The higher the financial distress experienced by a patient with cancer, the lower their health-related quality of life. Some statistics even report that patients demonstrate more anxiety over the cost of their treatment than over dying of their disease, according to Dan Sherman, MA, LPC, from Mercy Health Saint Mary’s in Grand Rapids, MI. But it does not end when the cancer treatment is over. Financial toxicity has been linked to cancer survivors delaying care, skipping follow-up visits, and discontinuing medications, not to mention the overwhelming psychological impacts of carrying such a financial burden.
“Financial toxicity is multifaceted. The complexity of health insurance, lost wages, high drug prices, ‘middle men’ in the insurance industry, lack of knowledge on the patient end, provider charges, and the billing process all can make your head spin,” he said. “We live in one of the most prosperous countries in the world, and yet financial toxicity and access to care remains a serious issue.”
Although there is no single solution to reduce the financial burden of cancer care, certain strategies can alleviate this devastating load for patients. At the 2020 Oncology Nursing Society Bridge Virtual Conference, Mr Sherman and Darcy Burbage, DNP, RN, AOCN, CBCN, provided an in-depth overview of financial toxicity in cancer care, along with resources that can be employed in clinical practice.
“Oncology nurses at every practice level have a role in supporting patients with their financial needs as they move through their cancer journey, from diagnosis through treatment and survivorship, as well as those living with metastatic cancer and those who are transitioning to end-of-life care,” said Ms Burbage, an oncology clinical nurse specialist in Newark, DE. “As oncology nurses, our patients look to us as trusted and knowledgeable experts about their care, so we need to know how to address this important issue. It’s pretty clear that the work surrounding financial toxicity needs to move from describing the problem to actually intervening and helping our patients.”
The cost of cancer care can have a devastating impact on patients and their families and may lead to considerable debt or even bankruptcy. Financial toxicity can also affect a patient’s quality of life and access to medical care if he or she starts trying to save money by avoiding doctor visits or skipping medication doses. Having insurance does not exempt patients from financial distress due to cancer, as individuals from all socioeconomic backgrounds experience this burden due to factors like high out-of-pocket expenses, copays, deductibles, and lost income.
“The economic burden and growing significance of the high cost of treatment has steadily increased in recent years and continues to rise with newer treatments such as immunotherapies, as well as with the ongoing cost for patients on maintenance therapies,” she said. In addition to the cost of cancer itself, living expenses—such as mortgage/rent, transportation, and childcare—are also impacted by the cost of cancer treatments.
One huge barrier for patients is the lack of consistency (ie, training, certification, and standards) in the provision of financial navigation services. According to Mr Sherman, this work is not easy, and it does require a high level of knowledge around the inner workings of these systems within the field of healthcare. He recommends training opportunities for oncology providers, such as the Association of Community Cancer Centers Financial Advocacy Bootcamp, local state health insurance assistance programs, and organizations like Triage Cancer and the NaVectis Financial Navigation Training Program.
“Other issues are related to a lack of cost transparency,” said Ms Burbage. “For example, there may be a facility fee, a technical fee, and a clinical fee for the same exam. In addition, many of the resources that exist are limited to uninsured or underinsured patients, and clearly patients with insurance need assistance as well.” Many patients even fear bringing up financial concerns to their providers, as they worry it will result in them receiving lower-quality treatment.
Ongoing financial assessment throughout the cancer continuum is essential, as a patient’s circumstances change over time. Additionally, oncology nurses should normalize patient concerns by including financial questions as part of a holistic assessment, and they should advocate for policies that address the many underlying causes of financial toxicity. Many institutions are now also incorporating insurance/financial information into multidisciplinary tumor boards; this can help to begin the discussion around incorporating patient goals and values into the decision-making and planning process.
“Because of our unique relationship with our patients as oncology nurses, we’re usually the first person to know that they’re experiencing financial concerns,” she said. “Our role is to assess their situation and connect them to the right person and program in our practice. Most often it’s a social worker or other community resource, or a financial navigator, if we’re lucky enough to have one.”
Addressing Financial Toxicity
According to Mr Sherman, financial toxicity should be addressed proactively with patients who are underinsured and poised to incur a significant out-of-pocket responsibility, just as a known toxicity from treatment, such as nausea, is proactively addressed.
Generally speaking, 3 different approaches are used in the United States to address financial toxicity. First, financial counselors, individuals who possess a high level of expertise in enrolling patients on Medicaid or helping them to find charity programs. Second, social workers and financial advocates help patients with copay assistance and to find charitable patient assistance programs (ie, CancerCare, Good Days, HealthWell Foundation), and also assist them with their basic needs while going through cancer treatment. And third, financial navigators, members of the multidisciplinary team who are actively involved in a patient’s treatment plan, “navigate” patients through the process of insurance optimization and help them to understand our complex health insurance landscape.
“Recommend to senior management the benefits of having a trained financial navigator on staff,” said Ms Burbage. “The position pays for itself.”
Even though these interventions have led to great strides in helping patients navigate this complicated issue, financial toxicity continues to rise, largely due to the fact that the majority of these interventions are for pharmaceutical products only. “We know that patients have many more out-of-pocket expenses than just pharma products—they need radiation, surgery, PET scans—the list goes on and on and on,” Mr Sherman said. So before intervening with the use of external assistance programs, he encourages providers to first tackle any insurance issues to optimize a patient’s coverage.
When addressing financial toxicity, Ms Burbage remembers the “3 R’s” of financial assessment: Recognize, Recommend, and Refer. Recognize that financial toxicity is another long-term effect of cancer that needs to be addressed, recommend that patients keep track of everything related to the cost of their treatment (encourage them to request a case manager through their insurance company to help them understand their individual policy), and finally, refer patients to invaluable resources such as social workers, case management, billing departments, and financial navigators (if an institution is lucky enough to have one).
“If we’re going to treat financial toxicity, the financial navigator needs to be a part of the team,” added Mr Sherman. “They need to be fully aware of what’s going on with a patient from a diagnosis and prognosis standpoint and should be aware of the treatment plan and duration. All of those issues and many more factor into what that particular financial solution will be for that particular patient.”