“I want to live, but …” the desire to live and its physical, psychological, spiritual, and social factors among advanced cancer patients: evidence from the APPROACH study in India

Abstract

Background The limited access to palliative care resources along with the social stigma around cancer largely explains the poor quality of life (QoL) of Indian advanced cancer patients. As advanced cancer patients with poor QoL often harbour a desire for hastened death (DHD), it is imperative to understand factors affecting DHD, or the desire to live (DTL) among advanced cancer patients in India. We aim to examine the relationship between DTL and physical, psychological, spiritual, and social factors measuring patients’ QoL alongside their awareness of their late cancer stage. Methods We surveyed 200 patients from a tertiary cancer hospital in India to collect their DTL, awareness of cancer stage, demographic characteristics, and standardized measures for patients’ QoL. We used a linear probability regression model to quantify the association between these factors and patients’ DTL among the final sample of 192 patients with no missing information for the variables of interest. Results Among the various domains affecting cancer patients’ QoL, we found that the pain severity score (ranging from 0 to 10) and psychological distress score (ranging from 0 to 42) are negatively associated with the DTL. One point increase in each score reduced the DTL by 2.2% (p < 0.05) and 0.7% (p < 0.05), respectively. Our results also showed that patients whose perceived socio-economic status (SES) is poor have a 16% (p < 0.05) lower probability of DTL, compared to those with higher SES (lower middle class, upper middle class, and wealthy). Controlling for caste, religion, gender, age, marital status and years of education, we found psychological distress is statistically higher among patients belonging to this bottom SES. Conclusions We found that pain severity, psychological distress and perceived low SES are negatively associated with the desire to live in advanced cancer patients. Future research should focus on developing interventions to improve physical pain and psychological distress, particularly for patients who are socially and economically disadvantaged.

Advanced Cancer in Young Adults (YAs): Living in a Liminal Space

“…It is common among adults of any age to struggle to live within the dichotomy of double awareness ( Umaretiya et al, 2023 ; Avery et al, 2020a ). However, the inconsistent cues our participants perceived receiving from healthcare providers may be more common among the YA population ( Joad et al, 2022 ).…”

The bittersweet experiences of instilling hope in a deprived community: A qualitative study on the provider perspectives of Home-Based Palliative Care in Kerala

“…They work in a resource-poor environment and at times feel helpless to deal with the complex socio-economic and medical problems the clients come across. 17 Meta-analytical estimations by Gómez-Urquiza et al reported a high level of burnout (24-30%) among palliative care providers with high in uence on depersonalization, emotional exhaustion, and low personal accomplishment and suggests an improvement in the working environment. 18 Compared to the palliative care providers of an institution, community health care workers suffer more con icts because of their limited training, workload and lack of access to resources.…”