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Between life and death: case study of a child with an indication for palliative care

Hospice & Palliative Medicine International Journal
Julia Marinho Rodrigues,1 Sara Fiterman Lima,2 Vanise Barros Rodrigues de Motta,3 Ivana Santos Vale,1 Luís Victor Moraes de Moura,1 Zeni Carvalho Lamy2


Objective: To promote reflection on the issues related to life and death that emerge from the
experiences of family members and professionals in the care of a child with no possibility
of disease-modifying treatments and a long period of hospitalization.
Methodology: A single case study of a situation marked by irreversible neurological
conditions incompatible with life, and prolonged hospitalization in a University Hospital,
offering obstinate care and palliative care. Semi-structured interviews were conducted with
professionals and life histories with family members. The statements were classified in
an attempt to grasp the nuclei of meaning and from there the empirical categories were
Results: Constructed report: Pandora, eight years old, victim of drowning when she was
one year and six months old. She was hospitalized for approximately six years. Her death,
despite being a natural fate, was for many a commotion. The following empirical categories
were extracted from the analysis of the interviews: 1) Difficult acceptance of death in
childhood, 2) Family reorganization, 3) Indication of palliative care, 4) Vicissitudes of work
in the face of death.
Conclusion: This case study showed that the decision making process at the end of life
is surrounded by many dilemmas, which make its action in care something that deserves
special attention and serious reflection.


palliative care at the end of life, paediatrics, death