Abstract
INTRODUCTION
Palliative care improves the quality of life of patients, and their families, facing problems associated with life-threatening illness, through the prevention and relief of suffering. Most children needing palliative care at the end of life are neonates residing in low- and middle-income countries; around 68% have perinatal conditions, and nearly 10% have congenital anomalies. MSF operates maternity services within Dasht-e-Barchi hospital, Kabul, Afghanistan, where over one thousand deliveries take place each month. The intermediate-level neonatal unit receives babies with extremely low birth weight, extreme prematurity, congenital anomalies and other conditions such as severe birth asphyxia. For many of these babies, intensive curative therapy is deemed not in the baby's best interests and providing appropriate comfort care is required. We describe our efforts to implement palliative care in this setting.
METHODS
Steps taken towards implementation of palliative care within the neonatal unit initially involved discussions with key stakeholders, including the project clinical staff, the Ministry of Health and community leaders, to identify needs and local barriers. Following this, sensitization and training of staff was carried out to improve understanding of palliative care. Finally, we developed a palliative care framework, involving tools for clinical management, as well as guidance for decision-making and communication, and the implementation of a palliative care committee.
ETHICS
This innovation project did not involve human participants or their data; the MSF Ethics Framework for Innovation was used to help identify and mitigate potential harms.
RESULTS
Discussions with key stakeholders, including individuals based within the Ministry of Health, community leaders, and clinical staff, helped identify contextual barriers to implementing palliative care, including religious beliefs and the lack of an existing medical and legal framework. Some staff initially described resistance, partly due to their lack of experience or training in palliative care, and the absence of formal policies around palliative care in Afghanistan. We carried out training for nursing and medical staff, focusing on core concepts and technical skills. We developed a communication framework, to help deliver clear and consistent information to caregivers, addressing the need for understanding improvements in quantity and quality of the baby’s life. To further enhance communication and collaboration, a palliative care committee was established, including nursing, medical and managerial staff. This committee meets regularly to discuss palliative care issues, as well as also holding ad-hoc meetings to support clinical decision-making and caregiver counselling.
CONCLUSIONS
The implementation of neonatal palliative care requires involvement of key stakeholders to overcome potential barriers and to develop a clear framework. The palliative care committee we developed provides a support system to help facilitate consistent decision-making, and a collaborative multi-disciplinary approach for clinical care. While there are ongoing challenges in such a context, our experience shows that it is possible to implement context-specific and family-centered palliative care.
CONFLICTS OF INTEREST
None declared.
