While browsing the health section on CNN’s website yesterday, I came across an article about a 25-year-old woman who recently passed away from cystic fibrosis. What made her story especially unique, though, was that up until the very end of her life, she blogged about her experience.
The article reports that the woman, Eva Markvoort, started her blog in 2006 when cystic fibrosis patients were quarantined due to infection. For the years to follow, she chronicled her life with the disease, from violent coughing fits, to fun times with family, to eventually coming to terms with the idea that her life was ending.
According to medical experts cited in the article, the idea of using some sort of outlet such as blogging is a way of coming to terms with the fact that the end is near and a way to share one’s last thoughts. However, it also destigmatizes death for others. It’s a reflection, the experts say, of a shift in society to not being so closed off to death.
In the article, Eva’s mother reveals that when her daughter first began her blog, she felt uncomfortable with her openness. I can imagine watching your daughter in pain from an incurable disease is unbearable, and watching her share it with the world may not help.
However, as I read this, the idea that people who are suffering from life-threatening illnesses blog about it made sense. It can be cathartic to have an outlet in which to share your thoughts. It can create a community for a patient stuck in the hospital, a way to keep connected with family and friends. It can serve as a connection to other individuals suffering from the same illness. It can be a way for a patient to feel as if they are not all alone in this.
In fact, blogging is just one method of social media that has made its way to the medical field. Tweets from the OR to keep patients’ families informed during an operation, Facebook pages, personal surgeon blogs—these are ways to communicate to the world from within the hospital and form a sense of community and openness between doctors, patients and families.
Perhaps it makes it easier for patients and their families to talk about serious topics such as illness and death. And, these communication methods also provide doctors and healthcare professionals a way to discuss their experiences dealing with these issues. Just because a surgeon is a professional does not mean having a patient lose a battle with an illness does not have an effect.
In the end, I don’t think death will ever be a comfortable thing to talk about for patients and their families, or for doctors. And, the idea that someone is willing to share their experiences right up until the end is controversial. Still, I think stories like Eva’s might point to where the medical field is headed. New platforms for communication are making the hospital a more open environment for providing an outlet for doctors, patients and their families to share their experiences in all stages of care, and in life.
What are your thoughts? Have you had a patient blog about their experience in the hospital? How has social media affected communication between doctors, patients and their families? E-mail me at firstname.lastname@example.org