DECISION-MAKING DIFFICULTIES IN SEVERELY NEUROPATHIC CHILDREN
Authors: Lima Jussara Silva , Lima Sarah Inessa Silva Resende , Lima João Gabriel Silva Resende 
Published: January 2025

The chapter addresses the challenges involved in decision-making for children with severe neuropathy, conditions characterized by irreversible brain damage that results in severe motor, cognitive, and sensory deficits. With advances in medicine, the life expectancy of these children has increased, but this has brought new clinical, ethical, and emotional dilemmas.

Palliative care is presented as essential to improve the quality of life of these children, promoting physical, psychological, social and spiritual support. The approach must be integrated from the diagnosis and throughout the entire course of the disease, prioritizing not only the relief of the child's suffering, but also support for their families.

Early diagnosis, combined with an understanding of the prognosis, is essential for planning care. During the course of the disease, it is common to identify a turning point, a moment when the child's clinical trajectory changes drastically, marking the beginning of a more pronounced decline. Recognizing this point allows the medical team and the family to reevaluate treatment goals, prioritizing interventions that respect dignity and quality of life.

The impacts of the neuropathic condition are analyzed in four main dimensions: clinical, psychological, social and spiritual. Clinically, complications include respiratory problems, eating disorders and refractory seizures, which often lead to recurrent hospitalizations. Psychologically, the emotional burden on families is significant, generating feelings of guilt, social isolation and burnout among caregivers. Socially, isolation and financial difficulties aggravate the impact of the condition, while the spiritual dimension addresses the search for meaning and emotional support to cope with the disease.

Decision-making for these patients involves complex bioethical dilemmas guided by principles such as beneficence, nonmaleficence, autonomy, and justice. The choice between prolonging life through invasive interventions or prioritizing palliative care requires transparent discussions between medical teams and families. The chapter proposes a multidisciplinary decision-making model that includes identification of the dilemma, information gathering, team discussion, implementation of decisions, and continuous adaptation to the child's needs.

Finally, proposals for improving the management of these cases are suggested, including: Professional training in palliative care and sensitive communication, reinforcement of public policies, such as the creation of specialized centers and financial benefits for families, promotion of support networks, strengthening interaction between families, caregivers and communities.

It is concluded that care for severe neuropathy should be comprehensive and centered on both the child and his/her family. The implementation of multidimensional strategies is essential to ensure dignity and quality of life, while public policies and clinical practices should be aligned with this objective.