Dr Peace Bagasha is the first renal physician and palliative care physician in Uganda. Peace writes below about a story of how she was able to bring hope to a young man with kidney disease in Uganda. 

I stood by his bedside in Kiruddu Refferal Hospital watching him struggle to breathe in and breathe out. I had seen him multiple times on many hospital admissions over the past 12months. He was barely 35, almost the same age as me, but this time was different. We would not be having the same conversation about life and options as we had had before. We would not even be having a verbal discussion this time round. I had said “hello” earlier and the most he could manage was a smile when he turned and recognized my face. He had no energy to reply beyond the smile, he was saving every breath to just breathe in and breathe out. 

In a way John was the exceptional one out of many of my end stage kidney disease patients. Fully aware of his personal financial situation, and having experienced the struggles of his older brother who was on dialysis, he had adamantly chosen not to even think about hemodialysis as an option. He chose from the very beginning maximum conservative management adamantly stating that “I cannot afford dialysis”.  

His family was seated around him fully aware that he had not many days or even hours left. He was not in pain. He was comfortable thanks to the care and support provided by the palliative care team.  

With no national health insurance coverage supporting renal care, in Uganda patients have to pay out of pocket for renal replacement treatment including hemodialysis and kidney transplant. Costs range from 500,000Ugshs per week for dialysis to 100millionUgshs for a kidney transplant abroad. This makes hemodialysis inaccessible for majority of Ugandans. Some try to sell property and assets but funds soon run out and poverty levels worsen. Conservative care is the forced option for most. 

With access to palliative care services provided by the palliative care team in Kiruddu, John and his family had the rare opportunity in Uganda to experience dignity and get holistic support at the end of life. Without financial support from people like you, many other Johns will not have an opportunity as special as this. 

#BringingHope. Donate here. 

The end-of-life can be a scary and difficult time for patients, their loved ones and health care professionals. Although it is an inevitable event, we can be overwhelmed by fear of the unknown and problematic symptoms. 

Being a newly qualified healthcare professional, I found end-of-life care very difficult to manage and had limited specialist experience in that field. As medical professionals we are taught how to 'fix' people, and so facing mortality of our patients can be distressing or feel like we have failed them. However having worked alongside the experienced team at PcERC, I have learnt that it is in fact possible to bring hope and comfort to patients and their families at this difficult time.

A story which sits at the forefront of my mind is that of LM, a patient with Cholangio carcinoma. PcERC supported her for several weeks during her inpatient stay whilst she was receiving chemotherapy. Initially the team were asked to consult to help manage her distressing symptoms, particularly pain.

After discussing her concerns, we were able to understand that her pain was poorly controlled in part because she was concerned about the effects of medication and so had not been using them correctly. After fully exploring her concerns we were able to arrange a pain control regime that suited her and managed her symptoms. Consequently she was brighter, able to and able to enjoy time with her loved ones rather than suffering in pain.

However what LM and her carer reported they appreciated the most from our team was our time. They expressed that our input meant they felt listened to, had better understanding of her condition and felt more confident in caring for LM. I realised that hope can come in many forms, although her outcome and prognosis were not changed, we were able to improve her quality of life with symptom control and knowledge.

It has been a real privilege to work with PcERC and see the fantastic work they do to help make death as dignified and peaceful process as possible.

#BringingHope. Donate here.

Toko Friday Santiago, a volunteer for PcERC in Uganda shares a story of how he brought hope to a refugee with terminal cancer...

Rita (not her real name) was a 49 year old refugee from Congo who was diagnosed with breast cancer which had spread to her lungs. She was married with two children, 24 and 15 years old. Rita's husband was her main caretaker. After spending several weeks on the surgical ward in Mulago hospital she was referred to the palliative care team by the surgical doctors for pain and symptom control. Being a member of the multidisciplinary team (MDT) as volunteers, we visited her and her husband. Though we had challenges with communicating with them because of a language barrier, we managed to establish a good rapport with both the patient and caregiver through an interpreter. We became very good friends and she was able to open up and share a lot of information regarding her fears and concerns about her illness. She was concerned whether she would be able to get treatment and a cure for the disease and feared she may end up dying and never to see her children again. 'I don’t have money, I can’t even afford investigations', she lamented.

“I want a cure; I want to go back to Congo and see my house and children”

Her main distress was overwhelming pain, an inability to walk and difficulty with breathing. She was bed bound and could not even turn in bed. The team prescribed her oral morphine, which the volunteers helped to get from the pharmacy and also educated her husband on how to give morphine, explaining that this will reduce her pain and improve her breathlessness. She was also encouraged to adapt to a sitting up position and other breathing techniques which would make her as comfortable as possible. Practically the volunteers were able to pick her drugs from the pharmacy and also help translating English language to the patient and family since they could only communicate in French and Swahili. We were able to liaise with Inter Aid, an organization that supports Refugees, who helped with providing food and upkeep to enable her to stay on the ward. After a few weeks her symptoms were managed, a biopsy was done and referred to the cancer institute. Unfortunately, she was asked to do more investigations – pre-cancer treatment – but she was unable to do this due the financial constraints. As volunteers we continued visiting her on the ward, spending time with her and at times praying with them. They were very grateful to us and the palliative care team saying… 'you are angels from God... We are refugees but God has sent you to visit us and comfort us please come always!'. We continued to liaise with the social work team but it became difficult to raise funds for her investigations. This was quite distressing for the patient, caregiver and us as volunteers. She was then discharged back to the Refugee camp and as she was leaving she said she was very grateful to us for the love, care and support given to them as strangers and wished God’s blessings. 'At least let me go and see my children before I die!' Said Rita as she left the ward. Inter aid organized her transport back to the refugee camp. Her husband called to inform us of her death 2 weeks later. May her soul rest in peace.