Perceptions of Hope Among Bereaved Caregivers of Cancer Patients Who Received Early Palliative Care: A Content and Lexicographic Analysis

Abstract

Background Oncologists’ fear of taking away hope from patients when proposing early palliative care (EPC) is a barrier to the implementation of this model. This study explores hope perceptions among bereaved caregivers of onco-hematologic patients who received EPC. Materials and Methods Open-ended questionnaires were administered to 36 primary caregivers of patients who received EPC (26 solid and 10 hematologic cancer patients; mean age: 51.4 years, range age: 20-74), at 2 cancer centers, 2 months to 3 years after a patient death. Definitions of hope in the caregivers’ narratives were analyzed through a directed approach to content analysis. Results were complemented with automated lexicographic analysis. Results Caregivers perceived hope mainly as resilience and as expectations based on what they were told about the patients’ clinical conditions. Their hope was bolstered by trusting relationships with the healthcare teams. EPC interventions were recalled as the major support for hope, both during the illness and after the death of the patient. The automated quantitative lexical analysis provided deeper insights into the links between hope, truth, and trust. Conclusions Our findings suggest that telling the truth about an incurable onco-hematologic disease and beginning EPC might be the combination of factors triggering hope in the setting of incurable cancer.

Gratitude among advanced cancer patients and their caregivers: The role of early palliative care

“…This may be explained by the fact that emotional support is mainly required when sharing information about the clinical situation. Healthcare professionals often fear removing hope from patients by revealing the truth about their condition ( 36 ). However, uncertainty often forces patients and caregivers to take into consideration all the possible scenarios, an extremely energy- and resource-consuming process.…”

“…High-quality communication is the means by which the palliative care team addresses patients’ and caregivers’ unmet physical, psychosocial, and spiritual needs in the long term, by taking charge early on. It is unlikely for patients with cancer to express spontaneously their doubts and fears, and they are grateful when their physicians are proactive in confronting distressing issues ( 35 , 36 ). Thus, it could be speculated that EPC could trigger, although unsolicited, an emotional state of gratitude in both the patient and the caregiver towards the palliative team and function as a positive psychological intervention.…”

Perceptions of Death Among Patients with Advanced Cancer Receiving Early Palliative Care and Their Caregivers: Results from a Mixed-Method Analysis

“…Our data reinforce the importance of effective communication strategies between physicians and patients/caregivers regarding illness, understanding, realistic expectations, and planning for the future. 1,45 This strategy can disclose patients' preferences about therapy and outcome, ensuring the possibility to solve doubts or questions regarding either palliative or disease-directed treatment options. 46 In this respect, the communication of death should be viewed as one of the central topics of physicians'/patients' discourse, in line with patients' and relatives' readiness and preferences.…”

Motivations and experiences of patients with advanced cancer participating in Phase 1 clinical trials: A qualitative study

“…This is defined by Herth as 'an inner power directed towards enrichment of being', and can be bolstered by trusting relationships with God, family or the healthcare team. [42][43][44] For patients with advanced cancer who nonetheless hold on to hope, perhaps hope can be iteratively reframed from an unrealistic hope to a more enduring kind of hope that extends beyond the expectation of a specific outcome. 37,43…”

“…2 In future palliative models, healthcare staff could be trained to widen their provision of hope by being present and demonstrating caring, conveying non-abandonment that is comforting and strengthening for the patient. 43,44,48 Through interactions between patients, families and the healthcare team, hope is collectively cultivated and expressed, and subsequently drawn on as a source of solidarity and support. 47 Even though palliative care was recognised as a source of support by participants in our study, they also felt that palliative care was not relevant to them.…”