Circle Of Care Optimising Outcomes for Newborns (COCOON)

Palliative care on Butterfly

  • The vast majority of babies admitted to Butterfly will be discharged into the care of their parents. However, for a small minority who are referred to RCH with rare lethal conditions, or for who illness is very severe, palliative care may be discussed and provided.

    Palliative care focuses on providing patients with relief from the symptoms, pain, physical and mental stress of a serious illness, whatever the diagnosis. The goal of palliative care is to improve the quality of life for both the patient and the family. Palliative care may be appropriate at any age, and at any stage, in a serious illness.

    Palliative care will not be instituted without detailed discussion with you – the baby's family. Many people might be part of these discussions, but they will always include parents and the treating clinical team. With your permission, or at your suggestion, other relevant people may be invited to these meetings including extended family, social and pastoral care workers, and other specialists that have been involved in your baby's treatment.

    If a decision is reached to provide your baby with palliative care, a number of ways to remember them will be offered to your family, including taking photographs, collecting hand and foot prints, collecting a lock of hair, addressing any religious needs your family may have, and arranging visits with people important to you and your baby.

    Where babies are on life support, a change of care from an intensive approach to a palliative approach will be conducted in a private part of the ward where you will be able to stay with your baby overnight if required. The process may involve administration of pain relieving medication to ensure that your baby does not suffer, followed by removal of the breathing tube that connects your baby to a ventilator. If you wanted, your baby could be placed in your arms and may die peacefully there.

    If there is an expectation that your baby will survive for a prolonged period without life support, consideration can be given to discharging you baby home with you. In this instance, a dedicated Palliative Care team will be consulted and they will ensure that adequate community support is in place for you to care for your baby at home.

    Our social workers will discuss the processes that take place after a baby has died, including arranging a funeral.

    The medical team is legally required to consider whether or not babies who die would benefit from an autopsy. This is an examination performed after death on parts of the body, or all of the body, to help clarify why a patient may have died. Your doctor may discuss autopsy with you before or after your baby has died, and will ask you to sign a consent form indicating whether or not you give permission for your baby to undergo this type of examination. Where autopsy is performed, this can sometimes result in some delay before your baby's body can be released for a funeral.

    In some circumstances, where the death of a baby is unexpected, a referral has to be made to the Coroner. If the Coroner decides that an autopsy is required, then the clinical team will discuss this with you and make the appropriate arrangements.

    If you baby has a disease that will result in their death, we will do everything we can to minimise the trauma of their death for them, and for you and your family.

    Organisations that can offer additional support to help you deal with your loss are listed here:

    • Australian Centre for Grief and Bereavement: Information on grief and loss, counselling and referral. 
    • SANDS: Miscarriage, stillborn and newborn death support. 24/7 support line, online and peer support groups, men-only groups, counselling, referral and information.
    • SIDS and Kids: Information on SIDS and kids, safe sleeping education, 24/7 help line, bereavement support services.
    • The Compassionate Friends: Providing grief support after the death of a child, linking families and peer group support, online and crisis support.  Phone 1800 641 941.