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A provider prescribes a promising new medication and the patient is in complete agreement with the treatment plan. Weeks later during a follow-up appointment, the patient admits she never filled the prescription — and what she doesn’t say is that this decision was made at the drugstore counter, after learning the cost.
“Patients might have financial difficulties that they are embarrassed to share, or do not feel the healthcare provider would be open to listening to,” says Craig M. Klugman, PhD, a professor in the department of health sciences at DePaul University in Chicago.
Patients may find that the prescribed medication costs hundreds of dollars a month even with insurance coverage — or that they have to pay the cost in full because of an unmet deductible.
“It is not unusual for patients to have to decide between paying utility bills or rent, or buying their medications,” says Klugman.
Patients who don’t follow the provider’s recommended treatment plan often are labeled “nonadherent” in the chart — when in reality, they can’t afford the care. Stigmatizing patients as “noncompliant” is an outdated notion, says Klugman: “The concept comes out of the nursing literature, which defined ‘noncompliance’ as a deliberate spurning by the patient of a healthcare provider’s orders.”
The clear implication is that patients are choosing to oppose healthcare providers’ efforts. “Today, we use the term ‘nonadherence’ to show that this notion of deliberate defiance is not at the core of the modern concept,” says Klugman. However, even the term “nonadherent” carries a suggestion that patients are acting against the healthcare provider. “This is inherently paternalistic and judgmental,” says Klugman.
Healthcare providers have no legal obligation to ensure that patients receive and take their medications. “However, if the patient-provider relationship is one based on trust and compassion with a shared goal of helping the patient, then there may be an ethical obligation to go further,” says Klugman.
First, providers should not assume the patient is being deliberately belligerent. “Most likely, the noncompliance has nothing to do with the healthcare provider,” says Klugman.
After explaining the importance of the recommended treatment, the next step is to ask why the patient hasn’t followed the plan. If the answer is that the medication is unaffordable, a generic or cheaper drug can be offered instead. “Misunderstandings labeled as noncompliance are often a lack of communication,” says Klugman.
Even if a patient can’t afford the recommended treatment plan, some providers take offense. “If you simply do not connect with the patient in a way that you can unpack why he or she is not taking the drug, it might be better to consider transferring the patient’s care to another physician,” says Klugman.
High-deductible health insurance plans are increasingly common, especially among low-income Americans. Nearly 40% of U.S. adults had a high-deductible health plan in 2016, according to a report from the CDC’s National Center on Health Statistics.1 Privately insured adults with employment-based high-deductible plans were more likely than adults enrolled in traditional plans to forgo or delay medical care.
“Reasonable patients with plans like these may make informed and calculated decisions to forgo more efficacious but costly treatments in favor of less efficacious but less costly treatments,” says Benjamin Stoff, MD, MAB, a senior faculty fellow at the Emory Center for Ethics in Atlanta. Stoff also is an assistant professor of dermatology at Emory University School of Medicine.
In his own practice, Stoff sees some patients with severe psoriasis choose not to fill a prescription for a biologic, which is generally the most effective treatment, but by far the most costly. Instead, patients opt for a less-effective, cheaper drug. That is the patient’s prerogative, says Stoff: “In scenarios like this, lack of adherence to therapy on the part of the patient really represents an expression of that patient’s autonomy.”
Patients are making a reasonable value judgment that for them, the potential benefit of a medical intervention is not worth the financial cost.
“This judgment is similar to others made by patients,” says Stoff. For instance, it’s not uncommon for patients to decide that the side effects are not worth the possible benefit of a given medication.
“Healthcare providers need not insist that patients choose the most medically efficacious therapy in all circumstances,” adds Stoff. The informed consent process requires that providers elicit patient values relevant to medical decisions. Together, patient and provider come to a joint decision about what therapy best aligns with those values, has a reasonable likelihood of benefiting the patient, and limits harm.
“In order to mitigate the potential harm from high costs, physicians may have an obligation to work with their patients to find a medically effective and financially viable treatment,” says Klugman.
Newer drugs with sky-high price tags are unaffordable for many patients, insured or not. “The U.N. Declaration of Human Rights says that medical care is a human right. The high cost of these drugs in the U.S. may hinder practicing this right,” notes Klugman.
Comparing drug costs can be next to impossible for providers, because so many factors affect what the patient will pay. These include the size of the pharmacy (larger pharmacies often negotiate bulk discounts from suppliers), whether the patient has drug insurance coverage, whether a generic is available, how long the drug has been on the market, and even whether the manufacturer has recently been acquired by another company.
“Many drug companies have a retail price that may be higher than what most people pay, but offers an idea of what the drug costs compared to other drugs on the market,” says Klugman.
In any case, Stoff says a general discussion of cost is crucial to medical decision-making and informed consent for some people: “For those patients, healthcare providers should offer a range of reasonable treatment options at different cost points.”
1. Cohen RA, Zammitti EP. High-deductible health plans and financial barriers to health care: Early release of estimates from the National Health Interview Survey, 2016. National Center for Health Statistics. 2017. Available at: http://bit.ly/2ls8GCd. Accessed Jan. 10, 2017.
• Craig M. Klugman, PhD, Professor, Department of Health Sciences, DePaul University, Chicago. Phone: (773) 325-4876. Email: firstname.lastname@example.org.
• Benjamin K. Stoff, MD, MAB, Emory University Center for Ethics, Atlanta. Phone: (404) 712-8307. Email: email@example.com.
Financial Disclosure: Consulting Editor Arthur R. Derse, MD, JD, Editor Jill Drachenberg, Editor Jesse Saffron, Editorial Group Manager Terrey L. Hatcher, and Author Stacey Kusterbeck report no consultant, stockholder, speakers’ bureau, research, or other financial relationships with companies having ties to this field of study.