Patients on social media cause ethics headache for doctors

“The internet and ready access to vast amounts of information are now permanent aspects of how we live our lives, including how we think about and deal with our health problems,” Dr. Chris Feudtner, director of medical ethics at the Children’s Hospital of Philadelphia, said by email.

Social media in particular can affect how patients interact with doctors and what type of care they expect, Feudtner and colleagues write in an article about ethics in the journal Pediatrics.

“Clinicians should ask about what patients and families have read on the Internet, and then work through that information thoughtfully, as sometimes Internet information is not helpful and sometimes it is helpful,” Feudtner said. “Doing this takes time and effort, yet trust is built with time and effort.”

To explore the ethical challenges posed by patients’ virtual lives, Feudtner and examined a fictional case blending elements of several recent real-life situations.

In this hypothetical case, the parents of a 10-year-old boy hospitalized with cancer started a blog. Doctors, nurses and other hospital staff were among the 1,000 subscribers to his blog.

A year after his hospital stay ended, the boy relapsed, and his parents launched an online petition seeking access to an experimental cancer treatment that was only available through clinical trials. No trials were accepting new patients.

The petition draws 60,000 supporters in just 48 hours, and news crews descend on the hospital.

Aside from the obvious pressure this puts on one team of clinicians at one hospital to help one very sick child, this situation raises broader ethical issues about how treatment decisions should be made.

Fairness issues arise because not all families have the same access to social media or skill at using online communities to advocate for the care they want to receive, doctors argue in the article.

Hospitals and other healthcare institutions need to have policies in place to handle situations when patients’ social media posts go viral and take steps to respond proactively. Clinicians need to know they will be supported for providing appropriate care even when this clashes with what patients and families advocate for on social medial.

The case also serves as a reminder that doctors need to work with patients to keep the lines of communication open, said Dr. Robert Macauley, medical director of clinical ethics at the University of Vermont Medical Center.

“More and more often, patients are not only exploring potential treatment options on the Internet, but using web-based resources for determining diagnosis and prognosis,” Macauley, who wasn’t involved in the ethics article, said by email.

Especially when doctors know there’s a lot of inaccurate information online, they should be pro-active about asking patients and families what they’ve learned from the web, Macauley said.

“Open-ended questions designed to identify alternate (and potentially misleading) information that the patient has received—whether through the internet, social media, old-fashioned reading, or conversation with others—will help dispel misperceptions and ensure that both physician and patient are starting with the same set of facts,” Macauley added.