End of life care in Paediatric Intensive Care Units (PICU) is a very difficult process for children, carers and healthcare professionals. Good decision-making and communication is essential. Though Trust DNAR forms are devised to be communication tools, they are inappropriate for PICUs. We devised an Agreed Limitation of Treatment Form (ALT) for professionals caring for children for whom a decision has been made to withdraw or withhold life-sustaining treatment. We have been using it for 5 years. Recent changes to national guidance have prompted us to review our practice.

Aims To evaluate our Limitation of Treatment process by reviewing our current practice, comparing it to professional guidance and to practice in other PICUs.

Method We compared children for whom an ALT had been completed to children who died without an ALT.

We reviewed each ALT form and the entries in the medical notes.

We obtained the opinions of staff on our PICU.

We reviewed practice in our PICU against the recent changes to professional guidance from the Royal College of Paediatrics and Child Health and the General Medical Council.

We surveyed practice in other units.

Results There were pre-existing severe or life-limiting conditions in 85% of patients with an ALT compared with 46% of those who died without an ALT.

13 out of 16 ALT forms were either not fully completed or not consistent with entries in patient notes.

Nursing and medical staff found the form to be useful as a communication tool but requested some changes to the wording and layout of the form.

Our practice is in line with National Guidance.

There is no uniformity among the different PICUs and only a few use forms.

Conclusion We found the Limitation of Treatment forms very useful and consistent with the professional guidance but the quality of documentation needed to be improved. We have made changes to our practice and would suggest that a similar document would be beneficial for all PICUs.