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.
Amy Berman testifies before the Senate Special Committee on Aging.
When I was first diagnosed with end stage cancer, I wanted to find a way to use my experience of care to inform people, families, health care providers, and policymakers about the attributes of good care for the seriously ill.
So it was a great honor to be asked to testify before the U.S. Senate Special Committee on Aging in Washington, DC along with Dr. Atul Gawande of Being Mortal fame and Dr. Kate Lally, an extraordinary palliative care physician. The John A. Hartford Foundation is proud to support both of their organizations’ work to improve the lives of older adults.
JAHF President Terry Fulmer, left, showed Kathrin Lozah the connection between passion and innovation during Lozah’s six-month internship.
Working in a setting that has a diverse group of people with differing backgrounds, education, and experiences who are passionate about what they do creates the ideal habitat for innovation. That is something I learned very quickly in my time working as an intern at The John A. Hartford Foundation over the past six months.
The variety in the skill set of the JAHF staff creates the perfect environment for developing multidisciplinary teams, fostering partnerships, and improving overall creative potential. Degrees and education among the staff members vary significantly, ranging from RNs to MPAs, PhDs to MPHs, and many more.
Editor’s Note: Today, we welcome Pulitzer Prize-winning writer Ellen Goodman, co-founder and director of The Conversation Project, to Health AGEnda. The Conversation Project is part of a $3.5 million John A. Hartford Foundation grant approved in March supporting an exciting collaborative of six practitioners who will work cooperatively to expand the availability and improve the quality of advance care planning and end-of-life care. Since it was launched in 2010, The Conversation Project has focused on helping families and friends talk openly about their wishes for end-of-life care in a way that makes sure those wishes are not only expressed, but respected.
When we launched The Conversation Project, we knew the importance of encouraging people to express their wishes for end-of-life care before there was a crisis. In a survey we did, people often gave the same excuse for not having the conversation: “it’s too soon.” To which we always replied, “It’s always too soon, until it’s too late.”
There is nothing that shows the wisdom of that statement more than the terrible experiences of families and friends whose loved ones suffer from Alzheimer’s and other dementias. We—and my family is part of that “we”—often feel tragically unable to have these important conversations after someone we love goes into cognitive decline.
Rachael Watman shows off her prized cow skull, as a passing plane causes dog Rebel to wonder how the skull ever got through airport security.
In May, I will leave The John A. Hartford Foundation to become the Vice President of Programs at the Rita & Alex Hillman Foundation. Naturally, I’ve spent time reflecting on my 13 years here. I’ve learned many lessons, gathered best practices, and worked with some of the smartest people in the nation.
The memory that stands out, however, involves a cow skull.
We are excited to announce a new national poll released today that shows physicians clearly understand the importance of talking with older adults about end-of-life care, and that they overwhelmingly support a new Medicare benefit that reimburses them for holding advance care planning discussions with patients.
Very importantly, the poll also provides valuable insights into some of the barriers that keep physicians from having advance care planning conversations. The survey of primary care and specialist physicians in 50 states was supported by The John A. Hartford Foundation and our wonderful partners at the California Health Care Foundation and Cambia Health Foundation. We will delve even further into the barriers we uncovered, as well as strategies for overcoming them, with a series of interprofessional focus groups of health care providers later this year.
The survey released today—Conversation Stopper: What’s Preventing Physicians from Talking with Patients about End-of-Life and Advance Care Planning?—opens a window to the personal views, feelings, and even fears of physicians concerning some of the most sensitive and important interactions they have with patients.
From right, Amy Berman, John A. Hartford Foundation President Terry Fulmer, Jon Broyles of C-TAC, and Bud Hammes of Respecting Choices engage in a convening held in June 2015 by JAHF on “End of Life and Serious Illness.”
The John A. Hartford Foundation’s dedicated staff is constantly monitoring the dynamic health care landscape to identify powerful opportunities for large-scale change that will result in better care and better lives for all older adults. I am very pleased to announce that our Trustees last week approved three new grants totaling $6.7 million that leverage these opportunities.
One of the keys to effective grantmaking is to partner with innovative leaders at the very top of their fields. That is certainly true of the Foundation’s new grants.
This is the third in a series of seven issue briefs.
The John A. Hartford Foundation Change AGEnts Initiative accelerates sustained practice change that improves the care of older adults. It does this by harnessing the collective power of The John A. Hartford Foundation’s interprofessional community of scholars, clinicians, and health system leaders.
In December 2015, nearly 100 John A. Hartford Foundation Change AGEnts gathered in Philadelphia, PA to identify challenges and opportunities for improving care of older adults in several care settings and issue areas. Each group worked toward identifying actionable areas for John A. Hartford Foundation Change AGEnts, the Foundation, and colleagues in the field to pursue. The brief below represents the summary of the End of Life and Serious Illness group’s proceedings and should inform future work to create widespread and systemic changes in the care of older adults.The other issue briefs will be published on Health AGEnda over the following weeks.
Amy Berman, on a recent trip to Hawaii. “I have done so much more than survive. I have thrived.”
The end of October marked five years since I was diagnosed with stage IV inflammatory breast cancer, a life-limiting disease. A small fraction of people (11-20 percent) in my situation survive to five years.
Clearly, I have survived. But I have done so much more than survive. I have thrived. I still work and enjoy a great life. I feel good. And unlike most people with my medical condition, I’ve never been hospitalized—no surgery and none of the combination infusions. I take medication to hold back the cancer but, with my team, I choose treatments with the least burden and side effects. And this has helped me thrive!
Amy Berman prepares for her single, larger dose of image-guided radiation therapy.
Editor’s Note: The following open letter to the Centers for Medicare & Medicaid Services, written by Senior Program Officer Amy Berman, was originally published by the Washington Post on Sept. 28, 2015. To read the article on their site, please visit A nurse with fatal breast cancer says end-of-life discussions saved her life.
To: Centers for Medicare & Medicaid Services: