INTRODUCTION
Since November 2019, Medecins Sans Frontieres (MSF) and the Malawian Ministry of Health have provided a comprehensive range of cervical cancer care services. Initially, all consultations, pathological diagnoses, chemotherapy, surgery, and patient support activities were centralized at the tertiary hospital. To address the overwhelming surge in demand for these services, an innovative decentralisation approach was introduced to alleviate the workload and enhance patient care quality.
METHODS
The decentralization strategy involves triaging patients at the district level and categorizing them by type of lesion (Fig 1). Patients with early or locally advanced cancer, as well as those in need of palliative chemotherapy, are referred to the tertiary hospital for further evaluation and treatment. Those with premalignant lesions or advanced cancer are treated at the district level by trained surgical and palliative care teams. Quality is ensured through provision of medications, equipment and allowances, as well as monthly mentoring sessions for about 120 providers.
RESULTS
During the first months of comprehensive care provision, the number of palliative consultations at the tertiary hospital increased way above the threshold of 150 manageable consultations. Using the new decentralized system from August 2021, 818 palliative patients were referred to 45 palliative sites at district level, leading to a reduction in monthly consultations at central level from a high of 226 (2021) to a high of only 134 (2023) (Fig 2). Among the new patients presenting at the tertiary hospital, an average of 45% presented with benign or pre-malignant lesions. Therefore, from July 2023, 561 women started to be biopsied and managed at their district hospitals instead of the tertiary level.
CONCLUSIONS
It is feasible to provide a comprehensive package of cervical cancer care in low resource settings without overburdening services when a decentralization strategy is used to ensure manageable workload and high quality of care.
Early integration of pediatric palliative care (PPC) for children with cancer is critical to improving the quality of life of both the patient and family. Understanding physician perceptions of palliative care and perceived barriers to early integration is necessary to develop PPC in Brazil.
METHODS
The Assessing Doctors' Attitudes on Palliative Treatment survey was modified for use in Brazil. The survey was open from January 2022 to June 2022 and distributed to physicians of all specialties from participating institutions who treat children with cancer. Statistical analysis was complemented by qualitative analysis of open-ended responses.
RESULTS
A total of 272 respondents participated. Most respondents reported access to PPC experts for consultation (77.2%) and 34.5% indicated previous palliative care training. Physician knowledge of PPC was generally aligned with WHO guidance (median alignment, 93.0%; range, 80.5%-98.2%). However, about half (53.3%) felt comfortable addressing physical needs of patients receiving PPC, 35.3% addressing emotional needs, 25.8% addressing spiritual needs, and 33.5% addressing grief and bereavement needs. Most respondents (65.4%) felt palliative care should be involved from diagnosis, but only 10.3% stated that this occurred in their setting. The most important barriers identified were physician discomfort (89.0%), limited physician knowledge (88.6%), and lack of home-based services (83.8%).
CONCLUSION
Despite a strong understanding of the role of palliative care, physicians in Brazil reported low confidence delivering PPC to children with cancer. Additionally, physicians generally believed that PPC should be integrated earlier in the disease trajectory of children with cancer. This work will direct educational and capacity building initiatives to ensure greater access to high-quality PPC for children with cancer in Brazil to address patient and family suffering.
The Médecins Sans Frontières (MSF) Goyalmara Hospital in Cox’s Bazar, Bangladesh is a referral centre offering the highest level of care available in the Rohingya camps for pediatrics and neonatology. Efforts are underway to integrate pediatric palliative care due to high mortality and medical complexity of patients, yet little is known about the experiences of staff delivering palliative and end-of-life care. The purpose of this study was to understand the moral experiences of MSF staff to inform program planning and implementation.
METHODS
This focused ethnography was conducted between March-August 2021 at Goyalmara Hospital. Data collection involved participant-observation, individual interviews (22), focus group discussions (5), and analysis of documents including MSF clinical guidelines, admission and referral criteria, reports, and training materials. Data analysis followed a modified version of the Qualitative Analysis Guide of Leuven and data were coded using NVivo software.
RESULTS
The prevailing understanding of pediatric palliative care among national and international staff was care that prioritized comfort for infants and children who were not expected to survive. Staff’s views were informed by their sense of obligation to do no harm, to do their best on behalf of their patients, and religious beliefs about God’s role in determining the child’s outcome. The authority of doctors, international staff, as well as protocols and guidelines shaped palliative care decision-making. Staff saw clinical guidelines as valuable resources that supported a consistent approach to care over time, while others were concerned that palliative care guidelines were rigidly applied.
CONCLUSION
When integrating palliative care into humanitarian programs, it is important to emphasize the active role of palliative care in reducing suffering. Advocacy for access to the highest level of care possible should continue alongside palliative care integration. While palliative care guidelines are valuable, it is essential to encourage open discussion of staff concerns and adapt care plans based on the family’s needs and preferences.
919,000 Rohingya refugees live in overcrowded camps in Cox’s Bazar, Bangladesh after fleeing violence in Myanmar. The Médecins Sans Frontières (MSF) Goyalmara Hospital offers the highest level of pediatric and neonatal care serving the Rohingya refugees and palliative care is gradually being integrated due to high mortality and medical complexity of patients. The purpose of this study was to understand the moral experiences of staff involved in providing palliative care to inform program implementation at Goyalmara Hospital and in other humanitarian contexts.
METHOD
This focused ethnography was conducted between March-August 2021 at Goyalmara Hospital. Data collection involved participant-observation, individual interviews (22), focus group discussions (5), and analysis of protocols and other documents. Interviews and focus groups were audio-recorded, translated, and transcribed. A coding scheme was developed, and data coded using NVivo 11.
RESULTS
A key finding of this study was the important yet contested role of clinical guidelines and policies in palliative care related decision-making which was shaped by the authority and impermanent presence of international staff in the project. Staff saw clinical guidelines as a valuable resource that supported a consistent approach to care over time, and some locally hired staff used clinical guidelines as a tool to support their point of view during care planning discussions with international staff. Others felt that palliative care guidelines and other policies were inappropriately or rigidly applied, particularly surrounding decisions to refer (or not refer) patients to a higher level of care, or to discontinue certain medical treatments at end of life.
CONCLUSION
MSF staff experienced tension between the need for clarity and consistency, and the need to tailor guidelines to the context, patient, and family. Open discussion of staff concerns may alleviate moral distress and alert teams to areas where advocacy, staff psycho-social support, training, or clinical mentoring are needed.
