Shared Decision Making
Nurture Information Hub
Evidence
https://www.sciencedirect.com/science/article/pii/S1538544224000142?via%3Dihub
Chantal Y. Joren, Judith L. Aris-Meijer, A.A. Eduard Verhagen, John Lantos
Paediatric palliative care has grown immensely in recent years in the world. However, shared decision-making remains a complex process, especially in paediatric palliative care. In particular, a number of issues are priorities to improve the shared decision-making process and ensure high-quality paediatric palliative care for every child. Working on these priorities will improve shared decision-making and thereby enhance high-quality paediatric palliative care around the globe.
Education
Navigating the complexities of paediatric palliative care can be challenging and emotional for families. Shared Decision Making (SDM) is a collaborative process that ensures that you, as parents, are active participants in the decisions regarding your child's care at such a time. The principles of SDM can be applied at any stage of the illness journey.
What is Shared Decision Making (SDM)?
SDM is a complex process where healthcare professionals and families work together to make decisions about your child's medical care. It combines the medical expertise of the healthcare team with your intimate knowledge of your child's needs and your preferences for their care. The goal is to reach the best possible decision that aligns with your family’s values and goals and your child’s best interests.
Key Components of SDM
Information Sharing: Healthcare providers share comprehensive, understandable information about your child's condition, treatment options, and potential outcomes.
Deliberation: Both the healthcare team and your family discuss the options, considering the benefits and risks associated with each choice. This may require a number of meetings or conversations. Sometimes, decisions may need to made more quickly if the child’s condition is unstable and changing rapidly.
Decision Making: A mutually agreed-upon decision is made, respecting the preferences and values of your family.
Steps in the Shared Decision-Making Process
1. Preparation - Gather relevant medical information and reflect on your family’s values and goals for your child’s care.
2. Information Exchange - Engage in open and honest conversations with your healthcare team. Ask questions and express your concerns and preferences.
3. Options Exploration - Discuss all available treatment options, including their benefits, burdens, and implications for your child’s quality of life.
4. Deliberation -Weigh the pros and cons of each option with your healthcare team, considering what matters most to your family.
5. Decision Making - Reach a consensus on the best course of action, ensuring it aligns with your values and your child’s best interests.
6. Implementation - Put the agreed-upon care plan into action, with continuous communication and adjustments as needed.
Empowerment
Tips for Effective Shared Decision Making
Be Open and Honest: Share your thoughts, feelings, and preferences openly with your healthcare team.
Ask Questions: Never hesitate to ask for clarification or more information about your child’s condition and treatment options.
Express Your Values: Clearly communicate what is most important to you and your family in your child’s care. This could include spiritual, religious and cultural preferences but also extends beyond these.
Take Your Time: Do not rush decisions. It’s important to feel confident and comfortable with the choices made.
Seek Support: Lean on support groups, counsellors, social workers or psychologists who can provide additional emotional and practical support.
Shared Decision Making is a vital part of neonatal care (including paediatric palliative care), ensuring that your child receives care that is respectful, compassionate, and aligned with your family’s values. By engaging actively in the SDM process, you can help create a care plan that truly supports your child’s well-being and dignity, and your family’s needs. Remember, you are not alone in this journey—your healthcare team is here to support and guide you every step of the way.
Useful Links
Paediatrics & Child Health Division of The Royal Australasian College of Physicians
Paediatric Palliative Care
The European Foundation for the Care of Newborn Infants (EFCNI)
https://www.efcni.org/news/compassionate-care-for-sick-or-preterm-newborns-at-the-end-of-life/
Miracle Babies Foundation
https://www.miraclebabies.org.au/content/bereavement/gjspjs
PANDA - Perinatal Anxiety & Depression Australia
For When – Perinatal Mental Health and Wellbeing
https://forwhenhelpline.org.au/
Confirmation Content
Disclaimer: This publication by Miracle Babies Foundation is intended solely for general education and assistance and it is it is not medical advice or a healthcare recommendation. It should not be used for the purpose of medical diagnosis or treatment for any individual condition. This publication has been developed by our Parent Advisory Team (all who are parents of premature and sick babies) and has been reviewed and approved by a Clinical Advisory Team. This publication is not a substitute for professional medical advice. Miracle Babies Foundation recommends that professional medical advice and services be sought out from a qualified healthcare provider familiar with your personal circumstances.To the extent permitted by law, Miracle Babies Foundation excludes and disclaims any liability of any kind (directly or indirectly arising) to any reader of this publication who acts or does not act in reliance wholly or partly on the content of this general publication. If you would like to provide any feedback on the information please email [email protected].
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