Category Archives: long-term care

baby boomers, Book Reviews and News, culture change, elder care, long-term care, nursing homes

You’re In a Nursing Home. Now What?

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I’m a big believer in the benefits of person-centered culture change in long-term care settings like nursing homes, where the aim is to focus more on the feeling of “home” than on “nursing.” According to the Eden Alternative , a nonprofit organization that promotes, supports and teaches about person-centered culture change, currently there are 190 skilled nursing facilities on its registry, 45 percent owned and operated by for-profit companies and 55 percent by nonprofit, county and government sponsors.

But these homes still represent a small fraction of the total number of skilled nursing facilities in the U.S. What if you, or someone you love, must make the transition to a nursing home now?

Fortunately, many excellent resources are available to guide you in making your choice. Deeply buried in Medicare’s Nursing Home Compare website, for example, is an excellent 56-page booklet called “Your Guide to Choosing a Nursing Home or Other Long-Term Care.” Fewer resources are available to guide you about how to live well once you’re there, however.

That’s where Eleanor Feldman Barbera, PhD, comes in. A seasoned nursing home psychologist, “Dr. El,” as she calls herself on her website and blog, says that her goal is “to make long-term care a place I’d want to live when it’s my turn.” She is called in to work with residents if they are causing trouble – e.g., arguing with staff members or other residents, or refusing to take medications, or participating in rehab, or are depressed.

Her approach is one of empathy, pragmatism and humor. Sometimes it’s a matter of residents adjusting to the reality of not being able to do everything for themselves, she pointed out.

Generally, she advises having patience and reasonable expectations. “Come in with an open mind,” she said. “Try to partner with the team as much as possible.” While in person-centered homes your schedule revolves around you, your preferences and interests, that is not the case in conventional facilities, where schedules are set by the institution. So here’s one hint: be cognizant of the home’s schedule and when you need assistance, try to seek it before shift change times, when aides and nursing staff are particularly busy.

There’s more advice in Dr. Barbera’s book, “The Savvy Resident’s Guide: Everything You Wanted to Know About Your Nursing Home Stay But Were Afraid to Ask.”
In more than 20 years of doing this work, Dr. Barbera told me. she’s seen little movement toward culture change in long-term settings, although now people seem to at least be aware of the concept. “It needs leadership at the top that believes in it,” she said. “It needs a constant push in that direction.”

One thing that might spur change is the sheer size of the aging baby boomer generation. In Dr. Barbera’s view, boomers are thinking differently about their own late life prospects. Generally, she said, they demand more service, have higher expectations, are more litigious and feel freer to speak out when they perceive something happening that isn’t right. Perhaps they will want co-habitation with other elders, or inviting college students to live with them, she said.

Or, perhaps knowing about the existence of person-centered care alternatives, they will begin to insist that conventional nursing home operators begin to embrace its principles.

To find a long-term care facility near you, go to the Eden Alternative Registry

And if you want to get a better sense of how a nursing home works when it embraces person-centered culture change, do take the time to watch this 22-minute video, Perham: Welcome Home. Located in Minnesota, the home includes six “households” of 16 residents each.

baby boomers, elder care, long-term care

Can We Aim to Stay Forever Young?

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May being Older Americans Month,two recent stories caught my eye for very different, but related, reasons. The first told the story of Ida Keeling, a 100-year-old woman who just set a new world record for the 100-meter dash in her age-80-and-up category.

freedom-307791_1280Who could not feel deeply impressed and inspired, reading about how she overcame struggles that might have crushed the fainter-of-heart, and how she discovered renewed pleasure in fitness and competition? Who could not watch the video of her sprinting across the finish line at the Penn Relays in Philadelphia and not think, now there is something to aspire to? If not the actual running part, then certainly in pursuing another endeavor of our own.

And then there was the Wall Street Journal story, about how people from all over the globe have tracked down Nir Barzilai, director of the Institute for Aging Research at the Albert Einstein College of Medicine, to volunteer to be part of a study that Dr. Barzilai and his colleagues are working on – even though patient recruitment is still a year away, reporter Jennifer Levitz reported.

Why are they clamoring to reach Dr. Barzilai? Because the planned study will use the generic drug metformin to see if it can delay or prevent dreaded illnesses of old age, including heart disease, cancer and dementia. Gerontologists at 14 aging centers around the U.S. will follow 3,000 seniors for six years, half of whom would get the drug, with the others receiving a placebo.

Levitz interviewed a number of these would-be volunteers and discovered that they were, uniformly, feeling well and living very active lives and feared a future of frailty and decline. “It’s not so much a fear of dying, it’s a fear of living in pain and agony and being a burden to everyone else and my wife and so forth,” Bill Thygerson, 70, told Levitz.

These two stories struck me because they both seemed to personify our never-ending quest for youthfulness and vitality. Living the robust life, fully and independently. Isn’t that what we’re all aiming for? I’m as prone as the next aging boomer for valuing that. I don’t feel “old” and like most of my peers, I keep revising my idea of the very definition of the word “old.”

But the fact is, 60-ish isn’t the new 40. Or 50. So for me, these stories prompted a reaction of “Yes, but…” We all can’t be Ida Keeling. In reality, all it takes is just a little blip in the flow of our days, just a hiccup in our active and independent lives, to remind us that sometimes we have to take a pause and accept a little help. And looking ahead, many of us will need more than a little help to ease our days whether we remain in our homes or not.

That’s why I found this interview with Ai-jen Poo so refreshing. She is the director of the National Domestic Workers Alliance, co-director of the Caring Across Generations campaign and author of The Age of Dignity: Preparing for the Elder Boom in a Changing America. Right now several states are experiencing a shortage of home health and personal care aides. At the same time, those jobs are among the lowest paid and least valued in the country. So it’s up to all of us to begin talking about what we’ll need to live as well as possible in years to come and, equally important, figuring out how to value and train these workers better and best to pay for it all. Let’s remember that while we’re busy looking, feeling and acting forever young.

Advance Care Planning, Book Reviews and News, elder care, long-term care, palliative care

When Less is More for Elders

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curingmedicarecover2 Sometimes Andy Lazris is not popular with the adult children of the very old people he sees in his practice as an internist and geriatrician as well as in his role as medical director at assisted living and skilled nursing facilities. Why? Because his is a “less is more” approach to care for elders who typically live with multiple chronic conditions. He believes in fewer diagnostic tests, less clinging to the orthodoxy of “ideal” numbers gauging, for example, glucose, blood pressure and cholesterol. His focus is on helping his patients live a better life, and he favors better nutrition, more physical activity and social engagement. He also has a deep appreciation of the fact that aging, decline – mortality itself — are inevitable facts of life.

That approach is hard for caregivers to accept sometimes, particularly when we are all bombarded by news or advertisements for near miraculous results offered by new drugs and leading-edge treatments and surgical procedures. So off they may go to medical specialists whose approach may be wholly different, but not necessarily better and often far worse in terms of the elder’s quality of life.

Ironically, Medicare is at the heart of the disconnect between the kind of care elders mostly want and what they get – over-testing, over-treatment and over-medication. In its pursuit of quality and thoroughness in elder care, Dr. Lazris says, Medicare rewards aggressive measures by paying for tests, treatments and procedures.

Dr. Lazris explores the many implications of Medicare policies in a new book, “Curing Medicare,” to be published this May by Cornell University Press. Through stories about patients and his own challenges in dealing with the health care system, he shows how these policies often achieve the precise opposite of what they were intended to do.

My own view is that as baby boomers age over the next decade or two, Medicare policies dealing specifically with palliative and hospice care will need a radical overhaul. So I was glad to have had the opportunity to talk recently with Dr. Lazris about his book. His aim is to educate the patients and family members who are keenly interested in how our health system works.

He is hoping that readers will use the information to foster conversations with their doctors. He doubts that this will help fix the health care system, but, he said, “Do it on a small scale. Advocate for yourself, on an individual level.”

An outstanding discussion in the book addresses the differences between “absolute risk” and “relative risk” in assessing various treatment options, a subject Dr. Lazris told me he talks “incessantly” about in public speaking engagements. In 2007, Erik Rifkin, PhD, and Edward J. Bouwer, PhD, wrote a book called “The Illusion of Certainty: Health Benefits and Risks,” in which they present the elegant “Risk Characterization Theater,” a graphic of a hypothetical 1,000-seat theater, to explain the difference between absolute and relative risk. You can learn about it here. The graphic reprises its role in “Curing Medicare.”

Misunderstanding the difference between the two helps to explain the tremendous overuse, in Dr. Lazris’ view, of the blood-thinning drug Coumadin, for example. And in a recent blog post, Dr. Lazris applied the Risk Characterization Theater” to analyze recent findings about the potential risks of proton pump inhibitors – drugs like Prilosec – related to chronic kidney disease.

Published studies, he said, are all about relative risk; adding that physicians don’t know enough about that. But when he explains it to patients even in their nineties, they are “quite sophisticated in figuring things out.”

What would Medicare reform look like to Dr. Lazris? It would “put power in the hands of well informed patients who can control the course of their care.” In short, it would promote individualized care based on patient preference and provide medical interventions shown to be beneficial to the individuals being treated. It would be cost effective. It would give patients choices to maximize patient satisfaction, as well as enhance the doctor-patient relationship.

The bottom line, he writes, is that “the focus of care is to help patients live a better life.”

If your appetite for not-so-arcane medical information has been whetted, visit http://www.thennt.com/home-nnt. NNT stands for “number needed to treat” patients to result in a benefit to one person. A group of physicians have developed a framework and rating system to evaluate therapies based on their patient-important benefits and harms as well as a system to evaluate diagnostics by patient sign, symptom, lab test or study. A lot of this is technical, of course, but the colors used are not: Green indicates that the benefits outweigh the harms, while Yellow indicates that benefits are unclear. Red indicates no benefits and Black indicates that harms outweigh the benefits.

To learn more about over-treatment, visit the Lown Institute’s website. It also includes five questions to ask your physician about a recommended test, medication or procedure.

Advance Care Planning, elder care, long-term care

Dazed & Confused at the Warehouse

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The Costco in our area recently shuttered its long-standing warehouse store and opened a brand-new, bright and shiny and much larger one a few miles away. Eager to see what the new store had to offer (and lured by the prospect of a free roasted chicken), my husband and I made our first visit.

Once inside, it was simply…overwhelming. First, the sheer enormity of the place. It’s hard to visualize what 148,000 square feet of space actually looks like, until you’ve actually sprinted from one end of the store to another (in this case, to pick up an item I’d forgotten, while my husband waited in line with our cart.) There were yet more endless aisles than there had been in the old store, with unreachable goods stacked up to the ceiling. I barely knew where to find anything in the old store, but the new one was even more of a mystery. There was no way to figure out the logic (or lack of it) behind what products were located where. There was no one to guide us; what staff members we saw were absorbed in their own tasks.

So, in short, I felt lost, confused, intimidated, turned off and discouraged.

And it made me think: maybe this is a medical metaphor. Maybe this must be how too many patients and caregivers feel when they’re suddenly thrust into the health care system to deal with serious illness or a medical crisis. The hospital setting alone can be jarring and intimidating. In a crisis, patients (or their caregivers, if patients aren’t in a position to speak for themselves), must make decisions about treatment and care fairly quickly.

Much has been written about how shared health care decision-making (by patient and physician) has come to replace the old paternalistic model in which physicians mostly made decisions for you. But the fact is, particularly in a crisis, there is not an even playing field between you and your medical team. The team has the advantage of having far more knowledge and experience with your condition than you, and unless the team includes gifted communicators, that puts you at a disadvantage.

So what can you do to avoid becoming dazed, confused and fearful about making harmful choices in a medical setting? A little preparation, while you’re in good health, can help. Here are just two of many useful sources:

Recognizing that patients need better information about what care they truly need, Consumer Reports and the American Board of Internal Medicine (ABIM) Foundation have developed the Choosing Wisely® website (http://www.choosingwisely.org/patient-resources/) which aims help consumers choose care that is supported by evidence; doesn’t duplicate tests or procedures already received; and is truly necessary. More useful information is available at http://www.consumerhealthchoices.org, including advice for caregivers and treatments and tests for elders.

One of the best things you can do is to have an advance directive that spells out the kind of care you’d want if you couldn’t speak for yourself. Caring Connections is a program of the National Hospice and Palliative Care Organization (NHPCO). You can find advance directive forms for each state on its web site: http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3289. Caring Connections makes its forms available free of charge.

I haven’t yet found a road map for our local Costco. Fortunately, though, there are many to be found, pre-crisis, in health care.

elder care, long-term care, nursing homes

“Just Shoot Me” Isn’t a Plan

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The Leonard Florence Center for Living, Chelsea, MA
The Leonard Florence Center for Living, Chelsea, MA

How often have you shuddered at the prospect of being terribly frail, living in a nursing home, and then said to your spouse, your kids, your partner, your close friends, “If I ever get like that, just shoot me?” I’ll admit to having said that, myself, on a few occasions.

The fact is, at some point, most of us are going to need some kind of assistance at some point in late life. Boomers may not have the luxury that our parents did, of being tended by adult children or other family members. Families may live too far from one another to enable that day-to-day caregiving. Many boomers – including a sizable LGBT population – do not have children to depend on at all. And whether in future years there will be a sufficient number of skilled home health aides to assist us in our own homes remains an open question.

The good news is that in the course of researching my book, “Last Comforts: Notes From the Forefront of Late-Life Care,” I learned that there are viable alternatives to conventional nursing homes and that they focus more on “home” than on “nursing” in design, operation and management.

Sometimes they’re called “households” or “small houses.” The Green House is one of the better-known variations on the theme of alternative nursing facilities. (www.thegreenhouseproject.org) Instead of a nursing station dominating a floor, a kitchen and common dining and living areas cater to residents who have their own bedrooms and bathrooms. A floor – often called a “neighborhood” — might include 10 to 20 bedrooms. These homes are distinguished for their person-centered care. So, residents’ own preferences dictate their schedules – that is, they can awaken when they want, eat when they want, spend time how they want to. Aides may be referred to as “universal workers,” and are given more responsibilities (and training) than aides in conventional nursing homes.

The nearly 95,000-square-foot Leonard Florence Center for Living in Chelsea, Massachusetts, which has been open since 2010, is a case in point. (www.chelseajewish.org) It cares for 100 residents in 10 “houses” (its term for “neighborhood”) of 10 people apiece. Three of the houses serve people who need short-term rehabilitation. One of the houses serves people living with ALS; another serves people with multiple sclerosis (MS).

The building’s first floor is its “Main Street,” with a bakery, deli, spa and chapel; each house also has its own communal area for games, social gatherings and other events. Each house also offers made-to-order Kosher meals; menus are designed jointly with residents and staff.

There are roughly 15,500 nursing homes in the U.S. that serve about 1.4 million residents at any given time; “household” style nursing homes that embrace culture change currently represent a very small fraction of the total number of long-term care residences in this country. So the question that arises is: Can these models grow substantially over the next 20 years so that we will come to expect this level of care as the norm? The nonprofit sector has led the way in this arena. It’s time for the private sector, which accounts for two-thirds of the nursing facilities in the country, to pay attention.