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

Abstract

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.

A qualitative service evaluation of patient and caregiver experiences of CAR-T therapy: Recommendations for service development and implications for palliative care teams

“…19 Patients with refractory DLBCL will usually meet several of these criteria at referral for CAR-T. Thoughtful communication around prognostication and goals of care should acknowledge uncertainty and explore the range of outcomes in parallel planning – simplified to ‘hoping for the best and preparing for the worst’. 1 A study of bereaved carers of immunotherapy patients highlighted a lack of preparedness for deterioration and late integration of palliative care, 6 despite evidence supporting specialist palliative care integration in similar populations. 20 The description of CAR-T as a ‘lifeline’, and meeting uncertainty with positivity raises important questions about how palliative care might be perceived by this group.…”

“…Collaborative palliative care has been suggested to meet the holistic needs of patients and carers. 6…”

“…11,12,14 Perspectives from patients who fail to respond or progress rapidly following treatment are lacking. 6…”

“…Collaborative palliative care has been suggested to meet the holistic needs of patients and carers. 6 Patient-reported outcomes (PROs) may be a better indicator of treatment toxicity than clinician-reported outcomes and are vital when evaluating treatment efficacy. 7,8 Longitudinal patient experience data in CAR-T therapy is limited.…”

Retrospective review of outcomes associated with metastatic melanoma patients treated with 1st‐line BRAF‐targeted therapy

“…Understanding the outcomes from 1st‐ and 2nd‐line therapy in the current, real‐world, BRAF ‐mutant melanoma population should help manage clinician and patient expectations and ensure better‐informed decision‐making regarding treatment options at a time when clinical practice is evolving rapidly and patient anxiety is high (Fox et al, 2020 ).…”