Palliative care can be provided by specialist neonatal teams in the neonatal unit, or alongside specialist palliative care teams who will come to meet you and your baby on the neonatal unit. These specialists will sit down with you and discuss your wishes for your baby, and what you would like to happen should different scenarios happen. For baby's who are expected to survive beyond the neonatal unit, this may include discussions around on-going specialist care. It may also include discussions around what to do if your baby suddenly becomes very unwell, or has a life threatening complication. For babies who are not expected to survive, discussions will explore your wishes for your baby during their time with you. This may include where you would like to your baby to receive care (the neonatal unit, a hospice, or your home), or where you would like your baby to die (on the neonatal unit, at a hospice, or your home). All decisions will be taken with you and your family, and support will be provided throughout by specialist professionals who work with families whose baby is very unwell. 

Your baby may experience physical changes towards the end of their life which the healthcare teams working with you, will help to prepare you for. For example your baby's breathing may change, their skin colour may change, their body temperature may change. There are things that you can do with your baby during this time to create family memories, such as skin to skin care, or bathing your baby. The team working with you will support you to undertake any of these activities, where possible. 

Your baby can receive palliative and/or end-of-life care in different places, including at their cot or in a private room (where available) in the neonatal unit, at a childrens hospice, or at home. The team will discuss each of these different options with you, to explore your wishes for your baby. Most babies are able to be transferred to a different place for on-going or end-of-life care, however there may be some circumstances where a baby is too unwell to transfer to a hospice, or to home, for end-of-life care. In this situation the team will work with you to ensure that you can plan for your babys end-of-life in the neonatal unit, as you would like to, including your family and friends where possible. 

You will always be supported during palliative and/or end-of-life care by specialist healthcare professionals. These professionals may include psychologists, psychotherapists, or specialist from the neonatal, midwifery, or hospice team. Support will be on-going and provided during your stay on the neonatal unit and beyond. If your baby sadly dies, on-going support is available following your baby's death either from these specialists or charities dedicated to supporting parents in baby loss. Information about these charities can be found on this website. 

If your baby sadly dies you may be able to spend more time with them, following their death, on the neonatal unit, at the hospice, or at home. You will receive specialist support to guide you through all of the process which will need to be undertaken, such as registering your babys death and organising a funeral. For babies who die within 28 days of birth, a local review of their care will be undertaken, and the neonatal team will discuss this with you. Specialist support will also help to provide information and access to faith services available, and charities organisations which provide a community of support for parents who have been through similar experiences.  

Neonatal organ donation is rare but is sometimes possible. If you would like to discuss this option, there are specialist teams in each hospital who can provide more information around your babys unique circumstances, and what organs or tissue they may be able to donate. Your neonatal team can refer you to these specialist teams. 

Every family’s beliefs, traditions, and values are deeply important. In neonatal palliative and or end-of-life care, we recognise that culture and faith play a vital role in how families find meaning, comfort, and connection. 
Your baby's neonatal team will encourage you to share what matters most to you, whether that includes spiritual practices, cultural rituals, family traditions, or guidance from faith leaders. 
The neonatal team will listen and work with you to ensure your beliefs are respected and reflected in every part of your baby’s care.