Two approaches have dominated Western thinking about medical ethics: consequentialism and deontology.1
A philosophical approach that judges the correctness of an action based on the effect it will likely have. The focus is on the consequences of an action. Advocates, including utilitarian philosophers, argue for actions that seek the greatest happiness for the greatest number of people.
A philosophical approach that argues that actions have intrinsic moral worth. Supporters purport that certain universal truths and rules should be followed, regardless of their consequence.
Most people feel that four principles should guide approaches to care and decision making:
Beneficence: Provide care that benefits the patient
Maleficence: Avoid causing harm
Autonomy: When possible, individuals should decide for themselves what is in their best interests
Justice: Relates to fairly distributing services and resources
The legally authorized decision maker is determined by the patient's age and the capacity for an individual to make a decision.
Adult patients: Patients >18 years old can make decisions for themselves if they have decision-making capacity. An adult can identify a decision maker in the event he or she does not have decision-making capacity. Surrogate decision makers should make decisions based on substituted judgment when possible.
Decision-making capacity: A clinical determination that an individual can 1) understand and communicate about the medical situation; 2) manipulate information about the situation and consider the consequences of alternatives; 3) make a choice among the alternatives
Competence: Typically considered a legal term reflecting the ability of an individual to make a decision
Power of attorney: A legal document giving decision-making authority for the patient to an individual
Legal surrogate: A person legally charged with acting on behalf of another person
Substituted judgment: A decision made on behalf of another person based on knowledge about what the person would decide if he or she could speak for himself or herself
Pediatric patients: For patients <18 years old, parents or the patient's legal guardian is the legal decision maker and should make decisions based on the best interest standard. However, the state can intervene when parents make decisions that place the child's health, well-being, or life in jeopardy. The American Academy of Pediatrics supports involving developmentally appropriate patients in clinical decision making, provided that his or her views will be considered.2
Best interest standard: The decision pursued should be the one most favorable for the child.3
Exceptions: In certain state-determined clinical situations (e.g., issues related to sexually transmitted infections or pregnancy), the patient can make his or her own decisions. States also have unique laws that determine who is eligible to be an emancipated or mature minor and therefore make his or her own medical decisions.
Patient assent: Patient approval or agreement about decisions.
Although the patient or his or her family member may be the legal decision maker, experts advocate using a process of shared decision making, particularly for value-laden decisions. Shared decision making seeks to arrive at appropriate choices for patients and families through consideration of available options and the patient's and family's values. In shared decision making, communication exchange is bidirectional and comprehensive. Clinicians share medical information with families, and families share their values, attitudes, and preferences with the health care team. With shared decision making, patients and the family determine their role in decisions; that is, some people may choose to make decisions without guidance from clinicians, whereas others may request the clinicians make the final choice based on knowledge of the patient's and family's values and goals.4
DO NOT ATTEMPT RESUSCITATION (DNAR) AND FUTILITY
DO NOT ATTEMPT RESUSCITATION (DNAR)
There is a presumed desire for resuscitation, including cardiopulmonary resuscitation.5 Absent an order not to attempt resuscitation, it should be attempted in all patients. Competent adults and their surrogates (e.g., parents of pediatric patients) may refuse medical care, including resuscitation.
Bilateral DNAR: The medical team and patient and family both agree that treatment limitation is appropriate.
Unilateral DNAR: An order placed based on the direction of the medical team. Only some states have laws supporting this controversial approach.
Futility is sometimes used as a justification not to offer potential treatments felt not to be in the patient's interests.6 There are variable ways to define futility:
Futility by condition: Treatment for a particular diagnosis is felt to never be successful
Qualitative futility: Treatment preserves a patient in a state that by some would be considered unalterable; dependence on intensive medical care will never cease
Quantitative futility: In the last “X” years, treatment for a given condition has been unsuccessful
Physiologic futility: Proposed treatment is not able to meet intended physiologic goals
Because of the many definitions of futility and the need to consider every intervention in terms of the goals of the patient and family, there is movement away from using the concept of futility to support decisions about the use of potentially inappropriate care.7
WITHDRAWAL OF OR WITHHOLDING LIFE-SUSTAINING THERAPIES AND END-OF-LIFE CARE
Although the goal of most medical therapy is to preserve life, there are circumstances in which the burdens of care outweigh the potential benefits. In those cases, withdrawal or withholding of life-sustaining therapies may be warranted. There is strong ethical and legal consensus that both withdrawal and withholding of life-sustaining therapies may be acceptable options.8 In all end-of-life care situations, clinicians should give attention to the ethics of pain and symptom management.
Life-sustaining therapies refer to interventions that may prolong the life of a patient.
Examples of life-sustaining therapies: Include mechanical interventions like ventilators or kidney dialysis, surgical interventions like transplantation, or medical interventions like administration of chemotherapy or antibiotics.9
DOCTRINE OF DOUBLE EFFECT
This doctrine argues that it is ethically acceptable to do something that may have a bad side effect if the goal is to do something morally good. For example, it is ethically acceptable to give medication to ensure patient comfort at the end of life even if there is a risk that giving such medication might hasten death. Five conditions are required: 1) the action intended is morally good; 2) the good effect is intended; 3) the bad effect is not guaranteed; 4) the good effect is not achieved as a result of the bad effect; and 5) achieving the good effect outweighs the bad effect.
USE OF NEUROMUSCULAR BLOCKADE IN END-OF-LIFE CARE
Most experts discourage the use of neuromuscular blockade during end-of-life care, including during withdrawal of mechanical ventilation. Arguments against using neuromuscular blockage in these situations include the following: 1) it masks signs of air hunger and thus limits the clinician's ability to provide adequate sedation; 2) it does not allow for the possibility that the patient might survive after withdrawal of life-sustaining therapies; and 3) it does not allow meaningful interactions between the patient and family at the end of life.
WITHHOLDING OF FLUIDS AND NUTRITION
Although the provision of fluids and nutrition holds significant emotional, cultural, and sometimes religious significance, many argue that it is ethically justifiable, in certain circumstances, to withhold fluids and nutrition. As with all decisions, families and staff need to have full understanding of the indications and rationale for withholding fluids and nutrition and of the likely outcome of taking such an approach.
ETHICS OF DEFINING DEATH AND ORGAN DONATION
Death is defined by the Uniform Determination of Death Act. An individual must meet certain criteria for either brain death or circulatory death to be considered dead.10 There are ethical challenges to defining death either by neurologic or circulatory criteria; however, no changes to the legal definition of death or organ donation by these criteria have been made.
Death by neurologic criteria: Irreversible cessation of all functions of the brain, including the brainstem (see chapter 47 for how to determine brain death)
Death by circulatory criteria: Cessation of circulatory and respiratory functions
The dead donor rule requires providers caring for a patient to ensure that the patient meets criteria for death prior to organ procurement.10
Heart-beating brain-dead donors: Individuals who donate organs based on death by neurologic criteria.
Non–heart-beating donors: Individuals who donate organs based on death by circulatory criteria. Organ donation in this setting is called donation after circulatory determination of death (DCDD) or donation after circulatory/cardiac death (DCD).
ORGAN PROCUREMENT AGENCIES
Organ Procurement Organizations (OPOs): Federally designated regional agencies for organ procurement throughout the United States
Organ Procurement and Transplantation Network (OPTN): A network of all organ procurement agencies to match organs to recipients
United Network for Organ Sharing (UNOS): A private organization that contracts with the government to manage the OPTN
Moral distress arises when the provider has a strong personal sense of what the morally “correct” action is but is asked or required to act otherwise.11 It often comes up in situations where there are disagreements over the direction of care for a patient. Moral distress can be encountered by any member of the health care team and can build over time, leading to residual distress after a situation is resolved.
Conscientious objection refers to refraining from providing actions that the provider morally opposes.12 Individual states may either have laws that permit refusal based on ethical, moral, or religious grounds or that require health care workers to provide services to which they might have ethical, moral, or religious objections.
RESEARCH VERSUS PRACTICE OR INNOVATION
There are differences between clinical practice, research, and innovation.13
Practice: Interventions designed to enhance well-being of individual patient(s); provide diagnosis or treatments to specific individuals.
Research: Activities designed to contribute to generalizable knowledge.
Innovative procedures: Novel procedures not always introduced as research; depends on what their purpose is and how they are judged by the medical community.
ETHICAL RESEARCH AND INFORMED CONSENT
The Belmont Report outlines principles for ethical research. Similar to principles for clinical ethics, the principles described in the Belmont report include respect for persons (treating individuals with autonomy), beneficence and justice. Informed consent is an important component of ethical research. Informed consent generally requires three elements: information disclosure, comprehension, and voluntariness.13
Information Disclosure: Potential participants should understand research procedures, risks/benefits, and alternative procedures (when available) and have the opportunity to ask questions. Everyone should be informed that they can withdraw participation at any time.
Comprehension: Information must be adapted to meet the capacity of the individual from whom consent is sought. For those without capacity (e.g., infants, cognitively impaired individuals, comatose patients), third-party permission is sought. Individuals should be given the opportunity to choose to the extent able.
Voluntariness: Consent should be given free of coercion or undue influence.
Equipoise refers to true uncertainty about the superiority of either arm in a trial. Equipoise is lost when it becomes clear that one treatment/arm is superior to another.14
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