End of life blogging benefits and the questions it raises

With Eva and Alicia, both women were very young, 25 and 28, respectively. And for anyone who knows the history of American bioethics will realize young women, severe illness and dying seem to bring about a intense focus of cultural awareness (see Schiavo, Cruzan, Quinlan).

It struck me how the open sharing of the decline of their health towards death may signal a cultural revolution about how our society looks at death and dying. Where death and dying has been somewhat hidden from public view in the ICU and nursing home, Judy, Eva and Alicia brought us closer to them during their last days.

By blogging they were able to grow a large audience who became more involved in their story, their life. Much like Randy Pausch and his famous YouTube ‘Last Lecture’ and follow-up book, they have become very influential. Some of the comment counts on their blogs number in the hundreds. Multiply that by a fudge factor of 50-100 for all the lurkers who don’t comment and you start to realize how many people have read a part of the story.

I believe this younger generation who has a more open access approach towards their social life may be a strong force in changing the narratives of medicine, disease, health and dying. They may not reach everyone with their story, but because they are heavily networked you only need to a 100-200 widely read blogs to start seeing a big impact. While the effect starts local, it soon spreads regionally and eventually globally because of the international reach of the internet. And when taken together they may have a wider reach than books like the upcoming Passages in Caregiving or Two Weeks of Life: A Memoir of Love, Death and Politics.

Back in January Pallimed posted a story about the death of Judy Chamberlin, the blogger/activist who wrote about a blog all about her 13 months on hospice. This week two more people died who lived their illness and lives very publicly through blogging and social media. With the profound temporal proximity of the deaths of bloggers Eva Markvoor (Blog: 65 Red Roses) and Alicia Parlette (Blog: Alicia’s Story). CNN published a great article talking about Eva and also mentioned a two other bloggers who died: Miles Levin and Michelle Lynn Mayer.

Some interesting features of social media for patients:

EASY TO DO: Relatively low impact so when you feel sick you can still send out a tweet or record a video.
ACCESSIBLE: Can be done from mobile platforms or with increasingly accessible internet in hospitals (unless your hospital is so short-sighted as to block sites like Facebook from public wi-fi cutting off patients from their social networks. Palliative care people should advocate for any social media site blocking to end as holistic patients care)
FEEDBACK: when you are sick online communities usually rally with words of support and love, just what someone who is sick may be looking for.
WIDE REACH: when the network starts to work for you the spread of your story can be viral

Reading these stories raise many questions for me as a doctor and social media advocate:

Do you know if your patients or families are blogging?
If so, did they tell you or did you find it?
What are they writing about hospice and palliative care issues?
What if a patient wanted to interview for their blog?
Should we encourage or share stories of our patients using social media so that others may see the risks and benefits?
How should we as professionals learn from these open looks into a patient’s life?
Will I blog when I am dying? (I think I will, but who knows how I will feel?)

Christian Sinclair is a palliative care physician who blogs at Pallimed.

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