May 8th, 2020
This post is a continuation of thoughts on what we need to put in place as we rebuild our world. The pandemic has revealed or underscored so many systemic inequities and injustices that it is clear that we will have a lot of work to do, even if we didn’t have deniers, ideologues, and others who want nothing more than to return to some idealized – and never existing – past. Different posts have or will be dealing with many of those issues.
This one has to do with health care:
First a personal story. Going back 2 decades, a time came when I had increasing responsibilities for my elderly parents’ health care decisions. It wasn’t easy for many reasons. One was that they were private/secretive [chose one]. My brother and I were kept in the dark about their medical situations, their preferences, and more. This was particularly challenging when hard decisions had to be made for my father and we had no clue that there were documents specifying his preferences. There were medical interventions that went beyond his written preferences, but we never knew about them, and our mother either forgot or chose not to share them with us. It was only when we were called upon to help resolve his estate that we came upon the documents.
I am sure that this story, abbreviated to be sure, is familiar to many, but it is not the primary part of my narrative with real implications for public policy and medical practice.
The second part of the story does, and this has to do with my mother. After my father’s passing, she went from denial to dementia in rapid order. Our responsibilities grew including taking her to medical appointments. One of the pleasant surprises was to learn that all but one of her physicians were connected to the large University of Pennsylvania health system. And Penn had already instituted shared computerized information between all physicians in the system. Our mother had no clue what her ailments were, what medications she was taking, and more. Fortunately, at every medical appointment, each specialist could promptly identify all of these things. It was a difficult decade but made easier knowing that there was a level of coordinated care that we would simply have been unable to do on our own. [Since we had uncovered that her medical directive was identical to my father’s, when there were genuine end of life decisions to be made, it was very clear to us and to the medical team what to do and what not to do.]
To bring this personal story to a close, let me add my own experience much more recently. As many readers know, we moved from NYC to Washington DC 2 ½ years ago. Among the challenges of relocation is the identification of health care providers. In New York, I had the benefit of having the equivalent of a concierge doctor who coordinated my health care and I lived walking distance to numerous world class institutions. The quality of my care was a luxury, to be sure, but never in question. When moving, I hoped to find a world class health care system that would replicate the benefits of the coordination of information that Penn provided for my mother a decade and a half ago.
Since Johns Hopkins fit the bill as a world class health system, I decided to find specialists who were connected to them. Hopkins had developed a presence in DC, including 2 first rate hospitals and an entire network of affiliated physicians. Seemed like a perfect transition. And, indeed, I have found a number of first-rate specialists with that affiliation. But what I discovered was that, even there, the computer systems are not interconnected. Each department asks for its own information with its own software. While I suspect it is more interconnected for in-patient care [fortunately I haven’t had to find out], it was a bit disconcerting to see that this world class medical system hasn’t found a way for all of its related medical staff to access the same data bases. I am well aware that there are privacy issues – and I am not dismissing them. But privacy should apply to access and not to compatibility.
My own story is only indicative of the shocking and embarrassing gap that has become so glaring during the COVID-19 pandemic. Even setting aside the corruption and dishonesty that regularly is spewed by White House officials, what we have seen is that this system that many pretentiously still consider the best is flawed, underprepared, overly dependent on competitive private sector resources, and implicitly exacerbates the inequitable access reflective of race and class divides. Why don’t we have accessible data bases? Why are there shortages of medicines and equipment? Why need there be competition among States, and between the States and the Federal government?
The pandemic has exposed the deepest flaw in the US healthcare system – that insurance should be connected to employment. Why? Why is the US the only major nation with this bizarre – and unjustifiable – approach? [Yes, I do know the history of how we got here, but watching millions of people lose their health care along with their jobs should convince even the most reluctant ideologue that the post WWII approach has become both unsustainable and immoral.]
At this point there should be no reasonable objection that the “next normal” includes health insurance for all. [I don’t care what it is called since any nomenclature has become partisan. I only care that it happens – and, I believe so should our public policy commitment.]
I began with my own dilemma with our flawed system. Let’s face it: my challenges are those of “privilege”. For too many millions, health care access is literally a life and death issue. If we are serious about the “next normal”, that must change.