Category Archives: Book Reviews and News

Last Comforts: Notes from the Forefront of Late-Life Care, News and book reviews

You’re In a Nursing Home. Now What?

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.

When Less is More for Elders

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.

An RN’s View From the Front Lines of Care

When her children were young, Theresa Brown, RN, made a mid-career change: from English professor at Tufts University to nursing, and chose to specialize in medical oncology. We should all be glad she did, because she has chronicled her experiences – and by extension, illuminated some of the most pressing issues and challenges in our health care system – in two excellent books as well as in personal essays in The New York Times. And she does it with clarity, insight, humor and understated eloquence.TheShiftcover

Her voice is important because nursing truly is the heart of care for the ill. No other health professionals spend as much time providing hands-on care for the sick than nurses. Our health care system is increasingly complex, technology-laden and hyper-specialized. So the need for a humanistic perspective from those who are on the front lines has never been more pressing.

I had the great pleasure of interviewing Theresa recently, following her book tour for The Shift: One Nurse, Twelve Hours, Four Patients’ Lives. The book focuses on a day in her life in the oncology ward of a Pittsburgh teaching hospital; she subsequently left that position and currently works as a hospice nurse, visiting people in their homes.

Just a couple of highlights of our conversation:

Theresa told me that she is comfortable in her current role as a home hospice nurse. In fact, she said, one reason she made this switch was that she always likes to learn new things and wanted particularly to learn about how the kind of care provided for patients at home might ultimately be transferred to the hospital setting. Care that offers more dignity and privacy for patients, such as letting patients sleep when they need to; or even wear their own clothes; and making it easier for family, friends and caregivers to visit any time and stay overnight if need be.

“It would be great to go back to a hospital and say, how can we make things better?” she said. “Creating a balance of comfort and quality care.” Even making the decision not to wake people in the middle of the night would be an enormous change, she pointed out.

We also talked about the ideal of the team approach in palliative and hospice care, where physicians and nurses work closely together in an atmosphere of mutual respect. (I’ve interviewed a number of such teams and, like proverbial married couples, they often do finish each other’s sentences.) In a hospital setting, Theresa noted, “communication between physicians and RNs often is not what it should be.”

She’d like to see more inter-professional training focusing on better communications so that “we could view each other as people and understand each other’s roles and responsibilities, and the pressures on each of us.”

There is no doubt in my mind that Theresa will keep learning – and educating us along the way – and that she’ll continue to make a difference in reaching the goal of improving patient care. In the meantime, you can order books, read her columns or join her mailing list at http://www.theresabrownrn.com.