When faced with a cancer diagnosis, some patients choose to say ‘no’ to treatment. Their reasons are varied – and often misunderstood. Now, research has offered rare insight into the beliefs, fears, and values that drive these decisions.
Published in Supportive Care in Cancer [link here], the study analysed responses from a small but diverse sample of 39 participants from across Australia, the UK and the US who ranked 44 possible motivations to uncover the underlying beliefs and values guiding their decisions.
Investigators, led by Dr Darren Haywood (PhD), a postdoctoral research fellow at University of Technology, Sydney, identified eight distinct motivational factors, which collectively accounted for two-thirds of the variance in treatment refusal behaviour.
The most common reason related to concerns about treatment side effects such as nausea, fatigue and vomiting. According to investigators, participants in this group were not motivated by how sick they felt, but by the anticipated toll that chemotherapy, radiotherapy or targeted therapy might take. Many participants in this group described treatment not as a hope for cure, but as a threat to their quality of life.
“I believed the side effects of conventional cancer treatment would significantly reduce my quality of life,” one person said – a view that typified the largest group in the study. These participants weren’t necessarily sicker than others, say researchers, rather, they feared that treatment would strip them of dignity, mobility, and comfort.
Another group said they were already too unwell to tolerate the rigours of treatment – a decision shaped not only by their own physical state but also by a deep distrust of the medical system and the doctors recommending treatment.
“I did not trust the medical system, including the practitioners that recommended I undergo conventional cancer treatment,” one participant said. For these patients, clinical advice carried less weight than their own instincts, or the accumulated experience of friends and family.
“The experience of [these] participants demonstrates how treatment refusal can be motivated by the anticipated impact of cancer treatment on their lives, rather than the current impact of their cancer,” say investigators.
In contrast, some participants rejected treatment despite trusting their clinicians, citing concerns about the financial burden instead. Most of these individuals were based in the US, where, the authors noted, “financial toxicity is common due to the absence of a national insurance scheme”.
Older participants were also more likely to refuse treatment based on age-related perceptions, believing that intervention was less necessary or would only place a burden on loved ones.
Religious and spiritual motivations were split into two distinct categories: some participants believed practices such as prayer or spiritual rituals would heal their cancer, while others felt influenced by their beliefs without expecting supernatural healing.
The researchers also found that some individuals were driven by a bleak prognosis and a desire to prioritise quality over length of life.
“I believed that the prognosis I was given, if I was to have conventional cancer treatment, was not good enough for me to choose to do it,” one participant reported.
A final group opted for natural or alternative approaches, expressing a preference to manage their cancer through lifestyle and diet. However, fewer than half of these participants reported actually using complementary or alternative therapies after diagnosis, suggesting a possible gap between intention and follow-through, or differences in how participants define alternative approaches.
While the study does not attempt to quantify how common treatment refusal is, or link motivations to clinical outcomes, the authors say it provides important insight into patient thinking – insight that may help clinicians and family members better understand decisions that diverge from typical cancer care pathways.
“Cancer treatment refusal is often misunderstood,” the authors wrote. “Our findings may assist practitioners and family members to better understand the motivations behind an individual’s decision to refuse cancer treatment, especially when refusal diverges from optimal survival outcomes.”
They stopped short of prescriptive advice, instead emphasising the importance of open, values-based communication.
“Enhancing practitioners’ understanding of cancer treatment refusal may improve cancer care,” the authors concluded.
They recommended clinicians adopt a person-centred approach when discussing treatment options – one that includes room for patients to voice their concerns about finances, side effects, faith, prognosis, and natural healing.