I have been working in the Belarusian Children's Hospice since February 2013 and I am mostly involved in Home Care for children who live outside Minsk, the capital of Belarus. This means that a nurse or a doctor together with our hospice driver can travel up to 250km to more remote areas of the country to provide palliative care at home. This is my favourite BCH programme, probably because I understand that children who live far away from Minsk are in greater need than those children who live in the city.
In many cases, families living in rural areas feel isolated. In Minsk, there are many more opportunities for getting professional help and raising money. The reality is that after a child who is suffering from cancer is discharged from hospital and returns to their home in a small town or village the family faces a difficult situation because there are no palliative care professionals in local hospitals or out-patient clinics who can provide real help. Quite often, these children have rare conditions and local doctors have no knowledge of the usual course of the disease or what can be done to control the pain and to provide a decent quality of life. The aim of our programme is to help families like this by providing them with the best support and professional care.
During the short period I have been working in this programme it has, at times, been rather difficult and intense for me. I have nursed more than a few children with incurable cancers who have died and this is very upsetting even when you feel prepared. I must say that, at the beginning, I found it very difficult to cope with the death of a child. My colleagues and our psychologist were a great help to me. They showed me how important it is for the nurse to understand the situation properly in order to be strong enough to help both the family and the child in their struggles with pain and sorrow. A nurse who comes to a family should be both medical professional and psychologist at the same time and, thanks to my training at BCH, I have been able to combine those two roles very effectively.
Another significant aspect of this programme is that I can only visit children with chronic conditions such as cerebral palsy, infantile paralysis, multiple sclerosis and epilepsy once every 4 or 6 weeks. You can imagine how anxiously the mother and child wait for me when I visit the family so infrequently! Sometimes I spend 2-3 hours talking to a mother who wants to share her news and her concerns.
As it happens, the majority of children I have visited during the last six months are suffering from cancer. I would like to share the story of one child, Arisha, and her mother Tatsiana. The family live in Baranovichy, a town 200km from Minsk. Tatsiana's life has been very sad, she is divorced and was bringing up her sick child alone. What was even more distressing is that she had a poor relationship with her own mother, Arisha's grandmother. Both Tatsiana and her mother had married alcoholics and were divorced soon after giving birth to their child. Arisha, developed acute leukaemia when she was just 5 years old. At first the doctors were optimistic about her prognosis but after the first block of chemotherapy the leukaemia was complicated by necrosis of the pancreas, bowel and brain. As a result, the second block of chemotherapy was cancelled and Arisha suffered a relapse. The child herself was lovely and very bright. Another complication with Arisha was that we could only relieve her pain for 24 hours at a time. We would, together with our doctor, decide on one method of pain control but by the next morning this scheme was no longer effective and we needed to search for alternatives. This lasted for a month and was very difficult both for us as professionals and for the family. Due to the complexity of the situation, a doctor and I visited Arisha 2 - 3 times a week. Unfortunately, neither the doctors from the local outpatient clinics nor the doctors from the local hospitals could help because they know relatively little about palliative care. Thanks to the Belarusian Children’s Hospice, the family was not left alone.
Another difficult issue is that a child often understands a great deal and asks really pertinent and direct questions. You cannot lie or be evasive and have to find the right words to explain how their illness will progress and how you will be there to help and comfort them and their family. The month which I spent with this family was very important to me. Arisha became very attached to me and concerned as to how I would get to her when it was snowing or raining; even when she was almost unconscious she would open her eyes when I came into the room. We did our best, as professionals, to ease Arisha's pain and to make her as comfortable as possible. My role during that time was also to help Tatsiana to improve her relationship with her mother. She had been aggressive towards her mother at the beginning but after Arisha died they were reconciled and that made me very happy.
I think the Home Care outside Minsk programme is very important and I hope that, after building a new children's palliative care centre, BCH will be able to help more children in distant areas of Belarus by training doctors and nurses throughout the whole country.