Dr. J.J. Beltman and drs. M. de Fouw (Leids Universitair Medisch Centrum, Leiden, The Netherlands)
In Sub-Saharan Africa where life expectancy is short, supportive and palliative care for severely ill patients are hardly available. Ethiopia is one of the countries where lack of access to pain relief and palliative care are apparent. In our study we assessed palliative care and support programs for women, mostly affected by cervical cancer and breast cancer. Breast and cervical cancer are the leading cancers among women in Ethiopia, with 15244 and 6294 new cases each year.
Most women identified with cervical and breast cancer present in advanced stage where curative treatment is no longer an option. Comprehensive palliative care services are needed but scarce, strong analgesics like morphine are hardly available and knowledge of palliative services in health facilities is limited.
We aimed to understand the current practices of palliative care, and the needs and preferences of both patients and their caregivers. We conducted in-depth interviews with terminally ill women (34) and their caregivers (27), and key informant interviews (16) with community leaders, religious leaders, health care professionals and policy makers.
All patients received support from the palliative care programs, but stated that it was insufficient to meet their needs. Most women (4 out of 5) suffered from moderate to severe pain, half of the women frequently experienced moderate to severe difficulties with sleeping or eating.
“She (the volunteer provider) has been caring. However, I am not happy and lose hope when my pain comes back. I then feel uncertain about my life. I feel like am dying. It is bad to live under uncertainty, losing my ability to make decisions about myself. The volunteer at times fails to help under such circumstances” (42 years old female patient)
Besides pain, and difficulties with sleeping or eating women suffered from other complaints like cough and vaginal bleeding, that strongly limited their daily activities.
“I bleed every time. It clots and clots and brought offensive smell since I do not have support to clean it and of course no one comes closer. I got weaker and weaker. Only recently volunteers came to help me – thank God.” (38 year old female patient)
Women felt very worried about their situation, and did not often talk about their worries and concerns with their caregivers. Religion did support women in feeling more hopeful about their situation.
Caregivers were often related to the patients, in half of the cases a daughter or son cared for their own mother. Neighbours and other community members supported less than 1 in 4 patients. Most caregivers experienced sad feelings while providing support to terminally ill women and experienced the work as consuming. At the same time, they felt confident about the care they were providing although they missed information on the diagnosis, signs and symptoms.
Health care professionals, community leaders, religious leaders and policy makers recognized the existing gap in palliative care provision and lack of knowledge on palliative care services. They pointed out the lack of organization of care, lack of skilled providers, lack of budget and low priority that is given to palliative care services.
During our study we found that only a selected group of women was included in the support programs, although the programs define palliative care in a broad definition including chronic illnesses like diabetes and hypertension. Considering the population size in the areas where the programs are active, many women with palliative care needs are not identified.
Our study demonstrates that there is an unmet need for palliative care services, that palliative care services should focus more on pain and symptom relief including training of related caregivers, and palliative care services should be integrated with existing community networks, religious structures and local and national health systems.