For the approximately 150,000 Australians diagnosed with cancer each year, the initial shock of receiving a cancer diagnosis often marks the beginning of a tumultuous journey. Many patients find themselves navigating a complex network of appointments, specialist care, and medical terminology, leading to feelings of confusion and disempowerment.
Dr. Susannah Morris, a health consumer advocate and academic in social sciences, experienced this firsthand when she was diagnosed with aggressive breast cancer in 2016. Despite her background in health policy research, she struggled to make sense of her diagnosis and treatment options. “If I found it this hard to navigate the experience of being diagnosed with cancer… what about everyone else?” she questioned, highlighting the challenges faced by many patients.
The Tsunami of Diagnosis
Describing her experience, Dr. Morris likened it to waiting for a tsunami, where the reality of her situation felt overwhelming and unpredictable. “Your horizon has changed… the ocean’s pulled back and you know the wave is really going to hit you but you’ve absolutely no idea what to do or where to turn.” This sense of urgency is compounded by the need to learn a new vocabulary of cancer-related terms, which can add to the emotional burden.
Dr. Morris’s treatment involved multiple surgeries, chemotherapy, and interactions with various medical professionals across specialties such as surgical, medical, and radiation oncology. The fragmented nature of care left her feeling lost and overwhelmed, a sentiment echoed by many others in similar situations. “No provider sees everything that happens in a patient’s journey… the system is organised around pathologies and providers, not the person,” she noted.
To address these systemic issues, All.Can, a not-for-profit organization focused on improving cancer care efficiency, is calling for Australians affected by cancer to participate in a survey aimed at shaping the latest refresh of the Australian National Cancer Plan.
A Focus on Living Well
Dr. Morris emphasizes that cancer care should extend beyond mere survival. “People don’t just care if they’re alive or dead,” she stated. “They want to live well with and beyond their cancer diagnosis.” The survey is designed to capture patient experiences and unmet needs, aiming for better coordination of care and access to navigators who can assist patients through the healthcare maze.
Professor Christobel Saunders, co-chair of All.Can Australia, pointed out that understanding the financial implications of cancer treatment is often an overlooked challenge. “At least 10 percent of annual income will go towards treatment, and many cannot afford tests, investigations, or non-medical costs like childcare and travel,” she explained. The survey results will help inform strategies to improve care navigation and address financial burdens, especially for vulnerable populations, including young people and Indigenous Australians.
Psychiatrist Steve Moylan, chair of Lifeline Australia, added that the psychological impact of a cancer diagnosis adds another layer of complexity. “A cancer diagnosis is a major life stressor… People are suddenly required to understand a lot of information and make important decisions while under enormous stress,” he said.
Dr. Morris advocates for a more person-centred approach to cancer care, which would take into account the long-term needs of patients living with “treatable, not curable” cancers. “Quality of life matters as much as quantity,” she asserted, as many patients face long-term effects from treatment, including pain and fatigue.
Both Dr. Morris and Professor Moylan believe that implementing a more integrated system could alleviate some of the mental strain associated with cancer treatment. “Supportive care, psychological care, and practical assistance are not extras; they are fundamental,” Moylan stated, emphasizing the need for healthcare systems that see the whole person, not just the disease.
The All.Can Australia survey will remain open until September 17, 2023, offering a crucial opportunity for patients to share their experiences and influence the future of cancer care in Australia.
