JAHF President Terry Fulmer, right, with Tom Koutsoumpas, co-founder of the Coalition to Transform Advanced Care (C-TAC) and President and CEO of the National Partnership for Hospice Innovation (NPHI), at the Roundtable meeting.
John A. Hartford Foundation President Terry Fulmer and I recently participated in the inaugural meeting of the Roundtable on Quality Care for People with Serious Illness, which was held at the National Academies of Sciences Engineering and Medicine (formerly known as the Institute of Medicine).
As I listened to the impressive group of highly knowledgeable and dedicated health care professionals, patients, and caregivers discuss this important topic, I found myself thinking about my mother. She is obsessed with end-of-life planning. Maybe obsessed is too strong a word, but she does talk about it a lot, and she feels strongly about her preferences in the face of serious illness or critical care.
Today, June 15th, is World Elder Abuse Awareness Day, offering an opportunity for all of us to join a global chorus calling for more awareness and action to end all forms of elder mistreatment.
As a clinician with expertise in caring for older adults, I have made elder mistreatment a priority in my research and practice. It is a common and even deadly problem, but it all too frequently goes undiagnosed and unreported. It has also too often been ignored as the true public health concern that it is.
An estimated one in ten older Americans suffer elder mistreatment, defined as physical, psychological, or sexual abuse, neglect, financial exploitation, or abandonment. I’ve seen it in clinical practice; we sometimes see it in the news. It is horrifying and awful, yet there is much we can immediately do to protect older adults, support their family caregivers, and prevent abuse and mistreatment from occurring.
Click on image above to view or download a PDF of the Dartmouth Atlas Project report.
To fulfill our mission of improving the care of older adults, it is critical to know what is working—and what is not—when it comes to health care for the nation’s growing number of older people. That is why The John A. Hartford Foundation supported a new report from the Dartmouth Atlas Project titled Our Parents, Ourselves: Health Care for an Aging Population.
“This report is really about success,” says Terry Fulmer, PhD, RN, FAAN, president of The John A. Hartford Foundation. “Life expectancy has almost doubled since the 1900s, from 40 years to 80 years today. The number of adults over age 65 also is projected to almost double in the coming decades, from 43.1 million in 2012 to 83.7 million by 2050. This is truly remarkable and something to celebrate. However, we now need to achieve the same level of success in meeting the care needs of this growing aging population.”
Glenda Jimmo is a name you should know.
Mrs. Jimmo, who is blind and had her leg amputated due to diabetes, was the lead plaintiff in a lawsuit brought against the Centers for Medicare and Medicaid Services (CMS) in 2011 by the Center for Medicare Advocacy on behalf of beneficiaries and seven national organizations representing people with chronic conditions. Mrs. Jimmo requires a wheelchair and needs weekly home health services for her complex conditions. However, she was denied Medicare coverage for services on the grounds that she was unlikely to improve.
This rule of thumb—that Medicare services for skilled nursing or therapy should be discontinued when a patient “plateaus” or will no longer improve—is wrong.
The White House Conference on Aging offers a special, once-a-decade opportunity to focus national attention on issues that the John A. Hartford Foundation has been working on every day for more than three decades. So I am honored and excited to be among those invited to attend this year’s gathering on July 13 with President Obama, national leaders, colleagues in the field, and people participating virtually across the country who will all join in a national conversation about our aging nation.
At the John A. Hartford Foundation, our focus is on better care for older Americans. We believe that improving the quality of care and the way it is delivered will result in better health for older adults and lower health care costs for the nation as a whole. “Healthy Aging,” one of four policy briefs drafted for the conference, addresses issues that are integral to the Foundation’s current grantmaking strategies, including managing chronic conditions, and prevention and treatment for diseases and behavioral health conditions.
I fervently hope that the national dialogue sparked by the conference will lead to more widespread recognition of the critical role to be played by health professionals with specific expertise in aging, and will support efforts to develop, test, and widely spread evidence-based models of care for older adults that achieve better health outcomes at lower costs.
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.