A quarter of a million bedbound elderly people are kept alive in Japan, often for years, by a feeding tube surgically inserted into their stomach. A few months ago, my 96-year-old grandmother became one of them.
Feeding tubes are so common in Japan that my family wasn’t initially consulted about the procedure, which is effectively irreversible. When my mother walked into Grandma’s room the next morning and saw a tube, she dropped to her knees by the bedside and stayed there for hours, crying.
“I am sorry. I didn’t mean to do this to you,” my mom repeated over and over.
As medical science becomes more sophisticated, we’re finding new ways to prolong life. When my grandma, Hisako Miyake, was born in 1916, life expectancy in Japan was around 43 years; now it is 83, the longest in the world.
When it comes to death, Japan doesn’t score so well. In 2010, the Economist Intelligence Unit ranked 40 developed and developing countries on “quality of death,” based on criteria such as end-of-life cost and care and, more broadly, how well societies faced issues of death. Japan was 23.
In Japan, there’s not much talk about death. Living wills, or even discussions about end-of-life decisions, are rare. Historically, hospitals focused on extending lives of patients with little chance of recovery, said Tetsuo Kashiwagi, president of Japan’s Hospice Palliative Care Foundation.
“That’s still the mainstream,” he said.
The use of feeding tubes at the end of life, which is not conventional practice in the western world, is a way of life in Japan. Twelve percent of patients who get the procedure are fed this way for five years or more, according to a survey conducted in 2011 by Japan’s hospital association.
When my grandma -- or obaachan, as I call her in Japanese - - was born, one out of 20 Japanese was over 65. Now it is one in four. By 2060, the proportion will swell to 40 percent.
The aging population has the potential to bankrupt Japan, now the world’s third-largest economy after being surpassed by China in 2010. As the proportion of the working population declines, Japan, also the second most-indebted economy, has fewer salary-earning taxpayers to foot the bill for dependent seniors, especially because the birth rate is low and society doesn’t encourage immigrant workers.
Born in 1916
Grandma spoke often of her own determination to live to 100. She was born on Dec. 27, 1916, about 18 months after World War I broke out and the same year Woodrow Wilson was re-elected president in the U.S. She grew up in a wealthy household -- her family was the dominant rice wholesaler in the historic city of Nara, Japan’s capital 1,300 years ago. The area, called Naramachi, retains many relics from its past, including wooden residences called Machiya, long, skinny buildings that doubled as shops.
When I was a teenager, she told me how she’d bump along the road in a rickshaw to the station where she took the train to Osaka to attend college. That would have been in the 1930s, when few Japanese women were getting higher education. She also told me how her pocket money was enough to buy western pastries and candies.
Grandma’s two-floor Machiya, under a pagoda-style tiled roof, was a wonderland to me. The complex, built in the early 1800s, is set inside a 700-square-meter (7,500-square-foot) plot surrounded by a mud wall. At the entrance, there was a telephone box, one of Nara’s first. Its many rooms, chambers, staircases, passageways and doors were perfect for hide-and-seek.
The other attraction of visits to Grandma was her fondness for indulging my sister, brother and me with sweets.
Life as Grandma knew it came to an abrupt end during World War II, when the government instituted food rationing and took control of rice distribution, effectively closing the family’s business. Over generations, rice traders plowed their profit back into buying land. When the U.S. occupation forces moved in, the farmland was taken away and redistributed to growers in 1947.
My grandma used to say that she and her friends would complain that they couldn’t find anyone to marry because all the bachelors were at war. Women stitched notes with their names and addresses inside good-luck charms dispatched to soldiers.
My grandfather received one from Grandma when he was stationed in Manchuria, China. Sumio Miyake was a graduate of the Imperial Japanese Army Academy in Tokyo. He was an ambitious colonel who specialized in working out complicated mathematical equations used to predict the trajectory of a bomb. Grandpa was not only an elite officer, he also came from a higher class -- a descendant of a samurai family with acclaimed archery skills.
When he returned to his military training in Osaka, he traveled about 30 kilometers (19 miles) to Nara to thank her. They fell in love. They ultimately had three children; my father, Takashi, was the oldest.
During and after the war, the family’s fortune was dissolved by the government.
“We became poor all at once,” my grandma said in an interview with a magazine called Sun in 1998. That wasn’t her family’s only wartime tragedy: Grandma also lost her only brother, Hiroshi, who was sent to Manchuria to fight. His body was never found. He was declared dead in 1946, when he would have been 20.
Steak for Breakfast
After the war, a dozen of Grandma’s relatives lived in the family home. Grandma ran the household for the first time without servants, and she struggled. Still, she insisted her children enjoy English tea for breakfast, meat and Western-style meals on some occasions. When her second son, Tsutomu, brought his university friends to the house in the 1960s, she cooked them steak for breakfast.
“She once told me she knew she had to buy cheaper meat,” my mom said, “but her mouth instinctively told the meat shop the opposite.”
She probably kept the standard high so as not to lose face.
When I think of her, I picture her standing in her kitchen. She always wore an apron tied around her abundant waist while working in the home and liked to prepare extra food, which she gave as sacraments to the gods and spirits of ancestors she worshiped every day. She also insisted on giving expensive foods and delicacies as gifts to her extended family.
My grandpa died of a heart attack in 1984. My grandma lived alone in her home until 11 years ago, when she started to lose control of her bladder. At the age of 85, she moved in with my parents.
She took only a few things with her. Among them: the postcard Hiroshi had received from the army in Osaka advising the date he was to be interviewed for military service.
Three years after she moved in with my parents, she had a compression fracture of her spine, possibly compounded by her weight -- 60 kilograms (133 pounds) on a 1.58-meter (5-foot-2) frame. She was hospitalized for three months. Her decline hastened after that. She became frail, walked around the house with a stick and used a day-care service twice a week for bathing, which my mom wasn’t strong enough to help her do.
She became fully dependent on my parents, especially my mom, her daughter-in-law. Each time I went back to see my parents in Nara -- I’d visit every few months -- Grandma had regressed physically a little more.
Fed With Spoon
She stopped eating. She said she didn’t want to use her chopsticks, so my mom started to feed her with a spoon. It sometimes took more than an hour because she chewed so much.
“I remember she said it would be so easy if she could hop to the afterlife instantly,” my mom said. “I told her that the human body isn’t designed to go on for more than 90 years -- that’s why her body can’t function the way she wants it to. Her deterioration is natural.”
Still, perhaps because her decline was happening in slow motion, no one thought to ask if she had any end-of-life wishes. None of us even imagined tube-feeding.
Discussion about death within Japanese families may be difficult in part because Japanese aren’t very verbal. They tend to use more ambiguous, less direct speech, said Kashiwagi, president of the Hospice Palliative Care Foundation.
‘Honne and Tatemae’
That’s because Japanese tend to protect other people’s feelings to avoid conflict and enjoy harmony. It’s the base of the concept called “Honne and Tatemae” in Japanese: the difference between personal feelings and what people express publicly.
Views on life and death also changed over the past several decades because Japan focused on economic growth, which is materialistic, said Yoshinori Hiroi, a professor of health-care public policy at Chiba University.
“Japanese used to understand the world of life and death through Shintoism and Buddhism,” said Hiroi. Focus on economic growth after the war prevented Japanese from accepting aging and death, he said.
Grandma’s mind started to fail. She often saw dead relatives, my mom said, and her memory started to go.
“She probably realized death is nearing when she felt so tired and began to have delusions,” my mom said one afternoon in May. “She must have been terrified.”
Last December, nine days before Grandma’s 96th birthday, my mom sent me a text message saying Grandma had been rushed to the hospital in an ambulance. Her temperature had soared to 40 degrees Celsius (104 Fahrenheit) and she was drowsy.
She was admitted to the same hospital where her husband died. My 66-year-old father saw that as a bad omen. Grandma fought on, and began eating again when my mom fed her mushy food, slowly. I rushed from Tokyo to see her and by the time I arrived, her condition was stabilizing.
One afternoon, my parents cut short their visit while Grandma slept peacefully. When my mom returned the next morning, she was shocked to find a tube had been inserted into Grandma’s stomach through her nose. My mom was furious. Someone outside the family -- a nurse -- had made a decision that, as my mother saw it, could keep Grandma alive in an unnatural way for years.
My parents weren’t prepared for this.
Choked on Dinner
Mom stormed off to find the nurse responsible for the tube and chided her for not trying hard enough to feed Grandma. Grandma had choked on her dinner the previous evening, the nurse responded.
The next day, the color had returned to my grandma’s face and she was more responsive, shouting “cold” when the family touched her with cold hands. She also smiled more frequently when the family talked about her past and mumbled words as if to join the conversation.
“We were so surprised,” Mom said. “She was probably getting more energy from the drip than from the mushy food she was getting though the mouth.”
The family decided it would be best to replace the nasal tube with one inserted directly into her abdomen because breathing was uncomfortable for her.
On Feb. 1, she was moved to another hospital, near my parents’ house, for the surgery. Three days later, she had an endoscopy, in which a tiny camera is inserted through the mouth to peer inside the esophagus and stomach, to monitor the operation. The procedure took less than an hour and showed a perfectly functioning upper gastrointestinal tract.
With the stomach tube, she may keep going for months, if not years, while her organs continue to absorb the nutrients they need to sustain her.
Of the quarter-million patients in Japan estimated to be fed through a tube like Grandma’s, 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.
In the U.S., feeding tubes are more commonly used in patients with swallowing difficulties, such as those with neurologic conditions after a stroke, or people treated for cancer of the oral cavity or esophagus, according to the American College of Gastroenterology. For late-stage dementia patients, who have lost their ability to swallow, the intervention is controversial, the group says. It recommends assessing life expectancy and quality of life before making a decision.
Quality of Life
The American Academy of Hospice and Palliative Medicine and the American Geriatric Society recommend severely demented patients be fed by mouth. In Japan, the Geriatrics Society published guidelines in June 2012 that gave doctors leeway to reduce nutrients and remove feeding tubes with consent of the patient or the family, responding to public concern about quality of life.
A Japanese study that tracked the prognosis of 931 geriatric patients with a tube inserted directly to their abdomen said about 60 percent died of pneumonia, 14 percent from cardiac failure, 3 percent from cancer and 22 percent from other reasons.
More than 70 percent of Japanese said they’d prefer not to be fed through a tube into the stomach if they suffered from terminal cancer or severe dementia, according to a survey by the health ministry in March. Although about 70 percent supported preparing living wills, only 3.2 percent did the work, it said.
My grandma’s doctor said he would refuse to remove the tube even if my family asked that Grandma be fed orally.
“Once it’s in -- whether it’s through nose or direct into the stomach -- you can’t remove it,” my father said in May as we chatted beside Grandma’s bed. “It’s too late to make a call even if you want to.”
Japanese doctors are reluctant to stop life support on terminal sufferers because they could be prosecuted for killing patients. Doctors at Imizu City Hospital in Toyama, central Japan, were investigated for murder after the hospital found in 2006 that they had removed respirators of terminally ill patients, which led to more public discussion about setting rules for death with dignity.
“Japanese elderly are forced to live longer, and that is an abuse of medical care,” said Kanao Tsuji, director of Suidobashi Higashiguchi Clinic in Tokyo. “Doctors are making decisions based on their values, which are different by doctor. Japan needs to create an institution with specialists that can document wishes for patients and a law that protects the elderly’s dignity.”
My grandma’s cousin, Hiroko Matsuyama, died three years ago at age 96. She had cancer removed from her stomach to relieve pain shortly before her death.
“I don’t know how the family and the doctor concluded that it was better to operate on her,” my father told me. “I wondered if there was a way to palliate her instead. Surgery seemed too much at such age.”
In the U.S., an average of $69,947 was spent on chronically ill Medicare patients in their last two years of life in 2010, according to the Dartmouth Institute for Health Policy and Clinical Practice. Expenditures were the highest in Los Angeles, with $112,263. Caring for patients with chronic illness in their last 24 months accounts for almost a third of total Medicare spending, the institute found.
My grandma’s monthly out-of-pocket cost was about 100,000 yen ($1,005) for the first five months of her hospitalization, including consumables such as diapers and food. That’s 10 percent of the bill. The government picked up the remaining 90 percent through a universal health-insurance plan that sets price limits on fees and services.
- Special Report: The Future of Retirement
Japan introduced an affordable health system in the 1960s to broaden access to acute care when tuberculosis was the nation’s top killer. Cancer and cardiovascular disease now are the most common causes of death. Those are more complicated to treat, so the system is overloaded with patients and the cost to the government is escalating.
In May, the out-of-pocket cost for Grandma’s care increased by 65,000 yen to 165,000 yen a month, reflecting a reduction in the reimbursement the hospital gets from the government for patients in long-term care. The bill exceeds Grandma’s government pension, which is like Social Security in the U.S., so my father picks up the 20,000 yen-a-month difference.
I am 33 years old and deeply respectful of my elders, so many of whom built modern Japan and continue to be vital and productive. One study, in the U.K., found that seniors contribute more to society than they cost. The charity group Royal Voluntary Service in Cardiff reported in March 2011 that people older than 65 made a net contribution of 40 billion pounds ($61 billion) to the U.K. economy in 2010 through taxes, spending, providing care and volunteering, and that the contribution will grow 93 percent to 77 billion pounds by 2030.
I don’t want Grandma to die. She’s comfortable and still seems to have some connection with her shrinking world. And her children -- my father Takashi, my uncle Tsutomu and my aunt Megumi -- look so happy to see her during their frequent visits.
But Japan -- which spent the equivalent of 9.6 percent of its gross domestic product on health care in 2011, about half the 18 percent spent in the U.S. -- won’t be able to afford to give me the same level of care. Japanese born in 1955 and after will get fewer benefits -- pension, health care and elderly care -- than they have paid in taxes and contributions, according to a study by the Cabinet Office’s Economic and Social Research Institute in January 2012.
Caring for Grandma the past 11 years has taken its toll on my 61-year-old mom, Ritsuko, who weighs 90 pounds and is barely over 5 feet tall. She would run her errands, help Grandma to the toilet, sponge bathe her and change her adult nappies.
My mom was diagnosed with early-stage breast cancer in January. She had a lumpectomy, followed by radiation, and has taken on female-hormone-suppression therapy to prevent recurrence. Already a slender woman, she lost weight after the surgery and a blood test showed elevated levels of liver enzymes and bad cholesterol.
Because her first doctors didn’t treat her immediately, she switched physicians late last month and was hospitalized to cure the liver damage. She has been in the hospital for more than three weeks now and is expected to be discharged once the liver enzymes drop to the normal level.
Talking About Aging
My mom and I have been discussing aging, dying and the impact on our economy over the years, and a lot more recently. My grandma and her peers lived much longer than anyone could have been expected at the time of their birth, so no one was prepared to look after them for so long, Mom said.
My mom and dad’s generation, who took care of their parents and witnessed the burden it created, think differently, she said. Their dream is “pinpin korori,” or PPK, which means to live long, healthy lives and to die naturally without suffering from illness.
“Looking at how they lived to be so old, as well as their deaths, makes us think we need to do better so as not to burden the future generations,” she said.
I visited Grandma recently at her hospital bed in Nara, a mile from where she grew up. She was curled up like a baby under a blanket.
Her creaseless face belies her 96 years. Nurses turn her over every hour or two to prevent bed sores. She weighs 90 pounds because her overall intake is about 600 calories per day, equivalent of two McDonald’s cheeseburgers.
She shares the room with an 83-year-old woman who talks to herself and sings songs, and an 88-year-old woman who says very little. Her second roommate wears cotton gloves that are tied to her bedframe so that she can’t pull out the feeding tube inserted in her nose.
Outside, nurses in light-pink, blue and white uniforms bustle along a dimly lit hallway carrying diapers, trays of tea and medications. Hints of sweat and excrement pervade the air.
Grandma’s diaper is changed every few hours by one of the nurses in a light-blue tunic. Another periodically dabs her toothless gums with a moistened sponge attached to something resembling scissors. She is bathed on Mondays and sponged on Thursdays.
Her hands are closed and tense, making it difficult for me to hold them.
When I said I’d clean her eyes with wet cotton, she replied “thank you.” She smiled when my aunt Kazuko and I talked about her memories. She mumbled something, but the only word we could catch was Chieko. That was the name of her youngest sister, who died six years ago.
Three times a day -- at 9 a.m., 1 p.m. and 4:30 p.m. -- the nurse who does her gums feeds her. That is, she replaces the bottle that drains a 160 milliliter nutrient-rich white liquid through a tube inserted into her stomach.
When liquid food is administered to her, I see Grandma munching her empty mouth as if she’s chewing food. She mostly breathes through her mouth, and seems perpetually parched. When we press a wet wad of gauze to her lips, Grandma sucks on it as if it were nectar.
For a woman who asked everyone to chew 30 times at dinner because she believes it’s good for health, nothing -- neither solid nor liquid -- has passed her lips in seven months. Most probably, nothing ever will.
To contact the reporter on this story: Kanoko Matsuyama in Tokyo at email@example.com