Sep 282015

By Joanne Lynn, MD

If you are hoping for a good night’s sleep, don’t read the stories told by Marcy Cottrell Houle of her parents’ last years of life just before you go to bed. But do read The Gift of Caring: Saving Our Parents from the Perils of Modern Healthcare [], which Houle wrote with geriatrician Elizabeth Eckstrom over a cup of coffee. That will get you fired up. The litany of catastrophes that occur in our poorly organized medical care system—preventable, avoidable suffering—is overwhelming. So far, though, no one is listening. No one is reacting in horror, and no one is changing the system to stop these errors. We need to turn up the volume of our protests!

Marcy’s father was once abruptly discharged from the hospital to a nursing home that lost him! The nursing home put him in a room at the end of a hall and simply forgot he was there! No hygiene, no food—nothing was provided for him. In fact, the staff forgot to give him water for so long that he developed renal failure. He was later drugged to manage his behavior, which was eventually traced to pain, readily treated with acetaminophen. His case spiraled on and on.

Marcy’s mother had all the geriatric complications: delirium, falls, anti-coagulation, terrible aides. Worse still were her run-ins with physicians who wouldn’t pause to make sense of sudden changes in mental status, because they just assigned every dysfunction to “old age” and “dementia,” even when her mother had been functioning quite well just a day before.

Yes, it’s all there, terrible and terrifying. Dr. Eckstrom writes a chapter after every calamity about how patients and families might prevent or cope better. The book is a rare gem to help people who must navigate our “care system” for frail older people.

But it is maddening.

If you bought a toy that fell apart in a dangerous way, you could report it to the U.S. Consumer Product Safety Commission, and they’d investigate. If a person has a near miss from a safety defect in a car, the National Highway Traffic Safety Administration wants to hear about it immediately. If a medication causes a serious side effect, the Food and Drug Administration has a consumer online reporting form. Indeed, any of these and more pop up when I search online. But just try reporting that your dad was lost in a nursing home. You have to be knowledgeable enough to find the ombudsman program or the Quality Improvement Network or know a lawyer willing to threaten to sue in order to call attention to a grave mistake.

The problems in care of the elderly are not just “errors” in the usual sense of unusual mistakes. In fact, they are baked right into our current delivery system. The errors are not just a nurse or aide slipping up on some critical step. Instead, all the nurses and aides and everyone else are working in a system that is so dysfunctional that actions that cause pain or neglect are not even called out as errors. Consider that I can go up to an ATM in the remote wilderness somewhere in the world, and the banking system will know whether I have money in my account; but if I am discharged from the hospital, my community physician won’t know anything about what happened to me in the hospital, often even if she’s been my physician for years and I told the hospital folks this.

Think about the profound errors that are made when medical professionals simply have no idea what matters to patients and their loved ones. They never ask! For example, consider two men living with the same advanced degree of disability from Parkinson’s disease. One might want to spend anything and do whatever is necessary in order to survive long enough to finish a personal project, while the other might really want not to leave his spouse impoverished. The second man might feel at peace with the fact that life is coming to its end and even to feel OK with letting it end a bit early in order to have things fall into place for those he loves.

Today, emergency room staff do not know any of this because of the way in which we have put this system together. Both these men experiencing a sudden deterioration, however, would have to use the emergency room, because we don’t have 24/7 on-call physicians organized to come to their homes. We don’t even have home-delivered meals for many elderly persons in need in most of the country; the waiting lists are routinely more than 6 months long, because we have not chosen to fund the Older Americans Act adequately.

What are we doing? And how can we complain effectively? Each family somehow believes that its situation is bad luck or “how things are.” There is no benchmark by which to set expectations, so the families accept the errors, dysfunctions, suffering, and impoverishment that so often come with disabilities in old age. Why are the errors of our system not being debated or even mentioned in political campaigns? How can we change this?

We can start by changing our abysmal expectations of the services that we get. Let’s question why the care system is so deaf to the priorities of our loved ones everywhere we can—in the newspapers, in the candidate debates, through social media. Let’s reengineer current services, build highly reliable care systems in our communities, and see what it really costs. Projections for the costs of a community-anchored care system that is person centered and flexible enough to bring most services into the home are not much different from current care arrangements. Let’s record stories, good and bad. Let’s figure out how family caregivers can become politically powerful. Why is it, for example, that Medicare has no standing advisory committee speaking for the interests of its millions of beneficiaries? If we are lucky, we will grow old. So it’s our future, too, not just our parents’!

We’ve started an initiative to get family caregiver issues on the party platforms in all states that generate party platforms. You can join the Family Caregiver Platform Project initiative. It takes very little time and gets leaders talking. Go to to sign up now.

There are some bright spots on which we can build: The Centers for Medicare & Medicaid Services has introduced payment for advanced care planning discussions between Medicare beneficiaries and their physicians. We agree that this is a good idea and strongly support it. But care planning is not just an end-of-life matter; it needs to be comprehensive and a standard practice. All health care providers and social services agencies should pursue the goals that the elder and family actually most want.

What else can you think of? We need other leverage points that would focus the pent-up frustration of millions of family members who have already witnessed the misery of ordinary elder care. What should have been available to Marcy as she helped her parents live their last years? Hers is a story that we can all absorb and tell others; then we can go out and insist that our care system change. Eventually, Marcy and her family found some exceptional paid caregivers, and together they achieved some good experiences, even triumphs. But this came after needless suffering. She would say that she’s lucky, and others would say that she’s especially skilled and capable. Most of us need a care system that does not require exceptionally skilled and capable family members or good luck. Read her book, and help us push for a care system that works reliably for our old age!

May 192015

By Joanne Lynn

Very, very dysfunctional. You need evidence? Try these two tales.

First, a remarkably illuminating piece of research was released on March 2 concerning the Meals on Wheels program (—march-2-2015.pdf?sfvrsn=6). The title was “More than a Meal,” and it showed that people who got warm meals home delivered by volunteers 5 days per week did better in many ways than people who got frozen food delivered once a week and much better than those who were on a wait list for Meals on Wheels. That finding was not surprising: Our mothers could and did tell us enough to expect that finding, though it is good to have it properly documented.

What is so profoundly dysfunctional is that there were eight U.S. cities participating that each had waiting lists for Meals on Wheels of more than 6 months. That’s right: The program to provide food so that elderly people could stay at home, live with dignity, and count on a friendly face coming by on most days has a waiting list longer than many needy people’s life spans. What happens when cities build up 6-month waits for food? Most on the waiting list can’t shop; most can’t cook. Some neighbors help out. Some find enough money to get fast food. Many get sick or dizzy and end up in the emergency room, the hospital, and then a nursing home. All are hungry, and none thrive.

The cost of home-delivered meals for a year is less than just the ambulance trip to the emergency room. The cost of one hospitalization would pay for a hundred people for a month. Yet we are primed to provide the ambulance and the hospital but not lunch! The funding for Older Americans Act services has increased less than 5% in a decade, while the funding going to Medicare has doubled. These priorities were not set by 88-year-old women living alone in poverty but by much younger men scared of heart attacks and wanting assurance of rescue.

But wait; there’s another story. This one is about my mother, now in her 94th year. She caught a cold, which progressed to pneumonia, and she was quickly in a precarious state. The craziness started when her primary care physician, making a home visit (yes, a home visit!) noted that my mother could not get a good broad-spectrum antibiotic except by going to the emergency room, because all pharmacies near her small-county seat in western Pennsylvania were closed on Saturday night and all day Sunday. Feeling like a participant in a modern-day Iditarod, I got the antibiotic and drove 4 hours to deliver it, and it actually did the trick. My mother turned the corner within 12 hours and was breathing much easier by Sunday afternoon.

But then she was very weak and severely dehydrated, which causes nausea, and therefore she required some way to accomplish hydration other than just by drinking fluids. I asked about home health care getting her some intravenous fluids. The answer: That would take 48 hours to set up. I asked whether I could buy or slip away with the fluids and an IV setup; after all, I’m a physician. That would break too many rules. I stumbled onward, asking what would happen if my mother were in hospice. Miracle delivered! In hospice, she could have an IV at home that day! Her primary care physician agreed that without something changing, her prognosis fit the hospice requirements, and having an IV could hardly count as “curative” medicine—except, of course, that it did put her back into her usual state of health, and then she left hospice care.

Now let’s think about this. The usual course would have been an ambulance to the hospital, an emergency room visit, and a hospitalization, perhaps followed by a few days of skilled nursing facility care “to get her back on her feet.” And that course assumes no serious complications like a fall or an infection. Hospice cost about 1/10 as much. But why did her doctor and I have to figure out an end run around the rules that seemed to connive to ensure that she would have to go to the hospital, if not to get the antibiotic, then to get the fluids?

This time, the priorities were set by service providers seeking their convenience and perhaps their incomes, not by 93-year-old women very much wanting to live out their lives at home.

Most of us will be relatively healthy for most of our lives. We will end up spending about half our lifetime health care costs in the last years of life, when we are frail; needing food delivered by a friendly volunteer; needing that antibiotic to be available without going to the hospital; and needing some IV fluids at home today, not after a lot of paperwork gets done. We’ll need that remarkable primary care doctor who visits at home. But I sure hope that not everyone needs a physician daughter who can find one more question to ask to evade the ruthlessness of a seriously dysfunctional system, and we must all insist that no elderly person will ever need to wait 6 months without being able to count on food—not now, not ever, not in the United States.

If you agree, talk with your Congressional representatives today about reauthorizing the Older Americans Act and call on them to actually increase the funding to account for the increasing numbers and the current shortfalls. Tell them to take Older Americans Act funding out of the pool that is at risk of sequestration. Join us in pushing for some leadership communities to focus on building a care system constructed around the hopes and fears of frail elderly people themselves. Join the campaign by writing to us at [email protected].

Dec 222014

By Elizabeth Rolf

Take a look at the Swedish national dashboard for eldercare. It’s a great model. An analytics approach that works, Senior Alert ( takes the preventive care of every individual patient and inputs the data outcomes in a quality dashboard for each municipality, accessible to doctors, patients, and the public. The civic leader or ordinary citizen can see how their municipality is doing in reducing pressure ulcers or antipsychotic use, and how many patients who need a preventive intervention have had it done. An interactive data system like this is an aspiration for many in the United States, but in Sweden, it is a wonderful reality. Earlier this month, Goran Hendriks, Susanne Lundblad, and Dennis Nordvall presented Sweden’s action plan to an audience in a webinar, which is available online. Many were able to see the results that this remarkable, comprehensive dashboard provides to guide improvement in preventive care by tracking data concerning the risks of falls, pressure ulcers, malnutrition, poor oral health, and incontinence. The information gained in a systematic way is often useful to understand how to treat the problem areas for each elderly patient as an individual, but the exciting application is the guidance it provides for shaping the care system for the entire elderly population of a particular municipality or country.

Lilly, age 95, provides the example used to demonstrate Senior Alert. Her story centers on declining health, increasing disability, and need of reliable care process. The registry that monitors her condition and services helps ensure comprehensive care. By registering Lilly for Senior Alert, her doctor, her family and she are assured that she will have a risk assessment by a team of professionals who will recommend and implement preventive interventions, evaluate these interventions and adjust accordingly.

The data system combines Lilly’s data with all from her geo-political area and provides up-to-date and interactive information as to the progress of each municipality and county with regard to excellent preventive service for fragile elderly persons.

Senior Alert was implemented in 2010, and in the last four years, all 21 counties in Sweden use the program and 288 of 290 municipalities are involved as well. In addition to public programs, 129 private health care providers use Senior Alert. In this time, patients are receiving personalized care plans, along with fewer risks to the patients because of the attention to the needs of each patient. As the process is followed, both the patient and the doctor can see improved results, and these results can be viewed publically online. The data collected can be used to track prevention progress daily for individual patients in many different categories, but collectively creating a reliable care process for Sweden’s entire elderly population. All results keep the patient confidential of course, but the public can access results of various actions.

Want to know more?

Link to Senior Alert:

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 192014

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

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

Community services include:

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

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

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

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

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

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

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

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

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

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 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.

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

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