Nursing Homes for People of Color:
Still Segregated, Still Unequal

Benzena Tucker (center) spent the last few years of her life in a public nursing home with peeling paint and overworked staff. She had no family and had been too ill to work for many years. At her side, are two volunteers, Wendy Josephs (l.) and Ricki Lewis (r.).

Benzena Tucker (center) spent the last few years of her life in a public nursing home with peeling paint and overworked staff. She had no family and had been too ill to work for many years. At her side, are two volunteers, Wendy Josephs (l.) and Ricki Lewis (r.) Benzena provided permission to publish this photo.

If Martin Luther King, Jr. was alive today, he would be 86. If he was like many elderly black Americans, he might well end up in a nursing home ranked lower in quality and with less well-trained nursing staff than a nursing home that many white Americans reside in. The facility would likely house a disproportionately larger proportion of people of color and on Medicaid than higher-quality nursing homes.

The disparities are easy to miss. After all, what happens in nursing homes stays in nursing homes, invisible to the rest of us. The only ones who see what’s going on are the patients, family and friends, and staff. If people report lousy conditions in the homes, nursing homes often vilify them. In fact, some would argue that the industry hides behind a smokescreen of patient privacy. Yes, there are inspections. Are they sufficient to drive equal care? Apparently not. Overall, the nursing home industry has changed little in terms of providing quality care for minority elders on par with what white elders get.

Documentation of inequality in long term care for minority elders dates back to enactment of Title VI of the Civil Rights Act and the passage of Medicare in 1966, which prohibited segregation in health facilities that accepted federal funds. In 1981, an Institute of Medicine report addressed the issue of segregated care in nursing homes. The hospital industry was forced to integrate to some degree at least, but nursing homes have been left largely alone.

Contrary to stereotypes, a large Commonwealth Fund analysis led by Vincent Mor, PhD, from the Department of Community Health at Brown University, found that segregation was lowest in the South and highest in the Midwest (Wisconsin, Missouri, Michigan, Indiana, and Ohio). The study found that Cleveland, Ohio, followed closely by Gary, Indiana, were the most segregated cities for nursing homes. Additionally, black elders tended to be in nursing homes in the lowest quarter of quality ratings. Blacks were 1.7 times as likely as white Americans to reside in a nursing home that was subsequently thrown out of the Medicare and Medicaid programs because of poor quality and 2.64 times as likely to be in a facility housing predominantly Medicaid residents. Elderly black Americans are not the only groups at increased risk of going to a poor-quality nursing home. So are elderly Hispanics and probably many other groups not cited here.

The proliferation of for-profit nursing homes in an industry that was once largely nonprofit has also had adverse impacts. In this study, for-profit nursing homes have been found to have lower RN staff intensity and lower RN skill mix than nonprofits, jeopardizing patient care. Poor people on Medicaid are going to for-profit nursing homes at far greater rates in many parts of the country.

This post is a snapshot of one part of long term care, which is an immense, complex topic.

Readers would be misguided if they thought that disparities are concentrated in the Midwest and do not persist elsewhere. These two anecdotes, though not data, are telling. Friends of mine recently watched in tears as a dear African American male friend landed for a long stay in a one-star nursing home in New Jersey. The nursing home housed people of color on Medicaid primarily. My friends were inconsolable when they returned from a visit, quick to call it a “crowded, smelly, dumping ground.” I learned of another story from an older African American woman from Queens NY, a New York City government retiree. I worked with her for many years. When she felt that she could no longer keep up her house, she could not find a satisfactory long term care residence to move into. She never left home: her health deteriorated and eventually, she died at home.

These stark realities are shameful. It’s 2015. We can quibble about statistics, question cause,effect, or association, but outrage, remedies, and stiff penalties and incentives for change are desperately needed.

Warning Signs

“Warning Signs” is a new concept for Patient POV. In it, I plan to point to unanticipated changes in health care that warrant a closer look. In some cases, all we see is a snapshot of something awry in one locale, but the change is ominous, has the potential to spread, and the public ought to know about it. I hope to point to exemplary shifts in medicine as well.

In the past week, I found these warning signs particularly worrisome, and applaud the work done by other reporters and bloggers to document them:

  1. If you thought the peanut butter-salmonella scare sounded bad enough on its own, think again. The Center for Science in the Public Interest explains that even though the FDA Food Safety and Modernization Act was passed in 2011, FDA has not implemented measures essential for food safety. “Deadline after deadline has come and gone with the agency taking no action, leaving consumers vulnerable and industry without guidance. Peanut butter and other foods are no safer than they were at the beginning of the President’s term, when he rightfully expressed concern about the peanut butter in his daughter’s sandwiches.”
  2. Concerns over the future of Medicare have gotten lots of attention, but the future of Medicaid has gotten far less scrutiny, particularly for seniors and the disabled. An editorial in the Tampa Bay Tribune takes up Romney’s mean, lean plans for Medicaid and nursing home residents.” The editorialists point to the public’s confusion that nursing home care is solely a Medicare issue and that Medicaid is strictly for the poor.  “But Medicaid is the program that provides long-term care to the elderly and disabled…It was Ryan who authored the plan to convert Medicaid from a strong federal-state entitlement to a block grant program to the states that Romney has incorporated into his campaign. The plan, passed as a budget blueprint by the Republican-controlled House, would gut Medicaid’s safety net and focus instead on cutting funds. The nonprofit Center for Budget and Policy Priorities says Medicaid funding would decline by one-third by 2022 under Ryan’s plan.” Take a closer look.
  3. Electronic health records have enormous potential for improving patient care and tracking health outcomes, but abuses in Medicare billing, identified in a NY Times article, are worrisome. Readers will want to be aware of:
  • cloning, where a doctor copies information from a previous visit to a later one, or duplicates information from one record to another;
  • upcoding, which The Times defines as exaggerating “the intensity of care provided or the severity of a patient’s condition to justify higher billings.”

In response to this article, Attorney General Eric Holder Jr. and Health and Human Services Secretary Kathleen Sebelius sent a letter to five hospital associations, noting “troubling indications” and their intent to prosecute for billing for services never permitted.

4. Ever wonder, why, all of a sudden, you see higher out-of-pocket costs for doctors’ visits. Consider this: the Cleveland Plain Dealer describes how ordinary doctors’ offices have become “hospital departments,” and along with it, come new facility fees for simple primary care.  In one example at Cleveland Clinic’s MetroHealth Center, , a patient was charged a facility fee of $1,655, about four times the doctor’s bill, for 30 minutes in an exam room to have a suspicious lesion removed. The patient states: “There is a much bigger issue and that’s that people won’t get the care they need because they can’t afford these charges. It’s totally wrong.”

“Warning Signs” is new. Let me know if you like it, think of something that I missed, and most importantly, your POV.


Writing About Alzheimer’s and Dementia Gets Complicated

Now that I have spent three days listening to expert neurologists, demographers, caregivers, and policy people talk about Alzheimer’s, I come away from the meeting with a sense that the story is complicated, and that I hope it is not reduced to talking points and sound bites. I didn’t feel that it was at the meeting, but I can see how reporting could go awry, and not really help readers or society out.

I don’t want to cover Alzheimer’s disease pursuing the “awareness” route, namely pressing how many millions of Americans have the disease, and how unabated, with the graying of America, these numbers will rise astronomically. There is no cure for Alzheimer’s disease. Existing drugs are not all that beneficial, and when they help alleviate symptoms, it seems to be for a very brief window, in a subset of patients, that nobody has convinced me you can predict. Are we at square one? Should we grab at any way to mobilize the troops for the disease?

There’s more negative news: clinical trials for years have been negative and clinical trial enrollment is poor. Can it be improved? Should I promote enrollment in clinical trials? What might a patient gain from participating in a clinical trial? What about informed consent? How do patients with Alzheimer’s disease give informed consent?

Is using amyloid as a biomarker something that should be abandoned because reductions in amyloid have not shown improvements in the disease? What is the state of the science?

What about labeling patients with mild cognitive impairment or Alzheimer’s? Is mild cognitive impairment an entity that is meaningful, or should it be discarded? Some speakers at the Alzheimer’s disease forum were skeptical about the classification, which is not used in many parts of the world. Will mini-screens being in primary care offices become popular because experts and advocacy groups say that they will reduce stigma and work effectively? Under what conditions, could Alzheimer’s disease be overdiagnosed? Remember, older people are on many medicines, they can have electrolyte problems, hearing problems, and other conditions that could impact on diagnosis.

What kinds of protections are in place for people? There is a big push by pharma and the Alzheimer’s Association to be certain to record an Alzheimer’s disease diagnosis in a medical record. That may seem relatively innocuous for old, retired people, but could some people lose jobs, lose health and long term care benefits, be barred from housing? What is the upside to getting a higher count of Alzheimer’s patients? Do the benefits outweigh the risks?

I also think that battles over Medicare need to be discussed with the possibility that many more Americans are likely to be afflicted with Alzheimer’s. Where will they get care? How do Americans want it to look? Will Alzheimer’s patients be warehoused? Can community programs manage people with end-stage Alzheimer’s?

Should innovative non-drug approaches in the arts be funded more widely? How can we reduce stigma about Alzheimer’s disease? I’d like to know a lot more about what is happening today to people with advanced Alzheimer’s disease. Can they find placements? Where? What are equitable ways to fund Alzheimer’s and dementia care?

Long Term Care

How should the country support long-term care? Should children be taught, as they are in lower school, in some parts of Japan, about caregiving, dementia, and Alzheimer’s? What about minorities, lesbian, gay, bisexual, and transgender people with Alzheimer’s? What about aging single people, who are all over America, and growing around the world? What services are available for them? How will we plan for them?

Alzheimer’s disease issues do not exist in a vacuum.

People should be aware of all of these issues, as people think through a national plan for Alzheimer’s disease and think through federal and state policy. I am intrigued that some countries have national plans for Alzheimer’s and I hope to write about them. Perhaps they will be instructive for the US. Far more patient stories need to be told to understand the complexities.

Alzheimer’s Disease Issues – Day 2:
Let’s Keep the Conversation Going

I spent today at an all day Alzheimer’s meeting, taking notes and tweeting. I am also exhausted. Many of you know that this is my 23rd consecutive day blogging here. There are a lot of pluses to posting every day, but on a night like this, where I have been focusing all day on new, often dense material, I run the risk of being incoherent.

Here are some issues that are related to aging, Alzheimer’s, and dementias, that we all might want to think about:

I am tremendously concerned about the future of Medicare and access to affordable drugs and long-term care services. I also worry about extension of the retirement age that is under discussion when so many Americans over age 50 don’t even have work or are under-employed. News that women are not bounding back to work as quickly as men is frightening. The jobs picture must change.

Like many disease categories, Alzheimer’s is spoken of frequently in terms of early detection and urging transparently charting it on people’s medical records. Yet, as speakers pointed out, once someone is labeled as having cognitive problems on health records, they may become more dispensable at work because Alzheimer’s care is extremely costly. How can we come to grips with this?

Stigma associated with cognitive impairment remains huge, current treatment may alleviate symptoms in some, but treatments only help a small proportion of a people for a relatively small window of time.

There is a movement promoting using creative arts to engage people with Alzheimer’s. Today, we saw the movie, I Remember Better When I Paint, available on DVD from the Hidalgos Foundation. There are people around the US and elsewhere working with theater, dance, music, and art to engage Alzheimer’s patients.

We have a long way to go in shaping a fair and equitable national planning strategy for Alzheimer’s care. This conversation should continue.

Follow me on twitter at lauranewmanny.

Alzheimer’s Disease Issues 2011 Fellowship Begins

I am in Washington at the National Press Foundation’s Alzheimer’s Disease Issues 2011 Fellowship with about 15 other journalists. The program runs through Wednesday. Today’s session was a half-day, with presentations by Richard Jackson, director of the Global Aging Initiative, Center for Strategic and International Studies, and Harry Johns, President and CEO of the Alzheimer’s Association.

Global Age Shift

Trends that struck me in Jackson’s global aging presentation were as follows:
1.    Falling fertility is near or beneath replacement in countries, including China, Brazil, Mexico, and Chile. In Turkey, Iran, North Africa, and Indonesia, fertility is also falling fast.
2.    Rising life expectancy is bringing added financial burdens that few developed countries can handle.
3.    As the population ages, productivity in the workforce goes down and growth slows.
4.    Savings and investment drop.
5.    As a result, families get smaller and people become more risk averse. Smaller families may find it more difficult to socialize their children to care for elders as they did traditionally.
6.    A rising share of the population does not have a child to look after them, which in my mind, puts more elders at risk of poverty in old age.
7.    Right now, Germany and Sweden look the best in terms of funded retirement savings. Germany and Japan both have mandatory long term care insurance deducted from income.
8.    There have been Draconian cuts in pensions worldwide.
9.    However, Germany stands out as one country where you don’t have to become poor to get old age/long term care.

Planning for Alzheimer’s Disease Burden in the United States

Turning to the United States, Johns compared the stigma surrounding Alzheimer’s to where cancer was in 1961, when many doctors did not tell patients about a diagnosis of cancer. He pointed out that available treatments are at best “”symptom improvers’ that don’t work for everyone and when they work, they may not work for long.”

Legislative changes at the federal level are promising, including the National Alzheimer’s Project Act (NAPA), which passed in December, as part of the lame duck session in Congress. It requires developing a strategic plan for Alzheimer’s in America, according to Johns. As part of the “Welcome to Medicare exam,” including an annual cognitive measure will be added to the annual physical.

The HOPE (Health Outcomes, Planning, and Education) for Alzheimer’s Act (H.R.5926), sponsored by the Alzheimer’s Association, is currently making the rounds in Washington. It is endorsed broadly, with bipartisan support. has a petition on the web  urging the public to sign it and “Stand with the Alzheimer’s Association and urge members of Congress to support” it.

According to Johns, the Hope for Alzheimer’s Act will encourage discussion about Alzheimer’s, promote charting in the medical record, and advance discussion about Alzheimer’s and care.

The petition states: “Too many of America’s baby boomers will spend their retirement years either living with Alzheimer’s disease or caring for someone who has it. Even worse, many of the estimated 5.4 million Americans with Alzheimer’s disease do not have access to a formal diagnosis or care planning services preventing them from planning for the future. As we work for Alzheimer’s research, we must ensure individuals living with the disease have access to services that can improve their quality of life today.”

This is the second time that the Foundation has run this event, which is underwritten by Pfizer,the Lawrence B. Taishoff Endowment, and the National Press Foundation Program Fund. A few journalists and bloggers have criticized the program in the past because of Pfizer money. Pfizer is in the Alzheimer’s market so anyone could argue that in supporting an educational program on Alzheimer’s, journalists who cover Alzheimer’s information gained at the meeting, could use that information to enhance Pfizer’s market share. That’s why I am being up front about this here. According to NPF President Bob Meyers, Pfizer has absolutely no editorial impact on the program, but before the program, Pfizer receives a proposed agenda and budget.

I don’t know whether I’ll have the energy to blog every day of this meeting (it’s Alzheimer’s all day for 2.5 days ahead), but if you have any concerns about Alzheimer’s patient care, caregiver issues, or funding, please point them out in the comments.

When Colorectal Cancer Screening is Too Much, Too Frequent, or Not Enough

No other disease advocacy group has built as effective an awareness campaign as the cancer societies. It has helped to build support for prevention, research, and treatments, but I wonder whether excess awareness could be contributing to the overuse of colorectal cancer screening in older people. They have been exposed to this message for decades.

Earlier this week, Archives of Internal Medicine published two studies and an editorial pointing out problems with the lack of targeting in colorectal cancer screening (either fecal occult blood test (FOBT) and/or colonoscopy) to people most likely to benefit.

The fecal occult blood test checks for blood in your stool and is a noninvasive test that can be done easily as a first screen for colorectal cancer. Costs vary, depending on the laboratory, but $100 for the test is common. In the VA and among countries where costs are of concern, FOBT is often the initial cancer screening test of choice, offered to asymptomatic people in their fifties and sixties annually. If the test is suspicious, a colonoscopy is more definitive. Colonoscopy costs also vary, but it is not uncommon to cost $1000.

A study led by Christine Kistler, MD, raises questions about how well colorectal cancer screening is targeted. It’s a study of veterans age 70 and older at 4 VA facilities. The study revealed:

• Too many older people with significant health problems are getting screened; many are getting screened when their life expectancy is shorter than 5 years and they are likely die from other causes. Nearly half of the patients who had a fecal occult blood test (FOBT) didn’t have a follow-up colonoscopy in the 7-years of follow-up, and half of those died from other causes within 5 years

• Slightly more than 1/2  of  people who had a positive FOBT went on to have a follow-up colonoscopy in the 7 year follow-up period; at least a quarter of these had significant disease found, including 6 cases of cancer.

• Of those who had significant adenomas and cancer found on follow-up colonoscopy, some of these older individuals had serious complications from treatment, including time in the ICU, chronic ostomy leakage, or a hypoxic event.

“A colonoscopy clearly has risks,” explained Christine Kistler, MD, the study’s lead author, and assistant professor of Family Medicine at the University of North Carolina at Chapel Hill. “It’s not just a walk in the park for elderly patients with lots of health problems.”

A second study led by James Goodwin, MD, from the University of Texas Medical Branch, Galveston, TX, reviewed a 5 percent sample of Medicare enrollees to find average-risk people undergoing screening colonoscopy. Patients between age 75 and 79 or 80 years and older received a second colonoscopy examination 46 percentand 33 percent respectively within 7 years. Detailed analysis showed that higher rates of repeated colonoscopy was associated with being male, having more illnesses, and seeing a high volume colonoscopy provider. There was plenty of geographic variation, as low as 5 percent to 50 percent. The authors concluded that current Medicare policies that limit colonoscopy to once every ten years are not succeeding in slowing widespread use of colonoscopy.

The authors were both quick to point out that some groups are not getting the recommended cancer screenings that they need.

Colon Cancer Screening Recommendations

Current guidelines from the US Preventive Services Task Force and the American Cancer Society recommend regular colon cancer screenings begin at age 50 and continue until age 75. People with a higher risk should begin screening at a younger age, and they may need to be tested more frequently. Beyond age 75, USPSTF and ACS state that screening decisions should be individualized, factoring in life expectancy, other health problems, ability to tolerate a colonoscopy, and net expected benefit. In the UK, colorectal cancer screening is recommended for individuals until their 70s.

How do you get healthy people on the right track towards getting proven cancer screenings that can save lives at the recommended ages? And how do you get doctors on board to advise screening at those intervals.

A Patient POV and Her Daughter

I’ll tell you a story about my mother who died at age 92. Until the last 6 months of her life, she was in excellent shape. She religiously went for a Pap test and mammogram every year until shortly before she died. It didn’t make a lot of sense to me and I tried to convince her otherwise.

I knew that the US Preventive Services Task Force found no evidence for mammography over age 75. Some investigators say that it may be beneficial to continue mammography screening if life expectancy is 10 years. For Pap tests, for women who have previous normals and no other risk factors, you can stop at age 65.

So I couldn’t convince my mother to stop.  I assume she had regular colonoscopies as well. She had reason to go besides. She got reminders from her primary care doctor whose office was at an academic medical center. Her insurance covered it.

Dr. Kistler suggested that my mother might have had another reason for keeping these screenings up. “Sometimes if you suggest stopping, patients think that they are giving up.”  Sure enough, she didn’t stop getting screened for breast cancer and cervical cancer until she was declining in the last year of her life.

The astronomical dollars spent on end of life care are one thing that we have heard lots about, but what about the decades of cancer screenings in the golden years for no benefit, and possible harm. That needs to be examined too.