“The Spirit of Palliative Care” – First inpatient center for end of life care in Rwanda

Rwanda has made significant strides in the development of palliative care, and was the first country in Africa to develop a stand-alone national palliative care policy. It was launched in April 2011 together with a national palliative care strategic plan and standards. This ground breaking policy commits the country to providing all Rwandans living with life threatening and limiting illnesses, with high-quality affordable palliative care services to meet their physical, psychological, social, and spiritual needs by 2020.

All hospitals from district to provincial are directed to ensure they have palliative care fully integrated. Central to palliative care is pain control and the relief of troubling symptoms.  The terrible truth however, is that many people across Africa have to endure agonizing pain during their illness and as death approaches their families are forced helplessly to watch their loved ones’ in distress.

I heard a story which broke my heart. The story was of a man who died in a horrible way that led a catholic congregation of sisters to build the first inpatient center for end of life care. The Congregation called the “Sisters of Angels” arrived in Africa in 1984; it is a catholic charity from Poland aiming to help the health sector by building health centers and hospitals. Currently they are working in three countries: Rwanda, Congo and Cameroon. Through various apostolic activities, they seek to meet the spiritual and social needs of the population, especially in the health and educational fields. Their activities include medical care, build health centers, dental care, sewing and embroidery, catechesis, animation youth and children, orphans frames (800 children) to whom they provide medical assistance, payment of school fees etc…

Sister Barbara, head of Hospice St John Paul II said, “In 2008 we faced a story that shocked our lives. Our guard, who was a 43 years old man was tested and was found to have HIV/AIDS advanced disease. His family was not able to treat him and the social situation was horrible: 4 children, woman also with HIV/AIDS and a small poor house. In the absence of an alternative, we welcomed him into our home and took care of him for a few weeks. Immediately he started ART treatment and few days later, the general condition improved and he returned at home. A Few weeks later probably due to a poor diet, he had a relapse. Due to a lack of funds he was transferred to the hospital but it was too late. Meningitis was diagnosed, and despite of our efforts, he died a few weeks later with severe pain. We transferred the body to the house, about 45 miles from Kabuga health center because the family could not afford the cost of transport. I felt shocked and I cried for 2 days. I realized that not only the old but also young people get very sick and need a place where they could be consider as human being, a place where we will improve their quality of life, a place where patients and families will get hope, a place where they could die with dignity”.

The Centre for Palliative Care St. John Paul II is a brand new building with red bricks, ceramic sheets and a big garden. It’s about 20 min driving from Kigali town with a catchment area of 20% of Gasabo district. The admission program will start next month from the beginning of September. The structure has 22 beds for patients, kitchen, refectory, chapel, recreation room, nursing room and consultation room.

“I still have the image of our guard who died without any appropriate support; we would like to give hope for our future patients that there is care behind cure. I remember when I talked to him, slept in our room surrounded by his family; his eyes expressed a feeling of helplessness, loss of self-esteem and sense of life. I would like to not only accompany the dying but also restore harmonious relationship between their families, communities and God. By creating this inpatient center we would like to respond to the call of former Pope John Paul II who stated on several occasions that the patient of AIDS and other incurable disease should be the subject of any assistance and all possible respect. We must give them any kind of physical, moral and spiritual relief and more, they must be treated as Christ himself” said Sister Barbara.

I would like to quote St Francis who expressed his heart about living in the community: “Where there is discord, may we bring harmony. Where there is error, may we bring truth. Where there is doubt, may we bring faith. And where there is despair, may we bring hope.”

A few days later, I was reading my Bible and one of the verse kept my attention and remind me the story of the guard; John 12:24 said: “I tell you the truth, unless a kernel of wheat falls to the ground and dies, it remains only a single seed. But if it dies, it produces many seeds.” He was the good seed which died but not for nothing, through his death something happened, compassion driven, tears talked, feelings explained, emotions expressed and actions realized.

This is what I called” the Spirit of Palliative Care”