The skull beneath the skin: Cancer survival and awareness of death

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PSYCHO-ONCOLOGY Psycho-Oncology 13: 190–198 (2004) Published online 27 May 2003 in Wiley InterScience (www.interscience.wiley.com). DOI: 10.1002/pon.720 THE SKULL BENEATH THE SKIN: CANCER SURVIVAL AND AWARENESS OF DEATH MILES LITTLE* and EMMA-JANE SAYERS Centre for Values, Ethics and the Law in Medicine, University of Sydney, Australia SUMMARY Terror management theory predicts that people made aware of their own mortality (mortality salience) will seek to boost their self-esteem in order to buffer the anxiety they feel. One common resource to achieve this is strengthening social bonds with an admired in-group. It would also seem to predict that cancer survivors and those close to them would be driven to a greater closeness. A similar closeness might be predicted between those with terminal illness and their families and other supporters. Some empirical observations suggest that there are other forms of death-related salience which do not conform to the predictions of terror management theory. We suggest that some of those who have recovered from cancer may be made death salient, while those close to them remain mortality salient. Death salience seems to turn people inward to the resources and challenges of their deep (subconscious and unconscious) minds, and confronts them with the realities of their deep identities. A third form of salience, dying salience, affects those who have terminal illness. Distinguishing between death salience and mortality salience provides one explanation for the frequency with which close relationships break down after recovery from cancer. The distinctive nature of dying salience raises important questions about the inappropriate- ness of survivors as providers of support for the dying. Copyright # 2003 John Wiley & Sons, Ltd. INTRODUCTION Webster was much possessed by death And saw the skull beneath the skin; And breastless creatures underground Leaned backwards with a lipless grin. (Eliot, 1936) Terror management theory has gained a certain credibility in the last 10 years or so (Pyszczynski et al., 1990; Solomon et al., 1991; Arndt et al., 1998; Solomon et al., 2000; Goldenberg et al., 2001; Greenberg et al., 2001; Greenberg et al., 2001; McGregor et al., 2001; Silva 2001; Strachan et al., 2001). There has been heightened interest since the events of September 11, 2001 (Pyszczyns- ki et al., 2002), because terror management theory predicted so accurately the ways in which people in the United States would respond. Stated briefly, terror management theory as- sumes that the fear of death is innate and important (Becker, 1973; Ewin, 2002). If we are made aware of our own mortality by such things as the illness of a friend, terrorist attacks near home, or even by proximity to a funeral parlour (Greenberg et al., 1997), we are made ‘mortality salient’. Because of the depth of the innate fear of death, mortality salience provokes a deep sense of anxiety. We become aware that we too are finite beings, whose lives and deaths may seem to have no meaning. Our self-esteem is the strongest anxiety buffer that we have, and self-esteem depends to a considerable extent on social relatedness. Our sense of our own autonomy, competence and capacity to relate to others depends, therefore, to a significant extent on our capacity to create and maintain membership of an admired social group. Terror management theory predicts that mortality salience will make us turn for reassurance to the values of our in-groups. In other words, we seek reassurance that our values will live on in the values of the in-group, even though we recognise the transience of our own lives. The theory thus predicts, for example, a great Copyright # 2003 John Wiley & Sons, Ltd. Received 26 September 2002 Accepted 20 January 2003 *Correspondence to: Centre for Values, Ethics and the Law in Medicine, Building D06, University of Sydney, Sydney 2006 NSW, Australia. E-mail: [email protected]

Transcript of The skull beneath the skin: Cancer survival and awareness of death

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PSYCHO-ONCOLOGY

Psycho-Oncology 13: 190–198 (2004)Published online 27 May 2003 in Wiley InterScience (www.interscience.wiley.com). DOI: 10.1002/pon.720

THE SKULL BENEATH THE SKIN: CANCERSURVIVAL AND AWARENESS OF DEATH

MILES LITTLE* and EMMA-JANE SAYERS

Centre for Values, Ethics and the Law in Medicine, University of Sydney, Australia

SUMMARY

Terror management theory predicts that people made aware of their own mortality (mortality salience) will seek toboost their self-esteem in order to buffer the anxiety they feel. One common resource to achieve this is strengtheningsocial bonds with an admired in-group. It would also seem to predict that cancer survivors and those close to themwould be driven to a greater closeness. A similar closeness might be predicted between those with terminal illness andtheir families and other supporters. Some empirical observations suggest that there are other forms of death-relatedsalience which do not conform to the predictions of terror management theory.We suggest that some of those who have recovered from cancer may be made death salient, while those close to

them remain mortality salient. Death salience seems to turn people inward to the resources and challenges of theirdeep (subconscious and unconscious) minds, and confronts them with the realities of their deep identities. A thirdform of salience, dying salience, affects those who have terminal illness. Distinguishing between death salience andmortality salience provides one explanation for the frequency with which close relationships break down afterrecovery from cancer. The distinctive nature of dying salience raises important questions about the inappropriate-ness of survivors as providers of support for the dying. Copyright # 2003 John Wiley & Sons, Ltd.

INTRODUCTION

Webster was much possessed by deathAnd saw the skull beneath the skin;And breastless creatures undergroundLeaned backwards with a lipless grin.

(Eliot, 1936)

Terror management theory has gained a certaincredibility in the last 10 years or so (Pyszczynskiet al., 1990; Solomon et al., 1991; Arndt et al.,1998; Solomon et al., 2000; Goldenberg et al.,2001; Greenberg et al., 2001; Greenberg et al.,2001; McGregor et al., 2001; Silva 2001; Strachanet al., 2001). There has been heightened interestsince the events of September 11, 2001 (Pyszczyns-ki et al., 2002), because terror management theorypredicted so accurately the ways in which people inthe United States would respond.

Stated briefly, terror management theory as-sumes that the fear of death is innate andimportant (Becker, 1973; Ewin, 2002). If we aremade aware of our own mortality by such thingsas the illness of a friend, terrorist attacks nearhome, or even by proximity to a funeral parlour(Greenberg et al., 1997), we are made ‘mortalitysalient’. Because of the depth of the innate fear ofdeath, mortality salience provokes a deep sense ofanxiety. We become aware that we too are finitebeings, whose lives and deaths may seem to haveno meaning. Our self-esteem is the strongestanxiety buffer that we have, and self-esteemdepends to a considerable extent on socialrelatedness. Our sense of our own autonomy,competence and capacity to relate to othersdepends, therefore, to a significant extent on ourcapacity to create and maintain membership of anadmired social group. Terror management theorypredicts that mortality salience will make us turnfor reassurance to the values of our in-groups. Inother words, we seek reassurance that our valueswill live on in the values of the in-group, eventhough we recognise the transience of our ownlives. The theory thus predicts, for example, a great

Copyright # 2003 John Wiley & Sons, Ltd. Received 26 September 2002Accepted 20 January 2003

*Correspondence to: Centre for Values, Ethics and the Law inMedicine, Building D06, University of Sydney, Sydney 2006NSW, Australia. E-mail: [email protected]

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outburst of American patriotism as a responseto September 11th, 2001 as people in theUnited States sought reassurance in each othersvalues.

If terror management theory is correct, it shouldhave a considerable amount to contribute towardthe understanding of what happens to the lives andrelationships of those who survive cancer. It wouldseem to predict that surviving cancer would inducemortality salience in the survivors themselves andthose close to them. Faced with mortality saliencein this way, it would also predict stronger bondingbetween cancer survivors and the social groups towhich they belong, and strong bonding betweencancer survivors themselves. Increased groupsolidarity between cancer survivors is familiarenough, and the success of cancer support groupstestifies to the value of newly created in-groups forsurvivors.

Empirical observations, however, do not sup-port the idea that increased strength in closerelationships necessarily develops between cancersurvivors and those who were close to them beforethe cancer occurred. Just under half of cancersurvivors in North American surveys reportstrengthened family relationships, while between20 and 30% report a deterioration in closerelationships (Smith and Lesko 1988; Ell et al.,1989; Schultz et al., 2002). Similarly, there aretensions within cancer support groups that needexamination. People who become voluntary coun-sellors soon after finishing their own cancertreatment may in time lose their sense of solidaritywith those newly diagnosed. Furthermore, longerterm survivors find requests to talk to those withterminal illness may be profoundly disquieting.These changes and tensions would not be pre-dicted by terror management theory if mortalitysalience remains constant, and is a single responseevoked by any reminder of mortality.

This paper reports a piece of qualitativeresearch. It is therefore based on close narrativeanalysis of a relatively small number of cases. Weattempt to define some categories of experience,which may be of use to clinicians, and toresearchers who wish to use quantitative methods.The paper is a ‘think-piece’, not a definitiveepidemiological study.

We introduce concepts of death salience anddying salience in addition to mortality salience.Death salience is an awareness of the inevitability,reality and finality of personal death and itsnothingness, rather than of mortality as the shared

eventual fate of humankind. Dying salience is thedying person’s awareness of the imminence ofpersonal death, and of the move away from theimmediacy and experience of living in the world. Itis a betwixt-and-between, liminal state of increas-ing separation from the world.

SOURCES OF DATA

We have derived the data for this paper from threesources:

1. Extended narrative interviews with 15 survivorsof large bowel, liver and breast cancer, Hodg-kin’s lymphoma and leukaemia. The methodol-ogy of these interviews and their analysis hasbeen published elsewhere (Little et al., 1998;Little et al., 1999; Little et al., 2000; Little et al.,2000; Jordens et al., 2001; Little et al., 2001;Little et al., 2002).

2. Similar interviews with three people who werepartners and carers of cancer survivors.

3. Published accounts of survival of bone marrowtransplantation for leukaemia (Miles, 1995,1997, 2000; Handler, 1996).

We have read this material for instances ofawareness of death. In doing so, we have usedGrounded Theory (Strauss, 1987; Strauss andCorbin, 1990), and methods of narrative analysis,both familiar (Kleinman, 1981, 1988; Hawkins,1993; Mishler, 1995, 1996; Mattingly, 1998) andnovel (Jordens et al., 2001).

We have also examined the records of 50 people,treated by one of the authors (ML) and apparentlycured of abdominal cancers for evidence of thekinds of distress we have reported elsewhere. Postcancer distress requiring specific support waspresent in 16 of the 50 (32%, 95% confidenceintervals 21–45%). We certainly do not believethat the problems we report in this paper affect allsurvivors.

THREE KINDS OF SALIENCE

We believe that the awareness of death takes threeforms during and after cancer illness, and that theform is broadly determined by the time since

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diagnosis and treatment, and by the stage of thecancer. Briefly, we distinguish the followingsaliencies:

1. Mortality salience during and immediately afterdiagnosis and treatment;

2. Death salience which evolves after a variabletime in some, but perhaps not all, survivors ofcancer who are apparently free of disease;

3. Dying salience which affects those with terminaldisease.

Mortality salience, diagnosis and treatment

A cancer diagnosis evokes fear and protectiveresponses in both the victim and those close to her.In Western communities at least, the acceptedresponse is to adopt the ‘fighting’ metaphor(Sontag, 1991). Cancer is to be resisted, joined inbattle. Because Western (and many other) societiesfear cancer so much, everyone affected by thediagnosis is made mortality salient. The responseof Helen, a 40 year old woman told that she haslarge bowel cancer, is typical:

I suppose when I heard about it I thought}youthink of cancer, death}I mean you just think ofdying}you don’t think of the people that recover.

The same kind of deep fear is evoked in those closeto the cancer patient. The patient and those closeto her unite to fight the cancer. Families, inparticular, tend to come together, and to ‘thinkpositive’, to generate a discourse of recovery, ofvictory over the cancer. The writer SamanthaMiles recalls the closeness brought about by herleukaemia (Miles, 1997):

When you were sick, there was a purpose in life. Toget better. Everyone agreed that was the mostimportant thing. To get better, so you could to outand rule the world. Or run a florist shop. Whatevertook your fancy.To get better you took yellow tablets on Monday andgreen ones on Thursday. You saw the doctor everyweek and your latest blood test results were handedaround the dinner table. People told you that theyloved you. Just for being alive.

This is what terror management theory wouldpredict. Mortality salience should turn thoseaffected to their valued groups, to seek solidarityand assurance that their values are endorsed andwill be carried on, whatever the fate of each

individual member of the group. A bondingtherefore develops between friends, family mem-bers, partners and lovers, who may feel closer toone another than ever before. We are culturallyattuned to helping one another in times of illness.We condone helplessness, demands, complaintsand appeals for special consideration.

We can liken mortality salience to examining amap of the terrain of the end of life. We are able tosee roughly what the ground is like, and to imaginewhat it would be like to be there. But we are notactually there, and the need to be there isindefinitely deferred.

It may seem odd that we include both patientsand those close to them within one category at thisstage of the cancer process. We believe that thepower of the social response to mortality saliencecarries the patient, as well as those around her.Survivors often insist that they never thought thatthey would die. Here, for example, is Jan talkingabout her chemotherapy for liver cancer at age 13:

I always thought it would work. Always. It neverentered my mind that it wouldn’t work, and I thinkthat’s probably due to my mum, she would never letme think that you know.

Jan expresses well the sense in which solidaritywithin a family group is created by a denial ofdeath, and by the determination that, as a group,the members will ‘beat cancer’.

Some cancer survivors believe that they will die,but we are impressed by the frequency with whichthey tell us of their belief that they would live. Jan,for example, says explicitly that she did not thinkthat she would die, but then adds that ‘There weretimes when I wanted to die’ because of theawfulness of chemotherapy.

Mortality salience seems to persist for thefamilies of survivors, almost indefinitely. Familymembers, partners and lovers are reminded ofmortality by the mere presence of the survivor.May cares for her husband, who had bowel cancertwo years ago. He has a colostomy, and hasrestricted his social activities considerably. Mayfinds the reminders of mortality and limitation aretroubling:

And ah, you know, it’s something that I wish that hewould get over, but I don’t think that he is going toget over.

We believe that mortality salience for survivorscontinues for some time after treatment has

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finished, well into the phase of disease-freesurvival. The same positive approach persists.Survivors in this early phase often join supportgroups, and offer their services as counsellors oradvisers to those who have been recently diag-nosed. Eva became a counsellor for a supportgroup which serves young people with cancer. Shedescribes the experience of becoming a publicspeaker on cancer-related matters:

. . .then probably once I had done it a few times Ithought this feels really good! I, I enjoy this, thisgives me a good feeling, it does something positivefor me so I am going to keep doing it. So I thinkyeah, yeah I think that is probably more where Istarted to, to feel like this this helps me. . .I feel thatthis is helping me deal with what has happened, and,and turn it into, you know, something good, some-thing positive, I get a, you know, genuinely an almostphysical good feeling about, about it once I havecompleted, you know a talk, and I am chattingamongst whoever the audience might be. . .

Death salience

Eva’s good feeling about her ability to speakpublicly of her cancer experience, however, doesnot last indefinitely. Characteristically, at abouttwo years after treatment finished, she notes thatthe good feeling

has already changed in that I don’t, I don’t feel that Iwant to, or that I am particularly able to be thatperson or be that patient any more that stands upand virtually in a sense speaks for patients in a way,and says you know ‘This is what treatment’s like, ordiagnosis is like and go through all that, that history,I don’t really want, I am not particularly interested indoing that any more and I am not, I am not there, Iam not with the, I am detached from that, so I ammerely, I can talk about it, but, it doesn’t it, I don’tfeel connected with that experience, or feel like I haveto kind of recall it from the memory, and I am also indanger of just rehashing some old stories that I havetold a million times before, instead of you knowgenuinely telling it in the moment, type thing.

Eva reports a common experience. Danny, anactor surviving bowel cancer; Anne, a nursesurviving both breast and bowel cancer; Sa-mantha, an author surviving leukaemia and bonemarrow transplantation–all these people andmany others report a ‘honeymoon phase’, lastingabout two years after treatment, and then a phaseof anti-climax. In this anti-climactic phase, about

30% of survivors question the meaning of theirlives, their achievements, their real identities. Theymanifest what we call ‘post-cancer distress’. It is atroubled phase, and its language is often chaotic(Frank, 1995) and ‘hard-working’ (Jordens et al.,2001) as narrators strive to reconstruct theiridentities and the meaning of their lives. It ispossible, for example, to detect the sense ofdisorder in the words of Eva, just quoted, andthe effort she expends to make meaning of herexperiences.

We believe that some survivors become deathsalient}that is, they realise that the illness fromwhich they have recovered could have led to theirannihilation, to the end of their meaning. Incontrast to mortality salience, which we liken toreading a map, death salience can be compared tohaving once been on the ground covered by themap. Treatment of cancer often evokes a form oftemporary dying salience, about which we will saymore shortly. To have been diagnosed and treatedfor cancer is to have experienced the mountainsand valleys of the terrain of dying, to have felt theextremes of temperature and discomfort, and tohave glimpsed the personal death-cairn whichmarks the end of everything knowable andmaterial.

Jan gives us an indication of what it means tobecome death salient. Having told us that shealways believed that her chemotherapy wouldwork during her treatment, she has a conversationwith her oncologist which unsettles her:

I asked Prof K– ‘What would have happened, youknow, how long would I have had if the chemohadn’t done anything’, and he said, ‘Well weprobably would have given you two months’. And Ikind of just, well I didn’t really know that it was thatserious, kind of, you know, and I don’t know lookingback whether that would have been a good thing totell a thirteen year old.

Death salience causes us to question meaning inour lives, and to turn inward, rather than turningoutward to valued groups for endorsement. Ittakes some time for death salience to develop, longenough to realise that the bonding experience ofthe illness and its treatment might not have led tofreedom from cancer, but might just as easily haveled to death. Danny, the actor, recalls the first yearand a half after his treatment finished:

And then in the beginning and the, so it was about ayear, you know in that year, I started, but then when

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I was really determined to you know, you know be,because I felt you know, I felt ah really blessed youknow that I had been you know, got the all clear andthat you know that this isn’t going to happen againand, and I distinctly remember there, not distinctly(laugh) from ‘96, from when it happened in October‘96 up until about um the first couple of months into‘98 I was, things were just powering along, thingswere just going great. . .

Then things change. Danny recalls how hesuddenly has

A glimpse at death sort of thing. . .And ah, I shouldbe lucky that I am alive, you know, and, and that,and that, not have to, because I suppose in thinkingabout sort of life and death terms I thought it wasalways sort of, uhm, you know flirting with deathand thinking you know that, um, you knowquestioning death, and you know sort of investigat-ing death in that sort of artistic way, but alsoemotional way and what it means and stuff, buthaving this made me think that I would never youknow, um, not that I am talking about suicide oranything like that. . .It is just that sort, that sort of,um, ‘What is the point?’

Danny’s creative impulse runs out as he questionsthe meaning of his life and its achievements. Thiskind of realisation is painful to confront anddifficult to assimilate. It is not surprising thatsurvivors troubled by what we call ‘post-cancerdistress’ have to struggle so hard both to recon-struct their lives and to express their experience.

A simple mind map

For this discussion, we like to model the mind ina very simple way, much as Michael Kearney doesin his work on healing, suffering and dying(Kearney, 2000). We consider it to consist of anavailable mind and a deep mind. The availablemind is the one of which we are conscious day byday. This is where cognition goes on and whereawareness is situated, including awareness of theself. It is the site of the social constructs that weuse in the interactions of our daily lives. The deepmind contains the unconscious and the subcon-scious. Here are innate characteristics and intuitivevalues, including such primitive fears as our fear ofdeath. Into the deep mind go the internalisedvalues that we absorb from the society in which wedevelop and from the important people in ourlives.

We think that it is possible to model personalidentity using this simple model of the mind. It ismade up of social identity and deep identity. Socialidentity is the identity we construct for ourselves insocial interaction. We are conscious of our socialidentity from context to context. Social identity isconstructed and reconstructed reflexively as wedeal with individuals and groups in our dailyactivities. It is constructed in and by the availablemind, and we can examine and appraise itaccording to cognitive, aesthetic and moral stan-dards. It is social identity we protect and insurewhen we turn to valued groups for endorsement inconditions of mortality salience.

Deep identity, on the other hand, resides in thedeep mind. It is unavailable to most people mostof the time. In conditions of death salience,however, it may become salient itself. We can saythat normally there exists an opaque barrierbetween the available mind and its containedsocial identity and the deep mind with its deepidentity. Extreme experience and death salienceforce the opaque barrier open, so that the deathsalient person may be confronted with deepvalues and fears that have been hidden until theextreme experience. Questions about causation,meaning, justice, the purpose of a life andthe reasons to continue living may well up fromthe deep mind and the deep identity into theavailable mind. Death salience implies a turnin the opposite direction to the turn of mortalitysalience.

Dying salience

We do not propose to discuss dying salience inany detail. There has been much written aboutdying in the last 40 years (Feifel, 1965; Sudnow,1967; K .uubler-Ross, 1969; Grof and Halifax, 1977;Elias, 1985; Ari"ees, 1991; Broyard, 1992; Callananand Kelley, 1997; Nuland, 1997; Exley andLetherby, 2001). To be dying is to be actuallytravelling on the ground, a journey whose destina-tion is the death-cairn and beyond. It is a time ofgreat loneliness for many. Exley and Letherby, forexample, quote an interview with Ann, who has aterminal illness:

I can quite happily sit there and chat and laugh andtell her [an acquaintance at the hospital] all aboutmyself, and listen to her tell me all about herself, andit doesn’t bother me. But when it comes to somebody

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who I’m really close to, who I really love, or who Iknow loves me, I can’t do it. I can talk to you, ‘cos Idon’t know you, you’re outside the family, but I justcan’t talk to the family.

Communicating the experience and its implica-tions is almost impossible. Exley and Letherbyalso quote Anna, terminally ill, speaking oftrying to write something for her family abouther dying:

. . .I don’t know what I can say. I want to do it,because they want it, but I can’t put it down, I can’tbring it out of my mouth what I want to say, I mean Ilove them and that’s it really, and I didn’t want toleave them. . .What are you supposed to talk about?

Convention and deep fears block communicationat a time when it is needed by both those who aredying and those who watch the process.

EFFECTS OF SURVIVING A CANCERILLNESS

Close relationships

Cancer illness may thus prove divisive, ratherthan acting as a bonding stimulus. The person whohas had cancer, after having gone through a formof dying salience, modified by hope, during thephase of illness, may become death salient. This inturn may disrupt the barrier between the socialand deep identity. At the same time, we havedemonstrated elsewhere how the social identity ofthe cancer survivor may be profoundly disrupted(Little et al., 2001, pp. 94–105; Little et al., 2002).Cancer impairs personal autonomy, frequentlyreduces competencies, cuts across the sense ofcontinuity on which identity depends, altersrelationships between the self and its containingbody, and threatens the meaning of the imaginedfuture. A 72 year old man, successfully treated forcolon cancer 6 years ago, says of his life with acolostomy:

But uh I ‘m just now tinged with regret for what I’vehad to put up with, and there is just nothing on thehorizon. There is nowhere I can turn for the future,okay?

These are profound disturbances, and it is hardlysurprising that cancer survivors re-evaluate closerelationships for meaning and understanding. The

radical change in social identity prompts personalre-evaluation and reconstruction. Values change,and survivors become aware of things that theytook for granted. Helen, a forty year old survivorof bowel cancer says

I mean if I wake up alive, that’s what’s important tome now.

Identity reconstruction involves difficult work onthe self which may take many years, and may beexpressed in ‘hard-working’ narratives of personalexperience (Jordens et al., 2001). It is hardlysurprising that many cancer survivors report longterm fatigue, for which there may be no obviousphysical explanation.

The effects of extreme experience are notconfined to the person undergoing the experience.His or her close connections cannot help seeingtheir own potential mortality in the experience oftheir partner, lover, family member or friend.Cancer experience in one person therefore gen-erates mortality salience in others. As terrormanagement theory tells us, mortality saliencechallenges social identity and self esteem (Solomonet al., 1991). It prompts an anxiety bufferingresponse which involves turning more strongly tothe valued social ‘in-group’. The social bondingwith others who share similar values may wellinvolve turning away from the source of anxiety,the person who has recovered from cancer. Thus,the mortality salient person seeks a restoration ofself esteem by looking for a social endorsementthat may take them well away from the personwho wants their continuing support against thedisruptions of cancer survival.

This in turn invites a counter-judgement fromthe cancer survivor. When he or she sought help, itseems that the partner, lover, or friend has turnedaway, deserting the survivor for a group that insome way denies the validity of the survivorexperience. Each therefore judges the otherharshly. The close connection looks at thesurvivor, and sees a threat to their own self esteemand sense of well being, and makes a judgementthat the survivor has failed to return to normal, oreven to something greater than normal since theyhave been privileged enough to have conqueredcancer. The survivor looks at the partner or friend,and judges that he or she has failed to understandand to provide the necessary support. Thesemutual judgements result in a self-perpetuatingrift that may take each person further and furtherfrom the other.

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Saliencies and support roles

It seems clear that saliencies differ between thosein (and just beyond) treatment and their carers,those who have progressed beyond the honey-moon phase after treatment, and those who aredying. The first experience mortality salience, andare bonded by their determination to rejectmortality. Longer term survivors experience deathsalience, and are likely to seek answers, reassur-ances and meanings within their own deepidentities. The terminally ill experience dyingsalience, and are journeying down the path thatwe fear most profoundly. There is evidence thatcommunication between these three groups isdifficult. Because the adaptive and coping strate-gies involved are so different, it could be quitecounter-productive to expect death salient survi-vors to provide support for mortality salientpeople in or soon after treatment. More impor-tantly, it may be deeply distressing to ask survivorsto support those who are dying. Those who aredying are likely to perceive survivors as privileged,as people with a future, while survivors areconfronted with the irrationality of their owngood fortune. Evan Handler, an actor whosurvived leukaemia and bone marrow transplanta-tion, writes (Handler 1996, pp. 274–275):

I’ve heard about the concept of ‘survivor’s guilt’, andI’ve always kept alert for the pangs of it. I’vedefinitely felt embarrassed in the presence of anobviously doomed companion, and I felt like hidingfrom the parents of deceased friends or acquaintan-ces...But mostly I walk away from such encountersfeeling lucky. Shaken; frightened for my own futurein this treacherous world; and glad it wasn’t me. Iclassify myself as one of the very luckiest of theunluckiest people to have ever lived.

On both sides, the challenge to personal identityand fragile meaning may be too much to ask.Being death salient does not, of course, mean thatone accepts death. Salience implies awareness, andone coping mechanism may involve rejecting deathand its implications. Here, for example, is EvanHandler writing about an encounter with Lisa, afriend with advanced malignancy (Handler 1996,p. 274):

.. I felt as lost and inept as I’d found my visitors yearsbefore. I had no idea how to face my friend who wasso stoically facing her own death. The fact is, I neverconfronted death as anything more than a terrifyingspecter that I always managed to push away. If

anything, my experiences have left me with an evenstronger denial of death than ever before. I know thefear of it well. But as for acceptance, I never gotclose.

Handler’s means of coping with his death salienceis thus put at risk by this encounter, and it isunlikely that his friend was helped. The saliencydifferences need to be respected.

THERAPEUTIC IMPLICATIONS

These observations have at least two sets ofimplications for therapists}implications for closerelationships, and implications for the structureand function of support groups

Understanding the potential divisiveness of thedifference between death salience and mortalitysalience may be one way to begin approachingsome relationship problems. We have noted thatthose who have successfully preserved or evenstrengthened pre-existing relationships have devel-oped ways of communicating that use a non-judgmental discourse. They do not use judgmentalterms}‘failure’, ‘weakness’, ‘abnormality’}employ-ing instead metaphors and ways of speaking thatreconstrue loss as change that requires accommo-dation on everyone’s part. One woman in herthirties, for example, confronted by her partner’sdebility and radical change of values, says on theAustralian Broadcasting Commission’s Four Cor-ners television program, Surviving Survival:

That part of our life has gone, it’s changed. And thisis. . .we have to look at it as something new, and wehave to look at it in a positive way. . .And, sort of, Iknow now that the best way to support him is formyself to be open to a new start as well.

The ability to maintain or reconstruct relation-ships under circumstances where mortality salienceand death salience may bring conflict will dependvery much on people’s motivation. The potentialconflict may explain why previously troubledrelationships so often break down. They areseldom ‘saved’ by the extreme experience of oneor other party. Most ‘normal’ relationships havetheir ups and downs, but survive. Terror manage-ment theory might, on the face of it, predict astrengthening of relationships if there are stillshared values between people made mortalitysalient by the cancer illness of one. The fact that

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relationships often break down is more easilyexplained by recognising the difference betweenmortality salience and death salience. It is sad thatan extreme event may act as a potential wedge todrive a relationship apart at a time when mutualsupport is most needed.

There are also implications for the ways inwhich cancer support groups function. Supportgroups commonly depend on volunteers to pro-vide counselling and support for those newlydiagnosed and in treatment. It is important toremember that the impetus to provide this supportmay change with time, and that the commitmentto telling and hearing the illness story maydiminish. It is even more important to bear inmind the mutual difficulties inherent in askingsurvivors to counsel and support those who aredying. The discomfort that both parties mayexperience can impose unreasonable burdens onthose who need support and those who volunteerto provide it.

These observations do not in any way invalidateterror management theory. They may, however,go some way toward extending its scope andexplanatory power.

ACKNOWLEDGEMENTS

This work was supported by grants from the Thyne ReidTrust No. 1 (Education), Mrs Caroline Simpson andMrs Clare Sayers.

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