Clinical review
Psychological care of neuro-oncology patients and their families Ros Gardner, Royal Marsden Hospital, Sutton This article examines the psychological needs of neuro-oncology patients and their families and presents two case histories which illustrate the way in which patients and their families can be brought to terms with their situations through skilled nursing intervention.
n my role as Lecturer Practitioner in Psychological Care at the Royal Marsden Hospital in Sutton, I divide my time be tween providing a clinical service to pa tients with cancer and their families and teaching communication skills and mental health practices to nurses. I also participate in a number of weekly multidisciplinary meetings, one of which is the neuro-oncol ogy team meeting. The progress of each person seen that week, either as an inpatient or outpatient, is reviewed and problems are identified. Patients are viewed in their social context and the stage they have reached in their illness, i.e. diagnosis, treatment, sideeffects, residual disability, remission or re lapse. Although one could argue that all cancer patients need to be seen in their social context at all times, I believe that pa tients with a primary brain tumour or me tastasis and their families have different needs. These meetings arc used by the members of the multidisciplinary team not only to feed back and share information, but also to receive support and discuss painful clini cal decisions that may be impending.
empathetic and trusting relationship. I work in a collaborative fashion using com ponents of adjuvant psychological therapy (Moorey and Greer, 1989) to enable famil ies to see where it is possible to regain con trol of their lives. Where there is a need for expression of grief and anger, I provide a confidential and safe space. Primary category Jane was a nurse, single and in her 20s. One day she collapsed while on duty and on in vestigation was found to have a large grade 3 frontal astrocytoma which has a progno sis of about 2 years. This was treated by partial resection and radiotherapy. It was during her radiotherapy that we first met on the ward. She appeared withdrawn, her mood was flat and she was suffering from tinnitus, blurred vision, headache and a left sided weakness. She was unable to look after herself and had moved back to her parent’s home. Her 11-year-old sister had not been told of Jane’s diagnosis. When I became involved, Jane was intensely angry, her parents were very anxious, and her sis ter had become withdrawn and was having problems at school.
Categories
Ms Ros Gardner is a Lecturer Practitioner in Psychological Care at the Royal Marsden Hospital, Sutton, Surrey
Neuro-oncology patients tend to fall into two categories: those with primary tu mours and those with brain metastasis. Pa tients with primary tumours are generally aged between 20 and 50 years. They are a small group who comprise 2.5% of all tu mour patients; of these, 80% have brain tu mours and 20% have tumours elsewhere in the central nervous system (Kinash, 1987). Patients with brain mestastasis usually have a breast or lung primary lesion and often will have known of their disease for some time. To illustrate the differences in the two groups 1 will describe two case histories of patients. I begin by using a Rogerian (Rogers, 1951) person-centred approach to bear the person’s experience and build up an
British Journal of Nursing. 1992, Vol 1, No 11
Metastasis category John was a policeman, in his 50s and marr ied with two grown-up children who lived away from home. He and his wife were relearning how to enjoy their busy, active social life together without the children, when he developed an irritating persistent cough. He was diagnosed as having lung cancer. He had received the diagnosis and treatment 1 year ago and they had been making plans to travel during his future early retirement. However, he suddenly de veloped problems with his balance and a solitary brain metastasis was diagnosed. This was treated with a craniotomy and radiotherapy, aiming for a useful remission and a reduction in symptoms. John was referred to me for help with
553
Downloaded from magonlinelibrary.com by 130.237.122.245 on January 18, 2019.
Psychological care of neuro-oncology patients and their families
(The major difference with neuro-oncology patients is that they are struggling to relate to their environment because of their increasing disability.. . whether physical, visual, speech deficit, personality change or cognitive impairment. ’
his anxiety. His wife, Mary, insisted that they were seen separately and marched into my office first, leaving John in the waiting room. She was angry and resentful at hav ing to give up their life together and her own independence. She felt trapped, house bound and overwhelmed with guilt. John came into my office with an un steady gait. He held onto the chair then burst into tears and described his feelings of isolation and how he had become partial ly deaf and thus felt excluded from his fam ily and friend’s conversation. He had noted that his friends seemed awkward in his presence (Leiber et al, 1976). Since his craniotomy he and his wife had slept sepa rately as he could not tolerate any move ment or vibration to his head. He had lost all his hair which was a constant reminder that he was different from other people. John had been a smoker and had received unsympathetic comments from his GP who implied that he had brought the cancer upon himself. This had caused him to feel alienated from staff. But most of all, he could not bear the uncertainty of his condi tion and the loss of his independence. Both families related painful and distress ing stories. In order that 1 may work use fully in this environment, it is essential to have casework supervision. This, together with my own self-awareness, enables me to understand the feelings I am experiencing, so that 1 may remain focused on the pa tient’s emotions and not mine.
Differences anti stages The major difference with neuro-oncology patients is that they are struggling to relate to their environment because of their in creasing disability (Noel et al, 1986; Shapiro and Kornfield, 1987; Villejo and Meyers, 1991), whether physical, visual, speech deficit, personality change or cogni tive impairment. This is intrinsic to how much that person feels in charge of his/her life, as a decrease in abilities disempowers that person. Any of these symptoms can impair the patient’s ability to understand, remember, use patient education resources or maintain social judgment. Family members suffer two major shocks: the assault of the illness on the pa tient’s lifespan and the fear that these gross changes bring about. Jane’s parents mourned the loss of their bright, vivacious daughter while being bombarded with anger by this lookalike stranger who, due to steroids and partial alopecia, was becom ing increasingly unrecognizable. John fear
554
ed that he would lose his mental faculties, become a vegetable and a burden on his wife. He could not see the point of going on. In view of this overriding fear, it is not surprising that in two Thames regions, only 21% of patients with a brain tumour die at home, compared with 30% of patients with all other cancers (Wheildan and McKeran, 1990). The fear of the unknown and the nature of the disabilities become unmanageable. The stages that families pass through are as follows. Shock or acute phase This stage begins at diagnosis (Rait and Lederberg, 1989) and is perceived by the patient as a threat to his/her life and by family members as a fear of losing their lov ed one. It may be followed by numbness, disbelief or denial (Heinrich and Schag, 1984). Such feelings often occur in hospital when the person becomes a patient and sur renders his/her life up to professionals. The family often tries to cope by seeking information and protecting the patient from the worst, or individually remembering dif ferent sets of facts, blurred by the anxiety of waiting for a diagnosis; communication can therefore become fraught (Ram, 1992). Most families say that trying to cope with this uncertainty is one of the worst times because they no longer feel they have any control over their lives. Research shows that between 25% and 50% of patients receiving inpatient treat ment for cancer suffer from an anxiety or depressive disorder at some time (Hughes, 1987). As time goes on, some of these con flicts and communication difficulties may be resolved, but equally they may increase. Chronic phase Treatment, hospitalization and the period of remission may fall into the chronic phase. This stage can produce confounding variables in the patient’s psychological state, e.g. an acute confusional state (Welch-McCaffrey and Dodge, 1988), loss of appetite, weight loss, fatigue, agitation, or withdrawal (Loescher ct al, 1989). Fam ily members may show signs of stress while trying to balance each other’s needs. Jane’s mother felt she was becoming de pressed through trying to care for her two daughters and maintaining her part-time job. Jane’s father felt he was coping by de taching himself emotionally from the fam ily and by keeping himself busy at work
Downloaded from magonlinelibrary.com by 130.237.122.245 on January 18, 2019. British Journal of Nursing, 1992, Vol I, No 11
t
Psychological care of neuro-oncology patients and their families
‘ In the presence of anxiety and urgency, people who are distressed or ill process information in an atypical manner, and their normal way of listening, remembering, forgetting and responding alters. 9
and at home. Jane’s sister stopped being withdrawn when she was included in the sharing of information. Resolution phase The resolution phase covers the experience of bereavement and adaptation or recovery from the death of the patient. Each stage of grief has recognizable characteristics (Parkes, 1986) although this process will vary in duration and form, according to the family’s experience and the life expectancy of the patient, i.e. whether old or young.
(
Nursing interventions $
What interventions are effective when working with these families and what are nurses’ responsibilities? Before attempting to answer these questions, it is necessary to define anxiety and depression. Anxiety is the response of an organism to a threat, real or imagined. A distinction can be made between acute anxiety, which generally occurs in response to a real threat, and chronic anxiety, which is more related to imagined threats. Depression consists of a numbr of syn dromes. The central features are low mood, pessimistic thinking, lack of enjoyment, re duced energy and slowness. Depression has degrees of severity, ranging from sadness, through flatness of affect or feeling, to sui cide and psychosis, which is characterized by delusions and hallucinations (Gclder and Mayou, 1989). In this setting there is no clear-cut dis tinction between normality and psychiatric illness (Moorey and Greer, 1989). Psycho logical care is the responsibility of every member of the multidisciplinary team and has four basic components (Nichols, 1984). Emotional care As nurses we should develop our own selfawareness so that we do not just tolerate the family’s distress but are empowered to take it on. What are our attitudes to emo tion? Where are our strengths and weak nesses? Do we know what our resources are? It is essential to relate in a manner that communicates permission, acceptance and safety. This will enable the family not to feel the need to suppress emotion or feel ashamed or feel that they are being awk ward. Emotional care involves talking and listening without ignoring or compulsively intervening (Wooley et al, 1991). John and his wife needed acceptance of their feelings before they were able to move on. John began to stop denying his condi British Journal of Nursing, 1992, Vol I, No 11
tion which meant that he became more aware of his current life circumstances. Jane needed her anger held until she was able to face the fact that she had changed from being a nurse to being a patient. Informational care In the presence of anxiety and urgency, people who are distressed or ill process in formation in an atypical manner and their normal way of listening, remembering, for getting and responding alters. The nurse must therefore check repeatedly for feed back and remember to supply more infor mation. Jane’s parents arranged repeated visits to the consultant to try to understand the prognosis and make sense of the fact their daughter was going to die. Jane herself knew very little about brain tumours but the nursing staff assumed that she did, which stuck her in a false reality that she was going to recover. It was felt that she was denying it, but she was not — she was just too afraid to ask. The family were working on different parameters and this aggravated communication difficulties. Basic counselling skills These are fundamental to good communi cation and include listening carefully with full attention, reflection, empathy and fo cusing. Communication does not involve solving other people’s problems, being helpful/taking over, or giving false reassur ance. It is about knowing when to set limits and recognizing when specialist interven tion is needed. Counselling is a process through which one person helps another by purposeful conversation in an understanding atmos phere. It seeks to establish a helping rela tionship in which people being counselled can express their thoughts and feelings in such a way as to clarify their own situation, come to terms with new experiences, see their difficulties more objectively, and so face their problems with less anxiety and tension. Its basic purpose is to assist indi viduals to make their own decisions from the choices that are available (Nurse, 1980). Monitoring and referring on This stage can be an arbitrary or collabor ative decision. It usually occurs when the person becomes frankly disturbed, e.g. mute and withdrawn or develops a steroidinduced psychosis, or when professionals recognize their own limits, as with John. He was referred to me because he needed help with managing his anxiety and one
555
Downloaded from magonlinelibrary.com by 130.237.122.245 on January 18, 2019.
Psychological care of neuro-oncology patients and their families
iPoor comm unica tion causes more suffering than any other problem except unrelieved pain . . . Good comm unica tion markedly improves the quality of life of all family members . . . by reducing levels of anxiety and depression. 9
professional sensed that it was being exacer bated by the difficulties in his marriage. Jane’s referral was from a nurse who had wanted to facilitate as much help as possible for a fellow colleague, but who felt unable to cope with Jane’s anger and had seen the potential hazards for the family because of their split communication. Poor communication causes more suffer ing than any other problem except unre lieved pain (Stedeford, 1981). Good com munication markedly improves the quality of life of all family members (Linn et al, 1982) by reducing levels of anxiety and de pression. Other specialist services that are effective are skilled counselling for problem solving and cognitive and behavioural ther apy (Heinrich and Coscarelli, 1984; Green et al, 1992). Support groups can help pa tients and their families to realize that their reactions to the illnesses are normal (Amato, 1991).
Conclusion 1 would like to end with a quotation from a family therapist who had a brain tumour and struggled within the system until she found this resolution: ‘R ather surprisingly I found th at the prospect of death itself did not concern or upset me nearly as m uch as the u n known and terrifying thought of dying. Horrific images flashed across my mind of living as a vegetable, incoherent and a burden to everyone. Pulling the plug and when to do it became an obsession. I felt I had the issue somewhat resolved
KEY POINTS •
Patients are viewed by the multidisciplinary team in their social context and which stage they are at in their journey through their illness.
•
Patients with a primary brain tumour or metastasis will have different experiences from those with tumours outside the central nervous system.
•
Neuro-oncology patients are faced with losing control of their ability to relate to the environment.
•
Family members are faced with the fear that these changes bring about.
•
The experience of coping with cancer produces an emotional reaction in patients and their families. There is no clear-cut distinction between normality and psychiatric illness in this setting.
•
Psychological care involves every member of the multidisciplinary team facilitating good communication skills.
556
when I had established to my satisfac tion th at those closest to me would use their own best judgm ent as to which stage they would w ant to go on living themselves and apply th at same decision to me’ (Morawetz, 1988).
Without psychological care and good com munication within the family and with hos pital staff, the patient would have had a vastly different and more fearful quality of life. j^ T
Amato CA (1991) Malignant glioma: coping with a devastating illness./ Neurosci Nurs 23(1): 20-2 Gelder M, Mayou R (1989) Oxford Textbook o f Psy chiatry 2nd edn. Oxford University Press Greer S, Moorey S, Baruch J et al (1992) Adjuvant psychological therapy for patients with cancer: a ective randomised trial. Br Med] 304: 675-80 RL, Coscarclli C (1984) A behavioural medi cine approach to coping with cancer: a case report. Cancer Nurs June: 242-47 Heinrich R, Schag CC (1984) Living with cancer: the cancer inventory of problem situations. J Clin Psychol 40: 972-80 Hughes J (1987) Psychological and social conse quences of cancer. Cancer Surveys 6(3): 455-75 Kinash RG (1987) Malignant brain tumour: therapies and nursing interventions. Axon 9(1): 7-11 Leiber L, Plumb MM, Gestenzang NL, Holland J (1976) The communication of affection between cancer patients and their spouses. Psychosomatic Medicine 38(6): 379-89 Linn MW, Linn BS, Harris R (1982) Effects of coun selling for late stage cancer patients. Cancer 49: 1048-55 Loescher LJ, Welch-McCaffrey D, Leigh SA, Hoffman B (1989) Surviving adult cancers, part 1: physiologic effects. Ann Intern Med 111: 411-32 Moorey S, Greer S (1989) Psychological Therapy for Patients with Cancer. Heinemann Medical Books, London Morawetz A (1988) Speaking personally. Fam System Med 6(3): 349-60 Nichols KA (1984) Psychological Care in Physical Ill ness. Groom Helm, Kent Noel R, Rao N, Sulton L, Young CL, Harvey RF (1986) Rehabilitation team and family assessment of the initial home pass. Arch Phys Med Rehab 67: 759-61 Nurse G (1980) Counselling and the Nurse. HM and M Publishers Parkes MC (1986) Bereavement. Studies o f Grief in Adult Life. Penguin Books, Harmondsworth Rait D, Lederberg M (1989) The family of the cancer patient. In: Holland JC, Rowland J, eds. Hand book o f Psycho-oncology. Oxford University Press, New York: 585 Ram A (1992) Communication breakdown. Health Sew J 12 March: 24-5 Rogers C (1951) Client Centred Therapy. Houghton Mifflin, Boston Shapiro PA, Kornfield DS (1987) Psychiatric aspects of head and neck cancer surgery. Psychiatr Clin North Am 10(1): 87-100 Stedeford A (1981) Couples facing death 11 — unsatis factory communication. Br Med I 283: 1098-101 Villejo L, Meyers C (1991) Brain function, learning styles, and cancer patient education. Semin Oncol Nurs 7(2): 97-104 Welch-McCaffrey D, Dodge J (1988) Acute confusional states in elderly cancer patients. Semin Oncol Nurs 4(3): 208-16 Wheildan M, McKeran R (1990) The terminal care of brain tumour patients. In: Thomas DG, ed. Neuro oncology Primary Malignant Brain Tumours. John Hopkins University Press, Baltimore: 283-91 Wooley H, Stein A, Forrest GC, Bawn ID (1991) Cor nerstone care for families of children with life threatening illness. Dev Med Child Neurol (Suppl) 33: 216-24
S
Downloaded from magonlinelibrary.com by 130.237.122.245 on January 18, 2019. British Journal of Nursing, 1992, Vol I,No 11
Psychological care of neuro-oncology patients and their families Ros Gardner, Royal Marsden Hospital, Sutton This article examines the psychological needs of neuro-oncology patients and their families and presents two case histories which illustrate the way in which patients and their families can be brought to terms with their situations through skilled nursing intervention.
n my role as Lecturer Practitioner in Psychological Care at the Royal Marsden Hospital in Sutton, I divide my time be tween providing a clinical service to pa tients with cancer and their families and teaching communication skills and mental health practices to nurses. I also participate in a number of weekly multidisciplinary meetings, one of which is the neuro-oncol ogy team meeting. The progress of each person seen that week, either as an inpatient or outpatient, is reviewed and problems are identified. Patients are viewed in their social context and the stage they have reached in their illness, i.e. diagnosis, treatment, sideeffects, residual disability, remission or re lapse. Although one could argue that all cancer patients need to be seen in their social context at all times, I believe that pa tients with a primary brain tumour or me tastasis and their families have different needs. These meetings arc used by the members of the multidisciplinary team not only to feed back and share information, but also to receive support and discuss painful clini cal decisions that may be impending.
empathetic and trusting relationship. I work in a collaborative fashion using com ponents of adjuvant psychological therapy (Moorey and Greer, 1989) to enable famil ies to see where it is possible to regain con trol of their lives. Where there is a need for expression of grief and anger, I provide a confidential and safe space. Primary category Jane was a nurse, single and in her 20s. One day she collapsed while on duty and on in vestigation was found to have a large grade 3 frontal astrocytoma which has a progno sis of about 2 years. This was treated by partial resection and radiotherapy. It was during her radiotherapy that we first met on the ward. She appeared withdrawn, her mood was flat and she was suffering from tinnitus, blurred vision, headache and a left sided weakness. She was unable to look after herself and had moved back to her parent’s home. Her 11-year-old sister had not been told of Jane’s diagnosis. When I became involved, Jane was intensely angry, her parents were very anxious, and her sis ter had become withdrawn and was having problems at school.
Categories
Ms Ros Gardner is a Lecturer Practitioner in Psychological Care at the Royal Marsden Hospital, Sutton, Surrey
Neuro-oncology patients tend to fall into two categories: those with primary tu mours and those with brain metastasis. Pa tients with primary tumours are generally aged between 20 and 50 years. They are a small group who comprise 2.5% of all tu mour patients; of these, 80% have brain tu mours and 20% have tumours elsewhere in the central nervous system (Kinash, 1987). Patients with brain mestastasis usually have a breast or lung primary lesion and often will have known of their disease for some time. To illustrate the differences in the two groups 1 will describe two case histories of patients. I begin by using a Rogerian (Rogers, 1951) person-centred approach to bear the person’s experience and build up an
British Journal of Nursing. 1992, Vol 1, No 11
Metastasis category John was a policeman, in his 50s and marr ied with two grown-up children who lived away from home. He and his wife were relearning how to enjoy their busy, active social life together without the children, when he developed an irritating persistent cough. He was diagnosed as having lung cancer. He had received the diagnosis and treatment 1 year ago and they had been making plans to travel during his future early retirement. However, he suddenly de veloped problems with his balance and a solitary brain metastasis was diagnosed. This was treated with a craniotomy and radiotherapy, aiming for a useful remission and a reduction in symptoms. John was referred to me for help with
553
Downloaded from magonlinelibrary.com by 130.237.122.245 on January 18, 2019.
Psychological care of neuro-oncology patients and their families
(The major difference with neuro-oncology patients is that they are struggling to relate to their environment because of their increasing disability.. . whether physical, visual, speech deficit, personality change or cognitive impairment. ’
his anxiety. His wife, Mary, insisted that they were seen separately and marched into my office first, leaving John in the waiting room. She was angry and resentful at hav ing to give up their life together and her own independence. She felt trapped, house bound and overwhelmed with guilt. John came into my office with an un steady gait. He held onto the chair then burst into tears and described his feelings of isolation and how he had become partial ly deaf and thus felt excluded from his fam ily and friend’s conversation. He had noted that his friends seemed awkward in his presence (Leiber et al, 1976). Since his craniotomy he and his wife had slept sepa rately as he could not tolerate any move ment or vibration to his head. He had lost all his hair which was a constant reminder that he was different from other people. John had been a smoker and had received unsympathetic comments from his GP who implied that he had brought the cancer upon himself. This had caused him to feel alienated from staff. But most of all, he could not bear the uncertainty of his condi tion and the loss of his independence. Both families related painful and distress ing stories. In order that 1 may work use fully in this environment, it is essential to have casework supervision. This, together with my own self-awareness, enables me to understand the feelings I am experiencing, so that 1 may remain focused on the pa tient’s emotions and not mine.
Differences anti stages The major difference with neuro-oncology patients is that they are struggling to relate to their environment because of their in creasing disability (Noel et al, 1986; Shapiro and Kornfield, 1987; Villejo and Meyers, 1991), whether physical, visual, speech deficit, personality change or cogni tive impairment. This is intrinsic to how much that person feels in charge of his/her life, as a decrease in abilities disempowers that person. Any of these symptoms can impair the patient’s ability to understand, remember, use patient education resources or maintain social judgment. Family members suffer two major shocks: the assault of the illness on the pa tient’s lifespan and the fear that these gross changes bring about. Jane’s parents mourned the loss of their bright, vivacious daughter while being bombarded with anger by this lookalike stranger who, due to steroids and partial alopecia, was becom ing increasingly unrecognizable. John fear
554
ed that he would lose his mental faculties, become a vegetable and a burden on his wife. He could not see the point of going on. In view of this overriding fear, it is not surprising that in two Thames regions, only 21% of patients with a brain tumour die at home, compared with 30% of patients with all other cancers (Wheildan and McKeran, 1990). The fear of the unknown and the nature of the disabilities become unmanageable. The stages that families pass through are as follows. Shock or acute phase This stage begins at diagnosis (Rait and Lederberg, 1989) and is perceived by the patient as a threat to his/her life and by family members as a fear of losing their lov ed one. It may be followed by numbness, disbelief or denial (Heinrich and Schag, 1984). Such feelings often occur in hospital when the person becomes a patient and sur renders his/her life up to professionals. The family often tries to cope by seeking information and protecting the patient from the worst, or individually remembering dif ferent sets of facts, blurred by the anxiety of waiting for a diagnosis; communication can therefore become fraught (Ram, 1992). Most families say that trying to cope with this uncertainty is one of the worst times because they no longer feel they have any control over their lives. Research shows that between 25% and 50% of patients receiving inpatient treat ment for cancer suffer from an anxiety or depressive disorder at some time (Hughes, 1987). As time goes on, some of these con flicts and communication difficulties may be resolved, but equally they may increase. Chronic phase Treatment, hospitalization and the period of remission may fall into the chronic phase. This stage can produce confounding variables in the patient’s psychological state, e.g. an acute confusional state (Welch-McCaffrey and Dodge, 1988), loss of appetite, weight loss, fatigue, agitation, or withdrawal (Loescher ct al, 1989). Fam ily members may show signs of stress while trying to balance each other’s needs. Jane’s mother felt she was becoming de pressed through trying to care for her two daughters and maintaining her part-time job. Jane’s father felt he was coping by de taching himself emotionally from the fam ily and by keeping himself busy at work
Downloaded from magonlinelibrary.com by 130.237.122.245 on January 18, 2019. British Journal of Nursing, 1992, Vol I, No 11
t
Psychological care of neuro-oncology patients and their families
‘ In the presence of anxiety and urgency, people who are distressed or ill process information in an atypical manner, and their normal way of listening, remembering, forgetting and responding alters. 9
and at home. Jane’s sister stopped being withdrawn when she was included in the sharing of information. Resolution phase The resolution phase covers the experience of bereavement and adaptation or recovery from the death of the patient. Each stage of grief has recognizable characteristics (Parkes, 1986) although this process will vary in duration and form, according to the family’s experience and the life expectancy of the patient, i.e. whether old or young.
(
Nursing interventions $
What interventions are effective when working with these families and what are nurses’ responsibilities? Before attempting to answer these questions, it is necessary to define anxiety and depression. Anxiety is the response of an organism to a threat, real or imagined. A distinction can be made between acute anxiety, which generally occurs in response to a real threat, and chronic anxiety, which is more related to imagined threats. Depression consists of a numbr of syn dromes. The central features are low mood, pessimistic thinking, lack of enjoyment, re duced energy and slowness. Depression has degrees of severity, ranging from sadness, through flatness of affect or feeling, to sui cide and psychosis, which is characterized by delusions and hallucinations (Gclder and Mayou, 1989). In this setting there is no clear-cut dis tinction between normality and psychiatric illness (Moorey and Greer, 1989). Psycho logical care is the responsibility of every member of the multidisciplinary team and has four basic components (Nichols, 1984). Emotional care As nurses we should develop our own selfawareness so that we do not just tolerate the family’s distress but are empowered to take it on. What are our attitudes to emo tion? Where are our strengths and weak nesses? Do we know what our resources are? It is essential to relate in a manner that communicates permission, acceptance and safety. This will enable the family not to feel the need to suppress emotion or feel ashamed or feel that they are being awk ward. Emotional care involves talking and listening without ignoring or compulsively intervening (Wooley et al, 1991). John and his wife needed acceptance of their feelings before they were able to move on. John began to stop denying his condi British Journal of Nursing, 1992, Vol I, No 11
tion which meant that he became more aware of his current life circumstances. Jane needed her anger held until she was able to face the fact that she had changed from being a nurse to being a patient. Informational care In the presence of anxiety and urgency, people who are distressed or ill process in formation in an atypical manner and their normal way of listening, remembering, for getting and responding alters. The nurse must therefore check repeatedly for feed back and remember to supply more infor mation. Jane’s parents arranged repeated visits to the consultant to try to understand the prognosis and make sense of the fact their daughter was going to die. Jane herself knew very little about brain tumours but the nursing staff assumed that she did, which stuck her in a false reality that she was going to recover. It was felt that she was denying it, but she was not — she was just too afraid to ask. The family were working on different parameters and this aggravated communication difficulties. Basic counselling skills These are fundamental to good communi cation and include listening carefully with full attention, reflection, empathy and fo cusing. Communication does not involve solving other people’s problems, being helpful/taking over, or giving false reassur ance. It is about knowing when to set limits and recognizing when specialist interven tion is needed. Counselling is a process through which one person helps another by purposeful conversation in an understanding atmos phere. It seeks to establish a helping rela tionship in which people being counselled can express their thoughts and feelings in such a way as to clarify their own situation, come to terms with new experiences, see their difficulties more objectively, and so face their problems with less anxiety and tension. Its basic purpose is to assist indi viduals to make their own decisions from the choices that are available (Nurse, 1980). Monitoring and referring on This stage can be an arbitrary or collabor ative decision. It usually occurs when the person becomes frankly disturbed, e.g. mute and withdrawn or develops a steroidinduced psychosis, or when professionals recognize their own limits, as with John. He was referred to me because he needed help with managing his anxiety and one
555
Downloaded from magonlinelibrary.com by 130.237.122.245 on January 18, 2019.
Psychological care of neuro-oncology patients and their families
iPoor comm unica tion causes more suffering than any other problem except unrelieved pain . . . Good comm unica tion markedly improves the quality of life of all family members . . . by reducing levels of anxiety and depression. 9
professional sensed that it was being exacer bated by the difficulties in his marriage. Jane’s referral was from a nurse who had wanted to facilitate as much help as possible for a fellow colleague, but who felt unable to cope with Jane’s anger and had seen the potential hazards for the family because of their split communication. Poor communication causes more suffer ing than any other problem except unre lieved pain (Stedeford, 1981). Good com munication markedly improves the quality of life of all family members (Linn et al, 1982) by reducing levels of anxiety and de pression. Other specialist services that are effective are skilled counselling for problem solving and cognitive and behavioural ther apy (Heinrich and Coscarelli, 1984; Green et al, 1992). Support groups can help pa tients and their families to realize that their reactions to the illnesses are normal (Amato, 1991).
Conclusion 1 would like to end with a quotation from a family therapist who had a brain tumour and struggled within the system until she found this resolution: ‘R ather surprisingly I found th at the prospect of death itself did not concern or upset me nearly as m uch as the u n known and terrifying thought of dying. Horrific images flashed across my mind of living as a vegetable, incoherent and a burden to everyone. Pulling the plug and when to do it became an obsession. I felt I had the issue somewhat resolved
KEY POINTS •
Patients are viewed by the multidisciplinary team in their social context and which stage they are at in their journey through their illness.
•
Patients with a primary brain tumour or metastasis will have different experiences from those with tumours outside the central nervous system.
•
Neuro-oncology patients are faced with losing control of their ability to relate to the environment.
•
Family members are faced with the fear that these changes bring about.
•
The experience of coping with cancer produces an emotional reaction in patients and their families. There is no clear-cut distinction between normality and psychiatric illness in this setting.
•
Psychological care involves every member of the multidisciplinary team facilitating good communication skills.
556
when I had established to my satisfac tion th at those closest to me would use their own best judgm ent as to which stage they would w ant to go on living themselves and apply th at same decision to me’ (Morawetz, 1988).
Without psychological care and good com munication within the family and with hos pital staff, the patient would have had a vastly different and more fearful quality of life. j^ T
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