Going public with disease: How much is too much?

I’m rooting for Robin Roberts. As if breast cancer in her 40s wasn’t enough, the warm, sparkly co-anchor of Good Morning America is now dealing with myelodysplastic syndrome, a rare bone marrow disorder that may have been caused by the chemotherapy she underwent five years ago.

Robin, 51, underwent a bone marrow transplant last week and her colleagues from ABC were there on the spot, cameras and all, capturing the moment. Described in news accounts as “visibly spent”, she nevertheless recorded a message from her hospital bed, telling viewers she could “feel the love” from her legions of fans.

She has been open about her medical situation and exceedingly gracious about sharing this challenging journey with the public. No one could possibly wish her anything but the best.

But there’s a troubling side to this story: When does going public with a disease become too much?

ABC has begun taking heat from critics who think the network has gone overboard. Some have leveled accusations that the story is being exploited to gain better ratings.¬†”It’s a fine line between educating the audience and bringing them up to date, and crossing over and turning that into a ratings booster or an audience grabber,” Arthur Caplan, director of medical ethics at the New York University Langone Medical Center, told the Associated Press.

(You be the judge; the video is here.)

ABC has denied¬†engaging in hype, saying viewers care about Robin and genuinely want to know how she’s doing. There’s value in the emotional support she’s receiving from her many fans.

Nevertheless it ought to make us feel a little uneasy, and not only because of the ethical issues it raises about newsroom decision-making.

At what point does our collective love of a feel-good story trump what’s best for the subject of that story?

It’s not hard for me to put myself in Robin’s place. Regular readers of this blog know I had non-Hodgkin’s lymphoma when I was in my 30s. I’ve done chemotherapy, I’ve done radiation, I’ve done time in an inpatient oncology unit. I know the physical and emotional toll exacted by cancer treatment. I’m all too aware of the potential for serious long-term and late complications such as the myelodysplastic syndrome Robin is being treated for, and the limited options for reducing the risk of late treatment-related toxicity – an angle of Robin’s story that most people unfortunately don’t seem to have picked up on.

So it was rather disconcerting to see Diane Sawyer, Sam Champion and presumably at least one television camera operator crowd into the hospital room with Robin and her family while new bone marrow cells were infused into her. Sure, Robin is a colleague and has many friends at ABC who wish her well. Sure, everyone was appropriately gloved and masked and (I hope) mindful of the infection risk.

But first and foremost this is a patient. Moreover, this is a patient with virtually no immune system, someone who’s highly vulnerable and undergoing a very challenging medical procedure. Even a seemingly minor infection can be a serious threat. Is it truly in her best interest to expose her to the extra risk for the sake of a heart-warming TV moment?

One can only hope it didn’t inadvertently send a message that the immune suppression that accompanies bone marrow transplants, not to mention many standard chemotherapy regimens, is not a big deal. People whose immune system is compromised depend on the community around them to exercise good judgment and avoid the unnecessary spread of germs.

Finally, there’s the emotional aspect to consider. ABC has said that everything being broadcast is with Robin’s permission, and I believe them. Even when there’s consent, though, media coverage of these kinds of stories can exert subtle pressure on the subjects to go along with it. Sometimes the story takes on a life of its own and it becomes difficult to tell the cameras and reporters, “Not now”, especially when someone is sick and perhaps not able to think clearly or be assertive. Sometimes the story stops being about the patient and becomes more about tugging at heartstrings or manipulating the emotions of the audience.

“At a certain point, Robin needs to heal,” Shelley Ross, former executive producer of Good Morning America, told the Associated Press.

Exactly. Although it’s generous for sick people to share their experience with the public, they don’t owe it to us. Rather, we have a responsibility to protect them at a vulnerable time. What’s in their best interest, physically and emotionally, ought to come first always.

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