"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.

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.

Patient-Reported Roles in Decision-Making Among Asian Patients With Advanced Cancer: A Multicountry Study.

Purpose. We investigated 1) perceived roles in decision-making among advanced cancer patients in 5 Asian countries 2) associations of patient characteristics with these roles, and 3) the association of perceived roles with quality of life and perceived quality of care. Methods. We surveyed 1585 patients with stage IV solid cancer. Multinomial logistic regressions were used to analyze associations of patient characteristics with decision-making roles. Multivariate regressions were used to analyze associations of decision-making roles with quality of life and care. Results. The most common perceived-role was no patient involvement. Most patients (73%) reported roles consistent with their preferences. Being male, nonminority, higher educated, aware of advanced cancer diagnosis, and knowledge of cancer diagnosis for ≥1 year were associated with higher levels of patient involvement in decision-making. Compared to no patient involvement, joint decision-making (together with physicians/family) was associated with higher social (ß = 2.49, P < 0.01) and spiritual (ß = 2.64, P < 0.01) well-being, and better quality of physician communication (ß = 9.73, P < 0.01) and care coordination (ß = 13.96, P < 0.01) while making decisions alone was associated with lower emotional (ß = -1.43, P < 0.01), social (ß = -2.39, P < 0.01), and spiritual (ß = -2.98, P < 0.01) well-being. Conclusions. Findings suggest that a substantial number of advanced cancer patients were not (and preferred not to be) involved in decision-making. Despite this finding, joint decision-making together with physicians/family was associated with better quality of life and care. Implications. Physicians should explain the benefits of shared decision making to patients and encourage participation in decision-making, while ensuring that patients feel supported and do not find decision-making overwhelming.

What does the informal caregiver of a terminally ill cancer patient need? A study from a cancer centre.

AIMS: To assess the needs of informal caregivers of terminally ill cancer patients. MATERIALS AND METHODS: Fifty four informal caregivers of patients registered in our palliative care service were interviewed 3-6 months after the death of the patient with the help of a semistructured questionnaire covering the physical, medical, psychological, social, and information domains. RESULTS: Most of the caregivers were middle aged and had no prior experience of care giving. The caregivers were satisfied by the information and medical support provided to them by their treatment team. Most had an "emergency plan". Caregivers had unmet needs including homecare, psychological support, and financial help. CONCLUSIONS: informal caregivers provide most of the nursing and psychological support to the patient. However, palliative care services need to recognize that the caregiver too may need psychological and technical support.