Nairobi — 'We put life into your days, not days into your life.'
Millions of people die needlessly in pain in the Global South each year due to a lack of palliative care and opioid access - interventions that can ease a patient's suffering over the course of a life-limiting illness.
Africa is the worst-affected continent. Only 11 of Africa's 54 countries have basic palliative care plans or policies aimed at managing unnecessary pain and providing support to patients and their families. Fewer still have integrated that care into the curricula of their medical schools.
Pain relief medication availability is also highly skewed. Just six high-income countries consume 79% of all global morphine production. The negligible use in Africa is both a consequence of cost - opioids are expensive - but also of strict controls, driven in part by fear of opioid abuse.
Typically, only doctors are able to prescribe and, in a continent with an extremely low doctor-patient ratio, that means huge gaps in access. In many African countries, morphine is not available at all through the public health system.
The need for analgesics is only growing. In 2020, there were more than a million new cases of cancer - a toll that's predicted to increase by 70% over the next few years. Although many cancers are increasingly treatable in many places around the world, there is less success in Africa, where screening is poor, patients seek medical attention late, and where there's far less availability of the more effective newer therapies.
In Kenya, cancer is already the second leading cause of death from non-communicable disease.
Joshua Ouma, 51, was diagnosed with rectal cancer three years ago. When he first fell sick, with vomiting and diarrhoea, he thought it was just malaria. It took repeated visits to clinics and lots of tests before the problem was identified. Despite undergoing chemotherapy, the spreading cancer destroyed his rectum.
A water seller, hawking 20-litre plastic jerry cans from a cart, Ouma had become too sick to work, and relied on his community to help him with his medical bills. He now has to permanently wear a colostomy bag.
"I had never seen anyone using one. It costs 600 shillings [$6] per bag and that is money I didn't have," he told The New Humanitarian. "The community that was helping me was also getting tired of helping. I had been told that the bag is reusable, but I didn't understand how to reuse it."
Ouma joined a support group at Nairobi Hospice - one of more than 30 hospices in Kenya - and drops in twice a week. "I found other patients with cancer. Some said they have had cancer for four years, and that was encouraging," he said. "Before, I had thought death would come at any moment."
The hospice, a charity organisation, provides free colostomy bags, morning tea, and lunch. It has a keep-fit class, and sometimes distributes groceries. "When we are here, speaking with one another, it helps us overcome the stress," said Ouma. "Then, when I go home, I can sleep."
Africa's palliative care league table
Although palliative care is a relatively new medical field - the first hospice in the UK was only established in 1967 - a handful of countries in Africa are recognised to have made strides. Among them are Kenya, Malawi, Rwanda, Uganda, and South Africa, scaling up from what typically began as missionary-run hospices to integrated nationwide public services.
Malawi, in particular, is regarded as a model. It has made progress on all four "pillars" of a public health strategy recommended by the World Health Organization, which includes policymaking, medicine availability, education, and implementation - which covers a range of options that includes home-based, outpatient, and inpatient care.
Kenya isn't too far behind, according to Asaph Kinyanjui, a palliative care practitioner, and board member of the Kenya Hospice and Palliative Care Association (KHPCA).
"We have worked with the Ministry of Health to make palliative care a recognised need," he told The New Humanitarian. "The focus has historically been on treatable communicable diseases, but the growing burden of non-communicable diseases has helped shift that focus."
Kenya has a national policy, nearly all public hospitals have palliative care units, and the government's National Health Insurance Fund covers hospital-based treatment - and that could soon be extended to home-based care, picking up some of the associated costs, like gloves and syringes.
Opioids are also available, provided by the Kenya Medical Supplies Agency, a government body.
"Morphine is now considered an essential medicine and is distributed for free in public hospitals, hospices, and faith-based facilities," said Kinyanjui. "The old practice, where it was locked away in a cupboard and only the matron had the key, is changing: Nurses can also prescribe."
Not enough advocates
But plenty of challenges remain. Coverage is patchy, with the rural areas especially short of skilled care providers. The palliative care sessions taught in medical schools are relatively short, and there is no specialised degree option in Kenya, which may weigh against it as a desirable career path.
"The other gap is leadership, over who can help drive development," said Esther Muinga, coordinator for pain relief and palliative care at the KHPCA. "There's a paucity of specialists in positions of authority in the Ministry of Health that can advance palliative care, and the few that are there are too busy to take on an advocacy role."
There is also a gigantic cultural hurdle to overcome. There is hesitancy over talking about death, to accept that an illness is untreatable, and that patients and their families need to prepare for the end of life. That means people tend to arrive at palliative care units and hospices sick and broke - after trying everything to try and fend off the inevitable.
"Some oncologists and doctors don't want to let go of fee-paying patients, even when they know there's nothing more they can do for them," said Winnie Mwangi, fund development officer at Nairobi Hospice. "Sometimes, doctors don't feel comfortable discussing death, or the end of the curative process."
The hospice is a two-storey building tucked away in a medical district, next to the sprawling Kenyatta National Hospital, the largest in East Africa.
Its community-based, providing services virtually for free, and alongside its outpatient care, runs outreach programmes into deprived neighbourhoods, as well as the homes of bed-ridden patients. Its sponsors include philanthropists, corporations, and the odd golf tournament, and the hospice has raised enough money to soon open a small inpatient ward.
The hospice has a slightly clunky vision statement, in large-type on the reception wall. It calls for: "A society in which patients with life-limiting diseases and their families lead comfortable lives". Mwangi has a practised, pithier line: "We put life into your days, not days into your life."
But because the hospice marks the end of curative treatment and the beginning of a new journey, its caseload is typically the frailest of patients: people with acute diarrhoea, or who have difficulty eating, are unable to care for themselves, or are mentally confused.
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"They come when they are dilapidated health-wise, and are also exhausted financially," said Mwangi. "Many are poor and disenfranchised. Some were breadwinners before, and their illness has affected the entire family."
Cancer is the most common cause of ill-health, followed by HIV. And it's more women than men seeking care. Last year, the Nairobi Hospice helped 2,500 patients.
Hamida Saidi, 60, was diagnosed with breast cancer more than a decade ago. She struggled to finally raise the money for a mastectomy, but then was only able to complete three of her six scheduled chemotherapy sessions.
"With cancer, you can sell all your property and still fail to find enough money," she explained. "It is much better nowadays, as people have medical insurance, even though it doesn't cover everything. But back then, it was more difficult."
She has also joined a support group at Nairobi Hospice. "The only medicine I get from here is painkillers," she told The New Humanitarian. "They would love to give chemo, but they don't have the funding."
For Mwangi, the work of the hospice "is all about improving the quality of life. We don't talk about death."
But it takes a toll on staff.
"We had a programme where we would debrief, say prayers, find out how we were all doing, see if there were any challenges," she noted. "We need to pick it up again. Who cares for the carers is an issue - we are sometimes too busy to take care of ourselves."
Edited by Andrew Gully.
Obi Anyadike, Senior editor, Africa
Anthony Langat, Freelance journalist based in Nairobi covering humanitarian issues, development, the environment, climate change, security, and human rights.
