A Door-to-Door Effort to Find Out Who Died Helps Low-Income Countries Aid the Living

Many developing countries don’t keep official death records. A novel effort uses “electronic autopsies” to count deaths, and record their cause.FUNKOYA, Sierra Leone — Augustine Alpha begins gently. “Who lives in this home?” he asks the young man, who has come in from the fields to answer his questions.Your name? Age? Religion? Marital status? In what grade did you leave school? Do you own a bicycle? Mr. Alpha taps the young man’s answers into the laptop perched on his thin knees.Then comes the key question: “Did anyone die in your home in the last two years?”“Yes,” the young man says, “my mother.”Mr. Alpha expresses his sympathy, asks him her name — it was Mabinti Kamara — then plunges in: Was she sick? How long? Fever? Rising and falling, or steady? Vomiting? Diarrhea? Tremors? Did she see a doctor? Get medication? Have pain? Where was the pain, and how long did it last?Ms. Kamara’s son is reticent at first but is soon caught up recounting the story of those last few weeks of his mother’s life, describing the fruitless trips to the local clinic. Mr. Alpha taps away until every detail has been entered in the software of a public health survey called the Countrywide Mortality Surveillance for Action, or COMSA. Then he snaps his laptop closed, applies a sticker to the wooden shutter of the front window marking the Kamara house as surveyed, reiterates his condolences and moves on to the next home.In this way, Mr. Alpha and three colleagues will, over a few days, gather the details of every death that took place in the village of Funkoya since 2020, using a process called an electronic verbal autopsy. The data they collect goes to the project’s head office at Njala University, in the town of Bo, a few hundred kilometers to the east. There, a physician reviews the symptoms and description and classifies each death according to its cause.Augustine Alpha, a surveyor, spoke with residents of the village of Funkoya about a recent death in the family.It is an extraordinarily labor-intensive way of establishing who has died, and how, but it’s necessary here because only a quarter of deaths in Sierra Leone are reported to a national vital statistics registry system, and none of the deaths have a cause assigned. Life expectancy here is just 54 years, and the vast majority of people die from preventable or treatable causes. But because there is no data about the deaths of its citizens, the Sierra Leonean government plans its programs and health care budget based on models and projections that are, ultimately, only best guesses.There are a variety of reasons families do not report the deaths of people like Ms. Kamara to a national registry, none of them complex. The registry office may be far away, and they can’t afford the transportation costs, or find the time to go there, or pay the nominal fee for the death certificate. It may be that they’ve never even heard of the practice; the state has very little presence in their lives. The dead are buried behind their homes or in small village plots, as Ms. Kamara was; the local chief might then make a note in a ledger, the contents of which never travel out of the village. Sierra Leonean hospitals don’t automatically share their death records either.Sierra Leone is not an anomaly. Vital statistics collection across the developing world is weak. While progress has been made in recent years in terms of birth registration (which is increasingly tied to access to education and social benefits), nearly half of the people who die around the world each year do not have their deaths recorded.“There is no incentive in death registration,” said Prabhat Jha, who heads the Center for Global Health Research in Toronto. He pioneered these kinds of efforts to count the dead two decades ago in India; doing it now in Sierra Leone, one of the world’s poorest countries, has shown that the model will work anywhere, and has helped bolster a government eager to root its policies in evidence and hard facts.The topic of vital statics registration is not glamorous, but it is critically important for understanding public health and socio-economic inequality. Covid-19 has brought new attention to the topic. Debate over how many people have died from the coronavirus, and who they were, has become political, and in countries such as India lower death counts have served the agenda of national governments hoping to downplay the role of failed pandemic policies.A grave was dug for Francis Kailie, who died suddenly after having abdominal pain, behind his family home in the city of Bo in southern Sierra Leone.It matters that we know not only how many people died, but who they were, and when they died, said Stephen MacFeely, director of data and analytics for the World Health Organization. “As we come out of the eye of the storm, this is when you talk about learning lessons.”There is, for example, fierce debate among epidemiologists about whether Africans are dying of Covid-19 at the same rate as people elsewhere in the world, and, if they are not, about what might be protecting them.When countries don’t know who has died or how, it complicates efforts to reduce preventable deaths. The government of Sierra Leone allocates its budget, as many developing countries do, based in part on models provided by UNICEF, the W.H.O., the World Bank and other multilateral agencies that project the number of people who will be killed there each year by malaria, typhoid, car accidents, cancer, AIDS and childbirth. These models are built on global estimates, and draw on dozens of studies and individual research projects, which can do a reasonably good job of estimating the larger picture but are sometimes far less accurate at the national level. As Dr. Jha explains it, malaria data that came from Tanzania or Malawi isn’t necessarily going to be accurate for Sierra Leone, even though all three countries are in Africa.“You want countries to make decisions based on their own data, not relying on a university in North America or even the Geneva office of the W.H.O.,” he said.The information collected through this painstaking door-to-door work has shown that the models can be drastically wrong. “When you count the dead, you just get information that you didn’t expect,” Dr. Jha said.The first COMSA study looked at the households of 343,000 people in 2018 and 2019, of whom 8,374 died. The verbal autopsies produced discoveries so surprising that Dr. Rashid Ansumana, a co-principal investigator for the project, refused to believe them for months, until the revelations had been checked and rechecked a number of different ways.Kadijatu Jiallo, left, interviewed Alpha Mohammed Kamara, who gestured toward the spot where he had buried his wife recently, in Mabin village.“I got convinced with facts and evidence,” said Dr. Ansumana, the dean of the college of community health at Njala University. “And now I can convince anyone: The data is awesome.”The first big surprise involved malaria. The research showed it to be the biggest killer of adults in Sierra Leone. Dr. Ansumana said that in medical school he was taught that malaria killed children under 5, but people who survived childhood had an immunity that kept repeated malaria infections from taking their lives.Pretty much everyone working in health care in Sierra Leone believed it, he said. In fact, the plotted data showed that malaria deaths formed a U-shaped curve, with very high numbers among young children and lower ones for young adults; the numbers then rose again in people over age 45.The second shock was regarding maternal mortality. The study found that 510 of every 100,000 women die in childbirth — a staggeringly high rate, but still only half of what the United Nations bodies reported for Sierra Leone. The finding was a relief for the government, Dr. Ansumana said, because it showed that resources being poured into making childbirth safer for women and babies was paying off.Now a second round of the national survey is underway, seeking to illuminate, among other things, the health impact of Covid-19.To secure this kind of data without having to go from door to door, Sierra Leone is working on reforms to its civic registration, and is one of many countries trying to figure out how to make certain that more deaths are counted.Many of these fixes are straightforward and don’t cost much, said Jennifer Ellis, who leads a program called Data for Health, run by Bloomberg Philanthropies, that aims to boost health data collection in low and middle-income countries.It starts with overhauling an extant death certificate to collect usable information on who died and why, and training doctors to be aware of why a specific cause of death is important (that is, for instance, why it matters whether a death is logged as “pancreatic cancer” as opposed to “abdominal pain”).Bearing the coffin of Mr. Kailie to his burial in Bo.“You need to change how the data flows,” she said, because it may be collected by a national interior ministry and not shared with a health ministry. Data should be digitized, so it doesn’t just sit moldering in ledgers. It should be easy for people to go somewhere to register a death, and free.Another step is routine collection of verbal autopsies for all who die outside a health system. This involves identifying and training people at the community level, such as midwives or community health workers and others who might do basic primary care in low-income countries, to try to collect information on every death.Digitization is expensive, Ms. Ellis said, but the other steps cost very little. Fewer than 5 percent of deaths in Zambia included a recorded cause when Data for Health joined up with the government there in 2015; by 2020 that figure had risen to 34 percent. Peru introduced a digitized cause-of-death reporting system that now makes death information available in real time; because it had solid and swiftly accessible data, it reported some of the highest Covid death rates in Latin America.Information captured by new death registration systems has quickly been translated into health policies. When improved cause-of-death collection revealed that road accidents were among the top causes of death in Colombia, its government moved quickly to introduce safety protections in the worst-affected areas. In India, the recorded number of people dying of snakebite exceeded the W.H.O.’s estimate for the entire world; antivenom was made available at more primary care centers in heavily affected areas.But while many countries are eager to transform what they learn from death statistics into policy, others are hesitant. “I’m not sure all governments really understand the power of data — and let’s be frank, a lot of governments probably don’t want to measure it, either,” Mr. MacFeely of the W.H.O. said. Some view higher Covid death counts as an indictment of their pandemic responses, he said.Still, he said, the W.H.O. is encouraging countries to treat vital statistics data as they do other forms of infrastructure, such as gas systems or electrical grids.“This is part of managing a modern country,” he said. After concluding her interview, Ms. Kaitongi put a marker on the home she visited.

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This Psychiatric Hospital Used to Chain Patients. Now It Treats Them.

Sierra Leone, one of the world’s poorest countries, is working to build a modern mental health system from scratch.FREETOWN, Sierra Leone — For centuries, they called the foreboding building on a hill above this capital city the Kissy Lunatic Asylum. It was built in the early 1800s by the British colonial administration, and behind the high walls, patients were kept in chains. People here say the stench seeped from the brick walls, and the screams of patients, whose psychosis and trauma were untreated by medication or therapy, echoed out the narrow, barred windows.Today a small wooden sign hangs over the front desk in the outpatient department: “Sierra Leone Psychiatric Teaching Hospital: Chain-free since 2018.” The sunny corridors of the newly renovated facility flash with the fuchsia uniforms of psychiatric nursing students. The shelves of the pharmacy are lined with the latest antipsychotics and antidepressants. Children bounce on a trampoline at a cheerful clinic just for them. And six residents are on their way to being the first psychiatrists ever trained in this country.The transformation at Kissy is part of an extraordinary effort to build a mental health care system from scratch in one of the poorest countries in the world. The residents work the wards and see patients in the packed outpatient clinic, under the supervision of three consulting psychiatrists. They are the only three in the country’s entire health system — a staggering ratio, but a threefold increase from decades when there was just one, who paid the patients at Kissy a weekly visit.Around the globe, the Covid-19 pandemic has brought a surge in mental health problems — and has drawn attention to the severe limits on resources to help. There are often long waiting lists for appointments with therapists in high-income countries, but the shortage in the developing world is something else all together.“You could have situations with one psychiatrist per million people, and no psychiatric nurses whatsoever,” Mark van Ommeren, who heads the World Health Organization’s mental health unit, said in an interview from Geneva. The front desk of the Sierra Leone Psychiatric Hospital. A sign above the desk reads “Chain-free since 2018.”Psychiatric nursing students attended a lecture in a new teaching complex at Kissy.The absence of personnel to study and diagnose mental illness makes the actual scope of the burden of disease in developing countries something of a mystery. Dr. George Eze, the head of the new teaching program, surveyed the noisy line that spilled from the clinic into the courtyard on a recent steamy morning and declared it both a tragedy and a wonderful thing. Sierra Leone is a vivid example of human resilience — anyone over the age of 30 today has lived through a civil war and displacement, an Ebola epidemic, devastating mudslides and now the lockdowns and disruptions of Covid. Most people, he said, have absorbed the traumas and carried on. But not everyone.“There is PTSD, depression, all the psychopathology that goes with disaster,” Dr. Eze said. “We see 100 outpatients per day. The wards are full. Now I extrapolate to the entire population. If you pass through any market, you’ll pass many people with depression, phobic states, personality disorders. This is just the tip of the iceberg.”Families once dreaded handing over their loved ones at the Kissy gates, Dr. Eze said; they brought them only when they felt they could not care for them at home, when paranoia or psychosis made their behavior violent or strange. “People used to bring their family here with their hands tied and say, ‘Take this man’ — a last resort,” he said.These days, when he arrives at work, he notices that patients and caregivers park motorbikes or cars out front, unashamed to be seen. “Now they come for help,” he said.Sierra Leone lacks more than just psychiatrists; there are only three physicians for every 100,000 people, the W.H.O. says (compared to 278 per 100,000 in the United States). But efforts to build the health system in the country are focused on physical health and primary care, as they are in many countries in the global south. Mental health care is often seen as an impossible luxury.The curriculum in medical schools and nursing colleges in developing countries rarely includes even a passing mention of mental health, Mr. van Ommeren said. Graduates primed on infectious disease and obstetrics are never taught to diagnose or treat postpartum depression, schizophrenia or post-traumatic stress.Sierra Leone has been pouring money, including funds from the World Bank and international donors, into rebuilding its health system since the end of a brutal civil war in 2001. The country is making gains against chronic problems such as malaria and maternal mortality.But it took serendipity, and some significant outside help, to take Kissy, named for the neighborhood where it is located, from asylum to teaching hospital.In 2014, the Boston-based humanitarian medical organization Partners in Health teamed up with the Sierra Leone health ministry to rehabilitate the hospital. The walls were lowered, the bars removed. Workers installed plumbing and electrical wiring, and a giant suite of generators, to make up for the failings of the rickety municipal power service. Patients were given bedsteads and fresh bedding, in lieu of torn and filthy mats on the floor.Dr. George Eze, head of psychiatry at the University of Sierra Leone Teaching Hospitals Complex.Morning at the fish market at Man of War Bay in Freetown. Sierra Leoneans over age 30 have lived through a civil war, an Ebola pandemic and other traumas, Dr. Eze said, but almost none have had access to mental health support.“And on the 18th of August, 2018, we unchained the patients,” said Anneiruh Braimah, the head of nursing. “It was epic.”Mr. Braimah, a wiry man who is known at Kissy as the Matron, has worked at the hospital since 1998. Drawn for reasons he can’t explain to psychiatric nursing, he studied in Nigeria and then turned down a job offer there to come home and offer his services at the health ministry, which dispatched him to “the asylum.”At Kissy for decades, he was both nurse and doctor, he said, sometimes prescribing medications, when he could get them, and supervising a shifting roster of people who came briefly to work there. The standard of care involved physically restraining patients — with the chains — and injecting them with heavy sedatives, when they could be obtained.It was hard to feel good about the work they were doing, Mr. Braimah said, but they didn’t have options. “We just weathered the storm,” he said. “Even basic care, you couldn’t do it.”With the Partners in Health investment, two things changed: The unchained patients no longer raged and hurled the contents of their chamber pots, and students — just one or two at first — expressed interest in doing proper training rounds at Kissy.Regina Conteh, a nursing student, said her parents had barraged her with warnings before her first day at Kissy. But on her first day in the women’s ward, she found that patients were not threatening her with violence. In fact, some sought out her care.On a recent day, a young patient named Aminatta brandished a bottle of orange nail varnish and offered to do Ms. Conteh’s nails. Aminatta had come to Kissy from a crowded low-income neighborhood in the city, mute and immobile with a depression that had never been treated. After a couple of months at the hospital, on regular antidepressants, she smiled and held her own hands out for Ms. Conteh to do the polishing. “You can do things for people,” the student nurse said as she painted.In the airy ward behind them, some patients lay unresponsive in their beds, while others did their laundry at a standpipe and tried to engage trainee nurses in boisterous conversation on topics including lunch, visitors and the possible return of the messiah.Partners in Health does not usually work in the field of psychiatric care, or in capital cities; it focuses on delivering services in the most underserved parts of the countries where it works. But in 2016, Dr. Bailor Barrie, now the organization’s country director in Sierra Leone, and a few colleagues happened to pay a brief visit to Kissy.Resting in the women’s ward of the hospital, which since 2014 has worked with Partners in Health to update its facilties.Patients played on a soccer field built as part of a an effort to introduce therapeutic options at the hospital.“From the moment we walked in, it was so miserable, so sorrowful, that it was clear that we had a moral imperative to be involved,” Dr. Bailor said.The organization and the health ministry agreed to work together on rehabilitating Kissy. The effort involved not just physical renovations but a significant shift in perception of mental illness as a public health problem like any other.The ministry hired Dr. Eze from Nigeria and another psychiatrist, a Sierra Leonean who had recently returned from years in the United States, to be the faculty for a handful of medical students who were newly willing to consider stints at the transformed clinic.Partners in Health has spent $2.5 million at Kissy over four years on renovations, drugs and a laboratory and on earning accreditation as a teaching hospital. The complex now includes a soccer field, an occupational therapy center where patients play board games and gather for group therapy, and a playground for the children’s clinic.The Kissy hospital project became a favorite of Dr. Paul Farmer, the organization’s co-founder, who died recently. In a conversation with a reporter shortly before his death, he called it “just the most fantastic story,” evidence of what was possible not just in Sierra Leone but across the global south.When Mattia Jusu qualified as a doctor and was given his assignment by the health ministry in 2019, he was horrified to learn that he had been posted to Kissy. “I was expecting a very short stay,” he said with a laugh. “But a few months into coming, I started to change my mind.”Some patients were calmer and more engaged with each passing day, and he began to see the power that mental health care could offer people who had been trapped in treatable but untreated illness for years. He is on track to be certified as the first domestically trained psychiatrist in two more years.Across the continent from Sierra Leone, in Ethiopia, there is a clue to both what the residency program may one day produce and a reminder of how long it may take. There, for the past 18 years, Addis Ababa University has run a program to train psychiatrists. The first group graduated in 2006 — seven of them, for a country of 115 million people. The program has grown steadily since then, so that there are now psychiatrists in most of Ethiopia’s major hospitals, a once-unthinkable level of coverage, said Dr. Dawit Wondimagegn, a professor of psychiatry who until recently served as director of the university’s college of health sciences. Still, that is one psychiatrist per million people.“Our fundamental challenge is that psychiatric disorders, and the need for access to mental health care in general, really is not a priority for health policy, in Ethiopia or anywhere in Africa,” Dr. Wondimagegn said. Stigma is pernicious, and it feeds the idea that there is nothing to be done to help a patient who suffers from psychosis or depression.Ethiopia’s model includes psychiatric education for nurses and community health workers who will be the main points of interaction with the health system in rural areas. The W.H.O. advocates for building mental health into primary care, rather than training specialists and building dedicated clinics.The only chains that remain at Kissy secure Ward 9, where male patients deemed to be a risk to themselves or others, or in drug and alcohol rehabilitation, are housed.Patients in the women’s ward of the hospital.The newest construction project at Kissy is a rehabilitation center, which will bring addiction treatment to Sierra Leone for the first time.“We have such high rates of substance abuse — have we ever asked ourselves why it’s happening?” mused Dr. Elizabeth Allieu, the resident who set up the children’s clinic. “All the child soldiers from the war, they have children now. These untreated people, traumatized and not healed, having children. What do you think will happen?”Kissy once turned children away. Now Dr. Allieu’s clinic has helped put programming about mental health in children on radio shows, and a team is starting school outreach.“We can do a lot here,” Dr. Allieu said. “A lot.”

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