COMMENTARY

Is It Ethical to Tweet From Someone's Deathbed?

Arthur L. Caplan, PhD

Disclosures

October 01, 2013

Hi. I am Art Caplan, from the Division of Medical Ethics at the NYU Langone Medical Center in New York City.

Think about this: How much would you want people to know about a patient of yours who is dying? How hard should you struggle to protect that patient's privacy if a family member comes in and says, "I want to tweet about this," or a sister shows up and says, "I'd like to video some of this"? Is that appropriate behavior? Is it something that we should be attentive to and try to encourage or discourage?

A well-known radio personality recently chose to tweet about the death of his mother. He was really doing it almost minute by minute as she died. I had a chance to ask whether his mother had given permission for this to be done. This man felt that she understood what was going on and that she was fine with it, but there had not been an explicit discussion to ask, "Mom, if I tweet about this, are you okay with it? Do you understand that a lot of people are going to see these tweets?"

One lesson I took from this is that tweeting about these very intimate and personal events can be comforting and they can be educational, but we have to put the patient's dignity first. If someone wants to send out information about a patient who is in dire circumstances, I think we better be sure that the patient understands what is going on and has explicitly consented to it.

Privacy in the Era of Social Media

We may wonder, is nothing private anymore? Do we have any intimate or personal moments? In the era of social media, Twitter, Facebook, and all the rest, there is not much privacy left. Families may decide that it is comforting to talk about this or they may decide that relatives who cannot be there can be part of the process of support and comfort for a dying loved one by using social media. I can imagine circumstances and situations when it may make sense for a particular family. It is certainly not for everyone, but it may make sense for some.

The crucial thing to keep in mind is to discuss this before the situation arises. This may be something to bring up with your patients now.

We talk about living wills, but few of us have ever asked a patient, "Are you alright if someone tweets about you? Are you alright if someone videotapes this? Do you want more privacy than maybe your son-in-law or immediate family might want to give you?" If we are willing to get into this discussion, patients can make their wishes known before we get to the end of life. And at the end of life, I think we need to ask patients to consent again, if possible, just to make sure that they are still fine with how their personal space and the most intimate of moments is being handled, whether or not it is good for the family or whether third parties agree. It is the individual's right to decide whether they want others to know about what is happening to them.

I am Art Caplan from NYU. Thanks for watching.

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