A care plan for adults with a terminal illness usually includes Health Directives and/or various Powers of Attorney, which are legally binding documents to be used when the person no longer has the capacity to make decisions for themselves.  They record the adult person’s health care choices, such as whether to pursue invasive life-sustaining measures such as ventilation, or when to withdraw administration of fluids and nutrition.  These documents can offer reassurance to those involved, that death will occur with a balance of ongoing treatment while avoiding ineffectual options, and maintaining dignity.

A care plan is different for children and teenagers with a terminal illness, as they are reliant on parents (or others) to make health care decisions for them. This doesn’t mean that they shouldn’t be involved in the decision making process for their future care, and have their choices recorded.

How children understand their illness and communicate their feelings will be dependent on their developmental level.  Children can benefit from being involved in the care planning process, when expressing a wish to die at home or wanting to avoid painful procedures, as well as ensuring adequate pain relief will be provided.  These issues can be identified early and can then be negotiated and resolved.

Involving teenagers is particularly important, as they may not have reached the legal ‘age of adulthood’ and may be denied from contributing to important decisions when they ethically deserve to have a say in their care.

The aim is to encourage early communication between parents and the health care team, and where appropriate to include the child or teenager, to ensure they have time to consider the various health care options and relevant information, and prepare for the future decisions they may be asked to make.

The provision of palliative care is not limited to the sick child. Parents, siblings, grandparents and extended family all require emotional, practical and spiritual support during the child’s illness, and they should receive individualized, family-centered grief support.  See our article – Grief Counselling here.

For more guidance please visit:  Paediatric Palliative Care Website

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