Parents and Neonatal Decisions Study: Improving communication during conversations about limiting life-sustaining treatment in neonatal intensive care

Lead researcher: Professor Neil Marlow, UCL Elizabeth Garret Anderson Institute for Women’s Health, London

Sum awarded: £93,865.55

Other funding: None currently – pilot work was initially supported by a National Institutes for Health Research grant

Duration of study: 3 years, starting Sept 2017 (PhD studentship)

The most challenging conversations between doctors and parents occur happen when it becomes clear that there’s a risk that a sick baby will die or survive with very severe disability. As a result of these conversations, a decision may be made to change from full intensive care to palliative, or end of life, care.

Why is this research needed?

The research team know from parents that these first conversations can remain with them for the rest of their lives. Research in this area is often carried out a long time after the conversation and recollection is affected by what happened. This can make it difficult to find out how best to improve support for parents when doctors first approach them to discuss moving towards palliative care for their baby. The team also know from their research that these first conversations may often go very wrong and become what they call ‘misaligned’, with the parent and the doctor taking very different views of what is the best thing to do. Sometimes this leads to outright disagreement, which adds unnecessary distress to parents already going through an extremely traumatic time.

Professor Marlow and his team have also found that how doctors handle these situations is usually based on their own experience or on training that involves sitting in on conversations with more experienced doctors and families. In a survey of young doctors in 2014, most wanted further training in these conversations and breaking bad news, and one in six had not received any proper communication training.

The medical governing bodies tell doctors to explain to parents that they are making a recommendation based on the medical team’s agreed opinion and to focus the discussion on what course of action is in the baby’s best interests. The team have used recordings of real conversations between doctors and parents to identify different ways in which doctors introduce the possibility of changing to palliative care. They found that using recommendations and a ‘best interest’ approach early in conversations often led to a breakdown in the conversation.

What the researchers will do

The research Sands is funding is designed to improve the way doctors talk with parents about the decision whether or not to start palliative care for babies who have life-limiting conditions or a poor outlook. First, they plan to add to their set of recorded conversations and use these new conversations to ensure that the classification scheme they have for assessing the conversations between doctors and parents is valid. This is important as they have so far managed to record conversations in two neonatal services and would like to expand this to include two further units over the first 12 months of the study.

During the remainder of the study, they will use these conversations as part of a training package designed to improve the confidence and understanding of doctors in approaching the subject with parents. The package will consist of two workshops and an on-line programme (called an e-portfolio) designed to help individual doctors reflect on conversations. They will measure the effect of the training programme by asking the participants to record conversations before they start and then some time after the training has happened. They will then use the classification scheme to show whether or not the training has led to better and more parent-focused conversations. As a pilot, the team has run one workshop which was very well received by the doctors who attended and showed an improvement in their confidence at approaching these conversations.

The team has been supported by an active Parent Advisory Group, including parents who themselves have had such conversations and have had to make challenging decisions for their own children. Having such insight ensures the project maintains its focus on the long-term wellbeing and outcomes for families. The parent advisory group is supported by Bliss, Sands, Child Bereavement UK and Together for Short Lives, all of which have experience in understanding the communication challenges of a neonatal service. It is also relevant to the content of the professional training programmes that they run. Better communication when first discussing palliative care will benefit families, improving their feeling of support in the very difficult decisions they have to make, and reducing conflict with the medical team looking after them and their baby.

What we expect from the study

The development of a high-quality training programme that will help doctors have better conversations with parents about changing from treatment in order to try to prolong life to palliative care to make their baby as comfortable as possible at the end of their life.