[Disabled child, care and ethical aspects]

Area of Science:

• Pediatrics
• Medical Ethics
• Developmental Pediatrics

Background:

• Children with disabilities require continuous, evolving care throughout their lives.
• Medical advancements lead to more disabled children surviving into adulthood, presenting new challenges.

Purpose of the Study:

• To outline the essential role of physicians in supporting disabled children and their families.
• To address the ethical considerations in managing long-term care, including the transition to adult services and end-of-life decisions.

Main Methods:

• The abstract emphasizes a holistic approach to care, integrating diagnosis, support systems, and multidisciplinary consultations.
• It highlights the importance of clear communication and shared decision-making with the child and family.

Main Results:

• Accurate diagnosis is crucial for developing a comprehensive life plan for disabled children.
• Effective support involves a doctor's knowledge of available resources, including childcare structures and financial aid.
• The transition from pediatric to adult care and end-of-life care planning are significant challenges.

Conclusions:

• Physicians play a pivotal role as advisors, advocating for disabled children's optimal autonomy.
• Ethical discussions regarding treatment continuation and "unreasonable obstinacy" are vital.
• Individualized end-of-life support planning, documented via a "remarkable patient" certificate, is essential.