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Abstract

Existential and spiritual concerns are fundamental issues in palliative care and patients frequently articulate these concerns. The purpose of this study was to understand the process of engaging with existential suffering at the end of life. A grounded theory approach was used to explore processes in the context of situated interaction and to explore the process of existential suffering. We began with in vivo codes of participants' words, and clustered these codes at increasingly higher levels of abstractions until we were able to theorize. Findings suggest the process of existential suffering begins with an experience of groundlessness that results in an overarching process of Longing for Ground in a Ground(less) World, a wish to minimize the uncomfortable or anxiety-provoking instability of groundlessness. Longing for ground is enacted in three overlapping ways: by turning toward one's discomfort and learning to let go (engaging groundlessness), turning away from the discomfort, attempting to keep it out of consciousness by clinging to familiar thoughts and ideas (taking refuge in the habitual), and learning to live within the flux of instability and unknowing (living in-between). Existential concerns are inherent in being human. This has implications for clinicians when considering how patients and colleagues may experience existential concerns in varying degrees, in their own fashion, either consciously or unconsciously. Findings emphasize a fluid and dynamic understanding of existential suffering and compel health providers to acknowledge the complexity of fear and anxiety while allowing space for the uniquely fluid nature of these processes for each person. Findings also have implications for health providers who may gravitate towards the transformational possibilities of encounters with mortality without inviting space for less optimistic possibilities of resistance, anger, and despondency that may concurrently arise.
RESEARC H ARTIC L E Open Access
Longing for ground in a ground(less) world:
a qualitative inquiry of existential suffering
Anne Bruce
1*
, Rita Schreiber
1
, Olga Petrovskaya
1
, Patricia Boston
2
Abstract
Background: Existential and spiritual concerns are fundamental issues in palliative care and patients frequently
articulate these concerns. The purpose of this study was to understand the process of engaging with existential
suffering at the end of life.
Methods: A grounded theory approach was used to explore processes in the context of situated interaction and
to explore the process of existential suffering. We began with in vivo codes of participantswords, and clustered
these codes at increasingly higher levels of abstractions until we were able to theorize.
Results: Findings suggest the process of existential suffering begins with an experience of groundlessness that
results in an overarching process of Longing for Ground in a Ground(less) World, a wish to minimize the
uncomfortable or anxiety-provoking instability of groundlessness. Longing for ground is enacted in three
overlapping ways: by turning toward ones discomfort and learning to let go (engaging groundlessness), turning
away from the discomfort, attempting to keep it out of consciousness by clinging to familiar thoughts and ideas
(taking refuge in the habitual), and learning to live within the flux of instability and unknowing (living in-between).
Conclusions: Existential concerns are inherent in being human. This has implications for clinicians when
considering how patients and colleagues may experience existential concerns in varying degrees, in their own
fashion, either consciously or unconsciously. Findings emphasize a fluid and dynamic understanding of existential
suffering and compel health providers to acknowledge the complexity of fear and anxiety while allowing space for
the uniquely fluid nature of these processes for each person. Findings also have implications for health providers
who may gravitate towards the transformational possibilities of encounters with mortality without inviting space
for less optimistic possibilities of resistance, anger, and despondency that may concurrently arise.
Background
Existential and spiritual concerns are fundamental issues
in palliative care and patients frequently articulate these
concerns. Although research on existential concerns has
slowly emerged in recent years, there remains a scarcity
of studies about how existential issues are understood,
managed and treated in palliative care settings [1]. As
the metaphoric landscape of palliative care shifts and
the field matures within a broader context of technolo-
gical and scientific advances aimed at prolonging and
enhancing quality of life [2], palliative care is increas-
ingly concentrated on medicalization [3]. This focus pre-
sents the complex issue of existential suffering as a
unique challenge to the palliative care community that
is only just beginning to understand existential suffering
as a uniquely subjective response [4].
Existential distress or suffering has been described as a
condition where morbid suffering in patients may
include concerns related to hopelessness, futility, mean-
inglessness, disappointment, remorse, death anxiety, and
a disruption of personal identity [5]. Arthur Frank [6]
has stated suffering is the unspeakable, as opposed to
what can be spoken; it is what remains concealed ...
beyond what is tangible even hurtful(p. 355). Although
there have been multiple attempts to define and under-
stand existential suffering, this debilitating symptom in
the palliative care context remains a widely discussed
yet ill defined concept [7,8]. Moreover, existential suffer-
ing often remains a neglected symptom of overall suffer-
ing [9,10]. And although researchers have proposed that
* Correspondence: abruce@uvic.ca
Contributed equally
1
School of Nursing, University of Victoria, Victoria, British Columbia, Canada
Full list of author information is available at the end of the article
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© 2011 Bruce et al ; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons
Attribution License (http://creative commons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in
any medium, pro vided the original work is properly cited.
qualitative research is the methodology of choice to
understand subjective experience relating to meanings,
patterns and relationships [11], few such qualitative stu-
dies exists related to the end of life. According to
Henoch and Danielson [1], studies to date on existential
suffering largely include randomized control trials, case
studies, pre and post test quantitative designs, and
descriptive studies. For instance, Wilson et al.sstudy
[12] employed a combination of a comparative-correla-
tional design and a content analysis of semistructured
interviews to examine suffering in patients with
advanced cancer.
There is a scarcity of qualitative research on the inner
life domains of spirituality and existential concerns in
actual palliative care settings [13]. More specifically,
there is little research evidence around the processes by
which existential suffering is understood and managed
in palliative care. One recent example includes a
grounded theory study that explored existential distress
in patients with advanced cancer vis-a-vis notions of
hope and meaning from a perspective of palliative care
professionals working in a Christian hospital in Japan
[14]. In contrast, the purpose of this study, situated in
Canada, was to understand the process of engaging with
existential suffering at the end of life from the perspec-
tives of health care staff, patients, and family care
providers.
Methods
We used grounded theory, a qualitative, systematic
approach used to explore processes in the context of
situated interaction, to explore the process of existential
suffering. It involves the concurrent collection and ana-
lysis of data to formulate theories that are grounded in
the worlds of the participants [15,16]. The intent of
grounded theory is to develop a theory that explains the
situated actions and interactions of participants as they
experience, engage with, and manage, the phenomenon
of study. In reporting these findings, we are grounded-
theorizing[17] rather than presenting a theory that
might be viewed as static. This is in keeping with one of
the basic precepts of the method, that grounded theories
are modifiable in the event of new data coming to light.
Participants
We used purposive sampling and snowballing to obtain
a sample of 22 participants experienced and knowledge-
able with end of life issues. Participants who identified
themselves as having experience with existential suffer-
ing at the end of life were included in the study. Partici-
pants included 6 people with a cancer illness, 6 family
caregivers and 10 health care professionals (nurses, cha-
plains, social workers, physicians). To explicate the phe-
nomenon of study fully and in keeping with grounded
theory precepts [15,16], we sought participants with a
widerangeofexperienceofexistentialsuffering.The
varied perspectives on the existential suffering enabled
us to flesh outits dimensions and properties, and
thus, the theory articulated here represents the phenom-
enon of existential suffering rather than that of the
experiences of the different groups of participants.
Data Collection
We conducted a series of semi-structured interviews
lasting between 60-240 minutes. Wherever possible, we
spoke with people in person; in addition we conducted
3 telephone interviews with people living too far away
to travel. Three categories of information about partici-
pantsexperiences were sought. These included: 1) the
nature of existential suffering; 2) responses that arise as
a result of existential suffering; and 3) perceptions of
what exacerbates or reduces existential suffering. The
interviews began with an open-ended question includ-
ing, Tell me what it has been like since receiving your
diagnosis?or with care providers, Tell me what it is
like being with patients who experience intolerable non-
physical suffering?This was followed by prompts such
as can you tell me more about that?The purpose of
this approach was to elicit the persons perspective with
as few prompts as possible. All interviews were recorded
and transcribed verbatim by a transcriptionist. We con-
ducted two follow up interviews (for a total of 24 inter-
views) and have engaged in extensive email discussions
with two family caregiver participants.
Data Analysis
In grounded theory, data analysis and data collection
occur iteratively, and therefore data analysis began with
the first interview and continued throughout the study.
Repeatedly we listened to interviews and read tran-
scripts, individually and collectively coding at multiple
levels of abstraction. We began with in vivo codes of
participantswords, and clustered these codes at increas-
inglyhigherlevelsofabstractionsuntilwewereableto
begin theorizing. In team meetings we discussed the
data and kept notes for future reference. Throughout
the process we wrote memos to clarify concepts and
hypothesize connections between ideas, in keeping with
grounded theory traditions.
Trustworthiness
To ensure trustworthiness of the study and its findings,
verbatim transcription, constant comparison, and persis-
tent and prolonged engagement with the data were used
[18]. In addition, we used peer debriefing within a
grounded theory methodology seminar and solicited
feedback from health professionals at palliative care con-
ferences. The use of transcribed data can be associated
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with potential bias [19], and to compensate, we listened
to the tapes repeatedly, while reading and re-reading the
text. A grounded theory is said to be sound when it has
fit, work, and grab[15]. That is, the theory fits the
data and works to explain the variation within the data
set. The notion of grabis used to describe the situa-
tion in which the findings are immediately recognizable
to those who are knowledgeable about the phenomenon
of study, in this case, existential suffering at the end of
life.
Ethics
The study was conducted in accordance with the
Canadian Tri-Council (1998) guidelines for research
involving humans, including informed consent. Because
of the sensitive nature of interviews, we drew on our pro-
fessional communication skills as nurses (RS, OP) with
palliative care clinical experience (AB, PB) to ensure the
emotional comfort of the participants. Before the study
was underway, approval of the Human Research Ethics
Board of the University of Victoria was received.
Results
We did not begin with a definition of existential suffer-
ing, but instead, sought participantsunderstanding of
what it meant for them. It became clear that partici-
pantsunderstandings of existential suffering were as
varied as we see in the literature [1,20,21]. Many felt
that our very existence as human beings necessarily
involves suffering, to be fully human means to suffer.
Over the course of a lifetime, we experience little
deaths": significant losses that precipitate suffering.
However, when faced with ones own death, suffering
takes on another dimension. It may be that language is
inadequate to talk about acute moments, or raw experi-
encesof existential suffering because these experiences
represent a gap, a space within the continuity of life as
we normally live it. One participant spoke of how the
language of psychology or social science is inadequate,
and he turned to poetry, literature, and the metaphoric
language of religious texts to talk about suffering.
Groundlessness: The problem
An essential task of the grounded theorist is to identify
the often-unarticulated basic social problem or challenge
shared by participants. For these participants, the chal-
lenge was experiencing Groundlessness that results from
what one person called being shaken to the core.
Patients and family members experienced being shaken
to the core on learning news of a terminal diagnosis.
Balfour Mounts [22] description of the existential
moment could apply equally to the groundlessness that
comes with being shaken to the core: A crack appears
in our carefully crafted concept of reality... The very
nature of reality is experienced in a new way. We are
sucked into the startling realization that the rules of the
game are not what we had imagined(p. 93-94).
Groundlessness is a time and place of raw experience
and frayed emotions. Participants used emotional terms
in describing it, talking about fears, losses, questioning,
worrying, discontinuity, pain, despair, frustration and
anger. They also used untermssuchasfeeling
undone, unravelled, or unhinged to describe being
groundless. Participants spoke of recognizing life is end-
ing, having a profound sense of hopelessness, being
unable to reconcile their experience with their spiritual
faith, not understanding why God is doing this, having
onesbelief system shattered, experiencing extreme dis-
sonance. Therese, a physician, provides an example of
anguish and the types of questions a middle-aged
patient experiencing groundlessness asked: Why me...
why now when I finally have my life together... why now
when Ive worked so hard to be a well personwheres
the justice in this? Wheres the fairness? Is this happen-
ing just because my lifes always been unfair? I finally
thought I had it figured out and then this...
Others conveyed groundlessness through their feelings
of deep despair and an unmalleable grief. One partici-
pant described it as the sense of hopelessness that is
quite unlike anything one has experienced before. Past
coping mechanisms to make sense no longer work.
Caregivers also experienced groundlessness. In situa-
tions when the patients suffering seemed irresolvable
and no peaceful end was possible, an infectious or rip-
pling suffering was evoked for some professional and
family caregivers. This groundlessness was characterized
as resonating suffering, as one caregiver shared: [the]
struggle in someone elses life opens up fears and anxi-
eties about the transient nature of our own lives here on
earth... Maybe not just the fact that we will die, but the
fact that we may suffer or face fear and pain.
As illustrated, caregiver suffering was heightened as
the patients suffering endured despite all efforts to
relieve it. When deprived of the ground of familiar
meanings and connections, patients, families, and pro-
fessional caregivers all engage, albeit somewhat differ-
ently, in the search for stability and grounding.
Longing for Ground in a Ground(less) World: The Process
No matter the words or metaphors used, experiencing
groundlessnessisprofoundly distressing, in that a
patients world is shattering and his/her fundamental
beliefs are called into question. Experiencing groundless-
ness involves suffering, what one participant called suf-
fering our spirits, and leads to the search for peace or
stability, which we have named Longing for Ground in a
Ground(less) World. This is the basic social process, a
type of core category [16,17], by which participants
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make sense of and ameliorate their groundlessness. We
have put lessin parentheses to designate that the per-
ception of being grounded or groundless is fluid and
constantly shifting. Moreover, without parentheses, this
phrase would sound too futile and deterministic; broken
down into two parts, ground-less embraces possibilities
for multiple interpretations. The basic social process of
Longing for Ground in a Ground(less) World is com-
prised of three categories: engaging groundlessness, tak-
ing refuge in the habitual, and living in-between. The
process involves moving between engaging groundless-
ness, in which people turn toward the discomfort of
groundlessness and learn to let go; taking refuge in the
habitual, in which people turn away from the discom-
fort, attempting to keep it out of consciousness by cling-
ing to the familiar; and living in-between,inwhich
people may create a balance within groundlessness and
potentially find comfort in the instability.
Engaging groundlessness
Engaging groundlessness is moving into the discomfort
of being groundless and working with that instability. It
may be that life has prepared people by giving them lit-
tle deaths"losses that have happened along the way, so
that the end of life, though big, is in some sense, just
another death. Engaging groundlessness is based on a
belief that groundlessness is workable, that one can
learn to let go. This involves learning how to work with
and make sense of what life presents now, so that what
was normal before the diagnosis no longer applies.
Instead, participants continuously renegotiate and
reconfigure what is normal, as well as the sense of self,
of relationships, and so forth. For example, participants
spoke of learning to let go and live with ambiguity.
They spoke of (re)connecting or (re)normalizing as ways
of making new meanings of what is happening, of living
in the flux, which is in some sense waking up to the
uncertainty of human existence that has been there all
along.
We heard many stories from health care professionals
about working with patients experiencing existential suf-
fering, helping them find or create new meanings as
they narrated their lives. Onechaplain,forexample,
spoke of finding the keyto unlock patientssuffering
and anger that distanced others and helping patients
reconnect with their previous lives. Another chaplain
described how she searched for the metaphors used by
patients, for example, looking beyond the gateor
playing the hand one is dealt, and using such language
to open up discussion with patients seemingly locked in
their suffering.
On the other hand, the belief that it is the caregivers
responsibility to offer some sort of reassurance, some-
thing [the dying] can grab ontoto help relieve patients
suffering is not necessarily helpful, and Sara, a family
caregiver, quickly grew tired of people who just want to
make niceand avoid the difficult reality of the situa-
tion. For Sara, as for others, it was important to face the
reality of death, including ones own death.
Yet the process of engaging groundlessness is not con-
stant. For example, Daniel, who has a terminal diagno-
sis, spoke about needing times when he disengages: I
dontknowifyourmindshutsdownandyoudont
want to believe it, or I mean right now I dont feel like
anythings going on. Like, Im not sick, I dont have any-
thing, so its not tangible where you can put your hands
on it. So, itslike,notthere.Its mind-boggling. Its
really hard to grasp sometimes.In this way, engaging
groundlessness can involve stepping away from the flux
at times when it becomes too much.
Similar to Daniel, a social worker described the recur-
ring critical moments that make up the process of enga-
ging groundlessness as experienced by providers: I
think that as professionals were making a choice almost
in every encounter: are we going to be open, to being
touched and then hurting? And feeling pain and loss
ourselves?Orarewenot?Andwedont necessarily
make that decision once and then keep the doors closed
or the doors openour own emotional doorsfrom that
moment on, forever and ever. We open them and close
them as our own sense of vulnerability increases or
decreases.The metaphors of the mind shutting down
and the closed doors tellingly show that, even though
letting go and living in groundlessness and ambiguity
may have become the new reality for both patients and
care providers, this engagement with this new reality is
untenable for very long.
Engaging groundlessness requires effort and moment
by moment decisions about whether, how, and how
much to engage at any given point in time. As seen in
the quotes above, engaging is a process rather than a
continuous state of being, because it seems impossible
to engage fully on a constant basis. And, although it
might seem as if engaging groundlessness would relieve
existential suffering, the process of suffering and the
groundlessness of ones world continue as losses accu-
mulate and ones ability to actively engage groundless-
ness diminishes.
Taking refuge in the habitual
Taking refuge in the habitual is in some sense the oppo-
site of engaging groundlessness, as it is turning away
from the instability of groundlessness and seeking secur-
ity in the familiar. Taking refuge in the habitual involves
skirting,ortryingtoavoidtheexistentialquestions,
those questions some of us refuse to ask, that inevita-
blyarisewhenfacingaterminalillness.Inthefaceof
questions that challenge us to examine the very core of
our beings and the meanings of our lives, it can be
easier to find comfort in our usual patterns and ways of
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thinking. Patients, families, and care providers all spoke
of the need to retreat from the inevitable and take relief,
however temporary, in the known.
Taking refuge in the habitual is a way of dealing with
suffering by connecting to familiar ideas or conceptual
models of how the world is/should be, and who one is
within it. Taking refuge in the habitual is a way of Long-
ing for Ground within the emotional maelstrom of exis-
tential suffering by using cognitive means, seeing the
world through familiar eyes and relating to it as if noth-
ing has changed. For patient and family caregiver parti-
cipants, taking refuge in the habitual involves relating to
life as it was known before the diagnosis, and playing by
the recognizable rules of the pre-existing narrative struc-
ture of how the world works. These familiar ideas are
challenged by the diagnosis, and yet it is possible to
hold on, sometimes desperately, so that we use our
ideas to surround and protect our core sense of self. For
example, a respected professional, after being diagnosed
with a terminal illness, accepted a new, prestigious posi-
tion, relocated to a distant city, and subsequently died
shortly after. For this person, clinging to a professional
status was clearly important. Taking refuge in the habi-
tual is often about control, distancing, and disconnec-
tion, and ultimately may prove illusory.
Sometimes people engage the world through strongly
held beliefs that provide solace, but that may no longer
work in the current reality. For example, Daisy, a social
worker, described what can happen when at the end of
life people realize that their previously unassailable reli-
gious beliefs do not hold them: Some of the most pro-
found despair that Ive witnessed has been with people
who have had strong spiritual faith, and with this [term-
inal illness] happening to them they cannot reconcile
the two. They cant understand why God is doing this, if
their belief [is] that God is an interventionist God, that
God answers prayersthey cant understand that.Daisy
also described a situation in which a man who had
experienced a born-againevent could not understand
how the God that he so strongly believed had reached
out and saved him [before], could now allow him to die
and leave his little children without him.
Patients spoke of turning away from groundlessness by
engaging themselves elsewhere. For example, one parti-
cipant with cancer described being disconnected from
himself and what was happening around him by escap-
ing into what he called mindgames. At the same time,
he wondered why he was doing this, and recognized
that he was engaging with a difficult situation in his
habitual fashion, and disconnected from the situation by
using thinking as a way of controlling his fears by taking
himself out of the picture.
Taking refuge in the habitual is difficult in the face of
the inevitably compounding losses at the end of life that
make it harder to relate to the world through a veil of
ideas that can no longer obscure those losses. Yet, as a
way of Longing for Ground, taking refuge in the habitual
can endure even when it no longer seems to work to
make sense of what is going on. As a refuge, it holds
the promise of relief of suffering; however, suffering
intensifies as one realizes the impossibility of staying in
this refuge forever. The realization begins to dawn that
the oldsolid ground is an illusion and one is propelled
to search for new ground in the form of new hope, new
meaning, or another untested illusion. One participant
described the commonality of the human condition and
the futility of trying to control, circumscribe, and con-
tain the groundlessness of dying in this way: Ithinka
lot of times what people struggle with are questions and
not answers and, well, if they struggle with it, why
shouldnt we? So youre left with a question... Youre left
with a well, I dontknow.Well theresalotofIdont
knownessabout life. Why should you be spared that?
Why should everything be all neatly wrapped up in a
box, you know?
In the end, taking refuge in the habitual is a way of
avoiding the inevitability of death and the suffering it
entails, albeit temporarily. The ideas and the solid
ground they seemed to provide prove illusory as the
urgency of ones death overtakes all. In many ways, the
senseofbeingonsolidgroundprovidedbytaking
refuge in the habitual only masked the reality that was
there all along: we will all inevitably die, and that dying
will entail suffering our spirits.
Grey, a social worker, described the incompatibility
between our notion of being in control and the realities
of death: Caregivers deem it their responsibility to
accentuate or augment [patients] experience of control.
Whats the assumption? That youre maintaining a per-
sons sense of control over their lives. Whatsthe
assumption of that? That theyve enjoyed that in the
pre-morbid state. What Im trying to suggest is, thats
an illusion that is so old - I mean it [control] is
entrenched but it doesnt mean its not an illusion. You
are never in control.
Taking refuge in the habitual is a way of dealing with
existential suffering that involves reliance on ones usual
patterns and familiar grounds. Participants indicated
that everyone takes refuge in familiar ideas at least occa-
sionally when experiencing the groundlessness of exis-
tential suffering, some more than others. By taking
refuge in the habitual, we are enabled to engage with
our worlds as though nothing has happened (and yet it
has), and set aside (for a time) the inevitability and hor-
ror of facing our own immanent mortality.
Living in-between
Living in-between represents the place where suffering
at the end of life is reconsidered as a person actively
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navigates the shifting passage between living and dying.
Living in-between, people negotiate the ambiguities of
both engaging groundlessness with its letting-go, and
seeking refuge in the habitual while holding-on. In other
words, living in-between is an attempt to become com-
fortable with constant shifting within the experiences of
losing ground, letting go of that loss, finding a new
frame of reference only to realize that it, too, is a tem-
porary ground that will slip away.
Participantsdifficulty with talking about living in-
between, and our difficulty with supporting our theoriz-
ingwithquotes,maybeexplainedbytheverynatureof
this process that we seek to describe. We seek to dress
in words that which might lie beyond language: a place
where people attempt to make sense of new realities,
and the painful shifts from losing ground to an illusory
idea of feeling that ground again.
Nevertheless, living in-between is a way of living in
the flux of knowing that in many ways things are pro-
foundly changed, yet at the same time they are not. Liv-
ing in-between, one might think: I am a different
person (cancer patient), and yet...its still me. Ihavent
changedor have I?The circumstances have changed,
the dreams and plans have changed, the priorities have
changed, and yet it is still this life where we are the
same.
Daniel, who was recently diagnosed with terminal can-
cer, seems to dwell in-between his normaland chan-
gedstates: I mean as much as a life-threatening illness
changes you, it doesnt. Changes maybe the thoughts
and certain things you do, but you as a person, I try to
continue on as normal as possible, just to keep that nor-
malcy. So I dontwakeupinthemorningandgo,Oh
well, I should do this today cause it could be my last
day’”. Life comes to an abrupt halt and yet we carry on
as if it is normal. We behave as if there is an objective
reality because it is too much otherwise. Therefore we
need to carry on as normal, knowing that it is not, and
yet it cannot be otherwise. What else can you do?
Atthesametimethattheimmediacyofonesown
death may be filled with dread, some participants recog-
nized opportunities for joyful experiences. There is a
recognition that living in the knowledge of death
enriches life; the experience itself could bring richness
in family relationships previously unknown. In more
than one family, the diagnosis of a terminal cancer
opened opportunities for renewed, stronger relation-
ships. In this way, the shock of facing death can bring
gifts.
Although existential suffering can lead to openings
and insights and, in Patricias view, through suffering we
become more humanthis is not always the case. Raw
suffering is more difficult to articulate and it is
expressed on many levels. Leah, a nurse, shared her
experience of working with a terminally-ill woman tor-
mented by the realization that she had not loved enough
in her life. The woman was inconsolable and in dire
pain that a pain pill would not take away": ...She would
lament incredibly and wake up sobbing and crying.
Whatendeduphappeningwasthenurseswouldspend
time holding her and touching her and caressing her
and soothing her and...just sort of offering what we
couldinthatmomentuntilshedied...Allwecould
demonstrate is loving and compassion to her in the
moment and hopefully that made a difference. Whether
you ever really do or not, youre not sure... It was her
spirit suffering...
In addition to suggesting that suffering at the end of
life does not necessarily become a positive transforma-
tional experience, the above quote reveals health care
providersfeeling of ambiguity and in-between-ness.
Resonating suffering of care providers is often an in-
between place of knowing they have done all they could,
yet not knowing or feeling if that was enough. Health
care providers whom we interviewed spoke of learning
to be okay with not being okay.As
ocialworker
shared her wisdom gained through many moments of
resonating suffering that it is okay to feel inadequate
when faced with existential questioning of dying per-
sons. A sense of caregiversvulnerability and inadequacy
brought about by patientsexistential despair may, in
fact, be the inherently human experience of witnessing
death. What is more intriguing and paradoxical, this
sense of a profound vulnerability evoked in caregivers,
far from presenting an impediment to (re)connecting
with a dying person, provides an opening for meaningful
and authentic connection. Resonating suffering can be
the only common experience between the caregiver and
the dying patient.
There may be yet another sense of in-between-ness.
From the interviews we glimpsed that suffering that
permeates the struggles to make new meaning and
remain in control over ones life, and the relaxation into
letting goall that suffering sometimes ceases to exist
for the dying person. Perhaps a person finds solace in
knowing that his or her life was meaningful and well-
lived; perhaps the meaning is re-defined or no longer
important. But perhaps the whole human frame of refer-
ence is transformed, and the notions of life or the world
as being meaningful or meaningless become empty.
Searching for meaning is like longing for ground in the
world that is groundless.
For example, Patricia described a patientsfamily
members who were trying in vain to make sense of, to
find a meaning in, the dying womans unexplainable lin-
gering between life and death. In hindsight, Patricia
reflected that sometimes life and the world just are
what they are, and existential suffering at end of life is
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just thatconnected to the finitude of human existence
and to letting go of the attachments that were formed
throughout life.
Discussion
Findings suggest the process of existential suffering
begins with an experience of groundlessness, when one
is shaken to the core. A sense of unravelling, disconnec-
tion and fear arise and may last for a short time, occur
unexpectedly, or become a prolonged sense of being
unhinged. Patients, family members and health provi-
ders, experience groundlessness, albeit in different
degrees. The experience of groundlessness leads to
uncertainty and the quest for firm footing. This process
is conceptualized as Longing for Ground in a Ground
(less) World, a wish to minimize the uncomfortable or
anxiety-provoking instability of groundlessness. Longing
for ground is enacted in three overlapping ways: by
turning toward ones discomfort and learning to let go
(engaging groundlessness), turning away from the dis-
comfort, attempting to keep it out of consciousness by
clinging to familiar thoughts and ideas (taking refuge in
the habitual), and learning to live within the flux of
instability and unknowing (living in-between).
Findings from this study contribute to understanding
how the processes of existential suffering are experi-
enced and managed by patients, families, and health
care providers. The core process of Longing for Ground
in a Ground(less) World is congruent with Irvin Yaloms
[23] theorizing of existential struggle. Yalomsworkon
existential concerns [23] and facing the terror of death
[24] is rooted in his work as a psychiatrist and psycho-
analyst. His premise, like many other scholars,isthat
fear of death is a primordial source of anxiety. Yalom
[23] asserts that there is a basic human conflict that
flows from the individuals confrontation with the givens
of existence(p. 8). These givens are ultimate concerns
that arise when a person is faced with mortality through
illness, profound loss, or from deep reflection on what it
means to be human.
According to Yalom [23], these ultimate concerns
include: a) the tension between the inevitability of death
and the wish to continue to be, b) the terrifying realiza-
tion that beneath us there is no ground(p. 9) and
therefore we are primarily responsible for, indeed are
the authors of, our own world, choices and actions,
c) the harsh reality that we are born alone and must die
alone, and d) the realization that if death is inevitable
and we have the freedom to constitute our world and
are ultimately alone, then what is the purpose of life?
What meaning does life have? When people come face-
to-face with such concerns, it permits raw death anxi-
ety to erupt into consciousness(p. 44), an experience
that one participant described as being shaken to the
core. Supporting Yaloms [23] theorizing, our findings
highlight the existential tension between the confronta-
tion with groundlessness and our wish for ground and
structure(p. 9).
It is important for clinicians to consider that if exis-
tential concerns are inherent in being human, then all
patients may address them to some degree, in their own
fashion, either consciously or unconsciously when faced
with a serious illness. As Yalom [23] suggests, each per-
son experiences the demands of confronting these con-
cerns and the groundlessness that ensues, and this
happens in highly individualized ways. A qualitative
studybyDeFayeetal.[25]reportspatternsofcoping
with stressors including existential distress for terminally
ill individuals with cancer that align with the findings of
our study. In particular, De Faye et al. identified emo-
tion-focused approaches (e.g. catharsis), emotion-
focused avoidance (e.g. distancing), and problem-focused
approaches (e.g. direct action). Although Yalom suggests
a universal, albeit individual, nature of the experience of
groundlessness at the end of life, this does not imply
that existential concerns will be paramount, conscious,
or even open for discussion by all patients or health
care providers. Nevertheless, by accepting an assumption
that existential facts of life, as Yalom describes them,
are part of the terrain of sickness and death, health pro-
viders can attune themselves to patients who do wish to
engage these concerns obliquely or straight on. Health
care providers can also become aware of their selective
inattention in the face of their own existential tensions
or when with patients.
Although Yalom [23] describes groundlessness as
reflecting a sense of meaninglessness, our findings take
a broader view. Engaging groundless is a way of facing
and leaning into the experience of loss, confusion, fear
and uncertainty where loss of meaning is implicated.
The compelling quest to make sense and reconstruct
ones sense of self and life when it has been unravelled
can be understood as a basic striving to find purpose
and meaning. As a way of engaging groundlessness,
notions of re-hinging ones life through meaning making
and re-generating purpose in life are frequently asso-
ciated with existential suffering [4,5,26,27].
Previous research into existential issues of patients
with serious illnesses emphasizes the importance of
meaning-making and redefining ones purpose in life
[14,28,29]. In a grounded theory study, Sarenmalm and
colleagues [30] explored the main concerns of twenty
women with recurrent breast cancer. They described the
process of making sense of living under the shadow of
death as the core category illustrating the importance of
meaning-making and finding new purpose as conditions
change. The womens capacities to live in the present,
not dwelling on the past or future, allowed them to find
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new ways of being, growing, and creating wellness. Our
theorizing supports this finding and highlights the need
for patient willingness and readiness to engage in these
ways.
Whereas the emphasis in meaning making is on creat-
ing new understandings and identities, taking refuge in
the habitual is a related yet contrasting process of hold-
ing on and retreating from engaging directly. This find-
ing is supported by Yaloms[23]viewthatalthough
humans experience death anxiety, a constant awareness
would render us unable to function in the every-day. He
suggests that fear must be properly repressed to keep
us living with any modicum of comfort(p. 189) and
that most people develop their own ways of discerning
how much they can handle. The wish to hold onto what
is known, including ones sense of self-identity, even
when old patterns and ideas no longer work, is a pro-
cess that can be both useful and constraining. Holding
on to what is familiar, and the wish to return to what
was normal, is an important issue described in the lit-
erature [31]. Consequently, this points to the need for
health providers to be attentive to how patients and
families narrate their experiences, how much they want
to hear, and how the way things aremay change (or
not) as conditions change.
Whereas leaning into fear and anxiety and turning
away towards familiar patterns are presented as distinct
ways of managing suffering, living in-between is a para-
doxical and recursive process that more closely contains
opposites. This finding emphasizes a fluid and dynamic
understanding of peoples experience. Although empiri-
cal evidence suggests that positive personal changes may
follow a confrontation with death, this experience may
be transient and ungraspable. As one participant shared,
my life has changed profoundly and yet its still the
same. Others shared how they felt relief when their
spouses once again recovered from a medical crisis, and
yet they also confessed feeling frustrated, wishing to get
on with [their] lifeafter years of uncertainty. This com-
plex experience of being both relieved-and-disappointed
speaks to the complexity of experiences such as feeling
both peace-and-anxiety, or being grounded-and-ground-
less. The ambiguous or liminal quality of serious illness
is reported elsewhere [32,33].
This has implications for health providers who may
gravitate towards the transformational possibilities of
encounters with mortality without leaving room for less
optimistic possibilities of resistance, anger, and despon-
dency that may concurrently arise. Yalom [23] describes
how death is the condition that makes it possible for us
to live life in an authentic fashion(p. 31). However,
even as the transformative possibilities of existential dis-
tress are reported in the literature [30], Yalom cautions
not to be naive about how fraught with fear and anxiety
the realization of mortality is. Living in-between com-
pels health providers to acknowledge the complexity of
fear and anxiety while allowing space for the uniquely
dynamic nature of these processes for each person.
Conclusion
Findings suggest that existential concerns are inherent
in being human. Resultant theorizing emphasizes a fluid
and dynamic understanding of existential suffering and
compels health providers to acknowledge the complexity
of fear and anxiety and the uniquely dynamic nature of
these processes for each person. According to grounded
theory methodology, theorizing is ongoing and open to
continual revision. Further exploration with people in
the midst of existential suffering is needed to expand
current core concepts. While this goal poses ethical con-
siderations and pragmatic challenges, further research
into the nature of groundlessness and longing for
ground would assist in refining the conditions and char-
acteristics that lead to the three processes identified
here. In addition, further understanding of how health
care institutions can support health professionals to
recognize and selectively attend to their own discomfort
and abilities in order to assess and skilfully enter into
conversations with patients and families is warranted.
Acknowledgements
We would like to acknowledge the Social Science and Humanities Research
Council of Canada (SSHRC) for funding this research and the patients,
families, and professional health providers who participated. We also
acknowledge Linda Shea, Nursing doctoral candidate who contributed with
early data collection and analysis.
Author details
1
School of Nursing, University of Victoria, Victoria, British Columbia, Canada.
2
Director, Division of Palliative Care, Department of Family Practice,
University of British Columbia, Vancouver, British Columbia.
Authorscontributions
AB, RS, and PB designed the study and conducted the interviews and
analysis; OP participated in analysis and manuscript preparation; all authors
read and approved the final manuscript.
Competing interests
The authors declare that they have no competing interests.
Received: 6 July 2010 Accepted: 27 January 2011
Published: 27 January 2011
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Transcription is an integral process in the qualitative analysis of language data and is widely employed in basic and applied research across a number of disciplines and in professional practice fields. Yet, methodological and theoretical issues associated with the transcription process have received scant attention in the research literature. In this article, the authors present a cross-disciplinary conceptual review of the place of transcription in qualitative inquiry, in which the nature of transcription and the epistemological assumptions on which it rests are considered. The authors conclude that transcription is theory laden; the choices that researchers make about transcription enact the theories they hold and constrain the interpretations they can draw from their data. Because it has implications for the interpretation of research data and for decision making in practice fields, transcription as a process warrants further investigation.
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