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Longing for ground in a ground(less) world: a qualitative inquiry of existential suffering Bruce, Anne; Schreiber, Rita; Petrovskaya, Olga; Boston, Patricia Jan 27, 2011

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RESEARCH ARTICLE Open AccessLonging for ground in a ground(less) world:a qualitative inquiry of existential sufferingAnne Bruce1*†, Rita Schreiber1†, Olga Petrovskaya1, Patricia Boston2AbstractBackground: Existential and spiritual concerns are fundamental issues in palliative care and patients frequentlyarticulate these concerns. The purpose of this study was to understand the process of engaging with existentialsuffering at the end of life.Methods: A grounded theory approach was used to explore processes in the context of situated interaction andto explore the process of existential suffering. We began with in vivo codes of participants’ words, and clusteredthese 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 thatresults in an overarching process of Longing for Ground in a Ground(less) World, a wish to minimize theuncomfortable or anxiety-provoking instability of groundlessness. Longing for ground is enacted in threeoverlapping ways: by turning toward one’s discomfort and learning to let go (engaging groundlessness), turningaway 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 whenconsidering how patients and colleagues may experience existential concerns in varying degrees, in their ownfashion, either consciously or unconsciously. Findings emphasize a fluid and dynamic understanding of existentialsuffering and compel health providers to acknowledge the complexity of fear and anxiety while allowing space forthe uniquely fluid nature of these processes for each person. Findings also have implications for health providerswho may gravitate towards the transformational possibilities of encounters with mortality without inviting spacefor less optimistic possibilities of resistance, anger, and despondency that may concurrently arise.BackgroundExistential and spiritual concerns are fundamental issuesin palliative care and patients frequently articulate theseconcerns. Although research on existential concerns hasslowly emerged in recent years, there remains a scarcityof studies about how existential issues are understood,managed and treated in palliative care settings [1]. Asthe metaphoric landscape of palliative care shifts andthe field matures within a broader context of technolo-gical and scientific advances aimed at prolonging andenhancing quality of life [2], palliative care is increas-ingly concentrated on medicalization [3]. This focus pre-sents the complex issue of existential suffering as aunique challenge to the palliative care community thatis only just beginning to understand existential sufferingas a uniquely subjective response [4].Existential distress or suffering has been described as acondition where morbid suffering in patients mayinclude concerns related to hopelessness, futility, mean-inglessness, disappointment, remorse, death anxiety, anda disruption of personal identity [5]. Arthur Frank [6]has stated “suffering is the unspeakable, as opposed towhat can be spoken; it is what remains concealed ...beyond what is tangible even hurtful” (p. 355). Althoughthere have been multiple attempts to define and under-stand existential suffering, this debilitating symptom inthe palliative care context remains a widely discussedyet 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 equally1School of Nursing, University of Victoria, Victoria, British Columbia, CanadaFull list of author information is available at the end of the articleBruce et al. BMC Nursing 2011, 10:2http://www.biomedcentral.com/1472-6955/10/2© 2011 Bruce et al; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative CommonsAttribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction inany medium, provided the original work is properly cited.qualitative research is the methodology of choice tounderstand subjective experience relating to meanings,patterns and relationships [11], few such qualitative stu-dies exists related to the end of life. According toHenoch and Danielson [1], studies to date on existentialsuffering largely include randomized control trials, casestudies, pre and post test quantitative designs, anddescriptive studies. For instance, Wilson et al.’s study[12] employed a combination of a comparative-correla-tional design and a content analysis of semistructuredinterviews to examine suffering in patients withadvanced cancer.There is a scarcity of qualitative research on the innerlife domains of spirituality and existential concerns inactual palliative care settings [13]. More specifically,there is little research evidence around the processes bywhich existential suffering is understood and managedin palliative care. One recent example includes agrounded theory study that explored existential distressin patients with advanced cancer vis-a-vis notions ofhope and meaning from a perspective of palliative careprofessionals working in a Christian hospital in Japan[14]. In contrast, the purpose of this study, situated inCanada, was to understand the process of engaging withexistential suffering at the end of life from the perspec-tives of health care staff, patients, and family careproviders.MethodsWe used grounded theory, a qualitative, systematicapproach used to explore processes in the context ofsituated interaction, to explore the process of existentialsuffering. It involves the concurrent collection and ana-lysis of data to formulate theories that are grounded inthe worlds of the participants [15,16]. The intent ofgrounded theory is to develop a theory that explains thesituated actions and interactions of participants as theyexperience, engage with, and manage, the phenomenonof study. In reporting these findings, we are “grounded-theorizing” [17] rather than presenting a theory thatmight be viewed as static. This is in keeping with one ofthe basic precepts of the method, that grounded theoriesare modifiable in the event of new data coming to light.ParticipantsWe used purposive sampling and snowballing to obtaina sample of 22 participants experienced and knowledge-able with end of life issues. Participants who identifiedthemselves 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 familycaregivers and 10 health care professionals (nurses, cha-plains, social workers, physicians). To explicate the phe-nomenon of study fully and in keeping with groundedtheory precepts [15,16], we sought participants with awide range of experience of existential suffering. Thevaried perspectives on the existential suffering enabledus to “flesh out” its dimensions and properties, andthus, the theory articulated here represents the phenom-enon of existential suffering rather than that of theexperiences of the different groups of participants.Data CollectionWe conducted a series of semi-structured interviewslasting between 60-240 minutes. Wherever possible, wespoke with people in person; in addition we conducted3 telephone interviews with people living too far awayto travel. Three categories of information about partici-pants’ experiences were sought. These included: 1) thenature of existential suffering; 2) responses that arise asa result of existential suffering; and 3) perceptions ofwhat exacerbates or reduces existential suffering. Theinterviews began with an open-ended question includ-ing, “Tell me what it has been like since receiving yourdiagnosis?” or with care providers, “Tell me what it islike being with patients who experience intolerable non-physical suffering?” This was followed by prompts suchas “can you tell me more about that?” The purpose ofthis approach was to elicit the person’s perspective withas few prompts as possible. All interviews were recordedand 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 discussionswith two family caregiver participants.Data AnalysisIn grounded theory, data analysis and data collectionoccur iteratively, and therefore data analysis began withthe first interview and continued throughout the study.Repeatedly we listened to interviews and read tran-scripts, individually and collectively coding at multiplelevels of abstraction. We began with in vivo codes ofparticipants’ words, and clustered these codes at increas-ingly higher levels of abstractions until we were able tobegin theorizing. In team meetings we discussed thedata and kept notes for future reference. Throughoutthe process we wrote memos to clarify concepts andhypothesize connections between ideas, in keeping withgrounded theory traditions.TrustworthinessTo 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 agrounded theory methodology seminar and solicitedfeedback from health professionals at palliative care con-ferences. The use of transcribed data can be associatedBruce et al. BMC Nursing 2011, 10:2http://www.biomedcentral.com/1472-6955/10/2Page 2 of 9with potential bias [19], and to compensate, we listenedto the tapes repeatedly, while reading and re-reading thetext. A grounded theory is said to be sound when it has“fit, work, and grab” [15]. That is, the theory fits thedata and works to explain the variation within the dataset. The notion of “grab” is used to describe the situa-tion in which the findings are immediately recognizableto those who are knowledgeable about the phenomenonof study, in this case, existential suffering at the end oflife.EthicsThe study was conducted in accordance with theCanadian Tri-Council (1998) guidelines for researchinvolving humans, including informed consent. Becauseof the sensitive nature of interviews, we drew on our pro-fessional communication skills as nurses (RS, OP) withpalliative care clinical experience (AB, PB) to ensure theemotional comfort of the participants. Before the studywas underway, approval of the Human Research EthicsBoard of the University of Victoria was received.ResultsWe did not begin with a definition of existential suffer-ing, but instead, sought participants’ understanding ofwhat it meant for them. It became clear that partici-pants’ understandings of existential suffering were asvaried as we see in the literature [1,20,21]. Many feltthat our very existence as human beings necessarilyinvolves suffering, “to be fully human means to suffer.”Over the course of a lifetime, we experience “littledeaths": significant losses that precipitate suffering.However, when faced with one’s own death, sufferingtakes on another dimension. It may be that language isinadequate to talk about acute moments, or “raw experi-ences” of existential suffering because these experiencesrepresent a gap, a space within the continuity of life aswe normally live it. One participant spoke of how thelanguage of psychology or social science is inadequate,and he turned to poetry, literature, and the metaphoriclanguage of religious texts to talk about suffering.Groundlessness: The problemAn essential task of the grounded theorist is to identifythe often-unarticulated basic social problem or challengeshared by participants. For these participants, the chal-lenge was experiencing Groundlessness that results fromwhat one person called “being shaken to the core”.Patients and family members experienced being shakento the core on learning news of a terminal diagnosis.Balfour Mount’s [22] description of the existentialmoment could apply equally to the groundlessness thatcomes with being shaken to the core: “A crack appearsin our carefully crafted concept of reality... The verynature of reality is experienced in a new way. We aresucked into the startling realization that the rules of thegame are not what we had imagined” (p. 93-94).Groundlessness is a time and place of raw experienceand frayed emotions. Participants used emotional termsin describing it, talking about fears, losses, questioning,worrying, discontinuity, pain, despair, frustration andanger. They also used “un” terms such as feelingundone, unravelled, or unhinged to describe beinggroundless. Participants spoke of recognizing life is end-ing, having a profound sense of hopelessness, beingunable to reconcile their experience with their spiritualfaith, not understanding why God is doing this, havingones’ belief system shattered, experiencing extreme dis-sonance. Therese, a physician, provides an example ofanguish and the types of questions a middle-agedpatient experiencing groundlessness asked: “Why me...why now when I finally have my life together... why nowwhen I’ve worked so hard to be a well person–where’sthe justice in this? Where’s the fairness? Is this happen-ing just because my life’s always been unfair? I finallythought I had it figured out and then this...”Others conveyed groundlessness through their feelingsof deep despair and an unmalleable grief. One partici-pant described it as “the sense of hopelessness that isquite unlike anything one has experienced before. Pastcoping mechanisms to make sense no longer work”.Caregivers also experienced groundlessness. In situa-tions when the patient’s suffering seemed irresolvableand no peaceful end was possible, an infectious or rip-pling suffering was evoked for some professional andfamily caregivers. This groundlessness was characterizedas resonating suffering, as one caregiver shared: “[the]struggle in someone else’s life opens up fears and anxi-eties about the transient nature of our own lives here onearth... Maybe not just the fact that we will die, but thefact that we may suffer or face fear and pain”.As illustrated, caregiver suffering was heightened asthe patient’s suffering endured despite all efforts torelieve it. When deprived of the ground of familiarmeanings 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 ProcessNo matter the words or metaphors used, experiencinggroundlessness is profoundly distressing, in that apatient’s world is shattering and his/her fundamentalbeliefs are called into question. Experiencing groundless-ness involves suffering, what one participant called “suf-fering our spirits”, and leads to the search for peace orstability, which we have named Longing for Ground in aGround(less) World. This is the basic social process, atype of core category [16,17], by which participantsBruce et al. BMC Nursing 2011, 10:2http://www.biomedcentral.com/1472-6955/10/2Page 3 of 9make sense of and ameliorate their groundlessness. Wehave put “less” in parentheses to designate that the per-ception of being grounded or groundless is fluid andconstantly shifting. Moreover, without parentheses, thisphrase would sound too futile and deterministic; brokendown into two parts, ground-less embraces possibilitiesfor multiple interpretations. The basic social process ofLonging 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. Theprocess involves moving between engaging groundless-ness, in which people turn toward the discomfort ofgroundlessness and learn to let go; taking refuge in thehabitual, 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, in whichpeople may create a balance within groundlessness andpotentially find comfort in the instability.Engaging groundlessnessEngaging groundlessness is moving into the discomfortof being groundless and working with that instability. Itmay be that life has prepared people by giving them “lit-tle deaths"–losses that have happened along the way, sothat the end of life, though big, is in some sense, “justanother death”. Engaging groundlessness is based on abelief that groundlessness is workable, that one canlearn to let go. This involves learning how to work withand make sense of what life presents now, so that whatwas normal before the diagnosis no longer applies.Instead, participants continuously renegotiate andreconfigure what is normal, as well as the sense of self,of relationships, and so forth. For example, participantsspoke of learning to let go and live with ambiguity.They spoke of (re)connecting or (re)normalizing as waysof making new meanings of what is happening, of livingin the flux, which is in some sense waking up to theuncertainty of human existence that has been there allalong.We heard many stories from health care professionalsabout working with patients experiencing existential suf-fering, helping them find or create new meanings asthey narrated their lives. One chaplain, for example,spoke of “finding the key” to unlock patients’ sufferingand anger that distanced others and helping patientsreconnect with their previous lives. Another chaplaindescribed how she searched for the metaphors used bypatients, for example, “looking beyond the gate” or“playing the hand one is dealt”, and using such languageto open up discussion with patients seemingly locked intheir suffering.On the other hand, the belief that it is the caregiver’sresponsibility to offer “some sort of reassurance, some-thing [the dying] can grab onto” to help relieve patients’suffering is not necessarily helpful, and Sara, a familycaregiver, quickly grew tired of people who just “want tomake nice” and avoid the difficult reality of the situa-tion. For Sara, as for others, it was important to face thereality of death, including one’s 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: “Idon’t know if your mind shuts down and you don’twant to believe it, or I mean right now I don’t feel likeanything’s going on. Like, I’m not sick, I don’t have any-thing, so it’s not tangible where you can put your handson it. So, it’s like, not there. It’s mind-boggling. It’sreally hard to grasp sometimes.” In this way, engaginggroundlessness can involve stepping away from the fluxat 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: “Ithink that as professionals we’re making a choice almostin every encounter: are we going to be open, to beingtouched and then hurting? And feeling pain and lossourselves? Or are we not? And we don’t necessarilymake that decision once and then keep the doors closedor the doors open–our own emotional doors–from thatmoment on, forever and ever. We open them and closethem as our own sense of vulnerability increases ordecreases.” The metaphors of the mind shutting downand the closed doors tellingly show that, even thoughletting go and living in groundlessness and ambiguitymay have become the new reality for both patients andcare providers, this engagement with this new reality isuntenable for very long.Engaging groundlessness requires effort and momentby moment decisions about whether, how, and howmuch to engage at any given point in time. As seen inthe quotes above, engaging is a process rather than acontinuous state of being, because it seems impossibleto engage fully on a constant basis. And, although itmight seem as if engaging groundlessness would relieveexistential suffering, the process of suffering and thegroundlessness of one’s world continue as losses accu-mulate and one’s ability to actively engage groundless-ness diminishes.Taking refuge in the habitualTaking refuge in the habitual is in some sense the oppo-site of engaging groundlessness, as it is turning awayfrom the instability of groundlessness and seeking secur-ity in the familiar. Taking refuge in the habitual involvesskirting, or trying to avoid the existential questions,those “questions some of us refuse to ask”, that inevita-bly arise when facing a terminal illness. In the face ofquestions that challenge us to examine the very core ofour beings and the meanings of our lives, it can beeasier to find comfort in our usual patterns and ways ofBruce et al. BMC Nursing 2011, 10:2http://www.biomedcentral.com/1472-6955/10/2Page 4 of 9thinking. Patients, families, and care providers all spokeof 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 withsuffering by connecting to familiar ideas or conceptualmodels of how the world is/should be, and who one iswithin 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 theworld 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 tolife as it was known before the diagnosis, and playing bythe recognizable rules of the pre-existing narrative struc-ture of how the world works. These familiar ideas arechallenged by the diagnosis, and yet it is possible tohold on, sometimes desperately, so that we use ourideas to surround and protect our core sense of self. Forexample, a respected professional, after being diagnosedwith a terminal illness, accepted a new, prestigious posi-tion, relocated to a distant city, and subsequently diedshortly after. For this person, clinging to a professionalstatus 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 stronglyheld beliefs that provide solace, but that may no longerwork in the current reality. For example, Daisy, a socialworker, described what can happen when at the end oflife people realize that their previously unassailable reli-gious beliefs do not hold them: “Some of the most pro-found despair that I’ve witnessed has been with peoplewho have had strong spiritual faith, and with this [term-inal illness] happening to them they cannot reconcilethe two. They can’t understand why God is doing this, iftheir belief [is] that God is an interventionist God, thatGod answers prayers–they can’t understand that.” Daisyalso described a situation in which a man who hadexperienced a “born-again” event could not understandhow the “God that he so strongly believed had reachedout and saved him [before], could now allow him to dieand leave his little children without him”.Patients spoke of turning away from groundlessness byengaging themselves elsewhere. For example, one parti-cipant with cancer described being disconnected fromhimself 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 recognizedthat he was engaging with a difficult situation in hishabitual fashion, and disconnected from the situation byusing thinking as a way of controlling his fears by takinghimself out of the picture.Taking refuge in the habitual is difficult in the face ofthe inevitably compounding losses at the end of life thatmake it harder to relate to the world through a veil ofideas that can no longer obscure those losses. Yet, as away of Longing for Ground, taking refuge in the habitualcan endure even when it no longer seems to work tomake sense of what is going on. As a refuge, it holdsthe promise of relief of suffering; however, sufferingintensifies as one realizes the impossibility of staying inthis refuge forever. The realization begins to dawn thatthe “old” solid ground is an illusion and one is propelledto search for new ground in the form of new hope, newmeaning, or another untested illusion. One participantdescribed the commonality of the human condition andthe futility of trying to control, circumscribe, and con-tain the groundlessness of dying in this way: “I think alot of times what people struggle with are questions andnot answers and, well, if they struggle with it, whyshouldn’t we? So you’re left with a question... You’re leftwith a ‘well, I don’t know.’ Well there’s a lot of ‘I don’tknowness’ about life. Why should you be spared that?Why should everything be all neatly wrapped up in abox, you know?”In the end, taking refuge in the habitual is a way ofavoiding the inevitability of death and the suffering itentails, albeit temporarily. The ideas and the solidground they seemed to provide prove illusory as theurgency of one’s death overtakes all. In many ways, thesense of being on solid ground provided by takingrefuge in the habitual only masked the reality that wasthere all along: we will all inevitably die, and that dyingwill entail suffering our spirits.Grey, a social worker, described the incompatibilitybetween our notion of being in control and the realitiesof death: “Caregivers deem it their responsibility toaccentuate or augment [patients’] experience of control.What’s the assumption? That you’re maintaining a per-son’s sense of control over their lives. What’s theassumption of that? That they’ve enjoyed that in thepre-morbid state. What I’m trying to suggest is, that’san illusion that is so old - I mean it [control] isentrenched but it doesn’t mean it’s not an illusion. Youare never in control.”Taking refuge in the habitual is a way of dealing withexistential suffering that involves reliance on one’s usualpatterns and familiar grounds. Participants indicatedthat everyone takes refuge in familiar ideas at least occa-sionally when experiencing the groundlessness of exis-tential suffering, some more than others. By takingrefuge in the habitual, we are enabled to engage withour worlds as though nothing has happened (and yet ithas), and set aside (for a time) the inevitability and hor-ror of facing our own immanent mortality.Living in-betweenLiving in-between represents the place where sufferingat the end of life is reconsidered as a person activelyBruce et al. BMC Nursing 2011, 10:2http://www.biomedcentral.com/1472-6955/10/2Page 5 of 9navigates the shifting passage between living and dying.Living in-between, people negotiate the ambiguities ofboth engaging groundlessness with its letting-go, andseeking refuge in the habitual while holding-on. In otherwords, living in-between is an attempt to become com-fortable with constant shifting within the experiences oflosing ground, letting go of that loss, finding a newframe of reference only to realize that it, too, is a tem-porary ground that will slip away.Participants’ difficulty with talking about living in-between, and our difficulty with supporting our theoriz-ing with quotes, may be explained by the very nature ofthis process that we seek to describe. We seek to dressin words that which might lie beyond language: a placewhere people attempt to make sense of new realities,and the painful shifts from losing ground to an illusoryidea of feeling that ground again.Nevertheless, living in-between is a way of living inthe 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 differentperson (cancer patient), and yet...it’s still me. I haven’tchanged–or have I?” The circumstances have changed,the dreams and plans have changed, the priorities havechanged, and yet it is still this life where we are thesame.Daniel, who was recently diagnosed with terminal can-cer, seems to dwell in-between his “normal” and “chan-ged” states: “I mean as much as a life-threatening illnesschanges you, it doesn’t. Changes maybe the thoughtsand certain things you do, but you as a person, I try tocontinue on as normal as possible, just to keep that nor-malcy. So I don’t wake up in the morning and go, ‘Ohwell, I should do this today ‘cause it could be my lastday’”. Life comes to an abrupt halt and yet we carry onas if it is normal. We behave as if there is an objectivereality because it is too much otherwise. Therefore weneed to carry on as normal, knowing that it is not, andyet it cannot be otherwise. What else can you do?At the same time that the immediacy of one’s owndeath may be filled with dread, some participants recog-nized opportunities for joyful experiences. There is arecognition that living in the knowledge of deathenriches life; the experience itself could bring richnessin family relationships previously unknown. In morethan one family, the diagnosis of a terminal canceropened opportunities for renewed, stronger relation-ships. In this way, the shock of facing death can bringgifts.Although existential suffering can lead to openingsand insights and, in Patricia’s view, through suffering webecome more human–this is not always the case. Rawsuffering is more difficult to articulate and it isexpressed on many levels. Leah, a nurse, shared herexperience of working with a terminally-ill woman tor-mented by the realization that she had not loved enoughin her life. The woman was inconsolable and in “direpain that a pain pill would not take away": “...She wouldlament incredibly and wake up sobbing and crying.What ended up happening was the nurses would spendtime holding her and touching her and caressing herand soothing her and...just sort of offering what wecould in that moment until she died... All we coulddemonstrate is loving and compassion to her in themoment and hopefully that made a difference. Whetheryou ever really do or not, you’re not sure... It was herspirit suffering...”In addition to suggesting that suffering at the end oflife does not necessarily become a positive transforma-tional experience, the above quote reveals health careproviders’ feeling 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. Healthcare providers whom we interviewed spoke of learningto “be okay with not being okay.” A social workershared her wisdom gained through many moments ofresonating suffering that it is okay to feel inadequatewhen faced with existential questioning of dying per-sons. A sense of caregivers’ vulnerability and inadequacybrought about by patients’ existential despair may, infact, be the inherently human experience of witnessingdeath. What is more intriguing and paradoxical, thissense of a profound vulnerability evoked in caregivers,far from presenting an impediment to (re)connectingwith a dying person, provides an opening for meaningfuland authentic connection. Resonating suffering can bethe only common experience between the caregiver andthe dying patient.There may be yet another sense of in-between-ness.From the interviews we glimpsed that suffering thatpermeates the struggles to make new meaning andremain in control over one’s life, and the relaxation intoletting go–all that suffering sometimes ceases to existfor the dying person. Perhaps a person finds solace inknowing that his or her life was meaningful and well-lived; perhaps the meaning is re-defined or no longerimportant. But perhaps the whole human frame of refer-ence is transformed, and the notions of life or the worldas being meaningful or meaningless become empty.Searching for meaning is like longing for ground in theworld that is groundless.For example, Patricia described a patient’s familymembers who were trying in vain to make sense of, tofind a meaning in, the dying woman’s unexplainable lin-gering between life and death. In hindsight, Patriciareflected that sometimes life and the world just arewhat they are, and existential suffering at end of life isBruce et al. BMC Nursing 2011, 10:2http://www.biomedcentral.com/1472-6955/10/2Page 6 of 9just that–connected to the finitude of human existenceand to letting go of the attachments that were formedthroughout life.DiscussionFindings suggest the process of existential sufferingbegins with an experience of groundlessness, when oneis shaken to the core. A sense of unravelling, disconnec-tion and fear arise and may last for a short time, occurunexpectedly, or become a prolonged sense of “beingunhinged”. Patients, family members and health provi-ders, experience groundlessness, albeit in differentdegrees. The experience of groundlessness leads touncertainty and the quest for firm footing. This processis conceptualized as Longing for Ground in a Ground(less) World, a wish to minimize the uncomfortable oranxiety-provoking instability of groundlessness. Longingfor ground is enacted in three overlapping ways: byturning toward one’s discomfort and learning to let go(engaging groundlessness), turning away from the dis-comfort, attempting to keep it out of consciousness byclinging to familiar thoughts and ideas (taking refuge inthe habitual), and learning to live within the flux ofinstability and unknowing (living in-between).Findings from this study contribute to understandinghow the processes of existential suffering are experi-enced and managed by patients, families, and healthcare providers. The core process of Longing for Groundin a Ground(less) World is congruent with Irvin Yalom’s[23] theorizing of existential struggle. Yalom’s work onexistential 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’, is thatfear of death is a primordial source of anxiety. Yalom[23] asserts that there is a basic human conflict “thatflows from the individual’s confrontation with the givensof existence” (p. 8). These givens are ultimate concernsthat arise when a person is faced with mortality throughillness, profound loss, or from deep reflection on what itmeans to be human.According to Yalom [23], these ultimate concernsinclude: a) the tension between the inevitability of deathand the wish to continue to be, b) the terrifying realiza-tion that “beneath us there is no ground” (p. 9) andtherefore we are primarily responsible for, indeed arethe authors of, our own world, choices and actions,c) the harsh reality that we are born alone and must diealone, and d) the realization that if death is inevitableand we have the freedom to constitute our world andare 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 experiencethat one participant described as “being shaken to thecore”. Supporting Yalom’s [23] theorizing, our findingshighlight the existential tension between the “confronta-tion with groundlessness and our wish for ground andstructure” (p. 9).It is important for clinicians to consider that if exis-tential concerns are inherent in being human, then allpatients may address them to some degree, in their ownfashion, either consciously or unconsciously when facedwith a serious illness. As Yalom [23] suggests, each per-son experiences the demands of confronting these con-cerns and the groundlessness that ensues, and thishappens in highly individualized ways. A qualitativestudy by De Faye et al. [25] reports patterns of copingwith stressors including existential distress for terminallyill individuals with cancer that align with the findings ofour study. In particular, De Faye et al. identified emo-tion-focused approaches (e.g. catharsis), emotion-focused avoidance (e.g. distancing), and problem-focusedapproaches (e.g. direct action). Although Yalom suggestsa universal, albeit individual, nature of the experience ofgroundlessness at the end of life, this does not implythat existential concerns will be paramount, conscious,or even open for discussion by all patients or healthcare providers. Nevertheless, by accepting an assumptionthat 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 toengage these concerns obliquely or straight on. Healthcare providers can also become aware of their selectiveinattention in the face of their own existential tensionsor when with patients.Although Yalom [23] describes groundlessness asreflecting a sense of meaninglessness, our findings takea broader view. Engaging groundless is a way of facingand leaning into the experience of loss, confusion, fearand uncertainty where loss of meaning is implicated.The compelling quest to make sense and reconstructone’s sense of self and life when it has been unravelledcan be understood as a basic striving to find purposeand meaning. As a way of engaging groundlessness,notions of re-hinging one’s life through meaning makingand re-generating purpose in life are frequently asso-ciated with existential suffering [4,5,26,27].Previous research into existential issues of patientswith serious illnesses emphasizes the importance ofmeaning-making and redefining one’s purpose in life[14,28,29]. In a grounded theory study, Sarenmalm andcolleagues [30] explored the main concerns of twentywomen with recurrent breast cancer. They described theprocess of making sense of living under the shadow ofdeath as the core category illustrating the importance ofmeaning-making and finding new purpose as conditionschange. The women’s capacities to live in the present,not dwelling on the past or future, allowed them to findBruce et al. BMC Nursing 2011, 10:2http://www.biomedcentral.com/1472-6955/10/2Page 7 of 9new ways of being, growing, and creating wellness. Ourtheorizing supports this finding and highlights the needfor patient willingness and readiness to engage in theseways.Whereas the emphasis in meaning making is on creat-ing new understandings and identities, taking refuge inthe habitual is a related yet contrasting process of hold-ing on and retreating from engaging directly. This find-ing is supported by Yalom’s [23] view that althoughhumans experience death anxiety, a constant awarenesswould render us unable to function in the every-day. Hesuggests that fear “must be properly repressed to keepus living with any modicum of comfort” (p. 189) andthat most people develop their own ways of discerninghow much they can handle. The wish to hold onto whatis known, including one’s sense of self-identity, evenwhen old patterns and ideas no longer work, is a pro-cess that can be both useful and constraining. Holdingon to what is familiar, and the wish to return to whatwas normal, is an important issue described in the lit-erature [31]. Consequently, this points to the need forhealth providers to be attentive to how patients andfamilies narrate their experiences, how much they wantto hear, and how “the way things are” may change (ornot) as conditions change.Whereas leaning into fear and anxiety and turningaway towards familiar patterns are presented as distinctways of managing suffering, living in-between is a para-doxical and recursive process that more closely containsopposites. This finding emphasizes a fluid and dynamicunderstanding of people’s experience. Although empiri-cal evidence suggests that positive personal changes mayfollow a confrontation with death, this experience maybe transient and ungraspable. As one participant shared,“my life has changed profoundly and yet it’s still thesame”. Others shared how they felt relief when theirspouses once again recovered from a medical crisis, andyet they also confessed feeling frustrated, wishing to “geton with [their] life” after years of uncertainty. This com-plex experience of being both relieved-and-disappointedspeaks to the complexity of experiences such as feelingboth peace-and-anxiety, or being grounded-and-ground-less. The ambiguous or liminal quality of serious illnessis reported elsewhere [32,33].This has implications for health providers who maygravitate towards the transformational possibilities ofencounters with mortality without leaving room for lessoptimistic possibilities of resistance, anger, and despon-dency that may concurrently arise. Yalom [23] describeshow “death is the condition that makes it possible for usto 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 cautionsnot to be naive about how fraught with fear and anxietythe realization of mortality is. Living in-between com-pels health providers to acknowledge the complexity offear and anxiety while allowing space for the uniquelydynamic nature of these processes for each person.ConclusionFindings suggest that existential concerns are inherentin being human. Resultant theorizing emphasizes a fluidand dynamic understanding of existential suffering andcompels health providers to acknowledge the complexityof fear and anxiety and the uniquely dynamic nature ofthese processes for each person. According to groundedtheory methodology, theorizing is ongoing and open tocontinual revision. Further exploration with people inthe midst of existential suffering is needed to expandcurrent core concepts. While this goal poses ethical con-siderations and pragmatic challenges, further researchinto the nature of groundlessness and longing forground would assist in refining the conditions and char-acteristics that lead to the three processes identifiedhere. In addition, further understanding of how healthcare institutions can support health professionals torecognize and selectively attend to their own discomfortand abilities in order to assess and skilfully enter intoconversations with patients and families is warranted.AcknowledgementsWe would like to acknowledge the Social Science and Humanities ResearchCouncil of Canada (SSHRC) for funding this research and the patients,families, and professional health providers who participated. We alsoacknowledge Linda Shea, Nursing doctoral candidate who contributed withearly data collection and analysis.Author details1School of Nursing, University of Victoria, Victoria, British Columbia, Canada.2Director, Division of Palliative Care, Department of Family Practice,University of British Columbia, Vancouver, British Columbia.Authors’ contributionsAB, RS, and PB designed the study and conducted the interviews andanalysis; OP participated in analysis and manuscript preparation; all authorsread and approved the final manuscript.Competing interestsThe authors declare that they have no competing interests.Received: 6 July 2010 Accepted: 27 January 2011Published: 27 January 2011References1. Henoch I, Danielson E: Existential concerns among patients with cancerand interventions to meet them: an integrative literature review. Psycho-oncology 2009, 18:225-236.2. Bruce A, Boston P: The changing landscape of palliative care: emotionalchallenges for hospice palliative care professionals. 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Support Care Cancer 2008,16(7):779-785.31. Sarenmalm K, Thoren-Jonsson AL, Gaston-Johansson F, Ohlen J: Makingsense of living under the shadow of death: adjusting to a recurrentbreast cancer illness. Qual Health Res 2009, 19(8):1116-1130.32. Browall M, Melin-Johansson C, Strang S, Danielson E, Henoch I: Health carestaff ‘s opinions about existential issues among patients with cancer.Palliat Support Care 2010, 8:59-68.33. Molzahn A, Bruce A, Sheilds L: Learning from stories of people withchronic kidney disease. Nephrol Nurs J 2008, 35(1):13-20.34. Kelly A: Living loss: an exploration of the internal space of liminality.Mortality 2008, 13(4):335-350.Pre-publication historyThe pre-publication history for this paper can be accessed here:http://www.biomedcentral.com/1472-6955/10/2/prepubdoi:10.1186/1472-6955-10-2Cite this article as: Bruce et al.: Longing for ground in a ground(less)world: a qualitative inquiry of existential suffering. BMC Nursing 201110:2.Submit your next manuscript to BioMed Centraland take full advantage of: • Convenient online submission• Thorough peer review• No space constraints or color figure charges• Immediate publication on acceptance• Inclusion in PubMed, CAS, Scopus and Google Scholar• Research which is freely available for redistributionSubmit your manuscript at www.biomedcentral.com/submitBruce et al. BMC Nursing 2011, 10:2http://www.biomedcentral.com/1472-6955/10/2Page 9 of 9


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