Value-based decision-making

In pluralistic societies (such as the United States) where moral diversity is prevalent, individuals or groups may have competing or conflicting moral claims. These moral claims are based on differing values that are not easily compared. For example, some individuals may place great value on the extension of life even if it entails significant burdens, whereas other individuals may value the quality of life more highly than life extension. The clinician should make every effort to identify and understand the moral values that underlie the positions of different stakeholders and understand that these values are culturally embedded.

State and national laws and legal precedence

The law interacts frequently with bioethics in several important ways. First, the answer to many questions that are framed as ethical issues is based on the law (e.g., age of competency for decision-making). Second, at times, legal action may be required for the resolution of ethical issues (e.g., a court-appointed decision-maker may be required in certain cases of medical neglect). Finally, legal precedent may help inform analogous bioethics cases (e.g., previous cases regarding emergent blood transfusions or the prolongation or withdrawal of life support).

Professional codes and healthcare organization policies and regulations

Most medical disciplines adhere to a professional code of ethics. ^, These codes should be considered in ethical analysis. Additionally, healthcare organizations issue various policies around ethics (e.g., parental request for potentially inappropriate therapies, allocation of resources, conscientious objection, or disclosure of medical error) with which the ethicist and clinician must be familiar. Finally, national healthcare organizations—such as Medicaid and Medicare, as well as insurance companies—may have regulations that impact ethical practice (such as the Centers for Medicare and Medicaid Services [CMS] requirement that all patients older than 18 years be asked about an advance directive on admission to the hospital).

Communication, negotiation, and mediation

A large portion of ethical issues stems from communication that has broken down. In many cases, what may seem like an intractable dispute can be resolved by repairing communication between parties. Resolving some communication problems may be facilitated by the ethicist, a role in which expert conflict mediation skills prove valuable. For example, staff distress may be addressed with a staff-only meeting to better understand the roots of the distress and allow a venue in which differences of opinion can be aired. Another example includes family members who feel that their goals are unheard or misunderstood and who may benefit from a series of facilitated care conferences with the medical team at which a common understanding of the situation and goals of care might be achieved.

Prevailing ethical theories and norms

Certainly, the ethicist should be knowledgeable about prevailing ethical theories and norms and adept at applying them to bioethical dilemmas (see later section for more details about specific ethical theories). There is no overarching ethical theory that can resolve all ethical dilemmas. Instead, ethical dilemmas are often examined under the lens of several theories in order to come to a “best possible” recommendation. It is important to recognize that these ethical theories and norms are not static and that they are society and culture dependent.

Critical care team

Many ethical issues can and should be addressed by the intensivist or PICU team. Just as pediatric intensivists are trained to provide primary cardiology, neurology, nephrology, palliative, and other specialized care with subspecialty consultation in complex cases, the same should be true for bioethics. All pediatric intensivists should be trained in and pursue continuing education in bioethics. Ethical issues are common in the PICU; all intensivists should have a solid understanding of the basic aspects involved in identifying, analyzing, and resolving bioethical dilemmas. This will require an understanding of the basics of the domains mentioned earlier as well as comfort with a basic tool set for approaching ethical issues. Routinely addressing basic ethical issues may resolve simpler bioethical issues quickly, help in deescalating more complex conflicts before they become intractable, and, in some cases, prevent issues from arising in the first place.

Ethics consultant

For more complex bioethical dilemmas, pediatric bioethics specialists may be consulted. Ethicists come from a variety of disciplines, training, and experiences. Ethics consultants should have advanced skills in ethical assessment and analysis, ethical and hospital processes, and interpersonal skills in negotiation, communication, and facilitation. Additionally, ethics consultants should be experienced in advanced moral reasoning and ethical theory, be facile with advanced bioethical concepts, and have a strong knowledge base about how healthcare systems, clinical context, institutional policies, and health law impact ethical decisions. The pediatric bioethics consultant should also be knowledgeable about the unique ethical issues that arise in the pediatric setting.

Ethics committee

Some ethical issues may require resolution or final recommendation from a full ethics committee composed of members from a wide variety of disciplines (including nonmedical members of the local community) and representing a diverse set of values, experiences, and perspectives. Ideally, ethics committees should promote a fair process and reduce the risk of arbitrariness. ^, Examples of issues that are optimal for an ethics committee review include cases involving an intractable conflict of values, potentially high-visibility cases, and institutional ethics issues. Ethics committees may also perform post-hoc review of cases handled by ethics consultants for purposes of quality improvement.

Consequentialism

A consequentialist approach to moral decisions will focus primarily on the predicted outcomes of various choices. Of reasonable options available, the best choice will be the one most likely to provide the most favorable balance of benefit versus burden. Generally, in bedside decision-making, a consequentialist approach is based in the principle of beneficence, focusing the analysis on the benefits and burdens to the patient .

Deontology

A deontologic approach to moral decisions will focus on moral duties, rights of others, and ethical rules and principles, regardless of the ultimate outcome of the decision. A deontologist might, for example, insist on the application of a rule to always tell the truth, rather than attempting to assess whether telling the truth would result in a good or bad outcome.

Principalism

Most medical ethicists agree on a small number of principles that should generally guide medical behavior. These include respect for autonomy, beneficence, nonmaleficence, and justice. The principle of respect for autonomy places the desires and decisions of the competent patient as the most important consideration in deciding on a course of action. Because individual values about benefits and harms differ, individual wishes should be respected. The clinician’s primary duty is to ensure that the patient has the information required to make a decision and understands that information. Some have argued for a broader principle of respect for persons on the basis that there are ways of respecting persons that are important even for nonautonomous individuals (such as children). The principle of beneficence requires that clinicians take positive steps to help their patients and that medical interventions should ultimately benefit the patient. This principle demands that the primary consideration in all therapeutic decisions be the good of the patient. Closely related to the principle of beneficence is the principle of nonmaleficence. Nonmaleficence holds that clinicians have a duty to avoid causing unnecessary harm to patients. In the PICU, many medical therapies (such as intubation) inadvertently cause suffering or are burdensome; the principle of nonmaleficence requires that the benefit of these procedures justify the harm, burden, or suffering that may occur as a result of their use. The principle of double effect (see Chapter 18 for further details) is sometimes used in determining whether an action that causes both benefit and harm can be justified. At its core, this principle requires that clinicians always consider the suffering of the patient when making medical recommendations. Finally, the principle of justice is a complicated principle that seeks fairness when competing claims exist. Among other things, the principle requires that scarce resources be distributed fairly and not based on irrelevant factors. One limitation of principalism is that it lacks guidance on how to prioritize these principles when they are in conflict with one another in an individual case.

Virtue-based ethics

Virtue-based theories of ethics emphasize the moral character of the individual clinician. In other words, the clinician who possesses desirable, virtuous characteristics is more likely to make the best ethical choice most consistently. Virtue-based approaches tend to be most helpful when addressing boundary issues, conscientious objection, or other issues related to professionalism and are often less helpful in the more typical conflicts that occur in the patient care setting.

Casuistic ethics

A casuistic approach to ethical issues analyzes the current ethical issue by comparing it with prior similar cases and others’ past experiences and previous outcomes to help determine the best decision. It is similar to the reasoning used in legal cases, in which key precedential cases may be used as “anchors” for appropriate resolutions. The analysis then seeks to explore similarities and differences between the current situation and those precedential cases in determining whether similar or different resolutions would be most appropriate.

Care ethics

Ethics of care shifts the moral question from “what is just?” to “how should we respond?” Instead of basing decisions on universal standards and impartiality, the ethics of care argues that caring for others and preserving relationships are the foundations of morality.

Narrative ethics

Narrative approaches to ethical issues emphasize the importance of understanding cases by taking all their details and complexities into account while seeking to avoid reducing cases to essential elements and then applying a rule or principle. In this approach, details matter, and the resolution of a specific situation may be determined by how each of the possible options will best fit the narrative of the patient’s life (or death).

Communitarian ethics

Communitarianism shifts focus from the individual to the family and community. It finds intrinsic value in social obligation and the common good rather than in individual autonomy. What is in the best interest of the family or society supersedes the best interest of the individual patient.

During the process of ethical analysis and consideration of recommendations, it may be helpful to consider whether a solution exists that has not yet been considered by the different stakeholders. Initially, in a conflict, stakeholders may strongly advocate for their specific requests. Through a thorough examination of the case, optimization of communication, and a deeper understanding of the underlying goals and values of the stakeholders, an alternative solution that may satisfy all stakeholders, at least to some degree, may become apparent. Clinical ethicists should always seek to identify these alternate, often creative, solutions.

Address staff distress

Medical staff distress is often an important component of ethical issues. Staff may experience moral distress from continuing or not pursuing a particular plan for a patient. Addressing staff distress through individual conversations or staff-only meetings may help to deescalate the conflict. Failure to address staff distress may contribute to burnout, job dissatisfaction, and compassion fatigue.

Support the patient and family

Patients and families involved in an ethical dilemma are often under a tremendous amount of stress. This is in addition to the stresses that result simply from having a child admitted to the PICU. Families may perceive a lack of power and support in the PICU environment—even the ethics consultants and committees may be seen as part of the power structure of the hospital. It is important to identify advocates and support mechanisms for patients and families under these conditions.

Doctrine of informed consent

The doctrine of informed consent applies to both medical decisions and research. Informed consent must satisfy four requirements that apply when surrogates provide permission as well as when consent is obtained directly from patients. Disclosure means that the clinician should supply the patient with sufficient information that a “reasonable person” would desire to be able to make an informed medical decision. Understanding means that the clinician should assess the patient’s understanding of the proposed course of action, the risks and benefits of that course of action, and any available alternatives along with the risks and benefits associated with them. Understanding may be particularly impaired in the critical care setting, in which the high stakes and time pressures can impact the ability to achieve optimal understanding. Capacity means that the patient must meet legal requirements for competency, be able to understand the medical decision, form a reasonable judgment based on the consequences of the decision, and be able to communicate that decision to others. Legally, children younger than the age of 18 years are not considered competent for medical decision-making with the exception of emancipated and mature minors. Emancipated minors are considered competent on the basis of characteristics that are defined by state law but that may include pregnancy, parenthood, or establishing financial independence. Mature minors represent another category that is defined by state law whereby a minor, usually above a certain age, can be judged competent to make certain medical decisions. Most states require a judge to make these determinations, and the judge may restrict the determination to the medical decisions at hand. Voluntariness means that decisions must be voluntary and not subject to coercion, manipulation, or undue influence. Importantly, physicians should not withhold or deemphasize information in an effort to manipulate patients.

Emergency exception to informed consent

Under specific emergent circumstances, informed consent may be forgone in order to provide necessary lifesaving medical interventions. The emergency exception requires that the medical care in question is required emergently, the patient is incompetent, that no surrogates are readily available, and that medical intervention is needed to save the patient’s life or prevent permanent disability.

Advance directives

Advance directives allow competent persons to document their values and medical decision-making preferences before becoming incapacitated patients. Living wills document values and desires in writing, and healthcare durable power of attorney designates a surrogate who presumably understands the patient’s values and desires. The Patient Self-Determination Act requires all Medicare/Medicaid participating institutions to inform patients older than the age of 18 years of their rights to formulate advance directives on admission. Advance directives for children can also be developed by parents or other guardians with input from children as appropriate.

Child and adolescent decision-making

Children younger than the age of 18 years are generally considered not competent to make medical decisions unless they meet criteria for emancipation or mature minor status. However, most agree that the opinions of children and adolescents should not simply be disregarded. Adolescents should be involved in discussions about their healthcare and should be offered the opportunity to voice their feelings, opinions, and concerns. They should also be provided reasonable opportunities to make choices and have those choices respected. On the other hand, there is no consensus as to whether any adolescent is truly mature enough to refuse lifesaving treatment in situations in which there is likely to be a good prognosis with a proven intervention. Although adolescents older than the age of 13 years are generally capable of making rational decisions, they are less likely to do so under conditions of high emotion or intense pressure. They are more likely than adults to act impulsively without full consideration of consequences, and they tend to weigh current rewards and harms more strongly than future consequences of a decision.

Many factors would be relevant in determining whether an adolescent possesses sufficient maturity to make a life-altering medical decision. Minimally, however, judges and clinicians should require a high level of psychosocial maturity and consider the adolescent’s ability to understand and reason, project meaningfully into the future, express a relatively settled set of values and beliefs, and demonstrate that the adolescent’s decision is driven more by long-term interests than short-term concerns. The chances of a good outcome with treatment and the burden of the proposed interventions are also relevant considerations. In general, it would be unusual to allow an adolescent to refuse interventions in a situation in which the parents would not be allowed to make that decision for the adolescent.

Shared decision-making

The patient autonomy movement that began in the 1960s moved medical decision-making away from a predominantly paternalistic approach. There has been some concern, however, that in an effort to prioritize patient autonomy, patients are all too frequently provided with a menu of options without sufficient guidance in decision-making. The middle ground is shared decision-making. Shared or collaborative decision-making should combine the clinician’s expert knowledge and experience with the patient’s and family’s values and preferences. ^, Even though patients are rightfully granted autonomy to give informed consent, clinicians should not abdicate responsibility for recommending a course of action based on the patient’s values and guiding the patient through the decision-making process (see Chapter 16 for additional discussion).

Surrogate decision-making for previously competent patients

In the category of the formerly competent patient, the surrogate decision-maker (parent, spouse, etc.) must adhere to the substituted judgment standard . In other words, the surrogate is asked to make decisions most consistent with what the patient would have wanted. This is an attempt to preserve the patient’s autonomy and honor the patient’s values. There may be some cases in the PICU for which this standard applies, such as older adolescents who have been living with chronic disease or young adults who have been admitted to the unit.

Surrogate decision-making for never-competent patients

In the category of the not previously competent patient (which includes the majority of patients in the PICU), surrogates are held to a different standard—the best-interest standard . In theory, most children have not yet developed stable values and beliefs; therefore these values cannot be known and cannot be used for surrogate decision-making. The best-interest standard attempts to maximize the benefit-to-burden ratio for the patient from the patient’s perspective. This, of course, is open to interpretation (and conflict) regarding how to calculate and weigh the various benefits and burdens as they would be experienced by the patient. Quality of life is a phrase that arises commonly in conversations about a patient’s best interest. It is important to keep in mind that quality of life is a subjective and value-based assessment. Clinicians should be aware of their own biases, and caution should be used when applying this concept to the best-interest standard.

Parents as surrogate decision-makers

Parents (or guardians) are generally empowered to make healthcare decisions on behalf of their children and, with few exceptions, have the legal authority to do so. From an ethical perspective, parents are generally considered the default surrogate decision-makers for their children because they are most likely to understand the unique needs of each child and are presumed to desire what is best for the child. Additionally, some degree of family autonomy is considered an important social value. Finally, in settings of uncertainty, family values and competing family interests may be considered.

Limits of parental refusals

In most situations, parents are granted wide latitude in the decisions they make on behalf of their children; the law has respected those decisions except when they place the child’s health, well-being, or life in jeopardy. ^, Parental authority is not absolute, however—when a parent or guardian fails to adequately guard the interests of a child, the decision may be challenged and the state may intervene. A clinician’s authority to interfere with parental decision-making is limited. Except in emergency situations in which a child’s life is threatened imminently or a delay would result in significant suffering or risk to the child, the physician cannot do anything to a child without the permission of the child’s parent or guardian. Touching (physical examination, diagnostic testing, or administering a medication) without consent is generally considered a battery under the law. The clinician’s options include either tolerating the parents’ decision (while continuing to try to convince them to act otherwise) or involving a state agency to assume medical decision-making authority on behalf of the child.

Only the state can order a parent to comply with medical recommendations. This can take different forms but most frequently either includes involvement of child protective services (under a claim of medical neglect) or a court order. Both options represent a serious challenge to parental authority and will generally be perceived as disrespectful and adversarial by parents. Such action interferes with family autonomy, can adversely affect the family’s future interactions with medical professionals, and can negatively impact the emotional well-being of the child. Neither should be undertaken without serious consideration. Before initiating involvement of state agencies to limit parental authority and override parental refusal, the clinician must establish that (1) the recommended course of action is likely to benefit the child in an important way, (2) the treatment is of proven efficacy with a reasonable likelihood of success, (3) the parent or surrogate’s decision to refuse intervention places the child at significant risk of serious harm in comparison with the recommendations of the healthcare team (applying the harm principle ), and that (4) all attempts at mediation and negotiation to find a mutually acceptable solution have been exhausted ( Box 17.1 ).

• BOX 17.1

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