146 SECTION II I Pediatric Critical Care Psychosocial and Societal Recognition and Clarification of Ethical Issues The first step in approaching any ethical issue is to recognize that the situation ra[.]
146 S E C T I O N I I I Pediatric Critical Care: Psychosocial and Societal Clinical reasoning Problem Clinical ethical reasoning Problem TABLE CASES: A Step-by-Step Approach to Ethics 17.1 Consultation C History Medical facts Exam Medical goals Data Differential diagnosis, clinical assessment A S Differential diagnosis, ethical assessment S Treatment plan Best course of action • Fig 17.1 Comparison between clinical reasoning and clinical ethical reasoning (From Kaldjian L, Weir R, Duffy T A clinician’s approach to clinical ethical reasoning J Gen Intern Med 2005;20:306–311.) Recognition and Clarification of Ethical Issues The first step in approaching any ethical issue is to recognize that the situation raises a question related to ethics Some issues may be more appropriately handled by a child protection team (when neglect or abuse is obviously the issue) or a palliative care team (when there is no conflict over the appropriateness of palliative care but help is required in transitioning to a palliative care plan; see also Chapter 16) During this first stage, it is also appropriate to assess and optimize communication Communication that has broken down is frequently a contributor—if not the basis—of ethical disputes At a minimum, improving communication commonly will help to diffuse a crisis so that the issue can be addressed productively At times, improved communication between parties may be sufficient to resolve the issue altogether Finally, once an ethical issue has been identified, the next step is to try to articulate, as precisely as possible, the nature of the ethical question Information Gathering “Good ethics requires good facts” is a common saying in bioethics circles Sound bioethical recommendations can arise only from a solid understanding of the facts involved in the case Facts include Determine whether a formal meeting is needed Engage in ethical analysis Identify the ethically appropriate decision-maker Facilitate moral deliberation about ethically justifiable options Explain the Synthesis • • • • Further information and dialogue Consider the types of information needed Identify the appropriate sources of information Gather information systematically from each source Summarize the case and the ethics questions Synthesize the Information • • • • E Further diagnostic evaluation Assemble the Relevant Information • • • • Patient goals Context Clarify the Consultation Request • Characterize the type of consultation request • Obtain preliminary information from the requester • Establish realistic expectations about the consultation process • Formulate the ethics questions Communicate the synthesis to key participants Provide additional resources Document the consultation in the health record Document the consultation in consultation service records Support the Consultation Process • • • • Follow up with participants Evaluate the consultation Adjust the consultation process Identify underlying systems issues From National Center for Ethics in Health Care Ethics Consultation: Responding to Ethics Questions in Health Care 2nd ed Washington, DC: U.S Department of Veterans Affairs; 2015:viii https://www.ethics.va.gov/docs/integratedethics/ec_primer_2nd_ed.pdf medical facts, such as the mortality rate for a procedure or condition both at the institution and nationally, alternate medical options, or an accurate assessment of the child’s medical condition Facts also include relevant contextual details, such as family culture and religion, family circumstances, available resources and support, and more A useful tool for gathering facts surrounding an ethical issue is the four categories method (see Table 17.2).7 During this phase, it is important to seek to understand the perspectives, values, and goals of the patient (if possible), the family or other surrogates, and various involved members of the medical team (including primary physicians, consulting physicians, nurses, and other staff) When possible, these perspectives should be obtained firsthand to avoid the inevitable misunderstandings that result from secondhand or thirdhand information It is important to understand stakeholders’ opinions but also the goals and values behind their opinions Often, a better understanding of the stakeholders’ underlying values and deeper goals can help to clarify stated requests and open a path to resolution Finally, identifying or refining the core ethical dilemma or primary conflict may be easier once the appropriate data have been collected and the voices of those with a stake in the situation have been heard It is an important skill and part of the assessment to be able to identify and clarify the ethical dimensions of the dilemma CHAPTER 17 Pediatric Critical Care Ethics 147 TABLE A Case-Based Approach to Ethical Decision-Making 17.2 MEDICAL INDICATION PATIENT PREFERENCES Principles of Beneficence and Nonmaleficence Principles of Respect for Autonomy • What is the patient’s medical problem? Is the problem acute? Chronic? Critical? Reversible? Emergent? Terminal? • What are the goals of treatment? • In what circumstances are medical treatments not indicated? • What are the probabilities of success of various treatment options? • In sum, how can this patient be benefited by medical and nursing care, and how can harm be avoided? • Has the patient been informed of benefits and risks, understood this information, and given consent? • Is the patient mentally capable and legally competent, and is there evidence of incapacity? • If mentally capable, what preferences about treatment is the patient stating? • If incapacitated, has the patient expressed prior preferences? • Who is the appropriate surrogate to make decisions for the incapacitated patient? • Is the patient unwilling or unable to cooperate with medical treatment? If so, why? QUALITY OF LIFE CONTEXTUAL FEATURES Principles of Beneficence, Nonmaleficence, and Respect for Autonomy Principles of Justice and Fairness • What are the prospects, with or without treatment, for a return to normal life, and what physical, mental, and social deficits might the patient experience even if treatment succeeds? • On what grounds can anyone judge that some quality of life would be undesirable for a patient who cannot make or express such a judgment? • Are there biases that might prejudice the provider’s evaluation of the patient’s quality of life? • What ethical issues arise concerning improving or enhancing a patient’s quality of life? • Do quality-of-life assessments raise any questions regarding changes in treatment plans, such as forgoing life-sustaining treatment? • What are the plans and rationale to forgo life-sustaining treatment? • What is the legal and ethical status of suicide? • Are there professional, interprofessional, or business interests that might create conflicts of interest in the clinical treatment of patients? • Are there parties other than clinicians and patients, such as family members, who have an interest in clinical decisions? • What are the limits imposed on patient confidentiality by the legitimate interests of third parties? • Are there financial factors that create conflicts of interest in clinical decisions? • Are there problems of allocation of scarce health resources that might affect clinical decisions? • Are there religious issues that might affect clinical decisions? • What are the legal issues that might affect clinical decisions? • Are there considerations of clinical research and education that might affect clinical decisions? • Are there issues of public health and safety that affect clinical decisions? • Are there conflicts of interest within institutions or organizations (e.g., hospitals) that may affect clinical decisions and patient welfare? Modified from Jonsen AR, Siegler M, Winslade W Clinical Ethics 7th ed New York: McGraw-Hill; 2010 https://depts.washington.edu/bhdept/node/84 Analysis of Ethical Issues Once the ethical question has been clarified, the facts have been gathered, and the voices of the stakeholders heard, the next step is to begin an ethical analysis of the case Relevant institutional policies, healthcare regulations, and legal standards should be applied to the case In value-based ethical dilemmas, a variety of ethical theories may be applied to assist in determining the recommended course of action It is important to understand that there is no consensus on a predominant ethical theory All ethical theories have benefits and limitations They can and should be used in combination to help analyze the situation and assist in coming to the “best possible” set of recommendations The following is a limited example of ethical theories that may be applied to the analysis of ethical dilemmas 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.8 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 148 S E C T I O N I I I Pediatric Critical Care: Psychosocial and Societal 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.9 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 Communication of Recommendations Once an ethical analysis has been performed, the resulting recommendations must be communicated to the parties with a stake in the outcome This may include a note or notes in the patient’s chart and may involve discussions with the patient, family, and staff involved in the care of the patient Care should be taken to fully and transparently disclose the rationale behind the recommendations Stakeholders should have the opportunity for appeal, a process that may be facilitated by the ethics committee, a patient advocate, or some other institutional mechanism Importantly, the recommendations of ethics consultants and committees are just that—recommendations to the clinical team Support for the recommendations and ultimate decision-making may require hospital administration or even the courts in some cases Support Even after a decision has been made about how to proceed, patients, families, and staff often require additional support 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.10 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 Ethics of Patient and Surrogate Decision-Making Although the concept of patient autonomy seems obvious to all who practice medicine in this era, it was only a little over 60 years ago when the trend was for doctors to be more paternalistic and directive about medical decisions and for patients to accept these CHAPTER 17 Pediatric Critical Care Ethics decisions In the 1960s, a patient movement began to advocate for more patient autonomy in decision-making In that era, the predominant ethical cases surrounded the right to die A landmark case in 1975 involved Karen Ann Quinlan: her parents wanted the right to remove her ventilator, as she was in a persistent vegetative state The physicians refused, believing that they would be killing her and fearing homicide charges The beginning of the patient autonomy movement was focused on the right to refuse treatments Generally speaking, these trends toward autonomy and personal choice became embodied in the doctrine of informed consent Over the past several decades, the pendulum has continued to swing past “right to die” cases More recent trends in the patient autonomy movement surround the “right to live” and “right to demand treatments.” Patient Decision-Making A patient is given a tremendous amount of latitude to accept or refuse offered medical treatments if the patient is deemed competent for decision-making 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.11 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 149 Advance Directives Advance directives allow competent persons to document their values and medical decision-making preferences before becoming incapacitated patients.12 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.13 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.14 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 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.15 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 decisionmaking Shared or collaborative decision-making should combine the clinician’s expert knowledge and experience with the patient’s and family’s values and preferences.16,17 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) 150 S E C T I O N I I I Pediatric Critical Care: Psychosocial and Societal Surrogate Decision-Making In critical care medicine (adult and pediatric), it is not uncommon for patients to lack decision-making capacity In these situations, a surrogate decision-maker is required to participate in medical decision-making Surrogate decision-making falls into two categories: decision-making for patients who were previously recognized as competent under the law (e.g., a 22-year-old) and patients who have never been competent (e.g., a 4-month-old) Surrogates must adhere to different standards in each of these two categories 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 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, wellbeing, or life in jeopardy.18,19 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 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).20 Limits of Parental Demands There are also limits to a parent’s ability to demand medical therapies that are not recommended by the medical team Clinicians need not always accede to parental requests Healthcare professionals have an independent obligation to apply their knowledge and skills in a way that meets professional standards of care and benefits the patient For example, clinicians can refuse parental requests for medical therapies for their children that • BOX 17.1 Conditions for Justified State Interference with Parental Decision-Making • By refusing to consent, are the parents placing their child at significant risk of serious harm? • Is the harm imminent, requiring immediate action to prevent it? • Is the intervention that has been refused necessary to prevent the serious harm? • Is the intervention that has been refused of proven efficacy and therefore likely to prevent the harm? • Does the intervention that has been refused by the parents not also place the child at significant risk of serious harm, and its projected benefits outweigh its projected burdens significantly more favorably than the option chosen by the parents? • Would any other option prevent serious harm to the child in a way that is less intrusive to parental autonomy and more acceptable to the parents? • Can the state intervention be generalized to all other similar situations? • Would most parents agree that the state intervention was reasonable? From Diekema DS Parental refusals of medical treatment: the harm principle as threshold for state intervention Theor Med Bioeth 2004;25:243–264 ... https://depts.washington.edu/bhdept/node/84 Analysis of Ethical Issues Once the ethical question has been clarified, the facts have been gathered, and the voices of the stakeholders heard, the next step is to begin an ethical analysis... 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’... 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