Ethics Forum: To Test or Not to Test?

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“Maria” is a 54-year-old woman with seropositive rheumatoid arthritis, as well as hypertension and hyperlipidemia. She is a new patient in your clinic following a move across the country to live with her children on a farm in a rural area of the Midwest.

At her first visit, three months ago, you and Maria agreed—through shared decision making—to continue her on methotrexate with daily folic acid supplementation. However, because her disease activity was higher than desired, you mutually agreed to increase her dose of metho­trexate to 25 mg weekly from 20 mg weekly. Instructions for monthly monitoring of liver function, blood counts and other tests were provided to the patient and her local laboratory.

At follow-up in three months’ time, Maria appears in good spirits and has no joint tenderness or swelling. She is satisfied with the degree of control of her rheumatic disease. However, the lab has not sent you any reports since her first visit to your clinic. You ask if she has been to the laboratory to have the tests you ordered, and she replies “no”; she considers them “a real headache.”

She insists on continuing methotrexate, but is equally insistent that she does not want to have routine tests because they “always come out fine.”

At the Ethics Forum

• Is it ethical to continue methotrexate monotherapy in this patient?
• What ethical principles are relevant to this vignette?
• What is the ethical way to resolve this dilemma?

Discussion

We are fortunate to live in an age in which multiple pharma­cological treatments for rheumatic diseases are widely available. However, each disease-modifying anti-rheumatic drug (DMARD) carries its own risks and benefits. To negotiate these risks and benefits, you must engage in shared decision making with the patient.¹ An important part of shared decision making in rheumatology involves discussions and agreement about laboratory and other monitoring to minimize the risks of adverse effects.

Ethical Framework

To resolve this ethical dilemma, it is important to frame it in a way that is as neutral and objective as possible. One common framework, espoused by Tom Beauchamp and James Childress, allows ethical dilemmas to be analyzed as the result of interactions between four values:²

1. Respect for autonomy: The patient has the right to choose or refuse their treatment;
2. Beneficence: The physician should act in the best interests of the patient;
3. Nonmaleficence: The physician should not cause harm to the patient; and
4. Justice: The physician should aim to distribute scarce health resources equitably.

This case, as with many ethical dilemmas, touches on all four of these values. Con­trasting and weighing these values in the proper context of this situation represents one way to resolve this ethical dilemma.

Respect for Autonomy vs. Nonmaleficence

One of the evident conflicts among these four values is between respect for autonomy and nonmaleficence. Maria has made a decision that she wants to continue her methotrexate. She is aware of the risks of not monitoring and has weighed them against the benefits of well-controlled disease activity. Her calculation is that the benefits of taking methotrexate outweigh the risks. Meanwhile, to her, the risks of lab monitoring outweigh its benefits.

As a physician, you recognize that metho­trexate may harm Maria if she does not have routine laboratory monitoring.³ From your perspective, although there are clear benefits to continuing methotrexate, real risks exist that Maria may not be factoring into her decision.

How can you get past this impasse?

Avoid Paternalism

At first glance, it may seem self-evident that nonmaleficence outweighs autonomy. After all, very real harms can come with methotrexate, especially when liver function and blood counts are not monitored. You may recall the first rule of medicine is primum non nocere—first, do no harm.⁴ Certainly, insisting on lab monitoring to prevent adverse effects qualifies under that principle.

However, this impulse should be tempered by an understanding that such rigid adherence to this perspective may very easily veer into paternalism—the belief that patient autonomy should be limited to promote good.⁵ Although often well intentioned, paternalistic behavior in healthcare has often been used to justify questionable ethical behavior on the basis “the physician knows better.”

To resolve this in a nonpaternalistic manner, a more empathic response is warranted.

Embrace Beneficence

Even though this vignette presents a lot of information, a major piece of information that is lacking is why Maria considers lab tests “a real headache.” Like all of us, Maria carries with her a set of expectations based on her experiences and outlook, and apparently, her tests have “always come out fine.” But perhaps there is more to the story.

To resolve this dilemma, you must delve into why testing is, in her words, “a headache.”

Maybe she has experienced technical difficulty in obtaining the monitoring labs, such as transportation, long lines or difficulty in obtaining blood. Does Maria have a fear of needles that she is reluctant to share? Is there an underlying anxiety of what may happen if the tests are abnormal?

Embracing empathic responses is essential to exploring these and many other questions, as well as essential to upholding beneficence. Perhaps by determining the root cause of her reluctance to have her blood drawn, the physician can be in a position to not only resolve the ethical dilemma but also advocate and advance her interests in other spheres as well.

What about Justice?

This vignette also touches on the ethical principle of justice. With respect to medical ethics, justice refers to the fair and equitable distribution of health resources.⁶ If there is a financial concern about the cost of laboratory testing, perhaps the ethical dilemma is fundamentally rooted in a lack of justice (i.e., her lack of resources).

Similarly, if the potential costs of treating an otherwise avoidable adverse effect of methotrexate is a consideration, justice becomes a central component shaping this ethical dilemma.

This highlights the need to recognize socio­economic determinants of health that may be contributory. Physicians are often poorly trained in, and have little expertise in, addressing these issues. Recognizing and referring to local community resources can help facilitate access to care by patients who are potentially at risk.  If available, social workers, as part of interdisciplinary teams, can use the numerous tools at their disposal to help advance the ethical principle of justice.

Similarly, reducing laboratory testing to only the basic, necessary items may be another way to help resolve this dilemma with an eye toward maintaining justice.

Follow-up

With these in mind, you inquire why Maria believes testing is “a headache” and the basis for her belief that the risks of monitoring are greater than the benefits. She relays three concerns: 1) forgetting to have the tests monthly; 2) discomfort in phlebotomy; and 3) fear that the methotrexate will be taken away if there is a lab abnormality.

Given your meditation on the ethics of DMARD monitoring, you propose a solution to Maria:

1. The clinic nurse will call to remind Maria about her lab monitoring and follow up in a week to ensure that it is completed.
2. You will prescribe a lidocaine cream to reduce discomfort in phlebotomy.
3. Maria and you discuss alternative medications in case the risks of methotrexate outweigh the benefits, with a specific eye on alternatives that require less monitoring.

Maria leaves the clinic satisfied and states she will try her best to complete the lab monitoring. In the coming weeks, you provide close follow-up to execute this plan and to answer any new concerns that may come up. In so doing, both you and Maria defuse the conflict and end up with a better patient-physician relationship.

Bharat Kumar, MD, MME, FACP, FAAAAI, RhMSUS, is the associate program director of the rheumatology fellowship training program at the University of Iowa, Iowa City. Follow him on Twitter @BharatKumarMD.

References

1. Hower EG. Beyond shared decision making. J Clin Ethics. 2020 Winter;31(4):293–302.
2. Beauchamp TL, Childress JF. Principles of Biomedical Ethics. 5th. New York: Oxford University Press; 2001.
3. Riley TR, George MD. Risk for infections with glucocorticoids and DMARDs in patients with rheumatoid arthritis. RMD Open. 2021 Feb;7(1):e001235.
4. Travers H. Primum Non Nocere: Origin of a principle. S D Med. 2018 Feb;71(2):64–65.
5. Caruso Brown AE. The last bastion of paternalism? A reflection on proceduralism, power, and privilege. J Clin Ethics. 2021 Summer;32(2):173–181.
6. Rhodes R. Justice in COVID-19 vaccine prioritisation: Rethinking the approach. J Med Ethics. 2021 Sep;47(9):623–631.

Editor’s note: This article was written for The Rheumatologist on behalf of the ACR Committee on Ethics & Conflict of Interest. If you have a case you’d like to see in Ethics Forum, email us at [email protected].