Category Archives: Health Policy

Using Storytelling to Drive Change

Caregiving_Walk_400pDid 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.

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IOM Study Offers Hope for Solutions to Challenges Facing Family Caregivers of Older Adults

Gary Epstein-Lubow, MD

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.

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Public Understanding of Aging Built on a House of Cards

HoC_300pOver 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.

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Caregiving: ‘A Gift and a Privilege’

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.

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.

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Family Caregiving: ‘A Progression of Life’

Rosemary Rawlins, right, and her mother in "The Bistro."

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.

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Dementia Caregiving: Returning to the Village

The Amjad Family "village" in 2014.

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.”

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Prize Winners in ‘Better Caregiving, Better Lives’
Story Contest Answer the Challenge

Rosemary Rawlins, whose story "Gratitude for End of Life Lessons" tied for second prize in the contest, sits in "the Bistro" with her mother.

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.”

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Aging and Disability Services Need—and Deserve—Support

The Administration for Community Living, aging, disabilityThroughout my career in aging, I have worked for and with community-based agencies. I know how essential these agencies are in helping older people remain well and in their homes by providing and coordinating needed supportive services.

These critical services for older people who have difficulty with daily tasks or younger people with disabilities include home delivered meals, shopping, cooking, bathing, bill paying and/or emotional support, as well as support for their caregivers. In-home assessments determine exactly what is needed for each individual and their family.

The agencies providing these services have always operated on slim budgets funded by federal block grants and philanthropy. Due to funding limits, there are months-long waiting lists for older people who are desperately trying to remain as independent as possible for as long as possible in their own homes.

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Hartford Change AGEnts Action Awardees: A Super Team Bound to Bowl You Over

While most people will be watching the Super Bowl Sunday, Rachael Watman is rooting for another team: the latest Hartford Change AGEnts Action Awards winners.

While most people will be watching the Super Bowl Sunday, Rachael Watman is rooting for another team: the latest Hartford Change AGEnts Action Awards winners.

I am not going to win many fans here: I don’t watch the Super Bowl nor do I really like football.

My husband just confirmed my suspicion that the Seattle team and somebody from New England are playing Sunday; he then schooled me on the details regarding “Deflategate.”

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Care Transitions Evaluation Is Premature and Confusing

As Orson Welles might have said: "We will evaluate no program before its time."

As Orson Welles might have said: “We will evaluate no program before its time.”

One of the first things you learn in “foundation school” is how easy it is to kill even great programs by evaluating them before they are ready.

Nothing innovative starts working on day one as well as it will with practice, adjustment, and refinement. Even more deadly is an evaluation with low-cost methods that doesn’t really provide the information you want and need. One of the painful lessons I’ve learned is to always buy the highest quality and therefore most expensive evaluation you can afford, because it’s cheaper in the long run.

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