Background

Developmental and epileptic encephalopathies (DEE) are severe epilepsies characterised by frequent seizures. Outcomes are poor, with high rates of refractory epilepsy, developmental impairment, additional comorbidities, and mortality. 

Aim: 

To better understand the palliative care needs of families.  

Methods: 

In order to understand the lived experience, a virtual roundtable was held with caregivers of children who have a diagnosis of a DEE. Invitations were extended via social media and email.  

There were six participants across four different DEE diagnoses

The discussion focused on:

1.     What resources are needed?

2.     What services are needed that are not currently available? 

3.     What needs to be changed in paediatric palliative care?

4.     What would you like to tell other families experiencing paediatric palliative care?

 

A thematic review was undertaken from the roundtable identifying key gaps in access as well as barriers. 

 

Results: 

Key themes emerged impeding families from utilising palliative services.

Receiving a diagnosis is devastating. Many are life-limiting, and most are life-threatening due to the nature of the seizures.  Importantly, a diagnosis does not connect families to complex or palliative care services. 

Participants expressed palliative care would look different for each patient. Lack of coordination and practical support impedes the caregiver to decide when they move in and out of palliative support. 

Families have numerous touchpoints with health services which become missed opportunities to discuss palliative care and provide a referral. Most DEE patients are in and out of hospital and indeed intensive care.  Parents of DEE often feel they are told to “go home survive and come back again”.  

Participants reported medical practitioners were reluctant to refer to palliative care highlighting a lack of understanding of the breadth of palliative care. A referral to palliative care is often parents driven after a long battle caring for the patient at home.