Appendix E PatchSA Advance care plan

This tool is for discussing and communicating the wishes of a child or young person and their parents and/or family. Its aim is to explore what may happen as the child’s illness progresses, particularly towards the end-of-life, but at a point when there is time for decisions to be discussed and made. It is particularly useful in an emergency when informed consent cannot be given by the patient or next of kin.

Follow the Child: Planning and Having the Best End-of-Life Care for Your Child by Sacha Langton-Gilks

Advance care plan

Personal details

Patient’s name
Date of birth Gender
Address Telephone
Primary caregiver Relationship
Contact details Cell
Date of plan Review date

Family members involved in and agreeing to care plan

Name Role
Child (if applicable)

Professionals involved in and agreeing to care plan

Name Institution Role/position

Category of life-limiting condition

Category of life-limiting condition Diagnosis
Cure is possible, but can fail (e.g. cancer)
Despite intensive treatment over a period of time aimed at prolonging life, early death is inevitable
Despite palliative care over a long period, the condition progresses over many years (e.g. muscular dystrophy)
Severe, non-progressive disability following an irreversible injury (e.g. brain or spinal cord injury)
Irreversible/inoperable congenital disorder (e.g. complex congenital heart disease)

Other/specific reasons for ACP


Current clinical and psychosocial problems

Problem Management plan

Goals of care


Intervention level

Intervention level Care approach
1 Comfort care only, avoid painful procedures/investigations unless information gained helps to achieve goal of comfort
2 Comfort care with specific life-supportive care (e.g. IV antibiotics, blood transfusions) but excluding mechanical ventilation
3 Includes mechanical intervention and all forms of life prolonging care (e.g. dialysis)

Cardiopulmonary arrest: resuscitation status

Category Notes
Full CPR
Modified CPR: define, e.g. fluids but no chest compressions, breaths
Do not attempt CPR

Intervention detail

Cardiopulmonary resuscitation Yes/No Detail
Airway management
Breathing support
Circulation (ECM)
Further care Yes/No Detail
ICU admission
Intropic support
Blood products
Blood tests
Pain control/comfort

Place of care

End-of-life/terminal stage
Organisations and individuals involved in care

Spiritual and psychosocial care and support

Spiritual comfort
Faith/belief system
Important rituals
Family support

Possible scenarios or complications

Based on weight
Problem Action Limitations

Medication management

Based on weight
Medicine Dose and frequency Route Indicated for Stop if

Additional medicines/therapies that may be needed for palliative care and symptom management

Medicine Dose and frequency Route Indicated for Stop if

Syringe driver medicines

Medicine Dosing


Permission to share this information with others

Yes/No Individual or institution

Signature of parent/legal guardian: _______________________
Date: _____________________

Signature of child (if applicable): __________________________
Date: _____________________

Statement of interpreter (where appropriate)
I have interpreted the information above to the child/young person/parent to the best of my ability and in a way in which I believe the person can understand.

Name: ________________________

Signature: _____________________

Date: _________________________

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