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.

Health Disparities and Behavior Change:
A Plea to Stop the Attack Ads

The NYC Department of Health and Mental Hygiene takes on a poor, white, single-mom, smoker in a harsh black-and-white tv spot. An off-camera announcer essentially tells her to quit smoking or risk leaving her children without a parent. That’s the latest spot, viewable in the New York/NJ/Connecticut market. The NYC Department of Health and Mental Hygiene has been running these in-your-face ads that press for healthy behavior change for awhile, but what’s changing is that more places are pushing them as well. Proponents of the ads claim that shock gets people to pay attention and consider changing their ways. I am not addressing the ads that show diseased lungs or people on oxygen here.

I do not like this television spot at all. Yes, it’s eye-catching, but so what? I don’t think it is going to get poor, white, single-mom smokers to quit smoking. Besides, the spot is completely unsympathetic to the woman.

Fighting Smoking, Confronting Poor Single Moms

The television spot opens with a somber male authoritatively stating:

“Mrs. Wadley, I am sorry. You have cancer.” You see an obviously poor white mom who must smoke, facing a harsh light, having trouble focusing. [Perhaps a harsh flash was used.]

The off-camera voice bellows: “What’s worse than finding out you have cancer?” 

The camera shifts to the woman anxiously facing her children. Their backs are to us and in the foreground. Everyone is fidgety: the woman facing her two kids, and her children facing her.

[The answer] “Telling your children that you have cancer,” states the announcer, who we never see.

For a second, the spot flashes on a list of resources to help you quit–thankfully.  Information flashes on and off so fast that any viewer would have to wait for the next spot to copy the information down.

The announcer sounds like a pompous creep and the woman is made to look like a parasite — as if she warrants a push to care for her children and not leave them without a parent.

Disclosure: I never smoked, but I recognize that cigarette smoking causes lung cancer, and that smoking can kill. I’d like to see interventions that work.

Shock Tactics

I don’t know about you, but anyone who has tried to get me to change my lifestyle who attacks me, doesn’t get very far. Many years ago, a doctor made a snide remark about my weight. When I left the doctor’s office, I made a beeline for a hot fudge sundae. I had a neighbor once who was obese, who was bullied by neighborhood kids. As a result, he went on a crash diet, losing lots of weight. He told me that he was so mad that he wanted to show them he could do it. I wonder whether the weight loss was durable: it’s hard to imagine that bullying would lead to healthy behavior change and better health outcomes. If it works, it is not the kind of society that I want to live in.

An ad campaign by Children’s Health in Atlanta, Georgia,  featuring individual fat black and white kids, was yanked recently when the public objected to the strategy. I asked a few people for comment on these photos of 11-year-old children –isolated shots with each of them looking somewhat uncomfortable in their fat selves.

“At first, you look at it and you wonder if it is child abuse,” emailed one person, responding to the photos in the CNN story linked to in the preceding paragraph. She has an obese adult child and continued: “We probably should have started earlier. Now it is too late.” Another emailed me: “The ads are too harsh. If I were an obese child or youth, I would feel humiliated by them.  The ads also have the potential to give fodder to those who bully obese kids.”

An interesting footnote: in Georgia, more positive role models showing kids exercising and eating healthier are now being used to reduce childhood obesity in Georgia.

Another NYC Department of Health spot features an obese black model with a photoshopped, amputated leg to drive home the point that, if you eat supersize portions, you could end up with diabetes and a leg amputation.

Even though subsequent news coverage focused on the identity of the model, whether he knew he was photoshopped, and the ethics of using actors and photoshop, I’d like to see evidence that ads like this really work,  do not cause harm, or worse still, backfire, leading to even more distrust of health authorities.

In the meantime, I have seen another approach: Michelle Obama competing in push-up challenges and potato sack races on television talk shows and on the White House lawn. I’d like to see more concerted efforts to get the poor and minority regular access to healthy, affordable food. I’d like to see more sympathy regarding the barriers to quitting smoking, eating health food, and exercising when you are poor and you have few options.

Admittedly, my litany here is not scientific.

Many people may think whatever it takes to get people to stop smoking, lose weight, and maintain a normal weight, it is worth it. I disagree. I’d like to see the science that backs these kinds of ad campaigns before they are disseminated any more widely. I don’t think that shaming people who smoke or eat too much for their own good is an acceptable strategy. I can’t believe that a stimulus like this is durable either. If ads like this really work and they don’t harm, researchers ought to share the data. But so far, I just hear empty claims – no outcomes data, no follow-up. If people are motivated to quit smoking or adopt a healthier data as a result of the ads, where is the data?

LGBT Healthcare: Out of the Closet in New York

Credit: To Treat Me, You Have to Know Who I am, National LGBT Cancer Network, NY

LGBT healthcare took a giant step forwards in New York City last week, with the announcement that New York City’s Health and Hospitals Corporation (HHC), AKA the City’s public hospital system of 11 hospitals, community health centers, and rehabilitation centers, will immediately adopt a program devoted to providing respectful, patient-centered, and culturally competent care to thousands of lesbian, gay, bisexual, and transgender patients. Working with the National LGBT Cancer Network, all of HHC’s 39,000 staff will be required to go through training that would sensitize employees to medical conditions and risk factors, which may be more common based on the gender identity or sexual orientation of the patient.

Liz Margolies, founder of the National LGBT Cancer Network, says that “previous negative experience in the health care system means that many LGBT people avoid coming in for needed health care tests and care. We want to right this wrong right out of the box.” According to Margolies, one in five transgender people are turned away from healthcare facilities. They need similar safe and welcoming care.”

LGBTpeople do not require specialized attention, but risk factor differences include higher rates of alcohol, tobacco, and drugs from an early age. “Medical providers need to be made aware of these risks and be sensitive to the fears of discrimination that prevent LGBT people from even attempting to get care,” said Margolies.

HHC President Alan Aviles, said that each employee would participate in a 15-minute orientation before they work in the system. Department will have more detailed, 1-hour train-the-trainer sessions.

Visitation, Research Needs of LGBT People Recognized

The announcement follows other gains in putting LGBT healthcare needs up front across the United States. In April 2010, President Obama extended hospital visitation and participation in medical decision making to LGBT partners.

Release of an Institute of Medicine Report on the Health of LGBT People at the end of March put the spotlight on the critical need to reach out, incorporate, and study LGBT people in healthcare research. As the report states: “researchers need more data about the demographics of these populations, improved methods for collecting and analyzing data, and an increased participation of sexual and gender minorities in research.”

Margolies said that since the video was released, other hospitals have contacted her, aiming to use it to develop programs, similar to HHC’s.  People expect that the Joint Commission on Accreditation of Health Care Organizations (JCAHO) will soon put standards in place to demonstrate that they are sensitive to the cultural needs of gay, lesbian, bisexual, and transgender people.

“It’s not necessarily outright bigotry, but widespread and pervasive ignorance on the part of medical staff on how to recognize and treat diverse patients,” said Margolies. “If we don’t educate them, who will?”