End-of-Life Care in Hematology: Update From Australia

Abstract

The purpose of this article is to provide recent findings on the perceptions and experiences about end-of-life care for individuals with a hematological malignancy. A qualitative design based on a series of open-ended interviews and one focus group was utilized to explore and document the experience of survivorship from the perspective of adult patients diagnosed with a hematological malignancy. Fifty participants (n = 26 male; n = 24 female) were interviewed representing the major hematological diagnostic groups: Multiple Myeloma, Lymphoma, and Leukemia. The interviews and focus group were recorded, transcribed verbatim, coded, and thematically analyzed. The findings presented are from the participants' experiences with end-of-life care. The findings indicated that those fortunate enough to know about the benefits of palliative care are more likely to access palliative care during end-of-life care. However, for many hematology patients there are still problems with timely referrals to the palliative system. Within the context of an Australian research program, the findings provide a useful “snapshot” of current issues for Australian hematology patients and their families.

KEYWORDS:

• hematology
• palliative care
• qualitative research
• social work

Acknowledgments

The author would like to thank Ms. Barbara Hartigan and Ms. Maryanne Skarparis from the Leukaemia Foundation of Queensland, and the IPP-SHR team for their contribution to the study—including Mr. Hamish Holewa, Ms. Nicole Rawson-Huff, Ms. Bo McGrath, Mr. Michael Bouwman, Ms. Mary Anne Patton, and Mrs. Emma Phillips. The author would like to acknowledge CQUniversity where the data was collected and Griffith University, where the analysis and write-up was completed.