Perinatal bereavement care – building the body of research in Ireland

Today, we launch a special series about perinatal bereavement and palliative care with examples of initiatives from Ireland and France that aim to improve care for babies and families.

Grace O’Sullivan, Hospice Friendly Hospitals Programme Coordinator, Irish Hospice Foundation, explains how national policy has strengthened the development of a palliative care approach for women, babies and families experiencing loss and grief in Ireland.

Grace O’ Sullivan, Hospice Friendly Hospitals Programme Coordinator, Irish Hospice Foundation

When the Irish State was founded almost 100 years ago, the average life expectancy for women was 54 years and the infant mortality was 81 deaths (per 1,000 born). Now, in 2016, women in Ireland live well into their eighties and the infant mortality rate has fallen to 3.7 deaths (per 1,000 births).

Sadly, however, approximately 400 infants and children die each year in Ireland, primarily due to life-limiting conditions. Also, on average 300 babies are stillborn and 14,000 women in Ireland experience miscarriage each year. Since the commencement of the Protection of Life During Pregnancy Act on 1st of January 2014, 26 terminations of pregnancy have been carried out in Ireland.

Almost half of all the children who die in Ireland will die in the first year of their life.

More specifically, 40% of all children who die in Ireland die within the first week of life.

For example, in 2013, there were 162 early neonatal deaths (within seven days of birth) and 37 late neonatal deaths (after the seventh and within 28 days of birth). As part of the growing recognition of the role maternity services play in bereavement care, Ireland’s Health Service Executive will soon publish an important set of national standards, Bereavement Care Following Pregnancy Loss and Perinatal Death. The aim of the standards is to strengthen and guide the development of a palliative care approach for women, babies and families experiencing loss and grief in Ireland’s maternity services.

The forthcoming bereavement care standards will guide service development in Ireland’s 19 maternity units and will build upon existing best practice and policy such as, Palliative Care for Children With Life-Limiting conditions in Ireland; a national policy. Since 2010, the implementation of this policy has transformed how palliative care services are delivered to the estimated 3,840 infants and children in the Republic of Ireland living with a life-limiting condition. It’s estimated there are 1,300 children living with a life-shortening illness in Northern Ireland. Click here to read the recent statement from Together for Short Lives UK and Northern Ireland Children’s Hospice.

The body of Irish research about bereavement, pregnancy loss, perinatal palliative care and children’s palliative care is growing.

Links and resources

• 2nd International Children’s Palliative Care Conference: Building Bridges – Home, Hospital and Hospice. An Interdisciplinary Conference. 22-23 April 2016, Dublin, Ireland.
• Ireland’s National Perinatal Epidemiology Centre at University College Cork
• The Palliative Hub (for parents and professionals) developed by the All Ireland Institute for Hospice and Palliative Care
• Creating a Better Future Together. National Maternity Strategy 2016-2020 published by Ireland’s Department of Health
• Ireland’s Central Statistics Office cso.ie
• The Maternity & Neonatal Hospice Friendly Hospitals Network coordinated by the Irish Hospice Foundation.
• @graceos101

Coming up on the EAPC Blog . . .
We’ll be publishing a post each week in the perinatal bereavement series. Next week we hear from Brid Shine, a Clinical Midwife Specialist in Bereavement and Loss.