The 10 days that I (Teresa) spend in Uganda were awesome! I attended a training at Mildmay Centre just outside of Kampala. This centre is an HIV program for both adults and children. They have outpatient clinics for both adults and children and an inpatient ward for children. It is an amazing place. The care given to patients is comprehensive and caring. The training that I attended was Pediatric Palliative Care training. The instructors were doctors, nurses, health care workers, and pastors from the Centre. They were all extremely knowledgeable in this area and all seemed to have a lot of compassion for their patients.
The training covered the principles of pediatric palliative care and how pediatric palliative care is different from adult palliative care. The training was holistic, covering physical, spiritual, psychological, and social issues that patients receiving palliative care may be dealing with. I learned how to control pain with proper dosing of oral morphine, along with other tactics, like distraction. I learned how to break bad news to a patient or family. This is something that none of us like to do, but sometimes has to be done. I also learned that it takes a multidisciplinary team to help these patients. It can’t be done by one person, doctor or nurse. Counselors, social workers, dieticians, play therapist, pastors are all a part of this team, along with doctors and nurses.
On the second to last day of the training, we were separated into groups and given a patient to assess and discuss the problem list for the patient broken into physical, spiritual, psychological, and social issues. A management plan was then made utilizing all of the knowledge that we learned in the training. This was a very good experience, as I was in a group that had a 17 year old boy diagnosed with HIV/AIDS and disseminated Kaposi Sarcoma, which he had been treated for at least twice with chemotherapy, and he was also on ARV’s for his HIV. He was admitted to the inpatient clinic since January because the treatment is no longer working and he is no longer able to walk. The lesions are covering his legs and they are swollen at least twice the normal size, as well as his feet. The lesions look like blisters and are draining. He has to stay in bed and he has a cradle to keep the sheets and blankets from sticking to the lesions. He doesn’t want to go out of his room and visit with the other patients or staff, but still seems to be in good spirits! His uncle is staying there with him to help with his care. He carries him if he needs to get out of bed. His mother and father have both died of HIV/AIDS. He lives with his grandmother and has an aunt and cousins that help with him at home. He talked about school and his friends and said that they don’t treat him any differently because of his diagnosis. I am sure that was when he could still go to school and walk. He said that he sometimes hears from his friends from school through an sms. It is too far for them to come and visit him.
When we had our visit with this young man, he gave us the impression that he was receiving his first chemotherapy treatment and that he would walk again and go back to school. What we found out from the doctor in charge of his care, afterwards, is that this is his third chemotherapy treatment and that it is palliative and only to de-bulk the tumor burden; Which means that it not meant to cure the disease or make it go away, only to reduce the size and amount of lesions which will make him more comfortable. He will probably never walk or go to school again. He has been told this, but then he got very depressed and stopped eating. They have given him counseling and a pastor comes and visits and prays with him often and he has started eating again. He is also getting nutritional milk in between his meals to build him up. He says that he knows Jesus and talks to Him regularly on his own. He seems to be coping, but we thought he was in denial, which he may be, but the doctor says that they have decided not to discuss his prognosis with him in detail anymore so that he can hold on to some hope. Sometimes that is the best decision for the patient, and has to be discussed with the family or care-giver who knows the patient much better than we do as health care professionals. So I was very impressed with the care they are giving this young man and the way they are handling his case, with his best interest in mind. To me, this is what palliative care is all about, holistic patient centered care, with family involvement.
This is the kind of care that we want to do here in Swaziland for children that are battling a life threatening disease. We want to see them be cared for holistically and with respect. If there is no cure, or medical help, we want to see them die with dignity, comfort, and lack of pain, having all of their needs met, as well as the family. This is why we need a pediatric palliative care clinic here in Swaziland, so that children don’t have to die alone and in pain. I believe this is something that the Lord wants to see done here, because He loves these precious ones so much! Please pray for us as we attempt to be obedient and add this project to what we are already doing here in Swaziland. If this Hospice for children works, then we can use it as a model for others in the country. One day we would like to have one in Maphiveni along with an HIV clinic. That is in God’s hands and His timing!