Child-patient autonomy: interplay between normativity and relationality
Date
2024-04-22
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Abstract
Õigus autonoomiale ehk enesemääramisõigus on üks inimõiguste tuumpõhimõtetest. Patsiendi enesemääramisõigus väljendub õiguses anda meditsiiniprotseduuriks või raviks teavitatud nõusolek. See õigus on vahetult seotud meditsiinieetikast pärit patsiendi autonoomia põhimõttega. Kui täiskasvanutena peame iseenesestmõistetavaks, et arsti vastuvõtul on meil õigus küsimusi küsida, oma arvamust avaldada ning lõpuks langetada otsus, siis laste puhul on levinum arusaam, et nad ei ole pädevad oma tervist puudutavates küsimustes kaasa rääkima. Uuringuandmete kohaselt tunnevad lapsed tervishoiuasustustes tihti, et neid ei kuulata ning nad ei saa piisavalt kaasa rääkida. Oma doktoritöös uurin, kuidas rahvusvahelised ja riigisisesed normid reguleerivad lapspatsiendi autonoomiaga seonduvat, kuidas arstid suhtuvad lapspatsiendi autonoomiasse, kuidas nad kaasavad lapsi aruteludesse ja otsustamisse ning kuidas lahendavad laste ja vanemate vahelisi erimeelsusi. Samuti analüüsin, kuidas lapspatsiendi autonoomia igapäevases meditsiinipraktikas toimib, pidades silmas seda, et last esindab tervishoiuasutuses tavaliselt lapsevanem.
Doktoritöö tulemused näitavad, et lapspatsiendi autonoomia on suhetekeskne. Lapse, lapsevanema ja arsti vahel tekib eriline kolmiksuhe, mille käigus iga suhteosalise käitumine mõjutab teisi osalisi ja nende käitumist. See omakorda tähendab, et lapse õigus ja võimalus oma tervise küsimustes kaasa rääkida sõltub suurel määral täiskasvanute ja ka lapse enda sotsiaalsetest oskustest. Määrava mõjuga on seejuures lapsevanema käitumine. Lapsevanemad juhendavad sageli oma lapsi arstiga suhtlemisel. Mõned neist julgustavad oma lapsi rohkem arstiga suhtlema, teised aga, vastupidi, piiravad lapse autonoomiat, kas teadliku või alateadliku käitumisega, näiteks rääkides peamiselt ise või vastates ise lapsele esitatud küsimustele. Lisaks sotsiaalsetele aspektidele mõjutab lapspatsiendi autonoomiat ka tervishoiuasutuses loodud füüsiline keskkond. Ruumi kujundus, mööbli paigutus, istekohtade asetus, tööpõhimõtted – kõik sedalaadi tingimused võivad lapse arutelus ja otsustamises osalemist kas toetada või vastupidi, maha suruda.
The right to autonomy is one of the most fundamental human rights. In healthcare, patient autonomy is respected by honouring their right to consent. It is an established principle of human rights law and medical ethics that an informed consent must be obtained from a patient before any medical procedure. As adult patients, we assume that we can ask questions form healthcare professionals, discuss our options with them and finally make decisions for ourselves. With child-patients, however, this is often not the case. Research demonstrates that child-patients feel frequently that they are not heard or that their opinion does not matter enough. In this thesis, I explore how international treaties and Estonian law regulate child-patient autonomy, how do medical doctors perceive child-patient autonomy, how do they involve children in discussions and decision-making, and how do they resolve child-parent disagreement. I also analyse how child-patient autonomy functions in everyday medical practice, considering that the child is usually represented by the parent. The findings of my thesis demonstrate that child-patient autonomy is a relational phenomenon. The child, the parent and the healthcare professional generate a unique triadic relation wherein they produce particular effects on each other and each other’s behaviour through their relational connections. This makes the child’s right and opportunity to be involved in discussions and decision-making dependent on adults’ social skills, as well as the child’s own. The findings of the thesis suggest, however, that parents’ behaviour is of crucial importance in the exercise of child-patient autonomy. The parents often guided their children on how to communicate with the doctor, with some encouraging their child's active involvement in discussions, while others hindered it by doing most of the talking themselves and replying to questions addressed to their children. In addition to the above social aspects, child-patient autonomy is dependent on physical environment in healthcare institutions – the room design and allocation of furniture and seating arrangements may either support or oppress the child’s autonomy and opportunity to be involved in healthcare discussions and decision-making.
The right to autonomy is one of the most fundamental human rights. In healthcare, patient autonomy is respected by honouring their right to consent. It is an established principle of human rights law and medical ethics that an informed consent must be obtained from a patient before any medical procedure. As adult patients, we assume that we can ask questions form healthcare professionals, discuss our options with them and finally make decisions for ourselves. With child-patients, however, this is often not the case. Research demonstrates that child-patients feel frequently that they are not heard or that their opinion does not matter enough. In this thesis, I explore how international treaties and Estonian law regulate child-patient autonomy, how do medical doctors perceive child-patient autonomy, how do they involve children in discussions and decision-making, and how do they resolve child-parent disagreement. I also analyse how child-patient autonomy functions in everyday medical practice, considering that the child is usually represented by the parent. The findings of my thesis demonstrate that child-patient autonomy is a relational phenomenon. The child, the parent and the healthcare professional generate a unique triadic relation wherein they produce particular effects on each other and each other’s behaviour through their relational connections. This makes the child’s right and opportunity to be involved in discussions and decision-making dependent on adults’ social skills, as well as the child’s own. The findings of the thesis suggest, however, that parents’ behaviour is of crucial importance in the exercise of child-patient autonomy. The parents often guided their children on how to communicate with the doctor, with some encouraging their child's active involvement in discussions, while others hindered it by doing most of the talking themselves and replying to questions addressed to their children. In addition to the above social aspects, child-patient autonomy is dependent on physical environment in healthcare institutions – the room design and allocation of furniture and seating arrangements may either support or oppress the child’s autonomy and opportunity to be involved in healthcare discussions and decision-making.
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