Alisa Khan, MD, MPH

For parents of children with medical complexity (CMC), bringing a child to the hospital for needed expertise, equipment, and support is necessarily accompanied by a loss of power, freedom, and control. Two of our authors (K.L., P.M.) are parents of CMC—patients affectionately known as “frequent flyers” at their local hospitals. When health needs present, these experienced parents quickly identify what can be managed at home and what needs a higher level of care. The autonomy and security that accompany this parental expertise have been mitigated by, and in some cases even lost in, the COVID-19 pandemic. In particular, one of the most obvious changes to patients’ and families’ roles in inpatient care has been in communication practices, including changes to patient- and family-centered rounding that result from current isolation procedures and visitation policies. Over the past few months, we’ve learned a tremendous amount from providers and caregivers of hospitalized patients; in this article, we share some of what they’ve taught us.

Before we continue, we take a humble pause. The process of writing this piece spanned weeks during which certain areas of the world were overwhelmed. Our perspective has been informed by others who shared their experiences, and as a result, our health systems are more prepared. We offer this perspective recognizing the importance of learning from others and feeling a sense of gratitude to the providers and patients on the front lines.

As a group of parents, nurses, physicians, educators, and researchers who have spent the last 10 years studying how to communicate more effectively in the healthcare setting,^1,2 we find ourselves in uncharted territory. Even now, we are engaged in an ongoing mentored implementation program examining the effects of a communication bundle on patient- and family- centered rounds (PFCRs) at 21 teaching hospitals across North America (the SHM I-PASS SCORE Study).³ COVID-19 has put that study on hold, and we have taken a step back to reassess the most basic communication needs of patients and families under any circumstance.

Even among our study group, our family advisors have also been on the front lines as patients and caregivers. One author (P.M.), shared a recent experience that she and her son, John Michael had:

“My son [who has autoimmune hepatitis and associated conditions] began coughing and had an intense sinus headache. As his symptoms continued, our concern steadily grew: Could we push through at home or would we have to go in [to the hospital] to seek care? My mind raced. We faced this decision many times, but never with the overwhelming threat of COVID-19 in the equation. My son, who is able to recognize troublesome symptoms, was afraid his sinuses were infected and decided that we should go in. My heart sank.”

Now, amid the COVID-19 pandemic, we have heard that patients like John Michael, who are accustomed to the healthcare setting, are “terrified with this additional concern of just being safe in the hospital,” reported a member of our Family Advisory Council. One of our members added, “We recognize this extends to the providers as well, who maintain great care despite their own family and personal safety concerns.” Although families affirmed the necessity of the enhanced isolation procedures and strict visitation policies, they also highlighted the effects of these changes on usual communication practices, including PFCRs.

In response to these sentiments, we reached out to all of our family advisors, as well as other team members, for suggestions on how healthcare teams could help patients and families best manage their hospital experiences in the setting of COVID-19. Additionally, we asked our physician and nursing colleagues across health systems about current inpatient unit adaptations. Their suggestions and adaptations reinforced and directly aligned with some of the core values of family engagement and patient- and family-centered care,⁴ namely, (1) prioritizing communication, (2) maintaining active engagement with patients and families, and (3) enhancing communication with technology.

Prioritizing Communication

Timely and clear communication can help providers manage the expectations of patients and families, build patient and family feelings of confidence, and reduce their feelings of anxiety and vulnerability. Almost universally, families acknowledged the importance of infection control and physical distancing measures while fearing that decreased entry into rooms would lead to decreased communication. “Since COVID-19 is contagious, families will want to see every precaution taken … but in a way that doesn’t cut off communication and leave an already sick and scared child and their family feeling emotionally isolated in a scary situation,” an Advisory Council member recounted. Importantly, one parent shared that hearing about personal protective equipment conservation could amplify stress because of fear their child wouldn’t be protected. These perspectives remind us that families may be experiencing heightened sensitivity and vulnerability during this pandemic.

Maintaining Active Engagement With Patients and Families

PFCRs continue to be an ideal setting for providers, patients, and families to communicate and build shared understanding, as well as build rapport and connection through human interactions. Maintaining rounding structures, when possible, reinforces familiarity with roles and expectations, among both patients who have been hospitalized in the past and those hospitalized for the first time. Adapting rounds may be as simple as opening the door during walk-rounds to invite caregiver participation while being aware of distancing. With large rounding teams, more substantial workflow changes may be necessary.

Beyond PFCRs, patients and family members can be further engaged through tasks/responsibilities for the time in between rounding communication. Examples include recording patient symptoms (eg, work of breathing) or actions (eg, how much water their child drinks). By doing this, patients and caregivers who feel helpless and anxious may be given a greater sense of control while at the same time making helpful contributions to medical care.

Parents also expressed value in reinforcing the message that patients and families are experts about themselves/their loved ones. Healthcare teams can invite their insights, questions, and concerns to show respect for their expertise and value. This builds trust and leads to a feeling of togetherness and teamwork. Across the board, families stressed the value of family engagement and communication in ideal conditions, and even more so in this time of upheaval.

Enhancing Communication With Technology

Many hospitals are leveraging technology to promote communication by integrating workstations on wheels & tablets with video-conferencing software (eg, Zoom, Skype) and even by adding communication via email and phone. While fewer team members are entering rooms, rounding teams are still including the voices of pharmacists, nutritionists, social workers, primary care physicians, and caregivers who are unable to be at the bedside.

These alternative communication methods may actually provide patients with more comfortable avenues for participating in their own care even beyond the pandemic. Children, in particular, may have strong opinions about their care but may not be comfortable speaking up in front of providers whom they don’t know very well. Telehealth, whiteboards, email, and limiting the number of providers in the room might actually create a more approachable environment for these patients even under routine conditions.

Patients, families, nurses, physicians, and other team members all feel the current stress on our healthcare system. As we continue to change workflows, alignment with principles of family engagement and patient- and family-centered care⁴ remain a priority for all involved. Prioritizing effective communication, maintaining engagement with patients and families, and using technology in new ways will all help us maintain high standards of care in both typical and completely atypical settings, such as during this pandemic. Nothing captures the benefits of effective communication better than P.M.’s description of John Michael’s experience during his hospitalization:

“Although usually an expedited triage patient, we spent hours in the ER among other ill and anxious patients. Ultimately, John Michael tested positive for influenza A. We spent 5 days in the hospital on droplet protection.

“The staff was amazing! The doctors and nurses communicated with us every step of the way. They made us aware of extra precautions and explained limitations, like not being able to go in the nutrition room or only having the doctors come in once midday. Whenever they did use [personal protective equipment] and come in, the nurses and team kept a safe distance but made sure to connect with John Michael, talking about what was on TV, what his favorite teams are, asking about his sisters, and always asking if we needed anything or if there was anything they could do. I am grateful for the kind, compassionate, and professional people who continue to care for our children under the intense danger and overwhelming magnitude of COVID-19.”

Dr Landrigan has served as a paid consultant to the Midwest Lighting Institute to help study the effect of blue light on health care provider performance and safety. He has consulted with and holds equity in the I-PASS Institute, which seeks to train institutions in best handoff practices and aid in their implementation. Dr Landrigan has received consulting fees from the Missouri Hospital Association/Executive Speakers Bureau for consulting on I-PASS. In addition, he has received monetary awards, honoraria, and travel reimbursement from multiple academic and professional organizations for teaching and consulting on sleep deprivation, physician performance, handoffs, and safety and has served as an expert witness in cases regarding patient safety and sleep deprivation. Drs Spector and Baird have also consulted with and hold equity in the I-PASS Institute. Dr Baird has consulted with the I-PASS Patient Safety Institute. Dr Patel holds equity/stock options in and has consulted for the I-PASS Patient Safety Institute. Dr Rosenbluth previously consulted with the I-PASS Patient Safety Institute, but not within the past 36 months. The other authors have no conflicts of interest or external support other than the existing PCORI funding for the Society of Hospital Medicine I-PASS SCORE study.

The I-PASS Patient Safety Institute did not provide support to any authors for this work.

For parents of children with medical complexity (CMC), bringing a child to the hospital for needed expertise, equipment, and support is necessarily accompanied by a loss of power, freedom, and control. Two of our authors (K.L., P.M.) are parents of CMC—patients affectionately known as “frequent flyers” at their local hospitals. When health needs present, these experienced parents quickly identify what can be managed at home and what needs a higher level of care. The autonomy and security that accompany this parental expertise have been mitigated by, and in some cases even lost in, the COVID-19 pandemic. In particular, one of the most obvious changes to patients’ and families’ roles in inpatient care has been in communication practices, including changes to patient- and family-centered rounding that result from current isolation procedures and visitation policies. Over the past few months, we’ve learned a tremendous amount from providers and caregivers of hospitalized patients; in this article, we share some of what they’ve taught us.

Before we continue, we take a humble pause. The process of writing this piece spanned weeks during which certain areas of the world were overwhelmed. Our perspective has been informed by others who shared their experiences, and as a result, our health systems are more prepared. We offer this perspective recognizing the importance of learning from others and feeling a sense of gratitude to the providers and patients on the front lines.

As a group of parents, nurses, physicians, educators, and researchers who have spent the last 10 years studying how to communicate more effectively in the healthcare setting,^1,2 we find ourselves in uncharted territory. Even now, we are engaged in an ongoing mentored implementation program examining the effects of a communication bundle on patient- and family- centered rounds (PFCRs) at 21 teaching hospitals across North America (the SHM I-PASS SCORE Study).³ COVID-19 has put that study on hold, and we have taken a step back to reassess the most basic communication needs of patients and families under any circumstance.

Even among our study group, our family advisors have also been on the front lines as patients and caregivers. One author (P.M.), shared a recent experience that she and her son, John Michael had:

“My son [who has autoimmune hepatitis and associated conditions] began coughing and had an intense sinus headache. As his symptoms continued, our concern steadily grew: Could we push through at home or would we have to go in [to the hospital] to seek care? My mind raced. We faced this decision many times, but never with the overwhelming threat of COVID-19 in the equation. My son, who is able to recognize troublesome symptoms, was afraid his sinuses were infected and decided that we should go in. My heart sank.”

Now, amid the COVID-19 pandemic, we have heard that patients like John Michael, who are accustomed to the healthcare setting, are “terrified with this additional concern of just being safe in the hospital,” reported a member of our Family Advisory Council. One of our members added, “We recognize this extends to the providers as well, who maintain great care despite their own family and personal safety concerns.” Although families affirmed the necessity of the enhanced isolation procedures and strict visitation policies, they also highlighted the effects of these changes on usual communication practices, including PFCRs.

In response to these sentiments, we reached out to all of our family advisors, as well as other team members, for suggestions on how healthcare teams could help patients and families best manage their hospital experiences in the setting of COVID-19. Additionally, we asked our physician and nursing colleagues across health systems about current inpatient unit adaptations. Their suggestions and adaptations reinforced and directly aligned with some of the core values of family engagement and patient- and family-centered care,⁴ namely, (1) prioritizing communication, (2) maintaining active engagement with patients and families, and (3) enhancing communication with technology.

Prioritizing Communication

Timely and clear communication can help providers manage the expectations of patients and families, build patient and family feelings of confidence, and reduce their feelings of anxiety and vulnerability. Almost universally, families acknowledged the importance of infection control and physical distancing measures while fearing that decreased entry into rooms would lead to decreased communication. “Since COVID-19 is contagious, families will want to see every precaution taken … but in a way that doesn’t cut off communication and leave an already sick and scared child and their family feeling emotionally isolated in a scary situation,” an Advisory Council member recounted. Importantly, one parent shared that hearing about personal protective equipment conservation could amplify stress because of fear their child wouldn’t be protected. These perspectives remind us that families may be experiencing heightened sensitivity and vulnerability during this pandemic.

Maintaining Active Engagement With Patients and Families

PFCRs continue to be an ideal setting for providers, patients, and families to communicate and build shared understanding, as well as build rapport and connection through human interactions. Maintaining rounding structures, when possible, reinforces familiarity with roles and expectations, among both patients who have been hospitalized in the past and those hospitalized for the first time. Adapting rounds may be as simple as opening the door during walk-rounds to invite caregiver participation while being aware of distancing. With large rounding teams, more substantial workflow changes may be necessary.

Beyond PFCRs, patients and family members can be further engaged through tasks/responsibilities for the time in between rounding communication. Examples include recording patient symptoms (eg, work of breathing) or actions (eg, how much water their child drinks). By doing this, patients and caregivers who feel helpless and anxious may be given a greater sense of control while at the same time making helpful contributions to medical care.

Parents also expressed value in reinforcing the message that patients and families are experts about themselves/their loved ones. Healthcare teams can invite their insights, questions, and concerns to show respect for their expertise and value. This builds trust and leads to a feeling of togetherness and teamwork. Across the board, families stressed the value of family engagement and communication in ideal conditions, and even more so in this time of upheaval.

Enhancing Communication With Technology

Many hospitals are leveraging technology to promote communication by integrating workstations on wheels & tablets with video-conferencing software (eg, Zoom, Skype) and even by adding communication via email and phone. While fewer team members are entering rooms, rounding teams are still including the voices of pharmacists, nutritionists, social workers, primary care physicians, and caregivers who are unable to be at the bedside.

These alternative communication methods may actually provide patients with more comfortable avenues for participating in their own care even beyond the pandemic. Children, in particular, may have strong opinions about their care but may not be comfortable speaking up in front of providers whom they don’t know very well. Telehealth, whiteboards, email, and limiting the number of providers in the room might actually create a more approachable environment for these patients even under routine conditions.

Patients, families, nurses, physicians, and other team members all feel the current stress on our healthcare system. As we continue to change workflows, alignment with principles of family engagement and patient- and family-centered care⁴ remain a priority for all involved. Prioritizing effective communication, maintaining engagement with patients and families, and using technology in new ways will all help us maintain high standards of care in both typical and completely atypical settings, such as during this pandemic. Nothing captures the benefits of effective communication better than P.M.’s description of John Michael’s experience during his hospitalization:

“Although usually an expedited triage patient, we spent hours in the ER among other ill and anxious patients. Ultimately, John Michael tested positive for influenza A. We spent 5 days in the hospital on droplet protection.

“The staff was amazing! The doctors and nurses communicated with us every step of the way. They made us aware of extra precautions and explained limitations, like not being able to go in the nutrition room or only having the doctors come in once midday. Whenever they did use [personal protective equipment] and come in, the nurses and team kept a safe distance but made sure to connect with John Michael, talking about what was on TV, what his favorite teams are, asking about his sisters, and always asking if we needed anything or if there was anything they could do. I am grateful for the kind, compassionate, and professional people who continue to care for our children under the intense danger and overwhelming magnitude of COVID-19.”

Dr Landrigan has served as a paid consultant to the Midwest Lighting Institute to help study the effect of blue light on health care provider performance and safety. He has consulted with and holds equity in the I-PASS Institute, which seeks to train institutions in best handoff practices and aid in their implementation. Dr Landrigan has received consulting fees from the Missouri Hospital Association/Executive Speakers Bureau for consulting on I-PASS. In addition, he has received monetary awards, honoraria, and travel reimbursement from multiple academic and professional organizations for teaching and consulting on sleep deprivation, physician performance, handoffs, and safety and has served as an expert witness in cases regarding patient safety and sleep deprivation. Drs Spector and Baird have also consulted with and hold equity in the I-PASS Institute. Dr Baird has consulted with the I-PASS Patient Safety Institute. Dr Patel holds equity/stock options in and has consulted for the I-PASS Patient Safety Institute. Dr Rosenbluth previously consulted with the I-PASS Patient Safety Institute, but not within the past 36 months. The other authors have no conflicts of interest or external support other than the existing PCORI funding for the Society of Hospital Medicine I-PASS SCORE study.

The I-PASS Patient Safety Institute did not provide support to any authors for this work.

For parents of children with medical complexity (CMC), bringing a child to the hospital for needed expertise, equipment, and support is necessarily accompanied by a loss of power, freedom, and control. Two of our authors (K.L., P.M.) are parents of CMC—patients affectionately known as “frequent flyers” at their local hospitals. When health needs present, these experienced parents quickly identify what can be managed at home and what needs a higher level of care. The autonomy and security that accompany this parental expertise have been mitigated by, and in some cases even lost in, the COVID-19 pandemic. In particular, one of the most obvious changes to patients’ and families’ roles in inpatient care has been in communication practices, including changes to patient- and family-centered rounding that result from current isolation procedures and visitation policies. Over the past few months, we’ve learned a tremendous amount from providers and caregivers of hospitalized patients; in this article, we share some of what they’ve taught us.

Before we continue, we take a humble pause. The process of writing this piece spanned weeks during which certain areas of the world were overwhelmed. Our perspective has been informed by others who shared their experiences, and as a result, our health systems are more prepared. We offer this perspective recognizing the importance of learning from others and feeling a sense of gratitude to the providers and patients on the front lines.

As a group of parents, nurses, physicians, educators, and researchers who have spent the last 10 years studying how to communicate more effectively in the healthcare setting,^1,2 we find ourselves in uncharted territory. Even now, we are engaged in an ongoing mentored implementation program examining the effects of a communication bundle on patient- and family- centered rounds (PFCRs) at 21 teaching hospitals across North America (the SHM I-PASS SCORE Study).³ COVID-19 has put that study on hold, and we have taken a step back to reassess the most basic communication needs of patients and families under any circumstance.

Even among our study group, our family advisors have also been on the front lines as patients and caregivers. One author (P.M.), shared a recent experience that she and her son, John Michael had:

“My son [who has autoimmune hepatitis and associated conditions] began coughing and had an intense sinus headache. As his symptoms continued, our concern steadily grew: Could we push through at home or would we have to go in [to the hospital] to seek care? My mind raced. We faced this decision many times, but never with the overwhelming threat of COVID-19 in the equation. My son, who is able to recognize troublesome symptoms, was afraid his sinuses were infected and decided that we should go in. My heart sank.”

Now, amid the COVID-19 pandemic, we have heard that patients like John Michael, who are accustomed to the healthcare setting, are “terrified with this additional concern of just being safe in the hospital,” reported a member of our Family Advisory Council. One of our members added, “We recognize this extends to the providers as well, who maintain great care despite their own family and personal safety concerns.” Although families affirmed the necessity of the enhanced isolation procedures and strict visitation policies, they also highlighted the effects of these changes on usual communication practices, including PFCRs.

In response to these sentiments, we reached out to all of our family advisors, as well as other team members, for suggestions on how healthcare teams could help patients and families best manage their hospital experiences in the setting of COVID-19. Additionally, we asked our physician and nursing colleagues across health systems about current inpatient unit adaptations. Their suggestions and adaptations reinforced and directly aligned with some of the core values of family engagement and patient- and family-centered care,⁴ namely, (1) prioritizing communication, (2) maintaining active engagement with patients and families, and (3) enhancing communication with technology.

Prioritizing Communication

Timely and clear communication can help providers manage the expectations of patients and families, build patient and family feelings of confidence, and reduce their feelings of anxiety and vulnerability. Almost universally, families acknowledged the importance of infection control and physical distancing measures while fearing that decreased entry into rooms would lead to decreased communication. “Since COVID-19 is contagious, families will want to see every precaution taken … but in a way that doesn’t cut off communication and leave an already sick and scared child and their family feeling emotionally isolated in a scary situation,” an Advisory Council member recounted. Importantly, one parent shared that hearing about personal protective equipment conservation could amplify stress because of fear their child wouldn’t be protected. These perspectives remind us that families may be experiencing heightened sensitivity and vulnerability during this pandemic.

Maintaining Active Engagement With Patients and Families

PFCRs continue to be an ideal setting for providers, patients, and families to communicate and build shared understanding, as well as build rapport and connection through human interactions. Maintaining rounding structures, when possible, reinforces familiarity with roles and expectations, among both patients who have been hospitalized in the past and those hospitalized for the first time. Adapting rounds may be as simple as opening the door during walk-rounds to invite caregiver participation while being aware of distancing. With large rounding teams, more substantial workflow changes may be necessary.

Beyond PFCRs, patients and family members can be further engaged through tasks/responsibilities for the time in between rounding communication. Examples include recording patient symptoms (eg, work of breathing) or actions (eg, how much water their child drinks). By doing this, patients and caregivers who feel helpless and anxious may be given a greater sense of control while at the same time making helpful contributions to medical care.

Parents also expressed value in reinforcing the message that patients and families are experts about themselves/their loved ones. Healthcare teams can invite their insights, questions, and concerns to show respect for their expertise and value. This builds trust and leads to a feeling of togetherness and teamwork. Across the board, families stressed the value of family engagement and communication in ideal conditions, and even more so in this time of upheaval.

Enhancing Communication With Technology

Many hospitals are leveraging technology to promote communication by integrating workstations on wheels & tablets with video-conferencing software (eg, Zoom, Skype) and even by adding communication via email and phone. While fewer team members are entering rooms, rounding teams are still including the voices of pharmacists, nutritionists, social workers, primary care physicians, and caregivers who are unable to be at the bedside.

These alternative communication methods may actually provide patients with more comfortable avenues for participating in their own care even beyond the pandemic. Children, in particular, may have strong opinions about their care but may not be comfortable speaking up in front of providers whom they don’t know very well. Telehealth, whiteboards, email, and limiting the number of providers in the room might actually create a more approachable environment for these patients even under routine conditions.

Patients, families, nurses, physicians, and other team members all feel the current stress on our healthcare system. As we continue to change workflows, alignment with principles of family engagement and patient- and family-centered care⁴ remain a priority for all involved. Prioritizing effective communication, maintaining engagement with patients and families, and using technology in new ways will all help us maintain high standards of care in both typical and completely atypical settings, such as during this pandemic. Nothing captures the benefits of effective communication better than P.M.’s description of John Michael’s experience during his hospitalization:

“Although usually an expedited triage patient, we spent hours in the ER among other ill and anxious patients. Ultimately, John Michael tested positive for influenza A. We spent 5 days in the hospital on droplet protection.

“The staff was amazing! The doctors and nurses communicated with us every step of the way. They made us aware of extra precautions and explained limitations, like not being able to go in the nutrition room or only having the doctors come in once midday. Whenever they did use [personal protective equipment] and come in, the nurses and team kept a safe distance but made sure to connect with John Michael, talking about what was on TV, what his favorite teams are, asking about his sisters, and always asking if we needed anything or if there was anything they could do. I am grateful for the kind, compassionate, and professional people who continue to care for our children under the intense danger and overwhelming magnitude of COVID-19.”

Dr Landrigan has served as a paid consultant to the Midwest Lighting Institute to help study the effect of blue light on health care provider performance and safety. He has consulted with and holds equity in the I-PASS Institute, which seeks to train institutions in best handoff practices and aid in their implementation. Dr Landrigan has received consulting fees from the Missouri Hospital Association/Executive Speakers Bureau for consulting on I-PASS. In addition, he has received monetary awards, honoraria, and travel reimbursement from multiple academic and professional organizations for teaching and consulting on sleep deprivation, physician performance, handoffs, and safety and has served as an expert witness in cases regarding patient safety and sleep deprivation. Drs Spector and Baird have also consulted with and hold equity in the I-PASS Institute. Dr Baird has consulted with the I-PASS Patient Safety Institute. Dr Patel holds equity/stock options in and has consulted for the I-PASS Patient Safety Institute. Dr Rosenbluth previously consulted with the I-PASS Patient Safety Institute, but not within the past 36 months. The other authors have no conflicts of interest or external support other than the existing PCORI funding for the Society of Hospital Medicine I-PASS SCORE study.

The I-PASS Patient Safety Institute did not provide support to any authors for this work.

Introduction

The National Academy of Medicine (NAM; previously the Institute of Medicine [IOM]), the American Academy of Pediatrics, and the Accreditation Council for Graduate Medical Education have all called for an increased emphasis on patient and family centered care. Family centered care (FCC) involves collaboration between patients, the family/caregivers, healthcare providers, and hospital administration to address the needs of individual patients, populations, and healthcare systems. It can inform policy, facility design, healthcare outcomes evaluation, and individual daily interactions. Thus, FCC is used to plan, deliver, and evaluate healthcare; conduct research; provide education; and improve healthcare quality. Pediatric hospitalists were first to lead national efforts to espouse family centered rounds (FCR), which is a cornerstone of a larger FCC program. Pediatric hospitalists promote high quality FCC by embedding it into daily interactions with patients and the family/caregivers, modeling and teaching it to trainees, and applying it to clinical care, medical education, research, quality improvement, hospital operations, and patient safety.

Pediatric hospitalists should be able to:

• Summarize the features of FCC, drawing upon existing frameworks from organizations such as the NAM, the Agency for Healthcare Research and Quality, and the Picker Institute.
• Describe the Picker Institute’s 8 Principles of Patient Centered Care: 1) respect for patient preferences, 2) coordination and integration of care, 3) information and education, 4) physical comfort, 5) emotional support, 6) involvement of family and friends, 7) continuity and transition, and 8) access to care.
• Summarize common components of a comprehensive healthcare system FCC program, attending to family involvement on advisory councils and boards, research committees, and electronic medical record groups, as well as healthcare system community partnerships and other relationships.
• Review the concept of “co-production”, which involves co-execution, co-planning, and civil discourse between patients, professionals, the healthcare system, and the community and society in order to achieve high-value healthcare and promote good health for all.
• Give examples of common best practices for FCR, including the family/caregivers speaking first, healthcare providers speaking in language understood by the family/caregivers, making plans and goal setting with the family/caregivers, asking open-ended questions, and assessing family/caregivers’ understanding.
• Describe the role of “patient activation” (patients attaining the confidence, knowledge, and skills to manage and maintain one’s health and healthcare needs) in promoting FCC in the inpatient setting.
• Discuss the steps of shared decision-making, including 1) seeking a patient’s participation, 2) helping a patient to explore and compare treatment options, 3) assessing a patient’s values and preferences, 4) reaching a decision with a patient, and 5) evaluating a patient’s decision.
• Discuss best practices of shared decision-making and give examples of where shared decision-making may be used inside and outside the setting of hospital rounds.
• Give examples of universal health literacy precautions use during communications with patients and the family/caregivers, including using plain language, minimizing unnecessary medical jargon, breaking down complex concepts into understandable pieces, bidirectional communication, and reinforcement with written or internet-based educational materials.
• Define implicit bias and review how unconscious, automatic stereotypes can affect understanding and decisions, leading to inconsistent management and healthcare outcome disparities.
• Discuss how differing experiences and views on race, ethnicity, sexual orientation, gender identity, religion, culture, immigration, disability, language, literacy, health literacy, and socioeconomic status may influence the approach toward and success of FCR and a comprehensive FCC program.

Pediatric hospitalists should be able to:

• Model, teach, and integrate FCC principles throughout the inpatient continuum of care delivery, from admission and medication reconciliation to rounds, transitions of care, and discharge planning.
• Demonstrate basic skills in co-production specific to hospital medicine including those affecting policy (co-commissioning), clinical care and education (co-design, co-delivery), and quality/safety/research (co-assessment) within the local context.
• Coordinate, lead, and adapt FCR to meet specific patient needs, such as low English proficiency (LEP) children, adolescents, caregivers, and family members.
• Educate trainees about the core elements of FCC.
• Utilize strategies to include nursing staff and other ancillary staff (such as pharmacists, social workers, care coordinators, and others) in FCC.
• Utilize strategies to activate patients and the family/caregivers.
• Demonstrate skills in shared decision-making.
• Integrate the consistent use of universal health literacy precautions into daily practice.
• Demonstrate culturally competent communication skills.
• Engage interpreters effectively for LEP patients.
• Identify and abate potential implicit biases.
• Demonstrate skill in using information technology, including electronic medical record portals, to promote patient engagement.

Pediatric hospitalists should be able to:

• Recognize the role that implicit bias plays in impeding FCC.
• Reflect on the importance of being respectful of religious, cultural, and personal preferences in communication and involvement in care.
• Realize the patient and family/caregivers’ important role in promoting health and partnering in care decisions, both in the hospital and after discharge.
• Consider that all patients and the family/caregivers benefit from clear communication and universal health literacy precautions.
• Recognize the unique roles of the patient and the family/caregivers as “vigilant partners” in care and in patient safety, including in safety promotion and safety reporting.
• Appreciate the unique needs of underserved and marginalized communities, including LEP patients, Lesbian Gay Bisexual Transgender (LGBT) youth, religious and ethnic minorities, and immigrants.

In order to improve efficiency and quality within their organizations, pediatric hospitalists should:

• Lead, coordinate, or participate in interdisciplinary efforts to ensure effective patient and family engagement in hospital committees, research activities including prioritizing research questions, and hospital quality improvement initiatives.
• Work with hospital administration and other hospital leaders to create and sustain patient and family/caregiver involvement in safety reporting and safety promotion.
• Collaborate with graduate medical education leaders and other educators to create and sustain education around FCC for medical students, residents, faculty, and other healthcare providers.
• Collaborate with hospital administration and community leaders to engage patients and the family/caregivers in design and development of pediatric hospitals and healthcare systems, within local context.

Introduction

The National Academy of Medicine (NAM; previously the Institute of Medicine [IOM]), the American Academy of Pediatrics, and the Accreditation Council for Graduate Medical Education have all called for an increased emphasis on patient and family centered care. Family centered care (FCC) involves collaboration between patients, the family/caregivers, healthcare providers, and hospital administration to address the needs of individual patients, populations, and healthcare systems. It can inform policy, facility design, healthcare outcomes evaluation, and individual daily interactions. Thus, FCC is used to plan, deliver, and evaluate healthcare; conduct research; provide education; and improve healthcare quality. Pediatric hospitalists were first to lead national efforts to espouse family centered rounds (FCR), which is a cornerstone of a larger FCC program. Pediatric hospitalists promote high quality FCC by embedding it into daily interactions with patients and the family/caregivers, modeling and teaching it to trainees, and applying it to clinical care, medical education, research, quality improvement, hospital operations, and patient safety.

Pediatric hospitalists should be able to:

• Summarize the features of FCC, drawing upon existing frameworks from organizations such as the NAM, the Agency for Healthcare Research and Quality, and the Picker Institute.
• Describe the Picker Institute’s 8 Principles of Patient Centered Care: 1) respect for patient preferences, 2) coordination and integration of care, 3) information and education, 4) physical comfort, 5) emotional support, 6) involvement of family and friends, 7) continuity and transition, and 8) access to care.
• Summarize common components of a comprehensive healthcare system FCC program, attending to family involvement on advisory councils and boards, research committees, and electronic medical record groups, as well as healthcare system community partnerships and other relationships.
• Review the concept of “co-production”, which involves co-execution, co-planning, and civil discourse between patients, professionals, the healthcare system, and the community and society in order to achieve high-value healthcare and promote good health for all.
• Give examples of common best practices for FCR, including the family/caregivers speaking first, healthcare providers speaking in language understood by the family/caregivers, making plans and goal setting with the family/caregivers, asking open-ended questions, and assessing family/caregivers’ understanding.
• Describe the role of “patient activation” (patients attaining the confidence, knowledge, and skills to manage and maintain one’s health and healthcare needs) in promoting FCC in the inpatient setting.
• Discuss the steps of shared decision-making, including 1) seeking a patient’s participation, 2) helping a patient to explore and compare treatment options, 3) assessing a patient’s values and preferences, 4) reaching a decision with a patient, and 5) evaluating a patient’s decision.
• Discuss best practices of shared decision-making and give examples of where shared decision-making may be used inside and outside the setting of hospital rounds.
• Give examples of universal health literacy precautions use during communications with patients and the family/caregivers, including using plain language, minimizing unnecessary medical jargon, breaking down complex concepts into understandable pieces, bidirectional communication, and reinforcement with written or internet-based educational materials.
• Define implicit bias and review how unconscious, automatic stereotypes can affect understanding and decisions, leading to inconsistent management and healthcare outcome disparities.
• Discuss how differing experiences and views on race, ethnicity, sexual orientation, gender identity, religion, culture, immigration, disability, language, literacy, health literacy, and socioeconomic status may influence the approach toward and success of FCR and a comprehensive FCC program.

Pediatric hospitalists should be able to:

• Model, teach, and integrate FCC principles throughout the inpatient continuum of care delivery, from admission and medication reconciliation to rounds, transitions of care, and discharge planning.
• Demonstrate basic skills in co-production specific to hospital medicine including those affecting policy (co-commissioning), clinical care and education (co-design, co-delivery), and quality/safety/research (co-assessment) within the local context.
• Coordinate, lead, and adapt FCR to meet specific patient needs, such as low English proficiency (LEP) children, adolescents, caregivers, and family members.
• Educate trainees about the core elements of FCC.
• Utilize strategies to include nursing staff and other ancillary staff (such as pharmacists, social workers, care coordinators, and others) in FCC.
• Utilize strategies to activate patients and the family/caregivers.
• Demonstrate skills in shared decision-making.
• Integrate the consistent use of universal health literacy precautions into daily practice.
• Demonstrate culturally competent communication skills.
• Engage interpreters effectively for LEP patients.
• Identify and abate potential implicit biases.
• Demonstrate skill in using information technology, including electronic medical record portals, to promote patient engagement.

Pediatric hospitalists should be able to:

• Recognize the role that implicit bias plays in impeding FCC.
• Reflect on the importance of being respectful of religious, cultural, and personal preferences in communication and involvement in care.
• Realize the patient and family/caregivers’ important role in promoting health and partnering in care decisions, both in the hospital and after discharge.
• Consider that all patients and the family/caregivers benefit from clear communication and universal health literacy precautions.
• Recognize the unique roles of the patient and the family/caregivers as “vigilant partners” in care and in patient safety, including in safety promotion and safety reporting.
• Appreciate the unique needs of underserved and marginalized communities, including LEP patients, Lesbian Gay Bisexual Transgender (LGBT) youth, religious and ethnic minorities, and immigrants.

In order to improve efficiency and quality within their organizations, pediatric hospitalists should:

• Lead, coordinate, or participate in interdisciplinary efforts to ensure effective patient and family engagement in hospital committees, research activities including prioritizing research questions, and hospital quality improvement initiatives.
• Work with hospital administration and other hospital leaders to create and sustain patient and family/caregiver involvement in safety reporting and safety promotion.
• Collaborate with graduate medical education leaders and other educators to create and sustain education around FCC for medical students, residents, faculty, and other healthcare providers.
• Collaborate with hospital administration and community leaders to engage patients and the family/caregivers in design and development of pediatric hospitals and healthcare systems, within local context.

Introduction

The National Academy of Medicine (NAM; previously the Institute of Medicine [IOM]), the American Academy of Pediatrics, and the Accreditation Council for Graduate Medical Education have all called for an increased emphasis on patient and family centered care. Family centered care (FCC) involves collaboration between patients, the family/caregivers, healthcare providers, and hospital administration to address the needs of individual patients, populations, and healthcare systems. It can inform policy, facility design, healthcare outcomes evaluation, and individual daily interactions. Thus, FCC is used to plan, deliver, and evaluate healthcare; conduct research; provide education; and improve healthcare quality. Pediatric hospitalists were first to lead national efforts to espouse family centered rounds (FCR), which is a cornerstone of a larger FCC program. Pediatric hospitalists promote high quality FCC by embedding it into daily interactions with patients and the family/caregivers, modeling and teaching it to trainees, and applying it to clinical care, medical education, research, quality improvement, hospital operations, and patient safety.

Pediatric hospitalists should be able to:

• Summarize the features of FCC, drawing upon existing frameworks from organizations such as the NAM, the Agency for Healthcare Research and Quality, and the Picker Institute.
• Describe the Picker Institute’s 8 Principles of Patient Centered Care: 1) respect for patient preferences, 2) coordination and integration of care, 3) information and education, 4) physical comfort, 5) emotional support, 6) involvement of family and friends, 7) continuity and transition, and 8) access to care.
• Summarize common components of a comprehensive healthcare system FCC program, attending to family involvement on advisory councils and boards, research committees, and electronic medical record groups, as well as healthcare system community partnerships and other relationships.
• Review the concept of “co-production”, which involves co-execution, co-planning, and civil discourse between patients, professionals, the healthcare system, and the community and society in order to achieve high-value healthcare and promote good health for all.
• Give examples of common best practices for FCR, including the family/caregivers speaking first, healthcare providers speaking in language understood by the family/caregivers, making plans and goal setting with the family/caregivers, asking open-ended questions, and assessing family/caregivers’ understanding.
• Describe the role of “patient activation” (patients attaining the confidence, knowledge, and skills to manage and maintain one’s health and healthcare needs) in promoting FCC in the inpatient setting.
• Discuss the steps of shared decision-making, including 1) seeking a patient’s participation, 2) helping a patient to explore and compare treatment options, 3) assessing a patient’s values and preferences, 4) reaching a decision with a patient, and 5) evaluating a patient’s decision.
• Discuss best practices of shared decision-making and give examples of where shared decision-making may be used inside and outside the setting of hospital rounds.
• Give examples of universal health literacy precautions use during communications with patients and the family/caregivers, including using plain language, minimizing unnecessary medical jargon, breaking down complex concepts into understandable pieces, bidirectional communication, and reinforcement with written or internet-based educational materials.
• Define implicit bias and review how unconscious, automatic stereotypes can affect understanding and decisions, leading to inconsistent management and healthcare outcome disparities.
• Discuss how differing experiences and views on race, ethnicity, sexual orientation, gender identity, religion, culture, immigration, disability, language, literacy, health literacy, and socioeconomic status may influence the approach toward and success of FCR and a comprehensive FCC program.

Pediatric hospitalists should be able to:

• Model, teach, and integrate FCC principles throughout the inpatient continuum of care delivery, from admission and medication reconciliation to rounds, transitions of care, and discharge planning.
• Demonstrate basic skills in co-production specific to hospital medicine including those affecting policy (co-commissioning), clinical care and education (co-design, co-delivery), and quality/safety/research (co-assessment) within the local context.
• Coordinate, lead, and adapt FCR to meet specific patient needs, such as low English proficiency (LEP) children, adolescents, caregivers, and family members.
• Educate trainees about the core elements of FCC.
• Utilize strategies to include nursing staff and other ancillary staff (such as pharmacists, social workers, care coordinators, and others) in FCC.
• Utilize strategies to activate patients and the family/caregivers.
• Demonstrate skills in shared decision-making.
• Integrate the consistent use of universal health literacy precautions into daily practice.
• Demonstrate culturally competent communication skills.
• Engage interpreters effectively for LEP patients.
• Identify and abate potential implicit biases.
• Demonstrate skill in using information technology, including electronic medical record portals, to promote patient engagement.

Pediatric hospitalists should be able to:

• Recognize the role that implicit bias plays in impeding FCC.
• Reflect on the importance of being respectful of religious, cultural, and personal preferences in communication and involvement in care.
• Realize the patient and family/caregivers’ important role in promoting health and partnering in care decisions, both in the hospital and after discharge.
• Consider that all patients and the family/caregivers benefit from clear communication and universal health literacy precautions.
• Recognize the unique roles of the patient and the family/caregivers as “vigilant partners” in care and in patient safety, including in safety promotion and safety reporting.
• Appreciate the unique needs of underserved and marginalized communities, including LEP patients, Lesbian Gay Bisexual Transgender (LGBT) youth, religious and ethnic minorities, and immigrants.

In order to improve efficiency and quality within their organizations, pediatric hospitalists should:

• Lead, coordinate, or participate in interdisciplinary efforts to ensure effective patient and family engagement in hospital committees, research activities including prioritizing research questions, and hospital quality improvement initiatives.
• Work with hospital administration and other hospital leaders to create and sustain patient and family/caregiver involvement in safety reporting and safety promotion.
• Collaborate with graduate medical education leaders and other educators to create and sustain education around FCC for medical students, residents, faculty, and other healthcare providers.
• Collaborate with hospital administration and community leaders to engage patients and the family/caregivers in design and development of pediatric hospitals and healthcare systems, within local context.

Communication failures are a leading cause of sentinel events, the most serious adverse events that occur in hospitals.¹ Interventions to improve patient safety have focused on communication between healthcare providers.^2-4 Interventions focusing on communication between providers and families or other patient caregivers are under-studied.^5,6 Given their availability, proximity, historical knowledge, and motivation for a good outcome,⁷ families can play a vital role as “vigilant partners”⁸ in promoting hospital communication and safety.

In this month’s Journal of Hospital Medicine, Solan et al. conducted focus groups and interviews of 61 caregivers of hospitalized pediatric patients at 30 days after discharge to assess their perceptions of communication during hospitalization and discharge home.⁹ They identified several caregiver themes pertaining to communication between the inpatient medical team and families, communication challenges due to the teaching hospital environment, and communication between providers. Caregiver concerns included feeling out of the loop, excessive provider use of medical jargon, confusing messages on rounds, and inadequate communication between inpatient and outpatient providers.

The manuscript serves both to uncover family concerns that may be underappreciated by clinicians and suggest some potential solutions. For instance, caregivers can be apprehensive about whom to call for postdischarge advice because they are sometimes uncertain whether their outpatient providers have sufficient information about the hospitalization to properly advise them. The authors propose using photo “face sheets” to improve caregiver identification of healthcare provider roles, including families in hospital committees, improving transition communication between inpatient and outpatient healthcare providers through timely faxed discharge summaries and telephone calls, and informing families about such communications with their outpatient providers.

These are important suggestions. However, in order to move from promoting communication alone to promoting true partnership in care, there are additional steps that providers can take to fully engage families in hospital and discharge communications.

Meaningful family engagement in hospital communications—eg, during family-centered rounds (FCRs)—has been associated with improved patient safety and experience.^10-12 To further enhance family partnership in care, we would make the following 3 suggestions for hospitals and healthcare providers: (1) focus on health literacy in all communications with families, (2) work towards shared decision making (SDM), and (3) make discharges family-centered.

In order to partner with one another, families and healthcare providers need to speak a common language. A key way to ensure that families and providers speak a common language is for providers to espouse good health literacy principles. Health literacy is the “capacity to obtain, process, and understand basic health information and services to make appropriate health decisions.”¹³ Health literacy is dynamic, varying based on medical problem, provider, and healthcare system.¹⁴ Overall, only 12% of United States adults possess the health literacy skills required to navigate our complex healthcare system.^15,16 Stress, illness, and other factors can compromise the ability of even these individuals to process and utilize health information. Yet health literacy is routinely overestimated by providers.^17-19

To optimize communication with families, providers should use “universal health literacy precautions”¹⁶ with all patients, not just those believed to need extra assistance, in both verbal (eg, FCRs) and written communications (eg, discharge instructions).¹⁶ Providers should speak in plain, nonmedical language, be specific and concrete, and have families engage in “teach-back” (ie, state in their own words their understanding of the plan). They should focus on what families “need to know” rather than what is “good to know.” They should use simpler sentence structure and “chunk and check”²⁰ (ie, provide small, “bite-sized” pieces of information and check for understanding by using teach-back).²¹ In writing, they should use simpler sentence structure, bullet points, active statements, and be cognizant of reading level, medical jargon, and word choice (eg, “has a fever” instead of “febrile”). It is worth recognizing that even highly educated, highly literate families—not least of all those who are physicians and nurses themselves—can benefit from universal health literacy precautions because the ability to process and grasp information is dynamic and can be markedly lower than usual when faced with the illness of a loved one.

At a systematic level, medical schools, nursing schools, residency training programs, and continuing education should include health literacy training in their curricula. While learning to speak the language of medicine is an important part of medical education, the next step is learning to “unspeak” it, a challenging but important charge to promote partnership.

SDM is the process by which providers and patients make decisions together by balancing clinical evidence with patient preferences and values.²² However, despite providers believing they are engaging in SDM,^23,24 families report they are often not as involved in SDM as they would like.^24-26 Indeed, most hospital communications with families, including FCRs and discharge instructions, typically emphasize information sharing, not SDM. SDM tends to be more commonly applied in outpatient settings.²⁷ To encourage SDM in the hospital setting, patients and families should not only understand communication during FCRs and at discharge but should be encouraged to be active participants in developing care plans,²⁶ no matter how minor the decisions involved.²⁸ SDM can be applied to a variety of discussions, both during hospitalization (eg, initiation of antibiotics, transition from intravenous to oral medications, pursuing imaging) and at discharge (eg, assessing discharge readiness, deciding duration of therapy, formulating follow-up recommendations). Providers will benefit from incorporating information from personal and medical histories that only families possess, resulting in more informed and potentially safer care plans that may be more likely to fit into the family’s life at home. SDM can also ensure patient and family “buy-in” and increase the likelihood of compliance with the shared plan.

Discharge processes often involve multiple redundancies and parallel processes that fail to actively involve families or promote transparency.²⁹ Discharge summaries are typically written in medical jargon and intended for the outpatient provider (who may not receive them in a timely fashion), not the family.^30-32 Separate discharge instructions are often provided to families without sufficient attention to health literacy, contingency planning, or individualization (eg, a generic asthma fact sheet).³⁰ Outpatient providers are not always contacted directly about the hospitalization, nor are families always informed when providers are contacted, as Solan et al. describe.

Providers can apply lessons from FCRs to discharge processes, pursuing a similar family-centered, interprofessional approach promoting partnership and transparency. Just as providers engage families during discussions on FCRs, they can engage families in discharge conversations with outpatient providers and nursing colleagues. Indeed, Berry et al. propose a discharge framework that emphasizes involvement of and dialogue between patients, families, and providers as they systematically develop and assess plans for discharge and postdischarge care.³³ To accomplish this, inpatient providers can copy families on discharge summaries and other correspondence with outpatient providers (eg, through secure emails or open-source notes such as OpenNotes^34-36). Moreover, particularly for complex discharges, inpatient providers can call outpatient providers in the family’s presence or invite outpatient providers to join—via telephone or videoconference—day-of-discharge FCRs or discharge huddles. Such efforts require logistical and pragmatic considerations, as well as culture change, but are not insurmountable and may help address many family concerns around peridischarge communication and care. Such efforts may also promote accountability on the part of families and providers alike, thereby ensuring that families are truly engaged as vigilant partners in care.

As one of us (SC) reflected once when considering her experience navigating healthcare as a parent of 2 children with cystic fibrosis, “We have to make it easier for families to be a true part of their children’s care. When patients and families are true members of the medical team, care is more informed, more targeted, and more safe for everyone.”

Disclosure: Dr. Landrigan has consulted with and holds equity in the I-PASS Patient Safety Institute, a company that seeks to train institutions in best handoff practices and aid in their implementation. Dr. Landrigan is supported in part by the Children’s Hospital Association for his work as an Executive Council member of the Pediatric Research in Inpatient Settings (PRIS) network. Dr. Landrigan has also served as a paid consultant to Virgin Pulse to help develop a Sleep and Health Program. In addition, Dr. Landrigan has received monetary awards, honoraria, and travel reimbursement from multiple academic and professional organizations for teaching and consulting on sleep deprivation, physician performance, handoffs, and safety and has served as an expert witness in cases regarding patient safety and sleep deprivation.

Communication failures are a leading cause of sentinel events, the most serious adverse events that occur in hospitals.¹ Interventions to improve patient safety have focused on communication between healthcare providers.^2-4 Interventions focusing on communication between providers and families or other patient caregivers are under-studied.^5,6 Given their availability, proximity, historical knowledge, and motivation for a good outcome,⁷ families can play a vital role as “vigilant partners”⁸ in promoting hospital communication and safety.

In this month’s Journal of Hospital Medicine, Solan et al. conducted focus groups and interviews of 61 caregivers of hospitalized pediatric patients at 30 days after discharge to assess their perceptions of communication during hospitalization and discharge home.⁹ They identified several caregiver themes pertaining to communication between the inpatient medical team and families, communication challenges due to the teaching hospital environment, and communication between providers. Caregiver concerns included feeling out of the loop, excessive provider use of medical jargon, confusing messages on rounds, and inadequate communication between inpatient and outpatient providers.

The manuscript serves both to uncover family concerns that may be underappreciated by clinicians and suggest some potential solutions. For instance, caregivers can be apprehensive about whom to call for postdischarge advice because they are sometimes uncertain whether their outpatient providers have sufficient information about the hospitalization to properly advise them. The authors propose using photo “face sheets” to improve caregiver identification of healthcare provider roles, including families in hospital committees, improving transition communication between inpatient and outpatient healthcare providers through timely faxed discharge summaries and telephone calls, and informing families about such communications with their outpatient providers.

These are important suggestions. However, in order to move from promoting communication alone to promoting true partnership in care, there are additional steps that providers can take to fully engage families in hospital and discharge communications.

Meaningful family engagement in hospital communications—eg, during family-centered rounds (FCRs)—has been associated with improved patient safety and experience.^10-12 To further enhance family partnership in care, we would make the following 3 suggestions for hospitals and healthcare providers: (1) focus on health literacy in all communications with families, (2) work towards shared decision making (SDM), and (3) make discharges family-centered.

In order to partner with one another, families and healthcare providers need to speak a common language. A key way to ensure that families and providers speak a common language is for providers to espouse good health literacy principles. Health literacy is the “capacity to obtain, process, and understand basic health information and services to make appropriate health decisions.”¹³ Health literacy is dynamic, varying based on medical problem, provider, and healthcare system.¹⁴ Overall, only 12% of United States adults possess the health literacy skills required to navigate our complex healthcare system.^15,16 Stress, illness, and other factors can compromise the ability of even these individuals to process and utilize health information. Yet health literacy is routinely overestimated by providers.^17-19

To optimize communication with families, providers should use “universal health literacy precautions”¹⁶ with all patients, not just those believed to need extra assistance, in both verbal (eg, FCRs) and written communications (eg, discharge instructions).¹⁶ Providers should speak in plain, nonmedical language, be specific and concrete, and have families engage in “teach-back” (ie, state in their own words their understanding of the plan). They should focus on what families “need to know” rather than what is “good to know.” They should use simpler sentence structure and “chunk and check”²⁰ (ie, provide small, “bite-sized” pieces of information and check for understanding by using teach-back).²¹ In writing, they should use simpler sentence structure, bullet points, active statements, and be cognizant of reading level, medical jargon, and word choice (eg, “has a fever” instead of “febrile”). It is worth recognizing that even highly educated, highly literate families—not least of all those who are physicians and nurses themselves—can benefit from universal health literacy precautions because the ability to process and grasp information is dynamic and can be markedly lower than usual when faced with the illness of a loved one.

At a systematic level, medical schools, nursing schools, residency training programs, and continuing education should include health literacy training in their curricula. While learning to speak the language of medicine is an important part of medical education, the next step is learning to “unspeak” it, a challenging but important charge to promote partnership.

SDM is the process by which providers and patients make decisions together by balancing clinical evidence with patient preferences and values.²² However, despite providers believing they are engaging in SDM,^23,24 families report they are often not as involved in SDM as they would like.^24-26 Indeed, most hospital communications with families, including FCRs and discharge instructions, typically emphasize information sharing, not SDM. SDM tends to be more commonly applied in outpatient settings.²⁷ To encourage SDM in the hospital setting, patients and families should not only understand communication during FCRs and at discharge but should be encouraged to be active participants in developing care plans,²⁶ no matter how minor the decisions involved.²⁸ SDM can be applied to a variety of discussions, both during hospitalization (eg, initiation of antibiotics, transition from intravenous to oral medications, pursuing imaging) and at discharge (eg, assessing discharge readiness, deciding duration of therapy, formulating follow-up recommendations). Providers will benefit from incorporating information from personal and medical histories that only families possess, resulting in more informed and potentially safer care plans that may be more likely to fit into the family’s life at home. SDM can also ensure patient and family “buy-in” and increase the likelihood of compliance with the shared plan.

Discharge processes often involve multiple redundancies and parallel processes that fail to actively involve families or promote transparency.²⁹ Discharge summaries are typically written in medical jargon and intended for the outpatient provider (who may not receive them in a timely fashion), not the family.^30-32 Separate discharge instructions are often provided to families without sufficient attention to health literacy, contingency planning, or individualization (eg, a generic asthma fact sheet).³⁰ Outpatient providers are not always contacted directly about the hospitalization, nor are families always informed when providers are contacted, as Solan et al. describe.

Providers can apply lessons from FCRs to discharge processes, pursuing a similar family-centered, interprofessional approach promoting partnership and transparency. Just as providers engage families during discussions on FCRs, they can engage families in discharge conversations with outpatient providers and nursing colleagues. Indeed, Berry et al. propose a discharge framework that emphasizes involvement of and dialogue between patients, families, and providers as they systematically develop and assess plans for discharge and postdischarge care.³³ To accomplish this, inpatient providers can copy families on discharge summaries and other correspondence with outpatient providers (eg, through secure emails or open-source notes such as OpenNotes^34-36). Moreover, particularly for complex discharges, inpatient providers can call outpatient providers in the family’s presence or invite outpatient providers to join—via telephone or videoconference—day-of-discharge FCRs or discharge huddles. Such efforts require logistical and pragmatic considerations, as well as culture change, but are not insurmountable and may help address many family concerns around peridischarge communication and care. Such efforts may also promote accountability on the part of families and providers alike, thereby ensuring that families are truly engaged as vigilant partners in care.

As one of us (SC) reflected once when considering her experience navigating healthcare as a parent of 2 children with cystic fibrosis, “We have to make it easier for families to be a true part of their children’s care. When patients and families are true members of the medical team, care is more informed, more targeted, and more safe for everyone.”

Disclosure: Dr. Landrigan has consulted with and holds equity in the I-PASS Patient Safety Institute, a company that seeks to train institutions in best handoff practices and aid in their implementation. Dr. Landrigan is supported in part by the Children’s Hospital Association for his work as an Executive Council member of the Pediatric Research in Inpatient Settings (PRIS) network. Dr. Landrigan has also served as a paid consultant to Virgin Pulse to help develop a Sleep and Health Program. In addition, Dr. Landrigan has received monetary awards, honoraria, and travel reimbursement from multiple academic and professional organizations for teaching and consulting on sleep deprivation, physician performance, handoffs, and safety and has served as an expert witness in cases regarding patient safety and sleep deprivation.

Communication failures are a leading cause of sentinel events, the most serious adverse events that occur in hospitals.¹ Interventions to improve patient safety have focused on communication between healthcare providers.^2-4 Interventions focusing on communication between providers and families or other patient caregivers are under-studied.^5,6 Given their availability, proximity, historical knowledge, and motivation for a good outcome,⁷ families can play a vital role as “vigilant partners”⁸ in promoting hospital communication and safety.

In this month’s Journal of Hospital Medicine, Solan et al. conducted focus groups and interviews of 61 caregivers of hospitalized pediatric patients at 30 days after discharge to assess their perceptions of communication during hospitalization and discharge home.⁹ They identified several caregiver themes pertaining to communication between the inpatient medical team and families, communication challenges due to the teaching hospital environment, and communication between providers. Caregiver concerns included feeling out of the loop, excessive provider use of medical jargon, confusing messages on rounds, and inadequate communication between inpatient and outpatient providers.

The manuscript serves both to uncover family concerns that may be underappreciated by clinicians and suggest some potential solutions. For instance, caregivers can be apprehensive about whom to call for postdischarge advice because they are sometimes uncertain whether their outpatient providers have sufficient information about the hospitalization to properly advise them. The authors propose using photo “face sheets” to improve caregiver identification of healthcare provider roles, including families in hospital committees, improving transition communication between inpatient and outpatient healthcare providers through timely faxed discharge summaries and telephone calls, and informing families about such communications with their outpatient providers.

These are important suggestions. However, in order to move from promoting communication alone to promoting true partnership in care, there are additional steps that providers can take to fully engage families in hospital and discharge communications.

Meaningful family engagement in hospital communications—eg, during family-centered rounds (FCRs)—has been associated with improved patient safety and experience.^10-12 To further enhance family partnership in care, we would make the following 3 suggestions for hospitals and healthcare providers: (1) focus on health literacy in all communications with families, (2) work towards shared decision making (SDM), and (3) make discharges family-centered.

In order to partner with one another, families and healthcare providers need to speak a common language. A key way to ensure that families and providers speak a common language is for providers to espouse good health literacy principles. Health literacy is the “capacity to obtain, process, and understand basic health information and services to make appropriate health decisions.”¹³ Health literacy is dynamic, varying based on medical problem, provider, and healthcare system.¹⁴ Overall, only 12% of United States adults possess the health literacy skills required to navigate our complex healthcare system.^15,16 Stress, illness, and other factors can compromise the ability of even these individuals to process and utilize health information. Yet health literacy is routinely overestimated by providers.^17-19

To optimize communication with families, providers should use “universal health literacy precautions”¹⁶ with all patients, not just those believed to need extra assistance, in both verbal (eg, FCRs) and written communications (eg, discharge instructions).¹⁶ Providers should speak in plain, nonmedical language, be specific and concrete, and have families engage in “teach-back” (ie, state in their own words their understanding of the plan). They should focus on what families “need to know” rather than what is “good to know.” They should use simpler sentence structure and “chunk and check”²⁰ (ie, provide small, “bite-sized” pieces of information and check for understanding by using teach-back).²¹ In writing, they should use simpler sentence structure, bullet points, active statements, and be cognizant of reading level, medical jargon, and word choice (eg, “has a fever” instead of “febrile”). It is worth recognizing that even highly educated, highly literate families—not least of all those who are physicians and nurses themselves—can benefit from universal health literacy precautions because the ability to process and grasp information is dynamic and can be markedly lower than usual when faced with the illness of a loved one.

At a systematic level, medical schools, nursing schools, residency training programs, and continuing education should include health literacy training in their curricula. While learning to speak the language of medicine is an important part of medical education, the next step is learning to “unspeak” it, a challenging but important charge to promote partnership.

SDM is the process by which providers and patients make decisions together by balancing clinical evidence with patient preferences and values.²² However, despite providers believing they are engaging in SDM,^23,24 families report they are often not as involved in SDM as they would like.^24-26 Indeed, most hospital communications with families, including FCRs and discharge instructions, typically emphasize information sharing, not SDM. SDM tends to be more commonly applied in outpatient settings.²⁷ To encourage SDM in the hospital setting, patients and families should not only understand communication during FCRs and at discharge but should be encouraged to be active participants in developing care plans,²⁶ no matter how minor the decisions involved.²⁸ SDM can be applied to a variety of discussions, both during hospitalization (eg, initiation of antibiotics, transition from intravenous to oral medications, pursuing imaging) and at discharge (eg, assessing discharge readiness, deciding duration of therapy, formulating follow-up recommendations). Providers will benefit from incorporating information from personal and medical histories that only families possess, resulting in more informed and potentially safer care plans that may be more likely to fit into the family’s life at home. SDM can also ensure patient and family “buy-in” and increase the likelihood of compliance with the shared plan.

Discharge processes often involve multiple redundancies and parallel processes that fail to actively involve families or promote transparency.²⁹ Discharge summaries are typically written in medical jargon and intended for the outpatient provider (who may not receive them in a timely fashion), not the family.^30-32 Separate discharge instructions are often provided to families without sufficient attention to health literacy, contingency planning, or individualization (eg, a generic asthma fact sheet).³⁰ Outpatient providers are not always contacted directly about the hospitalization, nor are families always informed when providers are contacted, as Solan et al. describe.

Providers can apply lessons from FCRs to discharge processes, pursuing a similar family-centered, interprofessional approach promoting partnership and transparency. Just as providers engage families during discussions on FCRs, they can engage families in discharge conversations with outpatient providers and nursing colleagues. Indeed, Berry et al. propose a discharge framework that emphasizes involvement of and dialogue between patients, families, and providers as they systematically develop and assess plans for discharge and postdischarge care.³³ To accomplish this, inpatient providers can copy families on discharge summaries and other correspondence with outpatient providers (eg, through secure emails or open-source notes such as OpenNotes^34-36). Moreover, particularly for complex discharges, inpatient providers can call outpatient providers in the family’s presence or invite outpatient providers to join—via telephone or videoconference—day-of-discharge FCRs or discharge huddles. Such efforts require logistical and pragmatic considerations, as well as culture change, but are not insurmountable and may help address many family concerns around peridischarge communication and care. Such efforts may also promote accountability on the part of families and providers alike, thereby ensuring that families are truly engaged as vigilant partners in care.

As one of us (SC) reflected once when considering her experience navigating healthcare as a parent of 2 children with cystic fibrosis, “We have to make it easier for families to be a true part of their children’s care. When patients and families are true members of the medical team, care is more informed, more targeted, and more safe for everyone.”

Disclosure: Dr. Landrigan has consulted with and holds equity in the I-PASS Patient Safety Institute, a company that seeks to train institutions in best handoff practices and aid in their implementation. Dr. Landrigan is supported in part by the Children’s Hospital Association for his work as an Executive Council member of the Pediatric Research in Inpatient Settings (PRIS) network. Dr. Landrigan has also served as a paid consultant to Virgin Pulse to help develop a Sleep and Health Program. In addition, Dr. Landrigan has received monetary awards, honoraria, and travel reimbursement from multiple academic and professional organizations for teaching and consulting on sleep deprivation, physician performance, handoffs, and safety and has served as an expert witness in cases regarding patient safety and sleep deprivation.