A tonsil cancer patient (in white shirt) reads a form as his youngest child and wife look on, during a home visit by non-profit cancer organisation Makna in this filepic. A new study reveals that as their cancer progresses, patients place relatively less value on dying at home.
Globally, more than three-quarters of patients with late-stage cancer do not receive hospice or palliative care, with most of these unmet needs concentrated in low and middle-income countries (LMICs).
This burden of suffering is particularly alarming in Malaysia because over 63% of cancer patients are diagnosed in advanced stages.
Yet, access to palliative care – which is a medical approach that aims to improve quality of life (QoL) by preventing and relieving suffering, as well as treating a patient’s pain and any other problems they face – is available to less than 10% of the population.
Additionally, Malaysian cancer patients often have limited involvement in the process of making medical decisions, which may be attributed to their lack of medical insight and practice of deference to authorities in Asian culture.
A study conducted by researchers from Monash University Malaysia, Hospis Malaysia and King’s College London, has delved into the intricate interplay between QoL and survival preferences of advanced cancer patients by quantifying patients’ preferences for QoL outcomes against survival.
The study, published in the journal Value in Health, had completed responses from 100 patients who had been diagnosed within the last six months, from two Malaysian public hospitals, with 45 also completing the follow-up response three months later.
The patients were asked about seven attributes valued in cancer management: physical, psychological and social functioning; pain control; survival; place of death; and cost.
They placed higher values on QoL improvements from severe to moderate or mild levels (up to three times more for physical functioning and two times for good pain control), and achieving death at home, over an additional one-year survival.
However, additional QoL improvements (from moderate to mild) were not valued as highly as life extension from 12 to 18 months, showing that it is severe health dysfunction that patients wish to avoid.
After three months, it was found that the patients’ preferences changed significantly for two QoL outcomes, with relatively lesser importance placed on social functioning and death at home.
The patients were also invited to participate in interviews to gain deeper insights into their experiences and the impact of care accessibility on their preferences.
Many recounted enduring debilitating side effects of treatments, which they described as “destroying the remaining days” of their lives.
Alongside physical impairments and reduced ability to work, younger patients – primarily females – expressed emotional distress that they could not fulfil their household responsibilities, including housekeeping and caring for children.
The researchers concluded that with QoL outcomes valued more than survival, palliative care should be introduced as early as possible to alleviate suffering related to advanced cancer.
Lead researcher Alene Yong believes the implications of this research could reverberate across cancer care resource allocation and clinical practice.
“This study will help clinicians better understand patients’ preferences and highlight the importance of constant communication with patients because their priorities change with time and disease progression,” said the Monash Malaysia PhD student, who conducted the research analysis during a placement at King’s College.
Co-study author and King’s College Research Fellow in Health Economics Dr Lim Ka Keat added: “These findings underscore not just the importance of providing palliative and supportive care for patients with advanced cancer to alleviate issues on physical functioning and pain, but also regularly involving patients in decisions about management of their advanced cancer.”
