The rise of social media and blogs has resulted in some patients refusing conventional cancer treatments, raising new challenges for clinicians, writes Associate Professor Moira O’Connor from the Curtin School of Population Health.
In some cases, against medical advice, a person with cancer decides not to undergo conventional treatments such as chemotherapy, radiation therapy, hormone therapy, and others.
While estimates vary and do not account for silent withdrawals, up to a quarter of patients may decline treatment. Refusing evidence-based, conventional cancer treatments can pose significant risk to patients and is linked to rapid deterioration, poor prognosis, lower quality of life, and a substantially higher risk of premature death.
Treatment refusal also has implications for clinicians, due to the demands on time and resources needed to engage hesitant patients.
The challenge
People refusing conventional treatments not only choose to overlook options for effective cancer care and management but may also opt to use non-evidence-based treatments, commonly referred to as ‘alternative therapies’, that have limited or no demonstrated benefits for managing cancer.
While the internet can be a tool to access valuable information when given a cancer diagnosis, it can also promote misinformation.
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Alternative therapies represent a multibillion-dollar industry, and their products are aggressively promoted via the internet and without regulation.
Social media and blogs allow users to join groups of other people who share similar beliefs, resulting in the reinforcement of anti-science views.
What oncologists think
Developing an understanding of the relationship between health professionals and patients, where a therapeutic alliance is established, is seen as a key first step to creating new and effective approaches to increase conventional treatment uptake.
A recent survey aimed to explore oncology health professionals’ experiences and views on why patients refuse standard cancer treatments.
Four main themes were identified as follows:
- I want to do it my way
- Keeping the door open
- It can be draining
- Where to from here?
Exploring oncologists’ experiences of people refusing standard conventional treatments for cancer revealed multiple, complex motives.
These ranged from mistrust in medical authority, cultural beliefs, and the fear of toxicity from standard treatments. Decisions by patients appeared to be influenced by the lived experiences of others’ negative experiences.
Participants highlighted that it was essential to keep lines of communication open between clinicians and the patient, and that generally, but not always, a key focus was to keep the doors open to patients, including those who sought non-evidence-based treatments.
Even though participants reported that numbers were small, they recalled patients refusing treatment in great detail.
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They reported experiencing an emotional and professional burden when patients refused conventional treatments, and mentioned time and effort taken to work with patients who were refusing or not adhering to prescribed standard treatments.
They also reported professional tensions, ethical considerations, and trying to accommodate patients’ wishes.
The solution
The final theme of the survey addressed the way forward. Recommendations included patient education on credible data, clinician training in engagement communication, and targeted campaigns to counter misinformation.
Social media was mentioned and a quote from the study sums up the value of meeting people where they are.
“You need to meet the audience where they are and use some of the same hooks that get them in. Journal articles don’t get read but summarising systematic reviews and turning them into reels, which are the latest thing on Instagram that get a lot of eyes on them, it’s like a quick slideshow of four or five tiles that just say did you ever wonder about this?”
A call to action
Treatment refusal is not common, but it is deeply challenging. Treatment refusal after a cancer diagnosis creates a burden for people diagnosed including increased morbidity, premature death and, importantly, lower quality of life.
Health professionals also face a burden of care. Equipping clinicians with practical skills to manage difficult conversations – and reaching patients with accurate information where they already seek advice can bridge the gap between evidence and choice.
ED: The author was involved in the study mentioned, alongside:
- Darren Haywood, Postdoctoral Research Fellow (Cancer Survivorship), UTS
- Nicolas Hart, Senior Researcher at UTS
- Tracey Williams, School of Population Health, Curtin University
- Jordan Joseph, School of Population Health, Curtin University
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