Health professionals attending the recent Australian Society of Medical Imaging and Radiation conference shared some deeply personal stories, about death and dying, experiences as a cancer patient, and how their work can be heart-breaking.
Marie McInerney writes:
Behind many of the presentations at #ASMIRT2024 were personal stories of inspiration, suffering and learning that have guided medical imaging and radiotherapy professionals in their lives and work.
Here are three.
Story one: Talking about death won’t kill you
We don’t have a choice about whether or not we will die, but if we are lucky and informed we can choose to not “crash and burn” in death but have a “safe, soft and gentle landing”, surrounded by those we love who are also well prepared for the inevitability.
That was the message on death from former radiation oncologist Dr Colin Dicks to medical imaging and radiotherapy professionals at the recent Australian Society of Medical Imaging and Radiation conference (#ASMIRT2024) in Darwin, on Larrakia Country.
It’s also what inspired him, after decades of treating cancer patients, to write ‘Death, Dying and Donuts’, a “user manual”, and to found Dying to Understand, a not for profit organisation that promotes death literacy, with specific advice for health professionals.
Sunshine Coast-based Dicks, who now works in skin cancer care and runs radiation therapy workshops at Queensland University of Technology, said one of the difficulties in clinical oncology practice is knowing when and how to talk about death with patients and their loved ones.
“I’ve learnt that if we bring this conversation up at the wrong time, it’s disastrous for the doctor-patient relationship…it causes conflict, people don’t forgive us,” he said.
He recalled one patient, a man in his 20s, who was in denial that he was close to death. Dicks told him it was time to face reality, and “he was furious with me”.
But if we don’t face death, it can add pain, distress, and financial cost, and be unbearable for loved ones, he said.
Ahead of his presentation, Dicks told Croakey that he “fell into radiation oncology” as a profession. He had not been enjoying general medical training, but then was assigned to a radiation unit and “immediately fell in love with the work”.
Part of it, he said, is the power and magic of radiation therapy, of the life it can give back to people with cancer, but it was also about being with people on a profound journey where some will be cured and others will die. “You’re not just treating the disease, you get the whole person.”
But in the process, he was struck how ill-equipped many people are for the process of dying, raising a dilemma for health professionals: “Do we intervene? Should we intervene? Should we say something?”
And it’s not just the patients for whom the conversations are difficult, but also for health professionals.
It’s a topic he canvases with QUT students, warning that they will be working in an environment where people are regularly facing death and that being death literate will likely make them better in their care-giving.
“We’re not just treating a brain cancer, we’re treating an emotional cyclone coming through the department, with family, with loss, with changing circumstances.”
Dicks shared some other key lessons with the conference and with Croakey:
- We need education to equip us for death
For his book, Dicks interviewed two focus groups of people who had been through bereavement due to cancer, asking “what did you know and what did you learn when it came to dying?”.
He expected to gather some “hot tips” for how better to inform others but was surprised that most people had been “totally ignorant”.
They had not known what to expect, they did not understand the process of dying, including what happens to the body in the last stages of life, such as “the death rattle”. This meant that one family arrived back at the bedside of their loved one only minutes before they died, he said.
That lack of knowledge also extended to understanding medical procedures, with some believing that when doctors would use a syringe driver to deliver a steady flow of painkillers, “they were speeding up death… using it to end life”. They didn’t realise it was used “when death is already at the door,” he said.
That’s why he wrote the book. As well as being a user manual, it gives people time and space to have those conversations, which do take time. “You can’t rush it. So when we are time poor as doctors, the conversation can go wrong really quickly,” he said.
“The nice thing about a book is it’s not threatening. You can give it to someone and they can, in their own space, in their own time, page through it.”
2. There are many costs to not being equipped for death
Dicks said the costs of denial or ignorance in dying include emotional toll, but also procedural costs where, instead of facing death, patients and/or their families keep pursuing ways to stay alive.
He talked of patients undergoing dramatic yet futile interventions, including amputations, risky brain surgery, and travelling overseas for alternative therapies. “We don’t want to talk about death, we just want to keep preserving life,” he said.
There was responsibility here for doctors to say no.
“Part of the problem as doctors is we want to save lives and, if we’re not doing that, we think we’re failing in our duty. But…there’s a time when we have to…say ‘we’re not going to save this life, we’re going to respect this life’,” Dicks said.
“To me, the superheroes in medicine are the palliative care teams, because they recognise we are no longer trying to cure…we’re about helping.”
3. There is always more we can do
Dicks said it distresses him when doctors say “there’s nothing more we can do”.
“What a terrible place of hopelessness [to say that],” he said.
“We can always do something: we can care, we can listen, we can stand next to someone, we can hold their hand, we can be human.”
4. Dying is a verb
Dicks outlines in his book that death is a noun, but dying is a verb, an active process, “very much an action word, a whole lot of things have to happen when you’re busy dying,” he said.
5. Death education is a positive experience
Dicks said there is a sense of relief and of control when people realise they don’t have to “crash the plane” when it comes to death, and that they can “land it safely”.
6. Death is normal
As Dicks said, “the probability of dying is one. Everyone gets to have a go.”
But what makes it so abnormal, he said, is that it’s generally spoken of as “terrible, nasty, awful”.
“No wonder we are completely dismayed when we think about death,” he says, giving a graphic analogy, that if we were eating an ice-cream and someone said it tasted like urine, “it wouldn’t matter how hard we tried, it wouldn’t taste nice after that”.
At the same time, he said, we have sanitised death.
Instead of being a normal part of our life, as it was 100 years ago, our loved ones’ bodies “get covered up, whisked to the morgue, nobody talks about it and when we talk about it…it’s done in negative terms”.
7. Make your seconds count
Dicks said it’s important to be able to write our own final chapter, but also to not become obsessed with it.
“People spend enormous time of their life worrying about their last day when they still have all the other days to live, which brings me to the most important question: the 86,400 question.
“Every day is made up of 86,400 seconds — what do we want to do with that day today… What are you doing with your gift of life? Are you enjoying life, are you making it count, are you breathing it in, are you savouring the enjoyment of being alive?”
8. Talking about death won’t kill you
Finally, Dicks urged delegates to be an advocate for death education, to bring up the topic of death at dinner with family and friends. He warns there’ll be a stunned silence for a second or two, but then everyone will get involved.
Story two: Talking from the other side of the machine
Leading United Kingdom radiographer Dr Rachel Harris is a veteran of radiography “from both sides now”, with important messages for her colleagues in how they support their patients.
One key message is take the time to know them because it may save time and distress in the long-term.
Harris, who is Head of Professional Practice and Education at the Society and College of Radiographers in the UK, delivered a very personal presentation at #ASMIRT2024, titled, The other side of the machine: experiencing imaging as a cancer patient.
She told delegates that in 1990 she was diagnosed with a pituitary adenoma, a benign (noncancerous) growth, and experienced a few other health issues over the ensuing decades.
Then in 2016, she was diagnosed with invasive stage 2 breast cancer, and her journey into cancer treatment began, undergoing mammograms, an ultrasound guided biopsy, CT scans, chest x-rays, PET CT scans and radiotherapy.
Following successful treatment, she now only needs an MRI scan every three years. But there have been multiple “scares” along the way, requiring a sternum CT scan, MRI to her spine, and DEXA bone density tests.
“Once you become a cancer patient, you seem to be forever a cancer patient,” she said, laughing as she described herself as being “like an audit of imaging facilities” and confessing to suffering from “scan-anxiety”.
Some of those diagnosis and treatment experiences were good, “or as good as they can be under the circumstances”, she said, such as a one-stop clinic where she could see her doctor, have a mammography and biopsy in an hour.
Some were not good, Harris said.
“Health is a state of not just physical but psychological wellbeing. It is very easy when you’re working in practice to forget psychological and social wellbeing,” she said.
“What’s really important is to remember the individual,” she said. What was important for her was partnership and control – “I don’t want paternalistic care, I want true informed consent,” she said.
As a result, she appreciated having a technician indicate ahead of a formal report that it looked like cancer, though she admitted that might have been because she was a radiographer and it fitted with her skills and understanding.
Dignity was also crucial, but there were times when she was left in a state of undress that caused her distress. “On the third day [it happened], I cried. It made me realise how impactful [modesty] was for me”, she said.
Taking care to cover someone up is “just a little thing, just takes a second.”
So too does values-based healthcare, she said, where health professionals take time to introduce themselves and connect to the patient.
Some of her colleagues say they can’t do that “because it takes too long”, but evidence shows that taking time to listen to a patient and look for informed consent can save time and money over the longer-term.
Harris later told Croakey that she never thought she’d be a cancer patient herself, despite the odds. “When it happens, it’s quite a leveller”.
She knows well how, in a busy clinic, you can be asked what’s coming up next, and respond “it’s another breast” or “another prostate”.
“A breast doesn’t come in on its own,” she notes, emphasising the need to remember the whole person.
Asked if it had changed her practice, Harris said she doesn’t work clinically anymore, but that she had always had a passion for patient centred care and had completed her Master’s degree on the patient experience, interviewing people with head and neck cancers.
Shockingly, Harris said she has suffered awful criticism at time from fellow health professionals for sharing her story, accusing her of “weaponising” her cancer.
“You don’t share your story lightly and, every time you do it, it takes a little bit of you,” she said. “I do it because it’s important to share.”
Watch this interview with Dr Rachel Harris; and this X/Twitter thread from the session.
Story three: “It really broke my heart”
Ruth Pape found her mission in life after the devastating experience of watching women in her home country of Papua New Guinea go back to their villages to die because lack of access to mammography screening meant their breast cancer was diagnosed far too late.
“It really broke my heart,” Pape told Croakey at #ASMIRT2024. An Australian-based Papua New Guinean radiographer and PhD researcher, she presented at the conference on her research into mammography positioning, which is investigating the influence of body shape, particularly of the thorax or chest, on image quality and therefore effective screening.
Having worked as a full-time diagnostic radiographer and taught medical imaging science courses in Papua New Guinea, she is now undertaking her PhD at the Charles Sturt University School of Dentistry and Medical Sciences in Wagga Wagga.
Pape has previously reported that allied health professions in Papua New Guinea are very much in their infancy in terms of having a workforce of university-qualified practitioners, with a critical shortage in the radiography workforce, where there is just one qualified professional per 27,000 people.
What worries her particularly is that the issue is so acute in rural areas, which is home to 87.5 percent of the Papua New Guinea population. Many areas have no radiographer workforce for a range of reasons, including poor transport, challenging geography and logistics, declining healthcare infrastructure and a lack of medical imaging equipment.
Pape said the School of Medicine and Health Sciences at the University of Papua New Guinea where she completed her Bachelor of Medical Imaging Science is working to develop an assistant radiography program to train practitioners on the ground in rural areas, so they are more likely to equipped and ready to “serve the community where they live”.
She would be keen to see Australia and the Australian medical radiation science profession support the development of the profession, and the equipment needed, in Papua New Guinea.
Watch this video interview with Ruth Pape.
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