INT'L. J. PSYCHIATRY IN MEDICINE, Vol. 7(2), 1976-77
PSYCHIATRIC DAY HOSPITAL TREATMENT OF TERMINALLY ILL PATIENTS
STANLEY E. SLIVKIN, M.D. Chief, Day Hospital, Boston V. A. Hospital Associate Clinical Professor of Psychiatry Tufts University School of Medicine
The psychiatric Day Hospital offers a forum for working out bereavement issues of terminally ill patients. Through individual and group psychotherapy, patients and their families are assisted in coping with the issues of death and dying. Coordination of medical, surgical, and psychiatric treatment of dying patients is enhanced by Day Hospital educational and treatment programs which afford continuity of care at the interface area between treatment specialties.
The Day Hospital of the Psychiatry Service at the Boston Veterans Administration Hospital was developed six years ago as a viable alternative to inpatient admission. Patients with the capacity to commute and with a caring family or friend at home were deemed acceptable for admission to the treatment program. As a result of this open-ended orientation we have developed a broad spectrum of approaches to psychotherapy with a wide variety of patients. The author envisioned as one part of the program a coordinated approach to utilize the Day Hospital systematically in an effort to meet the psychosocial needs of the terminally ill patient. This required the integrated mobilization of all levels of medical, surgical and psychiatric support systems to assess realistically the needs of patients and their families. Steps were implemented at the same time to increase communication and to strengthen and coordinate treatment planning regardless of which particular discipline was involved at any given time with a patient.
123 @ 1977,Baywood Publishing Co., Inc.
doi: 10.2190/VC5Q-BKEM-JUEM-LEP9 http://baywood.com
124 / STANLEY E . S L l V K I N
Psychosocial Needs of the Terminal Patient Terminal illness initiates a complex psychopolitical process involving patients, families and helpers. As Weisman has stated, to be a responsive and responsible physician is almost an impossible profession in the presence of incurable diseases and dying [ 11. Just at the time when a doctor needs his skill and knowledge, they fail him; he is forced to improvise, and at times his art becomes artifice. At this point the psychiatrist frequently is introduced into the picture as a consultant to determine the patient’s needs and strengths. He or she often remains as the patient’s ombudsman in supporting all efforts to deal with the ultimate loss of self. Since the medical hospital milieu may discourage efforts by patient and family alike to cope with the finality of loss of life, the author postulated that involvement in the Day Hospital program could become the matrix for continuity in the integration of psychosocial treatment planning for terminally ill patients. Despite misgivings about possible rejection of the terminally ill by other group members because of heightened anxiety in group transactions, it has been our experience that the psychiatric patient group has been supportive of terminally ill patients. Family members have been accepted warmly into group therapy sessions and have been helped to give up their denial. Removal of communication barriers has clarified bereavement issues on all sides with relief of tension. Death has become less frightening to all participants and it is now acceptable to share feelings of fear, anxiety, anger and depression without embarrassment. Acceptance rather than resignation has become an accessible goal for patients, families and helpers alike. Kastenbaum and Aisenberg have implied that our culture does not possess an integrated, consensually validated death system [ 2 ] . Participants in the death situation, whatever their role, are seldom provided with effective answers and emotional support in a cultural system that depersonalizes, neutralizes, specializes and fragments the topic. In contrast, day hospital treatment encourages the development of the necessary support systems to allow the patient to die with reasonable dignity. Since periodic medical or surgical readmissions of our terminally ill patients for treatment leads to communications breakdown occasionally at the interface between psychiatry and the medical or surgical specialties, it is essential to follow these patients during their inpatient admissions to work through bereavement issues which may result in rejection, isolation, sensory deprivation or struggles for control. As Kubler-Ross has pointed out, members of the helping professions need to be more aware of the discrepancy or conflict between the patient and his environment, in order to share their awareness with their patients’ families and be of greater assistance t o patients and their families . Medical staff frequently allows itself to be caught up in control issues resulting from angry protest by the patient as part of his anticipatory grief work. Since the patient loses the most -his life - it becomes important to
D A Y HOSPITAL TREATMENT OF THE TERMINALLY I L L I
point out to the treating staff that the patient controls so little about his dying that any small concessions can be ego-integrating. The patient who is allowed some control over his medication needs, food service, television usage and family visits tends to be less fearful of abandonment. Total control by medical and nursing staff can lead some patients to become more depressed, suicidal or psychotic. According to Verwoerdt, the terminally ill patient in such circumstances is left with only one basic freedom in shaping his life - that of determining what his attitude will be towards his destiny . It is in this area that we have found our support to be most helpful.
Case Reports The following case vignettes illustrate how a psychiatric day program can be useful in the treatment of terminal patients. CASE 1
A twentyeight-year-old veteran who had developed generalized necrotic ulcerations of his skin following service in Vietnam had extensive evaluation by medical, dermatological and infectious disease consultants with no diagnosis established. When, by exclusion, a diagnosis of factitious dermatitis was made, he was admitted to the Day Hospital for psychotherapy, but a steady downhill course physically led to multiple medical readmissions. The disturbing odor of his necrotic lesions and his grotesque appearance led to unconscious rejection by treating staff. Complaints by his family led to feelings by the helpers that the patient was manipulating treating staff and family alike. A further difficulty was the fact that the patient’s mother, a former nurse who engaged her son in a seductive relationship, had succeeded in antagonizing the nursing staff. Treatment by the Day Hospital staff focused on the psychosocial aspects of the patient’s illness. Daily visits by the author included innumerable conferences with treating personnel to work through the presented “reality issues,” emphasizing the underlying cause of the problems as anticipatory grief on all sides which was out of phase. Following the patient’s medical readmission, the author’s exclusion from the patient’s room because of prescribed isolation precautions was dealt with in a direct confrontation with medical treating staff in which they realized that the intensity of restrictions had caused the patient to hallucinate because of sensory deprivation. When the restriction was removed, increased sensory input led to a more peaceful death for the patient. Autopsy findings revealed the cause of death as leukemia, histiocytic type. CASE 2
A thirty-four-year-old married veteran had hypercalciuria, nephrocalcinosis and ureterolithiasis dating back to March 1968. Hyperparathyroidism was ruled
126 / STANLEY E . S L I V K I N
out, and an eventual diagnosis of primary oxalosis was established. In the latter half of 1972, the patient was referred to the Day Hospital because of depression and drug dependence, and worked through issues related to his divorce, remarriage and severe medical problems. The patient’s depressive symptomatology disappeared and he was doing well until he developed total renal failure in February 1973. When peritoneal dialysis and later renal dialysis became essential to maintain his life, the patient acted out his anxiety, anger and depression with resultant rejection by treating personnel. He also managed to wedge successfully between the various groups of helpers so that it became difficult to manage his medical problem. The author met frequently with medical renal and dialysis staffs to emphasize the need for placing limits on the patient’s behavior. At the same time the psychological concomitants of his fears of dying were worked out in Day Hospital group sessions. When the patient became suicidal after learning that cadaver renal transplantation was not possible because-of the oxalosis, the author worked with staff to set limits on the behavior of Day Hospital patients who empathized with the patient’s wish to die and brought him proscribed food and drink. The patient had been brought back to the hospital on several occasions in coma induced by hyperkalemia due to improper diet. These issues were fully explored and dealt with successfully in group sessions. Of the patient’s sixty-eight admissions, seven were to the Day Hospital. The patient eventually died from hepatitis and hepatorenal failure. The Day Hospital staff continued to offer support to the patient’s widow and children, who were honored guests at our last Christmas party. CASE 3
This fifty-five-year-oldveteran was admitted to the hospital for abdominalperineal resection of adenocarcinoma of the rectum in July 1973. Because of postoperative depression which manifested itself as difficulty in irrigatihg the colostomy, the patient was admitted to the Day Hospital. After several months of psychotherapy the patient was able to return to work. In June 1974, following an episode of gross hematuria, he had a right nephrectomy for metastatic carcinoma of the kidney and subsequently developed metastases to the liver, spine and brain. The author followed the patient through inpatient admissions for radiotherapy and chemotherapy. Working his feelings through about his death, the patient went from denial to acceptance of the inevitability of the outcome. The patient’s wife, showing evidence of the stress of the inexorable course of his illness, has received support from the Day Hospital staff and the patient group.
D A Y HOSPITAL TREATMENT
OF THE TERMINALLY I L L I 127
Treatment Issues A major problem to be dealt with in the treatment of the terminal patient is the simultaneous interdigitating mourning process which affects patients, families and helpers alike. If all are in symmetrical and syntonic phases, there are no visible problems with which to deal. But when dyssymmetry leads to dysphoric reactions, the resulting conflicts are often represented by staff as being due to reality issues rather than the denied anticipatory grief. A further complication is the tendency to shift quickly from one mourning stage to another depending upon external and sometimes extraneous factors in the patient’s life. A medical decision to treat or not treat a given complication might lift a patient’s spirits or plunge him into the depths of despair, with consequent staff reactions. As Lifton and Olson have stated, the acceptability of death depends upon the psychological context in which it occurs . The author has found that the nuances of the mourning process are frequently overlooked by the medical or surgical specialist who concentrates only on the disease process. As described by Schoenberg, the painful feelings of guilt, depression and helplessness engendered in the physician are usually alleviated by emotional withdrawal and avoidance . Death is equated, unfortunately, as a personal medical failure by many professionals who have been conditioned by their training to expect success. In the author’s experience, medical and nursing staff often interpret denial, anger, or depression as good or bad depending upon the quantity of affect aroused in patients, families or helpers. In order to enhance the staffs acceptance of the patient’s psychosocial needs, it is crucial to assess the patient’s personality structure and his previous methods of coping with stress and losses. Whenever possible, assessment should include interviews with significant family members to permit a more complete evaluation. Based on such evaluations, reasonable predictions can be made about probable areas of conflict between the patient and the treating staff. It becomes crucial to communicate these impressions to all helpers as well as to significant family members, and to share with them a frame of reference for interactions with the patient. Open communication obviates the need for the usual game playing on all sides and permits the kind of atmosphere that encourages patients to trust all involved in giving them emotional support. It also improves the likelihood that a patient might better accept his impending death. The quality of life or death for the patient depends to a large degree on a process of psychosocial and medical integration which is facilitated by psychotherapy in the Day Hospital or in the ward setting itself. As Rosenthal has stated, if psychotherapy makes it easier for the living to live, it can also make it easier for the dying to die . The author visits patients regularly during inpatient admission periods and discusses the patients’ psychosocial needs with all members of the treatment
STANLEY E. SLlVKlN
team. Specific recommendations are spelled out to prevent isolation and reduce anxiety. The importance of allowing the patient to ventilate feelings as a substitute for demands for pain medication is pointed out, as well as the relationship between fear of abandonment and the escalation of demands for narcotics. Whenever disputes arise between the various treating disciplines, meetings of all concerned parties are arranged to obtain resolution and to help treating personnel deal with their own intrapsychic responses to the emotional threat imposed by the terminally ill patient. Whenever it proves necessary, the author meets with involved individuals to help them to understand better why they find the dying patient to be so trying for them personally. At times, brief supportive psychotherapy for helpers is indicated. ETHICAL ISSUES
Del Rio has pointed out that to the rights of the individual one must add the rights of the group, and sometimes collective right becomes imperative . He describes individual and group rights, as well as those of the society to which they belong. When dealing with terminal patients in a Day Hospital setting, one is compelled to examine the issue of group rights and more importantly the issue of confidentiality, since patients are expected to share their most intimate feelings about dying with other group members. Not only is the usual give and take of group process required, but also a need for sensitivity on the part of staff and group members alike in dealing with shared confidences about loss and death. Redlich and Mollica have noted that the problem of confidentiality is particularly difficult in group and couples therapy, since patients are under no professional ethical obligation of confidentiality  . Although a therapeutic group leader stresses the practical necessity of not discussing therapy issues outside of group as they involve group members, he cannot as a practical matter prevent this from happening. In the author’s experience, the very intensity of the emotional response of group members to the issues of death and dying has dampened the need to talk outside of group. Psychiatric patients become so emotionally committed to the dying medical patient, once he has been accepted as a valid group member, that they are constrained from gossip by the very nature of the relationship. Another ethical issue is that of the psychiatrist’s responsibility in the treatment of terminal patients. The American Psychiatric Association’s 1973 annotations to the Principles of Medical Ethics as delineated by the American Medical Association [ 101 state quite clearly that when the psychiatrist assumes a collaborative or supervisory role with another mental health worker, he must expend sufficient time to assure that proper care is given. It is contrary to the interests of the patient and to patient care if he allows himself to be used as a figurehead. In our program, because of the need to deal with the ethical issues
DAY HOSPITAL TREATMENT OF THE TERMINALLY ILL /
binding the patient and psychiatrist to the internist, surgeon, oncologist, chaplain, psychiatric and medical nurse, and psychiatric and medical social worker, a Day Hospital-based Thanatology Program was started in 1972, in recognition of the need to improve understanding and communication between the various professional groups involved in terminal patient care. The importance of teaching coupled with open lines of communication to avoid ethical, moral or medical binds cannot be overemphasized. In the absence of shared experiences, antagonisms are unavoidable and well-meaning professionals can find themselves at cross-purposes despite their insistence that the patient’s rights and needs are their paramount interest.
Educational and Treatment Program In the author’s experience didactic teaching must be combined with the beneficial sharing of staffs past experience with bereavement and loss. Although didactic teaching about the issues in bereavement and loss provide the framework for understanding the terminally ill patient, the shared feelings about personal losses supply the greatest impetus for the personal emotional growth of staff. Staff sharing of emotional responses permits the development of mutual openness and trust which facilitates therapy with terminally ill patients. On the average two terminally ill patients have participated in the general psychiatric group sessions over a prolonged period of time. These patients have been those referred early in their disease process who had pertinent personal issues to work on besides the issues of death and dying, as, for example, the patient described in Case 1, who had a severe Oedipal problem with his mother and strong feelings about the neglect he had perceived over the years in his relationship with his father. In addition, separate weekly one and a half hour sessions are held in the Day Hospital for group therapy and staff discussion of those terminally ill patients and their families who are unwilling to talk about their feelings in the general psychiatric group. In an average week the number of patients involved in such a group varies from two to five. An important treatment variable at all times is the state of a patient’s health. As a practical matter patients undergoing radiation therapy or chemotherapy are sometimes too physically ill to attend group sessions, a fact which necessitates inpatient visits by staff members until they are able to return to group. Besides the group therapy sessions in the Day Hospital itself, the staff carries an average of fifteen to twenty terminally ill inpatients at all times. In addition to the one hour every other week which is utilized for teaching and administrative sessions in the Day Hospital, a weekly session is conducted on a different inpatient ward each week to increase the knowledge and sensitivity of ward staff personnel. All services involved in patient care attend these teaching exercises.
130 / STANLEY E. SLlVKlN
Liegner’s description of his experiences at St. Christopher’s Hospice in London, an internationally renowned treatment facility directed by Dr. Cicely Saunders, delineates the need for psychiatric participation to assist the staff in working through the constant stress of repeated separations [ 1 1] . Although our work has been carried out in a general hospital as opposed to a hospice geared to the terminally ill, our experience has been remarkably similar to what he has described there. Much of our teaching time is devoted t o psychological support of the staff involved in the care of patients.
Cooperation With Home Care Programs The Day Hospital staff has maintained a friendly spirit of cooperation with community-based professionals t o whom patients may turn for help following discharge from the hospital. We have found it possible to share our insights with the home-based care program of our own hospital, as well as with the Visiting Nurses Association, Welfare Department social workers, and Family Service agencies. In an occasional case where our commitment has been very intense, patients have been visited in the nursing homes to which they have been discharged. In the author’s opinion the linking of medical and surgical terminal inpatient care with a Psychiatric Day Hospital treatment program permits better overall medical and psychiatric planning; a logical extension of this program would be the linkup with community home care programs from the points of view of patient care, psychological support and teachng for families and helpers alike.
Conclusions In the author’s experience Day Hospital treatment can afford a matrix for psychological support of the terminally ill patient by affording continuity of interest and roles as ombudsmen to the staff at the interface areas between psychiatry and the medical or surgical specialties. Hinton has stated that if the physician feels himself in harmony with the patient who is adapting to the progress of his disease, he will find that caring for the dying can be a rewarding experience rather than a confession of failure [ 121 . The author would like to broaden this concept to include all helpers: medical and surgical specialists, psychiatrists, psychologists, social workers, chaplains and nursing personnel, as well as dietitians and housekeeping personnel, who become important in their frequent dialogues with terminally ill patients while performing their duties. Interprofessional relations have been a thorny problem at times. Not only must the psychiatrist increase the awareness of his own staff concerning the ethical and moral issues for the terminally ill patient within the group therapy setting, but he must alert them also to the nuances of relating to other professional personnel. Every effort must be made to cope with the needs of all professionals involved in patient care in order to avoid the types of interpersonal conflict that damage the concept of coordinated professionalism in treatment programs.
DAY HOSPITAL TREATMENT OF THE TERMINALLY ILL /
Permitting the patient to work on bereavement issues with interested helpers frequently diminishes the need for narcotics early in the disease continuum. In the author’s experience psychotherapy and tranquilizers have allowed patients to maintain an interest in alimentation for a longer period of time. He has supported efforts to withhold appetite suppressing narcotics whenever it was feasible. In conclusion, the Day Hospital offers a forum for working out bereavement issues. It provides continuity of therapy with involvement of significant family and staff members whether the patient is in or out of the hospital. The combination of Day Hospital with home-based care offers the greatest potential for acceptance of the inevitability of death. REFERENCES
1. A. D. Weisman, On Dying and Denying, Behavioral Publications, New York, PPS. 28-29, 1972. 2. R. Kastenbaum and R. Aisenherg, The Psychology of Death, Springer Publishing, New York, pps. 207-208, 1972. 3. E. Kubler-Ross, On Death and Dying, Macmillan Publishing, New York, p. 88, 1969. 4. A. Verwoerdt, Communication with the FatallyIll, Charles C. Thomas, Springfield, Illinois, p. 4, 1966. 5. R. Lifton and E. Olson, Living and Dying, Praeger Publishers, New York, p. 28, 1974. 6. B. Schoenberg, Management o f the Dying Patient, in Loss and Grief: Psychological Management in Medical Practices, B. Schoenberg, A. C. Carr, D. Peretz, et al. (eds.), Columbia University Press, New York, p. 273, 1970. 7. H. Rosenthal, Psychotherapy for the Dying, in The Interpretation of Death, H. Ruitenbeek (ed.), Jason Aronson Publishers, New York, pps. 94-95, 1973. 8. V. B. Del Rio, Psychiatric Ethics, in Comprehensive Textbook o f Psychiatry, A. M. Freedman, H. I. Kaplan, B. J. Sadock (eds.), Williams and Wilkins, Baltimore, p. 2544, 1975. 9. F. Redlich and R. F. Mollica, Overview: Ethical Issues in Contemporary Psychiatry, Amer J . Psychiat, 133, pps. 125-136, 1976. 10. C. H. Hardin Branch, et al, The Principles of Medical Ethics with Annotations Especially Applicable t o Psychiatry, Amer. J. Psychiat., 130, pps. 1058-1064, 1973. 11. L. M. Liegner, St. Christopher’s Hospice,JAMA, 234, pps. 1047-1048, 1974. 12. J. Hinton, The Dying and the Doctor, in Man’s Concern with Death, A. Toynbee, A. K. Mant, N. Smart, et al. (eds.), Hodder and Stoughton, London, p. 44,1968. Direct reprint requests to: Stanley E. Slivkin, M. D. Chief, Day Hospital Veterans Administration Hospital 150 South Huntington Avenue Jamaica Plain, Massachusetts 02130