Legislative and Social Initiatives
A national trend is to include informed citizens and harmed patient-family members at medical conferences, typically by offering scholarships for which application is made. Here are scholarships I’ve been awarded and the conferences I’ve attended by invitation in the role as a citizen activist:
Lown Institute 2015 Road to Right Care, San Diego CA
The third Lown conference of radical change agents
Lown Institute 2013 From Affordable Care to Right Care, Boston MA
The second Lown conference of what I term a radical medical cohort for change
Partnership With Patients Summit 2012, Kansas City MO
First national patient-led gathering of patient activists
IHI/Institute for Healthcare Improvement 2010, Orlando FL
IHI’s first national gathering of 50 patient activists among ~6000 providers
Journal of Participatory Medicine, Vol. 5, April 24, 2013.
It’s Time to Account for Medical Error in “Top Ten Causes of Death” Charts
Institute of Medicine 2013 Statement
Closing Statement to the Institute of Medicine’s 2013 Approaching Death Committee:
Dying In Peace Requires Citizen Ownership and Marketplace Transparency
Once per generation’s worth of time the US Institute of Medicine convenes a committee (click here and here) to examine end-of-life issues and offer a report offering their guidance upon them. This year, 2013, is one of those instances. The committee accepts input from professional and lay people in the forms of direct testimony and written submissions, both “formal” and via questionnaire. I regret that I could not make the opportunity to fly to a meeting to speak, but I did send a few proposals in: Windrum’s Matrix of Dying Terms™ and a paper titled “Dying in Peace Requires Citizen Ownership and Marketplace Transparency“. Here’s my full statement. And here’s its abstract:
We all say that we want to die in peace. Several unspoken root causes undermine peaceful dying: the ownership of dying assumed by medicine, and an opaque end-of-life marketplace where provider (both institutional and individual) orientation around end-of-life treatment and ethics is not revealed until after the dying and their families have come under provider control as (in)patients. The Committee’s forthcoming report about how to increase the likelihood of peaceful dying on a national scale must include recommendations to overcome these impediments because they are fundamental issues rarely, if ever, addressed.
The Option to Die in PEACE (Patient Ethical Alternative Care Elective)
Throughout the winter of 2007-08 the Colorado Blue Ribbon Commission for Healthcare Reform accepted 31 healthcare reform initiatives. Mine, The Option to Die in PEACE (Patient Ethical Alternative Care Elective) was the only one focused on improving dying and death in Colorado. During the last Commission meeting—twelve months in—the Commissioners acknowledged that they hadn’t taken it up(!); all their time had been used dealing with general healthcare access issues.
The Option to Die in PEACE remains pertinent. Part of what it suggests is beginning to occur—even if only as tendrils of smokey public discourse—due to the erroneous, but nevertheless useful, introduction of the phrase “death panels.” This in response to a healthcare reform plank that would pay providers for their time discussing end-of-life pathway options with patient-families.
Here is my 3-minute testimony before the joint Colorado Health and Human Services committee during the 208 Healthcare Reform Proposal Commission report.
Here is The Option to Die in PEACE proposal. The proposal was a bit scant; I had not the wherewithal at the time to flesh out the sort of educational outreach the program inherently requires. That aside, more about revisioning our end-of-life can be found in Notes from the Waiting Room, Section 3: The Imperative to Change End of Life.