One of the important aspects of running an accredited training course is the responsibility inherent in making sure that our students are current with the latest research information regarding all aspects of pregnancy, birth and breastfeeding. These students will ultimately we working with expectant parents and those of us who lead this training course know that we are in effect presenting our own prenatal programs: our students are leading these groups espousing information and ideas they have gleaned from this Course as well as other sources.
At a recent in-service weekend for the faculty involved in our Graduate Diploma of Childbirth Education, we reviewed the information available to parents regarding the pregnancy tests offered as part of normal pregnancy care. Although the care offered by hospitals doctors and midwives often varies considerably, there are a number of tests that are regarded as routine. We looked at the evidence available and discussed the implications for informed choice by parents, ably assisted by Elaine Dietsch, a highly qualified midwife, Women’s Health Nurse, and Lecturer in one of our leading Midwifery programs. The information Elaine presented was very interesting.
Our first task was to participate in a role play of a typical prenatal visit where the doctor is explaining the outcomes of various prenatal tests to a couple who are expecting their first baby. Elaine explained that this role play was an exact transcription of an interview that she had taped as part of a research project, so had to be “real”. What an eye-opener! Those of us playing the parts quickly realised how difficult it would have been for parents to make any sense of what was being discussed and also how hard it would be to ultimately make a decision about whether to have the tests being offered or not.
Reviewing this information and participating in a role play like this makes you reassess the way we present the various issues surrounding prenatal test ans diagnosis in our classes. It emphases again the key role parenthood education programs play from the very start of pregnancy. Where else will parents find a knowledgeable person, not directly involved in their care and therefore (hopefully) unbiassed who will facilitate a discussion of the topic, the emotional and practical issues it raises whilst supporting and enabling informed choice to be made? I doubt that the midwife in the busy prenatal clinic will have time and I think it unlikely that the doctor who may be ordering the tests will take the time required to ensure s/he has obtained informed consent.
We must recognise the enormous dilemmas faced by parents and make sure they have access to the information they need at a time when they are facing the issues, that is, in early pregnancy. We must also recognise that we must protect our midwifery and medical colleagues from charges of withholding information by ensuring that parents are truly informed about the options they have. If the reality is that these busy colleagues don’t have enough time for individual counselling, it must be provided in another forum, and the early pregnancy program provides an ideal forum.
I firmly believe that every prenatal program should incorporate at least two sessions for parents who are 12 – 16 weeks pregnant. It is around this time in pregnancy that parents are confronted by a series of often major decisions that may well have a major impact on the physical and emotional health of themselves and their babies. There are often other concerns that would benefit from talking through, such as the enormous changes taking places in their lives, the practical aspects of producing the healthiest baby possible, the options and choices regarding health care for the pregnancy and birth. Indeed, the most influential decision they make will be the choice of caregiver and birth place: the evidence is very clear that it is these two factors, above every other consideration, that will determine the final outcome of the birth. An early pregnancy class provides an opportunity to explore these issues and perhaps learn about alternatives. The steps that can be taken to change the type of care, seek a second opinion and gain further information as a framework to underpin the final choice can also be offered.
It’s the prenatal tests, however, that often produce the greatest confusion. The explanation given by the midwife or doctor may have been completely unintelligible to the woman. She may have said she understood the discussion (rather than appear stupid), may have accepted the written information (without a hope of reading what it says) or may have felt flustered or overcome by the sudden announcement that testing is being offered (what is wrong with my baby that I have to have all these tests?). Many caregivers may believe that parents want and need to have as many tests as possible and encourage parents (“its for the good of your baby” or “it will set your mind at rest”). They may be unaware of the emotional trauma that may result and the possible deleterious effects a screening test may precipitate. Michel Odent has written about the “Nocebo” effect and its implications for maternal well being. Before parents are offered any screening or diagnostic tests as part of their pregnancy care, it is useful for them to have learned of and practise the most important questions that need to be asked:
- “What is the test you are offering me?”
- “What do you expect the test to reveal?”
- “How will the test be carried out?”
- “What are the advantages and disadvantages of this test?
- Specifically, are there any risks to the baby?”
- “How will the results alter your care or treatment of me?”
- “What will happen if I decline the test/procedure?”
Although some women do receive extensive counselling prior to genetic testing, many need follow up and a chance to talk through the issues in a more relaxed and informal setting. Again, an early pregnancy group can offer a chance to explore concerns with others in a similar situation. Sharing experiences and learning more about the implications of testing before it is done ensures parents have fully considered their options.
You may also need to provide support for those parents who choose not to test. It is unusual for parents to decline (avoid using that judgmental word “refuse”) ultrasounds or other offered tests but not rare and these parents often feel very isolated after taking this decision. Given that we know so little about the overall effects and even advisability of many of these prenatal tests, we must be prepared to support and recognise parent’s right to protect their baby through taking other avenues open to them. No-one can guarantee that the baby will be healthy or that any particular test is safe, therefore parents must have the right to choose and be supported in their decision. A group of peers, led by a competent educator with good facilitation skills might just counteract the prejudice and pressure often exerted on parents friends and family (and some unthinking health professionals!).
The way you tackle the presentation of these issues will be important. Small group discussion and a chance to examine various viewpoints will be essential. Centering the discussion on the specific tests being offered also avoids tedious exploration of issues that are not relevant.
I’m not going to detail the information you must provide – you can check out Elaine’s presentation on this site in the articles section. You will need to supplement this will the most recent evidence from a source such as the Cochrane Library. AIMS also has valuable insights into these thorny issues, both of a practical kind (summaries of the evidence) and also in feedback from women.
This is one topic that is not going to go away, especially with the headlong rush to screen, test, prod, poke, examine and assess in the hope that all this surveillance will reduce the anxiety experienced by mothers and the numbers of damaged babies being born. I certainly am glad I had a chance to talk through these issues with my colleagues at the study day – is this an area you need to bone up on too?
An edited version of this article first appeared in The Practising Midwife Vol 4 No 3, March 2001.