In December 2013 I attended my first Lown Institute conference. That theme was From Avoidable Care to Right Care. Even though I knew that the group embraced “slow medicine” values, I didn’t really get their essence until hearing Dr. Bernard Lown’s keynote in which this now-frail, iconic man (who reminded me in several ways of my deceased father: similar in appearance, similarly intelligent and inventive, both their families having originated in the same area of eastern Europe) blasted the medical-industrial complex in unflinching terms. Eventually I spoke up, sharing my newfound discovery and assessment of this “radical medical cohort” as “heirs to the Sons of Liberty.” (I wrote up my experience at that conference here.)
So I was happy to hear the moniker “radical” spoken from the stage in an early keynote during the March 2015 conference (theme: Road to RightCare: Engage, Organize, Transform). I had gone to San Diego intending to expand upon my original insight, suggesting that in order to continue to claim the radical label people would need to take action. It turned out that there was no need for me to say that because the focus this round included a nascent pivot toward action (more on this later).
Structurally, day one presented keynotes and plenaries, day two focused on workshops, and day three exhorted us to action. One night Lown hosted an invitation-only “councils” dinner in which a dozen or so councils (by speciality or area of interest) brainstormed possible future actions to exemplify and promote RightCare principles. For example, doctors making house calls; the end-of-life council crafting and the Institute publishing responses to factually erroneous articles. (The Institute has designated October 2015 as the timeframe for a week of RightCare action.)
I was particularly gratified that anger was brought out of the shadows on day one. Rev. Burns Stanfield (Greater Boston Interfaith Organization) distinguished between hot and cold anger, leading me to tweet that cold anger is the truer forge (this issue is particularly meaningful for me because very recently new allies are appearing behind my own work specifically because my anger has cooled since starting ten years ago; in my earlier years’ presenting I’d occasionally get dinged in evaluations due to participants feeling more heat from me than they found comfortable—apparently not giving much thought to the question of what would motivate a lay person to enter the healthcare reform realm to begin with). I think that acknowledging anger at all, let alone as the salient aspect leading to change, is huge and hugely healthy. Day three brought several historically accomplished change agents onstage to share how they strategized and responded to overcome obstacles in their social change movements, notably Judy Norsigian (Our Bodies Ourselves).
Dr. Vikas Saini (President) and Shannon Brownlee (Vice-president) and their staff now have some concentrated input and strategizing to do to guide October’s RightCare Action week. Mention was made of possibly convening the councils mid-year. My further hope is that the Institute publicizes the week nationwide with enough vigor to cause media to tune in where providers and civilians in media markets throughout the country engage and hopefully publicize their own individual actions. From my civilian seat it’s less important what individual providers do than that the mainstream media publicizes the effort.
Lastly, I was also pleased to hear formally from the stage the restatement of a suggestion I made during Fall 2014 when the Institute brought a daylong RightCare event to Denver’s Anschutz Medical Campus: that Lown somehow facilitate civilians finding providers aligned with RightCare. The speaker proposed establishing a Lown affiliated provider directory.
In addition, some select personal experiences…
I happened to pose the first question of the conference. I asked Dr. Diane Meier, founder of US palliative medicine for her reaction to my idea of establishing a palliative first response system as a parallel to 911 emergency response. She threw me a not-yet-understandable curve when describing her vision of providers controlling (my interpretation) palliative first response versus civilians controlling the choice —(that’s each of us placing a call by dialing a unique number). [note: without a video playback or another conversation with Diane I can neither recall nor assess her response!]
My ongoing and deepening interactions with Dr. Victoria Sweet (God’s Hotel) were a treat; it was a pleasure to be warmly remembered, greeted by, and engaged with this accomplished doctor fifteen months after first meeting and with no contact in between.
Questioning Dr. Angelo Volandes (The Conversation) about civilian access to his ground-breaking end-of-life videos was notable for me given my criticism of the lack of civilian access that I happened to voice on Facebook’s Slow Medicine group only several weeks prior. As was then sharing space-time with Dr. Aretha Davis (ACP Decisions) during her workshop presentation and at the end-of-life table during the council dinner (Aretha appears in and narrates some of the videos).
Meeting Dan Hoefer, palliative/hospice doc from SoCal was potentially fortuitous since my mid-80s inlaws live in the region; their end of life trajectories apparently include cognitive decline, and my primary interest in RightCare is that civilians be able to directly locate providers who ascribe to Slow Med and RightCare principles. Dr. Dan’s practice is currently full but I’m sure he could refer the family should that seem necessary.
Dr. Harlan Krumholz drew forth a few fresh tears from me when demonizing informed consent as practiced in hospitals today as “a sham” — the lack of disclosure and interest around consent requirements, anti-resuscitation overrides, and who really controls led directly to my father’s MRSA-induced death almost ten years ago as I write this. He took my card, commenting about the possibility of exploring an appearance testifying before CMS (Centers for Medicare and Medicaid Services) regarding informed consent matters.
Fellow patient activist Randi Redmond Oster (Questioning Protocol) recounted a huge lesson from the session she led providers through: unlike civilians who consider diagnosis, decision-making, and treatment as three distinct sequential steps in a treatment process, apparently doctors meld these together, conceptualizing diagnosis-treatment as a single step (with no mention of patient-family decision-making in between). The significance of this divergent world-view cannot be understated and Randi’s gift going forward will be to bring it forth in her ongoing and widening interactions with providers.
Dr. Steven Weinberger provided an off-the-cuff surprise admission of personal complacency in the face of medical protocol by describing how, as a patient facing surgery, he acquiesced to what he knew were unnecessary preoperative tests and procedures. That evening a conference-goer from the Robert Woods Johnson Foundation who occasionally rubs shoulders with Susannah Fox, health technology and social media navigator, expressed surprise at and wrote down my suggestion that medicine study itself regarding the phenom where providers themselves roll over when they or their loved ones become patients (their study subjects are, after all, readily accessible).
The Institute very thoughtfully provided full-sized tables to each of three independent authors — me, Randi Oster, and Dr. Andy Lazris (Interpreting Health Benefits and Risks) during one afternoon’s networking/book sale hour. Every little bit of support helps, and I sold half of the short box of books I’d priority-mailed over.
Meeting Julie Berrey, who directs a family foundation interested in funding healthcare initiatives, provides me an opportunity to interact with an agency regarding my desire to fund a palliative first responder system feasibility study.
I met several people representing large employee bases whose organizations are interested in doing something for them regarding end of life education. I will explore the possible contours of this since it’s my direct area of activity.
I designed and printed up a handout, a sort of pictorial vita encapsulating my body of work since becoming a lay end-of-life reform advocate in 2004. I think that recipients found it as useful as I to quickly convey the scope and essence of what I bring to this realm.
Due specifically to Lown’s offering of scholarships (one must make written application for consideration), I both caught up with folks I’d met some years back (Helen Haskell, Mothers Against Medical Error; prominent activist Casey Quinlan) and met for the first time activists and participants in the Facebook world (Greg Mastors and several Slow Medicine contributors).
I resonate with the Lown Institute’s principles. I love hearing straight talk from doctors who are disgusted with what US medicine has become. These spokespeople are indisputably accomplished. Is a Lown-concentrated dose potent enough to cure this country’s healthcare ills, turning us back from profit-driven medical overuse? I don’t know but I’ll do what I can in my venue and associating with those who are drawn to Lown conferences helps me do that.
If you’re a provider who’d like to join with providers who’ve had quite enough wrong care and who are intent on moving the dial toward RightCare, a Lown conference ought to be on your agenda. If you’re a civilian active in healthcare reform and want to associate with providers on “our” side, make application for the next conference. As always it’s up to each and all of us to do the work; conferences are about bridge-building and motivating. Hopefully 2016’s RightCare conference will convene atop some measurable and public accomplishments.