What is it about?
Spanish speaking adolescents living with cancer are interested in being involved in decision-making about their own end of life care, if the worse were to happen. However, this was not feasible during COVID, as families had other priorities.
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Why is it important?
Spanish speaking teens wth cancer are underserved. This co-created Spanish adaptation of FAmily CEntered (FACE) pediatric advance care planning is important to giving vulnterable teens with cancer from Spanish speaking families access to pediatric advance care planning. FACE-TC Spanish was adpated to (1) give teens a voice in their own end of life care, (2) help their families "break the ice" so they could know what their child wanted if the worse were to happen, and (3) provide an extra level of support to their clinicians, so that the first conversation about goals of care for end of life does not occur in the intensive care unit.
Perspectives
FACE-TC Spanish pediatric advance care planning was not feasible during the COVID pandemic and during a time in which immigrants were being deported by the United States government. Also, the idea of adolescents and families participating in end-of-life decision making was radical to Spanish speaking families who were recent immigrants, i.e. of course the doctor should make these decisions. Safety from Covid and deportation were family priorities.
Maureen Lyon
Children's National Hospital
Read the Original
This page is a summary of: Health disparities: Barriers to building evidence for effective palliative end-of-life care for spanish-speaking teens with cancer., Clinical Practice in Pediatric Psychology, September 2021, American Psychological Association (APA),
DOI: 10.1037/cpp0000417.
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