Dr Bob Phillips describes how decisions are made in children’s cancer care, and how it can feel when the choices aren’t so obvious
As clinicians, we know that from the moment we receive a referral right the way through treatment there will be choices to make - some of them straightforward, some of them complex. In fact, the teams looking after children with cancer have to make hundreds of choices every day.
But how do we make them? Well, we rarely make choices about recommending treatments alone.
When we have to make a decision, we do that by getting as much information as possible. For example, nearly all the diagnoses we manage have a solid grounding in high-quality clinical research - as the more we do and study something, the more chance we have of knowing what’s going to happen and our estimates being within a certain degree of accuracy.
In turn, this research is translated into guidelines through CCLG to clearly lay out the best options for 90% of patients. These guidelines often form the basis of our discussions in ‘MDTs’ – the multi-professional, multi-disciplinary team meetings where the diagnostic materials including biopsies and imaging are discussed and input is received. Together, we mull over the questions, and the information available, and make decisions.
For the one in 10 where the path isn’t clear, we have a national - and sometimes international - network of experts to guide and support us.
What do we do if we need to know how to manage a child whose brain went a bit foggy after methotrexate? We might ring Chris. What if we’re unsure if the kidney tumour can be treated with nephron-sparing surgery? We look for when the next CCLG-organised national advisory panel is... we can get input from there. And if we want to find out what’s the current third-line therapy for soft tissue sarcoma and what trials might be available? We’ll perhaps ask Julia, or Lindlay.
It’s almost never that we have a question which can’t be aided by input from our colleagues, locally, within CCLG, or further away with our global connections. I often find that the really difficult choices are when they aren’t clear, and the views on which is correct, clashes.
Decisions about treatments, or not undertaking treatments, are in collaboration with families and patients, too. There are times when the experts in a field talk of huge uncertainties, and recommend different actions. There are harder times, when parents and young people disagree on what might be the right things to do. It’s our job to be able to help facilitate those conversations, and it’s hard to stop our own preferences from falling accidentally from our mouths and swaying things unfairly. Some of us see a new drug full of promise, others see an untested therapy with unknown harms
And then there are the times we’ve had those conversations where, knowing it’s the honest decision of the family, believing their conclusions were reached with fair thinking and clear reasoning, where you wouldn’t have made that choice. Or when a perfectly understandable choice is made but is one which makes your heart ache.
As professionals, many of us know these aches and feelings. But we should remember that the stressful conversations and difficult decisions that must be made in caring for unwell children all amount to achieving the one goal. And that’s to get those children better.
Dr Bob Phillips is a consultant paediatric oncologist at Leeds Children’s Hospital and CCLG member.
