By Mark Dann and Anne Montgomery
Tens of millions of us are going to live well into our 80s and 90s, a remarkable sign of progress and achievement that we can attribute to our public health and medical care systems. But as we age, we grow frailer. And at that point, we need a different, gentler kind of care.
The esteemed Boston surgeon Dr. Atul Gawande wrote in his best-selling book, Being Mortal: “We wear down until we can’t wear down anymore.” But this doesn’t mean that we can’t have full, rewarding lives in advanced old age.
Yet today, when many of us encounter how our health care system handles frail elders—our parents, grandparents and friends—many of us think to ourselves, “Oh boy, not this.”
Far too often we witness a loss of autonomy and dignity for our loved ones—unwanted medical treatment that is futile, painful, degrades the quality of life, prolongs the dying process, and results in repeated, unnecessary hospitalizations and social isolation.
There is broad public support for improving our end-of-life care system: Voters of both political parties told exit pollsters on Election Day that they wanted more support for family caregivers, better access to home care and to care workers, and housing that is adapted to accommodate the needs of people who have disabilities.
Moreover, if we look at surveys, consumers tell us they want a system that puts their individual preferences first. We want to stay in a comfortable and familiar setting for as long as possible. We want our loved ones to have their own support system, including counseling and respite. We want to preserve our independence and maintain our dignity throughout the process of receiving care in later years of life. We want that for our family—and friends—and we want it for ourselves.
These are the core principles of an end-of-life care system that honors people and their values, and we need to work at the local, state, and national level to make it a reality. To make this outcome possible for millions of us, we’re going to have to adapt and improve our current end-of-life care system, using the programs and economic resources we already possess.
Fortunately, there are policy reforms that can help achieve these goals.
The Removing Barriers to Person-Centered Care Act, introduced in the last Congress by Senators Sheldon Whitehouse (RI) and Elizabeth Warren (MA), is designed to make it possible to rapidly test innovative ideas by introducing more flexibility into Medicare. Among other provisions, these policies would allow patients to receive rehabilitative services in a skilled nursing facility without requiring a consecutive three-day inpatient hospital stay, as Medicare program rules currently require.
We also have the tools in hand to expand the Program of All-Inclusive Care for the Elderly (PACE). PACE covers all Medicare and Medicaid benefits for program participants, and PACE centers offer social services, meals, adult primary day care, and occupational therapy. PACE is the kind of patient-centered care that virtually everyone wants and is designed to serve people who want to be at home, through the end of their life. And it can easily be expanded to serve Medicare-only beneficiaries with a few commonsense tweaks.
When you enter a PACE program, you and your family sit down with the entire care team to develop an ongoing care plan. You and your family work with a team of medical and social services professionals to determine what is most important to you, how to center care around your needs, and the trade-offs that may come with certain medical interventions.
PACE is not yet a program that is available to anyone who wants it. Currently, it serves only 38,000 beneficiaries in 31 states. As the Trump Administration gets settled, we urge federal policymakers and health care professionals to encourage the Centers for Medicare & Medicaid Services (CMS) to expand PACE to Americans across the country, with strengthened rules for advance care planning practices. A bipartisan group of lawmakers wrote to the Department of Health and Human Services last February, urging the federal agency to expand PACE “because it would help seniors maintain their ability to live in the community.”
PACE is just what we need when we need help. Once a Medicare or Medicaid beneficiary is disabled enough to need comprehensive medical and long-term care services, PACE programs promise to deal with whatever happens, for as long as they live.
Equally important, PACE can be easily adapted to become a population health model—a key goal in the quest for developing—and scaling value-based care models. It already operates in specified geographic areas, and easily links to community-based organizations offering diverse supports to home-dwelling elders.
All Americans deserve much better comprehensive care options as they age. Let’s work together to create them and enable people to take charge of their own care.
Mark Dann is Director of Governmental Affairs at the Secular Coalition for America. With 450,000 members nationwide, it is the nation’s largest nonprofit organization that advocates for improving and expanding options for end-of-life care.