Professor Fergal Malone:

I am the master of the Rotunda Hospital in Dublin and chairman of the Royal College of Surgeons in Ireland's department of obstetrics and gynaecology. I am a practising consultant obstetrician and a sub-specialist in maternal-foetal medicine. My particular area of expertise is prenatal diagnosis and the treatment of foetal abnormalities. The Rotunda Hospital is the largest provider of prenatal screening and diagnostic services in the State. Patients are referred to the hospital from all other maternity hospitals in the country. Therefore, I may be in a position to assist the committee in providing a factual context in the prenatal management of foetal abnormalities and considering the potential options for change.

I want to clarify that I am not here as an advocate for either a pro-choice or pro-life agenda. As a practising specialist, I understand it is absolutely crucial that patients trust their doctors to be completely objective in their professional medical advice and that they are not perceived in any way to have a political agenda. For this reason, I have always been cautious to keep my personal views out of the public realm. I am here to answer questions of a factual nature that the committee may have on foetal abnormalities and to discuss potential options for change in this area.

In the interests of brevity, I will not provide an overview of foetal abnormalities or prenatal diagnosis in Ireland. In addition, I will keep my descriptions of the care pathways followed by patients in this situation as short as possible. However, these matters are covered in detail in the written position paper I provided for the committee.

Currently, when a patient at the Rotunda Hospital is given a prenatal diagnosis of a fatal foetal abnormality, all options for management are discussed in a non-judgmental manner. The specific diagnosis is explained, together with what exactly is meant by the term "fatal". It includes quoting statistics for the chances of survival to birth and thereafter. There are two options for pregnancy management, the first of which is to continue with the pregnancy and provide perinatal hospice care. This care journey involves regular support from a multidisciplinary team. When the mother delivers, the parents generally hold their baby until such time as he or she passes away. This care journey is very well organised at the Rotunda Hospital and works in a tremendously supportive manner for families in terribly tragic situations.

The alternative option for pregnancy management in this situation is not to continue with the pregnancy, which means undergoing a pregnancy termination. This involves travelling outside the jurisdiction, most often to the United Kingdom. Patients who select this course of action are supported to the extent that is permissible by our legislation. We do not make direct referrals for a pregnancy termination, nor do we advocate for one management option over another. Parents must make their own appointments and travel arrangements. This particular journey is clearly associated with significant additional challenges for patients, including travelling for health care to an unfamiliar city and without family support. There is a significant financial cost of, typically, €800 to €1,500, not including travel costs. Limited autopsy or genetic testing is performed, as the cost of such testing must be paid for separately by the parents. In addition, there is significant distress for parents associated with leaving their baby's remains in a foreign country. In 2016, 55 patients from the Rotunda Hospital travelled to the United Kingdom to undergo a pregnancy termination following a prenatal diagnosis of foetal abnormalities.

The current legislative status of termination of pregnancy in Ireland poses significant practical challenges for obstetricians when faced with a prenatal diagnosis of fatal or complex foetal abnormalities. They include an inability to directly refer patients for care. The Regulation of Information (Services Outside the State for Termination of Pregnancies) Act 1995 prohibits our staff from directly making an appointment for a mother at a hospital outside the jurisdiction. We cannot contact staff in such hospitals directly on behalf of a particular patient but must rely instead on patients relaying potentially complex medical information.

Another challenge is the inability to access care in a timely manner. Recently we have been faced with a number of patients with fatal or complex foetal abnormalities who were unable to secure a timely appointment with a centre in the United Kingdom for a pregnancy termination because that centre had been too busy.

Another challenge is the lack of continuity of care associated with travelling to another jurisdiction. There is a distinct lack of fairness in that patients with complex foetal abnormalities who chose to continue with their pregnancy have prompt access to continuous care within a single health care team, while those who choose not to continue with their pregnancy are forced to endure split care across two jurisdictions, completely undermining the ability to provide for continuity of care. One of the main concerns in splitting care across two jurisdictions is the potential risks to the mother's physical health when travelling. Risks associated with pregnancy termination include infection and haemorrhage which has, tragically, already resulted in the death of one of our patients while travelling to the United Kingdom.

Another challenge is the threat of imprisonment for staff. As prescribed under section 22 of the Protection of Life During Pregnancy Act 2013, a term of imprisonment of up to 14 years may be applied if a doctor is convicted for participation in a procedure to "intentionally destroy unborn human life". There is a lack of clarity among some doctors on whether they may have a vulnerability to such a conviction if they are involved in any way in the management of a patient who has a pregnancy termination in another jurisdiction.

Given these practical challenges facing obstetricians and maternity hospitals in Ireland, I suggest the committee might consider supporting the decriminalisation of pregnancy termination in the setting of foetal abnormalities. Obstetricians and maternity hospitals in Ireland should be able to provide complete health care services for their patients without the threat of a criminal conviction. When faced with the practical reality of caring for mothers with complex foetal abnormalities, it is difficult to justify retaining a threat of criminal conviction for doctors or hospitals providing appropriate health care. Obstetricians and maternity hospitals in Ireland should be able to provide for a legal termination of pregnancy in the setting of fatal or complex foetal abnormalities if a patient chooses to follow that course of action. This would allow both pathways of care to be provided equally to all patients when faced with the traumatic situation of a prenatal diagnosis of complex foetal abnormalities.

With any proposed legislative change, it would not be appropriate to provide a list of specific foetal diagnoses that should be considered "eligible" for a pregnancy termination. Lists of foetal diagnoses are not static over time, just as any list of "eligible" diagnoses today would likely to be outdated in a number of years. Similarly, combinations of foetal abnormalities are commonly seen such that while, individually, a particular abnormality might not be considered "lethal", in combination with multiple complex abnormalities, the overall prognosis would effectively be fatal. It is recommended instead that the individuals best placed to make such a decision are the patient and her doctor, without the direct involvement of external agencies.

We do not consider it appropriate to specify a precise gestational age limit in weeks beyond which a pregnancy termination would be illegal. This is because the definition of foetal viability is not precise and is likely to change. Additionally, foetal size and foetal health are independent predictors of foetal viability, separate from defining viability based solely on gestational age in weeks. Again, it is recommended that the individuals best placed to make such a decision are the patient and her doctor, without an arbitrary legal cut-off.

I endorse the ancillary recommendations of the Citizens' Assembly which call for equal access for all patients to early pregnancy scanning and testing, improved counselling and support services for patients and detailed consideration of how a pregnancy termination should be resourced. Maternity services in Ireland remain significantly under-resourced. If we are to take on board the provision of pregnancy termination services, this will require a significant improvement in resources, both in terms of personnel and physical infrastructure.

I hope my observations, together with the more complete position given to the committee yesterday on the current status of the diagnosis of foetal abnormalities, are of assistance to the committee. I hope, too, that my observations on the practical challenges and options for change will be informative for the committee's future deliberations.