Beyond last words: Communicating with dying children who have trouble speaking

Abstract

PURPOSE: The majority of children whose brain tumors are resistant to treatment, lose their ability to speak and write due to progressive impairment and/or fatigue. Compromised communication can be emotionally devastating for the whole family, as children struggle to express, and caregivers work to decipher the child’s needs, hopes, fears and feelings. Although tools exist to support communication, children’s unpredictably changing function limits their accessibility and utility over time. This presentation will explore creative strategies that families used and adapted to engage in, and maintain meaningful communication with dying children who had trouble speaking. METHODS: Bereaved parents of 14 children were recruited from the Brain Tumour Program at the Hospital for Sick Children in Toronto. Their children, who had compromised communicative abilities, ranged in age from 4 to 16 years old when they died between 6 months and 3 years prior. Semi-structured interviews explored what and how they had communicated, and were digitally recorded, transcribed and coded using NVIVO software to facilitate thematic analysis. Parents’ priorities, insights and communication strategies were thematically organized to create an accessible, useful handbook to support family communication with dying children who have trouble speaking. RESULTS: Parents described a variety of tools that they used to support communication, emphasizing the need to introduce them before it became too difficult for the child to learn to use a new tool. Given the progressive, unpredictable functional changes these children experienced, all families ultimately relied on asking children a series of increasingly specific “yes” or “no” questions. Although this required immense patience, it allowed them to communicate about any topic, unrestricted by the contents of a particular tool. Most importantly, parents explained that whereas tools could be disruptive, asking these questions maintained the personal, intimate nature of their interactions. CONCLUSIONS: In response to parents’ urging, our team developing “Staying Connected: a guide for families when a sick child has trouble communicating” based on their experiences with communicative and psychosocial issues as their children’s abilities changed. Among the tools included in this book is a map to guide parents as they learn to use “yes” or “no” questions to understand their children’s needs, fears and feelings. Clinicians and family members can use these tools to maintain communication and connection when a child has trouble speaking, at any point along the trajectory of illness. Research Implications: Anecdotal evidence suggests that caregivers’ distress may be lessened when they have a plan for communication, should their child lose the ability to speak. Future research could explore how this handbook, including experiences and advice from other parents as well as the communication strategies, benefits caregivers of children with brain tumours. Children’s quality of life is likely also improved by these opportunities to communicate, to feel heard and comforted by loved ones. These benefits are likely to extend to children and families living with other life-threatening illnesses, or new communication challenges, meriting further exploration. Clinical Implications: Learning to use “yes” and “no” questions enables families to maintain precious, intimate connections, however it requires patience and practice. Families need clinicians to prepare them for the possibility that the child may struggle to communicate, so that they have as much time and capacity as possible, to learn new communication strategies. Developing a rapport early on allows us to open up a dialogue with families about communicating with the child; this dialogue can focus initially on the diagnosis and treatment, and evolve into discussions about life, death, and their own care and wishes at the end of life.