Dec 032018
Nick Macchione, Joanne Lynn
Authors Nick & Joanne

By Nick Macchione and Joanne Lynn

This blog entry was written for the Milbank Memorial Fund and is reposted here with permission.

State and local leaders who aim to improve population health must help older Americans live well with the challenges associated with aging. Given the rapidly rising number of elders, local governments have remarkable opportunities to facilitate improvements in health and quality of life for elderly people living with disabilities and serious illnesses. In March 2016, the county of San Diego joined both the AARP Network of Age-Friendly Communities and the Dementia Friendly America network to create the Age Well San Diego initiative. Age Well San Diego expands on the foundation of the County’s Live Well San Diego vision of a region that is “Building Better Health, Living Safely, and Thriving,” which was first established in 2010.

Age Well San Diego is a five-year collaborative process of assessing needs and working with community partners to develop, implement, and evaluate an action plan. With support from the San Diego Foundation and AARP, the county’s Health and Human Services Agency first held an Aging Summit to introduce the concepts of age-friendly and dementia-friendly communities. Additionally, the county held listening sessions to garner feedback from the public and arranged targeted focus groups to gain input from racial, ethnic, and linguistic communities, which often are not well represented. The planning sessions included a broad array of county departments. Live Well San Diego has long recognized partners, community groups, and other health-related organizations. The variety of input led to a comprehensive “Age Well San Diego Action Plan” that was approved by the County Board of Supervisors in May 2018.

The Age Well San Diego Action Plan identifies five priority themes: health and community support, housing, social participation, transportation, and being dementia-friendly. Goals, action steps, timelines, and metrics to measure success have been developed for each theme, and dementia-friendly strategies are woven through the other four areas. During the next three years, the county will work with community partners, interested stakeholders, and older adults to implement the plan, coming together to build age-friendly, dementia-friendly communities that will benefit residents of all ages. The county will continue to work closely with community partners, government officials, professionals and older adults to build a brighter future for people of all ages.

Guided in part by this Action Plan, San Diego County is making major strides in aging well. For example, the county has one of the lowest rates of hospitalization of elderly people in the nation, a health information exchange that includes data from county services, and much of the county’s public education system has focused on preventing falls, the dangers of inactivity, and hypertension. With the focus on older adults, and an added emphasis on those with Alzheimer’s and dementia, the county is creating an environment in which the elderly are better supported with wrap-around services, thus bolstering and strengthening their ability to remain in their homes and communities throughout their lifespan. Moreover, Age Well initiatives help older residents avoid preventable illnesses, stay engaged in their local communities, and obtain adequate support in the last phase of life.

Despite progress, the county still faces a substantial set of challenges in ensuring supportive care for people living with the disabilities associated with aging. Scores of supportive service organizations serve elders, but their capacities and eligibility requirements vary or change and are not coordinated. Medical care systems are mostly local, and they have cooperated on projects to improve emergency preparedness and care transitions. Most of the MediCal managed care plans, however, are owned outside of the county and are not yet well-connected with local services. Elders and their caregivers are too often left frustrated and anxious, and too many must cope with living without essential services. The county is exploring how to monitor how well elders are doing, both when they are still robust and when they are living with serious illnesses and worsening disabilities. While addressing these ongoing challenges, San Diego County remains an example to others looking at what local governments can do for aging populations.

The Aging Well planning process makes it clear: if a health care financing and service delivery system were designed now for elderly people who might live for years with serious chronic conditions and disabilities, it would not be based on traditional fee-for-service Medicare. Instead, it would prioritize ensuring that adequate food, shelter, personal hygiene, eyeglasses, hearing aids, foot and dental care were all available. The affected population and their families would be involved in deciding which medical services help people live well and need to be readily available, and which services have little impact, given a patient’s age and condition, and need not be readily available. For people who can’t leave their homes, services need to come to them, with appropriately prompt response times.

Optimal policies must go beyond standard preventive health care services and medical care delivery to involve social determinants of health, including education, living or working conditions, and societal connectedness. The built environment, the local workforce, and the services available shape the experience of elders and their families in profound ways. Adapted housing and transportation for the elderly, for example, enable community living, while shortages push elders into nursing homes. When the elderly have access to parks and community spaces, they are more likely to get physical activity and engage with others, reducing isolation and depression.

These ideas are coming together in the MediCaring® Communities reform proposal. The MediCaring® Communities concept proposes additional reforms, including capturing funds saved from avoiding wasted and low-value medical care and instead investing them in community-based services. Currently, health insurance ensures that a frail elderly person can get any costly drug or surgery, but that same person often faces challenges in finding shelter, personal help with bathing, or dental care because these essential services have inadequate funding.

San Diego’s social services and its health care providers have long been committed to enhancing the health of its people, as demonstrated by Age Well San Diego and other collaborative and innovative endeavors. However, the county’s ability to test more fundamental reforms is constrained by established processes and financing. Creating a set of reliable and efficient social arrangements to support a large and rapidly growing number of frail and disabled elderly people will require the opportunity to test substantial innovations. The MediCaring® Communities model provides such an opportunity.

The Center for Medicare & Medicaid Innovation within the Centers for Medicare & Medicaid Services should enable a few communities, like San Diego, to work intensely with their elderly population to demonstrate how a highly reliable and efficient aging care system could be developed for the elders who must live with disabilities and illnesses. Funding should aim to stay within current aggregate costs to elders, families, communities, states, and the federal government, but some funds would be directed to reforms that benefit all elders and their families—such as workforce training, caregiver support, dental care, and so forth. Many communities likely would join and build this future—just in time for the aging of America.

Nick Macchione serves as San Diego County’s director of the Health and Human Services Agency, which serves over 1.3 million people. He is also the architect and strategist of “Live Well San Diego.” He is a fellow of the American College of Healthcare Executives, a Public Health Leadership Scholar with the Public Health Institute/Federal CDC, and a Creating Healthier Communities Fellow of the American Hospital Association. Macchione holds master’s degrees from Columbia University and NYU specializing in leadership, management, and policy. He serves vice chair of the Milbank Memorial Funds’ Reforming States Group.

Read Joanne Lynn‘s biography.

Jun 202016

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

ISBN-10: 1481266918

List Price $9.95 at

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

MediCaring Communities book cover

MediCaring Communities book (click cover to view on

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

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

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

You can read extracts online.

Advance Praise for MediCaring Communities

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

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

About Joanne Lynn

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

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

About Altarum Institute

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

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 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

Oct 172013

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

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

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

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


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

Jun 242013

by Dr. Muriel Gillick

A whopping 86 million Americans are family caregivers for an adult with significant health problems, according to a new report. Untrained, unpaid, and unlicensed, they take care of some of the sickest patients in the U.S.

Just under half of these caregivers provide complex medical care: this is a level of care that only doctors or nurses would be allowed to administer if the patient were in a hospital or nursing home. They supervise their family member’s medications, drugs that may have side effects so severe that patients taking them need to be hospitalized. They apply dressings to wounds, a procedure that is sometimes so painful that the patient has to take narcotic pain medicines beforehand. A minority even give intravenous medication or use equipment such as dialysis machines or ventilators that are customarily operated by specially trained professionals.

In the last three years, the percent of Americans serving as caregivers to an adult with health issues has gone from 27% to 36%, presumably related to the growth of the elderly population, the recession (which forced families to take on caregiving responsibilities rather than hiring outsiders), and the rise of chronic illness (fully 75% of older adults have at least one chronic disease such as diabetes or emphysema). The focus of the new survey is how these caregivers get the training they need to do their jobs.

The answer is both unsurprising and disturbing. When caregivers seek help, they rely heavily on a web search.

Caregivers often do consult a health professional—79% of them report they spoke to a clinician about their concerns. But they report wanting and needing much more guidance in carrying out their daily responsibilities. They say they use the internet to learn how to monitor drugs and how to diagnose and treat disease. What they uncover on the web ranges from sophisticated, up-to-date medical information to downright disinformation. Fortunately, a professional agrees with their diagnosis 41% of the time, according to the study. In the majority of cases, a clinician disagrees with the caregiver’s web-based diagnosis (18%) or the caregiver never seeks the advice of a clinician (35%).

It is time to recognize family caregivers as members of the health care team and make sure they get the right kind of training to do their job, just like their professional colleagues. To date, “caregiver support” has largely been psychosocial, intended to ease the stress that comes from taking care of a chronically ill relative an average of 20 hours a week. “Support” for the sophisticated role that caregivers often play, a role that is the key to optimizing medical treatment and minimizing hospitalizations, will require new resources. We need to be creative about designing these materials, recognizing that 60% of all caregivers have another job, usually full time. We will need to design videos and massive on-line courses (MOOCs) as well as how-to guides. The physicians who care for the frailest and sickest patients should take the lead: it’s what their patients need.

Dr. Muriel Gillick, is a geriatrician, a palliative care provider, and a professor at Harvard Medical School. She blogs weekly at Life in the End Zone ( She is the author of “The Denial of Aging: Eternal Youth, Perpetual Life, and Other Dangerous Fantasies.” This post appeared on her blog on June 24, 2013, and is reprinted with her permission.

key words: geriatrics, frail elders, family caregivers, caregiver support, Muriel Gillick, palliative care<

May 302013

by Anne Montgomery

There’s a reason why the nation has convened a White House Conference on Aging (WHCOA) once a decade, and it’s this:  Historically, these seminal events – which involve thousands of people feeding in ideas from communities across the country – have spurred creative consensus at a national level about how apparently intractable current challenges can be practically approached, even as strategies for making promising opportunities a reality over time are also mapped out.

The United States is now in Year 3 of its “Age Wave,” and it’s become clear to policymakers and stakeholders alike that much work remains to be done to build sufficient capacity for delivering the comprehensive array of services that our aging society demands, in the form of policy frameworks that align financial incentives and position a broad array of mostly non-coordinated providers to be accountable for delivery of consistently good-quality services.  So how can we get from where we are today to meeting these goals? What policies and strategies will get us there?

This is where the WHCOA comes in.

The first Conference was held in January 1961 at the directive of Congress, which established it in legislation that was enacted in 1958 (Public Law 85-908).  In addition, in 1959, a Senate Subcommittee on Problems of the Aged and Aging was established, and three years later, this panel was elevated to become the Special Committee on Aging.  In the words of then-Aging Committee chair Sen. Pat McNamara, the convening Conference was dedicated to “bringing to national attention the problems, potentials – and challenges – of an aging population.”

For perspective on what McNamara and other framers had in mind for the WHCOA, here is how the aspirations of an aging society were framed in the Aging Committee’s foreword, which accompanied the first Conference’s final report:

“Today the life expectancy is around 70 years.  In 1900, it was less than 50 years.  In the lifetime of today’s younger generation, without any further progress in medical science, an average life expectancy of 80-85 will be typical….Our traditional approaches to the ‘aged’ require reappraisal in the light of hard facts. For one thing, past approaches were characterized by a tendency to look at the problem involved – if indeed, problems were recognized – in a fragmented way.  A systematic, coordinated outlook and action policy [emphasis added] are increasingly called for as we become more and more conscious of the impact of the aging trend in our society upon the lives of the total population and even upon the policies relating to matters not otherwise considered as directly affected by the emergence of the ‘problems of the aged.’”

More than 50 years later, these prognostications have turned out to be remarkably accurate. According to the Social Security Administration, a man reaching the age of 65 today can expect to live, on average, until 83. A woman turning 65 today can expect to live on, average, until the age of 85.  Equally or perhaps more important, one out of four 65-year olds will live to be 90 years of age or older, and one out of 10 will live beyond age 95.

The WHCOA framers could not know which, if any, of the many ideas and recommendations that were suggested and debated in 1959, 1960 and 1961 – the first Conference was held after 2 ½ years of public meetings and deliberations–would be adopted.  Many focused on health care and income. Today, looking back with the benefit of hindsight, we know that in 1965, Congress enacted legislation establishing Medicare, Medicaid and the Older Americans Act.  These statutes and programs have grown in scope and importance over the years, and they are widely acknowledged to be essential for meeting the challenges of our nation’s quickly accelerating “age wave.”  The issues being debated at present are whether these and other public programs, along with private-sector options, have adapted sufficiently to meet the challenges of the 21st century. Many are arguing that further reforms are warranted.

Yet looking ahead, the policy picture is far from clear. The current state of discussion about Medicare and Medicaid is vigorous – but divided.  No firm consensus has emerged on the specific nature of what changes are essential.  Moreover, the Older Americans Act, which is overdue for reauthorization, has been overshadowed by a range of other issues that are deemed to be more pressing.  At the same time, the number of Americans turning 65 each day grows by about 10,000.

This situation suggests that a national conversation in the form of a WHCOA, to be held in 2015, and accompanied by a process of meetings and conversations – both in-person and online – to solicit input and ideas from thousands of citizens across the country would be a sound civic investment – just as it was more than five decades ago.

All WHCOAs have resulted in subsequent adoption of signature initiatives.  For example, the 1971 WHCOA is given credit for creation of the Supplemental Social Insurance program and establishing the National Institute on Aging within the federal government’s biomedical research establishment, the National Institutes of Health.  In 1995, the WHCOA called for establishing a program to recognize and assist the nation’s millions of family caregivers – which led to enactment of the National Family Caregiver Support Program. This WHCOA also highlighted a pressing need to develop strategies for detecting, addressing and preventing elder abuse, along with improved opportunities for retraining and assisting older workers.  Notably, it rejected the notion of pitting programs for older adults against those that serve cohorts of younger adults, adolescents and children.

Most recently, the 2005 Conference provided momentum for reauthorizing the Older Americans Act in 2006, which strengthened the role of Aging Disability Resource Centers (ADRCs).  Discussions of elder abuse generated widespread attention and interest, and were transformed into a discussion on elder justice, which in turn helped to prompt Congress to enact the Elder Justice Act in 2010.  Significantly, the 2005 Conference flagged the issue of coverage and support for long-term care as a critical and emerging issue—one that is awaiting further action.

To forecast what the next WHCOA might be able to help develop in one key area, it is useful to review some of what the delegates considered when they assembled more than 2,500 delegates in Washington, D.C. in 1961.  The four-day meeting resulted in a report that covered 20 areas of emphasis. Among these was a section titled “Local Community Organization,” which declared, in part:

“To put total emphasis on the care of the aged, as opposed to developing a community in which one can age with dignity and independence, would poorly serve the coming generations of Americans. We must not create the continual crisis of ‘problems.’ A total program of local community awareness and individual responsibility can develop the great opportunity which we presently have in the lengthened lifespan of Americans….To create this activity in the local community, where the individual must live and function, it is recommended that local communities immediately create a Committee on Aging through which planning may be done for the good life that can be achieved by and for its elder citizens.”

With the subsequent establishment of 50 State Units on Aging as part of the Older Americans Act, and more than 600 local Area Agencies on Aging and their close cousins, ADRCs – which aim to be potential portals for long-term care services and supports – the concept of building stronger networks of cohesive, locally-rooted initiatives that can support frail elders and individuals with disabilities in their own communities is one that has the potential to create a series of lively and productive discussions at the next WHCOA.

In this and many other areas, there is a lot left to do – so if you or your organization would like to lend support to the idea of convening a WHCOA in 2015, please take a moment to read the “Letter to the President” (supported by more than 40 organizations including AARP and the National Council on Aging) and then send in your own request.

[Update: The White House Conference on Aging was held in 2015. Read the “Final Report of the 2015 White House Conference on Aging”.]

Anne Montgomery is a Visiting Scholar at the National Academy of Social Insurance and a Senior Policy Analyst at the Altarum Institute. She worked for the Senate Special Committee on Aging from 2007 until early 2013. This article originally ran on the NASI website ( on May 13, and is reprinted here with Anne’s persmission.



Key words:  White House Conference on Aging, National Academy of Social Insurance, Anne Montgomery, age wave, aging, elder care, frail elders