Providing clarity: communicating the benefits of palliative care beyond end-of-life support

Julie L Masters; Patrick W Josh; Amanda J Kirkpatrick; Mariya A Kovaleva; Harlan R Sayles

doi:10.1177/26323524241263109

Providing clarity: communicating the benefits of palliative care beyond end-of-life support

Palliat Care Soc Pract. 2024 Jun 24:18:26323524241263109. doi: 10.1177/26323524241263109. eCollection 2024.

Authors

Julie L Masters¹, Patrick W Josh², Amanda J Kirkpatrick³, Mariya A Kovaleva⁴, Harlan R Sayles⁵

Affiliations

¹ Department of Gerontology, University of Nebraska Omaha, 312 Nebraska Hall, 901 North 17 Street, Lincoln, NE 68588-0562, USA.
² Department of Gerontology, University of Nebraska Omaha, Omaha, NE, USA.
³ Creighton University College of Nursing, Omaha, NE, USA.
⁴ University of Nebraska Medical Center College of Nursing, Omaha, NE, USA.
⁵ University of Nebraska Medical Center College of Public Health, Omaha, NE, USA.

Abstract

Background: Palliative care affords numerous benefits, including improvements in symptom management, mental health, and quality of life, financial savings, and decreased mortality. Yet palliative care is poorly understood and often erroneously viewed as end-of-life care and hospice. Barriers for better education of the public about palliative care and its benefits include shortage of healthcare providers specializing in palliative care and generalist clinicians' lack of knowledge and confidence to discuss this topic and time constraints in busy clinical settings.

Objectives: Explore and compare the knowledge, values, and practices of community-dwelling adults 19 years and older from Nebraska about serious illness and end-of-life healthcare options.

Design: Secondary analysis of cross-sectional data collected in 2022 of 635 adults. We examined the fifth wave (2022) of a multiyear survey focusing on exploring Nebraskans' understanding of and preferences related to end-of-life care planning.

Methods: Descriptive statistics and chi-square tests to compare results between groups. Univariable and multivariable logistic regression analyses examine associations of variables as to knowledge of hospice and palliative care.

Results: While 50% of respondents had heard a little or a lot about palliative care, 64% either did not know or were not sure of the difference between palliative care and hospice. Those who reported being in poor health were not more likely to know the difference between palliative care and hospice compared to those reporting being in fair, good, or excellent health.

Conclusion: This study offers insight into the knowledge and attitudes about palliative care among community-dwelling adults, 19 years and older living in Nebraska. More effort is needed to communicate what palliative care is, who can receive help from it, and why it is not only for people at end of life. Advance care planning discussions can be useful in offering clarity.

Keywords: advance care planning; hospice care; palliative care; serious illness; supportive.