Kojiro Tokutake wanted to be a doctor since he was a teenager. His grandmother bought him his first stethoscope when he was in medical school. A decade later, he helped her die.
Tokutake, 33, is a gastroenterologist and, in that role, has inserted permanent feeding tubes in elderly patients, many with dementia, two to three times a week.
“It was just a job,” said Tokutake, who could complete the procedure in 10 minutes. “My colleagues and I talked about who could do it the fastest when we were still getting trained.”
When the same patients kept coming back — sicker and sicker — he began to struggle with the purpose of the procedure. Last year, it hit home.
“I loved my grandma,” he said over tea. “I couldn’t let it happen to her.”
Tokutake contacted me after reading the first-person account of my own 96-year-old grandmother, a dementia patient who was put on a feeding tube without my family’s consent this year. He agreed to share his story because, he said, he hopes Japan can finally have an open discussion about it and, more broadly, about the end of life.
By speaking out against tube feeding, Tokutake is breaking two cultural taboos in Japan: conversations about death and the closed ranks of doctors.
More than a quarter of a million elderly are kept alive in Japan with feeding tubes inserted directly into their stomachs, which isn’t conventional practice in the Western world.
The annual cost of caring for a patient with a feeding tube is about 5 million yen ($49,000), according to Kozo Ishitobi, a vascular surgeon who later became a nursing home doctor and author of the book “Recommending Peaceful Death.” That means Japan is spending about 1.3 trillion yen a year to artificially feed patients, or more than 3 percent of the nation’s total expenditure on health.
“It’s a waste of money and resources,” Ishitobi said. “Doctors need to achieve a better balance between extending life and quality of life and death — and overrule a family’s wishes if they make a bad decision. And individuals need to think more about how they want their life to end.”
Like many countries, Japan faces diminishing financial resources to maintain current levels of medical care for a growing population of elderly. Japan, the world’s third-biggest economy, is also the second most-indebted nation. Its shrinking labor force means there are fewer taxpayers to pay for state-funded care for dependent seniors.
A quarter of Japanese are older than 65 years. By 2060, 40 percent will fall into that demographic, according to National Institute of Population and Social Security Research. As modern medicine has become more adept at delaying death, society has become even more averse to talking about it.
Tokutake was born in 1980 in the mountainous city of Nagano, host of the 1998 winter Olympics. His paternal grandmother, Gin Tokutake, lived at home with the family. One of three children — he has an older brother and sister — the young doctor was his grandmother’s favorite because he was always smiling, recalled his mother, Yoko. When Tokutake was an infant, Gin would change his diapers and take him for walks.
Tokutake decided to become a doctor when he attended a lecture by Japanese cardiovascular surgeon Chiaki Mukai, who became an astronaut aboard the space shuttle Columbia in 1994. His vocation delighted Gin, Yoko said.
“She was so happy that he was going to be a doctor,” Yoko said as she sipped coffee at a cafe in Nagano. “She said she wanted him to take her last pulse.”
At 18, Tokutake went to medical school at the University of Toyama, where he studied for six years and met his future wife. His grandmother gave him cash to buy medical textbooks. He returned to Nagano and spent the first few years as a trainee at Nagano Red Cross Hospitalbefore becoming a full-fledged doctor.
That’s when he learned how to insert feeding tubes. He would first put an endoscope through the patient’s mouth into the stomach to ensure the tube would be positioned correctly, then make a small incision in the abdominal wall to insert the feeding tube from the outside.
“I had no idea about their history,” he said. “My relationship with the patient ended in the operation room.”
He performed two to three surgeries a week to brush up his skill. Most cases were passed to him from other departments, which made the decisions to insert feeding tubes.
“You can do it fast if you get used to it,” he said.
During his training, Tokutake said he vaguely noticed that patients with feeding tubes kept returning to the hospital, often with pneumonia — even though one of their stated purposes was to help prevent lung infections.
As he entered the third year and saw patients independently, his doubt grew.
“It hurts me to see them,” he said.
He began to read books, including “Recommending Peaceful Death” and “Ten Conditions for Peaceful Death: When Do You Stop Extending Lives?” by Kazuhiro Nagao, deputy director of theJapan Society for Dying with Dignity.
Stopping the stream of feeding-tube patients presented challenges. For one thing, Tokutake couldn’t discharge patients without a feeding tube to nursing homes because they would only take stable cases.
“I spent weeks thinking about it and spoke to my colleagues,” he said. “But no one has an answer. If I said, ‘A feeding tube might not be necessary,’ they’d say, ‘But we can’t discharge them without a feeding tube.’”
Tokutake had pursued an interest in endoscopy to detect and treat early-stage stomach and colon cancer. During his 18 months training at Japanese Red Cross Akita Hospital in northern Japan, his grandmother’s health deteriorated.
She was hospitalized four times in as many years for bladder cancer early last decade, said Yoko, who cared for her mother-in-law at home.
Grandmother Gin also began to have delusions and her symptoms worsened as she returned to the hospital for surgery to treat cancer, she said. At night, she would walk around, distressed, saying she was searching for a lost baby, Yoko said.
It’s possible she was recalling the time when her first husband died in World War II. As a new widow, Gin was told by her father-in-law that she would have to leave her newborn son behind if she wanted to return to her own family. Or she could stay with her baby and marry her late husband’s younger brother. Tokutake’s father, Yasuaki, said she stayed and got married because she didn’t want to leave him.
After Gin’s second husband died in 1981, she stayed active, enjoying cooking noodles, looking after grandchildren, gardening and traveling with her children.
In 2007, when her Alzheimer’s disease progressed, Gin was moved into a nursing home and gradually lost her ability to walk.
“We wanted to continue caring for her at home, but the burden increased as the disease progressed,” Yoko said. “We felt so sorry because we felt as if we were kicking her out of her own home and couldn’t fulfill the duty to care for her at home.”
In April 2012, she was hospitalized and put on a drip because she was no longer eating and drinking. She was put in a ward with several bedridden elderly people on feeding tubes, Yoko said.
“Nurses went to the bedside of these elderly people, who were lying unconscious, and would say, ‘Good morning, breakfast is ready’ and then insert a liquid meal,” she recalled. “Their faces were glowing because of the nutrition. My family talked about it and we didn’t want her to be like that.”
Hospitals historically inserted feeding tubes to prevent lung infections caused by food and liquids going down the respiratory, rather than digestive, tract in very sick patients. The practice was supported in Japan by a so-called affordable health system built in the 1960s to broaden access to acute care when tuberculosis was the nation’s top killer.
Now, as the government tries to trim medical expenses, hospitals receive less financial support for long-term patients and are eager to move the elderly infirm into nursing homes. Feeding tubes make them easier to manage, saving nurses the time to spoon-feed patients and reducing infection risk.
Tokutake said that Gin wouldn’t want to end this way.
“I remember when Grandma and I were watching TV together at home back when she was in her 70s,” Tokutake said at the end of his morning shift at the hospital. “She’d just seen on TV a patient plugged to tubes and said she didn’t want that for herself. So it was easy for me to decide what to do when the time came.”
With his family’s approval, he had Gin transferred to his hospital, where he could supervise her medical care. He invited his father and his father’s younger siblings to a meeting to discuss his 91-year-old grandmother’s end-of-life care.
“I told them that I’d only give her enough hydration to replace the fluid she was losing naturally, which was what she’d wanted, and they agreed,” Tokutake said. “I pressed my view to my family members there again because it’s stressful for families to stop medical intervention and let relatives go.”
Family members trusted his decisions because they knew extending Gin’s life unnaturally wasn’t desirable or consistent with her wishes, Yoko said. They’d also read a book about dying recommended by Tokutake.
“We were happy that he offered to care for Grandma at the end of her life,” she said. “She would have been happy, too, because it was what she wanted.”
I visited Tokutake last month at Nagano Prefectural Suzaka Hospital, where he has been working for about a year. He sees as many as 10 patients a day for various procedures.
Each week, he sees at least two patients with feeding tubes that had been fitted by others and now require replacement or adjustment. He pulls out a mushroom-like plastic catheter tip and a bumper that binds the stomach wall though a pencil-size hole from the abdomen and inserts a new device.
During my visit, Tokutake had a 76-year-old patient who had been fed through a tube since May after suffering a stroke. The man was hospitalized a second time recently because of pneumonia, Tokutake said.
My own grandmother, meantime, remains bedridden at a hospital in Nara, western Japan. She has been on a feeding tube for 10 months. She will be 97 on Dec. 27.
Even though Japan has the world’s longest life expectancy, at 83 years, it rates poorly for quality of death. The country ranked 23rd of 40 nations in a study in 2010 by the Economist Intelligence Unit assessing the cost and quality of end-of-life care, and how well societies faced issues of death.
Withholding food and fluid isn’t painful for those who are dying, according to the Hospice Foundation of America, a non-profit organization in Washington that educates the public and health professionals on hospice care. Food deprivation provokes changes in metabolism that result in higher levels of ketones — chemicals produced when fats and fatty acids are converted into energy — leading to a mild sense of euphoria, according to the foundation.
However, administering nutrients and fluids artificially can potentially lead to medical complications and increase suffering for patients near the end of life, the American Academy of Hospice and Palliative Medicine said in a position statement released in September.
Originally developed to provide short-term support for patients who were acutely ill, feeding tubes that were inappropriately installed have been blamed for complications ranging from diarrhea and pressure sores to fluid overload and agitation and confusion. Some patients may need to be physically restrained to prevent them from removing the tubes, the academy said.
Of the 260,000 patients in Japan estimated to be fed through a tube, more than 90 percent are bedbound, according to the survey by Japan’s hospital association. They are, on average, 81 years old and nourished via tube for 2.3 years.
Tokutake started his grandmother’s care with a daily drip infusion of 500 milliliters of fluid and oxygen to support her breathing. Five days later, her heart began to falter and her response deteriorated. He cut her fluids to 200 milliliters a day. Over the following two weeks, her blood pressure fell and her eyes lost their focus.
“It was like watching a candle flicker out very slowly,” Yoko said. “It was really hard to see her gradually die. What a difficult process a human has to go through to die simply.”
Gin’s weight, once at 55 kilograms (121 pounds) for 1.60 meters (5 feet, 2 inches), dropped during hospitalization. Her eyes were sunken. Tokutake’s parents fretted that she was in pain.
Even though Tokutake was following Gin’s wishes, he still questioned his decisions, knowing he could extend her life by a few weeks with more fluid.
“You can diagnose dying people with diseases, plug them to tubes and treat as for as long as you want,” Tokutake said. “Some people call that medical care. But when their condition dictates it, you need to understand that the organs are degenerating and it’s time to let them die.”
In Japan, lawmakers are working on a bipartisan bill for submission to parliament that will protect doctors from being sued if they refuse to administer life-saving treatments in terminal cases with wills.
As an attending doctor, Tokutake spends one to two hours explaining all options for end-of-life care to his patients and their close relatives. That’s not common in Japan, where doctors tend to issue directives rather than engage in conversation, he said.
If Japanese discussed death and expressed their wishes before it’s too late, it would reduce the number of new feeding tube cases. Even though only 3.2 percent of Japanese have prepared a living will, more than 70 percent said they’d prefer not to be tube-fed if they suffered from terminal cancer or severe dementia, according to a survey by the health ministry in March.
Nowadays, Tokutake tries his best to avoid inserting a new feeding tube, unless he’s asked by families or other doctors. He says he empathizes with the relatives’ struggle.
“I respect what families choose, even if they choose to insert a feeding tube,” Tokutake said. “But I didn’t want to let it happen to my family.”
On the morning of May 26, 2012, Gin Tokutake’s breathing stopped and she died peacefully, surrounded by her family.
Her death served as an example of a more peaceful alternative to feeding tubes, and Tokutake said he’s grateful to have been part of it.
“I put my emotions aside and dealt with her as her doctor,” Tokutake said, after a pause. “What I did for my grandma is also what I would want if I was put in her situation. I could do it because I was her grandson and further removed from her than her children. I’m not sure I could do the same for my parents.”
To contact the reporter on this story: Kanoko Matsuyama in Tokyo firstname.lastname@example.org