8
ETHICAL AND LEGAL CONSIDERATIONS

Sarah Delgado

 


KNOWLEDGE COMPETENCIES

       1. Characterize the nurse’s role in recognizing and addressing ethical concerns.

       2. Identify ethical principles and describe their application in the healthcare setting.

       3. Describe the steps involved in analyzing an ethical problem.


 

As new ethical issues in progressive care continue to emerge, practitioners must develop skills in ethical decision making. An ethical dilemma occurs when two (or more) ethically acceptable but mutually exclusive courses of action are present. The dilemma is further complicated as either choice can be supported by an ethical principle, yet there are consequences for either choice. Moral distress, another common ethical problem, occurs when a provider believes he knows the ethically acceptable action to take but feels unable to do so. Competence in moral decision making evolves throughout one’s professional career. However, there are general moral principles and guidelines that direct ethical reasoning and provide a standard to which professional nurses are held. Beginning clinicians, as well as more experienced nurses, should be familiar with the moral expectations and ethical accountability embedded in the nursing profession. This chapter introduces the elements that serve as a foundation for addressing ethical problems, including professional codes and standards, institutional policies, and ethical principles. Advance directives, end-of-life issues, and ethical environment are also discussed.

THE FOUNDATION FOR ETHICAL DECISION MAKING

Professional Codes and Standards

The purpose of professional codes is to identify the moral requirements of a profession and the relationships in which they engage. The Code for Nurses developed by the American Nurses Association (ANA) articulates the essential values, principles, and obligations that guide nursing actions. The nine provisions of the ANA Code of Ethics for Nurses identify the ethical obligations of nurses and are applicable across all nursing roles (American Nurses Association, Code of Ethics for Nurses with Interpretive Statements, 2001. http://www.nursingworld.org/MainMenuCategories/EthicsStandards/CodeofEthicsforNurses). While these provisions do not address specific ethical problems, they do provide a framework for examining issues and understanding the nurse’s role in resolving them.

In addition to the ANA Code, nurses function in accordance with particular standards of practice. Standards of nursing practice are delineated by professional organizations and statutory bodies that govern the practice of nursing in various jurisdictions. Derived from nursing’s contract with society, professional nursing standards define the criteria for the assessment and evaluation of nursing practice. External bodies, such as state boards of nursing, impose certain regulations for licensure, regulate the practice of nursing, and evaluate and monitor the actions of professional nurses. Many organizations also delineate standards of practice for registered nurses practicing in a defined area of specialty; for example, the American Association of Critical-Care Nurses (AACN) has established standards and expectations of performance for nurses practicing in critical care.

Standards of practice outlined by statutory bodies and specialty organizations are not confined to clinical skills and knowledge. Nurses are expected to function within the profession’s code of ethics and are held morally and legally accountable for unethical practice. When allegations of unsafe, illegal, or unethical practice arise, the regulatory body serves to protect the public by investigating and disciplining the culpable professional. Although specialty organizations do not have authority to retract professional licensure, issues of professional misconduct are reviewed and may result in revocation of certification and notification of external parties.

Position Statements and Guidelines

In an effort to address specific issues in clinical practice, many professional organizations develop position statements or guidelines. The purpose of position statements is to apply the values, principles, and rules described in the ANA Code of Ethics for Nurses to particular contemporary ethical issues. Familiarity with the AACN and ANA position statements helps the progressive care nurse to clarify and articulate a position consistent with the professional values of nursing.

To illustrate the application of position statements, consider a situation in which a progressive care nurse is asked to intentionally hasten a patient’s death. The Code for Nurses and ANA position statement on assisted suicide and active euthanasia clarify the nurse’s role when such requests are made. In addition, the ANA position statement on pain management and control of distressing symptoms in dying patients provides guidance for addressing the physical and emotional needs of patients at the end of life. In this case, the nurse and physician should explore the patient’s request for an accelerated death and explain the legal and moral boundaries of his request. The option to withdraw treatment and provide aggressive palliative care should be offered and examined with the patient. The Essential Content Case “Working Together” provides a further example of the application of professional organization’s position statements to clinical practice.

Institutional Policies

Because nurses practice within organizations, institutional policies and procedures also guide their practice. Institutional guidelines for assessing decision-making capacity, caring for un-represented patients who lack capacity, or policies for the determination of brain death are intended to guide employees of an organization when they are faced with ethical uncertainty. These policies usually reflect ethical expectations congruent with the professional codes of ethics. However, in some circumstances, organizations may assume a particular position or value and therefore expect the employees to uphold this position; for example, some hospitals endorse particular religious positions and may prohibit professional practices that violate these positions. Ideally, the nurse and institution have complementary values and beliefs about professional responsibilities and obligations. Institutions often provide internal resources to help clinicians resolve difficult ethical issues. Institutional ethics committees provide consultation on ethical situations and institutional policies outline the procedures of case review, which should be available to all employees. In the case example “Who Decides?” the nurse should consider what resources, such as the ethics committee, another physician, or the nurse manager, might assist her in advocating for this patient, and clarifying the goals of care. While the ANA Code states that nurses are obligated to advocate for patients, finding support is an essential step in that process.

 


       ESSENTIAL CONTENT CASE
Working Together


 

 


       ESSENTIAL CONTENT CASE
Who Decides?


 

Legal Standards

Public policies and state and federal laws also influence the practice of healthcare professionals. Policies from agencies such as the Centers for Disease Control and Prevention (CDC) or the Department of Health and Human Services (DHHS) generate changes in practice and in the actions of health professionals. In addition, the Centers for Medicare and Medicaid Services (CMS), a major payor for healthcare, sets standards for hospitals and providers that must be abided to ensure reimbursement for services. State legislation can also influence nursing practice; for instance, some states have laws that support hospitals and providers in refusing to provide futile medical care.

The Affordable Care Act (ACA) passed in 2010 includes tracking quality indicators such as the rate of hospital readmission (CMS) and tying these indicators to Medicare reimbursement for services. The ACA thus creates financial incentives for hospitals to ensure that patients are adequately supported at the time of discharge to decrease the likelihood that the patient returns to the hospital in the first 30 days. In this way, the ACA offers a legal manifestation of the ethical principle of non-maleficence, discussed below. The Health Information Portability and Accountability Act (HIPAA) Privacy Rule similarly creates a legal mandate to honor the ethical obligation of confidentiality (DHHS).

When faced with an ethical problem, professional guidelines, institutional policies, or legal standards can assist, and sometimes resolve, the issue. Thus, it is imperative that nurses be familiar with these resources and how to access them. However, nurses also need to recognize that guidelines and policies and even the law do not always answer the question of what action should be taken. In such situations, the nurse must be prepared to identify the ethical principles involved and follow a step wise approach to addressing the problem.

Principles of Ethics

One of the most influential perspectives in biomedical ethics is that of principle-based ethics. This framework arose in the 1970s through the work of Beauchamp and Childress and continues to be a dominant method of thinking today. Inherent in this viewpoint is the belief that some basic moral principles define the essence of ethical obligations in human society. Four basic principles, and derivative imperatives or rules, are considered prima facie or binding. In other words, to breach a principle is wrong unless there are prevailing and compelling reasons that outweigh the necessary infringement. The principles and rules are binding, but not absolute.

Because many approaches to ethics integrate the rules and principles outlined by the principle-oriented approach, understanding the fundamental concepts of principle-based ethics is helpful to the progressive care nurse. The primary principles used are nonmaleficence, beneficence, justice, and respect for persons (or autonomy). The derivative principles or rules include privacy, confidentiality, veracity, and fidelity. The principles are not ordered in a particular hierarchy, but their application and interpretation are based on the specific features of the dilemma and the values of the team members involved. Articulating the principles involved and recognizing the personal values of the providers and family members are essential steps to resolving an ethical problem.

Nonmaleficence

The principle of nonmaleficence imposes the duty to do no harm. This injunction suggests that the nurse should not knowingly inflict harm and is responsible if negligent actions result in detrimental consequences. In general, progressive care nurses preserve the principle of nonmaleficence by maintaining competence and practicing within accepted standards of care.

When the patient’s safety or well-being is threatened by the actions of others, the nurse is obligated to remove and prevent harm. Knowledge of unsafe, illegal, or unethical practice by any healthcare provider obligates the nurse both morally and legally to intervene. The nurse must remove the immediate danger and communicate the infringement to the appropriate sources to prevent further harm. The nurse should turn to institutional policies and state nurse practice acts for guidance on the appropriate process of reporting.

Beneficence

The ethical principle of beneficence affirms an obligation to prevent harm, remove harm, and promote good by actively helping others to advance and realize their interests. Intrinsic to this principle is action. The nurse moves beyond the concept of not inflicting harm (nonmaleficence) by actively promoting the best interests of the patient and family.

To optimize the patient’s well-being and prevent harm, nurses must practice with the essential knowledge and skills required of the clinical setting. Nurses are expected to practice according to established standards of practice, to continue professional learning to improve clinical practice, and to refrain from providing care measures in which they are not proficient.

Beyond the provision of safe nursing care, the promotion of the patient’s well-being requires that the patient’s perspective be known and valued. Therefore, the nurse must gain an understanding of the patient’s underlying value structure to ensure that the care provided is consistent with the patient’s wishes. The duty to do good requires that the healthcare team understand the patient’s interpretation of what is “good.”

The obligations to do no harm (nonmaleficence) and to promote good or remove harm (beneficence) extend beyond provider incompetence and safe care. In ethically challenging situations, the potential harms associated with each of the available treatment options should be considered before deciding the best action. This can be difficult because sometimes an identified harm is death and in some of these cases death is not the worst harm. Careful and thorough thinking with regard to harms and benefits to a patient can often clarify not only which actions might be “right” for a patient, but also which actions might be “wrong.”

Respect for Persons (Autonomy)

The principle of respect for persons or autonomy affirms the freedom and right of an individual to make decisions and choose actions based on that individual’s personal values and beliefs. In other words, an autonomous choice is an informed decision made without coercion that reflects the individual’s underlying interests and values.

To respect a person’s autonomy is to recognize that patients may hold certain views and take particular actions that are incongruent with the values of the healthcare providers. Often this concept is difficult for healthcare providers to accept and endorse, particularly when the patient’s choice conflicts with the caregivers’ view of what is best in this situation. As an advocate, the nurse appreciates this diversity and continues to provide care as long as the patient’s choice is an informed decision and does not infringe on the autonomous actions of others.

Patients in the progressive care setting frequently have varying degrees of autonomy. The capacity of ill patients to participate in the decision-making process often is compromised and constrained by internal factors such as the effects of pharmacologic agents, the emotional elements associated with a sudden acute illness, and the physiologic factors related to the underlying illness. External factors, such as the hospital environment, also influence the patient’s potential to make autonomous choices. As demonstrated in the case example “Who Decides,” providers may differ in their assessment of patient capacity. Often, institutions have policies outlining a process for determining a patient’s capacity. In the case of “Who Decides,” the nurses involved in the patient’s care may find these policies helpful in guiding their thinking as well as their action. The progressive care nurse advocates for the patient by limiting, as much as possible, the factors that constrain the patient’s freedom to make autonomous choices. In this way the nurse supports the principle of respect for personal autonomy and upholds the ethical duty of beneficence.

Justice

The principle of justice is defined as fairness and in healthcare, is often applied to the manner in which goods, burdens, and services are distributed among a population. When resources are limited, justice demands that they be fairly allocated. There are three interpretations of the justice principle that will be described here by the following example. Imagine a population of people who have a set of goods that must be shared fairly among them. Egalitarian justice would demand that the goods be divided into equal portions and every member of the population given the same share. Humanitarian justice would demand that the goods be divided according to the needs of each member, with the neediest members getting larger portions. Libertarian justice would demand the goods be distributed according to the contributions made by each member of the population; those making the greatest contributions get the greater share.

Organ transplant offers a clear example of the justice principle in healthcare. Organs are a scarce resource and some of those listed for transplant will not survive the wait. Priority for transplant can be based strictly on time spent waiting (an egalitarian approach), or on illness severity (a humanitarian approach) or based on an assessment of an individual’s contributions and potential contributions to society (libertarian approach).

On a day-to-day basis, nurses make decisions involving the allocation of nursing care—which patient to assess first or how to assign patients on the unit to the staff on the next shift. The complex and competing demands for nursing resources can lead to chaotic and random decisions. The principle of justice argues for a comprehensive, thoughtful approach to address competing claims to resources.

Privacy and Confidentiality

Privacy and confidentiality are associated, but distinct, concepts that are derived from the principles of respect for autonomy, beneficence, and nonmaleficence. Privacy refers to the right of an individual to be free from unjustified or unnecessary access by others.

In the progressive care setting the patient’s privacy often is disregarded. The design of many units includes easy visualization of patients from the nurses’ station, and open access to the patient is presumed by most caregivers. This suggests a breach of individual privacy. Practitioners should be particularly attentive to requesting permission from the patient for any bodily intrusion or physical exposure. The casual infringement of an individual’s privacy erodes the foundation for establishing a trusting and caring practitioner-patient relationship.

Confidentiality refers to the protection of information. When the patient shares information with the nurse or a member of the healthcare team, the information should be treated as confidential and discussed only with those directly involved in the patient’s care. Exceptions to confidentiality include quality improvement activities, mandatory disclosures to public health agencies, reporting abuse, or required disclosure in a judicial setting. Most other disclosures of information obtained in a confidential manner should be shared with appropriate persons only when strong and compelling reasons to do so exist. The patient should be informed of the impending disclosure, and ideally the patient should authorize the disclosure.

Violations of patient confidentiality occur in many subtle ways. The use of electronic medical records and the transmission of patient information via facsimile are common practices in many institutions. Persons unrelated to the patient’s medical care who have access to the computers or facsimile may view confidential information without the individual’s permission. Other ways in which confidentiality is unprotected include casual conversations in hallways or elevators in which patient information is shared within earshot of strangers, the unauthorized release of patient information to friends or the media, and healthcare professionals within the institution taking the liberty to view a coworker’s medical record.

Nurses may feel conflicted when a patient discloses confidential information. The profession of nursing strongly values the principle of respect for persons and highly regards the concept of protecting confidential information. Therefore, decisions to break a patient’s confidentiality must be well considered and require balancing competing obligations and claims; for example, a nurse may consider breaking a patient’s confidentiality if there is a clear indication that, without doing so, harm may come to another individual. Clearly, this decision should not be made in isolation, and the nurse should seek advice when confronted with this difficult situation.

Fidelity

Fidelity is the obligation to be faithful to commitments and promises, and uphold the implicit and explicit commitments to patients, colleagues, and employers. The nurse portrays this concept by maintaining a faithful relationship with the patient, communicating honestly, and meeting the obligations to oneself, the profession of nursing, other healthcare professionals, and the employer.

The concept of fidelity is particularly important when caring for very sick patients. The vulnerability of these patients increases their dependency on the relationship with the nurse, thus making the nurse’s faithfulness to that relationship essential. Nurses demonstrate this faithfulness by fulfilling the commitments of the relationship, which include the provision of competent care and advocacy on the patient’s behalf. In addition, the nurse is obligated to demonstrate fidelity in relationships with colleagues and employers. In this way, the principle of fidelity can be difficult to uphold as institutions may have policies, such as those related to resource utilization, that the nurse finds are in conflict with the patient’s best interests. When confronted with such situations, the nurse is wise to carefully weigh the ethical principles involved, to seek guidance if necessary, and to consider a role as a moral agent of change if appropriate.

Veracity

The rule of veracity simply means that one should tell the truth and not lie or deceive others. Derived from the principle of respect for persons and the concept of fidelity, veracity is fundamental to relationships and society. The nurse-patient relationship is based on truthful communication and the expectation that each party will adhere to the rules of veracity. Deception, misrepresentation, or inadequate disclosure of information undermines and erodes the patient’s trust in healthcare providers.

Patients expect that information about their condition will be relayed in an open, honest, and sensitive manner. Without truthful communication, patients are unable to assess the options available and make fully informed decisions. However, the complex nature of acute illness does not always manifest as a single truth with clear boundaries. Uncertainty about the course of the illness, the appropriate treatment, or the plan of care is common in progressive care and a single “truth” may not exist. As emphasized in a model of patient-centered care, patients or surrogate decision makers must be kept informed of the plan of care and areas of uncertainty should be openly acknowledged. Disclosure of uncertainty enables the patient or surrogate to realistically examine the proposed plan of care and reduces the likelihood that the healthcare team will proceed in a paternalistic manner.

The Ethics of Care

The ethic of care is viewed as an alternative to the principled approach in bioethics. Rather than distinguish the ethical dilemma as a conflict of principles, the ethic of care involves the analysis of important relationships in a case, and emphasizes that the correct ethical action is one that preserves the key relationships (patient-spouse or patient-child). Carol Gilligan (1984) first described the ethic of care after observing how children make ethical decisions. Some adhere to rules (“do not steal” or “do not lie”), others consider how an action will affect others involved (hurt feelings, loss of trust). These ways of thinking carry through to adulthood. Most adults can view a situation through both the rules lens and the relationship lens.

The ethic of care begins from an attached, involved, and interdependent position. From this standpoint, morality is viewed as caring about others, developing relationships, and maintaining connections. Moral problems result from disturbances in interpersonal relationships and disruptions in the perceived responsibilities within relationships. The resolution of moral issues emerges as the involved parties examine the contextual features and embrace the relevance of the relationship and the related responsibilities.

In contrast, a principle-oriented or justice approach typically originates from a position of detachment and individuality. This approach recognizes the concepts of fairness, rights, and equality as the core of morality. Therefore, dilemmas arise when these elements are compromised. From this perspective, the approach to moral resolution is a reliance on formal logic, deductive reasoning, and a hierarchy of principles.

For nursing, the ethic of care provides a useful approach to moral analysis. Traditionally, nursing is a profession that necessitates attachment, caring, attention to context, and the development of relationships. To maintain this position, nurses develop proficiency in nurturing and sustaining relationships with patients and within families. The importance of relationships is also suggested in the first provision of the ANA Code of Ethics for Nurses. The ethic of care legitimizes and values the emotional, intuitive, and informal interpretation of moral issues. This perspective expands the sphere of inquiry and promotes the understanding and resolution of moral issues.

In addition to the care-based and principle-based approaches, there are other frameworks for examining ethical problems. Examples include the casuistry approach, which applies outcomes of past cases to the current situation, the narrative approach which examines the contextual features of the ethical problem, and the feminist approach which emphasizes addressing power imbalances. A full description of these approaches is beyond the scope of this chapter; however, an awareness of the variety of approaches to ethical problems is essential to collaborative decision making. The nurse, as member of the healthcare team, recognizes that other team members and patients and families may adopt different approaches when faced with the same ethical problem. Active listening and open-ended questions enable the nurse to recognize the approach adopted by another provider or family member, and this recognition improves communication and resolution of the ethical problem.

Paternalism

In ethics, paternalism refers to instances in which the principle of beneficence overrides that of autonomy. In such cases healthcare providers select and implement interventions that they believe will lead to the best outcomes without (or even against) consent from the patient. Sometimes, these actions are appropriate. An example of paternalism in progressive care is requiring mentally-competent patients to call for assistance before getting out of bed to use the bathroom. Fall prevention overrides the patient’s autonomy but is justified by the benefit of ensuring patient safety. Most times, however, paternalism is not justified. It is generally not acceptable to override an autonomous patient’s decisions without their consent. The case manager in the Essential Content case above was exercising paternalism in suggesting that the patient’s daughter be contacted despite the patient’s clear statement that she did not desire this course of action.

Progressive care nurses may find the balance between the patient’s beliefs and the duty to promote good difficult and confusing. In the acute care setting it is often unclear what actions or course of treatment will most benefit the patient physiologically and which plan best reflects the patient’s values. This uncertainty may result in fragmented discussions with the patient or surrogate and a treatment plan that reflects the values of the healthcare team rather than the patient. The nurse’s moral obligation is to continue to promote the patient’s interests by pursuing an accurate representation of the patient’s beliefs and values, and to raise concerns of conflicting interpretations to appropriate members of the healthcare team.

 


       ESSENTIAL CONTENT CASE
Examples of Different Ethical Frameworks and How They Affect Conclusions


 

Patient Advocacy

Patient advocacy is an essential role of the nurse, as emphasized in the ANA Code of Ethics. Although there are many models for defining and interpreting the relationship between the nurse and patient and no model can thoroughly describe its complexity and uniqueness, the patient advocacy role offers an essential description of the moral nature of this relationship. In addition, the third provision of the ANA Code of Ethics, “The nurse promotes, advocates for, and strives to protect the health, safety, and rights of the patient,” specifically identifies the nurse’s role as a patient advocate.

The term advocacy refers to the use of one’s own skills and knowledge to promote the interests of another. Nurses, through their education and experience, are able to interpret healthcare information and understand the impact of disease and medical interventions in a unique way. A nurse acts as a patient advocate by applying this unique understanding to ensure that the patient’s beliefs and values guide the plan of care. The nurse does not impose personal values or preferences when acting as an advocate, but instead guides the patient or surrogate decision maker through values clarification, identification of the patient’s best interests, and the process of communicating decisions. Thus, the patient or surrogate is empowered by the nurse to direct the healthcare plan.

Assuming the role of patient advocate is not without risk. Nurses may find that obligations to oneself, the patient, the patient’s family, other members of the healthcare team, or the institution are in conflict and have competing claims on nursing resources. These situations are intensely troubling to nurses and the support of colleagues is essential to resolving these dilemmas. In circumstances of conflict, nurses should clarify the nature and significance of the moral problem, engage in a systematic process of moral decision making, communicate concerns openly, and seek mutually acceptable resolutions. A framework within which to identify and compare options provides the necessary structure to begin the process of moral resolution.

THE PROCESS OF ETHICAL ANALYSIS

When faced with an ethical problem, the nurse is expected to implement a formal process that promotes resolution. A structured approach to ethical dilemmas provides consistency, eliminates the risks of overlooking relevant contextual features, and invites thoughtful reflection on moral problems. Even so, analysis of ethical dilemmas is not easy. It often requires the assistance of an ethics consult service, the members of which have specific training in handling ethical dilemmas. While there are a variety of ethical decision-making processes, the one described here mirrors the nursing process. The following steps are involved in case analysis:

Assessment

         •   Identify the problem. Is it an ethical dilemma? Is it moral distress? Clarify the competing ethical claims, the conflicting obligations, and the personal and professional values in contention. Acknowledge the emotional components and communication issues.

         •   Gather the data. Distinguish the morally relevant facts. Identify the medical, nursing, legal, social, and psychological facts. Clarify the patient’s and family’s religious and philosophical beliefs and values.

         •   Identify the individuals involved in the problem. Clarify who is involved in the problem’s development and who should be involved in the decision-making process. Identify who should make the final decision, and discern what factors may impede that individual’s ability to make the decision.

Plan

         •   Consider all possible courses of action and avoid restricting choices to the most obvious.

         •   Identify the risks and benefits likely to arise from each option.

         •   Analyze each course of action. In a principle-based approach, identify which principles support the alternative courses of action. In a care-based approach, consider the impact of each course of action on the existing relationships.

         •   Search for professional organizations’ position statements and institutional guidelines that address this issue.

         •   Seek input from the resources available to help with ethical problems. In many cases, this is an ethics consult service or an ethics committee. Any hospital that is accredited by the Joint Commission must have in place a mechanism for dealing with ethical issues.

Implementation

         •   Choose a plan and act.

         •   Anticipate objections.

Evaluation

         •   Outline the results of the plan. Identify what harm or good occurred as a result of the action.

         •   Identify the necessary changes in institutional policy, professional organizations’ position statements or other strategies to avoid similar conflicts in the future.

This stepwise process of ethical analysis incorporates ethical principles and rules, relevant medical and nursing facts, and specific contextual features, and reflects a model of shared decision making. This ideology is essential if current and future moral issues are to be addressed and negotiated.

CONTEMPORARY ETHICAL ISSUES

Informed Consent

As a patient advocate, the progressive care nurse recognizes the patient’s or surrogate’s central role in decision making. Patients must make informed decisions based on accurate and appropriate information. By uncovering the patients’ primary values and beliefs, the nurse empowers patients and surrogates to articulate their preferences. Therefore, the nurse does not speak for the patient, but instead maintains an environment in which the patient’s autonomy and right to self-determination are respected and preserved.

The doctrine of informed consent encompasses four elements: disclosure, comprehension, voluntariness, and competence. The first two of these elements are related because the patient’s comprehension often depends on how the information is disclosed. Information must be provided in a manner that promotes the patient’s understanding of the current medical status, the proposed interventions (including the nature of the therapy and its purpose, risks, and benefits), and the reasonable alternatives to the proposed treatment. Full disclosure in clear language is supported by the principle of veracity.

The overall goal of the treatment, rather than just the procedure, should be discussed with the patient and family and the goals should reflect the desirable and likely outcomes for this individual. The nurse can contribute significantly to the comprehension portion of the consent process by clarifying the patient’s or surrogate’s perception of the situation. Questions such as “What additional information do you need to help you make this decision?” or “What do you understand are the goals of this treatment?” help highlight the patient’s interests and comprehension of the situation.

Decisions must be reached voluntarily, and any threat of coercion, manipulation, duress, or deceit is unethical. Voluntary decisions uphold the principle of respect for persons and support the concept of self-determination. In addition, the patient must be capable of making decisions about medical care. Competence is a legal term and reflects judicial involvement in the determination of a patient’s decision-making capacity. Capacity reflects the ability of an individual to participate in the medical decision-making process. Determining capacity is discussed in the next section.

The intent of the informed consent process is based on the principle of autonomy. In theory, the consent process provides an individual with the necessary information to compare options and make a reasoned choice. Unfortunately, the consent process is handled more as an event than a process. The focus is to “get consent” rather than to help the patient gain an understanding of the proposed treatment. The progressive care nurse must be sensitive to the timing of such discussions and should attempt to optimize the environment and enhance the patient’s and family’s ability to participate in the decision-making process. Interactions should be uninterrupted, free from distractions, during intervals when the patient is fully awake, and, if desired by the patient, in the presence of loved ones.

Nurses have both a moral and a legal duty in the consent process. Incorrect information given with the intent to deceive or mislead the patient or family must be reported according to institutional guidelines and in some states may qualify as professional misconduct to be reported to the profession’s state board. The ANA Code of Ethics for Nurses portrays the nurse’s role during the consent process as a patient advocate upholding the patient’s right to self-determination. Therefore, the nurse must respect the competent patient’s choice and support the patient’s decisions even if the decision is contrary to the judgments of the healthcare team.

Determining Capacity

Patients are presumed to possess decision-making capacity unless there are clear indications that the individual’s choices are harmful or inconsistent with previously stated wishes. Questioning another’s ability to engage in the decision-making process should be executed with caution. Value laden judgments of an individual’s capacity, such as restricting involvement based on mental illness or advanced age, should be avoided. Cultural, religious, or ethical differences should not be misinterpreted as evidence of incapacity. In addition, evaluations of capacity based on the presumed outcome of the decision are equally unjust. Capacity to make decisions is based on the patient’s physical and mental health and the ability to be consistent in addressing issues. Capacity is not based on the ability to concur with healthcare providers or family members. Instead, a functional standard to evaluate capacity is recommended. At many institutions, this functional standard is used to create a policy for establishing decisional capacity.

The functional standard of determining capacity focuses on the patient’s abilities as a decision maker rather than on the condition of the patient or the projected outcome of the decision. The three elements necessary for a patient to meet the functional standard are the abilities to comprehend, to communicate, and to form and express a preference.

The ability to comprehend implies that the patient understands the information relevant to the decision. A patient must exhibit abilities sufficient to understand only the facts pertinent to the prevailing issue. Therefore, orientation to person, place, and time does not guarantee or preclude the patient’s ability to understand and comprehend the relevant information.

Decision-making capacity requires a communication of the decision between the patient and healthcare team. Communication with very ill patients often is compromised by pharmacologic or technological interventions. The progressive care nurse should attempt to remove barriers to communication and advance the patient’s opportunity to engage in the decision-making process.

The final component essential for evaluating functional capacity is evidence of the patient’s ability to reason about his or her choices. An individual’s choices should reflect the person’s own goals, values, and preferences. To evaluate this aspect, comments such as “Tell me about some of the most difficult healthcare decisions that you had to make in the past,” or “Describe how you reached the decision you did,” are useful. The patient should recount a pattern of reasoning that is consistent with personal goals and that reflects an accurate understanding of the consequences of the decision.

When the patient lacks decision-making capacity, and attempts to control factors and return the patient to an autonomous state are unsuccessful, the healthcare team must rely on other sources for direction in approximating the patient’s preferences. Advance directives and surrogate decision makers are two ways in which the patient’s choices can be understood.

Advance Directives

The Patient Self Determination Act (PSDA), effective December 1, 1991, is a federal law that requires healthcare institutions receiving Medicare or Medicaid funds to inform patients of their legal rights to make healthcare decisions and execute advance directives. The purpose of the PSDA is to preserve and protect the rights of adult patients to make choices regarding their medical care. The PSDA also requires institutions to inform individuals of relevant state laws surrounding the preparation and execution of advance directives.

Advance directives are statements made by an individual with decision-making capacity that describe the care or treatment he or she wishes to receive when no longer competent. Most states recognize two forms of advance directives, the treatment directive, or “living will,” and the proxy directive. The treatment directive enables the individual to specify in advance his or her treatment choices and which interventions are desired. Usually treatment directives focus on cardiopulmonary resuscitation (CPR), mechanical ventilation, nutrition and hydration, and other life-sustaining technologies.

Proxy directives, also called the durable power of attorney for health care, expand the sphere of decision making by identifying an individual to make treatment decisions when the patient is unable to do so. The appointed individual, a relative or close friend, assumes responsibility for healthcare decisions as soon as the patient loses the capacity to participate in the decision-making process. Treatment decisions by the healthcare proxy are based on a knowledge and understanding of the patient’s values and wishes regarding medical care. Most states have statutory provisions that recognize the legal authority of the healthcare proxy, and this individual is given complete authority to accept or refuse any procedure or treatment on behalf of a patient who lacks capacity.

Although most adults should complete both, a treatment and proxy directive, the proxy directive has some important advantages over a treatment directive. Many treatment directives are valid only under certain conditions. Terminal illness and/or an imminent death are common limitations required before the patient’s treatment directive is enacted. Such restrictions are not relevant in proxy directives, and the sole requirement before the proxy assumes responsibility on the individual’s behalf is that the patient lacks decisional capacity. Furthermore, the proxy directive enables the authorized decision maker to consider the contextual and unique features of the specific situation before arriving at a decision. A treatment directive may indicate refusal of mechanical ventilation but a durable power of attorney speaking for the patient with a reversible acute respiratory process may consent to a trial of noninvasive ventilation. In this way, the benefits and burdens of proposed interventions are considered in partnership with the knowledge and understanding of the patient’s preferences and values.

If a patient lacks decision-making capacity and has not previously designated a proxy decision maker in an advance directive, the healthcare team must identify an appropriate surrogate to make decisions on the patient’s behalf. Guidelines for identifying surrogate decision makers vary from state to state. Generally, family members have the patient’s best interests in mind, and many state statutes identify a hierarchy of relatives as appropriate surrogate decision makers.

Regardless of whether the decision maker is a designated proxy or family member, the process of making decisions on behalf of the incapacitated patient is difficult and arduous. If the patient left no written treatment directive, the surrogate decision maker and the designated proxy follow the same guidelines for making decisions. The decisions are made based on either the substituted judgment standard or the best interest standard.

Substituted Judgment

When a patient previously has expressed his or her wishes regarding medical care, the surrogate decision maker invokes the standard of substituted judgment. The patient’s goals, beliefs, and values serve to guide the surrogate in constructing and shaping a decision that is congruous with the patient’s expressed wishes. An ideal interpretation of substituted judgment is that the patient, if competent, would arrive at the same decision as the surrogate. This standard originates in the belief that when we know someone well enough, we often are able to determine how he or she would have reacted to a particular situation, and therefore can make decisions on that person’s behalf.

Best Interests

The best interest standard is used when the patient’s values, ideals, attitudes, or philosophy are not known; for example, a patient who never gained decision-making capacity and lacked competence throughout his or her life would not have the opportunity to articulate wishes and beliefs about health care. Using the best interest standard, the surrogate decision maker determines the course of treatment based on what would be in the patient’s best interests, considering the needs, risks, and benefits to the affected person. This burden/benefit analysis includes considering the relief of suffering, restoration of function, likelihood of regaining capacity, and quality of an extended life.

Although neither the best interest standard nor the substituted judgment standard is problem free, when possible the decision maker for an incapacitated patient should follow the principles of substituted judgment. Knowledge of the patient’s underlying values should guide the surrogate and will most likely result in a decision reflective of the patient’s interests and well-being. Nurses support surrogate decision makers in the same way that they serve as patient advocates by providing consistent, accurate information and asking questions to clarify the patient’s values.

End-of-Life Issues

Decisions to Forego Life-Sustaining Treatments

Decisions to forego life-sustaining treatments are made almost daily in the hospital setting. The prevalence of these decisions does not diminish the difficulty that patients, families, nurses, and physicians face when considering this treatment decision. The model for this decision-making process is a collaborative approach that promotes the patient’s interests and well-being.

The patient’s interests are best served when information is shared among the caregivers, patient, and family in an open and honest manner. Through this process, a plan of care that reflects the patient’s goals, values, and interests is developed. Continued collaboration is essential to ensure that the plan promotes the patient’s well-being and reflects the patient’s preferences. However, the patient may determine that the current treatment plan imposes more burdens than benefits, and may choose to forego new or continued therapies.

Grounded in the principle of patient autonomy, patients with capacity have the moral and legal right to forego life-sustaining treatments. The right of a capable patient to refuse treatment, even beneficial treatment, must be upheld if the elements of informed consent are met and innocent or third parties are not injured by the refusal. Ongoing dialogue among the healthcare team, family, and patient is appropriate so that mutually satisfactory realistic goals are adopted. Patients must understand that refusal of treatment will not lead to inadequate care or abandonment by members of the healthcare team.

In patients without decisional capacity, the determination to withdraw or withhold treatments is made by the identified surrogate. If the wishes and values of the patient are known, the surrogate makes treatment decisions based on this framework. If, however, the patient’s values or wishes are unknown, or the patient never had capacity to express underlying beliefs, the decision maker must consider and weigh the benefits and burdens imposed by the particular treatments. Any treatment that inflicts undue burdens on the patient without overriding benefits or that provides no benefit may be justifiably withdrawn or withheld. If the benefits outweigh the burdens, the obligation is to provide the treatment to the patient.

In cases where the identified surrogate is not acting in the patient’s best interests, healthcare professionals have a moral obligation to negotiate an acceptable resolution to the problem. Progressive care nurses should intervene when the best interest of the patient is in question. If extensive attempts to resolve the differences through the use of internal and external resources are unsuccessful in facilitating an acceptable solution, the healthcare professional should seek the appointment of an alternative surrogate. Often, the burden of proof is on the healthcare professional to justify the need for an alternative decision maker. In situations in which the patient’s life is threatened and the refusal of treatment by the surrogate would jeopardize the patient’s safety, the healthcare team must seek an alternative surrogate without prolonged discussion with the identified surrogate. This situation arises when parents who are Jehovah’s Witnesses refuse a life-saving blood transfusion for their child. The healthcare team can rapidly acquire court approval to transfuse the minor. In less emergent situations, attempts to convince the surrogate of the need for treatment and to reach a satisfactory settlement may take more time.

In the case “The Patient’s Wishes,” members of the healthcare team interpreted the patient’s actions as a decision made by a competent individual. They realized that even after aggressive treatment the patient would most likely be dependent on hemodialysis, and therefore his independence and living environment would change. On the other hand, his daughter saw her father’s act as a reflection of his depression from Parkinson disease and the loss of his wife. His daughter believed that additional antidepressant medications and more frequent psychiatric evaluations would renew her father’s desire to live. In this case, both parties believe they are advancing the patient’s best interests. Reflection on the patient’s life, work, actions, religion, and beliefs helps all parties to clarify the patient’s values, and may help in the development of an acceptable resolution.

Conflicts regarding the withdrawal of life-sustaining treatments often reflect differences in values and beliefs. Typically, healthcare professionals value life and health. When patients or surrogates choose to forego treatments that have minimal benefit, relinquishing the original goal of restoring health is difficult. This dilemma is particularly apparent in the acute care setting, where actions and interventions are aggressive, dramatic, and often life saving. Shifting from this model to a paradigm that advocates for a calm and peaceful death requires the progressive care nurse and healthcare team to relinquish control and to change the treatment goals to promote comfort and support the grieving process. The intensity required to support the patient and family during the process of withdrawal of treatment must also be valued and appreciated by healthcare professionals in all settings.

 


       ESSENTIAL CONTENT CASE
The Patient’s Wishes


 

In some circumstances, surrogate decision makers insist on treatment that members of the healthcare team believe is burdensome and nonbeneficial for the patient. Frequently, the request for futile treatment reflects the surrogate or patient’s desire to be assured that “everything” is being done to eradicate the disease or restore health. Emotional, financial, and social concerns can all motivate individuals to pursue nonbeneficial, and even harmful, treatments. If patients and surrogates are kept fully informed of the goals and the successes and failures throughout the course of treatment, the request for futile therapies is less likely. If, after numerous discussions, the patient or surrogate continues to request futile treatment, eliciting help from an uninvolved party, such as an ethics committee, can facilitate discussions. Healthcare institutions often have policies that delineate the responsibilities of the caregiver and the resources within the institution to resolve these unusual situations. In rare circumstances, judicial involvement is necessary to determine the outcome of the case.

Nutrition and Hydration

To many nurses and healthcare consumers, the provision of nutrition and hydration is fundamental to patient care. Therefore, nurses may be distressed when the withdrawal of nutrition and hydration are considered. However, the provision of nutrition and hydration is a medical intervention and thus has both risks and benefits. Medical nutrition and hydration are administered through intravenous access, nasogastric and duodenal feeding tubes, or via gastrostomy. The image of gently spoon feeding a dying patient is replaced with the reality of meeting the nutritional requirements through invasive and uncomfortable technologies.

Provision of medical nutrition and hydration should occur following a careful burden-benefit analysis. If medical nutrition and hydration support can expedite the patient’s return to an acceptable level of functioning (as defined by the patient or surrogate), then provision of the therapy is beneficial. When uncertainty exists, the presumption should be to provide nutrition and hydration. On the other hand, when continued provision of nutrition and hydration will not effectively restore the patient to a functional status consistent with the patient’s values, the treatment may be discontinued.

Pain Management

When faced with a potentially life-limiting disease process, issues regarding the aggressive management of pain and comfort develop. Although palliation or relief of troubling symptoms is a priority in the care of all patients, once the decision to forego life-sustaining measures is made, palliation becomes the main focus of all care. In some circumstances, patients experience distressing symptoms despite the availability of pharmacologic agents to manage the uncomfortable effects of chronic and terminal illness. Whether due to a lack of knowledge, time, or a deliberate unwillingness to prescribe the necessary medication, inadequate symptom management is unethical. Nurses are obligated to ensure that patients receive care and treatments that are consistent with their choices. There are few patients in whom adequate pain management cannot be achieved. The ANA Position Statement on pain management and control of distressing symptoms in dying patients delineates the role of the nurse in the assessment and management of pain.

When patients require large doses of medications, such as narcotics, to effectively alleviate their symptoms, providers may be concerned that the side effects of such doses may hasten the patient’s death. The ANA Code for Nurses helps clarify this concern for nurses by affirming that nurses “should provide interventions to relieve pain and other symptoms in the dying patient even when those interventions entail risks of hastening death.” The essential element in this situation is the nurse’s intent in providing the medication. Because the intent is to relieve pain and suffering, and not to deliberately hasten death, the action is morally justified.

The concept that supports this reasoning is called the principle of double effect.

This principle states that if an action has both a good and bad effect, a person is justified in taking that action if the intent was the good effect, the bad effect was a possible but not certain outcome of the action, and there was no additional course of action which could produce the good effect and avoid the bad one. The Supreme Court cited the principle of double effect in a decision that distinguished palliative care from assisted suicide. A provider who assists in a patient’s death intends to cause that persons death, which is ethically and legally distinct from a provider who seeks to control symptoms and gives medications that may, inadvertently, hasten death.

Resuscitation Decisions

Acutely ill patients are susceptible to sudden and unpredictable changes in cardiopulmonary status. Most hospitalized patients presume that, unless discussed otherwise, resuscitation efforts will be instituted immediately upon cardiopulmonary arrest. In-hospital resuscitation is moderately successful, and delay in efforts significantly reduces the chance of the victim’s survival. The emergent nature, the questionable effectiveness, and the presumed provision of CPR contribute to the ethical dilemmas that surround this intervention.

Do Not Resuscitate Orders

“Do not resuscitate” (DNR) or “no code” are orders to withhold CPR in the event of cardiac or respiratory arrest. Other medical or nursing interventions are not influenced directly by a DNR order. In other words, the decision to forego CPR is not a decision to forego any other medical interventions. The communication surrounding this decision is one of the most important elements in designing a mutually acceptable treatment plan for a particular patient. Appropriate discussions with the patient or surrogate must occur before a resuscitation decision is made. Conversations about resuscitation status and the overall treatment goals should occur with the patient or surrogate, physician, nurse, and other appropriate members of the healthcare team. Open communication and a shared understanding of the treatment plan are essential to understanding and responding to the patient’s interests and preferences. Once a decision is made regarding resuscitation status, the physician must document the discussion and decision in the medical record according to the institution’s policy. When the issue of resuscitation status is not addressed with the patient or surrogate or the decision is not documented or communicated with caregivers, then a code is initiated, risking the provision of unwanted care.

Slow Codes or Partial Codes

The failure to define the DNR status and other treatment or nontreatment decisions often reflects the absence of an overall treatment goal. Patients or their surrogates must be involved in decisions surrounding resuscitation. Although some providers believe that decisions to withhold CPR can be made without involving patients or surrogates, such decisions violate the principle of patient autonomy. Just as patient’s consent to other interventions in the plan of care, including decisions to omit particular treatments, the provision or withholding of CPR is based on discussions with the patient and family. In some instances healthcare providers rely on “slow” or “partial” codes, in which interventions are administered with less effort and speed than the emergent situation demands, increasing the likelihood that the resuscitative effort will be unsuccessful. Slow or partial codes are always unethical and often indicate failed communication between the patient and family and the healthcare team. It is the responsibility of healthcare providers to explain CPR, ensure that the family and patient understand both the risks and benefits and likely outcomes of the procedure, and either provide or withhold the intervention in accordance with the patient and family’s wishes.

Most institutions have policies that address the process of writing and implementing a DNR order. In addition, many states have an approved process and format to indicate a desire to forgo life support so that this wish can be conveyed across all healthcare settings. Examples of such forms include the Durable DNR form in Virginia and the Physician Order for Life Sustaining Treatment or POLST form in California. Nurses should be familiar with the forms available in the states where they practice, understand institutional policies for recognizing such forms, and encourage patients and families to use these means to convey their wishes. These forms are tools for preventing the provision of undesired care.

Family Presence During Resuscitation

The practice of allowing family members to be present during resuscitative efforts and other invasive procedures is a key consideration in the ethical care of critically and acutely ill patients. Protocols or procedures for allowing family presence may be available on an individual nursing unit or for all nursing units in a given institution and can guide nurses in providing this care. Some considerations include having a staff member available to narrate the experience for the family members, and documenting family presence in the patient’s chart. AACN’s 2010 Practice Alert lists the strong evidence in favor of allowing family members to be present during resuscitation and invasive procedures, noting primarily the benefit of this practice for family and patients. Thus, the principle of beneficence supports family presence during resuscitation and other invasive procedures. The ethic of care similarly supports this practice as it acknowledges the priority of family relationships.

BUILDING AN ETHICAL ENVIRONMENT

Values Clarification

One of the most useful and essential skills offered by nurses is that of assisting the patient and family in values clarification. This process helps families to weigh the burdens and benefits of medical interventions and develop a framework of the patient’s preferences and interests. Additionally, families are less encumbered during the bereavement process, when reflecting on the patient’s hospitalization, if they feel the decisions they made for the patient reflect the patient’s values.

Provide Information and Clarify Issues

Patients and families rely on nurses to clarify medical information and support their exploration of the meaning of different treatment decisions. The trusting relationship that develops is based on the nurse’s ability to communicate and understand the patient’s needs. Questions that help unveil patients’ families’ perceptions of the situation include: “What information do you need to make this decision?” “What do you understand of your (or your loved one’s) condition?” and “What are your fears about being sick?”

The information provided to patients and surrogates must be more than simply disclosing facts. The dialogue must be ongoing, open, honest, and expressed with concern. Because the understanding of new knowledge is often rooted in past learning, the nurse begins by assessing the patient’s or surrogate’s prior experiences with the healthcare system. Patients and families often draw conclusions or create relationships based on incomplete or inaccurate interpretations of information. Nurses play a key role in facilitating communication and translating discrepancies in perceptions.

Recognize Moral Distress

Moral distress refers to the suffering that occurs when individuals feel compelled to act in ways they think are unethical. Nurses can feel trapped between institutional constraints, medical directives, patient and family wishes, and personal beliefs, duties, and values. Although all ethical problems are challenging, situations that result in moral distress are particularly troubling because they may have lasting effects on the individual’s professional and personal life. Recognizing situations that contribute to moral distress and developing strategies to preserve moral integrity are essential tools for the progressive care nurse. The AACN booklet 4 A’s to Rise above Moral Distress provides an approach to address the situations that create moral distress and to prevent the harmful consequences that it causes. Increasingly, institutions are recognizing the importance of addressing moral distress in the workplace. Many other strategies are being designed and implemented, such as unit-based conversations in ethics and moral distress consult services.

Engage in Collaborative Decision Making

Nursing offers a distinct perspective that is grounded in humanistic and caring values. Nurses recognize, interpret, and react to the patient’s and family’s response to health problems. Factors such as the patient’s ability to adapt to changes in health, cope with a diagnosis, or adjust to a treatment are valuable contributions to a model of shared decision making. Because nursing embraces this viewpoint, nurses must have a consistent presence on the healthcare team. Patients and families expect and need nurses to be actively involved in planning and implementing the plan of care.

In a collaborative model, the nurse’s contributions and perspectives are valued, heard, and acknowledged. The nurse, in exchange, is open to the contributions of other team members, actively listening and encouraging their participation. When nurses are absent from the circle of decision making, moral problems occur and communication falters. Every progressive care nurse must remain involved, attached, and committed to the process of shared decision making and collaborative interaction.

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AACN Position Paper: moral distress: http://www.aacn.org/wd/practice/docs/moral_distress.pdf. Accessed February 7, 2013.

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American Nurses’ Association. Position Statement on Nursing Care and Do-Not-Resuscitate (DNR) Decisions. Washington, DC: ANA; 2003.

American Nurses’ Association. Position Statement on Pain Management and Control of Distressing Symptoms in Dying Patients. Washington, DC: ANA; 2003.

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