There are so many questions that come with a cancer diagnosis. A family’s financial future shouldn’t be one of them.
Yet that was the reality for the family of a 72-year-old Sydney pensioner whose daughter had to withdraw money from her superannuation fund to help pay for his liver cancer surgery.
The man received a bill of several thousands of dollars for surgery done through the private health system – even though he didn’t have private insurance. His surgeon had told him he couldn’t get surgery quickly enough through the public hospital system, leading him and his family to believe the private system was their only option.
A Medical Professional Standards Committee has since found that wasn’t the case. The surgery could have been performed in the public system free-of-cost within 30 days. The immense financial impact on this family could have been avoided if they had been made fully aware of all treatment and care options and the associated costs beforehand — a process known as informed financial consent.
Unexpected cancer costs and "bill shock"
In this case, this family’s financial burden was largely the result of one doctor’s poor conduct. Complaints were made to the Health Care Complaints Commission, and the surgeon was reprimanded for unsatisfactory professional conduct in how he managed the decision to treat the man in the private hospital system.
But the problem of out-of-pocket medical expenses in Australia goes far beyond the actions of one doctor. Australians pay out-of-pocket for about 20% of health care costs, including for medications, testing, and doctor’s fees that aren’t fully covered by Medicare. That’s more than many comparable countries, and it’s expected to rise.
The cost of treatment and care can really add up for cancer patients, who face a complex and unpredictable illness that can require years of tests and treatments. The associated out-of-pocket expenses can lead to “financial toxicity” and “bill shock” that can impact their health and well-being. The McCabe Centre for Law & Cancer wrote about the issue of out-of-pocket cancer costs back in 2018, and the situation hasn’t improved.
But the burdens of out-of-pocket costs can be reduced when patients are empowered to make informed choices about their treatment and care options through informed financial consent. That is why Cancer Council, Breast Cancer Network Australia, CanTeen and the Prostate Cancer Foundation of Australia have jointly created the Informed Financial Consent Standard.
Launched on 26 October, this voluntary standard provides health professionals and health services with practical guidance on how to discuss the costs of treatment and care options with patients, and how to obtain patient consent before any chosen treatment and care is given. It acknowledges that discussing the costs of treatment is an essential component of quality care, and that health professionals are best placed to lead these discussions.
About informed financial consent
Informed financial consent is not a new idea. The expectation to obtain informed financial consent is outlined in health professional standards of practice, including the Medical Board of Australia’s Code of Conduct for Doctors. Failing to discuss the costs of treatment options and obtain consent to treatment decisions may be a breach of these professional standards, and could result in disciplinary proceedings and reprimand for health professionals – just like the Sydney liver surgeon.
Tarishi Desai, Acting Manager of
Treatment & Supportive Care
In that surgeon’s case, the Medical Professional Standards Committee found he failed to obtain informed financial consent and failed to consider the financial impact of not obtaining consent on his patient and his patient’s family. It found this behaviour was both unethical and unacceptably below the standards one would expect of a doctor under health practitioner regulation law.
Cases like this show that patients have a right to expect health professionals to discuss the costs of their proposed care with them. But they also show that some health professionals need more guidance on the potential financial impacts of treatment options, and how to discuss them with patients. The Medical Professional Standards Committee found that the Sydney liver surgeon “appeared unaware or disinterested in any of the alternative ways of financially assisting private patients without health insurance”.
This is where the new Informed Financial Consent Standard can make a difference. The standard aims to help doctors (and can be used by other health professionals) to meet their existing obligations around discussing the cost of care. It does so by setting out a series of principles for informed financial consent, describing the purpose of each principle, and detailing key tasks that individual doctors and health services can follow to make sure treatment fees and charges are understood by patients prior to treatment.
These key tasks include informing patients about Medicare rebates, the benefits and trade-offs of being treated in the private health system, and no- or low-cost alternatives available through the public system. Ultimately, it is the patient’s choice about how they are treated.
Empowering people with cancer and health professionals
Cancer Council is currently working with doctors and practice staff to develop resources to help implement the Informed Financial Consent Standard and ensure it benefits cancer patients, their families, and the dedicated doctors who treat them. For health professionals, the standard could offer more clarity and guidance in how to have difficult conversations with patients. Through use of the standard, it is hoped that regulators will see fewer complaints from patients about costs, bill shock, and a lack of informed financial consent.
This standard is one way to deal with the many problems associated with the costs of cancer care and there are further options which could be explored to reduce costs and bill shock.
But for people with cancer, uptake of this standard by health professionals could offer hope that the stress of cancer treatment and care won’t be compounded by financial distress about unexpected or unnecessary out-of-pocket costs. Armed with knowledge about the costs of their proposed treatment, and empowered by health professionals who obtain their consent for their chosen treatment and care options, people affected by cancer can better plan for and manage their cancer journey.
For financial burden information and support, call 13 11 20. More information about state/territory health complaints organisations is available from the Australian Health Practitioner Regulation Agency