Breaking bad news

Cite this article as:
Sarah Kapur. Breaking bad news, Don't Forget the Bubbles, 2021. Available at:
https://doi.org/10.31440/DFTB.31906

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.  

This case highlights communication when breaking bad news about a new oncological diagnosis, however the skills and themes discussed are relevant to many specialities and scenarios.

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 have to skillfully navigate the triangular relationship between healthcare professional, parent and child.  Timely, open and honest communication is key and families report that this is especially important for conditions with extremely poor prognosis. 

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, in order to build a trusting relationship.  Being honest whilst maintaining hope requires delicate balance.  

The SPIKES model

The SPIKES model has been proposed to give us 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.  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 parents who are separated or who have limited support. They may have jobs that are difficult to get time off from, other children to arrange childcare for, 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 2 key 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 going on.  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 grandmothers 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 recognising that doing this well is emotionally and physically draining and be sure to look after our own wellbeing and take time to debrief with the team after if appropriate.

Selected references 

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 oncologist5(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

Parental Grief: Liz Crowe at DFTB18

Cite this article as:
Team DFTB. Parental Grief: Liz Crowe at DFTB18, Don't Forget the Bubbles, 2019. Available at:
https://doi.org/10.31440/DFTB.20208

Grief is complex and individual. It would be foolish to expect everyone to respond in the same way. Everyone is different. Just like there is no such thing as a normal sense of humour, there is also no such thing as normal grief.

Andrew Weatherall: Breaking Very Bad News At DFTB17

Cite this article as:
Team DFTB. Andrew Weatherall: Breaking Very Bad News At DFTB17, Don't Forget the Bubbles, 2017. Available at:
https://doi.org/10.31440/DFTB.13482

This talk was recorded live on the second day of science at DFTB17 in Brisbane. If you think you have what it takes to speak at DFTB18 then get in touch at hello@dontforgetthebubbles.com.

Trethewie on death in the acute setting

Cite this article as:
Davis, T. Trethewie on death in the acute setting, Don't Forget the Bubbles, 2016. Available at:
https://dontforgetthebubbles.com/pac-trethewie/

We have teamed up with APLS to share the videos from their Paediatric Acute Care Conferences. These videos have never been open access before, so if you weren’t able to attend the conferences, then now’s your chance to catch up.

The PAC Conference is run each year by APLS and consists of presentations on a range of topics relevant to paediatric acute and critical care.

Making sense of death in paediatrics

Cite this article as:
Annabel Smith. Making sense of death in paediatrics, Don't Forget the Bubbles, 2016. Available at:
https://doi.org/10.31440/DFTB.8834

Per unitatem vis – ‘Through unity, strength”…

A patient died in our unit last week. A child. His parents were two of the loveliest, bravest souls I’ve ever encountered. I looked after him on a series of night shifts. He deteriorated, slowly but surely, over those nights.

I found it hard to look after him. When he became agitated, he’d settle if his hair was stroked. His parents did it if they were around, but on nights they took the opportunity to sleep, and so the task fell to us, his doctors and nurses. As I stood there by his bed, stroking his hair, I couldn’t help but think about how hard this was for me. Then I’d admonish myself, thinking how much worse it was for his family, let alone for the little boy himself.

He died during the day, so when I came on again for my last night, he was gone. The staff were shaken. The handover process was subdued, and prolonged by some much needed general chatting and debriefing. We hugged, and we talked about all the patients we’d lost this term (intensive care has an unfortunately high rate of loss compared with my previous general paediatric jobs). We tried then to remind ourselves of the successes, and talked about patients who made us smile, and patients who’d made it through against the odds.

It’s often like this with difficult events. The juniors rally around each other as best we can, and sometimes there’s a debriefing session with seniors – not always though, which is sad. It’s a vulnerable time for all of us, particularly as doctors in training. I myself tend to feel overwhelmed with a sense of inadequacy for the job. Will I ever be smart enough? Skilled enough? Strong enough? For an occupation in which these are the stakes? I inevitably contemplate alternative careers at this point, for on the alter of my own self-judgement, I always come up wanting.

No wonder doctors quit, burn out, became depressed, even suicide. Every day in medicine we walk a tightrope, holding aloft the heavy burden of our patients’ needs, praying at every moment that we don’t all come crashing down together. If we make it to the other side, to the end of the day or the end of the shift, and all is still intact, we’re grateful, but we rarely acknowledge the strength it took to make that journey.

Doctors – medicine is brutal. It’s also wonderful, mysterious, joyful, and an absolute privilege to practise. A success can bring us to dizzying heights of elation, but every failure rocks us to our core. At times we’ll all feel like frauds, like failures, and like a change of career. The important thing is that it’s normal to feel that way. I believe many of the doctors who take their own life have an extremely misinformed concept that they are the only ones who feel lost.

When we lie to each other and say all is well all the time, this myth holds. There is great power instead in being honest with one another. In admitting that we don’t have it all together, and reaching out for help and support when times are tough. We must focus on a change in the medical culture in which no doctor is ever left to feel alone in their pain. If we don’t, we stand to lose much more than pride.