For 2-1/2 days in early December 2013 in Boston, MA about 350 people (roughly 90% medical providers and 10% citizens) convened to ponder the problems of medical overuse, underuse, and misuse; From Avoidable Care to Right Care. This lay person end-of-life reform advocate attended on scholarship. The Institute made an investment in me as a change agent; this report is one small way to pay a dividend on it.
The Lown Institute was founded by Dr. Bernard Lown, inventor of the cardiac defibrillator and co-founder of International Physicians for the Prevention of Nuclear War (awarded a 1985 Nobel Peace Prize). Personal note: in 1985 I watched my father’s stopped heart get jumpstarted through defibrillation; he lived another 19 years.
The 2013 conference was the second in a planned series addressing medical overuse. Possibly the most effective conference I’ve attended (which is not many), the opening session was a plenary lasting roughly three hours with many other sessions running 90 minutes. Compared to the usual conference schedule of shorter breakouts, this structure provided reasonable time for panelists to present their viewpoints and ample time for audience participation. The plenary format throughout meant that everyone shared in the full proceedings.
Although the over-delivery and over-“consumption” of medical services can occur anytime throughout our lives, the fact that about one-third of the US healthcare dollar is spent in the last 6 months of life means that my focus on dying in peace automatically puts my work in alignment with Lown’s goal to effect a healthcare paradigm change.
I’m a small fish in this ocean: no fame and limited reach. I don’t get out much and am certainly not a policy wonk (many other “patient activists” do and are, conversant with an alphabet soup of agencies and regulations). I’ve chosen to try to help my fellow citizens directly rather than to work for policy change — there’s too much unnecessary pain around dying and death to wait; we each must act for ourselves and teasing out how requires dedicated study and huge effort.
For me the conference was an eye-opener. At the pre-conference mixer I experienced two instances of groups of male doctors dissolving shortly after I approached and introduced myself. In at least one instance I inserted myself into the group because I had spotted one person I wanted to meet and engage. At the time I wondered if the dissolution represented a discomfort by a dissociated medical cohort with me as a lay person. Now I suspect it was more an act of respect, allowing personal space for new bonds to forge. I learned that Lown (the man and the institute) and the majority of attendees represent a radical medical cohort that I had no idea existed. This was amazingly-to-me evidenced during Dr. Lown’s keynote when he cited “unfettered capitalism” as the primary culprit in a medical overuse milieu that, as former Medicare chief Don Berwick earlier pointed out, is the only sector showing financial growth compared to every other governmental-social sector (so much so that today’s trajectory left unadjusted would result in 99% of our gross domestic product consumed by medicine by the year 2085).
The existence of a radical medical cohort was an astonishing discovery; I had no idea that one existed. The axis from which I view medicine has tilted a bit.
Dr. Iona Heath (former president of Great Britain’s Royal College of General Practitioners) recalibrated my internal gyroscope through her keynote-delivered distinction between cynicism (doubt) and skepticism (doubt plus hope). Although my work is known to be balanced, my directness, focus on aspects that are generally undiscussed, and the unusual prism through which I see and examine obstacles to peaceful dying sometimes result in people interpreting what I offer as being harsh or divisive. Yes, my outreach is borne of very bitter experiences with both of my parents’ deaths, none of which cannot be undone. I question how much change I can expect in my remaining lifetime and hence remain very wary about future engagement with in-hospital medicine. Iona helped me see that because my work is hopeful my core orientation is not cynical (despite my wry nature), but rather skeptical. Skepticism relates to being a tough sell, and that’s a useful attribute for anyone devoted to their own and their loved ones’ medical safety any time in life, especially near life’s close, and especially not wanting to make similar mistakes a third time around.
Dr. Leana Wen and I connected through a shared orientation around transparency. She promotes complete financial transparency between herself as doctor and her patients and proposes the same throughout her field. I’ve recently come to view end-of-life medicine as an opaque dying marketplace where citizens have no advance idea of their providers’ orientation, ethics, and range of services—a situation requiring transparent advance disclosure to prevent the real (perhaps prevalent) risk of having to extract one’s family from a dying situation counter to one’s wishes and values. Opacity in the dying marketplace is a new concept for me and this compact expression always requires me to “unpack” it, to explain. The moment I uttered the phrase Leana beamed with a sense of shared values. How refreshing to be instantly, completely understood.
The man I interrupted a mixer group to meet was Dr. Dennis McCullough, author of My Mother, Your Mother, in which he explicates and promotes the geriatric application of Slow Medicine, a broad medical (and social) movement that first emerged in Italy. Along with his Slow Medicine partner Dr. Ladd Bauer, we opened a relationship through a mild evening’s walk to Chinatown and over a subtly-flavored scrumptious dinner. Dennis mentioned the birthing of a group interested in exploring and introducing new language to help everybody revision the humane end of life and suggested a possibility of my involvement. Those familiar with my work, from Notes from the Waiting Room through Windrum’s Matrix of Dying Terms, know that right and sometimes new language is its central unifying thread; I have deep interest in a broader inquiry into finding the best ways to express all this.
Of personal note, too, was meeting Dr. Joann Lynn. We’d engaged briefly via email last year after I sent her my addition to her legacy graphic depicting the three basic, disease-course dying trajectories (I added a fourth trajectory for medical error). Through her panel participation and recent JAMA article reprint I obtained a deeper understanding of her spot-on assessment of what’s necessary for humane aging.
Holding Dr. Lown’s hands after his keynote was a particular honor and kick; at 92 he’s a delightful combination of an enormous scientific and moral presence in a now-frail body overlain by the unabashed personality that only the elderly can manifest with social impunity. I saw more than a little of my father in him and the moment brought tears to my eyes.
Left: Bernard Lown; right: Mort Greenberg (whose families originate from the same part of the world)
Dr. Lown and the Institute are interested in a medical-social course correction on a massive scale (a 180º redirect). Owning that doctors have oversold medicine’s efficacy, the Institute seeks leverage to change perceptions and choices. The third day’s working groups focused on searching for it across various related spaces. The workgroup I attended, public engagement, concluded that it’s too early to try to directly leverage the conference theme “overuse” — this in response to the organizers’ disposition toward convening town hall meetings on the topic. Clearly, the Institute is searching for some alchemy through which to accelerate a society-wide shift regarding our perspective on and use of medical services.
Personal refreshers arrived in the persons of fellow activists I’d either initially met at IHI/Orlando/2010 or with whom I’ve engaged in various Facebook groups and met for the first time in Boston. Among them were Helen Haskell, Kathy Day, Rosemary Gibson, and fellow Walking Gallery member Randi Oster, who finally donned her jacket on day 3 (I wore my Regina Holliday jacket throughout; until Randi joined in I was the conference’s sole Walking Gallery representative). Some activists left the conference regretful at the lack of direct attention given to medical harm — apparently the third rail of the medical reform conversation even among the most liberal medical cohort.
I wound up referring to the jacket’s image, blatantly visible throughout the plenary amphitheater, as I stood mid-aisle to speak. I was surprised and gratified that the audience felt moved to applaud comments I made on both days. At the risk of grubbing for minutes, my second day’s comments (which I would have made mid-day during the visioning session but we ran out of time so I made them as part of the conference close) addressed deep themes which have emerged for me. These have to do with medicine taking too much upon itself, both of good-heartedness and of misplaced sense of ownership of our dying, and the need to find the will and wording to push back primary responsibility for dying in peace to the citizenry; and with the need to make transparent that opaque dying marketplace so that patient-families can easily pair with providers and institutions who share a common end-of-life treatment orientation. I don’t think my comments went longer than the longest others, and I felt impelled to offer them to the group at large as part of a dividend payment on the investment the Institute made by funding my participation (“carpe diem” all around).
I can’t directly change medicine (unless conference organizers decide that my viewpoints would be valuable for providers to hear at length), but I can incrementally help effect change by helping patient-families identify, assess, and overcome the range of obstacles to peaceful dying that both medicine and we ourselves erect. The Lown Conference opened my eyes to the existence of delightful providers, some of great and even renowned accomplishment, who share my values; and my heart to a kinder self-assessment that has already softened the overall context in which I deliver my insights and learnings.
And lastly, an unanticipated benefit of the immersion was to break an internal logjam I’ve had about how to proceed with offering workshops on Overcoming the 7 Deadly Obstacles to Dying in Peace. I now have a plan for how to shape an introductory evening to provide maximum participant choice in shaping it and to set up interest in a full day follow-on.