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A Meta-ethnography of Out-of-Hospital Cardiac Arrest Survivors’ Meanings on Life and Death

Aristidou, Maria, MSc, RN; Vouzavali, Fotini, PhD, MSc, RN; Karanikola, Maria, N., PhD, MSc, RN; Lambrinou, Ekaterini, PhD, MSc, RN; Papathanassoglou, Elizabeth, PhD, MSc, RN

The Journal of Cardiovascular Nursing: May/June 2018 - Volume 33 - Issue 3 - p E10–E20
doi: 10.1097/JCN.0000000000000467
Feature Article/Online Only

Background: Although out-of-hospital cardiac arrest (OHCA) survivors’ physiological outcomes have been addressed, less is known on the holistic needs of individuals after OHCA, which hinders our ability to prioritize care around what really matters to survivors.

Aim: The aim of this study was to interpretatively synthesize qualitative findings on OHCA survivors’ perceptions and meanings of life and death and existential issues.

Methods: We used a meta-ethnographic synthesis of published qualitative studies addressing the experiences of OHCA survivors based on a systematic literature search (CINAHL, PsycINFO, Scopus, PubMed). Studies were selected based on predefined inclusion/exclusion criteria. The identified studies were subjected to a quality appraisal based on the Critical Appraisal Skills Programme.

Results: Based on eligibility criteria, 6 phenomenological studies were included, of overall medium to high quality. One core theme, “the reality of death,” and 4 main themes were identified: “redefining existence”; “revaluing death”; “being familiar with, yet oblivious of death”; and “living consciously.” Emerging from the realization of death, the themes appeared to describe a gradual progression toward living consciously.

Conclusions: An existential trajectory and a need for meaning are central in the experience of OHCA survivors. When existential issues are not addressed, the ongoing suffering may interfere with survivors’ recovery and quality of life. Future research needs to address specific needs and ways to support survivors’ meaning-making.

Maria Aristidou, MSc, RN Doctoral Candidate, Department of Nursing, School of Health Sciences, Cyprus University of Technology, Limassol, and Special Scientist, Department of Nursing, School of Health Sciences, European University of Cyprus.

Fotini Vouzavali, PhD, MSc, RN High School Teacher, Vocational High School of Nurse Assistants, and Laboratory Instructor, Department of Nursing, Technological Educational Institute of Athens, Greece.

Maria N. Karanikola, PhD, MSc, RN Assistant Professor, Department of Nursing, Cyprus University of Technology, Limassol.

Ekaterini Lambrinou, PhD, MSc, RN Associate Professor, Department of Nursing, Cyprus University of Technology, Limassol.

Elizabeth Papathanassoglou, PhD, MSc, RN Associate Professor, Faculty of Nursing, University of Alberta, Edmonton, Canada.

This work was supported by the Cyprus University of Technology Doctoral Program and a University of Alberta establishment grant to EDEP.

The authors have no conflicts of interest to disclose.

Correspondence Elizabeth Papathanassoglou, PhD, MSc, RN, Faculty of Nursing, University of Alberta, 4-130E Clinical Sciences Building, 11405-87th Ave, Edmonton, AB, Canada T6G 1C9 (papathan@ualberta.ca).

The prevalence of out-of-hospital cardiac arrest (OHCA) is increasing globally.1,2 For those who survive, complications may affect their quality of life and social and family roles.3–6 Although survivors’ physiological outcomes have been extensively addressed,7 less is known on the holistic needs of individuals after OHCA, which hinders the ability of healthcare professionals to prioritize care around what really matters to survivors. In a recent meta-synthesis, common themes of the lived experience of OHCA have been identified, including a whirlpool of emotions, physiological and psychological challenges, and confrontation with death.8 Being confronted with death is a potent experience that has been associated with existential suffering and profound life changes.9 Research on existential issues has been slowly emerging, primarily in palliative care10; however, existential issues have not been addressed in OHCA survivors. Recognizing the psychosocial and spiritual concerns of surviving OHCA is important in deciphering care priorities and in supporting survivors and families to live well after OHCA.

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Aim

The aim of this study was to interpretatively synthesize qualitative findings on OHCA survivors’ perceptions and meanings of life and death, with a special focus on existential issues, to gain a deep understanding of survivors’ perspectives and the way their meanings were affected. The insight gained may contribute to the heightening of healthcare professionals’ ability to recognize and address OCHA survivors’ needs in a holistic manner.

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Methodology

A meta-ethnographic method for qualitative data synthesis was used.11 To ensure completeness of reporting, we used the ENTREQ guidelines.12 ENTREQ provides a framework for explicit and comprehensive reporting of the steps involved in a meta-synthesis, therefore augmenting transparency on the rationale and approach for the screening and inclusion of studies. ENTREQ can function as a guide to enhance the completeness and consistency of all study procedures.12

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Search Method

Four electronic databases were searched (CINAHL, PsycINFO, Scopus, and PubMed from March 2014 to April 2017) in collaboration with a specialist librarian (search strategy: Appendix 1). Dissertations and theses archives were also searched (ProQuest). Titles, abstracts, and full texts were screened independently by 2 reviewers (M.A. and F.V.), and consensus was sought.

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Eligibility Criteria

Inclusion criteria were studies that (a) used qualitative methods to investigate the experience of patients surviving an OHCA and (b) recruited participants with OHCA in adulthood.

Exclusion criteria were (a) data not collected directly from OHCA survivors; (b) intervention studies, reviews, conference abstracts, or discussion papers or chapters; and (c) studies addressing specific symptoms and treatments (eg, implantable defibrillators) and not the entire experience of OHCA.

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Data Extraction

We extracted data on meanings and emotions regarding life, death, and existential issues from the “Results,” “Discussion,” and “Tables” sections of the reviewed studies. Physiological symptoms and needs for support were not extracted as per the aim of this study.

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Quality Appraisal Process

To assure credibility and rigor of the synthesis, the identified studies were appraised for methodological robustness and transparency of reporting and content through the Critical Appraisal Skills Programme (CASP)13 quality appraisal instrument. The CASP was applied independently by 3 investigators (M.A., F.V., and P.E.) who subsequently met to reach consensus. According to CASP, the methods, analysis, and interpretations of the reviewed studies are assessed, and reviewed studies are classified in either category A (low risk of type I or II error) or B (moderate risk of bias, mainly of type II).

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Data Analysis

A 7-stage analysis process was used as described by Noblit and Hare (Appendix 2).14 Four reviewers were involved in the analysis of the identified studies (M.A., F.V., E.P., and M.K.). Because published studies were focused on survivors’ experiences in general, the themes of the identified studies were reexamined under the lens of existential meaning-making; thus, the section of “Findings” of the reviewed studies was read and reread. Themes from each study and their interactions were systematically compared for shared themes and differences. Based on this, a list of common themes was created to form initial assumptions about relations among the reviewed studies in terms of common and recurring group of themes. Subsequently common key concepts across the reviewed studies were identified (first-order interpretation). Then, these key concepts (translations) were compared and further synthesized, and each researcher wrote a description of each group of key concepts. This procedure led to the 4 constructs presented in the middle column of Table 1; thus, a second level of synthesis was achieved.21 Further analysis and interpretation were performed to reach new interpretations regarding the association between the second-order analysis concepts, and a core theme was formed (third-order analysis).22

TABLE 1

TABLE 1

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Findings

A flow diagram of the search results appears in Figure 1. Selection was focused on first-hand experiences of OHCA; therefore, studies exploring experiences related to implantable cardioverter defibrillators and specific health complications were excluded (Figure 1). A total of 56 OHCA survivors (45 men), aged between 24 and 76 years, were included. One core theme, “the reality of death,” and 4 main themes were identified. Emerging from the realization of death, the themes appeared to describe a gradual progression toward living consciously (Figure 2). The results of second- and third-order analyses appear in Tables 1 and 2.

TABLE 2

TABLE 2

FIGURE 1

FIGURE 1

FIGURE 2

FIGURE 2

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Quality Appraisal

One of the 6 studies was rated as medium quality; and the rest, as high quality (Table 3). Overall, the studies exhibited satisfactory methodological rigor, while all of them included in-depth interpretations and discussion (CASP category A) (Summary of studies in Table 4).

TABLE 3

TABLE 3

TABLE 4

TABLE 4

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Core Theme: The Reality of Death

Participants described a shocking realization not only of the actuality of death but also of the continuity of death, reflected in the way the experience of OHCA was enduringly affecting their life. The experience of death appeared to stay with them. Death was not a past occurrence; it was an ongoing, evolving process.

[SCD] is something that follows you around, it is there, and just can’t be ignored.18

This is not over, it has just begun.17

The reality of death formed the basis on which the rest of the themes were grounded:

Death is not just a possibility; it is a reality that I have already experienced.18

Rather, than a possibility mainly experienced in “others’ death,”23 survivors perceived death as personal and actual. Rather than remote, the possibility of death was omnipresent:

I wake up in the morning and I can’t help but think about it [sudden cardiac death]… it has become just one more thing…in life.18

The ever-present possibility of death was also presented as an ordeal, a trial that the person has to overcome:

…I force myself [to face it], I force myself; otherwise…I would be…a prisoner of my condition….18

This experience was so profound and unique that separated them from the rest of the world:

…I literally died and came back. Who can begin to grasp such a thing?…18

This deep realization of the role and continuing presence of death in their life appeared to shape their lived experience and to permeate their meanings.

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Main Themes

Redefining Existence

Existential issues were ample throughout the narratives and interpretation in all studies. Existential questions, search for meaning and hope and the need to redefine themselves, were recurring in survivors’ narratives. Out-of-hospital cardiac arrest appeared to be an existential experience in itself regarded with awe and surprise. The reality of having one’s existence interrupted was incomprehensible:

…I can’t imagine myself as being gone [dead] at any time!19

Experiences of vulnerability gave rise to intense emotional distress and might prompt an existential quest:

[…] there are some days when anxiety attacks me… […] because many things run through one’s mind regarding life and one’s existence.17

Existential questions denoted survivors’ struggle to construct and recover meaning. Survivors’ sense of well-being appeared to greatly depend on the construction of meaning:

Why me…? Why did this happen to me?… Why was I saved then?… How will it go on?19

Finding meaning was important in continuing survival, whereas absence of meaning created suffering. Meaning was often recovered through reorienting the focus of their lives to the present and to the people they loved and by letting go of their previous ways and need of control:

The future?… Take one day at a time…just that […].15

Redefining their identity was part of survivors’ existential quest and played an important role in recovering meaning. Redefining their identity included both physical, and psychological and relational aspects. Accepting the newly physical and cognitive limitations was an important step in going on with life:

[…] I don’t need to do everything at once, straightaway. Just because that pile [of work] is there, it doesn’t matter if it takes all day to finish.15

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Revaluing Death

Many participants perceived having experienced death at least at an affective level because they were able to describe their impressions and emotions. Death was mostly portrayed as peaceful and as a place rather than an occurrence:

It was extremely peaceful. It was very - very serene. It was very - very bright.20

The narratives appeared to purposely contradict the common perception of death as painful and frightening:

It was not a dark place to be afraid of.15

…had it continued for another 5 min, I would not have wanted to come back.20

The narratives also reveal some extrasensory experiences occurring around the time of OHCA, although not common:

…[I said] “Mom, Dad, I really wish you were here.” And they were both deceased. And they showed up. It was very comforting.20

Participants appeared rather fascinated than afraid of death. In the identified studies, there were no negative descriptions of the experience of cardiac arrest itself. Of the 7 identified studies, in 3 studies, participants specifically reported that they were no longer afraid of death as a result of OHCA, and in 2 studies, there was no mention to death anxiety, whereas in 2 studies, fear of reoccurrence of the cardiac arrest, but not of death itself, was reported. However, although no longer feared, rather than desired, death was an incentive for living.

Do I fear death? No. Do I look forward to it? Not necessarily.20

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Being Familiar With Yet Oblivious of Death

Although perceived as part of their experience, death remained elusive. For several participants, the cardiac arrest itself appeared unrecorded in memory. Cardiac death, the discontinuation of life, seemed to have produced a blank memory, a state of oblivion. In this blank, the perception of time was distorted—time appeared to have sped up:

The greatest impact of this [the arrest] was that it destroyed my memory.17

…As if it all went by really fast….17

Emerging from a blankness of memory, the immediate postarrest experience was perceived as chaotic.

I remember them…on the third so to speak. How is she? Who else are, so to speak, in this…chaos, er? ….19

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Revaluing Life: Living Consciously

A heightened appreciation for life was described as a consequence of OHCA, as well as a need to reconceptualize life through the possibility of death.

…and the only thing you get from what happened [to you] is that you learn to live….18

Death was viewed as having opened up a new, more fulfilling way of existence. The realization of death seemed necessary to comprehend life.

…and it seems incredible that something like this had to happen to open my eyes…to life.18

…you could say I’m living another life…. It’s much…more fun to live nowadays than [laughter] before….19

As death was perceived as an actuality, planning for the future seemed irrelevant, and life focused on the present, whereas priorities changed:

[…] I don’t have any advanced plans. I’ll pick berries and fish…things I enjoy.15

Life and living were no longer taken for granted. After OHCA, one cannot carry on in life like before. Survivors realized that the art of living was a skill they had to develop and that living was no longer separate from dying. In the quote hereinafter, living and dying appear to be conscious acts, which are intertwined and require knowledge. Survivors deliberately pursued a fulfilling existence despite, and/or because of, the conscious understanding of the impending ending of their life.

One has to learn to live again, one has to learn to die…and suddenly you find yourself having to learn to live, knowing that your life may end any time.18

However, before mastering a meaningful life, survivors had to first achieve some normalcy in their everyday living, which might be especially challenging in view of physiological, psychological, and cognitive impairments:

[…], you have to try to get back to normal, get the strength to get everyday life to work out first.16

Reviewing their past lives and habits appeared to be part of their conscious effort to live meaningfully. Human relationships and family acquired a heightened meaning:

You are not striving to own this or that.17

I have filtered out those whom I think are a waste to spend time with…. I try to focus on those close to me….17

To live was portrayed as an almost conscious decision. This decision was linked to feelings of awe and gratitude for their survival:

When you realize that in fact you died […] and there were […] so many people who made great efforts…then of course you are obligated to continue living. There is no other option.17

This decision also seemed to regard merely the people they cared for, rather than themselves:

It wouldn’t have mattered if I had died, it wouldn’t have been anything dramatic or […], but for my relatives….16

[….] it was my fault, letting them be so worried. You feel such guilt, a terrible guilt, what have I put them through?16

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Discussion

Through this meta-synthesis, we sought to synthesize evidence on the meaning-making process of survivors of OHCA. The central finding was survivors’ existential trajectory, which seemed to originate from the profound realization of the reality of death and to unfold through the processes of existential suffering, seeking of meaning, revaluing death and life, and living consciously.

Encountering life-threatening danger can permanently and dramatically change beliefs and values and lead to positive or negative personal transformations.9,24–26Although, in the identified studies, investigators did not specifically address existential issues, such themes were diffuse throughout the narratives and interpretations. Existential issues are difficult to be explored and hard to be articulated. Oftentimes, existential issues are equated to spirituality and religiosity, which may be “nontopics” for many.27 In recent years, there has been an increasing research interest in the existential needs of individuals facing acute and chronic diseases, especially in oncology and palliative care.28 Nonetheless, such exploration in survivors of cardiac arrest is very scant. Recent studies suggest the existential impact of heart failure and cardiac disease,29 as well as the role of addressing existential questions in coping and well-being.30,31 The themes identified by Leeming et al29 in heart failure patients bear many similarities, and yet some noteworthy differences, with our findings. Worries about role identities are evident in both sets of narratives; however, although heart failure patients expressed worries about the end of life, OHCA survivors overall appeared to be more reconciled with the notion of death and to have progressed in reconceptualizing their priorities and meanings. Moreover, although heart failure patients seemed to experience social isolation, OHCA survivors attested to a renewed sense of relatedness and finding meaning through important relationships. If confirmed by future investigations, these differences are important to be taken into account when addressing the holistic needs of individuals with different types of heart disease. In OHCA survivors, the profound lived experience of the presence of death may push them to a distinct trajectory, with needs and meanings different than those of other cardiac patients.

The quest for meaning, the increased relatedness with others, and decreased fear of death are in accordance with quantitative findings in a sample of individuals with near-death experiences (NDEs) during cardiac arrest.32 Despite evidence of NDE in cardiac arrest, only scarce references to such experiences were included in the synthesized studies. However, the reported feelings of serenity and bliss resemble the effect of NDEs.33 Moreover, the positive views on death and heightened joy of life are commensurate with qualitative findings in survivors of critical illness34,35 and in individuals with life-threatening diseases.36 Conversely, the theme of conscious living has not been described previously. Living consciously has similarities to Heidegger’s37 concept of authentic life, which is achieved when one is confronted with the possibility of one’s own death. Likewise, survivors’ concern for the effect of their cardiac arrest on others is in accordance with the Heideggerian notion of “authentic care,” which signifies having others being part of one’s world.37 Overall, these narratives allude to the Heideggerian authenticity, as an existential modification of the manner of being present by beginning to care for the meaning of existence.38

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Limitations

As any meta-synthesis, this study was limited by the quality and scope of the studies included. In addition, we tackled types of questions that were not the primary focus of the identified studies. Although methodologically acceptable, this might have introduced additional bias. In 3 studies, some interviews were carried out in conjunction with the interviewee’s spouse who might have influenced the narrative. Most participants in this meta-synthesis were male, possibly introducing gender bias.

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Conclusion and Implications

This meta-synthesis highlighted an existential trajectory and a need for meaning as central in the experience of OHCA survivors. Out-of-hospital cardiac arrest survivors face a number of physiological and cognitive disabilities, as well as difficulties in psychological adjustment. Future research needs to address the effects of addressing existential issues on survivors’ recovery and quality of life,25 as well as the specific needs and ways to support survivors’ meaning-making.

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What’s New and Important

  • Although physiological symptoms and needs for support in OHCA survivors have been addressed, less attention has been given to survivors’ existential issues and meaning-making.
  • This meta-synthesis of qualitative studies highlights the “reality of death” as the core and differentiating theme of OHCA survivors’ experience.
  • Emerging from the realization of death, the themes embedded in the narratives appear to describe a gradual progression toward living consciously.
  • An existential quest and a need for meaning are central in the experience of OHCA survivors.
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APPENDIX 1 Search Study and Database Year Coverage

(CINAHL, searchable years 1973–2016; PubMed, searchable years 1970–2016; PsycINFO, 1956–2016; and Scopus, searchable years 1970–2016).

We searched with a number of alternative terms for subject (cardiac arrest OR sudden cardiac death OR heart attack OR out of hospital cardiac arrest OR premature death) in combination with the terms “patients” OR “survivors” for the body of text additionally combined with a number of alternative terms to identify articles on patients’ experiences (experiences OR attitudes OR perspectives OR meanings OR adjustment) and qualitative studies (Qualitative OR interview* OR Phenomenolog* OR Hermeneutic OR IRA or interpretative phenomenological analysis OR focus group OR grounded theory OR narrative OR Discourse Analysis OR Thematic Analysis OR Content Analysis OR Ethnograph*).

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APPENDIX 2 The Seven Stages of Noblit and Hare’s11 Meta-ethnography Approach

  1. Determining the research question that could be informed by qualitative research.
  2. Deciding what is relevant to the initial interest which involves an exhaustive search and selection of relevant studies based on inclusion criteria and quality assessment.
  3. Studying carefully the data of relevant articles several times to grasp the overall meaning of each of them38 ; becoming familiar with the content and details in order to identify and extract “metaphors” or themes.
  4. Determining how the studies are related including the creation of a list of common themes or metaphors from each of the selected studies, juxtaposing them, in order to have initial assumptions about relations between studies (first order interpretation).
  5. Translating the studies into one another, by studying the process through which data were synthesized. Concepts or themes from each study and their interactions are continuously and systematically compared or translate within each other (second order analysis).
  6. Synthesizing translations involving a second level of synthesis, in the presence of many translations from stage five. These translations can be compared with one another for common types of translation or concepts. Further analysis, interpretation and translations can be possible to reach new interpretations/conceptual understanding (third order analysis).
  7. Expressing the synthesis or communicating with the audience writing the synthesis according to the audience’s culture and language so that it is intelligible and useful to them.
Keywords:

death; existential suffering; meta-ethnography; out-of-hospital cardiac arrest; systematic review

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