end of life

 

end of life, ethics, understanding statistics

A neurosurgeon confronts his mortality: lessons in statistics and living while you can

Here’s a new “must read” for people with a grim prognosis, submitted by Twitter friend @Scanman (Vijay Sadasivam), from the Tamil region of India: How Long Have I Got Left?, by Stanford neurosurgeon Paul Kalanithi. Seven years ago that was my situation. This was the week that a biopsy confirmed that the blobs in my lungs were metastasized kidney […]

Read More
e-patient stories, end of life, ethics, key people, others' e-patient stories, patient networks, pts as teachers, social media

e-Patient Lisa Adams

In this guest blog post, member Carly Medosch describes Lisa Adams whom she knows from social media. Lisa Adams was diagnosed with stage 4 breast cancer and documented her journey in social media. In another post below we describe the media firestorm that was caused by two articles that criticized her efforts. A hashtag was […]

Read More
end of life, hc's problem list, key people

Caregivers, please share your stories

Caregivers, please share your stories

The Pew Research Center will release a new report about caregivers in June. As we prepare, I’m looking for stories to share with reporters so they can better understand the context for our data. If you have experience caring for a family member, a friend, or a neighbor, either now or in the past, please consider writing […]

Read More
end of life

Engage with Grace

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 More
end 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 More
e-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 More
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