I Am Living

Children and young people living with a life-limiting condition are offered palliative care with the consent of the person and their family. This is an active and comprehensive approach to care, that often begins at the time of diagnosis and addresses physical, psychological, social, spiritual, and cultural needs through to dying, death and bereavement. The focus is on providing a quality of life for the child or young person, including the management of symptoms; family support via short breaks through respite care; and care throughout the illness and beyond.

Families and palliative care providers work together to plan and coordinate the care according to the changing needs throughout their illness. Stopping treatment does not mean giving up hope. In addition to managing difficult symptoms (such as pain), care may include assisting family members to maintain their normal activities. Where possible families are encouraged to care for their children at home using palliative care to achieve this goal.  The palliative care team can

  • organise home visits including medical, nursing, social work, physiotherapy, occupational therapy, and play therapy. Services may also be provided through telehealth (i.e. person, family and health professionals communicating via video-conferencing through the Internet) depending on the need;
  • coordinate home care by linking families with available hospital and community services;
  • provide information for available respite options;
  • arrange school visits to help teachers and staff understand and facilitate the support needed to allow a child with a life-limiting illness to attend school. Siblings can also be supported through these visits;
  • provide bereavement support for families including parents, siblings, and other extended family members;

Sometimes, a family may feel that they are not able to care for their child at home and wish to admit their child to the hospital. Palliative care can also support care in this setting.

A referral to palliative care services can be made at any point during the course of a child’s or young person’s illness. As, it is often difficult to predict the progression of many childhood diseases, it is a good idea to consider palliative care referrals early.

A referral to palliative care does not mean you have given up hope. In fact, it gives you and your family more time to plan your child’s care and to provide the best possible support. Medical referrals are required if you think that paediatric palliative care may benefit your child. Contact one of your child’s doctors (for example, a General Practitioner or Paediatrician), to schedule an appointment.