end of life


end of life, general, Patient Conference Participation, positive patterns

Apply by 1/23: PCORI grant to fund e-patients at palliative care summit!

Intro note by e-Patient Dave: What a great development!  CCCC is an organizational member of our Society, and last year we blogged CCCC conference announces inaugural class of palliative care e-patients, and now, even better news: e-patient participation is getting formal support through a PCORI grant! I spoke at last year’s event, and as I said in my […]

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end of life, Patient Conference Participation, positive patterns

CCCC conference announces inaugural class of palliative care e-patients

Guest post by SPM member Liz Salmi of CCCC, an organizational member and supporter of our Society for Participatory Medicine. Note also (at bottom) that this event provides a model for other organizations to follow: patient participation is enabled by a foundation grant. In our society, talking about serious illness and death and dying is often difficult. Having these […]

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e-patient stories, end of life, found on the net, medical records, pt/doc co-care, pts as teachers

Forbes article featuring Carol Gunn: One Doctor’s Quest To End The Plague Of Screwed-Up Medical Diagnoses

Carol Gunn, an SPM physician member, was featured in a Forbes article about her sister’s misdiagnosis, and her mission after her sister’s death. Carol’s tips for patients to avoid being victims of diagnostic mistakes: Tip #1: Get a second opinion that’s completely independent. Although this may seem obvious, many patients make the mistake of seeking out second […]

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end of life, general

The Medical Humanity of Oliver Sacks: In His Own Words

We science-medicine-poetry junkies, along with a sizeable portion of the world’s population, are mourning the death of Oliver Sacks, the neurologist and author who died last Sunday from metastasized melanoma. And as enthusiasts of Dr. Sacks’ catechisms on the soul of the patient, we turn to his own words of mourning, written over 40 years […]

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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 […]

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e-patient stories, end of life, ethics, how I became an e-patient, key people, 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 […]

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

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 […]

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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 […]

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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. […]

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e-patient stories, end of life, how I became an e-patient, 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/ […]

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