Ethical Approaches Can Protect Patients from Financial Harm

By Stacey Kusterbeck

When patients cannot afford medications, clinicians face a challenging ethical dilemma. “Cost discussions should be a part of the conversation when medications are being prescribed, just as medication side effects are discussed,” argues Birju Rao, MD, MSc, a cardiology fellow at Emory University School of Medicine. Rao co-authored a recent paper that addressed decision-making related to cost of medications for patients with heart failure.¹ “The benefits of these medications need to be weighed against their cost. However, this is nuanced, and involves integrating many complex factors,” says Rao. Clinicians must consider the patient’s prognosis, values, and preferences.

To make the situation more ethically challenging, clinicians probably do not really know what the medication will cost the patient. “Getting accurate cost information is challenging. But this is a potentially surmountable challenge with a greater push towards price transparency,” says Rao.

At the same time, physicians are striving to meet clinical quality metrics, based on the percentage of patients who are prescribed guideline-directed medical therapy. Those quality metrics do not factor in financial factors, such as patients who cannot afford a specific medication and need an alternative. “Our data show that quality metrics do not capture the complexity of patient care,” says Rao. “That being said, developing perfect metrics are challenging. Certainly, metrics that focus on engaging patients may help incentivize shared decision-making.”

For patients with chronic pancreatitis, treatments like pancreatic enzyme replacement therapy often are financially inaccessible. “The high costs associated with managing chronic pancreatitis could lead to maladaptive behaviors, such as cost-related medication nonadherence and delayed treatment, potentially exacerbating the condition and worsening outcomes,” says Radmila Choate, PHD, MPH, a research assistant professor in the Department of Epidemiology at University of Kentucky College of Medicine.

Choate and colleagues conducted a literature review to examine what is known currently about the financial burden faced by patients with chronic pancreatitis.² “Our motivation for this review stemmed from the growing recognition of ‘financial toxicity’ in cancer research and its relevance to chronic diseases, such as chronic pancreatitis,” says Choate. The economic challenges associated with managing chronic diseases are well-documented.^3,4 Despite this, the researchers found a striking lack of studies focusing on the financial impact of chronic pancreatitis. “This gap is particularly noteworthy given the complex and often costly nature of chronic pancreatitis management,” says Choate.

The study revealed a lack of validated tools to quantitatively measure the financial burden of patients with chronic pancreatitis. “Clinicians face several important ethical considerations. First, clinicians must recognize financial toxicity as a clinically relevant issue that can impact treatment adherence and health outcomes,” says Choate.

Clinicians can connect patients with resources for insurance enrollment and assistance with premiums, copayments, or indirect expenses like transportation. Clinicians have an ethical obligation to promote patient engagement in cost discussions and facilitate informed decision-making, adds Choate: “This empowers patients to make financial choices aligned with their values and circumstances.”

There is growing awareness of end-of-life financial hardship for patients with cancer and their caregivers. “It is easy to imagine how some of those challenges would get worse the further people get into treatment, as patients and their families take prolonged absences from their jobs, deplete their savings, while at the same time paying substantial amounts for treatment,” says Emily Johnston, MD, MS, assistant professor in pediatric hematology-oncology at UAB Heersink School of Medicine. Johnston and colleagues conducted a literature review for studies since 2000 on end-of-life financial hardship for cancer patients and their families.⁵ Some key findings from the analysis of 27 adult and four pediatric studies:

• At the end of life, adults with cancer and their caregivers faced significant financial hardship.
• Caregivers faced financial hardship due to changes in employment.
• For younger caregivers and patients who are low-income, rural, uninsured, with certain cancer types, or with high symptom burden, financial hardship may be higher.

Financial issues affected end-of-life decision-making for families. “As a society, we have to decide if we are OK with people with cancer, including children, and their families, falling into poverty because of their cancer — and if we want people to have to make decisions about end-of-life care because of finances,” says Johnston. For instance, some children died in the hospital even though the family wanted the child to die at home, specifically because of inability to afford caregiving costs. “We cannot provide justice-based care unless we address financial toxicity,” says Johnston.

However, addressing financial toxicity takes a team. “Clinicians rarely have the time, training, or knowledge of resources to address these issues,” says Johnston. Therefore, it is essential for social workers, financial navigators and others to collaborate. There also is an important role for ethicists in the hospital setting. “Ethicists can advocate for policies to ensure financial toxicity is not leading to unjust care — and can help clinicians deal with moral distress when financial toxicity leads to lower quality end-of-life care,” offers Johnston.

One in three long-term survivors who underwent major pancreatic surgery for cancer experienced financial distress, another study found.⁶ Most (85.9%) of the 137 study participants did not discuss financial implications with clinicians. “When performing surgical procedures, it’s essential not only to consider traditional surgical outcomes, such as complications, but also to address patient-centered outcomes. This includes outcomes such as quality of life after surgery, as well as the financial impact of the treatment on both the patient and their family,” according to Hala Muaddi, MD, PhD, the study’s lead author and a hepatopancreatobiliary fellow at Mayo Clinic. Proactively addressing the financial implications of treatment can alleviate some of the stress on patients, improving their overall well-being. “This approach aligns with providing patient-centered care, ensuring that treatment plans account for not only the clinical outcomes but also the financial and emotional aspects of a patient’s cancer journey,” says Muaddi.

Employment disruptions and lost household income following a cancer diagnosis and treatment can result in lasting financial hardship for patients and their families. “With nearly half of cancer survivors of working age and not yet age-eligible for Medicare coverage, understanding the effects of cancer diagnosis and treatment on employment and employer-based health insurance coverage is essential,” says Robin Yabroff, PhD, MBA, scientific vice president of Health Services Research at the American Cancer Society.

In a recent paper, Yabroff and colleagues estimate the adverse financial consequences of a cancer diagnosis in terms of household income, loss of income from unpaid time off work, and loss of health insurance coverage.⁷ “When combined with high out-of-pocket costs for cancer care, nearly 60% of working age cancer survivors report at least one type of medical financial hardship, such as being unable to afford medical bills, distress and worry, or delaying or forgoing needed care because of cost,” says Yabroff.

REFERENCES

1. Rao BR, Dickert NW, Morris AA. Ethical complexity of medical treatment affordability and clinical trial diversity in heart failure. Circ Cardiovasc Qual Outcomes. 2024;17(2):e010227.
2. Choate R, Wasilchenko C, Thakur K, et al. Financial toxicity in patients with chronic pancreatitis. Pancreas. 2024;53(9):e774-e779.
3. Becker NV, Scott JW, Moniz MH, et al. Association of chronic disease with patient financial outcomes among commercially insured adults. JAMA Intern Med. 2022;182(10):1044-1051.
4. Jeon YH, Essue B, Jan S, et al. Economic hardship associated with managing chronic illness: A qualitative inquiry. BMC Health Serv Res. 2009;9:182.
5. Salazar MM, Khera N, Chino F, Johnston E. Financial hardship for patients with cancer and caregivers at end of life in the USA: Narrative review. BMJ Support Palliat Care. 2024;14(1):25-35.
6. Muaddi H, Zironda A, Zhang C, et al. Financial toxicity of long-term survivors who underwent pancreatoduodenectomy for pancreatic ductal adenocarcinoma. J Surg Oncol. 2024; Sep 5. doi: 10.1002/jso.27871. [Online ahead of print].
7. Yabroff KR, Doran JF, Zhao J, et al. Cancer diagnosis and treatment in working-age adults: Implications for employment, health insurance coverage, and financial hardship in the United States. CA Cancer J Clin. 2024;74(4):341-358.