Kansas Senior Press Service Weekly Newsletters Kansas Senior Press Service Weekly Newsletters By Lynn Anderson
Kansas Senior Press Service
When an elderly relative of Gloria Thomas Anderson was rushed to the hospital with a serious illness, the elder was not ready to deal with the business of her health care. As the nurses asked her about an advance directive, the relative became extremely upset and shouted, “What y’all tryin’ to do with me? Ain’t nobody gonna put me in a nursing home!”
The relative’s piercing words stayed in Anderson’s mind and provided the title for a booklet she has published for African Americans who may not be familiar with end-of-life issues.
Anderson’s booklet is titled What Y’all Gon’ Do With Me?(Let’s Talk About It): The African American Spiritual and Ethical Guide to End of Life Care. Anderson, 53, a master’s-level social worker, is well-equipped to provide guidance on these important but sensitive issues. For her master’s degree project, she conducted extensive research about the African American community’s response to life’s final stages, gathered copious resources, and made presentations to her peers. In the process, she developed expertise on the subject.
“Most people don’t want to deal with end-of-life realities,” Anderson said, noting that resistance is not just an African American phenomenon. “It’s a very difficult topic to embrace. But it’s helpful to let someone know what our wishes would be if we couldn’t speak for ourselves.”
Anderson has seen end-of-life dramas play out in the lives of many people close to her, “especially when the issues sit there, not addressed, and the family is then locked in battle when they need to be supportive of each other,” she said.
Anderson’s own mother recently suffered two strokes.
“We knew Mom’s wishes because we’d had a conversation a couple of months previously,” Anderson said. “She trusted us enough to tell us what she would want if she could not speak for herself. Fortunately, she is recovering — but we must all trust somebody enough to have that talk.
“I think it’s even more important now than I did when I started the research for my degree,” she said.
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The purpose of Anderson’s booklet is to increase awareness among African Americans about end-of-life issues in a way that can be easily understood and acted upon. The slim, 20-page booklet is conversational, rather than clinical. It’s written in language very familiar in the African American community, with elements of humor and gentleness but no-nonsense firmness. The care that went into the word choices is clear, and Anderson took that approach because she viewed it as essential to reaching her audience.
Distribution of the booklet is a collaboration between Anderson and Kansas City Hospice & Palliative Care. The hospice staff are using the booklet as a component of their educational materials as they serve a nine-county area that includes Johnson County.
The guide offers much of the same basic information on how to make good choices concerning end-of-life care that can be found in many other publications. But it’s very different in the way it addresses the specific needs and concerns of the African American population. And those needs are in fact very different, for reasons that stretch back hundreds of years and extend to the present.
Ethical decision-making encompasses much more than a medical dimension, Anderson said. It is important to understand the key factors that influence the needs of African Americans in ethical decision-making in end-of-life care:
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History. Many African Americans, particularly older generations, are acutely aware of the disparities in health care between blacks and non-blacks, Anderson said. Those disparities lead to deep mistrust, which may fuel a reluctance to make end-of-life decisions.
Much of the historic mistrust is linked to the infamous experiments in which the Public Health Service, working with the Tuskegee Institute, began a study in 1932, enrolling nearly 400 poor black men with syphilis from Macon County, Ala. The men were never told they had syphilis, nor were they ever treated for it. According to the Centers for Disease Control, the men were told they were being treated for “bad blood,” a local term used to describe several illnesses, including anemia and fatigue. For participating in the study, the men were given free medical exams, free meals and free burial insurance.
At the start of the study, there was no proven treatment for syphilis. But even after penicillin became a standard cure for the disease in 1947, the medicine was withheld from the men. The Tuskegee scientists wanted to continue to study how the disease spreads and kills. The experiment lasted four decades, until public health workers leaked the story to the media. By then, dozens of the men had died and many wives and children had been infected.
Many blacks remember, or have learned about, that painful and tragic episode. They are aware that most current research studies are still conducted with Caucasians. And many blacks believe that they will automatically be placed low on the priority list for organ and tissue transplants. Elderly and disabled patients have shared their feelings of mistrust with Anderson.
Spirituality and culture. Because of African Americans’ unique cultural history and value system, the decision-making process on end-of-life issues is often based on spirituality and religious influences.
“Research by the Pew Charitable Trusts shows that 50 percent of African Americans are believers, and most of them are evangelical Christians. However, many other African Americans have strong spiritual beliefs that are not tied to a particular faith,” Anderson explained. “But the medical model is physical and evidence-based, so it doesn’t incorporate the spiritual.”
Anderson gave an example of a doctor telling an elderly African American patient, “You have lung cancer and six months to live.” The doctor is doing what he is trained to do. But the patient’s response may be that God is the decider of life and death, not this disease. Some will refuse any life-extending measures, leaving everything in God’s hands. Others will accept all measures in the belief that to refuse medical aid is to “play God.”
Generational family values. Medical institutions demand considerable amounts of personal information, and for many African Americans, that is not easily or willingly shared — but physicians may view patients’ seeming lack of response as noncompliance, Anderson said.
She believes that such intense privacy comes from the whole history of slavery. “Blacks were valued entirely on their ability to produce, and their living and dying often hinged on being wise about when to talk and when not to talk,” she said. “This belief still exists in our community.”
When a family member is ill, African Americans also feel a strong sense of responsibility to care for their own, Anderson said. That’s a very Southern tradition that has been fractured by mobility, drugs, imprisonment, urban life, poverty and other socioeconomic and psychosocial factors.
So is deference to those in authority.
“For example, we may not look a doctor in the eye, but for us, it’s a respect issue,” Anderson said. “To the doctor, though, it can be seen as a sign that we are being evasive or dishonest.”
Too often, health care professionals don’t understand these cultural differences, leading to misunderstandings that can affect care. Many educational institutions are incorporating ethnic sensitivity into their curricula, with more course work and training on diversity and cultural issues.
“When practitioners make these mistakes, they’re not being evil people,” Anderson said. “They just may not be aware of the cultural differences.”
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Anderson sees her booklet as a tool both for elders and their adult children to approach the end-of-life discussion on their own terms.
She also believes that it’s crucial to educate people about hospice.
“The existence of hospice programs is an option available to the African American community,” Anderson said. “With its multi-disciplinary teams and holistic approach, hospice provides a way of dying with dignity.”
But, as Anderson notes in her booklet, 83 percent of Caucasians have used hospice care, as compared to only 8 percent of blacks.
Anderson believes that resistance to end-of-life issues is beginning to change with younger generations.
“My daughters have grown up with more inclusivity, so they are more trusting,” she said. “I’m hopeful. Knowledge is power. The more information you have, the better decisions you make.”
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Anderson is currently a clinical instructor at the University of Missouri-Kansas City School of Social Work, teaching practicum seminars and managing student field placements. Her interest in educating African Americans is an intellectual and spiritual passion.
“We all have to let go of each other eventually,” she said. “So I think it’s helpful for the people who love you not to be riddled with guilt.”
<Sidebar>
A guide to tough discussions — in tender terms
What Y’all Gon’ Do With Me? is organized into 14 sections, all gently gathering the reader into thought and decision-making about end-of-life issues. Here’s a brief rundown:
Individual copies of the booklet are available for free, and Gloria Thomas Anderson is available to make presentations about African Americans and end-of-life issues. For a copy of the booklet or to arrange a presentation, call Kansas City Hospice & Palliative Care, 816-363-2600.
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Lynn Anderson is the editor of The Best Times, a monthly newspaper for Johnson County residents aged 60 and over, a publication of Johnson Country Human Services and Aging.
By Kansas Senior Press Service
More than two million poisonings are reported each year to the 61 Poison Control Centers (PCCs) across the country. More than 90 percent of these poisonings occur in the home. The majority of non-fatal poisonings occur in children younger than six years old; and poisonings are one of the leading causes of death among adults. Be aware that childproof caps are not really child proof. They are only child-resistant, and if a child is given enough time they may be successful in opening the container.
Poisons come in four forms:
Solid Poisons – medicine, plants, powders, granular pesticides and fertilizers.
Liquid Poisons – lotion, liquid laundry soap, furniture polish, lighter fluid and syrup medicines.
Sprays – insecticides, spray paint and some cleaning products.
Invisible Poisons – gases or vapors. Carbon monoxide from hot water heaters and furnaces, exhaust fumes from automobiles, fumes from gas or oil burning stoves and industrial pollution in the air.
When preparing your home for a welcomed visit from grandchildren, great- grandchildren and young friends and neighbors, take particular time to consider potential poison hazards in your home and take appropriate necessary precautions.
For more information, call your local Poison Control Center.
Information provided courtesy of the Johnson County Public Health Department.
By Dave Farson
Kansas Senior Press Service
One time, when my wife and I were traveling in Europe, we spent a nice Saturday night at a musical concert in a Paris church. The edifice was large and old; the audience was small and manageable; the windows were stained with Biblical stories. There was an intimacy of purpose until the organ came to life, and then its power became the environment. It was quite an organ recital.
One time, here at home, four of us went out for breakfast. We were sitting in a booth with energetic voices all around us. It might have been a breakfast concert. However, a male voice from across the restaurant aisle drowned out the surrounding chorus as he loudly discussed his problems with his kidneys, colon and other body parts. It was quite an organ recital, and his fortissimo was neither needed nor approved.
Not wanting to invade the man’s privacy, yet unable to get away from his recitation of ills, we tried to carry on our conversation while forced to listen to his. We were inadvertent burglars, stealing snippets about the surgery and the “awful pain.” We learned that he had been in the hospital for six days and that his recovery had progressed to the point of eating out. For him, this was a breakfast to be celebrated.
It is often said that the day we are born, we begin to die. Well, I believe that spiritually, academically and socially, we continue to grow until our last breath. But I believe that the aphorism is true in biological terms. Biologically, we may be fragile creatures. And as we live beyond our three-score and ten, special diseases and organ deterioration naturally occur. In simple language, we are born to die.
It is not our natural failings that separate us; it is how we suffer. It is our attitude toward what are called “natural causes” that creates two kinds of people. There are those who suffer loudly. Theirs is a chorus of organ recitations. A polite inquiry about their well-being is followed by complaints forte! Theirs is a medical stage. They know the Latin names of every pill they take, and if they were younger in years, they would apply to medical school to fill out their resumes.
I prefer to suffer sotto voce. I believe an organ recital ought to be in a Parisian church, not an American restaurant. I believe our bodies always have a twitch or an itch, no matter our age. Pain is not reserved for the aged; pain is for the aging. Nor do our physical degenerations, our aches and pains, our hospitalizations, separate us from the crowd. If, indeed, we begin to age on the day we are born, then all of our ailments make us normal.
Yes, we can connect through our problems. We search for areas that allow bridge-building between strangers. It is so easy to be separate and so hard to be together. Still, let us not impose our medical histories on unsuspecting strangers or our friends. Let us be considerate enough to suffer without cruising the social seas looking for an audience for our ailments.
There are two kinds of people: those who stand and applaud at concerts and those who remain seated; those who sneeze loud enough for all to hear and those who cover their noises with social camouflage; those who share their physical ailments with the world around them and those who share only when directly asked.
In addition, there are those who believe that attitudes are beyond choice and others who believe that what happens may be beyond choosing, but our attitude toward what happens is within our choice.
I encourage you to age powerfully. I encourage you to play your best recital in the purview of your life. Finally, I applaud your strengths and I encourage you to consider the ears of those in your audience when you want to sing.
Dave Farson, of Overland Park, Kan., taught high school for 33 years and is now a free-lance writer.
By Kansas Senior Press Service
When it comes to recurrence, breast cancer survivors can do a lot more than cross their fingers, according to a recent study.
The study tracked female breast cancer survivors, starting two years after their recovery. Breast cancer recurrence was lower for survivors who ate a diet rich in fruits and vegetables after treatment, compared to survivors who did not.
Eating fruits and vegetables raises blood levels of nutrients called carotenoids, which might be the reason the first group had a lower cancer risk. And even though the results of similar studies are inconsistent, cancer experts at the American Institute for Cancer Research insist that eating a plant-based diet may be essential to cancer prevention.
The breast cancer study analyzed a population of 1,500 female breast cancer survivors two years after entering remission. The population was divided into two groups — those with high levels of carotenoids (fruit and vegetable eaters) and those with low levels (those who did not eat fruits and vegetables regularly). After seven years, the first group demonstrated 43 percent less risk of developing breast cancer than the second.
Many people know that it’s important to eat fruits and vegetables as part of a healthful diet but are unsure why these foods may help prevent cancer. Carotenoids are molecules that may help block or repair damaged cells that might otherwise become cancerous. Carotenoids may also slow the growth of cancer cells and stop the self-destruction of healthy cells.
Carotenoids are present in plant foods such as fruits and vegetables, which is why it may be beneficial to eat them to prevent cancer.
Carotenoids are mostly found in orange, yellow, dark red, and green fruits and vegetables. But instead of just focusing on these colors, try to eat an overall variety of fruits and vegetables because others also may also protect against cancer. For instance, some studies show that purple, green, and white fruits and veggies also may offset development of cancer because of their cancer-fighting phytochemicals.
This breast cancer study is not subject to the human error of similar studies that rely on participants to report daily consumption. Instead, it reports a precise numeric value of carotenoid levels in the blood. This type of study suggests that it is a wise choice to regularly eat fruits and vegetables, regardless of your cancer status.
Source: The American Institute for Cancer Research
These articles are also available electronically at the Center on Aging Website: http://www2.kumc.edu/coa/Senior_Press_Article/Topic_Index.htm