We thank Dr Paintin for his interest in our article.[1, 2] Paintin's main concerns appear to relate to the views of Chervenak and McCullough in their accompanying commentary on the professional responsibility of obstetricians. Both responses appear to miss the central point that we argued: in counselling, language can corrupt both the inner logic of the clinician's decision-making process and the counselling of families facing difficult decisions.
Paintin is wrong in characterising our argument as only relevant in the event of fetal abnormality undiagnosed at birth or when a decision has been made to continue the pregnancy. Our argument concerns the need for clarity in the language used in counselling. This applies whether the woman decides to terminate or continue the pregnancy and, if continuing, on what terms and with what goals.
Although it is sometimes assumed that those who raise questions about the ‘lethal’ nature of severe congenital malformations do so because they wish to prevent termination, our reason for writing the article was to emphasise the importance of providing clear information and counselling. It was not to give an anti-choice message. Clear language is fundamental regardless of one's views about the status of the fetus, or about the right to termination of pregnancy.
Terms such as ‘futile’ or ‘lethal’ are value laden, and may serve either to obscure the availability of choices, which may be important to the particular family, or to impose the doctor's values on their choices. Clarity about what the future may hold for the fetus or infant is critical to such decisions, regardless of whether the decision is ultimately termination of pregnancy, livebirth with palliation or livebirth with aggressive care.
The imposition of the doctor's values on such decisions is deeply distressing to women with pregnancies complicated by serious malformation, and may significantly affect the decisions made.[4, 5] The comments and attitudes of carers are sometimes felt as devaluing either the child (or fetus) or the couples' grief at their death.
In this context, the comments of Chervenak and McCullough are of concern to us when they suggest that ‘a diagnosis of a lethal fetal anomaly (is) responsibly managed when obstetricians and neonatologists assert their professional responsibility to offer or recommend nonaggressive management’. This might imply that no other form of management should be offered. We do not agree that this is what professional responsibility requires.
We are of the view that the responsibility of carers is to provide clear, unbiased counselling, offering the full range of realistically available treatments. It follows inevitably from this that couples will on occasion make choices with which the doctor might disagree. This does not detract from the duty to facilitate those choices, whatever they may be.
Hard choices require clear information. Linguistic ambiguity and the loose use of value-laden terms such as ‘futile’ or ‘lethal’ do not serve this purpose.