Advance Care Planning & Shared Decision-making

 DO

• Offer ACP conversations as a standard part of care for all children with a palliative diagnosis and their families. In doing so, consider the specific situation and burden bearing capacity of child and family.
• Integrate ACP as a continuous and dynamic process in the care of child and family from diagnosis through the end of life by holding regular conversations.
• Start ACP conversations early in the disease process to encourage acceptance and allow space to prepare for the future.
• Hold timely discussions with the child and family when the need to prepare for specific scenarios increases, as the child's condition deteriorates or when the child approaches end of life.
• Provide explanations and written information to child and family to prepare for an ACP conversation and provide opportunities to include others they may wish to have present during the conversations.
• Include the content of ACP conversations and any treatment arrangements in the medical record.
• Have a health care provider trusted by the child and family lead the ACP conversations. This may be the primary caregiver, or another trusted caregiver, such as a case manager, or a caregiver outside the treatment team trained in ACP conversations.
• When preparing and conducting ACP conversations, use a conversation guide to provide structure and to ensure relevant topics are covered.
• Structure the ACP process through preparation, interviewing and reporting.
• Discover, discuss and note in the ACP process what the child and family's values, goals and preferences are for future care and treatment medically, psychologically, spiritually and socially.
• With the consent of parents and child, share specific treatment agreements with all health care providers involved.

 DO

• Think ahead of time what treatment decision(s) must be made in the short and longer term and how you will explain the need for these decisions to child and/or parents.
• Consider in advance what (treatment) options are available and how you will explain them in a way that the child and/or parents can understand.
• Consider in advance how many conversations you think you will need to come to a decision and within what time frame you would prefer to have these conversations. Explain this to the child and parents.  
• Start the conversation with an agenda and ask the child and/or his parents what they want to discuss.
• During the conversation, strike a good balance between the information you give and the information you want to receive from the child and/or his parents.
• Explain the advantages and disadvantages of the treatment options clearly and concretely. This includes the option to “wait and see” and the option to forgo further curative or life-sustaining treatments and focus entirely on comfort care.
• Give the child and/or his parents the opportunity to ask questions about the various treatment options and to share their views and experiences. 
• Consult with the child and/or parents as to their preference and, if asked, explain your preference as well.
• Come to a decision that all involved are comfortable with and summarise it. Prevent the child and/or his parents from feeling too burdened by the responsibility of this decision. 
• Involve the child even if he or she is under 12. Do this in a way that is developmentally appropriate. This also applies to the words you choose.

 DO

• Involve child and family in framing ACP and shared decision-making in terms of form, content, preferred place, time and stakeholders and tailor this process to their needs.
• Involve the (perspective of the) child in ACP conversations and shared decision-making in accordance with the child's developmental age.
• In the ACP process and in shared decision-making, recognize the child and family as experts in living with illness and in assessing their quality of life. Ensure your actions reflect due consideration for the knowledge and experiences of child and family.

 DO

• Regularly provide child and family with clear and honest information about diagnosis, prognosis, treatment and uncertainties surrounding the child's situation throughout the disease process. Match this information to their (language) abilities and needs.
• Use specific communication skills such as exploratory listening, acknowledging emotions, using concrete, appropriate and clear language, and formulating value-based goals during ACP conversations and shared decision-making.
• During ACP conversations and shared decision-making, consider the communication preferences and cultural, religious and philosophical beliefs of child and family (see also: cultural, spiritual and religious support). 
• Be aware in your preparation and during ACP conversations and shared decision-making that these discussions can be perceived as very difficult by the child and family. Do this by exploring child and family attitudes toward ACP and responding empathetically to their emotions without making the emotions the focus.