Beyond the specific recommendations given in this guideline under the relevant topics, there are general recommendations that are important in any palliative course, and at any stage of the child's illness. Therefore, they are repeated separately here.
General
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DO
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- Always use an individualised care plan, provided the child and parents have consented to the plan.
- Should questions arise, consult colleagues with expertise in palliative care.
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Communication
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- Provide clear information at the right time throughout the palliative process.
- Actively listen to the child and parents/family, consult and decide together if possible.
- Take into account:
- Needs and wishes of child and family
- Siblings
- Physical, psychological, social, and spiritual impact
- Cultural background
- Keep in mind that how (bad) news is communicated to child and family often determines the course of communication and shared decision-making in the palliative process.
- Offer ACP conversations as a standard part of care for all children with a palliative diagnosis and their families.
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Consider
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- The use of sound and video recordings for all important discussions so the child and family can listen back to the conversation.
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Treatment
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- Always keep in mind that involving additional caregivers in the home or in the hospital may be perceived as burdensome by the child and family.
- Evaluate the effect and side effects of each treatment at the appropriate time, and adjust treatment as needed. Involve child and family in this process.
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