While not a phrase anyone would want to hear from their healthcare professional, Elise Lang and colleagues suggest there are ‘good ways’ to share such news and to discuss prognosis in a way that is supportive to those affected by cancer and their relatives. For today’s blog, Elise, Gemma Eccles and Eleri Girt explain why doing this well matters.
‘A total shock, completely unexpected and something that happened to others. I have worked in cancer care for most of my working life but now I wasn’t me ‘the healthcare professional’, I was the same as everyone else who had sat in that seat hearing those words and then not hearing anything else. I couldn’t think of any questions to ask.
A nurse by background and having responsibility for patient engagement and experience in the Wales Cancer Network since 2004, I was diagnosed with breast cancer in 2019. Having also supported my mum, as her primary carer, during her brief battle with brain cancer, I unintentionally acquired a three pronged experience to communication around cancer diagnosis and prognosis.
Accompanying Mum to her diagnostic and treatment discussion appointments was heart-breaking. Mum was told with compassion about her diagnosis BUT the discussion about treatment was the polar opposite: a small poky room with computer screen facing the door with a scan picture showing the tumour up on the screen. The Consultant was abrupt and offered her no treatment options, nor did they refer her to palliative care. There was no care, no compassion, no support, no information – just instructions to make an appointment in six months’ time (she died within two months).
My diagnosis was through breast screening. A letter recalled me for a repeat mammogram and my husband attended with me, sitting blissfully unaware in the waiting room of what was going on for over three hours. I asked whether anyone had been to speak to him. The surgeon’s attitude seemed blasé; the consultant radiologist was not: she showed me the mammogram images, explained the reason for the three biopsies and explained the extreme likelihood of surgery; she put me at ease. I returned a week later for the results. I was called through – I had to ask could my husband come with me. I heard ‘cancer’, ‘invasive and ‘a second cancer’- I remember little else.’
We can do better
In 2021, as a multidisciplinary primary care team working to improve care for people living with cancer in Wales, we were tasked with exploring communication around cancer prognosis, and in particular to consider the words used. We held a series of workshops with those affected by cancer, like Eleri, and with clinicians from across the country – we heard difficult and inspiring stories of conversations around cancer diagnosis, and prognosis being done well, and poorly. It quickly became apparent that needs were different; for clinicians, accurate and consistent language was felt to be crucial when communicating with colleagues. However, when speaking to those affected by cancer, it became clear that their needs were much greater than just the right language being used for them.
“Something that struck me was that many people didn’t ‘see’ me. It did feel like the old cliché of being on a conveyor belt and that I was just ‘breast lumps’ that needed removing and then moving along. But I’m not, I’m me: a wife, a mum, a grandma, a sister, a friend, a colleague, who loves history, sewing, chocolate cake and The Proclaimers 😊”
Together with the people attending the workshops, and supported by Macmillan and the Wales Cancer Network, we worked to distil both the positive and negative experiences our attendees had reported into a simple but powerful set of guidance. In March 2022, we launched the Macmillan Ten Top Tips for Sharing Cancer Prognosis.
The Ten Top Tips document is a common-sense approach, there is unlikely to be anything surprising in the advice. However, our workshop experiences reinforce that when these conversations are done well, they really do enhance patient experience but perhaps more importantly, when they are not done well, there can be increased uncertainty and unnecessary distress at an already difficult time. As Eleri says,
‘I absolutely support the Top Ten Tips. It shouldn’t be for the patient to know what to do, or what to ask, or how to ‘be’ when they are having that life changing conversation (and it absolutely is) around the fact they have cancer. Whether or not the cancer is completely treatable, or not, the word has been used and life will never be the same again.’
The people affected by cancer who kindly gave their time to support this work have made an impact on our everyday clinical practice and for that we are very grateful, and hope that in reading this, it may impact on yours too.
Links and resources
- Click here for the Macmillan Ten Top Tips for Sharing Cancer Prognosis.
- There is a bite-size video explaining this work, useful for training as well as for information.
About the authors
Eleri Girt is the Patient Engagement and Experience Lead with the Wales Cancer Network and was treated for breast cancer in 2019, following a diagnosis through screening.
Dr Elise Lang is a General Practitioner (GP) partner in Cardiff and interim Primary care lead for Wales cancer network, GP lead for Velindre Cancer Centre and Macmillan Clinical Advisor for Wales. Twitter: @DrEliseLang.
Dr Gemma Eccles is a GP currently working as the Primary Care Clinical Lead for Cancer for Swansea Bay University Health Board. Twitter: @EcclesGemma.
SAVE THE DATE! EAPC 18th World Congress 15-17th June 2023. Find out more here.