By Sue Wintz, BCC
Like many others, I was fascinated last week by reading the live tweets by NPR’s Scott Simon as he sat by his mother’s hospital bed in Chicago. As he shared the two-week experience of his mother’s decline ¬– their interactions, his thoughts and feelings, and ultimately her death – all in 140 character snippets, he provided a glimpse into his very personal grief process in a very public way.
An article in Forbes, “Death in the Age of Social Media,” asked whether persons should utilize social media outlets such as Twitter and Facebook to express their grief and memorialize their loved ones. The author, Natalie Robehmed, described how many families keep their loved one’s Facebook accounts active as a way to continue to remember and engage the person who has died, not only by re-reading their posts and viewing photos, but keeping it as a place where others can share remembrances, remember anniversaries, and post some simple lines such as “I’m thinking of you” to offer ongoing support.
An even more powerful pair of articles was published in the international edition of
e-hospice: Palliative care news, views, and inspiration from around the world. In a two-part series writer Rosie Brown examines “Starting the Conversation on Social Media.” Part 1 tells the story of Kate Granger. She writes a blog, drkategranger, which she describes as “a doctor & terminally ill cancer patient musing about life & death.” Recently Dr. Granger also took to her Twitter account to announce her “cancerversary” as she reached the two-year mark following diagnosis, tweeting: “It’s my 2-year cancerversary today.”
e-hospice looks at the phenomenon of increased use of social media in a bit of a different way than the
Forbes article. The emphasis is on the way in which posts such as Scott Simon, Kate Granger, and others have brought the conversation about end-of-life issues out into the open, providing new ways of encouraging persons to consider and start the conversation with themselves and their loved ones. Rose Brown writes:
“The ability to share the experience of either the end of one’s own life, or as the witness of the death of another, has the potential to profoundly shift the way that the rest of society conceptualizes death and dying. We are suddenly exposed to stark, honest accounts of parts of life that up until recently have been shrouded in myth and misconception.”
Part 2 of the e-hospice article opens with a description of the evocative work of photographer Kim Ryder who has developed a professional end-of-life and after death photographic service. After her mother died in 2008, Kim realized the importance of remembering loved ones in the last moments of their lives, so when her aunt became terminally ill she embarked on photographing images of her during and after the dying process. Her images can be found on a blog entry on the The GroundSwell Project.
One question that the e-hospice author was wondering when she wrote the article was whether the social media outlets were useful, that is, are they being accessed by persons already grieving and those with a keen interest in end-of-life issues, or are they a new way to open the conversation for those who had not considered the impact of illness, death and dying? So they turned to experts to ask the question.
Now the disclaimer: the experts they came to were HealthCare Chaplaincy staff. In Part 2 you’ll read quotes from Jim Siegel, George Handzo and myself.
I realize that this column has several links for you to follow to grasp the story, but I believe it is essential for us as chaplains to read them and think about the questions being raised. Social media is changing how we interact with others in numerous ways, and these articles point out that it is impacting not only how those facing end-of-life issues are sharing their experiences, but how those reading them may be led to begin thinking about the impact on their own lives.
As usual, the question is what does this mean in terms of application for chaplaincy practice?
- First, if you are not involved in social media, particularly Twitter, LinkedIn, and in following palliative care and other blogs that address medical issues in your chaplaincy setting, start doing so. Previous articles in PlainViews have provided a list of blogs to follow. Learn how to use Twitter and its hashtags (for example #hpm for hospice and palliative medicine).
- In your assessment conversations with patients and families, when you ask about where they find their sense of community, don’t forget about social media. While chaplains typically ask about family, friends, and a religious community, we often forget to ask about other sources of support – even when the person in front of us is sitting with a computer open or nearby.
- When reading the posts and blogs mentioned above, I wondered where spiritual support came in. Scott Simon referred to a priest friend coming by to provide ritual for his mother, yet later on his posts appeared to express a sense of spiritual distress. How could that be addressed in an appropriate way, and should it? Many of his followers offered words of support and sympathy. Where were the chaplain words?
- How can spiritual issues and the contributions of professional chaplaincy care be highlighted in blog posts and articles that talk about end-of-life issues?
I’d be interested in hearing your thoughts once you’ve had a chance to read and reflect on the articles. Social media is changing the way illness and end-of-life conversations are being done. Will chaplaincy be a part of that?
Sue Wintz is managing editor of PlainViews. This content is made available by HealthCare Chaplaincy, the publisher of PlainViews®, the online professional journal for chaplains and other spiritual care providers. Information about PlainViews, including subscriptions, can be found at plainviews.healthcarechaplaincy.org. Information about HealthCare Chaplaincy, an international leader in the research, education, and practice of spiritual care and palliative care, can be found at www.healthcarechaplaincy.org.
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