One day last month, a young woman with a small computer sat next to Alphonsine Umurerwa in her living room. The young woman asked questions, listened carefully to the answers and took notes.
She learned that Alphonsine’s 23-year-old daughter Sandrine had been very sick for about a year. Over time, the daughter became so weak she stopped leaving their home in Kigali, Rwanda’s capital. The family thought she had the disease malaria.
Medicines did not help Sandrine’s condition. In March, she died.
The young woman asked Alphonsine a lot of questions about her daughter: When did Sandrine begin to feel weak? Was her temperature a lot higher than normal? Did the color of her skin ever turn yellow?
Each answer led to another question.
This questioning was a “verbal autopsy” — a one-on-one meeting in which a trained health worker asks a close relative or caretaker about someone who recently died. About 50 countries have attempted verbal autopsy projects, and the list is growing.
This week, Bloomberg Philanthropies announced that it will provide $120 million over the next four years to continue support for such projects in 20 countries, and add five more. That amount includes money to pay for verbal autopsies. It will also pay for cancer registries and other programs to help developing countries collect data about the health of their citizens.
Bloomberg Philanthropies provides financial support to health data programs around the world. It was started by former New York City Mayor Michael Bloomberg.
Lack of death records
The work is badly needed, experts say.
An estimated 60 million people worldwide will die this year, and half will have no death certificates or other record describing what killed them.
That means the common understanding of disease and death rates, especially in the developing world, is often based on estimates. So are decisions officials make about which health problems to fight first.
However, knowing exactly what kills people can be difficult.
For example, in the United States, doctors are required to sign death certificates. Yet recent studies suggest that some doctors list some conditions as a default. That is one reason why some experts believe heart disease has been over-reported as a cause of death among Americans.
But it is far more difficult to collect data in countries where only a small percentage of people die in hospitals, or with doctors present.
In Rwanda, only an estimated 20 percent of deaths take place in hospitals, according to the Rwanda Medical and Dental Council.
The current verbal autopsy campaign was launched more than 50 years ago, as small research projects in Africa and Asia.
Million death study
One important study was carried out in India in the late 1990s. Trained interviewers — not doctors — went into the homes of people who had recently died. They asked close relatives about the patient and events that led up to a loved one’s death. Small teams of medical experts later used the answers to identify the cause of death.
The Million Death Study, as it was called, suggested that India had far more malaria and smoking-related deaths than the World Health Organization had estimated.
Verbal autopsies are not perfect. They depend on family members, many still in mourning, to clearly recall medical details. And the information provided can often depend on who is answering the questions, what questions are asked and what experts think the answers mean.
Verbal autopsies “are much better to do that than do nothing, which is the only alternative” in some countries, said Peter Byass. He is an expert on verbal autopsies. Byass works as a researcher at Sweden’s Umea University.
A New York-based organization, Vital Strategies, began working with the Rwandan government in 2015 to develop a verbal autopsy program.
The project trained government health workers — who already provide health care in homes — to carry out the verbal autopsies.
About 2,700 verbal autopsies have been completed in nine areas of the country.
At first, neighbors sometimes objected to the verbal autopsies as invasive. But over time, most people have come to accept them.
Sandrine’s cause of death
The young woman who did the verbal autopsy of Sandrine Umwungeri was Leonie Mfitumukiza. She had met Sandrine’s mother through her job as a community health worker. After giving the family several months to rest and mourn, she had come to ask about Sandrine’s sickness.
Often stopping to express sympathy, Leonie followed the normal set of questions about Sandrine’s health. The information she gathered will be put through a computer algorithm to give a cause of death.
The seriousness of the discussion was broken when a family friend walked into the home carrying a 2-year-old girl who was laughing. It was Blessing, Sandrine’s daughter, now being raised by her grandmother.
After the interview, Leonie said she believes Sandrine died of diabetes, not malaria. But she noted her job that day was to gather information, not to pass judgment on the cause of death.
I’m Jonathan Evans. And I’m Caty Weaver.
Christina Larson and Mike Stobbe reported this story for The Associated Press (AP). George Grow adapted their report for VOA Learning English. Mario Ritter Jr. was the editor.
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Words in This Story
verbal – adj. of or involving language or words
autopsy – n. an examination of a body after death to identify the cause of death
data – n. factual information
default – n. a choice made usually without active consideration
according – adv. as stated by or in
interviewer – n. someone who asks questions, especially as part of a job
alternative – n. another possibility
algorithm – n. a set of rules to be followed in problem-solving operations, usually by a computer
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