Society for Participatory Medicine
e-patients.net blog
end of life
end of life
Engage with Grace
A guest post from the Engage with Grace team… One of our favorite things we ever heard Steve Jobs say is… ‘If you live each day as if it was your last, someday you’ll most certainly be right.’ We love it for three reasons: It reminds all of us that living with intention is one [...]
Read Moreend of life, trends & principles
Caregivers Online
A new Pew Internet/California HealthCare Foundation report is out today: Family Caregivers Online. I thought I’d give some background on why we did the study and a few key take-aways. Caregivers are alpha geeks of health care 30% of U.S. adults are currently caring for a loved one and it cuts across most demographic groups. [...]
Read Moree-patient stories, end of life, others' e-patient stories, pts as teachers
HIT Journalist becomes patient advocate after seeing the danger of uncoordinated care and poorly designed workflows
Neil Versel, a HIT journalist, relates a very touching story of his father’s care at two different hospitals: one was uncoordinated and prone to errors and near misses, another one was quite a good experience. Unfortunately Neil’s father had a rare poorly known disease (MSA) and he died from it. The whole story with details is here: http://www.meaningfulhitnews.com/2012/05/17/mark-versel-1944-2012/ [...]
Read Moreend 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 [...]
Read More
