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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.
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.
You may have read that FICO, the credit score people have used large data sets to draw a correlation between people’s credit scores and the likelihood that they will be compliant in taking their prescription medication. FICO says that the correlation is around 70% accurate. The upside of having this knowledge is the ability to predict which patients should receive e-mail reminders to take their medication, and thereby remain healthier and avoid a medical crisis.
This is all good assures FICO’s good twin. After all almost 25% of hospital emergency room visits are a result of medication errors and non-compliance. By reducing non-compliance, one can reduce emergency room visits and thereby save a ton of money. All true on its face; but now comes the murky part.
FICO’s data sets upon which they base their assumptions were gathered during a world-wide financial recession bordering on a depression. We know that when there is a choice between eating and medication, or rent and medication, or the car payment and medication – medication loses. Ergo, using data from this period will most likely enhance the perceived correlation between poor credit scores and medication compliance. This does not mean that the correlation is wrong, just not as robust.
But wait, we have not yet heard from the evil twin; now comes the scary part. Suppose I work for an insurance company. I know that people who are less likely to be compliant in taking medication are more likely to have higher medical bills. Would not a lower FICO medication score make our insurance company less enthusiastic about providing insurance to people with these lower scores?
Knowledge is power; power can be used for beneficial as well as destructive ends
by: Anne Montgomery, a Senior Policy Analyst for the Center for Elder Care and Advanced 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?
For some reason, many leaders in healthcare like to equate stuff in their lobby to person-centered care: player pianos, coffee for visitors, seating areas with plants. Leaders that were eager to tell me about how they are “doing” culture change have proudly presented each of these examples to me – Pathetic.
The greatest pianist, coffee or seating does not make up for the fact that most healthcare organizations deprive people of their dignity and individuality.
Extreme? Perhaps. True? Absolutely.
The idea of person-centered care is not new. It has a long history in various levels of healthcare. Yet somehow the concept of person-centered care still struggles for the respect that clinical outcomes, quality measures and financial results get.
But is what a person wants any less important than what a person needs?
Don Berwick, former CMS Administrator, describes himself as an extremist in his article on patient-centered. It is one of the best articles I have read on the subject. In it, Berwick addresses common objections that I often see.
One objection is, “What do we do if a person wants something crazy or foolish? In a training seminar that I recently conducted, a staff member asked, “Do people just get anything they want now?”
The answer is “Yes!”
On rare occasions a “No” may be necessary. BUT we shouldn’t make blanket policies that affect everyone based on one situation.
As Berwick writes, “…rare occasions make for very bad rules for the usual occasions.” He also addresses the fear that person-centered care will have a draining effect on staff members.
Take Action: Person-centered care goes beyond customer service and aesthetics. It asks, “What do you need and want?” It acts on the answer and then asks, “How could I do better?”
Inspire: Berwick shares some ways to bring patient-centered care alive:
Control – Give control over to patients, residents, and the loved ones they choose. Take over control rarely and only with permission.
Transparency – Share outcomes, processes, and errors freely. Apologize when things go wrong.
Individualization and customization – While the environment is important, the focus of culture change should be on creating systems that are adaptable to individuals.
Training – All staff should be equipped with the skills they need to support residents’ needs and wants.
What do YOU think? Is coffee in the lobby enough or should you say “yes” to everything a resident wants? Is the answer somewhere in the middle or is that a slippery slope back to mediocrity? Tell me here!
Extremely thankful for you reading, Denise
By: Carolyn McClanahan – Physician/Financial Planner/Forbes contributor discussing all things money and medicine
The 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.
- He has to see a lot of patients to earn his keep, which for the average gastroenterologist is a salary of about $330,000.
- 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.
- 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.
- 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.
- 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:
- 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.
- 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.
- 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.
- 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:
- Obamacare promotes the creation of patient centered medical homes, a move toward prevention and wellness, and rebuilding of our primary care system.
- 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.
- 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.
- 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.
by: Anthony Cirillo - CCAL board member and healthcare consultant and aging expert
There is a Taco Bell Super Bowl commercial in which a bunch of elderly folks get rowdy while the song “We Are Young” by a band called Fun plays in Spanish. It’s irreverent, but it is fun! The English lyrics read:
Tonight / We are young / So let’s set the world on fire / We can burn brighter / Than the sun.
On most days you probably don’t feel like you can set the world on fire. But caregiving doesn’t have to be a bad experience. Caregiving is an opportunity to give back and have a closer personal relationship with the person to whom you provide care.
Over 20 years of performing for elders in nursing homes and assisted living communities, I’ve learned a number of life lessons. One woman who was blind and in a wheelchair had a better quality of life — in a place we associate with death — than many I know on the “outside.”
I have observed eight traits of elders living a quality life that can teach us all something. In fact, I turned these lessons into a keynote presentation called “The Meaning of Life,” which I give for caregiving groups and long-term care professionals.
- Have purpose. Ruth Anne, a resident in a Charlotte nursing home, was president of the resident’s council, delivered mail, and never kept still. When I interviewed her for my book, Who Moved My Dentures?, she said she prayed to God every day for her purpose. I mean, wow! Do you know your purpose in life? If so, great — but understand that it will evolve and change over time, so watch out for the signs. You will not be a caregiver forever.
- Stay active. Why is my 91-year-old mom still getting around and driving my sister crazy? She went dancing three times a week up until her mid-eighties. My equally spry mother-in-law is in her early eighties, walks every day, and takes no medications. Put time aside on your calendar for fitness.
- Laugh every day. The residents I have the most fun with are those who kid around with me, like Esther, my designated heckler. Bring humor into your life and workplace. Listen to comedy. Watch something humorous. Buy a book on stand-up comedy. Open yourself up to fun.
- Learn something new. One of the groups I write about in my book calls itself The Raging Grannies, a protest group of elders who use song parodies. They involve other residents by having them help with costumes and songs. It keeps them young because their minds are constantly stimulated. As Jim Rohn said, “Formal education will get you a job. Self-education will get you rich.”
- Nurture friendships. The strong friendships that develop in assisted living communities are amazing. Seniors find that the social aspect of the community is life-sustaining. There are many studies on the value of friendship and socialization. If you are shy and reserved, try to step out of your comfort zone and talk to and meet new people. Be a good listener. Estranged from someone? Life is too short. Make amends.
- Have a great attitude. My friend Jean, a CCRC resident who has long passed, when first introduced to her new living arrangement saw it not with pain but with possibilities. This shy, widowed housewife embraced community life and came to all of my performances. The importance of a positive attitude has been beaten to death. But know this: Your attitude reflects on you, and you — yes you — have your own personal brand of attributes that others will use to define you.
- Be grateful and
- Be loving. We’ll put the last two together. The seniors I hang out with have unconditional love for people. But what really strikes me is how grateful they are for everything. Try this: Every day, be grateful for three things in your life. Keep a journal documenting one positive thing that has happened to you that day. Miracles are everywhere. When you are grateful, they show up.
Your health and well-being are important. Don’t sacrifice them as you care for a loved one. Pay attention to what you can learn from all of this. Your caregiving is a journey, and the rewards are the lessons you learn from paying attention to that journey.
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.
Remember being 10 years old, heading to Disneyland, (I grew up in Southern California so that’s my frame of reference – plug in your own favorite amusement park), feeling your heart race as you waited in line to get on the Matterhorn? As you get into your 50’s its hard to replicate those shots of exuberance and guilt free adrenaline, one way to approach that exhilaration for technology consumers is to head to the Consumer Electronics show in Las Vegas.
The show is a cacophony of technology innovations, solutions and guesses as to the future. And its insanely huge! I’m sure a lot of readers are familiar with the larger senior living provider conferences like Leading Age, AHCA and ALFA – in a good year upwards of 8,000 people will attend those shows. Try this on for size, at CES there are over 153,000 attendees and 3100 exhibitors! The overall floor space takes over approximately the size of 37 football fields – yikes! The techno guru of our company, Michael Gardner, spent 4 days at the show and had a pedometer strapped on to count his steps, final answer for his effort was 98979 steps (49.5 miles).
The show touches everything. All kinds of insane new car designs (be alert for driverless cars!), innovations in audio and video technology, crazy robotics, new types of sensors for the home, virtual interactive gaming devices, preparing for the digital home of the future. And as you wander from booth to booth you meet everyone from the savvy sophisticated executives from world class conglomerates (Samsung, Sony, Phillips, Ford, etc) to the fledging entrepreneurs from remote places in China trying to change the world with their one idea. It’s a Kiplingesque integration of marketing sophistication side by side with the hucksters you meet at a state fair. The fact that its in Vegas only adds to the absurdity of the experience, whatever decadence you choose to partake in on the show floor is matched by the decadence of your choosing at 3 am on the Vegas strip!
My shtick is always leaning towards finding how this paradise of technology and innovation can meander its way into senior living, and aging in general. Part of the solutions are obvious, and the marketplace is catching up with the need. Integrating sensors into clothing to monitor vitals, smart homes of the future that learn an individual’s needs and send the appropriate signals wirelessly to other devices, integrating health and wellness into a person’s smart phone, etc, etc. It is exciting to see that common sense type of mindset beginning to work its way into the mainstream technology landscape. I always enjoy, however, finding nuggets of technology that 100% contribute to the quality of the older person’s (or disabled person’s) quality of life.
Two things I fell in love with, and we’ll integrate into our own product pending testing results, are inexpensive, engaging, life changing devices. The first is a baseball cap, yes, a baseball cap! What’s so special about it? You put the hat on, and a small, undetectable wireless speaker embedded in the hat rests alongside your skull. Just wear your hat, and the sound from your phone or PC is conducted directly into your inner ear through vibration. Our CIO, Lili Dwight, has not had hearing in one of her ears for almost ten years and she texted me from DIA last week (with her hat on) saying for the first time in the last decade she could listen to music stereophonically. And the guy hawking it was awesome – Mike Freeman, the product developer. (www.maxvirtual.com). He was wildly exuberant, hands flailing away left and right as he tried to revolutionize the world one ear at a time. The other device was a musical instrument called Beamz, it’s a 3 pronged instrument about the size of a 20” monitor where when you put your hands between the prongs of the device you break a laser beam that plays a specific musical instrument. A musical neophyte like me can be transformed into a concert pianist or a jazz guitarist depending on the background music you can seamlessly select. And it runs right off of your PC. What I love about it from our company’s perspective is that it is just as appropriate for a person far down the dementia path as it is for someone fiercely independent at 93, no skill necessary to apply!
I like to have my ideas verified by industry experts, so the week after CES I took both of these devices with me to the headquarters of Brookdale Senior Living in Tennessee. To my delight, they got it! Their associates enjoyed playing with the musical instrument, and fundamentally saw the benefit of the hat for the thousands of residents they serve with varying degrees of hearing loss. Their executives care about this stuff! You should hear one of the their executive VP’s (Todd Kaestner) talk in detail about ambient decibels and background noises and how that can impact a residents quality of life – I can’t keep up! It’s the perfect storm to find organizations that look at technology as something above and beyond medical records and pill dispensing.
Another thing I like about CES is the mindset of commercialization and the appropriate price points. Over the years I’ve attending dozens of conferences dealing with various types of adaptive technology and software / hardware solutions. The problem is the price points, it’s great to see technologies that can change people’s lives but if no one can afford them what’s the point. It’s a tough line to walk but the very definition of “consumer” electronics means you’re trying to reach the masses, that means the price points matter. The baseball cap, for example, will cost about $50 – $60 dollars. Think about that for next year’s Christmas gift for Grandpa!
So my recommendation for any of you technophiles, or even technophobes, is to get CES on your bucket list. It’s a no lose proposition. You’ll find things that benefit yourself, benefit the elders many of your serve, benefit people you love, whether it be your grandkids or your mother in law. And you can instantly become hip to your own kids. Next year I’m bringing my 20 year old son JP and my 18 year old son Nathan with me to the event, they’ll be able to explain to me all of the things I can’t figure out. The world is changing whether we like it or not, CES is a way to hop on the train and see which way the world is turning. All that’s required to attend is a few hundred dollars of cash and your imagination.
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.
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