Forgoing hydration and nutrition

Effect of abstinence from (artificial) fluids and/or nutrition

Include decision-making about not starting or discontinuing (artificial) fluids and/or nutrition in Advance Care Planning conversations.
In preparation for the last phase of life, communicate with parents on the topic of (artificial) fluid and/or nutrition abstinence.
Clarify with child (if possible) and parents that not starting, reducing or discontinuing (artificial) fluids and/or nutrition at the end of life is part of the natural process.
With refractory symptoms, weigh the pros and cons of not starting or discontinuing (artificial) fluids and/or nutrition.
Reduce or discontinue (artificial) fluids and/or nutrition if the child experiences discomfort as a result.
Continue to confirm that not starting or discontinuing (artificial) fluids and/or nutrition is in the child's best interest and that the child is not suffering extra.
Discuss the joint assessment of signs of discomfort, whether based on a specific scale or not, and agree how to deal with it.
In case of discomfort due to thirst/hunger, discuss to initiate additional sedation.
Continue to give the child good lip and mouth care.
Prepare parents for the changing appearance of the child.
Document the policy around (artificial) fluids and/or feeding in the medical record and individual care plan.

Consider

Consider comfort feeding if (artificial) fluids and/or nutrition are not started or discontinued.
Consider organising training for caregivers on the responsibility and communication around not starting or discontinuing (artificial) fluids and/or nutrition in the terminal phase.

Topic	Explanation
Comfort	Comfort arising from feeding or from stopping feeding. Comfort of the child comes first.
Change in the child's appearance	Dehydration causes the child's face and body to change.
Duration of the process	Impossible to predict well/precisely. Prediction can possibly be supplemented by indication, for example, if anuria occurs, the kidneys have stopped functioning and it rarely lasts more than a few days.
Care during the process	Although the children often do not show signs of discomfort, it may still be good to continue to perform certain relieving actions: wetting lips, putting drops in eyes if necessary, repositioning the child, etc.
Rethinking	Sometimes during the process the parents feel the need to revisit the considerations that led to the decision about stopping fluids and feeding. Take the time to do so.