Palliative care

What is Palliative 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 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 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 there is hope for the best whilst also planning for the worst so there is 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 go through 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.