Changing the Culture of Acceptability of Financial Sacrifice in Cancer Care
In September 2018, Journal of Oncology Practice published an article titled, “Going for Broke: A Longitudinal Study of Patient-Reported Financial Sacrifice in Cancer Care.” The study found that a significant proportion of insured patients with cancer are willing to make major personal and financial sacrifices to receive optimal care.
Journal of Clinical Pathways spoke with Fumiko Chino, MD, Duke University Medical Center, to delve further into the study’s design, findings, and larger implications.
Your study sheds light on an often disregarded trend in cancer care from the patient perspective. Could you briefly share what you found?
Dr Chino: We are in an evolving paradigm in which costs are becoming a larger issue for cancer treatment in the US. We know costs are high on the systems level, we know they are high on the hospital level, and we know they are high on the patient level. Most of the reporting on this subject has existed at the global cost level. We know that, for example, spending per patient on cancer care is really shooting through the roof with medications becoming more and more expensive. Almost all new anti-cancer therapy approved by the Food and Drug Administration (FDA) is at a level of nearly $100,000 a year or more in terms of their billed cost.
Our study focuses on the patient level because cost is a potential barrier that is affecting patients in terms of their ability to receive care, their quality of life while receiving care, and even beginning treatment or tolerating it well. We wanted to focus on patient-reported outcomes, which is increasingly important because the oncology care community as a whole is realizing that we cannot have a top-down look; we need to see where patients are coming from in terms of barriers to receiving adequate and curative treatment for their cancer.
With this in mind, we performed inpatient interviews/surveys for patients who were receiving cancer treatment. They had to be receiving treatment for over 1 month before we talked to them. The survey assessed their costs, their potential personal financial sacrifices that they made, and also their willingness to make those sacrifices. Example questions include:
- “How much are you willing to pay out of pocket for your cancer treatment?”
- “Have you used all or a portion of your savings to pay for cancer care?”
- Agree/disagree statements like “To afford my cancer treatment, I am willing to sell my home.”
Three months later, we re-interviewed them with the same questions to determine how their attitudes changed over time. We also asked how their actual sacrifices changed over time to address the well-known, well-established idea that throughout cancer treatment, although costs may change on an incremental basis, the cumulative effects can be quite toxic for patients. The overall idea was to assess true financial toxicity over time and to see what their attitudes were towards these costs.
What we found was that patients were making significant personal and financial sacrifices to receive their care. They were having to use their savings, they were going into debt, they were having to cut back on essential (eg, vacations, leisure) and non-essential things (eg, food, clothing). We were surprised with how many patients were willing to make extreme sacrifices; they expressed agreement that these sacrifices were aligned with what they thought was appropriate for receiving their care. For example, a significant portion of patients were willing to declare personal bankruptcy or sell their home in order to receive their care. It was truly shocking for us to see these results because we often have the idea that patients are willing to make personal sacrifices and that care is essential for them, but no one had ever actually asked patients about their attitudes and their perceptions toward their sacrifice.
One of the findings from your study was that patient attitudes towards personal and financial sacrifice really did not change much over time. Why do you believe this was the case?
Dr Chino: I think it is hard to truly know for each individual patient. However, I feel that within cancer care, we have room to improve in terms of engaging in difficult conversations regarding prognosis and reasonable expectations for treatment. At the end of our study, approximately 25% of patients were in debt and more than 50% of patients had used their savings. It is worth noting that among our patient population, over 75% did not have curable cancers. In this unfortunate, regular situation for many patients, they have to decide between their money or their life. They are not making these sacrifices in order to save their life; they are only making these sacrifices to prolong their life. The treatments could extend their life by months, maybe years, but not rid them entirely of their disease.
These are difficult but necessary conversations to have. The goal is always to have patients be fully aware of the intent of their treatment and whether cancer “cure” is even a possibility. There is a known disconnect between what doctors say is the intent of therapy and what patients perceive as the intent of their therapy. Providers need to be better at allowing for shared decision-making and patient-centered care. Our study sheds light on the fact that patients are willing to make sacrifices, but our concern is that they may not have all of the necessary information to make a truly informed decision.