The Role of Religion and Spirituality in Caregiver Decision-Making about Tracheostomy for Children with Medical Complexity

Abstract

Children with medical complexity (CMC) receive life-sustaining treatments such as tracheostomy. The objective of this paper is to explore the roles of religion and spirituality (R&S) of caregivers of children with medical complexity (CMC) in their decision to pursue tracheostomy for their children. We conducted 41 in-depth interviews of caregivers of CMC who had received tracheostomies in the prior five years. Four themes emerged: 1) Caregivers believed R&S to be powerful for their children’s healing, and helped them cope with their children’s illnesses; 2) Spirituality was an important factor for caregivers in the decision to pursue tracheostomy for their children; 3) Many caregivers did not discuss their spirituality with clinicians for a variety of reasons; 4) Clergy and hospital chaplains played a major supportive role overall; however, they did not play a significant role in the decision-making process. Our study shows the importance of R&S, and the roles of clergy and chaplains in pediatric tracheostomy decision-making.

INTRODUCTION

Children with medical complexity (CMC) (also referred to as children with complex chronic conditions, technology-dependent children, or medically fragile children) are a group of children very high needs for health and support services (Cohen et al., 2011). CMC have conditions that involve multiple organ systems and encompass a broad range of conditions including genetic disorders, extreme prematurity, perinatal ischemic encephalopathy, trauma, infection, degenerative disorders, autoimmune disorders, malignancy and others. Many of these conditions are incurable and result in death in childhood. However, CMC are surviving longer due to technological advances (Feudtner et al., 2001) including life-sustaining treatments (LST) such as tracheostomy. Since many CMC have life-threatening illnesses, they need pediatric palliative care (PPC) services.

One of the domains of PPC is addressing spiritual needs of children and their families (“Pediatric Palliative Care and Hospice Care Commitments, Guidelines, and Recommendations,” 2013). Parents of children with life-threatening illnesses report many spiritual needs (Kelly et al., 2016; Meert et al., 2005; Robinson et al., 2006). Parents of critically ill children with spiritual beliefs have less anxiety and depression than parents who do not have spiritual beliefs (Madrigal et al., 2016). Pastoral care providers acknowledge the many spiritual needs of CMC and their parents, but report that these needs are largely unmet (Feudtner et al., 2003). Healthcare providers’ inability to detect spiritual needs, delay in engaging pastoral care providers, and inadequate pastoral care staffing were barriers to meeting the spiritual care needs of CMC and their families (Feudtner et al., 2003).

Another domain of PPC is supporting families in making healthcare decisions for their children (“Pediatric Palliative Care and Hospice Care Commitments, Guidelines, and Recommendations,” 2013). Spirituality is one of the most helpful factors for parents in making decisions at the end of life for their children (Robinson et al., 2006). A large proportion of parents of children in the pediatric intensive care unit, especially those with spiritual beliefs, reported that their beliefs influenced their decision-making (Arutyunyan et al., 2018). Most studies of spirituality in PPC focus on decision-making in the intensive care or oncology setting (Carroll et al., 2012). There are few studies on the role of spirituality in decision-making about LST, such as tracheostomy, in children (Hexem et al., 2011; Superdock et al., 2018). Although reports exist, the role of chaplains, especially in decision-making about LST in children, is an under-researched component of spirituality in PPC (Jinks, 2018; Wirpsa et al., 2019). In the current study, we seek to address these gaps. Our objectives are to describe caregivers’ perspectives on: 1) religion and spirituality (R&S) as factors in decision-making about tracheostomy for their children, and 2) the role of spiritual support persons in tracheostomy decision-making for children.

METHODS

This paper describes one aspect of a larger qualitative study to understand healthcare providers’ roles in the tracheostomy decision-making process for CMC (Nageswaran et al., 2018). Wake Forest Health Sciences Institutional Review Board approved the study.

Caregivers of CMC were eligible for the study if their children: (1) were <18 years, (2) had a chronic health condition lasting or expected to last ≥ 12 months, (3) had a tracheostomy with or without chronic mechanical ventilation, (4) had the tracheostomy ≤ 5 years prior to the interview, (5) were current or former patients at Brenner Children’s Hospital (BCH), and (6) not institutionalized. Caregivers also needed to be: (1) ≥ 18 years old, (2) primarily English- or Spanish-speaking, and (3) the primary caregiver most knowledgeable about the child’s condition and services the child received. Additional caregivers participated as allowed by the primary caregiver. Bereaved caregivers were included except within 6 months of the child’s death in order to not interfere with the bereavement process.

Recruitment

Eligible children were identified from: (1) the hospital’s administrative database using procedure codes for tracheostomy, (2) a list of children who received tracheostomy, maintained by the otorhinolaryngology department, and (3) a list of children referred to the Pediatric Enhanced Care Program (PECP), the PPC/complex care program of BCH. From a preliminary list of 140 children from these sources, the PECP nurse coordinator identified children for recruitment. Of the 140 children, 73 were ineligible for various reasons, primarily due to having had tracheostomy > 5 years; 18 were deferred; and 49 were eligible. Of those eligible, 8 refused and 41 were enrolled. Eligible caregivers were recruited by the research associate (S.G.); Spanish-speaking caregivers were recruited by the bilingual PECP social worker.

Data

Child-level data abstracted from medical records include diagnoses, date of tracheostomy, birth and death dates, and insurance type.

Qualitative data emerged from 41 interviews (35 English; 6 Spanish) of 56 caregivers conducted between December 2013 and November 2014. An interview guide was designed to elicit information about the tracheostomy decision-making process and was revised for relevance as interviews progressed. The initial guide included only questions designed to assess the extent to which clergy/chaplains had roles in health-related decision-making. Participants in the second and third interviews named prayer as a resource to guide decision-making, and the third participant also named God as a resource. These concepts were probed, per protocol, and noted by the interviewer to be of particular interest. By about the 16^th interview, enough participants had expressed the importance of personal belief systems and the role of pastoral care in medical decision-making that we wanted to ask everyone explicitly, rather than allow it to come up organically in conversation. We tested ways to ask about these concepts in subsequent interviews, and from Interview 21 onward all 5 specific questions about religion and spirituality (Table 1) were included. In-depth semi-structured interviews were conducted by trained interviewers at locations and times of caregivers’ choosing. During interviews, a sociodemographic survey that included a question on religious affiliation was administered. A $30 incentive was provided for each interview. Interviews were audio-recorded and transcribed verbatim. Spanish transcripts were transcribed and then translated into English by a professional translator.

Table 1.

Questions in the interview guide related to religiosity and spirituality

1.	How did any of your beliefs – your view of the world – play a role in making this decision?
	Probe: In other words, how did your beliefs help you decide?
	Probe: What – if any – were the spiritual beliefs you considered?
2.	If you have a pastor, in what ways did he/she help you with the decision making process?
3.	Did you talk about your spiritual beliefs with your child’s doctors or nurses when you made this decision – why or why not?
4.	Baptist* sometimes offers families the services of a chaplain, or pastoral care. Did you use this service? Why/why not?
	If yes, tell me how that came about and how it worked out.
5.	How can pastors best serve families in situations like yours?

^*Refers to North Carolina Baptist Hospital in which Brenner Children’s Hospital is located

A codebook was developed inductively and revised for accuracy as coding progressed. Two investigators independently coded each transcript using ATLAS.ti (v.7) software,(“ATLAS.ti. Qualitative Data Analysis,” 2013) and reconciled differences in coding to arrive at a consensus. Coded text was summarized by an investigator and summaries were verified and/or expanded by a second investigator. We used thematic content analysis.(Green & Thorogood, 2018) This paper focuses only on recurrent themes that emerged related to R&S. Primary themes were identified by their prevalence and salience in the dataset. No new themes emerged after 18 interviews.

RESULTS

Characteristics of participants are described in Table 2. The sample included a wide range of diagnoses, household incomes, and religious affiliations. The median length of interviews was 66 minutes (range: 35 to 175 minutes). Themes related to caregivers’ perspectives about R&S are presented below. Illustrative quotes from participants are in italics followed by participant identification numbers in brackets. “Clinician” refers to the primary or specialist physician, nurse, and other health care providers; clergy refers to caregivers’ local spiritual support person (e.g. pastor), and chaplain to hospital-based spiritual support staff.

Table 2.

Participant Characteristics

Characteristic	Median (Range) or Number
Children whose caregivers participated in interviews [n=41]
Age, median (range)(a)	2.5 years (5 months – 18 years)
Boys	21
Girls	20
White	29
Black	10
Multiracial	2
Hispanic	7
Health insurance type
Medicaid	31
Private	7
Both	3
Annual household income(b)
< $20,000	17
$20,001 to $40,000	12
$40,001 to $80,000	11
Duration of tracheostomy, median (range)(c)	1.5 years (2 months – 5 years)
Tracheostomy only	25
Tracheostomy and chronic mechanical ventilation	16
Died prior to interview	3
Caregivers who participated in 41 interviews [n=56]
Age, median (range)	36 years (19 years – 53 years)
Relationship to the child
Mother	38
Father	13
Grandmother	3
Grandfather	1
Grandmother figure	1
Education(d)
< high school	9
High school	16
Some college	11
College	17
Religious affiliation
Christian
Protestant	29
Catholic	5
Non-denominational	11
Jewish	2
Muslim	2
Jehovah Witness	1
No affiliation	4
Other/ missing	2

^(a)date of birth to date of interview/ date of death

^(b)n=40; 1 missing

^(c)date of tracheostomy to date of interview/ date of decannulation/ date of death

^(d)n=53; 3 missing

Theme 1. Caregivers believed R&S practices to be powerful for their children’s healing, and helped them to cope with their children’s illnesses

Almost all caregivers expressed their religion (e.g., identification as religious, belonging to a religion or denomination, attending church), and spiritual beliefs (e.g., belief in God or in some higher power) during interviews. Only a few said that they were not religious/spiritual or did not attend church.

Many caregivers mentioned that they believed in prayer to facilitate the healing of their children.

They prayed for or prayed over their children, prayed for healing – some “all the time”, and others when their children’s condition worsened, there were impending medical decisions, or there was uncertainty about their children’s health. Because of the value they place on prayer, caregivers often requested that family, members of their churches, and Facebook contacts to pray for their children. In addition to prayer, caregivers used other religious practices including baptism, anointing a child with oil, covering a child in a prayer shawl, and having a Virgin of Guadalupe altar in the home.

Relying on God helped caregivers make sense of their children’s illnesses. Several caregivers explicitly stated that spirituality helped them in coping with the enormous stress of dealing with their children’s illnesses.

“Without my beliefs, I don’t think I would have made it…Without knowing God and having that relationship with God, I don’t think any of it would have been possible because I would have been depressed, down, feeling sorry for myself.” [D30]

Caregivers described clinicians as agents of God, and technology (e.g., tracheostomy) as tools sent by God to help their children. Several caregivers were thankful that their children were alive, no longer hospitalized, decannulated (or improving toward decannulation), and doing well overall, attributing these positive outcomes to God. Faith helped caregivers find meaning and purpose (“God gave us this child for a reason”), deal with uncertainty (“whatever He wants to happen, gonna happen”), and remain hopeful for improvement of their children’s health (“if God allows it, will no longer need trach”). Several caregivers distrusted the assessment of clinicians when they prognosticated poor outcomes, and instead resorted to faith in God for hopes for better outcomes for their children:

“…although the doctors used to say that there wasn’t a lot of hope, in my heart I was always saying ‘That is the word of a man, but God has the last word.’… And thank God, here is my girl growing and doing many things and she brings us joy every day.” [D39M]

Theme 2. Spirituality was an important factor for caregivers when making decisions about their children’s health.

Some caregivers stated that tracheostomy decision-making was a medical decision, not a spiritual one. However, R&S were important and helpful when they made medical decisions for their children, including tracheostomy. Caregivers relied on their faith not only to make the right decisions, but also to trust physicians’ recommendations, and advocate for LST against recommendations. Caregivers prayed for guidance when making decisions about tracheostomy, and to guide physicians to make the right decisions.

“I did pray…God really gave me the trust to trust the doctor.” [D27]

Several caregivers felt that deciding against a tracheostomy would deny their child life, and that taking a life is acting against God; it is God’s decision when a life is over, not a human decision. “It’s in God’s hands.” These caregivers equated opposition to the tracheostomy to actively killing the child. For these caregivers, denying a tracheostomy was unacceptable. One caregiver explained that regardless of medical intervention, God will take a life whenever He wants to:

“…as a father, I have rights over my daughter, but I don’t have the right to take away her life. I think only God has that right. And so I left it [decision] in the hands of God. Like I told my wife, we will put the trach in and God will decide later what will happen. And He is the only one who can take away and give life.” [D39]

“I thought if I let her die, I was going to hell…If I wouldn’t have gotten her trached, she would have passed away, and I felt like I would have gone to hell and I didn’t want to go to hell.” [D23]

Theme 3. Regardless of their personal levels of spirituality, many caregivers did not discuss their spirituality with clinicians.

Most caregivers said that they had been/would be comfortable discussing their spiritual beliefs with clinicians. However, many did not discuss their spirituality with clinicians for a variety of reasons. Reasons included: clinicians did not seem spiritual, which deterred them from spiritual conversations; perception that spirituality was not the role or responsibility of clinicians; it did not occur to caregivers to discuss spirituality with clinicians; did not feel comfortable doing so; had other spiritual support that did not require physician involvement.

“It was hard to get them [physicians] to talk to us one on one, period. I’m not sure that I would have used that time to discuss spiritual matters when that is not their expertise. (laughs) …I am not going to waste your time because I know it was so hard to get you here. I am going to ask you exactly what I want to know, and I know that that’s not how you want to spend your time.” [D16]

Others mentioned that clinicians did not ask them about their spiritual beliefs or needs, so no conversation about spirituality happened. Most of the caregivers who discussed spirituality with clinicians were pleased, and felt respected by the clinicians. However, there was variability in how clinicians engaged with caregivers in discussions about spirituality.

“Some of them [physicians] you can tell that, no, they don’t want to even think to hear anything like that [religion/spirituality], but some of them is very open and ready to listen.” [D03]

In 3 instances, when clinicians shared their R&S, caregivers felt a special connection and trust with them.

“I very much so believe in prayer… my dad and granddad are both ministers, and they brought an anointed prayer cloth. And I just asked that regardless of what the surgery was for, that that prayer cloth be left on him (the child) during the surgery. And he (doctor) assured me that it would be, and he assured me that he always prays before surgery… that really took away any concern that I had...I do believe that if it’s a true man of God, and he lays his hands on you, and he prays for you, and you really and truly believe that God is gonna heal you, then it’s gonna happen.” [D32]

In addition to physician-based spiritual support, some caregivers reported receiving Bibles or religious materials from nurses or other clinicians to demonstrate their support. Clinicians’ spiritual support was not universal; a few caregivers had negative experiences. One caregiver reported that her child’s therapist told her that she must have wanted and/or prayed for a sick child or God would not have given her one.

Theme 4. Overall, clergy and hospital chaplains played a major supportive role that caregivers found valuable, but their supportive role did not directly influence caregiver decision-making as it related to tracheostomy.

Most caregivers reported that their local clergy/chaplains visited the family in the hospital, and that they played a major supportive role overall. Chaplains prayed and led prayers for the child, parents, and physicians; included children in prayer lists; and performed religious rituals such as baptism. When clergy/chaplains prayed in the presence of the child, caregivers found their involvement valuable.

“She [chaplain] talked to me, we prayed together. We baptized her [child] and it really meant a lot to me…She helped out a lot.” [D18]

Clergy/chaplains strengthened caregivers’ faith in God while providing emotional support. Because of this, some caregivers mentioned that their faith in God deepened as they experienced their child’s illness. Other caregivers reported that they questioned their faith in God, and were angry with God – “Why did this happen to my child?”, “Why is God testing us?” In these situations, their clergy guided them and returned them to faith.

“So we’ve had some very frank conversations with [our pastor] about the struggles spiritually, about if you have a child that’s created by God and knit in the womb and You screwed mine up. Why did You do that to us? And it’s not even to us, it’s to [child].... there is a lot of emotion, a lot of guilt, a lot of anger.” [D16]

“…my faith is shaky a little bit sometimes when bad things happen to [child]. And my preacher’s always there to just kind of pull me back and remind me.” [D24]

In addition to emotional and spiritual support, clergy/chaplains provided support in the form of practical assistance (e.g., food, clothing, money) to families. One person stated that the clergy brought food “every single day” when the child was hospitalized. Another mentioned that the church held a fundraiser to support them.

Some caregivers sought out their own local clergy for guidance and involved them in the decision-making process, but overall, clergy/chaplains did not play a major role in the decision-making process:

“…it’s my baby, my choice. He [pastor] has two healthy kids, what’s he going to know?...if he had special needs kids, it would be a different story.” [D04]

“I don’t think a pastor, would persuade me one way or the other as far as getting the trach or not getting the trach. They wouldn’t have persuaded me spiritually. I think it was just a medical thing at the time. A medical decision.” [D25]

Caregivers mentioned that clergy/chaplains should offer support, comfort, and encouragement, and pray for everyone involved. They should be approachable, be good listeners, and get to know the families they serve, but should not persuade or provide medical advice or opinion.

“…the pastors are always praying. They don’t advise you. You have your faith and trust in God and you have to make the decision and ask God. The way they help us is praying and giving us words of encouragement and motivation.” [D40]

Overall, local clergy fulfilled the R&S roles that caregivers needed. Hospital chaplains were offered in many cases, but caregivers often refused them because they had their own spiritual support, did not desire the services of chaplains, were questioning their own faith, or were too overwhelmed to meet them. Involvement of chaplains was always a positive or neutral experience. The exception was D25, who felt that a chaplain represented imminent death, and sent the chaplain away quickly.

DISCUSSION

Our study shows R&S to be important to caregivers of CMC. This is consistent with previous studies reporting parents’ experiences of spiritual distress when their children are critically ill (Meyer et al., 2006). Our findings are also consonant with a study of adult patients in which 90% said that prayer may help with healing even though only 51% reported that they were religious (Ehman et al., 1999). We found R&S to be helpful for caregivers to make sense of, find meaning in, remain hopeful about, and cope with their children’s illnesses. This is consistent with prior studies reporting experiences of parents of critically ill children and reporting that religious practices, especially prayer, are helpful to those parents (Hexem et al., 2011; Meyer et al., 2006; Robinson et al., 2006). In a prior study, non-white parents were more religious and spiritual than their white counterparts (Knapp et al., 2011). We did not see any difference in our identified themes based on race/ethnicity. However, the 3 caregivers who mentioned that spirituality was not an important factor in decision-making were white and non-Hispanic.

In our study, spirituality was an important factor as caregivers made decisions about tracheostomy for their children. There are no prior studies about spirituality and pediatric tracheostomy decision-making. However, our findings are consistent with previous studies of other types of decisions in pediatrics (e.g., withdrawal of life support, pursuing bone marrow transplant etc.) (Carroll et al., 2012; Malcolm et al., 2019; Meyer et al., 2006; Superdock et al., 2018; Uveges et al., 2019). In a survey of bereaved parents, 73% said prayer and faith were important when making decisions at the end-of-life for their children (Robinson et al., 2006). Other studies found that R&S helped ease the decision-making process (Ellis & Campbell, 2004; Hexem et al., 2011). Parents reported that decision-making was easier when they felt as if they knew or accepted God’s will (Hexem et al., 2011).

We found that caregivers did not discuss their spiritual needs with clinicians. In prior studies, only a small proportion of parents felt that physicians should address their spiritual needs; this was higher for parents of critically ill children (Arutyunyan et al., 2018; Kelly et al., 2016). Parents are more comfortable discussing their spiritual needs with chaplains than with physicians (Arutyunyan et al., 2018). Integrating chaplains within medical teams could potentially help caregivers request spiritual services.

Clinicians did not inquire caregivers about their spiritual needs in our study. In a survey of adult patients, two-thirds mentioned that they would like to be asked about their R&S beliefs; only 15% said they were asked (Ehman et al., 1999). In a qualitative study of 17 pediatricians, participants said that they used their spiritual beliefs to support their patients and their families, and to deal with the emotional distress of pediatric deaths (Bateman & Clair, 2015). However, clinicians are often unaware of the importance of spiritual factors in decision-making for children (Superdock et al., 2018). For adult patients with cancer and their caregivers, faith was the second most important factor in their decisions to pursue chemotherapy; however, for oncologists, patients’ faith was not an important factor in decision-making (Silvestri et al., 2003). Although pediatricians agree that patient/family R&S are relevant to their clinical practice (Grossoehme et al., 2007; Siegel et al., 2002), most do not ask patients about these (Grossoehme et al., 2007). Spiritual needs screening is an area where important research has been conducted (Bahraini et al., 2020; King et al., 2017). Using spiritual needs screening questions in medical encounters (Catlin et al., 2008; Koenig, 2014) or using guidelines such as the ones developed by Davies and colleagues may be helpful in identifying and addressing spiritual factors during decision-making (Davies et al., 2002).

As found in other studies, we found performance of prayer and religious rituals to be the most important role of chaplains (Hexem et al., 2011; Lyndes et al., 2012; Michelson et al., 2013; Timmins et al., 2018); caregivers considered this to be beneficial. Some caregivers reported questioning their faith, feelings of anger and blame toward God, and rejecting religious beliefs or communities. Clergy/chaplains guided caregivers through spiritual distress. Prior studies show that parents welcome the support offered by clergy/chaplains (Donohue et al., 2017; Robinson et al., 2006). Interestingly, in our study, clergy/chaplains did not play a major role in the tracheostomy decision-making process. It is possible that chaplains play a greater role with end-of-life decisions than about decisions about LST. Chaplains consider guiding families in healthcare decisions to be one of their roles (L. B. Carey & J Cohen, 2009; Timmins et al., 2018; Wirpsa et al., 2019). However, clinicians may not be widely aware of the important role chaplains can play in the decision-making process (Galek et al., 2007). This discrepancy might be multifactorial - lack of availability of chaplains in hospitals, physicians being unaware of chaplaincy services, physicians not routinely eliciting spiritual needs, or lacking a mechanism of engaging chaplains (Cadge et al., 2011; L. B. Carey & J. Cohen, 2009; Feudtner et al., 2003; Timmins et al., 2018). Although caregivers did not identify a major role for clergy/chaplains in decision-making, they expected clergy/chaplains to support and comfort them during the process and not persuade or provide medical advice. Clergy/chaplains should understand the clinical context of tracheostomy decision-making and use their expertise to support families in the process. Some caregivers in our study perceived denying tracheostomy to be against God’s will. This is an interesting perception, although it is unclear how caregivers comprehend what God’s will is – pursuing a LST vs. allowing the natural course of illness. Engaging chaplains could be helpful in situations such as these when caregivers struggle with decision-making based on their faith.

Our study has limitations. This study is limited to a single institution. Care delivery and experiences may be different in other institutions or in other regions of the country. Most caregivers in our study ascribed to Christianity; the views and experiences of caregivers of other religions may be different. Our study is from one of the states in the U.S. that is in the “Bible Belt,” where people have strong religious beliefs. Results from other regions will probably differ. Caregivers’ recall of experiences may have been affected by their memory, and hence these findings are subject to recall bias. R&S content was richer in the later interviews than the first 20 interviews, probably because of the revision of the interview guide. While we believe participants’ beliefs were captured in early interviews through probing, we are not sure that everyone discussed their beliefs as deeply as they could have by offering specific questions to engage them in thinking specifically about personal beliefs. Quantitative studies are needed to find the extent to which R&S play a role in tracheostomy decision-making, and its relationship with decisional satisfaction. We excluded caregivers who rejected tracheostomies for their children. Understanding their perspectives would provide a more complete picture on the influences R&S may play in decision-making for pediatric tracheostomy.

CONCLUSION

R&S play an important role in caregivers’ decisions to pursue tracheostomy for their CMC and help them cope with their children’s illnesses. Although caregivers were comfortable discussing their spiritual needs with clinicians, many did not do so. Integrating chaplains within medical teams, screening caregivers’ spiritual needs using validated assessment tools, and educating clinicians about R&S as factors in decision-making and the role of clergy/chaplains, could address this gap. Clergy/chaplains should understand the important role they play in supporting caregivers cope with their children’s illnesses, and make decisions. They should also understand caregivers’ expectations about the role of clergy/chaplains in R&S and tracheostomy decision-making.

Abbreviations

CMC

children with medical complexity

LST

life-sustaining treatments

R&S

Religion and Spirituality

BCH

Brenner Children’s Hospital

PECP

Pediatric Enhanced Care Program