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The experience of nurses caring for young-middle aged patients dying of Cancer Canning, Shelley 1995

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The Experience of Nurses Caring For Young-Middle Aged Patients Dying of Cancer: A Descriptive Study by Shelley Canning B.Sc, University of V i c t o r i a , 1980 B.S.N., University of B r i t i s h Columbia, 1988 A Thesis Submitted i n P a r t i a l F u l f i l l m e n t of The Requirements for the Degree of Master of Science i n Nursing i n The Faculty of Graduate Studies School of Nursing We accept th i s thesis as conforming to^the required standard THE UNIVERSITY OF BRITISH COLUMBIA December, 1995 © Shelley Elisabeth Canning, 1995 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. The University of British Colur Vancouver, Canada Date /S* QososTtJbjlsJ /<?9-T~ DE-6 (2/88) i i Abstract Research has addressed issues which face the nurse caring for patients dying of cancer. However, t h i s research has focused primarily on the older adult population. As a r e s u l t , nursing issues with respect to the 20-45 year old patient group have not been examined. This study intends to address t h i s gap i n the l i t e r a t u r e by describing the experience of oncology nurses caring for young-middle aged ( i e . 20-45 years old) patients dying of cancer. The conceptual framework guiding t h i s study recognizes that t h i s patient group presents unique and d i f f i c u l t nursing challenges. I t i s believed that insights into these issues may help to prevent the stress and burnout which these nurses experience. A descriptive study design with convenience sampling was used. A l l of the fourteen subjects interviewed were registered nurses working i n oncology who had cared for a young-middle aged patient within the past two years. Data analysis was concurrent with data c o l l e c t i o n , confirming the categories derived from the conceptual framework. The following areas were selected for analysis: issues i n i d e n t i f y i n g with patients; issues i n caring for families; and issues i n s h i f t i n g from a curative to a p a l l i a t i v e focus. i i i Study findings and analysis revealed that oncology nurses f i n d nursing young-middle aged patients dying of cancer p a r t i c u l a r l y d i f f i c u l t and s t r e s s f u l . Patient i d e n t i f i c a t i o n appeared to be an important factor i n creating t h i s stress. In addition, the nurses i d e n t i f i e d the dependent children and the parents of t h e i r patients as p a r t i c u l a r l y challenging. Further, they f e l t that they lacked expertise i n providing p a l l i a t i v e care and perceived a lack of support i n t h e i r work environment for the provision of t h i s care. The nurses f e l t overwhelmed by the i n t e n s i t y of the sadness and g r i e f they experienced when nursing the target patient group. They c l o s e l y monitored the l e v e l of t h e i r patient involvement, often employing distancing strategies. However, the nurses also described the p o s i t i v e benefits and insights they gained from these patient r e l a t i o n s h i p s , despite the d i f f i c u l t i e s and g r i e f they experienced. i v Table of Contents Abstract i i Table of Contents . . . . . . . . . . i v Acknowledgements . v i Chapter One - Introduction 1 Background to the Problem 1 Problem Statement . . . . . . . . 3 Purpose 4 D e f i n i t i o n of Terms 4 Conceptual Framework . . . . 5 Significance of Study . . . 8 Summary . . . . 8 Chapter Two - Review of Related L i t e r a t u r e .. . .•. 1 0 General Nursing Care of the Dying Patient . . 1 0 Nursing Care Behaviours Research 1 2 Stressors Involved i n Caring for the Dying Patient . . 1 6 Addressing the Stressors 2 2 Summary 28 Chapter Three - Methodology 3 0 Research Design . . . . . . . . . . . . . . . 3 0 Sample Selection 3 1 Sample Description . 3 2 Data C o l l e c t i o n Procedures . . 3 3 Data Analysis 3 5 E t h i c a l Considerations . . . . . . . . . . . . 3 7 Limitations . 3 7 Summary 3 8 Chapter Four - Presentation of Findings . . . . . . 3 9 General Responses to the Experience 3 9 Comparisons With Older Dying Patients . . . . 4 2 Family As A Stressor . 4 7 Other Stressors . . . . . 5 1 System stress 5 1 I d e n t i f i c a t i o n 5 3 Helplessness, sadness, g r i e f 5 6 Coping With the Stress 6 0 System support. 6 0 Stepping back 6 3 Talking about i t 6 7 Outside a c t i v i t i e s . 7 0 P o s i t i v e Benefits . . . . 7 2 Making Sense of I t 7 5 Summary 7 8 V Chapter Five - Analysis of Findings 80 Issues i n Identifying with Patients . . . . . 80 The nature of the i d e n t i f i c a t i o n . . . . 81 Coping mechanisms 84 The costs of distancing behaviours . . . 85 Issues i n Caring f o r Families . . 90 The dependent children 90 The parents . . . . . . . . . . . . . . . 92 Issues i n S h i f t i n g From a Curative to a P a l l i a t i v e Focus . 95 Summary 102 Chapter Six - Summary, Conclusions, Implications . 105 Summary . . . . . 105 Conclusions . . . . 108 Implications 110 Nursing practice and education . . . . . 110 Nursing administration . .112 Nursing research 116 References 120 Appendix: A 125 Appendix: B 126 Appendix: C 127 Appendix: D . . . . . . . . 128 V Acknowledgements I would l i k e to thank a l l of the nurses who par t i c i p a t e d i n t h i s study, sharing t h e i r insights and understanding of t h i s often d i f f i c u l t part of t h e i r p r a c t i c e . I would also l i k e to,thank Dr. S a l l y Thome and Pat P o r t e r f i e l d , members of my thesis committee, for t h e i r guidance, encouragement and patience. In p a r t i c u l a r , Dr. Thome's example and encouragement has been a p i v o t a l and po s i t i v e force throughout my nursing career. I would l i k e to thank my family for a l l of t h e i r e f f o r t s helping me to maintain my other roles of wife and mother while completing t h i s t h e s i s . F i n a l l y , I would l i k e to o f f e r a spe c i a l thanks to my mother, who has always been the best example of both nurse and mother that I know, and as such has provided me with invaluable support. 1 Chapter One - Introduction Background to the Problem Recent advancements i n research and technology have lead to improvements i n the treatment of cancer patients. However, i t remains that for many patients, t h e i r disease w i l l progress and r e s u l t i n death. The care of the dying patient i s currently defined i n terms of the concepts of hospice and p a l l i a t i v e care (Scanlon, 1989). The l i t e r a t u r e recognizes that caring for the dying patient i s primarily the work of nurses and thus p a l l i a t i v e care i s of p a r t i c u l a r concern to nursing (Davies & Oberle, 1990; H u l l , 1989; Quint, 1972). Research i n p a l l i a t i v e care frequently focuses on the d i f f i c u l t i e s inherent i n providing t h i s care. Nurses caring for dying patients have been observed to be vulnerable to a v a r i e t y of stressors, including: stressors i n t h e i r own inner experience, stressors r e l a t e d to t h e i r work environment, and stressors r e l a t e d to patients and families (Munley, 1985; Scanlon, 1989). In p a r t i c u l a r , a high degree of nurse-patient involvement i s viewed as both i n t e g r a l to the provision of p a l l i a t i v e care (Rovinski, 1979) and as a p o t e n t i a l source of stress for the nurse (Scanlon, 1989). 2 S t a t i s t i c s describing the rates of cancer incidence and mortality indicate that the vast majority of patients developing cancer and dying from t h i s disease are over the age of 45. S p e c i f i c a l l y , Canadian s t a t i s t i c s reveal that only 10% of new cancer cases i n 1987 occurred i n patients under the age of 45, and only 5% of the t o t a l deaths attributed to cancer i n 1989 involved patients under the age of 45 (National Cancer In s t i t u t e of Canada, 1992). A small but s i g n i f i c a n t number of such patients are children. The s p e c i a l t y of p e d i a t r i c oncology addresses the issues involved i n caring for children with cancer, while oncology and p a l l i a t i v e care nurses care for adult cancer patients. However, as i l l u s t r a t e d above, the patients who die from cancer between the ages of 20 and 45 years o l d represent only a very small portion of the p r a c t i c e of these nurses. With the majority of patients receiving p a l l i a t i v e care being over the age of 45, the p a l l i a t i v e care l i t e r a t u r e and the research i n the f i e l d predictably focuses on patients i n t h i s age group. However, recently the p a l l i a t i v e care l i t e r a t u r e has begun to address the issues around patients dying with human immunodeficiency virus (HIV) disease who are frequently under the age of 45. The issues unique to t h i s patient group are beyond the scope of t h i s study; however i t i s 3 recognized that there may well be some common ground which can be made e x p l i c i t by continuing research i n the f i e l d s of both cancer and HIV p a l l i a t i v e care nursing. Thus, t h i s research study i s intended to address the gap i n the l i t e r a t u r e with respect to the experience s p e c i f i c to the nursing care of young-middle aged patients (20-45 years old) who are dying of cancer. Problem Statement Dying patients between the ages of 20 and 45 years o l d represent only a small portion of the pra c t i c e of oncology and p a l l i a t i v e care nurses. As a r e s u l t , nursing 'care issues related to t h i s patient group have not been e f f e c t i v e l y addressed i n the l i t e r a t u r e . This gap i n the l i t e r a t u r e r e f l e c t s a gap i n our understanding of the experience of the nurses caring fo r these patients. Insights into t h i s experience may serve to guide nursing education and administration r e s u l t i n g i n better support for nurses caring for these d i f f i c u l t patients. This study intends to address t h i s problem by describing the experience of the oncology nurse caring for young-middle aged patients dying of cancer. 4 Purpose The purpose of t h i s study i s to describe the experience of the oncology nurse when caring f o r young-middle aged patients dying of cancer. D e f i n i t i o n of Terms The following terms are defined i n an e f f o r t to make t h e i r meanings e x p l i c i t i n terms of the d i r e c t i o n they provide for t h i s research study. Thus, these d e f i n i t i o n s are intended to provide o r i e n t a t i o n and set boundaries for the study rather than serve as operational d e f i n i t i o n s (Sandelowski, Davis, & Harris, 1989). a) Experience: the sum of the feelings, emotions, responses, impressions, knowledge, and behaviours that describe the nurse's interactions with the patient. b) Care: those behaviours which the nurse employs i n providing both emotional and physical support, and a s s i s t i n g the patient to achieve the highest l e v e l of wellness possible. c) Young-middle aged: refers to a patient between the ages of 20 and 45 years old. d) Dying patient: a patient for whom cure i s no longer possible; where curative treatments have been replaced by p a l l i a t i v e care. 5 Conceptual Framework A conceptual framework refers to "a group of concepts which may or may not be r e l a t e d to each other, but which are believed to be important i n understanding or explaining phenomena" (Menke, 1983, p. 416). The following conceptual framework outlines the assumptions or i e n t i n g and d i r e c t i n g t h i s study as based on the researcher's nursing experience and understanding of the r e l a t e d l i t e r a t u r e . The nursing care of young-middle aged dying patients involves challenges other than those faced when caring for older dying patients. These patients are frequently involved i n e s t a b l i s h i n g careers and b u i l d i n g f a m i l i e s . Their family members may include t h e i r young children, t h e i r parents, and t h e i r grandparents. In caring for these patients, the nurse may be d i r e c t l y involved with a l l of these family members. Frequently both patient and family demand information and support from the nurse. Some of the d i f f i c u l t i e s facing the nurse are associated with the often intense relationships that form, not only with the patient but with the family members as we l l . In addition, the nurses caring for these patients are often accomplishing s i m i l a r developmental tasks i n terms of b u i l d i n g families and careers. Thus, there may be s i g n i f i c a n t i d e n t i f i c a t i o n with the patient on 6 the part of the nurse. However, regardless of whether the nurse can personally i d e n t i f y with the patient's s i t u a t i o n , i t remains that the death and dying of someone who has not l i v e d a f u l l l i f e i s seen as p a r t i c u l a r l y t r a g i c (Glaser & Strauss, 1964). The concept of " s o c i a l l o s s , " a r t i c u l a t e d by Glaser and Strauss i n 1964, acknowledges the d i f f i c u l t y nurses may have i n caring for dying "patients i n middle years [who] are i n the midst of a f u l l l i f e , c ontributing to fa m i l i e s , occupations, and society" (p. 119). Perceived s o c i a l loss i s believed to have a s i g n i f i c a n t impact on the nurse's f e e l i n g s , with the death of a high s o c i a l loss patient being most upsetting to the nurse. The early work by Glaser and Strauss (1964) also suggested that high s o c i a l loss patients received more than routine care while the opposite was true for low s o c i a l loss patients. Thus, there i s a t r a d i t i o n recognizing that death among d i f f e r e n t groups of patients may have d i f f e r e n t meanings for nurses. Nursing young-middle aged dying patients presents unique stressors. For example, the nurse must deal with the stressors involved i n intense family relationships because families are i n v a r i a b l y coping with death before i t i s time. Further, there must be c a r e f u l balancing between i d e n t i f i c a t i o n with, and 7 detachment from, the patient and family. The issues of caregiver stress and burnout are p a r t i c u l a r l y s i g n i f i c a n t i n describing the experience of nursing these patients. "However, i n the midst of t h i s humanly d i f f i c u l t experience, nurses frequently speak of t h e i r work as rewarding, of t h e i r relationships with patients and families as meaningful, and of a desire to continue to work with dying patients" (Scanlon, 1989, p. 495). The major assumptions which guide t h i s study are summarized as follows. The nursing care of young-middle aged dying cancer patients i s s t r e s s f u l . There are both s i m i l a r i t i e s and differences when compared with the care of other patient age groups. However, there may well be stressors and d i f f i c u l t i e s which are unique to nursing the young-middle aged population. The issues involved i n t h i s area of oncology nursing have not been well studied. Insights and a deeper understanding of the nature of these issues may better prevent the symptoms of stress and burnout that are experienced by nurses caring for these patients. Based on the above conceptual framework, the following categories for investigation have been i d e n t i f i e d and form the basis for the guided interview (see Appendix D): 1. Sources of stress i n nursing young-middle aged patients dying of cancer. 2. Strategies for coping with the stress. 3. P o s i t i v e aspects of caring for these patients. 4. Making sense of the experience. Significance of Study With the majority of cancer deaths occurring i n patients over the age of 45, there i s a gap i n the l i t e r a t u r e with respect to the nursing care of young-middle aged dying patients. This research study addresses t h i s gap. The research findings w i l l describe the experience of oncology nurses caring f o r young-middle aged patients dying of cancer. The researcher believes that insight into t h i s experience could guide nursing education and administration such that nurses might be better able to cope with the aspects of providing care to t h i s patient group which prove d i f f i c u l t , and subsequently improve the q u a l i t y of patient care. Summary This thesis i s organized around s i x chapters. Chapter One i s an introductory chapter. It describes the nature and significance of the problem, explains the conceptual framework which guides the study, and includes the study's defining problem statement and purpose. Chapter Two i s a review of the relevant 9 l i t e r a t u r e with respect to the issues involved i n nursing dying patients. Chapter Three outlines the research methodology used i n t h i s study including a description of the sample. Chapter Four presents the study's findings from the interviews. Chapter Five discusses and analyzes these findings. And, Chapter Six provides a summary, conclusions, and discussion of the implications a r i s i n g out of the study. 10 -Chapter Two - Review of Related L i t e r a t u r e Nursing dying patients presents unique demands. The repeated exposure to su f f e r i n g and death requires s e n s i t i v i t y , understanding and compassion on the part of the nurse (Scanlon, 1989). A v a r i e t y of stressors makes t h i s care d i f f i c u l t and may lead to burnout. The following l i t e r a t u r e review examines several issues with respect to the care of the dying patient. It begins with a general discussion of the nature of the caring or supportive r o l e of the nurse as outlined i n the l i t e r a t u r e . A discussion of the nursing behaviours c r i t i c a l to providing t h i s care, both as perceived by the nurse and by the patient and family, follows. Some of the d i f f i c u l t i e s nurses face i n caring for dying patients, p a r t i c u l a r l y i n terms of stressors, are examined. And f i n a l l y , ways of addressing these stressors and preventing burnout w i l l be discussed. General Nursing Care of the Dying Patient In describing the r o l e of nursing i n p a l l i a t i v e care, the terms "support" and "care" frequently appear i n the l i t e r a t u r e . Benoliel (1976) constructed an ear l y d e f i n i t i o n of care using components which c l o s e l y p a r a l l e l the dimensions of Davies and O'Berle's (1990) Supportive Care Model. Scanlon (1989) uses the term 11 "emotional support" i n describing an i n t e g r a l part of the nurse's r o l e i n caring for the p a l l i a t i v e patient. And, Larson (1986) defines the nursing behaviours c e n t r a l to nursing dying patients as "caring." Thus, the terms support and care are used v i r t u a l l y synonymously i n describing the essence of p a l l i a t i v e care. In an attempt to c l e a r l y define the concept of support i n r e l a t i o n to the supportive r o l e of the nurse i n caring for patients with advanced cancer, Davies and Oberle (1990) developed a Supportive Care model. However, they were unable to d i s t i n g u i s h between the concepts of support and care, and concluded that t h e i r model may, i n fact, describe a l l nursing care (Oberle & Davies, 1992). The l i t e r a t u r e describes caring as c e n t r a l to the practice of nursing (Scanlon, 1989; Watson, 1988). Caring i s viewed from a h o l i s t i c approach including: understanding the disease process, a l l e v i a t i n g s u f f e r i n g , and understanding the patient both as an i n d i v i d u a l and as part of a family (Scanlon, 1989). In addition, Watson (1988) notes that not only does the patient benefit from the caring r e l a t i o n s h i p , the nurse benefits as well. While a h o l i s t i c approach to care i s e s s e n t i a l to the care of a l l patients, i t i s p a r t i c u l a r l y 12 s i g n i f i c a n t i n providing p a l l i a t i v e care. The goals of p a l l i a t i v e care address the physical, emotional, and s p i r i t u a l needs of the patient and extend to the family as well (Rovinski, 1979; Scanlon, 1989). Thus, p a l l i a t i v e care l i e s p r i marily i n the domain of nursing with i t s focus on providing comfort and a l l e v i a t i n g s u f f e r i n g (Scanlon, 1989). Providing p a l l i a t i v e care and nursing the dying requires the highest s k i l l s . Saunders (1978) observes that the nurse must be deft, dexterous, observant, v i g i l a n t and sensitive to the needs of both patients and r e l a t i v e s . Further, i t i s the actual caring behaviours that are required, rather than good intentions and o f f e r s (Rovinski, 1979). Thus, the general l i t e r a t u r e describes a nursing r o l e that i s h o l i s t i c i n i t s "caring" and "support" and provides c l i n i c a l l y competent interventions. Nursing Care Behaviours Research Nursing care behaviours i n r e l a t i o n to dying patients have been the focus of several studies i n the l i t e r a t u r e . Studies have examined the nature and effectiveness of these behaviours from the perspectives of nurses, patients, and families. D i f ferent populations of nurses have been studied with respect to variations i n care behaviours towards 13 the dying. A study by Waltman and Zimmerman (1991) examined whether there were differences i n the behavioural intentions of nurses towards dying patients rel a t e d to differences i n the age, educational l e v e l , place of employment, area of work, and the nurses' personal experiences with death. Data were obtained from a convenience sample of nurses responding to a questionnaire. The re s u l t s indicated that nurses across d i f f e r e n t settings were a l l found to spend more time with dying patients than non-dying patients. . However, demographic differences were observed with younger nurses, nurses with master's degrees, f u l l - t i m e nurses, and those employed i n schools of nursing being more l i k e l y to openly communicate with dying patients and fa m i l i e s . In contrast, older nurses, nurses working i n areas other than c r i t i c a l care, and those with personal death experiences were most l i k e l y to provide continuing care for bereaved family members. In addition to examining the nature of, and variati o n s among care behaviours of nurses, a number of research based studies have examined whether these behaviours do, i n fact, meet the patient's perceptions of t h e i r care needs (Larson, 1986; Lev, 1991; Waltman & Zimmerman, 1991). Larson (1986) questioned whether there was agreement between nurses' perceptions of caring and patients' perceptions of caring. While 14 nurses ranked behaviours i n the a f f e c t i v e domain as those most important i n making the patient f e e l cared for, the patients ranked the nurse's a v a i l a b i l i t y and professional knowledge as most important. Larson (1986) acknowledged l i m i t a t i o n s of t h i s study based on i t s forced-choice format. However, a l a t e r study by Lev (1991) using a q u a l i t a t i v e method interviewing both patients and family members about t h e i r concerns revealed s i m i l a r findings. Lev (1991) suggested that what constitutes appropriate supportive care of patients and families may be perceived d i f f e r e n t l y by patient groups and nursing groups. These findings suggest a need to define the nature and context of nursing care behaviours, and to c l a r i f y that these behaviours do, i n fact, accurately address patients' needs. Kristjanson (1986) also studied the supportive care of dying patients. She i d e n t i f i e d those care behaviours that were ranked as most important to the families of cancer patients with advanced disease. This research study involved a q u a l i t a t i v e phase i d e n t i f y i n g indicators that families of dying cancer patients perceived to be important i n patient care and a Q-Sort methodology to obtain r e l a t i v e rankings of the items i d e n t i f i e d . The sample included patients i n home care, acute care, and p a l l i a t i v e care settings. While 15 some differences were observed between settings with respect to the f i v e most important items, the item ranked as highest i n importance for the t o t a l sample was the r e l i e f of patient pain. Another highly ranked item involved caregivers communicating information i n a straightforward manner. S i m i l a r l y , Hull's (1989) review of the l i t e r a t u r e with respect to family needs and supportive nursing behaviours with dying cancer patients concurred that patient comfort was of primary importance. Nursing interventions consistently i d e n t i f i e d as le a s t supportive to family members included behaviours designed to encourage v e n t i l a t i o n of fe e l i n g s . H u l l observed that t h i s f i nding was contrary to widely held professional opinion. She suggested that while some studies d i d l i n k family needs and supportive nursing behaviours, families c l e a r l y indicated t h e i r preference fo r patient-centered information and t h e i r wish to focus attention away from t h e i r own emotional needs, e s p e c i a l l y when nurses were perceived as busy and having l i m i t e d time. Cle a r l y , i t i s v i t a l to understand what the patient and family perceive as c r i t i c a l nursing behaviours i n the care for the dying. That there are discrepancies between what nurses perceive as supportive and what patients and families perceive as 16 supportive has been well i d e n t i f i e d i n the l i t e r a t u r e (Hull, 1989; Larson, 1986; Lev, 1991). However, there i s also considerable consensus within the l i t e r a t u r e . The l i t e r a t u r e i d e n t i f i e s that patients and family members equate e f f e c t i v e caregiving with e f f e c t i v e communication s k i l l s (Hull, 1989; Kristjanson, 1986; Lev, 1991). Further study addressing the discrepancies i s important i n increasing nursing's effectiveness i n a s s i s t i n g patients and families through t h i s very d i f f i c u l t experience. Stressors Involved i n Caring for the Dying Patient Issues of work-related stress and burnout are c e n t r a l to discussions of p a l l i a t i v e care. Munley (1985) i d e n t i f i e d that hospice s t a f f are susceptible to three l e v e l s of stressors: those evoked by patients or family members; those occurring i n t h e i r own inner experience; and those re l a t e d to the hospice work environment. Vachon (1987) conducted a major study of occupational stress r e l a t e d to caring for the c r i t i c a l l y i l l , the dying, and the bereaved. Approximately 580 caregivers, representing a wide v a r i e t y of d i s c i p l i n e s , were interviewed with the majority of these caregivers being nurses and physicians. Contrary to expectations, the findings 17 revealed that caregivers f e l t that more of t h e i r stressors emerged from t h e i r work environment and from t h e i r occupational r o l e than from t h e i r d i r e c t work with dying patients and t h e i r f a m i l i e s . S i m i l a r l y , Munley's (1985) q u a l i t a t i v e study of stress among hospice s t a f f revealed s i g n i f i c a n t occupational r o l e and work environment stressors. Occupational r o l e stress was found i n s t a f f interactions as a r e s u l t of the high expectations hospice s t a f f have of one another. Also, stress was experienced from being involved i n a work context that values s e n s i t i v i t y and being onstage as a giver at a l l times. Stressors related to the work environment included working under t i g h t budget constraints with resultant inadequate resources and s t a f f i n g d i f f i c u l t i e s (Munley, 1985; Vachon, 1987). While Vachon's (1987) re s u l t s c l e a r l y reveal the si g n i f i c a n c e of occupational r o l e and work environment re l a t e d stressors, much of the l i t e r a t u r e addresses stressors r e l a t e d to patient and family variables.' S p e c i f i c a l l y , Vachon found that stressors r e l a t e d to patient and family variables accounted for 22% of the occupational stressors mentioned during interviews. She suggested that at le a s t some of the stress caregivers reported i n response to occupational r o l e and work environment stressors was a displacement of 18 the stress experienced i n caring for dying patients and t h e i r f a m i l i e s . The remainder of t h i s section of the l i t e r a t u r e review w i l l focus on these stressors. Patient-family stressors are most common i n settings where caregivers have long-term re l a t i o n s h i p s with patients and f a m i l i e s , such as oncology (Vachon, 1987). The stress arises from the caregiver i d e n t i f y i n g with the suffering that patients and families experience. The sustained intimacy that characterizes the concept of p a l l i a t i v e care and hospice leaves the nurse p a r t i c u l a r l y vulnerable to stresses associated with over-investment and over-involvement (Munley, 1985). Scanlon's (1989) discussion paper i d e n t i f i e s the danger of over-involvement with patients and families i n providing p a l l i a t i v e care, and suggests maintaining a healthy detachment balanced by a commitment to non-abandonment. The idea of balanced caregiving i s also examined i n an a r t i c l e by Larson (1992). He cautions against using the increasingly popular and increasingly negative term of "codependent nurse," and instead maintains that the major source of the problem i s i n the s i t u a t i o n or context rather than i n the caregiver. Further, i n an overview of hospice nursing, Rovinski (1979) asserts that a high degree of nurse-patient 19 involvement i s , i n fact, i n t e g r a l to providing p a l l i a t i v e care. The intense relationships that develop between nurses and dying patients prove s t r e s s f u l f o r several reasons. By becoming too attached, nurses may fear becoming too involved i n the su f f e r i n g as well. These overwhelming feelings may l i m i t the a b i l i t y of the nurse to support the patient (Zelewsky & B i r c h f i e l d , 1992). In addition, nurses who become over-involved with t h e i r patients may also become over-protective and have d i f f i c u l t y r e l i n q u i s h i n g care to other caregivers. C l e a r l y , the balance between involvement with the patient and distance from the patient i s a c r u c i a l factor i n providing care. Certain types of patients and families are i d e n t i f i e d as being more s t r e s s f u l to care for than others. For example, patients experiencing pain are often s t r e s s f u l to nurse (Munley, 1985). Vachon (1987) describes a v a r i e t y of s t r e s s f u l patients and f a m i l i e s : those who act i n an unexpected way; those with whom caregivers have d i f f i c u l t y communicating; those who become extremely depressed, angry, withdrawn, or psychotic; those i n denial; those who act out by using alcohol or drugs; and those engaged i n avoidance behaviour. 20 Cancer patients have been i d e n t i f i e d as being very s t r e s s f u l to nurse (McElroy, 1982; Vachon, 1987). Some of the d i f f i c u l t i e s these nurses face include: close involvement with the patients over an extended period; a sense of repeated f a i l u r e with frequent deaths; and d i f f i c u l t y i n deciding what message to give patients and families when the tr a j e c t o r y of the i l l n e s s i s so unpredictable (Bolle, 1988; McElroy, 1982; Scanlon, 1989). In addition, patients may be viewed as being p a r t i c u l a r l y s t r e s s f u l to work with because of t h e i r age. For example, the nursing care of dying c h i l d r e n presents unique stressors. Nurses may experience feelings of helplessness i n t r y i n g to r e l a t e to the dying c h i l d , and there may be an uncertainty i n determining the extent of the c h i l d ' s understanding of death. Coody (1985) notes that i t i s i n s t i n c t u a l to t r y to protect children and carry t h e i r burdens for them. In contrast, some nurses f i n d older patients serve as a source of stress. Nurses empathize with t h e i r loneliness and f e e l p a r t i c u l a r sympathy for those patients who die alone, having outlived t h e i r r e l a t i v e s (Vachon, 1987). The l i t e r a t u r e has not investigated the young-middle aged patient group as an independent group i n terms of caregiver stress. However, t h i s patient group has been i d e n t i f i e d as being uniquely s t r e s s f u l as part of studies or discussions of larger populations. For example, Vachon's (1987) study found that, although caregivers i d e n t i f i e d stressors i n patients throughout the l i f e s p a n , the young-middle aged patient group was viewed as being uniquely s t r e s s f u l . S i m i l a r l y , Alexander's (1990) quantitative study measuring the major sources of stress for p a l l i a t i v e care nurses found that dealing with i l l n e s s and death i n patients below the age of 40 years was c o n s i s t e n t l y a greater source of stress than dealing with patients i n older age groups. He theorized that the p r i n c i p a l reason for t h i s difference lay i n the nurse i d e n t i f y i n g with the younger patients and experiencing a greater sense of i n j u s t i c e regarding t h e i r deaths. Vachon's (1987) r e s u l t s indicated that the stress l a y i n watching the suf f e r i n g of these young patients rather than i n i d e n t i f y i n g with them. She also found that caregivers questioned the i n j u s t i c e i n the s u f f e r i n g and death of these patients. While the re s u l t s of these studies may d i f f e r ! w i t h respect to the r o l e that patient i d e n t i f i c a t i o n plays i n caregiver stress, they do agree that nurses are vulnerable to stress when they i d e n t i f y with c e r t a i n patients and t h e i r f a m i l i e s . When i d e n t i f y i n g with p a r t i c u l a r patients, nurses are more l i k e l y to invest 22 t h e i r emotional energy i n the nurse-patient r e l a t i o n s h i p , and thus they are at r i s k for developing stress responses when these special patients deteriorate and die (Vachon, 1987). "Certain patients are most apt to evoke these responses: ' s o c i a l l y valued patients' such as children, young people, or those who w i l l be leaving young families; i n t e l l i g e n t and cooperative patients; those who are s i m i l a r i n age, s o c i a l c l a s s , or l i f e s t y l e to the caregiver; those with prominent positions i n the community; [and] those who have responded well to treatment" (Vachon, 1987, p. 100). Caring for the young-middle aged dying patient i s inherently s t r e s s f u l . However, as previously stated, t h i s patient group has been studied only as part of investigations of larger patient populations. A greater understanding of the stressors s p e c i f i c to the nursing care of young-middle aged dying patients would contribute greatly to the e x i s t i n g knowledge base. Addressing the Stressors Nursing research has centered not only on i d e n t i f y i n g the stressors i n providing nursing care to the dying, but also on addressing and preventing the burnout which may r e s u l t from these stressors. I t has been recognized that nurses who work with the dying are 23 e s p e c i a l l y vulnerable to professional and emotional burnout (Larson, 1992). These nurse have advanced s k i l l s and high expectations of themselves and each other. Their stressors and challenges are often rewarding but may also cause d i s t r e s s and eventually burnout (McElroy, 1982; Scanlon, 1989). While the research has not addressed the issues of caregiver stress and burnout s p e c i f i c a l l y i n terms of the young-middle aged dying patient, the following discussion applies to t h i s group as i t i s part of the general population of dying patients. Caregiver stress i s manifested i n psychological, behavioural, and physical symptoms. Vachon (1987) notes that the most frequently reported symptoms of stress include: feelings of depression, g u i l t and g r i e f ; s t a f f c o n f l i c t ; marital and family problems; feelings of helplessness, inadequacy, anger, and i r r i t a b i l i t y . Physical symptoms of stress among p a l l i a t i v e care nurses included changes i n eating patterns and sleep disturbances. She found that feelings of depression, g r i e f , and g u i l t constituted the single greatest manifestation of stress i n a l l care s e t t i n g s . McElroy's (1982) l i t e r a t u r e review observes that the most common symptoms of burnout i n the l i t e r a t u r e are exhaustion and fatigue, with impaired problem-24 solving and decision-making a b i l i t i e s . Unchecked, these symptoms lead to anger, resentment, and a b u i l d up of apathy with the caregiver becoming detached from patients and colleagues (Bolle, 1988). The l i t e r a t u r e has addressed ways of dealing with the stress of caring for dying patients. While young-middle aged dying patients have not been studied as an independent patient group, the l i t e r a t u r e on other patient populations and dying patients i n general has applications for nursing the young-middle aged patient group. For example, the l i t e r a t u r e has addressed the stress of caring f o r dying children. In p a r t i c u l a r , nurses caring for children with AIDS face the added stress of the very poor prognosis associated with t h i s disease. To prevent feelings of hopelessness and helplessness, nurses develop care plans which combine both aggressive medical treatment and p a l l i a t i v e care. A balance between these care measures helps to maintain the d i s t i n c t i o n between cure and treatment (Gary, 1992). In caring for dying children, nurses must come to terms with t h e i r own views about death and about ch i l d r e n (Coody, 1985; Gary, 1992). This allows the nurse to view the c h i l d as independent and helps the nurse to function as a partner rather than a protector. 25 The l e v e l of involvement of the nurse must be c a r e f u l l y balanced i n these partnerships. The l e v e l of involvement and i n t e n s i t y of the r e l a t i o n s h i p of the nurse with the young-middle aged dying patient requires a s i m i l a r balancing of the nurse's r o l e s . Zelewsky and B i r c h f i e l d (1992) describe a d i f f e r e n t method of coping with the attitudes and feelings which accompany nursing dying patients. Their discussion paper with respect to strategies for coping with the inherent stressors of caring for the terminally i l l was based on t h e i r c o l l e c t i v e experiences with dying patients i n general and patients affected by human immunodeficiency virus disease. They encourage nurses to become more comfortable with the discomfort of t h e i r own mortality and the experience of working with the dying. The premise of t h i s approach i s that "only when we face and accept the d i f f i c u l t y of being with and caring for the dying w i l l we be able to be with them and care for them" (p. 16). An e a r l y observation by Quint (1972) describes nurses as using "composure t a c t i c s " as a defense mechanism against the d i f f i c u l t i e s of nursing dying patients. However, recent l i t e r a t u r e supports nurses being highly involved with dying patients while employing mechanisms of s e l f - p r o t e c t i o n . For example, Davies and Oberle (1990) i d e n t i f y "preserving own 26 i n t e g r i t y " as the core concept i n t h e i r Supportive Care Model. Vachon (1987) describes strategies for coping with the stressors i n terms of problem-solving mechanisms and emotion-regulating mechanisms. Examples of problem-solving mechanisms include: s t a f f i n g p o l i c i e s , and good orient a t i o n and ongoing educational programmes. Examples of emotion-regulating mechanisms include: having a sense of competence, controls or pleasure i n work, and developing a personal philosophy of i l l n e s s , death, or one's r o l e . S i m i l a r l y , Bolle's (1988) a r t i c l e l i s t s education, regular support group meetings, and m u l t i d i s c i p l i n a r y team meetings as strategies, f o r preventing burnout. Strategies have been i d e n t i f i e d for coping with the stressors surrounding a d i f f i c u l t death. Following a death where there has been an intense involvement, Coody (1985) notes that i t i s the nurse's r e s p o n s i b i l i t y to take a break from intense patient ' involvement. Some form of r i t u a l or remembrance may also prove h e l p f u l i n a s s i s t i n g nurses to move on from these p a r t i c u l a r l y d i f f i c u l t deaths (Gary/ 1992; Hammer, Nichols, & Armstrong, 1992). C l e a r l y , a wide v a r i e t y of mechanisms for coping with stress emerges from the l i t e r a t u r e . Nurses' support of each other, both formally and informally, i s frequently acknowledged (Munley, 1985; Rovinski, 1979; Scanlon, 1989). In addition, maintaining feelings of s e l f -esteem and self-worth are i d e n t i f i e d as successful and important mechanisms for dealing with the stress of nursing dying patients (Davies & O'Berle, 1990; Larson, 1992; Scanlon, 1989). Zelewsky and B i r c h f i e l d (1992) concur that the in d i v i d u a l nurse must develop a l i f e outside of work that nourishes and f u l f i l s s e l f . The prevention of burnout symptoms involves consciously monitoring whose needs are being met and avoiding the p i t f a l l of viewing oneself as a "saviour" (Munley, 1985; Scanlon, 1989). Munley (1985) cautions nurses not to dwell on the d i f f i c u l t deaths but rather to think and t a l k about success s t o r i e s . She observes that "when nurses interpret t h e i r work as having i n t r i n s i c value and they experience sacred moments! i n caring for the dying and t h e i r f a m i l i e s , the rewards of t h e i r r o l e can more than balance the costs" (p. 356). In conclusion, the l i t e r a t u r e i d e n t i f i e s a v a r i e t y of methods for addressing the stresses and avoiding burnout when nursing dying patients. For example, recommendations include having support within the system-or work environment. Further, the l i t e r a t u r e recommends that nurses develop a philosophy of death and an understanding of t h e i r r o l e i n nursing the dying 28 patients. Thus, strategies for preventing burnout target both the work environment and the i n d i v i d u a l . Summary In summary, the l i t e r a t u r e i d e n t i f i e s the need to c l e a r l y define the nature and context of the nursing care behaviours which most appropriately meet the dying patient's needs. With the variations among nurses i n terms of t h e i r care behaviours, i t i s v i t a l that nurses understand what patients and families most value i n t h e i r nursing care. In addition, the l i t e r a t u r e i d e n t i f i e s the care of c e r t a i n patients and families as being p a r t i c u l a r l y s t r e s s f u l . F i n a l l y , t h i s l i t e r a t u r e review addresses how the stressors inherent i n t h i s type of nursing are addressed with the goal of preventing burnout. There i s consensus among both the research based and opinion based l i t e r a t u r e that nursing dying patients i s s t r e s s f u l , and that these nurses are p a r t i c u l a r l y vulnerable to burnout. Patients under the age of 40 have been i d e n t i f i e d as being p a r t i c u l a r l y s t r e s s f u l within the larger population of dying patients. While there i s a common assumption that young-middle aged dying patients are inherently s t r e s s f u l and as a r e s u l t d i f f i c u l t to nurse, there has been no independent study of nursing issues as r e l a t e d to t h i s population. The nurses who care .for these patients are the focus of t h i s research study. There i s s u f f i c i e n t evidence i n the l i t e r a t u r e to conclude that they do encounter d i f f i c u l t i e s and therefore would benefit from a body of knowledge that can f a c i l i t a t e recognition of t h e i r special challenges and help them to prevent burnout. 30 Chapter Three - Methodology The following chapter describes the methodology used i n completing t h i s research study. I t outlines the study design, sample selection, data c o l l e c t i o n and analysis procedures, as well as e t h i c a l considerations and l i m i t a t i o n s . Research Design "Factor-searching studies are the most basic that can be done" (Diers, 1979, p. 102). They include d e s c r i p t i v e , exploratory and formulative study designs (Diers, 1979, p. 100). These designs are appropriate "when the problem i s to describe, or name the parts of, a given s i t u a t i o n or event" (Diers, 1979, p. 100). P o l i t and Hungler (1991) note that descriptive studies "do not focus on relationships among vari a b l e s , " rather "their purpose i s to observe, describe, and document aspects of a s i t u a t i o n as i t n a t u r a l l y occurs" (p. 175). Thus, a descriptive design i s the method of choice for t h i s research study. A descriptive study functions to c l a s s i f y or conceptualize situations "when there i s no usable information about a p a r t i c u l a r phenomenon avai l a b l e " (Diers, 1979, p. 100). F i e l d and Morse (1985) concur that descriptive studies are appropriate for addressing the question, "What i s t h i s 31 phenomenon?'" (p. 9). The use of the d e s c r i p t i v e study design i s appropriate i n l i g h t of the i d e n t i f i e d gap i n the l i t e r a t u r e with respect to the experience of the nurse caring for young-middle aged dying patients. Sample Selection Convenience sampling was used to se l e c t research p a r t i c i p a n t s . Although the research proposal predicted that the sample would consist of 20 subjects, 14 interviews were completed because of time r e s t r i c t i o n s . Because the process of analysis was on-going with the data c o l l e c t i o n , the researcher was able to observe a richness i n the data i n d i c a t i n g that the categories derived from the conceptual framework had been well addressed. Thus, the researcher f e l t that a sample of t h i s s i z e , though representing a l i m i t e d number of experiences, would s t i l l be s u f f i c i e n t to achieve the desired study r e s u l t s . A l l of the participants met the following c r i t e r i a : (1) be a registered nurse working i n oncology, and (2) have cared for a young-middle aged patient dying of cancer within the past two years. Letters of introduction to p o t e n t i a l p a r t i c i p a n t s (see Appendix A) explaining the study were given to Nursing Unit Managers at the B r i t i s h Columbia Cancer Agency (BCCA) for d i s t r i b u t i o n during s t a f f meetings. 32 Additio n a l l e t t e r s were placed i n each nurse's u n i t mailbox. In addition, copies of the l e t t e r were mailed out to the p r o v i n c i a l membership of the B.C. Oncology Nurses Group. However, a l l of the nurses who volunteered to p a r t i c i p a t e were employed at BCCA. ; Interested nurses informed t h e i r Unit Manager who kindly l e t the researcher know on which days these nurses would be working. Some nurses volunteered d i r e c t l y a f t e r discussion with the researcher. At leas t two interviews were conducted on a given day, thus not a l l nurses who had i n i t i a l l y expressed an in t e r e s t to t h e i r manager were able to p a r t i c i p a t e . The i d e n t i t y of those nurses who d i d p a r t i c i p a t e was known only to the researcher. A l l subjects signed a consent form (see Appendix B) before being interviewed. Basic demographic information with respect to the subject's age, nursing education and experience was also obtained (see Appendix C). Sample Description The study sample consisted of 14 s t a f f nurses, including two male nurses, employed at the BCCA. These nurses d i f f e r e d i n terms of age, education, and nursing experience. Nine of the subjects were 31-40 years old, three subjects were 20-30 years old, and two subjects were over 51 years old. Thus, 85% of the sample was 33 within the age range ( i e . 20-45 years old) of the patient population targeted i n t h i s study. The educational backgrounds of the nurses interviewed ranged from preparation at the diploma l e v e l to preparation at the master's l e v e l . Nine nurses ( i e . 64%) were prepared at the diploma l e v e l ; four nurses ( i e . 29%) were prepared at the bachelor's l e v e l ; and one nurse ( i e . 7%) was prepared at the i master's l e v e l . In addition, some of the subjects reported having completed some sp e c i a l t y t r a i n i n g i n the areas of o b s t e t r i c s , p e d i a t r i c s , ICU/emergency nursing, and p a l l i a t i v e care. The sample represented a range of nursing experience with the t o t a l number of years i n nursing ranging from two to 30 years. The average length of time i n nursing was 10 years. The number of years worked i n oncology ranged from two to 14 years, with the average length of time s p e c i a l i z i n g i n oncology nursing being s i x years. Data C o l l e c t i o n Procedures I Data c o l l e c t i o n was completed through guided interviews of approximately one hour i n length. A guided interview (see Appendix D) was used because "this technique ensures that the researcher w i l l obtain a l l information required (without forgetting a 34 question), while at the same time permitting the informant freedom of responses and description to i l l u s t r a t e concepts" ( F i e l d & Morse, 1985, p. 67). The interview guide was designed s p e c i f i c a l l y for t h i s study from the themes which emerged from the conceptual framework. I t was reviewed by thesis committee members before being used. Twelve of the interviews were conducted i n o f f i c e s or s t a f f rooms at BCCA. These nurses were allowed time during t h e i r work s h i f t to p a r t i c i p a t e i n the interviews. The remaining two interviews were conducted at the subjects' homes at mutually convenient times for subject and researcher. A l l interviews were tape recorded to ensure accuracy of data c o l l e c t i o n . Two of the subjects expressed concerns about i d e n t i f y i n g s p e c i f i c patients by name during the taped interviews. They were reassured, as stated on the consent form, that i n i t i a l s only would be used i n t r a n s c r i p t i o n of the interviews, and that the interview tapes would be erased following t r a n s c r i p t i o n . Aside from t h i s concern, subjects appeared to speak f r e e l y and comfortably during the interviews. Subjects responded d i r e c t l y to the interview guide questions, as well as digressing to discuss any aspects of t h e i r nursing experiences that they f e l t were relevant to the interview. The subjects 35 a l l took advantage of the opportunity to add any information at the conclusion of t h e i r interview that they f e l t should be included i n the discussion. Data Analysis The following categories, based on the conceptual framework for t h i s study, formed the basis for the i n i t i a l process of organizing and analysing the c o l l e c t e d data: sources of stress i n nursing young-middle aged dying patients; strategies for coping with the s t r e s s ; p o s i t i v e aspects of caring for these patients; and making sense of the experience. Thus, the conceptual framework as developed from assumptions drawn from the related l i t e r a t u r e and the researcher's experience formed the basic structure d i r e c t i n g the an a l y t i c process. , Within t h i s basic structure, an inductive approach was taken i n analysing the interview data. During the interviews, the researcher l i s t e n e d c a r e f u l l y to the ideas and themes emerging and compared these with previous interviews questioning what might have been happening for subjects who re l a t e d s i m i l a r and d i s s i m i l a r experiences. As noted by Diers (1979) "the "processing" of data takes place i n the investigator's head l i t e r a l l y " (p. 115) and "a self-conscious monitoring of one's own thinking process i s maintained" 36 , (p. 115) during data processing and analysis. Thus, each interview was b u i l t on those preceding i t , with the researcher using the i n i t i a l analysis of preceding interviews to guide the approach and questions i n subsequent interviews. At the completion of the interviews, the researcher l i s t e n e d to each of the interview tapes making notes to i d e n t i f y p a r t i c u l a r l y pertinent and i n t e r e s t i n g subject comments with respect to the categories i d e n t i f i e d from the conceptual framework. Each tape was then l i s t e n e d to a second and sometimes t h i r d time to transcribe these sections. Following t h i s each tape was erased. The data from these transcribed tapes was then sorted and organized into the categories i d e n t i f i e d i n the conceptual framework. The categories were then reworked by subdividing or combining categories. For example, the category of "sources of stress i n nursing young-middle aged dying patients" proved to be too general. It was subdivided to acknowledge the importance expressed during the interviews of the family as a source of stress during the interviews. The reworking of categories was repeated " u n t i l a set of categories [evolved] which [did] encompass a l l the data meaningfully" (Diers, 1979, p. 117). "Reworking the categories over and over constitutes the major 37 portion of data analysis for t h i s kind of f a c t o r -searching study" (Diers, 1979, p. 117). F i n a l l y , the researcher integrated insights from a l l of the interviews into a description of the nurse's experience i n caring for young-middle aged dying patients. E t h i c a l Considerations In order to protect the r i g h t s of a l l subjects, permission to carry out the proposed study was obtained from the Ethics Committee of the University of B r i t i s h Columbia. A l l subjects received a copy of the l e t t e r of introduction providing basic information with respect to the purpose and nature of the research study. P r i o r to the interview, each subject was required to sign an informed consent. Limitations The primary l i m i t a t i o n of t h i s study l i e s i n the fact that t h e o r e t i c a l sampling was not used. Dier, (1979) observes that "the i d e a l i n factor-searching studies i s the Glaser and Strauss method of gathering data, beginning to construct concepts, sampling t h e o r e t i c a l l y , gathering more data and so on u n t i l the concepts are f u l l y saturated" (p.111). Because of time r e s t r i c t i o n s a smaller sample was used without t h e o r e t i c a l sampling, thus s a c r i f i c i n g some of the 38 richness and subtlety of the concepts (Dier, 1979, p. 111). Future study to further develop the categories could increase t h e i r p r ecision and s e n s i t i v i t y as other groups of data are c o l l e c t e d . In addition, study findings are not generalizable beyond the group studied. G e n e r a l i z a b i l i t y i s l i m i t e d by the f a c t that the subjects are representative of only one i n s t i t u t i o n . Summary A descriptive research design was used to c o l l e c t data f o r t h i s study. Fourteen subjects were interviewed, using a semi-structured interview guide, about t h e i r experiences nursing young-middle aged dying patients. The tapes were reviewed and the information was organized into categories as i d e n t i f i e d i n the conceptual framework. I 39 Chapter Four - Presentation of Findings Chapter four summarizes and describes the data obtained i n 14 interviews with nurses from the B.C. Cancer Agency. The discussion i s organized around the following categories: general responses to the experience; comparisons with older patients; the family as a source of stress; other stressors; coping with the stress; p o s i t i v e benefits; making sense of i t . These categories and t h e i r sub-categories are d i r e c t l y r e l a t e d to the conceptual framework from which the interview guide was developed. The nature of the data obtained through the interviews required that sub-categories be created within the categories of 'stressors' and xcoping with the s t r e s s . ' In addition, the subjects discussed the family as a source of stress to such an extent that i t required the creation of a separate category i n the presentation of the findings. An analysis of findings follows i n chapter f i v e . General Responses to the Experience Each of the 14 interviews opened with the subjects being asked to describe, i n general, what the experience of nursing young-middle aged dying patients has been l i k e for them. While the responses d i f f e r e d between subjects, they a l l r e f l e c t e d the impact that t h i s patient group has on them. As one subject 40 described, "very overwhelming, they stand out i n my mind. I take them home i n my mind an awful l o t when I don't want to." Several of the subjects described the experience as d i f f i c u l t and p a i n f u l . One subject stated that " i t ' s been o v e r a l l very d i f f i c u l t , very d i f f i c u l t . " While another subject remembered that "there was a l o t of pa i n f u l times with i t . There was a l o t of grieving." A v a r i e t y of factors were i d e n t i f i e d which the subjects attributed to the pain and d i f f i c u l t i e s they experienced i n nursing these patients. One subject described that she found the experience d i f f i c u l t because she had never nursed t h i s patient group before. She said, "It was very hard for me to deal with, and my i n i t i a l reaction was to run away from i t because I didn't want to face i t . " Another subject found her feelings of helplessness made nursing these patients d i f f i c u l t . A t h i r d subject described f e e l i n g inadequate and uncomfortable recognizing that while she was healthy her patients were "facing t h i s h o r r i b l e , h o r r i b l e burden." In addition, patients with young families were i d e n t i f i e d as being d i f f i c u l t to nurse. As one subject stated, "when they have fa m i l i e s , and they are young families i t just tears your heart out and you want to help them even more." 41 Several of the subjects related the age of the patient to the d i f f i c u l t i e s they experienced i n nursing them. For example, one subject stated that i t ' s "more s t r e s s f u l because the patients are young." Another observed that "especially the closer you get to the bottom rung of that ladder, the younger people, I f i n d i t very frightening." Further, one subject stated that "whenever I see an age under what seems to be a reasonable l i f e span, before I even enter the room I f e e l heavy hearted . . . most of the time i t ' s pretty sad. " While feelings of pain and helplessness were cen t r a l to most of the subjects' i n i t i a l responses with respect to t h e i r experience nursing young-middle aged dying patients, there was also considerable discussion of the rewards and benefits of t h i s type of nursing. For example, one subject stated that " i t ' s d i f f i c u l t i n c e r t a i n ways but i t ' s also the most challenging and the most rewarding." Despite the d i f f i c u l t i e s and pain they experience the subjects indicated that they choose to nurse these patients. As one subject stated, "I would probably go for that patient even knowing that i t s going to be hard because even though i t s d i f f i c u l t i t can be the most rewarding kind of nursing too." Another subject agreed, "It's a p r i v i l e g e to be involved with these people. I jump at the chance." 42 C l e a r l y , the subjects described nursing young-middle aged dying patients as a very d i f f i c u l t yet rewarding experience. Comparisons With Older Dying Patients Following a general discussion of the subjects' experiences nursing young-middle aged dying patients, the subjects were asked to compare t h i s patient group with the older patients that they nurse. A v a r i e t y of differences were i d e n t i f i e d . The subjects emphasized differences i n the ways that these two patient groups face t h e i r i l l n e s s e s and deaths, differences i n the family structure and involvement, and differences i n the approach and r o l e of the nurse. A l l of the subjects viewed older patients as being more accepting of t h e i r i l l n e s s e s and eventual deaths. As one subject stated, "with an older population . . . t h e y ' l l say something l i k e I've l i v e d my l i f e to the f u l l e s t , I just don't want to be i n pain now and i t doesn't matter i f I go now, things are f i n e . " This acceptance was linked with the idea that the older patient has l i v e d a long and f u l l l i f e on which they can r e f l e c t with some s a t i s f a c t i o n . For example, one subject said, "with an e l d e r l y person they can t a l k about what a good l i f e [they've] had and trie experience that they've had and they've something to draw on." 43 The older patient's acceptance of i l l n e s s and death was also seen to be linked to having faced d i f f i c u l t i e s and c r i s e s during t h e i r l i v e s : I think the older people generally confront t h e i r eventual death i n a d i f f e r e n t way than a younger person i s going to just because they have had more l i f e experiences to draw on and they've probably had more c r i s e s i n t h e i r l i v e s where they've had to cope and get through . . . some of these older people have had children that have died already. And f i n a l l y , t h i s acceptance of death on the part of the older patient was described i n terms of viewing these deaths as "natural." As one subject stated, "It's just something that i s natural, you know, we die, that's just part of l i f e . " In contrast to describing the older patient as accepting of death, the subjects described the younger patient as frequently having d i f f i c u l t y accepting t h e i r i l l n e s s and eventual death. One subject observed that "they are probably more angry, more intense than somebody who's older," while another subject observed that " i t s a l o t harder for them to l e t go." Several of the subjects discussed the importance of dealing with c r i s e s and having s i g n i f i c a n t l i f e experiences i n enabling the older patient to accept death. In comparison, they also discussed the e f f e c t that the lack of these experiences has on younger patients. As one subject observed, the younger patients "need more support because they've not 44 necessarily gone through c r i s e s already." Another concurred that "there i s n ' t that long range of experiences that there i s for other people i n an older age group that seems to be a source of great comfort to them." More s p e c i f i c a l l y , one subject noted that i t was the development of a l i f e philosophy or p a r t i c u l a r b e l i e f system that guided the older patient through i l l n e s s and death. Not having had the time to e s t a b l i s h such philosophies or b e l i e f s leaves the younger patient without "the same kind of equipment" to face t h e i r i l l n e s s and death. In comparing the older and younger patient groups as they face death due to i l l n e s s , several subjects examined the r o l e of the patient within t h e i r family. As one subject noted, "with an older person, i t s just adult c h i l d r e n or no children available or there's not much family involved." Another subject observed, "An older person they may have a spouse but . . . I guess they're not needed as much i t seems to me by t h e i r f a m i l i e s . " In comparison, subjects i d e n t i f i e d the younger patient as having a much d i f f e r e n t r o l e i n and structure to t h e i r family. This was repeatedly viewed as a key factor i n the difference between the way i n which younger and older patients face i l l n e s s and death. For example, one subject observed that younger 45 patients are l i k e l y to be "leaving behind an active spouse and maybe there's f i n a n c i a l concerns, c h i l d r e n , and I f i n d that they can't l e t go." Another subject said: Its the prime of your l i f e . . . you get your education, you get married, you s t a r t your family, you buy a home, you do a l l t h i s s t u f f and then when something l i k e cancer s t r i k e s , . . . i t just throws everything o f f . . . when you're 28 you're going hold i t here, I've hardly l i v e d . Subjects described how estab l i s h i n g a family and career leaves younger patients f i g h t i n g hard to beat t h e i r disease rather than accept i t . Subjects also described the e f f e c t that the younger patients' families have on them and t h e i r nursing care. One subject said: I think that's the biggest difference between the older people and the younger people, that I become much more involved with the families than with older people but perhaps that's because they are present, they are much more present . . . so i t ' s a r e a l f i g h t not just for the patient but f o r the families and the nurse as well. Several subjects compared the needs of younger with older patients and t h e i r respective nursing care demands. One subject noted that the younger patients generally have more questions about t h e i r disease and treatment than older patients. As a r e s u l t she f e l t that she needed to "be more up on [her] c l i n i c a l knowledge." A second subject agreed, "I tend to think they have a l o t more questions about things . . . when 46 you're 85 you're not questioning i t so much." S i m i l a r l y , another subject said: I think they can be a l i t t l e intimidating i f they're young professional kind of people that are s t i l l i n the work force and often they're quite well read about t h e i r condition and the treatment and a l l that and I think i n the beginning they can be quite intimidating and you have to get past that to develop a rapport. One subject highlighted the issue of balancing therapeutic with s o c i a l relationships i n developing a rapport with the younger patient group. F i n a l l y , the subjects compared how they are affected by nursing these patients. One subject said, "The younger group, i t ' s harder . . . harder for both nurse and patient." Another subject echoed that "emotionally i t ' s the hardest." A t h i r d subject described that she found the death of a younger patient much harder to get over than the death of an older patient. She noted, "I can r e c a l l the faces of every one of these young people that have died." Thus, subjects i d e n t i f i e d several differences between younger and older patient groups, both i n terms of the way i n which the patients approached i l l n e s s and death, and the way i n which the subjects approached providing t h e i r nursing care. 47 Family As A Stressor In discussing the d i f f i c u l t i e s and stresses experienced i n nursing the young-middle aged dying patients, a v a r i e t y of factors were i d e n t i f i e d around the patients' f a m i l i e s . As discussed i n the previous section comparing the younger and older patient groups, subjects found the families of younger patients to be both more complex i n structure and more involved i n the care of the patient. This was discussed at some length when subjects were questioned about the stress they experienced when nursing t h i s patient group. The structure of the younger patient's family was often distinguished simply by the number of family members involved. As one subject observed, "You usually have more family members to deal with." A second subject agreed, "You end up nursing a l o t more people when you have a younger patient." And a t h i r d subject described "families [as] one of the most d i f f i c u l t things because i t i s a complicated s i t u a t i o n with a younger person." The family was also described i n terms of the ages and roles of i t s members. The younger patient's family frequently includes dependent children, spouses, and parents. In addition, several subjects described having to address the needs of these family members as 48 well as the needs of the patient. As one subject stated: You go into a room thinking OK, we need to f i n d out about t h i s patient's family. Do they have kids? Do they have a partner? How i s everybody i n the family? There's a l o t of psycho-social needs, a l o t of l i s t e n i n g , a l o t of s i t t i n g and l i s t e n i n g . Another subject observed: It means a spouse, sometimes very young c h i l d r e n then i t s very emotional from t h e i r point of view and that makes i t d i f f i c u l t from a nursing point of view too — the fam i l i e s . You're not dealing with the dying person, you're dealing with the family on top of i t . Meeting the needs of the family was viewed as d i f f i c u l t . One subject described the fin e balance, between providing the family with privacy and knowing when to step i n and o f f e r help. Another subject brought up the issue of not knowing the family h i s t o r y : You have to wade your way through a l l those protective people to get to the patient and you're often not nursing just the patient you're nursing the e n t i r e family and i f nothing e l s e , timewise that's very consuming and emotionally too. You're d i v i d i n g yourself up i n that many more pieces. And everyone brings i n a whole bag f u l l of emotional family h i s t o r i e s . You know, the supportive brother who's s i t t i n g there holding her hand may be someone that she hasn't seen for years and they've had a major disagreement and they: haven't spoken and yet you don't know that. You don't know the history. Responding to the needs and reactions of the ; patients' families was seen as being d i f f i c u l t . In p a r t i c u l a r , subjects discussed these d i f f i c u l t i e s i n terms of dealing with the patients' child r e n . 49 Dependent childre n were viewed as a source of stress by the subjects. One subject i d e n t i f i e d dependent chi l d r e n as a great source of stress for the patient, the nurses, and the medical s t a f f . Another subject remembered a s i t u a t i o n which she f e l t was made more s t r e s s f u l because of the children involved. Some of t h i s stress she linked to not knowing what to say to the children. A t h i r d subject stated: I guess the hardest part i s there i s no r e a l information out there about when to involve the kids. The family doesn't know when to involve the children. How do you t e l l the children? The patients' parents were also viewed as a source of stress by the subjects. The pain and helplessness of these parents was f e l t keenly. One subject said, "I often think i t must be the most devastating thing i n the world to see your c h i l d die, even i f your c h i l d i s an adult." A second subject agreed, "Parents l o s i n g a c h i l d , a young adult c h i l d , there seems to be some general awful pain that's involved i n that's just : beyond." While a t h i r d subject lamented, "I have a hard time looking at parents who are l o s i n g a c h i l d . I can't begin to empathize with them. What can you do for them? Not much r e a l l y . " In describing the stress experienced when dealing with the families of younger patients, the subjects talked about both the t e r r i b l e pain that the parents f e e l as well as the nature of the involvement of 50 parents i n the care of the patient. Subjects described r o l e changes where patients were seen to r e l i n q u i s h c o n t r o l , while t h e i r parents assumed greater co n t r o l over t h e i r care. As one subject expressed, "They're l i k e us before they get sick and then a f t e r they get sick they seem to regress and the sicker they are the younger they become and the more t h e i r parents take a r o l e . " Another subject noted, "I haven't ever seen parents t r y to promote the independence and control again. They take over to make i t easier." This r o l e reversal was seen as creating some of the d i f f i c u l t i e s the subjects experienced both i n supporting the younger patients and i n supporting t h e i r parents. One subject described the following s i t u a t i o n : We had a young man recently where I wanted to go i n when he was alone and give him a chance to t a l k but he had a very domineering kind of mother who didn't leave him alone very often and had a l o t of anger and bitterness. S i m i l a r l y , another subject remembered a patient who was able to t a l k to the nurses about death and dying but when the family came i n "he wasn't able to t a l k about i t anymore." The subjects' f r u s t r a t i o n with not being able to openly communicate with the patients was compounded by the protective and sometimes adversarial responses of the families. As one subject stated: L o g i c a l l y , i n the back of your mind you understand that's just the way she i s , and e s p e c i a l l y being a 51 parent you understand how she must f e e l and at the same time i t s d i f f i c u l t to l i s t e n to these curses. In acknowledging the d i f f i c u l t i e s experienced i n nursing young-middle aged dying patients, subjects agreed that many of these d i f f i c u l t i e s arose from the involvement of the patients' f a m i l i e s . As one subject stated, "I f i n d i t s very s t r e s s f u l on the nursing s t a f f . You have to deal with i t d i f f e r e n t l y , i t s a d i f f e r e n t approach." And, as cautioned another , subject, "It's something that you have to learn how to deal with. If you don't, you burn out." Other Stressors System stress. While subjects discussed at length t h e i r d i f f i c u l t i e s i n dealing with the families of young-middle aged dying patients, they also i d e n t i f i e d several other stressors. Stressors were i d e n t i f i e d around general nursing and f a c i l i t y issues. These; are discussed i n the following category — vsystem s t r e s s . ' Approximately half of the subjects described time management d i f f i c u l t i e s when asked about the stressors they experienced i n nursing t h i s patient group. As one subject lamented, "It's the same o l d thing i n nursing, there's no time." Another subject revealed, "I f i n d myself becoming very scattered and I f i n d myself becoming very angry with myself because I'm not able to spend the time that I want to." An a d d i t i o n a l 52 consequence of t h i s time management issue was i d e n t i f i e d by another subject. She talked about the d i f f i c u l t y she has i n p r i o r i z i n g her time between the patient's technical needs and xother' needs. "Unfortunately," she said, "the technical thing ends up being the p r i o r i t y . . . you don't have a choice." This focus on technical nursing was c e n t r a l to the f r u s t r a t i o n several subjects described with respect to caring for the patients who required p a l l i a t i v e rather than curative care. At the time that the interviews for t h i s study were conducted the lack of a treatment mandate with respect to providing p a l l i a t i v e care was i d e n t i f i e d as a fundamental factor i n t h i s dilemma: Well, there i s r e a l l y no p o l i c y or straightforward guidelines because t h i s i s a treatment centre. When a patient becomes p a l l i a t i v e , where should they go? What happens? Another subject i d e n t i f i e d a lack of physician support for the provision of p a l l i a t i v e care at the agency. She noted that "sometimes the physicians here just don't understand, they don't understand our f e e l i n g s . " In addition to the perceived lack of agency and physician support for p a l l i a t i v e care, another subject i d e n t i f i e d the lack of a knowledge base to guide nurses "dealing with these patients who are dying." She noted: We don't have the education behind t r e a t i n g p a l l i a t i v e patients . . . and i f i t i s something we are going to be going into we need the t r a i n i n g 53 as well. [We need] to know how to deal with the patients properly and to know how to deal with our own feelings as a group and as i n d i v i d u a l s . Another subject voiced f r u s t r a t i o n with not f e e l i n g confident i n her a b i l i t y to t a l k to the chil d r e n of dying patients. She suggested, "Maybe i t ' s because I don't have children and I f e e l that I don't have enough c r e d i b i l i t y and I'm not q u a l i f i e d . . . to t a l k to a c h i l d . " Regardless, she i d e n t i f i e d that she f e l t i l l - e q u i p p e d to deal with t h i s part of her patient care. She revealed that t h i s stress i s heightened on weekends and night s h i f t s when she needs to "hold o f f u n t i l [she can] get the expert because i t ' s such a f r a g i l e s i t u a t i o n . " F i n a l l y , i n discussing system stressors, one subject described her f r u s t r a t i o n with the lack of! patient/family follow up. She i d e n t i f i e d a strong desire to "fi n d out how that family i s coping. What happened to the kids, are they OK?" She said she f e l t things are " l e f t open" and finds t h i s lack of closure to be very f r u s t r a t i n g . I d e n t i f i c a t i o n . A l l of the subjects discussed i d e n t i f i c a t i o n when asked about the stressors they encountered i n nursing young-middle aged dying patients. This was true f o r subjects who were i n the young-middle aged group and for subjects who were i n older age groups. Identifying 54 with these patients was frequently described as a factor which makes t h e i r nursing care d i f f i c u l t . In addition, many subjects revealed that t h i s i d e n t i f i c a t i o n a f f e c t s how they viewed t h e i r own l i v e s and f a m i l i e s , as well as how they i n t e r a c t with the patients. A strong sense of i d e n t i f i c a t i o n with the patient was a factor i n the d i f f i c u l t i e s subjects experienced when nursing t h i s patient group. For example, one subject described a s i t u a t i o n where she i d e n t i f i e d very strongly with the patient. As a r e s u l t , she f e l t that she "wasn't able to be very h e l p f u l from a professional l e v e l simply because i t d i d a f f e c t [her] so much because [she] was looking at [her] own l i f e . " A second subject described being so profoundly affected by i d e n t i f y i n g with c e r t a i n patients that she could not nurse them: When I was a new mum with a new baby i t was very d i f f i c u l t . I found i t t e r r i b l y t r a g i c every time I heard about a mother who was breast feeding her c h i l d and found a lump i n her breast and then there they are with us. It was just more than I could stand sometimes and so I would choose to stay away from those patients for a while. Another subject described being p a r t i c u l a r l y affected by i d e n t i f y i n g with "the s i g n i f i c a n t other who's being l e f t behind." She described f e e l i n g "an i n c r e d i b l e amount of pain" and being "very, very concerned about them." F i n a l l y , a t h i r d subject summarized, "I always 55 f i n d i t r e a l l y hard, that age group, e s p e c i a l l y hard because I i d e n t i f y so much because of . . • . what's going on i n [their] l i v e s . " While most of the subjects ( i e . 85%) were i n the same age group as the targeted patient population, some of the subjects interviewed ( i e . 15%) were i n older age groups. These subjects described i d e n t i f y i n g with the patients' parents. As one subject noted: I think again being a parent helps. I can more e a s i l y think i n terms of how they might f e e l than how t h i s k i d might f e e l , who I usually think of as a c h i l d . This subject i d e n t i f i e d the young-middle aged male patients with her/his son. The experience of nursing these patients had a s i g n i f i c a n t impact on t h i s subject: There but for the grace of God can l i e my son . . . i t ' s almost l i k e a physical punch somewhere i n your body that you have to get over to sort of r e l a t e to them on a patient-nurse basis. In i d e n t i f y i n g with t h e i r patients, the subjects described how they put themselves i n the patients' places and projected how they and t h e i r families would be affected. For example, one subject said: This could be me, t h i s could be my husband, I could be facing, you know t r y i n g to prepare my childr e n to be without me. And I think that has a f a i r l y powerful tug. Another subject asked, "How would I be coping i f that was me?" 56 Another aspect of i d e n t i f y i n g with t h i s patient group was the anxiety and fear described by most of the subjects. One subject stated: It's too close to home, you know a 32 year o l d woman with two l i t t l e kids and when you i d e n t i f y t e r r i b l y and i f i t ' s something that I'm p a r t i c u l a r l y t e r r i f i e d of getting myself then . . Another subject described the paranoia she shared with her peers as a r e s u l t of patient i d e n t i f i c a t i o n : I tend to think i t ' s made us a l l r e a l l y r e a l l y paranoid. I mean we a l l go around thinking what's t h i s ache, what's t h i s pain, because we've seen i t , we see i t a l l up here. Thus, i d e n t i f i c a t i o n with the young-middle aged dying patients affected the way i n which subjects viewed t h e i r patients and themselves and was described as a factor i n the d i f f i c u l t i e s they experienced i n nursing these patients. Helplessness, sadness, g r i e f . In discussing the stress they experience i n nursing the young-middle aged dying patients, a l l of the subjects described feelings of helplessness and g r i e f r e l a t e d to the sadness of the patients' s i t u a t i o n s . Subjects r e c a l l e d these situations and t h e i r feelings v i v i d l y . As one subject observed, "With older people I can put the memories out of my mind but these stay. Even thinking about i t I can r e c a l l the emotions." Another subject asked, "How do you deal with [ i t ] and go home . . . and forget about i t ? " 57 Feelings of helplessness were ce n t r a l to the subjects' discussions of t h i s nursing experience. One subject stated, "You want things to be d i f f e r e n t f o r them and you can't make the difference that you want to make." S i m i l a r l y , another subject observed: Sometimes I just get the sense that they're looking at me and they want something that I do not have, and there's no way, and these eyes are looking at me for something and I look back and the message i s I can't do anything e l s e . These feelings of helplessness affected how the subjects approach the care of these patients. As one subject r e c a l l e d : I t makes coming onto the ward very d i f f i c u l t and b a s i c a l l y dreading having to look a f t e r him because there was nothing you could say or do or supports that you could provide him with that would help his behaviour and help him to accept his death and help him deal with i t r i g h t to the end. Very helpless. In addition, t h i s subject i d e n t i f i e d l i m i t a t i o n s within the system. Another subject referred to these l i m i t a t i o n s when describing her feelings of helplessness: It was very f r u s t r a t i n g , there was c l i n i c a l nurse s p e c i a l i s t s that came, there was the chaplain, there was every resource that we could think of and nothing made a difference. The subjects t o l d s t o r i e s of in c r e d i b l e sadness when describing t h e i r feelings of helplessness. In fa c t , one subject described working at the cancer c l i n i c as l i k e "being i n the sad movies that they used to make . . you know, young people dying of cancer." 58 They r e c a l l e d these sad situations i n great d e t a i l . For example, one subject r e c a l l e d : And he looked at me l i k e that was the f i r s t time he'd a c t u a l l y thought of his wife dying, and i t was the saddest thing I'd ever seen and I just c r i e d for f i v e hours a f t e r . I t was just h o r r i b l e , the whole thing was just so h o r r i b l e and he just t o t a l l y collapsed and sort of sobbed and sobbed and that was i t . S i m i l a r l y , another subject r e c a l l e d : I remember t h i s husband came over and said, "There's something wrong with my wife." I knew that she had died, we were expecting her to d i e . And her l i t t l e two year old daughter was l y i n g on the bed saying, "mummy wake up, wake up" and they had a baby as well and she was holding the baby and they were v i s i t i n g from Toronto and didn't even have t h e i r family here. Another subject described how there were times when " l i t e r a l l y one t r a g i c , t r a g i c unbelievably t r a g i c story would end and somebody would die and a l l those feelings would l i n g e r and then there would be someone else who would be even more t r a g i c . " The subjects were profoundly affected by the , sadness and tragedy they experienced when nursing these dying patients and t h e i r f a m i l i e s . They described a v a r i e t y of responses. One subject stated, " A l l I have l e f t when I think about i t i s the g r i e f and the bitterness and the anger." Another subject described " d r i f t i n g i n [a] misery that just never seemed to end." A t h i r d subject talked about her feelings of g u i l t because she wasn't sick , she was "lucky enough to go home." 59 Two of the subjects described crying uncontrollably at sad movies. One subject r a t i o n a l i z e d , "Probably what i t i s , i s that I'm crying fo r a l l those patients that I never allowed myself to cry f o r . " S i m i l a r l y , another subject described: When I go to a sad movie and I'm crying, I'm not r e a l l y crying about what's going on i n the movie I'm just crying, but i t ' s OK to cry and to get i t out. Other subjects described having to hide t h e i r emotions and postpone t h e i r grieving while they are at work. For example, one subject said: Right now I have to do t h i s , and when I get home I ' l l have some time to be sad and do some of my own grieving. She observed that "at the time, no i t ' s not a good time to be grieving." Another subject agreed: It's a constant check. I'm always having to keep myself aware of where I am with these patients because i f you lose i t and you go over the edge sometimes i t ' s too l a t e to get i t back and then you end up just, well we've a l l been through i t , the grieving . . . you know I sometimes think oncology nurses are constant grievers i f you don't know how to deal with i t . Subjects i d e n t i f i e d several areas of stress associated with nursing the young-middle aged patients and t h e i r f a m i l i e s . They discussed stressors within the system such as issues around time management. I d e n t i f i c a t i o n with the patient or family was also discussed as a source of stress. F i n a l l y , subjects 60 talked at length about the stress of f e e l i n g helpless i n these unbelieveably sad and t r a g i c s i t u a t i o n s . Coping With the Stress As discussed above, the subjects described a v a r i e t y of stressors which make the nursing care of the young-middle aged dying patient d i f f i c u l t . A l l of the subjects talked at length about the d i f f i c u l t i e s that they have experienced. They i d e n t i f i e d the stressors and the coping strategies that they implement to deal with these stressors. System support. The system i t s e l f was recognized as a source of stress, however, a l l of the subjects i d e n t i f i e d ways i n which the system was involved i n providing much needed support. For example, one subject noted that "how. you deal with someone who's dying has a l o t to do with how comfortable and how supported you f e e l i n the system." Another subject agreed, "The more safe and the more support you get i n the environment when you're dealing with these kind of people the less that you kind of take i t home i n some other way." S p e c i f i c factors related to the system were ; i d e n t i f i e d as supportive. The r o l e of management was viewed as very important. One subject noted: Just having i t recognized, having the powers that be say, "yeah i t must be r e a l l y r e a l l y hard to do 61 that," that was h e l p f u l . Having i t recognized that we were doing a good job i n the middle of a d i f f i c u l t s i t u a t i o n . Another subject described the management as very supportive: They give you space to f e e l and they t r y to give you support so that you can f e e l , which i n a c e r t a i n sense can make i t harder. But, i t ' s better i n the long run. A t h i r d subject described how her manager supported the nurses having time to t a l k to each other during the d i f f i c u l t times. Another important factor i d e n t i f i e d for coping with stress was a team approach. One subject praised the agency for promoting team work and providing the range of professionals necessary to provide high q u a l i t y patient care. The success of the team approach was i d e n t i f i e d at the ward l e v e l as w e l l : We coped more as a ward and t r i e d to cope as a ward rather than i n d i v i d u a l l y because i t was exhausting. We could just take very short s h i f t s with him. Another subject stated, "I've learned that too over the years that you can't do i t alone, which i s a b i g part of what we're a l l about, i s a team." Subjects acknowledged the importance of t h e i r patient assignments both i n terms of choosing t h e i r own assignments and i n terms of the s i z e of t h e i r assignments. One subject f e l t that being able to choose her own assignment helped her to cope with the 62 stress of caring for d i f f i c u l t patients. She described a s i t u a t i o n where she de l i b e r a t e l y choose not to nurse a patient i n order to cope with the stress she was experiencing. Another subject stated that i t was easier to cope with the d i f f i c u l t patients when she could "balance" her patient assignment: It seems easiest to cope i f there i s one person and your assignment i s balanced or something l i k e that with a young person and older people or dying people and not-dying people, and i f the ward i n general doesn't have a l o t of sad situations where everyone i s f e e l i n g the p u l l and there i s n ' t anyone else to sort of take over i f you can't. In addition, the siz e of the patient assignment was viewed as an important factor i n coping with the stre s s . One subject observed that i t "makes a world of difference and that i t i s a c r e d i t to t h i s f a c i l i t y " that the nurse-patient r a t i o i s such that she f e l t able to provide q u a l i t y nursing care. Scheduled support meetings and debriefing meetings were also i d e n t i f i e d as interventions within the system which helped the subjects to cope with t h e i r s t r e s s . One subject stated: Caring for a patient with cancer that's i n your own peer group i s just so i n c r e d i b l y personally taxing, i f you didn't have some kind of help . . . we're pretty fortunate here having support group meetings and things l i k e that. If you didn't have people caring about you i n that respect, and i f that i s n ' t i n place i n nursing, I don't think I ' l l l a s t forever, I couldn't do i t . Another subject agreed that the support group meetings helped her to cope with her stress. In p a r t i c u l a r , she 63 acknowledged the ro l e of the c l i n i c a l nurse s p e c i a l i s t s at these meetings. She observed that " i t ' s r e a l l y h e l p f u l to t a l k to a fellow nurse and somebody who's maybe not as involved." A t h i r d subject r e c a l l e d having biweekly "stress debriefing meetings" l e d by the c l i n i c a l nurse s p e c i a l i s t during a period of intense s t r e s s . She remembered: It did help. We primarily talked about our young patients between that 20 and 40 year o l d age group. That's what comes up a l l the time. That's the consistent thing that people are f i n d i n g the most s t r e s s f u l and needing to t a l k about, and needing to to say "this i s what's happening." While most of the subjects described the support meetings as an important coping strategy, one subject cautioned that these meetings aren't always e f f e c t i v e . She noted that the nurses who are there for the d i f f i c u l t deaths may be on days o f f when the debriefing meetings take place. Stepping back. In addition to f e e l i n g supported by the system, subjects also described t h e i r own strategies for coping with the stress of nursing the young-middle aged dying patients. The importance of both p h y s i c a l l y and emotionally distancing themselves from these d i f f i c u l t nursing situations was echoed by a l l of the subjects. Subjects described distancing themselves i n a v a r i e t y of ways. Several subjects highlighted the 64 importance of taking breaks during t h e i r s h i f t s . One subject stated: You need a break. I f i n d that some of the newer nurses here don't do that and I warn them and I say look you've got to r e a l i z e your l i m i t a t i o n s or you're going to burn out r e a l quickly. Another subject described the p o s i t i v e benefits of her breaks: The way i t ' s set up here there's no fresh a i r . I need to get out at lea s t once a day, i f possible go out for lunch or whatever. I t i s just to get away from the building when I'm f e e l i n g p a r t i c u l a r l y scattered. A t h i r d subject stated she f e l t rejuvenated a f t e r her days o f f . She observed, "Sometimes I need a break, you know give me a break for a few days and I ' l l be OK." Thus, taking time away from the s t r e s s f u l s ituations was seen as h e l p f u l . This was made p a r t i c u l a r l y evident by the number of subjects who described having gone to part-time hours i n an e f f o r t to cope with the stress of nursing young-middle aged dying patients. As one subject observed: Part of my solution was to cut back to half time and I was f e e l i n g quite burnt out and maybe i f I continued to work f u l l - t i m e when maybe I wouldn't f e e l so healthy. A second subject agreed: Going part-time i s one thing. I t ' s made i t easier to be here, that was r e a l l y important for me because I love what I do, but doing i t f u l l - t i m e wasn't working for me anymore . . . I f i n d I don't take my work home with me anymore which i s r e a l l y important for me, I keep i t here. 65 Another subject noted that "working half time allows you to p u l l back because you can't develop a r e a l l y intense r e l a t i o n s h i p . " Further, another subject noted that by working part-time she comes back to her d i f f i c u l t patients with a fresh approach. In addition to distancing themselves from s t r e s s f u l situations by taking breaks and working part-time, subjects also emphasized the importance of choosing t h e i r patients, i n p a r t i c u l a r , choosing not to nurse c e r t a i n patients, as another way of distancing themselves. One subject observed the need "to recognize [your] own l i m i t a t i o n s , and to say i t ' s good, i t ' s not only OK to say I don't think I can work with t h i s person today." Another subject stated: I ' l l take them for three days . . . but as to coming back to them the next week, i f they're s t i l l l i v i n g I'd t o t a l l y remove myself from that s i t u a t i o n . I just sort of l e t i t be i n the background of my head. A t h i r d subject agreed: I wouldn't choose the same person over a long time because I know that i t would get me down eventually but I'd be happy to work or s p e l l o f f with other people. i Subjects not only protected themselves by choosing not to nurse c e r t a i n patients, they also t r i e d to protect each other from these s t r e s s f u l s i t u a t i o n s . For example, one subject r e c a l l e d : I was working with T and he had looked a f t e r t h i s person the previous s h i f t and didn't want to look a f t e r her because he f e l t very stressed out about 66 her because she's^ doing poorly. I was r e a l l y happy to look a f t e r her because I know at the same time that I want to do that for T because that's how we do i t . We look a f t e r each other. Another subject observed: My co-workers are so i n tune they recognize i t i n each other . . . and say " I think you need a break from that person today." I think i f someone's t e l l i n g me that, they're t e l l i n g me that f o r a reason. They're seeing something that I'm not. Maintaining an emotional as well as physical distance from s t r e s s f u l patient situations was also seen as an important coping strategy. Subjects described the d i f f i c u l t y of balancing the nurse-patient r e l a t i o n s h i p , and the need to constantly evaluate t h e i r roles as they become increasingly involved i n s t r e s s f u l s i t u a t i o n s . One subject described that i n these situations she begins to "care for [the patient] too much." Subjects described both consciously and subconsciously l i m i t i n g t h e i r emotional involvement with these s t r e s s f u l patients. For example, one subject described: Subconsciously I must prevent myself from becoming too absorbed i n that person dying that I don't consider myself cold at a l l . I'm r i g h t there f o r them but part of me must remove myself from i t and I do. In contrast, another subject described consciously l i m i t i n g her involvement: Sometimes you get to a point where I've f e l t that I'm kind of overly involved here and I'm becoming more than a health professional and I quite consciously p u l l back. 67 The need to l i m i t involvement was recognized by several subjects. As one subject stated, "I just t r y and be a nurse and not be a fr i e n d . " Another subject cautioned: You've got to be able to p u l l away too . . . every patient you deal with i t ' s not your experience, you're f a c i l i t a t i n g i t . It's not you so you have to to be able to p u l l away too . . . I've never gotten involved to the point where I'm going to see the patient on days o f f or whatever. F i n a l l y , two subjects described drawing " l i n e s " that helped them to l i m i t t h e i r involvement with the patients and families and maintain a professional distance. One subject stated, "The l i n e i s i f I take i t home with me, and i f I f i n d myself being r e a l l y i n e f f e c t i v e and too subjective i n taking care of them." The other subject observed: I always maintain that there's t h i s l i n e that oncology nurses have to walk along and you have to remain professional and s k i l f u l . . . and yet you have to be compassionate and you have to be caring. But, i f one out balances the other there's something wrong. Talking about i t . In addition to "stepping back," subjects i d e n t i f i e d "talking about i t " as the most h e l p f u l coping strategy i n dealing with the stresses of nursing the young-middle aged dying patient. One subject stated simply, "Talking about i t , that's probably the best I f i n d . " Subjects described t a l k i n g about these 68 s t r e s s f u l situations with other nurses and with non-nurses . Only one subject f e l t that there was an advantage i n t a l k i n g things out with someone other than another nurse. She r a t i o n a l i z e d : Talking to nurses can be good too, but sometimes i t helps to t a l k to other people about how you're f e e l i n g because then you don't get that just kind of nursing perspective. In contrast, the other subjects a l l described choosing to t a l k to other nurses for support. These subjects indicated that non-nurses would not be able to t r u l y understand the nature of the stress that they experience. As one subject noted, "I've stopped expecting people to understand because they can't. Why should they?" A second subject highlighted the lack of i n s i g h t of non-nurses into the nature of her work: With outside friends and family there's a genuine misunderstanding. They say why don't you quit or why are you doing t h i s then. You know, peers know why you're here and a l l that sort of s t u f f . Thus, the majority of subjects emphasized the importance of being able to t a l k to other nurses as a way of coping with t h e i r stress. One nurse noted that when you share with your peers "you're sharing a common si t u a t i o n and they can r e l a t e to what you're saying." Another subject agreed, "I f i n d that i t ' s best too t a l k to someone who knows exactly what you mean." 69 Other subjects agreed that i t was useful to t a l k about things with t h e i r peers at the Cancer Agency. However, several subjects also indicated that they were able to t a l k through t h e i r stress with nurses who worked i n other areas. For example, one subject observed: I t a l k about i t . We t a l k about i t amongst ourselves at work. I have nursing friends who work i n a l l d i f f e r e n t f i e l d s and we can share our s t o r i e s and t a l k about i t that way. Another subject agreed: j I don't think anybody can understand unless you work i n t h i s area or you're l i k e my nursing friends who work i n other hard areas. It i s i n t e r e s t i n g to note that two of the subjects, were married to nurses. They both described getting a l o t of support from t h e i r spouses which they att r i b u t e d , at le a s t i n part, to t h e i r being nurses. As one subject noted, "She c r i e s her eyes out while she's l i s t e n i n g to me but she's a nurse too so she understands." The other subject a t t r i b u t e d his spouse's a b i l i t y to be empathetic to the fa c t that she had experienced s i m i l a r s i t u a t i o n s . In describing the support they receive from t h e i r peers, two subjects noted that they s p e c i f i c a l l y looked to the c l i n i c a l nurse s p e c i a l i s t s for support. As one nurse described: > E s p e c i a l l y I saw the CNS as a great resource, I don't know she just had an easy rapport and she's a nurse and she's also a nurse who s p e c i a l i z e d f o r 70 the patients. But I've just found that t e l l i n g her what's happening and having her hear me out and then giving me advice, that's been r e a l l y b e n e f i c i a l . A second subject agreed, noting that she sought out the CNSs "just because they know, they know what's going on around here." Outside a c t i v i t i e s . In discussing t h e i r coping strategies, the subjects focused on the work environment. However, a l l of the subjects i d e n t i f i e d a c t i v i t i e s i n t h e i r personal l i v e s which they attributed to helping them deal with the stress of nursing young-middle aged dying patients. These a c t i v i t i e s appeared to f a l l within two d i s t i n c t groups. Subjects i d e n t i f i e d a c t i v i t i e s which helped them to relax and a c t i v i t i e s which required a high l e v e l of energy. Several subjects discussed coping with a highly s t r e s s f u l s i t u a t i o n at work by coming home and "relaxing." For example, one subject described: A f t e r a r e a l l y s t r e s s f u l day come home, have a bath. If I'm lucky, he's made me dinner. I ' l l maybe have a glass of wine to relax me. I t ' s pretty nice. S i m i l a r l y , another subject prescribed: I can't be dragging work home with me a l l the time. It's not going to help. Go home and have a bath instead. Go home and do something else to relax you. In contrast, other subjects described going home from s t r e s s f u l work situations and t r y i n g to cope by 71 increasing t h e i r a c t i v i t y l e v e l . For example, one subject stated, "I guess I just get myself so busy that I don't allow myself to s i t there and have i t soak i n , I just don't." A second subject agreed, "When you come home you have to be able to sort of get away from i t . . . just being busy and having other things i n your l i f e i s the best sort of remedy." S t i l l , other subjects i d e n t i f i e d that they coped with t h e i r stress through d i s t r a c t i o n . Two subjects described watching movies when they found work becoming s t r e s s f u l . One of them noted, "I want to watch a movie, a funny movie. I don't want to watch something sad. I don't want to watch a t h r i l l e r . " Another subject with a new baby described the importance of home l i f e i n coping with stress: Home l i f e , i t ' s just so much fun just going home seeing the new baby. That's almost an instant stress r e l i e v e r . Some days can be so bad here, barely dragging yourself out of the door here at 7:30 and you get home and there's your baby, and I have a l l the energy i n the world to play with her. Thus, subjects i d e n t i f i e d a v a r i e t y of coping strategies to deal with the stresses of nursing the d i f f i c u l t young-middle aged dying patients. These strategies included support from within the work environment, being able to step back and take breaks from these patients, t a l k i n g about t h e i r experience, and employing a c t i v i t i e s i n t h e i r personal l i v e s . 72 P o s i t i v e Benefits A f t e r discussing the stressors and the coping strategies that they implement when nursing young-middle aged dying patients, the subjects were asked to discuss why they continue to nurse these d i f f i c u l t patients. A l l of the subjects were e a s i l y able to i d e n t i f y p o s i t i v e benefits of t h i s area of t h e i r p r a c t i c e . Subjects described gaining i n s i g h t about themselves and about others. As one subject stated, "The kind of work that I do r e a l l y has an e f f e c t on how I see the world and my relationships with other people." Another subject observed, "I often think we learn a l o t more from them than they do from us." Several subjects talked about gaining a new perspective on what i s important i n l i f e through working with these patients. As one subject observed, "We take l i f e for granted a l o t and that's something I'm learning not to do." Another subject i d e n t i f i e d the need to "just appreciate the value of l i f e [because] we're healthy, no problems, doing the simple things i n l i f e , the things we take for granted." A t h i r d subject described gaining a new perspective through nursing these d i f f i c u l t patients: It gives me a kind of bigger perspective . . . you can't kind of minimize what's happening i n other people's l i v e s or i n your own. But sometimes i t makes i t easier to deal with the smaller things, l i k e i n the scope of things t h i s i s n ' t much of a big deal. 73 In discussing t h e i r new perspectives, several subjects talked about having a heightened awareness of t h e i r own mortality. One subject stated, "I just can't l i v e my l i f e with t h i s open-ended i n d e f i n i t e l i f e expectancy ahead of me because that's not how l i f e works." A second subject observed, "You think X I hope I'm here next year too,' and you know that i t ' s not a given anymore and I must admit I think about that more than I used to." A t h i r d subject cautioned: " L i f e i s n ' t long, l i f e i s short." This new perspective on l i f e also affected how subjects l i v e t h e i r l i v e s . For example, one subject noted that she i s less l i k e l y to wait for things to happen, s t a t i n g : It makes you think don't wait, don't wait for things i f you r e a l l y want something bad enough . . . don't wait u n t i l you're 65 because there are no guarantees. Another subject noted, "It makes you very thankful for what you do have r i g h t now." She added, "When something bugs me that I might have used to get worked up about, I won't bother now." A t h i r d subject described how her interactions with her family have changed through nursing these patients: I think that there's a l o t of p o s i t i v e s t u f f that i t ' s done for my r e l a t i o n s h i p with my husband and my family. It's made me appreciate my family much more because I see what these families go through. I remember a few times just phoning my mum and dad up to t e l l them that I love them because i t was, 74 you know, you are so affected by i t . I t ' l l e i t h e r make or break a family, and I've seen i t do both. Subjects i d e n t i f i e d t h e i r relationships with t h e i r patients and as very p o s i t i v e learning experiences. For example, one subject observed, " I am just always so amazed at the strength that these people have . . . that's the kind of insight I get out of i t , the kind of strength and courage the people have." S i m i l a r l y , another subject described being i n s p i r e d by the grace and d i g n i t y of these patients. She said, "It gives you hope." Again a t h i r d subject stated: I t c e r t a i n l y amazes me every time, the huge power of family and of love and support and more often than not we see families coming together with enormous strength that they never knew they had . . . there i s always something good that can come out of i t . A fourth subject said simply, " You get to meet very s p e c i a l people. There's something d i f f e r e n t . I don't know what i t i s but there i s something d i f f e r e n t about oncology patients." Some of the subjects i d e n t i f i e d the p o s i t i v e benefits that t h i s nursing experience has had on t h e i r s p i r i t u a l i t y . One subject observed: I'm challenged to think about my own b e l i e f s , philosophies, l i f e and death. And turn that over to my l i f e , my l i v i n g , my r e l a t i o n s h i p with my family. I'm more appreciative. Another subject stated: "It's done a l o t for the s p i r i t u a l side of me as well . . . i n my own f a i t h i t ' s 75 made me f e e l even more grounded than I ever have." A t h i r d subject stated: It's made me think a l o t more about s p i r i t u a l matters, which makes my l i f e f u l l e r as a consequence and I mean the whole concept of the i n d i v i d u a l deaths are often awful but the whole concept of death i s less frightening to me. F i n a l l y , subjects discussed the p o s i t i v e benefits of t h i s nursing experience i n terms of the challenges of caring for t h i s patient group. As one subject stated, "If I think"I r e a l l y have been h e l p f u l , yeah I f e e l great. It's that much harder [than nursing other patients] so i t ' s that much more of a t h r i l l . " Another subject i d e n t i f i e d enjoying the high l e v e l of i n t e n s i t y she experienced with these patients. A t h i r d subject summarized, "I seem to get a renewed energy. I f e e l better with my s k i l l s and everything going into i t . It's challenging and rewarding looking a f t e r them." Making Sense of I t While subjects were e a s i l y able to i d e n t i f y the p o s i t i v e benefits of t h i s often d i f f i c u l t nursing experience, most of them struggled when asked to explain how they "make sense of i t . " The magnitude of the s u f f e r i n g and sadness surrounding the dying of these young-middle aged patients proved to be very d i f f i c u l t for most of the subjects to come to terms 76 with. However, one subject was able to apply her own Ch r i s t i a n b e l i e f system to these nursing experiences: I'm a Ch r i s t i a n . I have a b e l i e f system. I believe that t h i s i s n ' t the end. I believe that there i s c e r t a i n l y something better. In that way I'm able to accept i t on that l e v e l . . . you have to make sense of i t somehow, how could you think otherwise. Other subjects i d e n t i f i e d that they f e e l more comfortable with the s i t u a t i o n when they know that the patient has a b e l i e f system. For example, one subject stated, "I do f i n d i t easier i f the person themself does have some sort of b e l i e f system or values or whatever and i s ready to accept i t for whatever reason themselves." S i m i l a r l y , another subject observed:, I t e l l myself that even i f I can't make sense of i t that there i s some sense somewhere and that i f anybody knows what sense i s made out of i t , i t ' s the person, the patient themselves, and that they are OK [even] i f the ones l e f t behind aren't. However, the majority of the subjects c l e a r l y had great d i f f i c u l t y making sense of the patient's experience. As one subject said, "I just don't think i t makes any sense. I don't have a way of coming to terms with that. I think i t ' s just very sad that t h i s kind of thing happens to people." Another subject agreed, "I do think about i t i n terms of why does t h i s have to happen. But I have never been able to make any sense out of i t . " Subjects struggled not having answers to t h e i r patients' questions. As one subject stated: 77 When people ask that question "why me?" "Why am I dying?" the best answer for me i s I don't know. And I don't know. I haven't r e a l l y figured that one out. You know i t ' s an honest answer. Subjects struggled not having answers to t h e i r own questions. One subject r e c a l l e d : I t made me face a l o t of things about my own f a i t h . I t made me face a l o t of questions that we ask that don't have answers. There was a l o t of misunderstanding on my part. I f e l t angry a l o t , just at the super-natural forces or God i f you want to put i t that way, as to why i t was happening. Why t h i s person, why not me? Si m i l a r l y , another subject struggled with his own questions: How can t h i s be allowed i f there i s a loving God who personally care for each of us. I just , how can t h i s be allowed. For me, everybody, t h i s was a vicious h o r r i b l e e v i l thing to put us through, poin t l e s s , senseless. Further, he described the e f f e c t that t h i s struggle has had on his s p i r i t u a l i t y : The only thing that r e a l l y i t has done for me, i t has made a very serious dent i n my r e l a t i o n s h i p with the Divine, because I think that maybe oncology nursing i n general sort of adds to that because I f i n d i t very d i f f i c u l t i f not impossible to say there i s a loving God who allows such su f f e r i n g to pass. I can't come to terms with that. While most of the subjects struggled with the large philosophical questions of l i f e and death, some subjects took f a t a l i s t i c approaches to dealing with the d i f f i c u l t patient si t u a t i o n s . One subject stated simply, "There's no rhyme or reason, i t could be any of us." Another subject observed: 78 It's going to happen. Sometimes i t happens through cancer, sometimes through car accidents . . . as long as they've been well informed, the nursing care has been great, the support's been good then they can s t a r t getting on with the other things . . . death i s just part of our being here for everybody. This approach provided the subjects with a way of making sense of the tragedies they witnessed. Thus, subjects i d e n t i f i e d a v a r i e t y ways to approach the experience of nursing the young-middle aged patients i n an e f f o r t to "make sense of i t . " Some of the subjects stated that they were unable to make any sense of these t r a g i c s i t u a t i o n s . However, other subjects f e l t able to deal with the tragedy by applying t h e i r own b e l i e f system or through b e l i e v i n g that the patients had strong b e l i e f systems. S t i l l other subjects took a f a t a l i s t i c approach to these d i f f i c u l t patient s i t u a t i o n s . Summary This chapter presents the data obtained from interviews with 14 nurses employed at the B. C. Cancer Agency. The interviews were based on the conceptual framework developed i n Chapter One, and thus, the data presented r e f l e c t s these themes. The data were categorized to r e f l e c t the r e l a t i v e importance of these themes as discussed during the interviews. These data categories examine the nurse's experience when caring 79 for the young-middle aged dying cancer patient. Subjects compared the issues involved i n nursing t h i s patient group with the issues involved i n nursing older patients. They discussed at length the stressors inherent i n t h i s nursing experience, with an emphasis on "the family" as a source of stress. In addition, strategies f o r coping with these stressors were i d e n t i f i e d . Subjects described the p o s i t i v e benefits that they gained through nursing these d i f f i c u l t patients. F i n a l l y , they described t h e i r struggles with t r y i n g to "make sense" of t h e i r experience. 80 Chapter Five - Analysis of Findings This chapter presents an analysis of findings from the subjects' accounts of t h e i r experiences i n caring for young-middle aged patients dying from cancer. A v a r i e t y of issues emerged from these accounts. However, three themes appeared to warrant further exploration and analysis. The f i r s t r e l a t e s to the fi n d i n g that subjects experienced considerable d i s t r e s s by v i r t u e of i d e n t i f y i n g with dying patients of an age s i m i l a r to t h e i r own. The second relates to the stress experienced by the subjects as they address the care needs of the families of these patients. In p a r t i c u l a r , subjects found interactions with the patients' parents and dependent childre n to be very s t r e s s f u l . F i n a l l y , issues around providing p a l l i a t i v e care i n a curative setting are examined. Because each of these themes was powerfully represented i n the subjects' descriptions, and because each represents an unique component of the experience of caring for young-middle aged dying patients, t h i s chapter w i l l consider these three themes i n d e t a i l . Issues i n Identifying with Patients A l l of the subjects discussed the d i f f i c u l t i e s they experienced when nursing patients i n the young-middle aged group. Subjects described i d e n t i f y i n g , 81 c l o s e l y with patients who were i n t h e i r age group. In fa c t , when asked why they found the young-middle aged patient group to be so s t r e s s f u l and d i f f i c u l t to nurse, subjects' i n i t i a l responses were frequently something to the e f f e c t that "this could be me." Of the fourteen subjects interviewed, twelve ( i e . 85% of the sample) were, i n fact, within the age range ( i e . 20-45 years of age) of the patient population targeted i n t h i s study. For the two subjects who were not i n the age range of the target patient population, i d e n t i f i c a t i o n was also an issue. They i d e n t i f i e d with the patients' parents, imagining the t e r r i b l e tragedy they would experience should t h e i r c h i l d , l i k e the patient, be dying of cancer. The l i n k between stress experienced by the nurse, and patient i d e n t i f i c a t i o n has been described i n the l i t e r a t u r e (Vachon, 1987). In keeping with the findings of t h i s study, Alexander (1990) found that p a l l i a t i v e care nurses experience greater stress when nursing patients under the age of 40. He noted that the p r i n c i p a l reason for t h i s was that nurses i d e n t i f y with these patients. The nature of the i d e n t i f i c a t i o n . In examining the nature of patient i d e n t i f i c a t i o n as discussed by the subjects i n t h i s study, sharing s i m i l a r ages and l i f e situations appear to be ce n t r a l 82 factors. However, other factors may also be s i g n i f i c a n t . For example, the subjects also stressed that these patients and t h e i r families required a high l e v e l of nursing involvement, both i n terms of time and i n t e n s i t y . The following factors demanded a high l e v e l of emotional and time commitment on the part of the nurse. The young-middle aged dying patients were seen as angrier and more emotionally intense than other patients. Subjects found that they asked more questions, and required more information about t h e i r disease and treatments. In addition, these patients were found to have d i f f i c u l t y accepting t h e i r disease and death; they had d i f f i c u l t y " l e t t i n g go." Patients and families were observed to f i g h t hard against the eventuality of death. It might be hypothesized that subjects i d e n t i f i e d so strongly because of these patients' desire and f i g h t for l i f e . Thus, l e v e l of involvement appears to be a c r i t i c a l factor i n patient i d e n t i f i c a t i o n . This i s also i n keeping with the finding that the subjects outside of the age range of the target patient population i d e n t i f i e d c l o s e l y with the parents of these patients. Ultimately, patient/family i d e n t i f i c a t i o n may not be a s i g n i f i c a n t stressor u n t i l a c r i t i c a l l e v e l of involvement i s reached. Interestingly, 83 subjects d i d not r e f l e c t on t h e i r l e v e l of involvement with patients with whom they did not i d e n t i f y . Further insights as to why subjects i d e n t i f i e d strongly with c e r t a i n patients and not others could help to c l a r i f y the r e l a t i o n s h i p between patient i d e n t i f i c a t i o n and patient involvement. Patient i d e n t i f i c a t i o n was always discussed i n terms of pai n f u l and s t r e s s f u l patient/family r e l a t i o n s h i p s . Subjects r e c a l l e d these re l a t i o n s h i p s with great emotion. They described f e e l i n g g u i l t y f or not being sick, and being frightened of experiencing the same fate as the patient. As the subjects r e c a l l e d t h e i r relationships with these young-middle aged dying patients, t h e i r memories were highlighted with feelings of anger, fear, helplessness and g u i l t . In contrast to these negative aspects of patient i d e n t i f i c a t i o n , i t i s in t e r e s t i n g to note that Davies' and Oberle's "Supportive Care Model" (1990) encourages the nurse to "enter" the patient's experience. According to t h i s model, nurses must e s t a b l i s h a rapport and f i n d the common bond which w i l l allow them to make the connection which i s seen as a necessary part of t h e i r supportive r o l e . A v a r i e t y of strategies are involved i n making and sustaining t h i s connection, including being available to the patient and family, and giving of s e l f . 84 Coping mechanisms. The subjects recognized that both t h e i r work and home l i v e s were affected by the experience of nursing these patients. They i d e n t i f i e d a v a r i e t y of coping mechanisms for dealing with t h e i r stress including support within the work environment (eg. support meetings, team approach), t a l k i n g with peers, and t h e i r involvement with a c t i v i t i e s outside of work. These strategies and others have been i d e n t i f i e d i n the l i t e r a t u r e (Munley, 1985; Zelewsky & B i r c h f i e l d , 1992). However, the creation and maintenance of a "distance" between themselves and t h e i r young-middle aged patients appeared to be the primary coping mechanism u t i l i z e d by subjects. A v a r i e t y of strategies were i d e n t i f i e d by subjects enabling them to maintain some distance between themselves and these patients. For example, the "distances" ranged from ensuring that they took t h e i r breaks to working only part-time. Again, s i m i l a r strategies are i d e n t i f i e d i n the l i t e r a t u r e (Munley, 1985). However, while distancing strategies may be e f f e c t i v e i n decreasing stress, they may also be a sign of burnout (Munley, 1985). Thus, the intent and ultimate consequences of these strategies should be considered i n more depth. 85 The costs of distancing behaviours. In discussing distancing as a method of coping with t h e i r stress, subjects frequently refer r e d to t h e i r fears around the issues of over-involvement and over-investment. They emphasized the need to maintain a professional balance i n t h e i r nursing rel a t i o n s h i p s with young-middle aged patients, and feared s h i f t i n g from a professional, therapeutic focus to one where t h e i r emotional over-involvement clouded t h e i r judgement and rendered them i n e f f e c t i v e as caregivers. S i m i l a r l y , Zelewsky and B i r c h f i e l d (1992) recognized the "emotional danger" i n nurses becoming so attached and involved i n the suff e r i n g of t h e i r patients that they were overwhelmed personally and i n e f f e c t i v e p r o f e s s i o n a l l y . Thus, distancing was viewed by the subjects as an e f f e c t i v e method for preventing over-involvement and over-investment, and reducing t h e i r stress when nursing the young-middle aged dying patients with whom they tend to i d e n t i f y so strongly. At the same time, these patients were also recognized as having greater care needs than other patients. Subjects agreed that these patients and t h e i r families required a greater i n t e n s i t y of involvement and greater time commitment than d i d other patients. Distancing behaviours on the 86 part of the nurse appear to contrast with the magnitude of the needs of these patients. In' l i g h t of t h i s contrast, there may be costs associated with distancing from such needy patients. While there may be benefits to the nurse, one might question how the patient benefits when distancing i s employed. How are the multiple and complex needs of these patients and t h e i r families met i f the nurse i s focused on l i m i t i n g her/his involvement i n order to maintain a professional relationship? How do intimate nurse/patient relationships develop when nurses choose not to keep the same patient assignment as a way of distancing? F i n a l l y , can the nurse meet the c r i t e r i a for the supportive care r o l e (Davies & Oberle, 1992) i n these situations? Subjects v i v i d l y remembered situations i n which they had become over-involved and over-invested i n t h e i r relationships with c e r t a i n patients. These experiences appear to have profoundly affected the subjects, leaving them frightened of becoming so deeply involved again. Perhaps the pain associated with these relationships relates to the subject's strong i d e n t i f i c a t i o n with the patient. Thus, they also experience the desperate desire for l i f e and the loss of hope. I t might be hypothesized that these fears provide the d r i v i n g force for the emphasis on 87 monitoring and preventing over-involvement which was apparent i n t h i s study's findings. In f a c t , subjects not only monitored t h e i r own l e v e l of patient involvement, but also monitored the involvement of t h e i r peers, p a r t i c u l a r l y t h e i r more inexperienced peers. The l i t e r a t u r e also documents situations where nurses should step back to put some distance and perspective between themselves and t h e i r patients. While making a connection i s central to providing supportive care to these patients (Davies & Oberle, 1992), Larson (1992) warns that t h i s connection can be jeopardized i f the nurse's focus turns to her/his own p a i n f u l , emotional reaction to the patient's s i t u a t i o n . Further, the l i t e r a t u r e d i r e c t s nurses to examine the nature of t h e i r involvement with t h e i r patients and assess whose needs are being met i n an e f f o r t to ensure a healthy l e v e l of involvement (Larson, 1992; Munley, 1985; Zelewsky & B i r c h f i e l d , 1992). Davies and Oberle (1992) describe t h i s as preservation of i n t e g r i t y and view i t as i n t e g r a l to the nurse's e f f e c t i v e functioning. Recognizing that r e a l issues and concerns are associated with the nurse becoming over-involved with these patients, there are also issues and concerns associated with minimizing involvement. The emphasis 88 subjects placed on distancing from these most needy patients suggests that past experience with over-involvement may lead them to minimize t h e i r patient involvement thereby jeopardizing t h e i r a b i l i t y to provide supportive care (Davies & Oberle, 1992) . Subjects determined the extent to which they became involved with t h e i r patients based on what they described as a "professional l i n e " or "professional balance." The degree to which these nurses were able to meet the supportive care needs of t h e i r patients must be understood i n terms of t h i s l i n e . Subjects described determining t h i s l i n e for t h e i r less experienced peers. Thus, i t would appear that nurses with the least experience have the l e a s t control over where the l i n e i s drawn and that the l e v e l of patient involvement considered appropriate i s determined p r i m a r i l y by the more experienced s t a f f . Therefore, i t might be hypothesized that the fear of re-experiencing a very intense and p a i n f u l patient r e l a t i o n s h i p i s a fundamental factor i n determining the p o s i t i o n of t h i s l i n e . While subjects emphasized t h e i r need to employ distancing behaviours with the target patient group, they also acknowledged that they f e l t "drawn" to care for these patients. Thus, a powerful dichotomy ex i s t s for nurses caring for young-middle aged dying patients. 89 Although unable to make sense of the great tragedy of these s i t u a t i o n s , subjects maintained that they benefited greatly by nursing these patients. At the same time, they found these situations so upsetting and s t r e s s f u l that they f e l t forced to distance themselves from caring these patients. What compels nurses to care for these d i f f i c u l t patients when they constantly f e e l the need to monitor and l i m i t t h e i r patient involvement and investment? I t might be hypothesized that the strength of patient i d e n t i f i c a t i o n i s a cent r a l factor i n t h i s c o n f l i c t . In summary, patient i d e n t i f i c a t i o n plays a c e n t r a l r o l e i n the subjects' experience of caring f o r young-middle aged dying patients. Subjects i n the target age group i d e n t i f i e d strongly with the patients while older subjects i d e n t i f i e d with the patients' parents. The magnitude and complexity of the needs of these patients and fam i l i e s , combined with strong i d e n t i f i c a t i o n on the part of the subjects, produced highly emotional and intense r e l a t i o n s h i p s . Experiencing these emotionally exhausting relationships lead subjects to focus on: c a r e f u l l y l i m i t i n g t h e i r involvement through distancing behaviours designed to maintain a professional balance. Id e a l l y t h i s balance enabled the subjects to function e f f e c t i v e l y as professionals and escape the d i f f i c u l t i e s associated with patient over-involvement 90 and over-investment. However, there may be s i g n i f i c a n t costs associated with distancing. For example, distancing may prevent the nurse from e s t a b l i s h i n g the intimate patient connection necessary to provide supportive care. Issues i n Caring for Families In discussing the stressors they experienced while nursing the young-middle aged dying patients, subjects frequently referred to patients' f a m i l i e s . These families were seen as being larger and more complex i n both structure and needs than the families of older patients. Family plays an important r o l e i n the patient's response to diagnosis, treatment, and prognosis. In fact, the p a l l i a t i v e care l i t e r a t u r e i d e n t i f i e s the family, including the patient, as the unit of care (Rovinski, 1979). Thus, i t i s important that issues around the family be addressed and understood i n order to f a c i l i t a t e the nurse's a b i l i t y to support the patient. The dependent children. Patients with dependent childre n were found to be p a r t i c u l a r l y s t r e s s f u l to nurse. Subjects i d e n t i f i e d that they f e l t i l l-equipped to t a l k to these c h i l d r e n about the i l l n e s s e s and impending deaths of t h e i r parents. However, they f e l t that the c l i n i c a l nurse 91 s p e c i a l i s t did possess the knowledge base to communicate e f f e c t i v e l y and successfully with these ch i l d r e n . Subjects appear to have a sense that there i s a s p e c i f i c knowledge base determining the "right" and "wrong" things to say i n these s i t u a t i o n s . Further, the fear of saying the "wrong thing" appeared to be a factor i n the stress subjects experienced when nursing patients with young children. One might question whether there are, i n f a c t , s p e c i f i c things which should or should not be said to these children. Further, i n examining t h i s issue i t would be in t e r e s t i n g to determine whether nurses who have c h i l d r e n are better able to cope with and communicate with patients' children. One subject d i d question her " c r e d i b i l i t y " and " q u a l i f i c a t i o n s " to t a l k to c h i l d r e n i n l i g h t of the fact that she was c h i l d l e s s . Subjects discussing t h i s issue i d e n t i f i e d t h e i r feelings of inadequacy with respect to communicating with the children. However, t h e i r descriptions suggest that there may be s i g n i f i c a n t u n i d e n t i f i e d factors which also contribute to t h e i r stress. For example, subjects are very aware of what the patient's outcome w i l l be, while at the same time the chi l d r e n may be b l i n d to the tragedy which w i l l forever change t h e i r l i v e s . In i d e n t i f y i n g with these patients, subjects 92 may be projecting what the future of t h e i r own c h i l d r e n would be i n a s i m i l a r s i t u a t i o n . Further, there may be a difference between subjects who have c h i l d r e n and those who don't, i n terms of the e f f e c t that patient i d e n t i f i c a t i o n has on t h e i r a b i l i t y to cope with issues around the patient's children. The parents. Subjects i d e n t i f i e d that coping with parents was also a factor i n the stress they experienced when nursing young-middle aged dying patients. I t i s i n t e r e s t i n g to note that subjects d i d not describe s i m i l a r feelings of f r u s t r a t i o n with respect to the r o l e of, and t h e i r interactions with the spouses of these patients. With 85% of the subjects being i n the same age range as patient and spouse, perhaps they i d e n t i f i e d more strongly with, and thus, empathized more c l o s e l y with the spouse as opposed to the parents. In p a r t i c u l a r , subjects described t h e i r d i f f i c u l t i e s i n dealing with the patients' mothers. They viewed patients re l i n q u i s h i n g control to t h e i r parents i n a very negative l i g h t . Why were these r o l e changes seen to be so upsetting? It appears that the subjects value the a b i l i t y and desire of patients to maintain some control and independence as t h e i r disease progresses. In contrast they were upset by what they saw as the parents' r o l e 93 i n f a c i l i t a t i n g patients' dependence. However, the l i t e r a t u r e suggests that these r o l e changes are a natural consequence of the patient/family's progression through i l l n e s s and dying to death. For example, the research of Davies, Reimer, and Martens (1990), with respect to the experience of families when one of the members receives p a l l i a t i v e care, reveals that the; r e d e f i n i t i o n of roles i s a central task i n enabling the family to cope with the change i n the patient's status. The patient redefines herself/himself as a r e f l e c t i o n of the person they has become through t h e i r i l l n e s s . At the same time, family members redefine the patients and assume extra r e s p o n s i b i l i t i e s and roles i n response to the patient's increased dependence. Subjects voiced f r u s t r a t i o n noting that, as parents became increasingly involved i n the patient's care, they were no longer able to communicate as openly and honestly with the patient as they had before. In addition, some parents were observed to take on an, adversarial r o l e i n t h e i r attempts to protect t h e i r c h i l d . Thus, the nature of the nurse/patient r e l a t i o n s h i p was s i g n i f i c a n t l y changed i n l i g h t of increased parental involvement. In examining the f r u s t r a t i o n of subjects with respect to the r o l e changes of patients and t h e i r parents, one must consider the subsequent changes i n 94 the r o l e of the nurse. With changes i n roles comes changes i n the balance of power. Perhaps, subjects f e l t i n some way that t h e i r r o l e was diminished, as highlighted by the new l i m i t s they experienced when communicating with t h e i r patients. One might question whether a struggle for control between nurse and parent, as primary caregivers, was a factor i n the adversarial approach subjects a t t r i b u t e d to parents and the d i s t r e s s they f e l t with patients' increased dependence. One might consider whether patient care i s i n any way compromised i n l i g h t of these r o l e changes. For example, i f the patient no longer communicates openly and honestly about dying and death with her/his nurse, are these needs being met through communication with her/his parents? If not, are the patient's needs being met i n some other way by the parents? Is i t not appropriate that i n dying and death, the patient does become increasingly dependent upon the parent, p a r t i c u l a r l y the mother? I t would seem very natural to r e v i s i t the o r i g i n a l child/parent dynamic i n the face of impending death. Perhaps, the stress that subjects a t t r i b u t e d to dealing with the parents needs to be understood i n terms of adjusting to t h e i r own r o l e changes. While the intimate r o l e with the patient may appear to be 95 compromised by an increased parental presence, i t must be remembered that the nurse plays a c r u c i a l r o l e for both patient and family throughout the dying and death. As noted by Rovinski (1979), each patient and family must be seen as a unique group, and the nurse must appreciate the s i t u a t i o n from the family perspective i n order to f a c i l i t a t e t h e i r family c r i s i s coping mechanisms. Therefore, the patient can not be considered apart from the family, e s p e c i a l l y when families are as c l o s e l y involved with the patient as were the families described by subjects i n t h i s study. In summary, the subjects frequently found i t d i f f i c u l t to cope with the families of the young-middle aged dying patients. As discussed above, dependent ch i l d r e n and highly involved parents were both p a r t i c u l a r l y d i f f i c u l t to deal with. Subjects f e l t i l l - e q u i p p e d to communicate with dependent c h i l d r e n . Further, they f e l t that t h e i r patient communication was severely l i m i t e d as patients became increasingly dependent on t h e i r parents. Coping suc c e s s f u l l y with these family stressors i s c r i t i c a l i n providing supportive care for both patient and family. 96 Issues i n S h i f t i n g From a Curative to a P a l l i a t i v e Focus Subject interviews were punctuated by expressions of the great sadness and g r i e f they experienced when nursing young-middle aged dying patients. Feelings of helplessness and hopelessness were discussed i n r e l a t i o n to the d i f f i c u l t y they had making sense of the tragedy of these sit u a t i o n s . Their professional and personal l i v e s were profoundly affected by nursing t h i s patient group, leading subjects to choose to work only part-time or employ other distancing behaviours. The l i t e r a t u r e has explored the stress associated with the nursing care of dying patients. Studies have compared the stress experienced by p a l l i a t i v e nurses with that of nurses working i n other settings (Bram & Katz, 1989; Thompson, 1985). The re s u l t s indicate that p a l l i a t i v e nurses experience less stress and greater rewards i n t h e i r care of the dying than do nurses i n settings with a curative focus. Examining these comparisons i n terms of the findings of t h i s study, i t must be remembered that t h i s study focuses s p e c i f i c a l l y on the stress associated with nursing patients i n the young-middle aged group. Subjects indicated that t h i s stress was much greater than that experienced when nursing older patients. Further study might help to determine the extent to 97 which the stress i d e n t i f i e d by subjects when nursing the target population i s a function of the issues discussed i n t h i s chapter, and to what extent i t rel a t e s to the unique nature of the target patient group. The l i t e r a t u r e does recognize s i g n i f i c a n t d i f f i c u l t i e s inherent i n providing p a l l i a t i v e care i n curative settings (Garossino, 1991; Mount, 1976; Thompson, 1985), however issues unique to nursing young-middle aged dying patients are not addressed i n these studies. Mount (1976) observes that curative s k i l l s and goals are not appropriate for meeting the p a l l i a t i v e needs of patient and family. This observation i s supported by the findings of t h i s study. Several subjects associated t h e i r stress with a lack of support for p a l l i a t i v e care that they perceived on the part of some physicians, and the agency as a whole. I t i s important to note that at the time that these interviews were conducted, the agency d i d not have an integrated p a l l i a t i v e care mandate. However, at the time of t h i s writing, t h i s i s no longer true. There i s now a j o i n t committee of nurses and physicians examining p a l l i a t i v e issues within the agency. Nonetheless, at the time the interviews were conducted the lack of a s p e c i f i c mandate for p a l l i a t i v e care was of concern to subjects. They expressed 98 concern about where patients would receive t h e i r care a f t e r moving from a curative to a p a l l i a t i v e diagnosis. While there appeared to be a strong desire to provide p a l l i a t i v e care for these patients, subjects questioned whether they had the necessary knowledge and expertise to provide t h i s p a l l i a t i v e care as well as cope with t h e i r own responses to these s i t u a t i o n s . Subjects also questioned whether they had the administrative support necessary to provide p a l l i a t i v e care. Subjects did, i n fa c t , experience s i g n i f i c a n t stress when providing p a l l i a t i v e care to the target population. And, the primary coping mechanism they employed involved some degree of distancing. I t i s in t e r e s t i n g to note that i n a comparative study of p a l l i a t i v e and oncology nurses (Bram & Katz, 1989), the authors concluded that patient contact was not inherently s t r e s s f u l for the p a l l i a t i v e nurse, but instead, was what they valued most i n t h e i r work. This contrasts with the findings of t h i s study, where subjects associated t h e i r stress with a high l e v e l of contact and involvement with the target patient group. The r e s u l t s of Bram and Katz (1989) also suggest that the hospice environment i s a less s t r e s s f u l environment i n which to care for dying patients than i s a hos p i t a l oncology unit. Hospice nurses perceived greater support for discussing work-related feelings 99 and problems i n the workplace than did the oncology nurses. Findings also suggest that hospice nurses experience less dissonance between t h e i r i d e a l and r e a l work si t u a t i o n s . In l i g h t of these findings, one might question whether greater support of p a l l i a t i v e care within the Cancer Agency would create a work environment such that the subjects would f e e l more comfortable and competent i n providing q u a l i t y supportive care. The work environment i s an important factor i n determining the "philosophy" of a nursing unit which, i n turn, encourages a p a r t i c u l a r response to dying and death (Thompson, 1985). Experience has also been found to be a p o s i t i v e factor i n determining nurses' attitudes with respect to the dying (Garossino, 1991; Thompson, 1985). However, Thompson (1985) concludes that nurses i n curative settings are not able to completely adopt a p a l l i a t i v e o r i e n t a t i o n i n the face of the d a i l y task structures and the aura of f a i l u r e that dying c a r r i e s within curative settings. He predicts that caring for the dying i n curative settings w i l l have greater psychological costs and fewer rewards. Perhaps, the stress i d e n t i f i e d by subjects i n t h i s study was re l a t e d to t h e i r d i f f i c u l t y i n achieving the philosophical reorientation necessary to provide 100 p a l l i a t i v e care i n a curative s e t t i n g . Degner, Gow, and Thompson (1991) observed that an important behaviour for nurses working i n curative settings was to f a c i l i t a t e the t r a n s i t i o n from curative to p a l l i a t i v e care. The experiences of subjects i n t h i s study indicates that the nurses themselves must make the t r a n s i t i o n from curative to p a l l i a t i v e care, and that t h i s t r a n s i t i o n may be a d i f f i c u l t one. Some of the d i f f i c u l t y i n achieving t h i s t r a n s i t i o n may be related to lack of support i n the work environment (Thompson, 1985). Perhaps another important factor to consider i s the patient's progression along the disease t r a j e c t o r y . P a l l i a t i v e nurses know t h e i r patients only as p a l l i a t i v e patients; however, the subjects i n t h i s study formed relationships with patients who were desperately hoping and f i g h t i n g for cure. These relationships may have begun at diagnosis when the ravages of disease and treatment had not yet begun to a f f e c t the patient and family. Once cure i s ho longer the goal, a s i g n i f i c a n t emotional and mental s h i f t i s required on the part of the nurse, the patient, and the family. Concepts such as hope and q u a l i t y of l i f e must be reevaluated to f i t with a new p a l l i a t i v e focus. Perhaps the d i f f i c u l t y and pain associated with t h i s t r a n s i t i o n i s expressed i n the d i f f i c u l t y subjects 101 had making sense of these t r a g i c s i t u a t i o n s . P a l l i a t i v e nurses were observed to enter i n t o , and come away from relationships with dying patients with comparative ease (Thompson, 1985). This contrasts with the dread subjects i n t h i s study f e l t i n a n t i c i p a t i o n of caring for a patient i n the target population, and the feelings of anger, bitterness and sadness they f e l t a f t e r the patient's death — t h e i r i n a b i l i t y to make sense of i t . It i s assumed that the subjects had developed personal philosophies with respect to t h e i r work i n oncology which f a c i l i t a t e d t h e i r a b i l i t y to p a r t i c i p a t e i n the complex treatment regimens and cope with the resultant complex physical and emotional costs to the patient. However, the findings from t h i s study suggest that subjects had not developed a s i m i l a r philosophy with respect to p a l l i a t i v e care. One might predict that such a philosophy would s i g n i f i c a n t l y decrease the stress that subjects experience when nursing the young-middle aged dying patients and help them to "make sense of i t . " In summary, i n understanding the d i f f i c u l t i e s subjects experienced when nursing young-middle aged patients one must consider issues involved i n s h i f t i n g from a curative to a p a l l i a t i v e focus. For example, to what extent did the lack of support i n t h e i r work 102 environment and t h e i r lack of a p a l l i a t i v e expertise and philosophy a f f e c t t h e i r stress? Further, what r o l e did f a c i l i t a t i n g the patients' t r a n s i t i o n from curative to p a l l i a t i v e care, as well as making t h e i r own t r a n s i t i o n , play i n creating t h e i r stress? F i n a l l y , the stress of the subjects i n r e l a t i o n to the above factors must be considered s p e c i f i c a l l y i n terms of the unique nature of the target population. Summary In analyzing the subjects' descriptions of t h e i r experiences nursing young-middle aged dying patients, an overwhelming sense of t h e i r d i f f i c u l t i e s and stress emerged. A l l fourteen subjects discussed i d e n t i f i c a t i o n as a factor i n the stress they experienced. Subjects within the target age group i d e n t i f i e d with the patients, while older subjects i d e n t i f i e d with the patients' parents. They recognized the intense involvement, both i n terms of time and emotion, which these patients and families required. They also recognized the dangers of becoming over-involved and employed distancing behaviours i n order to l i m i t involvement and maintain a professional balance i n t h e i r patient r e l a t i o n s h i p s . However, distancing i s not without i t s costs, whether current or p o t e n t i a l , to 103 the patient and family. S i g n i f i c a n t l y , there was no discussion of these costs by subjects. Patients' families were also i d e n t i f i e d as important factors i n creating stress for the subjects. Several subjects stated that they f e l t i l l - e q u i p p e d to t a l k to the dependent children of t h e i r patients. They voiced concerns with respect to saying the "wrong things." Subjects also i d e n t i f i e d t h e i r concerns and f r u s t r a t i o n when the patients appeared to be r e l i n q u i s h i n g control to highly involved parents. This f r u s t r a t i o n may be linked with changes i n the nurses' r o l e and the balance of power i n the patient r e l a t i o n s h i p as the parental involvement increases. It might also be hypothesized that the stress and f r u s t r a t i o n subjects described may also r e l a t e to viewing the needs of patient and family separately. This c6ntrasts with the b e l i e f documented i n the p a l l i a t i v e care l i t e r a t u r e that the family must be considered as the unit of care (Mount, 1985) . A t h i r d area of stress emerged as subjects indicated that they f e l t a lack of support within t h e i r work environment and a lack of expertise with respect to providing p a l l i a t i v e care. The l i t e r a t u r e suggests that support within the work environment and an appropriate philosophical orientation enables p a l l i a t i v e nurses to cope with the stresses inherent i n 104 caring for the dying. In examining the stresses described by subjects i n t h i s study with the documented experiences of p a l l i a t i v e nurses, i t must be noted that the l i t e r a t u r e has not explored the experiences of p a l l i a t i v e nurses i n terms of the target patient population. Thus, the extent to which providing p a l l i a t i v e care i n a curative se t t i n g , patient i d e n t i f i c a t i o n , and family stressors created the stress described i n t h i s study can not be determined without further research which also takes into account the unique nature of young-middle age dying patients. 105 Chapter Six - Summary, Conclusions, Implications This concluding chapter begins with a summary of preceeding chapters, providing an overview of the study's purpose and conceptual framework, review of rel a t e d l i t e r a t u r e , methodology, and presentation and analysis of findings. The following section outlines conclusions based on study findings. The f i n a l section i n t h i s chapter explores implications of the study findings and conclusions i n terms of nursing p r a c t i c e and education, administration, and research. Summary Research has addressed issues facing nurses who care for patients dying of cancer. The vast majority of these patients are over the age of 45 years o l d . Thus, with the exceptions of pe d i a t r i c oncology patients and patients with HIV, the l i t e r a t u r e has focused primarily on the older patient group. Consequently, nursing issues with respect to the 20-45 year o l d patient group have not been examined. This study intends to address t h i s gap i n the l i t e r a t u r e by describing the experience of oncology nurses caring f o r young-middle aged ( i e . 20-45 years old) patients dying of cancer. The conceptual framework d r i v i n g t h i s study recognizes that the target population presents unique 106 challenges f o r the nurse. The families of these patients frequently include dependent ch i l d r e n and parents, a l l requiring an intense involvement on the part of the nurse. Further, nurses i n a s i m i l a r age range, may experience a strong i d e n t i f i c a t i o n with the patient. I t i s believed that insights into these issues may help to prevent some of the symptoms of stress and burnout which these nurses experience. A review of related l i t e r a t u r e recognizes stressors a f f e c t i n g the nurse i n the following areas: the work environment, the patient and family, and personal inner experience. Stressors within the work environment were viewed as being p a r t i c u l a r l y s i g n i f i c a n t . In the area of patient and family stressors, young-middle aged oncology patients were i d e n t i f i e d as being p a r t i c u l a r l y s t r e s s f u l . A v a r i e t y of strategies for addressing such stressors and thus, preventing burnout have been i d e n t i f i e d . These strategies include support within the work environment, for example, adequate s t a f f i n g , good o r i e n t a t i o n and on-going education, regular support meetings, and m u l t i d i s c i p l i n a r y team meetings. The need for nurses to develop personal philosophies with respect to dying and death, and to develop s a t i s f y i n g personal l i v e s i s also emphasized. While the patient group targeted i n t h i s study i s documented as being s t r e s s f u l to nurse, 107 the l i t e r a t u r e does not s p e c i f i c a l l y examine the d i f f i c u l t i e s , or related coping strategies with respect to nursing these patients. In l i g h t of the gap i n the l i t e r a t u r e with respect to nursing the target patient population, a d e s c r i p t i v e study design was chosen. Convenience sampling was used, and fourteen subjects were interviewed f o r approximately one hour each. A l l subjects were registered nurses working i n oncology who had cared for a young-middle aged dying cancer patient within the past two years. Data analysis was concurrent with data c o l l e c t i o n , confirming the categories derived from the conceptual framework. The data was sorted into these categories, which were then reworked through subdividing and combining categories to accurately r e f l e c t the data. Study l i m i t a t i o n s include l i m i t e d g e n e r a l i z a b i l i t y with the sample representing only one i n s t i t u t i o n . In addition, the p r e c i s i o n and s e n s i t i v i t y of the categories was l i m i t e d by the fact that t h e o r e t i c a l sampling was not used. The interviews yielded r i c h and i l l u m i n a t i n g data which was sorted into the following categories: general responses to the experience; comparisons with older patients; the family as a source of s t r e s s ; other stressors; coping with the stress; p o s i t i v e benefits; and making sense of i t . Although valuable insights 108 could be drawn from a l l of these categories, three areas were selected for indepth analysis. The areas selected for analysis included: issues i n i d e n t i f y i n g with patients, issues i n caring for fam i l i e s , and issues i n s h i f t i n g from a curative to a p a l l i a t i v e focus. I t was f e l t that analysis of these issues was important i n describing the oncology nurse's experience i n caring for young-middle aged patients dying of cancer as outlined i n the study's purpose*. Conclusions The following description of the experience of oncology nurses caring for young-middle aged patients dying of cancer was based on t h i s study's findings and analysis. Oncology nurses f i n d nursing young-middle aged patients dying of cancer p a r t i c u l a r l y d i f f i c u l t and s t r e s s f u l . The relationships that they form with these patients are highly emotional, with the nurses experiencing feelings of g u i l t , helplessness, hopelessness, anger, and bitterness. Nurses i n the same age range strongly i d e n t i f y with the patients, while older nurses i d e n t i f y with the patients' parents. Although the nurses are able to recognize the multiple and complex needs of these patients, they f e e l that they lack the necessary expertise to s u c c e s s f u l l y 109 meet these needs. For example, they f e e l i l l - e q u i p p e d to communicate and cope with the dependent c h i l d r e n of t h e i r patients. They also experience stress and f r u s t r a t i o n i n t h e i r interactions with protective and involved parents who appear to promote dependent behaviour on the part of the patient. Further, the nurses f e e l that they lack expertise i n p a l l i a t i v e care, i n general; and, they believe that there i s a lack of support i n t h e i r work environment for the provis i o n of t h i s care. (Again, since the time that these interviews were conducted, the B.C. Cancer Agency has developed a mandate to address p a l l i a t i v e care issues.) These factors a l l contribute to the d i f f i c u l t i e s oncology nurses experience when caring f o r young-middle aged patients dying of cancer. Oncology nurses f i n d the i n t e n s i t y of t h e i r g r i e f and sadness, i n combination with the stress that they experience when nursing these patients, overwhelming. As a r e s u l t , they s t r i v e to maintain highly professional relationships by c l o s e l y monitoring the l e v e l of t h e i r involvement and investment, and that of t h e i r peers, with these d i f f i c u l t patients. They fear becoming overly involved i n the tragedy that i s the dying and death of these patients. Thus, they employ distancing strategies such as changing patient assignments and working only part-time. 1 1 0 However, despite the fears, d i f f i c u l t i e s and stressors, and despite t h e i r i n a b i l i t y to make sense of these t r a g i c s i t u a t i o n s , oncology nurses f e e l that they benefit p o s i t i v e l y from nursing the young-middle aged dying cancer patients. In fact, although they may face these patients with some dread, they f e e l drawn to nurse them, thankful for the insights and enrichment that these patients bring to t h e i r l i v e s . Implications The findings from t h i s study have implications f o r nursing p r a c t i c e and education, administration, and research as discussed i n the following sections. Nursing practice and education. When considering the findings from t h i s study, one i s struck by an overwhelming sense of how d i f f i c u l t and s t r e s s f u l i t i s to nurse the young-middle aged patient dying of cancer. And thus, i n determining the implications these findings hold for nursing p r a c t i c e and education, recognition of the d i f f i c u l t i e s and .stressors inherent i n t h i s nursing care provides an appropriate s t a r t i n g point. Nurses whose practice includes the patient group targeted i n t h i s study should be aware of the d i f f i c u l t i e s and stressors they may encounter when nursing these patients. In p a r t i c u l a r , an awareness of I l l issues around patient i d e n t i f i c a t i o n , and recognition of the stressors related to the complexity of the family unit's needs and structure could help prepare the nurse to cope i n these d i f f i c u l t s i t u a t i o n s . Nurses may f e e l the need to employ distancing behaviours when nursing t h i s patient group, e s p e c i a l l y i f they have previously nursed patients who required a high l e v e l of emotional involvement and time commitment. However, they should be aware of the p o t e n t i a l costs of such distancing.. Before any distancing occurs, nurses should assess and continue to reassess whose needs are being met i n order to ensure that they maintain a l e v e l of patient involvement necessary to provide supportive care. F i n a l l y , when faced with nursing a young-middle aged patient dying of cancer, nurses must understand and be able to apply the philosophy of p a l l i a t i v e care i n t h e i r work. Thus, nurses should recognize the "family" as the unit of care. As a r e s u l t , d i f f i c u l t i e s and stressors they may experience with family interactions need to be acknowledged and addressed as a part of the care they are providing f o r the patient. Nursing education has a r e s p o n s i b i l i t y i n ensuring that nurses develop an awareness and understanding of the issues involved i n caring for t h i s patient group, 112 and are thus able to prepare for, and cope with the d i f f i c u l t i e s they may encounter. Basic nursing education must address the needs of the dying, and i n doing so should examine the s a l i e n t concepts of p a l l i a t i v e care. Further, ongoing education with respect to p a l l i a t i v e care should be provided f o r oncology nurses, acknowledging that they do nurse p a l l i a t i v e patients. Such ongoing education must also acknowledge that oncology nurses face unique issues i n t h e i r provision of p a l l i a t i v e care which r e l a t e to providing t h i s care i n a curative s e t t i n g . In p a r t i c u l a r , the tremendous impact that the t r a n s i t i o n from a curative to p a l l i a t i v e diagnosis has on the patient, family, and nurse must be explored. Nursing administration. The findings from t h i s study also have implications for nursing administrators, i n p a r t i c u l a r those i n oncology settings. F i r s t l y , there should be an awareness and understanding on the part of administration of the impact, and p o t e n t i a l impact, of t h i s patient group on the nurses who care for them. The stresses and d i f f i c u l t i e s these nurses experience leave them vulnerable to burnout. Thus, strategies for succ e s s f u l l y coping with the stresses and preventing burnout are e s s e n t i a l . A v a r i e t y of such strategies 113 have been i d e n t i f i e d both i n the l i t e r a t u r e and i n the findings of t h i s study. In demonstrating an awareness and understanding of the issues involved i n caring for young-middle aged patients dying of cancer, and support for the nurses providing t h i s care, the administration should have a c l e a r mandate regarding p a l l i a t i v e care issues. Recognition of the fact that the nurses do provide p a l l i a t i v e care, and that t h i s care involves issues other than curative care issues, must be addressed i n the mission statement of the i n s t i t u t e . Such a statement would acknowledge commitment on the part of the administration to provide p a l l i a t i v e care within a curative s e t t i n g . Administration should provide d i r e c t i o n and support to address p a l l i a t i v e care issues at a l l l e v e l s within the i n s t i t u t e . In p a r t i c u l a r , the work s e t t i n g i t s e l f should be conducive to providing p a l l i a t i v e care. The research of Bram and Katz (1989) found that there was a need f o r congruence between professional ideals and the philosophy of the healthcare s e t t i n g . Several strategies could help to achieve t h i s congruence. For example, the philosophy and support of the administration towards p a l l i a t i v e care should be emphasized i n personnel h i r i n g practices. In addition, s t a f f i n g practices with respect to the number and type 114 of patients assigned should r e f l e c t support for and an understanding of p a l l i a t i v e care issues. In developing a work environment which i s supportive to the nurse providing p a l l i a t i v e care, a v a r i e t y of strategies can be implemented. F i r s t , there should be a team approach to p a l l i a t i v e are. As noted by Mount (1976), a m u l t i d i s c i p l i n a r y team i s necessary to meet the multidimensional needs of the patient and family. This team should include the physician, nurse, c l i n i c a l nurse s p e c i a l i s t , n u t r i t i o n i s t , occupational and/or physiotherapist, chaplain, and s o c i a l worker. Regular team meetings would f a c i l i t a t e a team approach towards care, reinforce the family as the unit of care, and ensure successful information sharing. Support f o r a team approach must be demonstrated by the administration. The development of a philosophical o r i e n t a t i o n incorporating p a l l i a t i v e care i n a curative s e t t i n g i s a major task for oncology nurses (Thompson, 1985). Systematic inservices covering the following topics would be fundamental to the development of such a philosophy: g r i e f , l o s s , and bereavement; family dynamics and coping mechanisms; coping mechanisms of ch i l d r e n and adolescents; r e l i g i o u s r i t u a l s regarding dying and death; e t h i c a l issues regarding dying and death; symptom management; and p a l l i a t i v e care. Such 115 inservices need to be supported by administration both i n terms of providing the necessary time and obtaining the appropriate expert speakers. Despite a supportive work environment and an appropriate philosophical o r i e n t a t i o n there w i l l be situations where the nurse i s devastated by the tragedy she has shared. As the findings from t h i s study in d i c a t e , t h i s appears to be p a r t i c u l a r l y true with the young-middle aged patient group. There must be support for the nurse experiencing t h i s g r i e f within the work environment. For example, nurses should be encouraged to share t h e i r feelings with peers and others i n an ad hoc manner. In addition, there should be support meetings organized to respond to these d i f f i c u l t s i t u a t i o n s . The services of a chaplain, c l i n i c a l nurse s p e c i a l i s t , or s i m i l a r appropriate professional should also be made availa b l e to address i n d i v i d u a l needs. Thus, administration can play a v i t a l r o l e i n supporting oncology nurses i n t h e i r provision of p a l l i a t i v e care. These nurses require the support of a m u l t i d i s c i p l i n a r y p a l l i a t i v e care team, the support of ongoing education, and a supportive work environment. A c l e a r mandate from the administration to provide d i r e c t i o n and address p a l l i a t i v e care issues forms the cornerstone of t h i s support. 116 Nursing research. F i n a l l y , the findings from t h i s study have implications for nursing research. For example, an underlying premise of the present study was that oncology nurses experience stresses and d i f f i c u l t i e s which are unique to caring f o r the target patient group. Studies comparing oncology nurses and p a l l i a t i v e care nurses reveal that p a l l i a t i v e care nurses experience greater rewards and less stress i n caring for dying patients than do oncology nurses. However, these studies have not targeted the young-middle aged patient group. Thus, research into the experience of p a l l i a t i v e care nurses caring f o r t h i s patient group may help to determine the extent to which the d i f f i c u l t i e s described by oncolgy nurses i n the present study can be attributed to issues s p e c i f i c to the target patient group. The isssues involved i n nursing t h i s patient group appeared to center around the strong patient i d e n t i f i c a t i o n that the nurses experienced. Several hypotheses emerged from the analysis of patient i d e n t i f i c a t i o n issues. For example, i t was hypothesized that i d e n t i f i c a t i o n with members of t h i s patient group was linked to the desparate desire f o r , , and f i g h t f o r l i f e which defined these patients. Thus, perhaps the i d e n t i f i c a t i o n was i n some way born of the 117 nurses' desparate hope for, and f i g h t for the l i v e s of these patients. Insight into t h i s phenomenon could also be achieved through examining why nurses i d e n t i f y so strongly with c e r t a i n patients and not others. For although subjects' discussions centered around those patients with whom they i d e n t i f i e d , i t must not be assumed that they i d e n t i f i e d with every patient within the target age range. An understanding of what factors lead to t h i s i d e n t i f i c a t i o n would provide i n s i g h t into the phenomenon. Research around the above questions could provide insights into "why" and "when" i d e n t i f i c a t i o n becomes an issue for the nurse. Insight into "how" i d e n t i f i c a t i o n impacts p r a c t i c e involves d i f f e r e n t questions. Analysis of t h i s study's findings also l e d to hypotheses regarding the r o l e of i d e n t i f i c a t i o n i n determining the nurse's l e v e l of patient involvement. Analysis suggested an equation where strong patient i d e n t i f i c a t i o n leads to a high l e v e l of patient involvement (perhaps over-involvement) and ultimately r e s u l t s i n the nurse experiencing the patient's tragedy at a very deep and personal l e v e l creating intensely p a i n f u l memories. I t appears that subsequent i d e n t i f i c a t i o n i s tempered by these memories r e s u l t i n g i n distancing (perhaps under-involvement). At the same time nurses f e e l forced to protect and 118 distance themselves from a high l e v e l of patient involvement, they f e e l drawn to nurse these patients. Again, i t i s hypothesized that the strength of the patient i d e n t i f i c a t i o n i s fundamental to t h i s dichotomy. Thus, while patient i d e n t i f i c a t i o n was undoubtably a central issue i n the nurse's experience as determined by the present study, many questions remain to be answered i n understanding t h i s phenomenon and i t s impact on nursing practice. F i n a l l y , a v a r i e t y of issues were i d e n t i f i e d around providing p a l l i a t i v e care i n a curative s e t t i n g . The l i t e r a t u r e has recognized and addressed some of these issues. However, issues around the t r a n s i t i o n that the nurse experiences as the patient moves from a curative to a p a l l i a t i v e diagnosis have not been examined. This t r a n s i t i o n i s of great s i g n i f i c a n c e to patient, family, and nurse. I t i s also unique to the curative s e t t i n g , thus research into the nature of t h i s t r a n s i t i o n could further illuminate the experience of the oncology nurse as compared to the p a l l i a t i v e care nurse. Understanding the r o l e that t h i s t r a n s i t i o n plays i n the stress that nurses experience would be important i n successfully coping with t h i s stress and preventing burnout. The findings from t h i s study illuminate a v a r i e t y of issues which appear to be central to understanding 119 the oncology nurse's experience i n nursing the young-middle aged patient dying of cancer. Further research of these issues would add to t h i s understanding. I t i s hoped that t h i s understanding would ultimately improve nursing practice through decreased stress and burnout. 120 References Alexander, D. A. (1990). 'Stressors' and d i f f i c u l t i e s i n dealing with the terminal patient. Journal of P a l l i a t i v e Care, 6(3), 28-33. Be n o l i e l , J. Q. (1976). Overview: Care, cure and the challenge of choice. In M. Earle, N. T. Argondizzo, & A. H Kutscher (Eds.). The nurse as caregiver for the terminal patient and his family (pp. 9-30). New York: Columbia University Press. Bo l l e , J. L. (1988). Supporting the deliverers of care: Strategies to support nurses and prevent burnout. Nursing C l i n i c s of North America, 23.(4), 843-850. Bram, P. J . , & Katz, L. F. (1989). A study of burnout i n nurses working i n hospice and h o s p i t a l oncology settings. Oncology Nursing Forum, .16(4), 555-560. Coody, D. (1985). High expectations: Nurses who work with childr e n who might die. Nursing C l i n i c s of North America. 20(1)/ 131-143. Davies, B., & Oberle, K. (1990). Dimensions of the supportive r o l e of the nurse i n p a l l i a t i v e care. Oncology Nursing Forum, 17(1), 87-94. Davies, B., Reimer, J. C , & Martens, N. (1990). Families i n supportive care — Part 1: The t r a n s i t i o n of fading away: The nature of the t r a n s i t i o n . Journal of P a l l i a t i v e Care, 6.(3), 12-20. 121 Degner, L. F., Gow, C. M. , & Thompson, L. A. (1991). C r i t i c a l nursing behaviors i n care for the dying. Cancer Nursing, 14(5), 246-253. Diers, D. (1979). Research i n nursing p r a c t i c e . U.S.A.: J. B. Lippincott Company. F i e l d , P. A., & Morse, J. M. (1985). Nursing research: The application of g u a l i t a t i v e approaches. Rockville, Maryland: Aspen. Garossino, C. (1991). Nurses' attitudes towards death. Unpublished master's thesis, University of B r i t i s h Columbia, Vancouver, B.C. Gary, G. A. (1992). Facing terminal i l l n e s s i n c h i l d r e n with AIDS. Home Healthcare Nurse, 10(2), 40-43. Glaser, B. G., & Strauss, A. L. (1964). The s o c i a l loss of dying patients. American Journal of Nursing, 64, 119-121. Hammer, M., Nichols, D. J . , & Armstrong, L. (1992). A r i t u a l of remembrance. Maternal C h i l d Nursing, 17, 310-313-H u l l , M. M. (1989). Family needs and supportive nursing behaviors during terminal cancer: A review. Oncology Nursing Forum, 16(6), 787-792. Kristjanson, L. J. (1986). Quality of terminal care: Salient indicators i d e n t i f i e d by fa m i l i e s . Journal of P a l l i a t i v e Care. 5(1), 21-28. 122 Larson, D. G. (1992). The challenge of caring i n oncology nursing. Oncology Nursing Forum, 19(6), 857-861. Larson, P. J. (1986). Cancer nurses' perceptions of caring. Cancer Nursing 9_(2), 86-91. Lev, E. L. (1991). Dealing with l o s s : Concerns of patients and families i n a hospice s e t t i n g . C l i n i c a l Nurse S p e c i a l i s t , 5(2), 87-92. McElroy, A. M. (1982). Burnout—A review of the l i t e r a t u r e with an application to cancer nursing. Cancer Nursing. ?, 211-217. Menke, E. M. (1983). C r i t i c a l analysis of theory development i n nursing. In N. L. Chaska (Ed.). The nursing profession: A time to speak (pp. 416-426). U.S.A.: McGraw-Hill Inc. Mount, B. M. (1976). The problem of caring f o r the dying i n a general h o s p i t a l : The p a l l i a t i v e care unit as a possible solution. Canadian Medical Association Journal, 115, 119-121. Munley, A. (1985). Sources of hospice s t a f f stress and how to cope with i t . Nursing C l i n i c s of North America. 20(2), 343-355. National Cancer I n s t i t u t e of Canada. (1992). Canadian cancer s t a t i s t i c s 1992 (pp. 22-23). Toronto: Author. 123 P o l i t , D.F., & B.P. Hungler. (1991). Nursing research; P r i n c i p l e s and methods (4th ed.). Philadelphia: J.B. Lippincott Company. Quint, J. C. (1972). Awareness of death and the nurse's composure. In M. H. Browning & E. P. Lewis (Eds.). The dying patient: A nursing perspective (pp. 164-180). New York: The American Journal of Nursing Company. Rovinski, C. A. (1979). Hospice nursing: Intensive caring. Cancer Nursing, 2.(1), 19-26. Sandelowski, M., Davis, D. H., & Harris, B. G. (1989). A r t f u l design: Writing the proposal for research i n the n a t u r a l i s t paradigm. Research i n Nursing & Health, 12, 77-84. Saunders, C. M. (1978). The management of terminal disease. London: Edward Arnold Publishers Ltd. Scanlon, C. (1989). Creating a v i s i o n of hope: The challenge of p a l l i a t i v e care. Oncology Nursing Forum. 16(4), 491-496. Thompson, J r . , E. H. (1985). P a l l i a t i v e and curative care nurses' attitudes towards dying and death i n the hospital setting. Omega, 16(3), 233-242. Vachon, M. S. (1987). Occupational stress i n the care of the c r i t i c a l l y i l l , and the dying, and the bereaved. Washington: Hemisphere Publishing Corporation. 124 Waltman, N. L., & Zimmerman, L. (1991). Variations among nurses i n behavioral intentions toward the dying. The Hospice Journal, 2(4), 37-49. Watson, J. (1988) Human science and human care. Conneticut: Appleton-Century-Crofts. Zelewsky, M. G., & B i r c h f i e l d , M. (1992). Common ground: The nurse's r o l e i n caring for terminally i l l patients with Cancer or Human Immunodeficiency Virus Disease. Home Healthcare Nurse, 10.(4), 12-17. 127 Appendix: C Demographic Data Subject Code: 1. Age: 20-30 31-40 41-50 51+ 2. Education: a. Nursing Education: Diploma Bachelor's Degree Graduate Degree b. Other Diploma/Degree c. Specialty Courses: (eg. p a l l i a t i v e care) please specify 3. Nursing Experience: a. Total number of years worked i n nursing b. Total number of years worked i n oncology 128 Appendix: D Interview Guide 1. Introduction. a) How much experience have you had nursing dying patients aged 20-45 years old? b) What has that experience been l i k e for you? 2. Sources of stress. a) What do you f i n d uniquely s t r e s s f u l i n nursing dying patients aged 20-45 years old? b) How i s t h i s d i f f e r e n t from nursing older dying patients? 3. Coping with the stress. a) How do you deal with these stressors? b) Do you use these coping mechanisms when nursing older patients? c) Have you ever been unsuccessful i n coping with the stress? What was the outcome? d) Does the stress of nursing these patients a f f e c t your private l i f e ? In what way/s? 4. P o s i t i v e aspects of nursing these patients. a) Would you choose to nurse a dying patient i n t h i s age group again? What motivates your decision? b) Have you come to any new r e a l i z a t i o n s as a r e s u l t of providing t h i s kind of nursing care? Describe them. c) Have there been any p o s i t i v e benefits as a r e s u l t of providing t h i s kind of nursing Care? Describe them. 129 5. Making sense of the experience. a) What do you see as your most important r o l e i n nursing these patients? b) How does the experience of caring for these 1 patients a f f e c t you personally? c) How do you make sense of the experience of death i n t h i s age group? 

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