Vol. 37 No.

1 January 2009 Journal of Pain and Symptom Management 13

Original Article

Coping Strategies in the Presence of One’s

Own Impending Death from Cancer
Lisa Sand, MSW, PhD (C), Mariann Olsson, MSW, PhD, and Peter Strang, MD, PhD
Unit for Palliative Medicine and Advanced Medical Home Care (L.S.), ASIH Långbro Park;
and Departments of Neurobiology, Caring Sciences and Society (M.O.) and Oncology and Pathology
(L.S., P.S.), Karolinska Institute, Stockholm, Sweden

Abstract
An incurable cancer is a threat to life itself. This study focused on how native-born Swedes,
who define themselves as nonreligious, actually reflect and act when they try to create helpful
strategies in the presence of their own impending deaths and how the strategies serve their
purposes. Twenty patients were interviewed in depth. The patients were enrolled in an
advanced hospital-based home care team. The interviews were taped, transcribed and analyzed
with a qualitative, hermeneutic interpretative method. The informants’ efforts to develop
useful strategies to restrain death could be symbolized as a cognitive and emotional pendulum,
swinging between the extremes of life and death. During the swings of the pendulum, the
informants used every means available: their own resources, other people, animals, nature,
a transcendent power, hope, imagination and magical thinking. They strove to find factors
that fitted their conceptual system and supported their inner balance and structure, all to keep
death at a discreet distance and preserve their links to life. These links were togetherness,
involvement, hope and continuance, and they served as a shield against hurtful feelings
connected to their impending death. The new knowledge about how strategies in the presence of
one’s own impending death can develop and be used is perhaps the most novel and clinically
relevant contribution of this study. J Pain Symptom Manage 2009;37:13e22. Ó 2009
U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Key Words
Existential, death, coping, palliative, home care, cancer, hermeneutics

Introduction been a profound concern to human beings

An incurable cancer is a threat to a person’s
life and the awareness of the diagnosis exposes
the frailness of existence. Death has always
The authors thank the Swedish Cancer Society, The
Cancer & Traffic Injury Fund (CTRF) and the Stock-
holm County Council for financial support.
Address correspondence to: Lisa Sand, MSW, PhD
(C), ASIH Långbro Park, Unit for Palliative Medi-
cine and Advanced Medical Home Care, Stock-
holms Sjukhem FoUU, Mariebergsgatan 22, SE-112
35 Stockholm, Sweden. E-mail: lisa.sand@ki.se
Accepted for publication: January 25, 2008.
and many great thinkers in Western countries,
for example, Martin Heidegger,1 Paul Tillich,2
and Ernest Becker,3 as well as psychotherapists
such as Irvin Yalom4 and Rollo May,5 have writ-
ten about how the awareness of death influ-
ences human existence. Most palliative care
studies, however, have had their focus on the
trajectory of dying and symptom control in
a broad sense, that is, on the physical and
psychosocial aspects, but not on existential
challenges.
To be confronted with one’s own mortality is
a demanding situation that triggers emotional

Ó 2009 U.S. Cancer Pain Relief Committee 0885-3924/09/$esee front matter

Published by Elsevier Inc. All rights reserved. doi:10.1016/j.jpainsymman.2008.01.013
14
distress and death anxiety,3,4,6,7 and requires
an extraordinary psychological mobilization.
In such situations, people develop different
kinds of coping strategies. A lot of research
that has been done with a focus on coping
over the last decades, since the first studies by
Avery Weisman,8 can be traced back to the
work of Richard Lazarus.9 Lazarus extended
the significance of coping, which had previously
been focused on defense and had an emphasis
on pathology, to include a wide range of cogni-
tive and behavioral responses that ordinary peo-
ple use to handle distress in their daily lives.
About 20 years later, Lazarus and Susan Folk-
man10 presented their stress-appraisal-coping
model. In that work, the authors stressed the sig-
nificance of how a demand is appraised and that
the coping process is initiated only if important
values are harmed, lost, or threatened.
Later, the significance of meaning-making as
part of the coping process was elucidated11e13
and the significance of positive effect in the
midst of distress was observed.14,15 Today, we
know that coping is a multidimensional pro-
cess that is sensitive both to the environment
and to personality dispositions.16 Significant
dispositions in the coping process are pre-
sented in, for example, Rotter’s theory of locus
of control,17 Kobasa’s theory of hardiness,18
Janoff-Bulman’s assumptive worlds,19 the the-
ory of learned optimism,20 cognitive adapta-
tion,21 and the concept of resilience.22
In spite of over 30 years of extensive coping
research on curable cancer and living with
a disseminated disease, coping in the context
of one’s own impending death has not been
greatly elucidated. Probably there is a crucial
difference between coping with a disseminated
disease and focusing on living for as long as
possible, and coping with one’s impending
death in a situation when one realizes that
life soon will come to an end. Hope23e25 and
meaning12,26e28 have been identified as funda-
mental parts of useful strategies. However,
not many studies have probed a deeper under-
standing of what people actually do when they
form strategies, and what it is that makes their
strategies useful in the context of facing their
own impending death.
Pär Salander’s research on patients with ma-
lignant brain tumors29,30 demonstrates that
such strategies may originate from different
sources. One’s own body as an essential element
Sand et al. Vol. 37 No. 1 January 2009
for gathering hope is emphasized; helpful rela-
tionships are pointed out as important, as well as
the creation of different cognitive maneuvers
and the handling of information.
Today, Sweden is a multicultural society. The
significance of religion varies according to the
individual, but religious involvement is gener-
ally low, which differs significantly from the
situation in the Uinited States.31 Many native-
born Swedes are secularized, and even if 75%
of the inhabitants still belong to the Swedish
Lutheran Church,32 they are not necessarily
active Christians.33 As indicated both by the
European Values Study34 and some of the
SOM Institute reports,35,36 people in Sweden
still tend to believe in some kind of spiritual
power or life force.
The aim of the present study was to obtain
knowledge about how native-born Swedes,
who define themselves as nonreligious, de-
velop coping strategies in the presence of their
own impending death. The aim was also to
gain an understanding of how these strategies
serve their purpose and help the informants
cope with distress provoked by the fact that
they will soon be no more.
Materials and Methods
Setting
The study was conducted in a Swedish ad-
vanced palliative home care program in the
greater Stockholm area. The unit has an orga-
nization similar to the Motala model, with a
multiprofessional home care team, including
a physician, 24-hour services, and access to a
back-up ward.37
Patients
The study comprised 20 patients, all with
a cancer diagnosis, in an early or a late pallia-
tive phase of their cancer. They were all Swedes
and defined themselves as nonreligious. They
were secularized and not religiously involved
but had an openness to discuss existential
issues. Data were collected with maximum var-
iation sampling aimed at capturing and de-
scribing central themes that cut across
variations.38 It was considered important that
variation was based on gender, age, family
situation, occupation, diagnosis, total time of
illness, and the phase of the illness. The charac-
teristics of the patients are presented in Table 1.
Vol. 37 No. 1 January 2009 Coping Strategies When Facing Death 15

Table 1 were senior researchers with long experience

Patient Characteristics in qualitative methods. All the authors have
Demographic Data n long clinical experience in cancer care as
Total number of patients 20 palliative care specialists.
Sex (male/female) 8/12
The data were analyzed using existential her-
meneutics. When choosing this approach to ana-
Age (years)
20e49 2 lyze a text, the aim is to obtain a deeper
50e69 11 understanding of the meaning and implicit is-
70e89 6 sues that are expressed and sometimes hidden
$90 1
in the text.39e41 In this study, the interviews con-
Primary malignancy
Urological 4
stitute the text and the goal for this analysis was to
Gastrointestinal 3 capture what receiving a palliative cancer diag-
Hematological 3 nosis had meant for the informants and what
Lung 3
Breast 3
strategies they used to cope with their situation.
Brain 2 Hermeneutics is a method that allows interpre-
Gynecological 2 tation, which seemed important here because
Time from interview to death (months) the interviews concerned questions about dying
0e3 11 and death. Such topics are often difficult to
4e6 3
7e9 4 discuss because they may create fear or elicit
$10 2 a defense mechanism. Consequently, there are
good reasons to assume that the informant
would not give explicit expressions.2,4,6
Data Collection
The hermeneutic inquiry has no formally
A semi-structured interview guide (Appendix)
described method. There is no ‘‘hands-on’’ or
was constructed by two of the authors, discussed
‘‘step-by-step’’ manual for interpretation, but
with colleagues in the multiprofessional pallia-
there are principles, originally described by Rad-
tive home care team, and tested on two patients.
nitzky42 and later on adapted and extended by
To encourage participants’ spontaneous ac-
Kvale,39 which have been used here. These prin-
counts, open-ended questions were used. The
ciples are 1) continuous back-and-forth process
interview guide was seen as an aid for the inter-
between the parts and the whole; 2) interpreta-
viewer,38 as a structure to keep to but with full
tion ends when a ‘‘good gestalt’’ is reached, an
freedom to use follow-up questions to explore,
inner unity of the text, free from logical contra-
deepen and validate the answer.39
dictions; 3) testing the partial interpretations
The informants were approached with both
against the global meaning of the text; 4) auton-
written and verbal information, in good agree-
omy of the text, that is, the text should also be
ment with the ethical standards as stated by the
understood on the basis of its own frame of refer-
regional ethics committee. Informed consent
ence; 5) hermeneutical explication of a text
was obtained in every case and the patients
concerns knowledge about the theme of the
were notified that they could withdraw from
text; 6) an interpretation of a text is not pre-
the study whenever they wanted to and that
suppositionless; and 7) every interpretation in-
anonymity was guaranteed.
volves innovation and creativity. The detailed
The venue for the interviews was the choice of
process of analysis is described elsewhere.43 The
the informants and took place either in their own
results will be presented both in the form of
homes or in the ward that was a part of the palli-
parts (categories) and as ‘‘a whole,’’ where the
ative program. The interviews were conducted by
whole represents a synthesis of the categories.
the first author and lasted between 45 and 105
The interpretation was inspired by the exis-
minutes. They were tape recorded and tran-
tential psychological theory, according to
scribed verbatim. The Ethical Committee at Kar-
Yalom.4 The process of comparing parts with
olinska University Hospital approved the study.
the whole was repeated several times, accord-
ing to the hermeneutic spiral.42,44 In the pro-
Theoretical Framework and Analysis cess, alternative interpretations of the parts
The data were analyzed by the three authors. in an interview were tested and compared, by
One of the social workers and the consultant means of juxtapositioning.45 The analysis was
16 Sand et al.
concluded when the interpretation seemed
coherent without any logical contradictions.
To further explore how the informants’ strate-
gies were formed, the interviews were also tested
in a model of meaning-focused coping devel-
oped by Crystal Park and Susan Folkman.12 The
model highlights the central role of reappraisal
and the importance of achieving congruence
between an individual’s global meaning and
the appraised meaning of a particular event.
Trustworthiness
During the interviews, a dialogical validation
was performed.44 Similar questions were put in
different situations to ensure that the infor-
mant’s view was captured. Furthermore, dialog-
ical intersubjectivity was an aim, meaning that
the authors analyzed the interviews separately
and compared their findings. In case of any dis-
crepancies, these were discussed and common
descriptions were formulated. The aim of the
discussions was not to reach consensus, but to
find possible alternative interpretations.46
Results
All the informants were aware that their dis-
ease was fatal. Even if they kept their death at
a discreet distance, not one of them was even
close to denial. They all shared experiences
obtained from their efforts to create a bearable
existence in the face of death. The informants’
cognitive and emotional efforts to do so could
be compared with a pendulum swinging be-
tween dichotomous extremes of life and death.
To Shield the Body and the Self
The body was experienced as a source of conso-
lation and alarm. Every indication that the body
still worked physically, emotionally, or spiritually
was a proof of life. As long as the body was free
from troublesome symptoms, it was possible to
take part in everyday life and to take delight in be-
ing alive. In that way, symptom control helped the
informants to keep death at a discreet distance.
When the disease had harmed the body in a way
that made the seriousness of it all an inevitable
fact, it was still possible for the informants to
hold on to the parts and functions that were intact.
Q: How do you think the disease has
affected your life?
A: Totally! It is.totally! I have tubes all over
in my body, in all directions, and I’m
Vol. 37 No. 1 January 2009
not allowed to eat and I am sick. There is
nothing that is just the same as it was.
Well, my head is but that is the only part.
Q: But has your body changed enormously?
A: The body has changed enormously, yes .
from the belly button and down there is
nothing that is familiar to me, anymore.
Q: .has this affected your personality? Have
you changed?
A: No, no (emphatically), I have not. My
head is still intact.
(Female, 59 years, gynecological cancer)
However, this shield proved weak against
resistant symptoms. Pain, fatigue, nausea, or
impaired coordination difficulties could easily
result in feelings of marked vulnerability and
of being exposed to the vagary of existence.
To face these frightening signs with strength,
courage, perseverance, a sense of humor, and
a capacity not to get too engrossed in dark
thoughts was pointed out as important.
.if the Grim Reaper entered this room I
would bang him on the head with a big stick
and [just urge him] to go away like this
(striking in the air). I have become super-
strong, I am invincible.
(Female, 65 years, ovarian cancer)
Perceptions of the threat were also diminished
by the use of harmless words like ‘‘dots,’’ ‘‘bub-
ble,’’ ‘‘nut,’’ ‘‘him,’’ or ‘‘it’’ instead of tumor or
cancer, and Vitamin C instead of chemotherapy.
Also, diminutive words were used such as ‘‘a bit,’’
‘‘little,’’ ‘‘small,’’ and ‘‘tiny.’’ The threat could be
verbally restricted through different lines of
arguments as well. Despite the fact that this
reasoning was not realistic and could have an
element of magical thinking, it was still helpful.
.I try to think that just as the cancer hit me
and suddenly appeared, it would be possible
for it to disappear too, disappear in the
same sudden way I think. It is so strange,
why shouldn’t it be possible for it to recede
in the same way as it started?
(Female, 63 years, GI cancer)
Togetherness
Togetherness was an important coping strat-
egy to restrain death and it was experienced
on an interindividual level but also in relation
to animals, nature, and something greater. Val-
ued relationships became even more important
Vol. 37 No. 1 January 2009 Coping Strategies When Facing Death
and relationships that had been taken for
granted earlier, often with partners, children,
and grandchildren, were now more cherished.
The informants who had no close family or
friends extended their frames of reference
and involved distant relatives and even staff in
their close circle of acquaintances.
The opportunity to meet already deceased
family members and friends after death was
another aspect of valuable togetherness.
In the actual situation, the depth of relation-
ships sometimes appeared to be unpredict-
able. As some unexpectedly came to an end,
others surprisingly emerged or deepened.
The informants also described a spirit of
community in relation to their own pets but
also with other animals. Because they had
received their diagnosis, their respect for all
forms of life had grown stronger. Togetherness
was also important in relation to some kind of
a transcendent power, not easy to conceptual-
ize but nevertheless of importance. It was
called a higher power, a spiritual guide,
a watching hand, or just a greater something.
You see everything that is alive and how terrific
it is.that there is such an order, even among
animals. I appreciate flowers and everything
that grows, how beautiful it is. Before it was
more like ‘‘OK, this is a bunch of flowers and
it was nice’’ and that was it. I was just running
past them, but now I stop and think about all
the things I will soon be losing. Everything
is so fantastic, so well-arranged I think. For ex-
ample, some birds that will stay together for
a whole life, like swans and swifts. With my
new way of looking at nature, I feel more
that I belong there, that’s the way it actually is.
(Female, 65 years, ovarian cancer)
Also, to remain in a make-believe world for
a while, pretending that one still belonged to
the healthy majority, was a strategy that had
served the purpose to restrain death.
I like visiting museums. I have a cup of coffee
and I sit there. ‘‘I managed to get here,’’ I think
and I enjoy my victory. You force yourself a little
to be able to do things and then you can think
‘‘I’m not sick, I’m well, look I’m sitting here
with all the healthy people!’’ When I’m sur-
rounded by healthy people, I am content.
The fact that it works is a real pick-me-up.
(Female, 69 years, breast cancer)
17
When surrounded by the daily run of things
and people, everything could work out just fine.
Nights were described as an ordeal, the time
when the thoughts about death were most diffi-
cult to control. One of the informants described
how on such occasions she used every possibility
available to be reminded of the presence of
other human beings. She called someone on
the phone and she turned on the lights and
her TV. The sights and sounds from other
human beings helped her to distract herself
from the trying experiences of loneliness and
thoughts about death. The value of together-
ness as a source for coping was present also in
the informants’ thoughts about life after death.
That the soul goes on inside other people, an-
imals or plants and that we, we are connected
with nature in some way, that’s what I think.at
the moment of death you get to know what you
will be.and when you are dead, you will meet
those who have died, in their new forms.
(Male, 54 years, brain tumor)
Involvement
The disease had brought about both feel-
ings of separation and a more restricted life.
These had resulted in feelings of isolation
and forlornness. These experiences could be
counterbalanced by moments that indicated
involvement. To still be able to join in, be
counted upon, fulfill a purpose and share feel-
ings with others, joy and seriousness were
described as important experiences.
The maintenance of commitments and
skills, even if to a limited extent, could serve
as a useful source for coping. A man who
had worked in construction his whole life was
at the time of the interview admitted to the
ward because of a walking disability. Although
almost bedridden there, he planned his dis-
charge back home, and thought about possible
constructions that would make it possible for
him to get onto the family’s beloved balcony.
With help from one’s imagination and magi-
cal thinking, the importance of one’s own in-
volvement could be maintained also after death.
I don’t know where I’m going [after death],
maybe I will be all around. To my grandchil-
dren I say ‘‘I will see you all the time but you
won’t see me. Perhaps you will feel my hand
on your shoulder if you have been up to
18
some extra mischief.’’
(Female, 56 years, breast cancer)
Hope
Rays of hope had sustained the patients
through trying periods of distressing symp-
toms, anxiety, and powerlessness. Their hope
had been linked to so much more than to the
hope of being cured. In the interviews, they
talked about their desire to live without distress-
ing symptoms, their desire to be able to stay at
home or at least be spared from loneliness.
But they also described how they were clutch-
ing at straws to keep their hope that death would
not occur.
Patient: But the last straw will always remain,
I think. Miracles have happened before. It is
true that it was 2000 years since Jesus was
alive but anyway.
Interviewer: Mmmm.
Patient: You can’t let it bother you that it was
so long ago; instead it is about time that it
will happen again, really.
Interviewer: Do you believe in miracles?
Patient: Yes, I do.
(Female, 59 years, gynecological cancer)
Continuation
The informants valued being a part of a life-
twist that had its roots in the past and with
a continuation into the distant future. They
were, much more than before, observant of
the present as a result of a heritage going
back generations. To be a part of that twist,
with all its strands that would continue to exist
for all time, gave some reassurance of immor-
tality. Children and grandchildren were cen-
tral here. Important creations, skills taught,
shared experiences, and providing that which
would be of use for others are additional exam-
ples of lasting strands in the life-twist.
Thoughts about annihilation were frighten-
ing. It was beyond the informants’ comprehen-
sion that death eventually should be followed
by nothingness. It was comforting to try to
hold on to the possibility of a something,
even if it was nothing tangible.
I’m 98% not 100% sure, but I think that we
come back.that we will be reborn in some-
one else, that’s what I think. I think it is
strange, it cannot just come to an end. I
just think that things cannot cease to be.
Sand et al. Vol. 37 No. 1 January 2009
But good heavens, of course it can.but
that’s how I think about it now.
(Female, 70 years, lung cancer)
As a Whole: Counterbalancing Death with
Manifestations of LifedA Tentative Process
The interviews were conducted on one occa-
sion, but they were stories about a process. The
informants described both past experiences
and their thoughts about the future. The pro-
cess was hard to encapsulate in any form of
consecutive stages along a time axis. It was
characterized by tentativeness and erratic re-
sults and conveys a picture that included victo-
ries and failures. The patients strove to control
hurtful feelings originating from their im-
pending death within endurable limits. It was
of the utmost importance for them that hurt-
ful feelings connected with death did not
multiply and consume their whole existence.
Aspects that were pointed out as important
for successful coping were personal factors, sup-
port from others, and a basic assumption about
oneself and the world that could adjust and
embrace death in a way that implies values of
significance. Not only facts with firm links to the
here-and-now reality contributed to the process
of developing useful strategies. Memories, day-
dreams and fantasies were also of importance
(Fig. 1).
Discussion
The inevitability of death is a terrible truth that
people manage to hide from most of their lives.3
The will to live and hold on to life is a strong force
in severely ill people. Even the minimal chances
of a longer life among patients with cancer are
considered sufficient to expose oneself to the
risk of severe side effects from treatments.47
The psychological reactions in the course of
dying are varied 48 and the picture of a swing-
ing psychodynamic pendulum has been used
to illustrate this.49 The pendulum moves be-
tween dichotomous dimensions and gives rise
to different reactions depending both on per-
sonal and environmental factors. The picture
of a pendulum also fits to the actual study.
The informants’ efforts to develop useful strat-
egies aiming to tame death could be compared
with a cognitive and emotional pendulum,
swinging between the extremes of life and
Vol. 37 No. 1 January 2009 Coping Strategies When Facing Death
Life Death
Shielded Unshielded
Togetherness Isolation
Exclusion
Involvement
Hope Resignation
Continuance Annihilation
Fig. 1. The pendulum between factors associated
with life and death. The coping strategies served
the purpose of counterbalancing death with sym-
bolic manifestations of life.
death. The idea, about which aspects charac-
terize life and death, respectively, is individual
but yet to a great extent common in dying per-
sons.48,49 Togetherness, involvement, hope,
and continuance are aspects that most people
probably connect with life, whereas isolation,
exclusion, resignation, and annihilation are
connected with death.
During the swings of the pendulum, the in-
formants used every means available: their
own resources, other people, animals, nature,
a transcendent power, hope, imagination,
and magical thinking. They strove to find fac-
tors that fitted their conceptual system and
supported their inner balance and structure,
all to combat death. Aspects that were essential
in the process are in high degree in accordance
with the model of meaning-focused coping
developed by Crystal Park and Susan Folk-
man.12 They refer to meaning as ‘‘perceptions
of significance’’ (p. 116), and they highlight
the critical role of reappraisal and the impor-
tance ‘‘of achieving congruence between an
individual’s global meaning and the appraised
meaning of a particular event’’ (p. 116).
The new knowledge about how strategies in
the presence of one’s own impending death
can be developed and be used is perhaps the
19
most novel and clinically relevant contribution
of these data. We would like to emphasize that
the sources from which the informants created
their strategies in a real or symbolic way signify
life. Despite all the changes in the usual frame
of reference and their increasing vulnerability,
the sources offered opportunities to develop
strategies that could support the awareness of
life. The function of the strategies was not to
deny death, just to keep it in check. These con-
nections to life helped them to adjust to death
and conclude their existence at their own pace.
They were highly perseverant in their endeavors
and, consequently, their need for connected-
ness and continuance found expression in sev-
eral different ways. The fact that connection
to life and to a symbolic future can counteract
the consequences of terminal illness has been
described earlier in the field of occupational
therapy50 and in the concept of generativity.51
Robert Lifton52 wrote about how humans use
their capacity for symbolization in their efforts
to cope with annihilation. He described a sense
of symbolic immortality that is expressed in five
general modes, which are all in accordance with
the results in the present study: 1) the biological
mode, the sense of living on through children
and grandchildren; 2) the idea of life after
death; 3) through our contributions in the
form of human influences; 4) that we are
a part of an Eternal Nature; and 5) this mode
depends solely on a psychic state. Lifton calls
it ‘‘experiential transcendence,’’ a state where
the usual borders between life and death disap-
pear and the mind of the here-and-now is insep-
arable from the past and the future.
Fantasies, illusions, and magical thinking are
all cognitive and emotional tools. Illusions are
not the opposite of known facts; rather, they
are a way of looking at known facts in a particular
light.21 They can be valuable both in protecting
and prompting constructive thoughts and action.
This has been pointed out both in Shelly Taylor’s
theory of cognitive adjustment21 and in Pär Sal-
ander’s research29,30 about patients with malig-
nant brain tumors. The use of magical thinking
to control a death threat is also to be found in Irv-
ing Yalom’s4 writings about people’s trust in an
‘‘ultimate rescuer’’(p. 117) and confidence in
one’s own ‘‘personal specialness’’(p. 129). Even
if there is a risk to be boxed into a corner when
too much trust is placed in the use of magical
thinking, it is still necessary to be familiar with
20
this psychological dimension. Cancer patients
who try to re-establish a life order often use it.53
As previously mentioned, all the informants
considered themselves nonreligious. The aware-
ness of being connected to a transcendent power
beyond death consequently did not presuppose
any religious confession. This is in accordance
with the secularization that several countries in
the Western part of the world face today.34 In
Sweden, people tend to believe in some kind
of spiritual power, a life force or a personally cre-
ated God who they relate to in a highly individ-
ual way that they created by themselves.35,36
To strive for and maintain control is a basic
need for human beings,13,17e19,21,22,54 at least
during a part of their own existence. Palliative
care patients cannot control the course of the
disease, but if they feel that they are in control
of some of their mundane, day-to-day prob-
lems, this would protect them from being over-
whelmed by negative emotions55 and help
them adjust to the situation.56
The perseverance the informants showed
calls for a sensitivity to their coping patterns,
even if they, at first sight, can be difficult to un-
derstand. When something occurs that violates
the basic assumptions about the natural order
of life, people cope in a way that is possible for
them. It is not necessarily the best way but it is
the only practicable way under the existing
circumstances, at that very moment.
Implications
The pendulum or balancing process between
life and death that is described in this study can
be supported and contested through staff offer-
ing patients the opportunity to talk, pose ques-
tions, and investigate alternative stands and
solutions to the actual situation. While doing
so, it is important that the process is not maneu-
vered by others, either by next-of-kin or by staff.
Such support should be offered, but a person
declining to participate in such an endeavor
has to be respected. The staff needs to be aware
that time can be a facilitating coping factor in
a sensitive and supportive environment,
whereas days that pass by in isolation and invol-
untary loneliness are negative and may hamper
coping. Positive time offers an opportunity to
sort things out and establish a sense of control.
While time is passing by, people can be better
prepared to face reality.
Sand et al. Vol. 37 No. 1 January 2009
Acknowledgments
The authors thank Tony Carlyle for linguis-
tic revision.
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Appendix
Interview Guide
Age/marital status/occupation
Can you tell me something about your
disease?
How long have you been ill?
How do you think the disease has affected you?
Is there anything that seems more important
now, compared with when you were healthy?
Can you tell me if there is anything that can
make you feel happy/strong/hopeful?
Where do you get your courage?
Where do you find consolation?
Can you tell me about something that robs you
of your courage/that makes you feel weak/
frightened?
Vol. 37 No. 1 January 2009
Do you define yourself as religious?
Do you believe in anything?
Where do you find peace?
Do you think that life goes on after death?
Do you believe that existence consists of
something more than what we know for
sure?
Can you tell me about something that really
matters to you?
Have you got a name for those matters we
have been talking about during this
interview?
Is there anything that you consider important
that I haven’t asked?