DECISION-MAKING DIFFICULTIES IN A CHILD WITH SEVERE NEUROPATHY

Abstract

The chapter addresses the challenges involved in decision-making for children with severe neuropathic 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 diagnosis and throughout the entire trajectory of the disease, prioritizing not only the relief of the child's suffering, but also the support of their families.

Early diagnosis, together with the understanding of the prognosis, is fundamental for care planning. During the course of the disease, it is common to identify a tipping point, a moment when the child's clinical trajectory changes dramatically, marking the beginning of a steeper 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 of 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 face 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 as invasive interventions or prioritizing palliative care requires transparent discussions between medical teams and families. The chapter proposes a multidisciplinary decision model, which includes identification of the dilemma, collection of information, team discussion, implementation of decisions and continuous adaptation to the child's needs.

Finally, proposals for improvement in 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 neuropathic patients should be comprehensive and centered on both the child and his or her family. The implementation of multidimensional strategies is essential to ensure dignity and quality of life, while public policies and clinical practices must be aligned with this objective.

DOI: https://doi.org/10.56238/sevened2024.039-016