Category Archives: Featured Expert

CCAL will feature different aging services and support experts to provide a spectrum of perspectives and information. CCAL will invite a diversity of experts spanning the practice, public policy, and research sectors.

Advances in Person-Centered Dementia Care

  By lonp | June 7, 2013 - 2:31 pm |
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karen-loveby: Karen Love, Founder & Treasurer CCAL; Principal, Fit Interactive & Pathways to care

In 2001, the Institute on Medicine released a seminal report titled “Crossing the Quality Chasm” that called for a redesign of the nation’s healthcare system and described healthcare in America as impersonal and fragmented (IOM, 2001). The report noted that a critical element needed in redesigning the healthcare system was a shift to person-centered practices. These practices are rooted in humanistic psychology and the work of Carl Rogers and Abraham Maslow among others. Unfortunately, little progress has been made in the past dozen years to transform systems and practices to support person-centered outcomes. Recently, a group of concerned national dementia care experts decided to focus on advancing person-centered values and practices for dementia care.

Several significant events occurred in 2011 that catalyzed the gathering of this group of diverse dementia care experts representing the practice, policy, and research sectors to form consensus on a definition and conceptual framework for person-centered dementia care. This initiative is known as the Dementia Initiative. In early 2011, President Obama signed the National Alzheimer’s Project Act (NAPA) into law. Part of the law mandated the formation of an advisory council to make recommendations to the Secretary of the Department of Health and Human Services on actions to expand and coordinate programs to improve the health outcomes of people who have dementia. NAPA was viewed by many dementia care experts as an opportunity to spotlight and advance the implementation of person-centered dementia care practices. Sadly, NAPA’s primary focus has been on the ‘cure’ aspects of Alzheimer’s disease. The little focus given to dementia ‘care’ has been silent on person-centeredness.

In late 2011, the U.S. Senate Subcommittee on Aging held a hearing focused on the overutilization of antipsychotic medications for nursing home residents with dementia and the need for alternative care strategies other than automatically giving antipsychotic medications for what are perceived as behavioral challenges exhibited by people who have dementia. These behaviors are often expressions of unmet needs such as pain, hunger, thirst, boredom, loneliness, or an underlying medical condition that a person who has dementia is challenged to verbally communicate to a care partner or to address him or herself. Person-centered practices, considered the gold standard by the IOM and the World Health Organization (WHO, 2012), are oriented to the person and thus understanding and addressing the cause of the behavior being expressed.

A person-centered model of care reorients the medical-disease model of care that can be experienced as impersonal and fragmented to one oriented to holistic well-being that encompasses all four human dimensions – bio-psycho-social-spiritual. Person-centered care recognizes this multi-dimensionality dynamic and reorients practices to be delivered in a manner that is positively experienced which, in turn, helps promote holistic well-being.

A recently published article in Health Affairs describes person-centered care from one individual’s experience. While the example describes the experience of someone with a mental illness and not dementia, if a person who has dementia could publish an article in a national publication, they would likely echo this person’s sentiment. Ashley Clayton, a Yale University researcher, suffered for many years in her teens with mental illness. In the article, she describes the care she experienced when hospitalized and how receiving care in a person-centered manner helped her immeasurably. “The nurses got to know me and could support me in ways that were personally meaningful…These might sound like little things – a soda, an art project, a few minutes spent talking…Nothing they did cost extra money or required intensive training, but the fact that they saw me as a person – and treated me like one – helped restore my dignity and sense of personhood” (Clayton, 2013).

The diverse Dementia Initiative experts gathered for a one-day meeting in Washington, DC in June 2012 to form consensus about the definition and conceptual framework of person-centered dementia care. Discussions and email exchanges continued over the course of the next six months. In January 2013 a white paper titled “Dementia Care: The Quality Chasm” that provides the consensus definition and framework for person-centered dementia care was published. The white paper can be accessed online at http://www.ccal.org/national-dementia-initiative/white-paper.

There is no better time for our nation to “cross the quality chasm” for dementia care as NAPA and other national dementia initiatives provide timely pathways to spotlight and transform systems and practices of care to person-centered ones. Successfully evolving to person-centered dementia care practices will require the efforts of all stakeholders including individuals living with early stage dementia, family members and other care partners, healthcare practitioners, long-term care service and support providers, consumer advocates, policy-makers, researchers, funders, regulators, academicians, and scholars among others. The Dementia Initiative white paper provides the blueprint to transform dementia care values, systems and practices in this country to person-centered ones. With 5.4 million Americans living with dementia today and the number projected to increase three-fold by 2050, there is not a moment to lose.

References
Clayton, A. (2013). How ‘person-centered’ care helped guide me toward recovery from mental illness. Health Affairs, 32(2): 622-626.

Institute on Medicine. (2001). Crossing the quality chasm. Washington, DC: Institute on Medicine.

World Health Organization & Alzheimer’s Disease International. (2012). Dementia: A public health priority. United Kingdom: World Health Organization.

This post was first published by The Green House Project.

An eye to 2020: where will health care reform lead?

  By lonp | April 25, 2013 - 4:52 pm |
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by: Anne Montgomery, a Senior Policy Analyst for the Center for Elder Care and Anne-Montgomery blogAdvanced Illness at Altarum Institute. This article was originally published on Altarum’s MediCaring blog

Call Ezekiel (“Zeke”) Emanuel an optimist. Currently serving as Vice Provost and professor of bioethics and health policy at the University of Pennsylvania, much of his career has been about bucking mainstream medical thinking.  These days, Emanuel is using his background in medicine and ethics to lead conversations among health care policymakers and stakeholders in directions they must take: the impact of multiple, simultaneous delivery system reforms on costs.

“Keep an eye on 2020,” Emanuel told a crowd gathered by  Disruptive Women in Health Care at a March  briefing in Washington, D.C.  It will take that long, Emanuel suggests, to determine whether costs will begin to drop on a sustained basis.

Although critics continue to pound against the Affordable Care Act ceaselessly, Emanuel said, health care reform law is only now starting to unfurl its sails. To assign the law a grade at this point is “far too early. We’re not even close to the midterm yet.” But by 2016, state exchanges will be up and running, and other game-changing developments are likely to be on the horizon, including the possibility of “interoperable health records” created by “two young kids in a garage somewhere.”

By the end of the decade, “we’ll have better quality measures,” Emanuel continued, and “lower rates of infection in hospitals.” Such developments can help the U.S. health care system “get off fee-for-service” medicine, and chart a course toward other delivery system reforms and payment reforms. Whether these are Accountable Care Organizations, bundled payments, or global capitation — “whatever mix is fine,” he said. At the same time, Emanuel acknowledged that success “won’t happen overnight,” and “a lot of different payment models” will need to be tried.

“The problem is that fee-for-service and delivery system changes do not line up,” Emanuel said.  For example, marketing and advertising for costly procedures and treatments influence patient decision making.  More important, he observed, health care providers, many of whom are not primarily focused on delivering the best possible care for the most efficient price, follow entrenched patterns of practice. The result is that “rising [health care] costs are threatening wage growth and all of the other things we human beings care about.”

Despite the large challenges inherent in bending the health care cost growth curve, Emanuel does not advocate abandoning U.S. social insurance programs. Instead, he advocates serial systemic reforms.  For example, he notes that although “we don’t have a good alternative to peer review” (which some critics call a bottleneck to rapid reform) he believes it is feasible and imperative to develop new protocols for more rapid testing and dissemination of pilots, demonstrations, and other types of initiatives. “We need a frame shift to look at multiple factors at the same time,” he said. “We need to evaluate differently – with different standards and perhaps larger numbers.”

It is within this broader measurement context that Zeke Emanuel believes transparency will be an essential driver of change. “Doctors are highly competitive,” Emanuel told the crowd of Disruptive Women. “They are trained to want to be number one.” The current dilemma, he says, is that “the driven nature [inherent in] training physicians goes out the window when they start practicing.” But as quality measures increasingly become public, spotlighting how good processes of care and delivery are, along with patient outcomes and patient experience, “the big push for change” will come from providers, he predicted.

Emanuel also acknowledged that the quest to coordinate services and drive down costs must involve and engage individual patients. “Right now [patients] are not focused on costs,” he said. “They are not going through websites” to compare the costs of various procedures and treatments.  But if metrics of cost and quality can be “arrayed in a simple way” and if a “selection among them” can be developed to include price, this could help to drive costs “to a more reasonable level,” he said.  To that end, Emanuel is currently writing a concept paper on shared savings that discusses the possibility of sharing savings not only between health care providers, but also with patients.  If there is a choice between treatments that are clinically equivalent,” he reasoned, “why shouldn’t patients get part of the savings?”

Why not indeed?

Dinosaur Doctors and the Death of Paternalistic Medicine

  By lonp | March 6, 2013 - 9:32 am |
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By: Carolyn McClanahan – Physician/Financial Planner/Forbes contributor discussing all things money and medicine

Edmontonia_dinosaur.bmpThe traditional practice of medicine is a paternalistic affair – the patient goes to the doctor, the doctor tells the patient what to do and the patient does as ordered (or more often, doesn’t do exactly as the doctor ordered). The doctor plays the part of parent. Over the past century, this accepted medical practice did much to foster the “god complex” many doctors are perceived to have to this day.

Healthcare delivery has morphed through the decades, and we are in the infancy of a new and exciting phase – the age of patient empowerment. What exactly is this? Let me first share a story of what is not in the realm of physician-patient interaction.

My husband just turned the big 5-0. Although I am a physician and he is an engineer type, we both tend to be “minimalists” when it comes to healthcare. This means our idea of good health is accessing the healthcare system as little as possible, yet being very active in maintaining our health. The foundation of this is a healthy lifestyle and a very pragmatic approach to preventive care – if there is an intervention where the benefits significantly outweigh the risks, we will most likely agree to that intervention. For example, I have decided not to have mammograms until I am 50 years old – the benefits for me before age 50 do not outweigh the risks of having a mammogram.

One intervention that begins at age 50 is colon cancer screening. After weighing the pros and cons, my husband and I decided this is a worthwhile intervention. We made an appointment with our family physician for his age 50 physical and a referral for a screening colonoscopy. It really didn’t matter to us which doctor he would see for the colonoscopy since it was theoretically a one-time thing. Therefore, we did not question the referral to the large gastroenterology group in town. What is the worst that can happen?

My husband and I like to go to our rare doctor appointments together. Four ears and two brains are much better when processing the large amount of information sometimes thrown around when discussing healthcare. Plus, he is the analyzer and I am the decision maker – we complement each other because I am not fond of the detail work and he can have “paralysis by analysis” when forced to make a decision. So, as simple as a screening colonoscopy seems, I accompanied my husband to meet the doctor who would perform this lovely procedure. My husband was concerned about anesthesia, and wanted to have the procedure with as little anesthesia as possible. In all honesty, he really just wanted to be awake to see his beautiful colon directly.

The visit did not start out well. The appointment was running thirty minutes late and the waiting room was kept in sub-zero condition. I tweeted incessantly and did standing squats to stay warm. The medical assistant finally stepped out and called my husband’s name. We both got up and she promptly stated, “The doctor wants to see the patient alone. He will call you back later.”

My husband and I were both a little stunned but went along with the request. My husband is really good at speaking up when something doesn’t sit well with him, yet he does not become a squeaky wheel too early in any situation. I wish all patients without a medical background had his confidence and courage when speaking to medical professionals.

About fifteen minutes later, the physician called me from the waiting room. Once all three of us were situated in the exam room, the physician went through why my husband should get colon cancer screening. My husband then asked about anesthesia, and was told that he would receive conscious sedation. This caused a bit of confusion for my husband, as he thought this meant he would be awake and be able to see the procedure. I explained to him that this would knock him out and he would not be able to see his colon on the screen. My poor husband was visibly deflated.

Knowing that my husband was not happy, I tried to mollify the situation. I asked the physician, “Can I be in the room with him?” In an annoyed tone, the physician stated, “Absolutely not. I do not work like that.” And now I was annoyed.

My husband asked if the physician would do the procedure without anesthesia. He was promptly told something to the effect (but with bigger words I do not remember,) “And have you release catecholamine and factors that will cause your colon to go into spasm? That increases the risk of complications.”

By then, I was incensed. This dinosaur knew I was a physician and apparently thought I was stupid and didn’t do my homework. Or maybe he doesn’t know the truth. Anesthesia during colonoscopy increases complications. Lack of anesthesia decreases complications.

I kindly asked, “Do you know anything about patient-centered medical care?” I already had an idea about how he would answer, but just wanted to see the workings of a dinosaur brain. He said, “I don’t know that term. Is it where you let family in the room when you code the patient?” I answered, “It is a move towards patients being the decision makers, and a movement away from the old paternalistic style of medical practice.” I then asked the physician, “Do you know anyone who will do the colonoscopy without anesthesia?” In a very smug and annoyed tone, the dinosaur stated, “No.”

My husband can tell when I am moving toward my “Tasmanian Devil” mode. It doesn’t happen often and it isn’t pretty. At that point my usually indecisive husband made a hugely uncharacteristic move. He stated, “I think we’re done here.” He stood up, the dinosaur looked amazed, we shook his hand, and then we left.

So what really happened in this scenario? It basically was a breakdown in communication and expectations on both sides. You’ve heard the patient side. Let’s be fair to the physician and give him the benefit of the doubt for a moment.

  1. He has to see a lot of patients to earn his keep, which for the average gastroenterologist is a salary of about $330,000.
  2. He has probably done a colonoscopy without      anesthesia, and it took more time and discussion getting the patient through the procedure. More time equals fewer colonoscopies equals smaller paycheck.
  3. He probably had a complication during the procedure at some point in his career. Dealing with complications is easier if you don’t have to deal with the patient’s questions and discomfort at the same time.
  4. Medical practice has changed dramatically since he entered the profession. I estimate that he is in his mid to late 50’s and is in the cohort ready to hang it up because the new challenges are too much for him to take.
  5. I’m most certain he was never offered the “bedside manner” and communication class we taught in the family medicine department. This should be a requirement for every physician.

The patient empowerment movement is very young and has spent the past couple of decades learning how to crawl then walk. The internet and social media has accelerated this movement far beyond anyone’s expectations. It is exciting and dangerous. The patient is like a teenager with a new Ferrari and too many physicians are driving the old AMC Pacer.

Where do we need to go from here?

I often write about the need to hang out with diverse people and place ourselves in situations different from our usual state, yet my hypocrisy was made clear to me by my interaction with the dinosaur. I am so involved with patient empowerment and surround myself with those who believe as I do that I did not realize this old guard still exists in practice. This needs to change, but how?

First, patients need to learn how to drive the Ferrari. They should understand:

  1. Their own medical decision making personality. See “Your Medical Mind”      for details on this. By knowing how patients make medical decisions, the health care providers can tailor information in a way that complements their decision making process.
  2. What resources are reliable? There is so much junk present on the internet. The medical system needs to lead the way on providing clear, concise, complete, unbiased, and patient friendly information. For now, patients should steer toward sites with the least conflicts of interest.
  3. How to communicate using a collaborative process. Communication that comes from a place of openness, kindness, and the desire for good outcomes for all parties is the key. Putting physicians on the defensive from the beginning doesn’t foster great communication.
  4. The limitations of medical care. Medicine is still art and science. Very little in medicine is black and white, and we have to weigh probabilities when making decisions. Outcomes are not definitive and patients need to accept some responsibility. If medicine truly moves to a team based approach, this should open the door to quality tort reform and shared responsibility of medical decision making. We have a long way to go on this one.

Physicians are changing, and I have a feeling the old guard in place today will be gone in a decade or two. If not, they will eventually be pushed out or forced to change by many outside factors clamoring for a new style of practice. Here are a few to chew over:

  1. Obamacare promotes the creation of patient centered medical homes, a move toward prevention and wellness, and rebuilding of our primary care system.
  2. Payment provisions in Obamacare will move medicine away from being paid more to do more. Instead, providers will be paid based on how well they deliver care. This will include being nice and listening to patients.
  3. Patients are creating a force of their own. Websites such as Patients Like Me are providing patients with additional resources to manage their care. In fact, Aetna just announced a new collaborative project with Patients Like Me. In this pilot program, Aetna members can connect with other patients to help understand and manage their illness. This is a big move that side steps the physician community and empowers patients with information. If doctors are not careful, they may be relegated to prescription requests.
  4. Organizations such as the Institute for Healthcare Improvement focus on bold and inventive ways to improve the health of individuals and populations. I      attended their last national meeting and was blown away by the brainpower      dedicated toward improving patient empowerment.

These are indeed exciting times. Aren’t they all though? If we work together – everyone, including the dinosaurs – we can take patient empowerment from the teenage stage to full adulthood, and we will all be better for it.

How Person-Centered Living Can Improve Quality of Life

  By lonp | February 21, 2013 - 3:23 pm |
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Caring.Com interview with Jackie Pinkowitz, Board Chair, CCAL

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Choice. Privacy. Dignity. Respect. Independence. Autonomy. These are all words that describe what people want to have as they receive care, be it medical treatment, support, or services. They are also words that unfortunately describe what many people are not given when receiving care from healthcare, support, and service providers. Jackie Pinkowitz is the board chair for the Consumer Consortium Advancing Person-Centered Living (CCAL).

Tell us about CCAL.

Jackie Pinkowitz, board chair: CCAL is a national nonprofit consumer advocacy and education organization whose mission is to raise awareness about and advocate for the widespread implementation of person-centered care and living principles, policies, and practices in home and community-based supports and services (HCBS) for elders and individuals with disabilities living at home and in assisted living.

Karen Love, current board treasurer, founded CCAL in 1995 as the only national assisted living consumer organization. In 2010, our board of directors voted to expand our mission so that we could focus on advancing policies, practices, and research to support person-centered living.

What does “Person-Centered Living” mean, exactly?

JP: Regardless of who the individual is or where they live, CCAL advocates for the following Principles of Person-Centered (PC) Living:

  • Every elder and individual with a disability is provided choice, privacy, dignity, respect, independence, and autonomy.
  • Elders and individuals with disabilities have the right to determine their HCBS needs, decide how best to have those needs met, and to be provided a means to give feedback about the quality and nature of the services and supports.
  • A person-centered culture is nurturing, empowering, and respectful, and optimizes the well-being of not only the elder and individual with a disability but also the family and larger caregiving and/or services and support network.

Currently, how much influence does this person in need of care have when it comes to making decisions about the health and care services and standards that are provided to them?

JP: To put your question about influence into perspective, we have to acknowledge that many people feel overwhelmed trying to navigate our health and long-term care system because it is so fragmented. Much is being done to better integrate care across the different settings and healthcare professionals each individual uses in their community. Many local collaboratives are bringing together a variety of stakeholders at the community level to improve care transitions and reduce unnecessary rehospitalizations. But integration is in its early stages and will require time to develop and take hold across our country.

Indeed, how much influence each person has over their care is very much related to the degree of person-centeredness their hospital or physician’s practice or residential facility has adopted as part of its commitment to quality outcomes and excellence in patient-family experiences.

The greatest challenge for each person is to truly become a partner and decision maker with their doctors and care teams across the entire spectrum of healthcare services (i.e., for primary, acute, and post-acute care) and long-term supports and services (i.e., home health, residential care, skilled nursing care) they use.

That requires each person to be well informed about their health conditions; to ask lots of questions so that they understand the procedures and medications that each doctor or healthcare professional is recommending; and then consider what their own preferences, goals, and needs are in light of all the information.

Many individuals are fortunate to have a family member or friend assist them in their decision-making process. Others often turn to a professional geriatric care manager for assistance.

What are the aspects of senior care that are most glaring in terms of how they are not meeting the needs, interests, and preferences of the person in need of care?

JP: Just to provide some background on what is glaringly missing, the 2001 Institute of Medicine’s (IOM) report titled “Crossing the Quality Chasm” called for a redesign of the nation’s healthcare system and described healthcare in America as impersonal and fragmented. This report stated that a critical element needed in the redesign was a shift to a person-centered approach, moving away from the traditional clinician-/disease-centered approach.

So, many years later, the traditional approach to healthcare still focuses almost exclusively on the physical condition of a person. Health and well-being, however, are contingent upon more than the physical condition; it also includes the psychosocial-spiritual dimensions of the individual.

All dimensions of health and well-being must be accounted for when considering how to deliver quality care. Increasingly, research shows that “how” care is delivered can be critically important to overall success — as important in many ways as “what” care is provided.

We know that most providers intend to deliver the best services possible. To that end, they hire and train staff to implement services skillfully, efficiently, and effectively. But person‐centeredness requires so much more. It is all about relationships! Staff need to appreciate the uniqueness of those they interact with — and they need to show caring connections to them as they deliver services. As administrators, professionals, and staff achieve ongoing connectedness with the people they serve and with one another, the organization begins to demonstrate the essence of person-centered care and living by meeting the interests, preferences, and needs of those they serve.

What does it mean to be an informed eldercare consumer?

JP: Being an informed eldercare consumer means CCAL wants people to gather meaningful, reliable information and resources so that they and their loved ones will be prepared to make meaningful, reasonable, and realistic decisions about their health and long-term care needs, wants, and preferences as they encounter them.

The Internet is providing people with numerous connections to information, some of which is based on research and best practices, some on real-life personal experiences, etc. Consider the source of the information and reach out to national organizations like ours for additional resources.

CCAL encourages families to ask their providers many questions, take time to review your options, and make a thoughtful decision before you act.

In what ways are people harming themselves or their loves ones by not being an informed eldercare consumer?

JP: The most difficult issues for families to deal with are those around palliative care and end-of-life. I believe it is so very important for families to speak with their loved ones about their wishes regarding advanced directives, hospice, etc., before a crisis occurs and those issues become even more overwhelming.

From a public policy perspective, what are the most pressing issues CCAL would like to see addressed?

JP: Our nation is facing major public policy issues around healthcare today. CCAL has always believed that the greater good can be accomplished through collaborative efforts, by finding common ground through consensus among a diversity of people and perspectives.

This year, in light of the National Alzheimer’s Plan, CCAL created the National Dementia Initiative, a collaborative of 60 dementia-care experts representing research, policy, and practice to come to consensus on the philosophy, framework, and practices needed to advance person-centered dementia care in our country and around the world. The white paper, Dementia Care: The Quality Chasm was just released this week and will soon be on our website for families, care partners, and all stakeholders to read.

Clearly, issues surrounding Medicare and Medicaid are among those we are deeply involved in. We are already discussing how we can bring diverse stakeholders to the table to explore the complex issues surrounding the intersection and integration of our healthcare and long-term service systems.

Lastly, what is the best way for individuals or care professionals to get involved with CCAL?

JP: I would suggest spending a little time on our website, ccal.org, to read about us and our work. We welcome all interested parties to contact us by e-mail or phone, both of which are on our website.

CCAL is collaborating with three other national organizations to create a national Person-Centered Movement (“Person-Centered Is Better”) to make person-centered practices the standard for the way all healthcare and long-term services and supports (LTSS) are delivered and experienced. We welcome all interested individuals, organizations, and companies (local, regional, state, national) to contact us if they wish to be part of this timely and necessary Person-Centered Network.

Less Care, Better Care?

  By lonp | February 2, 2013 - 4:53 pm |
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By: Bob Ehrlich, Chairman DTC Perspectives, Inc

We live in a wonderful country. I am proud to live here. Some say we have the best healthcare in the world. I hear that a lot when debates on Obamacare air on talk shows. After all, if you have insurance you can get the best tests right away. Your blood can be analyzed to the smallest enzyme. Your body can be scanned with x-rays, sound waves, in 3D, and with all kinds of nuclear isotopes. Yes, it is a wonderful country.

The problem with all this available care (only for the insured), is that sometimes we ask and receive too much care. There are many studies that show some of these tests we routinely get lead to many false positives requiring more tests and more anxiety for patients. Sometimes these tests require follow up with invasive and risky procedures.

I just finished reading a book called How We Do Harm by a doctor named Otis Brawley. His book is a fascinating look at how doctors over-treat and how this leads to high cost in terms of dollars, pain, and sometimes death. We clearly have an over-treatment problem in America. We consumers many times demand it and doctors in our fee for service model are often happy to meet our demands.

I am guilty of this demand for rapid testing and diagnosis. I used to be a hypochondriac. I do not know why I had health fears but it peaked and ended in my mid-thirties. I suspect it had something to do with fear of leaving my young kids fatherless in a one income household. I imagined I had Lou Gehrig’s disease, rheumatoid arthritis, a weak heart, stomach cancer, and other serious diseases. I had great insurance so my imagined diseases were fully tested. I had numerous CAT scans, MRI’s, nerve conductivity tests, brain scans, EKG’s, and countless blood draws. I was fine but no doctor could convince me. I cost the insurance system many thousands of dollars. For several years I was a mental mess.

If we want to solve our budget crisis we need to consider the wonderful medical practice of watchful waiting. I do not mean ignoring symptoms or postponing tests. I just mean giving our doctors a little slack in how quickly they send people for tests. Unfortunately, doctors face two issues. First, they fear missing something and getting sued. Second, they want to satisfy their patients so if testing does it they do it. The advocacy groups scream when experts say we have too many mammograms or PSA tests. How dare those evidence based medicine guys recommend against a test!

Regarding prescription drugs, I must admit that some are over-prescribed. Patients want a pill for their complaints and sometimes they get it even though they may not need it or benefit from it. Over time, I expect more comparative effectiveness studies and some drugs will win and some will lose. The future of medicine will be more evidence-based and cost pressures will accelerate that trend. We, as patients, need to demand less, wait a bit longer for the expensive diagnostics, and not get angry with providers if they recommend no interventions, be it drug or surgery.

I’ll end on a personal story. I had my blood PSA (prostate) test recently. My usual normal was about 1.0, but this year it reached 1.6. That is normal but my doctor was concerned about the rise. Therefore I now am getting tested every three months to watch it. There was recently a recommendation not to do PSA testing. The study found it causes many biopsies and surgeries for a cancer that may never migrate outside the prostate. This is a test that once done often causes patients and doctors to demand additional tests and procedures. There are potentially side effects to surgery such as urinary and sexual issues. I am now caught in this testing conundrum. If my PSA goes up again I will be torn with a decision to get a biopsy and then maybe surgery. If I never knew my PSA I might be better off. That is the benefit and curse of our health care system that is limitless for insured patients.

Obamacare is going to cover a lot of prevention testing and we will all be potential beneficiaries and victims of our wonderful diagnostic medicine. That is, until we run out of money and then watchful waiting will rise again as a preferred medical practice.

Should We Drop “Dementia” from the DSM-5?

  By lonp | December 3, 2012 - 6:30 pm |
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by: G. Allen Power, MD – Eden Mentor at St. John’s Home in Rochester, NY, and Clinical Associate Professor of Medicine at the University of Rochester. He is a board certified internist and geriatrician, and is a Fellow of the American College of Physicians / American Society for Internal Medicine.

I was recently asked if I would be willing to write a blog post about the American Psychiatric Association’s plans to drop the word “dementia” from the 5th edition of their Diagnosis and Statistical Manual of Mental Disorders, due out next May. The new manual will replace “dementia” with two classifications: “minor and major neurocognitive disorders”. This announcement has caused a good deal of advance consternation, and an article by geriatric case manager James Siberski in the latest issue of AgingWell (http://www.agingwellmag.com/archive/110612p12.shtml) highlights many of these concerns.      As you might expect, I have a lot to say on the topic. Would it surprise you to know that I am not totally opposed to the concept? It is a very complex issue, so I will try to tease out some of the nuances here. I will start by describing what I think is good about the decision, then address some of the concerns that have been raised, and some lingering concerns of my own.

The APA decision to remove the word “dementia” was a response to concerns that the term was contributing to the stigma of the condition. According to etymologists, the earliest English usage was in the early 1500s, taken from the Old French word démence, meaning “madness” or “insanity”. At that time, insanity was a concept applied broadly, centuries before cognitive disorders were understood and separated from psychiatric illnesses. (We still struggle with that separation today—see below.)      Is there stigma attached to the word “dementia” in our society? Absolutely! We see it every day, in all walks of life (though I personally have seen more stigma attached to the word “Alzheimer’s”). A lot of the concerns raised about the new terminology have been centered on the potential effects of removing a word that is in such common usage throughout society. This is the first case where my feelings are decidedly mixed.      In theory, I strongly support the word change, because I am a staunch advocate of culture change and I believe that language choices help define our worldview. This makes any argument about word familiarity less convincing in my mind. After all, the majority of people use terms like “difficult behaviors”, but I would never let that fact stop me from avoiding the term in my own speech and trying to convince others to change their language too. So if the word “dementia” truly creates stigma, we should be equally insistent on changing it as well.      I also do not necessarily buy the argument that the DSM changes will increase the workload of most clinicians. My psychiatric colleagues are quite faithful in reporting the various DSM diagnoses and axes on their consultation notes, but I don’t know many internists or other practitioners who ever bother to do that. In my practice, I described diagnostic categories like schizophrenia, bipolar disorder, etc., but I never wrote out the official classifications, nor did the people with whom I practiced. (The fact that the DSM on my own office bookshelf is the 3rd edition—released in 1980 and revised in 1987—is a testament to how often I pull it out for reference.)      Furthermore, we are required to update medical classifications all the time. New scales, diagnostic criteria, and terminology are constantly appearing in the literature. So I don’t buy the doomsday predictions of the extra work that this might create. And the directive to try and distinguish different forms of dementia is really no more than what we already do.      My last supportive comment is that this is coming out of our national psychiatric association, which to me represents a major step forward in their thinking. I have seen a lot of stigma come out of this body over the years and I applaud their bold step in addressing a major aspect of stigma head-on.

But I do have concerns. The first is that there seems to be no coordination of decisions that are made on such a large scale and affect so many stakeholders. Mr. Siberski makes the excellent point that major organizations (Alzheimer’s Association, NIA, CMS, Americal Neurological Association, etc.) continue to parse out and classify “dementia”, apparently totally out of the loop of what APA is doing. Why can’t these groups talk to each other about such a huge issue? If we really want to remove stigma, then such changes need to be part of a more global movement to reform our language, one that has the support of many such stakeholders. (A shining example of better collaboration is the document of new dining standards for nursing homes, which was developed in conjunction with regulators, physicians, dieticians, culture change organizations, etc., before it was released.)      I also have issues with the classification itself. The use of “major” vs. “minor” neurocognitive disorder mirrors the way the DSM has long classified different types of depression. This can be problematic, however, when there appears to be such a spectrum of ability, rather than two clearly distinct categories. It almost suggests two different disorders, and as the AgingWell critique mentions, it ignores the concept of “mild cognitive impairment”. Once again, given all the work going on with neurologists around classification of MCI versus dementia, there should be more communication and collaboration here.      Regarding the actual terminology, I am as yet undecided. “Neurocognitive disorder” is, in my mind, less stigmatizing than “dementia”, but it doesn’t exactly roll off the tongue, particularly for the general public. If we want society to move away from the stigma of the word “dementia”, we need to give them an easier term to substitute than this.      I have been slowly moving away from using the word “dementia” myself—not so easy when it’s the title of my book! I often say “cognitive disability”—I like the mindset that comes with viewing dementia as a different ability, rather than a fatal disease. I sometimes say “forgetfulness” and have friends who strongly advocate for the term. I agree it’s far less stigmatizing and helps you see the whole person, though I also understand others’ objection that these conditions represent far more than simple memory loss.

But while I struggle with better language choices, there is a word in the new DSM that bothers me a lot more than any of these: and that is the simple word another. Each description of the neurocognitive disorders contains the caveat that the symptoms must not be “attributable to another mental disorder” (my emphasis). This revives the debate of whether dementia should be considered a psychiatric disorder at all.

Just today, British advocate (and person living with “whatever-it-is”) Norm McNamara posted the question to his Facebook friends as to whether dementia should “come under the mental health banner”. The majority of respondents said “yes”, but I continue to have concerns.      I have expressed before that seeing dementia as mental illness is one of the factors that leads physicians to treat the experiences of dementia in a similar manner to psychosis. This is a huge problem, because there is no neurochemical basis for using these drugs in dementia. The delusions of schizophrenia result from up-regulated dopamine activity, whereas in dementia, dopamine levels are generally low to normal. So dopamine-blocking drugs (i.e., antipsychotics) should not be expected to provide a similar benefit—why does no one talk about this?? Furthermore, one does not have to be “psychotic” to have a different experience of her surroundings, if normal processing pathways have been altered or lost. This “mental disorder” view is a big part of why we are mired in antipsychotic drugs to begin with.      At the same time, I am not advocating for dropping this family of conditions from the DSM entirely. If someone expresses something that seems abnormal to us, our reference books should list all possible causes, whether psychiatric or neurologic.      And just to muddy the waters a bit more (as Jesse Ballenger pointed out after a recent post), seeing dementia as neurologic illness can also lead to an overmedicalized view of people, so terminology and classification are only a part of the larger problem of stigma.

Confused yet? I am! This is tough stuff, but we must do whatever we can to not make life more difficult than it needs to be for people living with dementia and their care partners. If forced to summarize all of the above musings into a set of recommendations, I would suggest the following:

1) Rather than simply coming up with their own terminology, the APA should consult with other major organizations, to try and find some consensus. Lack of common wording is ultimately more confusing to the public than any one term alone.

2) We should continue to challenge the use of the word “dementia” (which is indeed stigmatizing), but do so in the larger context of a re-vamp of much of our language around the condition, moving toward a discourse that better reflects and centers on the whole person.

3) We should continue to include this family of conditions in the DSM-5, and keep it in the section that lists neurologic, rather than primary psychiatric illnesses.

4) Both psychiatrists and neurologists need to bone up on the extensive literature around person-centered approaches to dementia, to help them continue to evolve their views, language, and approaches.

This is the beginning of a new dialogue on cognitive disabilities. Let’s keep it up!

What Is Person-Centered Care, and Does It Work?

  By lonp | October 29, 2012 - 12:39 pm |
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by: Howard Gleckman – Resident Fellow at The Urban Institute; a member of the Board of Trustees, Suburban Hospital (Bethesda, MD) and co-chair of its Medical Quality Committee; member of the Board of The Jewish Council for the Aging of Greater Washington; senior advisor to Caring from a Distance, a non-profit that provides Web-based and telephone assistance to long-distance caregivers. A veteran journalist, Mr. Gleckman was senior correspondent in the D.C. bureau of Business Week, covering health and elder care, as well as tax and budget issues, for nearly 20 years. He was a 2003 National Magazine Award finalist for a series of Business Week articles entitled The Coming Revolution in Health Care. Mr. Gleckman is the author of Caring for Our Parents. (more…)

Patient-centered care (as it is described by doctors) or person-centered care (the phrase-more frequently used in non-medical settings) is one of those concepts everyone supports–except when it comes to the details. On Nov. 8-9, I’ll be participating in a two-day symposium sponsored by the Samueli Institute aimed at breaking down the barriers between the medical and non-medical world and seeking evidence to show the benefits of patient (or person) centered care.

The conference, which aimed at health care professionals, will be held in Alexandria, VA. I’ll be delivering one of the keynotes, along with Carolyn Clancy, director of the Agency for Healthcare Research and Quality. The Samueli Institute is a non-profit dedicated to integrative medicine, optimal healing environments, the role of the mind in healing, behavioral medicine, health care policy, and military and veterans’ health care.

When I talk to hospital and nursing home administrators, they all say they want to do a better job focusing on the needs of their patients or residents. And many say they are doing it well. But often, they are falling short of true person-centered care. They are improving what hotel marketers would call the “customer experience” by adding amenities. For instance, a hospital recently profiled in The Wall Street Journal now serves wild salmon on its menu and has added ESPN to it cable listings.

Nothing wrong with that. Who wouldn’t want better food in the hospital? But that’s not patient-centered care.

That facility, Grady Memorial in Atlanta, is also teaching doctors to–sit down now–stop interrupting patients while they are talking. Now that is progress.

But letting a patient speak is still not person-centered. That requires another step–actually listening  to what she is saying and making her and her family a real part of the care team.

In the end, it is all about control. It is about doctors asking patients about their goals–and paying attention to what they say–and sharing decisions with people who have no medical training.

This is not how doctors normally think. But it matters. Does a patient want to live as long as possible, or would she prefer to be pain-free even if it means giving up a few years? Does a patient want to take his chances with a high-risk surgery,even  if the outcome could be death, or a very poor quality of life?

Does a nursing home resident want a breakfast at 7 :00AM, or 10:00? Who wants spiritual rather than medical care? Who wants both?

The answers, of course, differ from person to person. And that’s the point. This kind of care requires doctors, nurses, and social workers to take the time to get to know their patients and what they want.

That raises the question: Does patient- or person-centered care work? Does it improve outcomes? In the end, are people who participate in their own care decisions healthier? And because there is so much focus on the cost of health care these days, does it save money?

The Samueli conference will explore many of these questions. I’ll be interested to learn what experts in the field have to say.

 

 

New Legislation on Antipsychotic Drugs?

  By lonp | October 3, 2012 - 1:56 pm |
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by: G. Allen Power, MD – Eden Mentor at St. John’s Home in Rochester, NY, and Clinical Associate Professor of Medicine at the University of Rochester. He is a board certified internist and geriatrician, and is a Fellow of the American College of Physicians / American Society for Internal Medicine.

There have been concerns raised for several years about the off-label use of antispychotic drugs in people living with various forms of dementia. But things got kicked into high gear last November 30th with HHS Inspector General Daniel Levinson’s report to Congress. CMS promptly took up the charge and has been working diligently to reduce such prescribing in nursing homes. (more…)

Over the past year, CMS has set a goal for homes to try to reduce their off-label antipsychotic use by 15% by the end of 2012. They will be releasing a new educational video series, “Hand In Hand” to all nursing homes this fall, and are working on a variety of educational initiatives for all stakeholders. Also, a National Dementia Initiative met in DC this past June to detail recommendations for a more person-centered approach to dementia, with a white paper being written for Congress as we speak.

AHCA took up the 15% reduction charge as a goal for their member homes, and last week NCAL proposed a similar goal for their assisted living communities by the end of 2013. (I’m still waiting to hear something from LeadingAge–anyone??)

Now the US Senate has raised the bar, introducing a bipartisan bill that would charge HHS to require informed consent before prescribing antipsychotic drugs to nursing home and assisted living residents. The bill would also establish monthly report cards on each home’s use of the drugs. (S. 3604)

Co-sponsor Richard Blumenthal (D-Conn) did not mince words. He called such drug prescribing “Elder abuse–plain and simple….chemical restraint as pernicious and predatory as unnecessary physical restraint.” Herb Kohl (D-Wis) added, “Despite the black box warnings and numerous multi-billion dollar settlements levied against pharmaceutical manufacturers for illegal off-label marketing, we continue to see an alarming number of dementia patients in nursing home and assisted living facilities being prescribed antipsychotics off-label…” Chuck Grassley (R-Iowa) is the third sponsor.

Strong talk, and it is laudable that the government is taking a stand on this issue, because a major barrier to medication reduction among providers is the belief that the regulators might penalize them for trying new approaches. As a member of the CMS Advisory Panel for these efforts, I can attest to the breadth and depth of their new initiatives.

Of course I will add a few comments of my own:

First, as I have mentioned previously here, the big secret is that this is not merely a problem with nursing homes, or even long-term care. The little data I have seen (including some of my own) shows that there is much, if not more, inappropriate prescribing happening in the community. Informal care partners are often ill-equipped to help their loved ones at home with minimal support. The fact that many community physicians do not have geriatric expertise is a likely factor as well.

Second, education is the key to success. Those who provide care will not be able to successfully reduce medication use unless they know how to care differently. New approaches to care are not intuitive and fly in the face of many of the common “truisms” about dementia, so both learning and “un-learning” are critical components.

Third, such re-education is not simply a “one-off” process – it requires repetition through hands-on tutelage to change patterns of care.  We must all recognize that there will be a learning curve, and we need to support those who may not immediately create significant reduction in drug use, but who are working conscientiously toward that goal.

Fourth, the process of “culture change” is vital to any successful approach. While I am not particularly fond of that somewhat vague and misused term, it should be understood that in order to change our approach to care, we must transform operations to align with that new philosophy, or it is doomed to failure.

To this end, my new Eden course, “Dementia Beyond Drugs” was specially designed to link a person-centered, “experiential” approach to the transformational steps necessary to create sustainable results.

Lastly, culture change is for everyone, not just nursing homes. That means that families need to be educated, and regulators need to continue to evolve their processes to support this new philosophy. (One area of great need here is negotiating acceptable risk to enhance quality of life, which too often is regulated on the side of surplus safety.) And our reimbursement system–which incentivizes illness and invasive care, as opposed to a relationship-based, non-pharmacologic approach–needs a big overhaul.

Legislation + education + culture change = success. Unlike Meat Loaf’s claim, two out of three won’t cut it.

Elder Zombies

  By lonp | September 14, 2012 - 1:12 pm |
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by:  Martin Bayne – Journalist, Buddhist monk, MIT graduate, and well-known advocate for the aging; cofounder & CEO of New York Long-Term Care Brokers, one of the nation’s largest LTC insurance brokers, Martin developed Parkinsons disease at the height of his career and has spent more than a decade energetically advocating from a wheelchair while personally experiencing life in LTC facilities.  He knows whereof he speaks.

Imagine if we went into the community and chose 90 people between the ages of 50 and 100.  Not just any people, but the most fragile and broken souls we could find: Those whose spouse has just died, or who had suffered a disabling stroke, those ignored and abandoned by their children, and the vast legions with ravaged brains who lost their minds to dementia. (more…)

Now take this group of sick, disabled, incontinent, depressed, demented and despairing people and put them all together in one building.

Also – and this is critical – make sure there’s no formal structure in place – If they choose, they can spend the entire day and evening in the common room, sleeping, or in their own rooms, watching television. They have no responsibilities or expectations, and thus, in many cases, no purpose. As a resident recently described it to me – “We eat, sleep and wait for death.”

Question: What would you pay to rent one of the 300 square-foot apartments in this building?

Would it surprise you to learn the building I’m describing is an assisted living facility and I pay $6,500 a month for my room?

And yet, I can assure you, money is not the issue.

The issue is zombies. And not Night of the Living Dead Zombies,

Real zombies. Like my mother or your father. Good people who fought in World War II, raised families, published newspapers, harvested acres of corn, and would have died at home in their own beds, naturally, with their family at their bedside . . .

If we had let them.

But we didn’t.

Aging and dying are messy and represent a great inconvenience to someone with a busy and sophisticated lifestyle. So, (with a good heart and the best of intentions), we ship them off like cattle, to warehouses for the elderly.

Institutions with catchy names like Continuing Care Retirement Communities, Adult Congregate Living Facilities, Assisted Living Facilities, and Sub-Acute Care Centers.

Then – perhaps a week, month, or year later – They become zombies.  You know the ones I’m talking about: They’re often the first residents you spot when you enter the facility — slumped and listing to one side in their wheelchairs, staring off into space, a long string of drool hanging from their mouths.

We ask ourselves, how did this happen? But the answer is a bitter pill to swallow. All the years we’ve encouraged residents to “be themselves” and “always look out for number one” has backfired and created a generation of elders whose lexicon no longer contains “community” or “benevolence.” They’re isolated, spend most of their life in their rooms and refuse to participate in community activities. In a word . . .zombies.

And during this screening of pain, loneliness and ambient despair —  as the whole drama plays out before us — we sit back with a bowl of buttered popcorn, and wait for the cue to take the stage for our audition.

100 Chronically Ill, Disabled, Depressed & Demented People Stuffed in a Bag

  By lonp | August 29, 2012 - 12:19 pm |
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by:  Martin Bayne – Journalist, Buddhist monk, MIT graduate, and well-known advocate for the aging; cofounder & CEO of New York Long-Term Care Brokers, one of the nation’s largest LTC insurance brokers, Martin developed Parkinsons disease at the height of his career and has spent more than a decade energetically advocating from a wheelchair while personally experiencing life in LTC facilities.  He knows whereof he speaks. (more…)

You can use fancy names – continuing care retirement community or adult congregate living facility – hire a landscape architect – use aroma therapy – even run full billboard ads showing octogenarians dancing the night away.

But as Anne Richards, former Governor of Texas, was fond of saying “You can put lipstick on a sow and call it Monique, but it’s still a pig.”

Institutional aging exists in America because we’re confused. We’re not quite sure how to balance our dramatic shifts in mortality and morbidity demographics, fractured nuclear family,  failed long-term care system and the distaste for our frail, incontinent elders. Additionally, there are quality of life considerations that parallel our dwindling reserves of religious faith. (There is an eerie silence in our churches and temples,  while casino blackjack tables operate 24/7)

Yet, you have to look closely to find the real “bad guys” in this story.  The anti-heroes are not always obvious.

It’s easy to point a finger at a greedy aging facility owner who pays his CNAs $8/hr and shout “Ah-Ha”, while the real culprit – the social and cultural stereotyping of an aging population- remains hidden.

After the passage of Medicare and Medicaid in the 60s, we thought we’d found the answer for the terminal end of a rapidly aging population: the skilled nursing facility( i.e. ‘nursing homes’). Here’s the recipe -  take one group of sick, depressed, demented, disabled, and near-the-end-of-their-life folks; put them all in a bag. Add enough psychotropics to keep the whole lot manageable and shake vigorously.

We thought this was a formula that would work.  It didn’t. It doesn’t. And it wont. Its time to take a step back, rethink the challenges an aging population presents and redesign a new terminal aging model.