Please take a few minutes to read the post, One Example of End-of-Life Care in America, written by Dr. John Henning Schumann on his blog, GlassHospital. It relates the real life story of a general internist’s experience treating a frail 94-year-old female patient with advanced Alzheimer’s disease and multiple medical issues. It shares the difficult, non-medical oriented challenges that cut a wide swath across the care continuum when dealing with end-of-life care: the patient, her family, the hospital administration, the attending physician and other clinicians at the hospital.
Several healthcare policy themes are also inherent in this story: the apparent shortcomings of clinical integration and misalignment of incentives that are too often manifested in simply poor communication between clinicians, the challenges with assignment and fulfillment of responsibilities pertaining to an advance directive, the relative effectiveness of evidence-based medicine and how to meaningfully and consistently define transparency in lieu of individual privacy and respect for the patient.
Well over a decade ago I first heard the phrase, “the challenge with our healthcare system is not that we live too long – it is that we die too long.” I wish I knew (or could remember) to whom that remark should be attributed, as I think it aptly describes the ground zero crossroads of public policy discourse we face in healthcare. For all of its publicity and ability to bring out the rancor worst in ideologues, the Affordable Care Act is anything but a comprehensive policy solution.
The modest attempt made in the 2009 pre-ACA bill, HR 3200, which would have compensated physicians for providing voluntary counseling to Medicare patients about such demonic concepts as living wills, advance directives and end-of-life care was chastised as being tantamount to Death Panels by the hopefully soon-to-be-forgotten Sarah Palin. Incidentally, the use of that characterization was given “Lie of the Year” honors by Politifact, considered one of FactCheck’s, “whoppers” and referred to as the most outrageous term of 2009 by the American Dialect Society.
Nonetheless, the characterization continues to resonate in American culture and it highlights the to-be-expected tremendous difficulty in developing a rational policy approach to what for most of us is a very irrational subject: death and dying. And as Dr. Schumann’s post demonstrates by example, those involved in making such policy are most often not those traversing the ground zero crossroads on a daily basis and having to face the difficult choices with patients and their families.
On the other hand, that I am writing to share with you a blog post expressing the firsthand frustration of a physician in the trenches I think reflects a paradigm shift in our society and culture where the art of medicine is emerging out from under the shadow that has been generations of members-only collegiality and exclusivity. I found the candor and directness of Dr. Schumann to be both refreshing and constructive. That it is made available for public consumption is an example of many such blogs now being written on a daily basis by clinicians across the country.
Like many of the healthcare policy issues facing us, end-of-life care holds little hope of ever having a likeable policy solution. The issues surrounding it are just too emotionally laden with undesirable choices. But policies that have the best chance of broad support and sustainability will be those developed under the full light and disclosure of the realities that clinicians like Dr. Schumann are willing to share.