Patient–Family Experience at the Onset of COVID-19: Interviews with Ten Palliative Chaplains

Abstract

Background:

As thousands of patients, often with complex care needs, were hospitalized due to the coronavirus disease 2019 (COVID-19) pandemic, demand for palliative care was magnified. Part of hospitals' palliative care teams, palliative chaplains delivered emotional support while specializing in the religious, spiritual, and the existential aspects of care. With COVID-19 containment measures increasing isolation and disrupting supportive family connections, the emotional and spiritual well-being of the patients and families were unclear.

Objectives:

Through the unique perspectives and insights of inpatient palliative care chaplains, we sought to qualitatively capture their perceptions and the patient–family experience as the pandemic emerged.

Setting/Subjects:

This investigation was based in the United States.

Design:

Individual semistructured telephone interviews (n = 10) were conducted between April 22 and May 6, 2020. Through thematic analysis, analyses progressed through initial coding sessions, refining a codebook, identifying representative quotes, and recognizing themes.

Results:

Five themes were identified and described through the coding process and recognizing representative quotes: (1) visitor restrictions—patients, (2) visitor restrictions—families, (3) religious struggle, (4) spiritual distress, and (5) decision making.

Conclusions:

Inpatient palliative care chaplains were active interprofessional partners caring for patients and families as the uncertainty of the pandemic unfolded. The crises of this pandemic magnified chaplain specialization as they attended to emotional, spiritual, and religious suffering and as well as complex decision making with patients and their family members.

Background

Throughout the coronavirus disease 2019 (COVID-19) pandemic, the crucial contributions of health care workers have been emphasized. The distinct role of health care chaplains was also illuminated by news sources. Spiritual care researchers within palliative care¹ have observed chaplains' steadfast presence for years, especially in caring for patients and families experiencing serious illness, typically in the inpatient setting.²

In addition to providing spiritual and emotional care to patients and family members amid the experience of serious illness, palliative chaplains are involved in advance care planning and decision making.^3,4 The need for a dedicated chaplain on the palliative care team is recognized as best practice.⁵ Throughout this COVID-19 pandemic, inpatient palliative care chaplains have continued to serve with their interprofessional members, although some hospitals did not regard chaplains as essential staff.^6,7

Supporting patient and family well-being during the experience of serious illness has been a consistent focus within palliative care. Along with fellow team members, palliative chaplains deliver emotional support while specializing in the religious, spiritual, and the existential realms.⁵ The COVID-19 pandemic magnified palliative care needs as thousands of patients were hospitalized, often requiring complex care.⁸ Containment measures had the indirect effect of increasing isolation, thereby disrupting connectedness.⁹

Connection to self, others, the world, or a divine or superior being are important factors in spirituality, and challenges in such connection and suffering associated with lack of meaning can be indicators of spiritual distress.¹⁰ Since religion and its functioning within the larger context of established institutions and structures may inform spirituality,¹¹ religious struggle may also play an important role in the pandemic context.

It was unknown how this pandemic was impacting the emotional and spiritual well-being of the patients and families within an inpatient setting. With inpatient palliative chaplains' experience of supporting seriously ill patients and their family members during this viral pandemic, this team ventured the research question: What are the unique practice-based insights of inpatient palliative care chaplains during a pandemic?

Methods

Design

We conducted semistructured telephone interviews with dedicated inpatient palliative care chaplains. Dedicated palliative chaplains have appointed hours with the team participating in interdisciplinary rounds and staff activities. Interviews were conducted between April 22 and May 6, 2020.

Recruitment

The University of Minnesota Institutional Review Board approved all study procedures and informed consent was not required (STUDY00009602A). A convenience sample of 10 U.S.-based chaplains was included. Broad geographic representation was sought to balance the insights and perspectives. All 10 chaplains invited through email consented to be interviewed. Compensation for participation was to choose from one of four chaplaincy care books (average price $27.44).

Interviews

The average length of the semistructured interviews was ∼42 minutes. The interview guide (Table 1) invited the views and practice-based insights of the palliative care chaplains. When interviewed, definitions for key terms such as religious struggle and spiritual distress were not given, leaving them open to the chaplain's understanding. All recordings were transcribed verbatim. Demographic characteristics were completed before the interview. Interviews were conducted until data saturation was reached.

Table 1.

Interview Guide (Select Questions)

1. Visitor restrictions—patients: What are you hearing from your patients about the current restrictions for loved ones (family) from not being able to provide inperson support?

2. Visitor restrictions—loved ones: What are you hearing from the loved ones (family) of your patients about the current restrictions from being able to provide inperson support?

3. Stopped doing?: How have the imposed restrictions for social distancing changed your work and interventions with patients?

4. Religious distress (struggle): How do you see religious distress or struggle showing up differently now?

5. Spiritual distress—connection: Because of the isolation and the challenges for any kind of human connection, how are you hearing patients or loved one talk about this lack of connection?

6. Decision making: Recognizing palliative chaplains as partners in decision making and goals-of-care conversations, can you tell me a story of how the pandemic has impacted those conversations?

Analyses

The process of thematic analysis began with data familiarization. The research team then conducted coding sessions identifying mutually agreed upon representative quotes collating them with initially generated codes. With a refined codebook, identified themes were discussed and reviewed. Analysis continued as the themes were finalized based on consensus with the research team.¹²

Results

The research participants (n = 10) represented the four geographic regions of the United States as identified by the decennial census. Most [8] of the chaplains worked in an academic medical center. The sample was evenly split between self-identified male and female genders. Although the average age was 40.9 years old, the average years of experience was 3.6 years. With race/ethnicity, half of the participants reported as White [5]. Most of the chaplains identified as Christian [7] (Table 2).

Table 2.

Demographic Characteristics

	Total (N = 10)
Characteristic	f (%)
Region of the United States
Midwest	3 (30)
Northeast	3 (30)
West	3 (30)
South	1 (10)
Age
Mean = 40.9 years old
31–40 years	5 (50)
41–50 years	4 (40)
51–60 years	1 (10)
Palliative chaplaincy experience
Mean = 3.6 years
<1 year–4 years	6 (60)
5–9 years	4 (40)
Gender
Female	5 (50)
Male	5 (50)
Race/ethnicity
White	5 (50)
Latinx	3 (30)
Black	1 (10)
Chinese American	1 (10)
Religion
Christian	7 (70)
Humanist	1 (10)
Jewish	1 (10)
Unitarian Universalist	1 (10)

Five themes, associated codes, and representative quotes focused on the patient and family experience were identified. Additional themes concerning palliative chaplains and other interprofessional team partners will be discussed in another article.

Theme: Visitor restrictions—patients

For those patients who could speak, the emotions experienced by the patients revealed a cauldron of distress (Table 3). The restrictions imposed to protect had the unintended consequences of patients encountering physical absence from their loved ones. To adapt, many patients used the telephone or online tools. Some patients responded in ways that put them or their caregivers at risk such as refusing to use personal protective equipment (PPE). Though necessary due to staff and PPE shortages, the restriction policy also neglected a range of vulnerable patients who depended on family for functional assistance while hospitalized.

Table 3.

Visitor Restrictions—Patients

Codes	Representative quotes
Cauldron of distress	“…so the ones who were conscious and could speak all expressed fear and sadness and deep concern for the people they couldn't see. Sometimes they were afraid they'd made them sick. Sometimes they were afraid they were going to die without them.”
Responses—verbal and behavioral	“Patients who might have family on speaker phone all the time.”“Many patients will reject working with PPE or any of their nurses because of the lack of the presence of familiar faces visiting them.”
Not all the same	“I think it's really difficult for people to not have their families here, especially for our vulnerable adult population…I think it's been difficult to determine who is a vulnerable adult.”

PPE, personal protective equipment.

Theme: Visitor restrictions—families

The emotions experienced by family members can also fittingly be described as a cauldron of distress (Table 4). Chaplains often communicated with family members over the phone or videoconferencing functioning “like almost being their eyes.” As a result, barriers were encountered as family members were not able to see and understand their loved ones' condition. Misapprehensions and disbelief of a patient's declining status, for example, were commonly reported. Also experienced with the family member's suffering was their desire to have more family members be present than a policy would allow, especially as a patient was imminently dying.

Table 4.

Visitor Restrictions—Families

Codes	Representative quotes
Cauldron of distress	“…accepting that they can't be there with them when they're dying is even worse than accepting that they are dying.”
Cannot see	“They just don't have the visual of what their family member is looking like. So, what I've found my role over time to be is like almost being their eyes.”“…a lot of times they don't have a realistic picture of what the patient is going through…”
Restriction policies, exceptions	“We have a lot of folks who want to be the exception, especially if they haven't connected with their loved one in weeks. Some of them are trying to find loopholes.”
Barrier—PPE	“…they're needing all the PPE, which is really necessary… and the alienation and isolation that comes from being present but present with all the PPE.”
Missing time window	“They're often missing the window where their loved one is still responsive…they're losing whatever time they might've had a few weeks before death.”
Multiple family losses	“But you have that sense of we're not there and our loved one has died. Just the shock of that, the grief, the complex grief and sometimes the compounded grief when you have multiple losses in the family, just relationship cost.”
Dying without COVID-19	“The patient was dying and his wife was there, but she was alone at his bedside and her grief was heightened in a way that I've never seen before…It was really negative impacting an end of life patient's experience of not having family there at his side.”

COVID-19, coronavirus disease 2019.

Chaplains also reported bearing witness to the uneven application of the hospital-specific restriction policy and family members' awareness of this reality such as when greater number of family members were permitted to visit at the end of life based upon the local discretion of an authorizing administrator. When family members could be present at the bedside, the necessary use of PPE and physical distancing recommendations offered enhanced physical safety but contributed to emotional suffering.

It was the case, though, that family members were often absent from the bedside during imminent dying, either because multiple family members were also ill or hospitalized with COVID-19 or because the prognostic window to say goodbye was lost because the patient was no longer responding or already dead. Noted, too, was the heightened grief of family members whose loved one was dying in the hospital, apart from COVID-19 illness, but influenced by the absence of family lovingly surrounding a bedside.

Theme: Religious struggle

With the physical absence of not being able to see or touch their loved one, family members expressed a desire to know whether a beloved family member was at peace, often as informed by their respective religious traditions (Table 5). Chaplains described the challenge of providing this reassurance. In one instance, the palliative chaplain reported being unable to guarantee a concerned family member that an overburdened Catholic priest chaplain would be able to facilitate the desired anointing before death.

Table 5.

Religious Struggle

Codes	Representative quotes
Absence	“When they can't see that it's really hard for them to connect with the idea that the patient is at peace.”
Reassurance	“If the priest could just call into her room so that her mother could hear it, even though her mother might not be able to hear it, that that would be enough. I wasn't able to reassure her that that was possible.”
Religious expectations not met	“They're expressing that they don't know how he is and where he is and it's Ramadan and they miss him, but they're saying, ‘We don't want him to be worried that he can't stand.’”
Religious expectations not met	(Unavailability—Catholic ritual) “…to explain it to families has removed a lot of that emotional, and spiritual, and religious angst.”
Punishment	“When they're not just admitted, but they have multiple family members admitted—that there is more religious punishment…of why this is unfolding for them…You can finish it in different ways, like ‘what have I done wrong to deserve this…’”
Intensity	“I would say the intensity of it is my sense, that I've observed that it's increased… multiple times per day and every day.”
Coping increased	“I think I've done more prayers now than ever because family members are disconnected and so many people don't know what to turn to.”
Coping increased	“I feel like the religious struggle has changed, but yet at the same time people are grabbing hold of their faith and they're prayerful and they're hopeful.”

Religious expectations were also heightened since holy seasons were in full swing for Christianity, Islam, and Judaism. Chaplains heard family members considering the possibility of religious punishment due to multiple family members hospitalized. Intense and complex religious struggles were reported. As religious struggle increased, so did religious coping with practices such as prayer and the belief that this viral pandemic and its consequences would not dominate their lives forever.

Theme: Spiritual distress

With spirituality definitions often stressing the importance of connection, chaplains described patients feeling “untouched and untouchable” and “really isolated” as indicative of spiritual distress (Table 6). Family members expressed a sense of guilt for abandoning their loved one with the perceived sense of role obligation. Chaplains often became intermediaries of care when family members also frequently sought reassurance to buffer their coping and minimize distress with not being able to physically attend to their loved ones. With this disconnection, family members expressed loss for not being able to accompany their family member through serious illness. Another component of this loss was the absence of the patient's identity within their family or community.

Table 6.

Spiritual Distress

Codes	Representative quotes
Untouchable	“Patients feel untouched and untouchable, for sure—no question. I think that they just end up feeling really isolated.”
Guilt	“I think a lot of expression of guilt about not being able to be there… like I have abandoned my loved one. They feel like they're supposed to take care of their mother, or their uncle, or their daughter.”
Constantly search for information	“I have people constantly asking me to check in on their loved one and give them an update…They want to know that their family member feels OK spiritually and emotionally… that they're not suffering and they're not feeling alone.”
Losses in ability to journey with and in community—identity	“It's just the loss of relationship and the loss of the ability to journey with loved ones through their illness and the unknown of it.”
Losses in ability to journey with and in community—identity	“…deep loss of community, especially when that was part of their identity.”

Theme: Decision making

The pandemic intensified and challenged the support that palliative chaplains shared with patients and family members in their medical decision making (Table 7). Technology was a help and a hindrance. Videoconferencing facilitated connection. It helped staff, for instance, to increase health literacy of remote family members by visually seeing what their loved one was experiencing and, hopefully, enhance understanding. Technology could also be a hindrance during family meetings over the phone as it limited the ability to notice nonverbal emotionally expressive cues.

Table 7.

Decision Making

Codes	Representative quotes
Technology hinders	(Phone) “It's all just some giant conference call and it's tough because you don't know who is speaking or what they are speaking. People talk over one another.”
Technology hinders	(Video) “…and she's never done the technology thing. So you've got to get ahold of the niece who's in a different state and the niece has to patch her in an do x, y, z.”
Technology helps	“I don't remember if they did WebMD or Google, but something to see what an image of an intubated patient looks like. They were able to see, ‘Oh, that's what my family member looks like right now? They would never want that.’”
Family emotionally incapable	“It was not that she didn't understand it; it was that she was truly incapable of making that decision because of her grief and almost being frozen in place… like it paralyzed the conversation…”
Families can't see-misapprehension-mistrust	“Family members can't see the patient to get a sense of what's really going on.”
Families can't see-misapprehension-mistrust	“…not being able to see or be present and observe for herself what's going on has caused her to feel a lot of suspicion or mistrust towards the team…”
Giving up on	“…the whole team was trying to get her to accept the reality that her loved one was not going to recover and wasn't showing any signs of the ability to wean off the ventilator and it had been a long time… She was really struggling because she was feeling like she was giving up on her loved one.”

Because videoconferencing depended upon both staff and family competency for application utilization, this was not universally dependable, especially in the early days of COVID-19. Visitor restrictions contributed to family members often misunderstanding a patient's status and not trusting the care being provided. Chaplains also remarked on how the burdensome emotional weight of the serious illness circumstances could paralyze the decision making for some family members. Family members additionally expressed violating an obligation, a “giving up on” when not able to be physically present with their loved one.

Discussion

Inpatient palliative care chaplains were essential in supporting patients and families through unforeseen decision-making processes during the early days of COVID-19. Chaplains also consistently observed spiritual distress through a magnified sense of disconnection exhibited as patients and family members endured physical separation because of the restriction policies. High levels of religious struggle were reported. Collectively, these inpatient palliative care chaplains encountered and responded to sobering patient and family moments as they witnessed multidimensional suffering.

Researchers have previously reported palliative chaplain involvement in medical decision making, with the level of their involvement impacting the content of their work.^3,4 In addition, nonchaplain palliative clinicians anticipate chaplains will be involved with decision-making processes.¹³ These findings contribute to the evidence base related to the palliative care decision-making experience involving chaplains during the onset of COVID-19 such as supporting emotionally distraught family members rendered incapable of a goals-of-care conversation. Chaplains had key insights into how religious values may impact decision making.

It was noted during a previous pandemic that physical isolation disrupted the relationships between patients, families, and health care workers.⁹ Palliative chaplains similarly noted how the physical separation between loved ones contributed to family members harboring mistrust toward care providers. As family members narrated feeling as though they were “giving up” on loved ones, despite having no control, chaplains were involved in caring for their existential distress. In their role as dedicated palliative chaplains, their experience facilitated decision making within a complex care environment.

Although there is some evidence of palliative chaplains responding to spiritual distress and religious struggle,^14,15 these results shed new light on palliative chaplains addressing it during the unknown complexities of COVID-19. As patients and family members endured physical separation and with it a disconnection prompting spiritual distress, chaplains were a steady source of care. From families expressing their grief about not being able to accompany their loved ones and patients naming feeling untouchable, chaplains served as facilitators for connection. When family members were unable to connect, chaplains recounted being requested to provide reassurance about a patient's emotional and spiritual state.

In recognizing the immense loss of community for patients and families, chaplains sought to be bridges to assuage this grave weight of painful absence. Chaplains encountered families expressing being punished by God, especially with those having multiple family members simultaneously hospitalized with COVID-19. Along with this increase of religious struggle was the rise in religious coping encountered in care delivery, specifically with expanded requests for prayer.

Limitations

These data only reflect the perspectives of a convenience sample of 10 inpatient palliative care chaplains within the United States and are not transferable beyond it. These interviews occurred during the onset of COVID-19 and this timing may have impacted our findings by limiting the amount of experience our study participants had working in the pandemic setting. In addition, interview bias is possible as the lead author was the primary interviewer.

Implications for future research

Future research could involve a national cross-sectional survey with a larger sample of palliative care chaplains to address similar subject matter creating a baseline of descriptive data of attitudes, opinions, and work practices. A larger sample would be more representative and could potentially highlight regional similarities and differences. Several of the themes identified in this study may further be enriched with focus groups of palliative chaplains. In addition, interviewing chaplains beyond the United States would offer a richer perspective and additional insights. Last, it would also be important to conduct a separate investigation with patients and families to explore the ways in which a pandemic impacts spiritual and religious struggles.

Conclusion

Even before the COVID-19 pandemic emerged, palliative care patients and family members experienced emotional suffering, spiritual distress, religious struggle, and challenged decision making. The pandemic amplified the toll on each of these aspects as encountered and addressed by inpatient palliative chaplains. This study offers a lens to the inpatient palliative chaplains' experience and their insights with addressing the emotional, religious, spiritual pain, as well as the decision-making needs of patients and their family members amid visitor restrictions and traumatizing uncertainty.

Footnotes

Acknowledgment

The authors express earnest appreciation for each chaplain research participant.

Funding Information

This study was supported by Transforming Chaplaincy.

Author Disclosure Statement

No competing financial interests exist.

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