Japonia: O bunicuță muribundă aprinde dezbaterea despre finalul vieții

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Și alte țări îmbătrânesc – România e una dintre ele – dar niciuna atât de rapid ca Japonia. O natalitate catastrofală (1,4, față de rata de înlocuire a populației de 2,1 copii/femeie) și cea mai mare speranță de viață din lume (83 de ani) formează un cocktail social exploziv. Dacă azi 24% din populația țării are peste 65 de ani, în 2060 acest procent va atinge proporția strivitoare de 40%, conform datelor oficiale. „Țara Soarelui Răsare” este cea mai îndatorată țară a lumii, datoria publică depășind de 2,5 ori produsul intern brut. O bună parte din această datorie este înghițită de ultraperformantul, dar costisitorul sistem de asigurări de sănătate și pensii, a cărui finanțare nu mai poate fi suportată de o generație tânără tot mai redusă.

O speranță de viață atât de ridicată aduce și alte probleme: 8 milioane de cetățeni suferă de boala Alzheimer; din aceștia, circa un sfert de milion sunt imobilizați la pat, unii pentru ani întregi, iar circa 10.000 de bătrâni sunt dați dispăruți în fiecare an, unii fără a mai fi găsiți vreodată.

În mod interesant, în această țară în care moartea este cu totul altfel privită decât în spațiul european și american creștin, dificultățile și provocările finalului vieții au fost până acum un subiect tabu. În Japonia, avortul (legalizat în 1949) este un lucru banal și nu poartă, în general, stigma morală din alte zone ale lumii, iar sinuciderea rituală a fost considerată de milenii un act de onoare; cu toate acestea, foarte mulți bătrâni imobilizați la pat sunt hrăniți intravenos cu anii, prelungindu-se, adesea artificial, viața.

De notat că, din perspectiva bioeticii creștine, pe care o împărtășim, se face diferența clară între actul îngrijirii unui bolnav în incapacitate și prelungirea inutilă a vieții aflate la final. Astfel, este etică şi licită orice intervenţie medicală care favorizează dezvoltarea naturală și conservarea vieţii unei persoane umane (intervenţie „după natură”) – de exemplu transplantul de organe (discuția despre modul în care se face prelevarea organului este cu totul altceva!), corectarea unui handicap sau îngrijirea bolnavului. Totodată, nu este etic (este ilicit) orice comportament diferit de modalitățile pe care natura le indică pentru a urma o atare dezvoltare sau conservare – ca exemplu, fertilizarea in vitro sau prelungirea artificială a vieții aflate la finalul său natural. La fel de important este că întreruperea vieții prin acțiune directă sau inacțiune (a se vedea cazul Terri Schiavo din SUA) este, de asemenea, nepermisă; cum linia de demarcație între cele două este adesea dificil de estimat, ea face obiectul celor mai aprinse dispute în câmpul multidisciplinar al bioeticii.

În Japonia nu a existat până acum niciun fel de dezbatere publică pe această temă. Kanoko Matsuyama încearcă să schimbe lucrurile și scrie, pentru influenta publicație americană Bloomberg, povestea bunicii ei, din care selectăm:

My grandmother, Hisako Miyake, was one of 260,000 bedbound and elderly patients in Japan kept alive, often for years, with a surgically inserted feeding tube.

Obaachan, as I called her in Japanese, suffered from advanced dementia. She had been given liquid nutrients through a tube implanted in her stomach back in February 2013.

In late May of this year, her feeding tube was replaced with an intravenous drip to supply only salt and water and let nature take its course. She died peacefully in the evening of Sept. 5 at the age of 97, almost four months before her birthday.

I decided to write about her ordeal after consulting with my family because tube feeding at the end of life was a common medical practice yet rarely discussed in Japan. Living wills detailing medical care are also rare. Maybe my grandmother’s story could start a broader conversation about a difficult health-care issue, I thought.

When Life was Brief

Back in 1916, the year my grandmother was born, people generally did not face agonizing decisions about end of life care. The end came soon enough: The average life expectancy in Japan was 43 years back then, compared with about 83 now, the longest in the world.

She was born into the family of a wealthy rice wholesaler and lived comfortably as Japan industrialized and raced to catch up with western countries.

This life of privilege 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 and dissolved the assets. She lost her only brother Hiroshi, who was sent to Manchuria to fight.

She probably realized the ravages of aging by caring for and watching her own parents decline at home. When she was still mentally fit, she had said to my mom, “it would be so easy if she could hop to the afterlife instantly.” Yet as medical technology has advanced and life spans have lengthened, dying can be a very complicated and expensive process.

Japanese Boomers

My parents are Japanese baby boomers, a generation now heading toward retirement and pushing up the proportion of elderly in Japan. One in four is over 65 years old now and seniors will make up about 40 percent of the population in 2060.

They are expected to seek medical and nursing care increasingly in coming years. Japan, with a shrinking population and huge government debt load, has fewer salary-earning taxpayers to foot the bill for dependent seniors. The nation’s birth rate is low and the society doesn’t welcome immigrant workers for the most part.

Knowing what care baby boomers desire in the final stages of their lives may help reduce the cost to care for them. 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.

Until recently, Japanese doctors and patients, or their family members, have been reluctant to have candid discussions about the trade-offs between the prolonging life of the very elderly and sick and the costs to hospitals and society at large.

Touching a Chord

After I published a story about my grandmother’s dilemma on July 24 last year, I received hundreds of emails and letters from readers worldwide. Some wrote about struggles they’d experienced with their relatives. Others were anxious about their parent-care challenges ahead.

“I have never cried when reading a Bloomberg story,” wrote one reader. “I am going to make sure to talk with my grandmother about what she wants when she reaches that point.”

The story was also read by medical professionals. Kojiro Tokutake, a Japanese gastroenterologist, shared his story about his own internal conflict about the value of tube feeding. His experiences formed the basis of another story that I published.

Following news articles by Bloomberg News and other news organizations, Prime Minister Shinzo Abe’s government in April started cutting payouts from the national healthcare program on insertions of feeding tubes for new patients. The government also encouraged home care for patients nearing the end of their lives.

On a personal level, the whole experience allowed me to have a candid discussion with my own parents about their wishes for end of life care. I’m not sure I would have discussed it with them otherwise.

Whether my grandmother would have approved of her doctor’s decision to prolong her life with a feeding tube or not is impossible to know for sure.

She had such a strong desire to live. Even at the end of her life, she showed us her strength by fighting back high fevers several times.

I’m pretty sure she would have been displeased by my decision to share her decline with the rest of the world. She was sensitive about what people thought of her and her family. On the other hand, I have to believe she would have also been gratified that her story gave comfort to many families in pain and shaped a long overdue debate on medical care for the elderly in a rapidly aging Japan.