Hospice midwives have spoken to Nursing Times about their unique role and why they think there should be more of them.
Based in palliative care settings, these specialist midwives’ first involvement with parents will usually begin with a referral from a hospital, if the unborn baby is diagnosed with a life-limiting or terminal condition.
“There’s not many professionals who can do the whole pathway of diagnosis to when baby dies”
Catherine Randall
They will then help parents navigate the complications of this pregnancy, using their expertise in maternity and palliative care to give them as “normal” a pregnancy as possible, and then supporting them through end-of-life care pathways after the baby is born.
The midwives also help educate patients and families on care choices and symptom management. They can be involved with parents who choose to end the pregnancy early, as well as providing bereavement support for the families of babies who die shortly after birth.
The role itself is rather unique. According to North London-based Noah’s Ark Children’s Hospice, there are fewer than five dedicated hospice midwives in the UK.
Jen Burnham, hospice midwife at Noah’s Ark, started in her then-newly created role in 2023.
She said she worked as an addition, rather than a replacement, to other perinatal practitioners.
“I can do antenatal checks, postnatal checks… [but] I don’t want to interfere in the regular care they’re getting at hospital,” she said.
Ms Burnham explained that a big focus of her role was the emotional and pastoral aspects of care.
“The biggest things [for the parents] are feelings and emotions, shock, fear, anger… We can’t take them away, but we can be there for those families to listen,” she said.
“We can be the person to take the anger, be shouted at or whatever. They might not want to speak to their friends and families.”
Jen Burnham
She also plays a key role in clarifying processes and helping families navigate through what could be a complex time.
Ms Burnham added: “If, during your appointments, there’s an anomaly found, then you’ll have additional appointments, scans, tests. That’s a lot of information for people to take in when they’ve got so much going on in their minds.”
Ms Burnham will look after families with babies up until one year old. For the parents of babies who die shortly after birth, she may help create mementoes of the child, aid in the arrangement of funerals and contact registry offices to report a death.
She said that, in her view, having an assigned hospice midwife helped with the continuity of care for families.
“If I can get involved in the pregnancy and be involved throughout… it would massively support that family,” she said. “They’d have that trust, they wouldn’t have to meet new people.”
Ms Burnham said she was surprised, when she started at Noah’s Ark, that her role was rare. She hoped that more hospices would follow suit, and that knowledge of the specialism could be spread to hospitals so they knew the resource was available.
Derian House Children’s Hospice, in Lancashire, also recently hired its first dedicated midwife. Maria Williamson, with more than 30 years of midwifery experience in the NHS, took on the post in October 2024.
“If I can get involved in the pregnancy and be involved throughout… it would massively support that family”
Jen Burnham
She previously worked in foetal medicine at Burnley General Teaching Hospital, part of East Lancashire Hospitals NHS Trust. In this hospital-based role, Ms Williamson saw, firsthand, the specific challenges facing expectant mothers whose unborn child had been diagnosed with a life-limiting condition and the gaps in their care.
“That is where my passion came from,” she said. “I could see there was maybe a little bridge that could be made.”
Ms Williamson said her career change came with obstacles, in part due to the unique nature of the position, but also upsides such as a greater amount of time with each patient.
“[Before], I worked on a very busy antenatal clinic where time was of the essence,” she said.
Hospice midwife Maria Williamson practises with a dummy baby
“Now, I have been given the grace of time, I’m given that time to be able to really sit down with these parents and talk to them about how they feel, what they want.”
She further explained that hospice midwives could reduce the number of times a family had to attend hospital, which can be a stressful experience: “Once anything is diagnosed, from testing and looking at the condition, families spend a lot of time going up and down to different appointments, specialist tertiary centres, hospital appointments.”
Ms Williamson said that the focus on the life-limiting condition sometimes caused the fundamentals of perinatal care to fall by the wayside.
“A lot of the time… some of the normal things won’t be offered. I think that is nobody’s fault, it’s just that they’re all over the place,” she said.
She hoped to become a useful resource for hospital-based midwives in the three integrated care boards Derian House covers to improve care for parents in this situation.
“I feel like I can be a support to those midwives to empower them to be able to talk about things like vaccinations in pregnancy, antenatal hand expressing and colostrum,” she said.
“Sometimes it doesn’t always get mentioned, because maybe people are worried or frightened, because potentially the baby might die. But if the baby doesn’t die, then the parents have done all of the things that anybody else would have done.”
She described her role as being in its “infancy”, but that she hoped to develop it to being a “bridge” between hospital midwives and palliative care services, as well as directly looking after patients.
The reaction to her role so far had been positive, said Ms Williamson.
“Up to now, I think I’ve supported eight women – obviously you don’t want the numbers to be huge… we’ve had some brilliant feedback,” she said.
“One woman said she felt like she’d had the time [she needed], that she wasn’t being judged about anything, [and] that she had actually never thought about being allowed to enjoy a pregnancy, because it was so complex.”
Ms Williamson said she had wanted to move into hospice care for several years, and that she was excited to be on the frontiers of clinical practice, developing what is a relatively uncommon and new role.
“I’m given that time to be able to really sit down with these parents and talk to them about how they feel, what they want”
Maria Williamson
She added: “This is a role that will carry forwards for years to come. As we know, more parents are continuing with pregnancies when they have babies with life-limiting, life-shortening conditions, and so it is becoming so important.
“It’s a frightening time for [parents]. You mention the word hospice and they shrink into a corner. It’s sort of like, ‘I don’t want to think about that’. But now we can invite them in, they can see, we can help dispel that fear, meet the wider team and really get that support behind them.”
Ms Williamson said the addition of hospice midwifery into the mix meant families, and babies, got more “holistic” care.
Catherine Randall, chief nurse at Derian House and a former midwife, was instrumental in creating the role at her hospice.
Maria Williamson (front left) and Catherine Randall (back right) with the nursing team at Derian House
The hospice cares for people aged 0-26 and Professor Randall said it was doing a lot around transitional care for older children moving into adult services. The hospice midwife role came out of a desire to do more for families at the very start of their journeys, she explained.
“Some of our children… their life-limiting conditions are often diagnosed during pregnancy, so we have an opportunity to support our families before baby is born,” said Professor Randall.
The impact of the new role, Professor Randall said, has already been felt.
“There’s not many professionals who can do the whole pathway of diagnosis to when baby dies,” she added.
Professor Randall said she would like to see hospice midwifery expanded, but conceded that resources would be the limiting factor.
An ongoing financial crisis in the mostly charity-funded sector, which is facing a national deficit in the tens of millions, could prevent role expansion in some settings.
“We have only a small sliver paid by the government, the rest of it is through our amazing public and volunteers,” she added.
“The life journey often begins before birth, so… it will be the right thing to do, if we can, to not just come in at day zero, to come in before.”
