May 282014

While diligently trying to improve care for frail elders, often by filling gaps in the care system, even our most innovative programs tend to work within the constraints that created those gaps in the first place. Dr. Joanne Lynn, Director of the Center for Elder Care and Advanced Illness (CECAI), has been visiting and often coaching many innovative programs as they work to do a better job for their community’s frail elders.

Dr. Lynn reports being inspired and sometimes awed by the deep personal and professional commitments of their program staff. Yet she finds more and more evidence that genuine reforms to create sustainable and reliable arrangements for the services that frail elders need will require breaking out of our increasingly archaic habits. Even the most innovative leaders and programs continue to accept historic barriers and red tape that stymie enduring improvements.

Rules Changes as Game Changers

Think about what you accept in your own work or what you feel that you are forced to accept because of rules and regulations that, in your experience, have simply always been there. Remember, the Centers for Medicare & Medicaid Services Innovation Center can waive most regulations, and even an act of Congress can be undone by later laws. So why do we keep working with the assumptions that home care means being homebound, that skilled nursing facility use means only rehabilitation, and that hospice care requires refusing what the Medicare statute called “curative” treatment? Think about other important changes that we have made in the health care system. Would labor and delivery have changed if we had persisted in thinking that women should be unconscious during delivery? Would hospice have emerged if we had adhered to the belief that randomized controlled trials aiming for small improvements in survival time were all that mattered to cancer patients? Not likely.

Not Just a Body Shop

Yet even our forward-thinking programs continue to categorize people by disease or prognosis. A prominent efficiency contractor (a business working under contract with managed care, bundled payment, or accountable care organizations to reduce expenditures, especially in the post-hospital period) said that its work in the 90 days after hospitalization did not extend to long-term care. Really? A frail elder who needs long-term care is likely to need that care during the first 90 days after hospitalization and planning for the time beyond that. People needing long-term supports need a service delivery system that works with a comprehensive care plan for a good life, not just for a few months of rehabilitation services.

A modern folk song by David Mallet has the wonderful line, “We are made of dreams and bones.” Indeed, each unique individual comes to old age not only with a medical history but, often more importantly, with a lifetime of connections to others, personal and family histories and aspirations, and an array of resources.

Our bodies are not like cars, which can go to the repair shop just for tires. Perhaps a person can sometimes see a doctor for preventive maintenance or repairs to just one body part. But once someone is living with serious illnesses or disabilities, the central challenge is how to live well with those conditions and their treatments. Still, whole sectors of the health care industry continue to operate like repair shops, addressing one treatment, diagnosis, or setting and therefore regularly falling short in providing good care for frail elders.

Comprehensive Care for Frail Elders

Imagine a service delivery system that really worked for frail elders. A key member of a multidisciplinary team would know each person well and understand the particulars of each situation, including strengths, fears, and priorities. The frail elderly person, his or her family, and the care team would develop and agree to a plan of services that optimally helps attain important and achievable goals.

At the same time, an organization representing the community would be continually working toward making available an optimal array of services. Making such an arrangement a reality will require developing new rules and procedures that enable the community to improve service supply and quality. We will have to learn how to evolve from the currently dysfunctional structure, a legacy developed for a different time and a different population with a different set of challenges.

MediCaring Communities

CECAI is now working with several communities whose visionary leaders are moving toward our comprehensive MediCaring® model, learning how to work within current limitations without accepting them. MediCaring offers a strategy that spans settings and time, through to the end of life (and even beyond to support the bereaved). This model goes beyond our traditional focus on medical services by including important services such as housing, nutrition, transportation, social connections, and caregiver support. One idea behind MediCaring is to balance the resources available for medical services with those needed for social supports within each community.

We know that many other communities and organizations are working to similar ends, and we would enjoy hearing more about just what you are doing. Share some compelling stories of how you are using the flexibility of Center for Medicare & Medicaid Innovation waivers or the adaptability granted by capitation or local funding to make a difference for frail elders now! Write us, comment, or share on social media. We are eager to learn from you.

Want to learn more?

The MediCaring reforms:

Building reliable and sustainable comprehensive care for frail elderly people:

Health Affairs blog on efficiency contractors by Dr. Joanne Lynn:

May 272014

Family caregivers are the infrastructure upon which the lives and well-being of millions of frail elders rest. Without their presence, and without their filling in healthcare gaps to coordinate and manage care for their loved ones, whole segments of the healthcare industry would simply collapse.

Although caregivers can find the experience of helping others to be a rewarding one, most pay a physical, emotional and financial toll for their effort. Caregivers, who are often themselves midlife and older women, can compromise their own well-being. Those who leave the workforce to care for another adult lose hundreds of thousands of dollars in income, retirement contributions, and Social security.

Family caregivers are essentially volunteers for long-term care. They routinely plan care, making decisions large and small, that affect the lives of loved ones. They are care managers and coordinators, as well as providers. A 2012 United Hospital Fund and AARP study reported that nearly half of family caregivers provide complex medical care to loved ones–usually, with little or no training in what to do things as they manage medications, clean wounds, change IVs, and more.

Despite their tremendous responsibility for making the plan work, caregivers are seldom integrated into the care plan itself. MediCaring aims to change that dynamic, by identifying, recognizing, and supporting caregivers, and engaging them in development of a comprehensive care plan. While caregivers may appreciate the chance to help a loved one by providing intimate, intense care, they can also feel overwhelmed and exhausted by the tasks at hand.  MediCaring understands that caregivers are, in fact, the anchor of the care team.

To this end, MediCaring teams will assess caregivers, too, and understand their capacity to provide care. What is the their health status like, how are they doing? What challenges do they face, what concerns do they  experience? How is that information processed and addressed in the care plan? Does the plan also include ways to care for the caregiver?

Caregivers can benefit from a partnership with health care and social service providers.  Existing family-centered care models consider caregiver input essential for providing strategic and expert services for both the health and well-being of the care recipient and the caregiver.

The MediCaring team will be trained to recognize the level of support that caregivers need, and to provide information and resources that address those needs. MediCaring teams will also  recognize that caregivers these widely different needs will change over time and as an elder’s condition progresses or worsens.

Assessing caregivers is essential, as is a mechanism for offering them respite services.  Caregivers who feel burdened or overwhelmed experience declines in their own health. By offering services that enable caregivers to  become more competent and confident in providing safe and effective care to their loved ones, Medicaring will reduce some burdens and stress. Research indicates that such interventions must be multifaceted, including both training to enhance efficacy and personal support for emotional and coping skills.

Caregivers who serve as health care proxies face additional stresses. Making decisions for and about another adult is a difficult role to play. Those caring for people with dementia repeatedly face this challenge, and yet often receive little context or training to interpret the meaning or urgency of what a loved one needs.

Navigating the health care system is an onerous task, even for healthy adults. For those who are ill, or vulnerable, or overwhelmed, it can become impossible., Although a number of new programs have been developed to train caregivers, caregivers remain home alone, with inadequate knowledge and resources to deliver proper care.

PBS NewsHour released a telling infographic: “The $234 billion job that goes unpaid,” which characterizes the context of such caregiving. If family caregiving were a federal agency, it would be the fifth largest. Would policymakers simply ignore an entire nation? Or would we aim to help its citizens overcome challenges and realize opportunities? Would we invite them to the table, to conference rooms and negotiations? Would we want them to succeed? It all seems likely—and yet, we have not.

Our healthcare system—and our society—pay lip service to the value of such care, but seldom delivers the supports and services that would

key words: Joanne Lynn, Janice Lynch Schuster, MediCaring book, frail elders, family caregivers

May 192014

Despite surveys that indicate our overwhelming preference to grow old and die in our own home, those among us who grow old and frail are more likely to live in many different settings. The likelihood that we will face old age encumbered by multiple complex health conditions makes it very likely that we will, at one time or another, need care provided by an array of long-term care services and supports. If we hope to stay at home—or, at least, stay in the community—we will need services that support some degree of independence, and help up to fashion security for our finances, as well as our food, transportation, housing, and more. We will need health care, to be sure, but we will need much more—and much more than we needed during the phase of life when we were simply independent adults.

In the aging services world, the goal has long been to provide care in the least restrictive possible environment. With this aim in mind, aging services rely on community-based services which provide an array of services (e.g., not nursing homes and hospitals) that help maintain a person in their own home. These other services are rich and diverse, and include community-based group living arrangements, such as congregate housing; adult foster care residential and assisted living facilities; and community settings, such as adult day care and adult day health.

Community services include:

• care coordination/case management
• personal care assistant and attendant services
• homemaker and personal care agency services
• home hospice
• home-delivered meals
• home reconfiguration or renovation
• medication management
• skilled nursing
• telephone reassurance and monitoring services
• technologies that promote connectivity, monitoring, and telecare
• emergency help lines
• equipment rental and exchange
• transportation.

Community services often include educational and supportive group services for individuals to encourage self-care management, as well as their informal caregivers. In fact, caregiver education is positively associated with the care recipients health and quality of life.

Community services provide respite care to spell family caregivers. Friend and family caregivers are considered part of the focus for MediCaring services, and their involvement is a critical element of MediCaring, which is premised on targeting frail elders who have functional impairment to meet their specific needs.

MediCaring would center on a comprehensive care plan, which would be developed in concert with elders and their caregivers and the MediCaring team.

Today, many community services are in a state of flux; it is not entirely clear how patterns will emerge as Affordable Care Act (ACA) incentives and programs are implemented. However that plays out, there is a growing body of literature that indicates that frail elders at risk of institutionalization can successfully be served in the community. To this end, MediCaring promotes co-location of multiple services under one management unit to help harmonize needed services.

In the near future, we are likely to have computer applications that allow broad and rapid communication about available services to those involved in care planning. In such a system, a MediCaring team could see any number of factors that influence care decisions: the currently available rooms, services, consumer reviews, quality metrics, bus stops nearby, specialist nurse or physician availability, pharmacy response time, and dozens of additional elements in deciding the best and safest place for a person to live.

Any member of the MediCaring team could use the care plan as the basis for coordinating what frail elders and their caregivers need. Services would be flexible in design and delivery: if a team member noticed that outdated pills were causing delirium in a MediCaring member, that team member would be able to contact the appropriate clinician immediately to change course.

MediCaring follows the goals of enrolled elders and their families to help improve, modify, and maintain the optimum level of functioning for each. MediCaring communities will assess their regional resources and demands, while also providing an array of supportive and caring services, assuring continuity of care and following the comprehensive care plan.

key words: medicaring book, joanne lynn, janice lynch schuster, community-based services, frail elders

Apr 212014

A new entry for our forthcoming book on the MediCaring model for care for frail elders. 

Living to be very, very old–advanced old age, the oldest of the old–is not just middle age with gray hair.  It is not. And yet even though we know what is ahead,  very old age will come as a shock to most of us. We have been lulled into thinking that we will all age well–that we will be 90 and still dancing with the stars, or jumping from airplanes. Or we think that we will die with a golf club or a steering wheel in our hands,  a lover in our arms. We expect to go on forever as we always have done, making our own choices, providing for ourselves and our families, and living out our triumphs and despairs surrounded by kith and kin.  We are sustained by complex social and cultural arrangements that influence each of us,and that we influence.  For most of our lives, that framework is almost unnoticed and is enough to meet our needs.  When living with serious limitations in old age, we find that we urgently need assistance for daily needs.

The realities of living with multiple chronic conditions (MCC) and in a challenging economy have changed the experience of retirement. Millions of Boomers will age with  MCCs, such as hypertension, diabetes, glaucoma, arthritis, and even cancer, that will require increasing levels of clinical management to get by. And, at some point, those who survive to  advanced age, will find that at the usual  supports and arrangements no longer match our needs, either for medical care or social services. As we have grown better at preventing or treating diseases like cancer and heart disease,  millions of us will manage to live  into our ninth and tenth decades, developing serious chronic medical problems, and eventually becoming quite old and very frail. Indeed, the fastest growing demographic in America is the 85 and older crowd.

This demographic reality is forcing us to consider another reality:  the challenges often associated with living  into “older” old age, when long-term disability and the confluence of multiple chronic medical problems and diminishing social and financial resources makes a new and unfamiliar set of life challenges. This is truly the new old age: the predictable, but often unexpected, result of better health care and improved public health.

Quite simply, most Americans now face a long slow decline, rather than a short course to death.  For the most part, we will endure this period because life, even when we live with significant health problems, is sweet. But in our current medical and social services environment, enduring will be a real challenge, one that will require significant levels of direct personal help, medical care, and financial resources . We will find that thriving in advanced older age requires  major rearrangements of assumptions about relationships, meaningfulness, and life in general. And many of us will find the task made even more difficult by our collective failure to address what lies  ahead.

Such simple things will throw us off course: One bad fall, and we often cannot live alone in the family home again.  A little more loss of sight, and we cannot drive to get food or to visit friends.  The margin between living as we wish and being in serious trouble becomes quite thin.  Physiologically, people in their eighties and   beyond have very little reserve in most organ systems, so a challenge to the heart, or lungs, or kidneys, or any other organ system leads to evident and serious illness. Unlike younger people, what was once  a minor setback that is behind us within a few days can now lead to death.

The rate of cognitive failure increases dramatically with age: those who make it to age 85 have a 50-50 chance of having serious memory loss as a major part of their life course (1).  Many will have Alzheimer’s type dementia, but some will have strokes, dementia associated with Parkinson’s disease, or another etiology. And those who evade chronic failures of the mind are still at risk of distorted thinking from delirium with a fever, a change in medication, or even dehydration.  The rate of disability for self-care — often called functional disability, or dependency in activities of daily living — also increases dramatically with age.  Most older adults eventually have some problems  walking and moving about.  Many have challenges with communication, incontinence, tooth loss, arthritis, and other troublesome body malfunctions.   These problems continue, and generally worsen, for several (sometimes many) years, through to the end of life.

To live well in late old age, we really have to depend on one another more than we do at any other time in life, except, perhaps, for infancy and early childhood  Sometimes, devices, medications, or simplifying one’s daily routine helps a great deal.  But even then, another person usually must be “on call” in case something goes wrong.  For most of us, there comes a time when we depend on other adults to help us with the most routine acts of daily life, from getting out of bed to getting to the bathroom, from surviving from dawn to dusk.

And yet we do not now have the structures in place that will support our survival. MediCaring offers a new, better, and more affordable model for providing medical care and social services to frail elders and their families. Building it will require ingenuity, trial-and-error, and investment. Whether we build it or not, the very old will come. Build it now, and the future might be easier on us all.

key words: Dr. Joanne Lynn, Medicaring, frail elders

(1) Alzheimer’s Foundation of America. Alzheimer’s Statistics. Accessed April 21, 2014.

Nov 122013

The new theme issue of JAMA (Journal of the American Medical Association) features a dozen opinion pieces that address critical issues in US health care,  including “Reliable and Sustainable Comprehensive Care for Frail Elderly People,” by Dr. Joanne Lynn, director of the Center for Elder Care and Advanced Illness [now the Program to Improve Eldercare] at Altarum.  In her “Viewpoint” essay, Lynn describes the MediCaring model for improving care for frail older adults by integrating health and social services, with monitoring and management by local communities.  Today, she joined JAMA editor-in-chief , Howard Bachner, M.D., Hamilton Moses III, M.D., Ezekiel Emanuel, M.D., and Ph.D., Joshua Sharfstein, M.D., for a  briefing at the National Press Club in Washington, D.C. (Dr. Lynn is among the audience in the cover art, included here.)

This article is article are available on the JAMA web site.

You can watch a 35-minute video of Joanne Lynn’s remarks via the YouTube video shown below. You also can download the PowerPoint presentation that she speaks about in the video.

You can also view a YouTube video of the entire press conference:

Lynn said, “We almost all get to grow old; it’s the terrific success of modern medicine.” Indeed, she noted that  those lucky enough to grow old—including millions of Boomers now on their way—face a health care system not designed or equipped to meet the essential needs of very old people for continuity of care, community-based services, access to nutrition and transportation, and help for family caregivers. Lynn writes that requiring a comprehensive, realistic assessment of each frail elderly person’s situation and development of a shared plan of care,  is the keystone of highly reliable, effective and affordable care. These care plans would inform and direct a person’s care,  and build the delivery system we need in advanced old age. Anchoring the effort in the communities where people live will make them more effective and will allow savings from more efficient medical care to be used to support social services, a plan that Dr. Lynn calls “MediCaring ACOs.”

Lynn concluded today’s remarks with a sense of urgency, and a call to action. “It’s not a hotshot pill anymore, it’s how people are going to live with these conditions,” she said. “We have about a decade to get it right.”

key words: Joanne Lynn, JAMA, MediCaring

Oct 172013

Nearly 300 people participated in a September Altarum Roundtable, “Advanced Old Age in America: What Can We Count On?” For now, it seems, very little – beyond the urgent need to improve the current fragmented and costly system, which fails to meet the diverse needs of older adults, their families, and their communities.  Panelists, who included congressional representatives, journalists, thought leaders, and community organizers, addressed the intertwined issues of medical services, long-term care and social supports, providing a deeper perspective on the current sorry state of affairs, and exploring new strategies to make our collective future a better place for aging people.

Susan Dentzer, a senior health policy advisor at the Robert Wood Johnson Foundation, moderated the three panels. The first, kicked-off by U.S. Senator Johnny Isakson (R-GA) and Elizabeth Falcone from the office of U.S. Senator Mark Warner (D-VA), included an in-depth look at The Care Planning Act of 2013. That bill would reimburse interdisciplinary teams to help Medicare and Medicaid beneficiaries map out options for living with advanced illness, and document a care plan geared to their own values and preferences and guide the course of their treatment. Other panelists included Shannon Brownlee, a writer who shared her family’s story of the fragmented care her mother received, and how such experiences have become the norm for many aging Americans.  Jennie Chin Hansen, CEO of the American Geriatrics Society, described how we might affect the forces that influence the current system. She suggested that we must address  “the space in between,” the years in late life that are often characterized by increasing dependency, disability, and frailty.

A second panel discussed economic trends, as well as national strategies that could help to create a framework for improving care in advanced old age. This session highlighted ideas by health economist Joseph Antos, from the American Enterprise Institute and John Rother of the National Coalition on Health Care. A third panel examined trends at the community level, with remarks from Mimi Toomey of the Administration for Community Living; Suzanne Burke of the Council on Aging of Southwestern Ohio; John Feather, CEO of Grantmakers in Aging; and Joanne Lynn, Director of the Center for Elder Care and Advanced Illness at Altarum Institute.

Roundtable cosponsors included Grantmakers In Aging, Grantmakers In Health, LeadingAge, National Alliance for Caregiving, National Coalition on Health Care, National Consumer Voice for Quality Long-Term Care, and OWL – The Voice of Midlife and Older Women.


key words: Altarum Institute, public policy, aging, elder care, Joanne Lynn