ARC policy statements
ARC’s view on abortion law time limits in England, Scotland and Wales
The law in England, Scotland and Wales states that termination of a pregnancy may be carried out up until the end of the 24th week of pregnancy (with the exception of cases under what is commonly known as Ground E of the Abortion Act 1967). There have been calls for this legal time limit to be reduced, but ARC will always defend it being maintained at 24 weeks.
- Despite the better provision of first trimester antenatal screening tests, it is important not to assume this means that all parents can opt for earlier terminations of pregnancy in the context of fetal anomaly. In fact, many fetal anomalies (around 40%) first become apparent at the mid-pregnancy fetal anomaly ultrasound scan which is scheduled between 18+0 to 20+6 weeks of pregnancy.
It is not possible to offer this scan earlier without compromising its effectiveness and some hospitals book women in for the scan at 22 weeks as it is felt optimal views of the developing baby can be obtained at this stage.
We take calls every day on our national helpline from parents who are reeling from the shock of being given unexpected news about their baby’s development at this mid-pregnancy scan, struggling to take this in and to know how to proceed. They almost always face further tests to try to establish the outlook for their baby. They then have to make the painful decision about the future of what is most often a much-wanted pregnancy. Any encroachment on the current time limits will result in added pressure on them at a time when they can least withstand it.
- Although post-24 week abortions are permitted under certain conditions under Ground E, there has always been professional caution around sanctioning terminations of pregnancy for fetal anomaly after 24 weeks. This means when an anomaly is diagnosed after the mid-pregnancy scan, some parents are asked to make a final decision about ending their pregnancy before the end of the 24th week.In our three decades of supporting parents in the aftermath of a termination for fetal anomaly, we have learned that a major factor in the emotional recovery of parents who choose to end their pregnancy is that they can look back and feel confident that they were able to access and assimilate information about the diagnosis and the time they needed to work out the way forward that was right for them and their baby. In some cases, parents may discover over time that the outlook for their baby improves and the opportunity to delay the decision means a pregnancy may be continued to term.As the current 24-week abortion time limit appears to be seen by many clinicians as a ‘line in the sand’2, it seems safe to assume that if there were to be a reduction then this gestation would become the new reference point. The knock-on effect on parents faced with a diagnosis of fetal anomaly would be that they may have to make decisions very quickly after their scan, perhaps foregoing the opportunity to have further testing or monitoring because they fear the option of termination may be withdrawn if they delay. A reduction in the upper time limit would add an extra level of stress to an already traumatic situation.
Our long experience tells us that parents who make the painful decision to end the pregnancy do so after careful consideration of what the diagnosis may mean for their baby’s quality of life and what it might mean for themselves and their family’s future. In order to come to the best decision they can within their individual context they need good information, compassion, support and time. We owe it to these parents not to make a distressing situation any worse and so ARC will always defend the abortion law time limit as it stands.
2. : Lotto R, Smith LK, Armstrong N. Clinicians’ perspectives of parental decision-making following diagnosis of a severe congenital anomaly: a qualitative study. BMJ Open 2017;7:e014716. doi:10.1136/ bmjopen-2016-014716
ARC’s view on ‘Ground E’ of the Abortion Act
Section 1 (1)(d) of the Abortion Act 1967 (commonly known as ‘Ground E’), which applies in England, Scotland and Wales, states that a pregnancy can be legally terminated if ‘two registered medical practitioners are of the opinion, formed in good faith—…that there is a substantial risk that if the child were born it would suffer from such physical or mental abnormalities as to be seriously handicapped.’
Because it was drafted over half a century ago the language of Ground E is outdated and insensitive. However, we know from our decades of experience of working with parents and clinicians that it is vital this law remains unchanged.
- The real value in ‘Ground E’ lies in the fact that the way it is drafted allows for a certain amount of flexibility.The fact that two doctors must decide in good faith that what is detected in pregnancy represents ‘substantial risk’ of ‘severe handicap’, (with neither term defined) allows for careful clinical judgment by clinicians on a case by case basis, without gestational limit, depending on all of the circumstances.
- From the close working relationships ARC has established and maintained with fetal medicine clinicians, we can attest to how seriously clinicians take their legal responsibilities, particularly in cases after 24 weeks’ pregnancy.ARC’s Director Jane Fisher is a public and patient voice member of the NHS England Clinical Reference Group for Specialised Women’s Services, the body that covers commissioning of fetal medicine services. ARC is regularly asked to speak at conferences and meetings for fetal medicine clinicians, including the British Maternal Fetal Medicine Society, the Fetal Medicine Foundation and the International Society for Prenatal Diagnosis.
- In the last decade, there have been developments in testing technologies that enable diagnoses of many conditions to take place well before the scheduling of the major fetal anomaly scan at around 20 weeks. However, it remains the case that a significant number of fetal anomalies are not detectable until the fetal anomaly mid-pregnancy scan, or later.When a baby is found not to be developing as expected at the ’20-week scan’ there will be further testing and monitoring offered, which will bring some parents very close to or beyond the 24-week limit for most abortions. If what are currently known as Ground E terminations were to be restricted beyond 24 weeks, it would put untenable pressure on parent decision-making and is likely to mean some will decide to end the pregnancy before awaiting more information, fearing that this option may be removed.
ARC believes that removing ‘Ground E’ would be detrimental to parents faced with any late fetal anomaly diagnosis. Some serious conditions, including those affecting fetal brain development, do not appear until the third trimester of pregnancy. We hear from parents on our helpline reeling from unexpected news after attending what they believed was a routine ultrasound at 28 weeks to check the position of the placenta or to confirm that their baby was within expected growth parameters. In some cases, further investigations, including magnetic resonance imaging, will reveal serious brain anomalies which are likely to have severe impact on the child’s quality of life if born.
- Some people believe that ‘Ground E’ is discriminatory to people living with disabilities. It is of course important that those who are in the world, living with disabilities, do not face discrimination and have access to the care and resources they need. Yet this principle can still be upheld while still retaining choice after prenatal diagnosis.Decisions women make after prenatal diagnosis, are not prejudicial against those living with disability, they are made within the context of their individual lives.It is important to say to anti-discriminatory legislation is applicable to born persons, not to the fetus or unborn baby.
Finally, the last word must go to three women ARC supported after post 24-week terminations after a prenatal diagnosis of fetal anomaly who gave permission for their quotes to be used anonymously in support of the law remaining unchanged.
Forcing us to make a decision before the full consequences of our daughter’s abnormalities had been discovered and had been explained by both our obstetrician and a paediatrician, seems quite frankly ridiculous and unnecessary. Due to abnormalities having varying degrees of severity, doctors rightly take time in exploring the particulars of each patient. I would hate to see medical professionals feeling pressured into providing answers to questions they might not have time to gather information on. Or parents being forced to make decisions without all the facts. It is a hard enough decision to make without any added time constraints.”
Our geneticist informed us that his life would have been short and painful, and similar babies have died in hospital within weeks of birth. To think that the choice to terminate the pregnancy might not have been open to me, and that I would have been forced by law to take the pregnancy to term, knowing what fate the baby would meet, is quite unthinkably cruel. Let alone the question of how I could possibly have managed emotionally to bear the situation for a further 16 weeks, I have another very young (healthy) child who needs my care and I dread to think how we could have coped with the pain and stress.”
Sitting in a room waiting to be called in to have an injection in your stomach to stop your baby’s heart is not something anyone does lightly or out of prejudice, it’s a decision made out of love. Giving birth to my son knowing I have saved him from pain holding him and saying goodbye to him, having all our friends and family at his funeral to say hello and goodbye to him is the only thing in this whole nightmare that gave me comfort.”
- Ending a wanted pregnancy after a prenatal diagnosis is a painful experience at any gestation and no expectant parent makes the decision lightly. From our 30 years’ experience at ARC it is our view that the law as it stands enables parents, in consultation with their clinical team, to make the best decisions they can for their family’s future. Restriction of the law would add distress to an already harrowing circumstance.
ARC’s View on Bereavement Care
From our long experience of working with parents who lose a baby due to a termination of pregnancy for fetal anomaly, we know how important it is that parents are supported with high-quality, individualised and well-coordinated care.
This means not only at the point at which the decision to end the pregnancy is taken, but also when choosing the termination method, memory making with the baby, taking decisions about a post mortem examination and histology, registering the baby’s birth and death, making choices about what happens to the baby’s body, and being discharged. It also means the availability of ongoing emotional support and support with any subsequent pregnancies.
In 2017, ARC partnered with a number of organisations to launch the National Bereavement Care Pathway (NBCP) for pregnancy and baby loss. It includes a specific set of guidelines for parents facing termination for fetal anomaly, which can be read here. ARC wants to see these adopted in all areas of the UK.
The nine NBCP bereavement care standards that appear below were launched for England during Baby Loss Awareness Week 2018. It is our belief that every NHS Trust should ensure the following:
- A parent-led bereavement care plan is in place for all families, providing continuity between settings and into any subsequent pregnancies.
- Bereavement care training is offered to staff who come into contact with bereaved parents, and staff are supported to access this training.
- All bereaved parents are informed about and, if requested, referred for emotional support and for specialist mental health support when needed.
- There is a bereavement lead in every healthcare setting where a pregnancy or baby loss may occur.
- Bereavement rooms are available and accessible in all hospitals.
- The preferences of all bereaved families are sought and all bereaved parents are offered informed choices about decisions relating to their care and the care of their babies.
- All bereaved parents are offered opportunities to make memories.
- A system is in place to clearly signal to all health care professionals and staff that a parent has experienced a bereavement to enable continuity of care.
- Healthcare staff are provided with, and can access, support and resources to deliver high quality bereavement care.
ARC will continue to champion these standards and are keen to see them adopted in all four countries of the UK