Oct 182018
Portrait of Dr. Joanne Lynn
Dr. Joanne Lynn, MD

by Joanne Lynn

Our aging society is a mountain to be moved – a large collective challenge we have to tackle together. Problem is, right now we’re using shovels when bulldozers would hardly do the job.

The mountain is reforming how eldercare is delivered and funded. We’ve allowed so many forces to converge over the years in a payment-driven, provider-centric framework, that we’ve managed to create a grim future for the last phase of aging. Most of us will have at least a couple years of self-care disability in the last years of life, no matter how healthy our life styles may become. While “healthy aging” is a terrific idea, it is one that eventually fails in most lives, simply because some form of frailty will still disable us, for a long time, and presage death.

Families are smaller, older, and more dispersed – there is often simply no one able to provide free care at home. Retirees have ever lower savings and insurance, overwhelmingly too little to pay for an expectable range of personal care. Medicaid is stretching state budgets and many more are set to spend down to eligibility. Communities have no entity actively monitoring and managing the performance of their unplanned and poorly coordinated eldercare arrangements. Serious illnesses and disability in old age is the dominant cause of family impoverishment and bankruptcy. Paying current per capita costs by raising taxes is not plausible by the mid-2030s [National Research Council. 2012. Aging and the Macroeconomy: Long-Term Implications of an Older Population. Washington, DC: The National Academies Press. https://doi.org/10.17226/13465] – we will find ourselves balancing crippling the economy with abandoning dependent patients. Being able to support an expansion of public services and supports to accommodate more elders in need depends upon a thriving economy, and that depends upon highly productive young adults. Yet we now have half of children born into poverty and we tolerate high rates of young adults being unprepared for productive work.

Many issues compete for our attention. Why bother with dealing with old people? Two pragmatic reasons: old people and their children vote, a fact that makes it unlikely that elder care issues will be abandoned; and all of us will eventually join that cohort, a fact that makes it everyone’s issue. Furthermore, we really are part of a community, and we really won’t be able to ignore a retired school teacher’s homelessness, the gnawing hunger and painful isolation of a former jazz musician. Our better natures will require making basic needs available on a reliable basis.

In 2016, our team at Altarum worked with other national partners to push for caregiver planks in state and national party platforms — 11 states included a plank as well as having the issues show up for the first time in both Democratic and Republican national platforms. [Scribner, B. et al. (2017). Creating A Nationwide Nonpartisan Initiative for Family Caregivers in Political Party Platforms. J Am Geriatr Soc, 65: 1126-1131. doi:10.1111/jgs.14814] A key finding of voter polling work in this project was that voters of all political persuasions are energized and passionate equally about the needs of caregivers and supports that ought to be made available to families.

But how? The costs look to be overwhelming. The effects upon the economy and the opportunities for younger persons look to be disastrous. It is so much easier to duck and run – answer to the immediate issue but make no fundamental changes. There’s a better way.
Our arrangements for medical care assumed that people are mostly healthy and on their own, and from time to time they need medical care to return them to health. In frail old age, the question is not mostly to “fix it” but to “live well with it.” In this setting, continuity, care planning, and caregiver support matter – three elements that are mostly missing in our current health care. We need to dramatically reorganize health care to require these elements as essential in elder care.

What happens to support frail elders depends critically upon the arrangements for support in their geographic community. Is disability-adapted housing available and affordable? Can you get appealing and affordable home-delivered food? Is there an adequate workforce skilled in handling personal care at home, even for persons with dementia and persons who are difficult to serve? Do the dominant employers provide flexibility for family and volunteer caregivers? Are there volunteers organized to fill in most “instrumental activities of daily living,” such as minor home repairs and delivering food? Perhaps most important, is there an entity with the responsibility to address these issues – to monitor performance in that community and take steps to improve it?

With many communities doing this, communities would be able to benchmark performance and manage the arrangements in their community. Lots of independent businesses would still thrive, but collective action would also be possible and practices that distort service availability or quality could be constrained. Altarum developed a Financial Forecasting Tool [https://medicaring.org/2018/07/24/mcforecasting/] that can help communities understand the resources they already have — medical and health services, social services, community volunteer organizations, and others — and quantify the possible savings a reformed system of eldercare can produce. There is a lot of money being spent in the period when elderly persons live with serious disabilities, but it is not being used in planned, efficient, person-centered ways.

This is a more fundamental reform than just moving medical care to the home or providing coordinated post-hospital care, or whatever combination of currently “evidence-based” improvements you prefer. This is making some part of elder care into a public concern, managed at the community level. It is not just for dual-eligible elders, it is not just for persons who run up high bills, and it is not just for persons with particular diagnoses. This reform is for us all. We’ve called it MediCaring Communities. [https://medicaring.org/book-online/]

We must work on financing and service delivery at the same time. If we started now to build private savings for long-term care (through savings accounts or insurance), we’d have capital to stimulate the economy as well as less demand for public funding in fifteen years. Having a federal back-stop on long term care costs would create a vibrant marketplace for long-term care insurance. Professionalizing assistance with personal and supportive care would create better paying jobs in the care sector and these professional caregivers would be able to build a new middle class around eldercare professions, thus boosting, rather than draining, local tax bases. Planning for the whole populace also requires substantial reinvestment in ensuring that our children come into adulthood as highly productive citizens.

This is our opportunity time. If we buckle down and enable substantial innovation in some counties and cities, we’d learn what’s possible and other counties and cities would follow suit. We urgently need an era of profound and far-reaching innovation and learning. What can you do make it possible to overthrow the status quo? Be in touch with one another and with us – let’s dramatically increase the pace of improvement and build an elder care system that is highly reliable and efficient and build it in time to accommodate the rising numbers of disabled and frail elders.

Mar 282018

By Les Morgan

The following reports were produced as deliverables for our project “Aggregating Care Plans to Manage Supportive Care Services for Elders” (Joanne Lynn, M.D., Principal Investigator).This project is funded by the Gordon and Betty Moore Foundation through Grant GBMF5662 to Altarum Institute. Dr. Lynn will provide a more detailed report on the project as a whole in a following blog post.

We are releasing these reports now particularly to help some of the community groups we are working with on data projects. The first three reports cover technical details of how care plans can be structured, stored, and shared in electronic information systems. Those three reports taken together provide useful information that can be used by community groups seeking insight into eldercare through the use of data aggregation methods.

Communities that are seeking to improve eldercare need trustworthy data to use in setting priorities and in monitoring improvements. One appealing approach is to aggregate existing health-related records and analyze the data for key indicators of how their local system is functioning. However, for most of the communities we have worked with, on a practical level the aggregation of this sort of data seems to be very difficult or impossible, given important concerns over privacy and the serious penalties associated with breaches of privacy obligations. Our hope is that these reports will help overcome some of the obstacles that stand in the way of improving care for some of our most vulnerable citizens.

To read the full reports in PDF format, click on the report name you wish to view.

Report 1

Interim Report on the Variety and Merits of Care Plan Templates and Regulations in Use, Including Implications for Information Technology [PDF]

Joanne Lynn and Les Morgan. October 20, 2017

Effective multidisciplinary clinical teams know their patients but document only a skeletal summary of the case. That summary generally includes diagnoses, basics of the living situation, medications, treatments, and supportive services in use or recommended. The various biases, omissions, and lack of long-term perspectives in the clinical documentation are substantial, as summarized in the report.

Our scan of forms and data formats for care plan documentation shows a wide variety of approaches. All made heavy use of free-text narrative elements. The most complete and up-to-date set of care plan records that we have seen was done longhand on a typewritten sheet by a single care coordinator responsible for over one hundred high-need patients seen at one hospital.

The electronic record systems that we reviewed used only to carry the minimal information needed for a C-CDA transmission mostly limited to immediate and near-term needs. None of the electronic records we examined were being used to record the caregivers with their roles, the prognosis, or an advance directive. None used the existing FHIR data format standards for complete care plans.

Report 2

Interim Report Summarizing Data Aggregation Methods in Use To Date and Their Strengths and Weaknesses [PDF]

Les Morgan. October 20, 2017

This is a high-level Information Technology (IT) architectural review discussing major variations in system design approaches for care plan data aggregation, based on a content analysis of interviews with vendors and some key users. A series of architectural diagrams is included to classify approaches. Our interviews with technology vendors are ongoing, and this preliminary summary of methods will evolve as we see more examples of working systems.

Report 3

Aggregating Patient-Level Data: Regulatory, Ethical, and Privacy Issues for Communities [PDF]

Les Morgan and Joanne Lynn. March 2018

This report gives an overview and assessment of regulatory, ethical, and privacy issues specifically related to the use of aggregated care plan and related health data for analytical use across defined geographical catchment areas. The literature covering regulation and privacy of healthcare data is extensive and often contentious. Our review here highlights some major sources for authoritative guidance, then moves on to the specific situation of using aggregated and de-identified data sets for geographic analysis. Regulations that are specific to requirements for maintaining care plans were covered in our prior project report (Interim Report on the Variety and Merits of Care Plan Templates and Regulations in Use, Including Implications for Information Technology) and are not repeated in this report.

A key conclusion of our review is that using aggregated and de-identified data on a broad geographic basis is probably not restricted as much as many of our community stakeholders and leaders think. Some uses of such data are specifically exempted from key privacy laws when appropriate protections are in place. Some regional health care payer systems and Health Information Exchanges (HIEs) have mechanisms to enable such research now, using very large data sets they have already compiled. This means that it is feasible to carry out pilot projects to demonstrate practical methods for data aggregation and analysis for a community or region in many parts of the United States.

Report 4

Benchmarking the Eldercare Workforce: A Community Focus [PDF]

Meghan Hendricksen and Joanne Lynn. February 2018

The overall purpose of this report is to provide an initial, alpha-version, benchmark of the workforce within geographic communities to use for illuminating comparisons with their own workforce estimates.

This baseline benchmark will provide a tool for consideration, and then feedback for improving the tool. In essence, we are creating the start of a learning system for optimizing the workforce in a geographic community. Once the estimates and ranges become substantiated in multiple communities and improvement activities, the maturing benchmarks will provide a trustworthy source of guidance for communities, where evidence is currently lacking, on what the priority needs are for the workforce that is serving older adults living in the community and also will provide a tool for monitoring improvements. Measuring the local workforce capacity also helps engaged community leaders to envision their whole system and its products, even though that “system” is owned and operated by many different entities that are not necessarily coordinated.

Jul 052016

New York, New York, July 5, 2016—A new financial simulation for a novel model of care, called MediCaring Communities, has shown significant Medicare savings for frail older adults who need both medical care and nonmedical support services.

Medicare savings ranged from $269-$537 dollars per person per month, depending on the community, its past patterns, and the pace of change anticipated. The four communities in the simulation were Akron, OH, Milwaukie, OR, Queens, NY, and Williamsburg, VA.

The U.S. could provide much better care for disabled and sick elderly people without exceeding what we now spend, the study shows. The team estimated enrollment and effectiveness of improvements, using local experience and research data.

These findings, from Altarum Institute’s Center for Elder Care and Advanced Illness (CECAI) [now Program to improve Eldercare] in partnership with Dobson DaVanzo & Associates, LLC, were published today in The Milbank Quarterly.

In the model, medical services were reconfigured to improve the experience of frailty in old age, starting with a comprehensive, elder-driven care plan constructed to reflect each older adult’s specific situation, prognosis, and personal priorities. Added to the mix were improvements to ensure that supportive long-term care services were reliable and readily available.

The financial simulation included Medicare beneficiaries with dependencies in two activities of daily living or cognitive impairment necessitating constant attendance.

“This model will be successful if just some of these savings from high-cost medical services are invested in nonmedical in-home support,” said Joanne Lynn, MD, CECAI director. “It should be easier for a disabled elderly person to get home-delivered meals, or for a family caregiver to get a few days relief, than it is for a doctor to prescribe a $10,000 pill. At present, we have our priorities wrong.”

“Programs already exist that could make this happen if CMS (Centers for Medicare & Medicaid Services) allowed it. Accountable Care Organizations and the Program of All-Inclusive Care for the Elderly (PACE) would be terrific foundations for a MediCaring Community,” continued Lynn. “To address the needs of millions of seniors, we must use the next few years wisely, aiming to deliver much more reliable and comprehensive care to high-cost elders—without increasing the costs. Now is the time to take these lessons and use them to change how we help older adults, and bolster programs across the country that will help elder communities thrive in the oncoming ‘age of longevity.’”

Contact: Judith Zimmer [email protected] 212-355-8400

About Altarum
Altarum (www.altarum.org) integrates objective research and client-centered consulting skills to deliver comprehensive, systems-based solutions that improve health and health care. Altarum employs almost 400 individuals and is headquartered in Ann Arbor, Michigan, with additional offices in the Washington, D.C., area; Portland, Maine; and San Antonio, Texas.

About The Milbank Quarterly
Continuously published since 1923, The Milbank Quarterly features peer-reviewed original research, policy review, and analysis from academics, clinicians, and policymakers. The Quarterly’s multidisciplinary approach and commitment to applying the best empirical research to practical policymaking offers in-depth assessments of the social, economic, historical, legal, and ethical dimensions of health and health care policy. The Milbank Quarterly is published in March, June, September, and December on behalf of the Milbank Memorial Fund by John Wiley & Sons. www.milbank.org/the-milbank-quarterly

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

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 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 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