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Financial toxicity

Ethical considerations for nurses

Gallups, Sarah PhD, MPH, RN; Moore, Brittany LSW, OSW-C

doi: 10.1097/01.NURSE.0000577692.18934.ff
Department: ETHICS IN ACTION
Free

In Pittsburgh, Pa., Sarah Gallups is an assistant professor at Duquesne University School of Nursing and Brittany Moore is an outpatient oncology patient navigator at UPMC Magee-Womens Hospital.

The authors have disclosed no financial relationships related to this article.

NINA IS AN EXPERIENCED oncology nurse working in an outpatient breast cancer center. One of her first appointments for the day was a patient who had experienced multiple complications after her breast reconstruction surgery. As they entered the exam room, Nina congratulated the patient on her recent marriage and inquired about the woman's three small children. The patient happily reported on her family but began to share with Nina how her increase in household income had changed her insurance status. She no longer qualified for financial assistance programs. She previously had coverage for her breast cancer care through Medicaid, but now she pays an insurance premium of $300 per month for the Affordable Care Act (ACA) Marketplace plan because her husband's employer does not offer an insurance plan. The patient went on to tell Nina that with each additional surgery to address her complications, her out-of-pocket medical costs have increased to over $10,000. She and her husband were looking for ways to pay these costs and even considered forgoing some of her physical therapy treatments as part of her rehabilitation. Nina can hear anxiety and stress in the patient's voice, but what can she do?

Many patients with cancer face this problem. Financial concerns and out-of-pocket costs can impact a patient's desire to seek care and the outcomes of the care provided. This phenomenon is known as financial toxicity.1,2 In order to provide high-quality and ethical care, nurses need to both understand the nature of financial toxicity and be prepared to help. This article explores financial toxicity, its impacts, and ethical considerations for nurses.

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Burden of financial toxicity

Financial toxicity is a patient's excessive financial burden caused by out-of-pocket costs or costs associated with medical care that are not covered by an insurance plan.2,3 Patients undergoing cancer treatment and cancer survivors experience a higher risk of financial toxicity due to increasingly expensive advanced therapies and treatments. Many of these medical care costs shift to the patient in the form of higher premiums, deductibles, and copayments.2,3 In a systematic review of studies investigating financial toxicity among cancer survivors, researchers found that up to 48% of participants reported experiencing financial toxicity.4

Factors that influence a patient's risk for financial toxicity include sociodemographics, household income, preillness debt, assets, employment status, and level of health insurance coverage.1,2,4 Increased spending on healthcare costs can result in financial toxicity as a greater portion of a patient's income is dedicated to those expenses.3 Higher health spending may lead to increased medical debt, challenges in meeting expenses for basic needs such as food, housing, transportation, and childcare, and even bankruptcy. These consequences can take a heavy psychological toll.1,3

Furthermore, this burden may exacerbate existing cancer care disparities related to socioeconomic status as well as racial, ethnic, and cultural minority patient populations. In a study of women with breast cancer, Jagsi and colleagues found that 31.9% of White, 48.9% of Black, 49.7% of Hispanic, and 35.2% of Asian women reported at least some worry about their finances due to breast cancer or breast cancer treatment.5

Finally, research has started to uncover potential associations between financial toxicity and factors that increase mortality risk, including decreases in access and adherence to treatments, quality of life, satisfaction with care, and subjective well-being.1-4

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Ethical considerations for nurses

Nurses have an ethical obligation to provide both safe and quality patient care. In today's healthcare environment, nurses must also be willing to reevaluate what is traditionally considered care. The American Nurses Association Code of Ethics spells out the nursing profession's responsibility to prevent and address suffering and the burden of illness by integrating principles of social justice into practice and generating health policy.6

To address financial toxicity, nurses need to work alongside other healthcare professionals to develop innovative approaches to health equity in our healthcare systems, including addressing unjust systems and reducing healthcare disparities.6 This may even include the need for nurses to advocate on behalf of the patient to other healthcare providers about the patient's financial situation and the burden the continued cost of treatment might have on the patient.

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Patients and providers

Nurses must be prepared to integrate fiscal considerations into their responsibilities and obligations to patients and communities. Some commonly discussed interventions at the patient, provider, and systems level are discussed below. At the individual patient level, assessing a patient's risk for financial toxicity and using patient or financial navigators to provide financial information and assistance are important first steps. Financial toxicity is beginning to be considered an adverse reaction of cancer care. Financial toxicity should be assessed like pain, nausea, or any other adverse reaction to therapy.

An easy step for nurses would be to acknowledge that this is a difficult topic for patients to broach and promote patient engagement in cost discussions. Simply ask if they have any financial concerns.7 Healthcare professionals should engage patients in shared decision-making by discussing costs directly with them, especially when expensive tests or treatments offer little benefit.3 Nurses and other clinicians can also promote patients' cost-related health literacy, especially their knowledge surrounding health insurance.3

Programs utilizing financial or patient navigators to assist patients with access to care are promising options. Patient navigators help patients identify financial barriers and connect them with financial resources such as enrollment in an insurance plan and assistance with premiums, copayments, and medication costs. Some financial assistance programs can help patients with indirect expenses; for example, the cost of transportation or medical equipment.8

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Health insurance reform

Access to health insurance alone does not eliminate the risk of financial toxicity, so other health insurance reform approaches must be considered. One potential approach is to eliminate copayments for adherence to evidence-based critical pathways for cancer care.2 Critical pathways could also help reduce costs by minimizing the use of unnecessary and/or costly treatments.9,10

Another approach is to allow the use of pharmaceutical company coupons or patient-assistance programs for patients with Medicare.2 Federal and state mandatory coverage requirements for insurers, originally developed to prevent insurance companies from refusing to cover expensive FDA-approved treatments, prohibit price negotiations and eliminate decision-making by insurers based on the value of the therapy. Removing mandatory coverage would allow more adequate comparisons of medications or treatments based on price and outcomes.7

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Cost containment at the systems level

Advocating for cost discussions with patients is important, but clinicians must also advocate for more systems-level approaches to cost containment. Many experts are advocating for improved price transparency in healthcare. Price transparency will allow patients to see the cost of a treatment and estimate their expected out-of-pocket costs.4,11 While there is insufficient evidence in oncology care to determine how this change might affect patient or clinician choices, potential positive consequences include more informed decision-making by providers and patients as well as the potential to contribute to price reductions.2,11

Another potential suggested cost-containment measure is value-based pricing, which focuses on patient outcomes of the care provided as opposed to the amount of healthcare services delivered. Value-based pricing aims to incentivize patients with reduced cost-sharing by utilizing higher value therapies or services.2-4,7 Cost-sharing refers to the amount patients pay out of pocket that insurance does not cover, including deductibles, coinsurance, and copayments. There is some positive evidence for value-based pricing for other chronic conditions, such as diabetes or hypertension, but little is yet known about the impact value-based pricing might have in oncology care.2

Nurses like Nina must begin by recognizing financial toxicity as a clinically relevant problem. Future work in nursing surrounding financial toxicity will need to include developing validated clinical assessment tools and support systems to assist with financial strain, collaborating with supportive care team members (such as social workers, patient navigators, and financial counselors) on treatment-related financial issues, and training to enhance nurses' confidence and ability to discuss patients' financial considerations as a routine part of cancer care.12 As practitioners of holistic patient care, nurses find themselves in an ideal place to lead these conversations.

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REFERENCES

1. De Souza JA, Yap BJ, Wroblewski K, et al Measuring financial toxicity as a clinically relevant patient-reported outcome: the validation of the Comprehensive Score for Financial Toxicity (COST). Cancer. 2017;123(3):476–484.
2. PDQ Adult Treatment Editorial Board. PDQ Financial Toxicity and Cancer Treatment. National Cancer Institute. 2019. http://www.cancer.gov/about-cancer/managing-care/track-care-costs/financial-toxicity-hp-pdq.
3. Zafar SY. Financial toxicity of cancer care: it's time to intervene. J Natl Cancer Inst. 2015;108(5):pii: djv370.
4. Gordon LG, Merollini KMD, Lowe A, Chan RJ. A systematic review of financial toxicity among cancer survivors: we can't pay the co-pay. Patient. 2017;10(3):295–309.
5. Jagsi R, Ward KC, Abrahamse PH, et al Unmet need for clinician engagement regarding financial toxicity after diagnosis of breast cancer. Cancer. 2018;124(18):3668–3676.
6. American Nurses Association. Code of Ethics for Nurses with Interpretive Statements. Silver Spring, MD: American Nurses Association; 2016.
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9. Feinberg BA, Lang J, Grzegorczyk J, et al Implementation of cancer clinical care pathways: a successful model of collaboration between payers and providers. Am J Manag Care. 2012;18(5):e194–e199.
10. Goulart BHL. Cancer care pathways: hopes, facts, and concerns. Am J Manag Care. 2016;22(5, special issue):sp174–sp176.
11. Robert Wood Johnson Foundation. How price transparency can control the cost of health care. 2016. http://www.rwjf.org/en/library/research/2016/03/how-price-transparency-controls-health-care-cost.html.
12. Carrera PM, Kantarjian HM, Blinder VS. The financial burden and distress of patients with cancer: understanding and stepping-up action on the financial toxicity of cancer treatment. CA Cancer J Clin. 2018;68(2):153–165.
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