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Data center fire threatens to undermine terminal patients' end-of-life wishes

Published: 30 Sep. 2025, 19:45

A patient’s family member holds the patient’s hand in a hospice ward at a hospital. [JOONGANG ILBO]

Havoc persists throughout Korea with the national system down after a major data center fire, and patients who have chosen not to go through life-prolonging measures are having their wishes ignored — because the system wouldn't show whether they agreed to them or not.

One man in his 60s in Busan almost had his wish overlooked during this predicament.

The man, who had been fighting terminal stomach cancer, was recently transferred from a general hospital in Busan to a university hospital in Seoul after his condition worsened. His gastric ulcer penetrated the serosa, the outermost layer of the stomach wall, resulting in a perforation that required emergency surgery.

Doctors at the university hospital determined that he was already near the end of life and decided it was best not to operate. The patient had already signed an advance directive refusing life-sustaining treatment in April. But the hospital could not verify the document because the government’s Life-Sustaining Treatment Information Processing System — which stores such directives — was down.

On Tuesday morning, medical staff persuaded the patient and his family to draft a new document expressing his refusal of life-prolonging care.

The outage, caused by a fire at the National Information Resources Service, threatened to undermine terminal patients' ability to ensure their end-of-life wishes are respected. Normally, patients can register their decisions in advance directives or life-sustaining treatment plans, which are stored in the government database and accessed when needed.

Currently, both registration and retrieval are unavailable.

“Phone calls are pouring in. It’s a state of chaos,” said Yoo Shin-hye, the head of the Clinical Ethics Center for Palliative Care at Seoul National University Hospital (SNUH).

Last year, more than 70,000 people in Korea died without life-sustaining treatment — about 50 people per day. Conscious terminal patients, like the stomach cancer patient, are now being asked to reconfirm or re-sign their directives.

A medical professional walks by an emergency room in a general hospital in downtown Seoul on July 2024. [YONHAP]

But unconscious or semiconscious patients pose a greater problem. Even if a patient has signed a refusal of life-sustaining treatment, decision-making authority shifts to family members. Two direct relatives can act on behalf of the patient based on presumed intent, or the entire family can decide collectively — which may diverge from the patient’s original wishes.

“More people live alone today, and many have severed ties with their families,” said Choi Won-ho, a nurse at the Clinical Ethics Center for Palliative Care at SNUH. “Even if they’ve signed a refusal, there’s no way to confirm it. And if there’s no family to decide on their behalf, we’re at a loss.”

This has led to tense situations. On Sunday, a nursing home called the granddaughter of an 80-year-old stroke patient to say her grandfather’s condition had suddenly worsened and asked whether he had signed a refusal of life-sustaining treatment. She believed he had but checked with her family just in case.

In the meantime, he was rushed to a large hospital emergency room and recovered after treatment. “If my grandfather’s condition had taken a turn for the worse, would he have been given life-sustaining treatment?” she said, relieved.

At SNUH on Tuesday, a man in his 70s surnamed Choi signed a letter of intent. “I’ve had heart surgery and other health problems, so after much thought, I signed the letter, but I was told it could take two to three months to register it in the government system. It’s frustrating,” he said.

An ambulance is seen in front of an emergency room at a general hospital in Seoul on Oct. 1, 2024. [KIM SUNG-TAE]

Even conscious, critically ill patients suffer additional distress. They may have painstakingly prepared a document refusing life-sustaining treatment, but when medical staff have to ask again and explain the process, it can inflict further psychological pain.

The National Agency for Management of Life-Sustaining Treatment is encouraging conscious patients to sign documents directly and is reviewing the use of advance directive registration cards as a workaround.

“About half of the patients who stop life-sustaining treatment under advance directives are unconscious,” said Cho Jung-sook, an official of the agency. “If decisions are left to families, the patient’s wishes may not be respected.”

This article was originally written in Korean and translated by a bilingual reporter with the help of generative AI tools. It was then edited by a native English-speaking editor. All AI-assisted translations are reviewed and refined by our newsroom.
BY SHIN SUNG-SIK [[email protected]]