Abstract
Background:
Spiritual distress among family members of patients in the intensive care unit (ICU) has not been well characterized. This limits clinicians' understanding of how to best offer support.
Objective:
To explore how family members experience spiritual distress, and how it is recognized and support offered within the ICU context.
Design:
A qualitative study involving interviews and focus groups between May 2016 and April 2017.
Setting/Subjects:
Family members of ICU patients (nâ=â18), spiritual health practitioners (nâ=â10), and an interprofessional group of clinicians who work in the ICU (nâ=â32).
Measurements:
Transcribed data were analyzed using interpretive description.
Results:
The experience of spiritual distress was variably described by all three groups through concepts, modulators, expressions and manifestations, and ways in which spiritual distress was addressed. Concepts included loss of meaning, purpose and connection, tension in beliefs, and interconnected distress. Modulators were related to the patient and family context, the ICU context, and the relational context. Expressions and manifestations were unique and individual, involving verbal expressions of thoughts and emotions, as well as behavioral manifestations of coping. Clinical strategies for addressing spiritual distress were described through general principles, specific strategies for discussing spiritual distress, and ways in which spiritual support can be offered.
Conclusions:
Our study provides a rich description of how spiritual distress is experienced by family members of ICU patients, and how spiritual health practitioners and clinicians recognize spiritual distress and offer support. These findings will help inform clinician education and initiatives to better support families of critically ill patients.
Introduction
Critical illness requiring care within an intensive care unit (ICU) is extremely stressful for both patients and their families. The emotional distress associated with multiple difficult conversations about diagnoses, treatment options, prognosis, and decision making, as well as the uncertain trajectory of critical illness and deviation from everyday life significantly impact family members' physical, social, and psychological health.1â3 This impact has been well documented in the literature, as has the importance of spiritual care for patients facing serious medical conditions.4,5 Yet, there has been little attention to spiritual distress among family members of patients in the ICU. 5
Spiritual distress has been described as a state of suffering related to the impaired ability to experience meaning in life through connectedness with self, others, the world, or a higher being.6,7 How spiritual distress is expressed in family members of ICU patients has not been well-characterized. While quantitative studies have reported on chaplains' or spiritual health practitioners' activities in providing spiritual support,8â10 rich descriptions of the nature and impact of these interventions is currently lacking. Knowing how to assess for spiritual distress and what spiritual support involves would help clinicians identify family members who might benefit from spiritual care and more effectively address their needs, whether through spiritual support from members of the interprofessional team or through consultation with a spiritual health practitioner.
The purpose of this study was to explore the experience of spiritual distress among family members of patients in the ICU, understand how spiritual distress can be recognized, and identify sources of spiritual support.
Methods
Design
This was a qualitative study applying interpretive description to understand the experience of spiritual distress among family members of ICU patients.
Participants and setting
Three groups of participants were includedâfamily members, spiritual health practitioners with ICU experience, and clinicians working in the ICU, including nurses, physicians, respiratory therapists, social workers, and indigenous health liaison specialists. Family members of patients who had been discharged from nine teaching ICUs located in two large cities in Alberta, Canada (respective populations âź1.2 million) three to six months before study recruitment were sent a letter of invitation to participate (nâ=â414). Information about the study was also posted in three nonteaching ICUs located in three smaller cities in Southern Alberta (respective populations âź60,000â100,000). Spiritual health practitioners (nâ=â18) and clinicians (nâ=â451) from these cities were invited to participate via email notices.
Data collection
Semistructured individual interviews and focus groups (four to eight participants per group) of 30â60 minutes were conducted by a trained research associate (K.G.-M.). Most interviews and focus groups were conducted between May and September 2016, with an additional clinician focus group in April 2017 to achieve theoretical saturation of themes. Interview questions inquired about participants' understanding of spiritual distress as a concept, how spiritual distress is experienced by and identified in family members, and how spiritual support is offered to family members (Appendix A1). All participants provided informed consent.
Data collection and analysis occurred concurrently, and the interview guide was iteratively modified to further explore emerging themes. Participant preference for an interview or focus group was respected. Separate focus groups were held for family members, spiritual health practitioners, and clinicians. Interviews and focus groups were audiorecorded and professionally transcribed.
Data analysis
Data were analyzed by three members of the research team (A.L.R., K.G.-M., J.S.), using interpretive description. 11 We chose interpretive description as this methodology acknowledges the multiple contextual realities and common patterns of experience within the clinical setting, and focuses on developing knowledge that will directly inform clinical practice.
Analysis began by independent close reading of transcripts, followed by independent inductive coding using ATLAS.ti software for data management. Each transcript was coded in duplicate; researchers met after coding every two to four transcripts to negotiate codes and develop a coding scheme. The data from the three groups (family members, spiritual health practitioners, and clinicians) were analyzed separately due to differences in experience and perspective between these groups documented in the literature.4,12â16 Constant comparison 11 was used to compare and contrast emerging themes with previously analyzed data, and new data were integrated into the coding scheme. From the codes and memos written during data collection and analysis, themes were developed to reflect evolving meaning within the data, and the relationship between themes was explored. Similarities and differences between the three groups were identified. Themes were further deliberated and refined through discussion with the larger research team (S.S., H.T.S., T.S.).
Reflexivity
As a research team, we acknowledge the theoretical and practical knowledge we bring to this work and its influence on our research. While not possible to eradicate bias, our clinical and research experience brought an awareness of nuances that may have gone unnoticed by a strictly outside observer. Our multiplicity of backgrounds and clinical experience allowed for triangulation of perspectives and the cocreation of meaning between researchers and participants throughout data analysis and interpretation. The study was approved by the Institutional Research Ethics Board.
Results
Participants included 18 family members (10 individual interviews, 1 focus group); 10 spiritual health practitioners (3 individual interviews, 2 focus groups); and 32 clinicians (13 individual interviews, 3 focus groups), including 18 nurses, 6 physicians, 4 respiratory therapists, 2 social workers, and 2 indigenous health liaison specialists. Participant demographics are described in Table 1.
Demographic Information
One participant indicated more than one category.
ICU, intensive care unit; IQR, interquartile range.
Four themes encapsulated the experience of spiritual distress among family members of ICU patients: concepts, modulators, expressions and manifestations, and addressing spiritual distress. These themes were identified across each of the three groups and the subthemes between groups were largely similar, with some notable, yet, subtle variance highlighted below. A number of subthemes were also identified, and these are indicated in italics in the text below along with illustrative quotations. Additional quotations are provided in Appendix A2.
Concepts of spiritual distress
Family members, clinicians, and spiritual health practitioners all described spiritual distress to varying degrees as suffering related to a loss of meaning, purpose, and connection âin relationship with one's self, with others, and whatever is understood as transcendent for the person.â (Spiritual health practitioner [S] 2)
Family members and spiritual health practitioners described a tension in a person's belief system, grappling with preexisting beliefs about illness, life, death, religion, and spirituality, where âYou start to question the core of your beliefs, the core of your being.â (Family member [F] 6) Clinicians suggested that family experiences of spiritual distress may relate to an inability to understand the meaning or purpose of events leading up to and occurring within the ICU, and family members described the associated fear of the unknown. Spiritual health practitioners emphasized that spiritual distress is broader than religious concerns, and considered spiritual distress as a universal experience among hospitalized patients and their families.
Both spiritual health practitioners and clinicians noted the interconnected nature of distress, where different kinds of distress (e.g., spiritual, emotional, social, moral, physical) are âall connected to each other in that one structure of what we call a human experienceâ (S4), and cannot be compartmentalized into distinct domains of health.
Other clinicians and family members had an inability to describe the meaning of the term âspiritual distressâ which for them was an individually defined experience that defies language.
Modulators of spiritual distress
A number of factors modulated the experience of spiritual distress among family members, related to patient and family context, ICU context, and relational challenges.
Patient and family context
Family members identified that past experiences with health care and with death and dying could ameliorate or exacerbate spiritual distress. For example, âFamily members were very much distressed with the fact that healthcare providers were saying this was the end when they felt that because God had saved them once that He would save them again.â (Clinician [C] 8)
Current circumstances contributing to spiritual distress related to precipitants of illness, patient characteristics such as age or having young children, and clinical events.
Family members' belief systems also modified their experience of spiritual distress. Beliefs that helped the family make sense of what was happening reduced their sense of distress: âDad was also at peace that day. He did not appear to be stressed about the fact that this is his last day. He seemed to be in so much spiritual peace that it was easier to say goodbye to himâŚâ (F12) Conversely, clinicians noted that a family's belief system could also contribute to spiritual distress, for example, in waiting for a miracle that was not happening or avoidance of contemplating the possibility of death.
Change and loss related to the acuity and severity of the patient's illness further contributed to spiritual distress, with participants across each cohort noting that spiritual distress could happen at any time during a patient's ICU stay, and was not confined to the end of life. Clinicians anticipated spiritual distress in families when the patient was dying, whereas family members suggested spiritual distress at the end of life was more related to the circumstances, for example, whether they perceived the patient to be suffering.
Having responsibility for advocacy and decision making about care also leads to significant spiritual distress in families as âthey have to live with that decision for the rest of their lives and there's always that in the back of their mind, âWhat if? What if?⌠That existential piece.â (S3) There was a perception among clinicians that spiritual distress in families was less when patients were sufficiently alert to make decisions for themselves.
ICU context
Uncertainty and lack of control related to the nature of critical illness and ICU care was identified across all three groups as a potential contributor to family members' spiritual distress. âIt's just the lack of understandingâŚmostly just terrifying, you don't, I mean it's the unknown.â (F1)
Clinician actions and inactions also modulated spiritual distress. For example, families indicated that their spiritual distress increased when their beliefs were not respected and when they did not feel heard. Conversely, they reported experiencing less spiritual distress when they felt the patient and themselves were being treated like persons, and the medical concerns were being addressed in a competent and comprehensive way.
The physical environment was identified as further contributing to or alleviating spiritual distress. Technology and equipment were described by some families as being initially frightening and intimidating, compounding their sense of urgency and acuity of the situation. Over time, as family members grew accustomed to the environment, participants found that the close monitoring and individualized nursing care provided a sense of safety and security.
Relational context
The degree of trust between family members and the clinical team had an impact on families' willingness to discuss their spiritual distress, as âI'm not going to lay myself open and bare towards someone who's going to tromp on it and disrespect it.â (F7)
Clinicians believed that communication gaps between clinicians and family members exacerbated families' spiritual distress. For example, their spiritual distress increased when clinicians did not take the time or were not transparent about the patient's condition and plan of care, or when families felt inhibited from talking with clinicians about the patient's wishes.
Conflict, whether between clinicians and family members or within a family was another source of spiritual distress; this conflict was often related to goals of care decision making or different religious belief systems within a family, respectively.
Expressions and manifestations of spiritual distress
All participants recognized that family members expressed spiritual distress in unique and individual ways that varied over time, conveyed through voiced thoughts and emotions, and through behaviors. Spiritual health practitioners and a nurse cautioned that expressions could be manifestations of spiritual distress, spiritual coping, or other types of distress, recommending that health care team members be mindful to avoid assumptions and instead explore families' experiences on their own terms.
Verbal expressions of spiritual distress included thoughts and emotions. Expressions reflected guilt and regret related to events or relationships, as well as questioning previously held beliefs, or asking existential questions about the meaning of events, or of life and death itself, often with a sense of injustice. âThey start asking the âwhyâ questions and not the science-based kind of medical questions⌠âWhat did she do to deserve this? How could I have prevented this? Had I gotten there sooner.ââ (C2)
Some family members expressed feeling vulnerable or overwhelmed and unable to process information. All groups noted families could have a narrowed perspective and focus questioning on what they considered to be the most pressing issue. Other family members were emotionally expressive, showing sadness and lamenting the loss of the person they once knew. Still others expressed fear or anger related to the patient's condition and care, and strongly advocated or argued with clinicians. Additional expressions of spiritual distress included feeling demoralized, alone and in despair. A family member spoke of her spiritual distress in ICU manifesting as âI fall apart⌠I cry a lot and I despair this loss.â (F7) Other family members turned inwards and were silent, appearing numb and when âyou look at them it's just like a void or this sort of shock face.â (C6) Psychosomatic symptoms were occasionally expressed, such as âan ache all over my body, all over physical pain.â (S2)
Coping behaviors that family members adopted to manage spiritual distress were also mentioned, many of which were distributed along a spectrum of maladaptive to adaptive. These included withdrawing âto just go through it aloneâ (F3)/seeking connection and support; avoiding and âchoos[ing] to stay awayâ (S1)/participating/controlling; denial âthat this was as serious as it wasâ (F6)/seeking information in asking âa lotta questionsâ (S6) and âthen get on the internet and research stuffâ (F6); self-neglect in being âat the bedside, she's there 24/7â (C9)/self-care; hopelessness/maintaining hope âso I just kept holding his hand and I was telling him âI'm here, don't worry, I'm here, we'll be okay âcause we're here togetherââ (F6); and spiritual and religious practices. One family member explained that âYou hope that your religious beliefs and praying will help the outcome of what's going to happen⌠It's the only thing that you yourself can do, because you're not a medical person, right, so you can't do anything medically to, um, affect the outcome.â (F8)
Addressing spiritual distress: clinical strategies
Participants discussed general principles of addressing spiritual distress in families, as well as specific strategies for conversations about spiritual distress and offering support.
General Principles of Addressing Spiritual Distress
Clinicians and spiritual health practitioners spoke to the importance of anticipating spiritual distress and routinely and proactively integrating conversations about spirituality and spiritual distress into usual care, as âThere's spiritual distress for every single person who comes in, even when it's not named.â (S7) An interprofessional team approach in approaching spiritual distress was emphasized. The need to establish rapport was highlighted by all three groups. To build rapport, clinicians asked general questions about the patient and family, and how the family were feeling and coping. Allowing the family time and space to absorb information and adjust to a new reality rather than forcing decisions contributed to trust. Open-mindedness to different perspectives, speaking in a way that was sensitive to families' beliefs, and respect for spiritual diversity were additional principles described as essential when addressing spiritual distress. As spoken by a nurse, âSuspend that judgment and respect their wishes, respect their culture, respect their religion, and really kind of checking your own attitudes at the door.â (C19) Remembering that family behaviors in the ICU context may reflect situational coping helped clinicians sustain these principles. Active listening also facilitated understanding of the family's perspectives and experience.
Spiritual health practitioners expressed that how they initially introduced themselves to families impacted receptivity; many introduced themselves simply as a member of the health care team representing holistic care, and whose primary role is to listen and offer support in whichever way would be of benefit. They spoke to the tenet of adopting a nonscripted approach and responding in the moment, with attunement to both the family and their own clinical gestalt and intuition, developed through experience, close observation, deep reflection, and self-awareness. Family members highlighted the importance of attending to both the patient and family while at the same time considering their spiritual needs separately and balancing these needs while individualizing care.
Discussing spiritual distress
While building rapport during initial conversations, clinicians looked for indicators that the family may be experiencing spiritual distress. If the family did not mention spirituality or religion in early clinical narratives, clinicians and spiritual health practitioners initiated conversations in a more direct way through open-ended questions, such as âask[ing] if they have a religious background or identify with a religious group⌠what their spirituality looks like and how they view what's happening through the lens of their spirituality.â (C8)
While clinicians often described a less direct approach of building rapport and then asking âIs there any spiritual practices you would like us to honorâ or âWould you like any support from a spiritual point of view?â (C3), spiritual health practitioners more intentionally introduced the topic of spiritual distress and spent more time exploring family members' experiences, facilitated emotional expression, and initiated conversations about values, goals, meaning, and purpose. Through these conversations, they identified sources of spiritual strength in difficult times and support needs.
Offering spiritual support
Spiritual health practitioners emphasized the importance of a holistic approach that acknowledges the family members' full experience of distress (e.g., spiritual, emotional, social, moral, physical) rather than focusing on a single element. Clinicians and spiritual health practitioners described responding to spiritual distress through presence and acknowledging, validating, and at times normalizing the distress as a common experience for family members. At times, this involved âBeing willing and able to be with people in their suffering without trying to change it or fix it.â (S2)
Spiritual support also involved empowering families. Family members indicated that balancing active support with allowing an emotional and reflective space without imposing pressure to make decisions was important. All three groups perceived that as misunderstanding and responsibility for decision making can contribute to spiritual distress, part of empowering families involved sharing information in honest ways and involving the family in patient care. Other aspects of empowerment involved encouraging adaptive coping skills such as self-care and âIdentifying support systems within the family and then external support systems within their religious community⌠encouraging them to seek guidance and support within their own immediate circle.â (C25)
Another form of support was guiding families. In guiding, spiritual health practitioners shared insights and fostering hope related to specific goals; both spiritual health practitioners and clinicians provided decision-making support. Spiritual health practitioners described supporting family members by helping them achieve a sense of meaning and purpose, and finding ways to integrate change and loss. Specific techniques included reminiscence, legacy-building, and facilitating ritual âfor the family that's there, someone offering a prayer of healing and hope makes a difference for them.â (S6) They also used metaphors to reframe and reorient families as a way of facilitating acceptance and helping them find a new equilibrium and sense of control. Family members spoke of how care and compassion shown by any member of the health care team could be a form of spiritual support.
F18: Well we thought we were receiving spiritual comfort [from the ICU clinicians] there, you know, so there wasn't really any need [for a spiritual health practitioner]. From theirâŚ
F15: Just human interactions and human compassion and that is spiritual support right there, right?
Discussion
We have described experiences of spiritual distress among family members of ICU patients from the perspective of family members, clinicians, and spiritual health practitioners, including concepts of spiritual distress, modulators, expressions, and manifestations, how spiritual distress is addressed, and support for family experiencing spiritual distress.
Several family members and clinicians had difficulty articulating what spiritual distress meant to them. This has also been identified in other studies.17,18 Other family members and clinicians, as well as spiritual health practitioners, described an intrinsic element to spiritual distress. While spiritual distress is often portrayed in the literature as an external stress or as conflict between others' and personal beliefs, our research highlights that spiritual distress can manifest as internal conflict from personal questioning of intrinsic beliefs that previously provided comfort and went unexamined.
The amorphous nature of spirituality and spiritual distress presents a challenge to clinicians and family members alikeâclinicians are challenged in addressing the spiritual domain within their clinical interactions, and families are challenged in finding language through which to express spiritual concerns in response to direct questions about this domain of health. While there is consensus on the importance of addressing spiritual needs, clinicians currently have limited clinical resources to help them in this endeavor. A practical guide may be of benefit, and further research to develop and implement such a guide is imperative.
We identified a number of expressions and manifestations of spiritual distress. The verbal expressions, behaviors, and emotions described in our study have similarly been described in the literature on psychological distress in family members of ICU patients 19 and may therefore be nonspecific indicators of any one or a combination of types of distress. Noticing these signs should therefore encourage clinicians and spiritual health practitioners to engage with the family and further explore the nature of their distress, rather than making assumptions about the meaning of expressed thoughts and observed behaviors and emotions.
The modulators identified in our study highlight how clinician behaviors can contribute to or lessen the spiritual distress experienced by family members. Clinician actions and inactions have the potential to be therapeutic or cause iatrogenic suffering 20 ; attention to the behaviors reported in our study may help lessen the possibility of further contributing to family members' suffering and help them feel better understood, cared for and valued. For example, exploring and respecting spiritual beliefs can help build the rapport and trust needed for difficult conversations around diagnosis, prognosis, and decision making.
Clinicians in our study readily identified end-of-life situations as a modulator of spiritual distress in family members of ICU patients and felt compelled to offer spiritual care consultation at these times, a tendency also noted in previous research.8,21,22 In obtaining the perspectives of family members and spiritual health practitioners, our study provides a broader notion of when spiritual distress might be anticipated. Spiritual distress in family members was identified at many time points, particularly around transitions, including ICU admission, discharge, and decision making about goals of care. With critically ill patients frequently unable to speak for themselves, families are increasingly asked to make decisions on patients' behalf, and spirituality has previously been shown to impact surrogate decision making. 23 Consideration of spiritual distress in family members along the trajectory of the patient's stay in ICU will be important in implementing guidelines for family-centered care in the ICU, 24 and may help remind clinicians that spiritual health practitioners are a valuable source of family support beyond end-of-life contexts.
While we described a number of specific ways of addressing spiritual distress, the basic principles align with well-characterized approaches to building rapport 25 and models of compassion,26,27 where establishing a therapeutic relationship is foundational to talking about spiritual distress and helping families feel supported spiritually. One of the main barriers to spiritual care in acute care settings is clinician lack of confidence and training in assessing and offering spiritual care.14,28,29 Family members in our study perceived that they were receiving spiritual support from clinicians through the therapeutic relationships established at the bedside, emphasizing that clinicians without specific spiritual care training can offer spiritual support by engaging families with compassion.
Strengths of our study include cross-sectional representation from family members, spiritual health practitioners, and an interprofessional group of ICU clinicians, allowing triangulation of multiple perspectives. In addition, our work was embedded within clinical practice and incorporated the perspectives of those directly impacted by spiritual distress, in contrast to much of the literature which is theoretical. Our study also has limitations. First, a smaller number of family members participated relative to health care professionals, which may have resulted in findings that emphasize health care professional perspectives. Second, the study was conducted within an urban hospital network in Western Canada; the findings may not be transferable to other settings. Findings were also based on personal perspectives of participants with an interest in the topic and may not reflect actual behavior in clinical settings. Finally, the focus of this article was on family member experiences; future work will describe the reciprocal impact on health care professionals.
Conclusions
In summary, we have described experiences and modulators of spiritual distress among family members of patients in the ICU, along with expressions of spiritual distress, and what spiritual support looks like in this context. Our findings will be helpful to ICUs seeking to design spiritual care educational resources for clinicians; future research into the development and implementation of such resources is warranted. Recognizing that clinician actions can directly influence spiritual distress in patients' family members and that therapeutic relationships can help mitigate spiritual distress has important implications. Empowering clinicians to offer basic spiritual support and identify when families could benefit from the additional support of spiritual health practitioners along the trajectory of a patient's stay in ICU will be important in implementing guidelines for patient and family-centered care.
Funding Information
This study was funded by the M.S.I. Foundation (Grant #884).
Footnotes
Author Disclosure Statement
No competing financial interests exist.
The views expressed in the article are those of the authors and are not an official position of the institution or funder.
