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Towards connectedness and trust : nurses' enactment of their moral agency within an organizational context Rodney, Patricia Anne 1987

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TOWARDS NEW MEANINGS: NURSES' ETHICAL PERSPECTIVES ON NURSING DYING PATIENTS IN A CRITICAL CARE SETTING by PATRICIA ANNE RODNEY BSc.N., The U n i v e r s i t y of Alberta,- 1977 . THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING i n THE FACULTY OF GRADUATE STUDIES (The School of Nursing) We accept t h i s t h e s i s as conforming to the req u i r e d standard THE UNIVERSITY OF BRITISH COLUMBIA December 1987 © P a t r i c i a Anne Rodney 1987 In presenting t h i s thesis in p a r t i a l f u l f i l l m e n t of the requirements for an advanced degree at the University of B r i t i s h Columbia, I agree that the Library s h a l l make i t fre e l y 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 i s understood that copying or publication of t h i s thesis for f i n a n c i a l gain s h a l l not be allowed without my written permission. Department of Nursing The University of B r i t i s h Columbia, Vancouver, Canada Date: A p r i l 29, 1988 i i A b s t r a c t TOWARDS NEW MEANINGS: NORSES' ETHICAL PERSPECTIVES ON NURSING DYING PATIENTS IN A CRITICAL CARE SETTING Th i s study d e s c r i b e s nurses' e t h i c a l p e r s p e c t i v e s on n u r s i n g dying p a t i e n t s i n a c r i t i c a l care s e t t i n g , as w e l l as nurses' responses to t h e i r p e r s p e c t i v e s . The design i n v o l v e d a phenomenological approach, with u n s t r u c t u r e d i n t e r v i e w s with e i g h t c r i t i c a l care nurses used to generate data. The r e s u l t s i n d i c a t e d t h a t nurses' e t h i c a l p e r s p e c t i v e s centered around a theme of s e n s e l e s s n e s s ; a s e n s e l e s s decision-making process, the experiences of p a t i e n t s and f a m i l y members as s e n s e l e s s , and nurses' a c t i v i t i e s as s e n s e l e s s . Senselessness i l l u s t r a t e d the m u l t i p l e e t h i c a l dilemmas inherent i n nurses' e x p e r i e n c e s . Nurses' e t h i c a l p e r s p e c t i v e s a l s o i n v o l v e d t h e i r attempts to cope with s e n s e l e s s n e s s by f i n d i n g new meanings through s h i f t i n g focus to p a t i e n t comfort, support of the f a m i l y , and to nurses' p e r s o n a l p h i l o s o p h i e s . The s i t u a t i o n a l context of nurses' p e r s p e c t i v e s was explored i n terms of i n f l u e n c e s on t h e i r p e r s p e c t i v e s . T h i s study supports other recent n u r s i n g r e s e a r c h i d e n t i f y i n g p r o l o n g a t i o n of the process of dying as a s i g n i f i c a n t e t h i c a l problem engendering moral d i s t r e s s . i i i Table of Contents Page Ab s t r a c t i i Table of Contents i i i L i s t of F i g u r e s v i i Acknowledgements v i i i CHAPTER ONE: INTRODUCTION CONCEPTUALIZATION OF THE PROBLEM 1 Summary of the C o n c e p t u a l i z a t i o n . . . . 8 PROBLEM STATEMENT 9 PURPOSES OF THE STUDY 10 METHODOLOGICAL APPROACH 10 OPERATIONAL DEFINITIONS 12 ASSUMPTIONS 14 LIMITATIONS 14 CHAPTER TWO: REVIEW OF RELATED LITERATURE INTRODUCTION 16 PROLONGATION OF THE PROCESS OF DYING AS AN ETHICAL PROBLEM 16 I n t r o d u c t i o n 16 Related E t h i c a l Issues . 20 D e f i n i t i o n and Determination of Death 20 Euthanasia 22 Treatment Abatement 27 Death with D i g n i t y 30 Summary of Related E t h i c a l Issues . 32 i v T a b l e o f C o n t e n t s , (Cont'd) Page CHAPTER TWO: C o n t ' d R e l a t e d E t h i c a l Research 33 E a r l y S t u d i e s 34 S t u d i e s on R e s u s c i t a t i o n 41 Recent S t u d i e s 47 MORAL REASONING 55 I n t r o d u c t i o n 55 T h e o r i e s o f Moral Development 56 N u r s i n g Research on Mor a l Reasoning . . . 59 A p p l i c a t i o n o f K o h l b e r g 1 s Model . . 59 A l t e r n a t e Approaches t o Mor a l Reasoning 69 Summary of N u r s i n g Research on Mora l Reasoning 14 SUMMARY 76 CONCLUSIONS 79 CHAPTER THREE: METHODOLOGY INTRODUCTION 82 SELECTION OF THE STUDY GROUP 82 I n t r o d u c t i o n 82 C r i t e r i a f o r P a r t i c i p a t i o n 83 Procedure f o r P a r t i c i p a n t S e l e c t i o n . . . 85 C h a r a c t e r i s t i c s o f the P a r t i c i p a n t s . . . 87 ETHICAL CONSIDERATIONS 88 DATA COLLECTION 89 DATA ANALYSIS 91 T a b l e o f C o n t e n t s , ( C o n t ' d ) Page CHAPTER FOUR: PRESENTATION & DISCUSSION OF ACCOUNTS INTRODUCTION 94 CONSTRUCTION OF ACCOUNTS 98 INTERPRETATION AND DISCUSSION OF ACCOUNTS . . 110 Theme of Senselessness 110 I n t r o d u c t i o n 110 A Senseless Decision-Making Process. 113 In f l u e n c e s on a Senseless D e c i s i o n -Making Process 139 Experiences of P a t i e n t s and F a m i l i e s as Senseless 143 In f l u e n c e s on Nurses' P e r s p e c t i v e s of Experiences of P a t i e n t s and F a m i l i e s as Senseless 154 Nurses' A c t i v i t i e s as Senseless . . 158 In f l u e n c e s on Nurses' P e r s p e c t i v e s of T h e i r A c t i v i t i e s as Senseless . 161 F i n d i n g New Meanings 163 I n t r o d u c t i o n 163 Focus on P a t i e n t Comfort 164 In f l u e n c e s on Nurses' Focus on P a t i e n t Comfort 168 Focus on Support of the Family . . . 172 In f l u e n c e s on Nurses' Focus on Support of the Family 185 Focus on Personal Philosophy . . . . 199 In f l u e n c e s on Nurses' Focus on Personal Philosophy 202 E v o l v i n g Meanings 208 SUMMARY 211 Theme of Senselessness F i n d i n g New Meanings E v o l v i n g Meanings . . 211 214 217 v i T able o f Contents, (Cont'd) Page CHAPTER FIVE: CONCLUSIONS, IMPLICATIONS AND  RECOMMENDATIONS FOR FURTHER STUDY CONCLUSIONS 219 IMPLICATIONS 223 Nursing Education 223 Nursing P r a c t i c e 226 RECOMMENDATIONS FOR FURTHER RESEARCH . . . . . 228 REFERENCES 232 APPENDICES: Appendix A: Advertisement 254 Appendix B: Information and Consent 256 Appendix C: Agency Consent Form 260 Appendix D: Sample T r i g g e r Questions . . . . 262 V l l L i s t o f F i g u r e s P a g e F i g u r e 1. N u r s e s ' E t h i c a l P e r s p e c t i v e s o n N u r s i n g D y i n g P a t i e n t s i n a C r i t i c a l C a r e S e t t i n g 97 v i i i A c k n o w l e d g e m e n t s T h i s t h e s i s has been a journey of p e r s o n a l and p r o f e s s i o n a l growth; a journey g r e a t l y enhanced by the people who have helped me along the way. To begin with, I wish to acknowledge the e i g h t nurses who p a r t i c i p a t e d i n t h i s study f o r t h e i r commitment and support. Secondly, I wish to acknowledge the members of my T h e s i s Committee, Dr. Joan Anderson and Ms. M. J u d i t h Lynam f o r t h e i r i n s p i r a t i o n and nurturance. I a l s o r e c e i v e d s u b s t a n t i a l support from many f r i e n d s and c o l l e a g u e s i n n u r s i n g . In p a r t i c u l a r , I wish to thank Mrs. Margret Fenton, Mrs. Ruth Lamb, Dr. Anna Omery, and Ms. J u d i t h W i l k i n s o n f o r s h a r i n g t h e i r work with me. Thanks are f u r t h e r due to my t y p i s t , Mrs. Susan Skinner, who has been l i k e my r i g h t arm . throughout t h i s study. F i n a l l y , I know that I owe a tremendous amount to the love and a s s i s t a n c e I have r e c e i v e d from my f a m i l y . My p a r t n e r , John, deserves a very s p e c i a l a ccolade. We s t i l l b e l i e v e that the world has a deeper meaning than what i s apparent, and that t h e r e i n the human s o u l f i n d s i t s u l t i m a t e harmony and peace. (Tagore, 1913/1961, p. 196) 1 CHAPTER ONE: INTRODUCTION C o n c e p t u a l i z a t i o n o f the Problem The p r a c t i c e of nu r s i n g i n c r i t i c a l care s e t t i n g s has evolved i n concert with a trend towards s p e c i a l i z a t i o n i n the nur s i n g p r o f e s s i o n as a whole (Baumgart, 1985; Canadian Nurses' A s s o c i a t i o n , 1981; Lane, 1985). C r i t i c a l care n u r s i n g has been d e f i n e d as "the n u r s i n g of people undergoing l i f e - t h r e a t e n i n g p h y s i o l o g i c a l c r i s e s " (Holloway, 1984, p . l ) . Within the context of these c r i s e s , emphasis i s placed on nurses' decision-making s k i l l s to interve n e i n the p a t i e n t ' s responses to i l l n e s s , i n j u r y and treatment (Holloway, 1984; Hudak, G a l l o & Lohr, 1986; Kinney, 1981). C h a r a c t e r i s t i c s of c r i t i c a l care n u r s i n g as a s p e c i a l t y i n c l u d e a mandate f o r r e c o g n i t i o n and a p p r e c i a t i o n of the i n d i v i d u a l ' s wholeness, uniqueness and s i g n i f i c a n t r e l a t i o n s h i p s (American A s s o c i a t i o n of C r i t i c a l Care Nurses, 1981). The e v o l u t i o n of c r i t i c a l care n u r s i n g has a l s o p a r a l l e l e d s p e c i a l i z a t i o n i n the h e a l t h care system with i t s concurrent t e c h n o l o g i c a l i n n o v a t i o n s (Fagerhaugh, S t r a u s s , Suczek & Wiener, 1980; G i l l i s , 1985; Shaw, 1984). Health care s p e c i a l i z a t i o n has been d e s c r i b e d as c r e a t i n g an exploding technology that has 2 fragmented and dehumanized p a t i e n t care ( B e n o l i e l , 1983; Fagerhaugh et a l . , 1980; G i l l i s , 1985; Kinney, 1981; Levine, 1977). C r i t i c a l care n u r s i n g has t h e r e f o r e developed as a nur s i n g s p e c i a l t y f o r p a t i e n t s undergoing l i f e - t h r e a t e n i n g p h y s i o l o g i c a l c r i s e s , with a mandate to provide care to the whole p a t i e n t , but f i n d s i t s e l f o p e r a t i n g w i t h i n a system that has become fragmented and dehumanized. Of p a r t i c u l a r concern i n the a p p l i c a t i o n of technology w i t h i n t h i s h e a l t h - c a r e system i s the un d e r l y i n g assumption of p a t i e n t death as f a i l u r e . As a r e s u l t , p r o l o n g a t i o n of l i f e takes plac e f o r many p a t i e n t s i n c r i t i c a l care s e t t i n g s ( K i e l y , 1985; Weil & Rackow, 1984; Woods, 1984). P r o l o n g a t i o n of l i f e o f t e n i n v o l v e s i n v a s i v e measures such as i n t u b a t i o n , v e n t i l a t i o n and hemodynamic monitoring, as w e l l as constant o b s e r v a t i o n and i n t r u s i o n by a v a r i e t y of perso n n e l . T h i s i s best termed p r o l o n g a t i o n of the process of dying, f o r d e s p i t e such i n t e n s i v e measures, many p a t i e n t s i n c r i t i c a l care s e t t i n g s e v e n t u a l l y d i e . To i l l u s t r a t e ; i n a study determining p r o g n o s t i c i n d i c a t o r s , i t was found that a d u l t p a t i e n t s with r e s p i r a t o r y f a i l u r e r e q u i r i n g v e n t i l a t o r y support had a m o r t a l i t y r a t e of 66%, those over s i x t y - f i v e years of age had a m o r t a l i t y r a t e of 85%, and p a t i e n t s with 3 multi-system organ f a i l u r e had a m o r t a l i t y r a t e of 99% ( N a t i o n a l Heart, Lung and Blood I n s t i t u t e , 1979, pp. 19-36). Given c u r r e n t u n c e r t a i n t y i n the medical community as to establishment of c r i t e r i a f o r the a p p l i c a t i o n of technology, e l d e r l y p a t i e n t s , p a t i e n t s with multisystem f a i l u r e , and even p a t i e n t s with t e r m i n a l i l l n e s s e s , c o n s t i t u t e a s i g n i f i c a n t number of those i n c r i t i c a l care s e t t i n g s ( C a s s e l l , 1986; E l o v i t z , 1981; Fineberg & H i a t t , 1979; Jackson, 1984; R u s s e l l , 1983; T h i b a u l t , Mulley, Barnett, G o l d s t e i n , Reder, Sherman & Skinner, 1980). Hence, a s i g n i f i c a n t number of p a t i e n t s i n c r i t i c a l care s e t t i n g s experience p r o l o n g a t i o n of the process of d y i n g . C r i t i c a l care nurses t h e r e f o r e f i n d themselves p a r t i c i p a t i n g i n the a p p l i c a t i o n of intense technology d e s p i t e t h e i r knowledge that a s i g n i f i c a n t number of t h e i r p a t i e n t s w i l l d i e . The c o s t s of the a p p l i c a t i o n of intense technology have been d e s c r i b e d as i n c l u d i n g l o s s of d i g n i t y and dehumanization of nurses' dying p a t i e n t s ( B e n o l i e l , 1981; Mauksch, 1975; Netsky, 1979; Roberts, 1976; Woods, 1984). I t i s f u r t h e r i n d i c a t e d in the l i t e r a t u r e that p a r t i c i p a t i o n i n p r o l o n g a t i o n of the process of dying i s s t r e s s f u l f o r c r i t i c a l care nurses, and c o n t r i b u t e s to t h e i r burnout and a t t r i t i o n ( B a i l e y , S t e f f e n & Grout, 1980; Cowles, 1984; Davis, 4 D. , 1986 ; Dear, Weisman, Alexander & Chase, 1982; Holloway, 1984; Mendenhall, 1982; M i l l a r , 1980). The sources of nurses' s t r e s s are ap p a r e n t l y not that t h e i r p a t i e n t s d i e , but r a t h e r the manner i n which they d i e . Nurses are seen to be unable to provide ways of p r e s e r v i n g human values of autonomy and d i g n i t y f o r t h e i r dying p a t i e n t s ( B e n o l i e l , 1981; Canadian Nurses' A s s o c i a t i o n , 1985). T h i s may r e f l e c t a c o n f l i c t between the ideology of p a t i e n t cure and the id e o l o g y of p a t i e n t care ( B e n o l i e l , 1981). I t should be noted at t h i s p o i n t that the l i t e r a t u r e i s unclear with regards to how p h y s i c i a n s and other h e a l t h care p r o f e s s i o n a l s are a f f e c t e d by the a p p l i c a t i o n of intense technology. The l i n e of argument presented thus f a r i s that the a p p l i c a t i o n of intense technology to prolong the process of dying of p a t i e n t s i s d e s c r i b e d i n the nur s i n g l i t e r a t u r e as being s t r e s s f u l f o r c r i t i c a l care nurses, and may c o n t r i b u t e to t h e i r burnout and a t t r i t i o n . A s p e c i f i c area of concern i s the apparent i n a b i l i t y of c r i t i c a l care nurses to provide care f o r t h e i r dying p a t i e n t s that i s congruent with human values of autonomy and d i g n i t y . I t i s p a r t i c u l a r l y r e l e v a n t to c o n s i d e r p r o l o n g a t i o n of the process of dying i n terms of an 5 e t h i c a l problem. C u r t i n (1982a) d e f i n e s an e t h i c a l problem as one t h a t : (a) cannot be r e s o l v e d s o l e l y through an appeal to e m p i r i c a l data; (b) i n v o l v e s c o n f l i c t of values and u n c e r t a i n t y about the amount or type of i n f o r m a t i o n needed to make a d e c i s i o n ; (c) the answer reached w i l l have profound relevance f o r s e v e r a l areas of human concern (pp. 38-39). In accordance with C u r t i n ' s d e f i n i t i o n , the l i t e r a t u r e p r e v i o u s l y presented r e f l e c t s an e t h i c a l problem f o r s e v e r a l reasons. F i r s t , p r o l o n g a t i o n of the process of dying in c r i t i c a l care s e t t i n g s may present an e t h i c a l problem to nurses because e m p i r i c a l data do not support the e f f e c t i v e n e s s of intense technology f o r many p a t i e n t s , or provide g u i d e l i n e s f o r when such measures are a p p r o p r i a t e . Secondly, a c o n f l i c t has been d e s c r i b e d as e x i s t i n g between the ideology of p a t i e n t cure and the ide o l o g y of p a t i e n t c a r e . F i n a l l y , i t i s i n d i c a t e d that d e c i s i o n s to pursue or d i s c o n t i n u e the a p p l i c a t i o n of intense technology w i l l have profound relevance f o r i s s u e s such as q u a l i t y of l i f e , e uthanasia, and d i s t r i b u t i o n of h e a l t h care r e s o u r c e s (Cowles, 1984; C u r t i n , 1982; Mendenhall, 1982; Weil & Rackow, 1984; Woods, 1984). I m p l i c i t i n the previous d i s c u s s i o n of the e t h i c a l problem i s an assumption about nurses' moral 6 development. Nursing i s seen as a moral a r t , advocating u n i v e r s a l values of human autonomy and d i g n i t y ( C u r t i n , 1982b, Gadow, 1980/1983; Murphy, 1983). I t i s assumed that nurses should be mo r a l l y developed persons adhering to those u n i v e r s a l values (Cameron, 1986; Crisham, 1981; K e t e f i a n , 1981a, 1981b, 1985; Mahon & Fowler, 1979). Nurses as mo r a l l y developed persons are u s u a l l y d e s c r i b e d i n terms of Kohlberg's (1972) theory of moral development. Kohlberg d e s c r i b e s optimum moral development as m o r a l i t y "of i n d i v i d u a l p r i n c i p l e s of conscience that have l o g i c a l comprehensiveness and u n i v e r s a l i t y . Highest value [ s i c ] placed on human l i f e , e q u a l i t y , and d i g n i t y " (p. 15). Thus i t would appear that nurses f i n d themselves with an e t h i c a l problem because p r o l o n g a t i o n of the process of dying i n c r i t i c a l care c o n f l i c t s with nurses' values of human autonomy and d i g n i t y . However, there i s l i t t l e w r i t t e n that a c t u a l l y e x p lores e t h i c a l s i t u a t i o n s faced by nurses with t h e i r dying p a t i e n t s (Crisham, 1981; Davis, A., 1981; Davis & Aroskar, 1983; Fenton, 1987; Ornery, 1983b; W i l k i n s o n , 1985). Furthermore, there i s some i n d i c a t i o n that moral development, and hence moral reasoning, may not be a simple matter of a p p l y i n g u n i v e r s a l v a l u e s . The 7 p r e v i o u s l y c i t e d argument that nurses l o o k i n g a f t e r dying p a t i e n t s i n c r i t i c a l care w i l l always f i n d themselves with an e t h i c a l problem i s founded p r i m a r i l y on Kohlberg's (1972) i n t e r p r e t a t i o n of u n i v e r s a l v a l u e s . Kohlberg's (1972) theory i s based on r e s e a r c h with adolescent boys using h y p o t h e t i c a l s i t u a t i o n s (Munhall, 1983). In c r i t i q u e of Kohlberg's theory, G i l l i g a n (1977) i n d i c a t e s that women's reasoning i n e t h i c a l i s s u e s i s d i f f e r e n t from that of men. Women are de s c r i b e d as being concerned with a m o r a l i t y of " r e s p o n s i b i l i t y and ca r e " ( G i l l i g a n , p. 516). G i l l i g a n e l a b o r a t e s on how t h i s d i f f e r e n c e i n f l u e n c e s women's reasoning. She s t a t e s that "women's judgements are t i e d to f e e l i n g s of empathy and compassion and are concerned more with the r e s o l u t i o n of ' r e a l - l i f e ' as opposed to h y p o t h e t i c a l dilemmas" ( G i l l i g a n , p. 490). Women, and hence the m a j o r i t y of nurses, thus may view e t h i c a l s i t u a t i o n s i n a v a r i e t y of ways depending on how they i n t e r p r e t t h e i r r e s p o n s i b i l i t y and care i n the r e a l - l i f e s i t u a t i o n (Davis, D., 1986; G i l l i g a n , 1978; Munhall, 1983; Ornery, 1983b, 1985). The v a l i d i t y of Kohlberg's theory of moral development has been f u r t h e r questioned not on l y because i t f a i l s to address the m o r a l i t y of women. 8 Ko h l b e r g 1 s work i s con s i d e r e d to l a c k c r o s s - c u l t u r a l r e l e v a n c e , and f a i l s to d i s t i n g u i s h moral choice from moral a c t i o n (Ornery, 1983b; S u l l i v a n , 1977; W i l k i n s o n , 1985). S u l l i v a n presents h i s c r i t i c i s m s along these l i n e s s u c c i n c t l y when he s t a t e s : . . . K o h l b e r g 1 s s t r u c t u r a l conception of m o r a l i t y tends to c r e a t e dichotomies when t r e a t i n g the r e l a t i o n s h i p s between thought and a c t i o n , form and content, and the a b s t r a c t and the concrete . . . . [he] tends to separate the 'emotional' l i f e from the ' i n t e l l e c t u a l ' l i f e where m o r a l i t y i s concerned (p. 15). The r e f o r e , i n d i v i d u a l nurses may look at each dying p a t i e n t ' s s i t u a t i o n i n terms of how they view t h e i r i n t e r p e r s o n a l r e s p o n s i b i l i t y , t h e i r c u l t u r a l v a l u e s and b e l i e f s , the concrete f a c t s of the s i t u a t i o n , . s i t u a t i o n a l c o n s t r a i n t s , and t h e i r own f e e l i n g s (Cowles, 1984; Fenton, 1987; Ornery, 1983b; W i l k i n s o n , 1985). The i m p l i c i t assumption i n the l i t e r a t u r e that nurses l o o k i n g a f t e r dying p a t i e n t s i n a c r i t i c a l care s e t t i n g w i l l always f i n d themselves with an e t h i c a l problem c o n f l i c t s with t h i s p l u r a l i s t i c view of moral r e a s o n i n g . Summary of the Conceptualization C r i t i c a l care n u r s i n g has developed as a n u r s i n g 9 s p e c i a l t y w i t h i n the context of a h e a l t h care system that has become fragmented and dehumanized. Within that system, p r o l o n g a t i o n of the process of dying of p a t i e n t s i s a f r e q u e n t l y o c c u r r i n g process that nurses a p p a r e n t l y f i n d s t r e s s f u l and may l e a d to t h e i r burnout and a t t r i t i o n . P r o l o n g a t i o n of the process of dying has been viewed as c r e a t i n g an e t h i c a l problem f o r nurses, with the i m p l i c i t assumption i n the l i t e r a t u r e that nurses w i l l always f i n d p r o l o n g a t i o n of the process of dying c o n f l i c t i n g with t h e i r values of human autonomy and d i g n i t y . However, i n l i g h t of a r e l a t i v e l a c k of e t h i c a l r e s e a r c h and c o n f l i c t i n g t h e o r i e s of moral reasoning, i t has been argued by t h i s i n v e s t i g a t o r that we cannot assume what i n d i v i d u a l nurse's e t h i c a l p e r s p e c t i v e s w i l l be. Problem Statement The l i t e r a t u r e has i n d i c a t e d that p r o l o n g a t i o n of the process of dying f o r p a t i e n t s i n c r i t i c a l care s e t t i n g s poses an e t h i c a l problem f o r nurses. However, there i s a r e l a t i v e l a c k of e t h i c a l r e s e a r c h d e s c r i b i n g how nurses i n t e r p r e t the e t h i c s of prolonged dying i n c r i t i c a l care s e t t i n g s . Furthermore, the l i t e r a t u r e presents c o n f l i c t i n g viewpoints i n r e l a t i o n to nurses' moral r e a s o n i n g . T h e r e f o r e , the r e s e a r c h q u e s t i o n f o r t h i s t h e s i s i s : 10 "What are nurses' e t h i c a l p e r s p e c t i v e s on n u r s i n g dying p a t i e n t s i n a c r i t i c a l care s e t t i n g ? " Purposes o f the Study Given that there i s a l a c k of l i t e r a t u r e d e t a i l i n g the experiences of nurses i n regard to t h e i r dying p a t i e n t s , the purpose of the author's study w i l l be to d e s c r i b e nurses' e t h i c a l p e r s p e c t i v e s on n u r s i n g dying p a t i e n t s in a c r i t i c a l care s e t t i n g . Also given that p r o l o n g a t i o n of the process of dying has been d e s c r i b e d as s t r e s s f u l and l e a d i n g to burnout and a t t r i t i o n of c r i t i c a l care nurses, i t w i l l be a purpose of t h i s study to work towards a b e t t e r understanding of nurses' responses to t h e i r e t h i c a l p e r s p e c t i v e s . M e t h o d o l o g i c a l Approach The methodological approach f o r t h i s r e s e a r c h has been chosen to provide a f u l l and accurate d e s c r i p t i o n of i n d i v i d u a l nurses' e t h i c a l p e r s p e c t i v e s . That approach has been d e r i v e d from the branch of philosophy known as e x i s t e n t i a l phenomenology. The emphasis i n e x i s t e n t i a l i s m i s upon the conduct of l i f e ; the emphasis i n phenomenology i s upon the problems of knowledge and meaning. Each i s t h e r e f o r e p a r t i a l , by i t s e l f , but t h e i r f u s i o n has r e s u l t e d i n a humanistic philosophy whose breadth i s s t i l l but l i t t l e known i n t h i s country (Lawrence 11 & O'Connor, 1967, p. 1). Schutz (1932/1967a, 1954/1967b) pioneered the a p p l i c a t i o n of e x i s t e n t i a l phenomenology i n the s o c i a l s c i e n c e s . Working w i t h i n a f i e l d known as i n t e r p r e t i v e s o c i o l o g y he s t a t e d that ". . . a l l s c i e n t i f i c e x p l a n a t i o n of the s o c i a l world can, and f o r c e r t a i n purposes must, r e f e r to the s u b j e c t i v e meaning of the a c t i o n s of human beings from which the s o c i a l r e a l i t y o r i g i n a t e d " (Schutz, 1954/1967b, p. 387). That s o c i a l r e a l i t y i s i n t e r s u b j e c t i v e , and hence must be understood through a process of intercommunication (Schutz, 1932/1967a, 1954/1967b). T h e r e f o r e , phenomenology as a methodology focuses on "experiences as shared and understood by the p a r t i c i p a n t s and the observer" ( R i s t , 1979, p. 20). Given phenomenology 1s emphasis on meaning w i t h i n an i n t e r s u b j e c t i v e s o c i a l r e a l i t y , the i n v e s t i g a t o r f e e l s that t h i s approach w i l l best explore the m u l t i p l e f a c e t s of nurses' e t h i c a l p e r s p e c t i v e s , f o r example how nurses f e e l about l o o k i n g a f t e r dying p a t i e n t s and how they i n t e r p r e t s i t u a t i o n a l c o n s t r a i n t s . In support of t h i s study's phenomenological approach, i t i s i n t e r e s t i n g to note that i n S u l l i v a n ' s (1977) c r i t i q u e of Kohlberg's (1982) theory, he s t a t e s that phenomenologists have "adamantly defended" the 12 importance of the "concrete, i d i o s y n c r a t i c , and c o n t e x t u a l " (p. 19). I t i s these l a t t e r q u a l i t i e s that the i n v e s t i g a t o r wishes to e x p l o r e . The a p p l i c a t i o n of phenomenology as a methodology w i l l be d i s c u s s e d i n Chapter Three. At t h i s p o i n t i t should be noted that the choice of phenomenology as a methodology f o r t h i s t h e s i s f o l l o w s a paradigm s h i f t away from the o b j e c t i v e r e d u c t i o n i s m of the n a t u r a l s c i e n c e s towards a s u b j e c t i v e e x p l o r a t i o n of human experience ( G i o r g i , 1975a & b; Kuhn, 1970; Lawrence & O'Connor, 1967; Shutz, 1954/1967b; Zaner, 1978). Within n u r s i n g , phenomenology i s g a i n i n g i n c r e a s i n g acceptance as a means of studying the uniquely humanistic b a s i s of nursing p r a c t i c e (Anderson, 1981a, 1981b; Benner, 1985; Davis, A., 1973/1978; F i e l d & Morse, 1985; Knaack, 1984; Lynam & Anderson, 1986; Lynch-Sauer, 1985; Munhall, 1982a, 1982b; Munhall & O i l e r , 1986; O i l e r , 1982, 1986; Ornery, 1983a; Ray, 1985; Rieman, 1986). I t i s hoped that the use of phenomenology w i t h i n t h i s t h e s i s w i l l f u r t h e r add to our understanding of the humanistic b a s i s of n u r s i n g p r a c t i c e . O p e r a t i o n a l D e f i n i t i o n s The f o l l o w i n g i s a l i s t of o p e r a t i o n a l d e f i n i t i o n s f o r the terms used i n the r e s e a r c h q u e s t i o n : 13 Nurses' E t h i c a l P e r s p e c t i v e s - nurses' knowledge of and f e e l i n g s about t h e i r experiences c a r i n g f o r p a t i e n t s w i t h i n a s i t u a t i o n a l c o n t e x t . Includes nurses' p e r c e p t i o n s of t h e i r moral c h o i c e s and moral act i o n . Dying P a t i e n t s - P a t i e n t s who are e x p e r i e n c i n g p r o l o n g a t i o n of the process of d y i n g . P r o l o n g a t i o n i n v o l v e s i n v a s i v e measures such as v e n t i l a t i o n and hemodynamic monitoring as w e l l as constant o b s e r v a t i o n and i n t r u s i o n by a v a r i e t y of p e r s o n n e l . Dying w i l l be d e f i n e d in terms of nurses' understanding that the p a t i e n t w i l l not s u r v i v e the c r i t i c a l care u n i t or the c u r r e n t h o s p i t a l i z a t i o n . C r i t i c a l Care S e t t i n g - C r i t i c a l care s e t t i n g s i n c l u d e those s p e c i a l i z e d u n i t s w i t h i n h o s p i t a l s that are s t r u c t u r e d to d e a l with l i f e - t h r e a t e n i n g p h y s i o l o g i c a l c r i s e s . These u n i t s i n c l u d e i n t e n s i v e care u n i t s (ICU's), coronary care u n i t s , s u r g i c a l i n t e n s i v e care u n i t s , post-open heart recovery u n i t s , p e d i a t r i c i n t e n s i v e care u n i t s , and neonatal i n t e n s i v e care u n i t s . P r o l o n g a t i o n of the process of dying takes p l a c e most f r e q u e n t l y 14 i n g eneral a d u l t ICU's. Assumptions The f i r s t assumption of t h i s r e s e a r c h i s that nursing i s a moral a r t , advocating u n i v e r s a l values of human autonomy and d i g n i t y . Secondly, i t i s assumed that nurses w i l l i n t e r p r e t the e t h i c s i n v o l v e d i n nursing dying p a t i e n t s i n a c r i t i c a l care s e t t i n g according to the context i n which they view the s i t u a t i o n and t h e i r personal v a l u e s and b e l i e f s . T h i r d l y , i t i s assumed that the a p p l i c a t i o n of technology w i l l continue to r e s u l t i n the p r o l o n g a t i o n of the process of dying of many p a t i e n t s i n c r i t i c a l care s e t t i n g s . F o u r t h l y , i t i s assumed that no one p r o f e s s i o n a l group i s r e s p o n s i b l e f o r the a p p l i c a t i o n of technology, but r a t h e r the a p p l i c a t i o n r e s u l t s from a s o c i e t a l emphasis on s p e c i a l i z a t i o n and t e c h n o l o g i c a l innovat i o n . L i m i t a t i o n s A l i m i t to the general a p p l i c a t i o n of t h i s study w i l l be that nurses' e t h i c a l p e r s p e c t i v e s w i l l be explored o n l y i n r e l a t i o n to the e t h i c a l problem of p r o l o n g a t i o n of the process of d y i n g . Other p r e s s i n g e t h i c a l problems i n nur s i n g w i l l not be d i r e c t l y addressed. Secondly, l i m i t i n g the focus to c r i t i c a l care s e t t i n g s w i l l not address nurses' p e r s p e c t i v e s of e t h i c a l problems w i t h i n other areas of n u r s i n g p r a c t i c e . 16 CHAPTER TWO: REVIEW OF RELATED LITERATURE I n t r o d u c t i o n The purpose of t h i s chapter i s to provide a review of l i t e r a t u r e r e l a t e d to the c o n c e p t u a l i z a t i o n of the problem statement i n Chapter One. P e r t i n e n t r e s e a r c h and t h e o r e t i c a l works w i l l be explored to f u r t h e r s u b s t a n t i a t e the c o n c e p t u a l i z a t i o n of the problem statement. In Chapter Four: P r e s e n t a t i o n and D i s c u s s i o n of Accounts, the i n v e s t i g a t o r w i l l take d i r e c t i o n from the accounts to re-examine the l i t e r a t u r e reviewed and to i n c o r p o r a t e a d d i t i o n a l works to enhance the d i s c u s s i o n . Within Chapter Two: Review of Related L i t e r a t u r e , the i n v e s t i g a t o r w i l l present p e r t i n e n t r e s e a r c h and t h e o r e t i c a l works i n a format p a r a l l e l to the c o n c e p t u a l i z a t i o n i n Chapter One. The l i t e r a t u r e review w i l l t h e r e f o r e c e n t r e around the e t h i c a l r a m i f i c a t i o n s of p r o l o n g a t i o n of the process of dying, and moral r e a s o n i n g . P r o l o n g a t i o n of the Process of Dying  as an E t h i c a l Problem I n t r o d u c t i o n Chapter One presented p r o l o n g a t i o n of the process of dying i n terms of an e t h i c a l problem. In order to 17 explore the e t h i c a l r a m i f i c a t i o n s of p r o l o n g a t i o n of the process of dying more f u l l y , p e r t i n e n t l i t e r a t u r e w i l l be explored i n terms of r e l a t e d e t h i c a l i s s u e s and r e l a t e d e t h i c a l r e s e a r c h . P r o l o n g a t i o n of the process of dying was p o s i t e d as an e t h i c a l problem i n Chapter One i n accordance with C u r t i n ' s (1982a) d e f i n i t i o n . In order to place p r o l o n g a t i o n of the process of dying more f u l l y i n an e t h i c a l c ontext, s e l e c t e d e t h i c a l l i t e r a t u r e w i l l be reviewed at t h i s p o i n t to c l a r i f y some r e l e v a n t terms. The f i e l d of e t h i c s i s founded i n a branch of human knowledge known as phi l o s o p h y . Philosophy can be d e f i n e d as " c r i t i c a l r e f l e c t i o n on the j u s t i f i c a t i o n of b a s i c human b e l i e f s and a n a l y s i s of b a s i c concepts i n terms of which such b e l i e f s are expressed" (Edwards & Pap, 1973, p. x i v ) . As a branch of philosophy, e t h i c s focuses c r i t i c a l r e f l e c t i o n upon " a c t i o n s and events from the standpoint of r i g h t and wrong, good and e v i l , moral value and moral d i s v a l u e , and . . . the r e s o l u t i o n to seek the t r u l y v a l u a b l e i n l i f e . . . " ( K e l l y , E., 1980, p. 13). Morals r e f e r to customs or h a b i t , and are l o c a t e d w i t h i n a s o c i a l e n t e r p r i s e (Davis & Aroskar, 1983, p. 2). E t h i c s and morals are o f t e n used i n t e r c h a n g e a b l y (Davis & Aroskar; S t o r c h , 1982), although Jameton (1984) notes that " e t h i c s i s 18 the more formal and t h e o r e t i c a l term, morals the more informal and p e r s o n a l term" (p. 5). Values can be d e f i n e d as " a f f e c t i v e d i s p o s i t i o n [ s ] towards a person, o b j e c t , or i d e a " ( S t e e l e , 1983, p. 1). The f i e l d of h e a l t h care e t h i c s f u n c t i o n s : (1) to s e n s i t i z e or r a i s e the consciousness of h e a l t h p r o f e s s i o n a l s (and the l a y p u b l i c ) concerning e t h i c a l i s s u e s found i n h e a l t h care s e t t i n g s and p o l i c i e s and (2) to s t r u c t u r e the i s s u e s so that e t h i c a l l y r e l e v a n t threads of complex s i t u a t i o n s can be drawn out (Davis & Aroskar, 1983, p. 4). P r o l o n g a t i o n of the process of dying, then, a r i s e s in the context of c r i t i c a l j u s t i f i c a t i o n of human b e l i e f s i n an attempt to determine moral value or d i s v a l u e of the performance of the h e a l t h care system. In accordance with Davis and Aroskar's (1983) d e f i n i t i o n of h e a l t h care e t h i c s , t h i s i n v e s t i g a t o r w i l l attempt to present the i s s u e s w i t h i n which p r o l o n g a t i o n of the process of dying i s embedded so that e t h i c a l l y r e l e v a n t threads of complex s i t u a t i o n s can be drawn out. The use of terms such as e t h i c a l i s s u e s , e t h i c a l problems, and e t h i c a l dilemmas i s not w e l l s t a n d a r d i z e d in the e t h i c a l or n u r s i n g l i t e r a t u r e . For the purposes 19 of t h i s t h e s i s , C u r t i n ' s (1982a) d e f i n i t i o n of an e t h i c a l problem has been accepted. An important f e a t u r e of C u r t i n ' s d e f i n i t i o n i s the emphasis on the n e c e s s i t y to make some kind of d e c i s i o n ( s ) . P r o l o n g a t i o n of the process of dying was presented i n Chapter One as c o n s t i t u t i n g an e t h i c a l problem, and hence i s a problem that n e c e s s i t a t e s some kind of d e c i s i o n ( s ) . E t h i c a l i s s u e i s another term f r e q u e n t l y used i n the n u r s i n g l i t e r a t u r e . T h i s i n v e s t i g a t o r was unable to l o c a t e a d e f i n i t i o n of e t h i c a l i s s u e . Given a d i c t i o n a r y d e f i n i t i o n of is s u e as "a p o i n t of debate or co n t r o v e r s y " (Webster's Ninth New C o l l e g i a t e D i c t i o n a r y , 1985, p. 642), and the pre v i o u s e t h i c a l d e f i n i t i o n s , t h i s i n v e s t i g a t o r w i l l use the term e t h i c a l issue to mean a po i n t of debate or c o n t r o v e r s y i n the de t e r m i n a t i o n of moral value or d i s v a l u e . E t h i c a l i s s u e s w i l l t h e r e f o r e i n c l u d e some of the more a b s t r a c t n o t i o n s w i t h i n which the problem of p r o l o n g a t i o n of dying i s subsumed. Drawing from a system of c a t e g o r i z a t i o n from a recent t e x t on the e t h i c a l i s s u e s of death and dying (Wier, 1986a), the is s u e s of d e f i n i t i o n and de t e r m i n a t i o n of death, euthanasia, and treatment abatement w i l l be addressed. 20 R e l a t e d E t h i c a l Issues The i n t e n t of t h i s s e c t i o n of Chapter Two i s to present s e l e c t e d e t h i c a l i s s u e s so that e t h i c a l l y r e l e v a n t threads of complex p r o l o n g a t i o n of the process of dying s i t u a t i o n s can be drawn out. The e x p l o r a t i o n of r e l a t e d i s s u e s w i l l o f t e n o v e r l a p from e t h i c a l i n t o l e g a l r a m i f i c a t i o n s . As noted by Rozovsky and Rozovsky (1983), law " i n v o l v e s the c o n t r o l of r e l a t i o n s h i p s among people whereas e t h i c s examines what i s r i g h t and wrong . . ." (p. 290). Storch (1982) observes that there i s a " c l o s e , a l b e i t uneasy, r e l a t i o n s h i p between law and e t h i c s " because l e g a l d e c i s i o n s may appeal to e t h i c a l p r i n c i p l e s (p. 17), while Rozovsky and Rozovsky f u r t h e r i n d i c a t e that e t h i c a l debate may "help to reshape the l e g a l response . . . " (p. 291). The r e l a t i o n s h i p between law and e t h i c s i s thus best termed r e c i p r o c a l . The e x p l o r a t i o n of r e l a t e d i s s u e s to f o l l o w w i l l r e f l e c t that r e c i p r o c a l r e l a t i o n s h i p . D e f i n i t i o n and Determination of Death. The d e f i n i t i o n and d e t e r m i n a t i o n of death has been the focus of a great d e a l of a t t e n t i o n i n the l e g a l and e t h i c a l l i t e r a t u r e f o r the past two decades. Given the exploding technology spoken of i n Chapter One, developments " i n r e s u s c i t a t i o n techniques and the a b i l i t y of machines to take over such v i t a l f u n c t i o n s 21 as spontaneous b r e a t h i n g c h a l l e n g e t r a d i t i o n a l ways of diagnosing death" (Lamb, D., 1985, p. [ i i ] ) . Diagnosing or determining death with the a p p l i c a t i o n of t r a d i t i o n a l b i o m e d i c a l c r i t e r i a has thus become p r o b l e m a t i c a l . In response to t e c h n o l o g i c a l changes, the t r a d i t i o n a l b i o m e d i c a l c r i t e r i a of c e s s a t i o n of blood c i r c u l a t i o n and r e s p i r a t i o n to determine death have been supplemented with the c r i t e r i a of b r a i n death (Lamb, D., 1985; Law Reform Commission of Canada, 1981; Walters, 1982b). As a consequence of the adoption of these new c r i t e r i a , p a t i e n t s diagnosed as b r a i n dead are u s u a l l y allowed to d i e , sometimes a f t e r p a r t i c i p a t i o n i n the organ donation p r o c e s s . Those p a t i e n t s who do not f i t the newly e s t a b l i s h e d b i o m e d i c a l c r i t e r i a , however, are not d e f i n e d as dead or d y i n g . T h i s i n c l u d e s p a t i e n t s d i s c u s s e d i n Chapter One, who may be comatose, e l d e r l y , with multisystem f a i l u r e , and an almost absolute c e r t a i n t y of death. Hence, the adoption of p u r e l y b i o m e d i c a l c r i t e r i a : l e a ves f o r f u t u r e r e s o l u t i o n the even more d i f f i c u l t problems concerning the c o n d i t i o n s and procedures under which a d e c i s i o n may be reached to cease t r e a t i n g a t e r m i n a l p a t i e n t who does not meet the standards set f o r t h i n the s t a t u t o r y 22 ' d e f i n i t i o n of death' (Capron & Kass, 1972/1982, p. 299). Perhaps the d i f f i c u l t y i n r e a c h i n g a d e c i s i o n to cease t r e a t i n g a t e r m i n a l p a t i e n t who does not meet the c r i t e r i a r e f l e c t s a d i f f i c u l t y with the concept of death. D. Lamb (1985) s t a t e s that "the concept of death cannot be e x c l u s i v e l y determined by medical c r i t e r i a . T h i s i s because i t i s r e l a t e d to more general p h i l o s o p h i c a l b e l i e f s concerning the meaning of l i f e and death" (p. 9). Veatch (1976) a l s o expresses concern about the concept of death. He s t a t e s that "now that technology permits us to t r e a t the body organ by organ, c e l l by c e l l , we are f o r c e d to develop a more p r e c i s e understanding of what i t means to c a l l a person dead" (Veatch, p. 21). Euthanasia. The next e t h i c a l i s s u e to be d i s c u s s e d i s that of e u t h a n a s i a . Euthanasia has been the s u b j e c t of i n c r e a s i n g e t h i c a l and l e g a l debate over the past two decades. The debate ranges along "a continuum of i n t e r v e n t i o n f o r d e c i s i o n makers ranging from a s t r i c t ' s a n c t i t y of l i f e ' or antie.uthanasia view to p a s s i v e ( i n a c t i v e ) euthanasia to a c t i v e ethuanasia" (Davis & Aroskar, 1983, p. 141). Along t h i s continuum, the use of the term euthanasia i s o f t e n ambiguous ( C u r t i n , 1982c; Davis & Aroskar; Walters, 1982c; Weir, 1986c). 23 To examine the i s s u e of euthanasia r e q u i r e s some attempt to c l a r i f y the sources of ambiguity. The continuum of i n t e r v e n t i o n d e s c r i b e d above i s s t r u c t u r e d on an a c t i v e - p a s s i v e d i s t i n c t i o n . A c t i v e euthanasia i m p l i e s a d i r e c t a c t i o n to end another's l i f e , while pa s s i v e euthanasia i m p l i e s withdrawal of treatment measures (Walters, 1982c; Weir, 1986c). A second d i s t i n c t i o n i s between v o l u n t a r y or i n v o l u n t a r y euthanasia ( C u r t i n , 1982c; Walters, 1982c; Weir, 1986c). Walters d e s c r i b e s the l a t t e r d i s t i n c t i o n as f o l l o w s : Voluntary d e c i s i o n s about death are those i n which a competent p a t i e n t requests or g i v e s informed consent to a p a r t i c u l a r course of treatment or nontreatment. The term ' i n v o l u n t a r y ' , however, i s not g e n e r a l l y a p p l i e d to s i t u a t i o n s i n which the expressed w i l l of a competent p a t i e n t i s o v e r r i d d e n but r a t h e r to cases in which the p a t i e n t - because of age, mental impairment, or unconsciousness - i s not competent to give informed consent to l i f e - d e a t h d e c i s i o n s (p. 308). Informed consent i m p l i e s four p r e r e q u i s i t e s . These have been d e s c r i b e d by Beauchamp (1982b) as i n c l u d i n g (a) d i s c l o s u r e ; (b) v o l u n t a r i n e s s ; (c) c o g n i t i v e i n f o r m a t i o n - p r o c e s s i n g ; (d) competence (p. 171). 24 In terms of p r o l o n g a t i o n of the process of dying, competence i s o f t e n a p r e r e q u i s i t e that i s unable to be f u l f i l l e d by p a t i e n t s who are c r i t i c a l l y i l l (Weir, 1986b). Determining competence i s a l s o p r o b l e m a t i c a l , f o r "many ICU p a t i e n t s are c a t e g o r i z e d i n gray areas i n which competence (or autonomy) i s compromised r a t h e r than e n t i r e l y absent" (Youngner, 1986, p. 43). I t i s t h e r e f o r e o f t e n d i f f i c u l t to determine whether the c r i t i c a l l y i l l p a t i e n t i s competent to p a r t i c i p a t e i n v o l u n t a r y d e c i s i o n s about death. Given a d e t e r m i n a t i o n of l a c k of p a t i e n t competence, the p a t i e n t has a r i g h t to proxy decision-making ( P h i l p o t t , 1985; P i c a r d , 1984). Proxy decision-making i s f r e q u e n t l y necessary i n c r i t i c a l care f o r the p a t i e n t to i n i t i a t e the process of euth a n a s i a . Proxy decision-making f o r euthanasia was f i r s t e s t a b l i s h e d i n the Karen Ann Quinlan case, where the parents of a comatose p a t i e n t s u c c e s s f u l l y a p p l i e d to have l i f e - s u p p o r t measures withdrawn (re Quinlan, 1976). C u r t i n (1982c) o f f e r s the f o l l o w i n g commentary on the d i r e c t i o n provided by the Quinlan case: Given the f a c t that many people are i n v o l v e d i n such d e c i s i o n s i n the modern h o s p i t a l and that each of these people must bear moral and l e g a l r e s p o n s i b i l i t y f o r h i s / h e r a c t i o n s , i t i s not 25 p e r m i s s i b l e f o r one person to make a u n i l a t e r a l d e c i s i o n f o r the death of another person. T h i s p o s i t i o n was given r e c o g n i t i o n and support by the New J e r s e y Supreme Court's d e c i s i o n r e g a r d i n g Karen Ann Quinlan (p. 231). C u r t i n summarizes the c o n d i t i o n s f o r a p p r o p r i a t e proxy decision-making f o r euthanasia by s t a t i n g t h at "(1) The d e c i s i o n must be informed, (2) The d e c i s i o n must be demonstrated to be i n the best i n t e r e s t s of the p a t i e n t , (3) The d e c i s i o n must not be u n i l a t e r a l , that i s , i t must be a shared d e c i s i o n " (p. 232). A Canadian l e g a l s c h o l a r , Dickens (1980) has d e s c r i b e d s i m i l a r c o n d i t i o n s f o r proxy decision-making i n Canada. P h i l p o t t (1985), however, warns that c u r r e n t l e g i s l a t i o n and i n c o n s i s t e n t p o l i c i e s and p r a c t i c e s i n Canada render the incompetent person " v u l n e r a b l e " (p. 65). Proxy decision-making has thus been i d e n t i f i e d as necessary f o r euthanasia to take p l a c e f o r many c r i t i c a l l y i l l p a t i e n t s . Despite the d i r e c t i o n provided by the Quinlan case, that process has not been we l l e s t a b l i s h e d i n Canadian medical and l e g a l p r a c t i c e . Furthermore, the de t e r m i n a t i o n of competence or incompetence of c r i t i c a l l y i l l p a t i e n t s i s u n c e r t a i n . Hence, there i s an u n c e r t a i n mechanism f o r 26 incompetent p a t i e n t s i n c r i t i c a l care to e x e r c i s e t h e i r autonomous r i g h t to accept or r e f u s e treatment. Furthermore, at l e a s t one p h i l o s o p h e r has argued that the a c t i v e / p a s s i v e d i s t i n c t i o n f o r euthanasia i s i r r e l e v a n t (Rachels, 1975/1982). Weir (1982c) f i n d s that the " d i s t i n c t i o n between p a s s i v e and a c t i v e euthanasia i s not p a r t i c u l a r l y h e l p f u l " (p. 244). Instead, Weir p o s i t s p a s s i v e euthanasia as treatment abatement, and euthanasia as "cases i n v o l v i n g i n t e n t i o n a l k i l l i n g " (p. 244). The debate over the a c t i v e / p a s s i v e d i s t i n c t i o n i s not l i k e l y to achieve quick r e s o l u t i o n . Given a c u r r e n t l a c k of concensus, t h i s i n v e s t i g a t o r w i l l accept Weir's n o t i o n of treatment abatement as p a s s i v e euthanasia, and euthanasia as i n t e n t i o n a l k i l l i n g . Despite a m b i g u i t i e s i n the use of the term euthanasia, there i s general agreement i n the p h i l o s o p h i c a l l i t e r a t u r e that the i n d i v i d u a l has an autonomous r i g h t to death with d i g n i t y (Abrams, 1978; Engelhardt, 1975/1982b; F l e t c h e r , 1974; Kohl, 1978; Rachels, 1975/1982; Veatch, 1977/1982; W i l l i a m s , G., 1958/1982; W i l l i a m s , P., 1977/1978). That agreement i s , however, tempered with concerns that euthanasia may become a ' s l i p p e r y s l o p e ' f o r m o r a l l y r e p r e h e n s i b l e a c t s , such as p r e s s u r i n g the s i c k and e l d e r l y to end 27 t h e i r burden on s o c i e t y (Beauchamp, 1978/1982c; Beauchamp & C h i l d r e s s , 1979/1986; C h i l d r e s s , 1978; Kamisar, 1958/1982; Singer, 1979/1986). Treatment Abatement. As was d i s c u s s e d e a r l i e r , treatment abatement can be c o n s i d e r e d to be synonymous with p a s s i v e e u t h a n a s i a . Treatment abatement f o r c r i t i c a l l y i l l p a t i e n t s hinges on what i s c o n s i d e r e d to be the d i s t i n c t i o n between o r d i n a r y or e x t r a o r d i n a r y treatment. Also i n f l u e n c e d by the Quinlan case, the o r d i n a r y / e x t r a o r d i n a r y treatment d i s t i n c t i o n : i s that p a t i e n t s have a l e g a l r i g h t to expect o r d i n a r y c a r e , and arguably may have a duty to accept i t , but that a d m i n i s t r a t i o n of e x t r a o r d i n a r y care i s l e g a l l y d i s c r e t i o n a r y on the p a r t of p a t i e n t s , l e g a l guardians of incompetent p a t i e n t s , and p h y s i c i a n s . F u r t h e r , s i n c e there i s no l e g a l duty to i n i t i a t e e x t r a o r d i n a r y c a r e , there i s no duty to maintain i t i f such care i s undertaken (Dickens, 1984, pp. 198-199). The Law Reform Commission of Canada (1982) has e m p h a t i c a l l y s t a t e d that the p h y s i c i a n i s under no o b l i g a t i o n to d e l i v e r e x t r a o r d i n a r y treatment, and that the incompetent p a t i e n t ' s r i g h t not to undergo e x t r a o r d i n a r y treatment must be p r o t e c t e d . However, "the words 'ordin a r y ' and ' e x t r a o r d i n a r y ' 28 are fraught with vagueness and ambiguity" (Bandman & Bandman, 1985, p. 248). C a s s e l l (1986) warns that c r i t i c a l care u n i t s have become a s e l f - p e r p e t u a t i n g technology f o r r e s u s c i t a t i o n and maintenance of cardiopulmonary and r e n a l f u n c t i o n . Hence, what i s considered o r d i n a r y i n the context of a c r i t i c a l care u n i t may be very d i f f e r e n t from what i s c o n s i d e r e d o r d i n a r y on a general medical ward. The o r d i n a r y / e x t r a o r d i n a r y d i s t i n c t i o n i s thus dependent on c u r r e n t medical p r a c t i c e s , and may be i n c o n s i s t e n t even w i t h i n the same i n s t i t u t i o n . Confounding t h i s i n c o n s i s t e n c y i s the r e l a t i v e l a c k of Canadian case law i n the area (Law Reform Commission of Canada, 1982). One case that comes c l o s e to i l l u s t r a t i n g the i s s u e of treatment abatement i n Canada i s that of Stephen Dawson (re Dawson, 1983). In t h i s case, Mr. J u s t i c e L. McKenzie overturned a p r e v i o u s d e c i s i o n by a p r o v i n c i a l c o u r t judge, r u l i n g t h a t the parents of a s e v e r e l y handicapped c h i l d with hydrocephalus c o u l d not r e f u s e surgery f o r a shunt r e v i s i o n . Despite the agreement of the f a m i l y p h y s i c i a n , the neurosurgeon, an independent f a m i l y p h y s i c i a n , and the parents, Mr. J u s t i c e L. McKenzie made the d e c i s i o n that the c o u r t should determine what was best f o r the c h i l d (Kluge, 1983). T h i s Supreme 29 Court r u l i n g , although based on d i f f e r e n t f a c t u a l evidence than that of the P r o v i n c i a l Court, has been c r i t i c i z e d because i t ignores the s i t u a t i o n a l context of determining o r d i n a r y from e x t r a o r d i n a r y measures, and because i t v i o l a t e s the incompetent person's r i g h t f o r proxy decision-making (Dickens, 1984; Kluge, 1983). U n t i l subsequent cases a r i s e , i t would appear that we are l e f t with even l e s s d i r e c t i o n to determine . what o r d i n a r y treatment i s and to r e s p e c t the autonomy of incompetent p a t i e n t s to make c h o i c e s i n t h e i r treatment. The one f a c e t of treatment abatement that has r e c e i v e d some c l a r i f i c a t i o n i n the e t h i c a l and l e g a l arenas has been r e s u s c i t a t i o n . There i s general agreement i n the l i t e r a t u r e that withdrawal of r e s u s c i t a t i o n can be an e t h i c a l l y and l e g a l l y s anctioned d e c i s i o n (Alspach, 1985; C a s s e l l , 1986; Gordon & Hurowitz, 1984; Kellmer, 1986; Miya, 1984; Rozovsky & Rozovsky, 1985; Y a r l i n g & McElmurray, 1983). Within Canada, the Canadian H o s p i t a l A s s o c i a t i o n [C.H.A.], the Canadian Medical A s s o c i a t i o n [CM.A.], and the Canadian Nurses' A s s o c i a t i o n [C.N.A.], have provided g u i d e l i n e s f o r such a d e c i s i o n in the form of a J o i n t Statement on Terminal I l l n e s s (1984). As a r e s u l t of t h i s c l a r i f i c a t i o n , i t i s 30 becoming more e s t a b l i s h e d that p h y s i c i a n s may w r i t e 'no code' orders f o r p a t i e n t s e x p e r i e n c i n g p r o l o n g a t i o n of the process of d y i n g . However, other treatment measures such as v e n t i l a t i o n and hemodynamic monitoring may w e l l c o n t i n u e . Given p a t i e n t s who do not meet the biomedical c r i t e r i a of dead or dying, u n c e r t a i n mechanisms f o r incompetent p a t i e n t s to r e f u s e treatment, and vague and i n c o n s i s t e n t n o t i o n s of what c o n s t i t u t e s o r d i n a r y or e x t r a o r d i n a r y treatment, t h i s i s not s u r p r i s i n g . I t should a l s o be noted that even given the c l a r i f i c a t i o n i n the n u r s i n g , medical, e t h i c a l , and l e g a l l i t e r a t u r e , the implementation of withdrawal of r e s u s c i t a t i o n i t s e l f i s not without problems. The J o i n t Statement on Terminal I l l n e s s (C.H.A., CM.A., C.N.A., 1984) makes i t c l e a r that a 'do not r e s u s c i t a t e ' order must i n v o l v e informed consent of the p a t i e n t or proxy. T h i s i s f r e q u e n t l y not the case (Alspach, 1985; C a s s e l l , 1986; Evans & Brody, 1985; Y a r l i n g & McElmurry, 1983). Furthermore, i n s t i t u t i o n a l p o l i c i e s and procedures f o r 'do not r e s u s c i t a t e ' o r d e r s are o f t e n incomplete (Alspach; Evans & Brody; Y a r l i n g & McElmurry). Death With D i g n i t y . Before c l o s i n g t h i s review of e t h i c a l i s s u e s r e l a t e d to p r o l o n g a t i o n of the process 31 of dying, i t w i l l be important to focus on the n o t i o n of death with d i g n i t y . Death with d i g n i t y i s inherent in the previous d i s c u s s i o n s of euthanasia and treatment abatement, and i m p l i e s m a i n t a i n i n g r e s p e c t f o r dying i n d i v i d u a l s ' personhood. Personhood has been d e s c r i b e d as i n c o r p o r a t i n g the n o t i o n of i n d i v i d u a l s as s e l f - c o n s c i o u s , r a t i o n a l moral agents (Engelhardt, 1982a). Within n u r s i n g , the i m p l i c a t i o n s of r e s p e c t f o r personhood have been a r t i c u l a t e d i n terms of f o s t e r i n g s e l f - d e t e r m i n a t i o n (Gadow, 1980/1983). T h i s mandates r e s p e c t f o r "the i n d i v i d u a l ' s own d e c i s i o n about the meaning which an experience c o n t a i n s , before d e c i s i o n s are reached about responding p r a c t i c a l l y to the experience" (Gadow, p. 55). Death with d i g n i t y , t h e r e f o r e , i m p l i e s that i n d i v i d u a l s have the r i g h t to make sense of and c h o i c e s in t h e i r own dying process. Even l a c k i n g the competence necessary f o r the above, death with d i g n i t y i m p l i e s that the people have the r i g h t to be valued and respected and to make ch o i c e s by proxy (Englehardt, 1982a). A c o r o l l a r y of death with d i g n i t y i s that the person e x p e r i e n c i n g the dying process should be a f f o r d e d some q u a l i t y of l i f e while dying ( F l e t c h e r , 1974). T h i s i s i n d i c a t e d i n the use of the term 32 euthanasia, which "comes from the Greek, meaning good or pleasant death" (Davis & Aroskar, 1983, p. 140). A major focus i n d i s c u s s i o n s of q u a l i t y of l i f e i n dying t h e r e f o r e c e n t e r s around r e l i e f of s u f f e r i n g (Dyck, 1975/1986). S u f f e r i n g can be d e f i n e d not o n l y as p a i n , but "as the s t a t e of severe d i s t r e s s a s s o c i a t e d with events that t h r e a t e n the i n t a c t n e s s or wholeness of the person" ( C a s s e l l , 1983, p. 522). Summary of Related E t h i c a l Issues. The l i t e r a t u r e review on Related E t h i c a l Issues has attempted to present the e t h i c a l i s s u e s w i t h i n which p r o l o n g a t i o n of dying i s embedded so that e t h i c a l l y r e l e v a n t threads of complex s i t u a t i o n s can be drawn out. A summary of these e t h i c a l l y r e l e v a n t threads reads as f o l l o w s : 1. The c u r r e n t adoption of p u r e l y b i o m e d i c a l c r i t e r i a to determine death leaves us with an incomplete understanding of what i t means to c a l l a person dead or d y i n g . 2. Euthanasia can be c o n s i d e r e d on a continuum ranging from treatment abatement to i n t e n t i o n a l k i l l i n g . Within the context of euthanasia, there i s general agreement that the i n d i v i d u a l has a r i g h t to death with d i g n i t y , but t h i s agreement i s tempered with concerns about p o t e n t i a l abuse. 3. There e x i s t s an u n c e r t a i n mechanism f o r 33 incompetent p a t i e n t s i n c r i t i c a l care to e x e r c i s e t h e i r autonomous r i g h t to r e f u s e treatment. 4. Although there i s no l e g a l o b l i g a t i o n f o r p h y s i c i a n s to pursue e x t r a o r d i n a r y treatment f o r competent or incompetent p a t i e n t s , the d e f i n i t i o n of e x t r a o r d i n a r y i s vague and i n c o n s i s t e n t . 5. There i s general agreement that withdrawal of r e s u s c i t a t i o n can be an e t h i c a l l y and l e g a l l y sanctioned d e c i s i o n i n p r o l o n g a t i o n of dying, but the implementation of withdrawal of r e s u s c i t a t i o n may be i n c o n s i s t e n t . 6. Death with d i g n i t y i s a n o t i o n i m p l i c i t i n euthanasia and treatment abatement, and i m p l i e s that i n d i v i d u a l s have the r i g h t to make sense of and c h o i c e s i n t h e i r own dying p r o c e s s . 7. R e l i e f of s u f f e r i n g i s a major focus i n the n o t i o n of death with d i g n i t y . R e l a t e d E t h i c a l Research As was s t a t e d i n Chapter One, there i s l i t t l e w r i t t e n that a c t u a l l y e x p l o r e s e t h i c a l s i t u a t i o n s faced by nurses with t h e i r dying p a t i e n t s (Crisham, 1981; Davis, A., 1981; Davis & Aroskar, 1983; Ornery, 1983b). T h i s s e c t i o n of the l i t e r a t u r e review w i l l e x p l o r e the r e s e a r c h on e t h i c a l i s s u e s w i t h i n n u r s i n g that does e x i s t , and w i l l examine the i m p l i c a t i o n s f o r our 34 understanding of nurses' e t h i c a l p e r s p e c t i v e s on p r o l o n g a t i o n of the process of dy i n g . The focus i n t h i s s e c t i o n w i l l be on d e s c r i p t i o n s of nurses' experiences i n e t h i c a l i s s u e s , while the next s e c t i o n of Chapter Two w i l l focus on nurses' moral reasoning i n e t h i c a l s i t u a t i o n s . Related E t h i c a l Research w i l l be approached f i r s t by examining e a r l y s t u d i e s of the e t h i c s of n u r s i n g p r a c t i c e ; secondly, by examining s t u d i e s of the e t h i c s of r e s u s c i t a t i o n ; and f i n a l l y , by examining r e c e n t s t u d i e s of nurses' e t h i c a l p e r s p e c t i v e s . E a r l y S t u d i e s . Concern about the e t h i c s of nu r s i n g p r a c t i c e i s a r e l a t i v e l y recent phenomenon. One of the f i r s t s t u d i e s to appear i n the l i t e r a t u r e was p u b l i s h e d by Nursing '74 (1974a & b ) . In t h i s study, 11,000 readers of the j o u r n a l from the U.S. and Canada responded to a 73-item closed-response q u e s t i o n n a i r e , many nurses supplementing the q u e s t i o n n a i r e with w r i t t e n anecdotes (Nursing '74, 1974a, p. 35). The anecdotes were d e s c r i b e d as being "read by [the] e d i t o r s with a growing sense of f a s c i n a t i o n " (Nursing  '74, 1974a, p. 35). The survey covered many of the e t h i c a l f a c e t s of nursing p r a c t i c e . In g e n e r a l , the r e s u l t s of the survey p o r t r a y e d "a p o s i t i v e image of today's nurse as 35 a c o n f i d e n t p r o f e s s i o n a l s t i l l plagued by d o c t o r s ' e x p e c t a t i o n s of subservience . . . f r u s t r a t e d by i n a b i l i t y to interve n e i n the p a t i e n t s ' b e h a l f . . . and concerned about d i f f i c u l t y i n maint a i n i n g nonjudgemental a t t i t u d e [ s i c ] toward c e r t a i n p a t i e n t s " (Nursing '74, 1974a, p. 44). More s p e c i f i c a l l y i n terms of t h i s t h e s i s , nurses expressed d i f f i c u l t y i n d i s c u s s i n g death with p a t i e n t s , or i n t e r v e n i n g when the p h y s i c i a n s had not informed p a t i e n t s of t h e i r c o n d i t i o n (Nursing '74, 1974b, p. 62). C i t i n g one anecdote, the e d i t o r s r e p o r t e d that "[one] nurse saw the e t h i c a l problem as a 'lack of concern f o r the q u a l i t y of l i f e e vident i n treatment of c h r o n i c or t e r m i n a l l y i l l persons'" (Nursing '74, 1974b, p. 62). Responding to a q u e s t i o n of whether or not a nurse should " c a l l a code f o r an unexpected c a r d i a c a r r e s t i n a t e r m i n a l l y i l l p a t i e n t when the doctor has l e f t no i n s t r u c t i o n s " , 54% of the respondents r e p l i e d no (Nursing '74, 1974b, p. 62). The e d i t o r s o f f e r e d an i n t e r p r e t a t i o n of the responses to t h i s q u e s t i o n by s t a t i n g t h a t " h a l f of the nurses would allow the p a t i e n t the d i g n i t y of a n a t u r a l death and perhaps death without p r o l o n g a t i o n of pain and s u f f e r i n g " (Nursing '74, 1974b, p. 62). A second anecdote was i l l u s t r a t e d from a nurse who worked i n 36 ICU, expressing concern about "prolonging l i f e by a r t i f i c i a l means" (Nursing '74, 1974b, p. 62). R e l i g i o u s background was not found to have made a d i f f e r e n c e i n t h i s area, with l e s s education c o r r e l a t i n g with more l i k e l i h o o d t h at the nurse would c a l l a code f o r a t e r m i n a l l y i l l p a t i e n t (Nursing '74, 1974b, pp. 62-63). Two other f i n d i n g s of the survey are noteworthy. One f i n d i n g t h at was expressed a few times was nurses' e x p r e s s i o n s that they f e l t the survey was necessary and that they had never had the o p p o r t u n i t y to respond to or make d i s c l o s u r e s on e t h i c a l i s s u e s (Nursing '74, 1974a). Secondly, i n the area of c h a l l e n g i n g a p h y s i c i a n ' s i n c o r r e c t order, the e d i t o r s p o s t u l a t e d that t h e i r f i n d i n g s r e f l e c t e d a " d i f f e r e n c e between what nurses say they would do and what they a c t u a l l y do i n p r a c t i c e " (Nursing '74, 1974a, p. 39). The same year that Nursing '74 (1974a & b) undertook i t s survey, the Canadian Nurses' A s s o c i a t i o n [C.N.A.] S p e c i a l Committee on Nursing Research "became i n c r e a s i n g l y aware of the changing nature of n u r s i n g p r a c t i c e and of the p o t e n t i a l e t h i c a l and moral problems c o n f r o n t i n g p r a c t i t i o n e r s " ( A l l e n , 1974, p. 22). Sending out s e v e r a l requests i n the Canadian  Nurse f o r nurses "who had faced a p a r t i c u l a r e t h i c a l 37 problem to d e s c r i b e the s i t u a t i o n i n d e t a i l " , o n l y 22 responses were r e c e i v e d ( A l l e n , p. 22). A l l e n ' s a n a l y s i s of the examples r e c e i v e d was as f o l l o w s : . . . i t would appear, i n many i n s t a n c e s , that the problem of responding to the i n d i v i d u a l p a t i e n t and of meeting h i s needs was p e r c e i v e d to be i n c o n f l i c t with d i r e c t i v e s a r i s i n g from other sources - medicine, h o s p i t a l p o l i c y , the law, or r e l i g i o n . Other e t h i c a l c o n s i d e r a t i o n s d e a l t with how to cope or how to respond i n h i g h l y complex, multi-problem s i t u a t i o n s ( A l l e n , p. 23). A l l e n (1974) s p e c i f i c a l l y noted that no problem was c i t e d that d e a l t with "the problem of l i f e and death, such as mai n t a i n i n g l i f e f o r long p e r i o d s i n non-responding i n d i v i d u a l s " or "euthanasia" (p. 23). A l l e n concluded that " i t would appear that nurses seldom experience e t h i c a l problems", and that t h e i r problems l a y i n determining to whom the nurse was r e s p o n s i b l e , and "to get other people to behave i n [the nurse's] e t h i c a l f a s h i o n " (p. 23). It i s d i f f i c u l t to take a great d e a l of d i r e c t i o n from A l l e n ' s (1974) r e p o r t . F i r s t , she d i d not comment on why the response r a t e might have been so s m a l l . Secondly, her use of the term ' e t h i c a l problem' i s co n f u s i n g . Nurses experienced s i t u a t i o n s i n which 38 t h e i r care of p a t i e n t s was i n c o n f l i c t with d i r e c t i v e s a r i s i n g from other sources, yet A l l e n d i d not d e f i n e t h i s as an e t h i c a l problem. Perhaps what i s most noteworthy i n A l l e n ' s r e p o r t i s that the C.N.A. Committee on Nursing Research was concerned about p o t e n t i a l e t h i c a l and moral problems c o n f r o n t i n g n u r s i n g p r a c t i t i o n e r s . Another e a r l y study r e l a t i n g to the e t h i c s of n u r s i n g p r a c t i c e was p u b l i s h e d from the department of psychology at Teacher's C o l l e g e , Columbia U n i v e r s i t y i n 1975 (Davitz & D a v i t z , 1975). D a v i t z & D a v i t z employed small group i n t e r v i e w s with over 200 nurses to address the f o l l o w i n g : While much a t t e n t i o n has focused on p a t i e n t s ' r e a c t i o n s to pain and i l l n e s s , what about the nurse? What happens to nurses' judgements, emotional r e a c t i o n s , and p e r s o n a l a t t i t u d e s i n a p r o f e s s i o n that demands d a i l y encounter with pain and d i s t r e s s ? How do nurses f e e l about t h e i r e xperiences? (p. 1505). Although Dav i t z and D a v i t z approached the q u e s t i o n from a p s y c h o l o g i c a l s t a n d p o i n t , the emphasis on nurses' judgements and. a t t i t u d e s and p a t i e n t s u f f e r i n g f i t s w i t h i n the scope of e t h i c a l c o n s i d e r a t i o n s . D a v i t z and D a v i t z ' s (1975) f i n d i n g s emphasized "the 39 nurse's sense of being overwhelmed by the very r e a l s u f f e r i n g of p a t i e n t s she works with every day" (p. 1508). Nurses d e s c r i b e d p a r t i c u l a r d i f f i c u l t y responding to the p s y c h o l o g i c a l aspects of s u f f e r i n g . D a v i t z and D a v i t z f u r t h e r i d e n t i f i e d nurses' e a r l y a t t i t u d e s of i d e a l i s m being ' j o l t e d ' by the r e a l i t i e s of p r a c t i c e , and t h e i r experiences of overinvolvement with p a t i e n t s l e a d i n g to the development of a degree of emotional d i s t a n c e . The f i n d i n g s of the study emphasized nurses' responses i n terms of processes e v o l v i n g over time. Of p a r t i c u l a r importance i s D a v i t z and D a v i t z ' s (1975) c o n c l u s i o n that " r e a c t i o n s to the death and dying of p a t i e n t s c l e a r l y e l i c i t e d the s t r o n g e s t emotional responses" (p. 1510). Although p r o l o n g a t i o n of the process of dying per se was not i d e n t i f i e d as an area of concern, D a v i t z and D a v i t z ' s c o n c l u s i o n i s noteworthy. "Perhaps the o n l y c o n c l u s i o n that needs to be drawn i s a r e a f f i r m a t i o n of the n e c e s s i t y to continue, and even expand, our concern f o r those who face the f a c t of m o r t a l i t y i n t h e i r everyday p r o f e s s i o n a l l i v e s " (p. 1510). In review of the e a r l y s t u d i e s of the e t h i c s of nursing p r a c t i c e , then, we f i n d a l a r g e survey i n d i c a t i n g that nurses f e e l f r u s t r a t e d by t h e i r 40 i n a b i l i t y to i n t e r v e n e i n the p a t i e n t ' s b e h a l f , and f e e l concerned about p r o l o n g i n g l i f e with a r t i f i c i a l means. A second survey i d e n t i f i e s nurses as e x p e r i e n c i n g s i t u a t i o n s i n which t h e i r care of p a t i e n t s i s i n c o n f l i c t with other sources. A t h i r d study emphasizes the emotional c o s t s experienced by nurses working with p a t i e n t s who are s u f f e r i n g , p a r t i c u l a r l y those p a t i e n t s who are d y i n g . I n t e r e s t i n g l y , the emphasis from these s t u d i e s on s i t u a t i o n a l c o n s t r a i n t s p e r c e i v e d by nurses i s s i m i l a r to that found i n the e a r l y c r i t i c a l care n u r s i n g s t r e s s l i t e r a t u r e (Cassem & Hackett, 1975; Gentry, F o s t e r & F r o e h l i n g , 1972/1982; Hay & Oken, 1972/1982; Menzies, 1960/1982; Vreeland & E l l i s , 1969/1982). Furthermore, D a v i t z and D a v i t z ' s (1975) d e s c r i p t i o n of nurses' i d e a l i s m being j o l t e d by the r e a l i t i e s of p r a c t i c e i s s i m i l a r to Kramer's (1974) no t i o n of r e a l i t y shock, and S t o r l i e ' s (1979/1982) n o t i o n of burnout. I t would appear that what we begin to see i n the e t h i c a l and s t r e s s l i t e r a t u r e are fundamentally the same concerns being approached from d i f f e r e n t t h e o r e t i c a l p e r s p e c t i v e s . In r e l a t i o n to the s i m i l a r i t y of concerns a r i s i n g in the e t h i c a l and s t r e s s l i t e r a t u r e over time, i t i s apparent that s i t u a t i o n a l c o n s t r a i n t s of high workloads, i n t e r p e r s o n a l c o n f l i c t s , and l a c k of 41 p h y s i c i a n and a d m i n i s t r a t i v e support have been c o n s i s t e n t l y i d e n t i f i e d as sources of s t r e s s f o r c r i t i c a l care nurses ( B a i l e y , S t e f f e n & Grout, 1980; Cassem & Hackett, 1975; Gentry, F o s t e r & F r o e h l i n g , 1972/1982; Hay & Oken, 1972/1982; Jacobson, 1979/1982; Oskins, 1979/1982; Vreeland & E l l i s , 1969/1982). As a consequence of prolonged exposure to the negative c o n d i t i o n s i n t h e i r s i t u a t i o n and l a c k of exposure to the p o s i t i v e c o n d i t i o n s of p a t i e n t s g e t t i n g b e t t e r , c r i t i c a l care nurses are seen to s u f f e r burnout and leave (Alexander & Chase, 1982; Consolvo, 1979/1982; Dear, Weisman, Alexander & Chase, 1982; Holsclaw, 1965; M i l l a r , 1980; Pines & Kanner, 1982; Stone, Jebsen, Walk & Belsham, 1984; Vreeland & E l l i s , 1969/1982; White, 1980/1982). Burnout and a t t r i t i o n have thus come to be viewed as responses by nurses to the prolonged exposure to n e g a tive c o n d i t i o n s i n t h e i r s i t u a t i o n and l a c k of p o s i t i v e c o n d i t i o n s of p a t i e n t s g e t t i n g b e t t e r . I m p l i c i t l y , then, burnout and a t t r i t i o n have come to be viewed as nurses' responses to e t h i c a l problems such as p r o l o n g a t i o n of the process of d y i n g . What i s not c l e a r from the l i t e r a t u r e i s what other kinds of responses nurses may make to e t h i c a l problems such as p r o l o n g a t i o n of the process of d y i n g . Studies on R e s u s c i t a t i o n . S t u d i e s on the 42 r e s u s c i t a t i o n of c r i t i c a l l y i l l p a t i e n t s have become more frequent i n the recent l i t e r a t u r e , and i l l u s t r a t e e t h i c a l as w e l l as b i o m e d i c a l concerns. A nurse r e s e a r c h e r , Witte (1984), undertook a r e t r o s p e c t i v e chart review of p a t i e n t s who had been r e s u s c i t a t e d to determine "which of a set of s p e c i f i c demographic, p h y s i o l o g i c and p s y c h o s o c i a l v a r i a b l e s were present when i n t e n s i v e care p a t i e n t s were to be r e s u s c i t a t e d " (p. 159). Witte found that " d u r a t i o n of h o s p i t a l i z a t i o n , the l e v e l of consciousness, and the presence of documentation of wishes of f a m i l y or s i g n i f i c a n t o t h e r s " c o r r e l a t e d with 'do not r e s u s c i t a t e ' orders (p. 161). Witte expressed approval that c o n s i d e r a t i o n s such as q u a l i t y of l i f e and proxy decision-making were s i g n i f i c a n t i n d e c i s i o n s to withdraw r e s u s c i t a t i o n . Witte concluded her study by s t a t i n g that the " i s s u e of r e s u s c i t a t i o n i n v o l v e s every h e a l t h care p r o v i d e r concerned about e t h i c a l d e c i s i o n making i n the best i n t e r e s t s of c r i t i c a l l y i l l p a t i e n t s " (p. 163). Given the presence of " l i t t l e data . . . to help c l a r i f y the process", Witte c a l l e d f o r f u r t h e r r e s e a r c h (p. 163). The c a l l f o r b i o m e d i c a l data to c l a r i f y decision-making i n r e s u s c i t a t i o n has been echoed by C a s s e l l (1986). Berseth, Kenny, and Durand (1984), two p h y s i c i a n s 43 and an i n v e s t i g a t o r from a graduate school of p u b l i c a f f a i r s , set out to " d i s c e r n the a t t i t u d e s of n u r s i n g personnel i n i n t e n s i v e care and intermediate care n u r s e r i e s toward h i g h - r i s k i n f a n t s and t h e i r parents, and to examine c e r t a i n f a c t o r s that may i n f l u e n c e those a t t i t u d e s " (p. 508). A closed-response q u e s t i o n n a i r e was administered i n 1979 to nurses working i n the two d i f f e r e n t kinds of n u r s e r i e s i n two d i f f e r e n t agencies (Berseth et a l . , p. 508). The f i n d i n g s i n d i c a t e d that nurses working i n i n t e n s i v e care n u r s e r i e s and nurses who had longer work experience i n int e r m e d i a t e care n u r s e r i e s were l e s s l i k e l y to "favour r e s u s c i t a t i o n of c e r t a i n h i g h - r i s k i n f a n t s " (Berseth et a l . , p. 510). A l a r g e p r o p o r t i o n of both groups of nurses f e l t t h a t "a c h i l d whose death [was] imminent but who [did] not r e q u i r e e x t e n s i v e h o s p i t a l support should be cared f o r at home" (Berseth et a l . , p. 510). Berseth et a l . (1984) i n t e r p r e t e d i n t e n s i v e care nursery nurses' responses as i n d i c a t i n g that "ICU nurses r a r e l y have the p o s i t i v e reinforcement of observing the r e c u p e r a t i o n or d i s m i s s a l of the p a t i e n t s who s u r v i v e " (p. 510). No mention was made of nurses' n o t i o n s of q u a l i t y of l i f e or r e l i e f of s u f f e r i n g i n r e l a t i o n to t h e i r f i n d i n g s , even though "ICU nurses a l s o were more l i k e l y to agree with the concept of 44 a c t i v e euthanasia" (Berseth et a l . , p. 110). I t i s d i f f i c u l t to i n t e r p r e t Berseth et a l . ' s e x p l a n a t i o n of why nurses who had longer work experience i n the intermediate care nursery were l e s s l i k e l y to favour r e s u s c i t a t i o n . Berseth et a l . made the statement that "a nurse's s e l e c t i o n of an [in t e r m e d i a t e care n u r s e r y ] assignment could represent an attempt to avoid the p o t e n t i a l g r i e f and a n x i e t y of c a r i n g f o r dying p a t i e n t s i n the ICU" (p. 110). Furthermore, Berseth et a l . concluded that t h e i r f i n d i n g that both groups of nurses would p r e f e r to see a dying c h i l d cared f o r at home "may i n d i c a t e the s t r e s s t h at nurses f e e l i n c a r i n g f o r dying p a t i e n t s and t h e i r f a m i l i e s " and "may be at l e a s t p a r t i a l l y a r e f l e c t i o n of- g u i l t f e e l i n g s that l e s s - t h a n - p e r f e c t s e r v i c e has been p r o v i d e d " (p. 110). T h i s i n v e s t i g a t o r i s d i s t r e s s e d to f i n d non-nurses o b l i q u e l y i n t e r p r e t i n g nurses* a t t i t u d e s . Nurses' p e r c e p t i o n s of why they chose the responses they d i d were never e x p l o r e d , and i t i s d i f f i c u l t to f o l l o w the d i r e c t i o n Bersham et a l . (1984) took from the l i t e r a t u r e i n t h e i r i n t e r p r e t a t i o n s . A t h i r d study on the r e s u s c i t a t i o n of c r i t i c a l l y i l l p a t i e n t s was undertaken by Lewandowski, Daly, M c C l i s h , J u k n i a l i s , and Youngner (1985). Two of the 45 i n v e s t i g a t o r s were nurses. Given a "need to determine which treatments are a p p r o p r i a t e f o r a p a t i e n t who i s not to be r e s u s c i t a t e d " (p. 175), Lewandowski et a l . addressed the f o l l o w i n g q u e s t i o n s : (1) What l e v e l s of medical and n u r s i n g r e s o u r c e s do ['do not r e s u s c i t a t e ' ] p a t i e n t s consume i n the ICU? (2) What impact does the ['do not r e s u s c i t a t e ' ] order have on the withdrawal or i n i t i a t i o n of c e r t a i n l i f e - s u s t a i n i n g and n u r s i n g i n t e r v e n t i o n s ? (3) Do ['do not r e s u s c i t a t e ' ] p a t i e n t s s u r v i v e the ICU and h o s p i t a l ? (p. 175). Data f o r the study were obtained from a l a r g e p r o s p e c t i v e study, and were analyzed i n terms of demographic and c l i n i c a l c h a r a c t e r i s t i c s , resource consumption, and n u r s i n g care requirements (Lewandowski et a l . , 1985). The f i n d i n g s i n d i c a t e d the f o l l o w i n g : (a) I t was not uncommon f o r 'do not r e s u s c i t a t e ' p a t i e n t s to occupy beds i n a medical ICU. Two p a t i e n t s d u r i n g the course of the study were admitted with 'do not r e s u s c i t a t e ' o r d e r s . The i n v e s t i g a t o r s concluded that p a t i e n t s who were not candidates f o r r e s u s c i t a t i o n were considered candidates f o r i n t e n s i v e c a r e ; (b) The 'do not r e s u s c i t a t e ' order had a l i m i t e d i n f l u e n c e on the withdrawal of s p e c i f i c a g g r e s s i v e t h e r a p i e s such as 46 v e n t i l a t i o n and hemodynamic mon i t o r i n g . The i n v e s t i g a t o r s i n t e r p r e t e d t h i s f i n d i n g as i n d i c a t i v e of the e t h i c a l i s s u e s i n v o l v e d , and as i n d i c a t i v e of p h y s i c i a n s ' u n c e r t a i n t y about the l e g a l i m p l i c a t i o n s of euthanasia and treatment abatement; (c) 'Do not r e s u s c i t a t e ' p a t i e n t s continued to demand a high l e v e l of n u r s i n g c a r e . The i n v e s t i g a t o r s noted that n u r s i n g s t a f f may have underestimated the l e v e l s of p s y c h o s o c i a l support r e q u i r e d by these p a t i e n t s and t h e i r f a m i l i e s ; (d) Despite a g g r e s s i v e treatment, h o s p i t a l m o r t a l i t y r a t e s f o r 'do not r e s u s c i t a t e 1 p a t i e n t s were extremely high (Lewandowski et a l . , 1985, pp. 179-181). Lewandowski et a l . (1985) concluded by e x p r e s s i n g concern that a g g r e s s i v e medical treatment f o r 'do not r e s u s c i t a t e ' p a t i e n t s c o n f l i c t e d with the r e a l i t y of p a t i e n t s with a poor q u a l i t y of l i f e , wasted sc a r c e ICU r e s o u r c e s , and caused "undue p a t i e n t s u f f e r i n g " and " c r i p p l i n g f i n a n c i a l burdens" (p. 181). The i n v e s t i g a t o r s c a l l e d f o r f u r t h e r s t u d i e s to j u s t i f y r e s u s c i t a t i o n and subsequent care and treatment d e c i s i o n s as w e l l as to determine the q u a l i t y of l i f e of 'do not r e s u s c i t a t e ' p a t i e n t s who s u r v i v e h o s p i t a l i z a t i o n . The s t u d i e s reviewed on the r e s u s c i t a t i o n of 47 c r i t i c a l l y i l l p a t i e n t s i l l u s t r a t e that c o n s i d e r a t i o n s such as q u a l i t y of l i f e and proxy decision-making may be taken i n t o account, but that treatment abatement i n terms of r e s u s c i t a t i o n may take place without withdrawal of other t e c h n o l o g i c a l i n t e r v e n t i o n s . R e s u s c i t a t i o n d e c i s i o n s appear to be of concern to nurses, and the care of p a t i e n t s designated as *do not r e s u s c i t a t e ' absorbs s i g n i f i c a n t n u r s i n g r e s o u r c e s i n the ICU. F u r t h e r r e s e a r c h has been c a l l e d f o r to j u s t i f y r e s u s c i t a t i o n d e c i s i o n s as w e l l as subsequent care and treatment d e c i s i o n s i n terms of q u a l i t y of l i f e . Recent S t u d i e s . Recent s t u d i e s on n u r s i n g e t h i c s have s t a r t e d to focus more p u r p o s e f u l l y on nurses' e t h i c a l p e r c e p t i o n s . A. Davis (1981) expressed concern about the l a c k of q u a l i t a t i v e data on e t h i c a l i s s u e s faced by nurses. In p a r t i c u l a r , she expressed concern about the h i s t o r i c a l preponderance of closed-response quest i o n n a i r e s : Predetermined c a t e g o r i e s that l i m i t the nature of the q u e s t i o n as w e l l as the p o s s i b l e responses act to d e f i n e r e a l i t y a c c o r d i n g to the r e s e a r c h e r s ' p e r c e p t i o n not according to the experience of those being s t u d i e d . As u s e f u l as such data from a q u e s t i o n n a i r e may be, they r e f l e c t what the 48 r e s e a r c h e r s b e l i e v e to be the p r e s s i n g i s s u e s and may or may not f i t with the c o m p l e x i t i e s of the a c t u a l n u r s i n g experience (Davis, A., p. 398). In response to her own concerns, A. Davis (1981) administered a survey i n open-ended format to 205 nurses "so that the p a r t i c i p a n t s c o u l d i n d i c a t e those e t h i c a l dilemmas that were p a r t i c u l a r l y troublesome to them" (p. 398). More s p e c i f i c a l l y , the survey focused on "(1) the extent to which nurses understand the concept, e t h i c a l dilemma, (2) the content of the e t h i c a l dilemmas that c o n f r o n t nurses, and (3) the r e l a t i o n s h i p s among e t h i c a l dilemma v a r i a b l e s and s e l e c t e d employment and demographic v a r i a b l e s " (Davis, p. 397). I t should be noted that A. D a v i s 1 use of the term ' e t h i c a l dilemma' i s congruent with the term ' e t h i c a l problem 1 as used i n t h i s t h e s i s . A. Davis' (1981) f i n d i n g s were that the m a j o r i t y of respondents to her survey were "young s t a f f nurses who had a good grasp of the concept, e t h i c a l dilemma" (p. 404). Importantly, one of the most f r e q u e n t l y o c c u r r i n g dilemmas was "prolonging l i f e with h e r o i c measures" (Davis, A., p. 404). I t i s r e l e v a n t to note that the i d e n t i f i c a t i o n of p r o l o n g a t i o n of the process of dying as a s p e c i f i c concern of nurses has been p a r a l l e l e d i n some of the r e s e a r c h on c r i t i c a l care 49 n u r s i n g s t r e s s ( B a i l e y , S t e f f e n & G r o u t , 1 9 8 0 ; C a s s e m & H a c k e t t , 1 9 7 5 ; J a c o b s o n , 1 9 8 2 / 1 9 7 9 ; S t e f f e n , 1 9 8 0 ) . A. D a v i s ( 1 9 8 1 ) a l s o f o u n d t h a t y o u n g e r n u r s e s w e r e "more a p t t o e x p e r i e n c e d i f f i c u l t i e s a r o u n d e t h i c a l d i l e m m a s w i t h p a t i e n t s , f a m i l i e s , p h y s i c i a n s a n d i n s t i t u t i o n s t h a n w e r e o l d e r n u r s e s " ( p . 4 0 4 ) . T h e e m p h a s i s f r o m A. D a v i s ' s t u d y o n n u r s e s ' d i f f i c u l t i e s w i t h p h y s i c i a n s a n d i n s t i t u t i o n s s u p p o r t s t h e e m p h a s i s o n s i t u a t i o n a l c o n s t r a i n t s n o t e d e a r l i e r i n t h e s t r e s s l i t e r a t u r e . A. D a v i s a l s o p o s i t e d t h a t t h e d i f f i c u l t i e s e x p e r i e n c e d b y y o u n g e r n u r s e s r e f l e c t e d " t h e i d e a l i s m o f y o u t h " ( p . 4 0 4 ) . T h i s n o t i o n p a r a l l e l s K r a m e r ' s ( 1 9 7 4 ) d e s c r i p t i o n o f r e a l i t y s h o c k , w h e r e p o s t g r a d u a t e n u r s e s ' s o c i a l i z a t i o n r e s u l t s i n c o n f l i c t b e t w e e n e d u c a t i o n a l a n d w o r k p l a c e i d e o l o g i e s . P e r h a p s n u r s e s n e w e r t o t h e p r o f e s s i o n e x p e r i e n c e t h e c o n f l i c t i n a d i f f e r e n t m a n n e r t h a n n u r s e s w i t h m o r e l o n g e v i t y . T h e s t u d y r e v i e w e d e a r l i e r i n t h i s c h a p t e r b y D a v i t z a n d D a v i t z ( 1 9 7 5 ) e m p h a s i z e s n u r s e s ' r e s p o n s e s t o p a t i e n t s u f f e r i n g a s p r o c e s s e s e v o l v i n g o v e r t i m e . N u r s e s ' r e s p o n s e s a s e v o l v i n g o v e r t i m e i s e m p h a s i z e d a g a i n i n A. D a v i s ' s t u d y w h e n s h e n o t e d t h a t d i p l o m a n u r s e s " i n d i c a t e d t h a t t h e y d i s a g r e e d m o r e o f t e n w i t h p h y s i c i a n s " , p o s s i b l y b e c a u s e a s a g r o u p t h e d i p l o m a n u r s e s h a d w o r k e d l o n g e r ( p . 4 0 4 ) . 50 A f i n a l point in review of A. Davis 1 (1981) study was her statement that nurses were in need of dialogue on e t h i c a l issues, and wrote "numerous and often lengthy" comments on the back of the survey forms to that effect (p. 405). A. Davis concluded by stating that "such comments ranged from thanking the researcher for the opportunity to part i c i p a t e in a study on an important and increasingly troublesome topic to b i t t e r comments as to why individuals considered leaving nursing as the only e t h i c a l option open to them" (p. 405). The comments described by A. Davis are reminiscent of the comments purportedly read by the editors in the Nursing '74 (1974a) study with "a growing sense of fascination" (p. 35). In both studies, as well as in a study to be reviewed l a t e r by Crisham (1981), nurses emphatically indicated that they needed an opportunity to express themselves on e t h i c a l concerns. A second study i l l u s t r a t i n g facets of nurses' e t h i c a l perceptions was undertaken by a s o c i o l o g i s t in Great B r i t a i n ( F i e l d , 1984). F i e l d examined "nurses' accounts of th e i r experiences of nursing dying patients and their attitudes towards nursing the dying" (p. 59). Field's study i s p a r t i c u l a r l y relevant to the l i t e r a t u r e reviewed in t h i s thesis in terms of nurses' 51 p e r c e p t i o n s of s i t u a t i o n a l c o n s t r a i n t s because F i e l d emphasized "ways i n which the o r g a n i z a t i o n of [nurses'] work i n f l u e n c e s [ t h e i r ] experiences and a t t i t u d e s " (p. 59). T h i s emphasis i s congruent with other s o c i o l o g i c a l s t u d i e s examining the s o c i a l c o n t e x t s of h e a l t h care, or "the ways i n which the s o c i a l o r g a n i z a t i o n of h e a l t h - c a r e i n s t i t u t i o n s a f f e c t s h e a l t h - c a r e p r a c t i c e s and outcomes" ( M i s h l e r , 1981). Other s o c i o l o g i c a l s t u d i e s that e s t a b l i s h the importance of understanding the s o c i a l o r g a n i z a t i o n of the h o s p i t a l i n order to understand i n s t i t u t i o n a l p r a c t i c e s v i s - a - v i s dying p a t i e n t s i n c l u d e those by Glaser and Strauss (1965) and Sudnow (1967). F i e l d (1984) undertook i n f o r m a l audiotaped i n t e r v i e w s with the n u r s i n g s t a f f of a general medical ward. He found that nurses p r e f e r r e d open d i s c l o s u r e with p a t i e n t s who were dying, and that emotional involvement was " i n e v i t a b l e and unavoidable" ( F i e l d , p. 64). Nurses' p r e f e r e n c e s f o r open d i s c l o s u r e i s r e m i n i s c e n t of nurses' d i f f i c u l t y i n t e r v e n i n g when p h y s i c i a n s had not informed p a t i e n t s of t h e i r c o n d i t i o n r e p o r t e d i n the Nursing '74 (1974a & b) survey. F i e l d ' s f i n d i n g s i n terms of emotional involvement r e f l e c t those of D a v i t z and D a v i t z (1975). A study that focused s p e c i f i c a l l y upon c r i t i c a l 52 care nurses' e t h i c a l p e r c e p t i o n s was r e c e n t l y undertaken by a nurse r e s e a r c h e r , Fenton (1987). Fenton focused on the f o l l o w i n g r e s e a r c h q u e s t i o n s : 1. What are the e t h i c a l dilemmas that c r i t i c a l care n u r s i n g students and t h e i r i n s t r u c t o r s p e r c e i v e i n c l i n i c a l p r a c t i c e ? 2. What are the f e e l i n g s , a t t i t u d e s and b e l i e f s that c r i t i c a l care n u r s i n g students and t h e i r i n s t r u c t o r s have i n r e l a t i o n to these e t h i c a l dilemmas? 3. How do c r i t i c a l ' c a r e n u r s i n g students and t h e i r i n s t r u c t o r s come to terms with these e t h i c a l dilemmas? (pp. 6-7). I n t e r e s t i n g l y , Fenton's qu e s t i o n s r e f l e c t a concurrent focus on p e r c e p t i o n s and coping that i s becoming more apparent i n the s t r e s s l i t e r a t u r e (Monat & Lazarus, 1985). Fenton s e l e c t e d a phenomenological approach to address her r e s e a r c h q u e s t i o n s , and conducted i n t e r v i e w s with f i v e c r i t i c a l care n u r s i n g students and f i v e c r i t i c a l care n u r s i n g i n s t r u c t o r s . Fenton chose the two groups i n order to o b t a i n data from nurses inexperienced i n c r i t i c a l care as w e l l as nurses with e x t e n s i v e experience i n c r i t i c a l c a r e . Fenton (1987) summarized her f i n d i n g s i n terms of "the s i t u a t i o n a l context of an e t h i c a l dilemma, f a c t o r s 53 i n f l u e n c i n g i n d i v i d u a l response to the s i t u a t i o n and f i n a l l y the manner of response and coping with an e t h i c a l dilemma" (p. 198). Within the s i t u a t i o n a l context of an e t h i c a l dilemma, a major theme was excessive therapy, four elements of which were " l o s s of pa t i e n t d i g n i t y , p a t i e n t comfort, v i o l a t i o n of p a t i e n t ' s r i g h t s or wishes and family s u f f e r i n g " (p. 199). Fenton's i d e n t i f i c a t i o n of the major theme of excessive therapy thus makes more e x p l i c i t nurses' e t h i c a l perceptions i n terms of prolongation of the process of dying. Two other themes included the i n t e r p e r s o n a l dimension and d i s c o n t i n u a t i o n of therapy (Fenton, 1987). The i n t e r p e r s o n a l dimension included nurses' concerns about poorly informed p a t i e n t s and c o n f l i c t i n g p r o f e s s i o n a l l o y a l t i e s . In terms of d i s c o n t i n u a t i o n of therapy, some nurses f e l t concerned about t h e i r r o l e as car e g i v e r s and about the manner i n which d e c i s i o n s were made i n r e l a t i o n to d i s c o n t i n u a t i o n of therapy. These concerns support the premise of t h i s t h e s i s that we cannot assume what i n d i v i d u a l nurse's e t h i c a l p erspectives w i l l be i n r e l a t i o n to prolo n g a t i o n of the process of dying. In other words, some nurses may view d i s c o n t i n u a t i o n of therapy as a more s i g n i f i c a n t problem than excessive therapy. Fenton's t h e s i s 54 p r o v i d e s f u r t h e r s u p p o r t f o r the importance o f d i s c l o s u r e t o p a t i e n t s and f a m i l i e s and s i t u a t i o n a l c o n s t r a i n t s i n n u r s e s ' p e r c e p t i o n s o f e t h i c a l problems. Fenton (1987) c o n c l u d e s her s t u d y w i t h the c o n c e r n t h a t "the e x p e r i e n c e of the s e k i n d s o f p a t i e n t c a r e s i t u a t i o n s may be the sou r c e o f s i g n i f i c a n t p e r s o n a l d i s t r e s s f o r the nurse who becomes i n v o l v e d w i t h the p a t i e n t and f a m i l y i n c r i s i s " (p. 220). Fenton's s t u d y thus s u p p o r t s F i e l d (1984) and D a v i t z and D a v i t z (1975) i n terms o f i l l u s t r a t i n g the e m o t i o n a l i n v o l v e m e n t o f n u r s e s ' e x p e r i e n c e s w i t h d y i n g p a t i e n t s . To summarize the r e c e n t r e s e a r c h on n u r s e s ' e t h i c a l p e r c e p t i o n s , we f i n d p r o l o n g a t i o n o f the p r o c e s s o f d y i n g emerging as a c e n t r a l e t h i c a l problem. P r o l o n g a t i o n o f the p r o c e s s o f d y i n g has become i n c r e a s i n g l y c l a r i f i e d i n terms o f n u r s e s ' c o n c e r n s about l a c k o f d i s c l o s u r e w i t h p a t i e n t s and f a m i l i e s , l o s s o f p a t i e n t d i g n i t y , l o s s o f p a t i e n t c o m f o r t , v i o l a t i o n of p a t i e n t ' s r i g h t s o r wishes and f a m i l y s u f f e r i n g . N u r s e s ' p e r c e p t i o n s o f p r o l o n g a t i o n o f the p r o c e s s of d y i n g are embedded i n the c o n t e x t o f s i t u a t i o n a l c o n s t r a i n t s such as c o n f l i c t s w i t h p h y s i c i a n s and l a c k o f a d m i n i s t r a t i v e s u p p o r t . Nurses' r e s p o n s e s appear t o e v o l v e over t i m e , and i n c u r s i g n i f i c a n t e m o t i o n a l i n v o l v e m e n t . 55 Nurses' responses to t h e i r p e r c e p t i o n s n e c e s s i t a t e some decision-making i n e t h i c a l s i t u a t i o n s . T h e r e f o r e , the next s e c t i o n of Chapter Two w i l l p r ovide the b a s i s to explore nurses' responses i n terms of t h e i r decision-making i n e t h i c a l s i t u a t i o n s . Moral Reasoning Introduction To c i t e F l e t c h e r (1974), the " c r u c i a l b u s i n e s s of e t h i c s i s d e c i s i o n making, not the adumbration of a b s t r a c t p r i n c i p l e s " (p. 14). I m p l i c i t i n the d e f i n i t i o n of an e t h i c a l problem i s the n e c e s s i t y to make a d e c i s i o n ( C u r t i n , 1981a). The review of the l i t e r a t u r e to t h i s p o i n t has i l l u s t r a t e d nurses' p e r c e p t i o n s of p r o l o n g a t i o n of the process of dying as an e t h i c a l problem. What we have not examined i s how nurses are b e l i e v e d to make d e c i s i o n s i n the context of the e t h i c a l problem of p r o l o n g a t i o n of the process of dyi n g . Making d e c i s i o n s i n the context of an e t h i c a l problem i n v o l v e s a process known as moral r e a s o n i n g . That process i s based on the i n d i v i d u a l ' s moral development. T h i s s e c t i o n of Chapter Two w i l l commence by examining some t h e o r i e s of moral development, and w i l l then examine the a p p l i c a t i o n of these t h e o r i e s i n nursing r e s e a r c h on moral r e a s o n i n g . The i n v e s t i g a t o r 56 w i l l conclude by r e a f f i r m i n g the c o n c e p t u a l i z a t i o n of the problem statement i n Chapter One. Theories of Moral Development The review of t h e o r i e s of moral development w i t h i n t h i s Chapter w i l l take d i r e c t i o n from Ornery. To b e g i n , Ornery s t a t e s that moral development can be d e f i n e d as: the process of i n t e r n a l i z i n g suggestions or a c t i o n guides that are o b l i g a t o r y (impersonal, u n a l t e r a b l e , or a h i s t o r i c ) , g e n e r a l i z a b l e , and important. These a c t i o n guides are, furthermore, based on e t h i c a l p r i n c i p l e s such as j u s t i c e or u t i l i t y and are used i n a s p e c i f i c type of s i t u a t i o n (Ornery, 1983b, p. 3). Ornery i d e n t i f e s three major c l a s s i f i c a t i o n s of models of moral development as i n c l u d i n g p s y c h o a n a l y t i c , c o g n i t i v e - d e v e l o p m e n t a l , and s o c i a l l e a r n i n g models. P s y c h o a n a l y t i c models look at moral development i n terms of the development of the superego, although the use of these models i s not apparent i n the n u r s i n g l i t e r a t u r e (Ornery, 1983b). The s o c i a l l e a r n i n g models look at s o c i e t a l i n f l u e n c e s on l e a r n e d s o c i a l behavior (Ornery, p. 6). These models are more apparent i n the e d u c a t i o n a l l i t e r a t u r e , p a r t i c u l a r l y as t h e o r i z e d by Bandura (1971). Bandura views moral development i n terms of persons a c q u i r i n g given behaviors and then 57 a p p l y i n g those behaviors i n f u t u r e s i t u a t i o n s through a process of i n s i g h t f u l e x p e c t a t i o n s and goal s e t t i n g and attainment (Bigge, 1982, p. 157). Bandura's theory of moral development emphasizes " r e c i p r o c a l i n t e r a c t i o n " between persons and t h e i r environments i n the l e a r n i n g of moral behavior (Bigge, p. 158) Cognitive-developmental models have been widely a p p l i e d i n both e d u c a t i o n a l and n u r s i n g l i t e r a t u r e . These models view moral development i n terms of "the co n v e r s i o n of c e r t a i n inherent and p r i m i t i v e a t t i t u d e s and conceptions i n t o a comprehensive set of i n t e r n a l moral standards" (Ornery, 1983b, pp. 4-5). The process of i n t e r n a l i z a t i o n i s d e s c r i b e d as an i n v a r i a n t sequence of stages p a r a l l e l i n g the person's c o g n i t i v e development ( K e t e f i a n , 1981a; Ornery). The most widely a p p l i e d c o g n i t i v e - d e v e l o p m e n t a l model has been that of Kohlberg (Ornery, 1983b). Kohlberg's model of moral development (1972; 1981) set an important h i s t o r i c a l precedent i n the c o g n i t i v e - d e v e l o p m e n t a l models because i t was the f i r s t "to embrace philosophy as e s s e n t i a l to d e f i n i n g what i s moral as the f i r s t r e q u i r e d step i n the study of moral development" (Lickona, 1976, p. 4). Lickona goes on to e x p l a i n that "[m]oral philosophy i s thus used to d e f i n e the endpoint of moral development as being j u s t i c e , and 58 to provide the moral concepts . . . to analyze observed developmental progress toward the highest form of j u s t i c e . . . " (p. 5). As was c i t e d i n Chapter One of t h i s t h e s i s , Kohlberg (1972) i d e n t i f i e s the f i n a l stage of development towards the highest form of j u s t i c e as " [ m ] o r a l i t y of i n d i v i d u a l p r i n c i p l e s of conscience that have l o g i c a l comprehensiveness and u n i v e r s a l i t y . Highest value [ s i c ] placed on human l i f e , e q u a l i t y , and d i g n i t y " (p. 15). In c r i t i q u e of Kohlberg (1972), G i l l i g a n (1977) p o s i t s a d i f f e r e n t h i e r a r c h y to address womens' m o r a l i t y of r e s p o n s i b i l i t y . G i l l i g a n proposes u n i v e r s a l care as the highest o b l i g a t i o n i n her h i e r a r c h y of moral development (Ornery, 1983b). Returning again to Chapter One of t h i s t h e s i s , i t should be noted that S u l l i v a n ' s (1977) concerns about Kohlberg's h i e r a r c h y do not appear to have been addressed i n a subsequent c o g n i t i v e developmental model. Thus we are l e f t with a h i e r a r c h y that f a i l s to d i s t i n g u i s h thought from a c t i o n , form from content, the a b s t r a c t from the concrete or the emotional from the i n t e l l e c t u a l ( S u l l i v a n , p. 15). I t would appear, then, that the c o g n i t i v e developmental models of moral reasoning give us d i r e c t i o n to look at the implementation of the 59 p r i n c i p l e of j u s t i c e , and to look at themes of r e s p o n s i b i l i t y and care f o r women. We are l e f t with l i t t l e d i r e c t i o n i n terms of men's reasoning v i s - a - v i s r e s p o n s i b i l i t y and c a r e . With both sexes we l a c k d i r e c t i o n to understand moral a c t i o n , moral content, concrete i n f o r m a t i o n and f e e l i n g s i n terms of moral r e a s o n i n g . These l a t t e r f a c e t s are l i k e l y p r e r e q u i s i t e to understanding the s i t u a t i o n a l context of moral r e a s o n i n g . Given the emphasis throughout t h i s l i t e r a t u r e review on s i t u a t i o n a l c o n s t r a i n t s as pe r c e i v e d by nurses, t h i s l e a v e s us with l i m i t e d b e n e f i t s i n a p p l y i n g c u r r e n t c o g n i t i v e - d e v e l o p m e n t a l t h e o r i e s of moral development to nurses' e t h i c a l p e r s p e c t i v e s on p r o l o n g a t i o n of the process of dy i n g . Nursing Research on Moral Reasoning The purpose of t h i s s e c t i o n of Chapter Two i s to examine the a p p l i c a t i o n of moral development models w i t h i n n u r s i n g r e s e a r c h . The t h r u s t w i t h i n n u r s i n g r e s e a r c h i s to look at moral development as i t i s evidenced by the process of moral re a s o n i n g . For the purposes of t h i s t h e s i s , moral reasoning w i l l be d e f i n e d as the process of implementing moral a c t i o n guides to make d e c i s i o n s i n e t h i c a l s i t u a t i o n s (Ornery, 1983b). A p p l i c a t i o n of Kohlberg's Model. Given the c u r r e n t 60 t h e o r e t i c a l emphasis on Kohlberg (1972; 1981), most nur s i n g r e s e a r c h on moral reasoning takes d i r e c t i o n from Kohlberg's c o g n i t i v e - d e v e l o p m e n t a l model. An e a r l y study appearing i n the n u r s i n g l i t e r a t u r e that g i v e s evidence of the a p p l i c a t i o n of Kohlberg's (1972; 1981) model was a d o c t o r a l d i s s e r t a t i o n by Schoenrock (1978/1979). In t h i s study, p a r t i c i p a n t s completed q u e s t i o n n a i r e s , the r e s u l t s of which i n d i c a t e d t hat there was "not a s i g n i f i c a n t number of nurse p a r t i c i p a n t s " at Kohlberg's higher stages of moral reasoning (Schoenrock, p. 4035-A). "A major c o n c l u s i o n was that there e x i s t e d a need to r e v i s e or develop moral content i n the b a c c a l a u r e a t e n u r s i n g c u r r i c u l u m . . . to i n c l u d e more te a c h i n g s t r a t e g i e s designed to promote moral reasoning l e v e l s i n p r o f e s s i o n a l nurses" (Schoenrock, p. 4035-A). T h i s c o n c l u s i o n has been echoed by s e v e r a l other nurse-educators (Clay, Povey & C l i f t , 1983; Johnston, 1980; Munhall, 1982; R e i l l y & Oermann, 1985; Schrock, 1980; V i t o , 1983). Crisham (1981) however, i d e n t i f i e d a l a c k of understanding i n the l i t e r a t u r e about "the r e l a t i o n s h i p of moral judgement development to d e c i s i o n making i n the p r a c t i c e of n u r s i n g " , and i n v e s t i g a t e d the " d i f f e r e n c e between nurses' responses to g e n e r a l , 61 h y p o t h e t i c a l moral dilemmas and t h e i r responses to r e a l - l i f e n u r s i n g dilemmas" (p. 104). Working from Kohlberg's c o g n i t i v e - d e v e l o p m e n t a l theory, Crisham developed a n u r s i n g dilemma t e s t to i d e n t i f y "21 r e c u r r e n t n u r s i n g moral dilemmas" from 130 s t a f f nurse i n t e r v i e w s (p. 106). More than 200 nurses of v a r y i n g e d u c a t i o n a l l e v e l s were then asked to complete a n u r s i n g dilemma t e s t and a general h y p o t h e t i c a l d e f i n i n g i s s u e s t e s t (Crisham). Crisham's (1981) r e s u l t s i n d i c a t e d that an i n c r e a s i n g l e v e l of education was r e l a t e d to a higher l e v e l of moral judgement about h y p o t h e t i c a l g e n e r a l i s s u e s , and that moral judgement about r e a l - l i f e n u r s i n g dilemmas as d e f i n e d i n the n u r s i n g dilemma t e s t was o n l y p a r t i a l l y e x p l a i n e d by l e v e l of education (p. 110). Crisham a l s o noted that "more experienced s t a f f nurses d i d not have higher moral judgement scores . . . but gave s i g n i f i c a n t l y g r e a t e r importance to p r a c t i c a l c o n s i d e r a t i o n s " (p. 110). Crisham p o s t u l a t e d that s t a f f nurses " i n t e r p r e t e d the dilemmas i n terms of the d i s t r a c t i o n s and pressures w i t h i n the h o s p i t a l m i l i e u " (p. 110). Crisham concluded by c a l l i n g f o r e l a b o r a t i o n of the s i t u a t i o n a l context of nurses' moral r e a s o n i n g . She s t a t e d that to "advance knowledge of moral judgement, i t i s necessary to c l a r i f y s i t u a t i o n a l 62 p r e s s u r e s , c o n f l i c t i n g c l a i m s , and c ontexts of p r o f e s s i o n a l dilemmas, and to i n v e s t i g a t e the i n t e r a c t i o n of these m i l i e u e f f e c t s with the p r a c t i t i o n e r ' s concepts of f a i r n e s s " (p. 110). Another nurse r e s e a r c h e r , K e t e f i a n (1981a; 1981b; 1985), has been widely c i t e d f o r her s t u d i e s of moral reasoning u t i l i z i n g Kohlberg's (1972; 1981) model. The f i r s t study by K e t e f i a n (1981a) examined whether there was a " r e l a t i o n s h i p between c r i t i c a l t h i n k i n g , e d u c a t i o n a l p r e p a r a t i o n , and l e v e l s of moral reasoning among s e l e c t e d groups of nurses" (p. 98). A l a r g e group of p r a c t i c i n g nurses completed a packet of t e s t s , the r e s u l t s of which i n d i c a t e d that "the higher the nurses' c r i t i c a l t h i n k i n g , the higher t h e i r moral reasoning was l i k e l y to be", and that "nurses who had p r o f e s s i o n a l education had more advanced l e v e l s of moral reasoning than those who had r e c e i v e d t e c h n i c a l n u r s i n g p r e p a r a t i o n " ( K e t e f i a n , 1981a, p. 102). I t should be noted that the t e s t s employed by K e t e f i a n (1981a) were closed-response and h y p o t h e t i c a l l y based. K e t e f i a n (1981a) poi n t e d out that her study was "a beginning step" and that any " i m p l i c a t i o n s drawn need[ed] to be viewed c a u t i o u s l y and t e n t a t i v e l y " (p. 102). K e t e f i a n ' s second study (1981b) addressed the 63 q u e s t i o n of whether "there i s a r e l a t i o n s h i p between moral reasoning and knowledge and v a l u a t i o n of i d e a l moral behavior i n n u r s i n g dilemmas" and whether "there [ i s ] a r e l a t i o n s h i p between moral reasoning and nurses' p e r c e p t i o n of r e a l i s t i c moral behavior i n n u r s i n g dilemmas" (p. 171). C i t i n g the importance of " [ s ] o c i a l and e d u c a t i o n a l c l i m a t e s " i n moral development, K e t e f i a n went on to p o s t u l a t e that there may be a d i f f e r e n c e between the thought processes of a moral choice and the "nature of the moral act i t s e l f " (p. 172). The same sample of nurses from the f i r s t study completed a t e s t c o n t a i n i n g seven s t o r i e s d e p i c t i n g nurses i n h y p o t h e t i c a l e t h i c a l dilemmas ( K e t e f i a n ) . Respondents chose whether or not the nurse i n the study s h o u l d engage i n a s e l e c t i o n of n u r s i n g a c t i o n s and whether or not respondents thought the nurse i n the s t o r y was l i k e l y to engage i n a s e l e c t i o n of n u r s i n g a c t i o n s ( K e t e f i a n , p. 173). P r o f e s s i o n a l l y prepared nurses demonstrated higher l e v e l s of moral reasoning i n terms of what s h o u l d be done, however there was no s i g n i f i c a n t d i f f e r e n c e between what p r o f e s s i o n a l l y and t e c h n i c a l l y prepared nurses thought was l i k e l y to happen ( K e t e f i a n , p. 175). K e t e f i a n p o i n t e d out that "the v a l i d i t y of any i n f e r e n c e s from such an assessment to what the respondent h e r s e l f might a c t u a l l y do are 64 open to q u e s t i o n " (p. 175). K e t e f i a n went on to express concern that "nurses* knowledge and v a l u e s do not seem to be t r a n s l a t e d to r e a l i t y " (p. 175) and speculated that t h i s may be because: l a r g e b u r e a u c r a c i e s . . . might u n w i t t i n g l y be f o r c i n g new and young graduates to change t h e i r p r o f e s s i o n a l o r i e n t a t i o n s to endorse values of the o r g a n i z a t i o n ; these nurses may be f a c i n g the c h o i c e of making such a change i n t h e i r values or l e a v i n g the s e t t i n g or n u r s i n g " (p. 175). What we s t a r t to see i n Crisham's (1981) and K e t e f i a n ' s (1981b) s t u d i e s i s evidence that moral reasoning i n n u r s i n g cannot be viewed o u t s i d e of a s i t u a t i o n a l c o n t e x t . By d i s t i n g u i s h i n g moral c h o i c e from moral a c t i o n , K e t e f i a n uncovered important dimensions of nurses' moral r e a s o n i n g . Her concerns p a r a l l e l those found i n the s t r e s s and burnout l i t e r a t u r e i n terms of the impact of the s i t u a t i o n a l context on n u r s i n g p r a c t i c e . The l a t e s t study by K e t e f i a n (1985) expanded on the s i t u a t i o n a l context i n terms of moral b e h a v i o r . K e t e f i a n "examined the r e l a t i o n s h i p between r o l e conceptions and r o l e d i s c r e p a n c i e s and moral behavior as a s e l e c t e d dimension of p r o f e s s i o n a l p r a c t i c e " (p. 248). Moral behavior was chosen as an index of 65 p r o f e s s i o n a l behavior ( K e t e f i a n , 1985). Using a sample of 217 r e g i s t e r e d nurses, K e t e f i a n (1985) administered the same t e s t c o n t a i n i n g s t o r i e s of nurses i n h y p o t h e t i c a l dilemmas as i n her pr e v i o u s (1981b) study. A nu r s i n g r o l e c o nception measure was a l s o administered ( K e t e f i a n , 1985). K e t e f i a n ' s (1985) f i n d i n g s i n d i c a t e d t h at strong p r o f e s s i o n a l r o l e conceptions were r e l a t e d to higher h y p o t h e t i c a l moral behavior, and that " e d u c a t i o n a l experience to a l a r g e extent shapfed] nurses' r o l e o r i e n t a t i o n " (p. 253). High p r o f e s s i o n a l r o l e c o n f l i c t r e s u l t e d i n lower h y p o t h e t i c a l moral behavior, while high p r o f e s s i o n a l r o l e o r i e n t a t i o n accompanied by high b u r e a u c r a t i c o r i e n t a t i o n r e s u l t e d i n l e s s r o l e c o n f l i c t ( K e t e f i a n , 1985, p. 253). K e t e f i a n (1985) concluded by s t a t i n g that i t " i s evident that p r o f e s s i o n a l r o l e c o n f l i c t has an adverse e f f e c t on moral behavior; e f f o r t needs to be d i r e c t e d toward reducing such c o n f l i c t and c l o s i n g the gap between b e l i e f s held and p e r c e i v e d r e a l i t y " (p. 253 ). F o l l o w i n g Crisham's (1981) and K e t e f i a n ' s (1981a; 1981b) work, R. Lamb (1985) undertook a n u r s i n g study that was founded on Kohlberg's (1972; 1981) cog n i t i v e - d e v e l o p m e n t a l model of moral reasoning but focused on the c o n t e x t u a l nature of nurses' moral 66 r e a s o n i n g . R. Lamb i n t r o d u c e d t h e i n t e n t o f h e r s t u d y a s f o l l o w s : K e t e f i a n a n d C r i s h a m h a v e i d e n t i f i e d a n a r e a m o s t w o r t h y o f s t u d y . T h e i r f i n d i n g s r a i s e m o r e q u e s t i o n s a n d i n g e n e r a l d i r e c t r e s e a r c h b a c k t o t h e r e a s s e s s m e n t o f m i l i e u e f f e c t s . I n o r d e r t o t r u l y a s s e s s t h e c o n t e x t u a l n a t u r e o f t h e p r o b l e m / a q u a l i t a t i v e e x p l o r a t o r y a p p r o a c h i s n e e d e d ; t h i s a p p r o a c h e x p l o r e s t h e r e g i s t e r e d n u r s e ' s v i e w o f t h e s u b s t a n t i v e s i t u a t i o n . C o n c e p t s a n d t h e m e s w h i c h a r e g r o u n d e d i n t h e n u r s e ' s s u b j e c t i v e w o r l d v i e w may h e l p i d e n t i f y a s y e t u n k n o w n v a r i a b l e s w h i c h w i l l a d d t o w h a t i s a l r e a d y k n o w n a b o u t p a t t e r n s o f r e a s o n i n g i n c o n f l i c t s i t u a t i o n s o f a n e t h i c a l n a t u r e ( p . 8 ) . M o r e s p e c i f i c a l l y , R. Lamb p o s e d h e r r e s e a r c h q u e s t i o n a s : " T h i s s t u d y f o c u s e s o n m u l t i p l e l o y a l t y c o n f l i c t s w h i c h i n v o l v e p r o b l e m s p e r t a i n i n g t o p a t i e n t a u t o n o m y a n d e x p l o r e s t h e u n d e r l y i n g p a t t e r n s o f r e a s o n i n g w h i c h s e r v e t o s u b s t a n t i a t e r a t i o n a l e s f o r b o t h t h e a c t u a l a n d t h e p r e f e r r e d d e c i s i o n o u t c o m e " ( p . 4 ) . R. Lamb ( 1 9 8 5 ) e m p l o y e d a q u a l i t a t i v e , g r o u n d e d t h e o r y m e t h o d o l o g y t o c o n d u c t s e m i - s t r u c t u r e d , i n - d e p t h i n t e r v i e w s w i t h e l e v e n n u r s e s o f v a r y i n g b a c k g r o u n d s . R. L a m b ' s a n a l y s i s " i n c o r p o r a t e d a c o n t i n u a l r e f e r r a l 67 to and assessment of p a t t e r n s of reasoning as d e t a i l e d in c o g n i t i v e moral development theory", and sought "core concepts . . . from w i t h i n the data . . . that would provide a view to the nurse's s u b j e c t i v e experience at the time" (p. 31). S i t u a t i o n s d e s c r i b e d by R. Lamb's respondents that i n v o l v e d " c o n f l i c t of l o y a l t y s i t u a t i o n s with t h e i r b e l i e f s about p a t i e n t autonomy" i n c l u d e d : "(a) i n t r a p e r s o n a l c o n f l i c t s with p e r s o n a l - p r o f e s s i o n a l ambivalence . . .; (b) i n t r a p r o f e s s i o n a l d i f f i c u l t i e s between nurses . . .; (c) i n t e r p r o f e s s i o n a l problems with p h y s i c i a n s and s o c i a l workers . . .; (d) a m b i g u i t i e s a r i s i n g between d u t i e s to the i n s t i t u t i o n versus those to the p r o f e s s i o n i t s e l f . . ." (p. 34). B u i l d i n g on Schutz's (1970) n o t i o n of s u b j e c t i v e meaning, R. Lamb presented the f o l l o w i n g core concepts i n her a n a l y s i s : 1. Imposed r e l e v a n c e . The p e r c e p t i o n of i n e q u a l i t y based on a set of f i r m l y held e x p e c t a t i o n s . 2. Bounded r e l e v a n c e . The p e r c e p t i o n of l i m i t a t i o n s based on the need to maintain r e l a t i o n s h i p s or uphold r u l e s . 3. V o l i t i o n a l r e l e v a n c e . The p e r c e p t i o n of e q u a l i t y expressed as the r i g h t to p a r t i c i p a t e and to make c h o i c e s congruent with s e l f chosen e t h i c a l 68 p r i n c i p l e s (pp. 37-38). R. Lamb's (1985) r e s u l t s i n d i c a t e d t h a t : 1. given nurses' p e r c e p t i o n s of imposed r e l e v a n c e , nurses would r e s o r t to lower l e v e l s of Kohlberg's model of moral reasoning and experience themes of resentment, anger, and revenge, l e a d i n g to symptoms of severe c o g n i t i v e dissonance and u n s a t i s f a c t o r y p a t i e n t c a r e . 2. given nurses' p e r c e p t i o n s of bounded r e l e v a n c e , nurses would r e s o r t to mid-range l e v e l s of moral reasoning and experience e t h i c a l dilemmas with l o s s e s noted i n the q u a l i t y of p a t i e n t c a r e . 3. given nurses' p e r c e p t i o n s of v o l i t i o n a l r e l e v a n c e , nurses would adhere to higher l e v e l s of moral reasoning and experience themes of c o o p e r a t i o n and a c c o u n t a b i l i t y with r e s u l t a n t high q u a l i t y p a t i e n t care (pp. 165-167). R. Lamb's (1985) study marks an important step i n nurs i n g r e s e a r c h on moral r e a s o n i n g . Her use of a q u a l i t a t i v e e x p l o r a t o r y approach r e s u l t e d i n the e x p l i c a t i o n of concepts and themes that e l a b o r a t e d on the s i t u a t i o n a l context of nurses' moral r e a s o n i n g . T h i s i n v e s t i g a t o r i s , however, l e f t wondering why i t was that some nurses' p e r c e p t i o n s of rele v a n c e were d i f f e r e n t from o t h e r s . I t appears that R. Lamb's study 69 continues to support the n o t i o n of a h i e r a r c h y of moral reasoning, with some nurses b e t t e r prepared to uphold Kohlberg's (1972; 1981) higher stages. A l t e r n a t e Approaches to Moral Reasoning. As was i l l u s t r a t e d i n the previous s e c t i o n , most n u r s i n g r e s e a r c h on moral reasoning takes d i r e c t i o n from Kohlberg's (1972; 1981) c o g n i t i v e - d e v e l o p m e n t a l model. Given that Kohlberg's model does not address themes of r e s p o n s i b i l i t y and care f o r women or address moral a c t i o n , moral content, concrete i n f o r m a t i o n or f e e l i n g s , the c u r r e n t emphasis on Kohlberg i s of some concern to t h i s i n v e s t i g a t o r . I t i s t h e r e f o r e r e l e v a n t to examine those n u r s i n g r e s e a r c h s t u d i e s on moral reasoning that depart from Kohlberg and attempt to examine the uniqueness of moral reasoning w i t h i n the context of nu r s i n g p r a c t i c e . In c o n c l u d i n g her review of the dominant models of moral development, Ornery (1983b) c a l l e d f o r f u r t h e r e x p l o r a t i o n of "the process by which we can expedite more p r i n c i p l e d t h i n k i n g i n o u r s e l v e s and i n the c l i e n t " (p. 15). Ornery (1985) t h e r e f o r e set out to examine "the composition of the moral reasoning used by nurses when they are faced with a moral dilemma i n t h e i r p r o f e s s i o n a l p r a c t i c e " (p. 3). Using a phenomenological approach, Ornery (1985) 70 intervi e w e d 10 nurses working i n s t a f f nurse p o s i t i o n s in an ICU. Major c h a r a c t e r i s t i c s of nurses' moral reasoning i n c l u d e d " p r i n c i p l e s , mediating f a c t o r s , and modes of re a s o n i n g " (p. 6). Ornery i d e n t i f i e d two unique modes of reasoning as i n c l u d i n g accommodating and sovereign modes of reasoning (p. 7). "In accommodating reasoning, reasoners a d j u s t e d , adapted, or r e c o n c i l e d t h e i r moral judgements to conform with the p e r c e i v e d norm of the dominant group. . . . Sovereign reasoners based t h e i r moral judgement on s e l f - c h o s e n moral p r i n c i p l e s which were valued by that i n d i v i d u a l " (Ornery, pp. 7-8). Ornery noted that the ma j o r i t y of the nurses inter v i e w e d were s o v e r e i g n r e a s o n e r s . Nurses' choice of p r i n c i p l e s on which to base t h e i r d e c i s i o n s were i n f l u e n c e d by mediating f a c t o r s , which "would compel or r e s t r a i n the moral reasoner i n t h e i r judgement to apply a p a r t i c u l a r moral p r i n c i p l e " (p. 8). Mediating f a c t o r s i n c l u d e d o b j e c t i v e f a c t s , s p e c i f i c i n d i v i d u a l s , and i n t e r p e r s o n a l dynamics (pp. 14-15). In comparing her f i n d i n g s with the e s t a b l i s h e d models of moral reasoning, Ornery (1985) noted a s i m i l a r i t y i n that the modes of reasoning were " q u a l i t a t i v e l y d i f f e r e n t from one another" (p. 10). In other words, sov e r e i g n reasoners c l e a r l y implemented a 71 d i f f e r e n t kind of process than that of accommodating reason e r s . T h i s i s s i m i l a r to the d i f f e r e n c e s i n processes noted by Kohlberg (1972; 1981) between h i s stages. However, Ornery's f i n d i n g s d i d not i n d i c a t e that the modes were developmental or mutually e x c l u s i v e (p. 10). In comparing her f i n d i n g s with G i l l i g a n ' s (1977), Ornery noted s i m i l a r i t y i n that the p r i n c i p l e of r e s p o n s i b i l i t y was " i d e n t i f i e d i n the t h i n k i n g of a l l the r e a s o n e r s " (p. 11). R e s p o n s i b i l i t y f o r s o v e r e i g n t h i n k e r s a l s o i n c l u d e d r e s p o n s i b i l i t y f o r s e l f (p. 12). However, the p r i n c i p l e of honesty was a l s o fundamental f o r a l l the r e a s o n e r s . T h i s f i n d i n g again r e f l e c t s nurses' concerns about the . importance of d i s c l o s u r e with t h e i r p a t i e n t s and f a m i l i e s . What we see i n Omery's (1985) work, then, i s an emphasis on s i t u a t i o n a l c o n s t r a i n t s i n terms of mediating f a c t o r s , as w e l l as a focus on the p r i n c i p l e of honesty. C h a l l e n g i n g the adherence to t r a d i t i o n a l e t h i c a l p r i n c i p l e s and c o g n i t i v e developmental t h e o r i e s , Ornery concluded that i t "would seem to behoove nurse p h i l o s o p h e r s to b e g i [ n ] to q u e s t i o n the t r a d i t i o n a l d i a l o g u e s " (pp. 20-21). A second n u r s i n g r e s e a r c h study that c h a l l e n g e d the t r a d i t i o n a l d i a l o g u e s was undertaken by W i l k i n s o n (1985). W i l k i n s o n set out to generate " s u b s t a n t i v e 72 theory about the r e l a t i o n s h i p s between the moral aspects of nu r s i n g p r a c t i c e and the q u a l i t y of p a t i e n t c a r e " (p. 1). More s p e c i f i c a l l y , W i l k i n s o n ' s purpose "was to explore the phenomenon of moral d i s t r e s s as experienced by s t a f f nurses i n the context of t h e i r p r a c t i c e " (p. 1). Wil k i n s o n used Jameton's (1984) d e f i n i t i o n of moral d i s t r e s s as "when one knows the r i g h t t h i n g to do, but i n s t i t u t i o n a l c o n s t r a i n t s make i t n e a r l y impossible to pursue the r i g h t course of a c t i o n " (Jameton, p. 6). Wilkinson (1985) employed a "survey approach . . . to y i e l d q u a l i t a t i v e data" (p. 32), and in t e r v i e w e d 24 nurses, 13 of whom worked as h o s p i t a l s t a f f nurses, and 11 of whom had l e f t the bedside (p. 34). Wi l k i n s o n ' s c l a s s i f i c a t i o n of the cases of moral d i s t r e s s i n c l u d e d "coding p a t i e n t s who are dyin g " and "prolonging l i f e . . . when there i s no hope f o r meaningful l i f e " (p. 55). " P u l l i n g the plug or 'No Code' o r d e r s " was a l s o a category, but i n d i c a t e d nurses' d i f f i c u l t y when treatment measures were withdrawn (p. 55). T h i s f i n d i n g i s thus s i m i l a r to one of Fenton's (1987), and supports the premise of t h i s t h e s i s that we cannot assume how i n d i v i d u a l nurses w i l l i n t e r p r e t the e t h i c s of n u r s i n g p a t i e n t s e x p e r i e n c i n g p r o l o n g a t i o n of the process of d y i n g . 73 Wil k i n s o n (1985) r e p o r t e d that moral d i s t r e s s arose out of p a t i e n t care s i t u a t i o n s i n which a moral i s s u e was embedded, most commonly "harm to the p a t i e n t ( i n the form of pain and s u f f e r i n g ) and t r e a t i n g the person as an o b j e c t (dehumanizing). Other moral p r i n c i p l e s i n v o l v e d were: use of scarce r e s o u r c e s , k i l l i n g , p a t i e n t autonomy, l y i n g , and f a i l u r e to b e n e f i t " ( W i l k i n s o n , p. 68). Moral d i s t r e s s hinged on nurse's p e r c e p t i o n s of the s i t u a t i o n a l c o n s t r a i n t s more than the a c t u a l c o n s t r a i n t s . Major sources of s i t u a t i o n a l c o n s t r a i n t s i n c l u d e d p h y s i c i a n s , n u r s i n g a d m i n i s t r a t i o n , h o s p i t a l p o l i c y and a d m i n i s t r a t i o n and fe a r of l a w s u i t s (Wilkinson, p. 74). Lack of support from peers was a l s o an important source of p e r c e i v e d c o n s t r a i n t s (Wilkinson, p. 74). S i m i l a r to R. Lamb's (1985) f i n d i n g s with nurses who had p e r c e p t i o n s of imposed r e l e v a n c e , W i l k i n s o n ' s respondents r e p o r t e d e x p e r i e n c i n g f e e l i n g s of anger, f r u s t r a t i o n and g u i l t i n s i t u a t i o n s that c r e a t e d moral d i s t r e s s (p. 96). I n t e r e s t i n g l y , " s u b j e c t s who p e r c e i v e d the p h y s i c i a n as 'the decision-maker' and the nurse as ' o r d e r - f o l l o w e r ' experienced l e s s g u i l t than those with a strong f e e l i n g f o r n u r s i n g autonomy and per s o n a l moral r e s p o n s i b i l i t y " ( W ilkinson, p. 96). Wilkin s o n ' s (1985) f i n d i n g s i n d i c a t e that nurses' 74 responses are to untenable p a t i e n t care s i t u a t i o n s . Anger, f r u s t r a t i o n and g u i l t appear to a r i s e because the nurse i s unable to f u l f i l l her r o l e . In c o n t r a s t with many other s t u d i e s , W i l k i n s o n ' s r e s u l t s i n d i c a t e that nurses' e t h i c a l d i f f i c u l t i e s do not r e s i d e i n nurses' moral reasoning a b i l i t i e s per se, but r a t h e r i n t h e i r experiences of untenable p a t i e n t care s i t u a t i o n s . W i l k i n s o n (1985) f u r t h e r i n d i c a t e s that "nurses' wholeness i s damaged by frequent moral d i s t r e s s and the r e s u l t i n g p s y c h o l o g i c a l d i s e q u i l i b r i u m " , although the e f f e c t on p a t i e n t care was d i f f i c u l t to determine (p. 115). I t would thus appear that nurses' responses to moral d i s t r e s s as d e s c r i b e d by W i l k i n s o n are s i m i l a r to nurses' responses as d e s c r i b e d i n the burnout l i t e r a t u r e . / Summary of Nursing Research on Moral Reasoning. In review of the n u r s i n g r e s e a r c h on moral reasoning, we f i n d that s t u d i e s implementing Kohlberg's (1972; 1981) model demonstrate higher h y p o t h e t i c a l moral reasoning a b i l i t i e s a s s o c i a t e d with i n c r e a s i n g l e v e l s of n u r s i n g e d u c a t i o n . There i s growing i n t e r e s t i n the n u r s i n g education community to promote improved moral reasoning of nurses v i s - a - v i s Kohlberg's model. However, n u r s i n g r e s e a r c h has a l s o shown that nurses' moral c h o i c e may 75 / not t r a n s l a t e i n t o moral a c t i o n , probably due to nurses' p e r c e p t i o n s of s i t u a t i o n a l c o n s t r a i n t s . There i s some i n d i c a t i o n t h a t s i t u a t i o n a l c o n s t r a i n t s may a l s o e n t a i l r o l e c o n f l i c t f o r nurses ( K e t e f i a n , 1985). R. Lamb's (1985) study i n d i c a t e s that nurses' a b i l i t i e s to implement the higher stages of Kohlberg's model w i l l be contingent on t h e i r p e r c e p t i o n s of t h e i r own e q u a l i t y with other p r o f e s s i o n a l s i n t h e i r m i l i e u . Two recent n u r s i n g s t u d i e s (Ornery, 1985; W i l k i n s o n , 1985) adopt a l t e r n a t e approaches that f u r t h e r e x p l o r e nurses' moral r e a s o n i n g . Ornery's study p o s t u l a t e s a d i f f e r e n t model of moral reasoning that p l a c e s emphasis on s i t u a t i o n a l c o n s t r a i n t s and focuses more on the p r i n c i p l e of honesty. W i l k i n s o n ' s study i n d i c a t e s that nurses experience moral d i s t r e s s when they are unable to t r a n s l a t e moral choice i n t o moral a c t i o n . Moral d i s t r e s s i s thought by W i l k i n s o n to damage nurses' wholeness. Given c u r r e n t models of moral development that f a i l to f u l l y e x p l a i n nurses' moral behavior and given the importance of i n d i v i d u a l nurses' values and p e r c e p t i o n s of s i t u a t i o n a l c o n s t r a i n t s , we l a c k a u n i f i e d approach to understanding nurses' moral r e a s o n i n g . Hence, we cannot assume what i n d i v i d u a l nurses' moral reasoning w i l l be i n r e l a t i o n to p r o l o n g a t i o n of the process of 76 dying of t h e i r p a t i e n t s . T h e r e f o r e , t h i s study w i l l attempt to uncover the e t h i c a l p e r s p e c t i v e s of nurses, i n c l u d i n g t h e i r p e r s p e c t i v e s of t h e i r moral c h o i c e s and moral a c t i o n . Summary The purpose of t h i s chapter has been to provide a review of l i t e r a t u r e r e l a t e d to the c o n c e p t u a l i z a t i o n of the problem statement i n Chapter One: I n t r o d u c t i o n . P e r t i n e n t r e s e a r c h and t h e o r e t i c a l works were explored to f u r t h e r s u b s t a n t i a t e the c o n c e p t u a l i z a t i o n . In Chapter Four: P r e s e n t a t i o n and D i s c u s s i o n of Accounts, the i n v e s t i g a t o r w i l l take d i r e c t i o n from the accounts to re-examine the l i t e r a t u r e reviewed and to i n c o r p o r a t e a d d i t i o n a l works to enhance the d i s c u s s i o n . P e r t i n e n t l i t e r a t u r e on the e t h i c a l r a m i f i c a t i o n s of p r o l o n g a t i o n of the process of dying was explo r e d i n terms of r e l a t e d e t h i c a l i s s u e s and r e l a t e d e t h i c a l r e s e a r c h . P r o l o n g a t i o n of the process of dying was i d e n t i f i e d as an e t h i c a l problem a r i s i n g i n the context of c r i t i c a l j u s t i f i c a t i o n of human b e l i e f s i n an attempt to determine moral value or d i s v a l u e of the performance of the h e a l t h care system. E t h i c a l i s s u e s , or some of the more a b s t r a c t n o t i o n s w i t h i n which the e t h i c a l problem of p r o l o n g a t i o n of the process of dying 77 i s subsumed, i n c l u d e d the d e f i n i t i o n and d e t e r m i n a t i o n of death, euthanasia, and treatment abatement. Related e t h i c a l r e s e a r c h focused on d e s c r i p t i o n s of nurses' experiences i n e t h i c a l s i t u a t i o n s , and was approached f i r s t by examining e a r l y s t u d i e s of the e t h i c s of n u r s i n g p r a c t i c e , secondly by examining the e t h i c s of r e s u s c i t a t i o n , and f i n a l l y by examining recent s t u d i e s of nurses* e t h i c a l p e r c e p t i o n s . In review of the e a r l y s t u d i e s of the e t h i c s of n u r s i n g p r a c t i c e , a l a r g e survey (Nursing '74a & b) i n d i c a t e d that nurses f e l t f r u s t r a t e d by t h e i r i n a b i l i t y to intervene i n the p a t i e n t ' s b e h a l f , and f e l t concerned about p r o l o n g i n g l i f e with a r t i f i c i a l means. A second survey ( A l l e n , 1974) i d e n t i f i e d nurses as e x p e r i e n c i n g s i t u a t i o n s i n which t h e i r care of p a t i e n t s was i n c o n f l i c t with other sources. A t h i r d study (Davitz & D a v i t z , 1975) emphasized the emotional involvement experienced by nurses working with p a t i e n t s who are s u f f e r i n g , p a r t i c u l a r l y those p a t i e n t s who are d y i n g . The s t u d i e s reviewed on the r e s u s c i t a t i o n of c r i t i c a l l y i l l p a t i e n t s i l l u s t r a t e d that c o n s i d e r a t i o n s such as q u a l i t y of l i f e and proxy decision-making may be taken i n t o account, but that treatment abatement i n terms of r e s u s c i t a t i o n may take p l a c e without withdrawal of other t e c h n o l o g i c a l i n t e r v e n t i o n s . 78 R e s u s c i t a t i o n d e c i s i o n s appeared to be of concern to nurses, and the care of p a t i e n t s designated as 'do not r e s u s c i t a t e ' was seen to absorb s i g n i f i c a n t n u r s i n g resources i n the ICU. Recent r e s e a r c h on n u r s i n g was noted to be f o c u s i n g more p u r p o s e f u l l y on nurses' e t h i c a l p e r c e p t i o n s . P r o l o n g a t i o n of the process of dying emerged as a c e n t r a l e t h i c a l problem, and became i n c r e a s i n g l y c l a r i f i e d i n terms of nurses' concerns about d i s c l o s u r e to the p a t i e n t and f a m i l y , l o s s of p a t i e n t d i g n i t y , p a t i e n t comfort, v i o l a t i o n of p a t i e n t ' s r i g h t s or wishes, and f a m i l y s u f f e r i n g . Nurses' p e r c e p t i o n s of p r o l o n g a t i o n of the process of dying were embedded i n the context of s i t u a t i o n a l c o n s t r a i n t s such as c o n f l i c t s with p h y s i c i a n s and l a c k of a d m i n i s t r a t i v e support. Nurses' responses appeared to evolve over time, and i n c u r r e d s i g n i f i c a n t emotional involvement. In order to understand how nurses are b e l i e v e d to make d e c i s i o n s i n the context of an e t h i c a l problem, l i t e r a t u r e was examined i n terms of nurses' moral r e a s o n i n g . T h e o r i e s of moral development were reviewed, with the c o n c l u s i o n that the dominant c o g n i t i v e development models give us d i r e c t i o n to look at the implementation of the p r i n c i p l e of j u s t i c e and to look at themes of r e s p o n s i b i l i t y and care f o r 79 women. We are l e f t with l i t t l e d i r e c t i o n i n terms of mens 1 reasoning v i s - a - v i s r e s p o n s i b i l i t y and c a r e . With both sexes we l a c k d i r e c t i o n to understand moral a c t i o n , moral content, concrete i n f o r m a t i o n and f e e l i n g s i n terms of moral r e a s o n i n g . Nursing r e s e a r c h on moral reasoning i n c l u d e d s t u d i e s implementing Kohlberg's (1972; 1981) model that demonstrated higher h y p o t h e t i c a l moral reasoning a b i l i t i e s a s s o c i a t e d with i n c r e a s i n g l e v e l s of n u r s i n g e d u c a t i o n . However, nu r s i n g r e s e a r c h has a l s o i n d i c a t e d t hat nurses' p e r c e p t i o n s of s i t u a t i o n a l c o n s t r a i n t s o f t e n mean that moral c h o i c e i s not t r a n s l a t e d i n t o moral a c t i o n . A consequence of nurses' i n a b i l i t y to t r a n s l a t e moral c h o i c e i n t o moral a c t i o n may be moral d i s t r e s s ; a consequence that may damage nurses' wholeness and l e a d to burnout and a t t r i t i o n . C o n c l u s i o n s Throughout t h i s review of r e l a t e d l i t e r a t u r e we have r e c u r r e n t p i c t u r e s of c r i t i c a l care nurses bound by s i t u a t i o n a l c o n s t r a i n t s . In the e t h i c a l l i t e r a t u r e , s i t u a t i o n a l c o n s t r a i n t s such as c o n f l i c t s with the p h y s i c i a n and l a c k of support from a d m i n i s t r a t i o n g i v e r i s e to e t h i c a l problems. These s i t u a t i o n a l c o n s t r a i n t s are p a r a l l e l e d i n the s t r e s s and burnout l i t e r a t u r e . Burnout and a t t r i t i o n have come to be 80 viewed as nurses' responses to e t h i c a l problems such as p r o l o n g a t i o n of the process of dy i n g . However, i t i s not c l e a r from the l i t e r a t u r e what other kinds of responses nurses may make to e t h i c a l problems such as p r o l o n g a t i o n of the process of dy i n g . In the moral reasoning l i t e r a t u r e , s i t u a t i o n a l c o n s t r a i n t s such as la c k of support from peers w i l l mean that c r i t i c a l care nurses are o f t e n not able to t r a n s l a t e moral c h o i c e i n t o moral a c t i o n . Also emphasized throughout t h i s l i t e r a t u r e review i s that we cannot understand s i t u a t i o n a l c o n s t r a i n t s unless we understand i n d i v i d u a l nurses' p e r c e p t i o n s of those c o n s t r a i n t s . P e r c e p t i o n s of e t h i c a l problems, and s i m i l a r l y p e r c e p t i o n s of s t r e s s , appear to be c l o s e l y l i n k e d with nurses' attempts to cope with those p e r c e p t i o n s . P e r c e p t i o n s and coping appear to change over time. One of the s t r o n g e s t p i c t u r e s i n t h i s l i t e r a t u r e review has been the emotional involvement of nurses i n p r o v i d i n g care to t h e i r dying p a t i e n t s . To r e i t e r a t e D a v i t z and D a v i t z ' s (1975) c o n c l u s i o n , "[p]erhaps the only c o n c l u s i o n that needs to be drawn i s a r e a f f i r m a t i o n of the n e c e s s i t y to continue, and even expand, our concern f o r those who face the f a c t of m o r a l i t y i n t h e i r everyday p r o f e s s i o n a l l i v e s " (p. 81 1510). Within t h i s t h e s i s , that concern has l e d to a r e s e a r c h q u e s t i o n that seeks to improve our understanding of nurses' e t h i c a l p e r s p e c t i v e s of nursing dying p a t i e n t s i n a c r i t i c a l care s e t t i n g . Nurses' e t h i c a l p e r s p e c t i v e s w i l l e n t a i l nurses' knowledge of and f e e l i n g s about t h e i r experiences c a r i n g f o r p a t i e n t s undergoing p r o l o n g a t i o n of the process of dying w i t h i n a s i t u a t i o n a l c o n t e x t . P e r s p e c t i v e s w i l l a l s o e n t a i l nurses' p e r c e p t i o n s of t h e i r moral c h o i c e s and moral a c t i o n . I t i s hoped that i n c l u d i n g nurses' knowledge and f e e l i n g s as w e l l as nurses' p e r c e p t i o n s of t h e i r moral c h o i c e s and moral a c t i o n w i l l a l s o begin to uncover nurses' responses to t h e i r e t h i c a l p e r s p e c t i v e s . CHAPTER THREE: METHODOLOGY I n t r o d u c t i o n Phenomenology was chosen as the methodological p e r s p e c t i v e f o r t h i s t h e s i s i n order to provide a f u l l and accurate d e s c r i p t i o n of i n d i v i d u a l nurses' e t h i c a l p e r s p e c t i v e s . Given phenomenology 1s emphasis on the c o n s t r u c t i o n of meaning w i t h i n an i n t e r s u b j e c t i v e s o c i a l r e a l i t y , the i n v e s t i g a t o r f e l t t h a t a phenomenological approach would best explore the m u l t i p l e f a c e t s of nurses' e t h i c a l p e r s p e c t i v e s . Furthermore, as a branch of e x i s t e n t i a l i s m , phenomenology d i r e c t e d the i n v e s t i g a t o r to seek to understand nurses i n "concrete l i v e d s i t u a t i o n s and l i v e d moments" as w e l l as nurses' responses to those moments (Rieman, 1986, p. 89). Thi s chapter w i l l e x p l a i n the a p p l i c a t i o n of phenomenology as a methodology f o r t h i s t h e s i s . Therefore the i n v e s t i g a t o r w i l l e x p l a i n the s e l e c t i o n of the study group and the process of data c o l l e c t i o n and a n a l y s i s . S e l e c t i o n o f t h e S t u d y G r o u p I n t r o d u c t i o n Phenomenology r e p r e s e n t s an i n d u c t i v e approach to theory, which i n d i c a t e s that meaning i s sought from 83 data (Morse, 1986, p. 182). The s e l e c t i o n of a study group, t h e r e f o r e , seeks to o b t a i n p a r t i c i p a n t s who are q u a l i f i e d i n terms of t h e i r knowledge base and r e c e p t i v i t y to r e p r e s e n t that meaning (Anderson, 1985; Morse; O i l e r , 1982). For the purpose of t h i s t h e s i s , q u a l i f i e d p a r t i c i p a n t s were those nurses who had experience n u r s i n g dying p a t i e n t s i n c r i t i c a l care s e t t i n g s and who were w i l l i n g to be i n t e r v i e w e d . The use of phenomenology as a methodology seeks to o b t a i n data that are "comprehensive, r e l e v a n t and d e t a i l e d " , so a small sample s i z e i s chosen i n i t i a l l y f o r in-depth i n t e r v i e w s (Morse, 1986, p. 183). Given concurrent data c o l l e c t i o n and a n a l y s i s , sampling of p a r t i c i p a n t s and data c o l l e c t i o n "ceases when the [data] i s complete, does not have gaps, makes sense, and has been confirmed" (Morse, p. 184). Sampling f o r t h i s t h e s i s meant choosing an i n i t i a l seven p a r t i c i p a n t s f o r in-depth i n t e r v i e w s . As the i n t e r v i e w s progressed, i t became apparent that the a n a l y s i s r e q u i r e d a p a r t i c i p a n t to provide a d d i t i o n a l d a ta. Therefore an e i g h t h p a r t i c i p a n t was added. C r i t e r i a f o r P a r t i c i p a t i o n S e l e c t i o n of p a r t i c i p a n t s met the c r i t e r i a of a p p r o p r i a t e n e s s and adequacy d e s c r i b e d by Morse (1986): "Appropriateness r e f e r s to the degree i n which 84 t h e method o f s a m p l i n g ' f i t s ' t h e p u r p o s e o f t h e s t u d y a s d e t e r m i n e d b y t h e r e s e a r c h q u e s t i o n . . . . Adequacy r e f e r s to the s u f f i c i e n c y and q u a l i t y of the data" (Morse, p. 185). In terms of t h i s t h e s i s , e n s u r i n g a p p r o p r i a t e n e s s meant that nurses who c o u l d best d e s c r i b e the experience of n u r s i n g dying p a t i e n t s i n a c r i t i c a l care s e t t i n g were chosen. Ensuring adequacy meant that an a d d i t i o n a l p a r t i c i p a n t was added, and most p a r t i c i p a n t s were interv i e w e d two to three times. More s p e c i f i c a l l y , nurses who were c u r r e n t l y or had r e c e n t l y been employed at the bedside i n a general adult ICU or a d u l t s u r g i c a l ICU i n a t e r t i a r y care h o s p i t a l f o r ' a t l e a s t one year were chosen. P r o l o n g a t i o n of the process of dying takes p l a c e most f r e q u e n t l y i n general a d u l t ICU's, and t h e r e f o r e most p a r t i c i p a n t s spoke of experiences i n that s e t t i n g . The e i g h t h p a r t i c i p a n t was chosen to r e p r e s e n t someone with l e s s than a year's c r i t i c a l care n u r s i n g experience to f u r t h e r e x p l o r e how nurses' experiences changed over time. Nurses were a l s o chosen from two d i f f e r e n t t e r t i a r y h o s p i t a l s from w i t h i n the c i t y i n order to represent experiences with d i f f e r e n t kinds of p a t i e n t p o p u l a t i o n s and o r g a n i z a t i o n a l c l i m a t e s i n r e l a t i o n to p r o l o n g a t i o n of the process of d y i n g . To add to the q u a l i t y of the data, nurses' accounts of p r e v i o u s 85 experiences in n eonatal, p e d i a t r i c and open heart s u r g i c a l ICU's in other h o s p i t a l s were i n c l u d e d . Female nurses were s e l e c t e d because of the c o n f l i c t i n g views of moral reasoning d i s c u s s e d e a r l i e r in Chapter One and Two. The i n v e s t i g a t o r d i d not wish to address p o t e n t i a l gender d i f f e r e n c e s w i t h i n t h i s t h e s i s . One f i n a l note i n terms of c r i t e r i a f o r p a r t i c i p a t i o n i n the study group i n v o l v e d the i n v e s t i g a t o r ' s p r e v i o u s r o l e i n one of the h o s p i t a l s as a c r i t i c a l care i n s t r u c t o r . The phenomenological method has been d e s c r i b e d as "approaching the phenomenon with no preconceived e x p e c t a t i o n s or c a t e g o r i e s . . . and then e x p l o r i n g the meaning of the experience as i t u n f o l d s f o r the p a r t i c i p a n t s " (Ornery, 1983a, p. 54). In order to minimize preconceived e x p e c t a t i o n s between the i n v e s t i g a t o r and p a r t i c i p a n t s , the i n v e s t i g a t o r s e l e c t e d p a r t i c i p a n t s from her previous h o s p i t a l whom she had not s u p e r v i s e d . Given that the i n v e s t i g a t o r had ceased employment i n the h o s p i t a l at the time of the study, the i n v e s t i g a t o r d i d not f i n d the i n t e r v i e w s with p a r t i c i p a n t s from her p r evious h o s p i t a l to be c o n s t r a i n e d . Procedure f o r P a r t i c i p a n t S e l e c t i o n The procedure f o r p a r t i c i p a n t s e l e c t i o n p r i m a r i l y 86 i n v o l v e d a snowball sampling technique. Morse (1986) d e s c r i b e s the snowball sampling technique as f o l l o w s : [ T h i s ] method of sampling i s to i n i t i a l l y s e l e c t informants who are r e c e p t i v e and knowledgeable; a f t e r the s e l e c t e d informants are i n t e r v i e w e d , they are requested to introduce the r e s e a r c h e r to other informed persons f o r subsequent i n t e r v i e w s . In t h i s sampling design, r e c e p t i v i t y problems are p a r t i a l l y overcome, as some t r u s t i s e s t a b l i s h e d through i n t r o d u c t i o n s by a mutual acquaintance, and the r e s e a r c h e r i s using the f i r s t informant's judgement that the next informant has some knowledge of the t o p i c (p. 184). I n i t i a l r e cruitment of s e l e c t e d p a r t i c i p a n t s took place by a d v e r t i s i n g through the l o c a l chapter conference of the Canadian A s s o c i a t i o n of C r i t i c a l Care Nurses (C.A.C.C.N.) (see Appendix A). Those nurses i n t e r e s t e d i n p a r t i c i p a t i n g i n the study were asked to c o n t a c t the author by telephone, and a l e t t e r of i n f o r m a t i o n was given to nurses e x p r e s s i n g i n t e r e s t at the C.A.C.C.N, conference (see Appendix B). A second advertisement was placed i n a l o c a l C.A.C.C.N, gen e r a l membership m a i l i n g a month l a t e r . Two p a r t i c i p a n t s were obtained through t h i s i n i t i a l r e c r u i t m e n t . Subsequent recruitment of a t h i r d p a r t i c i p a n t took 87 place through r e f e r r a l by a n u r s i n g a s s o c i a t e . T h i s t h i r d p a r t i c i p a n t then introduced the r e s e a r c h e r to four other nurses f o r the study, thereby f a c i l i t a t i n g r e c e p t i v i t y and t r u s t of the next four p a r t i c i p a n t s . The e i g h t h p a r t i c i p a n t was obtained through r e f e r r a l by another n u r s i n g a s s o c i a t e . A l l e i g h t p a r t i c i p a n t s v o l u n t e e r e d to be inter v i e w e d f o r the study, and were given a l e t t e r of i n f o r m a t i o n and asked to s i g n a consent form (see Appendix B). C h a r a c t e r i s t i c s of the P a r t i c i p a n t s Within t h i s s e c t i o n of Chapter Three, c h a r a c t e r i s t i c s of the p a r t i c i p a n t s w i l l be summarized to p rovide a context i n which to view each p a r t i c i p a n t ' s i n t e r p r e t a t i o n of the meaning of her e x p e r i e n c e s . Each p a r t i c i p a n t has been i d e n t i f i e d by a code (PI* through to P8) to enable i d e n t i f i c a t i o n of the range of responses i n Chapter Four. P a r t i c i p a n t s ' years of experience i n c r i t i c a l care nursing ranged from l e s s than one year (P8) to seven y e a r s . .Six p a r t i c i p a n t s (P3, P4, P5, P6, P7 and P8) had c r i t i c a l care n u r s i n g experience i n one general a d u l t ICU. One p a r t i c i p a n t (P2) had c r i t i c a l care P = P a r t i c i p a n t 88 n u r s i n g experience i n a general a d u l t ICU, an a d u l t post-open-heart s u r g i c a l u n i t , and an a d u l t s u r g i c a l ICU. One p a r t i c i p a n t (PI) had c r i t i c a l care n u r s i n g experience i n a p e d i a t r i c ICU and an a d u l t s u r g i c a l ICU. The l e v e l s of education f o r the p a r t i c i p a n t s i n c l u d e d 6 nu r s i n g diploma graduates and 2 n u r s i n g b a c c a l a u r e a t e graduates. Four of the p a r t i c i p a n t s had c e r t i f i c a t e s from formal c r i t i c a l care n u r s i n g t r a i n i n g programs. A l l e i g h t p a r t i c i p a n t s were female. E t h i c a l C o n s i d e r a t i o n s The i n v e s t i g a t o r sought approval through the U n i v e r s i t y of B r i t i s h Columbia B e h a v i o r a l Sciences Screening Committee f o r Research and Other S t u d i e s I n v o l v i n g Human Subjects, and the l o c a l chapter of the C.A.C.C.N, before i n i t i a t i n g t h i s study (see Appendix C). T h i s ensured methodological, a d m i n i s t r a t i v e , and p r o t e c t i o n of human r i g h t s c l e a r a n c e ( D i e r s , 1979). Once approval was granted, the i n v e s t i g a t o r a d v e r t i s e d fo r p a r t i c i p a n t s through the l o c a l C.A.C.C.N, (see Appendix A) and by r e f e r r a l through n u r s i n g a s s o c i a t e s . E t h i c a l c o n s i d e r a t i o n s a l s o i n v o l v e d each p a r t i c i p a n t ' s r i g h t to informed consent, and r i g h t to p r i v a c y ( D i e r s , 1979). T h e r e f o r e , nurses who responded 89 were given a l e t t e r of i n f o r m a t i o n d e s c r i b i n g the i n t e n t and design of the study (see Appendix B). The author c l a r i f i e d any questions and determined i f nurses wished to p a r t i c i p a t e d u r i n g an i n i t i a l meeting. Those agreeing to p a r t i c i p a t e were asked to sign a consent form (see Appendix B) before the f i r s t i n t e r v i e w . Nurses had the r i g h t to r e f u s e to p a r t i c i p a t e , the r i g h t to r e f u s e to answer any q u e s t i o n s , and the r i g h t to withdraw from the study at any time. C o n f i d e n t i a l i t y of r e s u l t s was maintained by coding the nurses' names f o r the purposes of the t r a n s c r i p t s , and nurses were asked not to mention names duri n g the i n t e r v i e w s . Any names a c c i d e n t l y mentioned were d e l e t e d from the t r a n s c r i p t . P u b l i s h e d and unpublished m a t e r i a l s do not i n c l u d e names of persons or i n s t i t u t i o n s . Data C o l l e c t i o n Within a phenomenological p e r s p e c t i v e , data c o n s i s t s of "experiences as shared and understood by the p a r t i c i p a n t s and the observer" ( R i s t , 1979, p. 20). T h i s meant that data c o l l e c t i o n f o r t h i s t h e s i s c o n s i s t e d of a s e r i e s of u n s t r u c t u r e d i n t e r v i e w s (see Appendix D f o r t r i g g e r q u e s t i o n s ) . I n i t i a l i n t e r v i e w s in phenomenological r e s e a r c h generate a broad scope of ideas and concepts, and one or two subsequent 90 i n t e r v i e w s are scheduled with p a r t i c i p a n t s to v a l i d a t e and expand on concepts a r i s i n g out of the i n t e r v i e w data (Anderson, 1981a, 1985; Anderson & Chung, 1982; Gl a s e r , 1978; Lindemann, 1974; Morse, 1986). A l l e i g h t p a r t i c i p a n t s had i n i t i a l i n t e r v i e w s that l a s t e d from 45 to 90 minutes to generate a broad scope of ideas and concepts. V a l i d a t i o n and expansion took p l a c e by sche d u l i n g second i n t e r v i e w s with seven p a r t i c i p a n t s (one p a r t i c i p a n t was no longer a v a i l a b l e ) , and t h i r d i n t e r v i e w s with three p a r t i c i p a n t s . Second and t h i r d rounds of i n t e r v i e w s a l s o l a s t e d 45 to 90 minutes. Given a process of concurrent c o l l e c t i o n and a n a l y s i s of data, data c o l l e c t i o n ceased when Morse's (1986) c r i t e r i a i n terms of the data being complete, making sense, and being confirmed were met. A t o t a l of 18 in t e r v i e w s were thus conducted over a six-month p e r i o d . The p a r t i c i p a n t s were o f f e r e d t h e i r c h o i c e i n terms of where the i n t e r v i e w s were to be conducted. Seven p a r t i c i p a n t s chose to be int e r v i e w e d i n the i n v e s t i g a t o r ' s home, and one p a r t i c i p a n t chose to be intervie w e d i n her employing agency. Permission was obtained from the h o s p i t a l a d m i n i s t r a t i o n b e f o r e conducting i n t e r v i e w s f o r the l a t t e r . Each i n t e r v i e w was audiotaped, with a typed t r a n s c r i p t made f o r purposes of a n a l y s i s . P a r t i c i p a n t s were t o l d t h a t they 9 1 would have access to t h e i r t r a n s c r i p t s and t h e s i s r e s u l t s upon request at the completion of the study. Data A n a l y s i s The i n t e n t of data a n a l y s i s w i t h i n phenomenology i s to move from the concrete towards the a b s t r a c t i n order to c o n s t r u c t an exhaustive d e s c r i p t i o n (Riemen, 1986). Data a n a l y s i s does not move towards the c o n s t r u c t i o n of a formal theory, but r a t h e r c o n s t r u c t s a d e s c r i p t i o n of how people i n t e r p r e t and give meaning to t h e i r s i t u a t i o n w i t h i n an i n t e r s u b j e c t i v e r e a l i t y (Anderson, 1981a & b; Anderson & Chung, 1982; Benner, 1985; Davis, A., 1973/1978; O i l e r , 1982; Ornery, 1983a; Reimen, 1986; R i s t , 1979). In order to analyse nurses' accounts and a r r i v e at an exhaustive d e s c r i p t i o n , the i n v e s t i g a t o r u t i l i z e d G i o r g i ' s (1975a) approach to phenomenological data a n a l y s i s . G i o r g i e x p l a i n s h i s approach as f o l l o w s : 1. The r e s e a r c h e r reads the e n t i r e d e s c r i p t i o n s t r a i g h t through to get some sense of the whole • • • • 2. The r e s e a r c h e r reads the same d e s c r i p t i o n more slow l y and d e l i n e a t e s each time that a t r a n s i t i o n in meaning i s p e r c e i v e d . . . [and] o b t a i n s a s e r i e s of meaning u n i t s or c o n s t i t u e n t s . . . . 3. The r e s e a r c h e r then e l i m i n a t e s redundancies, 92 but otherwise keeps a l l u n i t s . He then c l a r i f i e s or e l a b o r a t e s the meaning of the c o n s t i t u e n t s by r e l a t i n g them to each other and to the sense of the whole . . . . 4. The r e s e a r c h e r r e f l e c t s on the given c o n s t i t u e n t s , s t i l l expressed e s s e n t i a l l y i n the concrete language of the s u b j e c t , and transforms the meaning of each u n i t from the everyday naive language of the s u b j e c t i n t o the language of p s y c h o l o g i c a l s c i e n c e . . . . 5. The r e s e a r c h e r then s y n t h e s i z e s and i n t e g r a t e s the i n s i g h t s achieved i n t o a c o n s i s t e n t d e s c r i p t i o n . . . . (pp. 74-75). The process of a n a l y s i s i n t h i s t h e s i s i n v o l v e d a constant comparative a n a l y s i s ( G l a s e r , 1978; Lindemann, 1974) between the meaning u n i t s as presented by the p a r t i c i p a n t and c o n c e p t u a l i z e d by the i n v e s t i g a t o r . Interviews with p a r t i c i p a n t s t h e r e f o r e moved from open, r e f l e c t i v e l i s t e n i n g by the i n v e s t i g a t o r towards a process of c l a r i f i c a t i o n with p a r t i c i p a n t s to v a l i d a t e the i n v e s t i g a t o r ' s i n t e r p r e t a t i o n s . Constant comparative a n a l y s i s a l s o meant that the i n v e s t i g a t o r moved between the meaning u n i t s and the l i t e r a t u r e . Once the i n t e r v i e w i n g was completed, the author continued to r e t u r n to the l i t e r a t u r e to f u r t h e r 93 explore the i d e n t i f i e d meaning u n i t s . Moving from the concrete data of the i n i t i a l i n t e r v i e w s towards i n c r e a s i n g l y a b s t r a c t meaning u n i t s v a l i d a t e d by the p a r t i c i p a n t s and the l i t e r a t u r e r e s u l t e d i n the c o n s t r u c t i o n of an exhaustive d e s c r i p t i o n of c r i t i c a l care nurses' experiences n u r s i n g dying p a t i e n t s i n a c r i t i c a l care s e t t i n g . Chapter Four w i l l e xplore nurses' accounts of n u r s i n g dying p a t i e n t s i n a c r i t i c a l care s e t t i n g and w i l l i l l u s t r a t e the c o n s t r u c t i o n of the r e s u l t a n t d e s c r i p t i o n . 94 CHAPTER FOUR: PRESENTATION AND DISCUSSION OF ACCOUNTS I n t r o d u c t i o n T h i s s e c t i o n of Chapter Four w i l l present an i n t r o d u c t o r y d e s c r i p t i o n of the nurse p a r t i c i p a n t s ' e t h i c a l p e r s p e c t i v e s on n u r s i n g dying p a t i e n t s i n a c r i t i c a l care s e t t i n g . T h i s i n t r o d u c t i o n w i l l be b u i l t i n t o an exhaustive d e s c r i p t i o n through the i n t e r p r e t a t i o n and d i s c u s s i o n of accounts l a t e r i n t h i s c hapter. On the whole, nurses' e t h i c a l p e r s p e c t i v e s on nurs i n g dying p a t i e n t s i n a c r i t i c a l care s e t t i n g centered around a theme of s e n s e l e s s n e s s . Senselessness was d e s c r i b e d by nurses i n terms such as " f r u i t l e s s " , "going nowhere" and " s e l f - d e f e a t i n g " . Senselessness i l l u s t r a t e d the c o n f l i c t s experienced by nurses as they cared f o r p a t i e n t s undergoing p r o l o n g a t i o n of the process of dying, and was a s s o c i a t e d with f e e l i n g s of anger, f r u s t r a t i o n and powerlessness. The c o n f l i c t s experienced by nurses were comprised of m u l t i p l e e t h i c a l dilemmas, or c h o i c e s between e q u a l l y compelling or u n s a t i s f a c t o r y a l t e r n a t i v e s (Aroskar, 1980; Smith & Davis, 1980). These dilemmas thus c o n s t i t u t e d some of the concrete c o n f l i c t s a r i s i n g out of the o v e r a l l e t h i c a l problem of 95 p r o l o n g a t i o n of the process of dying ( C u r t i n , 1982a; J . E r i c k s e n , personal communication, June 12, 1987). More s p e c i f i c a l l y , nurses d e s c r i b e d the theme of senselessness i n terms of three major concerns. These concerns were: (a) a s e n s e l e s s decision-making process; (b) experiences of p a t i e n t s and f a m i l i e s t h a t were seen by nurses as s e n s e l e s s ; and (c) a c t i v i t i e s nurses found themselves i n v o l v e d i n to implement treatment regimes that were seen by nurses as s e n s e l e s s . Nurses' e t h i c a l p e r s p e c t i v e s on n u r s i n g dying p a t i e n t s i n a c r i t i c a l care s e t t i n g centered around a theme of s e n s e l e s s n e s s . However, nurses' e t h i c a l p e r s p e c t i v e s a l s o emphasized t h e i r attempts to cope with s e n s e l e s s n e s s . Coping with s e n s e l e s s n e s s was d e s c r i b e d by nurses i n terms of f i n d i n g new meanings. Given an understanding of meaning as the i n d i v i d u a l ' s personal i n t e r p r e t a t i o n of events and r e l a t i o n s h i p s which p r o v i d e s d i r e c t i o n f o r and i s d i r e c t e d by a c t i o n ( K e l l y , G. A., 1980; K l i n g e r , 1977; Shepherd & Watson, 1982), f i n d i n g new meanings provided nurses with new personal i n t e r p r e t a t i o n s that provided new d i r e c t i o n s f o r a c t i o n s . Thus, as nurses acted they r e f o r m u l a t e d t h e i r i n t e r p r e t a t i o n s , and so c o n s t r u c t e d f u r t h e r d i r e c t i o n s f o r a c t i o n . M i s h l e r (1979) reminds us that 96 any n o t i o n of meaning must be context-dependent. Nurses' personal i n t e r p r e t a t i o n s and d i r e c t i o n s f o r a c t i o n w i l l t h e r e f o r e be explored i n . t h i s Chapter w i t h i n the context of each nurse's unique e x p e r i e n c e s . F i n d i n g new meanings was d e s c r i b e d by nurses i n terms of s h i f t i n g focus, or s h i f t i n g t h e i r focus of a c t i o n . S h i f t i n g focus i n c l u d e d : (a) s h i f t i n g focus from the implementation of treatment regimes to p a t i e n t comfort; (b) s h i f t i n g focus to support of the f a m i l y ; and (c) s h i f t i n g focus to nurses' own p e r s o n a l p h i l o s o p h i e s . Nurses d e s c r i b e d t h e i r e t h i c a l p e r s p e c t i v e s as processes o c c u r r i n g over time, and s u b j e c t to a v a r i e t y of i n f l u e n c e s . I n f l u e n c e s i n c l u d e d such t h i n g s as peer support, the workload i n the p a t i e n t care s i t u a t i o n and the c u l t u r a l background of the p a t i e n t and f a m i l y . Nurses t h e r e f o r e experienced a c i r c u l a r process of e v o l v i n g meanings as they responded over time i n the context of a v a r i e t y of i n f l u e n c e s . In other words, nurses d i d not s h i f t focus and a r r i v e at a f i n i t e end-point of b e t t e r or worse, meaning. Rather, nurses' experiences were that they were c o n s t a n t l y e v o l v i n g new meanings that were q u a l i t a t i v e l y d i f f e r e n t from each o t h e r . The diagram i n Figure 1 summarizes the o v e r a l l process of nurses' e t h i c a l p e r s p e c t i v e s . 97 Figure 1: Nurses' E t h i c a l P e r s p e c t i v e s on Nursing Dying P a t i e n t s i n a C r i t i c a l Care S e t t i n g ETHICAL PERSPECTIVES CONCERNS INFLUENCES - A SENSELESS - Cultural background THEME OF DECISION- of the patient and MAKING PROCESS. family. SENSELESSNESS - Legal climate of the patient care - Conflicts situation. EjCniCaJL UlXeilttl laS • - EXPERIENCES OF - Context of the PATIENTS AND patient's l i f e FAMILY MEMBERS history. AS SENSELESS. - Nurses' own ident-ifi c a t i o n with that l i f e history. - NURSES' - Length of exposure ACTIVITIES AS of nurse to patients SENSELESS. experiencing pro-longation of the • process of dying. ETHICAL PERSPECTIVES SHIFTING FOCUS INFLUENCES - FOCUS ON - Nurses' use of COPING WITH PATIENT COMFORT. analgesia. - Nurses' i n a b i l i t y SENSELESSNESS to communicate with most of their - Finding new patients. meanings - FOCUS ON - Nurses' development J SUPPORT OF of increasing THE FAMILY. competence in their nursing practice. - Cultural background of the family. - Workload in the patient care situation. - Nurse's perceptions of support from others. EVOLVING - FOCUS ON - Amount of energy PERSONAL for self. MEANINGS PHILOSOPHY 98 C o n s t r u c t i o n of'Accounts The p r e v i o u s chapter d e s c r i b e d the process of data a n a l y s i s as a p r o g r e s s i o n moving from the concrete meaning u n i t s of p a r t i c i p a n t s towards more a b s t r a c t , d e s c r i p t i v e meaning u n i t s . T h i s was p a r a l l e l e d by an i n t e r v i e w i n g process that moved from open, r e f l e c t i v e l i s t e n i n g by the i n v e s t i g a t o r towards c l a r i f i c a t i o n and i n t e r p r e t a t i o n with the p a r t i c i p a n t s of the i d e n t i f i e d meaning u n i t s . I t i s the i n t e n t of t h i s s e c t i o n of Chapter Four to examine that i n t e r v i e w i n g ' p r o c e s s more s p e c i f i c a l l y i n terms of the process of c o n s t r u c t i o n of the p a r t i c i p a n t s ' accounts. The i n i t i a l i n t e r v i e w s with p a r t i c i p a n t s generated a broad scope of ideas, with p a r t i c i p a n t s speaking f r e e l y about t h e i r e t h i c a l p e r s p e c t i v e s on n u r s i n g dying p a t i e n t s i n a c r i t i c a l care u n i t . The f o l l o w i n g excerpt from an i n i t i a l i n t e r v i e w w i l l i l l u s t r a t e how each p a r t i c i p a n t began to f r e e l y d e s c r i b e her experiences from the o u tset of the f i r s t i n t e r v i e w . The i n v e s t i g a t o r ' s p a r t i c i p a t i o n c o n s i s t s of responses to promote an open d e s c r i p t i o n from the p a r t i c i p a n t : I : * There i s no one viewpoint that we ask people to r e p r e s e n t and what i t i s i s to j u s t get * I = i n v e s t i g a t o r 99 people to d e s c r i b e t h e i r f e e l i n g s and t h e i r i n t e r p r e t a t i o n s of d i f f e r e n t s i t u a t i o n s and through that then look at how that f i t s with e t h i c a l theory. But, d i d you want to ask anymore about that? P4:** No, I was b a s i c a l l y wondering how you were going to go about, l i k e do you ask c e r t a i n questions through the i n t e r v i e w and then you want me to respond, or you j u s t want me to . . . I: No. I t ' s j u s t very much f o r you to t a l k about what i t ' s l i k e to look a f t e r people who you b e l i e v e are dying and you're s t i l l pursuing treatment with them i n an i n t e n s i v e care u n i t . That's why t h i s methodology works w e l l because i f I ask you s p e c i f i c q u e s t i o n s i t would mean th a t I thought I knew what some of the qu e s t i o n s are. Do you f o l l o w what I mean? P4: Oh yeah, okay. . . . Yeah, w e l l I guess I f i n d t h a t ' s one of the b i g g e s t problems I f i n d working i n an I n t e n s i v e Care Unit i s a l o t of times there's no support from the upper echelons and the f a c t that we're l o o k i n g a f t e r a l o t of people that ** P = p a r t i c i p a n t 4 = p a r t i c i p a n t ' s i d e n t i f i c a t i o n number 100 are dying, and I think we're l o o k i n g a f t e r a l o t of people that are dying and I t h i n k i t ' s f r u i t l e s s and there's no support f o r the f a m i l y per se. When these people are dying t h e r e ' s no, I don't t h i n k that anybody i s being t o t a l l y honest with the f a m i l i e s . I f i n d I'm s t a r t i n g to do more so, t e l l them l i k e i t i s , even though I'm not supposed to be, I'm supposed to wait f o r the d o c t o r s to t e l l and t h i s i s the way i t i s . And that they aren't t o t a l l y o b l i v i o u s at how grim the p i c t u r e i s and I know and they have a f e e l i n g what's going on but they're not d e f i n i t e l y sure. I t ' s . . . some doct o r s are b e t t e r than o t h e r s and t h a t ' s what I f i n d f r u s t r a t i n g . . . . As can be seen, t h i s p a r t i c i p a n t immediately spoke of what was of most concern to her i n n u r s i n g dying p a t i e n t s i n a c r i t i c a l care u n i t . The r e s u l t a n t broad scope of ideas and concepts i n the f i r s t round of t r a n s c r i p t s was then analysed by the i n v e s t i g a t o r i n terms of concrete meaning u n i t s . These meaning u n i t s remained i n the language of the p a r t i c i p a n t . For example, in the t r a n s c r i p t above, meaning u n i t s such as "no support", "upper echelons", and " f r u i t l e s s " were drawn out by the i n v e s t i g a t o r to be f u r t h e r e x p l o r e d with the p a r t i c i p a n t i n a subsequent i n t e r v i e w . The second round of i n t e r v i e w s i n v o l v e d a process of c l a r i f i c a t i o n by the i n v e s t i g a t o r to v a l i d a t e the i n v e s t i g a t o r ' s understanding of the meaning u n i t s i d e n t i f i e d i n the f i r s t round. T h i s o f f e r e d p a r t i c i p a n t s the o p p o r t u n i t y f o r f u r t h e r c l a r i f i c a t i o n and e l a b o r a t i o n . The f o l l o w i n g excerpt from a second i n t e r v i e w w i l l i l l u s t r a t e the process of c l a r i f i c a t i o n between the i n v e s t i g a t o r and p a r t i c i p a n t : I: Okay, one of the t h i n g s that you s t a r t e d t a l k i n g about that I thi n k was a r e a l l y important word, was "s e n s e l e s s n e s s " and I ' l l j u s t s o r t of l e t you know i n what context as I go through t h i s so you can remember. You s a i d that one of your f e e l i n g s was that there was a l o t of se n s e l e s s n e s s with l o o k i n g a f t e r people i n c r i t i c a l care who weren't gonna go anywhere and that that was what everybody c a l l s "burnout", and I think the phrase you used was "whole rows of p a t i e n t s going nowhere", and I wondered i f you could e l a b o r a t e a l i t t l e b i t on what sens e l e s s n e s s means to you and whether that meant 'rows of p a t i e n t s going nowhere'? I f you could j u s t t a l k about that a l i t t l e b i t more. PI: I guess that the se n s e l e s s n e s s of the s o r t of endless treatment, but more than t h a t , the s o r t 102 of r e a l l a c k of q u a l i t y of l i f e f o r them, I t h i n k we a l l have a r e a l l y l i m i t e d l i f e span and I thin k that even i f you j u s t have one day to l i v e , f o r one more day, doesn't mean, that i t ' s s e n s e l e s s , i t ' s j u s t the q u a l i t y of that day. And I thin k that i f we s o r t of keep on g i v i n g the kind of care that renders no s o r t of i n t e r p e r s o n a l r e a c t i o n s , f o r in s t a n c e , the c h i l d r e n that I was t h i n k i n g of were the long-term v e n t i l a t e d c h i l d r e n who cou l d n ' t even be held by t h e i r parents or have any kind of s o c i a l i n t e r a c t i o n or anything, and there were many of them l i k e t h a t , that were, that j u s t c o u l d n ' t be handled or touched or have any kind of growth or any f e e l i n g or anything q u a l i t y to one, to any of t h e i r days, that r e a l l y seems, t h a t ' s what s o r t of r e a l l y bothers me. I: Ri g h t . So that i t was the i n t e r p e r s o n a l , the l a c k of i n t e r p e r s o n a l r e l a t i o n s h i p s which you f e l t meant that there was a l a c k of q u a l i t y of t h e i r l i f e ? PI: Yeah, and j u s t complete l a c k of any s o r t of sensory input or any enjoyment, you j u s t had to wonder, you know, what they were l y i n g there t h i n k i n g or f e e l i n g or, you know, and with no p a r t i c u l a r end i n s i g h t , . . . . 103 An important f e a t u r e of the process of c l a r i f i c a t i o n was that the p a r t i c i p a n t and i n v e s t i g a t o r c l a r i f i e d meaning u n i t s i n c o n t e x t . For example, i n the p r e v i o u s t r a n s c r i p t , as the i n v e s t i g a t o r sought to f u r t h e r develop an understanding of the meaning u n i t of "sens e l e s s n e s s " , she reminded the p a r t i c i p a n t that she spoke of i t i n r e l a t i o n to "rows of p a t i e n t s going nowhere" and "burnout". The second round of t r a n s c r i p t s thus continued what Schutz (1932/1967a; 1954/1967b) has c a l l e d an i n t e r s u b j e c t i v e c o n s t r u c t i o n of r e a l i t y . The i n v e s t i g a t o r ' s focus was to understand "the s u b j e c t i v e meaning of the a c t i o n s of human beings from which the s o c i a l r e a l i t y o r i g i n a t e s " (Schutz, 1954/1967b, p. 387). The process of data a n a l y s i s i n v o l v e d a constant comparative a n a l y s i s between the meaning u n i t s as presented by the p a r t i c i p a n t and c o n c e p t u a l i z e d by the i n v e s t i g a t o r . Constant comparative a n a l y s i s a l s o meant that the i n v e s t i g a t o r worked between the meaning u n i t s and the l i t e r a t u r e . Moving from the concrete meaning u n i t s towards a more a b s t r a c t d e s c r i p t i o n of c r i t i c a l care nurses' experiences n u r s i n g dying p a t i e n t s i n a c r i t i c a l care s e t t i n g n e c e s s i t a t e d a process of v a l i d a t i o n with p a r t i c i p a n t s . As the i n v e s t i g a t o r c o n s t r u c t e d a more a b s t r a c t d e s c r i p t i o n , she r e t u r n e d 104 to the i n t e r v i e w s to v a l i d a t e the e v o l v i n g d e s c r i p t i o n . T h i s v a l i d a t i o n took plac e d u r i n g a t h i r d i n t e r v i e w or at the end of a second i n t e r v i e w with p a r t i c i p a n t s . The f o l l o w i n g t r a n s c r i p t e x c e r p t s w i l l give examples of the process of v a l i d a t i o n : I: I think the o v e r a l l common thread that stands out, i f I was to s o r t of t i t l e the t h i n g . . . i s t h a t , as f a r as nurses' f e e l i n g s about what's going on with l o o k i n g a f t e r people who are dying i n c r i t i c a l c a re, that the way that they look at that or that they deal with that . . . i s to look at i t and b a s i c a l l y t r y and f i n d some meaning in i t , l i k e , what are those t h i n g s that w i l l be most important to them i n that s i t u a t i o n and t r y and f i n d a way of f i n d i n g some kind of p o s i t i v e meaning out of i t . And what i t ' s appearing i s that t h a t ' s not j u s t . . . t h i s i s what you see, t h i s i s what you de c i d e , that i t ' s probably a process that takes place over q u i t e a long p e r i o d of time as people are i n c r i t i c a l c a re, so that s o r t of c o n s t r u c t i o n of meaning or f i n d i n g some sense out of the whole t h i n g i s kind of the o v e r r i d i n g umbrella. Does t h a t , do you understand what I'm saying? P4: Yeah, i t h i t s the n a i l r i g h t on the head, 105 l i k e why am I doing t h i s ? Why am I doing i t ? Where are we going? Who's b e n e f i t t i n g ? I: How i s t h i s sounding so f a r , by the way, i s t h i s ? PI: Yeah, I t h i n k being able to c o n s t r u c t meaning, that sounds good . . . the s e n s e l e s s n e s s , and again, I t h i n k t h a t ' s probably one of the core t h i n g s that make us f e e l so awful about t h i n g s sometimes, a l l the s e n s e l e s s n e s s , i t i s , i t ' s a r e a l l y b i g f e a t u r e because I f e l t q u i t e s e n s e l e s s about what I'd done those two days and I thought gosh, I'm sure t h i s i s very hard to look a f t e r these people day i n and day out and I t h i n k that p a t i e n t s p a r t i c u l a r l y who are being weaned and you know t h e y ' l l come and say, Oh cut back on sedation, and don't give him too much and Oh-h-h! Give me a break! The process of v a l i d a t i o n i l l u s t r a t e d above i n v o l v e d the i n v e s t i g a t o r p r e s e n t i n g her d e s c r i p t i o n to the p a r t i c i p a n t s and seeking feedback on i t . In the process of v a l i d a t i o n , f u r t h e r c l a r i f i c a t i o n of meaning u n i t s o f t e n o c c u r r e d , f o r example P i ' s use of a recent c l i n i c a l i l l u s t r a t i o n i n terms of s e n s e l e s s n e s s . At times, the process of v a l i d a t i o n was s t r o n g e s t 106 with a p a r t i c i p a n t i n terms of a s e l e c t e d aspect of the d e s c r i p t i o n . The f o l l o w i n g t r a n s c r i p t excerpt i l l u s t r a t e s t h i s : I: [ r e : changing p e r s o n a l p h i l o s o p h y ] And th a t was very important to you, was i t , do you t h i n k , that p e r s o n a l philosophy? L i k e your face l i t up when I s a i d i t , I was wondering . . . P6: Oh no, I was j u s t , you know, as soon as you s a i d p e r s o n a l , how i t changes your p e r s o n a l philosophy I thought, wow, that r e a l l y d i d h i t the n a i l r i g h t on the head . . . Yeah, oh, e x a c t l y , i t r e a l l y does, because you see these poor people come in who are these, the best people, you know, r e a l l y good c o n t r i b u t o r s to s o c i e t y , good f a m i l y people, d i d n ' t d r i n k , d i d n ' t smoke, and then through no f a u l t of t h e i r own they'd end up, you know, they get h i t by a truck or they'd end up g e t t i n g some t e r r i b l e d i s e a s e and you j u s t never knew what was gonna happen to you. At other times, the process of v a l i d a t i o n r e q u i r e d changing the language of the d e s c r i p t i o n f o r the p a r t i c i p a n t s . The phrasing of the meaning u n i t s was not always the p a r t i c i p a n t ' s own, but once r e - i n t e r p r e t e d , rang true to t h e i r e x p e r i e n c e s . The next two t r a n s c r i p t s i l l u s t r a t e the process of 107 i n t e r p r e t a t i o n o f t e n i n v o l v e d i n v a l i d a t i o n of the exhaustive d e s c r i p t i o n : I: A l r i g h t , so what about the business of how your philosophy i s a f f e c t e d , s o r t of as you're d e a l i n g with t h i s . How's that f o r you? Would you . . . ? PI: Can you s o r t of re-phrase th a t ? I: One of the t h i n g s that i t seems i s t h a t not o n l y i s the task to s h i f t focus as to what you can do but a l s o to t h i n k about, you s t a r t to t h i n k about the world maybe i n a d i f f e r e n t way or you, and that that may be a p a r t of i t , and I t h i n k the way that you had phrased i t before was that you can be very p r i v i l e g e d to be with people at these times, that that p r i v i l e g e i n a sense, and I t h i n k what you meant was the l e a r n i n g that you can do. Did you mean that ? PI: Yeah. I: That that could be something p o s i t i v e . PI: Yeah, I think f o r myself, I've been exposed in d i f f e r e n t ways and probably at a f a i r l y formative age, i n my middle twenties which i s probably, I t h i n k age probably has an e f f e c t , when you're s o r t of l e a r n i n g those kind of t h i n g s , so I came i n with q u i t e decided ideas and p r e v i o u s f e e l i n g s and so, yes, i t was the r e , and I don't r e a l l y t h i n k i t r e a l l y developed i n the s i t u a t i o n but that was j u s t because of the way, i t wasn't my f i r s t exposure to dying people, so, but probably i f i t i s your f i r s t exposure, you would hope that people would see i t i n that l i g h t , and I t h i n k they do, I thi n k that good communication with r e l a t i o n s and being able to support them at that p o i n t i n time and being there can r e a l l y make you grow and, you know, develop your own phi l o s o p h y . I: And do you see that then as being p a r t of your o v e r a l l l i f e p hilosophy, not j u s t your philosophy of what happens at work? PI: Oh, I think very much so . . ., I thin k i t ' s c e r t a i n l y a f f e c t e d my whole s o r t of t h i n k i n g i n my whole l i f e p hilosophy when I was exposed to dying people and to the t h i n g s that happen to people along the way, I t h i n k , which i s i n t e r e s t i n g , you s o r t of wonder i f some people do j u s t see i t i n terms of working or whether they a c t u a l l y i n t e r n a l i z e i t . I: So from your experience you probably wouldn't have d e s c r i b e d i t that way, but are there t h i n g s that make sense from your own background i n 109 that d e s c r i p t i o n that I've given you i n terms of sensel e s s n e s s and coping with i t ? P8: Oh I thin k so, I t h i n k , w e l l from my experiences, I guess maybe I ' l l j u s t r e i t e r a t e what I s a i d b e f o r e , i s that coming i n and q u e s t i o n i n g what I'm doing, does that answer your question? Is Yeah, e x a c t l y , t h a t ' s a l l I need to know, . . . but i f you're saying that i t does f o l l o w some of what you've experienced t h a t ' s b a s i c a l l y what I need to know. P 8 : I thin k so, I haven't found, when you use the word s e n s e l e s s , I guess t h a t ' s , i n some cases, what I have been saying, i s t h a t , when I t a l k about there not being a purpose, when you can't c l e a r l y see the purpose. The p r e s e n t a t i o n of accounts to f o l l o w i n t h i s chapter w i l l o f f e r t r a n s c r i p t excerpts from p a r t i c i p a n t s ' accounts i n order t o ^ b u i l d an exhaustive d e s c r i p t i o n of nurses' e x p e r i e n c e s . Relevant l i t e r a t u r e from Chapter Two, as w e l l as a d d i t i o n a l t h e o r e t i c a l works, w i l l be i n c o r p o r a t e d i n a d i s c u s s i o n of the accounts. The i n v e s t i g a t o r w i l l r e t u r n to the i n i t i a l problem statement to draw some c o n c l u s i o n s at the commencement of Chapter F i v e . 110 I n t e r p r e t a t i o n and D i s c u s s i o n of Accounts  Theme o f Senselessness I n t r o d u c t i o n . Nurses' e t h i c a l p e r s p e c t i v e s on n u r s i n g dying p a t i e n t s i n a c r i t i c a l care s e t t i n g centered around a theme of s e n s e l e s s n e s s ; a theme that i l l u s t r a t e s the c o n f l i c t s , or e t h i c a l dilemmas, inherent i n the o v e r a l l e t h i c a l problem of p r o l o n g a t i o n of the process of d y i n g . Before e x p l o r i n g nurses' d e s c r i p t i o n s of t h e i r e t h i c a l dilemmas i n r e l a t i o n to s e n s e l e s s n e s s , i t w i l l be b e n e f i c i a l to f i r s t examine the nature of an e t h i c a l dilemma more c l o s e l y . C o n f l i c t s i n e t h i c a l dilemmas are o f t e n framed i n c o n f l i c t s between r i g h t s , d u t i e s , and o b l i g a t i o n s or between e t h i c a l p r i n c i p l e s (Aroskar, 1980; Smith & Davis, 1980). Rights have been d e f i n e d by Bandman and Bandman (1978) as "an i n d i s p e n s a b l y v a l u a b l e moral p o s s e s s i o n " that i s the b a s i s of d i g n i t y , r e s p e c t , and s e l f - r e s p e c t (p. 8). Examples o(f r i g h t s that are r e l e v a n t to nurses' experiences with p a t i e n t s undergoing p r o l o n g a t i o n of the process of dying i n c l u d e the r i g h t to s e l f - d e t e r m i n a t i o n , the r i g h t to be informed, the r i g h t to be f r e e from p a i n , and the r i g h t to d i e . "Rights imply corresponding d u t i e s on o t h e r s to enable r i g h t - h o l d e r s to e x e r c i s e t h e i r r i g h t s " (Bandman I l l & B a n d m a n , 1 9 7 8 , p . 8 ) . An e t h i c a l d u t y i s m a n d a t e d b y a n i n d i v i d u a l ' s r o l e , s t a t u s , o r p o s i t i o n , a n d i s o u t l i n e d i n t h e p r o f e s s i o n a l c o d e o f e t h i c s ( S m i t h & D a v i s , 1 9 8 0 , p . 1 4 6 5 ) . T h e r e f o r e , i n t e r m s o f t h e p a t i e n t ' s r i g h t t o d i e , n u r s e s a r e d i r e c t e d t o " f i n d new w a y s t o p r e s e r v e human v a l u e s , a u t o n o m y , a n d d i g n i t y " ( C a n a d i a n N u r s e s ' A s s o c i a t i o n , 1 9 8 5 , p . 7 ) . I t s h o u l d b e n o t e d t h a t e t h i c a l d u t i e s a r i s e f r o m t h e c o d e o f e t h i c s , a n d a r e n o t s p e c i f i e d i n c o d e s o f l a w ( S m i t h & D a v i s , p . 1 4 6 5 ) . An e t h i c a l o b l i g a t i o n a r i s e s w h e n : . . . o n e e s t a b l i s h e s a r e l a t i o n s h i p b a s e d o n a c o m m i t m e n t t h a t r e l a t e s t o a n e t h i c a l d u t y . A n u r s e i n c u r s a n e t h i c a l o b l i g a t i o n b y v i r t u e o f t h e r e l a t i o n s h i p f o r m e d w i t h t h e p a t i e n t , t h e i n s t i t u t i o n , a n d o t h e r h e a l t h c a r e p r o f e s s i o n a l s a n d , p e r h a p s , t h e p a t i e n t s ' f a m i l y a n d f r i e n d s a n d s o c i e t y ( S m i t h & D a v i s , 1 9 8 0 , p . 1 4 6 5 ) . F o r e x a m p l e , a n e t h i c a l o b l i g a t i o n i n r e l a t i o n t o p r o l o n g a t i o n o f t h e p r o c e s s o f d y i n g w o u l d a r i s e w h e n a p a t i e n t ' s f a m i l y a p p r o a c h a n u r s e t o s a y t h a t t h e y c a n n o t u n d e r s t a n d why t h e i r f a m i l y member i s s h o w i n g n o i m p r o v e m e n t . T h e n u r s e w o u l d h a v e a n e t h i c a l o b l i g a t i o n t o a s s i s t t h e f a m i l y m e m b e r s t o a p p r o a c h t h e p h y s i c i a n f o r m o r e i n f o r m a t i o n . 112 F i n a l l y , e t h i c a l p r i n c i p l e s may be viewed "as governing laws of conduct, as codes of conduct by which one d i r e c t s one's l i f e or actions, or as generalizations that provide a basis for reasoning" (Davis & Aroskar, 1983, p. 40). Three major e t h i c a l p r i n c i p l e s that are p a r t i c u l a r l y relevant to nurses' accounts in th i s Chapter include autonomy, beneficience, and justice (Beauchamp, 1982a). Autonomy, also known as respect for persons, d i r e c t s us to see persons as unconditionally worthy agents with a capacity for ra t i o n a l choice (Beauchamp, p. 26). Beneficience d i r e c t s us to "abstain from injuring others and to help others further their important and legitimate i n t e r e s t s , largely by preventing or removing possible harms" (Beauchamp, p. 28). Justice d i r e c t s us to give another "what he or she i s due or owed, what he or she deserves or can legitimately claim" (Beauchamp, p. 30). More s p e c i f i c a l l y , d i s t r i b u t i v e j u s t i c e "refers to the proper d i s t r i b u t i o n of s o c i a l benefits and burdens" (Beauchamp, p. 30). An i l l u s t r a t i o n of how these p r i n c i p l e s might operate in terms of a prolongation of the process of dying s i t u a t i o n would be a nurse's desire to respect the choice of a patient's refusal of surgery (autonomy), but her concerns that the patient w i l l suffer increasing pain without the 113 surgery ( b e n e f i c i e n c e ) , and her knowledge that i f the p a t i e n t chooses to go to surgery, other emergency s u r g e r i e s w i l l be delayed ( j u s t i c e ) . As can be seen from the i l l u s t r a t i o n , e t h i c a l p r i n c i p l e s o f t e n c o n f l i c t with each other to c r e a t e an e t h i c a l dilemma. As the theme of sense l e s s n e s s i s explored v i a nurses' accounts, the i n v e s t i g a t o r w i l l uncover some of the e t h i c a l dilemmas inherent i n the nurses' p e r s p e c t i v e s . In other words, the i n v e s t i g a t o r w i l l i l l u s t r a t e some of the c o n f l i c t s between r i g h t s , d u t i e s , and o b l i g a t i o n s or between e t h i c a l p r i n c i p l e s inherent i n nurses' concerns. A Senseless Decision-Making Process. Nurses' e t h i c a l p e r s p e c t i v e s of se n s e l e s s n e s s were d e s c r i b e d as o r i g i n a t i n g i n a decision-making process that they viewed as s e n s e l e s s . T h i s was a concern that was emphasized r e p e a t e d l y through the t r a n s c r i p t s with every p a r t i c i p a n t , and was d e s c r i b e d i n terms of the process by which d e c i s i o n s were made. Inadequate involvement of the p a t i e n t , inadequate involvement of the f a m i l y , inadequate involvement of the nurse, and fragmentary team decision-making were a l l p a r t of nurses' e t h i c a l p e r s p e c t i v e s of a s e n s e l e s s decision-making p r o c e s s . The f o l l o w i n g t r a n s c r i p t e x c e r p t s i l l u s t r a t e 114 nurses' e t h i c a l p e r s p e c t i v e s of s e n s e l e s s decision-making process i n terms of inadequate involvement of the p a t i e n t : P2: We had a l i t t l e o l d lady that I found r e a l l y d i f f i c u l t to look a f t e r , she was a r e a l sweetheart, . . . but she was c h r o n i c lung, smoked a l l her l i f e and I mean she was l i k e seventy, almost e i g h t y , and was trached and I mean you take her o f f and T-piece [a weaning mode] f o r f i v e minutes or whatever and she'd go b l u e . But we continued on to v e n t i l a t e t h i s lady, we continued on with her treatment, yet i f she got an i n f e c t i o n we wouldn't t r e a t i t , and so that took three months, with her on the v e n t i l a t o r and l i v i n g through h e l l , and her t r y i n g to p u l l her t r a c h out because she wanted to d i e . I: Did she t e l l you she wanted to d i e ? P2: Yes. And we continued on. But everybody f i g u r e d she was o l d and her CC^ W a s up and she d i d n ' t know what she was t a l k i n g about so we would continue on. I: So she was con s i d e r e d not competent because > of her CO--? P2: Right, yeah. P4: One of the b i g g e s t ones that we have a hard 115 time d e a l i n g with i n ICU i s the leukemic p a t i e n t s , bone marrow t r a n s p l a n t s , and acute and mild leukemia, and not one of them has ever made i t out of ICU, once they come to ICU they never make i t out. And we get the a t t i t u d e , oh s h i t , another leukemic's coming i n . But i t ' s only because we know that i t ' s f r u s t r a t i n g , the fami l y ' s down there and they are used to have so much support up on [the ward] and they have gone through the stage and a l l of a sudden they end up i n ICU, but they're not t o l d when they go through a l l t h i s treatment, you know, once they get g r a f t vs. host, that i f they end up i n ICU that they're not going to make i t out. . . . A l l of a sudden you see these p a t i e n t s that come down and they're with i t when they come down, they know what's going on and they're never consulted as f a r as I can see. I t ' s always when i t ' s too l a t e , when they're intubated and v e n t i l a t e d and you've got them so sedated that they can't make a d e c i s i o n themselves and i t ' s up to the famil y to make a d e c i s i o n . P5: See, cuz t h i s man d i d choose to have no r e s u s c i t a t i o n . I : Oh, d i d he? 116 P 5 : Yeah. And we're d o i n g i t s t r i c t l y f o r the f a m i l y and we c a n ' t t a k e h i s d e c i s i o n as the f i n a l , t h i s i s i t , he's chose t h a t , Oh, we're not g o i n g t o i n t u b a t e him or a n y t h i n g , you know, cuz he a r r e s t e d on the f l o o r and t h a t was i t , and he knew h i s . chances of s u r v i v a l once a d m i t t e d t o the h o s p i t a l were m a r g i n a l and he d i d n ' t want a n y t h i n g t o be done, you know, and u n f o r t u n a t e l y i t was done. But I mean you c a n ' t r e l y on t h a t , you don't know how the man was f e e l i n g a t the time o r , you know. I: So the whole q u e s t i o n o f whether he was competent t o say t h a t , t h a t ' s a n o ther problem? P 5 : Yeah. So i t ' s a r e a l l y i n d i v i d u a l t h i n g t h a t you're d e a l i n g w i t h . . . As can be seen from the p r e v i o u s t r a n s c r i p t s , p a t i e n t p a r t i c i p a t i o n i n d e c i s i o n s r e g a r d i n g the d i s c o n t i n u a t i o n of t r e a t m e n t was d e s c r i b e d as not t a k i n g p l a c e , f r e q u e n t l y because of presumptions o f p a t i e n t incompetence. The f i r s t t r a n s c r i p t i l l u s t r a t e s t h a t n u r s e s d i d not always agree t h a t the p a t i e n t was incompetent; a c o n f l i c t between the p a t i e n t ' s r i g h t t o s e l f - d e t e r m i n a t i o n and the n u r s e s ' o b l i g a t i o n t o f o l l o w the p h y s i c i a n s o r d e r s . The t h i r d t r a n s c r i p t r e a f f i r m s the d i f f i c u l t i e s i n d e t e r m i n i n g a c r i t i c a l l y i l l p a t i e n t ' s competence d e s c r i b e d i n Chapter Two ( C a s s e l l , 117 1986; Youngner, 1986). I t i s i n t e r e s t i n g to note that a recent f i e l d - w o r k study of decision-making w i t h i n the h e a l t h care system has noted an o v e r a l l l a c k of p a t i e n t p a r t i c i p a t i o n (Degner & Beaton, 1987). Within t h i s t h e s i s , l a c k of p a t i e n t p a r t i c i p a t i o n i n decision-making was seen by nurses as c o n t r i b u t i n g to a s e n s e l e s s decision-making p r o c e s s . Inadequate involvement of the f a m i l y i n decision-making was a major focus of nurses' d e s c r i p t i o n s . The f o l l o w i n g t r a n s c r i p t s i l l u s t r a t e nurses' p e r s p e c t i v e s of inadequate involvement of f a m i l y members: P 5 : Well I j u s t , sometimes I f e e l t h a t the f a m i l y members don't get a l l the i n f o r m a t i o n , whether, and I thin k when you're c o n s u l t i n g a l o t of s e r v i c e s and say they're i n f o r t h e i r T r i p l e A [Abdominal-Aortic-Aneurysm] r e p a i r but somehow they end up becoming obtunded and you don't know why, and neuro comes i n to see them and a l l of a sudden now they've got some s o r t of blood d y s c r a s i a and hematology i s i n to see them and I think the f a m i l y has a r i g h t to know what i s going on - the t o t a l p i c t u r e , you know, the t o t a l c are, not j u s t , you know, the T r i p l e A has been f i x e d but now i t ' s 118 something e l s e , you know, t h a t ' s k i l l i n g the p a t i e n t . And I think a l o t of f a m i l y members w i l l t a l k j u s t to [the p h y s i c i a n ] and say, "Yeah, w e l l , you know, we've done e v e r y t h i n g we can" and t h i s and t h a t , and I mean, i t ' s t r u e , we have done ev e r y t h i n g we can, but I s t i l l f e e l t h a t f a m i l y members should ask, "Well, we'd l i k e to speak with the I n f e c t i o u s Disease's people, we'd l i k e to speak with the n e u r o l o g i s t that has come i n to see him." Sometimes I f i n d that hard because t h e r e ' s so many s e r v i c e s that have come i n . . . I: That the f a m i l y never get the f u l l p i c t u r e ? P 5 : That the f a m i l y never get the f u l l p i c t u r e , you know, as I say they come i n f o r the T r i p l e A and the T r i p l e A i s r e p a i r e d so they don't understand why the p a t i e n t i s now dying because he was here f o r h i s aneurysm but now you say i t ' s r e p a i r e d , you know, now why i s he dying, s o r t o f , why ? P 2 : . . . or f a m i l y members who have s a i d , "We've d i s c u s s e d t h i s and because, you know, they're 85 years o l d , or 80 years o l d , or whatever, and that i f i t ever came to the po i n t where he'd have to be on a v e n t i l a t o r we've d i s c u s s e d i t and 119 we d o n ' t w a n t i t t o b e t h a t w a y . " A n d t h e n t h e m b e i n g t a l k e d o u t o f i t . I : R i g h t , I t h i n k I u n d e r s t a n d w h a t y o u mean b y [ t h a t ] b u t c a n y o u t a l k m o r e a b o u t w h a t u s u a l l y h a p p e n e d , w a s i t t h e p h y s i c i a n s t a l k e d t h e m o u t o f i t o r ? P2: Y e a h , u s u a l l y , o r t h e y m a y b e b e l i t t l e d t h i n g s a n d s a i d , W e l l t h i s w i l l j u s t b e f o r a l i t t l e w h i l e , o r maybe i t ' s m a y b e t h e y t e l l t h e m t h e t r u t h b u t t h e p e o p l e d o n ' t , w h a t t h e d o c t o r ' s s a y i n g a n d w h a t t h e p e o p l e a r e h e a r i n g a r e n ' t t h e same t h i n g . I : So t h e r e ' s a l a c k o f c l a r i f i c a t i o n ? P2: Y e a h , a n d s o t h e y , t h e y d o n ' t c l a r i f y w h a t e a c h o t h e r ' s s a y i n g a n d w h a t o t h e r p e o p l e t h i n k . I r e m e m b e r o n e O r i e n t a l l a d y t h a t we h a d t h a t , s h e h a d t o h a v e a l o b e c t o m y d o n e a n d t h e y t o l d h e r i t w o u l d j u s t b e a t i n y l i t t l e c u t a n d w o o - o f . I : So i t ' s n o t j u s t t h a t t h e y d o n ' t u n d e r s t a n d , b u t i t ' s a l s o how t h e i n f o r m a t i o n i s p r e s e n t e d ? P2: Y e a h , a n d s o , y o u k n o w , w h a t e v e r t h e d o c t o r r e a l l y s a i d , b u t t h i s i s w h a t t h e f a m i l y u n d e r s t o o d , w a s t h a t t h e r e w a s j u s t g o i n g t o b e a l i t t l e c u t a n d t h e y ' d t a k e o u t t h i s p i e c e o f l u n g a n d s h e ' d b e f i n e . W e l l , s h e w a s v e n t i l a t e d a n d 120 f o r I thin k i t was something l i k e three months • • • Nurse's d e s c r i p t i o n s of inadequate f a m i l y involvement i n decision-making f r e q u e n t l y centered on p a r t i a l , p o o r l y presented, or misunderstood i n f o r m a t i o n ; a v i o l a t i o n of the f a m i l y ' s r i g h t to be informed. As was i l l u s t r a t e d i n the f i r s t t r a n s c r i p t , f a m i l y members were p e r c e i v e d by nurses as being bewildered by the l a c k of a comprehensive p i c t u r e of what was happening to t h e i r loved one, o f t e n because of the v a r i e t y of medical s e r v i c e s i n v o l v e d i n the p a t i e n t ' s c a r e . In a foreword to the study c i t e d e a r l i e r by Degner and Beaton (1987), Glass (1987) s t a t e s that the " d i f f u s i o n of e x p e r t i s e stemming from s p e c i a l i z a t i o n and l a y e r e d c o n s u l t a t i o n l e a v e s consumers of h e a l t h care confused and seldom i n c o n t r o l of the d e c i s i o n s which a f f e c t t h e i r d e s t i n y " (p. 3-4). P a t i e n t s and f a m i l y members were d e s c r i b e d by nurses i n t h i s t h e s i s as confused and l a c k i n g c o n t r o l i n d e c i s i o n s to withdraw treatment. The p r e s e n t a t i o n and d i s c u s s i o n of accounts has i n d i c a t e d that nurses expressed concern that p a t i e n t s and f a m i l i e s o f t e n l a c k e d i n f o r m a t i o n to make d e c i s i o n s to withdraw e x t r a o r d i n a r y treatment measures. There was a l s o concern expressed d u r i n g one i n t e r v i e w that 121 f a m i l y members might have been pressured i n t o making d e c i s i o n s to withdraw treatment when they were not ready. A c o n t i n u a t i o n of the t r a n s c r i p t c i t e d e a r l i e r with P5 presents t h i s concern: I s And y e t , even with that l a c k of understanding [the f a m i l y i s ] i n a p o s i t i o n where they may be d e c i d i n g that they don't want to c a r r y on. Is your concern that that may bother them l a t e r or ? P 5 : I t h i n k so, cuz I t h i n k a l o t of people look at the p a t i e n t and say, "Oh-h, we don't want any treatment i n i t i a t e d or any treatment s t a r t e d , l e t ' s j u s t l e t her pass away, or whatnot, and I t h i n k a l o t of f a m i l i e s may f e e l , not coerced i n t o t h e i r d e c i s i o n , but hastened i n t o t h e i r d e c i s i o n , because i t ' s one, and I hate to say that they're not i n need f o r a bed, but i t ' s s o r t of . . . I s There can be a c e r t a i n amount of pressure? P 5 : Yeah, and I t h i n k , you know, and even i f given the chance t h i s p a t i e n t would probably pass away w i t h i n the week, but I mean you've seen something t h a t ' s come out, you know, and t h i s p a t i e n t has turned up and gotten b e t t e r and l e f t the u n i t , and t o t a l l y s u r v i v e d . I s Although even given that i t ' s not so much 122 the f a c t that he's going to d i e , i t ' s how the d e c i s i o n i s made that you're concerned about? P5: Yeah, and I thin k they say, l i k e on F r i d a y they're given that d e c i s i o n and t h e y ' l l say, "Okay, we l l l e t us thin k about i t on the week-end", or "Family members are coming i n from C i t y A", and t h i s and t h i s , and a l l of a sudden t h e r e ' s a new [ p h y s i c i a n ] on Monday morning and he or she, . . . has no idea what's t r a n s p i r e d on F r i d a y , or how t h i s f a m i l y member has been approached on asking, you know, should we continue on with treatment, and I think there should be some c o n s i s t e n c y . . . . And I t h i n k , you know, because they j u s t , as I s a i d , they o n l y get say, you know, they're there f o r t h e i r T r i p l e A and t h a t ' s r e p a i r e d and he's r e p a i r e d i t and now a l l of a sudden they're dying because they're DIC [Disseminated I n t r a v a s c u l a r Coagulation] so that hematology's the r e , so you know, l a t e r they're going to go home and say, "Well, I d i d n ' t get the f u l l p i c t u r e , I know that the aneurysm was r e p a i r e d but could the DIC be f i x e d , I d i d n ' t t a l k to anybody about t h a t " , but then t h e r e ' s a l o t of people who don't know th e r e ' s d i f f e r e n t s e r v i c e s , they th i n k that one doctor takes care of 123 e v e r y t h i n g , and sometimes I thin k i t ' s unfortunate that a member of the f a m i l y i s not given that c h o ice to t a l k with everybody, or you t r y to get them to meet and i t ' s j u s t . . . I s So the element of choice and f u l l i n f o r m a t i o n ' s r e a l l y important i n that to you? P 5 : Yeah, I think so, you know, i n order f o r that f a m i l y member to b e l i e v e i n themselves that they made the r i g h t d e c i s i o n or, you know, i t would be an awful d e c i s i o n to make knowing i n 2 years time t h a t , "Well, you know, maybe I should have t a l k e d to a hematologist or something", and th e r e ' s a l o t that don't know that t h e r e ' s so many s e r v i c e s . The excerpt from P5 i l l u s t r a t e s that nurses' concerns were not about the d e c i s i o n s per se, but r a t h e r about what they c o n s i d e r e d as a s e n s e l e s s decision-making p r o c e s s . T h i s t r a n s c r i p t p a r a l l e l s concerns expressed by p a r t i c i p a n t s i n Fenton*s (1987) study that the process of withdrawal of treatment measures v i o l a t e d p a t i e n t and f a m i l y ' s r i g h t s to be informed and make informed c h o i c e s i n t h e i r c a r e . A f u r t h e r dimension of a s e n s e l e s s decision-making process i n terms of f a m i l y involvement was expressed by nurses who s t a t e d that the f a m i l y was not always able 124 to represent the best i n t e r e s t s of the p a t i e n t . The f o l l o w i n g t r a n s c r i p t p r o v i d e s an example: P 5 : I t r e a l l y bothers me, t h i s , you know, we had a 96 year o l d come i n and they wanted f u l l treatment and of course she was int u b a t e d and the whole b i t , at 96, and I j u s t t h i n k t h e r e ' s a p o i n t in time when a f a m i l y member has to r e a l i z e t h a t , you know, at 96, or 82, or 88, I mean I don't know where to draw the l i n e , you can't, w e l l , i f you're over 75, w e l l , t h a t ' s i t , the d e c i s i o n ' s made, you've g o t t a , i t ' s your time to go, and I j u s t think that f a m i l y members should be aware of what that p a t i e n t i s going through f o r t h e i r own f e e l i n g s . I: For the f a m i l y members' f e e l i n g s ? P 5 : For the f a m i l y members' f e e l i n g s . You're now d e a l i n g with t h e i r c h o ice to make t h a t , to give that c a r e , and that p a t i e n t has no say, they c o u l d be completely b l o t t o , but i t ' s the f a m i l y members that are asking to give a l l t h i s care and I'd j u s t l i k e them to be made aware, look t h i s i s what we're doing to your mother, you know, we're s u b j e c t i n g her to t h i s t e s t , we're s u b j e c t i n g her to t h i s t e s t , and t h i s t e s t , and t h i s t e s t , o n l y to f i n d out t h a t , you know, I mean, that she's o l d and her 125 time has come, you know. Nurses' p e r s p e c t i v e s i n d i c a t e d that f a m i l y members were sometimes unable to r e p r e s e n t the best i n t e r e s t s of the p a t i e n t because of l a c k of i n f o r m a t i o n and l a c k of understanding. Nurses thus experienced a c o n f l i c t between t h e i r duty to preserve the d i g n i t y of t h e i r p a t i e n t s and t h e i r o b l i g a t i o n to r e s p e c t f a m i l y members' d e c i s i o n s . Family members were a l s o seen to be confused by t h e i r l a c k of understanding of the i n f o r m a t i o n presented to them as w e l l as by the ambivalent a c t i o n s of the h e a l t h care team members. To i l l u s t r a t e : P7: . . . f i n a l l y we s a i d that t h e r e ' s nothing more we c o u l d do, we had a f a m i l y conference, and there was nothing more we c o u l d do with him, and I was i n v o l v e d with t h a t , and hematology was there and they s a i d , you know, i t ' s time f o r us to l e t him go, and .that, the f a m i l y d i d n ' t say a word and then they asked completely afterwards, you know, l i k e "Well when are you gonna do h i s bloodwork?" and when are you gonna do s t u f f l i k e t h i s ? And we s a i d , "Well you were j u s t i n the meeting, we're not gonna take bloodwork anymore", l i k e t h i s i s how i f a p a t i e n t , what they p r e f e r to do which i s a c t u a l l y i s p r e t t y , they won't turn somebody o f f , i f t h e r e ' s 126 nothing you can do, they won't turn them o f f , they won't even put them from 90% to 21% [oxygen] to j u s t b a s i c a l l y k i l l them q u i c k l y , p a i n l e s s l y , j u s t woomp, they're gone, they won't do t h a t , they leave e v e r y t h i n g as i s , they won't add anymore i n o t r o p e s to them, they won't do any blood work, so t h e r e f o r e they don't have any bad, the d o c t o r s don't have any bad c o n s c i e n c e s , but th e r e ' s nothing they have to orde r . So i t ' s l i k e the d o c t o r s are a l l of a sudden put i n t h i s g u i l t f r e e zone because . . . Is They have no i n f o r m a t i o n coming to them. P7: There's nothing s i t t i n g here, I can't t r e a t anything, you know, and here you've been b o l t i n g t h i s k i d with potassium on and on and on and you knew that he was e v e n t u a l l y going to i n f a r c t from a l l that potassium. They wouldn't stop any of the a n t i b i o t i c s , they don't s t a r t any i n o t r o p e s , they j u s t leave e v e r y t h i n g as i s , so here's t h i s k i d on an a s s i s t c o n t r o l of 40, p i e c e of 15, 90% oxygen, you know you're b a s i c a l l y b e a t i n g him to death. We're not doing any bloodwork so of course h i s p l a t e l e t s , he's e a t i n g up p l a t e l e t s so you know that you're j u s t , with each breath we weren't gonna do any chest tubes i f he blew a [pneumorthax ], l i k e nothing, l i k e b a s i c a l l y you were j u s t , seems to me 127 l i k e the most d i s g u s t i n g way to k i l l somebody, you know, you s t i l l c o u l d give him s e d a t i o n and s t u f f l i k e that but you're not . . . I : Must f e e l l i k e a very grey zone to be i n . P 7 : Oh, i t ' s h o r r i b l e . And e s p e c i a l l y when the f a m i l y can't accept i t , when the f a m i l y wants you to do t h i n g s even though they know th e r e ' s nothing you can do, they want . . . I s And they s t i l l see him on the v e n t i l a t o r and s t u f f ? P7: That's r i g h t . In the t r a n s c r i p t excerpt from P7, ambivalent a c t i o n s of the h e a l t h care team members such as not stopping v e n t i l a t i o n and a n t i b i o t i c s but not adding i n o t r o p e s fo r a f a l l i n g blood pressure were seen to f u r t h e r confuse f a m i l y members. The l i t e r a t u r e review i n Chapter Two of t h i s t h e s i s i n d i c a t e d that proxy decision-making of f a m i l y members for treatment abatement r e q u i r e s informed, shared decision-making that i s i n the best i n t e r e s t s of the p a t i e n t ( C u r t i n , 1982c). Nurses' experiences as rep o r t e d i n t h i s study were that proxy decision-making was f r e q u e n t l y not informed, not shared, and not always in the best i n t e r e s t s of the p a t i e n t . Inadequate involvement of the nurse i n the 128 decision-making process was almost unanimously c i t e d by p a r t i c i p a n t s i n t h i s study. The pre v i o u s t r a n s c r i p t excerpt from P7 i m p l i e s that she had no input i n t o a d e c i s i o n that put the do c t o r s " i n t h i s g u i l t f r e e zone". To f u r t h e r i l l u s t r a t e : P i : I thin k the one p a r t i c u l a r c h i l d t h a t a l o t of the s t a f f f e l t very angry towards the medical s t a f f , . . . was that i t seemed that they weren't able to get a r e a l l y c l e a r p i c t u r e of what was, you know, of what the e t h i c a l s i t u a t i o n was, and the e t h i c s committee was v a c i l l a t i n g about what to do with t h i s c h i l d , whether they should take him o f f the v e n t i l a t o r , and there were a l s o f a m i l y problems a s s o c i a t e d with i t , and I guess as a bedside nurse you never r e a l l y got to hear, i t was j u s t s o r t of c o f f e e room t a l k or whatever, but you know we never r e a l l y got an idea of e x a c t l y why we had to keep l o o k i n g a f t e r t h i s c h i l d and why they c o u l d n ' t make t h i s d e c i s i o n . And I thin k i t r e a l l y would have helped us to know, I thin k i t r e a l l y would have helped i f the [ p h y s i c i a n ] had you know come to the nurses and s a i d , "I thin k t h i s and t h i s i s what's going on", because nothing was r e a l l y w r i t t e n i n the c h a r t and I thin k that i f you have that kind of in f o r m a t i o n , i t ' s e a s i e r to de a l with i t . 129 P4: That's another t h i n g , about f i n d i n g out about where we're going with the treatment, I f i n d a l o t of times, one t h i n g I wanted to mention i s that a l o t of times we don't, we're not i n v o l v e d unless we ask. Li k e they've gone o f f and t a l k e d to the f a m i l y , then you don't see them f o r two hours, I don't know what the h e l l they've t o l d them, unless I ask the f a m i l y , and a l o t of times they're too upset to t a l k about i t or they don't, i t doesn't q u i t e sink i n because they are so s t r e s s e d out. And I think there should be more communication with the medical s t a f f and the nurses. Anger and f r u s t r a t i o n with the p h y s i c i a n s were emotions f r e q u e n t l y r e p o r t e d by the p a r t i c i p a n t s , and probably r e f l e c t e d nurses' f e e l i n g s of powerlessness. The powerlessness of nurses as decision-makers i n h e a l t h care has long been re c o g n i z e d , and probably r e f l e c t s the s t r o n g l y entrenched s o c i a l s t a t u s d i f f e r e n c e s between p h y s i c i a n s and nurses (Ashley, 1976; Engelhardt, 1985; M i l l a r , 1981). Nurses were l e f t to deal with what they saw as d e c i s i o n s p o o r l y made by p h y s i c i a n s , which p l a c e d them i n a c o n f l i c t between t h e i r d u t i e s to the p a t i e n t and f a m i l y and t h e i r o b l i g a t i o n s to the p h y s i c i a n and the i n s t i t u t i o n . 130 Despite nurses' f e e l i n g s of powerlessness, there was some acknowledgement that the p h y s i c i a n s themselves d i d not f i n d the decision-making process easy. For example: P2: So I, sometimes I thin k we as nurses, i t ' s easy f o r us to say, they should never keep t h i s person a l i v e , why are we doing t h i s , but i t ' s , I think we'd f e e l a l o t d i f f e r e n t i f i t was a c t u a l l y our d e c i s i o n to make because i t r e a l l y i s very nebulous and t h e r e ' s no c l e a r - c u t answers, t h e r e ' s nothing, i t ' s something t h a t ' s very i n d i v i d u a l and you have to t a l k with a l l p a r t i e s and know a l l p a r t i e s i n v o l v e d before you can make any kinds of those d e c i s i o n s and i t ' s easy f o r us to say when we're not the ones who are r e s p o n s i b l e , but i t ' s a l s o f r u s t r a t i n g that we have so l i t t l e input i n t o what happens. Is So th e r e ' s two s i d e s of t h a t , i t makes i t e a s i e r but i t a l s o makes i t more f r u s t r a t i n g ? P2: Yeah. P3: And I thin k t h a t ' s r e a l l y hard when a l o t of people, when the nurses, and s t a f f , I mean you know a l l the medical s t a f f , t h i n k gee the chances are p r e t t y rough, t h e r e ' s a s l i m chance, I mean we do 131 have to go forward. I t happens a l o t I t h i n k . But ther e ' s r e a l l y no c h o i c e , I suppose the p a t i e n t i s , I t h i n k what I o f t e n say to people i n that s i t u a t i o n where i t ' s been a long time i s that j u s t t e l l i n g them i t ' s awful w a i t i n g , we're j u s t w a i t i n g and i t ' s r e a l l y hard. Nurses' e t h i c a l p e r s p e c t i v e s were that they were o f t e n not i n v o l v e d i n the decision-making process i n terms of treatment abatement. T h i s u s u a l l y r e s u l t e d i n f e e l i n g s of anger and f r u s t r a t i o n with p h y s i c i a n s . Some p a r t i c i p a n t s tempered t h e i r f e e l i n g s with the acknowledgement that the p h y s i c i a n s were attempting to make d e c i s i o n s i n 'grey areas' of p r o b a b i l i t i e s . As was d i s c u s s e d i n Chapter One, these 'grey areas' are probably r e f l e c t i v e of the c u r r e n t u n c e r t a i n t y i n the medical community as to establishment of c r i t e r i a f o r the a p p l i c a t i o n of technology ( C a s s e l l , 1986; E l o v i t z , 1981; Fineberg & H i a t t , 1979; Jackson, 1984; R u s s e l l , 1983; T h i b a u l t et a l . , 1980). Given the v a r i e t y of medical s e r v i c e s i n v o l v e d i n the c r i t i c a l l y i l l p a t i e n t ' s care and the l a c k of c r i t e r i a f o r the a p p l i c a t i o n of technology, nurses d e s c r i b e d a fragmentary approach to team decision-making. In a t r a n s c r i p t c i t e d e a r l i e r , PI spoke of an e t h i c s committee t r y i n g to make d e c i s i o n s 132 about a c h i l d without communicating with the nurses at the bedside. P7 spoke of the young man with leukemia who was 'allowed to d i e ' while s t i l l f u l l y v e n t i l a t e d , and r e c e i v i n g a n t i b i o t i c s but on whom no bloodwork was to be done. A f u r t h e r example of a fragmentary approach i s as f o l l o w s : P 8 : . . . not too long ago, I came on and was assigned to a woman who, w e l l , you know, multi-system f a i l u r e , she was dying, and again she was v e n t i l a t e d and she had, you know, 2 or 3 d r i p s [ i n o t r o p i c i n f u s i o n s ] , and i t was c l e a r t h a t the woman was not gonna make i t and she was young, but you know, there r e a l l y was no hope and I thin k what made me r e a l l y angry about t h i s s i t u a t i o n i s that they'd r e a l l y put o f f making her a No Code [no r e s u s c i t a t i o n ] , so when I came on i n the morning, you know, I c a l l e d and asked the A s s i s t a n t Head Nurses to get i t c l a r i f i e d , and t h i s woman's [blood] pressure had been s i t t i n g at 50 j u s t a l l n i g h t , so there was, I mean i f she was s t i l l a code in my mind she should've been, they should've been in that room f i r s t t h i n g i n the morning cuz she was probably one of the s i c k e s t p a t i e n t s i n the u n i t but f o r whatever reason, w e l l i t was the week-end for one t h i n g , so Dr. A wasn't there and there was 133 someone c o v e r i n g , but Dr. B who was c o v e r i n g , he's u s u a l l y q u i t e reasonable, but I don't to t h i s day understand why they p r o c r a s t i n a t e d so l o n g . So, and again, what was r e a l l y f r u s t r a t i n g about t h i s s i t u a t i o n was we were doing I thin k h o u r l y blood gases, or ho u r l y chemstrips and blood gases and then we were using the formula to r e p l a c e her b i c a r b s cuz she was so a c i d o t i c so every hour I was having to do these kinds of t h i n g s p l u s , you know, make up IV bags, administer a n t i b i o t i c s which i n my mind wasn't doing any good, and again, t h a t r e a l l y d e t r a c t e d from the kind of b a s i c t h i n g s that she needed l i k e mouth care, you know, eye ca r e , j u s t t u r n i n g her, but, and she was a l s o s t r i c t i s o l a t i o n so t h a t , g e t t i n g to go i n t o the room i s harder as w e l l , so I guess, so what happened was she a r r e s t e d and I j u s t h i t the c a l l button, not r e a l l y i n t e n d i n g to do anything major but they came immediately and someone dragged the c a r t i n , and as soon as they came i n t o the room, they s a i d , "Don't do anything", you know, so and that j u s t made me so angry t h a t , why cou l d n ' t they have come i n the morning and j u s t c l a r i f i e d t h a t . I: So i t was kind of a no d e c i s i o n u n t i l she a r r e s t e d ? 134 P8: That's r i g h t , and you know, there was t h i s f r i e n d of hers who was o u t s i d e most of the morning and he, w e l l we brought him i n as much as we p o s s i b l y c o u l d , but, and so I guess I f e l t l i k e I know we're supposed to go through the A s s i s t a n t Head Nurses but l o o k i n g at that s i t u a t i o n I would've j u s t gone, and I almost went to [another p h y s i c i a n ] and had him come i n t o the room and assess the p a t i e n t and make that d e c i s i o n , and I r e g r e t not doing t h a t , you know when you're not g e t t i n g anywhere that way. Team decision-making as d e s c r i b e d by the nurses i n t h i s study f r e q u e n t l y centered on the r e s u s c i t a t i o n s t a t u s of the p a t i e n t . The pre v i o u s t r a n s c r i p t from P8 i l l u s t r a t e s that r e s u s c i t a t i o n was at times the onl y concrete d e c i s i o n made by the team, and was f r e q u e n t l y made i n the context of i n c o n s i s t e n t approaches to other treatment measures by the s t a f f . The next t r a n s c r i p t f u r t h e r e x p l o r e s t h i s p o i n t : P4: . . . r i g h t now [ t h i s p h y s i c i a n ] does not, what d i d he say, we had a b i g d i s c u s s i o n on No Code [order f o r no r e s u s c i t a t i o n ] , what No Code means, and our i n t e r p r e t a t i o n of No Code i s t o t a l l y d i f f e r e n t than h i s i n t e r p r e t a t i o n of No Code. He's f i g u r e d No Code i s no r e s u s c i t a t i o n ; we f i g u r e d , u s u a l l y the way we d e a l t with a No Code was you stopped a l l treatment, you j u s t d i d s u p p o r t i v e treatment, kept the p a t i e n t comfortable and that was i t . He was not t h a t , he continued on g i v i n g a l l the f u l l treatment, the a n t i b i o t i c s and t h a t , but i f h i s p a t i e n t a r r e s t e d then he wouldn't do anything. Well, I mean, God, that can go on f o r days, and days. D e c i s i o n s to pursue r e s u s c i t a t i o n were a l s o d e s c r i b e d as sometimes d i f f i c u l t f o r the nurses i n v o l v e d to understand. To i l l u s t r a t e : P2: I thin k t h i s happened more i n a r r e s t s i t u a t i o n s where you'd gone to r e a l l y your maximum time l i m i t and you'd had no p o s i t i v e response or maybe they went i n t o some kind of rhythm f o r two minutes out of the l a s t hour kind of t h i n g , but you were r e a l l y we're l o o k i n g at f i x e d d i l a t e d p u p i l s here and a r e a l corpse, and then they'd say, Oh w e l l , l e t ' s t r y t h i s and be damned i f i t d i d n ' t work, and so then you keep somebody a l i v e f o r an e x t r a , say maybe they l a s t f o r s i x hours or something l i k e that before they a r r e s t again, but i t ' s s o r t of a needless a c t i v i t y , r e a l l y , you know. L i k e l e t ' s be a l i t t l e reasonable here and when the time i s up, the time i s up and i t ' s no 136 time to p l a y around and c r e a t e a c h r o n i c ICU type of p a t i e n t o f f of somebody that should have gone to the great ICU i n the sky kind of t h i n g , you know, j u s t f o r the sake of t r y i n g something. "Just f o r the sake of t r y i n g something" r e c a l l s C a s s e l l ' s (1986) warning that c r i t i c a l care u n i t s have become a s e l f - p e r p e t u a t i n g technology f o r r e s u s c i t a t i o n and maintenance of cardiopulmonary r e n a l f u n c t i o n . I n c o n s i s t e n t approaches to treatment d e c i s i o n s (e.g., d e c i d i n g not to r e s u s c i t a t e the p a t i e n t but c o n t i n u i n g with f u l l v e n t i l a t i o n and hemodynamic support) may r e f l e c t incomplete i n s t i t u t i o n a l p o l i c i e s and procedures (Alspach, 1985; Evans & Brody, 1985; Y a r l i n g & McElmurray, 1983). To summarize, a major emphasis i n nurses' e t h i c a l p e r s p e c t i v e s on the theme of s e n s e l e s s n e s s was concern about a s e n s e l e s s decision-making p r o c e s s . A s e n s e l e s s decision-making process was d e s c r i b e d i n terms of inadequate involvement of the p a t i e n t , inadequate involvement of the f a m i l y , inadequate involvement of the nurse, and fragmentary team decision-making. Inadequate involvement of the p a t i e n t took p l a c e i n the context of sometimes q u e s t i o n a b l e presumptions of p a t i e n t incompetence. Inadequate involvement of f a m i l y members was d e s c r i b e d by nurses i n terms of p a r t i a l , 137 p o o r l y presented, or misunderstood i n f o r m a t i o n . Nurses saw f a m i l y members as sometimes unable to re p r e s e n t the best i n t e r e s t s of the p a t i e n t because of t h e i r c o n f u s i o n with i n f o r m a t i o n presented to them from a v a r i e t y of medical s e r v i c e s and t h e i r c o n f u s i o n with the ambivalent a c t i o n s of the h e a l t h care team members. Inadequate involvement of the nurse i n decision-making was f r e q u e n t l y c i t e d , and e n t a i l e d f e e l i n g s of anger and f r u s t r a t i o n with p h y s i c i a n s , although some p a r t i c i p a n t s acknowledged p h y s i c i a n s ' d i f f i c u l t i e s i n making d e c i s i o n s i n 'grey areas' of p r o b a b i l i t i e s . Fragmentary team decision-making as d e s c r i b e d by the nurses i n t h i s study f r e q u e n t l y centered around d e c i s i o n s i n v o l v i n g the r e s u s c i t a t i o n s t a t u s of the p a t i e n t . Throughout nurses' d e s c r i p t i o n s were e t h i c a l dilemmas f o r the nurse that arose out of c o n f l i c t s between r i g h t s , d u t i e s , o b l i g a t i o n s or e t h i c a l p r i n c i p l e s . Returning to the l i t e r a t u r e at t h i s p o i n t , i t would appear that nurses experienced a paradox i n terms of what they thought should take p l a c e i n a c r i t i c a l care s e t t i n g and what they a c t u a l l y experienced. T h i s paradox can be viewed i n terms of F e s t i n g e r ' s (1957) theory of c o g n i t i v e dissonance. C o g n i t i v e dissonance i s c o n c e p t u a l i z e d by F e s t i n g e r as an i n c o n s i s t e n c y , or 138 " n o n f i t t i n g 1 r e l a t i o n s among c o g n i t i v e elements, that r e s u l t s i n p s y c h o l o g i c a l d i s c o m f o r t . The n o n f i t t i n g r e l a t i o n s among c o g n i t i v e elements would appear to be nurses' e t h i c a l p e r s p e c t i v e s that the process of decision-making was s e n s e l e s s , d e s p i t e t h e i r b e l i e f that decision-making i n c r i t i c a l care would o b j e c t i v e l y address p a t i e n t s ' responses to i l l n e s s , i n j u r y and treatment (Holloway, 1984; Hudak, G a l l o & Lohr, 1986; Kinney, 1981). Nurses' e t h i c a l p e r s p e c t i v e s of a s e n s e l e s s decision-making process o f t e n i n v o l v e d e x p r e s s i o n s of anger and f r u s t r a t i o n , which probably r e f l e c t e d the p s y c h o l o g i c a l d i s c o m f o r t they were e x p e r i e n c i n g i n terms of dissonance ( F e s t i n g e r , 1957). R. Lamb's (1985) study has por t r a y e d nurses e x p e r i e n c i n g extreme d i s c o m f o r t , or dissonance, when they saw themselves as unable to f o l l o w through on t h e i r moral c h o i c e s . W i l k i n s o n ' s (1985) study warned of the d i s t r e s s experienced by nurses when t h e i r moral c h o i c e s were unable to be t r a n s l a t e d i n t o moral a c t i o n . W i thin t h i s study, nurses' d i s c o m f o r t with t h e i r p e r s p e c t i v e s of a se n s e l e s s decision-making process i m p l i e s that the moral c h o i c e s made by nurses i n the s i t u a t i o n s they experienced were o f t e n unable to be c a r r i e d through i n moral a c t i o n . For example, i n the t r a n s c r i p t excerpt 139 c i t e d e a r l i e r from P8, her moral c h o i c e would have been to make her dying p a t i e n t comfortable and allow the f r i e n d to remain with the p a t i e n t . Instead, P8 was put in the p o s i t i o n of doing h o u r l y blood gases, mixing intravenous s o l u t i o n s , and i n general c a r r y i n g out the a p p l i c a t i o n of intense technology. Furthermore, a s e n s e l e s s decision-making process as d e s c r i b e d by nurses i n t h i s study i n v o l v e d p o o r l y informed p a t i e n t s and f a m i l i e s , l a c k of involvement of the nurse, and fragmentary team decision-making. T h i s process f a i l s to come c l o s e to the reasoned, c a r e f u l l y planned team approach c a l l e d f o r i n the e t h i c a l and nursing l i t e r a t u r e (Aroskar, 1985; C u r t i n , 1978; Davis, A., 1982; H a l l o r a n , 1982; Kemp, 1985; Lumpp, 1979; P e n t i c u f f , 1982; Pinch, 1985; Prato, 1981; Thompson & Thompson, 1978). I n f l u e n c e s on a Senseless Decision-Making Process. Nurses' e t h i c a l p e r s p e c t i v e s of a s e n s e l e s s decision-making process were d e s c r i b e d as being a f f e c t e d by the c u l t u r a l background of the p a t i e n t and fa m i l y , as w e l l as the l e g a l c l i m a t e of the p a t i e n t care s i t u a t i o n . The c u l t u r a l background of the p a t i e n t and f a m i l y was d e s c r i b e d by some nurses as making i t d i f f i c u l t to comprehend f a m i l y members' decision-making. C u l t u r e was' i n t e r p r e t e d by nurses as 140 i n c l u d i n g not o n l y the e t h n i c background of the p a t i e n t and f a m i l y , but a l s o the values and b e l i e f s of that p a t i e n t and f a m i l y that may have been d i f f e r e n t from that of the nurse. To i l l u s t r a t e : P4: . . . we had a p a t i e n t who was burned and that was h i s b e l i e f and h i s mother's b e l i e f [ C h r i s t i a n S c i e n t i s t ] , . . . my God we've done ev e r y t h i n g f o r t h i s guy, but they had a hard time d e a l i n g with that and t h i s guy was burned and he ended up having to go f o r a c o l i [cholecystectomy] too and we had to work on her f o r over a day to get the mother to s i g n the consent form so we c o u l d do t h i s on t h i s guy because he would have, with h i s burns and e v e r y t h i n g e l s e , he would have got s e p t i c from i t [the c h o l e c y s t i t i s ] and he would have d i e d . But i t was very d i f f i c u l t f o r us to t a l k her i n t o i t and i t was a r e a l dilemma f o r her and f o r us because t h i s guy was going to d i e u n l e s s , he's going to d i e unless we do i t . And she'd say, w e l l can you guarantee he won't d i e i f we don't do i t , and we had to go, w e l l , no. But anyways . . . he made i t through but we d i d do the c o l i . But, you know, i t ' s two strong b e l i e f s f i g h t i n g a g a i n s t each other, but I can see how i t would be hard f o r some people that have never, I guess i t ' s t h e i r 141 r e l i g i o u s b e l i e f s and t h a t ' s a l l they see. I: That's r i g h t , yeah. I t puts you i n a very d i f f i c u l t p o s i t i o n then, doesn't i t ? P4: Yes. Or anybody's r e l i g i o u s b e l i e f s , I guess I f i n d , I guess a l o t of people have a hard time, or I have a hard time d e a l i n g with a l o t of people's r e l i g i o u s b e l i e f s because I mean I don't r e a l l y go to church or anything l i k e t h a t . . . Nurses thus d e s c r i b e d d i f f i c u l t y i n understanding the decision-making process i n the context of a v a r i e t y of c u l t u r a l i n f l u e n c e s . L e i n i n g e r (1984) s t a t e s that c u l t u r e forms a " b l u e p r i n t f o r determining human d e c i s i o n making and a c t i o n s " (p. 42). L e i n i n g e r f u r t h e r notes that a " s e r i o u s c u l t u r a l l a g e x i s t s i n nurs i n g as nurses are expected to know, understand and work e f f e c t i v e l y with people of d i v e r s e c u l t u r e s , and yet have r e c e i v e d v i r t u a l l y no p r e p a r a t i o n i n t r a n s c u l t u r a l i s s u e s " (p. 42). The e t h i c a l p e r s p e c t i v e s of nurses i n terms of f a m i l y decision-making i n t h i s study r e f l e c t such a c u l t u r a l l a g . The l e g a l c l i m a t e of the p a t i e n t care s i t u a t i o n a l s o shed u n c e r t a i n t y on nurses' e t h i c a l p e r s p e c t i v e s on decision-making. In the next two t r a n s c r i p t e x c e r p t s , P4 e x p l o r e s these i m p l i c a t i o n s i n terms of 142 c r i m i n a l cases, n e g l i g e n c e , and an o v e r a l l u n c e r t a i n t y of her p o s i t i o n i n the law. P4: And the l e g a l ones, I haven't, you know you see a few of them or you see the ones from the j a i l or something l i k e t h a t , someone's t r i e d to knock somebody o f f , car a c c i d e n t s or something l i k e that where th e r e ' s c r i m i n a l negligence i n v o l v e d , and whatnot, but I don't understand why we have to, i f they're going to d i e , why we have to keep them a l i v e a few days longer because i t ' s a cou r t case. I've never q u i t e f i g u r e d that one out. P4: [re n e g l i g e n c e ] And i t ' s p r e t t y touchy, people are r e a l l y walking on, you know, people are r e a l l y u p t i g h t , everybody e l s e i s bending over backwards to t r y to make t h i s r i g h t , and t h a t ' s where I see i t , a f t e r t h at happens. You see the doct o r s being with, l e t t i n g the f a m i l y know e x a c t l y what's going on and a l l the time, and c o n s u l t i n g on the next course of treatment and s t u f f l i k e t h a t , and sometimes I t h i n k , "my God, t h i s should happen more o f t e n , maybe they'd do i t more o f t e n " , you know, a l o t of t h i n g s are done when people don't know why they're being done, l i k e t h a t , and a l l of a sudden they're o f f to get a CT [Computerized 143 A x i a l Tomography] scan and nobody knows why. You know, the f a m i l y doesn't know why, i t ' s j u s t decided and I t h i n k a l o t of times i t should be, " w e l l , we're going to do t h i s because" and I f i n d that that gets done more i f t h e r e ' s a l e g a l i s s u e a r i s i n g . I : That's an i n t e r e s t i n g p o i n t . P4: Even, I guess people are r e a l l y a f r a i d of the c o u r t system i t s e l f because even, while me I don't know that much about i t , but even i f the f a m i l y i s t h r e a t e n i n g to sue, I'm t h i n k i n g , "my God, they're way o f f base, t h e r e ' s no way" but maybe something c o u l d become of i t , I don't know. Given the l e g a l u n c e r t a i n t y d e s c r i b e d i n Chapter Two i n terms of treatment abatement i s s u e s , i t i s not s u r p r i s i n g to hear statements such as "people are r e a l l y a f r a i d of the c o u r t system i t s e l f " . The Law Reform Commission of Canada (1982) has warned that the c u r r e n t u n c e r t a i n s t a t e of the law w i l l have adverse e f f e c t s on h e a l t h care p r a c t i c e s . Within t h i s study, the l e g a l c l i m a t e was d e s c r i b e d by nurses as f u r t h e r confounding an a l r e a d y s e n s e l e s s decision-making p r o c e s s . Experiences of P a t i e n t s and F a m i l i e s as S e n s e l e s s . A second concern of nurses w i t h i n the theme of 144 s e n s e l e s s n e s s was that what was being experienced by p a t i e n t s and f a m i l i e s was s e n s e l e s s . In p a r t i c u l a r , nurses saw the s u f f e r i n g that p a t i e n t s and f a m i l y members experienced as s e n s e l e s s . Nurses' e x p r e s s i o n s of t h i s concern i n c l u d e d statements such as "no purpose" or "what's the p o i n t " . To i l l u s t r a t e : P 7 : . . . w e l l they say that our u n i t has a 25% m o r t a l i t y r a t e but I'm p o s i t i v e t h at i t ' s a l o t higher than t h a t , i t ' s probably almost 50% m o r t a l i t y r a t e of the people that come, a c t u a l l y come i n . And of those that go home, probably 25% d i e e x a c t l y i n the u n i t but probably 25% that make i t out d i e w i t h i n the next year. When you asked me to t a l k about dying p a t i e n t s i t was, I don't know, i t was r e a l l y hard to . . . dying p a t i e n t s , they're a l l d y ing, they come i n and they're a l l d y i n g . You know, the ones that are so v i v i d to your mind are the leukemics that we get, that by the time they reach our u n i t they don't make i t out. One i n , I've been there f o r 2-1/2 years, we've had over 10 leukemics, and probably I've seen one, and then we've got one now that might get out of the u n i t but the r e s t u s u a l l y go through the f u l l bleed-out procedure and dying, . . . The excerpt from P7 f u r t h e r i l l u s t r a t e s the 145 i n c o n s i s t e n c y between what nurses b e l i e v e d would take place i n c r i t i c a l c a r e , and what a c t u a l l y happens ("they're a l l d y i n g " ) . A major f a c e t of nurses' e t h i c a l p e r s p e c t i v e s of sensel e s s n e s s was a concern about the l o s s of p a t i e n t d i g n i t y . The f o l l o w i n g t r a n s c r i p t s p o r t r a y these concerns. P 7 : . . . I don't know, i t j u s t seems l i k e t h e r e's no d i g n i t y at a l l , t h e r e ' s no, the p a t i e n t i s n ' t allowed to d i e , you know, you have to t r y a l l these new a n t i b i o t i c s , even down, i t sounds b i z a r r e , but even down to the p o i n t where some a n t i b i o t i c s w i l l g ive people papules, and t h i s p e r f e c t l y normal person now i s coated i n z i t s , and you know, i t ' s l i k e another a n t i b i o t i c t h a t they've added that doesn't work but the r e s u l t i s s o r t of working and you know that i t ' s not, the person's going to d i e anyway, but now you've given them t h i s s k i n rash and they look d i s g u s t i n g , and the f a m i l y comes i n and goes, "What d i d you do to them?", you know, or "Do p a t i e n t s always get s k i n problems when they come i n t o ICU?" "No, i t ' s the a n t i b i o t i c s " , w e l l , "Why?" and s t u f f l i k e t h a t , and then they've got the tube [endotracheal] i n t h e i r mouth and then they've got an N.G. [ n a s o g a s t r i c tube] i n t h e i r 146 nose and then they get s c l e r a l edema from the high PEEP [ P o s i t i v e End E x p i r a t o r y Pressure; a v e n t i l a t o r mode] so that they're g r o s s l y deformed, and they j u s t s o r t o f , I don't know, they t u r n i n t o , i t ' s not human anymore. P2: I mean, when, I remember times when d o c t o r s would come on rounds and they'd be seeing a p a t i e n t who [was], you know the term ' l i g h t s on and no one's home', they may not be unconscious but they're not here, and you know they'd j u s t not r e a l l y have that much r e s p e c t f o r them as f a r as they'd want to show the r e s i d e n t s and the i n t e r n s something and they'd whip down the sheets and the p a t i e n t would be l y i n g there s t a r k naked and then they'd go on and s t a r t t a l k i n g , and so you'd cover them back up again and they'd whip the sheets back down again and t h i n g s l i k e t h a t . And so o b v i o u s l y there's no d i g n i t y i n that and t h e r e ' s , I don't know, some of the t h i n g s that we do to people there's no d i g n i t y i n e i t h e r and even i f p a t i e n t s do get out of the [ h o s p i t a l ] , do get out of ICU, a l o t of them t h e i r chances of l e a v i n g the h o s p i t a l are f a i r l y s l i m , so you s o r t of wonder i s i t r e a l l y a l l worth i t at that p o i n t too, . . . 147 Loss of d i g n i t y , then, i n v o l v e d a change i n p h y s i c a l appearance that l e f t p a t i e n t s l o o k i n g " g r o s s l y deformed" and "not human". Loss of d i g n i t y a l s o i n v o l v e d l o s s of the a b i l i t y to respond to o t h e r s ( ' l i g h t s on and no one's home') and o f t e n r e s u l t e d i n a c t i o n s by ot h e r s such as "whipping the sheets back" that i n d i c a t e d a l o s s of r e s p e c t . Loss of r e s p e c t f o r p a t i e n t s thus i n c l u d e d a l o s s of p r i v a c y . Given that these p a t i e n t s were d e f i n e d by nurses as dyi n g , l o s s of d i g n i t y was p a r t i c u l a r l y emphasized as s e n s e l e s s . The not i o n of death with d i g n i t y explored i n Chapter Two means that the i n d i v i d u a l has the r i g h t to make sense of and c h o i c e s i n t h e i r own dying process, and at the l e a s t the r i g h t to be valued and r e s p e c t e d . Nurses' experiences were that t h i s was o f t e n not the case. T h i s presented an e t h i c a l dilemma to nurses because they were unable to uphold the e t h i c a l p r i n c i p l e of autonomy, or r e s p e c t f o r persons. C l o s e l y r e l a t e d to the concern f o r l o s s of p a t i e n t d i g n i t y were concerns about the q u a l i t y of the p a t i e n t ' s l i f e . PI spoke i n a t r a n s c r i p t presented at the outset of t h i s Chapter of a "complete l a c k of any so r t of sensory input or any enjoyment", and the la c k of i n t e r p e r s o n a l r e l a t i o n s h i p s . Most other p a r t i c i p a n t s spoke of l o s s of q u a l i t y of l i f e i n terms 148 of the s e n s e l e s s n e s s of p a t i e n t s u f f e r i n g . The next two t r a n s c r i p t s i l l u s t r a t e nurses' concerns about the s e n s e l e s s n e s s of p a t i e n t s u f f e r i n g . P4: . . . you're with the p a t i e n t a l l the time and I think t h a t ' s s o r t of f o r g o t t e n along the way a l o t of times, you know, we're o r d e r i n g these t e s t s and w e ' l l t r y one more t h i n g , i s i t going to be b e n e f i c i a l , we had t h i s poor o l d guy t h a t ' s burnt, he's got a r e a l l y r o t t e n chest and he's seventy years o l d , he l o s t h i s wife i n the f i r e and he's got b i l a t e r a l amputations, why are we c o n t i n u i n g to t r e a t t h i s guy - he may l i v e , which he d i d , but he d i e d when, soon a f t e r he went home. I thi n k i t ' s pure h e l l to put someone through t h a t , and that o l d . I: Both the p h y s i c a l pain of the burn and the emotional pain of the l o s s . P4: Emotional p a i n , he l o s t h i s w i f e , he's got to r e - l e a r n a l o t of t h i n g s , I mean, he was amputated above the elbow and one below, what's he going to do? I mean the p h y s i c a l d e f o r m i t i e s that he had, other than that the s c a r s , I mean i t ' s a long process a f t e r being burnt. P 5 : . . . dying with d i g n i t y , we've got a case 149 i n now that the chap has, he's completely debrided l i k e from h i s back r i g h t down to h i s kneecaps and has nothing, the o n l y t h i n g they c o u l d do would be a hemi-pelvectomy on him, he's f u l l of gangrene, and the f a m i l y member wants e v e r y t h i n g done f o r him and the guy, you know, he's j u s t , an EEG [Electroencephalogram] has been done and i t ' s completely f l a t , but yet f a m i l y members want to continue on with t h i s treatment, and to do t h i s d r e s s i n g i s j u s t horrendous on the s t a f f t h a t has to do i t and I don't care whether someone says, w e l l he's on a f l a t EEG, he knows nothing of i t , who am I to say, I mean, he c o u l d be s i t t i n g i n the corner watching me do, you know, pack h i s bum . . . P a t i e n t s u f f e r i n g , then, i s seen by nurses as p h y s i c a l as w e l l as p s y c h o l o g i c a l , a " s t a t e of severe d i s t r e s s a s s o c i a t e d with events that t h r e a t e n the i n t a c t n e s s or wholeness of the person" ( C a s s e l l , 1983, p. 522). The f i r s t t r a n s c r i p t excerpt i l l u s t r a t e d a nurse e x p r e s s i n g concern f o r the emotional pain of a p a t i e n t whose l o s s had threatened h i s wholeness as a person. The second t r a n s c r i p t excerpt i n d i c a t e s a presumption of s u f f e r i n g even with a completely unconscious p a t i e n t . Nurses' concerns about the s e n s e l e s s n e s s of l o s s of p a t i e n t d i g n i t y and the l o s s of q u a l i t y of the 150 p a t i e n t ' s l i f e would appear to support the n o t i o n that nursing i s a moral a r t , advocating u n i v e r s a l v a l u e s of human autonomy and d i g n i t y ( C u r t i n , 1982b; Gadow, 1980/1983; Murphy, 1983). The foundation of the n u r s e - p a t i e n t r e l a t i o n s h i p has been d e s c r i b e d as p a t i e n t - c e n t e r e d advocacy ( C u r t i n , 1979; Gadow). Given that foundation, C u r t i n (1979) s t a t e s that "[we] must -as human advocates - a s s i s t p a t i e n t s to f i n d meaning or purpose i n t h e i r l i v i n g or i n t h e i r d y i n g " (p. 7). Nurses' e t h i c a l p e r s p e c t i v e s of se n s e l e s s n e s s i n d i c a t e d that nurses were concerned about the l o s s of meaning or purpose i n t h e i r p a t i e n t s ' experiences of p r o l o n g a t i o n of the process of dy i n g . Given p a t i e n t s i n c r i t i c a l care s e t t i n g s who are f r e q u e n t l y unconscious, the m a j o r i t y of the emphasis on s u f f e r i n g i n the i n t e r v i e w s with nurses was i n terms of f a m i l y s u f f e r i n g . The next three t r a n s c r i p t s e x p l o r e nurses' concerns about f a m i l y s u f f e r i n g : P3: The hardest t h i n g I t h i n k , the r e a l l y hardest t h i n g about dying i n I n t e n s i v e Care i s one of a medical problem, or when . . . I'm t h i n k i n g of a man who was badly i n j u r e d and was going to d i e and s u f f e r e d s e v e r a l amputations before h i s i n e v i t a b l e death and i t was r e a l l y hard to be hopeful or to t a l k about some s o r t of j u s t i c e , some 151 s o r t of way of her t h i n k i n g about i t because, of his wife t h i n k i n g about i t , because he was going to die and i t seemed that you know, people want to know about chances, w e l l , can I hope today, can I go home and have any hope l e f t , and i f not, then why are we s t i l l doing a l l these t h i n g s , and when, he r o i c measures, when r e l a t i v e s aren't r e a l l y about to say, I r e f u s e , or I i n t e r v e n e , and say no to those kinds of measures. They can't r e a l l y say as long as the medical s t a f f g ive any hope and they r e a l l y aren't i n c l u d e d i n the c o n v e r s a t i o n . P2: [speaking of p a t i e n t s f o l l o w i n g an a r r e s t procedure] Yeah, i t was r e a l l y f r u s t r a t i n g . E s p e c i a l l y when you're l o o k i n g a f t e r , you know, you have to look a f t e r the p a t i e n t afterwards and they a l l l e a v e and you know, you see t h i s guy who's l y i n g there and being v e n t i l a t e d and supported with a l l these drugs and the g r i e f i t causes f o r the fa m i l y , when they come i n and t h i s i s a person who's t o t a l l y unrecognizable to them at t h i s p o i n t , whereas when he f i r s t a r r e s t e d ; and i f you'd l e f t w e l l enough alone and stopped the a r r e s t when i t should have been stopped, he s t i l l would have been r e c o g n i z a b l e to them, but by c o n t i n u i n g on and 152 r e s u s c i t a t i n g them beyond the p o i n t , you know, you get somebody who's got leaky c a p i l l a r i e s and they've got venous congestion and t h e i r head's swelled and blue, and t h e i r tongue i s s t i c k i n g out and . . . Is There's blood a l l over the p l a c e . P2: Yeah, I mean i t ' s not a p r e t t y s i g h t and you know, a l o t of these l i t t l e o l d l a d i e s l o v e , you know, want to see t h e i r husbands before they go or v i c e versa and the l a s t t h i n g they see i s t h i s h o r r i b l e b l o a t e d t h i n g and i t ' s a b s o l u t e l y nothing l i k e the person they've l o v e d and l i v e d with f o r the l a s t 40 or 50 years or whatever, and I don't think t h a t ' s f a i r . I t ' s a t e r r i b l e t h i n g to put on the f a m i l y . P4: I t ' s l i k e we had t h i s burn, that was an e l e c t r i c a l burn, that was 3rd [ t h i r d d egree], l i k e i t was so deep i t was almost . . . you know i t was r e a l l y deep, and the onl y t h i n g that wasn't burnt was the s o l e s of h i s f e e t , l i k e you know so from here down, from h i s boots. They t o l d i n Emerg, they s a i d that t h i s guy had maybe a 5% chance of s u r v i v a l , so h i s wife s a i d l e t ' s go f o r i t . So f o r two weeks she l i v e d through h e l l , and she was the 153 one that f i n a l l y s a i d l e t ' s q u i t t h i s . Nurses saw the u n c e r t a i n t y of f a m i l y members i n terms of what was happening to the p a t i e n t ("why are we s t i l l doing a l l these t h i n g s " , "they s a i d t h i s guy had a 5% chance of s u r v i v a l " ) as t h r e a t e n i n g f a m i l y members' i n t a c t n e s s and wholeness. Family members were a l s o seen to s u f f e r as they witnessed the changes i n the p h y s i c a l appearance of t h e i r loved one. Nurses' d e s c r i p t i o n s of the s u f f e r i n g of f a m i l y members appears to i n d i c a t e that nurses' e t h i c a l o b l i g a t i o n s to take care of f a m i l y members were v i o l a t e d . Furthermore, nurses' emphasis on the s u f f e r i n g of fa m i l y members suggests that nurses extended t h e i r advocacy to the f a m i l y . Nurses expressed a great d e a l of concern that f a m i l y members had d i f f i c u l t y i n f i n d i n g meaning or purpose i n t h e i r experiences of the p r o l o n g a t i o n of the process of dying of t h e i r l o v e d one. The American A s s o c i a t i o n of C r i t i c a l Care Nurses' (1981) d e s c r i p t i o n of c r i t i c a l care n u r s i n g as a s p e c i a l t y i n c l u d e s a mandate f o r r e c o g n i t i o n and a p p r e c i a t i o n of the i n d i v i d u a l ' s s i g n i f i c a n t s o c i a l r e l a t i o n s h i p s . The emphasis from nurses i n t h i s study on advocacy f o r the f a m i l y goes w e l l beyond the acknowledged mandate. 154 I n f l u e n c e s on Nurses' P e r s p e c t i v e s of Experiences  of P a t i e n t s and F a m i l i e s as S e n s e l e s s . One concern expressed by nurses w i t h i n the o v e r a l l theme of se n s e l e s s n e s s , then, was that what was being experienced by the p a t i e n t s and f a m i l y members was s e n s e l e s s . Nurses f r e q u e n t l y d e s c r i b e d t h i s concern as being i n f l u e n c e d by the context of the p a t i e n t ' s l i f e h i s t o r y , and by nurses' own i d e n t i f i c a t i o n with that l i f e h i s t o r y . The i n f l u e n c e of the p a t i e n t ' s l i f e h i s t o r y on nurses' p e r s p e c t i v e s of se n s e l e s s n e s s i s p o r t r a y e d i n the f o l l o w i n g t r a n s c r i p t s : P 6 : . . . of course my f e e l i n g s changed depending upon whether they were an o l d p a t i e n t , whether they were a t e r m i n a l p a t i e n t , i n those cases I f e l t that they d i d probably have a very good l i f e , I hope that they had had a very good l i f e and i t was fun and j u s t ending i t now so that they were out of t h e i r s u f f e r i n g . P 5 : I t depends on the s i t u a t i o n of a p a t i e n t t h a t ' s coming i n , say i f i t ' s a donor p a t i e n t [organ t r a n s p l a n t donor] and I hate to say i t , but i f i t ' s been i n v o l v e d i n MVA [motor v e h i c l e a c c i d e n t ] that i t ' s t h e i r f a u l t or they're d i r e c t l y 155 r e s p o n s i b l e , that I seem to more or l e s s detach myself from the s i t u a t i o n versus i f someone comes in t h a t ' s h i t by a drunk d r i v e r o r, you know, a s i t u a t i o n t h a t they're not i n c o n t r o l o f , I tend to get, I don't know, I seem to f e e l more f o r the f a m i l y than the a c t u a l p a t i e n t i t s e l f . We get a l o t of gang b e a t i n g s and whatnot and I can t o t a l l y detach myself from that p a t i e n t and go and d e l i v e r my care . . . P7: I f someone's coming i n who's dying who's 83 and they're completely independent or the y ' r e , and you know, they're dying or they've had t h i s h o r r i b l e mishap, I think a l o t of i t depends on why they're d y i n g . I t ' s very hard to f e e l compassion f o r someone who's been d r i n k i n g h e a v i l y , smoking h e a v i l y , has COPD [Chronic O b s t r u c t i v e Pulmonary D i s e a s e ] , and has d i a b e t e s . And they're coming i n because they've had a c a r d i a c a r r e s t , or they're coming i n because they're, you know, the c l a s s i c i s they ran out i n the middle of the ni g h t to get a package of c i g a r e t t e s t h a t they had to have and they J-walked i n f r o n t of the road so they get snuffed by a tr u c k , you know, and you're l o o k i n g at t h i s person t h i n k i n g , I'm r e a l l y gonna have to d i g 156 deep to f i n d compassion f o r you! I f you'd have stayed home and missed that one c i g a r e t t e you'd be a l i v e and we wouldn't have to be d i s c u s s i n g your death. But the ones that come i n th a t have been r e a l l y r e a l l y h e a lthy and they come i n with a bowel o b s t r u c t i o n and then they get s e p t i c and they go down f u r t h e r i n the tubes and you t h i n k , you know, and t h a t ' s when you go through a l l the busi n e s s of they're not being d i g n i f i e d and they're not, t h a t ' s when you put them up i n the c h a i r and they're d r o o l i n g and they're, you know, t i e d i n the c h a i r , and the f a m i l y comes i n and goes, "That's my r e l a t i v e ? " And you're going, "Yeah, and they look g r e a t ! " And you th i n k , w e l l , i f that was my mother I would be h o r r i f i e d , . . . The emotional impact of nurses' p e r s p e c t i v e s of sensel e s s n e s s thus appeared to have been les s e n e d i f the s i t u a t i o n was viewed as the end of a good l i f e , or i f the s i t u a t i o n was viewed to be the consequence of the p a t i e n t s ' own a c t i o n s . Most p a r t i c i p a n t s i n d i c a t e d that a s i t u a t i o n i n v o l v i n g an unexpected event t h a t the p a t i e n t was not i n c o n t r o l of was p e r c e i v e d as e s p e c i a l l y s e n s e l e s s . Nurses' personal i d e n t i f i c a t i o n with the p a t i e n t s ' l i f e h i s t o r y a l s o accentuated the emotional impact of 157 t h e i r e t h i c a l p e r s p e c t i v e s of s e n s e l e s s n e s s . To i l l u s t r a t e : PI: I t h i n k my most traumatic death at Hosp. A was a l i t t l e 7 or 8 year o l d boy who was, i n f a c t , a very s i m i l a r age.to my son, so I had a r e a l s o r t of personal l e v e l t h e r e , and he was knocked down by a t r u c k , he'd been out on h i s bike and he was r e a l l y severe, awful head i n j u r y , r e a l l y q u i t e gross, and I had to, I came on s h i f t and you know he was j u s t dying, they were j u s t pumping blood i n t o him and he was j u s t pouring blood and h i s b r a i n s and t i s s u e s and to see a l l that coming out, and i t was r e a l l y r e a l l y q u i t e awful and I th i n k t h a t ' s r e a l l y the most u p s e t t i n g death I've ever had to be around. I r e a l l y f e l t q u i t e nauseated by the l a c k of purpose to i t , somehow a c c i d e n t a l death, and i t was somewhat h i s age group - I co u l d r e a l l y r e l a t e to t h a t , i t r e a l l y got me c l o s e to home. I thin k t h a t ' s something e l s e that makes i t r e a l l y hard i s when i t ' s someone i n your age group or they remind you of somebody t h a t ' s r e a l l y c l o s e to home. I think t h a t ' s what bothers us, when you can r e a l l y r e l a t e to them and you th i n k that t h a t could have been me . . . 'But f o r the grace of God there go I' . 158 P 6 : I f they were a p a t i e n t who was approximately around my age, you know, I knew what they were going through, I co u l d r e l a t e to t h e i r space i n l i f e and [ i t was worse]. P3: I think the time that I remember . . . most v i v i d l y i s on Christmas morning when I was missing my f o l k s very much, 3,000 miles away, and a p a t i e n t who had been s i c k a l l n i g h t , at 7:30 i n the morning took a dramatic t u r n , and I had to phone the fa m i l y . I co u l d n ' t face them because of my own g r i e f , and my imagination about how awful t h i s must be . . . From the p r e v i o u s t r a n s c r i p t e x c e r p t s , then, i t can be seen that nurses found the se n s e l e s s n e s s of what was experienced by some p a t i e n t s and f a m i l i e s was " c l o s e to home". Nurses used terms such as "traumatic" and "awful" when they i d e n t i f i e d with the l i f e h i s t o r y of the p a t i e n t s or f a m i l i e s . Nurses' A c t i v i t i e s as Sen s e l e s s . A t h i r d concern d e s c r i b e d by nurses was that the a c t i v i t i e s they found themselves i n v o l v e d i n to implement the treatment regime were seen as s e n s e l e s s . For example, i n a previous t r a n s c r i p t e xcerpt, P8 spoke of doing h o u r l y bloodwork and mixing intravenous i n f u s i o n s , which took 159 away from the b a s i c care needs of her p a t i e n t , such as mouth c a r e . A c t i v i t i e s to implement the treatment regime were seen as s e n s e l e s s p r i m a r i l y because the nurses d e f i n e d t h e i r p a t i e n t s as d y i n g . The next two t r a n s c r i p t e x c e r p t s e l a b o r a t e on t h i s p e r s p e c t i v e : P2: . . . I remembered how f r u s t r a t i n g i t can be and j u s t the f e e l i n g s of hopelessness and why am I . even here because h a l f of what I'm doing i s n ' t going to make any d i f f e r e n c e anyway. PI: . . . I t gave you a r e a l sense o f , s o r t o f , you knew i t was important to care w e l l f o r t h e i r bodies somehow and yet i t r e a l l y was s o r t of s e l f - d e f e a t i n g and I thin k i n y o u r s e l f you f e l t as i f you weren't r e a l l y doing anything r e a l l y c o n s t r u c t i v e or r e a l l y p o s i t i v e . Senseless a c t i v i t i e s t h a t the nurses found themselves i n v o l v e d i n , then, were d e s c r i b e d i n terms of "hopelessness" and " s e l f - d e f e a t i n g " . As mentioned e a r l i e r i n t h i s Chapter, PI d e s c r i b e d her p e r s p e c t i v e s as "rows of p a t i e n t s going nowhere", and P 4 s t a t e d ". . . and I think we're l o o k i n g a f t e r a l o t of people that are dying and I think i t ' s f r u i t l e s s . . .". Together, these accounts p o r t r a y a paradox i n terms of what nurses t h i n k they should be doing i n a c r i t i c a l 160 care s e t t i n g and what they are a c t u a l l y i n v o l v e d i n . As was i n d i c a t e d i n Chapter One, c r i t i c a l care n u r s i n g has been d e f i n e d as "the n u r s i n g of people undergoing l i f e - t h r e a t e n i n g p h y s i o l o g i c c r i s e s " (Holloway, 1984, p. 1) with an emphasis placed on the nurse's decision-making s k i l l s to i n t e r v e n e i n the p a t i e n t ' s responses to i l l n e s s , i n j u r y and treatment (Holloway, 1984; Hudak, G a l l o & Lohr; 1986; Kinney, 1981). As d e s c r i b e d by P6 i n a l a t e r t r a n s c r i p t excerpt, the a c q u i s i t i o n of these decision-making s k i l l s i n v o l v e s c o n s i d e r a b l e p r e p a r a t i o n by the nurse. Despite the supposed emphasis on h e l p i n g p a t i e n t s through l i f e - t h r e a t e n i n g p h y s i o l o g i c a l c r i s e s , nurses o f t e n d e s c r i b e d t h e i r a c t i v i t i e s with p a t i e n t s i n terms of " f r u i t l e s s " , " s e l f - d e f e a t i n g " , "going nowhere", "hopeless", or " n o n s e n s i c a l " . The f e e l i n g s a s s o c i a t e d with these terms probably r e f l e c t nurses' experiences of dissonance ( F e s t i n g e r , 1957) a r i s i n g from what they thought they should be doing, and from the v a r i o u s e t h i c a l dilemmas inherent i n t h e i r e x p e r i e n c e s . Another c o n s i d e r a t i o n i n nurses' e t h i c a l p e r s p e c t i v e s of the s e n s e l e s s n e s s of the a c t i v i t i e s they were i n v o l v e d i n was t h e i r l a c k of s a t i s f a c t i o n . Lack of s a t i s f a c t i o n i n t h e i r a c t i v i t i e s comes through in statements such as "why am I even here" and "you 161 weren't r e a l l y doing anything r e a l l y c o n s t r u c t i v e or r e a l l y p o s i t i v e " . The l i t e r a t u r e reviewed i n Chapter Two i n d i c a t e d that sources of s a t i s f a c t i o n may be important b u f f e r s a g a i n s t s t r e s s and burnout (Pines & Kanner, 1982). Nurses' e t h i c a l p e r s p e c t i v e s of sense l e s s n e s s i n t h i s study i n d i c a t e d that such b u f f e r s were not always pres e n t . E x p l o r i n g t h i s n o t i o n f u r t h e r , nurses a l s o i d e n t i f i e d that a c t i v i t i e s such as doing bloodwork and mixing intravenous s o l u t i o n s got i n the way of t h e i r d e l i v e r y of b a s i c n u r s i n g c a r e . A c t i v i t i e s were viewed as s e n s e l e s s not onl y because they were p e r c e i v e d as u s e l e s s , but a l s o because they hindered the d e l i v e r y of b a s i c c a r e . Nurses' d i f f i c u l t i e s with the a c t u a l i t i e s of work l i f e that take away from what they f e e l to be ' r e a l ' n u r s i n g have been i d e n t i f i e d i n terms of r o l e c o n f l i c t (Benne & Bennis, 1959). There appeared to be at l e a s t some r o l e c o n f l i c t inherent i n nurses' concerns. I n f l u e n c e s on Nurses' P e r s p e c t i v e s of T h e i r  A c t i v i t i e s as S e n s e l e s s . Nurses' e t h i c a l p e r s p e c t i v e s of the a c t i v i t i e s they found themselves i n v o l v e d i n were d e s c r i b e d as being i n f l u e n c e d by the l e n g t h of exposure the nurse had to p a t i e n t s e x p e r i e n c i n g p r o l o n g a t i o n of the process of dy i n g . Length of 162 exposure, or l o n g e v i t y as a c r i t i c a l care nurse, was thus an important i n f l u e n c e on nurses' p e r s p e c t i v e s of t h e i r a c t i v i t i e s as s e n s e l e s s . The next t r a n s c r i p t excerpt e x p l a i n s t h i s i n f l u e n c e : P 6 : When you f i r s t s t a r t down you are so e n t h u s i a s t i c , you f i n a l l y made i t to C r i t i c a l Care, have t h i s d e l u s i o n that you're going to do a b s o l u t e l y wonderful i n c r i t i c a l c a r e , you go through your o r i e n t a t i o n p e r i o d where you have, you know, stack s of modules that you have to read, you a l l of a sudden r e a l i z e t h a t you're s t u p i d e r than you thought you were, th e r e ' s more s t u f f t h a t you r e a l l y have to l e a r n , and b a s i c a l l y the f i r s t s i x months i s f e a r , and you're a l s o working with, you're being precepted by people who want t h i n g s done e x a c t l y the way t h i n g s should be done and you're not as quick, so the f i r s t s i x months you're a b s o l u t e l y t e r r i f i e d and once you s t a r t , somewhere between the f i r s t s i x months and a year i n c r i t i c a l care you s t a r t f e e l i n g a l i t t l e b i t more comfortable and being able to kind of get away from the nest and being able to cope, although you know that someone's always there to help you i f need be. And once you're able to s t a r t standing on your f e e t a l i t t l e more and s t a r t seeing a l i t t l e b i t 163 more of the type of c l i e n t e l e that come through, then you s t a r t seeing the n o n - s e n s i c a l t h i n g s , you know, once you've seen three of four g r a f t versus host [leukemic bone-marrow t r a n s p l a n t r e j e c t i o n s ] or you know, three or four 90% burns that you've g r a f t e d ad i n f i n i t u m and you know they're going to buy the farm, they're going to d i e , then you s t a r t , but i t ' s a matter of seeing repeated cases too, I mean, your f i r s t b i g bad burn and your f i r s t g r a f t versus host or your f i r s t whatever, you greet with great enthusiasm and you're going to cure the world and e v e r y t h i n g and then a l l of a sudden, you know that r e g a r d l e s s of how much you f l o g them, you're s t i l l f l o g g i n g a dead horse. Statements from P6 such as "you s t a r t seeing the n o n - s e n s i c a l t h i n g s " and "you're s t i l l f l o g g i n g a dead horse" i l l u s t r a t e the growing awareness of sensel e s s n e s s that develops over time. P r e r e q u i s i t e to such an awareness i s the nurses' competence i n the biomed i c a l tasks she has to master ("once you're able to s t a r t standing on your f e e t a l i t t l e more"). Finding New Meanings I n t r o d u c t i o n . Nurses' e t h i c a l p e r s p e c t i v e s on nursing dying p a t i e n t s i n c r i t i c a l care s e t t i n g s centered around a theme of s e n s e l e s s n e s s . Concurrent 164 with nurses' e t h i c a l p e r s p e c t i v e s of s e n s e l e s s n e s s were t h e i r d e s c r i p t i o n s of t h e i r attempts to cope with t h e i r e t h i c a l p e r s p e c t i v e s . Nurses' d e s c r i p t i o n s of coping with t h e i r e t h i c a l p e r s p e c t i v e s i n v o l v e d attempts to f i n d new meanings by s h i f t i n g t h e i r focus of a c t i o n . T h i s was d e s c r i b e d as having three dimensions. One dimension was a focus on p a t i e n t comfort, a second dimension was a focus on f a m i l y support, and a t h i r d dimension was a focus on each nurses' p e r s o n a l p h i l o s o p h y . Focus on P a t i e n t Comfort. P a r t i c i p a n t s i d e n t i f i e d that when they f i r s t a r r i v e d as neophyte nurses i n ICU they focused on becoming competent i n the b i o m e d i c a l tasks of p a t i e n t c a r e , such as hemodynamic monitoring and v e n t i l a t o r management. Once they became competent in these a c t i v i t i e s , and subsequent to growing e t h i c a l p e r s p e c t i v e s of s e n s e l e s s n e s s , they s h i f t e d focus to more c a r e - o r i e n t e d a c t i v i t i e s . C a r e - o r i e n t e d a c t i v i t i e s p l a c e d emphasis on making the p a t i e n t comfortable. The next t r a n s c r i p t excerpt p r o v i d e s an example of how some p a r t i c i p a n t s d e s c r i b e d t h i s p r o c e s s : P3: I t h i n k t h a t ' s how people measure t h e i r s a t i s f a c t i o n with t h e i r job. I : Is with how w e l l they're able to care? 165 P3: Yeah, or maybe to put i t as i n v e r s e l y p r o p o r t i o n a l to what you can't do f o r the p a t i e n t s g e t t i n g b e t t e r , you can do f o r comfort and you need s a t i s f a c t i o n out of one or the other i n any day. Is Do you see that changing over time? In your c a r e e r , I mean, has that focus changed f o r you? P3: Yeah i t has, my i n t r o d u c t i o n was so overpowering medical that i t d i d n ' t , i t took me a long time to develop the imagination and the forwardness to step i n and say, I can, I'd r a t h e r wash your h a i r than get that a n t i b i o t i c i n on time, s o r t of t h i n g . And now I know my p r i o r i t i e s , but t h e y ' l l change everyday too depending on what the weight i s of the medical e x p e r i e n c e . Is So i f i t ' s somebody i n s e p t i c shock, the a n t i b i o t i c i s more important, so that what that means then i s that you change your p r i o r i t i e s , that e v e r y t h i n g i s s i t u a t i o n a l l y dependent, i s that i t ? P3: Yeah. Depending on the p a t i e n t ' s needs. Is So the context of what's going on i s very important as to how you implement t h a t ? P3s Yeah, t h a t ' s r i g h t , and how much time i t takes to do i t , and how much I b e l i e v e t h a t t h a t ' s the most important t h i n g to do. I th i n k with every p a t i e n t you do develop a d i f f e r e n t b e l i e f about 166 what's more important and i t has to do with t h e i r , the best of t h e i r w e l l - b e i n g , e i t h e r the p o t e n t i a l cure or the present comfort. . . . I t h i n k when I was very new there I was j u s t boggled by the medical terminology and wanted to keep up with the s t a f f , and the other t h i n g i s that when you're new and not known and very shy about even j o k i n g with other people because u n t i l you're p r o f e s s i o n a l l y accepted you're not s o c i a l l y accepted, so t h a t I think i s one of the main reasons f o r not opening up your imagination and being c r e a t i v e , and r i s k i n g sounding f o o l i s h by saying something that would be on a comfort measure and not a medical measure. I think that t h a t ' s . . . I: So you have to do that from the base of s e c u r i t y i n y o u r s e l f ? P3: You do, you r e a l l y do. To know t h a t nobody's going to laugh at you because you're washing t h e i r h a i r and not g e t t i n g t h e i r a n t i b i o t i c i n time, you've got a reason that you can support, • • • The e a r l i e r t r a n s c r i p t excerpt from P6 and t h i s excerpt from P3 both i n d i c a t e that nurses' i n i t i a l i n t r o d u c t i o n to c r i t i c a l care was focused on mastering the knowledge and s k i l l s necessary f o r safe p r a c t i c e i n 167 the n u r s i n g s p e c i a l t y . Subsequent to growing p e r s p e c t i v e s of sens e l e s s n e s s and i n c r e a s i n g c o n f i d e n c e in t h e i r a b i l i t i e s , nurses d e s c r i b e d a s h i f t of focus to p a t i e n t comfort. Some nurses saw the focus on p a t i e n t comfort as always having been important to them. Regardless of how they saw the process of f o c u s i n g on p a t i e n t comfort e v o l v i n g i n t h e i r c a r e e r as c r i t i c a l care nurses, most p a r t i c i p a n t s d e s c r i b e d t h e i r focus i n the f o l l o w i n g manner: P2: . . . I guess the onl y t h i n g you can do i s j u s t t r y and make people comfortable f o r whatever time they have l e f t and t r y and gi v e them some s o r t of d i g n i t y . R e l i e f of s u f f e r i n g and promotion of p a t i e n t d i g n i t y were i m p l i c i t i n many nurses' accounts, and r e i t e r a t e nurses' n o t i o n s of themselves as p a t i e n t advocates ( C u r t i n , 1979; Gadow, 1980/1983; Murphy, 1983). Given nurses' e t h i c a l p e r s p e c t i v e s of the sensel e s s n e s s of t h e i r a c t i v i t i e s v i s - a - v i s i n treatment regimes, a focus on p a t i e n t comfort helped nurses to f i n d some purpose i n otherwise " s e l f - d e f e a t i n g " a c t i v i t i e s . P3's statement t h a t "you need s a t i s f a c t i o n " i l l u s t r a t e s that a focus on p a t i e n t comfort helped nurses to f e e l some s a t i s f a c t i o n i n 168 making the p a t i e n t comfortable. A focus on p a t i e n t comfort probably a l s o helped to r e l i e v e nurses' experiences of t h e i r e t h i c a l dilemmas. I n f l u e n c e s on Nurses' Focus on P a t i e n t Comfort. A s i g n i f i c a n t i n f l u e n c e d e s c r i b e d by nurses i n t h e i r accounts of t h e i r focus on p a t i e n t comfort was a n a l g e s i a . Nurses' use of a n a l g e s i a c a r r i e d with i t s i g n i f i c a n t i m p l i c a t i o n s i n terms of nurses' r e l a t i o n s h i p s with the p h y s i c i a n s . Many p a r t i c i p a n t s s t a t e d that they f e l t s t r o n g l y that l i b e r a l a n a l g e s i a was a means to promote p a t i e n t comfort. Many p a r t i c i p a n t s a l s o s t a t e d that t h e i r use of l i b e r a l a n a l g e s i a o f t e n brought them i n c o n f l i c t with medical treatment g o a l s . The next t r a n s c r i p t p o r t r a y s t h i s c o n f l i c t . P4: Geez, I get so-o mad at t h a t , and the burn p a t i e n t s , hey, I give 80 mgm morphine when I gi v e a burn bath, and they're y e l l i n g at me cuz the press u r e ' s f a l l i n g down, and I say, f i n e , put them on something to keep the pre s s u r e , I mean i t ' l l come back up again, the p a t i e n t ' s f i n e . I r e a l l y b e l i e v e that people should be, I mean i f they're intubated and they're v e n t i l a t e d and we are not going to extubate them, so what i f he's not t r i g g e r i n g that damn v e n t i l a t o r , l e t him out of h i s 169 misery. There's no, th e r e ' s nothing, I hate seeing somebody t r y i n g to scream around the ETT [Endo-Tracheal Tube], and I've, you know, I j u s t grab them and p u l l them i n and I say look at t h i s , and I j u s t give them more and, you know, i t ' s l i k e they order l i k e 5-10 of morphine or 2-4 morphine prn, w e l l I j u s t , I take i t r i g h t l i t e r a l l y every u n i t apart and I ' l l c h a r t i t that way, even though I've given 10 at a time, I mean, I, t h a t ' s the way, I don't know, I j u s t don't l i k e , we've had a l o t of arguments about morphine and a t i v a n and V a l i u m and how to give i t and I put myself i n that s i t u a t i o n , I'd l i k e to be i n never-never l a n d , thank you very much. The t r a n s c r i p t from P4 a l s o p o r t r a y s the e t h i c a l dilemma she experiences between her duty to her p a t i e n t s to p r o t e c t them from p a i n , and her o b l i g a t i o n to the p h y s i c i a n s to c a r r y out a treatment regime. Tempering nurses' accounts that l i b e r a l a n a l g e s i a enhanced t h e i r focus on p a t i e n t comfort were some expressions that too much a n a l g e s i a might i n t e r f e r e with nurses' a b i l i t i e s to assess t h e i r p a t i e n t s . The next t r a n s c r i p t g i v e s evidence of t h i s concern: P3: But, i t ' s d i f f i c u l t , you j u s t want to, because so many people are sedated a l i t t l e b i t and 170 sometimes a l o t i n I n t e n s i v e Care, you expect people to be not t h i n k i n g about s t u f f and even when someone's drowsy and most of the time her eyes are c l o s e d , i t ' s r e a l l y , I l i k e to wake people up as much as they can be and f i n d out how much pain they've got, how d i f f i c u l t t h e i r s i t u a t i o n i s , and then s t a r t again, I mean, l i k e almost every s h i f t , to see how comfortable they can be. In t h i s e x c e r p t , P 3 continued to b e l i e v e that a n a l g e s i a was important, but provided p a t i e n t s with the o p p o r t u n i t y to "wake up" to f i n d out "how d i f f i c u l t " t h e i r s i t u a t i o n s were. A second i n f l u e n c e on nurses' focus on p a t i e n t comfort was nurses' i n a b i l i t y to communicate with most of t h e i r p a t i e n t s . The r e s u l t a n t l a c k of feedback from p a t i e n t s meant that nurses d e s c r i b e d t h e i r d i f f i c u l t y i n t r y i n g to imagine the p a t i e n t as a person. To i l l u s t r a t e : P 6 : N a r c o t i z e d i s one aspect of i t but a l o t of times with the i l l n e s s e s that we see them with i n the u n i t , they are very n e u r o l o g i c a l l y depressed, whether they have some metabolic d i s e a s e process or whether a head i n j u r y , and you r e a l l y don't get to know them at a l l because they j u s t l a y there l i k e a lump, or they are very confused, even i f the 171 p a t i e n t i s t o t a l l y with i t and o r i e n t e d which r a r e l y do we ever see them l i k e t h a t , but even i f they were, then you can't get to know the p a t i e n t because f o r one t h i n g they have the tubes i n t h e i r mouth, the endotracheal tube, so they can't communicate, they're very f r u s t r a t e d with t h e i r i l l n e s s i f they happen to be awake so that they, oftentimes the p a t i e n t w i l l p r o j e c t t h e i r anger and fear and e v e r y t h i n g , t h e y ' l l l a s h out at the nurses, so sometimes you get the impression of t h i s i n d i v i d u a l being a t e r r i b l y f o u l o l d person when i n r e a l i t y they may be a b s o l u t e l y the g r e a t e s t t h i n g s i n c e s l i c e d bread. Not knowing the p a t i e n t as a person was d e s c r i b e d by nurses as making i t more d i f f i c u l t f o r them to i n d i v i d u a l i z e t h e i r c a r e . A f u r t h e r r a m i f i c a t i o n of not knowing the p a t i e n t as a person i s presented i n the next t r a n s c r i p t e x c e r p t : P3: I always f e e l l i k e t h a t ' s the i s s u e , that t h ere's a l o t that you do with the p a t i e n t i n ICU to prepare f o r t h e i r own death, but i t ' s a d i f f e r e n t k i n d , i t ' s a one-way c o n v e r s a t i o n o f t e n , and touch and comfort and t a l k i n g about i t but i n a one-way s i t u a t i o n i t ' s d i f f i c u l t to deal with, I t h i n k , i f someone i s d y i n g . I t h i n k that o f t e n 172 even i f that person can p o s s i b l y hear i t ' s a l o t e a s i e r to speak to the r e l a t i v e s and allow y o u r s e l f with them because you have to prepare f o r i t as wel l at t h i s time. Is So the s t a f f themselves have to prepare f o r i t . P3: Yes, i n a way. Is By a l l y i n g with the f a m i l y , that h e l p s . P3: That's r i g h t . . . A n o t i o n that arose from P3 and one other p a r t i c i p a n t was that the i n a b i l i t y to know t h e i r p a t i e n t s as persons made i t d i f f i c u l t f o r nurses to prepare f o r the p a t i e n t ' s impending death. Most p a r t i c i p a n t s i n d i c a t e d that they depended on f a m i l y members to help them get to know t h e i r p a t i e n t s as persons. Focus on Support of the Family. A second, p a r a l l e l , s h i f t of focus was towards support "of the fa m i l y . T h i s focus was emphasized r e p e a t e d l y through the t r a n s c r i p t s with every p a r t i c i p a n t . To i l l u s t r a t e : P i s And c e r t a i n l y I know that i f I was going to be on a l l week I'd say, " w e l l , I ' l l have that person again", because I t h i n k i t ' s . . . and I think even though the s i t u a t i o n i s somewhat depr e s s i n g I think a r e a l l y good rapport with the f a m i l y can make up f o r an awful l o t . And you know 173 I t h i n k t h a t c a n make y o u f e e l t h a t y o u a r e d o i n g s o m e t h i n g , i f y o u ' r e n o t d o i n g t o o m u ch p h y s i c a l l y f o r t h a t p e r s o n , t h a t t h e y ' r e n o t g o i n g a n y w h e r e . I s So e v e n i f y o u d o n ' t s e e t h e p a t i e n t g o i n g s o m e w h e r e , y o u s e e t h a t y o u c a n h e l p t h e f a m i l y s o m e w h a t . PI: Y e s , i f y o u c a n b e o f h e l p t o t h e f a m i l y , a n d I t h i n k a s t h e p r i m a r y c a r e g i v e r y o u c a n b e v e r y i m p o r t a n t t o t h e f a m i l y a n d v e r y o f t e n t h e d o c t o r s a r e v e r y v e r y r u s h e d a n d t h e r e a l o t o f d i f f e r e n t d o c t o r s , i n t e r n s , r e s i d e n t s , c o n s u l t a n t s a r o u n d a n d I t h i n k t h e y r e a l l y w a n t o n e p e r s o n t o b e a b l e t o t a l k t o t h e m a n d g e t c o n s i s t e n t a n s w e r s , y o u k n o w , a t r u s t f r o m . I k n o w t h a t c e r t a i n l y i n t h e p e d i a t r i c s e t t i n g t h a t t h e y r e a l l y t a k e , t h e y r e a l l y s o r t o f s e e m t o l a t c h o n t o o n e n u r s e a s t h e y s a y , i n r e a l l y s t r e s s e d s i t u a t i o n s , I t h i n k t h e y t a k e g r e a t c o m f o r t f r o m g a i n i n g t r u s t i n o n e p e r s o n a n d h a v i n g t h a t p e r s o n l o o k a f t e r t h e i r c h i l d . I s R i g h t . PI: B e c a u s e i t i s q u i t e a n e l e m e n t o f t r u s t l e a v i n g s o m e o n e y o u r e a l l y l o v e i n a p e r s o n ' s , a n I C U ' s , h a n d s f o r 24 h o u r s , a n d y o u ' v e g o t t o f e e l r e a l l y g o o d a b o u t i t . A n d make t h e c o n c l u s i o n s 174 that they can t r u s t you and that they can r e l a t e to you, t a l k to you. I: And so you f e l t l i k e , when you were i n those s i t u a t i o n s , you had more of a sense of purpose being with the f a m i l y . PI: Yeah, I t h i n k you do. And even i f they d i e , then you s t i l l have a sense of completeness, that you've been able to s o r t of go through the process with them, and be there at the end. P 5 : . . . you know, I j u s t , the f a m i l y p l a y s a r e a l l y important part with me because I j u s t , I've never experienced a f a m i l y member of mine dying and I j u s t , I don't know what i t would be l i k e although I've had f r i e n d s that t h e i r f a m i l y members have passed away. But the p a t i e n t r e a l l y sometimes never e n t e r s my mind, who has d i e d , i t ' s more the f a m i l y member that i s i n my mind, and a l o t of times, w e l l I l i e d probably the f i r s t time when I s a i d I hadn't r e a l l y brought my work home, I d i d once or twice with a l a d y that kept coming i n , we • had her husband i n f o r s i x months and [he] had continued to d e t e r i o r a t e and f i n a l l y passed away and of course she'd s i t at h i s bedside f o r 8 hours and we j u s t c o uldn't get her away and s o c i a l 175 s e r v i c e s came i n and the whole b i t . And he d i e d , and you know, I thin k she was j u s t a l l c r i e d out and I'm sure everyone of us j u s t sat and kinda went "ohhh" and I thought of her f o r a good many n i g h t s a f t e r because that was a l l her l i f e the l a s t s i x months, that was a l l she geared h e r s e l f f o r , and so, i t ' s more f a m i l y members I'd say that I f e e l f o r than the p a t i e n t s . I : Yeah. That's a c t u a l l y been coming up a great d e a l . P 5 : Yeah. I t ' s j u s t so very hard to d e a l with and they're so s t r e s s e d out that they j u s t , you know, you j u s t , even when you get medical f a m i l y members that come i n and are so out of tune, we had a [ p a t i e n t ] whose f a t h e r was a doctor and was completely o b l i v i o u s to what was going on. He had no, j u s t as though, as though he was a mechanic, l i k e he'd never been i n medicine. I : So you can't make assumptions j u s t because of h i s background? P 5 : No. So again I would c e r t a i n l y say that i t ' s the f a m i l y that would be my concern. Most p a r t i c i p a n t s d e s c r i b e d a sense of purpose, or completeness, when they f e l t they were able to focus on the f a m i l y . The statement from P5 that " i t ' s the 176 f a m i l y that would be my concern" p o i n t s out the s t r e n g t h of t h i s s h i f t of focus as nurses attempted to f i n d new meanings. P a r t i c i p a n t s i n t h i s study emphasized t h e i r focus on the f a m i l y unanimously i n terms of support. The next t r a n s c r i p t from P6 d e s c r i b e s her n o t i o n of support of f a m i l y members, and i s congruent with other p a r t i c i p a n t s ' d e s c r i p t i o n s : I: I t h i n k , j u s t f o l l o w i n g along your t r a i n of thought there then, the other area that I wanted to explore before I got i n t o my o v e r a l l i n t e r p r e t a t i o n s was that you r e a l l y , I t h i n k , put a strong emphasis on, that the f a m i l y r e a l l y do r e l y on you f o r emotional support. P6: Very much, very much . . . . E v e r y t h i n g , they need e v e r y t h i n g . They need, again i t has to do with the one i n d i v i d u a l , and when I'm t a l k i n g about the i n d i v i d u a l i n t h i s case I'm meaning fa m i l y , again the amount of support that they r e q u i r e again i s dependent upon what t h e i r coping mechanisms are and how they're to d e a l with i t and • a l s o on what t h e i r past experience i s , have been, to help them through t h i s , but g e n e r a l l y f a m i l i e s depend on you f o r e v e r y t h i n g , a b s o l u t e l y e v e r y t h i n g , emotional support, i n f o r m a t i o n and 177 c l a r i f i c a t i o n of what the doctor has t o l d them, i f they happen to have t o l d them .anything at a l l , l o t s of anatomy and p h y s i o l o g y , b a s i c anatomy and phy s i o l o g y , s t a t i s t i c s on what probable outcomes are, they a l s o r e l y on you, a c t u a l l y they don't r e l y on you but you f i n d y o u r s e l f almost i n a mother or a parent type of r o l e , s e t t i n g up r u l e s and r e g u l a t i o n s , some f a m i l i e s they j u s t , you can see them, they're d e s t r o y i n g themselves because a l l they're doing i s hanging around the u n i t a l l the time, they're not e a t i n g , and you see the f a m i l y dynamics i n some cases j u s t t o t a l l y f a l l apart and you have to s i t down with them and say, Okay, you know, you've g o t t a go home, you've g o t t a have a shower, you've g o t t a have something to eat and I'm not l e t t i n g you i n u n t i l 2 o ' c l o c k , and i f I look out there and you're not and you're s t i l l t h e r e , then you're not gonna be l e t i n u n t i l 3 o ' c l o c k , so they're, they d e f i n i t e l y need l i m i t a t i o n s , and I'm not t a l k i n g about a l l f a m i l i e s , a l o t of the f a m i l i e s are, and i n i t i a l l y they balk at i t , I mean as any teenager would balk at i t , but then they come back and I've gotten numerous hugs from saying thanks, you knew e x a c t l y what I needed, and they f e e l 100% b e t t e r because, and I found that I would, 178 I always used to t e l l them, the ones that were l i k e t h a t , i s that I have s t e e l - t o e d boots and i f need be I ' l l give you a s w i f t k i c k , and because, oftentimes i t was i n f a m i l i e s who you knew th a t the p a t i e n t was going to d i e , you j u s t knew i t , and you knew that they needed e v e r y t h i n g i n t h e i r inner s e l f to cope with i t and you knew, I knew that i f I d i d n ' t get them, make sure that they were r e s t e d , i f I d i d n ' t make sure that they were e a t i n g , that they were j u s t not going to be able to cope with the s i t u a t i o n , with the i n e v i t a b l e s i t u a t i o n , and the nurses r o l e a l s o i s to maintain a sense of r e a l i t y . Support of f a m i l i e s , then, meant h e l p i n g them to know what to expect and h e l p i n g them to care f o r themselves. Nurses' focus on h e l p i n g the f a m i l y to know what to expect and h e l p i n g them to care f o r themselves can be seen to be inherent i n nurses' notio n s of themselves as advocates f o r the f a m i l y . Support a l s o meant h e l p i n g f a m i l y members to prepare f o r the p a t i e n t ' s eventual death, i n p a r t i c u l a r h e l p i n g f a m i l y members to de a l with t h e i r hope. The previous t r a n s c r i p t from P6 c o n t i n u e s : P 6 : You have to feed them hope, sometimes when ther e ' s not any hope, but feed them j u s t a l i t t l e 179 t i n y b i t of hope j u s t so they have something to grasp onto u n t i l i t ' s time f o r you to kind of s t a r t b r i n g i n g i t down because a l o t of people can't accept the f a c t that the p a t i e n t i s going to d i e u n t i l the r i g h t time, so you j u s t have to feed them a l i t t l e b i t of hope u n t i l you see that t h ey're ready to get the i n f o r m a t i o n and f i n d out what the i n e v i t a b l e outcome i s going to be and then you can s t a r t g e t t i n g them through. I: So i t ' s a r e a l l y , i t ' s a process that you have to r e a l l y judge c a r e f u l l y over time as you watch them? P 6 : Yeah. The m a j o r i t y of p a r t i c i p a n t s emphasized a process of h e l p i n g the f a m i l y with a here and now r e a l i t y , and not b o l s t e r i n g what nurses saw as f a l s e hope. To i l l u s t r a t e : Is So i t was hard to see the parents not knowing what they faced i n the f u t u r e and that you f e l t you had a b e t t e r idea of what that might be than they d i d p o s s i b l y . Pis Yes. I t h i n k a l o t of the times u n t i l you've been i n a h o s p i t a l , most people haven't seen comatose or unconscious people and they have very l i t t l e n o t i o n , they haven't had personal experience 180 with a handicapped person, they have no id e a , they s o r t of have t h i s fantasy that these people are suddenly going to wake up and they are j u s t going to be the way they were b e f o r e . And yet we know that that i s n ' t so, but you can't d e s t r o y t h e i r d e n i a l at that p o i n t and you can't j u s t d e s t r o y that hope e i t h e r . You j u s t s o r t of have to do nothing, even though i t ' s j u s t a matter of time. They w i l l be g r a d u a l l y faced with the r e a l i t y . I: Did that f e e l l i k e t h a t was a d i f f i c u l t p o s i t i o n to be in? PI: I think i s was hard i n that you're . . . you know w e l l they'd say, "when are they going to wake up, when are we going to see him open h i s eyes" and whatever. You d i d n ' t want to r e i n f o r c e t h e i r d e n i a l and say, "Oh w e l l , he i s going to wake up and he i s going to be f i n e " , but at the same time you knew t h a t ' s very important f o r them at that p o i n t i n time and to completely d e s t r o y i t . . . so I t h i n k , I know the route that I would choose would be you know not to r e a l l y r e i n f o r c e those r e a l l y o p t i m i s t i c d e c i s i o n s and j u s t say, "well i t ' s j u s t going to be a day by day process and w e ' l l j u s t have to see what he's going to r e g a i n s l o w l y " , which f u n c t i o n , and e x p l a i n i f any f u n c t i o n comes 181 back or you know i f he's beginning to withdraw to pain or he's beginning to do t h i s and t h a t when we check him. I think j u s t s o r t of c o n t i n u a l l y j u s t d w e l l i n g i n t o the f a c t u a l examinations of the moment. P4: Well, you know, they're always, they phone and they ask how are they doing and they're always, you know, at l e a s t f i v e times a day and, you know, they're always v i s i t i n g q u i t e o f t e n and t h a t ' s f i n e but t h e r e ' s always, you know, How are they doing, i s there any improvement, and the t h i n g that I f i n d hard i s I, j u s t to say that maybe something has improved, and a l l of a sudden, my god, they j u s t p u l l on t h a t , they grasp on that and then i t ' s so d e v a s t a t i n g i f something happens. So a l o t of times I f i n d t h at even though he may have improved a l i t t l e b i t , I j u s t s o r t of p l a y i t down and I don't even say, you know, they're going through such ups and downs anyways that . . . When i t ' s hard i s when they have improved a l i t t l e b i t or sometimes you know, w e l l you've seen i t too, I mean, some p a t i e n t i s on death's door and a l l of a sudden they improve and you know i t ' s j u s t the f i n a l b u r s t before the c r a s h . 182 I: That's r i g h t , yeah, that's very true. P4: And that's when I find i t r e a l l y hard to t e l l them, "Yeah, they have improved", but how do you say, "But they probably, something i s gonna happen." But I just, I sort of say b a s i c a l l y , "Yeah, they have improved but anything s t i l l could happen, they s t i l l could d ie". Support of families, then, meant focusing on r e a l i t y to help prepare them for their loved one's death. Focusing on r e a l i t y to prepare family members for the patient's impending death i s congruent with notions of support in the nursing l i t e r a t u r e . Mishel and Braden (1987) state that "a major function of s o c i a l support i s to provide the opportunity to the person to c l a r i f y his or her situ a t i o n through discussion and interaction with others" (p. 55). Nurses' descriptions of "feeding family members a l i t t l e b i t of hope u n t i l you see that they are ready", and "playing down" temporary improvements in the patients' condition were seen as attempts to help family members c l a r i f y t h e i r s i t u a t i o n . The statement from PI that "you can't destroy their denial at that point and you can't just destroy that hope either" affirms Gadow's (1985) position that "the truth cannot be presented in a 'finished' form to patients, but requires t h e i r 183 p a r t i c i p a t i o n i n c o n s t i t u t i n g i t . . ." (p. 38). The focus on support of the f a m i l y d e s c r i b e d by nurses i n t h i s study i l l u s t r a t e s that nurses were s e n s i t i v e to the need to l i s t e n to and i n v o l v e the f a m i l y i n the c o n s t r u c t i o n of t r u t h , or r e a l i t y . One p a r t i c i p a n t o f f e r e d the f o l l o w i n g e l a b o r a t i o n on her focus on support of f a m i l i e s i n r e l a t i o n to hope: I : I t h i n k i n speaking of i t being d i f f i c u l t you s a i d t h a t , i t ' s d i f f i c u l t because you need to approach people and give them a balanced p i c t u r e that g i v e s them room f o r hope but a l s o an understanding of the s e r i o u s n e s s so they can decide and come back and j u s t engage them i n " t h i s i s what's happening", . . . I guess maybe my q u e s t i o n i s , can you t e l l me more about what that "balanced p i c t u r e " i s about? P3: The balance of hope on one s i d e and . . . I : Seriousness on the o t h e r . P 3 : Yeah. I t ' s d i f f i c u l t because i n some ways there i s no hope, f o r t h i s s i t u a t i o n to go any f u r t h e r and . . . but people do go on, and s o r t of t r y i n g to s u b s t i t u t e t h i n g s that are j u s t as important f o r that person, i t ' s d i f f i c u l t to t a l k about that as a balance but, I b e l i e v e i t ' s our 184 nature to s u b s t i t u t e t h i n g s that are important and as one bleeds something e l s e has to happen, and t h a t ' s where hope j u s t comes and s o r t of takes care of us. Is Hope i s the t h i n g that j u s t balances i t ? • • • • P3: Hope f o r j u s t that we have to go on and something e l s e w i l l help us out. To summarize, P3 i d e n t i f i e d two forms of hope as she supported f a m i l i e s ; hope that the f a m i l y members would f i n d t h e i r way to c a r r y on a f t e r t h e i r loved one was gone as w e l l as hope that the p a t i e n t might be b e t t e r . The l a t t e r form of hope was viewed by most nurses as something to be handled c a r e f u l l y ; not to be i n f l a t e d , but a l s o not to be taken away. Hope has been d e s c r i b e d as being g e n e r a t i v e of a c t i o n (Marcel, 1967). As such, hope has become acknowledged as necessary f o r i n d i v i d u a l s to cope with l i v i n g or dying (Dubree & Vogelpohl, 1980; Hickey, 1986; Lange, 1978; McGee, 1984; Rideout & Montemuro, 1986; Roberts, 1978; Schneider, 1980; Stoner & Keampfer, 1985; Wright & Shontz, 1968). Hence nurses' statements i n t h i s study that hope that the p a t i e n t might get b e t t e r should not be taken away was,important in t h e i r focus on support of f a m i l y members. Hope that 185 f a m i l y members would f i n d t h e i r way to c a r r y on a f t e r t h e i r loved one was gone d e p i c t s a broader n o t i o n of hope. T h i s broader n o t i o n of hope i s rooted i n e x i s t e n t i a l i s m , and i m p l i e s that the i n d i v i d u a l can hope to f i n d some meaning, or purpose (Hickey, 1986; M i l l e r , 1985; T a y l o r & Gideon, 1982; V a i l l o t , 1970). As d e s c r i b e d by P3, t h i s form of hope was "hope f o r j u s t that we have to go on and something e l s e w i l l help us out". I n f l u e n c e s on Nurses' Focus on Support of the  Family. In d e s c r i b i n g t h e i r experiences s u p p o r t i n g the f a m i l y members of p a t i e n t s who were dying i n c r i t i c a l care s e t t i n g s , nurses spoke of four major i n f l u e n c e s . These i n c l u d e d the i n f l u e n c e s of nurses' development of i n c r e a s i n g competence i n t h e i r n u r s i n g p r a c t i c e , the c u l t u r a l background of the f a m i l y , nurses' workload i n the p a t i e n t care s i t u a t i o n , as w e l l as the i n f l u e n c e of nurses' p e r c e p t i o n s of support from o t h e r s . S h i f t i n g the focus to the f a m i l y was d e s c r i b e d by most nurses as happening when they developed more t e c h n o l o g i c a l e x p e r t i s e as w e l l as more experience and confidence i n d e a l i n g with p a t i e n t s and f a m i l i e s . In other words, t h i s happened as nurses developed i n c r e a s i n g competence i n t h e i r n u r s i n g p r a c t i c e . The next two t r a n s c r i p t s d e s c r i b e how P2 and P3 saw t h i s 186 focus developing over time i n t h e i r c a r e e r as c r i t i c a l care nurses: P2: But j u s t spending, I a c t u a l l y spent the odd day with the f a m i l y but I spent almost the e n t i r e evening, the evening that she d i e d with her, [f a m i l y member] and you know j u s t t a l k i n g to her and h e l p i n g her to get over these t h i n g s and her husband was j u s t an absolute gem through the whole t h i n g , he was r e a l l y good, but I thin k that was r e a l l y , i t was d e f i n i t e l y hard to do and c e r t a i n l y when I was younger I c o u l d n ' t , i t was, I wouldn't have been able to go as f a r as I d i d with them and spend as much time as I co u l d because i t ' s j u s t , you know, i t ' s very emotional, i t ' s a r e a l l y d i f f i c u l t time and so, but i t ' s rewarding t o , you know, spend some time with them and be of some help to them because t h a t ' s r e a l l y what you're, who you're h e l p i n g at that p o i n t i s the f a m i l y , the immediate f a m i l y and being of some kind of support to them and o f f e r i n g e v e r y t h i n g that you can. I : That's very important. . . . f o r what reasons do you t h i n k i t would have been harder f o r you when you'd been younger? P2: Because I was l e s s , you know, as you're l e s s mature you're j u s t , I was c e r t a i n l y one t h a t , 187 anyway, that r e a l l y whipped out at t h i n g s and I i guess I j u s t c o uldn't handle i t , i t was j u s t too . . . strenuous, or maybe I was j u s t a f r a i d to c r y with people. I don't know, maybe that was pa r t of i t , I was always r e a l l y good at making c o f f e e and making sure that they were s i t t i n g i n the lounge and were comfortable and had, you know, and made sure that other people came to see them, l i k e t h i s would have been back i n the C a t h o l i c H o s p i t a l where we had the nuns would come around and stay with them or the p r i e s t or whatever, there was no problem with t h a t , they'd come anytime of the day or n i g h t , and, but we'd always make sure that they were comfortable and that the v i s i t i n g s i s t e r was c a l l e d and she would come i n and look a f t e r the emotional and s p i r i t u a l needs, but even to that degree i t was r e a l l y n i c e and I r e a l l y a p p r e c i a t e d that they were t h e r e . C e r t a i n l y when I was working in C i t y B that kind of support system was not there f o r the f a m i l y at a l l and h a l f the time they were s o r t of l e f t h a l f s i t t i n g out i n the h a l l , i n a very busy hallway, h a l f ignored, and there was j u s t no one there to go and t a l k to them h a l f the time. I : So i n that s i t u a t i o n , and with more experience under your b e l t , you found that you d i d 188 more of i t y o u r s e l f ? P2: Yeah, i f I had the time, c e r t a i n l y . P3: My fear of f a m i l y has d i m i n i s h e d r a d i c a l l y and at t h i s p o i n t when, w e l l l e t ' s see, i f a burn p a t i e n t comes i n and t h e r e ' s a person o u t s i d e I'm much more s e n s i t i v e to the immediacy of what they need, they need to be d e a l t with w i t h i n the hour, I won't, I w i l l probably d e s i g n a t e , i f I were working with a p a t i e n t and g e t t i n g him or her s e t t l e d i n bed and dressed and with IVs going and a n a l g e s i c s going, I would keep that f i r s t but I would be much more quick to i n v o l v e that f a m i l y , I would be much more quick to i n v o l v e the f a m i l y and to know t h a t t h i s person i s going to be, I guess the o v e r a l l p e r s p e c t i v e of c a r i n g , knowing who's long-term, who needs the most a s s i s t a n c e with g e t t i n g used to the s i t u a t i o n that I'd be much more quick to l e t t i n g that person come i n and knowing that what I say now i s going to have a l o t to do with the way she or he f e e l s about the s i t u a t i o n , so i t has developed over time, whereas before I would have avoided t h a t , avoided me t a l k i n g to that person, to know what kinds of t h i n g s you need to say and what kind of p o s i t i o n to take. I t h i n k you need r o l e models a 189 l o t . I: I was going to ask you what makes the d i f f e r e n c e , l i k e i s i t , l i k e that you know th a t now, i s that experience or t r a i n i n g , or are you saying r o l e models as one? P3: Yeah, w e l l j u s t as the f a m i l y does get used to the s i t u a t i o n and w i t h i n a week w i l l be coming in and not c r y i n g , but asking q u e s t i o n s about e l e c t r o l y t e s , so does the nurse get used to the f a c t , get used to the s i t u a t i o n of t a l k i n g to a g r i e v i n g person, and comfortable i n t h a t , and a c t u a l l y very i n v o l v e d and very g r a t e f u l to be able to do that so that sometimes what you r e a l l y want to do i s focus on the f a m i l y because i t ' s h o r r i b l e what's happened to t h i s person and you're f e e l i n g some of that and so to do something f o r the r e l a t i v e s i s r e a l l y h e l p f u l . A second i n f l u e n c e on nurses' focus on support of the f a m i l y was the c u l t u r a l background of the f a m i l y . Most nurses i n d i c a t e d that they found i t more d i f f i c u l t to support f a m i l y members from a d i f f e r e n t c u l t u r e . To i l l u s t r a t e : P3: I t ' s very hard i f the r e l a t i v e s of the person t h a t ' s dying i s , does not want to speak or seems very c o n f i d e n t about i t , i t ' s d i f f i c u l t to 190 approach someone's i n s e c u r i t i e s . I t can be d i f f i c u l t when there are c u l t u r a l d i f f e r e n c e s between s t a f f and r e l a t i v e s and not one of them comes out as spokesperson. The s t a f f w i l l have to choose someone and say t h i s i s , that w e ' l l have to choose t h i s spokesperson. And then i n a way the c u l t u r e seems to be very strong when i t pre s e n t s i t s e l f i n that way and the p e p a r a t i o n i s not, i t ' s something that the c u l t u r e has a l r e a d y spoken f o r that i t works i n t o i t , they a l r e a d y know what they're d e a l i n g with, and they a l r e a d y know how they need to g r i e v e and whether they need to be n o i s y or a l t o g e t h e r or very q u i e t or with the person. I: So i t ' s q u i t e a d i f f e r e n t process when there are d i f f e r e n t k i d s of c u l t u r a l v a r i a b l e s ? P3: Yes. I t h i n k t h a t ' s the i n t e r e s t i n g t h i n g , i s that i t ' s always d i f f e r e n t , always, always d i f f e r e n t . P 6 : . . . e s p e c i a l l y when you've got e t h n i c f a m i l i e s who l o v e , o f t e n t i m e s you end up, they put a b i g w a l l up. I : I t ' s harder with d i f f e r e n t e t h n i c f a m i l i e s , i s i t ? 191 P 6 : Yeah. J u s t as nurses found i t more d i f f i c u l t to understand the decision-making process of p a t i e n t s and f a m i l y members from a d i f f e r e n t c u l t u r e , then, they a l s o found i t more d i f f i c u l t to support f a m i l y members from a d i f f e r e n t c u l t u r e . Words such as " d i f f e r e n t " and "harder" were used to d e s c r i b e t h i s i n f l u e n c e . Nurses' experiences of workload i n the p a t i e n t care s e t t i n g s were that t h e i r involvement i n tasks sometimes d e t r a c t e d from t h e i r a b i l i t y to spend time with f a m i l i e s . T h i s i n f l u e n c e i s explored i n the next two t r a n s c r i p t e x c e r p t s : P2: [re l o o k i n g a f t e r an unstable p a t i e n t ] . . . and o b v i o u s l y you're r e a l l y busy and you need two people t h e r e , I mean, you can't do i t y o u r s e l f so even, i t keeps two nurses busy and t h e r e ' s no one to tend to the f a m i l y at a l l , and you can send the r e s i d e n t out to look a f t e r them or the p h y s i c i a n or whatever, but you have no idea what they've t o l d them and what they understand, so . . . I : I t ' s much more d i f f i c u l t to be able to do i t when the workload i s such that you don't have time to stop. P2: Yeah. 192 P 5 : And somehow i f you're with a r e a l l y busy p a t i e n t you j u s t don't have time to give f a m i l y members the s o r t of emotional support that you would l i k e and we've been busy and e s p e c i a l l y with the donor p a t i e n t t h a t ' s come i n , you're so busy t r y i n g to get them a l l up to a c e r t a i n l e v e l o f , I guess i d e a l i s m when they want to be t r a n s p l a n t e d that a l l they're hemodynamically what that team wants and t h e i r r e n a l s t a t u s i s what that d o c t o r wants and you've given a l l the a n t i b i o t i c s f o r what the o r t h o p e d i c s want f o r t h e i r bones and you're j u s t so wrapped up with doing a l l t h i s and f a m i l y members are s i t t i n g there and are l o o k i n g at a p a t i e n t that merely has a bump on h i s head or has no p h y s i c a l s i g n s of i n j u r y and they s t i l l see t h e i r heart b e a t i n g and t h e i r chest r i s i n g and yet you have no time to kind of say, you know, s i t down and explore t h e i r f e e l i n g s whatsoever. The l a t t e r t r a n s c r i p t i n p a r t i c u l a r p o i n t s out how nurses' workload i n the p a t i e n t - c a r e s i t u a t i o n presented them with an e t h i c a l dilemma between t h e i r o b l i g a t i o n s to the p h y s i c i a n s and i n s t i t u t i o n to implement the treatment regime and to the f a m i l y to help them "explore t h e i r f e e l i n g s " . Nurses' d e s c r i p t i o n s of the i n f l u e n c e of workload 193 on t h e i r a b i l i t y to focus on the f a m i l y r e c a l l s the emphasis on s i t u a t i o n a l c o n s t r a i n t s i l l u s t r a t e d i n the e t h i c a l , s t r e s s , and moral reasoning l i t e r a t u r e presented i n Chapter Two. Nurses' experiences i n t h i s study were that the s i t u a t i o n a l c o n s t r a i n t s of a demanding workload to implement treatment regimes hindered t h e i r focus on support of the f a m i l y . Nurses' p e r c e p t i o n s of support from o t h e r s as an i n f l u e n c e was emphasized r e p e a t e d l y i n s e v e r a l t r a n s c r i p t s . The next passage i n d i c a t e s t hat support i n c l u d e d r o l e modeling from peers that helped the nurse to develop her own s k i l l s i n d e a l i n g with f a m i l y members: P3: I t he l p s , i t r e a l l y helps when you see somebody e l s e speaking on your b e h a l f , say i f you're i n v o l v e d , but I mean another person j u s t come and s i t while you're working with the person o u t s i d e the window and t a l k i n g so you can l i s t e n and see, and l i s t e n to d i f f e r e n t s i t u a t i o n s , I think that a person i n charge i f nurses are new that they r e a l l y should have that o p p o r t u n i t y to s i t and l i s t e n to what a charge nurse, an experienced nurse, would say to r e l a t i v e s , because i t ' s very d i f f i c u l t to know how corny you can be or how b l u n t you should be, or how hopeful or hopeless 194 you should be, I thin k i t ' s a very d i f f i c u l t t h i n g , there's a r e a l a r t to i t and the r e ' s not that much focus i n your n u r s i n g t r a i n i n g on e x a c t l y what to say, so I j u s t t h i n k i t ' s something you need to develop, and experience i s d e f i n i t e l y a pa r t of i t , being a f r a i d f o r a while and then going through i t and r e a l i z i n g that you f e e l s a t i s f i e d t h a t you d i d i t , and then e v e n t u a l l y wanting to do i t y o u r s e l f because you could do a b e t t e r job maybe and because i t ' s your concern, i n c o r p o r a t i n g i t i n t o your concern. But a l s o r e a l i z i n g t h a t the f a m i l y i s very important to you and h e l p f u l i n s t e a d of a hindrance. Support a l s o meant r e c o g n i t i o n of the nurse's c o n t r i b u t i o n to the p a t i e n t care s i t u a t i o n and o f f e r i n g her r e s o u r c e s and c h o i c e s : PI: I think reinforcement from your peers i s r e a l l y important too. I f you've got an A s s i s t a n t Head Nurse t h a t ' s r e a l l y s u p p o r t i v e , or a Head Nurse who's saying, " w e l l , you're doing a great job", or you know, i s s e n s i t i v e to your needs, or "can you handle t h i s f a m i l y again or would you l i k e me to?" I thin k that element of ch o i c e i s r e a l l y good. And to say, "well how do you f e e l about having these people again?". . . I know i t ' s not 195 always a l l that easy to be able to give people c h o i c e s but I t h i n k i t r e a l l y h e l p s . And the bedside nurse c o u l d cope with those s i t u a t i o n s b e t t e r i f she f e e l s i t ' s her c h o i c e , i t ' s not being imposed on her. . . . I t h i n k the answer i s j u s t good teamwork and peer support. Support f o r nurses was a l s o d e s c r i b e d i n terms of an atmosphere of p o s i t i v e i n t e r p e r s o n a l r e l a t i o n s : P3: I think i t ' s a most dramatic t h i n g t h a t happens at work and the most important to me, i t seems to me that the reason that I am there and the reason why I can work i n a p l a c e l i k e that i s because of the coping q u a l i t i e s and one of them being that the r e l a t i o n s are conducted i n a r e a l l y p o s i t i v e way with people and that they can begin to accept s i t u a t i o n s and accept someone's death and begin to c r e a t e , i n a way that makes me f e e l comfortable about i t and because I've been h e l p f u l , that something p o s i t i v e w i l l come out of i t . Lack of support was d e s c r i b e d i n terms of other p r o f e s s i o n a l s being d i s t a n t , not understanding, not p r o v i d i n g the nurse with i n f o r m a t i o n , not understanding the nurse's p o s i t i o n , not communicating, and not f u n c t i o n i n g as a team. The next t r a n s c r i p t i l l u s t r a t e s l a c k of support: 196 I : When you s a i d no support from the upper echelon, by upper echelons d i d you mean people i n your s o r t of u n i t management, h o s p i t a l management, or . . . was there a group you had i n mind, or ? P4: W e l l , I was b a s i c a l l y r e f e r r i n g to the d o c t o r s because they're the ones with the f i n a l d e c i s i o n . Upper echelon, w e l l you c o u l d s t a r t going i n t o the n u r s i n g s u p e r v i s o r s . . . I mean, they don't have a c l u e what's going on anyway the way the system i s set up . . . and so I don't even take, whatever comes down from them and they don't understand what's going on anyway. I : So the people that you're most d i r e c t l y i n v o l v e d with, upper echelon wise, are the d o c t o r s then? P4: Yeah. Although n u r s i n g doesn't g i v e you support anyways, they wouldn't r e c o g n i z e , . . . I never r e a l l y t a l k e d to them, i t ' s j u s t a l o t of the t h i n g s that come down are j u s t , j u s t ignore i t , because we're not g e t t i n g the support from them anyhow. I : R i g h t . And I think I know what you mean by support but t h a t ' s another word I ' l l have to be c a r e f u l of i n t h i s . When you use the word 'support', what kinds of t h i n g s do you mean? P 4 : Umm, j u s t that they a l o t of times w i l l j u s t s o r t of you're t a l k i n g , w e l l the f a m i l y i s having a hard time d e a l i n g with t h i s , don't you t h i n k somebody should t a l k to the, t h i n g s should be more honest, why are we doing t h i s , and you get s o r t of a pat on the back, w e l l , i t ' s a l r i g h t , j u s t cope another few days longer and i t j u s t doesn't seem r i g h t , the mesh-knit working together that there should be a s i t u a t i o n l i k e t h a t . I: So support means working together and a l s o answering or d e a l i n g with q u e s t i o n s and concerns you r a i s e ? P4: Yeah. Or, even, a l o t of times I f i n d t h a t they've t a l k e d to the f a m i l y and then, God, you don't know where you're s t a n d i n g , you know. And then you ask the f a m i l y , w e l l , what d i d they say, and they s a i d , w e l l , they s o r t of s a i d t h i s but they're i n such shock anyways a l o t of times nothing s i n k s i n , but i t would be n i c e to know, i f you knew e x a c t l y what went on, even i f they don't t e l l you. Cuz I mean a l o t of times you can't be t a l k i n g to each other a l l the time but j u s t w r i t e the damn t h i n g down somewhere so you know where you're a t . I: R i g h t . So i t kind of r e v o l v e s around 198 communicating with each other too? P4: Yeah. There's a b i g l a c k of that as f a r as I can see. In summary of nurses' accounts of the i n f l u e n c e of support from others on t h e i r focus on support of the f a m i l y the f o l l o w i n g p o i n t s can be made: p o s i t i v e support was d e s c r i b e d i n terms of (a) r o l e modeling; (b) r e c o g n i t i o n of the nurses' c o n t r i b u t i o n to the p a t i e n t care s i t u a t i o n ; (c) o f f e r i n g nurses r e s o u r c e s and c h o i c e s ; and (d) an atmosphere of p o s i t i v e i n t e r p e r s o n a l r e l a t i o n s and teamwork. Lack of support was d e s c r i b e d i n terms o f : (a) others being d i s t a n t ; (b) not understanding; (c) not p r o v i d i n g the nurse with i n f o r m a t i o n ; (d) not understanding the nurse's p o s i t i o n ; (e) not communicating; and ( f ) not f u n c t i o n i n g as a team. Nurses' accounts of the i n f l u e n c e of support from others f u r t h e r v a l i d a t e s the importance of nurses' p e r c e p t i o n s of s i t u a t i o n a l c o n s t r a i n t s i n understanding how they cope with t h e i r e t h i c a l p e r s p e c t i v e s of s e n s e l e s s n e s s . I t has become i n c r e a s i n g l y r e c o g n i z e d in the n u r s i n g l i t e r a t u r e t h a t e f f o r t s towards communication and c o l l a b o r a t i o n are necessary f o r nurses to cope with d i f f i c u l t p a t i e n t care s i t u a t i o n s (Anderson, P i e r c e and R i n g l , 1983; Breu, 1983; Janken, 199 1974; Michaels, 1971). Nurses' experiences as r e p o r t e d in t h i s study were that such support was o f t e n not p r e s e n t . Focus on Personal Philosophy. A t h i r d , c o n c u r r e n t , focus i n nurses' attempts to f i n d new meanings was the expansion of each nurse's p e r s o n a l p h i l o s o p h y . One aspect of that expansion was e x p e r i e n c i n g and l e a r n i n g from people while s h a r i n g an i n t i m a t e l i f e event. To i l l u s t r a t e : PI: And I t h i n k that you're very p r i v i l e g e d to be with people at those p o i n t s and times, and i f you can handle i t y o u r s e l f and s o r t of be comfortable with i t , that you're very l u c k y . I think nurses can be very l u c k y i n those times because you're r e a l l y , i t ' s i n times of need that people reach out to you and you do develop r e a l l y i n t i m a t e bonds with people, and I t h i n k i t ' s that intimacy with people that makes i t a r e a l l y r i c h experience f o r y o u r s e l f as a nurse. Some p a r t i c i p a n t s emphasized the mutual s h a r i n g that they experienced with the f a m i l y i n terms of how i t a f f e c t e d t h e i r p e r s o n a l p h i l o s o p h y . P3: . . . an a l l i a n c e between a l l of us that nature does take i t s course and that we can't c o n t r o l e v e r y t h i n g and that we're a l l i n i t and 200 i t ' s , i s n ' t i t miraculous r e a l l y that t h i s i s another glimpse of the way t h i n g s work i n the world and we're g e t t i n g r e a l l y c l o s e to something r e a l l y s p e c i a l and r e a l l y hard i s going to happen, but very s p e c i a l because i t ' s so mysterious. I t h i n k t h a t ' s the neat t h i n g about t a l k i n g about i t because you're never r e a l l y q u a l i f i e d to t a l k about i t and I think you have to be r e a l l y i n t e r e s t e d i n communicating that t h e r e ' s a proper way, that you th i n k there i s , having a philosophy of i t because I don't th i n k you c o u l d ever w r i t e down that t h e r e ' s a way of d e a l i n g with death because we don't know anything about death r e a l l y . Expanding t h e i r p h i losophy to c r e a t e meaning out of c a r i n g f o r dying p a t i e n t s i n a c r i t i c a l care s e t t i n g was a l s o i n t e r t w i n e d with nurses' philosophy i n terms of t h e i r own l i f e . P7: . . . you r e a l l y do though, you s t a r t r e a l l y a p p r e c i a t i n g l i f e because everyone's d y i n g . Furthermore, p a r t i c i p a n t s i d e n t i f i e d t h a t the expansion of t h e i r philosophy changed over time. P a r t i c i p a n t s a t t r i b u t e d the change both to t h e i r experiences l o o k i n g a f t e r dying p a t i e n t s as w e l l as general l i f e e x p e r i e n c e s . P4: Yeah, w e l l I t h i n k i t j u s t makes you t h i n k a 201 l o t more, I mean you're j u s t s o r t of b r e e z i n g along when you f i r s t get out, at l e a s t I was, I mean, you're f i n a l l y out and working and making money, and f o r the f i r s t year a l l you're doing i s you're going to work and you may b i t c h about work, being s h o r t - s t a f f e d and l i k e t h a t , but, and t h i n g s d i d a f f e c t you, but t h a t ' s as f a r as i t went. I d i d n ' t have n e a r l y as much deep t h i n k i n g , but I don't know whether t h a t ' s j u s t because maybe as you get o l d e r you do that anyway, I don't know. But I f i n d that I'm, I do t h i n k a l o t about a l o t more now than I used t o , about where we're going with t h i s p a t i e n t • and I thin k being i n a c r i t i c a l care s e t t i n g i s probably, you know, pushed that on because o f , you know, how many p a t i e n t s don't make i t out, and why are we doing what we're doing? What e l s e , j u s t i n ge n e r a l , about e v e r y t h i n g , l i k e where are you going and about a l l the d i f f e r e n t r e l i g i o u s b e l i e f s and how people are so strong i n t h e i r b e l i e f s and I f i n d that there are c e r t a i n b e l i e f s I have I guess that are very strong but th e r e ' s so many v a r i a b l e s out there and I guess you see that i n n u r s i n g . . . The expansion of each nurses' personal p h i l o s o p h y thus i n v o l v e d an emphasis on l e a r n i n g about l i f e . Statements such as "you're very l u c k y " and " i s n ' t i t 202 miraculous r e a l l y " i n d i c a t e t hat a focus on p e r s o n a l philosophy was a source of s a t i s f a c t i o n f o r some nurses as they cared f o r p a t i e n t s who were e x p e r i e n c i n g p r o l o n g a t i o n of the process of dying i n a c r i t i c a l care s e t t i n g . I n f l u e n c e s on Nurses' Focus on Personal P h i l o s o p h y . Nurses d e s c r i b e d t h e i r focus on t h e i r p e r s o n a l philosophy as being i n f l u e n c e d by the amount of energy they f e l t they had f o r themselves. Energy f o r s e l f appeared to be a product of nurses' p e r c e p t i o n s of a v a r i e t y of i n f l u e n c e s , p a r t i c u l a r l y support from o t h e r s . Too l i t t l e energy was experienced by nurses i n terms of needing to achieve emotional d i s t a n c e f o r themselves. The next t r a n s c r i p t i l l u s t r a t e s t h i s need: P 6 : But a l o t of times i n a c r i t i c a l care s e t t i n g you r e a l l y don't want to know the person, you don't want to know the person, because we are exposed to so much death and you don't, i t ' s hard, i t i s hard, and i f you took e v e r y t h i n g to heart you'd crack, and over the years I've seen l o t s of people crack, and I thin k the onl y t h i n g t h a t ' s got me through and the onl y t h i n g t h a t ' s gotten a l o t of people through i s you develop a r e a l s i c k sense of humour, and you don't take t h i n g s as s e r i o u s l y as maybe a l o t of people, when i t comes to the 203 crunch, I mean you d e f i n i t e l y take t h i n g s s e r i o u s l y and you don't l e t someone's blood pressure hang around 60 and not get upset about i t , I mean you d e f i n i t e l y t r e a t i t , but you t r y not to take the deaths r i g h t to heart, and once you know the, once you r e a l l y s t a r t g e t t i n g to know the i n d i v i d u a l you s t a r t t o , sometimes s t a r t to i d e n t i f y with them, whether they look l i k e your f a t h e r , . . . or something reminds you of your husband, or something l i k e t h a t , and you don't, and i t makes t h i n g s r e a l l y d i f f i c u l t because then you s t a r t to i d e n t i f y with what the r e l a t i v e s must be f e e l i n g l i k e , and i t ' s j u s t too hard, so o f t e n t i m e s i t ' s , I always l i k e to know something about the p a t i e n t so that they'd be a l i t t l e b i t more comfortable but I d i d n ' t want to get to know the p a t i e n t because I j u s t , i t was too d i f f i c u l t . I: So i t ' s a r e a l l y f i n e balance then of having to stand back a b i t to p r o t e c t y o u r s e l f . P 6 : Yeah, yep. In f a c t I'd always, you know, I would always take myself as f a r as the f a m i l y or the p a t i e n t needed me to go and sometimes i t was at my own detriment, but I mean t h a t ' s probably the b i g g e s t crunch that they're going to have to go through i n t h e i r e n t i r e l i v e s , the f a m i l i e s and 204 a l s o the p a t i e n t s , I mean I was w i l l i n g to take myself that step and sometimes i t would take a l o t to p u l l myself back, you know, to recover a f t e r the p a t i e n t d i e d or whatever the s i t u a t i o n was, I mean, I would never be, i t wouldn't r u i n me f o r a month or anything, but I had you know s e v e r a l c r y i n g s p e l l s i n the back and you know, and then i t was over, you know, i t was over and done with. The need to achieve d i s t a n c e appears to have been a response by nurses to a s i g n i f i c a n t emotional involvement i n the care of the p a t i e n t and f a m i l y . P h i l o s o p h i c a l l y , some nurses expressed a need to stand back. The next two t r a n s c r i p t s continue to i l l u s t r a t e t h i s p h i l o s o p h y . I: . . . when you say that you f e e l t h a t you've become ' c a l l o u s ' , what does that mean? P 5 : Hardened, I guess. I'm there to d e l i v e r my d i r e c t p a t i e n t care and s o r t of when my 12 hours are up and, change s h i f t s , you know, give r e p o r t and I'm out and I've f o r g o t t e n the whole day s o r t o f , and I thin k when I f i r s t s t a r t e d o f f i n n u r s i n g on the burn u n i t I'd take someone home [think about them] and I'd t h i n k , "Holy geez, they're gonna have a long hard l i f e , and oh-h, many more s u r g e r i e s , too bad", and t h i s and t h a t , now i t ' s 7:30 r o l l s 205 around and I'm gone and I r e a l l y never g i v e p a t i e n t s another thought when I go home. . . . Is Is there an element of s e l f - p r o t e c t i o n i n that ? P 5 : I thin k so, yeah, you know I t h i n k i f I l e t my f e e l i n g s through I co u l d probably t h i n k , "Oh boy, that could've been me", or "that would be awful i f i t was my mother or my f a t h e r " . . . P7: I t ' s l i k e t h e r e ' s no d i g n i t y once they're admitted, i t ' s l i k e they're s t r i p p e d a p a r t , they're taken apart i n p i e c e s , and the f a m i l y comes i n and goes, "Well, you know, how's my son doing?" "Well, c a r d i o l o g y says t h i s , neuro says t h i s , r e n a l says t h i s " , and t h i s person i s l o o k i n g at you sa y i n g , "Well, how i s my son?" Well, i n d i f f e r e n t p a r t s , he's doing, d i f f e r e n t p a r t s are doing d i f f e r e n t t h i n g s but as a person he's going to d i e , he's no longer going to be a person. And I've been there f o r 2-1/2 years now and I'm r e c o g n i z i n g the f a c t that i t ' s time to get i n t o something e l s e because I'm s t a r t i n g t o , I used to have l o t s of compassion f o r these people that are dying and these f a m i l i e s and s t u f f l i k e t h i s and you j u s t , i t eats you out i f you l e t i t get to you, and I never thought that 206 I would turn i n t o one of those hardened ICU nurses, but I can see that I do i n some cases, that I've t o t a l l y , I w i l l t o t a l l y d i s a s s o c i a t e myself and I can give compassion to the f a m i l y and I can make the p a t i e n t look gorgeous and I can do t h a t , and then I can go home and have a p e r f e c t l y normal l i f e , and t h a t ' s not r i g h t . I t ' s very d i f f i c u l t to come home, I suppose i t ' s a s u r v i v a l mechanism that you have to do, but you know, i f you thought about, i f you're s i t t i n g here at the d i n i n g room t a b l e , you're having dinner with your b o y f r i e n d , husband, whatever, and you know, Well, yeah w e l l I had t h i s 23 year o l d guy who's dying, you know, I mean how to r u i n a d i n n e r . You j u s t can't d i s c u s s , you know, you can b r i n g c e r t a i n t h i n g s home, but you can't, or i t would r u i n your l i f e . You would a b s o l u t e l y , you wouldn't have a l i f e . And I don't know, I'm going through a r e a l phase where I can't decide whether t h a t ' s because I'm g e t t i n g burnt out, that I am a l l o w i n g myself to d i s a s s o c i a t e from the p a t i e n t , or whether i t ' s a s u r v i v a l mechanism and t h i s i s j u s t the way i t ' s g o t t a be, you know. And i t ' s , I have to decide what i s a c t u a l l y , you know, what I'm a c t u a l l y a f t e r and what i t ' s gonna do, but . . . 207 I : I t sounds l i k e you've thought a l o t about i t . P7: Oh, i t i s , i t ' s r e a l l y b o t h e r i n g me, r e a l l y b o t h e r i n g me because I used t o g e t , I s t i l l c r y a t work, I ' l l s t i l l c r y and s t u f f l i k e t h a t and g e t , • you know, some p a t i e n t s you r e l a t e t o and some you do n ' t . I t doesn't matter what age, i t ' s r e a l l y w e i r d . Energy f o r s e l f thus appears t o have been an im p o r t a n t i n f l u e n c e i n the p r o c e s s o f n u r s e s ' c o n s t r u c t i o n o f meaning. Too l i t t l e energy f o r s e l f was d e s c r i b e d i n terms o f the s e n s e l e s s n e s s o f c a r i n g f o r p a t i e n t s b e i n g "too h a r d " , f e e l i n g " c a l l o u s " , and " a l l o w i n g m y s e l f t o d i s s o c i a t e from the p a t i e n t . . . [as a s u r v i v a l mechanism.]" An i m p o r t a n t f e a t u r e o f the l a s t t r a n s c r i p t from P7 was her statement t h a t she was unable t o t a l k about her e t h i c a l p e r s p e c t i v e s w i t h o t h e r s . Most p a r t i c i p a n t s commented on not h a v i n g had the o p p o r t u n i t y t o d i s c u s s t h e i r e t h i c a l p e r s p e c t i v e s b e f o r e . PI spoke o f f e e l i n g l i k e a "lone v o i c e i n the w i l d e r n e s s " . T h i s l a c k o f o p p o r t u n i t y t o t a l k w i t h o t h e r s , be they peers or n u r s e s ' own f r i e n d s o r f a m i l y members, has been p r e v i o u s l y i d e n t i f i e d i n the N u r s i n g '74 (1974a & b) e t h i c a l s u r v e y as w e l l as A. D a v i s ' (1981) 208 work. Nurses' concerns about t h e i r l a c k of o p p o r t u n i t y to t a l k about t h e i r e t h i c a l p e r s p e c t i v e s f u r t h e r emphasizes the importance of nurses' p e r c e p t i o n s of support from o t h e r s . Nurses' d e s c r i p t i o n s of the i n f l u e n c e of the amount of energy they f e l t they had f o r themselves emphasizes the emotional involvement of nurses c a r i n g f o r dying p a t i e n t s reviewed i n Chapter Two (Davitz & D a v i t z , 1975; Fenton, 1987; F i e l d , 1984; Lamb, R., 1985; Wil k i n s o n , 1985). E x p r e s s i o n s of f e e l i n g " c a l l o u s " and " d i s s o c i a t i n g " are r e m i n i s c e n t of d e s c r i p t i o n s of burnout i n the nur s i n g l i t e r a t u r e (Maslach, 1982; Pines & Kanner, 1982; S t o r l i e , 1982). Evolving Meanings Given nurses' d e s c r i p t i o n s of f i n d i n g new meanings as o c c u r r i n g over time and s u b j e c t to a v a r i e t y of i n f l u e n c e s , nurses experienced a c i r c u l a r process of e v o l v i n g meanings. T h e r e f o r e , i n d i v i d u a l nurses' e t h i c a l p e r s p e c t i v e s on nu r s i n g dying p a t i e n t s i n c r i t i c a l care s e t t i n g s were not s t a t i c . The next two t r a n s c r i p t s d e p i c t how meanings evolved over time: P 6 : But I, but i t was almost seasonal, I c o u l d , l i k e I on l y c r i e d f o r a short p e r i o d of time, l i k e when I was going to work and l e t ' s say f o r four days or something l i k e t h a t , so i t ' s kind of an 209 i s o l a t e d i n c i d e n t , but I co u l d f e e l every s p r i n g and every f a l l there was something d i f f e r e n t and I j u s t found that I needed to get away f o r awhile and i t wasn't that I cou l d n ' t cope, I d i d n ' t f e e l t h a t I couldn't cope, and I f e l t t h a t I was s t i l l doing the same s o r t of performance, but I j u s t knew that I had to get away and i t was every s p r i n g and every f a l l , and I don't know how or why i t was then at a l l , so what I used to do i s I used to book my h o l i d a y s and I always used to book h o l i d a y s i n May. and September and I would, I could f e e l i t , maybe cuz I knew my h o l i d a y s were coming and I would j u s t f e e l i t coming on and the o n l y t h i n g that got me through was t h i n k i n g , " , you go on h o l i d a y s f o r a month i n May, you go on h o l i d a y s f o r some of the time i n September", and then I'd come back and I would be t o t a l l y r e f r e s h e d and I would j u s t keep on going and i t would be f i n e . PI: Yeah, and I think f i r s t l y that people, I think you go through d i f f e r e n t phases i n l i f e and I think that these t h i n g s come and go, i t ' s been i n t e r e s t i n g f o r me to s o r t of have d i f f e r e n t kinds of exposures over d i f f e r e n t times and I t h i n k when you f i r s t get back i n t o i t again i t ' s q u i t e , you 210 can s o r t of develop these coping mechanisms and so r t of ideas and you do f e e l pain and then g e t t i n g away from i t , I thin k I t o l d you when I'd been up in [the s u r g i c a l ICU] and I hadn't had a death f o r a while and then suddenly I was back i n ICU [general] f o r a s h i f t and there was t h i s r e a l l y sad, how a l l those f e e l i n g s of sadness came back again, so I thin k that p a t t e r n s can change w i t h i n people. Is I t h i n k t h a t ' s an important p o i n t . Pis I thi n k being away from i t f o r a while can kind o f , s o r t of i t gets pushed to the back of your mind and then when you're exposed again, i t was the same with the [ p a t i e n t i n general ICU], you know, i t j u s t suddenly a l l came back again, a l l those f e e l i n g s , and I had to s o r t of s i t down and thin k about i t a l l over again and s o r t of decide what i t was that was p a i n f u l and why I was f e e l i n g f r u s t r a t e d about t h i s p a r t i c u l a r s i t u a t i o n and so, I t h i n k i t can come and go, you know, and I t h i n k d i f f e r e n t l i f e s i t u a t i o n s c e r t a i n l y p l a y a p a r t . And you were saying t h a t , about the amount of s t r e s s , or the l a c k of support or whatever, i n your l i f e , and I see that as r e a l l y r e l e v a n t , I t h i n k , you know, whatever l i f e space you're i n i s r e a l l y 211 important . . . Nurses' experiences, then, were not that they always had the same meanings when nursing dying p a t i e n t s i n c r i t i c a l care s e t t i n g s . For example, P6 found that her meaning that she "couldn't cope" was "almost seasonal", and PI i d e n t i f i e d that moving back in t o an ICU s e t t i n g she had to face a meaning of "sadness" " a l l over again." The statements from P6 that she f e l t " t o t a l l y refreshed" coming back from h o l i d a y s , and from PI i n terms of "whatever l i f e space you're i n i s r e a l l y important" underline the importance of energy f o r s e l f i n the kinds of meanings that evolved. Summary Theme o f Senselessness Nurses' e t h i c a l p erspectives on nursing dying p a t i e n t s i n c r i t i c a l care s e t t i n g s centered around a theme of senselessness. Senselessness was described by nurses i n terms such as " f r u i t l e s s " , "going nowhere" and " s e l f - d e f e a t i n g " . Senselessness i l l u s t r a t e d the c o n f l i c t s experienced by nurses as they cared f o r p a t i e n t s undergoing prolongation of the process of dying, and was associated with f e e l i n g s of anger, f r u s t r a t i o n and powerlessness. The c o n f l i c t s experienced by nurses were comprised of multi p l e . 212 e t h i c a l dilemmas a r i s i n g out of the e t h i c a l problem of • p r o l o n g a t i o n of the process of d y i n g . Most of the dilemmas i d e n t i f i e d i n the nurses' d e s c r i p t i o n s were framed i n a c o n f l i c t between the nurses* o b l i g a t i o n to the p h y s i c i a n and i n s t i t u t i o n and her d u t i e s to the p a t i e n t and f a m i l y . The f e e l i n g s experienced by nurses probably r e f l e c t e d t h e i r responses to the m u l t i p l e e t h i c a l dilemmas they found themselves i n , as w e l l as to the dissonance ( F e s t i n g e r , 1957) i m p l i c i t i n t h e i r e x p e r i e n c e s . The theme of s e n s e l e s s n e s s was e x p l i c a t e d by nurses in terms of three major concerns. These concerns were: (a) a s e n s e l e s s decision-making process; (b) experiences of p a t i e n t s and f a m i l i e s t h at were seen by nurses as s e n s e l e s s ; and (c) a c t i v i t i e s nurses found themselves i n v o l v e d i n to implement treatment regimes • that were seen as s e n s e l e s s . A s e n s e l e s s decision-making process was emphasized r e p e a t e d l y through the t r a n s c r i p t s with every p a r t i c i p a n t , and was d e s c r i b e d i n terms of the process by which d e c i s i o n s were made, r a t h e r than the d e c i s i o n s per se. Most d e c i s i o n s d e s c r i b e d by nurses r e l a t e d to treatment abatement. Inadequate involvement of the p a t i e n t , inadequate involvement of the f a m i l y , inadequate involvement of the nurse, and fragmentary 213 team decision-making were a l l p a r t of a s e n s e l e s s decision-making p r o c e s s . Nurses d e s c r i b e d t h e i r e t h i c a l p e r s p e c t i v e s of a s e n s e l e s s decision-making process as being i n f l u e n c e d by the c u l t u r a l background of the p a t i e n t and f a m i l y , as w e l l as the l e g a l c l i m a t e of the p a t i e n t care s i t u a t i o n . In r e l a t i o n to these i n f l u e n c e s , nurses d e s c r i b e d t h e i r d i f f i c u l t y i n understanding f a m i l y members' decision-making i n the context of a v a r i e t y of c u l t u r a l i n f l u e n c e s . Nurses a l s o d e s c r i b e d an o v e r a l l u n c e r t a i n t y of t h e i r p o s i t i o n in the law as confounding t h e i r p e r s p e c t i v e s of an a l r e a d y s e n s e l e s s decision-making p r o c e s s . Nurses a l s o expressed concern that what was being experienced by p a t i e n t s and f a m i l i e s was s e n s e l e s s . A major f a c e t of nurses' e t h i c a l p e r s p e c t i v e s here was a concern about the l o s s of p a t i e n t d i g n i t y , i m p l i c i t i n which were concerns about the q u a l i t y of the p a t i e n t ' s l i f e and p a t i e n t s u f f e r i n g . Given p a t i e n t s i n c r i t i c a l care s e t t i n g s who are f r e q u e n t l y unconscious, the m a j o r i t y of emphasis on s u f f e r i n g i n the i n t e r v i e w s was in terms of f a m i l y s u f f e r i n g . Nurses d e s c r i b e d t h e i r e t h i c a l p e r s p e c t i v e s as being i n f l u e n c e d by the context of the p a t i e n t ' s l i f e h i s t o r y , and by nurses' p e r s o n a l i d e n t i f i c a t i o n with that l i f e h i s t o r y . The emotional impact of nurses' e t h i c a l p e r s p e c t i v e s of s e n s e l e s s n e s s 214 appeared to have been lessened i f the s i t u a t i o n was viewed to be the consequence of the p a t i e n t ' s own a c t i o n s . Most p a r t i c i p a n t s i n d i c a t e d that a s i t u a t i o n i n v o l v i n g an unexpected event that the p a t i e n t was not i n c o n t r o l of was p e r c e i v e d as e s p e c i a l l y s e n s e l e s s . Nurses' pe r s o n a l i d e n t i f i c a t i o n with the p a t i e n t ' s l i f e h i s t o r y a l s o accentuated the emotional impact of t h e i r e t h i c a l p e r s p e c t i v e s of s e n s e l e s s n e s s . A t h i r d concern d e s c r i b e d by nurses was that the a c t i v i t i e s they found themselves i n v o l v e d i n to implement the treatment regime were seen as s e n s e l e s s , p r i m a r i l y because the nurses d e f i n e d t h e i r p a t i e n t s as d y i n g . Nurses d e s c r i b e d t h e i r a c t i v i t i e s with p a t i e n t s in terms of " f r u i t l e s s " , " s e l f - d e f e a t i n g " , "going nowhere", "hopeless", or " n o n s e n s i c a l " . An important f e a t u r e of nurses' e t h i c a l p e r s p e c t i v e s i n terms of t h e i r a c t i v i t i e s was t h e i r l a c k of s a t i s f a c t i o n , and probable r o l e c o n f l i c t . I n f l u e n c i n g nurses' e t h i c a l p e r s p e c t i v e s was t h e i r l e n g t h of exposure to p a t i e n t s e x p e r i e n c i n g p r o l o n g a t i o n of the process of d y i n g . I n c r e a s i n g exposure meant l e s s emphasis on g a i n i n g competence i n b i o m e d i c a l t a s k s , and r e s u l t e d i n more acute p e r s p e c t i v e s of s e n s e l e s s n e s s . Finding New Meanings Nurses' e t h i c a l p e r s p e c t i v e s a l s o emphasized 215 nurses' attempts to cope with s e n s e l e s s n e s s . Coping with s e n s e l e s s n e s s meant that nurses attempted to f i n d new meanings by s h i f t i n g focus, or s h i f t i n g t h e i r focus of a c t i o n . S h i f t i n g focus i n c l u d e d : (a) s h i f t i n g focus from the implementation of treatment regimes to p a t i e n t comfort; (b) s h i f t i n g focus to support of the f a m i l y ; and (c) s h i f t i n g focus to nurses' own pers o n a l philosophy. S h i f t i n g focus from the implementation of treatment regimes to p a t i e n t comfort was d e s c r i b e d by nurses i n terms of "the o n l y t h i n g you can do i s j u s t t r y and make people comfortable f o r whatever time they have l e f t . " R e l i e f of s u f f e r i n g and promotion of p a t i e n t d i g n i t y were i m p l i c i t i n many nurses' accounts of t h e i r focus on p a t i e n t comfort. Nurses' accounts i n d i c a t e d that t h e i r focus on p a t i e n t comfort helped them to f i n d s a t i s f a c t i o n i n otherwise " s e l f - d e f e a t i n g " a c t i v i t i e s . I n f l u e n c e s on nurses' focus on p a t i e n t comfort i n c l u d e d nurses' use of a n a l g e s i a , and t h e i r i n a b i l i t y to communicate with most of t h e i r p a t i e n t s . The i n a b i l i t y to communicate was d e s c r i b e d as making i t more d i f f i c u l t f o r nurses to get to know t h e i r p a t i e n t s as persons. A second, p a r a l l e l , s h i f t of focus was towards support of the f a m i l y . T h i s focus was emphasized 216 r e p e a t e d l y through the t r a n s c r i p t s with every p a r t i c i p a n t . Most p a r t i c i p a n t s d e s c r i b e d a sense of purpose, or completeness when they f e l t they were able to focus on the f a m i l y . P a r t i c i p a n t s d e s c r i b e d t h e i r focus on the f a m i l y unanimously i n terms of support, or h e l p i n g f a m i l y members to know what to expect and he l p i n g them to care f o r themselves. Support a l s o meant h e l p i n g f a m i l y members to prepare f o r the p a t i e n t ' s eventual death. In p a r t i c u l a r , support meant h e l p i n g f a m i l y members to d e a l with t h e i r hope. I n f l u e n c e s on nurses' focus on support of the f a m i l y i n c l u d e d nurses' development of i n c r e a s i n g competence i n t h e i r n u r s i n g p r a c t i c e , which made them more comfortable with b i o m e d i c a l tasks and l e s s r e l u c t a n t to approach f a m i l y members. The c u l t u r a l background of the f a m i l y a l s o was an i n f l u e n c e i n that f a m i l i e s from a d i f f e r e n t c u l t u r e were o f t e n d e s c r i b e d by nurses as "more d i f f i c u l t " to provide support t o . An e x c e s s i v e workload i n the p a t i e n t care s i t u a t i o n meant that nurses c o u l d not always f i n d the time to support the f a m i l y . F i n a l l y , a major i n f l u e n c e on nurses' focus on support of the f a m i l y was nurses' p e r c e p t i o n s of support from o t h e r s . P o s i t i v e support was experienced i n terms of f a c i l i t a t i n g nurses' focus on support of the f a m i l y , while the converse was a l s o 217 t r u e . A t h i r d , concurrent focus i n nurses' attempts to f i n d new meanings was the expansion of each nurse's personal p h i l o s o p h y . One aspect of that expansion was e x p e r i e n c i n g and l e a r n i n g from people while s h a r i n g an intimate l i f e event. Expanding t h e i r p h i l o s o p h y to f i n d new meanings while c a r i n g f o r dying p a t i e n t s i n a c r i t i c a l care s e t t i n g was a l s o i n t e r t w i n e d with n u r s e s ' p h i l o s o p h i e s i n terms of t h e i r own l i f e . A focus on p e r s o n a l philosophy was a source of s a t i s f a c t i o n f o r some nurses as they cared f o r p a t i e n t s who were e x p e r i e n c i n g p r o l o n g a t i o n of the process of dying i n a c r i t i c a l care s e t t i n g . I n f l u e n c i n g nurses' focus on t h e i r p e r s o n a l philosophy was the amount of energy nurses f e l t they had f o r themselves. Energy f o r s e l f was c l o s e l y l i n k e d to p e r c e p t i o n s of support from o t h e r s . Too l i t t l e energy f o r s e l f was experienced by nurses i n terms of needing to achieve emotional d i s t a n c e . E v o l v i n g Meanings Nurses' e t h i c a l p e r s p e c t i v e s on n u r s i n g dying p a t i e n t s i n a c r i t i c a l care s e t t i n g centered around a theme of s e n s e l e s s n e s s and emphasized nurses' attempts to cope with s e n s e l e s s n e s s by f i n d i n g new meanings. New meanings were not s t a t i c , but o c c u r r e d over time 218 and were s u b j e c t to a v a r i e t y of i n f l u e n c e s . Energy f o r s e l f appeared to have been p a r t i c u l a r l y r e l e v a n t i n the q u a l i t a t i v e l y d i f f e r e n t kinds of meaning c o n s t r u c t e d by nurses at d i f f e r e n t p o i n t s i n t h e i r c a r e e r s . Nurses t h e r e f o r e experienced meanings t h a t c o n t i n u a l l y evolved as they nursed p a t i e n t s undergoing p r o l o n g a t i o n of the process of d y i n g . i CHAPTER FIVE: CONCLUSIONS, IMPLICATIONS AND RECOMMENDATIONS FOR FURTHER STUDY .Conclusions The c o n c e p t u a l i z a t i o n of the problem statement i n Chapter One of t h i s t h e s i s i n d i c a t e d that c r i t i c a l care nursing has developed as a n u r s i n g s p e c i a l t y f o r p a t i e n t s undergoing l i f e - t h r e a t e n i n g p h y s i o l o g i c a l c r i s e s , with a mandate to provide care to the whole p a t i e n t , but f i n d s i t s e l f o p e r a t i n g w i t h i n a system that has become fragmented and dehumanized. Of p a r t i c u l a r concern i n the a p p l i c a t i o n of technology w i t h i n t h i s h e a l t h - c a r e system i s the u n d e r l y i n g assumption of p a t i e n t death as f a i l u r e . As a r e s u l t , p r o l o n g a t i o n of the process of dying takes p l a c e f o r many p a t i e n t s i n c r i t i c a l care s e t t i n g s . P r o l o n g a t i o n of the process of dying was seen i n the l i t e r a t u r e as c r e a t i n g an e t h i c a l problem f o r nurses, with the i m p l i c i t assumption that nurses w i l l always f i n d p r o l o n g a t i o n of the process of dying c o n f l i c t i n g with t h e i r values of human autonomy and d i g n i t y . However, given a r e l a t i v e l a c k of e t h i c a l r e s e a r c h and c o n f l i c t i n g t h e o r i e s of moral reasoning, i t was argued that we cannot assume what i n d i v i d u a l nurses' e t h i c a l p e r s p e c t i v e s w i l l be. T h e r e f o r e , the 220 r e s e a r c h q u e s t i o n f o r t h i s t h e s i s was: "What are nurses' e t h i c a l p e r s p e c t i v e s on n u r s i n g dying p a t i e n t s i n a c r i t i c a l care s e t t i n g ? " Phenomenology was chosen as the methodological approach f o r the t h e s i s i n order to provide a f u l l and accurate d e s c r i p t i o n of i n d i v i d u a l nurses' e t h i c a l p e r s p e c t i v e s . In p a r t i c u l a r , i t was the i n v e s t i g a t o r ' s i n t e n t to uncover the "concrete, i d i o s y n c r a t i c , and c o n t e x t u a l " ( S u l l i v a n , 1977, p. 19). The r e s u l t s of t h i s study i n d i c a t e that nurses' e t h i c a l p e r s p e c t i v e s on nu r s i n g dying p a t i e n t s i n a c r i t i c a l care s e t t i n g centered around a theme of se n s e l e s s n e s s . Senselessness i l l u s t r a t e d the c o n f l i c t s experienced by nurses as they cared f o r p a t i e n t s , and was a s s o c i a t e d with f e e l i n g s of anger, f r u s t r a t i o n , and powerlessness. The c o n f l i c t s experienced by nurses were comprised of m u l t i p l e e t h i c a l dilemmas w i t h i n the o v e r a l l e t h i c a l problem of p r o l o n g a t i o n of the process of d y i n g . The r e s u l t s of t h i s study thus a f f i r m other nursing s t u d i e s i n i d e n t i f y i n g p r o l o n g a t i o n of the process of dying a s i g n i f i c a n t e t h i c a l problem (A. Davis, 1981; Fenton, 1987; Nursing '74, 1974a, 1974b). Nurses e x p l i c a t e d the theme of se n s e l e s s n e s s i n terms of three major concerns. These concerns i n c l u d e d : (a) a s e n s e l e s s decision-making p r o c e s s ; 221 (b) senselessness i n terms of what was being experienced by p a t i e n t s and f a m i l y members; and (c) s e n s e l e s s n e s s i n terms of the a c t i v i t i e s nurses found themselves i n v o l v e d i n to implement treatment regimes. Concurrent with nurses' e t h i c a l p e r s p e c t i v e s of senselessness were nurses' attempts to cope with t h e i r p e r s p e c t i v e s by f i n d i n g new meanings. F i n d i n g new meanings was d e s c r i b e d by nurses i n terms o f : (a) s h i f t i n g t h e i r focus to p a t i e n t comfort; (b) s h i f t i n g focus to support of the f a m i l y ; and (c) s h i f t i n g focus to t h e i r own personal philosophy. T h i s concurrent emphasis on s e n s e l e s s n e s s and coping i s s i m i l a r to Fenton's (1987) concurrent emphasis on nurses' e t h i c a l p e r c e p t i o n s and t h e i r attempts to cope with t h e i r p e r c e p t i o n s . The e x p l o r a t i o n w i t h i n t h i s study of coping i n terms of f i n d i n g meaning i s a l s o s i m i l a r to a study by Hutchinson (1984) of neonatal I.C.U. nurses. Hutchinson i d e n t i f i e d the c r e a t i o n of meaning as e s s e n t i a l f o r p r o f e s s i o n a l s u r v i v a l . T h i s study c e r t a i n l y supports that n o t i o n . Returning to the l i t e r a t u r e reviewed on moral reasoning, i t can be argued that nurses' moral c h o i c e s (e.g., l e t t i n g the p a t i e n t d i e without f u r t h e r treatment) were unable to be t r a n s l a t e d i n t o moral a c t i o n , r e s u l t i n g i n e t h i c a l p e r s p e c t i v e s of 222 s e n s e l e s s n e s s . Nurses coped by making d i f f e r e n t moral c h o i c e s (e.g., a s s i s t i n g the f a m i l y i n t h e i r g r i e f process) that were more amenable to moral a c t i o n . Nurses' attempts to f i n d new meanings thus c o n s t i t u t e d the implementation of a moral reasoning p r o c e s s . The c'ontextual nature of nurses' moral reasoning i s i l l u s t r a t e d i n t h i s study through nurses' d e s c r i p t i o n s of a v a r i e t y of i n f l u e n c e s on t h e i r e t h i c a l p e r s p e c t i v e s . These i n f l u e n c e s i n c l u d e such t h i n g s as the c u l t u r a l background of the p a t i e n t and f a m i l y , the l e g a l c l i m a t e of the p a t i e n t care s i t u a t i o n , nurses' development of i n c r e a s i n g competence i n t h e i r n u r s i n g p r a c t i c e , t h e i r workload i n the p a t i e n t care s e t t i n g , and t h e i r p e r c e p t i o n s of support from o t h e r s . These i n f l u e n c e s are congruent with some of the s i t u a t i o n a l c o n s t r a i n t s i l l u s t r a t e d i n moral reasoning s t u d i e s such as those by R. Lamb (1985), Ornery (1985), and W i l k i n s o n (1985). Nurses' moral reasoning was thus not a matter of simply a p p l y i n g u n i v e r s a l v a l u e s , but was a process that changed over time and was s u b j e c t to a v a r i e t y of i n f l u e n c e s . Of p a r t i c u l a r note i n t h i s study was the i n f l u e n c e of the amount of energy nurses f e l t they had f o r themselves on t h e i r focus on t h e i r p ersonal philosophy. Energy f o r s e l f appeared to have been 223 r e l a t e d to nurses' p e r c e p t i o n s of support from o t h e r s . Too l i t t l e energy was experienced by nurses i n terms of needing to achieve emotional d i s t a n c e f o r themselves. Nurses' e t h i c a l p e r s p e c t i v e s as d e s c r i b e d i n t h i s study t h e r e f o r e support the f i n d i n g s from other s t u d i e s (Davitz & D a v i t z , 1975; Fenton, 1987; F i e l d , 1984; Lamb, R., 1985; W i l k i n s o n , 1985) i n terms of the emotional involvement of nurses with t h e i r dying , p a t i e n t s . Furthermore, nurses' i d e n t i f i c a t i o n of s i t u a t i o n a l c o n s t r a i n t s and the m u l t i p l e e t h i c a l dilemmas they experienced r e c a l l the concerns expressed by Murphy (1983), and Y a r l i n g and McElmurray (1983), that nurses are not f r e e moral agents i n our h e a l t h care system. Statements from p a r t i c i p a n t s i n t h i s study such as " i t ' s r e a l l y b o t h e r i n g me" i n d i c a t e that nurses' i n a b i l i t y to f u n c t i o n as f r e e moral agents was a source of s i g n i f i c a n t moral d i s t r e s s (Wilkinson, 1985). I m p l i c a t i o n s Nursing Education E t h i c a l problems are r e c e i v i n g i n c r e a s i n g a t t e n t i o n in the n u r s i n g l i t e r a t u r e , and nurse educators are i n c r e a s i n g l y aware of the n e c e s s i t y to b e t t e r prepare nurses to deal with these kinds of problems ( R e i l l y , 1978; R e i l l y & Oermann, 1985). I t i s c l e a r from t h i s 224 study and ot h e r s that e t h i c a l problems such as p r o l o n g a t i o n of the process of dying are not i n f r e q u e n t , and may be a source of s i g n i f i c a n t moral d i s t r e s s to nurses. We t h e r e f o r e need to p l a c e more emphasis on the a f f e c t i v e domain of nu r s i n g education as we prepare beginning p r a c t i t i o n e r s i n n u r s i n g . However, w i t h i n the a f f e c t i v e domain of n u r s i n g education we need to use c a u t i o n i n implementing t h e o r i e s of moral reasoning that f a i l to f u l l y e x p l a i n nurses' moral behavior i n the context of s i t u a t i o n a l c o n s t r a i n t s . To c i t e Ornery (1983b), " [ c h o i c e ] of a model of moral development should not occur u n t i l the assumptions u n d e r l y i n g both the moral model and n u r s i n g framework have been i d e n t i f i e d and compared" (p. 14). C l e a r l y , we need f u r t h e r r e s e a r c h to s e l e c t an approach to moral reasoning that p r o v i d e s d i r e c t i o n to educate nurses f o r p r a c t i c e i n the ' r e a l world' of s i t u a t i o n a l c o n s t r a i n t s . I m p l i c a t i o n s of t h i s study f o r nu r s i n g education a l s o address how we are c u r r e n t l y p r e p a r i n g nurses f o r p r a c t i c e i n c l i n i c a l s p e c i a l t i e s such as c r i t i c a l care n u r s i n g . D e s c r i p t i o n s from nurses i n t h i s study i n d i c a t e that nurses s t r u g g l e d to help f a m i l y members deal with an o f t e n complex g r i e f p r o c e s s . Nurses made i t c l e a r that t h e i r a b i l i t y to focus on su p p o r t i n g the 225 f a m i l y gave them a sense of purpose as w e l l as a sense of s a t i s f a c t i o n . Given the c u r r e n t preponderance of biomedical content i n nursing s p e c i a l t y courses, i t seems evident that we need to prepare nurses with a broader base i n the s o c i a l s c i e n c e s to help them s u s t a i n t h e i r focus on the f a m i l y . The i n f l u e n c e of the c u l t u r a l background of the p a t i e n t and f a m i l y on nurses' experiences as r e p o r t e d in t h i s study i s a l s o r e l e v a n t f o r nur s i n g e d u c a t i o n . Nurses had d i f f i c u l t y understanding p a t i e n t s ' and fa m i l y members' decision-making or p r o v i d i n g support i n the context of d i f f e r e n t c u l t u r a l v a r i a b l e s . T h i s i n v e s t i g a t o r i s i n agreement with L e i n i n g e r ' s (1984) statement that the "nurse needs a s u b s t a n t i v e knowledge base of t r a n s c u l t u r a l n u r s i n g to ensure she co n t i n u e s to i n t e r a c t e f f e c t i v e l y and p r o f e s s i o n a l l y with a l l c l i e n t s " (p. 42). As educators, t h e r e f o r e , we need to ensure that b a s i c and p o s t - b a s i c l e v e l s of n u r s i n g education help nurses a c q u i r e a t r a n s c u l t u r a l knowledge base. Furthermore, we need to help nurses to implement the s k i l l s necessary f o r e f f e c t i v e t r a n s c u l t u r a l i n t e r a c t i o n . Anderson's (1987) Nurse-Patient N e g o t i a t i o n Model has been proposed as one means by which nurses could implement those s k i l l s . We need to f u r t h e r explore the use of models such as Anderson's to 226 help our f u t u r e p r a c t i t i o n e r s i n t e r a c t more e f f e c t i v e l y with t h e i r c l i e n t s from d i f f e r e n t c u l t u r e s . Nursing P r a c t i c e A major emphasis w i t h i n nurses' e t h i c a l p e r s p e c t i v e s on n u r s i n g dying p a t i e n t s i n a c r i t i c a l care s e t t i n g was t h e i r concern about a s e n s e l e s s decision-making process. T h i s emphasis p o i n t s out the need f o r a c a r e f u l l y planned approach to team decision-making i n the c l i n i c a l s e t t i n g v i s - a - v i s treatment abatement. Such decision-making must i n v o l v e the p a t i e n t ( i f p o s s i b l e ) as w e l l as the f a m i l y . Team decision-making needs to f o l l o w the process of r a t i o n a l , accountable thought c a l l e d f o r i n the l i t e r a t u r e . Mechanisms by which such decision-making can occur i n c l u d e e t h i c a l rounds and e t h i c s committees (Cohen, 1982; Davis, A., 1979; 1982; Fowler, 1986 a & b; L e s t z , 1977; Randal, 1983; Wlody & Smith, 1985). As we implement these k i d s of mechanisms, we need to ensure f u l l involvement of the p a t i e n t , f a m i l y , and s t a f f nurse. The i n f l u e n c e of nurses' p e r c e p t i o n s of support from others on t h e i r e t h i c a l p e r s p e c t i v e s c a l l s a t t e n t i o n to how we provide support f o r nurses w i t h i n the h i e r a r c h y of a h o s p i t a l s e t t i n g . Nurses' accounts emphasized t h e i r p e r c e p t i o n s of l a c k of support from 227 n u r s i n g a d m i n i s t r a t i o n ("no support from the upper echelons", "lone v o i c e i n the w i l d e r n e s s " ) . I t would seem that we need to study p e r c e p t i o n s of s t a f f nurses and nurse a d m i n i s t r a t o r s to understand how they can mutually support each other, and to develop mechanisms for t h i s to take p l a c e . Peer support a l s o appears to have been an important i m p l i c a t i o n of t h i s study. Some nurses i n d i c a t e d that peer support was "why I can work here", while o t h e r s i n d i c a t e d that "you j u s t don't t a l k about [nursing dying p a t i e n t s ] " . We need to f u r t h e r study and implement mechanisms by which s t a f f nurses can support each other i n t h e i r p r a c t i c e . The need to provide support to nurses may w e l l be of some urgency. Within t h i s study, some nurses experienced a l a c k of energy f o r s e l f that may have been r e l a t e d to a l a c k of support from o t h e r s . Expressions from nurses that they r e q u i r e d emotional d i s t a n c e and f e l t " c a l l o u s " may have i n v o l v e d a l e s s e n i n g of the q u a l i t y of p a t i e n t care they d e l i v e r e d ; a consequence that was evident i n R. Lamb's (1985) study. A study of the experiences of p a t i e n t s undergoing open heart surgery g i v e s r i s e to some concern about the q u a l i t y of c r i t i c a l care n u r s i n g p r a c t i c e at the bedside: 228 The 'busy-ness' and l a c k of concern on the part of nurses was c i t e d as a common b a r r i e r to e f f e c t i v e c a r e . Not o n l y d i d some c l i e n t s p e r c e i v e themselves to be misunderstood, but a l s o p o o r l y cared f o r . Contrary to p r o f e s s i o n a l b e l i e f s about p a t i e n t - c e n t e r e d care, i t i s evident that such care i s o n l y an i d e a l ; i t i s not always r e a l i z e d (Yamada, 1984, pp. 195-196). I t would appear that we need to provide nurses with support in t h e i r c l i n i c a l p r a c t i c e to help them f i n d new meanings that are more congruent with q u a l i t y p a t i e n t c a r e . Furthermore, we need to r e s p o n s i b l y address s i t u a t i o n a l c o n s t r a i n t s i n the workplace such as an e x c e s s i v e workload ('busy-ness') and i n t e r p r o f e s s i o n a l c o n f l i c t s to enable nurses to move c l o s e r to t h e i r p r o f e s s i o n a l i d e a l s . Recommendations f o r F u r t h e r Research Many of the i m p l i c a t i o n s o u t l i n e d i n the p r e v i o u s s e c t i o n of t h i s Chapter imply the need f o r f u r t h e r r e s e a r c h . However, at t h i s p o i n t the i n v e s t i g a t o r w i l l o u t l i n e some s p e c i f i c recommendations f o r f u t u r e r e s e a r c h that d i r e c t l y a r i s e from t h i s study. The r e s u l t s of t h i s study i l l u s t r a t e d nurses' e t h i c a l p e r s p e c t i v e s as e v o l v i n g over time and s u b j e c t to a v a r i e t y of i n f l u e n c e s . I t would seem b e n e f i c i a l 229 to f u r t h e r study nurses' e t h i c a l p e r s p e c t i v e s on nursing dying p a t i e n t s i n a c r i t i c a l care s e t t i n g at d i f f e r e n t p o i n t s i n t h e i r c a r e e r s ; p a r t i c u l a r l y at the commencement of t h e i r p r a c t i c e as c r i t i c a l care nurses, and at the p o i n t when they decide to leave c r i t i c a l c a r e . Research to f u r t h e r explore nurses' p e r c e p t i o n s of i n f l u e n c e s such as support from others and the c u l t u r a l background of the p a t i e n t and f a m i l y would enhance our understanding of the s i t u a t i o n a l context of nurses' e t h i c a l p e r s p e c t i v e s . Two major concepts that emerge from t h i s study i n c l u d e nurses' n o t i o n s of support and hope. Given that these concepts were fundamental to nurses' focus on support of the f a m i l y , i t would seem v a l u a b l e to f u r t h e r r e s e a r c h how these concepts are o p e r a t i o n a l i z e d in c l i n i c a l p r a c t i c e . Nurses' concerns about the s u f f e r i n g of p a t i e n t s and f a m i l y members e x p e r i e n c i n g p r o l o n g a t i o n of the process of dying a l s o p o i n t s out the need f o r r e s e a r c h to more f u l l y understand what p a t i e n t s ' and f a m i l y members' experiences are. In p a r t i c u l a r , there i s a need to explore the concerns of f a m i l y members and t h e i r p e r c e p t i o n s of support. Given the emphasis from nurses i n t h i s study on advocacy f o r f a m i l y members, we need to develop a b e t t e r understanding of what that 230 means from f a m i l y members' p e r s p e c t i v e s . Nurses i n t h i s study a l s o expressed concern about not knowing how f a m i l y members coped a f t e r the death of the p a t i e n t . To t h i s i n v e s t i g a t o r ' s knowledge, there has been no follow-up of f a m i l y members of p a t i e n t s who have experienced p r o l o n g a t i o n of the process of d y i n g . T h i s would appear to be an area u r g e n t l y i n need of n u r s i n g r e s e a r c h . Looking at the l i t e r a t u r e , i t would seem that we need to use c a u t i o n i n implementing theory from other d i s c i p l i n e s without p r i o r n u r s i n g r e s e a r c h . T h i s i s f a i r l y evident i n terms of t h e o r i e s of moral development. I t would a l s o appear that we need to use c a u t i o n i n our use of concepts such as s t r e s s , burnout and a t t r i t i o n . T h i s study i d e n t i f i e d t h a t energy f o r s e l f i n f l u e n c e d nurses' focus on t h e i r p e r s o n a l philosophy and sometimes meant that nurses needed to achieve emotional d i s t a n c e f o r themselves. T h i s need for emotional d i s t a n c e p a r a l l e l s d e s c r i p t i o n s of burnout in the l i t e r a t u r e (Maslach, 1982; Pines & Kanner, 1982). Burnout appears to have become recognized as a consequence of too much s t r e s s and too l i t t l e c oping; an end s t a t e . However, t h i s study emphasizes nurses' e t h i c a l p e r s p e c t i v e s as e v o l v i n g over time and s u b j e c t to a v a r i e t y of i n f l u e n c e s , 231 p a r t i c u l a r l y t h e i r p e r c e p t i o n s of support from o t h e r s . Notions of burnout that focus on the i n d i v i d u a l ' s s t a t i c a b i l i t i e s do not give us d i r e c t i o n to understand how i n d i v i d u a l s change over time i n d i f f e r e n t c o n t e x t s . In f a c t , i t i s becoming reco g n i z e d i n the l i t e r a t u r e that r e s e a r c h on burnout and a t t r i t i o n i s fragmentary and fraught with assumptions (Douglass & B e v i s , 1983; P r e s c o t t & Bowen, 1987). I t would appear that nurses' p e r c e p t i o n s of and responses to s t r e s s , burnout and a t t r i t i o n r e q u i r e f u r t h e r study. In c l o s i n g these recommendations f o r f u t u r e r e s e a r c h , the i n v e s t i g a t o r wishes to c a l l a t t e n t i o n to the need f o r r e s e a r c h on the e t h i c s of n u r s i n g p r a c t i c e in g e n e r a l . The Canadian Nurses' A s s o c i a t i o n (1985) reminds us of t h i s need i n r e l a t i o n to our dying p a t i e n t s by s t a t i n g that as "ways of d e a l i n g with death and the dying process change, n u r s i n g i s c h a l l e n g e d to f i n d new ways to preserve human va l u e s , autonomy and d i g n i t y " (p. 7). The c h a l l e n g e must begin with n u r s i n g r e s e a r c h . 232 REFERENCES Abrams, N. (1978). The r i g h t to death and the r i g h t to e u t h a n a s i a . In E. L. Bandman & B. Bandman (Eds.), B i o e t h i c s and human r i g h t s (pp. 139-140). Boston: L i t t l e , Brown & Co. A l l e n , M. A. (1974). E t h i c s of n u r s i n g p r a c t i c e . Canadian Nurse, 70(2), 22-23. A l l e n , M. 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Walters (Eds.), Contemporary i s s u e s i n b i o e t h i c s (2nd ed., pp. 333-337). C a l i f o r n i a : Wadsworth. (Reprinted from Minnesota Law Review, 1958, 43(1)). W i l l i a m s , P. (1978). Rights and the a l l e g e d r i g h t s of innocents to be k i l l e d . In E. L. Bandman & B. Bandman (Eds.), B i o e t h i c s and human r i g h t s (pp. 141-143). Boston: L i t t l e , Brown & Co. (Excerpted from Rights an a l l e g e d r i g h t s of innocents to be k i l l e d (1977), E t h i c s , 87, 383). Witte, K. L. (1984). V a r i a b l e s present i n p a t i e n t s who are e i t h e r r e s u s c i t a t e d or not r e s u s c i t a t e d i n a medical i n t e n s i v e care u n i t . Heart & Lung, 13(2), 159-163. Wlody, G. S., & Smith, S. (1985). A p r o p o s a l f o r h o s p i t a l e t h i c s a d v i s o r y committees. Focus on  C r i t i c a l Care, 1_2(5), 41-46. Woods, J . R. (1984). Death on a d a i l y b a s i s . Focus  on C r i t i c a l Care, _11_(3), 50-51. Wright, B. A., & Shontz, F. C. (1968). Process and tasks i n hoping. R e h a b i l i t a t i o n L i t e r a t u r e , 29(11), 322-331. Yamada, P. K. (1984). The i l l n e s s experience of  c l i e n t s undergoing s u r g i c a l i n t e r v e n t i o n f o r  coronary a r t e r y d i s e a s e : C l i e n t s ' p e r c e p t i o n s and  concerns"! Unpublished master's t h e s i s , U n i v e r s i t y of B r i t i s h Columbia, Vancouver. Y a r l i n g , R. R., & McElmurray, B. J . (1983). Rethinking the nurse's r o l e i n 'do not r e s u s c i t a t e * o r d e r s : A c l i n i c a l p o l i c y p r oposal i n n u r s i n g e t h i c s . Advances i n Nursing Science, 5(4), 1-12. Youngner, S. J . (1986). P a t i e n t autonomy, informed consent, and the r e a l i t y of c r i t i c a l c a r e . C r i t i c a l  Care C l i n i c s , 2(1), 41-51. Zaner, R. M. (1978). Eidos and s c i e n c e . In J . Bien (Ed.), Phenomenology and the s o c i a l s c i e n c e s : A  d i a l o g u e (pp. 1-19). The Hague: Martinus N i j h a f f . APPENDIX A ADVERTISEMENT APPENDIX B INFORMATION AND CONSENT 257 1. INFORMATION; RESEARCH STUDY: Nurses' E t h i c a l P e r s p e c t i v e s on Nursing Dying P a t i e n t s i n a C r i t i c a l Care S e t t i n g . I am a r e g i s t e r e d nurse working towards a master's degree at the U n i v e r s i t y of B r i t i s h Columbia. I am conducting a study to gain a b e t t e r understanding of what i t i s l i k e to nurse p a t i e n t s i n c r i t i c a l care when you b e l i e v e they w i l l l i k e l y d i e d e s p i t e the a p p l i c a t i o n of intense medical technology. T h i s l e t t e r i s to i n v i t e you to p a r t i c i p a t e i n my study i f you so wish. I hope that by g a i n i n g a b e t t e r understanding of t h i s s i t u a t i o n n u r s i n g w i l l be able to d e a l with i t more e f f e c t i v e l y . The procedure of the study w i l l i n v o l v e a s e r i e s of approximately t h r e e , one-hour i n t e r v i e w s scheduled at our mutual convenience. The i n t e r v i e w s w i l l take p l a c e at my home or yours a c c o r d i n g to your wish. I would p r e f e r not to i n t e r v i e w i n the h o s p i t a l s e t t i n g because I would p r e f e r not to be a f f i l i a t e d with any agency. During the i n t e r v i e w s you w i l l be f r e e to comment as you wish about how you f e e l about n u r s i n g 'dying' p a t i e n t s i n a c r i t i c a l care s e t t i n g . I w i l l tape the i n t e r v i e w s f o r convenience, but COMPLETE CONFIDENTIALITY WILL BE ENSURED THROUGHOUT THE STUDY by coding names. I w i l l t r a n s c r i b e the i n f o r m a t i o n I get from you and other nurses and w i l l look f o r common themes f r e q u e n t l y mentioned i n the i n t e r v i e w s . I hope to e v e n t u a l l y p u b l i s h my r e s u l t s . I f you choose to p a r t i c i p a t e i n my study I w i l l make sure you are informed of the r e s u l t s . YOUR IDENTITY WILL REMAIN CONFIDENTIAL IN ANY PUBLISHED OR UNPUBLISHED MATERIAL. YOU ARE UNDER NO OBLIGATION TO PARTICIPATE IN THIS STUDY, AND ARE FREE TO WITHDRAW AT ANY TIME. YOUR DECISION NOT TO PARTICIPATE WILL IN NO WAY AFFECT YOUR EMPLOYMENT OR MEMBERSHIP IN THE C.A.C.C.N. SHOULD YOU DECIDE TO PARTICIPATE, YOU ARE ALSO FREE TO REFUSE TO ANSWER ANY QUESTIONS. 258 I w i l l telephone you next week to see i f you are i n t e r e s t e d and to answer any q u e s t i o n s . I f you decide to p a r t i c i p a t e i n t h i s study I w i l l ask you to s i g n a form consenting to your p a r t i c i p a t i o n , and g i v i n g me permission to audiotape our i n t e r v i e w s . Thank you f o r your i n t e r e s t . Paddy Rodney, R.N., BSc.N. U.B.C. MSN student. 259 2. CONSENT FORM; RESEARCH STUDY: Nurses' E t h i c a l P e r s p e c t i v e s on Nursing Dying P a t i e n t s i n a C r i t i c a l Care S e t t i n g . I, , do agree to p a r t i c i p a t e i n i n t e r v i e w s f o r the purpose of t h i s r e s e a r c h study. I agree to these i n t e r v i e w s being audiotaped, and r e a l i z e that FULL CONFIDENTIALITY WILL BE MAINTAINED. I know that I am under NO OBLIGATION TO PARTICIPATE, and I AM FREE TO WITHDRAW FROM THE STUDY AT ANY TIME. I know that my DECISION TO PARTICIPATE WILL NOT AFFECT MY EMPLOYMENT OR MEMBERSHIP IN THE C.A.C.C.N. AND THAT IF I PARTICIPATE I AM FREE TO REFUSE TO ANSWER ANY QUESTIONS. T h i s r e s e a r c h study has been adequately e x p l a i n e d to me. SIGNED WITNESS DATE c.c. P a r t i c i p a n t Receipt of i n f o r m a t i o n acknowledged Receipt of consent acknowledged APPENDIX C AGENCY CONSENT FORM 261 AGENCY CONSENT FORM: RESEARCH STUDY; Nurses' E t h i c a l P e r s p e c t i v e s on Nursing Dying P a t i e n t s in a C r i t i c a l Care S e t t i n g The Executive of the B.C. Lower Mainland Chapter of the Canadian A s s o c i a t i o n of C r i t i c a l Care Nurses (C.A.C.C.N.) give t h e i r p ermission f o r the i n v e s t i g a t o r to a d v e r t i s e f o r p a r t i c i p a n t s f o r the r e s e a r c h study "Nurses' E t h i c a l P e r s p e c t i v e s on Nursing 'Dying' P a t i e n t s i n a C r i t i c a l Care S e t t i n g " through t h e i r a s s o c i a t i o n . Advertisement w i l l take p l a c e v e r b a l l y at a chapter meeting i n September 1986 and through a w r i t t e n advertisement i n the f a l l n e w s l e t t e r . The Executive have r e c e i v e d an e x p l a n a t i o n of the proposed study and understand t h a t : a) nurses w i l l be under NO OBLIGATION to p a r t i c i p a t e . b) p a r t i c i p a t i o n w i l l NOT EFFECT NURSES' EMPLOYMENT OR MEMBERSHIP IN THE C.A.C.C.N. c) nurses w i l l be FREE TO WITHDRAW FROM THE STUDY AT ANY TIME. d) nurses w i l l be FREE TO REFUSE TO ANSWER ANY QUESTIONS. e) FULL CONFIDENTIALITY WILL BE MAINTAINED THROUGHOUT THE STUDY. Signed: P r e s i d e n t P a s t - P r e s i d e n t T r e a s u r e r T r e a s u r e r - E l e c t Witness: Date: c c : C.A.C.C.N. Executive Receipt of i n f o r m a t i o n acknowledged Receipt of consent acknowledged APPENDIX D SAMPLE TRIGGER QUESTIONS 263 SAMPLE TRIGGER QUESTIONS: RESEARCH INTERVIEWS: Nurses' E t h i c a l P e r s p e c t i v e s on Nursing Dying P a t i e n t s i n a C r i t i c a l Care S e t t i n g The f o l l o w i n g are examples of areas that may be explored i n the i n t e r v i e w s . Phrasing and terminology of q u e s t i o n s w i l l vary as necessary d u r i n g the i n t e r v i e w s . 1. Can you t e l l me about some of the valu e s and b e l i e f s that are most important to you i n c a r i n g f o r dying p a t i e n t s i n c r i t i c a l care? 2. Are there c e r t a i n s i t u a t i o n s where your values or b e l i e f s are changed or challenged? 

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