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Transacting self-preservation: a grounded theory of the spiritual dimensions of people with terminal cancer
International Journal of Nursing Studies 36 (1999) 191±201
Transacting self-preservation: a grounded theory of the spiritual dimensions of people with terminal cancer Joan Thomas a,*, Andrew Retsas b a
21 Greg Norman Crescent, Parkwood, Qld 4214, Australia RMIT ± Nursing and Austin and Repatriation Medical Centre, Melbourne, Australia
b
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 of grounded theory. The study found that people with terminal cancer develop a spiritual perspective that strengthens their approaches to life and death. Their discovery of spiritual meaning is enacted through a process of transacting self-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 discovering deeper levels of understanding self. This discovery of self incorporates a higher level of spiritual growth, spiritual perspective, 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 spiritual caring 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, forgiveness, reconciliation, and meaning in life (McGlone, 1990; Taylor and Ferszt, 1990; Widerquist, 1992). Spirituality is also sometimes considered a basic determinant 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 personal growth that culminates in a deep sense of inter-
* Corresponding author. E-mail addresses: [email protected] (J. Thomas), [email protected] (A. Retsas)
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 everyday 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
0020-7489/99/$ - see front matter # 1999 Elsevier Science Ltd. All rights reserved. PII: S 0 0 2 0 - 7 4 8 9 ( 9 9 ) 0 0 0 1 2 - 7
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of their patients' needs (Lane, 1987; Trice, 1990; Di Meo, 1991; Corrine et al., 1992). One group for whom spirituality is an important aspect needing deeper understanding is people with terminal cancer (O'Connor et al., 1990). However, there is virtually no research that describes the relationship between a person with terminal cancer and their spirituality. `Transacting self-preservation' is a process that re¯ects people's ways of ®nding spiritual meaning in their experiences of terminal cancer and how they achieve deeper levels of spirituality during the three phases of this process. These phases incorporate `taking it all in', `getting on with things' and `putting it all together', that describe coping strategies people with terminal cancer use to overcome the barriers that hinder the discovery of a meaningful existence when facing death. Transacting self-preservation implies deeper levels of understanding self through spiritual growth, spiritual perspective, spiritual awareness and spiritual experiences. 2. Study purpose The purpose of this study was to construct a grounded theory that explains how the spirituality of people with terminal cancer develops as they make sense of and come to terms with their diagnosis. The study was underpinned by a desire to establish answers to questions such as: What are the spiritual experiences of people with terminal cancer? How do people with terminal cancer create meaning and purpose in their living and dying processes? and How can this meaning be understood from a spiritual perspective? The study was based on an assumption that spiritual matters become more signi®cant and the degree to which people focus on other matters in their life become less important when they are aware of their approaching death from cancer. This assumption was based on the authors' professional and personal experiences with people who have terminal cancer. A diagnosis of terminal cancer was believed to prompt the suerer to engage in spiritual re¯ection and to consciously develop an openness to spiritual experiences and their own spirituality as a way of making sense of their impending death. 3. The sample The sample (n=19; female=12; males=7) consisted of voluntary participants who had a diagnosis of terminal cancer, were between 30 and 90 years of age and had sucient English pro®ciency to allow communication with the researcher. The purposive sample meant that participants were selected on the basis they
could provide insight into the phenomena being studied and was developed mainly through `snowballing', that is, by one person introducing another to the study. At initial contact, participants were informed of the nature and purpose of the study, were free to withdraw at any time and were able to access counselling assistance should the study prove distressing to them (no participant required this assistance). Grith University's Human Experimentation Research Committee provided ethical approval.
4. Data collection and analysis For this study, grounded theory was used because it could help the researcher understand and give meaning to the spiritual aspects of people with terminal cancer by `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 they emerged from their own detailed accounts (Parse et al., 1985; Burns and Grove, 1987). Once agreement to participate was obtained, interviews were arranged with participants, almost always in their own homes at a time convenient to themselves and when interruptions from family members were minimal. Most interviews lasted between 1±2 h and were audiotaped for later transcription. Although all but one participant (who did not comment either way) said they did not mind being named in published material, pseudonyms were used `in text' for identi®cation of transcription excerpts during analysis and discussion of ®ndings. This ensured that data were presented as personalised accounts, but in an anonymous way. An interview guide consisting of questions, such as, How would you describe the feelings you experienced when you were told that you have incurable cancer? was developed by the researcher and examined by a panel of eight `experts in the ®eld' of acute cancer and/ or palliative care. These questions were used to guide conversation during the in-depth interviews and were modi®ed during the course of the data collection according to whether participants demonstrated a desire to extend conversation or were reluctant to do so. After the ®rst two interviews the interview guide was found to be unnecessary. Participants were more relaxed and spoke more freely when the interview guide was not in use. To keep on track, the researcher used an `aid memoire' (Minichiello et al., 1990) or a list of speci®c topics, for example, attitudes and behaviours, to guide interview questions and aid data collection. At each initial individual interview the participant was asked to choose key words from a list comprising words such as hope, forgiveness, cancer,
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Fig. 1. Merging categories and subcategories to form a core category using the paradigm model during selective coding.
death, dying, reconciliation, faith and belief. This initiative created a relaxed environment, established sensitivity 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 interviews. 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.
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Data were analysed using the constant comparative method of analysis described by Strauss and Corbin (1990), in order to generate a grounded theory of the phenomena being explained. This approach of simultaneously collecting and analysing data has now been well described in the nursing literature. A paradigm model (Strauss and Corbin, 1990) helped to organise concepts, categories and subcategories, and to make connections between these and a single core category, that is, `transacting self-preservation', that emerged during the coding processes (see Fig. 1).
5. Deriving the elements of the grounded theory The data analysis process led to the identi®cation of a single unifying core category labelled `transacting self-preservation'. The grounded theory asserts that people with terminal cancer develop their spiritualness as they make sense of and come to terms with their diagnosis, and this can be understood in the context of transacting self-preservation. Evolution of this process is dependent on three dynamic and interconnected behaviours, that is, `taking it all in', `getting on with things' and `putting it all together'. While it would appear that participants worked through the process of transacting self-preservation in a step by step fashion, it is important to acknowledge that variations to the process will occur, given the ad hoc and overlapping nature of human experience.
6. Transacting self-preservation: taking it all in Taking it all in (see Fig. 1) began once the diagnosis had been made known to the participant and involved them `responding' and `questioning' their perceptions of the cancer illness and how they perceived their outcome. Responding re¯ected shock, fear, unpreparedness, denial and unacceptance of the illness and impending death. Participants commonly responded to the diagnosis of cancer with ``I couldn't come to terms with it'', ``I just couldn't believe it'' and ``[cancer] sort of sprung up ... now just deciding to turn up''. Sharn was more explicit: Sharn: It didn't sink in for ages, about the cancer ... it made me realise that it was pretty serious once I'd had the mastectomy, but I still sort of, but I still don't really, until I was reading a book and they said stage three, I was really quite shocked, I didn't think I was that serious you know, I just thought 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 everything [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 eects 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 dierent times ``not all together''. While responding, most participants found it dicult to accept or even recognise the encouragement and positivity provided by family and friends. Some participants 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 ``oh 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 frightened 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
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haven't drunk alcohol to excess, taken drugs, why should 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 participants believed that when they had not led a good life, cancer was deserved. Thus, some participants commonly spoke of their cancer as a `punishment' from God. When they believed that God gave them cancer they saw it as remedial because they needed to learn from the experience, saying that ``I needed a good shaking up''. Some participants blamed God for giving them the cancer, while others questioned their relationship with 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? ... when you see all these bank robbers and murderers going round they seem to get away with things, whereas I've not done anything like that, why should I get it.
7. Transacting self-preservation: getting on with things In getting on with things, the initial shock and adjustments of `taking it all in' had abated (but not necessarily entirely resolved) and participants were more able to confront the reality of their diagnosis. In `getting on with things', participants thought about cancer often, to the point that it permeated all aspects of their existence and governed and structured their lives. They often recounted events according to time dimensions of their experience of cancer, for example, ``before I had cancer'', ``after my chemotherapy'' and ``when I got the secondaries''. Fig. 1 demonstrates the coping strategies in this phase of transacting self-preservation when participants confronted their cancer by `mobilising' into action and by `connecting' with the self, others, God or another Higher Being. `Mobilising' involved making choices, weighing up options, taking responsibility, participating in decisions aecting them and others, taking control, setting goals and gauging future outcomes. All of these behaviours brought the reality of their cancer into a fuller and more accurate perspective and showed a change from passive to active `participation' in what was happening to them. `Mobilising' thus helped reduce participants' apprehension about the complexity and `unknowns' of the cancer illness. In the process of mobilising, participants often
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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 incorporated 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, meditation, 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 eective. 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 choosing 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 burden. For example, all participants who made lifestyle changes did so temporarily, partly because they believed there was insucient evidence that the changes they had adopted would be successful at altering the course of the cancer or because they were not strong enough to sustain the change. Jane: I do believe in, you know, supportive treatment, 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 network of family, friendships and other support systems that nurtured positivity, provided acceptance and
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encouragement and generated feelings of hope and love. Participants believed that friends who stayed faithful were important sources of support. This support 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 marvellous. 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 participants with altered body image, such as those who suffered 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 prosthesis 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 him to see. I don't want anyone else to see it. Being connected by being accepted (particularly by their spouses) in spite of their loss contributed positively to participants' feelings of self-worth and spiritual intactness. Jane: He's always been a great support but I could understand if he didn't want to have anything more to 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 expect rejection 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 know well) and their own responses to it. A few participants explored religion as a way of connecting. For most participants, however, the religious dimension was not well articulated and usually meant prayer, meditation, listening and talking and was aligned with concepts such as, God, `JC', angels, a Higher Being, inner feelings, doing good deeds and leading 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 my friends ... 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 experience by focusing on other people with cancer. This developed as they became immersed in a world where people routinely talked about cancer. Participants found listening to another person's fears helped them to 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
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think oh well, there are more people here than ya think 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®ltrated your body, and this person here, it's in®ltrated hers, so you know, it's a bond that is unlike anything else. It really is. Um, you can relate a lot more to people like that. Because what you have gone through, they are now going through. Alfred: I think of other people with it [cancer].
8. Transacting self-preservation: putting it all together
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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 arguments 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 aord to do it ... So that's a con®dence.
As shown in Fig. 1, putting it all together involved participants `creating meaning' in their terminal cancer experience and `discovering self'. Creating meaning refers to the time when participants reached a turning point and took full stock of their life for the ®rst time. Meaning and purpose in their experiences were enriched and enhanced through gaining insight, changing their outlook on life, dealing with un®nished business where possible and getting on with living more fully. When participants gained insight, they often expressed this as a change of attitude toward materialism, a sense of being grateful for their life and of being better o than others with physical suering. This change 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 to family who became more enjoyable and meaningful to them. Ken re-examined the meaning in his life because of the expectations of incapacitating complications.
The other element of putting it all together was discovering self, that incorporated forgiveness, transcending, 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.
Kent: I fear the outcome, that it will transform me from what I am to something else, just more like a, a little old man walking around in a vegetable state.
Trina: Whereas before I was a mum. And a housewife. And, the housewifely duties and things, `mummy' things, I thought that was my role, anything 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.
As participants changed their outlook on life, they wanted more from it. Whereas they once were indifferent to participating in life activities, having cancer caused them to take every opportunity life oered and to make the most of what was left of it. In changing their outlook on life, participants showed a reluctance to involve themselves in trivia because ``life's too short''. This also caused some participants to experience a renewed strength and preciousness for living.
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.
For Kate, transcendence occurred when she faced death on several occasions from complications following cancer treatment and was derived from the support
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of Christians who surrounded her at these crucial times.
spiritual included an acceptance of a life after death and of connecting with others after death.
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 ``I can see the angels, they're coming to get me''. I didn't know what the protocol was for dying, ``am I doing this right'' and um, then I thought I started praying.
Jane: Like, well I suppose we all think we're going to live forever. And we do actually, I think we do live forever ... in a changed form. I still don't know quite what to expect but I suppose I've lost a lot of fear because I ®rmly believe that it seems when people have passed on, the relatives I think, will be around, someone's going to be there who we know.
Trina's transformation was demonstrated by her new found self-con®dence and self-esteem that generated 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, whatever words you want to use, and we're all here for dierent 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 experience of becoming spiritual and of spiritual bonding with others was typical of the experience of many participants. 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
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'll make me peace with him. Frank: No, I think when your dead your dead and that's all there is to it.
9. Transacting self-preservation: intervening conditions While the process of transacting self-preservation following a diagnosis of terminal cancer was an intensely personal one, common threads in the experience can be seen, that is, taking it all in, getting on with things and putting it all together. Each of these commonalities were mediated at the individual level by a number of intervening conditions (see Fig. 1). These were attitudes, support, age, gender, experience/knowledge and faith. Participants' attitudes varied from `hopelessness' to feeling `hopeful' and from an `encumbrance' to being `useful'. These attitudes aected their viewpoint about the diagnosis of cancer, death and dying, doctors, nursing sta, support and the self. Participants' attitudes were 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 was aligned with support because it increased the participants' own positivity and sense of hope. Negative attitudes of others were considered to be non-supportive and created negative feelings and beliefs in participants toward 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 71 and 90 years of age. Participants from both age groups aspired to self-preservation using dierent approaches. The 71±90 year old group were more resigned to their approaching death as an end to their existence on
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earth. This group thought they were already `near the end' of their lives and, therefore, were more able to justify their cancer as cause for death and were less likely to feel cheated of a full life. They had a degree of anticipation and expectancy of death associated with the knowledge of having already accomplished things meant to be done over time. This group focused on their achievements such as getting married, having children, seeing their grandchildren grow up, being successful in business and providing for their family. For participants under the age of 71, facing premature death from terminal cancer held dierent meanings and their approaches to self-preservation diered. This group dwelt on `un®nished business' such as seeing their children marry and grandchildren grow up. Achieving in their professional life was also important. Participants sought opportunities to complete un®nished business and to minimise their losses as a result of not living a full life. Age, for this group, was a driving force to `®ght' the cancer illness by, for example, undertaking extensive treatment. Gender also aected the way that participants transacted self-preservation, mainly in relation to their role and responsibilities in the family and society and, in particular, in relation to the limitations imposed upon them from the progression of the cancer. Males were often frustrated by the restrictions incurred by the course of their cancer. Women questioned their responsibilities and made changes to them. Gender also in¯uenced participants' attitude to treatment. Female participants commonly feared rejection from partners because of a loss of sexuality, while males were more concerned with rejection from their own gender. Participants' experience/knowledge was either `inadequate' or `adequate' and the degree of accuracy varied. Experience/knowledge gained from exposure to cancer mostly painted a negative picture of the cancer experience, particularly in relation to death and dying, although these perceptions were usually not supported by their own experience. Participants gained experience/knowledge through seeing or hearing about the experiences of other people (usually friends and relatives) who had cancer. Some participants were exposed to cancer through their profession as health carers. In this case, they developed greater awareness of current methods of pain relief and visualised a clearer picture of death and dying as a peaceful rather than painful experience. Some participants based their understanding of cancer on media anecdotes. Others sought medical texts that gave information about their particular type of cancer. Several participants claimed to have raised questions with their doctors in order to be better informed of the consequences of cancer. In this case, participants' awareness of treatment and knowledge of its side-eects and of the progression of the cancer ill-
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ness increased. Nevertheless, desperation clouded rational thinking and statements about `being informed' were often ambiguous and re¯ected confused feelings. Participants' initial diagnoses of cancer and its progression also contributed to their experience/knowledge and in¯uenced their responses to further episodes. When participants thought they were well informed, for example, of treatment side eects, this added strength to their beliefs in a positive way and they were more inclined to go through the phases of transacting self-preservation more quickly and therefore, move more quickly toward a greater spiritual awareness. A sense of self-preservation also arose from participants' faith, expressed as self-faith, faith in others and/ or a faith in God or another Higher Being. They restored self-faith when friends, family and spouse were positive. These behaviours, as demonstrations of caring, were taken as indicators of the valuable contribution that participants made to their family and to society. Participants were united in their belief that developing a strong faith in their doctor, self, treatment, and/or God or another Higher Being was important. These sources of strength impacted positively on coping strategies and underpinned the richness and meaning that participants gave to their experiences. 10. Discussion When a person confronts a crisis, its impact often leads that person to seek reasons for the crisis and to give meaning to its intrusion in their life. This study has shown that the search for meaning in the terminal cancer experience arises from the person's need for self-preservation. Transacting self-preservation is made complete as the person reaches a deeper level of understanding of self that is imbued with spiritual growth embodied in a deeper sense of spiritual perspective, an enhanced sense of spiritual awareness and recognition and acceptance of the value of the spiritual experiences of others, God or another Higher Being. This deeper sense of spirituality incorporates more than a biopsychophysical awareness of the cancer illness and its outcomes. It gives deep meaning and richness to the person's life as they transcend their everyday experience in their journey to their inevitable and untimely death. In the process of this spiritual enrichment, the person with terminal cancer draws on the spiritual intactness 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 undertaken in institutions that endorsed a speci®c Christian philosophy. Participants were almost exclusively Christian, or held other religious beliefs. In contrast,
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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®ning 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 aliation. McSherry (1996) has argued that this view of spirituality excludes, for example, atheists, humanists, agnostics and many others. The ®ndings of this study support the view that, in the process of transacting self-preservation following a diagnosis of terminal cancer, a deeper 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 perspective' and provide support for other explanations of how people with terminal cancer make sense of the experience. 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 spiritualness develops and increases as transacting self-preservation 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 KuÈbler-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 proposal 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-preservation. 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 selfesteem and self-con®dence and that help the person realise 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 positiveness and a sense of hope. Nurses also need to be sensitive to their clients' understanding of their diagnosis and prognosis. They need to be prepared to provide accurate information about their clients' management and readily answer questions about their progress and they need to do so in a way that is sensitive to the ability of the person to make sense of that information. Even when the outcome is death, nurses can provide a positive context in which the client can prepare for their death and deal with issues that help them to conclude `un®nished business'. Nurses also need to understand their own spirituality in order to help their clients in their spiritual development. Above all, and as participants indicated, nurses should not be judgemental about the decisions that participants make. Rather, they need to be supportive and keep a positive attitude to their clients' health activities. In this context, clients' decision-making in relation to choices of cancer treatment and care needs support from nurses. Nurses can also help clients develop eective coping strategies and they can provide holistic care by involving the family in their loved one's spiritual care. Nurses can best do this by being aware of spiritual resources and their availability. Nurses' spiritual support may mean nothing more than taking the time to provide physical and psychological caring that touches the spirit. These activities might include providing basic hygiene needs, buttoning up a pyjama top correctly and calling the client by name. In the busyness of `saving lives', nurses need to reconsider the importance of these basic human needs to 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 dicult to articulate their spirituality. When this happens, nurses should remember that spirituality re¯ects the whole person and, therefore, they may need to help the person explore their attitudes, beliefs and values. To achieve this, nurses need to convey a sense of respect and sensitivity toward their patients' beliefs and attitudes and the meanings they attach to their experiences. Other health care professionals also need to pay more attention to the emotional consequences of cancer that impact on the person's spiritual well-being. 11. Conclusion There is no denying the importance of a spiritual dimension that gives meaning to the everyday experiences of people with terminal cancer. These people encounter an urgency to explore their sense of meaning in life, in the face of their impending death. As a
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major avenue of support for those with terminal cancer, nurses need to provide them with hope and positive expectations that re¯ect their own spiritual awareness. If these expectations are to be met, it is important that nurses deal with their own spirituality and feelings about death. References Amenta, M., Bohnet, N.L., 1986. Nursing Care of the Terminally Ill. Little Brown, Boston. Burns, N., Grove, S., 1987. The Practice of Nursing Research: Conduct, Critique and Utilization. Saunders, Philadelphia. Corrine, L., Bailey, V., Valentin, M., Morantus, E., Shirley, L., 1992. The unheard voices of women: Spiritual interventions in maternal±child health. American Journal of Maternal Child Nursing 17 (3), 141±145. Di Meo, E., 1991. Patient's advocate, Rx for spiritual distress. A guide to religious practices. RN 54 (3), 22±24. Georgesen, J., Dungan, J.M., 1996. Managing spiritual distress in patients with advanced cancer pain. Cancer Nursing 19 (5), 376±383. Hiatt, J.F., 1986. Spirituality, medicine, and healing. Southern Medical Journal 79 (6), 736±743. Hover-Kramer, D., 1989. Creating a context for self-healing: The transpersonal perspective. Holistic Nursing Practice 3 (3), 27±34. Johnson, P., 1991. Conquering Cancer: an Invitation to Hope. Zondervan, Grand Rapids, MI. KuÈbler-Ross, E., 1969. On Death and Dying. Macmillan, New York. Lane, J.A., 1987. The care of the human spirit. Journal of Professional Nursing 3 (6), 332±337. McGlone, M.E., 1990. Healing the spirit. Holistic Nursing Practice 4 (4), 77±84.
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McSherry, W., 1996. Raising the spirits .. spiritual assessment. Nursing Times 92 (3), 48±49. Minichiello, V., Aroni, R., Timewell, E., Alexander, L., 1990. In-Depth Interviewing: Researching People. Longman Cheshire, Melbourne. Narayanasamy, A., 1996. Spiritual care of chronically ill patients. British Journal of Nursing 5 (7), 411±416. O'Connor, A.P., Wicker, C.A., Germino, B.B., 1990. Understanding the cancer patient's search for meaning. Cancer Nursing 13 (3), 167±175. Parse, R.R., Coyne, A.B., Smith, M.J., 1985. Nursing Research: Qualitative Methods. Prentice-Hall, MD. Peck, M.S., 1993. Further along the Road less Travelled: the Unending Journey toward Spiritual Growth. Simon and Schuster, Sydney. Robbins, S., 1989. Organizational Behaviour, Concepts, Controversies, and Applications, 4th ed. Prentice-Hall, Englewood Cli. Simsen, B., 1988. Nursing the spirit .. meeting patients' spiritual needs. Nursing Times 84 (37), 31±33. Stiles, M.K., 1990. The shining stranger: Nurse±family spiritual relationship. Cancer Nursing 13 (4), 235±245. Strauss, A., Corbin, J., 1990. Basics of Qualitative Research: Grounded Theory Procedures and Techniques. Sage, London. Taylor, P.B., Ferszt, G.G., 1990. Spiritual healing. Holistic Nursing Practice 4 (4), 32±38. Thomas, J.M., 1997. Giving spiritual meaning to the experiences of people with terminal cancer: a grounded theory of self-preservation. Unpublished master's thesis, Grith University, Gold Coast Campus, Gold Coast, Australia. Trice, L.B., 1990. Meaningful life experience to the elderly. IMAGE: Journal of Nursing Scholarship 22 (4), 248±251. Widerquist, J.G., 1992. The spirituality of Florence Nightingale. Nursing Research 41 (1), 49±55. Wilson, H.S., 1989. Research in Nursing, 2nd ed. AddisonWesley, Redwood, CA.
Transacting self-preservation: a grounded theory of the spiritual dimensions of people with terminal cancer Joan Thomas a,*, Andrew Retsas b a
21 Greg Norman Crescent, Parkwood, Qld 4214, Australia RMIT ± Nursing and Austin and Repatriation Medical Centre, Melbourne, Australia
b
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 of grounded theory. The study found that people with terminal cancer develop a spiritual perspective that strengthens their approaches to life and death. Their discovery of spiritual meaning is enacted through a process of transacting self-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 discovering deeper levels of understanding self. This discovery of self incorporates a higher level of spiritual growth, spiritual perspective, 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 spiritual caring 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, forgiveness, reconciliation, and meaning in life (McGlone, 1990; Taylor and Ferszt, 1990; Widerquist, 1992). Spirituality is also sometimes considered a basic determinant 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 personal growth that culminates in a deep sense of inter-
* Corresponding author. E-mail addresses: [email protected] (J. Thomas), [email protected] (A. Retsas)
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 everyday 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
0020-7489/99/$ - see front matter # 1999 Elsevier Science Ltd. All rights reserved. PII: S 0 0 2 0 - 7 4 8 9 ( 9 9 ) 0 0 0 1 2 - 7
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of their patients' needs (Lane, 1987; Trice, 1990; Di Meo, 1991; Corrine et al., 1992). One group for whom spirituality is an important aspect needing deeper understanding is people with terminal cancer (O'Connor et al., 1990). However, there is virtually no research that describes the relationship between a person with terminal cancer and their spirituality. `Transacting self-preservation' is a process that re¯ects people's ways of ®nding spiritual meaning in their experiences of terminal cancer and how they achieve deeper levels of spirituality during the three phases of this process. These phases incorporate `taking it all in', `getting on with things' and `putting it all together', that describe coping strategies people with terminal cancer use to overcome the barriers that hinder the discovery of a meaningful existence when facing death. Transacting self-preservation implies deeper levels of understanding self through spiritual growth, spiritual perspective, spiritual awareness and spiritual experiences. 2. Study purpose The purpose of this study was to construct a grounded theory that explains how the spirituality of people with terminal cancer develops as they make sense of and come to terms with their diagnosis. The study was underpinned by a desire to establish answers to questions such as: What are the spiritual experiences of people with terminal cancer? How do people with terminal cancer create meaning and purpose in their living and dying processes? and How can this meaning be understood from a spiritual perspective? The study was based on an assumption that spiritual matters become more signi®cant and the degree to which people focus on other matters in their life become less important when they are aware of their approaching death from cancer. This assumption was based on the authors' professional and personal experiences with people who have terminal cancer. A diagnosis of terminal cancer was believed to prompt the suerer to engage in spiritual re¯ection and to consciously develop an openness to spiritual experiences and their own spirituality as a way of making sense of their impending death. 3. The sample The sample (n=19; female=12; males=7) consisted of voluntary participants who had a diagnosis of terminal cancer, were between 30 and 90 years of age and had sucient English pro®ciency to allow communication with the researcher. The purposive sample meant that participants were selected on the basis they
could provide insight into the phenomena being studied and was developed mainly through `snowballing', that is, by one person introducing another to the study. At initial contact, participants were informed of the nature and purpose of the study, were free to withdraw at any time and were able to access counselling assistance should the study prove distressing to them (no participant required this assistance). Grith University's Human Experimentation Research Committee provided ethical approval.
4. Data collection and analysis For this study, grounded theory was used because it could help the researcher understand and give meaning to the spiritual aspects of people with terminal cancer by `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 they emerged from their own detailed accounts (Parse et al., 1985; Burns and Grove, 1987). Once agreement to participate was obtained, interviews were arranged with participants, almost always in their own homes at a time convenient to themselves and when interruptions from family members were minimal. Most interviews lasted between 1±2 h and were audiotaped for later transcription. Although all but one participant (who did not comment either way) said they did not mind being named in published material, pseudonyms were used `in text' for identi®cation of transcription excerpts during analysis and discussion of ®ndings. This ensured that data were presented as personalised accounts, but in an anonymous way. An interview guide consisting of questions, such as, How would you describe the feelings you experienced when you were told that you have incurable cancer? was developed by the researcher and examined by a panel of eight `experts in the ®eld' of acute cancer and/ or palliative care. These questions were used to guide conversation during the in-depth interviews and were modi®ed during the course of the data collection according to whether participants demonstrated a desire to extend conversation or were reluctant to do so. After the ®rst two interviews the interview guide was found to be unnecessary. Participants were more relaxed and spoke more freely when the interview guide was not in use. To keep on track, the researcher used an `aid memoire' (Minichiello et al., 1990) or a list of speci®c topics, for example, attitudes and behaviours, to guide interview questions and aid data collection. At each initial individual interview the participant was asked to choose key words from a list comprising words such as hope, forgiveness, cancer,
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Fig. 1. Merging categories and subcategories to form a core category using the paradigm model during selective coding.
death, dying, reconciliation, faith and belief. This initiative created a relaxed environment, established sensitivity 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 interviews. 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.
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Data were analysed using the constant comparative method of analysis described by Strauss and Corbin (1990), in order to generate a grounded theory of the phenomena being explained. This approach of simultaneously collecting and analysing data has now been well described in the nursing literature. A paradigm model (Strauss and Corbin, 1990) helped to organise concepts, categories and subcategories, and to make connections between these and a single core category, that is, `transacting self-preservation', that emerged during the coding processes (see Fig. 1).
5. Deriving the elements of the grounded theory The data analysis process led to the identi®cation of a single unifying core category labelled `transacting self-preservation'. The grounded theory asserts that people with terminal cancer develop their spiritualness as they make sense of and come to terms with their diagnosis, and this can be understood in the context of transacting self-preservation. Evolution of this process is dependent on three dynamic and interconnected behaviours, that is, `taking it all in', `getting on with things' and `putting it all together'. While it would appear that participants worked through the process of transacting self-preservation in a step by step fashion, it is important to acknowledge that variations to the process will occur, given the ad hoc and overlapping nature of human experience.
6. Transacting self-preservation: taking it all in Taking it all in (see Fig. 1) began once the diagnosis had been made known to the participant and involved them `responding' and `questioning' their perceptions of the cancer illness and how they perceived their outcome. Responding re¯ected shock, fear, unpreparedness, denial and unacceptance of the illness and impending death. Participants commonly responded to the diagnosis of cancer with ``I couldn't come to terms with it'', ``I just couldn't believe it'' and ``[cancer] sort of sprung up ... now just deciding to turn up''. Sharn was more explicit: Sharn: It didn't sink in for ages, about the cancer ... it made me realise that it was pretty serious once I'd had the mastectomy, but I still sort of, but I still don't really, until I was reading a book and they said stage three, I was really quite shocked, I didn't think I was that serious you know, I just thought 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 everything [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 eects 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 dierent times ``not all together''. While responding, most participants found it dicult to accept or even recognise the encouragement and positivity provided by family and friends. Some participants 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 ``oh 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 frightened 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
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haven't drunk alcohol to excess, taken drugs, why should 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 participants believed that when they had not led a good life, cancer was deserved. Thus, some participants commonly spoke of their cancer as a `punishment' from God. When they believed that God gave them cancer they saw it as remedial because they needed to learn from the experience, saying that ``I needed a good shaking up''. Some participants blamed God for giving them the cancer, while others questioned their relationship with 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? ... when you see all these bank robbers and murderers going round they seem to get away with things, whereas I've not done anything like that, why should I get it.
7. Transacting self-preservation: getting on with things In getting on with things, the initial shock and adjustments of `taking it all in' had abated (but not necessarily entirely resolved) and participants were more able to confront the reality of their diagnosis. In `getting on with things', participants thought about cancer often, to the point that it permeated all aspects of their existence and governed and structured their lives. They often recounted events according to time dimensions of their experience of cancer, for example, ``before I had cancer'', ``after my chemotherapy'' and ``when I got the secondaries''. Fig. 1 demonstrates the coping strategies in this phase of transacting self-preservation when participants confronted their cancer by `mobilising' into action and by `connecting' with the self, others, God or another Higher Being. `Mobilising' involved making choices, weighing up options, taking responsibility, participating in decisions aecting them and others, taking control, setting goals and gauging future outcomes. All of these behaviours brought the reality of their cancer into a fuller and more accurate perspective and showed a change from passive to active `participation' in what was happening to them. `Mobilising' thus helped reduce participants' apprehension about the complexity and `unknowns' of the cancer illness. In the process of mobilising, participants often
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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 incorporated 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, meditation, 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 eective. 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 choosing 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 burden. For example, all participants who made lifestyle changes did so temporarily, partly because they believed there was insucient evidence that the changes they had adopted would be successful at altering the course of the cancer or because they were not strong enough to sustain the change. Jane: I do believe in, you know, supportive treatment, 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 network of family, friendships and other support systems that nurtured positivity, provided acceptance and
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encouragement and generated feelings of hope and love. Participants believed that friends who stayed faithful were important sources of support. This support 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 marvellous. 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 participants with altered body image, such as those who suffered 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 prosthesis 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 him to see. I don't want anyone else to see it. Being connected by being accepted (particularly by their spouses) in spite of their loss contributed positively to participants' feelings of self-worth and spiritual intactness. Jane: He's always been a great support but I could understand if he didn't want to have anything more to 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 expect rejection 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 know well) and their own responses to it. A few participants explored religion as a way of connecting. For most participants, however, the religious dimension was not well articulated and usually meant prayer, meditation, listening and talking and was aligned with concepts such as, God, `JC', angels, a Higher Being, inner feelings, doing good deeds and leading 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 my friends ... 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 experience by focusing on other people with cancer. This developed as they became immersed in a world where people routinely talked about cancer. Participants found listening to another person's fears helped them to 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
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think oh well, there are more people here than ya think 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®ltrated your body, and this person here, it's in®ltrated hers, so you know, it's a bond that is unlike anything else. It really is. Um, you can relate a lot more to people like that. Because what you have gone through, they are now going through. Alfred: I think of other people with it [cancer].
8. Transacting self-preservation: putting it all together
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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 arguments 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 aord to do it ... So that's a con®dence.
As shown in Fig. 1, putting it all together involved participants `creating meaning' in their terminal cancer experience and `discovering self'. Creating meaning refers to the time when participants reached a turning point and took full stock of their life for the ®rst time. Meaning and purpose in their experiences were enriched and enhanced through gaining insight, changing their outlook on life, dealing with un®nished business where possible and getting on with living more fully. When participants gained insight, they often expressed this as a change of attitude toward materialism, a sense of being grateful for their life and of being better o than others with physical suering. This change 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 to family who became more enjoyable and meaningful to them. Ken re-examined the meaning in his life because of the expectations of incapacitating complications.
The other element of putting it all together was discovering self, that incorporated forgiveness, transcending, 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.
Kent: I fear the outcome, that it will transform me from what I am to something else, just more like a, a little old man walking around in a vegetable state.
Trina: Whereas before I was a mum. And a housewife. And, the housewifely duties and things, `mummy' things, I thought that was my role, anything 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.
As participants changed their outlook on life, they wanted more from it. Whereas they once were indifferent to participating in life activities, having cancer caused them to take every opportunity life oered and to make the most of what was left of it. In changing their outlook on life, participants showed a reluctance to involve themselves in trivia because ``life's too short''. This also caused some participants to experience a renewed strength and preciousness for living.
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.
For Kate, transcendence occurred when she faced death on several occasions from complications following cancer treatment and was derived from the support
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of Christians who surrounded her at these crucial times.
spiritual included an acceptance of a life after death and of connecting with others after death.
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 ``I can see the angels, they're coming to get me''. I didn't know what the protocol was for dying, ``am I doing this right'' and um, then I thought I started praying.
Jane: Like, well I suppose we all think we're going to live forever. And we do actually, I think we do live forever ... in a changed form. I still don't know quite what to expect but I suppose I've lost a lot of fear because I ®rmly believe that it seems when people have passed on, the relatives I think, will be around, someone's going to be there who we know.
Trina's transformation was demonstrated by her new found self-con®dence and self-esteem that generated 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, whatever words you want to use, and we're all here for dierent 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 experience of becoming spiritual and of spiritual bonding with others was typical of the experience of many participants. 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
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'll make me peace with him. Frank: No, I think when your dead your dead and that's all there is to it.
9. Transacting self-preservation: intervening conditions While the process of transacting self-preservation following a diagnosis of terminal cancer was an intensely personal one, common threads in the experience can be seen, that is, taking it all in, getting on with things and putting it all together. Each of these commonalities were mediated at the individual level by a number of intervening conditions (see Fig. 1). These were attitudes, support, age, gender, experience/knowledge and faith. Participants' attitudes varied from `hopelessness' to feeling `hopeful' and from an `encumbrance' to being `useful'. These attitudes aected their viewpoint about the diagnosis of cancer, death and dying, doctors, nursing sta, support and the self. Participants' attitudes were 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 was aligned with support because it increased the participants' own positivity and sense of hope. Negative attitudes of others were considered to be non-supportive and created negative feelings and beliefs in participants toward 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 71 and 90 years of age. Participants from both age groups aspired to self-preservation using dierent approaches. The 71±90 year old group were more resigned to their approaching death as an end to their existence on
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earth. This group thought they were already `near the end' of their lives and, therefore, were more able to justify their cancer as cause for death and were less likely to feel cheated of a full life. They had a degree of anticipation and expectancy of death associated with the knowledge of having already accomplished things meant to be done over time. This group focused on their achievements such as getting married, having children, seeing their grandchildren grow up, being successful in business and providing for their family. For participants under the age of 71, facing premature death from terminal cancer held dierent meanings and their approaches to self-preservation diered. This group dwelt on `un®nished business' such as seeing their children marry and grandchildren grow up. Achieving in their professional life was also important. Participants sought opportunities to complete un®nished business and to minimise their losses as a result of not living a full life. Age, for this group, was a driving force to `®ght' the cancer illness by, for example, undertaking extensive treatment. Gender also aected the way that participants transacted self-preservation, mainly in relation to their role and responsibilities in the family and society and, in particular, in relation to the limitations imposed upon them from the progression of the cancer. Males were often frustrated by the restrictions incurred by the course of their cancer. Women questioned their responsibilities and made changes to them. Gender also in¯uenced participants' attitude to treatment. Female participants commonly feared rejection from partners because of a loss of sexuality, while males were more concerned with rejection from their own gender. Participants' experience/knowledge was either `inadequate' or `adequate' and the degree of accuracy varied. Experience/knowledge gained from exposure to cancer mostly painted a negative picture of the cancer experience, particularly in relation to death and dying, although these perceptions were usually not supported by their own experience. Participants gained experience/knowledge through seeing or hearing about the experiences of other people (usually friends and relatives) who had cancer. Some participants were exposed to cancer through their profession as health carers. In this case, they developed greater awareness of current methods of pain relief and visualised a clearer picture of death and dying as a peaceful rather than painful experience. Some participants based their understanding of cancer on media anecdotes. Others sought medical texts that gave information about their particular type of cancer. Several participants claimed to have raised questions with their doctors in order to be better informed of the consequences of cancer. In this case, participants' awareness of treatment and knowledge of its side-eects and of the progression of the cancer ill-
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ness increased. Nevertheless, desperation clouded rational thinking and statements about `being informed' were often ambiguous and re¯ected confused feelings. Participants' initial diagnoses of cancer and its progression also contributed to their experience/knowledge and in¯uenced their responses to further episodes. When participants thought they were well informed, for example, of treatment side eects, this added strength to their beliefs in a positive way and they were more inclined to go through the phases of transacting self-preservation more quickly and therefore, move more quickly toward a greater spiritual awareness. A sense of self-preservation also arose from participants' faith, expressed as self-faith, faith in others and/ or a faith in God or another Higher Being. They restored self-faith when friends, family and spouse were positive. These behaviours, as demonstrations of caring, were taken as indicators of the valuable contribution that participants made to their family and to society. Participants were united in their belief that developing a strong faith in their doctor, self, treatment, and/or God or another Higher Being was important. These sources of strength impacted positively on coping strategies and underpinned the richness and meaning that participants gave to their experiences. 10. Discussion When a person confronts a crisis, its impact often leads that person to seek reasons for the crisis and to give meaning to its intrusion in their life. This study has shown that the search for meaning in the terminal cancer experience arises from the person's need for self-preservation. Transacting self-preservation is made complete as the person reaches a deeper level of understanding of self that is imbued with spiritual growth embodied in a deeper sense of spiritual perspective, an enhanced sense of spiritual awareness and recognition and acceptance of the value of the spiritual experiences of others, God or another Higher Being. This deeper sense of spirituality incorporates more than a biopsychophysical awareness of the cancer illness and its outcomes. It gives deep meaning and richness to the person's life as they transcend their everyday experience in their journey to their inevitable and untimely death. In the process of this spiritual enrichment, the person with terminal cancer draws on the spiritual intactness 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 undertaken in institutions that endorsed a speci®c Christian philosophy. Participants were almost exclusively Christian, or held other religious beliefs. In contrast,
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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®ning 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 aliation. McSherry (1996) has argued that this view of spirituality excludes, for example, atheists, humanists, agnostics and many others. The ®ndings of this study support the view that, in the process of transacting self-preservation following a diagnosis of terminal cancer, a deeper 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 perspective' and provide support for other explanations of how people with terminal cancer make sense of the experience. 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 spiritualness develops and increases as transacting self-preservation 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 KuÈbler-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 proposal 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-preservation. 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 selfesteem and self-con®dence and that help the person realise 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 positiveness and a sense of hope. Nurses also need to be sensitive to their clients' understanding of their diagnosis and prognosis. They need to be prepared to provide accurate information about their clients' management and readily answer questions about their progress and they need to do so in a way that is sensitive to the ability of the person to make sense of that information. Even when the outcome is death, nurses can provide a positive context in which the client can prepare for their death and deal with issues that help them to conclude `un®nished business'. Nurses also need to understand their own spirituality in order to help their clients in their spiritual development. Above all, and as participants indicated, nurses should not be judgemental about the decisions that participants make. Rather, they need to be supportive and keep a positive attitude to their clients' health activities. In this context, clients' decision-making in relation to choices of cancer treatment and care needs support from nurses. Nurses can also help clients develop eective coping strategies and they can provide holistic care by involving the family in their loved one's spiritual care. Nurses can best do this by being aware of spiritual resources and their availability. Nurses' spiritual support may mean nothing more than taking the time to provide physical and psychological caring that touches the spirit. These activities might include providing basic hygiene needs, buttoning up a pyjama top correctly and calling the client by name. In the busyness of `saving lives', nurses need to reconsider the importance of these basic human needs to 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 dicult to articulate their spirituality. When this happens, nurses should remember that spirituality re¯ects the whole person and, therefore, they may need to help the person explore their attitudes, beliefs and values. To achieve this, nurses need to convey a sense of respect and sensitivity toward their patients' beliefs and attitudes and the meanings they attach to their experiences. Other health care professionals also need to pay more attention to the emotional consequences of cancer that impact on the person's spiritual well-being. 11. Conclusion There is no denying the importance of a spiritual dimension that gives meaning to the everyday experiences of people with terminal cancer. These people encounter an urgency to explore their sense of meaning in life, in the face of their impending death. As a
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