Share the care
advocating for end of life care that sees the whole story
12th - 16th May 2025
Monday | Keep the care balance
A pregnant or recently pregnant cancer patient, approaching end of life, stands in the middle of a metaphorical see-saw.
On one side is all the medical care and intervention they will need to manage the end of their life as comfortably as possible. On the other, all the responsibilities and expectations of a young family, including the desperate desire to just be a mum, doing mum things, and being with her loved ones as much as she can.
HCPs: How can you help to keep the balance between these important but sometimes conflicting necessities?
"It is important to remember that behind every statistic...
there is an individual with friends, family and a community."
MBRRACE-UK has some suggestions in their October 2024 report on maternal deaths in the UK.
They highlight the importance of facilitating time spent with baby, providing psychological support to help mum come to terms with the terminal nature of her illness and prioritising co-ordinated, multidisciplinary care with mum's needs and voice firmly at the centre.
Read their introduction to this campaign for more insights.
Key resources
NHS England service specifications for palliative and end of life care: Adults provides the adult service model for delivering specialist level palliative care (SPLC) services from identification of need through to end of life.
The NICE guideline [NG142] End of life care for adults: service delivery 2019 covers organising and delivering end of life care services and the planning and preparation needed.
Tuesday | Hear mum's voice
This powerful video tells the story of a young mum diagnosed with cancer in pregnancy who sadly dies ten days after giving birth, from the perspective of three of her care team:
Dr Kate Navaratnam - Consultant in Maternal-Fetal Medicine
Jo Kennedy - Critical Care & Outreach Midwife
and Dr Emma McGoldrick - Consultant Obstetrician
all members of the North West Maternal Medicine Network
"mum is our first priority, but we understand that the first priority of the mum is usually the baby."
Facing the reality of a life limiting illness while pregnant or recently pregnant is a unique and deeply challenging experience that only a small number of patients go through.
Mum is facing immense uncertainty and her medical team may be too, especially if they've never supported someone in this situation.
HCPs: How do you reassure mum that her fears and concerns are valid and that her needs and preferences will be considered and met as much as possible?
As with any patient, we encourage you to place mum's voice at the heart of her care plan. Conversations can be difficult and emotionally draining, but they are vital. Knowing she is being heard can give mum a sense of relief and allow her to approach death with less stress and anxiety.
Advance care planning can be useful. This voluntary conversation between the patient and their care providers should include preferences and priorities for future care, and also the support her family may require both before and after death. It will likely involve a number of conversations and these should continue over time, to allow for her feelings or needs to change.
It is important to remember that not every mum will want to go through this advance care planning process immediately, or sometimes at all. It may take time for her to adjust to this new reality. She may also need to set other elements in place first, such as ways her family will be cared for after her death, before she can begin to think about herself.
Have patience and above all be respectful of mum’s wishes and priorities, while also being prepared to offer support and planning facilitation at any time, should she be ready.
Key resources
Advance Care Planning guidance from Marie Curie
Advance Care Planning guidance from Compassion in Dying
Rethinking the UK’s approach to dying; a report from Compassion in Dying
The NICE guideline [NG197] Shared decision making 2021 covers how to involve shared decision making in all aspects of care. It promotes ways for healthcare professionals and patients to work together to make decisions about treatment and care.
Wednesday | See patient, think parent
This conversation with Kate Wells, Family Support Service Lead at the
Ruth Strauss Foundation highlights the importance of preserving identity, dignity and autonomy in end-of-life care and how 'thinking parent' can help to keep the balance between medical and holistic, emotional needs.
The emotional and practical experience of approaching end if life is infinitely more complex for a parent with young children. Their fears, sadness, anger and grief are all unavoidably heightened by the impact on their dependents.
Mum may become overwhelmed by her own emotions and distance herself from others. She may feel unable to share the depths of her fears and feelings with anyone close to her and may not want to prioitise her medical care if it is taking up precious time with her family. She may also be preoccupied with her family’s support after her death and may feel unable to even consider her own needs until she is certain that her family are being taken care of.
"Parenting is not just a nice thing to have…it’s essential!"
Ensuring practical and emotional support for her partner and family can give Mum the reassurance she needs to prioritise her own care and to approach death with less anxiety and fear.
A big part of this having difficult conversations with her children around the reality of her condition and eventual death. It's important that these talks are honest, open, age-appropriate and child led and healthcare professionals on Mum's MDT have a responsibility to ensure that she has support in navigating them.
There are many fantastic organisations and supportive resources available, including Fruitfly Collective and the Ruth Strauss Foundation; who offer training and resources for parents and professionals alike.
This conversation with Caroline Leek, founder and Director of
Fruitfly Collective and the Parenting With Cancer programme highlights tools and techniques for approaching and having difficult conversations with children whose parents are dying from cancer.
It's also important to find places and opportunities for Mum to spend as much time with her children and family as possible. Hospices are a fantastic community resource and staff are often well-practised in making family of all ages feel welcome.
Every hospice is unique and each will have its specialism, so it's important for MDTs and healthcare professionals to keep up to date with their local hospices and the services they offer. Referring a patient with a young family to a hospice sooner rather than later can provide more opportunities for Mum to be a parent, without having to also be a patient, before she sadly dies.
Louise Johnson, Community Outreach Manager at St Cuthbert’s Hospice, has written an article sharing valuable insights into providing families with advanced planning and support with practicalities when the mum or birthing parent is approaching end of life. She also explores the incredible impact that hospices can have on their community and in the lives of parents with young families who are approaching end of life. Read it here.
Key resources
“Supporting families when a parent is dying is about more than just medical care. It’s about preserving dignity, enabling choices, and creating space for memories, legacy, and love.”
Webinars and training courses for healthcare professionals - FruitFly Collective
No Conversation Too Tough - training course for healthcare professionals - Ruth Strauss Foundation
The Talking, Telling, Sharing Framework - excellent evidence-based resource to help communicate with children when their parent is at the end of their life. - Family-Centred Cancer Care Conversations. Ulster University. C. Semple et al. More resources from them here.
Family life roadmap when parent is at end of life from cancer - Family-Centred Cancer Care Conversations. Ulster University
Everything in Place - in person or online programme designed to get people talking about physical, emotional, spiritual aspects of their death, alongside practical issues like care plans and wills. - St Cuthbert's Hospice
Toolkits and resources for parents and families, when a parent has cancer - Fruitfly Collective
Parenting With Cancer coaching programme - for parents with cancer and their partners/co-parents - Fruitfly Collective
Thursday | Joy and the Care Bubble
“Collaboration across specialists with the woman’s needs at the centre and one person coordinating her care are needed for optimal end-of-life planning.” MBBRACE-UK, 2024 report
Healthcare professionals have the vital role of ensuring mum is medically supported when approaching end of life. This takes incredible effort and focus and, understandably, can take priority over other holistic needs.
That's why we encourage Multi-Disciplinary Teams, Maternal Medicine Networks and any other professionals providing medical care to build a care bubble
that includes professionals and experts from other disciplines and specialisms into your care team.
As the only charity dedicated to supporting people diagnosed with cancer in or around pregnancy,
Mummy's Star can be the hub that connects you to a wide variety of charities and organisations that can assist in providing holistic care and support to your patients.
We also encourage you to do your own research; to find out what local services may be available in your area and to familiarise yourself with what they could offer your patients and their referral processes.
"You can still get those little pockets of joy that nobody can take those away from you."
This conversation with Kirsty Aked, founder of the Chris Aked Foundation explores real life experiences of losing your partner and parent to your baby to cancer, and highlights the importance of memory making and supporting children when a parent is approaching end of life.
When a pregnant or recently pregnant parent is approaching end of life, there must be time and space dedicated to supporting their children and facilitating time spent with their children.
They are likely to be Mum's top priority and ensuring that she can deepen her bond and connection with them - both in life and after death - is a vital part of meeting her emotional needs.
Memory making can be a relief from the brutality of an end of life prognosis; it can create a bank of memories for the children that will help them create a strong, clear narrative of who their mother was; above all it is an opportunity for joy at a time of grief and sadness.
Collaboration is key. We advocate strongly for the breaking down of barriers – whether they be geographical, organisational or professional – and the coming together of disciplines to create a vibrant bubble of meticulous, caring, personalised support for every mum and family faced with this terrible reality.
Key resources
Counselling and memory making days from
the Chris Aked Foundation
Working differently together: Progressing a one workforce approach Multidisciplinary Team Toolkit by Lucy Dodkin, Health Education England
What is a Maternal Medicine Network? from
the North West Maternal Medicine Network
Friday | Patient. Person. Parent
"New National Recommendation:
Update end-of-life care guidance to include recommendations for the appropriate service delivery to pregnant or recently pregnant women including the need to recognise decline, facilitate time spent with their baby and hold conversations around provision of consent for advanced resuscitation
[ACTION: National Institute for Health and Care Excellence]"
~ MBRRACE-UK report 2024
We wholeheartedly support MBRRACE’s call for NICE to create specific, dedicated guidance for pregnant and recently pregnant patients parents who are approaching end of life. These parents aren’t just patients, they are mums, partners, and caregivers, and that distinction matters.
Clinical care alone is not enough. We need guidance that supports the whole person and their family: emotionally, holistically, and practically.
This week, voices from across the charity sector have reinforced what we hear every day: when a parent is dying, their greatest concern is often their children. Supporting the wider family, particularly emotionally and practically, can bring enormous relief and reduce the stress and fear surrounding death.
Memory-making and helping parents feel like "mum" again, even briefly, can have a powerful impact. Making space for this isn’t just compassionate, it’s therapeutic. Earlier referrals to hospice care can be key here.
Hospices can play an invaluable role in supporting not just the patient, but their whole family, throughout the
end-of-life journey, not just in the final days.
We also urge healthcare professionals to engage in meaningful signposting. Not just offering a leaflet or a link, but truly connecting families with the right support.
Too often, parents are left wading through services that don’t fit their needs or situation; this can be disheartening and wastes precious time. Knowing what family-specific support exists, both locally and nationally, and how to refer to it is essential. Being prepared to guide families through these options, not just hand over a leaflet, makes a real difference.
A truly supportive approach means MDTs working in collaboration across disciplines, with mum’s voice and wishes at the centre. This is where we see care that upholds dignity, autonomy, and peace at the end of life.
Healthcare professionals are vital to making this kind of care a reality. By advocating for early referrals, building awareness of family-focused support, and championing integrated care that is truly person- and parent-focused, you can help ensure that no mum faces this journey without the support they deserve.
find out more
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We've compiled all the highlights and key takeaways from the campaign into a helpful resource. Perfect for any healthcare professional or service provider who might care for a pregnant or recently pregnant person approaching end of life.
Includes:
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introduction from MBRRACE-UK
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cancer and pregnancy insights from Mummy's Star Support Team
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key takeaways and links to video conversations with experts who provide holistic end of life/palliative support and information, including Marie Curie, Ruth Strauss Foundation and St Cuthbert's Hospice.
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real life insights on providing simultaneous maternal and end of life care from North West Maternal Medicine Network
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list of key organisations providing holistic end of life/palliative support for patients and their family.
Download it now to increase your knowledge, improve care and connect with a valuable network of supportive organisations and services who can help you meet all your patients' needs.
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Together we will build a compassionate community so no family walks this path alone.
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Book one of our bespoke Cancer & Pregnancy training sessions for more case studies and in-depth insights into lived experience of cancer diagnosed in or around pregnancy and its intersection with maternity and MDT care.
Find out more about the specific, one-to-one support we can provide to mums and birthing parents diagnosed with cancer during or within 12 months of a pregnancy or related baby loss, and how to refer your patients to us.