In 2014 the Medical Service of the Diocese of Aru was delighted to receive funding from The True Colours Trust (TCT) through the African Palliative Care Association (APCA) to support their work in palliative care in Aru, a small city in northern DRC. This funding has allowed us to consolidate and increase our work, which was much appreciated by the local community and local government authorities.
Prior to the beginning of our work in 2010, palliative care was not known in this region of the DRC, either by medical staff or the local community having a limited understanding of this specialty. We started with the coordination of two seminars on palliative care: one for medical personnel and the other for interested religious leaders; these included pastors and mothers from the local Mothers’ Union.
The work was further developed by creating a small multi-disciplinary team that visits patients with palliative care needs at home, as well as inpatient and outpatient services in our hospital. Our team had the opportunity to visit Hospice Africa Uganda (HAU) for a one-week training for Francophone countries, with the participation of two of our nurses, alongside the Aru Medical Director at the Aru General Hospital.
The goal of this initiative was to develop our current capacity to deliver palliative care services, with more integration in health services existing in the region. We also had the expectation of receiving an increase number of patients with palliative care needs as our community becomes increasingly informed and engaged.
The project had three specific objectives:
- To train/educate regional medical staff and students, church leaders, local government and the community in palliative care, so that a) the principles of palliative care becomes integrated into their daily medical practice; and b) the community becomes aware of the existence of these services and their potential;
- To provide holistic palliative care to patients who have incurable diseases, either at home or in hospital, including proper control and management of symptoms as well as spiritual support, psychological and social support;
- To develop strong collaboration between our palliative care team and other hospitals and health centres in the region, so that patients who need palliative care can be supported in the most easiest way, and palliative care will become rooted in the medical work in this region.
The project was completed in early 2015 and it is relevant to assess and consider how the project evolved during the year:
Training and education in palliative care.
Through seminars and workshops, we educated local health science students, nurses, doctors and religious leaders, and it was encouraging to see how this work is now beginning to bear fruit in our hospitals and local churches. Some churches are now engaged to support members of their communities who are approaching the end of their lives. Community education was conducted mainly from weekly radio broadcasts. The feedback from the local community, which used our telephone hotline to call in with questions, has highlighted the need for education on palliative care and cancer.
Since the beginning of this initiative, the number of patients who come in for consultations has increased; patients who would previously stay home until death, patients who sought an elusive cure; or in some cases, patients who were given a diagnosis of cancer that was completely wrong. Our role has been to plan for what can be done to help patients in the terminal stage of a disease, scale up on treatments are useful and scale back on treatments that are not useful, and work towards doing better at finding a true diagnosis, as well as planning for disease prevention initiatives.
Providing holistic care
Our second objective was to provide holistic palliative care for patients during the terminal phase of a disease, both at home and in the hospital. During the year, it was encouraging to see a significant increase in the number of patients and families that we had the opportunity to help. The majority of patients in Aru most often avoid seeking medical consultation until the disease reaches an advanced stage; and even if they arrive early, it’s rare that they have the opportunity or financial capability to go to Kampala, to the nearest center with cancer treatments. Most patients have used all their money they have, looking for an elusive cure, and just stay at home, very often, with painful symptoms. Many patients have been abandoned by their families, they often have only a caregiver who is a child, struggling to provide all the care that the patient needs, often exhausted and discouraged. We are certain that it is clearly essential to increase and expand home based care services.
Our third objective was the development of a collaborative networks between our palliative care team and other community health institutions. We were very pleased with the interest and support of our local health government authorities in our hospice work. Increased collaboration continues to be developed between the three main hospitals in Aru, and it is very encouraging to see that the recognition of the need for palliative care services and a desire to help such patients who come in need for such care.
We were encouraged to see how our work has developed over the past year, it’s definitely a work in progress; there is much work to be done in the coming years and many challenges ahead, but solid foundation and roots were already established. We would like to take advantage of this opportunity to thank The True Colours Trust and African Palliative Care Association for their assistance in strengthening our work and the local community.