By Joanne Lynn and Anne Montgomery
For a rapidly aging U.S. population, our current care system has its priorities upside down. It is calibrated to address heart disease and cancer as well as possible, with customized drugs, specialist hospital-based doctors, and 9-1-1 rapid responses. In short, we have a system that is built on the hopes and fears of 50-year-old men wanting to be rescued from heart attacks. If instead our care system had been designed around the hopes and fears of 88-year-old women facing frailty and living with decline, it would look very different.
Turning epidemiologic facts upside down, if dementia and frailty affected 20% of the population per decade, starting at age 50, and if cancer and heart disease affected people mostly older than 85 years old, what would the priorities be? The top concern would be to ensure the essentials of life: having a reasonably safe place to live, with heat and light and an adequately stocked refrigerator. Another would be that when disabilities and bad weather make it very hard to bring food in, or when limited budgets make it difficult to afford nutritious food, a good care system would provide home-delivered meals. Yet another would be ready availability of personal care to help with getting in and out of bed and the bathtub. To combat isolation, guaranteed services would include adapted transportation to make going out as easy as possible, and not just to the doctor. We would build a system in which you could count on those services.
Of course, that’s only the bare bones of existence. We would also ensure that community-dwelling disabled adults had ongoing, meaningful interactions with others: visits from friends and family and help from volunteers to go out to vote and participate in other ways in community life. Nearly all of us seek joy, spiritual satisfaction, and a sense of worth, not just survival. A care system designed with the input of elderly ladies or a counterfactual population of younger persons who may live long lives with disability and dementia would show its commitment to comfort, meaningfulness, reliability, efficiency, and endurance in the face of morbidity and mortality, rather than mainly seeking rescues and cures.
To make it possible to have such a system for tens of millions of older Americans, who rely on their own resources accumulated over a lifetime during retirement and on the resources of publicly financed programs, we need a clear policy path forward. We need a care system that allows motivated medical providers—doctors, nurses, therapists, home care workers, and more—to team up with organizations that offer social supports. These health-related services include respite for overstressed family caregivers, home-delivered meals, transportation, household help and personal care, training on how to manage chronic conditions, and assistance with understanding what health care options are available and desired. To get from here to there, we need to build scalable, beneficiary-focused Alternative Payment Models (APMs) designed to deliver a broad mix of medical care and social supports in the home while gradually reducing overall per capita care costs.
How can we do this? An excellent answer is to create a shared-savings and reinvestment Medicare model, which would allow the program to make an indirect contribution to the health-related services that keep beneficiaries more stable and which a robust body of literature demonstrates can reduce overutilization of hospital services and premature long-stay placement in nursing homes. These savings would be calculated against an initial benchmark and a proposed target and would be given back as part of an end-of-year reconciliation process. The model would require that any savings achieved would be tied to performance metrics, including “guardrails” that require the savings to be primarily directed to expanding critical social supports for beneficiaries. Additionally, a portion would be used to build out a more comprehensive infrastructure, including a dashboard of quality metrics that would monitor the experience of frail beneficiaries and their families, thereby providing valuable information about how to prioritize investments and initiatives with methods that capture both the input of medical care and social services providers. The time to test such a straightforward approach is now, before per capita Medicare reimbursements decline, as they inevitably will with the rise in the numbers of eligible persons.
Developing such a model, which we call MediCaring Communities, might seem to be a daunting challenge at first glance. But in fact, it can be accomplished by motivated providers and community leaders by using existing financial and delivery structures, such as Accountable Care Organizations and Programs of All-inclusive Care for the Elderly.
Today, millions of Medicare beneficiaries often experience recurring, costly crises late in life that result in continued high-cost overutilization of hospitals and premature long-stay placement in nursing homes. A principal reason for this is that the program offers no access to social services and supports needed by beneficiaries, many of whom live with both chronic conditions and accompanying functional limitations. Persons not yet poor enough for Medicaid often scrimp on services, because they are expensive and unfamiliar, ending up with complications that escalate their Medicare costs and accelerate their spending down to poverty and Medicaid coverage. Medicaid, which does offer such services (though often not in an optimal and well-organized way), is available only to those who have spent their lifetime savings and agree to forfeit all but a few assets. From a national policy and economic planning perspective, this makes no sense.
In contrast, investing modest sums today in anticipation of the full impact of the “age wave” 15 years from now in order to test and field APMs designed to offer medical care and social supports is a smart, sensible investment that would do a great deal to help sensibly bend Medicare’s cost curve. It would also accelerate development of measures that are capable of tracking and evaluating a mix of health care and long-term services and supports that could be included as part of public information websites. MediCaring Community programs serving primarily frail beneficiaries in defined geographic areas could develop data dashboards to monitor local service availability, thereby contributing to a planning infrastructure that aims to optimize the experience of the last years of life for everyone.
What does it take to live well in the last years of life? Good medical care counts, and Medicare could do more to improve it. But there’s more. Elders want to be as comfortable and functional as possible. It matters if you can take care of your feet and keep hearing, eyesight, and teeth as intact as possible. Older adults want to be presentable, just like everyone else. Safety matters, but, for most people, not at the cost of losing one’s independence. While people should feel the need to save for old age, an elderly person should not have to become destitute before the community helps out with the basics of food, housing, hygiene, social interactions, and transportation. Family help may be essential, but no one wants to cripple their spouse or the next generation with years of being tied to continual personal care. And many elderly people simply do not have family able to give care or provide help.
Think how different a deliberately designed care system for older adults would be. Rather than poorly coordinated specialists with limited awareness and scope of responsibility, we’d have more physicians specializing in the skills required to deal with elderly bodies and elders as whole persons. Rather than trying to provide and pay for every drug, device, imaging study, and surgery imaginable, we’d focus more on ensuring food, housing, transportation, and caregiver support. We’d cover podiatry, dentistry, hearing aids, and glasses. Having a waiting list for food or housing modifications would be considered unacceptable. Today, meals delivered at home have declined from having no substantial wait nationwide at the turn of this century to having an average of 3 months’ wait. Some cities are hitting a year’s waiting period—for food! Outrageous!
Perhaps most importantly, we’d come to see this as a population-based, community-anchored enterprise. To stimulate this, we’d have community-wide metrics that show how good the care is in that area. Is Springfield, Massachusetts, doing as well in providing what matters most to elderly people living there as Springfield, Virginia? Over time, does either Springfield do better or worse? Are people more likely to live through old age without a fall with injury or without a pressure ulcer or a trip through the ICU? Are elders more likely to retain financial autonomy longer? Are they comfortable and engaged in their community?
To build a better set of social arrangements, we need to provide greater flexibility to providers and organizations working in communities to lead the way. We must offer them the opportunity to listen to the voices of people 85 years of age and older and adapt existing programs to build broader service arrangements that can reliably accomplish what matters most in old age. Let’s start reforming our care system so that it is truly responsive to the needs of the last years of long lives. Join us in urging policymakers to think through these issues. An election is upon us; push your local leaders to deal with frail elders and family caregiving. You can help and have fun doing it, too, if you want to volunteer in the Family Caregiver Platform Project. Check out http://caregivercorps.org and work to get your state political parties on record as supporting any number of improvements that will move our dynamic system forward a great deal faster.