e-Patient Dave

May 12, 2016 By e-Patient Dave 6 Comments

“I’m gonna live live live until I die”: new speech about palliative care at #cccc16

I spoke Thursday to a completely new kind of audience: the Coalition for Compassionate Care of California, which is involved in palliative care.

Palliative care is not a synonym for hospice or end of life. It’s about making life with a disease more comfortable, which can be combined with curative care – it does not mean you’ve abandoned hope of a cure. But many doctors, nurses and insurance companies don’t know this yet. Be informed, and speak up!

Although it was a new topic, the talk was a tremendous success. Here’s the video, which was captured (at no cost!) by @KSAust (Kris Austin) on Twitter using Periscope. (Email subscribers, if you can’t see the video, click the headline to come online.)

It’s about changing our cultural conversation

I compose every talk for the individual audience. There’s often a lot of overlap with previous talks, but this one was very different: I’ve never talked about this subject. It ended with an enthusiastic standing ovation, which always means the message got through.

Thanks to my barbershop singing hobby, especially my chorus, the Nashua Granite Statesmen, from whom I first heard this arrangement of the song that was the title of this talk: “I’m gonna live until I die.” At the start I pointed out that Frank Sinatra introduced this song the year I was born (1950), and at the end I said that we pass our culture down to the next generation: the talk ended with a performance of the song by one of the Harmony Explosion summer choruses, where we barbershoppers pass the tradition along to the next generation.

Seriously, spread the word, because hardly anyone knows: Palliative treatment can be combined with curative ones. It’s not a synonym for hospice, and does not mean giving up hope – it means making it easier to cope with the effects of a disease or its treatment.

May 10, 2016 By e-Patient Dave 5 Comments

Vice President Biden’s potent speech about the importance of data in cancer

I’m at the 7th annual Health Datapalooza event in Washington. What I have to say here about this conference is subjective, my gut feel, because I haven’t been at most of the previous ones, because they were largely about the business side of health data – there hasn’t been nearly enough focus on the people who actually have the problem: the patient and family.

This year’s different. It’s managed by a different organization (Academy Health), and a lot of strong patient voices are involved, on stage and behind the scenes. There’s a whole Consumer Track, in addition to all the business things going on. And yesterday we saw a speech by somebody who most definitely fits the category “the people who have the problem.”

Vice President Joe Biden’s son Beau died a year ago this month of glioblastoma, a nasty nasty brain cancer. For his talk I left the main room and went to a side viewing room so I could record it on my iPad.

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May 5, 2016 By e-Patient Dave 5 Comments

An examined life in an unfolding movement

Yesterday I wrote about a mistake I made last year at Medicine X, behaving unfairly to a volunteer while over-tired. At the end I said “I believe in introspection – ‘the examined life,’ as they say – and continuous self-improvement,” and that I’d be saying more about what I’ve learned.

In potentially troubling times, what makes a difference is what you’re committed to, because that’s where your compass points even when things get bumpy. My goal in this essay is to close out the episode having learned something. Here’s what I see.

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May 4, 2016 By e-Patient Dave 18 Comments

e-Patient request – time sensitive: reactions to Taxol, Abraxane, Carboplatin

This uterine cancer e-patient had a very bad reaction to a new chemo regimen yesterday and has lost confidence, and wants to learn more before proceeding. What advice do you have on these treatments? Are there good online e-patient communities?

The emails I received:

I went to the Infusion Room and a young RN starting infusing me with preparatory drugs such as Benadryl and steroids before the Taxol and later Carboplatin.

The moment the Taxol starting flowing into my system I had a series of “Oh no!” reactions that indicated a severe hypersensitivity to the drug. A crowd of nurses came on the scene.

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May 4, 2016 By e-Patient Dave 4 Comments

A mistake, and an apology to Medicine X

In life, in relationships, and in social movements, sometimes things get messy. Despite all the things I’m committed to, I made a mistake last fall while extremely over-tired, and behaved offensively to someone I didn’t even know, a volunteer at the wonderful Stanford Medicine X conference (MedX), about which I’ve written so favorably here and on e-patients.net and even in the BMJ. They’ve decided to ask me to sit it out for a year (i.e. not attend), and I accept it – it’s reasonable. I apologize to MedX and I apologize to the volunteer.

I believe in introspection – “the examined life,” as they say – and continuous self-improvement. So later I’ll say a bit more about what I’ve learned while thinking about this. (Update: that post is here.)

April 27, 2016 By e-Patient Dave 1 Comment

This.

Here it is, all in one picture: the future of healthcare. At least a lot of it.

These are the topics Lucien Engelen has been talking about, the concepts he’s been developing, since arriving at Radboud University Medical Center (RUMC) in Nijmegen, The Netherlands. You MUST pay attention to what he’s thinking about, because it’s coming, and most people don’t know it yet. So study that picture.

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