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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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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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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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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