As clinical head of Hospice Ethiopia, I have worked in palliative care for six years. During this time, I have cared for many patients – in our out patient clinics, at the hospice and in their homes. However, as I provide the care, I also am aware of the cost of caring.
One person who taught me the cost of caring is Aregash*, a 56 year old lady who had been coming to the hospice day care programme for four years. Aregash was HIV positive, widowed and living in very poor conditions in a single room.
For her, coming to the day care programme was the social highlight of her week. She met up with other patients and got to know us as staff really well.
For those four years, taking anti-retrovirals, her disease was under control.
However, this all changed within a matter of days. Aregash came to the hospice clinic complaining of diarrhoea and vomiting. She was so ill that she was admitted straightaway.
As clinical head, I gave her IV fluids and started IV antibiotics to try and help deal with this opportunistic infection.
Unfortunately, by the time Aregash had come to the clinic, the infection had taken hold of her compromised immune system. We were unable to reverse the situation and Aregash died four days later.
Aregash’s death had a severe effect on me and on all of the hospice staff, we felt that we had failed her, as we were unable to treat the infection.
I felt that it had been left too late and I was unable to save her. When her family came to collect the body, I sat in my office and wept.
Aregash was not just a patient, but had become a member of the hospice family. I had always looked forward to seeing her every week. As a staff, we sat together and discussed the care that we had given her and felt that if she had come to us sooner, maybe the situation would have been different.
This experience made me aware of the cost of caring. Although I can speak to my colleagues, and we try and support each other, there is a real need for supporting the carer.
Working in palliative care, patients become friends. Due to the fact that there are limited health resources for our patients, approximately 30% of our patients die every year. There is a high cost for caring in Ethiopia.
*Name has been changed
Ephrem Abathun is head of the clinical department at Hospice Ethiopia, the first hospice in Ethiopia. Find out more about Hospice Ethiopia online.