Weeks after my father passed away from cancer in 2010, my newly widowed mother received a bill for $11,000.
Insurance retroactively denied a submitted claim for one of his last chemotherapy treatments, claiming it was “experimental.” All of the prior identical chemotherapy treatments he had received had been covered, and the doctors had received pre-authorization for the treatment.
Was it suddenly experimental because it was not prolonging life anymore? Was it a clerical error, with one insurance claim submitted differently than the others?
As my mother and family grieved, we had this bill looming in the backs of our minds. We took turns calling the insurance company and the hospital billing office, checking websites, and deciphering billing codes on various pieces of paper.
By the time patients receive these delayed bills, they may be unable to recall the particular visit in question, which makes it exhausting for them to manage their finances and diagnosis. The problem is so significant that the National Cancer Institute has a term for this:
financial toxicity.A Scary Disease, an Opaque System
In the United States, cancer is
one of the most expensive diseases to treat; only heart disease costs more. This cost burden is often passed on to patients.
And to make matters worse, lack of transparency about cost and coverage can be confusing. Seemingly arbitrary changes in insurance decisions can contribute to patients’
financial toxicity, or the hardship, psychological stress and behavioral adjustments associated with costs of care. For example, some patients have unexpected
bills after they receive a diagnosis or abnormal result on a screening test.
In these cases, care that was previously categorized as preventive (and free from out-of-pocket costs) can become a diagnostic or surveillance test, with associated fees. Other patients are surprised when they receive a bill for physician time as well as a
hospital facility fee. It is difficult for patients to keep track of all of these changes and adjust cost expectations.
A patient participant in a
study we conducted talked about the time she spent navigating the billing process, commenting, “The billing was extremely daunting. I kept a three-ring binder that was three inches thick ... tried to match things up. It was a mess.” That time and effort could be spent healing or engaging in valued activities, she relayed to us.
Hidden Costs of Care
In addition to direct costs of care, there are indirect costs of care, such as fees for transportation, parking, housing when needed, and the time spent managing the financial aspects of care on top of treatment.
My father had to pay between $18 and $30 per day just to park at the hospital in New York City where he received his treatments, depending on how long he stayed. This parking fee was on top of tolls ($15) and the time spent traveling to and from the hospital. For him, this meant anywhere from 45 minutes to two hours, depending on traffic and road conditions. Transportation and parking costs are typically not covered by insurance, though some hospitals, health centers, and nonprofit organizations
offer assistance with these indirect care costs.
Many other patients have to take time off
work while they are undergoing cancer treatment or follow-up care. Cancer patients who are unemployed may even have
lower survival rates. One patient in
our study commented, “It takes me two-and-a-half hours to get here. I was coming every month, then every two months. Now I’m every three months. Eventually, I go to six months, but I have to take off work every time to come.” Another patient stated, “My vacation and sick time ran out ... I had to go on disability.”
Policy Suggestions
Although addressing out-of-pocket care costs for patients requires multiple systemic changes, there are strategies that can help.
First, patients and their clinicians can discuss the costs of care and create
cost-saving strategies. Patient-clinician cost discussions can reduce overall costs to
patients, but many clinicians are hesitant to talk about costs with
patients.
Health care institutions may be underutilizing social workers, financial navigators, and other care center resources. These people, with adequate training that promotes patients’ access to care and assistance, can help manage a patient’s out-of-pocket expenses. This process can yield positive outcomes for both patients and
health care institutions.
Less May Be More
Sometimes, treatments are not needed and may add a burden to patients. For example, a
shorter duration of radiation for early-stage breast cancer works just as well as longer durations. And chemotherapy might not benefit some patients at
earlier stages of cancer or some
older adults, and some scans
may be excessive.
Until we change norms and engage patients, clinicians, and systems to weigh the pros and cons of care that is considered unnecessary or even harmful, many patients and clinicians might fear less aggressive treatment. There’s also the Choosing Wisely
campaign which is designed to help by summarizing evidence in plain language and highlighting commonly overused interventions.
Finding sustainable solutions to reducing cancer-related financial toxicity requires a collaborative effort between doctors, patients, policymakers, health insurance companies, and health care institutions. Easing the cognitive burden associated with the financial stress that comes with cancer care can lead to better outcomes for cancer patients’ health and quality of life.
Research coordinator Nerissa George, MPH, contributed to this article.
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