Ethical Issues in the Care of Emerging Adults in Pediatric Intensive Care Units.

Abstract

Sydney, an 18-year-old woman with congenital heart disease (CHD), had infective endocarditis and was admitted in critical condition to the cardiac intensive care unit (CICU) at a pediatric medical center, where she has been followed since birth because of the CHD. As an infant she had a right ventricle–dominant atrioventricular (AV) canal defect, which was repaired when she was 4 months old. Persistent AV valve insufficiency resulted in the need to replace her left AV valve when she was 18 months of age. Sydney subsequently underwent 2 additional valve replacement procedures, the last of which was performed when she was 14 years old. Since that surgery, Sydney’s cardiac function has remained stable, and she is seen in the cardiology clinic for annual routine follow-ups. Two days before this most recent admission, however, Sydney was brought to the emergency department by emergency medical services; she had a persistent fever and worsening shortness of breath. An echocardiogram revealed diminished left ventricular function and a large vegetation on her left AV valve; blood cultures were positive for Streptococcus. She was admitted to the CICU to complete a course of antibiotics and then undergo surgical replacement of the infected valve.Since turning 18, Sydney has had a strained relationship with her mother, Rose, leading Sydney to move in with her grandparents. Sydney has had very little contact with her mother since she left home; Sydney’s health care team, however, knows Rose well, and she has been present and involved in Sydney’s care during each of her daughter’s prior hospitalizations. Throughout Sydney’s childhood, Rose chose to not burden Sydney with information about her medical condition because she wanted Sydney to have a normal life and not worry about her CHD. During this admission, while completing an assessment with Sydney, the nurse became concerned that Sydney is not well-informed about her medical history. Sydney was unable to answer questions about her medications, the timing of her most recent appointment with her cardiologist, and other important information. When asked whether she has an advance directive (AD) such as a health care proxy, Sydney said no. Sydney told the nurse, “I am young, I don’t need one, and surgery isn’t a big deal. I’ll be fine.” The nurse expressed concern to the health care team about Sydney’s lack of knowledge and understanding about her congenital heart defect and her current clinical status, and her unwillingness to designate a health care agent. Although the nurse remembered to discuss with Sydney designating a health care agent, she forgot to discuss visitation, so a list of approved visitors was never placed in Sydney’s chart. Sydney mentioned in passing her estrangement from her mother, but the nurse did not communicate this to the rest of Sydney’s health care team; the electronic medical record lacks a defined section in which to document this information.Once the surgical procedure was scheduled, Sydney signed her own consent forms for the procedure and anesthesia. This hospitalization was the first time since Sydney reached the state’s legal age of majority (ie, the age at which an individual is granted full legal control over personal decisions and actions) that she has consented to health care procedures on her own.1 The health care team did not revisit Sydney’s health care proxy and visitation preferences before the procedure. Sydney’s grandparents visited her in the CICU during that time, but Rose did not.After the operation, hemodynamic instability required prolonged mechanical ventilation, complicating Sydney’s postoperative course. Rose arrived at the CICU to visit Sydney. Rose knew the CICU staff from her daughter’s previous surgeries, and the staff invited her to come into the unit and visit her daughter. In Sydney’s hospital room, Rose asked for an update from her daughter’s clinical team. Presuming Rose to be Sydney’s health care agent, the clinical team shared Sydney’s medical information. When Sydney woke up, she was upset that her mother was at the bedside and that Rose had been given medical information. Rose stated, “You are my daughter. I have a right to get information and be here whenever I want.”During the late 1980s and early 1990s, survival began to improve for infants born with complex cardiac lesions, and they would live beyond infancy. Advances in medical management, surgical techniques, and technology now allow children with CHD to reach adulthood.2 In fact, adults with CHD currently outnumber children with CHD.3 Individuals who have recently transitioned to adulthood are often called emerging adults. Emerging adults describe themselves as feeling “in between,” free from the dependency of childhood and adolescence and starting to feel responsible for themselves, yet still tied to their parents or family and in a stage of deciding who they are and what they want in life.4 Emerging adults with CHD have a unique set of health care needs that health care providers must meet in order to optimize the person’s overall health and well-being and simultaneously support their developing independence.At the recommendation of the American College of Cardiology and the American Heart Association, some medical centers, whether they treat pediatric or adult patients, have created collaborative transitional care programs that equip emerging adult patients with CHD and their families with information and resources to ensure that optimal care is provided regardless of the setting in which they receive care (ie, pediatric vs adult).5 In addition, cardiologists are now able to become board certified in adult CHD, making possible tailored and comprehensive care for emerging adult patients with CHD. Throughout the United States, however, the number of medical centers that offer transitional care programs or have providers who are well versed in caring for the growing population of emerging adults with CHD remains relatively low.6 As a result, many emerging adults with CHD continue to be followed in pediatric settings (ie, pediatric intensive care units, pediatric medical floors, or both) by pediatric cardiologists and pediatric cardiothoracic surgeons, instead of transitioning to an adult care setting.7,8 Although this practice promotes continuity of care, ethical issues may result, particularly when an emerging adult is admitted to a pediatric setting for the first time after reaching the age of legal majority, as occurred in Sydney’s case.Nurses spend a significant amount of time interacting with both patients and their family members, and when emerging adults with CHD are hospitalized in pediatric intensive care units, nurses thus may be the first to recognize the specific ethical challenges unique to this population.In this column, we discuss the ethical issues that arose in Sydney’s case to bring attention to emerging adult patients with CHD who receive ongoing care in a pediatric setting. We specifically discuss the transition from being a dependent minor to an emerging adult and autonomous decision-maker, challenges to ensuring emerging adults’ capacity to provide informed consent, barriers to emerging adults’ engagement in advance care planning (ACP), and protecting the privacy of emerging adult patients in pediatric inpatient settings. We analyze the aforementioned ethical challenges to provide practical guidance for critical care nurses who aim to promote ethical health care practices for this patient population.The first ethical issue that we notice in the case of Sydney is her transition from being a dependent and giving assent to becoming an independent, autonomous decision-maker. The American Academy of Pediatrics encourages health care providers to include children and adolescents younger than the age of legal majority in the medical decision-making process, when appropriate, by attaining their assent for procedures or care.9 When a pediatric patient reaches the age of legal majority—18 years in most states—they are deemed to have the legal capacity to make their own medical decisions. With autonomous decision-making comes a shift in ethical focus, from honoring the right of parents or surrogates to make medical decisions for their child to respecting emerging adult patients’ personal values and preferences related to decision-making. This transition occurs for all children who age into adulthood, but for patients like Sydney, who have a chronic illness such as CHD and require more frequent interactions with the health care system, this transition may be sudden and have higher stakes because of the patient’s complex health history.Until a pediatric patient with a chronic health condition becomes an emerging adult, parents (or surrogates) act as caregivers, care coordinators, and advocates for their child or adolescent, all while navigating the complex health care system.10 Most children with CHD, like Sydney, will spend some time as an inpatient for various medical and surgical interventions. Thus parents often have to make difficult medical decisions to achieve the goal of better health or longer life—or both—for their child. The transition of a child into adult-hood is therefore a time of change not only for the emerging adult but also for their parents as their child begins to direct their own medical care. Parents may feel uncertain about the emerging adult’s readiness to make autonomous decisions, and their child may not want them to be involved in their medical care in any capacity, as was the case with Sydney.Emerging adults’ transition to autonomous decision-making is not always seamless. For example, an emerging adult may be asked to give consent for medical interventions and high-risk surgical procedures they do not fully understand because parents or surrogates previously made such decisions on their behalf. As was the case with Sydney, some parents do not wish to burden their child who has a chronic illness with information about the condition.11 Although often well intentioned, this practice can make the transition to autonomous decision-making more difficult for the emerging adult. Parents or surrogates have opportunities to gather information about their child’s chronic condition throughout a number of years and are able to learn and process information as new health issues emerge; however, children who emerge into adulthood and have not previously been involved in the intricacies of their health care are immediately expected to make their own medical decisions without adequate knowledge of their health history or the learning that comes with making various health-related decisions over time. Thus, these emerging adults must adapt to their new decision-making role while simultaneously catching up on their medical and surgical history and information about their illness. Furthermore, some, like Sydney, have limited time between reaching the age of legal majority and requiring acute health care interventions, which potentially compromises their ability to provide true informed consent.Throughout their time in an ICU, patients (or, when patients lack decision-making capacity, their surrogates) are asked to authorize medical interventions, which requires informed consent. Informed consent, however, is not simply a matter of selecting among intervention options. It requires a dialogue between care providers and the patient, during which they discuss pertinent information about treatment options, risks, and benefits so the patient can decide how to proceed with their care. In addition, informed consent must be given voluntarily by an individual who is competent to make their own medical decisions and convey their wishes after understanding the information and recommendations presented.12Ideally, emerging adults are able to come quickly to an understanding about their treatment options and condition so that they can make prompt, informed, and autonomous decisions. Unfortunately, this situation may not always occur. Sometimes emerging adults deteriorate before they are able to decide what treatment they want to receive. In cases like Sydney’s, where a transition to autonomous decision-making happens suddenly, the emerging adult patient may lack the ability to understand and process information necessary for timely decision-making. Factors such as illness intensity, developmental maturity, and acute stress, in addition to the emerging adult’s potential lack of knowledge about their medical and surgical histories, can make it difficult for them to give informed consent.12 Patients with CHD frequently experience acute changes in their clinical condition—infection, heart failure, or other chronic issues associated with CHD—that require immediate intensive care intervention.13 Also, emerging adults may be resistant to information, as Sydney was, because they lack an appreciation for the severity of their condition—yet another scenario that results in a lack of understanding and therefore inability to give informed consent. Any of these situations has the potential to result in negative health consequences for the emerging adult.Disclosure and understanding of sufficient information is important, but they compose just one element of informed consent. A second element is capacity to make a decision.12 As with other adult patients, emerging adult patients’ capacity for making decisions includes understanding the medical information presented, reasoning through the various treatment options, being able to communicate a choice, and understanding the consequences of that choice.14 Capacity includes understanding how treatments will impact the trajectory of one’s chronic health condition and quality of life. Sydney does not seem to appreciate the fragility of her clinical status nor the risks associated with a valve replacement procedure. Although she is able to communicate a choice to her health care team, she does not under-stand the consequences of the choice that she is making; for this reason it is difficult for the medical team to say that she meets the criteria for capably making a decision and thus is giving informed consent.A third element of informed consent is one’s voluntariness in acting. An emerging adult who is admitted into the ICU, like Sydney, must make decisions free from the undue influence of others (eg, parents, friends, health care team members).12 The emerging adults’ goals of care for themselves may be different from those their parents or even their health care team has for them. Sydney seems to sign the informed consent document voluntarily, but her care team should take care to ensure that she does not feel coerced by them to consent to a procedure that she does not understand or does not want. In addition, her family should not try to unduly influence this choice.As witnesses to the informed consent process, nurses are responsible for recognizing and alerting providers if they are concerned that the emerging adult seems to be inadequately informed.15 Nurses are often the first to converse with patients when they are admitted to the ICU, and they subsequently spend long periods of time with the patient at the bedside. Thus they may best be able to gauge the patient’s overall understanding of both their medical history and their current health status. Sydney’s nurse was able to recognize Sydney’s lack of both knowledge and an understanding about the potential consequences that could result from the proposed intervention (AV valve replacement).Lack of understanding is not unique to emerging adults; however, as this is the first time Sydney is being asked to make a decision for herself, lack of understanding is a particularly unique challenge.9 The challenge for Sydney’s nurse and other health care providers, then, is to find ways to educate Sydney to ensure adequate understanding so that she can make an informed health care decision. Studies note that emerging adults with CHD require individualized education tailored to their situation and delivered via 2-way communication, and that providers must show respect.16 One approach Sydney’s nurse could take is to begin to educate Sydney about her diagnosis and treatments and to discuss the importance of expert surveillance beyond this acute event, which could encourage ongoing education by other specialists and providers.8 Sydney’s nurse could use a multimedia approach (eg, pamphlets, digital media explaining the cardiac disease or treatment), which may also be helpful because it can increase a patient’s knowledge of a disease and its treatment and decrease anxiety, thereby promoting true informed consent from patients with cardiac malformations.17Many factors can limit a nurse’s ability to ensure that patients like Sydney are adequately informed. Providing education to emerging adult patients who are encountering health care for the first time since turning the age of legal majority can be time consuming, especially when the nurse is also caring for other patients. If the emerging adult patient requires more focused care than other patients, a justice issue could arise—meaning that the care needs of the emerging adult patient limit other pediatric patients’ access to nursing care. Working with nurse managers or other administrators may be helpful in order to ensure needs are met for both emerging adult patients with CHD and other patients. In addition, nurses may feel uncertain about the capacity of their emerging adult patient to make an informed decision. In these cases, nurses may benefit from seeking referral from other medical providers such as psychiatrists, who often specialize in evaluating capacity. Finally, nurses who question an emerging adult patient’s capacity or want to educate their patient may feel pressured by other providers to verify that consent is informed even if they do not believe it to be so. In these cases, nurses must recognize that they are not required to serve as a legal witness to consent that they do not believe is fully informed, but they must notify the health care team—as Sydney’s nurse did—to support the patient in ways that will promote their understanding and their ability to give informed consent, or attempt to find other ways to promote patient understanding.15Sydney did not wish to participate in ACP discussions, which further complicated her case. Advanced care planning is important for Sydney because complications associated with infective endocarditis include heart failure, stroke, pulmonary embolism, and the potential need for resuscitative efforts during both surgery and the immediate postoperative period.18 Emerging adults can be hesitant or unwilling to participate in ACP, given the seeming irrelevance of such discussions to their situation19; however, it is especially important to engage emerging adults with chronic illnesses in such conversations so they can begin thinking about the event that their condition changes significantly or they need life-sustaining treatment.20Screening for the presence of an AD such as a health care proxy or documentation outlining preferences for treatment should the emerging adult be unable to direct their own care (ie, a living will) and discussing the importance of ADs are often a nurse’s responsibility. Nurses must be knowledgeable about the different types of ADs, know the limitations of each, and be able to engage in informed discussions about ADs with their patients.15 Pediatric nurses often feel uncomfortable or ill-equipped to promote ACP among their emerging adult patients because AD documents are infrequently used in some pediatric settings.21 To help nurses caring for these patients become more confident in having discussions about ACP, they must have adequate access to information about what ACP is, guidance on how to start conversations with patients about ACP, and what to do when patients decline to participate in ACP. For example, simply asking a patient whom they would like to select as their health care agent is relatively uncomplicated, but nurses need to know what to do should the patient be unwilling to select someone. Furthermore, because they involve detailing patient preferences should the patient become unable to direct their own care, discussions about living wills are more complex and require greater development of provider competence, especially if a patient is resistant to such discussions. Advanced care providers or physicians traditionally have such discussions with patients, but other clinical nurses may be involved, like Sydney’s nurse was. Sydney’s nurse recognized the importance of ACP, specifically Sydney’s designation of a health care agent, and was concerned when Sydney refused to engage in this discussion. Sydney’s nurse appropriately notified Sydney’s health care team, which is an action that could prompt interdisciplinary collaboration to address the nurse’s concern for Sydney’s ACP needs. Pediatric nurses may be more comfortable inquiring about who a patient would like to designate as their health care agent than having a conversation about a patient’s treatment preferences. Because pediatric nurses may not regularly use these skills, simulations with peers or actors can be a valuable way for nurses to learn and maintain the skills essential to engaging in these difficult and sometimes uncomfortable conversations.22Upon admission, patients are burdened with countless questions and new information, which can be overwhelming. Rather than attempting to persuade Sydney to consider ACP at admission, nurses could speak with her at another time before surgery, which Sydney could help choose. Ideally, ACP should be addressed during the preoperative process; however, emerging adults admitted directly into the ICU before a procedure may not go through the traditional preoperative process. Therefore, nurses must be aware of the need for preoperative discussions of ACP and help ensure they occur. Unfortunately, ACP was never revisited with Sydney before the operation. For emerging adults who are reluctant to discuss ACP, one approach is for the nurse to ask the patient whom they might feel most comfortable speaking with about ACP. A trusted child-life specialist, a cardiologist, another nurse, or a chaplain with whom the patient is familiar may be able to approach the conversations in ways that make the patient more willing to consider ACP preferences that would be enacted should their condition deteriorate.When patients like Sydney are admitted to pediatric hospitals as emerging adults, the role they prefer for their parents is sometimes not addressed. One reason may be because family-centered care that supports parents’ relatively unrestricted access to their child and their child’s medical information is emphasized in the pediatric inpatient setting.23 In the case of emerging adult patients, the health care team might assume that the emerging adult’s parent is the designated health care agent or is still involved in medical decision-making, as Sydney’s care team did with her mother, Rose. As a result, when an emerging adult is admitted into the pediatric setting, typical patterns of educating and sharing information with parents at the beside can result in information being given to parents without permission from the emerging adult patient. This sharing breaches the patient’s privacy—yet another ethical issue in Sydney’s case.To protect the emerging adult patient’s privacy and to support their developing autonomy, nurses must be acutely aware of the age of their patients and remember that emerging adults being cared for in a pediatric setting have legal capacity to decide who receives information about their care. Once nurses realize a patient is the age of legal majority or older, they should make an effort to address the patient’s visitation preferences and identify who the patient authorizes to receive information about their treatment and condition.Honoring the emerging adult’s wishes occasionally creates tension between the health care team and the patient’s parents, particularly when the patient wants to limit parental involvement, as Sydney did. Because nurses interact most frequently with patients and their families, they are often the gatekeepers who must enforce a change in parents’ involvement. For instance, nurses are usually tasked with asking a parent to leave the bedside if the emerging adult does not want them to visit, or telling parents that providers are unable to share information with them. The Health Insurance Portability and Accountability Act (HIPAA) protects sensitive health information from being shared without consent from the patient or, in the case of a child, from their parent or guardian. When an adolescent becomes an adult, HIPAA affords the emerging adult the right to determine for themselves whom they want to have access to their health infor-mation.24 When an emerging adult elects not to have information released to their parents, parents may become frustrated when the health care team refuses to provide information about their child. Ideally, nurses can help prepare parents for this possibility by educating them when their child is an inpatient or at routine clinic visits before the child reaches the age of majority.25 Another approach is for nurses to apply methods similar to those used when providing outpatient education and have discussions with parents early and frequently during the emerging adults’ admission to prepare them for potential changes to information-sharing and decision-making processes.16 During these conversations, nurses can give parents and guardians the opportunity to express any concerns they have, and they can provide psychosocial support to parents while also promoting the patient’s decision-making rights. These conversations also provide an opportunity for the nurse to inform parents of any resources available to the emerging adult to ensure that they are supported and have access to the information they need to make decisions.The health care team caring for Sydney during her stay in the CICU was confronted with a wide range of ethical issues that can arise when emerging adults are cared for in pediatric inpatient settings. One of these challenges involves the transition of patients like Sydney from being an adolescent who is dependent on parents to an adult who is expected to make medical decisions autonomously. This transition often creates ethical issues for both the patient and the family, who are sometimes ill-prepared for or unwilling to accept this transition. Another ethical issue that often arises for this patient population relates to the assumption that, upon turning 18, emerging adults have the ability to provide true informed consent. This assumption can lead to the expectation that emerging adults can make their own medical decisions, even when they are not prepared to do so. Third, health care providers may encounter situations in which they are caring for emerging adults who do not have an AD. Unwillingness to have, or discomfort in having, conversations related to ACP can lead the medical team to approach undesignated decision-makers, resulting in a breach of patient privacy.Although these ethical issues may at times seem insurmountable, nurses play a crucial role in recognizing these ethical issues and implementing effective solutions. Because emerging adults with complex, chronic conditions, like Sydney, are still a relatively new patient population, medical centers—especially pediatric medical centers—may lack institutional policies detailing their care. Nurses can advocate for this population by helping to create policy guidelines that promote care that is mindful of the ethical issues we have raised. For example, policy guidelines on ACP for, visitation of, and sharing of information with parents of emerging adults could offer nurses a roadmap in their caregiving and help them avoid some of the ethical dilemmas that arose throughout Sydney’s case. Implementation of such guidelines could include the nurse simply stating each patient’s age at the beginning of interdisciplinary rounds and naming the family members with whom each patient has agreed to share medical information. Such consistent processes within health care facilities are crucial for maintaining interdisciplinary collaboration and effective communication when caring for this patient population. If these guidelines are ineffective and providers become concerned about unresolved patient care issues, institutional ethics committees are a resource that providers can access to discuss and help resolve ethical issues specific to a particular case. Ethics committees can also be involved in efforts to create organizational structures that promote the well-being of emerging adult patients.