Interview: Mary Matthiesen, Conversations for Life
Mary Matthiesen, founder of Conversations for Life, has 17 years of front-line experience in healthcare, end of life care, and executive leadership. She’s a transpersonal educator, coach, and community facilitator, raising awareness and promoting social change in support of living and dying well. Mary and I recently discussed her focus on end of life care, and its relevance for e-patients.
Jon Lebkowsky: What led to your focus on end of life experience?
Mary Matthiesen: If I had to pinpoint a moment, it was in a hospital hallway, listening to a father tell me with pride about his daughter’s life and how much he loved her as she lay in a bed down the hall. It was her ‘dying wish’ to be an organ donor if possible. She was in her 40’s and had a brain injury that led to “brain death’-(a legal definition of death in the U.S). We were awaiting, together, the outcome of some lab tests to see if she could be an organ donor as her parents knew she’d wanted.
Is ANYONE responsible for the whole patient?
The e-Patients Group has been discussing Shannon Brownlee’s book Overtreated: Why Too Much Medicine is Making Us Sicker and Poorer, which tells how the logic of the U.S. healthcare system works against coordination and effective treatment. “Between 20 and 30 cents on every health care dollar we spend goes towards useless treatments and hospitalizations, towards CT scans we don’t need, towards ineffective surgeries—towards care that not only does nothing to improve our health, but that we wouldn’t want if we understood how dangerous it can be.”
One crucial issue we’ve been discussing is the lack of coordination among healthcare providers and resulting treatments based on fragmented understanding of the patient’s whole profile.
Suffice it to say, the e-Patients Group is not of one mind on this subject, due in large part to the different set of major challenges faced by the doctors and patients among us, both fighting for their breath in this dysfunctional system. Below are some excerpts from our respectful but strong-willed expressions of views.
Medpedia - where are the patients??
Medpedia has gotten a lot of publicity in the past week. Considering that Wikipedia has disavowed* usefulness for patients, Medpedia sounds like a potentially great idea. * See Jon’s correction in Comments. –EPD
But when I saw their home page it literally took my breath away: there are invitations for doctors to join, and organizations to contribute content, but nothing for patients – we can contribute ideas, not content.
Well, I clicked the Contribute Ideas link, and you bet I submitted an idea:
Take control of your images!
Where to get DICOM readers
- links to free viewers for Windows, Mac, and Linux, for the DICOM image format used for scan images
- Background information on DICOM, and the Wikipedia entry
- Links to sample images, so you can experiment with a viewer
Why I’m writing about this: Linux guru Doc Searls wrote a profound piece last month about inability to read his own medical images, which led to inappropriate surgery with severe consequences. This could happen to you. Our Jon Lebkowsky wrote a superb and enlighting post about it, which opened my eyes to a new (for me) dimension of patient empowerment: whose data is it, anyway?
An e-Patient Hero Leaves Us
Most of us know Randy Pausch from his video lecture “Achieving Your Childhood Dreams”, taped at Carnegie Mellon as part of their “Last Lecture” series. His hope and optimism in light of a crushing diagnosis brought millions up short as they examined their lives through the lens of this great man at the end of his short life. What you may not know is that Randy was an e-Patient. He was engaged in his own healthcare to the very end and shared his journey freely with the world.
Surprise! Students Find Inaccurate Health Information Online
A new study in the Journal of Medical Internet Research (JMIR) suggests that inaccurate medical information is easily found and regurgitated by students. But the topic the study chose to study — vaccines — has been under increasing scrutiny and controversy, limiting the generalizability of the results.
Now THAT’s an e-participating patient
From ScienceRoll: “Jan Martens at Medblog.nl … mentioned Maarten Lens-Fitzgerald who should be considered one of the best examples of e-patients in the world. See why…” Hey Jen McCabe Gorman, what is it with the Dutch?
Can Professional Medical Societies Further the Ideals of Participatory Medicine?
Professional medical societies are not quite like the secret society Skull and Bones at Yale University, but they may well look that way to many patients. In most cases, their sole reason for being is to serve their members in a pretty narrowly defined way. The services generally include continuing medical education programs, an annual meeting, promoting research, advocating for public and political awareness of the value of the specialty, resources to support clinical practice, and more mundane perks like access to group insurance (malpractice and otherwise). Define the mission of the society a little less narrowly and it’s not hard to see how that mission can be aligned with that of participatory medicine. We often argue in this blog that full participation of all parties in health care will yield better, more efficient care. Such care will benefit the members of a professional society. Further, patients are taking part in research not just as guinea pigs, but as organizers and directors. This benefits the societies’ research missions. But, are medical societies poised to understand this, and if so, how do we guide them?
Steal these slides
Click images to view full size originals.
Last weekend I stumbled across the “attic” of Tom Ferguson MD, who was the “George Washington of patient empowerment,” as CNN put it this month, citing his work since 1975 to create a world of freedom and power for patients.
(That’s you. Thank him.)
Those familiar with this blog know about the white paper DocTom’s team completed after his death in 2006. But I didn’t know some of his earlier writings are around on www.DocTom.com, a modest web site including a few old slide shows. They’re sans speaker notes, but the good stuff is the images: you can get the drift.
My favorites (above) are #88 and #89 from his 2003 slides. Here’s my narrative:
Statistics, Genetics, and Playing the Lottery
I learned two important lessons in a statistics course I took in college: 1) don’t play the lottery; 2) be skeptical of statistics, especially nice-looking charts and graphs.
Yes, I did grow up to be a major purveyor of statistics, but I think it’s a good thing that my first instinct is to be skeptical of the power of numbers when someone is telling a story.
That’s why I was disappointed to miss a recent presentation entitled, “Consumer Interest in Health & Genomic Information,” by Steve Bodhaine, a Yankelovich researcher, who appeared at an HHS-sponsored conference . (For more on the event, read Jen McCabe Gorman’s summary of a panel that included Esther Dyson, Matthew Holt, Linda Avey, and Rebecca Fisher).
Happily, I ran into Esther the next day as I walked down Connecticut Avenue to work. She dug into her bag and handed me the Yankelovich slides, which include the finding that consumers are “interested but skeptical” about how genetic testing is used.
white paper
e-Patients:
How They Can Help Us Heal Healthcare
