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. 2023 Oct 20;41(30):4739-4746.
doi: 10.1200/JCO.23.00641. Epub 2023 Aug 25.

Discussions About Goals of Care and Advance Care Planning Among Adolescents and Young Adults With Cancer Approaching the End of Life

Jennifer W Mack  1   2 , Colin Cernik  1 , Hajime Uno  1 , Lanfang Xu  3 , Cecile A Laurent  4 , Lauren Fisher  1 , Nancy Cannizzaro  5 , Julie Munneke  4 , Robert M Cooper  6 , Joshua R Lakin  7 , Corey M Schwartz  8 , Mallory Casperson  9 , Andrea Altschuler  4 , Lori Wiener  10 , Lawrence Kushi  4 , Chun R Chao  5
Affiliations

Discussions About Goals of Care and Advance Care Planning Among Adolescents and Young Adults With Cancer Approaching the End of Life

Jennifer W Mack et al. J Clin Oncol. .

Abstract

Purpose: Adolescents and young adults (AYAs) with cancer receive high rates of medically intensive measures at the end of life. This study aimed to characterize the prevalence and timing of conversations about goals of care and advance care planning among AYAs at the end of life as one potential influence on care received.

Methods: This was a review of electronic health data and medical records for 1,929 AYAs age 12-39 years who died after receiving care at one of three sites between 2003 and 2019, including documented conversations about goals of care and advance care planning, and care received.

Results: A majority of AYAs were female (54%) and White (61%); 12% were Asian, 8% Black, and 27% Hispanic. Most patients had documented discussions about prognosis (86%), goals of care (83%), palliative care (79%), hospice (79%), and preferred location of death (64%). When last documented goals of care were evaluated, 69% of patients wanted care focused on palliation; however, 29% of those with palliative goals spent time in the intensive care unit (ICU) in the last month of life, and 32% had multiple emergency room (ER) visits. When goals-of-care discussions happened earlier, >30 days before death, AYAs were less likely to receive chemotherapy in the last 14 days of life (P = .001), ICU care (P < .001), ER visits (P < .001), and hospitalizations in the last month (P < .001).

Conclusion: High rates of medically intensive measures among AYAs near the end of life do not appear to be the result of a lack of discussions about goals of care and advance care planning. Although some interventions may be used to support palliative goals, earlier discussions have potential to reduce late-life intensive measures.

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Conflict of interest statement

The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated unless otherwise noted. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/jco/authors/author-center.

Open Payments is a public database containing information reported by companies about payments made to US-licensed physicians (Open Payments).

Chun R. Chao

Employment: Kaiser Permanente

Research Funding: Merck (Inst)

No other potential conflicts of interest were reported.

Figures

FIG A1.
FIG A1.
Change over time in the proportion of patients with each discussion type between 2009 and 2019.
See this image and copyright information in PMC

References

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    1. Mack JW, Chen LH, Cannavale K, et al. : End-of-life care intensity among adolescent and young adult patients with cancer in Kaiser Permanente Southern California. JAMA Oncol 1:592-600, 2015 - PMC - PubMed

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