intensive care nurses’ experiences of caring for brain dead organ donor patients

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Intensive care nurses’ experiences of caring for brain dead organ donor patients ALAN PEARSON ALAN PEARSON MSc, PhD, RN, DipNed, FCN (NSW), FRCN, FRCNA, FINA Professor of Nursing, La Trobe University, Melbourne, Australia SUSIE ROBERTSON-MALT SUSIE ROBERTSON-MALT PhD candidate, Department of Clinical Nursing, The University of Adelaide, Australia KEN KEN WALSH WALSH BNurs, PhD, RGN, RPN Lecturer, The University of Adelaide, Australia MARY FITZGERALD MARY FITZGERALD MNurs, PhD, RN, RNT Senior Lecturer, The University of Adelaide, Australia Accepted for publication 23 March 2000 Summary This study was designed to identify the feelings and experiences of critical care nurses who have been involved in nursing brain dead patients prior to organ donation. The purpose of the study was to generate knowledge which informs the discipline of nursing. A number of themes relating to nurses’ experiences of caring for brain dead organ donor patients were uncovered in this interpretative study. Overall, caring for patients who are diagnosed as brain dead is a challenging experience for nurses and they are intensely involved in a search for meaning in each event. The interpretative analysis in this study has revealed a range of meanings articulated by the nurses involved. However, the primary focus of care – as identified by the participating nurses – was the donor family. Keywords: brain dead patients, donor families, intensive care nurses, organ donation. Introduction Bioethical issues surrounding organ transplantation and the concept of brain death are receiving increasing attention in the general media and professional literature and there is a growing literature on the experiences and practices of health professionals in this area. The need to examine the experiences of health workers and families involved in organ donation has only recently been identified as a neglected area in need of further research in the Australian context. While there has been Correspondence to: Professor Alan Pearson, School of Nursing, La Trobe University, Bundoora, Victoria, Australia. Journal of Clinical Nursing 2001; 10: 132–139 132 Ó 2001 Blackwell Science Ltd

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Page 1: Intensive care nurses’ experiences of caring for brain dead organ donor patients

Intensive care nurses' experiences of caring for brain dead organ

donor patients

ALAN PEARSONALAN PEARSON MSc, PhD, RN, DipNed, FCN (NSW), FRCN, FRCNA,

FINA

Professor of Nursing, La Trobe University, Melbourne, Australia

SUSIE ROBERTSON-MALTSUSIE ROBERTSON-MALT

PhD candidate, Department of Clinical Nursing, The University of Adelaide, Australia

KENKEN WALSHWALSH BNurs , PhD, RGN, RPN

Lecturer, The University of Adelaide, Australia

MARY FITZGERALDMARY FITZGERALD MNurs, PhD, RN, RNT

Senior Lecturer, The University of Adelaide, Australia

Accepted for publication 23 March 2000

Summary

· This study was designed to identify the feelings and experiences of critical care

nurses who have been involved in nursing brain dead patients prior to organ

donation.

· The purpose of the study was to generate knowledge which informs the

discipline of nursing.

· A number of themes relating to nurses' experiences of caring for brain dead

organ donor patients were uncovered in this interpretative study.

· Overall, caring for patients who are diagnosed as brain dead is a challenging

experience for nurses and they are intensely involved in a search for meaning in

each event.

· The interpretative analysis in this study has revealed a range of meanings

articulated by the nurses involved. However, the primary focus of care ± as

identi®ed by the participating nurses ± was the donor family.

Keywords: brain dead patients, donor families, intensive care nurses, organ donation.

Introduction

Bioethical issues surrounding organ transplantation and

the concept of brain death are receiving increasing

attention in the general media and professional literature

and there is a growing literature on the experiences and

practices of health professionals in this area.

The need to examine the experiences of health workers

and families involved in organ donation has only recently

been identi®ed as a neglected area in need of further

research in the Australian context. While there has beenCorrespondence to: Professor Alan Pearson, School of Nursing, LaTrobe University, Bundoora, Victoria, Australia.

Journal of Clinical Nursing 2001; 10: 132±139

132 Ó 2001 Blackwell Science Ltd

Page 2: Intensive care nurses’ experiences of caring for brain dead organ donor patients

some recent Australian work exploring the experiences of

both donor families and healthcare workers, no research

has yet given intensive care nurses the opportunity to relate

their experiences in an open and unstructured format.

This study was designed to identify the feelings and

experiences of critical care nurses who have been involved

in nursing brain dead patients prior to organ donation.

The purpose of the study was to generate knowledge

which will inform the discipline of nursing.

Background to the study

Medical technology with its rapid development has

transformed organized healthcare in Australia and

throughout the Westernised world. High cost intensive

care units are now features of most acute care hospitals

and the cost of providing the technology on which these

units depend is the focus of much societal debate.

Improved methods for retrieval and transplantation of

organs as well as advances in immuno-suppressive therapy

over the last 20 years have resulted in an increase in the

number of patients receiving transplanted organs, and as a

consequence a rapid increase in the demand for cadaveric

organs (Crandall, 1987). The impact of these develop-

ments on patients, their families, healthcare workers and

society as a whole is yet to be adequately explored.

Nurses provide physical care and support to potential

donors, care for their families at a time of great emotional

upheaval and anguish, and are involved in organ donation

requests and the continuing support of relatives, whether

they consent to donation or not. Nurses are the healthcare

workers who are most consistently, intensely and exten-

sively involved in the care of potential organ donors and

their families. Hence, it follows that through their

experience nurses are in a particularly useful position to

provide insights into the complex questions that surround

organ donation and transplantation.

Increasing ambiguity seems to be one outcome of the

rapid pace of technological innovation surrounding one of

the major concerns of human existence ± the transition from

life to death. In earlier times, cessation of breathing and

heartbeat was unambiguously considered as the moment of

death. However, brain death now seems to be a ®nal

determinant of death in highly technological societies.

Nevertheless, there is still considerable debate internation-

ally among health professionals as to whether determination

of brain death entails con®rmation of permanent non-

function of the whole brain, cortex or brain stem, and hence

the appropriate criteria for determining when death has

occurred (Sophie et al., 1983; Bouressa & O'Mara, 1987;

Borozny, 1988; Younger et al., 1989).

This debate re¯ects, to some extent, the deep emotional

con¯ict that can arise for people when they are faced with a

person who is brain dead but who appears physically to still

be alive (Lamb, 1985; Younger et al., 1985; Murphy, 1986;

Bisnaire et al., 1988; Atkins, 1992). Younger et al. note:

even health professionals who understand and accept

the new criterion for death on an intellectual level

may ®nd it dif®cult to ignore the signs of life that

constantly bombard their senses as they provide brain

dead organ donors with intensive and intimate

medical care (1985, p 321).

The appearance of a brain dead person whose organs are

being maintained for transplantation differs signi®cantly

from that of other dead people. The paradox of a brain

dead patient who appears to be breathing and is still warm

gives rise to one source of moral con¯ict that characterizes

work in this area (Lamb, 1985; Younger et al., 1985, 1989).

Intensive care units are geared towards preservation of

life. Yet, in the case of a patient who is to become an organ

donor:

intensive care personnel may feel confused about

having to perform cardiopulmonary resuscitation on

a patient who has been declared dead, whereas a `do

not resuscitate' order has been written for a living

patient in the next bed (Younger et al., 1985; p 321).

This con¯ict for nurses is not readily resolved by simply

clarifying the ethical issues surrounding the concept of

death, for the response is not an intellectual one but an

emotional, experiential one.

Nurses' high level of involvement with grieving families

of brain dead patients can be a source of great personal

stress (Shubin, 1990). This, combined with their own

con¯icts stemming from their involvement in organ

donation, creates an extra layer of stress and complexity

in their interactions with family members (Younger et al.,

1985, 1989; Borozny, 1988; Shubin, 1990). This may

culminate in families of brain dead patients receiving

mixed messages, or having their expectations of recovery

raised unrealistically (e.g. Shubin, 1990).

If donation is agreed to, nurses often have to explain the

change in the nature of care being received by their

relative. In many cases, levels of activity at the bedside

increase dramatically as attention is directed towards

maintaining the function of the organs to be donated

(Bisnaire et al., 1988). This, coupled with the paradox of

the patient still looking `alive' and `breathing', undermines

the process of intellectual acceptance of death and is

counter-intuitive to society's deeply held beliefs about

what death means (Sophie et al., 1983; Lamb, 1985;

Younger et al., 1985; Murphy, 1986). Nurses and families

struggle with these issues within themselves while they are

Nurses' experiences of caring Caring for brain dead organ donor patients 133

Ó 2001 Blackwell Science Ltd, Journal of Clinical Nursing, 10, 132±139

Page 3: Intensive care nurses’ experiences of caring for brain dead organ donor patients

endeavouring to come to some sort of acceptance of this

unusual concept of death.

Bioethical issues surrounding organ transplantation and

the concept of brain death have received substantial

attention (e.g. Marsden, 1985; Irwin, 1986; Bouressa &

O'Mara, 1987; Crandall, 1987; Simpson, 1987; Borozny,

1988; Wegerman, 1988; Johnstone, 1989; Atkins, 1992).

Nevertheless, little research has been undertaken into the

experiences of those who are directly involved in these

procedures: health professionals. The need to examine the

experiences of nurses and families involved in organ

donation became a research issue in the Australian context

about 10 years ago (Johnstone, 1989; HIC, 1990). Whilst

some research has been carried out in the Australian

context on nurses' attitudes to organ donation (Duke

et al., 1998), no Australian research has explored the

experience of nurses and families.

The paucity of research on the subject is of concern and

highlights the importance of this study. Organ transplan-

tation is continuing to expand, irrespective of debates

concerning its priority in healthcare funding. Research that

seeks to uncover the experiences of participants in organ

donation is long overdue. It is hoped that the ®ndings from

this study will make a signi®cant contribution to ongoing

discussions regarding this expanding area of healthcare

practice and to the development of policies and procedures

for minimizing stress and trauma for families and nurses.

Methodology and methods

The study focuses on the interpretation of experiential

accounts of nurses and is grounded in the phenomeno-

logical approach described by van Manen (1990). Phe-

nomenological research involves obtaining experiential

descriptions from others and emphasizes the meaning of

lived experience.

Through interpretation, the researcher engages in a

process of analysis that leads to identi®cation of themes.

The resulting thematic classi®cation has the potential to

momentarily illuminate meanings associated with a phe-

nomenon as experienced by participants. Themes are

therefore not considered to be mere objects or generaliza-

tions of a super®cial analysis but, as van Manen (1990)

states, more likened metaphorically speaking to `knots in

the webs of our experience, around which certain lived

experiences are spun and thus lived through as meaningful

wholes' (p90). As phenomenology is concerned with and

acknowledges `the values and meanings people ascribe to

their own existence' (Taylor, 1993; p173), it is the

methodology of choice in a study such as this which seeks

to illuminate the experience of participants.

Much has been written on the trustworthiness and

rigour of phenomenological research, for example Knaak

(1984), Koch (19941;2 , 1995), Munhall (1993), Plager (1994),

and Rose et al. (1995). However, the goals, philosophy and

methods of phenomenology and empirical science differ

markedly and one cannot be judged by the standards of

the other. In phenomenological research it is essential that

the interpretation of the researchers should `®t' and be

`plausible' with the expressed experience of participants.

To paraphrase Weinsheimer (1991)3 , it is interpretation

that comes from within the text because you have situated

yourself within the text. Hence it is important to give

examples of the narrative of participants so that plaus-

ibility and ®t can, to some extent, be judged by readers. In

the present study the researchers did not return to validate

interview transcripts with participants nor did they (as

recommended by Benner, 1994) conduct multiple inter-

views in order to clarify meaning or obtain richer

descriptions. To go back over the ground of an interview

again with a participant is to reinterpret the interview with

the participant and once this process begins it begs the

question, `When will it suf®ce to say enough is enough?'

In order to gain descriptions of the experience from

different perspectives, a total of 20 nurses from intensive

care units were recruited for the study: 10 from a

metropolitan hospital in South Australia and 10 from a

rural hospital in Northern New South Wales. A plain

language statement informed prospective participants of

the aims of the study, their level and type of commitment

should they agree to participate, and their right to

withdraw from the study at any time.

INTERVIEWSINTERVIEWS

A focused but non-structured interview technique was

used. Participants were asked to talk about a particular

experience of caring for an organ donor patient and no

pre-set questions guided the interview. This approach

supports the relative hermeneutic phenomenological

nature of the study as the interviewer did not assume to

know the important aspects of the experience to be

revealed and therefore did not design questions to be

answered by participants in order to attend to such beliefs.

4Data analysis

Tapes were transcribed and analysed according to the

thematic data analysis described by van Manen (1990):

· Interviews were transcribed verbatim;

· Transcriptions were read with every effort being made

on the researcher's part to be totally submerged in the

Ó 2001 Blackwell Science Ltd, Journal of Clinical Nursing, 10, 132±139

134 A. Pearson et al.

Page 4: Intensive care nurses’ experiences of caring for brain dead organ donor patients

text in order to identify the implicit or essential themes

of the experience, thus seeking the meaning of the

experience;

· Thematic statements (essentials) were isolated.

A total of 10 themes were identi®ed and considered

expressive of the central premise of the analysis, which is

that for the nurses in this study an intent to care for the

families was the impetus of all care for the patients. It

appeared that `family' included anyone the primary family

considered to be `family', whether or not they were in fact

biologically related.

Nurses' descriptions of their care conveyed a focus of

care that underwent a subtle yet profound shift from one

that held patients as the central intent of all care to being

care of patients out of concern for families. This subtle

shift in nurses' intent to care, however, does not imply

that nurses excluded patients from their focus of care but

that the focus of being able to care for patients was

achieved by shifting their attention and time to families.

Many acts of caring for patients were carried out as much

for families' needs as for patients' needs. In all cases the

focus of caring was centred on families and their needs,

this being expressed in different ways.

It was not possible to identify any notable differences in

meaning between rural and metropolitan participants.

This is partly because of the nature of the methodological

position chosen (since individual meaning is central to the

analytical enterprise), but relates more to the similar

characteristics of all the accounts of experience as captured

in interviews.

The following two major themes illuminate the phe-

nomenon of caring for a person who has been diagnosed as

brain dead and becomes an organ donor. Each theme

comprises a number of sub-themes.

THE FAMILYTHE FAMILY

1 Prioritizing the family's needs;

2 Empathizing with the family's tragedy;

3 Supporting the family's decisions;

4 Realizing that caring for the patient shows care for the

family;

5 Encouraging space and privacy for the family to grieve,

say their goodbyes and, hopefully, accept the situation;

6 Intruding on the family's grief.

THE NURSETHE NURSE

1 Emotional demands;

2 Maintaining respect for the brain dead patient as if they

were alive;

3 Trying to explain away the ambiguities;

4 Focusing on the outcomes.

The subthemes are discussed below.

THE FAMILYTHE FAMILY

Prioritizing the family's needs

Caring for the family and attempting to meet their

emotional needs was of central importance to all the nurses

in the study when caring for an organ donor patient.

These nurses still attended to the basic physical needs of

the patient; however, the focus of their care became more

concerned with supporting the family throughout this

tragic event:

I mean you do look after the technology and what

have you and you have to maintain you know, a good

urine output and all that, the haemodynamic side of

it ± you have to do all of that. But that's not really

what your major focus is. It sort of shifts, and in

actual fact your major focus is to the relatives¼You

just switch, I remember just being with the relatives

and talking to the relatives a lot and you know

hugging them and that sort of stuff (Nurse 1).

Transcending the routines and rituals of practice in

response to the family's needs proved emotionally and

professionally rewarding:

We had done the best job we possibly could for

that lady in helping her get through her daughter's

tragic death.

Empathizing with the family's tragedy

Nurses' intent to prioritize the emotional needs of the

family often came from an empathy that they were able to

extend towards the tragic circumstances into which the

family had been suddenly thrown:

I was aware of the depth of her pain. It hit me¼ and

I just sat with her and I cried with her and then the

social worker took her by the shoulders and the

family, and walked her to the taxi, to the waiting taxi,

and she cried all the way (Nurse 2).

The ability to emotionally connect with the family's

grief often resulted in nurses being able to anticipate what

would be particularly distressing for them. Many nurses

would therefore attempt to modify hospital routine and

policies as needed in order to prioritize the emotional

needs of the family. However, this in itself was often

emotionally demanding:

They were able to say goodbye afterwards. I got

really emotionally involved when they rang from

Ó 2001 Blackwell Science Ltd, Journal of Clinical Nursing, 10, 132±139

Nurses' experiences of caring Caring for brain dead organ donor patients 135

Page 5: Intensive care nurses’ experiences of caring for brain dead organ donor patients

theatre to say that, you know, they were ready, and

that Jeremy could come back to the unit, I went down

and he was on a trolley and I thought that there was

just no way that I could bring that little boy back on a

sterile trolley. And so I made the decision I wanted to

carry him back so that I could hand him to his

parents (Nurse 5).

Supporting the family's decisions

The centrality of concern for the family's experience to

nurses' care was likewise evidenced by their commitment

to maintain a non-biased support of the family's decisions

despite their own feelings about the situation(s) at hand.

Nurses concentrated on watching family dynamics and

offered guidance and support as needed whilst maintain-

ing acceptance of whatever ®nal decisions were made:

They were the decisions the family had made and I'd

support them, you know, to the best of my ability

(Nurse 5).

Realizing that caring for the patient shows care for the family

Having cared for a heart beating donor at least once before

enabled many nurses to learn that one way in which they

were able to help the family through the experience and

prioritize their emotional needs was to be attentive toward

the family's loved one: the patient. Making sure that the

patient looked as clean and tidy as possible was a principal,

yet simple, way that many nurses felt they could convey

this care to the family:

I mean I was really fussy, I used to do her hair and

stuff because she had long hair. And I'd plait it

and make her look really nice as I could make her

look for the family. I mean her family were always

there. I use to touch her in the same way, like I used

to stroke her arm and stuff like that (Nurse 14).

Prioritizing the basic nursing care of the patient likewise

held the family's emotional needs in constant concern.

This steady simple care was a principal means for nurses

to convey to the family that the loved one was not a mere

object for use: an object with no grander value than what it

could give to another.

Encouraging space and privacy for the family to grieve, say

their goodbyes and, hopefully, accept the situation

Being able to afford families all the privacy and space they

needed in trying to come to terms with the situation was

an important aspect of nurses' care:

There's a huge amount of your care goes towards

supporting the family and giving them the time and

allowing them to be close. You know, to get in and

hug and kiss and do what they want (Nurse 16).

Allowing the family the necessary freedom and space

to express their grief in whatever manner was appropri-

ate to their needs was also an important aspect of care

given. Orchestrating the environment and ®nding some

quiet time and space for them to be with their loved one

after the operation, when the patient had returned to the

ward, was a constant thought for many nurses in this

study.

Intruding on the family's grief

Unit policies often stipulate that the nurse should remain

close to a ventilated patient at all times. Such policies

tended to limit nurses' efforts to try and afford the family

freedom and space to be with their loved one in the ®nal

moments and consequently induced feelings of guilt and

frustration as nurses continuously sensed their intrusion

on the family's grief:

I remember trying to stay in the background and

thinking, `What am I going to do now?'. It's like you

feel conspicuous and you just want to disappear and

in a way you could really do that, but you can't

because you have always got that feeling of being

trained that you must remain near your patient at

all times. So, you know, I used to just ¯uff around

at the end of the bay and it's like you used to ®nd

things to do because you felt in the way (Nurse 14).

THE NURSETHE NURSE

Emotional demands

Nurses' descriptions of their care revealed a need to

constantly clarify for the family the diagnosis of brain

death and the reality of the situation: that their loved one

was dead despite looking alive. When this need is added to

nurses' ability or willingness to personally connect with

the family's tragedy, the propensity for care to become

demanding on all levels ± emotionally, physically, psy-

chologically and spiritually ± increases. Each nurse

described a difference in the way in which the emotionally

demanding nature of care became apparent. For Nurse 7

the magnitude of cases that he had to deal with in a certain

period of time was often a factor that precipitated the care

becoming sometimes overwhelming:

It's usually the accumulation, like if you have one

brain death in a week that's okay, but if you have two

or three or even four, then suddenly you just can't

come to work. But the reality is that it is just a

Ó 2001 Blackwell Science Ltd, Journal of Clinical Nursing, 10, 132±139

136 A. Pearson et al.

Page 6: Intensive care nurses’ experiences of caring for brain dead organ donor patients

terrible thing to have to keep dealing with, it eats at

your soul (Nurse 7).

Resolve and the capacity to cope were achieved for

many nurses through being able to ®nd a place/space that

was totally unassociated with the faces and spaces of the

intensive care environment. Some took long walks on the

beach or went horse riding.

Maintaining respect for the brain dead patient

as if they were alive

Another way in which nurses were able to convey to the

family a concern and respect for the patient as more than

just a donor was by remaining consistent in their care,

despite the diagnosis of brain death. They still continued

to treat and talk to the person as they did prior to the

diagnosis of brain death and as they would any other

patient in their care. Although nurses' acknowledged the

patient's death, to them the patient remained a person

who commanded a quality of care and respect deserving

of that signi®cance. However, maintaining respect for the

patient as a person by continuing to talk and relate to

them as if they were alive made the nurses' role of

`clari®er' all the more dif®cult. The already murky

distinction between the life and death of the patient

seemed exacerbated by such behaviour. However, nurses

saw little option or few avenues to change this con¯ict as

respect for the family and patient remained central to

their care:

That the irony of the whole thing, I guess, is that you

know, you listen to what brain death is and you watch

them being tested for brain death, you understand.

You know you can say, `Well that's okay and I believe

the testing is, you know, suf®cient' and stuff like

that. And you can say, `Yes, okay' and you go

through the ritual of talking about organ donation

and going for it and all of that. And then, on the

other side how you're acting it contradicts what you

have just been through. Of saying, `Yes I accept it'

and `Yes I'll consent to organ donation' and `Yes I

support the decision that they've made.' But then on

the other side, you continue to treat the patient like a

patient! (Nurse 14).

Trying to explain away the ambiguities

As noted above, a major role played by nurses in this study

was that of `clari®er'. In this role nurses endeavoured to

explain the circumstances surrounding the diagnosis and

the regretful ambiguity of their loved one looking alive but

being diagnosed as dead:

They can look perfect, that's what just blows the

family away, I'm sure, sometimes. You know, how

can they be, how can you tell me that's what is

happening inside their head when, you know, he

hasn't got a scratch on him, type of thing. And then

you know, you sort of have to then go through it all,

just try to explain that, yeah it must be really hard for

you, you know, you can see him laying there and

not a scratch on him but then that just goes through,

um, through teaching then and usually they've been

shown X-rays or CT scans and they'll go through

and show what's happened there (Nurse 12).

Despite the importance of this role as `clari®er' the

nurses were not indifferent to the complexities of

decisions families had to make. They were often taken

with the irony of their own beliefs in the context they

found themselves in:

I mean, I really don't know, I mean, I know on my

driver's licence I've got `Yes' to organ donation. But,

um, you sort of think if she [daughter] was lying

there in the bed, brain dead, would I give her organs

and I think, `No, I wouldn't'. But if she was lying

there in renal failure would I take a kidney? And you

think, `Yes I would!' And that doesn't, sort, you

know, that's not logical. That does not seem like a

fair thing to do. But I really don't know (Nurse 7).

Focusing on the outcomes

One way in which many nurses learned to cope with the

experience was to focus on the outcomes and encourage

families to do the same: to try and focus on the `positive'

fact that from this death another one, two or maybe three

lives could be saved:

I think too because you know it's going, it's just

not gonna be a wasted death. Like at least, I mean

it's still hard, you know, it's still somebody who

has died but something in a way is coming out of

it¼ and I ®nd that a lot easier (Nurse 11).

However, for some families this thought is not always

comforting:

I remember one guy saying to me, `This is great, that

the organs are being donated but I'm losing my wife

and that's not great. There's not one good thing

about that at all' (Nurse 4).

Discussion and conclusion

The meanings that these 20 nurses drew from their

experiences of caring for people who became organ donors

have been identi®ed through applying van Manen's

Ó 2001 Blackwell Science Ltd, Journal of Clinical Nursing, 10, 132±139

Nurses' experiences of caring Caring for brain dead organ donor patients 137

Page 7: Intensive care nurses’ experiences of caring for brain dead organ donor patients

approach to textual analysis and are presented in the form

of 10 major themes. The primary focus of care ± as

identi®ed by participating nurses ± is the donor family.

All nurses in this study were highly skilled in the use of

sophisticated technological equipment and pro®cient in

monitoring complex physiological processes. All these

skills were in continuous use as part of the caring practices

they describe in the data. Yet, despite the central role of

`high tech' care in each of the stories told, the central

meanings which arose out of the experience relate to the

nature of human interaction and our ability to confront

and deal with a sudden diagnosis of death, followed by a

need to respond to a request to donate living organs.

Although all the nurses describe a major involvement in

the processes of caring for organ donor patients and their

families, and a commitment to procurement of organs from

people who are diagnosed as brain dead, the experience

is surrounded by a range of con¯icting meanings. These

con¯icts relate to:

1 The apparent ambiguity that accompanies the procla-

mation of death, over a body which exhibits tradition-

ally accepted signs of life;

2 The distress of family members who have to confront a

sudden catastrophe and comply with requests to equate

brain death with `real' death;

3 The nurses' own knowledge that the focus of their care

relates to an outcome (i.e. saving another life by making

organs available for transplant) which is rarely wit-

nessed by families involved.

The nurses describe a struggle to balance con¯icts in

meanings and rely on a number of strategies to maintain

some equilibrium so that they can continue to contribute

to the organ donation programme through caring for

donors and their families. One source of encouragement

for the nurses arises out of focusing on the eventual

positive outcomes: that the donation process can give hope

to another in need. In their efforts to support families

through the immediate stages of the event, nurses

encourage families to do likewise.

Nurses also describe a sense of satisfaction in `doing the

best they can' for families and maintaining a caring

environment. The latter enterprise includes both protect-

ing relatives from unnecessary pressures and consistently

confronting families with the reality of the unfolding

situation. Explaining brain death in a manner that removes

ambiguity is a constant battle for the nurses, who are

invariably aware of how ambiguous it must all appear to

families. A subtle balance needs to be struck between what

families can cope with hearing and what they need to

know in order to realize the complexities of the circum-

stances they are confronting. How each family will

respond to the circumstances and therefore what each

family may need to know in order to traverse the

experience is different, simply because of their unique

histories and circumstances. This is the ®ne line which

nurses have to travel in order to support families in a

constructive and meaningful way. However, even though

this process is emotionally demanding, doing it well means

that nurses can care for organ donors and this in turn is a

way of caring for their families. For the nurses who

participated in this study, caring for brain dead patients is

deeply meaningful work which challenges their nursing

skills; however, it is not something which they reject as

inappropriate, or a process of which they are critical.

The con¯ict for these nurses relates directly to the

ambiguity of the death statement ± where no hope of

recovery is translated to mean `real' death. The physical

appearance of brain dead people, the family members'

presence and actions at the bedside, and nurses' own

attempts to treat brain dead patients `as if they are alive' all

contribute to this ambiguity. Because of this, the con¯ict

for these nurses is not essentially an intellectual one, but is

emotional and experiential in nature.

Overall, caring for a patient who is diagnosed as brain

dead is a challenging experience for nurses and they are

intensely involved in a search for meaning in each event.

The interpretative analysis in this study has revealed a range

of meanings articulated by the nurses involved. Such

®ndings cannot, of course, ever be regarded as representa-

tive of other nurses, but offer some insight into an important

component of nursing practice in contemporary healthcare.

Organ transplantation is continuing to expand irrespec-

tive of debates concerning its priority in healthcare

funding. In discussing the ongoing debate about brain

death and organ donation, Whittacker (1990) suggests:

What does seem clear is that cadaveric organ

donation is an emotive subject for many and that

ideological objections go much deeper than mere

sel®shness, obstructiveness or ignorance of the facts

(Whittacker, 1990; p.37).

Further research seeking to uncover the experiences of

participants in organ donation will illuminate our under-

standings further and give substance to both the ongoing

development of practice policy and healthy debate on the

nature of death and brain death in a society which is

increasingly nervous about the frailty of the human

condition.

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