For children with a terminal illness, a time may come when you may begin to think about withholding certain resuscitation interventions (such as CPR, intubation and ventilation) because there may be little or no benefit to your child’s quality of life or hope of resuscitation being successful.
Beginning these conversations is difficult and requires the guidance and support from health professionals you trust. It is better to have these conversations when you have the time and space to ask questions, have options explained and feel comfortable with your choices.
It means that in the event of an unplanned crisis clear instructions are in place for medical staff and you have a greater understanding of what is happening.
What is a resuscitation plan?
A resuscitation plan is a medical document that is written by the medical team that knows your child best. It aims to clearly communicate your end of life decisions and planning that has taken place for your child when they become very unwell and their recovery is uncertain.
The resuscitation plan clearly documents your resuscitation goals for your child to ensure the focus of care is about their comfort rather than life-prolonging measures (for example using oxygen or suction to assist with breathing instead of commencing CPR and/or intubation).
A resuscitation plan, does not mean that your child will die soon or that it will be needed immediately. It also does not mean that people will stop trying to help your child. What it does do is improve communication for health professionals who care for your child when they deteriorate by ensuring there is planning and preparation in place to meet your goals of care.
Why you should have a resuscitation plan
- Document clear and consistent information about end of life care discussions you have had with various medical teams caring for your child.
- Document clear and consistent information about resuscitation goals that focus on your child’s comfort rather than invasive interventions.
- Improve communication between families and medical teams caring for your child who is deteriorating or has limited time left.
If you feel your child and family could benefit from having these plans in place, we encourage you to talk with your child’s medical team and/or palliative care service.
If you change your mind
These plans can also be changed or stopped at any time. Changes to the resuscitation plan are most commonly made to reflect changes in a child’s condition.
If your resuscitation goals change, we encourage you to talk with the medical team caring for your child. It is important that there is clear communication and that any changes are updated on a new document. Ideally this should not occur during a crisis.
Remember the resuscitation plan is not an ‘order’. Its purpose is to provide written medical information, when necessary, to communicate your goals of care to all health professionals caring for your child and avoid repeated conversations that can be distressing.