“Those little things really matter… They make the unbearable, bearable.”
Kate Granger (@GrangerKate), doctor and cancer patient, tweeted this last week, a message at the heart of her phenomenal #hellomynameis campaign, which is improving care throughout the NHS by reminding staff of the importance of introducing themselves to patients.
Kate calls it the first rung on the ladder to compassionate care, something which depends on good communication throughout. When it comes to caring for children and young people in hospital, communication presents particular challenges, and getting it right for our young patients means getting it right for their families too. So how can we do this?
In recent years, adolescent brain development has come to be better understood, but has research helped us know how best to communicate with our young ones about their health and particularly when they become patients? I’m going to look at some evidence, to see if that can help, some experiences bravely shared by the mothers of two young people with cancer, and a brilliant leaflet written by a 17 year old who has some tips that can help us improve our communication with teenagers in hospital.
Here’s the science
Can interventions like art therapy, story telling and computer-assisted education programmes improve communication with children and adolescents about their cancer? A Cochrane review looked at this and found ten ten studies but, disappointingly, the evidence is weak and inconclusive. It would be really valuable to have an update of this review, with the hope that there will be better designed and conducted research to include and perhaps evaluating interventions using emergent technology.
A more recent Cochrane review addressed ways of involving children with cancer in decisions about their care but found no trials that could be included. This is another lamentable gap in the research. The reviewers comment that
“Much of the evidence promoting children’s participation is authored by policy makers and we lack strong evidence from research that supports these recommendations. It does seem to be the ‘right’ approach for clinicians to include children in SDM [shared decision-making] but we do not have strong evidence that indicates which children desire inclusion, at what point in the trajectory of their treatment or illness, and with whom do they want to share decision-making and about what topic. Children sometimes prefer a passive role in SDM because they are too ill or distressed by the treatments. Likewise some children prefer to hear information from their parents especially if it is ‘bad’ news or about treatment side effects.”
The way forward? “We need interventions that help support children’s participation in SDM but which will also recognise and maintain family integrity” they suggest. “Perhaps the focus should be towards developing interventions targeted at parents and children so that parents can promote and support their child’s participation in SDM.”
What actually happens at the bedside?
It seems, then, that research can’t help us much, at least until we have more and beter evidence. What’s more, whatever the theories about communication, in real situations it tends to be messy and complex.
Anne is a nurse who experienced another side of health care when her daughter J-J had cancer. She talked about her experiences in this video. J-J was a young adult who had a mild learning disability. Anne explains,
“if you got into deep questions with her or asked her something, to figure something out, then… she would be lost and she didn’t want to admit that so she would just kind of ignore you or not answer and so that created problems. She knew this herself and so that was why she wanted me to make the decisions.”
Two years after J-J had a large fibroid removed, she had surgery for an aggressive ovarian cancer.
“In J-J’s mind she knew she had cancer, she knew she was really sick but also as far as she was concerned she was getting better… I know that was not the case but I supported her in that, as did her sister, because that was the best we could do for her, to support her. She only wanted the information she asked for and she didn’t want to make the decisions. She would say, “Ask my Mum, she will tell you”. She had a team in the cancer clinic… they accepted that, they worked with her.”
But this didn’t always happen and for Anne the gaps in communication were a big concern.
“A new oncologist came to work in the clinic and she didn’t know us, she didn’t know the background, didn’t really understand why when J-J was an adult she wasn’t making her own decisions and why I was making the decisions for her. But she was verbalising this in front of J-J and that was really upsetting for both of us.”
Another time, during a stay at her local hospital, J-J was seen by another doctor:
“Apparently he had come into the room and, again, you know, she was an adult, and he figured she was making the decisions and he read from her chart the diagnosis that she was a terminal patient and dying and this is what they were doing.
And he read that to her.
Well, she was, needless to say, just beside herself, so I went up to the desk and asked the nurses “Where is the doctor” – “He is making rounds” – and I said, “Well I want to see him” – “He is making rounds” – “I don’t care what he’s doing, I want to talk to him and I want to talk to him now”.
So I explained to him and said, “I don’t care what you do or how you do it but you go into her room and you talk to her and sort it out and settle her down so that she is back where she was when you entered the room”. So he did. He went in and he talked to her and said he was sorry that he’d read from the chart and had misread it and had made a mistake there and he was sorry and that they would sort it all out.
When she went in for the last four days of her life, it was the same doctor taking care of her and the change was, well, he was excellent, I have to say.”
“One of the things that is really crucial in health care is to always have the perspective, whether you call them patients or clients or consumers, citizens or whatever your term is, to have their perspective and viewpoint and things. Because it’s often very different from the provider perspective and you really need to have both of them before you move anything forward.”
Anne hopes that other parents who see the video will feel encouraged to speak up for their child’s needs and wants.
During my time nursing children and teens with cancer, I became particularly close to Matthew and his family through his months of treatment. Matthew died just short of his 18th birthday, an anniversary shared with his mum Sylvia. Now a friend of some 25 years standing, Sylvia has shared her thoughts about communication through Matthew’s illness.
Matthew came to us only after a long period of misdiagnosis. Sylvia recalls:
“The surgeon said “you will not have heard of this Matthew. You have Non-Hodgkin’s Lymphoma.” Matthew said “I have cancer then.” A close friend of ours had been treated for the disease so we knew exactly what it was. I would have collapsed were it not for my amazing son being extremely brave and I had to be brave for him.”
At 17, Matthew might have been admitted to an adult ward.
“Fortunately for us, compassionate Dr K was happy to keep him under her care [on the children’s ward]. This proved to be the best possible thing for us, not only for Matthew and I but for his older brother and sister. Matthew was the ‘big boy’ there and the other children would spend time with him and looked up to him and I know this helped Matthew.
He was always very positive that he would get better. As long as ‘Mum’ was coping, everything was ok.
From the day Matthew was admitted, the communication was excellent. We were given leaflets to read, but I didn’t read them. We sat with Nurse A and she explained exactly what his treatment would be, including the side effects, which she did in a very compassionate way, answering any questions we had. Andrew [Matthew’s brother] was my rock and would ask the doctors questions I was never brave enough to ask for fear of the reply.
For the last ten weeks of his life, we all stayed there as a family. There were four wonderful nurses who Matthew grew very fond of, as did I. Always there for us on good and bad days for comfort and support… especially Nurse S, with whom Matthew had a great affinity. It was as though she had been assigned to us and us alone.”
It’s the little things…
Sylvia reminds us that how we make people feel often lasts longer than the details of what we say. What’s more, Sylvia’s and Anne’s experiences show that information isn’t always what is most needed or wanted and that it’s vital that we strive to put good communication, based on the needs and preferences of each patient and their family, at the heart of compassionate care.
Communication is, of course, so much more than words. Sylvia and I recalled with some amusement that on one occasion in Matthew’s last weeks, when she appeared at his bedside, Matthew remarked “Mum, you don’t look attractive enough!” Sylvia had not taken her usual care with her appearance and this rather frightened Matthew, who really needed to know that Mum was ok.
Top tips for talking to teens in hospital
When 17 year old Jessica Platt was treated for pneumonia in hospital, she noted a ‘gap in the confidence of many members of the clinical staff when it came to interacting with me’. She surveyed teens and doctors, found out more about teenage brains and drew on her experience to produce a fantastic booklet, Teens in Hospital, full of tips on ‘how to talk to us teens in a way that we will (hopefully) listen to.’
It’s quite brilliant – do read it!
Thank you so much, Anne and Sylvia, for sharing your stories and Jessica for offering some very practical advice to health professionals to help them ‘get it right’.
Ranmal R, Prictor M, Scott JT. Interventions for improving communication with children and adolescents about their cancer. Cochrane Database of Systematic Reviews 2008, Issue 4. Art. No.: CD002969. DOI: 10.1002/14651858.CD002969.pub2.
Coyne I, O’Mathúna DP, Gibson F, Shields L, Sheaf G. Interventions for promoting participation in shared decision-making for children with cancer. Cochrane Database of Systematic Reviews 2013, Issue 6. Art. No.: CD008970. DOI: 10.1002/14651858.CD008970.pub2.
Canadian Patient Safety Institute. “Nurse experiences other side of health care during daughter’s illness”. Online video clip. YouTube, 26 October 2014. Web. 18 December 2014. https://www.youtube.com/watch?v=2SGGujXf2us&index=17&list=PLA60AC9A8FC295395
Platt, Jessica. “Teens in hospital”, 2012. In: “Participation in action: Teens in Hospital”, by Damian Wood, on behalf of Young People’s Health Special Interest Group, Royal College of Paediatrics and Child Health, updated 17 October 2012. Web. 21 September 2015.
Page last updated: 22 September 2015