Stillbirth Research and Education : 10/08/2018 : Future of stillbirth research and education in Australia (2024)

DEKKER, Professor Gustaaf, Research Leader, Placental Development, Robinson Research Institute; Clinical Director of Women and Children's Division, Northern Adelaide Health Services; Professor in Obstetrics and Gynaecology, University of Adelaide

MIDDLETON, Associate Professor Philippa, Principal Research Fellow, South Australian Health and Medical Research Institute

ROBERTS, Professor Claire, Deputy Director, Robinson Research Institute, University of Adelaide

Evidence from Professor Middleton was taken via teleconference—

[11:48]

CHAIR: Welcome. Thank you for talking to our inquiry today. Information about parliamentary privilege has been provided to you all and is available from the secretariat. The committee has received your submissions as submission 19 and submission 158 respectively. Do any of you wish to make any corrections to your submissions?

Prof. Middleton : No.

Prof. Roberts : No.

Prof. Dekker : No.

CHAIR: Is there anything you would like to add to the capacity in which you appear?

Prof. Dekker : I'm also the chair of the South Australian perinatal mortality committee.

CHAIR: Professor Middleton, I invite you to make a brief opening statement.

Prof. Middleton : I'm a senior researcher with SAHMRI Healthy Mothers, Babies and Children, and I'm an executive member of the Centre of Research Excellence in Stillbirth. I'm working with many other people to try to prevent stillbirth and improve care for families who've experienced stillbirth. Seventy years ago, my own brother was stillborn due to what we now know to be entirely preventable causes. There's still so much to be done in preventing and addressing stillbirth. I'm actually talking to you from Brisbane, where we've just had a very successful stillbirth CRE meeting, which Claire attended. We had over 100 people there. Importantly, the day before, on Wednesday, we had a group of five Aboriginal and Torres Strait Islander women and five non-Aboriginal women discussing how best to address stillbirth experienced by Indigenous families and how we could work together to make healthier pregnancies a reality. I'd be very happy to elaborate on this or any other areas of disparity in stillbirth and their consequences at this hearing.

CHAIR: Thank you. I now go to our panel here and invite you to make an opening statement.

Prof. Roberts : I'm going to speak on behalf of Professor Dekker and myself. First of all, we thank all the brave women and men who have contributed submissions to this inquiry. We also have our own personal experience with pregnancy loss. My first baby died 35 years ago as a neonate after a very normal pregnancy. Gustaaf is a high-risk pregnancy obstetrician at the Lyell McEwin Hospital, so he cares for women who have pregnancy loss, including stillbirth and perinatal death.

We start with the contention that health in pregnancy for the mother and her fetus is actually the foundation of lifelong health for the mother and child, and therefore pregnancy health underpins the health of the nation. We have three points we would like to highlight about stillbirth. First: we consider that stillbirth should be considered in the continuum of pregnancy complications, since known pregnancy complications place the fetus at risk. If they were addressed early, we could prevent many stillbirths. We need research to better understand the pathogenesis of pregnancy complications, which are risk factors for stillbirth. These include fetal growth restriction, preterm birth, pre-eclampsia and gestational diabetes. There are also known maternal factors, including maternal obesity, smoking and extremes of age. Placental dysfunction is at the centre of a significant proportion of these. Documenting the near misses, understanding the causes and determining what interventions saved these babies who were near misses would be extremely helpful in preventing future stillbirth. We consider identifying women at risk as paramount. Our own research, which we could talk about in more detail later, is identifying women at risk of these major pregnancy complications.

Second: I table a paper, Long-term Trends in singleton preterm birth in South Australia, and point you to, on the back page, a graph that shows stillbirth rates for singleton pregnancies in South Australia over 28 years. You can see that the stillbirth rate has actually gone down in South Australia, for singletons at least. Together, our data show that preterm birth has actually risen in South Australia. It is also known in other parts of the country. Preterm birth has actually risen by 40 per cent, from 5.1 per cent to 7.1 per cent of pregnancies, largely due to increasing iatrogenic delivery—that is, doctor-induced delivery. Over that same period, our ability to detect congenital anomalies and diagnose and treat pregnancy complications, including fetal growth restriction, has improved, but this still requires much more attention. Although we cannot infer cause and effect, we think the fact that stillbirths have gone down while we have increasing monitoring and early delivery of women needs further attention to understand whether that really is responsible for the reduction in stillbirths in South Australia.

Third: at the national level, we need to standardise perinatal data collection and rigorously collect pregnancy termination data. South Australia arguably has the most comprehensive collection of termination data in Australia. With improved detection of fetuses with life-threatening congenital anomalies by 20 weeks of gestation, there has been an increase in the number of pregnancy terminations between 20 and 23 weeks gestation. If pregnancy was left to progress, some of these would end in stillbirth, some would end in neonatal or infant death and some may result in a severely disabled child. Data should be recorded nationally for terminations, lethal congenital anomalies, nonlethal congenital anomalies and psychosocial reasons. In some jurisdictions, all terminations at this time point are called stillbirths.

I point you to two tables from Stillbirths in Australia, 1991-2009, which I've tabled. If you look on the second page, I've highlighted, in table 4.1, that a significant proportion of stillbirths are due to what are called maternal conditions. I'd like to highlight that in Victoria this number is hugely greater than in the other states. If you turn over the page to table 4.2, you can see that these maternal conditions include termination of pregnancy for maternal psychosocial indications. A significant proportion of those Victorian stillbirths between 20 and 23 weeks are actually terminations for psychosocial reasons. We think that we need to much better document not only terminations but also the causes of stillbirth.

Senator MOLAN: What do you mean by psychosocial reasons? Is that aborting?

Prof. Roberts : Terminations are aborting, yes.

Senator MOLAN: Okay.

Prof. Roberts : We also think that we need to document as much as we can about stillbirth and other adverse pregnancy and birth outcomes for both mothers and children, and we need to have a discussion about socio-economic disadvantage. That, of course, is particularly relevant to our Indigenous population and a significant number of non-Indigenous women who live with social disadvantage and have elevated risk of stillbirth and other adverse pregnancy outcomes. Thank you.

CHAIR: Thank you, Professor Roberts. My questions could go to both of you, so I'll start with you, Professor Roberts. I refer to your opening statement in relation to needing to standardise perinatal data collection at the national level. I'm going to go to questions around that to assist our inquiry. What are the key barriers to accessing reliable and up-to-date data, and what contribution does policy or legislation make to these barriers?

Prof. Roberts : One barrier is the lack of electronic capture of all data in every jurisdiction in the country. In South Australia, perinatal data is not yet completely captured electronically. That, of course, will impede the timely delivery of data. Gustaaf might be able to speak more on the perinatal mortality data.

Prof. Dekker : It's not captured digitally; it's all manual work by a hardworking committee. It's inconsistencies between the states. When we try to compare South Australia with the other states, on our data we look the best, but, because we compare apples with pears, Victoria have a completely different dataset, and that should be comparable.

CHAIR: Who should be establishing that?

Prof. Dekker : I think that will be government.

CHAIR: So do you see particular pieces of legislation that are barriers to that occurring? Is there anything that we need to be aware of that you've come across in your line of work in that data collection?

Prof. Dekker : Not at the level of legislation. It's more habit, I think; this is what they've always done.

CHAIR: Professor Middleton, is there anything you wish to say in that space?

Prof. Middleton : Yes. I think that some of our difficulties arise because of our state and territory based system. We need to take a national approach, and perhaps that will require legislation. We're hearing of delays of three to five years for the relevant data to appear. To be able to do our jobs better and be looking at the causes and prevention of stillbirth, we need as close to real-time data as we can get, and we're a long, long way from that, for the reasons that Gus and Claire have talked about and also the very onerous and labyrinthine system that we have at the moment between the federal level and the state and territory level.

CHAIR: Numerous submitters have raised concerns about data and access to it. How do you propose that issues around applications and approval, data-sharing, data linkages and access for non-government researchers are addressed? What are your thoughts on that?

Prof. Middleton : I think there just needs to be a national body to tackle that. We really are doing it many times over. We're doing it eight times over. So we need to cut out some of those steps, and it's not something that is going [inaudible] privacy can be safeguarded. We know that, with all of these things, it is just quite a bureaucratic, cumbersome system at the moment.

CHAIR: What are your thoughts on even just the definition around stillbirth? What about the crossover of jurisdictions in that? Is there anything you'd care to add in that space?

Prof. Middleton : Again, a national definition would be very helpful. Claire has outlined some of the issues around inconsistencies in how terminations of pregnancy are dealt with, and the more standardised we can have that, the more able we will be to unpick some of the causes of stillbirth. But it is really difficult at the moment, and we're not serving our bereaved parents very well in not being able to unpick this, which is quite a messy situation, as I'm sure you've heard from others.

CHAIR: Yes, absolutely. To further assist our inquiry, as to the definition of stillbirth, we are looking at the international scene—and we've certainly had many witnesses provide their views. I'll go to you first, Professor Roberts. What would be, in your view, the best international definition or example?

Prof. Roberts : It relates to births and deaths and recording. For example, here we use 20 weeks gestation as the cut-off between prior to that miscarriage and stillbirth after that. In the Netherlands, where the data on stillbirth look better than in Australia, they actually use a different definition, and that is from 22 weeks gestation. If we look at South Australian data from 22 weeks gestation, it's actually similar to the Netherlands. So, if we use national guidelines—for example, by the Perinatal Society of Australia and New Zealand—and refer to the International Stillbirth Alliance and other international organisations, we can identify the best criterion.

Senator KENEALLY: Isn't it the case that the definition in Australia is 20 weeks or 400 grams?

Prof. Roberts : That is true; that's correct.

Senator KENEALLY: So we don't just use birth registrations at 20 weeks. A baby can be born at 19 weeks and be classified as a stillbirth under IAIHW.

Prof. Roberts : that's true. Sorry, I neglected that.

Senator KENEALLY: We had some evidence yesterday and the day before comparing Australia to the Netherlands and adjusting for 22 weeks and the different definitions. The evidence we had was that for Australia, if you adjusted and compared on the Netherlands definition, they had two stillbirths per 1,000 and we had five per 1,000 if we applied their definition to Australia wide. Do you have a figure that could help us apply just to South Australia per 1,000?

Prof. Dekker : There were four.

Senator KENEALLY: So for this committee, it would be useful then to be able to more closely examine—

Prof. Dekker : The Dutch have very recent data. I am from the Netherlands. I think the Dutch data for the last year before was higher.

Senator KENEALLY: Yes. The evidence we had was that, since they've implemented their different approach, they have been able to reduce the rate. I also ask a question on data that arises out of your submission. You say that South Australia arguably has the most comprehensive collection of termination data in Australia. You make the point that with improved detection of fetuses with life-threatening congenital anomalies by 20 weeks, there's been an increase in the number of pregnancy terminations between 20 and 23 weeks gestation. Does that mean those women have had a termination procedure or have they actually given birth?

Prof. Roberts : They've had a termination procedure. In South Australia it is legal up to twenty three weeks plus six days.

Senator KENEALLY: Because in other states those women might instead go through a birth process, an induced labour.

Prof. Dekker : That is termination by induction of labour.

Senator KENEALLY: Right. So it is an a termination by induction of labour?

Prof. Roberts : Yes.

Senator KENEALLY: With the greatest respect, do you think those women might consider themselves as having given birth?

Prof. Dekker : Yes, of course.

Prof. Roberts : Oh, yes, of course they do.

Senator KENEALLY: Because language matters. People who perhaps don't interact with this terminology very often may read pregnancy terminations as a different thing. They may not understand it as in fact these women have given birth.

Prof. Dekker : When looking after these women, we say, 'Of course you gave birth.'

Senator KENEALLY: The first reason I make this point is one because other people may come along and read these transcripts and find other meaning in this terminology. I'm not suggesting you are being insensitive so please don't take this comment in this way. But for many of the families we've heard from there is a frustration both around jargon and language, whether being told that a heartbeat can't be found rather than being told their baby had died or going through the experience of labour and delivery and birth but yet they're not being acknowledged as parents. That's the only point I wanted to make in terms of the language here. I completely understand as clinicians you use this language and understand what it means.

Prof. Roberts : We think that parenthood should absolutely be acknowledged for these couples. Most of them have planned that pregnancy and if they lose it, there is just way too much silence about that. People find it very hard to talk about stillbirth that they've gone through when other people just don't know how to talk to them about it. They don't know whether or not they should tell people. So I think, yes, we definitely have to consider it as parenthood.

In regard to the doctor-induced terminations when a lethal congenital anomaly has been diagnosed, 35 years ago when my first baby died with a massive heart defect that was incompatible with life, if I had known at 20 weeks that he had no hope of survival I may not have gone through that next 18 weeks of pregnancy. I think that it's a very brave decision of these women who decide to terminate their pregnancy because they have a child with a lethal anomaly. It's a very difficult decision. It's also a very difficult thing to go through another 20 weeks of pregnancy knowing that your baby has no hope of survival.

Senator KENEALLY: I understand that. This is not about us as senators, but I have made that decision in my life as well and I completely understand the point you are making. In your submission you say: 'If a pregnancy was left to progress some of these would end in stillbirth'. I guess my point is, they've already ended in stillbirth.

Prof. Roberts : If a woman makes the decision because she has a fetus with a lethal anomaly, if the pregnancy goes on, some of those babies will die prior to delivery but some, like my son, would not be diagnosed until after birth. They're making a decision, but the timing of the later death is a little arbitrary. To start calling one stillbirth and one neonatal death, it's still a huge pregnancy loss.

Senator KENEALLY: I think you and I would agree that all of these pregnancies that end—whether they end at 20 weeks or 38 weeks—need to be investigated and counted so that we have a scale of the picture.

Prof. Roberts : Absolutely.

Senator KENEALLY: The risk that we run is that if we start discounting births, stillbirths, terminations—whatever the term is—at 20 and 21 weeks, we risk losing a big part of the picture as to why stillbirth occurs.

Prof. Roberts : Absolutely, but we need good documentation of the causes.

Senator KENEALLY: Yes.

Prof. Dekker : The causation is completely different, of course. When we look at avoidable stillbirths—which are probably the most important part—and then you go to the later term pregnancies and you look at things that we can really predict and also really prevent. While, with the congenital anomalies, as Professor Barnett said earlier, it is still further away.

Senator KENEALLY: Yes; and there you are referring to things like fetal growth restriction, placenta failure—

Prof. Dekker : GDM and obesity—our daily struggle.

Senator KENEALLY: Yes, and smoking. Thank you.

CHAIR: Professor Middleton, did you want to add something to Senator Keneally's discussion?

Prof. Middleton : No, only to agree that we need to be counting all stillbirths. Whatever the circ*mstances for those families, it's very important to recognise a pregnancy loss—and we're not doing the best we can at the moment.

Senator MOLAN: Senator Keneally's comments to you in that discussion that I listened to then clarified a number of the issues that I have. You raised the issue of the unusual, abnormal number of termination of pregnancy for maternal psychosocial indications. I don't fully understand why Victoria has such an extraordinary number. Am I missing something there?

Prof. Roberts : It's just the way they document.

Senator MOLAN: Okay. That's fine.

Prof. Dekker : The number appears to be very high.

Senator MOLAN: I wondered if that was the case. Let me begin by saying that I stand in absolute awe of the doctors that my children and my wife have dealt with in that they care so much. Some of the witnesses have said to us that obstetricians miss things or don't say things and that we don't address the possibility of stillbirth at an early stage. What's the college doing about it? Is that not college business? Shouldn't they be out there driving this through? Who owns this particular problem within that community?

Prof. Dekker : College guidelines talk about the interpretation. Take the classic example of reduced fetal movements. We have now agreement—I'm also part of the Still Aware group here, which is about patient education—that if you come in with reduced fetal movements, you need to do a set protocol of tests.

Senator MOLAN: And the college lays that down?

Prof. Dekker : Quite clearly. Now you get to health care as it works, because that means a quick scan for which, at least in South Australia, the support is not there. There's a place for biomarkers. We don't get funded, so now we're directly confronted with a very frustrating government. I'm probably looking at all levels of government here.

Senator MOLAN: I see the difference.

Prof. Dekker : The guidelines are there.

Senator MOLAN: The guidelines are there, but the practicality—

Prof. Dekker : Because it's not seen as a high priority.

Senator MOLAN: Others have spoken about an external authority that midwives might be able to talk to in certain cases. Others have talked about KPIs and sub-KPIs that support the major KPI of reducing the number of stillbirths. Who supervises the delivery of that health care or the practicality of the delivery of health care? It's too late for mums to go back and say, 'Well you didn't tell me to count the kicks,' or whatever.

Prof. Dekker : It's happening now, and the health services are better, but that's more midwives and doctors. In South Australia we have, I think, a good perinatal group that looks at all perinatal deaths. This is primarily for death classification and causation. Occasionally we do see problems with standards of care. If there is a broader theme, it will be picked up in the next annual report. But if it appears to be individual healthcare units, in a very careful and appropriate way we try to contact the healthcare provider. But we do also hear terrible reports of people that still get the wrong advice from their obstetrician or midwife, and these are very frustrating events for us, of course.

Senator MOLAN: We heard this morning that in one hospital in South Australia every Monday, I think it was, there is a meeting which looks at all the autopsies.

Prof. Dekker : All hospitals do that.

Senator MOLAN: All hospitals?

Prof. Dekker : All the hospitals have a monthly meeting where they look at all perinatal deaths.

Senator MOLAN: Good. I assume that then feeds back?

Prof. Dekker : Yes.

Senator MOLAN: That's good. Do you see the skill level and dedication of the individuals as being a problem or not? We're saying 'educate', but who are we educating?

Prof. Dekker : The dedication is there. There is a role for ongoing education, and that goes from the patients to the nurse to the midwives to the doctors. We're working hard on that, but there's room to go. All this type of activity is clearly not funded, so people do this in their free time in the evenings with meetings, et cetera.

Prof. Middleton : I think education is a big part of this. One of the things that has happened in the past is that women sometimes say—you may have already heard this—'Nobody ever told me that stillbirth was a possibility.' I think this is changing. Midwives, in particular, are now talking very early in pregnancy and getting that balance between not scaring women but informing women and talking about some of the risk factors. I think that's quite a recent but big change that is happening. That's very welcoming. This is a huge tide to turn. As Gus says, we do need more resources to make sure that this happens in every service and not just some of them.

Senator MOLAN: Thank you, Professor. The last question I have is on data. God help us all, if the my record is likely to contribute in any way, shape or form to this, might that be a source?

Senator KENEALLY: My Health Record.

Senator MOLAN: What was it called?

Senator KENEALLY: My Health Record. I thought you said 'my record' and I was trying to work out how you, Senator Molan, were going to volunteer!

Senator MOLAN: My Health Record—whatever it's called. The electronic thing that our government has put in place—or is trying to. Is there any hope of using that as a vehicle for data research?

Prof. Dekker : There might, but for me the big gaps are in the medical funding model. That's my main issue. There's no proper funding for looking after these women or how often you see them to inform them and educate them. That's where the big gap is. Better data will be held—if the government gets their act together on safety, we'll probably get there. Yes, there is a promise to get better data.

CHAIR: I might go to you, Associate Professor Middleton, in terms of evidence that we've received over the last few days and in submissions in relation to First Nations women and families and also in terms of non-English-speaking-background women and their families. Would you be able to share your views with the committee? You've obviously raised that in your submission as well, in terms of data collation in this area.

Prof. Middleton : In this area, I'll talk about Aboriginal and Torres Strait Islander experiences first. There is so little documented in this area. In our meeting that we had on Wednesday that I mentioned in my preamble, we confirmed that there just has been so little work recorded. I know there is work being done, but it's not recorded and not available to people. That's one of the first priorities that our nascent group is looking at. The top priority that came out of that meeting is to really understand better what is happening for women and families who have experienced a stillbirth and what their journey through the health system is. We know there still remains a large proportion of institutional racism that we need to address.

We need to improve models of care. In South Australia, we have the Aboriginal Maternal Infant Care partnership model. AMIC workers are working in partnership with midwives. We are seeing some improvements in health outcomes, but there's a long way to go. There are all sorts of issues, as we all know, about health services compounding the intergenerational trauma and various conditions that Aboriginal women come into pregnancy with. We know our Aboriginal health workers have an enormous load on them. They are on call from work and from community 24/7, so it is easy to be burnt out. There are things that we, through a national group, want to address. We work towards prevention for and better care of Aboriginal and Torres Strait Islander families who have experienced stillbirth. There's a lot of work to do, and that needs to be done urgently. There are similar considerations for migrants and refugees. Sometimes we think it's just a language issue, but it's far deeper than that.

CHAIR: I will just go back to your comment about the conversations you are having in Brisbane. Is that where you are?

Prof. Middleton : Yes.

CHAIR: You said that some of the issues raised were around institutionalised racism. Would you like to give examples to the inquiry of what you mean in relation to that?

Prof. Middleton : Clearly, it covers many things, but I'll talk about one aspect that has been documented from a midwife who did her PhD with us not so long ago. One of the manifestations of that is that there is a tendency to say, 'Well, we treat all women the same.' On the surface, that sounds right. Maybe that's what you should be doing; but when you think about it further, all women are not the same. We should be talking about care that follows equity principles, and care should be based on the needs of women. That is one example of institutional racism. It's also the lack of recognition of the circ*mstances of women, cultural needs and the cultural appropriateness of care. It is even down to things—which has changed in our hospital—like how many family members are allowed to visit a woman giving birth. There used to be a cap on that, which is no longer there. That's a smallish example, but an important example. There are many aspects to this, and we need to address them.

CHAIR: Thank you, Professor Middleton. I'll just go to Professor Roberts or Professor Dekker, if there's anything you wish to add or contribute in that area.

Prof. Dekker : On the specific aspects?

CHAIR: That's right, or working with First Nations families or women from non-English-speaking backgrounds.

Prof. Dekker : I work in the northern suburbs of Adelaide and actually it's the third and fourth generations of people from England, with their massive obesity, that's a big burden of disease for all pregnancy complications and stillbirth. Number wise—if I look at the total of stillbirths in our hospital, we do about 4,000 births—that's by far the biggest number. Actually, particularly people from Asian countries, because they tend to be leaner and have cohesive families, actually do much better. It's the poor English migrants with three or four generations of unemployment, no access to healthy food, drugs and gambling—et cetera, all the risk factors—that are pushing us in the northern suburbs of Adelaide.

CHAIR: Associate Professor Middleton, Professor Decker and Professor Roberts, thank you all for your time this afternoon and the evidence you provided to the inquiry. We will now suspend the hearing.

Proceedings suspended from 12 : 26 to 13:53