Child Bereavement UK has been funded by BMA Giving to produce this short guidance film to help support doctors working with bereaved families. Child Bereavement UK’s Medical Advisor, Dr Su Laurent, MBBS FRCPCH, gives guidance for doctors around providing sensitive support to families when a child is not expected to live. 

For doctors - when a child is not expected to live

Learning that their child is not expected to live is one of the most difficult things a parent will ever have to face. The death of a child brings with it the loss of a future, hopes, dreams and potential.

When is the right time to break the news?

When a child is not expected to live, families tell us they prefer medical professionals share this news with them as soon as possible, giving them time to process the information and consider arrangements for palliative care, making memories and other end of life issues. 

Delivering bad news

The first principle for doctors when communicating with parents should always be honesty; while it’s important to be supportive and helpful, avoid giving false hope - families need to be able to trust what’s being said. Clear communication in bite-size chunks - avoiding euphemisms and medical jargon - can help families to understand more fully and accurately. Be aware of your body language and how it might come across; for example, just shaking your head to indicate that things aren’t good, which could be confusing or upsetting.

Parents need time to digest what you’re saying so make sure you give them your undivided attention. Hand your phone over to someone else and avoid being rushed.

Check understanding

Even if you’ve tried to communicate clearly and unequivocally, families who are in shock may find it difficult to absorb the news. Some parents tell us they find themselves ‘switching off’ as they struggle with a diagnosis they don’t want to hear. This is natural and they may need you to repeat information later on.

It can be helpful to check the family’s understanding as you go along, giving them time to take in what you’re saying and its implications. You might say: ‘Is there anything you want to ask at the moment? or ‘Shall I carry on?’. It’s usually useful to have another professional with you, such as a nurse the family knows, or a bereavement support professional, both to support you in breaking the news, and to help with any questions, particularly after you’ve finished talking to the family.

How might a family react

Some parents describe feeling disbelief and extreme distress. They may also experience flashes of reality too awful to contemplate, or numbness and emptiness. They may feel angry - with themselves, their partner, medical staff or even with their child for being ill. Anger and the need to blame someone are common reactions and may also be combined with guilt, feeling that they were responsible for their child’s safety and should have been able to somehow prevent what happened or even because they will survive their child.

Fear is also a common response – fear of what the future will hold, that their child might suffer, and of how other people might react. None of these emotions is wrong and it can help parents to have someone to share these feelings with, such as a friend, family member or professional.

Helping families with difficult decisions

When a child is not expected to live, families will be faced with a number of difficult decisions and practical considerations. 

A major decision will be where their child will die. Some families may want their child to die at home, but this may not always be possible. As a medical professional they will need you to advise on the options, and the practicalities and the implications of their choice.

You may need to talk to the family about arrangements for post-mortem, what this means and how it might affect the funeral arrangements. Other considerations might include care of the child’s body, registration of the death and breaking the news to the wider family and community. 

It can help to follow up any discussion about procedures that follow the death in writing, so that the family fully understands what will happen and when.

Giving families choice

In the days leading up to a child’s death, a family may wish to make memories by spending time with their child, participating in their care where this is possible, taking photos together or perhaps making a memory box. When a child dies, some families may wish to take a handprint or a lock of hair.  What’s right for each family is deeply personal - the important thing is to make parents aware of the choices available to them without hurrying them.

Support for families

Parents are likely to need support from someone who can listen to them talk about the death of their child as they try to make sense of things. They may find this support among friends and family, but some people find it helpful to seek help from a bereavement support professional or a chaplain appropriate to their faith, if they have one.

Support for you

The impact of witnessing death, grief and dying cannot be underestimated. As a medical professional, your health and wellbeing are critical to the quality of care you’re able to provide. If you’re feeling ‘burnt out’ or negatively affected by your work, share your feelings with someone you trust, and seek help if you feel overwhelmed.

If you need more guidance on how to communicate with families when a child is not expected to live, or if you need support yourself, call our Helpline on 0800 02 888 40, email [email protected], or access Live Chat via this website.