Abstract The chapter presents updates on existing knowledge of procedural applications of ultrasound, including in vascular access and other ultrasound guided procedures A wide array of diagnostic app[.]
e4 Abstract: The chapter presents updates on existing knowledge of procedural applications of ultrasound, including in vascular access and other ultrasound-guided procedures A wide array of diagnostic applications are covered as well, including pulmonary and airway, abdominal, cardiac assessment, and neurologic applications Importantly, the chapter also addresses the evolving practice of ultrasound in the pediatric intensive care unit Key words: echocardiography, procedures, vascular access, umbilical access, trauma, neurosonology SECTION III Pediatric Critical Care: Psychosocial and Societal 16 Patient- and Family-Centered Care in the Pediatric Intensive Care Unit 136 17 Pediatric Critical Care Ethics 144 18 Ethical Issues Around Death and Dying 154 19 Palliative Care in the Pediatric Intensive Care Unit 158 20 Organ Donation Process and Management of the Organ Donor 163 21 Long-Term Outcomes Following Critical Illness in Children 175 22 Burnout and Resiliency 183 135 16 Patient- and Family-Centered Care in the Pediatric Intensive Care Unit JENNY KINGSLEY AND JONNA D CLARK • “Intensive care unit Wow, those are scary words for parents to hear! We viewed the intensive care unit as a place people went when their medical situation was desperate or where they were likely to die.”2 Many parents share this parent’s voice when faced with the hospitalization of a critically ill child.2 These families not only face the extreme crisis of having a sick child whose life may be threatened, but they are also forced into a foreign environment and culture that can be intimidating, overwhelming, and perceived as unwelcoming Families in the intensive care unit (ICU) are at one of the worst moments in their lives and suffer from an extreme level of stress, in which they may feel powerless and out of control This level of stress creates short- and long-term consequences, as many parents and children face severe emotional distress, which may result in posttraumatic stress disorder (PTSD).3–7 To mitigate the severity of this stressful response and optimize the quality of medical care provided, patient- and family-centered care (PFCC) is a philosophy that highlights the importance of including the patient, when possible, and family in the provision of healthcare The American Academy of Pediatrics (AAP) acknowledges that the “family is the primary source of a child’s strength and support” and defines PFCC as “an innovative approach to the planning, delivery, and evaluation of healthcare that is grounded in a mutually beneficial partnership among patients, families, and providers.”1 PFCC can be incorporated across the 136 Developing a partnership built on mutual respect among healthcare providers, patients, and families • Empowering patients and families to participate in shared medical decision-making Incorporating PFCC into practice improves patient and family satisfaction, reduces stress and anxiety, fosters the parent-child relationship, and ultimately increases the quality, efficacy, efficiency, and safety of healthcare delivered Overcoming real and perceived barriers to incorporating PFCC into practice requires an explicit, collaborative, and transparent approach involving all stakeholders to identify creative solutions • Patient- and family-centered care (PFCC) uses an “innovative approach to the planning, delivery, and evaluation of healthcare that is grounded in a mutually beneficial partnership among patients, families, and providers.”1 Fundamental principles of PFCC include: • Honoring differences and respecting each individual patient and family • Maintaining flexibility in practice, policies, and procedures to fully accommodate the needs of patients and families • Sharing honest and consistent information using collaborative communication • Using a transdisciplinary approach to provide optimal support for the family unit • • PEARLS • spectrum of healthcare, from home to outpatient to inpatient, and is essential for the provision of high-quality care in the ICU Ongoing research in this area demonstrates that parents’ participation in the care of their hospitalized child directly benefits the child by reducing anxiety, improving cooperation, improving activity level, and reducing the length of stay.8,9 Additional data reveal more effective utilization of healthcare resources, reduced healthcare costs, and improved provider satisfaction.1 Definition of “Family” In the delivery of PFCC, patients and families, rather than healthcare providers or the legal system, define their families.10,11 Since family structures are heterogeneous and evolve over time within a variety of cultural contexts,10,11 the term “family” requires a broad definition, referring to “two or more persons who are related in any way—biologically, legally, or emotionally.”10 A wide variety of family structures exists, including blended families, singleparent households, adoptive homes, same-sex couples, and transgenerational models where extended family members—such as grandparents, aunts, uncles, or siblings—serve as the primary caretakers.7,10,11 While healthcare providers and institutions have a legal obligation to respect the law regarding surrogate decisionmaking for minors, they also have an ethical and professional obligation to respect the broader definition of family in practice, CHAPTER 16 Patient- and Family-Centered Care in the Pediatric Intensive Care Unit acknowledging that the family is the primary source of strength and support for the child.1,8 Historical Evolution of Patient- and FamilyCentered Care The conceptual aspects of PFCC can be dated back to as early as the 1950s, when studies demonstrated a negative impact of maternal-child separation, leading to a shift toward encouraging parent participation in the care of the hospitalized child.1,8,11,12 In 1983 the Committee on Hospital Care and Pediatric Section of the Society of Critical Care Medicine published “Guidelines for Pediatric Intensive Care Units” highlighting that “Parents should be allowed to stay with the critically ill child as much as possible.”13 These guidelines explained that the presence of parents may lead to faster recovery, stating, “The familiar face and voice of a parent may reach a child who appears comatose but is beginning to respond to stimuli.”13 In the following decades, there was extensive research in the value and benefit of PFCC in healthcare communities Several national organizations were founded, including Family Voices, an organization that advocates for family-centered, communitybased services for children with special needs, and the Institute for Patient- and Family-Centered Care, an organization that helps foster partnerships between healthcare professionals, patients, and families to advance family-centered care in healthcare settings.1 More recently, several national organizations, including the Institute of Medicine (2001), Maternal and Child Health Bureau (2005), American College of Critical Care Medicine Task Force (2007), and American Academy of Pediatrics (2012) have furthered this approach by developing guidelines and endorsing that PFCC is essential to the provision of high-quality care.1,14 Honoring and embracing differences Fostering partnership among healthcare providers, patients, and families 137 Fundamental Needs of Patients and Families in the Intensive Care Unit Based on the complexity and intensity of the pediatric intensive care unit (PICU), families’ needs are high Although specific needs of the individual patient and family are important to consider, there is consensus that most families share similar needs, including (1) honest, accurate, and up-to-date information; (2) close proximity to the patient; (3) timely notification of any changes in the patient’s condition; (4) assurance that the healthcare team cares about the child and that the patient is receiving excellent care; (5) access to resources to meet basic physiologic needs; and (6) feeling that there is hope.7,15–18 Research demonstrates that provider perceptions often underestimate the needs of families Furthermore, when families’ needs are known, they are not adequately addressed in practice Unfortunately, when families’ needs are not met, there is a negative impact on satisfaction of care in addition to a higher amount of stress and anxiety.6,7,18 Core Principles of Patient- and FamilyCentered Care1,12 The practice of PFCC, in which patients and families are treated as integral partners with the healthcare team, is now recognized as the standard of care in pediatric critical care medicine.1,12 Borrowing from the framework established by the AAP, the following discussion highlights each of the fundamental principles of PFCC within the context of the PICU (Fig 16.1).11 Maintaining flexibility in provision of healthcare Family presence and engagement Patient- and family-centered care Cultural humility Transdisciplinary care for the whole child and family Collaborative and empathetic communication Shared medical decision-making • Fig 16.1 Core principles of patient- and family-centered care 138 S E C T I O N I I I Pediatric Critical Care: Psychosocial and Societal Honoring Differences and Respecting Each Child and Family One of the most fundamental aspects of developing a “mutually beneficial partnership” with patients and their families requires a relationship of mutual respect, in which differences among stakeholders are honored.1 The AAP states, “Listen to and respect. . each child and family’s innate strengths and cultural values Honor racial, ethnic, cultural, and socioeconomic background and patient and family experiences.”1 Patients and families demonstrate a wide range of responses within their own social construct, using a variety of coping mechanisms to overcome the distressing state Recognizing that one individual cannot be an expert on all cultures, faiths, ethnicities, spirituality, or religious practices, practicing cultural humility and acknowledging biases and assumptions are crucial.19 In the ICU, where major medical decisions regarding life, death, and quality of life are made quickly, differences in beliefs and value systems may be accentuated among healthcare providers and families Taking the time to listen to different perspectives and understand how knowledge, past experiences, and value systems impact decisions is essential In the majority of situations, families and healthcare providers desire what is in the best interest of the child Acknowledging that values and belief systems affect perceptions of what actions are in the best interest of the child can be helpful when navigating challenging circumstances For example, parents of a beloved child who suffers from a life-threatening illness with a poor prognosis may choose to prolong life as long as possible, treasuring and valuing each day they have with their child alive, while healthcare providers may view prolonging life as merely prolonging suffering Developing a collaborative relationship ensures that differences in opinion are respected For patients and families whose English fluency is minimal, fundamental communication and language barriers exist In this case, developing a partnership built on trust and understanding may be especially difficult The use of in-person language interpreters and cultural navigators, who serve as healthcare guides for the family and cultural guides for the healthcare providers, is essential to building this relationship Optimizing additional means for communication with non-English-speaking families, such as video interpreter service, can also be beneficial Maintaining Flexibility in Practice and Procedures to Deliver Healthcare within the Context of the Family The PICU is a highly complex environment that requires a systematic approach to policies and protocols to ensure the delivery of efficient, effective, and safe healthcare When developing these policies and protocols, it is essential to recognize how these systems and processes impact patients and families Hospital systems and organizations need to “ensure flexibility in organizational policies, procedures, and provider practices so services can be tailored to the needs, beliefs, and cultural values of each child and family.”1 Practices and procedures should “facilitate choice. . about approaches to care.”1 Historically, hospitals were designed as sterile environments that restricted visitation, with fear of spread of infection and the breach of confidentiality.11 However, with the evolution of PFCC, many healthcare organizations and institutions are making the effort to better accommodate patients’ and families’ needs by including them in the planning and delivery of care When a child is hospitalized in the ICU, the needs of the family are extremely high.7,17,18 Addressing many of these needs can be approached considering the following categories: (1) visitation policies and physical accommodations for families, (2) family-centered rounds, (3) family presence during cardiopulmonary resuscitation and other invasive procedures, and (4) collaborative communication.14,20 When assessing the potential benefits and harms of policies, procedures, and delivery of healthcare in these areas, open dialogue and transparency regarding the needs of all stakeholders are essential, allowing for creative solutions when conflicts arise Geography of the Intensive Care Unit In planning and designing an ICU the geography of the unit needs to accommodate both healthcare providers and patients and families For example, a unit that allows for effective and efficient management of multiple critically ill patients is essential for healthcare providers, while patients and families need privacy, space in close proximity to their child, and access to an area where they may find respite from the intensive environment to build strength and repose.13,21 Admission Process and Visiting Hours Parents and family members should be treated as partners rather than visitors within the ICU They should feel welcomed into the foreign environment through the use of a variety of communication styles, both spoken and written, and remain well informed of processes and procedures In general, visiting hours for parents and primary caretakers should be nonrestrictive in order to optimize parent and child bonding.14 However, maintaining flexibility in these visiting policies is important as there may be unique circumstances when limiting visitation by family members is necessary to create a calm and healing environment for the child Creating a “Personalized” Room Patients and families should have the liberty to create an environment that mimics home, with decorations, photographs, favorite toys, and blankets, as long as the modifications not place the child at risk and not interfere with the provision of medical care.13,14 Although the ICU is a place of work for the healthcare providers, it is the bedroom for a critically ill child and potentially may be the last place a dying child spends time.22 Creating a home environment is not only beneficial to the child but also helps the healthcare team gain insight into who the child is as a person, enabling healthcare providers to address the needs of the child more appropriately Sibling Participation Siblings of critically ill children are severely affected and need to be supported according to the values of the family.7,23 Siblings need maintenance of a familiar lifestyle, including family cohesion, distraction from the immediate crisis, hospital visitation, and developmentally appropriate information.7 The transdisciplinary team, including child life specialists and social workers, can help educate parents and caregivers about anticipated questions and emotional responses that may occur, and provide appropriate referral services and support systems.23 Parental Presence During Cardiopulmonary Resuscitation and Invasive Procedures Numerous professional organizations, including the American Heart Association and the American College of Critical Care ... Family-Centered Care in the Pediatric Intensive Care Unit 136 17 Pediatric Critical Care Ethics 144 18 Ethical Issues Around Death and Dying 154 19 Palliative Care in the Pediatric Intensive Care... when their medical situation was desperate or where they were likely to die.”2 Many parents share this parent’s voice when faced with the hospitalization of a critically ill child.2 These families... and suffer from an extreme level of stress, in which they may feel powerless and out of control This level of stress creates short- and long-term consequences, as many parents and children face