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August 10, 2016

Social media use by patients raises ethical issues

The growing use of online social media to get answers on medical issues raises ethical questions for doctors. It’s a new dimension in the ever expanding digital and online world where people look for information on e.g. their medical condition or try to find about about what symptoms they show might indicate.

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Social media in particular can affect how patients interact with doctors and what type of care they expect. Dr. Chris Feudtner, director of medical ethics at the Children’s Hospital of Philadelphia, together with some colleagues wrote about this development 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 elaborates in an e-mail reponse on Fox news questions. "Doing this takes time and effort, yet trust is built with time and effort."

Feudtner and his colleagues wrote about possible ethical issues by using a fictional case, blending elements of several recent real-life situations in order to explore the ethical challenges posed by patients’ virtual lives. 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. After a relapse the boys’ parents parents launched an online petition in order to get access to an experimental cancer treatment that was only available through clinical trials. No trials were accepting new patients. The petition drew 60,000 supporters in 48 hours, with news crews descending on the hospital.

Broader ethical issues

This situation raises broader ethical issues about how treatment decisions should be made. One such issue is the fact that not everybody has the same access to social media or skill at using online communities to advocate for the care they want to receive, the article argues.

It is suggested in the article  that hospitals and other healthcare institutions 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 media.

According to Robert Macauley, medical director of clinical ethics at the University of Vermont Medical Center, the ficctional case is also a reminder that doctors need to work with patients to keep the lines of communication open. "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."
 
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, so they can help dispel misperceptions and ensure that both physician and patient are starting with the same set of facts.

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