What is palliative care?

Palliative (say "PAL-ee-uh-tiv") care is a kind of care for people who have a serious illness. The specialized palliative care team may be consulted to work together with and in cooperation with the neonatal intensive care unit (NICU) or primary care team. Palliative care focuses on improving your baby's quality of life. It also provides support for you and your family.

Palliative care for newborns is not only for end-of-life care. There is a large range of care they can offer. This may include medicine to reduce pain or other symptoms. Your baby can get care to treat an illness and get palliative care at the same time. You don't have to choose one or the other.

Many different staff members may be involved in palliative care. Your baby's care team may include doctors, nurses, social workers, and spiritual advisers.

You are a big part of the care team too. Your baby needs you. Your presence, your touch, and your voice are all important to your baby.

How can palliative care help your family?

Having a baby who is seriously ill may make you feel sad, scared, or alone. Your baby's palliative care providers will help you in any way they can through this journey.

• They will help you understand your baby's condition. Then you can better decide what treatments you want or don't want for your baby.
• They will help you learn what you can do to care for your baby in and out of the hospital.
• They can help you make future plans for your baby's health and medical care.
• They will ask questions about how your baby's illness is affecting you and your family’s health, well-being, and personal and social relationships.
• They will provide or help you find emotional and spiritual support for you and your family.

What can you expect?

• Your baby's healthcare team will work together and focus on your baby's comfort.
• You may see tubes and wires attached to your baby. This can look scary. But these things help the staff take care of your baby. The tubes may supply oxygen, fluid, or medicine to your baby. The wires are attached to machines that keep track of your baby's pulse rate and other vital signs.
• If your baby has trouble breathing, the doctor may talk to you about different supports that may be available. This may include an oxygen mask and comfort medicines. Your healthcare team will help you decide which level of support is best for your baby.
• It's hard to be apart from your baby, especially when you worry about your baby's condition. Know that the hospital staff is well prepared to care for babies receiving palliative care. They will do everything they can to help. If you need it, ask for support from friends and family. You can also ask the palliative care team about counselling and support.