I thank the joint committee for giving me the opportunity to come before it. I hope my contribution will be helpful in its deliberations.
I am the master of the National Maternity Hospital which is one of Europe's largest maternity hospitals and in which 9,000 babies are delivered every year. It is a major Irish tertiary referral centre which provides advanced obstetric, neonatal and gynaecological care. I am a specialist in maternal and foetal medicine and an honorary clinical professor with the Royal College of Surgeons in Ireland. My submission is based on my clinical experience as both an obstetrician and a master practising in the Republic of Ireland under the terms of the Protection of Life During Pregnancy Act 2013 and Article 40.3.3° of the Constitution, commonly referred to as the eighth amendment. These legal instruments govern the circumstances in which a termination of pregnancy can be lawfully performed in this country.
Termination of pregnancy is defined as the intentional procurement of a miscarriage. In other words, it occurs when a pregnancy is interrupted prior to foetal viability and neonatal intensive care is not provided. At present, 24 weeks of completed gestation represents the threshold of viability, whereby the provision of sophisticated neonatal intensive care is associated with approximately a 50% survival rate of the foetus. This is not an absolute cut-off point and some babies will survive at 23 weeks, while others will not be viable at 25 owing to complications of extreme prematurity. When a baby is delivered, in whom viability has been reached and for whom intensive care has been provided, we refer to this as a delivery, not a termination of pregnancy.
The subject of termination of pregnancy is deeply complex and, not surprisingly, it provokes strong views and many differences of opinion. We know approximately 3,000 women travel to the UK every year from this country to obtain termination of pregnancy. Our Constitution protects women travelling abroad for termination of pregnancy in circumstances that would be a criminal offence in their own country. In effect, this means that women in Ireland have similar access to termination of pregnancy as women in the UK, with the exception of children and women of limited means who do not have the ability to travel. It is impossible not to be affected by the personal testaments of individual women and their partners and, although every case is unique, it is evident that with the current position in Ireland, women will continue to travel to the UK or access unknown medication from potentially unregulated sources using the Internet with all the attendant clinical risk.
Somewhere in the midst of public opinion is the need to ensure that women in Ireland have access to sound clinical care, and I would like to address the following clinical issues. In Ireland, a woman qualifies for a termination of pregnancy if there is a real and substantial risk to her life that may be removed only by termination of pregnancy. The process that determines this qualification is cumbersome and complicated, and despite the fact that it relies on clinical judgment delivered in good faith to save a woman's life, it is framed in a criminal context. An error in clinical judgement is potentially punishable by a custodial sentence of 14 years for both the mother and her clinician in the event that an identified risk is deemed not substantial enough. Equally, waiting for a woman to be sufficiently ill in order that she is perceived to be at risk of dying is potentially dangerous. It assumes we can accurately predict the risk of dying. Haemorrhage, infection, heart disease, liver disease and a host of other disorders can make one very ill but they can also kill a person. It is not always possible to predict clinical course with precision. In medicine we deal with probability informed by available clinical evidence and experience.
In women with underlying morbidity, such as cystic fibrosis, portal hypertension, corrected congenital heart disease, renal disease and other conditions, the additional physiological burden of pregnancy can create significant maternal risk. The question arises as to how a substantial risk of mortality is defined. As I have asked, is it a 10% risk of death, an 80% risk of death or a 50% risk of death? A woman would also have a view as to what constitutes a substantial risk to her life and her view deserves consideration. It is not considered currently. This is real-life medicine. We frequently counsel patients about a range of risks and potential outcomes. We arrive at a decision with our patient's input, which we believe is in the best interest of our patient, but I cannot think of any other circumstances in medicine where risks to life are balanced in the shadow of a custodial sentence for both the clinician and the woman.
In my experience, one of the most challenging conditions we experience clinically is the development of chorioamnionitis prior to foetal viability. For example, if the waters around a baby break at around 14 weeks of gestation, there is really little chance the baby would be born alive and survive. We must wait until a woman develops infection or chorioamnionitis before we can intervene in the pregnancy. When the woman is at significant risk of developing such infection, we are tasked with ensuring we can terminate the pregnancy, which has become the source of the infection, before she becomes so ill that she dies.
In pregnancy we deal with two lives inextricably linked by a complex physiology. This is dealt with in the Constitution by a balance of rights. There is the equal right to life of the mother and the foetus. From a medical perspective, this provision creates difficulty in its presumption that the implications of a range of complex medical disorders can be reduced to a matter of individual right. If the legal world explores the balance of rights, the medical world explores the balance of risk. In a pregnancy complicated by serious disease, it is not a question of right but rather a question of risk. Once foetal viability is achieved, we have the option of delivering the baby and attempting to save both lives. We do this all the time in clinical practice and over 2% of babies in Ireland are born before term because of medical indication in the context of foetal or maternal disease. However, prior to foetal viability, we do not have the option of delivering a foetus because the foetus cannot survive, and if a pregnant mother dies, her baby dies too. Therefore, prior to foetal viability, this constitutional provision makes no clinical sense. Its presence facilitates a real possibility that clinical decision-making may be delayed or distorted as clinicians ponder the law rather than medicine.
Unfortunately, there is evidence of this. I will never forget the High Court case that dominated Christmas 2015 when somatic function was maintained in a dead woman so that her foetus could be incubated in what was described as a "macabre experiment". The woman in question was approximately 14 weeks' gestation when she died, which is weeks away from foetal viability. Her father had to apply to the High Court in order to switch off the machines and let his daughter be laid to rest with dignity. The overwhelming clinical judgment in the High Court attested that this foetus would not survive. It was a "futile exercise", according to the High Court, but it happened because of a medico-legal interpretation of the eighth amendment and it could happen again.
In addition to being an obstetrician, I am a specialist in foetal and maternal medicine. The National Maternity Hospital, NMH, is a large tertiary centre for foetal medicine and we are fortunate to have a large multidisciplinary team, including neonatal, midwifery, bereavement, radiology, paediatric, obstetric, genetic, social work and pathology experts to provide guidance and expertise required in the context of complex foetal anomaly. A care pathway has been developed that adopts a multidisciplinary approach to provide individualised care to families. We see women from all over Ireland and we know it is very difficult for families who have to travel long distances for care in the context of foetal anomaly. In 2016, 195 women with a foetal anomaly were referred to our hospital from units around the country.
The specialty of foetal medicine is increasing in complexity, and our ability to identify genetic and structural anomalies in the foetus in utero is increasing. New techniques include the ability to detect chromosomal abnormalities by testing free foetal DNA carried in a mother's bloodstream from as early as ten weeks of gestation. This is done using a simple but expensive maternal blood test. Micro-array technology allows us to examine the chromosomes and see genetic material more clearly and foetal imaging has improved, including enhanced ultrasound and, more recently, magnetic resonance imaging provided at NMH. Interestingly, a third of units in Ireland do not provide routine anomaly scanning, which is hard to justify in 2017. In 2016 at NMH, we identified 400 significant structural anomalies and more than 60 chromosomal anomalies. The diagnosis of a major foetal anomaly and particularly a foetal anomaly in which survival is unlikely after birth is a really difficult part of my job. I know when giving such devastating news that I change a family's life irrevocably. Counselling is always non-directive but includes the variety of options available in each individual case. Even where there is a strong likelihood a foetus will not survive, women wish to continue their pregnancy knowing what will be but they tell me that whether their baby survives for a minute, an hour, a day or a week, the time is of infinite importance. The foetal medicine team and multidisciplinary neonatal teams, in conjunction with our bereavement team, support parents in this context as best we can in each individual circumstance. We now have national standards of bereavement care that address anticipatory bereavement. Strategies include individualised care, memory-making, support and advice for family members, as well as bereavement counselling. Some people call this concept perinatal hospice care.
For some women the decision to continue with a pregnancy can be associated with increased maternal risk. For example, in a case of conjoined twins where separation is not possible because of organ sharing, there are significant technical difficulties in delivering the conjoined babies requiring high-risk caesarean surgery. In the context of a really severe lethal anomaly in which a baby is unlikely to survive, some women will not wish to continue their pregnancy. They will choose to navigate these tragic circumstances in different ways. I understand people will make different choices when faced with really difficult personal circumstances.
Sixty women attending our service travelled to the UK for termination of pregnancy in the context of foetal anomaly in 2016, and to date this year at Holles Street, 43 women have travelled in this context. The majority of women had pregnancies complicated by chromosomal or genetic anomaly, multiple anomalies, anencephaly and ventriculomegaly. UK data indicate that in 2015, 135 women travelled from Ireland to the UK in the context of foetal anomaly where they terminated their pregnancy under clause E, "substantial risk of physical or mental handicap as to be severely handicapped". Women who chose this option must travel to a different jurisdiction. The Constitution protects women who decide to travel but a termination in this country in this context would be a criminal offence.
As an obstetrician I can give limited practical support in this decision. This includes contact details of foetal medicine centres in the UK. We do not make direct referral for pregnancy termination and we certainly do not advocate for one management option over another. Parents must make their own appointments and make their own travel arrangements. Families must find this especially cruel. Parents also bear the cost of treatment in the UK, which can run to more than €1,000, including medical treatment, flights, accommodation, laboratory bills and the cost of bringing their baby's remains home.
In this context, parents frequently report feeling abandoned and the tragedy of their loss is exacerbated by the practical difficulties of bringing their baby home, navigating a different city and jurisdiction, being separated from their families at such a difficult time and the shame and stigma associated with travelling to England for a termination of pregnancy.
From a clinical perspective, care between two different jurisdictions is inevitably disjointed and clinical risk is increased. I am struck by the findings of the UN Human Rights Committee which on several occasions has found that the current criminalisation and restrictive abortion provision in Ireland today violate women's human rights, including the right to freedom from cruel, inhuman or degrading treatment, the right to privacy and the right to freedom from discrimination.
I have raised a number of difficult issues which I have encountered in my medical career. No law will ever adequately address the reality of the ethical dilemmas generated by human reproduction but we have to acknowledge the real risks that women face in clinically complicated pregnancies. I believe there are two main domains that need to be addressed from a clinical perspective. We must address the criminalisation of medical care in Ireland. At present a woman must have a substantial risk of dying before she can qualify for a termination of pregnancy to save her life. Failure to adhere to this is punishable by a 14-year custodial sentence for both the woman and her doctor. I believe this has the capacity to create clinical risk by distorting clinical decision-making.
In September 2017, the council of the Royal College of Obstetricians and Gynaecologists voted strongly in favour of supporting the removal of criminal sanctions associated with abortion in the UK. They said: "We believe that the procedure should be subject to regulatory and professional standards, in line with other medical procedures, rather than criminal sanctions." It is also very difficult that our Constitution protects women to travel in the context of a baby that has a foetal anomaly that is unlikely to survive and yet to terminate a pregnancy at home in this country in this context is a criminal offence.
Second, we must address access to safe clinical care. Women require safe health care and sound clinical decision-making in the context of pregnancy complicated by severe maternal disease. A women herself should have an input into her care management and both she and her doctor must have the flexibility to make sound clinical decisions in good faith. It should not be a requirement that she is dying prior to these decisions being made. Timely appropriate clinical decision-making in pregnancies associated with significant maternal risk will make women safer. Children require special consideration in relation to risk.
In the context of severe foetal abnormality, in terms of access, women are travelling to jurisdictions outside Ireland to access complex medical care. While doctors provide non-directive counselling and can provide information on termination of pregnancy, doctors cannot make appropriate clinical referral. Care delivered between jurisdictions raises all kinds of risk, including lack of continuity of care, inability to access timely care, incomplete evaluation and confirmation of prenatal diagnosis, and incomplete analysis of the implications for future pregnancies. Patients would much prefer to have the option to access this care at home close to their families and friends.
The presence of the eighth amendment in our Constitution creates unacceptable clinical risk and it should be removed.