May 2020 Articles of the Month
by John Ehman, Editor, ACPE Research Article-of-the-Month
and Manager for Pastoral Care, Penn Presbyterian Medical Center, Philadelphia PA
Roze des Ordons, A. L., Stelfox, H. T., Grindrod-Millar, K., Sinuff, T., Smiechowski, J. and Sinclair, S. "Challenges and enablers of spiritual care for family members of patients in the intensive care unit." Journal of Pastoral Care and Counseling 74, no. 1 (March 2020): 12-21.
Selman, L. E., Chao, D., Sowden, R., Marshall, S., Chamberlain, C. and Koffman, J. "Bereavement support on the frontline of COVID-19: recommendations for hospital clinicians." Journal of Pain and Symptom Management (2020): online ahead of print in a pre-proof form, 5/3/20. [NOTE: Because this article is available ahead of print only in a pre-proof form, no final page numbers can be cited, and references below are to the pre-proof manuscript.]
SUMMARY and COMMENT: Two Articles-of-the-Month have been selected for May: the first is a traditional selection about chaplaincy practice, but the second one is a pre-proof article from the latest in the developing stream of publications specifically about COVID-19. This should give professional chaplains and CPE programs a choice for discussion.
Our first article, "Challenges and Enablers...," presents a slice of chaplaincy practice in Alberta, Canada, in 2017-2018, identifying factors that facilitate or hinder the spiritual care of families in the ICU. This research, part of a larger study about spiritual distress of ICU family members, involved 60 participants in semi-structured interviews and focus groups: 18 family members, 10 spiritual health practitioners, and 32 clinicians, with separate focus groups for each of the three participant categories. The authors mark this as an understudied area and hope that "[t]riangulating the voices of spiritual health practitioners, family members, and ICU clinicians...provide[s] unique insights on how their different perspectives may contribute to the gaps identified, setting the groundwork for interventions to bridge these gaps and improve spiritual support within critical care settings" [p. 18]; including "help[ing] inform effective ways of embedding spiritual support within critical care contexts" [p. 13]. Moreover, the themes that surfaced here may be useful today as chaplaincy strategically negotiates the changing landscape of healthcare in the wake of the COVID-19 pandemic.
Results indicated six themes of challenges to providing spiritual care, plus three enabling factors.
- • Conceptual Confusion [pp. 13 and 15]
- "Many family members and clinicians held misconceptions around the term 'spiritual care,' conflating spirituality with religion or 'new age' practices...." They "were also unfamiliar with the term 'spiritual distress,'" and "family members struggled to formally identify spiritual distress as part of their ICU experience."
- • Role Confusion [pp. 15-16]
- "Several elements of role confusion were identified, related to scope of practice, misperceptions of spiritual health practitioners, and capacity confusion." "There were conflicting perspectives across participant groups about whose role it was to assess for spiritual distress and make referrals for spiritual care." "Family members held a misconception that spiritual health practitioners were denominational chaplains or ministers representing and espousing a narrowly subscribed faith tradition... [and clinicians] were not clear about how spiritual health practitioners delineated themselves from religious community leaders visiting congregants." "Clinicians' misconceptions about spiritual care limited referrals to spiritual care services for family support, whereas family members' misconceptions impeded their acceptance and ability to engage in the professional spiritual care being offered." "Among clinicians who were familiar with the concept of spiritual support, the idea of extending this support to family members was novel...." Also, "Family members and clinicians...associated spiritual health practitioners with end-of-life care...." Moreover, "[s]piritual health practitioners described clinicians acting as 'gatekeepers'" [p. 14]
- • Clinician Discomfort [pp. 16-17]
- "Clinicians commented that their lack of training and comfort in this domain negatively impacted their ability to address spiritual issue...." "A particular point of trepidation was appropriate language and a fear of offending or coming across as insensitive to family members' spirituality...." "Clinicians believed family members would be uncomfortable discussing spiritual distress with anyone other than spiritual health practitioners; this view was not corroborated by family members themselves, many of whom welcomed the idea of clinicians inquiring about their spiritual needs...."
- • Lack of Trust [p. 17]
- Trust issues arose from past experiences (and in the population sample from Alberta, this was "especially evident in discussions around spiritual support for indigenous families, where trust was a longstanding generational issue"); "shared spirituality or culture," when the connection to one's own community brought issues from that community; cultural assumptions "based on presumed religious affiliations"; and the sheer brevity of relationships between physicians and families.
- • Overly Biomedical Focus [p. 17]
- "Clinicians and spiritual health practitioners identified that a predominant focus on biomedical aspects in the ICU often overshadowed spiritual domains of care," [and] "...that as a result of the acuity and severity of patients' physiologic derangements, ICU clinicians may be less inclined than those in other disciplines to consider the need for spiritual support until there was a crisis or survival was unlikely...."
- • Resource Constraints [p. 17]
- Clinicians spoke of their limited time "to engage in lengthy conversations to identify and address family members' spiritual support needs." Spiritual health practitioners "spoke of time constraints, related to staffing their service": "Because there's not a lot of us to go around, I feel stretched all the time...."
- • Respect for the Role of Spiritual Care [p. 18]
- "In general, spiritual health practitioners felt respected by clinicians and that their skills and contributions to patient care were valued." Examples included an ability "to bring a sense of calm to intense situations" and to offer "different perspectives...contributing to better understanding of family members' behaviors and needs...."
- • Interprofessional Approach [p. 18]
- "Spiritual health practitioners and clinicians identified the importance of a team approach to supporting family members with spiritual distress, where clinicians could provide general spiritual support and seek specialized expertise from spiritual health practitioners as needed...."
- • Continuity of Care [p. 18]
- "Clinicians identified the importance of continuity throughout the trajectory of illness in facilitating conversations about spiritual distress and offering spiritual support."
The authors present a table of "Suggestions for improving spiritual care..." [Table 2, p. 19], emphasizing education, embedding spiritual care in the ICU, and spiritual care research, giving supporting quotes from the study. In addition, several points in the Discussion section of the paper stood out to this reader. First, "...[O]ur study highlights the importance of balancing resources, including the need
to ensure referrals to spiritual care are appropriate and not simply part of a prescriptive checklist, and that spiritual health practitioner staffing is sufficient to address the potential increase in referrals generated by screening tools" [p. 19]. Second, "...[O]ur results highlight how past experiences within and outside of healthcare settings influence trust and subsequent receptivity toward spiritual support"; and "while clinicians cannot change past events and experiences, clinician awareness, respectful interactions, and fostering autonomy can reduce the risk of exacerbating past traumatic experiences and may help to rebuild trust over time" [p. 19]. What is stated here for clinicians may also be true in the case of chaplains. And third, in light of how some family members may see the spiritual support of clinicians sufficient while others may see their support as in appropriate or inadequate, the authors propose "establishing clarity around how individual family members wish to be supported and how each individual team member can help meet those support needs" [p. 20]. However, they note that the "[s]uccess of such an approach would require cohesive interprofessional collaboration, communication, and commitment" [p. 20].
The issues raised in the article would seem to have relevance beyond the ICU family focus, and each of the themes addressed here could be considered as important aspects of the operation of spiritual care in a medical setting worth tracking, as healthcare may be changing in the pandemic era. How will increased use of remote and virtual interactions affect how spirituality comes up and is handled in clinician communications? Will there be fewer checks and balances on hindrances to spiritual care? Will clinicians who are uncomfortable with spirituality have increased opportunity to keep it at arm's length? Will trust issues be harder to overcome? Also, will enabling factors, like an interprofessional approach to care, be diminished or bolstered? It may be a productive exercise these days to read all spirituality & health research through a COVID-19 lens, not exclusively but in the service of capitalizing upon the insights of pre-pandemic studies for present and future benefit.
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Our second article this month, "Bereavement support on the frontline of COVID-19...," out of the United Kingdom, is aimed at physicians. It is a fairly well referenced [i.e., 41 citations], research-based review of issues pertinent to care in the ICU, in light of the interactional and emotional implications of the pandemic. As such, it should offer insights of value to chaplains as well. The authors "review bereavement risk factors in COVID-19, provide evidence-based recommendations for how to support bereaved relatives..., and highlight additional resources" [pre-proof MS p. 8]. The article straightforwardly addresses six areas, among the major points of which are:
DYING IN HOSPITAL, ADVANCE CARE PLANNING AND COMMUNICATION [--pre-proof MS pp. 1-3]
PATIENT ISOLATION, FAMILY ACCESS AND VIRTUAL COMMUNICATION [--pre-proof MS p. 3]
- "Most deaths from COVID-19 currently occur in hospital. ...[Advance Care Planning] prepares family members for the death of their relative and leads to better outcomes after death."
- "...[C]lear, complete communication by healthcare providers improves bereaved relatives' satisfaction with end-of-life care, and...families appreciate proactive, regular and sensitive communication and accurate information."
- "Specific communication strategies that increase family satisfaction include: empathic statements assuring non-abandonment, assurances of comfort, and provision of written information."
- "Family conferences informed by the 'VALUE' mnemonic have been found to lessen bereavement burden." [--See Related Items of Interest, §III, below.]
- "The de-personalisation of protective clothing and communication through a mask and visor is testing, particularly when a patient is frail or hearing impaired; however, guidelines and flashcards are now available...." [--See Related Items of Interest, §IV, below]
- "Regular telephone communication is vital, with Swiss guidance recommending twice-daily calls to family members when a patient is seriously ill or dying...."
SYMPTOM MANAGEMENT [--pre-proof MS p. 4]
- "Restricted access to a patient and not being able to say 'goodbye' are distressing to relatives and associated with PGD [Prolonged Grief Disorder] and PTSD [Post-Traumatic Stress Disorder] in bereavement."
- "If relatives are not in a high-risk category, in quarantine or unwell themselves, it is therefore recommended that access be granted for short periods. ...However, for many relatives visiting may pose a significant health risk. There may also be shortages of PPE for relatives or a lack of staff to assist relatives with donning PPE...."
- "It is...also recommended that clinical teams help enable patient-family communication via virtual means, following infection control guidelines for devices.... However, Swiss guidance does not recommend virtual contact between patients with COVID-19 and their families when a patient is actively dying...."
EMOTIONAL AND SPIRITUAL DISTRESS [--pre-proof MS pp. 4-5]
- "The breathlessness associated with COVID-19 may also be problematic for bereavement. Severe shortness of breath in patients can be highly distressing to relatives. Among bereaved caregivers, the perception that a patient could not breathe peacefully is associated with a higher risk of PTSD, and a patient dying while intubated is associated with both PGD and PTSD."
GRIEVING IN ISOLATION AND BEREAVEMENT SUPPORT [--pre-proof MS pp. 5-6]
- "Patients who are seriously ill with COVID-19 and their families are inevitably anxious, afraid, alone and in need emotional support, yet this is an area in which hospital care has been found lacking."
- "Care for the patient and family should provide for physical comfort, autonomy, meaningfulness, preparedness, and interpersonal connection and be mindful of the 'ABCDs' of dignity-conserving care (attitudes, behaviours, compassion, and dialogue). Care must also respect cultural and religious diversity...."
- "Bereaved family members may question why they have survived when their loved-one did not, feel guilt over possibly transmitting the disease and a loss of coherence or meaning, and mourn the loss of future dreams and hopes."
- "Relatives' perception of whether a patient received emotional support at the end of life is a determinant of their experience of bereavement."
- "Access to spiritual support at the end of life is important for many patients and families, whether or not they are religious...."
- "...[S]piritual care during COVID-19 will include helping individuals face and overcome fears and find hope and meaning; attending to existential suffering; addressing feelings of punishment, guilt, unfairness, and remorse; assisting when people need to confess or reconcile; and offering grief support and death preparation assistance...."
- "While chaplains can play a crucial role in the team and have specialist skills, 'spiritual first-aid', based on skilled listening and expressing kindness and compassion, can also be provided by other staff."
THE IMPACT OF DEATHS FROM COVID-19 AMONG STAFF [--pre-proof MS pp. 6-7]
- "A common impulse for those experiencing grief is to seek comfort in the arms of family, friends and community. Yet in the context of COVID-19, bereaved family members may have limited social support due to physical distancing requirements, and be forced to grieve alone. Loss of social and community networks, living alone and loss of income are known to exacerbate psychological morbidity in bereavement."
- "Health and social care professionals, and those supporting the bereaved informally, can encourage those who are grieving to express their grief and reach out to others, however they can --online or via telephone, letters and videos. Although these cannot replace face-to-face conversation and physical affection, they nevertheless enable connection in the interim."
- "A systematic review of bereavement support in adult ICU identified several interventions: a personal memento, a handwritten condolence letter, a post-death meeting, storytelling, research participation, use of a diary and a bereavement follow-up program. Although evidence for effectiveness was weak, all interventions were well accepted by families."
- "Another way a pandemic such as COVID-19 disrupts the process of bereavement is by impacting families' ability to hold funerals and other ceremonies. ...After the crisis, relatives can [hold] ceremonies to remember their loved one, and culturally sensitive bereavement services held in hospitals may be helpful...for closure and to show respect for the dead."
- "...[W]e know from the experiences of clinicians in China, Italy, and Switzerland that care of patients with COVID-19 results in major ethical dilemmas and a psychological toll on the health care teams caring for them, in part due to limited resources. Frontline staff are at risk of secondary or vicarious trauma, as a result of repeated empathic engagement with sadness and loss, as well as moral injury...."
- "Self-care strategies and individual 'resilience tools' such as mindfulness and reflective practice are insufficient; resilience should not become another responsibility of staff working in traumatic conditions, but requires an organisational and systemic response. ...Single-session psychological debriefing approaches should be avoided as they may cause additional harm."
The litany of observations and recommendations by Selman and colleagues may be largely familiar to experienced chaplains, but it's a good checklist for review that may inform practice. It's also a reminder of the value of considering how knowledge from previous contexts may be applied to new situations --which is essential for the current pandemic, until new research particular to COVID-19 establishes a specialized knowledge base. The dynamics of breathlessness in critical illness, combined with the interactional hurdles of necessary infection control measures, obviously put families and healthcare providers, as well as patients, in a terrible predicament. And, of course, the list of burdens in the article is hardly comprehensive. For this reader, one point in the article stands out as having been raised incompletely: the recommendation that relatives of COVID-19 patients be allowed visits [--see pre-proof MS p. 3] does not address how family members emotional reaction while wearing PPE, including crying and the need to blow one's nose, which may compromise the PPE barrier, or the family member's emotional state may jeopardize proper PPE doffing technique. Still, this is an article that covers a good bit of informational ground in just a handful pages, is a review that's very forward-looking.
Suggestions for Use of the Articles for Student Discussion:
For the "Challenges and enablers..." article, discussion could begin by asking the chaplains' group to think specifically about how the themes identified here resonate with their experience prior to March 2020. Some of these themes should be recognized as long-standing issues regarding how others perceive chaplains and how that affects how we are able to connect with those whom we seek to serve. Then, however, the group could talk about how these themes have been affected by the pandemic. While trust-building is addressed here in terms of the physician-family relationship, it's certainly key to the chaplain-family relationship. How might trust-building have been made more difficult by the exigencies of the pandemic? Also, does basic communication and the means for conceptual and role clarity become only more complex in the pandemic context, or might virtual means of communication also proffer some new ways to communicate and perhaps even to establish innovative pathways for interprofessional collaboration? Can members of the group articulate their "Scope of Practice"? It may also be worth looking closely at the authors' description of "spirituality" [p. 19] and definition of "spiritual distress" [p. 12] and "spiritual care" [p. 13]. The group could consider the author's observation that some people could be experiencing spiritual distress but not label it as such [--see p. 15].
For the "Bereavement support on the frontline of COVID-19..." article, the first question could be simply, "What new did you learn from reading this?" --and then spending a little time on those points. Discussion could concentrate on the section about Emotional and Spiritual Distress [--pre-proof MS pp. 4-5], but then also connect with points in other sections about distancing and isolation. Since the article is aimed at physicians, how might chaplains help medical providers better address the problems raised in the article? This discussion would be a good opportunity to invite a physician into the chaplains' circle, or it might even be a resource for a joint physician-chaplain "journal club" meeting (which could be accomplished online). The authors mention the use of flashcards, but the examples given in the article's embedded link are extremely limited. What other strategies might be useful, and how many other ways to communicate can the group suggest? Finally, the group might discuss support of staff and then how COVID-19 deaths may have affected them -- the members of the group -- personally.
Note: The link in Table 2 to "Talking to relatives: a guide to compassionate phone communication during Covid-19" does not appear to work, as published in the pre-proof manuscript. However, the address is technically correct: https://www.pslhub.org/learn/coronavirus-covid19/tips/talking-to-relatives-a-guide-to-compassionate-phone-communication-during-covid-19-r2009.
Related Items of Interest:
I. Amanda L. Roze des Ordons and colleagues have been producing a stream of insightful publications. See the February 2020 Article-of-the-Month page. In addition to the recent articles cited there, see also the following (including one in the Journal of Health Care Chaplaincy):
Mottiar, M., Hendin, A., Fischer, L., Roze des Ordons, A. and Hartwick, M. "End-of-life care in patients with a highly transmissible respiratory virus: implications for COVID-19." Canadian Journal of Anaesthesia (2020): online ahead of print, 5/11/20. [(Abstract:) Symptom management and end-of-life care are core skills for all physicians, although in ordinary times many anesthesiologists have fewer occasions to use these skills. The current coronavirus disease (COVID-19) pandemic has caused significant mortality over a short time and has necessitated an increase in provision of both critical care and palliative care. For anesthesiologists deployed to units caring for patients with COVID-19, this narrative review provides guidance on conducting goals of care discussions, withdrawing life-sustaining measures, and managing distressing symptoms.]
Roze des Ordons, A. L., MacIsaac, L., Hui, J., Everson, J. and Ellaway, R. H. "Compassion in the clinical context: constrained, distributed, and adaptive." Journal of General Internal Medicine 35, no. 1 (January 2020): 198-206. [(Abstract:) BACKGROUND: Compassion is intrinsically situated within particular contexts and how these contexts can shape compassion has not been well-described. OBJECTIVE: The purpose of the study was to describe how individual and contextual challenges can impact compassion within critical care and palliative care settings. DESIGN: This qualitative study adopted phenomenology and autoethnography to inform data collection, and principles of activity theory and realist inquiry for data interpretation. PARTICIPANTS: Five clinicians who work in critical care (n = 3) and palliative care (n = 3) participated in the study. APPROACH: Qualitative data were obtained from ethnographic observations, interviews, and focus groups. Participants observed and recorded field notes (n = 53) on instances of suffering and compassion in their workplace settings. At the end of the study period, they participated in a focus group or individual interview to reflect on their experiences. Data was analyzed using constructivist grounded theory techniques and iteratively synthesized through group discussion and model building. KEY RESULTS: The findings reflected four phenomena associated with compassion in context: individual gaps and lapses in compassion, relational challenges, contextual constraints on compassion, and distributed compassion. Individual gaps and lapses in compassion involved inattention, intention vs. perception, personal capacity, and personal toll. Relational challenges included receptivity, fragmentation, and lack of shared understanding. Contextual constraints consisted of situational pressures, the clinical environment, gaps in education, and organizational culture. The distribution of compassion within teams and how teams adapt their behaviors in response to perceived needs for greater compassion modulated these challenges. CONCLUSIONS: The study illustrates the many ways in which compassion can be shaped by context and highlights the role of teamwork in identifying gaps and lapses in compassion and responding in a way that supports patients, families, and colleagues.]
Roze des Ordons, A. L., Stelfox, H. T., Sinuff, T., Grindrod-Millar, K. and Sinclair, S. "Exploring spiritual health practitioners' roles and activities in critical care contexts." Journal of Health Care Chaplaincy (2020): online ahead of print, 3/11/20. [(Abstract:) Family members of patients admitted to the intensive care unit (ICU) experience multidimensional distress. Many clinicians lack an understanding of spiritual health practitioners' role and approaches to providing spiritual support. Through semi-structured interviews and focus groups with 10 spiritual health practitioners, we explored how spiritual health practitioners support families of patients in the ICU to better understand their scope of practice and role within an interdisciplinary critical care team. Spiritual health practitioners' work was described through clinical roles (family support, clinician support, bridging family members and clinicians), activities (companioning, counseling, facilitating difficult conversations, addressing individual needs), tensions (within and between roles and activities, navigating between hope and anticipated clinical trajectory, balancing supportive care and workload) and foundational principles (holistic perspective, resilience). A more comprehensive understanding of these roles and skills may enable clinicians to better integrate spiritual health practitioners into the fabric of care for patients, families, and clinicians themselves.]
II. The issue of trust identified by Roze des Ordons and colleagues would seem to be especially important in the time of visitor restrictions and virtual communications necessitated by COVID-19. Our October 2019 Article-of-the-Month on "The role of the chaplain as a patient navigator and advocate for patients in the intensive care unit...," while reporting a study with a very different focus than the current pandemic, may still prompt useful thought about the potential for chaplains to help build trust between families and clinicians.
III. The Selman, et al. article refers to the "VALUE" mnemonic to inform family meetings [--see pre-proof MS p. 2]. This mnemonic was developed by J. Randall Curtis and colleagues at the University of Washington and Harborview Medical Center (Seattle, WA) out of research in the early 2000s. It refers to a checklist to remind clinicians to: Value comments made by the family, Acknowledge family emotions, Listen, Understand the patient as a person, and Elicit family questions. The reference for this in our featured article is to a randomized control trial, "A communication strategy and brochure for relatives of patients dying in the ICU," published an international group in the New England Journal of Medicine in 2007 [vol. 356, no. 5, pp. 369-378; available online through the University of Washington]. However, a more practical reference for chaplains would be:
Curtis, J. R. "Caring for patients with critical illness and their families: the value of the integrated clinical team." Respiratory Care 53, no. 4 (April 2008): 480-487. [This is a memorial lecture by Dr. Curtis, going well beyond the "VALUE" mnemonic, but giving some background about the research that led up to it (--see pp. 482-483). Notably, Curtis says of it: "None of the VALUE checklist communication items is exclusively the domain of physicians; the interdisciplinary team can contribute substantially in making sure that families have the opportunity to have this kind of communication with ICU clinicians" (p. 483) The article is available freely online from the journal.]
IV. The authors of the "Bereavement support..." article state, regarding communication difficulties at the bedside, "guidelines and flashcards are now available" [pre-proof MS p. 2], and they refer (in a table) to a resource, www.cardmedic.com, which was is a commercial site "inspired by a news article on a patient surviving COVID-19 after an admission to an Intensive Care Unit" [--from the website's About section]. The website includes only a few flashcards regarding religion, but the idea of flashcards is not far off from work that has been done in chaplaincy circles around visual communication aids. See especially our September 2016 Article-of-the-Month featuring "A novel picture guide to improve spiritual care and reduce anxiety in mechanically ventilated adults in the Intensive Care Unit." Visual communication strategies previously developed for patients unable to speak may have new applications in helping to overcome barriers presented by PPE for COVID-19 patients.
V. Selman and colleagues make the statement, "Single-session psychological debriefing approaches should be avoided as they may cause additional harm" [pre-proof MS p. 7]. They cite a 2019 review [Brooks, S. K., Rubin, G. J. and Greenberg, N., "Traumatic stress within disaster-exposed occupations: overview of the literature and suggestions for the management of traumatic stress in the workplace," British Medical Bulletin 129, no. 1 (2019): 25-34] that is quite critical of the practice of Critical Incident Stress Debriefing (CISD). Chaplains should note that the usefulness of CISD (and the closely related subject of CISM: Critical Incident Stress Management) is somewhat controversial, though the practice is widespread. A February 2016 APC Forum article by Chaplain Mike Oshry, "Critical Incident Stress Management methodologies provide healing" [vol. 18, no. 1], clearly supports it. At present, opinion appears to remain divided.
VI. For more on resources for the COVID-19 pandemic, please refer to the April 2020 Article-of-the-Month page.