Introduction by Croakey: Healthcare students and practitioners need to be open to deep reflection and reflexivity, particularly when supporting cancer patients through their journey, according to PhD candidate and cancer survivor, Daniel Johnstone.
This was one of the core messages shared by Johnstone at the Australian Society of Medical Imaging and Radiation Therapy (ASMIRT) 19th National Conference, hosted in conjunction with the New Zealand Institute of Medical Radiation Technology (NZIMRT) on Kaurna Country, Adelaide.
Below, Marie McInerney reports for Croakey Conference News Service on the powerful story shared by Johnstone of cancer diagnosis, treatment and beyond – an experience that led him to advocate for integrating lived experience with healthcare education.
Marie McInerney writes:
How do we use lived experience of cancer in health education settings to improve empathy in students through reflection and reflexivity?
That’s the crux of Daniel Johnstone’s thesis, and the next stage of his research and advocacy stemming from his gruelling experience of head and neck cancer in his 20s.
The Adelaide-based PhD candidate and cancer survivor, now aged 36, delivered two outstanding presentations at the Australian Society of Medical Imagine and Radiation Therapy (ASMIRT) 19th annual conference, which was held on Kaurna Country in Adelaide late last month, in partnership with the New Zealand Institute of Medical Radiation Technology (NZIMRT).
Johnstone said that most people who work in healthcare policy, practice and teaching would say they are onboard with the need to integrate lived experience with education, and he has now “gone out of my way to prove it is valuable”.
While consumer engagement in health gets better all the time, Johnstone said his experience and research suggests that it’s still too often a ‘tick box’ process, where in education the consumers are the “after-thought”.
“But what would happen if we turned that on its head and went from the ground up — fully consumer informed approaches to education in tertiary healthcare?” he asked.
The challenges are engaging people with lived experience who are able and safe to tell their stories, and to work through red tape to make it a standard part of student education.
His message at the conference was: “Just do it”.
Tough journey
As delegates learnt, Johnstone’s story is not for the faint-hearted.
The early signs of his cancer emerged in 2012 when he was just 24, he said, with a recurring ulcer on the back of his tongue that got to the point where “eating would make me cry”.
After many interventions, much anxiety and varying verdicts, he was finally diagnosed in 2016 with stage two squamous cell carcinoma of the tongue. He underwent major surgery and radiation treatment.
He told the conference about many awful moments during that treatment.
Three hours of standing in a shower while blood poured from his mouth. The traumatic experience of being fitted for a thermoplastic immobility face mask ahead of radiation therapy. Of having antibiotics administered “out of the freezer” and, because he couldn’t swallow, it was like “having a permanent Icy Pole stuck in your neck”. And of radiation as “the gift that keeps on giving”: burns, hair loss, blisters, ulcers, fatigue.
When he talked about one experience, where he pulled at “something” that was irritating the back of his throat and managed to accidentally rip the roof of his mouth “clean off”, the audience of experienced medical radiation science professionals, many working in cancer on a daily basis, gasped audibly.
And – a key message – it’s not over when the treatment ends.
Years later, he experienced post-traumatic shock when trying on a samurai suit in Japan; the pressure of the breastplate brought back memories of being fitted for the mask.
Patient lens
But the journey also gave him many insights into cancer care – about what helps patients and what hurts or harms them, and how it differs for different people and experiences, motivating him to educate healthcare professionals and students.
Johnstone is a director for Cancer Voices SA and helps facilitate the Survivors as Teachers program for radiation therapy and nuclear medicine students at the University of Adelaide, some of whom were in the audience for his presentation at the conference.
He has also completed a Bachelor of Health Science, a Bachelor of Psychological Science, and a Master of Clinical Chiropractic, and is a consumer advisor on “a tonne of projects”.
Like many with lived experience, he says, he stumbled into research by accident — a Facebook post led to an invitation to address health practitioners at Bendigo hospital and from there a panel discussion at the 2019 ASMIRT conference.
A gifted presenter, Johnstone’s insights at this year’s conference were graphic, raw, honest, desperately sad, shocking at times, and often very funny – right down to the title of one session: Tongue in cheek – A patient perspective on oral cancer.
His graphics were also powerful and fun, using AI to generate slides in the style of art masters, particularly Salvador Dali, because, he says, “life is surreal, and this was a very surreal time in my life”.
Missing the mark
Johnstone told the conference about comments and care received from health practitioners that had missed the mark for him during his cancer diagnosis and treatment.
He talked about being woken up at midnight during his intense recovery to have his catheter removed, just because it fitted the nursing schedule, and of being injected for nausea without his consent when he wasn’t experiencing any. He experienced clinicians who were lulled by his young age and non-smoking status into thinking that chronic pain was normal.
There were also many unwelcome comments: ‘You’ll be fine’, ‘you must be in pain’, ‘you’re too young to be here’, ‘you don’t realise how much pain you’re in’, ‘it must have changed you as a person’, ‘you’re okay now’, and — the one he wishes he could have a dollar for each time it was asked — ‘are you a smoker?’, and the implied judgement that he may have caused his own suffering.
They may have seemed appropriate questions for others, but not for him. His message is that every patient experience is unique, so health professionals should “be curious” about their patients.
“Don’t dictate an experience, ask the right questions”, including what motivates a patient to get better, he said. For him, it was an upcoming Guns and Roses gig and his best mate’s wedding.
Johnstone also shared standout moments of great care “that meant the world to me”.
These included a Post-It note from a radiation therapist saying ‘sorry’ for an inconvenient appointment time. Also, his ear, nose and throat surgeon who understood that he not only needed to know the next step but “the next 2,000 steps”.
He appreciated the clinicians who cut their out-of-pocket costs because they understood how expensive cancer can be, even in the public system. Similarly, the patience of the radiation therapists who understood his fear while fitting the head and neck mask.
Digging deeper
All of this has brought Johnstone – eight years after his treatment – to a PhD.
The full research question he is exploring is: “how can the stories of those with the lived experience of cancer be used to educate tertiary healthcare students about the patient experience, and from that, how would such an approach influence their attitudes and intent towards people impacted by cancer?”
The first part of his research included in-depth interviews with 21 people with lived cancer experience, teasing out how, if they had full control, they would use their stories to inform tertiary healthcare students.
He asked how much of their journey they wanted to share and in what way, how to highlight resilience while omitting traumatising detail, and what it meant for them to do so, particularly in terms of catharsis, validation and retraumatisation.
The next step for Johnstone was to think about the impact on students, looking at reflective and reflexive practices following engagement with a cancer survivor.
He found the limited existing literature suggested it was effective, with students reporting “really positive” outcomes, that they felt better and empowered by the engagement.
But he said those had no objective measure of the impact of any improved understanding among students, just their own sense of understanding, and also failed to look at how cancer survivors viewed the experience of sharing their stories.
He was also concerned that the literature mostly included experiences of medical and nursing professions, not the many others that connected with cancer care, including medical radiation science professionals.
Johnstone has since conducted a study of 48 healthcare students, including 18 doing radiation therapy and seven nursing, who were presented with his patient journey: half in person and the others via a video.
The early findings are that his presentations produced a low to moderate rise in empathy (measured formally) and that it did not matter greatly whether presentations were online or in real life. This may be important given the low number of survivors who want to or are able to share their stories and how often they might want to do so, he said.
Johnstone emphasises the need for healthcare students and practitioners to be open to deep reflection or reflexivity (a requirement also for providing culturally safe care for Aboriginal and Torres Strait Islander patients).
He urges practitioners to ask themselves, after an event or actions that did not go well, “what part did I play in the moment, who am I and what skillsets and attributes do I have that led to that situation occurring and how can I, with my skill sets, make that better?”.
He said: “It’s not superficial reflection, it is [the need to] go deeper, to really ask yourself the uncomfortable questions.”
Further reading: A core set of patient-reported outcomes for population-based cancer survivorship research: a consensus study
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