Putting people at the centre of cancer care

Australia has some of the best cancer survival rates and approximately 1.6 million cancer survivors — a testament to advancements in cancer screening, diagnosis and treatment. But cancer survival comes at a price — physical, emotional, practical, and existential. Earlier this year, a world-first research centre dedicated entirely to cancer survivorship was launched in Sydney—the Australian Research Centre for Cancer Survivorship, a $40 million partnership between University of New South Wales and Cancer Council New South Wales. Cancer survivors and carers attending the launch spoke powerfully about their experiences, stressing that survivorship research needs to address three major gaps: the knowledge gap about the burden of survivorship and effective solutions; the implementation gap to get evidence-based solutions into routine practice; and an important third gap — the care gap.

The care gap 

This last gap may come as a surprise and does not imply that individuals providing cancer care are not caring people. But if care is defined as intentional and attentive engagement, then existing cancer systems seem to prioritise caring about the cancer as a main objective of cancer care. To be sure, caring about the cancer is a core aspect of caring about the person with cancer; but caring about the person includes so much more, as one’s personhood is defined by more than the one living with the disease. Regrettably, in our pursuit of cancer control, the relentless demands of scans, tests, procedures, and treatments tend to overshadow the holistic needs of a person living with cancer, with the focus on treatment delivery in an environment that is increasingly complex, fragmented, and potentially traumatic. In this challenging environment, caring for a person is more important than ever. 

Caring is what makes health care provision more than just a transaction. Health care providers are more than suppliers of, and people with cancer more than consumers of care. Caring is more than being nice — it is a practice that reflects who and what we value, and who we assign agency and respect to. It is a practice that should be learned, cultivated, and reinforced by the health system designed for that purpose.

Design the health system for caring  

Australian health policy includes several strategies that could bend the arc of health care toward caring, including the Australian Commission on Safety and Quality in Health Care recognising the value of assessing patient’s experience, the Australian Cancer Plan prioritising patient reported outcomes to identify needs that matter to patients and asking them directly, and the NSW Aboriginal Cancer Strategy that puts caring for kin and country at its core with emphasis on culturally safe practice and inclusion of Aboriginal voices and lived experience in decision-making. Yet these strategies are not yet systematically embedded in cancer practice. 

Internationally, the Lancet Oncology Commission has drawn attention to the global neglect of the human dimensions of cancer care, calling for greater research focus, education of health professionals, and system redesign that embeds incentives and accountability for caring. A United States study analysing narrative descriptions of clinical cancer encounters identified what made “a good oncologist” and included not just person centred care but meaningful relationships, authentic communication, kindness, empathy, humility and hope. These are all critical, teachable skills of caring that improve experience of cancer survivors. Caring also matters for health care workers, with greater compassion satisfaction associated with lower burnout. 

Cancer care is not unique — the care gap is a broader problem that impacts all branches of medicine and health. The cancer field has been a leader in quality improvement, service design and healthcare delivery, and it can be again when it comes to the care gap. It is time to broaden our gaze on cancer to include people with cancer. Caring should be taught, planned for, and rewarded, recognising and supporting the human need for agency, dignity and meaning. 

Health care is not really care without caring. 

Design the health system for caring  

Australian health policy includes several strategies that could bend the arc of health care toward caring, including the Australian Commission on Safety and Quality in Health Care recognising the value of assessing patient’s experience, the Australian Cancer Plan prioritising patient reported outcomes to identify needs that matter to patients and asking them directly, and the NSW Aboriginal Cancer Strategy that puts caring for kin and country at its core with emphasis on culturally safe practice and inclusion of Aboriginal voices and lived experience in decision-making. Yet these strategies are not yet systematically embedded in cancer practice. 

Internationally, the Lancet Oncology Commission has drawn attention to the global neglect of the human dimensions of cancer care, calling for greater research focus, education of health professionals, and system redesign that embeds incentives and accountability for caring. A United States study analysing narrative descriptions of clinical cancer encounters identified what made “a good oncologist” and included not just person centred care but meaningful relationships, authentic communication, kindness, empathy, humility and hope. These are all critical, teachable skills of caring that improve experience of cancer survivors. Caring also matters for health care workers, with greater compassion satisfaction associated with lower burnout. 

Cancer care is not unique — the care gap is a broader problem that impacts all branches of medicine and health. The cancer field has been a leader in quality improvement, service design and healthcare delivery, and it can be again when it comes to the care gap. It is time to broaden our gaze on cancer to include people with cancer. Caring should be taught, planned for, and rewarded, recognising and supporting the human need for agency, dignity and meaning. 

Health care is not really care without caring. 

Professor Bogda Koczwara AM is an internationally recognised clinician-researcher and a leading authority in cancer survivorship and supportive care. She is the inaugural Director of the Australian Research Centre for Cancer Survivorship (ARCCS), a partnership between Cancer Council NSW and UNSW Sydney.

Professor Phoebe Phillips is Associate Dean (Partnerships and Engagement) and Head of the Pancreatic Cancer Translational Research Group at UNSW Sydney; and Board Director, Cancer Council NSW. A translational cancer researcher whose work spans laboratory research through to clinical trials, she brings both professional expertise and lived experience as a patient and carer to her advocacy for improving cancer.

Dr Ben Bravery is Bowel Cancer Survivor, Psychiatrist and Author. Ben volunteers, advocates, writes and speaks about colorectal cancer, living with cancer, cancer in young adults, medicine and medical education.

Peter is from the Blue Mountains in NSW and diagnosed in 2021 with metastatic lung cancer.  The startling success of targeted therapy has meant that he is living well and highly motivated to contribute to the success of cancer research through well-informed consumer involvement.

Mrs Nyan Thit Tieu is a Breast Cancer Survivor, retired Operations Manager, of Adult Migrant English Service (AMES), Department of Education and Training and the Founder, & Chair of Sisters Cancer Support Group Inc. Illawarra NSW.

Julie McCrossin AM is a freelance broadcaster, podcaster and MC. Julie was treated for HPV-related, oropharyngeal cancer in 2013 and is a patient advocate.