Living in the Space “In-Between”: What Can We Count On?

Tuesday, October 29, 2013

Old people walkingOn one level, discussion at the Altarum Institute’s Sept. 26th Policy Roundtable described familiar ground – a dysfunctional health care system that is blind to the needs of vulnerable older Americans. But on another level, the answers and solutions offered were clear and bold.

Senator Johnny Isakson of Georgia started with a call to put the care preferences and wishes of frail elders first and foremost. In August 2013, with Sen. Mark Warner of Virginia, Isakson introduced comprehensive legislation – the Care Planning Act (S. 1439).  “It’s so important,” Sen. Isakson told attendees, “to promote for individuals what they would want done as they advance in age and consider the ramifications of the illness they have, and consult with their physicians, their nurses and their family at a time they are of sound mind and they are planning for the future.” Elizabeth Falcone, senior advisor to Sen. Mark Warner, outlined the bill’s major provisions: a reimbursable benefit under Medicare Part B for voluntary care planning for people with advanced illness that is tied to a measure of frailty; a pilot program that would help define parameters for care coordination services for those with advanced illness (and that would be tied to an individual’s wishes and preferences, as documented in the care plan); grants for broad public education about advanced illness; and development of novel quality measures that can track whether the services that are provided sync with and meet the goals of individual elders.

Relating the story of her mother’s hip fracture, author and journalist Shannon Brownlee underscored the downsides of our system for frail elders who face depression, dementia and mobility impairments: over-diagnosis, unnecessary hospitalizations, and treatments that are ordered with no understanding of an elder’s goals and treatment preferences. Her mother didn’t need hospital services, but she did need highly-coordinated, consistent, and affordable personal care – which was essentially not available.

“The system is not set up to care for people in their homes, it’s set up for rescue care,” Brownlee said. “The alternative for people like my mother and so many like her is to be cared for by families, who often are already stretched to the breaking point. And we caregivers are caught in a bind…we’re trying to help our children get started on their lives and at the same time, trying to care for aging parents.” Solving this dilemma, she said, requires stakeholders and policymakers to spend more time “imagining what we would want…what right care would look like.”

Because we can’t afford to keep doing what we’re doing during the nation’s age wave, American Geriatrics Society CEO Jennie Chin Hansen outlined a vision for what we can do instead. “When we’re talking about this stage of life,” she said, “more than ever a different framing has to occur in the process of looking to care for people in the truest sense.” It’s “not just the best clinical services… it’s about who I am; my hopes and wishes.” The framing that is at the heart of good care plans, Hansen explained, is “a “ready and get set’” blueprint aimed at the future, “a plan for living as well as a plan of care.” And care plans should be shared with family members, she emphasized, “so that there will be less chaos when an episode [of illness or disability] does occur.”

Hansen closed with an observation targeted to health care providers: “There is something that’s interdependent about all of us,” she said, and “even though we’re different players in the marketplace, there’s a way that we can figure out where our common good is.” In effect, the complexities of assisting those nearing the end of life require practitioners to ask themselves: ‘What competency is needed?’ rather than merely deciding, ‘This is my territory and nobody else does this.’”

When it comes to creating new programs, neither Joe Antos of the American Enterprise Institute nor John Rother of the National Coalition on Health Care foresee a separate system of financing for long-term care emerging from Congress. And both think private long-term care insurance has failed to make a meaningful contribution to the construction of a coherent system of long-term care coverage. Rother rejected the idea that “we’re going to have one big long-term care initiative that’s going to solve the problem for everybody. I think instead we need to think about more modest, step-by-step approaches.”

For example, the Affordable Care Act (ACA) is “promoting the patient-centered medical home and rewarding that team of providers, includ[ing] nurses and social workers as well as a doctor, for good outcomes,” Rother noted, along with expanding integrated acute, post-acute and extended care services through models for dually eligible beneficiaries that were pioneered by the Program of All-Inclusive Care for the Elderly.  “For too long, we have continued to overlook, probably because we don’t have an easy solution…the financial aspects and the delivery system aspects of [better] coordinating medical services and long-term care services,” Antos said.  For younger people with disabilities, Rother called for significant expansion of “cash and counseling” models (cash in lieu of services).

Mimi Toomey of the Administration for Community Living (ACL) described stepped-up efforts by the federal government to provide technical assistance to the aging services network. This network is composed of community-based organizations (CBOs) that straddle health care and social services, vary greatly in size and scope, and start at different places in terms of their readiness to adapt to quickly changing systems of care, such as greatly expanded Medicaid managed long-term care systems being created in many states. Recently, “we’ve been doing a lot of work…around business acumen,” Toomey said, discussing questions such as, “How do you price your services? What lawyers do you need to have on board? What is the [financial] risk? What is your shared risk?” In general, she noted, CBOs “speak a very different language” as compared to “the health care community, and we need to bridge that gap.”

Toomey also talked about initiatives on care transitions that involve ACL and the Centers for Medicare and Medicaid Services. “We’ve been doing a lot of work around…reducing 30-day readmission work, and we’re finding what we’ve known all along, that it’s really not the medical condition that brings people back to the hospital. You can have a perfect care plan, a perfect discharge plan, that maybe even includes the family member, only to find out [later] that the person has no food in their refrigerator, and they don’t have a ride back to the follow-up physician. We know that half of the people that are readmitted to the hospital didn’t go see their primary care doctor post-hospitalization.”

Building on Toomey’s remarks, John Feather of Grantmakers in Aging (GIA) raised the issue of the Age-Friendly Communities Movement. This is “a non-top down solution,” Feather said, which focuses on “what a community can do on its own to move forward.” The Village-to-Village Network is one permutation of how communities can come together to solve issues of inadequate support for elders and individuals with disabilities who must have basic supports brought to their homes in order to remain independent. “More and more people understand that we cannot look to the federal government or state government for the solutions to these problems,” Feather said. But “I think we will be able to count on our communities.”

Suzanne Burke of the Council on Aging of Southwestern Ohio talked about how Cincinnati is working to get services right at the community level, funded in part by a property tax and with a strong emphasis on services delivered at home. The story she told is a fascinating profile of a truly empowered Area Agency on Aging.

 “The aging network in Ohio is very strong, and despite a 50% increase in the 85+ population over the last 15 years, we have reduced the use of nursing homes by older people by 11%,” she said.  “We manage 17,000 individuals in our region, who are getting home and community-based services through those programs. That compares to about 3,000 that we’re managing for Medicaid. So all told, we have our hands on 20,000 frail seniors doing care plans and care management, and arranging the services they need to remain independent and home.”

In closing, Altarum’s Joanne Lynn observed that “we have rescued ourselves from most of sudden death and instead have the opportunity to live a long time with bad disease.” Arguing that “there’s a lot of the country where we are wasting money…on the medical side,” Lynn raised the possibility of creating a new type of “special purpose Accountable Care Organization that [is] allowed to be geographic” and to serve a well-defined population of older adults with disabilities.  If such a model is created, it may be possible to “take the waste that is saved on the medical side and make promises on the social services” side that frail elders need in order to have a reasonable quality of life – and to stay out of hospitals and long-stay institutional care facilities.

Ably led by moderator Susan Dentzer of the Robert Wood Johnson Foundation, the panelists shaped an agenda for making advanced old age in America during the 21st century a sound proposition to which we can all contribute, and that we can all count on. Now it’s time to execute it.

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