Anna Collins1,2, Sue-Anne McLachlan2,3, Jennifer Philip1,2,4. 1. 1 Palliative Care, St Vincent's Hospital Melbourne, Fitzroy, VIC, Australia. 2. 2 Department of Medicine, The University of Melbourne, Parkville, VIC, Australia. 3. 3 Medical Oncology, St Vincent's Hospital Melbourne, Fitzroy, VIC, Australia. 4. 4 Victorian Comprehensive Cancer Centre, Melbourne, VIC, Australia.
Abstract
BACKGROUND: Despite evidence for early integration of palliative care for people with advanced cancer and their families, patterns of late engagement continue. Prior research has focused on health professionals' attitudes to palliative care with few studies exploring the views of patients and their carers. AIM: To explore initial perceptions of palliative care when this is first raised with patients with advanced cancer and their families in Australian settings. DESIGN: Cross-sectional, prospective, exploratory qualitative design, involving narrative-style interviews and underpinned by an interpretative phenomenological framework. SETTING/PARTICIPANTS: Purposively sampled, English-speaking, adult patients with advanced cancer ( n = 30) and their nominated family caregivers ( n = 25) recruited from cancer services at a tertiary metropolitan hospital in Melbourne, Victoria, Australia. RESULTS: Three major themes evolved which represent the common initial perceptions of palliative care held by patients with advanced cancer and their carers when this concept is first raised: (1) diminished care, (2) diminished possibility and (3) diminished choice. Palliative care was negatively associated with a system of diminished care which is seen as a 'lesser' treatment alternative, diminished possibilities for hope and achievement of ambitions previously centred upon cure and diminished choices for the circumstances of one's care given all other options have expired. CONCLUSION: While there is an increasing move towards early integration of palliative care, this study suggests that patient and caregiver understandings have not equally progressed. A targeted public health campaign is warranted to disentangle understandings of palliative care as the 'institutional death' and to reframe community rhetoric surrounding palliative care from that of disempowered dying to messages of choice, accomplishment and possibility.
BACKGROUND: Despite evidence for early integration of palliative care for people with advanced cancer and their families, patterns of late engagement continue. Prior research has focused on health professionals' attitudes to palliative care with few studies exploring the views of patients and their carers. AIM: To explore initial perceptions of palliative care when this is first raised with patients with advanced cancer and their families in Australian settings. DESIGN: Cross-sectional, prospective, exploratory qualitative design, involving narrative-style interviews and underpinned by an interpretative phenomenological framework. SETTING/PARTICIPANTS: Purposively sampled, English-speaking, adult patients with advanced cancer ( n = 30) and their nominated family caregivers ( n = 25) recruited from cancer services at a tertiary metropolitan hospital in Melbourne, Victoria, Australia. RESULTS: Three major themes evolved which represent the common initial perceptions of palliative care held by patients with advanced cancer and their carers when this concept is first raised: (1) diminished care, (2) diminished possibility and (3) diminished choice. Palliative care was negatively associated with a system of diminished care which is seen as a 'lesser' treatment alternative, diminished possibilities for hope and achievement of ambitions previously centred upon cure and diminished choices for the circumstances of one's care given all other options have expired. CONCLUSION: While there is an increasing move towards early integration of palliative care, this study suggests that patient and caregiver understandings have not equally progressed. A targeted public health campaign is warranted to disentangle understandings of palliative care as the 'institutional death' and to reframe community rhetoric surrounding palliative care from that of disempowered dying to messages of choice, accomplishment and possibility.
Authors: Benjamin Chosich; Marjorie Burgess; Arul Earnest; Michael Franco; Fiona Runacres; Leeroy William; Peter Poon; Jaclyn Yoong Journal: Support Care Cancer Date: 2019-06-19 Impact factor: 3.603
Authors: Carla Reigada; Carlos Centeno; Edna Gonçalves; Maria Arantzamendi Journal: Int J Environ Res Public Health Date: 2021-05-17 Impact factor: 3.390
Authors: Jennifer Philip; Roslyn Le Gautier; Anna Collins; Anna K Nowak; Brian Le; Gregory B Crawford; Nicole Rankin; Meinir Krishnasamy; Geoff Mitchell; Sue-Anne McLachlan; Maarten IJzerman; Robyn Hudson; Danny Rischin; Tanara Vieira Sousa; Vijaya Sundararajan Journal: BMC Health Serv Res Date: 2021-05-27 Impact factor: 2.655