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Primary Caregivers’ Decisions Around Communicating About Death With Children Involved in Pediatric Palliative Care

Gaab, Erin M. PhD; Owens, R. Glynn DPhil, DipClinPsych (BPS), AFBPsS; MacLeod, Roderick D. PhD, MBChB, MMedEd, DRCOG, FRCGP, FAChPM

Journal of Hospice & Palliative Nursing: August 2013 - Volume 15 - Issue 6 - p 322–329
doi: 10.1097/NJH.0b013e318293dc20
Research and Practice: Partners in Care Series
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Communication about the end of a child’s life is highly sensitive. Although children may be aware of their prognoses when they are dying, primary caregivers do not always acknowledge the impending deaths to them. How primary caregivers communicate (or avoid communicating) with their children who have life-limiting illnesses about their (or their siblings’) illness and impending death may be determined by several factors. A qualitative, semistructured interview study of 19 bereaved and nonbereaved primary caregivers of pediatric patients in palliative care was conducted and interpreted using inductive thematic analysis. Primary caregivers offer various reasons for discussing or refraining from discussion with their children that relate to preparing and protecting them. Primary caregivers communicate with their children about death to prepare them (by acknowledging, enabling, and teaching) or avoid the topic to protect them (and their relationships, emotions, and perceptions). When deciding whether to open discussions about their child’s impending death, caregivers draw on parenting skills that parallel those developed while making other decisions for their children.

Erin M. Gaab, PhD, is Postdoctoral Researcher in Health Psychology, University of California, Merced.

R. Glynn Owens, DPhil, DipClinPsych (BPS), AFBPsS, is Professor, Department of Health Psychology, University of Auckland, New Zealand.

Roderick D. MacLeod, PhD, MBChB, MMedEd, DRCOG, FRCGP, FAChPM, is Professor of Palliative Care, University of Sydney, Australia.

Address correspondence to Erin M. Gaab, PhD, Health Sciences Research Institute, University of California, Merced, 5200 Lake Rd, Merced, California 95340 (egaab@ucmerced.edu).

The authors have no funding or conflicts of interest to disclose.

This research was conducted while Drs Gaab and MacLeod were with the Departments of Health Psychology and General Practice and Primary Health Care, respectively, at the University of Auckland, New Zealand.

Generally, a child’s impending death is argued to be a topic caregivers do not wish to discuss. Reluctance to discuss death may reflect a number of emotional and ethical factors,1,2 including a natural tendency in families of children with terminal illnesses to avoid breaking bad news, conflicting with the caregivers’ usual role as nurturer and protector, and being unsure of how to communicate effectively regarding such issues. If there is uncertainty regarding the trajectory of the illness, caregivers may find it difficult to judge the timing of any such discussions, making procrastination likely. This article aims to uncover New Zealand primary caregivers’ reasons for discussing their children’s deaths with them and their siblings. It seeks to translate this information to health care professionals, family members, and friends who support families involved in pediatric palliative care (PPC).

Research conducted mostly outside New Zealand has indicated that it may be difficult for caregivers to recognize their terminally ill children’s developmental needs and concerns3 and that many children understand their prognosis whether they are told of their illness or not.4 One study found that 19% of families with children with terminal illness acknowledged the child’s impending death to them.5 Discussions of PPC decisions, such as decisions around advance care, may be delayed6 in families dealing with this sensitive issue. Although children may want to talk about it,7 most families avoid the discussion, believing that children cannot understand the magnitude of their illness and are better off spared the burden of such knowledge. Conversely, it could be argued that keeping children’s diagnoses from them may result in isolation, distrust, distress, or poor psychosocial adjustment.8-10

One of the immediate needs of PPC children is to know that caregivers will always be there with them.11 Despite many caregivers’ beliefs, communicating with children about their impending death or that of siblings may actually decrease psychological harm to the child.12 In a Swedish study, none of 147 bereaved parents of children with cancer who talked about death with their children regretted it. However, of the 258 parents who did not, 69 parents (27%) regretted not talking.13 The reasons underpinning their decision whether to discuss death with their children may be associated with particular cultural factors. In the Swedish study, regret at not discussing was associated with the belief that the children knew that they were dying. If this is also the case in other countries, it may be useful to know whether children know more about death than their caregivers believe they do. One study found that New Zealand caregivers slightly underestimated their 5- to 7-year-old children’s accuracy when answering questions about death as a biological concept.14

Pediatric palliative care specialists in New Zealand generally advise parents to be cautiously honest at the end of a child’s life to maintain trust and address fears10 as advised by some researchers.15 This is suggested to prevent PPC patients and siblings from being left out of conversations that could help them.16 New Zealand hosts a multicultural population, with just under 15% of the country17 and 9% to 10% of Auckland18 being of Maori decent.19 This unique culture may influence residents’ beliefs about death. Many children in Maori families are included in death practices and supported by whanau (extended family) networks that help them cope with grief resulting from their losses.20 Many Maori children may be taught by their parents using religious and cultural ideologies to explore death concepts with their children. Consistent with this, the Starship Children’s Hospital PPC team in Auckland, New Zealand,21 encourages open communication with most families they care for.

Such observations lead us to desire further insight about why parents in New Zealand speak or avoid speaking with children about the end of life. In order to adapt to the modern New Zealand context of diverse family structures, participants included all primary caregivers of PPC patients (grandparents, aunts, and uncles, as well as mothers and fathers). The current literature lacks New Zealand caregivers’ reasons for talking or not talking with their children about their impending deaths. When deciding whether to approach their children, current PPC patients’ caregivers may benefit from drawing on the reasons other caregivers considered in their approaches.

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METHODS

The purposive sample of participants was recruited through organizations that care for families with children receiving PPC. The PPC team at Starship Children’s Hospital was the first organization contacted by the researcher. Team members oversee the provision of care to PPC patients and their families in Auckland and provide advice to the rest of New Zealand. The PPC team provided the researcher with a letter of support and agreed to serve as the link between the researcher and potential participants. Three other organizations were identified by the PPC team to be consulted: the Child Cancer Foundation and Heart Children Foundation in Auckland and “True Colours” in Hamilton, New Zealand. Family support or other professionals (approximately 12 individuals) from the 4 organizations agreed to assist with the recruitment of participants between February 2010 and February 2011. Introduction to the research by these trusted individuals and organizations undoubtedly helped to circumvent perceived barriers associated with potential “gatekeepers” (parents, clinicians and others who cared for the children).

The interview (Table 1) was designed with the help of the Starship PPC team and Maori and Asian advisors. It aimed to lead parents gently into the topic of discussing/concealing the impending death of the child with the PPC patient and his/her siblings. Insights into the perceptions of death that caregivers believed their children held and how they communicated were sought as well as advice on approaching families for future research.

TABLE 1

TABLE 1

The aims of the research were given in the information sheet to ensure cultural sensitivity and to respect ethical guidelines. They were notified of the study as their child was receiving palliative care or approximately 6 months or more after the death of their child, as suggested by a study of bereaved parents following the death of their child.22 Ethical approval was granted by the Northern X Regional Ethics Committee, reference no. 4529. No competing financial interests exist.

Adults who considered themselves “primary caregivers” of verbal children receiving PPC or who had received PPC prior to their death were invited to participate. The majority of the families were approached first by the PPC team, who identified them as English-speaking and within an appropriate age range and cognitive ability. Over the course of the year, the principal investigator (PI) received consent from the organizations to approach 15 families and attempted initial contact via phone calls. Two of the families were unresponsive to the initial calls. The PI met with the remaining 13 families (21 caregivers) who consented to having the study explained to them. Nineteen of the 21 caregivers approached by the PI agreed to take part in the study. Data collection ceased once the data were perceived as having reached a point of saturation.

The recruiting team counselors (mostly from the PPC team) spoke directly about the research with the families and delivered brochures outlining the intent and aims of the study to them. The researcher met with the primary caregivers at their homes to explain the rationale and the procedural elements of the study and gain consent.

Consenting participants were interviewed in their homes or workplaces according to convenience. Interviews, which lasted 25 to 93 minutes, were audio recorded. Once collected, the interviews were transcribed and analyzed (Table 2) by the PI, discounting differences between the bereaved and nonbereaved as well as male and female data sets and applying Braun and Clarke’s23 method of inductive thematic analysis. The transcripts were stored in NVivo (QSR International, Melbourne, Australia), a computer program for qualitative analysis.24

TABLE 2

TABLE 2

The transcribed interviews were read multiple times, and initial ideas for topics commonly repeated within and between them were recorded. Quotations that related to the research topic (communicating about the patients’ deaths or avoiding communication) were coded on a semantic level without interpreting the caregivers’ statements. A few of the same quotations were allocated different codes (eg, “talking about death” or “avoiding talking about death”). The coding procedure is outlined in Table 2. The researcher repeatedly asked, “Why did [caregiver] speak/avoid speaking with [child] about their impending death?” Once analyzed without discrimination, the sex and bereavement status were noted in this article to clarify contextual factors and ensure the transparency and credibility of the data.

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FINDINGS

Nineteen primary caregivers of PPC patients were interviewed about their experiences in PPC. The participants from 11 families (Table 3) had children with illnesses including cancer (n = 10), heart conditions (n = 5), muscular dystrophy (n = 3), and another illness (n = 1). The participants were identified as New Zealand European (n = 9), Maori (n = 6), other European (n = 3), and Pacific Islander (1).

TABLE 3

TABLE 3

The son/daughter patients ranged from 3 to 18 years old (at the time of the interview or the time of death) with a median age of 14 (SD, 1.37) years. Caregivers were also asked about conversations with their other children, who ranged in developmental stage from barely verbal to 18 years old.

Most primary caregivers were able to give reasons for their decision, whether it was to speak to or avoid speaking to the child about death. Those who avoided speaking with children about death indicated reasons relating to protecting their children, whereas those who spoke about death did so in reference to preparing them. Their statements are categorized according to 3 distinct themes within each category (Figure 1).

FIGURE 1

FIGURE 1

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Reasons for Avoiding Talking About Death Described by Primary Caregivers

Primary caregivers avoided talking about the child’s mortality with their child patients and their siblings to protect them.

I needed to protect them from it. Toward the end, the last week, I did say to [sibling], “[Patient] is really not... doing very well.... I don’t know how it’s going to go.” With [patient], I didn’t... acknowledge it toward the end.... We needed to protect him. (Bereaved mother 1)

Caregivers gave various reasons for not talking about death with children.

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Avoiding Negative Changes in Relationships

Sometimes, caregivers avoided the topic to protect relationships between individuals involved with their families, perhaps in an effort to protect social norms. They did this as per others’ recommendations, because children did not want to discuss death or the conversation was not needed, or to avoid being the bearer of bad news. Avoiding conversations that might provoke negative changes in relationships, which hinged on the advice of others, was mentioned by several of the interviewed caregivers. One mother whose family lived in a different city drew on them for advice and support:

When I knew that [my son] was going to die.... I spoke with my family and I e-mailed my brother and sister and mum.... Then she got hold of all of them, and they decided as a family that we should protect [my son] from... you know.... Although we were advised not to, but the family thought that we should protect him from it because he didn’t need to know, and why distress him? They felt that under no circumstance should [my son] be told that he’s dying. (Bereaved mother 1)

It is apparent, then, that as the source of emotional and practical support, families sometimes advised primary caregivers to preserve relationships by avoiding conversations about death.

When caregivers perceived that their children did not wish to speak about death, the caregivers did not generally push conversation. Most caregivers mentioned the child’s reluctance to speak about death as a reason for not raising the topic. Another mother expressed her adolescent’s reluctance to communicate with her:

He didn’t ask questions. He would turn up, shed one tear, look the other way, and then just back to business as usual.... Put on the TV; it’s fine.... And [patient] wasn’t stupid, and I think he knew. But if there was any opportunity for him to ask, he didn’t. He didn’t like us talking about it.... He didn’t want to know. He just wanted to get on. (Bereaved mother 2)

The primary caregiver herself perceived that her son did not want to talk about his illness with hers.

About half of the caregivers felt that the conversation was not necessary because the child already understood all the necessary information. Many caregivers spoke of avoiding directly raising the topic of their child’s impending mortality because they did not want to tell them in the wrong way or to be the bearers of bad news:

Mother 7: “[Father 2] and I sat down and decided, ’cause we both work with people all the time, we don’t want to be the bearers of the bad news. We would rather be the supporters.”

Father 2: “The supporters. There, you know.”

Mother 7: “The carers.”

Father 2: “Because in a child’s mind, quite often he will think, ‘You’re the one that brought me the bad news.’”

Without professional help, the breaking of bad news may be too difficult for primary caregivers. Caregivers avoided talking about prognoses to protect their relationships and those between patients, siblings, and others.

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Avoiding Negative Changes in Emotions

All of the interviewed caregivers who spoke of avoiding conversing about death wanted to protect their families from changing emotions. The caregivers’ reasons are broken into groups focusing on preventing negative emotional reactions, losing hope, and blame or regret. One mother expressed her frustration over her inability to prevent her son from getting upset:

I’m sort of finding this the hardest, having to see as [my son] gets older and lives longer, he gets hurt more. As his mum, you want to protect them from being hurt as much as possible and you can’t.... I’m finding it harder now than ever because... I can’t control, you know, his feelings anymore. (Mother 3)

Primary caregivers may see the disclosure of information a way to regulate their children’s emotions. Others avoided mentioning the possibility of the child’s death to the patient or sibling to keep them from losing hope. One mother actively avoided the topic of death at critical times, such as when the child was undergoing treatment:

I try to reassure [sibling] that everything will go back to normal, eventually. Just, we’ve got to get through this... surgery, and... it’s going to take us a little while, but... we are going to go back to normal. (Mother 4)

Another factor caregivers mentioned for not talking was wanting to protect others from blame. A small number of participants mentioned that they did not talk about the disease because they did not want to bring out feelings of guilt or blame in their children or others.

I didn’t want family members... to think, “Did they give it to him?” I didn’t want people to look at [father] and think, “He gave it to him.” I didn’t want to be having to explain that I don’t have [disease transmission mechanism]. (Bereaved mother 5)

Caregivers expressed concern over their children’s emotional states. Many avoided disclosing sensitive information from them to keep them stable.

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Avoiding Negative Changes in Perceptions

Concerns about provoking negative emotions and changing social norms were not the only reasons caregivers avoided talking about their children’s prognoses. Protecting children from the unknown, from stigma about death, and from losing their innocence were reasons discussed by many caregivers who avoided speaking about death. Like those concerned with protecting social roles and relationships, caregivers who wanted to protect their children from the unknown were generally not familiar with how to explain the outcome of their child’s disease.

The perceptions of others were concerning to some caregivers. Many of the caregivers wanted to protect their children from being stigmatized and to prevent unnecessary lifestyle changes.

It was just easier not to [talk about dying], you know, to everyone going around him. Friends, uh, you know. You know, because I didn’t want to change them, walking around, looking like a funeral. (Bereaved mother 2)

Many caregivers mentioned wanting to protect children’s innocence as well.

You don’t want your kids to have that fear. You don’t want your kids to lose their innocence.... You don’t want them to worry about nothing when they’re little” (Bereaved mother 5).

Caregivers avoided talking about death with children to avoid negative changes in relationships, emotions, and/or perceptions.

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Reasons for Talking About Death Described by Primary Caregivers

Despite acknowledging reasons for avoiding the topic, many primary caregivers spoke with children to prepare them for death.

We couldn’t have just told them... and then left it. We’ve had to carry on with the journey and walk with them every day and teach them every day and read the Bible every day.... It’s about life. It’s about living. (Father 1)

They spoke for several reasons (Figure 2).

FIGURE 2

FIGURE 2

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Acknowledging

Many caregivers were aware that patients and siblings knew the reality of the situation. The patients could sometimes sense this through physical symptoms or the actions of others around them. Some wanted to give them closure or avoid the guilt of lying to or tricking them by hiding the truth. Most families made it a policy to always communicate openly and honestly with their children. Many also simply answered children’s questions about their illnesses without denying the child’s death or forcing the information on them.

It was confirmation, because... it was hard for her to run. I remember [patient] having that sense of confirmation. She knew that something was going on before with her body... yeah, she understood it all. (Father 1)

Caregivers who spoke about death or prognosis with their children acknowledged their children’s expertise and knowledge of their own status.

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Enabling

Caregivers who enabled their children to prepare for death facilitated their children’s strengths. Some spoke with them to allow them to work through their issue and gain peace of mind before the death. Some caregivers hoped that granting their children permission to die, allowing them to shift from hoping for a cure to hoping for an enhanced quality of life, and allowing them to be upset and release their emotions would help them. Many confirmed a belief in the positive effect of expressing hope, willpower, and strength, which enable children to accept the comfort from their families and speak, share, and learn how to cope with dying.

She understood... that she was going to die. We just didn’t know when. Take every day as it comes.... Aw, she was a fighter; she did have her downs. And then she would just really have her ups. (Bereaved mother 6)

Caregivers hoped that open communication (through telling the children that their illness was terminal) would help in the making of more informed decisions. Armed with knowledge about their prognoses, children were enabled to make decisions around how to react to the situation around their families, including the patients themselves.

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Teaching

Most caregivers believed that preparing children for their own and other children’s questions before the death was the best way to ensure that they would not feel overwhelmed with information all at once.

It just makes them have an appreciation. When they’re my age; when they’re old, they’re never, ever going to forget their brother and the love that they had for him. And they’re always going to have an appreciation for people that aren’t so fortunate. I let them be involved in everything ’cause I think it makes them better kids, better people. (Bereaved mother 5)

Caregivers coached their children through their illnesses by talking to them. They expressed hope that speaking with their children about death would teach them to cope with difficult experiences, understand the causes of their difficult situations, answer their questions, and appreciate the less fortunate. Lessons to be learned were clearer when caregivers included their children in being educated about their diseases.

Most caregivers wanted to prepare their children by talking about the child’s mortality through acknowledging the reality of the condition, teaching them to cope with it, and enabling them to navigate through their situations.

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LIMITATIONS

This study is limited by several factors. Participation by caregivers was entirely voluntary; the study was constrained by the participants’ openness and ability to talk about experiences. This study’s focus may have elicited conversations within families relating to death before caregivers were interviewed. Some caregivers may not wish to answer the interview questions for personal, cultural, or religious reasons.14 Two primary caregivers who were referred by the PPC team but chose not to participate acknowledged a “need for the research” and apologized. Although this study provides insight into the minds of the primary caregivers of terminally ill children, the impact of their decisions on their children remains unknown. Direct, qualitative data from children with terminal illness would complement this research.

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DISCUSSION

Caregivers’ comments regarding communication at the end of life indicate competing desires to protect and prepare children. Whether communicating about the child’s impending death with them is a means by which they might achieve those aims is a question each individual caregiver assesses differently. Although some caregivers avoided speaking about death with their children to protect their childhood innocence, children may know more about death than they expect.14

Primary caregivers value protecting their children and see hiding information from them as one way of doing this. Such findings are consistent with previous research connecting parents’ reluctance to discuss their children’s impending death to a number of factors.1 Although caregivers’ stages in the disease process were not analyzed in depth, it might be noted that bereaved caregivers tended to speak more positively about talking with their children about death than avoiding discussions.

Today, health professionals generally believe that many children, including young children, know when they are dying3 and may or may not want to talk about it.7 One of PPC children’s immediate wishes is knowing that caregivers will always be there with them.11 The present results suggest that if these wishes are to be achieved, the apparently conflicting aims of preparation and protection may need to be considered. Similar concerns have in the past been raised regarding communication with adults about diagnoses such as cancer,25 but it is now widely recognized that the provision of information to those who want it can be associated with positive psychological outcomes. Although children are not miniature adults, it may still be possible to reconcile the conflicting aims by exploring the possibility that possessing information may serve to reduce anxiety and uncertainty without eliminating hope.

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Practice Implications

The recommendations provided by PPC specialists to caregivers may be a wise and logical start. Being cautiously honest at the end of a child’s life is certainly likely to facilitate the maintenance of trust between families and address children’s fears.10 Communicating with children at the end of life may be different than caregivers expect, so health care providers should take an individualized approach when advising and supporting families.

Cultural understandings of death in multicultural New Zealand may have influenced some caregivers’ decisions to use death as a teaching point for their children. New Zealand children’s inclusion in death practices and the subsequent support from extended family networks20 may influence their decisions to speak about death with children. Participants’ references to the child’s process as a journey, the Bible as an instructional tool, and their inclusion of their extended families in the decision-making process were likely influenced by cultural norms.

Although the benefits of approaching families on individualized bases cannot be denied, it might also be argued that they should have access to the experiences of other families. Those working on the frontlines with families including primary caregivers themselves may be able to make more informed decisions about how to approach the topic of death with their children from reading about the experiences of others. Professional help in the breaking of bad news may be welcome by primary caregivers. The apparently conflicting aims of preparation and protection may be achieved by caregivers’ consideration of the relationships, emotions, and perceptions, which a discussion may change as well as the discussions’ utility in acknowledging, teaching, and enabling them. If presented with these reasons early in the stages of their illness, caregivers may be able to draw on the conclusions others in similar positions came to.

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Future Research

Although this study provides some insight into the minds of the primary caregivers of terminally ill children, different courses of illness may require different approaches. The ages of children may also matter. These factors have yet to be explored. This research is also limited in that it cannot replace direct, qualitative data from children with terminal illness themselves. We are currently exploring themes arising from the voices of children in families of PPC patients and their death understandings and desires for information or less conversation.

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ACKNOWLEDGMENTS

The authors thank the brave caregivers for participating with compassion and interest; the authors acknowledge the advisory support of the Starship PPC team, Claire Cartwright, and Andrew Thompson.

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Figure

Figure

Keywords:

end-of-life care; family care; families with chronically Ill young people; parenting; palliative care; young people

© 2013 by The Hospice and Palliative Nurses Association.