Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2023 Jan;14(1):101374.
doi: 10.1016/j.jgo.2022.09.003. Epub 2022 Sep 10.

Advance care planning in older patients with acute myeloid leukemia and myelodysplastic syndromes

Marissa LoCastro  1 , Chandrika Sanapala  2 , Jason H Mendler  3 , Sally Norton  4 , Rachelle Bernacki  5 , Thomas Carroll  6 , Heidi Klepin  7 , Erin Watson  8 , Jane Liesveld  9 , Eric Huselton  10 , Kristen O'Dwyer  11 , Andrea Baran  12 , Marie Flannery  13 , Benzi M Kluger  14 , Kah Poh Loh  15
Affiliations

Advance care planning in older patients with acute myeloid leukemia and myelodysplastic syndromes

Marissa LoCastro et al. J Geriatr Oncol. 2023 Jan.

Abstract

Introduction: Older patients with acute myeloid leukemia (AML) and myelodysplastic syndromes (MDS) have worse survival rates compared to younger patients, and experience more intense inpatient healthcare at the end of life (EOL) compared to patients with solid tumors. Advance care planning (ACP) has been shown to limit aggressive and burdensome care at EOL for patients with AML and MDS. The purpose of this study was to better understand ACP from the perspective of clinicians, older patients with AML and MDS, and their caregivers.

Materials and methods: We conducted semi-structured interviews with 45 study participants. Interviews were audio-recorded and transcribed. Open coding and focused content analysis were used to organize data and develop and contextualize categories and subcategories.

Results: Guided by our specific aims, we developed four themes: (1) The language of ACP and medical order for life-sustaining treatment (MOLST) does not resonate with patients, (2) There is no uniform consensus on when ACP is currently happening, (3) Oncology clinician-perceived barriers to ACP (e.g., patient discomfort, patient lack of knowledge, and lack of time), and (4) Patients felt that they are balancing fear and hope when navigating their AML or MDS diagnosis.

Discussion: The results of this study can be used to develop interventions to promote serious illness conversations for patients with AML and MDS and their caregivers to ensure that patient care aligns with patient values.

Keywords: Acute myeloid leukemia; Advance care planning; Hematologic malignancy; Myelodysplastic syndromes; Qualitative study.

PubMed Disclaimer

Conflict of interest statement

Declaration of Competing Interest Dr. Loh has served as a consultant to Pfizer and Seattle Genetics and has received honoraria from Pfizer.

References

    1. Shallis RM, Wang R, Davidoff A, Ma X, Zeidan AM. Epidemiology of acute myeloid leukemia: Recent progress and enduring challenges. Blood Rev 2019;36:70–87. - PubMed
    1. Zeidan AM, Shallis RM, Wang R, Davidoff A, Ma X. Epidemiology of myelodysplastic syndromes: Why characterizing the beast is a prerequisite to taming it. Blood Rev 2019;34:1–15. - PubMed
    1. Lerch E, Espeli V, Zucca E, Leoncini L, Scali G, Mora O, et al. Prognosis of acute myeloid leukemia in the general population: data from southern Switzerland. Tumori 2009;95(3):303–10. - PubMed
    1. Alibhai SM, Leach M, Minden MD, Brandwein J. Outcomes and quality of care in acute myeloid leukemia over 40 years. Cancer 2009;115(13):2903–11. - PubMed
    1. Verhoef MJ, de Nijs EJM, Ootjers CS, Fiocco M, Fogteloo AJ, Heringhaus C, et al. End-of-Life Trajectories of Patients With Hematological Malignancies and Patients With Advanced Solid Tumors Visiting the Emergency Department: The Need for a Proactive Integrated Care Approach. Am J Hosp Palliat Care 2020;37(9):692–700. - PMC - PubMed