"Building palliative care capacity in cancer treatment centres: a participatory action research".

INTRODUCTION: There is a significant lack of palliative care access and service delivery in the Indian cancer institutes. In this paper, we describe the development, implementation, and evaluation of a palliative care capacity-building program in Indian cancer institutes. METHODS: Participatory action research method was used to develop, implement and evaluate the outcomes of the palliative care capacity-building program. Participants were healthcare practitioners from various cancer institutes in India. Training and education in palliative care, infrastructure for palliative care provision, and opioid availability were identified as key requisites for capacity-building. Researchers developed interventions towards capacity building, which were modified and further developed after each cycle of the capacity-building program. Qualitative content analysis was used to develop an action plan to build capacity. Descriptive statistics were used to measure the outcomes of the action plan. RESULTS: Seventy-three healthcare practitioners from 31 cancer treatment centres in India were purposively recruited between 2016 and 2020. The outcome indicators of the project were defined a priori, and were audited by an independent auditor. The three cycles of the program resulted in the development of palliative care services in 23 of the 31 institutes enrolled in the program. Stand-alone palliative care outpatient services were established in all the 23 centres, with the required infrastructure and manpower being provided by the organization. Morphine availability improved and use increased in these centres, which was an indication of improved pain management skills among the participants. The initiation and continuation of education, training, and advocacy activities in 20 centres suggested that healthcare providers continued to remain engaged with the program even after the cessation of their training cycle. CONCLUSION: This program illustrates how a transformational change at the organizational and individual level can lead to the development of sustained provision of palliative care services in cancer institutes.

End of life experiences of patients with advanced cancer in Myanmar: Results from the APPROACH study.

BACKGROUND: Access to palliative care services is essential for attaining universal health coverage for patients with a terminal cancer. Despite this, many patients with advanced cancer in low-income countries, such as Myanmar, suffer at the end of life (EOL) due to little or no access to palliative care. However, actual evidence on EOL experiences of cancer patients in Myanmar is lacking. This paper aims to describe various dimensions of EOL experiences among patients with an advanced cancer from the largest public hospital in Myanmar. METHODS: We surveyed 195 patients with stage IV cancer seeking care from outpatient oncology clinics to assess their quality of life, pain severity, pain medications taken, quality of communication with doctors, nursing care and health care coordination, and desire to end life sooner. We assessed socioeconomic status (SES) differences in each patient outcome using separate multivariate linear/logistic regressions. RESULTS: Forty-one percent of the patients in our sample reported that they wish their life would end sooner. Low SES cancer patients had significantly worse quality of life, reported poor health care coordination and were more likely to report severe pain compared to high SES cancer patients visiting the same hospital. CONCLUSION: To improve quality of life and pain management and to reduce EOL distress among patients with advanced cancer, there is a pressing need to develop and invest in hospital and community-level palliative care services in Myanmar.

Place of Care at End of Life: What Factors Are Associated With Patients' and Their Family Members' Preferences?

BACKGROUND: Few Asian studies have elucidated factors influencing patients and their family members on their preferred place of care at the end of life. This pilot study describes the perceptions of Singaporean patients with cancer and their family members that affect their choices in place of care. METHODOLOGY: Patients with cancer and their family members were surveyed at a tertiary hospital in Singapore. This convenience sample was recruited from April to July 2012. RESULTS: Fourteen pairs of patients and their family members (N = 28) were recruited. A majority of patients (64.3%) and family members (71.4%) were found to have a preferred place of care at the end of life. Of the respondents who expressed a preference (n = 19), 88.9% of patients and 90.0% of family members named "home" as their preferred place of care. Quality of care at home was rated "good" or "excellent" by all patients and 85.7% of family members. CONCLUSION: Home is the most favored choice among patients and family members who have a preferred place of care.

The practice of nondisclosure of advanced cancer diagnosis in Singapore: a continuing challenge.

INTRODUCTION: The traditional family-centred approach to cancer management in Singapore often leads to nondisclosure of diagnosis to patients with advanced cancer. This study aimed to determine the rate of nondisclosure to such patients in Singapore, and compare it against the rate of nondisclosure to patients' families and that of a study conducted in 1992. METHODS: Consecutive patients (n = 100) with advanced cancer who were referred to a palliative home care service in 2004 were studied retrospectively. Comparison between the 1992 and present study groups was performed using chi-square and Fisher's exact tests. Multivariate logistic regression was applied to patient age, Eastern Cooperative Oncology Group (ECOG) performance status, gender and ethnicity to identify factors associated with nondisclosure. RESULTS: The overall nondisclosure rate among patients with advanced cancer was 23% (23/100), compared to only 2% (2/99) among their families (p < 0.001). The nondisclosure rates among ECOG 0-2 and ECOG 3-4 patients were 11% (7/62) and 42% (16/38), respectively (p < 0.001). There was no significant improvement in the nondisclosure rate among ECOG 3-4 patients when compared to the 1992 study (p = 0.94). It was more likely for nondisclosure to occur among patients aged ≥ 70 years (p < 0.001; odds ratio [OR] 14.77, 95% confidence interval [CI] 3.68-59.26) and those with poor ECOG performance status (p = 0.019; OR 4.0, 95% CI 1.26-12.73). There was no significant association between nondisclosure and gender or ethnicity (p > 0.05). CONCLUSION: Disclosure of diagnosis to patients with advanced cancer remains a challenge in Singapore. The relationship between nondisclosure and advanced age, as well as nondisclosure and poor ECOG performance status, needs to be clarified with further studies.