Person-Centered Perspective in Senior Care

JP-ExpertJackie Pinkowitz, M.Ed., and Chair of the CCAL, discussed her experience with person-centered care with A Place for Mom, and writes about how utilizing a person-centered approach is changing the senior care industry.

Like many of you, I have been a loving family caregiver for four elder parents, each of whom had individual needs, which changed over time. I spent much time and energy seeking quality options across the spectrum of senior living: from independent living apartments, to assisted living communities, to special Alzheimer’s communities, and finally to long-term skilled nursing facilities.

As Chair of CCAL, I hope that you will adopt a person-centered perspective as you seek senior living options for yourself or your loved ones.
Such a perspective requires an understanding that person-centered care is a holistic approach that focuses on enhancing all the dimensions of one’s health and well-being, which includes:
•Physical health
•Intellectual being
•Social and emotional wellness
•Creative being
•Spiritual being

Person-centered living encompasses care, services and meaningful engagement that are planned according to residents’ personal preferences, values and goals. This approach honors each senior’s dignity, choice, self-determination and individuality, which enhances quality of life and quality of care for seniors.
What Person-Centered Care Means for Seniors
From the seniors’ perspective, this type of care includes the following principles and practices:
•“Nothing about me, without me.”
•I have the right to determine how best to meet my needs.
•My care should optimize my physical and psychosocial well-being.
•My care must be nurturing, empowering and respectful.
•It must include me, my family and care team in decision-making.

What Matters Most: Positive Emotional Connections and Experiences

When seniors offer their perspective on quality of care and services, they most often describe how the care or service was experienced by them. Although seniors would probably say, “It’s all about providing positive emotional connections and taking a new view of me,” I believe they are really saying something else. They are saying, “See me for the person I truly am. See me for all the things I believe in, care about, and love to do. Don’t diminish my personhood just because I need some assistance with activities of daily living.”
It’s all about relationships and valuing the uniqueness of each resident.

How Person-Centered Care Affects Memory Care

When applied in memory care settings, all of the above-mentioned values, relationships, experiences and practices are enhancing the lives of individuals with dementia and other cognitive issues.
How person-centered memory care enhances dementia patients’ lives, and how to create a person-centered memory care setting can be found on CCAL’s website.

Person-Center Care Slow to Evolve in the U.S.

In 2001, the Institute of Medicine’s (IOM) report titled “Crossing the Quality Chasm” called for a redesign of our nation’s healthcare system, and described healthcare in America as impersonal and fragmented. The IOM 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 one.

In the decade following the IOM report, however, little national progress had been made to shift to making person-centeredness the standard of healthcare and long-term services and supports (LTSS). The Affordable Care Act (ACA) of 2010 helps to reinforce the need for change by requiring that services funded by the Centers for Medicare and Medicaid Services be provided in a person-centered manner.

A growing body of empirical evidence indicates that person-centered practices are more pleasant to experience, help to optimize health and well-being outcomes, and result in higher satisfaction.
According to Jason A. Wolf, PhD, and Executive Director of the Beryl Institute, “The healthcare experience… is based on every interaction a patient and/or their family have on the care journey and is ultimately measured by the very perceptions those individuals have of their experience.”
Excerpted from: Dementia Care: The Quality Chasm, K. Love and J. Pinkowitz (eds). Falls Church, VA. National Dementia Initiative, CCAL

Seeking Person-Centered Living Communities

As you visit different communities, I encourage you to spend time at the community and see how comfortable you and your loved ones feel being there. Ask yourselves if you feel the following principles are being practiced:
•Every person is provided a choice, autonomy and independence, and is treated with dignity, respect and privacy.
•Services are provided in a respectful way that also includes their family and larger caregiving and support network.
•People have the right to determine their 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.

Moving into a new community is a major transition for the prospective resident and your entire family, so I urge you to drop by the community at different times of the day and week. Chat informally with residents and staff. Are they friendly and positive about the community? Look for life enrichment within the community. Does it feel as if they are honoring the residents’ life experiences, choices and routines in the natural rhythms of daily living? These are the person-centered elements that contribute to residents’ and families’ sense of belonging and well-being.

Wishing you much success in seeking person-centered senior living!

Using Touch to Foster Well-Being

by: Karen Love, Founder & Treasurer CCAL; Principal, Fit Interactive & Pathways to Care
ReikiTouch is one of the most basic elements of human development. Since ancient times and throughout the world, people have used touch as a healing technique. The word ‘touch’ is even used in our everyday language to convey a feeling. We say things like “that was so touching” to mean we are emotionally moved by something.

Therapeutic Touch is a term used to describe intentional and compassionate touch. It has the power to ease physical and emotional discomfort and increase feelings of calmness, relation, and a sense of well-being.

Therapeutic Touch uses different hand techniques depending on what part of the body is receiving it. Both hands are lightly and gently placed on various parts of the clothed body for five seconds or more so that the person can feel the warmth from the hands. Therapeutic Touch techniques are simple to learn and easy to use. The more practice one gets, the better their skills become.

Besides the physical benefits to ease stiffness, joint pain, and other physical discomforts, Therapeutic Touch can convey caring, affection, trust and an emotional closeness and connection that is especially important for people who have become socially isolated.

Reiki is a specialized type of healing touch. It is a natural method of hands-on healing that channels Universal life energy by the Reiki practitioner to the receiver’s body so their body can use the energy for healing and restoration of well-being. According to the American Hospital Association, 15% of American hospitals today offer Reiki as part of their services.

I participated in a research study funded under the Alzheimer’s Disease Supportive Services Program by the U.S. Administration on Aging that studied the use of Therapeutic Touch and Reiki by over 200 home care aides in the District of Columbia during 2011 to 2013. One of the findings from the study was the benefits experienced by the practitioners themselves. Applying Therapeutic Touch or Reiki instilled a sense of calming and well-being in them as well. (Click here for a pocket guide about Therapeutic Touch and Reiki.)

A Soulful, Heart-Based Reinvention of Assisted Living

Martin Bayneby Martin Bayne: Martin has been an assisted living resident for more than 10 years, and credits many of his ideas to his experiences as a Zen Buddhist monk and an MIT scholar. His website is TheVoice0fAgingBoomers.com; his literary journal—showcasing authors ages 60 and older—can be found at TheFeatheredFlounder.com.

Imagine you are 70, your spouse has just died and your children have decided it’s no longer safe or prudent for you to live alone. It’s your worst nightmare—complete with memories of the insecurities and trepidation felt in the first days of school, but this time it’s an assisted living facility, and, like you, the other “kids” are in their 70s, 80s and 90s. For many assisted living residents, the first days and weeks are the most traumatic. Many arrive in a surreal haze; some just days after burying their spouse; others following years of steady losses to a chronic illness like Parkinson’s. And then there are the legions of poor souls with cognitive disorders, who neither understand why they’re sleeping in a different bed nor know who just served them breakfast. And every resident is susceptible to the ambient despair that comes with the recognition of their community’s unprecedented levels of dementia, disability, depression and death. (more…)

Rethinking Assisted Living At age 52, I entered an assisted living facility because I had young-onset Parkinson’s disease. But my knowledge and experience of long-term care go beyond living in an assisted living facility. As the publisher from 1993 to 2001 of the website, MrLTC.com, I have had the opportunity to interview Hillary Clinton, Jimmy Carter, Clint Eastwood and a number of other prominent Americans about long-term care.

For many assisted living residents, the first days and weeks of residency are the most traumatic.

After nearly a decade as an assisted living resident, I decided it was time to create the next generation of assisted living communities. I developed a program called Therapeutic Assisted Living, which I believe will change the way Americans think about institutional aging. My vision of Therapeutic Assisted Living is made up of two immutable truths, eight principles and five interventions.

A New Vision: the two immutable truths are that aging and death are natural attributes of being human, and love and compassion are the most powerful forces in the universe. The eight principles of Therapeutic Assisted Living, which originated in my practice as a Zen Buddhist monk, are that with stillness, we lay the foundation; with courage, we move forward—despite our fear; with forgiveness, we discover true freedom; with insight, we accept the change of life’s seasons; with gratitude, we honor our ancestors; with tenderness, we turn the stream of com-passion within; with faith, we learn surrender; with mindfulness, we do just this thing, now.

The five interventions make up a set of instructions, or an operational guide, for a Therapeutic Assisted Living community. First, there should be a Welcoming Committee—each new resident should be greeted by a group of existing residents. The interchange is simple, yet the rewards are often profound for new residents. There should be a Peer Support Group, a weekly, residents-only meeting. This provides a safe, supportive environment for honest exchange between community members on myriad issues. This group is the heart of the community, and its objective—purposeful living—the soul. A Crisis Team, made up of residents, should be available to other residents around the clock. This team is composed of three or four residents who agree to be available at all times for any resident who asks for their help. A Crisis Team member is not a therapist, psychologist or professional healer, but simply some-one willing to listen, comfort and demonstrate compassion to a resident in trauma. To anyone who has ever suffered a panic attack at 3:00am, and just needed a kind and reassuring voice to walk them through the rough spots—not an often-ambivalent ambulance crew or 10 hours in an emergency room—this concept needs no explanation.

Community Volunteering is a key component as volunteering says to the world, “I am worthwhile; a fellow human being with something to offer, regardless of my age.”

A Peer Support Group is the heart of the community, and its objective—purposeful living—the soul.

And finally, there should be Legacy When a resident dies, the community should come together to honor and pay respect to one of their own as the fallen resident embarks on the Great Adventure. Therapeutic Assisted Living says “dying is completely safe,” and if all goes well, the residents can expect to be greeted by another Welcoming Committee, albeit one with a bit more spirit.

Making My Blood Boil: Frontline Expose on Assisted Living

by: Larry Minnix, President & CEO LeadingAge

Larry Minnix.bmpIf you did not see the Frontline exposé about an assisted-living company, it is a must-see for boards of directors, senior management, and staff of our organizations. If you are like me, you will feel powerful, mixed emotions about the Frontline PBS episode. You will feel horrified about the human tragedy that is portrayed.

You will be angry because you know that many people watching — and beyond — will assume that all assisted living is similar to the Frontline depiction. You will feel defensive of good providers who do not deserve to be painted with the same brush that the company in question is painted. You will, initially, be angry with the media for doing a hatchet job that doesn’t portray balance. You also may have the impulse to blame policymakers and regulators for making the services program too complicated or too lax. You may even blame various associations for allowing bad actors to function in the service-delivery world. After all, nursing homes have been under this kind of microscope for years.

Who Is Responsible?

But, who is really responsible for such stories, and what do WE plan to do about it? Here is my take:

The corporate executives interviewed by Frontline blamed residents with Alzheimer’s disease for unpredictable behavior. They blamed staff for being human and making mistakes. They even blamed families for understanding the negotiated risk of putting a loved one in an assisted living facility instead of placement in the “dreaded nursing home.” They blamed everyone but themselves, except for issuing the now common “we’re not a perfect company” message too often used in similar situations of corporate scandal.

But, the thing that made my blood boil the most is that what happened to these residents should not happen to anyone! And no one should be treated the way that these employees were treated! The core failing of a company with multiple problems, violations of state regulations, and lawsuits is a corporate culture based on fundamentally poor values. Laced throughout all of the interviews by former employees and family members was a hidden value of greed over compassion and competence, covered by layers of sweet icing of the trappings of nice facilities.

The Achilles’ heel of assisted living is that those who are in it for the money know how to sell sizzle but offer very little steak. Long-term care leaders have, for years, fretted over this potential. Many of us have complained that assisted living is admitting and keeping residents that they can’t care for. These facilities play on the public psychology that families will gravitate to the nice wall sconces, winding staircases, secure gardens, and public-relations trained admissions staff who know that, as one investor-owned chain marketing person told a friend of mine, “if you get them to cry, you know they will buy.”

Assisted Living Has the Right Ideas

Assisted living is an important program in the buffet of options that should be made available to seniors and their families. It has all the right ideas:
•Familiar and homelike setting.
•A culture of hospitality.
•A program and environment that appeals to the interests and strengths of residents who have impairments.
•A supportive approach to families.
•Flexibility to design services around the needs and interests of residents.

Assisted living has also enjoyed a relatively regulation-free hand to prove that this sector can self-govern using market-based principles without heavy-handed government intervention. LeadingAge, and our colleague associations in collaboration with consumer groups, have worked over a decade to help define standards that could follow in overseeing assisted living at the local level.

Many states have recognized the need for additional standards and training for dementia care, including Illinois, Minnesota, Montana, New York, Oregon and Washington. National groups, such as the Center for Excellence in Assisted Living (CEAL), have been working on best practices in dementia care in assisted living.

Assisted living represents the chance to show that professional and sector self responsibility can be effective — a state of public trust that nursing homes, even with big improvements in quality, do not yet enjoy.

Let us hope that the Frontline exposé has not irreparably derailed that privilege. Unfortunately, regulation is often driven by bad actors who take advantage of the circumstances in which they find themselves. In this case, we cannot let that happen!

So here’s what we need to do…and stand for!

Assisted Living Providers: Make Sure Your House is in Order

First, we need to make sure our house is in order. Take the Frontline video and ask yourself these questions:
•What are our admissions and discharge policies and procedures?
•What are our staffing levels?
•What kind of training and development program do we have for direct-care people?
•What are our quality standards and how do we know we’re achieving them?
•To whom are we accountable for what we deliver, and how does the public know our values and results?

If you find yourself feeling or discussing the tension between filling beds and delivering good quality, you need to have a serious conversation with your board of directors and senior management staff. You should do this because Frontline has exposed that when greed trumps compassion, bad things happen and residents and many others get hurt.

Evaluate Your Culture

Second, evaluate your culture. Indicators of healthy cultures begin with staffing.

Yes, all of our research points to the fact that staffing is the best proxy for quality in nursing homes and assisted living. In fact, the most trusted and supported staff in your organization should be the direct-care people on the night shift between Saturday evening and Sunday morning. Here are some questions to ask:
•When was the last time you checked in with those people to see how things are going?
•When was the last time you made rounds on evenings and nights or weekends?
•Do you have staff satisfaction surveys as well as resident and family satisfaction surveys? Do you act on the results?
•Do you disclose those results to your board and to the public?
•Do you have a culture of ongoing learning opportunities in the arena of contemporary clinical care as well as the often difficult dementia care arena?

Quality-Improvement Programs

Third, do you have a continuous quality improvement program in place beyond the cosmetics of it? Any crafty manager can produce numbers. Not everyone knows how to produce quality and how to measure it.

In less-supervised settings like assisted living, continuous quality improvement is even more critical because of fewer leadership and supervisory people available everyday, 24/7. Does your continuous quality improvement culture include non-punitive, anonymous mechanisms to report incidents or negative dynamics?

Public Oversight

Fourth, are you active with policymakers, regulators, and consumer groups to make sure that the proper, transparent public oversight is in place. It is not sufficient to defend what we do, however good we may be.

We must go on offense about constantly improving standards that can be publicly disclosed. Are you advocating for policies in your state that assure disclosure about owners and access to them — even stockholders.

In the not-for-profit sector, ownership accountability is local and transparent. With publicly traded or privately owned organizations, the public often does not know who’s behind the curtain.

Are you advocating for mechanisms that oust ineffective leaders and management — and even governing boards and owners?

We have been working with the Centers for Medicare and Medicaid Services (CMS) on how to deal with chronically bad performing nursing homes. The long-standing tradition has been to punish them, fine the owners, or close them down.

In recent years, we have suggested that punishing residents, families, and employees by closing down a bad actor is punishing the wrong people. Instead, we believe that managers and owners should be relieved of their responsibilities and replaced with competent and compassionate governance and leadership.

You see, the Frontline exposé was not generated by the fault of the disease, the residents and families who cope with it, the employees who try to deliver care in a high-pressure situation, or nosy media or hungry lawyers. No, the Frontline exposé results from a failure of leadership. And, it is our responsibility to advocate for corporate structures that are driven first by quality, which should result in business success whether you are a not-for-profit or a for-profit provider.

In the next few days, the Frontline story will develop broader public-relations legs — or not. It could result in the next OBRA 87 — or the flames could die down quickly. In either case, we cannot treat the Frontline exposé as a temporary public-relations crisis, because we all know that assisted living is an accident waiting to happen if we do not take responsibility aggressively for quality and what should happen to people who don’t produce it.

No one should be subjected to what we saw on Frontline. Quality should be an automatic public expectation. Let’s do something about it. Organizations like the one in the Frontline episode make my blood boil — and they should make your blood boil as well!

But, if we don’t address the underlying issues involved, we will have no one to blame but ourselves

Music and Memory

henry-listens.bmp
Dan Cohen, MSW, is the founding Executive Director of Music & Memory. He combines an extensive background in high tech training, corporate sales and software applications with social work, specializing in vocational rehabilitation and community service organizing. A former Consultant/Trainer for the U.S. Department of Education, he helped colleges, universities and communities nationwide to apply best practices in community service learning programs.

No one wants to end up alone and isolated in a nursing home. It’s hard enough to lose someone you love to Alzheimer’s or other forms of dementia. It’s terrifying to think you could end up there yourself, someday.

But there’s reason to hope for a better life as we age. At Music & Memory, we help elders in care facilities suffering from a wide range of cognitive and physical challenges find renewed meaning and connection in their lives through the gift of personalized music.

Beloved Music Can Renew Lives Lost to Dementia. Our approach is simple, elegant and effective: We train elder care professionals how to set up personalized music playlists, delivered on iPods and other digital devices, for those in their care. These musical favorites tap deep memories not lost to dementia and can bring residents and clients back to life, enabling them to feel like themselves again, to converse, socialize and stay present.

Music & Memory’s work is rooted in extensive neuroscience research. The results can be nothing short of miraculous.

CLICK HERE to meet Henry, who suffered from dementia for a decade and barely said a word to anyone—until Music & Memory set up an iPod program at his nursing home:

The Therapeutic Benefits of Personalized Music

Henry’s remarkable re-awakening is not unique. In more than 140 Certified Music & Memory Care Facilities throughout the U.S. and Canada, we’ve helped thousands of residents struggling from dementia and other chronic cognitive and physical impairments reconnect with family, friends and caregivers through our personalized digital music program.

Our ongoing research and evaluation of Music & Memory’s work in elder care facilities shows consistent results:
Residents are happier and more social.
Relationships among staff, residents and family deepen.
Everyone benefits from a calmer, more supportive social environment.
Staff regain valuable time previously lost to behavior management issues.

There is growing evidence that a personalized music program gives professionals one more tool in their effort to reduce reliance on anti-psychotic medications.

When Seeing the Same Physician, Highly Activated Patients Have Better Care Experiences Than Less Activated Patients

Authors: Jessica Greene, Judith H. Hibbard, Rebecca Sacks, and Valerie Overton
Journal: Health Affairs, July 2013 32(7):1295–1305
Jessica-Greene
Synopsis:
Patients who have the knowledge, skills, and confidence to manage their health and health care report better health care experiences than patients with lower levels of “activation” who see the same clinicians. Findings from this Commonwealth Fund–supported study suggest that care experiences are transactional―shaped by providers and patients alike.

The Issue
Patients’ ratings of their care experiences, an important part of quality improvement efforts, are now increasingly being linked to payment, with providers receiving higher compensation when their patients report better experiences. Although a number of patient characteristics can influence these assessments, many—like age, race, income, education, language—are for the most part unchangeable and can be adjusted for in patient experience ratings. One characteristic linked to care experiences that can be changed is patient activation: patients’ understanding of their role in the care process, and their knowledge, skill, and confidence in managing their health and health care. Researchers examined patient data from an integrated health system in Minnesota to answer the following questions: Do more-activated patients report better care experiences than less-activated patients? Are more-activated patients more likely to go to primary care providers who are more patient-centric? And, do more-activated patients report better care experiences than less-activated patients when seeing the same provider?

Key Findings
◾When seeing the same physician, patients at higher levels of activation had more positive experiences than patients at lower levels—those at the highest level of activation (level 4) rated their primary care providers 10 percent to 14 percent higher than did patients at the lowest level (level 1).
◾The difference in patient care experience was not driven by more-activated patients seeking out more patient-centric primary care providers. Rather, highly activated patients reported better care experiences than less-activated patients when seeing the same primary care provider.

Addressing the Problem
“The evidence suggests that what is happening is not that patients who are more activated are selecting more patient-centric primary care providers or that some providers have increased their patients’ activation scores,” the authors write. Instead, the results, they say, suggest that patients who are more activated are better able to obtain satisfying care experiences with any primary care provider. While it is likely that highly activated patients are proactive in getting the care they need, providers may also respond differently to more- or less-activated patients. Patients who are less activated may be more passive with their providers, who may respond by being less collaborative.

These findings suggest that care experiences are transactional, shaped by providers as well as patients. Improving patients’ experiences, therefore, should focus not just on providers but on helping patients to elicit what they need from their providers.

About the Study
The researchers used patient activation data, which they were able to link back to primary care providers, from Fairview Health Services, an integrated health system in Minnesota. In addition, Fairview surveyed a sample of its patients in 2010 about their care experiences with their providers. A total of 5,002 patients who saw 49 providers were included in the analysis.

The Bottom Line
Even when seeing the same clinician, highly activated patients—those who have the knowledge, skills, and confidence to manage their health and health care—had more positive health care experiences than less-activated patients. Successful strategies for improving patient experience will likely be ones that help patients get what they need from their health care providers.
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Advances in Person-Centered Dementia Care

expert-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: 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: 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

Caring.Com interview with Jackie Pinkowitz, Board Chair, CCAL

CCAL Logo

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.