Last days of com­fort

Pal­lia­tive care for ter­mi­nally ill chil­dren on rise in China

China Daily (USA) - - FRONT PAGE - Con­tact the writer at zhaoxu@chi­nadaily.com.cn

Lyn Gould spent just one day with Alexa, a 10-week-old girl who had been aban­doned by her par­ents af­ter an oper­a­tion, but she will not for­get the tod­dler, whodied late last year.

“Her tiny body was frag­ile and en­cum­bered with drains and post-op­er­a­tive wounds,” said Gould, co-founder of the But­ter­fly Chil­dren’s Hospices, an NGO that runs the But­ter­fly­Home in Chang­sha, Hu­nan province, in an email ex­change with China Daily. The hos­pice is the first in the coun­try de­voted solely to chil­dren with ter­mi­nal ill­nesses.

“For some of our new staff, Alexa was the smallest baby they had ever seen. At first, our car­ers— ayi as we call them in Chi­nese — were afraid their hands would bruise or break this tiny hum­ming­bird of a girl,” Gould said.

“Yet with quiet re­solve, our staff put their fears aside — to see Alexa’s ayi hold­ing her close and singing was in­cred­i­bly beau­ti­ful. Her time was close and she had ex­pe­ri­enced only hurt in her life so far. But for the brief time she was with us, she knew only love,” said the 67-year-old, who set up the But­ter­fly Home in 2010, af­ter work­ing as a pediatric nurse in the United King­dom for nearly 40 years.

Emo­tional sup­port

Fu Xiaoli, the home’s di­rec­tor, said love is at the heart of pal­lia­tive care, a term that is be­com­ing in­creas­ingly com­mon in the Chi­nese med­i­cal world. “Pal­lia­tive care is spe­cial­ized, all-around care for peo­ple with se­vere, of­ten ter­mi­nal, ill­nesses. Rather than pro­vid­ing ac­tive treat­ment aimed at a cure, pal­lia­tive care fo­cuses on the re­lief of symp­toms and of­fer­ing men­tal, emo­tional and so­cial sup­port for pa­tients and their fam­i­lies. Qual­ity of life and a com­fort­able and peace­ful end of life is what we have in mind,” she said.

To pro­vide a sick, aban­doned child with a sense of peace is a daunt­ing task, and the ab­sence of a lov­ing fam­ily is just one of many un­der­min­ing fac­tors.

Zhou Xuan, an on­col­o­gist at the Bei­jing Chil­dren’s Hos­pi­tal, clearly re­mem­bers see­ing a dy­ing boy press­ing his face against the win­dow be­side his bed. “He was about 2, and had acute myeloid leukemia. For most of the four months he stayed on the ward, he longed to go out­side and play, a re­quest re­peat­edly turned down by his mother who was wor­ried about his phys­i­cal con­di­tion,” she said.

“Weeks later, I came across the boy’s mother at the hos­pi­tal. She was trau­ma­tized by his death, and by the fact that she had re­fused his ‘one last wish’,” Zhou said. “Sadly, re­grets are com­mon among par­ents, who are fo­cused too sin­gle-mind­edly on seek­ing a cure for their dy­ing child.”

She said the suc­cess of chil­dren’s pal­lia­tive care in China will de­pend on whether par­ents can ac­cept that the process is not about “giv­ing up”, but about “mak­ing peace with one­self while hav­ing a dig­ni­fied, less-painful exit from life’s stage. In the West, this is done by spe­cially trained teams of doc­tors, nurses and so­cial work­ers who work to­gether with a pa­tient’s doc­tors to weave an ex­tra layer of sup­port for the pa­tients and their fam­i­lies. In China now, my team of doc­tors and nurses have to un­der­take dual roles.”

Strangely, this ar­range­ment may bet­ter suit the cur­rent sit­u­a­tion: Chi­nese par­ents are gen­er­ally skep­ti­cal about the no­tion of pal­lia­tive care, and con­se­quent­ly­may need ad­vice from peo­ple they trust, such as med­i­cal staffwhotreated their child.

“We ad­vo­cate an in­te­grated ap­proach, whereby pal­lia­tive care is of­fered to pa­tients at a rel­a­tively early stage, along with cu­ra­tive treat­ment,” Zhou said. “Later, as the ill­ness pro­gresses, we grad­u­ally raise the level of pal­lia­tive care while re­duc­ing the role of ac­tive treat­ment.”

In re­al­ity, break­throughs of­ten come at un­likely — some­times painful — mo­ments; for ex­am­ple when ac­tive in­ter­ven­tion has failed or wreaked con­sid­er­able dam­age on the child. “When par­ents feel vul­ner­a­ble, they tend to be more open to ideas that they might oth­er­wise im­me­di­ately dis­miss,” said Wang Xumei, a vet­eran pediatric nurse in Zhou’s de­part­ment. “Symp­tom con­trol and mak­ing ter­mi­nally ill pa­tients feel as com­fort­able as pos­si­ble is em­bod­ied in the def­i­ni­tion of pal­lia­tive care. A lot of trust and un­der­stand­ing is gained when we lift chil­dren out of phys­i­cal suf­fer­ing with mor­phinemed­i­ca­tion,” she said.

Sus­pi­cion and fear

Mor­phine is a sen­si­tive word in con­tem­po­rary Chi­nese cul­ture. It is strongly as­so­ci­ated with ad­dic­tion and there­fore arouses sus­pi­cion and fear.

“It’s no ex­ag­ger­a­tion to say that in past decades the prej­u­dice the Chi­nese med­i­cal world has long held against mor­phine has re­sulted in a tremen­dous amount of pain for pa­tients. That pain that could have been tamed by the well­guided ad­min­is­tra­tion of drugs,” Zhou said.

She be­lieves that chil­dren, es­pe­cially very young chil­dren, bear the brunt of this prej­u­dice. “De­spite a com­mon mis­con­cep­tion, chil­dren ac­tu­ally have a much higher tol­er­ance of phys­i­cal pain and com­plain much less than adults. That’s partly be­cause they are more eas­ily dis­tracted and there­fore less fo­cused on their suf­fer­ing.

“It’s not un­usual to see a child fall asleep af­ter cry­ing out in pain for some time,” she said. “This has led many to be­lieve that the child isn’t suf­fer­ing ‘that much’ or that the pain is rel­a­tively short-lived. In fact, nei­ther is true,” she said.

Ac­cord­ing to Zhou, be­fore the end of 2014, mor­phine was only avail­able via in­jec­tion at the Bei­jing Chil­dren’s Hos­pi­tal, one of the best of its kind in China. “At my in­sis­tence, in early 2014, our hos­pi­tal in­tro­duced mor­phine pills. That was a huge step for­ward since it al­lowed mor­phine to be used by out­pa­tients ath­omeas a pre­scrip­tion drug,” she said. “If you lis­ten to the World Health Or­ga­ni­za­tion, there’s no bet­ter place to have a peace­ful death than at home.”

Sun Yang, a vol­un­teer with Zhou’s team, has first­hand ex­pe­ri­ence of that: “I once drove a 13-year-old girl and her fam­ily to the rail­way sta­tion. The girl had ter­mi­nal blood can­cer, and had en­tered the count­down of her life. She had been very co­op­er­a­tive and very quiet dur­ing her stay at the hos­pi­tal. But on that home­com­ing day, I could see that ex­cite­ment had tinted her cheeks.”

But not ev­ery child has a home to re­turn to. That’s why Gould, who has been in­ter­ested in China since child­hood, opened the But­ter­fly Home, where the team tries to im­bue vi­tal­ity in chil­dren with “no life in their eyes” when they ar­rive “shocked and dev­as­tated” af­ter be­ing aban­doned.

This is de­spite the fact that the ma­jor­ity of the chil­dren will die, Fu, the di­rec­tor said. “Most of them have mul­ti­ple ill­nesses and com­pli­ca­tions with no med­i­cal so­lu­tions. Over the past six year­swe­have cared for more than 176 ba­bies and chil­dren — sadly, more than half of them had con­di­tions where they could not have a long life” she said. “Death doesn’t di­min­ish the mean­ing of what we do — it in­creases it.”

The car­ers’ daily rou­tine in­volves feed­ing, mas­sag­ing and a lot of hug­ging and playkiss­ing. The carer-to-child ra­tio is kept at 1-to-3 at all times to make sure that each child — there are cur­rently 15 in the home — en­joys enough love and at­ten­tion to de­velop the kind of emo­tional bond es­sen­tial to their well-be­ing. Mean­while, the hos­pice’s four trained pediatric nurses are al­ways ready to re­act to changes in a child’s con­di­tion. “No two days are the same at But­ter­fly,” Gould said.

Re­spect

Gould be­lieves the home’s suc­cess is un­der­pinned by an un­der­stand­ing and re­spect of lo­cal cul­ture, and a will­ing­ness to be pa­tient be­fore real change starts to take place. “At first, even our Chi­nese nan­nies who loved the chil­dren would refuse to be near a dy­ing child. But slowly, as they came to rec­og­nize the child as a real per­son and love them, they be­gan to want to be with them in their last hours, hold­ing them, singing to them and griev­ing for them when they had gone,” she said.

She is non­judg­men­tal when it comes to the is­sue of aban­don­ment: “I have seen so many chil­dren who were ob­vi­ously loved by their fam­i­lies and were aban­doned sim­ply be­cause the fam­ily could not get the care and sup­port needed to keep them, make them com­fort­able and cope with their deaths.”

Zhou, from the Bei­jing Chil­dren’s Hos­pi­tal, has ex­pe­ri­ence of the or­deals that dy­ing chil­dren and their fam­i­lies go through.

“A few years ago, af­ter the death of a 10-year-old girl at mid­night, her mother, de­spite her suf­fo­cat­ing grief, bowed deeply to ev­ery­one of us, thank­ing us for al­low­ing her to stay un­til the last minute,” she said. “Peo­ple are so afraid of be­ing ‘driven’ from hos­pi­tals be­cause no sup­port— med­i­cal or emo­tional — is avail­able once they are out­side.”

Since 2014, Zhou’s team has tried to fill the void by mak­ing fol­low-up phone calls to pa­tients, many of whom are ap­proach­ing death and have been “per­suaded” to leave hos­pi­tals be­cause ac­tive treat­ment is no longer mean­ing­ful.

“We try to lis­ten to them and of­fer ad­vice on pain con­trol — we give pa­tients mor­phine pills and ad­vice be­fore they leave the hos­pi­tal,” Zhou said. “The most-asked ques­tion is: Will my child die a hor­ri­ble death?”

In March last year, Zhou used money do­nated by the pub­lic and busi­nesses to rent a 100-square-me­ter space a few min­utes’ walk from the Chil­dren’sHospi­tal. There the chil­dren can read and play with vol­un­teers while their par­ents take a yoga class or a coun­sel­ing ses­sion with pro­fes­sional psy­chol­o­gists. “Chil­dren are lit­tle sponges ca­pa­ble of ab­sorb­ing any mood from those around them, in­clud­ing anx­i­ety and de­spair. If we are gen­uinely con­cerned about the chil­dren, we have to take care of their par­ents.”

Zhouhas helped to estab­lish the Chi­nese Chil­dren’s Pal­lia­tive Care Work Group, com­pris­ing like-minded med­i­cal pro­fes­sion­als from 31 pub­lic hos­pi­tals in China. “Apart from shar­ing ex­pe­ri­ences, I can also re­fer some of my ter­mi­nally ill pa­tients to hos­pi­tals within our work group lo­cated in smaller cities. They are not as crowded as ours and can of­fer a more re­laxed en­vi­ron­ment for pal­lia­tive care.”

A heavy toll

Last win­ter, the fa­ther of a 13-year-old who had been re­ceiv­ing treat­ment for four years in Zhou’s de­part­ment asked her to talk with the dy­ing boy. “He had a se­ri­ous re­lapse af­ter a stem cell transplant. Both the doc­tors and the par­ents knew it was the end,” she said. “But the boy was adamant about sur­viv­ing. In fact, his re­fusal to rec­on­cile with re­al­ity and his in­sis­tence on con­tin­u­ing treat­ment at all costs— fi­nan­cial, phys­i­cal and men­tal — rav­aged those who loved him.

“The boy was quite sen­si­tive – so sen­si­tive that he must have guessed­whyI had turned up in his lit­tle room. The first thing he said was: ‘ Noth­ing is worse than giv­ing up hope’. I didn’t blame him. I be­lieve that a pa­tient’s wishes should al­ways be re­spected, but I also re­al­ize that a lack of proper ed­u­ca­tion about death has ex­erted a heavy toll.”

KatieHill, head nurse at the But­ter­fly Home, found so­lace in the last hours she spent with So­phie, a 10-month-old girl who had “a large, ag­gres­sive can­cer that caused her face to swell”.

“One week­end, she spent her nights not in her crib, but snug­gled in bed with­mein the treat­ment room,” Hill said.

“On her fi­nal morn­ing, she woke early af­ter a com­fort­able night. We cud­dled in bed while wait­ing for the rest of the­house to stir. We lis­tened to mu­sic, and So­phie gazed steadily into my eyes. She was alert, calm and un­afraid,” said Hill, who has a bach­e­lor’s de­gree in Chil­dren’s and Gen­eral Nurs­ing. “Some­how So­phie un­der­stood that her suf­fer­ing was al­most over. That quiet morn­ing was a sa­cred good­bye be­fore she went.”

The girl died an hour later, butHill has no doubts that she’s “still shin­ing”. “Through­out So­phie’s short life, her light never grew dull in spite of ev­ery­thing she suf­fered,” she said. “We are blessed by that light.”

Sadly, re­grets are com­mon among par­ents, who are fo­cused too sin­gle­mind­edly on seek­ing a cure for their dy­ing child.”

LIANG LUWEN / FOR CHINA DAILY

LYN GOULD FOR CHINA DAILY

So­phie, a can­cer pa­tient who died last year, with a pediatric nurse at the But­ter­fly Home.

Zhou Xuan, an on­col­o­gist at the Bei­jing Chil­dren’s Hos­pi­tal

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