By David Longnecker, MD
As Americans, we all have the right to “have our own say.” However, when faced with an advanced illness, are individuals guided toward the same principle? People who struggle with multiple chronic diseases or terminal illnesses are faced with difficult decisions, a bewildering health care system, and seemingly insurmountable obstacles. Providers can do much to alleviate these obstacles by seeking the patient’s voice in the plan of care, but many are uncertain how to do it effectively. We suggest that clinicians, patients, and caregivers seek direction from seasoned leaders in advanced care management.
The public and providers will benefit if this advice is heeded. With commitment and leadership, change will come through improved public and private policies and enhanced provider capacity to deliver person-centered care, including palliative care, for those with advanced illness.
From my practice experience and through work with the Coalition to Transform Advanced Care (C-TAC), I have seen the need to improve advanced illness management, person-centered care, and cost-effective care. In our January post, we discussed C-TAC’s vision that all Americans with advanced illness, especially the sickest and most vulnerable, will receive comprehensive, high-quality, patient-centered care that is consistent with their goals and values and honors their dignity. We are working with our interprofessional education group to teach important principles of palliative care to our colleagues and external members at large. We are constantly working to expand resources that will help guide today’s practitioners toward these principles.
Fortunately, some new resources just came across my desk; they are especially timely as the “graying of America” unfolds. In a new book, Having Your Own Say: Getting the Right Care When It Matters Most, experts describe how advanced illness care can be improved, and they showcase effective, person-centered models that achieve this goal. The results are impressive: Patients and families report high rates of satisfaction, including better quality of life, and costs come down as well. Having Your Own Say is necessary reading for the medical and public health communities, as well as a resource for policy makers and thought leaders who can influence meaningful change at local, state and national levels.
Other evidence comes from the AAMC’s Readiness for Reform (R4R) case study series, which has issued a new profile of Mount Sinai Medical Center’s Hertzberg Palliative Care Institute. The Institute features a cohesive advanced care planning system among doctors, patients, and their families. The book, this profile, and other resources will be invaluable as we continue our palliative care advancement efforts. All of them emphasize principles that we would want applied to our own care, and likely you would as well. Having Your Own Say was released March 17, and additional AAMC R4R case studies are available for download here.
Liberal use of these proven principles will improve care, improve patient satisfaction, and, incidentally, result in lower costs to both individuals and U.S. health care. A win–win like this is rare and should not be ignored!
—David Longnecker, MD, is director of Health Care Affairs at the Association of American Medical Colleges. He can be reached at firstname.lastname@example.org. Mackenzie Henderson, research and policy analyst to the president, contributed to this post.