Advance care planning terminology

  • This document adopts the following definitions.

    Advance care plan

    In the paediatric setting, an advance care plan is a document that captures the agreed goals of care for the child and documents the decisions that have been made regarding medical treatments that should or should not be provided. It is a communication tool, not a legal document.

    Advance care planning

    Advance care planning is ‘a process of discussions between families and health care providers about preferences for care, treatments and goals on the context of the patient’s current and anticipated future health’ (Spicer et al. 2015).

    It is a process in which:

    • the clinical team shares with the family knowledge about the child’s condition, prognosis and potential efficacy and benefit versus burden of various interventions
    • the family shares with the clinical team their values, goals and hopes and what they believe their child might experience as a benefit or a burden.

    The objective is to determine what the overall goals of care are and what interventions should and should not be provided. This information will guide current treatment as well as future treatment in the event of a sudden, acute deterioration.

    Goals of care

    The goals of care for an individual patient are the overarching aims of medical treatment. It outlines what the person, family and medical team hope to achieve during the course of care. Goals of care can be viewed as a continuum of care from active treatment to prolong life at one end, to the prioritisation of symptom management and end-of-life care at the other. In between lies a zone where patients, families and clinicians try to find a balance between prolonging life and optimising comfort.

    Life-limiting condition

    Any condition that is likely to result in a reduced life span.

    Life-sustaining treatments

    Treatments that can sustain life in the presence of a potentially fatal condition. Examples include cardiopulmonary resuscitation in the event of a cardiac arrest, mechanical ventilation in the event of respiratory failure, dialysis in the setting of kidney failure, and artificial hydration/nutrition.

    Withdrawing and withholding  treatment

    Withdrawing treatment is the removal of medical interventions that are burdensome and non-beneficial. It may result in the patient dying from their underlying condition.

    Withholding of treatment is the decision not to provide medical interventions that would artificially prolong life, which may result in the patient dying from the underlying disease or illness. (Department of Health 2012)

    Palliative care

    Palliative care ‘is an active and total approach to care that continues from the point of diagnosis or recognition throughout the person’s life, death and beyond. It embraces physical, emotional, social and spiritual elements and focuses on the enhancement of quality of life for the person and support for the family. It includes the management of distressing symptoms, provision of respite care for children and families and care through to death and bereavement. Palliative care can be given alongside active interventions; it is not confined to situations where a decision to withhold or withdraw active treatment has been made’ (Larcher et al. 2015)