Search the KHIT Blog

Friday, July 26, 2019

Louise Aronson, MD: a home run on "Elderhood."

Just stop whatever you're doing, buy this book, and read it closely. Lordy, Mercy!
From the Amazon blurb:
As revelatory as Atul Gawande's Being Mortal, physician and award-winning author Louise Aronson's Elderhood is an essential, empathetic look at a vital but often disparaged stage of life.

For more than 5,000 years, "old" has been defined as beginning between the ages of 60 and 70. That means most people alive today will spend more years in elderhood than in childhood, and many will be elders for 40 years or more. Yet at the very moment that humans are living longer than ever before, we've made old age into a disease, a condition to be dreaded, denigrated, neglected, and denied. 

Reminiscent of Oliver Sacks, noted Harvard-trained geriatrician Louise Aronson uses stories from her quarter century of caring for patients, and draws from history, science, literature, popular culture, and her own life to weave a vision of old age that's neither nightmare nor utopian fantasy--a vision full of joy, wonder, frustration, outrage, and hope about aging, medicine, and humanity itself. 

Elderhood is for anyone who is, in the author's own words, "an aging, i.e., still-breathing human being."
This book jumped the line that is my never-ending book queue. I couldn't put it down. I bought my wife her own copy (the "elderhood" topic is about us). I tweeted,
While digital infotech was mentioned only relatively sparely, this jumped out, and is relevant to our original core KHIT topic:
For every hour they spend face-to-face with patients, doctors now spend two to three hours on the electronic medical record, or EMR. They also spend “pajama time” at home at night finishing electronic notes they can’t finish during their long workdays. Many of us lament this. Much less discussed is how technology that has undermined efficiency and the doctor-patient relationship became the national standard. Or why medicine bought electronic record systems from businesses with vastly different priorities from those of clinicians and patients, or why, having seen the harm to clinicians in systems that already adopted that technology, more and more health care organizations followed suit. Instead, we discuss the alarming, increasing rates that doctors get sick, take drugs, get divorced, and leave medicine, and how they commit suicide at rates higher than the general population. We institute programs on wellness and resilience, but don’t change anything fundamental about the priorities and systems that make such programs necessary. We blame the victims.

As a doctor, I use the particular electronic medical record that holds the health information of a majority of Americans. It’s a system designed to facilitate billing, not care. Its greatest asset is that the accounting department can quickly find the information needed to plug into formulas that link activities to charges. To make their jobs easier, we clinicians must provide required data in specific places in interconnected windows that resemble nothing so much as a fun house where doors lead to doors, and mirrors lead to confusion. We are also strongly encouraged to use standardized text, as if my visual disability or cancer surgery or inflammatory arthritis were identical to yours. Or as if one doctor’s take on a particular patient were always identical to another’s. This need to input copious information in particular language and places incentivizes cutting and pasting old notes to make new ones, and erring on the side of leaving things in rather than highlighting what may matter most. Medical notes are now so full of noise and jargon that it’s often impossible to figure out what actually happened during a specific encounter. One night on call, the lab paged me about a dangerously abnormal test result in a cancer patient I don’t know. I read and reread her notes, unable to tell which of the three cancer diagnoses on her chart was active. This is typical. Meanwhile, patients’ illness stories and their doctors’ analyses of those particular experiences, neither of which aid billing, are often altogether absent.

Electronic medical records are not the only contributors to physician burnout, but they are the technological embodiment of the nefarious values driving our health care system. The biggest EMR company apparently dismisses complaints from patients, doctors, and nurses. Our concerns don’t matter, I’ve been told by multiple sources, because we’re not their customers. Medical centers and health systems are, and they just keep on buying the product. In defending their actions, health leaders tout the EMR’s reliability, its accessibility from anywhere, and its usefulness for research and quality improvement. Those are significant benefits. Unmentioned is its often redundant, recycled, and outdated information or its frequent, significant, systematic information gaps with real potential to harm or kill patients. Such flaws would not be tolerated by most businesses or consumers. As anyone who works with data knows: garbage in equals garbage out.

I do not feel sentimental about the days of handwritten patient notes and the illegible, sometimes unsafe, hard-to-find, and practically impossible-to-share records they produced. But I do feel nostalgic for something essential that was lost when they were replaced by electronic record platforms. Heedlessly and unnecessarily, this particular approach to cyberdata collection has desecrated the most precious, meaningful elements of the patient-doctor relationship: the human connection, direct and intimate, laden with subtleties, significance, and respect for each person’s unique feelings and needs. In our brave new world, very little worth is accorded to activities such as spending a clinic visit talking through the impact of a patient’s new diagnosis on her health and life or building the sort of relationship that enables discussion of the real reasons why another patient can’t lose the excess weight causing his diabetes and high blood pressure. The things I most want from my doctors and try hardest to give my patients—things like attentive listening, shared decision-making, and individualized treatment—don’t much matter. In such a system, I am penalized if my patient doesn’t get a colonoscopy, something the EMR and my health center track, but struggle to find a place to document the half hour I spent with her and her daughter discussing why her multiple advanced illnesses and short life expectancy mean that she would likely incur all the risks and inconveniences of that screening test but none of its benefits.

The screen-focused physician is one reason patients complain doctors don’t listen or know them. It’s one reason 81 percent of physicians now say their workload is at capacity or overextended; half would not recommend medicine as a career. It’s not that electronic records are the sole cause of the historically unprecedented disillusionment of doctors today, but they are paradigmatic.

Erosion results in a wound, the worn-away part present like the negative space in a sculpture. When I tried to learn how best to use our new electronic record system, my institution sent me to trainings with a young man who informed my large group of doctors that he hadn’t been trained on what he called “the clinician interface.”

Months later, when I went to the lead doctor in our practice to ask for help because the system-generated notes seemed so worthless that I found myself creating both those required checkbox, robotext records and also narrative notes that captured the important elements of my patient visits, her unspoken words and actions made me feel that she thought my concerns were the time-sucking ramblings of a technologically inept person with an irreparable cognitive deficit and an annoyingly flawed character…

Aronson, Louise. Elderhood (pp. 217-220). Bloomsbury Publishing. Kindle Edition.
Not exactly a new complaint. She's at UCSF, which means she's on Epic. Since I retired, my patient world has been all Epic all the time (they pretty much dominate the SF Bay Area, and as a Kaiser member in Baltimore since June, my chart is now on Epic as well).

While Dr. Aronson cracked on EHRs in a few pointed venting-her-frustrations passages, the book's emphasis delves deeply into her personal story as a child, then a grown daughter / caregiver, her medical education, residency, practice, episode of burnout, and eventually professorship. Particularly moving are her stories of numerous elderly patients. as well as her candid revelations of her personal reactions to now being an "aging" woman.

A truly marvelous read.

From another of my tweets:
"Elderhood." You either die early, or it awaits you. This elegantly written, painfully probing, insightful, humane book should win multiple literary awards.

Interesting post up at THCB: "Doctors will vote with their patients."

The author's book:

...When Donald Trump expressed his cluelessness—“Nobody knew that healthcare could be so complicated”—before a meeting of state governors in February 2017, he was referring to our approach to health insurance, which has been a political piñata whacked by both left and right for decades. But even when we Americans acknowledge the absurdity of our convoluted system of third-party payers, and the pretzel positions our politicians weave into and out of as they try to justify it, reform it, then unreform it, many still find solace in telling themselves, “Well, we still have the best health care in the world.” 

In point of fact, we’re not even close to having the best health care in the world. As legendary Princeton health economist Uwe Reinhardt said, “At international health care conferences, arguing that a certain proposed policy would drive some country’s system closer to the U.S. model usually is the kiss of death.” Our system is marked by extreme variability, a nation of health care haves and have-nots. The fortunate receive services from immensely talented and dedicated physicians, nurses, and other caregivers, and they have access to drugs, devices, and facilities that are the envy of the world. All others struggle just to stay healthy without going broke. Americans spend from 50 percent to 100 percent more on health care as a share of GDP than people in other industrialized countries do, and for all our high expenditure we get collective outcomes that are demonstrably worse. In fact, we get outcomes that are, in general, truly dismal...

Magee, Mike (2019-06-03T23:58:59). Code Blue. Grove Atlantic. Kindle Edition, locations 92-98.
Add one more to the endless reading list. BTW, apropos of the "medical industrial complex"
 Dr. Mike alludes to repeatedly in his book, see "Can medicine be cured?"


My latest snailmail edition of Science arrived the other day. The cover art:

"Glacial Melting." The article is quite technical, but, in plain English, the news is not good.
Ice loss from the world’s glaciers and ice sheets contributes to sea level rise, influences ocean circulation, and affects ecosystem productivity. Ongoing changes in glaciers and ice sheets are driven by submarine melting and iceberg calving from tidewater glacier margins. However, predictions of glacier change largely rest on unconstrained theory for submarine melting. Here, we use repeat multibeam sonar surveys to image a subsurface tidewater glacier face and document a time-variable, three-dimensional geometry linked to melting and calving patterns. Submarine melt rates are high across the entire ice face over both seasons surveyed and increase from spring to summer. The observed melt rates are up to two orders of magnitude greater than predicted by theory, challenging current simulations of ice loss from tidewater glaciers.
Expect the inertial Denialism to continue, though. Right, Donald?

More to come...

No comments:

Post a Comment