A Future So Bright? Or So Old? Challenges for an Aging America

 Posted by on April 29, 2014  No Responses »  Tagged with: , , , , ,
Apr 292014
 

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

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

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

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

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

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

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

References

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

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

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

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Multidisciplinary Teams and Holistic Care for Frail Elders

 Posted by on April 28, 2014  No Responses »  Tagged with: , , ,
Apr 282014
 

 For most of us, for most of our lives, healthcare involves doctor visits for routine and acute care, and sometimes visits to specialists when dealing with complex or advanced illness. To be sure, many of us also find health and healing beyond the walls of a clinic or the contents of a medicine cabinet—attention to diet, exercise, spirit and community can also strengthen us. For the very old, the very frail, managing health becomes less a process of preventing and treating illness, and more a concern of maintaining function and enjoying quality of life. To this end, very frail adults often shift focus as their needs and situations change. And while medicine remains part of the equation, other services become tantamount: long-term care, for instance, as well as good nutrition, access to affordable and safe housing, reliable transportation, and ways to remain connected with the larger community.

MediCaring Communities will work to meet these needs by helping to align the needs of frail elders and their families with the mix of health care and social services a community can provide. The MediCaring model would ensure that all members of a multidisciplinary team would know all enrolled individuals: these individuals and their families would be real to professional caregivers, who would understand their situation and priorities, in part, through the presence of a comprehensive care plan.

The MediCaring model includes all covered services under Medicare and Medicaid.  However, by working with elders and their families to understand the realities of what they face, the benefits and costs of treatments, and strategies to achieve goals and priorities, MediCaring elders may be less inclined to opt for very expensive and burdensome medical treatments and more likely to choose options that enhance quality of life, maintain comfort, and ensure dignity. The MediCaring model would not bar choices or limit access; rather, it would aim to ensure that elders and family members clearly understand the degree to which a treatment or procedure will offer any help, and the costs (i.e., physical, emotional, financial) of pursuing it. Elders would never find themselves barred from medical treatments that they want. Rather, they and their families would be part of an informed and thoughtful decision-making process and able to understand and decide which treatments and procedures to pursue, and which to avoid.

The following list highlights key characteristics of a prototypical MediCaring community.

Multidisciplinary Team. A multidisciplinary team whose sole focus is frail elders will coordinate person-centered care in the community. Teams would include clinicians and practitioners trained and skilled in diagnosis and treatment; medication management; rehabilitation; self-care; nursing care; mental health; caregiver assessment, training, and support; nutrition; community services; and housing.  Teams would include a physician, nurse, and social worker, as well as ongoing and reliable access to pharmacists, rehabilitation specialists, mental health experts, housing services staff, caregiver support personnel, and legal advisors. The team’s capabilities and functioning would be measured and certified as meeting standards that reflect well-coordinated care, rather than adherence to a requirement for certain disciplines doing certain tasks.

Care Plans. The MediCaring team will work with elders and their families, and with one another, in developing comprehensive care plans. The local authority charged with implementing MediCaring would ensure that adequate and appealing community resources were available to meet the many needs elders have, including the need for services such as hospice and palliative care. The scope of care planning must respect limits that the person or surrogate prefer, while also addressing any issues that arise in terms of particular services, e.g., housing, finances, caregiver support, medications, and various therapies.

Primary Care. MediCaring builds on and ensures primary care for elders who live with advanced, serious, and complex conditions. Primary care for frail elders is not primary care as usual–doctor who provides routine prevention, chronic disease self-care education, and coordination of services from specialists. Rather, this is primary care writ large, responsive and responsible in recognizing and meeting the array of physical, psychosocial, and spiritual needs elders and families encounter. Although MediCaring builds on geriatric principles and palliative care standards and approaches, it is not limited to simply medical aspects of care for frail elders.

Continuity of Round-the-Clock Services. MediCaring includes continuity of services across time, settings, and providers, with round-the-clock coverage and real-time availability to the elder and  his or her caregivers. A MediCaring team would be charged with providing medical and nursing advice and support. In the case of an urgent phone call (or text or email) with a pressing health concern, a team member with appropriate skills for the problem would respond within ten minutes. Ideally, the team member on call would know the elder and caregivers, and would always have immediate access to an up-to-date care plan.

Home Visits. Very frail elders and their caregivers can be taxed and stressed by the challenge of simply getting to a physician’s office. Whenever feasible, urgent home visits to assess emerging situations should occur within three hours of a call (or, in rural or remote areas, telemedicine should be used). The process of developing care plans for MediCaring elders should include honest and forthright understanding about when and if to call 911, or to go an emergency department. For frail, homebound elders, many technical and supportive services, built on a competent physical examination, can be safely done where the elderly person lives, including simple diagnostic x-rays and imaging tests, blood and urine tests, skin biopsies, electrocardiograms, and more. This spares frail elders the difficulties and sometimes trauma of being moved to another setting simply to receive good care, especially when that care can so effectively be delivered to them. Home visits are a wise, safe, and effective alternative to preventing or delaying hospitalizations and nursing home placements.

Comprehensive services. In some cases, urgent issues created by crises of housing, nutrition, transportation or family caregiving arise, and, unchecked, can have a significant effect on health. MediCaring will focus on preventing such crises by having a sort-of disaster preparedness approach to frail elders: direct care workers will be on standby to cover a caregiver crisis; safe housing will be readily available for emergency placement; short-term funding will be provided for heat or air conditioning needs; reliable and safe transportation will be available for necessary appointments and other responses for addressable issues. Addressing the social determinants of health ensures an approach that avoids the current challenges many frail elders and their families endure.

key words: MediCaring book, Janice Lynch Schuster, Joanne Lynn, eldercare

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Very Old Adults Will Need Enhanced Social Services to Balance Medical Care

 Posted by on April 24, 2014  No Responses »  Tagged with: , ,
Apr 242014
 

Another in our series to build the MediCaring book. Judith R. Peres contributed significantly to this post. Please feel free to comment, expand, tell us what we’ve got right, and what we have missed.

For decades, older adults have relied on the medical system to cure or treat what ails them; but those aging into advanced age will soon discover that what they most need—and most cannot afford or find—are social services that deliver essentials, such as food, safe housing, and reliable transportation, as well as hands-on, personal care for activities of daily living.

Our healthcare system has long delivered—and paid for–the most advanced, most expensive medical tests and treatments, with little regard to their cost. Consider, for instance, our willingness to pay for the very latest cancer drug for very old people, even when it costs $100,000 per treatment, and even when it yields little improvement to quality of life or length of life.

And while we are keen to prop people up with medical treatments, we balk at paying for what very old people need most: housing, food, transportation, and personal care. Only when an individual has virtually no assets left does Medicaid’s  safety net kick in and help out. And even then, that help may be insufficient, particularly for services delivered in the home. Recent economic and political challenges have threatened the very fiber of that safety net, and millions of older Americans have found themselves wait-listed for food. Estimating the suffering and financial costs of these arrangements, as compared with a more optimal set of services, is difficult; but, by any metric, the magnitude of waste and unnecessary suffering is enormous.

Medicalization of Care: Leaving Frail Elders Behind

Traditionally, our social arrangements have separated medical services from social services, or long-term care (LTC). And neither of these has really been linked to services that guarantee adequate and safe housing environments. But for frail elders to thrive, these circles of care must become concentric and collaborative.

Imagine, for instance, what happens to a still-not-back-to-functioning frail elder who is discharged from the hospital. She gets home to a house that still includes stairs at the front door, or bathroom doors too narrow for her wheelchair or walker. Or consider the heart failure patient discharged from the emergency department, who is waitlisted for Meals on Wheels and, in the meantime, can only afford canned vegetables or soups laden with sodium. These all-too-common situations reflect failures of coordination that eventually cause healthcare setbacks, trigger re-hospitalizations, increase suffering, and lead to very high costs. With coherent care planning among spheres of care and influence, all of this could have been avoided—and better outcomes attained.

Rather than focusing only our open-ended payments for medical treatment, we should consider investing more in housing, nutrition, livable communities, caregiver support, and other services for frail elders. While most developed countries spend about 1.7 times as much on social services as on medical care, the U.S. spends only about 70% as much on social services as on medical care. (Bradley and Taylor, 2013) This medicalization of care affects frail elders particularly hard, since they need help that goes beyond medication, and includes help with the ordinary  tasks of daily life, such as eating, bathing and moving around. Who could deny that accomplishing these are, in fact, essential elements for a decent, dignified old age?

Aging in Place Will Require Doctor Housecalls—But So Much More

Aging Boomers, all 80 million of them, imagine and hope that they will be able to age in place, remain in their own homes and neighborhoods rather than moving to a nursing home. To achieve this, they will need a score of services that span medical and social supports, from needed include care coordination, medication management, home health and hospice, durable medical equipment, and telemonitoring and management, to personal care assistant service, such as those offered by homemaker and personal care agency services; home-delivered meals; home reconfiguration or renovation; transportation and more. Social services must also help their family caregivers, providing them training, respite, and support.

In the same way that pediatrics and obstetrics recognize that certain services are required to meet the unique needs of these phases of life, serving frail elders well entails an approach that proposes to make certain common sense modifications to the way services are delivered. This includes services that are paid for privately, publicly financed services provided by Medicare and Medicaid, those financed by the Older Americans Act and related state and community programs, and housing initiatives.

We term this approach MediCaring, which uses geriatric principles and palliative care standards and approaches – but expands to include a real focus on moving resources to cover essential social services. Imagine the elders described above. The first would have been referred to services to help pay for and modify the home to make it safe and accessible. The second would have had immediate access to nutritious, home-delivered meals.

At the same time, frail elders are likely to need help with medication management, and support for taking medications whenever a capable caregiver is not present, for instance, or a diet adjusted to fit whatever his or her personal care assistant can cook.  Elders and their families will surely need to consider how to handle the finances of long-term survival with worsening dependency, and how to deal with the next exacerbation of a chronic condition that could justify hospital care but might be better treated at home.

Some health information exchanges are beginning to include social services information –a major step forward.  All Area Agencies on Aging and Aging and Disability Resource Centers maintain a catalog of services in their community, though medical providers often do not realize just how valuable these services are.  As they are being developed today, community-based teams that are working to implement variations of the MediCaring model are also closely engaged in shaping the availability and quality of both health and social services – both  to arrange services for frail elders who need them, and to help set priorities for the most appropriate and cost-effective interventions available in their communities. It is a step forward—but we also need a leap.

 

Bradely, EH, and Taylor, LA. The American Healthcare Paradox: How Spending More is Getting Us Less. Academy Health Presentation, 2013. Accessed online at https://yaleglobal.yale.edu/american-health-care-paradox-why-spending-more-getting-us-less on April 24, 2014.

 

keywords: MediCaring book, Judy Peres, Judith Peres, Joanne Lynn, Janice Lynch Schuster

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The Very, Very Old: The Challenges of Increased Longevity

 Posted by on April 21, 2014  No Responses »  Tagged with: , , ,
Apr 212014
 

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

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

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

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

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

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

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

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

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

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

(1) Alzheimer’s Foundation of America. Alzheimer’s Statistics. http://www.alzfdn.org/AboutAlzheimers/statistics.html. Accessed April 21, 2014.

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Sink or Swim: We Urgently Need Better Care for Frail Elders

 Posted by on April 18, 2014  No Responses »  Tagged with: , , ,
Apr 182014
 

This post is the first in a series aimed at describing MediCaring, a new, better, and more affordable model for providing medical care and social services to frail elders and their families. In the next several weeks, we plan to post dozens of articles describing why we need such change, and how to make it happen. These materials will be the heart of a forthcoming book by Dr. Joanne Lynn and the Center for Elder Care and Advanced Illness. We invite you to read, comment, and share, as we build the ideas–and the momentum.

On a family rafting trip several years ago, I found myself bruised and battered after tumbling from a raft  into the raging waters. I was left standing on a rock in the middle of the river–my raft and mates ahead, trying to hold steady and not panic. Desperate though I was to get to them, the last thing I wanted to do was  jump back into the turbulent waters. My initial relief about the safety of my rock was doomed to be temporary. My only course to safety was  to plunge into the dangerous current and swim.  Convinced that I had no other choice, I jumped.

That experience may illustrate how so many of us feel when it comes to navigating the increasingly difficult currents of living to be very old in America. We cling to a false security created by programs like  Medicare, Medicaid, and Older Americans Act, and other social services that have  kept so many afloat for so long. And yet although there are millions of us now, and millions more on the way, we too often find ourselves alone in the currents of a  steadily rising current–one full dangerous and deadly undercurrents of poorly funded supportive services, medical overtreatment, and multiplying health care costs. No way  can we all cling to the same rock, or jump and hope to make it.

We simply cannot keep on this way.  If we do, we will force one another from the rock of current social arrangements. And for as long as the rest of us insist on clinging to that rock, hoping for a miracle rescue, millions of our fellow travelers will experience devastating consequences, as services shrink and costs explode. And we will not sink alone, but will take the fabric of society with us, as essential and important investments in healthy children and a healthy economy become impossible.

Even worse, if we fail to  tackle the challenges of right-sizing services for a much larger population of very old people, we are likely to be forced to   pick and choose who to pull from the river,and who to leave behind. We could attempt to sustain the illusion of helping some by providing the existing supports and services to an ever- shrinking percentage of those in need, while learning to accept that others will not have adequate housing, food, and health care.

That path is unacceptable.

Who among us wants to be saved from suffering and destitution while our friends and loved ones are swept away? Tradition and culture guarantee that we are all in this together. We will have to take our chances, jump in, and swim to a safer but unknown shore, despite our fears and uncertainty about what we might encounter.

We did not, of course, plan for this journey with the idea that we would wind up stuck on a rock in an increasingly threatening environment.  Decades ago, we designed a health care system that was well-suited to the needs and realities of those times. But circumstances have changed, and our systems must now change, too.

The first jump is to understand  a new set of facts and develop a new set of understandings. We can build our future in a way that treats us all fairly as we age, and achievesreliability and efficiency. Success is possible. We can get through the next fifty years of a rapidly aging society, having cared well for one another, and having avoided slowing our overall economic development.

However, the journey will entail some risks, and failing to get underway will only make it harder to succeed. When I plunged into the rapids, I had some strengths to build on. I could swim; I wore a helmet; and my loved ones were cheering me on. I  successful re-emerged on shore. And so too, our society  will improve our chances of navigating to the other side if we build on  our strengths, marshall our resources, deliberately plan for what’s ahead, and encourage and support one another along the way.  We may occasionally wash up in a spot that turns out not to be the best, but we can learn from that, and move on.

Doing nothing, we can continue to tread water and keep afloat a while longer. But eventually, even that hard work will fail.

 

We have a long national tradition of joining forces to solve seemingly intractable problems and challenges. We have never shied from taking on threats to our health, well-being, and security. And although the facts of aging seem so remote, so far away, the risks inherent in doing nothing are hitting us even now. One by one, family by family, we need to jump in and swim.

 

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

 

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All Systems Go? Use Community-Based Elder Care ACOs to Overhaul Long-Term Care

 Posted by on August 2, 2013  No Responses »  Tagged with: , , , , , ,
Aug 022013
 

 

Inside Health Policy features a July 31 article about  work underway at the Altarum Institute Center for Elder Care and Advanced Illness to test new models of care for frail elders:

An elder care center is applying to CMS to test an ACO-like organization that would care for the frail elderly, which some seniors advocates believe could be a model for overhauling the long-term care system to handle the coming wave of dependent elderly. Joanne Lynn, director of the Altarum Institute Center for Elder Care and Advanced Illness, said the approach, which resembles the accountable care organizations being tested on the general Medicare population, would add social supports that the current health care system lacks and would reduce ineffective medical interventions.

key words:  Altarum Institute, frail elders, Centers for Medicare and Medicaid Innovation, CMMI, CMS, ACOs, elder care

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Who Cares for the Frail Elderly?

 Posted by on June 24, 2013  No Responses »  Tagged with: , , , , , ,
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 (http://blog.drmurielgillick.com). 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<

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Time to Get Moving on a White House Conference on Aging

 Posted by on May 30, 2013  No Responses »  Tagged with: , , , , , ,
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 (www.nasi.org) 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

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Learn from Successful Outliers – or Shut them Down?

 Posted by on May 2, 2013  No Responses »  Tagged with: , , , , ,
May 022013
 

Last Sunday’s Washington Post (April 28, 2013) featured a long, thoughtful article by Ezra Klein describing an effective house visits program, Health Quality Partners, that is about to lose its CMS funding. The article, “If This Was a Pill, You’d Do Anything to Get It,” (http://www.washingtonpost.com/blogs/wonkblog/wp/2013/04/28/if-this-was-a-pill-youd-do-anything-to-get-it/) generated several hundred comments and lots of social media activity.

Klein describes CMS’ plan to end funding for a home health visit program developed by Pennsylvania’s Health Quality Partners. First developed as part of a demonstration created in the wake of the 1997 Balanced Budget Act, this little program has achieved great successes. An independent evaluation found that Partners, one of 15 in that demonstration project, reduced hospitalizations by one-third, and cut Medicare costs by one-fifth.

Despite that track record, CMS has notified Health Quality Partners that CMS funding will end in June. Over the years, it seems, CMS has learned something from the ongoing demonstration—but its attention has now turned to other projects, ones that it hopes will prove to be scalable, and in which it will invest tens of millions of dollars via the Center for Medicare and Medicaid Innovation (CMMI).

This seems—to Klein, to me, and to many people who commented on the article—a little counter-intuitive: If a new treatment or procedure had led to this kind of result, investors and patients would line up to support it and demand it.  But CMS appears to be stymied by good reports from one particular community about its own particular situation. To be sure, learning from the one gem in a demonstration program with more than a dozen that did not make the grade is difficult, perhaps more difficult to pull off than interpreting a clinical trial or testing an investigational new drug.

There are risks, to be sure, in assuming that what works in Doylestown, PA,  will be equally effective in St. Louis, Missouri, or in thinking that the concerns and solutions experienced in one community can be addressed by solutions devised by another. Communities are so varied in how they operate, and no one solution is likely to work for each.

Even so, many communities find that their frailest residents benefit from the kind of one-on-one attention to care that house calls can provide.  Each clinical service program must address real risks to effectiveness and efficiency—here, an obvious issue is how to target people for whom such a service is a necessity, one that helps them to remain independent and out of the hospital, rather than those for whom it would mostly be a convenience?  Also, how can incentives be structured so that profits are not a chief motivating factor—and so that costs are contained while care and outcomes improve? These issues require ongoing attention—from communities, from the health care industry, and from CMS, as they work to reshape  the health care industry to a framework that includes better care and services for the oldest among us.

As the country’s leaders and policymakers increasingly turn attention to the looming challenges created by aging Boomers, many look to individual communities and their successes.  In fact, it is likely that the solutions we need—and find—will hinge on what different communities are allowed to assemble: What each identifies as priorities, how each allocates resources, and where each turns its energies. Learning how other communities succeed at this hard work will be critical for others testing for inspiration and ideas. Dismantling a successful program—without even testing whether its principles can be adopted elsewhere or it can grow to scale–hardly seems to make sense.  Continuing to learn from it, and deliberately adapting it in ways that work elsewhere, seems to be a more responsible response. Throughout our history, we’ve turned to outliers to point the way—and inspire—others along the journey.

key words: home health care, house calls, CMS, coordinated care, frail elders

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