“It was a bad accident,” they said: “Two motorcycles.The driver was drunk, he smelled of alcohol.”
The woman was unconscious. Her face was bloodied and her lips and eyes swollen. There was blood in her mouth, throat and lungs. She was nearly dead. We did what we could for her. But we knew she was going to die soon.
Here at the clinic we could not intubate her or provide intensive care for her. All we could do was ‘make her comfortable’.
But the family had other ideas. A brother came from Freetown. He had some money. They said they were taking her to a bigger hospital, three hours away. There they thought she would get the care she needed. They took her in a taxi and she died on the way. She probably died in pain.
This account comes from my work in Sierra Leone. My work comes with many challenges.
According to UN statistics, Sierra Leone ranks in the bottom 5% in terms of poverty worldwide. Here more than 50% people do not make US$1.25 a day. And nearly one in five children do not reach the age of five. It is a country that was ravaged by the civil war that ended just eleven years ago. And it is a place where death is all around.
Myself and four other volunteers from the UK are here to work in a government hospital (three doctors, a nurse and myself, a nurse-midwife). We support the local staff clinically and provide teaching. There have been moments of incredible joy, but we have also come across many challenges. A big challenge has been the high mortality rate, which we encounter and fight against daily. Our biggest challenge of all is the sheer lack of palliative care as we would understand it in the UK.
My first encounter with death in Sierra Leone was a young woman who had delivered a dead baby in her village and was brought into the hospital after three days of feeling unwell. She presented far too late. She was septic and unconscious on arrival. We did everything we could for her, given the resources that we have, but she was so sick that she didn’t have a chance. Everybody knew that she was going to die, but nobody talked about it. We discussed the importance of keeping her comfortable and pain-free, but the nurses were reluctant to give her tramadol injection (an opioid, and the only strong pain relief available here). They said it would make her more unconscious. They meant it would hasten her death– and they were probably right– but our argument was that it was better for her to die without pain, than to prolong her life, in pain. She died that night. She had only one dose of tramadol.
So, what is palliative care and why is it important? According to the World Health Organisation: “Palliative care improves the quality of life for patients and families who face life-threatening illness, by providing pain and symptom relief, spiritual and psychological support from diagnosis to the end of treatment and bereavement” (WHO, 2002).
In healthcare, we strive to cure people of their illnesses. But, when treatment is no longer effective, we look to palliative care to help us to care for people at the end of their life.
I would argue that the most important aspect of palliative care is taking away the pain. It is our duty in healthcare to relieve pain. It is a human right to be pain-free. So why do people still die in pain?
There are many reasons. For example, often there is more than one cause of pain. In AIDS pain may be caused by the virus, a cancer, an opportunistic infection, the treatment or a concurrent problem. Another reason why people die in pain is sometimes there is a belief that pain in death is inevitable. This belief may stem from cultural and religious beliefs.
In Sierra Leone, cultural and religious beliefs play an enormous role in daily life. The main religions are Christianity and Islam, and if a person dies, it is said to be God’s will. However, people also believe in witches, demons and devils. It is a local belief, for example, that every year, the devil takes two children in the river. Many diseases here are blamed on curses and witchcraft. Traditional medicine and herbalists are frequently used by local people.
Since being in Sierra Leone, we have found that sometimes, death is blamed on witches’ curses and demons. When a young woman died this week from a rare and very severe clotting disorder, the healthcare workers believed that this was because she had two devils. In the same way, healthcare workers are afraid of being blamed for a death. They are afraid that death will occur on their watch. Sometimes this leads to inappropriate transfer to an alternative hospital even though it is futile.
Often traditional medicine is used first and when this does not work, people come to the hospital. There is a lack of trust in hospitals and western doctors. The problem is that, because people see the traditional herbalist first, they present far too late at the hospital and often we cannot cure them. This compounds their belief that hospitals are dangerous and that western medicine does not work.
Death is surrounded by cultural and religious beliefs. And in the same way, so is the care of the dying. We have been advised that it is not culturally appropriate to discuss death with somebody that is dying in Sierra Leonean culture. We should be seen to try everything that we can. Even at great cost to the family.
This is something that I have found very challenging. I would say that we often make the mistake of trying to keep a dying person alive as long as possible, and sometimes this adds to the suffering for the patient and family.
Last month, we had a very tragic case. It was another young mother who presented very late and was unconscious on arrival. She had cerebral malaria. This woman had three young children in her village, and a newborn that she delivered in the village the day before. The woman was accompanied by her sister who was breastfeeding an older boy. I knew from her tears that the sister understood that she was dying. I didn’t need to say anything to her. I gave the newborn baby girl to the sister and asked her to breastfeed her. We named the baby after her mother.
That night they took her away in a car, back to her village. The family said, if we could do nothing in the hospital, they would go to the local herbalist. The nurses said, it’s very expensive to transport a dead body. She probably died on the way.
We are a long way from establishing an effective palliative care system in Sierra Leone. We are a long way from talking to people about what their ideal death would be. We are a very long way from ensuring that people have dignity and comfort in their last hours. The expression in Sierra Leone is ‘slow slow’. Changes like these, take time. And the first step in making small changes is to learn and to understand.
Sometimes we cannot go forward without first looking back. A Sierra Leonean nurse once told me: “You know, we’ve seen death before. We’ve lived through a civil war. During that time we saw dead bodies stacked high by the roadside.”
In Sierra Leone, death is all around us. Death is very much part of life. And one day, in Sierra Leone, death will not have to be painful any more.
An organization working toward this vision of a pain-free death for people in Sierra Leone is The Shepherd’s Hospice, based in Freetown. This service is the only authorised stockist and prescriber of oral morphine, a key drug in the management of pain. A palliative care team conduct home visits to people living with HIV, cancer and other life-limiting illnesses. These patients are either self- referred or referred by hospitals in the community, such as the Connaught Hospital, 34 military hospitals, Princess Christian Maternity Hospital Emergency Hospital in Goderich village or Rokupa Community Hospital.
Efforts to expand the palliative care services are taking place. The Shepherd’s Hospice leads projects to train healthcare workers and volunteers in basic palliative care skills, and works with communities to advocate for health rights, including the right to a life free from pain. They use the palliative care toolkit to cascade healthcare worker training in palliative care to reach more beneficiaries in rural communities where palliative care is unknown.
For example, a five year project funded by the UK’s Department for International Development through Help the Hospices, had just come to an end. The project focused on improving health systems across eight districts in Sierra Leone, training volunteers and health staff and increasing confidence in healthcare workers in breaking bad news and providing treatment, care and support of families facing loss. The project improved access to HIV and TB care in Sierra Leone, resulting in over 10 000 TB patients tested for HIV (a five-fold increase from baseline), an increase in new patients enrolled in care, and an increase in the number of patients adhering to HIV and TB medication. It will be a long time before full palliative care services, with appropriate pain relieving medications, are available across the country, but small steps are being made.
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