Jun 182019
Portrait of Anne Montgomery
Anne Montgomery

By Anne Montgomery

Time is growing short to make big changes to basic processes for service delivery to elders, who will soon constitute one-fifth of the U.S. population. Basically, we have a mismatch between the health care delivery system and what many older adults actually need.

Typically, older adults typically see multiple clinicians working in many settings – e.g., primary and specialty care, hospital care and home care — and communication between these providers tends to be inadequate. This in turn contributes to fragmented care that can be frustrating and costly. Medical services are often disconnected from the life goals and treatment preferences of a given individual, and his or her need for various supportive services are often not documented. Finally, although numerous smaller-scale initiatives have shown that much of the disability and frailty associated with aging can be effectively managed (and sometimes delayed or prevented), innovative models that prioritize these goals have not yet been widely implemented.

This suggests it’s a good moment for policymakers to consider piloting designated entities, perhaps called community-based health organizations (CBHOs), in order to organize provision of cost-effective supports across a population of high-risk, high-cost elders living in a given area or region. Broadly similar to a model developed by Joanne Lynn, MediCaring Communities, [https://medicaring.org/book-online/] CBHOs, operating as an interconnecting network, could be chartered to prevent and delay more costly inpatient and institutional care, working in partnership with local medical care providers. They would likely begin at a modest scale, forming networks in order to further develop business acumen, acquire information technology that is essential for interoperability, and develop collaborative relationships and contractual arrangements that over time can transition into more formal integrated care systems. As a distinguishing characteristic, CBHOs could measure and reinvest savings in improving community care systems.

Funnel stacked from Health System to CHBO

Shifting the Entry Point Average Cost/Day [Click to enlarge]

One intriguing graphic, created by Preferred Population Health Management and reprinted here with permission, provides an illustration in one community of how delivery system entry points and costs might be re-thought. For vulnerable populations, which includes many older adults, it may make sense to consider looking at community-based organizations (CBOs) or Area Agencies on Aging (AAAs), as another entry point to a more tightly coordinated care system that prioritizes cost-effective services that reduce the risk of needing higher-cost interventions.

Funnel stacked from CHBO to Health System

Changing the Entry Point to Health [Click to enlarge]

Using grant funding, CBHOs could be charged with standing up coordinated, synergistic delivery systems for older adults and individuals with disabilities across a service area. Collaborations could take various forms: partnerships between AAAs/CBOs and PACE organizations; with Federally Qualified Health Centers (FQHCs); with Rural Health Clinics (RHCs), and other possible combinations. CBHOs would be tasked with analyzing available data on the needs of all older adults and individuals with disabilities who live in the area, filling in with more complete data over time. They would then create a five-year plan for serving older adults in the area, with approval requiring consultation and sign-off by a local coalition representing providers, advocates, and individuals currently needing (and/or anticipating needing) services. Approved grant funding would flow to CBHOs, and states would be asked to assist in tracking CBHOs and their performance vis-à-vis standardized metrics, costs, and outcomes for individuals. At the expiration of the grant period, the federal government, in consultation with states and community stakeholders, would determine which CBHOs could become permanent.

There are several indications that policymakers are starting to consider such approaches. For example, a Senate draft of the Older Americans Act reauthorization, which is now circulating for comment, includes language stipulating that future OAA demonstration projects must address determinants of health; reduce health care expenditures, “preserve or enhance” quality of care to individuals, and prioritize initiatives that focus on caregiver support, multigenerational engagement and community-based partnerships.

There are other hopeful signs in work that is being led by the Center for Medicare and Medicaid Innovation (CMMI), which is teeing up a range of possible alternative payment models, and adaptations of existing programs to recognize and address social determinants of health in vulnerable populations. For example, as noted in our blog last month, [https://medicaring.org/2019/05/08/2019-cmmi-proposals/] CMMI has announced two groups of models, called Primary Care First and Direct Contracting. As part of the Direct Contracting Model track, CMMI published a Request for Information on how geographic contracting could work. Because they are typically limited to services that are available locally, older adults living with serious chronic illnesses and functional limitations and younger people with disabilities are populations that would be well-suited for a geographically-organized care model.

If local governments were allowed to be contractors, this could open up new opportunities for the Aging Network. To date, nearly all major federal innovation efforts have been geared toward large organizations working within the medical care system, but this could change. About half of AAAs are embedded in local governments, and AAAs and CBOs already understand how supportive services for older adults and other vulnerable populations can be efficiently delivered in very different types of communities. Moreover, as the nation’s primary publicly-funded network of community-based supportive services providers, staff are trained to organize and provide services in the home, and are therefore attuned to the life circumstances of individual elders.

In another encouraging development, CMS published an updated Scope of Work (SOW) in March for organizations applying to be Quality Improvement Organizations/Quality Innovation Networks (QIOs/QINs). Notably, this SOW instructs applicants to “coordinate with existing community-based efforts and reach community stakeholders to form community coalitions…[that] include the recruitment and engagement of providers across all care settings” — including those delivering community-based supportive services. QIN-QIOs will be required to use “a population based measurement strategy to show targeted improvement of beneficiaries that reside within specified ZIP codes” and to reach at least 414 community coalitions across the country. This means that QINs/QIOs will be actively supporting organizing of community stakeholders (providers, beneficiaries, caregivers and their families, emergency responders and more) in order to gather data that aims to improve care transitions and achieve specific reduction targets in high-cost inpatient hospital utilization.

By 2035, there will be 80 million older adults 65+ in the U.S., and the population age 85 and older will reach 12 million. And since many older adults have complex social needs and about one-third are living with a disability, this is an important time to try to shift the pattern of services further toward provision of home-based medical care and a more organized system of supportive, flexible, community-anchored services.

If we do too little now to deliberately boost the ability of the supportive services sector to innovate, it seems likely that unmet need for basic supports among many community-dwelling elders in the large boomer cohort will skyrocket. If this happens, health care costs will likely balloon. To help forward-thinking pioneers in this sector move forward faster, let’s hope that policymakers will give a green light to spurring development of collaborative, population-based care systems that are mission-driven to keep older adults at home and out of medical crisis for as long as possible. It’s a doable challenge, and the potential societal return on investment is large.

Jul 262016
MediCaring Communities cover

By Joanne Lynn

Nearly all Americans want a long life, and many of us will live into our 80’s and beyond. But as a society, we have avoided addressing the challenges of living well in the last years at a cost that our families and taxpayers can sustain. That’s about to change.

A new MediCaring Communities book from the Center for Elder Care and Advanced Illness, authored by Dr. Joanne Lynn, provides a comprehensive blueprint for re-engineering — in highly practical, doable terms — how to better organize service delivery and current publicly financed programs so that all Americans can count on living comfortably and meaningfully through the end of life. MediCaring Communities are deliberately designed to customize care around the priorities of elders and their families. The model also offers local organizations and governments a financial lifeline and a way to share in managing a care system so that it is as reliable and efficient as possible.

The MediCaring Communities model takes the best of “lessons learned” and “best practices” from the public literature and on-the-ground experience gained from working with frail elders and across many services systems. It addresses the unique needs of elders who need both medical care and long-term care through organizations that are either adapted or established de novo in order to deliver tailored geriatric and supportive services. These services are in turn modulated by each elder’s care plan – defined as a record of services that comport with an individual’s treatment preferences and quality of life goals. The substantial Medicare savings that result from lower utilization of high-cost services and improved, appropriate geriatric care, are then repurposed and reinvested in vital and underfunded homecare and related social supports, including home delivered meals, transportation, and training and respite for family caregivers.

Virtually everyone agrees this type of care is what they want for themselves and for their loved ones. We know exactly where we need to go, but how do we get there?

PACE Expansion

The Program of All-Inclusive care for the Elderly (PACE) provides one opportunity. PACE already has a solid reputation as a comprehensive program primarily for dually eligible beneficiaries who need medical care and long-term services and supports (LTSS). With the November 2015 passage of the PACE Innovation Act (P.L. 114-85), which brought innovations with PACE under the authority of the Center for Medicare and Medicaid Innovation (CMMI), the federal government now has streamlined authority to fund innovations in the PACE model. With a green light from CMMI, PACE programs will be able to test expansions in two key populations: (1) Medicare beneficiaries or “pre duals,” who need LTSS services, and (2) dually eligible beneficiaries who are not yet disabled enough to meet their state’s Medicaid definition of a nursing home level of care.
If PACE scales to take on these new populations, the program’s advisory board could readily evolve to become independent and reflect a broader community perspective on frail elders. In so doing, it could take on greater responsibility for monitoring and improving eldercare services across the community. Such PACE expansion programs could show how to anchor a comprehensive model of care for all similarly situated frail elders in the area, whether or not they are disabled enough to qualify for a Medicaid nursing home level of care.

ACOs and MCOs

Another mainstream Medicare model is an Accountable Care Organization or a managed care plan. Either could sponsor a MediCaring Community by accounting for frail elders in a defined geographic area separately from their overall business, and establishing an integrated clinical and LTSS delivery system in that community. The savings harvested from avoiding low-value, overutilized services would be calculated annually. A share would go to Medicare, but most would be retained for reinvestment in social and supportive services. Challenges associated with an adapted ACO model are that the usual ACO has little track record to build upon for constructing an independent board and for collaboration with LTSS providers, but other organizations in their communities would likely have strengths in these areas and be willing to collaborate. ACOs also have substantial barriers to establishing dominance in an area and their current quality metrics are not well matched to service needs of frail elders, so both of these would need work to overcome. ACOs also often have limited expertise in geriatric care, and would need coaching to build strong interdisciplinary teams quickly.

MCOs likewise could sponsor a MediCaring Community, in much the same way as ACOs. An MCO would collect per member per month premiums, and savings would be the profits in hand. The challenges in developing clinical expertise, care plans, connections with LTSS providers, and an independent board would be fairly similar to the ACO issues outlined above. MCOs also face the challenge of today’s “star rating” system for quality. Excellent frail elder care effectively means not complying with many standard quality metrics, including tight control of diabetes, hypertension, and screenings for cancer. Also, MCOs are now required to offer the same package to all beneficiaries, so an MCO could not offer a MediCaring Community package in one area and not in others without a federal waiver.
There are several potential paths forward, but much work will be needed to get there. However, there are steps you can take today to get America moving in the right direction. You can push your Congressional representatives and state officials to allow MediCaring Communities to proceed, and encourage consumer and professional organizations to get involved. Lastly, spread the word about the MediCaring Communities book — Read it, and write a review on Amazon! We also welcome your thoughts and feedback. Write us at [email protected] with suggestions for improvement.

Jun 202016

MediCaring Communities: Getting What We Want and Need in Frail Old Age at an Affordable Cost
Published June, 2016
194 pages, 6″ x 9″ (15.24 x 22.86 cm)

ISBN-10: 1481266918

List Price $9.95 at Amazon.com

Americans want a long life and most of us will get to live into our 80’s and beyond, but we have not squarely faced the challenges of living well in the last years of long lives. This book lays out a thoroughly pragmatic way to organize service delivery and financing so that Americans could count on living comfortably and meaningfully through the period of disability and illness that most will experience in the last years of life – all at a cost that families and taxpayers can sustain. MediCaring Communities offers to customize care around the priorities of elders and their families and to manage the local care system so it is reliable and efficient.

MediCaring Communities book cover

MediCaring Communities book (click cover to view on Amazon.com)

Three out of four of us will need long-term care. The period of needing someone’s help every day now lasts more than two years, on average. Most of us will not have saved enough to get through this part of life without financial help from family or government – indeed, we’ll spend almost half of our total lifetime healthcare expenditures in this last part of life, mostly on personal care that is not covered by Medicare. We have not yet required housing to be modified for living with disabilities or secured a ready supply of home-delivered food, and we certainly have not required medical care to focus on the patient and family priorities in order to enable the last years to be meaningful and comfortable. Family caregiving will be a crisis as families become smaller, more dispersed, older, and facing inadequate retirement income for the younger generation.

MediCaring Communities improve care by building care plans around the health needs and living situation of the elderly person and family, and especially from respecting their choices about priorities. The improvements in service delivery arise from integrating supportive services at home with customized medical care and installing local monitoring and management. The improvements in finance arise from harvesting savings from the current overuse of medical tests and treatments in this part of life. These come together in MediCaring Communities.

Strong evidence supports each component, but the real strength is in the combination, where savings support critical community-based services, communities build the necessary environment, and elders and their families craft their course with the help of interdisciplinary teams. This book lays it out, using expansion of PACE (The Program of All-Inclusive Care of the Elderly) as the test case. The book provides a strong and complete guide to serious reform, and just in time for the aging of the Boomers which will escalate the needs dramatically during the 2030’s. Now is the time to act.

You can read extracts online.

Advance Praise for MediCaring Communities

“For decades, Joanne Lynn’s has been the clearest, strongest, most soulful voice in America for modernizing the ways in which we care for frail elders. This essential book is her masterpiece. It offers a magisterial, evidence-based vision of that new care, and an entirely plausible pathway for reaching it. Facing a tsunami of aging, our nation simply cannot afford to ignore this counsel.”
—Donald M. Berwick, MD, President Emeritus and Senior Fellow, Institute for Healthcare Improvement, and former Administrator, Centers for Medicare & Medicaid Services.

“MediCaring Communities integrates good geriatrics and long-term services and supports, and building upon an expanded PACE program can be a tangible start. We should try this!”
—Jennie Chin Hansen, Lead in Developing PACE; Past President, AARP; and Past CEO of On Lok Senior Health Services and the American Geriatrics Society.

About Joanne Lynn

Joanne Lynn, MD, MA (Philosophy and Social Policy), MS (Quantitative Clinical Sciences), is Director of Altarum Institute’s Center for Elder Care and Advanced Illness. Dr. Lynn has served thousands of persons in their last years of life in home care, office practice, hospice care, and nursing homes. She was one of the first hospice physicians in the United States. Dr. Lynn has been a tenured professor at Dartmouth and George Washington University, a quality measurement expert on the staff at the Centers for Medicare & Medicaid Services, the Bureau Chief for Cancer and Chronic Disease in the public health office for Washington (DC), a senior researcher at RAND, and on the Institute for Healthcare Improvement’s quality improvement faculty. She is a member of the National Academy of Medicine, a Master of the American College of Physicians, a Fellow of the Hastings Institute and the American Geriatrics Society, and an author of more than 280 peer-reviewed publications, 80 books and chapters, and a dozen amicus briefs and publications for public commissions.

The reader can learn more about our work and give us advice and insights at MediCaring.org.

About Altarum Institute

Altarum Institute (Altarum.org) is a nonprofit research and consulting organization based in Ann Arbor, Michigan. Altarum integrates independent research and client-centered consulting to create comprehensive, systems-based solutions that improve health. One focus has been addressing the challenges of living with advanced illnesses and disabilities in old age through the Center for Elder Care and Advanced Illness. The dozen staff at the Center aim to help the United States achieve social arrangements that ensure that, when we must live with serious chronic illnesses associated with advancing age, we can count on living meaningfully and comfortably, at a sustainable cost to our families and society.

May 272014

Posted on behalf of Dr. Joanne Lynn
Patients and policy makers must require that clinicians communicate effectively with patients and families, not only to plan for death but also to develop a care plan that guides healthcare services through to end of life. Discussing clinical circumstances and their probable course, understanding the patient’s goals and priorities, and considering strategies to achieve them are essential.

Clinicians now work in such limited roles (only in the hospital or in the skilled nursing facility) that many are unaware of what the patient faces over time; teamwork across settings and computerized decision support are urgently needed. Some software programs offer customized treatment plan advice that can be shared between clinicians, patients and caregivers.

A good care plan must address expected situations requiring rapid decision making, such as appropriate response to cardiac arrest and death, and must deal with problematic treatment issues, such as hospitalization or artificial feeding. But care plans are not just for medical treatments: they honor personally meaningful relationships and activities, trade-offs between medical treatment and life enjoyment, and availability and skills of family and other caregivers.The care plan must move with the patient across settings and time, be revised as situations change and at planned intervals, and be evaluated for achievement of goals. Evaluations should go to clinicians involved in the plan, so their work can improve.

Ongoing communication between a well-informed physician and the patient about the situation, the family’s values, treatment preferences and care goals is crucial to a care plan. Yet many physicians are reluctant to initiate these discussions, citing a lack of skills, training or time. Or they believe that patients and families do not want or need to have these conversations, and they worry about triggering a sense of hopelessness.

Often, discussions do not happen, and the care plan consists merely of medications and treatments misaligned with patients’ goals. The required reporting for nursing homes (Minimum Data Set; MDS) and homecare (Outcome Assessment Information Set; OASIS) does not record care goals, the possible trajectory or even the overall plan. Near the end of life, physicians must work more closely together than ever to help patients and families manage expectations, make treatment decisions and match goals to care.

How can we achieve useful communication and reliable care planning? First, every form and document that patients must fill out or use when receiving healthcare should provide information about acquiring a basic care plan. Medicare’s measurement of physician quality could reflect how well they plan for care in chronic illness.

Second, we could ensure that a negotiated care plan will be documented when patients enter and leave the hospital or nursing home, upon hospice admission and every time the MDS or OASIS are filled out.Third, patients could demand information (and clinicians could learn to provide it) about the course of their illness, including ambiguities: a thoughtful discussion of what might improve and worsen, what the personal care needs may be and what matters most to the patient and family.

Finally, we could engineer strong decision support for clinicians and patients, including feedback from prior patients about how the care plan worked. We should raise our voices when care plans fall short. How it is that we have come to accept widespread false hope? Why have we tolerated clinicians making good incomes from unwanted tests and treatments? A bit of outrage would be a good thing.

Chronically ill patients and their families manage increasingly complex conditions. They deserve to know the medical situation, and clinicians need to know the social and personal information that shapes why patients and families want certain care strategies. Ongoing conversation and negotiation should engender a practical plan, tailored to the individual. That is the heart of reform for the last phase of life.

This article appeared in the November/December, 2011, issue of Aging Today, ASA’s bi-monthly newspaper covering issues in aging research, practice and policy nationwide.

key words: care plans, Medicaring book, Joanne Lynn

May 152014

The worlds of frailty, caregiving, and geriatrics tend to be a women’s world—men grow old, but women grow even older. Although more men are now acting as family caregivers, the high-touch, hands-on work continues to land mostly on women. The eldercare workforce teams with women, from direct care workers to geriatricians. For all that we aim to teach women to be more assertive in the workplace, in the main, we are socialized to be polite and quiet, and keep complaints to ourselves. When it comes to the paired worlds of frailty and aging, our silence leads to ongoing suffering.

People in the throes of taking care of others affected by the very complex situations frailty creates often do not have the time, energy, or insight to complain or object to what is happening: They are too busy with work-arounds, trying to make the system function for whatever family is currently struggling through it. Families themselves are often just shattered by the experience, and do not have the context or awareness to see that what they are experiencing is, in fact, what millions of others are—or will—be experiencing.

Too often, we are unwilling or unable to raise our voices when something goes wrong—no home health nurse can make it to the house, or medications interact with severe consequences, or a meal is not delivered—even if it goes terribly wrong. Anger and outrage make us uncomfortable. It’s a little like being in a restaurant and getting the wrong food, but not sending it back because you worry that a cook might spit in the dish. You eat something you dislike or didn’t order, and pretend that everything is okay. So too, in healthcare, people are often reluctant to speak up, fearing reprisals within and from the system, and worrying that they and their loved ones will suffer even worse care.

So, we know to act as if everything is okay, even when we can see that it is not. Or we act as if a problem is a rare event, and deny that it is, in fact, a routine occurrence. Such compliance with the way things operate keeps things operating, and so that’s what clients, patients and families, clinicians and system leaders do all the time –put up with awful situations, unreliable care and rampant errors.

In the last few years, we have seen an outpouring of blogs, articles, and books about end-of-life experiences—but these narratives, heart-stirring and gut-wrenching as they are, seldom connect individual experience with the policies and practices that shape what all of us face.

We need new habits. A book about habits—The Power of Habit: Why We Do What We Do in Life and Businessdescribes how the habits that moved Rosa Parks’ solitary action culminated in the Civil Rights Act. The author, Charles Duhigg, attributes this social movement to the strong and weak social ties Parks had with the greater Montgomery community. He writes:

 [The first mass movement of the modern civil rights era] began with Rosa Parks because she had a large, diverse, and connected set of friends—who, when she was arrested, reacted as friends naturally respond, by following the social habits of friendship and agreeing to show their support (p. 222).

What drove Parks’ singular action into incredible social action grew from a social habit we all learned in junior high—peer pressure. Peer pressure, the author says, builds on the power of “weak ties” to pull people in, to adapt new habits, and to create change. Anyone who has ever tried to persuade a middle schooler not to try cigarettes will know the incredible force peer pressure can exert.

Community Mobilization

 Without knowing it, Rosa Parks and her social network actually implemented a theory of mobilization pioneered by Harvard professor Marshall Ganz: the I-Us-Now theory of community organizing. At its most basic level, that theory relies on the power of storytelling to engage people in a community, to give them insight into an organizer’s motivation and purpose, and to help them find a way that they, too, can get involved.

In short, Parks acted on her story: She sat in the front of the bus. Later, she said, “The only tired I was, I was tired of giving in.”

Her story became the springboard to major social and civic change.

Each person seeking to change care for frail elders can apply a similar model, starting with the story of “I”—your experience, and why it matters, how it led you to become involved in an issue. Why are you motivated to make a difference in policies affecting caregiving? Have you been a caregiver in a difficult situation? How did you make it through? A story of “I” gives organizers some legitimacy to speak to, for, and with others.

Next, leaders must tell the “story of us”— connecting your individual story to a broader narrative of how others are experiencing the same issue. Once the community realizes its shared concern, it needs to have a convincing “story of now”—why is caregiving such an urgent issue? What disasters await if we do not act? Why is our current approach failing? How can we improve it?

We need to step up and speak up. We need to see how what we experience each and every day in someone’s life—ours or that of someone we love or serve—is a universal experience. We need public policies that address the barriers, challenges, and outright inequities in caregiving.

What can YOU do? A few simple things:

  1. Go online, Google “family caregiving,” and comment (if the site allows) on a few of the many articles you find, or email its author or affiliated organizations.
  2. Find a caregiving or aging-related story in the Sunday paper, and write a letter to the editor. These seem to run daily, and are easy enough to find.
  3. Find out how to contact your local government representative—and then write an email about caregiving, and your desire to make it better. Even better and more effective, if you can, visit your elected officials at all levels of government. And be specific in your ask: ask that respite care be covered, or that caregivers be identified and made an explicit part of the patient’s plan before hospital or nursing home discharge.
  4. If you are a staff member or leader, take notice of problems, realize that they are likely not one-offs, and correct them. Instead of trying to make things right by smoothing them over and patching it together, complain. Identify root causes. Propose solutions. If you are a patient or family member, ind out where and how and when to file a complaint. The process can be time-consuming and daunting, but it is often worth the effort. And although it may not spare your loved one further suffering, it can help prevent it for others in the future.

If you take any of these steps, please be sure to let us know. We’d like to hear more from others about what they are experiencing—and even more, what they are doing to improve the situation.

key words: MediCaring book, Joanne Lynn, Janice Lynch Schuster, Charles Duhigg, social change, grassroots, Marshall Ganz

May 142014

The MediCaring team of healthcare providers must reflect and address the array of medical and social services frail elders need. However one labels the team– multidisciplinary, interdisciplinary or trans-disciplinary—its key focus must be to deliver an integrative approach based on a care plan developed in collaboration and with the elder and her family. Such a team is best equipped to manage the long-term needs that evolve as elders shift across settings and functional status.

The Care team can build upon one another’s expertise to achieve the common, shared goals articulated through a shared decision-making process driven by the elder in the development of the care plan. This approach operationalizes a basic tenet of MediCaring: that each frail elder should have reliable, comprehensive, and continuous medical and supportive services. Such a strategy builds on an ongoing, personal relationship with a primary care provider skilled in geriatric care. The entire structure builds on trust that is established between clinicians and elders, and extends to the entire team of caregivers, from home health aides to occupational therapists to volunteers.

Such a team—which functions well and operates in concert–can then provide the range of skills and services frail elders require, and offer these clients a reliable point of contact and entry to the system. In developing strong, trusting personal relationships among key team members, the elder and the family/friend caregivers, the structure offers the potential for enduring and effective care.

Core tem members should include, at the very least, a physician/nurse practitioner, nurse and social worker. Other direct providers such as physical therapists, respiratory therapists, speech pathologists, physician specialists, nutritionists, pharmacists, dentists, home health aides, lawyers, clergy and others can be included on the team as needed. Depending on the elder’s specific need, any member of this core team can respond to the elder’s needs for care, and coordinate treatment and services.

MediCaring builds on and ensures primary care for elders whose needs are complex and challenging. Such care is not the primary care we hear about in discourse that has become so common: a physician who provides routine prevention and screening, offers education about chronic disease self-care, and coordinates services by specialists. Rather, MediCaring is primary care on steroids – necessitating a high-functioning team that can deal with very complicated puzzles of needs and responses.

Core team members would hold biweekly meetings to discuss elders in their care, and review and update plans of care. Care would be delivered accordingly. During each visit with an elder, the visiting provider would conduct a medication review and pain and symptom assessment, as well as to assure that the full range of biopsychosocial needs specified in the care plan were being met.

MediCaring uses geriatric principles and palliative care standards and approaches, but is not limited to the medical aspects of service to the frail elderly population. Indeed, a major part of the endeavor is to shift resources from wasteful and unnecessary medical care toward greatly needed social supports that are mostly provided outside of the medical profession, and even outside of the nursing profession. MediCaring Community teams aim to be all-inclusive in order to meet the unique care needs of frail elders.

key words: Joanne Lynn, Janice Lynch Schuster, Judy Peres, MediCaring book, interdisiplinary team, multidisciplinary team

May 072014

As millions of Americans reach old age, millions will experience the frailty that accompanies that time phase of life. And that price, really, can be a sticker shock when writ large over the lives of millions.

People over the age of 65 account for a fair amount of the nation’s healthcare costs. For example, 13% of the population was over the age of 65 in 2002, and yet this group represented 36% of healthcare costs that year—spending an average of $11,089 per year in costs, compared to $3,352 spent by working age adults. (AHRQ, 2006) People over the age of 80 represent even higher costs in the healthcare system: although they were 3% of the population that year, they accounted for 14% of the 5% of the top healthcare spenders. (AHRQ, 2006) Many of these costs are the result of the multiple chronic health conditions that accompany old age, and that are expensive to manage. Expenses for people with one chronic condition were twice as great as for those without any chronic conditions. Spending for those with five or more chronic conditions was about 14 times greater than spending for those without any chronic conditions. (AHRQ, 2006) Persons who have five or more conditions also have high hospital expenditures.

At the same time as people experience an increased rate of disability, they also contend with increasing healthcare costs and burdens. Those with severe, advanced chronic conditions, such as Alzheimer’s and other dementias, heart disease, or diabetes, are likely to experience real challenges in self-care, the day-to-day activities that enable people to live independently. As a result, in addition to burgeoning healthcare costs, these people face the collateral costs of disability, such as adding wheelchair ramps to the home, updating the bathtub to prevent falls, or purchasing a special chair for help with sitting and standing. Although Medicare/ Medicaid cover some of these costs, the majority are paid out of pocket.

These out-of-pocket expenses are not trivial, and can have a significant burden on families. How does one cover all the health care costs associated with multiple chronic illnesses? How does one afford to upgrade a home to make it safe for an aging loved one? How do people coordinate necessary outings for an elderly loved one who cannot drive? How do you afford a home health aid or nurse to help someone with dementia? For now, families and loved ones cobble it together, paying for services that bring in food or home aides or occasional transportation.

Families also bear the costs of caregiving. Almost 30% of American adults provide some level of care to a family member. By some estimates, that caregiving is work about $450 billion dollars in unpaid contributions. These caregivers, the majority of whom are working women, also shoulder the cost of lost wages and benefits, as well as social isolation, and negative health and emotional consequences. Caregiving is particularly difficult for those providing full-time, daily care to adults who have multiple advanced chronic conditions, especially dementia or Alzheimer’s disease.

Living to be quite old has its rewards and happiness. But it also has important challenges for individuals, families, and communities. MediCaring builds on a person-centered approach to care through a community-oriented response to care, and offers one possibility for living to and through that time with meaning, dignity, and safety.


The High Concentration of U.S. Health Care Expenditures: Research in Action, Issue 19. June 2006. Agency for Healthcare Research and Quality, Rockville, MD. http://www.ahrq.gov/research/findings/factsheets/costs/expriach/index.html

Key words: Joanne Lynn, Dora Hunter, Janice Lynch Schuster, MediCaring book, eldercare, healthcare costs

May 072014

Health planning has been a long-running theme in American health policy, dating back to the 1940s. Seen by its advocates as a movement, such planning aimed to make widely available coordinated health facilities and services, especially hospitals. It also aimed to foster the orderly and efficient development of hospitals in order to meet each community’s needs, while avoiding duplication of services and facilities and oversupply. (Melhado, 2006)

The 1946 Hill-Burton Hospital Construction Act was the first federal effort to promote health planning. It mandated that states assess the need for hospitals and establish statewide priorities for the allocation of funds for new hospitals. Hospitals receiving Hill-Burton funds were required to provide charity care to the medically indigent. Amendments to the Hill-Burton Act in 1962 mandated the formation of state and regional health planning agencies supported by the federal government. A voluntary not-for-profit network of regional health planning agencies in major metropolitan areas conducted needs analyses and advised states on construction priorities in their areas.

The 1974 National Health Planning and Resources Development Act required states to manage the growth of hospitals and other healthcare facilities. The law reflected the need to control inflationary increases in the cost of healthcare. To this end, it created the most extensive system of community health planning agencies the nation has ever had, and followed a template of one Health Systems Agency (HAS) for every million people. An array of agencies emerged with different names but similar functions: State Health Planning and Development Agencies (SHPDAs), Statewide Health Coordinating Councils (SHCCs), and others. These agencies were designed to implement the Certificate of Need (CON) programs through which hospitals and other facilities seeking to make capital outlays would first have to receive state approval. The Older Americans Act directed the State Units on Aging (SUAs) and the Area Agencies on Aging (AAAs) to relate their planning efforts to those led by the HSAs.

Congress intended for this elaborate planning structure to remedy perceived deficiencies in the performance of the healthcare industry as it then existed. The Act aimed to address problems that arose in three broad categories:

  • The failure of marketplace forces to produce efficient investment in facilities
  • The need to minimize the costs of health care
  • The uneven and fragmented distribution of healthcare facilities.

Several years later, however, studies evaluating these new efforts found that health planning had proven to be ineffective in controlling capital expenditures. In addition, advocates for greater competition in the health sector argued that, where health planning was effective, it actually raised costs by protecting the franchises of unneeded and inefficient hospitals. (Bice, 1990)

Some of the failure in health planning has been attributed to the lack of assurance of resources to meet communities’ needs. In addition, consumers and providers came to the process with different levels of knowledge and understanding, and their unwillingness to compromise. In the end, the HSAs failed to control the expansion of the system. Nonetheless, although Congress repealed the federal Health Planning law in 1986, many states continue to operate CON programs. (National Conference of State Legislators)

We continue to face the vexing challenges lawmakers sought to address in the early 70s—and, perhaps, thanks to new technologies for monitoring, assessing, and evaluating programs, we have new management tools to support contemporary efforts. We believe that MediCaring communities, which would rely on local authority and monitoring to address needs of a community’s elders, and align resources accordingly, are a new way to meet old challenges.

It still seems unlikely that individuals and institutions now thriving economically in the chaos of a top-heavy, over-medicalized system will simply sign up to try something new—especially something that shifts profits and funding mechanisms to balance medical treatment and services with social services and supports. The public—and frail elders and their families—must constantly insist on better use of public funds.

The system will not correct itself. Our current Wild West focuses on developing and deploying services to match business opportunities. We need to re-arrange that system so that there are incentives for having just-about-the-right service supply for all services—and an efficient mechanism to coordinate them. New administrative structures would be necessary to make such a system work—but the room to build such a system exists; we now need the will.

The reality is that we have substantial evidence of unmet need—and a system in which overtreatment remains the order of the day. This combination leads to substantial suffering and unnecessary economic burdens for individuals and for society. We must develop a more thoughtful and deliberate effort that regularizes processes, establishes more efficient standard practices, and shifts services toward effective and essential care. Such an approach might lead to improved performance, better management, and better care—a riff on the Triple Aim.

The structure of such a management structure is open to dialogue and testing. Some communities may find that it can begin to change simply by compiling existing data on its frail elders, particularly their service utilization and unmet needs; comparing that data with past performance, or with performance levels in other regions; and deliberately opting to shift the balance of overuse and undersupply.

Other communities may need a different approach. Some, for example, might launch stakeholder coalitions with sufficient staff to manage data required to stand up a new system. Others may find that substantial funding and authority are essential. In many instances, pilot programs, start-up funds for designing new models of services delivery, altered financial incentives and penalties, and other controls may be necessary.

But a first step for most might be the rebirth of the HSA, only this time, with a clear focus on and commitment to eldercare. We’ve tried many names for such a body, from ElderBoard to local monitoring authority. Whatever the name, the task will be the same: A revolution in how we design, deliver, manage, and fund services for frail elders.


Bice, T. Health Planning and Regulation Effects on Hospital Costs. Annual Review of Public Health (1980), no. 1, pp. 137-61. 6.

Melhado EM. Health Planning in the United States the Decline of Public-interest Policymaking. Milbank Q. Jun 2006; 84(2): 359–440. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2690168/

National Conference of State Legislatures http://www.ncsl.org/research/health/con-certificate-of-need-state-laws.aspx, accessed online 4/13/14.

key words: MediCaring book, Joanne Lynn, Janice Lynch Schuster, Judy Peres, health systems agency, elder board

May 012014

In 1980, American business discovered W. Edwards Deming and his quality improvement work in the Japanese automotive industry. In fact, that work helped to launch the application of Total Quality Management (TQM) strategies in the American healthcare system.In his final book, The New Economics, Deming outlined a way of seeing, a lens for looking at work and at life. He called this lens The System of Profound Knowledge (SoPK), and using it was to enable improvement in the quality of every facet of business life, including the quality of management, as well as the quality of our interactions with one another and with the environment.

To learn more about SoPK, one can find much detail on a website devoted to Deming’s life and work. And the video narrated by Ian Bradbury provides a good overview, too.

Deming considers the whole of a system. He wrote, “A system consists of components. Any company, any industry, consists of components that are different activities. All the components of the system must contribute to the system, not exist for their individual gains.”

Deming’s work has influenced more than twenty years of healthcare quality improvement efforts; healthcare system leaders have embraced an array of methods and techniques, including rapid-cycle quality improvement, Lean, and others. In general, successful quality improvement efforts require five essential elements:

  • Foster and sustain a culture of change and safety.
  • Develop and clarify an understanding of the problem.
  • Engage key stakeholders.
  • Test change strategies.
  • Conduct continuous monitoring of performance and reporting of findings to sustain the change.

These improvement essentials are a foundation upon which MediCaring communities can begin to improve care for frail elders, in part by addressing the very systems in which they live: Their communities. As Deming notes, systems are everything, in business and in communities. By focusing on local improvements in care for frail elders, MediCaring considers the environments in which frail elders live: in communities, tied to local norms, traditions, standards, resources, and so on. Indeed, frail elders are often tied to geography and local community: They get meals at senior centers or from Meals-on-Wheels, they do not have the resources or the reserves to travel far and search for something better.

Local leadership is able to respond to local needs, priorities, and preferences. It can assess what its residents need, what it can offer, and how to allocate resources. Local leadership in the form of a local board or authority can provide the five elements essential to improved quality in community care of frail elders. Such a board—an MediCaring Board, an ElderBoard—would provide the locus for assessing, monitoring, and managing services.

How might this begin to work? In a community of 50,000 people, it is reasonable to expect that about 500 frail elders need services at any point in time. Imagine how different frail elders’ lives would be if each one had a comprehensive, longitudinal care plan developed in concert with a multidisciplinary MediCaring team. That team would have ready access to those plans, and a commitment to ensuring that priorities were known and addressed. That team would also track outcomes, and shift course to correct gaps.

Such an approach would be a real advance in delivering reliability, quality, and efficiency in care. Those care plans could be used to evaluate a community’s overall services system, both in terms of quantity and quality. Planners and providers could readily see, for example, instances in which a particular service was oversupplied and overutilized, when a less costly service could have met the need. Consider, for instance, that our community has so many nursing home beds that it is simply routine and expedient to house people in those beds, and not in the community.

Aggregating care plans and using them in system planning would allow for ongoing monitoring that could in turn enable system managers to more readily address variations and anomalies that affect utilization and outcomes. For example, perhaps the 50 people who had a major fall with injury last year had widely varying response, ranging from some who received many tests and procedures followed by rapid institutionalization, to those who got short-term treatment, focused assessment including in-home evaluation, and modifications and supports in the home. If the more streamlined treatment group were found to have equal or better outcomes, and was in other ways similar to the other cohort, perhaps clinicians responsible would decide to change their practice patterns.

Taking a broader view, we could begin to plan for greater efficiencies. Consider another example. Let’s assume that a dozen people in one apartment building need home care aides. Rather than sending in a dozen workers for morning activities and another dozen for evening, with a 3-hour minimum work requirement for each, perhaps we could move a few around within a small area – say a few square blocks or miles — and cover all service needs with half as many aides, who would also know with greater certainty how many hours they would be working. It is also possible with a more efficient system to pay these workers higher wages, and concentrate their time on providing services, rather than driving or commuting between far-flung homes.

Periodic review of aggregated care plans would also make it possible to rapidly identify and investigate ineffective services that are being recommended. For example, many persons with a vertebral fracture do not need multiple scans and procedures. Likewise, an elder with attentive family in the area is unlikely to need grocery delivery.

However, there is no such planning, monitoring and rational management of the services for frail elders, or for other vulnerable populations. We are thoroughly inattentive to the per-person costs and quality of the care we provide across all relevant settings, combined with a magical belief that disparate service providers will somehow end up right-sizing their services and optimizing their quality. This is obviously implausible. Without a way to look across the care system for a community, hospitals maximize hospital revenues, nursing homes optimize nursing home investments, nutrition providers optimize grants and budgets for their services, and so on. There is no requirement that these myriad services somehow end up doing “just right” by the population, and it is not at all likely that they ever will.

MediCaring aims to change this status quo. And developing a local authority to start the change is a key step in the right direction.


W. Edwards Demming. Interview in Automobile Magazine, Ann Arbor, Michigan, June 1991

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

Apr 292014

As much  as we tell ourselves and each other that 80 is the new 60, or 60 is the new 40, we are kidding ourselves, and setting up a future in which the needs of very frail elders are unseen, misunderstood, and unmet. Popular culture and its pressure to be forever young  ignores the reality of aging: That those of us lucky to survive chronic conditions, such as cancer and heart disease, will just grow very old. There are benefits to living—look how many of us prefer to do just that—but there are challenges to aging. We will change: physically, mentally, emotionally and spiritually. Our circumstances will change: independence may give way to dependence, our homes may give way to nursing homes, our working income may give way to financial uncertainty.  Very frail elders, like very young children, have unique and particular circumstances that require attention and care from family and friends, and from communities and government. To understand these needs,  it helps to first understand who frail elders are—or who we mean when we speak of them.

The last century heralded major changes in American health, and in public health. These, in turn, have led to longer lives;  the average US life expectancy for a child born in 2010 was 78.7 years, a thirty-year gain from 1900.  There are simply millions more of us! alive.  Since 1900 the number of Americans over 65 has increased from 3.1 to 41.4 million persons. The increase among the older population will accelerate as the Baby Boomer generation ages. In fact, the Baby Boomers are estimated to reach 80 million persons by 2040.

It is not just that people are aging, but that they are aging into very long lives.  In 2011, the 75-84 group (12.8 million) was 16 times larger and the over 85 group (5 million) was 40 times larger than their populations than at the turn of the 20th century. Those over 85 is projected to triple from 5.7 million in 2011 to 14.1 million in 2040. This is an unprecedented rate of growth for those over 65.

The very old face challenges of inhabiting such old bodies.  More than half of older adults have three or more chronic diseases. Alzheimer’s and related dementias also plays a role in increasing illness and disability. Over 5 million persons over the age of 65 report having Alzheimer’s or a related dementia disease.  By 2050, the number of people age 65 and older with Alzheimer’s disease will nearly triple to 16 million. Currently, nearly one in three deaths are attributable to Alzheimer’s or dementia-related diseases, and Alzheimer’s is the sixth leading cause of death.

People who are frail and have multiple chronic conditions experience problems in completing tasks of daily living, and almost one third of adults over 65 have problems with tasks such as eating, dressing or bathing.  Increasing age comes with increasing struggles;  almost half of those over 85 report difficulty walking and a quarter report difficulty bathing and showering.

We say that these people are frail, but what is frailty and why does it matter?  Geriatricians define frailty as “a clinical syndrome in which three or more of the following criteria were present: unintentional weight loss (10 lbs in past year), self-reported exhaustion, weakness (grip strength), slow walking speed, and low physical activity.” (Fried et al, 2001). A person with none of the indicators is robust, a person with 1 or 2 indicators is pre-frail, and a person with 3 or more indicators is frail.

As we develop and test  MediCaring, it is important to have a standard way to identify frail elders, and to coordinate and deliver the array of services they need. Doing so is imperative: Millions of Americans will now experience an extended period of frailty. We have unprecedented change on the horizon—and an urgent need to respond to the challenges change brings.


LP Fried et al. J Gerontol A Biol Sci Med Sci(2001) 56 (3):M146-M157. doi:10.1093/gerona/ 56.3.M146

key words: MediCaring book, Joanne Lynn, Janice Lynch Schuster, aging, frailty

[1] Life expectancy at birth, at age 65, and at age 75, by sex, race, and Hispanic origin: United States, selected years 1900–2010. Centers for Disease Control and Prevention. http://www.cdc.gov/nchs/data/hus/hus12.pdf#018