Breast cancer is one of the most common cancers diagnosed (88% in females) at the Dharmais Hospital National Cancer Centre (NCC), West Jakarta, and out of 6155 in-patient breast cancer cases registered between 2011-2015, 18% were diagnosed as metastatic breast cancer (MBC) and of these individuals only around 12.5% received palliative care. The current barriers among MBC patients in West Jakarta are not yet fully understood due to a lack of data and information, and even though patients’ families often admit MBC patients into hospital, they do not take advantage of the palliative care services. The development of a better palliative care model would improve the quality of life of MBC patients.
The development of palliative care in Indonesia is still in its early stages as the estimated coverage is less than 1% and there is no national palliative care policy. Dharmais Hospital NCC is a government-designated national cancer centre, and as part of its services it measures and provides information regarding the current cancer burden in Indonesia through its cancer registry. It also has a strong focus on health promotion and breast cancer screening programmes and has a palliative care department with an outpatient clinic and home care. The hospital’s existing network with local health authorities, especially community health centres in West Jakarta is a good opportunity to begin to establish and expand palliative care services in the communities of West Jakarta.
This project aims to empower patients with MBC and their families to acquire knowledge about her/his diagnosis, treatment plan, prognosis, and needs (including financial, social, emotional, functional and spiritual). These conversations will also help the hospital health care team understand a patient’s discomfort, pain and other side effects. When patients are empowered, they are more likely to be more open to tell doctors about their symptoms, and in turn this will support doctors to find the best options for managing their symptoms, including the Dharmais Hospital NCC palliative care service that is currently underutilised. Indeed, palliative care works best when a patient, their family, and the hospital health care team all work together.
"This SPARC grant is very important for our organisation as a National Cancer Centre to improve the quality of metastatic breast cancer care, as one of our purposes is to give a continuous and comprehensive cancer care in Indonesia."
A survey will be performed to identify MBC patients’ needs and the kind of barriers they face in accessing palliative care in Indonesia. In addition, training for health care providers and data collectors will be provided on how to communicate a patient's condition and how to empower patients.
This assessment of palliative care needs will provide insights concerning the patients and their families’ perspectives about palliative care and barriers to access. This valuable opportunity will also allow health providers to inform MBC patients about the benefits of palliative care.
Through this grant, an appropriate palliative care programme for MBC patients in West Jakarta will be established, with the development of a palliative care unit in each hospital and primary health care centres in West Jakarta, alongside the implementation of national standards or guidelines in educating MBC patients and a referral system for palliative care.
(Information from the project description and context is compiled from the grant application)