Glossary

The following list has been created to help parents and carers understand terms that may be used
by health professionals when discussing end of life care decisions for their child.

It is not intended for adult patients. 

B

Bag and mask

  • Handheld emergency resuscitation equipment used to provide oxygen to a patient who is not breathing
  • The mask is fitted over the patient’s mouth and nose using a tight seal to optimise breathing
  • The attached air bag can then be squeezed to push oxygen into the lungs.

Bi-Pap/CPAP (Bi-level Positive Airway Pressure/Continuous Positive Airway Pressure)

  • A non-invasive machine (that is, there are no tubes going into the child’s body) that can assist children to breathe
  • It does not require the insertion of tubes into the child’s airway
  • The child will need to wear a fitted face mask that is connected to the BIPAP/CPAP machine
  • This type of breathing support can be given at home
  • This is a non-invasive treatment. 

C

Cardiac arrest

  • Occurs when the heart stops beating
  • No blood is pumped around the body and the person will usually die.

Cardiopulmonary resuscitation (CPR):

  • An emergency intervention that may be done when a child’s heart suddenly stops pumping
  • Breathing support is provided alongside chest compressions to pump the heart and deliver oxygen to the brain in an attempt to restart the heart
  • CPR is often not successful.

Comfort care

  • Care is provided when there has been a change in the goals to care for a child with
  • a life limiting illness
  • Treatment options that aim to prolong life are reduced or stopped and the goal of this care changes to promote their comfort
  • This includes the easing or prevention of symptoms that may cause distress or suffering.

Community nurse

  • A nurse who works in the community (your local area) and provides care in the home of a patient and family
  • A community nurse works alongside your child’s team at the hospital but does not replace them.

D

Dyspnoea

  • The feeling of breathlessness, or being unable to breathe adequately
  • Dyspnoea can cause anxiety, being anxious can make it harder to breathe
  • Dyspnoea can be treated with medications. 

E

End of life care

  • The care given to a child when their condition has deteriorated and they are close to death
  • The period of end of life can be different for each child and may vary from hours to days to weeks or months. 

G

Goals of care

  • How much treatment parents/carers want for their child
  • This may include the location where they want them to be or things they might like to achieve (such as birthday, holiday, and school dance)
  • Discussions that establish the goals of care and treatment options (for example intubation, ventilation, CPR) usually occur with the medical team when a child’s condition has deteriorated.

H

Hospice

  • In Australia, hospice generally refers to a place where children with a life limiting illness
  • and their families can go for a break (respite)
  • For a child who is deteriorating, some families choose to go to a hospice for end of life care
  • Hospices have experienced palliative care staff available and provide care in a home-like environment
  • An example of a children’s hospice is Bear Cottage in Manly, Sydney. 

I

Informed decision-making

  • Parents and carers are able to make informed decisions when they have been given enough information about their child’s condition
  • Parents/carers need to have a good understanding of this information and the treatment options that are available to help them make an informed decision that is right for their child and family. 

Intubation

  • An airway tube that is inserted into the mouth or nose of a child to help them breathe if they are unable to properly do so themselves
  • Intubation is used to assist breathing
  • It is regarded as ‘invasive’ treatment. 

L

Location of care

  • The place where a child is receiving care
  • This is commonly at home, in hospital or a children’s hospice. 

N

Noisy breathing

  • When death is near, breathing can often become rattly or noisy, due to pooled secretions in the throat
  • This can be distressing to listen to, but is rarely of concern to the patient
  • It is usually a sign that death is near. 

O

Oral airway suction

  • Occurs when a tube is inserted into the mouth or nose of a child and removes secretions 
  • Suctioning is necessary when a child has difficulties swallowing or has increased secretions that affect their ability to breathe.

Oxygen

  • Children may require extra oxygen (supplemental oxygen) for a number of reasons (such as a severe respiratory infection)
  • A child’s respiratory doctor will usually decide whether extra oxygen should be given
  • Oxygen is considered a medication because of its ability to affect the body
  • Oxygen saturations or ‘sats’ measure or estimate how much oxygen is in the blood.

P

Paediatric

  • Infants, children and young people under 18.

Palliative care

  • Skilled support and symptom management given to improve the quality of life of patients who have a serious or life-threatening illness. 

Palliative care team

  • Specialist health professionals (doctors, nurses, psychologists, social  workers, physiotherapists, occupational therapists and child life therapists) who have skills and experience to provide a high level of care for a person with a life threatening illness and their family
  • They also guide and support other health care professionals involved in the care of the child.

Q

Quality of life

  • An assessment of a person’s own sense of wellbeing, such as their level of comfort or ability to enjoy or pursue daily activities without suffering.

S

Spiritual support

  • Spirituality can be difficult to describe but can be anything that shapes beliefs  and brings understanding and meaning to our lives
  • It is those things that bring hope, purpose, comfort and a source of strength
  • It is often through connection with people or things that have meaning or are sacred
  • Spirituality can be defined through religion or belief in a God, being, or higher power
  • It can be through faith, prayer and meditation or, for example, time to reflect on your own or with someone else
  • For some people, spiritual support is just having those they love around them and for others strength is drawn from a deep faith.

T

Terminal breathing

  • Irregular and very shallow breathing, usually with long pauses
  • This can be a sign that death is near.

Terminal care

  • Care provided in the last few days or weeks of life. 

Tracheostomy

  • A surgical procedure to cut an opening into a child’s windpipe (trachea) so that a special tube can be inserted to assist with breathing 
  • A tracheostomy can be permanent or temporary
  • This is an invasive procedure.

V

Ventilator

  • A breathing machine designed to breathe for a child when they are unable to do so  themselves
  • A ventilator is a common piece of equipment used in intensive care units
  • When a patient is on a ventilator they are often referred to as being “ventilated”.