“I Want to Live, Until I don't Want to Live Anymore”: Involving Children With Life-Threatening and Life-Shortening Illnesses in Decision Making About Care and Treatment

This paper examines question-response sequences, in which clinicians asked questions to child patients who appear to interact using means other than the verbal mode of communication.

Conversation Analysis methods were used to study questions in 46 paediatric palliative care consultations. These questions were directed towards children who observably used vocalisations and embodied modes of communication (e.g., gaze, gesture and facial expressions) but did not appear to use the verbal mode.

Most questions asked children either about their willingness and preferences for a proposed next activity, or their current feelings, experiences or intentions. Questions involved children by foregrounding their preferences and feelings. These questions occasioned contexts where the child’s vocal or embodied conduct could be treated as a relevant response.

This paper demonstrates how questions are used to involve children in consultations about their own healthcare, and how their views come to be understood by clinicians and family members, even when children interact using means other than the verbal mode of communication.

Questions can be asked of both children who do and do not verbally communicate. When asking questions, clinicians should be mindful of the modes of communication an individual child uses to consider how the child might meaningfully respond.

Admission of terminally ill patients into pediatric palliative care remains a challenge in Mexico and Latin America, despite the multiple benefits of early transfer. In this context the trajectories in search of health care of patients and caregivers have not been documented. Therefore, the objective of this study was to describe and analyze the experiences of primary caregivers and family members of pediatric patients in the palliative care unit of a Children's Hospital in Mexico, between October 19, 2019, and January 19, 2022. We used the framework of health pilgrimage, which comprises the transformative search of healing for patients, focusing on health barriers and the necessary displacement in search of care. With information obtained through interviews, we reconstructed the pilgrimages in search of health care navigating the Mexican healthcare system. Furthermore, we describe the experience of the primary caregiver accompanying the sick child during their journey to palliative care. We recount the adverse factors associated with this pilgrimage, such as the emotional and socioeconomic impact on primary and secondary caregivers.

Since the 1980s, there has been a growing recognition of the importance of palliative care for children with life-limiting and life-threatening conditions. Collaboration, regulatory frameworks, educational initiatives and a patient-centered approach have contributed to the advancement of PPC services for children with life-limiting conditions. In spite of this progress, pediatric palliative care in Argentina is not yet fully integrated into our health care system.

Decision-making during the end-of-life (EOL) phase for children with cancer is extremely difficult for parents. We synthesized the qualitative experiences of children with cancer, parents, and healthcare professionals (HCPs), and their social interactions during the EOL decision-making process in the pediatric oncology setting.

Meta-ethnography was used to conduct a systematic review and meta-synthesis. We searched four online databases to identify original studies published in English and Japanese and examined 21 relevant studies. Two Japanese reviewers discussed the differences/relationships and included studies that synthesized the translated qualitative findings. A conceptual model of social interactions was created.

We identified four themes regarding children's, parents', and HCPs' experiences: hope and confrontation with the child's death, guidance and support during uncertainty, awareness of being protected and having hope, and mutual unspoken integration of values.

These themes evince the experiences of children, parents, and HCPs during the EOL decision-making process and suggests a complex three-way social interaction model. While considering such distinctive social interactions during a child's EOL, this study revealed the sharing of prudent information and psychosocial support by HCPs. The findings indicate that hope and uncertainty are key elements for effectively understanding the experiences of children and parents and that EOL decision-making should not be rushed but should be supported by leaving room for uncertainty and acknowledging parents' emotional needs and fostering new hope. Further research into how hope can be further supported in situations that are rife with uncertainty is needed.

Communication with seriously ill children and their families differs from communication with seriously ill adult patients in important ways, most notably in that children do not have the authority to make medical decisions for themselves. Parents play an important role in determining what information is communicated to their child as well as how that information is delivered. Professional recommendations to engage the child at a developmentally appropriate level often require engagement of multiple linguistic and nonlinguistic approaches delivered with attention to child development by all members of the interprofessional team. Approaches that seek to engage parents (and children) in eliciting concerns about communication, the extent to which the child wants to participate in decision making, and utilizing the steps of shared decision making can be particularly successful. Many parents request clear and empathic information about their child’s condition, which should be discussed in the context of their goals for the child to avoid miscommunication. Clinical teams should prepare in advance what they will communicate with families to avoid conflicting or confusing information. Preparing parents and siblings with accurate information of a child’s impending death has been helpful in the bereavement process. Encouraging parents to share information with their child will reduce anxiety and fears even if the prognosis is poor, and parents rarely regret open discussions of death if their child is dying.