TY  -  JOUR
AU  -  Podda, Marta
AU  -  Clerici, Carlo Alfredo
AU  -  Nigro, Olga
AU  -  Schiavello, Elisabetta
AU  -  Forzini, Giuseppe
AU  -  Martini, Cinzia
AU  -  Caraceni, Augusto
AU  -  Massimino, Maura
T1  -  Adolescents and young adults with severe intellectual disabilities dying of pediatric cancers in hospices for adults: a case report
PY  -  2023
Y1  -  2023-07-01
DO  -  10.1726/4092.40858
JO  -  Rivista Italiana di Cure Palliative
JA  -  Riv It Cure Palliative
VL  -  25
IS  -  3
SP  -  141
EP  -  143
PB  -  Il Pensiero Scientifico Editore
SN  -  2532-9790
Y2  -  2026/04/30
UR  -  http://dx.doi.org/10.1726/4092.40858
N2  -  Summary. Adolescents and young adults (AYAs) with cancer are patients with special, complex needs. Home seems to be the best place at the end of their life, partly because there are few hospices dedicated to this age group. Individuals with intellectual disabilities (ID) have unique personalities, traits and needs, and many rely on some kind of support throughout their lives, and especially at the end of life. These pages describe a lesson learned from caring for a young adult with a metastatic germinal tumor and severe ID due to neurological disease, who was managed in the terminal phase by pediatric oncologists in cooperation with a hospice for adults. Terminally-ill adolescents and young adults require a great commitment, however, and a multidisciplinary team is needed. Such a complex situation deserved even more attention: operators (and nurses in particular) unused to caring for young patients with severe ID can suffer from stress because they lack confidence in their ability to deal with such cases. To assure continuity of care between our pediatric oncologists and a palliative care team, an ad hoc virtual team was created to cope with this difficult situation. There is no standard way to handle the terminal phase of a young patient with severe ID, whose management at home may not always be feasible. Though our hospital’s hospice is intended for adults, it proved an excellent setting for the multidisciplinary team involved in managing the terminal phase and the emotional demands of such a complex case.
ER  -