You are admitting a 13-year-old girl, Fatima with a history of easy bleeding and bruising, a full blood count has been performed and shows pancytopenia with blasts cells seen on blood film. The parents had been waiting in ED for 7 hours and the nursing staff tell you they are very angry at being admitted as no one has explained why they have to stay. They have a 3-month-old baby who Mum is breastfeeding. The family are asylum seekers from Libya and mum speaks some English, but the dad doesn’t speak any English.
When on rotation in haematology 2 years later, you meet the same family in the outpatient clinic for review, unfortunately, Fatima’s leukaemia has relapsed and the team looking after her have told them that a cure is not possible.
Bad news has been defined as any information that negatively alters a patients view of their future (Buckmann, 1984). All bad news has serious consequence for a family. As paediatricians, we must explain many life-changing diagnoses to children and their parents; from a new diagnosis of diabetes, a neuromuscular condition or an autistic spectrum disorder. Changes in management can also be bad news for that child or family, for example, a neonate who may require a tracheostomy or a child diagnosed with an unsafe swallow who cannot be fed by mouth.
We must skillfully navigate the triangular relationship between healthcare professionals, parents and children. Timely, open and honest communication is key, and families report that this is especially important for conditions with extremely poor prognoses.
Bad news is always bad news for the family; however, how we deliver it can make a drastic difference to the family and the therapeutic relationship they have developed with the healthcare professionals caring for them and their child. That bad news may be the start of the doctor-patient relationship, making it important to be honest to build a trusting relationship. Being honest whilst maintaining hope requires a delicate balance.
The SPIKES model
The SPIKES model has been proposed to give a framework for discussing bad news with families. (The oncologist, 2000). This framework can help us to structure the conversation and think about issues that may arise.
It begins by setting up the interview. Again, the need for preparation is paramount, gathering as much information as possible and ensuring that the conversation will not be interrupted. Many parents stress that diagnostic uncertainty shouldn’t delay important conversations and that we should be honest about what we do not know.
Think about what you want to say in advance. Think about how you can explain medical terminology in simple terms or whether there are any diagrams or pictures that might help. If any scan pictures are available, these also can be helpful in explaining a diagnosis, although be mindful that some families may not want to see these early on.
If a family need to come up to an outpatient clinic for review, try to be flexible to ensure that both parents can be there. Stressful events can strain already tricky family dynamics, so consider this with separated parents or with limited support. For example, they may have jobs that are difficult to get time off from, other children to arrange childcare, other caring commitments or difficulty with travel. Other family members such as grandparents, aunties or uncles may provide invaluable support.
These conversations can take time and in busy clinical environments this can be tricky. Whilst it is important not to unnecessarily delay difficult conversations it is also essential that you allow enough time so that the child and family do not feel rushed. Choosing the right environment would involve a place that allows privacy, has enough chairs and ensuring that you are not carrying any bleeps or expecting important phone calls. When to involve the child in the discussion is difficult and very age dependent. It is often appropriate to have a relative or member of staff sit with the child initially and then have subsequent conversations with the child. These conversations are obviously very difficult but for older children it is important that they understand what is happening in an age appropriate manner. Charities particular to the condition being discussed often have excellent resources to explain complex diagnoses, or provide story books for children or their siblings.
Open the conversation with introductions, including names and roles, bearing in mind that names are easily forgotten, so an easily visible name badge is helpful. Kindness and empathy are two fundamental principles in developing rapport with the family. Asking the parents their names and using their names and the child’s name can also help build rapport with the family.
Begin with open-ended questions to assess the family’s understanding and perceptions of what might be happening. This can be very different to what you may expect and may help in your explanations of the situation.
The next step in the SPIKE model is obtaining patients invitation i.e. getting an understanding of what they want to know. This is slightly controversial, as we must also ensure that families are informed about all aspects of care. However, for initial conversations it could be best not to overload with information. Giving a warning such as ‘we wish we didn’t have to tell you’ before breaking the news is advised.
After the news has been broken, do not be afraid of silence, you must give the patient time to process what they have heard. After the initial news has been broken, give more information on the condition and explanations of what will happen next and reassurance of ongoing support. Be open about uncertainties if the diagnosis is not your area of speciality but be clear about how questions can be answered. Give further information in chunks checking understanding of complex medical terminology to help develop family’s understanding of complex scenarios. If news is related to life limiting conditions statements such as ‘we are unable to cure your child (use name) but we will always care for them can be helpful.
Listening to what the family is saying and do not make assumptions about how they are going to feel. Be careful to really observe and validate their emotions, using empathetic language to respond to emotion rather than facts. No response from the family is wrong. Taking conversations at the individuals pace, bearing in mind 2 parents understanding may differ drastically.
Understanding their previous experiences and understanding of the condition can be very insightful; for example, the grandmother’s diagnosis of breast cancer is different to his child’s diagnosis of leukaemia.
Think about other family members and what to do when the consultation has ended, some parents report not feeling safe to drive after hearing bad news. Offering a few minutes in a quiet room after the conversation may be appropriate. Ask about other siblings and close family members. Offer support and advice about telling siblings, the child themselves or grandparents. Charitable organisations related to the condition often have excellent resources around this.
Finish by summarising the information that has been given, provide written information and website links and importantly follow up plans.
A lot of families will do internet searches on the condition, and whilst this can be helpful, it sometimes isn’t. It is helpful to acknowledge this and encourage families to discuss any information they find to be confusing or contradictory to medical advice.
Encourage families to write down questions for meetings. Explain that it is normal not to remember a lot of what has been said and that it is important to ask questions to develop their understanding.
Reassurance of ongoing support is paramount, this support may be from medical, nursing or allied health care professionals. Parent groups and charities often have excellent information leaflets and support groups. Ensure families know they are not alone and how to access support.
As clinicians, we must recognise that doing this well is emotionally and physically draining. We must look after our wellbeing and take time to debrief with the team if appropriate.
1. Brouwer, M.A., Maeckelberghe, E.L., van der Heide, A., Hein, I.M. and Verhagen, E.A., 2020. Breaking bad news: what parents would like you to know. Archives of Disease in Childhood.
2. Baile, W.F., Buckman, R., Lenzi, R., Glober, G., Beale, E.A. and Kudelka, A.P., 2000. SPIKES—a six‐step protocol for delivering bad news: application to the patient with cancer. The oncologist, 5(4), pp.302-311.
3. Together for short lives. Core Care pathway. https://www.togetherforshortlives.org.uk/resource/core-care-pathway/
4. Children’s Cancer and Leukaemia group. https://www.cclg.org.uk