In his book, 'The Process of Genetic Counselling', Angus Clarke writes that nondirectiveness aims:
"…not to lead clients to make particular decisions or choices (those preferred or recommended by the clinician, the health service or by society) but to help them to make the best decisions for themselves and their families as judged from their own perspectives."
But how desirable and feasible is nondirective counselling in practice?
Genetic counsellors face many dilemmas when trying to help people understand the nature and implications of genetic disorders, and whether they are at risk or have a clear diagnosis. There are further difficulties in helping people to decide on the best ways to use that knowledge. Genetic counsellors do, however, tend to have reasonable amounts of time, and to meet people who 'opt-in' – have asked or agreed to be referred to them – and are therefore partly prepared.
In contrast, antenatal practitioners have to provide a fast, mass, routine, 'opt-out' screening service for pregnant women. They have little time with each woman, and decisions may have to be made quickly during pregnancy. Some women are unaware that they are being screened, and become amazed and shocked if, say, even a small fetal anomaly is seen on the ultrasound scan. Besides strictly genetic conditions, antenatal care also covers other abnormalities, such as of fetal growth, the placenta and maternal ill health. General antenatal staff cannot have expert knowledge of all of these conditions and their effects.
Genetic counsellors often have the results of diagnostic DNA tests, whereas antenatal staff mainly provide screening and scanning services, which tend to offer much vaguer information: risk probabilities suggested by maternal hormone levels, or 'soft markers' of uncertain meaning seen on the scan.
Much genetic counselling concerns 'open' lifestyle choices, which can be changed later on; antenatal counselling, by contrast, usually involves a 'closed' or irrevocable decision: whether or not to terminate the pregnancy.
Practitioners who advise a woman what to do could undermine her autonomy, and prevent her from reaching the 'best decision' for herself and her family based on her own values. The key principle of 'nondirectiveness' requires practitioners to explain and discuss, without directing the final decision. However, remaining neutral in such discussions is not always easy. The decisions made may go against the practitioner's own opinions or beliefs, or clinical judgement about the 'best thing to do'.
During our interviews and ethical discussions, practitioners suggested a number of ways in which more directive approaches may be adopted during antenatal counselling. These included the potential to encourage perceived 'best practice', a desire to support women's decision making or to offer opinions when specifically asked, and subtle (conscious or unconscious) channelling of women down particular routes for the sake of expediency.
Practitioners' reasons for giving directive antenatal counselling
The following examples illustrate reasons given by practitioners for being directive during antenatal counselling.
In Britain, obstetricians and midwives are directive in many aspects of their work other than antenatal counselling, such as in the labour wards.
Here, non-directiveness can be potentially negligent. In many specialties, staff and patients expect best practice to combine giving information with giving advice based on expert knowledge, and clinical experience and judgement.
'Empathy and support'
Antenatal counselling involves troubling, highly risky and uncertain decisions, including whether to terminate the pregnancy. Many women feel extremely distressed and need support; some feel very isolated.
Antenatal practitioners often nurture close relationships with the women they care for during the months of pregnancy, and see this as an important and even integral part of their work. These practitioners can feel that the nondirective approach compromises or is incompatible with their concept of a caring practitioner-client relationship.
Many women specifically request, even demand, directive counselling, asking: "What would you do if you were me?" Even the question, "What does a 70 per cent risk mean?" can be a way of seeking the practitioner's own value-laden interpretation as a way of making sense of the figures.
'Avoiding circular debates'
An obstetrician described women who agonised over whether to risk having an amniocentesis to test for Down's syndrome. They greatly feared the one per cent chance of causing a miscarriage, and the subsequent potential option to terminate the pregnancy. He remarked:
"If you are really going round and round in circles and they are not getting anywhere, then I do actually say, 'Well, given your major dilemma with coping with termination of pregnancy, you will probably have to decide to go on with this pregnancy…I cannot coerce you into having a diagnostic procedure with the downside of losing a wanted normal baby if you are that ambivalent about it, I really can't.' I would rather be directive about continuing".
'Information is inevitably selective'
Practitioners recognised that, inevitably, in selecting the information they believed was appropriate for each individual woman, they were being partly directive. They knew that they could only give each person a small part of all the available information.
'Promoting normal pregnancy'
Much of the information concerns numerous potential problems for the pregnant woman and fetus that will never arise. Truly informed consent to scanning would mean explaining many of these before asking for consent to the scan. Yet this would counteract the midwives' aims to promote pregnancy as a 'normal' event. Again, limiting information to promote women's confidence in healthy pregnancy is partly directive.
Practitioners knew they influenced women, overtly or covertly, to follow particular screening pathways because of time limits, such as ten minutes per ultrasound scan session. It was therefore easier for them when women opted for the more 'normal' pattern of screening acceptance, and did not question or resist the routines. A few practitioners also described 'guiding' women down particular pathways, covertly. One midwife said:
"You can easily force, not force them [women] but you can easily channel them into the decision making process that you feel is correct…"
A directive structure
The huge investment of time and resources in antenatal screening gives powerful messages to pregnant women and society that screening is the 'best thing to do'. These messages are echoed in the mass media.
Reservations about mass screening, that would help couples to make their own informed decision by balancing pros and cons, are seldom heard. Some women refuse screening, and the practitioners discussed their own anxiety when women demur or refuse. Copious extra records are made in these cases, for fear that the woman might sue if later she has an impaired baby. Midwives sometimes reported that managers expressed concern if the screening take up rate fell. It is hard for practitioners to be non-directive when they feel firmly directed themselves to run under-resourced services efficiently, and when 'opt-out' refusals are seen as obstacles to this efficiency.
A continuum from choice to coercion
Many of the practitioners described how the boundary between choice and coercion is not clear cut. Instead, along a continuum, from nondirected choice to overt coercion, slippage can occur.
'Nondirective counselling' is now used as an all encompassing term. To see it as a continuum, however, might encourage recognition and debate about which, if any, aspects of directiveness are acceptable, and which are not.
Moreover, our research highlighted other important issues that are likely to impinge on nondirectiveness. For example, there is currently little time during initial antenatal screening discussions to discuss complex issues. This will become even more problematic as more conditions are screened for antenatally. The change from explaining certainties (the fetus has Down's syndrome) to explaining probabilities (there is a 60 per cent chance that the fetus has Down's syndrome) also presents extra challenges to practitioners and expectant couples.If antenatal practitioners and prospective parents are to have informed and nondirective discussions, they are likely to need more resources and time, and we need a better understanding of the complexity of these discussions.
This research was funded by a Wellcome Trust Biomedical Ethics grant. Clare Williams and Priscilla Alderson interviewed 70 health practitioners. Bobbie Farsides chaired discussion groups with them to explore their ethical dilemmas.
Farsides B, Williams C, Alderson P. Aiming towards "moral equilibrium": health care professionals' views on working within the morally contested field of antenatal screening. J Med Ethics. 2004 Oct;30(5):505-9. Abstract ; Full text
Image credit: Anthea Sieveking