CHAPTER 29 1 Define common terms used in ethical discussions. 2 Identify three theories or approaches to ethical thinking. 3 Discuss the principle of autonomy and the concept of informed consent. 4 Discuss the principles of beneficence and nonmaleficence and the concept of paternalism. 5 Discuss the principle of justice and the concepts of microallocation and macroallocation. 6 Discuss proxy decision-makers for care of the newborn. 7 Explain the influences of spirituality and culture on ethical decision-making by parents and professionals. 8 Explain the female versus male and nursing versus medical perspectives brought to ethical discussions. 9 Distinguish among autonomy, substituted judgment, and best interests as a basis for ethical decisions. 10 Define the purpose and goals of palliative care and infants for whom this type of care may be chosen by parents. 11 Identify five clinical issues that commonly lead to ethical dilemmas for nurses. 12 Identify two professional issues that commonly lead to ethical dilemmas for nurses. 13 Outline key points of a teaching plan for patients and families regarding ethics and ethical dilemmas. 1. Morals: from the Latin word mores, which means “custom” or “habit”; the moral principles that guide nursing practice are respect, autonomy, beneficence, nonmaleficence, veracity, confidentiality, fidelity, justice, and privacy (American Nurses Association [ANA], 2001) 2. Morality: one’s belief about what is right or the best thing to do; general rules of conduct and standards for evaluating behavior; learned through socialization and association with groups such as family, religious, ethnic groups 3. Moral agent: one who has the power to act; one who is making a moral decision 4. Values: standards that are a person’s basic beliefs about the self and relationships to others 5. Value system: a learned, organized set of principles and beliefs concerning conduct and behavior that helps a person choose options, make decisions, and resolve conflicts 6. Ethics: from the Greek word ethos, meaning “custom” or “character”; established by Socrates, the discipline dealing with what is good or bad and with moral duty and obligation 7. Bioethics: a subdivision of ethics to determine the most morally desirable course of action in health care when there are conflicting values inherent in varying treatment options (American Hospital Association, 1985) 8. Ethical-moral dilemma: a difficult choice between two alternatives when there is a conflict of values, no clear consensus about what is right and wrong, and all options are morally justifiable and equally defendable 9. Law: set of rules for social behavior; enforced by the police, courts, and prisons 10. Quality of life: total well-being, including both physical and psychosocial determinants (Hack, 1999) so that the individual can lead his or her life and function as part of the human family, individually and collectively (Kirschbaum, 1996; Swaney, English, & Carter, 2006); to ensure that quality of life decisions not be reduced to arbitrary judgments based on personal preference or the perceived social worth of the patient, justified criteria of benefits and burdens must be considered (Beauchamp & Childress, 2008) B Ethical approaches and theories 1. Non-normative ethics: an approach to ethics that denies that universal principles exist to guide behavior a. Descriptive ethics: represents the work of sociologists, anthropologists, psychologists, historians, and others who describe or attempt to explain moral behaviors (Beauchamp & Childress, 2008) b. Metaethics: from the Greek word meta, meaning “behind, beyond, higher”; the division of ethics wherein professional ethicists or philosophers attempt to analyze reasons behind the principles 2. Principle-based ethics: an approach to ethics that identifies and defines fundamental principles to guide behavior and decision-making a. Duty and obligation–based approach: deontology (1) From Greek word deonteis, meaning “duty” (2) Devises norms or rules from duties human beings owe one another because of commitments made (3) Duty to follow universally accepted rules of what is right and wrong (4) Looks at motives behind an action. (5) Related principles (and the moral principles guiding nursing practice) (ANA, 2001) [i] From Greek words auto, meaning “self,” and nomos, meaning “law” [ii] Respect for the unconditional worth of people; for their thoughts and actions; and for their free choice and personal decisions (Joffe, Manocchia, Weeks, & Cleary, 2003) [iii] The right of people to be left alone and to define their own destiny without interference; self-determination [iv] In health care, based on the doctrine of informed consent, making deliberate choices about an option (Beauchamp & Childress, 2008) [i] From the Hippocratic oath; a duty to help others; to balance good and harm; to prevent harm, to remove harm, and to not inflict harm [ii] An obligation to accomplish good in service to others through acts such as mercy, kindness, and generosity [iii] In health care, providing information on the benefits as well as risks of an intervention (Beauchamp & Childress, 2008) [i] From the Hippocratic oath; an obligation to “first, do no harm” to others; the duty to avoid intending, causing, permitting, or imposing harm or the risk of harm to another person [ii] Harm must be ultimately justified to achieve some greater good or to prevent a greater harm [i] Rule derived from Aristotle; the obligation to treat individuals equally or comparably; to distribute benefits and burdens equally throughout society [ii] Must guard against arbitrary, inconsistent decision-making [iii] Macroallocation: distribution at a societal level; example: which program is funded? [iv] Microallocation: distribution at a personal level; example: who receives the transplant? (e) Veracity: obligation to tell the truth and to give full, complete, and truthful information to patient and parents for decision-making (f) Fidelity: obligation to keep promises or commitments; to remain loyal (g) Privacy: right of an individual or group to decide when and to what extent information about themselves can be revealed to others; freedom from intrusion (h) Confidentiality: an extension of privacy; right to limit the access of others to private information revealed by a patient to his or her provider b. Goal outcome consequences–based approach: teleology, utilitarianism, or consequentialism (1) The rightness or wrongness of an act depends on its utility or usefulness. (2) Rights consist of actions that have good consequences, and wrong consists of actions that have bad consequences; acts are judged according to their value. (3) Achieving the greatest good or happiness for the greatest number of people by balancing the good that is possible with the harm that might result from performing or not performing an action; the end justifies the means. (4) Related principles (Lagana & Duderstadt, 1995) (a) Allocation of resources versus cost-effectiveness; relates to the distribution of scarce resources (b) Quality of life versus sanctity of life; addresses the question of a good life compared with life at all costs. (c) Paternalism versus autonomy; addresses the question of who knows best and who should make the decision for an individual. (d) Withholding of care versus starting care; relates to the delivery of care to individuals and society; questions when care should be initiated, withheld, or withdrawn. c. Virtue character–based approach (1) Traced to Aristotle; decisions about actions are based on what a virtuous person would do (2) Ethics is not about following rules, but about character and virtues (e.g., respect, fidelity, honesty, benevolence); rules and principles come later. d. Case-based approach (casuistry) (1) The claims or grounds of a particular case are compared with similar cases. (2) Casuistry is about how a general moral principle should be understood in a similar set of circumstances. e. Story-based approach (narrative) (1) The narrative story is a method of ethical reasoning. (2) Specific narratives for each case, such as the person or people involved, the subjective experience, the illness and caring, are the focus of consideration. f. Care-based approach (feminist) (1) Related to virtue theory; not based on fixed rules, principles, or theories, but on regard for the person; in health care is relationship-based and stresses the context of a situation: a person has a life before and after the illness, and caregivers should ensure continuity and connectedness to that life (2) Nurses have looked at this model carefully as a basis for their practice because it stresses holism, connectedness, hearing the patient’s story, and the ethics of care (Anderson, 2007) g. Social ethics (Swaney et al, 2006) (1) Concern for the individual and for the common good of all; moral judgments affect the larger social community of which the individual and institutions are a part; example: society may bear the financial, physical, educational, and social costs of severely disabled infants. (2) How individual moral behavior and the range of moral responsibility and accountability are influenced by social context, social structures, and public policy issues h. Protection of human subjects in research (Swaney et al, 2006) (1) Introduction of interventions or treatments without appropriate research into safety, efficacy, and long-term outcomes (2) Professional responsibility to evaluate the quality of evidence regarding the use and benefit of both traditional and newer clinical practices; evidence-based practice (Orleans, Tappero, Glicken, & Merenstein, 2002) (3) Importance of empirical studies to contribute to the ethical aspects of clinical practice and the effect of ethical decision-making (McHaffie, Laing, Parker, & McMillan, 2001) C Related principles and concepts 1. Informed consent: based on principle of autonomy or the right to make decisions without coercion (Joffe et al, 2003) a. The fundamental right of a person to determine what happens to his or her own body; to decide what is harmful or beneficial in treatment and care; should be interfered with only to prevent harm to others b. Supported by considerable court decisions in the United States; stresses patient rights; to accomplish informed consent, the reasonable person standard may be applied: “What would the reasonable person want in this circumstance?” c. Requires that professionals have a positive attitude about autonomy d. Rests on an assumption of competence and capacity (a) A legal status; decided by the courts, usually based on age of majority; definition of adult (b) All adults are competent unless a court decides otherwise. (a) A clinical judgment; decided by caregivers based on patient’s ability to understand alternatives and consequences of treatment and no treatment, to weigh options, to think about life goals and values, to choose the best option for self, and to communicate the decision [i] Capacity may come and go, depending on such factors as time of day, effects of medication and anesthesia, environment, stress, and pain. [ii] Must use caution when determining capacity; should not manipulate or control patient’s capacity; should not judge quickly; should not assume anyone who disagrees does not have capacity; be careful about words used, time of day, condition of patient [iii] Consider ways to restore capacity so patient can make own decision (e.g., hold medications temporarily to restore capacity). [iv] Determine whether the decision can be delayed while patient regains capacity. e. The process of informed consent (1) Process is important; paper is often used as evidence that process occurred (2) The right to consent also includes the right to refuse. (3) Components of informed consent are defined by each state, but usually include: (a) A health care professional’s recommendation for treatment (b) Determination of competence and capacity (c) Truthful and honest disclosure of information such as medical condition, nature and purpose of procedure, consequences, risks, alternatives, and name and qualifications of person performing treatment (d) Patient understanding of information (e) Voluntary consent or refusal, with a lack of coercion (4) Responsibility for obtaining consent remains with the person performing procedure or care. (a) Blanket consent: signed on admission to a hospital (b) Battery consent: signed for a procedure such as surgery (c) Detailed consent: signed for such things as a research drug or treatment (a) Competent adult: age of majority; determined by state law (b) Incompetent adult: court-appointed guardian; person close to adult who knows wishes if no court-appointed guardian is available (c) Minors: parent or guardian (d) Emancipated minor: when no longer subject to parental control (e.g., after marriage) (e) Mature minor: age limits and scope determined by state law; usually applies to consent for situations such as pregnancy care, sexually transmitted disease care, and substance abuse treatment (7) Research consent requires detailed information and a lengthy, special process 2. Concept of paternalism-maternalism-parentalism a. A competent, capable adult being treated as if he or she were a child by a person or people acting as if they had the authority and concern of a parent (Cahill, 2001) (1) Paternalism or patriarchal health care system: fathering behaviors (Woodward, 1998) (2) Maternalism: mothering behaviors b. Person or people claim they are acting on behalf of the patient; they know what is best and good for the patient (Cahill, 2001). c. Is based on the assumption that a patient’s lack of technical or medical expertise justifies the provider in making the decision for the patient (Cahill, 2001) d. A way to induce, coerce, or direct others to do what one wants them to do (Cahill, 2001) e. May include a variety of behaviors such as nonverbal pretenses, withholding of relevant information, lying, and coercion, with the goal being that the patient complies with what the provider wants to do. f. Anyone can be parental: spouse, family, friends, clergy, provider, or administrator. a. Newborns are incompetent and unable to make their own decisions. b. Parents have primary authority (parental autonomy) to act as proxy or surrogate decision-makers for their infants. c. Legally, through court rulings, society has designated parents as primary decision-makers because they love the infant and are concerned for the infant’s well-being; they have the best interests of their infant in mind; they know the values of the family culture and environment in which the infant will be raised; and generally are interested in the welfare of their children. As a general matter of law, except in cases of abuse and neglect, courts have ruled that parents have the right to make medical decisions about their children (Annas, 1994; Purdy & Wadhwani, 2006; Rushton & Hogue, 1993). d. Some professional guidelines state that parental autonomy should not be absolute and that the decisions made by parents of premature infants should not be considered absolute (American Academy of Pediatrics [AAP], and American College of Obstetricians and Gynecologists [ACOG], 1995; ACOG, 1989) and that “physicians should not be forced to undertreat or overtreat an infant if, in their best medical knowledge, the treatment is not in compliance with the standard of care for that infant” (AAP, 1995); in protecting the rights of nonautonomous patients, guidelines to facilitate decision-making, establish a standard of care and support health care professionals in making the decision to remove life-sustaining support have been published (AAP, Committee on Bioethics, 1994). e. Double effect: principle that asserts that an action is considered good if the intent has positive value, even if secondary effects of the action might be considered harmful if undertaken as a primary goal (e.g., using narcotics for a dying newborn [the positive goal is relief of suffering, even at the expense of shortening life]) (Swaney et al, 2006). f. Problem of uncertainty (Swaney et al, 2006) (1) Medical uncertainty about the long-term prognosis or quality of life of a newborn infant complicates decision-making about what is in the best interests of the child and family (Stutts & Schloemann, 2002a; Zeigler, 2003) (2) Parental question: “Will my infant be OK when he [she] grows up?” Professional responses: A statistical approach gives probabilities about similar babies, but not about the parent’s individual infant; “I don’t know” response about their individual infant’s outcome may be the most honest answer. (3) How prognostic uncertainty is (or is not) communicated to parents before delivery will influence decision-making when the prognosis or quality of life becomes more certain over time. g. Treatment versus nontreatment (1) Treatment goals should be established by parents (parental autonomy) with input or participation from health care professionals so that both are working toward the same goals (Culver et al, 2000; Glassford, 2003; Harrison, 1993; McHaffie et al, 2001; Swaney et al, 2006). (2) For parents to be decision-makers, they must be fully informed to consent to or refuse treatment for their newborn infant or infants (Culver et al, 2000; Purdy & Wadhwani, 2006; Zeigler, 2003). (a) Professionals have an ethical and legal obligation (AAP, 1995; Clark, 1996; Doroshow et al, 2000; Tyson, 1995) to inform parents with facts about the neonate’s condition, illnesses, outcomes, risks, and benefits of various interventions or noninterventions so they are able to give informed consent or refusal (Culver et al, 2000; Siegel, Gardner, & Merenstein, 2002). (b) Professional attitudes or intuition that interfere with open, honest communication of information to parents include (Harrison, 1993; McHaffie et al, 2001): [i] Assuming that parents are too emotional to assimilate information or make a rational decision [ii] Assuming that information about poor outcomes or complications may disrupt parental attachment to the infant [iii] Assuming that parental guilt or psychological harm will result from decision-making and that the final decision is too much for the parents to bear [iv] Health care providers’ efforts to persuade parents: a difficult question between a respect for parental autonomy or an attempt to overcome it; professionals must be careful not to usurp parental authority (c) Use of an evidence-based table of the likely outcomes (e.g., mortality, ventilator or oxygen use, brain scan results, long-term neurodevelopmental outcomes) may be useful for parental decision-making (Koh, Casey, & Harrison, 2000; Koh, Harrison, & Morley, 1999). (d) In several studies, prenatal consultation with a neonatologist for the woman has been found to be useful (Neufeld, Woodrum, & Tarczy-Hornoch, 2000; Paul et al, 1999). (e) Research (McHaffie et al, 2001) has indicated that parents believe: [i] They can or should accept responsibility for making difficult decisions; the majority state that the ultimate decision should be theirs. [ii] They are able to understand medical issues or information and to assess consequences for their own child. [iii] They can make a decision and do so without guilt, doubt, or adverse consequences and believe that the right decision was made. (f) Decisions are often based on the infant’s medical condition and less by the parent’s wishes (Brinchmann, Forde, & Nortwedt, 2002; Partridge, Freeman, Weiss, & Martinez, 2001); parental choices can be limited by: (3) In addition to what kind of treatment is in the best interests of the infant, the appropriateness of any treatment must be considered. (a) A nontreatment decision is withholding or withdrawing of treatment. (b) A nontreatment decision should not be referred to as withholding or a withdrawing care. (c) Care, whether curative (with treatment) or palliative (with comfort care), is always provided. (d) Nonbeneficial: treatment considered not to benefit the patient may be withheld or withdrawn. [i] No ethical obligation exists to provide nonbeneficial treatment, but a standard definition of nonbeneficial is lacking. [ii] A medical effect may be obtained without a medical benefit as determined by family goals for the newborn or child; may include physiologic, psychologic, social, and religious reasons (Lantos et al, 1989).
Ethics
INTRODUCTION
Stay updated, free articles. Join our Telegram channel
Full access? Get Clinical Tree
