At Sands we know that one of the most difficult conversation parents and doctors have on neonatal units is about starting end of life care.

To help doctors in this important area, we funded The Parents and Neonatal Decisions (PND) research project, which has led to the development of a two-day training course.

A team of researchers led the advanced training pilot event at the Queen’s Medical Centre in Nottingham, to help doctors support parents and have better conversations about the decision of changing from full intensive care to palliative care to make their baby as comfortable as possible at the end of their life.

Leading discussions with parents about the redirection of treatment for their newborn baby, including the withdrawal or withholding of care can be extremely challenging for parents and doctors, which is why the training is essential for doctors working in the area of neonatal care.

How doctors handle these situations is usually based on their own experience or on training that involves sitting in on conversations more experienced doctors have with families.

The Parents and Neonatal Decisions (PND) research team, led Professor Neil Marlow, has been studying the process of decision making, to identify how doctors effectively involve parents in end-of-life decision making for the past five years. 

The team recorded real conversations between parents and doctors and analysed them using the method of Conversation Analysis. The findings were used to create this training to help doctors to understand, communicate and support parents during these difficult conversations.

Engaging parents in this process is crucial, so that the choices of the family as a whole are taken into account.

Kate Mulley, our Director of Research, Education and Policy, said: “We are delighted to have been able to fund and support such an important project that will make a huge difference to both parents and doctors who specialise in neonatal care.”

The workshop carefully addressed the challenges for both doctors and parents. Bereaved parents shared their experiences of decision-making while being filmed, so their stories were heard. 

Doctors attending were assessed with pre and post evaluation forms on ability and confidence on different components of introducing end-of-life decisions. There was a statistically noticeable and significant improvement in scores for all 10 questions, when comparing pre and post training scores.

Click here to find out more about the Parents and Neonatal Decisions Study to improve communication with parents and doctors.

Click here to find out more about our current research studies and projects and discover more about our training opportunities for healthcare professionals.