Medical futility as an action guide in neonatal end-of-life decisions

Sidler, Daniel (2004-03)

Thesis (MPhil)--University of Stellenbosch, 2004.

Thesis

ENGLISH ABSTRACT: This thesis discusses the value of medical futility as an action guide for neonatal endof- life decisions. The concept is contextualized within the narrative of medical progress, the uncertainty of medical prognostication and the difficulty of just resource allocation, within the unique African situation where children are worse off today than they were at the beginning of the last century. parties actively engage in an interactive deliberation for a plan of action. Both parties ought to accept moral responsibility. Such a model of deliberation has the added advantage of transcending the limitations of the participants to arrive at a higher-level solution, which is considered more than just a consensus. It has been argued that medical progress has obscured the basic need for human compassion for the dying and for their loved ones. The literature furthermore reports that the quality of end-of-life care is unsatisfactory for both patients and their families. It is within this context that the concept of medical futility is positioned as a useful action guide. As we do not have the luxury of withdrawing from the responsibility to engage in the deliberation of end-of-life decisions, such responsibility demands an increasing awareness of ethical dilemmas and a model of medical training where communication, conflict-resolution, inclusive history taking, with assessment of patient values and preferences, is focussed on. The capacity for empathetic care has to be emphasized as an integral part of such approach. Finally, in this thesis, the concept of medical futility is tested and applied to clinical case scenarios. It is argued that the traditional medical paradigm, with its justification of an 'all out war' against disease and death, in order to achieve utopia for all, is outdated. Death in the neonatal intensive care unit is increasingly attributed to end-of-life decisions. Futile treatment could be considered a waste of scarce resources, contradicting the principle of nonmaleficence and justice, particularly in an African context. The ongoing confidence in, and uncritical submission to the technological progress in medicine is understood as a defence and coping mechanism against the backdrop of the experience of life's fragility, suffering and the inevitability of death. Such uncritical acceptance of the technological imperative could lead to a harmful fallacy that cure is effected by prolonging life at all cost. What actually occurs, instead, is the prolongation of the dying process, increasing suffering for all parties involved. The historical development of the concept of medical futility is discussed, highlighting its applicability to the paradigmatic scenario of cardio-pulmonary resuscitation. Particular attention is given to ways in which the concept could endanger patient-autonomy by allowing physicians to make unilateral, paternalistic decisions. It is argued that the informative model of the patient-physician relationship, where the physician's role is to disclose information in order for the patient to indicate her preferences, ought to be replaced by a more adequate deliberative model, where both

AFRIKAANSE OPSOMMING: Hierdie tesis bespreek die waarde van mediese futiliteit as 'n maatstaf vir aksie in gevalle van neonatale 'einde-van-lewe' besluite. Die konsep word gekontekstualiseer binne die wêreldbeskouing van mediese vooruitgang, die onsekerheid van mediese prognostikering en die probleme wat geassosieer IS met regverdige hulpbrontoekenning; spesifiek binne die unieke Afrika-situasie. Dit word aangevoer dat die tradisionele mediese paradigma, met regverdiging vir voorkoming van siekte en dood ten alle koste, verouderd is. Sterftes in neonatale intensiewe sorgeenhede word toenemend toegeskryf aan 'einde-van-lewe' besluite Futiele behandeling sou dus beskou kon word as 'n vermorsing van skaars hulpbronne, wat teenstrydig sou wees met die beginsels nie-skadelikheid ('nonmaleficence') en regverdigheid. Die volgehoue vertroue in en onkritiese aanvaarding van aansprake op tegnologiese vooruitgang lil geneeskunde, kan beskou word as verdediging- en hanteringsmeganisme in die belewenis van lewenskwesbaarheid, lyding en die onafwendbaarheid van die dood. Sodanige onkritiese aanvaarding van die tegnologiese imperatief kan tot 'n onverantwoordbare denkfout, naamlik dat genesing plaasvind deur verlenging van lewe ten alle koste, lei. Wat hierteenoor eerder mag plaasvind, is 'n verlenging die sterwensproses en, gepaard daarmee, toenemende lyding van all betrokke partye. Die historiese ontwikkeling van die konsep van mediese futiliteit word bespreek met klem op die toepaslikheid daarvan op die paradigmatiese situasie van kardiopulmonêre resussitasie. Spesifieke aandag word gegee aan maniere waarop die konsep pasiënte se outonomie in gevaar stel, deur die betrokke medici die reg te gee tot eensydige, paternalistiese besluitneming. Die argument is dan dat die informatiewe model, waar die verhouding tussen die dokter en pasiënt gebasseer is op die beginsel dat die dokter inligting moet verskaf aan die pasiënt sodat die pasiënt 'n ingeligte besluit kan neem, vervang moet word met 'n meer toepaslike beraadslagende model, waar sowel die dokter as die pasiënt aktief deelneem aan interaktiewe beraadslaging oor 'n aksieplan. Albei partye word dan moreel verantwoordbaar. So 'n model van beraadslaging het die bykomende voordeel dat dit die beperkings van die deelnemers kan transendeer. Sodoende word 'n hoër-vlak oplossing - iets meer as 'n blote consensus - te weeg gebring. Die argument word ontwikkel dat mediese vooruitgang meelewing met die sterwendes en hul geliefdes mag verberg. Verder dui die literatuur daarop dat die kwaliteit van einde-van-lewe-sorg vir sowel die pasiënte as hul familie onaanvaarbaar is. Dit is binne hierdie konteks dat die konsep van mediese futiliteit kan dien as 'n maatstaf vir aksie. Medici kan nie verantwoordelikheid vir deelname aan beraadslaging rondom eindevan- lewe beluitneming vermy nie, en as sodanig vereis die situasie toenemende bewustheid van sowel die etiese dilemmas as 'n mediese opleidingsmodel waann kommunikasie, konflikhantering, omvattende geskiedenis-neming, met insluiting van die pasient se waardes en voorkeure, beklemtoon word. Die kapasiteit vir empatiese sorg moet weer eens beklemtoon word as 'n integrale deel van hierdie benadering. Ten slotte, hierdie tesis poog om die konsep van mediese futiliteit te toets en toe te pas op kliniese situasies.

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