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Br J Cancer. 2021 Oct;125(8):1089-1099. doi: 10.1038/s41416-021-01512-9. Epub 2021 Aug 02.

Communication around palliative care principles and advance care planning between oncologists, children with advancing cancer and families.

British journal of cancer

Erica C Kaye, Cameka Woods, Kendall Kennedy, Srilakshmi Velrajan, Melanie Gattas, Tharwa Bilbeisi, Rachel Huber, Monica E Lemmon, Justin N Baker, Jennifer W Mack

Affiliations

  1. St. Jude Children's Research Hospital, Memphis, TN, USA. [email protected].
  2. St. Jude Children's Research Hospital, Memphis, TN, USA.
  3. Morehouse School of Medicine, Atlanta, GA, USA.
  4. Rhodes College, Memphis, TN, USA.
  5. University of Memphis, Memphis, TN, USA.
  6. Duke University, Durham, NC, USA.
  7. Dana-Farber Cancer Institute, Boston, MA, USA.
  8. Boston Children's Hospital, Boston, MA, USA.

PMID: 34341516 PMCID: PMC8505663 DOI: 10.1038/s41416-021-01512-9

Abstract

BACKGROUND: In medical oncology, palliative care principles and advance care planning are often discussed later in illness, limiting time for conversations to guide goal-concordant care. In pediatric oncology, the frequency, timing and content of communication about palliative care principles and advance care planning remains understudied.

METHODS: We audio-recorded serial disease re-evaluation conversations between oncologists, children with advancing cancer and their families across the illness trajectory until death or 24 months from last disease progression. Content analysis was conducted to determine topic frequencies, timing and communication approaches.

RESULTS: One hundred forty one disease re-evaluation discussions were audio-recorded for 17 patient-parent dyads with advancing cancer. From 2400 min of recorded dialogue, 119 min (4.8%) included discussion about palliative care principles or advance care planning. Most of this dialogue occurred after frank disease progression. Content analysis revealed distinct communication approaches for navigating discussions around goals of care, quality of life, comfort and consideration of limiting invasive interventions.

CONCLUSIONS: Palliative care principles are discussed infrequently across evolving illness for children with progressive cancer. Communication strategies for navigating these conversations can inform development of educational and clinical interventions to encourage earlier dialogue about palliative care principles and advance care planning for children with high-risk cancer and their families.

© 2021. The Author(s), under exclusive licence to Springer Nature Limited.

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