Mak­ing pal­lia­tive care child’s play

A unique health­care ef­fort in Ker­ala’s Alap­puzha dis­trict is do­ing won­ders by rop­ing in chil­dren

Governance Now - - HEALTHCARE - Sree­latha Menon feed­back@gov­er­nan­

Sneha sena is a unique at­tempt to in­te­grate ed­u­ca­tion and health­care by bring­ing school chil­dren into the field of pal­lia­tive care. in Ker­ala’s Alap­puzha dis­trict, a gov­ern­ment med­i­cal of­fi­cer has de­cided to cre­ate an army of stu­dent vol­un­teers to be part of the gov­ern­ment’s pain and pal­lia­tive care pro­gramme.

As part of the gov­ern­ment pol­icy, ev­ery pri­mary health cen­tre (PHC) is sup­posed to have teams of doc­tors and health work­ers who visit homes of bedrid­den or ter­mi­nally ill pa­tients who need home-based care. The doc­tors are from al­lo­pathic, ayurvedic and ho­moeo­pathic streams of medicine.

This is be­ing im­ple­mented all over the state and the pa­tients are al­lowed to choose be­tween al­lopa­thy and ayurveda treat­ment. in Alap­puzha, a med­i­cal of­fi­cer Dr Nisha NT has fur­ther given a boost to this ef­fort by rop­ing in stu­dents in the pro­gramme.

How it all start?

dr nisha was posted in Kan­dal­lur in Alap­puzha dis­trict. This was one of the two pan­chay­ats where ayurvedic pal­lia­tive care was in­tro­duced by the gov­ern­ment in 2017.

dr nisha de­cided to give a novel twist to the treat­ment. she wanted the pa­tients to feel that they were part of the fam­ily and not de­pen­dents, as most bedrid­den pa­tients feel.

so in 2017, on the day of onam, when the whole state was cel­e­brat­ing, dr nisha launched the pal­lia­tive care pro­gramme with medic­i­nal plants in her dis­pen­sary and of­fered Ona pu­dava or new clothes to the pa­tients of pal­lia­tive care. chil­dren from the fam­i­lies of pal­lia­tive care pa­tients were also in­volved in this ini­tia­tive. And it was like a big fam­ily gath­er­ing.

Af­ter a few months, one of the pal­lia­tive care pa­tients, Panka­ji­ak­shi­amma, fell and needed surgery. she was old and not hope­ful of sur­viv­ing. so she told her daugh­ter that when she dies she wants to be wrapped in the same clothes that we were given to her on onam.

Panka­ji­ak­shi­amma’s last wish touched dr nisha and she felt that her in­stinct was right. Pal­lia­tive care was more about feel­ing cared and feel­ing part of the fam­ily.

“i was touched by that in­ci­dent and de­cided that pal­lia­tive care hence­forth was go­ing to be about af­fec­tion and not just medicines,” she says.

soon an­other in­ci­dent hap­pened which made her re­think her strat­egy. There was a fam­ily of mother and son. The son was al­co­holic and in­ca­pable of do­ing any­thing, while his mother lay in filth, bedrid­den.

The mother was transferred to an old-age home. “But we still felt that some­thing was miss­ing,” she says.

in an­other case, there was a 45-yearold male pa­tient who was paral­ysed. His fin­gers needed to be mas­saged daily. But both his par­ents were old and asth­matic.

“Who would take care of him ev­ery day? We had just one sis­ter and one at­ten­dant,” dr nisha says.

“Then i thought that i needed an army of peo­ple from various fam­i­lies in the com­mu­nity to take care of pal­lia­tive care pa­tients. so i turned to the

schools around me. That was the be­gin­ning of sneha sena,” she adds.

A so­cial change was needed; just giv­ing medicines would not change any­thing. There was a need to change the ap­proach of fam­i­lies. “it is our re­spon­si­bil­ity to take care of our el­ders. And this has to be cul­ti­vated in chil­dren if we want them to grow up as re­spon­si­ble adults,” says dr nisha. The pa­tients need men­tal re­lax­ation, and even if they are bedrid­den they need re­lief from lone­li­ness, she adds.

There­fore, in­volv­ing school chil­dren seemed like a good idea. “Kids will talk or play with the pa­tients, lis­ten to their sto­ries, and so on. This was what i wanted,” says dr nisha.

But be­fore this, stu­dents were given train­ing in pri­mary health­care in their schools. A lec­ture on pal­lia­tive care was given to stu­dents and af­ter that about 30 stu­dents from the only higher sec­ondary school in Kan­dal­lur came for­ward to vol­un­teer as mem­bers of sneha sena.

in­ter­est­ingly, a draw­ing ac­tiv­ity was held for the chil­dren and they were asked to draw what they thought of pal­lia­tive care. “The ideas they drew were very mov­ing and made me look at things with new eyes,” she says.

Fi­nally be­fore the aca­demic year came to an end this year, dr nisha set off for her first trip with the kids. Two of them were go­ing for their first-ever trip to a pa­tient’s home. They were able to visit two homes and it was more like a demon­stra­tion trip for the stu­dents. usu­ally dr nisha and her two as­sis­tants cover 10 homes of bedrid­den pa­tients daily.

dr nisha as well as the stu­dents are ex­cited about their ac­tiv­i­ties af­ter the school re­opens in June. “We have divided ac­tiv­i­ties for the team into iden­ti­fy­ing pa­tients in their neigh­bour­hood and go­ing and talk­ing to them,” she says.

The stu­dents would usu­ally visit the pa­tients on hol­i­days or satur­days. in some cases they would visit ev­ery day. There are some pa­tients who are para­plegic and have no­body to give them medicines on time. Their fam­ily/ rel­a­tives go out in morn­ing for work, lock­ing them in­side the house. “in such cases, we would usu­ally go from the kitchen door to give them medicine,” says dr nisha.

“But now we can de­pend on boys liv­ing in the neigh­bour­hood to go and give them medicine once a day,” she adds.

dr nisha’s idea to rope in chil­dren is al­ready a hit in the state. There have been en­quiries from Kan­nur and Er­naku­lam dis­tricts to repli­cate the idea.

dr sheela Kar­lam who is the dis­trict med­i­cal of­fi­cer of neigh­bour­ing Thris­sur is all praise for dr nisha’s en­ergy and the unique­ness of her con­cept.

dr Kar­lam has em­braced the pal­lia­tive care scheme sne­had­hara as one of her pet pro­jects in the dis­trict. she says that dr nisha has given a new di­rec­tion to her. “it is a pos­si­bil­ity one must ex­plore. She has def­i­nitely taken a bold ini­tia­tive. We can’t deny that ex­pe­ri­ence is the best ed­u­ca­tion. And here the chil­dren would learn to look af­ter their own aged rel­a­tives in a more em­pa­thetic way.” says dr Kar­lam.

“It is our re­spon­si­bil­ity to take care of our el­ders. And this has to be cul­ti­vated in chil­dren if we want them to grow up as re­spon­si­ble adults.” Dr Nisha Med­i­cal of­fi­cer

Stu­dent vol­un­teers for pal­lia­tive care take oath be­fore they join the lo­cal dis­pen­sary on home vis­its of bed rid­den pa­tients

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