Ethical Concerns in Rheumatology Require Nuance

ACR’s Code of Ethics May Be Helpful

Editor’s note:ACR on Air, the official podcast of the ACR, dives into topics important to the rheumatology community, such as the latest research, solutions for practice management issues, legislative policies, patient care and more. Twice a month, host Jonathan Hausmann, MD, a pediatric and adult rheumatologist in Boston, interviews healthcare professionals and clinicians on the rheumatology front lines. In a series for The Rheumatologist, we provide highlights from these relevant conversations. Listen to the podcast online at acronair.org, or download and subscribe to ACR on Air wherever you get your podcasts. Here we highlight episode 84, “How Should We Navigate Moral Dilemmas in Rheumatology?” which aired on Aug. 27, 2024.

The ACR on Air podcast on ethics in rheumatology touched on a whole range of issues, including patient decision making, physician conflict of interest, treatment access and more, with Kelly Weselman, MD, a rheumatologist with Arthritis and Rheumatology of Georgia in Smyrna and chair of the ACR’s Committee on Ethics and Conflict of Interest.

During the podcast discussion, Dr. Weselman reviewed with Dr. Hausmann some of the most common ethical questions that arise in the specialty and the considerations in each situation.

Dr. Weselman

Filtering Information for Patients

Here’s a common scenario: A patient sees a commercial for a rheumatology medication or talks to a friend who uses it. That patient does a little more research and concludes that is the medication they want to use for their condition. Yet the rheumatologist may not think that treatment is the best next step for the patient. What should a rheumatologist do?

Balancing a patient’s autonomy for healthcare decisions and their access to so much information on the internet along with the physician’s interpretation of that information may not be thought of as an ethical dilemma, but it actually is, Dr. Weselman explained.

“It’s [about] trying to reconcile that and give the patient time and help them interpret the information they have accessed so that they may have a better understanding of our recommendation that may differ from theirs,” she said.

Although a patient’s autonomy in making decisions about their healthcare is important, the role of informed consent is also crucial.

“I think the physician’s role is really important in spending time educating the patient beyond what they may have read or heard from others,” Dr. Weselman said.

Also, this area can raise more questions when a rheumatologist is rushed for time. Who should get more time for education? Should everyone get an equal amount of time? What about patients who need help from family members to absorb information or older patients who have more trouble understanding certain concepts? Easy answers to these questions don’t always exist.

Treatment Access

Access to treatment is another ethical concern, particularly with the costly medications within rheumatology.

“It may be that the cost will be incurred by the patient, or a patient’s lack of insurance or lack of access, and it may be a third party weighing in on the best next step and having to advocate for a patient while considering the third party’s interest and considering the cost to the patient, insurer and the health system as a whole,” Dr. Weselman said.

A guiding principle for rheumatologists in this situation is to think about the patient’s preferences and how to help them achieve a reasonable quality of life—and then advocating for a treatment to help them reach that best possible quality of life.

“Sometimes that [approach] means that going with a formulary will work and maybe we can work with that. Sometimes it means that we really need to get involved, and we need to contact the insurance company and write a letter or speak to a medical director,” she said. It also may mean helping the patient find financial assistance programs.

“It’s also making sure that if we think a treatment is best that we really are choosing it because it’s best for the patient and not best for us in any other way based on our relationships with companies,” Dr. Weselman said.

Dr. Hausmann pointed out the conflict that may arise between a physician believing a certain drug will maximally help a patient and an insurer that may put up barriers against it. Insurance companies may have their sights set on what’s best for the population vs. the individual sitting in front of the physician.

“I don’t think it necessarily means that everybody else is unethical, but I do think that having a third party involved in the physician–patient relationship does present unique ethical challenges,” Dr. Weselman said.

Conflicts of Interests

Another common ethical area within rheumatology and medicine in general is managing conflicts of interest between physicians and pharmaceutical companies. Dr. Hausmann pondered whether rheumatologists should have those types of relationships with the companies.

“I don’t think it’s practical to think that we shouldn’t [have those relationships] because we are doing a service to patients as we develop new therapies,” Dr. Weselman said. “We as physicians need to remember though that our primary goal and allegiance is to the patient sitting in front of us, and the relationship between the patient and physician has to be at the forefront to do our job the way we need to in order to maintain trust with the patient.”

That may mean not accepting gifts from a company or having any pharma company-based relationships front and center when enrolling patients in clinical trials.

“I think it’s really on us to be aware that these biases occur and not to deny that [they] can be there,” she said.

This area can become challenging when the ACR develops guidelines on medications to use for certain conditions, realizing that experts in the field are needed for guideline development, but also recognizing that they cannot have a team of people conflicted with developing those guidelines.

“The way it stands right now is the [principal investigator] of the guideline or the guideline project must be free of conflicts related to that topic or related to any company that would have a positive or negative stake in the topic. After that, we must have a majority or 51% of the participants must be unconflicted,” she said.

“For the most part, I think we’ve been able to make it work, and we’ve come up with guidelines that are fair. Full disclosure is important for anyone who’s participating in any kind of guideline project. We take disclosure very seriously. But it’s an ongoing issue that we are constantly juggling,” Dr. Weselman said.

Help for Ethical Dilemmas

Dr. Hausmann asked where rheumatologists should turn to if an ethical dilemma arises.

“I can’t tell you how many times I wish there was an ethics policeman I could just call up to tell me the right answer,” Dr. Weselman said.

Short of that, some resources are available.

A literature review on PubMed may provide help. “I’ve been pleasantly surprised at how many articles I can find relating to the principles of ethics and same clinical situations and the best way to make those decisions,” she said.

Some organizations, particularly hospitals that handle end-of-life care, will have a department of ethics.

The ACR has a Code of Ethics, and the Ethics Committee has issues that it will consider. Although it’s not a legal body, it can still help with ethical questions.

Dr. Weselman reflected briefly on ethical issues that arise more often now vs. 10 years ago, including the cost of new therapies, the availability of information on the internet and issues around social media and confidentiality.

Looking forward, she sees artificial intelligence as something that could raise ethical questions as it relates to medicine. “I think that over the next decade, we’re going to have some new issues to grapple with,” she said.

Vanessa Caceres is a medical writer in Bradenton, Fla.