Ethical issues in pre-eclampsia : hurry up and wait

Thesis (MPhil)--Stellenbosch University, 2014.

ENGLISH ABSTRACT: Pre-eclampsia is a common and dangerous condition of pregnancy. During clinical care the sensitive obstetrician will frequently recognise moral ambiguity and ethical conflicts. It is important to understand the pertinent issues and find ways of resolving them. Counselling is an important element of modern medicine. In deciding which counselling model to apply, clinicians must consider many variables including the particular clinical scenario, strength of evidence, and the justifiable limits of paternalism and autonomy in a position of shared responsibility. Couples have a moral right to procreate even when the pursuit of pregnancy involves significant risks. However, with their understanding of care ethics as well as rights ethics, informed women are well placed to negotiate the extremes of these positions when deciding whether to risk a pregnancy or not. The concept of the “fetal patient” is a helpful one. An autonomous woman may choose to confer or deny this status to her previable fetus, while obstetricians must balance autonomy- and beneficence-based obligations to the pregnant woman with beneficence-based obligations to her fetus. Maternal behaviour that harms the fetus and future child is categorised as maternal-fetal conflict. However, any pregnant woman is morally required to avoid harming the fetus, if this can be done without sacrificing her own important interests. The term non-compliance implies a hierarchical nature in the doctor-patient relationship. This reduces patient agency, erodes trust and conflicts with informed choice. Although sometimes justified, this “label” generally does more harm than good. Expectant management of early pre-eclampsia recognises that neonatal intensive care is an expensive and limited resource. The ultimate goal of expectant management remains the safety of the mother and the delivery of a live infant who will not require intensive and prolonged neonatal care. This judicious use of neonatal intensive care improves distributive justice but by consenting to expectant management as an inpatient, the pregnant woman voluntarily restricts her freedom. The decision is morally undergirded by the value accorded to the viable fetus and the scientific evidence informing the decision. When an extremely preterm, growth restricted fetus requires delivery, resuscitation may become an issue for consideration. The distinction between withholding resuscitation in such cases, or initiating but later withdrawing care is morally irrelevant. Categories of optional and obligatory treatments are more helpful, but perinatologists must determine treatment thresholds through understanding the relevant data and ethics issues. Finally, women do not lose their rights when they become terminally ill. When an undelivered woman is declared brain dead following complications of pre-eclampsia, her doctors and family must formulate clear plans for her and her living fetus. She must still be treated with respect and her right to die with dignity not forgotten. Extension of somatic support to optimise the outcome of her fetus can be supported ethically provided that the fetus is at the threshold of viability, the support is not prolonged (distributive justice), advanced level support is available with a successful outcome likely, and that doctors and family are in clear agreement.

AFRIKAANSE OPSOMMING: Pre-eklampsie is ‘n algemene en gevaarlike toestand van swangerskap. Die verloskundige met ‘n fyn waarnemingsvermoë sal dikwels morele dubbelsinnigheid en etiese konflik tydens kliniese sorg erken. Dit is belangrik om die kernaspekte te verstaan en maniere te vind om dit op te los. Berading is ‘n belangrike komponent van moderne geneeskunde. Tydens besluitneming oor watter model van berading toegepas moet word, moet klinici ‘n aantal veranderlikes teen mekaar opweeg insluitend die spesifieke kliniese senario, sterkte van die getuienis, die geregverdigde perke van paternalisme en outonomie in ‘n posisie van gedeelde verantwoordelikheid. Die egpare het ‘n morele reg om voort te plant selfs wanneer die verlange na swangerskap betekenisvolle risiko’s inhou. Vrouens wat goed ingelig is, het die vermoë om die uiterstes van etiek van sorg en regte teen mekaar op te weeg wanneer hulle besluit om die risiko van swangerskap te loop. Die konsep van “fetus as pasiënt” kan wel tot verdere besluitneming bydra. Die outonome vrou mag self besluit of die fetus daardie status het. Aan die ander kant moet die verloskundige outonomie en goedwilligheid- (“beneficence”) gebasseerde verpligtinge teenoor die swanger vrou opweeg teen die goedwilligheid-gebasseerde verpligting teenoor haar fetus. Moederlike gedrag wat die fetus en toekomstige kind skend, word as ‘n moeder-fetus konflik beskou. Enige swanger vrou is egter moreel verplig om nie die fetus skade te berokken nie, mits dit gedoen kan word sonder die prysgawe van haar eie noodsaaklike belange. Die term “nie-inskiklikheid” (“non-compliance”) impliseer hiërargie in die dokter-pasiëntverhouding. Hierdie hiërargie doen afbreuk aan die besluitneming van die pasiënt, ondermyn vertroue en bots met ingeligte keuses. Alhoewel besluitneming op grond van hiërargies-gebaseerde gesag soms geregverdig is, veroorsaak hierdie kategorisering gewoonlik meer kwaad as goed. Afwagtende hantering van vroeë pre-eklampsie gaan van die standpunt uit dat neonatale intensiewe sorg ‘n duur en skaars hulpbron is. Die uiteindelike doel van afwagtende hantering bly die veiligheid en gesondheid van die ma en die verlossing van ‘n lewendige baba wat nie verlengde intensiewe- en neonatale sorg benodig nie. Hierdie oordeelkundige gebruik van neonatale sorg bevorder distributiewe geregtigheid, maar wanneer sy toestemming gee tot afwagtende behandeling as binnepasiënt, beperk die swanger vrou vrywilliglik haar vryheid. Hierdie besluit word moreel ondersteun deur die waarde wat aan die lewensvatbare fetus toegevoeg word en die wetenskaplike gronde waarop die besluit berus. Wanneer ‘n erge voortydse, groeivertraagde fetus verlossing benodig, word ressussitasie soms iets wat oorweeg moet word. Die onderskeid tussen die weerhouding van ressussitasie in sulke gevalle en die onttrekking van sorg waar dit aanvanklik begin is, is moreel irrelevant. Kategorieë van opsionele en verpligte behandelings is meer behulpsaam, maar perinatoloë moet die behandelingsdrempels bepaal deur die relevante data en etiek te verstaan. Laastens, vroue verloor nie hul regte wanneer hulle terminaal siek word nie. Wanneer die komplikasies van pre-eklampsie breindood van die vrou veroorsaak voor die verlossing van haar baba, moet haar dokters en familie duidelike planne vir die hantering van haar en haar fetus ontwikkel. Sy moet nogsteeds met respek behandel word en haar reg om met waardigheid te sterf, mag nie uit die oog verloor word nie. Verlenging van die ondersteuning van lewensfunksies om die uitkoms van haar fetus te verbeter, kan eties ondersteun word, mits die fetus na aan lewensvatbaarheid is, die ondersteuning nie te lank duur nie (distributiewe geregtigheid), gevorderde ondersteuning beskikbaar is met ‘n goeie kans vir suksesvolle uitkoms en dat die dokters en familie ten volle saamstem.