Continuing our special series on perinatal bereavement and palliative care with examples of initiatives from Ireland and France that aim to improve care for babies and families.
Brid Shine, Clinical Midwife Specialist, Bereavement and Loss, Coombe Women & Infants University Hospital, Dublin, Ireland, explains how a perinatal palliative care team can help to structure a holistic care approach for families facing end-of-life issues in maternity hospitals.
Maternity hospitals are considered by the general public to be places associated with joy, celebration and happiness. And while this is true for the most part, death, dying and bereavement are important areas of care provided by maternity hospital staff.
The response to perinatal loss has undergone a revolution in the last few decades. Before the 1970s, medical or psychological literature did not reflect the distress and grief experienced by bereaved parents. The nature of perinatal loss is that it is often sudden and unexpected resulting in tremendous sadness for parents and families. The grief associated with this type of loss is referred to as ‘Prospective grief’, whereby bereaved parents grieve for all the lost hopes and dreams they had held for their unborn child. Many studies now indicate that perinatal death is a major bereavement, with some parents at risk of experiencing a complicated grief.
The development of perinatal palliative care (PPC) has been helpful in structuring a holistic care approach for families facing end-of-life issues in maternity hospitals. PPC involves the active and total care of the baby in utero, neonatal period and/or into infancy. Families who are told antenatally that their baby has a life-limiting condition require a comprehensive PPC team that can support them from the time of diagnosis to planning for their baby’s birth, short life, inevitable death and bereavement. It is an approach also used in caring for sudden unexpected loss, and it includes care for the baby, the parents, siblings and wider family.
The ongoing bond that bereaved parents maintain with their deceased baby became evident to me from a decade of working with older people as they approached the end of life, and perhaps led me into the specialist area of perinatal bereavement care. Our care practices in Ireland have been greatly enhanced by contemporary research that affirms the ‘Continuing Bonds’ philosophy. Memory making, facilitating parents to view, hold, spend time with their baby and create memorabilia are all evidence-based practices employed for many years now in Ireland’s maternity units. Staff who are involved in these parents’ lives become part of the narrative that parents create and treasure. We have many examples of creative expression gifted to us by parents in memory of their baby’s short life, from music to artwork to poetry and it is clear that sometimes there are no words to express the profound loss experienced in the death of a baby.
My role as the bereavement midwife is to journey with parents and, in time, to support them to find meaning in their loss. The voices of bereaved parents in Ireland were influential in changing care practices, and they continue to be heard as they help us to shape perinatal palliative care into the future. Each day we are privileged to bear witness to the human stories of love and loss that change worlds forever.
Please feel welcome to comment below or to contact me by email.
To find out more . . .
Klass, D. (1996) Continuing Bonds: New Understandings of Grief. New York: Taylor and Francis Inc.
Worden, W (2001) Grief Counselling and Grief Therapy. London, Tavistock Publications 4th Edition.
Shear, K.M. (2006) The treatment of Complicated Grief. The Australian Journal of Grief & Bereavement, 9 (2): 39-42.
For a parent on the death of a child by John O’Donoghue (a poem).
Irish Hospice Foundation Maternity and Neonatal group (a national network for healthcare staff who work in the area of pregnancy loss and infant death).
Two Irish voluntary organisations that offer support and information to bereaved parents and others affected by the death of a baby during or after pregnancy: Féileacáin and A Little Lifetime Foundation.
Coming up on the EAPC Blog . . .
We shall be publishing a post each week in the perinatal bereavement and palliative care series. Next week we hear from Tyrone Horne, a Children’s Outreach Nurse for life-limiting conditions at Cork University Hospital in Ireland. If you missed last week’s post please click here.
It’s so reassuring to see this taken seriously. Thank you.
Yes it is both timely and human to turn towards bereavement care in maternity services with new eyes. Maternity care staff have become more knowledgeable as well as more compassionate in their care of grieving families.
Direct feedback from parents and current research have begun to pave the way for a more holistic approach to what was once treated as a medical event only.
It looks like you are further along the way than your NHS counterparts. There’s been a big push to have more consistency in services but a notable silence around longer term provision of mental health support for bereaved parents. That’s why I’m so pleased to see work like this going on. It makes such a difference.