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Refusal of treatment
Commentary and Perspective From time to time, the Journal receives manuscripts which can be thought of as opinion pieces, essays, or editorial comment on matters of topical interest. Such submissions will be refereed in the usual fashion and if suitable, published in this section. The Editorial Board invites Letters to the Editor or rebutting commentary with the understanding that all submissions are subject to editing.
Refusal of Treatment Suicide or Competent Choice James R. McCartney,
M.D.
Associate Professor of Clinical Psychiatry, Cornell University Medical College, New York, New York Chief, Consultation and Liaison Psychiatry, North Shore University Hospital, Manhasset, New York
Abstract: Increasingly,
patients are exercising the right to refuse treatment. Patients who have been chronically ill or those who consider themselves terminally ill are most apt to do so. Accordingly, liaison psychiatrists are asked to determine whether refusal of treatment is an act of suicide or a competent choice. This is difficult to assess in the absence of delirium or overt psychosis. It is suggested that the dynamics and affective tones of the patients’ reaction to the health care system as well as to family andfriends are of major sign@ance in this determination. The actual process of exploring these areas with patients making this choice is often therapeutic in restoring the patients’ sense of control or authenticity. Often this process enables them to continue treatment and avoid the impulsive interpersonal anger that characterizes the suicidal act.
Modern medicine has had a technologic explosion. Our capacity to treat life-threatening illness, to sustain biologic function by physiologic or pharmacologic means is increasing. Often therapy is symptomatic rather than corrective or curative, but patients are being offered opportunities to extend 338 ISSN 0163~8343179D40338-OMW2.25
life. Their hope for cure is mirrored by our scientific zeal in pursuit of definitive answers that still evade our grasp. Our doubts as physicians that the “cure is as bad as the disease” may haunt our more pensive moments. Shaken, some physicians have moved toward therapeutic nihilism and would perhaps prematurely withhold treatment, cease treating, “pull the plug.” Others grimly endeavor to expand knowledge, regardless of the individual cost. At best, medical decisions are a resolution of the vectors of healing, helping, and hurting. The resultant decisions are ethical at their core. The scientific and ethical issues troubling medicine are increasingly debated openly in both medical and lay journals. It is not an abstract debate to thousands of patients but a deeply personal experience for them and their families. For many it is an excruciating decision whether or not to accept open heart surgery, continue dialysis, accept a kidor attempt a second course of ney transplant, chemotherapy for cancer in the face of mounting Gmml Hospital Psychiat y @ Elsevier North Holland, Inc., 1979
Refusal of Treatment
difficulties. The stress of these choices and the procedures that follow impacts upon their lives with cataclysmic force. The mechanical, biologic, psychologic, and interpersonal traumas associated with chronic illness of this proportion and seriousness extract a toll that inevitably challenges the most optimistic and relatively easily denervates the fiercest denier of reality. Although patients’ right to treatment as well as the right to refuse treatment are well established legally, the process of reaching these decisions is poorly understood and conflict ridden. The choice is complex. The medical risks in this age of informed consent are presented to people already threatened by illness. Illness threatens patients with dissolution of self-image, personal roles, and interpersonal relationships. No choice is achieved without tortuous debating of the knowns and unknowns. Yet physicians earnestly endeavoring to defeat the enemy, death, frequently rush the decision by either assuming consent or viewing hesitation as manifestation of the patient’s self-defeating depression. While there has always been a need to determine the suicidal potential in patients grappling with such choices, psychiatrists, particularly those involved in consultation and liaison work, are more frequently asked to advise the medical or surgical team whether the decision to refuse treatment is an exercise of their right, or a manifestation of suicidal intent or drive. Even doubt and hesitation to choose are viewed with suspicion. Both patient and physician may begin to doubt the motives, the knowledge, the faith of the other. At this point, the psychiatrist may be called.
The Stress of Illness and Treatment The literature is crowded with explorations of the stresses that illness and hospitalization place upon patients. The complexity of these experiences and the interpersonal and medical problems that arise are well defined. Strain and Grossman’s (1) book, Psychological Care of the Medically 111, describes the categories of stress that patients experience. Seven categories of vulnerability are delineated: 1. 2. 3. 4. 5.
The basic threat to narcissistic integrity Fear of strangers Separation anxiety Fear of the loss of love and approval Fear of the loss of developmentally achieved functions 6. Fear of loss of or injury to body parts
7. Reactivation of feelings of guilt and shame and accompanying fears of retaliation for previous transgressions. These stresses mobilize all the given factors in a patient’s makeup and previous experience. Patients with chronic life-threatening illness are forced to perceive experientially that they are faced with injury, loss, separations from families and from that which is familiar. All such patients, to a greater or lesser degree, must become dependent and give up control. Illness brings a surrender of autonomy; patients must regress. Some patients are able to regress comfortably, with trust and a sense of security; some may eagerly welcome dependency, however pathological. Patients may, on the other hand, surrender autonomy unwillingly, without trust. They may become frightened, demanding, manipulative, often (in fear) playing one force against the other. Regression can be adaptive, or it can be maladaptive. When maladaptive, regression can lead to interpersonal conflict. Engel and Schmale (2) wrote about one result where such conflict can lead to the “giving up-given up” complex-a conspiracy of mutual distancing. Regression can lead to this kind of withdrawal, or withdrawal into depression. It can also lead to an angry striking out at the world around the patient. The patient’s world contains two significant areas in both the genesis and the evaluation of patients’ reactions. These fields or systems that relate to the patient are: the health care system, nurses and physicians; and family and friends. When discord between these systems and the patient is present, maladaptive processes are apt to occur. Difficulties ensue when the health system is perceived as threatening and nonsupportive: this may occur when the patient is seen as a threat to that system’s concept of itself. When families are nonsupportive and inflexible, responding to changes in the patient with fear, anger, or vindictive behavior, unsuccessful adaptation may lead to increasingly ineffective coping behavior. Even in the absence of major psychopathology, communication may break down in the face of these psychodynamics. Mutual denial by these interrelating systems can finally isolate each from the other. Inevitably, this process results in hostility. Many classic papers describe how poorly physicians can react to hostile, unrewarding patients. “Admitted or not, the fact remains that a few patients kindle aversion, fear, despair or even down339
J. R. McCartney
right malice in their doctors,” says Groves (3). Looking back at the literature, he further states, “Like that of Faust, the doctor’s ideal is to ‘know all, love all, heal all,’ but when this ideal of the perfect physician collides with the quotidian realities of caring for sick and troubled patients, a number of processes may ensue: there may be inappropriate confrontation of the patient; there may be a desperate attempt to avoid or to extrude the patient from the care-giving system.” Patients obviously react to these maladaptive, if human, stances. Where there is a better match between patient and health care system, or where the physician is tolerant, understands, and manages well his own feelings, regression can be adaptive. Patients who regress comfortably may find either realistic or pathological satisfaction of their needs, even in the face of life-threatening chronic illness. When patients’ dependency needs are met, difficulties seldom ensue. Thus, in the absence of delirium or psychotic suicidal drive, reports from psychiatric consultations on medical and surgical floors often contain the statement, “There is very little threat of suicide while the patient remains in the hospital.”
Termination
of Care by Patient
What distinguishes suicide from termination or competent withdrawal? First, it is necessary to understand the elements of a suicidal act or gesture. Next, competent withdrawal from treatment can be examined in an effort to determine the differentiating factors that characterize such a decision. The distinction may appear blurred, but it is the task of the behavioral scientist to assay this tortured behavioral alloy.
Suicide Suicide is always an act against the self and a communication to others for whom the termination of one’s life has some real or hoped-for meaning. Even as a gesture, suicide has elements of an angry cry for help, a destructive, manipulative attempt to extract help, blackmail, or punish. Reich and Kelly (4), characterizing seventeen patients who had attempted suicide while hospitalized, found that under these circumstances, it was an impulsive act associated with interpersonal stress and disturbance of impulse control. Interestingly, anger-not depression-was the affect observed. “In each of the suicide attempts studied, the patients gave signs of rising tension-as anger, agitation, acute psychosis, or sudden changes in 340
mood-and each episode was associated with stress. Instead of the stresses directly related to illness, such as pain, disability, or hopelessness, the suicide attempts seemed to be precipitated acutely by loss of emotional support. In fifteen cases this loss involved descriptions of relationships with medical personnel; in two there were overt conflicts with key family members.” While suicide may be an act of loneliness, of nihilism, of hopelessness and helplessness, the suicide is above all an act of interpersonal anger. Further, it appears from this study that medical personnel becomes, in chronic illness, even more important to the patient than family. Other views of suicide also support the importance of the quality of interpersonal relationships between patient and the systems to which he relates. Teicher and Jacobs (5), writing of adolescent suicide, emphasize that the person who commits suicide has come to believe that the one thing that makes life worthwhile, a reliable relationship with others, has become hopelessly eroded and the only way to end the pain of living is to die. Others see control as the issue. Kiev (6) views the most common dynamic of suicide as the person’s feeling that he has lost control of his life, and the only way to regain control is to end it. With both dynamics, the affective state includes despair, loneliness, alienation, anger, shame, doubt, and guilt. The affective field that characterizes patients’ professional and personal relationships is loaded in negative directions.
Withdrawal
from Treatment
There is a real difference between affects associated with the interpersonal dynamics of suicide and those of a competent choice to withdraw from treatment. While competence is often a legal concept, it has a pre-existent psychiatric usage employed each day in general hospitals. Consulting psychiatrists are frequently asked whether or not a particular patient can be permitted to sign out against medical advice from wards or emergency rooms. Rabkin, Gellerman, and Rice (7) have defined competence as resting on the “test of whether the patient understands the relevant risks and alternatives, and whether the resulting decision reflects a deliberate choice by the patient.” The key word is “deliberate” as opposed to an impulse-ridden, sudden decision. A nondeliberate, impulsive act by a patient, cut off from information from a supportive staff and family, is patently different from the competent decision to withdraw from further treatment. To understand this difference, one must consider
Refusal of Treatment
the affective field between the patient and family, and between the patient and the medical staff and physician. Cassel (8) has written a challenge to the medical profession, stating that its proper and real function is the restoration of autonomy. Autonomy is defined as a sense of authenticity, and is the exercise of a sense of initiative or independence. In the face of chronic illness, the physician may behave in a fashion that maintains or restores to the patient this sense of authenticity; or, the process of caring for the patient can cause the erosion of this essential human quality. Cassel states, “The central question raised by the issue of the patient’s right to be allowed to die or right to refuse the consequences of treatment: is the function of medicine to preserve biological life or to preserve the person as he defines himself? I believe that the function of medicine is to preserve autonomy and the preservation of life is subservient to the primary goal.” McKegney and Lange (9) clearly indicate that patients subjected to chronic hemodialysis should repeatedly be offered the choice of refusal of treatment. Dignity and quality of life are diminished when the strict regimen and discipline required for dialysis to maintain life are an imposed sentence, rather than an informed choice. McKegney and Lange suggest that patients who withdraw from treatment may be “sentient, rational and relatively intact human beings who have decided, balancing all of these factors of present and future, to let nature take its course.” They point to a need for communcation to resolve the “dissonance in values” between patient and staff, but fail to clarify the difference between withdrawal and suicide. In response to the notion that withdrawal is at best “passive suicide,“ one can turn to the classic work of Bibring (lo), who stated, “Finally, there is a decisive difference between the ego killing itself and the ego letting itself die. Only in the first case aggression is involved. Giving up the struggle because one is tired and feels helpless is not identical with self-destruction.”
Case Examples The following cases illustrate the process of choosing to refuse treatment:
Case 1 A 19-year-old woman was hospitalized with an acute
actinomycotic infection. She was apparently coming out of remission from acute myelogenous leukemia. The patient,
unable to sleep,
nauseated,
lying in a
room with blinds pulled, indicated somewhat indirectly to nursing staff that she did not wish a second course of chemotherapy. Appalled at this, the staff sought psychiatric consultation. Although hesitant at first, the patient spoke increasingly freely of her mother, father, and 14-year-old brother. She was seen in daily sessions and begun on a course of nortriptyline, 25 mg t.i.d. Within the week, the blinds were open. Now verbal, the patient spoke to the author as well as several young nurses about her relationships with her mother and father; assuming a remarkably mature acceptance of their foibles, eccentricities, and assets. While the patient continued to refuse further chemotherapy, an alternative frequently explored, she recovered from the manifest infection and returned home. She was seen in outpatient psychotherapy which mainly dealt with impending death while seeking to “live until she died.“The patient stated, at times tearfully, that she did not wish to die; but she continued to refuse the painful alternative of a second course of treatment, which gave little or no promise of recovery and the attendant separation from her family. She outlived her life expectancy by six months before succumbing to an apparent recurrence of the infection in a local hospital near her home. Her mother reflected, “There was a real sense of peace until the end.”
Case 2 A 54-year-old diabetic man with Kimmelstill-Wilson disease, on dialysis for 15 months, was bedridden with severe polyneuropathy. He faced impending total blindness and possible amputation. He had been increasingly demanding of nurses and cried while on the machine. He had alienated much of the nursing staff on the floor where he was hospitalized as well as in the dialysis unit. His wife, who had worked since the time his illness made work impossible for him, still visited him, but frequently left in tears, unable to reassure him. A decision had been reached that ambulatory dialysis was no longer possible and he must enter a nursing home if he planned to continue. Since his wife’s work made him ineligible for Medicare this was not feasible unless they divorced; they had been reluctantly considering this drastic measure as an altemative. Much of the patient’s behavior seemed almost calculated to justify such an action. The author was called to see the patient after he expressed the wish to commit suicide. It rapidly became clear that this man was rational and not suicidal; but he felt trapped without any choice but total alienation from all he held dear. As various choices were examined, termination of dialysis was raised as a possibility. He discussed this alternative in several sessions with the author, and subsequently with his wife. Further discussions were held with the patient and his wife, and later in family session with their two 341
J. R. McCartney grown children. Parallel discussions were held with the physicians in charge of his treatment. By this process of weighing the alternatives and his condition, the patient decided to stop treatment. During this process he had become cooperative and pleasant with the staff and his family. In the 12 days before he died, his wife and children spent much time with him talking of old times. The whole affective field became again positive and accepting, as it had been before his illness. After his death, his wife wrote a note thanking the author for “giving back” her husband to her.
Case 3 A 64-year-old man had had adult-onset diabetes for 15 years and was suffering from chronic renal failure. In 1971 he suffered from a basilar artery thrombosis. In 1974 he began having preinfarction angina. In 1977 he had a myocardial infarction, was admitted following a cardiac arrest, and the next day became frankly uremic. He was begun on peritoneal dialysis. A month later an arteriovenous fistula was established from chronic hemodialysis. The patient experienced numerous difficulties with this fistula. Numerous fluid overloads further complicated his course. Despite intensive work with the patient and his wife, the need for control of dietary intake remained a battlefield. Despite frequent detailed explanation, procedures were often misunderstood. The patient often comhow sick I am.” From plained, “no one understands time to time he expressed suicidal thoughts and was quite depressed. On the two-month anniversary of his fistula, he locked himself in the bathroom at home, taking an entire bottle of NPH U 40 insulin, instead of his usual lo-unit dosage. When discovered and removed to the hospital and treated for hypoglycemia, the patient seemed instantly comfortable as his family rallied around. He denied any suicidal intent or act. His physicians, recognizing this family interaction, referred the patient and his family for family therapy. This was begun promptly in the hospital. After several sessions, the family, which had resisted open affective communication, terminated therapy, claiming there was no need. Soon the patient again had numerous complaints, was frequently overloaded with fluids, and appeared depressed. His wife contacted the physician in charge stating, “He needs another one of your pep talks, doctor.”
Discussion The first two of these cases began with the patients apparently exceedingly troubled, in affective turmoil. They were angry and filled with shame and guilt. As communication was established and feelings discussed, positive affective bonds were re342
established to both their families and the health care system. The affective relationships with both systems had been positive in the past. In the process of discussing both the facts of their situation and their feelings about it, the patients experienced a restoration of sense of self and a return to former methods of relating and coping. In a sapient, deliberate, nonhostile fashion, with open discussions with both families and doctors, the patients moved to a competent decision to withdraw from further treatment. The affective fields were positive, loving, and nonpunitive. Other patients with restoration of autonomy, given choice, decide to continue treatment. When patients have an authentic sense of self, it is not life they refuse, but the consequences of treatment. The third case represents the other end of the spectrum. Chronically ill, his patience and that of his family exhausted, the patient’s marginal affective bonds with his family deteriorated. There was apparent absence of empathy. Communication was maladaptive and dissonant and marked by coercive manipulation, anger, and mutual isolation. The patient’s suicidal gestures, while temporarily reparative, led only to repetition of the angry approach that characterized his relationships to family and staff.
Summary Physicians are trained to believe that death is an enemy, and any acceptance of its inevitability is seen as failure. A patient’s decision to let nature take its course is seen, at best, as passive suicide. Despite the twin values of medicine, of helping and healing, actually to consider with a patient the alternative of choosing to terminate treatment is seen by some as assisting suicide. Yet, to encourage patients to consider choices, and to support their right to choose, may in fact restore authenticity, and thus enable them to elect the painful alternative of continuing treatment. Psychiatrists and physicians, in the process of evaluating the patient, offer a therapeutic interaction in which they can clarify for patients, staff, and families the difference between suicide and the exercise of the patient’s right to withdraw or refuse treatment in a competent, rational fashion. Clinical assessment of this difference, in the absence of overt psychosis and incompetence, appears possible when consideration is given to immediate and historical examination of the dynamics of interactions between the patient and the two significant systems with which he relates, that is,
Refusal of Treatment
the family and the health care system. The affective tone or field associated with the interactions is an all-important factor. When the field is positive and life centered, it is more often representative of a competent, deliberate, rational choice than when it is death centered, hostile, and angry. Lack of communication and separation from significant ties, engendering a sense of loss with an accompanying affect of reactive anger, is apt to lead to impulsive, irrational acts of suicide. As chronic illness encroaches upon the patient’s life, the ties to the health care system become equally important in understanding the dynamics of the patient’s ac-
tions . Chronic illness stresses all systems-the patient’s own self system, the family system, and the health care system. This fact is important not only in predictive studies, but also in prevention. Patients need the support of families and staff if they are to succeed in their efforts to remain human in the face of the dehumanizing stress of chronic illness and its disconnecting, isolating force. Families need the support of the health care system to maintain or achieve support of the patient in the face of illness and potential loss. Staff needs support to handle their sense of impotence and frustration if they are to maintain their role as helper, if not healer, to the sick, and to accept the patient “where he is.” All systems are inevitably locked together in either an adaptive or maladaptive pattern. Psychiatry, with its knowledge of both intrapersonal and interpersonal dynamics, needs to play an increasing role in medicine’s efforts to help patients cope with chronic and terminal illness.
References 1. Strain JJ, Grossman S: Psychological Care of the Medically Ill. New York, Appleton-Century-Crofts, 1975, pp. 23-36 2. Engel GL, Schmale AH: Psychoanalytic theory of somatic disorder, conversion, specificity and the disease onset situation. J Am Psychoanal Assoc 15:334-365, 1967 3. Groves JE: Taking care of the hateful patient. N Engl J Med 298883-887, 1978 4. Reich P, Kelly MJ: Suicide attempts by hospitalized medical and surgical patients. N Engl J Med 294:300, 1976 5. Teicher JD, Jacobs J: Broken homes and social isolation in attempted suicides of adolescents. Int J Sot Psych 13:139-149, 1967 6. Kiev A: The Suicidal Patient. Chicago, Nelson-Hall, 1977 7. Rabkin MT, Gellerman G, Rice NR: Order not to resuscitate. N Engl J Med 295:365, 1976 8. Cassell EJ: The function of medicine. Hastings Center Report 716-19, 1977 9. McKegney FP, Lange I’: The decision to no longer live on chronic hemodialysis. Am J Psych 128:47-54,197l 10. Bibring E: The mechanism of depression. In Gaylin W (ed). The Meaning of Despair. New York, Science House, 1968, p. 180
Direct reprint requests to: James R. McCartney, M.D. Department of Psychiatry North Shore University Hospital 300 Community Drive Manhasset, NY 11030
343
Refusal of Treatment Suicide or Competent Choice James R. McCartney,
M.D.
Associate Professor of Clinical Psychiatry, Cornell University Medical College, New York, New York Chief, Consultation and Liaison Psychiatry, North Shore University Hospital, Manhasset, New York
Abstract: Increasingly,
patients are exercising the right to refuse treatment. Patients who have been chronically ill or those who consider themselves terminally ill are most apt to do so. Accordingly, liaison psychiatrists are asked to determine whether refusal of treatment is an act of suicide or a competent choice. This is difficult to assess in the absence of delirium or overt psychosis. It is suggested that the dynamics and affective tones of the patients’ reaction to the health care system as well as to family andfriends are of major sign@ance in this determination. The actual process of exploring these areas with patients making this choice is often therapeutic in restoring the patients’ sense of control or authenticity. Often this process enables them to continue treatment and avoid the impulsive interpersonal anger that characterizes the suicidal act.
Modern medicine has had a technologic explosion. Our capacity to treat life-threatening illness, to sustain biologic function by physiologic or pharmacologic means is increasing. Often therapy is symptomatic rather than corrective or curative, but patients are being offered opportunities to extend 338 ISSN 0163~8343179D40338-OMW2.25
life. Their hope for cure is mirrored by our scientific zeal in pursuit of definitive answers that still evade our grasp. Our doubts as physicians that the “cure is as bad as the disease” may haunt our more pensive moments. Shaken, some physicians have moved toward therapeutic nihilism and would perhaps prematurely withhold treatment, cease treating, “pull the plug.” Others grimly endeavor to expand knowledge, regardless of the individual cost. At best, medical decisions are a resolution of the vectors of healing, helping, and hurting. The resultant decisions are ethical at their core. The scientific and ethical issues troubling medicine are increasingly debated openly in both medical and lay journals. It is not an abstract debate to thousands of patients but a deeply personal experience for them and their families. For many it is an excruciating decision whether or not to accept open heart surgery, continue dialysis, accept a kidor attempt a second course of ney transplant, chemotherapy for cancer in the face of mounting Gmml Hospital Psychiat y @ Elsevier North Holland, Inc., 1979
Refusal of Treatment
difficulties. The stress of these choices and the procedures that follow impacts upon their lives with cataclysmic force. The mechanical, biologic, psychologic, and interpersonal traumas associated with chronic illness of this proportion and seriousness extract a toll that inevitably challenges the most optimistic and relatively easily denervates the fiercest denier of reality. Although patients’ right to treatment as well as the right to refuse treatment are well established legally, the process of reaching these decisions is poorly understood and conflict ridden. The choice is complex. The medical risks in this age of informed consent are presented to people already threatened by illness. Illness threatens patients with dissolution of self-image, personal roles, and interpersonal relationships. No choice is achieved without tortuous debating of the knowns and unknowns. Yet physicians earnestly endeavoring to defeat the enemy, death, frequently rush the decision by either assuming consent or viewing hesitation as manifestation of the patient’s self-defeating depression. While there has always been a need to determine the suicidal potential in patients grappling with such choices, psychiatrists, particularly those involved in consultation and liaison work, are more frequently asked to advise the medical or surgical team whether the decision to refuse treatment is an exercise of their right, or a manifestation of suicidal intent or drive. Even doubt and hesitation to choose are viewed with suspicion. Both patient and physician may begin to doubt the motives, the knowledge, the faith of the other. At this point, the psychiatrist may be called.
The Stress of Illness and Treatment The literature is crowded with explorations of the stresses that illness and hospitalization place upon patients. The complexity of these experiences and the interpersonal and medical problems that arise are well defined. Strain and Grossman’s (1) book, Psychological Care of the Medically 111, describes the categories of stress that patients experience. Seven categories of vulnerability are delineated: 1. 2. 3. 4. 5.
The basic threat to narcissistic integrity Fear of strangers Separation anxiety Fear of the loss of love and approval Fear of the loss of developmentally achieved functions 6. Fear of loss of or injury to body parts
7. Reactivation of feelings of guilt and shame and accompanying fears of retaliation for previous transgressions. These stresses mobilize all the given factors in a patient’s makeup and previous experience. Patients with chronic life-threatening illness are forced to perceive experientially that they are faced with injury, loss, separations from families and from that which is familiar. All such patients, to a greater or lesser degree, must become dependent and give up control. Illness brings a surrender of autonomy; patients must regress. Some patients are able to regress comfortably, with trust and a sense of security; some may eagerly welcome dependency, however pathological. Patients may, on the other hand, surrender autonomy unwillingly, without trust. They may become frightened, demanding, manipulative, often (in fear) playing one force against the other. Regression can be adaptive, or it can be maladaptive. When maladaptive, regression can lead to interpersonal conflict. Engel and Schmale (2) wrote about one result where such conflict can lead to the “giving up-given up” complex-a conspiracy of mutual distancing. Regression can lead to this kind of withdrawal, or withdrawal into depression. It can also lead to an angry striking out at the world around the patient. The patient’s world contains two significant areas in both the genesis and the evaluation of patients’ reactions. These fields or systems that relate to the patient are: the health care system, nurses and physicians; and family and friends. When discord between these systems and the patient is present, maladaptive processes are apt to occur. Difficulties ensue when the health system is perceived as threatening and nonsupportive: this may occur when the patient is seen as a threat to that system’s concept of itself. When families are nonsupportive and inflexible, responding to changes in the patient with fear, anger, or vindictive behavior, unsuccessful adaptation may lead to increasingly ineffective coping behavior. Even in the absence of major psychopathology, communication may break down in the face of these psychodynamics. Mutual denial by these interrelating systems can finally isolate each from the other. Inevitably, this process results in hostility. Many classic papers describe how poorly physicians can react to hostile, unrewarding patients. “Admitted or not, the fact remains that a few patients kindle aversion, fear, despair or even down339
J. R. McCartney
right malice in their doctors,” says Groves (3). Looking back at the literature, he further states, “Like that of Faust, the doctor’s ideal is to ‘know all, love all, heal all,’ but when this ideal of the perfect physician collides with the quotidian realities of caring for sick and troubled patients, a number of processes may ensue: there may be inappropriate confrontation of the patient; there may be a desperate attempt to avoid or to extrude the patient from the care-giving system.” Patients obviously react to these maladaptive, if human, stances. Where there is a better match between patient and health care system, or where the physician is tolerant, understands, and manages well his own feelings, regression can be adaptive. Patients who regress comfortably may find either realistic or pathological satisfaction of their needs, even in the face of life-threatening chronic illness. When patients’ dependency needs are met, difficulties seldom ensue. Thus, in the absence of delirium or psychotic suicidal drive, reports from psychiatric consultations on medical and surgical floors often contain the statement, “There is very little threat of suicide while the patient remains in the hospital.”
Termination
of Care by Patient
What distinguishes suicide from termination or competent withdrawal? First, it is necessary to understand the elements of a suicidal act or gesture. Next, competent withdrawal from treatment can be examined in an effort to determine the differentiating factors that characterize such a decision. The distinction may appear blurred, but it is the task of the behavioral scientist to assay this tortured behavioral alloy.
Suicide Suicide is always an act against the self and a communication to others for whom the termination of one’s life has some real or hoped-for meaning. Even as a gesture, suicide has elements of an angry cry for help, a destructive, manipulative attempt to extract help, blackmail, or punish. Reich and Kelly (4), characterizing seventeen patients who had attempted suicide while hospitalized, found that under these circumstances, it was an impulsive act associated with interpersonal stress and disturbance of impulse control. Interestingly, anger-not depression-was the affect observed. “In each of the suicide attempts studied, the patients gave signs of rising tension-as anger, agitation, acute psychosis, or sudden changes in 340
mood-and each episode was associated with stress. Instead of the stresses directly related to illness, such as pain, disability, or hopelessness, the suicide attempts seemed to be precipitated acutely by loss of emotional support. In fifteen cases this loss involved descriptions of relationships with medical personnel; in two there were overt conflicts with key family members.” While suicide may be an act of loneliness, of nihilism, of hopelessness and helplessness, the suicide is above all an act of interpersonal anger. Further, it appears from this study that medical personnel becomes, in chronic illness, even more important to the patient than family. Other views of suicide also support the importance of the quality of interpersonal relationships between patient and the systems to which he relates. Teicher and Jacobs (5), writing of adolescent suicide, emphasize that the person who commits suicide has come to believe that the one thing that makes life worthwhile, a reliable relationship with others, has become hopelessly eroded and the only way to end the pain of living is to die. Others see control as the issue. Kiev (6) views the most common dynamic of suicide as the person’s feeling that he has lost control of his life, and the only way to regain control is to end it. With both dynamics, the affective state includes despair, loneliness, alienation, anger, shame, doubt, and guilt. The affective field that characterizes patients’ professional and personal relationships is loaded in negative directions.
Withdrawal
from Treatment
There is a real difference between affects associated with the interpersonal dynamics of suicide and those of a competent choice to withdraw from treatment. While competence is often a legal concept, it has a pre-existent psychiatric usage employed each day in general hospitals. Consulting psychiatrists are frequently asked whether or not a particular patient can be permitted to sign out against medical advice from wards or emergency rooms. Rabkin, Gellerman, and Rice (7) have defined competence as resting on the “test of whether the patient understands the relevant risks and alternatives, and whether the resulting decision reflects a deliberate choice by the patient.” The key word is “deliberate” as opposed to an impulse-ridden, sudden decision. A nondeliberate, impulsive act by a patient, cut off from information from a supportive staff and family, is patently different from the competent decision to withdraw from further treatment. To understand this difference, one must consider
Refusal of Treatment
the affective field between the patient and family, and between the patient and the medical staff and physician. Cassel (8) has written a challenge to the medical profession, stating that its proper and real function is the restoration of autonomy. Autonomy is defined as a sense of authenticity, and is the exercise of a sense of initiative or independence. In the face of chronic illness, the physician may behave in a fashion that maintains or restores to the patient this sense of authenticity; or, the process of caring for the patient can cause the erosion of this essential human quality. Cassel states, “The central question raised by the issue of the patient’s right to be allowed to die or right to refuse the consequences of treatment: is the function of medicine to preserve biological life or to preserve the person as he defines himself? I believe that the function of medicine is to preserve autonomy and the preservation of life is subservient to the primary goal.” McKegney and Lange (9) clearly indicate that patients subjected to chronic hemodialysis should repeatedly be offered the choice of refusal of treatment. Dignity and quality of life are diminished when the strict regimen and discipline required for dialysis to maintain life are an imposed sentence, rather than an informed choice. McKegney and Lange suggest that patients who withdraw from treatment may be “sentient, rational and relatively intact human beings who have decided, balancing all of these factors of present and future, to let nature take its course.” They point to a need for communcation to resolve the “dissonance in values” between patient and staff, but fail to clarify the difference between withdrawal and suicide. In response to the notion that withdrawal is at best “passive suicide,“ one can turn to the classic work of Bibring (lo), who stated, “Finally, there is a decisive difference between the ego killing itself and the ego letting itself die. Only in the first case aggression is involved. Giving up the struggle because one is tired and feels helpless is not identical with self-destruction.”
Case Examples The following cases illustrate the process of choosing to refuse treatment:
Case 1 A 19-year-old woman was hospitalized with an acute
actinomycotic infection. She was apparently coming out of remission from acute myelogenous leukemia. The patient,
unable to sleep,
nauseated,
lying in a
room with blinds pulled, indicated somewhat indirectly to nursing staff that she did not wish a second course of chemotherapy. Appalled at this, the staff sought psychiatric consultation. Although hesitant at first, the patient spoke increasingly freely of her mother, father, and 14-year-old brother. She was seen in daily sessions and begun on a course of nortriptyline, 25 mg t.i.d. Within the week, the blinds were open. Now verbal, the patient spoke to the author as well as several young nurses about her relationships with her mother and father; assuming a remarkably mature acceptance of their foibles, eccentricities, and assets. While the patient continued to refuse further chemotherapy, an alternative frequently explored, she recovered from the manifest infection and returned home. She was seen in outpatient psychotherapy which mainly dealt with impending death while seeking to “live until she died.“The patient stated, at times tearfully, that she did not wish to die; but she continued to refuse the painful alternative of a second course of treatment, which gave little or no promise of recovery and the attendant separation from her family. She outlived her life expectancy by six months before succumbing to an apparent recurrence of the infection in a local hospital near her home. Her mother reflected, “There was a real sense of peace until the end.”
Case 2 A 54-year-old diabetic man with Kimmelstill-Wilson disease, on dialysis for 15 months, was bedridden with severe polyneuropathy. He faced impending total blindness and possible amputation. He had been increasingly demanding of nurses and cried while on the machine. He had alienated much of the nursing staff on the floor where he was hospitalized as well as in the dialysis unit. His wife, who had worked since the time his illness made work impossible for him, still visited him, but frequently left in tears, unable to reassure him. A decision had been reached that ambulatory dialysis was no longer possible and he must enter a nursing home if he planned to continue. Since his wife’s work made him ineligible for Medicare this was not feasible unless they divorced; they had been reluctantly considering this drastic measure as an altemative. Much of the patient’s behavior seemed almost calculated to justify such an action. The author was called to see the patient after he expressed the wish to commit suicide. It rapidly became clear that this man was rational and not suicidal; but he felt trapped without any choice but total alienation from all he held dear. As various choices were examined, termination of dialysis was raised as a possibility. He discussed this alternative in several sessions with the author, and subsequently with his wife. Further discussions were held with the patient and his wife, and later in family session with their two 341
J. R. McCartney grown children. Parallel discussions were held with the physicians in charge of his treatment. By this process of weighing the alternatives and his condition, the patient decided to stop treatment. During this process he had become cooperative and pleasant with the staff and his family. In the 12 days before he died, his wife and children spent much time with him talking of old times. The whole affective field became again positive and accepting, as it had been before his illness. After his death, his wife wrote a note thanking the author for “giving back” her husband to her.
Case 3 A 64-year-old man had had adult-onset diabetes for 15 years and was suffering from chronic renal failure. In 1971 he suffered from a basilar artery thrombosis. In 1974 he began having preinfarction angina. In 1977 he had a myocardial infarction, was admitted following a cardiac arrest, and the next day became frankly uremic. He was begun on peritoneal dialysis. A month later an arteriovenous fistula was established from chronic hemodialysis. The patient experienced numerous difficulties with this fistula. Numerous fluid overloads further complicated his course. Despite intensive work with the patient and his wife, the need for control of dietary intake remained a battlefield. Despite frequent detailed explanation, procedures were often misunderstood. The patient often comhow sick I am.” From plained, “no one understands time to time he expressed suicidal thoughts and was quite depressed. On the two-month anniversary of his fistula, he locked himself in the bathroom at home, taking an entire bottle of NPH U 40 insulin, instead of his usual lo-unit dosage. When discovered and removed to the hospital and treated for hypoglycemia, the patient seemed instantly comfortable as his family rallied around. He denied any suicidal intent or act. His physicians, recognizing this family interaction, referred the patient and his family for family therapy. This was begun promptly in the hospital. After several sessions, the family, which had resisted open affective communication, terminated therapy, claiming there was no need. Soon the patient again had numerous complaints, was frequently overloaded with fluids, and appeared depressed. His wife contacted the physician in charge stating, “He needs another one of your pep talks, doctor.”
Discussion The first two of these cases began with the patients apparently exceedingly troubled, in affective turmoil. They were angry and filled with shame and guilt. As communication was established and feelings discussed, positive affective bonds were re342
established to both their families and the health care system. The affective relationships with both systems had been positive in the past. In the process of discussing both the facts of their situation and their feelings about it, the patients experienced a restoration of sense of self and a return to former methods of relating and coping. In a sapient, deliberate, nonhostile fashion, with open discussions with both families and doctors, the patients moved to a competent decision to withdraw from further treatment. The affective fields were positive, loving, and nonpunitive. Other patients with restoration of autonomy, given choice, decide to continue treatment. When patients have an authentic sense of self, it is not life they refuse, but the consequences of treatment. The third case represents the other end of the spectrum. Chronically ill, his patience and that of his family exhausted, the patient’s marginal affective bonds with his family deteriorated. There was apparent absence of empathy. Communication was maladaptive and dissonant and marked by coercive manipulation, anger, and mutual isolation. The patient’s suicidal gestures, while temporarily reparative, led only to repetition of the angry approach that characterized his relationships to family and staff.
Summary Physicians are trained to believe that death is an enemy, and any acceptance of its inevitability is seen as failure. A patient’s decision to let nature take its course is seen, at best, as passive suicide. Despite the twin values of medicine, of helping and healing, actually to consider with a patient the alternative of choosing to terminate treatment is seen by some as assisting suicide. Yet, to encourage patients to consider choices, and to support their right to choose, may in fact restore authenticity, and thus enable them to elect the painful alternative of continuing treatment. Psychiatrists and physicians, in the process of evaluating the patient, offer a therapeutic interaction in which they can clarify for patients, staff, and families the difference between suicide and the exercise of the patient’s right to withdraw or refuse treatment in a competent, rational fashion. Clinical assessment of this difference, in the absence of overt psychosis and incompetence, appears possible when consideration is given to immediate and historical examination of the dynamics of interactions between the patient and the two significant systems with which he relates, that is,
Refusal of Treatment
the family and the health care system. The affective tone or field associated with the interactions is an all-important factor. When the field is positive and life centered, it is more often representative of a competent, deliberate, rational choice than when it is death centered, hostile, and angry. Lack of communication and separation from significant ties, engendering a sense of loss with an accompanying affect of reactive anger, is apt to lead to impulsive, irrational acts of suicide. As chronic illness encroaches upon the patient’s life, the ties to the health care system become equally important in understanding the dynamics of the patient’s ac-
tions . Chronic illness stresses all systems-the patient’s own self system, the family system, and the health care system. This fact is important not only in predictive studies, but also in prevention. Patients need the support of families and staff if they are to succeed in their efforts to remain human in the face of the dehumanizing stress of chronic illness and its disconnecting, isolating force. Families need the support of the health care system to maintain or achieve support of the patient in the face of illness and potential loss. Staff needs support to handle their sense of impotence and frustration if they are to maintain their role as helper, if not healer, to the sick, and to accept the patient “where he is.” All systems are inevitably locked together in either an adaptive or maladaptive pattern. Psychiatry, with its knowledge of both intrapersonal and interpersonal dynamics, needs to play an increasing role in medicine’s efforts to help patients cope with chronic and terminal illness.
References 1. Strain JJ, Grossman S: Psychological Care of the Medically Ill. New York, Appleton-Century-Crofts, 1975, pp. 23-36 2. Engel GL, Schmale AH: Psychoanalytic theory of somatic disorder, conversion, specificity and the disease onset situation. J Am Psychoanal Assoc 15:334-365, 1967 3. Groves JE: Taking care of the hateful patient. N Engl J Med 298883-887, 1978 4. Reich P, Kelly MJ: Suicide attempts by hospitalized medical and surgical patients. N Engl J Med 294:300, 1976 5. Teicher JD, Jacobs J: Broken homes and social isolation in attempted suicides of adolescents. Int J Sot Psych 13:139-149, 1967 6. Kiev A: The Suicidal Patient. Chicago, Nelson-Hall, 1977 7. Rabkin MT, Gellerman G, Rice NR: Order not to resuscitate. N Engl J Med 295:365, 1976 8. Cassell EJ: The function of medicine. Hastings Center Report 716-19, 1977 9. McKegney FP, Lange I’: The decision to no longer live on chronic hemodialysis. Am J Psych 128:47-54,197l 10. Bibring E: The mechanism of depression. In Gaylin W (ed). The Meaning of Despair. New York, Science House, 1968, p. 180
Direct reprint requests to: James R. McCartney, M.D. Department of Psychiatry North Shore University Hospital 300 Community Drive Manhasset, NY 11030
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