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Exploring unmet concerns in home hospice cancer care: Perspectives of patients, informal caregivers, palliative care providers, and family physicians

Published online by Cambridge University Press:  08 April 2024

Eran Ben-Arye Open the ORCID record for Eran Ben-Arye [Opens in a new window] ,
Noah Samuels ,
Yael Keshet ,
Miri Golan ,
Erez Baruch  and
Jamal Dagash
Eran Ben-Arye*
Affiliation:
Integrative Oncology Program, The Oncology Service and Lin Medical Center, Clalit Health Services, Haifa, Israel Faculty of Medicine, Technion-Israel Institute of Technology, Haifa, Israel
Noah Samuels
Affiliation:
Center for Integrative Complementary Medicine, Shaare Zedek Medical Center, Faculty of Medicine, Hebrew University of Jerusalem, Jerusalem, Israel
Yael Keshet
Affiliation:
Department of Sociology, Western Galilee College, Akko, Israel
Miri Golan
Affiliation:
Integrative Oncology Program, The Oncology Service and Lin Medical Center, Clalit Health Services, Haifa, Israel
Erez Baruch
Affiliation:
Integrative Oncology Program, The Oncology Service and Lin Medical Center, Clalit Health Services, Haifa, Israel
Jamal Dagash
Affiliation:
Integrative Oncology Program, The Oncology Service and Lin Medical Center, Clalit Health Services, Haifa, Israel Palliative Care – Home Care Hospice, Clalit Health Services, Haifa, Israel
*
Corresponding author: Eran Ben-Arye; Email: eranben@netvision.net.il
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Abstract

Objectives

The study examines perspectives of patients in home hospice care; their informal caregivers; palliative health-care providers (HCPs); and family physicians, all regarding patients’ unmet needs and quality of life (QoL)-related concerns.

Methods

Participants from all 4 groups were approached within 2 months after the patient’s admission to the home hospice care unit. Participants completed Edmonton Symptom Assessment Scale (ESAS) and Measure Yourself Concerns and Wellbeing (MYCAW) questionnaires, for patient’s QoL-related concerns. Qualitative analysis of short narratives was conducted using ATLAS.ti software for systematic coding.

Results

In total, 78 participants completed the study questionnaires: 24 patients, 22 informal caregivers, 22 palliative HCPs, and 11 family physicians. Informal caregivers gave higher scores (i.e., greater severity) than patients for fatigue on ESAS (p = 0.009); and family physicians lower scores than patients for ESAS drowsiness (p = 0.046). Compared with patients, palliative HCPs gave higher scores for patient emotional-spiritual concerns (77.2% vs. 41.7%, p = 0.02); lower scores for gastrointestinal concerns (p = 0.048); and higher scores for overall function (p = 0.049). Qualitative assessment identified a gap between how patients/informal caregivers vs. palliative HCPs/family physicians regard emotional-spiritual themes, including discussing issues related to death and dying.

Significance of results

The findings of the present study suggest that exploring a multifaceted cohort of home hospice patients, informal caregivers, palliative HCPs, and family physicians may provide insight on how to reduce communication gaps and address unmet needs of patients, particularly regarding emotional and spiritual concerns.

Conclusions

While the 4 groups were similar in their scoring of patient QoL-related concerns, there were discrepancies for some concerns (e.g., patient fatigue) and expectations regarding the need to discuss emotional and spiritual concerns, including on death and dying. Educational initiatives with programs providing training to all 4 groups may help bridge this gap, creating a more open and collaborative hospice care environment.

Keywords

Palliative carehospiceintegrative medicineoncologyfamily medicinecommunication
Type
Original Article
Information
Palliative & Supportive Care , First View , pp. 1 - 9
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Copyright
© The Author(s), 2024. Published by Cambridge University Press.

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