Caring for parents who have experienced the death of a baby is an important role for midwives, student midwives and other members of the multidisciplinary team. In this article Clare Worgan, Sands’ Head of Training and Education, writes about the importance of bereavement care to parents, how training helps healthcare professionals, and how Sands is there to support professionals.
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Midwives, student midwives and the multidisciplinary team are an integral part of many bereaved parents’ birth story, and a huge part of the Sands community. That’s why, this June Sands is launching its new campaign, Together, we are Sands, to talk about the range of different roles people play in our community, help others understand what they can do, and to campaign for change so that midwives can access vital bereavement care training.
The current landscape for baby loss in the UK
It is estimated in the UK that one in four pregnancies end in miscarriage, 5,000 wanted pregnancies are terminated for medical reasons every year, and 13 babies are stillborn or die shortly after birth every day.
Many of these families are supported by highly skilled and compassionate midwives who support them through the most demanding of births. The ability of midwives to be with women and birthing people through their birth, whatever the outcome, has a significant impact on the wellbeing of parents.
“The midwives who cared for us in our darkest time were so kind and compassionate they light to our experience, then and now. Every time someone came into the room just to see him and remark on how beautiful he was made us feel like parents and made us so proud of our boy. All the midwives we met genuinely seemed to care and we could see his death affected them too, their tears were a true blessing, all of this was so important, we weren’t a statistic, we were a family. Our time making memories with him was so beautiful, peaceful, and vital.
“Being able to leave hospital with him cradled in the arms of a midwife who cared and had spent time with us made the hardest, worst thing I have ever had to find the strength to do manageable. I look back on his birth and our time in the bereavement suite and I don’t just remember sadness, I remember real love, compassion, care, and our parenthood being recognised – I feel lucky to have had such wonderful, well-trained midwives.” Jo, Ori’s mum
However, over recent months we have heard heart-breaking stories from bereaved families who didn’t receive the care and support they should have. Donna Ockenden noted the devastating effect lack of compassion had on a whole community in her report into failings in maternity care at Shrewsbury and Telford Hospitals NHS Trust. The Immediate and Essential Actions in the report highlight that staff “should have been trained in dealing with bereavement” and be able to deliver “Compassionate, individualised, high quality bereavement care… for all families who have experienced a perinatal loss.”
What this means for providing bereavement care
Everyone who experiences the death of their baby is unique and will grieve in their own way, which can make bereavement care particularly challenging even for the most experienced of midwives. The way someone grieves for their baby will very much depend on the circumstances of their loss and their personal situation. A parent’s beliefs, their physical and mental health, their personality, their culture/community, their relationship to their baby and the support they receive from others will all influence how they experience their loss and what maternity care they require.
Bereavement midwives work across the UK providing essential services for bereaved parents, these specialists have the experience and clinical skills to support families and colleagues when a baby dies. However, it is essential for the sake of families, that all midwives understand the key principles of psychologically safe bereavement care and that they are properly supported to provide it. The role of the midwife supporting any bereaved parent is firstly to listen; to understand their perspective and their needs, and then to support and empower parents to make the decisions that are right for them.
Five principles of bereavement care
- Recognising parenthood
Motherhood and fatherhood don’t depend on a child being alive. Bereaved parents feel the same love and pride in their baby as any other new parent; these emotions are, of course, mixed with extreme sadness and trauma therefore compassion and sensitive language are essential. Using words or actions that acknowledge parenthood can be comforting grieving parents.
- Sensitive communication
Language matters and words have power, so it is natural to worry about saying the wrong thing when a baby dies, especially when working with parents who are going through a traumatic, life-changing event. Bereavement care training helps build confidence in finding the right words. Whether you are discussing medical care, birth options or memory making, the key is to remember those you are speaking to are probably in trauma or shock and may have difficulty processing what you are saying, always be honest, gentle, and kind.
- Compassion and empathy
For parents, the death of a baby is a human experience, not a medical outcome, so it requires a human response. Empathy is the ability to see an experience from their perspective, not your own, recognise emotion in another person and communicating that emotion. The qualities of empathy can be learnt through bereavement care training and experience but it’s essential to start with compassion. The phrase “I’m sorry this has happened to you” is the compassionate response to this devastating experience.
- Enabling informed choice
There are many options available to bereaved parents when their baby dies, from donating milk and memory making to funerals and post-mortems. Midwives need to know what options are available in their local area so that they can offer informed choice however with options come with decisions, and it’s certainly not easy to make decisions when in the depth of grief. Supportive informed conversations are an essential part of bereavement care, these conversations are often emotional, and confidence comes with experience but the skills to navigate these can be learnt through bereavement care training.
- Staff wellbeing
The death of a baby can be personally and professionally challenging for all involved including midwives so it’s vital that staff wellbeing is prioritised. Only when staff are supported can they effectively support families. It is important for midwives to pay attention to their own wellbeing and reach out for support when needed. Sands is here to support anyone affected by pregnancy loss and baby death, including midwives. Our helpline is available to speak to someone in confidence about any aspect of baby loss or support.
Bereavement care training should be available to all staff who need it
Many healthcare professionals tell us they feel daunted by the prospect of working with parents when their baby dies, which is understandable because the evidence shows midwives across the UK do not have enough access to bereavement care training to adequately equip them with the confidence and skills they need.
In Spring 2022, Sands conducted a survey to understand what is happening in bereavement care following pregnancy loss or the death of a baby in NHS trusts and boards across the UK. We found that too often midwives do not have good access to bereavement care training and when they do most of them have to attend it their own time. Less than half (49%) of trusts and boards told us that bereavement care training was available to staff across the range of healthcare professionals who come in to contact with families experiencing pregnancy loss or the death of a baby. Only 12% told us time is given in working hours to attend. Bereavement care training is most accessible to midwives, with just over three quarters (77%) of trusts and boards telling us it is available to this group. However, only 47% reported it was mandatory for this group, and only a third that time is given in working hours to attend it, which means in most trusts and boards midwives must attend the training in their own time – some of them even when the training is mandatory.
Campaigning for change: giving midwives access to bereavement care training
This is why we are calling for bereavement care training to be provided to all staff who come into contact with bereaved parents, and staff are supported by their trust/board to access this training, during working hours.
The Sands Training website has a range of learning opportunities for midwives and students. Free open-access webinars are hosted live online every month, as well as more bespoke in-house training delivered either online or face to face. Sands training helps develop an understanding of the needs of bereaved parents and gives participants the opportunity to develop vital communication skills, so that they are equipped to work with parents from the first, traumatic moments of loss and into their next pregnancy.
In addition to training, the National Bereavement Care Pathway (NBCP) is there to help midwives and the multidisciplinary team provide the best possible care. The NBCP which is currently being rolled out in England and piloted in Scotland, clearly sets out what good bereavement care should look like. There are five pathways, one for each experience of loss, Miscarriage, Termination for Fatal Anomaly, Stillbirth, Neonatal Death and Sudden and Unexpected Death of an Infant. The advice to midwives is to become familiar with these pathways, there are two eLearning modules to help with this, available via the eLearning for health website.
Together, we are Sands
This June, Sands wants to bring people closer together. To thank those that are already with us as part of our community, and to help others know they have an important role to play.
We are the bereaved families who have lost much-loved babies. We are the volunteers, befrienders and staff who provide support and make sure no one faces baby loss alone. We are the healthcare professionals working on the frontline to care for parents. And we are the fundraisers and campaigners who share a vision for a world where fewer babies die.
If you’d like to learn more about the campaign and how you can get involved, visit sands.org.uk/we-are-sands
Get involved and talk to us on Twitter using @SandsInsights
Sands is here to support you, too
Our bereavement support team is here for anyone affected by the death of a baby, including healthcare professionals. We’re here to talk in whatever way works for you – including telephone, email, or online. Our GriefChat service is also available should you need to access free support from a counsellor. Visit sands.org.uk/support to find out more.
Clare Worgan, Sands’ Head of Training and Education
June 2022