Medical Bill

In recent years, the term “financial toxicity” has found its way into the clinical lexicon. It is not a new concept that people who experience serious illnesses often face major disruptions to their financial status and lives, including bankruptcy, wiped out savings and huge debts. Rather it is the idea that the financial effects of disease and its treatment should be considered as a form of toxicity like other side effects--and that cost of care discussions should be incorporated into the treatment decision making process. Patient Advocate Foundation (PAF) CEO, Alan J. Balch, Ph.D. sums it up this way: “Cost of care is a critical component in informed, shared decision making. Discussing the financial impact of treatment should be as standard, as important as talking about the benefits and potential side effects of treatment.”

PAF surveys consistently reveal that more than 70 percent of patients want to have discussions about the cost of their care with their health care providers. While this is a substantial majority, what about the approximate 30 percent who do not want to discuss financial concerns? How do we address the reservations that many patients express about the potential implications of these conversations? Clinicians must screen for cost of care issues in ways that are timely, useful to patients and providers, and sensitive to perceived barriers to talking about issues related to both direct and indirect costs. Direct costs might include: medicines, appointments and procedures. While indirect costs include transportation and parking at appointments, unpaid time off work, childcare, and being unable to pay for everyday expenses. The PAF experience in serving over 150,000 patients and caregivers a year is just one source that confirms that having to make terrible choices like filling your prescription or buying groceries is the reality that too many patients from a broad spectrum of backgrounds confront.

Recently, NPAF completed a project funded by the Robert Wood Johnson Foundation, in partnership with Avalere Health that examined methods of incorporating and assessing the value of cost of care conversations into clinical practice. As part of that work, we conducted surveys, and held focus groups and two virtual community meetings, one with patients in the Mississippi Delta and the other with patients from Chicago. In those discussions, participants voiced concerns that talking about anything related to money or financial worries might result in getting lower quality care, in terms of actual treatment and compassionate care. Tammy Taylor, D.N.P., a nurse practitioner from Mississippi noted, “It’s a very thin line, I have to be careful whenever I ask about cost of care issues, especially at the beginning. I don’t want patients to think that I am totally focused on their ability to pay rather than getting them the right treatment.”

This perception is particularly prevalent among patients who are on Medicaid or are underinsured. They articulate examples of getting less effective treatment, having difficulty accessing specialists, and even of receiving care in inferior facilities. They believe that discussing their financial status is a barrier to optimal treatment not an opportunity to identify helpful resources or more affordable treatment options. In areas such as the Mississippi Delta, where patients do not have access to expanded Medicaid and often live in deep poverty, people see financial screening as blocking access to any care. For example, patients who lack insurance coverage are asked to pay upfront and when they are unable to do so are turned away or have to, in their words, “negotiate” access to their physicians.

For other people, even those with insurance, the resistance stems from a reluctance to talk about something they perceive as “personal” with their doctors. They may be open to discussing the actual costs of care while avoiding anything that touches on their own financial status.

So, what can be done to reconcile the clear need to screen for and address cost of care issues with the very real patient-centered obstacles that can prevent or misdirect these conversations? The answers lie in better education and training for both patients and providers, as well steps to standardize and normalize the process. Patient-oriented approaches could include:

  • Better understanding of cultural and socioeconomic factors that influence how people think about discussing their financial status, including issues expressed by diverse communities.
  • Involving patients in the process of developing and evaluating screening measures for cost of care.
  • Asking everyone the same questions. If screening is universal and incorporated into the normal, expected clinical interaction, it is far less likely to engender negative responses.
  • Realizing that in today’s world of budget insurance plans, high deductibles and copays, even people who are insured often experience serious financial impact when they go through a serious or extended illness.
  • Assessing patients’ financial concerns throughout the treatment process. Circumstances and attitudes change as a person progresses through an illness. It is critical to make sure cost of care discussions happen at every health care decision point, not as a one-off at the initial diagnosis.
  • Providing better information and tools about actual costs and available resources to help mitigate those costs to patients and providers at the time when they are considering treatment options and making decisions.

In part two of this post, we will look at cost of care discussions from the provider perspective. You can find more information on the cost of care work done by Robert Wood Johnson Foundation here.

Author, Committee Member, Member

Gwen Darien

Executive Vice President - National Patient Advocate Foundation

Gwen Darien is the executive vice president of the National Patient Advocate Foundation. A three-time cancer s... Read Bio


Chris Wilson, M.A., M.S.

Vice President for Advocacy Communications - the National Patient Advocate Foundation

Chris Wilson, M.A., M.S., is vice president for advocacy communications for the National Patient Advocate Foun... Read Bio

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