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Paediatric Neuropalliative Medicine - Providing Holistic Care To Families

Administrator: Viraj Sanghi

Clinicial Vignettes in Paediatric NeuroPalliative care
Viraj Sanghi

Paediatric neuropalliative care plays a vital role in enhancing the quality of life for children with life-limiting neurological conditions, as well as their families. Palliative Care aims to improve their quality of life by addressing physical, emotional, social, and spiritual needs. In this talk, the importance of early referral to neuropalliative care and the need for interdisciplinary collaboration in providing such care will be explored.Clinical cases will be used to illustrate the challenges faced by children with life-limiting neurological conditions and how neuropalliative care can help address these challenges. Through these cases, we will demonstrate how neuropalliative care can help manage symptoms, provide comfort care, and support families during end-of-life journeys.
In summary, this presentation will  aim to raise awareness of the importance of neuropalliative care for children with life-limiting neurological conditions and to encourage healthcare providers to consider early referral to neuropalliative care as part of a comprehensive approach to care for these patients and their families.
 

Permissibility vs Advisability : Clinical Decision making with Families – A Practical Framework
Lauren Treat

Paediatric neurologists commonly have an active role in supporting families through decision making in the clinical setting.  In the modern era of deference to patient / family autonomy, clinicians may feel reluctant to provide direct opinions about the appropriate course of action for fear of communicating bias or pessimism.  In this presentation, a paediatric  neurologist with dual-training in paediatric palliative medicine will outline a practical framework for classifying medical interventions according to both their degree of ethical permissibility as well as their degree of advisability given the clinical context. This framework will then be applied to common circumstances facing patients with chronic or acute serious neurological conditions or life limiting illnesses in childhood. This talk will thus provide the audience with the tools required to assist families navigate the challenges they face when caring for a child with life limiting illnesses and will include clinical scenarios and examples from clinical settings to achieve its objective.

 

Avoiding and Managing Conflict in the PICU
Peter Sedgwick

Working with families to avoid conflict in the PICU is an important aspect of providing care to patients with life limiting illnesses. This is a case based presentation of approaches to building relationships with the parents and carers of children admitted to PICU with neurological disease or injury.

Conflict can arise from a variety of sources, including differences in opinions, values, and goals among healthcare providers, patients, and their families. Such conflicts can lead to negative outcomes, such as stress, decreased job satisfaction, and compromised patient care.
In addition, establishing clear guidelines and protocols for decision-making can help prevent conflicts from escalating. Healthcare providers should engage in shared decision-making with patients and their families, considering their input and preferences in the care plan. This can help prevent misunderstandings and ensure that everyone is on the same page.

The changing patient population and shifts in the socio-political landscape mean that those caring for children in the PICU are increasingly having to refresh their approach to planning for patients with life limiting neurological disease, and communicating with their parents and carers. 
This session will propose a practical tool-kit for clinicians to minimise the potential for conflict and to consider responses to it when it is unavoidable.