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.”
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
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.
“ 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.”
Many parents share this parent’s voice when faced with the hospitalization of a critically ill child. 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).
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.” PFCC can be incorporated across the 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. , Additional data reveal more effective utilization of healthcare resources, reduced healthcare costs, and improved provider satisfaction.
Definition of “family”
In the delivery of PFCC, patients and families, rather than healthcare providers or the legal system, define their families. , Since family structures are heterogeneous and evolve over time within a variety of cultural contexts, , the term “family” requires a broad definition, referring to “two or more persons who are related in any way—biologically, legally, or emotionally.” A wide variety of family structures exists, including blended families, single-parent 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. , , While healthcare providers and institutions have a legal obligation to respect the law regarding surrogate decision-making for minors, they also have an ethical and professional obligation to respect the broader definition of family in practice, acknowledging that the family is the primary source of strength and support for the child. ,
Historical evolution of patient- and family-centered 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. , , , 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.” 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.” In the following 2 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, community-based 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. 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. ,
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. , 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. , ,
Core principles of patient- and family-centered care ,
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. , 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 ).
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. 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.” 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.
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.” Practices and procedures should “facilitate choice. . . about approaches to care.”
Historically, hospitals were designed as sterile environments that restricted visitation, with fear of spread of infection and the breach of confidentiality. 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. , , 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. , 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. ,
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. 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 do not place the child at risk and do not interfere with the provision of medical care. , 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. 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.
Siblings of critically ill children are severely affected and need to be supported according to the values of the family. , Siblings need maintenance of a familiar lifestyle, including family cohesion, distraction from the immediate crisis, hospital visitation, and developmentally appropriate information. 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.
Parental presence during cardiopulmonary resuscitation and invasive procedures
Numerous professional organizations, including the American Heart Association and the American College of Critical Care Medicine, endorse offering families the option to remain in close proximity to their loved ones during cardiopulmonary resuscitation and invasive procedures. , Allowing family presence has direct benefits for parents and caregivers, including improved satisfaction, better understanding, reduced anxiety, better coping, more emotional stability, and improved adjustment to a child’s death. Despite these potential benefits, the practice remains controversial. Clinicians raise concerns that parental presence may increase the risk for litigation and may impact technical performance, clinical decision-making, and the ability to teach. , In a large single-center study, using formal practice guidelines and interprofessional education to prepare clinicians for parental presence, “few clinicians reported that parent presence affected their technical performance (4%), therapeutic decision-making (5%), or ability to teach (9%).” Moreover, recent data suggest that family presence during intubations does not affect the rate of first attempt success, adverse events, or self-reported team stress level, suggesting that family presence during invasive procedures can be safely implemented. By developing protocols, institutional policies, education, and dedicated staff resources to allow parental choice and provide support for parental presence during invasive procedures and cardiopulmonary resuscitation, these concerns can be minimized.
Transition points and follow-up care, including bereavement
Once adjusted to the ICU, many families ultimately appreciate the high level of physician supervision and nursing presence, making transitions to the acute care floor potentially difficult. Supporting families through these transitions during the course of an illness is necessary. For families who spend an especially long period of time in the ICU, providing families with realistic expectations and allowing families to visit the acute care floor prior to transfer can be beneficial. In addition to providing additional support for transitions between different geographic locations in the hospital, developing a framework to help families transition through different approaches to care, from curative to life-prolonging to comfort care, is important. Furthermore, using a systematic approach to follow-up with families following the death of child, with condolence letters and formal follow-up meetings, is also necessary to reduce the perception of abandonment and support the bereavement process. ,
Sharing information using collaborative communication
High-quality communication with families is essential in the ICU, where medical information is complex and detailed, high-stakes decisions are required, and multiple teams of healthcare providers are involved. While there is a spectrum of preferred decision-making roles of families, ranging from an independent and autonomous approach to delegating decisions to clinicians, most families need to be well informed. Optimizing communication with families reinforces the development of a partnership with families, acknowledging the important role of parents and caregivers and their unique knowledge of their child. The AAP recommends “sharing complete, honest, and unbiased information with patients and their families on an ongoing basis so that they may effectively participate in care and decision making.”
Over the past 2 decades, there has been extensive research in optimizing communication between healthcare providers, particularly in the ICU and surrounding end-of-life care decision-making. , , In the ICU, information is shared using three different verbal models, including individual updates at the bedside, family-centered rounds, and formal care conferences. Written information may also be provided. Often a combination of all of these approaches is necessary to optimize communication with patients and families. Depending on the educational, social, and cultural backgrounds of patients and families, in addition to different provider styles, a variety of approaches to communication may be used.
Elements of high-quality communication
Sharing medical information is complex and requires a high level of skill among healthcare providers. Parents and providers identify a number of barriers to communication in the PICU, including communication breakdown related to care coordination and provider hand-offs, families feeling undervalued or unheard as the experts on their children, and the inadequacy of family-centered morning rounds. While using a variety of means to communicate with patients and families is necessary (as detailed earlier), parents cite specific elements of communication as very important. , High-quality elements of communication include “comprehensive and complete information; clarity of information with the use of clear language; ease of access to caregivers and their explanations through the course of care; pacing of information, soliciting of parents’ emotional responses and addressing their questions; consistency of information; honesty, lack of false hope, empathy as demonstrated by verbal and nonverbal, and affective communication; summary statements and next steps.” Other important components of high-quality communication include using open-ended questions, soliciting goals, and increasing time families spend speaking. Recent research has found that these elements of high-quality patient- and family-centered communication are associated with higher parent satisfaction when incorporated into family conferences in the PICU.
A useful tool to help clinicians practice high-quality communication is the VALUE mnemonic, in which family statements are valued , family emotions are acknowledged , the family is listened to, the patient is understood as a person, and family questions are elicited . This mnemonic emphasizes the importance of using collaborative communication, or a form of communication in which interpersonal communication and the relationship between the parties are “inexorably entwined.” Collaborative communication can accomplish at least five important tasks in PFCC, including (1) establishing a set of goals that guides collaborative efforts; (2) exhibiting mutual respect and compassion for each other; (3) developing sufficient understanding of differing perspectives; (4) ensuring maximum clarity and correctness of what is communicated; and (5) managing intrapersonal and interpersonal processes that affect how information is sent, received, and processed. When used consistently in family conferences, evidence suggests that the VALUE mnemonic is associated with lower family symptoms of anxiety, PTSD, and depression. Particularly in the setting of the ICU, optimizing these elements of high-quality communication may be difficult owing to the number of healthcare team providers involved and the short time frame in which news must be delivered. Therefore, adequate training for all healthcare providers who interact with families is essential. In addition, when patients spend prolonged periods of time within the ICU or have multiple subspecialty services involved, the identification of a continuity provider whose role is to maintain consistency in the healthcare plan while ensuring adequate communication with the family may be beneficial. However, current evidence is inadequate to demonstrate clear benefit of or harm from increasing staffing consistency. Furthermore, using a team approach with respectful and excellent communication among team members, including physicians and nurses, ensures that clear, consistent, and comprehensive information is shared in an empathetic manner. Collaboration within the healthcare team results in improved overall outcomes in critical care, including increased patient survival, decreased length of stay, and decreased readmission rates, in addition to improved patient and family satisfaction, decreased symptoms of anxiety and depression among family members, and reduced ICU nurse and physician burnout.
Rounds in the ICU serve several purposes, including (1) to provide a setting for decision-making related to the management of the child’s care; (2) to ensure adequate communication among healthcare team members; and (3) to allow for teaching of medical students, residents, and other trainees. Incorporating the patient and family into these rounds fosters a partnership with the family and aligns with a patient- and family-centered approach. While larger and more extensive studies are necessary to fully determine the benefits and potential barriers to this approach, many professional organizations endorse it. According to several pediatric studies, this approach improves family satisfaction, improves communication between all stakeholders, increases family trust in the medical team, and potentially improves the quality of medical care provided, leading to shorter lengths of stay. Several potential barriers and healthcare provider concerns regarding this approach include (1) prolongation of rounds, (2) breach of confidentiality of protected health information, (3) reduced opportunities for teaching, and (4) concern for undermining trust of the healthcare team when different opinions are shared or teaching is done. , , Current evidence suggests that family presence on rounds does increase per patient rounding times. However, family-centered rounds exhibit other benefits. Family-centered rounds have demonstrated improved efficiency and communication because family concerns are addressed with clarity, preventing communication gaps and confusion. In addition, family presence usually lends itself to additional teaching opportunities. , Finally, when surveyed, the majority of parents are not concerned about privacy issues. Therefore this concern can easily be discussed with parents on an individual basis. , , To remain effective and efficient, using a family-centered approach to rounding requires thoughtful planning and following specific guidelines to streamline the process. Highlighting the purpose of rounds to all stakeholders and identifying explicit roles prior to rounds can help prevent misunderstandings.
Structured transdisciplinary care conferences
In critical care, in which illnesses are life threatening and changes occur rapidly, sharing information with frequent updates at the bedside is crucial. Furthermore, in circumstances in which medical decision-making is highly complex, multiple subspecialties and disciplines are involved, or the severity of illness may lead to the demise of the patient, proactive and timely structured transdisciplinary care conferences may also be beneficial. Although there is variability in the approach and style of these conferences, the palliative care and adult critical care literature provides a general framework for the facilitation of these conferences and highlights several tools. , , , , In adult critical care, specific aspects of these conferences are associated with increased quality of care, decreased family psychological symptoms, improved family ratings of communication, and improved outcomes. These aspects include timeliness (occur within 72 hours of ICU admission), private location for the conference, consistent communication by all members of the healthcare team, increased proportion of time spent listening to families speak, the use of empathetic statements, assurance that the loved one will not suffer, and providing explicit support for decisions made by the family. , Current pediatric research suggests that pediatric intensivists fail to incorporate certain aspects that make transdisciplinary conferences effective for furthering PFCC. Often pediatric intensivists dominate conversations in family conferences, focus mostly on the medical aspects of care, and use complex speech, possibly preventing valuable family engagement in these conferences. While additional research is needed to detail the benefits and potential negative aspects of this format for communication in the pediatric patient population, using elements of high-quality communication should be considered as potentially useful to optimize communication with families.
Providing transdisciplinary support for the family unit
Fundamental to PFCC is “providing and ensuring formal and informal support for the child and family for each phase of the child’s life.” Owing to the complex nature of pediatric critical illness and the high level of emotional distress triggered by hospitalization, a transdisciplinary team approach is necessary to provide full support for the patient and family, including siblings, who are at high risk for feeling abandoned and neglected. Acknowledging that patients and families enter the ICU with varying degrees of internal coping mechanisms in addition to external support systems is critical to optimizing support.
Teams from a multitude of disciplines, all with different expertise, should be incorporated into the healthcare team, when appropriate, to help demonstrate the value in providing a holistic approach to care. Nurses at the bedside play a crucial role in recognizing family coping strategies, identifying unmet family needs, and bridging gaps in communication. Consultation with subspecialists in palliative care and ethics should be considered early in the course of hospitalization to improve communication, prevent conflict, identify important goals through eliciting patient values and preferences, and ultimately optimize shared medical decision-making. Physical therapy, occupational therapy, and rehabilitation medicine should be incorporated into the patient’s care using a systematic approach to assist with functional recovery and potentially improve long-term quality of life. Specialists in music therapy, art therapy, pet therapy, psychology, child life, and educational services can improve the quality of life in the ICU and reduce ICU-related morbidities, such as anxiety, depression, delirium, psychosis, and PTSD. , Social workers can provide assistance to reduce both emotional distress and stressors that arise from practical aspects of having a child hospitalized, such as food, transportation, and employment, while chaplains can address the spiritual needs of the patient and family. , , With the multitudes of providers involved, excellent communication is necessary to avoid additional stressors to families that inconsistent messaging can cause.
In addition to incorporating healthcare providers from multiple disciplines, peer-to-peer support can also be highly beneficial. Families may choose to serve on patient advocacy committees, share their experiences with other families through family support groups, and volunteer to serve as consultants to other families who are affected by similar disease processes or experiences. Allowing families who are in a crisis mode to contact and access other families who have shared similar experiences may broaden coping mechanisms and may help guide families through their journey, particularly when they are faced with making very difficult decisions.
Collaborating and building partnerships with patients and families
Developing a partnership with families is essential to fulfilling the fundamental principles of PFCC. A partnership requires an “interpersonal relationship between two or more people who work together to achieve a mutually defined purpose” which, in the PICU, is “providing the best possible care for the child from a holistic perspective.” The holistic approach requires inclusion of the family, as the center of strength for the child. When partnering with parents and caregivers, who know the child best and provide invaluable information regarding who the child is as a person, healthcare providers treat the child more effectively and address the child’s needs more appropriately. This partnership allows parents and healthcare providers to contribute their own expertise to achieve a common goal, leading to a relationship in which the power differential between healthcare providers and families equalizes.
While building a partnership with patients and families at the bedside is essential, optimizing PFCC also requires collaboration “at all levels of healthcare: in the delivery of care to the individual child; in professional education, policy making, program development, implementation, and evaluation; and in healthcare facility design.” Encouraging families to participate in all dimensions of healthcare through serving on family advisory councils, quality improvement projects, and developing research protocols is critical. Furthermore, building this partnership requires a transdisciplinary approach and is “grounded in collaboration among patients, families, physicians, nurses, and other professionals in clinical care.” In order to optimize these relationships, clarity and transparency regarding the roles, boundaries, and expertise of each stakeholder is critical.
Empowering patients and families to facilitate shared medical decision-making
PFCC is optimized through “recognizing and building on the strengths of individual children and families and empowering them to discover their own strengths, build confidence, and participate in making choices and decisions about their healthcare.” Empowering the patient and family to participate in shared decision-making is fundamental, for “the perspectives and information provided by families, children, and young adults are essential components of high-quality clinical decision-making.” In the setting of the ICU, complex and high-stakes decisions are made in a short time frame. In many circumstances, there is a high degree of uncertainty in outcomes, making these decisions even more difficult. The majority of these clinical decisions are based on the medical expertise, empirical evidence, experience of the healthcare providers and consultants, and—most importantly—values and perspectives of the patient and family.
By definition, shared decision-making occurs when both the physician and patient (if possible) and family “share their opinions and jointly reach a decision.” Dimensions of shared decision-making include (1) providing medical information and eliciting patient values, preferences, and goals; (2) exploring family’s preferred role in decision-making; and (3) deliberation and decision-making. , Collaborative communication, as discussed earlier in this chapter, is required to adequately fulfill the first dimension. In regard to dimension two, multiple studies demonstrate that families have varying decision-making preferences, particularly regarding limitation of life support or other aggressive interventions. , Therefore prior to making assumptions, exploring the family’s preferential role in decision-making is important. Furthermore, shared decision-making should not be interpreted as allowing the family to decide without support from the providers or giving families increased responsibility or autonomy, as “there is a fine balance between supporting and guiding a family while allowing the family appropriate space to make their own decisions.” Most families do not want to feel alone when making difficult decisions. Recommendations and guidance from providers may help alleviate potential burdens associated with making difficult decisions. Finally, shared decision-making does not mean that families should exclusively drive medical care or be empowered to make decisions that are not medically sound. The key aspect of shared decision-making is that the process is collaborative and incorporates the opinions and expertise of all stakeholders. Finding the right balance among stakeholders to achieve goal-oriented patient care through established frameworks for shared decision-making is necessary to provide optimal PFCC.
There are multiple benefits associated with shared decision-making. When patients and families become active participants in their healthcare, there is improved understanding and more motivation to follow through with care. In addition, for parents and caregivers who lose their sense of control with the hospitalization of a critically ill child, participating in decisions can provide a great source of strength. As one mother explains, “I was able to still be her mom.” By “encouraging them to continue actively in their parental role by promoting shared decision making and helping the family to retain their responsibilities throughout hospitalization” parents and caregivers retain their identities, which fosters the integrity of the parent-child relationship, maintains cultural and family traditions, and demonstrates respect for and value of the child as a person. , Although further studies are necessary to elucidate the important driving factors for parental decision-making, parents overall want to be “good parents.” Understanding what parents value as important factors in “being a good parent” potentially may improve the quality of PFCC.
Patient- and family-centered care improves outcomes for all stakeholders
Over the past 2 decades, PFCC has improved outcomes in the provision of high-quality patient care. According to the AAP, “patient and family-centered care can improve patient and family outcomes, improve the patient’s and family’s experience, increase patient and family satisfaction, build on child and family strengths, increase professional satisfaction, decrease healthcare costs, and lead to more effective use of healthcare resources.”
According to numerous studies, patients and families directly benefit from the incorporation of the fundamental principles into practice. Patients and families have reduced anxiety, better cooperation, improved satisfaction, reduced emotional distress, better adjustment to hospitalization, and faster recovery from illness and surgery. , Because the needs of families are addressed more explicitly, families also have improved functioning, increased confidence in providing ongoing care to their child, are more willing to seek help from healthcare providers, develop a greater degree of trust, and demonstrate improved competence in problem-solving and making complicated healthcare decisions. , When families receive clear and consistent communication and actively participate in the care of their child, they experience a greater sense of control, resulting in preservation of the parent-child relationship, with reduced anxiety, posttraumatic stress, and complicated grief.
Implementing PFCC in PICUs has special implications in the setting of pediatric death. The majority of inpatient pediatric deaths occur in the PICU. Current end-of-life practices in the ICU are suboptimal. Families describe disempowerment, loss of control, and alienation from their dying child in the ICU as a result of both their child’s illness and the cultural and physical environment in the PICU. Moreover, bereaved parents are at risk for adverse mental and physical health after their child’s death. Compassionate and empathetic PFCC in PICUs may help improve end-of-life care and mitigate bereavement outcomes by helping parents preserve their parental role, engaging families more, maintaining the pediatric patient’s personhood, and fostering meaning making.
Healthcare providers, institutions, and the healthcare systems also directly benefit from PFCC. When healthcare providers gain important insights into the needs and values of patients and their families, they establish trusting relationships and improve the quality, efficiency, and safety of the care they provide. As a result, providers have improved work satisfaction, which leads to improved job performance, reduced burnout, and decreased staff turnover. With the provision of higher-quality care, healthcare institutions and systems benefit with reduced healthcare costs, improved patient and family satisfaction, reduced risk for litigation, and potentially gain a more competitive position in the marketplace.
Overcoming barriers and challenges to patient- and family-centered care in the intensive care unit
While significant progress has been made in incorporating PFCC into the ICU, there remains a gap between current and proposed practice. Ongoing research reveals that families continue to express that their needs are not always met. , , , , While the reason for this gap in practice is likely multifactorial, there are several barriers that are extremely challenging to overcome ( Box 16.1 ). First, there is a fundamental difference in perceiving the ICU as a “bedroom” versus an “office.” For families, the ICU needs to serve as a bedroom, where a sick child can experience warmth, comfort, and a healing environment. On the other hand, critical care providers need an office equipped with computers, monitors, alarms, and advanced technology. This dichotomy fundamentally inhibits the creation of a bedroom and reinforces the role of “the visitor” and “the patient,” rather than fostering a collaborative partnership. Second, the emotional intensity of life-altering and life-threatening circumstances is unavoidable. The impact of this emotional intensity on patients and families and the complexity of the medical care provided creates an implicit power differential between healthcare providers, patients, and families, further reducing the ability to develop a partnership. Finally, the necessity of making high-stakes decisions wrought with uncertainty exposes fundamental differences in belief and value systems that are potentially challenging to overcome. Even under ideal circumstances with the most advanced communication systems and extensive training in cultural humility, these differences can create intense barriers and conflict rooted in different perceptions of what is in the best interest of the patient. These conflicts further prohibit the development of partnership. Overcoming these fundamental barriers requires acknowledgment, transparency, and further research to identify both the explicit and implicit practices and values within the ICU ( Box 16.2 ). Using a model of PFCC, this research requires employing a collaborative approach in which all stakeholders have an equal voice in order to develop creative solutions.