Moe Maraachli, sits by his terminally ill baby, Joseph. The baby is being kept alive in by a breathing tube in a London hospital.Facebook photo
One of Canada's most prestigious medical institutions has made the bold decision to go public with details of a highly emotional tug-of-war over a dying infant in an attempt to defend itself against a slew of threats, condemnations and criticisms playing out in social media.
The case highlights how the emerging influence of viral videos, online campaigns and social networks can quickly damage an organization and force even the most staid institutions to change their communications strategies.
But it is also a warning to other health-care institutions that the new social media landscape may permanently alter the old way of doing business.
"Social media is a major influence on public perception," said Mat Wilcox, a crisis communications consultant. "Perception does become reality."
London Health Sciences Centre decided on the weekend to launch a public information campaign about a dying infant in its care, Joseph Maraachli, after the case went viral. Videos have sprung up online that supporters say contradict the doctors' diagnosis that the baby is in a vegetative state. Petitions and campaigns have started in a bid to save Joseph's life. A website, SaveBabyJoseph.com, is asking for donations to help the family, and a similarly named Facebook page had swelled to nearly 13,300 members by Tuesday afternoon.
Attention to the case by Fox News in the United States and conservative and anti-abortion websites sparked an overwhelming reaction, with some people condemning the hospital and Canada's health-care system for not giving Joseph the care his parents have requested, while others have suggested the hospital is interfering with his treatment or that a death panel has ordered the baby to be killed. The hospital increased security after threats from people in Canada and the United States, and is considering legal action against those who make defamatory comments. Officials declined to describe the threats.
Hospitals usually are tight-lipped about their patients, and the facility's decision to speak about the baby illustrates the challenges of making difficult health-related decisions in the age of social media.
"There was a lot of misinformation that was beginning to circulate in a variety of media, including the social media concepts," said Mary Gillett, director of communications at London Health Sciences Centre.
Baby Joseph, as he has become known, was born on Jan. 22, 2010, to Moe Maraachli and Sana Nader of Windsor, Ont. He has been at London Health Sciences Centre since last October, where doctors diagnosed him with a "severe and progressively deteriorating neurological condition." He is breathing with the assistance of a ventilator and has a feeding tube.
The boy's doctor said Joseph has no hope of recovery and recommended his breathing and feeding tubes be removed.
Joseph's parents agreed in a January hearing before the Consent and Capacity Board, a body that hears cases about consenting or refusing medical treatment, that their son's condition won't improve. However, they want doctors to perform a tracheostomy, which the parents believe will open the baby's airway and allow him to die peacefully. They fear he will suffer a painful death if his breathing tube is simply removed. They would also like to take him home to die.
Karen Choong, a specialist in pediatric intensive care at McMaster Children's Hospital in Hamilton, said that in general, removal of a breathing tube is "allowing a natural course of death to ensue" and that it is not necessarily painful, particularly if the individual is not aware of what is happening. The decision to perform a tracheostomy, in which a hole is cut in the throat, in a palliative-care setting, on the other hand, must be weighed against whether it will do the patient any good.
In response to the publicity that has turned Joseph's case from a private family affair into a viral debate, the hospital put out a news release on Sunday that it said outlined its actions to date and its position on the case to "correct the enormous amount of false and misleading information about [the baby's]condition and ongoing treatment."
Ms. Gillett said the hospital is usually bound by privacy regulations, but officials can speak out and defend themselves now because the Consent and Capacity Board, which regularly posts such cases on its website, had released details of the hearing concerning Joseph. The hospital is still being careful not to reveal details that aren't on the public record.
On Monday, the hospital said in a statement that it has always been willing to pay for Joseph to be transferred to his family's home along with doctors and hospital staff.
Experts say hospital officials likely made the right move by trying to correct public opinion about the case.
"It's very unusual, but I think good on them to be honest," said Udo Schuklenk, a medical ethics expert at Queen's University. "They're very well within their right to do that and in fact, I think it's a good thing because otherwise this hospital would be, in the conservative pro-life propaganda machine, they would be seen as the baby-killing hospital and they're absolutely right to defend their reputation."
Mr. Maraachli declined to comment on Tuesday. A family spokesman, Sam Sansalone, an advocate who questions whether the baby is in a permanent vegetative state and is hoping for a second opinion, said the family is considering the offer to transfer Joseph home.
Carly Weeks