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Clinicians' Understanding of Preferences and Values of People with Hematological Malignancies at the End of Life: Concurrent Surveys.

Publication ,  Journal Article
Button, E; Cardona, M; Huntley, K; Gavin, NC; LeBlanc, TW; Olsen, A; Smith, M; Yates, P
Published in: J Palliat Med
September 2022

Background: People with hematological malignancies can deteriorate rapidly to a terminal event and have variable levels of engagement when transitioning to palliative and end-of-life care. Objectives: To describe end-of-life care values and preferences of people with hematological malignancies and explore whether these align with hematology clinicians' perceptions. Design: Two matched anonymous quantitative cross-sectional surveys explored: (1) patients' values and preferences around manner and timing of discussions regarding life expectancy and prognosis, involvement in decision making, and concurrent integration of palliative care with active treatment; and (2) clinicians' perceptions of their patients' values and preferences in relation to prognostic information. Settings/Participants: Concurrent online national surveys of people with hematological malignancies known to the Leukemia Foundation of Australia, and clinicians in Australia with membership to the Hematology Society of Australia and New Zealand. Results: Five hundred nine (38% response rate) patients (median age 64 [min 20, max 89, interquartile range 56-70]) and 272 clinicians (21% response rate) responded to the survey. If their health was deteriorating, most patients wanted honest prognostic and life expectancy information (87%); welcomed involvement in decision making (94%); felt they would be comfortable talking to the treating team about the possibility of death (86%); and would be comfortable seeing someone from a specialist palliative care team (74%). Clinicians generally underestimated most of these responses. Conclusion: Although our findings indicate that most people believe they would be comfortable discussing prognosis, life expectancy, and wishes at the end of life, clinicians were largely unaware of their preferences. This highlights the need to embed values clarification in routine care for each patient and family.

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Published In

J Palliat Med

DOI

EISSN

1557-7740

Publication Date

September 2022

Volume

25

Issue

9

Start / End Page

1386 / 1397

Location

United States

Related Subject Headings

  • Terminal Care
  • Patient Preference
  • Middle Aged
  • Humans
  • Hematologic Neoplasms
  • Gerontology
  • Death
  • Cross-Sectional Studies
  • 4205 Nursing
  • 4203 Health services and systems
 

Citation

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Chicago
ICMJE
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Button, E., Cardona, M., Huntley, K., Gavin, N. C., LeBlanc, T. W., Olsen, A., … Yates, P. (2022). Clinicians' Understanding of Preferences and Values of People with Hematological Malignancies at the End of Life: Concurrent Surveys. J Palliat Med, 25(9), 1386–1397. https://doi.org/10.1089/jpm.2021.0490
Button, Elise, Magnolia Cardona, Kathryn Huntley, Nicole C. Gavin, Thomas W. LeBlanc, Avalon Olsen, Michael Smith, and Patsy Yates. “Clinicians' Understanding of Preferences and Values of People with Hematological Malignancies at the End of Life: Concurrent Surveys.J Palliat Med 25, no. 9 (September 2022): 1386–97. https://doi.org/10.1089/jpm.2021.0490.
Button E, Cardona M, Huntley K, Gavin NC, LeBlanc TW, Olsen A, et al. Clinicians' Understanding of Preferences and Values of People with Hematological Malignancies at the End of Life: Concurrent Surveys. J Palliat Med. 2022 Sep;25(9):1386–97.
Button, Elise, et al. “Clinicians' Understanding of Preferences and Values of People with Hematological Malignancies at the End of Life: Concurrent Surveys.J Palliat Med, vol. 25, no. 9, Sept. 2022, pp. 1386–97. Pubmed, doi:10.1089/jpm.2021.0490.
Button E, Cardona M, Huntley K, Gavin NC, LeBlanc TW, Olsen A, Smith M, Yates P. Clinicians' Understanding of Preferences and Values of People with Hematological Malignancies at the End of Life: Concurrent Surveys. J Palliat Med. 2022 Sep;25(9):1386–1397.
Journal cover image

Published In

J Palliat Med

DOI

EISSN

1557-7740

Publication Date

September 2022

Volume

25

Issue

9

Start / End Page

1386 / 1397

Location

United States

Related Subject Headings

  • Terminal Care
  • Patient Preference
  • Middle Aged
  • Humans
  • Hematologic Neoplasms
  • Gerontology
  • Death
  • Cross-Sectional Studies
  • 4205 Nursing
  • 4203 Health services and systems