The Right to Choose Dig­ni­fied Death at the End of Life: A Wel­come Par­a­digm Shift in In­dia

FICCI Business Digest - - Features -

Ad­vances in medicine, tech­no­log­i­cal in­ter­ven­tions and re­fine­ments of care pro­to­cols along with in­creas­ing life ex­pectancy have re­sulted in con­sid­er­able dilem­mas for both physi­cians and the pub­lic. An in­creas­ing num­ber of pa­tients who are of ad­vanced age or of in­cur­able ill­ness of­ten ex­pect, and are of­fered, ag­gres­sive life-sav­ing pro­ce­dures. The physi­cian is, some­what un­re­al­is­ti­cally, ex­pected to save lives un­der all cir­cum­stances. How­ever, lit­tle at­ten­tion is paid to the qual­ity of life as a con­se­quence of suc­cess­ful re­sus­ci­ta­tive at­tempts that only serve to post­pone death or to pro­long life in a vir­tu­ally veg­e­ta­tive con­di­tion. The sub­ject of med­i­cal fu­til­ity and its ad­verse im­pact to the in­di­vid­ual and the so­ci­ety is not openly ex­plored in med­i­cal train­ing or in pub­lic dis­course. A thought­ful hold­ing back of ag­gres­sive in­ter­ven­tions in the face of med­i­cal fu­til­ity is ex­pected to cut short the dy­ing process but would save the pa­tient much im­posed suf­fer­ing. Also, there is lit­tle fo­cus on the loss of dig­nity of the pa­tient and the im­mense emo­tional trauma and fi­nan­cial bur­den to the fam­ily when dis­pro­por­tion­ate ef­forts to save a pa­tient are made. There is al­ways a lurk­ing doubt in the minds of care­givers and fam­ily that they may not be do­ing enough to save the pa­tient. And bal­anc­ing this with the gen­uine in­ten­tion of not putting the

pa­tient in more pain, weighs heav­ily on them.

The judg­ment of harm ex­ceed­ing ben­e­fit of a med­i­cal in­ter­ven­tion and timely shift to a more holis­tic care fo­cus­ing on com­fort and pal­li­a­tion has to be made by the bed­side, and this needs train­ing and ex­per­tise. In such cir­cum­stances, the pro­fes­sional con­sen­sus is to pri­or­i­tize Pa­tient Au­ton­omy i.e., to take into ac­count the wishes and val­ues of the pa­tient, ex­pressed ei­ther di­rectly or through his/her fam­ily. This must al­ways be cou­pled with the physi­cian's obli­ga­tion to act in pa­tient's best in­ter­est, with­out do­ing harm to the pa­tient as a whole per­son. A shared de­ci­sion-mak­ing model be­tween the pa­tient or fam­ily and the care­givers is ideal in to­day's world.

The cen­tral­ity of pa­tient Au­ton­omy is clear as per the manda­tory need of con­sent and the re­cent Supreme Court ver­dict val­i­dat­ing Ad­vance Will to record one's wishes re­gard­ing treat­ment, which is ef­fec­tive when one be­comes in­com­pe­tent to con­vey them di­rectly. The judg­ment Com­mon Cause Vs The Union of In­dia of March 2018 thus pro­vides clar­ity on with­draw­ing and with­hold­ing fu­tile treat­ments based on pa­tient au­ton­omy that would hugely re­duce ag­gres­sive in­ter­ven­tions and the phys­i­cal, emo­tional and fi­nan­cial bur­dens that go with them. This would also have ben­e­fi­cial im­pact on care­givers' moral bur­den, po­ten­tially free­ing up med­i­cal man­power and re­sources for sal­vage­able pa­tients es­pe­cially in our heav­ily re­source-con­strained en­vi­ron­ment.

The Liv­ing Will is thus a legally valid in­stru­ment that can be ex­e­cuted by any­one and can be re­voked or mod­i­fied. Its im­ple­men­ta­tion is through a med­i­cal process with safe­guards as per bench­marked clin­i­cal path­ways. The ac­tual con­tours of the le­gal frame­work are be­ing worked out by the Min­istry of Health and Fam­ily Wel­fare, Gov­ern­ment of In­dia.

With­drawal and with­hold­ing de­ci­sions are com­mon all over the world. They are not re­garded as ac­cel­er­at­ing death as it is merely an act of 'non-in­ter­fer­ence' with a dis­ease that is driv­ing the death process. They should not be con­fused with ac­tive eu­thana­sia or physi­cian- as­sisted sui­cides- the ac­cel­er­a­tion of death through an in­ter­ven­tion of a lethal in­jec­tion, which are not le­gal in In­dia, although in­creas­ingly al­lowed in sev­eral parts of Europe and North Amer­ica.

The right to life is­sues re­late to ac­tive short­en­ing of life as op­posed to avoid­ance of fu­tile med­i­cal in­ter­ven­tions. On the is­sue of the right to death, the Supreme Court has clar­i­fied that the right to life en­shrined in the Con­sti­tu­tion in­cludes the right to a dig­ni­fied death. *Dr Narot­tam Puri, Ad­vi­sor-FICCI Health Ser­vices; Board Mem­ber & Former Chair­manNABH and Ad­vi­sor-Med­i­cal Op­er­a­tions & Chair­man-For­tis Med­i­cal Coun­cil, For­tis Health­care and Dr RK Mani, Chair-FICCI Task Force on Liv­ing Will & CEO and Chair­man-Crit­i­cal Care, Pul­monology & Sleep Medicine, Nay­ati Health­care.

An hon­est dis­cus­sion on the ef­fi­cacy of pro­posed treat­ments should be done and the pa­tient's choices and re­fusal of ag­gres­sive in­ter­ven­tions should be re­spected. Eco­nomic im­pact of ex­pen­sive med­i­cal in­ter­ven­tions is of cat­a­strophic pro­por­tions – driv­ing up to 50 per cent of fam­i­lies of pa­tients in ICUs to debt or even bank­ruptcy.

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