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 More
end 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 More
e-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 More
e-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 More
end of life, general, how I became an e-patient, key people, news & gossip

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 More
end of life, found on the net, general, how I became an e-patient, JoPM, 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 More
e-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
end of life

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 […]

Read More
end of life, general

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.

Read More