Liv­ing wills en­liven de­bate about death

A grow­ing num­ber of peo­ple be­lieve that qual­ity of life is more im­por­tant than longevity. Liu Zhi­hua re­ports.

China Daily (USA) - - CHINA - Con­tact the writer at li­uzhi­hua@ chi­nadaily.com.cn

At­ti­tudes to death are chang­ing in China. Once, the sub­ject was taboo — the num­ber four, si in Chi­nese, is still deemed un­lucky be­cause it sounds un­com­fort­ably like the word for death — and tra­di­tion­ally, peo­ple have been re­luc­tant to dis­cuss the end of life or chal­lenge treat­ment plans pre­sented by physi­cians or close rel­a­tives.

The sit­u­a­tion is now chang­ing, partly be­cause of greater con­tact with the out­side world and partly thanks to the ad­vent of “liv­ing wills”.

The wills of­fer peo­ple the op­por­tu­nity to spec­ify how they want to spend their fi­nal days, and pro­vide a guar­an­tee that their wishes will be acted upon in the event that ill­ness means they are un­able to com­mu­ni­cate, con­sent or dis­agree.

The wills are not legally bind­ing and the tes­ta­tor is al­lowed to with­drawthe doc­u­ment, but for the first time peo­ple are be­ing of­fered a chance to state the treat­ment and life-sup­port mea­sures they would be will­ing to ac­cept as death draws near, rang­ing from be­ing fed by a tube, to hav­ing in­va­sive ven­ti­la­tion, dial­y­sis and car­diopul­monary re­sus­ci­ta­tion.

Ac­cord­ing to the Beijing Liv­ing Will Pro­mo­tion As­so­ci­a­tion, the first or­ga­ni­za­tion on the mainland to pro­vide liv­ing wills on­line, more than 20,000 peo­ple have signed up via its web­site, which has been vis­ited by tens of thou­sands keen to learn more about the process.

Ac­cord­ing to Luo Dian­dian, who founded the as­so­ci­a­tion in 2013, the idea is catch­ing on out­side the cap­i­tal, and the as­so­ci­a­tion has been con­tacted by peo­ple in Guangzhou and Shen­zhen, Guang­dong prov­ince, and Xi’an, Shaanxi prov­ince, who are con­sid­er­ing es­tab­lish­ing sim­i­lar projects.

“About 10 years ago, no one talked about liv­ing wills in China. When I tried to con­vince peo­ple of the ne­ces­sity of mak­ing one, they im­me­di­ately thought I was talk­ing about eu­thana­sia (which is il­le­gal in China), and re­buffed any fur­ther at­tempts at con­ver­sa­tion,” the re­tired car­di­ol­o­gist said.

“Now, liv­ing wills and pal­lia­tive care are of­ten the topics of gov­ern­ment con­fer­ences and fo­rums and no mat­ter whether peo­ple see the ne­ces­sity for them or not, at least they­know about them.”

In 2013, when Beijing res­i­dent Cui Di (not her real name) heard about Luo’s web­site, she didn’t hes­i­tate to make a liv­ing will. The 60-some­thing re­tiree said her de­ci­sion had been in­flu­enced by her mother, who died from col­orec­tal can­cer.

Al­though Cui’s mother told the fam­ily about her ill­ness in Jan­uary, 2002, she re­fused to be hos­pi­tal­ized. A few weeks later, dur­ing Spring Fes­ti­val, she asked Cui to take her to the hos­pi­tal, where she re­jected all treat­ment ex­cept pain re­lief. later.

“Mother was very in­sight­ful. She knew that med­i­cal treat­ment could only de­lay her death at best, but she would have to live in pain. She was very brave and de­cided not to cling to such a painful life,” Cui said, adding that she and her hus­band, also a re­tiree, have de­cided to refuse life-pro­long­ing mea­sures if they con­tract a ter­mi­nal ill­ness.

For Shao Hua, a res­i­dent of Nan­chang in Jiangxi prov­ince, liv­ing wills make things eas­ier for fam­i­lies.

The 62-year-old cited the ex­am­ple of her hus­band, who had a stroke in­May. He is now re­cov­er­ing, de­spite com­pli­ca­tions, in­clud­ing loss of speech. How­ever, if his con­di­tion had been more acute, Shao would have strug­gled to de­cide whether to aban­don life-sup­port mea­sures, de­spite the fact that she and her hus­band had al­ready agreed that liv­ing in veg­e­ta­tive state would be worse than death.

“If he had been brain dead, I would have al­lowed him to die with dig­nity, rather than feed­ing him via a tube, but I could never be 100 per­cent sure that he would have agreed withmy de­ci­sion. If he had made a liv­ing will, I would have known his thoughts,” she said.

Shao has­now­made­herown liv­ing will, and will dis­cuss the mat­ter with her hus­band when his con­di­tion has im­proved fur­ther. She died two months

The re­sults of a sur­vey jointly con­ducted by the as­so­ci­a­tion and the news app Toutiao in Septem­ber showed that 85 per­cent of the 1,000 re­spon­dents be­lieved they were the best per­son to make im­por­tant de­ci­sions about their treat­ment. Mean­while, more than 90 per­cent said they would want a pain­less, dig­ni­fied death in the event of con­tract­ing a ter­mi­nal ill­ness, and about 83 per­cent said they would­make the same de­ci­sion on be­half of fam­ily mem­bers.

For ZhangXiaoxi, a civil ser­vant in Hangzhou, Zhe­jiang prov­ince, a peace­ful, pain­less, dig­ni­fied death would be the most de­sir­able exit from the world. The 50-year-old civil ser­vant, who said she has been con­tem­plat­ing death since the age of 30, made a liv­ing will ear­lier this year, af­ter hear­ing about the as­so­ci­a­tion in Beijing.

There is no com­pa­ra­ble or­ga­ni­za­tion in Hangzhou, but peo­ple in the city are be­com­ing in­creas­ingly open­minded about dis­cussing death and liv­ing wills, Zhang said.

She noted that a few years ago, a doc­tor in the city at­tracted na­tional at­ten­tion af­ter it emerged that he had al­lowed his fa­ther, who had ad­vanced can­cer, to live out the last months of his life qui­etly in the coun­try­side, in­stead of in­sist­ing on time-con­sum­ing, painful chemo­ther­apy in the hos­pi­tal.

In­stead of crit­i­ciz­ing the Luo Dian­dian,

About 10 years ago, no one talked about liv­ing wills in China.”

a re­tired car­di­ol­o­gist and founder of the Beijing Liv­ingWill Pro­mo­tion As­so­ci­a­tion

son, most peo­ple showed sym­pa­thy and un­der­stand­ing, even though his be­hav­ior would have been re­garded as un­fil­ial in days gone by, she said.

How­ever, the as­so­ci­a­tion’s Luo said there is still a long way to go be­fore the idea is widely ac­cepted.

She be­lieves that a key step would be for the health au­thor­i­ties to in­clude liv­ing wills in pa­tients’ of­fi­cial med­i­cal records, so their physi­cians will know ex­actly what treat­ment they would be will­ing to un­dergo as their life draws to a close.

SongYue­tao, as­sis­tant to the pres­i­dent of the Beijing Ge­ri­atric Hos­pi­tal, said peo­ple are in­creas­ingly aware that qual­ity of life is more im­por­tant than longevity.

In the past, it was dif­fi­cult to talk about death with dy­ing pa­tients, and the phrase “liv­ing wills” — which trans­lates as “re­quests be­fore death” in Chi­nese — was shunned be­cause it sounded omi­nous.

The hos­pi­tal’s own ver­sion of the liv­ing will — which al­lows tes­ta­tors to “re­ject in­va­sive res­cue and treat­ments”— has been wel­comed by pa­tients and their fam­i­lies.

“Chi­nese peo­ple of­ten say that it’s bet­ter to live in mis­ery than to die, but nowa­days peo­ple are more pre­pared to ques­tion those tra­di­tional ideas,” Song said. 1.

of the 1,000 re­spon­dents to a re­cent sur­vey said they wanted a pain­less, dig­ni­fied death if they con­tracted a ter­mi­nal ill­ness. The sur­vey was jointly con­ducted by the Beijing Liv­ing Will Pro­mo­tion As­so­ci­a­tion and the news app Toutiao. The Beijing Liv­ingWills Pro­mo­tion As­so­ci­a­tion ques­tion­naire fea­tures five main ques­tions — known as “the five wishes” — each of which is fol­lowed by a num­ber of op­tions to clar­ify de­tails and specifics.

The types of med­i­cal treat­ment the pa­tient will ac­cept or re­ject Op­tions in­clude: I don’t want to ex­pe­ri­ence pain; I want to be given enough med­i­ca­tion to re­lieve the pain, even if that means I will be drowsy or sleep more.

The types of life-sup­port treat­ment the pa­tient will ac­cept or re­ject Op­tions in­clude: No car­diopul­monary re­sus­ci­ta­tion; No ven­ti­la­tor.

2. 3. How the pa­tient would like to be treated by other peo­ple Op­tions in­clude: I would like to be ac­com­pa­nied as much as pos­si­ble, even if I amunable to hear, see, or sense phys­i­cal con­tact; I would like to have pho­tos of loved ones inmy room or nearmy bed.

What the pa­tient would like their fam­ily and friends to know Op­tions in­clude: I wantmy loved ones to know that I still care for them, even though sep­a­rated by death; I wantmy fu­neral to be as sim­ple as pos­si­ble.

The pa­tient’s nom­i­na­tion of a per­son to act as their health­care agent

4. 5.

TING TING / FOR CHINA DAILY

A pa­tient in the on­col­ogy and hema­tol­ogy depart­ment of the Beijing Haid­ian Hos­pi­tal makes pa­per lanterns in the com­pany of vol­un­teers from the Beijing Liv­ing Will Pro­mo­tion As­so­ci­a­tion.

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