Religion 101 Genie Hamlett, RN, NHA
The following is an extended learning section for Religion 101.
You will NOT receive a test on the extended learning.
***** NAB has changed it's regulations for all Distance Learning CEU offerings effective May 1, 2012. Workshops are still: 1 hour attended = 1 CEU.
Instead of 15 typed pages, double-spaced in 12 font = 1 CEU, now the requirement is: 12,000 words = 1 CEU.
This, in effect, has tripled the sizes of home study or internet courses. Any comments can be directed to: The Chair of the Continuing Education Committee: Mary Ellen Wilkinson at: [email protected] - or- The Executive Director of NAB, Randy Lindner at: [email protected]
As we have done for 20+ years, we will try to make earning your hours as enjoyable and as painless as possible. For additional hints, please call: 1-888-359-9600.
Genie Hamlett, Owner, NHA, RN Extended Learning
We as health care providers are not well versed in a variety of cultures, ethnicity, or the religious beliefs that accompany them. There is no way staff in any facility can know all the important culture-specific features of residents of all backgrounds. However, the staff should and can know the prevalent diseases specific to different ethnic groups, the prevalent religious beliefs, traditions, rituals and attitude, language or social differences.
One of the biggest and most important areas that all staff needs to be well versed in is the different patterns of health decision-making that will be encountered by the families and residents. Who controls health care decisions varies enormously from culture to culture, from ethnic background to social skills within a group, and within each religion.
There are four components which make up ones heritage. They are culture, ethnicity, religion and, socialization. Heritage relates to the how strictly one sticks to their beliefs and the time honored practices of their traditional cultural system whether it is European, Asian, African, or Hispanic. The values a resident holds dear can be both traditional, which most 80, 90 and 100 year olds in health care facilities honor or can also be more modern. Their grandchildren may observe some of the traditional cultural beliefs and also mix these beliefs with a modern system. These mixtures may consist of four components: culture, ethnicity, religion, and socialization. We will elaborate on these further on in this section but let's look at some important things to remember regardless of someone's heritage.
Advice for All: 1. Do not assume that residents or families will view the world the same way that you do. 2. They look at the world though different lenses and their experiences color their interpretation of what they see. 3. Barriers may include language, medical terminology, ability to read and write, beliefs that positively or negatively influence compliance with health care, different concepts of time, quantity, quality, descriptive words. 4. Remember the resident has spiritual needs, physical needs, mental and emotional needs. 5. See resident as part of a family unit. See the resident as an individual. These two worlds may conflict. 6. Do not assume that you know best. Their differences may mean that what you hold as best is only your viewpoint and their viewpoint is just as valid as yours. 7. Foster and make sure the resident knows he/she is respected for who they are. 8. If family structure and the culture the resident is from, dictates that family is
2 included in decision making, make sure the family knows he/she is respected.
The extended learning is divided into the following topics:
Native American Spirituality and Health An introduction to Native American history and religion and two reports on tobacco use and mental health.
Culture and Religion An introduction to cultural differences and their influence on health, with snake handling as a detailed example.
Religious Traditions An introduction to spiritual traditions, with bottle trees as a detailed example.
Spirituality and End of Life Care An introduction to spiritual care for the terminally ill, with an extensive study on spirituality and cancer care.
Federal Regulations Federal regulations which apply to meeting a resident’s individual needs.
3 Native American Spirituality and Health
History of Native Americans
The American continents have been home to Indian people for a thousand generations.
The Indian people developed their own forms of art, as well as political and social structures. They established mathematics, handicrafts, religious belief systems, styles of writing, and methods of agriculture. The Native Americans originated when the first human footprint appeared on the northern continent. These people, who are often referred to as Paleo-Indians, are a group of people with very little known about them. Nobody knows what type of clothes these first Americans wore, how they interacted, what language they spoke, and why they chose to leave their ancient homelands and come to
America (Thomas, Miller, White, Nabokov, and Deloria 25-35).
While little is known about the Native Americans, it is believed that they were not a primitive group of people with ragged appearances. It is thought that the Native
Americans appeared much the way that American Indians look today. With them, the
Indians brought many basic survival skills including the knowledge of making fires, effective means of feeding and establishing shelter, and ways to clothe themselves. After they immigrated to America, the Indians lived in small groups with their relatives. In these groups, they were able to enjoy social interactions with one another and share in
4 their supernatural beliefs. While some of their living situations were unstable and the environment was not conducive to their needs, they were able to feed their families and guard their lands (Thomas, Miller, White, Nabokov, and Deloria 25-35).
While their original language is unknown, the Indians would eventually speak more than two thousand languages, most of which developed in the Americas. This strong diversity in linguistics was caused by the large migrations of Native Americans who drifted to the
Americas in waves. As the population of Indians living in America expanded, so did the different varieties of languages (Thomas, Miller, White, Nabokov, and Deloria 25-35).
Beginning from the moment that they arrived in the Americas, Native Americans began to domesticate many different types of plants that they used for food. Using solar calendars that they established, the Indians were able to chart their farming cycles, astronomical observations, and celebrations. Throughout their times in America, the
Indians began to develop many different traditions that would be passed down through the generations. Through the first thousand generations of America, the Indian people were able to develop their own world (Thomas, Miller, White, Nabokov, and Deloria
25-35).
The American Indian life originates back to the beginning of humanity to a time where the entire earth was fused into a single super-continent known as Pangaea with the Pacific
Ocean covering half of the globe. More than 200 million years ago, Pangaea split into
5 two separate landmasses. The landmass to the north was Laurasia and the landmass to the south was Gondwanaland. Once Pangaea split into two landmasses, new bodies of water began to surge in between the new masses forming oceans. The oceans further split the fragments of land which developed the areas appear to be the water-locked continents that we have today. The movement of the plates beneath the Earth’s surface gave way to the boundaries of western America. The collision of plates caused mountain ranges such as the Alps, Himalayas, and Rockies. As the continents separated, life continued to emerge on the land (Thomas, Miller, White, Nabokov, and Deloria 25-35).
Fossils of the “southern ape,” which emerged on the African plane, have been found in northern Ethiopia. These fossils were named Lucy, and as excavators continued to search, more relatives of Lucy were also discovered. These relatives that had evolved from Lucy exhibited adaptations and were large-brained hominids that were called Homo habilis. It was not until 1.5 million years ago that the first human form appeared as was classified as
Homo erectus by paleontologists. The population continued to grow and the continent of
Africa was eventually unable to contain the Homo erectus. Eventually, they began to migrate north toward the Middle East before making it to Europe and Asia. The species of Homo erectus was able to remain stable until they encountered the Neanderthals, who were more evolved. The Neanderthals, or Homo sapiens, began to evolve into humans similar to those we know today. It is uncertain as to whether the Neanderthals evolved into human directly in Asia, Europe, and Africa, or if they only evolved in Africa alone.
The “Out of Africa” theory suggests that all living humans originated from Eve, the first
6 and sole mother, and living for nearly 200,000 years in South Africa (Thomas, Miller,
White, Nabokov, and Deloria 25-35).
It was not until 40,000 years ago that Homo sapiens sapiens appeared. These people were considered completely human, or Cro-Magnon. These humans were skilled and were able to develop their own tools using resources from the environment such as stone, antlers, and bones. While originally having very dark skin from Africa, their skin color began to progressively lighten to the color that most Indians are today. They continued to journey eastward until some eventually came in contact with Australia. They were able to reach the continent because the water level of the sea was low enough to allow access by foot.
It was in Australia that some of the Native Americans constructed boats that would allow them to navigate across the open water on their first sea voyage (Thomas, Miller, White,
Nabokov, and Deloria 25-35).
As the people of Australia were beginning to set out on their voyage across the ocean, the pioneers who lived to the north began to move east toward the Siberian tundra. These people used every resource available to them in order to survive. They were able to use the bones of mammoths and their tusks to burn as fuel and provide the framework for their homes. These pioneers lived in larger communities and often shared homes with many other families. As the different groups of Natives began to emerge, the continents continued to separate into different sections (Thomas, Miller, White, Nabokov, and
Deloria 25-35).
7 The Native American Indians live in present-day North America and extend into parts of
Canada and Hawaii. They are extremely diverse and come from many different cultures and ethnic groups. The Native American Indians today still practice many aspects of the traditional Native American religion. Because the Native Americans did not have a written language, many of their customs and traditions were passed down through the generations by spoken word. The Iroquois, Dakota (Sioux), and Apache tribes are some of the most prominent tribes still found in the United States. Each tribe varies in religious practices and traditions (Thomas, Miller, White, Nabokov, and Deloria 25-35).
Iroquois Tribe
The Iroquois tribe, which originated out of the eastern woodlands, is considered one of the most organized tribes. This tribe of Native Americans made up the area that we now know as New York with a lot of its influence overflowing into Canada. Because their environment was filled with fertile soil and streams of water with an abundance of fish, the Iroquois survived primarily off of agriculture and their hunting and gathering skills.
Since they developed a prosperous tribe and community, they were able to construct a systemic belief system that focused on a primarily monotheistic belief in an all-powerful creator (Ruvolo). They referred to their creator as the “Great Spirit” or "Ha-wen-ne-yu."
The Great Spirit was the being who they believed created the human race, the plants, animals, and everything good in nature. While most of their attention was focused on the
Great Spirit, the Iroquois also believed in other deities as well. Thunderer and Three
8 Sisters were also considered in their religion. The power that was given to these lesser spirits was dictated by the Great Spirit. The Evil Spirit, "Ha-ne-go-ate-geh,” was the brother of the Great spirit and was thought to oppose the Great Spirit and was responsible for all of the bad fortune and disease. In their culture, the Iroquois believed that it was impossible to communicate directly with the Great Spirit, so they used methods such as burning tobacco plants to carry their prayers to the good spirits who would then relay them to the Great Spirit. In the Iroquois culture, dreams are regarded as extremely important and the interpretation of dreams is a talent that is held in very high esteem
(“Countries and Their Cultures").
The Iroquois practiced ritual ceremonies based on rituals that had been handed down throughout the generations. They would often hold festivals during important periods of agriculture. During these festivals, the people of the Iroquois tribe would worship the
Great Spirit and give their thanks for the protection that they received and for their survival and good fortunes. Keepers of the Faith, or "Ho-nun-den-ont,” were in charge of leading the festivals and ensuring that the rituals were performed properly. These keepers were appointed to their position by matrisib elders. This title was one that was considered to be of high prestige (Ruvolo). The Iriqouis participated in six major ceremonies each year: Maple, Planting, Strawberry, Green Maize, Harvest, and Mid Winter festivals. The first five festivals were all similar in that they included confessions, speeches by the
Keepers of the Faith, lots of prayer, and offering of tobacco. The Mid Winter festival took place in February and was a festival where interpretations of dreams were made and a
9 white dog was sacrificed in order to get rid of the evil that surrounded the people
(“Countries and Their Cultures").
Dakota Tribe
Another one of the major Native American tribes was the Dakota, or the Sioux. This tribe of Indians most populated the great plains near North and South Dakota. The Sioux were much more spread out than the Iroquois which led to them being less developed and organized. Because of their location, their primary focus was buffalo hunting. The buffalo was able to provide the Sioux people with the majority of the things that they needed in order to survive. Since buffalo move in herds and do not stay in a constant area, the Sioux did not establish permanent homes or settlements. They lived a nomadic lifestyle where they followed the herds of buffalo throughout the plains. The Sioux exhibited an oneness with nature and lived a lifestyle that was very united with one another. They believed that there was no separation between the natural world and the supernatural world. Due to their belief in this unity, they established a religion in which the underlying force behind this unity was known as the Wakan Tanka. The Wakan Tanka was a being that was described as being indescribable and completely unable to comprehend. The Sioux believed that every object in the natural world contained a spirit that they called wakan.
Wakan Tanka used Wakan people to conduct interactions with the natural world and to control the actions of the Sioux men. Because the Sioux believed that life was incomprehensible, they also believed that life, growth, and death were impossible to understand (Ruvolo).
10 The following information was detailed by The Sioux Poet. The creation story of the
Sioux was the human race formed from Mother Earth’s womb. The Sioux tribe had many different symbols and stories that they believed were of high importance. The medicine wheel is a spiritual symbol of the Sioux tribe in which the shape of the wheel is representative of the cycle of life and death. The medicine wheel contains a cross in it’s center that represents the four directions. Each section of the cross is a different color.
The section facing north is red which symbolizes wisdom. The section pointing east is yellow and stands for family. The point of the cross that points towards the south is white which represents youth and friendship. Lastly, the section that points toward the west is black, standing for adulthood (“Sioux Poet- Native American Poetry").
Another important symbol of the Sioux tribe is the dream catcher. The dream catcher originates from a legend in which an old Lakota spiritual leader was on the top of a mountain when he had a vision. In his vision, a spider appeared that was actually Iktomi.
Iktomi was a trickster who, in the dream, picked up the leader’s willow hoop and began to spin a web around it. While spinning the web, the spider spoke about the cycle of life to the Lakota leader. Iktomi explained to the leader that during life, there are good and bad forces that arise. He stated that if you listen to the good forces, they will send you in the right direction, but listening to bad forces can hurt you and send you in the wrong direction. Once he finished spinning the web, Iktomi told the spiritual leader to use the web to help his people. He explained that good ideas will be trapped in the web and that
11 bad ideas will flow through the hole that he left in the center. The Lakota leader passed his vision on to his people. Because of his vision, many Sioux place a dream catcher above their beds in order to help them sift through good and bad thoughts and ideas
(“Sioux Poet- Native American Poetry").
Another legend of the Sioux tribe is the Legend of the White Buffalo. The legend is told in each of the three different Sioux tribes: Lakota, Dakota, and Nakota. Each type of the
Sioux tells the legend similarly with the same outcome. In the legend, the Sioux people lost their ability to communicate with their Creator. Because of their loss of communication, the Creator sent the White Buffalo Calf Woman to teach the people of the Sioux how to communicate by prayer through the use of a sacred pipe. Seven Sacred
Ceremonies were conducted using the pipe. The purpose of these ceremonies was to ensure a peaceful and harmonic future. As the legend goes, a couple warriors were hunting across their land when they encountered a woman. One of the warriors noticed her stunning beauty before recognizing her as a Wakan. The other warrior chose to go towards the woman because his desire for her was overwhelming. The beautiful woman entranced the warrior and drew him to her. As he approached, a cloud of dust erupted around them, concealing them from the outside world. Once the dust settled, all that remained was the beautiful White Buffalo Calf Woman standing next to a pile of bones that once made up the body of the warrior. The White Buffalo Calf Woman explained to the other living warrior that she had given the dead warrior what he wished for. He was granted his wish to live a lifetime and then he died and decayed. The other young hunter
12 returned to his tribe to tell them of the events that had occurred. He was instructed by the
White Buffalo Calf Woman to prepare his tribe for her arrival and to teach the tribe to pray. Upon the White Buffalo Calf Woman’s return to the tribe, she brought with her a sacred pipe that she used to teach the Native Americans the seven prayers. The prayers take place in ceremonies and include the Sweat Lodge for purification, the Naming
Ceremony for child naming, the Healing Ceremony to restore health to the body, mind, and spirit, the adoption ceremony for making of relatives, the marriage ceremony for uniting male and female, the Vision Quest for communing with the Creator for direction and answers to one’s life, and the Sun Dance Ceremony to pray for the well-being of all the People. After teaching the natives how to pray, the White Buffalo Calf Woman left on the pretence that she would return to gather her sacred bundle which included her pipe.
She also informed them that she had four ages within her and during each age she would look back at the people of the tribe. Once she reached the fourth age, she would return to restore harmony to their tribe and their land. The White Buffalo Calf Woman left the natives, and as she was walking away, she sat down. Upon standing again, the White
Buffalo Calf Woman transformed herself into a black buffalo. She arose again and continued to walk. After several steps, she laid down on the ground. When she got up this time, she was no longer black, but yellow. She repeated this process and arose as a red buffalo before the last cycle when she returned to her white color. Her change of color was a representation of the fulfillment of the White Buffalo Calf prophecy. It also represents the four colors of man and the four directions on the compass (“Sioux Poet-
Native American Poetry").
13 Apache Tribe
The last major group of Native Americans that lived in North America was the Apache
Tribe. The Apache tribe resided in the mountains and plains near New Mexico, Arizona, and Mexico. They migrated to the United States from Alaska and Canada. The Apache tribe is made up of six different smaller tribes, often referred to as subtribes. These subtribes include the Western Apache, Chiricahua, Mescalero, Jicarilla, Lipan and Kiowa.
Each of the subtribes originates from a different region, thus they are also divided into six regional groups: Western Apache - Coyotero - most of eastern Arizona which include the
White Mountain, Cibuecue, San Carlos, and Northern and Southern Tonto bands. The people of the Apache tribe lived nomadic lifestyles where they moved around based on the locations of the herds of buffalo (“Great Dreams"). The religion of the Apache tribe focused on one creator, Ussen. They also believed in lesser gods who were beneath Ussen
(“Religion”). Because the Apache tribe’s lifestyle was so nomadic, they did not focus on developing an organized religion. There society was not centered on agriculture, so they did not celebrate any annual gatherings. With so much attention focused on survival, the
Apache did not place any value on religious practices or the belief in an afterlife. What little religion that did exist in the Apache tribe had very little depth or organization and was headed by shamans, or healers (Ruvolo).
Tobacco Use and Native American Health
14 Since Native American spiritual rituals often included smoking tobacco, it is important to know about the health impacts of these rituals and long term use of tobacco products.
Here is information from the Center for Disease Control and Prevention (CDC) based on findings from the Surgeon General detailing tobacco use in Native Americans:
Tobacco has long played an important role in the cultural and spiritual life of North and
South American Indians and Alaska Natives. When the Europeans colonized the
Americas, tobacco already was being cultivated and used in many parts of the continent.
Early European explorers documented the cultivation and farming of tobacco and its extensive use among tribes throughout most of North and South America (Hodge 1910;
Linton 1924) and in Alaska’s interior (Sherman 1972)—findings that have been supported by archaeological discoveries at a variety of sites (Haberman 1984).
When Europeans first arrived in the Americas, tobacco served various purposes among
American Indians and Alaska Natives, including ceremonial, religious, and medicinal functions (McCullen 1967; Seig 1971; Ethridge 1978). In ceremonial and religious rites, tobacco was a significant part of sacramental offerings. For example, tobacco was used to ensure good luck in hunting and to seal peace and friendship agreements. When used for medicinal purposes, tobacco often was mixed with other substances in topical ointments and ingested for internal healing. For example, in the northwest region of North America, tobacco was combined with shell lime powder and then formed into small marble-sized balls that were dissolved in the mouth (Linton 1924). Tobacco smoke often was used
15 during prayers to aid in healing and was prescribed to cleanse people, places, and objects of unwanted spirits. Tobacco smoke also was used at the beginning of meetings as a ritual to cleanse the room and secure the truth from the spoken word.
Early inhabitants of the American continent also inhaled tobacco smoke (Linton 1924).
They often placed burning or smoldering tobacco on the bare ground or on a mound and then waved the smoke toward their faces using the palms of their hands. Early inhabitants also smoked rolled sheets of dried tobacco leaves (cigars) and wrappings of cut tobacco, and they smoked tobacco through a flaxen reed. The most common way to smoke tobacco was to place cut tobacco within the bowl of a calumet—either a stone or a hollowed-out bone pipe (Linton 1924).
Tobacco smoking was part of many solemn occasions among American Indians, such as when leaders met (Paper 1988). In some tribes, the pipe became such a powerful object that it was considered sacred. Only certain individuals could use the pipe, and only sacredly gathered tobacco could be burned in a pipe’s bowl (Linton 1924). The Hopi
Tribe used tobacco religiously, blowing smoke in the four sacred directions to invoke good planting and to encourage rainfall. Other tribes, such as the Delaware, Iroquois, and
Sioux, smoked tobacco during prayers, at the opening of the sacred bundle—a collection of religious artifacts (Paper 1988). Tobacco also was used between enemies in battle to signify a truce. If one party offered the pipe and the other party accepted it, this signified the end of the battle, and both parties would then put down their weapons. As a result, the
16 smoking of tobacco leaves, often with the peace pipe, became associated with the
American Indian as a common symbol that had significant positive social and cultural connotations.
During the 1700s, tobacco became one of the most important commodities traded among
American Indians and Alaska Natives. For example, Alaska Natives in the Arctic and sub-Arctic regions depended on trade with tribes from the east and south of the North
American continent to obtain tobacco products (Fortuine 1989). Among the items traded were special smoking vessels, such as pipes made of stone quarried in what is now
Wisconsin and Minnesota (Linton 1924; Paper 1988).
With the European colonization of the American continent, tobacco became known in
Europe, where it was at times expressly forbidden, primarily because of health concerns about the dangers of tobacco spitting. Following tobacco practices in the Americas, early
European explorers smoked tobacco the way it was smoked by American Indians (Linton
1924). Indeed, many of the pipes these explorers used were fashioned after tribal pipes.
Europeans also adopted many of the tribes’ medicinal uses of tobacco. However, the use of tobacco for recreational purposes was widely accepted and soon became primary.
Europeans also began to chew tobacco raw rather than in a mixture of powdered shells or roots, as was the custom of North American tribes.
17 Most early American Indian tobacco harvesting was done with farming technologies that originated in the Southern part of North America (Paper 1988). For example, nonfarming nomadic tribes and light farming tribes scattered tobacco seeds on holy grounds near waterways or marshes and let the plants grow without much cultivation. In fact, the
Iroquois prohibited their people from cultivating tobacco plants or coming in contact with them while the plants were growing to maturity. Other tribes, such as the Blackfeet,
Crow, and some Northern Plains Indian people, grew tobacco plants instead of food crops in small sacred patches for medicinal and ceremonial uses (Linton 1924).
Over the centuries as American Indians and Alaska Natives experienced vast cultural and political upheaval, their attitudes about tobacco changed significantly. Today, among some contemporary American Indian and Alaska Native groups, tobacco use has lost some of its traditional attributes and no longer is endowed with the same special meaning. However, some American Indians have maintained the traditional practices associated with tobacco. For example, tobacco is given as a gift to traditional healers and dancers at powwows and many other social gatherings, and it is presented to honor persons celebrating important events, such as marriages. Many American Indians consider tobacco to be a medicine that can improve their health and assist in spiritual growth when used in a sacred and respectful manner. It is important to recognize the positive social context in which tobacco is viewed in American Indian communities and to recognize the difficulties these connotations may cause in preventing tobacco use among youth and helping adults to quit. It is possible that tobacco control efforts could be
18 enhanced by emphasizing the distinction between sacred uses of tobacco on ceremonial occasions and addictive tobacco use by individuals. An additional complicating factor for tobacco control efforts among this population is that American Indians have become increasingly reliant on tobacco sales and on the revenues these sales bring to the reservations.
While tobacco played a significant role in religious and spiritual practices for the Native
American cultures, statistics from the Center of Disease Control show what factors influence the use of tobacco in Native Americans: Data assessing long-term trends in tobacco use among American Indians and Alaska Natives have been unavailable, for the most part, because national surveys and databases have only recently begun to identify persons of American Indian or Alaska Native ancestry. Studies using data from regional surveys or data on specific American Indian tribes have, however, provided useful information about tobacco use among members of these groups. Because the geographic location of American Indian and Alaska Native people reflects unique cultural and historical experiences, researchers should consider these differences when interpreting region-specific data about smoking prevalence. Data from regional studies also may provide information that is useful in developing culturally appropriate tobacco control efforts.
National surveys provide limited capability to assess the level of tobacco use and the effectiveness of tobacco control efforts among American Indians and Alaska Natives. The
19 NHIS, for example, did not begin identifying American Indian and Alaska Native respondents until 1978. Because American Indians and Alaska Natives make up a small proportion of the U.S. population, data must be aggregated from several years to provide meaningful estimates.
Also noteworthy is that the data on tobacco use among American Indians and Alaska
Natives include some ceremonial use (e.g., in pipes) in addition to daily addictive behavior. Anecdotal information also suggests that standard definitions and classifications of smoking may not accurately reflect smoking habits among American Indians, some of whom may smoke no more than one or two cigarettes per day (Nathaniel Cobb, personal communication, 1994; Roscoe et al. 1995). Yet American Indians who smoke a few cigarettes every day are classified in the <15-cigarettes-per-day category, which may imply a higher overall consumption than actually exists. Such differences in amounts of daily smoking may have important implications for the design of culturally appropriate smoking cessation interventions targeting American Indians.
Prevalence of Cigarette Smoking
Among American Indian and Alaska Native men and women, rates of smoking have been substantially higher than smoking rates in any other U.S. subgroup. In the 1987 Survey of
American Indians and Alaska Natives (SAIAN) of the National Medical Expenditure
Survey, 32.8 percent of respondents reported being current smokers (Lefkowitz and
Underwood 1991). This survey—the only nationally representative sample designed to assess the health practices of people of American Indian and Alaska Native ancestry—
20 targets people who live on or near reservations and who are eligible for services provided by the Indian Health Service (IHS). The NHIS rate of smoking among American Indians and Alaska Natives for 1987 and 1988 (39.2 percent) was greater than the SAIAN estimate, perhaps because of different modes of administration and sampling (tribally enrolled beneficiaries in the SAIAN and the general population of American Indians and
Alaska Natives in the NHIS).
In a more recent survey—conducted on reservations between 1989 and 1992 and involving 4,549 American Indians 45–74 years old in 13 tribes in Arizona, North Dakota,
South Dakota, and southeastern Oklahoma—the prevalence of cigarette smoking was higher in nearly all American Indian groups (40.5 percent for men and 29.3 percent for women) than in the general U.S. population, but wide variation was notable (Welty et al.
1995). In this study, known as the Strong Heart Study, the smoking prevalence was highest in North Dakota and South Dakota (53.1 percent for men and 45.3 percent for women) and lowest in Arizona (29.7 percent for men and 12.9 percent for women).
According to the NHIS data, the overall prevalence of cigarette smoking among
American Indians and Alaska Natives was 48.2 percent in 1978–1980 and 39.2 percent in
1994–1995. Although the data are imprecise, they suggest a substantial drop in prevalence for men from 1978–1980 to 1983–1985 (Table 13) (NCHS, public use data tapes, 1978–1995). However, no progress for men was observed from 1983–1985 to
1994–1995 and, for women, no progress was observed from 1978–1980 to 1994–1995.
21 Another major source of data on smoking patterns among American Indians and Alaska
Natives is the BRFSS, which, for these analyses, included data collected in 47 states and the District of Columbia (CDC 1992a). The BRFSS data for 1987–1991 show that among
American Indians and Alaska Natives, 33.4 percent of men and 26.6 percent of women reported that they were current smokers. The 95 percent confidence intervals associated with smoking rates overlap between American Indian and Alaska Native women and men in both surveys. Even though data were aggregated for several years, the small sample sizes of American Indians and Alaska Natives in both surveys produced imprecise estimates that make it impossible to determine whether the prevalence of smoking actually differed between men and women. The prevalence of smoking among American
Indian and Alaska Native women in the NHIS (35.2percent in 1987–1988 and 37.2 percent in 1990–1991) differed substantially from the prevalence found in the 1987–1991
BRFSS (26.6 percent). Similarly, the prevalence of smoking among American Indian and
Alaska Native men in the NHIS (43.5 percent in 1987–1988 and 32.9 percent in 1990–
1991) differed appreciably from the prevalence found for men in the 1987–1991 BRFSS
(33.4 percent). Methodological differences between the surveys may explain these differences. Household, face-to-face interviews were conducted for the NHIS, whereas telephone interviews were performed for the BRFSS (Goldberg et al. 1991; Sugarman et al. 1992; Leonard et al. 1993). Because telephone coverage in the areas where American
Indians and Alaska Natives live tends to be lower than in areas where other ethnic groups live (Goldberg et al. 1991; Sugarman et al. 1992), sometimes as low as 60.4 percent of households (U.S. Bureau of the Census 1994), American Indians and Alaska Natives
22 probably were less likely than others to have been included in the BRFSS surveys.
Moreover, because telephone service requires financial ability to pay, persons of higher socioeconomic status may have been more likely than other persons to be included in the
BRFSS surveys (Thornberry and Massey 1988). Thus, the BRFSS may have yielded lower smoking rates than the NHIS because the BRFSS surveys selected more affluent respondents, who were less likely than others to smoke. Estimated rates and trends in cigarette smoking were not significantly related to educational attainment, according to
NHIS (Table 13) and SAIAN data. However, both surveys suffered from imprecision because of small sample sizes.
Number of Cigarettes Smoked Daily
NHIS data for 1978–1995 show few variations over time in the number of cigarettes smoked per day among American Indian and Alaska Native smokers (Table 14) (NCHS, public use data tapes, 1978–1995). In the years 1978–1980, 39.9 percent of American
Indian and Alaska Native smokers reported smoking fewer than 15 cigarettes per day, and
25.2 percent reported smoking 25 or more cigarettes per day. By 1994– 1995, the proportion of American Indian and Alaska Native smokers who smoked fewer than 15 cigarettes per day was 49.9 percent, whereas the proportion who smoked 25 or more cigarettes per day was 17.0 percent. Data from the Strong Heart Study showed that
American Indian smokers reported smoking fewer cigarettes per day (range of 6.1 among women in Arizona to 15.0 among men in North Dakota and South Dakota) than the national average (Welty et al. 1995).
23 In the years 1978–1980, American Indian and Alaska Native men were more likely than women to smoke 25 or more cigarettes per day (Table 14). Since 1980, however, the proportion of men smoking 25 or more cigarettes per day has declined.
Cigarette consumption data from the BRFSS and the NHIS cannot be compared directly because the BRFSS data are for the mean number of cigarettes smoked daily (CDC
1992a). However, both sources of data indicate that the number of cigarettes smoked is slightly greater among older than among younger American Indians and Alaska Natives.
Quitting Behavior
24 State and regional surveys also indicate that the prevalence of smoking cessation remains relatively low among American Indian and Alaska Native smokers compared with smokers in other racial/ethnic groups (Goldberg et al. 1991; Lando et al. 1992). In the past 17 years, the percentage of American Indians and Alaska Natives who have ever smoked 100 cigarettes and have quit smoking has changed only slightly overall; NHIS data indicate that the prevalence of cessation was 31.6 percent in 1978–1980 and 32.9 percent in 1994–1995 (Table 15) (NCHS, public use data tapes, 1978–1993). During this period, the prevalence of smoking cessation fluctuated substantially for both genders, with similar estimates reported for 1978–1980 and 1994– 1995. The prevalence of smoking cessation among American Indians and Alaska Natives has increased with increasing age: those aged 18–34 years have had the lowest prevalence of cessation, those aged 35–54 years have had intermediate proportions, and those aged 55 years and older have had the highest prevalence of cessation. The prevalence of cessation increased among older American Indians and Alaska Natives; however, no progress occurred among those aged 18–54 years. Interviews with patients at urban IHS clinics in
Milwaukee, Minneapolis, Seattle, and Spokane also showed a low prevalence of cessation (29.7 percent) (Lando et al. 1992), compared with 45 percent reported for the total U.S. population during the same time.
Data from the NCI Supplement of the 1992–1993 CPS indicate that among American
Indians and Alaska Natives aged 18 years and older who were daily smokers one year before being surveyed, 62.8 percent reported that they were still smoking daily and that
25 they had not tried quitting for at least one day during the previous year (Table 4). Another
28.9 percent had tried quitting for at least one day, 3.7 percent were occasional smokers
(i.e., smoked only on some days), 1.8 percent had not smoked for the past 1–90 days, and
2.8 percent had not smoked for the past 91–364 days. This distribution was similar to that among whites.
26 27 Women of Reproductive Age
Since 1978, rates of smoking have remained strikingly high among American Indian and
Alaska Native women of reproductive age (18–44 years) participating in the NHIS (Table
16) (NCHS, public use data tapes, 1978–1995). Between 1978 and 1995, the prevalence of cigarette smoking among reproductive-aged American Indian and Alaska Native women changed little overall, and the data are not precise enough to allow meaningful comparisons according to educational attainment.
A recent study by Davis and colleagues (1992) confirms that the prevalence of smoking is higher among American Indian women of reproductive age than among their counterparts in other racial/ ethnic groups. The investigators analyzed birth certificates issued in
28 Washington state between January 1, 1984, and December 31, 1988, and found that the prevalence of smoking among American Indian mothers, adjusted for maternal age and marital status, was 1.3 times higher than the prevalence among white mothers.
Data from the 1988 NMIHS indicate that 35 percent of American Indian mothers sampled reported smoking cigarettes in the 12 months before delivery (Sugarman et al. 1994).
Recent birth certificate data from U.S. final natality statistics show that 20.9 percent of
American Indian and Alaska Native mothers smoked during pregnancy (Ventura et al.
1997), a slight decline from 23.0 percent in 1989 (Table 6). The prevalence of smoking among American Indian mothers was higher than all groups in 1989–1995 (Table 6).
Regional and Tribal Tobacco Use
Cigarette Smoking
29 Although a high rate of smoking has been estimated nationally for American Indians and
Alaska Natives, regional and state differences in tobacco-use patterns are evident when
1988–1992 aggregate data from the BRFSS are considered. High smoking prevalences were found in Alaska (45.1 percent), the Northern Plains (Montana, Nebraska, North
Dakota, and South Dakota) (44.2 percent), and the Northern Woodlands (Iowa, Michigan,
Minnesota, and Wisconsin) (35.6 percent), whereas much lower overall smoking prevalences were found in California (25.4 percent) and the Southwest (Arizona,
Colorado, New Mexico, and Utah) (17.0 percent) (Table 17) (CDC, public use data tapes,
1988–1992). The prevalence of current cigarette smoking varied by geographic region more than twofold for men and nearly threefold for women. For example, 21.3 percent of men and 13.5 percent of women in the Southwest reported that they currently smoked, compared with 49.1 percent of men and 38.4 percent of women in the Northern Plains
(Table 17).
30 The majority of American Indians and Alaska Natives (83.3 percent) responding to the
BRFSS smoked 15 or fewer cigarettes per day; this finding was consistent across all states and regions (Table 18) (CDC, public use data tapes, 1988–1992). Overall, female
American Indians and Alaska Natives smoked fewer cigarettes than their male counterparts—a finding that was consistent across all states and regions. American Indian smokers in the Northern Plains (13.5 percent) were the most likely to smoke 25 or more cigarettes per day. American Indian smokers in the Southwest (51.2 percent) and the
Pacific Northwest (46.8 percent) had the highest prevalence of cessation, whereas
American Indians in the Northern Plains (31.8 percent) and Alaska Natives (37.0 percent) had the lowest prevalence of cessation (Table 19) (CDC, public use data tapes, 1988–
1992).
31 In similar analyses of the BRFSS data aggregated for 1985–1988, the prevalence of smoking varied markedly by gender and geographic region (Sugarman et al. 1992). For
American Indian men, the prevalence of smoking was highest among those living in the
Plains region (Iowa, Minnesota, Montana, Nebraska, North Dakota, South Dakota, and
Wisconsin) (48.4 percent), followed by those in the West Coast region (California, Idaho, and Washington) (25.2 percent) and the Southwest (Arizona, New Mexico, and Utah)
(18.1 percent). Similarly, for American Indian women, the prevalence of smoking was highest among those living in the Plains region (57.3 percent), followed by those in the
West Coast region (31.6 percent) and the Southwest (14.7 percent).
Regional and tribal data on cigarette smoking are also available from a probability sample of American Indians living on or near the northern Montana Blackfeet
Reservation and those served by the Native American Center in Great Falls, Montana, in
1987 (Goldberg et al. 1991). Among Blackfeet Indians, 34 percent of men and 50 percent of women reported that they smoked cigarettes. Among American Indians in Great Falls,
63 percent of men and 62 percent of women reported that they smoked.
32 33 34 35 In both areas, rates of smoking were higher among persons aged 25 years and older than among their younger counterparts. For American Indians in Great Falls, those who had a high school education and did not go to college had lower rates of smoking than those with less than a high school education or those with some college education. Gender differences in smoking cessation were also observed. Among American Indians in Great
Falls, 16 percent of men and 19 percent of women had quit smoking; among the
Blackfeet American Indians, 34 percent of men and 22 percent of women had quit smoking (Goldberg et al. 1991).
36 In a 1990 study of members of the Oneida Indian Nation of New York, 71.6 percent of the men and 64.6 percent of the women reported having ever smoked cigarettes (CDC
1990). The prevalence of ever smoking cigarettes was lower among men (65.3 percent) and women (58.2 percent) with 12 or more years of education than among men (81.3 percent) and women (74.5 percent) with less than 12 years of education. Rates of current smoking among the Oneida Indian Nation followed similar patterns in terms of educational status: men (34.7 percent) and women (29.1 percent) with 12 or more years of education had a lower prevalence of cigarette smoking than men (59.4 percent) and women (56.9 percent) with less than 12 years of formal education. Overall, a greater proportion of men (44.4 percent) than women (40.0 percent) smoked. The prevalence of cessation, on the other hand, was fairly similar for men (37.9 percent) and women (38.1 percent).
Similar findings were observed in a survey of people on the Warm Springs Reservation
(Warm Springs Confederated Tribes 1993) and in the Western Washington Native
American Behavior Risk Factor Survey of the Chehalis, Hoh, Quinault, and Shoalwater
Tribes (Kimball et al. 1990). In a survey of 1,318 adult American Indian and Alaska
Native users of Indian clinics in northern California, 40 percent of the respondents reported smoking cigarettes (47 percent of the men and 37 percent of the women) (Hodge et al. 1995).
37
Aggregated data from the BRFSS indicate that among American Indian and Alaska
Native women of reproductive age, smoking rates were highest among women in Alaska
(43.9 percent), the Northern Plains (39.5 percent), and the Northern Woodlands (38.8 percent) and lowest among women in the Southwest (11.5 percent) and California (15.3 percent) (Table 20) (CDC, public use data tapes, 1988–1992).
Smokeless Tobacco Use
The use of smokeless tobacco (chewing tobacco and snuff) among American Indians and
Alaska Natives also has varied by state and region. According to the BRFSS data for
1988–1992, the prevalences among men were 24.6 percent in the Northern Plains, 16.8 percent in the Northern Woodlands, 14.3 percent in Oklahoma, 11.6 percent in Alaska,
6.5 percent in the Southwest, and 1.8 percent in the Pacific Northwest (CDC, public use data tapes, 1988–1992). In the Oneida Indian Nation survey, none of the women reported
38 using smokeless tobacco, whereas 17.3 percent of the men reported using it (CDC 1990).
The use of smokeless tobacco (chewing tobacco and snuff) among American Indians and
Alaska Natives also has varied by state and region.
More recently, investigators have reported extremely high rates of smokeless tobacco use among Lumbee women in North Carolina (CDC 1995). In 1991, the prevalence of smokeless tobacco use was greatest among Lumbee women 65 years of age and older (51 percent) and lowest among those 25–34 years of age (6 percent). The prevalence was also high among women with less than 12 years of education (42 percent).
The Center for Disease Control and the Surgeon General also detail many of the different health risks that Native Americans face that are associated with the use of tobacco products. The following information discusses how Native Americans are effected by
39 lung cancer, chronic obstructive pulmonary disease, coronary heart disease, and cerebrovascular disease as a result of tobacco.
Lung Cancer in American Indians and Alaska Natives
Since the early 1900s, many studies have documented the low overall occurrence of cancer among American Indians compared with whites (Hoffman 1928; Smith et al.
1956; Smith 1957; Salsbury et al. 1959; Sievers and Cohen 1961; Kravetz 1964;
Reichenbach 1967; Creagan and Fraumeni 1972; Dunham et al. 1973; Blot et al. 1975;
Lanier et al. 1976; Samet et al. 1980, 1988b; Sorem 1985; Mahoney and Michalek 1991;
Nutting et al. 1993). Investigations of lung cancer incidence and deaths have confirmed that lung cancer is less frequent among American Indians overall than among whites
(Coultas et al. 1994). Between 1992 and 1994, age-adjusted death rates for lung cancer per 100,000 among American Indian and Alaska Native men (33.5) and women (18.4) were slightly higher than those among Asian American and Pacific Islanders as well as
Hispanics, whereas they were lower than rates among African Americans and whites
(Table 2) (NCHS, public use data tapes, 1992–1994; U.S. Bureau of the Census 1997).
Mortality rates for malignant diseases of the respiratory system increased from 1980 through 1995 among American Indians and Alaska Natives (Table 1) (NCHS 1997).
Nationally, lung cancer is the leading cause of cancer death among American Indians and
Alaska Natives. Among those who died of cancer in 1993, the four leading causes of death were lung cancer (26.8 percent), cancer of the colon and rectum (8.9 percent), cancer of the female breast (6.3 percent), and prostate cancer (6.0 percent) (Parker et al.
40 1997). Additionally, lung cancer was the leading cause of cancer death among both men and women in 10 of the 12 Indian
Health Service (IHS) areas (Arizona and New Mexico had low rates of lung cancer deaths) (Valway 1992). Lung cancer death rates among American Indians and Alaska
Natives have been rising in most IHS areas (Figures 2 and 3) (Valway 1992); national death rates from malignant diseases of the respiratory system have also been increasing
(Table 1).
Lung cancer death rates vary by IHS area. Specifically, American Indians in the
Southwest have had the lowest lung cancer death rates, whereas American Indians in
Alaska, North Dakota, South Dakota, and Montana have had rates nearly as high as those
41 in the general U.S. population (Table 3, Figures 2 and 3) (Valway 1992). These differences are associated with variations in smoking among American Indians and
Alaska Natives (Centers for Disease Control [CDC] 1987; Welty et al. 1993). In an analysis of data from the 1985–1988 Behavioral Risk Factor Surveillance System
(BRFSS) on 1,055 American Indians, Sugarman and colleagues (1992) determined smoking prevalence for three groups of states that contained three specific HIS areas. In this study, the Plains states (Iowa, Minnesota, Montana, Nebraska, North Dakota, South
Dakota, and Wisconsin) contained the Aberdeen, Bemidji, and Billings IHS areas; the
West Coast states (California, Idaho, and Washington) contained the Portland and
California IHS areas; and the Southwest states (Arizona, New Mexico, and Utah) contained the Albuquerque, Navajo, Tucson, and Phoenix IHS areas. Cigarette smoking prevalence rates were highest in the Plains states (48.4 percent for men and 57.3 percent for women), intermediate in the West Coast states (25.2 percent for men and 31.6 percent for women), and lowest in the Southwestern states (18.1 percent for men and 14.7 percent for women). These general geographic patterns of smoking prevalence paralleled patterns of lung cancer mortality (Table 3) (Valway 1992). The smoking prevalence estimates from the 1985–1988 BRFSS analyses may be imprecise because of relatively small samples. However, other analyses (American Indians and Alaska Natives, in Chapter 2;
Welty et al. 1995) show similar patterns.
42 Another potential limitation is that American Indians living in the California and
Portland IHS areas may be more likely than American Indians from other IHS areas to be misclassified on death certificates as being of other racial/ethnic categories (Valway
1992), suggesting that death rates for American Indians may be underestimated in these areas (Sorlie et al. 1992).
Lanier and colleagues (1996) recently reported on lung cancer incidence rates for Alaska
Native men and women. Lung cancer incidence was higher for Alaska Natives than it was for the general U.S. population. In addition, lung cancer was the most common incident cancer among men and the third most common incident cancer among women (after breast cancer and cancer of the colon/rectum). Lung cancer incidence increased
43 substantially among Alaska Native men (by 93 percent) and women (by 241 percent) between 1969–1973 and 1989–1993. The authors concluded, “Reduction in tobacco use would result in the greatest decreases in cancer rates in this population” (p. 751).
Chronic Obstructive Pulmonary Disease
In addition to causing lung cancer, tobacco smoking also causes several non-malignant diseases of the lung and increases the frequency of respiratory symptoms and illnesses
(USDHHS 1989b, 1990). Chronic obstructive pulmonary disease (COPD) is a clinical term applied to persons with a permanent airflow obstruction associated with significant impairment (Samet 1989; USDHHS 1989b). Cigarette smokers with COPD have impaired breathing as a result of emphysema (air space enlargement and destruction) and damage to the airways (USDHHS 1984). These smokers also may have chronic bronchitis, which is the term used by epidemiologists and clinicians for chronic sputum production.
Longitudinal studies show that the development of COPD follows sustained excessive loss of ventilatory function of the lung caused by cigarette smoking (USDHHS 1984,
1990). The rate at which ventilatory function declines tends to increase with the amount smoked and to revert to the rate associated with aging after smoking cessation (USDHHS
1990). The frequency of chronic bronchitis is similarly related to smoking pattern.
44 Little information is available on the occurrence of COPD among American Indians and
Alaska Natives. In a 1987 survey of approximately 6,500 American Indians and Alaska
Natives aged 19 years and older, 2.4 percent of men and 1.4 percent of women reported having emphysema, compared with 2.7 percent of men and 2.3 percent of women in the general U.S. population (Johnson and Taylor 1991). Rhoades (1990) studied hospitalization and death rates for COPD in American Indians and Alaska Natives.
Although the death rates for COPD were lower than from other competing causes, such as chronic liver disease, diabetes, and injuries, the hospitalization rates for COPD exceeded those for cancer and tuberculosis. Additionally, hospitalization rates and death rates for COPD varied widely between geographic regions. The contribution of COPD to hospitalization rates ranged from 1.6 percent in the Navajo IHS area to 5.1 percent in the
Bemidji area; COPD death rates per 100,000 ranged from 1.7 in the Albuquerque area to
10.3 in the Billings area (Rhoades 1990).
Between 1992 and 1994, COPD death rates among American Indian men were approximately two-thirds the rates among whites (Table 2). Data from the Alaska area indicate that from 1979 through 1986, COPD death rates per 100,000 were 31.6 for
Alaska Native men, compared with 40.3 for white men in Alaska and 38.3 for men in the
United States as a whole (Coultas et al. 1994). The COPD death rates per 100,000 were
22.3 for Alaska Native women, compared with 34.8 for white women in Alaska and 18.6 for women in the United States as a whole. Similarly, death rates for COPD in New
Mexico (Samet et al. 1988b) reflect the nationwide pattern of lower rates of death among
45 American Indians compared with whites and are consistent with the lower smoking prevalence among tribes in the southwestern United States (Sugarman et al. 1992). The high rates of COPD among Alaska Natives are probably related to the fact that rates of smoking among Alaska Natives are higher than rates among American Indians elsewhere, particularly in the Southwest.
Coronary Heart Disease
In 1994, cardiovascular diseases, comprising a diverse group of disorders including coronary heart disease (CHD), hypertension, stroke, and rheumatic heart disease, caused approximately 940,000 deaths in the United States (NCHS 1996a). The occurrence of specific cardiovascular diseases and their risk factors varies widely among the different racial/ethnic minority groups. Of the cardiovascular diseases, CHD is the single largest cause of death; it results in approximately 480,000 deaths annually in the United States.
This section of the report focuses on CHD, which is also termed coronary artery disease or ischemic heart disease (IHD).
Coronary artery disease results from atherosclerosis of coronary arteries. Anatomical lesions become evident in young adults and are usually clinically manifest in the fifth through seventh decades as angina pectoris, myocardial infarction, and sudden cardiac death (Enos et al. 1986; Strong 1986). In this chapter, these clinical manifestations of coronary artery disease are collectively termed CHD.
46 Numerous non-modifiable and modifiable risk factors contribute to the development of
CHD. The non-modifiable factors include aging, gender (men have greater risk), and family history of CHD. The major risk factors that are potentially modifiable include hypertension, cigarette smoking, obesity, hypercholesterolemia, diabetes mellitus, and physicalinactivity (Smith and Pratt 1993). The 1983 Surgeon General’s report on smoking and health concluded that “Cigarette smoking should be considered the most important of the known modifiable risk factors for coronary heart disease in the United
States” (USDHHS 1983, p. iv).
Most of the available data on CHD among American Indians and Alaska Natives have originated from studies of selected tribes, as reviewed by Young (1994). Investigations of heart disease in southwestern American Indians and Alaska Natives conducted several decades ago showed a low prevalence of CHD relative to the U.S. population and other racial/ethnic groups (Welty and Coulehan 1993). In a descriptive study of CHD deaths occurring from 1948 through 1952 among the Navajos, Smith (1957) found that the standardized death rate ratios for CHD among the Navajos compared with whites were
0.10 for men and 0.12 for women. Since then, numerous other regional investigations of
CHD deaths and the incidence of CHD in other tribes of the United States and Canada have been reported. Overall, for studies conducted in the 1950s and 1960s, the ratios of
CHD death rates among American Indians and Alaska Natives compared with nationwide rates have ranged from 0.1 to 0.5. An analysis of death statistics from the NCHS showed that crude CHD death rates for individuals classified as American Indians, Eskimos, or
47 Aleuts declined from 100 per 100,000 in 1969–1971 to 67 per 100,000 for the years
1979–1981 (Gillum 1988). A review of New Mexico’s vital statistics for 1958–1982 indicates that for American Indian men, CHD death rates peaked at 101.7 per 100,000 between 1968 and 1972 and fell to 76.6 per 100,000 between 1978 and 1982 (Becker et al. 1988). For American Indian women, the CHD death rate peaked at 63.0 per 100,000 between 1963 and 1967 and declined to a low of 28.3 per 100,000 between 1978 and
1982.
In a recent analysis of mortality data for 1992– 1994 (Table 2), the rate of death due to
CHD was lower among American Indian and Alaska Native men (100.4) and women
(45.9) than among white men (132.5) and women (62.9). The ratio of CHD death rates among American Indians and Alaska Natives compared with whites was .76 for men and .
73 for women. The fact that these ratios are higher than ratios from earlier studies suggests that CHD deaths among American Indians and Alaska Natives may be increasing (Welty and Coulehan 1993; Young 1994).
Risk factors for cardiovascular disease were investigated recently in a large multi-tribal study of American Indians. The results showed that mean levels of total, low density lipoprotein, and high density lipoprotein cholesterol were lower in American Indians than in the U.S. general population. Prevalence of hypertension, non-insulin dependent diabetes mellitus, and obesity were very high, but varied considerably among tribes and geographic regions (Welty et al. 1995). A second study found that levels of serum
48 cholesterol were lower in American Indian smokers who attended a stop smoking clinic than in African American and white smokers from population-based samples (Folsom et al. 1993). However, fibrinogen levels and the prevalence of abdominal obesity were higher in American Indian smokers than in African Americans and whites.
The IHS is another source of nationwide and regional health statistics on CHD deaths.
Because the mortality data in IHS reports combine all cardiovascular diseases under
“diseases of the heart” (IHS 1994b), this information cannot be compared directly with
CHD data from other sources. Between 1989 and 1991, diseases of the heart accounted for 21.9 percent of deaths in all IHS areas, with a crude death rate of 115.1 per 100,000
(IHS 1994b). These data indicate cardiovascular diseases were the leading cause of death among American Indians. However, because Indian race/ethnicity was underreported on death certificates in several IHS areas, including California and Oklahoma as well as
Portland, Oregon, this death rate may be incorrect.
Death rates from heart diseases vary widely among people in the 12 IHS areas. From
1989 through 1991, the rate of death from heart diseases per 100,000 was lowest in the
Albuquerque area (88.0) and highest highest in the Aberdeen area (249.0) (IHS 1994a).
These wide variations in deaths from diseases of the heart parallel the wide variations in the prevalence of cigarette smoking among the various tribes (Sugarman et al. 1992;
Coultas et al. 1994) (see also Chapter 2). For example, in a 1985–1988 survey of adult
American Indians in the southwestern United States, 18.1 percent of men and 14.7
49 percent of women reported current smoking, compared with 48.4 percent of men and 57.3 percent of women in the Plains states (Sugarman et al. 1992).
Data to assess the influence of tobacco use on the risk of cardiovascular disease among
American Indians are extremely limited. One study has shown that cigarette smoking increases the risk for CHD among American Indians, after adjustment for other risk factors (Howard et al. 1995). In fact, most studies presented in this section describe cardiovascular disease morbidity and mortality without ever assessing the influence of tobacco use. Nevertheless, cardiovascular disease is the leading cause of death among
American Indians and Alaska Natives (NCHS 1996b), and tobacco use is an important risk factor for this disease. More studies are needed to evaluate the independent effect of tobacco use on the risk of cardiovascular disease among American Indians and Alaska
Natives.
Cerebrovascular Disease
Cerebrovascular disease is a major cause of mortality and morbidity in the United States every year. In 1994, a total of 153,306 deaths in the United States were caused by cerebrovascular disease (NCHS 1996a).
Stroke, the major form of cerebrovascular disease, results from an interruption of the arterial blood supply to the central nervous system, primarily the brain. Most commonly, the interruption of the arterial blood supply results from an occlusion of an artery in the
50 brain by a thrombus, which may have resulted from atherosclerosis or blood clots from a diseased heart. A less common mechanism for development of stroke is rupture of a blood vessel in the brain. Other diagnoses under the general rubric of cerebrovascular disease include transient cerebral ischemia and cerebral arteriosclerosis.
As for CHD, risk factors for stroke may be divided into non-modifiable and modifiable characteristics. The non-modifiable factors include aging, gender, and family history of stroke. The major risk factors that are potentially modifiable include hypertension, hypercholesterolemia, diabetes mellitus, cigarette smoking, and heart disease (USDHHS
1989b).
In recent years, age-adjusted death rates for cerebrovascular disease were slightly lower among American Indian and Alaska Native men and women than among white men and women (Table 2). For example, from 1992–1994, the age-adjusted death rate per 100,000 population for cerebrovascular disease was 23.9 for American Indian and Alaska Native men, 26.3 for white men, 21.1 for American Indian and Alaska Native women, and 22.6 for white women.
Young’s (1994) recent review of the literature indicates that few investigations have focused on cerebrovascular disease among American Indians or Alaska Natives.
Middaugh (1990) found little difference between the death rate from cerebrovascular disease among Alaska Natives and persons of other race/ ethnicities, with death rate ratios of 1.13 for men and 1.03 for women. In a review of 1958–1987 vital statistics data from
51 New Mexico, Kattapong and Becker (1993) observed lower rates of death from cerebrovascular disease among American Indians than among Hispanics and whites. For
American Indian men, cerebrovascular disease death rates per 100,000 peaked at 70.1 between 1968 and 1972 and fell to 31.3 between 1983 and 1987. Cerebrovascular disease death rates for American Indian women also peaked at 55.7 between 1968 and 1972 and declined to a low of 19.3 between 1983 and 1987.
Mental Health
The following is a report from the Surgeon General and the National Center for
Biotechnological Information (NCSI) on the mental health of Native Americans:
Introduction
American Indians and Alaska Natives (Indians, Eskimos, and Aleuts) were self-governing people who thrived in North America long before Western Europeans came to the continent and Russians to the land that is now Alaska. American Indians and Alaska
Natives occupy a special place in the history of our Nation; their very existence stands as a testament to the resilience of their collective and individual spirit. This chapter first reviews history and the current social con-texts in which American Indians and Alaska
52 Natives live and then presents what is known about their mental health needs and the extent to which those needs are met by the mental health care system.
The U.S. Census Bureau estimates that 4.1 million American Indians and Alaska Natives lived in the United States in 2000¹. This represented less than 1.5 percent of the total U.S. population (U.S. Census Bureau, 2001). However, between 1960 and 2000, the recorded population of this minority group increased by over 250 percent, largely due to better data collection by the Census Bureau, an increasing number of individuals who identify themselves as American Indians or Alaska Natives, and an increase in the birth rate of this population. Alaska Natives comprise approximately 4 percent of the combined population of American Indians and Alaska Natives (Population Reference Bureau,
2000). But numbers alone tell little of this population, for it is the social and political history of Native people² and their relation-ship to the U.S. Government that define their distinctive place in American life.
¹This figure includes people identifying themselves as Hispanic and/or multiracial members of this group. Those identifying solely as American Indian or Alaska Native comprise just less than 1 percent of the U.S. population.
²In 1977, the National Congress of American Indians and the National Tribal Chairmen's Association issued a joint resolution indicating that in the absence of specific tribal designations, the preferred reference to people indigenous to North America is American Indian and/or Alaska Native. A variety of other referents are apparent in the professional literature, including Native Americans, First Americans, and Natives. In keeping with the 1977 resolution, this report adopts American Indian and/or Alaska Native except in limited instances where, editorially, Native people or Native American is used as a general term to refer to both American Indians and Alaska Natives.
Historical Context
American Indians
53 As members of federally recognized sovereign nations that exist within another country,
American Indians are unique among minority groups in the United States. Ever since the
European “discovery” and colonization of North America, the history of American
Indians has been tied intimately to the influence of European settlers and to the policies of the U.S. Government.
Early European contact in the 17th century exposed Native people to infectious diseases from which their natural immunity could not protect them, and the population of
American Indians plummeted. In 1820, as European settlers pushed westward, Congress passed the Indian Removal Act to force Native Americans west of the Mississippi River.
Brutal marches of Native people, sometimes in the dead of winter, ensued. Later, as colonists moved farther westward to the Great Plains and beyond, the U.S. Government sent many tribes to live on reservations of marginal land where they had little chance of prospering. Treaties between the tribes and the U.S. Government were signed, then broken, and struggles for territory followed. The Plains Indian Wars raged until the end of the 19th century, punctuated by whole-sale slaughter of American Indian men, women, and children. As the settlers migrated toward the Pacific Ocean, the U.S. Congress passed legislation that effectively made Native Americans wards of the state.
Even as American Indians were being killed or forced onto reservations, some Americans protested the destruction of entire Indian “nations” (tribes and tribal confederacies). In
1887, after the bloodiest of the Indian Wars ended, Congress passed the Dawes Severalty
54 Act, which allotted portions of reservation land to Indian families and individuals. The government then sold the leftover reservation land at bargain prices. This Act, which intended to integrate American Indians into the rest of U.S. society, had disastrous consequences. In addition to losing surplus tribal lands, many Natives lost their allotted lands as well and had little left for survival. By the early 1900s, the population of
American Indians reached its lowest point, an incredible 5 percent of the original population estimated at first European contact (Thornton, 1987).
The Federal Indian Boarding School Movement began in earnest in 1875. By 1899, there were 26 off-reservation schools scattered across 15 states. The emphasis within the Indian educational system later shifted to reservation schools and public schools, but boarding schools continued to have a major impact into the next century because they were perceived as “civilizing” influences on American Indians. During the 1930s and 1940s, nearly half of all Indian people who received formal education attended such schools.
American Indians experienced both setbacks and progress during the 20th century. In
June 1924, Congress granted American Indians U.S. citizenship. The Indian Citizenship
Act later was amended to include Alaska Natives (Deloria, 1985; Thornton, 1987). The subsequent passage of the Indian Reorganization Act (1934) placed great emphasis on civilizing Native people and teaching them Christianity. To this end, many more Native
American children were sent to learn “American ways” at government- or church-run
55 boarding schools that were often thousands of miles from the “detrimental influences” of their home reservations.
The era of American Indian educational reform began in the 1920s. Public criticism of
Indian Bureau policies and practices culminated in an in-depth investigation of Indian affairs by the Brookings Institution in 1926. Its report, The Problem of Indian
Administration, concluded:
The first and foremost need in Indian education is a change in point of view.
Whatever may have been the official government attitude, education for the Indian in the past has proceeded on the theory that it is necessary to remove the Indian child as far as possible from his home environment; whereas the modern point of view in education and social work lays stress on upbringing in the natural setting of home and family life. Although some children did well in these settings, other did not.
Reports of harsh discipline were widespread (Brookings, 1971).
Even worse, the National Resource Center on Child Sexual Abuse (1990) cites evidence that many Native American children were sexually abused while attending boarding schools (Horejsi et al., 1992).
One positive result of the collective experience of boarding school students is that it gave rise to a shared social consciousness across previously disparate tribes, thereby fueling political change. One lesson from the boarding school era is that tribal peoples have
56 encountered tremendous adversity yet survived—politically, culturally, linguistically, and spiritually (Hamley, 1994).
Near the end of World War II, Congress began to withdraw Federal support and to abdicate responsibility for American Indian affairs. Whereas earlier assimilationists had envisioned a time when tribes and reservations would vanish as Native Americans became integrated into U.S. society, the proponents of “termination” decided to legislate such entities out of existence. As a consequence, over the following two decades, many
Federal services were withdrawn, and Federal trust protection was removed from tribal lands.
One policy from this era was an attempt by the U.S. Government to extinguish Native spiritual practices. A government prohibition on participation in traditional spiritual ceremonies continued until the American Indian Religious Freedom Act of (1978).
Despite the prohibitions and the Christianizing efforts by various churches, indigenous culture and spirituality have survived and are widely practiced (Bryde, 1971). Even in areas where many Native people practice Christianity, traditional cultural views still heavily influence the way in which Native people understand life, health, illness, and healing (Todd-Bazemore, 1999).
In the 1970s, American Indians and Alaska Natives began to demand greater authority over their own lives and communities, encouraged by the 1969 publication of the report
57 of the Congressional Committee on Labor and Public Welfare: Indian Education: A
National Tragedy— A National Challenge. Current Federal policy encourages tribal administration of the government’s health, education, welfare, law enforcement, and housing pro-grams for Native Americans. Local communities have responded to this in a variety of ways that reflect the continuing diversity of their experiences and perspectives.
Alaska Natives
The history of Alaska Natives is similar to the history of their American Indian cousins to the south, yet differs in some important ways. Similar to American Indians, Alaska
Natives are culturally diverse. Inupiats settled the Arctic coasts from the Chukchi Sea as far east as Greenland. In interior Alaska, along the Yukon and Tanana rivers, live
Athabascan Indians; their link to the Navajo and Apache of Arizona and New Mexico is evident in the similarity of their languages. In southeast Alaska, Tlingit, Haida,
Tsimshian, and Eyak Indians live by the sea; their arts and crafts have been well known for over 200 years. The coast of northeast Alaska and the deltas of the Yukon and
Kuskokwim rivers are home to some 20,000 Yup’ik and Cup’ik Eskimos, the greatest concentration of Eskimos in the world. They still depend on hunting, fishing, and gathering. On the Pribilof Islands and the Aleutian chain, the Aleuts, kin to the Yup’ik, maintain their cultural identity even though decimated by a century and a half of Russian occupation (Berger, 1985). The Aleuts share with American Indians a history of devastation as a result of diseases introduced by white men. Their peak population, estimated at 80,000 just prior to European contact, dwindled to 25,000 by 1909. The early
58 Russian invaders took control of the native Aleut and Inuit people and forced them to hunt for furs. In 1867, the United States bought Alaska from Russia, and the Treaty of
Cession stated that the “uncivilized [Native] tribes will be subject to such laws and regulations as the United States may, from time to time, adopt in regard to aboriginal tribes of that country” (Treaty of Cession, Article III). Although the U.S. Government had legal control over Alaskan land from that point on, Alaska Natives were not forced to move to reservations. In fact, the Federal Government did not create reservations in
Alaska until 1891, and, even then, it established only a few for a small percentage of the
Alaska Native population.
In 1971, upon the discovery of huge oil deposits on Alaska’s North Slope and the wish to clear the area for construction of the Alaska Pipeline, Congress passed the Alaska Native
Claims Settlement Act (ANCSA). This Act organized Alaska Natives into regional and village corporations and gave them control over more than 44 million acres of land and almost $1 billion. In exchange, Alaska Natives waived all claims to many of their original lands.
In the 1970s, more and more Alaska Natives petitioned for the right to self-government, and traditional institutions such as tribal courts and councils re-emerged. The U.S. Census
Bureau now recognizes 200 Native communities in Alaska; more than half have state- chartered municipal governments, and 69 have elected Native Councils (Douglas K.
59 Mertz, personal communication). The sheer number of these governments and councils reflects a rich and diverse Alaskan heritage (Berger, 1985).
Current Status
Geographic Distribution
Most American Indians live in Western States, including California, Arizona, New
Mexico, South Dakota, Alaska, and Montana, with 42 percent residing in rural areas, compared to 23 percent of whites (Rural Policy Research Institute, 1999). The number of
American Indians who live on reservations and trust lands (areas with boundaries established by treaty, statute, and executive or court order) has decreased substantially in the past few decades. For example, in 1980, most American Indians lived on reservations or trust lands; today, only 1 in 5 American Indians live in these areas, and more than half live in urban, suburban, or rural nonreservation areas.
Family Structure
Consistent with a national trend, the proportion of American Indian families maintained by a single female increased between 1980 and 1990. However, the Native American increase of 27 percent was considerably larger than the national figure of 17 percent. In
1990, 6 in 10 American Indian and Alaska Native families were headed by married couples; in contrast, about 8 in 10 of the Nation’s other families were headed by married couples (U.S. Census Bureau, 1993). In 1993, American Indian families were slightly larger than the average size of all U.S. families (3.6 versus 3.2 persons per family) (U.S.
60 Census Bureau, 1993). An even more telling insight into the family structure of American
Indians follows from consideration of the dependency index, which compares the proportion of household members between the ages of 16 and 64 to those younger than
16 years of age combined with those 65 years of age and older. Here the assumption is that the former are more likely to con-tribute economically to a household, and the latter are not, thus the dependency of one on the other. In this regard, households in many
American Indian communities exhibit much higher dependency indices than other segments of the U.S. population and are more comparable to impoverished Third World countries (Manson & Callaway, 1988).
Education
In 1990, 66 percent of American Indians and Alaska Natives 25 years old and over had graduated from high school or achieved a higher level of education; in contrast, only 56 percent had done so in 1980. Despite this advance, the figure was still below that for the
U.S. population in general (75%). American Indians and Alaska Natives were not as likely as others in the United States to have completed a bachelor’s degree or higher (U.S.
Census Bureau, 1993). Data suggest that Indian students achieve on a par with or beyond the performance of non-Indian students in elementary school and show a crossover or decline in performance between fourth and seventh grades (Barlow & Walkup, 1998).
Explanations for this crossover vary. Indian children may have a culturally rooted way of learning at odds with teaching methods currently used in public education. Several researchers cite differences between Indian cognitive styles and Western teaching styles.
61 For example, Indian children are primarily visual learners, rather than auditory or verbal learners. Indian youngsters tend to excel at nonverbal performance scales of development and fall below national averages on verbal scales (Yates, 1987). Verbal learners are favored by modes of mainstream public education and testing (Yates, 1987). Linguistic experts have observed that Native languages stress keen descriptive observation and form rather than the verbal or conceptual abstractions that are common in English, which may make learning in English-language schools difficult (Basso, 1996).
Regardless of the reasons for lower academic achievement, negative consequences often ensue. The academic crossover is paralleled by a similar trend in mental health status, as extrapolated from rates of child and adolescent outpatient treatment. Specifically, one study noted that Indian youth enter mental health treatment at a sharply increased rate during the same period, fourth to seventh grades, and that the rate dramatically exceeds their non-Indian counterparts, with a continuously widening gap into late adolescence
(Beiser & Attneave, 1982). Subsequent work by Beiser and colleagues clearly underscores the contribution of cultural dynamics in the classroom to these outcomes
(Beiser et al., 1998).
Income
62 Following the devastation of these once-thriving Indian nations, the social environments of Native people have remained plagued by economic disadvantage. Many American
Indians and Alaska Natives are unemployed or hold low-paying jobs. Both men and women in this population were roughly twice as likely as whites to be unemployed in
1998 (Population Reference Bureau, 2000). From 1997 to 1999, about 26 percent of
American Indians and Alaska Natives lived in poverty; this percentage compares with 13 percent for the United States as a whole and 8 percent for white Americans (U.S. Census
Bureau, 1999b).
Physical Health Status
With some exceptions, the health of this ethnic minority group has begun to improve, and the gap in life expectancy rates between Native Americans and others has begun to close.
For instance, the infant mortality rate of American Indians decreased from 22 per 1,000 live births in 1972–1974 to 13 in 1990 and 9 in 1997 (Indian Health Service, 1997). Still,
American Indians and Alaska Natives have the second highest infant mortality rate in the
Nation (National Center for Health Statistics, 1999) and the highest rate of sudden infant death syndrome (DHHS, 1998). The death rates among American Indians ages 15 to 24 are also higher than those for white persons in the same age group (Grant Makers in
Health, 1998). American Indians and Alaska Natives are five times more likely to die of alcohol-related causes than are whites, but they are less likely to die from cancer and heart disease (Indian Health Service, 1997). The rate of diabetes for this population group is more than twice that for whites. In particular, the Pima tribe of Arizona has one of the
63 highest rates of diabetes in the world. The incidence of end-stage renal disease, a known complication of diabetes, is higher among American Indians and Alaska Natives than for both whites and African Americans.
Nationally, one-third of American Indians and Alaska Natives do not have a usual source of health care, that is, a doctor or clinic that can provide regular preventive and medical care (Brown et al., 2000). In 1955, the U.S. Government established the Indian Health
Service (IHS) within the Department of Health and Human Services (DHHS). The IHS mission is to provide a comprehensive health service delivery system for American
Indians and Alaska Natives “… with opportunity for maximum Tribal involvement in developing and managing programs to meet their health needs” (IHS, 1996). The IHS is responsible for working to provide health delivery programs run by people who are cognizant of entitlements of Native people to all Federal, State, and local health programs, in addition to IHS and tribal services. The IHS also acts “as the principal
Federal health advocate for the American Indian and Alaska Native people in the building of health coalitions, networks, and partnerships with Tribal nations and other government agencies as well as with non-Federal organizations [such as] academic medical centers and private foundations” (IHS, 1996).
Although the goal of the IHS is to provide health care for Native Americans, IHS clinics and hospitals are located mainly on reservations, giving only 20 percent of American
Indians access to this care (Brown et al., 2000). Furthermore, IHS-eligible American
64 Indians are less likely than others with private health insurance coverage to have obtained
the minimum number of physician visits3 for their age and health status.
More than half of American Indians and Alaska Natives live in urban areas (U.S. Census
Bureau, 1990). Title V of Public Law 94–437 of the Indian Health Care Improvement Act authorizes the appropriation of funds for urban Indian health programs. Presently, there are 34 such programs across 41 sites, independently operated through grants and contracts offered by the IHS. Though there is little data available regarding the health needs and access to care among urban Native Americans, the constellation of problems is similar to that of rural communities and includes serious mental illness, alcohol and substance abuse, alcohol and substance dependence, and suicidal ideation (Novins, 1999).
An Urban Indian Epidemiology Center was recently funded by the IHS to address this important knowledge gap (Indian Health Service, 2001).
Even where the IHS is active, health service systems in general fail to meet the wide- ranging needs of indigenous populations, especially in remote and isolated regions of the
United States. This includes rural, “bush” Alaska, which is divided into 12 Native regions that encompass several villages whose languages, dialects, and cultural connections are only somewhat similar (Reimer, 1999). For example, ethnographic studies in two Pacific
Northwest Indian tribal communities document the lack of trust between American
Indians and the IHS. Many community members felt they were not receiving appropriate care. Furthermore, holistic education programs to address health needs across the lifespan
65 were considered lacking. Overall, many community members reported that they felt unheard and trapped in a system of care over which they have no control (Strickland,
1999).
Today, the IHS remains the primary entity responsible for the mental health care of
American Indians and Alaska Natives. Until 1965, the delivery of mental health services was sporadic. That year, the first Office of Mental Health was opened on the Navajo
Reservation. It remained severely understaffed and underfunded until its dissolution in
1977. Legislation to authorize comprehensive mental health services for tribes has been enacted and amended several times, but Congress consistently failed to appropriate funds for such initiatives (Nelson & Manson, 2000). Financial inadequacies have resulted in four IHS service areas without child or adolescent mental health professionals.
Fragmented Federal, State, trib-
3Minimum number of visits set by the Kaiser Commission are at least one physician visit in the past year for children ages 0-5 and in the past two years for children ages 6-17 (as recommended by the American Academy of Pediatrics in Pediatrics, 96, 712), and in the past year for adults in fair or poor health and in the past two years for adults in good or excellent health (Kaiser Commission on Medicaid and the Uninsured, 2000). al, private foundation, and national nonprofit attempts to meet such obvious needs have led to isolation, difficult work conditions, cultural differences, and high turnover rates that dilute efforts to provide mental health services (Barlow & Walkup 1998; Novins, Fleming, et al., 2000).
The Need for Mental Health Care
Historical and Sociocultural Factors That Relate to Mental Health
The history of American Indians and Alaska Natives sets the stage for understanding their mental health needs. Past governmental policies regarding this population have led to mistrust of many government services or care provided by white practitioners. Attempts
66 to eradicate Native culture, including the forced separation of Indian and Native children from parents in order to send them to boarding schools, have been associated with negative mental health consequences (Kleinfeld, 1973; Kleinfeld & Bloom, 1977). Some argue that, as a consequence of past separation from their families, when these children become parents themselves, they are not able to draw on experiences of growing up in a family to guide their own parenting (Special Subcommittee on Indian Education, 1969).
The effect of boarding school education on American Indian students remains controversial (Kunitz et al., 1999; Irwin & Roll, 1995).
The socioeconomic consequences of these historical policies are also telling. The removal of American Indians from their lands, as well as other policies summarized above, has resulted in the high rates of poverty that characterize this ethnic minority group. One of the most robust scientific findings has been the association of lower socioeconomic status with poor general health and mental health. Widespread recognition that many Native people live in stressful environments with potentially negative mental health consequences has led to increasing study and empirical documentation of this link
(Manson, 1996b, 1997; Beals et al, under review; Jones et al., 1997).
Key Issues for Understanding the Research
Because American Indians and Alaska Natives comprise such a small percentage of U.S. citizens in general, nationally representative studies do not generate sufficiently large samples of this special population to draw accurate conclusions regarding their need for
67 mental health care. Even when large samples are acquired, find ings are constrained by the marked heterogeneity that characterizes the social and cultural ecologies of Native people. There are 561 federally recognized tribes, with over 200 indigenous languages spoken (Fleming, 1992). Differences between some of these languages are as distinct as those between English and Chinese (Chafe, 1962). Similar differences abound among
Native customs, family structures, religions, and social relation-ships. The magnitude of this diversity among Indian people has important implications for research observations.
Novins and colleagues provide an excellent illustration of this point in a paper that shows that the dynamics underlying suicidal ideation among Indian youth vary significantly with the cultural contexts of the tribes of which they are members (Novins, et al., 1999).
A tension arises, then, between the frequently conflicting objectives of comparability and cultural specificity—a tension not easily resolved in research pursued among this special population.
As widely noted, language is important when assessing the mental health needs of individuals and the communities in which they reside. Approximately 280,000 American
Indians and Alaska Natives speak a language other than English at home; more than half of Alaska Natives who are Eskimos speak either Inuit or Yup’ik. Consequently, evaluations of need for mental health care often have to be conducted in a language other than English. Yet the challenge can be more subtle than that implied by stark differences in language. Cultural differences in the expression and reporting of distress are well established among American Indians and Alaska Natives. These often compromise the
68 ability of assessment tools to capture the key signs and symptoms of mental illness
(Kinzie & Manson, 1987; Manson, 1994, 1996a). Words such as “depressed” and
“anxious” are absent from some American Indian and Alaska Native languages (Manson et al., 1985). Other research has demonstrated that certain DSM diagnoses, such as major depressive disorder, do not correspond directly to the categories of illness recognized by some American Indians. Thus, evaluating the need for mental health care among
American Indians and Alaska Natives requires careful clinical inquiry that attends closely to culture.
Census 2000 reports a significant increase in the number of individuals who identify, at least in part, as American Indian or Alaska Native. This finding resurrects longstanding debates about definition and identification (Passel, 1996). The relationship of those who have recently asserted their Indian ancestry to other, tribally defined individuals is unknown and poses a difficult challenge. It suggests a newly emergent need to consider the mental health status and requirements of individuals who live primarily within mainstream society, while continuing to build the body of knowledge on groups already defined.
Mental Disorders
Although not all mental disorders are disabling, these disorders always manifest some level of psychological discomfort and associated impairment. Such symptoms often improve with treatment. Therefore, the presence of a mental disorder is one reasonable
69 indicator of need for mental health care. As noted in previous chapters, in the United
States such disorders are identified according to the Diagnostic and Statistical Manual of
Mental Disorders (DSM) diagnostic categories established by the American Psychiatric
Association (1994).
Adults
Unfortunately, no large-scale studies of the rates of mental disorders among American
Indian and Alaska Native adults have yet been published. The discussion at this point must rely on smaller, suggestive studies that await future confirmation.
The most recently published information regarding the mental health needs of adult
American Indians living in the community comes from a study conducted in 1988
(Kinzie et al., 1992). The 131 respondents were inhabitants of a small Northwest Coast village who had participated in a previous community-based epidemiological study
(Shore et al., 1973). They were followed up 20 years later using a well accepted method for diagnosing mental disorders, the Schedule for Affective Disorders and Schizophrenia-
Lifetime Version. Nearly 70 percent of the sample had experienced a mental disorder in their lifetimes. About 30 percent were experiencing a disorder at the time of the follow- up.
The American Indian Vietnam Veterans Project (AIVVP) is the most recent community- based, diagnostically oriented psychiatric epidemiological study among American Indian
70 adults to be reported within the last 25 years (Beals et al., under review; Gurley et al.,
2001; National Center for Post-Traumatic Stress Disorder and the National Center for
American Indian and Alaska Native Mental Health Research [NCPTSD/NCAIANMHR],
1996). It was part of a congressionally mandated effort to replicate the National Vietnam
Veterans Readjustment Study that had been conducted in other ethnic groups (Kulka et al., 1990).
The AIVVP found that rates of PTSD among the Northern Plains and Southwestern
Vietnam veterans, respectively, were 31 percent and 27 percent, current; 57 percent and
45 percent, lifetime. These figures were significantly higher than the rates for their white, black, and Japanese American counterparts. Likewise, current and lifetime prevalence of alcohol abuse and/or dependence among the Indian veterans (more than 70% current; more than 80% lifetime) was far greater than that observed for the others, which ranged from 11 to 32 percent current and 33 to 50 percent lifetime (NCPTSD/NCAIANMHR,
1997).
There are no recent, scientifically rigorous studies that could shed light on the need for mental health care among Alaska Natives. The only systematic studies of Alaska Natives are outdated (Murphy & Hughes, 1965; Foulks & Katz, 1973; Sampath, 1974) and not based on the current DSM system of disorders. One study of Alaska Natives seen in a community mental health center indicated that substance abuse is a common reason for
71 men (85% of those seen) and women (65% of those seen) to seek mental health care
(Aoun & Gregory, 1998).
Children and Youth
Two recent studies examined the need for mental health care among American Indian youth. The Great Smoky Mountain Study assessed psychiatric disorders among 431 youth ages 9 to 13 (Costello et al., 1997). Children were defined as American Indian if they were enrolled in a recognized tribe or were first- or second-generation descendants of an enrolled member. Overall, American Indian children were found to have fairly similar rates of disorder (17%) in comparison to white children from surrounding counties (19%). Lower rates of tics (2 vs. 4%) and higher rates of substance abuse or dependence (1 vs. 0.1%) were found in American Indian children as compared with white children. The difference in substance abuse is almost totally accounted for by alcohol use among 13-year-old Indian children (Costello et al., 1997). Rates of anxiety disorders, depressive disorders, conduct disorders, and attention-deficit/hyperactivity disorder (AD/
HD) were not significantly different for American Indian and white children. Yet, for white children, poverty doubled the risk of mental disorders, whereas poverty was not associated with increased risk of mental disorders among the American Indian children.
Overall, these American Indian children appeared to experience rates of mental disorders similar to those for white children.
72 The second study reported a followup of a school-based psychiatric epidemiological study involving Northern Plains youth, 13 to 17 years of age (Beals et al., 1997). Of 109 adolescents, 29 percent received a diagnosis of at least one psychiatric disorder.
Altogether, more than 15 percent of the students qualified for a single diagnosis; 13 percent met criteria for multiple diagnoses. In terms of the broad diagnostic categories, 6 percent of the sample met criteria for an anxiety disorder, 5 percent for a mood disorder
(either major depressive disorder or dysthymia), 14 for one or more of the disruptive behavior disorders, and 18 percent for substance abuse disorders. Only 1 percent was diagnosed with an eating disorder. The five most common specific disorders were alcohol dependence or abuse (11%), attention- deficit/hyper-activity disorder (11%), marijuana dependence or abuse (9%), major depressive disorder (5%), and other sub-stance dependence or abuse (4%). Considerable comorbidity among disorders was observed.
More than half of those with a disruptive behavior disorder also qualified for a substance use disorder. Similarly, 60 percent of those youth diagnosed with any depressive disorder had a substance use disorder as well.
Beals and colleagues compared their findings with those reported for nonminority children drawn from the population at large (Lewinsohn et al., 1993; Shaffer et al., 1996).
The American Indian youth were diagnosed with fewer anxiety disorders than the nonminority children in the Shaffer sample. However, American Indian adolescents were much more likely to be diagnosed with AD/HD and substance abuse or substance dependence disorders. The rates of conduct disorder and oppositional defiant disorder
73 were also elevated in the American Indian sample. Rates of depressive disorders were essentially equivalent. This latter finding was consistent with a study published in 1994
(Sack et al., 1994) that reported clinical depression among youth from several reservations below 1 percent, “a prevalence rate compatible with other studies in white populations, which typically varies from 1 to 3 percent” (Fleming & Offord, 1990). When compared with the Lewinsohn sample, American Indian adolescents in the study by Beals and colleagues demonstrated statistically significant higher 6-month prevalence rates than did the nonminority children for lifetime prevalence of ADHD and alcohol abuse/ dependence. In addition, the American Indian youth had higher 6-month rates of simple phobias, social phobias, overanxious disorder, and oppositional defiant and conduct disorders than the nonminority children’s lifetime rates for those disorders.
At present, there are no published estimates of the rates of mental disorders among
Alaska Native youth. One study of Eskimo children seen in a community mental health center in Nome, Alaska, indicated that sub-stance abuse, including alcohol and inhalant use, and previous suicide attempts are the most common types of problems for which these children receive mental health care (Aoun & Gregory, 1998). An earlier study found a high need for mental health care among Yup’ik and Cup’ik adolescents who were in boarding schools (Kleinfeld & Bloom, 1977), but current DSM diagnostic categories were not used.
74 Box 4–1:
Charlie (age 9); Mike (father, age 29)
Charlie frequently argued with teachers and started fights with other children. Charlie’s schoolteacher recommended him for counseling because of his acting out in school. Charlie had lived all his life with his mother and two younger siblings on their Southwestern reservation. Charlie’s father, Mike, lived in the home until Charlie was 3 years old, when he was sent to prison for attempted murder of Charlie’s mother. Mike was a chronic alcoholic who frequently battered his wife when their arguments became heated. Charlie often witnessed violence between his mother and father and was aware of the circumstances leading to his father’s imprisonment. During Mike’s incarceration, Charlie visited him in prison and maintained regular contact by mail and phone. At the time of Charlie’s referral, Mike had been out of prison for one year and had just returned home from a 30-day alcohol rehabilitation program. Mike had been the youngest of eight children; his mother, the primary caretaker, sent Mike away to boarding school because she was unable to care for him. Mike never had contact with his father, whom he described as “an alcoholic and a womanizer.” Although Mike recognized the economic hardship his mother faced after his father left, he nonetheless felt abandoned by her and frequently wondered why she had had him in the first place. Mike described boarding school as a constant struggle. On the weekends and holidays, Mike rarely went home; his family did not visit him. Over the years, Mike felt great sadness over his childhood loss and great anger toward his mother for her complete abandonment of him. In addition to being physically abusive toward his wife, Mike frequently fought other men. He often felt great rage and was easily provoked into violence, especially during times of drunkenness. Mike was a talented artist who created pottery and woodwork designs that were derived from traditional practices within his tribe. He was a full-blooded member of his tribe. Though raised on the reservation, he spent most of his life shuttling between it and various institutions, such as boarding school, prison, and alcohol rehabilitation facilities. In talking about his childhood, Mike was confused and incoherent, especially about his parents. He sometimes needed to leave the therapeutic setting because he had become so agitated by these feelings. 75 Mike was preoccupied with the sense that he had been dealt a bad lot in life. This contributed to his quickness to see that others were betraying him and thus needed to be dealt with swiftly and harshly without forgiveness. At the time of Charlie’s referral, Mike was newly committed to being a parent. Mike wanted to teach his children about his art and culture, to play sports with them, and to guide them in ways that he had not been guided. Mike acknowledged that the problems Charlie was having were not unlike the problems he had as a child. He had not appreciated the impact that the rage rooted in his own childhood experience of abandonment had on Charlie’s development. In witnessing the violence that his father let explode on his mother, Charlie had learned to fear his father and to feel powerless to protect his mother. Charlie appears to be making up for this powerlessness at home by dominating his peers through his own acts of violence. (Adapted from Christensen & Manson, 2001) Older Adults
Although large-scale studies of mental disorders among older American Indians are lacking, Manson (1992) found that over 30 percent of older American Indian adults visiting one urban IHS outpatient medical facility reported significant depressive symptoms; this rate is higher than most published estimates of the prevalence of depression among older whites with chronic illnesses (9 to 31%) (Berkman et al., 1986).
In another clinic-based investigation, nearly 20 percent of American Indian elders who received primary care reported significant psychiatric symptoms (Goldwasser & Badger,
1989), with rates increasing as a function of age. These findings are consistent with a survey of older, community-dwelling, urban Natives in Los Angeles, among whom more than 10 percent reported depression, and an additional 20 percent reported sadness and grieving (Kramer, 1991).
76 A recent study of 309 Great Lakes American Indian elders revealed that 18 percent of the sample scored above a traditional cutoff for depression on the Center for Epidemiology
Studies Depression Scale (CES–D) (Curyto et al., 1998, 1999). However, upon further examination of that data, the factor structure of the CES–D was found to be different in this population as compared to available norms (Chapleski, Lamphere, et al., 1997).
Therefore, the concern remains that the CES–D may not accurately measure depressive symptoms in this population. Nonetheless, depressive symptoms were strongly associated with impaired functioning (Chapleski, Lichtenberg, et al., 1997), which is in keeping with past findings (Baron et al., 1990) and underscores the burden posed by such distress, as well as the need for intervention (Manson & Brenneman, 1995).
Mental Health Problems
Symptoms
Although little is known about rates of psychiatric disorders among American Indians and
Alaska Natives in the United States, one recent, nationally representative study looked at mental distress among a large sample of adults (Centers for Disease Control and
Prevention, 1998). Overall, American Indians and Alaska Natives reported much higher rates of frequent distress—nearly 13 percent compared to nearly 9 percent in the general population. The findings of this study suggest that American Indians and Alaska Natives experience greater psychological distress than the overall population.
Somatization
77 The distinction between mind and body common among individuals in industrialized
Western nations is not shared throughout the world (Manson & Kleinman, 1998; Manson,
2000). Many ethnic minorities do not discriminate bodily from psychic distress and may express emotional distress in somatic terms or bodily symptoms. Relatively little empirical research is available concerning this tendency among American Indians and
Alaska Natives. However, a sample of 120 adult American Indians belonging to a single
Northwest Coast tribe was screened using the Center for Epidemiologic Studies
Depression Scale, which includes both psychological and somatic symptoms. Analyses showed that somatic complaints and emotional distress were not well differentiated from each other in this population (Somervell et al., 1993). Other inquiries into the psychometric properties of the CES–D and other measures of depressive symptoms among American Indians have yielded similar findings, providing some evidence of the lack of such distinctions within this population (Ackerson et al., 1990; Manson et al.,
1990).
Culture-Bound Syndromes
A large body of ethnographic work reveals that some American Indians and Alaska
Natives, who may express emotional distress in ways that are inconsistent with the diagnostic categories of the DSM, may conceptualize mental health differently. Many unique expressions of distress shown by American Indians and Alaska Natives have been described (Trimble et al., 1984; Manson et al., 1985; Manson 1994; Nelson & Manson,
2000). Prominent examples include ghost sickness and heart-break syndrome (Manson et
78 al., 1985). The question becomes how to elicit, understand, and incorporate such
expressions of distress and suffering within the assessment and treatment process of the
DSM–IV.
Suicide
Given the lack of information about rates of mental disorders among American Indian
and Alaska Native populations, the prevalence of suicide often serves as an important
indicator of need. The Surgeon General’s 1999 Call to Action to Prevent Suicide indicates that from 1979 to 1992, the suicide rate for this ethnic minority group was 1.5 times the national rate. The suicide rate is particularly high among young Native American males ages 15 to 24. Accounting for 64 percent of all suicides by American Indians and Alaska
Natives, the suicide rate of this group is 2 to 3 times higher than the general U.S. rate
(May, 1990; Kettle & Bixler, 1991; Mock et al., 1996). In another survey of American
Indian adolescents (n = 13,000), 22 percent of females and 12 percent of males reported having attempted suicide at some time; 67 per-cent who had made an attempt had done so within the past year (Blum et al., 1992). Furthermore, an analysis of Bureau of Vital
Statistics death certificate data from 1979 to 1993 found that “Alaska Native males had one of the highest documented suicide rates in the world” (1997). Alaska Natives, in general, were more likely to commit suicide than non-Natives living in Alaska (Gessner,
1997). It is important to note that violent deaths (unintentional injuries, homicide, and suicide) account for 75 percent of all mortality in the second decade of life for American
Indians and Alaska Natives (Resnick et al., 1997).
79 High-Need Populations
American Indians and Alaska Natives are the most impoverished ethnic minority group in the United States. Although no causal links have yet been demonstrated, there is good reason to suspect that the history of oppression, discrimination, and removal from traditional lands experienced by Native people has contributed to their current lack of educational and economic opportunities and their significant representation among populations with high need for mental health care.
Individuals Who Are Homeless
American Indians and Alaska Natives are overrepresented among people who are homeless. Although they comprise less than 1 percent of the general population,
American Indians and Alaska Natives constitute 8 per-cent of the U.S. homeless population (U.S. Census Bureau, 1999a). It is not clear that homeless American Indians and Alaska Natives are at greater risk of mental disorder than their non-Native counterparts. In one study, American Indian veterans who were homeless had fewer psychiatric diagnoses than did white veterans who were homeless (Kasprow &
Rosenheck, 1998), although these differences were relatively small. Nevertheless, because there are more individuals with mental disorders among the homeless population than among the general population (Koegel et al., 1988), this finding likely points to a substantial number of Native people with a high need for mental health care.
80 Individuals Who Are Incarcerated
In 1997, an estimated 4 percent of racially identified American Indian and Alaska Native adults were under the care, custody, or control of the criminal justice system. Also,
16,000 adults in this group were held in local jails (Bureau of Justice Statistics, 1999).
Although research specific to rates of mental disorders among American Indian and
Alaska Native adults in jails is not available, a recent study has evaluated disorders among incarcerated adolescents. Rates of mental disorders among those held in a
Northern Plains reservation juvenile detention facility were examined (Duclos et al.,
1998). Among the 150 youth evaluated, nearly half (49%) had at least one alcohol, drug, or mental health disorder. The most common problems detected were substance abuse, conduct disorder, and depression.
These rates were higher than those found in Indian adolescents in the community, indicating that incarcerated American Indians are likely to be at high need for mental health and substance abuse interventions.
Individuals with Alcohol and Drug Problems
Actual rates of alcohol abuse among American Indian adults are difficult to estimate, yet indirect evidence suggests that a substantial proportion of this population suffers from this problem. For example, the estimated rate of alcohol-related deaths for Indian men is
27 percent and for Indian women 13 percent (May & Moran, 1995). Rates appear to vary widely among different tribes. Although the topic of substance abuse is beyond the scope of this Supplement, alcohol problems and mental disorders often occur together in
81 American Indian and Alaska Native populations (Westermeyer, 1982; Whittaker, 1982;
Westermeyer & Peake, 1983; Kinzie et al., 1992; Beals et al., 2001). A recent study, which sought to understand the link between alcohol problems and psychiatric disorders in American Indians, included over 600 members of three large families (Robin et al.,
1997a). More than 70 percent qualified for a lifetime diagnosis of alcohol disorders.
Among both men and women, those who were alcohol-dependent were also more likely to have psychiatric disorders, as were those who engaged in binge-drinking behavior.
This finding underscores the likelihood that American Indians with alcohol disorders are at high risk for concomitant mental health problems.
Given the high rates of alcohol abuse among some American Indians and Alaska Natives, fetal alcohol syndrome is an important influence on mental health needs (May et al.,
1983). The Centers for Disease Control and Prevention (1998) monitored the rate of fetal alcohol syndrome (FAS), identifying cases based on hospital discharge diagnoses collected from more than 1,500 hospitals across the United States between 1980 and
1986. The overall rate of FAS was 2.97 per 1,000 for Native Americans, 0.6 per 1,000 for
African Americans, 0.09 for Caucasians, 0.08 for Hispanics, and 0.03 for Asians (Chavez et al., 1988). As might be expected given the fact that physicians often do not identify this disease, these rates are much lower than those found in clinic-based investigations
(Stratton et al., 1996). Fetal alcohol syndrome now is recognized as the leading known cause of mental retardation in the United States (Streissguth et al., 1991), surpassing
Down’s syndrome and spina bifida. Fetal alcohol syndrome is not just a childhood disor
82 der; predictable long-term progression of the disorder into adulthood includes maladaptive behaviors such as poor judgment, distractibility, and difficulty perceiving social cues. Consequently, American Indians and Alaska Natives with fetal alcohol syndrome are likely to have high need for intervention to facilitate the management of their disabilities.
Drinking by American Indian youth has been more thoroughly studied than drinking by
American Indian adults. Ongoing school-based surveys have shown that, although about the same proportion of Indian and non-Indian youth in grades 7 to 12 have tried alcohol,
Indian youth who drink appear to drink more heavily than do youth of other ethnicities
(Plunkett & Mitchell, 2000; Novins et al., under review). They also experience more negative social consequences from their drinking than do their non-Indian counterparts
(Oetting et al., 1989; Mitchell et al., 1995). Although drinking and mental disorders may be less linked for youth than for adults, those adolescents with serious drinking problems are likely to be at risk for mental health problems as well (Beals et al., 2001).
Individuals Exposed to Trauma
Lower socioeconomic status is associated with an increased likelihood of experiencing undesirable life events (McLeod & Kessler, 1990). As a result of lower socioeconomic status, American Indians and Alaska Natives are also more likely to be exposed to trauma than members of more economically advantaged groups. Exposure to trauma is related to the development of sub-sequent mental disorders in general and of post-traumatic stress
83 disorder (PTSD) in particular (Kessler et al., 1995). Recent evidence suggests that
American Indians may be at high risk for exposure to trauma.
An investigation of Northern Plains youth ages 8 to 11 found that 61 percent of them had been exposed to some kind of traumatic event. These children were reported to have more trauma-related symptoms, but not substantially higher rates of diagnosable PTSD (3%)
(Jones et. al., 1997). According to the Bureau of Justice Statistics (1999), the rate of violent victimization of American Indians is more than twice as high as the national average. Indeed, the data regarding reported child abuse in Native communities indicate that this phenomenon has increased 18 percent in the last 10 years (Bureau of Justice
Statistics, 1999). Another study noted a high prevalence of trauma exposure (e.g., car accidents, deaths, shootings, beatings) and PTSD within those in the family study mentioned above (Robin et al., 1997c). Of those studied, 82 percent had been exposed to one traumatic event, and the prevalence of PTSD was 22 percent. Because American
Indians probably are similar to non-Indians in their likelihood of developing PTSD after a traumatic exposure (Kessler et al., 1995), the substantially higher prevalence of the disorder (22% for AI/AN vs. 8% in the general community) does not signal greater vulnerability to PTSD, but rather higher rates of traumatic exposure.
Maltreatment and neglect have been shown to be relatively common among older urban
American Indian and Alaska Native patients in primary care. A chart review of 550
Native adults 50 years of age or older seen at one of the country’s largest, most
84 comprehensive, urban Indian health programs during one calendar year revealed that 10 percent met criteria for definite and probable physical abuse or neglect (Buchwald et al.,
2000). After control-ling for other factors in a logistic regression model, patient age, female gender, alcohol abuse, domestic violence, and current depression remained significant correlates of physical abuse or neglect of these Native elders.
The previously mentioned American Indian Vietnam Veterans Project (AIVVP) replicated the National Vietnam Veterans Readjustment Study that examined psychiatric disorders among African American, Latino, and white veterans (Kulka et al., 1990). Between 1992 and 1995, researchers evaluated random samples of Vietnam combat veterans drawn from three Northern Plains reservations (n = 305) and one Southwest reservation (n = 316).
Approximately one-third of the Northern Plains (31%) and Southwestern (27%)
American Indian participants had PTSD at the time of the study. Approximately half had experienced the disorder in their lifetimes (57% and 45%, respectively). This rate is far in excess of rates of current PTSD for white veterans (14%) and for black veterans (21%)
(Kulka et al., 1990). The excess rates, however, were largely attributable to the fact that
American Indian veterans had been exposed to more combat-related traumas than their non-Indian peers (National Center for Post-Traumatic Stress Disorder and the National
Center for American Indian and Alaska Native Mental Health Research, 1996; Beals et al., under review).
Children in Foster Care
Studies have consistently indicated that children who are removed from their homes are at increased risk for mental health problems (e.g., Courtney & Barth, 1996), as well as for
85 serious subsequent adult problems such as homelessness (Koegel et al., 1995). By the mid-1970s, many American Indian children were experiencing out-of-home placements.
In Oklahoma, four times as many Indian children were either adopted or in foster care as investigation that led to the passage of the act concluded non-Indian children. In New
Mexico, twice as many that “a pattern of discrimination against American Indian children were in foster care than any other minor-Indians is evident in the area of child welfare, and it is ity group. Estimates suggest that as many as 25 to 30 the responsibility of
Congress to take whatever action is percent of American Indian children have been removed within its power to see that Indian communities and their from their families
(Cross, et al., 2000). As a result, families are not destroyed” (Fischler, 1985). Congress passed the Indian Child Welfare Act in 1978 to Accordingly, in 1999, the number of
American Indian protect American Indian children. The Congressional and Alaska Native children in foster care had decreased to 1 percent of all children in foster care in the United States (DHHS, 1999). Yet the mental health consequences for the children, now adults, who were placed out of their homes, especially those placed in non-Indian homes, during this lengthy period of mass cultural dislocation is not known (Nelson et al., 1996; Roll, 1998).
Box 4–2
John : Vietnam Combat Veteran (age 45) John is a 45-year-old, full-blood Indian, who is married and has 7 children. The family lives in a small, rural community on a large reservation in Arizona. John served as a Marine Corps infantry squad 86 leader in Vietnam during 1968–1969. He most recently was treated through a VA medical program, where he participates in a post-traumatic stress disorder (PTSD) support group. John suffers from alcoholism, which began soon after his initial patrols in Vietnam. These involved heavy combat and, ultimately, physical injury. He exhibits the hallmark symptoms of PTSD, including flashbacks, nightmares, intrusive thoughts on an almost daily basis, marked hypervigilance, irritability, and avoidant behavior. Some 10 years after his return from Vietnam, John began cycling through several periods of treatment for his alcoholism in tribal residential programs. It wasn’t until one month after he began treatment for his alcoholism at a local VA facility that a provisional diagnosis of PTSD was made. Upon completing that treatment, he transferred to an inpatient unit specializing in combat-related trauma. John left the unit against medical advice, sober but still experiencing significant symptoms. John speaks and understands English well; he also is fluent in his native language, which is spoken in his home. John is the descendant of a family of traditional healers. Consequently, the community expected him to assume a leadership role in its cultural and spiritual life. However, boarding school interrupted his early participation in important aspects of local ceremonial life. His participation was further delayed by military service and then fore-stalled by his alcoholism. During boarding school, John was frequently harassed by non-Indian staff for speaking his native language, for wearing his hair long, and for running away. Afraid of similar ridicule while in the service, he seldom shared his personal background with fellow infantrymen. Yet John was the target of racism, from being selected to act as point on patrol because he was an Indian to being called “Chief” and “blanket ass.” Until recently, tribal members had never heard of PTSD, but now frequently refer to it as the “wounded spirit.” His community has long recognized the consequences of being a warrior, and indeed, a ceremony has evolved over many generations to prevent as well as treat the underlying causes of these symptoms. Within this tribal worldview, combat-related trauma upsets the balance that underpins someone’s personal, physical, mental, emotional, and spiritual health. The events in John’s life (the Vietnam war, his father’s death, and his impairment due to PTSD and alcoholism) conspired to prevent his participation in this and other tribal ceremonies. John attends a VA-sponsored support group, comprised of all Indian Vietnam veterans, which serves as an important substitute for the circle of “Indian drinking buddies” from whom he eventually separated as part of his successful alcohol treatment. John reports having left the VA’s larger PTSD inpatient program because of his discomfort with its non-Native styles of disclosure and expectations regarding personal reflection. Through the VA’s Indian support group, he joined a local gourd society that honors warriors and dances prominently at pow-wows. His sobriety has been aided by involvement in the Native American Church, with its reinforcement of his decision to remain sober and its support for positive life changes. Though John has a great deal of work ahead of him, he feels that he is now ready to participate in the tribe’s major ceremonial intended to bless and purify its warriors. His family, once alienated but now reunited, is busily preparing for that event. (Adapted from Manson, 1996). Availability, Accessibility, and Utilization of Mental Health Services
The historical and current socioeconomic factors presented highlight several elements that may affect the use of mental health services by American Indians and Alaska
87 Natives. Foremost, given the history of this ethnic group’s relationship with the U.S.
Government, many American Indian and Alaska Native people may not trust institutional sources of care and may be unwilling to seek help from them. Second, mental health services are quite limited in the rural and isolated communities where many Indian and
Native peoples live. Alaska Natives, in particular, have little mental health care available to them, as is the case of Alaskans generally (Rodenhauser, 1994). Although little is known about the role of mental health care within American Indian and Alaska Native life, there is some evidence regarding their use of such services.
Availability of Mental Health Services
There is little information to indicate whether American Indians and Alaska Natives are more likely to seek care if it is available from ethnically similar, as opposed to dissimilar providers. Although there is likely to be great variability regarding this preference, given the historical relationships between Native people and white authorities, a proportion of the population is likely to prefer ethnically matched providers (Haviland et al., 1983).
However, the fact is that few American Indian and Alaska Native mental health professionals are available. Approximately 101 American Indian and Alaska Native mental health providers (psychiatrists, psychologists, social workers, psychiatric nurses, and counselors) are available per 100,000 members of this ethnic group; this compares with 173 per 100,000 for whites (Manderscheid & Henderson, United States, 1998). The scarcity of American Indian and Alaska Native psychiatrists is particularly striking. In
1996, only an estimated 29 psychiatrists in the United States were of Indian or Native
88 heritage. The same scarcity exists among other physicians as well, whereas American
Indians and Alaska Natives make up close to 1 percent of the population, only .0003 percent of physicians in the United States identify themselves as American Indians or
Alaska Natives.
Accessibility of Mental Health Services
As noted earlier, the Federal Government has responsibility for providing health care to the members of over 500 federally recognized tribes through the Indian Health Service
(IHS). However, only 1 in 5 American Indians reports access to IHS services (Brown et al., 2000). IHS services are provided largely on reservations; consequently, Native people living elsewhere have quite limited access to this care. Furthermore, American Indian tribes that are recognized by their State, but not by the Federal Bureau of Indian Affairs, are ineligible for IHS funding (Brown et al., 2000).
In addition, according to a recent report based on national data, only about half of
American Indians and Alaska Natives have employer-based insurance cover-age; this is in contrast to 72 percent of whites. Medicaid is the primary source of coverage for 25 percent of American Indians and Alaska Natives, particularly for the poor and near poor;
24 percent of American Indians and Alaska Natives do not have health insurance (Brown et al., 2000).
These circumstances are compounded by the dramatic change which the IHS is undergoing as a consequence of tribal options to self-administer Federal functions under
89 the contracting or compacting provisions of P. L. 93–638. The attendant downsizing of
Federal participation in Indian health care has diminished local ability to recover
Medicaid, Medicare, and private reimbursement, leading to fewer resources to support health care delivery to Native people.
Recent policy changes enable tribes to apply directly for substance abuse block-grant funds, independent of the states in which they reside. No such provision is available with respect to mental health block grants, but it is the subject of increasing discussion. It is not known, however, if these changes in policy have or will have increased Federal support of relevant programs at the local level.
Utilization of Mental Health Services
Community Studies
Representative community studies of American Indians and Alaska Natives have not been published, so little is known about the use of mental health services among those with established need. A previously mentioned study that examined the relationship of substance abuse and psychiatric disorders among family members (Robin et al., 1997b) also considered their use of mental health services. Of those with a mental disorder, only
32 per-cent had received mental health or substance abuse services. Although the special design of this study does not permit generalization of its findings to the community at large, it is noteworthy that very low rates of service use were observed among those most in need of care.
90 The use of mental health services by American Indian children with mental disorders has been the subject of several recent studies. For instance, the Great Smoky Mountain Study examined mental health service use among Cherokee and non-Indian youth living in adjacent western North Carolina communities (Costello et al., 1997). Among Cherokee children with a diagnosable DSM–III–R psychiatric disorder, 1 in 7 received professional mental health treatment. This rate is similar to that for the non-Indian sample. However,
Cherokee children were more likely to receive this treatment through the juvenile justice system and inpatient facilities than were the non-Indian children. Similarly, in a small study of Plains Indian students in the north-central United States, more than one-third
(39%) of those with psychiatric disorders (21%) used services at some time during their lives (Novins, et al., 2000). Two-thirds of those who received services were seen through school; just one adolescent was treated in the specialty mental health system. Among those youth with a psychiatric disorder who did not receive services, over half were recognized as having a problem by a parent, teacher, or employer.
Finally, the use of mental health services by incarcerated American Indian youth also has been considered in the literature (Novins, et al., 1999). The previously described study in a Northern Plains reservation juvenile detention facility found that about one-third of the youth suffering from a mental disorder reported having received treatment at some point in their lives, and 40 percent of those with a substance abuse disorder had done so.
Overall, service use was greater among these detained youth than among their
91 counterparts in the community. However, substantial unmet need was still evident. While services for substance-related problems were most commonly provided in residential settings, services for emotional problems typically were delivered through outpatient settings. Traditional healers and pastoral counselors provided more than one-quarter of the services received by these youth.
Mental Health Systems Studies
When data regarding the use of services by individuals who suffer from mental disorders is as limited as it is for American Indians and Alaska Natives, data generated by the overall health system may provide insight into how effective the mental health sector is in meeting the needs. However, in the case of Native people, there are two problems with this approach. First, rates of service use are related to the prevalence of mental illness in the tar-get group. Given that American Indians and Alaska Natives may differ from white
Americans in their respective rates of mental disorder, comparisons of this nature may not accurately identify differences in unmet need for care. Second, as noted in the initial
SGR, less than one-third of adults with a diagnosable mental disorder receive care within a year. Therefore, disparities in care received must be interpreted in light of differences in the use of services by those in need, which appears to vary by ethnicity. With these cautions in mind, what does the available evidence suggest?
An evaluation of national data from 1980 to 1981 found that American Indians and
Alaska Natives were admitted to state and county hospitals at higher rates than whites
92 (Snowden & Cheung, 1990). This pattern was true for psychiatric services at non-Federal hospitals and at Veterans Administration (VA) medical centers. At private psychiatric hospitals, however, American Indians and Alaska Natives were admitted at a lower rate than whites. With all the rates combined, there were more American Indian and Alaska
Natives than whites in inpatient psychiatric units, with even greater rates of admission if
IHS hospitals were included (Snowden & Cheung, 1990). Conversely, data from 1983
(Cheung & Snowden, 1990) and again from 1986 (Breaux & Ryujin, 1999) suggested that American Indians used inpatient facilities at rates equal to their proportion in the general population.
These same studies also looked at use of outpatient mental health services (Cheung &
Snowden, 1990; Breaux & Ryujin, 1999). In both, American Indians and Alaska Natives were found to use outpatient mental health services at a rate similar to their representation in the U.S. population. Yet, two smaller studies of use of outpatient care in Seattle found greater than expected use by American Indians and Alaska Natives (Sue, 1977;
O’Sullivan et al., 1989). Just as important, fewer than half of the American Indian clients who were seen returned after the initial contact, which was a significantly higher nonreturn rate than was observed for African American, Asian, Hispanic, and white clients.
93 The picture with respect to mental health service use by American Indians and Alaska
Natives is inconsistent and puzzling. But there is a clear indication of significant need equal to, if not greater than, the need of the general population.
Complementary Therapies
Several targeted studies suggest that in many cases American Indians and Alaska Natives use alternative therapies at rates that are equal to or greater than the rates for whites. For example, 62 percent of Navajo patients interviewed at a rural IHS clinic in New Mexico had used native healers, and 39 percent reported using native healers on a regular basis
(Kim & Kwok, 1998). In another study, 38 percent of the individuals interviewed in an urban clinic in Wisconsin (representing at least 30 tribal affiliations) reported concurrent use of a native healer. Of those who were not currently seeing a native healer, 9 out of 10 would consider seeing one in the future (Marbella et al., 1998). A third study at one of the country’s largest, most comprehensive urban primary care programs for Indians in
Seattle, Washington, revealed that two-thirds of the 871 patients sampled employed traditional healing practices regularly and felt that such practices significantly improved their health status (Buchwald, et al., 2000). Use was strongly associated with cultural affiliation, poor functional status, alcohol abuse, dysphoria, and trauma, but not with specific medical problems (except for musculoskeletal pain). In all these studies, alternative therapies and healers were generally used to complement care received by mainstream sources, rather than as a substitute for such care.
94 In a study of mental health service utilization by American Indian veterans in two tribes, use of both traditional Native American and mainstream medical services was markedly apparent (Gurley et al., 2001). Overall, they used services much less for mental health problems than for physical health problems. IHS facilities were equally available to both tribes, but VA services were available more readily to one of them. Within the tribe with less access to VA services, more traditional healing services were used, so that similar amounts of care were received. This demonstrates that need drives service utilization, although local availability of care dictates the forms that such service may assume.
Appropriateness and Outcomes of Mental Health Services
During the past decade, many guidelines for treating mental disorders have been offered to ensure the provision of evidence-based care. Even though few American Indians or
Alaska Natives were included in the studies that led to their development, such professional practice guidelines offer the clearest, most carefully considered recommendations available regarding appropriate treatment for this population. They therefore warrant special attention.
The DSM–IV, both within the main text and in its “Outline for Cultural Formulation,” does provide clear guidelines for addressing cultural matters, including those specific to this population, in the assessment and treatment of mental health problems (Manson &
Kleinman, 1998; Mezzich et al., 1999). A growing body of case material demonstrates the
95 utility of applying these guidelines to American Indian children (Novins et al., 1997), as well as to adults (Fleming, 1996; Manson, 1996; O’Nell, 1998).
Novins and colleagues (1997) critically analyzed the extension of the “Outline for
Cultural Formulation” to American Indian children. Drawing upon rich clinical material, they demonstrated the merits and utility of this approach for understanding the emotional, psychological, and social forces that often buffet Native children. However, Novins and his colleagues underscored the importance of obtaining the perspectives of adult family members and teachers, as well as the children them-selves, which is not explicitly considered in the formulation.
No studies have been published regarding the out-comes associated with standard psychiatric care for American Indians and Alaska Natives. Hence, it is not known if practitioners accurately diagnose the mental health needs of American Indians and Alaska
Natives, nor whether they receive the same benefits from guideline-based psychiatric care as do whites. For this we must await related studies of treatment outcome, studies that venture beyond the limitations of current thinking with respect to intervention technology and best practices.
Mental Illness Prevention and Mental Health Promotion
Up to this point, the chapter has focused on the prevalence, risk, assessment, and treatment of mental illness among American Indian and Alaska Native youth and adults.
96 The public health model that guides this Supplement stresses the importance of preventive and promotive interventions as well. Indeed, virtually any serious dialogue at both local and national levels about mental health and well-being among American
Indians and Alaska Natives underscores the central place of preventive and promotive efforts in the programmatic landscape (Manson, 1982).
Preventing Mental Illness
Among Indian and Native people, efforts to prevent mental illness have been overshadowed by a much more aggressive agenda in regard to preventing alcohol and drug abuse (May & Moran, 1995). The research literature mirrors a similar emphasis on interventions intended to prevent or ameliorate developmental situations of risk, with special emphasis on family, school, and community (Manson, 1982; Beiser & Manson,
1987; U.S. Congress, 1990).
As discussed earlier, poverty and demoralization combine with rapid cultural change to threaten effective parenting in many Native families. This can lead to increased neglect and abuse and ultimately to the removal of children into foster care and adoption
(Piasecki et al., 1989). Poverty, demoralization, and rapid culture change also increase the risk for domestic violence, spousal abuse, and family instability, with their attendant negative mental health effects (Norton & Manson, 1995; Christensen & Manson, 2001).
The preventive interventions that have emerged in response to such deleterious circumstances in American Indian communities are particularly creative, in form as well
97 as in reliance upon cultural tradition. One example is the introduction of the indigenous concept of the Whipper Man, a nonparental disciplinarian, into a Northwest tribe’s group home for youth in foster care (Shore & Nicholls, 1975). This unique mechanism of social control, coupled with placement counseling and intensive family outreach, significantly enhanced self-esteem, decreased delinquent behavior, and reduced off-reservation referrals (Shore & Keepers, 1982). Another example is a developmental intervention that targeted Navajo family mental health (Dinges et al., 1974). This effort sought to improve stress resistance in Navajo families whose social survival was threatened and to prepare their children to cope with a rapidly changing world. It focused on culturally relevant developmental tasks and the caregiver-child interactions thought to support or increase mastery of these tasks. Delivered through home visits by Navajo staff, the intervention promoted cultural identification, strengthened family ties, and enhanced child and caregiver self-images (Dinges, 1982).
Fueled by longstanding concern regarding the disruptive nature of boarding schools for the emotional development of Indian youth, early prevention programs focused largely on social and cultural enrichment. The most widely known of these early efforts is the Toyei
Model Dormitory Project, which improved the ratio of adult dormitory aides to students, replaced non-Navajo houseparents with tribal members, and trained them to be both caretakers and surrogate parents (Goldstein, 1974). As a result, youth in the Toyei model dormitory showed accelerated intellectual development, better emotional adjustment, and superior performance on psychomotor tests. The promise of this approach was slow to be
98 realized, however, in part because of a change in Federal policy away from boarding school education for American Indians and Alaska Natives, and in part because local control over educational settings in Indian communities was rare until recently
(Kleinfeld, 1982). Schoolwide interventions only now are emerging in Native communities, as successful litigation and legislative change in funding mechanisms transfer to tribes the authority to manage health and human services, including education
(Dorpat, 1994).
Targeted prevention efforts have flourished in tribal and public schools. Most have centered on alcohol and drug use, but a growing number of programs are being designed and implemented with a specific mental health focus, typically suicide prevention
(Manson et al., 1989; Duclos & Manson, 1994; Middlebrook et al., 2001). These preventive interventions take into account culture-specific risk factors: lack of cultural and spiritual development, loss of ethnic identity, cultural confusion, and acculturation.
Careful evaluation of their effects, though still the exception, illustrates, as in the case of the Zuni Life Skills Development Curriculum, the significant gains that can accompany such investments (LaFromboise & Howard-Pitney, 1994).
With increasing frequency, entire Indian and Native communities have become both the setting and the agent of change in attempts to ameliorate situations of risk and to prevent mental illness. Among the earliest examples is the Tiospaye Project on the Rosebud Sioux
Reservation in South Dakota, which entailed organizing a series of community
99 development activities that were cast as the revitalization of the tiospaye, an expression of traditional Lakota lifestyle based on extended family, shared responsibility, and reciprocity (Mohatt & Blue, 1982). More recent ones include the Blue Bay Healing
Project among the Salish-Kootenai of the Flathead Reservation (Fleming, 1994) and the
Western Athabaskan “Natural Helpers” Program (Serna et al., 1998). Both of these community-based interventions marshaled local cultural resources consistent with long- held tribal traditions, albeit in quite different ways that reflected their distinct orientations. Other nationwide initiatives, such as those mentioned earlier in this chapter, are likewise deeply steeped in the emphasis on community solutions to community problems.
Promoting Mental Health
Indian and Native people are quick to observe that the prevention of mental illness—with its goals of decreasing risk and increasing protection—is defined by a disease-oriented model of care. Although this approach is valued, professionals are encouraged by Indian and Native people to move beyond the exclusive concern with disease models and the separation of mind, body, and spirit, to consider individual as well as collective strengths and means in the promotion of mental health.
There is less clarity about and little common nomenclature for such strengths, their relationship to mental health, and technologies for promoting them than there is for risk,
100 mental illness, and prevention. Even less data exist upon which to base empirical discussions about tar-gets for promotion and outcomes, but there are relevant intellectual histories that suggest this is no quixotic quest. For example, the contemporary literature on psychological well-being has its roots in past work on dimensions of positive mental health and the related concept of happiness (Jahoda, 1958; Bradburn, 1969), which have evolved into the closely related constructs of competence, self-efficacy, mastery, empowerment, and communal coping (David, 1979; Swift & Levin, 1987; Sternberg &
Kolligian, 1990; Bandura, 1991). Clear parallels exist between these ideas and central themes for organizing life in Native communities. Consider, for example, the concept of hozhq in the Navajo worldview:
Kluckhohn identified hozhq as the central idea in Navajo religious thinking. But it is not something that occurs only in ritual song and prayer; it is referred to frequently in everyday speech. A Navajo uses this concept to express his happiness, health, the beauty of his land, and the harmony of his relations with others. It is used in reminding people to be careful and deliberate, and when he says good-bye to someone leaving, he will say hozhqqgo naninaa doo “may you walk or go about according to hozhq.” (Witherspoon,
1977)
Hozhq encompasses the notions of connectedness, reciprocity, balance, and completeness that underpin con-textually oriented views of health and well-being (Stokols, 1991).
Although the terms of reference vary, this orientation is commonly held across Indian and
101 Native communities. The American Indian and Alaska Native experience may lead to the rediscovery of the fundamental aspects of psychological and social well-being and the mechanisms for their maintenance.
In this regard, as noted in Chapter 1, recent years have seen the development of sophisticated theoretical formulations of the relationships among spirituality, religion, and health. Most work in this area has focused on populations raised in Judeo-Christian traditions and, consequently, measurement approaches generally remain contained within this cultural horizon (The Fetzer Institute & National Institute on Aging, 1999). American
Indian and Alaska Native populations, on the other hand, often participate in very different spiritual and religious traditions, which require expanded notions of spirituality and religious practice (Reichard, 1950; Gill, 1982; Hultkrantz, 1990; Vecsey, 1991
Beauvais, 1992; Harrod, 1995; Tafoya & Roeder, 1995; Csordas, 1999). Especially notable here are the importance in many Native traditions of private religious and spiritual practice, an emphasis on individual vision and revelation, ritual action in a world inhabited by multiple spiritual entities, and complex ceremonies that are explicitly oriented to healing. Moreover, many American Indian and Alaska Native people participate in multiple traditions. Traditional tribal and pan-Indian beliefs and practices continue to be influential, especially in help-seeking (Kim & Kwok, 1998; Csordas,
1999; Buchwald et al., 2000; Gurley et al., 2001). Christian religions are also quite important in many Indian communities (Spangler et al., 1997). There is mounting evidence that many Indian people do not see Christianity and traditional practices as
102 incompatible (Csordas, 1999). This dynamic is probably most evident in the Native
American Church (NAC), where Christian and Native beliefs coexist (Aberle, 1966;
Pascarosa et al., 1976; Vecsey, 1991).
More explicit attention to the connections between spirituality and mental health in
Native communities is especially warranted given the nature and type of problems described previously.
Conclusions
As evidenced through history and current socioeconomic realities, American Indian and
Alaska Native nations have withstood the consequences of colonialism and of subsequent subjugation by the U.S. Government. Many members of this minority population are regaining control of their lives and rebuilding the health of their communities.
(1) Although relatively little evidence is available, the existing data suggest that
American Indian and Alaska Native youth and adults suffer a disproportionate burden of mental health problems compared with other Americans. Because of the unique and painful history of this minority group, many of its members are quite vulnerable. Given the high rates of suicide documented among some segments of this population, they are likely to experience increased need for mental health care as compared with white
Americans. Yet, in sharp contrast to other minority groups and the general population, there is a lack of epidemiology and surveillance. This information is needed to
103 understand the nature, extent, and sources of burden to mental health, as well as concomitant disparities. This is true across the developmental lifespan.
(2) Those who are homeless, incarcerated, and victims of trauma are particularly likely to need mental health care. Indian and Native people are overrepresented in these vulnerable groups. It is not known whether they receive mental health care within the institutions intended to serve them, but there appears to be considerable unmet need. Research is needed to understand the paths by which American Indians and Alaska Natives reach these points. Just as important, methods for detecting and managing their mental health are needed in related institutional settings through culturally appropriate ways that both ameliorate their present burden and protect them from the future consequences of adversity.
(3) There is significant comorbidity in regard to mental and substance abuse disorders, notably alcoholism, among both Native youth and adults. There is some indication that disorders occurring together are unlikely to be addressed by most mental health or substance abuse treatment settings. This underscores an important unmet need. Neither philosophies of treatment nor funding streams should preclude the timely and culturally appropriate treatment of such comorbidities, which otherwise threaten successful, lasting intervention.
104 (4) Little is known about either the use of mental health services by American Indians and Alaska Natives, or whether those who need treatment actually obtain it. However, the available research has important implications. First, practical considerations, such as availability of culturally sensitive providers and accessibility of services through insurance or geographic location, are extremely important for this ethnic group. Second, services for those in greatest need of care may best be provided within targeted settings, such as those serving the homeless, incarcerated, or alcohol dependent. Medical services that provide care for victims of trauma or older primary care patients also hold promise for meeting the needs of a significant portion of this population.
(5) Major changes in the financing and organization of mental health care are underway in American Indian and Alaska Native communities as a con-sequence of relatively recent policies regarding self-determination. There is limited understanding of these changes, their implications for resources, the resulting continuum of care, or the quality of services. Thus, it is imperative that organizational and financing changes be closely examined with an eye toward the best interests of Native people. It would be a sad legacy to conclude 20 years from now that the assimilationist pressures that proved so devastating in the past have been unwittingly repeated.
(6) The knowledge base underpinning treatment guidelines for mental health care have been built with little specific analysis of their benefit to ethnic minority groups. The evidence behind them is an extrapolation from largely majority clinical populations. This
105 is in spite of the fact that cultural forces are known to be at work in virtually every aspect of psychopathology, from risk to onset, presentation, assessment, treatment response, and relative burden. Moreover, the efficacy of treatment alternatives that may be especially relevant to this population has not yet been examined. Accordingly, clinical research needs to be undertaken to shed light on the applicability and outcomes of treatment recommendations for American Indians and Alaska Natives.
(7) Though long-suppressed by social and political forces, traditional healing practices and spirituality are strongly evident in the lives of American Indians and Alaska Natives.
They usually complement, rather than compete with, medical care. The challenge is to find ways to support and strengthen their respective contributions to the health and well- being of those in need. How well this is accomplished depends on advances in the science by which healing practices and spirituality are conceptualized and examined.
(8) Despite the mental health problems that plague Indian and Native people, the majority, though at risk, are free of mental illness. Thus, prevention should remain a high priority. Native voices are clear and unequivocal in this regard; preventive and promotive approaches strike a resonant chord in the hearts of these individuals and their communities. Abundant evidence attests to the creativity of intervention strategies mounted in an attempt to ameliorate situations of develop-mental risk for mental health problems among American Indians and Alaska Natives. Unfortunately, the current limits of science, notably the conceptualization and measurement of both the culturally defined
106 and relevant points of intervention as well as outcomes, impede the evaluation of these strategies. Here the challenge is to understand how preventive interventions developed in other populations work for the American Indian and Alaska Native population in order to determine what adaptations must be made to improve their cultural fit and effectiveness.
Conversely, the country as a whole has a great deal to gain by attending to advances in prevention among American Indians and Alaska Natives, for the lessons learned in these instances may have broader application to all Americans.
(9) Lastly, the individual and collective strengths of Native communities warrant closer, systematic attention. Interventions are needed to promote the strengths, resiliencies, and other psychosocial resources that characterize full, productive, meaningful lives and contribute to their maintenance. New perspectives need to be explored, bending our scientific tools to the task.
American Indian and Alaska Native people speak about a journey as beginning with its initial steps. With respect to mental health, this journey already has begun. Some paths have been well traveled and feel familiar; some paths are new and intriguing; some paths have yet to be marked. It is clear that the Nation can serve as a guide for hastening this journey along certain paths. It is equally clear that the Nation would also do well to watch carefully and follow Native people along the paths that they have emblazoned.
Culture and Religion
107 Residents may believe that the reason they are sick is because they are being punished by the higher power they worship. Many may even tell you "It's God's will" or "It's written in my life plan." As a matter of fact, the responses psychologists tell caregivers not to make in response to the grief or shock residents experience when dealing with a mental or physical illnesses are:
"You just need some perspective."
"Just accept things the way they are."
"There is nothing you can do."
There is always a silver lining."
"It is God's will."
"It is meant to be."
"Maybe this door has shut so another can open."
"This is just the way things are."
"It is time you got on with your life…whatever you have left."
"Buck up."
"This happens to other people. You're not the only one, you know."
"Accept your destiny."
Cultural and religious beliefs clearly shape a resident's beliefs about their health and their health care. The resident's beliefs about what caused their illness or what makes sense when they ask "Why me?" will be hard to answer because their understanding of the
108 biological basis of a disease will be difficult for them to understand. They tend to look
outside the medical realm for answers to these questions.
This is where religion and beliefs about how their god heals gives them answers or rituals
to engage in as a way to help with the healing. An example of this would be snake
handling.
The following information from the Church Education Resource Ministries (CERM) is
most informative and welcomes readers to its website as a way of explaining why this
belief is one of the "signs and wonders" some individuals believe in. It is a prime
example of how some resident's may believe in rituals rather than medicine to heal them.
John Wolf gives some real insight into snake handling which is practiced in parts of
Canada, Alabama, Indiana, South Carolina, Tennessee, West Virginia, Kentucky, and
North Carolina.
Snake Handlers I first became fascinated with snake handlers after I watched the X-files episode Signs
and Wonders. I did not know at the time if such practices existed and if this X-files episode was hyper-exaggerated or fake. So from then on I did a bit of research on snake handling and did discover that the X-files episode was not as unrealistic as I expected.
Some people think that everything produced by Hollywood is exaggerated or unreal, but that simply is not true. Snake handlers do exist and are as vivid and real as the snake handling Church of God with Signs and Wonders congregation that I saw on the X-files
109 episode. Unfortunately recent attempts to locate the website or phone number of such a church have failed, so unfortunately I won't be able to provide any photo or videos of such practices in this article.
Founder: Although others prominently figure into the history of this religious movement it was George Went Hensley who is commonly considered the "[father] of contemporary
Snake handling" (Burton 1993, 7).
Date of Birth: Born around 1880 [No specific date exists]-died July 25, 1955 [from a snakebite] (Kimborough 1995, 133).
Birth Place: Hills of Tennessee (Kimborough 1995, 133).
Year Founded: No exact date exists; Hensley is thought to have taken up the practice in
1908. (Burton 1993, 34).
History: Snake handlers are sometimes known as the Church of God with Sign and following. Under this term you can find "Pentecostalism practices and philosophies. The
Snake handling practice was born out of the Pentecostal-Holiness movement, which birthed out of the first two decades of the twentieth century.
George Hensley is known to have been the originator of the Snake Handling practice in the state of Tennessee (Melton 1996, 636). During one of his sermons on Mark 16, some men in the audience dropped a box of rattlesnakes in front of him. Hensley then picked up the snakes and was able to preach the entire time holding them. By 1914 this practice had spread throughout the Church of God . But Snake Handlers only made up a very small minority of the Church of God . By 1928, snake handling became the activity of
110 only a few small churches located in the Appalachian Mountains. Snake Handlers located in North Carolina, Kentucky, Tennessee, and Virginia all trace their heritage to George
Hensley. However the followers in Alabama, Georgia, South Carolina and other regions have a different origin.
Cult or Sect: Church Education Resource Ministries cannot completely conclude that the
Snake handling practice is cultic. For if a Snake Handler believes in the Lord Jesus Christ and trusts in Him for his or her salvation, then as the Bible says nothing can separate him or her from their eternal salvation (Rom 8:38-39).
But there is much solid evidence to conclude that Snake Handlers very badly misinterpret the scriptures and are not following God in their practices. But this alone does not make such snake handlers "unsaved" or "unchristian."
Size of group: An exact number of snake handler members is not known. But estimates range between 1,000 to 2,000 members of this practice (Burton 1993, 165). Snake handlers can be found as far south as Florida, as far west as Ohio, and as far north as
West Virginia (Melton 1996, 636).
Beliefs of the group: The central tenets of snake handlers revolve around a strict literal interpretation of the Bible (Burton 1993, 17). The ritual of snake handling then must, necessarily, come from a direct order from the Bible. There are three main passages that mandate the practice:
111 Mark 16:17-18: "And these signs shall follow them that believe; In my name shall they cast out devils; they shall speak with new tongues; They shall take up serpents; and if they drink any deadly thing, it shall not hurt them; they shall lay hands on the sick, and they shall recover" (Kimborough 1995, 14).
Mark 16:19-20: "So then after the Lord has spoken unto them [Jesus' disciples], he was received up into heaven, and set on the right hand of God. And they went forth, and preached everywhere, the Lord working with them, and confirming the word with signs following" (Burton 1993, 18).
Luke 10:19: "Behold, I give unto you the power to tread on serpents and scorpions, and over the power of the enemy: and nothing by any means shall hurt you" (Kimborough 1995, 14).
For sign followers to receive the power of the Holy Ghost (described above) it "takes repentance, remission of sins, and a godly life." Only after these three steps will the Holy
Ghost enable the snake handlers to follow the signs. The signs themselves include
"speaking in tongues, casting out of demons, handling serpents, drinking deadly things,
[and] healing the sick" (Burton 1993, 17-18). Some members will also anoint themselves with oil [as part of healing], "[hold] fire" and "[stick their] fingers into live electrical sockets" while engulfed in the power of the spirit (Covington 1995, 24-26).
Snake handler groups tend to be very legalistic. They believe that there should be a very strict moral code. Dress for example must be very plain, and jewelry is kept to a minimum. Many of these snake handlers use 1 Peter 1:18 as the authoritative passage behind this philosophy.
112 1 Peter, Chapter 1, Verse 18, New International Version
For you know that it was not with perishable things such as silver or gold that you were redeemed from the empty way of life handed down to you from your forefathers,
Looking at the CONTEXT of the passage, the passage does not forbid wearing jewelry.
The passage is referring to the doctrine of Sanctification and being separated from sin.
Peter states in verses 18-19 that it is not silver or gold that saves you, but salvation comes through the Lord Jesus Christ as mentioned in verse 19. Using this verse and having it say that the Bible forbids wearing jewelry is really ripping the verse right out of the context and the intended meaning of the verse.
Snake handlers are very big on dependence on the Lord’s ability to heal them. They believe in it so much that they do not believe in receiving medical treatments or medications. Those that visit doctors or receive medications are considered to be lacking in faith and are usually isolated from the church or group. While it is possible that God can heal instantly and without the help of a doctor or medication, it is rare that He does heal in these ways in the Church age. The Spiritual sign gift of healing ceased and is no longer practiced today. For more on this subject refer to CERM’s article on the sign gifts.
Another practice unique to sign followers is that of the "Holy Kiss." When members meet they give each other a kiss on the lips. This is usually done only to same sex members of the church. Different groups have different reasons for the practice. Some churches cite
Romans 16:16 "salute another with a Holy Kiss" other use 2 Corinthians 13:12-13 "Greet one another with a Holy Kiss" (Kimborough 1995, 33).
113 Sign followers, like Pentecostals, believe in the three stages, "salvation, sanctification and the baptism of the Holy Ghost." The steps occur when one realizes first "salvation from sin," then sanctification in the form "instantaneous...eradication of one's sinful nature," and finally the baptism of the Holy Ghost as manifest in the nine spiritual gifts (Burton
1993, 6-7). The nine spiritual gifts are specified in 1 Corinthians 12:8-10:
"For to one is given by the Spirit the word of wisdom; to another the word of knowledge by the same Spirit; To another faith by the same Spirit; To another the gifts of healing by the same Spirit; To another the working of miracles; another prophesy; to another discerning of spirits; to another divers kinds of tongues; to another the interpretation of tongues" (Burton 1993, 173).
Sign followers and Pentecostals tend to diverge in the "interpretations of other signs, which include the taking up of serpents" (Burton 1993, 7). Within the sign-following community there also exists a minor schism between two interpretations of the Holy
Trinity. Incidentally, mainstream Pentecostals and Holiness denominations argue over this topic as well. The first group is referred to as Jesus' Name or Unitarians. They feel that the Holy Trinity (the Father, Son, and Holy Spirit) are all one in the same. They are merely names reflecting the "diverse features of Christ's person." The Jesus' Name people cite Acts 2:38 as their proof: "Then Peter said unto them, Repent, and he baptized everyone of you in the name of Jesus Christ for the remission of sins and ye shall receive the gift of the Holy Ghost" (Kimborough 1995, 31).
The Trinitarians, however, cite biblical passages to support their claim that the three parts of the Holy Trinity are separate entities. They quote Luke 3:16 as their definitive proof:
114 "For God so loved the world that he gave his only begotten son, that whosoever believeth in him shall not perish but have everlasting life" (Kimborough 1995, 32). This difference of opinion is a rather small disagreement because of the relative autonomy of each individual church. In fact, this argument largely boils down to one of theological semantics since the effect that it has on actual worship is nonexistent.
Issues with Snake handlers
Snake handlers have taken Mark 16 and other various passages out of context. Few if any take them seriously, and snake handling is in question in both religious and secular circles. For example I made some attempts to locate a Snake Handler Church but my attempts all but failed.
Snake Handler Churches
Alabama
* Rock House Holiness Church on Sand Mountain in the rural northeast
Alberta , Canada
* True Holiness Believers Gathering, Lethbridge
* Holiness Fire Church Of Lord Jesus With Signs Following, Edmonton
British Columbia , Canada
* The Right Hand Of Jesus With Signs Following Church , Kamloops ,
* Small Believers Of Light Church With Signs Following, Revelstoke
Georgia
115 * The Jesus Name Believers Holiness Church , Canton
* Holiness Church of God in Jesus' Name, Kingston
* Holiness Church Of Lord Jesus, Roopville
Indiana
* Hiway Holiness Church of God, Fort Wayne
Kentucky
* Crockett Church , Fields
* East London Holiness Church , London
Michigan
* Apostolic Church, Warren
Ohio
* Full Gospel Jesus Church, Cleveland
* Full Gospel Jesus Church, Columbus
South Carolina
* Holiness Church of God in Jesus Name, Greenville
Tennessee
* Holiness Church of God in Jesus Name, Carson Springs
* House of Prayer in Jesus Name, Morristown
West Virginia
116 * Church Of The Lord Jesus With Signs Following, Jolo
* Full Gospel Jesus Church, Micco
* Full Gospel Jesus Church, Kistler
The Snake handler churches that are out there, must not have websites and hide their presence from the phone book. So those that know of them can only tell others that they know about them. Snake handler churches must not want the general public to find their churches. Snake Handling authenticity is in question. Their Biblical interpretation of the scriptures is from poorly educated minds that do not understand the art and science of
Biblical Interpretation or Hermeneutics. It also overlooks Ecc 10:11 which says.
Ecclesiastes, Chapter 10, Verse 11, King James Version
Surely the serpent will bite without enchantment; and a babbler is no better.
Ecclesiastes, Chapter 10, Verse 11, New King James Version
A serpent may bite when it is not charmed; The babbler is no different.
Perhaps this verse is a strong argumentation against both snake handling and tongues.
Snake handlers have also found themselves accused of "misappropriating" God’s power or rather that handling snakes is beyond the purview of mortal men (Burton 1993, 69).
The biggest challenge that snake handlers have had to face has been the law. Perhaps this is yet the major reason or a major reason why it was so difficult for me to find snake handler churches. Perhaps most of these churches are in hiding and do not want to be discovered. Alabama and Georgia have ruled Snake handling to be a felony charge. If someone died in one of these two states as a result of a snake handler church than capital
117 punishment would be the response. Unfortunately Alabama and Georgia at a later date
would repeal their laws (Burton 1993, 81). The government is at a loss on controlling the
snake handlers. Even in states and counties where the practice is banned, nothing can stop
the snake handlers from worshipping in their own homes. Such illegal activities are hard
to trace, and this all the more makes completely banning the practice of snake handling
impossible. Very few Christians are convinced that Snake handling is Biblical, and even
heretical Christian groups would agree. While Snake handlers themselves may be saved if
they are truly born again and regenerate, the practice of snake handling (although not a
cultic activity) is very unbiblical and certainly not a practice that the Lord Jesus wants his
followers to engage in. God created the animals and he created them to live in the wild,
and he created man to live elsewhere. Snakes belong in the wild and do not belong in the
church.
While I cannot stop snake handling, I hope that this article convicts and convinces
anyone that practices it of the Biblical truth. I challenge the snake handlers to read the
Bible and read it in the Context, rather than ripping isolated passages like Mark 16 out of
the context. Mark 16 was addressed to the disciples and was not addressed to the church
age. The sign gifts were given only to the 1st century church, and ceased at the closing of the canon of scripture.
Links to Snake Handling Web Sites
They Shall Take Up Serpents This article by Ted Olsen focuses on the early history and the role of George W. Hensley in the beginning of the movement. The article appeared in Christianity Today in Spring, 1998.
118 http://www.christianitytoday.com/ch/58h/58h025.html They Shall Take Up Serpents Transcript and audio in RealTime of a November 30, 1992 segment from National Public Radio's All Things Considered, David Isay, Producer. Time: 22 minutes. http://www.soundports.org/serpents.html Religious Snake Handling A small web page with useful information on Snake Handling and the Law. http://www.members.tripod.com/Yeltsin/index.html Snakes, Miracles and Biblical Authority" Terry Mattingly, who writes a weekly religion column for the Scripps Howard News Service, devotes this column to a friendship between Bill Leonard, Dean of the Divinity School at Wake Forest University and Brother Arnold Saylor a celebrated snake handler who died a natural causes at the age of 91. Taking Up Serpents Article appearing in the Augusta Chronicle about a 23-year-old preacher who was bitten by a timber and nearly didn't live to talk about it. http://augustachronicle.com/headlines/ 062996/062996serpent.html Ontario Consultants on Religious Tolerance (site for the discussion of Mark 16) The Ontario Consultants give an informative discussion of the biblical veracity of snake handling through a look into Mark 16. http://www.religioustolerance.org/mark_16.htm Ontario Consultants on Religious Tolerance (site for the discussion of faith healing) In this section of the web page the Ontario Consultants look into the practice of faith healing. The site mentions snake handlers prominently in their discussion. http://www.religioustolerance.org/medical.htm Bibliography Birckhead, Jim. 1997. "Snake Handlers: Critical Reflections" in Stephen D. Glazier, (ed). Anthropology of Religion: A Handbook. Westport , CT : Praeger. pp. 19-84. This rather lengthy essay is substantially a methodological statement about how the author conducted ethnographic research on snake handlers over many years. It also contains a brief literature review and a substantial bibliography.. Burton, Thomas. 1993. Serpent Handling Believers. Knoxville : University of Tennessee Press.
119 This book is an excellent source on snake handling. Burton gives a detailed description and study of the practice as well as a thorough discussion of the controversies surounding snake handling. Covington, Dennis. 1995. Salvation on Sand Mountain : Snake Handling and Religion in Southern Appalachia . New York : Penguin Books. Written by a journalist about his own experience with the Church of Jesus with Signs Following located in Scottsboro , Alabama . Covington covers in great detail the attempted murder trial of the Church's pastor Glen Summerford. Hood, Ralph W. Jr. 1998. "When the Spirit Maims and Kills: Social Psychological Considerations for the History of Serpent Handling Sects and the Narrative of Handlers," International Journal for the Psychology of Religion. 8(2), 71-96. Hood, Ralph W. Jr., W. Paul Williamson, and Ronald J. Morris. 2000. "Changing Views of Serpent Handling: A Quasi-Experimental Study," Journal for the Scientific Study of Religion. 39(3), 287-296. Kimborough, David L. 1995. Taking up the Serpents: Snake Handling Believers of Eastern Kentucky. Chapel Hill: University of North Carolina Press. Kimborough's major focus is on the history of the movement. He also offers an interesting study of the effects of the practice on society and society's effect on the practice. LaBarre, Weston. 1969. They Take Up Serpents. New York : Schocken Books. LaBarre, an anthropologist, focuses primarily on the psychological motivations and symbolic meaning of the snake handling ritual. While considered by some to be a classic statement about snake handlers, most contemporary scholars have serious reservations about LaBarre's methodology and the presuppositions he brought to his investigation. Melton, L. Gordon. 1996. " Church of God with Signs Following" in Encyclopedia of American Religions, Fifth Edition. Washington , D.C. : Gale Research Inc. p. 636. A brief but informative history of the Church of God with Signs Following. See also his comments on "Snake Handling" (pp. 83-84). Two short essays that offer excellent background to start a more thorough study of the phenomenon. See also Poloma, Margaret M. 1998. "Routinization and Reality: Reflections on Serpents and the Spirit," International Journal for the Psychology of Religion. 8(2), 101-105.
120 Williamson, W. Paul. 1998. "Response to a Research Challenge," International Journal for the Psychology of Religion. 8(2), 97-100. Video Bibliography They Shall Take up the Serpents. 1973. John E. Schrader and Thomas G. Burton, Producers. Johnson City : Eastern Tennessee State University . This is Professor Burton's first video on snake handlers. In just 15 minutes, it offers a good overview of the beliefs that prompt snake handlers to worship as they do. The Jolo Serpent-Handlers. 1977. Karen Kramer, Producer and Director. New York : Image Conversions Systems. Kramer's video discusses rather thoroughly the snake handlers of Jolo , West Virginia . The video shows a snake hunt and an attempt to heal with prayers. Most interesting are interviews with the snake handlers themselves as to why they participate in this form of worship. Carson Springs: A Decade Later. 1983. Thomas G. Burton and Thomas F. Headley, Producers. Johnson City : Eastern Tennessee State University . Burton and Headley focus on the aftermath of the intense scrutiny on the congregation ten years earlier. Two extensive interviews with the Pastor Alfred Ball and Liston Pack (whose brother's death helped create all the attention in the early 1970's). Holy Ghost People. 1984. Directed by Peter Adair, Director and Blair Boyd, Producer for Thistle Films. Comtemporary Films [production company]: CRM/McGraw-Hill Films [distributor]. This film is an excellent in-depth (50 minutes) look at snake handling's history. Extensive footage of interviews with believers and of worship services. Church vs. State: Following the Signs; A Way of Conflict. 1986. Thomas G. Burton and Thomas F. Headley, Producers. Johnson City : Eastern Tennessee State University . Burton and Headley discuss briefly the history of the practice. The bulk of the video revolves around a detailed discussion of the legal battles and issues surrounding snake handling.
121 Religious Traditions
Religion defines the worlds of many cultures. During illness, religion often becomes more important in ones life and is the way a resident accepts and understands their illness. In some instances, traditions and rituals are the only way to bring about healing
122 and any hope of wellness again. Resident's religious beliefs should be respected and incorporated whenever possible in their daily lives once they move into a long term care facility.
Although levels of income is the most powerful ingredient that dictates health care and health status in the U.S., racial and ethnic factors put people in lower socioeconomic classes at risk. Being a member of a minority racial group is a big risk factor for lower quality care. Elderly blacks, Hispanics, American Indians and Asians are seen less often by specialists, receive fewer preventative services and lower quality hospital care. Health
2010 can be studied to see that one of the government's goals is to eliminate racial and ethnic disparities. Because thee groups have received very little conventional or a lower quality of health care for decades, large numbers have developed traditions which arose as a way to keep illness away from ones home.
An example of a tradition: Bottle Trees
Elderly black residents from Louisiana, Tennessee, Mississippi, and Alabama developed bottle trees. Different religious sects have followed suit and have kept the old tradition alive. You may be asked to accommodate some of these traditions in one of your resident's rooms so the following may be of interest to you.
Felder Rushing has a website with history as well as directions and materials for making bottle trees. He also has links to other websites with pictures of his and other's gardens showing off some works of art in gardens to include bottle trees. In the southern states
123 where Bottle Trees are still used, the owners of the trees, who have them, give credit to
their ancestors who came to the U.S. from South Africa so your residents may believe
this was their origin. Felder Rushing has a different view which may be of great interest
to your residents. He gives specific advice on construction, should you find you need his
expertise in building a tree for your nursing home residents who hold the belief that bottle
trees are able to protect them by capturing evil spirits: www.felderrushing.net
" I have done MUCH research, and have distilled it down to this (leaving out many
colorful extra references)."
Poor Man’s Stained Glass
"For years I subscribed to the common thread of lore that dates the origin of bottle trees to the Congo area of Africa in the 9th Century A.D. But after extensive research, I find that bottle trees and their lore go back much farther in time, and originate farther north.
And that the superstitions surrounding them were embraced by most ancient cultures, including European.
124 Although glass was made deliberately as early as 3500 B.C. in northern Africa, hollow glass bottles began appearing around 1600 B.C. in Egypt and Mesopotamia. Clear glass was invented in Alexandria around 100 A.D.
Soon around then, tales began to circulate that spirits could live in bottles - probably from when people heard sounds caused by wind blowing over bottle openings. This led to the belief in "bottle imps" and genies (from the Arabic word djinn) that could be captured in bottles (remember Aladdin and his magic lamp? This story originated as an Arabian folk tale dating back thousands of years, even before clear glass was invented). Somewhere in them, people started using glass to capture or repel bad spirits. The idea was, roaming night spirits would be lured into and trapped in bottles placed around entryways, and morning light would destroy them.
125 Incidentally, you will run into folks who refuse to put up bottle trees because of the connection to pagan superstitions. HOWEVER, before people learned about cold germs and allergies, early Greeks and Romans thought that sneezes were bad spirits being expelled. When someone sneezed, nearby people would snap their fingers to keep the spirit out of their own bodies, and say "Jupiter preserve you" to keep the spirit from reentering the sneezer. Because superstitions were so hard to stop, and pagan festivals were so ingrained, an early pope in the 3rd century A.D. (the same one who decided to
"go with the flow" and put Christmas on the pagan winter solstice festivities, and Easter on the pagan spring fertility festivals) changed "Jupiter preserve you" to "God bless you."
All this is well-established, not lore. So, like it or not, or even if they aren’t aware of this historical fact, folks who say “God bless you” (or similar salutations) are performing an ancient pagan superstitious ritual. And they get indignant when this is pointed out - yet
126 they continue to assume that those of us who love colorful bottle trees are somehow involved in pagan practices! Sheesh.
Anyway, the bottle imp/bad spirit thing was carried down through sub-Saharan Africa and up into eastern Europe, and eventually imported into the Americas by African slaves
– and Germans, Irish, and other superstitious folk who among other things put hex symbols on barns and celebrated May Day and Halloween. Europeans brought "witch balls" (hollow balls with an opening in the bottom to capture witches) and "gazing balls" to repel witches.
Nowadays, bottle trees are mostly used as interesting garden ornaments that glisten in the sun, and the use of colorful glass garden art is on the upswing, as any visit to upscale garden shows (including the Chelsea Flower Show in London) will prove.
Bottle Trees are Concepts – Not Recipes
While I have seen incredible garden ornaments made from bottles and other forms of glass, there seems to be little or no difference between bottle trees. All are simple variations on the same theme: bottles on sticks. Bottle trees - often referred to as "poor man's stained glass" or "garden earrings"- can be made of dead trees or big limbs tied together (crape myrtles and cedars have the best natural forms), wooden posts with large nails, welded metal rods, or bottles simply stuck on the tines of an upended pitch fork or a small number of rebar rods stuck in the ground...
Most are festooned with bottles of many colors, but the blue bottles are considered "best" blue has LONG been associated with ghosts, spirits, and "haints" - there is even a blue paint used around windows and doors of cottages to repel spirits called "haint blue" -
127 really (see more notes below). But one of my favorites is a tree made of a blend of just green bottles and clear bottles - it looks great and sparkles in the sun without being a poke in the eye to fussy neighbors.
In some of my garden books I coined a Latin name for bottle trees - Silica transparencii
(for “clear glass), along with whimsical “cultivars” including 'Milk of Magnesia' blue, the mixed-color 'Kaleidoscope Stroke', and even a rare one called 'Texas Bluebonnet' (lower half is all green bottles, capped with blue bottles at the top).
There is much, much more to the story, but this should be enough to get your juices going."
Here is a short excerpt from Eudora Welty's short story Livvie:
"Out front was a clean dirt yard with every vestige of grass patiently uprooted and the ground scarred in deep whorls from the strike of Livvie's broom. Rose bushes with tiny blood-red roses blooming every month grew in threes on either side of the steps. On one side was a peach tree, on the other a pomegranate.
Then coming around up the path from the deep cut of the Natchez Trace below was a line of bare crape-myrtle trees with every branch of them ending in a colored bottle, green or blue.
There was no word that fell from Solomon's lips to say what they were for, but Livvie knew that there could be a spell put in trees, and she was familiar from the time she was born with the way bottle trees kept evil spirits from coming into the house - by luring them inside the colored bottles, where they cannot get out again.
128 Solomon had made the bottle trees with his own hands over the nine years, in labor amounting to about a tree a year, and without a sign that he had any uneasiness in his heart, for he took as much pride in his precautions against spirits coming in the house as he took in the house, and sometimes in the sun the bottle trees looked prettier than the house did..."
For more on the history and development of ornamental glass, here are some great links:
Wikiglass
Corning Museum of Glass - its complete reference
Chemistry of Glass
Glassonline history
Cobalt Blue- Favored for bottle trees, but named after German gnomes
"For some very interesting reasons, the color of choice for bottle trees has long been blue.
While most experts disagree on how or even if, when cultural biases are taken out of testing, colors affect humans psychologically, many references agree that blue is a universally relaxing, calming color.
Blue glass can be made from adding copper oxides to molten glass, but for over five thousand years the most widespread colorant has been cobalt, a shiny, gray, brittle metal found in copper and nickel ores. Ingots of cobalt glass have been recovered from Minoan shipwrecks dating from as long ago as 2700 BC, and a cobalt-blue Persian glass necklace has been dated to BC 2250. Cobalt glazes have been found in Egyptian tombs of that
129 period as well. And in 79 AD when Vesuvius blew itself to pieces, it buried cobalt glass
objects with their owners. The Tang Dynasty of China used cobalt coloring as early as
600 AD.
Incidentally, while cobalt blue is easy to photograph, and shows up well on monitors, it is
almost impossible to print on ordinary printers without serious color manipulations.
And get this: The name “cobalt” arises from the Greek by way of Medieval Germany,
from the Schneeberg Moutains in the Erzgebirge region of Saxony (Germany) which was
a silver mining area. The term “Kobald” (earliest records of the name is in 1335) applied
to gnomes (spirits) which were thought to cause trouble in mines. The problems were
actually due to cobalt interfering with the silver smelting and causing some respiratory
problems with the miners, but the name stuck.
. ...
Haint Blue
130 "Haint blue" is a vivid color commonly found on window shutters, doors, and porch ceilings all over the world, especially in Southeast United States, the Caribbean, and sub-
Saharan Africa. More concept than specific color, it ranges from light or "baby" blue to periwinkle to blue-green.
By the way, some references claim that because lime was a common ingredient in early paints, it would keep flies, wasps, and other insects from landing on the painted surfaces, which is one reason ceilings were painted with it. Modern paints, which don't contain lime, are probably no longer effective as insect repellents based on color alone.
And the word "haint" is not an African term; it is from the same root word as "haunt" - most likely from the German/French/Middle English "hanter" (c.1330), which meant to stalk, to make uneasy, to inhabit. The verb was first recorded 1590 in Shakespeare's A
Midsummer Night's Dream. The noun meaning "spirit that haunts a place, ghost" is first recorded 1843, originally in stereotypical African-American speech.
Whatever your color of choice for bottle trees, know that it is from a long and proud tradition of keeping bad things - including the Blues - away..."
Witch Ball in Felder's Garden
131 Thanks to Felder for the information.
Spirituality and End of Life Care
Spiritual Care
Illness is a major life event that can cause people to question themselves, their purpose, and their meaning in life. It disrupts their careers, their family life, and their ability to enjoy themselves; three aspects of life that Freud said were essential to a healthy mind.
Illness can cause people to suffer deeply. Victor Frankl noted when writing about concentration camp victims that survival itself might depend on seeking and finding meaning:
132 “Man is not destroyed by suffering; he is destroyed by suffering without
meaning.”
Palliative care has long recognized that, in addition to physical and psychological symptoms, patients with advanced illness will suffer existential distress as well.
Existential distress is probably the least understood source of suffering in patients with advanced disease, for it deals with questions regarding the meaning of life, the fear of death, and the realization that they will be separated from their loved ones. These issues take on greater importance in HIV/AIDS because of the stigma and judgment that still accompany people living with this disease. A number of surveys and studies demonstrate the importance of considering spirituality in the health care of patients and document the relationship between patients' religious and spiritual lives and their experiences of illness and disease. These findings are particularly relevant in the delivery of palliative care.
From the very early years of the modern hospice movement, spiritual aspects of health, illness, and suffering have been emphasized as core aspects of care. Several studies support the relevance of spirituality in the care of seriously ill patients. (Puchalski &
Sandoval, 2003)
A 1997 Gallup survey showed that people overwhelmingly want their spiritual needs addressed when they are close to death. In its preface, George H. Gallup, Jr., wrote, "The overarching message that emerges from this study is that the American people want to reclaim and reassert the spiritual dimensions in dying." Other studies have found spirituality to be an important factor in coping with pain, in dying, and in bereavement.
Patients with advanced cancer who found comfort from their spiritual beliefs were, for
133 example, more satisfied with their lives, were happier, and had diminished pain compared with those without spiritual beliefs. An American Pain Society survey found that prayer was the second most common method of pain management after oral pain medications, and the most common non-drug method of pain management. Quality of life instruments used in end of life care measures often include an existential domain which measures purpose, meaning in life, and capacity for self-transcendence. Three items were found to correlate with good quality of life for patients with advanced disease:
• If the patient's personal existence is meaningful
• If the patient finds fulfillment in achieving life goals
• If life to this point has been meaningful
In HIV, patients struggle with existential crises as do other patients with chronic illness.
However, the social stigma of the illness may affect how patients view their illness, particularly for those patients who are religious. In a study of patients with HIV, those who were spiritually active had less fear of death and less guilt about their illness. Fear of death was more likely among the 26% of religious patients in this study who felt their illness was a punishment from God. Fear of death diminished among patients who had regular spiritual practices or who stated that God was central to their lives (Puchalski &
Sandoval, 2003)
In a study of spirituality among the terminally ill, Reed asserted, "Spirituality is defined in terms of personal views and behaviors that express a sense of relatedness to a transcendent dimension or to something greater than self." Another, more clinical, definition is:
134 Spirituality is recognized as a factor that contributes to health in many persons. The
concept of spirituality is found in all cultures and societies. It is expressed in an
individual's search for ultimate meaning through participation in religion and/or belief
in God, family, naturalism, rationalism, humanism, and the arts. All of these factors
can influence how patients and health care professionals perceive health and illness
and how they interact with one another! How people find meaning and purpose in life
and in the midst of suffering varies. Whatever form spirituality takes, its active
practice can help patients cope with the uncertainty of their illness, instill hope, bring
comfort and support from others, and bring resolution to existential concerns,
particularly the fear of death. It is important that the palliative care team accepts and
honors all approaches to existential concerns. This requires open-mindedness, cultural
sensitivity, and a willingness to learn from the life experiences of others (Puchalski &
Sandoval, 2003).
For many, these existential questions are mainly expressed in a formal religion by belief in a deity, the theology of the religion, the concept of an afterlife, and the rituals and practices of the religion used to express those beliefs. Many religions have a rich tradition and experience in giving meaning to the cause of suffering and in restructuring suffering into a positive experience. Addressing the role of religion in medicine in the first decade of the last century, William Osler wrote:
Nothing in life is more wonderful than faith, the one great moving force which we
can neither weigh in the balance nor test in the crucible. Intangible as the ether,
ineluctable as gravitation, the radium of the moral and mental spheres,
135 mysterious, indefinable, known only by its effects, faith pours out an unfailing
stream of energy while abating nor jot nor tittle of its potency.16
Osler concluded that not only did faith have important effects on health outcomes but that practitioners should seek to encourage and incorporate faith as part of clinical care
(Puchalski & Sandoval, 2003).
By definition, palliative care focuses on aspects of treatment that are not intended to achieve cure. Much of medical training has to do with finding a cure or fixing a problem.
In chronic illness and end-of-life care, this may no longer be possible. The oft-quoted phrase "there is nothing more I can do for you" comes out of that medical "fixer" model.
In fact, there is a lot we can do for our patients, and it is also our obligation as physicians
"to continue to care for patients even when disease-specific therapy is no longer available or desired." This is where spiritual care becomes so critical. It allows us to care for our patients even when cure is not possible.
In dying, for example, healing or restoration of wholeness may be manifested by a transcendent set of meaningful experiences while very ill and a peaceful death. In chronic illness, healing may be experienced as the acceptance of limitations. A person may look to medical care to alleviate his or her suffering, and, when the medical system fails to do so, begin to look toward spirituality for meaning, purpose, and understanding. It is the combination of both good clinical-technical care and good spiritual care that can provide the best chance for healing at any stage of illness (Puchalski & Sandoval, 2003).
It is important to include a spiritual assessment or history as part of the overall clinical assessment of a patient. Doing so enables the provider to assess spiritual needs and
136 resources, mobilize appropriate spiritual care, and enhance overall caregiving. Spiritual
assessment has been included in coursework on spirituality and medicine and is
performed by many practicing clinicians in the U.S. The acronym FICA -- for faith and
belief, importance, community, and address in care -- can be helpful for structuring an
interview regarding a patient's spiritual views. Providers can obtain more information
about spiritual assessment and FICA from the George Washington Institute for
Spirituality and Health (GWish), 2300 K Street NW, Suite #303, Washington, D.C.
20037, (202) 994-0971; www.gwish.org. A compassionate spiritual assessment helps to integrate spiritual concerns into therapeutic plans. Once a spiritual assessment has been made, then the appropriate spiritual intervention should be offered. Appropriate referrals to chaplains and other pastoral care providers are as important to good healthcare practice as are referrals to other specialists. It is important that healthcare providers be aware of their own values, beliefs, and attitudes, particularly toward their own mortality. A spiritual perspective on care recognizes that the clinician-patient relationship is ultimately a relationship between two human beings. Confronting personal mortality enables a provider to better understand and empathize with what the patient is facing, to better handle the stress of working with seriously ill and dying people, and to form deeper and more meaningful connections with the patient (Puchalski & Sandoval, 2003).
It is the spiritual aspect of human nature that raises questions about ultimate meaning and purpose, questions for which medicine and science have no answers. These issues require a unique language in which symbolism, story, and ritual are often involved.. Some of these questions and concerns might be stated in the language of faith or religion. Here the
137 patient might invoke God, and in this instance statements of faith would be used to deal
with the questions. At other times, questions dealing with the purpose of one's life might
be more appropriately answered in existential terms.
The main goal of a chaplain is to support the patient and to be present for him or her
emotionally. This is what is called a ministry of presence, which is centered on a caring
acceptance, a nonjudgmental stance, and physical and emotional availability. Chaplains
are not necessarily clergy, although they can be, but all CPE-certified chaplains know
how to work with patients with different religious or spiritual beliefs. These chaplains can
also work with atheists and agnostics. More information about chaplains can be obtained
from the following organizations:
• National Association of Catholic Chaplains, 3501 South Lake Drive, PO Box
07473, Milwaukee, WI 53235-0900, www.nacc.org
• Association of Professional Chaplains, 1701 E. Woodfield Road, Suite 311,
Schaumburg, IL 60173, www.professionalchaplains.org
(Puchalski & Sandoval, 2003)
Religious and Cultural Rituals Every faith or cultural tradition is rich with practices and rituals that are of great support to the believer, particularly in moments of crisis. The most common religious ritual is prayer. Many patients have set times in the day when they pray and are helped by having this practice included in their care plans so that the ritual is facilitated. It is entirely appropriate (and should be encouraged) to invite caregivers who would like to pray with their patients to do so, if the patients agree to it. Prayers need not be formal. They can be
138 a single thought or a wish that the patient and caregiver have been talking about. It may be a simple blessing or simply the silent presence of the caregiver while the patient articulates the prayer. Along with prayer, the reading of texts sacred of the patient's spiritual tradition can be of great support. This too should be included in the care plans so that the patient has time set aside for this reading. When a patient is too infirm to read texts on his or her own, a caregiver can offer to read to the patient from the selected texts.
Both prayer and reading serve as effective methods of relaxation (Puchalski & Sandoval,
2003).
All care providers (doctors, nurses, chaplains, social workers, therapists, family, faith communities) can participate in the spiritual dimension of a patient's life. Each professional is trained to deal with spiritual issues in a different way. The interdisciplinary model of palliative care that includes spiritual support is intended to ensure that patients receive the best care and opportunity for healing possible in a compassionate, caring health care system.
Living Will (Directive to Physicians) A living will (also known as a "directive to physicians" or "advanced directive") is a legal document authorizing the removal of artificial life-support systems for an individual who has been diagnosed with brain death or whose condition has been deemed terminal and irreversible. The living will is directed to an individual's physician, and constitutes written evidence of the individual's intent not to be kept alive by artificial means. A living will may also specify that a patient elects to forego other life prolonging treatments, such as artificial hydration and nutrition via IV, antibiotics, and in, some cases, blood
139 transfusions. Exceptional care should be taken when explaining these options and their effects to a terminally ill patient, so that the living will precisely represents the patient's intent with respect to these life-prolonging treatment options. People living with HIV who are opposed to being placed on prolonged life support despite the occurrence of brain death or a terminal diagnosis are advised to execute a living will that clearly communicates their opposition. In the absence of a living will evidencing a clear intent, physicians can find themselves both ethically and legally bound to do everything they can to keep a person alive -- even if the person is clinically brain dead and being kept alive solely through technological life support measures. By the same token, many physicians, particularly those experienced in working with people with HIV, are familiar with and generally respectful of the intent expressed by those who choose to execute living wills.
It is a good idea for an individual's treating physician to be aware of the existence of a living will when one has been prepared. Bear in mind that some hospitals with particular religious affiliations may be reluctant to honor a patient's expressed wishes even if a living will has been prepared and presented to the medical staff. In some cases, particularly where there is no law or statute authorizing the creation of a living will, the religious institution that participates in setting hospital policy directs medical staff not to recognize living wills. Thus, people living with HIV who are strongly opposed to being placed on prolonged life support should consider where they receive their care, and whether the religious affiliation of their provider is likely to affect that provider's willingness or ability to honor the living will. Laws in this sensitive area vary widely from State to State, and, in many States, there is no statutory authority for living wills.
140 There have been, however, many important legal cases involving a person's right to be taken off artificial life support and those cases have generally favored honoring a person's desire to terminate life support when it can be proven that the desire was clearly expressed in advance. Still, it is advisable to work with someone familiar with the law in your particular state when preparing and executing a living will (Greenwald & Eshghi,
2003).
State-specific forms for living wills and for health care proxy (assigning power of attorney for health care) can be downloaded free from the web site of Partnership for
Caring. Contact Partnership for Caring on the web at www.partnershipforcaring.org/ or by phone at 1-800-989-9455. Five Wishes is a document that helps patients express how they want to be treated if they are seriously ill and unable to speak for themselves. Five
Wishes can be ordered for $5.00 from Aging With Dignity, P.O. Box 1661, Tallahassee,
FL 32302-166, www.agingwithdignity.org or 1-888-594-7437.
Durable Power of Attorney A person living with HIV may appoint someone else to manage her finances and to make economic decisions on her behalf by executing a durable power of attorney. As with the health care proxy, the person appointed in the power of attorney document is referred to as the "agent." The person making the appointment is referred to as the "principal." The power of attorney document can grant broad authority to the agent, allowing the agent to have broad access to and control over the principal's financial and legal matters. Or, the
141 authority granted can be limited and specific, such as allowing the agent to sell the principal's home and use the proceeds for a particular purpose designated by the principal. A power of attorney that is broadly given may be more useful for someone who anticipates a long period of hospitalization or incapacity and who needs an agent who can access bank accounts, pay bills, pick up checks and mail, and handle other daily financial matters as they arise. In either case, the agent has a legal responsibility, known as "the fiduciary duty," not to abuse the assets of the principal for her own personal benefit.The authority granted to the agent by the power of attorney document does not survive the principal's death. The authority under the power of attorney dies with the principal, and, assuming the principal has a valid will, power transfers to the executor (also known in some states as the "personal representative"), who then assumes responsibility (with judicial oversight) for dealing with financial matters, paying debts, and distributing assets in accordance with the will's provisions (Greenwald & Eshghi, 2003).
Declaration as to Remains The declaration as to remains is a document that, in essence, allows a person living with
HIV to plan her own funeral and decide what will happen with her body upon death. By clearly expressing choices and preferences regarding burial, cremation, funeral services, memorial services, and other arrangements, a person living with HIV can ensure that her wishes are carried out and can also avoid potential controversies between biological family members and life partners or close friends. Because it is a less familiar document to most people, as compared with a will or a health care proxy, it is a good idea for a person who executes a declaration as to remains to make the existence of the document known to the person or persons who are designated to carry out the wishes and plans
142 specified within it. Unfortunately, in some States, there is no statutory authority or law authorizing the creation of a declaration as to remains and, in others, the law states that a person's remains automatically become the possession of the person's "next of kin," a legally defined relationship that does not include one's life partner (except in the State of
Vermont) or close friends. This means that even with a carefully thought out and well- executed declaration as to remains, an individual may not be able to completely insure that her dying wishes regarding funeral and burial or cremation are honored (Greenwald
& Eshghi, 2003).
Death It is important to respect the patient's and family's cultural, religious, and spiritual beliefs throughout the course of care up to and including the time of death and beyond. Although
60% of people die in institutions in the U.S., most surveys show that most people prefer death in familiar surroundings. Every attempt should be made to allow the person to die where they feel most comfortable. Even in a clinical setting, being able to be with the person who is dying is very comforting to most family members. Every attempt should be made to remove unnecessary monitors such as pulse oximetry readers, intravenous lines, cardiac monitors, and even ventilators when possible; see guidelines above for removing ventilatory support(Alexander, Back, & Perrone, 2003).
Those in attendance may appreciate a pastoral care provider who can lead them in prayer, or they may want to sing and to wait for the 'spirit' to leave the room. Ritual cleansing, bathing with oils, or other cultural practices should be encouraged. Even after the family has gone and the body has been removed, it is advisable to leave a silk or plastic flower
143 on the bed to allow hospital workers the opportunity to say goodbye and to grieve this death before they must go on to the care of another patient. Creating a memorial section in the intensive care unit or a busy ward gives health care workers permission to gain closure, especially when they are in an area where there are multiple deaths.
Spirituality in Cancer Care The role of spirituality as a means of staying healthy is vital to many residents. While this is traditionally seen as a concern for a hospital chaplain or priest, it is increasingly important for health professionals to take an active role in the spiritual needs of their residents. The following is a study by the National Cancer Institute emphasizing the role of spirituality in the improvement of mental and physical well-being in adult cancer patients.
Overview
National surveys consistently support the idea that religion and spirituality are important to most individuals in the general population. More than 90% of adults express a belief in
God, and slightly more than 70% of individuals surveyed identified religion as one of the most important influences in their lives.[1] Yet even widely held beliefs, such as survival of the soul after death or a belief in miracles, vary substantially by gender, education, and ethnicity.[2]
Research indicates that both patients and family caregivers [3,4] commonly rely on spirituality and religion to help them deal with serious physical illnesses, expressing a desire to have specific spiritual and religious needs and concerns acknowledged or
144 addressed by medical staff; these needs, although widespread, may take different forms between and within cultural and religious traditions.[5-7]
A survey of hospital inpatients found that 77% of patients reported that physicians should take patients' spiritual needs into consideration, and 37% wanted physicians to address religious beliefs more frequently.[8] A large survey of cancer outpatients in New York
City found that a slight majority felt it was appropriate for a physician to inquire about their religious beliefs and spiritual needs, although only 1% reported that this had occurred. Those who reported that spiritual needs were not being met gave lower ratings to quality of care (P < .01) and reported lower satisfaction with care (P < .01).[7] A pilot study of 14 African American men with a history of prostate cancer found that most had discussed spirituality and religious beliefs with their physicians; they expressed a desire for their doctors and clergy to be in contact with each other.[9]
Sixty-one percent of 57 inpatients with advanced cancer receiving end-of-life care in a hospital supported by the Catholic archdiocese reported spiritual distress when interviewed by hospital chaplains. Intensity of spiritual distress correlated with self- reports of depression but not with physical pain or with perceived severity of illness.[10]
Another study [11] of advanced cancer patients (N = 230) in New England and Texas assessed their spiritual needs. Almost half (47%) reported that their spiritual needs were not being met by a religious community, and 72% reported that these needs were not supported by the medical system. When such support existed, it was positively related to improved quality of life. Furthermore, having spiritual issues addressed by the medical
145 care team had more impact on increasing the use of hospice and decreasing aggressive end-of-life measures than did pastoral counseling.[12]
This summary will review the following topics:
• How religion and spirituality can be usefully conceptualized within the medical
setting.
• The empirical evidence for the importance of religious and spiritual factors in
adjustment to illness in general and to cancer in particular, throughout the course
of illness and at the end of life, for both patients and family caregivers.[3]
• The range of assessment approaches that may be useful in a clinical environment.
• Various models for management and intervention.
• Resources for clinical care.
Paying attention to the religious or spiritual beliefs of seriously ill patients has a long tradition within inpatient medical environments. Addressing such issues has been viewed as the domain of hospital chaplains or a patient’s own religious leader. In this context, systematic assessment has usually been limited to identifying a patient’s religious preference; responsibility for management of apparent spiritual distress has been focused on referring patients to the chaplain service.[13-15] Although health care providers may address such concerns themselves, they are generally very ambivalent about doing so,
[16] and there has been relatively little systematic investigation addressing the physician’s role. These issues, however, are being increasingly addressed in medical training.[17] Acknowledging the role of all health care professionals in spirituality, a
146 multidisciplinary group from one cancer center developed a four-stage model that allows health care professionals to deliver spiritual care consistent with their knowledge, skills, and actions at one of four skill levels.[18]
Interest in and recognition of the function of religious and spiritual coping in adjustment to serious illness, including cancer, has been growing.[19-23] New ways to assess and address religious and spiritual concerns as part of overall quality of life are being developed and tested. Limited data support the possibility that spiritual coping is one of the most powerful means by which patients draw on their own resources to deal with a serious illness such as cancer; however, patients and their family-member caregivers may be reluctant to raise religious and spiritual concerns with their professional health care providers.[24-26] Increased spiritual well-being in a seriously ill population may be linked with lower anxiety about death,[27] but greater religious involvement may also be linked to an increased likelihood of desire for extreme measures at the end of life.[28]
Given the importance of religion and spirituality to patients, integrating systematic assessment of such needs into medical care, including outpatient care, is crucial. The development of better assessment tools will make it easier to discern which aspects of religious and spiritual coping may be important in a particular patient's adjustment to illness.
Of equal importance is the consideration of how and when to address religion and spirituality with patients and the best ways to do so in different medical environments.
[29-31] Although addressing spiritual concerns is often considered an end-of-life issue, such concerns may arise at any time after diagnosis.[24] Acknowledging the importance
147 of these concerns and addressing them, even briefly, at diagnosis may facilitate better adjustment throughout the course of treatment and create a context for richer dialogue later in the illness. One study of 118 patients seen in follow-up by one of four oncologists suggests that a semistructured inquiry into spiritual concerns related to coping with cancer is well accepted by patients and oncologists and is associated with positive perceptions of care and well-being.[32]
In this summary, unless otherwise stated, evidence and practice issues as they relate to adults are discussed. The evidence and application to practice related to children may differ significantly from information related to adults. When specific information about the care of children is available, it is summarized under its own heading.
References 1. Gallup GH Jr: Religion In America 1996: Will the Vitality of the Church Be the Surprise of the 21st Century? Princeton, NJ: Princeton Religion Research Center, 1996.
2. Taylor H: The Religious and Other Beliefs of Americans 2003. The Harris Poll #11, February 26, 2003. Rochester, NY: Harris Interactive Inc., 2003. Available online . Last accessed June 14, 2012.
3. Kim Y, Wellisch DK, Spillers RL, et al.: Psychological distress of female cancer caregivers: effects of type of cancer and caregivers' spirituality. Support Care Cancer 15 (12): 1367-74, 2007. [PUBMED Abstract]
4. Whitford HS, Olver IN, Peterson MJ: Spirituality as a core domain in the assessment of quality of life in oncology. Psychooncology 17 (11): 1121-8, 2008. [PUBMED Abstract]
5. Taleghani F, Yekta ZP, Nasrabadi AN: Coping with breast cancer in newly diagnosed Iranian women. J Adv Nurs 54 (3): 265-72; discussion 272-3, 2006. [PUBMED Abstract]
6. Blocker DE, Romocki LS, Thomas KB, et al.: Knowledge, beliefs and barriers associated with prostate cancer prevention and screening behaviors among
148 African-American men. J Natl Med Assoc 98 (8): 1286-95, 2006. [PUBMED Abstract]
7. Astrow AB, Wexler A, Texeira K, et al.: Is failure to meet spiritual needs associated with cancer patients' perceptions of quality of care and their satisfaction with care? J Clin Oncol 25 (36): 5753-7, 2007. [PUBMED Abstract]
8. King DE, Bushwick B: Beliefs and attitudes of hospital inpatients about faith healing and prayer. J Fam Pract 39 (4): 349-52, 1994. [PUBMED Abstract]
9. Bowie J, Sydnor KD, Granot M: Spirituality and care of prostate cancer patients: a pilot study. J Natl Med Assoc 95 (10): 951-4, 2003. [PUBMED Abstract]
10. Mako C, Galek K, Poppito SR: Spiritual pain among patients with advanced cancer in palliative care. J Palliat Med 9 (5): 1106-13, 2006. [PUBMED Abstract]
11. Balboni TA, Vanderwerker LC, Block SD, et al.: Religiousness and spiritual support among advanced cancer patients and associations with end-of-life treatment preferences and quality of life. J Clin Oncol 25 (5): 555-60, 2007. [PUBMED Abstract]
12. Balboni TA, Paulk ME, Balboni MJ, et al.: Provision of spiritual care to patients with advanced cancer: associations with medical care and quality of life near death. J Clin Oncol 28 (3): 445-52, 2010. [PUBMED Abstract]
13. Zabora J, Blanchard CG, Smith ED, et al.: Prevalence of psychological distress among cancer patients across the disease continuum. Journal of Psychosocial Oncology 15 (2): 73-87, 1997.
14. Fitchett G, Meyer PM, Burton LA: Spiritual care in the hospital: who requests it? Who needs it? J Pastoral Care 54 (2): 173-86, 2000 Summer. [PUBMED Abstract]
15. Handzo G: Where do chaplains fit in the world of cancer care? J Health Care Chaplain 4 (1-2): 29-44, 1992. [PUBMED Abstract]
16. Kristeller JL, Zumbrun CS, Schilling RF: 'I would if I could': how oncologists and oncology nurses address spiritual distress in cancer patients. Psychooncology 8 (5): 451-8, 1999 Sep-Oct. [PUBMED Abstract]
17. Puchalski C, Romer AL: Taking a spiritual history allows clinicians to understand patients more fully. J Palliat Med 3(1): 129-137, 2000.
18. Gordon T, Mitchell D: A competency model for the assessment and delivery of spiritual care. Palliat Med 18 (7): 646-51, 2004. [PUBMED Abstract]
149 19. Pargament KI: The Psychology of Religion and Coping: Theory, Research, Practice. New York, NY: Guilford Press, 1997.
20. Koenig HG: Spirituality in Patient Care: Why, How, When, and What. Philadelphia, Pa: Templeton Foundation Press, 2002.
21. Koenig HG, McCullough ME, Larson DB: Handbook of Religion and Health. New York, NY: Oxford University Press, 2001.
22. Tarakeshwar N, Vanderwerker LC, Paulk E, et al.: Religious coping is associated with the quality of life of patients with advanced cancer. J Palliat Med 9 (3): 646-57, 2006. [PUBMED Abstract]
23. Yanez B, Edmondson D, Stanton AL, et al.: Facets of spirituality as predictors of adjustment to cancer: relative contributions of having faith and finding meaning. J Consult Clin Psychol 77 (4): 730-41, 2009. [PUBMED Abstract]
24. Murray SA, Kendall M, Boyd K, et al.: Exploring the spiritual needs of people dying of lung cancer or heart failure: a prospective qualitative interview study of patients and their carers. Palliat Med 18 (1): 39-45, 2004. [PUBMED Abstract]
25. McCullough ME, Hoyt WT, Larson DB, et al.: Religious involvement and mortality: a meta-analytic review. Health Psychol 19 (3): 211-22, 2000. [PUBMED Abstract]
26. Jenkins RA, Pargament KI: Religion and spirituality as resources for coping with cancer. Journal of Psychosocial Oncology 13 (1/2): 51-74, 1995.
27. Chibnall JT, Videen SD, Duckro PN, et al.: Psychosocial-spiritual correlates of death distress in patients with life-threatening medical conditions. Palliat Med 16 (4): 331-8, 2002. [PUBMED Abstract]
28. Phelps AC, Maciejewski PK, Nilsson M, et al.: Religious coping and use of intensive life-prolonging care near death in patients with advanced cancer. JAMA 301 (11): 1140-7, 2009. [PUBMED Abstract]
29. Post SG, Puchalski CM, Larson DB: Physicians and patient spirituality: professional boundaries, competency, and ethics. Ann Intern Med 132 (7): 578-83, 2000. [PUBMED Abstract]
30. Sloan RP, Bagiella E, VandeCreek L, et al.: Should physicians prescribe religious activities? N Engl J Med 342 (25): 1913-6, 2000. [PUBMED Abstract]
31. Dagi TF: Prayer, piety and professional propriety: limits on religious expression in hospitals. J Clin Ethics 6 (3): 274-9, 1995 Fall. [PUBMED Abstract]
150 32. Kristeller JL, Rhodes M, Cripe LD, et al.: Oncologist Assisted Spiritual Intervention Study (OASIS): patient acceptability and initial evidence of effects. Int J Psychiatry Med 35 (4): 329-47, 2005. [PUBMED Abstract]
Definitions
Specific religious beliefs and practices should be distinguished from the idea of a universal capacity for spiritual and religious experiences. Although this distinction may not be salient or important on a personal basis, it is important conceptually for understanding various aspects of evaluation and the role of different beliefs, practices, and experiences in coping with cancer.
The most useful general distinction to make in this context is between religion and spirituality. There is no general agreement on definitions of either term, but there is general agreement on the usefulness of this distinction. A number of reviews address matters of definition.[1-3] Religion can be viewed as a specific set of beliefs and practices associated with a recognized religion or denomination. Spirituality is generally recognized as encompassing experiential aspects, whether related to engaging in religious practices or to acknowledging a general sense of peace and connectedness. The concept of spirituality is found in all cultures and is often considered to encompass a search for ultimate meaning through religion or other paths.[4] Within health care, concerns about spiritual or religious well-being have sometimes been viewed as an aspect of complementary and alternative medicine (CAM), but this perception may be more characteristic of providers than of patients. In one study,[5] virtually no patients but about
20% of providers said that CAM services were sought to assist with spiritual or religious
151 issues. Religion is highly culturally determined; spirituality is considered a universal human capacity, usually—but not necessarily—associated with and expressed in religious practice. Most individuals consider themselves both spiritual and religious; some may consider themselves religious but not spiritual. Others, including some atheists (people who do not believe in the existence of God) or agnostics (people who believe that God cannot be shown to exist), may consider themselves spiritual but not religious. In a sample of 369 representative cancer outpatients in New York City (33% minority), while only 6% identified themselves as agnostic or atheist, only 29% attended religious services weekly; 66% represented themselves as spiritual but not religious.[6]
One effort to characterize individuals by types of spiritual and religious experience [7] identified the following three groups, using cluster analytic techniques:
1. Religious individuals who highly value religious faith, spiritual well-being, and
the meaning of life.
2. Existential individuals who highly value spiritual well-being but not religious
faith.
3. Nonspiritual individuals who have little value for religiousness, spirituality, or a
sense of the meaning of life.
Individuals in the third group were far more distressed about their illness and were experiencing worse adjustment. There is as yet no consensus on the number or types of underlying dimensions of spirituality or religious engagement.
152 From the prospective of both the research and clinical literature on the relationships between religion, spirituality, and health, it is important to consider how these concepts are defined and used by investigators and authors. Much of the epidemiological literature that has indicated a relationship between religion and health has been based on definitions of religious involvement such as membership in a religious group or frequency of church attendance. Somewhat more complex is assessing specific beliefs or religious practices such as belief in God, frequency of prayer, or reading religious material. Individuals may engage in such practices or believe in God without necessarily attending church services. Terminology also carries certain connotations; the term religiosity, for example, has a history of implying fervor and perhaps undue investment in particular religious practices or beliefs. Religiousness may be a more neutral way to refer to the dimension of religious practice.
Spirituality and spiritual well-being are more challenging to define. Some definitions limit spirituality to mean profound mystical experiences; however, in considerations of effects on health and psychological well-being, the more helpful definitions focus on accessible feelings, such as a sense of inner peace, existential meaning, and purpose in life, or awe when walking in nature. For the purposes of this discussion, it is assumed that there is a continuum of meaningful spiritual experiences, from the common and accessible to the extraordinary and transformative. Both type and intensity of experience may vary. Other aspects of spirituality that have been identified by those working with medical patients include a sense of meaning and peace, a sense of faith, and a sense of connectedness to others or to God. Low levels of these experiences may be associated
153 with poorer coping (refer to the Relation of Religion and Spirituality to Adjustment,
Quality of Life, and Health Indices section).[3]
The definition of acute spiritual distress must be considered separately. Spiritual distress may result from the belief that cancer reflects punishment by God or may accompany a preoccupation with the question “Why me?” A cancer patient may also suffer a loss of faith.[8] Although many individuals may have such thoughts at some time following diagnosis, only a few individuals become obsessed with these thoughts or score high on a general measure of religious and spiritual distress (such as the Negative subscale of the
Religious Coping Scale [the R-Cope–Negative]).[8] High levels of spiritual distress may contribute to poorer health and psychosocial outcomes.[9,10] The tools for measuring these dimensions are described in the Screening and Assessment of Spiritual Concerns section.
References 1. Halstead MT, Mickley JR: Attempting to fathom the unfathomable: descriptive views of spirituality. Semin Oncol Nurs 13 (4): 225-30, 1997. [PUBMED Abstract]
2. Zinnbauer BJ, Pargament KL: Spiritual conversion: a study of religious change among college students. J Sci Study Relig 37(1): 161-180, 1998.
3. Breitbart W, Gibson C, Poppito SR, et al.: Psychotherapeutic interventions at the end of life: a focus on meaning and spirituality. Can J Psychiatry 49 (6): 366-72, 2004. [PUBMED Abstract]
4. Task force report: spirituality, cultural issues, and end of life care. In: Association of American Medical Colleges.: Report III. Contemporary Issues in Medicine: Communication in Medicine. Washington, DC: Association of American Medical Colleges, 1999, pp 24-9.
5. Ben-Arye E, Bar-Sela G, Frenkel M, et al.: Is a biopsychosocial-spiritual approach relevant to cancer treatment? A study of patients and oncology staff
154 members on issues of complementary medicine and spirituality. Support Care Cancer 14 (2): 147-52, 2006. [PUBMED Abstract]
6. Astrow AB, Wexler A, Texeira K, et al.: Is failure to meet spiritual needs associated with cancer patients' perceptions of quality of care and their satisfaction with care? J Clin Oncol 25 (36): 5753-7, 2007. [PUBMED Abstract]
7. Riley BB, Perna R, Tate DG, et al.: Types of spiritual well-being among persons with chronic illness: their relation to various forms of quality of life. Arch Phys Med Rehabil 79 (3): 258-64, 1998. [PUBMED Abstract]
8. Pargament KI: The Psychology of Religion and Coping: Theory, Research, Practice. New York, NY: Guilford Press, 1997.
9. Pargament KI, Koenig HG, Tarakeshwar N, et al.: Religious struggle as a predictor of mortality among medically ill elderly patients: a 2-year longitudinal study. Arch Intern Med 161 (15): 1881-5, 2001 Aug 13-27. [PUBMED Abstract]
10. Hills J, Paice JA, Cameron JR, et al.: Spirituality and distress in palliative care consultation. J Palliat Med 8 (4): 782-8, 2005. [PUBMED Abstract]
Relation of Religion and Spirituality to Adjustment, Quality of Life, and
Health Indices
Religion and spirituality have been shown to be significantly associated with measures of adjustment and with the management of symptoms in cancer patients. Religious and spiritual coping have been associated with lower levels of patient discomfort as well as reduced hostility, anxiety, and social isolation in cancer patients [1-4] and in family caregivers.[5] Specific characteristics of strong religious beliefs, including hope, optimism, freedom from regret, and life satisfaction, have also been associated with improved adjustment in individuals diagnosed with cancer.[6,7]
Type of religious coping may influence quality of life. In a multi-institutional cross- sectional study of 170 patients with advanced cancer, more use of positive religious
155 coping methods (such as benevolent religious appraisals) was associated with better
overall quality of life and higher scores on the existential and support domains of the
McGill Quality of Life Questionnaire. In contrast, more use of negative religious coping
methods (such as anger at God) was related to poorer overall quality of life and lower
scores on the existential and psychological domains.[8,9] A study of 95 cancer patients
diagnosed within the past 5 years found that spirituality was associated with less distress
and better quality of life regardless of perceived life threat, with existential well-being but
not religious well-being as the major contributor.[10]
Spiritual well-being, particularly a sense of meaning and peace,[11] is significantly
associated with an ability of cancer patients to continue to enjoy life despite high levels
of pain or fatigue. Spiritual well-being and depression are inversely related.[12,13]
Higher levels of a sense of inner meaning and peace have also been associated with lower
levels of depression, whereas measures of religiousness were unrelated to depression.[14]
This relationship has been specifically demonstrated in the cancer setting. In a cross-
sectional survey of 85 hospice patients with cancer, there was a negative correlation
between anxiety and depression (as measured by the Hospital Anxiety and Depression
Scale) and overall spiritual well-being (as measured by the Spiritual Well-Being Scale) (P
< .0001). There was also a negative correlation between the existential well-being scores and the anxiety and depression scores but not with the religious well-being score (P < .
001).[15] These patterns were also found in a large study of indigent prostate cancer survivors; the patterns were consistent across ethnicity and metastatic status.[16]
156 In a large (N = 418) study of breast cancer patients, a higher level of meaning and peace was associated with a decline in depression over 12 months, whereas higher religiousness predicted an increase in depression, particularly if meaning/peace was lower.[17][Level of evidence: II] A second study with mixed gender/mixed cancer survivors (N = 165) found similar patterns. In both studies, high levels of religiousness were linked to increases in perceived cancer-related growth.[17][Level of evidence: II] In a convenience sample, 222 low-income men with prostate cancer were surveyed about spirituality and health-related quality of life. Low scores in spirituality, as measured by the peace/ meaning and faith subscale of the Functional Assessment of Chronic Illness Therapy—
Spiritual Well-Being (FACIT-Sp), were associated with significantly worse physical and mental health than were high scores in spirituality.[18]
A large national survey study of female family caregivers (N = 252; 89% white) identified that higher levels of spirituality, as measured by the FACIT-Sp, were associated with much less psychological distress (measured by the Pearlin Stress Scale). Participants with higher levels of spirituality actually had improved well-being even as caregiving stress increased, while those with lower levels of spirituality showed the opposite pattern, suggesting a strong stress-buffering effect of spiritual well-being. This finding reinforces the need to identify low spiritual well-being when assessing the coping capacity of family caregivers as well as patients.[5]
One author [19] found that cancer survivors who had drawn on spiritual resources reported substantial personal growth as a function of dealing with the trauma of cancer.
This was also found in a survey study of 100 well-educated, mostly married/partnered
157 white women with early-stage breast cancer, recruited for the study from an Internet Web site, in which increasing levels of spiritual struggle were related to poorer emotional adjustment, though not to other aspects of cancer-related quality of life.[20] Using path analytic techniques, a study of women with breast cancer found that at both prediagnosis and 6 months postsurgery, holding negative images of God was the strongest predictor of emotional distress and lower social well-being.[21] However, longitudinal analyses failed to find sustained effects for baseline positive or negative attitudes toward God at either 6 or 12 months. One possible explanation for these findings is that such attitudes are somewhat unstable during a period of uncertainty (e.g., at prediagnosis).[21]
Engaging in prayer is often cited as an adaptive tool,[22] but qualitative research [23] found that for about one third of cancer patients interviewed, concerns about how to pray effectively or the questions raised about the effectiveness of prayer also caused inner conflict and mild distress. A useful discussion of how prayer is used by cancer patients and how clinicians might conceptualize prayer has been published.[24]
Ethnicity and spirituality were investigated in a qualitative study of 161 breast cancer survivors. In individual interviews, most participants (83%) spoke about some aspect of their spirituality. Seven themes were identified: “God as a Comforting Presence,”
“Questioning Faith,” “Anger at God,” “Spiritual Transformation of Self and Attitude
Towards Others/Recognition of Own Mortality,” “Deepening of Faith,” “Acceptance,” and “Prayer by Self.” A higher percentage of African Americans, Latinas, and persons identified as Christians were more likely to feel comforted by God than were other groups.[25]
158 Positive religious involvement and spirituality appear to be associated with better health and longer life expectancy, even after controlling for other variables such as health behaviors and social support, as shown in one meta-analysis.[26] Although little of this research is specific to cancer patients, one study of 230 patients with advanced cancer
(expected prognosis <1 year) investigated a variety of associations between religiousness and spiritual support.[27] Most study participants (88%) considered religion either very important (68%) or somewhat important (20%); more African Americans and Hispanics than whites reported religion to be very important. Spiritual support by religious communities or the medical system was associated with better patient quality of life. Age was not associated with religiousness. At the time of recruitment to participate in the study, increasing self-reported distress was associated with increasing religiousness, and private religious or spiritual activities were performed by a larger percentage of patients after their diagnosis (61%) than before (47%). Regarding spiritual support, 38% reported that their spiritual needs were supported by a religious community “to a large extent or completely,” while 47% reported receiving support from a religious community “to a small extent or not at all.” Finally, religiousness was also associated with the end-of-life treatment preference of “wanting all measures taken to extend life.” Another study [28] found that helper and cytotoxic T-cell counts were higher among women with metastatic breast cancer who reported greater importance of spirituality. Other investigators [29] found that attendance at religious services was associated with better immune system functioning. Other research [30,31] suggests that religious distress negatively affects
159 health status. These associations, however, have been criticized as weak and inconsistent.
[32]
Several randomized trials with cancer patients have suggested that group support interventions benefit survival.[33,34] These studies must be interpreted cautiously, however. First, the treatments focused on general psychotherapeutic issues and psychosocial support. Although spiritually relevant issues undoubtedly arose in these settings, they were not the focus of the groups. Second, there has been difficulty replicating these effects.[35]
References 1. Acklin MW, Brown EC, Mauger PA: The role of religious values in coping with cancer. J Relig Health 22 (4): 322-333, 1983.
2. Kaczorowski JM: Spiritual well-being and anxiety in adults diagnosed with cancer. Hosp J 5 (3-4): 105-16, 1989. [PUBMED Abstract]
3. McCullough ME, Hoyt WT, Larson DB, et al.: Religious involvement and mortality: a meta-analytic review. Health Psychol 19 (3): 211-22, 2000. [PUBMED Abstract]
4. Janiszewska J, Buss T, de Walden-Gałuszko K, et al.: The religiousness as a way of coping with anxiety in women with breast cancer at different disease stages. Support Care Cancer 16 (12): 1361-6, 2008. [PUBMED Abstract]
5. Kim Y, Wellisch DK, Spillers RL, et al.: Psychological distress of female cancer caregivers: effects of type of cancer and caregivers' spirituality. Support Care Cancer 15 (12): 1367-74, 2007. [PUBMED Abstract]
6. Weisman AD, Worden JW: The existential plight in cancer: significance of the first 100 days. Int J Psychiatry Med 7 (1): 1-15, 1976-77. [PUBMED Abstract]
7. Pargament KI: The Psychology of Religion and Coping: Theory, Research, Practice. New York, NY: Guilford Press, 1997.
8. Tarakeshwar N, Vanderwerker LC, Paulk E, et al.: Religious coping is associated with the quality of life of patients with advanced cancer. J Palliat Med 9 (3): 646-57, 2006. [PUBMED Abstract]
160 9. Hills J, Paice JA, Cameron JR, et al.: Spirituality and distress in palliative care consultation. J Palliat Med 8 (4): 782-8, 2005. [PUBMED Abstract]
10. Laubmeier KK, Zakowski SG, Bair JP: The role of spirituality in the psychological adjustment to cancer: a test of the transactional model of stress and coping. Int J Behav Med 11 (1): 48-55, 2004. [PUBMED Abstract]
11. Brady MJ, Peterman AH, Fitchett G, et al.: A case for including spirituality in quality of life measurement in oncology. Psychooncology 8 (5): 417-28, 1999 Sep-Oct. [PUBMED Abstract]
12. O'Mahony S, Goulet J, Kornblith A, et al.: Desire for hastened death, cancer pain and depression: report of a longitudinal observational study. J Pain Symptom Manage 29 (5): 446-57, 2005. [PUBMED Abstract]
13. Whitford HS, Olver IN, Peterson MJ: Spirituality as a core domain in the assessment of quality of life in oncology. Psychooncology 17 (11): 1121-8, 2008. [PUBMED Abstract]
14. Nelson CJ, Rosenfeld B, Breitbart W, et al.: Spirituality, religion, and depression in the terminally ill. Psychosomatics 43 (3): 213-20, 2002 May-Jun. [PUBMED Abstract]
15. McCoubrie RC, Davies AN: Is there a correlation between spirituality and anxiety and depression in patients with advanced cancer? Support Care Cancer 14 (4): 379-85, 2006. [PUBMED Abstract]
16. Krupski TL, Kwan L, Afifi AA, et al.: Geographic and socioeconomic variation in the treatment of prostate cancer. J Clin Oncol 23 (31): 7881-8, 2005. [PUBMED Abstract]
17. Yanez B, Edmondson D, Stanton AL, et al.: Facets of spirituality as predictors of adjustment to cancer: relative contributions of having faith and finding meaning. J Consult Clin Psychol 77 (4): 730-41, 2009. [PUBMED Abstract]
18. Krupski TL, Kwan L, Fink A, et al.: Spirituality influences health related quality of life in men with prostate cancer. Psychooncology 15 (2): 121-31, 2006. [PUBMED Abstract]
19. Carpenter JS, Brockopp DY, Andrykowski MA: Self-transformation as a factor in the self-esteem and well-being of breast cancer survivors. J Adv Nurs 29 (6): 1402-11, 1999. [PUBMED Abstract]
161 20. Manning-Walsh J: Spiritual struggle: effect on quality of life and life satisfaction in women with breast cancer. J Holist Nurs 23 (2): 120-40; discussion 141-4, 2005. [PUBMED Abstract]
21. Gall TL, Kristjansson E, Charbonneau C, et al.: A longitudinal study on the role of spirituality in response to the diagnosis and treatment of breast cancer. J Behav Med 32 (2): 174-86, 2009. [PUBMED Abstract]
22. Halstead MT, Fernsler JI: Coping strategies of long-term cancer survivors. Cancer Nurs 17 (2): 94-100, 1994. [PUBMED Abstract]
23. Taylor EJ, Outlaw FH, Bernardo TR, et al.: Spiritual conflicts associated with praying about cancer. Psychooncology 8 (5): 386-94, 1999 Sep-Oct. [PUBMED Abstract]
24. Taylor EJ, Outlaw FH: Use of prayer among persons with cancer. Holist Nurs Pract 16 (3): 46-60, 2002. [PUBMED Abstract]
25. Levine EG, Yoo G, Aviv C, et al.: Ethnicity and spirituality in breast cancer survivors. J Cancer Surviv 1 (3): 212-25, 2007. [PUBMED Abstract]
26. Mueller PS, Plevak DJ, Rummans TA: Religious involvement, spirituality, and medicine: implications for clinical practice. Mayo Clin Proc 76 (12): 1225-35, 2001. [PUBMED Abstract]
27. Balboni TA, Vanderwerker LC, Block SD, et al.: Religiousness and spiritual support among advanced cancer patients and associations with end-of-life treatment preferences and quality of life. J Clin Oncol 25 (5): 555-60, 2007. [PUBMED Abstract]
28. Sephton SE, Koopman C, Schaal M, et al.: Spiritual expression and immune status in women with metastatic breast cancer: an exploratory study. Breast J 7 (5): 345-53, 2001 Sep-Oct. [PUBMED Abstract]
29. Koenig HG, Cohen HJ, George LK, et al.: Attendance at religious services, interleukin-6, and other biological parameters of immune function in older adults. Int J Psychiatry Med 27 (3): 233-50, 1997. [PUBMED Abstract]
30. Koenig HG, Pargament KI, Nielsen J: Religious coping and health status in medically ill hospitalized older adults. J Nerv Ment Dis 186 (9): 513-21, 1998. [PUBMED Abstract]
31. Pargament KI, Koenig HG, Tarakeshwar N, et al.: Religious struggle as a predictor of mortality among medically ill elderly patients: a 2-year longitudinal study. Arch Intern Med 161 (15): 1881-5, 2001 Aug 13-27. [PUBMED Abstract]
162 32. Sloan RP, Bagiella E: Claims about religious involvement and health outcomes. Ann Behav Med 24 (1): 14-21, 2002 Winter. [PUBMED Abstract]
33. Spiegel D, Bloom JR, Kraemer H, et al.: Psychological support for cancer patients. Lancet 2 (8677): 1447, 1989. [PUBMED Abstract]
34. Fawzy FI, Fawzy NW, Hyun CS, et al.: Malignant melanoma. Effects of an early structured psychiatric intervention, coping, and affective state on recurrence and survival 6 years later. Arch Gen Psychiatry 50 (9): 681-9, 1993. [PUBMED Abstract]
35. Cunningham AJ, Edmonds CV, Jenkins GP, et al.: A randomized controlled trial of the effects of group psychological therapy on survival in women with metastatic breast cancer. Psychooncology 7 (6): 508-17, 1998 Nov-Dec. [PUBMED Abstract]
Screening and Assessment of Spiritual Concerns
Raising spiritual concerns with patients can be accomplished by the following approaches:[1,2]
• Waiting for the patient to bring up spiritual concerns.
• Requesting that the patient complete a paper-and-pencil assessment.
• Having the physician do a spiritual inquiry or assessment by indicating his or her
openness to a discussion.
These approaches have different potential value and limitations. Patients may express reluctance to bring up spiritual issues, noting that they would prefer to wait for the provider to broach the subject. Standardized assessment tools vary, have generally been designed for research purposes, and need to be reviewed and utilized appropriately by the provider. Physicians, unless trained specifically to address such issues, may feel
163 uncomfortable raising spiritual concerns with patients.[3] However, an increasing number of models are becoming available for physician use and training.[4]
Numerous assessment tools are pertinent to performing a religious and spiritual assessment. Table 1 summarizes a selection of assessment tools. Several factors should be considered before choosing an assessment tool:
• Focus of the evaluation (religious practice or spiritual well-being/distress).
• Purpose of the assessment (e.g., screening for distress vs. evaluation of all patients
as part of care).
• Modality of the assessment (interview or questionnaire).
• Feasibility of the assessment (staff and patient burden).
The line between assessment and intervention is blurred, and simply inquiring about an area such as religious or spiritual coping may be experienced by the patient as an opening for further exploration and validation of the importance of this experience. Evidence suggests that such an inquiry will be experienced as intrusive and distressing by only a very small proportion of patients. Key assessment approaches are briefly reviewed below; pertinent characteristics are summarized in Table 1.
Standardized Assessment Measures
One of several paper-and-pencil measures can be given to patients to assess religious and spiritual needs. These measures have the advantage of being self-administered; however, they were mostly designed as research tools, and their role for clinical assessment purposes is not as well understood. These measures may be helpful in opening up the area
164 for exploration and for ascertaining basic levels of religious engagement or spiritual well- being (or spiritual distress). Most also assume a belief in God and therefore may seem inappropriate for an atheist or agnostic patient, who may still be spiritually oriented. All of the measures have undergone varying degrees of psychometric development, and most are being used in investigations of the relationship between religion or spirituality, health indices, and adjustment to illness.
• Duke Religious Index (DRI). The DRI (or DUREL) [5][Level of evidence: II][6]
is short (five items) and has reasonable psychometric properties [5] examined in
cancer patients. It is best used as an indicator of religious involvement rather than
spirituality and has low or modest correlations with psychological well-being.
• Systems of Belief Inventory (SBI-15R). The SBI-15R [7][Level of evidence: II]
has undergone careful psychometric development and measures two domains:
1. Presence and importance of religious and spiritual beliefs and practices.
2. Value of support from a religious/spiritual community.
The questions are worded well and may provide a good initiation for further
discussion and exploration.
• Brief Measure of Religious Coping (RCOPE). The Brief RCOPE [8][Level of
evidence: II] has two dimensions: positive religious coping and negative religious
coping, with five items each. The second factor appears to uniquely identify a
very important aspect of spiritual adjustment, i.e., the degree to which conflict,
self-blame, or anger at God is present for an individual. A longer form of the
165 scale, with additional dimensions, would be suitable for a more comprehensive
assessment of religious/spiritual concerns. Psychometric development is high.
While high scores in negative religious coping are unusual, they are particularly
powerful in predicting poor adjustment to disease.[9]
• Functional Assessment of Chronic Illness Therapy—Spiritual Well-Being
(FACIT-Sp).[10] The FACIT-Sp is part of the widely used Functional Assessment
of Cancer Therapy (FACT) quality-of-life battery.[11] It was developed with an
ethnically diverse cancer population and contains 12 items and 2 factors (faith,
and meaning and peace), with good to excellent psychometric properties;
although some evidence suggests that inner meaning and inner peace can be
identified as two separate factors, such identification does not appear to
substantially improve associations with other indicators of well-being.[12] One
characteristic of this scale is that the wording of items does not assume a belief in
God. Therefore, it can be comfortably completed by an atheist or agnostic, yet it
taps into both traditional religiousness dimensions (faith factor) and spiritual
dimensions (meaning and peace factor). The meaning and peace factor has been
shown to have particularly strong associations with psychological adjustment, in
that individuals who score high on this scale are much more likely to report
generally enjoying life despite fatigue or pain, are less likely to desire a hastened
death at the end of life,[13][Level of evidence: II] report better disease-specific
and psychosocial adjustment,[14-16] and report lower levels of helplessness/
hopelessness.[16] These associations have been shown to be independent of other
166 indicators of adjustment, supporting the value of adding assessment of this
dimension to standard quality-of-life evaluations.[10,16] Total scores on the
FACIT-Sp correlated highly over time (27 weeks) with a 10-point linear analogue
scale of spiritual well-being in a sample of advanced cancer patients. The linear
scale (Spiritual Well-Being Linear Analogue Self-Assessment [SWB LASA]) was
worded, “How would you describe your overall spiritual well-being?” and ratings
ranged from 0 (as bad as it can be) to 10 (as good as it can be).[17]
• Spiritual Transformation Scale (STS).[18] The STS is a 40-item measure of
change in spiritual engagement following cancer diagnosis. It has two subscales:
Spiritual Growth (SG) and Spiritual Decline (SD). The SG factor is highly
correlated with the Positive RCOPE ® = .71) and the Post-traumatic Growth
Inventory ® = .68), while the SD factor is correlated with the Negative RCOPE ®
= .56) and the Center for Epidemiologic Studies Depression Scale (CES-D) ® = .
40). Analyses show that the STS accounts for additional variance on depression,
other measures of adjustment (Positive and Negative Affect Schedule [PANAS]),
and the Daily Spiritual Experience Scale.[18] Individuals with later stage cancer
(stage III or IV) had higher scores on SG, as did individuals with a recurrence
rather than a new diagnosis. Individuals with higher scores on SD were more
likely to have not graduated from high school. A unique strength of this scale is
that it is specific to change in spirituality since diagnosis; wording on items is also
generally appropriate for individuals who identify as spiritual rather than
167 religious. Among the limitations of this scale is that development to date includes
mostly observant Christians, with few minorities in the sample.
Interviewing Tools
The following are semistructured interviewing tools designed to facilitate an exploration, by the physician or other health care provider, of religious beliefs and spiritual experiences or issues. The tools take the spiritual history approach and have the advantage of engaging the patient in dialogue, identifying possible areas of concern, and indicating the need for provision of further resources such as referral to a chaplain or support group. These approaches, however, have not been systematically investigated as empirical measures or indices of religiousness or of spiritual well-being or distress.
• The SPIRITual History.[19] The SPIRIT is an acronym for the six domains
explored by this tool: S, spiritual belief system; P, personal spirituality; I,
integration with a spiritual community; R, ritualized practices and restrictions; I,
implications for medical care; T, terminal events planning. The 6 domains are
covered by 22 items, which may be covered in as little as 10 or 15 minutes or
integrated into general interviewing over several appointments. A strength of this
tool is the number of questions pertinent to managing serious illness and to
gaining an understanding of how patient religious beliefs may bear on patient care
decisions.
• Faith, Importance/Influence, Community, and Address (FICA) Spiritual
History.[1] FICA is an acronym for Faith, Importance/Influence, Community, and
Address, with a set of questions to explore each area (e.g., What is your faith?
168 How important is it? Are you part of a religious community? How would you like
me as your provider to address these issues in your care?). Although developed as
a spiritual history tool for use in primary care settings, it would lend itself to any
patient population. The relative simplicity of the approach has led to its adoption
by many medical schools.
Table 1. Assessment of Religion and Spirituality in Cancer Patients
Specific Level of Length/ Other Purpose/ Focus/ to Tool Developer Psychometric Characteristics Subscale (No.) Cancer Development / Comments Patients? Systems of Holland et Two factors: Yes High Four items Belief Inventory al. Beliefs/ assume belief in (SBI-15R) [7] experience (10); God religious social support (5) DRI/DUREL [5] Sherman et Religious Yes Moderate al. involvement (5) FACIT-Sp Brady et Two factors: Yes High. Limited Part of FACT-G [10,15] al.; Meaning & peace cross- quality-of-life Peterman (8), faith (4) validation battery [11] data. Brief R-COPE Pargament Two factors: No Very High [8] et al. Positive coping; negative coping/ distress Fetzer Fetzer Multiple No High. Under Multidimensiona subscales development. l Scale [20] FICA: Spiritual Puchalski Brief spiritual No Low MD interview history [1] et al. history assessment SPIRIT [19] Maugans In-depth No Low MD interview interview with assessment guided questions
169 Specific Level of Length/ Other Purpose/ Focus/ to Tool Developer Psychometric Characteristics Subscale (No.) Cancer Development / Comments Patients? Spiritual Cole et al. Two factors: Yes Moderate Forty items. Transformation Spiritual Growth Unique to Scale (STS) [18] and Spiritual assessing Decline change in spiritual experience post–cancer diagnosis.
References 1. Puchalski C, Romer AL: Taking a spiritual history allows clinicians to understand patients more fully. J Palliat Med 3(1): 129-137, 2000.
2. Kristeller JL, Zumbrun CS, Schilling RF: 'I would if I could': how oncologists and oncology nurses address spiritual distress in cancer patients. Psychooncology 8 (5): 451-8, 1999 Sep-Oct. [PUBMED Abstract]
3. Sloan RP, Bagiella E, VandeCreek L, et al.: Should physicians prescribe religious activities? N Engl J Med 342 (25): 1913-6, 2000. [PUBMED Abstract]
4. Puchalski CM, Larson DB: Developing curricula in spirituality and medicine. Acad Med 73 (9): 970-4, 1998. [PUBMED Abstract]
5. Sherman AC, Plante TG, Simonton S, et al.: A multidimensional measure of religious involvement for cancer patients: the Duke Religious Index. Support Care Cancer 8 (2): 102-9, 2000. [PUBMED Abstract]
6. Koenig H, Parkerson GR Jr, Meador KG: Religion index for psychiatric research. Am J Psychiatry 154 (6): 885-6, 1997. [PUBMED Abstract]
7. Holland JC, Kash KM, Passik S, et al.: A brief spiritual beliefs inventory for use in quality of life research in life-threatening illness. Psychooncology 7 (6): 460-9, 1998 Nov-Dec. [PUBMED Abstract]
8. Pargament KI, Smith BW, Koenig HG, et al.: Patterns of positive and negative religious coping with major life stressors. J Sci Study Relig 37 (4): 710-24, 1998.
9. Hills J, Paice JA, Cameron JR, et al.: Spirituality and distress in palliative care consultation. J Palliat Med 8 (4): 782-8, 2005. [PUBMED Abstract]
170 10. Brady MJ, Peterman AH, Fitchett G, et al.: A case for including spirituality in quality of life measurement in oncology. Psychooncology 8 (5): 417-28, 1999 Sep-Oct. [PUBMED Abstract]
11. Cella DF, Tulsky DS, Gray G, et al.: The Functional Assessment of Cancer Therapy scale: development and validation of the general measure. J Clin Oncol 11 (3): 570-9, 1993. [PUBMED Abstract]
12. Canada AL, Murphy PE, Fitchett G, et al.: A 3-factor model for the FACIT-Sp. Psychooncology 17 (9): 908-16, 2008. [PUBMED Abstract]
13. O'Mahony S, Goulet J, Kornblith A, et al.: Desire for hastened death, cancer pain and depression: report of a longitudinal observational study. J Pain Symptom Manage 29 (5): 446-57, 2005. [PUBMED Abstract]
14. Krupski TL, Saigal CS, Hanley J, et al.: Patterns of care for men with prostate cancer after failure of primary treatment. Cancer 107 (2): 258-65, 2006. [PUBMED Abstract]
15. Peterman AH, Fitchett G, Brady MJ, et al.: Measuring spiritual well-being in people with cancer: the functional assessment of chronic illness therapy--Spiritual Well-being Scale (FACIT-Sp). Ann Behav Med 24 (1): 49-58, 2002 Winter. [PUBMED Abstract]
16. Whitford HS, Olver IN, Peterson MJ: Spirituality as a core domain in the assessment of quality of life in oncology. Psychooncology 17 (11): 1121-8, 2008. [PUBMED Abstract]
17. Johnson ME, Piderman KM, Sloan JA, et al.: Measuring spiritual quality of life in patients with cancer. J Support Oncol 5 (9): 437-42, 2007. [PUBMED Abstract]
18. Cole BS, Hopkins CM, Tisak J, et al.: Assessing spiritual growth and spiritual decline following a diagnosis of cancer: reliability and validity of the spiritual transformation scale. Psychooncology 17 (2): 112-21, 2008. [PUBMED Abstract]
19. Maugans TA: The SPIRITual history. Arch Fam Med 5 (1): 11-6, 1996. [PUBMED Abstract]
20. Multidimensional Measurement of Religiousness/Spirituality for Use in Health Research: A Report of the Fetzer Institute/National Institute on Aging Working Group. Kalamazoo, Mich: Fetzer Institute, 1999.
Modes of Intervention
171 Various modes of intervention or assistance might be considered to address the spiritual concerns of patients. These include the following:
• Exploration by the physician or other health care provider within the context of
usual medical care.
• Encouragement for the patient to seek assistance from his or her own clergy.
• Formal referral to a hospital chaplain.
• Referral to a religious or faith-based therapist.
• Referral to a range of support groups that are known to address spiritual issues.
Two survey studies [1,2] found that physicians consistently underestimate the degree to which patients want spiritual concerns addressed. An Israeli study found that patients expressed the desire that 18% of a hypothetical 10-minute visit be spent addressing such concerns, while their providers estimated that 12% of the time should be spent in this way.[2] This study also found that while providers perceived that a patient's desire for addressing spiritual concerns related to a broader interest in complementary and alternative medicine (CAM) modalities, patients viewed CAM-related issues and spiritual/religious concerns as quite separate.
Physicians
A task force [3] of physicians and end-of-life specialists suggested several guidelines for physicians who wish to respond to patients’ spiritual concerns:
• Respect the patient’s views and follow the patient’s lead.
172 • Make a connection by listening carefully and acknowledging the patient’s
concerns, but avoid theological discussions or engaging in specific religious
rituals.
• Maintain one's own integrity in relation to one's own religious beliefs and
practices.
• Identify common goals for care and medical decisions.
• Mobilize other resources of support for the patient, such as referring the patient to
a chaplain or encouraging contact with the patient’s own clergy.
Inquiring about religious or spiritual concerns by physicians or other health care professionals may provide valuable and appreciated support to patients. Most cancer patients appear to welcome a dialogue about such concerns, regardless of diagnosis or prognosis. In a large survey of cancer outpatients, between 20% and 35% expressed a desire for religious and spiritual resources, help with talking about finding meaning in life, help with finding hope, talking about death and dying, and finding peace of mind.[4]
[Level of evidence: II] It is appropriate to initiate such an inquiry once initial diagnosis and treatment issues have been discussed and considered by the patient (approximately a month after diagnosis or later). In a large, multisite, longitudinal study of patients with advanced cancer,[5][Level of evidence: II] there was considerable variation in whether spiritual concerns were addressed by medical staff, with about 50% reporting at least some support at three of the settings, in contrast to fewer than 15% reporting some support at the other four settings. Support received from the medical team predicted
173 greater quality of life, greater likelihood of receiving hospice care at the end of life, and for patients who have high levels of religious coping, less aggressive care.
One trial,[6][Level of evidence: II] with a sample of 115 mixed-diagnosis patients (54% under active treatment), evaluated a 5-minute semistructured inquiry into spiritual and religious concerns. The four physicians’ personal religious backgrounds included two
Christians, one Hindu, and one Sikh; 81% of patients were Christian. Unlike the history- oriented interviews noted above, this inquiry was informed by brief patient-centered counseling approaches that view the physician as an important source of empowerment to help patients identify and address personal concerns (see Table 2 below for the content).
After 3 weeks, the intervention group had larger reductions in depression, had more improvement in quality of life, and rated their relationship with the physician more favorably. Effects for quality of life remained after statistically adjusting for change in other variables. More improvement was also seen in patients who scored lower in spiritual well-being, as measured by the Functional Assessment of Chronic Illness
Therapy—Spiritual Well-Being (FACIT-Sp) at baseline. Acceptability was high, with physicians rating themselves as “comfortable” in providing the intervention during 85% of encounters. Seventy-six percent of patients characterized the inquiry as “somewhat” to
“very” useful. Physicians were twice as likely to underestimate the usefulness of the inquiry to patients rather than to overestimate it, in relation to the patient ratings.
The statements in Table 2 may be used to initiate a dialogue between health care provider and patient.
Table 2. Exploring Spiritual/Religious Concerns in Adults With Cancera
174 Health Care Possible Patient Response Health Care Provider Reply Provider Action aAdapted from Kristeller et al.[6] Introduce issue in When dealing with a serious illness, neutral inquiring many people draw on religious or manner. spiritual beliefs to help cope. It would be helpful to me to know how you feel about this. Inquire further, Positive-Active Faith What have you found most helpful adjusting inquiry to Response about your beliefs since your illness? patient’s initial Neutral-Receptive ResponseHow might you draw on your faith or response. spiritual beliefs to help you? Spiritually Distressed Many people feel that way…what might Response (e.g., expression help you come to terms with this? of anger or guilt) Defensive/Rejecting It sounds like you’re uncomfortable that Response I brought this up. What I’m really interested in is how you are coping… can you tell me about that? Continue to explore I see. Can you tell me more (about….)? further as indicated. Inquire about ways Is there some way in which you are able of finding meaning to find a sense of meaning or peace in and a sense of the midst of this? peace. Inquire about Whom do you have to talk to about this/ resources. these concerns? Offer assistance as Perhaps we can arrange for you to talk appropriate and to someone./There’s a support group I available. can suggest./There are some reading materials in the waiting room. Bring inquiry to a I appreciate you discussing these issues close. with me. May I ask about it again?
A common concern is whether to offer to pray with patients. Although one study [7] found that more than one-half of the patients surveyed expressed a desire to have physicians pray with them, a large proportion does not express this preference. A qualitative study of cancer patients [8] found that patients were concerned that physicians
175 are too busy, not interested, or even prohibited from discussing religion. At the same time, they generally wanted their physician to acknowledge the value of spiritual and religious issues. A suggestion was made that physicians might raise the question of prayer by asking, “Would that comfort you?” The most important guideline is to remain sensitive to the patient’s preference; therefore, asking patients about their beliefs or spiritual concerns in the context of exploring how they are coping in general is a viable approach in exploring these issues.
Hospital Chaplains
Traditional means of providing assistance to patients has generally been through the services of hospital chaplains.[9,10] Hospital chaplains can play a key role in addressing spiritual and religious issues; chaplains are trained to work with a wide range of issues as they arise for medical patients and to be sensitive to the diverse beliefs and concerns that patients may have.[11] Chaplains are generally available in large medical centers, but they may not be available in smaller hospitals on a reliable basis. Chaplains are rarely available in the outpatient settings where most care is now delivered (especially early in the course of cancer treatment, when these issues may first arise). In a large, multisite, longitudinal study of patients with advanced cancer,[5][Level of evidence: II] only 46% of patients reported receiving pastoral care visits. While these visits were not associated with receipt of end-of-life care (either hospice or aggressive measures), they were associated with better quality of life near death.
Another traditional approach in outpatient settings is having spiritual/religious resources available in waiting rooms. This is relatively easy to do, and many such resources exist;
176 however, a breadth of resources covering all faith backgrounds of patients is highly desirable (refer to the Additional Resources section).
Support Groups
Support groups may provide a setting in which patients may explore spiritual concerns. If spiritual concerns are important to a patient, the health care provider may need to identify whether a locally available group addresses these issues. The published data on the specific effects of support groups on assisting with spiritual concerns is relatively sparse, partly because this aspect of adjustment has not been systematically evaluated. A randomized trial [12][Level of evidence: I] compared the effects of a mind-body-spirit group to a standard group support program for women with breast cancer. Both groups showed improvement in spiritual well-being, although there were appreciably more differential effects for the mind-body-spirit group in the area of spiritual integration.
A study of 97 lower-income women with breast cancer who were participating in an online support group examined the relationship between a variety of psychosocial outcomes and religious expression (as indicated by the use of religious words such as faith, God, pray, holy, or spirit). Results showed that women who communicated a deeper religiousness in their online writing to others were found to have lower levels of negative emotions, higher levels of perceived health self-efficacy, and higher functional well-being.[13] An exploratory study of a monthly spirituality-based support group program for African American women with breast cancer suggested high levels of satisfaction in a sample that already had high levels of engagement in the religious and spiritual aspects of their lives.[14][Level of evidence: III]
177 One author [15] presents a well-developed model of adjuvant psychological therapy that uses a large group format and addresses both basic coping issues and spiritual concerns and healing, using a combination of group exploration, meditation, prayer, and other spiritually oriented exercises. In a carefully conducted longitudinal qualitative study of 22 patients enrolled in this type of intervention,[16] researchers found that patients who were more psychologically engaged with the issues presented were more likely to survive longer. Other approaches are available but have yet to be systematically evaluated,[17,18] have not explicitly addressed religious and spiritual issues, or have failed to evaluate the effects of the intervention on spiritual well-being.[19]
Other
Other therapies may also support spiritual growth and post-traumatic benefit finding. For example, in a nonrandomized comparison of mindfulness-based stress reduction (n = 60) and a healing arts program (n = 44) in cancer outpatients with a variety of diagnoses, both programs significantly improved facilitation of positive growth in participants, although improvement in spirituality, stress, depression, and anger was significantly larger for the mindfulness-based stress reduction group.[20][Level of evidence: II]
References 1. Kristeller JL, Zumbrun CS, Schilling RF: 'I would if I could': how oncologists and oncology nurses address spiritual distress in cancer patients. Psychooncology 8 (5): 451-8, 1999 Sep-Oct. [PUBMED Abstract]
2. Ben-Arye E, Bar-Sela G, Frenkel M, et al.: Is a biopsychosocial-spiritual approach relevant to cancer treatment? A study of patients and oncology staff members on issues of complementary medicine and spirituality. Support Care Cancer 14 (2): 147-52, 2006. [PUBMED Abstract]
178 3. Lo B, Ruston D, Kates LW, et al.: Discussing religious and spiritual issues at the end of life: a practical guide for physicians. JAMA 287 (6): 749-54, 2002. [PUBMED Abstract]
4. Astrow AB, Wexler A, Texeira K, et al.: Is failure to meet spiritual needs associated with cancer patients' perceptions of quality of care and their satisfaction with care? J Clin Oncol 25 (36): 5753-7, 2007. [PUBMED Abstract]
5. Balboni TA, Paulk ME, Balboni MJ, et al.: Provision of spiritual care to patients with advanced cancer: associations with medical care and quality of life near death. J Clin Oncol 28 (3): 445-52, 2010. [PUBMED Abstract]
6. Kristeller JL, Rhodes M, Cripe LD, et al.: Oncologist Assisted Spiritual Intervention Study (OASIS): patient acceptability and initial evidence of effects. Int J Psychiatry Med 35 (4): 329-47, 2005. [PUBMED Abstract]
7. King DE, Bushwick B: Beliefs and attitudes of hospital inpatients about faith healing and prayer. J Fam Pract 39 (4): 349-52, 1994. [PUBMED Abstract]
8. Hebert RS, Jenckes MW, Ford DE, et al.: Patient perspectives on spirituality and the patient-physician relationship. J Gen Intern Med 16 (10): 685-92, 2001. [PUBMED Abstract]
9. Fitchett G, Meyer PM, Burton LA: Spiritual care in the hospital: who requests it? Who needs it? J Pastoral Care 54 (2): 173-86, 2000 Summer. [PUBMED Abstract]
10. Handzo G: Where do chaplains fit in the world of cancer care? J Health Care Chaplain 4 (1-2): 29-44, 1992. [PUBMED Abstract]
11. Association of Professional Chaplains., Association for Clinical Pastoral Education., Canadian Association for Pastoral Practice and Education., et al.: A White Paper. Professional chaplaincy: its role and importance in healthcare. J Pastoral Care 55 (1): 81-97, 2001 Spring. [PUBMED Abstract]
12. Targ EF, Levine EG: The efficacy of a mind-body-spirit group for women with breast cancer: a randomized controlled trial. Gen Hosp Psychiatry 24 (4): 238-48, 2002 Jul-Aug. [PUBMED Abstract]
13. Shaw B, Han JY, Kim E, et al.: Effects of prayer and religious expression within computer support groups on women with breast cancer. Psychooncology 16 (7): 676-87, 2007. [PUBMED Abstract]
179 14. Antle B, Collins WL: The impact of a spirituality-based support group on self- efficacy and well-being of African American breast cancer survivors: a mixed methods design. Social Work and Christianity 36 (3): 286-300, 2009.
15. Cunningham AJ: Group psychological therapy: an integral part of care for cancer patients. Integrative Cancer Therapies 1(1): 67-75, 2002.
16. Cunningham AJ, Edmonds CV, Phillips C, et al.: A prospective, longitudinal study of the relationship of psychological work to duration of survival in patients with metastatic cancer. Psychooncology 9 (4): 323-39, 2000 Jul-Aug. [PUBMED Abstract]
17. Breitbart W: Spirituality and meaning in supportive care: spirituality- and meaning-centered group psychotherapy interventions in advanced cancer. Support Care Cancer 10 (4): 272-80, 2002. [PUBMED Abstract]
18. Cole B, Pargament K: Re-creating your life: a spiritual/psychotherapeutic intervention for people diagnosed with cancer. Psychooncology 8 (5): 395-407, 1999 Sep-Oct. [PUBMED Abstract]
19. Spiegel D, Bloom JR, Kraemer H, et al.: Psychological support for cancer patients. Lancet 2 (8677): 1447, 1989. [PUBMED Abstract]
20. Garland SN, Carlson LE, Cook S, et al.: A non-randomized comparison of mindfulness-based stress reduction and healing arts programs for facilitating post- traumatic growth and spirituality in cancer outpatients. Support Care Cancer 15 (8): 949-61, 2007. [PUBMED Abstract]
Increasing Personal Awareness in Health Care Providers
Spirituality, religion, death, and dying may be experienced by many providers as a taboo subject. The meaning of illness and the possibility of death are often difficult to address.
The assessment resources noted above may be of value in introducing the topic of spiritual concerns, death, and dying to a patient in a supportive manner. In addition, reading clinical accounts by other health care providers can be very helpful. One such example is a qualitative study utilizing an autoethnographic approach to explore
180 spirituality in members of an interdisciplinary palliative care team. Findings from this work yielded a collective spirituality that emerged from the common goals, values, and belonging shared by team members. Reflections of the participants offer insights into patient care for other health care professionals.[1]
References 1. Sinclair S, Raffin S, Pereira J, et al.: Collective soul: the spirituality of an interdisciplinary palliative care team. Palliat Support Care 4 (1): 13-24, 2006. [PUBMED Abstract]
Issues to Consider
Although a considerable number of anecdotal accounts suggest that prayer, meditation, imagery, or other religious activity can have healing power, the empirical evidence is extremely limited and by no means consistent.[1] On the basis of current evidence, it is questionable whether any patient with cancer should be encouraged to seek such resources as a means to healing or to limiting the physical effects of disease. However, the psychological value of support and spiritual well-being is increasingly well documented, and evidence that spiritual distress can have a negative impact on health is growing. Therefore, in exploring these issues with patients or encouraging the use of such resources, health care providers need to frame these resources in terms of self- understanding, clarifying questions of beliefs with an appropriate spiritual or religious leader, or seeking a sense of inner peace or awareness.
References 1. Sloan RP, Bagiella E: Claims about religious involvement and health outcomes. Ann Behav Med 24 (1): 14-21, 2002 Winter. [PUBMED Abstract]
181 Federal Regulations
The Long Term Care Survey” American Health Care Association. F240 PP-77
§483.15 Quality of Life
A facility must care for its residents in a manner and in an environment that promotes maintenance or enhancement or each resident’s quality of life.
The Long Term Care Survey” American Health Care Association. F241 PP-77-81
§483.15(a) Dignity
The facility must promote care for residents in a manner and in an environment that maintains or enhances each resident’s dignity and respect in full recognition of his or her individuality.
182 183 184 185 The Long Term Care Survey” American Health Care Association. F242 PP-81-83
186 §483.15(b) Self-Determination and Participation
A resident has the right to-
(1) Choose activities, schedules, and health care consistent with his or her interests, assessments, and plans of care;
(2) Interact with members of the community both inside and outside the facility; and
(3) Make choices about aspects of his or her life in the facility that are significant to the resident.
187 The Long Term Care Survey” American Health Care Association. F243/244 PP-83-84
§483.15(c) Participation in Resident and Family Groups
188 (4) A resident has the right to organize and participate in resident groups in the facility;
(5) A resident’s family has the right to meet in the facility with the families of other residents in the facility;
(6) The facility must provide a resident or family group, if one exists, with private space;
(7) Staff or visitors may attend meetings at the group’s invitation;
(8) The facility must provide a dedicated staff person responsible for providing assistance and responding to written requests that result form group meetings;
(9) When a resident or family group exists, the facility must listen to the views and act upon the grievances and recommendations of residents and families concerning proposed policy and operational decisions affecting resident care and life in the facility.
189 The Long Term Care Survey” American Health Care Association. F245 PP-85
§483.15(d) Participation in Other Activities
A resident has the right to participate in social, religious, and community activities that do not interfere with the rights of other residents in the facility.
190 The Long Term Care Survey” American Health Care Association. F246 PP-85-88
§483.15(e) Accommodation of Needs
A resident has a right to –
§483.15(e)(1)
Reside and receive services in the facility with reasonable accommodations of individual needs and preferences, except when the health or safety of the individual or other residents would be endangered; or
191 192 193 The Long Term Care Survey” American Health Care Association. F247 PP-89
A resident has a right to –
§483.15(e)(2)
Receive notice before the resident’s room or roommate in the facility is changed.
194 The Long Term Care Survey” American Health Care Association. F248 PP-90-117
§483.15(f) Activities
§483.15(f)(1)
The facility must provide for an ongoing program of activities designed to meet, in accordance with the comprehensive assessment, the interests and the physical, mental, and psychosocial well-being of each resident.
195 196 197 198 199 200 201 202 203 204 205 206 207 208 209 210 211 212 213 214 215 216 217 218 219 220 221 222 The Long Term Care Survey” American Health Care Association. F249 PP-118-123
§483.15(f)(2) The activities program must be directed by a qualified professional who-
(i) Is a qualified therapeutic recreation specialist or an activities professional who-
(A) Is licensed or registered, if applicable, by the State in which practicing; and
223 (B) Is eligible for certification as a therapeutic recreation specialist or as an activities professional by a recognized accredited body on or after October 1, 1990; or
(ii) Has 2 years of experience in a social or recreational program within the last 5 years, 1 of which was full-time in a patient activities program in a health care setting; or
(iii) Is a qualified occupational therapist or occupational therapy assistant; or
(iv) Has completed a training course approved by the State.
224 225 226 227 228 229 The Long Term Care Survey” American Health Care Association. F250 PP-124-128
§483.15(g) Social Services
§483.15(g)(1)
The facility must provide medically-related social services to attain or maintain the highest practicable physical, mental, and psychosocial well-being of each resident.
230 231 232 233 234 The Long Term Care Survey” American Health Care Association. F251 PP-129
§483.15(g)(2) and (3)
(2) A facility with more than 120 beds must employ a qualified social worker on a full- time basis.
(3) Qualifications of a social worker. A qualified social worker is an individual with-
(v) A bachelor’s degree in social work or a bachelor’s degree in a human services field including but not limited to sociology, special education, rehabilitation counseling, and psychology; and
(vi) One year of supervised social work experience in a health care setting working directly with individuals.
235 The Long Term Care Survey” American Health Care Association. F252 PP-130-133
§483.15(h) Environment
The facility must provide –
§483.15(h)(1)
A safe, clean, comfortable and homelike environment, allowing the resident to use his or her personal belongings to the extent possible;
236 237 238 References
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