Abstract and Introduction
Abstract
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.
Introduction
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, 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 concerns and that many children understand their prognosis whether they are told of their illness or not. One study found that 19% of families with children with terminal illness acknowledged the child's impending death to them. Discussions of PPC decisions, such as decisions around advance care, may be delayed in families dealing with this sensitive issue. Although children may want to talk about it, 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.
One of the immediate needs of PPC children is to know that caregivers will always be there with them. Despite many caregivers' beliefs, communicating with children about their impending death or that of siblings may actually decrease psychological harm to the child. 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. 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.
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 fears as advised by some researchers. This is suggested to prevent PPC patients and siblings from being left out of conversations that could help them. New Zealand hosts a multicultural population, with just under 15% of the country and 9% to 10% of Auckland being of Maori decent. 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. 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, 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.