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.
CHANGING CIRCUMSTANCES OF CARE
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.
CORE VALUES DURING COVID-19
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.
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.