Society for Participatory Medicine
e-patients.net blog
end of life
end of life, ethics
Patient and family engagement in hospice decisions – if they’ll let you
One of the highlights of 2011 for me was the introduction in May (see our post) of the Engagement Behavior Framework by SPM member (and JoPM founding co-editor) Jesse Gruman. She and her team methodically identified 43 behaviors to be done by an engaged patient or their proxy, in ten categories: Find Safe, Decent Care [...]
Read Moreend of life, found on the net
How Doctors Die
If you’re interested in a responsible approach to one’s own death, you’ll want to read How Doctors Die, on the Zocalo Public Square blog. It’s not a frequent topic of discussion, but doctors die, too. And they don’t die like the rest of us. What’s unusual about them is not how much treatment they get [...]
Read Moree-patient stories, end of life
In memoriam: Monique Doyle Spencer
Cross-posted from my own site. Last night a dear and inspiring friend breathed her last. Monique Doyle Spencer, metastatic breast cancer patient, died at home as she wished. All knew the end was near. A couple of weeks ago she happily attended her daughter’s wedding; she had a good Thanksgiving, our mutual friend Paul Levy says, then [...]
Read Moree-pts resources, end of life, general
This year it’s … Occupy With Grace
As in 2009 and 2010, this year too we donate our top post at Thanksgiving to the Engage With Grace movement, encouraging people to participate in this very important discussion, at the time of year when we’re most likely to be together with families. Because it is, above all, the family who needs to know. [...]
Read Moreend of life, general, key people, news & gossip, others' e-patient stories
Steve Jobs’ Cancer Denial
The 60 minutes interview with Steve Jobs’ biographer is an intriguing piece that gives us a few insights into Steve Jobs and his battle with pancreatic cancer. But the most disturbing part of the interview for me was watching Walter Isaacson, a former editor of TIME Magazine, talk about how Jobs was in complete denial [...]
Read Moreend of life, found on the net, general, JoPM, others' e-patient stories, patient networks, social media
The unexpected power of storytelling
The Journal of Participatory Medicine recently published a new commentary, “A Skydiver Jumps, and an Online Community Exults,” about the unexpected power of storytelling in a lung cancer support group. After sharing an uplifting story with her online group, Patricia Flowers is surprised to learn how it moved and inspired her fellow members. This article [...]
Read Moree-patient stories, end of life, general, patient networks, pts as teachers, understanding statistics
Tami Boehmer: Hope versus statistics
Guest blogger Tami Boehmer shares a recent conversation with e-Patient Dave about the pitfalls of survival statistics and the power of hope. Tami’s blog, “From Incurable to Incredible,” is at www.miraclesurvivors.com. I recently had the honor of speaking with Dave deBronkart, widely known as “e-Patient Dave.” Dave is the leading spokesperson for the e-Patient movement [...]
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TEDMED End Of Life videos are up
Last October we posted about two great TEDMED talks related to death. The videos are now up. The empowered, engaged patient cannot ignore this issue. Patients who’ve faced death will know why these talks on death are about being alive. It’s not a paradox; sit down for a half hour and learn why it matters. Sekou and Steve [...]
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In the End
Three years ago our family was faced with a difficult decision. What is the best care for our mother? We toured all the possible local options, but when it came down to it, there was only one facility* willing to take my mother due to the advanced state of her Alzheimer’s disease. It would not have been my first choice. In fact, it would not have been my second or third choice. I found it to be a completely dreary and depressing place. Picture a Nursing Home from the 50s, not a modern day Elder Care Center.
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