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Jeanne Dennis

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Destigmatizing Death and Dying Through Social Media

Posted: 07/22/10 03:00 PM ET

On Death and Dying, Blogging and Reality TV

Forty years ago, Elisabeth Kubler Ross railed against the indignity and inhumanity of cancer patients being shunted to the back wards of the hospital to die alone. "We isolate both the dying and the old, and it serves a purpose," she testified to Congress in 1972. "They are reminders of our mortality."

More than 8.5 million people tuned in to the Discovery Channel's "Deadliest Catch" as Captain Phil Harris, a fan favorite on the crab-fishing reality show, died of stroke-related complications, and as his family's struggle turned from caretaking to mourning. Over the past year, more than one million people followed the passionate life and the death of Eva Markvoort, the daughter, sister, friend and aspiring actress who chronicled her struggle with cystic fibrosis on her vivid blog, 65 Red Roses. And every day, thousands upon thousands tune in to smaller, more intimate blogs and online journals on Facebook, personal websites, and sites such as CarePages and CaringBridge, to follow and share support for the life, struggles and death of loved ones, friends and coworkers.

How far we've come from the days of Dr. Kubler Ross. Says my colleague the Rev. Paul Metzler, D.Min., Director of Community and Program Services for Visiting Nurse Service of New York Hospice Care: "People who are dying have moved from the back wards of the hospital to my living room."

Death and dying are part of life, and I welcome that they are also part of the 21st century chronicles of life, reality television and the Internet--mediums that have the power to inform, connect and entertain. To some, "entertain" may seem an off-putting notion in the arena of death and dying, and I know it can raise the red flag of exploitation in certain situations. But I'm not talking about entertainment as simply diversion. Entertainment, when done well, can shed light on our own lives and give us greater access to the full range of human experience and emotion. When entertainment is effective, what we witness can become part of us forever, and it becomes a deeper part than if those experiences were isolated in the far corners of the hospital, as Dr. Kubler Ross suggests.

Opening the Channels of Communication
Social networking venues and sites like CarePages, which VNSNY Hospice provides for its patients allowing them to connect to family and friends, and CaringBridge, which reports 36 million visitors over the past year, can go a long way towards building community and alleviating isolation for those with a terminal illness and their inner circle of family and friends. The Internet is tailor-made for opening the channels of communication, in this case between someone living through a terminal illness and those who want to help in the most immediate and supportive way they can, even if they live far away.

Following a life-limiting diagnosis, more and more patients and their families turn to some kind of online communication to update loved ones on details of a diagnosis, symptoms, and daily ups and downs. This both informs and creates a sense of community. Logistics such as a good time to visit or even a request to refrain from visiting can be easily shared. If it's been a tough few days and words of encouragement are much needed, a post on Care Pages, a CaringBridge online journal or a Facebook page can bring an instant onrush of well wishes from far-flung friends. Online communication can also be vital during bereavement, especially--and perhaps necessarily--when it allows people to carry the conversation from the virtual world into the corporeal one. Web memorials, which keep memories of a loved one alive after death through words, photos and video, also provide a sense of community for those struggling with loss.

Life Review
A term we use often in hospice is "life review," and it refers to the process of weaving together reminiscences that can help patients and their loved ones facing life-limiting illness shape a personal sense and meaning of their lives. Coined by Dr. Robert Butler, the renowned expert on aging who died this month at age 83, life review is a therapeutic process that can provide comfort and a sense of closure for both the dying and the bereaved. Visiting Nurse Service of New York has a guidebook titled Lifetime Review that helps hospice volunteers learn how to guide patients through this important end-of-life process.

Today, blogs, online journals and, in the case of "Deadliest Catch," even reality television, have become immediate and natural venues for life review for many people. Telling one's life story is an essential part of the human connection that is so vital for both living and dying. That we have new mediums through which to do this--mediums that can reach hundreds, thousands, millions of listeners and learners--is largely a good thing, as long as the new media augments, rather than replaces, the traditional in-person, face-to-face life review process.

Death as Part of Life
Another tenet central to hospice is that death is an integral part of life, rather than the disconnected, isolated affair that Dr. Kubler Ross saw again and again in the 1960s. The raison d'être of blogs and online journals, and even reality television, is to capture and compel readers through day-to-day experience. What people like Eva Markvoort and Phil Harris are living through, day to day, is their illness and ultimately their death. We witness as their families and friends live the caretaking, grief and mourning that accompanies the death of a loved one.

VNSNY Hospice volunteer Abby Spilka, in her recent A Day in the Life blog entry about the season finale of "Deadliest Catch," wisely concludes, "I think if it helps even one member of one family feel less alone while sitting in a hospital waiting room hoping for answers, it is a line that is well drawn, not crossed."

In "Unexpected Treasure of a Day," a blog posted a few months before her death, Eva captures, with haunting immediacy, the quotidian details that comprise living--and dying. She details, "Boxes of wine/a trunk full of costumes/...sushi adventures/conversations about everything." And, with equal clarity and passion: "Fits/bursts/attempting to breathe/holding it in only makes it worse." These words are evocative reminders of our mortality, and they resonate loud and clear.