COVID-19 and brain cancer: golden opportunity or burning platform?
‘The whole country is now facing a scary “new normal” which has weirdly made me feel stronger as my own condition has paled into significance, and we are all getting through this surreal time together.’ Colin, brain cancer patient, April 2020
Helen Bulbeck (director of policy and services for brainstrust) and members of the Cochrane Consumer Executive reflect on what the latest Cochrane evidence on brain tumours has meant for the brain tumour community while living in a pandemic. The top note is that there is so much we can learn from the brain tumour community about resilience and developing the ability to thrive.
These two phrases, ‘golden opportunity’ and ‘burning platform’, describe two different approaches to telling the same story. The first describes the incredible potential that NHS England can realise by transforming itself to meet growing demand during the COVID-19 pandemic, so that change for good can be a lasting legacy. The second phrase refers to the challenges that this pandemic has wrought and a potential downward spiral that can only be arrested if the NHS transforms itself to correct the problems.
Both stories are true, and both are intended to create the same outcome: supporting a painful and difficult transformation. Yet they can create very different impressions that the media is all too quick to report. There is always more than one version of the truth. The bottom line is that across all cancer services in England, 85% of treatments were delivered. A data release at the height of the pandemic shows that under the two-week wait (2ww), on average, between April and June 2020, 95% of people diagnosed with a brain tumour were seen within the recommended 2ww guideline. This rises to 97.9% of patients being seen within three weeks. Given the pressure on the NHS during this pandemic, we think that’s a pretty good outcome.
But behind the data is the lived experience. There is so much at play – so much that we, as consumers of healthcare, need to make sense of. There is data: scientific and real-world. Then the media spin and colour this brings, along with so many biases, assumptions and beliefs. It’s a heady mix and one that is open to many interpretations. It is for this reason that the data needs to be humanised. There is no story without the patient.
So, what has the impact of COVID-19 been on people living with a brain tumour? Throughout the pandemic we have been aware that people living with a brain tumour have responded in one of four ways. They have:
• Succumbed: been overwhelmed and required intensive support.
• Survived: but with impediment; they have been hurt by the experience.
• Recovered: these people have bounced back, they say they are fine, but they are not thriving.
• Thrived: have gone beyond where they were before; the crises and changes they have made have enabled them to flourish.
We’ve explored the key traits of those who have flourished despite COVID-19 and despite living with a brain tumour. This is what we have learnt from Colin, diagnosed with a life-limiting brain tumour (a glioblastoma) on 28 January 2020. His COVID-19 experience has been defined by his diagnosis, which has an average prognosis of 14 months, with treatment. Colin is 56 years old, fit, active, married with three daughters and four grandchildren. He has followed the standard protocol for treatment and had a recurrence of his brain tumour in January 2021. The launch of the Cochrane Neuro-Oncology special collection in March 2020 was timely. Colin was at a point when he was able to process information, and he wanted to make decisions about his treatment pathway based on the best evidence.
Throughout the last 18 months, Colin has focused on the maintenance of wellness, not treatment of illness. He has, through coaching conversations that have involved looking at evidence-based healthcare, understood the risk versus benefit, has set short- to mid-term goals that are agile and adaptive (he visits them often), is open to change, savours positive emotions and healthy relationships, finds workarounds to problems, has meaning and purpose, ignores the media and never says he is fine (this is for another blog – there is a problem with ‘fine’).
We looked, with Colin, at what he has in his toolkit that has enabled him to thrive. Underpinning everything is his coaching relationship with brainstrust. This has created a more meaningful dialogue at every touchpoint, enabling him to develop insights and bring clarity and purpose to his situation. Coaching has unlocked Colin’s desire to have his best possible day, every day, and to do this he has embraced evidence-based healthcare and shared decision-making – the two are interdependent.
Colin knows that shared decision-making and weighing pros and cons of whether to treat, or not treat, helps people to reframe problems, generate insights, shift dynamics, and change practice. He knows that these decisions need to be based on the best available evidence. If we ignore the patient voice, we have a disconnect between the epidemiology of disease (clinicians) and the epidemiology of healthcare (patients). Our experience is that researchers and clinicians sometimes focus on overall survival or progression-free survival; patients focus on quality of life, function, and symptom relief. Using shared decision-making allows everyone to become co-pilots in their care, so that we see a new model of maintenance of wellness as well as treatment of illness.
We may feel better believing there is one single truth and thinking everyone who doesn’t see things the way we do simply doesn’t have the truth, but that’s not true. Everyone has a lens on the situation that’s coloured by what they want, how they see the world, and their values, attitude to risk, context and biases. This is never more apparent than when you are living with a brain tumour. The one truth we have learnt from this pandemic is that there are multiple truths and that these come in many forms. For some it is a burning platform; for others it is a golden opportunity.
Useful links
https://www.cochrane.org/news/special-collection-brain-tumour-diagnosis-and-management
https://brainstrust.org.uk/cochrane-special-collection-launch/
Disclaimer
The views expressed in this this World EBHC Day Blog, as well as any errors or omissions, are the sole responsibility of the author and do not represent the views of the World EBHC Day Steering Committee, Official Partners or Sponsors; nor does it imply endorsement by the aforementioned parties.
