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.

Questioning Cancer Therapy

The New York Times' Jane E. Brody addresses the tough decisions involved in choosing a treatment plan for cancer in this article last week.

Specialists in ovarian cancer from University Hospitals Case Medical Center in Cleveland described a study of 113 patients with ovarian cancer in the journal Cancer in March.

“Patients with a shorter survival time,” they found, “had a trend toward increased chemotherapy during their last three months of life and had increased overall aggressiveness of care [but] did not have improvement in survival.”

The team concluded, “Our findings suggest that in the presence of rapidly progressive disease, aggressive care measures like new chemotherapy regimens within the last month of life and the administration of chemotherapy within the last two weeks of life are not associated with a survival benefit.”

With aggressive therapy, the majority of the women in the study who died did so without the benefit of hospice.

Dr. Thomas J. Smith, an oncologist and palliative care specialist at the Massey Cancer Center of Virginia Commonwealth University, said in an interview that patients needed to understand the tradeoffs of treatment.

“Palliative chemotherapy, which is what most oncologists do, is meant to shrink cancer and improve the quality and quantity of life for as long as possible without making patients too sick in the bargain,” he said.

The Cleveland team pointed out that the treatment goal can, and should, change. “There is a difference between palliative chemotherapy administered early in the trajectory of disease and near the end of life,” the researchers wrote. “The goal of end-of-life care should be to avoid interventions, such as cytotoxic chemotherapy, that are likely to decrease the quality of life while failing to increase survival.”

In fact, those who choose hospice over aggressive treatment often live longer and with less discomfort because the ill effects of chemotherapy can hasten death, Dr. Smith wrote in a review of the role of chemotherapy at the end of life, published in June in The Journal of the American Medical Association.

Some patients are just unwilling to acknowledge that nothing can save them, and want toxic treatment even if it means only one more day of life.

And sometimes patients are reluctant to relinquish treatment because they are terribly afraid of dying, of being alone cut off from care, Dr. Smith said in the interview. Patients may fear, with some justification, that if treatment stops the doctor will abandon them.

It is not only patients and their families who may insist on pursuing active treatment to the bitter end. Sometimes, doctors subtly or overtly encourage it. Oncologists may be reluctant to acknowledge that they can no longer sustain a patient. They may fear destroying a patient’s hope. Or they may be covertly influenced by the fact that their income comes from treatment, not from long discussions with patients and families about why palliative therapy should yield to supportive care.

In a related article, Brody shares a list of questions that patients who are considering palliative chemotherapy should ask their oncologists.

Profiles of Five Women Caregivers

This piece from the Rockford Woman (IL) magazine features the profiles of five women whose professional careers or personal lives involve caring for the elderly. Debra Adkins is the campus administrator for a facility that operates buildings ranging from independent living to a skilled nursing home on one campus. Teresa Colvin is a caregiver specialist for the Northwestern Illinois Area Agency on Aging. Beverly Bosselman is a certified hospice palliative care nursing assistant. Gloria Dawson is an author who wrote a book about caring for her mother and Shirley G. Sievers is a geriatric consultant and care manager.

NHPCO Urges Congressional Intervention as CMS Finalizes Rate Cuts

The Centers for Medicare & Medicaid Services (CMS) issued its final rule on the hospice wage index for fiscal year 2009. According to the National Hospice and Palliative Care Organization (NHPCO), this regulation will cut hospice reimbursement rates by phasing out the budget neutrality adjustment. The new Medicare reimbursement cuts will be implemented on October 1. NHPCO is encouraging hospice advocates to learn more about what these rates cuts will mean, and to connect with their representatives over the August Congressional Recess to ask them to intervene before October 1.

Online Discussion on Complicated Grief

Earlier we posted about an article that will appear in the October/November issue of Scientific American Mind about new research into the underpinnings of complicated grief, which is described as when the painful emotions associated with grief are so severe and prolonged they interfere with a person's ability to accept the death and resume their own life. This may occur in 10 to 20 percent of the bereaved.

This past Monday, Washington Post staff writer Rob Stein and UCLA researcher Mary-Frances O'Connor were online to discuss the study.

Munich, Germany: How do you diagnose and discriminate between complicated grief and depression? Also, if a person suffers from complicated grief, is he or she more likely to suffer from depression?

Mary-Frances O'Connor: There are several questions that people have about the difference (and similarity) between complicated grief and depression. They are different, with different symptoms. However, about 1/3 of people with complicated grief also have depression (just like you can have depression and anxiety). In the study that I did, I specifically interviewed the participants to determine if they had depression, and I excluded anyone who did. So the brain activation that I report on is just from complicated grief.

So, what is the difference? Scientific research has shown that in depression there is a sad mood about everything (and it is often felt to be all one's fault), but with complicated grief, the sadness centers just on the deceased (and so does any guilt). In depression, there is also often a loss of interest or pleasure in things, where as with complicated grief, there is still pleasure from thinking about the person who has died. Complicated grief also has intrusive images and thoughts about the deceased that come unexpectedly, which is not the case with depression.

Call For Recognition Of Palliative Care And Pain Treatment As Human Rights

On Monday, August 4, a Joint Declaration and Statement of Commitment calling for the recognition of palliative care and pain management as human rights was presented at the XVII International AIDS Conference in Mexico City. The International Association for Hospice and Palliative Care and the Worldwide Palliative Care Alliance were among the signers, including representatives of regional organization from Africa, Latin America, Eastern and Western Europe, Asia, and North America.

The seven goals in the Declaration are:

1- Identify, develop and implement strategies for the recognition of palliative care and pain treatment as fundamental human rights.

2- Work with governments and policy makers to adopt the necessary changes in legislation to ensure appropriate care of patients with life-limiting conditions.

3- Work with policy makers and regulators to identify and eliminate regulatory and legal barriers that interfere with the rational use of controlled medications.

4- Advocate for improvements in access to and availability of opioid analgesics (pain relievers) and other medications required for the effective treatment of pain and other symptoms common in palliative care, including special formulations and appropriate medications for children.

5- Advocate for adequate resources to be made available to support the implementation of palliative care and pain treatment services and providers where needed.

6- Advocate for academic institutions, teaching hospital and universities to adopt the necessary practices and changes needed to ensure that palliative care and pain positions, resources, personnel, infrastructures, review boards and systems are created and sustained.

7- Encourage and enlist other international and national palliative care, pain treatment, related organisations, associations, federations and interested parties to join this global campaign for the recognition of palliative care and pain treatment as human rights.

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.

Interview with a Geriatrician Trying to Revolutionize Nursing Homes

Caring.com posted an interview with Dr. Bill Thomas, a geriatrician who is working on a way to revamp nursing homes in the U.S. His current project is known as the Green House,

. . .groups of small, cozy homes that offer private bedrooms and baths, and "hearth rooms" with an open kitchen. Residents can eat when they want, sit by the fireplace, and take part in all house decisions. Meals are served around a big table, and some Green Houses bake bread or cookies daily and serve soup from a big tureen on the table to promote the feel (and scents) of home. There are now 41 Green Houses in ten states, but the Robert Wood Johnson Foundation recently provided a $15 million grant to Green Houses and the nonprofit group NCB Capital Impact to build more during the next five years.

Caring.com's features editor, Camille Peri, asks Dr. Thomas about the Green House concept and how it differs from the traditional nursing home facility.

How do Green Houses treat staff differently?

First off, the people who work with the elders in the Green Houses are called shahbazim. The shahbazim -- which comes from a Persian word meaning 'royal falcon' -- are what we call the midwives of elderhood. And here's the key: They work together as a team in a house and they are not part of the nursing department. The nurses are separate. So one thing we've done away with is the nursing assistant idea where, if you can't get a real nurse, you get a nursing assistant. We say that real hands-on care is so important and valuable that it has its own professional standing. And then the nurses, of course, also contribute a huge amount to the well-being of the elders. But the nurses and the shahbazim are partners, not bosses and workers.

Are long-term care residencies really necessary, or would it be better for people to take care of their parents at home?

There are nursing homes all around the world because there are millions and millions of people who need more care than their families can give them. As a geriatrician and a doctor, I have seen people go too far in care giving at home before they sought professional help much more often than I have seen people not go far enough. Many, many more people give up careers, income, job satisfaction, social life, their hobbies --give up so much to care for somebody they love at home. And I've seen that take a real toll on people's personal health and well-being.

So the issue I most often deal with is helping family caregivers realize: You've done more than anybody could ever expect you to do, and now it's time to bring in the professionals. And there's nothing wrong with that -- you've done what you can do. It's time to take the next step. Yet society layers on the guilt, and I don't approve of that.

My message to caregivers is: Don't give yourself over to guilt. The very fact that you're a reader at Caring.com -- that's like angel points in advance! So do the best you can, and when it's time to get more help, don't beat yourself up.

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.