Courageous conversations: Advance care planning and family communication

Title

Courageous conversations: Advance care planning and family communication

Creator

Wiener L; Zadeh BS; Battles H; Leonard S; Fasciano K; Heath C; Lyon M; Donovan KA;De Arruda Colli MNF; Pao M

Identifier

Publisher

Pediatric Blood and Cancer

Date

2018

Subject

follow up; cooperation; conference abstract; human; controlled study; adult; young adult; advance care planning; conversation; anxiety assessment; anxiety disorder; social media

Description

Background/Objectives: Discussing end-of-life (EoL) care is very challenging for adolescents and young adults (AYA) living with cancer. While many helpful documents exist to facilitate EoL conversations with adults, few resources exist to aid AYA in communicating their preferences for their care while they are living and how they want to be remembered after their death. Research completed at the National Cancer Institute, NIH LED to the development of an advance care planning (ACP) guide, Voicing My CHOiCESTM (VMC). The objectives of this study are to determine 1) the perceived helpfulness of VMC; 2) whether further revisions are needed, and 3) whether engaging in ACP using VMC is associated with reduced anxiety and/or improved communication about ACP with family. Design/Methods: AYA ages 18-39 (NCI definition of AYA) complete a baseline assessment of anxiety and communication. Participants review VMC and rate the helpfulness, stressfulness and changes needed for each page and complete 3 pages of the document. Assessment of anxiety and communication is repeated 1 month later. Results: Ninety AYA participated at baseline; 73 at follow up. Fifty-five percent had not previously discussed their wishes/preferences for EoL care with their family at baseline. Of those, 50% shared what they wrote in VMC at follow-up. For the 45% that had an initial conversation at baseline, 76% discussed what was written in the VMC. Among those who did not have the conversation, specific barriers were identified. Over 90% reported the VMC questions to be somewhat helpful/helpful/very helpful. Several changes were suggested, including remembrance on social media. Both general anxiety and anxiety around end of life planning decreased significantly (p<.01) between baseline and follow up. Conclusions: Introducing a developmentally appropriate ACP guide can facilitate EoL discussions with AYA family members. Our data suggests such discussions can lead to reduced generalized anxiety and anxiety specific to EoL planning.

Citation List Month

Oncology 2018 List

Collection

Citation

Wiener L; Zadeh BS; Battles H; Leonard S; Fasciano K; Heath C; Lyon M; Donovan KA;De Arruda Colli MNF; Pao M, “Courageous conversations: Advance care planning and family communication,” Pediatric Palliative Care Library, accessed July 24, 2021, https://pedpalascnetlibrary.omeka.net/items/show/16088.

Social Bookmarking