Families of people who died of COVID at home in Japan launch group to demand answers

TOKYO -- Relatives of coronavirus patients who died at home without the necessary medical care have established a bereaved families' association to exchange information and uncover the exact events leading to the deaths of their loved ones.

Association co-chair Kaori Takada, 46, said, "Many lives that could have been saved were lost because of neglect. We must not let anyone else suffer the same fate."

Initially, the Japanese government set a "hospitalization in principle" policy for people infected with the coronavirus. However, the rapid increase in patient numbers made it difficult to get every patient a hospital bed. To avoid spreading the infection to family members, more and more people were placed in hotels and other facilities provided by the local government. As the pandemic worsened, however, the number of people who were forced to recuperate at home increased.

Takada's 43-year-old brother died while convalescing at home in Naha, Okinawa Prefecture. The Osaka Prefecture native had moved to the Japan's southernmost prefecture about 10 years ago, where he lived alone and ran an izakaya pub.

According to the Okinawa Prefectural Government and other authorities, Takada's brother tested positive on Aug. 5, and the Naha municipal public health center, which learned of his case on Aug. 6, called him once that day and twice on Aug. 7, but was unable to reach him. When the health center called him on the morning of Aug. 8, there was still no answer, and his phone automatically switched to his answering service. Shortly after 3 p.m. that day, health center officials and police officers entered his house and found him dead on the bed.

According to the prefectural government, if they cannot reach coronavirus patients for a whole day, normally public health center staff will visit them. However, the visit to the man's home was delayed due to the center's reportedly heavy workload at the time. Takada's frustration still lingers: "If he had gotten proper treatment, we could have saved his life."

Yuko Nishizato, 27, who lost her 73-year-old father in the city of Saitama on Aug. 13, also still feels unsettled by the circumstances of his death. Her father was confirmed positive on Aug. 8, but the local public health center asked him to stay home. Although Nishizato's family frequently appealed to the public health center and other authorities to admit him to hospital, he was instructed to continue recuperating at home.

Nishizato's father never saw a doctor nor received treatment at a medical institution after his diagnosis until a sudden change in his condition led to his death on Aug. 13, except for a prescription for antipyretic drugs on Aug. 10 from the clinic where he had got his PCR test.

Nishizato and Takada had an opportunity to talk in September, and realized that they felt the same anger and frustration over the medical system's inadequacy and the government's response.

Nishizato and Takada thought that there could be other bereaved families who feel the same way, but the personal information of the deceased and their bereaved families is not released. So, they decided to set up the "association for bereaved families of neglected patients at home" group and call for people to join.

The pair used the word "neglected" for the association name because they believe that their family members died without receiving necessary health monitoring and care. The term also deliberately encompasses those who died after authorities had told them they were "under hospitalization adjustment" or "at a stage prior to a home recuperation decision," as well as those who had been assigned to home convalescence.

The full extent of COVID-19 deaths at home remains unclear. According to the Ministry of Health, Labor and Welfare, 141 deaths were recorded as "at home" from January to September this year in its "Health Center Real-time Information-sharing System on COVID-19" database, or HER-SYS.

However, according to sources involved, the actual number is believed to be higher, as workers were sometimes too busy to record that a patient had died at home.

The association will also consider requesting the government to disclose information on the responses to specific cases and encourage improvements. They will also accept individual consultations, mainly through online meetings held about once a month. Participants will get email invitations (from jitakuhouchishi@gmail.com), and information will be disseminated through social media.

Nishizato said, "I think the government thought that since there were so many infected people, it was inevitable that they'd be overlooked. If they had been a little more attentive, my father wouldn't have died."

Takada is asking people to join the association, saying, "There are some local governments that do not actively disclose information to the bereaved families, and I think there are some people who are crying themselves to sleep."

(Japanese original by Takuya Murata, Lifestyle and Medical News Department)