Social Work in Health Care
ISSN: 0098-1389 (Print) 1541-034X (Online) Journal homepage: http://www.tandfonline.com/loi/wshc20
A THEOLOGIAN'S RESPONSE Robert E. Neale & Margaret A. Adams MS To cite this article: Robert E. Neale & Margaret A. Adams MS (1978) A THEOLOGIAN'S RESPONSE, Social Work in Health Care, 4:1, 85-92, DOI: 10.1300/J010v04n01_09 To link to this article: http://dx.doi.org/10.1300/J010v04n01_09
Published online: 12 Dec 2008.
Submit your article to this journal
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View related articles
Full Terms & Conditions of access and use can be found at http://www.tandfonline.com/action/journalInformation?journalCode=wshc20 Download by: [The University Of Melbourne Libraries]
Date: 04 June 2016, At: 22:51
RobertE. Neale
Downloaded by [The University Of Melbourne Libraries] at 22:51 04 June 2016
A THEOLOGIAN'S RESPONSE
The author has a strong concern for the life of the dying patient and for those who relate to him. She also has a useful insight into the power of a label-"dying"-to influence the reactions of those who use it. She believes that the label removes hope and should be abolished. This is a provocative statement that could stimulate much discussion. Four issues come to mind: what is dying, what is hope, what is growth, and what are the patient's rights? There are many other issues, but an outline of these questions can suggest the possible fruitfulness of the author's concern and conclusion. WHAT IS DYING? The current focus on definition of death has not been matched by sufficient concern about definition of dying. From a commonsense perspective, some people never experience dying. They simply drop dead at some point. Others experience the lengthy, lingering form of dying with terminal cancer. And still others do not fit easily under the label. Are those who are experiencing a series of massive heart attacks dying? Are the very old, who are not seriously ill but are losing their capacity to function, dying? I t is not easy to answer. If the label is to be used, we should develop more clarity. The author does try to define the label before she casts it out. On the one hand, she states that a patient is dying if "comatose or totally withdrawn and unable to respond to surrounding environment." This is obscure. A comatose patient can recover both consciousness and health. Is dying to be defined as a reversible state or not? On the other hand, the author defines dying as that which "begins a t the moment that growth ceases." This definition applies the label to the entire span of life (for some parts of the organism cease growth way before adolescence). Such an approach goes against the commonsense understanding of dying as the condition of very rapid increase in deterioration that signals the closeness of death. Time trajectories of patients do vary and professionals may know death is near when lay persons do not, but dying is a recognizable experience. And to be aware that one is near death is quite different from being aware that dying is an aspect of any organism a t all times. Such a definition ignores the human reality of dying. Just imagine a young adult observing to a terminal patient. "I'm dying too." The statement reveals neither communication nor care. Furthermore, these two definitions conflict. I t does not help
86
SOCIAL WORK IN HEALTH CARE
understanding to have dying defined as both lack of consciousness and cessation of growth. But perhaps a good beginning to any discussion requires as many definitions of the subject as can be found. The conflicts between them can generate better understanding of the issues.
Downloaded by [The University Of Melbourne Libraries] at 22:51 04 June 2016
WHAT IS HOPE? The author is concerned about loss of hope due to being labeled as dying. She asserts that the patient must have hope and that they must be treated with hope. This is a crucial concern, but her understanding of hope is not clear. What is the patient to be hopeful about? Must a patient hope for recovery? Regardless of the attitudes of others, the body of the dying patient can signal the fact of oncoming death. Hope for recovery under such circumstances could be quite dysfunctional. Dying patients are often wiser than those who try to care for them. They redefine their hopes in ways that both acknowledge the reality of death and transcend it. A hope for recovery can be changed to many others: hope of less pain; hope of an easy death; hope for another patient's recovery; hope of reconciliation with loved ones; and often hope for very little things-good food, a visit, a gift. Maturity involves the capacity to change one's hopes. Part of the function of the hospital and relatives is to help the patient change her hopes when and if she is so inclined. The fear of the state of dying is associated with many hopes and fears, abandonment being one of the most common in our society. This hope of not being abandoned is a legitimate one that needs to be met as fully as possible. As the author knows, this is not always a realistic hope because of our reactions to the dying. But changing the label will not automatically change our reaction to what is so observable an occasion. What needs to be changed is the quantity and quality of hope in staff and relatives. Dying is a challenge to the patient and all who care for her. To meet it is to grow in love rather than in delusion. WHAT IS GROWTH? Theories of human growth and development abound. I t is useful to see, as the author does, the physical movement of the individual as an arc of ascendence and descendence and the psychological movement as a line of ascendence. Some theorists, Erik Erikson and C. G. Jung among others, are convinced that the last part of life involves coming to terms with dying and death. The "innergrowth" mentioned by the author occurs precisely because one pays attention to and incorpora';es the reality of decline and death into one's life. The dying process is a part of this reality. I t is the material that
Robert E. Neale
87
Downloaded by [The University Of Melbourne Libraries] at 22:51 04 June 2016
prompts one to accept what one has been, is, and will be for whatever moments of life remain. The dying process offers a last chance to come to terms with self, others, and life. This final growth does not necessarily require philosophical jargon or even self-consciousness, but it does require some awareness that death is near. Growth does not occur out of ignorance of dying or in spite of dying, but because of it. Accordingly, the traditional religious disciplines for human development in many cultures focused on the dying experience and incorporated it into understanding of living in a further stage of growth. Rather than ignore dying, one can use it for transformation. WHAT ARE THE PATIENT'S RIGHTS? The author compassionately reminds us that the la. beling of a patient as dying can cause many adverse reactions. She concludes that the dignity of the patient will be supported most by elirninating the label. The suggestion raises questions about the rights of the patient. Patients differ on their approach to their own dying. Some want to know nothing about it and desire to be maintained by the hope of recovery. Other patients want to know the diagnosis and prognosis as precisely a s possible. And there are others who seek to deal with dying by a kind of "mutual pretense." The patient knows that he is dying, the others know, and each knows that the others know, but all have agreed not to mention it or act upon it. Each approach has its advantages and disadvantages. But should any approach be legislated by the staff? This is not done at the remarkable institution for care of the dying-Saint Christopher's Hospice. Rather, the patient determines the approach, &d this is followed by the staff. There may be no mention of one as dying, or there may be a great deal of talk about it. The patient should have this right to decide (although there are circum&ances in which the opinions of staff and family must be taken into account). Simply eliminating the label could lead to denial of the patient's rights. If a patient wants to know everything about her diagnosis and prognosis, to speak only of her "serious illness" and "life threatening situation" without mention of dying could be illegal, paternalistic, and dehumanizing. The dying status is powerful because it can grant new privileges to the patient. These may be minor concessions, such as not having to be bathed so frequently and other deviations from institutional routine. Or, there can be major shifts, such as discontinuation of lifesupport systems. I t is clear that both professionals and lay persons tend to take a different stance on lifeand-death issues when the patient is labeled a s dying. The patient has the right to refuse treatment. We have
88
SOCIAL WORK IN HEALTH CARE
a tendency to grant that right more freely when the patient is dying. And the patient needs sufficient information to make an informed request. There is a danger that eliminating the label could curtail or destroy the patient's right to decide about treatment.
Downloaded by [The University Of Melbourne Libraries] at 22:51 04 June 2016
CONCLUSION These four issues are complex. The questions cannot be answered easily or finally. Discussion will have to be lengthy even in order to put the questions clearly and wisely. But in the meantime, it is reasonable to conclude that elimination of the label might make hospital staff more comfortable and dying patients less so. I t might be better to focus directly on how to make staff more understanding and tolerant of their own discomfort. It is the attempt to ignore the reality of dying that is "counter-life." Robert E. Neale, PhD Program in Psychiatry and Religion Union Theological Seminary 3041 Broadway New York, New York 10027
A SOCIAL WORKER'S RESPONSE
The author accurately notes that caring for dying patients makes us mcomfortab~e,a d advocates that instead we refer to them as '"livig patients with a serious illness." Would this make us, or ow patients, any less uncomfortable? P think not. Calling it something different w ill not make it different and may, in fact, create moue problems, for two reasons. First, it may deprive the patient and his family of the empathic recognition of their reality and its accompanying emotional pain and nced for relief. Second, it may deprive staff of the awareness of our own feelings and the experience of growing
Downloaded by [The University Of Melbourne Libraries] at 22:51 04 June 2016
MargaretA. Adams
89
through them. As uncomfortable as we may be, we must face the situation and develop interventions that will alleviate its stress. As hospit a l social workers, we are in a unique position to help in this, as we look both inward to the institution and its staff, and outward to the patient, family, and community. Our combined knowledge of systems theory, family and personal psychodynamics, and social resources enables us to help the patient, family, and staff. Our focus in this, as in all social work intervention, is on maintaining the sense of competence and mastery, so that the feelings of despair and fear described by the author will be allayed. This brief paper describes the social worker's special contributions to the maintenance of competence, so that the dying patient may attain a sense of resolution about his life, and the family and staff will survive him knowing that they have contributed to this. THE PATIENT As social workers, we are oriented not toward cure, but toward growth, and accept the patient and his human condition, whatever it is. We operate on behalf of the ego, the patient's relation to the real world. We may be the only ones involved who truly are "there" with him, and can tolerate this reality. When the patient is aware of his fatal prognosis, we can work with him to identify attainable goals that will support his sense of competence. The following example was shared with me by a colleague,Judith McKay, MSW: Mrs. D. was a 42-year-old successful professional woman with five children between the ages of 10 and 21; she had been separated from her husband for several years. She used the social worker's contact to share her emotional experience, and also to think out her plans for her family. She taught her children how to balance a checkbook and manage the household account. She insisted that they remain in school, particularly the older two, who were in college. She went over with them the details of her finances and made sure they understood how to handle insurance and Social Security. With her estranged husband, she planned where the children would live after her death so that transitions could be made smoothly. Her impending death was discussed among them, and each child chose certain mementos to keep. The social worker arranged to see the 21-year-old after Mrs. D.'s death to follow up on the family and reaffirm their plans. Mrs. D.'s emotional pain was still present, but was better channeled; she died knowing that she had accomplished important tasks and had left her family a valuable part of herself.
THE FAMILY The patient's family often feels helpless or useless;
. they may manifest this by appearing depressed, by avoiding the patient, or by becoming very controlling and angry with staff. To main-
90
SOCIAL WORK IN HEALTH CARE
Downloaded by [The University Of Melbourne Libraries] at 22:51 04 June 2016
tain the family's sense of competence, we help them assess their priorities, and then structure their involvement with the patient so it is productive. Despite vigorous chemotherapy, 15-year-oldBeth had pro gressive disease. Her mother, Mrs. M., was angry and began to interfere with medical and nursing care. The social worker spoke with her and found that this behavior stemmed from her sadness and desperation and was an attempt to have some control. After talking at length about her own very painful feelings of loss, she said. "I've been trying to keep on hoping, but there just doesn't seem to be a point in it anymore. Maybe I've been hoping for the wrong thing. Instead of hoping for her to live, maybe I should hope that she will die comfortably, that I will be able to help her and the rest of my family, and that we will be able to go on together." This poignant statement represented a crucial point for Mrs. M., and once she saw her priorities so clearly, she was able to outline her goals. First, she wanted to be with Beth emotionally, not just physically, so she planned activities they could share. Beth, a bright and well-informed girl, had many questions about her condition; realizing this, Mrs. M. placed great value on communication and worked on ways she could respond to these questions, and explore the fears that lay behind them. Second, Mrs. M. was aware that her 7-year-old daughter was anxious about Beth's illness and needed her help. She planned special times when she and this child could enjoy being together and also time for them to talk about Beth. A sibling visit was arranged so they could see each other. Third, Mrs. M. realized that she and her husband had experienced some emotional distance because of the illness, and wanted to have him more involved; for the first time, she saw that she needed him. Mrs. M. met with the social worker three times a week to work on these goals, which facilitated her own work of mourning and provided valuable material for their sessions. After Beth's death, follow-up contact found her to be grieving, yet feeling good about herself and beginning to plan for her family's future.
The principles that Mrs. M. discovered are basic to our work in strengthening the family's competence: that they should maintain emotional.contact with the patient, that communication among them should be open, that the functioning of the family unit should be p r e served, and that they should think out clearly how they want to achieve these. Our goal is to help them leave this experience not feeling defeated, but, although sad, feeling that they have done well.
THE STAFF Hospital staff are oriented toward life and its preservation; death is a confrontation of our shortcomings, and elicits strong
Downloaded by [The University Of Melbourne Libraries] at 22:51 04 June 2016
Margaret A. A&ms
91
emotions. We are angry and enraged-at ourselves for failing the patient, at the patient for failing us, or at God for failing all of us. We are sickened by the sights and sounds and smells of a person who, once strong and independent, is now weak, helpless, and debilitated. We are frightened, or even panicked, by the indiscriminate, sudden, and ruthless character of catastrophic illriess. And we are sad, and mourn the person whom we knew, cared for, and respected. These feelings are painful, but significant, and we must experience them in order to understand them and manage them constructively. If we fail to do this, we risk burdening our patients with them through some inappropriate expression. The social worker helps develop staff's feelings of competence through the use of consultation. Although we visit a patient for the express purpose of talking, we also work indirectly by guiding other staff, such as doctors, nurses, or physical therapists, in their interventions. These professionals are "doers" and look for solutions and answers; we can help them learn to be listeners. A frequent concern that comes from these staff members is, "What should I say if he asks me if he's dying? I don't want to lie, but I don't want to scare him. What do I do?" The patient's question represents many other questions, thoughts, and fantasies, and it is not so much a request for an answer, but for a discussion. The staff member might be advised to sit down beside the patient and say, "Sounds like you've got some worries; tell me what you're thinking so I can help." We then remain available to the staff person for ongoing consultation regarding this patient, so that he feels that he is supported and guided in his work, yet not usurped. The social worker also provides support for staff in allowing ventilation of painful feelings, and in maintaining perspective. Recently, at our weekly mental health conference, we were discussing a child who had died and our feelings of frustration. We then looked at ways in which we had all helped the patient and her family: (a)the doctors had prescribed adequate pain relief and had kept the parents informed of all developments: (b) the nurses had given medications when needed, had kept the child clean and comfortable, had made sure the parents were present and awake at the time of death, and had spent time with the child and her parents, just sitting and comforting; and (c)the social worker had supported the parents in their grief, had talked with them about how they would work with their other children, and had made plans for a follow-upcontact. We recognized together that although we were not able to prevent the death from occurring, we were able to make it easier for the patient and her family. This "partializing" made it possible for us to maintain our pride in our work; we felt competent.
SOCIAL WORK IN HEALTH CARE
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CONCLUSION No one can pinpoint the moment at which a person should be considered "dying," and I agree with the author that we should not relate to all chronically ill or aged patients in this way. However, to wait until the patient is "comatose or totally withdrawn and unable to respond to surrounding environment" would be to deprive him, his family, and ourselves of the opportunity to master this painful situation. Death may be sad and frightening for the patient and his family, and our work with them is sometimes grim. However, as social workers, we maintain our goal of strengthening the sense of competence and mastery for patient, family, and staff, and see the situation as material for this work. This will not take away our discomfort, but should help us tolerate it better, and even find gratification in our work. Margaret A. Adams, MS Department of Social Work Memorial Sloan-Kettering Cancer Center 1275 York Avenue New York, New York 10021
ISSN: 0098-1389 (Print) 1541-034X (Online) Journal homepage: http://www.tandfonline.com/loi/wshc20
A THEOLOGIAN'S RESPONSE Robert E. Neale & Margaret A. Adams MS To cite this article: Robert E. Neale & Margaret A. Adams MS (1978) A THEOLOGIAN'S RESPONSE, Social Work in Health Care, 4:1, 85-92, DOI: 10.1300/J010v04n01_09 To link to this article: http://dx.doi.org/10.1300/J010v04n01_09
Published online: 12 Dec 2008.
Submit your article to this journal
Article views: 3
View related articles
Full Terms & Conditions of access and use can be found at http://www.tandfonline.com/action/journalInformation?journalCode=wshc20 Download by: [The University Of Melbourne Libraries]
Date: 04 June 2016, At: 22:51
RobertE. Neale
Downloaded by [The University Of Melbourne Libraries] at 22:51 04 June 2016
A THEOLOGIAN'S RESPONSE
The author has a strong concern for the life of the dying patient and for those who relate to him. She also has a useful insight into the power of a label-"dying"-to influence the reactions of those who use it. She believes that the label removes hope and should be abolished. This is a provocative statement that could stimulate much discussion. Four issues come to mind: what is dying, what is hope, what is growth, and what are the patient's rights? There are many other issues, but an outline of these questions can suggest the possible fruitfulness of the author's concern and conclusion. WHAT IS DYING? The current focus on definition of death has not been matched by sufficient concern about definition of dying. From a commonsense perspective, some people never experience dying. They simply drop dead at some point. Others experience the lengthy, lingering form of dying with terminal cancer. And still others do not fit easily under the label. Are those who are experiencing a series of massive heart attacks dying? Are the very old, who are not seriously ill but are losing their capacity to function, dying? I t is not easy to answer. If the label is to be used, we should develop more clarity. The author does try to define the label before she casts it out. On the one hand, she states that a patient is dying if "comatose or totally withdrawn and unable to respond to surrounding environment." This is obscure. A comatose patient can recover both consciousness and health. Is dying to be defined as a reversible state or not? On the other hand, the author defines dying as that which "begins a t the moment that growth ceases." This definition applies the label to the entire span of life (for some parts of the organism cease growth way before adolescence). Such an approach goes against the commonsense understanding of dying as the condition of very rapid increase in deterioration that signals the closeness of death. Time trajectories of patients do vary and professionals may know death is near when lay persons do not, but dying is a recognizable experience. And to be aware that one is near death is quite different from being aware that dying is an aspect of any organism a t all times. Such a definition ignores the human reality of dying. Just imagine a young adult observing to a terminal patient. "I'm dying too." The statement reveals neither communication nor care. Furthermore, these two definitions conflict. I t does not help
86
SOCIAL WORK IN HEALTH CARE
understanding to have dying defined as both lack of consciousness and cessation of growth. But perhaps a good beginning to any discussion requires as many definitions of the subject as can be found. The conflicts between them can generate better understanding of the issues.
Downloaded by [The University Of Melbourne Libraries] at 22:51 04 June 2016
WHAT IS HOPE? The author is concerned about loss of hope due to being labeled as dying. She asserts that the patient must have hope and that they must be treated with hope. This is a crucial concern, but her understanding of hope is not clear. What is the patient to be hopeful about? Must a patient hope for recovery? Regardless of the attitudes of others, the body of the dying patient can signal the fact of oncoming death. Hope for recovery under such circumstances could be quite dysfunctional. Dying patients are often wiser than those who try to care for them. They redefine their hopes in ways that both acknowledge the reality of death and transcend it. A hope for recovery can be changed to many others: hope of less pain; hope of an easy death; hope for another patient's recovery; hope of reconciliation with loved ones; and often hope for very little things-good food, a visit, a gift. Maturity involves the capacity to change one's hopes. Part of the function of the hospital and relatives is to help the patient change her hopes when and if she is so inclined. The fear of the state of dying is associated with many hopes and fears, abandonment being one of the most common in our society. This hope of not being abandoned is a legitimate one that needs to be met as fully as possible. As the author knows, this is not always a realistic hope because of our reactions to the dying. But changing the label will not automatically change our reaction to what is so observable an occasion. What needs to be changed is the quantity and quality of hope in staff and relatives. Dying is a challenge to the patient and all who care for her. To meet it is to grow in love rather than in delusion. WHAT IS GROWTH? Theories of human growth and development abound. I t is useful to see, as the author does, the physical movement of the individual as an arc of ascendence and descendence and the psychological movement as a line of ascendence. Some theorists, Erik Erikson and C. G. Jung among others, are convinced that the last part of life involves coming to terms with dying and death. The "innergrowth" mentioned by the author occurs precisely because one pays attention to and incorpora';es the reality of decline and death into one's life. The dying process is a part of this reality. I t is the material that
Robert E. Neale
87
Downloaded by [The University Of Melbourne Libraries] at 22:51 04 June 2016
prompts one to accept what one has been, is, and will be for whatever moments of life remain. The dying process offers a last chance to come to terms with self, others, and life. This final growth does not necessarily require philosophical jargon or even self-consciousness, but it does require some awareness that death is near. Growth does not occur out of ignorance of dying or in spite of dying, but because of it. Accordingly, the traditional religious disciplines for human development in many cultures focused on the dying experience and incorporated it into understanding of living in a further stage of growth. Rather than ignore dying, one can use it for transformation. WHAT ARE THE PATIENT'S RIGHTS? The author compassionately reminds us that the la. beling of a patient as dying can cause many adverse reactions. She concludes that the dignity of the patient will be supported most by elirninating the label. The suggestion raises questions about the rights of the patient. Patients differ on their approach to their own dying. Some want to know nothing about it and desire to be maintained by the hope of recovery. Other patients want to know the diagnosis and prognosis as precisely a s possible. And there are others who seek to deal with dying by a kind of "mutual pretense." The patient knows that he is dying, the others know, and each knows that the others know, but all have agreed not to mention it or act upon it. Each approach has its advantages and disadvantages. But should any approach be legislated by the staff? This is not done at the remarkable institution for care of the dying-Saint Christopher's Hospice. Rather, the patient determines the approach, &d this is followed by the staff. There may be no mention of one as dying, or there may be a great deal of talk about it. The patient should have this right to decide (although there are circum&ances in which the opinions of staff and family must be taken into account). Simply eliminating the label could lead to denial of the patient's rights. If a patient wants to know everything about her diagnosis and prognosis, to speak only of her "serious illness" and "life threatening situation" without mention of dying could be illegal, paternalistic, and dehumanizing. The dying status is powerful because it can grant new privileges to the patient. These may be minor concessions, such as not having to be bathed so frequently and other deviations from institutional routine. Or, there can be major shifts, such as discontinuation of lifesupport systems. I t is clear that both professionals and lay persons tend to take a different stance on lifeand-death issues when the patient is labeled a s dying. The patient has the right to refuse treatment. We have
88
SOCIAL WORK IN HEALTH CARE
a tendency to grant that right more freely when the patient is dying. And the patient needs sufficient information to make an informed request. There is a danger that eliminating the label could curtail or destroy the patient's right to decide about treatment.
Downloaded by [The University Of Melbourne Libraries] at 22:51 04 June 2016
CONCLUSION These four issues are complex. The questions cannot be answered easily or finally. Discussion will have to be lengthy even in order to put the questions clearly and wisely. But in the meantime, it is reasonable to conclude that elimination of the label might make hospital staff more comfortable and dying patients less so. I t might be better to focus directly on how to make staff more understanding and tolerant of their own discomfort. It is the attempt to ignore the reality of dying that is "counter-life." Robert E. Neale, PhD Program in Psychiatry and Religion Union Theological Seminary 3041 Broadway New York, New York 10027
A SOCIAL WORKER'S RESPONSE
The author accurately notes that caring for dying patients makes us mcomfortab~e,a d advocates that instead we refer to them as '"livig patients with a serious illness." Would this make us, or ow patients, any less uncomfortable? P think not. Calling it something different w ill not make it different and may, in fact, create moue problems, for two reasons. First, it may deprive the patient and his family of the empathic recognition of their reality and its accompanying emotional pain and nced for relief. Second, it may deprive staff of the awareness of our own feelings and the experience of growing
Downloaded by [The University Of Melbourne Libraries] at 22:51 04 June 2016
MargaretA. Adams
89
through them. As uncomfortable as we may be, we must face the situation and develop interventions that will alleviate its stress. As hospit a l social workers, we are in a unique position to help in this, as we look both inward to the institution and its staff, and outward to the patient, family, and community. Our combined knowledge of systems theory, family and personal psychodynamics, and social resources enables us to help the patient, family, and staff. Our focus in this, as in all social work intervention, is on maintaining the sense of competence and mastery, so that the feelings of despair and fear described by the author will be allayed. This brief paper describes the social worker's special contributions to the maintenance of competence, so that the dying patient may attain a sense of resolution about his life, and the family and staff will survive him knowing that they have contributed to this. THE PATIENT As social workers, we are oriented not toward cure, but toward growth, and accept the patient and his human condition, whatever it is. We operate on behalf of the ego, the patient's relation to the real world. We may be the only ones involved who truly are "there" with him, and can tolerate this reality. When the patient is aware of his fatal prognosis, we can work with him to identify attainable goals that will support his sense of competence. The following example was shared with me by a colleague,Judith McKay, MSW: Mrs. D. was a 42-year-old successful professional woman with five children between the ages of 10 and 21; she had been separated from her husband for several years. She used the social worker's contact to share her emotional experience, and also to think out her plans for her family. She taught her children how to balance a checkbook and manage the household account. She insisted that they remain in school, particularly the older two, who were in college. She went over with them the details of her finances and made sure they understood how to handle insurance and Social Security. With her estranged husband, she planned where the children would live after her death so that transitions could be made smoothly. Her impending death was discussed among them, and each child chose certain mementos to keep. The social worker arranged to see the 21-year-old after Mrs. D.'s death to follow up on the family and reaffirm their plans. Mrs. D.'s emotional pain was still present, but was better channeled; she died knowing that she had accomplished important tasks and had left her family a valuable part of herself.
THE FAMILY The patient's family often feels helpless or useless;
. they may manifest this by appearing depressed, by avoiding the patient, or by becoming very controlling and angry with staff. To main-
90
SOCIAL WORK IN HEALTH CARE
Downloaded by [The University Of Melbourne Libraries] at 22:51 04 June 2016
tain the family's sense of competence, we help them assess their priorities, and then structure their involvement with the patient so it is productive. Despite vigorous chemotherapy, 15-year-oldBeth had pro gressive disease. Her mother, Mrs. M., was angry and began to interfere with medical and nursing care. The social worker spoke with her and found that this behavior stemmed from her sadness and desperation and was an attempt to have some control. After talking at length about her own very painful feelings of loss, she said. "I've been trying to keep on hoping, but there just doesn't seem to be a point in it anymore. Maybe I've been hoping for the wrong thing. Instead of hoping for her to live, maybe I should hope that she will die comfortably, that I will be able to help her and the rest of my family, and that we will be able to go on together." This poignant statement represented a crucial point for Mrs. M., and once she saw her priorities so clearly, she was able to outline her goals. First, she wanted to be with Beth emotionally, not just physically, so she planned activities they could share. Beth, a bright and well-informed girl, had many questions about her condition; realizing this, Mrs. M. placed great value on communication and worked on ways she could respond to these questions, and explore the fears that lay behind them. Second, Mrs. M. was aware that her 7-year-old daughter was anxious about Beth's illness and needed her help. She planned special times when she and this child could enjoy being together and also time for them to talk about Beth. A sibling visit was arranged so they could see each other. Third, Mrs. M. realized that she and her husband had experienced some emotional distance because of the illness, and wanted to have him more involved; for the first time, she saw that she needed him. Mrs. M. met with the social worker three times a week to work on these goals, which facilitated her own work of mourning and provided valuable material for their sessions. After Beth's death, follow-up contact found her to be grieving, yet feeling good about herself and beginning to plan for her family's future.
The principles that Mrs. M. discovered are basic to our work in strengthening the family's competence: that they should maintain emotional.contact with the patient, that communication among them should be open, that the functioning of the family unit should be p r e served, and that they should think out clearly how they want to achieve these. Our goal is to help them leave this experience not feeling defeated, but, although sad, feeling that they have done well.
THE STAFF Hospital staff are oriented toward life and its preservation; death is a confrontation of our shortcomings, and elicits strong
Downloaded by [The University Of Melbourne Libraries] at 22:51 04 June 2016
Margaret A. A&ms
91
emotions. We are angry and enraged-at ourselves for failing the patient, at the patient for failing us, or at God for failing all of us. We are sickened by the sights and sounds and smells of a person who, once strong and independent, is now weak, helpless, and debilitated. We are frightened, or even panicked, by the indiscriminate, sudden, and ruthless character of catastrophic illriess. And we are sad, and mourn the person whom we knew, cared for, and respected. These feelings are painful, but significant, and we must experience them in order to understand them and manage them constructively. If we fail to do this, we risk burdening our patients with them through some inappropriate expression. The social worker helps develop staff's feelings of competence through the use of consultation. Although we visit a patient for the express purpose of talking, we also work indirectly by guiding other staff, such as doctors, nurses, or physical therapists, in their interventions. These professionals are "doers" and look for solutions and answers; we can help them learn to be listeners. A frequent concern that comes from these staff members is, "What should I say if he asks me if he's dying? I don't want to lie, but I don't want to scare him. What do I do?" The patient's question represents many other questions, thoughts, and fantasies, and it is not so much a request for an answer, but for a discussion. The staff member might be advised to sit down beside the patient and say, "Sounds like you've got some worries; tell me what you're thinking so I can help." We then remain available to the staff person for ongoing consultation regarding this patient, so that he feels that he is supported and guided in his work, yet not usurped. The social worker also provides support for staff in allowing ventilation of painful feelings, and in maintaining perspective. Recently, at our weekly mental health conference, we were discussing a child who had died and our feelings of frustration. We then looked at ways in which we had all helped the patient and her family: (a)the doctors had prescribed adequate pain relief and had kept the parents informed of all developments: (b) the nurses had given medications when needed, had kept the child clean and comfortable, had made sure the parents were present and awake at the time of death, and had spent time with the child and her parents, just sitting and comforting; and (c)the social worker had supported the parents in their grief, had talked with them about how they would work with their other children, and had made plans for a follow-upcontact. We recognized together that although we were not able to prevent the death from occurring, we were able to make it easier for the patient and her family. This "partializing" made it possible for us to maintain our pride in our work; we felt competent.
SOCIAL WORK IN HEALTH CARE
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CONCLUSION No one can pinpoint the moment at which a person should be considered "dying," and I agree with the author that we should not relate to all chronically ill or aged patients in this way. However, to wait until the patient is "comatose or totally withdrawn and unable to respond to surrounding environment" would be to deprive him, his family, and ourselves of the opportunity to master this painful situation. Death may be sad and frightening for the patient and his family, and our work with them is sometimes grim. However, as social workers, we maintain our goal of strengthening the sense of competence and mastery for patient, family, and staff, and see the situation as material for this work. This will not take away our discomfort, but should help us tolerate it better, and even find gratification in our work. Margaret A. Adams, MS Department of Social Work Memorial Sloan-Kettering Cancer Center 1275 York Avenue New York, New York 10021
