Improving Communication for Neonatal Families When Making End-of-Life Decisions

The Royal College of Paediatrics and Child Health has today issued new guidance about “when it can be considered no longer in the best interests of the child to give life sustaining treatment.”

The new guidance has received prominent coverage in the national media, such as this article in The Telegraph.

Discussing not just the death of babies and children, but withdrawing treatment that prolongs only suffering and the inevitable is an emotive and challenging issue. I believe every child is valued and has a right to life. However, despite significant advances in medical technology some children, especially babies born extremely prematurely, will not survive despite extensive medical intervention. It is something that deserves more open discussion for the benefit of those directly affected by such impossible decisions.

As regular readers of my blog will be aware, the focus in the media of premature babies ‘success stories’ can lead bereaved parents to feel like they failed in some way. That is not true of course, as discussed in Five Reasons All Preemies Are Completely Inspiring.

Families directly affected by these decisions need better communication and support from clinical staff than is currently often provided. This provision needs to be considered in conjunction with the new guidelines.

The timing of the announcement is for me especially poignant because this Friday (March 27) marks one year since the death of my son Hugo. Hugo was born at 24 weeks because I had HELLP syndrome and pre-eclampsia, and lived for 35 days. Weighing just 420 grams at birth, the odds were very sadly stacked against him. While I sort of understood that, I clung on to hope, as mothers do. This was complicated by me not reading any information, because I was too ill and exhausted to take in the reams of leaflets and booklets we were given.

Hugo’s lungs were his main issue and despite every possible treatment being attempted and him receiving the best care, the decision was made by the clinical team to withdraw treatment. This decision was based on Hugo’s poor prognosis, and the fact that to continue treatment would prolong his suffering and give us, his parents, false hope. As it turned out, Hugo told us he had had enough, and he died in my arms later that day.

Hugo receiving a comfort hold from me.

Consideration for improving communication with parents in making end of life decisions on a neonatal unit include:

• First and foremost, how the news is given. It is news no parent ever wants to hear, but the way I was told – in the Grand Round, with me on the floor sobbing and hyperventilating – was traumatic, unkind and lacking in compassion. I have written about it in more detail in this post.
• Ensuring parents are given information about their baby’s care that is easy-to-understand and digest, at the first available opportunity. Consideration needs to be given to the fact that one size never fits all, and that stressed, tired, and emotional parents will find it difficult to absorb information. Parents also need to know how to access other sources of reliable information, that there is no such thing as a ‘stupid question’, and how to get in touch with relevant staff when needed.
• When a baby dies, making sure the parents have the opportunity to get all mementoes they might like, including foot and hand prints, a lock of hair, and photographs for example. It is vital to remember that parents might not know what is possible, so they will need to be gently guided by staff.
• Information about coping with bereavement, again in a way that is easy-to-understand and digest. The information should include details on how to get in touch with the hospital with any further questions, and how to access relevant support. This relevant support can, of course be difficult to find, and frustratingly can depend on what is available in your local area. It took months of upset and tenacity for me to find the support I needed – most quite clearly did not have a clue about what to do with me.

Note: I have designed a simple information poster for neonatal parents, and a succinct bereavement card for St George’s Hospital, where Hugo was cared for. Please do get in touch if you would like to discuss using them in your hospital.

Best Beginnings’ Small Wonders films are also an excellent resource.

Gorgeous Hugo

Consideration for postnatal care includes:

• Postnatal inpatient wards to recognise that the needs of mothers of babies who are being cared for in the neonatal unit (or do not survive) are different to those of the babies who are with them. This did not always happen in my experience, and I am aware other mothers in a similar situation shared these frustrations.
• The relevant services to make sure women whose baby is in the neonatal unit (whether or not they survive) receive all the postnatal checks that they would have if all had gone ‘to plan’. Too many women in this situation miss the usual checks and may fall through the cracks, creating another hurdle between them and the help they need.

I am fully aware that NHS resources are stretched to their limit. However, many of the improvements above require staff to just think differently. Be human. To think about how they, or a member of their family would like to be treated. To remember that the smallest gestures can often mean the most to a patient’s experience.

Mummy, Daddy, and Hugo