My mother passed away recently after suffering from the terrible effects of Alzheimer’s disease for over a decade. About three years ago, I wrote about my experience being with her as she one day suddenly and eloquently expressed her fears and pleaded for understanding. It became clear to me how important it is to listen to people with advanced dementia. We need to show understanding and acknowledgement for who they are, not just who they once were.
These are some of the words of hers that I quoted then:
In health care for older adults (and for everyone really), we know where we want to end up.
It gets articulated in different ways, but generally speaking I think we can all agree we want care for our older loved ones that is coordinated, comprehensive, continuous, and geriatrically expert.
But the path that gets us to that destination is often unclear. To help guide us—the John A. Hartford Foundation and all other stakeholders in the business of health care—we have just funded three grant projects that we hope will shine a light on the way forward.
Patient engagement has been all the rage this week. Health Affairs held a DC briefing for their February issue focused on the topic, highlighting new evidence that patients engaged in their own health care have better health outcomes and can possibly cost the system less.
Our own Amy Berman, a crusader for patient engagement, was on the planning committee for the special issue funded by several of our favorite colleague foundations (she also gave a keynote speech to primary care providers in Massachusetts on this very topic a few days ago).
One of the Health Affairs articles features The Conversation Project, a grassroots national campaign to get more people actively engaged in end-of-life health care choices with their families and loved ones, before a crisis occurs. Health care systems and professionals also have to be “conversation ready.” They must be able and willing to meet the wishes of these activated patients.
Among the authors on the paper is Bruce Leff, principal investigator on the $1.6 million, six-year grant we gave to him and his team at Johns Hopkins in 2005 to disseminate their home hospital program. We thought it was a terrific idea; hospitals can be dangerous for older adults. They often return home from the hospital more frail than they entered as a result of complications like infections, delirium, or medication mix-ups due to poorly managed care transitions. Plus, hospital care is unnecessarily expensive. By admitting older adults who meet certain criteria and have specific illnesses, such as congestive heart failure, chronic obstructive pulmonary disease, pneumonia, and dehydration, among others, Hospital at Home is able to deliver excellent hospital-level care for older patients in the home by providing appropriate equipment as well as daily visits from a doctor and nurse.
Cancer is a leading cause of death in the U.S. and around the world. Nearly two-thirds of those living with cancer are older adults. As policymakers look for ways to provide better care and greater value as a means to bend the cost curve, the nation’s leading health policy journal, Health Affairs, is featuring a themed issue on cancer.
Many aspects of cancer care relate to breakthroughs in science—earlier detection, new medication regimens, and evidence of comparative effectiveness. Yet one aspect of care for the seriously ill is not routine: inclusion of patients and their goals.
I don’t think we do a great job articulating why we do the things we do at the Hartford Foundation. Given the problems of the un- and under-insured among younger Americans and the many issues in aging beyond health (including basic needs like food, housing, and transportation), why do we think aging AND health is an area that is worth our while?
Our answer is fairly simple: We believe that the aging of our society is just the kind of profound social change that calls for philanthropic intervention. While the health care implications of this social transformation are only part of its consequences, they are as serious as any. Plenty of other foundations have shown how health care in the US is not the high reliability, high quality enterprise that we would all like it to be. However, what many of our health funder colleagues don’t focus upon is the tremendous impact that these quality defects have specifically on older adults (e.g., here and here).