https://nursingpaperspros.com/wp-content/uploads/2020/05/logo-nursing--300x60.png 0 0 Hector https://nursingpaperspros.com/wp-content/uploads/2020/05/logo-nursing--300x60.png Hector2020-06-07 18:04:132020-06-07 18:04:13Identify ways nurses can create an ethical environment when they care for patients with chronic disease and illness.
Adult Lealth Nursing Ethics mie B. Butts OBJECTIVES After reading this chapter, the reader should be able to do the following: 1. Explore the concept of medicalization as it relates to the societal shift away from physician predominance of the 1970s. 2. Differentiate among the following terms: compliance, noncompliance, adherence, nonadherence, and concordance. 3. Examine cultural views with regard to self-determination, decision making, and American healthcare professionals’ values of medicalization and treatment regimens. 4. Identify ways nurses can create an ethical environment when they care for patients with chronic disease and illness. 5. Explore a utilitarian or deontology framework to justify the use of various organ procurement methods. 6. Analyze the Organ Procurement and Transplantation Network’s guiding factors for allocation of organs across the United States. Define death in relation to the Uniform Determination of Death Act of 1981 o. Explore the rationale for the two guiding moral principles of the dead donor rule. %. Delineate the nurse’s role in terms of essential aspects of the American Nurses Association’s Code of Ethics for Nurses with Interpretive Statements in the care of adult patients undergoing organ donation and transplantation. Medicalization terms, described using medical language, un derstood through the adoption of a medica framework, or treated with a medical inter vention” (Conrad, 2007, p. 5). Cure over care i an emphasis in the medical model. Specifically medicalization is an illness, disorder, or dis ease that is not ipso facto a medical problem Lization developed from a process by medical professionals diagnose hu- cial problems, disorders, and syn- 15 medical conditions. Medicalization ce that is defined in medical an social proble comes as medic an occurrence 160
rather, IlleLUJ IU the problem to become medicalized (Conrad Lietyst and treatment dical professional od treatments & h physicians to ficant degreto Shifted some of the physicians, ce a few hegemors ofession in regard dicalization will.com dominant force for to new possibilities in diagnoses and As the 1990s ended, medical 2007, p. 6). dominance in health care and trea After considerable scrutiny by society in the media and literature, the concept of med- minished somewhat, although phys icalization evolved over a number of years, tinue to practice with a significant mainly because of changes in the medical control. As the market has shifted process and the healthcare system (Conrad, traditional power away from 2007). Some critics have expressed that medi- consumers still experience at calization has transformed nonmedical, social, practices by the medical professi or personal problems into medical condi- their health care, and medicalizat tions and therefore has narrowed the range of tinue to be somewhat of a domin problems of what is considered acceptable for everyday living (Illich, 1975/2010). Medical wide range of human problems. professionals classify and label the symptoms and decide who is sick. What some individuals Compliance, Adherence. or groups perceive as advantages to medical and Concordance ization may be perceived as disadvantages by others and vice versa. By labeling social con- The terms compliance, adherence, and comes ditions as medical problems, medicalization dance fall under the umbrella of medicali has allowed for the extension of the sick role, tion. In the healthcare context, compliance reduced individual blame for the problem, and refers to a patient’s written or unwritte led to a focus on the individual rather than the approval of a provider’s medical treatment social context. On the other hand, many peo or a nurse’s healthcare regimen, which ple have been helped by medications and treat resents the patient’s intentions of following ment for their problems, such as alcoholism, erectile dysfunction, baldness, and many more the wishes of the provider and the suggestel human conditions. course of treatment. Compliance borders Even though physicians remain the gate- coerciveness and could indicate a paternalisa keepers for medical treatment and continue to approach that persuades patients to behave i treat most disorders, three market-driven in- a submissive manner to a prescribed regime In the past decades, society realize decline in the use of the term compliance cause of certain negative connotation healthcare providers might interpretas compliance if they perceive a certain of incompetence and deviance when ing nonconforming patient behaviors noncompliance remains a persisten terests continue to expand the medicalization of society: (1) managed care; (2) biotechnol- ogy, such as genetic possibilities and pharma- ceutical treatments; and (3) consumers. The trend for labeling human social conditions as medical problems continues to increase, with no signs of waning (Conrad, 2007). As the shift to managed care emerged, patients began to think like consumers when it comes to the medical care they receive, the providers they want, and the types of health insurance policies they can purchase. Patients as consumers became more vocal and active in their own care and demanded more services. During the same era, pharmaceutical compa- nies made enormous profits, and continue to ph the enc Orc treat persistent and their approut (197 Invention d i but by nurses broadening their ap: compliance, more effective inven result (Berg, Evangelista, & D 2002). In 1978, Barofsky discussed of patient responses to healthca treatments: (1) compliance; (2) ad nersh ta, & Dunbur Provid Assed the corda: patien and wi and ho Wadheren (3) concordance which Ban as therapeutic alliance. Th still h Barofsky chara These ne
compliance MA biance meansercion, adherence means and concordance is a therapeutic ce between the providers of care and the alliance between patient adherence. It became as medicines will be taken (Horne et al., 2005). Providers have engaged in concordance more in the United Kingdom than in any other country. The practice of concordance has many advantages, but the term needs more conceptualization and understanding for its increased use in medical and nursing prac- tice. Providers who practice concordance have encountered frequent issues when it comes to discriminating concordance from compliance and adherence. Conformity is not the only way to define rence. It became substitute for compli- in an attempt to deemphasize provider trol and emphasize patient choice in treat- s and whether the patient chooses to to a prescribed medical regimen. A more specific definition of adherence is the extent to which patients’ behaviors match the recommendations agreed upon by the provider or nurse and the patient (Horne, Weinman, Barber, Elliott, & Morgan, 2005). Providers often use the term nonadher- ence to indicate an all-or-nothing patient ap- proach, meaning that patients follow either the entire treatment regimen or none of it. The extent to which a desired treatment plan or ther- apeutic result is unlikely to be realized seems to more comprehensively capture the meaning of nonadherence. Patients cite unintentional and intentional reasons for not adhering to a treat- ment plan. Unintentional reasons for nonad- herence include financial or other constraints or limitations of memory or dexterity; intentional reasons occur when the patients’ beliefs, atti- tudes, and expectations from their family’s value system differ from the treatment plan. Patient unerence or nonadherence should not be char- acterized as good or bad; instead, it should be dered high or low adherence Nurses and physicians of sicians often find it difficult to determine of adherence because during a clinical unter, patients do not necessarily mention carly verbalize how well they adhere to the Valuing Self-Determination in a Medicalized Environment Within the healthcare system today, doing more work with fewer resources is a concern when providers plan strategies to improve a person’s health. Promoting healthy behaviors and prescribing treatment regimens yet trying to respect one’s rights to self-determination is a complex situation. One ethical question that needs to be answered is how far providers of care should go in terms of respecting the aus tonomy of patients when some of the patients behaviors burden society with enormous costs, both in terms of money and other resources. If providers and nurses are to practice ethically they need to avoid paternalistic and coercive behaviors when educating patients on strate- gies to promote healthy behaviors (Berg et al. 2002). Self-determination and decision making are critical elements in the principle of respect for autonomy. Married couples and cohabiting for autonomy. Mar partners often make healthcare decisions to gether (Osamor & Grady, 2018). Whether deci- sions are made jointly or individually, a careful balance between a person’s freedom from con- trolling influences and capacity for intentional action is necessary. The principle of respect for autonomy means that healthcare professionals the level of adhere of dearly verbaliz treatment plan. ndicates am tership, to the Corder and the patienccotiation Gordant agreeme pavent and the and wishes of the and bow treat oncordance is similar to Barofsky’s m therapeutic alliance, Concordance S a more shared approach, or part- to the treatment plan between the and the patient. Important to a con- Sreement is a negotiation between the the provider regarding the beliefs the patient and whether. when ents will he administered and respect patients’ choices and their right to their opinions. While respecting the principle for autonomy providers should offer information autonomy, provid on efficient, cost-containing treatments with a balance between risks and benefits of the proposed treatments, the costs to society for
od to be treated with respect. Nursing une is respectful and unrestricted considerations of a colour, creed, culture, disability of thess, gender. sexual orientation, nationality, politics, race or social status. (Preamble, para. 2) Often, though, chronic disease is manageable (Martin, 2007). Even with exponential advances in medical technology and treatments, the num- ber of people with chronic disease has continued to increase very rapidly in the past few decades ETHICAL REFLECTION EXPLORE YOUR EXPERIENCE WITH MEDICALIZATION RESEARCH NOTE: STATISTICS ON CHRONIC DISEASES LEADING TO DEATH OR DISABILITY IN THE UNITED STATES, 2012-2014 Discuss one situation in which you have experienced the effects of medicalization and a treatment regimen for a patient. This scenario can come from a personal family experience or your own nursing practice, ether as a nurse or a student. Explore the dynamics you observed among nurses and other providers of care, the healthcare system, and the family that influenced the patient’s choice of treatment and outcomes. Describe the provider and nurse practice approaches in terms of their use of concordance, compliance, and adherence. Discuss if and to what extent you observed a balance, if any, between patient choice and provider-prescribed treatment. Consider your perceptions of the degree to which providers and nurses exercised paternalism and respected human dignity, cultural values, and autonomy. What ethical framework would guide your practice to facilitate meeting moral obligations described by the ANA and ICN codes of ethics? Consider a framework of Utilitarianism, deontology, or virtue ethics Please explain your rationale. Most common and costly, but most preventable, chronic diseases include heart disease, stroke, cancer, type 2 diabetes, obesity, and arthritis. In 2012, 117 million adults had a chronic health condition One of four adults in the United States had two or more chronic health conditions in 2012. Seven of 10 causes of death in 2014 were due to chronic disease Heart disease and cancer, two of the chronic diseases, accounted for nearly 46% of all deaths. Source: Centers for Disease Control and Prevention (CDC).(2017, June 28). About chronic diseases. Retrieved from https://www.cdc gowchronic disease about/index.htm A few experts from different areas of the world label some diseases as lifestyle diseases because of their connection to lifestyle choices, such as smoking, the harmful use of alcohol and other drugs, an unhealthy diet, and physical inactivity. Some people have even questioned whether restricted and rationed access and resources to treatments for some lifestyle-related chronic diseases could be a justified ethical decision. As much as 25% of the global burden of disease is a consequence of lifestyle choices and behaviors, and this statistic is rapidly rising, In fact, the World Health Organization (WHO) predicted that by 2020, 7 of every 10 people in developing countries–twice as many as today- will develop a lifestyle-related chronic disease and other noncommunicable diseases (WHO, Chronic Disease and illness The leading caus the United Sta nerally characten og lasting ading cause of death and disability in nited States is chronic disease, which is y characterized by multiple etiologies, sling course of illness, and no cure.
174 Chapter 7 Adult Health Nursing bile of pain and sufferin experience a longer life of pa Carter, Walker, and Furle 602) attempted to atively and more views with par of themes, bu 2014). Additionally, noncommunicable diseases are a leading cause of death in the world. In 2012, for instance, 68% of all deaths were due to noncommunicable diseases (WHO, 2014). Chronic illness refers to people’s percep tion of their quality of life and the difficulty of living with and experiencing a chronic disease (Martin, 2007). People with chronic disease ex- perience a collection of symptoms they describe as long-term affliction and suffering. The odds for a longer life span increase due to technol ogy advances and better treatments, but con- sidering this statistic, whether viewed as good or bad, people with chronic disease and illness define chronic illness cualitatively comprehensively through interviews w ticipants and an extrapolation of the after analyzing the findings, the Ch Alliance never agreed or a univere of chronic illness. What is intere research are the comments mad ticipants about their experiences with che illnesses and how those illnesses have aff their lives. Most participants saw ch ness as a negative state that robs the hope for recovery. the Chronic Wines universal definition is interesting in this nts made by the par ants saw chronic ill robs them of a pract: RESEARCH NOTE: SHARED MEANING OF CHRONIC ILLNESS- PARTICIPANTS’ VIEWS Participants in this Australian study reported their lived experiences with various chronic illnesses Arthritis or musculoskeletal diseases topped the list of the 27 diseases and illnesses, followed by mental depression, multiple sclerosis, breast cancer, chronic pain, asthma, epilepsy, stroke, thyroid problems, and hypertension. Other diseases were less frequent. The researchers extrapolated nine major themes from the narratives of the 43 participants’ lived experiences. The themes are as follows: • Social impact of living with a chronic illness: This theme includes the following: (1) not being able to work (2) living with an illness that will lead to dependency or even death, poverty, isolation and loneliness; and (3) requiring many types of support in the home. Relationship between the patient with a chronic illness and medical providers: Patients felt that healthcare providers were frustrated by their chronicity, the healthcare staff were not property trained to care for them, the medical model was dominant in terms of the many treatments and medications that did not seem to help, there was poor medical management, and the treatme were inconsistent Ethic Carter cant gb patient fundar feeling and di three cc tion issu Pat ness fre controlli in contro Carter c Stigma associated with chronic illness: Patients had feelings of discrimination and stigmatiza friends and family told the loved one to try harder, patients were labeled as noncompliant medical and nursing providers if they did not or could not follow the regimen, and patien labeled as difficult if they verbalized that the regimen was not working well. Labeling and classification: Patients felt that being labeled or classified in certain meo brought about negativity from the wider global perception, and terms such as chronic standing, and long term were labels that brought about discrimination. • Need for a new definition of chronic illness: Patients desired a new definition with a perspective on chronic illness that includes the complexity of their experiences with Winess. the norge power in patients and patients were Con in certain medical language erms such as chronic, long on with a broader nces with the chronic Essential features of chronic illness: Patients believed their chronic illness had the • Ongoing and problematic • Quality of work compromised • Relationships compromised Lifelong and substantial commitment by caregiver • Elements of uncertainty viders m control. harm to t fessionals control th Cathe on chronic chronic illo syndrome, intestinal p: digestion. suffering for ad the following featu
Chronic Disease and illness 175 . Expensive treatments and visits to providers • Incurable • Untreatable • Requires complex and ongoing management . Life threatening • Unresolved • Complex • Permeates the whole of life • Fatigue • Need for a health promoting definition of chronic illness: Patients desired a new health promoting definition to help others understand their difficulties and needs. Consumers’ views that policies should account for chronic illness: Patients feared that society and the government would punish them for their chronic illness. Chronic illness and activism: Patients desired a commitment to fight for their rights. Data from Walker, C. & Markes, S. (2002). Developing a shared definition of chronicles The implications and benefits formero proc (GPEP 843: Final Report). Chronic liness Alliance, Inc. Victoria: Health issues Center Ethical Concerns and Suffering Carter et al’s (2002) study uncovered signifi cant global implications for those who care for patients with chronic disease and illness. Some fundamental ethical concerns are a patient’s feeling of a lack of control, patient suffering, and difficulty in accessing services. These three concerns likely relate to the medicaliza- tion issues discussed in the previous section. Patients with chronic disease and ill- ness frequently feel as if their illnesses are controlling them rather than feeling they are In control of their own lives. As indicated in Carter et al. (2002) findings, the reality of power imbalances between vulnerable feeling patients and the persuasion of healthcare pro- of lack of viders magnifies negative feelings of li control. Unless patients are inclined to cause arm to themselves or others, healthcare pro- Csionals need to honor patients’ desires to control their own lives. work Catherine Garrett (2004) based her wor hronic illness and suffering on her own hic illness experience with irritable bowel me, a cluster of symptoms of gastric pain, nal pain and spasms, and malfunctioning on. Garrett has lived with this pain and 8 for more than 50 years and her desire in writing her book was to recount and share her story and scholarly research on sickness, disability, violence, grief, loss, confusion, and despair. These symptoms make up what she calls her suffering. Garrett explained suffering in chronic illness as just one of many types of suffering that has characteristics similar to how dying patients and families often describe their torment. Her work was a quest for the physical, emotional, intellectual, and spiritual compo nents that link chronic illness and suffering, – Chronic illness results in a persistent, ongoing, and unhealing suffering, and if any inseparable part suffers, the whole person suffers. Chronic conditions produce enor mous demands and conflicts, to which eh person must respond. Patient suffering rel tent suffering related to chronic disease and illness results from combination of unrelieved pain the st chronic illness, and disparities of living with the potential consequences of a perceived re- duced quality of life. Patients with chronic dis- case and illness often feel alone and miserable and signs of suffering become chronically ill patients strupe ich meaning to their suffering through so nation of unrelieved pain, the stigma of suffering become evident. Many patients struggle with trying to vyndrome, a cluster of intestinal pain digestion. Gan suffering for me searching and spirituality to find have to suffer so much. The clude that they cause their uality to find out why they much. They sometimes con- cause their own suffering.
Providing Ethical Care How do nurses provide care for patients with chronic disease and illness? Two strong themes came from Carter et al’s (2002) research. The first theme is that people with chronic disease and illness require special attention and un- derstanding at a level that is not required by other patients, which means that nurses must first respect the patients’ human dignity and worth. Respect includes acquiring a greater understanding of the experiences of patients who live with long-lasting disease and illness. The second predominant theme is the need for a clear and comprehensive health-promot- ing definition of chronic illness, ultimately to avoid labeling and stereotyping. Nurses need to plan quality interventions to address these themes. Providing care requires that nurses exhibit ideal ethical competencies; people with chronic disease and illness re- relationship with patients who chronic disease and liness. One cacy involves overseeing medical. but a larger advocacy role requir support with genile nudging or a sense of security. To serve as nurses will take certain risks, such out for their patients, possibly bei the middle of a conflict between the others, and realizing the possibili could be in the nurse-patient relati Another ethical competency importance for advocacy is com including two associated competen fulness and effective listening. Pracu communication facilitates advoca occurs at the point of care and the the patient and family and on broade national levels. At the broader rang cacy, nurses can serve on ethics c and in political action groups and pr organizations. They can also address writing for publication and engagin dia events to speak on behalf of pati chronic disease and illness. One suc example is publicly supporting mea improve access to healthcare services vidualized care instead of the Band-Al care that many patients experience. serving in the role of advocate at any care can be emotionally and physican quire the same level of nursing competency or more. The competencies include the following: (1) moral integrity-honesty, truthfulness and truthtelling, benevolence, wisdom, and moral courage; (2) communication–mindfulness and effective listening; and (3) concern-advocacy, power, and culturally sensitive care. Although all these ethical competencies are important, advocacy seems especially im- portant for building a trustworthy, therapeutic ETHICAL REFLECTION: A MIDDLE-AGED PATIENT WITH CRIPPLING RHEUMATOID ARTHRITIS A middle-aged female patient, Ms day Ms. S. piese
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