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This document contains Chapters 9 to 12 Chapter 9 Patients, Providers, and Treatments Chapter Outline I. Health Care Services A. Patient Consumerism B. Structure of the Health Care Delivery System C. Patient Dissatisfaction in Managed Care II. The Nature of Patient-Provider Communication A. Setting B. Provider Behaviors That Contribute to Faulty Communication C. Patients’ Contributions to Faulty Communication D. Interactive Aspects of the Communication Problem III. Results of Poor Patient-Provider Communication A. Nonadherence to Treatment Regimens B. Good Communication IV. Improving Patient-Provider Communication and Increasing Adherence to Treatment A. Teaching Providers How to Communicate V. The Patient in the Hospital Setting A. Structure of the Hospital B. The Impact of Hospitalization on the Patient VI. Interventions to Increase Information in Hospital Settings VII. The Hospitalized Child A. Preparing Children for Medical Interventions VIII. Complementary and Alternative Medicine A. Philosophical Origins of CAM IX. CAM Treatments A. Dietary Supplements and Diets B. Prayer C. Acupuncture D. Yoga E. Hypnosis F. Meditation G. Guided Imagery H. Chiropractic Medicine I. Osteopathy J. Massage K. Who Uses CAM? L. Complementary and Alternative Medicine: An Overall M. Evaluation X. The Placebo Effect A. History of the Placebo B. What Is a Placebo? C. Provider Behavior and Placebo Effects D. Patient Characteristics and Placebo Effects E. Patient-Provider Communication and Placebo Effects F. Situational Determinants of Placebo Effects G. Social Norms and Placebo Effects H. The Placebo as a Methodological Tool Learning Objectives Describe the structure of the health care delivery system. Compare and contrast the characteristics of private, fee-for-service care, and health maintenance organizations. Describe the changes that have contributed to patient dissatisfaction in managed care. Describe factors inherent in the medical setting that influence the quality of patient-provider communication. Explain the relationship of patient-provider communication to malpractice litigation. Describe providers’ behaviors that contribute to faulty patient-provider communication. Describe patient factors that contribute to faulty patient-provider communication. Describe qualities of the provider-patient interaction that contribute to faulty communication. Describe the prevalence and assessment of nonadherence to treatment regimens. Describe the causes of nonadherence to treatment regimens. Define creative nonadherence and the factors that contribute to creative nonadherence to treatment regimens. Describe the nature and effectiveness of interventions designed to teach providers how to communicate effectively with patients. Describe the nature and effectiveness of strategies for improving patient adherence to treatment regimens. Describe the various structures and functions of the hospital setting. Describe the impact of hospitalization on the patients. Describe the various factors to consider when designing an intervention to increase information in the hospital setting. Describe the factors that affect the hospitalized child, and how to prepare children for medical interventions. Describe complementary and alternative medicine. Describe the various kinds of CAM therapies available. Describe the placebo effect. Describe how the effectiveness of a placebo depends on the provider’s behavior. Describe the double-blind experiment. Lecture Suggestions Structure of the Health Care Delivery System: Until a few decades ago, the majority of Americans received their health care from private physicians, whom they paid directly on a visit-by-visit basis, in what was termed private, fee-for-service care. That picture has changed. More than 70 million Americans now receive their health care through a prepaid financing and delivery system, termed as health maintenance organization (HMO) (Kaiser State Health Facts, 2011). Communication Between Health Professionals and Patients: The nonverbal behavior exchanged between patients and their providers may be a revealing source of information about interpersonal expectations and attitudes. A recent study examined the physician’s characteristics that lead to positive patient outcomes (Clark et al., 2007). Some of these characteristics were listening, inquiring about at-home management, nonverbal attention, interactive conversation, tailoring short-term goals, and log-term therapeutic plan. Conversely, patients often complain about being treated in a patronizing or dehumanizing fashion by medical providers. Using “baby talk” (that is, short, simplistic sentences) is perceived differently. When individuals perceived “baby talk” more positively, they reported higher self-esteem, but when elderly individuals associated “baby talk” with perceptions of superiority, they reported lower self-esteem (O’Connor & Rigby, 1996). Physician’s depersonalizing behaviors can lead to poor quality encounters, low patient satisfaction, and low adherence to medical treatment (William, Savage, & Linzer, 2006). Farrah Schwartz1, Mandy Lowe1, and Lynne Sinclair (2010) in their article talk about how the ability to successfully convey ideas to the individual with differing roles, capabilities, and priorities is identified as a facilitator to the efficiency of overall healthcare. Explaining Illness: Whaley (2000) and Castro and colleagues (2007) provide excellent resources for developing a lecture on the issues involved in explaining illness and increasing adherence. The chapter by Thompson has excellent sections on medical jargons and on effective communication. Gillotti and Applegate’s chapter examines the issues involved in delivering bad news and provides suggestions for effective practice. Other chapters focus on specific populations. For instance, if a parent prepares a child for admission several days before hospitalization—explaining why it is necessary, what it will be like, who will be there, how often the parent will visit, and so on—this preparation may ease the transition. Adherence to Treatment Regimen: The chapter by Dunbar-Jacob and Schlenk (2000) can be used to extend the text’s discussion of adherence. The authors examine the problems inherent in assessing adherence, predictors of poor adherence and their relation to clinical outcomes, and suggest some interventions to promote adherence. The social support literature provides evidence for the relationship of social support and health. DiMatteo’s (2004) meta-analysis indicates that social support may contribute to increased adherence. Christensen’s (2004) book discusses nonadherence from a psychological and behavioral perspective. In addition, his experience working with patients has contributed to his understanding of patient characteristics, personality traits of the patient, family and social support, and finally the provider characteristics. Effective nonverbal communication can improve adherence to treatment (Guéguen, Meineri, & Charles-Sire, 2010). Disorganized families with no regular routines have poorer adherence (Hall, Dubin, Crossley, Holmqvist, & D’Arcy, 2009; Jokela, Elovainio, Singh-Manoux, & Kivimäki, 2009;Schreier & Chen, 2010). Medical Training for the 21st Century: The American medical educational system has been criticized for its “failure to train and prepare physicians for the challenges created by the changing health care market” (Patel, 1999). The traditional medical curricula are in flux (O’Connel & Pascoe, 2004), and thus educating physicians for the 21st century has been reviewed by the Accreditation Council on Graduate Medical Education Outcomes (2005). Similarly, in 1996 the Institute of Medicine launched the third phase of the IOM Health Care Quality Initiative. The IOM definition of quality encourages an intensive review of the literature to better grasp the problem at hand. Recently, the IOM efforts have focused on the following: fostering rapid advances in health care; learning from systems demonstrations; redesigning care delivery; keeping patients safe; furthering measurement and informed purchasing, reforming health professions’ education; encouraging information technology implementation; quality of care in rural America; quality of care for mental and substance-use condition; and preventing medication errors. Huddle T.S. & Heudebert G.R., in an article, speak of many asking for changes in internal medical training to match the changes in the practice environment. Complementary and Alternative Medicine: Nearly two-thirds of adults in the United States use complementary and alternative medicine (CAM), in addition to or instead of traditional medicine (Barnes, Powell-Griner, McFann, & Nahin, 2004; Neiberg et al., 2011). Most commonly, those who use more than one CAM therapy combine herbal or dietary supplements with prayer or meditation (Neiberg et al., 2011). Depression, anxiety, stress, insomnia, severe headaches, and stomach and intestinal disorders also prompt the use of CAM therapies, particularly when these conditions have not been successfully treated through traditional medicine (Frass et al., 2012). The Placebo Effect: People do not get better only because they think they are going to get better, although expectations play an important role (Geers, Wellman, Fowler, Rasinski, & Helfer, 2011; Webb, Hendricks, & Brandon, 2007). Nor does a placebo work simply because the patient is distracted from the condition (Buhle, Stevens, Friedman, & Wager, 2012). The placebo response is a complex, psychologically mediated chain of events that often has physiological effects. Recommended Reading 1. Nathan Moore & Elisabeth Askin (2012). The Health Care Handbook. Washington University. This book is a guide to the people, the organizations, and the industries that make up the health care system of the United States of America and the predominant issues they face. 2. Rezvan Ameli, (2013). 25 Lessons in Mindfulness: Now Time for Healthy Living. American Psychological Association. This book explains the theoretically proven effects of mindfulness on health and also talks about the philosophy behind it. This book also helps one establish their own mindfulness practice. 3. Walter A. Brown, (2012). The Placebo Effect in Clinical Practice. Oxford Press. This book talks about the many placebo myths, it discusses the possible affirmative effects of placebos, it talks about the ethics of using placebos in researches and it also addresses how the placebo control can be applied to clinical practice and care. 4. Bosworth, J. B., Oddone, E. Z., & Weinberger, M. (2006). Patient treatment adherence: Concepts, interventions and measurement. Routledge, Taylor and Francis Group. This is a comprehensive book that summarizes the literature relating to adherence for several health behaviors and populations. It presents problems associated with treatment adherence; theoretical models that have commonly been used to understand, predict, and/or improve adherence; adherence with specific behaviors including exercise diet, rehabilitation, medication, and psychological therapies, and strategies used to enhance adherence. 5. James, L. C., & Folen, R. A. (Eds.), (2005). The primary care consultant: The next frontier for psychologists in hospitals and clinics. Washington, DC: American Psychological Association. A collection of chapters in which the authors describe and illustrate their programs, contribute knowledge of how illness affects psychological and psychosocial function and how to motivate patients, and provide insights on how to enhance health and prognosis. 6. Spiro, H. M., Curnen, M. G. M., Peschel, E., & St. James, D. (Eds.), (1996). Empathy and the practice of medicine: Beyond pills and the scalpel. New Haven, CT: Yale University Press. This edited volume addresses the role of empathy in humanistic medical training programs. Chapters address topics such as the nature of empathy, techniques to teach empathy to pre-medical and medical students, and the role of emotion in the practice of medicine. Activities 1. Evaluation of Student Health Center: If you have the support of the campus student health center director, an evaluation of the facility’s psychosocial climate makes a useful class assignment. I have found that campus health care personnel will make their facilities open for individual student tours during a specified time block. This assignment takes some advance planning, but student responses have been positive. It is important for students to understand that patients’ privacy must be respected and they must follow any guidelines that the health care personnel may provide. Assignments might follow an outline such as the following. The Director of Student Health has agreed to make the on-campus facilities available to the class to evaluate the psychosocial environment in the center. In order to protect patient confidentiality, it is important that you do not conduct your evaluation during the times that they have physicians examining patients. Typically, these times are as follows: Monday through Friday, 4:00 to 4:30 p.m. Tuesday, Wednesday, Friday, 12:00 to 2:00 p.m. Monday and Thursday, 7:30 to 9:30 a.m. Their assignment should follow these guidelines: Develop a system of evaluating the clinic’s psychosocial climate (include your criteria and questions with your assignment). Conduct an evaluation of the clinic according to your criteria. What do you conclude about the psychosocial environment? Do you have any recommendations for improvement? If so, what are they? 2. Obama Care Debate: Break the class up into two groups. Those who support President Obama’s healthcare plan and those who don’t. Allow each side to create its arguments, and then have a structured debate on the topic. Each side should be directed to make reasoned arguments based upon their side and not based up on their own political beliefs. Each side should use the information from the text to support their arguments. 3. Complementary and Alternative Medicine (CAM): Complementary and alternative medicine is a diverse group of therapies, products, and medical treatments that include prayer, potions, natural herb products, meditation, yoga, massage, homeopathic medicines, and acupuncture, among other treatments. Ask your students to read extensively on the use of complementary and alternative medicine (CAM), and ask them to write a detailed report on the various illnesses that can be treated using CAM with examples or cases. 4. The Placebo Effect: A placebo is “any medical procedure that produces an effect in a patient because of its therapeutic intent and not its specific nature, whether chemical or physical.” Any medical procedure, ranging from drugs to surgery to psychotherapy, can have a placebo effect. Ask your students to read the case given in box 9.7 in the chapter on “Cancer and the Placebo Effect.” Ask your students to read more such cases and write a report on other terminal illnesses that have been treated successfully using placebos. Videos 1. The students can gain more knowledge on how to develop products and services to make a patient-centered organization by watching this video: Healthcare Consumerism: Shifting to a Patient-Centered Organization. 2. Films for the Humanities & Sciences available at http://ffh.films.com How to talk to your doctor. (1990).: Peter Jennings reporting: Breakdown—America’s health insurance crisis (2005). Reviews the growing number of Americans without health insurance. Reports: Critical condition (2004). Examines some of the reasons for America’s health care costs. NewsHour medical ethics and issues anthology (2007). Jim Lehrer raises some challenging questions regarding the health care system. Guided Imagery: Guided Visualization: Working with the Healing Power of Your Immune System (2006). This video helps people who are searching for ways to control and manage anxiety, acute and chronic pain and helplessness regarding health and their ability to heal. The Placebo Effect: The Wonder Pill. This video reviews the roots of the placebo effect to the days of herbal remedies and speaks of how placebos can make a significant alteration in the in the brains of patients with depression. References 1. Castro, C. M., Wilson, C. Wang, F., & Schillinger, D. (2007). Babel babble: Physicians’ use of unclarified medical jargon with patients. American Journal Of Health Behavior, 31, S85–95. 2. Christensen, A. J. (2004). Patient adherence to medical treatment regimens: Bridging the gap between behavior science and biomedicine. New Haven: CT: Yale University Press. 3. Clark, N. M. (2008). The clinician-patient partnership paradigm: Outcomes associated with physician communication behavior. Clinical Pediatrics, 47, 49–57. 4. Cora-Bramble, D., & Williams, L. (2000). Explaining illness to Latinos: Cultural foundations and messages. In B. Whaley (Ed.), Explaining illness: Research, theory, and strategies (pp. 259–280). Mahwah, NJ: Lawrence Erlbaum. 5. DiMateo, RM. R. (2004). Social support and patient adherence to medical treatment: A meta-analysis. Health Psychology, 23, 207–218. 6. Dunbar-Jacob, J., & Schlenk, E. (2000). Patient adherence to treatment regimen. In A. Baum, T. Revenson, & J. Singer (Eds.), Handbook of health psychology (pp. 571–580). Mahwah, NJ: Lawrence Erlbaum. 7. Gabbard-Alley, A. (2000). Explaining illness: An examination of message strategies and gender. In B. Whaley (Ed.), Explaining illness: Research, theory, and strategies (pp. 147–170). Mahwah, NJ: Lawrence Erlbaum. 8. Gillotti, C., & Applegate, J. (2000). Explaining illness as bad news: Individual differences in explaining illness-related information. In B. Whaley (Ed.), Explaining illness: Research, theory, and strategies (pp. 101–120). Mahwah, NJ: Lawrence Erlbaum. 9. Institute of Medicine Committee of Quality Health Care in America. (2001). Crossing the quality chasm: a new health system for the 21st century. Washington, DC: National Academy Press. 10. Nusbaum, J. F., Pecchioni, L., Grant, J. A., & Folwell, A. (2000). Explaining illness to older adults: The complexities of provider-patient interactions as we age. In B. Whaley (Ed.), Explaining illness: Research, theory, and strategies (pp. 171–194). Mahwah, NJ: Lawrence Erlbaum. 11. O’Connell, M. T., & Pascoe, J. M. (2004). Undergraduate medical education for the 21st century: Leadership and teamwork. Family Medicine, 36, S51–S56. 12. O’Connor, B. P., & Rigby, H. (1996). Perceptions of baby talk, frequency of receiving baby talk, and self-esteem among community and nursing home residents. Psychology and Aging, 11, 147–154. 13. Patel, K. (1999). Physicians for the 21st century. Evaluation & the Health Professions, 22, 379–398. 14. Stroman, D. (2000). Explaining illness to African Americans: Employing cultural concerns with strategies. In B. Whaley (Ed.), Explaining illness: Research, theory, and strategies (pp. 123–146). Mahwah, NJ: Lawrence Erlbaum. 15. The Accreditation Council on Graduate Medical Education Outcomes Project. www.acgme.org. 16. Thompson, T. L. (2000). The nature and language of illness explanations. In B. Whaley (Ed.), Explaining illness: Research, theory, and strategies (pp. 3–39). Mahwah, NJ: Lawrence Erlbaum. 17. Tom-Orme, L. (2000). Native Americans explaining illness: Storytelling as illness experience. In B. Whaley (Ed.), Explaining illness: Research, theory, and strategies (pp. 297–314). Mahwah, NJ: Lawrence Erlbaum. 18. Whaley, B. (2000). Explaining illness to children: Theory, strategies, and future inquiry. In B. Whaley (Ed.), Explaining illness: Research, theory, and strategies (pp. 195–208). Mahwah, NJ: Lawrence Erlbaum. 19. Whaley, B. (Ed.). (2000). Explaining illness: Research, theory, and strategies. Mahwah, NJ: Lawrence Erlbaum. 20. Williams, E. S., Savage, G. T., & Linzer, M. (2006). A proposed physician-patient cycle model. Stress and Health: Journal of the International Society for the Investigation of Stress, 22, 131–137. 21. Yep, G. A. (2000). Explaining illness to Asian and Pacific Islander Americans: Culture, communication, and boundary regulation. In B. Whaley (Ed.), Explaining illness: Research, theory, and strategies (pp. 281–296). Mahwah, NJ: Lawrence Erlbaum. Chapter 10 The Management of Pain And Discomfort Chapter Outline I. The Elusive Nature of Pain A. Measuring Pain B. The Physiology of Pain C. Neurochemical Bases of Pain and Its Inhibition II. Clinical Issues in Pain Management A. Acute and Chronic Pain B. Pain and Personality III. Pain Control Techniques A. Pharmacological Control of Pain B. Surgical Control of Pain C. Sensory Control of Pain D. Biofeedback E. Relaxation Techniques F. Distraction G. Coping Skills Training H. Cognitive-Behavioral Therapy IV. Pain Management Programs A. Initial Evaluation B. Individualized Treatment C. Components of Programs D. Involvement of Family E. Relapse Prevention F. Evaluation of Programs Learning Objectives Explain the medical and psychological significance of pain. Explain the role of the social context in the experience of pain. Describe the psychological and social consequences of chronic pain. Describe the techniques of pain measurement. Explain the physiological aspects of pain. Describe the neurochemical bases of pain and pain inhibition. Compare and contrast acute and chronic pain. Define the different kinds of chronic pain (i.e., chronic benign pain, recurrent acute pain, and chronic progressive pain). Describe the relationship between individual differences in personality and the experience of chronic and acute pain. Describe the relationship between pain and stereotyped response to stress. Explain the relation between pain and anger. Describe pharmacological techniques to control pain and their effectiveness. Describe surgical techniques to control pain and their effectiveness. Describe the use and effectiveness of counterirritation as a sensory method of pain control. Describe the use and effectiveness of biofeedback to control pain. Describe the use and effectiveness of relaxation techniques to control pain. Describe the use and effectiveness of distraction to control pain. Describe the use and effectiveness of coping techniques to control pain. Describe the use and effectiveness of cognitive techniques to control pain. Describe the use and effectiveness of hypnosis to control pain. Describe the use and effectiveness of acupuncture to control pain. Describe the use and effectiveness of guided imagery to control pain. Explain the principles of chronic pain management. Describe the nature of pain management programs. Lecture Suggestions What is Pain? Coakley and Kaufman’s (2008) book provides an interdisciplinary approach of what pain is: Pain is a sensation that can hurt, cause discomfort, distress, or terrible agony. Pain research is extensive but much still remains a mystery. While scientists show that pain sensations can be shaped by psychological state and interpretation, many individuals and cultures experience pain differently. In this book, neuroscientists, psychiatrists, anthropologists, musicologists, and religious scholars examine the ways that meditation, music, prayer, and ritual can mediate pain, offer a narrative that transcends the sufferer, and give public dignity to private agony. This book includes various topics such as the molecular basis of pain, the controversial status of gate control theory, the possible links between the relaxation response and meditative practices in Christianity and Buddhism, and the mediation of pain and intense emotion in music, dance, and ritual. Turk and Okifuji’s (2002, 2003) chapters on chronic pain are an excellent organizing focus for a lecture. They provide theoretical models and discuss ways to learn pain using learning theory. In addition, they examine the affective and cognitive components of pain. After discussing the gate control theory of pain and the biopsychosocial theory, they provide a cognitive-behavior treatment. Keefe and colleagues’ (2005) article, which focuses on disease-related pain, also provides an excellent basis for a lecture. They discuss the biomedical model of disease-related pain and its limitations. Using psychological approaches, they present pain management techniques for patients with rheumatoid arthritis and with cancer. The video, Finding Your Way, referenced below, would complement a lecture on managing cancer pain. Beth Azar (2011) wrote an article “Psychology is key to pain management,” which can be found in the American Psychological Association’s website. The article briefly talks about pain, methods of managing pain, and the need for better integrated care and research on pain. Pain and Ethnicity: Gatchell (2004) provides a comprehensive approach to help individuals who experience acute and chronic pain. Similarly, much research has been conducted to examine cancer pain assessment and management (Chang et al., 2006), the pharmacologic management of cancer pain (Cleary, 2007), spiritual pain among patients with advanced cancer and renal cancer (Mako et al., 2006) and personality characteristics (Green et al., 2008). A recent review of the literature (Cintron & Morrison, 2006) reveals several racial and ethnic disparities with regard to pain diagnosis and treatments. For instance, health professionals are more likely to underestimate minority patients’ level of pain; African Americans and Latinos are less likely to receive pain medication and more likely to not receive appropriate treatments. Ethnicity and sex may also affect how individuals perceive and express pain (Mailis-Cagnon et al., 2007). Findings also indicate that Latinos are more likely to report more pain relative to Caucasians and, more often, their pain was associated with increased depression (Hernandez & Sachs-Ericsson, 2006). The authors posit that cultural differences in accepting and expressing distress may be associated with higher pain relative to Caucasians. Karen O. Anderson, Carmen R. Green, and Richard Payne (2009) in their article “Racial and Ethnic Disparities in Pain: Causes and Consequences of Unequal Care” talk about how pain is perceived and managed differently depending on racial and ethnic differences. The article also discusses the different degrees of pain, and how individuals belonging to minority groups usually receive poor quality health care. Palliative Care: Palliative care refers to medical care of treatment directed on reducing the severity of the symptoms, and thus focuses on reducing pain and suffering. Hallenbeck’s (2004) guide to palliative care draws from extensive clinical experience and many years of teaching. Dr. Hallenbeck links real life stories of illness to practice medical advice. Carmen R. Green and Tamera Hart-Johnson (2010) in their article “Cancer Pain: An Age-Based Analysis” explain pain related to cancer, and the quality of life of patients suffering from cancer. Gate Control Theory: After discussing gate control theory with an eminent pain researcher who indicated that although it was a good theory in its time, it has not been able to address in depth the psychological factors associated with pain, the author elected not to emphasize this theory. Because this is such a popular explanation, students may have been introduced to the idea in other classes. Thus, an exploration and critique of gate control theory, along with some alternate, but also incomplete models, may be appropriate. Turk (2001) provides an exceptional overview of the physiological and psychological processes of pain. He examines the gate control theory and reviews the diathesis stress model and the cognitive behavior model. Massieh Moayedi and Karen D. Davis (2012) in their article “Theories of pain: From Specificity to Gate Control” discuss the physiology of pain, and the various theories of pain including the gate control theory. A recent article in the NewYork Times (2013) on Headache – Migraine explains the causes, symptoms, exams and tests, treatment, support groups, and prognosis for migraines. Recommended Reading 1. Doleys, D. M. (2000). Chronic pain. In R. G. Frank & T. R. Elliott (Eds), Handbook of rehabilitation psychology (pp. 185–203). Washington, DC: American Psychological Association. This chapter, written for professionals, provides background information on recurrent acute and chronic pain. Issues of prevention, management, and treatment are discussed. 2. Gatchel, R. J. (2005). Clinical essentials of pain management. Washington, DC: American Psychological Association. This book provides a comprehensive approach to deal with pain management. The author provides conceptual foundations of pain management, ways to assess and treat pain, and discusses special issues and the future of pain management. 3. Melzack, R., & Wall, P. D. (1982). The challenge of pain. New York: Basic Books. This classic study of pain reviews theories of pain, the underlying physiological elements of pain, and techniques of pain management and control. 4. Skevington, S. M. (1995). Psychology of pain. New York: Wiley. This text provides an overview of pain research for advanced students and professionals. The author reviews biological mechanisms, measurement, and theories of pain. Also discussed are variables such as gender, personal control, and coping that influence the perception of pain. Activities 1. Pain Management Programs: If one’s university is affiliated with a medical center or if a local rehabilitation clinic is accessible, one could request a guest speaker for a classroom presentation of pain management intervention techniques. 2. The Subjective Experience of Pain: Have students write essays about an incident during which their experience of pain was modulated by some set of psychological or situational factors. With some thought, most students can recall a sports-related injury or a stressful experience that influenced their perception of pain. A sample assignment might follow these guidelines. The readings and the material discussed during this week of class focus on the experience of pain and techniques by which individuals and/or providers manage their physical pain. Pick any topic discussed in class or in this week’s readings and write a brief essay on this topic. The essay should include: A brief description of a personal experience or an observation that illustrates one or more of the phenomena covered in class or the text. A brief explanation of the theory or research that one can apply to this experience or observation. An evaluation of how well this research or theory seems to explain this experience or observation. 3. Medical/Dental Procedures and Pain Management: An alternative assignment might involve specifically targeting the control of pain and anxiety during a medical or dental procedure. The use of an interview format would ensure that students assess the perception of pain in a comprehensive and thorough manner. A sample assignment is provided as follows. Interview two friends (use pseudonyms please), and ask them to recall a medical or dental procedure during which they had to regulate the amount of pain and/or anxiety they were experiencing. Then, analyze one’s friends’ responses within the context of the issues discussed in Chapter 10 of the text and lectures. This task will consist of the following: Develop a brief interview format that one can use to discuss these issues. Make it specific in order to address the goals of this assignment. Include the interview format as an appendix to the assignment. Discuss the specific interview responses in relationship to pain and its control and management. What conclusion can one draw about his or her friends’ experiences with pain and its management? What factors seem to be involved in successful pain control and management (if observed)? Can one identify factors that seem to explain why one’s friends might have had difficulty managing their pain? What role (if any) did perceived control play? Make sure to incorporate the theories and concepts discussed in class in the analysis. Videos 1. American Psychological Association available at www.apa.org Pain management: Dr. Gatchel uses a biopsychosocial approach in understanding his patient’s experiences of pain. Hypnosis for pain control: Dr. Patterson uses hypnosis to help his clients deal with chronic pain. Working with headaches: Dr. Penzien uses a cognitive behavioral approach in helping his clients. He evaluates various factors that may affect headaches and discusses assessment and treatment. 2. Fanlight Productions available at www.fanlight.com Finding your way (1989): Using cancer as the illness, this video demonstrates use of a variety of pain control techniques. Relaxation training, guided imagery, and pain meters are included. Although not recent, sections could be used after presentation of each method. A disease called pain (2003): This video was not previewed. From the website: “Among the cutting-edge physicians and researchers who comment on the cases in this comprehensive film are Angela Mailis-Gagnon, an expert on neuropathic injuries; Ronald Melzack, discussing the gate control theory of pain; Clifford Woolf, mapping the DNA of pain to discover how and why it changes; Patrick McGrath and Allen Findley, investigating how pain interferes with the brain's ability to process information; and Celeste Johnston, who studies pain responses in infants.” 3. Films for the Humanities & Sciences available at http://ffh.films.com Pain: The language of the body and the mind. The physiology of pain. (2000): Examines the physiological and neurological control of pain. The language and examples used are accessible by undergraduates with little biological background. The examination of chronic pain focuses on rheumatoid arthritis, diabetic neuropathy, phantom limb pain, and pain of unknown origin. Pain: The language of the body and the mind. The psychology of pain (2000): Examines the psychological basis and control of pain. Provides techniques to manage pain during childbirth. Examines the impact of stress and anxiety on the experience of pain. Looks at the use of group support and pain therapy to deal with illness behaviors related to pain. References 1. Chang, V. T., Janjan, N., Jain, S., & Chau, C. (2006). Update in cancer pain syndromes. Journal of Palliative Medicine. 1414–1434. 2. Cintron, A. & Morrison, R. S. (2006). Pain and ethnicity in the United States. A systematic review. Journal of Palliative Medicine, 9, 1454–1473. 3. Clearly, J. F. (2007). The pharmacologic management of cancer pain. Journal of Palliative Medicine, 10, 1369–1394. 4. Coakley, S. & Kaufman Shelemay, K. (Eds.) (2008). Pain and its transformations: The interface of biology and culture. Cambridge, Mass: Harvard University Press 5. Davison, S. N. (2007). The prevalence and management of chronic pain in end-stage renal disease. Journal of Palliative Medicine, 10, 1277–1287. 6. Gatchel, R. J. (2004). Clinical essentials of pain management. Washington, DC: American Psychological Association. 7. Green, S. M., Hadjistavropoulos, T., & Sharpe, D. (2008). Client personality characteristics predict satisfaction with cognitive behavior therapy. Journal of Clinical Psychology, 64, 40–51. 8. Hallenbeck, J. L. (2003). Palliative care perspectives. New York, NY: Oxford University Press. 9. Herrnandez, A. & Sachs-Ericsson, N. (2006). Ethnic differences in pain reports and the moderating role of depression in a community sample of Hispanic and Caucasian participants with serious health problems. Psychosomatic Medicine, 68, 121–128. 10. Lieberman, J. A. (1996). Ethical dilemmas in clinical research with human subjects: An investigator’s perspective. Psychopharmacology Bulletin, 32, 19–25. 11. MacGregor, E. A. (1997). The doctor and the migraine patient: Improving compliance. Neurology, 48, S16–S20. 12. Mailis-Cagnon, A., Yeneswaran, B., Nicholson, K., Lakha, S. F., Papagapiou, M., Steinman, A., Ng, D. et al. (2007). Ethnocultural and sex characteristics of patients attending a tertiary care pain clinic in Toronto, Ontario. Pain Research and Management, 12, 100–106. 13. Mako, C., Galek, K., & Poppito, S. R. (2006). Spiritual pain among patients with advanced cancer in palliative care. Journal of Palliative Medicine, 9, 1106–1113. 14. Peters, M., Vydelingum, V., Huijer, H., & Dowson, A. (2007). Migraine and chronic daily headache management: Implications for primary care practitioners. Journal of Clinical Nursing, 16, 159–167. 15. Silver, S., Gano, D., & Gerretsen, P. (2008). Acute treatment of paediatric migraine: A meta-analysis of efficacy. Journal of Paediatrics and Child Health, 44, 3–9. 16. Solomon, G. D. (1997). Evolution of the measurement of quality of life in migraine. Neurology, 48, S10–S15. 17. Turk, D. C. (2001). Physiological and psychological bases of pain. In A. Baum, T. Revenson, & J. Singer (Eds.), Handbook of health psychology (pp. 117–137). Mahwah, NJ: Lawrence Erlbaum. 18. Turk, D. C. & Okifuji, A. (2002). Chronic pain. In Christensen, A. J., & Antoni, M. H. (Eds.), Chronic physical disorders: Behavioral medicine’s perspective (pp. 165–190). Malden, MA: Blackwell. 19. Turk, D. C. & Okifuji, A. (2003). Pain Management. In I. V. Weiner (Series Ed.) & A. M. Nezu, C. M. Nezu, & P. A. Geller (Vol. Eds.), Handbook of psychology: Vol. 9, Health psychology (pp. 293–315). Hoboken, NJ: John Wiley. 20. Turk, D. W. & Winter, F. (2005). The pain survival guide: How to reclaim your life. Washington, DC. American Psychological Association. Chapter 11 Management of Chronic Illness Chapter Outline I. Quality of Life A. What Is Quality of Life? B. Why Study Quality of Life? II. Emotional Responses to Chronic Illness A. Denial B. Anxiety C. Depression III. Personal Issues in Chronic Disease A. The Physical Self B. The Achieving Self C. The Social Self D. The Private Self IV. Coping with Chronic Illness A. Coping Strategies and Chronic Illness B. Patients’ Beliefs About Chronic Illness V. Comanagement of Chronic Illness A. Physical Rehabilitation B. Vocational Issues in Chronic Illness C. Social Interaction Problems in Chronic Illness D. Gender and the Impact of Chronic Illness E. Positive Changes in Response to Chronic Illness F. When the Chronically Ill Patient Is a Child VI. Psychological Interventions and Chronic Illness A. Pharmacological Interventions B. Individual Therapy C. Relaxation, Stress Management, and Exercise D. Social Support Interventions E. Support Groups Learning Objectives 1. Describe the prevalence of chronic illness in the United States. 2. Describe how quality of life is assessed. 3. Describe the emotional responses to chronic illness. 4. Explain the role of denial, anxiety, and depression in coping with chronic illness, and explain whether these emotional reactions occur in stages. 5. Explain the psychological issues affecting the different aspects of the self (that is, physical, achieving, social, and private self) associated with chronic illness. 6. Explain the relationship of coping strategies to chronic illness. 7. Explain the role of patients’ beliefs about the nature, cause, and controllability of their illness in their adjustment to chronic illness. 8. Describe the nature of physical rehabilitation in chronic illness. 9. Describe the vocational issues associated with chronic illness. 10. Describe the social interaction problems associated with chronic illness. 11. Describe the positive changes in response to chronic illness. 12. Describe the unique issues faced by children coping with chronic illness. 13. Describe the use and effectiveness of pharmacological interventions in helping patients cope with chronic illness. 14. Describe the use and effectiveness of individual therapy in helping patients cope with chronic illness. 15. Describe the use and effectiveness of relaxation, stress management, and exercise in helping patients cope with chronic illness. 16. Describe the use and effectiveness of social support, family support, and support groups in helping patients cope with their chronic illness. Lecture Suggestions Adjusting to Chronic Illness: Stanton, Collins, and Sworowski (2001) is an excellent resource for a lecture on the complexities of adjusting to chronic illness. It examines all aspects of the process, including the impact of the disease and the treatment, environmental and cultural factors, interpersonal relationships and social support, personality factors, the importance of cognitive appraisal, and coping. Because of the diversity of problems that chronic diseases pose, people who are flexible copers may cope better than do people who engage in a predominant coping style (Cheng, Hui, & Lam, 2004). Annette L. Stanton and Tracey A. Revenson (2011) in their article provide refined perceptions of adjustments, exhibiting that the experience of chronic disease requires adaptation in numerous life domains. Treating the Chronically Ill: Fennell (2003) presents a four-phase model of treatment for the chronically ill that would serve as a base for a lecture. Premised on stage models, the phase model recognizes backward as well as forward movement. Although similar to other stage/phase models in health psychology, such as., The Transtheoretical Model of Behavior Change, this model also is distinctly different. In the typical model, once the addiction/obesity/behavior has changed, the patient is through with the stages. With chronic illness, there is no endpoint. Fennell provides descriptions of events and responses common to each phase and identifies methods of assessment and treatment. Couple-oriented interventions for chronically ill patients have generally positive effects on couple functioning and patients’ abilities to manage their symptoms (Martire, Schulz, Helgeson, Small, & Saghafi , 2010). Even briefer therapies, such as CBT conducted over the telephone, can benefit patients, enhancing a sense of personal control and reducing distress (Cosio, Jin, Siddique, & Mohr, 2011; Sandgren & McCaul, 2003; Shen et al., 2011). Children and Chronic Illness: Learning to live with a chronic illness can be very challenging for children, parents, siblings, and teachers. Approximately 18 percent of children experience a serious illness before they reach 18 years of age. Such children are more likely to experience medical visits and treatments that are either scary or painful. Children with a chronic illness may be limited in their activities, and they may feel “different” from other children. For many children, school absenteeism, problems with academic performance, and social problems may occur. Wodrich and Cunningham (2008) examine the role of school psychologists in educating the schools with regard to classroom accommodations and communication between health/medical professionals and educators. Shaw and McCabe (2008) examine various approaches and programs to help children transition between the hospital and their school. Some of those strategies include home instruction, flexible school days, and using different instruction strategies. Hope and depression are variables that may greatly affect children with a chronic illness and their families. For instance, tailoring hope-based interventions to suit a child and his/her family may help individuals cope with the illness (Venning, Eliott, Whitford, & Honnor, 2007). Venning et al. suggest that acquiring a chronic illness is more devastating to a child’s hopeful thinking than being born with the illness. On the other hand, for parents, it is the opposite. Parents’ hope is greater when the child’s chronic illness is congenital. Lastly, major depression affects 3 to 5 percent of children and adolescents (Bhatia & Bhatia, 2007). Depression has harmful effects on children as it affects growth and development, school performance, and peer or family relationships. Nearly 6 million children have asthma, and more than a third of those children require treatment in a hospital emergency room for an asthma attack each year (National Heart, Lung, and Blood Institute, 2011). Positive Psychology and Adjustment: Recently, the Handbook of positive psychology (Snyder & Lopez, 2006) provides an opportunity to examine the role of positive psychology and humankind. The handbook covers cognitive, emotion and interpersonal-focused therapeutic approaches, positive emotions, and the adaptive potential of coping. Positive psychology in practice (Linley & Joseph, 2004) includes a multidisciplinary approach in applying positive psychology to all areas of professional practice. Many chronically ill patients perceive control over what happens to them, hold positive expectations about the future, and have a positive view of themselves. These beliefs are adaptive for mental and physical health much of the time (Taylor) but they become especially important when a person faces a chronic illness. Environmental Issues: Psychosocial adjustment is often viewed only in terms of an intrapersonal activity. In contrast, Obeidallah and others (2001) use an ecosystem perspective to examine the adjustment of adolescents with diabetes. A lecture on the differential impact of neighborhoods on the chronically ill could lead to a discussion on the impact of environmental factors on adjustment and the extent of the community’s responsibility to provide supportive environments. Margaret E. Sears and Stephen J. Genuis (2012) in their article talk about how the contributors to ill health are summed up from various viewpoints—biological effects of classes of toxicants, mechanisms of toxicity, and a synthesis of toxic contributors to major diseases. Case Studies: Several vivid case studies may be found in a volume edited by McDaniel, Jepworth, and Doherty (1997) that reports case studies of therapeutic interventions with chronically ill patients and their families. The book is organized chronologically (childhood through old age), so examples from different age groups are easily available. Social Support: Social relationships affect health outcomes in a variety of ways. They can both aid and impede recovery from illness. They can act as a protection against stress-related health outcomes, and they are an important factor in quality of life issues. Chapters by Sarason, Sarason, and Gurung (2001); Chwalisgz and Vaux (2000); Heller and Rook (2001); and Revenson (2003) provide information on these and other topics. Family support is especially important: It enhances the patient’s physical and emotional functioning, it promotes adherence to treatment (Martire, Lustig, Schulz, Miller, & Helgeson, 2004), and it can improve course of illness (Walker & Chen, 2010). Recommended Reading 1. Phelps, L. (Ed.) (2006). Chronic health-related disorders in children: Collaborative medical and psychoeducational interventions. American Psychological Association. This text covers a broad range of chronic illnesses in children, viewed from well-known psychologists and experts. Fourteen chapters include the review of many disorders such as cancer, kidney disease, endocrine disorders, and craniofacial anomalies. 2. Thompson, R. J., & Gustafson, K. E. (1996). Adaptation to chronic childhood illness. Washington, DC: American Psychological Association. This text, written for advanced students and professionals, takes a biopsychosocial approach to adjustment in pediatric samples. It provides a review of chronic illness within a developmental context, and outlines treatment goals, problems in adherence, and pain management. 3. Thorne, S. E. (1993). Negotiating health care: The social context of chronic illness. Newbury Park, CA: Sage publishing. This book summarizes the findings of a qualitative study on the treatment of chronically ill patients within the health care system. Patients interviewed discuss disease onset, management, and coping efforts. 4. Uchino, B. N. (2004). Social support and physical health: Understanding the health consequences of relationships. New Haven, CT: Yale University Press. This text examines the meaning and measurement of social support, theoretical perspectives linking social support to health outcomes, social support and all-cause mortality, social support and mortality from specific causes, and pathways linking social support to health outcomes. 5. Woznick, L. A. & Goodheart, C. D. (2002). Living with childhood cancer: A practical guide to help families cope. Washington, DC: American Psychological Association. This book has not been reviewed. The following is from the flyer advertising it: “…written by two individuals who survived the stress of family cancer by mobilizing their resources and rebuilding their lives. They draw on their own family’s experience with cancer, as well as their expertise—one as a parent and the other as a psychologist. The result is a book filled with sound emotional and practical guidance.” Activities 1. The Impact of Chronic Illness: It is often useful to have students consider how their lives might be affected if they developed a chronic illness. This exercise also provides an opportunity to discuss the very high probability that students will develop one or more chronic illnesses over their lifetimes. In addition, it allows a discussion of the wide range of chronic disorders (for example., emphysema, asthma, and hearing loss) that millions of people successfully manage on a daily basis. Many students write about chronic conditions that they now are struggling to manage. Some guidelines are presented as follows: For this assignment, the students need to select one of the chronic illnesses discussed in class or in the text, and consider the ways in which their life might change if they had to cope with this condition on a daily basis. Then ask the students to consider their physical environment, their daily activities, their relationships with other people, and so on, and then ask them to write an essay that addresses the following points: Which chronic illness or disorder did they select? What symptoms are characteristic of this condition? What is the prognosis? What particular aspects of this illness may be particularly problematic in managing the day-to-day aspects of their illness? Would any aspects of their physical environment have to be modified? Which ones? Why? Would they need to change or modify any of their daily activities due to the demands of this condition? Which ones? Why? Would they expect any of their relationships (from casual acquaintances to intimates) to change? Why? Do they feel that they might need a particular type of social support? Why? Do they feel that their social network could provide them with effective social support? Why or why not? Do they feel that their support network would be strained because of their condition? Why or why not? 2. Chronic Illness Among African Americans: To increase the students’ understanding of the variations in chronic illnesses among ethnic groups, a worksheet with fact-based and discussion questions can be used. One such activity is found in Whittlesey’s (2001) Diversity activities for psychology. There is a worksheet and a list of recommended readings. An instructor’s manual is available from the publisher. 3. Support Groups: Invite a representative from a social support group (such as a Reach to Recovery volunteer) to speak to the class about the group’s functions, members, and so on. A listing of organizations is usually available from local hospitals and county and state agencies. Videos 1. American Psychological Association available at www.apa.org APA psychotherapy videotape series III: Chronic illness. Features a 20-minute face-to-face interview with a therapist, Dr. Len Sperry, whose practice focuses on individuals with chronic illness. It is followed by a therapeutic session led by Dr. Sperry and a post session debriefing with the host. APA encourages using appropriate portions of the tape to support teaching objectives. Although not a dynamic presentation, the face-to-face interview is the only segment suited to this course. 2. Fanlight Productions available at www.fanlight.com Stories of lupus (1999): This is an excellent video for this chapter. It provides students with knowledge about a disease of which many know nothing. It also highlights many of the issues that the text points out about living with a chronic illness, for example, stigma, uncertainty, physical problems, family support, and lack thereof. 3. Films for the Humanities & Sciences available at http://ffh.films.com Living with arthritis (2005). One out of three American adults suffers from arthritis or joint problems. This video examines the different types of arthritis, arthritis treatment, and how to live with it. COPD (2006). Chronic obstructive pulmonary disease is explained. Cases studies are examined. Deeply depressed. (2006). Chronic depression is viewed as a physical disease. Symptoms and treatments are examined. Coping with illness. (2001) A three-part series examines reducing the risks of cardiovascular diseases, dealing with cancer, and living with today’s maladies. Angela’s journey. (2005): Angela is a bright, attractive young mother with two small children, and terminal breast cancer. This candid, compelling documentary follows Angela as she visits her physician and explores treatment options, while dealing with issues of body image, loneliness, and romance —and trying to pack 20 years of mothering into five. (49 minutes) Anemia falciforme: Los rostros de nuestros niños. (1999). This film depicts the devastating impact of sickle cell disease on young individuals and their families. Beauty does lie. (2006). Approximately 15 million Americans, of which 75% are women, are living with chronic and devastating autoimmune diseases. This documentary explores the lives of seven African American women with Lupus, MS, Sjogren’s syndrome, pernicious anemia, and myasthenia gravis. Breathe easy. (2007). This film depicts a 78-year-old female with emphysema and her journey through her life. 4. ABC News video clips available at http://abcnews.go.com/search?searchtext=living%20and%20dying%20with%20musculuar%20dystrophy&type= Living and dying with muscular dystrophy (2007). This ABC News Program examines a young man with Duchene muscular dystrophy which is the most frequently occurring fatal genetic disease among children. Living with back pain. (2007). An ABC News Program that provides tips to treat and avoid back pain References Bhatia, S. K., & Bhatia, S. C. (2007). Childhood and adolescent depression. American Family Physician, 75, 73–80. Boice, M. M. (1998). Chronic illness in adolescents: Chronic illness in adolescence. Adolescence, 33, 927–939. Carver, C. S., & Scheier, M. F. (2002). Coping processes and adjustment to chronic illness. In Christensen, A. J., & Antoni, M. H. (Eds.), Chronic physical disorders: Behavioral medicine’s perspective (pp. 47–68). Oxford, U.K.: Blackwell. Chwalisz, K., & Vaux, A. (2000). In R. G. Frank & T. R. Elliott (Eds), Handbook of rehabilitation psychology (pp. 537–552). Washington, DC: American Psychological Association. Devellis, Lewis, and Sterba (2003) apply the social psychological literature on emotion control to adjustment to chronic illness. Several chapters in Christensen and Antoni’s (2002) edited book address these issues. DeVellis, R. F., Lewis, M. A., & Sterba, K. R. (2003). Interpersonal emotional processes in adjustment to chronic illness. In Suls, J., & Wallston, K. A. (Eds.), Social psychological foundations of health and illness (pp. 256–287). Malden, MA: Blackwell. Dunbar-Jacob, J., Schlenk, E. A., & Caruthers, D. (2002). Adherence in the management of chronic disorders. In Christensen, A. J., & Antoni, M. H. (Eds.), Chronic physical disorders: Behavioral medicine’s perspective (pp. 69–82). Malden, MA: Blackwell. Fennell, P. (2003). Managing chronic illness using the four-phase treatment approach: A mental health professional’s guide to helping chronically ill people. Hoboken, NJ: John Wiley & Sons. Helgeson. V. S., & Reynolds, K. A. (2002). Social psychological aspects of chronic illness. In Christensen, A. J., & Antoni, M. H. (Eds.), Chronic physical disorders: Behavioral medicine’s perspective (pp. 25–46). Malden, MA: Blackwell. Heller, K., & Rook, K. (2001). Distinguishing the theoretical functions of social ties: Implications for support intervention. In B. Sarason & S. Duck (Eds.), Personal relationships: Implications for clinical and community psychology (pp. 119–140). New York: Wiley. Kaplan, R. M. (2002). Quality of life and chronic illness. In Christensen, A. J., & Antoni, M. H. (Eds.), Chronic physical disorders: Behavioral medicine’s perspective (pp. 1–24). Malden, MA: Blackwell. Linley, P. A. & Joseph. S. (Eds.), (2004). Positive psychology in practice. New York: NY: John Wiley & Sons. McDaniel, S. H., Hepworth, J., & Doherty, W. J. (Eds.) (1997). The shared experience of illness: Stories of patients, families, and their therapists. New York: Basic Books. Obeidallah, D.A., Hauser, S.T., & Jacobson, A.M. (2001). In A. Baum, T. A. Revenson, & J. Singer (Eds.), Handbook of health psychology (pp. 441–448). Mahwah, NJ: Lawrence Erlbaum. Revenson, T. A. (2003). Scenes from a marriage: Examining support, coping, and gender within the context of chronic illness. In Suls, J., & Wallston, K. A. (Eds.), Social psychological foundations of health and illness (pp. 530–559). Malden, MA: Blackwell. Sarason, B., Sarason, I., & Gurung, R. (2001). Close personal relationships and health outcome: A key to the role of social support. In B. Sarason & S. Duck (Eds.), Personal relationships: Implications for clinical and community psychology (pp. 15–41). New York: Wiley. Shaw, S. R., & McCabe, P. C. (2008). Hospital-to-school transition for children with chronic illness: Meeting the new challenges of an evolving health care system. Psychology in the Schools, 45, 74–87. Sidell, N. L. (1997). Coping with chronic illness: Adult adjustment to chronic illness: A review of the literature. Health and Social Work, 22, 5–11. Snyder, C. R., & Lopez, S. J (Eds.), (2005). Handbook of Positive Psychology. New York: Oxford University Press. Stanton, A. L., Collins, C. A., & Sworowski, L. (2001). Adjustment to chronic illness: Theory and research. In A. Baum, T. Revenson, & J. Singer (Eds.), Handbook of health psychology (pp. 387–403). Mahwah, NJ: Lawrence Erlbaum. Travis, C. D., & Compton, J. D. (2001). Feminism and health in the decade of behavior. Psychology of Women Quarterly, 25, 312–323. (and summary slides) Venning, A. J., Eliott, J., Whitford, H., & Honnor, J. (2007). The impact of a child’s chronic illness on hopeful thinking and children and parents. Journal of Social and Clinical Psychology, 26, 708–727. Whittlesey, V. (2001). Diversity activities for psychology. Boston: Allyn and Bacon. Wodrich, D. L., & Cunningham, M. M. (2008). School-based tertiary and targeted interventions for students with chronic medical conditions: Examples from type 1 diabetes mellitus and epilepsy. Psychology in the Schools, 45, 52–62. Chapter 12 Psychological Issues In Advancing And Terminal Illness Chapter Outline I. Death Across the Life Span A. Death in Infancy and Childhood B. Death in Adolescence and Young Adulthood C. Death in Middle Age D. Death in Old Age II. Psychological Issues in Advancing Illness A. Continued Treatment and Advancing Illness B. Psychological and Social Issues Related to Dying C. The Issue of Nontraditional Treatment III. Are There Stages in Adjustment to Dying? A. Kübler-Ross’s Five-Stage Theory B. Evaluation of Kübler-Ross’s Theory IV. Psychological Management of the Terminally Ill A. Medical Staff and the Terminally Ill Patient B. Counseling with the Terminally Ill C. The Management of Terminal Illness in Children V. Alternatives to Hospital Care for the Terminally Ill A. Hospice Care B. Home Care VI. Problems of Survivors A. The Survivor B. Death Education Learning Objectives Summarize the trends in infant mortality in the United States, and describe the main causes of death in infancy and early childhood. Describe the main causes of death in adolescence and adulthood. Describe the nature of gender differences in mortality. Describe the psychological issues associated with continued treatment and advancing illness. Describe the Patient Self-Determination Act, and explain the issues associated with euthanasia and assisted suicide. Describe the changes in patient’s self-concept that are associated with advancing illness. Explain the issues of social interaction, communication, and nontraditional treatment associated with advancing illness. Explain Kübler-Ross’s Five-Stage theory, and evaluate its value as a model of death and dying. Describe the significance of the medical staff to the terminally ill patient. Describe the physician’s role and the role of other medical staff in terminal care. Describe the nature of individual counseling and family therapy with the terminally ill. Describe the nature of the management of terminal illness in children. Describe the nature of hospice care and home, and evaluate the effectiveness of each. Describe the problems faced by the adult and child survivors. Describe the nature of death education. Lecture Suggestions The Terminal Phase of Life: Lynn and Harrold’s (1999) Handbook for mortals is a comprehensive guide helping individuals to deal with end of life care. Stevens et al. (2007) examine the palliative care needs of stroke patients. Balk (2008) reviews a special issue on bereavement, outcome, and recovery. The special issue includes the following articles: Recovery following bereavement: Metaphor, phenomenology, and culture (Rosenblatt, 2008); Recovery in context: Bereavement, culture and the transformation of the therapeutic self (Paletti, 2008); Beyond the concept of recovery: Growth and the experience of loss (Tedeshi, & Calhoun, 2008); whose recovery, of what? Relationships and environments promoting grief and growth (Shapiro, 2008); Resilience rather than recovery: A contextual framework on adaptation following bereavement (Sandler, Wolchik, & Ayers, 2008); what is “No recovery?” (Kauffman, 2008); A model proposal about bereavement and recovery (Balk, 2008). John-Paul Ford Rojas (2012) in his article “Terminal illness sufferers 'should be allowed help to die' says new minister” talks about legalizing assisted suicide in Britain for patients who have no cope for recovery from terminal illnesses. Death and Burnout Among Health Care Practitioners and Families: This topic may supplement the text’s presentation of survivors’ reactions to death and introduce interventions to facilitate coping with death-related burnout. Mechanisms of support and coping are reviewed to better understand how to help health care providers who work with children nearing death (Dixon et al., 2005). Caring for people at the end of life challenges health professionals’ sense of self (Currow & Hegarty, 2006). How can health professionals create an environment that deals with suffering and helplessness? Ufema (2002) examines several questions and answers related to nursing practices dealing with dying patients. Jeannie P. Cimiotti (2012) in a recent article “Nurse staffing, burnout, and health care–associated infection” provides an overview about hospital infections contracted by patients who are admitted, and the role of the nursing staff in spreading these infections. This article attempts to find an association between the nursing staff and patient infection. Expressing One’s Grief and Bereavement: As mentioned in the text, George Bonanno and colleagues (Bonanno & Keltner, 1997; Bonanno, Keltner, Holen, & Horowitz, 1995; Horowitz & Bonanno, 1993) are making the often controversial assertion that expressing one’s grief is not associated with positive adjustment to the loss of a loved one. This research might be discussed in light of Pennebaker’s work on catharsis and coping (see Chapter 7) and the cross-cultural perspectives on grief and bereavement from this chapter. Rolls and Payne’s (2007) study indicates that children who lost a parent often experience difficulties in managing and expressing their feelings. Children who feel isolated have problems at school and are fearful for their surviving parent’s health. Stroebe and Schut (2006) examine attachment, internal representations of the self and others, and patterns of disclosure during the coping process. Their findings indicate that secure individuals are different from insecure individuals with regard to expressing emotions and writing or talking about emotional experiences. Glazer and Marcum (2003) describe the use of storytelling to help children adjust to the death of a family member or friend. Their results indicate that children are able to use narrative to express grief and loss and that artwork helps them express their grief. Nadine M. Melhem (2011) in her article “Grief in Children and Adolescents Bereaved by Sudden Parental Death” describes how children and adolescents are impacted by the trauma of their parents’ sudden death. This article explores the psychological influence of such trauma on children. Attitudes Toward Death—Terror Management Theory “TMT”: Ernest Becker (1973) believed that humans are terrorized of death and of all the horrors associated with one’s own mortality. TMT provides a useful approach to understand the reasons behind people’s behavior. For instance, death-related thoughts raised by witnessing an accident will lead individuals to seek distractions such as turning the music on or making plans for the evening (Pyszczynski, Greenberg, Solomon, 1999). Arndt et al. (2007) use TMT to understand cancer and the threat of death. Recently, hundreds of empirical studies (see http://www.tmt.missouri.edu/) have shed light on understanding why people do the things they do, especially when faced with the potential terror of their own death. A recent article in Science Daily “Accepting the End: Bucket Lists, Cemeteries Show Changing Attitudes Toward Death” (2012) talks about death and the changing perspectives about death. The article discusses life goals that every individual wants to achieve before death, and also how the acceptance of death has slowly started increasing. Recommended Reading Brody, E. B. (1993). Biomedical technology and human rights. Aldershot, MA: Dartmouth Publishing. This book, directed at a professional audience, discusses human rights and biomedical ethics in several cultural and medical contexts. Of particular interest is a chapter on the ethical issues of sustaining the life of dying or comatose patients. Dickinson, D., & Johnson, M., Jeanne Katz (1993). Death, dying, and bereavement. London: Sage Publications. This edited book, written for advanced students and professionals, addresses topics such as pain control, guidelines for counseling the bereaved, attitudes toward euthanasia, and so on. It also contains anecdotes and interviews with patients, family members, and caregivers. Kübler-Ross, E. (1969). On death and dying. New York: Macmillan. This book originally presented Kübler-Ross’s theory to the general audience. It provides a rich description of the personal and social processes associated with dying in this culture. It also contains revealing interviews with patients, practitioners, and family members. Somerville, M. A. (2002). Death talk: The case against euthanasia and physician-assisted suicide. McGill-Queens University Press. This book examines euthanasia, genetics, reproductive technologies, and the search of a new societal paradigm. Somerville also examines difficult issues from allocating medical resources to legalizing euthanasia. Svenson, A. G., & Behuniak, S. M. (2002) Physician-assisted suicide: The anatomy of a Constitutional law. Rowman & Littefield Publishers. This book examines the patient’s right to die with their physician’s assistance and laws that prohibit such help. Activities Oregon: Have the student’s research assisted-laws in the state of their university. Is it legal or illegal? How do the state’s laws compare and contrast with the law in Oregon? Each student should write a letter to their Senator with his or her stand on the topic using the research and the text to back it up. Ask the students to develop and implement an Advanced Directive: The American Bar Association website provides information on developing an advance directive. The web links for these resources are listed below. They are an effective exercise for students to complete as well as a resource for them to use with clients. Consumer’s toolkit: Consumer’s Tool Kit for Health Care Advance Planning. 10 Legal Myths: 10 Legal Myths About Advance Medical Directives. http://www.uslivingwillregistry.com/: U.S. Living Will Registry. http://medicaring.org/: Palliative Care Policy Center: This website offers information and support to hospitals, nursing homes, health systems, hospices, and other organizations that serve individuals nearing the end of their life. http://depts.washington.edu/bioethx/topics/pad.html: Ethics in medicine: physician-assisted suicide. A website that provides information about physician-assisted suicide. Videos Family caregivers. (1992). Examines the stress associated with caring for an ill family member. Provides some suggestions for support resources. http://lifecenter.ric.org/index.php?tray=content&tid=top2&cid=53 Fanlight Productions available at www.fanlight.com Bearing witness: Jocelyn Morton. (2003). Jocelyn’s struggle with cancer and surrender. Caring at the end of life. (2001). Documentary about a comatose patient and the family’s conflict over how long to continue with treatment that keeps him alive. The chemo ate my homework. (2006). Documentary exploring kids with cancer, their surgeries, radiation, and chemotherapy. A family undertaking. (2003). Documentary exploring the complex psychological, cultural, legal, and financial issues surrounding the home funeral movement. Grief in America. (1997). Follows the stories of six people from different ethnic and social backgrounds who have experienced the death of a loved one. It includes information from a variety of professionals. How I coped when Mommy died. (1999). An inspiring video by a 13-year-old boy whose mother died of breast cancer when he was 10. He talks about his fears of his mother dying, his numbness following her death, and the support that helped him learn to live his life again. Films for the Humanities & Sciences available at http://ffh.films.com A death of one’s own. (2000). Controlling where and how one dies is becoming an important issues to more and more Americans. Veteran PBS journalist Bill Moyers unravels the complexities underlying the many choices at the end of life, including the bitter debate over physician-assisted suicide. A different kind of care. (2000). Bill Moyers presents the important developments in palliative care at pioneering institutions such as New York’s Mt. Sinai Medical Center and Memorial Sloan-Kettering Cancer Center. Palliative care relieves the fear that one will be a burden to loved ones, will suffer needlessly, or will be abandoned in their hour of greatest need. References Arndt, J., Cook, A., Goldenberg, J. L, & Cox, C. R. (2007). Cancer and the threat of death: The cognitive dynamics of death-thought suppression and its impact on behavioral health intentions. Journal of Personality and Social Psychology, 92, 12–29. Balk, D. E. (2008). A model proposal about bereavement and recovery. Death Studies, 32, 84–93. Balk, D. E. (2008). Special issue on bereavement, outcome and recovery: Guest Editor’s opening remarks. Death Studies, 32, 1–5. Becker, Ernest. (1973). The denial of death. New York: Free Press. Bonanno, G. A., & Keltner, D. (1997). Facial expressions of emotion and the course of conjugal bereavement. Journal of Abnormal Psychology, 106, 126–137. Bonanno, G. A., Keltner, D., Holen, A., & Horowitz, M. J. (1995). When avoiding unpleasant emotions might not be such a bad thing: Verbal-autonomic response dissociation and midlife conjugal bereavement. Journal of Personality and Social Psychology, 69, 975–989. Currow, D., Hegarty, M. (2006). Suffering—At the bedside of the dying. Journal of Religion, Spirituality & Aging, 18, 123–136. Dixon, D., Vodde, R., Freeman, M., Higdon, T., Mathiesen, S. G. (2005). Mechanisms of support: Coping with loss in a major children’s hospital. Social Work in Health Care, 2005, 41, 73–90. Glazer, H. R., & Marcum, D. (2003). Expressing grief through storytelling. Journal of Humanistic Counseling, Education & Development, 42, 131–140. Horowitz, M. J., Bonanno, G. A., & Holen, A. (1993). Pathological grief: Diagnosis and explanation. Psychosomatic Medicine, 55, 260–273. Kauffman, J. (2008). What is “No recovery?” Death Studies, 32, 74–83. Lynn, J., & Harrold, J. (1999). Handbook for Mortals: Guidance for people facing serious illness. Oxford University Press. Nelson, L. D., & Nelson, C. C. (1975). A factor analytic inquiry into the multidimensionality of death anxiety. Omega: Journal of Death and Dying, 6, 171–178. Paletti, R. (2008). Recovery in context: Bereavement, culture and the transformation of the therapeutic self. Death Studies, 32, 17–26. Pyszczynski, T., Greenberg, J., & Solomon, S. (1999). A dual process model of defense against conscious and unconscious death related thoughts: An extension of Terror Management Theory. Psychological Review, 106, 835–845. Rolls, L., & Payne, S. A. (2007). Children and young people’s experience of UK childhood bereavement services. Mortality, 12, 281–303. Rosenblatt, P. (2008). Recovery following bereavement: Metaphor, phenomenology and culture. Death Studies, 32, 6–16. Sandler, I. N., Wolchik, S. A., & Ayers, T. S. (2008). Resilience rather than recovery: A contextual framework on adaptation following bereavement. Death Studies, 32, 59–73. Shapiro, E. R. (2008). Whose recovery, of what? Relationships and environments promoting grief and growth. Death Studies, 32, 40–58. Stevens, T., Payne, S. A., Burton, C., Addington-Hall, J., & Jones, A. (2007). Palliative care in stroke: A critical review of the literature. Palliative Medicine, 21, 323–331. Stroebe, M., Schut, H., & Stroebe, W. (2006). Who benefits from disclosure: Exploration of attachment style differences in the effects of expressing emotions. Clinical Psychology Review, 26, 66–85. Tedeschi, R. G., Calhoun, L. G. (2008). Beyond the concept of recovery: Growth and the experience of loss. Death Studies, 32, 27–39. Ufema, J. (2002). Insights on death and dying, Nursing, 32, 28–30. Instructor Manual for Health Psychology Shelley E. Taylor 9780077861810
