Throughout November, we are publishing a special series of blogs on Contemplating Cancer. We invited people to share their experiences and views on communicating about cancer in a tweetchat, and Sarah Chapman reflects on what emerged. Above artwork: ‘I am here’ by Jo Wightman, a self-portrait during chemo. It is part of the Breast Cancer Art Project.
Following three powerful blogs in which Sally Crowe shares her experience of cancer-related post-traumatic stress and doctors Liz O’Riordan and Charlotte Squires talk about how having cancer themselves altered their perspectives on communicating about cancer, we opened up the discussion on Twitter. People brought a range of experience to the questions, exploring what they want health professionals to know about communicating about cancer and what makes a difference in these conversations; training and other influences on health professionals’ practice; and talking about mental health in conversations about cancer. Here is what emerged during the chat.
Honesty and humanity are important
Several people spoke of the need for honest and clear communication, about whether the diagnosis is cancer (use the word), spread, Something done with the aim of improving health or relieving suffering. For example, medicines, surgery, psychological and physical therapies, diet and exercise changes. More possibilities and prognosis. People need hope, but practitioners need to be careful to avoid ‘spin’ too. Delivering such news and discussing cancer can be brutal; these conversations need to be filled with with humanity, with kindness, recognising that this may be a life-changing moment for the person and their family.
There is a risk that in the routines of clinical practice the individuality of those in the room may be lost, resulting in unintended additional trauma. Personal preferences and priorities can get overlooked.
“I wanted to be asked what was important to me at that time… it can so easily feel you are being taken through a process rather than it be individualised… My emotions never caught up with the pathway. It was one of the most challenging elements.” (Liz Clough, a nurse who has had cancer).
Body language and ‘Captain Click syndrome’
Non-verbal communication, such as good eye contact (or lack of it) and physical positioning, really matter – both at the time and looking back. These things can communicate so much. As Sally said in her blog Cancer and post-traumatic stress, “if I had the slightest doubt that the listener isn’t really that interested or is not concentrating on what I am saying – it’s a no-go. I think that this applies to cancer more generally, communication is about giving and receiving and there are many barriers to doing both well.”
Casey Quinlan talked about ‘Captain Click Syndrome’, the phenomenon of the doctor (or other practitioner) typing and/or looking at the screen, rather than at the person they are with. This will be familiar to many. The absolute worst place for this, Casey said, is during a conversation with a person and their family about cancer.
Helen Miller, a retired GP, reflected that health professionals need to choose their words with great care, not least because they will be remembered, a lesson brought home to her when she had cancer herself and received cards from patients, some quoting things she had said to them. Sally spoke of having “a freeze frame of time, place and words at diagnosis”.
Helen also shared an experience of being on the receiving end of two very contrasting deliveries of essentially the same message, that chemo had damaged her heart. One was entirely negative but the other came with the information that it usually improves. “There is an art in sharing devastating/life-threatening news”, she reflected, and recalled with gratitude the way her doctor gave her the news of her diagnosis: “you have a very dysplastic (nasty) AML but our aim for treatment is curative.”
Conversations need to be ‘patient-friendly’ at all times, avoiding the need for family or friends with medical knowledge to fill them in later. But those people supporting their loved one with cancer may also want to step in, and perhaps draw on their own clinical knowledge to challenge and question. This can be unwelcome or can be met with patience and kindness; in this, as in all else, people had a range of experiences.
Simon Stones’ message to health professionals, from his experiences of supporting his mother, who had cancer, is this: “We don’t expect you to have all of the right words. What I do expect is for you to be empathetic, supportive, and optimistic about putting in place everything that is practically possible to help the patient and their family on the road ahead”.
Listening, giving space and time…
Becoming comfortable with silence in consultations is important, though potentially challenging for practitioners, and allowing space in the conversation for the person to absorb and process what they are being told. Little may be retained from ‘high stakes’ conversations. Delivering news that is unexpected can also throw people, as Charlotte Squires mentioned in her blog Communication with cancer patients: does practice make perfect?. Beki Smith was not expecting to need chemo but suddenly found herself being asked to give consent and start planning it. “I needed time to process so said I couldn’t do anything there and then. He put in my notes that I had declined chemo., which wasn’t at all what I said, just that I needed to go home and have a discussion as I’d gone on my own to the appointment.”
Time for questions is vital but so is listening properly, which will help practitioners understand what people want and need to know, rather than telling them what they think they should know. “What do you know?” and “what would you like to know about/more about?” are important questions. Have answers ready too or to be able to signpost people to appropriate sources of information and support. Listening can have other benefits too. Simon said “when mum (and I) were listened to, we felt valued and as though ‘this wasn’t the end’”. Offering a private space to talk things through, or following up with a phone call, can also be really helpful.
Challenges for practitioners in communicating about cancer
There was acknowledgement that giving people life-changing news and handling raw emotions isn’t easy for health professionals, something Liz O’Riordan discusses in her blog Does communication skills training improve cancer care?. Helen noted that knowledge of a patient, which she had as a GP and enabled her to tailor the conversation for that person, is not available to hospital staff meeting them for the first time, creating an additional layer of difficulty.
Lack of continuity of care is unsatisfactory for both patients and practitioners and can contribute to communication barriers and misinformation. Personal experience of this included being told an investigation was needed and then that it wasn’t, and the communication difficulties for a doctor when a family was seen first by another team and insisted information was withheld from the patient.
Lessons from experience
Several people taking part in the tweetchat, as well as our bloggers, are health professionals who have had cancer themselves. Not surprisingly, their illness experiences have influenced their practice. Beki, who is a clinical librarian and pharmacist, said “I think much more about the words I use, not just with cancer patients, but with everyone”. It has also given her the kind of understanding of what people are going through that can only come with experience: “I now know what it’s like to be the patient who is scared, tired, ill, worried, fed up, grumpy”.
There was agreement that the hospital bed, a place where people have to make some huge decisions, is also a place where they can feel small and at their most vulnerable.
Taking other aspects of themselves to their experiences as patients can be interesting, and even helpful. Charlotte reflected on strangeness of being in a clinical environment in the uniform of a patient (jeans!) when she would otherwise be there as a doctor, noting a shift in the power dynamic, while Casey has found her professionally honed skill as a penetrating interviewer is really useful to her as a patient!
During the tweetchat, coincidentally, a poem was shared on Twitter which was so relevant to our conversation. We haven’t been able find out who wrote it, but it seems to be widely shared and sometimes used by NHS Trusts for teaching.
Advice from a patient
This may seem like a normal day at work for you,
But it’s a big day in my life,
Remember I am not usually this needy or scared,
I am here because I trust you, help me stay confident,
I may look like I’m out of it,
But I can hear your conversations,
I’m not used to being naked around strangers,
Keep that in mind.
I’m impatient because I want to get out of here.
I don’t speak your language well,
You’re going to do what to my what?
I may only be here for 4 days,
But I’ll remember you for the rest of my life.
Your patients need your patience.
Talking about mental health
Not surprisingly, experience has been a powerful teacher here. Beki said, “I had a friend who’d been through it some years before. After I had been through it, I met up with her, gave her a huge hug and said “sorry, I just didn’t understand before now”.
Mental health may be little discussed, or not at all, the focus being on treating the cancer.
“As a consultant I rarely mentioned it. As a patient I didn’t realise that the mental impact of cancer could hit me years after the initial diagnosis.” (Liz O’Riordan)
Others too had felt okay during treatment, only to struggle with their mental health long afterwards, at a stage when people assumed they were – or should be – fine. The transition from surviving to thriving can take a long time. Worrying about the impact on families, and a desire to shield them, was also mentioned as part of the mental burden of cancer.
There was a feeling that things might be changing for the better in this respect and perhaps influenced by the pandemic and a raised awareness of mental health struggles. Cathy McDaid, a breast care nurse said that doing holistic needs assessments helps her to discuss mental health issues with patients, giving her and them ‘permission’ to bring it up.
Some have had good support for their mental health, including after years without, with Maggie’s Centres, The Leukaemia and Intensive Chemotherapy Fund and @ShineCancerSupp specifically mentioned. Opportunities to meet others in a similar situation can be particularly helpful, and signposting to appropriate groups is one way health professionals can help.
Sally’s blog has resonated with many people and came up in the chat too, valued for the practical strategies that Sally has adopted and her eloquent description of her experiences in which others have recognised themselves and gained a better understanding. Our #ContemplatingCancer series blogs and tweetchat also prompted two other blogs, “I can only please one person at a time. Today I choose me” by Olivia Fulton and “The irreparable damage of cancer” by Simon Stones. These words of Simon’s seem a good way to end this blog, for they sum up the tweetchat:
“Never, ever, underestimate the power of your words and actions – sometimes, we can’t change the future, but a supportive and caring hand can make all the difference.”
Read the rest of the blogs in the “Contemplating Cancer” series:
- Informal caregivers: the invisible people caring for cancer survivors by Beverley Lim Høeg and Pernille Envold Bidstrup
- Prostate cancer: “To treat, or not to treat?” by Francisco Lopez, Freddie Hamdy and Alastair Lamb
- Cancer and Post-Traumatic Stress by Sally Crowe
- Communication with cancer patients: does practice make perfect? by Charlotte Squires
- Does communication skills training improve cancer care? by Liz O’Riordan
- Contemplating Cancer: a special series from Cochrane UK by Sarah Chapman
Join in the conversation on Twitter with @SarahChapman30 and @CochraneUK or leave a comment on the blog. Please note, we cannot give medical advice and we will not publish comments that link to commercial sites or appear to endorse commercial products. We welcome diverse views and encourage discussion. However we ask that comments are respectful and reserve the right not to publish comments we consider offensive.