Getting end-of-life care right for the child and the family

Categories: Care.

Three years ago I was employed two days a week to do mainly two things:

  1. Support families after their child had died within the hospital and help them with the Child Death Review Process (CDRP).This is a great process if used in a positive way for the family and the health care professional. Find out more about this process here.
  2. To try and prevent children ending up on the Paediatric Intensive Care Unit (PICU) inappropriately. By that I mean families are offered realistic choices by being supported to have conversations early on with healthcare professionals by the use of our ‘Wishes template’. This is a template for a conversation and not a form to be completed. You can find this document here.

What came to light from both of these processes was that we did not manage end-of-life care (EOLC) very well. Therefore, working with feedback from families and staff, we have developed guidance for the care of children dying in hospital or whose care may be transferred to a preferred location for EOLC. The first part of this work was to develop what we have called a ‘high level pathway’ and this has been key in helping professionals to identify and think about what the realistic choices are before approaching the parents to have a conversation about EOLC.

The second stage was to take all the ‘best practice’ identified within the various care pathways and to convert this into an accessible format for staff on the wards. This takes the form of 6 sub-sections that look at:

  1. EOLC on the Ward. 
  2. EOLC at Home. 
  3. EOLC at the Hospice. 
  4. Extubation in a different location. 
  5. Symptom Control. 
  6. Discharge Checklist. 

This is set within a simple framework which is about thinking about:

  1. What do I need to have in place before the child dies? (This will vary depending on preferred location of care)
  2. What do I need to have in place for the time of death?
  3. What do I need to have in place for after the death?
  4. Identify who is best placed to do the family follow-up after the death?

I have used this framework for many years within my clinical practice and it helps focus the mind in sometimes very stressful situations. As has often been said, we only get one chance to get this right for a family. I would add to this that if we want staff to continue delivering this care we need to support them in the providing of it.

The guidance is not a clinical decision making tool but an aid to planning timely and coordinated care. You can find a copy here

The driving philosophy underlying this work and all the work that I do is that families and staff are left with a ‘good enough’ memory. This means that we do all that we can to help families process and understand what is going on, giving them realistic choices and involving them. It means giving the staff the tools and information they need when they need it and supporting them as they deliver EOLC.

My model of working has come out of the challenge of working only two days a week – just how do you do that? It’s about empowering families and staff, and not taking over and managing expectations. It is about seeing palliative care as a positive option that needs to be everyone’s business and needs to be reintegrated into everyday care on the ward, with the support of specialist support. After coming into post I changed my job title from child death nurses to Liaison nurse and I would say I am the person that supports the staff by the bed and not the person that does it.

There is clearly more to delivering EOLC in a children’s hospital and this is just a start. Creating the tools for staff is great. By empowering the staff you will see better care being delivered at the bedside.

Francis is in the very privileged position of working in an acute setting in Bristol and at Ty Hafan, which is a children’s hospice in Wales, UK. In the past he has also worked in a community setting, so he comes to this work with a wealth of experience.

You are welcome to correspond with Francis via email at

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