SOC313 Family Document Throughout this class, we will meet two families, the Maldonado’s and the Olson’s. The two families are considered extended family via Sarah and Joe Miller. We will learn about their relationships, work environments, and the psychosocial effects related to health challenges faced by each family. You will use this document for the discussions and written assignments. We begin with the Maldonado family. Manny and Donna Maldonado have been married for 42 years. Manny is age 65 and Donna is 63. Sarah, Mike and Becky are the children of Manny and Donna Maldonado. Sarah is the eldest daughter, followed by her brother, Mike, and her sister, Becky.   Manny is Hispanic American and owns a 20,000-acre produce farm that has been in his family for three generations. Although Manny speaks and understands some English, he prefers to speak Spanish. This creates a language barrier between Manny and other family members who do not speak Spanish. Donna is fluent in Spanish, having learned the language from Manny and his family. Donna works on the farm with her husband. She has long suffered from mood swings, which is mostly frustrating to Manny. He says it is “brujeria,” meaning her moods are caused by witchcraft and “mal d ojo” or “evil eye.” He believes someone put a spell on Donna. When this is believed to be the case, the person will visit a Curandero (healer) who will perform a healing ritual. o Sarah works as a nurse, and recently took Family Leave of Medical Absence (FMLA) due to her children’s recent issues. o Joe is the President of Illusion Technologies. Joe’s parents are John and Ella Miller. More details about Joe are shared in the Olson family section below.  Lucy, age 20, has a history of severe substance use disorder, along with having been diagnosed with bipolar disorder. In the past two years, Lucy has had four different jobs. o o o She is unable to hold a job long-term. She now works on her grandparent’s produce farm.  Josh, age 17, has been sneaking away with friends, smoking marijuana and skipping school.  Evan, age 10, was recently diagnosed with leukemia; however, he has not yet started treatments. Even’s doctors have recommended chemotherapy, radiation, and a bone marrow transplant. Sarah and Joe intend to follow this treatment plan. Mike Maldonado is age 36. He currently works for a state University as a tenured faculty of the College of Agriculture and Life Sciences. Mike was recently diagnosed with HIV. Mike and Dan did not have any children. Dan was Mike’s husband. He recently passed away at the age of 38 due to an AIDS-related illness. They were married for 10 years. Becky is age 33. She is divorced and working on the family produce farm as well as attending a local college at night to complete her bachelor’s degree in Child Psychology. She has one child, Abe.  Abe is age 12. He is a good student, but his behavior has changed recently, showing anger and defiance towards both of his parents and several teachers at school. His mother, Becky, has been treating Abe’s behavioral changes with diet and alternative medicines. Next, we will meet the Olson family. Frederic Olson was married to Mary Olson. Mary passed away 10 years ago at the age of 77. Frederic is age 87. Ella is the only child of Frederic and Mary Olson.   Fredric has pronounced symptoms from Parkinson’s disease. He has tremors and balance problems, along with muscle stiffness and gait (manor of walking) changes. He struggles to begin any movement. However, once he is moving, he cannot stop easily. His gait has changed to smaller steps and shuffling. As he progresses through the stages of the disease, Frederic needs increasing assistance with his activities of daily living (ADLs), which entails bathing, dressing, food preparation, eating, taking medications, et cetera. He recently moved to an Assisted Living community and only leaves the facility for medical appointments. The family visits Grandpa Frederic on an alternating schedule at his new home every week. The Assisted Living community has regularly scheduled social events in which Grandpa Frederic actively participates. o Ella is married to John Miller. Ella and John are both 70 years old. John and Manny Maldonado became best friends when John married Ella. Ella and Manny grew up together on their neighboring farms. Ella and John recently sold their 10,000-acre farm to the Maldonado family since the two farms were adjacent to each other. o Ella has been trying to heal herself from breast cancer using a variety of natural means. She grew up on a farm and was accustomed to using home remedies. Therefore, Ella is not willing to utilize Western medicine practices. o While the alternative health care methods kept Ella in remission for a few years, recently she learned the cancer has returned. In addition, the cancer has metastasized to her lungs and bones. Ella has chosen to forego Western medical treatment options such as chemotherapy, radiation, and pharmacological breast cancer treatment medications. She has requested to live out her last days at home. Ella has agreed to be admitted to Hospice home care, with John as her primary caregiver. Ella and John are seeking quality palliative end of life care. o John, Ella’s husband, is of Native American origin. He is well educated and uses Western medicine, but relies heavily on Native American methods, such as meditation and banishing bad spirits from their home. o John is an attorney for the Maldonado produce farm and his son’s company, Illusion Technologies. o John and Ella’s children are Sam, age 50, Lila, age 45, and Joe, age 43.  Sam is divorced and has no children. He works as a foreman on the Maldonado produce farm. He is an alcoholic and has been diagnosed with severe substance use disorder due to his alcohol addiction. His alcohol use is affecting his position as the foreman. Over the past few months, he has experienced emotional outbursts, missed work, and started arguments with the workers, third-party wholesalers, and Al Goldberg (Olson family). Sam has been upset that his parents sold the family farm to the Maldonado family instead of passing it down to him.     Lila, age 47, is married to Al Goldberg. She is a Social Worker for the state. Her job is very stressful as her caseload includes at-risk children. There is a great deal of documentation required; therefore, she works many 10 to 12 hour days. Lila is overweight and has Type II diabetes. She has not controlled her weight or diabetes well. Recently, her doctor changed her medication. She is now taking daily insulin injections to help manage her diabetes. Al, age 47, Lila’s husband, is the general manager of the Maldonado family produce farm. Al had first option for buying the Olson family farm. He opted out of purchasing the farm and agreed with the sale to the Maldonado family. He has no known health issues; however, due to an early childhood trauma, he is afraid of hospitals and funeral homes.  Alisha is Lila and Al’s only child. She is 20 years old and is currently attending college full time on a nursing scholarship. The college campus is an hour away from her parent’s home. She lives on campus in the dorms, does not work at this time, and has no known health problems. Joe, who is Sarah (from the Maldonado family) Miller’s husband, is the President of Illusion Technologies, a rapidly growing company with 50 employees. He has a patent pending on two security-based software programs that could be worth millions. He and his father are in negotiations to purchase land to build a state-of-the-art office building. Sarah, Joe’s wife, is a nurse and recently took a Family Medical Leave of Absence (FMLA) due to the health and behavioral problems with her children. Details about Joe and Sara’s children are shared in the Maldonado family section. The family members share a long history of friendship and love of farming. They have shared many life events, such as holidays, births, and deaths. Their families have been intertwined for generations through the raising of the children and grandchildren. For the most part, the families get along well. However, even though they share some of the same cultural traditions and backgrounds, they do clash from time to time. For instance, some of the Olson family members are not in full agreement with Ella’s use of home remedies and alternative treatments for her breast cancer. However, the Maldonado family understands and supports her choices. Further, Ella is encouraging Sarah Miller and Mike Maldonado to pursue Complementary and Alternative Medicine (CAM) to treat Evan’s leukemia and Mike’s HIV. The members of both families are dealing with very busy schedules and major health challenges. 9 Cancer .Holly Anissa Photography/Flickr/Getty Images Learning Objectives Juice Images/SuperStock 1. Understand how cancer is related to cell division 2. Distinguish between a risk factor and a cause and identify some of the leading risk factors for cancer 3. Understand how social factors have contributed to changing patterns of mortality and morbidity for cancer 4. Understand the pros and cons of screening for various types of common cancers 5. Discuss the most widely used treatment approaches for cancer and their side effects 6. Describe how cancer affects different individual, familial, and social domains 7. Understand aspects of cancer diagnoses during different stages of life and the common characteristics of Survivor Care Plans 8. Consider the effects of larger ethical and policy issues about cancer atL80953_09_c09.indd 279 12/5/13 1:44 PM Section 9.1 Introduction to Cancer CHAPTER 9 9.1 Introduction to Cancer C ancer is not one disease, but many. In fact, cancers take their names either from the organ in the body in which they originated (e.g., colon cancer originates in the colon, breast cancer, in the breast) or from the bodily system that is affected (leukemia is a blood-related cancer; National Cancer Institute [NCI], 2013c). All these diseases, however, possess the common attribute of abnormal cell division. Cells constitute the basic unit of life within the human body, and in cancer, cells do not function the way that healthy cells do. Normally, cells grow and divide as a way to keep the body healthy; this process, however, can sometimes become disrupted when old cells do not die or new cells form that the body does not need. These extra cells form a mass of tissue called a tumor, which itself interferes with the functioning of surrounding tissues. Tumors can be either benign (i.e., they do not spread beyond their point of origin) or malignant (i.e., they are composed of cells that can invade other tissues and destroy them). If a cancer spreads from one part of the body to another, this process is called metastasis. Even if a tumor has metastasized to another organ, the type of cancer is still that of the original malignancy (e.g., kidney cancer cells that have spread to the lungs). Widely spreading cancer will destroy ever larger numbers of healthy cells and eventually lead to disability and the death of the patient. Determining how far the cancer has spread is known as staging. Although clinicians use more than one system for measuring a cancer’s stage, the most common is the TNM staging system: T refers to the size of the tumor, N refers to whether the cancer has spread to nearby lymph nodes, and M refers to whether the cancer has metastasized to other bodily organs. The results of these three factors are then assigned an aggregate Roman numeral (usually I to IV); if the assigned Roman numeral is low, then the cancer has not spread far, or is still in situ (in its place of origin; American Cancer Society [ACS], n.d.-a). See Tables 9.1 and 9.2 for a breakdown of terms. Table 9.1: TNM staging system for cancer Primary Tumor (T) TX: Primary tumor cannot be evaluated T0: No evidence of primary tumor Tis: Carcinoma in situ (CIS; abnormal cells are present but have not spread to neighboring tissue; although not cancer, CIS may become cancer and is sometimes called preinvasive cancer) T1, T2, T3, T4: Size or extent of the primary tumor Regional Lymph Nodes (N) NX: Regional lymph nodes cannot be evaluated N0: No regional lymph node involvement N1, N2, N3: Degree of regional lymph node involvement (number and location of lymph nodes) Distant Metastasis (M) MX: Distant metastasis cannot be evaluated M0: No distant metastasis M1: Distant metastasis is present atL80953_09_c09.indd 280 12/5/13 1:44 PM CHAPTER 9 Section 9.2 Risk Factors Table 9.2: Stages of cancer in the TNM system Stage Definition Stage 0 Carcinoma in situ Stage I, Stage II, and Stage III Higher numbers indicate more extensive disease: Larger tumor size or spread of the cancer beyond the organ in which it first developed to nearby lymph nodes or tissues or organs adjacent to the location of the primary tumor Stage IV The cancer has spread to distant tissues or organs 9.2 Risk Factors B ecause so many different types of cancer exist, it is difficult to pinpoint a particular cause (etiology) of the disease. However, extensive biomedical research has established the many characteristics (known as risk factors) that enhance an individual’s probability of developing the disease. Risk factors can be either genetic (i.e., the product of genetic history; beyond individual control), behavioral (i.e., the result of a person’s lifestyle), or environmental (e.g., related to toxin exposure, such as mesothelioma related to asbestos). Offsetting these are “prevention factors”: behaviors that decrease the likelihood of contracting cancer. As reported by the NCI, the following factors are known to increase the chances of developing cancer: • • • • cigarette smoking and tobacco use, infections, radiation, and immunosuppressive medicines In addition, the risk of cancer can be affected by diet, alcohol consumption, physical activity, obesity, and the environment (NCI, 2013b). Whereas many risk factors are behavioral (e.g., diet, alcohol or tobacco use, physical activity), genetic risk factors for cancer also play a role. For instance, women with the BRCA1 and BRCA2 genes are at higher risk because mutations that occur in either of these genes increase a woman’s risk of developing breast cancer (ACS, 2013a). Also, some cancers can develop after being exposed to a virus—such as the human papillomavirus, which increases the risk for cancer of the cervix, penis, vagina, anus, and oropharynx (NCI, 2013b). Many behavioral risk factors can increase the likelihood for cancer because of the so-called interaction effect. For instance, smoking and drinking alcohol are each independent risk factors for throat cancer. That is, anyone who engages in either one of these activities is at higher risk for developing throat cancer than a person who does not engage in these activities. However, individuals who both smoke and drink are at a higher risk for throat cancer than individuals who engage in only one of these risk-related activities: There is an “interaction” between the two factors that increases the chances of contracting the disease. (For more on this example and graphical representations of interaction effects, see http://glimo .vub.ac.be/downloads/interaction.htm.) Similarly, the consumption of fruits and nonstarchy atL80953_09_c09.indd 281 12/5/13 1:44 PM Section 9.3 A Multifactorial Model of Chronic Disease CHAPTER 9 vegetables might protect against certain types of cancer (e.g., mouth, esophagus, and stomach; NCI, 2013b). But this type of diet is also effective at maintaining a healthy weight (i.e., preventing obesity), which is a protective factor for heart disease as well as some types of cancer. This would be an instance of an interaction effect among protective factors reinforcing one another. In many instances, the level of an activity determines whether it is a risk factor; that is, the dose makes it toxic. For instance, alcohol in moderation (no more than one to two drinks per day) may actually promote health, because red wine contains the antioxidant compound resveratrol, which may help prevent heart disease (Szmitko & Verma, 2005). However, quantities of alcohol larger than this put a person at risk for various types of cancer (liver, oral, etc.; NCI, 2013b). The notable exception is tobacco use: Because of the carcinogens in tobacco products, the risk for developing cancer increases regardless of the level at which tobacco products are used. 9.3 A Multifactorial Model of Chronic Disease I n contrast to the specific causation (pathogen) of acute infectious diseases, chronic conditions such as cancer often take years to develop and result from multiple factors. This theoretical insight about chronic conditions was notably developed from research studies in the 1950s and 1960s on the connection between cigarette smoking and lung cancer. Based on epidemiological studies in this period, the U.S. surgeon general issued a report in 1964 arguing for a causal association between smoking and cancer. In the following year, the British medical statistician Austin Bradford Hill (1965) cited these studies in a famous article, “The Environment and Disease: Association or Causation?” He wanted to articulate criteria that could be used to aid medical judgment when determining the cause of chronic disease. Although Hill cautioned that “none of these nine viewpoints can bring indisputable evidence for or against a cause and effect hypothesis” (p. 299), his criteria have come to be viewed as useful tools when trying to determine whether an observed association indicates a deeper causal connection. The Bradford Hill criteria are set forth in Table 9.3 with examples Hill provided. Table 9.3: The Bradford Hill criteria Hill criteria Example cited Strength of association “The mortality of chimney sweeps from scrotal cancer was some 200 times that of workers who were not specially exposed to tar or mineral oils and in the 18th century.” Temporality “Which is the cart and which is the horse?” e.g., “Does a particular diet lead to disease or do the early stages of the disease lead to those particular dietetic habits?” Consistency “Has it been repeatedly observed by different persons, in different places, circumstances and times?” Theoretical plausibility “It will be helpful if the causation we suspect is biologically plausible. [This] depends upon the biological knowledge of the day.” (continued) atL80953_09_c09.indd 282 12/5/13 1:44 PM Section 9.4 The Changing Epidemiology of Cancer CHAPTER 9 Table 9.3: The Bradford Hill criteria (continued) Hill criteria Example cited Coherence “The cause-and-effect interpretation of our data should not seriously conflict with the generally known facts of the natural history and biology of the disease.” Specificity “If . . . the association is limited to specific workers and to particular sites and types of disease and there is no association between the work and other modes of dying, then clearly that is a strong argument in favor of causation.” Dose-response relationship (biological gradient) “The fact that the death rate from cancer of the lung rises linearly with the number of cigarettes smoked daily, adds a very great deal to the simpler evidence that cigarette smokers have a higher death rate than non-smokers.” Experimental evidence “The dust in the workshop is reduced, lubricating oils are changed, persons stop smoking cigarettes. Is the frequency of the associated events affected?” Analogy “With the effects of thalidomide and rubella before us, we would surely be ready to accept slighter but similar evidence with another drug or another viral disease in pregnancy.” Source: Hill, A. B. (1965). The environment and disease: Association or causation? Proceedings of the Royal Society of Medicine, 58, 295–300. Retrieved from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1898525/pdf/procrsmed00196-0010.pdf These criteria were shown to be present in cigarette smokers who later developed lung cancer. For example, those who smoked more cigarettes contracted cancer more frequently than those who smoked fewer or no cigarettes: That is, there was a “dose–response” relationship. By highlighting the role of behavioral factors (smoking) in causing such diseases as cancer, Hill implicitly highlighted the relevance of “psychosocial” considerations, even though he did not use this particular terminology. 9.4 The Changing Epidemiology of Cancer B ecause the risk of cancer changes in relation to behavioral and environmental factors, different types of cancer become more prevalent over time. This changing epidemiology is vividly illustrated in Figure 9.1. For a complete picture of current cancer statistics, download the ACS Cancer Facts & Figures for 2013 (http://www.cancer.org/acs/groups/content/,epidemiology surveilance/documents/document/acspc-036845.pdf). atL80953_09_c09.indd 283 12/5/13 1:44 PM CHAPTER 9 Section 9.4 The Changing Epidemiology of Cancer Figure 9.1(A): Cancer death rates by gender: Age-adjusted cancer death rates for males, 1930–2009 Cancer is one of the leading causes of chronic disease in the United States but, over time, different types of cancer have been more prevalent than others. 100 Rate per 100,000 male population Lung & Bronchus 80 60 Stomach Prostate 40 Colon & Rectum 20 Liver 0 1930 1935 Pancreas Leukemia 1940 1945 1950 1955 1960 1965 1970 1975 1980 1985 1990 1995 2000 2005 2010 Year * Per 100,000, age adjusted to the 2000 US standard population. Note: Due to changes in ICD coding, numerator information has changed over time. Rates of cancer of the liver, lung and bronchus, and colon and rectum, are affected by these coding changes. Figure 9.1(B): Cancer death rates by gender: Age-adjusted cancer death rates for females, 1930–2009 Rate per 100,000 female population 100 80 60 Lung & Bronchus 40 20 Colon & Rectum Uterus** Stomach Pancreas Ovary 0 1930 1935 1940 1945 Breast 1950 1955 1960 1965 1970 1975 1980 1985 1990 1995 2000 2005 2010 Year * Per 100,000, age adjusted to the 2000 US standard population. ** Uterus refers to uterine cervix and uterine corpus combined. Note: Due to changes in ICD coding, numerator information has changed over time. Rates of cancer of the liver, lung and bronchus, colon and rectum, and ovary are affected by these coding changes. Source: ACS Cancer Facts & Figures 2013. Copyright © 2013 American Cancer Society, Inc., Surveillance Research. Retrieved from http://www.cancer.org/ acs/groups/content/@epidemiologysurveilance/documents/document/acspc-036845.pdf. Used by permission. atL80953_09_c09.indd 284 12/5/13 1:44 PM Section 9.4 The Changing Epidemiology of Cancer CHAPTER 9 As can be seen in Figure 9.1(A), the male age-adjusted mortality rates for cancer of the colon and rectum, prostate, pancreas, and liver, as well as leukemia have remained comparatively constant over the 70 years from 1930 to 2000. By contrast, stomach cancer has precipitously declined from having the highest mortality rate in 1930 to the lowest mortality rate (among the cancers shown) in 2000. Conversely, cancer of the lung and bronchus had one of the lowest death rates in 1930 but had significantly outpaced all the others by the latter half of the 20th century. The number of deaths from these cancers peaked around 1980. The stomach cancer and lung cancer graphs track the emergence of refrigeration and other food preservation techniques and the rise of cigarette smoking (a particularly effective means of bringing carcinogens to the lungs), respectively, within 20th century American society. The rates for women (Figure 9.1[B]) did not rise and fall as dramatically as they did for men. In part, this gender-based difference in mortality may reflect the tobacco industry’s marketing strategies over the course of the 20th century. In the first decades of the century, the industry marketed its product almost exclusively to males (95%; NCI, 2008). By the 1950s, one of the industry’s most successful marketing campaigns visually associated smoking with the rugged masculinity of the cowboy in the person of the “Marlboro Man” (National Public Radio [NPR], 2002). But in the 1920s, the industry began marketing cigarettes to women; at this time, many of the ads subtly associated smoking with physical beauty and sexual attractiveness (Brandt, 2007). As Brandt showed (2007), the rise of the cigarette is fundamentally a story of successful mass-marketing. About two decades passed before women were sought as potential customers; this time lag might explain the slower rise of lung cancer deaths in women relative to men. In the United States, cancer has become one of the leading causes of chronic disease within contemporary society. Today, one in three women and one in two men will develop cancer during his or her lifetime (Siegel et al., 2012). On January 1, 2012, an estimated 13.7 million Americans had a history of cancer; by 2022, this figure is estimated to increase to 18 million. Among men in 2012, the leading types of cancer were prostate (43%), colon and rectum (9%), and melanoma or skin cancer (7%). Among women in 2012, the leading types of cancer were breast (41%), uterine corpus (8%), and colon and rectum (8%). By age, 45% of current cancer survivors are 70 years old or older, whereas only 5% are younger than 40 (Siegel et al., 2012). These prevalence figures confirm that cancer is still generally a degenerative disease of aging. Paradoxically, the ascendancy of these types of diseases has resulted from earlier successes at eliminating acute infectious disease as a leading cause of mortality—a phenomenon that has been characterized as the epidemiological transition (Omran, 1971; see Chapter 2 for further discussion). Increasing life expectancy has also contributed to the epidemiological transition. Web Field Trip View the gallery from “The Cigarette Century” online to learn more about early cigarette advertisements (http://cigarettecentury.com/gallery.html). Consider the overt messages the cigarette companies are trying to communicate about smoking and evaluate how the ads target men and women as separate consumers. Then listen to the NPR broadcast about the history of the Marlboro Man (http:// www.npr.org/programs/morning/features/patc/marlboroman/). Critical Thinking Questions 1. How did the image of the Marlboro Man crafted by advertisers influence usage? 2. How has the image of smoking changed in the 21st century? atL80953_09_c09.indd 285 12/5/13 1:44 PM Section 9.5 Screening CHAPTER 9 9.5 Screening A s noted, it is much more difficult to treat late-stage cancer than cancer that has not spread outside its original site. One major way of preventing the spread of cancer is to screen for early detection. Recommendations Screening is recommended not only for those who have had cancer but also for asymptomatic groups who are at risk for developing cancer because of family history, environmental exposure, and other factors. The medical community believes that if cancer is detected before symptoms emerge, it is usually at an earlier stage when it can be more effectively treated. Because age is a risk factor for many types of cancer, many screening tests are recommended for the general population when individuals reach specific age thresholds. After screening begins, those individuals should be screened at regular intervals, with the length between tests varying according to the type of cancer and whether results from earlier tests have been normal. Among the current recommendations from the ACS are the following: Women should have an annual mammogram (an x-ray of the breast) to screen for breast cancer beginning at age 40; women should have a Pap test to screen for cervical cancer beginning at age 21; men and women should undergo colorectal screening (e.g., a colonoscopy) beginning at age 50; and men should discuss with their physician whether to have a blood test to screen for prostate cancer at age 50 (or age 45 if they have another risk factor; R. A. Smith, Brooks, Cokkinides, Saslow, & Brawley, 2013). At the micro level, standardized recommendations help the individual (in consultation with a primary care physician) determine whether particular screening tests are appropriate. At the meso level, these recommendations can help employers determine which types of screening procedures to include in health insurance policies they offer to their employees. At the macro level, the recommendations of various scientific associations help shape research priorities and formulate public health policy. Risks and Benefits Although the benefits of screening seem straightforward, the practice has generated controversy at the policy level, especially for cancers such as prostate, which can be slow growing and often appear in older men. In this cancer, the appropriate clinical course of action can be problematic, because in many instances the treatment can be worse (causing more adverse effects) than the disease. Treatments for prostate cancer can lead to impotence and incontinence. These adverse effects have to be weighed against a strategy of active surveillance (sometimes called “watchful waiting”), in which the cancer is monitored but not treated. Because prostate cancer can be very slow growing, some studies have found no significant difference (i.e., no reduced mortality) between those who were treated as a result of screening and those who were not. In fact, many men diagnosed with prostate cancer actually lived long enough to die of other conditions. Also, common screening tests can produce false-positives, that is, an abnormal result can appear even when there is no cancer (but perhaps merely an enlarged prostate). On the other hand, prostate cancer is still the second leading cause of cancer deaths (10%) among men (after lung cancer, at 28%; ACS, 2013c), and often, treatment is justified. Based on a literature atL80953_09_c09.indd 286 12/5/13 1:44 PM Section 9.6 Treatment Approaches CHAPTER 9 review of clinical trials and evidence-based guidelines, Gomella et al. (2011) determined that “no standard of care exists for prostate cancer screening today” and that “until there is agreement in guidelines between major professional organizations who have weighed in on this topic, patients and physicians should be . . . engaging in shared and informed decision process concerning screening for prostate cancer” (p. 5875). Similar risk–benefit considerations are shaping contemporary medical debate regarding when a woman should undergo a mammography. In November 2009, the U.S. Preventive Services Task Force recommended against the routine screening of women ages 40 to 49 and biennial screening for women ages 50 to 74. Although this recommendation differed from that of the ACS, one recent study indicated no decrease in mammography among women in their 40s (Pace, He, & Keating, 2013). This difference may indicate that women’s individual perception of risk (the micro perspective) may be at odds with many population-based empirical studies (the macro perspective). Ideally, recommendations such as those produced annually by the ACS would be enough to inform decision making at the micro, meso, and macro levels. However, the controversy continues over whether to give more credence to scientific evidence or whether more screening is better. Web Field Trip Recently, the U.S. Preventive Health Task Force and the American College of Obstetricians and Gynecologists scaled back their recommendations for routine testing for cervical and breast cancer. Read The New York Times article “Screening Debate Reveals Culture Clash in Medicine” (http://www.nytimes .com/2009/11/20/health/20assess.html), which provides information about the controversy. Critical Thinking Questions 1. If you were a primary care physician, how would you advise patients of the risks and benefits of early detection? About the risks of overtreatment? 2. How do these new findings affect patients from a micro, meso, and macro level in terms of health care? 9.6 Treatment Approaches T he many treatment approaches to cancer all share the goal of removing or containing the tumorous tissue, ideally before it has metastasized to other parts of the body. For this reason, early detection is crucial. Surgery Among the most common approaches to cancer treatment are surgery, chemotherapy, and radiation. Surgery, in which the surgeon makes an incision and removes cancerous and surrounding tissue, is the oldest type of cancer therapy. However, surgery can also be used for diagnosis by removing tissue for biopsy to determine whether cancer is present. Surgery can also be preventive, to remove tissue that might become cancerous in the future. atL80953_09_c09.indd 287 12/5/13 1:44 PM Section 9.6 Treatment Approaches CHAPTER 9 Chemotherapy Chemotherapy (also known as “chemo”), a treatment approach available since the 1950s, requires that the patient receive powerful cytotoxic drugs (often intravenously) that kill cancer cells and other rapidly growing cells. Although often effective at stopping or slowing the growth of cancer cells, the therapy also kills healthy cells, producing side effects such as fatigue, nausea and vomiting, hair loss, neuropathy, “brain fog” (or a lack of mental clarity), and low blood counts. Radiation Radiation therapy (also known as external beam radiation) directs radiation at the specific body part that contains the cancerous cells and uses highenergy particles to destroy those cells. Although obviously most effective when the cancer is localized, radiation therapy can also be combined with chemotherapy, which is systemic (affecting a patient’s entire body). The side effects of radiation include fatigue, loss of appetite, and, if the radiation is directed at the head, hair loss (ACS, n.d.-b). BSIP/UIG/Universal Images Group/Getty Images Chemotherapy treatment involves the patient receiving powerful cytotoxic drugs, often intravenously. Targeted Therapies Although surgery, chemotherapy, and radiation (and hormonal therapy for certain cancers) have long been standard treatment approaches, recent research developments have shown considerable promise. One of the most notable is targeted therapy, which relies on the knowledge that has developed over the past several decades about how cancer cells differ from normal human cells. The therapy is then “targeted” to attack only those cells with these genetic abnormalities (Breast Cancer Research Foundation, 2012). Other options include immunotherapy to strengthen the individual’s immune system to destroy cancer cells, hormone therapy (for cancers of the prostate, ovaries, and other sex organs) to keep the cancer cells from growing, and angiogenesis inhibitors, which reduce the blood supply going to the tumor. For patients whose cancer affects their blood cells, blood transfusions and bone marrow transplants can increase the production of healthy cells (Falvo, 2009). Physicians sometimes refer to cancer as being “cured” if the patient shows no evidence of cancer returning for 5 years after treatment. However, another widely used phrase is to say that the cancer is in remission, which refers to the biological state in which the signs or symptoms of cancer are either no longer present (complete remission) or are at a reduced level (partial remission); even so, the body may still harbor cancer cells. Whether the word remission or cure is used, a major goal after treatment is to continue closely monitoring the patient to minimize the risk of the cancer returning. atL80953_09_c09.indd 288 12/5/13 1:44 PM Section 9.7 Using Bronfenbrenner’s Model to Better Understand Cancer CHAPTER 9 Web Field Trip Targeted therapies act on the genes and proteins of specific cancer cells. Unlike some other cancer treatments, targeted therapies do not damage other cells in the body. Visit the Breast Cancer Research Foundation’s website and view a short video about targeted therapies for cancer (http://bcrfcure .healthology.com/breast-cancer/breast-cancer-treatment/breast-cancer-chemotherapy/video3556. htm). Critical Thinking Questions 1. How do you think these emerging therapies will improve quality of life for cancer patients? 2. What are some of the most significant improvements they represent over traditional cancer therapies? 9.7 U  sing Bronfenbrenner’s Model to Better Understand Cancer W e now focus our discussion on how the experience of having cancer can be viewed through Bronfenbrenner’s human ecological model (see Chapter 1 for an overview). At the micro level, the individual patient and the immediate family experience psychosocial difficulties and need support, making cancer a “familial” disease. Cancer presents opportunities and challenges in the school and work environments (at the meso level). And, from a macro perspective, being diagnosed with cancer embeds that individual within a national network that tracks cancer and funds research to find treatments. Micro Perspectives As Holland described, how individuals cope with having cancer can be broken down into four stages. In the first stage, when the initial symptoms of cancer develop, the individual may respond with anxiety. This reaction can lead either to seeking medical attention or to its opposite: denying the symptoms and avoiding seeing a physician. In the second stage, the cancer diagnosis is made, and the individual responds with either distress, or a determination to seek treatment. In the third stage, the patient may experience a sense of empowerment if the disease is being successfully managed, or alternatively, a sense of hopelessness. In the fourth stage, when the individual is in remission (apparently free of cancer), he or she may feel a greater sense of confidence about the future, coupled with a sense of uncertainty about the cancer returning (as cited in Falvo, 2009, pp. 567–568). As Holland’s framework suggests, an individual’s personal response to cancer can take two general forms: either a proactive stance of “fighting cancer” or feelings of helpless distress. The latter response appears to be common; most studies indicate that 50% of cancer patients respond in a psychologically disordered way (Wein, Sulkes, & Stemmer, 2010). In their review of such psychological issues, Wein et al. emphasized that depression, anxiety, and demoralization are possible responses in patients to a cancer diagnosis. As they observed, the medical literature indicates that up to 25% of cancer patients also meet the clinical criteria for depression. Although multiple atL80953_09_c09.indd 289 12/5/13 1:44 PM Section 9.7 Using Bronfenbrenner’s Model to Better Understand Cancer CHAPTER 9 criteria are used to diagnose depression, the primary features are a dejected mood and a loss of interest in what had been pleasurable activities (Wein et al., 2010). Wein et al. noted that although not as prevalent as depression, 10% to 30% of cancer patients experience anxiety disorder. In contrast to the state of mind that characterizes depression, anxiety has a more neurological and physiological basis. Wein et al. (2010) characterized the anxiety state as “activation of the automatic nervous system; restless and irritable behavior; acute stress with nightmares, sleep disturbance, and intrusive thoughts; worries that cannot be rationally allayed; panic attacks; and a discrete sense of doom” (p. 496). They went on to define demoralization as “existential despair, hopelessness, helplessness, and loss of meaning and purpose in life” (p. 497). They contrasted this state with depression, which “involves loss of pleasure in the present whereas the demoralized can laugh and smile in the present but cannot anticipate a worthwhile future” (p. 497). To treat these psychological conditions in cancer patients, Wein et al. (2010) specifically recommended both psychological and pharmacological therapies, depending on the condition diagnosed. But their more general recommendation is that oncologists (and by extension, any health care provider dealing with cancer patients) should treat the psychological distress as well as the underlying disease pathology. In recommending this interdiscriplinary approach, they wrote that doctors should be “psychoeducators” about serious disease and death as a way to build empathy—not only with the patient but also with the patient’s family. To that end, they recommended regular meetings of the entire interdisciplinary treatment team, including the primary physician and the family, as a way to minimize stress. Finally, they recommended that physicians develop the requisite communication skills for counseling patients about the psychological stresses that result from a cancer diagnosis. Better communication skills should also help physicians correctly diagnose psychological disorders in patients. Wein et al. argued that, ultimately, this biopsychosocial approach is crucial for dealing with cancer patients. As they observed, “Building a trusting relationship with honesty and empathy is better than benzodiazepines [tranquillizers]” (2010, p. 496). At the micro level of human ecology, the cancer patient’s immediate family may also experience psychosocial difficulties. For example, if the cancer requires protracted treatment and has side effects, then individual family members may take on the role of caregiver. This role may entail accompanying the cancer patient for chemotherapy treatment, acting as the patient’s surrogate when talking with the oncologist or cancer care team, and helping the patient attend and engage in rehabilitation after treatment. If the cancer is terminal, then the family inevitably needs to deal with issues of grief, mourning, and bereavement over the loss of a loved one. The impending death of a loved one can also bring unresolved familial problems or conflicts to the fore. All these experiences can produce anxiety for family members. To avoid jeopardizing their own mental health, it is vital that family caregivers take care of their own emotional needs. As the ACS has emphasized, caregivers can minimize the chance they will develop serious depression or other unhealthy reactions by engaging in the following: • • • • • • atL80953_09_c09.indd 290 support from family and friends in caring for the patient exercise a healthy diet spiritual support, such as religious activity, prayer, journaling, or meditation recreational time, when you can enjoy friends socially help from a trained mental health professional (ACS, 2012) 12/5/13 1:44 PM Section 9.7 Using Bronfenbrenner’s Model to Better Understand Cancer CHAPTER 9 Ultimately, cancer is very much a “familial” disease. This holds true not only in the sense that one can inherit a genetic predisposition for certain types of cancer but also in the sense that the stress of dealing with cancer shapes the psychosocial dynamic of the entire family unit. Meso Perspectives In the school and work environments, cancer can present both opportunities and challenges. For pediatric patients, reintegration into the school environment can be extremely beneficial at a psychosocial level, because it introduces an element of normalcy into the child’s life. As one study indicated, teenagers who went back to school were happier than their counterparts who received instruction at home (Searle, Askins, & Bleyer, 2003). Many pediatric oncology centers have designed school reentry programs in which nurses and social workers discuss pediatric cancer at the student’s school so that classmates and teachers understand it before the child returns (Kurtz & Abrams, 2010). For adult cancer survivors, the desire to return to work may stem from both quality-of-life considerations and desire for the financial well-being of themselves and their families. According to a 2005 estimate, the number of cancer survivors who were of working age accounted for over 40% of the 10 million survivors in the United States at that time (Ganz, 2005). In 2012, Siegel et al. (2012) estimated there were 13.7 million Americans who had been diagnosed with cancer and that there would be nearly 18 million survivors by 2022. Assuming that the percentage of these survivors in their productive years holds at 40% of these totals, this would mean that there were approximately 5.5 million working-age cancer survivors in 2012, and that there will be 7.2 million working-age cancer survivors in 2022. Clearly, developing workplace accommodation strategies for these former patients will be an ongoing concern. Based on a literature review of cancer survivors who successfully returned to work, Steiner, Nowels, and Main (2010) identified the following typical themes: 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. Most survivors are able to return to work. Likelihood of work return increases over time. Specific cancer sites have better prognosis for work return. Individuals with a less advanced cancer stage are more likely to return to work. Individuals not receiving chemotherapy or radiation are more likely to return to work. Younger workers are more likely to return. Men are more likely to return to work. Individuals with higher income are more likely to return to work. Individuals with higher education are more likely to return to work. White workers are more likely than racial/ethnic minorities to return to work. Workers with less physically demanding jobs are more likely to return to work. Workers with accommodating employers are more likely to return. Residual work-related disabilities are uncommon in those who return. This list suggests that the ability of survivors to return to work depends on both the biology (the type of cancer and how it is treated) and the nature of the work performed, as well as income level. It also depends on social characteristics, including gender, social class, race and ethnicity, and workplace policies (e.g., accommodations). Biologically, cancers are less likely to inhibit atL80953_09_c09.indd 291 12/5/13 1:44 PM Section 9.7 Using Bronfenbrenner’s Model to Better Understand Cancer CHAPTER 9 future work if they can be treated, primarily through interventions that target specific organs (e.g., surgery or radiation), which seek to remove or destroy only the cancerous cells. For individuals who receive this type of treatment, having cancer can be viewed as more an “acute episode,” even though cancer itself can be a chronic condition (for further discussion of these concepts, see Chapter 2). By contrast, for individuals who require chemotherapy, the common side effects of fatigue, nausea, and vomiting can significantly hinder the ability to return to work as well as worker productivity. As Munir, Yarker, and McDermott (2009) observed, based on a review of the published literature, “chemotherapy has one of the strongest associations with work ability and has been consistently linked to poor work ability in comparison to other treatments in those working during or following cancer treatment, irrespective of cancer type” (p. 383). Further, many low-income minority men and women are diagnosed at a later stage of cancer and thus may need this more aggressive, poorly tolerated treatment. This potential link between receiving chemotherapy and taking longer to return to work can be seen by contrasting survivors of breast and prostate cancer, two highly prevalent cancer diagnoses among women and men, respectively. Regardless of stage, breast cancer patients are more likely to be treated with surgery and some combination of radiotherapy, chemotherapy, or hormone therapy, whereas early-stage prostate cancer patients are more likely to be treated with only surgery and radiotherapy (Bradley, Neumark, Luo, & Schenk, 2007). Correspondingly, one study drawn from a working-age population showed that breast cancer patients were absent an average of 68 days, whereas prostate cancer patients were absent an average of only 40 days (Bradley, Oberst, & Schenk, 2006). Also, the likelihood of returning to work is related to the individual’s type of work, educational level, and income. In general, those with lower levels of formal education are often required to take more physically demanding (manual labor) jobs, whereas those with higher education hold more sedentary (white collar) jobs. Also, people with higher levels of formal education are more likely to work in jobs where flexible schedules may be negotiated or in jobs that permit work from home (telecommuting). Consequently, we might suspect that the physical effects of cancer and its treatment would make it more difficult for those in the former category to return to work, and this has been borne out by empirical studies. One study reported that survivors in physically demanding occupations were 20% less likely to be employed than those without a history of cancer; in contrast, only 7% of those in sedentary occupations were less likely to be employed. Another study indicated that those with postgraduate education were “less likely to stop working than any other educational group” (Amir & Brocky, 2009, p. 376). Ultimately, these studies support the widely documented nexus among income level, education, and health. Even when diagnosed with the serious disease of cancer, those in the higher strata of society tend to “rehabilitate” faster than those at the lower end of the economic ladder. Despite the increasing numbers of cancer survivors in the workplace, the perception of employment discrimination persists. According to a 1997 telephone survey, 40% of the respondents (none of whom had cancer) feared they might lose their job if they received a cancer diagnosis (Hoffman, 2005). In another survey, a larger portion of supervisors similarly doubted whether an individual diagnosed with cancer could adequately perform his or her job; nearly half of those interviewed said that a cancer diagnosis would affect their decision to hire an otherwise qualified applicant (Hoffman, 2005). atL80953_09_c09.indd 292 12/5/13 1:44 PM Section 9.7 Using Bronfenbrenner’s Model to Better Understand Cancer CHAPTER 9 These attitudes reflect earlier, discredited assumptions that a cancer diagnosis is a death sentence. Such attitudes were subtly reflected in the language: In the 1970s, those with positive diagnoses were characterized as cancer victims, and the term cancer survivor usually referred to the surviving spouse of an individual who had died of the disease (Hoffman, 2005). By the 1990s, however, such older attitudes gave way to the newer epidemiological realities of higher survival rates as well as the passage of the Americans with Disabilities Act (ADA) in 1990 (see Chapter 2). Because cancer is a major health problem that potentially limits the ability to perform everyday activities, the ADA covers discrimination against most cancer survivors. That is, even if they have completed treatment, the fact that they have a record of a disability means that an employer cannot discriminate against them based on their medical history. Although subjective attitudes of discrimination remain, legal and policy frameworks have created objective criteria to reflect the reality that cancer is a manageable, chronic condition. Historically, this change in both perception and public policy foreshadowed the transformation in public perception that took place regarding HIV/AIDS patients in the 1980s and 1990s (see Chapter 4 for more detail). Drawing on experiences in the United Kingdom, Munir, Kalawsky, Wallis, and Donaldson-Feilder (2013) developed a guidance tool for cancer patients planning to return to work. They claimed that such an approach is needed, because “in these circumstances, it is often the patients/employees who lose out on the help and support they need to be able to return to work and/or prevent disability” (p. 2). Munir et al. (2013) outlined a six-stage process for developing the guidance tool: 1. 2. 3. 4. 5. 6. assess needs based on a literature review and focus-group discussions; identify intended outcomes and performance objectives; select theory-based methods and practical strategies; develop program components and materials; plan for program adoption and implementation; and create an evaluation plan. The authors emphasized that their approach can empower patients “by encouraging them to take the lead and identify their work-related capabilities and limitations in relation to their diagnosis, prognosis and treatment” (p. 11). Although their model has already been used in the United Kingdom, its utility vis-à-vis other return-to-work initiatives has yet to be tested in a randomized controlled clinical trial. In the United States, the health care situation differs greatly from the United Kingdom, which has a universal, government-run health care system. In the United States, employment is directly linked to the ability to pay for cancer treatment, because employers often provide health insurance to their full-time workers as an employment benefit. Consequently, cancer patients find themselves in a bind. Retaining employment is central to retaining health insurance, which can help avert individual financial catastrophe when faced with the high cost of cancer treatments; however, until the Patient Protection and Affordable Care Act (ACA) was passed in 2009, simply having insurance did not guarantee that cancer treatments were covered. The insurance company could deem cancer a “preexisting condition” and either delay or deny coverage. The ACA prohibits insurance companies from underwriting their policies this way. It forbids insurers from denying coverage based on preexisting conditions. If and when all aspects of the ACA become operational, these employment-related aspects of paying for cancer treatment may become less relevant; however, cancer patients in the United States have historically had to confront these difficult dilemmas. (For an in-depth discussion of the ACA, see Chapter 10.) atL80953_09_c09.indd 293 12/5/13 1:44 PM Section 9.7 Using Bronfenbrenner’s Model to Better Understand Cancer CHAPTER 9 Macro Perspectives From a macro perspective, being diagnosed with cancer embeds an individual within a national network of cancer surveillance entities and nationally funded biomedical research studies, such as clinical trials. In 1992, Congress passed the Cancer Registries Amendment Act, which collects data on each instance of a cancer diagnosis, its type, and how it was initially treated. Administered by the Centers for Disease Control and Prevention (CDC), these data are collected through the National Program of Cancer Registries (NPCR), which supports cancer registries at the state level (CDC, 2013j). When combined with data produced by the NCI, these registries report on cancer incidence (rate of cases per population sample) for 98% of the U.S. population. The results of this ongoing research are published in the Annual Report to the Nation on the Status of Cancer (Jemal et al., 2013). Although coordinated at the national level through the NPCR, cancer cases and cancer deaths are reported to state cancer registries by various medical facilities (e.g., hospitals, physicians’ offices). These state registries have the following functions: • • • • • • monitoring cancer trends over time; determining cancer patterns in various populations; guiding planning and evaluation of cancer control programs (i.e., determining whether prevention, screening, and treatment efforts are making a difference); helping set priorities for allocating health resources; advancing clinical, epidemiological, and health services research; and providing information for a national database of cancer incidence (CDC, 2013j). By providing data on the incidence and prevalence of cancer throughout the United States, the NPCR is building a scientific foundation for public health policy. Because nearly every individual case of cancer will become a part of this database, this project illustrates how cancer has become a national (macro) concern. Cancer is also an integral part of the research agenda of the federal government and its partners. In 1937, Congress created the NCI as the government’s principal agency in charge of cancer research. As its mission statement declares, the NCI: • • • • • • • • • atL80953_09_c09.indd 294 “Supports and coordinates research projects conducted by universities, hospitals, research foundations, and businesses throughout this country and abroad through research grants and cooperative agreements. Conducts research in its own laboratories and clinics. Supports education and training in fundamental sciences and clinical disciplines . . . relating to cancer. . . . Supports research projects in cancer control. Supports a national network of cancer centers. Collaborates with voluntary organizations and other national and foreign institutions engaged in cancer research and training activities. Encourages and coordinates cancer research by industrial concerns . . . Collects and disseminates information on cancer. Supports construction of laboratories, clinics, and related facilities necessary for cancer research through the award of construction grants” (NCI, n.d.-b). 12/5/13 1:44 PM Section 9.7 Using Bronfenbrenner’s Model to Better Understand Cancer CHAPTER 9 One of the most concrete ways that an individual cancer patient can become affiliated with national research is by participating in a clinical trial. These controlled experiments are performed on carefully selected patients, all of whom have the same medical condition—in this case, the same type or subtype of cancer. Clinical trials are conducted because the preliminary research into a new therapy looks promising. However, the therapy must be tried out on a population of actual patients to determine whether these initial promising results were the product of random chance or really indicate therapeutic efficacy. At the outset, study participants are randomly assigned either to a control group (that receives a standard therapy for cancer) or an experimental group (that receives the new therapy). To ensure the random nature of the assignment, computer programs are used and neither the researchers nor the study participants know the group to which an individual patient is assigned (a double-blind design). After the trial has concluded, the researchers analyze the results to see how likely it was that any differences between the two groups could have occurred by random chance. If the differences were unlikely to have occurred by chance, and the experimental therapy is found to be significantly superior to the control therapy, then the drug is well on its way to being approved by the U.S. Food and Drug Administration (FDA) as a new therapy. Further safety testing may be necessary, as well as postmarketing surveillance to see if any other problems emerge in a larger population. As long as the experimental approach differs from the standard approach, clinical trials can take many forms: • • • • • Treatment trials test whether a new therapy is superior to a standard therapy in patients who have already developed cancer; Prevention trials test whether one intervention is more effective than another at lowering the risk of cancer; Screening trials test whether certain tests are more effective than others at detecting cancer in asymptomatic individuals; Diagnostic trials test whether certain tests or procedures diagnose cancer more accurately than others; and Quality-of-life and supportive care trials test whether some interventions produce fewer side effects than others (NCI, 2013a). For the individual cancer patient, clinical trials carry both potential benefits and risks from participating. On the positive side, if the patient ends up being assigned to the group that receives the experimental therapy, then he or she could potentially benefit from it before it becomes available to the general public. (Note that the trial would not have reached the stage of testing on human subjects unless the preliminary results looked promising and safety tests in animals had been completed.) On the negative side, the fact that a clinical trial still needs to be done means that participating carries an inherent risk; to say that a therapy is “experimental” means there is an element of uncertainty about whether it will work, or whether it has potentially harmful side effects that outweigh its benefits. An individual can participate in a clinical trial at a local level in multiple ways. Through the Community Clinical Oncology Program (CCOP), the NCI has established a network of local hospitals that enables doctors in these locations to have their patients participate in NCI-sponsored clinical trials. There is even a Minority-Based Community Clinical Oncology program, which gives members of minority populations the opportunity to participate in cancer clinical trials. Similarly, the NCI Community Cancer Centers Program (NCCCP) enables designated community hospitals throughout the country to participate in cancer research and clinical trials. This program is designed to atL80953_09_c09.indd 295 12/5/13 1:44 PM Section 9.8 Illness and Disability Through the Life Span CHAPTER 9 ensure that underserved populations (e.g., minorities, the elderly) get to participate in clinical trials so that experimental results can be better generalized to the population at large (NCI, 2013a). These community-based cancer clinical trials blend micro, meso, and macro perspectives. At the micro level, they offer potential therapeutic benefits to the individual cancer patient. At the meso level, they inject federal funds for advanced cancer research into local communities and institutions. At the macro level, they lead to greater scientific insights, which in turn provide empirical data that can be used to formulate evidence-based public health interventions to treat and prevent cancer. 9.8 Illness and Disability Through the Life Span A s noted earlier, success in the context of cancer treatment involves bringing the patient to a state of complete remission (hopefully because the cancer has been completely removed from the body). But achieving this biological state does not mean that medical and psychosocial interventions end; rather, there is an ongoing need to screen for recurrent or new cancers, as well as deal with so-called late effects—health problems emerging posttreatment or from the treatment itself. Because cancer patients are increasingly living longer, managing this posttreatment phase has become a major area of concern among health care professionals. Dealing with these issues presents unique challenges for patients at different stages in the life cycle. Children and Adolescents Cancer is rare among children; less than 1% of all cancer diagnoses occur among those younger than 14 years of age. However, it is still the second leading cause of death in children after accidents (Weiner & Simone, 2003). The most common cancers in children are leukemia (34%), brain and central nervous system (CNS) malignancies (27%), and neuroblastoma (7%; Siegel et al., 2012). Although the precise combination of therapies depends on the type of cancer, children are treated with the same therapeutic strategies as adults: surgery, radiation, or chemotherapy. Previously, many cases of pediatric cancer were fatal; today, however, most children diagnosed with cancer survive for many years. In recognition of this progress, some cancer centers have established longterm follow-up clinics, staffed by multidisciplinary teams of health care providers (Kurtz & Abrams, 2010). In addition to psychological difficulties, survivors of childhood cancer face an increased risk of second cancers in the female breast, brain and CNS, bone, thyroid, and soft tissue, as well as melanoma and acute myeloid leukemia (Siegel et al., 2012). Children and adolescents with cancer confront unique psychosocial problems, because the disease imposes additional stress and anxiety beyond the traditional concerns of childhood psychological development. Among school-aged children, there is a strong sense that life is “rule governed,” but the uncertainties brought about by a disease such as cancer seem to contradict this worldview. As Kurtz and Abrams (2010) observed, “it can be frustrating to a child who plays by the rules and follows the doctors’ orders to then face setbacks in treatment despite their best efforts. Helping this age group feel competent in the midst of medical complications can be challenging” (p. 403). Among adolescents, the disease may foster greater dependency on family at precisely the developmental point at which children are striving to assert their independence. For example, the patient may have to be taken to medical appointments by parents even though, as part of normal adolescent rebellion and separation, the teenager may want to associate more with a peer atL80953_09_c09.indd 296 12/5/13 1:44 PM Section 9.8 Illness and Disability Through the Life Span CHAPTER 9 group. Similarly, physical changes from treatment (e.g., hair loss from chemotherapy) may undermine the adolescent’s sense of physical attractiveness—a key concern during a period of developing sexuality (Kurtz & Abrams, 2010). Like adults, children and their families can benefit from an open discussion about death and end-of-life issues. These discussions can often be facilitated by interdisciplinary teams, made up of social workers, psychologists, psychiatrists, and chaplains, for example, who have expertise in these subjects (Kurtz & Abrams, 2010). Young Adults Young adults (e.g., those leaving for college or the first job) are facing important transitions: They must separate from their family of origin, begin to forge a distinct professional identity, and seek to establish intimate relationships. Navigating these transitions can pose additional challenges when someone is also a cancer survivor, especially because empirical evidence shows that those in this age cohort (15–39) have more unmet social service needs than do children and older adults. Using survey data from the NCI’s Adolescent and Young Adult Health Outcomes and Patient Experience study, A. W. Smith et al. (2013) found that 35% of the respondents (172 out of 484) reported at least one unmet social service need. The services not being provided were both physical and psychosocial—such as needing to see a mental health professional, a physical or occupational therapist, a pain management expert, or a spiritual/religious counselor (A. W. Smith et al., 2013). Of these, the authors cited greater access to mental health support services as especially important for aiding young adults in work- and school-related issues. Also, the study found that 9% of the respondents reported an unmet need for some form of rehabilitation service or physical therapy. Such a finding points to a lower overall quality of life in this population. Finally, their study found that unmet needs for both pain management and spiritual counseling were associated with lower overall quality of life (A. W. Smith et al., 2013). Clearly, providing these types of social services in the future would benefit young adult cancer survivors on both the micro and the meso levels, in terms of social interactions and adapting to the institutions and organizations they enter. Adult Cancer Survivors According to the Institute of Medicine (IOM; 2005a), patients diagnosed with cancer in 2005 had a 64% chance of surviving 5 years, compared with a 50% chance of living that long three decades earlier. However, expertise in providing cancer survivorship care has lagged behind advances in cancer treatment proper. To remedy these deficiencies, the IOM (2005b) published a report entitled From Cancer Patient to Cancer Survivor: Lost in Transition. Among its recommendations were the following: • • • • • • atL80953_09_c09.indd 297 Cancer survivorship should be “a distinct phase of cancer care”; Patients completing primary treatment should be provided with a comprehensive care summary (an SCP); Evidence-based clinical practice guidelines, assessment tools, and screening instruments should be developed for posttreatment care; Quality of survivorship care measures should be developed through public or private partnerships; Various federal agencies should support demonstration projects to test models of survivorship care; Health care providers should receive educational training so that they can address health care and quality of life among cancer survivors; 12/5/13 1:44 PM Section 9.8 Illness and Disability Through the Life Span • • CHAPTER 9 Employers and legal advocates should work to eliminate [work-related] discrimination and minimize adverse effects of cancer on employment; and New research on cancer patient follow-up should be supported. One public–private partnership has been NCI’s NCCCP. Launched as a pilot program in 2007, the NCCCP works with local community hospitals to support basic, clinical, and population-based cancer research at the local (meso) level. In July 2012, 21 community hospitals received support to continue in the program, which permits these local entities to interact and to collaborate with nationally focused cancer organizations such as NCI-designated cancer centers, the American Society of Clinical Oncology (ASCO), and more. In this way, the program seeks to integrate treatment with research at the micro, meso, and macro levels. The program has the following goals: 1. Reduce cancer health care disparities (by providing high-quality cancer care to medically underserved patients); 2. Increase patient participation in clinical trials; 3. Improve quality of care at community hospitals; 4. Enhance cancer survivorship and palliative care services; 5. Expand use of electronic health records and cancer data connections; and 6. Collect high-quality biospecimens to support genomically informed research (NCI, n.d.-c). For additional details, watch the video “Voices from the Community” describing the NCCCP (http:// www.youtube.com/watch?v=AG1TCZKP_58). After patients have been put in remission or cured, one hallmark of effective posttreatment management is the Survivor Care Plan (SCP). This document is tailored to the individual cancer patient and designed to facilitate communication among all those involved in the patient’s care (e.g., the oncologist, the primary care physician, nurses, and social workers). As McCabe, Faithfull, Makin, and Wengstrom (2013) observed, this focus on coordinating survivorship services has been adopted by 88% of cancer control plans developed at the state level. Similarly, survivorship management has become a key policy issue for many professional societies (e.g., the ASCO and the ACS). This scheme for coordinating services among all stakeholders is illustrated in the descriptive chart of an SCP in Figure 9.2. atL80953_09_c09.indd 298 12/5/13 1:44 PM CHAPTER 9 Section 9.8 Illness and Disability Through the Life Span Figure 9.2: Critical elements of survivorship care planning The Survivor Care Plan is an effective posttreatment management process for patients who are in remission or cured. Survivorship programs Survivorship care plan components Posttreatment care plan • Posttreatment summary • Advice on screening for new cancers • Surveillance for recurrence • Care coordination strategy with PCPs • Ongoing symptom management • Health promotion 1. Information about timing and content of follow up 2. Identification and management of late and long-term effects 3. Recommendations for healthy living, diet, exercise, and smoking cessation 4. Information about financial benefits and return to work 5. Referral to specialists including psychological and social support 6. Family and caregiver support Multidisciplinary care Focused on the specialist rather than the primary care provider, the key provider in these survivorship models has been the cancer specialty team Integrated care Emphasis on establishing primary care based support for the survivor with the expectation that communication between the oncology team and primary care provider will continue Rehabilitation Enhances recovery after acute illnesses through vocational rehabilitation that promotes return to functional capacity and well being Self management Promotes skills for chronic illness management including problem solving, decision making, making the best use of professionals, and taking action Source: McCabe, M.S., Faithfull, S., Makin, W., & Wengstrom, Y. Survivorship programs and care planning. Cancer, 119(Suppl. 11), 2179–2186. Copyright © John Wiley and Sons. Used by permission. Despite the emerging professional consensus on the utility of SCPs, centers still vary in how far they go to implement them and how much information content they provide. In August 2009, Salz, Oeffinger, McCabe, Layne, and Bach (2012) surveyed all 53 NCI-designated cancer centers to determine whether SCPs were being used for patients with breast or colorectal cancer. Although all 53 institutions responded, only 23 of them (43%) reported using SCPs. All the SCPs included advice on how to monitor for disease recurrence and gave recommendations on screening for other cancers. However, few SCPs described the psychosocial challenges that arise after treatment (e.g., difficulties with sexual functioning and reproduction) or provided other pertinent advice, such as legal and financial (per the IOM recommendations). As the NCI has similarly reported, SCPs are “slow to take hold” (NCI, 2012). atL80953_09_c09.indd 299 12/5/13 1:44 PM Section 9.8 Illness and Disability Through the Life Span CHAPTER 9 The difficulties of implementing SCPs may derive, in part, from the primarily biological focus that informs the practice of oncology. The psychosocial aspects of patients with cancer are dealt with more frequently by primary care physicians, nurses, and social workers. In 2007, the IOM reported that oncologists appear to be focused on one thing only—that is, treating the cancer and ensuring against a recurrence. It was the rare oncology provider who actually talked to his or her cancer patients about their psychosocial needs during their acute or their follow-up treatment (2007, p. 44). Furthermore, the oncologists interviewed were generally reluctant to write up SCPs to give direction posttreatment. They saw it as a time-consuming process that would not be of any monetary benefit to them (i.e., they could not bill insurance for their services). In other words, the bureaucratic and financial realities of running an oncology practice militated against cancer physicians’ completing SCPs, even though the doctors acknowledged that these documents could benefit patients and their primary care providers (IOM, 2007). Because oncologists are the best suited professionals to write the SCPs, incentives are necessary to get cancer doctors to complete the forms. According to the IOM, oncologists might be convinced to complete these forms if pressure were brought to bear: if primary care physicians encourage them to do so, if patient advocacy groups encourage patients to insist they receive an SCP, if medical schools encourage this practice, and if insurance providers are encouraged to reimburse oncology providers. The IOM also recommend that insurance providers as well as Medicare and Medicaid be encouraged to accept the initial summary and updates as proof of service for reimbursement purposes. If physicians adopt electronic medical records, as Medicare is now encouraging through financial incentives, software developers could help them create SCPs with minimal effort (IOM, 2007). Ironically, the lack of focus on the psychosocial aspects of surviving cancer may have resulted partially from the very success of cancer research. By focusing on the genetic basis of cancer growth, cancer research is at the forefront of contemporary genetic medicine. As the current Director of NCI, Harold Varmus (2012), observed, “We are now able to define genetic changes that cause cancer, use them to control cancer with more precise tools, and thereby reduce the Nation’s cancer burden” (p. 4). To stay abreast of these fast-changing scientific developments, however, oncologists have to focus on the biological aspects of the disease. Although this focus may have contributed to greater longevity among cancer patients, it also means that oncologists do not have the time to become as knowledgeable about the psychological issues that living with cancer (or the potential for recurrence) often entails. But cancer survivors and their advocates clearly desire that these psychosocial issues be addressed. As one commentator in an IOM (2005c) video observed, We have been able to treat cancer in a better way such that now 10 million people do live with cancer, then surely we can muster the energy so that we can tend to the quality of life concerns that these people face. atL80953_09_c09.indd 300 12/5/13 1:44 PM CHAPTER 9 Section 9.8 Illness and Disability Through the Life Span Web Field Trip The IOM offers a video, “From Cancer Patient to Cancer Survivor: Lost in Transition,” about the transition from the final cancer treatment to life in remission or without cancer. The video profiles cancer survivors and their daily struggles (http://iom.edu/Reports/2005/From-Cancer-Patient-to-Cancer-Survivor-Lost -in-Transition/From-Cancer-Patient-to-Cancer-Survivor-Lost-In-Transition.aspx). Pay special attention beginning at minute 8:10 for a description of the SCP. Critical Thinking Questions 1. From a meso perspective, what areas of life are these patients struggling with the most? 2. In your opinion, what support systems would help them the most? End of Life Although notable strides have been made in cancer research, treatments, and recovery, a patient’s life can follow many trajectories after a cancer diagnosis. Preparing for death is one possibility, as the schematic diagram in Figure 9.3 shows. Figure 9.3: Cancer care trajectory There are several items to consider when evaluating cancer care and treatment options, and effective communication among the care team and the patient is an essential element of the decision-making process. Survivorship Care Late effects management and surveillance for recurrence and second cancers Treatment with Intent to Cure Diagnosis and Staging Cancer-Free Survival Managed Chronic or Intermittent Disease Recurrence/ Second Cancer Treatment Failure Palliative Treatment Death Source: Hewitt, M., Greenfield, S., Stovall, E. (Eds.). (2005). From cancer patient to cancer survivor. p. 190. Copyright © National Academies Press. Used by permission. atL80953_09_c09.indd 301 12/5/13 1:44 PM Section 9.8 Illness and Disability Through the Life Span CHAPTER 9 Many factors determine the appropriate course of action following a cancer diagnosis, including the patient’s age, the stage at diagnosis, other health problems, the effects of treatment on quality of life, and whether the type of cancer is particularly aggressive. Although the patient’s care team should present the risks and benefits of various treatment scenarios, the ultimate decision should rest with the patient. Ideally, the patient is competent to make this determination; however, for those of advanced age or diminished mental capacity, the decision may devolve to the person (usually a relative) who has medical power of attorney (health care proxy). Alternatively, if the patient has completed an advance directive for health care (living will), it can be used as a basis for determining the appropriate course of action. If the relevant parties decide to adopt a strategy of palliative care (providing comfort and relief of suffering) rather than treatment with intent to cure, then the psychological, clinical, and case management issues associated with endof-life care must be addressed. Lacey and Sanderson (2010) have noted the following major concerns in end-of-life care: • • • • The ethical imperative to provide adequate relief of suffering; That dying patients should not be subjected to ineffectual primary cancer treatment that causes further distress; That all patients have a right to adequate relief of physical and psychological symptoms, and social support; and That all patients have the right to care that enables them to have the best possible life given the constraints of their prevailing circumstance (p. 532). Balancing these imperatives is clearly a difficult task. For example, what concrete acts will ensure adequate relief of suffering while not causing additional distress? However, these areas must be addressed head-on to create a psychosocial environment conducive for a “good death.” For this process to work, effective communication among all members of the health care team and with the patient and family is essential. The treating oncologist must emphasize that although the framework has shifted from treating the disease to providing palliative care, the focus is still on ensuring the patient’s quality of life and dignity. Given this shift in focus, it is generally recommended that nonessential medications be terminated: “An appropriate rule of thumb is to identify and cease any drug that does not contribute in some way to the patient’s immediate comfort” (Lacey & Sanderson, 2010, p. 536). Similarly, it is helpful to the family if all members of the treatment team are of one mind about the prognosis and goals of care (Lacey & Sanderson, 2010). Such uniformity of goals should also inform the palliative care team, should hospice workers be brought into the picture. Ultimately, the care of patients and their families necessitates (a) interdisciplinary cooperation of a health care team, incorporating physicians, nurses, social workers, and other auxiliary supports; and (b) a high level of clinical flexibility to address the evolving needs of the patient and the family (Lacey & Sanderson, 2010). atL80953_09_c09.indd 302 12/5/13 1:44 PM Section 9.9 Social Issues: Cancer in the Policy Arena CHAPTER 9 9.9 Social Issues: Cancer in the Policy Arena A s Charles Rosenberg (1992) pointed out, disease is “not simply a less than optimal physiological state”; rather, it is “an occasion of and potential legitimation for public policy” (p. xiii). The reason is obvious: Anything as potentially disruptive as disease, both socially and culturally, inevitably garners the interest of politicians and results in new legislation. Cancer, in particular, can be understood in this way as both a cultural force and a motivation for political action, as evidenced by President Nixon’s “War on Cancer,” as well as the role of military metaphors in describing cancer, the role of celebrities in public health announcements to prevent or screen for cancer, and the role of public events as a way to raise funds for cancer treatment and prevention. Web Field Trip Watch President Nixon’s speech about the 1971 National Cancer Act, which launched the modern War on Cancer (at http://www.youtube.com/watch?v=qX8d1vOI8l8). Then take a moment to listen to an NPR (2011) broadcast that provides an assessment of War on Cancer, 40 years after the initiation (www.npr.org/2011/12/23/144190091/the-war-on-cancer-turns-40). Critical Thinking Questions 1. According to the NPR story, which areas have seen the most progress? 2. What assumptions about the War on Cancer have been disproven or changed? President’s Nixon’s War on Cancer With the decline of life-threatening infectious diseases and the growth of an aged population, cancer has remained second only to heart disease as leading cause of death. In his 1971 State of the Union Address, President Nixon responded to this epidemiological transition by asking Congress to appropriate an extra $100 million to launch an intensive campaign to find a cure for cancer. In his words, The time has come in America when the same kind of concentrated effort that split the atom and took man to the moon should be turned toward conquering this dread disease. Let us make a total national commitment to achieve this goal (NCI, n.d.-a). In December of that year, Nixon signed the National Cancer Act, in what became known as the War on Cancer (Richard Nixon Foundation, n.d.). What was not well understood then is that cancer is not a single enemy that must be defeated, but a constellation of diseases that must be dealt with on an ongoing basis. As a result, although great strides have been made in treating some cancers, not all research leads have been fruitful. For example, Varmus noted that in the years since Nixon’s war on cancer, testicular cancer has been successfully treated with the drug Cisplatin (NPR, 2011), atL80953_09_c09.indd 303 12/5/13 1:44 PM CHAPTER 9 Section 9.9 Social Issues: Cancer in the Policy Arena Associated Press President Nixon signed the National Cancer Act in December 1971. even though the mechanisms that make this drug particularly effective in treating this type of cancer are still unknown. By contrast, a condition such as pancreatic cancer still has an extremely high fatality rate. Ultimately, the metaphor of a war on cancer (a newer slogan is “Stand Up to Cancer”) may not adequately capture the empirical realities of advances in cancer treatment. However, it has had undeniable cultural appeal as a way to galvanize national commitment (and the disbursement of federal funds). Case Study: Cancer Metaphors in Public Discourse How appropriate is it to use war metaphors to characterize cancer? This was a central theme of Susan Sontag’s book Illness as Metaphor (1978; Susan Sontag Foundation, 2010; http://www.susansontag .com/SusanSontag/books/illnessAsMetaphorExcerpt.shtml). Written while Sontag was being treated for breast cancer, the essay criticized the pervasiveness of military language for describing cancer and its treatments: “killer disease,” “chemical warfare” (i.e., chemotherapy), and the “crusade against cancer.” For Sontag, describing cancer as a powerful “enemy” implied the attendant weakness (and by implication, blame) of cancer patients. She held that the continued use of such language could foster helplessness and discrimination. Consequently, Sontag argued that it would be socially beneficial if people dispensed with such metaphoric language: “My point is that illness is not a metaphor, and that the most truthful way of regarding illness—and the healthiest way of being ill—is one most purified of, most resistant to, metaphorical thinking” (Sontag, 1978; Susan Sontag Foundation, 2010). In retrospect, most commentators believe that Sontag’s call to remove metaphorical language is misguided; human beings have to rely on analogies when explaining novel experiences such serious disease. In the 35 years since Sontag wrote, however, the metaphors that have been used to characterize cancer have become less militaristic. In a study of health articles published in The New York Times, Hanne and Hawken (2007) found that although military-style terms were still present (e.g., “invasive”), there had also been a marked rise in metaphors from information processing: “receptors for estrogen,” “markers,” “genetic control systems,” and “gene deletions and rearrangements.” Hanne and Hawken even quoted from an article written by Sontag’s son, which used a metaphor associated with birth rather than death: “the caterpillar [of cancer research] is about to turn into a butterfly” (p. 95). They viewed this change in language as as reflection of decreased public anxiety following advances in cancer research since the late 1970s. Athough metaphors cannot be banished from public discourse about cancer, they may, in fact, function as crucial mediators between individual (micro) experiences of illness and larger (macro) perceptions. atL80953_09_c09.indd 304 12/5/13 1:44 PM CHAPTER 9 Section 9.9 Social Issues: Cancer in the Policy Arena Celebrity Public Health Messages As one of the leading causes of disease, disability, and death, cancer has garnered a variety of responses by celebrities. These spokespersons have delivered public health announcements about how to avoid risk factors (e.g., smoking) and promoted prevention factors (colorectal cancer screening). These announcements are meant to motivate a public response based on the popularity of the celebrities who participate. In this respect, they illustrate how the war on cancer has become a firmly established part of contemporary cultural life. Among the messages was a posthumously aired public service announcement, in 1986, by actor Yul Brynner, who was then dying of cancer after many years as a heavy smoker earlier in life. Most famous for playing the title role in The King and I on Broadway and in film, Brynner spoke directly into the camera with the simple warning: “Don’t smoke. Whatever you do, just don’t smoke.” Because of its sheer directness and the novel format of seeming to come from beyond the grave, the advertisement has been characterized as “one of the most memorable antismoking statements ever made” (Lerner, 2005). In 2013, the Academy Award winning actress Meryl Streep made a public service announcement (http://starcasm.net/archives/205954) urging people to receive the colorectal screening test. Patrick McMullan Co/SIPPL Sipa USA/ Associated Press Several celebrities, such as Elizabeth Hurley, have participated in cancer awareness and prevention campaigns. Cancer and Public Demonstration/Fundraising Cancer has also given rise to various forms of public-demonstration–style fundraising to support research. Perhaps the most famous such event is the Susan G. Komen Race for the Cure- (http:// apps.komen.org/raceforthecure). Described by the organization’s website as “the world’s largest and most successful education and fundraising event for breast cancer ever created” (Susan G. Komen Race for the Cure, n.d.), the race began in Dallas, Texas, in 1983 with 800 runners; by 2011, it had more than 1.6 million participants with events in cities throughout the United States and the world. Although the Susan G. Komen for the Cure Foundation is the world’s largest breast cancer charity, it has been criticized in recent years for suing other charities that use the phrase “for the cure.” The foundation has also been criticized for receiving support from the chain restaurant Kentucky Fried Chicken, which mass-produces fast food that contributes to obesity. Beyond these criticisms, some have claimed that it is simplistic to equate raising money with “curing cancer.” Although raising money is important, more than simply writing checks is involved in preventing and treating complex chronic conditions. Indeed, the complex challenge of minimizing risk factors by changing human behavior also must be addressed. atL80953_09_c09.indd 305 12/5/13 1:44 PM CHAPTER 9 Chapter Summary Craig Fry Yuma Sun/Associated Press The Relay for Life is a charitable event sponsored by the ACS that raises money for cancer research. Other charitable events include the Relay for Life sponsored by the ACS (http://www.relay forlife.org/) and the Light the Night- Walk by the Leukemia and Lymphoma Society (www .lightthenight.org). These events raise funds from corporate and philanthropic sponsors, as well as individual fundraising efforts by those who participate. The events also serve as public remembrances of those who have died from cancer. As such, in addition to their ability to raise money for research, these types of events highlight the role that cancer plays in our collective public consciousness. Chapter Summary Cancer is the process whereby cells divide abnormally within the body to create new malignant cells that can invade and destroy healthy cells. Currently, cancer is second only to heart disease as the leading cause of death in the contemporary United States. Nevertheless, notable increases in longevity have occurred among those diagnosed with cancer, making cancer more often a chronic rather than a fatal illness. This shift is reflected in the subtle change of language from “cancer victim” to “cancer survivor.” But the reality of living with cancer means that the condition has become both a long-term disease and a source of disability. Cancer is caused by multiple factors. For this reason, it is generally more appropriate to speak of risk and preventive factors rather than referring to a specific cause. Risk factors can include genetics, age, specific behaviors, and in some instances, a pathogen, such as a virus. Because behavior is a frequent key risk factor for particular types of cancer, changes in society can affect the incidence and prevalence of different types of cancer. A prime example is the steady rise of lung and bronchus cancer following the introduction of cigarettes at the turn of the 20th century (see Figure 9.1). Screening involves performing tests on asymptomatic individuals to detect cancer at an earlier stage, when it is most treatable. Tests have been developed for the most prominent cancers such as prostate, breast, cervical, and colon. Generally, these tests are given periodically after individuals have reached an age (e.g., 40 or 50 years) when these types of cancer are most frequently diagnosed. Recently, based on risk–benefit considerations, the appropriate age to initiate certain screening tests has become a controversial issue in health policy. Traditionally, cancer has been treated by some combination of surgery, chemotherapy, or radiation: Surgery involves performing an operation to remove the cancerous tumor from the body; chemotherapy involves administering powerful drugs (often intravenously) to kill cancer cells; and radiation involves directing high-energy particles at cancer sites in the body to destroy the cancer atL80953_09_c09.indd 306 12/5/13 1:44 PM Chapter Summary CHAPTER 9 cells. Each mode of therapy has its own distinctive side effects; thus, cancer patients often need time away from work or school to recover from the treatments. More recent innovations involve targeted therapy, which draws on new scientific knowledge of how cancer cells develop in order to target and kill only the cancerous cells while leaving nearby normal cells intact. At the individual (micro) level, a cancer diagnosis is a powerful stressor. Each individual’s response is unique, but the two most common are a resolve to fight the disease, or alternatively, a state of passive distress. The particular response will be shaped by the individual’s psychology and the general prognosis for the particular type of cancer. A cancer diagnosis can also produce stress within the individual’s family. Thus, psychosocial support should be available not only for the cancer patient but also for his or her immediate family. At the meso level of school and work, returning to routine life outside the home following treatment aids in the process of psychological rehabilitation: It re-creates a sense of normalcy following a life-changing illness. Although the likelihood of returning to work increases over time, the nature of the treatment determines how rapidly a cancer patient can do so. Generally, those who need chemotherapy take longer because of its more debilitating side effects. The perception persists among employers and employees that discrimination is still practiced against cancer patients in the workplace. However, the ADA (passed in 1990) at least legally forbids these practices and offers recourse for cancer survivors to redress discrimination when it does occur. At the macro level, cancer patients are embedded in state and national networks of cancer registries that keep track of their diagnoses and treatment outcomes. Cancer patients also have the opportunity to participate in federally or privately funded clinical trials, some of which are administered at the community level. Finally, many cancer patients are given the opportunity to participate in NCCCPs. By linking community hospitals with various national networks, this program permits local cancer patients to stay in their home communities while accessing state-of-the-art care through the affiliation with NCI. Because local hospitals are better able to know the needs of the diverse populations they serve, this program offers the possibility of mediating between micro, meso, and macro perspectives in future cancer treatment. An individual can be diagnosed with cancer at any point in the life cycle. Beyond the physical effects of the disease and its treatment, children and adolescents face additional psychological issues. Their cancers may induce parental dependency at precisely the point that young people want to assert independence. Also, children and adolescents who have had cancer face an increased risk of secondary cancers in adulthood. Young adults with cancer must add managing their disease to the unique transitions they face in forging a distinct adult identity, while dealing (in some cases) with less than adequate social support services. Older adults with cancer may have to deal with not only managing this disease, but also other sources of potential disability, such as diabetes or heart disease. With advances in therapy, many patients have now moved to the stage of being a cancer survivor. To ease this transition, there have been increasing calls for the creation of SCPs tailored to the individual and intended to provide guidance in the posttreatment phase of cancer care. To date, however, SCPs have been provided to patients on only a sporadic basis. Despite increases in longevity among cancer survivors, cancer is still a leading cause of death. Consequently, when a patient has been declared to have terminal cancer, the care team has to formulate a plan that will encourage a “good death.” Hospice staff and other care providers also need to address the psychosocial issues of grief and loss among the patient’s family members. atL80953_09_c09.indd 307 12/5/13 1:44 PM Key Terms CHAPTER 9 Cancer has become an integral part of our nation’s collective consciousness, its social and cultural life. In 1971, President Richard Nixon launched a War on Cancer and proposed increased funding for the NCI. Although some have criticized the use of such military language, the view that cancer is an “enemy to be destroyed” has served as an effective rallying cry for advocates in both the public and private sectors. Celebrities have repeatedly made public service announcements advocating cancer prevention. As part of another trend, many cancer organizations sponsor public walks and other high-profile events as fundraising strategies for cancer research. These events also showcase collective communal solidarity in support and remembrance of cancer sufferers and those who have died from the disease. Key Terms biopsy Exploratory surgery used for diagnosing tissue. In it, the surgeon removes tissue to determine whether it is malignant (cancerous). Bradford Hill criteria Nine factors to consider when determining whether two associated phenome...
Purchase answer to see full attachment