ABSTRACT
Objectives: Stroke survivors have palliative care needs in multiple domains, which are overlooked. Accurate estimation of these is pivotal in ensuring proper rehabilitation and planning interventions to improve quality of life (QoL). We aimed to assess the palliative care needs of stroke patients in various domains in a structured manner at the neurology service of a tertiary care center in South India. Materials and Methods: Seventy-five consecutive stroke patients presenting to the neurology service were recruited over six months with assessment across various domains including symptom burden, physical domain, activities of daily living (ADL), psychiatric/psychological domain, and QoL at baseline and with follow-up at one month and three months. Results: Despite improvement in the conventional stroke impairment measures among stroke survivors, there were significant unmet needs across various domains; 98% were severely or entirely dependent on ADL at three-month follow-up; and pain and insomnia were the most frequent (33% incidence) troubling symptoms encountered. There were substantial mental health related issues. The QoL measurement tools employed were the stroke impact assessment questionnaire (SIAQ), a novel tool and the World Health Organization Quality Of Life Brief Version (WHO-QOL-BREF). SIAQ scores at one month showed that 19 patients (42.22%) had their QoL severely affected, and 36 patients (80%) showed the same trend at the three-month follow-up. WHO-BREF scores showed that 27 (62%) did not report good QoL, and 32 (73%) were found not to be satisfied with their health at a one-month follow-up. Conclusion: There is a significant burden of unmet palliative care needs among stroke survivors in India across various domains.
ABSTRACT
The unexpected lockdown announced by the Government of India in March 2020 in response to the pandemic left the coastal community in Kerala deprived of not only essential amenities but also healthcare. Some poverty-ridden, over-crowded coastal regions had been declared as critical containment zones with severe restriction of movement, adding to their vulnerability. People with serious health-related suffering (SHS) in this community required urgent relief. A group of educated youth in the community joined hands with a non-governmental organisation specialised in palliative care (PC) services and strived to find the best possible solutions to address the healthcare needs in their community. This paper reports the collaborative activities done during the pandemic in the coastal region and compares the activities with steps proposed by the WHO to develop community-based PC (CBPC). By engaging, empowering, educating, and coordinating a volunteer network and providing the required medical and nursing support, the programme was able to provide needed services to improve the quality of life of 209 patients and their families who would have been left with next-to-no healthcare during the pandemic. We conclude that even in the context of much poverty, delivery of CBPC with the engagement of compassionate people in the community can successfully reduce SHS.
ABSTRACT
Purpose of Review: Breast cancer continues to be the most frequently diagnosed cancer in women and the leading cause of cancer death worldwide. By the suffering that it causes in various domains of life, breast cancer seriously impacts the quality of life of affected individuals and causes a major burden of suffering in the community. The objectives of the review were to understand the health-related suffering in patients with breast cancer and to identify the scope of palliative care in improving the quality of life of patients with breast cancer. Recent Findings: Breast cancer causes suffering in physical, psychological, social, financial, and spiritual domains of the lives of the patient and family. Management of breast cancer with surgery, chemotherapy, and radiation could have adverse effects, such as pain, nausea and vomiting, fatigue, shortness of breath, depression, and constipation. Both cancer and its treatment can impact the psychosocial and spiritual well-being of the patient and family members. Integrating palliative care into existing breast cancer treatment programs seems to be the best approach to diminish these sufferings. Summary: In addition to pain and other physical symptoms, breast cancer can cause major psychological, social, and spiritual suffering. In the context of developing countries, out-of-pocket expenditure can cause major financial destruction which can impact generations. Integration of palliative care to breast cancer treatment is essential.
ABSTRACT
BACKGROUND: Expanding access and improving quality of palliative care in low-middle income countries is a pressing priority. OBJECTIVE: The objective of the study was to describe structure and processes of care across government (GO) and non-GO (NGO) palliative care providers (PCPs) in Kerala, India. DESIGN: This was a cross-sectional telephone survey. SETTING/SUBJECTS: This study consisted of 200 randomly selected PCPs across Kerala. The survey explored organizational structure, patient assessment, opioid availability, and explored elements considered essential to palliative care delivery in the Indian context. RESULTS: One hundred GO and 100 NGO PCPs agreed to participate (100% response rate). The annual median number of new patients was 183 and 159 in GO and NGO PCPs, respectively. The median number of annual home visits in GO PCPs was 1398 and in NGO PCPs was 979. Median number of outpatient visits in GO PCPs was 600 and in NGO PCPs was 520. Only 24% (47/200) of the PCPs had full-time physicians with training in palliative care; 60% of GO PCPs had no full time physician with training in palliative care. Patient-reported pain was routinely documented by 21% (21/100) and 65% (65/100) of the GO and NGO sites, respectively (P < 0.001). None of the GO and only 36% (36/100) of NGO PCPs were able to prescribe oral morphine. Psychosocial and spiritual issues were documented routinely in only 4% (4/100) and 48% (47/99) of the GO and NGO PCPs, respectively (P < 0.001). CONCLUSIONS: Caution is needed against potential challenges to quality care in any new initiative. Kerala has achieved remarkable success in the coverage of palliative care through hundreds of locally active NGOs through GO machinery involving every primary health center. Yet, there are gaps such as absence of full-time physicians. This study highlights the need for periodic review to identify gaps in care.
