Today is National Advance Care Planning Day in Canada and National Healthcare Decisions Day in the USA. In both countries, this day exists to inspire, educate and empower the public and providers about the importance of advance care planning.
Discussing issues around the end of life with adolescents and young adults is often difficult which results in these important conversations being delayed or avoided. However, research has shown that in many instances, these children think about these issues and do want to make their own decisions about their care and beyond.
Suzanne S. Toce, MD, a retired neonatologist from the Gundersen Lutheran Medical Center writes in the latest ChiPPs e journal (Issue-38) that Advance care planning is “a process by which goals of care are clarified, preliminary decisions are made, and treatment plans are developed consistent with the values and preferences of the child/parents.”
She goes on to say that advance care planning “focuses on living, no matter how long, and supports appropriate hopes”.
The process gives the child/parents a sense of control and an opportunity to ensure that the child, parents, and providers are “all on the same page.” Having a written advance care plan means that the important information can be disseminated to all current and future care providers.
Toce lists several advance care planning tools that are designed for and/or are used in the paediatric population, especially for children with life limiting diseases/conditions. A selection of these are listed below:
- My Wishes (the paediatric version of 5 Wishes)
- Voicing My Choices
- Respecting Choices/FACE (Family/Adolescent Centered advance care planning)
- POLST (an American legal document that varies by state)
The article by Toce, Implementing Advance Care Planning and Utilizing Advance Care Planning Tools, identifies the components of an
ideal tool for such planning, while recognising that any tool or document used for this purpose should be individualised according to the needs of the child and family.
In the same e journal, Jennifer Holler, Director of Children & Family Services and Covenant Hospice in Pensacola says “I am an advocate of the use of Pediatric Advance Directives. I believe the advanced care planning conversation is just as important for children as it is for adults.”
She suggests that those who work with children facing the end of life should open the door simply by asking the child the question, “What do you think is happening?” and goes on to say that in almost every case, “the child already knows they are dying; they are just waiting for someone to be open to the conversation so they can share their fears, questions, and worries. ”
To learn more about Advance Care Planning for children and families you can download this themed issue of the ChiPPs e journal here.
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