Differences in end-of-life communication for children with advanced cancer who were referred to a palliative care team

Abstract

Background: There is a general consensus that involving a specialized palliative care team in the care of children with advanced cancer can help optimize end-of-life communication; however, how this compares to standard oncology care is still unknown. We aimed to determine whether there was an association between specialist palliative care involvement and improved end-of-life communication for children with advanced cancer and their families.

Procedure: We administered questionnaires to 75 bereaved parents (response rate 54%). Outcome measures were presence or absence of 11 elements related to end-of-life communication.

Results: Parents were significantly more likely to receive five communication elements if their child was referred to a palliative care team. These elements are: discussion of death and dying with parents by the healthcare team (P<0.01); discussion of death and dying with child by the healthcare team when appropriate (P < 0.01); providing parents with guidance on how to talk to their child about death and dying when appropriate (P < 0.01); preparing parents for medical aspects surrounding death (P = 0.02) and sibling support (P = 0.02). Children were less likely to be referred to a palliative care team if they had a hematologic malignancy.

Conclusions: Children who receive standard oncology care are at higher risk of not receiving critical communication elements at end of life. Strategies to optimize end-of-life communication for children who are not referred to a palliative care team are needed.

Keywords: end of life; pediatric oncology; supportive care.