From Elective Reviews - Uganda - Hospice Africa, Kampala, 2005 - Helen Gregory, medical elective
This summer I spent time in Uganda doing my medical elective at Hospice Africa. Hospice is a Non Governmental Organisation, founded in 1993 by Dr Anne Merriman, for the care of terminally ill cancer and AIDS patients. It was developed as a model for the provision of palliative care, primarily pain and symptom relief, in Sub-Saharan Africa.
Due to the nature of AIDS associated cancer, these tumours often present advanced. Other factors contributing to the late presentation of tumours, include the very real stigma associated with HIV that I witnessed in Uganda, the poor primary healthcare system and low levels of education. Whilst we in the west want cures for our diseases and it is often viewed as a failure if this is not given, in Uganda some do not even contemplate the hope of cure, it is too distant. Unfortunately even when presentation is early, cure of cancer in Uganda is rare. Few patients can afford vital diagnostic tests and the cost of treatment chemotherapy, radiotherapy and surgery is too high. Only 5% have access to these forms of treatment. If you cannot pay for treatment then you are left to go home to die in pain.
However Hospice provides hope for these people, already denied what we, in the Western world, take for granted. Palliative care gives people a chance of a peaceful, pain free death. The hospice care provided is home-based care, meeting the cultural and practical needs of Ugandan people, who prefer to die in their own homes.
Currently, it is estimated that 25-50 percent of patients with full-blown AIDS suffer severe pain and require pain control medications. Over nine eight percent of people are suffering with pain when they first present to Hospice, providing overwhelming evidence for the value of this service. It is through Hospice and the tireless work of Dr Anne Merriman that Uganda has morphine. It is only the third African nation to have brought morphine into the country legally. Zimbabwe and Kenya are the other two.
During my elective at Hospice Africa myself and two other medical students from the UK, conducted an Audit to determine whether symptoms experienced by patients were correctly identified by the Hospice team. Due to the holistic nature of care given by the Hospice it was appropriate to sensitively ask the patient whether their terminal illness had affected their relationship with God, and if so how had it changed the relationship. If the patient was found to be struggling in their faith at this time, they could then be offered appropriate counselling and prayer support.
I was overwhelmed by the positive response we received.
34 patients were interviewed and no one said that their relationship with God had become damaged or more distant throughout their illness and in the end stages of their disease. 47% said their relationship had become closer and 53% said that they had a relationship with God, and this had not changed.
Nobody said they were atheist or did not believe, perhaps a stark contrast to an answer we would have heard if we had conducted the same audit in the Western world. The strong impression I was given by these people was that they stood firm in their faith even in the time of dying. They did not feel abandoned by God, nor angry towards him. They did not blame God for their circumstances and were full of praise for the Lord and his goodness to them.
Many patients explained that they had seen relatives suffer in pain as they died and they had also feared a painful death. However through Hospice and the provision of morphine they no longer feared for this. Now their main worry was for the dependents they were leaving behind. It was such a privilege to talk to these patients about their love for the Lord.
One particular patient left a lasting impression on me. A young lady we visited was lying on a mattress on the floor of her humble home. She could hardly move or speak and the distress for her family is still unbearably vivid to me. She had a massive fungating tumour of the left side of her body, and I could not fail to notice the flies and smell of her tumour as I entered. Yet beneath this I saw such a beautiful young lady. As we entered, her eyes lit up and she held out her emaciated hand to greet us. She spoke in the local language and when I asked for a translation they told me she was hoping the 'mzungu' (white person) would be able to take her home with them and help her. I felt so helpless and embarrassed. Yet hanging on the bear unpainted stone walls of her one room unfurnished house, I noticed a simple wooden cross and the word 'Jesus' embroidered on a tapestry. Although I was saddened so much by seeing her situation, my feeling of helplessness was lifted as I focussed on that fact that she knew the Lord and had faith that he would ultimately heal her. Jesus will ultimately provide his people with new life and a new body.
Many people might have thought that there was nothing more we could do for this lady but in fact there was so much. It was important to continue to provide her with morphine for pain control, to allow her to spend her last hours of this life in peace. She told us how the morphine was a gift from God and had brought her great relief, allowing her to get some sleep. We also offered to pray with her and she accepted. After we prayed together she told us she was at peace with God.As we said goodbye, the inequalities of this world were very painfully clear. She had been denied treatment someone in the Western world would have automatically have received and the hope of cure. She had been denied clean water, food and basic amenities and nearly everyday of her life had been a struggle for survival. Yet she was so thankful to God for his provision in her life and knew she was richly blessed. She had true life through Jesus Christ that many people in the world will never experience. It was such a privilege and humbling experience to pray alongside this lady. However difficult it is to understand the unfair distribution of wealth in this world, it is so comforting to remember that God shows compassion in a needy world and what he has in store for his people in heaven is so wonderful.
I reflected on the fact that helping the poor to live and die well was practised by Jesus himself and it is our duty to look after the sick, where ever they maybe. Hospice provides an excellent example of Christ's love for his people. Hospice does not just treat Christians, but attempts to provide palliative care for all those in need, and happily offers prayer to those who want it.
Another patient who I will never forget was a 22 year old male patient, suffering with cancer of the penis. Through speaking to him, I discovered the devastating harm traditional medicine can do in the sub-saharan setting and the enormous relief morphine can bring. Having consulted and trusted witch doctors, this man had taken herbal remedies for over a year in an attempt to cure his symptoms. Trusting the witch doctor he had delayed seeking medical help until his tumour was so advanced it had fungated and spread to the inguinal lymph nodes forming a massive wound, measuring 10cm by 8cm with a depth of 5cm. Unfortunately, due to lack of education, his family had been cleaning it daily by pouring bleach into the wound. He was in such physical and mental distress as he told us his story of how he had naively thought he had been doing the right thing. He did not blame anyone, for the African culture has not heard of the concept of suing. He was just so grateful Hospice had come to him. As he lay on his mattress he told us that his wife had just given birth to their first son and he was desperate to get well to go and earn money for their food. We gave him morphine and sterile saline to wash the wound. We prayed with him for relief of his pain and for his new family. When the Hospice team returned the next week he was feeling a little better and was so thankful that his pain was under control. He told us that as a Christian he had nothing to fear in death. This was so wonderful to hear and I praise God for this man's spiritual strength in a time of such physical weakness.
My time at Hospice was amazing. It allowed me to grow in my spiritual faith and to gain a deeper understanding of the importance of palliative care and pain relief from both a Christian and medical perspective. The presence of sickness and death all around was a constant reminder of the certainty of heaven. Believers in Christ will be richly blessed. It is so reassuring to know that these bodies and minds, weak and wasted, that have worked so hard everyday of their life merely to survive, will be perfect in heaven. Perhaps an important lesson for the Western world in our obsession of survival and health. The work of Hospice will not halt the HIV/AIDS epidemic, but the act of bringing God's love through peace and pain relief to the dying patient gives dignity and hope. Dignity that these people, precious to God, deserve. Hospice is a blessing to Uganda and it was a pleasure to spend time in such a beautiful country amongst such wonderful people.
For further information about Hospice Africa please go to website - www.hospiceafrica.org.ug