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.

Advance care plan

Personal details

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

Family members involved in and agreeing to care plan

Name		Role
Parent
Child (if applicable)
Other

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)
Drugs/cardioversion
Further care	Yes/No	Detail
ICU admission
Intropic support
Oxygen
Hydration
Nutrition
Blood products
Antibiotics
Blood tests
Pain control/comfort

Place of care

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

Spiritual and psychosocial care and support

Spiritual
Spiritual comfort
Faith/belief system
Important rituals
Psychosocial
Family support
Other

Possible scenarios or complications

Based on weight
Date
Weight
Problem	Action	Limitations

Medication management

Based on weight
Date
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
Morphine
Midazolam
Phenobarbitone
Buscopan

Consent/agreements

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: _________________________

Appendix E PatchSA Advance care plan

Recommended reading and resources for holistic assessment and advance care planning:

Advance care plan

Consent/agreements