I was recently in New Orleans and coincidently listened to an interview with Robert Wachter of the University of California, San Francsico talking about health IT and his new book on where the nation stands regarding electronic health records (EHRs).
Somehow, the temptations of the French Quarter and the problem of EHRs combined in my mind to produce the image of the nation’s health system out on the town, binging on HITECH Act ARRA money, blackout drunk, and waking up married to some very inappropriate electronic health record system.
This isn’t exactly how it happened, but most of the bloom does seem to be off the rose of the electronic medical record and we are in a phase of regret and disillusionment. Physicians have been complaining for years about the hours added to their days by the workflow disruption of digital data entry and the breach in the relationship with patients created by interacting with the computer, rather than the person. At the same time most of the anticipated fabulous features of EHRs are still in the anticipated stage.
Did you hear the story about the New York woman who fought tooth and nail to honor her father’s wish to die at home, only to have the health care system bounce him from facility to facility? He died in a hospital hospice unit with deep pressure ulcers and a million dollars in costs for care that was unwanted.
Or how about the piano teacher dying from cancer who Atul Gawande wrote about? Through a conversation about her priorities, she returned to teaching his daughter and other students, all during home hospice care over the last six weeks of her life. She focused not on having a good death, but on having the best days possible right until the end.
These are stories that stuck with me. They hit a chord. They struck a nerve. However you describe it, they changed the way I was thinking and compelled me to share them—to get others outraged or to give them hope.
Gary Epstein-Lubow, MD
The first place I worked after completing my geriatric psychiatry training was an outpatient neurology clinic devoted to memory disorders. I soon realized that most patient encounters included other people who, in my opinion, could benefit from my attention: family caregivers—spouses, adult children, close friends, significant others, and occasionally parents—who usually accompanied my patients on their visits and had needs that were not being addressed.
I solved this dilemma of how to work with family caregivers through two action items. First, I honed my personal style to allow multiple opportunities for the patient and family members or friends to report concerns and ask questions. Second, I provided reliable avenues for a designated family caregiver to contact me after the patient visit.
Over the weekend, I walked past my wife and kids watching the new season three of Netflix’s House of Cards and was stunned to see the evil President Frank Underwood ranting at his cabinet to get on with designing his jobs program that would be funded by slashing the “entitlements” of Social Security, Medicare, and Medicaid that are “sucking us dry.”
I gave an impromptu lecture to the family on the folly of this policy position—I’m not sure they noticed. And of course, we’ve also written many times about the false narrative of zero-sum intergenerational conflict. (Read Pitting Older Adults Against Children Is a Zero-Sum Game and Analyze This: Misleading Federal Spending Stats Pit Children Vs. Older Adults.)
But what can anyone do when even television writers feel comfortable with this notion that the benefits that older adults earned in their lifetime of work are a dagger to the heart of the nation? While Underwood is certainly a morally compromised character, in this scene he is actually portrayed as the hero, taking decisive action in the face of a roomful of indecisive, equivocating, naysaying bureaucrats.
Antonio Z. Zuniga, a first-generation Mexican American, who gave inspirational and spiritual lectures in the U.S. and around the world. Here, at the Cliffs of Moher, Ireland, one of the many countries where he once spoke.
After a long career writing primarily for newspapers and magazines, Marielena Zuniga took early retirement with the idea that she would finally be able to accomplish a goal shared by many writers: to get a book published.
She managed to self-publish Loreen On The Lam: A Tennessee Mystery, and also focused on creative inspirational and spiritual writing. But Zuniga soon found herself in a new and unexpected role: as a fulltime caregiver for her father after he suffered a stroke.
Rosemary Rawlins, right, and her mother in “The Bistro.”
For much of the past 13 years, Rosemary Rawlins has found herself thrust into the role of family caregiver in a series of very different scenarios.
First, her husband, Hugh, suffered a severe traumatic brain injury (TBI) after being hit by a car while riding a bike in 2002 and underwent two years of arduous rehabilitation. Then, a year after her husband made a recovery bordering on the miraculous, Rawlins became a caregiver to her parents, as described in her prize-winning story below. And most recently, she helped her husband take care of his father through Parkinson’s disease until he passed away last September, and is preparing to have her mother-in-law move in this spring.
The Amjad Family “village” in 2014.
At the age of 4, Halima Amjad was already telling people she wanted to be a doctor. And not just any doctor.
“I used to say that I want to be Mommy and Daddy’s doctor,” says Amjad, MD, MPH, a clinical and research fellow in geriatric medicine at Johns Hopkins University School of Medicine and winner of the 2014-15 John A. Hartford Foundation Story Contest. “I don’t think I actually meant anything by that, but it ultimately ended up coming true that I chose geriatrics as my parents were getting older.”
Click on cover to read or download a PDF of the report.
Meet Millie Larsen.
Millie is an 84-year-old Caucasian female who lives alone in a small house. Her husband, Harold, died a year ago.
Rosemary Rawlins, whose story “Gratitude for End of Life Lessons” tied for second prize in the contest, sits in “the Bistro” with her mother.
“Every time my Mother has a stroke, she wakes up a completely different person. This is okay because, as my Dad once observed, we’ve liked every person she’s been.”
“In the past few months, my sister has stopped talking. She’ll want to say something, realize she can’t, throw up her arms and roar.”