The Tiyanjane Clinic provides inpatient care; outpatient care and community care for patients and families faced with life threatening illness. Improving their quality of life involves helping with pain relief, nutrition, HIV counselling and sometimes help with transport home. Tiyanjane also provide a service for people with Kaposi's sarcoma. This is Malawi's commonest cancer and is related to HIV. The service includes holistic assessment, counselling, guardian support and education, pain relief and vincristine chemotherapy. Many patients discharged from hospital require ongoing care at home and two Tiyanjane nurses support community care and are based at Ndirande health centre.
Palliative care nursing is quite new in Malawi - can you tell me what it's about?
Palliative care is the care we give to the chronically and terminally ill and those with incurable diseases like HIV/AIDS and cancer. When we give that care we try to address all the areas of a person's life including spiritual, social and psychological; that is holistic care. Mainly we try to control pain and other symptoms so that patients can have a good quality of life.
How did you come to be working as a palliative care nurse in Tiyanjane? Have you worked in other areas of nursing before?
EM - I trained at Trinity hospital in Nsanje and then moved to Sister Marinas Hospital to work as a general nurse. I then worked in a private surgery clinic in Blantyre for 1 year and in Mlambe Hospital for 3 years before moving to the medical wards at QECH. It was while I was there that I was asked to start working in palliative care. I had 2 weeks palliative care training at the College of Medicine. The wards were too busy because people did not understand their diagnosis and kept coming back to the ward asking for further treatment and to be cured. They didn't understand their disease and that it was incurable. Palliative care was started to help control the number of patients coming to the wards and give them disease counselling
HB - I trained at Holy Family Hospital in Phalombe and then worked as a general nurse at Tsangano Health Centre in Ntcheu. I then worked as a general nurse in different health centres in Nsanje for 12 years; did community training in Lilongwe for 1 year and then worked as an enrolled community health nurse for 8 years. Following retirement I saw an advert for a palliative care nurse in the paper and applied. I then completed 2 weeks palliative care training at Cure Beit Hospital.
How long have you been working in palliative care and has it changed in Malawi in that time?
EM - For 5 years. There has been improved patient care, symptom control and psychological care due to training and therefore we take more time to understand the problems of the patient and what we can do to help. Patients can now understand their disease. At first, results of HIV testing took a long time to come but now they are straight away; just there.
HB - For 3 years. I have learnt that palliative care can help people with life threatening conditions live longer, after they have received treatment and that they can stay comfortable. Also since palliative care has extended to the community there are good links from the hospital to the community, patients can be followed up and if they have problems they can be assessed and then managed properly in the community.
How would you like to see palliative care develop in Malawi?
We have seen how palliative care can work in other countries e.g. South Africa, Uganda. We would like very much a hospice where patients can be cared for properly when they are dying. People in Malawi like to die in hospital rather than at home. Guardians are afraid of death and will bring the patient to hospital to die. Also we would like to visit the patients at home more. There are patients that fail to come to hospital due to transport or pain and we need to scale up our community service (just provided in Ndirande at present). In South Africa some nurses just provide community palliative care. There are others in Malawi that need our help. But we need transport to do this and more nurses.
Do you have opportunities to develop your skills via training and courses?
Yes we do. We have had training in Home Based Care and also Palliative care. Also in HIV issues and orientation in ART. We have also had ‘memory book training’.
Isn't it depressing to look after people with incurable diseases?
Yes if the patients are suffering too much but if you give them good care then it is interesting. People need to die with dignity and to be prepared for it.
What are the most challenging aspects of your work?
Sometimes for the patient to understand their problem. Also breaking bad news. Telling someone who is dying; when they are receiving good symptom control and therefore feel they are getting better. Dying is a big separation.
What are the most rewarding aspects?
When those that I saw in severe pain; vomiting; not able to eat due to abdominal distension; or being carried in - when they say they are better or they walk in by themselves to clinic. When a patient dies peacefully. Our aim is to make them die peacefully. When they die without pain, that is what we are expecting.
Elizabeth Magombo
Harriet Basikolo