Informed choice and the concept of risk
In today's culture of blame, it seems there is a constant need to find someone responsible in the case of things going wrong. It is often easier to limit the choices offered to women to those midwives feel most comfortable with, but, as Jean Walker argues, surely this takes away any real chance the woman has of making a fully informed choice about the care she receives.
Midwives magazine: January 2005
Providing women with information in an attempt to help them make an informed choice leads to the presentation of a debate rather than a choice. Stapleton et al (2002) highlight some of the issues and question if choice exists. It is possible to adopt the medical concept of `only normal in retrospect' or the midwifery `normal unless proven otherwise'. The woman of course wants to know `what is best for me' and put this in the context of her life. In reality, the answer is that often we do not know.We can use the evidence we collect, and we can give each event a risk value, but for her it may be a more simple `either it will or it won't'.Maybe our approach should be to ask her what information she needs most?
The most important issue of accepting the concept of informed choice is the ability to accept that women may listen to all our advice and seek information from a wide range of sources, but may still make a choice we are not comfortable with. If we are not happy with her choice and are now going to set about changing her mind, why did we go through the motions of presenting a choice in the first place?
We use evidence-based guidelines to steer our practice and influence the information we give to women to make their choices, but there are huge areas of midwifery practice where research has not been carried out, so very little evidence exists. For example, we know that we need to do much more research about labour.We work within some long-accepted customs and practices, such as four-hourly vaginal examinations, timed rates of dilatation, limited lengths of second stages, and a very poor understanding of the real physiological labour. So when we present women with choices, do we influence the discussion with our own concept of risk without putting it into context?
All pregnant women, either knowingly or unknowingly, take risks with their life and that of their baby, but life is full of hazards. Discussing occupational hazards with a woman who was a professional skydiver brings a whole new dimension. This perspective on risk demonstrates how skewed our thinking can be.When we think of the horrific events we have seen or heard of during our career, there is no doubt that it will influence our thinking, but we also care for women with chronic conditions who have managed to normalise their lives.We have to be sure that when we present evidence to women, we do not lose sight of their choices and their responsibility for their life and that of their baby.
The whole of our care is geared towards reducing those risks, but have we taken a step into the `nanny state'? This may be in direct response to rising levels of litigation, but midwives' reactions to reduced antenatal schedules, selective postnatal visiting and home birth demonstrate some of our fear and anxiety, and fail to give women ownership. Our role should become much less ritualised and much more individualised. Our knowledge and experience should be telling us that every woman we care for has different needs, a different degree of knowledge, differing levels of health, and our key aim should be one of 'optimising health' for all mothers and babies.
Some midwives do this very well - they work alongside women, listen to their hopes and understand their fears, and manage to make every one of them feel special. This is why a deep understanding of how to make the most abnormal situation more normal, why understanding how women can be deeply traumatised by what appears to be an everyday event and why breastfeeding is such a fundamental and important skill, are all so vital.
There are times when our desire to give women the facts can be difficult, such as when offering women information to make their choice of screening tests for Down's syndrome, spinal defects and other development abnormalities. At a time when we should be celebrating the miracle of pregnancy with women, we begin by casting doubts, introducing worry and building concerns. Perhaps a different approach might alter the relationship we have with women.Would the answer be to promote preconception care in schools and colleges, so that knowledge about tests and screening could be discussed in a different arena, and offered as a list of options?
Women have reported feeling that the whole booking system is negative, raises fears and spoils their enjoyment of their pregnancy. All of us will have felt grief and concern in sympathy with women who receive abnormal results. This becomes even harder when the results represent false negatives. It is very important to keep a perspective on the limitations of such tests, the emotional impact they have on women and avoid any errors on our part, such as wrong dates or poor labelling of samples.
The first time women encounter screening is in the scan room.Many women believe the scan is for them to get a `first picture' of their baby, and they need to be fully informed about the real purpose and implications of scanning. A woman should not feel under pressure to change her mind should she choose not to have one, or be selective about what is reported back to her. She deserves to know that even with technology becoming evermore sophisticated, this 'window on the womb' has still not been proven to be absolutely safe.
The issue of anti-D prophylaxis brings to light another dilemma, that of giving informed choice about therapeutic doses? Until the bovine spongiform encephalitis (BSE) outbreak and the possibility of a human form developing, did we consider it? We now recommend treatment to a number of women who may not need it. It feels rather like the measles, mumps and rubella (MMR) vaccine debate all over again, because few women have been involved with the decision-making.
The way in which the use of technology, such as continuous fetal monitoring, has been embraced, while the continuous presence of a midwife has not, highlights how we have been seduced into a technological belief system where women's bodies are not trusted. Some women have an intuitive feeling for their baby's growth and wellbeing, while others need the reassurance of technology.Women lead complex lives and often the consideration of a procedure or risk is put into this context, such as the desire to recover quickly after a normal birth, as opposed to the choice of caesarean section (CS) for a busy professional who likes the control of an elective CS that can be slotted into their diary. This may be an underlying factor when women choose their place of birth, pain-relief and feeding method.
We now have a very high CS rate, and studies of vaginal birth after CS (VBAC) are an example of the difficulty professionals face when discussing choices with women.We know that some VBACs are safer than others. Attempts to quantify this into a scoring system have been made, but none have yet proven successful (Duff, 1998; Eden et al, 2004; Flamm et al, 1997).We know that some scars are more likely to rupture, but we do not know which ones.We know that those women who choose vaginal birth after CS have better outcomes than those women who choose a repeat CS, but if they then end up having a CS their outcome is likely to be worse (Flamm, 2001).
Confused? So how would you begin to explain to a woman, so that she can make a choice and give consent, without talking about the woman you saw who had a ruptured uterus and ended up needing a hysterectomy, bladder surgery and a blood transfusion for major haemorrhage (Gould et al, 1999; Guise, 2004).We have to understand that we are the X-factor that makes a difference to every woman's experience of our service. Our performance, knowledge, attitudes and behaviour all make a huge difference to the way women respond.
We have to accept that we live in a more litigious society, and every casualty we can prevent is essential, but how do we work with risk? We work in an environment where risk management provides us with policies and procedures, evidence-based guidelines, training and clinical governance. These mechanisms have achieved great advances in some areas and we must get involved to make changes, but have they engaged with women? The number of women involved remains a token, and they are often not representative of the local population or sufficiently confident to voice their opinions.We must be listening to women more, hearing their concerns and involving them in planning service configuration, developing policies and considering new procedures.
Duff P. (1988) Outcome of trial of labour in patients with a single previous low transverse caesarean section for dystocia. Obstetrics and Gynaecology 71: 380-4.
Eden K, Hashima J, Osterweil P, Nygren P, Guise JM. (2004) Childbirth preferences after caesarean birth: a review of the evidence. Birth 31(1): 49-60.
Flamm BL, Geiger AM. (1997) Vaginal birth after caesarean delivery: an admission scoring system Obstetrics and Gynaecology 90(6): 907-10.
Flamm BL. (2001) Vaginal birth after caesarean: reducing medical and legal costs. Clinical Obsterics and Gynaecology 44(3): 622-9.
Gould DA, Butler-Manuel AS, Turner MJ, Carter PG. (1999) Emergency obstetric hysterectomy ± an increasing incidence. Journal of Obstetrics and Gynaecology 19: 580-3.
Guise JM. (2004) Vaginal delivery after caesarean section. British Medical Journal 329: 359-69.
Stapleton H, Kirkham M, Thomas G. (2002) Qualitative study of evidence based leaflets in maternity care. British Medical Journal 324(7338): 639.