Together for Short Lives
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Palliative and ongoing care

Your team may have talked to you about palliative care for your baby. This can be a scary term, but actually palliative care is about providing the best possible comfort and quality of life for a baby, however long they are with us, whether that is a short time, or even for many years.

It is about managing a baby or child’s pain and symptoms, but also about supporting the whole family by providing emotional, spiritual and practical support throughout their life. Palliative care can be delivered throughout their life by a range of different professionals at home, in hospital or in a children’s hospice.

Palliative care can be provided by all healthcare professionals and members of your neonatal unit care team should be able to support you and your baby through your palliative care journey. Sometimes, a children’s hospice or palliative care team will be available to support you alongside the team that has been supporting you in the neonatal unit.

A palliative care team can be based in the hospital, in the community or as part of a children’s hospice. They will have specialist knowledge in managing any symptoms your baby may have and in supporting your family through your baby’s life and into bereavement. They can provide ongoing support to you and your whole family. It may be helpful to talk to a member of staff from your local hospice or palliative care team early on. They can talk to you about the kind of support that they can offer and the options available to you.

Some children’s hospices have dedicated perinatal or neonatal link nurses who can support you and be the link between the hospice and your hospital. Please speak to a member of your baby’s team if you would like to arrange a visit to your local hospice to see what it is like or be shown a video tour.

Parallel planning

It may be that your baby’s prognosis is unclear and that it’s suggested you plan both for their ongoing care needs and for their end of life. This planning, for both possible outcomes, is sometimes called ‘parallel planning’. It means that we are hoping for the best whilst also planning for the worst case scenario so we then have a plan in place for both scenarios. For example, if your baby lives longer than expected, as well as for their death.

Advance Care Planning (ACP)

An Advance Care Plan (also called an Anticipatory Care Plan or Future Care Plan depending on where you are based in the UK) is a care plan that sets out agreed actions to be followed if or when your baby’s condition gets worse. The ACP will be specific to the needs of your baby and your family. It can be shared with all professionals involved in the routine care of your baby as well as those who might be called in an emergency. This means that everyone has clear information about your wishes and needs.

Advance Care Plans should be reviewed regularly to ensure that the plan of care is still appropriate and that everyone remains in agreement.

An Advance Care Plan may include the following elements:

•       Symptom management plan

•       Discussions about your preferred place of care (home, hospice or hospital)

•       A plan for your baby’s end of life care

•       Discussion about organ and tissue donation

•       Discussion about post mortem

Decision making

Making decisions which influence your baby’s care and treatment can be difficult. Your baby’s neonatal team is there to support you through the choices to be made. You should be included in all discussions about your baby’s care so that you can understand the implications of the decisions that need to be made. This means that doctors should invite you to be present and to take part in the discussion when they are on the neonatal unit reviewing your baby.

ARC: Antenatal Results and Choices offer impartial information and support to help decide on your next steps in making antenatal decisions.

Seeking a second opinion

It can be very difficult to know the best thing to do when your baby does not have a firm diagnosis or a clear prognosis. You have the right to seek an external second opinion about your baby’s prognosis and/or potential treatments as it can help you and your care team understand more about your baby’s condition and what treatment approaches would be in their best interests.

If this is something you would like to explore, please do speak with your care team and they can help and support you through this.

Please remember, you do not need to undergo this difficult and challenging time on your own. Hospital, community and hospice teams (be it healthcare, chaplaincy, psychology and/or family support workers) are there to help, support and guide you when and wherever you need them.

For supportive information for families about seeking an external second opinion, visit The Royal College of Paediatrics and Child Health (RCPCH) website.

Ongoing care

Depending on your baby’s condition, your care team may talk to you about their ongoing care and where this will take place. You may wish to stay at the hospital where your baby has been looked after since they were born, you may be able to take your baby home, to a hospital nearer to your home, or to a children’s hospice.

You will first need to plan with your care team about the transfer to your chosen place to ensure that your baby will be medically fit to travel and is kept as safe and comfortable as possible on the journey.

If it is possible and you would like to take your baby home, it will be important that all your needs are assessed so that any appropriate medical and nursing support can be put in place. There may be a community children’s palliative care team available to support you at

home. These teams come in different forms and can provide care in different ways, with doctors, nurses, pharmacists and family support workers as part of the team.

Children’s hospices

You may have met with a member of a local children’s hospice team on the neonatal unit and already have a good knowledge of how the hospice can support you.

Children’s hospices can provide on- going care for your baby and emotional, social and spiritual support for you and your family. Children’s hospice services can deliver this care in a purpose built building and/or in the home (commonly called ‘hospice at home’).

Services may vary from hospice to hospice, but can include:

•       Support for the entire family (including siblings, grandparents and the extended family)

•       End of life care and use of a cool room or cooled cot; also known as a cuddle cot.

•       Practical help, advice and information

•       Specialist short break care

•       Specialist therapies, for example, physiotherapy, hydrotherapy, play and music therapy

•       Bereavement support

•       Provision of information, support, education and training where needed for parents or carers

You can find information about individual hospices local to your area in our service directory.