Background

Little is known about underlying mechanisms through which early palliative care (EPC) improves multiple outcomes in cancer patients and their caregivers. The aims of this study were to qualitatively and quantitatively analyze patients’ and caregivers’ thoughts, emotional and cognitive perceptions about the disease prior and during the EPC intervention, and in the end of life, following the exposure to EPC.

Materials and methods

Seventy-seven advanced cancer patients and 48 caregivers from two cancer centers participated in semi-structured interviews. Their reports were qualitatively and quantitatively analyzed by the means of the grounded theory and a text-analysis program.

Results

Participants reported their past as overwhelmed by unmanaged symptoms, with detrimental physical and psychosocial consequences. The EPC intervention allowed a prompt resolution of symptoms and of their consequences; empowerment; an appreciation of its multidimensional approach, its focus on the person and its environment; the need for EPC for oncologic populations. Patients reported that conversations with the EPC team increased their acceptance of end of life and their expectation of a painless future. Quantitative analysis revealed higher use of Negative Affects (p<.001) and Biological Processes words (p<.001) when discussing the past; Agency words when discussing the present (p<.001); Positive Affects (p<.001), Optimism (p=.002), and Insight Thinking words (p<.001) when discussing the present and the future; and Anxiety (p=.002) and Sadness words (p=.003) when discussing the future.

Conclusion

Overall, participants perceived EPC to be beneficial. Our findings suggest that emotional and cognitive processes centered on communication underlie the benefits experienced by participants on EPC.

Implications for practice

By qualitative and quantitative analyses of the emotional and cognitive perceptions of cancer patients/caregivers about their experiences before and during EPC interventions, this study may help physicians/nurses to focus on the perception of the disease by patients/caregivers and the benefits of EPC, as a standard practice. The analysis of the type of words used by patients/caregivers provides a proxy for their psychological condition and support in tailoring an EPC intervention, based on individual needs. This study highlights that a relationship between the EPC team and patients/caregivers may rise as a therapeutic tool, allowing an increasing awareness and progressive acceptance of the idea of death.