Transacting self-preservation: a grounded theory of the spiritual dimensions of people with terminal...

Transacting self-preservation: a grounded theory of thespiritual dimensions of people with terminal cancer

Joan Thomasa,*, Andrew Retsasb

a21 Greg Norman Crescent, Parkwood, Qld 4214, AustraliabRMIT ± Nursing and Austin and Repatriation Medical Centre, Melbourne, Australia

Received 10 August 1998; accepted 12 October 1998

Abstract

This study describes the spiritual meanings people with terminal cancer give to their everyday life-experiences.Transcriptions from semi-structured, in-depth interviews of 19 adults who had a diagnosis of cancer and who were

living in Queensland and New South Wales, Australia, were analysed using the constant comparative approach ofgrounded theory. The study found that people with terminal cancer develop a spiritual perspective that strengthenstheir approaches to life and death. Their discovery of spiritual meaning is enacted through a process of transactingself-preservation. This process incorporates three phases, taking it all in, getting on with things and putting it all

together. As people with terminal cancer move through these phases they transact self-preservation by discoveringdeeper levels of understanding self. This discovery of self incorporates a higher level of spiritual growth, spiritualperspective, spiritual awareness and spiritual experiences. The study indicates that nurses can help people with

terminal cancer develop coping strategies that allow them to engage in the process of transacting self-preservation.This study also shows that there needs to be more emphasis on spirituality, spiritual issues and the role of spiritualcaring in nursing curricula and practice. # 1999 Elsevier Science Ltd. All rights reserved.

1. Introduction

For some writers, spirituality equates with faith,

hope, trust, the giving and receiving of love, forgive-

ness, reconciliation, and meaning in life (McGlone,

1990; Taylor and Ferszt, 1990; Widerquist, 1992).

Spirituality is also sometimes considered a basic deter-

minant of the totality of a person or a central life

force that contributes to a person's wholeness (Amenta

and Bohnet, 1986; Hiatt, 1986). Peck (1993) has said

that a person's spirituality involves a journey of per-

sonal growth that culminates in a deep sense of inter-

connectedness between the person and other people

and a sense of connection with a higher metaphysical,

but not necessarily a religious, being. Other writers

have considered spirituality in terms of interpersonal,

transpersonal, and/or intrapersonal experiences and

processes (Hover-Kramer, 1989; Johnson, 1991). For

the purposes of this paper, spirituality is viewed as an

inherent aspect of the individual self incorporating a

source of strength developed through a person's faith

in self, others, God and/or another Higher Being.

Spirituality re¯ects an expanded consciousness beyond

a biopsychosocial awareness and gives meaning and

purpose to a person's life as they transcend their every-

day experiences (Thomas, 1997).

Although nurses have begun to consider a person's

spirituality as meaningful and as an important aspect

of holistic care, they often fail to fully meet this aspect

International Journal of Nursing Studies 36 (1999) 191±201

0020-7489/99/$ - see front matter # 1999 Elsevier Science Ltd. All rights reserved.

PII: S0020-7489(99 )00012-7

* Corresponding author.

E-mail addresses: [email protected] (J. Thomas), andre-

[email protected] (A. Retsas)

of their patients' needs (Lane, 1987; Trice, 1990; DiMeo, 1991; Corrine et al., 1992). One group for whom

spirituality is an important aspect needing deeperunderstanding is people with terminal cancer(O'Connor et al., 1990). However, there is virtually no

research that describes the relationship between a per-son with terminal cancer and their spirituality.`Transacting self-preservation' is a process that

re¯ects people's ways of ®nding spiritual meaning intheir experiences of terminal cancer and how theyachieve deeper levels of spirituality during the three

phases of this process. These phases incorporate `tak-ing it all in', `getting on with things' and `putting it alltogether', that describe coping strategies people withterminal cancer use to overcome the barriers that hin-

der the discovery of a meaningful existence whenfacing death. Transacting self-preservation implies dee-per levels of understanding self through spiritual

growth, spiritual perspective, spiritual awareness andspiritual experiences.

2. Study purpose

The purpose of this study was to construct agrounded theory that explains how the spirituality ofpeople with terminal cancer develops as they make

sense of and come to terms with their diagnosis. Thestudy was underpinned by a desire to establish answersto questions such as: What are the spiritual experiencesof people with terminal cancer? How do people with

terminal cancer create meaning and purpose in theirliving and dying processes? and How can this meaningbe understood from a spiritual perspective? The study

was based on an assumption that spiritual mattersbecome more signi®cant and the degree to whichpeople focus on other matters in their life become less

important when they are aware of their approachingdeath from cancer. This assumption was based on theauthors' professional and personal experiences with

people who have terminal cancer. A diagnosis of term-inal cancer was believed to prompt the su�erer toengage in spiritual re¯ection and to consciouslydevelop an openness to spiritual experiences and their

own spirituality as a way of making sense of theirimpending death.

3. The sample

The sample (n=19; female=12; males=7) consistedof voluntary participants who had a diagnosis of term-inal cancer, were between 30 and 90 years of age and

had su�cient English pro®ciency to allow communi-cation with the researcher. The purposive samplemeant that participants were selected on the basis they

could provide insight into the phenomena being stu-died and was developed mainly through `snowballing',

that is, by one person introducing another to thestudy. At initial contact, participants were informed ofthe nature and purpose of the study, were free to with-

draw at any time and were able to access counsellingassistance should the study prove distressing to them(no participant required this assistance). Gri�th

University's Human Experimentation ResearchCommittee provided ethical approval.

4. Data collection and analysis

For this study, grounded theory was used because itcould help the researcher understand and give meaning

to the spiritual aspects of people with terminal cancerby `taking the role of the other' (Wilson, 1989, p. 455).From this position the researcher could interpret the

experiences of people with terminal cancer as theyemerged from their own detailed accounts (Parse et al.,1985; Burns and Grove, 1987). Once agreement to par-ticipate was obtained, interviews were arranged with

participants, almost always in their own homes at atime convenient to themselves and when interruptionsfrom family members were minimal. Most interviews

lasted between 1±2 h and were audiotaped for latertranscription.Although all but one participant (who did not com-

ment either way) said they did not mind being namedin published material, pseudonyms were used ìn text'for identi®cation of transcription excerpts during

analysis and discussion of ®ndings. This ensured thatdata were presented as personalised accounts, but inan anonymous way.An interview guide consisting of questions, such as,

How would you describe the feelings you experiencedwhen you were told that you have incurable cancer?was developed by the researcher and examined by a

panel of eight èxperts in the ®eld' of acute cancer and/or palliative care. These questions were used to guideconversation during the in-depth interviews and were

modi®ed during the course of the data collectionaccording to whether participants demonstrated adesire to extend conversation or were reluctant to doso. After the ®rst two interviews the interview guide

was found to be unnecessary. Participants were morerelaxed and spoke more freely when the interviewguide was not in use. To keep on track, the researcher

used an àid memoire' (Minichiello et al., 1990) or alist of speci®c topics, for example, attitudes and beha-viours, to guide interview questions and aid data col-

lection. At each initial individual interview theparticipant was asked to choose key words from a listcomprising words such as hope, forgiveness, cancer,

J. Thomas, A. Retsas / International Journal of Nursing Studies 36 (1999) 191±201192

death, dying, reconciliation, faith and belief. This in-

itiative created a relaxed environment, established sen-

sitivity to the meanings the participant gave to cancer,

and established a baseline of meanings for words with

which the participant was comfortable and that the

researcher sought to adopt during individual inter-

views. Notes, memos and diagrams also formed part

of the database. Follow up interviews were conducted

in order to `debrief' participants and, where necessary,

to clarify data and insights.

Fig. 1. Merging categories and subcategories to form a core category using the paradigm model during selective coding.

J. Thomas, A. Retsas / International Journal of Nursing Studies 36 (1999) 191±201 193

Data were analysed using the constant comparativemethod of analysis described by Strauss and Corbin

(1990), in order to generate a grounded theory of thephenomena being explained. This approach of simul-taneously collecting and analysing data has now been

well described in the nursing literature. A paradigmmodel (Strauss and Corbin, 1990) helped to organiseconcepts, categories and subcategories, and to make

connections between these and a single core category,that is, `transacting self-preservation', that emergedduring the coding processes (see Fig. 1).

5. Deriving the elements of the grounded theory

The data analysis process led to the identi®cation ofa single unifying core category labelled `transacting

self-preservation'. The grounded theory asserts thatpeople with terminal cancer develop their spiritualnessas they make sense of and come to terms with their

diagnosis, and this can be understood in the context oftransacting self-preservation. Evolution of this processis dependent on three dynamic and interconnectedbehaviours, that is, `taking it all in', `getting on with

things' and `putting it all together'. While it wouldappear that participants worked through the process oftransacting self-preservation in a step by step fashion,

it is important to acknowledge that variations to theprocess will occur, given the ad hoc and overlappingnature of human experience.

6. Transacting self-preservation: taking it all in

Taking it all in (see Fig. 1) began once the diagnosishad been made known to the participant and involved

them `responding' and `questioning' their perceptionsof the cancer illness and how they perceived their out-come. Responding re¯ected shock, fear, unprepared-

ness, denial and unacceptance of the illness andimpending death. Participants commonly responded tothe diagnosis of cancer with `Ì couldn't come to terms

with it'', `Ì just couldn't believe it'' and ``[cancer] sortof sprung up ... now just deciding to turn up''. Sharnwas more explicit:

Sharn: It didn't sink in for ages, about the cancer... it made me realise that it was pretty serious onceI'd had the mastectomy, but I still sort of, but I

still don't really, until I was reading a book andthey said stage three, I was really quite shocked, Ididn't think I was that serious you know, I justthought it was like a little lump, you know, and

then I thought that's big time.

In responding to their diagnosis, participants often

demonstrated a heightened awareness to cancer and a

desire to know more.

Dorrie: Oh much more, I don't turn away when it's

[cancer] on TV now.

Trina: You watch everything [about cancer], you

listen to everything [about cancer], you read every-

thing [about cancer] ... you become more aware of

how much of it there is around ... It's the same as

when you want a particular new car. Everywhere

you go you see this particular car.

Initially, too much detail, explanations of surgical

procedures, drug therapy, side e�ects and the enormity

of the situation they faced were more of a problem

than lack of information.

Jane: The doctors rattle on about terminology. Dr.

Jay he just went o� like a machine gun about all

the alternatives about what he was going to do for

me ... .you have all these options to think about.

It's a bit mindboggling at the time.

Participants demonstrated a range of emotions while

responding to their diagnosis and what it meant to

them. Some described feeling sorry for self, bitterness,

depression, anger and tearfulness, but, as Trina said,

these emotions were felt at di�erent times ``not all

together''.

While responding, most participants found it di�cult

to accept or even recognise the encouragement and

positivity provided by family and friends. Some partici-

pants also felt very strongly that nurses and doctors

ignored their emotional needs too often, or did not

deal with them satisfactorily.

Trina: It's so infuriating and annoying to someone

who has got cancer and, they're left in that room

on their own. You're on your own, you've got this

cancer on your own. And you see the nurse back/

forth, back/forth, back/forth, the doctors just come

in `òh yeah, all right'', and they're out again. The

nurses don't come in just to see how you are. In

case I ask them something and they're too frigh-

tened to answer me. In case the doctor then comes

back in and slaps their wrists.

A second way of `taking it all in' was `questioning'

and involved participants evaluating the causes of their

cancer, usually by re¯ecting introspectively about

themselves and examining their past behaviour.

Trina: ... you think well I haven't abused my body,

I've done all the right things. I haven't smoked. I


haven't drunk alcohol to excess, taken drugs, whyshould I get it? How did I get it?

Participants justi®ed leading a good life, that is,being honest, law abiding, and being a good parent, as

grounds for not developing cancer. Some participantsbelieved that when they had not led a good life, cancerwas deserved. Thus, some participants commonlyspoke of their cancer as a `punishment' from God.

When they believed that God gave them cancer theysaw it as remedial because they needed to learn fromthe experience, saying that `Ì needed a good shaking

up''. Some participants blamed God for giving themthe cancer, while others questioned their relationshipwith and even the existence of God:

Trina: I wondered what I'd done, why it happened,thinking maybe I have done something. But what?If only I knew ... The Higher Being if He [God] is

so good why did he let this happen to me? ... whenyou see all these bank robbers and murderers goinground they seem to get away with things, whereas

I've not done anything like that, why should I getit.

7. Transacting self-preservation: getting on with things

In getting on with things, the initial shock andadjustments of `taking it all in' had abated (but notnecessarily entirely resolved) and participants were

more able to confront the reality of their diagnosis. In`getting on with things', participants thought aboutcancer often, to the point that it permeated all aspectsof their existence and governed and structured their

lives. They often recounted events according to timedimensions of their experience of cancer, for example,``before I had cancer'', `àfter my chemotherapy'' and

``when I got the secondaries''. Fig. 1 demonstrates thecoping strategies in this phase of transacting self-pres-ervation when participants confronted their cancer by

`mobilising' into action and by `connecting' with theself, others, God or another Higher Being.`Mobilising' involved making choices, weighing up

options, taking responsibility, participating in decisions

a�ecting them and others, taking control, setting goalsand gauging future outcomes. All of these behavioursbrought the reality of their cancer into a fuller and

more accurate perspective and showed a change frompassive to active `participation' in what was happeningto them. `Mobilising' thus helped reduce participants'

apprehension about the complexity and ùnknowns' ofthe cancer illness.In the process of mobilising, participants often

explored the therapeutic bene®ts of alternative and/or

complementary treatments, weighed up the pros and

cons of such therapies and often adopted one or more

of these practices as a useful adjunctive modality. They

also took responsibility for keeping to the choices they

had made. For example, some participants incorpor-

ated beverages such as paw paw juice into their diet

and began to take regular physical exercise. Others

sought to minimise stress by engaging in prayer, medi-

tation, and other religious healing practices or by

adjusting their attitude to the importance of things.

Paula: If I have to do two or three things in the

day I'll try to take one, or if not two out of that

day and just cope with the one thing.

While mobilising, participants also sought approval

for their decisions from others, often because they

were uncertain whether their choices would be e�ec-

tive.

Jane: ... you make a decision and then you're very

frightened about that decision, if you've done the

right thing or not 'cause I had the options of choos-

ing surgery or chemo and I chose chemo. I worried

about whether I'd made the right decision for

myself.

However, mobilising often proved too great a bur-

den. For example, all participants who made lifestyle

changes did so temporarily, partly because they

believed there was insu�cient evidence that the

changes they had adopted would be successful at alter-

ing the course of the cancer or because they were not

strong enough to sustain the change.

Jane: I do believe in, you know, supportive treat-

ment, at my age I wouldn't say ``no, I'd refuse any

of the treatment because the alternatives are not

really proven results'' but I don't think I want to

risk it, to be honest.

Mobilising was most bene®cial when participants set

goals that usually meant doing whatever they thought

necessary to ful®l previous dreams or ideals.

Frank: Well you think to yourself, I'd always set

meself a plan with the grandkids and I thought,

well I never completed what I had in mind. You

think to yourself well I'd like to have done this

with the grandkids or somebody else, and ah, you

can't.

Getting on with things also involved participants

`connecting', by reaching out to a wide-ranging net-

work of family, friendships and other support systems

that nurtured positivity, provided acceptance and


encouragement and generated feelings of hope and

love. Participants believed that friends who stayed

faithful were important sources of support. This sup-

port lessened negative attitudes, such as depression

and hopelessness.

Jane: They said ... they knew I'd get better and

they'd come up and give me a hug and this sort of

thing.

Maggie: Well I had support ... with friends ringing

me up and giving me support.

Connecting demonstrated through physical support

and `being there', such as through workmates and

family, touched participants' spirit and signi®cantly

improved the way they felt about themselves.

Jane: I've gone back now [to part-time work] I

mean that alone shows that she [boss] really cares

... my husband and I separated nearly two years

ago and we still have a good relationship really ...

he's supportive, I know that he's there, if I really

needed him. But my children have been wonderful,

my son and daughter. They've been supportive. I

think it's marvellous. If that didn't happen, I don't

know, you'd feel terribly, you'd feel very isolated. It

would be terribly hard to feel positive. You'd think,

if people don't care and no-one wants to help you,

well I may as well be dead, you would think ``all

right then, it's cancer, okay I'll die'', that's how

you'd feel. But I don't feel like that, because, um,

all the support I've got around me.

Connecting was also demonstrated when health

carers were perceived to be supportive through the

qualities of their caring activities.

Kent: Everything she did, particularly the way she

spoke was nicer, quieter, brighter, she had that

lovely way about her ... I thought she was marvel-

lous. It made me feel very good, things like that

can touch me almost to tears. She turned correctly,

beautiful, and as matter of fact when I had me arm

down her back I would have loved to have hugged

her, but I knew I couldn't and shouldn't ... it was

treatment like that, that sort of thing you know,

that touched me. She did it properly. That means

something.

`Connecting' held particular importance for partici-

pants with altered body image, such as those who suf-

fered hair loss as a result of chemotherapy or women

who had had a mastectomy.

Sharn: Awkwardness, I still feel awkward. I still

turn my back when I'm getting undressed I think

it's embarrassment, shame, it's a pretty awful sight.I feel like Cyclops but I'm really looking forward to

getting a reconstruction done and I feel that will

help a lot. I feel, you know, when I take my pros-thesis o� I sort of stoop my shoulders and I always,

I used to sleep with nothing on and now I always

have my clothes on. I just [crying] don't want himto see. I don't want anyone else to see it.

Being connected by being accepted (particularly bytheir spouses) in spite of their loss contributed posi-

tively to participants' feelings of self-worth and spiri-

tual intactness.

Jane: He's always been a great support but I could

understand if he didn't want to have anything moreto do with me. Because it happens all the time, you

know. Your hair, losing your hair, it's all very

much part of your body image, and ah, you expectrejection because of that, the fact that I haven't had

it is unbelievable [laughs].

In the process of connecting, participants were often

amazed by the amount of support they received (from

work mates, family and even people they did not knowwell) and their own responses to it.

A few participants explored religion as a way of

connecting. For most participants, however, the reli-

gious dimension was not well articulated and usuallymeant prayer, meditation, listening and talking and

was aligned with concepts such as, God, `JC', angels, a

Higher Being, inner feelings, doing good deeds andleading a good life. Participants were often touched by

the religiously based thoughtfulness and actions of

others.

Sharn: I haven't been really very religious so I

don't sort of really know what to do to be religious,but [crying] so many people keep saying they'll pray

for me and that, and I think well if everyone else is

[sobbing] perhaps I should be too. So many of myfriends ... they openly say to me they'll pray for me.

But it makes me feel that obviously they think

enough of me, that they should think of me.

Participants connected with their own cancer experi-

ence by focusing on other people with cancer. Thisdeveloped as they became immersed in a world where

people routinely talked about cancer. Participants

found listening to another person's fears helped themto better understand their own from the perspective of

a common understanding. These activities also helped

them realise they were not alone.

Ronnie: Well when ya sittin' in the waitin' room ya


think oh well, there are more people here than yathink there is, that's the ®rst time I've ever realised

there's that many people with cancer.

Trina: Whereas when you've had cancer, that's in®l-

trated your body, and this person here, it's in®l-trated hers, so you know, it's a bond that is unlikeanything else. It really is. Um, you can relate a lot

more to people like that. Because what you havegone through, they are now going through.

Alfred: I think of other people with it [cancer].

8. Transacting self-preservation: putting it all together

As shown in Fig. 1, putting it all together involvedparticipants `creating meaning' in their terminal cancer

experience and `discovering self'. Creating meaningrefers to the time when participants reached a turningpoint and took full stock of their life for the ®rst time.

Meaning and purpose in their experiences wereenriched and enhanced through gaining insight, chan-ging their outlook on life, dealing with un®nishedbusiness where possible and getting on with living

more fully.When participants gained insight, they often

expressed this as a change of attitude toward material-

ism, a sense of being grateful for their life and of beingbetter o� than others with physical su�ering. Thischange in self, as a result of the impact of cancer on

their life span that was now considered ``too short'',was re¯ected by participants' altered approach tofamily who became more enjoyable and meaningful tothem. Ken re-examined the meaning in his life because

of the expectations of incapacitating complications.

Kent: I fear the outcome, that it will transform mefrom what I am to something else, just more like a,a little old man walking around in a vegetable state.

As participants changed their outlook on life, they

wanted more from it. Whereas they once were indif-ferent to participating in life activities, having cancercaused them to take every opportunity life o�ered

and to make the most of what was left of it. In chan-ging their outlook on life, participants showed areluctance to involve themselves in trivia because

``life's too short''. This also caused some participantsto experience a renewed strength and preciousness forliving.

Bettina: Well, I'm more strong of living than before

now, before I had the cancer, want more things in

life than I wanted before, you know. Probably

more outlook on life. I want more out of life, you

know, probably because before I was scared I was

going to die maybe. I think you sort of hold on to

life. It becomes more strongly than things like argu-

ments and material things. It keeps me going.

The process of creating meaning of their illness also

gave participants a sense of empowerment and con®-

dence.

Trina: That's another thing that I've, I was never

like that before, Ohhh, I wouldn't say boo to a

goose ... I was so conscious of not upsetting

people and really sort of, going out of my way to,

not to upset anything. Not anymore. Life is too

short. You can't a�ord to do it ... So that's a con®-

dence.

The other element of putting it all together was dis-

covering self, that incorporated forgiveness, transcend-

ing, transforming, becoming spiritual, and expanding

consciousness. Although Jane harboured resentment

before her cancer diagnosis, she was prepared to work

on forgiveness of others in order to enhance her life

and experience of cancer. Forgiveness often related to

reconciling family matters or bringing the family

together.

Ronnie: ... about 12 months ago we had a going

out, you know, he [son] blasted the hell out a me

for no reason whatsoever so I told him where to go

and away he went and the eldest bloke rang 'im up

and told him I had cancer and was in hospital so

then he rang me up and apologised over the phone,

and I accepted it ... that's one good thing that's

come out of it [cancer], you know. You don't

wanna argue with your family.

Trina: Whereas before I was a mum. And a house-

wife. And, the housewifely duties and things,

`mummy' things, I thought that was my role, any-

thing else, okay I can do that but that can come

afterwards. ... But also with the children. I ®nd that

I'm a lot closer to them. It's not that I wasn't

before, see they're the kids, now they are mates,

you know. Before I would have been too busy [to

sit and talk] doing ironing and washing, whereas

now I take more time with them.

For Kate, transcendence occurred when she faced

death on several occasions from complications follow-

ing cancer treatment and was derived from the support


of Christians who surrounded her at these crucial

times.

Kate: There were Christians around me in hospital,

every time I got really ill there was a Christian. I

had a cardiac arrest one night and the woman in

the bed next to me was a Christian. There was

another time my BP was 40 over nothing and a

male nurse asked me ``do you believe in the power

of prayer'' and I said ``yes I do actually''. The most

critical times when I had a full on ®t, and then that

night I had a rigor and Rick (husband) was there

and my temperature went up to 42 something

degrees and all the lights were out but the little one

over the bed, I looked up and said `Ì can see the

angels, they're coming to get me''. I didn't know

what the protocol was for dying, `àm I doing this

right'' and um, then I thought I started praying.

Trina's transformation was demonstrated by her

new found self-con®dence and self-esteem that gener-

ated a determination to succeed in other areas of her

life that she had not earlier tried because of a devotion

to the needs of her family.

Trina: I'm more positive about myself. Its given me

more self-esteem. I've got a lot more con®dence in

myself.

Some participants engaged in putting it all together

by `becoming spiritual'.

Jane: Well, I think it [cancer] brings people closer

together because you sort of have more openness

from people. It helps you relate to other people. It

means, you know, we're all spiritual people, what-

ever words you want to use, and we're all here for

di�erent reasons, but we're all part of the same

spirit I suppose, you might call it God, or universe,

or whatever you talk about, and I think that makes

you realise there's a bond.

Trina said that for her, spiritual bonding occurred

because she was more open to spiritual experiences

through prayer that both strengthened and exalted her.

Awareness that other people cared and prayed for her

meant she did not have to `®ght it alone'. Trina's ex-

perience of becoming spiritual and of spiritual bonding

with others was typical of the experience of many par-

ticipants.

Becoming spiritual as an aspect of discovering self

also involved thinking about life after death from a

spiritual perspective, rather than as the physical act of

dying. At her place of work, Jane had been present at

the death of many people that led her to believe ``they

see people from the other side''. For Jane, becoming

spiritual included an acceptance of a life after deathand of connecting with others after death.

Jane: Like, well I suppose we all think we're goingto live forever. And we do actually, I think we do

live forever ... in a changed form. I still don't knowquite what to expect but I suppose I've lost alot of fear because I ®rmly believe that it seemswhen people have passed on, the relatives I think,

will be around, someone's going to be there who weknow.

Other participants who did not `become spiritual'viewed death as a time of reckoning or as a ®nality.

Ronnie: He [God] will say now why didn't you do

this and why didn't you do that, that's when I'llmake me peace with him.

Frank: No, I think when your dead your dead andthat's all there is to it.

9. Transacting self-preservation: intervening conditions

While the process of transacting self-preservationfollowing a diagnosis of terminal cancer was an inten-sely personal one, common threads in the experience

can be seen, that is, taking it all in, getting on withthings and putting it all together. Each of these com-monalities were mediated at the individual level by a

number of intervening conditions (see Fig. 1). Thesewere attitudes, support, age, gender, experience/knowl-edge and faith.Participants' attitudes varied from `hopelessness' to

feeling `hopeful' and from an èncumbrance' to beingùseful'. These attitudes a�ected their viewpoint aboutthe diagnosis of cancer, death and dying, doctors, nur-

sing sta�, support and the self. Participants' attitudeswere in¯uenced by others' `negativity' and `positivity'.Support was either perceived to be lacking or came

from a `connectedness' with others. When others'approaches were perceived to be positive, this wasaligned with support because it increased the partici-pants' own positivity and sense of hope. Negative atti-

tudes of others were considered to be non-supportiveand created negative feelings and beliefs in participantstoward their terminal cancer and aspects of self.

In this study, two distinct age groups were found,that is, those younger than 71 and those between 71and 90 years of age. Participants from both age groups

aspired to self-preservation using di�erent approaches.The 71±90 year old group were more resigned to theirapproaching death as an end to their existence on


earth. This group thought they were already `near the

end' of their lives and, therefore, were more able tojustify their cancer as cause for death and were lesslikely to feel cheated of a full life. They had a degree

of anticipation and expectancy of death associatedwith the knowledge of having already accomplishedthings meant to be done over time. This group focused

on their achievements such as getting married, havingchildren, seeing their grandchildren grow up, being

successful in business and providing for their family.For participants under the age of 71, facing prema-

ture death from terminal cancer held di�erent mean-

ings and their approaches to self-preservation di�ered.This group dwelt on ùn®nished business' such as see-

ing their children marry and grandchildren grow up.Achieving in their professional life was also important.Participants sought opportunities to complete un®n-

ished business and to minimise their losses as a resultof not living a full life. Age, for this group, was a driv-ing force to `®ght' the cancer illness by, for example,

undertaking extensive treatment.Gender also a�ected the way that participants trans-

acted self-preservation, mainly in relation to their roleand responsibilities in the family and society and, inparticular, in relation to the limitations imposed upon

them from the progression of the cancer. Males wereoften frustrated by the restrictions incurred by thecourse of their cancer. Women questioned their

responsibilities and made changes to them. Genderalso in¯uenced participants' attitude to treatment.

Female participants commonly feared rejection frompartners because of a loss of sexuality, while maleswere more concerned with rejection from their own

gender.Participants' experience/knowledge was either ìn-

adequate' or àdequate' and the degree of accuracyvaried. Experience/knowledge gained from exposure tocancer mostly painted a negative picture of the cancer

experience, particularly in relation to death and dying,although these perceptions were usually not supportedby their own experience. Participants gained experi-

ence/knowledge through seeing or hearing about theexperiences of other people (usually friends and rela-

tives) who had cancer. Some participants were exposedto cancer through their profession as health carers. Inthis case, they developed greater awareness of current

methods of pain relief and visualised a clearer pictureof death and dying as a peaceful rather than painfulexperience. Some participants based their understand-

ing of cancer on media anecdotes. Others sought medi-cal texts that gave information about their particular

type of cancer. Several participants claimed to haveraised questions with their doctors in order to be betterinformed of the consequences of cancer. In this case,

participants' awareness of treatment and knowledge ofits side-e�ects and of the progression of the cancer ill-

ness increased. Nevertheless, desperation cloudedrational thinking and statements about `being

informed' were often ambiguous and re¯ected confusedfeelings. Participants' initial diagnoses of cancer and itsprogression also contributed to their experience/knowl-

edge and in¯uenced their responses to further episodes.When participants thought they were well informed,for example, of treatment side e�ects, this added

strength to their beliefs in a positive way and theywere more inclined to go through the phases of trans-acting self-preservation more quickly and therefore,

move more quickly toward a greater spiritual aware-ness.A sense of self-preservation also arose from partici-

pants' faith, expressed as self-faith, faith in others and/

or a faith in God or another Higher Being. Theyrestored self-faith when friends, family and spousewere positive. These behaviours, as demonstrations of

caring, were taken as indicators of the valuable contri-bution that participants made to their family and tosociety. Participants were united in their belief that

developing a strong faith in their doctor, self, treat-ment, and/or God or another Higher Being was im-portant. These sources of strength impacted positively

on coping strategies and underpinned the richness andmeaning that participants gave to their experiences.

10. Discussion

When a person confronts a crisis, its impact oftenleads that person to seek reasons for the crisis and togive meaning to its intrusion in their life. This study

has shown that the search for meaning in the terminalcancer experience arises from the person's need forself-preservation. Transacting self-preservation is madecomplete as the person reaches a deeper level of under-

standing of self that is imbued with spiritual growthembodied in a deeper sense of spiritual perspective, anenhanced sense of spiritual awareness and recognition

and acceptance of the value of the spiritual experiencesof others, God or another Higher Being. This deepersense of spirituality incorporates more than a biopsy-

chophysical awareness of the cancer illness and its out-comes. It gives deep meaning and richness to theperson's life as they transcend their everyday experi-ence in their journey to their inevitable and untimely

death. In the process of this spiritual enrichment, theperson with terminal cancer draws on the spiritualintactness and intensity of others and enriches their

spiritual dimensions as well.Previous studies of spirituality have been heavily

in¯uenced by a Christian perspective, or were underta-

ken in institutions that endorsed a speci®c Christianphilosophy. Participants were almost exclusivelyChristian, or held other religious beliefs. In contrast,


this study has investigated the secular world, has not

been founded exclusively on Christian concepts of

spirituality and has focused on a speci®c population,

that is, people with terminal cancer without pre-de®n-

ing them in terms of their religiosity or religious

beliefs. As Narayanasamy (1996) has proposed, the

belief that spirituality is inherent only in formalised

religion promotes the notion that spiritual needs are

absent from people with no religious a�liation.

McSherry (1996) has argued that this view of spiritual-

ity excludes, for example, atheists, humanists, agnostics

and many others. The ®ndings of this study support

the view that, in the process of transacting self-preser-

vation following a diagnosis of terminal cancer, a dee-

per spiritual perspective develops regardless of a

person's religious/non-religious beliefs.

This study contributes to our greater understanding

of spirituality and people with terminal cancer. The

®ndings help to resolve confusion about spirituality by

articulating a broader view of a person's `spiritual per-

spective' and provide support for other explanations of

how people with terminal cancer make sense of the ex-

perience. For example, transacting self-preservation via

taking it all in, getting on with things and putting it all

together has similarities with the proposal of Simsen

(1988) that people are continuously wanting to `` ...

`make sense' of their circumstances ... `get through'

their experience ... [and] `move on' ... '' (p. 31). The

®nding that a person's openness to their own spiritual-

ness develops and increases as transacting self-preser-

vation proceeds re¯ects the point of Stiles (1990) that

one's own spirituality is experienced when a person is

open and receptive to it. The processes that lead to

transacting self-preservation are similar to the stages of

grief described by KuÈ bler-Ross (1969) and actual and

anticipatory grief outlined by Georgesen and Dungan

(1996) (although acknowledgment is given that these

theories have been thoroughly criticised since their

publication). These authors' theories support the pro-

posal that terminal cancer prompts a person to engage

in spiritual re¯ection and that this happens within the

limitations of speci®c individual coping strategies

described in the three phases of transacting self-preser-

vation.

Nurses must recognise that people with terminal

cancer need help to ®nd spiritual meaning in their

terminal cancer illness experience, as they proceed

through the process of transacting self-preservation.

The nurse may help clients during this process by

engaging in behaviours that enhance the person's self-

esteem and self-con®dence and that help the person re-

alise their wholeness through self-actualisation

(Robbins, 1989). Other behaviours include providing

support and encouragement (connectedness) with

others, meeting the need for intimacy with God or

another Higher Being and encouraging positivenessand a sense of hope.

Nurses also need to be sensitive to their clients'understanding of their diagnosis and prognosis. Theyneed to be prepared to provide accurate information

about their clients' management and readily answerquestions about their progress and they need to do soin a way that is sensitive to the ability of the person to

make sense of that information. Even when the out-come is death, nurses can provide a positive context inwhich the client can prepare for their death and deal

with issues that help them to conclude `un®nishedbusiness'. Nurses also need to understand their ownspirituality in order to help their clients in their spiri-tual development.

Above all, and as participants indicated, nursesshould not be judgemental about the decisions thatparticipants make. Rather, they need to be supportive

and keep a positive attitude to their clients' health ac-tivities. In this context, clients' decision-making in re-lation to choices of cancer treatment and care needs

support from nurses. Nurses can also help clientsdevelop e�ective coping strategies and they can provideholistic care by involving the family in their loved

one's spiritual care. Nurses can best do this by beingaware of spiritual resources and their availability.Nurses' spiritual support may mean nothing more

than taking the time to provide physical and psycho-

logical caring that touches the spirit. These activitiesmight include providing basic hygiene needs, buttoningup a pyjama top correctly and calling the client by

name. In the busyness of `saving lives', nurses need toreconsider the importance of these basic human needsto a person who is transacting self-preservation as they

face the ®nal stages of their life, that is, their death.It is important that nurses acknowledge and accept

that some people may ®nd it di�cult to articulate theirspirituality. When this happens, nurses should remem-

ber that spirituality re¯ects the whole person and,therefore, they may need to help the person exploretheir attitudes, beliefs and values. To achieve this,

nurses need to convey a sense of respect and sensitivitytoward their patients' beliefs and attitudes and themeanings they attach to their experiences. Other health

care professionals also need to pay more attention tothe emotional consequences of cancer that impact onthe person's spiritual well-being.

11. Conclusion

There is no denying the importance of a spiritualdimension that gives meaning to the everyday experi-

ences of people with terminal cancer. These peopleencounter an urgency to explore their sense of meaningin life, in the face of their impending death. As a


major avenue of support for those with terminal can-cer, nurses need to provide them with hope and posi-

tive expectations that re¯ect their own spiritualawareness. If these expectations are to be met, it is im-portant that nurses deal with their own spirituality and

feelings about death.

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