We face the reality every day —we know why change is needed
Dr Rhona Mahony and Prof Fergal Malone make the clinical case for a change to the laws surrounding termination of pregnancy in Ireland
IN considering the clinical impact of the Eighth Amendment, it is important to define and understand what is meant by termination of pregnancy, defined as the “intentional procurement of miscarriage prior to foetal viability”. Foetal viability is approached at approximately 24 weeks of gestation when sophisticated neonatal intensive care provides an approximate 50pc chance of foetal survival. Other factors also impact on the prospect of foetal viability, such as foetal size and the presence of foetal abnormalities. A baby who is born after viability has been reached and intensive care provided is defined as a delivery.
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 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 in which an error may be punishable by a custodial sentence of up to 14 years for both the mother and her doctor.
In pregnant women with additional serious medical problems, such as cystic fibrosis or congenital heart disease, the added physiological burden of pregnancy can create significant maternal risk. It must be recognised that it is clinically difficult, if not impossible at times, to distinguish with certainty the difference between risk to health and risk to life. This is real-life medicine, but there is arguably no other circumstance in medicine where such risks to life are balanced in the shadow of criminality. The critical question arises as to how a substantial risk of mortality is defined. Is it a 10pc risk of death or an 80pc risk of death, or a requirement for intensive-care support? A woman will have a view as to what constitutes a substantial risk to her life, and her view deserves consideration.
In pregnancy, we deal with two lives inextricably linked by a complex physiology. This is dealt with in our Constitution by a balance of rights — the equal right to life of the mother and the foetus.
From a medical perspec- tive, this provision creates difficulty in its presumption that the implications of a range of complex medical disorders can be reduced to a matter of right and quantifiable risk. Once foetal viability is achieved, we have the option of delivering the baby and attempting to save both lives. 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, but its presence facilitates a real possibility that clinical decision-making may be delayed or distorted as clinicians ponder the law rather than medicine.
Unfortunately, approximately 2pc-3pc of all foetuses have a significant congenital abnormality. The specialty of foetal medicine is advancing in complexity and our ability to identify genetic and structural abnormalities in the foetus is increasing.
Foetal imaging has also improved, including enhanced ultrasound and MRI imaging. A scan performed at 18 to 22 weeks’ gestation to detect foetal abnormalities is a standard of care, but one-third of units in Ireland do not provide this basic service, which is hard to justify in 2017.
The identification of a foetal abnormality before birth allows parents and medical teams an opportunity to prepare for birth and to optimise outcome where possible. However, in some cases an abnormality is so complex that a baby may die in utero or shortly after birth.
The realisation that a baby has a complex severe foetal abnormality is devastating for families. When a patient is given such a prenatal diagnosis, non-directive counselling is provided. This means that all options for management are discussed in a non-judgmental manner. One option for pregnancy management is to continue with the pregnancy and to provide perinatal hospice care. There are now national standards of bereavement care that address anticipatory bereavement with strategies including an individualised multi-disciplinary approach, memory making, bereavement support and advice for family members.
The alternative option in this situation is to not continue with the pregnancy, which means undergoing pregnancy termination outside of this jurisdiction. Patients who select this care pathway, after non-directive counselling, are supported to the extent that is permissible by our legislation. This includes providing contact details of foetal medicine centres in the UK. We do not make direct referral for pregnancy termination or advocate for one management option over another. Parents must make their own appointments and make their own travel arrangements. Parents also bear the cost of treatment in the UK, which can run to several thousand euro, including medical treatment, flights, accommodation, laboratory bills and the cost of bringing their baby’s remains home.
More than 100 women attending our hospitals travelled to the UK for termination of pregnancy in the context of foetal abnormality in 2016. Parents frequently report feeling abandoned, and the tragedy of their loss is exacerbated by the practical difficulties of bringing foetal remains home, navigating a different healthcare system, being separated from their families at such a difficult time and the shame and stigma associated with travelling to the UK for termination of pregnancy.
From a clinical perspective, care between two different jurisdictions is inevitably disjointed and clinical risk is increased. It is far from an ideal that a complex medical diagnosis is made in one jurisdiction while treatment is provided in another without the capacity to make a formal appropriate clinical handover. Lack of continuity of care, incomplete evaluation of prenatal diagnosis and incomplete analysis of implications for future pregnancies are further hazards. We have direct experience of our patients having suffered severe complications while travelling for these purposes.
We believe that the issue of criminalisation of medical care relating to termination of pregnancy in the setting of foetal abnormality and maternal illness needs to be changed.
Secondly, we believe that doctors and hospitals in Ireland should be allowed to provide all pathways of care for our patients when a diagnosis of a complex foetal abnormality is made, without having to export our challenging cases to another jurisdiction to complete care.
We make these observations as clinicians facing real-life clinical challenges and as witnesses to the very difficult and complex clinical situations faced by our patients.
‘We have direct experience of patients having suffered’