry out his own toilet routines may respond to the change with a great deal of shame and guilt. If the patient has adequate personal resources and receives emotional support from those around him, he is more likely to work through his turmoil in a manner which allows for a realistic adjustment to his situation. The presence of a sensitive listener with whom the individual may discuss his thoughts is extremely helpful. Reflective clarification and feedback from others helps the patient deal with his feelings in order to reorient himself. A basis of trust in the relationship is necessary for the vulnerable patient to be able to disclose his underlying thoughts. As new information is integrated into the patient's view of his situation, the possibility of adaptive action develops. Adaptive activity is that behavior which is appropriate to a particular situation. Before a patient can take adaptive action, he must arrive at some acceptance of reality. Full and early information exchange between the patient and his physician will best facilitate this. Further open communication and timely emotional support can then help the terminally ill patient orient his remaining energy towards accomplishing important work, both emotional and material, in preparation for death. He may complete his will, distribute his belongings, take a long hoped-for trip, re-establish contacts with forgotten friends or relatives, and begin a process of 'life review'. Just as a patient may become trapped in the states of avoidance and emotional turmoil, so too he may overreact with excessive preparatory activity. He may, for example, stop working prematurely, precipitously cut off all social contact, or attempt suicide when he still has considerable time and personal resources left. Such circumstances again suggest that the individual has difficulty coping with emotional turmoil. At such times additional emotional support is necessary to help the patient return to avoidance patterns. Thus, mediating the transitional state of emotional turmoil is the primary goal and continued interpersonal

relationship is the primary channel of intervention in this process. The further the physician moves in the direction of open information exchange, the more likely the patient will take adaptive preparatory action. The more complete the emotional sharing, the greater will be the patient's strength to react appropriately. The skills to manage this aspect of patient care probably depend more on the physician's own flexibility and integration of emotional turmoil than on mere understanding of a framework. Summarizing this approach to management of the terminally ill patient, the first task is to determine what is known of the patient's physical condition and approximately where he fits into the overall time perspective. Secondly, identify the nature of the existing interpersonal context, particularly noting the degree and manner of information exchange between the patient and various individuals (medical staff and family members). The third step involves assessing the patient's predominant reactions and his flexibility of response. Fixation in any one of the reactive states of avoidance, emotional turmoil, or adaptive action should be identified as problematic. When reactive problems are evident, deliberate efforts to alter the interpersonal relationships of the second parameter through information exchange and emotional support will help the patient adapt. Finally, although open communication and mutual sharing between doctor and patient are ideal, it is not necessarily up to the physician to be the major resource of psychological support. Some physicians are not comfortable in such a role and/or do not have the necessary time and energy. These physicians should recognize their understandable limitations and deliberately engage other professional resources or preferably family resources to maintain interpersonal support. The goal for all those attempting constructive intervention should be successful maintenance of open, honest, and warm relationships with the patient and among themselves. (

GROUP LIFE INSURANCE

FOR MEMBERS OF THE COLLEGE OF FAMILY PHYSICIANS OF CANADA

Evidence of insurability waived under age 54 if member enrolls within 15 months of joining the College

GROUP COVERAGE FEATURES

. low group cost
* conversion privilege

* no premium charge on total disability prior to age 60

.

administered by your own association

. available to eligible members under age 70

. evidence of insurability for the basic plan is not requ i red by College members under age 54, provided they enroll within 15 months of joining the College
For further information write to:

References
1. KUBLER-ROSS, E.: On Death & Dying. New York: The Macmillan Co., 1969. 2. WEISMAN, A. D.: On Dying & Denying. New York: Behavioral Publications, Inc., 1972. 3. GLASER, B. G., STRA USS, A. L.: Awareness of Dying. Chicago, Illinois: Aldine Publishing Co., 1965.

COLLEGE OF FAMILY PHYSICIANS OF CANADA 4000 Leslie St. Willowdale, Ont. M2K 2R9
65

CAN. FAM. PHYSICIAN 22:1423 NOVEMBER, 1976