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Palliative care in the context of immune and targeted therapies: A qualitative study of bereaved carers’ experiences in metastatic melanoma
Journal article   Peer reviewed

Palliative care in the context of immune and targeted therapies: A qualitative study of bereaved carers’ experiences in metastatic melanoma

Jennifer A Fox, John P Rosenberg, Stuart Ekberg and Danette Langbecker
Palliative Medicine, Vol.34(10), pp.1351-1360
2020
DOI: https://doi.org/10.1177/0269216320916154
Appears in  UniSC Diversity and Inclusion Research Collection
url
https://doi.org/10.1177/0269216320916154View
Published Version

Abstract

qualitative research caregivers immunotherapy melanoma terminal care UniSC Diversity Area - Life Stages
Background: Immune and targeted therapies continue to transform treatment outcomes for those with metastatic melanoma. However, the role of palliative care within this treatment paradigm is not well understood. Aim: To explore bereaved carers' experiences of immune and targeted therapy treatment options towards end of life for patients with metastatic melanoma. Design: An interpretive, qualitative study using a social constructivist framework was utilised. Interviews were recorded, transcribed and analysed using grounded theory methods. Setting/participants: Participants (n= 20) were bereaved carers of patients who had received some form of immune and/or targeted therapy at one of three Australian metropolitan melanoma treatment centres. Results: Carers struggled to reconcile the positive discourse around the success of immune and targeted therapies in achieving long-term disease control, and the underlying uncertainty in predicting individual responses to therapy. Expectations that immune and targeted therapies necessarily provide longer-term survival were evident. Difficulty in prognostication due to clinical uncertainty and a desire to maintain hope resulted in lack of preparedness for treatment failure and end of life. Conclusion: Immune and targeted therapies have resulted in increased prognostic challenges. There is a need to engage, educate and support patients and carers to prepare and plan amid these challenges. Educational initiatives must focus on improving communication between patients, carers and clinicians; the differences between palliative and end-of-life care; and increased competency of clinicians in having goals-of-care discussions. Clinicians must recognise and communicate the benefit of collaborative palliative care to meet patient and family needs holistically and comprehensively.

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