Discussing Racial and Ethnic Differences in Health Care

A few items appeared this week touching on racial and ethnic differences in health care. We are focused on diversity at HFA, as we prepare for our 2009 teleconference on Diversity and End-of-Life Care.

First, the New Health Dialog Blog discussed a study that appeared in the September 10 issue of the Journal of the American Medical Association, "Student Body Racial and Ethnic Composition and Diversity-Related Outcomes in US Medical Schools". The authors conclude "attending medical schools with high levels of racial and ethnic diversity may better prepare white medical students to care for minority patients." Analyzing over 20,000 web-based surveys from students graduated from 118 medical schools, the authors commented:

. . . white students attending more racially diverse medical schools rated themselves as better prepared than students at less diverse schools to care for racial and ethnic minority patients and had stronger attitudes about inadequate access to health care. . . . The associations of student body diversity appeared to be mediated by more positive interaction and perspective sharing among individuals from different backgrounds within medical schools. The association of student body diversity with white students' self-rated cultural competence was only observed when students perceived a more positive climate for interracial interaction and exchange of diverse perspectives.

Second, Pallimed reviewed a recent study from the Journal of Clinical Oncology on the racial and ethnic differences in advance care planning.

They found that Black and Hispanic patients were less likely to have an advance directive than white patients (and in this case much less likely: 80% vs 50%), were more religious, and were more likely to endorse life-prolonging treatment wishes even if had only a few days to live. Dishearteningly, only 30% of patients had had any sort of discussion with their physicians regarding end of life care - this finding did not differ between groups. Fewer Black and Hispanic patients acknowledged they were terminally ill compared to white patients, however such acknowledgment was associated with increased advance care planning in all groups. The really interesting finding is that differences in advance care planning persisted even after adjusting for demographic factors (age, education level, etc.), terminal illness awareness, religiosity, and preference for life-prolonging therapy when dying. Suggesting, that is, that these differences are either deeply cultural (and thus not as impacted by demographics, illness understanding, etc.) and/or related to how/the frequency with which clinicians bring up advance care planning with patients from different ethnic groups.

And last, the Oregon Center for Applied Science (ORCAS) is conducting surveys for a study funded by the National Institutes of Health. It is seeking people who identify as a racial or ethnic minority to receive $275 for using a new Family Caregiving Support program and completing four online surveys.

Eligible participants must:

* Care for an aging relative or friend with advanced illness or in need of assistance with daily tasks like bathing, eating, dressing, walking, etc.

* Have an email address and access to a computer with a high-speed Internet connection.

* Read and understand English.

Only one person per household may participate in this study.

Visit the survey site here.

Examining Caregiving Among Florida's Minority Populations

An article in Washington's The Olympian newspaper discusses a two-year project run by the University of Miami's Center on Aging to evaluate the strain of caregiving on 200 minority caregivers in southern Florida. The project will feature an emphasis on using technology to connect caregivers, using video phones.

"People don't plan on becoming caregivers," said Dr. Sara Czaja, co-director of the center and principal investigator on the project. "It's something that just happens to them. It's not one size fits all. Culturally, we have different ideas about family, about caregiving - maybe technology can play a big role."

MAKING A CONNECTION

Part of the program involves connecting caregivers to others through video phones installed in their home. Through their video monitors, they can reach out to other caregivers, social workers or medical experts and watch pre-recorded videos about caregiving and Alzheimer's.

Minorities Not Given As Much Information about Survival Rates for Breast Cancer Treatments

A study by the University of Michigan Comprehensive Cancer Center, appearing in the August issue of the journal Health Services Research. recently showed that nearly half of women with breast cancer were not aware of their odds of being alive after five years are similar whether they undergo mastectomy or breast conserving surgery. Women who are part of a minority group are even less likely to know this information.

Minority women were also less likely to know about relative survival rates even when researchers considered factors such as the surgeon's experience, the type of hospital, and whether patients reported talking to their surgeon about treatment options.

"These factors traditionally associated with quality care were not associated with informed decision-making or with our knowledge measures. Surgeon volume or treatment setting did not affect whether women had good knowledge of their treatment options after they had been through the process, nor did it really mediate the racial and ethnic differences we found," says study author Sarah Hawley, Ph.D., a research investigator at the U-M Comprehensive Cancer Center.

Pain and Creativity Exhibit - Call for Artwork

The American Pain Foundation and the HealthCentral Network are looking for people for have pain or are affected by pain to share their artwork in a variety of forms, painting, sculpture, video, words or pictures.

Selected artists and their pain stories will be featured in the American Pain Foundation and HealthCentral Web sites, print publications, and in videos to raise awareness of the pain experience and the impact it has on the individual, family and society.

Online submissions must be received by September 15, 2008.

Addressing Diversity in Eldercare Populations

This article from RiseUP magazine discusses the changes the MetroHealth nursing home in Cleveland made to become more welcoming to increasing numbers of Hispanic patients. Changes included offering Spanish-language television, the ability to room with another Hispanic resident, and more Hispanic volunteers and Latin American foods.

The population of Hispanic seniors will grow the fastest, from just over 2 million in 2005 to 15 million in 2050. From 2006 to 2050, the percentage of African-American seniors will jump from 9 percent to 12 percent. And while Asian senior citizens currently make up about three percent of the elderly population, their numbers will more than double as early as 2040.

Experts say this diversity will have a deep impact on society — from the number of seniors with certain chronic conditions to the languages that health care workers speak; to the foods served at a day center to the ways and convince seniors to stay healthy.

A more diverse senior population is a plus for everyone, says Dilworth-Anderson, who is also the director of the Center for Aging and Diversity at the University of North Carolina.

For example, many black and Hispanic elders are cared for by a wide network of friends and family. Recognizing that tradition, doctors can make similar suggestions to ethnic groups that have not historically embraced that practice, Dilworth-Anderson says. “The richness of diversity can help us in problem solving.”

A report issued in March by the Federal Interagency Forum on Aging Related Statistics, which compiled data from 15 government agencies, found that, as a whole, today’s elderly are healthier and wealthier. But significant disparities remain, especially for blacks and Hispanics. The report found that almost 20 percent more black seniors than white seniors suffer from hypertension.

About 16 percent of white seniors are diabetic, while 29 percent of blacks and 25 percent of Hispanics have the disease.

“You’re going to have a larger percentage of minorities and still have an increase, in general, in the numbers of senior citizens,” says Dilworth-Anderson. Indeed, the total senior population is expected to jump from about 12 percent now to 20 percent by 2030.

The article also discusses how similar facilities are handling increasingly diverse populations, including the Long Life Adult Day Care Center in Bergen County, New Jersey, where Korean seniors meet every day.

Providing so-called “culturally sensitive,” care for the elderly is nothing new, but experts say it will be more important as the numbers of elderly minorities climb.

Wallace, associate director of UCLA School of Public Health, says many food programs for the elderly rely on government assistance, providing meals that are often far from ethnic. Even something as simple as getting rice at every meal — a feature that would make many Asian seniors more comfortable — can be a challenge.

“It’s simple things like, how you prepare chicken. Do you prepare it in a way that a Mexican senior would recognize? Or do you make chicken cacciatore from Italy.”

The questions are not trivial. Seniors who don’t eat well, don’t fare well, he says.

HFA's April 2009 national teleconference will focus on ways of understanding diversity and how cultural histories, traditions and beliefs can affect end of life care. Site coordinator registration will begin in late September.

Round-Up: Risk-of-Death Charts, Violent Death Rates, Obit Magazine and More

A collection of articles, posts, and websites from around the web this week.

• The Journal of the National Cancer Institute, published risk-of-death charts, offering the public way a simpler was to view health threats. The charts stress the three factors that most influence mortality, the person's age, gender, and smoking status. Read the news coverage from WebMD and the Associated Press.


• The New York Times reports on the high rate of suicides among violent death statistics. Over half of all violent deaths are the result of suicide, from 2005 data.


• An op-ed appearing in The Wall Street Journal by the Abigail Alliance for Better Access to Developmental Drugs, urges the Senate to pass a bill that would allow terminally ill patients access to experimental drug treatments.


• An article from The New York Times discusses the role of geriatric care managers.


• And last, Obit Magazine, which describes itself as a magazine that explores death as an integral part of life.

HFA to Address Diversity and End-of-Life Care

In May 2007, the US Census Bureau released information about the growth of minority populations in the United States. "About one in three U.S. residents is a minority," said Census Bureau Director Louis Kincannon. "To put this into perspective, there are more minorities in this country today than there were people in the United States in 1910. In fact, the minority population in the U.S. is larger than the total population of all but 11 countries."

Hospices and other organizations that care for people at the end of life are gaining an increasing awareness of the need to learn more about incorporating cultural competency into their care. HFA's 16th annual National Bereavement Teleconference will focus on Diversity and End-of-Life Care. The program, which will be broadcast Wednesday, April 29, 2009, will look at how diversity may influence end-of-life decision making, and the impact that culture may have at the time of death and during bereavement. One of the goals of the teleconference is to increase sensitivity by helping professionals acknowledge how their own cultural values and assumptions influence the delivery of care. The program will include a special examination of hospice care and diversity, including how hospices are reaching out to diverse groups and incorporating traditional practices and alternative therapies. The program will also discuss the challenges that may occur when culture considerations may cause ethical concerns or moral distress.

Racial Disparities in Health Care, Missing Cultural Needs

A study released Monday in The Archives of Internal Medicine, reported by The New York Times, examined the electronic medical records of 6,814 patients with diabetes in eastern Massachusetts between 2005 and 2007. The study found racial disparities in their treatment, even when it was by the same doctor.

The lead author of the study said in an interview that he attributed the differences less to overt racism than to a systemic failure to tailor treatments to patients’ cultural norms. The problem, said the author, Dr. Thomas D. Sequist, an assistant professor of health care policy at Harvard Medical School, may be that physicians do not discriminate in the way they counsel patients.

“It isn’t that providers are doing different things for different patients,” Dr. Sequist said. “It’s that we’re doing the same thing for every patient and not accounting for individual needs. Our one-size-fits-all approach may leave minority patients with needs that aren’t being met.”

For instance, he said, counseling black or Latino patients with diabetes to lower their carbohydrate intake by cutting rice from their diets may not be a realistic strategy if rice is a family staple.

“We may be listing fruits and vegetables that are part of one person’s culture but not another,” Dr. Sequist said. “We’re not really giving them information they can use.”

The study authors advise that doctors, and other members of the health care system, learn more about the minority communities they serve.

Racial and Regional Disparities in Health Care Getting More Attention

The Robert Wood Johnson Foundation aims to reduce racial and ethnic disparities in health care, through a new $300 million program to improve care in 14 communities.

The New York Times reported on the program, along with a new study from Dartmouth that was commissioned by the foundation.

The study, by researchers at Dartmouth, examined Medicare claims for evidence of racial and geographic disparities and found that on a variety of quality indices, blacks typically were less likely to receive recommended care than whites within a given region. But the most striking disparities were found from place to place.

For instance, the widest racial gaps in mammogram rates within a state were in California and Illinois, with a difference of 12 percentage points between the white rate and the black rate. But the country’s lowest rate for blacks — 48 percent in California — was 24 percentage points below the highest rate — 72 percent in Massachusetts. The statistics were for women ages 65 to 69 who received screening in 2004 or 2005.

In all but two states, black diabetics were less likely than whites to receive annual hemoglobin testing. But blacks in Colorado (66 percent) were far less likely to be screened than those in Massachusetts (88 percent).

The role of race and culture plays in health care has been receiving a lot of media attention recently. HFA is in the process of planning our 2009 teleconference, which focuses on the impact of racial, ethnic, and cultural diversity in end-of-life care. We will post more information about the teleconference in upcoming months.

Providing Spiritual Support to the Dying

This Sacramento Bee article discusses an end-of-life seminar attended by more than 50 local faith leaders.

Hospice College of America (a distance-learning subsidiary of HFA) offers an online course, Engaging Faith Communities in End-of-Life Care. The course is for clergy and faith leaders designed to enhance understanding of issues related to end of life care, and to provide techniques to help clergy and lay leaders to assist members of their congregations who are facing an end-of-life medical crisis. This course was developed by Hospice Foundation of America in cooperation with the Florida Department of Elder Affairs and The Center on Aging at Florida International University.

Black Cancer Patients Choose More Aggressive End-of-Life Care

Today, at the annual meeting of the American Society of Clinical Oncology in Chicago, researchers from the Dana-Farber Cancer Institute in Boston will report on findings showing black patients with advanced cancer were more likely than whites to die in a hospital intensive care unit. Researchers surmise this shows a greater preference for life-extending treatment even at the end-of-life.

"This is the first study focused on black/white differences that prospectively asked [terminal cancer patients] what kind of care they wanted at the end of life, and then documented the kind of care they actually received and the place of their death," said Elizabeth Trice, MD, PhD, of Dana-Farber, lead author.

Although they ruled out a number of possible explanations for the black/white differences, the investigators weren't able to identify precisely why blacks tended to prefer more-aggressive care.

"There is something different about the way black patients and white patients approach the end of life," Trice said, which may be based in cultural attitudes, religious beliefs, and how thoroughly they have been informed about and comprehend their prognosis, among other things.

Data on the preferences was obtained from the Coping with Cancer study led by Holly Prigerson, PhD, director of the Center for Psycho-social Oncology and Palliative Care Research at Dana-Farber and an associate professor of psychiatry at Harvard Medical School. That study is recruiting 800 cancer patients and their informal caregivers, such as family members.

The researchers recorded the location of death for 231 white and 61 black patients who had stage IV metastatic cancer, and who had been interviewed when they entered the study. Black patients were over four times more likely to die in a hospital ICU than white patients, they found.

Addressing End-of-Life Issues in African-American Families

A Kansas City radio station recently spoke to Kansas City Hospice President Elaine McIntosh and social worker Gloria Thomas Anderson about end-of-life issues in different cultures. Anderson has written a booklet addressing these issues in the African American community. To listen to the interview, click the "Listen" button under the headline of this page.

“I hope the information in this booklet empowers African Americans to make the best health care decisions before they are unable to communicate what they want for themselves,” said Anderson, who was inspired by her own family’s experiences. “I want African Americans to know that end-of-life care isn’t about giving up. It’s about quality of life.”

HFA's 2009 teleconference will focus on ways of understanding the impact of cultural diversity at the end of life. We will post more information about the topic as it becomes available.

Supporting Children's Grief

Hospice Foundation of America's 2008 Living with Grief Teleconference will focus on the experience of grieving children and adolescents and the ways that hospice professionals, teachers and school administrators, grief counselors, funeral directors, and parents can best support these populations as they cope with loss and grief. We asked one of our regular contributors, Vince Chiles, to discuss his experiences with children and grief.

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Vince Chiles

Children often live in the midst of the dying. This fact seems counterintuitive when we think of people at the beginning of their lives, but many children will experience the death of a loved one. In fact one of the most magical things a hospice worker witnesses, is the connection between the terminally ill grandparent and the young child or adolescent. A few years ago, we had a patient whose five year old grandson tucked his grand dad in every night. This was very touching and a powerful reminder of the mystery of the circle of life.

I have seen this connection time and time again, of the young comforting the old in their time of need. The very old and young balance each other and remind us of how our own vulnerability supports the life process. In the Native American traditions there is a simple prayer ‘to all our relations.’ It is often said at the beginning and end of ceremonies to commemorate the actions of the group in relation to those who came before and those who are yet to come. Life is a circle that is connected with death and birth, again and again.

The grieving youngsters’ feelings are real and profound when they lose their ancient guides. The thought of not attending my Aunt Joan’s funeral when she had died thankfully never entered my parents’ minds. All eight of my siblings attended her burial recognizing the finality of life, and validating our grief. There are those families who do elect to exclude youngsters from memorials and funerals. Perhaps they think shielding the child from the presence of the dying and deceased protects them in some way, but I have found this to be a contrary perception that can create more problems. The classic story is that of the Buddha, a prince shielded by all suffering in life, due to an infancy prophecy that the prince would become a holy man. When the young prince had a glimmer of suffering he left the security of his palace to discover the secret of life –desire creates suffering. The king lost his beloved child, to the realities of the world. Children are their own beings who need respect and support through their own grief, not denial or protection.

If we choose not to shield the child from death, how can help guide them through their grief? We can support the grieving child in many ways. It is important to tell the child what is going on with their loved one, and what to expect. ‘Grandma is sick, and she’s not going to get better this time. That means she will eventually die, and we have help from hospice here. They can talk to you if you would like.’ Offering a child or grandchild the services of a hospice social worker can be a great thing for the child or adolescent to prepare for saying goodbye and adjust to the grieving process. When a child or grandchild says goodbye, the parent or grandparent suffers less. It may be a heart-wrenching encounter to witness, but the potential benefits outweigh the consequences of not bidding farewell. Providing grief support resources after some one has died in the form of educational groups, grief and loss camps, support groups, or one-on-one counseling can all help. It is important through that the child be open to these services and that they are able to opt-out or maintain some control if activity becomes to overwhelming.

Children and adolescents grieve differently than adults do. They may need to draw pictures when they are very young to make sense of what has happened, or have some alone time to figure it all out when they are older. I remember a Native American boy I had worked with on the White Mountain Apache Reservation, who was so angry that his father had died when he needed a positive role model in his life. We walked to the White River and started to throw rocks into the water. I challenged him to throw the rocks as far as could across the river, letting go of his anger, and allowing the water to wash away his pain and suffering as his angry rocks were swallowed up by the current.

Finding creative ways to help children and adolescents grieve can also help the adults around them process their loss. Children are grounded in their intuition and haven’t figured out how to rationalize and explain away life’s mysteries. They can draw a picture or express themselves with other creative outlets that inspire us to see their wisdom in spite of their youth. Hospice social workers, bereavement counselors, and volunteers are great resources to families with grieving children and they often provide support to families in need regardless of whether the family received hospice care.

Magic in many instances is an illusion, but the magic in hospice when a child grieves effectively is that they evolve into healthy adults. They learn to see the connections in the circle of life, and recognize the vulnerability we all share. Children who learn to grieve well recognize the interdependence of life, and can appreciate the relationships they have on a deeper level. Helping a child learn how to effectively grief a loss, is a little magic we all could benefit from.

Vince Chiles, MSW

Changes Seen in Nursing Home Usage by Blacks

Tuesday's Orlando Sentinel published an article about the increased use of nursing homes in the black community, both in Florida and around the country. This is a changing trend. In the 1970s, blacks were half as likely as whites to be in nursing homes. Today, they are more likely to be.

The increase of blacks in nursing homes is largely because of Medicare and Medicaid funding changes in the 1980s and 1990s, Smith said. Under the new rules, hospitals were encouraged to discharge patients to nursing homes. But nursing homes received less funding for residents who didn't need skilled care.

The change led to a proliferation of private assisted-living facilities that attracted whites who could afford them. But blacks, who traditionally have lower incomes, less health insurance and smaller retirement incomes, often don't have that option -- and end up in nursing homes where their care is paid for by Medicaid.

The article also states that although it is less expensive to provide community-based care in the home, demand for those programs has outpaced funding, and many services have waiting lists.

Providing Culturally Sensitive Nursing Care

Marilyn Hardy Bougere, MSN, RN, CNS, a nursing instructor at Jacksonville State University in Alabama, provides an article for MinorityNurses.com, addressing how understanding how cultural difference effect a patient experiencing grief, can enhance nursing care. The article itself provides an excellent review of some older literature. Following the article, there are two fictionalized case studies about providing culturally and linguistically competent nursing care. HFA's 2009 Living with Grief teleconference will focus on multiculturalism and end-of-life care.

"As the racial, ethnic and cultural diversity of the U.S. population continues to increase, there is an ever-growing need for the health care profession to become culturally competent in all aspects of care delivery—and this includes the care we provide to grieving patients and their families. A recently published article on cultural diversity and grief states that the need for culturally sensitive grief/bereavement educators and counselors is on the rise and that health care providers must continue to expand their knowledge of the many ways that people grieve."

Racial Differences in the Decision to Revoke Hospice Care

Pallimed's Drew Rosielle, MD, writes about a recent article from the Archives of Internal Medicine, which examined data from 167,000 patients being served by a multi-state hospice group over a five year period. The patients included in the study left hospice care while still alive, a small percentage of whom went on to pursue aggressive treatment. The interesting note, is that African-Americans had 70% higher odds of making the decision to pursue aggressive care than whites.

Hospices Reaching Out to the Hispanic Community

This article from The Kansas City Star, discusses how one local hospice formed an entire Spanish-speaking care team to assist in its outreach to the Hispanic community. In the case described in the article, this team included a nurse, personal aide, and a chaplain.

In the excerpt below, the hospice's chaplain, Michael Arciga, gives his thoughts on why Hispanics underuse hospice care.

"There are a couple of reasons that Hispanics might not seek out hospice care, he said.

First, there is a misconception about hospice among immigrants from Latin American countries. The Spanish word for hospice refers to a place, such as an asylum or an orphanage, not a service that brings health-care aides and social workers to a patient’s home or hospital bedside.

“When they hear ‘hospice,’ they think we’ll take their loved one somewhere and take the family out of it,” Arciga said. “I try to provide education that we go where the patient is. If they’re in the home, great. We just support you in taking care of your loved one.”
The cultural tendency to take care of needs inside the family, rather than seeking outside assistance, also can hamper hospice access in the Hispanic community.

“Within the Latino community, as is true in the African-American community, taking care of your own (is important),” Arciga said. “There is a certain level of distrust with people coming in because there’s a fear of what they are going to do. You have to establish that level of trust first, then they will allow you to provide care to their loved ones.”

Promoting Hospice to Hispanics

This article appearing in the Yakima Herald-Republic (Yakima, Washington) addresses hospice's effort to reach out to Hispanics and other minority groups. In Yakima, efforts to share information with Hispanics have centered on meeting with clergy, holding seminars, and using Spanish-language radio shows to reach Spanish-speaking residents.

Who Wants Hospice: Racial Disparities in Who Receives End-of-Life Care

According to a report by the California HealthCare Foundation, ethnic minorities enroll in hospice care at lower rates than whites. Only six percent of hospice patients were African-American in 2004. Four percent were Asian-American, 15 percent were Latino, and 74 percent were white.

Medicare admissions requirements are thought to be at least partially responsible. For Medicare funding, a hospice patient must forgo all curative treatment, including chemotherapy and dialysis. Ethnic minorities are thought to be more likely to pursue aggressive treatment until the death.

Also, African-Americans are more concerned than other groups about finding caregivers who will respect their culture. White families are more concerned about pain alleviation, while cost of care is the primary concern for Hispanics and Asians.

The report concludes by recommending that (1) Medicare regulations be reformed to allow aggressive treatment concurrent with hospice care; (2) Hospice employees be trained in cultural sensitivity; and, (3) emergency departments expand their bereavement services because ethnic minorities are more likely than whites to die in a hospital setting.

Readers who would like to learn more about being a culturally competent caregiver should mark their calendars for the of spring of 2009, when Hospice Foundation of America will host its 16th annual teleconference: Living With Grief: Challenges of Diversity.