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The experiences of intensive care unit nurses providing care to the brain dead patient Borozny, Margaret 1990

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THE EXPERIENCES OF INTENSIVE CARE UNIT NURSES PROVIDING CARE TO THE BRAIN DEAD PATIENT By MARGARET BOROZNY B.S.N., The U n i v e r s i t y of B r i t i s h Columbia, 1974 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING i n FACULTY OF GRADUATE STUDIES The S c h o o l of N u r s i n g We a c c e p t t h i s t h e s i s as conforming to the r e q u i r e d s t a n d a r d THE UNIVERSITY OF BRITISH COLUMBIA A p r i l 1990 @ Margaret Borozny, 1990 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. Department of Nursing  The University of British Columbia Vancouver, Canada Date April 19, 1990 DE-6 (2/88) ICU N u r s e s and the B r a i n Dead P a t i e n t i i A b s t r a c t THE EXPERIENCE OF INTENSIVE CARE UNIT NURSES PROVIDING CARE TO THE BRAIN DEAD PATIENT T h i s s t u d y d e s c r i b e s the meaning i n t e n s i v e c a r e u n i t n u r s e s a t t a c h t o t h e i r c a r e o f t h e b r a i n dead p a t i e n t . A p h e n o m e n o l o g i c a l m e t h o d o l o g y was used b e c a u s e o f i t s i n t e n t to u n d e r s t a n d e x p e r i e n c e as i t i s l i v e d . B e c a u s e t h e s e p a t i e n t s c o n s t i t u t e a u n i q u e c l a s s of dead p a t i e n t s w h i c h r e q u i r e i n t e n s i v e n u r s i n g c a r e and b e c a u s e o f t h e s c a r c i t y o f i n f o r m a t i o n a v a i l a b l e on t h e s u b j e c t i v e e x p e r i e n c e o f n u r s e s who p r o v i d e t h i s c a r e , t h e s t u d y was c o n s i d e r e d to be e s s e n t i a l t o f i l l f u l a gap i n our k n o w l e dge. D a t a were c o l l e c t e d t h r o u g h 28 i n t e r v i e w s w i t h 11 C a u c a s i a n f e m a l e p a r t i c i p a n t s who work i n the i n t e n s i v e c a r e u n i t s o f a t e r t i a r y and a q u a t e r n a r y c a r e h o s p i t a l w i t h i n t h e g r e a t e r V a n c o u v e r a r e a . T h e i r ages r a n g e d from t h e i r e a r l y t w e n t i e s to o v e r f o r t y y e a r s o f age. They r e p r e s e n t e d f i v e r e l i g i o u s d e m o n i n a t i o n s w i t h one p a r t i c i p a n t h a v i n g no r e l i g i o u s a f f i l i a t i o n s . One n u r s e had c a r e d f o r between two and f i v e b r a i n dead p a t i e n t s , f o u r had p r o v i d e d c a r e f o r s i x to t e n b r a i n dead p a t i e n t s , and s i x had c a r e d f o r more t h a n t e n b r a i n dead p a t i e n t s . T h r o u g h o u t the p a r t i c i p a n t s ' a c c o u n t s d i s s o n a n c e was t h e p e r v a s i v e and u n i f y i n g theme. The d i s s o n a n c e was s e e n i n the f o r m o f e i t h e r p e r s o n a l or i n t e r p e r s o n a l d i s c o r d . The f o r m e r was s e e n i n r e l a t i o n t o f i v e a r e a s : th e ICU N u r s e s and t h e B r a i n Dead P a t i e n t i i i p a r t i c i p a n t ' s p h i l o s o p h y a b o u t n u r s i n g , t r a d i t i o n a l n u r s i n g c a r e a c t i v i t i e s , t h e c o n c e p t o f b r a i n d e a t h , o r g a n r e t r i e v a l and t r a n s p l a n t a t i o n , and p r o f e s s i o n a l r e s p o n s i b i l i t i e s i n r e l a t i o n to m e e t i n g the n u r s e ' s own e m o t i o n a l n e e d s . In c o n t r a s t , t h e l a t t e r o c c u r r e d between the n u r s e and f a m i l i e s , p h y s i c i a n s , the P a c i f i c Organ R e t r i e v a l f o r T r a n s p l a n t a t i o n Team and n u r s i n g c o l l e a g u e s . E i t h e r f o r m o f d i s s o n a n c e r e s u l t s i n p e r s o n a l d i s t r e s s and s u b s e q u e n t a t t e m p t s to r e d u c e the d i s s o n a n c e by d i s t a n c i n g a n d / o r d e s i g n a t i n g a n o t h e r as the t a r g e t o f n u r s i n g c a r e . ICU N u r s e s and t h e B r a i n Dead P a t i e n t i v T a b l e o f C o n t e n t s A b s t r a c t i i T a b l e o f C o n t e n t s i v L i s t o f F i g u r e s i x Acknowledgements x D e b b i e x i CHAPTER 1: INTRODUCTION 1 B a c k g r o u n d t o the P r o b l e m 1 The D e f i n i t i o n o f Dea t h 2 B r a i n D e a t h and Organ T r a n s p l a n t a t i o n 3 B r a i n D e a t h and C l i n i c a l P r a c t i c e 4 P r o b l e m S t a t e m e n t 7 P u r p o s e o f t h e St u d y .8 C o n c e p t u a l Framework 8 R e s e a r c h Q u e s t i o n 10 T h e o r e t i c a l and M e t h o d o l o g i c a l P e r s p e c t i v e s 10 I n t r o d u c t i o n o f the M e t h o d o l o g y 10 D e f i n i t i o n o f Terms 12 A s s u m p t i o n 13 L i m i t a t i o n s 13 Summary i 14 CHAPTER 2: REVIEW OF SELECTED LITERATURE 16 C r i t e r i a f o r D e t e r m i n a t i o n o f B r a i n D e a t h 16 ICU Nurses and the B r a i n Dead P a t i e n t The Conceptual D i s a r r a y Regarding B r a i n Death by Health Care P r o f e s s i o n a l s 21 The Nurse and the Dying P a t i e n t i n an I n t e n s i v e Care S e t t i n g 23 The Nurse and the B r a i n Dead P a t i e n t 26 Summary 31 CHAPTER 3: METHODOLOGY 33 S e l e c t i o n of P a r t i c i p a n t s 33 C r i t e r i a f o r S e l e c t i o n 34 Subject S e l e c t i o n Procedure 36 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 38 E t h i c s and Human Rights 39 Data C o l l e c t i o n 40 Procedure f o r Data C o l l e c t i o n 40 Data A n a l y s i s 42 Summary 43 CHAPTER 4: THE PARTICIPANTS' ACCOUNTS 45 I n t r o d u c t i o n 45 Dissonance as the E s s e n t i a l S t r u c t u r e of P r o v i d i n g Care to the B r a i n Dead P a t i e n t 45 C o n c e p t u a l i z a t i o n of Dissonance 45 V a l i d a t i o n of the Concept of Dissonance 48 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 50 Personal Dissonance 51 ICU N u r s e s and t h e B r a i n Dead P a t i e n t v i P h i l o s o p h y o f n u r s i n g 51 T r a d i t i o n a l n u r s i n g c a r e a c t i v i t i e s 55 C o n c e p t o f b r a i n d e a t h 62 Organ r e t r i e v a l and t r a n s p l a n t a t i o n .71 P r o f e s s i o n a l r e s p o n s i b i l i t y and p e r s o n a l needs 79 I n t e r p e r s o n a l D i s s o n a n c e 81 The n u r s e and t h e f a m i l y 82 The n u r s e and t h e p h y s i c i a n 86 The n u r s e and t h e PORT Team 96 The n u r s e and h e r n u r s i n g c o l l e a g u e s 100 P e r s o n a l D i s t r e s s 103 D i s t a n c i n g 104 R a t i o n a l e f o r d i s t a n c i n g 105 How p a r t i c i p a n t s d e s c r i b e t h e p r o c e s s o f d i s t a n c i n g 106 When d i s t a n c i n g o c c u r s I l l D e s i g n a t i n g A n o t h e r as the T a r g e t o f N u r s i n g o f N u r s i n g C a r e 112 F a m i l y 112 T r a n s p l a n t r e c i p i e n t 117 Nurse 119 Summary 120 CHAPTER 5: DISCUSSION OF FINDINGS 122 P e r s o n a l D i s s o n a n c e . . .vi" 122 ICU Nurses and the B r a i n Dead P a t i e n t v i i I n t e r p e r s o n a l Dissonance 132 D i s t a n c i n g 140 Ra t i o n a l e f o r D i s t a n c i n g 141 Detachment 143 D e p e r s o n a l i z a t i o n 147 Desi g n a t i n g Another as the Target of Nursing Care...150 The Family as the R e c i p i e n t of Nursing Care....152 The T r a n s p l a n t R e c i p i e n t as the Target of Nursing Care 153 Nursing the Nurse 154 Summary 155 CHPATER 6: SUMMARY, CONCLUSIONS, AND IMPLICATIONS FOR NURSING 158 Summary of the Study 158 Conclusions ...161 I m p l i c a t i o n s f o r Nursing 162 I m p l i c a t i o n s f o r Nursing P r a c t i c e 162 I m p l i c a t i o n s f o r Nursing Education 166 I m p l i c a t i o n s f o r Nursing Research 168 Summary 169 REFERENCES 171 APPENDICES 186 Appendix A C e r t i f i c a t e of Approval f o r the Study....187 ICU N u r s e s and t h e B r a i n Dead P a t i e n t v i i i A p p e n d i x B L e t t e r o f I n f o r m a t i o n 189 A p p e n d i x C Addendum t o L e t t e r o f I n f o r m a t i o n 192 A p p e n d i x D C o n s e n t Form 194 A p p e n d i x E T r i g g e r Q u e s t i o n s 197 A p p e n d i x F S o c i o d e m o g r a p h i c D a t a 199 ICU N u r s e s and t h e B r a i n Dead P a t i e n t i x L i s t of F i g u r e s F i g u r e 1. The e x p e r i e n c e o f p r o v i d i n g c a r e t o the b r a i n dead p a t i e n t i s one o f d i s s o n a n c e 49 ICU N u r s e s and t h e B r a i n Dead P a t i e n t x Acknowledgements I am i n d e b t e d t o the e l e v e n i n t e n s i v e c a r e u n i t n u r s e s who s h a r e d t h e i r e x p e r i e n c e s w h i c h p r o v i d e d me w i t h t h e m a t e r i a l f o r t h i s t h e s i s and a l s o w i t h a deep a p p r e c i a t i o n o f t h e i r work. T h e i r i n t e r e s t , e n t h u s i a s m and d e d i c a t i o n was o v e r w h e l m i n g . I n a d d i t i o n , I g r a t e f u l l y a c k n o w l e d g e t h e c o n t i n u e d s u p p o r t and encouragement o f f a m i l y , f r i e n d s and c o l l e a g u e s . To F e l i x , my f r i e n d and mentor, I owe a s p e c i a l d e b t o f g r a t i t u d e f o r h i s u n e n d i n g f a i t h , u n d e r s t a n d i n g and e n c o u r a g e m e n t . F i n a l l y , a n o t e o f a p p r e c i a t i o n t o my t h e s i s c o m mittee f o r t h e i r a s s i s t a n c e w i t h t h i s s t u d y . ICU Nurses and the Brain Dead Patient xi Debbie What were you doing...out so late...and all alone? Were you drinking?...Were you on drugs? Did you even know what happened?... It is now four days since you came to our unit...head injury, unconscious, lifeless. Tonight I am your nurse...You are so young, your body so lovely, so healthy... your head so bruised. You shouldn't be here, Debbie, lying so still...so broken...You're only 19... I am so afraid...of the responsibility... of being your nurse...and of being touched by the fragile thread that is your hold on life. Can you hear me? I talk and even sing to you, in the dark as I move around . . . checking . . . charting . . . caring... Can you feel me touch you?...with my hands...with my heart... Did you see your mother?...hear her cry...Her face paled, knees buckled when she saw you. And your brother, too young to bear such grief, circled her waist with his arm and held her up. Watching and sensing anguish, I felt my heart in my mouth...saw one of my own daughters... lying . . . like you...myself in your mother's place...and I was terrified. You died soon after...I knew you would...and I felt helplessbitter . . . and then so very hopeless . . . Did it matter...what I did? that I was there?... that I cared... At home I cried...laid awake, alone at night, and wondered at the pain I felt. I thought about quitting... never going back...to face again the sorrow of such suffering. Sometimes it hurts so much to care...to reach out...I never really knew in the beginning, how much it would take to be a nurse. Margaret Fenton, Winnipeg Manitoba [as cited in Benner, P. and Wrubel, J . , (1989), pp. 376 -377] ICU Nurses and the Brain Dead Patient 1 CHAPTER 1: INTRODUCTION Background to the Problem Advances in medicine and technology have created a new class of dead patients - the brain dead. They are cared for by nurses who were once solely concerned with the administration of care to the living and the dying. These nurses work in intensive care units where 95% of the brain death diagnoses are made (Bart, Macon, & Humphries, 1979). The care provided includes highly technical"assessment and maintenance of hemodynamic and metabolic functions and also basic nursing care measures such as hygiene, turning, suctioning, bowel and bladder care, and the support of significant others. To the casual observer, there is little to differentiate this care from that provided to the living. Little is known about the experience of nurses who provide this care.. Therefore, the focus of this study will be to understand, from the perspective of the nurse, the experience of providing care to the brain dead patient. To understand the origins of the concept of brain death, it is necessary to review how death has been defined. In addition, the rationale for nursing's involvement with patients beyond their point of death can be appreciated by reviewing the relationship that exists between brain death and organ transplantation. Finally, a look at brain death in clinical practice can provide some insights into the significance of brain death for nurses. ICU Nurses and the Brain Dead Patient 2 The Definition of Death The earliest clinical sign utilized for determining death was the absence of respirations (Walker, 1979). However, following Harvey's seventeenth century discovery of the circulation of the blood and Laennec's development of the stethoscope in 1819 (Lyons & Pet-rucelli, 1987), emphasis shifted to auscultation of the heart and the absence of a heart beat became an infallible sign of death (Alexander, 1980; Presidents Commission for the Study of Ethical Problems in Medicine and Behavioral Research, 1981; Selby, 1985; Walker, 1979). Physicians and the public were confident that death could be pronounced with certainty based on cessation of respiratory and cardiac activity. However, at the beginning of the twentieth century, the ability to artificially maintain respirations, independent of brain function, became a reality (Cushing, 1902). Over the ensuing years, advancements were seen in cardiopulmonary resuscitation, ventilators and cardiac drugs. These resuscitative techniques, which were developed to provide life support for individuals in comatose states, also permitted a growing number of patients with dead brains to exist for indefinite periods of time with beating hearts and artificially maintained respirations (Walker, 1979). This clinically induced state resulted in many bioethical questions centering on the determination of the point at which death could and should be declared. Nevertheless, ICU Nurses and the Brain Dead Patient 3 over the years there has been "the gradual acceptance of the proposition that the death of the brain is a necessary and sufficient condition for the death of the individual" (Lamb, 1985, p. 5). Brain Death and Organ Transplantation A technological advance in medicine which had an impact on the intensive care unit nurse and the brain dead patient was the progress made in organ transplantation. Following the first cadaver kidney transplant in 1958 (West, Kelley, Campbell, Burns-Morrison & Zimmerman, 1986), it was recognized that viable organs would have to be recovered in order for transplantation to succeed (Couch, Curran, Hyg & Moore, 1964). The result was that a medical demand for brain dead patients was created "so that life might be declared extinct at a time when healthy organs were being irrigated adequately" (Walker, 1979, p. 168). Not only are the brain dead recognized as an excellent source of organs but they also remain the only source of hearts, lungs, and livers and the primary source of kidneys (Youngner, Landefeld, Coulton, Juknialis & Leary, 1989). A review of transplantation statistics reflects the medical demand for brain dead patients and the resulting requirement for nurses to provide donor care. For instance, in Canada during 1987, there were 2912 transplants with solid organ transplants comprising 1056 of the total (Sullivan, 1988). Within the same time period, in British Columbia 135 ICU Nurses and the Brain Dead Patient 4 cadaveric transplants were done, which was an increase from the 95 cadaveric transplants of 1986 and the 34 total transplants performed in 1985 (Pacific Organ Retrieval for Transplantation, 1986; 1987). In 1989 British Columbia's transplantation program moved into the arena of heart, heart - lung, and liver transplantation. These increasing figures underlie the fact that transplantation has become the acceptable method of treatment for organ failure. Nonetheless, to save these failing organ systems in a dead patient, nurses are required to provide not only basic nursing care but also aggressive measures. The Canadian Nurses Association's (1988, p.14) and subsequently the Registered Nurses Association of British Columbia (1988, p. 27), in their statements on the role of nurses in organ and tissue donation, retrieval and transplantation recognize that "nurses play a key role in identifying potential donors and in caring for donors, recipients, and their families. The nursing role involves: assessment, support, counselling, teaching, coordination, referral, health maintenance, supervision, monitoring, and advocacy." Brain Death and Clinical Practice Though the case reported by Cushing (1902) involved maintenance of vital functions for only twenty-three hours, there are now a number of reports of prolonged somatic survival following brain death (Fabro, 1982; Klein, 1982; Parisi, Kim, Collins, & Hilfinger, 1982). In one instance, ICU Nurses and the Brain Dead Patient 5 a twenty-three year old male was subjected to mechanical ventilation and hyperalimentation and had pneumonia, sepsis, urinary-tract infection, cardiac arrhythmias, gastrointestinal-tract bleeding, and disseminated intravascular coagulation successfully treated for 112 days after being pronounced brain dead, as "the family refused to accept the patient's demise because of his age and because of strong religious beliefs" (Klein, 1982, p. 13.62). Though this case appears to be extreme, the author is aware of a similar situation where a young male who met the criteria for brain death was pronounced dead three times on four consecutive days as his family could not accept his death. Full support of somatic functioning was maintained during this period. When ventilatory support was finally withdrawn, the staff was accused by the patient's wife of killing him. Physician reluctance to terminate care of the brain dead, when such an action is opposed by the family, is documented in a survey of American and Canadian neurologists and neurosurgeons (Black & Zervas, 1984). Forty-seven percent of the respondents indicated they would continue ventilatory support, another 29% would declare death but continue with ventilation and only 6% would actually cease support of vital functions. A questionnaire on brain death, which was distributed in 1986 to 126 intensive care unit nurses, who were working ICU Nurses and the Brain Dead Patient 6 at the Vancouver General Hospital or the British Columbia's Children's Hospital, indicated 95% of the 76 respondents had provided care to a brain dead patient (Borozny, 1988). Of the respondents 93% felt that the existence of a person ends when brain functioning ceases and 95% stated brain death alone is a sufficient criterion for withdrawal of life support systems. However, an opposing view was stated by one nurse: "Although a person's brain is dead it's impossible to believe (for me) that this person no longer exists at all" (Borozny, 1988, p. 39). In another case known to the author, a nurse refused to discontinue mechanical ventilation of a patient who was pronounced brain dead as she felt such action would then cause his death. The reaction of this nurse may be related to either an inability to accept a definition of death based on the irreversible loss of brain function ora confusion about the meaning and implication of brain death. The latter has been documented in the literature (Youngner et al., 1989) and will be discussed in detail in Chapter Two. Though brain death has been the subject of much attention with regards to the medical criteria and the associated legal, moral, and religious issues, relatively little has been published about the experience of individuals involved with the brain dead. There are a few articles indicating that the public does not think of death in terms of cessation of brain function (Arnold, Zimmerman, ICU Nurses and the Brain Dead Patient 7 & Martin, 1968; Kaufman & Lynn, 1986). There are also reports about the families of brain dead patients and their feelings regarding organ donation (Bartucci, 1987; Bartucci & Seller, 1986; Butcher, 1979; Christopherson & Lunde, 1971; Gideon & Taylor, 1981; Morton & Leonard, 1979). In addition, nursing responsibilities ranging from basic and intensive nursing care to identification of potential donors have been outlined (Brent, 1983; Canadian Nurses Association, 1988; Daly, 1982; Davies & Lemkie, 1987; Registered Nurses Association of British Columbia, 1988; Youngner, et al., 1985; Walker, 1985). However, the literature on the reactions of nurses is limited, largely anecdotal and concerned mainly with the provision of care to the small subpopulation of brain dead patients who become organ donors.1 Problem Statement Medical and technological advances have made it possible to maintain an artificial life independent of brain function. The refusal of some families to accept the reality of brain death, the resulting hesitancy to pronounce death and the medical demand for viable organs for transplantation have resulted in prolonged and aggressive medical and nursing management of patients who by contemporary criteria are dead. However, there has been 1. Only ten percent or less of the total number of brain dead patients become organ donors (West, 1986; Youngner et al. , 1985). ICU Nurses and the Brain Dead Patient 8 very little research regarding the consequences for nurses of providing care which is traditionally associated with living patients to the brain dead. Therefore, the problem is to determine from the perspective of the nurse the meaning attached to caring for. the brain dead patient. Purpose The purpose of the study is to describe the experience of intensive care unit nurses who provide care to the brain dead patient. Conceptual Framework When nursing behaviors traditionally associated with living patients are also applied to the dead then an incongruency exists between the nurse's actions and her knowledge regarding death and her previous experiences with death. A theoretical perspective which this researcher used as a starting point to help explain how nurses respond to this discordant reality is cognitive dissonance theory developed by Festinger (1957; 1959). Within Festinger's theory is the belief that the individual strives for consistency or consonance within himself - between his cognitions and his behaviours. These cognitions are "any knowledge, opinion, or belief about the environment, about oneself, or about one's behavior" (Festinger, 1957, p. 3). When any two of these cognitive elements (ie. knowledge and behaviour) are in a relationship ICU.Nurses and the Brain Dead Patient 9 where the obverse of one element would follow from the other, then cognitive dissonance exists (Festinger, 1957; 1959). For instance, in the provision of care to the brain dead, there is an inconsistency between the nurse's knowledge about life and death and her behaviour towards the patient who has complete loss of brain function. Festinger (1957) describes four situations which may lead to dissonance. Any one or all of these may cause dissonance for nurses when caring for the brain dead: (1) logical inconsistency (ie. treating the dead as if they were alive), (2) culture mores (ie. what is acceptable treatment of the dead), (3) one cognition being included in a more encompassing cognition (ie. I am a nurse and nurses care for the well, the sick, and the dying), and (4) past experience (ie. once a patient dies treatment ceases). The presence of the dissonance results in psychological discomfort and subsequent pressures to reduce or eliminate the dissonance (Festinger, 1957). "The strength of the pressures to reduce the dissonance is a function of the magnitude of the dissonance" (Festinger, 1957, p. 18). According to Festinger (1957) the physical, social or psychological reality which impinges on a person will determine the value of the cognitions and consequently the magnitude of the dissonance. This dissonance may be reduced by changes in behaviour, by changes of cognition, by ICU Nurses and the Brain Dead Patient 10 exposure to new information and by the lowering in importance of the whole matter (Festinger, 1957). Intensive care unit nurses caring for the brain dead patient may experience many conflicts among their knowledge, beliefs, opinions and actions. For example, dissonance may arise when the nurse is expected to accept brain death as being synonymous with the death of a human being. This is illustrated by the nurse who refused to turn off the ventilator and by another nurse who stated "I don't believe nursing care is to be neglected when [the] patient is brain dead - comfort measures, turns, .suctioning etc. - continue UNTIL [the] PATIENT [is] PRONOUNCED DEAD" (Borozny, 1988, p. 40). It is felt that Festinger's Cognitive Dissonance Theory is relevant to this study. Consequently, it will provide the conceptual framework for the study. Research Question This study will seek an answer to the following question: 1. What meaning do intensive care nurses attach to their caring for the adult brain dead patient? Theoretical and Methodological Perspective Introduction of the Methodology Because qualitative methods focus on identifying, documenting and knowing the phenomena from the informant's perspective and quantitative research is oriented towards determining cause and effect (Field & Morse, 1985; Leininger, 1985), the former is the methodology of choice ICU Nurses and the Brain Dead Patient 11 for this study. Therefore, the research process will involve subjective description by the participants and inductive reasoning by the researcher as opposed to the "deductive reasoning, objectivity, quasi-experiments, statistical techniques, and control" (Munhall & Oiler, 1986, p. 3) which characterize the quantitative approach to research. In the realm of qualitative research there exist a number of "descriptive analytical investigations of the world of human experience" (Field & Morse, 1985). One approach, phenomenology, has as its goal the accurate description and understanding of experience as it is lived (Anderson, 1989; Knaack, 1984; Lynch-Sauer, 1985; Oiler, 1982; Oiler, 1986; Omery, 1983). This requires understanding of "both the cognitive subjective perspective of the person who has the experience and the effect that perspective has on the lived experience or behaviour of the individual" (Omery, 1983). Therefore, phenomenological methodology is considered appropriate to answer this study's question which seeks to describe the experience of nurses caring for the brain dead patient. A fundamental feature of phenomenology is bracketing which involves the researcher explicitly stating and setting aside any preconceived notions, expectations or assumptions about the phenomena (Field & Morse, 1985; Knaack, 1984; Oiler, 1982; Oiler, 1986; Omery, 1983). This is necessary ICU Nurses and the Brain Dead Patient 12 in order to truly approach the phenomena wide-eyed and "to understand human experience from the individual's perspective" (Knaack, 1984). A premise of qualitative research is that "people have cognitions that help them to make sense of their world, and the researcher needs to discover and understand these cognitive world views and lifeways of humans" (Leininger, 1985, p. 6). When these cognitions are discordant then Festinger's theory of cognitive dissonance can assist the researcher in understanding the experience of the participants. Therefore cognitive dissonance theory as a conceptual framework is compatible with phenomenological methodology. Definition of Terms The following terms are defined to explain their use in the study: Brain Death - is the irreversible cessation of brain function as defined by profound coma, apnea, and the absence of brain stem reflexes when potentially reversible conditions have been excluded and an etiology capable of causing brain death has been established (Canadian Congress of Neurological Sciences, 1986; Health Services Directorate, 1986). Care - "those assistive, supportive, or facilitative acts toward or for another individual" (Leininger, 1984, p. ICU Nurses and the Brain Dead Patient 13 4), which are normally associated with attempts to improve a human condition. Dissonance - the clashing of coexisting beliefs, perceptions, values, opinions, knowledge and actions within one's self (personal dissonance) or between one's self and another (interpersonal dissonance). Experience - the totality of feelings, beliefs, cognitions, and actions which describe how a nurse reacts to and copes with the act of providing care to a brain dead patient. Intensive Care Unit (ICU) Nurse - a registered nurse who utilizes high technology and assessment and management skills to sustain life in acutely i l l patients in an intensive care environment of a tertiary or quaternary care hospital. Meaning - the significance the nurse assigns to her feelings, beliefs, cognitions, and actions when providing care to a brain dead patient. Assumption One assumption is pertinent to this investigation. It is assumed that the provision of care to a brain dead patient has meaning for the intensive care unit nurse such that she would be receptive to sharing her experience. Limitations In this study the participants were drawn from two hospitals - one a tertiary care hospital and the other a ICU Nurses and the Brain Dead Patient 14 quaternary care hospital. Both hospitals are located within a large metropolitan area of one western province and have the highest incidence of brain dead donors for the province. The sample therefore consists of ICU nurses who probably have greater experience with brain dead patients and who possibly might have a different perspective on brain death due to their active involvement in organ retrieval, than nurses would working in a community hospital. In addition, patients younger than sixteen usually are not admitted to these hospitals, therefore, the meaning the study's participants attach to caring for the brain dead patient may not represent the experience of pediatric ICU nurses. These factors pose limitations to the generalization of the study's findings. Summary This chapter has defined the problem, the purpose of the study and the research question. The conceptual framework guiding the study was identified. In addition, the methodology, which will be explained in more detail in Chapter Three, was introduced. Studying the experience of intensive care unit nurses who provide care for the brain dead patient is of importance to nursing because not only are a large percentage of ICU nurses caring for the brain dead but the nursing measures employed are those traditionally associated with life and its maintenance. Further, the increasing medical demand for ICU Nurses and the Brain Dead Patient 15 cadaver organ donors, the refusal of some families to accept brain death and the resulting hesitancy to pronounce death have a direct impact on the intensive care unit nurse. The following chapter will examine the literature on the criteria of brain death, the conceptualization of brain death by health care professionals, the nurse and the brain dead patient and the nurse and the dying patient in an intensive care setting. ICU Nurses and the Brain Dead Patient 16 CHAPTER 2: REVIEW OF SELECTED LITERATURE This review of the literature pertinent to the conceptualization of the problem statement will begin with an examination of the criteria of brain death and a brief review of its conceptual disarray among health care professionals. Anecdotal reports and studies on the experiences of nurses caring for the brain dead patient will also be included. However, because very little published information was found on the latter, literature relevant to the more global nursing experience of caring for the dying patient in an intensive care unit will be examined. How ICU nurses view dying may have an impact on the meaning they attach to the care of the brain dead patient. Criteria for Determination of Brain Death The ability to artificially sustain vital functions independent of brain function coupled with the growing need for viable organs for transplantation created a major bioethical dilemma. Two concerns were central to this situation. First, there was the possibility of inadvertently maintaining vital functions in a corpse. Second, there was the "danger that vital organs could be taken from the unconscious, but still 'living' patient" (Law Reform Commission of Canada, 1979, p.6). The medical community, cognizant of the fact that the traditional criteria for determining death (absence of cardiac and respiratory functions) were obsolete, undertook steps to ICU Nurses and the Brain Dead Patient 17 establish the diagnosis of death based on the concept of irreversible loss of brain function. The Ad Hoc Committee of the Harvard Medical School (1968), whose purpose was to "define irreversible coma as a new criterion for death" (p.85) outlined the following clinical signs as indicative of a permanently nonfunctioning brain. In the absence of hypothermia and central nervous system depression the patient would demonstrate: (a) unreceptivity and unresponsitivity; (b) apnea; (c) absence of all brain stem reflexes (corneal, gag, oculocephalic, oculovestibular and pupillary light) and as a rule absence of spinal cord reflexes; and (d) an isoelectric electroencephalogram (EEG) which was considered to be only of confirmatory value and not a requirement for establishing the diagnosis. All of the above had to be repeated and confirmed at least 24 hours before death was declared. During the same year the Canadian Medical Association (1968) issued a statement on death. Three key points were made: 1. The determination of death is the legal responsibility of the physician and should remain so. In situations involving transplantation, two or more physicians who are in no way concerned with the transplantation should make the decision. 2. Death is defined in terms of cerebral function. ICU Nurses and the Brain Dead Patient 18 3. The criteria formulated by the Ad Hoc Committee of the Harvard Medical School are suggested aids to be used in determining death. The Conference of Medical Royal Colleges and Faculties of the United Kingdom (1976a, 1976b) have also endorsed brain death as the criterion for withdrawal of medical treatment. However, they differ from the Ad Hoc Committee in three respects. First, the diagnosis of a disorder which can lead to brain death has to be fully established before discontinuing treatment. Second, though the pupillary reaction has to be absent, the pupils do not have to be dilated. This statement has subsequently been supported by others (Pallis, 1982; Plum & Posner, 1980). Third, there must be repetition of the tests but the time interval will depend on the primary clinical condition and the course of the disease, therefore it will be a matter for medical judgment. The Canadian Congress of Neurological Sciences (1986) has prepared guidelines for the diagnosis of brain death which have been endorsed by the Canadian Neurological Society, the Canadian Neurosurgical Society, the Canadian Association for Child Neurology, the Canadian Society of Clinical Neurophysiologists and the Canadian Medical Association (Health Services Directorate, 1986). These guidelines emphasize: ICU Nurses and the Brain Dead Patient 19 1. The etiology of brain death must be established and reversible conditions, such as hypothermia, drug intoxication, treatable metabolic disorders, shock, and nerve or muscle dysfunction due to disease or drugs, must be excluded. 2. Deep coma and unresponsiveness must exist. However, spinal reflexes may persist (Ivan, 1973; Ropper, 1984). 3. Brain stem reflexes must be absent and pupils must be midsized or larger. 4. In the presence of adequate pC02 levels (40 +_ 5 mmHg) and passive oxygenation, apnea must exist when the patient is disconnected from the ventilator for 10 minutes. 5. Reassessment is essential, however, the interval may range from 2 hours to 24 hours depending on the etiology. The determination of brain death is a clinical diagnosis (Ad Hoc Committee, 1968; Canadian Congress of Neurological Sciences, 1986; Conference of Medical Royal Colleges and Faculties in the United Kingdom, 1976a, 1976b; Health Services Directorate, 1986). Nonetheless, special tests, such as electroencephalography or cerebral angiography may be used to support the clinical diagnosis (Canadian Congress of Neurological Sciences, 1986). In addition to the efforts of the medical profession, the Law Reform Commission of Canada, in 1976, began an extensive research project on the protection of human life. After receiving input from private citizens, the Canadian ICU Nurses and the Brain Dead Patient 20 Nurses Association, federal and provincial medical associations, the Canadian Bar Association and religious groups, the Law Reform Commission (1981) recommended the following amendment to the Interpretation Act: For all purposes within the jurisdiction of the Parliament of Canada, (1) a person is dead when an irreversible cessation of all that person's brain functions has occurred. (2) the irreversible cessation of brain functions can be determined by the prolonged absence of spontaneous circulatory and respiratory functions. (3) when the determination of the prolonged absence of spontaneous circulatory and respiratory functions is made impossible by the means of support, the irreversible cessation of brain functions can be determined by any means recognized by the ordinary standards of current medical practice, (p. 25) To date the recommendations of the Commission are not part of Canadian Legislation. As health care is a matter of provincial concern, each province, independent of the federal government, has the option to incorporate or ignore the proposals of the Law Commission. Since 1975, Manitoba has remained the only province with a statutory definition of death (Health Services Directorate 1986; Law Reform Commission, 1979). This definition is based on the irreversible cessation of all brain functions. ICU Nurses and the Brain Dead Patient 21 The Conceptual Disarray Regarding Brain Death by Health Care Professionals Despite an apparent acceptance of irreversible cessation of brain function as being the criterion for determining death, a recent exploratory-descriptive study of health care professionals by Younger et al. (1989) indicates a lack of conceptual clarity regarding brain death. This study sought to determine the participants' knowledge about brain death and "underlying concepts of death - in other words, which specific qualities of brain function are considered to be so essential or fundamental that their absence is equated with the death of a patient" (Youngner et al. , 1989, p.2206). A nonprobability sample consisting of 115 physicians and 80 nurses (20 medical ICU nurses, 20 surgical ICU nurses and 40 operating room nurses) who were likely to be involved in the care of brain dead patients, their families and or the organ retrieval process were interviewed. Knowledge regarding brain death was assessed by a multiple choice factual question and two case scenarios. The question asked was "What brain functions must be lost for a patient to be declared brain dead?" (Youngner et al. , 1989, p.2206). For the case studies, respondents were asked • whether patient A who had irreversible loss of all brain function and patient B who had irreversible loss of all cortical brain function (ie. vegetative state) were legally ICU Nurses and the Brain Dead Patient 22 dead. Of the 80 nurses only 48 (60%) correctly answered the factual question, 50 (62.5%) correctly identified patient A as legally dead, and 61 (76.25%) correctly identified patient B as riot being legally dead. The respondents' personal concepts of death were elicited by asking "Leaving aside legalities, in your personal opinion, is this patient [A and B] dead?" (Youngner et al., 1989, p.2207). When the participants indicated patient A or patient B was, in their personal opinion dead, they were then asked "What makes this patient dead" (Youngner et al. , 1989, p.2207). If the participants indicated they did not consider patient A or patient B dead they were asked "What functions would have to be lost for you to consider this patient dead?" (Youngner et al. , 1989, p.2207). Youngner et al. do not separate the nurses' concepts of death from that of the physicians'. Ninety-five percent of the total participants personally believed patient A was dead, 38% indicated that patient B who was vegetative also was dead, 4% rejected defining death on the basis of brain function and considered both patients A and B to be alive. However, there were a variety of reasons for participants believing patient A or patient B was dead. These included loss of consciousness and cognition, personhood, capacity for social interaction, ability to function as a whole, and ability to regulate bodily functions (Youngner et al. , 1989). Interestingly, although ICU Nurses and the Brain Dead Patient 23 some respondents believed that patients A and/or B were dead, they "gave explanations suggesting that they really believed the patients were still alive, eg, 'the patient's quality of life is not acceptable,' the patient is hopelessly dying,' and the brain cannot be replaced'" (Youngner, 1989, p.2207). Youngner et al. (1989) concludes that: health professionals have personal concepts of death that vary widely and are often confused and/or self-contradictory . . . Conf usion about the real status of potential donors (ie. whether they are dead or alive) may contribute to the emotional discomfort of those who must manage them in the intensive care unit or the operating room. (p.2210) A shortcoming of Youngner's study is that it is unknown how many of the nurses have actually provided care to brain dead patients. In addition, his study participants were selected for their potential to become involved with organ donors, therefore, his findings and conclusions may not be generalizable to nurses who provide care to brain dead patients who do not become organ donors. The Nurse and the Dying Patient in an Intensive Care Setting It is documented that ICU nurses have difficulty accepting death (Caughill, 1976; Lippincott, 1979; Quint, 1966). A component of Quint's (1966) exploratory investigation of dying included determining how the social ICU Nurses and the Brain Dead Patient 24 structure of an intensive care unit influenced the composure strategies of the nurses. It was noted that these nurses work in an environment where there is overpowering emphasis placed on life-sustaining measures and recovery. Consequently, they view their role as primarily being one of life saving and when death occurs they "are faced with the reality of professional failure" (Quint, 1966, p. 51). This failure to save a patient results in feelings of negligence and "to forestall any accusation of negligence - from themselves, other staff members, or the patient's family -nurses in this setting tend to work very hard to prolong life even when these activities may be of little use" (Quint, 1966, p.53). Quint (1966) also found that though the intensive care unit nurses tended to rationalize the patient's death, they were very vulnerable to the impact of a "high social loss death", such as a young person's death, or to a lingering death or a death which is personally disturbing. In addition, if the patient has been in the unit for any period of time, the established contact with the patient and family results in "personal involvement which is intensified when the nurse learns that the patient will die" (Quint, 1966, p. 52) . Quint (1966) views dying as a passage from living to death, which may involve one or more of four transitional stages (1) certain death at known time, (2) certain death at ICU Nurses and the Brain Dead Patient 25 unknown time, (3) uncertain death but known time, and (4) uncertain death and uncertain time. She emphasizes that it is not necessary to pass through each status passage. Such is the case of the individual who at the moment of being diagnosed as brain dead jumps from the category of uncertain death and uncertain time to certain death at known time. Walker (1985) suggests that it is this jump from a living being status to a brain dead status which results in a difficult psychological adjustment for the nurse as her nursing interventions which were only minutes before directed at a living being are now aimed at a "corpse being futilely and uselessly ventilated" (p. 136). Caughill (1976), reiterates much of the preceding discussion in her book which is based on anecdotal notes and findings in the literature. In addition, she indicates that the low patient to staff ratio and the almost continuous demand for nursing care that keeps the nurse at the bedside, fosters a close nurse-patient-family relationship. From this relationship, a growing social story evolves and the patient becomes an unique person. Therefore, death becomes a personal loss and a personal failure (Caughill, 1976). The above authors provide a substantial and valid body of knowledge regarding the reactions of intensive care nurses to the human experience of dying. The question still remaining is, how do ICU nurses perceive caring for a patient who is not dying but is dead? ICU Nurses and the Brain Dead Patient 26 The Nurse and the Brain Dead Patient The literature review on nursing and the brain dead patient reveals a paucity of studies pertaining to the experience of nurses caring for these patients. In addition to a questionnaire on brain death (Borozny, 1988), there are three anecdotal reports (Goldsmith & Montefusco, 1985; Lippincott, 1979; Youngner et al. , 1985), and one study (Sophie, Salloway, Sorock, Volek & Merkel, 1983) which focus on nursing reactions to caring for the small subgroup of brain dead patients that become organ donors. Goldsmith and Montefusco (1985) support the viewpoint that intensive care nurses have a strong commitment to saving life and regard the diagnosis of brain death as a personal and a professional failure. They also notes that the "nurses who care for cadaver donors receive little immediate reward and rarely see the outcome of their efforts" (Goldsmith & Montefusco, 1985, p. 24). This statement is supported by an ICU nurse who indicated "For us organ donation is not rewarding as our part is sending the patient to the O.R. never to return" (Borozny, 1988, p. 40). This lack of satisfaction seen in association with the care of the brain dead is viewed by Lippincott (1979) as a source of both personal and professional stress for the ICU staff. He states also that a focus "for the management of stress is the development of congruent personal and organizational (unit) goals" (Lippincott, 1979, p.1095). ICU Nurses and the Brain Dead Patient 27 However, he believes that in the area of brain death and the prolonged use of life-support systems, there may be high discordance between the staff and the institution as their goals may be different. "For example, some people ascribe [sic ] to a sanctity of life at all costs while others advocate therapy only if intellectual capacity may be preserved" (Lippincott, 1979, p. 1095). Youngner et al. (1985) indicate that there exists a need to pay more attention to the effects that care of the brain dead donor has on the attending nurses in the ICU and the operating room. They list a number of factors which make the provision of care difficult even if the nurse on an intellectual level understands and accepts the concept of brain death. First, the patients although dead, look alive - they are warm, retain a healthy colour, and visceral functions continue. Second, the same technological methods used for the living are employed and the patient's welfare no longer provides the rationale for these aggressive measures. As an example of the potential confusion which may follow, Youngner, points out that if the donor has a cardiac arrest, resuscitation is considered essential, "whereas a 'do not resuscitate' order may have been written for a living patient in the next bed" (Youngner et al., 1985, p. 321). Third, feelings of the nurses may be exacerbated by interactions with family members, "who are often less intellectually and emotionally prepared to accept ICU Nurses and the Brain Dead Patient 28 the finality of death in the face of so much apparent life" (Youngner et al. , 1985, p. 321). Fourth, the brain dead donors are often the young who were in good health but became victims of sudden, unexpected accidents or medical catastrophes. Fifth, the organ retrieval process may represent moral problems for the nurse. As part of a descriptive study to explore the cognitive and emotional aspects on intensive care nurses of cadaver organ procurement, Sophie et al. (1983), distributed a questionnaire to 560 ICU nurses employed in 27 hospitals. Part of this survey asked the nurses to describe their feelings regarding participation in the nursing care of cadaver donors and their families. Of the 312 nurses (55.7%) who returned the questionnaire only 245 (78.5%) responded to this question. Thirty-two percent of these respondents indicated that providing care to a potential cadaver organ donor did not bother them, 25% described the care as a rewarding experience and worthwhile activity because it helped another person, 21% found the experience emotionally draining, 12% were concerned that added stress was placed on the family and 5% found the care difficult when the donor was young. One nurse who found the care did not bother her stated "I no longer think of them (potential cadaver organ donors) as people, but as objects for salvaging parts - like a junk yard of cars" (Sophie et al. , 1983, p. 264). ICU Nurses and the Brain Dead Patient 29 A major limitation of the work by Sophie and her colleagues (1983) is that only 44.3% of the respondents had actual nursing experience in the care of a potential organ donor. Consequently, a large number of respondents who described their feelings regarding care of the cadaver donor were not speaking from actual clinical experience. Borozny (1988) used a questionnaire with a five point Likert Scale to obtain responses to questions on brain death from intensive care nurses. Eighty-two percent of the respondents indicated they found caring for a brain dead patient emotionally and physically demanding, while 14% were ambivalent and 4% did not find the provision of care emotionally or physically demanding. These findings are at variance with those of Sophie's and her colleagues, however, this is possibly due to the difference in the studies. Sophie's study focused on the care of brain dead patients who were to be organ donors, whereas, Borozny's study simply looked at the care of brain dead patients. Perhaps nurses view the care of the brain dead differently if organs are to be donated. In addition, Borozny's study (1988) found that 84% of the respondents stated that supporting the family and friends of the brain dead patient was more demanding than caring for the brain dead patient. Some of the general comments included the following: ICU Nurses and the B r a i n Dead P a t i e n t 30 - I f i n d c a r i n g f o r a b r a i n dead p a t i e n t i s e m o t i o n a l l y and p h y s i c a l l y demanding depending on circumstances -eg. age of p a t i e n t , s o c i a l s i t u a t i o n , whether or not p a t i e n t w i l l be a donor. - I f i n d i t d i f f i c u l t to r a t i o n a l i z e some of the care that we give - Why? - What i s the point? I r e a l i z e that we can say . . . w e l l - we don't know the a c t u a l outcome. I b e l i e v e i n QUALITY of l i f e . There are times when i t i s very c l e a r what the r e s u l t w i l l be and we s t i l l work so DAMN hard! - Perhaps a second nurse could spend time with the fam i l y members and e x p l a i n WHY we spend so much energy and time m a i n t a i n i n g BP, temperature, K+ and u r i n e output replacements, and the pros and cons of organ donation. Family members don't seem to understand BRAIN DEATH when the p a t i e n t LOOKS l i k e he i s j u s t s l e e p i n g and they s t i l l see a BP and u r i n e output, e t c . (p.39) Although t h i s q u e s t i o n n a i r e used closed-ended questions and the w r i t t e n q u e s t i o n n a i r e format did not permit the author to ask f o r c l a r i f i c a t i o n or e l a b o r a t i o n of responses, the 60% response r a t e and the general comments o f f e r e d by the respondents i n d i c a t e ICU nurses do have an i n t e r e s t i n and some strong f e e l i n g s r egarding the b r a i n dead p a t i e n t . N e v e r t h e l e s s , a more i n depth study i s r e q u i r e d to f u l l y understand from the p e r s p e c t i v e of the nurse the meaning ICU Nurses and the Brain Dead Patient 31 attached to caring for the brain dead patient. The questionnaire did not d i f f e r e n t i a t e between nurses who had provided care to brain dead patients and those who had no experience with these patients. Summary In this chapter l i t e r a t u r e pertinent to the conceptualization of the problem statement has been reviewed. The concerns necessitating the redefining of death based on the concept of i r r e v e r s i b l e loss of brain function were stated. The development of the c r i t e r i a for determination of brain death and their recognition by health care professionals and the legal community was outlined. This was followed by a review of a study indicating that conceptual confusion regarding brain death exists amongst health care professionals. Literature s p e c i f i c to the nurse and the dying patient in an intensive care setting indicates these nurses have d i f f i c u l t y accepting death and view i t as a personal loss and f a i l u r e . Writings regarding the actual experience of nurses caring for a brain dead patient are scarce and are largely anecdotal. L i t t l e has been documented about the nurse's subjective perceptions of providing care to the brain dead patient. Studying the experience of providing care to the brain dead patient from the perspective of the intensive care unit nurse i s important in order to f i l l a void in our existing ICU N u r s e s and t h e B r a i n Dead P a t i e n t 32 knowledge. The f i n d i n g s may be u s e f u l i n g u i d i n g t h e d i r e c t i o n o f e d u c a t i o n and s u p p o r t programs f o r n u r s e s d e v e l o p e d by h o s p i t a l s or by n u r s i n g a s s o c i a t i o n s . The f i n d i n g s may a l s o have s i g n i f i c a n c e f o r the e s t a b l i s h m e n t and o n g o i n g d e v e l o p m e n t of h o s p i t a l and p r o v i n c i a l t r a n s p l a n t a t i o n p r o g r a m s . ICU Nurses and the Brain Dead Patient 33 CHAPTER 3: METHODOLOGY Phenomenology was the research method used for this study. Because the intent of this research method is "to understand the lived experience of people" (Anderson, 1989, p. 25) it was considered to be the most appropriate methodology for determining the meaning intensive care unit nurses attach to their caring for the brain dead patient. This chapter will describe the implementation of the phenomenological method for this study. The selection of participants, ethical considerations, data collection and analysis will also be addressed. Selection of Participants The inability of probability sampling to derive information about the meaning of a construct (Morse, 1986) and the investigator's interest in making sense of the experience of nurses caring for the brain dead patient meant that a random sample was not appropriate. Therefore, a nonprobability sample which facilitated understanding was used (Morse, 1986). Ideally, the study sample should have been drawn from a population living the experience of the phenomena under investigation (Oiler, 1982). However, it was necessary to relax this criterion as the number of brain dead patients at any given time is unpredictable. Therefore, for this research, the study sample included intensive care nurses who were either caring for or had cared for a brain dead ICU Nurses and the Brain Dead Patient 34 patient. Besides having experienced caring for the brain dead patient, nurses who were "good informants", that is articulate, reflective, and willing to share with the interviewer were selected (Morse, 1989). It was essential that the informants be not only knowledgeable but also receptive in order to "maximize opportunities to obtain the most insightful data possible" (Morse, 1986, p. 183). The exact sample size was not determined before hand because in qualitative research sampling and data collection does not cease until "the theory is complete, does not have gaps, makes sense, and has been confirmed" (Morse, 1986, p. 184). In addition, the large volume of transcribed interviews requiring analysis of necessity limited the number of informants (Morse, 1986). Due to an inability to determine in advance how well the individuals could address the topic, a convenience sample of eleven ICU nurses who were available and wanted to participate in the study was obtained. Criteria for Selection Participants for this study were recruited from two hospitals (Hospital A and Hospital B) within the greater Vancouver area. These two hospitals were selected as they are known to have the highest number of solid organ donors within the province (Pacific Organ Retrieval for Transplantation, 1988) and therefore a substantial number of nurses caring for brain dead patients. For the purpose of ICU Nurses and the B r a i n Dead P a t i e n t 35 t h i s s t u d y , the p a r t i c i p a n t s were r e q u i r e d to meet the f o l l o w i n g c r i t e r i a : 1. to be a r e g i s t e r e d nurse c u r r e n t l y working i n the i n t e n s i v e care u n i t of one of the i d e n t i f i e d h o s p i t a l s 2. to have at l e a s t one year work e x p e r i e n c e i n the ICU 3. to have p r o v i d e d care f o r at l e a s t one b r a i n dead p a t i e n t w i t h i n the l a s t year The f i r s t c r i t e r i o n was e s t a b l i s h e d to exc lude o ther i n t e n s i v e care u n i t s t a f f ( i e . s tudent n u r s e s , r e s i d e n t s ) i n order to m a i n t a i n a homogeneous sample. The second requirement was i n c l u d e d to ensure that the f i n d i n g s were not t a i n t e d by e x p e r i e n c e s r e l a t e d to the p r e s s u r e s of a new j o b . The f i n a l c r i t e r i o n was necessary to a v o i d o b t a i n i n g o p i n i o n s from nurses who have not l i v e d the e x p e r i e n c e of c a r i n g f o r the b r a i n dead p a t i e n t . The time frame of one year was to ensure that the e x p e r i e n c e had not been too f a r i n the d i s t a n t past and to p r o v i d e a l a r g e enough group of nurses to sample . Because i t i s unknown whether the e x p e r i e n c e of a nurse who has cared f o r two or more b r a i n dead p a t i e n t s i s any d i f f e r e n t than a nurse who has cared f o r only one, no set number of b r a i n dead p a t i e n t s was e s t a b l i s h e d . However, t h i s datum was i n c l u d e d i n the background i n f o r m a t i o n o b t a i n e d from the i n f o r m a n t s . ICU Nurses and the B r a i n Dead P a t i e n t 36 S u b j e c t S e l e c t i o n P r o c e d u r e F o l l o w i n g a p p r o v a l of the U n i v e r s i t y of B r i t i s h Columbia's B e h a v i o u r a l S c i e n c e s S c r e e n i n g Committee and the r e s e a r c h committees of the t a r g e t h o s p i t a l s , r e c r u i t m e n t of i n f o r m a n t s began. The r e s e a r c h e r approached the Head Nurses of the i n t e n s i v e c a r e u n i t s to e x p l a i n the s t u d y , answer any of t h e i r q u e s t i o n s and o b t a i n p e r m i s s i o n to p r e s e n t the study a t a s t a f f meeting. At each s t a f f meeting the purpose of the study and the methodology was e x p l a i n e d . O p p o r t u n i t y was p r o v i d e d f o r the nurses to r a i s e q u e s t i o n s . At H o s p i t a l A a l e t t e r (see Appendix B.) e x p l a i n i n g the study and r e q u e s t i n g p a r t i c i p a t i o n was d i s t r i b u t e d to the m a i l b o x of each ICU n u r s e . At H o s p i t a l B where the ICU nurses d i d not have i n d i v i d u a l m a i l b o x e s the Head Nurse v o l u n t e e r e d to d i s t r i b u t e the l e t t e r s . A copy of the l e t t e r was p l a c e d i n each u n i t ' s communication book or on the b u l l e t i n board. The l e t t e r a l s o c o n t a i n e d i n f o r m a t i o n r e g a r d i n g how to c o n t a c t the r e s e a r c h e r i f t h e r e was i n t e r e s t i n p a r t i c i p a t i n g i n the s t u d y . At the r e q u e s t of the D i r e c t o r of N u r s i n g a t H o s p i t a l B an addendum to the l e t t e r of i n f o r m a t i o n which r e q u e s t e d p a t i e n t c o n f i d e n t i a l i t y was c i r c u l a t e d to a l l p a r t i c i p a n t s (see Appendix C ) . Immediately f o l l o w i n g the s t a f f meeting a t H o s p i t a l A the r e s e a r c h e r was approached by two ICU n u r s e s who i n d i c a t e d an i n t e r e s t i n the s t u d y . Arrangements were made ICU Nurses and the B r a i n Dead P a t i e n t 37 to meet with each during t h e i r next s h i f t to review the study and o b t a i n consents. At that time two a d d i t i o n a l nurses from H o s p i t a l A approached the i n v e s t i g a t o r and a l s o signed consent forms. Approximately two weeks a f t e r the s t a f f meeting, when the i n v e s t i g a t o r returned to the ICU at H o s p i t a l A to c i r c u l a t e a f o l l o w up l e t t e r the f i f t h and s i x t h nurse i n d i c a t e d a d e s i r e to be part of the study. At a week f o l l o w i n g the s t a f f meeting at H o s p i t a l B no p a r t i c i p a n t s had come forward. The Head Nurse was contacted to determine i f another meeting was r e q u i r e d or simply a f o l l o w up l e t t e r . She i n d i c a t e d she would determine i f there was i n t e r e s t by her s t a f f i n the study. Her f i n d i n g s i n d i c a t e d that the s t a f f were i n t e r e s t e d but some assumed they had waited too long to p a r t i c i p a t e . Another problem she d i s c o v e r e d was that the i n v e s t i g a t o r ' s pager number was not working. Within a week f o l l o w i n g the Head Nurse's i n q u i r i e s f i v e ICU nurses from H o s p i t a l B i n d i c a t e d a d e s i r e to be i n v o l v e d i n the study. A t w e l f t h nurse had contacted the i n v e s t i g a t o r by phone and a f t e r d i s c u s s i o n of the study had agreed to p a r t i c i p a t e . A time was arranged f o r the f i r s t meeting, however, t h i s meeting was c a n c e l l e d due to i l l n e s s of the nurse who was then to contact the i n v e s t i g a t o r once she was b e t t e r . No f u r t h e r word was heard from t h i s nurse. ICU Nurses and the B r a i n Dead P a t i e n t 38 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 A l l p a r t i c i p a n t s were female. Two were between the ages of twenty and t h i r t y , e i g h t were between the ages of t h i r t y - o n e and f o r t y , and one was over f o r t y years of age. A l l of the nurses were Caucasian and with the exception of two were born i n Canada. One was born i n New Zealand and had l i v e d i n Canada f o r eighteen years and a second was born i n C h i l e and had been i n Canada f o r the l a s t s i x t e e n years. The p a r t i c i p a n t s i n d i c a t e d t h e i r r e l i g i o n s as f o l l o w s : A n g l i c a n (2), P r e s b y t e r i a n ( 1 ) , P r o t e s t a n t ( 4 ) , Roman C a t h o l i c ( 2 ) , United ( 1 ) , and no r e l i g i o u s a s s o c i a t i o n s ( 1 ) . P a r t i c i p a n t s ' years of experience i n nursing ranged from s i x to twenty years and years of experience i n i n t e n s i v e care nursing ranged from four to twenty years. One p a r t i c i p a n t was an A s s i s t a n t Head Nurse and the remainder were s t a f f nurses. Of the ten s t a f f nurses four d i d r o t a t i o n s that i n c l u d e d f u n c t i o n i n g as charge nurse of the i n t e n s i v e care u n i t . Two nurses with nine and twenty years of experience had worked only i n i n t e n s i v e care u n i t s . One nurse had p r e v i o u s l y worked i n a r e n a l u n i t , the op e r a t i n g room and the case room. T h i s p a r t i c i p a n t ' s husband had a l s o had a kidney t r a n s p l a n t and she i n d i c a t e d " t h i s was the reason I thought w e l l maybe my side of the s t o r y i s a d i f f e r e n t s i d e of the s t o r y . " ICU Nurses and the B r a i n Dead P a t i e n t 39 Seven nurses had p r e v i o u s e x p e r i e n c e i n m e d i c a l s u r g i c a l a r e a s . Of these seven two had worked i n n e u r o l o g y , one i n c o r o n a r y c a r e and one i n c a r d i a c s u r g e r y . One nurse had e x p e r i e n c e i n i s o l a t i o n and t o t a l p a r e n t a l n u t r i t i o n . A l l of the p a r t i c i p a n t s were diploma graduates from e i t h e r two year c o l l e g e programs or t h r e e year h o s p i t a l programs. Two were working on a p a r t time b a s i s towards t h e i r b a c c a l a u r e a t e degree i n n u r s i n g . A t h i r d a f t e r a year of a b a c c a l a u r e a t e n u r s i n g program had s w i t c h e d to an o c c u p a t i o n a l h e a l t h n u r s i n g program. F i v e n u r s e s were gra d u a t e s of i n t e n s i v e c a r e or c r i t i c a l c a r e c o u r s e s . One p a r t i c i p a n t had a t t e n d e d an i n t e r n a t i o n a l t r a n s p l a n t seminar. Three p a r t i c i p a n t s had a t t e n d e d seminars sponsored by the P a c i f i c Organ R e t r i e v a l f o r T r a n s p l a n t a t i o n and one had a t t e n d e d a one day seminar on b r a i n d e a t h . Each p a r t i c i p a n t was asked to e s t i m a t e the number of b r a i n dead p a t i e n t s to whom she had p r o v i d e d c a r e . One nurse had c a r e d f o r between two to f i v e b r a i n dead p a t i e n t s , f o u r had p r o v i d e d c a r e f o r s i x to ten b r a i n dead p a t i e n t s , and s i x had c a r e d f o r more than ten b r a i n dead p a t i e n t s . E t h i c s and Human R i g h t s Measures to a s s u r e p r o t e c t i o n of the r i g h t s of the i n f o r m a n t s began when p e r m i s s i o n to conduct the study was sought from the U n i v e r s i t y of B r i t i s h Columbia's B e h a v i o u r a l S c i e n c e s S c r e e n i n g Committee and the r e s e a r c h committees of the h o s p i t a l s . To ensure the p a r t i c i p a n t s ' r i g h t to ICU Nurses and the B r a i n Dead P a t i e n t 40 informed consent a l l were given a l e t t e r of i n f o r m a t i o n which explained the i n t e n t of the study (see Appendixes B and C) and an o p p o r t u n i t y to r a i s e any questions or concerns. Any concerns that arose during the study were addressed immediately. I n i t i a l consent was obtained v e r b a l l y from the p a r t i c i p a n t s when they i n d i c a t e d a d e s i r e to p a r t i c i p a t e i n the study. At the time of the f i r s t meeting a formal w r i t t e n consent was obtained (see Appendix D). The w r i t t e n consent form contained the f o l l o w i n g elements which F i e l d and Morse (1985) and Sweezy (1983) have i d e n t i f i e d as being e s s e n t i a l i n the conduct of r e s e a r c h : (1) an e x p l a n a t i o n of the study i n c l u d i n g purpose, taping of i n t e r v i e w s , number and d u r a t i o n of i n t e r v i e w s , (2) assurance of c o n f i d e n t i a l i t y and that only anonymous quotes would be used i n any p u b l i c a t i o n , (3) a statement i n d i c a t i n g that the study would h o p e f u l l y heighten awareness about nurses' experiences with the b r a i n dead p a t i e n t , (4) an i n d i c a t i o n that the p a r t i c i p a n t was f r e e to r e f u s e to answer any q u e s t i o n without penalty, and (5) an i n d i c a t i o n that the p a r t i c i p a n t was f r e e to withdraw from the study at any time or withdraw some or a l l data provided without p e n a l t y . Data C o l l e c t i o n Procedure f o r Data C o l l e c t i o n The f i r s t meeting with four p a r t i c i p a n t s i n v o l v e d d i s c u s s i o n of the r e s e a r c h t o p i c , reviewing the w r i t t e n ICU N u r s e s and the B r a i n Dead P a t i e n t 41 c o n s e n t , a n s w e r i n g q u e s t i o n s t h a t were pos e d , o b t a i n i n g d e m o g r a p h i c and b a c k g r o u n d i n f o r m a t i o n and a r r a n g i n g a t i m e and p l a c e f o r f u t u r e m e e t i n g s . F o r two p a r t i c i p a n t s t h e s e e v e n t s o c c u r r e d o v e r the t e l e p h o n e . F o r the r e m a i n i n g f i v e n u r s e s t h e s e s t e p s t o o k p l a c e a t the time o f t h e f i r s t i n t e r v i e w . A l l p a r t i c i p a n t s s e l e c t e d t h e s i t e f o r the i n t e r v i e w s . F o u r o f t h e e l e v e n had t h e f i r s t i n t e r v i e w s c o n d u c t e d i n t h e i r homes. The r e m a i n d e r c h o o s e t o be i n t e r v i e w e d a t t h e i r e m p l o y i n g a g e n c y . At t h e s t a f f m e e t i n g s the head n u r s e s had i n d i c a t e d t h a t p e r m i s s i o n was g r a n t e d f o r the i n t e r v i e w s to be c o n d u c t e d d u r i n g s c h e d u l e d w o r k i n g h o u r s . A l l s e c o n d and t h i r d i n t e r v i e w s a t the p a r t i c i p a n t s ' r e q u e s t were s c h e d u l e d a t t h e e m p l o y i n g a g e n c y . The f i r s t i n t e r v i e w and s u b s e q u e n t ones were s e m i -s t r u c t u r e d i n t h a t open-ended t r i g g e r q u e s t i o n s were used t o g u i d e t h e p r o c e s s ( s e e A p p e n d i x E ) . A l l i n t e r v i e w s were a u d i o - t a p e d . E a c h o f the e l e v e n n u r s e s p a r t i c i p a t e d i n i n i t i a l i n -d e p t h i n t e r v i e w s . The i n t e n t i o n o f t h e r e s e a r c h e r was t o t h e n e s t a b l i s h a t h e o r e t i c a l sample by d e l i b e r a t e l y s e l e c t i n g n u r s e s f o r t h e i r a b i l i t y to speak to t h e e x p e r i e n c e . Though t h r e e o f the i n f o r m a n t s were f e l t n o t t o be as e x p r e s s i v e as t h e o t h e r s , t h e i n v e s t i g a t o r f e l t t h e r e were a r e a s w i t h e a c h t h a t needed t o be p u r s u e d i n g r e a t e r d e p t h . T h e r e f o r e a l l e l e v e n p a r t i c i p a n t s were i n t e r v i e w e d a ICU Nurses and the Brain Dead Patient 42 second time. Third interviews to validate the researcher's analysis of the data were scheduled with six of the informants who could best address the experience. Ten of the initial interviews lasted from 45 to 90 minutes. One initial interview lasted only 30 minutes. The second interviews ranged from 30 to 90 minutes. One of the second interviews ended prematurely as the participant was called back to the bedside. It was continued eight days later. The third interviews ranged from 30 minutes to 60 minutes. A total of 28 interviews were conducted over 17 weeks. Data analysis began with the first reading of the initial transcription and was an ongoing process throughout the data collection. Data Analysis As soon as possible following the interview each tape was transcribed verbatim. Then the tape was replayed to check the transcription for accuracy and to add notations regarding changes in voice, significant pauses and inflections (Field & Morse, 1985). The entire transcription was then read to obtain a sense of the whole (Giorgi, 1975a, 1975b; Knaack, 1984). Next the transcript was reviewed to highlight areas not understood or which need further elaboration (J. Anderson, personal communication, January 30, 1989). The interview was then read more slowly to delineate transitions in meaning (Giorgi, 1975a, 1975b; ICU Nurses and the Brain Dead Patient 43 Knaack, 1984). These meaning units are "intended to single out participants' verbal productions as a significant unit of comprehension in itself" (Lofland, 1971) and must remain faithful to the original data (Knaack, 1984; Riemen, 1986). The above process was repeated for each interview and the resulting aggregate of meaning units was organized into clusters of themes (Knaack, 1984; Riemen, 1986). These themes were then referred back to the original descriptions in order to validate them and to determine the existence of any contradictory themes. The results of this analysis forms the exhaustive description of the experience of caring for the brain dead patient, which has become the statement identifying the essential structure of the phenomenon (Knaack, 1984; Riemen, 1986). The final step was to ask six informants if the description formulated accurately described their experience (Knaack, 1984; Riemen, 1986). Chapter Four by exploring the nurses' accounts of providing care for the brain dead patient illustrates the development of this description. Summary The phenomenological perspective of qualitative research theory guided the methodological approach for this study. This chapter describes how that perspective was interpreted and implemented in the selection of participants, and collection and analysis of data. Nonprobability sampling was used in order to obtain experts ICU N u r s e s and t h e B r a i n Dead P a t i e n t 44 who had l i v e d t h e e x p e r i e n c e o f p r o v i d i n g c a r e f o r t h e b r a i n dead p a t i e n t . D a t a were c o l l e c t e d t h r o u g h i n - d e p t h i n t e r v i e w s , and a n a l y s i s o c c u r r e d c o n c u r r e n t l y . 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 were v a l i d a t e d w i t h s i x p a r t i c i p a n t s . The r e s u l t s o f t h i s i n t e r a c t i v e p r o c e s s a r e p r e s e n t e d i n t h e n e x t c h a p t e r . ICU Nurses and the B r a i n Dead P a t i e n t 45 Chapter 4: THE PARTICIPANTS' ACCOUNTS I n t r o d u c t i o n The s t u d y ' s f i n d i n g s which d e s c r i b e the s u b j e c t i v e exper i ence of c a r i n g f o r a b r a i n dead p a t i e n t are presented i n t h i s c h a p t e r . The f i n d i n g s r e p r e s e n t a c o l l a b o r a t i v e e f f o r t between r e s e a r c h e r (R) and p a r t i c i p a n t s (P) to determine the meaning a t t a c h e d to the p r o v i s i o n of n u r s i n g care to the b r a i n dead p a t i e n t . Whi le each p a r t i c i p a n t p r o v i d e s a d i s t i n c t i v e account of the e x p e r i e n c e , i n - d e p t h comparat ive a n a l y s i s of the i n t e r v i e w s and the d e r i v e d meaning u n i t s r e v e a l s a common theme woven throughout the d e s c r i b e d p e r s o n a l e x p e r i e n c e s . T h i s u n i f y i n g theme i s one of d i s s o n a n c e . I t d e s c r i b e s the e s s e n t i a l s t r u c t u r e of the e x p e r i e n c e of c a r i n g f o r a b r a i n dead p a t i e n t . The f o l l o w i n g s e c t i o n s of t h i s chapter w i l l address the c o n c e p t u a l i z a t i o n of d i s sonance f o r the study and w i l l present 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 the a c c o u n t s . Dissonance as the E s s e n t i a l S t r u c t u r e of P r o v i d i n g Care to the B r a i n Dead P a t i e n t C o n c e p t u a l i z a t i o n of Dissonance A s t r i k i n g f e a t u r e of the i n d i v i d u a l p a r t i c i p a n t s ' accounts i s the e x i s t e n c e of s tatements i n d i c a t i n g c o n f l i c t between two p e r s o n a l b e l i e f s , p e r c e p t i o n s , or o p i n i o n s . A l t e r n a t i v e l y a p e r s o n a l l y h e l d b e l i e f , p e r c e p t i o n , or o p i n i o n sometimes c o n t r a d i c t s the p a r t i c i p a n t ' s knowledge or a c t i o n . ICU Nurses and the Brain Dead Patient 46 The accounts of two participants indicate a recognition of these incongruities. P. I have trouble relating the two or the family has trouble relating the two [in reference to saying the patient is dead and at the same time trying to maintain the patient's blood pressure]. P. I thought about that after I said that and I think I probably contradicted myself a little bit in there when I said that...I think a lot of times even our thinking contradicts us. Festinger (1957) describes these inconsistencies as cognitive dissonance. He indicates that his theory of cognitive dissonance is built upon "the notion that the human organism tries to establish internal harmony, consistency, or congruity among his opinions, attitudes, knowledge, and values. That is, there is a drive toward consonance among cognitions" (Festinger, 1957, p. 260). However, besides this internal or personal dissonance, the participants also describe situations where their personal beliefs, perceptions, opinions, knowledge and behaviours oppose those of individuals with whom they interact. This lack of external harmony represents an interpersonal form of dissonance which may occur between the nurse and the patient's family members, the physicians, the Pacific Organ Retrieval for Transplantation (PORT) Team and nursing colleagues. Though the existence of this interpersonal dissonance makes Festinger's concept of cognitive dissonance insufficient to describe the phenomenon ICU Nurses and the B r a i n Dead P a t i e n t 47 of c a r i n g f o r the b r a i n dead p a t i e n t , the r e s e a r c h e r f e e l s i t does provide a s t a r t i n g p o i n t . In order to formulate a concept of dissonance which would remain true to the d e s c r i b e d i n d i v i d u a l experiences f u r t h e r contemplation and c o n j e c t u r e were r e q u i r e d . The term dissonance i n r e f e r e n c e to music r e f e r s to the "simultaneous combination of tones that seem to c l a s h and r e q u i r e r e s o l u t i o n " ( A v i s , 1986, p. 386). S i m i l a r l y , as the t r a n s c r i p t s i n d i c a t e , each p a r t i c i p a n t may possess c o e x i s t i n g b e l i e f s , o p i n i o n s , and values which may c l a s h with each other or with her own knowledge and a c t i o n s . In a d d i t i o n , these personal thoughts and a c t i o n s may c l a s h with those that are held c o n c u r r e n t l y by o t h e r s . T h e r e f o r e , dissonance as d e f i n e d f o r t h i s study i s d e r i v e d from F e s t i n g e r ' s theory and the musical i n t e r p r e t a t i o n of the word. Dissonance i s the c l a s h i n g of c o e x i s t i n g b e l i e f s , p e r c e p t i o n s , v a l u e s , o p i n i o n s , knowledge and a c t i o n s w i t h i n one's s e l f ( p e r s o n a l dissonance) or between one's s e l f and another ( i n t e r p e r s o n a l d i s s o n a n c e ) . The dissonance culminates i n personal s t r e s s which the p a r t i c i p a n t s d e s c r i b e i n terms such as anger, f r u s t r a t i o n , being " p i s s e d o f f " , being c l o s e to t e a r s , being worn out p h y s i c a l l y , and being e m o t i o n a l l y d r a i n e d . Attempts are made to reduce the dissonance and they i n v o l v e d i s t a n c i n g from the p a t i e n t and/or the nurse d e s i g n a t i n g another as the t a r g e t of her ICU N u r s e s and t h e B r a i n Dead P a t i e n t 48 c a r e . W i t h t h e l a t t e r , t h e p a t i e n t no l o n g e r becomes t h e r e a s o n f o r n u r s i n g c a r e , and t h e f o c u s of c a r e s h i f t s t o a t h i r d p a r t y w h i c h may be t h e p a t i e n t ' s f a m i l y , t h e o r g a n r e c i p i e n t or t h e n u r s e h e r s e l f . A model f o r t h i s framework i s s c h e m a t i c a l l y r e p r e s e n t e d i n f i g u r e 1. V a l i d a t i o n o f t h e C o n c e p t o f D i s s o n a n c e S i x p a r t i c i p a n t s who p a r t i c i p a t e d i n the t h i r d i n t e r v i e w s c o n f i r m e d t h a t d i s s o n a n c e , as d e f i n e d f o r t h i s s t u d y , d e s c r i b e s the e s s e n t i a l s t r u c t u r e of the e x p e r i e n c e o f p r o v i d i n g c a r e t o a b r a i n dead p a t i e n t . The f o l l o w i n g a c c o u n t s o f f i v e o ut o f the s i x p a r t i c i p a n t s c o n t a i n t h e i r t h o u g h t s on d i s s o n a n c e as the u n i f y i n g theme. P. I t h i n k t h a t d e s c r i b e s i t . T h e r e i s a c o n f l i c t t h e r e between what you know l i k e l o o k i n g a f t e r t h e body and whether to t a l k t o i t or n o t . You know e s p e c i a l l y t r y i n g t o t e l l t h e f a m i l y t h a t t h e y a r e dead and th e y see you r u n n i n g a r o u n d l i k e a c h i c k e n . P. I t h i n k you've h i t t h e n a i l r i g h t on the head w i t h t h a t word a c t u a l l y . And w i t h t h a t d e s c r i p t i o n and t h a t i s j u s t a t r u e d e s c r i p t i o n as to how I f e e l a b o u t t h i s . . . i s c l a s h i n g f e e l i n g s a b o u t I know my r e s p o n s i b i l i t y as a n u r s e a t the b e d s i d e but I a l s o know my e m o t i o n a l f e e l i n g s w h i c h I t h i n k i n t h e s e s i t u a t i o n s b e c a u s e o f our p r o f e s s i o n you have t o put on the back b u r n e r b e c a u s e you have a j o b t o do and you have c e r t a i n e x p e c t a t i o n s made of you t h a t i n o r d e r to be f u n c t i o n a l and to be a p r o p e r m e d i c a l team member i n t h i s u n i t t h a t one must d e a l w i t h t h o s e f e e l i n g s l a t e r and b e c a u s e t h e r e i s n ' t t i m e now...And p e r h a p s when you a r e d e s c r i b i n g t h a t p e r h a p s t h a t ' s s o r t o f been a l i t t l e b i t o f t h e t u r m o i l t h a t I g e t i n t o a t t i m e s b e c a u s e I d o n ' t f e e l t h a t I am g i v e n t h a t t i m e to d e a l w i t h them...And I t h i n k what you a r e s a y i n g i s v e r y a c c u r a t e . I t h i n k i t ' s e x c e l l e n t . . . Yeah, y e a h . But t h a t i s an example o f how you end up I t h i n k d e a l i n g a b i t o f c l a s h w i t h t h a t b e c a u s e you a r e l o o k i n g a f t e r ICU Nurses and the B r a i n Dead P a t i e n t 49 F i g u r e 1: THE EXPERIENCE OF PROVIDING CARE TO THE BRAIN DEAD PATIENT IS ONE OF DISSONANCE DISSONANCE PERSONAL INTERPERSONAL PERSONAL DISTRESS ATTEMPTS TO REDUCE DISSONANCE BY: DISTANCING DESIGNATING ANOTHER AS THE TARGET OF NURSING CARE DETACHMENT DEPERSONALIZATION FAMILY TRANSPLANT RECIPIENT NURSE ICU Nurses and the B r a i n Dead P a t i e n t 50 the whole person and then i t becomes as I s a i d organ n u r s i n g . P. I t ' s f a i r l y accurate because i t ' s f a i r l y accurate as f a r as the way that I f e e l towards i t anyway. That there i s a l o t of c l a s h e s and how you f e e l and what i s r e q u i r e d of you to do i n your nu r s i n g r o l e and I think there i s a l o t of e t h i c a l d i f f e r e n c e s . . . Yeah. I think t h a t ' s good. I think that sums up how I r e a l l y f e e l about i t . I t ' s q u i t e a c c u r a t e . P. Yeah l i k e a d i s c o r d or some sort...Yeah I think you've p r e t t y w e l l have got i t . And i t sounds you know that i t c e r t a i n l y r e f l e c t s what I wanted to say. P. I t ' s true because I mean what you say i s very t r u e . Quite o f t e n what you b e l i e v e i n and what you are f o r c e d i n t o doing i s two separate t h i n g s . I mean I don't know i f there i s any way to change t h a t . I t ' s s o r t of t i e d up a b i t i n t o e t h i c s and s o c i e t y ' s values and whatever and the f a c t that o f t e n s o c i e t y i s n ' t aware of what we do. So they are very gung-ho where we see the r e a l i t y of the person and where they're at and know why we should stop. You know maybe the fa m i l y doesn't f e e l l i k e t h a t . So there i s a l o t of reasons why...I think i t i s very r e a l because I mean ah I thin k i n almost everybody we deal with you are going to get, i n terms of our b r a i n dead people, you're going to get some people who agree with them and some people who don't...I mean as I say I have a l o t of ambivalence f o r PORT and yet a l o t of people don't. They're r e a l l y gung-ho on i t . Sure every time we're working you know i t does show up and i n a t t i t u d e s and b e l i e f systems because we t a l k about i t you know. 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 T h i s s e c t i o n w i l l d i s c u s s the f i n d i n g s of the study w i t h i n the framework of dissonance. The p a r t i c i p a n t s ' own words w i l l be used to present the data and b u i l d an ICU Nurses and the B r a i n Dead P a t i e n t 51 exhaustive d e s c r i p t i o n of the experience. Although dissonance i s a major f i n d i n g i n the p a r t i c i p a n t s ' accounts, i t i s important to remember that each informant i s an i n d i v i d u a l who brings an unique p e r s p e c t i v e and system of b e l i e f s and values to the experience. Therefore, not a l l p a r t i c i p a n t s encounter the same i n t e r n a l and e x t e r n a l d i s c o r d . P e r s o n a l Dissonance The p r o v i s i o n of care to a b r a i n dead p a t i e n t can r e s u l t i n personal dissonance o c c u r r i n g i n one or more of f i v e areas. The f i r s t concerns the p a r t i c i p a n t ' s philosophy of what nursing i s and how the p r o v i s i o n of care to a dead p a t i e n t conforms to t h i s philosophy. The second i n v o l v e s the t r a d i t i o n a l n u rsing care a c t i v i t i e s . That i s , what i s a p p r o p r i a t e and i n a p p r o p r i a t e nursing care f o r a dead p a t i e n t ? T h i s s e c t i o n w i l l a l s o look at nursing care of f a m i l y members. The t h i r d c e n t e r s on the concept of b r a i n death and i t s s i g n i f i c a n c e to the p a r t i c i p a n t . The f o u r t h r e v o l v e s around the nurse's b e l i e f s r e g a r d i n g organ r e t r i e v a l and t r a n s p l a n t a t i o n . The f i f t h focuses on the nurse's p r o f e s s i o n a l r e s p o n s i b i l i t i e s and her own emotional needs. Philosophy of n u r s i n g . From the t r a n s c r i p t i o n s i t i s evident that f o r many p a r t i c i p a n t s personal dissonance occurs due to an i n a b i l i t y to r e c o n c i l e t h e i r p ersonal philosophy of what nursing i s ICU Nurses and the B r a i n Dead P a t i e n t 52 with the p r o v i s i o n of care to a b r a i n dead p a t i e n t . The accounts of four p a r t i c i p a n t s i l l u s t r a t e t h i s d i s c r e p a n c y . R. What does nursing mean to you? P. Caring f o r people I guess that are i l l when they're unable to care f o r themselves. R. And i s that d i f f i c u l t to put with c a r i n g f o r the b r a i n dead p a t i e n t ? P. I t should be the same but I don't think i t always i s . R. What would make i t d i f f e r e n t ? P. Cause sometimes you thin k that they should be i n the morgue i n s t e a d of being cared f o r the way they are. Within t h i s excerpt the c o n f l i c t o c c u r r i n g w i t h i n the informant i s obvious i n the statement: " I t should be the same but..." S i m i l a r dissonance i s seen with other p a r t i c i p a n t s . P. I would say a l l i n a l l t a k i n g care of a b r a i n dead p a t i e n t whether they're going to be a donor or not i s d i f f i c u l t . I say i t i s probably one of the hardest p a t i e n t s to take care of i n ICU. They are s t i l l dead no matter how you look at whether they are going to be a donor or whether they're not. And i f you allow y o u r s e l f to think about that i t ' s kind of creepy to think that you are ta k i n g care of t h i s dead p a t i e n t and p e r s o n a l l y I choose to r e a l l y not think about i t . . . B u t I think i t i s a very d i f f i c u l t p a t i e n t . They are s t i l l dead a f t e r a l l and t h a t ' s very d i f f i c u l t e s p e c i a l l y when we're used to ta k i n g care of the l i v i n g and we want to, you know, b r i n g them to that p o i n t of recovery and I guess i t j u s t goes a g a i n s t what we're s o r t of taught. R. What do you think n u r s i n g i s ? P. Well, I thi n k nursing i s ta k i n g care of the p a t i e n t to b r i n g them to a h e a l t h i e r p o i n t . And I guess t h a t ' s why i t goes a g a i n s t what we are taught i n n u r s i n g . I guess t h a t ' s more i t . And we are d e a l i n g with t r y i n g ICU Nurses and the B r a i n Dead P a t i e n t 53 to make them whole. T r y i n g to make them w e l l and you are i n a s i t u a t i o n where tha t ' s not going to happen. One p a r t i c i p a n t r e l a t e s nursing to her pleasure i n communicating with the p a t i e n t and f a m i l y members. However, when the p a t i e n t i s dead there i s no corner stone f o r communication. Communication i s not p o s s i b l e t h e r e f o r e the nurse experiences i n t e r n a l dissonance i f nursing c o n t i n u e s . P. I think I j u s t f i n d that such a grey area of nur s i n g j u s t l o o k i n g a f t e r t h i s BODY that you know the person i s dead so you r e a l l y i t ' s hard to imagine you're not lo o k i n g a f t e r a person. You're l o o k i n g a f t e r a body. R. What does nursing mean to you then? P. I t must have to do with the person being a l i v e . I think I d e r i v e such a s a t i s f a c t i o n i n communicating with the fa m i l y i f you can't communicate with the p a t i e n t . You know I r e a l l y enjoy p a t i e n t s you can communicate with so i f they're b r a i n i n j u r e d and they're not able to communicate with you i t ' s the f a m i l y . A f t e r they're b r a i n dead i t ' s no one. A number of p a r t i c i p a n t s cannot per c e i v e a goal or reason f o r t h e i r nursing care of the b r a i n dead p a t i e n t . T h e i r i n t e r n a l d i s c o r d i s evident i n t h e i r q u e s t i o n i n g . P. So i t i s almost l i k e you know: "Why are we doing t h i s to people? Why are we?" The f a m i l y i s having t r o u b l e enough coping but they s t i l l have hope while you're s t i l l c a r i n g f o r the person. P. I mean you can no longer support the f a m i l y r e a l l y because the p a t i e n t ' s dead. You can't do anything f o r the p a t i e n t i f you b e l i e v e that the p a t i e n t d i e s when they're b r a i n dead i f t h a t ' s what you b e l i e v e which I do. So who are you doing t h i s f o r ? On the other hand i f the b r a i n dead p a t i e n t becomes an organ donor t h i s , f o r some p a r t i c i p a n t s , helps to e s t a b l i s h ICU Nurses and the B r a i n Dead P a t i e n t 54 the e x i s t e n c e of a goal f o r t h e i r c a r e . T h i s end p o i n t to n u r s i n g care then allows consonance to be e s t a b l i s h e d . P. I f they're a donor I think i t makes i t a l i t t l e b i t e a s i e r because you see an end r e s u l t to t a k i n g care of a p a t i e n t . However, t h i s same p a r t i c i p a n t a l s o experiences personal dissonance i f the r e t r i e v a l of organs i s not r e a l i z e d . The s i t u a t i o n she d e s c r i b e s i n v o l v e s a young b r a i n dead p a t i e n t whose f a m i l y had consented to organ donation. But there was a delay i n the coroner's o f f i c e r e l e a s i n g the body and the f a m i l y withdrew t h e i r consent f o r donation. P. She was going to be a donor. They were a c t u a l l y going to take q u i t e a few organs and there was a r e a l mix up i n a l o t of t h i n g s . And I took care of her f o r two days and at the end of that time they d i d n ' t take any organs from her at a l l l i k e not even her eyes. And I found that probably the most f r u s t r a t i n g case that I have ever worked with. I think probably the most emo t i o n a l l y d r a i n i n g . . . I was r e a l l y f r u s t r a t e d . I was worn out p h y s i c a l l y because i t takes a l o t of work. You work r e a l l y hard when you take care of when you t r y and keep somebody going. And I guess that I j u s t thought that a l l my work was i n v a i n . T h i s was a l o t of work and I guess I j u s t geared my energy to the f a c t that somebody was going to be b e n e f i t t i n g . They were going to take a l o t of organs so I was r e a l l y working hard you know to t h i s p o i n t and I j u s t found i t r e a l l y f r u s t r a t i n g . I don't know i f one t h i n g that r e a l l y f r u s t r a t e d me but I remember f e e l i n g r e a l l y c l o s e to t e a r s at the end of that two day time. I j u s t f e l t that i t was a l l i n v a i n f o r nothing and I found that e m o t i o n a l l y d r a i n i n g . I r e a l l y d i d . The preceding t r a n s c r i p t s i l l u s t r a t e the personal dissonance and the r e s u l t i n g p ersonal s t r e s s which occur when the i n d i v i d u a l ' s philosophy about nursing i s incongruent with the act of p r o v i d i n g nursing care to a ICU Nurses and the B r a i n Dead P a t i e n t 55 b r a i n dead p a t i e n t . I f a nurse possesses a philosophy about nur s i n g which i n c l u d e s care of the dead then the p o s s i b i l i t y of i n t e r n a l dissonance ceases. Evidence f o r t h i s i s found i n the f o l l o w i n g d e s c r i p t i o n . P. I t h i n k that nursing i s c a r i n g f o r . Is c a r i n g f o r . I t doesn't matter whether the p e r s o n . . . i f i t ' s a baby that has been born too e a r l y . . . f o u r months, f i v e months and has no hope of l i v i n g and i s born dead. You would s t i l l care f o r that as a l i v i n g person. That's why we bury them. We have ceremonies and we bury them. We t r e a t them with reverence. We work with the f a m i l y with the goal of h e l p i n g them through i t . That's n u r s i n g . So i t works. I t works f o r the whole spectrum through. Nursing i s c a r i n g f o r the whole person and the whole person i n v o l v e s c a r i n g f o r DEATH'. Cause th a t ' s j u s t death i s a part of l i f e . I t j u s t e x i s t s . So I don't know nursing f o r me handles the whole spectrum. I-I can't see that you can separate i t out. While t h i s view did not r e s u l t i n c l a s h e s of personal b e l i e f s , values, o p i n i o n s , p e r c e p t i o n s , knowledge and behaviour, the p a r t i c i p a n t d i d experience i n t e r p e r s o n a l dissonance. T r a d i t i o n a l n u r s i n g care a c t i v i t i e s . A s s o c i a t e d with the p r o v i s i o n of nursing care are c e r t a i n c l e a r l y d e f i n e d a c t i o n s which provide f o r the p a t i e n t ' s p h y s i c a l and p s y c h o l o g i c a l comfort and s a f e t y . When these t r a d i t i o n a l nursing care a c t i v i t i e s are a l s o administered to the dead then i n c o n s i s t e n c i e s between c o g n i t i o n s and behaviour occur. Though the nurse r e c o g n i z e s that p r o v i d i n g f o r comfort and ensuring the p a t i e n t ' s s a f e t y are a c t i o n s which are i n o p p o s i t i o n to her knowledge about death, these behaviours are so deeply i n s t i l l e d that not to ICU Nurses and the B r a i n Dead P a t i e n t 56 do them may cause t u r m o i l . Four p a r t i c i p a n t s address t h i s i s s u e . P. L i k e I went through the motions because l i k e I can't s o r t of I d i d n ' t q u i t e know why I was going through the motions. I t was too i n g r a i n e d i n me. I can only leave them l y i n g so long then I have to turn them. I have to s u c t i o n them to f e e l l i k e I am doing. P. I s t i l l remember we had a b r a i n dead p a t i e n t and t h i s p a t i e n t was the donor a l r e a d y . And we were doing a l l the care f o r the donor. And I think he had an unstable C something f r a c t u r e as well...and we were going to log r o l l him and do sand bags...we were ta k i n g a l l t h i s p r e c a u t i o n s and then one of the nurses s a i d : "Well you don't have to do that anymore you know because he's dead and he doesn't f e e l i t and i t doesn't matter i f the bone gets d i s l o c a t e d or whatever." But i t was a r e a l l y weird f e e l i n g because a l l your t r a i n i n g and a l l your thi n g i s to prevent any f u r t h e r i n j u r y to the p a t i e n t . And at that p o i n t you go "Oh yeah, r i g h t . " But i t ' s j u s t harder because i t ' s not what you're used to doing. P. I thin k i t ' s a very d i f f i c u l t s i t u a t i o n . . . L i k e we are so geared i n ICU I think to doing our l i t t l e tasks and I thin k a l o t of times even our t h i n k i n g c o n t r a d i c t s us. And you have to have a l o t of experience and maybe s o r t out your f e e l i n g s and why you do things and that takes awhile. You don't c a l l them by name yet you're so used to doing these l i t t l e tasks that you do them anyway. And you know they're dead and yet there i s something w i t h i n you that d r i v e s you to take care of t h i s person cause they are s t i l l i n your care and r e a l l y when you think of i t i t makes no sense. T h i s p a t i e n t i s a dead p a t i e n t and why are we doing t h i s ? Sometimes I think i t i s j u s t f o r our own s e l v e s . P. The p a t i e n t would be b r a i n dead when you come on and you could you know ask: "Do you do anything?" I mean they're b r a i n dead, they don't know what you're doing or what you're not doing. But that would be n e g l e c t . L i k e that would s t r i k e me as n e g l e c t i f I j u s t : "That's one b r a i n dead" and j u s t s o r t of turn your back...I ICU Nurses and the B r a i n Dead P a t i e n t 57 guess i t ' s l i k e I'm f e e l i n g that t h i s i s j u s t a con t a i n e r that I am l o o k i n g . a f t e r now and I don't know there i s j u s t a b i t of c o n f l i c t t h e r e . I know that i t i s that there i s no one l i k e there now and yet to j u s t be l i k e . . . i t wouldn't bother me a b i t l i k e I say to comb t h e i r h a i r even though I know they're going to go i n a h a l f an hour to be an organ donor. L i k e I would s t i l l want to do those t h i n g s . And to not I don't know how t o . Many of the informants s t r u g g l e with what c o n s t i t u t e s a p p r o p r i a t e and i n a p p r o p r i a t e n u r s i n g care of the b r a i n dead p a t i e n t . For some the pers o n a l dissonance they experience i s r e l a t e d to a simple act such as t a l k i n g to a p a t i e n t who cannot hear. P. And I a l s o don't know how to t r e a t the person...the donor or the p o t e n t i a l donor or the b r a i n dead person. L i k e you know i f i t ' s J e f f or whatever you say: "Well J e f f I'm going to s u c t i o n y o u " . . . l i k e you would f o r any other unconscious person. But then or I w i l l j u s t t a l k to them but i f the f a m i l y i s there I do not know whether to t a l k to them or not because your say i n g : "Well they're gone. They're dead. There's no hope. There's nothing." But then you s t a r t t a l k i n g to the p a t i e n t ! I mean that i t i s s o . . . i t i s ...I don't know i f double standard i s the r i g h t word but i t give s c o n f l i c t i n g ideas to the f a m i l y . P. Well l i k e the l a s t couple that I have had I found i t awkward when I was t a l k i n g to the p a t i e n t s because i n my mind the p a t i e n t s weren't there anymore but...I t a l k to my p a t i e n t s anyways. And I can remember when I came on that night and I was t a l k i n g to him and I f i n a l l y stopped. And why did I stop I must have f e l t . . . something made me stop t a l k i n g to him... Another p a r t i c i p a n t t a l k s to the b r a i n dead p a t i e n t but her personal dissonance c e n t e r s around the knowledge the p a t i e n t i s dead and the b e l i e f that the p a t i e n t s t i l l might be able to hear. ICU Nurses and the B r a i n Dead P a t i e n t 58 P. I t a l k to them as though they can hear me. They can't they say. but who knows...I t e l l them who I am and what's going on. Maybe i t ' s j u s t i n case I...maybe because I don't r e a l l y know i f they can hear or not. This c l a s h between the nurse's acceptance of the concept of b r a i n dead and her own personal b e l i e f about death w i l l be di s c u s s e d f u r t h e r i n the s e c t i o n addressing the concept of b r a i n death and personal dissonance. The normal e x p e c t a t i o n s of a nurse when she prepares and sends a p a t i e n t to the o p e r a t i n g room are that the p a t i e n t w i l l undergo s u r g i c a l i n t e r v e n t i o n f o r h i s u n d e r l y i n g h e a l t h care problem and f o l l o w i n g a b r i e f stay i n the recovery room he w i l l r e t u r n to h i s nursing u n i t . However, n e i t h e r of these e x p e c t a t i o n s are v a l i d when a b r a i n dead p a t i e n t i s sent to the s u r g i c a l s u i t e s . As evidenced by the f o l l o w i n g t r a n s c r i p t s of two p a r t i c i p a n t s , t h i s a c t i o n of sending a dead p a t i e n t to the o p e r a t i n g room i s viewed as being incongruous with nursing care. P. Because you get very strange f e e l i n g s when you look a f t e r a b r a i n dead person and then you are sending them o f f to the OR and they're warm, they've got a blood pressure and a heart r a t e but you know THAT they are not going to be coming back P. To be l o o k i n g a f t e r a f a m i l y member tha t ' s DEAD and you've t o l d them that maybe i t ' s j u s t a strange t h i n g to be p r o v i d i n g care to someone who you know i s going to take h i s pa r t s away and I guess I can't d i s t a n c e myself enough from that to f e e l comfortable d o i n g . . . i t ' s probably something I'd ra t h e r not do but i t ' s t e c h n i c a l l y and p h y s i c a l l y not a more d i f f i c u l t p a t i e n t to look a f t e r . . . I t ' s p h y s i c a l l y e a s i e r . I t ' s emoti o n a l l y more d i f f i c u l t . . . I keep s t a r i n g at t h i s bed and t r y i n g to v i s u a l i z e a s i t u a t i o n um I think i t ' s ICU N u r s e s and t h e B r a i n Dead P a t i e n t 59 b e c a u s e I d o n ' t r e a l l y t h i n k o f i t as n u r s i n g . Ah maybe t h a t ' s p a r t o f i t . T h e r e i s s o m e t h i n g t h a t ' s a b i t um k i n d o f u n n a t u r a l about i t i n a way. And maybe be c a u s e I would r a t h e r t h a t t h e y were dead l i k e I would r a t h e r l i k e t o be l o o k i n g a f t e r a p a t i e n t b e f o r e t h e b r a i n dead p a r t . I t ' s even ok i f t h e y ' r e b r a i n dead but i t ' s t h e s h i f t , the s h i f t I come on and y o u ' r e w a i t i n g f o r t h e OR and you c o u l d be w a i t i n g 8 h o u r s . P. The f i r s t time i t was w e i r d . I t h o u g h t i t was k i n d o f a g r o s s t h i n g c a u s e you send a c r o s s a warm p e r s o n and n o t h i n g comes back e x c e p t an empty bed. And t h a t i s n ot a no r m a l n u r s i n g t h i n g . The n o r m a l n u r s i n g t h i n g i s you send somebody t o t h e OR and you g e t somebody back. I t j u s t s o r t o f goes w i t h i t , r i g h t ? But you send a p a t i e n t to t h e OR f o r PORT t h a t ' s i t , so the f i r s t t i m e i t was r e a l l y w e i r d b e c a u s e I d o n ' t r e a l l y t h i n k I had t h o u g h t a b o u t what I was a c t u a l l y d o i n g . I was j u s t I mean i t ' s y o u r f i r s t t i m e and you j u s t do t h i s t h i n g . You j u s t f o l l o w i t and t h e n a l l o f a sudden out t h e door he went and t h e door c l o s e d and I t h o u g h t : " T h i s p e r s o n i s n ' t coming b a c k . " Even i f t h e p a r t i c i p a n t i s a s t r o n g a d v o c a t e o f o r g a n r e t r i e v a l and t r a n s p l a n t a t i o n s e n d i n g a b r a i n dead p a t i e n t t o the o p e r a t i n g room i s a s s o c i a t e d w i t h d i s c o r d . F o r i n s t a n c e , one p a r t i c i p a n t who b e l i e v e s t h a t "we have a m o r a l o b l i g a t i o n f o r h a r v e s t i n g o r g a n s " a l s o f i n d s t h e h a r d e s t t h i n g t o do f o r the b r a i n dead p a t i e n t i s to send them t o the o p e r a t i n g room. By s e n d i n g t h e p a t i e n t t o t h e s u r g i c a l s u i t e t h e r e i s no c l o s u r e f o r her n u r s i n g c a r e w i t h t h a t p a t i e n t . P. When t h e y a c t u a l l y t a k e o f f f o r t h e OR I have t o and t h i s i s s o r t o f a...oh I d o n ' t know how I would put i t . . . s o r t of an e m p t i n e s s i n t h a t r e g a r d . P r o b a b l y b e c a u s e I'm n o t g o i n g t o f i n i s h t h e j o b i n t h e s e n s e t h a t I am n o t g o i n g to be w i t h the p a t i e n t u n t i l t h e y ' r e dead. You know f i n i s h t h e j o b . T h a t sounds t e r r i b l e d o e s n ' t i t ? But I mean I've done a l l I c o u l d do when I examine t h e n u r s i n g so and I'm n o t g o i n g t o ICU Nurses and the B r a i n Dead P a t i e n t 60 f i n i s h o f f . L i k e with a b r a i n dead p a t i e n t u s u a l l y you're going through the v a r i o u s steps and you're not going to take the organs. . They're j u s t going to be turned o f f and so there's v a r i o u s steps that you take with them i n mind. L i k e you go out and t a l k to the fam i l y and they've been spoken t o . They come i n and say t h e i r good-byes and you s o r t of t a l k to them and help them out. And e x p l a i n that the machine i s there i s between him and death. And s i t with the wife maybe and encourage them to hold h i s hand and so on. And then the machine i s turned o f f . Often what happens they go away sometimes f o r a h a l f an hour or so and you can s i t with them and wait and perhaps t a l k . And then you've gone through the whole process with them i n a sense i t ' s l i k e the g r i e v i n g process y o u r s e l f . You're doing a l l the steps with the f a m i l y . And then I f i n i s h o f f . I wash the body and I put i t i n a bag and I c a l l the p o r t e r and we go down to the morgue. So i n a sense I've gone the whole step yeah. Whereas I t h i n k when I've got them going to the OR I haven't r e a l l y . T h i s p a r t i c i p a n t , by c a r i n g f o r the p a t i e n t when the v e n t i l a t o r was d i s c o n t i n u e d and by c a r i n g f o r the body afterwards, i s able to achieve a sense of consonance. For others though the d i s c o n t i n u a t i o n of the v e n t i l a t o r i s i n c o n s i s t e n t with nursing c a r e . P. But there i s j u s t something that i s incongruent about being a nurse and t u r n i n g a v e n t i l a t o r o f f , I th i n k . R. And how do you f e e l at that time? P. Quite strange. I t almost... f e e l s a b i t un r e a l because i t i s so c o n t r a r y to what we do. The a c t i o n s of sending a dead p a t i e n t to the o p e r a t i n g room and d i s c o n t i n u i n g the v e n t i l a t o r though acknowledged by the p a r t i c i p a n t s as being abnormal a c t i v i t i e s f o r nurses are components of t h e i r r o l e s as i n t e n s i v e care u n i t nurses. T h i s r e s u l t s i n c o g n i t i o n s which are i n o p p o s i t i o n to behaviours. For others the f l u r r y of nursing a c t i v i t y ICU Nurses and the B r a i n Dead P a t i e n t 61 around the p a t i e n t ' s b e d s i d e i s i n c o n s i s t e n t w i t h the concept of d e a t h . P. And you're s a y i n g t h e y ' r e gone and you're r u n n i n g around l i k e mad t r y i n g to keep the b l o o d p r e s s u r e , and the u r i n e out you know t h e i r volume up, t h e y ' r e p e e i n g out and I have t r o u b l e r e l a t i n g the two. Or I t h i n k the f a m i l y has t r o u b l e r e l a t i n g the two. L i k e you're s a y i n g t h e y ' r e gone and then you're r u n n i n g around t r y i n g to keep the body g o i n g . Which you a r e . P. The o n l y t h i n g i s t h a t when l o o k i n g a f t e r an organ donor b r a i n dead p a t i e n t I t h i n k i t must be hard f o r the f a m i l y because you're r u n n i n g around... d o i n g a l l these t h i n g s t h a t you don't do to a b r a i n dead p a t i e n t t h a t ' s j u s t l a y i n g t h e r e and i s g o i n g to go d i e whenever. You know when i t ' s a donor... organ donor you're doing e x t r a s you're d o i n g echos, you're d o i n g b l o o d t e s t , you're doing t h i s and you're d o i n g t h a t . You know i f t h e i r e l e c t r o l y t e s , you're c h a s i n g the p o t a s s i u m or the sugars or t h e y ' r e i n DI and you're doing t h i s and doing t h a t you know so you j u s t have to keep making sure t h a t the f a m i l y understand t h a t t h a t a l o t of times you're r e a l l y busy t h e r e i s sometimes two nurses r u n n i n g around doing t h i n g s and a l l t h a t . So you j u s t have to t h i n k of the f a m i l y and you have to say to them t h a t you're d o i n g t h i s because you want to p r e s e r v e t h e i r organs so someone e l s e can use them but r e a l l y i f we weren't do i n g a n y t h i n g then the p a t i e n t p r o b a b l y would the p a t i e n t would d i e because we're keep i n g them a l i v e f o r a r e a s o n . F i n a l l y , d i s c o r d may r e s u l t when the nurse has the d e s i r e to do something but i s u n c e r t a i n of what to do due to l a c k of e x p e r i e n c e , i n f o r m a t i o n or s u p p o r t . T h i s i n t e r n a l d i s s o n a n c e i s e v i d e n t i n one p a r t i c i p a n t ' s d e s c r i p t i o n of a s i t u a t i o n i n v o l v i n g a young b r a i n dead mother whose two c h i l d r e n were p r e s e n t a t the b e d s i d e . P. But t h i s l i t t l e n i n e year o l d g i r l w i t h l o n g c u r l y b l a c k h a i r and huge brown eyes, eyes l a s h e s t h a t were an i n c h l o n g who went i n t o the room and threw h e r s e l f on the bed and s a i d : "Mommy wake up. I need you. I ICU Nurses and the B r a i n Dead P a t i e n t 62 love you." and then f l u n g h e r s e l f at me. Hugging me sa y i n g : "I don't understand why t h i s i s happening." And I sat down and she sat on my lap and hugged. I t was j u s t the most emotional experience I have ever encountered i n my nursing career and i t was h o r r i b l e . I d i d n ' t know what to do with t h i s g i r l . I thought that i t was a very d e l i c a t e s i t u a t i o n that I wanted to handle a p p r o p r i a t e l y f o r f e a r of r u i n i n g her f o r the r e s t of her l i f e . I t r i e d to phone any resources that I could and f e l t l i k e I wasn't g e t t i n g the support that I wanted. Ah [the c h a p l a i n ] had a c o l d which i s f i n e . And her replacement wasn't r e a l l y sure what we should be doing. I couldn't get any answers as to what the a p p r o p r i a t e , i f anyone had any suggestions on how to deal with a k i d because I had never d e a l t with a c h i l d b e f o r e . The D i r e c t o r of the u n i t was u n u s u a l ly i n s e n s i t i v e that day, which I found very annoying... And i t was very tough. Very tough. And i t ' s s t i l l on my mind . The disharmony t h i s p a r t i c i p a n t f e e l s a l s o c e n t e r s around her knowledge that her d e s i r e to do something may r e s u l t i n i r r e v e r s i b l e harm to the daughter. P. I was a f r a i d of was making comments that would put the k i d o f f completely from ever going to the h o s p i t a l or wanting to go to the doctor or hearing the e x p r e s s i o n : "Well dad i s n ' t f e e l i n g w e l l he i s going to the d o c t o r . " Or someone saying to her: "Well gee I have a headache" and then she i s going to t h i n k that that person i s going to be b r a i n dead. L i k e I think I-I took i t to that extent that I was a f r a i d that I was going to do some s o r t of of i r r e v e r s i b l e damage to her psyche by making the wrong comment...it was a d e l i c a t e s i t u a t i o n that had to be handled p r o p e r l y and I d i d n ' t f e e l l i k e I was capable of handling i t p r o p e r l y . Concept of b r a i n death. The p a r t i c i p a n t s i n d i c a t e a general acceptance of the concept of b r a i n death. However, from the t r a n s c r i p t s , i t i s c l e a r that at l e a s t two of the p a r t i c i p a n t s have d i f f i c u l t y a c c e p t i n g the d i a g n o s i s based only on c l i n i c a l s i g n s without a d d i t i o n a l p h y s i c a l proof. T h i s c r e a t e s a ICU Nurses and the B r a i n Dead P a t i e n t 63 d i s s o n a n t s i t u a t i o n where the nurs e ' s p e r s o n a l b e l i e f about the p a t i e n t opposes her knowledge t h a t the p a t i e n t has been d e c l a r e d dead. P. And j u s t because t h a t p a t i e n t has been d e c l a r e d b r a i n dead, t h e y ' r e s t i l l l y i n g on a bed and t h e y ' r e s t i l l b r e a t h i n g on a v e n t i l a t o r and s t u f f . I t doesn't mean t h a t he i s DEAD as f a r as I'm concerned or as f a r as the f a m i l y i s p r o b a b l y concerned. R. So p e r s o n a l l y how do you f e e l about the concept of b r a i n death? P. I t h i n k sometimes when you see the EEG and see a l l the f l a t l i n e s and s t u f f THAT i s more s i g n i f i c a n t then s e e i n g . . . then not s e e i n g a n y t h i n g and somebody t e l l i n g you he i s b r a i n dead. A l l the c a l o r i c s and a l l the d i f f e r e n t r e f l e x e s they check f o r . R. So you need something b e s i d e s the u s u a l c r i t e r i a of b r a i n death? You need some s o r t of pro o f t h a t they are b r a i n dead then? P. I t h i n k i t makes i t e a s i e r to d e a l w i t h the p a t i e n t t h a t way. I f t h e r e i s some c o n c r e t e drawings or whatever. P. But I always l i k e to read i f they had a CT Scan, what the scan show and why...what shows t h a t the person i s b r a i n dead...The ones t h a t you know w e l l geez I guess t h e y ' r e SURE but I guess t h e r e ' s always t h a t doubt t h a t you know I guess l i k e the f a m i l y too you know they always can t h i n k w e l l you know I hope t h e y ' r e sure or you know t h a t you know but I mean w i t h us sometimes you can j u s t see t h a t p h y s i c a l t h a t t h e y ' r e not bad but they cone [ h e r n i a t e ] r i g h t t h e r e w e l l then you know f o r s u r e . But sometimes you don't have these p h y s i c a l s i g n s . They j u s t l o o k so p e a c e f u l and t h e y ' r e j u s t l y i n g t h e r e and you t h i n k : "God how can they be b r a i n dead when they l o o k so good or whatever..." I t ' s hard on me to t h i n k w e l l you know I guess they are b r a i n dead b u t . . . The d i s s o n a n c e t h i s p a r t i c i p a n t d e s c r i b e s may i n p a r t be due to the v i s u a l s t i m u l i r e g a r d i n g the p a t i e n t ' s ICU Nurses and the B r a i n Dead P a t i e n t 64 c l i n i c a l appearance c l a s h i n g with the nurses' b e l i e f s about the appearance of death. The f o l l o w i n g accounts of s i x p a r t i c i p a n t s i l l u s t r a t e t h i s p o i n t . P. When you see the heart beat and the chest r i s e and f a l l and the r e s p i r a t i o n r a t e with the r e s p i r a t o r , blood pressure and s t u f f then I s o r t of f e e l that there i s something t h e r e . P. I t ' s harder because you are t r y i n g to convince the fa m i l y that they are b r a i n dead and you are l o o k i n g at them and you're l o o k i n g a f t e r them and sometimes i t i s hard to remember that the p a t i e n t can look t o t a l l y normal and be b r a i n dead and you are t a l k i n g to them while you are doing the blood work because we u s u a l l y t a l k to our p a t i e n t s anyways and sometimes you w i l l c a tch y o u r s e l f and you w i l l have to keep t e l l i n g y o u r s e l f that you know reminding y o u r s e l f that t h i s person i s b r a i n dead. I thin k i t i s harder when they look normal. When they're not a l l bashed up. P. I guess my f i r s t f e e l i n g I guess i s that you r e a l l y wonder w e l l I wonder i f he r e a l l y i s b r a i n dead l i k e I mean because you know and I'm sure t h a t ' s what the f a m i l i e s go through. You look at them and a l o t of them don't look l i k e they even you know they're not l i k e you know l i k e with blood a l l over or i n c i s i o n s a l l over you know unless they've been l i k e a l l the other organs are bad or whatever. A l o t of them they don't seem that bad you know. L i k e i f they're a subarachnoid bleed or whatever they're p e r f e c t l y healthy otherwise except f o r t h e i r b r a i n . P. And she looked so p e r f e c t , the mom, you know. I mean she looked so p e r f e c t as they u s u a l l y do you know. And her h a i r was n i c e and combed and and she looked l i k e she was asleep with-a tube i n her mouth. P. I guess one minute they're a l i v e and the next they're dead. But a l s o they don't necessary look dead. ICU Nurses.and the B r a i n Dead P a t i e n t 65 You know some of them do not have a mark on them. We have a l l these tubes i n them. For some the combination of a normal appearance and youth seems i n c o n s i s t e n t with death. P. Yeah i t ' s not f u n c t i o n i n g we're doing a l l the work fo r i t . But sometimes l i k e the l a s t one I had i t was r e a l l y d i f f i c u l t because he was only s i x t e e n and i t j u s t reminded me because I have a son of my own and i t was a young man and that made i t r e a l l y d i f f i c u l t and i t was l i k e he was s t i l l a l i v e . R. The p a t i e n t was s t i l l a l i v e ? P. Yeah the p a t i e n t was s t i l l a l i v e ( v o i c e very s o f t ) and i t was j u s t ah because there was nothing that wasn't i n t a c t l i k e h i s s k i n was s t i l l on. He s t i l l looked l i k e a human being and i t was j u s t r e a l l y scary to see t h a t . A body there being maintained j u s t so i t can be r e t r i e v e d . . . f o r donation and s t u f f l i k e . P. And seeing t h i s young face l y i n g on t h i s bed and they g e n e r a l l y look p e r f e c t l y f i n e except that they have t h i s i r r e p a r a b l e head i n j u r y and they don't have any limbs broken or anything. I t ' s hard t o . t h i n k that t h i s person i s a c t u a l l y b r a i n dead, at f i r s t . And I f i n d i t e a s i e r now j u s t because of the experience that I have had with i t . One p a r t i c i p a n t a l s o s t a t e s there i s a need to see the p a t i e n t as dead. P. I thin k i n anybody when you're d e a l i n g with death i t i s so much e a s i e r a c t u a l l y to see the person DEAD. See them with no l i f e i n them before you can accept t h a t . I t h i n k i n any s i t u a t i o n i f you hear about somebody that died i t i s hard to accept that unless you a c t u a l l y see them. T h i s same p a r t i c i p a n t i n d i c a t e s b r a i n death i s not an easy concept even f o r nurses to grasp. P. I think sometimes even f o r nurses i t ' s hard to understand the concept of b r a i n death and i t ' s sometimes i t ' s hard to understand that t h i s i s a b r a i n ICU Nurses and the B r a i n Dead P a t i e n t 66 dead p a t i e n t even f o r new nurses when they [the b r a i n dead p a t i e n t ] cone and they see t h i s p a t i e n t attached to a v e n t i l a t o r . I t ' s hard ,to understand that they are not j u s t i n a coma and that they are dead. For some p a r t i c i p a n t s there i s i n c o n s i s t e n c y when the d i a g n o s i s i s made because nothing has changed. The p a t i e n t appears to be as he was before the d i a g n o s i s was made but d e s p i t e t h i s he i s now considered dead. The only obvious d i f f e r e n c e i s the equipment i s now gone. P. Yeah, I thin k that i t ' s something that a l l of the sudden you've made t h i s d e c i s i o n and you have been c a r i n g f o r t h i s person who i s b r a i n dead and then you shut e v e r y t h i n g o f f and i t ' s s t i l l the same person and they're s t i l l b r a i n dead but there i s j u s t nothing going. There i s no equipment going so t h e r e f o r e they're dead. L i k e when there i s equipment going and you see the heart beat and the blood pressure and you s t i l l t hink they're a l i v e even though they're b r a i n dead and s h u t t i n g them o f f i s j u s t s o r t of l i k e the f i n a l : "That's i t , nothing more" but i t ' s f r u s t r a t i n g because there i s no r e a l l i n e t here! Even though you saw the heart beat and the blood pressure and s t u f f the person i s s t i l l not there. I t ' s s t i l l b r a i n dead but i t ' s more...it's r e a l i t y when you shut e v e r y t h i n g o f f . You don't see anything on the monitors. They don't breathe. Then you, then I r e a l i z e that that person i s dead. When you see the heart beat and the chest r i s e and f a l l and the r e s p i r a t o r r a t e with the r e s p i r a t o r , blood pressure and s t u f f then I s o r t of f e e l that there i s something there. Three p a r t i c i p a n t s i n d i c a t e that dissonance occurs i f at the time of d e c l a r i n g the p a t i e n t b r a i n dead treatment does not cease. P. There i s some f r u s t r a t i o n sometime and you've s o r t of f a i l and yet you're s t i l l c o n t i n u i n g on. You've r e a l l y f a i l e d to save t h e i r l i v e s and yet you're s t i l l c o n t i n u i n g on to care f o r them. You know i t ' s l i k e hopeless s i t u a t i o n . . . i t ' s hard to e x p l a i n . ICU Nurses and the B r a i n Dead P a t i e n t 67 P. Ah I f i n d i t r e a l l y hard. I f i n d up u n t i l the po i n t when we're c l a s s i f i e d as b r a i n dead i s one th i n g but there i s something that t r i g g e r s o f f i n my mind the minute they're not going to be donor. I t ' s l i k e I'm done with that p a t i e n t . L i k e I've done a l l I can do and now they're gone...I know there are a l o t of things e t h i c a l l y that are very d i f f i c u l t i n ICU and I guess I j u s t think t h e i r l i f e i s over. They should be taken o f f immediately. When they're considered b r a i n dead they're dead. Take them o f f and l e t them be. T h e i r l i f e i s f i n i s h e d you know. And tha t ' s hard i f they're not. I don't know how e l s e to d e s c r i b e i t you know...Ideally i n my mind once a p a t i e n t i s considered b r a i n dead they should be taken o f f the v e n t i l a t o r i f they are not going to be an organ donor and t h a t ' s i t . The f a m i l y should be t o l d that they are dead and we're going to take them o f f the v e n t i l a t o r and t h a t ' s i t and they're taken away. But sometimes i t doesn't always happen. So I guess f o r me I j u s t s o r t of t r y and flow with i t . And I'm not going to be able to do anything about i t and maybe there i s a part of me that kind of shuts o f f and I w i l l do what I have to to take care of that p a t i e n t u n t i l they go. But I guess my heart and sou l i s n ' t i n t o i t . P. I f the person i s gone and b r a i n dead and we're going f o r organ donation then I w i l l go a l l out but i f they're b r a i n dead and we are j u s t hanging around, passing time then f o r g e t i t . J u s t stop i t . I see no point i n i t . Yet f o r another nurse when she made an " i n s t a n t bond" with the parents of a seventeen year o l d b r a i n dead p a t i e n t the d i s c o n t i n u a t i o n of the v e n t i l a t o r happened too q u i c k l y a f t e r the d i a g n o s i s was made. Her personal dissonance r e l a t e s to the f a c t that she r e i n f o r c e d to the f a m i l y the d i a g n o s i s of b r a i n death which she p e r s o n a l l y did not accept. P. Maybe because you know our f a m i l y being the same age I s o r t of i d e n t i f i e d with that I thought I couldn't wouldn't want to make that d e c i s i o n that f a s t . L i k e that would have been something I would have r e g r e t t e d ICU Nurses and the B r a i n Dead P a t i e n t 68 f u r t h e r on a couple of months down the road. I mean you know that a l l took place w i t h i n twelve hours or we l l from the time of admission i t was more than twelve i t was p r e t t y w e l l twenty-four from the time of admission. And you know maybe he would have opened up you know or maybe we should've had another neurosurgeon come i n and t a l k to us or something and I guess i t was the a c t i v e part that I took i n r e i n f o r c i n g you know the medical d e c i s i o n . . . the d e c i s i o n came a l i t t l e b i t too f a s t f o r ME p e r s o n a l l y and yet I was having to r e i n f o r c e i t to the f a m i l y because i t seemed, that seemed to be the l o g i c a l t h i n g to do. I mean t h i s p a t i e n t was b r a i n dead why drag them through another two days of i t ? . . . i t was too soon f o r me l i k e i f you had asked me that tomorrow l i k e the next day ah then I'd say "Yes...he i s b r a i n dead and there i s r e a l l y nothing you know nothing more anybody can do with him so you know l i k e he j u s t l i k e he has to d i e . T h i s i s hi s time to die and b a s i c a l l y he has already d i e d . " But i t was a l i t t l e b i t too f a s t f o r me and yet I was having to r e i n f o r c e the medical d e c i s i o n s that were alre a d y made which I would have agreed with I am sure i n another day because I-I don't have a problem with the d i a g n o s i s f o r b r a i n dead but and the f a c t . . . h i s age i n t h i s case being a seventeen and a very a c t i v e an 'A' student and a l l t h i s b u s i n e s s . I t was a d i f f i c u l t one and as I say I maybe I shouldn't have r e i n f o r c e d i t so s t r o n g l y and maybe I should have s a i d : "Well why don't you wait another day I mean i f you don't f e e l that sure about i t why don't you wait another day and or maybe would you l i k e someone e l s e to to confirm what doctor so and so s a i d ? " When the d i a g n o s i s of b r a i n death i s made the d e s i r e to do something may be i n o p p o s i t i o n with the knowledge that nothing can be done. P. I think the f i r s t time that I looked, a f t e r that b r a i n dead young boy I j u s t couldn't help t h i n k i n g that there must be SOMETHING that we can do here because he was so young there's something but r e a l l y knowing there r e a l l y wasn't. Though many of the p a r t i c i p a n t s i n d i c a t e that f o r them b r a i n death means the p a t i e n t i s dead, a number of nurses gave the p a t i e n t a t t r i b u t e s of the l i v i n g . The p a r t i c i p a n t s ICU Nurses and the Brain Dead Patient 69 also made reference to these inconsistencies in their b e l i e f s . R. What does brain death mean to you? P. It would mean to me maybe cessation of voluntary function and ba s i c a l l y your body i s just working on reflex action meaning cardiac and hormone b a s i c a l l y I guess and that a l l other sensation and function has terminated. Despite this participant's b e l i e f that sensory function ceases with brain death she also holds an opposing b e l i e f that a brain dead person might f e e l pain. P. One good concern that I always have was i f they use an anesthetic or not? [in reference to organ r e t r i e v a l ] And I spoke to one of the anesthetist once and he told me that usually they don't but they do use pancuronium because of frequently the muscles wouldn't relax and that sort of for while there i t sort of bothered me that they didn't use any form of anesthetic just in case they had some sort of sensation that they could f e e l this i n c i s i o n . But I think in time i t ' s sort of dealing with the r e a l i t y as to exactly what brain death means that I have sort of come to grips with that . Although i f i t was one of my family members I might ask them i f they would just use a l i t t l e nitrous oxide or something just in case. I-I don't know i t ' s kind of you have these sort of s i l l y thoughts in your mind that ah well maybe they're not s i l l y because i t ' s something that's on your mind. In addition, several of the participants indicate that they believe the patient i s dead but they also provide and want to provide nursing care which w i l l make the patient comfortable. R. Can you t e l l me what brain death or brain dead means to you? P. Ok well going by the testings that we do...like the ice water i r r i g a t i o n s and the f l a t EEGs and the apneic test to me...they are not able to support l i f e without the respirator primarily...I want to do things for them ICU Nurses and the B r a i n Dead P a t i e n t 70 that I p e r c e i v e w i l l be comforting f o r them even though I'm aware that they are not able to f e e l i t but and anything that causes them pain I wouldn't do. P. Well to me b r a i n dead i s the person the b r a i n i s DEAD. They might have the heart going or they might...well u s u a l l y they are on a v e n t i l a t o r and t h i s but to me l i k e the s o u l or the b r a i n i s GONE and that person the way the person was when a l i v e w i l l never be the same. L i k e the person i s gone. I t ' s j u s t that mechanical things are s t i l l f u n c t i o n i n g but l i k e the b r a i n that c o n t r o l s e v e r y t h i n g i s not...but I j u s t t h i n k w e l l I made that person's l a s t few hours i n t h i s world more comfortable or whatever and i f they can be i f there was any chance that you know b r a i n dead people s t i l l c ould see or they could f e e l or they could whatever then they know that i t wasn't a traumatic ending... P a r t i c i p a n t s a l s o i n d i c a t e that though they accept the concept of b r a i n death i t was not c o n s i s t e n t with t h e i r concept of death. P. I f the person i s a c t u a l l y dead then t h a t ' s . . . w e l l now I'm g e t t i n g here two t h i n g s . Cause I b e l i e v e the person i s a c t u a l l y gone, dead. But the body i s s t i l l a l i v e ! . . . J u s t you know i f they took away the v e n t i l a t o r and that the person would not breathe. They are v i r t u a l l y dead because d i f f e r e n t p arts of the body can l a s t d i f f e r e n t lengths of time...Not anything that took a long time to work through but i t [the b r a i n dead p a t i e n t ] was something that I had never seen b e f o r e . You read and then when you see. I t ' s j u s t d i f f e r e n t you know because the person the body i s a l i v e but there's nothing l e f t u p s t a i r s and i t j u s t takes a l i t t l e b i t of adjustment... P. I see them as two d i f f e r e n t deaths. B r a i n death meaning no longer v i a b l e . That he i s no longer v i a b l e but death i s the time the br e a t h i n g stops and the heart stops. That i s the a c t u a l DEATH. I mean I don't know as I say I have never thought of the concept of being dead and being DEAD. B r a i n dead and p h y s i c a l l y dead...Brain death i s the death of an organ that i s the organ that keeps you a l i v e . So that i s to me b r a i n ICU Nurses and the B r a i n Dead P a t i e n t 71 DEATH. So when you you can't l i v e i f you're b r a i n dead o b v i o u s l y . You can't... e s s e n t i a l l y mindless. Ok t h a t ' s the s o u l but death i t s e l f i s when the machine i s turned o f f and the heart stops...When there's a complete body death. Organ r e t r i e v a l and t r a n s p l a n t a t i o n . When p r o v i d i n g care to the b r a i n dead p a t i e n t the i n t e n s i v e care u n i t nurse must face the p o s s i b i l i t y that her care w i l l r e s u l t i n organs being harvested from her p a t i e n t to b e n e f i t another. The nurse, whether or not she supports the concept of t r a n s p l a n t a t i o n , may experience pe r s o n a l dissonance f o r a v a r i e t y of reasons. These reasons w i l l become apparent with the f o l l o w i n g i n t e r p r e t a t i o n of the p a r t i c i p a n t ' s accounts. I n t e n s i v e care u n i t nurses are o f t e n i n v o l v e d i n a s t r u g g l e to save the l i f e of a s e v e r e l y b r a i n i n j u r e d p a t i e n t . T h i s s t r u g g l e c l o s e l y l i n k s the nurse to the p a t i e n t . When e f f o r t s to save the p a t i e n t ' s l i f e f a i l and the p a t i e n t becomes b r a i n dead i t i s then d i f f i c u l t f o r the nurse to focus on saving the p a t i e n t ' s organs f o r an u n i d e n t i f i e d t h i r d p a r t y . The d i s c o r d between the i n i t i a l focus of saving the l i f e of a known i n d i v i d u a l and the l a t e r emphasis of saving the l i f e of an unknown person i s evident i n the f o l l o w i n g three accounts. P. We're doing i t f o r a team of doctors somewhere and you're doing i t f o r a p a t i e n t who i s w a i t i n g f o r something and you don't know that person. So you're s o r t of I guess I can't be c l i n i c a l enough to say "Well gee I'm doing a good job here because I'm g e t t i n g Joe h i s heart and I'm getting- so and so h i s kidneys." ICU Nurses and the B r a i n Dead P a t i e n t 72 Because that i s not what my focus has been I'm not a nurse to procure organs f o r other people. R. So can you j u s t i f y to y o u r s e l f your reason f o r being there? P. Um I'm doing my job. R. That's what i t comes down, to? P. Well I don't get a great sense of s a t i s f a c t i o n over saving these organs. I don't. And I'm sure t h a t ' s why there are people who work on the other si d e of the fence that get a great s a t i s f a c t i o n by t a k i n g those organs. I can't get e x c i t e d about i t because t h a t ' s not why I was l o o k i n g a f t e r that p a t i e n t i n the beginning. I mean you can't! I don't think you can look a f t e r someone and t r y and keep them a l i v e . They go through and they become b r a i n dead. I don't t h i n k you can get e x c i t e d about t a k i n g t h e i r organs then. P. Ok so as I was saying w i t h i n t h i s one hour peri o d you have a p a t i e n t that you are going one hundred percent b a s i c a l l y to keep a l i v e not f o r even the idea f o r donation i n your mind. And they become very u n s t a b l e . L e t ' s say they show signs of coning [ h e r n i a t i n g ] or something and they decide: "Ok t h i s guy's going to cone but he i s a candidate f o r donation." And you almost s t a r t you gear your whole care i n s t e a d of t r y i n g to keep t h i s p a t i e n t a l i v e f o r the p a t i e n t and the f a m i l y , you're t r y i n g to keep t h i s p a t i e n t a l i v e so that they are a s u i t a b l e donor. And i t ' s i t ' s l i k e ah a l i t t l e e m o t i o n a l l y t r y i n g because you're i n t e n s e l y l o o k i n g a f t e r t h i s man...let's say as an example and then the whole focus gets onto t h e i r kidneys, or t h e i r heart and lung. And i t ' s l i k e the whole person, the p e r s p e c t i v e of the whole person i s taken away and then you are ORGAN NURSING to a c e r t a i n extent i f that makes any sense. And t h a t ' s sometimes a l i t t l e hard to deal with. Now g e n e r a l l y i t ' s over a longer p e r i o d of time l e t ' s say or i t ' s an expected t h i n g . We're g e t t i n g a trauma from up north and they are b r a i n dead or t h i s person i s coming i n and they are b r a i n dead um or s u i c i d e . You know g e n e r a l l y there i s a l i t t l e more warning. But there has been times where i t hasn't even been a c o n s i d e r a t i o n because they are a trauma that i s l o o k i n g l i k e they are going to do ok and then f o r some reason or another they don't. And t h a t ' s ICU Nurses and the B r a i n Dead P a t i e n t 73 a l i t t l e b i t d i f f i c u l t g e t t i n g i n t o that because you have to s o r t of completely switch your gears. P. We see the person come through the door. We see the f a m i l y . You get s o r t of knowing about the h i s t o r y of the person, r i g h t ? That's a l l we see. And then we see the p a t i e n t go to the OR, r i g h t ? So we are t i e d up I guess i n the f e e l i n g s of the f a m i l y ' s g r i e f cause I'm sure that washes over us you know. I mean no matter what we say or what we do I'm sure that a f f e c t s us you know. We l e a r n to throw i t o f f but I'm sure that a f f e c t s us the way we look at t h i n g s . But the PORT people they must get to see that Mrs Jones got t h i s kidney:. "Look how w e l l she i s doing now." So that must be t h e i r b e n e f i t because they [PORT] can't get i t coming i n here, you know. They a l s o don't know anything about what's gone on befo r e . They come i n . They pick up t h i s p a t i e n t and away they go. Some p a r t i c i p a n t s support the end r e s u l t of t r a n s p l a n t a t i o n but due to the d i f f i c u l t i e s they have encountered i n c a r i n g f o r the b r a i n dead p a t i e n t and h i s fa m i l y are unsure i f they themselves could be donors. T h e r e f o r e , t h e i r b e l i e f i n t r a n s p l a n t a t i o n and t h e i r a c t i o n of c a r i n g f o r an organ donor i s i n c o n s i s t e n t with t h e i r b e l i e f that they themselves could not be organ donors. P. I t has made me think more about organ donation. When I f i r s t came here I was very gung-ho about being an organ donor. I think I have seen so many d i f f e r e n t s i t u a t i o n s that at times t h i s i s f o r myself that I have thought "Boy I don't r e a l l y know i f I want to go through with t h i s . I don't r e a l l y know i f I want to put my f a m i l y through t h i s . " There seems to be so many l i t t l e c o m p l i c a t i o n s that sometimes I've thought "Do I r e a l l y want to f i l l out t h i s card to be an organ donor?" I know i t ' s very s e l f i s h of me to thin k that but I guess I have j u s t seen s i t u a t i o n s of the fa m i l y has to through so much and i t seems to be so tedious sometimes that you sometimes wonder i f i t ' s worth i t . I mean I know i t ' s worth i t i n the long run i f i t ' s going to help someone e l s e but I have had those ICU Nurses and the B r a i n Dead P a t i e n t 74 thoughts the more that I have worked with some of these donor p a t i e n t . I have. Another p a r t i c i p a n t i n d i c a t e s support f o r t r a n s p l a n t a t i o n but questions whether the end j u s t i f i e s the means. P. Anyway i t ' s almost f e e l s a l i t t l e d i s r e s p e c t f u l t r e a t i n g a b r a i n dead p a t i e n t f o r organ donation. ALTHOUGH I am f o r the end r e s u l t . I agree with that and f e e l ok about you know doing i t but i s almost seems a l i t t l e d i s r e s p e c t f u l to j u s t be t r e a t i n g t h i s body i n terms of numbers. R. I'm j u s t wondering what you meant by a l i t t l e d i s r e s p e c t f u l . P. I guess i t ' s the l i k e I'm f e e l i n g that t h i s i s j u s t a c o n t a i n e r that I am l o o k i n g a f t e r now and [pause] I don't know there i s j u s t a b i t of c o n f l i c t there now. And yet to j u s t be l i k e i t wouldn't bother me a b i t l i k e I say to comb t h e i r h a i r even though I know they're going to go i n a h a l f an hour to be an organ donor. L i k e I would s t i l l want to do those things and to not I don't know how to. R. Is i t the thought that you're c a r i n g f o r t h i s b r a i n dead p a t i e n t f o r somebody e l s e and not f o r the p a t i e n t ? Is that what's d i s r e s p e c t f u l or P. I guess i t ' s l i k e using somebody l i k e I'm going to use t h i s person. Or t h i s c o n t a i n e r I'm going to use i t and maybe I quest i o n do I have a r i g h t to use i t . You know have I got a r i g h t to use l i k e I don't use people when they're l i v i n g . And even though t h i s i s j u s t a co n t a i n e r l i k e j u s t a body there i s s t i l l something there that bothers me a l i t t l e about using i t . . . Y e a h i t ' s j u s t l i k e using j u s t using somebody. Although i t i s f o r a good means that they are being used. Yeah I don't know how e l s e to put that one. For another p a r t i c i p a n t the d e s i r e to b e n e f i t the t r a n s p l a n t r e c i p i e n t i s at odds with the manner i n which the b e n e f i t has to be d e r i v e d . That i s , the removal or organs from the b r a i n dead p a t i e n t . ICU Nurses and the B r a i n Dead P a t i e n t 75 P. Oh the hardest t h i n g I think r e a l l y and t r u l y i s sending to the OR the donor. I think that i s the hardest t h i n g I do. Because w e l l how do you d e s c r i b e that? What can you say about t h a t ? . . . I t ' s s o r t of l i k e I j u s t s o r t of f e e l l i k e saying to the p a t i e n t " L i k e I'm r e a l l y s o r r y we have to take your organs but we don't want to put them i n t o the ground do we? And so t h e y ' l l toot you o f f to the OR and put them out you know." You see what I'm t r y i n g to say? A s i m i l a r d i s c o r d i s apparent i n the f o l l o w i n g e x c e r p t . P. I don't know where i t comes from but I tend to f i n d that a l i t t l e b i t on the squeamish s i d e , to think that they are going to take them [organs] out and to put them i n t o someone. I don't know where that b i t of squeamish comes from...and I thin k i t ' s I mean I think i t ' s a very necessary t h i n g and i t ' s brought a l o t of b e n e f i t to some people. I t ' s j u s t very t r a g i c that we have to that i t happened with a death of u s u a l l y a young healthy person. The t r a n s c r i p t s a l s o i n d i c a t e that donor care i s p h y s i c a l l y demanding and time consuming. The care and the amount of time r e q u i r e d to maintain f a i l i n g organs i s i n c o n f l i c t with the p a r t i c i p a n t ' s d e s i r e to be su p p o r t i v e to the b r a i n dead p a t i e n t ' s f a m i l y . P. L i k e he was going to be going up to surgery you know up to the OR and she [ p a t i e n t ' s wife] was q u i t e composed but she s a i d "I don't want to l e a v e . I know when I leave he i s going to go. L i k e you w i l l take him away and I j u s t don't want to l e a v e . I know there i s nothing that I can do or that you can do but i t ' s j u s t I can't l e a v e . " . . . I f e l t comfortable enough with the f a c t that he was b r a i n dead but at the same time j u s t dancing i n the back knowing that I got to get doing a l l t h i s work you know. L i k e which was s o r t of stomach t u r n i n g because you want to spend more time with her at t h i s p o i n t and yet you know you've got to s t a r t moving f a s t . P. I t gets very f r u s t r a t i n g at times when you are lo o k i n g a f t e r a p a t i e n t t h a t ' s b r a i n dead and they become very unstable or they go i n t o f u l l DI or ICU Nurses and the B r a i n Dead P a t i e n t 76 something and you're very very busy at that p a r t i c u l a r time where you're chasing the u r i n e and you're hanging IVs l e f t , r i g h t and c e n t e r . Perhaps they need a l o t of blood work based on t h e i r whatever and you don't f e e l that you have the time to spend with the f a m i l y . That r e a l l y bothers me a l o t and because I f e e l that they're at such l o s s that they need that support now more than at anytime at a l l . And with our c u r r e n t n u r s i n g problem as i t i s I sometimes f e e l that I'm not able to provide that support f o r them that I wish I could have...But I f e e l that I thin k i t ' s very unfortunate i f they're not allowed that time to g r i e v e with you or i f they have questions that they j u s t s o r t of thin k of a l l of a sudden and they want to d i s c u s s that with you to make them f e e l b e t t e r . . . That you f e e l that you're h u s t l e b u s t l e at the bedside so much that maybe what they [ f a m i l y ] need i s j u s t an arm around them and s i t t i n g down with a box of Kleenex and l e t t i n g them j u s t have a great cry but a l o t of time you don't have that time and that was f r u s t r a t i n g f o r me at times. T h i s nurse a l s o i n d i c a t e s that the presence of the fa m i l y can make care of the b r a i n dead donor d i f f i c u l t . P. I think when they stay and want to be at the bedside I f i n d i t i s a l i t t l e b i t more d i f f i c u l t because you can't I f i n d you can't be q u i t e as e f f i c i e n t i n my p r e p a r a t i o n f o r the OR. And with f a m i l y members there i t i s excuse me, excuse me and you're walking around the beside and you're t r y i n g to send specimens o f f and doing the preop check l i s t and sometimes they're ready to go to the OR r i g h t now or i t ' s been delayed. I f i n d i t i s a l i t t l e e a s i e r when they're not at the bedside too. The f o l l o w i n g t r a n s c r i p t provides evidence of the c o n f l i c t that e x i s t s f o r one p a r t i c i p a n t when she has designated the t r a n s p l a n t r e c i p i e n t as the reason f o r her nursing care of the b r a i n dead p a t i e n t but the f a m i l y members are s t i l l present. P. We don't encourage them [the f a m i l y ] to stay u n t i l they [the b r a i n dead p a t i e n t ] r o l l i n t o the OR or whatever...I don't mind i f they stay f o r awhile but I mean ten or twelve hours yeah i t i s probably b e t t e r because my focus has changed at that point and I l i k e ICU Nurses and the B r a i n Dead P a t i e n t 77 to be s e n s i t i v e to t h e i r needs but I am doing t h i n g s at that p o i n t f o r somebody e l s e [the t r a n s p l a n t r e c i p i e n t ] I am not r e a l l y doing i f f o r t h e i r f a m i l y member at that p o i n t . I am not do ing i t f o r them. J u s t f o r somebody e l s e . Though the p a r t i c i p a n t s p r o v i d e the care f o r b r a i n dead donors , i t i s e v i d e n t that these a c t i o n s oppose the b e l i e f s a number of the p a r t i c i p a n t s h o l d r e g a r d i n g t r a n s p l a n t a t i o n programs. For i n s t a n c e , one p a r t i c i p a n t q u e s t i o n s the aim of t r a n s p l a n t programs. P . I t h i n k d o n a t i o n programs are a l l f i n e and dandy. I t h i n k we have a l o t of i r o n i n g out to d o . . . I t h i n k they are t r y i n g to meet t h e i r numbers so that they can meet t h e i r budget and get the same budget next year which I'm not sure that I agree wi th but R. By t r y i n g to meet t h e i r number do you t h i n k there i s too much going on? P . Oh yeah. I t ' s a l l crap r i g h t now to be honest w i th y o u . . . I t h i n k i t ' s you know "Wel l t h i s almost f i t s h e r e , l e t ' s put i t i n t h i s ches t you know and we w i l l j u s t s t u f f i t i n h e r e . " And our f i r s t donor that we looked a f t e r who was here f o r four months and gee funny enough she went i n t o the DTs p o s t o p . W e l l you know I t h i n k those k i n d of s c r e e n i n g procedures should be done and she was d i s c h a r g e d once from the h o s p i t a l and went home and smoked four packs of smokes and came back dn because she R. Donor you s a i d ? P . R e c i p i e n t . We c a l l them our f i r s t donor l i k e meaning she was a r e c i p i e n t of a donor . Ok? And that whole scene I t h i n k put a l o t of us o f f the whole h e a r t lung program. R. So she was back a f t e r P6. Oh yeah and she ended up d y i n g . She was noncompl iant and she d i d n ' t want to l i v e any more. So they l e t her d i e . ICU Nurses and the B r a i n Dead P a t i e n t 78 Another p a r t i c i p a n t f e e l s that there i s a need f o r "a l i t t l e b i t more humanity to come i n t o the donor system." P. And I think we are sometimes c r o s s i n g l i n e s that we shouldn't cross and I think the technology i s marching ahead of the e t h i c s and I think that sometimes we have to slow down the technology to deal with the e t h i c s a b i t . Cause sometimes you can go too f a s t too f a r . And l e t the r e s t of them, catch up because the p u b l i c doesn't understand the i s s u e s . Cause the p u b l i c r e a l l y doesn't understand the i s s u e s . They j u s t go: " I s n ' t i t wonderful. Look we've saved another c h i l d . " R. So by b r i n g i n g more humanity i n t o the t r a n s p l a n t a t i o n you mean l o o k i n g more at the e t h i c s of i t ? P. Looking more at the e t h i c s and l o o k i n g more at the r a m i f i c a t i o n s of you put a l i v e r i n t o one c h i l d but they may put four l i v e r s i n t o one c h i l d . Is that r i g h t ? Phenomenal phenomenal c o s t s . Emotional c o s t s on the f a m i l y . And then the u l t i m a t e argument i s should you be p u t t i n g four times the cost of that surgery i n t o one c h i l d versus spreading i t out more? I don't know. One p a r t i c i p a n t a l s o r a i s e s the i s s u e f o r the p o t e n t i a l of dissonance to e x i s t i f the i n t e n s i v e care u n i t a l s o r e c e i v e s r e c i p i e n t s . P. I t ' s probably j u s t as w e l l that we don't get to see the r e c i p i e n t because we u s u a l l y we're a d i f f e r e n t u n i t but I mean there w i l l come a time when we w i l l see them because the l i v e r s w i l l come back to us and so we w i l l see the p a t i e n t that you're working so hard to save and then i s b r a i n dead and i s sent to the OR. And you w i l l see the new p a t i e n t come back and q u i t e o f t e n they're so s i c k you w i l l see the p a t i e n t w a i t i n g f o r the l i v e r as w e l l so t h a t ' s a chance you w i l l have to take. R. In what way? P. Well you w i l l know who got the l i v e r I mean you w i l l know the p a t i e n t that went to the OR and was b r a i n dead and donated and you w i l l a l s o know the p a t i e n t that r e c e i v e d the l i v e r . ICU Nurses and the B r a i n Dead P a t i e n t 79 R. W i l l that a f f e c t how you f e e l about e i t h e r of the p a t i e n t s ? P. No I don't think so. I j u s t f i n d i t w i l l be a b i t of a s e n s i t i v e area. P r o f e s s i o n a l r e s p o n s i b i l i t y and personal needs. The accounts of a number of the p a r t i c i p a n t s i n d i c a t e that t h e i r p r o f e s s i o n a l r e s p o n s i b i l i t y to be su p p o r t i v e to the f a m i l y i s o f t e n i n o p p o s i t i o n to the nurses meeting t h e i r own emotional needs. P. I deal with i t much b e t t e r now then I use to because I think that I have d e a l t with i t so o f t e n that I'm a c t u a l l y f i n e u n t i l they [the f a m i l y ] hug me. When they hug me I hug them back and then I have to kind of b i t e the i n s i d e of my mouth or something because I can f e e l my l i p s s o r t of q u i v e r i n g . I f they're i n t e a r s I l i k e to bawl my eyes out with them but I f e e l t h a t ' s not my r o l e at that p a r t i c u l a r time. I have to be the strong person f o r them and I can have my time l a t t e r when I change out of my uniform or whatever. I f I'm able to be there f o r them t h a t ' s great. Sometimes i t ' s a heavy hearted d r i v e home and I t r y to shake that o f f by the time I open the f r o n t door and some days are b e t t e r than o t h e r s . One p a r t i c i p a n t d e s c r i b e s the d i f f e r e n c e f o r her when the f a m i l y i s present and when they are not. In the l a t t e r she i s able to meet her own needs. P. You do f e e l r e a l l y sad and sometimes you cry with the f a m i l y and a l l t h i s but you know I guess because we're t r y i n g to make the f a m i l y f e e l b e t t e r that you don't. You don't want to l i k e s t a r t c r y i n g your eyes out and be worse than the fa m i l y type of thing...but I remember once...I j u s t sat there and held h i s hand. He did n ' t have a f a m i l y , he was dying and I j u s t . . . I don't know there was no f a m i l y so I was there I alone i n the room and I j u s t held h i s hand and I had t e a r s i n my eyes and I c r i e d a b i t and I guess your emotions come forward then and i t could be b u i l d up from other things as w e l l and you know but then that was t h a t . ICU Nurses and the B r a i n Dead P a t i e n t 80 One nurse d e s c r i b e s a c o n f l i c t where she does not want to see the p a t i e n t again but requests the p a t i e n t f o r a f o u r t h s h i f t i n order to meet the needs of the f a m i l y . I t i s evident from the t r a n s c r i p t that the f a m i l y needs came before the nurse's. R. You had i n d i c a t e d that t h i s was your f o u r t h s h i f t and you j u s t want that body to go. P. Well I with that p a r t i c u l a r p a t i e n t I f e l t we had gone the whole r o u t e . We had supported the f a m i l y when he f i r s t came i n . We had taken them through the i d e a that he might not l i v e and then he became b r a i n dead and then we j u s t wanted him to go and at that p o i n t there was nothing more that we could do f o r the f a m i l y and we wanted the p a t i e n t to l e a v e . I wanted the p a t i e n t to go. R. But you s t i l l requested that f o u r t h day j u s t P. Because I knew them and I knew they wanted me to be there and a l s o i f I had seen them and I was i n the u n i t I d i d n ' t want them to thin k that I was a v o i d i n g HIM or them. So I j u s t wanted to do i t that way. Another p a r t i c i p a n t d e s c r i b e s the i n t e r n a l d i s c o r d that occurs when the f a m i l y waits f o r the b r a i n dead p a t i e n t to go to the op e r a t i n g room and she does not want them th e r e . P. I t was e a s i e r that the f a m i l y wasn't th e r e . But i t doesn't always work out that way sometimes they want to stay with the person u n t i l they go to the o p e r a t i n g room. R. And how do you f e e l at those times? P. I t ' s i t ' s I can only d e s c r i b e i t as f e e l i n g strange and removed because here i s the f a m i l y member s i t t i n g with someone who i s de c l a r e d b r a i n dead and w a i t i n g to go f o r surgery to take t h e i r body pa r t s away and I guess i t doesn't agree with my inner f e e l i n g l i k e how that p a t i e n t has d i e d . I don't know i f I would do the same think i f that was my family, member i n the bed. But I don't I guess I don't know what to say to them. You know when the person i s not b r a i n dead and you are ICU Nurses and the B r a i n Dead P a t i e n t 81 t a l k i n g to the f a m i l y and you are i n t e r a c t i n g with them and they're u s u a l l y t e l l i n g you about t h i s person. I almost don't know what to say a f t e r they're j u s t s i t t i n g there w a i t i n g to go f o r surgery. Maybe i t ' s because I f e e l awkward. I don't know i f i t ' s because I already f e e l that they died or maybe i t ' s j u s t because I don't know what to say to the v i s i t o r s . And then what do you say when the surgeons come from the ope r a t i n g room and everyone comes and they have never seen t h i s f a m i l y member and they u s u a l l y you know there i s u s u a l l y s i x of them or something and they come and they want n i n e t y - n i n e d e t a i l s about the p a t i e n t and how s t a b l e he's been and they are unhooking him from the monitor and e v e r y t h i n g and [pause]. How does that f a m i l y member f e e l ? Maybe i t ' s j u s t because I f e e l awkward about the whole s i t u a t i o n . At times the emotional s t r e s s f o r the nurse may be so overwhelming that she i s unable to meet the needs of the f a m i l y . P. Now that I have been here i n ICU f o r q u i t e awhile I seem to deal with f a m i l i e s b e t t e r than I d i d i n i t i a l l y . When a young g i r l I had a couple of years ago I t o t a l l y could not deal with the f a m i l y at a l l . I l e t the charge nurse do t h a t . I took care of the p a t i e n t . She took care of the f a m i l y . I couldn't even look them i n the eye. They were a l s o um L a t i n background you know Spanish and very emotional and j u s t I had to c l o s e myself o f f . I probably would have ended up c r y i n g myself as w e l l which probably maybe that would have been a good t h i n g f o r them to see that I could be emotional as w e l l i n s t e a d of being a block of i c e . But f o r me at that time when I was f i r s t new to the ICU i t helped me deal with the p a t i e n t . Now I can cry i n f r o n t of the f a m i l y . I t doesn't bother me. And I think that i t ' s n i c e f o r them to see that we're not i c e b e r g s . That we're capable of emotion and that we're not j u s t machines. I n t e r p e r s o n a l Dissonance When the nurses' b e l i e f s , v a l u e s , o p i n i o n s , knowledge and behaviour oppose those of i n d i v i d u a l s with whom they i n t e r a c t then i n t e r p e r s o n a l dissonance occurs. The f o l l o w i n g s e c t i o n s w i l l present data which demonstrate the ICU Nurses and the B r a i n Dead P a t i e n t 82 e x t e r n a l dissonance that occurs between the nurse and f a m i l i e s , p h y s i c i a n s , the PORT team and even her own nu r s i n g c o l l e a g u e s . The nurse and the f a m i l y . The nurse and the f a m i l y b r i n g t h e i r own d i s t i n c t i v e p e r s p e c t i v e to the s i t u a t i o n i n v o l v i n g the b r a i n dead p a t i e n t . T h e i r d i f f e r e n c e s i n c o g n i t i o n s and a c t i o n s evolve from t h e i r unique knowledge, personal experiences and attachment to the p a t i e n t . Due to these c h a r a c t e r i s t i c s the f a m i l y u s u a l l y has g r e a t e r d i f f i c u l t y a c c e p t i n g the concept of b r a i n death. P. The p u b l i c has a r e a l l y hard time knowing the d i f f e r e n c e . They have a hard time understanding what b r a i n death i s . They come i n here and they see t h e i r loved one on a br e a t h i n g machine and they look p e a c e f u l . They look the same as they were i n maybe the day before when they weren't b r a i n dead and they can't understand that d i f f e r e n c e . They don't r e a l l y understand the concept. I t i s t h i s i n a b i l i t y to accept and comprehend the d i a g n o s i s of b r a i n death which l i e s behind much of the i n t e r p e r s o n a l dissonance shared by the nurse and the f a m i l y . The dissonance between the nurse and the f a m i l y and the r e s u l t i n g p ersonal s t r e s s the nurse f e e l s i s evident i n the f o l l o w i n g case i n v o l v i n g a f a m i l y who could not accept the f a c t that t h e i r eighteen year o l d daughter was b r a i n dead or that she was being cared f o r by a nurse who d i d not b e l i e v e she was going to go home. P. But the f a m i l y they j u s t wanted her back. They d i d n ' t care what she was. They wanted j u s t to have her ICU Nurses and the B r a i n Dead P a t i e n t 83 body back. L i k e they d i d n ' t care how badly i n j u r e d she was or what um she turned out to be. They j u s t wanted her home. That f a m i l y was r e a l l y hard to deal with because you know l i k e they had been t o l d that there was very l i t t l e hope and there was no hope. And they s a i d to me: "So you know l i k e i f there i s no hope what are you doing here?" You know and i t was l i k e ugh. And I s a i d w e l l i f she had any hope t h i s was the only place there was. And that was the only f a m i l y t h a t ' s r e a l l y fought. They a l l fought i t but that one was r e a l l y a g g r e s s i v e towards me. " L i k e why are you doing t h i s ? " or you know l i k e " I f you b e l i e v e that what are you doing here? Get away and get someone e l s e that t h i n k s she can get b e t t e r or whatever." R. And how d i d that make you f e e l ? P. Rotten. L i k e i t was l i k e oh! I t made you thin k about what you were doing but I you know f e l t l i k e my answer was the only one I had l i k e she came i n she wasn't gone. We d i d e v e r y t h i n g we c o u l d . I f there was a chance f o r her to s u r v i v e we were g i v i n g i t to her...They wanted her home. They wanted her. They di d n ' t care i f she could do nothing but l i e i n the bed. They j u s t d i d n ' t want to l o s e her and because I was r e i n f o r c i n g how poorly she was doing and that she was g e t t i n g worse and worse and you know that because I was g i v i n g them no hope. They're say i n g : "Well why are you here? Why are you even bo t h e r i n g then?" I t was j u s t t h e i r g r i e f I thin k and i t was f i g h t i n g back at me because she s t i l l i s a l i v e f o r the f a m i l y and she was i t took her a few days to become b r a i n dead. There was j u s t a r e a c t i o n you know. R. Is that because you weren't t e l l i n g them what... P. They wanted to hear so they were s t r i k i n g back. In another s i t u a t i o n , a brother of a b r a i n dead man i n s i s t s that only he i s to t e l l h i s mother of the death of her son. However, the brother i s unable to b r i n g h i m s e l f to t e l l h i s mother and when the mother a r r i v e s she i s unaware her son i s dead. A d i s c o r d e x i s t s between the s u r v i v i n g son and the nurse when the nurse attempts to t e l l the mother of her son's death. ICU Nurses and the B r a i n Dead P a t i e n t 84 P. She [the mother] was sayi n g : "Oh w e l l tomorrow he w i l l be f i n e and he f e e l s so n i c e and warm." and a l l t h i s r o t and so I s o r t of k n e l t down beside her. L i k e I'm down low almost at the bed frame l e v e l and I'm lo o k i n g up at her and he [the brother] i s t r y i n g to catch my face so that I wouldn't say anything to which I s a i d : "What do you know about what's wrong with your son?" And she s a i d : "Oh w e l l he's j u s t had a headache or something or other." And I s a i d "No." I explained what had happened and that he had a very bad bleed and he e s s e n t i a l l y was gone. And she s a i d : "Oh no, he i s s t i l l b r e a t h i n g . " And so I had to e x p l a i n to her about the v e n t i l a t o r and I s a i d i f I took that away h i s body wouldn't work and she s a i d something e l s e and i n the mean time the son i s r a d i a t i n g t h i s : "Don't you dare t e l l her" busin e s s . You could j u s t f e e l i t . So she asked a few more questions and then she s a i d something and I s a i d : "Your son i s dead. Your son died l a s t n i g h t . " And she s a i d no a couple of times and then she s a i d : "Well you're with your dad now" because the dad had died as w e l l . And o f f she went o f f to the back room. And the son was j u s t r i g h t o f f p i s s e d o f f , r i g h t . And that what was harder then t a k i n g care of him [the b r a i n dead p a t i e n t ] , R. How d i d you a c t u a l l y f e e l at that time t h i s was going on? P. I was p i s s e d o f f because we had a very lengthy d i s c u s s i o n with the f a m i l y that afternoon and the r e s p i r o l o g i s t had, we made t h i s agreement that the son would t a l k to h i s mom. And I mean that was t e r r i b l e f o r her you know to come i n and i t wouldn't have made i t easy whether she had heard i t i n the a i r p o r t or whether she heard i t here. But she came a l l the way from the a i r p o r t with these e x p e c t a t i o n s of that he was going to get b e t t e r and l i k e he then d i d n ' t do anything to i n t e r v e n e with her. And so I was r e a l l y p i s s e d o f f . R e a l l y p i s s e d o f f . . Well but I mean there was not much that you could r e a l l y do about t h a t . . . . i t would have been d i f f e r e n t to t e l l her i f you knew you were going to t e l l her because your approach i s a l i t t l e d i f f e r e n t . You know what I mean? Where you don't walk i n t o i t as c o l d as you do i n that s i t u a t i o n . L i k e you don't even have time to s o r t of prepare y o u r s e l f to t e l l them l e t alone handle...see where i t ' s going to go. I t ' s r e a l l y a v o l a t i l e s i t u a t i o n at that moment because you've got the son whose f u r i o u s and you've got a mother whose j u s t c l i n g i n g to hope and then because we don't u s u a l l y not the nurses we don't u s u a l l y t e l l I ICU Nurses and the B r a i n Dead P a t i e n t 85 mean I think I've t o l d three people that t h e i r f a m i l y person i s gone. When the f a m i l y and the nurse hold opposing b e l i e f s r e g a r d i n g organ t r a n s p l a n t a t i o n then i n t e r p e r s o n a l dissonance i s present. T h i s i s evident i n the f o l l o w i n g account. P. L i k e I'm saying before u s u a l l y there i s a b i t of anger with...the b r a i n dead p a t i e n t that they don't want to donate organs f o r some... p a r t l y sometimes the fa m i l y j u s t hasn't come to a d e c i s i o n because they don't r e a l l y know what i t means and the other one i s almost l i k e maybe i t ' s been a waste or why why don't they understand about organ donation. Another informant d e s c r i b e s the dissonance which occurs when she i s performing care with the hope that the f a m i l y w i l l consent to donation and the f a m i l y i s q u e s t i o n i n g why she i s p r o v i d i n g the care. P. I thin k i t was eye care. Cause the whole reason I was doing that was because i n case they donated I wanted make sure h i s corneas were ok. And I think my response was that i t was a r o u t i n e procedure that we did f o r everyone that was on a v e n t i l a t o r or something l i k e t h a t . And without I d i d n ' t want to say: "Because I'm hoping that you're going to be donating h i s corneas t h e r e f o r e I want to make sure they stay moist and i n good c o n d i t i o n . " I think I s a i d i t was because t h i s was a normal procedure f o r everyone on a v e n t i l a t o r or something l i k e t h a t . Not that your eyes get dry i f you're on a machine but I think I j u s t s o r t of i n c o r p o r a t e d i t and that seemed to s a t i s f y them. Another i n s t a n c e of dissonance i s when the nurse i s aware of what the p a t i e n t ' s outcome w i l l be and the f a m i l y i s not. P. I don't know i f any one th i n g i s the hardest t h i n g to do. I t would probably be supporting the f a m i l y or d e a l i n g with the f a m i l y during that phase when you as a ICU Nurses and the B r a i n Dead P a t i e n t 86 nurse t h i n k t h i s person i s going to be b r a i n dead but they don't know i t yet. R. And you can't r e a l l y . . . P. You can't come out and say: "Well gee I thin k t h i s person i s going to be b r a i n dead" or whatever. You have to keep that b i t of i n f o r m a t i o n to y o u r s e l f . I think the hardest t h i n g i s i s that phase because you have to allow them to have some hope even though you y o u r s e l f are t h i n k i n g : "Gee there i s probably no way that he w i l l ever r e c o v e r . " The nurse and the p h y s i c i a n . The d i s c o r d which occurs between the nurse and the p h y s i c i a n i s r e l a t e d to aspects of the medical management of the b r a i n dead p a t i e n t which have an impact on the nurses' delegated f u n c t i o n s . These aspects i n c l u d e decision-making, c o n s i s t e n c y of approach i n management and ' i n a p p r o p r i a t e ' p h y s i c i a n a c t i o n s . Each of these components of medical management leads to the nurses performing f u n c t i o n s which are counter to t h e i r b e l i e f s , values or knowledge. With regard to decision-making the nurses b e l i e v e there i s an unnecessary p r o l o n g a t i o n of v i t a l f u n c t i o n s i n a dead p a t i e n t due to a h e s i t a n c y by the p h y s i c i a n to make a d e c i s i o n which would terminate l i f e support. P. L i k e why are we doing t h i s ? E s p e c i a l l y i f i t i s somebody that you know i s not going to be used f o r organ r e t r i e v a l and you're j u s t w a i t i n g f o r them [the p h y s i c i a n s ] to perhaps make a d i a g n o s i s or say that there i s nothing more that we can do so shut o f f . Or why are they w a i t i n g f o r t h i s to go on and on? Because you know that p h y s i c i a n doesn't l i k e making these d e c i s i o n s . So they s i t on i t and they wait u n t i l morning or whatever and we know i t ' s not going to get any b e t t e r . So why don't you j u s t get on with i t and do i t now? That's f r u s t r a t i n g . That's hard to deal with something l i k e t h a t . Well s i n c e the l a s t few ICU Nurses and the B r a i n Dead P a t i e n t 87 years I guess maybe we've [the nurses] become more aggressive...and say: "Th i s i s i t ! T h i s i s b l a c k . T h i s i s white. And there i s no i n between so make a d e c i s i o n and q u i t w a f f l i n g ! " And I w i l l go up to them and I w i l l say that and I don't care i f i t i s the D i r e c t o r of the u n i t or what. But sometimes I thin k they need a l i t t l e push! The e x t e r n a l disharmony f o r t h i s nurse i s evident i n her q u e s t i o n i n g and her statement " T h i s i s i t ! T h i s i s bl a c k . T h i s i s white..." S e v e r a l accounts i n d i c a t e i n t e r p e r s o n a l dissonance which i s r e l a t e d to not only a h e s i t a n c y of the p h y s i c i a n to make a d e c i s i o n but a l s o to the p h y s i c i a n a l l o w i n g the f a m i l y to determine whether or not treatment should be d i s c o n t i n u e d . P. I t was a twenty-seven year o l d whose notes d e c l a r e d him b r a i n dead on F r i d a y morning. I came on, on Sunday morning and was assigned to the person, t h i s p a t i e n t . Ah you know l i k e I got r e p o r t ugh i t was l i k e WHAT ARE WE DOING THIS FELLOW HAS BEEN DEAD SINCE FRIDAY MORNING. You know l i k e I d i d n ' t even go near the p a t i e n t u n t i l I t a l k e d to the doctors and s a i d : "Excuss me what's going on here? What are we doing?" And the fa m i l y w e l l i n my o p i n i o n the f a m i l y was allowed a l i t t l e b i t too much leeway. Donation was out of the que s t i o n , which was f a i r enough. I t i s e n t i r e l y up to the f a m i l y . And i t r e a l l y doesn't make a whole l o t of d i f f e r e n c e to me. When you decide yes or no I f e e l that i t i s e n t i r e l y up to them and there i s no pressure from any...there should be no pres s u r e . But t h i s f a m i l y had an i n c r e d i b l e b e l i e f i n God. Because God was going to wake t h i s f e l l o w up and he was going to get out of bed and walk. And no one could shake t h a t . And so they would not l e t us turn o f f the v e n t i l a t o r . Not that I thought that they should have a choice because there i s no choice the person i s gone...I looked a f t e r him a l l day and Monday he was s t i l l there and then we had a change of doctors and that was the end of that nonsense. R. How would you d e s c r i b e your f e e l i n g s when you came i n on Sunday? ICU Nurses and the B r a i n Dead P a t i e n t 88 P. Well l i k e d i s g u s t or j u s t l i k e there i s NO POINT WE ARE NOT DOING ANYTHING HERE. You're wasting time, re s o u r c e s , p r o l o n g i n g the f a m i l y . . . t h e hope or whatever. They can't get along with t h e i r l i v e s . L i k e i t i s j u s t a waste of e v e r y t h i n g , of emotion, of eve r y t h i n g you know. I don't want to spend the day tu r n i n g and l o o k i n g a f t e r a p a t i e n t that has been two days dead j u s t because the f a m i l y can't turn o f f the v e n t i l a t o r . They don't have a choice i n the matter. They l o s t t h e i r son when h i s head h i t the curb...Well yeah I get angry when...you know that you're j u s t p r o l onging death. Everybody knows that but the f a m i l y wants you to c a r r y on and I thin k there i s j u s t too much choice given to the f a m i l y because i t ' s not f a i r to ask someone. To give them a choice when there i s n ' t a c h o i c e . . . They've l o s t the choice because we even we don't have a c h o i c e . We can prolong i t but we cannot stop i t . Another nurse v o i c e s the same concerns r e g a r d i n g p h y s i c i a n s d e l a y i n g the order to d i s c o n t i n u e v e n t i l a t i o n . P. The problem I have i s when the p a t i e n t i s considered b r a i n dead and there i s a delay i n removing them from the v e n t i l a t o r . In my o p i n i o n they [the f a m i l y ] should . be t o l d that the p a t i e n t i s dead. They're [the p h y s i c i a n s ] t a k i n g him o f f the v e n t i l a t o r . The f a m i l y should be t o l d t h i s . There shouldn't be any room f o r : "Is i t ok i f we take him o f f ? " That i s not a d e c i s i o n f o r them to make...But I know there has been a few delays i n t a k i n g them o f f the v e n t i l a t o r and I r e a l l y f i n d i t d i f f i c u l t to deal with those d e l a y s . Once they are considered b r a i n dead, they have gone through a l l the t e s t s I think they should be removed r i g h t now. That's the e t h i c s part that I f i n d f r u s t r a t i n g . R. And so you don't f e e l the f a m i l y should be given any f u r t h e r time when they have been t o l d the p a t i e n t i s b r a i n dead and.. P. No. I think they should be removed from the v e n t i l a t o r and i f the f a m i l y wants to come i n then and view the body t h a t ' s e x a c t l y what would happen i f a person died i n a r e g u l a r way on a f l o o r . I don't know what we are d e l a y i n g t a k i n g them o f f the v e n t i l a t o r f or. ICU Nurses and the B r a i n Dead P a t i e n t 89 I f the p h y s i c i a n b r i n g s the f a m i l y i n t o the d e c i s i o n making process then c o n f l i c t may a r i s e because some nurses b e l i e v e i t i s a r e s p o n s i b i l i t y that the f a m i l y does not want. P. Um hum and a l l you know THEN you know because you tend to have to smooth over the t r o u b l e d waters and because the...going back to t h i s l a s t case they [ p h y s i c i a n s ] were t a l k i n g about the p a t i e n t becoming a no code. He wasn't b r a i n dead yet and they sat there and t a l k e d to the f a m i l y about i t but they ended up so I went i n on the conference and there were about seven f a m i l y members and t h i s p h y s i c i a n . And they ended up the p h y s i c i a n almost posed i t a b i t as a q u e s t i o n : "Well we are going to make him a no code. What do you t h i n k ? " And of course the f a m i l y was j u s t i n t u r m o i l because they couldn't make that kind of d e c i s i o n and so the doctor l e f t . And I must have spent about a h a l f an hour with them afterwards because I know they weren't happy with the i s s u e that he had r a i s e d and j u s t wanted to f i n d out why they weren't happy. And so you get each one to t e l l you. You can see that there i s something on t h e i r mind and um i t j u s t came out that they d i d not want to have to say: "Ok don't r e s u s c i t a t e him." Because i n t h e i r mind he wasn't b r a i n dead yet and they d i d n ' t want to f e e l l i k e they were t u r n i n g him o f f which a l o t of f a m i l y members... can you blame them? You can't blame them f o r not wanting to turn someone o f f . I t doesn't matter that he i s going to d i e e v e n t u a l l y . Two p a r t i c i p a n t s b e l i e v e that the l a c k of a medical d e c i s i o n i s not so much a h e s i t a n c y to make the d e c i s i o n but r e l a t e s more to simply not g e t t i n g around to making the d e c i s i o n . P. Why am I doing t h i s ? I know...there i s no point and sometimes I had a p a t i e n t that you know i s b r a i n dead that they [the p h y s i c i a n s ] j u s t haven't d e c l a r e d them b r a i n dead y e t . I t ' s the night time and they w i l l be coming i n the morning to do t h a t . So you as you're doing the mouth care and the back rubs your t h i n k i n g that t h i s i s r e a l l y a waste of energy. ICU Nurses and the B r a i n Dead P a t i e n t 90 P. I f the person not going to be a donor and i s b r a i n dead and sometimes they [the p h y s i c i a n s ] keep on doing things when you know that you know they j u s t haven't come around and wr i t e the orders to or they haven't I don't know i t depends on the s i t u a t i o n i f they are s o r t of prolonging the i n e v i t a b l e then I you know I don't l i k e i t put i t that way and I j u s t think w e l l they're j u s t making t h i s making t h i s l a s t longer f o r nothing r e a l l y you know...I j u s t kind of get f r u s t r a t e d you know and think w e l l i t ' s not the way i t should be but you know I have to do i t type of thing...but I mean there a l o t s of l i t t l e t h i n g s sometimes you don't agree t o t a l l y but you know I j u s t kind of get f r u s t r a t e d a b i t and you do them and you might say to somebody e l s e or something or I w i l l t a l k to the other nurse a b i t or the charge nurse or something but you know you say something to somebody then you get reassurance t h a t ' s not you. Get your f r u s t r a t i o n s out I guess. Yeah. One p a r t i c i p a n t d e s c r i b e s the i n c o n s i s t e n c i e s that occur when w a i t i n g f o r the p h y s i c i a n s to make the d i a g n o s i s of b r a i n death. P. And I'm i n v o l v e d the day that they [ p h y s i c i a n s ] make the d e c i s i o n that t h i s p a t i e n t : "Yes he i s b r a i n dead." While w a i t i n g f o r that d e c i s i o n I f i n d i t more d i f f i c u l t and s o r t of l i k e i n c o n s i s t e n c i e s t h e r e . R. I n c o n s i s t e n c i e s ? P. Right l i k e we're s o r t of assuming that t h i s p a t i e n t i s . . . b r a i n dead and we're c a r r y i n g on e v e r y t h i n g a g g r e s s i v e l y and then they w i l l do these t e s t s l i k e apneic t e s t s and s t u f f and THEN the p a t i e n t i s b r a i n dead um... R. One moment he i s a l i v e and then the next minute P. He's not. Right and i n that moment while the d e c i s i o n i s being formulated or being determined I f e e l very i m p a t i e n t . L i k e I f e e l l i k e I am t r e a d i n g water and hurry up and wait type of t h i n g . And then I f i n d i t hard to you go with the i n o t r o p e s [ i n c r e a s e s heart c o n t r a c t i l i t y ] and go with you l i k e I want t o . . . i f you think he i s b r a i n dead then ok l e t s stop doing t h i s you know and l e t me j u s t comb h i s h a i r and bath him and do ev e r y t h i n g that I think that I pe r c e i v e as comforting but i t ' s that t r a n s i t i o n p o i n t l i k e j u s t i f I'm ICU Nurses and the Brain Dead Patient 91 involved when they are making their decision that I find it a bit hard. At other times the participants encounter interpersonal dissonance because the medical decisions are being made by medical residents or interns who lack the knowledge and experience required to care for a brain dead patient. P. Because I felt any chance the organs had of being usable was wrecked and we had inexperience looking after him and you couldn't get them to UNDERSTAND like you could die with those numbers right but it you're trying to save the organs we want good numbers... you keep them as best you could. That was really frustrating. The blood pressure would be through the roof and then in the boot's. It was a brand new bunch, everybody was new and you couldn't get them to...it was just they didn't know what the hell they were doing looking after somebody that was brain dead and the problems that could happen. One participant tells of a situation involving a man with Lou Gehrig's Disease who had been resuscitated twice and was now brain dead. But she feared that the inexperience of the intern might result in heroics again being performed if his heart stopped, therefore despite the fact she wanted him to die with dignity she felt she had to do all she could to keep him going. P. He was brain dead. So he wasn't an organ donor. He was not kidney he was nothing. It was just, he was dead brain dead. And I did have a bit of trouble in a sense dealing with that because he hadn't been made a no code. We had been told he was brain dead but there was no clarification of what we are to do in a myocardial arrest and the day nurse hadn't had it clarified. It had been made at sort of shift change and the cardiologist had gone home...I was afraid that if this man coded that our interns, new interns who had been on the unit three or four days were going to start jumping on him because this myocardial hadn't been clarified. THAT'S my concern, my concern was for ICU Nurses and the Brain Dead Patient 92 the patient that we should start beating up on him again that he couldn't die with a bit of dignity. I mean he had lost his dignity anyway when he tried to die but then when he was trying to die again in the unit I was afraid that and certainly that could happen. His blood pressure dropped and inotropes were started before she [the intern] started the second inotrope I asked that she call the respirologist and get all this clarified...I felt that she should she didn't have the expertise to carry on but she did. She called the respirologist and he fortunately said don't do anything more...So I felt better about that but ah I was afraid he'd...I was doing my best to keep him alive during the night because I was afraid if he did start to die that they would start heroics on him because of this lack of clarification on the no code order. But I was upset purely for him as a chronically i l l person he was obviously dead at this point and was trying to go the whole to do the whole shooting match it appeared to me. The participants also experience dissonance when the physician decides cardiopulmonary resuscitation (CPR) should be performed on a brain dead patient.2 P. We were really annoyed because it was a situation where the lady was BRAIN DEAD but we had a cardiologist who is just sort one of those cardiologists who just isn't very good. I don't know how to say that but anyways that's the problem. And she would not write a no code. She just wouldn't and but she had principal care of the patient. And what do you do? Like the other guys can't override her so the patient coded and unfortunately simultaneously there was a code in CCU, which was a viable code so everybody whipped over there and then we called our code and the CO came up. And we all started talking at once, like all of us around the bed started talking at once: "This lady is brain dead da da da." And the CO looked at us and said: "What the heck are you doing?" And so we explained quickly why we were doing but we were all really unhappy about it. And he just said stop. But it I mean it took the dignity of the lady away. I mean you know ah and I mean our patients have very little left by the time they go through our system, hey. So I mean anytime we can fight to preserve that I mean we do and in this 2. Approximately 10% of all donors experience cardiopulmonary arrest that requires resuscitation during the maintenance phase. (Darby, Stein, Grenvik, Stuart, 1989) ICU Nurses and the B r a i n Dead P a t i e n t 93 case we d i d n ' t get very f a r . We stopped i t as soon as we co u l d . R. How d i d you f e e l at that p o i n t when the CO s a i d to stop? P. Oh thank goodness. Everybody was pleased because i t was something that shouldn't have been begun i n the f i r s t p l a c e , you know. I t ' s j u s t one of those bad s i t u a t i o n s that you can't get r e s o l v e d u n t i l something happens. One p a r t i c i p a n t i n d i c a t e s that she has mixed f e e l i n g s about performing CPR on a b r a i n dead p a t i e n t . P. Well I-I have mixed f e e l i n g s on that and i f i t ' s gone that f a r I guess I think j u s t l e t t i n g them go and you know kind of the body has made the choice f o r i t . But o f t e n times I guess i t ' s because we've allowed the e l e c t r o l y t e s to get out of balance. You could say i t i s our f a u l t that t h i s i s happening at t h i s time. L i k e i n the one time...the circumstance I am t h i n k i n g of i t was because people weren't aware and on top of these t h i n g s and so we tend to do things to some people i f i t ' s something that medicine has caused. We t r y to r e t r i e v e that f a s t e r . So I have mixed f e e l i n g s . I p e r s o n a l l y i f tha t ' s the way sometimes I think why not j u s t l e t them go and you know they've died kind of twice now. On the other hand then I know l i k e i n the one p a t i e n t I thin k I was t a l k i n g about i t was medicine's f a u l t that um i t happened. I mean do c t o r s , nurse you know l i k e i t was j u s t everybody j u s t wasn't g e t t i n g i t together on. R. So you f e e l more of an o b l i g a t i o n to go ahead i n those cases? P. Well I have mixed f e e l i n g s about t h a t . I can see why that you would want to do i t . The l a c k of a c o n s i s t e n t approach i n the medical management of the b r a i n dead p a t i e n t and h i s f a m i l y c r e a t e s dissonance f o r the nurse who i s f o l l o w i n g the medical o r d e r s . The previous account r e g a r d i n g the b r a i n dead p a t i e n t who was t r e a t e d f o r three days, u n t i l a change i n ICU Nurses and the B r a i n Dead P a t i e n t 94 m e d i c a l d i r e c t o r s , i l l u s t r a t e s t h i s i n t e r p e r s o n a l d i s c o r d (see page 8 7 ) . T h i s l a c k of c o n s i s t e n c y i n approach i s a l s o apparent i n the f o l l o w i n g statement of another p a r t i c i p a n t . P. I mean we have a t any one time t h r e e to f i v e r e s i d e n t s and t h r e e d i r e c t o r s t h a t a l t e r n a t e c a l l a week and they a l l have d i f f e r e n t p h i l o s o p h i e s . So I mean i f you have t h r e e d o c t o r s i n t h r e e weeks i n a row you can see t h r e e d i f f e r e n t approaches to i t . And I t h i n k as a nurse i t ' s d i f f i c u l t because you s o r t of t r y to a l i g n y o u r s e l f w i t h what the approach i s t h a t week but I t h i n k i t i s something t h a t n u r s i n g i s going to s t r u g g l e w i t h f o r a l o n g t i m e . At times the i n c o n s i s t e n c i e s i n m e d i c a l management i s due to disagreements between d i f f e r e n t p h y s i c i a n groups. The r e s u l t a g a i n i s p e r s o n a l s t r e s s r e l a t e d to the nurs e ' s b e l i e f s c l a s h i n g w i t h events o c c u r r i n g a t the b e d s i d e . P. The h a r d e s t p a r t i s t a k i n g c a r e of p a t i e n t s where t h e r e i s no d e c i s i o n b e i n g made and they are j u s t w a f f l i n g . . . Oh one of them, the l a s t one the young f e l l o w I was t a l k i n g about they thought i t was going to be a c o r o n e r ' s c a s e . And the co r o n e r was not going to l e t the p a t i e n t go...to be r e t r i e v a b l e f o r PORT and they were j u s t h o l d i n g back and t h a t was f r u s t r a t i n g because we c o u l d n ' t go ahead w i t h what we wanted to do to get him ready f o r PORT and then we c o u l d n ' t stop because we d i d n ' t know i f he was going to be a c o r o n e r ' s case or n o t , i n which case we'd j u s t send him o f f to the morgue, so t h a t they c o u l d have done pa t h o l o g y on him [pauses] and the f i g h t i n g g o i n g on between the two d i f f e r e n t the p a t h o l o g i s t and the o t h e r . . . c o r o n e r and the PORT team whether they s h o u l d take i t or whether they s h o u l d n ' t or what the l e g a l a s p e c t s of i t and a l l . t h i s s t u f f . R. Did t h a t happen a t the bedside? P. I t d i d some of i t . R. And d i d i t i n v o l v e you d i r e c t l y or P. No, j u s t i n d i r e c t l y . R. But bei n g t h e r e and h e a r i n g i t had an a f f e c t on you? ICU Nurses and the B r a i n Dead P a t i e n t 95 P4. Yeah ( s o f t l y spoken). I t ' s d i f f i c u l t t h a t they were m a i n t a i n i n g t h i s t h i s young man w i t h o u t making a d e c i s i o n and j u s t s o r t of h o l d i n g i t a l l i n the a i r and you're h o l d i n g h i s w e l l he doesn't have a l i f e , he's not a l i v e anymore but j u s t h o l d i n g him u n t i l they made a d e c i s i o n and i t was l i k e I wanted to get i t done and over w i t h so we c o u l d go on w i t h the next stage or the next p a t i e n t or whatever. P h y s i c i a n a c t i o n s which the nurse b e l i e v e s are i n a p p r o p r i a t e i n the management of the b r a i n dead p a t i e n t or the p a t i e n t ' s f a m i l y a re another s o u r c e of i n t e r p e r s o n a l d i s s o n a n c e . The f o l l o w i n g two a c c o u n t s h i g h l i g h t the d i s c o r d between the nurse and the p h y s i c i a n . P. I t was a r e s i d e n t who was doi n g a paper and he wanted some numbers f o r h i s s t u d y . And I t o l d him to get l o s t . And i t was a young p a t i e n t who was a head i n j u r y and I t h i n k everyone was a l i t t l e a f f e c t e d by t h a t one and i t was very s o r t of u n s e t t l i n g . A r e a l l y n i c e f a m i l y , very upset and i t was a very s o r t of e m o t i o n a l b e d s i d e and I t h i n k he had been w i t h us f o r t h i r t y - s i x hours or something l i k e t h a t b e f o r e he had been d e c l a r e d but everyone knew what the outcome was goin g to be. The f a m i l y was r e a s o n a b l y p r e p a r e d f o r i t as much as they c o u l d be and the r e s i d e n t was d o i n g some paper about some s t u d y . He [ t h e p a t i e n t ] happened to have a Swan Gantz i n so he [ t h e r e s i d e n t ] wanted numbers done f r e q u e n t l y , keep the study done e t c e t c and i t was j u s t so seemed s i l l y to be doing a l l t h a t s t u f f . And he backed o f f . He backed o f f . I t h i n k he c o u l d a p p r e c i a t e a f t e r w a r d s when we s o r t of d e s c r i b e d the s i t u a t i o n at the be d s i d e t h a t maybe t h i s was not the most a p p r o p r i a t e p a t i e n t to be doing t h i s on. P. W e l l as I say a c t u a l l y when they a re d e c l a r e d b r a i n dead you know e v e r y t h i n g i s p r e t t y c ut and d r y . Except f o r t h i s case I had the o t h e r n i g h t and the i n t e r n wanted to do an x-ray on him and I s a i d : "What are you goin g to do when you get an x-ray back? I mean w i l l i t make you f e e l b e t t e r to see t h a t h e ' s . . . t o see something wrong w i t h him. You're going to have to t r e a t i t but i f you don't know what i s wrong w i t h him then you don't have t o . " So maybe I do q u e s t i o n but ICU Nurses and the B r a i n Dead P a t i e n t 96 yeah I quest i o n I'd questioned anything that I would think i s you know r i g h t e t h i c a l l y r i g h t or m e d i c a l l y r i g h t I would ques t i o n i t . The nurse and the PORT Team. Some p a r t i c i p a n t s experience a c l a s h i n g of t h e i r values with the a c t i o n s of members of the P a c i f i c Organ R e t r i e v a l f o r T r a n s p l a n t a t i o n (PORT) Team. The dissonance r e l a t e s not so much to the e t h i c s of t r a n s p l a n t a t i o n but more to what the nurses p e r c e i v e as an overzealousness of the team and a la c k of resp e c t f o r the person who the donor once was. The f o l l o w i n g i l l u s t r a t e s the strong emotions t h i s dissonance evokes i n the nurses. P. What I r e a l l y hate more than anything and you see a couple of times i s before the person i s a c t u a l l y dead [ h i t s t a b l e with f i s t ] they maybe p r e t t y c l o s e to i t , j u s t have a couple of r e f l e x e s to go but they're not gone yet i s um t a l k i n g about donation or seeing people that are on the t r a n s p l a n t teams come nosing around. L i k e I hate that more than anything...I l i k e to have that person to be gone b e f o r e . We can t a l k about i t and say i t i s a p o t e n t i a l and t h a t ' s what we are wa i t i n g f o r but not to the point of having the people d e a l i n g with the r e c i p i e n t come and have a l o o k . . . I don't l i k e i t because the person i s n ' t dead y e t . L e t ' s at l e a s t give him a chance to f i n i s h dying before we s t a r t t a k i n g out h i s b i t s and pieces...One f e l l o w came up from Emerg and he had numerous t h i n g s . He extended to pain at l e a s t on one s i d e . I t was a few things he did and alr e a d y the notes were t a l k i n g about organ donation. Well f i n e . Wait u n t i l he's dead [ h i t s t a b l e three times] and then l e t s d e al with i t . L i k e p o t e n t i a l organ donor sounds f i n e . They come up and they're b a s i c a l l y b r a i n dead but not when you can e l i c i t a pain response...I can accept the f a c t that i s where we are headed and be aware of that but while there i s s t i l l something l e f t of that person then l e t s not i n v o l v e the r e s t of the team or whatever u n t i l they're g o n e . . . l i k e l e t s wait u n t i l he d i e s before we s t a r t t a l k i n g about what pa r t s we can use here and who they are going to f i t i n here. I j u s t get so angry when I see someone creeping around or sending over ICU Nurses and the B r a i n Dead P a t i e n t 97 t h e i r s p i e s I j u s t f e l t l i k e i s because they know they are not welcome h e r e . . . I t h i n k i t was ex p r e s s e d p r e t t y s t r o n g l y t h e r e t h a t we d i d n ' t l i k e the v u l t u r e s coming around u n t i l they were i n v i t e d . P. I t h i n k . . . i t ' s r e a l l y hard t o say p r o b a b l y because t h e y ' r e [ t h e b r a i n dead p a t i e n t ] y o u t h . I t , and the h o v e r i n g of the team, the PORT team or whomever w a i t i n g f o r them to d i e . I j u s t don't l i k e t h a t v u l t u r e s t a n d i n g t h e r e w a i t i n g . That I f i n d d i f f i c u l t not a c t u a l l y c a r i n g f o r the body as such p r e t t y d i f f i c u l t . We're doi n g a l l the work f o r i t . In a d d i t i o n , one p a r t i c i p a n t b e l i e v e s the premature presence of the t r a n s p l a n t team p l a c e s an unnecessary p r e s s u r e on the f a m i l y members. P. They're [t h e t r a n s p l a n t team] not supposed to be anywhere i n the c o u n t r y u n t i l t h a t p a t i e n t i s d e c l a r e d . I t would be a c o n f l i c t of i n t e r e s t . There have been a few problems i n the past where maybe the t r a n s p l a n t team i s s c o u t i n g or whatever. Or i f t h e r e i s a p a t i e n t t h a t they hear i s not doi n g w e l l . And so we j u s t s a i d b a s i c a l l y t h a t u n t i l we d e c l a r e them f o r them to back o f f and we would c a l l them when the p a t i e n t was d e c l a r e d . . . W e l l the f i r s t few [ b r a i n dead p a t i e n t s ] t h a t were around they j u s t seemed to be i n the u n i t . You know c h e c k i n g t h i n g s out and s a y i n g : "How's t h i n g s g o i n g ? " And I t h i n k a few people were s e n s i t i v e to t h a t f a c t l i k e you know here they a re snooping and the p a t i e n t i s n ' t even d e c l a r e d . So um I t h i n k i t i s best f o r them to s t a y away and t h e y ' r e q u i t e happy to do t h a t or a t l e a s t most of them are they have backed o f f . R. So t h a t bothered you i n i t i a l l y ? P. W e l l yeah. Yeah i t d i d I f i g u r e d the f a m i l y had to make a d e c i s i o n and I don't t h i n k they s h o u l d have any p r e s s u r e put on them j u s t because somebody was w a i t i n g f o r a h e a r t or you know whatever. I t ' s t h e i r d e c i s i o n to make. People do not want to donate a l l the ti m e . One p a r t i c i p a n t f e e l s the p u b l i c i z i n g of the need f o r organ donors by PORT was r e s p o n s i b l e f o r a c o n f l i c t where ICU Nurses and the Brain Dead Patient 98 family members were pressuring a mother to donate her daughter's organs. P. I used to be r e a l l y gung ho for PORT. I'm not as gung ho for PORT because PORT pushes too hard. Pushes too hard for r e t r i e v a l of organs. And I understand down the road they have a positive value... We've discussed this at length at work because i t . . . a h some people are r e a l l y gung ho. It doesn't matter. It doesn't matter how you get the organs as long as you get them so you w i l l benefit somebody, ok...there i s a lo t of ads for PORT hey. And there was at that particular time there had been several big things on BCTV about organ donation and i t was just around that time...I had even seen them on TV and at the time I said: "Whoa l i k e they're r e a l l y pushing too hard." And l i k e you know people get on ideas and they go with them and we had commented on that they were pushing a l i t t l e too hard at that time and probably enough to influence one or two members of the family. And so as a result the pressure on this one family member was extremely. R.. How did you personally f e e l at that time? P. Oh I was annoyed about that cause you can't contravene a person's rights with ah sort of humanitarian goal down the road of you know look at a l l these people we are going to help, ok. For this participant the promoting of transplantation by PORT opposes her opinion that people should be free to make their own decisions without any pressure. With regards to this particular case, this nurse also describes interpersonal dissonance occurring among the nursing s t a f f (page 102). Another participant finds her personal values are in c o n f l i c t with how the transplant team treats the brain dead patient. From her position the team does not give the patient the respect he deserves for once having been a l i v i n g person. ICU Nurses and the B r a i n Dead P a t i e n t 99 P. And i t ' s sometimes easy to become a l i t t l e b i t p r o t e c t i v e i n a way or a l i t t l e b i t t e r i n a way wi th the whole process of a n a l y z i n g and e n s u r i n g that they are good matches and e v e r y t h i n g e l s e because I t h i n k i t g e t s . . . I use the term v u l t u r i s t i c a l i t t l e b i t . And y o u ' r e l o o k i n g a f t e r t h i s p a t i e n t t h a t ' s i n the bed and y o u ' r e t r y i n g to ensure that t h e i r a irway i s patent and that t h e i r v i t a l s i g n s are s t a b l e . T h e y ' r e i n a good c a r d i o v a s c u l a r b a l a n c e . Oxygen exchange i s good. T h e i r f l u i d s are j u s t on and i f t h e y ' r e i n DI you've got that matched up and you've got t h e i r e l e c t r o l y t e s j u s t r i g h t , you know. H e m a t o l o g i c a l s t a t u s i s f i n e . And i t ' s . . . t h e y I f e e l d e f i n i t e l y come i n and they look at numbers and they look at l i n e s and they d o n ' t l ook at who i s a t t a c h e d at the end of that which maybe j u s t very p e r t i n e n t I t h i n k but I t h i n k sometimes i t i s a l i t t l e b i t hard when you have been d e a l i n g w i t h t h i s p a t i e n t two or three days . Perhaps i t has been a l o n g e r process f o r the development of b r a i n death that a l l of a sudden bang that i s the end of i t and they are now a potass ium of 3 . 4 . They are not M r . Jones who has a potass ium of 3 . 4 . They are the p a t i e n t over there who has a potass ium of 3.4 or t h e i r hemoglobin has dropped and I f i n d sometimes that i s a l i t t l e b i t d i f f i c u l t to d e a l w i t h . That i t i s i t ' s . . . t h e y a l l look at numbers and a l t h o u g h I always f e e l l i k e I am c o n t r a d i c t i n g myse l f so much when we are d i s c u s s i n g these t h i n g s because I do r e a l i z e the importance of that and I mean what i s the p o i n t of s a y i n g poor M r . J o n e s . Mr Jones i s now b r a i n dead so we have to get on wi th the duty of the day which i s to f i n d a match i f they have c o n s e n t e d . Another in formant i n d i c a t e s that the sending of a thank you l e t t e r by PORT i s o f f e n s i v e . P . The o ther t h i n g PORT g i v e s us i s a l i t t l e l e t t e r which t e l l s which thanks you f o r l o o k i n g a f t e r . . . t h e f i r s t l e t t e r I got I found r e a l l y o f f e n s i v e . W e l l i t was l i k e Dear P . thanks f o r c a r i n g f o r whatever . The k idneys were t r a n s p l a n t e d a t . . . , one k idney went here and was peeing x amount of ccs per hour and one k idney went here and the h e a r t went h e r e . . . a n d I thought GIVE ME A BREAK but I got a l e t t e r j u s t r e c e n t l y from them which i s s t i l l very s i m i l a r but i t was much more humane. Less of a p a r t s department l e t t e r . I'm s t i l l not sure how I f e e l about those l e t t e r s but that one I found a l o t l e s s o f f e n s i v e than the o r i g i n a l . ICU Nurses and the B r a i n Dead P a t i e n t 100 Along s i m i l a r l i n e s a n o ther nurse i n d i c a t e s she found some of the a c t i o n s of PORT as b e i n g c a l l o u s because they were i n c o n g r u e n t w i t h the f a c t t h a t she knows the p a t i e n t as a p e r s o n . She a l s o i n d i c a t e s a b e l i e f t h a t PORT p r o b a b l y does not mean to be c a l l o u s but s i m p l y sees the s i t u a t i o n from a d i f f e r e n t p e r s p e c t i v e . P. You see they [PORT] do something I t h i n k i s very c a l l o u s and I don't t h i n k you know or they f e e l i t ' s c a l l o u s . They p r o b a b l y mean i t i n the n i c e s t way. Every time they come and get a p a t i e n t they b r i n g a bag of c o o k i e s . Now they mean i t i n the NICEST WAY but you know a bag of c o o k i e s doesn't cut i t . You know what I mean? They would be b e t t e r j u s t to come i n and p i c k up, a t l e a s t t h i s i s my own p e r s o n a l o p i n i o n I can't speak f o r everybody e l s e . They would do b e t t e r to come i n and p i c k up the p a t i e n t and go o f f to the OR and do t h e i r t h i n g and not drop o f f a bag of c h o c o l a t e f i n g e r s or go around and see t h a t everybody has PORT b u t t o n s , you know...They made a C h r i s t m a s c a r d and put organs on i t you know. I und e r s t a n d t h a t they a re f o r l i f e . I r e a l l y DO. BUT from our p e r s p e c t i v e we knew the person t e c h n i c a l l y about as much as we can know about them and i t j u s t seems c a l l o u s . The nurse and her n u r s i n g c o l l e a g u e s . To a l e s s e r e x t e n t the p a r t i c i p a n t s a l s o e x p e r i e n c e i n t e r p e r s o n a l d i s s o n a n c e w i t h t h e i r n u r s i n g c o l l e a g u e s . I n these s i t u a t i o n s t h e i r c o l l e a g u e s g e n e r a l l y do not meet t h e i r e x p e c t a t i o n s w i t h r e g a r d to the s t a n d a r d of n u r s i n g c a r e f o r the b r a i n dead p a t i e n t . One p a r t i c i p a n t i n d i c a t e s t h a t when nu r s e s do not t a l k to the p a t i e n t or t a l k over the p a t i e n t she i s t r o u b l e d . P. I t a l k to them s t i l l even though they a re b r a i n dead, I t h i n k t h a t ' s a way t h a t I d e a l w i t h i t m y s e l f . A l o t of my co-workers don't and i t s o r t of b o t h e r s me a l i t t l e b i t . I - I know t h a t t h e i r f u n c t i o n i s gone but I j u s t keep t h i n k i n g t h a t i f they can r e m o t e l y hear ICU Nurses and the B r a i n Dead P a t i e n t 101 anything f o r some reason and we don't know i t . Then I think that they would r a t h e r know what was going on and we are going to turn them or they're going to experience a needle poke i n t h e i r arm or something. Most of the time I w i l l do t h a t . P. When they t o t a l l y ignore the person. They t a l k over the person: "Do you want to meet f o r lunch next week?" I s t i l l f e e l there should be a sense of p r o f e s s i o n a l i s m at the bedside even though t h i s p a t i e n t i s b r a i n dead and can not hear you. Does not acknowledge your presence. I think we s t i l l have to remember our purpose there i n that i t i s not a complete s o c i a l time. In a d d i t i o n , the d e p e r s o n a l i z a t i o n of the p a t i e n t or not t r e a t i n g the p a t i e n t with r e s p e c t r e s u l t s i n dissonance f o r t h i s same p a r t i c i p a n t . P. We have had d i f f e r e n t d i s c u s s i o n s about t h i s that some people r e f e r to i t [the b r a i n dead p a t i e n t ] as here i s t h i s c a s i n g t h a t ' s h o l d i n g the organs and there's nothing e l s e i n th e r e . I t ' s j u s t b a s i c a l l y organs that you're l o o k i n g a f t e r . I don't know i f I go as f a r . J u s t t h i n k i n g that perhaps t h e i r s o u l has l e f t i f there i s such a thin g and or I s t i l l f e e l l i k e I am nursing a person. I don't f e e l l i k e I am nur s i n g two kidney's and a heart and lung and a p a i r of corneas and maybe some long bones. I don't think i n those terms. R. So i t ' s important f o r you to i d e n t i f y the b r a i n dead as s t i l l being a person then? P. I f i n d i t i s . I um i t ' s one of my b i g things i s when we have a p a t i e n t that has died and they are prepared to go downstairs to the morgue I r e a l l y HATE IT when we are t r a n s f e r r i n g a p a t i e n t from a bed onto the s t r e t c h e r that goes downstairs and whoever i s p u l l i n g the head over they l e t the head bang down on the t r a n s p o r t bed. I t ' s something that r e a l l y bothers me and i t ' s not because I f e e l that person can f e e l or that i t might hurt t h e i r head or anything. I t ' s a l i t t l e b i t of d i s r e s p e c t i n my view that I s t i l l f e e l that we owe that person no matter who they are I don't care i f they grow up and l i v e on i n the a l l e y s somewhere or whatever but I f e e l that we s t i l l have to respec t that person as having BEING, a human being or ICU Nurses and the Brain Dead Patient 102 IS a human being and that kind of thing r e a l l y bothers me. Another participant gives as an example of interpersonal dissonance among nursing colleagues a case involving opposing views towards obtaining organs from brain dead patients. P. I'm thinking in par t i c u l a r we had a young g i r l and I can't remember her age but she was either late teens early twenties. And I think she was a MVA. And she went brain dead. And the family or the majority of the family wanted her to be an organ donor but her mother didn't. And that's her mother's righ t , I f e e l . And my feel i n g and i t ' s only my personal opinion but I f e e l that i f there i s one dissenter in the family you should leave well enough alone because some people can not tolerate the thought of their love one being you know hacked into pieces, r i g h t . Well this mother couldn't r e a l l y not get through her feelings but the family the pressure started with the family and they convinced her and I use "convince" very reservedly, they convinced her to allow this to happen. But i t was r e a l l y coercion, you know. And that's wrong. That i s r e a l l y wrong because that mother has to l i v e many more years, you know with her memories and i f her memory i s marred by the fact that her daughter was cut in some manner that was not suitable to her a b i l i t y to cope with that you've l e f t her in some kind of a h e l l of a limbo. And I can remember i t caused a l o t of dissention amongst us. R. Your unit staff? P. Yeah because there was some of us who sort of f e l t l i k e I do, i f mother objected end of story. And then there was the other end of the continuum that said: "Doesn't matter. She'll get over i t . " I say who knows and so thank goodness what happened i n the end was a l l of the pathologist were away on a big convention out of the c i t y and they couldn't come back u n t i l Monday or Tuesday and i t was a coroners case so the pathologist was needed to be there. Ok, so there wasn't one available. So when the family, this was l i k e a Friday, when they heard about i t and they were delayed, they would be delayed 36 to 48 hours, they got r e a l l y angry and said forget it...because they didn't think that the way was appropriate, which was f a i r . But I thought at ICU Nurses and the Brain Dead Patient 103 least it took the burden off the mom because she was really pushed hard...So I can remember the conversation after when she was let go and I can remember saying well that was good for the mora cause it sort of took the pressure off and some people were really angry. R. Because? P. The organs were wasted quote unquote. But if that's what it takes, that's what it takes. Though this participant feels the mother was being coerced by other family members, she also feels that these same family members were unduly influenced by the publicity surrounding transplantation. These views are described on page 98. In addition, she indicates that the split in the family regarding transplantation and the eventual outcome where no organs were removed created dissention amongst the nursing staff. This interpersonal dissonance is related to the differing personal values and beliefs of the nurses. Whereas, this nurse is "not as gung ho for PORT" (page 98), one of her nursing colleagues feels that with donation "...you see an end result to taking care of a patient" (page 54). This colleague (page 54) reveals how emotionally drained she felt when organs were not retrieved from this young girl. Personal Distress The presence of personal or interpersonal dissonance produces subjective tension which is expressed as a variety of emotions. Some of the terms the participants used to ICU Nurses and the B r a i n Dead P a t i e n t 104 d e s c r i b e t h e i r f e e l i n g s are f r u s t r a t e d , f e e l i n g r o t t e n , being very drained, f e e l i n g saddened, being " p i s s e d o f f " , being annoyed, and being a f r a i d . One p a r t i c i p a n t experienced anger which i s d i r e c t e d at the b r a i n dead p a t i e n t . P. They were j u s t young and the way they die i t ' s u s u a l l y a c c i d e n t a l . . . r i d i n g a motorcycle 100 km a hour i n heavy t r a f f i c when you h i t something t h a t ' s a v o i d a b l e . And that makes me angry...and that makes me want to go out there and shake them a l l . . . t h e young guys. I t seems l i k e such a waste. The experience of c a r i n g f o r the b r a i n dead p a t i e n t and h i s f a m i l y i s d e s c r i b e d i n terms such as g r u e l l i n g , e m o t i o n a l l y d r a i n i n g , p h y s i c a l l y demanding, g h a s t l y , scary, hard, d i f f i c u l t , and j u s t h o r r i b l e . These per s o n a l d i s c o m f o r t s r e s u l t i n a need to reduce the amount of personal and i n t e r p e r s o n a l dissonance which i s present. The p a r t i c i p a n t s use d i s t a n c i n g and/or the d e s i g n a t i o n of another as the t a r g e t of t h e i r n u r s i n g care i n an attempt to r e s o l v e the dissonance they are e x p e r i e n c i n g . The f o l l o w i n g s e c t i o n s w i l l review these coping s t r a t e g i e s from the p e r s p e c t i v e of the p a r t i c i p a n t s . D i s t a n c i n g D i s t a n c i n g from the p a t i e n t or i n some i n s t a n c e s the f a m i l y i s a prominent f e a t u r e of the t r a n s c r i p t i o n s . Why d i s t a n c i n g occurs and how i t occurs w i l l be addressed. ICU Nurses and the B r a i n Dead P a t i e n t 105 R a t i o n a l e f o r d i s t a n c i n g . The p a r t i c i p a n t s i n d i c a t e t h a t they d i s t a n c e themselves from the p a t i e n t f o r t h r e e r e a s o n s . The f i r s t i s to a v o i d t a k i n g t h e i r work home w i t h them. The second i s to c o n t i n u e to work i n the i n t e n s i v e c a r e u n i t and the t h i r d i s to p r o t e c t themselves e m o t i o n a l l y . The f o l l o w i n g e x c e r p t s h i g h l i g h t each of these t h r e e r a t i o n a l e s f o r d i s t a n c i n g . 1. P r o t e c t i o n of home l i f e : R. I s i t i m p o r t a n t to detach y o u r s e l f from the s i t u a t i o n ? P. To a c e r t a i n e x t e n t because you do see a l o t of i t and i t i s n ' t j u s t the b r a i n dead p a t i e n t s . . . i t ' s a l l k i n d s of s i t u a t i o n s and i f you get too i n v o l v e d w i t h i t you can't go home...carry on a l i f e a t home i f you're expending y o u r s e l f a t work. P. Yes because I don't l i k e t a k i n g my work home w i t h me...But as I s a i d most of the time I t u r n m y s e l f r i g h t o f f from i t and j u s t d e a l w i t h what I have to and go home and t o t a l l y f o r g e t about i t . 2. To c o n t i n u e to f u n c t i o n i n the i n t e n s i v e c a r e u n i t : P. But then you can ' t r e a l l y d w e l l on them [ t h e b r a i n dead p a t i e n t s ] because then you w i l l you won't be a b l e to do your work f i n e you know. So ray s o r t of thought i s w e l l i t happened I ca n ' t do a n y t h i n g about i t . A l l I can do now i s make i t e a s i e r f o r the f a m i l y or whoever i s l e f t b e h i n d . P. I t h i n k w i t h a b r a i n dead p a t i e n t you s o r t of have to s w i t c h your f e e l i n g s o f f f o r both cases whether t h e y ' r e g o i n g to be a donor or n o t . . . I don't t h i n k t h a t I g i v e any more of myself e m o t i o n a l l y I t h i n k i t j u s t g e t s me i n t o a c t i o n where I have to take c a r e of t h i s p a t i e n t so they can take organs. ICU Nurses and the B r a i n Dead P a t i e n t 106 P . When I f i r s t s t a r t e d i n there I used to l i k e to go f o r the f u l l set [of c a r i n g f o r the b r a i n dead p e r s o n ] . I d o n ' t any more because I s o r t of come to the wisdom that i t i s too hard on you, the person [ b r a i n dead p a t i e n t ] f o r four days of do ing t h a t . I t ' s very t i r i n g because you i n v e s t a c e r t a i n amount of energy i n t o t h i s you know and i f you want to l a s t at i t you have to d i sengage . You have to be ab le to s tep back and ga in p e r s p e c t i v e cause you have to remember that i t i s not your p a i n . I t i s t h e i r [ the f a m i l y ' s ] p a i n and y o u ' r e h e l p i n g them work through t h e i r p a i n and you c a n ' t take t h e i r p a i n on and i f you take t h e i r p a i n on y o u ' r e not h e l p i n g them. I t h i n k when I was f i r s t i n there I d i d n ' t unders tand the d i f f e r e n c e . And maybe I was meeting my own needs then I d o n ' t know I h a v e n ' t f i g u r e d tha t o u t . A l l I know i s that I'm b e t t e r at what I do i f I j u s t do i t f o r a s h o r t p e r i o d of time which i s f o r us i s two days and then disengage because i f you get too i n v o l v e d y o u ' r e of no v a l u e . 3 . P r o t e c t i o n of one 's s e l f : P . I t r y to detach myse l f from the s i t u a t i o n so to speak to a c e r t a i n extent which i s my cop ing mechanism wi th working wi th these people [the b r a i n dead p a t i e n t ] P . You go home and y o u ' r e ab le to shut i t o f f which I t h i n k you have to be ab le t o . . . y o u have to be ab le to t o t a l l y shut o f f what happens h e r e . . . j u s t f o r y o u r s e l f f o r your p e r s o n a l you know e m o t i o n s . . . You have to s tep back and you d o n ' t become i n v o l v e d . You d o n ' t become i n v o l v e d on an emot iona l l e v e l and I t h i n k there probab ly i s a p a r t of us i n a l l of us that keep o u r s e l v e s s l i g h t l y de tached . And i t ' s s a f e s t . I t r e a l l y does . I d o n ' t t h i n k we c o u l d l a s t long at a l l i f we became so e m o t i o n a l l y i n v o l v e d wi th every p a t i e n t and every f a m i l y . I j u s t d o n ' t t h i n k that happens. How p a r t i c i p a n t s d e s c r i b e the process of d i s t a n c i n g . The p a r t i c i p a n t s d i s t a n c e themselves by e i t h e r d e p e r s o n a l i z a t i o n of the p a t i e n t or d e t a c h i n g themselves ICU Nurses and the B r a i n Dead P a t i e n t 107 e m o t i o n a l l y from the p a t i e n t . The next two a c c o u n t s are examples of the d e p e r s o n a l i z a t i o n t h a t o c c u r s . P. I t ' s j u s t a r e c e p t a c l e l y i n g t h e r e . A c o n t a i n e r . . . I've a l r e a d y d i s t a n c e d m y s e l f a t t h a t p o i n t t h a t they become an organ donor. So i t ' s j u s t an academic mass t h a t ' s going to the OR then. P. I j u s t most of the time I c l o s e m y s e l f o f f from i t . . . F r o m the i t bei n g a p e r s o n . I t h i n k i t ' s a n o t h i n g . I t ' s j u s t a b o d y . . . i t ' s not f u n c t i o n i n g we're doi n g a l l the work f o r i t . . . N o I don't t h i n k of i t as a n y t h i n g . Except f o r something t h a t I am m a i n t a i n i n g ah something l i k e a board or whatever. Other p a r t i c i p a n t s d e t a c h themselves e m o t i o n a l l y by becoming more c l i n i c a l and by r e c o g n i z i n g a l l t h a t can be done has been done and t h a t n o t h i n g more can be done. P. I put my emotions a s i d e I know t h a t . . . I t h i n k t h a t i s the o n l y way t h a t you do d e a l w i t h i t i s p u t t i n g your emotions a s i d e to a l a r g e p a r t . L i k e l o o k i n g a t i t more c l i n i c a l l y than e m o t i o n a l l y . P. I t r y to a c e r t a i n e x t e n t um detach m y s e l f to a p o i n t where I want to be s u p p o r t i v e f o r the f a m i l y but t h e r e i s a f i n e l i n e of perhaps of g e t t i n g i n v o l v e d and s t a y i n g on the o t h e r s i d e w i t h o u t b u r s t i n g i n t o t e a r s a t the b e d s i d e which you f e e l l i k e d o i n g f r e q u e n t l y . S a v i n g t h a t time f o r y o u r s e l f i n the bathroom or i n the changing room w i t h o u t a p p e a r i n g to be c o l d to the f a m i l y because t h a t might be your c o p i n g mechanism and t h a t ' s the way t h a t you detac h y o u r s e l f . I detac h m y s e l f w i t h t h i n k i n g t h a t we have done e v e r y t h i n g we can and I get very b a s i c about the whole t h i n g and t h a t t h e r e i s n o t h i n g e l s e t h a t we can do. I f the p a t i e n t i s a p o t e n t i a l donor we are go i n g to be h e l p i n g someone e l s e and t h a t ' s t h a t . I f e v e r y t h i n g i s done f o r the b r a i n dead p a t i e n t and he i s j u s t w a i t i n g to go to the OR then the p r o c e s s of d i s t a n c i n g i s easy. In f a c t some of the p a r t i c i p a n t s ICU N u r s e s and t h e B r a i n Dead P a t i e n t 108 i n d i c a t e i f a n y t h i n g t h e y have d i f f i c u l t i e s i d e n t i f y i n g w i t h the p a t i e n t . P. I f I come on s h i f t and I'm g e t t i n g a p a t i e n t r e a d y f o r t h e OR and I have n e v e r s e e n h e r b e f o r e . . . y o u f e e l v e r y d i s t a n t and i t i s a l m o s t l i k e t h a t p e r s o n i s n ' t even r e a l . You d o n ' t t h i n k o f them as b e i n g a l i v e anymore. You d o n ' t have t o do you r r o u t i n e a s s e s s m e n t . You d o n ' t have t o you do n ' t have t o do a l l s o r t s o f t h i n g s t h a t you would w i t h a p a t i e n t who i s a l i v e . And o f t e n t i m e s t h e f a m i l y has s a i d t h e i r f i n a l good-byes and you n e v e r see them anyways... and I f i n d i t h a r d t o f e e l a n y t h i n g f o r t h a t p e r s o n . Where you h a v e n ' t met the f a m i l y and you walk i n and you know you r p a t i e n t i s i m m i n e n t l y g o i n g to be g o i n g t o t h e OR t h a t n i g h t . . . I mean i n some s e n s e s i n some ways i t ' s e a s i e r [ t h e c a r e o f t h e b r a i n dead p a t i e n t ] b e c a u s e you d o n ' t have t o e x p l a i n a n y t h i n g t o the p a t i e n t . You d o n ' t have t o p r e p a r e him f o r a n y t h i n g . You d o n ' t have t o s e d a t e him to keep him on t h e v e n t i l a t o r . You d o n ' t have t o . You can do a l l y o u r t h i n g s and r u n a r o u n d and t h a t p a t i e n t d o e s n ' t need a n y t h i n g o f you. P. B e c a u s e sometimes you can come on and have a b r a i n dead w i t h e v e r y t h i n g done. The time o f d e a t h i s t h e r e . The f a m i l y has been i n and s a i d good-bye and you d o n ' t see t h e f a m i l y a g a i n . So y o u ' r e j u s t l o o k i n g a f t e r t h e body and t h a t ' s l i k e t h a t ' s t h e f i r s t t h i n g I want t o know b e c a u s e I want t o know I g u e s s how much e m o t i o n a l trauma i t ' s g o i n g t o be. B e c a u s e i f e v e r y t h i n g i s done and t a k e n c a r e o f and t h e f a m i l y has s a i d good-bye i t ' s r e a l l y e a s y t o go t o t h e b e d s i d e and and do a l l t h e t h i n g s you have t o do u n t i l t h e p a t i e n t goes t o t h e OR. But t h e n i f you've g o t t h e f a m i l y t o d e a l w i t h t h e n you do s h a r e i n t h e i r g r i e f and i t ' s a s h a r e d t h i n g more s o m e t h i n g t h a t . . . I f e e l t h a t I'm f e e l i n g i t b e c a u s e I j u s t i m a g i n e s o r t o f what i t would be l i k e f o r me...But i f e v e r y t h i n g you know t h e f a m i l y has s a i d good-bye and t h e y ' v e a c c e p t e d t h e t i m e o f d e a t h as 9 o ' c l o c k and he i s j u s t w a i t i n g t o go t o the OR t h e n yeah i t ' s easy you d o n ' t have t o t a l k t o t h e p a t i e n t . You j u s t do t h e s t u f f . F o u r p a r t i c i p a n t s i n d i c a t e t h a t t h e a b s e n c e o f f a m i l y members makes d i s t a n c i n g e a s i e r . ICU Nurses and the B r a i n Dead P a t i e n t 109 P. I think because of my development of t r y i n g to become a l i t t l e more d i s t a n t to the s i t u a t i o n . I f i n d i t i s e a s i e r to achieve that i f they're [the f a m i l y ] not at the bedside. They're very upset u s u a l l y and they are c r y i n g and they're very emotional. And you t r y and be su p p o r t i v e as much as you can and sometimes when they are not there i t give s you a l i t t l e b i t of a break as w e l l from being a su p p o r t i v e person and i t allows you to kind of r e l a x a b i t and get your job done. P. I t ' s e a s i e r when they [the b r a i n dead p a t i e n t ] come from a d i s t a n t part of the province or whatever and the f a m i l y doesn't come down and they al r e a d y know that he i s b r a i n dead and that they have consented or they haven't to whatever and they don't come. I t ' s e a s i e r d e a l i n g with that person because you don't know the background. You don't know the f a m i l y . You don't know anything about them except f o r what happened during the ac c i d e n t or how they got that way. P. And sometimes I f i n d that once the f a m i l y leaves and has s a i d t h e i r good-byes I f i n d i t almost hard to r e l a t e to that p a t i e n t anymore because the t i e i s gone. Cause the f a m i l y i s gone...I guess t h a t ' s the other strange t h i n g too i s that you know the f a m i l y ' s gone and that takes away that much more from t h i s body the r e . P. Maybe he's a John Doe of whatever that there are no fa m i l y members so you don't get to know anything about that person of course. You're not going to t r e a t them any d i f f e r e n t but I don't know I think you are more detached because t h i s i s j u s t a person that you don't know anything about. Your care i s n ' t d i f f e r e n t because your care i s your care. But I think i t makes a d i f f e r e n c e . On the other hand the presence of the f a m i l y may make d i s t a n c i n g i m p o s s i b l e as the nurse can r e a d i l y i d e n t i f y with the p a t i e n t . T h i s i s evident i n the f o l l o w i n g two accounts. ICU N u r s e s and t h e B r a i n Dead P a t i e n t 110 P. B e c a u s e I d i d g e t t o know the f a m i l y a l i t t l e b i t . . . k n e w what he was l i k e b e f o r e t h e a c c i d e n t and s t u f f and r e a l i z e d he was a p e r s o n , not j u s t a body l y i n g t h e r e . L i k e a c a d a v e r or w h a t e v e r you want t o c a l l i t t h a t ' s b e i n g f u n c t i o n e d t h r o u g h th e m a c h i n e r y . . . I t ' s i t ' s n o t easy d e a l i n g w i t h b r a i n dead p e o p l e and I f i n d i t l i k e I s a i d more d i f f i c u l t when t h e r e i s f a m i l y a r o u n d b e c a u s e t h e y [ t h e b r a i n dead p a t i e n t s ] came from somewhere e l s e and t h e y ' r e n o t t h e r e by t h e m s e l v e s . T h e r e i s somebody e l s e t o d e a l w i t h b e s i d e s t h e dead p e r s o n . . . I t ' s n o t l i k e h a v i n g some bum t h a t t h e y p i c k e d o f f t h e r o a d somewhere t h a t d o e s n ' t have a f a m i l y . D o e s n ' t have a s o c i a l b a c k g r o u n d t h a t y o u ' r e g o i n g t o be aware o f . Those a r e e a s y t o d e a l w i t h when you d o n ' t know the b a c k g r o u n d . The more you know the h a r d e r i t i s . Or t h e more I know. P. I t ' s r e a l l y h a r d t o d e a l w i t h f a m i l i e s i n any s i t u a t i o n . I f i n d i t h a r d to d e a l w i t h them b e c a u s e l i k e I g u e s s i t g i v e s l i f e t o the p a t i e n t . You g e t t o know them a l i t t l e b i t b e t t e r t h r o u g h t h e i r f a m i l y . You see t h a t t h i s p a t i e n t i s a v e r y v i t a l p a r t i n somebody e l s e ' s l i f e . And I t h i n k i t i s so h a r d t o d e a l w i t h b e c a u s e i t ' s so much e a s i e r t o g e t e m o t i o n a l l y i n v o l v e d when you g e t to know t h e f a m i l y w e l l and maybe t h a t ' s why I f i n d i t a l o t more d i f f i c u l t when you a r e t a k i n g c a r e o f a p a t i e n t . . . i t i s so much e a s i e r to d e a l w i t h when you d o n ' t know them as a p e r s o n . At t i m e s d i s t a n c i n g must o c c u r between the n u r s e and t h e f a m i l y . P. I had had him f o r the t h r e e p r e v i o u s s h i f t s and I came on n i g h t s and h i s f a m i l y had s a i d good-bye and I know t h a t I f e l t r e l i e v e d t h a t I wasn't g o i n g t o have to see them. Cause i t was a l m o s t l i k e I had done what I c o u l d f o r them and I had t a k e n them t h r o u g h t h i s p e r i o d where he became b r a i n dead but I d i d n ' t r e a l l y want t o see them a g a i n . Became we had s o r t o f s a i d our g o o d - b y e s . And t h e f a c t t h a t he was dead now i n my e y e s i t was e a s i e r t h a t t h e f a m i l y wasn't t h e r e . ICU N u r s e s and the B r a i n Dead P a t i e n t 111 When d i s t a n c i n g o c c u r s . D i s t a n c i n g may o c c u r a t any time d u r i n g t h e n u r s e ' s i n v o l v e m e n t w i t h t h e p a t i e n t . F o r some i t i s p r e s e n t f r o m the moment t h e y a r e a s s i g n e d t o t h e p a t i e n t . F o r o t h e r s i t o c c u r s when b r a i n d e a t h has been d e c l a r e d or when c o n s e n t i s g i v e n f o r o r g a n d o n a t i o n . P. I t h i n k t h e o n l y t i m e t h a t my f e e l i n g change i s a f t e r t h e y ' r e d e c l a r e d b r a i n dead and I t h i n k t h a t i t ' s a t t h a t t i m e t h a t I am t r y i n g t o p u l l back a l i t t l e . P. Maybe t h e r e i s a p a r t o f me t h a t s h u t s o f f . You know I j u s t k i n d o f remove m y s e l f . T h e r e i s no s e n s e i n g e t t i n g worked up a b o u t t h i s . You know l i k e you j u s t a c c e p t i t and I mean n o t a g r e e w i t h i t . . . S o I gu e s s f o r me I j u s t s o r t of t r y and f l o w w i t h i t . I'm not g o i n g t o be a b l e to do a n y t h i n g about i t and maybe t h e r e i s a p a r t o f me t h a t k i n d o f s h u t s o f f and I w i l l do what I have t o to t a k e c a r e of t h a t p a t i e n t u n t i l t h e y go. But I g u e s s my h e a r t and s o u l i s n ' t i n t o i t . . . I c e r t a i n l y c l o s e o f f my e m o t i o n s t o w a r d s t h a t p e r s o n . I t h i n k t h e r e i s a d i s a s s o c i a t i o n t h a t you have to make. And I would say t h a t i s e x a c t l y i t . I go t h r o u g h the m o t i o n s o f t a k i n g c a r e o f t h e p a t i e n t but I'm c e r t a i n l y n ot i n t o i t . P. T h e r e i s a d e f i n i t e s w i t c h . . . i t ' s l i k e y o u ' r e s w i t c h i n g t o a n o t h e r g e a r and i t ' s a l m o s t l i k e an a c a d e m i c t h i n g t h e n . I t ' s n o t i t ' s n o t I d o n ' t t r e a t them l i k e a p e r s o n t h e n so much. I t ' s more l i k e a t e x t b o o k t y p e t h i n g . I keep t h e e l e c t r o l y t e s r i g h t . Keep t h e NUMBERS r i g h t . . . b u t I can I know t h a t I s w i t c h i n t o t h a t g e a r and s a y : "Ok now t h i s i s t e x t b o o k . T h i s i s a c a d e m i c . The numbers have g o t t o be r i g h t . I c a n ' t l e t t h e b l o o d p r e s s u r e go below s u c h and s u c h . I've got t o keep up w i t h t h e o u t p u t and ah t r y n o t t o use any meds or w h a t e v e r and keep t h i s body i n prime c o n d i t i o n . . . you s o r t o f t r a i n b o t h your e n e r g i e s and your t h o u g h t t h a t . . . i t ' s s t r i c t l y an a c a d e m i c e x e r c i s e a t t h a t p o i n t . And as f a r as p e r s o n h o o d o r p e r s o n I t h i n k v e r y I d o n ' t t h i n k a l o n g t h o s e l i n e s when I am t a k i n g c a r e o f a donor p a t i e n t . L i k e whereas i f he i s ICU N u r s e s and t h e B r a i n Dead P a t i e n t 112 n o t a d o n o r . p a t i e n t t h e n I am more aware o f t h e p a t i e n t b e i n g . . . t h e body h a v i n g once h e l d a p a t i e n t you know l i k e a l i f e and t h e r e f o r e I t r e a t them maybe more r e s p e c t f u l l y . R. I f t h e y ' r e n o t an o r g a n d o n o r ? P. YEAH... when t h e y ' r e an o r g a n donor i t ' s become an a c a d e m i c e x e r c i s e and you s o r t o f j u s t s w i t c h o v e r t o t h a t mode. D e s i g n a t i n g A n o t h e r as the T a r g e t o f N u r s i n g C a r e In most i n s t a n c e s the r e c i p i e n t or t a r g e t o f n u r s i n g c a r e i s t h e p a t i e n t t o whom t h e n u r s e i s a s s i g n e d . However when the a s s i g n e d p a t i e n t i s b r a i n dead t h e n d i s s o n a n c e on a p e r s o n a l or i n t e r p e r s o n a l l e v e l may o c c u r . The n u r s e may t h e n d e s i g n a t e e i t h e r the p a t i e n t ' s f a m i l y , t h e t r a n s p l a n t r e c i p i e n t or even h e r own s e l f as t h e r e a s o n f o r h e r p r o v i d i n g c a r e to a b r a i n dead p a t i e n t . F a m i l y . Many o f t h e p a r t i c i p a n t s i n d i c a t e t h a t t h e n u r s i n g c a r e o f t h e b r a i n dead p a t i e n t i s r e a l l y c a r e o f t h e f a m i l y . The f a m i l y i s t h e f u l c r u m a r o u n d w h i c h n u r s i n g r e v o l v e s and t h e f a m i l y becomes t h e r a t i o n a l e f o r t h e p r o v i s i o n o f b a s i c c a r e t o t h e dead p a t i e n t . The f o l l o w i n g a c c o u n t s p r o v i d e e v i d e n c e t h a t t h e f a m i l y i s t h e t a r g e t o f n u r s i n g c a r e . P. He [ t h e b r a i n dead p a t i e n t ] d o e s n ' t know. He c a n ' t p e r c e i v e a n y t h i n g . He i s l i k e b r a i n dead you know. So you j u s t do i t f o r the p e o p l e t h a t can f e e l t h a t t i m e and most o f them t h e f a m i l y I g u e s s . . . Y e a h I t h i n k more when y o u ' r e n u r s i n g a p a t i e n t , a b r a i n dead p a t i e n t , y o u ' r e r e a l l y n u r s i n g more I t h i n k maybe t h e f a m i l y t h e n the p a t i e n t . E x c e p t the p a t i e n t u s u a l l y t h e c a r e i s n ot v e r y h a r d on you. Yo u ' r e not d o i n g a l o t o f ICU N u r s e s and t h e B r a i n Dead P a t i e n t 113 busy t h i n g s w i t h th e p a t i e n t so y o u ' r e m a i n l y d e a l i n g w i t h the f a m i l y . P. I f i n d a l s o t h a t you a r e by no means n o t o n l y n u r s i n g t h a t p a t i e n t but you a r e n u r s i n g t h e f a m i l y p r o b a b l y more t h a n the p a t i e n t i n a l o t o f c a s e s d e p e n d i n g on how t h e y a r e c o p i n g w i t h the s i t u a t i o n . P. J u s t p r e p a r i n g t h e f a m i l y j u s t p r e p a r i n g t h e f a m i l y f o r t h e d e a t h . B a s i c a l l y t h e n u r s i n g i s j u s t b a s i c n u r s i n g c a r e you know t u r n s or keep the p a t i e n t c l e a n and c o m f o r t a b l e . The main p a r t t h e n i s t h e g r i e v i n g f a m i l y . . . I mean i t ' s v e r y sad but I'm n o t r e a l l y I s u p p o s e my c o n c e r n when the p a t i e n t i s a t t h a t s t a g e t h e y d o n ' t know. I'm more c o n c e r n p r o b a b l y a b o u t o u t s i d e t h i n g s l i k e the f a m i l y w a i t i n g i n t h e w a i t i n g room c a u s e t h a t ' s a l o t t o u g h e r to d e a l w i t h t h e n a dead body who's not h e r e . P. The o t h e r t h i n g i s f o r r e l a t i v e s t h a t I c a n ' t do a n y t h i n g r e a l l y f o r t h e p a t i e n t anymore but i f t h e y s e e t h e i r l o v e d one w i t h t h e i r h a i r a l l n i c e l o o k i n g , i n a c o m f o r t a b l e p o s i t i o n and you know c l e a n and what n o t t h e n I've done s o m e t h i n g f o r them. R. So c a r i n g f o r t h e b r a i n dead p a t i e n t i s a l s o c a r i n g f o r t h e i r f a m i l y ? P. T h a t ' s s o r t o f a l l you've g o t l e f t sometimes l i k e you f e e l t h a t you s t i l l want t o do s o m e t h i n g more. And t h a t ' s a l l you've got l e f t . The f o l l o w i n g f i v e a c c o u n t s i n d i c a t e t h a t c a r e p r o v i d e d t h e p a t i e n t i s f o r t h e b e n e f i t o f the f a m i l y . P. B e c a u s e what I f o u n d i s I ' l l g u s s y them a l l up. O f t e n shampoo t h e i r h a i r , f r e s h bed, put some a f t e r -s h a v e on i f i t ' s a guy, a n t i p e r s p i r a n t w i t h some s m e l l i n i t , w h a t e v e r and t h a t seems t o make the f a m i l y f e e l b e t t e r . I mean i t d o e s n ' t h e l p you know i n t h e o v e r a l l scheme o f t h i n g s . But t h e f a m i l y seems t o f e e l b e t t e r b e c a u s e I t h i n k t h e y t h i n k we c a r e or we w o u l d n ' t b o t h e r . ICU Nurses and the B r a i n Dead P a t i e n t 114 P. I t ' s weighing the s i t u a t i o n . I f the f a m i l y i s very concerned about them [the b r a i n dead p a t i e n t ] being comfortable at a l l times then perhaps f o r the f a m i l y I might turn the p a t i e n t but I would l i k e to make that p a t i e n t as comfortable as p o s s i b l e . . . I would comb t h e i r h a i r because i f the f a m i l y came i n I'm sure that they would want them to look c l e a n . P. But I guess I think too of the f a m i l y t h a t ' s coming i n . I f the f a m i l y i s s t i l l coming i n l o o k i n g at that p a t i e n t I guess I t r y and think how they would f e e l too. How I would f e e l i f I was i n that s i t u a t i o n and that means a l o t to people they don't understand a l l the medical aspect but they sure know i f t h e i r love one looks n i c e . P. Quite o f t e n I don't think they r e a l l y r e a l i z e the extent of what you're doing and to me sometimes they j u s t need to t a l k . Yeah so you i f t a l k while you're doing things you know u s u a l l y they f e e l b e t t e r i f you're dong mouth care or whatever and they th i n k you're t a k i n g care of the p a t i e n t and making them comfortable even i f they are b r a i n dead. I thin k i t makes them f e e l b e t t e r i n that j u s t because they're b r a i n dead there i s nothing you can do f o r them and j u s t don't shove them i n t o a corner. P. Again i t ' s a b i t of a f r u s t r a t i o n t h i n g [doing comfort measures on a b r a i n dead p a t i e n t ] and o f t e n i n those times we do i t f o r the f a m i l y so the p a t i e n t looks good or that they f e e l that we are s t i l l t r e a t i n g them...It [ n u r s i n g care] doesn't make any d i f f e r e n c e to the p a t i e n t . I t may make some d i f f e r e n c e to the f a m i l y . They're having a hard time d e a l i n g with i t and i t sometimes makes a d i f f e r e n c e to you i n that you are doing a l i t t l e b i t of something even though you can't see a p o i n t . By r e f o c u s i n g nursing care on the f a m i l y the nurse i s able to reduce dissonance and to d e r i v e personal b e n e f i t s . ICU Nurses and the B r a i n Dead P a t i e n t 115 P. I thin k maybe i f I can i n any way make the s i t u a t i o n a l i t t l e l e s s p a i n f u l f o r f a m i l i e s . . . I t h i n k so many people have so many t e r r i b l e experiences i n h o s p i t a l s and t h a t ' s something that they a s s o c i a t e with a b s o l u t e l y u n t i l the day they d i e . I f we can i n anyway make ease the pain at a l l then I would hope t h a t ' s what we could do or perhaps what I could d o . . . i f they remember not- necessary you know they don't r e a l l y have to remember that the nurse P. or anything but j u s t t h a t : "There was t h i s one nurse or there was t h i s group of nurses and they j u s t e x p l a i n e d e v e r y t h i n g so thoroughly so that we know what was happening and we knew that there was a b s o l u t e l y nothing e l s e that could be done" and that they f e l t very informed and i f that could at a l l help them then i t ' s a l l worth i t . . . I t h i n k s i n c e you and I have been d i s c u s s i n g t h i s my main focus has always been the f a m i l i e s and i t r e a l l y i s the main focus f o r me. P. I t ' s [ n o t i f y i n g r e l a t i v e s when b r a i n dead p a t i e n t goes to the op e r a t i n g room] s t r i c t l y f o r them. L i k e i t ' s something I'm able to do f o r the r e l a t i v e s and i t helps me. I t i s something p o s i t i v e that I can do f o r the... because I am doing i t f o r them you know l i k e because I think i t helps them..."Ok now i t r e a l l y i s . He r e a l l y i s gone now." R. So f o r you h e l p i n g the f a m i l y i s a p o s i t i v e aspect of c a r i n g f o r the b r a i n dead p a t i e n t ? P. Yes. Yes because with the b r a i n dead p a t i e n t t h a t ' s not an organ d o n o r . . . l i k e I say that i s a l l I've got l e f t a l m o s t . . . i f you can give something p o s i t i v e to a r e l a t i v e then yeah i t does i t does d i r e c t l y help you too. P. I f i n d the th i n g that make my job e a s i e r i s i f . . . I l i k e to deal with the f a m i l i e s and i f I can somehow make them r e a l i z e that t h e i r love one i s here and the reason that t h i s i s happening i s because of these f a c t o r s that have occurred and that they are i n nothing, no discomfort - s t r e s s i n g that p o i n t seems to help the f a m i l y a l o t . I f e e l I f e e l b e t t e r i f I know the f a m i l y i s d e a l i n g with the s i t u a t i o n reasonably w e l l quote unquote. And by reasonably w e l l I mean not roaming around on the f l o o r i n g r i e f but they're t r y i n g to understand the s i t u a t i o n and grasp onto i t . I f I ICU Nurses and the B r a i n Dead P a t i e n t 116 can make them f e e l a l i t t l e b e t t e r that was then I f e e l b e t t e r . I f I f e e l that they're t o t a l l y d i s t r a u g h t I've been a b s o l u t e l y completely i n e f f e c t u a l i n my nur s i n g care of them then I f e e l l i k e I haven't done a good job. The p a t i e n t may be w e l l looked a f t e r , the p a t i e n t i s w e l l looked a f t e r but i f I can't help the f a m i l y to some extent then I f e e l l i k e I haven't done my complete job. P. But at the same time when you get to know the fa m i l y and i n a way i t ' s r e a l l y sad and i t ' s r e a l l y t r a g i c but you u s u a l l y meet t h e . . . f a m i l y r e a l l y opens up to you and you and you get to meet people and get to know them and that some how takes away l i t t l e b i t about how sad i t i s . R. So knowing the fa m i l y P. I f i n d knowing the f a m i l y helps you get through i t because you are meeting you're meeting people they're at an i n c r e d i b l y awful p o i n t i n t h e i r l i v e s and how you're able to help them through i t . At l e a s t t h a t ' s how I found i t ' s been and I w i l l request to look a f t e r them f o r the whole s t r e t c h . R. And because of being able to help the fam i l y ? P. Being able to help them and you know they reach out so d e s p e r a t e l y f o r something when they are going through t h i s . You know I know a l o t of people the most d i f f i c u l t t h i n g i s when you come on and the p a t i e n t d i e s that i s de c l a r e d b r a i n dead and you haven't met the f a m i l y yet. I t ' s always e a s i e r when you know them and you have been able to e s t a b l i s h a r a p p o r t . P. Well I l i k e being able to help the f a m i l y come to terms with i t . L i k e I get some s a t i s f a c t i o n from that i f I can share i t with them or help a l i t t l e b i t even though i t h u r t s . . . I l i k e d e a l i n g with the f a m i l i e s of the b r a i n dead i n a way. I f I can f e e l l i k e I am he l p i n g them at a l l come to terms with i t . Or j u s t g i v i n g them a l i t t l e b i t of support which sometimes you can see that that helps me...If you have developed a r e a l l y good rapport with the f a m i l y that you would want to stay f o r t h e i r sake as w e l l as yours because you get something out of i t too. ICU Nurses and the B r a i n Dead P a t i e n t 117 R. What i s that that you get out of i t ? P. I guess you get a f e e l i n g of being u s e f u l or of doing some good of a s i t u a t i o n that there i s very l i t t l e from t h e i r p o i n t of view, very l i t t l e good that comes out of i t . They can t a l k to you and they meet you, they know you a l i t t l e b i t . So you j u s t f e e l l i k e you are doing some good f o r them, some s o r t of support. T h e r e f o r e , f o r t h i s p a r t i c i p a n t , and others whether dissonance i s r e s o l v e d depends on whether or not the goal of h e l p i n g the f a m i l y i s achieved. T r a n s p l a n t r e c i p i e n t . By r e f o c u s i n g t h e i r care on the organ r e c i p i e n t the nurses are able to reduce t h e i r dissonance and the personal s t r e s s they encounter when c a r i n g f o r the b r a i n dead p a t i e n t . T h i s i s evidenced i n the f o l l o w i n g account. P. I n i t i a l l y I f e l t a l o t more f r u s t r a t i o n because I d i d n ' t think of the t h i r d person. And t h i n k i n g of the t h i r d i s s o r t of one way I have of coping with l o o k i n g a f t e r somebody that i s b r a i n dead and p u t t i n g a l o t of e f f o r t i n t o something that you f e e l i s a waste of energy you know to some extent. R. So by t h i n k i n g about the t h i r d person now you don't f e e l l i k e you're... P. As q u i t e as f r u s t r a t e d that there seems to be more of a purpose to what I am doing. The d e s i g n a t i o n of the unknown t r a n s p l a n t r e c i p i e n t as the focus of n u r s i n g care a l s o e s t a b l i s h e s a goal f o r the p a r t i c i p a n t ' s n u r s i n g care. T h i s goal which i s to b e n e f i t or give l i f e to an i n d i v i d u a l makes t h e i r nursing care congruent with t h e i r p h i l o s o p h i e s of n u r s i n g . P. Well i f they become an organ donor then t h a t ' s good f o r the r e c i p i e n t because there are so many people out there that r e q u i r e organs. That's a b e n e f i t . ICU Nurses and the B r a i n Dead P a t i e n t 118 R. Does that make i t e a s i e r f o r you to care f o r the b r a i n dead p a t i e n t ? P. Well i t makes i t more of a goal to work towards. R i g h t . P. Because someone e l s e w i l l r e c e i v e those organs you want them to be i n the best shape they can be so you r e a l l y t r y hard to keep the blood pressure p e r f e c t l y normal, the u r i n e output r i g h t where you want i t you know. I t ' s not a f u t i l e e f f o r t to do that because the b e t t e r you can keep the organs the b e t t e r the chance the r e c i p i e n t has. P. I think i t ' s um organ donation i s becoming bigger and bigger and I think that i n terms of that you have to do X amount of care i f you are going to reap the b e n e f i t s i n the end. And i n my mind that i s e t h i c a l l y r i g h t . I f you are going to be h e l p i n g a l i v i n g person f u l f i l l t h e i r l i f e b e t t e r then that i s i s r i g h t now to me that i s e t h i c a l l y r i g h t . Having a goal to work towards helps the nurse to o b t a i n rewards f o r h e r s e l f . Two p a r t i c i p a n t s give evidence to t h i s f a c t . P. And with the one that i s an organ donor there i s a c e r t a i n reward which you get a c e r t a i n p o s i t i v e t h i n g with keeping t h i s academic s i t u a t i o n at i t ' s prime and you can kind of gain some some s a t i s f a c t i o n from that and know i n the long run that i t w i l l you know b e n e f i t somebody. P. I f the p a t i e n t ' s going f o r m u l t i p l e organ donation then I f e e l w e l l maybe we have done a good JOB with t h i s p a r t i c u l a r PATIENT because you know numerous people who are going to b e n e f i t from t h i s . That's when we, I t h i n k , f e e l a l i t t l e b i t b e t t e r . ICU N u r s e s and t h e B r a i n Dead P a t i e n t 119 N u r s e . A few o f the p a r t i c i p a n t s i n d i c a t e t h a t a t t i m e s when t h e y a r e p r o v i d i n g c a r e to t h e b r a i n dead p a t i e n t t h a t t h e y a r e r e a l l y n u r s i n g the n u r s e . D o i n g t h i n g s f o r t h e p a t i e n t makes them f e e l b e t t e r even though i t makes l i t t l e d i f f e r e n c e to t h e p a t i e n t i n t h e o v e r a l l scheme o f t h i n g s . The a c c o u n t s o f f i v e p a r t i c i p a n t s p r o v i d e e v i d e n c e f o r t h i s p o i n t . P. T h i s p a t i e n t i s a dead p a t i e n t and why a r e we d o i n g t h i s ? Sometimes I t h i n k i t i s j u s t f o r our own s e l v e s . P. I mean you a r e more i n t e r e s t e d i n now i f y o u ' r e g o i n g t o t r y and keep o r g a n s t h a t ' s what you f o c u s i s not t h e c o m f o r t measures as much. So you r f o c u s c h a n g e s a l i t t l e b i t t h e r e . I mean you g o t t o do mouth c a r e . I t makes me f e e l b e t t e r but t h a t d o e s n ' t change a n y t h i n g . I t makes me f e e l b e t t e r and I l i k e t h e f a m i l y t o t h i n k t h a t t h e y have a l i t t l e b i t o f d i g n i t y as w e l l . P. I mean as f a r as b a s i c n u r s i n g c a r e i t d o e s n ' t r e a l l y m a t t e r a t t h a t p o i n t whether we t u r n t h e p a t i e n t or b u t i t makes me f e e l b e t t e r u s u a l l y when i t ' s done. P. I g u e s s I a l w a y s do t o my p a t i e n t s you know o r I sometimes I c a l l them I d o n ' t know l i k e a f u n n y name l i k e ' s w e e t i e ' . . . I d o n ' t know maybe i t ' s j u s t t o you b e c a u s e y o u ' r e d e a l i n g w i t h t h a t p a t i e n t i t ' s s o r t l i k e he's my p a t i e n t you know and I'm v e r y when I l o o k a f t e r p a t i e n t s I'm v e r y I d o n ' t know what's t h e word but um l i k e maybe p o s s e s s i v e l i k e t h i s i s my p a t i e n t . T h i s i s my a r e a and I a l w a y s l i k e you know t o keep my a r e a t h e way I want i t and my p a t i e n t l o o k i n g j u s t how I want him and maybe j u s t f o r me I know he c a n ' t h e a r . He c a n ' t f e e l a n y t h i n g . But i t makes me f e e l b e t t e r I g u e s s . ICU Nurses and the B r a i n Dead P a t i e n t 120 P. And perhaps when I'm speaking to them [the b r a i n dead p a t i e n t ] when we're doing that I'm nur s i n g myself not the p a t i e n t . For one p a r t i c i p a n t p r o v i d i n g the p a t i e n t with b a s i c care helps her to remain human. P. I do mouth care, eye ca r e . I turn them. I t a l k to them. I t a l k to them when they're DEAD when I'm g e t t i n g them ready to f o r the morgue. I s t i l l c a l l them Tom, Dick or what ever t h a t ' s j u s t my personal philosophy. R. To t a l k to P. The dead person. You know I f i g u r e the day I stop doing that I have to get out that day because that s o r t of makes me human I t h i n k . One p a r t i c i p a n t i n d i c a t e s that nursing the nurse i s not always p o s s i b l e . For i n s t a n c e , with an organ donor "you're em o t i o n a l l y and p h y s i c a l l y very busy" and the time i s not there to take care of the nurse but with a non organ donor there i s more time so you "can give your a t t e n t i o n to the emotional, e i t h e r your own or the r e l a t i v e s " Summary The e s s e n t i a l s t r u c t u r e of the experience of c a r i n g f o r a b r a i n dead p a t i e n t i s dissonance which i s the c l a s h i n g of c o e x i s t i n g b e l i e f s , p e r c e p t i o n s , values, o p i n i o n s , knowledge and a c t i o n s w i t h i n one's s e l f ( p e r s o n a l dissonance) or between one's s e l f and another ( i n t e r p e r s o n a l d i s s o n a n c e ) . Personal dissonance occurs i n r e l a t i o n to the nurse's philosophy about n u r s i n g , to t r a d i t i o n a l n ursing care a c t i v i t i e s , to the concept of b r a i n death, to organ ICU Nurses and the B r a i n Dead P a t i e n t 121 r e t r i e v a l and t r a n s p l a n t a t i o n , and to p r o f e s s i o n a l r e s p o n s i b i l i t i e s and the nurse's own emotional needs. I n t e r p e r s o n a l dissonance occurs between the nurse and f a m i l i e s , p h y s i c i a n s , the PORT Team and her own nursing c o l l e a g u e s . Both forms of dissonance r e s u l t i n personal d i s t r e s s which the p a r t i c i p a n t s d e s c r i b e using terms such as f r u s t r a t i o n , " p i s s e d o f f " , f e e l i n g r o t t e n and being a f r a i d . The presence of t h i s s u b j e c t i v e t e n s i o n r e s u l t s i n e f f o r t s to reduce the personal and i n t e r p e r s o n a l dissonance. Dissonance r e d u c t i o n i s accomplished by u t i l i z i n g d i s t a n c i n g t a c t i c s and/or d e s i g n a t i n g a t h i r d person as the ta r g e t of nursing care. The former may i n v o l v e d e p e r s o n a l i z a t i o n of the p a t i e n t or emotional detachment. When d e s i g n a t i n g a t h i r d person as the ta r g e t of care, the p a t i e n t no longer i s the reason f o r nur s i n g a c t i v i t i e s . Instead, the p a t i e n t ' s f a m i l y , the unknown t r a n s p l a n t r e c i p i e n t or even the nurse h e r s e l f becomes the r a t i o n a l e f o r p r o v i d i n g c a r e . ICU Nurses and the B r a i n Dead P a t i e n t 122 CHAPTER 5: DISCUSSION OF FINDINGS In t h i s chapter the f i n d i n g s of the r e s e a r c h study which represent the e s s e n t i a l s t r u c t u r e of the experience of p r o v i d i n g care to a b r a i n dead p a t i e n t w i l l be presented i n r e l a t i o n to the p e r t i n e n t l i t e r a t u r e . The d i s c u s s i o n of the f i n d i n g s w i l l f o l l o w the framework which was developed i n Chapter Four. F i r s t , p ersonal and i n t e r p e r s o n a l dissonance w i l l be addressed. Then d i s t a n c i n g and the d e s i g n a t i o n of a t h i r d person as the t a r g e t of n u r s i n g care w i l l be reviewed. Personal Dissonance The concept of personal dissonance as conceived f o r t h i s study i s based on F e s t i n g e r ' s theory of c o g n i t i v e dissonance. F e s t i n g e r (1957) uses the terms consonance and dissonance to d e s c r i b e the r e l a t i o n s h i p between any p a i r of c o g n i t i o n s which could be any knowledge, o p i n i o n , or b e l i e f about the environment, about one's s e l f , or about one's behaviour. I f the p a i r of c o g n i t i o n s ' f i t ' , that i s , one f o l l o w s from the other then the r e l a t i o n between them i s consonant and i n t e r n a l c o n s i s t e n c y e x i s t s w i t h i n the i n d i v i d u a l . On the other hand a dissonant r e l a t i o n s h i p e x i s t s i f the obverse of one c o g n i t i o n would f o l l o w from the other ( F e s t i n g e r , 1957). Four s i t u a t i o n s which may lead to dissonance are: (1) l o g i c a l i n c o n s i s t e n c y , (2) c u l t u r e mores, (3) one c o g n i t i o n being i n c l u d e d i n a more encompassing c o g n i t i o n , and (4) past experience. The p a r t i c i p a n t s ' accounts i n d i c a t e that these four s i t u a t i o n s ICU Nurses and the B r a i n Dead P a t i e n t 123 are a p p l i c a b l e to the d i s c o r d which i s seen with the p r o v i s i o n of care to a b r a i n dead p a t i e n t . For i n s t a n c e , the f o l l o w i n g two accounts i n d i c a t e that l o g i c a l i n c o n s i s t e n c y i s seen to occur when the b r a i n dead i s t r e a t e d as i f he i s a l i v e . P. Cause sometimes you t h i n k that they should be i n the morgue i n s t e a d of being cared f o r the way they are. P. They are s t i l l dead no matter how you look at whether you are going to be a donor or whether they're not. And i f you allow y o u r s e l f to think about that i t ' s kind of creepy to t h i n k that you are t a k i n g care of t h i s dead p a t i e n t . . . The accounts of a number of p a r t i c i p a n t s i n d i c a t e that dissonance a l s o r e s u l t s as ' c u l t u r e mores' are not c l e a r l y o u t l i n e d f o r the b r a i n dead. P. The p a t i e n t would be b r a i n dead when you come on and you could ask: "Do you do anything?" I mean they're b r a i n dead, they don't know what you're doing or what you're not doing. P. And I a l s o don't know how to t r e a t the person...the donor or the p o t e n t i a l donor or the b r a i n dead person. F e s t i n g e r ' s t h i r d s i t u a t i o n of a c o g n i t i o n being contained w i t h i n a more encompassing c o g n i t i o n i s seen i n r e l a t i o n to the dissonance the p a r t i c i p a n t s experience when they are unable to r e c o n c i l e t h e i r personal philosophy of what nursing i s with the p r o v i s i o n of care to a b r a i n dead p a t i e n t . A l l p a r t i c i p a n t s , with the exception of one, b e l i e v e that nursing i n v o l v e s c a r i n g f o r l i v i n g i n d i v i d u a l s . ICU Nurses and the B r a i n Dead P a t i e n t 124 Consequently, i n c o n s i s t e n c i e s e x i s t when as nurses they provide care to the b r a i n dead. F i n a l l y , the p r o v i s i o n of care to the b r a i n dead p a t i e n t i s o f t e n incongruent with the p a r t i c i p a n t ' s past n u r s i n g experiences. The f o l l o w i n g accounts i l l u s t r a t e t h i s i n s i t u a t i o n s i n v o l v i n g sending a p a t i e n t to the o p e r a t i n g room, d i s c o n t i n u i n g the v e n t i l a t o r and the c o n t i n u a t i o n of treatment f o r a dead p a t i e n t . P. I thought i t was kind of a gross t h i n g cause you send across a warm person and nothing comes back except an empty bed. And that i s not a normal n u r s i n g t h i n g . The normal n u r s i n g t h i n g i s you send somebody to the OR and you get somebody back. I t j u s t s o r t of goes with i t , r i g h t ? P. But there i s j u s t something that i s incongruent about being a nurse and t u r n i n g a v e n t i l a t o r o f f , I t h i n k . . . I t almost... f e e l s a b i t unreal because i t i s so con t r a r y to what we do. P. There i s some f r u s t r a t i o n sometime and you've s o r t of f a i l and yet you're s t i l l c o n t i n u i n g on. You've r e a l l y f a i l e d to save t h e i r l i v e s and yet you're s t i l l c o n t i n u i n g on to care f o r them. P. L i k e I've done a l l I can do and now they're gone...I guess I j u s t think t h e i r l i f e i s over. They should be taken o f f [the v e n t i l a t o r ] immediately. When they're considered b r a i n dead they're dead. Take them o f f and l e t them be. T h e i r l i f e i s f i n i s h e d you know. And th a t ' s hard i f they're not. Furthermore, F e s t i n g e r proposes dissonance i s a s t a t e of p s y c h o l o g i c a l discomfort which i s analogous to the p h y s i o l o g i c a l d r i v e s t a t e s of hunger and t h i r s t . T h e r e f o r e , ICU Nurses and the Brain Dead Patient 125 crucial to his theory is that "dissonance, that is, the existence of nonfitting relations among cognitions, is a motivating factor in its own right" (Festinger, 1957, p. 3). Accordingly, when the participants of this study experience internal discord they are motivated to reduce the personal distress which is present. Festinger's theory has generated much research and controversy which has yet to be resolved. Cooper (1971) proposes that "a person will experience cognitive dissonance only to the extent that he feels responsible for his discrepant behavior" (p. 354) and if undesired and irrevocable consequences result (Copper & Goethals, 1974; Copper & Worchel, 1970; Goethals & Cooper, 1972). The individual's acceptance of this responsibility and recognition of the undesirability of the unalterable outcome then results in "dissonance motivation, that is, aversive pressure to change one's attitude" (Cooper & Fazio, 1984, p. 257). However, there is also the view that dissonance results from a discrepancy between self-concept and the outcome of behaviour (Aronson, 1969; Greenwald & Ronis, 1978; Nei, Helmreich & Aronson, 1969; Muldary, 1983). "Thus, individuals strive for consistency for the purpose of maintaining an orderly and predictable sense of self and preventing variations from disrupting their lives" (Muldary, 1983, p. 81) rather than for maintaining consistency among their cognitions. At the center of this controversy is the ICU Nurses and the Brain Dead Patient 126 question of cognitive dissonance as a motivational state or simply as a state of inconsistency which is then dependent on self-concept or responsibility and type of outcome to determine motivation to change a behaviour or cognition. Elkin and Leippe (1986) contend that research to date has not answered this theoretical question or resolved the practical issue of "how people typically deal with cognitive inconsistency, driven or not" (p.64). The findings of this research study contribute to the pragmatic issue of dissonance in relation to how intensive care unit nurses deal with internal and external discord resulting from the provision of care to brain dead patients. The application of cognitive dissonance theory to nursing appears to be relatively uncommon with only one article having been retrieved from a computer search of the literature. Lederach and Lederach (1987) report on a six year study to assess cognitive dissonance in nursing students with a strong religious background enrolled in a psychiatric/mental health nursing course at a Mennonite college. For this purpose the authors had previously developed the Religious and Mental Health Inventory (RMHI) which is a five point Likert scale. However, the development of the RMHI and the resulting six year study occurred only after a number of observations were made by one of the authors. These observations indicated that dissonance did occur between the students' religious beliefs ICU Nurses and the B r a i n Dead P a t i e n t 127 and t h e i r p e r c e p t i o n of the p r i n c i p l e s of mental h e a l t h taught. In a d d i t i o n , there may be dissonance r e l a t e d to t h e i r a t t r i b u t i o n of i l l n e s s and/or outcomes to God or of t h e i r p e r c e p t i o n of r e l i g i o s i t y as a p s y c h i a t r i c symptom i n c l i e n t s . I t may a l s o be d i f f i c u l t to acknowledge that r e l i g i o n has sometimes hurt r a t h e r than helped c l i e n t s who are h o s p i t a l i z e d (Lederach & Lederach, 1987, p. 32). In a more formal f a s h i o n t h i s r e s e a r c h e r through an in-depth comparative a n a l y s i s of i n t e r v i e w s concludes that c o g n i t i v e or personal dissonance i s a l s o part of the e s s e n t i a l s t r u c t u r e of c a r i n g f o r a b r a i n dead p a t i e n t . Despite the s c a r c i t y of i n f o r m a t i o n i n the n u r s i n g l i t e r a t u r e on c o g n i t i v e dissonance and the experience of p r o v i d i n g care to the b r a i n dead p a t i e n t , a number of the reasons f o r the occurrence of dissonance can be e x t r a c t e d from the e x i s t i n g l i t e r a t u r e on death and dying. As w e l l , many of the i n t e r n a l c o n f l i c t s which the p a r t i c i p a n t s d e s c r i b e have been noted i n the l i t e r a t u r e . From the work of Sinacore (1981) comes the suggestion that i n t e r n a l c o n f l i c t i s i n e v i t a b l e when c a r i n g f o r the dead as the r e a c t i o n s to death are i n f l u e n c e d by the g e n e r i c education of nurses. His t h e s i s i s that there i s a b a s i c i n c o m p a t i b i l i t y between the framework of the h e a l t h p r o f e s s i o n a l ' s education which s t r e s s e s s c i e n c e and ICU Nurses and the B r a i n Dead P a t i e n t 128 technology and death education which " i s a f f e c t u a l , e x p e r i e n t i a l , and h i g h l y p e r s o n a l . As a r e s u l t , humanistic concepts of death and dying can not be e f f e c t i v e l y i n t e g r a t e d w i t h i n the general a r c h i t e c t u r e of h e a l t h p r o f e s s i o n s education. At best, the l e a r n e r i s l e f t to r e c o n c i l e antinomies i n a personal tug of war" ( S i n a c o r e , 1981, p. 123). One of the p a r t i c i p a n t s of t h i s study a l s o r e f l e c t s upon t h i s p o i n t : P. ...they [the p a t i e n t ] are s t i l l dead a f t e r a l l and th a t ' s very d i f f i c u l t , e s p e c i a l l y when we're used to tak i n g care of the l i v i n g . . . i t j u s t goes a g a i n s t what we're s o r t of taught... they [ n u r s i n g s c h o o l s ] don't t e l l you about t h a t . That's f o r sure. I t doesn't f a l l i n t o a neat l i t t l e c ategory. I t ' s a very d i f f i c u l t area t h a t ' s f o r sure. Others (Bunch & Zahra, 1976; Quint, 1966; R e i s e t t e r & Thomas, B. 1986) a l s o a s s e r t that nurses lac k p r e p a r a t i o n and e f f e c t i v e r o l e behaviours f o r t h e i r involvement with the dying p a t i e n t and death. I f the nurse does not posses the r o l e behaviours to deal with death she w i l l u t i l i z e those which she i s f a m i l i a r with and which are a s s o c i a t e d with l i f e and the l i v i n g . As i l l u s t r a t e d i n the p a r t i c i p a n t s ' accounts the behaviours w i l l be i n o p p o s i t i o n to the knowledge that the p a t i e n t i s dead and personal dissonance w i l l e x i s t . A number of the accounts i n d i c a t e that many of the p a r t i c i p a n t s have d i f f i c u l t y r e c o n c i l i n g t h e i r p ersonal philosophy of what nursing i s with the p r o v i s i o n of care to a b r a i n dead p a t i e n t . Quint (1967) argues that not only ICU Nurses and the B r a i n Dead P a t i e n t 129 are the primary o c c u p a t i o n a l goals of n u r s i n g threatened with the death of the p a t i e n t but on the nurse there i s placed c o n f l i c t i n g pressures which are a s s o c i a t e d with the work the nurse i s expected.to perform and her personal r e a c t i o n s to death. She a l s o d e s c r i b e s the normal sequencing of events during dying as i n c l u d i n g the d e f i n i n g of dying, the r e c o g n i t i o n that nothing more can be done, the death watch and f i n a l l y the pronouncement of death (Quint, 1967). For the nurse c a r i n g f o r the b r a i n dead p a t i e n t t h i s normal sequencing of events i s absent. The p a t i e n t does not go through the process of dying but jumps from being a l i v e one minute to being dead the next without any apparent change i n c l i n i c a l s t a t u s or treatment (Walker, 1985). There i s a s h i f t i n e x p e c t a t i o n s and dissonance occurs. To f u r t h e r confound t h i s dissonant s i t u a t i o n , the s t a t e of death w i t h i n the h o s p i t a l s e t t i n g may be prolonged due the p a t i e n t becoming an organ donor and the normal n u r s i n g a c t i v i t i e s which Quint (1967) s t a t e s b r i n g s the death of a p a t i e n t to a c l o s e f o r the nurse do not occur. There i s no p r e p a r a t i o n of the p a t i e n t ' s body and no f i n a l n o t a t i o n i n the p a t i e n t ' s c h a r t . T h e r e f o r e , c l o s u r e i s not p o s s i b l e and as evidenced by the f o l l o w i n g i n t e r n a l d i s c o r d occurs: P. When they [the b r a i n dead p a t i e n t ] a c t u a l l y take o f f f o r the OR I have ... t h i s ... emptiness. Probably because I'm not going to f i n i s h the j o b . . . ICU Nurses and the B r a i n Dead P a t i e n t 130 As d i s c u s s e d i n Chapter Two, Youngner et a l . (1985) d e s c r i b e a number of f a c t o r s which they b e l i e v e are r e s p o n s i b l e f o r making the p r o v i s i o n of nu r s i n g care to a b r a i n dead p a t i e n t d i f f i c u l t . The f i n d i n g s of t h i s study which r e l a t e to the d i f f i c u l t y some p a r t i c i p a n t s have i n ac c e p t i n g the f a c t that the p a t i e n t i s b r a i n dead, the q u e s t i o n i n g of the reason f o r nu r s i n g care, and the personal c o n f l i c t s r e g a r d i n g t r a n s p l a n t a t i o n confirm Youngner's statements. Sophie's et a l . (1983) study i n d i c a t e s that a small number of ICU nurses (6%) have r e s e r v a t i o n s r e g a r d i n g the d i a g n o s i s of b r a i n death. T h i s i s a l s o a f i n d i n g of t h i s present study with two of the nurses i n d i c a t i n g d i f f i c u l t y a c c e p t i n g the pronouncement of b r a i n death without a d d i t i o n a l p h y s i c a l proof. The f i n d i n g s of a recent study by Youngner et a l . (1989) i n d i c a t e that 58% of h i s respondents (195 nurses and p h y s i c i a n s ) do not have a coherent concept of death. T h i s l a c k of conceptual c l a r i t y r e g a r d i n g death and b r a i n death i s a l s o evident i n the accounts of some p a r t i c i p a n t s of t h i s study. P a l l i s (1988) i n d i c a t e s that death i s a conceptual q u e s t i o n which must be def i n e d and that the " c r i t e r i a of death...must be r e l a t e d to some o v e r a l l concept of what death means. The t e s t s we c a r r y out and the d e c i s i o n s we make should be l o g i c a l l y d e r i v e d from the e x p l i c i t c onceptual and p h i l o s o p h i c a l premises" (p.124). Others ICU Nurses and the B r a i n Dead P a t i e n t 131 (Cowles, 1984, Green & Wikler, 1980; Wikler &.Weisbard, 1989) have concurred that without a c l e a r r e l a t i o n s h i p between the c r i t e r i a of b r a i n death and the g l o b a l concept of death c o g n i t i v e incoherence w i l l continue to e x i s t among h e a l t h care p e r s o n a l . Lamb (1985) notes that "while t e s t s f o r the death of the b r a i n are c o n t i n u a l l y improving very l i t t l e work has been done to e x p l a i n why the death of the b r a i n i s a necessary and s u f f i c i e n t c o n d i t i o n f o r the death of a human being" ( p r e f a c e ) . He a l s o d i s c u s s e s the r e l a t i o n s h i p between death of a human being and death of a person. The former being a matter of s c i e n t i f i c f a c t whereas the l a t t e r "may be s a i d to have died on a number of l e v e l s ; p h y s i c a l l y , p s y c h o l o g i c a l l y , morally or s p i r i t u a l l y " (Lamb, 1985, p. 7). For two p a r t i c i p a n t s t h e i r c o g n i t i v e dissonance i s centered around t h i s r e l a t i o n s h i p . P. I f the person i s [has] a c t u a l l y died then t h a t ' s . . . w e l l now I'm g e t t i n g here two t h i n g s . Cause I b e l i e v e the person i s a c t u a l l y gone, dead. But the body i s s t i l l a l i v e ! P. B r a i n dead and p h y s i c a l l y dead...Brain dead i s the death of an organ...Ok t h a t ' s the s o u l but death i t s e l f is...when there's a complete body death. The c o n f l i c t s the p a r t i c i p a n t s d e s c r i b e r e g a r d i n g the concept of b r a i n death may a l s o be r e l a t e d to how during t h e i r work experience they have seen the death of a p a t i e n t determined. In some cases, the p h y s i c i a n assesses f o r the ICU Nurses and the B r a i n Dead P a t i e n t 132 absence of c a r d i a c and r e s p i r a t o r y f u n c t i o n and i n other i n s t a n c e s the emphasis i s placed on the i r r e v e r s i b l e c e s s a t i o n of b r a i n f u n c t i o n . I t may appear there are a c t u a l l y two types of death. Lamb (1985) i n d i c a t e s that the l i t e r a t u r e a c t u a l l y c o n t a i n s three d i s t i n c t but r e l a t e d f o r m u l a t i o n s of the concept. The f i r s t maintains there are two types of death with two sets of c r i t e r i a ( t r a d i t i o n a l and n e u r o l o g i c a l ) f o r determining death. The second a s s e r t s that death of the b r a i n i s e s s e n t i a l f o r death of the person but that t h i s death may be determined e i t h e r by the absence of v i t a l f u n c t i o n s or by the c r i t e r i a f o r b r a i n death. The t h i r d a l l e g e s that b r a i n death i s the only concept of death and that c e s s a t i o n of c a r d i a c and r e s p i r a t o r y f u n c t i o n "simply i n f o r m [ s ] us that b r a i n death i s imminent...[that i s ] . . . d e a t h i s not death of the heart or lungs; c e s s a t i o n of c a r d i o - r e s p i r a t o r y f u n c t i o n s i s a cause, not a s t a t e of death" (Lamb, 1985, p.29). Thus t h i s l a c k of conceptual c l a r i t y r e g a r d i n g death i s a c o n t r i b u t o r to the personal dissonance which nurses c a r i n g f o r the b r a i n dead p a t i e n t experience. I n t e r p e r s o n a l Dissonance I n t e r p e r s o n a l dissonance i s a term t h i s r e s e a r c h e r coined to d e s c r i b e the s i t u a t i o n s where the p a r t i c i p a n t s ' personal b e l i e f s , p e r c e p t i o n s , o p i n i o n s , knowledge and behaviours oppose those of i n d i v i d u a l s with whom they i n t e r a c t . Hence t h i s terminology can not be d i s c o v e r e d ICU Nurses and the B r a i n Dead P a t i e n t 133 w i t h i n the e x i s t i n g l i t e r a t u r e . However, i t i s f e l t that l i t e r a t u r e on 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 provides some i n s i g h t i n t o t h i s l a c k of e x t e r n a l harmony which e x i s t s between p a r t i c i p a n t s and, the p a t i e n t ' s f a m i l y members, the p h y s i c i a n s , the P a c i f i c Organ R e t r i e v a l f o r T r a n s p l a n t a t i o n Team and nur s i n g c o l l e a g u e s . In a d d i t i o n , as a number of the i n t e r p e r s o n a l c l a s h e s centered around b e l i e f s and values r e l a t e d to e t h i c a l or moral i s s u e s a computer search of t h i s l i t e r a t u r e was a l s o conducted. Travelbee (1971) d e s c r i b e s nursing as an ' i n t e r p e r s o n a l process* i n v o l v i n g d i r e c t l y or i n d i r e c t l y i l l and healthy i n d i v i d u a l s , t h e i r f a m i l y , and members of the a l l i e d h e a l t h care p r o f e s s i o n s . A r e l a t i o n s h i p i s t h e r e f o r e e s t a b l i s h e d between the nurse and these other i n d i v i d u a l s and as i n any r e l a t i o n s h i p there e x i s t "...mutual demands and e x p e c t a t i o n s . The more i n t i m a t e l y i n v o l v e d a r e l a t i o n s h i p , the g r e a t e r the pressure the p a r t i e s exert on one another to f u l f i l l these e x p e c t a t i o n s " ( T o f f l e r , 1970, p. 98). The nurse's personal v a l u e s , b e l i e f s , and a t t i t u d e s "are the c r i t e r i a a g a i n s t which we [she] judge[s] o u r s e l v e s [ h e r s e l f ] and o t h e r s . They a l s o account f o r many of the d i f f e r e n c e s between o u r s e l v e s [ h e r s e l f ] and o t h e r s " (Muldary, 1983, p. 109). Muldary (1983) hypothesizes that " . . . v a l u e - c o n f l i c t s e x i s t when one person's p o s i t i v e values are another person's negative values, or when one person places high p r i o r i t y on a value that i s low i n the other's system of p r i o r i t i e s " (p. ICU Nurses and the B r a i n Dead P a t i e n t 134 206). The r e s u l t i s i n t e r p e r s o n a l c o n f l i c t and t e n s i o n which "are u n d e s i r a b l e because they threaten our sense of inner harmony, can make us f e e l unhappy and g e n e r a l l y miserable, and i n essence, d i s r u p t the order and balance we value i n l i f e " (Muldary, 1983, p.206). The personal t e n s i o n experienced by the p a r t i c i p a n t s of t h i s study i s w e l l d e s c r i b e d by the accounts presented i n the preceding chapter. Gadow (1985) r a i s e s the p o s s i b i l i t y of h e a l t h care technology causing a c o n f l i c t to e x i s t between the p r o f e s s i o n a l goals of c a r i n g and c u r i n g . She c i t e s as an example the technology i n r e s u s c i t a t i v e and i n t e n s i v e care measures that prevent death with d i g n i t y . T h i s dominance of machines and t e c h n o l o g i c a l experts (nurses and p h y s i c i a n s ) reduces the body to a s c i e n t i f i c o b j e c t which "negates the v a l i d i t y of s u b j e c t i v e meanings of the person's experience...Thus c l i n i c a l d e c i s i o n s are based upon e x t e r n a l i n t e r p r e t a t i o n s , not upon the meanings and coherence of the body as c o n s t i t u t e d by the p a t i e n t " (Gadow, 1985, p. 36). I t i s p o s s i b l e to c a r r y Gadow's philosophy one step f u r t h e r and say that the t e c h n o l o g i c a l advances i n r e s u s c i t a t i o n now prevent death with d i g n i t y and permit c l i n i c a l d e c i s i o n s to be made without regard to the person whom the b r a i n dead p a t i e n t once was. The c o n f l i c t which e x i s t s i n t h i s s i t u a t i o n i s the c u r i n g of f a i l i n g organs versus the c a r i n g of the b r a i n dead p a t i e n t . Support f o r ICU Nurses and the Brain Dead Patient 135 this belief is found in one participant's account of how Mr Jones had ceased to exist and was now only a potassium of 3.4. P. ...they [the transplant team] I feel definitely come in and they look at numbers and they look at lines and they don't look at who is attached at the end of that... According to Sheard (1980) the conflict that plagues nurses and physicians even though they work side by side results from each structuring their work in radically different ways and a tendency "to misunderstand the methods and inner logic of one another's work" (p. 14). He describes six basic work dimensions on which nurses and physicians differ. Two of these dimensions such as a sense of time and a sense of resources are applicable to this study. With regard to the former Sheard (1980) sees the physician as having an "enduring sense of time" (p. 14) in that his/her work is determined by the course of the illness. Whereas, nurses have "an hourly, strictly scheduled sense of time" conceived as a twelve-hour day and "organized around a rigid schedule of tasks" (Sheard, 1980, p. 15). This may in part account for some of the interpersonal dissonance the participants experience when waiting for the physician to declare the patient brain dead. In the work dimension involving resources, he sees the physician as having an "abundance view of hospital resources" and this being opposed by nurses who have a ICU Nurses and the B r a i n Dead P a t i e n t 136 " s c a r c i t y view of h o s p i t a l r e s o u r c e s " (Sheard, 1980, p. 15). He b e l i e v e s the abundance view supports the p h y s i c i a n s ' "strong c o n s e r v a t i v e b i a s which i s due, i n p a r t , to an exaggerated f e a r of law s u i t s " (Sheard, 1980, p. 15). T h i s helps to e x p l a i n some of the " i n c o n s i s t e n c i e s " one p a r t i c i p a n t f e e l s when: P. Right l i k e we're s o r t of assuming that t h i s p a t i e n t i s probably been b r a i n dead and we're c a r r y i n g on e v e r y t h i n g a g g r e s s i v e l y and then they [the p h y s i c i a n s ] w i l l do these t e s t s . . . The abundance view a l s o r e l a t e s to the c o n f l i c t the nurses r e p o r t when they p e r c e i v e a h e s i t a n c y on the part of the p h y s i c i a n to terminate l i f e support and i n the words of one p a r t i c i p a n t : "you're wasting time, r e s o u r c e s . . . " Aroskar (1985) o f f e r s f u r t h e r support f o r Sheard's views. She reasons that p h y s i c i a n s and nurses have " d i f f e r i n g experiences and views of the work world" (Aroskar, 1985, p. 47) and that i t i s the " l a c k of understanding the ways i n which p h y s i c i a n s and nurses experience t h e i r work worlds [ t h a t ] probably c o n t r i b u t e s more to f r u s t r a t i o n and misunderstandings i n p h y s i c i a n - n u r s e r e l a t i o n s h i p s than many r e a l i z e " (Aroskar, 1985, p. 49). A sense of t h i s l a c k of understanding of the other's experience i s found i n the account of one p a r t i c i p a n t who a f t e r commenting n e g a t i v e l y on p h y s i c i a n involvement with f a m i l i e s s t a t e s : ICU Nurses and the B r a i n Dead P a t i e n t 137 P. Of course i t ' s easy f o r me to say that I'm s i t t i n g on t h i s s i d e of the fence and I can't see what's on the p h y s i c i a n s s i d e . Chapelsky (1981) suggests that c o n f l i c t i s i n h e r e n t i n the p h y s i c i a n - n u r s e r e l a t i o n s h i p due to " i n c o m p a t i b i l i t i e s i n p r o f e s s i o n a l r o l e s and disagreements over moral judgments" (p. 179). The f i r s t i n v o l v e s the p h y s i c i a n and nurse posse s s i n g d i f f e r e n t personal and p r o f e s s i o n a l o b l i g a t i o n s and l o y a l t i e s . While the p h y s i c i a n ' s l o y a l t y i s c o n f i n e d to the p a t i e n t , the nurse has o b l i g a t i o n s to the p a t i e n t , the p h y s i c i a n and the i n s t i t u t i o n (Chapelsky, 1981; Aroskar, 1981). The i n t e r p e r s o n a l dissonance that may r e s u l t i s seen i n one p a r t i c i p a n t ' s account of the c a r d i o l o g i s t r e f u s i n g to w r i t e a no code order on a b r a i n dead p a t i e n t (page 80) and the accounts of the t r a n s p l a n t team's e f f o r t s to o b t a i n organs f o r unknown r e c i p i e n t s (pages 83 - 87). The second, disagreements over moral judgments r e v o l v e around the p h y s i c i a n being c e n t r a l to d e c i s i o n making "while the nurse i s r e l e g a t e d to f o l l o w i n g orders w i t h i n the p h y s i c i a n ' s framework" (Chapelsky, 1981, p. 180). From t h i s study an exemplary s i t u a t i o n i s the c o n f l i c t of moral judgments between the I n t e n s i v e Care U n i t D i r e c t o r and the nurse which occur i n the case of the young man who d e s p i t e being b r a i n dead f o r three days i s s t i l l maintained on l i f e support systems, (page 76). The f i n d i n g s of a study by Davis (1989) a l s o support the e x i s t e n c e of moral c o n f l i c t s as being a source of ICU Nurses and the B r a i n Dead P a t i e n t 138 i n t e r p e r s o n a l dissonance. In Davis' study, which had as i t ' s goal the determination how nurses d e f i n e e t h i c a l dilemmas, 100 Canadian nurses were surveyed. Three d i s t i n c t d e f i n i t i o n s evolved and each i s f e l t to be r e l e v a n t to the f i n d i n g s of t h i s study. One group of nurses "saw ' e t h i c a l dilemmas' as a c o n f l i c t when the nurse's own p r i n c i p l e s or b e l i e f s c o n f l i c t e d with those of other nurses, s u p e r v i s o r s , p h y s i c i a n s or the i n s t i t u t i o n . . . " (Davis, 1989, p. 87). T h i s c o n f l i c t of p r i n c i p l e s or b e l i e f s i s comparable to t h i s r e s e a r c h e r ' s d e f i n i t i o n of i n t e r p e r s o n a l dissonance o c c u r r i n g between the nurse and p h y s i c i a n s , nurse c o l l e a g u e s , and PORT. From the p e r s p e c t i v e of t h i s study PORT can be considered to represent the i n s t i t u t i o n r e f e r r e d to i n Davis' survey. She a l s o r e p o r t s that t h i s group of nurses b e l i e v e that an e t h i c a l c o n f l i c t might e x i s t between what the nurse b e l i e v e s i s necessary f o r good care and the i n s t i t u t i o n ' s budget r e s t r a i n t s . A c o r o l l a r y of t h i s could be the i n s t i t u t i o n having a budget f o r a program such as t r a n s p l a n t a t i o n and the nurse viewing the organ h a r v e s t i n g procedures as attempts to maintain that budget and not as attempts to provide p a t i e n t c a r e . T h i s f e e l i n g i s expressed by one p a r t i c i p a n t of t h i s study. P. I think they (PORT) are t r y i n g to meet t h e i r numbers so that they can meet t h e i r budget and get the same budget next year which I'm not sure that I agree with but... ICU Nurses and the B r a i n Dead P a t i e n t 139 A second group of Davis' s u b j e c t s d e f i n e d an e t h i c a l dilemma as "the grey area of d e c i s i o n based on where l i f e begins and ends, the q u a l i t y of l i f e and the nurse's r o l e " (Davis, 1989, p. 87). The accounts of t h i s study's p a r t i c i p a n t s demonstrate s i m i l a r c o n f l i c t or dissonance when the p h y s i c i a n s h e s i t a t e to terminate l i f e support on the b r a i n dead p a t i e n t or i n c l u d e the f a m i l y members i n the d e c i s i o n r e g a r d i n g whether or not the v e n t i l a t o r should be di s c o n n e c t e d . These d e c i s i o n s are viewed by the nurses as i n a p p r o p r i a t e (Quint, 1967) and v i o l a t i o n s of "nothing more than a p h i l o s o p h i c a l or personal sense of r i g h t and wrong" (Johnstone, 1989, p.83). A t h i r d group of nurses from Davis' survey d e f i n e d e t h i c a l dilemmas as "conduct i s s u e s , when someone's conduct was considered e m o t i o n a l l y based i n s t e a d of r a t i o n a l l y based" (Davis, 1989, p. 87). T h i s type of e t h i c a l dilemma a l s o corresponds to t h i s study's f i n d i n g s of i n t e r p e r s o n a l dissonance. One such example i s the account of a f a m i l y ' s i n a b i l i t y to accept t h e i r daughter's death c l a s h i n g with the nurse's knowledge about b r a i n death (page 72). Youngner et a l (1985) b e l i e v e t h i s c o n f r o n t a t i o n occurs as nurses are more em o t i o n a l l y and i n t e l l e c t u a l l y prepared to accept death and Quint (1966) i n d i c a t e s t h i s may be r e l a t e d to nurses having more f a m i l i a r i t y with death, as more and more i n d i v i d u a l s die i n the h o s p i t a l , whereas the f a m i l y i s i n c r e a s i n g l y s h i e l d e d from the d e a l i n g with death. ICU Nurses and the Brain Dead Patient 140 Distancing The findings of this study indicate that distancing is a process by which the participants place some psychological distance between themselves and the brain dead patient or in some instances the family members. The participants see distancing as a necessity in order to separate their work life from their home life, to continue to function in the intensive care unit and to protect themselves emotionally. It is a method of coping with the personal or interpersonal dissonance they are experiencing. Within the literature various synonyms for distancing such as withdrawal, avoidance, therapeutic distancing, defensive distancing, professional distancing, emotional distancing and physical distancing are found. In addition, distancing is discussed in a variety of contexts. It is seen as a coping mechanism used by nurses and other health care personnel to deal with a stressful situation such as death and dying (Conboy-Hill, 1986; Davitz & Davitz, 1975; Hay & Oken, 1972; Larson, 1987; Maguire, 1985; Murphy, 1986; Quint, 1966; Stehle, 1981; Travelbee, 1971;) It is considered to occur as the result of burn-out which is related to a culmination of job related stresses (Beland, 1979; Muldary, 1983) or is discussed in the setting of busy health care workers attending to the disease and not to the person (Mechanic, 1972; Roberts, 1986). ICU Nurses and the B r a i n Dead P a t i e n t 141 In a l l i n s t a n c e s , d i s t a n c i n g i s explored i n r e l a t i o n to l i v i n g p a t i e n t s or p a t i e n t s who are dying. No r e f e r e n c e to d i s t a n c i n g t a c t i c s used with regard to c a r i n g f o r a dead p a t i e n t could be found. T h i s i s an important poin t as some authors view d i s t a n c i n g as negative because " i t i s much e a s i e r to harm someone who has been dehumanized i n t o a nameless, f a c e l e s s , i n s i g n i f i c a n t organism that i s nothing but a problem t a k i n g up space. I t i s much e a s i e r to cause harm to 'what's-his-name,' and who-cares-anyway?'" (Muldary, 1983, p.257). To date i t remains to be proven that d i s t a n c i n g i s 'harmful' to the b r a i n dead p a t i e n t or even h i s f a m i l y members. However d e s p i t e t h i s void i n the l i t e r a t u r e much can be e x t r a p o l a t e d to t h i s study from what has been w r i t t e n . R a t i o n a l e f o r d i s t a n c i n g According to Hay and Oken (1972, p. 109) the major problem f a c i n g i n t e n s i v e care u n i t nurses i s "the r e p e t i t i v e exposure to death and dying, posing t h r e a t s of o b j e c t l o s s and p e r s o n a l f a i l u r e . " Consequently, i n order to continue to f u n c t i o n i n the ICU and to " p r o t e c t h e r s e l f - from g r i e f , a n x i e t y , g u i l t , rage, exhausted overcommitment, o v e r s t i m u l a t i o n and a l l the r e s t . She has no p h y s i c a l escape. But she can avoid, or at l e a s t a ttenuate, the meaning and emotional impact of her work" (Hay & Oken, 1972, p. 114). To do t h i s they see the nurse employing d e f e n s i v e d i s t a n c i n g techniques. They a l s o i n d i c a t e that another ICU Nurses and the B r a i n Dead P a t i e n t 142 reason f o r d i s t a n c i n g i s the nurse c a r i n g f o r the p a t i e n t and having to continue to provide care d e s p i t e knowing the p a t i e n t ' s outcome. T h i s r e f l e c t s the i n t e r p e r s o n a l dissonance r e f e r r e d to i n Chapter Four (pages 85 - 86). D a v i t z and D a v i t z (1975) conducted small group i n t e r v i e w s with more that 200 female nurses p r a c t i c i n g i n m e t r o p o l i t a n New York h o s p i t a l s . A component of the i n t e r v i e w s asked the p a r t i c i p a n t s to d e s c r i b e t h e i r r e a c t i o n to s u f f e r i n g of a p a t i e n t . T h e i r f i n d i n g s i n d i c a t e that r e p e t i t i v e exposure to s u f f e r i n g leads to a sense of being overwhelmed. The e f f e c t s of t h i s repeated exposure were f e l t not only at work but a l s o at home. These b e l i e f s are i n accord with the study's f i n d i n g s and represent the sentiments of the study's p a r t i c i p a n t s . D a v i t z and D a v i t z (1975) a l s o found that "to maintain t h e i r own emotional s t a b i l i t y and remain e f f e c t i v e i n p r o f e s s i o n a l p r a c t i c e , nurses b u i l d p s y c h o l o g i c a l defenses a g a i n s t overinvolvement. These defenses t y p i c a l l y i n v o l v e e s t a b l i s h i n g some emotional d i s t a n c e " (p.1508). Larson (1987) asked 495 nurses who were p a r t i c i p a t i n g i n p r o f e s s i o n a l conferences and e d u c a t i o n a l programs to anonymously w r i t e down s e c r e t thoughts r e l a t e d to t h e i r work that they would not f e e l comfortable s h a r i n g openly. He d i s c o v e r e d that "more than one out of every f i v e h e lper s e c r e t s i n t h i s sample contained d e s c r i p t i o n s of wanting to or having a c t u a l l y e m o t i o n a l l y or p h y s i c a l l y d i s t a n c e d ICU Nurses and the B r a i n Dead P a t i e n t 143 o n e s e l f from p a t i e n t s , p a t i e n t s ' f a m i l i e s , s t a f f or p e r s o n a l f a m i l y members" (p.24). These emotional and p h y s i c a l d i s t a n c i n g t a c t i c s were attempts at decreasing emotional involvement. Most authors see d i s t a n c i n g as e i t h e r an emotional or p h y s i c a l s e p a r a t i o n from the p a t i e n t or a d e p e r s o n a l i z a t i o n of the p a t i e n t (Beland, 1979, Hay & Oken, 1972; Larson, 1987, Muldary, 1983; Quint, 1966; Roberts, 1986). However, given the nature of i n t e n s i v e care u n i t n u r s i n g where the nurse i s assigned one p a t i e n t and i s p h y s i c a l l y s t a t i o n e d at the p a t i e n t ' s bedside p h y s i c a l s e p a r a t i o n from the p a t i e n t i s not p o s s i b l e . Indeed, as evidenced i n Chapter Four, the d i s t a n c i n g by the p a r t i c i p a n t s i n v o l v e s e i t h e r emotional detachment or d e p e r s o n a l i z a t i o n . Detachment Beland (1979) b e l i e v e s detachment i s a consequence of burn-out and that the degree of detachment may be e i t h e r s l i g h t or profound. When the detachment i s s l i g h t t h i s permits: . . . j u s t enough emotional d i s t a n c e from the p a t i e n t to evaluate the s i t u a t i o n from a p o s i t i o n of g r e a t e r o b j e c t i v i t y i n order to more r e a l i s t i c a l l y plan c a r e . T h i s detachment does not mean that the nurse i s not i n v o l v e d with the p a t i e n t . Quite the c o n t r a r y . Emotional involvement on the part of the nurse with the ICU Nurses and the B r a i n Dead P a t i e n t 144 p a t i e n t may be an e s s e n t i a l precursor of t h e r a p e u t i c d i s t a n c i n g or detachment (p. 199) But to maintain some emotional involvement and to di s t a n c e o n e s e l f i s d i f f i c u l t as i s i l l u s t r a t e d by the f o l l o w i n g account. P. I t r y to a c e r t a i n extent um detach myself to a point where I want to be s u p p o r t i v e f o r the f a m i l y but there i s a f i n e l i n e of perhaps of g e t t i n g i n v o l v e d and s t a y i n g on the other s i d e . . . T h i s p a r t i c i p a n t ' s attempts at detachment are c o n s i s t e n t with Larson's (1987) philosophy that "every nurse...must f i n d a way to be emo t i o n a l l y i n v o l v e d with p a t i e n t s and f a m i l i e s that i s h e l p f u l , congruent with one's unique h e l p i n g s t y l e , and not overwhelming" (p. 24). Beland (1979) a l s o b e l i e v e s that when the detachment i s profound there e x i s t s "so much emotional d i s t a n c i n g on the part of the nurse that she begins to f u n c t i o n as an automaton without f e e l i n g or evident concern f o r the needs of p a t i e n t s " (pp. 199 - 200). To a degree the f i n d i n g s of t h i s study concur with Beland i n that the nurse may be going "through the motions of ta k i n g care of the p a t i e n t but I am c e r t a i n l y not i n t o i t " or the nurse may view the care of the b r a i n dead donor p a t i e n t as an "academic e x e r c i s e " . However, the c r u c i a l d i s t i n g u i s h i n g f e a t u r e of t h i s study i s that the p a t i e n t s f o r whom the nurses are c a r i n g are dead and the p a r t i c i p a n t s do not see them as possessing needs. T h i s i s evident i n the f o l l o w i n g accounts. ICU Nurses and the B r a i n Dead P a t i e n t 145 P. I think the f a c t that there i s no hope, I mean once a person i s b r a i n dead t h a t ' s i t . There i s nothing l e f t . . . t h e r e i s no use. You've reached your end. You're not going to do anything t h a t ' s going to make any d i f f e r e n c e . P. I mean there i s a person but...they're not v i a b l e . So i f they're not v i a b l e i t seems that no matter what I am going to do i t ' s not going to change i t . P. I don't worry about them [the b r a i n dead p a t i e n t ] any more because they're gone. They're beyond anything. Consequently, t h i s r e s e a r c h e r b e l i e v e s that the negative connotations which Beland (1979) attaches to profound detachment are not a p p l i c a b l e to the f i n d i n g s of t h i s study. Travelbee (1971) and D a v i t z and D a v i t z (1975) i n f e r that the nurse by repeated exposure to i l l n e s s , s u f f e r i n g and death i s confronted with the v u l n e r a b i l i t y of others and t h e r e f o r e comes face to face with her own v u l n e r a b i l i t y . One manner i n which the nurse may deal with these encounters " i s to withdraw from the i n d i v i d u a l or s i t u a t i o n producing the f e e l i n g of i n d i f f e r e n c e or detachment. I n d i f f e r e n c e or detachment become p r o t e c t i v e mechanisms i n that they prevent the nurse from e x p e r i e n c i n g the f u l l impact of the a n x i e t y that i s engendered i n the s i t u a t i o n " (Travelbee, 1971, p. 41). The p a r t i c i p a n t s of t h i s study do i n d i c a t e that the p r o v i s i o n of care to the b r a i n dead p a t i e n t makes them more aware of t h e i r own m o r t a l i t y . ICU N u r s e s and t h e B r a i n Dead P a t i e n t 146 P. More aware even though I n e v e r e x p e c t a n y t h i n g t o happen to me or t h e p e o p l e t h a t I c a r e a b o u t . I know i t happens t o f a m i l i e s a l l t h e t i m e and I know i t ' s t h e r e and I know i t can happen and I know e v e r y t h i n g can change so q u i c k l y and I j u s t know t h a t . . . P. L i f e ' s , l i f e ' s way t o o s h o r t and way t o o t r a g i c and d o n ' t l e a v e a n y t h i n g t h a t you w o u l d n ' t want l e f t t e n d e d t o . . . Y o u t h i n k o f your own [ m o r t a l i t y ] and you t h i n k o f and you do t h i n k o f t h o s e p e o p l e who a r e c l o s e to you. And i t ' s n o t i n a m o r b i d way. J u s t makes you t h i n k t w i c e t h a t i t c o u l d have been THEM. So I t h i n k i t makes you e v a l u a t e y o u r r e l a t i o n s h i p s and I t h i n k y o u r f r i e n d s and y o u r f a m i l y and I t h i n k i t makes you t h i n k t w i c e a b o u t them. P. I t makes you v e r y aware you can be h e r e one m i n u t e and gone the n e x t . ' I t ' s a l s o made me have a l i v i n g w i l l a n d . . . I have t a l k e d t o my f a m i l y a b o u t i t t h a t you know t h a t i f s o m e t h i n g happened to me I w o u l d n ' t want to be l i f e s u p p o r t e d . . . i f I t h i n k o f i t t h e day t h a t I d i e and I go t o heaven I s u r e d o n ' t want t o s t a n d b e f o r e God and have Him s a y : " W e l l you s u r e d i d s h i t t y t h i n g s t o p e o p l e " . . . i f I was b r a i n dead I'd want p e o p l e t o have r e v e r e n c e f o r me...Cause you know what I do f o r m y s e l f or t o o t h e r s I would want done to me. Though t h e s e n u r s e s do become aware of t h e i r own m o r t a l i t y or v u l n e r a b i l i t y t h e i r a c c o u n t s i n d i c a t e t h a t t h e y , u n l i k e T r a v e l b e e ' s b e l i e f , do n o t , b e c a u s e o f t h i s a w a r e n e s s , w i t h d r a w from the p a t i e n t . I n s t e a d t h e y o b t a i n a g r e a t e r a p p r e c i a t i o n f o r l i f e and as t h e l a s t a c c o u n t d e m o n s t r a t e s an i d e n t i f i c a t i o n w i t h th e p a t i e n t . Hence T r a v e l b e e ' s b e l i e f r e g a r d i n g t h e c a u s e o f d etachment i s n o t s een as b e i n g r e l e v a n t t o t h i s s t u d y . On t h e o t h e r hand, h e r s t a t e m e n t t h a t detachment i s a p r o t e c t i v e mechanism i s ICU Nurses and the B r a i n Dead P a t i e n t 147 a p p l i c a b l e . Supporting evidence from the p a r t i c i p a n t ' s accounts i s found i n Chapter Four. D e p e r s o n a l i z a t i o n Within the l i t e r a t u r e a number of authors use the terms d e p e r s o n a l i z a t i o n and dehumanization i n t e r c h a n g e a b l y . An excep t i o n i s Roberts (1986) who d e f i n e s dehumanization "as the r e s u l t of d i v e s t i n g the person of human c a p a c i t i e s and f u n c t i o n s u n t i l he becomes l e s s than a human" (p. 277) and sees d e p e r s o n a l i z a t i o n as "a complex syndrome found i n emotional d i s o r d e r s " (p.278) i n which "there i s an absence of the s e l f image" (p.278). T h i s l a s t p o i n t of view i s not f e l t to be r e l e v a n t to the d i s t a n c i n g seen i n the p a r t i c i p a n t s of t h i s study. Howard (1972) i n a review of the l i t e r a t u r e found that "The concept of dehumanization or d e p e r s o n a l i z a t i o n symbolizes negative s t a t e s that p a t i e n t s or p r o f e s s i o n a l s e x p e rience" (p.59) and that the concept has eleven d i f f e r e n t meanings attached to i t . These a s s o c i a t e d meanings she o u t l i n e s as: (1) people as things ( t h i n g i n g ) , (2) people as machines: dehumanization by technology, (3) people as guinea p i g s : dehumanization by experimentation, (4) people as problems, (5) people as l e s s e r people: dehumanization by degradation, (6) people as i s o l a t e s , (7) people as r e c i p i e n t s of substandard care, (8) people as o p t i o n s , (9) people i n t e r a c t i n g with i c e b e r g s , (10) people i n s t a t i c , s t e r i l e environments and (11) people denied p r e s e r v a t i o n of ICU Nurses and the B r a i n Dead P a t i e n t 148 l i f e . Of these meanings of d e p e r s o n a l i z a t i o n the f i r s t two are r e l e v a n t to the study's f i n d i n g s and w i l l now be d i s c u s s e d . The other meanings though p e r t i n e n t to the concept of d e p e r s o n a l i z a t i o n have a somewhat d i f f e r e n t c o nnotation i n that they r e f l e c t more the o v e r a l l e f f e c t s of the h e a l t h care system on the i n d i v i d u a l r a t h e r than a coping mechanism of nurses d e a l i n g with personal s t r e s s . " T h i n g i n g " means the person becomes an o b j e c t which l a c k s the c a p a c i t y f o r s u b j e c t i v e experience and t h i s o b j e c t i s done to as opposed to being a doer (Howard, 1972). T h i s form of d e p e r s o n a l i z a t i o n i s obvious i n the two f o l l o w i n g accounts. P. I t ' s j u s t a r e c e p t a c l e l y i n g t h e r e . A c o n t a i n e r . . . P. I t h i n k i t ' s a n o t h i n g . . . i t ' s not f u n c t i o n i n g we're doing a l l the work f o r i t . . . N o I don't thi n k of i t as anything. Except f o r something that I am m a i n t a i n i n g ah something l i k e a board or whatever. T h i s l a s t account a l s o h i n t s at.Howard's (1972) second meaning of dehumanization where due to technology the person becomes an extension of a machine. In a d d i t i o n , Howard i n d i c a t e s dehumanization by technology can a l s o occur through the h a r v e s t i n g and t r a n s p l a n t a t i o n of organs. The f o l l o w i n g account supports t h i s view. P. So i t ' s j u s t an academic mass t h a t ' s going to the OR then. These accounts a l s o support Beland's (1979, p. 199) d e f i n i t i o n of dehumanization which she sees as a process ICU Nurses and the B r a i n Dead P a t i e n t 149 "where the one person d i v e s t s the other of h i s human q u a l i t i e s . " However, she a l s o views dehumanization as "the p o s s i b l e r e s u l t of detachment but goes beyond emotional and p h y s i c a l s e p a r a t i o n to contempt" (1979, p. 200). I t i s at t h i s p o i n t that the f i n d i n g s do not s u b s t a n t i a t e Beland's p o i n t of view that the nurse passes adverse moral judgment upon the p a t i e n t . For i n s t a n c e , the p a r t i c i p a n t who r e f e r r e d to the b r a i n dead p a t i e n t as a "board" a l s o s t a t e s : P. I t r e a t them [the b r a i n dead p a t i e n t ] the same way as I would somebody that was awake...I'm s t i l l c a r i n g and I give them a l l the care that t h e y . . . t u r n them, give them mouth care and I t a l k to them even i f they can't hear. T h i s datum c l e a r l y i n d i c a t e s that d e p e r s o n a l i z a t i o n of the b r a i n dead p a t i e n t i s not a r e f l e c t i o n of the nurse's in n e r f e e l i n g s about the p a t i e n t . I t i s simply an attempt by the p a r t i c i p a n t to d i s t a n c e h e r s e l f i n order to deal with the s t r e s s created by the dissonant s i t u a t i o n of having to provide care and knowing the care w i l l not a f f e c t the p a t i e n t ' s u l t i m a t e d e s t i n y . T h i s same p a r t i c i p a n t i n d i c a t e s the f u t i l i t y and f r u s t r a t i o n found i n the p r o v i s i o n of care to the b r a i n dead p a t i e n t . P. Then maybe the worst t h i n g i s a c t u a l l y s h u t t i n g them o f f and saying that i s i t and there i s nothing more to be done. Another o p i n i o n on dehumanization i s held by Muldary (1983) who b e l i e v e s that p a t i e n t s are: "converted i n t o disease e n t i t i e s , devoid of humanity, and somehow synonymous with the a f f l i c t i o n s of t h e i r ICU Nurses and the B r a i n Dead P a t i e n t 150 bodies...One r e s u l t i s that they are then t r e a t e d as i f they d i d n ' t matter... Once we have dehumanized people -reduced them to subhuman or nonhuman e n t i t i e s - i t becomes much e a s i e r to j u s t i f y a c t i o n s on our p a r t s that may be harmful to them.(pp. 255 - 256) T h i s c o n v i c t i o n of Muldary provides an a l t e r n a t i v e r a t i o n a l e f o r the nurse d e p e r s o n a l i z i n g the b r a i n dead p a t i e n t . Suppose the nurse c a r i n g f o r the b r a i n dead p a t i e n t b e l i e v e s that c o n t i n u i n g to v e n t i l a t e and t r e a t the p a t i e n t i s "harmful" i n terms of being d i s r e s p e c t f u l to the person who once e x i s t e d or perhaps she b e l i e v e s that the h a r v e s t i n g of organs i s "harmful" to the b r a i n dead donor. Then dissonance i s c r e a t e d i n that her a c t i o n s are opposed to her personal b e l i e f s . However, by dehumanizing the p a t i e n t she can then j u s t i f y her a c t i o n s i n that the person no longer e x i s t s t h e r e f o r e her a c t i o n s are not construed as being harmful. T h i s r e s e a r c h d i d not s p e c i f i c a l l y address t h i s c o n c e p t u a l i z a t i o n of dehumanization. De s i g n a t i n g Another as the Target of Nursing Care Over the years there have been many d i s c u s s i o n s which sought to i d e n t i f y the essence of nursing - what i t i s and what i t i s not. P a r t of t h i s quest i s concerned with who i s the r e c i p i e n t of nursing care? N i g h t i n g a l e (1859) when d e s c r i b i n g the goal of n u r s i n g s a i d i t " i s to put the p a t i e n t i n the best c o n d i t i o n f o r nature to act upon him" (p. 75). Within her d e f i n i t i o n , N i g h t i n g a l e g i v e s ICU Nurses and the B r a i n Dead P a t i e n t 151 r e c o g n i t i o n to the p a t i e n t as the focus of nurse's a c t i o n s . But what i f the assigned p a t i e n t i s dead? How can t h i s p a t i e n t then be put i n the best c o n d i t i o n ? Henderson (1980) i n an address on p r e s e r v i n g the essence of nursing i n the face of advancing technology r e i n s t a t e d her b e l i e f that the unique f u n c t i o n of n u r s i n g i s "to help persons, s i c k or w e l l , from b i r t h to death, with those a c t i v i t i e s of d a i l y l i v i n g . . . t o gain or r e g a i n t h e i r independence... to cope with handicaps and i r r e v e r s i b l e d i s e a s e . . . t o die with d i g n i t y when death i s i n e v i t a b l e (p. 246). T h i s statement not only i d e n t i f i e s the t a r g e t of n u r s i n g care as a l i v i n g person but a l s o i n d i c a t e s that n u r s i n g stops with death. L e i n i n g e r (1984) i n d i c a t e s that nursing focuses on "promoting and m a i n t a i n i n g h e a l t h behaviors or recovery from i l l n e s s which have p h y s i c a l , p s y c h o c u l t u r a l , and s o c i a l s i g n i f i c a n c e or meaning to those being a s s i s t e d " (p. 5). Obviously by t h i s d e f i n i t i o n the b r a i n dead p a t i e n t does not q u a l i f y as a r e c i p i e n t of n u r s i n g care. L i k e these n u r s i n g s c h o l a r s , t h i s study's p a r t i c i p a n t s with the exception of one nurse a r t i c u l a t e a concept of nursing that r e v o l v e s around a l i v i n g human being. When care i s provided to an i n d i v i d u a l who no longer has the c a p a c i t y f o r l i f e then dissonance i s present. A manner by which the p r o v i s i o n of n u r s i n g care may become congruent with the c o n c e p t u a l i z a t i o n of n u r s i n g i s to designate ICU Nurses and the B r a i n Dead P a t i e n t 152 another, that i s , a t h i r d i n d i v i d u a l , a l i v i n g i n d i v i d u a l , as the t a r g e t of n u r s i n g a c t i o n s . As evidenced by the p a r t i c i p a n t s ' accounts t h i s t h i r d person may be the f a m i l y , the t r a n s p l a n t r e c i p i e n t , or even the nurse h e r s e l f . The f a m i l y as the r e c i p i e n t of nursing care In the h o s p i t a l s e t t i n g the f a m i l y , though taken i n t o c o n s i d e r a t i o n when planning n u r s i n g care, i s i n many ways p e r i p h e r a l to the s i t u a t i o n . Travelbee (1971) views the f a m i l y as an extension of the p a t i e n t i n that h e l p i n g the f a m i l y thereby i n d i r e c t l y a s s i s t s the p a t i e n t . The needs of f a m i l i e s of dying or b r a i n dead p a t i e n t and how nurses can respond to these needs are w e l l addressed i n the l i t e r a t u r e (Goldsmith & Montefusco, 1985; Kozlowski, 1988; McCorkle, 1982; Weber, 1985). However, very l i t t l e i s known about how i n t e n s i v e care u n i t nurses view t h e i r r o l e with the p a t i e n t ' s f a m i l y . As part of a d e s c r i p t i v e study to explore the r e l a t i o n s h i p s between c r i t i c a l care nurses and f a m i l i e s from the p e r s p e c t i v e of the nurse, Hickey and Lewandowski (1988) d i s t r i b u t e d a q u e s t i o n n a i r e to nurses i n 18 c r i t i c a l care u n i t s . Out of a convenience sample of 275 c r i t i c a l care nurses, 226 (82%) returned the q u e s t i o n n a i r e . The respondents represented eleven d i f f e r e n t types of a d u l t and p e d i a t r i c c r i t i c a l care u n i t s . I t can be assumed that some of the nurses had experience with the b r a i n dead p a t i e n t and ICU Nurses and the B r a i n Dead P a t i e n t 153 h i s f a m i l y , as 10% of the u n i t s were m e d i c a l - s u r g i c a l and 11% were n e u r o l o g i c a l - n e u r o s u r g i c a l . One q u e s t i o n the authors sought to answer was: "How do c r i t i c a l care nurses view t h e i r own r o l e s with f a m i l i e s of c r i t i c a l l y i l l p a t i e n t s ? " (Hickey & Lewandowski, 1988, p. 670). T h i s q u e s t i o n used a L i k e r t s c a l e which i n c l u d e d 16 statements r e l a t e d to the n u r s e - f a m i l y r e l a t i o n s h i p . Though a m a j o r i t y of the respondents (77%) i n d i c a t e d that i t was e m o t i o n a l l y exhausting to become i n v o l v e d with the f a m i l i e s , 86% responded they would s t i l l become i n v o l v e d with f a m i l y members. Only 38% " d i d not b e l i e v e that i t was r e a l i s t i c to expect s t a f f c r i t i c a l nurses to care f o r the emotional needs of the f a m i l y of the c r i t i c a l l y i l l p a t i e n t " (Hickey & Lewandowski, 1988, p. 672). Though Hickey's and Lewandowski's study does not s t a t e that the f a m i l y , as opposed to the p a t i e n t , i s the t a r g e t of n u r s i n g care, the f i n d i n g that the m a j o r i t y of nurses do become i n v o l v e d with the f a m i l y i s considered important. The f a c t that the m a j o r i t y of c r i t i c a l care nurses are a l r e a d y nursing the f a m i l y provides i n s i g h t i n t o how the f a m i l y can e a s i l y become the center of nursing care when the assigned p a t i e n t i s dead. The t r a n s p l a n t r e c i p i e n t as the t a r g e t of care Youngner (1985) s t a t e s " t r a n s p l a n t a t i o n provides an o p p o r t u n i t y to turn a personal and f a m i l i a l tragedy i n t o a marvelous g i f t of l i f e f o r o t h e r s . I t i s a unique way to ICU Nurses and the Brain Dead Patient 154 affirm and share our humanity" (p. 322 - 323). For some participants to be able to designate the transplant recipient as the target of their nursing care provides them with a goal for their care and personal rewards in knowing that they are helping to benefit another. In Sophie's et al. (1983) study 86.8% of the respondents indicate that they approve of organ donation and of these 76.7% cite the benefit of transplantation, that is, the knowledge that donation would provide the recipient with hope as the factor which led to their support. Nursing the nurse Pines, Aronson, and Kafry (1981) reflect that while most human relationships have a give and take component, health care relationships possess a client-centered orientation in that the health care worker gives and the patient receives. Benner and Wrubel (1989) question the need for caring relationships to be totally altruistic: However, in a phenomenological view of the person, in which the person is viewed as related to others and defined by those relationships, concern for others is not necessarily oppositional to or competitive with self-interest. Concern for others may bring about mutual realization. Caring for others contributes to a world where one can care and expect to be cared for (p. 367). ICU Nurses and the B r a i n Dead P a t i e n t 155 Indeed a few of t h i s study's p a r t i c i p a n t s i n d i c a t e that the b a s i c n u r s i n g care a c t i v i t i e s they provide f o r the b r a i n dead p a t i e n t are i n r e a l i t y done f o r themselves. To make themselves f e e l good or even sometimes maintain t h e i r own sense of humanism. These f i n d i n g s are c o n s i s t e n t with those reported by Larson (1987) who i n d i c a t e s that 3% of the d i s c l o s u r e s provided by nurses " c o n t a i n d i r e c t e xpressions of a d e s i r e to r e c e i v e - as w e l l as to g i v e " (p. 22). The need f o r nurses to care f o r themselves i s w e l l recognized i n the l i t e r a t u r e on burn-out (Beland, 1979; Muldary, 1983; Pines, 1981). Muldary (1983) s t r e s s e s that h e a l t h care p r o f e s s i o n a l s "must care f o r t h e i r own needs and those of t h e i r c o l l e a g u e s as they would care f o r the needs of h e a l t h care r e c i p i e n t s " (p. v i i i ) . Beland (1979) contends that more a t t e n t i o n should be given "to ways of p r o t e c t i n g and r e s t o r i n g one's own emotional balance. The nurse must meet her own needs..." (p. 200). Summary Within t h i s chapter the f i n d i n g s of the study are d i s c u s s e d i n r e l a t i o n to the p e r t i n e n t l i t e r a t u r e . As t h i s process evolved i t became apparent that there i s l i m i t e d i n f o r m a t i o n a v a i l a b l e on dissonance with regard to n u r s i n g . Though t h i s study's concept of p e r s o n a l dissonance corresponds to F e s t i n g e r ' s theory of c o g n i t i v e dissonance, only one study a p p l y i n g t h i s theory to nursing was uncovered. As a consequence there was a review of the ICU Nurses and the B r a i n Dead P a t i e n t 156 l i t e r a t u r e on death and dying and a l s o the l i m i t e d number of s t u d i e s and anecdotal r e p o r t s on b r a i n death. From t h i s review i t became apparent that there i s r e f e r e n c e s made to the nurse e x p e r i e n c i n g i n t e r n a l c o n f l i c t s when p r o v i d i n g care to the dying or to the b r a i n dead p a t i e n t . As t h i s r e s e a r c h e r coined the term ' i n t e r p e r s o n a l dissonance' i t was not expected to be found w i t h i n the e x i s t i n g l i t e r a t u r e . However, w r i t i n g s on 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 and e t h i c a l i s s u e s d i d allow the r e s e a r c h e r to make i n f e r e n c e s which r e l a t e d the study's f i n d i n g s to concepts w i t h i n the l i t e r a t u r e . The r e l a t i v e abundance of l i t e r a t u r e on d i s t a n c i n g permitted an in-depth comparison of t h i s study's f i n d i n g s with the works of o t h e r s . Many of the statements made are f e l t to be a p p l i c a b l e to the f i n d i n g s . However, not a l l that i s w r i t t e n on d i s t a n c i n g i s f e l t to be r e l e v a n t to the p a r t i c i p a n t ' s experience of c a r i n g f o r a b r a i n dead p a t i e n t . For i n s t a n c e , the views that d i s t a n c i n g may lead to harm to the p a t i e n t or that d e p e r s o n a l i z a t i o n of the p a t i e n t i s i n r e a l i t y contempt are not s u b s t a n t i a t e d by the study's f i n d i n g s . The important d i f f e r e n c e with regard to the l i t e r a t u r e and the f i n d i n g s i s that the former i s f o c u s i n g on l i v i n g p a t i e n t s , whereas, the l a t t e r i s concerned with the dead. The l i t e r a t u r e was sparse re g a r d i n g the concept of d e s i g n a t i n g a t h i r d party as the r e c i p i e n t of n u r s i n g c a r e . ICU Nurses and the B r a i n Dead P a t i e n t 157 B e l i e f s of a few e x p e r t n urses add c r e d i b i l i t y to the e x i s t e n c e of d i s s o n a n c e when the p h i l o s o p h y of n u r s i n g does not f i t w i t h the r e c i p i e n t of c a r e . The importance of the f a m i l y to c r i t i c a l c a r e n u r s e s , the concept of the ' g i f t of l i f e ' , and the r e c o g n i t i o n t h a t p r o f e s s i o n a l s need to meet t h e i r own needs p r o v i d e s i n s i g h t as to why the nurse s e l e c t s the f a m i l y , t r a n s p l a n t r e c i p i e n t and h e r s e l f as the a l t e r n a t i v e r e c i p i e n t s of n u r s i n g c a r e . There are s e v e r a l c o n t r i b u t i o n s t h a t t h i s s tudy makes to e x i s t i n g knowledge. F i r s t , t h i s study c o n t r i b u t e s to the knowledge of how n urses d e a l w i t h i n c o n s i s t e n c i e s . From t h i s p o i n t of view the s t u d y ' s f i n d i n g s a l s o c o n t r i b u t e to the p r a g m a t i c i s s u e of d i s s o n a n c e . Second, the study p r o v i d e s a framework f o r s t u d y i n g p e r s o n a l and i n t e r p e r s o n a l c o n f l i c t s which may be a p p l i c a b l e to o t h e r a r e a s of n u r s i n g . T h i r d , the f i n d i n g s enhance the l i t e r a t u r e on death and d y i n g by f i l l i n g a v o i d i n e x i s t i n g knowledge. F o u r t h , the study p r o v i d e s a d i f f e r e n t p e r s p e c t i v e f o r v i e w i n g d i s t a n c i n g t a c t i c s . F i n a l l y , the f i n d i n g s r e g a r d i n g the d i s s o n a n c e a s s o c i a t e d w i t h the p h i l o s o p h y of what n u r s i n g i s and the r e c i p i e n t of c a r e s u p p l i e s a f u r t h e r fund of i n f o r m a t i o n to be c o n s i d e r e d when d e v e l o p i n g n u r s i n g t h e o r i e s . ICU Nurses and the Brain Dead Patient 158 CHAPTER 6: SUMMARY, CONCLUSIONS AND IMPLICATIONS FOR NURSING In this chapter the study will be summarized and the conclusions arising from the findings will be presented. In addition, the implications for nursing practice, education and research will be delineated. Summary of the Study Advances in biomedical technology have resulted in the ability to artificially maintain 'life' independent of brain function and the creation of a new category of dead patients - the brain dead. The continuing drawn-out existence of these brain dead patients in intensive care units is related to a reluctance by lay populations to accept brain death as being synonymous with death (Klein, 1982), the subsequent hesitancy by physicians to withdraw treatment (Black & Zervas, 1984), and the unrelenting medical demand for transplantable viable organs from heart beating cadavers (West 1986, Youngner et al. , 1985). The consequence is that nurses who were once solely concerned with the administration of care to the living and the dying are called upon to provide care to dead patients. Pertinent findings from the literature indicate that nurses working in intensive care units have a strong commitment to saving life (Goldsmith & Montefusco, 1985; Sophie et al. , 1983) and a resultant difficulty accepting death and view it as a personal loss and failure (Caughill, ICU Nurses and the Brain Dead Patient 159 1976; Goldsmith & Montefusco, 1985; Lippincott, 1979; Quint, 1966; Sophie et al. , 1983). Though there is a scarcity of information related to the experience of providing care to the brain dead patient, there is an indication that nurses find the care emotionally and physically demanding (Borozny, 1988; Sophie et al. , 1983). In addition, a recent study by Youngner et al. (1989) indicates that health care professionals have a lack of conceptual clarity regarding brain death. These few findings and the overall dearth of information on the subjective perceptions of nurses providing care to the brain dead patient indicate a need to study this phenomenon from the perspective of the intensive care unit nurse in order to f i l l a void in our existing knowledge. Phenomenology was the research method selected for this study. Because the intent of this research method is to understand the experience as it is lived (Anderson, 1989; Knaack, 1984; Lynch-Sauer, 1985; Oiler, 1982; Oiler, 1986; Omery, 1983), it was considered to be the most appropriate methodology for determining the meaning intensive care unit nurses attach to their caring for the brain dead patient. The eleven Caucasian female participants of this study work in the intensive care units of a tertiary and a quarternary care hospital within the greater Vancouver area. They ranged in age from the twenties to the forties. They represented five religious denominations and one indicated ICU Nurses and the Brain Dead Patient 160 she had no r e l i g i o u s a f f i l i a t i o n . One nurse had cared for between two to f i v e brain dead patients, four nurses had provided care for six to ten brain dead patients, and six nurses had cared for more than ten brain dead patients. A l l participants were interviewed twice and six were involved i n t h i r d interviews to validate the researcher's analysis of the data. Data analysis was both a r e f l e c t i v e and i n t e r a c t i v e process. From each transcribed interview the researcher delineated meaning units which were organized into clusters of themes. An in-depth comparative analysis of the interviews, the derived meaning units, and themes resulted in an exhaustive description of the experience of caring for the brain dead patient. Confirmation was then sought from the participants as to the accuracy of the description. As a result of the participants substantiating the researcher's findings, the description constitutes the essential structure of providing care to the brain dead patient. Throughout the participants' accounts dissonance i s the pervasive and unifying theme. The dissonance in the form of either personal or interpersonal discord results in personal distress and subsequent attempts to reduce the dissonance by distancing and/or designating another as the target of nursing care. Personal dissonance occurs in one or more of f i v e areas. These relate to the participant's philosophy about ICU Nurses and the B r a i n Dead P a t i e n t 161 n u r s i n g , to t r a d i t i o n a l n ursing care a c t i v i t i e s , to the concept of b r a i n death, to organ r e t r i e v a l and t r a n s p l a n t a t i o n , and to p r o f e s s i o n a l r e s p o n s i b i l i t i e s and the nurse's own emotional needs. In c o n t r a s t , i n t e r p e r s o n a l dissonance occurs between the nurse and f a m i l i e s , p h y s i c i a n s , the PORT Team and her own nursing c o l l e a g u e s . The presence of personal or i n t e r p e r s o n a l dissonance produces s u b j e c t i v e t e n s i o n which the p a r t i c i p a n t s d e s c r i b e using terms such as f r u s t r a t e d , f e e l i n g r o t t e n , being very d r a i n e d , being " p i s s e d o f f " , being annoyed and being a f r a i d . The e x i s t e n c e of t h i s personal d i s t r e s s r e s u l t s i n a need to reduce the amount of dissonance which the p a r t i c i p a n t i s e x p e r i e n c i n g . The dissonance i s reduced by d i s t a n c i n g or the d e s i g n a t i o n of a t h i r d party as the t a r g e t of n u r s i n g care. The former may i n v o l v e e i t h e r emotional detachment from the p a t i e n t or a d e p e r s o n a l i z a t i o n of the p a t i e n t . In the l a t t e r , the p a t i e n t no longer i s the reason f o r n u r s i n g a c t i v i t i e s . Instead, the p a t i e n t ' s f a m i l y , the unknown t r a n s p l a n t r e c i p i e n t or even the nurse h e r s e l f becomes the r a t i o n a l e f o r p r o v i d i n g care. Conclusions The f i n d i n g s of t h i s study confirm the view i n the l i t e r a t u r e that c a r i n g f o r the b r a i n dead p a t i e n t i s an e m o t i o n a l l y laden process. T h i s personal d i s t r e s s i s d i r e c t l y r e l a t e d to two sources of i n c o n s i s t e n c i e s . F i r s t , ICU Nurses and the Brain Dead Patient 162 the nurse may possess coexisting beliefs, perceptions, values, opinions, knowledge and actions which are discrepant. Second, the nurse's personal values, knowledge, and behaviours may be in direct opposition to those of her nursing and medical colleagues and those of the family. However, no matter what the source of the dissonance, its existence creates turmoil and makes the care of the brain dead patient and the patient's family challenging. Implications for Nursing The findings of this study have implications for nursing in the areas of practice, education and research. Implications for Nursing Practice The findings of this study lead to a number of important implications for nursing practice. These are significant not only for the nurses who provide the care to the brain dead patient but also to nursing and hospital administrators, professional associations, and transplantation programs. The need to care for the nurse is recognized in the literature (Beland, 1979; Muldary, 1983; Pines et al. , 1981) and is a finding of this study. The cognitive and interpersonal dissonance the intensive care unit nurse experiences makes the care of the brain dead patient extremely difficult. Her only support comes from within herself and her colleagues, however, even this support may be difficult if she is feeling at odds with herself or with ICU Nurses and the B r a i n Dead P a t i e n t 163 her c o l l e a g u e s . One i m p l i c a t i o n of t h i s study i s f o r h o s p i t a l s and p r o f e s s i o n a l a s s o c i a t i o n s to g i v e r e c o g n i t i o n to t h i s need. W i t h i n the h o s p i t a l t h e r e c o u l d be the e s t a b l i s h m e n t of a c l i n i c a l nurse s p e c i a l i s t (CNS) p o s i t i o n to a s s i s t the nurse who i s p r o v i d i n g the c a r e to the b r a i n dead p a t i e n t . For t h i s s p e c i a l i s t to f u l l y comprehend the needs of the i n t e n s i v e c a r e u n i t n u r s e , she must have p r i o r e x p e r i e n c e i n c a r i n g f o r the b r a i n dead p a t i e n t and f a m i l y . E x p e r t i s e i n c o u n s e l l i n g and communication s k i l l s would be another r e q u i r e m e n t . To promote 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 the p o s i t i o n would have to be c l o s e l y l i n k e d not o n l y t o the i n t e n s i v e c a r e u n i t , but a l s o n u r s i n g a d m i n i s t r a t i o n and the t r a n s p l a n t a t i o n program. When a b r a i n dead p a t i e n t or a p a t i e n t w i t h the p o t e n t i a l of b e i n g b r a i n dead i s a d m i t t e d to the i n t e n s i v e c a r e u n i t the c l i n i c a l nurse s p e c i a l i s t would be n o t i f i e d . She would then meet w i t h the nurse who i s p r o v i d i n g the c a r e and seek her d i r e c t i o n from t h a t n u r s e . That i s , the c a r e g i v e r would i n d i c a t e what her needs a r e , whether i t be h e l p w i t h the p h y s i c a l c a r e of the p a t i e n t , h e l p w i t h s u p p o r t i n g the f a m i l y , or s i m p l y meeting a need to t a l k or take a break or n o t h i n g a t a l l . The need f o r such a p o s i t i o n i s a p p a r e n t . W i t h i n the h o s p i t a l systems t h e r e are n u r s i n g p o s i t i o n s , such as the Nephrology CNS or the T r a n s p l a n t CNS, who f o c u s on the needs of the r e c i p i e n t and h i s f a m i l y . In a d d i t i o n , PORT p r o v i d e s ICU Nurses and the B r a i n Dead P a t i e n t 164 c o o r d i n a t o r s to r e t r i e v e organs and other c o o r d i n a t o r s to deal with the needs of the r e c i p i e n t and f a m i l y . Meeting the needs of the b r a i n dead p a t i e n t and h i s f a m i l y i s l e f t to the i n t e n s i v e care u n i t nurses who may be l a b o u r i n g with personal and i n t e r p e r s o n a l i n c o n g r u i t i e s . The r e s u l t i s that resources are skewed to the t r a n s p l a n t a t i o n end and the nurse, whether she i s c a r i n g f o r a b r a i n dead p a t i e n t who w i l l or w i l l not be an organ donor, i s a f o r g o t t e n but v i t a l l i n k i n t h i s spectrum of b r a i n death. The p r o v i n c i a l n u r s i n g a s s o c i a t i o n s must look at ways of meeting the needs of these nurses. Though both the Canadian Nurses A s s o c i a t i o n (1987) and the R e g i s t e r e d Nurses A s s o c i a t i o n of B r i t i s h Columbia (1988) have p o s i t i o n statements on organ t r a n s p l a n t a t i o n , the emphasis i s on organ r e t r i e v a l and t r a n s p l a n t a t i o n . I t must be recognized by h o s p i t a l s and p r o f e s s i o n a l a s s o c i a t i o n s that though the b r a i n dead p a t i e n t i s c e n t r a l to the success of s o l i d organ t r a n s p l a n t a t i o n programs, these programs are not p i v o t a l to the e x i s t e n c e of b r a i n dead p a t i e n t s . These p a t i e n t s e x i s t with or without t r a n s p l a n t a t i o n and only a small percentage of them a c t u a l l y do become donors (West 1986, Youngner et a l . , 1985). The f i n d i n g s of t h i s study r e v e a l that the nurses experience dissonance when c a r i n g f o r donor and nondonor b r a i n dead p a t i e n t s . The p o s i t i o n statements of the n a t i o n a l and p r o v i n c i a l a s s o c i a t i o n s c a l l f o r h e a l t h care f a c i l i t i e s to provide ICU Nurses and the B r a i n Dead P a t i e n t 165 support programs f o r nurses. However, these p r o f e s s i o n a l a s s o c i a t i o n s should play an a c t i v e r o l e i n determining the kind of support programs needed. A task f o r c e could be set up to address t h i s i s s u e . Another i m p l i c a t i o n of the study's f i n d i n g s i s a need to e s t a b l i s h m u l t i d i s c i p l i n a r y forums to improve communication between nurses, p h y s i c i a n s and the PORT Team. These forums should promote the f r e e exchange of b e l i e f s , v a l u e s , o p i n i o n s and knowledge i n order to promote i n c r e a s e d understanding and r e c o g n i t i o n of a l l members' p o i n t s of view and r e s p o n s i b i l i t i e s . Through reviews of p a t i e n t cases at these meetings, p h y s i c i a n s and the PORT Team could become aware of the i n t e r n a l and e x t e r n a l t u r m o i l nurses experience when c a r i n g f o r the b r a i n dead p a t i e n t and h i s f a m i l y . C o l l a b o r a t i v e e f f o r t s could then be i n i t i a t e d to r e s o l v e the c o n f l i c t s . The f i n d i n g s of t h i s study a l s o r e v e a l that the nurse experiences i n t e r n a l and e x t e r n a l d i s c o r d with i s s u e s r e l a t e d to the concept of death, and i n t e r a c t i o n s with the p a t i e n t ' s f a m i l y . T h i s leads to another i m p l i c a t i o n f o r nursing p r a c t i c e which i s the p r o v i s i o n of seminars emphasizing e t h i c a l , p h i l o s o p h i c a l and biomedical i s s u e s r e l a t e d to death and a l s o the c o u n s e l l i n g of bereaved f a m i l y members. ICU Nurses and the B r a i n Dead P a t i e n t 166 I m p l i c a t i o n s f o r Nursing Education The f i n d i n g s of the study a l s o c o n t a i n i m p l i c a t i o n s f o r nursing e d u c a t i o n . One i m p l i c a t i o n i s that education w i t h i n nursing should prepare nurses to handle s i t u a t i o n s where t h e i r p e r s o n a l b e l i e f s , v a l u e s , o p i n i o n s , knowledge or behaviours may be i n o p p o s i t i o n to those of other h e a l t h care p r o v i d e r s , i n c l u d i n g n ursing c o l l e a g u e s , or even those to whom care i s being p r o v i d e d . I t i s important f o r nurses to recognize the source of the dissonance and to be knowledgeable about e f f e c t i v e i n t e r v e n t i o n s . T h e r e f o r e , n u r s i n g education should i n c l u d e s e s s i o n s on i n t e r p e r s o n a l dynamics and s t r a t e g i e s f o r c o n f l i c t r e s o l u t i o n . A d d i t i o n a l l y , to promote a g r e a t e r understanding among h e a l t h care p r o v i d e r s there should be m u l t i d i s c i p l i n a r y s e s s i o n s which allow f o r d i s c u s s i o n of h e a l t h care i s s u e s and r o l e s w i t h i n the h e a l t h care system. The r e s u l t s of t h i s study provide evidence that the d i s c o r d some nurses experience i s r e l a t e d to i s s u e s surrounding the prolonging of v i t a l f u n c t i o n s , the performance of cardiopulmonary r e s u s c i t a t i o n on a dead p a t i e n t and organ t r a n s p l a n t a t i o n . These dilemmas are e t h i c a l i n nature and demand a grea t e r awareness of e t h i c s by nurses. Education r e g a r d i n g e t h i c s should focus not only on these s p e c i f i c i s s u e s but provide the nurse with a framework f o r viewing and r e s o l v i n g f o r themselves e t h i c a l problems. ICU Nurses and the B r a i n Dead P a t i e n t 167 The study's f i n d i n g s give evidence of c o n f u s i o n surrounding the c o n c e p t u a l i z a t i o n of death and the management of the dead and t h e i r f a m i l i e s . T h e r e f o r e , a major i m p l i c a t i o n of the f i n d i n g s i s the r e c o g n i t i o n of the need f o r strong e d u c a t i o n a l p r e p a r a t i o n i n the meaning and s i g n i f i c a n c e of death. Nurses need to recognize that death and b r a i n death are synonymous. They need an a p p r e c i a t i o n of death from a p h i l o s o p h i c a l , e t h i c a l , r e l i g i o u s , l e g a l and b i o m e d i c a l p e r s p e c t i v e . Nursing students must be provided with a framework f o r viewing not only t h e i r own r e a c t i o n s to death but a l s o those of other h e a l t h care p r o f e s s i o n a l s and f a m i l y members. There must e x i s t r e c o g n i t i o n of the l e g i t i m a c y of personal d i s t r e s s and the need f o r support not only f o r the f a m i l y but a l s o f o r the nurse. A c c o r d i n g l y , p r e p a r a t i o n i s r e q u i r e d w i t h i n n u r s i n g education to a s s i s t the nurse to support h e r s e l f as w e l l as f a m i l i e s . H o s p i t a l o r i e n t a t i o n and i n s e r v i c e programs f o r nurses employed i n i n t e n s i v e care u n i t s need to i n c o r p o r a t e s e s s i o n s on the b r a i n dead p a t i e n t . These programs must address not only the l e g a l and biomedical i s s u e s of b r a i n death but a l s o the question of what i s a p p r o p r i a t e and i n a p p r o p r i a t e p r a c t i c e f o r the care of the b r a i n dead p a t i e n t . Nursing education w i t h i n the schools and the h o s p i t a l s can provide the nurse with a t h e o r e t i c a l framework which she can then be apply to her n u r s i n g care of the b r a i n dead ICU Nurses and the B r a i n Dead P a t i e n t 168 p a t i e n t and h i s f a m i l y . Through education the nurse can be b e t t e r prepared to manage the p e r s o n a l and i n t e r p e r s o n a l dissonance a s s o c i a t e d with c a r i n g f o r the b r a i n dead p a t i e n t . I m p l i c a t i o n s f o r Nursing Research A number of i m p l i c a t i o n s f o r n u r s i n g r e s e a r c h a r i s e from the l i m i t a t i o n s of t h i s study. F i r s t , the study i n v o l v e d i n t e n s i v e care u n i t nurses who worked at one of two l a r g e m e t r o p o l i t a n h o s p i t a l s , t h e r e f o r e there i s a need to determine i f t h e i r experience of c a r i n g f o r the b r a i n dead p a t i e n t i s c o n s i s t e n t with the experience of nurses who work i n s m a l l e r community h o s p i t a l s . Second, the p a r t i c i p a n t s of t h i s study were p r i m a r i l y i n v o l v e d with a d u l t b r a i n dead p a t i e n t s . Consequently, there s t i l l e x i s t s a l a c k of knowledge with r e s p e c t to understanding the s u b j e c t i v e p e r s p e c t i v e of p e d i a t r i c i n t e n s i v e care u n i t nurses. T h i r d , the e s s e n t i a l s t r u c t u r e of the experience of nurses ma i n t a i n i n g a b r a i n dead p a t i e n t may not r e f l e c t the meaning o p e r a t i n g room nurses a t t a c h to care of the b r a i n dead organ donor. Furt h e r r e s e a r c h i n these three areas would r e s u l t i n a more g l o b a l p i c t u r e of the experience of p r o v i d i n g care to b r a i n dead p a t i e n t s and have f u r t h e r i m p l i c a t i o n s f o r n u r s i n g p r a c t i c e and education. In a d d i t i o n , the study's f i n d i n g s r e l a t e d to i n t e r p e r s o n a l dissonance serve as a reminder that the nurse i s not f u n c t i o n i n g i n i s o l a t i o n . She i s i n t e r a c t i n g with ICU Nurses and the B r a i n Dead P a t i e n t 169 other nursing c o l l e a g u e s , p h y s i c i a n s , members of the t r a n s p l a n t team and f a m i l i e s . Thus w i t h i n the i n t e n s i v e care u n i t , these i n d i v i d u a l s form a s u b c u l t u r a l group with behaviours that are "context r e l a t e d " (Munhall & O i l e r , 1986, p. 145). Research designed to study the dynamics of t h i s s u b c u l t u r e could provide v a l u a b l e i n f o r m a t i o n on the phenomenon of b r a i n death and nursing's r o l e i n c a r i n g f o r the b r a i n dead p a t i e n t . F i n a l l y , the e x i s t e n c e of pers o n a l dissonance o c c u r r i n g i n r e l a t i o n to the nurse's philosophy of nursing and the p r o v i s i o n of care to a dead p a t i e n t has i m p l i c a t i o n s f o r nurs i n g t h e o r i s t s as they attempt to d e f i n e nursing's unique f u n c t i o n . In today's world a theory that does not take i n t o c o n s i d e r a t i o n the involvement of nurses with the dead w i l l not only be incomplete but w i l l c o n t r i b u t e to the dissonance experienced at the bedside. Summary T h i s phenomenological r e s e a r c h study sought to determine from the p e r s p e c t i v e of the nurse the meaning attached to c a r i n g f o r the b r a i n dead p a t i e n t . The f i n d i n g s i n d i c a t e that the u n i f y i n g theme f o r t h i s experience was one of dissonance, which r e s u l t s i n pers o n a l d i s t r e s s and subsequent attempts to reduce the dissonance by d i s t a n c i n g and/or d e l e g a t i n g another as the r e c i p i e n t of nur s i n g c a r e . From the f i n d i n g s i m p l i c a t i o n s f o r nur s i n g p r a c t i c e , education and resea r c h are d e r i v e d . The f i n d i n g s and ICU Nurses and the B r a i n Dead P a t i e n t 170 i m p l i c a t i o n s are s i g n i f i c a n t not only to nurses who a c t u a l l y provide care to the b r a i n dead p a t i e n t but a l s o to nurse a d m i n i s t r a t o r s , educators, and other nurse p r a c t i t i o n e r s . Even the community h e a l t h nurse who may be i n v o l v e d with the b r a i n dead p a t i e n t ' s f a m i l y may b e n e f i t from these f i n d i n g s . 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B e h a v i o u r a l Concepts and the C r i t i c a l l y 111 P a t i e n t (pp276 - 297). Norwalk: A p p l e t o n - C e n t u r y - C r o f t s . Ropper, A. (1984). Unusual spontaneous movements i n b r a i n dead p a t i e n t s . Neurology, 34, 1089 - 1092. ICU Nurses and the B r a i n Dead P a t i e n t 184 Selby, R. (1985). The medical determination of death. In R. H. W i l k i n s & S. S. Rengachy ( E d s . ) , Neurosurgery ( V o l . 3, pp. 2585 - 2597). New York: McGraw-Hill Book Company. Sheard, T. (1980). The s t r u c t u r e of c o n f l i c t i n nurse-p h y s i c i a n r e l a t i o n s . S u p e r v i s o r Nurse. 11/8), 14 - 15, 17 - 18. S i n a c o r e , J . M., (1981). Avoiding the humanistic aspect of death: An outcome from the i m p l i c i t elements of h e a l t h p r o f e s s i o n s education. Death Education, 5(2), 121 - 133. Sophie, L. R., Salloway, J . C , Sorock, G., Volek, P., & Merkel, F. K., (1983). I n t e n s i v e care nurses' p e r c e p t i o n s of cadaver organ procurement. Heart and Lung, JJ2(3), 262 -267. S t e h l e , J . L., (1981). C r i t i c a l care nursing s t r e s s : The f i n d i n g s r e v i s i t e d . Nursing Research, _3_0(3), 182 - 186. S u l l i v a n , P. (1988). Report r a i s e s questions about cost of organ t r a n s p l a n t a t i o n . Canadian Medical A s s o c i a t i o n J o u r n a l , 139, 433 - 434. Sweezy, S. R., (1983). The e t h i c a l i s s u e of informed consent i n human experimentation. In C. P. Murphy & H. Hunter,, ( E d s . ) . E t h i c a l Problems i n the Nurse-Patient R e l a t i o n s h i p . Boston: A l l y n and Bacon, Inc. T o f f l e r , A. (1970). Future Shock. New York: Random House. Travelbee, J . , (1971). I n t e r p e r s o n a l Aspects of Nursing. P h i l a d e l p h i a : F. A. Davis Company. ICU Nurses and the B r a i n Dead P a t i e n t 185 Walker, E. A., (1979). Advances i n the determination of c e r e b r a l death. In R. A. Thompson & J . R. Green ( E d s . ) , Advances i n neurology: V o l . 22 Complications of nervous  system trauma (pp.167 - 177). New York: Raven P r e s s . Walker, E. A., (1985). C e r e b r a l Death, B a l t i m o r e : Urban & Schwarzenberg. Weber, P., (1985). The human connection: The r o l e of the nurse i n organ donation. J o u r n a l of N e u r o s u r g i c a l Nursing, 17.(2), 119 - 122. West, J . C , K e l l e y , S. E., Campbell, P., Burns-Morrison, B., & Zimmerman, K. A. (1986). Philosophy and f i n a n c i n g of organ t r a n s p l a n t s . Pennsylvania Medicine, 89, 22,26. Wikler, D., & Weisbard, A. J . , (1989). A p p r o p r i a t e c o n f u s i o n over 'brain death'. JAMA, 2_61(15), 2246. Youngner, S. J . , A l l e n , M., B a r t l e t t , E. T., C a s c o r b i , H. F., Hau, T., Jackson, D. L., Mahowals, M. B., & M a r t i n , B. J . , (1985). P s y c h o s o c i a l and e t h i c a l i m p l i c a t i o n s of organ r e t r i e v a l . The New England J o u r n a l of Medicine, 313(5), 321 - 324. Youngner, S. J . , L a n d e f e l d , S., Coulton, C. J . , J u k n i a l i s , B. W., & Leary, M. (1989). 'Brain death' and organ r e t r i e v a l A c r o s s - s e c t i o n a l survey of knowledge and concepts among h e a l t h p r o f e s s i o n a l s . JAMA, 261(15), 2205 -2210. ICU Nurses and the B r a i n Dead P a t i e n t 186 Appendices ICU Nurses and the Brain Dead Patient 187 Appendix A C e r t i f i c a t e of Approval for the Study ICU Nurses and the B r a i n Dead P a t i e n t 189 Appendix B L e t t e r of I n f o r m a t i o n ICU Nurses and the B r a i n Dead P a t i e n t 190 L e t t e r of I n f o r m a t i o n f o r Research Study: The E x p e r i e n c e s of I n t e n s i v e Care U n i t Nurses P r o v i d i n g Care to The A d u l t B r a i n Dead P a t i e n t I am a r e g i s t e r e d nurse working towards a master's degree i n n u r s i n g at the U n i v e r s i t y of B r i t i s h Columbia. For my t h e s i s , I am c o n d u c t i n g a study t o g a i n an u n d e r s t a n d i n g of the e x p e r i e n c e of i n t e n s i v e c a r e n u r s e s who p r o v i d e c a r e to the a d u l t b r a i n dead p a t i e n t . I hope the f i n d i n g s of the study w i l l be v a l u a b l e f o r n u r s i n g by h e i g h t e n i n g the awareness about n u r s e s ' e x p e r i e n c e s i n c a r i n g f o r the b r a i n dead p a t i e n t . 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 s t u d y . The 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 r e q u i r e s t h a t you be a r e g i s t e r e d nurse w i t h a minimum of one year e x p e r i e n c e i n the i n t e n s i v e c a r e u n i t and have p r o v i d e d c a r e f o r a t l e a s t one b r a i n dead p a t i e n t w i t h i n the past y e a r . The study w i l l i n v o l v e a p p r o x i m a t e l y t h r e e , one hour i n t e r v i e w s which w i l l be s c h e d u l e d a t a m u t u a l l y c o n v e n i e n t time and p l a c e . D u r i n g 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 your p e r s p e c t i v e of c a r i n g f o r the b r a i n dead p a t i e n t . The i n t e r v i e w s w i l l be taped to ensure a c c u r a c y i n data c o l l e c t i o n . However, COMPLETE CONFIDENTIALITY WILL BE ENSURED THROUGHOUT THE STUDY by the c o d i n g of data by numbers. The f i n d i n g s of the study w i l l be p r e s e n t e d a t n u r s i n g forums and a l s o s u b m i t t e d to p r o f e s s i o n a l n u r s i n g j o u r n a l s ICU Nurses and the B r a i n Dead P a t i e n t 192 Appendix C Addendum to L e t t e r of Information ICU Nurses and the B r a i n Dead P a t i e n t 193 Addendum to L e t t e r of Information For Research Study: The Experiences of I n t e n s i v e Care U n i t Nurses P r o v i d i n g Care to the Adult B r a i n Dead P a t i e n t In a d d i t i o n , to ensuring complete c o n f i d e n t i a l i t y of a l l p a r t i c i p a n t s throughout the study, c o n f i d e n t i a l i t y of p a t i e n t i n f o r m a t i o n w i l l be p r o t e c t e d . At the s t a r t of each i n t e r v i e w the p a r t i c i p a n t s w i l l be asked not to name p a t i e n t s and t h e i r f a m i l y members. I f names of p a t i e n t s and t h e i r f a m i l i e s are mentioned during the taped i n t e r v i e w , the taping w i l l stop and the names w i l l be erased from the tape before preceding with the remainder of the i n t e r v i e w . At no time during the study w i l l p a t i e n t s or f a m i l i e s be r e f e r r e d to by name. Margaret Borozny, R.N., B.S.N., U.B.C. MSN Student ICU Nurses and the B r a i n Dead P a t i e n t 194 Appendix D Consent Form ICU Nurses and the B r a i n Dead P a t i e n t 195 Consent Form I have read the l e t t e r about Margaret Borozny's study with i n t e n s i v e care u n i t nurses who provide care to the ad u l t b r a i n dead p a t i e n t , and I have f u r t h e r d i s c u s s e d the study with her. I understand that Margaret Borozny w i l l meet with me three times f o r a maximum of one hour each time. The meetings w i l l be at a place and time which i s mutually convenient. The purpose of the meetings w i l l be to d i s c u s s with me my experience of c a r i n g f o r the a d u l t b r a i n dead p a t i e n t . I f u r t h e r understand that my name w i l l not appear on any of the m a t e r i a l s , and that my i d e n t i t y w i l l be p r o t e c t e d . I do understand, however, that the o v e r a l l r e s u l t s of the study may be pub l i s h e d to promote p r o f e s s i o n a l awareness of the meaning i n t e n s i v e care u n i t nurses a t t a c h to c a r i n g f o r the b r a i n dead a d u l t . I understand that i f I give permission to have tape r e c o r d i n g s made of the i n t e r v i e w s , I have the r i g h t to request erasure of m a t e r i a l s that I do not wish to be taken out s i d e of the i n t e r v i e w room. I understand that I ALSO HAVE THE RIGHT TO WITHDRAW FROM THE STUDY AT ANY TIME AND THAT MY WITHDRAWAL WILL IN NO WAY AFFECT MY EMPLOYMENT. I ALSO HAVE THE RIGHT TO REFUSE TO ANSWER ANY QUESTION. ICU N u r s e s and the B r a i n Dead P a t i e n t 196 I h e r e b y g i v e my c o n s e n t t o p a r t i c i p a t e i n t h i s s t u d y . S i g n e d : W i t n e s s : Date : I a c k n o w l e d g e r e c e i v i n g a copy o f t h i s c o n s e n t f o r m . S i g n e d : ICU Nurses and the B r a i n Dead P a t i e n t 197 Appendix E T r i g g e r Questions ICU Nurses and the B r a i n Dead P a t i e n t 198 T r i g g e r Questions The t r i g g e r questions to be used f o r the i n i t i a l i n t e r v i e w were generated by the study's r e s e a r c h q u e s t i o n , the l i t e r a t u r e review and the F e s t i n g e r ' s c o g n i t i v e dissonance framework. These questions are: 1. What i s i t l i k e f o r you to care f o r a b r a i n dead p a t i e n t ? 2. How are your values and b e l i e f s a f f e c t e d ? 3. How do you deal with any i n c o n s i s t e n c i e s between your b e l i e f s and your r e s p o n s i b i l i t i e s ? ICU Nurses and the B r a i n Dead P a t i e n t 199 Appendix F Sociodemographic Data ICU Nurses and the B r a i n Dead P a t i e n t 200 The Experiences of I n t e n s i v e Care U n i t Nurses P r o v i d i n g Care to the Adult B r a i n Dead P a t i e n t Demographic Survey Code: Age: 20-30 31-40 41-50 >51 Sex: Female Race: R e l i g i o n ; B a s i c Nursing E d u c a t i o n : H o s p i t a l C o l l e g e U n i v e r s i t y : Post Graduate Education: Program: P l a c e : Program: P l a c e : Nursing Degrees: BSN: U n i v e r s i t y : _ MSN: U n i v e r s i t y : Non Nursing Degrees: Degree: U n i v e r s i t y : Male Place of B i r t h : Years i n Canada: Years: Years: Years: ICU Nurses and the B r a i n Dead P a t i e n t 201 Work Experience: T o t a l Years i n Nursing: Experience i n I.C.U.: Other Areas: P o s i t i o n : Current P o s i t i o n : Approximate Number of B r a i n Dead P a t i e n t s Cared For: 1 2-5 6-10 >10 

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