As part of my investigation for the NGO Committee on Ageing in Geneva into the situation of older refugees, a neglected population in global health, I visited Mr Emmanuel C., a 75 year old refugee from the DRC. Mr C. is living in Kampala with his wife and eleven children, and was recently diagnosed with cancer of the liver.
I was accompanied by Sylvia Dive, a French speaking Congolese nurse from International Programs, Hospice Africa Uganda. Sylvia translated our conversation from French, as Mr C. graciously allowed us to interview him about his situation as an older refugee, and to take photos.
“We will all die if we stay here”
He said: “I left my country three years ago because of fear of death. There is no peace: the soldiers burned one of my houses and looted the house where I lived with my family.
“Although I resisted leaving because I am old, my children told me we will all die if we stay here. We left under cover of darkness with only the clothes on our back. If you carry even a backpack the security forces will know you are leaving the country and will kill you, chop you up with machetes.
“If you have a small property or small amount of money, your life is in danger. You don’t know who is going to kill you. There is no security or rule of law.”
As a successful businessman over 70, who owned a house and property in his home town, he was traumatised by having to leave everything he had worked for over a lifetime in one night, and by the violence he had witnessed. He said: “I had everything, now I have nothing. I am nothing. If I didn’t have any (adult) children to work for our rent and food, I would be a beggar today.”
In an abrupt reversal of roles, Mr C. is utterly dependent now on his children for support and, until recently, for accurate information about his health condition.
No one would give him a straight answer
Although Mr C. presented with advanced cancer of the liver, the hospital doctor didn’t tell him his diagnosis, following the wishes of his family, who “wanted to keep him safe.”
Since few Ugandans speak French, the hospital staff did not have the usual palliative care discussion with him about diagnosis and goals of care.
Mr C.’s children, who range from teenagers to adults, had learned some English in the past three years, but he had not – a significant, yet extremely common barrier for older refugees, as the literature reveals, particularly when it comes to accessing appropriate healthcare.
Mr C. knew he was unwell: he was weak and his belly was swelling. He was angry because no one would give him a straight answer.
The turning point
The turning point came after the hospital referred him to Hospice Africa Uganda, a Kampala based charity that treats patients for free.
But there were no French speakers on the hospice team that first came to visit him at the house, so no one could tell him what was wrong, or properly explain why they were there.
Fortunately, Hospice has Sylvia Dive, a French speaking Congolese nurse, on staff, so she accompanied the team on the next home visit. Sylvia gently broke the bad news to him, taking at least two hours for the conversation.
It goes against hospice ethics to keep patients in the dark about their condition, to deny them “insight,” to use the local expression, so she had to over-ride the family’s wish to “keep him safe.”
Like most patients who hear they have a terminal condition, Mr C. was shocked and angry at first, but relieved that he finally knew what was going on.
I asked him how hospice had helped him. He said: “hospice has become like my parent. They come once or twice a week and I feel more peaceful.
“I feel comfortable that there is a team following up on me. After they leave I am back in my corner of sadness but happy to know they are following me and that they know my condition. I feel that I am part of their life, and have a friend in the world.”
Like many older persons who have been violently displaced from their homes, and find themselves living as “urban refugees” rather than in organised settlements with their fellow countrymen, Mr C. was unable to learn the language of the host country, and was isolated in the neighbourhood and confined to the house.
His solace is his church, Jehovah’s Witnesses who visit twice a week to pray with him and read the bible in Swahili.
Without hospice, his end in Kampala would be bleak indeed. He would die in a government hospital, probably with little or no pain relief, and no staff to speak his language.
A need for hospice interpreters
Clearly there is a need for trained interpreters on hospice teams in this globalised age where so many vulnerable people are on the move, and when the grace of carefully chosen words, as well as compassionate presence, can ease the double trauma of exile and terminal cancer.
This recent article on a California program, highlights the added value of training interpreters and the development of a palliative care curriculum for interpreters.
Hospice Africa and the Palliative Care Association of Uganda, whose nurses in the north see the Sudanese refugees, could use these sort of interpretation services to support their teams.
We bid Mr.C. and his oldest daughter, Miriam, farewell, having shared a very intimate conversation, sometimes peppered with jokes, about the anguish of exile, loss, and bereavement.
I was reassured that Sylvia and the team would be checking up on him next week, and will send me a bulletin, although I will be half a world away in Geneva, sharing his story at an event on the plight of older refugees, at the Human Rights Council.
A few days after seeing Mr C., I had a meeting with two older refugees from the DRC and Burundi at the Refugee Law Project in Kampala.
They have a support group that is looking for elderly countrymen and women to join their community in exile.
I have put Hospice in touch with the Refugee Law Project, so they can to send Mr C.’s details and follow up with social and cultural support for him in this last period of his life.
Recognising the holistic needs that accompany emergency situations such as those of Mr C. and millions of other refugees, including children, IAHPC is sponsoring a new network – Palliative care in Complex Humanitarian Emergencies (PALCHE) – to scope out existing services and gaps in the provision of palliative care to people facing these emergency situations.
You can read more about PALCHE on ehospice.
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