Episode 38 Ethics

Obstetrics can be an ethical minefield , what is considered ethical varies with our own personal beliefs, where in the world we practice, legislation, societal opinion and many other issues.
Listen to me to discuss the issues surrounding Down's syndrome screening in the UK how it has evolved over time , and how changing attitudes may influence it in the future

For more information you may like to explore:
Definition of a screening test https://www.bmj.com/content/suppl/2001/04/19/322.7292.986.DC1
Information on screening for pregnant women & professionals
https://www.arc-uk.org/
https://www.rcog.org.uk/en/news/advice-for-health-professionals-providing-pregnancy-screening-tests-published/

Information about Down's syndrome & peer support
https://positiveaboutdownsyndrome.co.uk/
https://dontscreenusout.org/
You can find out more about me on Twitter @FWmaternity & @TheObsPod as well as Instagram @TheObsPod please check out #MatExp matexp.org.uk for ideas about how to improve maternity experience.
 
  My beautiful artwork is thank to Anna Geyer www.newpossibilities.co.uk

Thank you all for listening,  My name is Florence Wilcock I am an NHS doctor working as an obstetrician, specialising in the care of both mother and baby during pregnancy and birth. If you have enjoyed my podcast please do continue to subscribe, rate, review and recommend my podcast on your podcast provider.
If you have found my ideas helpful whilst expecting your baby or working in maternity care please spread the word & help theobspod reach other parents or staff who may be interested in exploring all things pregnancy and birth.
Keeping my podcast running  without ads or sponsorship is important to me. I want to keep it free and accessible to all but it costs me a small amount each month to maintain and keep the episodes live, if you wish to contribute anything to  support theobspod please head over to my buy me a coffee page  https://bmc.link/theobspodV any donation very gratefully received however small.
Its easy to explore my back catalogue of episodes, I have a wide range of topics that may help you make decisions for yourself and your baby during pregnancy as well as some more reflective episodes on life as a doctor.
If you want to get in touch to suggest topics, I love to hear your thoughts and ideas. You can find out more about me on Instagram @TheObsPod and email me on TheObsPod@gmail.com Please also check out #MatExp matexp.org.uk for ideas about how to improve maternity experience.
My bea...

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Florence 0:00

Hello, my name's Florence. Welcome to the Obspod. I'm an NHS obstetrician, hoping to share some thoughts and experiences about my working life. Perhaps you enjoy Call the Midwife, maybe birth fascinates you, or you're simply curious about what exactly an obstetrician is. You might be pregnant and preparing for birth. Perhaps you work in maternity and want to know what makes your obstetric colleagues tick, or you want some fresh ideas and inspiration. Whichever of these is the case, and for that matter anyone else that's interested, the obspod is for you. Episode thirty eight Ethics. The definition of ethics is from Greek. It's a system of accepted beliefs that control behaviour. Ethics are described as a system based on morals. Morals are standards for good or bad character and behaviour. Medical ethics is a specific subject, the judgment of right or wrong acting in the interest of a patient. And I can't possibly hope to explore the whole of medical ethics in my podcast. I can't even hope to explore all the issues that are found in obstetrics and gynecology. In a career in ONG, it's hard to escape moral and ethical decisions. A specialty that at first glance seems brimming with new life and happiness, can appear to be straightforward, but can be far from so. This is quite a heavy topic. I can hear you thinking, really, is this the way we want to start the new year? But it's an important one I've been pondering for some time how I might approach in my podcast. There are some particular issues that I need to talk about, but it's hard to know how to approach them in the right way. Last week I touched on the basic premise of mother before baby and the balance of caring for two people simultaneously, something that's unique to maternity care. Everything in maternity care is finely poised, dependent on that balance at any given point in time. Right or wrong. Accepted beliefs will vary depending on the culture and beliefs not only of the women you care for but the country in which you practice. Our task as doctors is to accept differing beliefs without judgment and support families making them. Right and wrong suggests there are clear binary choices, whereas the reality in practice is far more shades of grey than straightforward black or white. An additional challenge is the changes in belief or acceptable practice over the course of a career which might span 30 or 40 years. Something that was acceptable at the beginning of a career needs to be put aside and we need to re-educate ourselves. This is part of what we aim to achieve through continuing professional development, updating ourselves as to current practice. But this is more than staying up to date with knowledge. It's understanding societal context. So today I want to explore the ethics of screening for fetal anomalies. As I mentioned in episode 20, scans, the detection of fetal anomaly by ultrasound is relatively recent. That is it started within the last 50 years. And if I take a look back at my 1930s obstetric textbook once more, the book groups fetal anomalies into a heading monsters. Yes, this is totally unacceptable in current times, but we must remember this is still within living memory. The chapter continues to describe which monsters will cause obstructed labour and therefore risk damage or death to the mother. And in view of this, there are detailed instructions on destructive techniques to try and deliver the fetus and save the mother's life. On this background, it makes total sense that scientists wanted to work to diagnose anomalies earlier in pregnancy and avoid this life-threatening situation. Now let's add in the Abortion Act 1967. I work in the NHS in the UK. Since 1967, abortion has been legal, something I take for granted, but something that women of my mother's generation will not have done. Whatever you believe about the sanctity of life and the point at which a fetus or embryo becomes a person, the culture within which I work in the NHS is that of legalised abortion. To undertake an abortion, two registered medical practitioners must agree that up to 24 weeks the continuance of the pregnancy would involve risk greater than if the pregnancy was terminated of injury to the physical or mental health of the pregnant woman or any existing children of her family. The woman's actual or reasonably foreseeable future environment must be taken into account. Beyond 24 weeks, so with no time limit, termination is allowed if necessary to prevent grave permanent injury to the physical or mental health of the pregnant woman, if there is a risk to the life of the pregnant woman greater than if the pregnancy were terminated, or if there's substantial risk that the child, were it born, would suffer from physical or mental abnormalities as to be seriously handicapped. In effect, this gives a woman a right to choose. In Gyne as a trainee, I would sometimes have to do the top TOP termination of pregnancy clinic, something I felt ill equipped to do. This would be a whole half day of women wanting to terminate a pregnancy for a variety of distinct reasons. My role was to ensure they understood the basic surgical procedure complications and screen them for infections that might cause complications and advise them on contraception for afterwards. Then book them in for the surgery. This was a clinic everyone dreaded, mundane, tedious, depressing, a stream of miserable patients, tearful, anxious and fearful. A decision to terminate a pregnancy is never undertaken lightly. There were many reasons that of age, too young or too old, financial constraints, disapproval of family, secrecy of relationships, failure of contraception, all vulnerable women, and with me feeling I did not have sufficient knowledge to counsel and support them. Although I disliked the clinic, it was something I felt came part and parcel with my choice of career. In my current hospital, for contractual reasons, we only perform terminations for anomalies. Some of these will be surgical, yes, but some of these will be medical, inducing labour at a very early stage of pregnancy. Despite this, I still have colleagues that due to their own religious beliefs opt out. They will not sign the legal bloom form detailing the reasons that I've mentioned above, and it is their legal right to do so. I'm also aware that there are very different attitudes to termination of pregnancy and legislation in different countries. Poland, America. There are many countries that are having very controversial discussions about termination of pregnancy. And close to home, my colleagues in Northern Ireland already face a very different situation. Let's return to screening. Any screening test has key criteria. To very briefly summarise, the condition should be an important health problem, the test should be acceptable, and there should be an effective treatment or intervention for patients identified through early detection, with evidence of early treatment leading to better outcomes than late treatment. So here we are in the 1970s. We have the ability to screen for fetal anomalies. We've started scanning. We also have legalized abortion. This is an opportunity if we detect an abnormality to end the pregnancy at an earlier stage, a less risky stage, rather than wait for a situation which might put a woman's life at risk. Reasonable, yes? I think most people would agree. Okay, let's move a step further. Let's turn to Down syndrome screening. Down syndrome is the most common chromosomal defect causing learning disability. Incidence increases with maternal age with a frequency of one in a thousand pregnancies at age 20, but a frequency of one in a hundred at age forty. This is an anomaly that does not risk the life of the mother. Some babies will have structural abnormalities causing physical health problems. A common example might be a heart defect requiring surgery and treatment. Screening was introduced in 1989 using blood markers, taking a blood test from a woman and looking at some specific markers of pregnancy, which helped determine whether or not the baby might have a chance of having Down syndrome. Screening focuses on the chance of a baby having this genetic makeup. It is an important health problem. The test is acceptable. Then the next bit, we should have an effective treatment. We can't do anything about the learning disability. We can do something about the structural physical health problems. Termination of pregnancy is not a treatment, no, but it might be an option for some women and families. Screening focuses on the chance of a baby having this genetic makeup. If the screening comes back positive, there's a higher chance of this baby having Down syndrome, then the traditional next step would be to offer a diagnostic test. These are invasive tests, such as amniocentesis or chorionic villus sampling, taking a sample of tissue from the pregnancy to give us definitive information. When I qualified, the main consideration as to what was an acceptable chance of a baby with Down syndrome or not was balancing the risk of an affected baby not being diagnosed versus the risk of causing a miscarriage in a healthy pregnancy. So it's no wonder that over time scientists have become determined to improve our screening tests. Screening has become increasingly sensitive and specific. A higher chance that if there's a positive result, it does actually reflect an increased chance of having a baby with Down syndrome and less chance of there being a normal pregnancy. Nucle translucency, a measurement on the back of the baby's neck at 12 weeks, was introduced in the 1990s, the time around which I was pregnant myself. This improved things over the serum blood tests that were taken at 16 weeks. Then we move to first trimester screening. So we take the measurement of the nuclear translucency, the mother's age, and blood tests at 11 or 12 weeks and come out with a screening result that gives a chance of an affected baby or not. And then very recently we can add in non-invasive prenatal testing where we can study the chromosomal makeup of the free fetal DNA found in the mother's blood. It's an additional screening test, reducing the false positives from nuclear translucency and serum markers alone, but still needs confirmation with a diagnostic test. But this means we're doing far fewer amniocentesis and CVS so that we are having an impact on far fewer healthy pregnancies. Surely that's a good thing. Alongside Down's syndrome, which is trisomy twenty one, an additional copy of the twenty first chromosome, there's also trisomy eighteen Edwards and Trisomy 13 pathouse. These can also be detected in this way. All three can be associated with increased pregnancy loss and structural abnormalities. The difference is that Edwards and Patows results in pregnancy loss or early neonatal death. The baby simply cannot survive for longer than a few weeks or at maximum months. The contrast with Down syndrome is that individuals with Down syndrome now have a good life expectancy, averaging 50 years or longer. So in the time that the scientists have been increasing and improving the screening tests, some of the information about the life an individual with Down syndrome might expect has changed. Let's think about that in a bit more detail. When I was growing up, I had personal experience of a girl with Downs. She was exactly the same age as me, and when we were young we played together. As we grew up, it became more difficult. The differences between us became wider and wider. It became harder for me to understand as a child why I was leaving her behind. She went to a special school. As I grew up and left home, she didn't. It was a big contrast to the life I was experiencing. That was growing up in the nineteen seventies and eighties. So even in my lifetime, we've seen radical changes in the life experiences of individuals with Down syndrome. Now society has a very different attitude to disability. Many more children with Down syndrome or other disabilities attend mainstream school. Having special educational needs or Senko support is relatively common and is embedded in our education system. Because individuals with Down syndrome are living to adulthood in greater numbers, they are achieving different levels of independent life, careers, families, and they're actively speaking out. I've included a link to the campaign Don's Screen Us Out run by individuals with Down syndrome who feel strongly that they're being screened out and babies similar to them are being terminated and that this isn't acceptable in a society that now values and appreciates diversity. And the organization positive about Down syndrome has produced the most amazing book called Nobody Told Me, which highlights the wonderful impact individuals with Down syndrome can have on their parents, on their siblings, on their grandparents and the community around them. So there have been radical changes in the last 30 or 40 years. While the scientists have been pioneering ever more sensitive tests to screen for Down syndrome, there's been a changing attitude in society. Down syndrome screening may make sense on the basis of population in nineteen eighty nine, but doesn't necessarily fit with new expectations of life expectancy, independence and diversity now. One of the key differences with Down syndrome may be that we can screen for it. It's relatively easy for us to detect, whereas many genetic syndromes or problems that children have now, we can't we can't screen for them, or they're not cost effective in screening. So is Down syndrome screening a relic? Something we shouldn't be offering? I don't think I'd go as far as that. I think it's important to have choice and information, just as with any other aspect of maternity care. We're at a point now where people struggle with children with all sorts of different genetic conditions and all sorts of special educational needs, but we simply don't have tests that may help us diagnose them, so we're unable to give women choices, knowledge and information on those conditions. Let's think about the zesty bit. We need to suspend our own beliefs. Be prepared not to be judgmental. Check your own bias. Think about the way you present information and educate yourself. A lot of doctors and midwives do not have personal experience of individuals with Down syndrome. Or if they do, like me, they may only have had a single experience and therefore not appreciate what the alternatives might be. Over time, many parents of children with Down syndrome and many individuals with Down syndrome themselves have been campaigning to try and ensure that the way the information is presented to parents is unbiased. They're concerned that counselling should not suggest that a baby with Down syndrome equates to the need for a termination of pregnancy. We've been doing some work on attitudes and the language used to talk to parents about Down syndrome with the Who Shoes maternity work, and we've held a number of workshops on that specific topic at the request of midwives, doctors, and parents to try and understand better how to have these conversations and make sure women are given informed choices. I'm delighted to say in December the Royal College of Obstetricians and Gynecologists joined together with the Royal College of Midwives and Royal College of Radiographers to have a consensus statement giving professionals clear advice on how to speak to women and their partners about screening options. The president of the college said that it was important that the information to support women and their partners should be impartial, fact. And respectful so that families can make a personal and informed choice. It's important that the options to them are provided in a non-directive manner and that their choices are accepted, noted, and respected by medical staff. So my zesty bit today is if you're a midwife or a doctor, counselling about screening, whether or not to have screening tests and what do the results mean, think about that. Factual, impartial, non-directive information. If you're a pregnant woman listening to this and thinking about having Down syndrome screening, make sure you understand what the screening tests are for, what the potential outcomes might be, and if you feel that your doctor or midwife hasn't given you sufficient information on which to make a decision, or unbiased information, ask for more help. And you might like to explore some of the links that I've put in today's programme notes. And today I'm going to end with a poem. This poem is part of a who's shoe set of material that my friend Jill Phillips developed in response to people that wanted to explore this issue of Down syndrome screening. This poem was written by Mel Smith, who can be found on Twitter at Grapevine Mel. Mel wrote this poem from her personal experience, and I'm absolutely delighted that she's agreed to read it for you today.

SPEAKER_00 24:09

Imagine all those years ago if I knew what I know now, that he'd be an actor, a whiskey drinker, a wild swimmer, a gym freak. Imagine all those years ago if I knew what I know now, that I'd be watching him on stage, drinking gin whilst he drank whiskey, swimming alongside him, wishing I was as fit as him. Imagine all of those years ago if I knew what I know now, but somehow it got messy, the script dismal, the drink toxic, we were drowning, fit for nothing. Imagine all those years ago if I knew what I know now, that messy was in fact beautiful, that the script was ours to write, that toxic was just a mindset. We were waving, not drowning. We were fit for everything.

Florence 25:06

I do hope you've enjoyed listening to this episode of the Obspod. Feel free to contact me on Twitter at FW Maternity or at the Obspod to ask me questions, give me topics for future episodes, or let me know what you think. It's absolutely fantastic when you get in touch. I really enjoy reading your comments. As usual, I've tried to include in the programme notes some extra reading about this particular topic, both for professionals working in maternity care and for pregnant women using services. I'd like to reassure you that although I'm talking about my experiences working in maternity care, I take confidentiality very seriously and do not give any personal information about any of my patients. If you've enjoyed listening, I'd love you to recommend the Obspod to friends or colleagues, and please do leave me a review on whichever podcast directory you find my episodes. Many thanks for listening.