End of life care is the holistic and extensive care of neonates with advanced, progressive and/or incurable life limiting or life threatening conditions.
What is end of life care?
End of life care is the holistic and extensive care of neonates with advanced, progressive and/or incurable life limiting or life threatening conditions. It encompasses all aspects of the neonates and their family’s care including the physical, psychosocial, cultural and spiritual needs. EOLC focuses on preparing for the anticipated death and managing the end stage of a terminal illness, including care during and around the time of death, immediately after the death and continues into bereavement. EOLC should be instituted when the goals of treatment change and the neonate is recognised as dying.
What is palliative care?
Palliative care is a planned intervention focused on improving the quality of life for neonates living with a life limiting and/or life threatening conditions and their family. It addresses and relives the physical, emotional, spiritual, cultural and social needs of the neonate and their entire family. Palliative care should be introduced early and may be integrated alongside life sustaining treatment. Palliative care improves the condition of the neonate’s living and dying, while supporting the family with empathy and culturally sensitive respect. Palliative care should be introduced with the understanding that the neonate may survive the condition and no longer require a palliative approach to care.
Life Limiting: A condition with no reasonable hope of cure and from which the neonate will die prematurely. (Limits of viability, congenital anomaly)
Life threatening Condition: A condition with a high probability of death due to severe illness, but may be a chance of long term survival. Curative treatment may be considered feasible with the recognition it may fail. LTC can be divided into 4 group;
- Group 1 – LTC which curative treatment may be feasible but can fail. Palliative care should be offered alongside cure focused treatment.(Cancer)
- Group 2 – LTC condition where premature death is inevitable. (CF)
- Group 3 – A progressive condition without curative treatment options; treatment exclusively palliative care.
- Group 4 – Irreversible, but non-progressive LTC with complex health care needs leading to complications and likely preterm death (CP, HIE)
Dying: The terminal phase of life where death is imminent and likely to occur in hours, days or weeks.
Quality of life: Encompasses all aspects of the emotional, social, physical wellbeing, intellectual capability and ability of the person to independently perform ordinary tasks of living.
Life sustaining treatment/ intervention: Treatment or intervention that has the potential to prolong life.