Collaborative study on late-stage cancer reveals preference for quality of life, shared decision-making

A collaborative study by Monash University Malaysia, Hospis Malaysia, and King’s College London has revealed the profound effects of late-stage cancer diagnoses on patients’ daily lives.

This research is particularly relevant given that over 75 percent of late-stage cancer patients globally do not receive hospice or palliative care, a problem affecting mostly low- and middle-income countries (LMICs). In Malaysia, this issue is stark, as over 63 percent of cancer patients are diagnosed at advanced stages, yet less than 10 percent have access to palliative care.

The study reveals that patients with advanced cancer place a significantly higher value on quality of life (QoL) improvements, such as physical functioning and pain control, than on extending their life by a year. The desire for life extension is only meaningful to them if they can maintain moderate functioning levels. A follow-up 3 months later showed increased emphasis by patients on physical functioning and pain management. The study also highlights a cultural aspect in Malaysian healthcare: patients often have limited involvement in shared decision-making.

Many patients reported severe side effects from treatments, which they felt ruined their remaining days. Besides physical challenges, younger patients, especially women, faced emotional distress due to their inability to perform household duties, such as housekeeping and childcare.

Lead Researcher Alene Yong, a PhD student at Monash University Malaysia, noted that this study is pivotal for cancer care resource allocation and clinical practice. Yong emphasized the importance of understanding patient preferences and maintaining ongoing communication, as priorities can shift over time and with disease progression.

Professor Dato’ Dr Adeeba Kamarulzaman, Pro Vice-Chancellor and President (Malaysia) of Monash University Australia, stressed on the importance of understanding the balance between quality of life and survival preferences in advanced cancer patients. She commended the collaborative research for spotlighting a critical aspect of palliative care and urged healthcare stakeholders, policymakers, and practitioners to prioritize not just life extension but also its quality.

Dr Ednin Hamzah, CEO of Hospis Malaysia and Chairperson of Asia Pacific Hospice Palliative Care Network, noted that this research provided crucial insights into the QoL trade-offs for cancer patients in Malaysia, aiding clinical decision-making in cancer management.

Lim Ka Keat, Research Fellow in Health Economics at King’s College London, reiterated the need to provide palliative and supportive care for advanced cancer patients. He said the care should focus on alleviating physical functioning and pain issues while regularly involving patients in decisions about their cancer management.

In summary, this study underscores the necessity of comprehensive care for late-stage cancer patients, emphasizing the importance of QoL, patient involvement in treatment decisions, and the need for broader access to palliative care, especially in LMICs like Malaysia.

Ed: The key finding of the study were shifts in patient preferences as time progressed. Preferences for social functioning and death at home changed significantly after 3 months. This suggests that patient preferences for end-of-life care and QoL outcomes can change over time, and it is important for clinicians to regularly engage patients in discussions about their preferences, especially at important junctures of cancer care.