Appendix J PatchSA terminal care plan and end-of-life care plan checklist

Basic information	Details	Comments/treatment
Personal details
Child’s name
Main caregiver/s
Home language
Diagnosis
Symptom management
Pain	Yes / No
Breathlessness	Yes / No
Nausea/Vomiting	Yes / No
Confusion	Yes / No
Seizures	Yes / No
Agitation/Restlessness	Yes / No
Excessive secretions	Yes / No
Other:	Yes / No
Comfort measures
Non-essential medication stopped	Yes / No
Inappropriate interventions stopped: Intravenous therapy OGT/NGT and gastrostomy Catheter O₂ Blood testing	Yes / No Yes / No Yes / No Yes / No Yes / No
Resuscitation status agreed and recorded	Yes / No
Use of syringe driver discussed if child unable to take oral medication	Yes / No
Spiritual and psychosocial needs
Memory making discussed?	Yes / No
Spiritual needs discussed?	Yes / No
Person to contact for spiritual support and contact number:
Communication with healthcare providers
Who are the primary care team?
How can they be contacted?
Communication with the family
Who makes the decisions in the family?
How can they be contacted?
Organ donation discussed?	Yes / No
Have family been advised on what to say to the siblings?	Yes / No
Out of hours details (if child being cared for at home)
Who will be called in an emergency?
Who will confirm death?
Does the family know what to do?	Yes / No
Do they have enough medication?	Yes / No
Do they understand that the child is dying?	Yes / No
Do they know how to manage the situation if the child is dying?	Yes / No
Do they know how to tell if death has occurred?	Yes / No
Are they aware of the changes that will happen to the body once death has occurred?	Yes / No
Arrangements immediately after death
Memory making opportunities offered? Photographs Lock of hair Hand/footprint	Yes / No Yes / No Yes / No
Organ donation	Yes / No
Burial or cremation plan	Yes / No
Funeral home and contact details:
Funeral policy?	Yes / No
Spiritual support needed?	Yes / No
Family members contacted?	Yes / No
Bereavement support for family arranged?	Yes / No
Transport arrangements for family to get home	Yes / No
Legal arrangements
Postmortem required	Yes / No
Repatriation of body	Yes / No
Other details or information