In March 2020, the coronavirus disease 2019 (COVID-19) pandemic was starting to take hold across the United States, turning routine patient care into potentially life-threatening encounters between patients and health care providers. Hospitals quickly enacted policies limiting visitors and requiring social distancing and personal protective equipment (PPE) on all personnel. Although such interventions are necessary to promote safety, the impact on traditional means of communication and empathy are significant. This narrative describes the impact of early pandemic fears and associated policies on the interaction between a parent and provider in the setting of a new pediatric cancer diagnosis.
Before I was the parent of a patient with cancer, I was a clinical psychologist. I spent most of my career embedded within pediatric medical care teams, first in oncology and then in palliative care. As such, I have participated in hundreds of conversations in which bad news about a child was given to a family. Yet despite my training and my professional experiences, I felt totally unprepared to be the parent on the receiving end of bad news.
Dr Schiltz and I have worked closely together over the past 3 years as members of the pediatric palliative care team and through Dr Schiltz’s role as a pediatric critical care physician. The day before my daughter was diagnosed with cancer, we were both on hospital service and saw a young adult patient and his family together to whom we introduced end-of-life planning. During our debrief, I remember discussing how strange it had felt discussing such an emotional topic while wearing a mask and how I had fought my natural instinct to put my hand on the young man’s arm.
In my role as a pediatric critical care physician, I have had many conversations with parents about serious illness, devastating injuries, difficult symptoms, and the big “C” word. Even in times when isolation gear is required near a patient, we often can go to another room to be comfortable without gowns and gloves and masks and join parents, siblings, and extended family together to think about navigating life forever changed by a medical crisis in a child. The COVID-19 pandemic changed everything about these serious conversations. Our need to be 6 feet apart created an inability to extend a comforting hand or gentle touch to offer support. The isolation gowns and shields become noisy and distracting. The masks cover facial expressions: the quivering chin, the biting of a tongue, or the mouth about to speak but words that struggle to come out. The tools I routinely employ to communicate empathically were lost in the PPE covering us all.
Your child has cancer.
It is leukemia. If she must have cancer, this is the good one to have.
That bump on her head you have been calling the pediatrician about – it is not from her falling out of the crib while trying to hug her sister. It is cancer too.
There was an incidental finding on the spine MRI. It looks like there is a tumor in her abdomen.
Pathology confirmed a second cancer. I can’t believe this, but we are sure. She has two different cancers.
These statements were made to me over the course of 7 days. Each of these shook me to my core. Some resulted in my immediate tears. Others were met with numbness, with the tears coming late at night as I looked at my sleeping child, my three-year-old daughter. All of these devastating statements, each life-changing for my child, myself, and our family, were delivered by a clinician whose face was hidden by a mask. At what each time seemed to be the worst moment of my life, all I could see were someone’s eyes obscured through a face shield and their yellow mask.
Masks have been an essential tool in slowing the spread of COVID-19. They have kept my immunocompromised child safe and have protected the staff that have cared so lovingly for my daughter and my family. Yet it is hard to deny that although this protective gear serves as a barrier against germs and viruses, it was also a barrier between me and whomever I was talking to. It is hard to describe how lonely this made me feel. I think this was a feeling my child shared. When a policy change mandated that parents be masked 24/7 while in the hospital, my child was furious. She would rip the mask off my face and, if it was a paper mask, would pull off the strings so it could not be worn again. “I need to see my mommy” she told me, along with “I need kisses to make me feel better and you can’t kiss me with a mask.” At 3, she could not understand the vital role the mask played in protecting her; she just saw it as a scratchy piece of material that was coming between her and me. This broke my heart and made me want to defy the rules and refuse to wear a mask, something that I would not do. So instead of trying to explain, I made masks fun. With help from child life, physical therapy, and occupational therapy, we incorporated masks into art projects, relay races, and other forms of play. By the end of the hospitalization, masks had become part of our daily routine, and the only time she took mine off was for snuggles in her bed or kisses.
I was not prepared for the page I received. “Can you please come to our room? I asked the team to put in a palliative care consult.” As I donned my appropriate PPE, I came into the room. My colleague, who could make handling leukemia seem easy, was completely broken down, crying, and had her face in her hands. Her husband had a look of pure terror and disbelief in his eyes. “She has two cancers.”
My mask covered my expression. Perhaps the only way she could have known just how devastated I was to learn of this news was by the tears welling up in my eyes. My natural response was to wrap my arms around my friend and tell her everything would be okay. “I will help you, I will fix her, I will do everything in my power to make this go away.” But how do I show you when my words are muffled by the mask? How can I softly share my words of condolence when I am struggling to catch enough air myself through the 3 layers of fabric? How does anyone break this kind of awful news with personal protective gear creating a barrier between doctor and patient?
Everything about that interaction felt wrong. The empathy I wanted to show was seemingly contained behind the mask I had to wear. Patients cannot see the doctor’s expression behind the mask, impairing rapport. “It is difficult for the doctor to express empathy to the patient’s sufferings without showing his/her expressions.”1 Empathy is one of the most important attributes parents receiving bad news desire.2 Yet research has demonstrated that mask wearing was associated with a significant and negative effect on the perception of physician’s empathy and thereby impacted trust, communication, and therapeutic alliance.3 Nonverbal communication imparts much more than ever our words can.4 As I stood there in my head-to-toe PPE, I could fully appreciate precisely how difficult it is to show empathy, compassion, and trust as I gazed into the eyes of my colleague and fellow mother.
I did not realize the power of touch until COVID-19 took it from me at the time I needed it most. As the waves of shock radiated through me after each piece of bad news, I would instinctively reach for my husband or someone to hold my hand and tell me it would be okay. But rarely was anyone there. Not because he or others did not want to be present but because they were not allowed (only one parent could be with a minor child). As I struggled to be strong in front of my daughter, I barely stayed afloat in the tidal wave of bad news given to me on my own.
Sitting with my daughter in that hospital room, I craved the casual touch, the friendly hug from colleagues dropping in or even a smile from a familiar face, but COVID-19 protocols discouraged these otherwise normal interactions. At the time, I had never felt more alone or isolated. Yet as I look back, my most vivid recollections are of the 3 clinicians who saw my fear and loneliness and with my permission, sat with me and offered a noisy isolation gown hug. These simple acts of kindness, which would have been considered routine just weeks before, brought recognition to my suffering in a way that words could not. And for those moments, it eased my suffering. I will be forever grateful to these clinicians for their acts of kindness.
As time went on, we experienced virtual encounters with providers who were not present in the hospital. Phone calls, telemedicine visits, and even iPads brought into the room from the staff became the norm. The physical distance often was far more than the suggested 6 feet or replaced entirely with pixels on a screen. Strangely enough, those who were present regularly offered an unexpected source of support: child life teams, housekeeping staff, and nursing aides, people who had to bravely face the possibility of contracting COVID-19 with each patient encounter. I would like to think that we provided comfort to each other in human connection by simply being there.
In the world of pediatric oncology, parents suffer seeing their child’s normalcy turn into hospital stays, surgeries, pokes, prodding, and uncertainty. There are no words to convey the message of support better than the warmth of a consoling hand or the comfort of arms wrapped around the parent standing desolate on a collapsing world. Being 6 feet apart and covered in a force field of awkwardly noisy disposable plastic, our human connection may become a bit muted, distracted by the guidelines designed to protect one another from possible infection.
Yet in our need to be an empathic physician, how does one reconcile the need to also protect oneself and others? If I extend a hug to this mother who needs support, could I be putting her and her child at risk? Could I be putting my other patients at risk? What if she gave COVID-19 to me? What about my family? The uncertainty of cancer for this child juxtaposed with the uncertainty of the pandemic made for a constant conflict of how best to serve my duties as a physician while also protecting myself and everyone else.
One child, two cancers, both at the same time. One mother scared to death for what her child will endure. While donned in full PPE (mask, face shield, gown, gloves), I made the radical decision to hug my colleague. A typically benign act that had become a risky interaction in the COVID-19 pandemic. The only way I could fully express compassion, empathy, and support was through this gowned and gloved hug, a physical connection with a parent on the worst day of her life.
Mommy, do I still have a sister?
Out of all the horrible things I heard during that first hospitalization, this question, uttered by my child, the patient’s twin sister, crushed me the most. Like most other hospitals, ours restricted visits from friends and family. Except for extraordinary circumstances, hospital policy allowed only one parent at the bedside and prohibited siblings from visiting. This separation was incredibly hard on our family. My daughters had shared a room since they were born and had never spent more than a night apart. At home, her twin started having nightmares and would wake up calling for her sister, sobbing when she was not there. COVID-19 also separated my husband and me during the hardest months of our lives. We saw each other for a few minutes in passing, as we met outside the hospital to switch off, with one child upstairs in the hospital and one in the car.
My colleagues from the palliative care team became my lifeline, my family in the hospital. Although my own family was unable to be at our sides, they weathered the storm beside me, managing my emotions and my daughter’s pain and symptoms, celebrating good days, and sharing our struggles on bad ones. They were there with us, even when pandemic procedures resulted in a short-staffed and under-resourced team. In some ways, the isolation that the pandemic created in our lives was lessened by the providers who continued to show up despite the risks, the staffing constraints, and the emotional toll COVID-19 was taking on us all.
Most of us can identify with the feelings of isolation that occurred during the pandemic: we stayed home, we did not gather in large groups, and we connected electronically when able. However, for families with hospitalized loved ones, visitor restrictions compounded their isolation and often seemed to traumatize them. In pediatrics, children were regularly separated from their siblings, grandparents, and friends, essential parts of family and community that often are part of the proverbial village that helps raise a child.
Visitor restriction policies physically tore this beautiful family in half, magnified by the unique connection twin sisters share. These 2 girls who shared a womb for 9 months now had to resort to video calls and crayon drawings for months of inpatient cancer treatment. I often reflect on how much pain and distressing symptoms my patient endured because of the lack of being with her twin sister. How much opioid did I prescribe to capture the pain of her separation from her family?
These policies also made supporting my colleague hard, limiting our interactions often to a text message or a quick drop-off of food or drinks. I could not offer a coffee break, a cafeteria dinner, or even just time to sit together and talk through the emotional roller coaster of cancer treatment. Being 6 feet apart made it hard to simply “be there.”
Over the ensuing weeks, Molly began her treatment. She was subject to nasal swabs for coronavirus regularly and spent most of the time isolated to her room, after a swab had detected rhinovirus. For 35 days, every face she saw, besides her dad and me, was wearing a mask. Somehow, we all got used to it.
Our team also got used to it. Normally, we hug, console, and touch those who hurt and grieve. We sit with them and be present, even in silence, when words do not convey the messages from our hearts. We gather and support and watch chemotherapy destroy mutant cells trying to take over what is not theirs. But in the interest of stopping the raging virus from taking yet another victim, the art of empathic doctoring had to be totally transformed. Yet what we believe makes us good at caring was made impossible by pandemic procedures, and that left us with a heavy moral wound.
Although some of the restrictions policies enacted early during the COVID-19 pandemic have been lifted in recent months, many will likely stay in place for the foreseeable future, requiring adaptation on the part of pediatric patients, their parents and family, and health care providers. As we reflect on our experiences over the past 18 months, we offer the following suggestions to other families and health care providers who are now dealing with the same barriers to communication we experienced.
My child, like most young children, learns through play. So she and I spent hours “playing” with masks. We watched the Sesame Street video5 on wearing masks and made special masks for each of her stuffed animals. Masks became hammocks for her dolls and part of her collages. When she asked why we had to wear masks, we learned about germs through easy science experiments and put rubber ducks in the sink to encourage hand-washing. We used sticker charts to reward positive masking behaviors. By making masks an object of fun and play, they went from being scary and bad to a more neutral (or even positive) part of her environment. Her care team often joined in the fun, thus allowing her experience to transfer to others as well.
Health care providers should continue to follow policy regarding social distancing and physical contact, despite my own personal experience of what those few gestures meant to me. However, many providers have improvised with comments such as “this is where I would normally offer a hug” or even give an “air hug” from 6 feet away. Although these statements and gestures are not the same as the physical touch, they convey a similar message: that my distress and/or the distress of the situation is recognized and valid, and they want to alleviate it. This recognition and subsequent action, although not ideal, is still powerful.
My daughter has spent more days in the hospital than at home since her cancer diagnosis, and our family has tried many strategies to stay connected, with some more successful than others. Although video calls are helpful, those became challenging because of differing schedules, hospital providers and rounds occurring at inconsistent times, mealtimes, and bedtimes. We had more success with structured video calls, in which we would read a story together (each child would have a copy of the book) or do the same art project (one at home, one at the hospital). To stay connected as a family, we all had a small colored bracelet with a heart on it. When one of the girls was missing her sister or the other parent, we would talk about sending a kiss or love to them from the bracelet. We also read the story A Kissing Hand for Chester Raccoon,6 which reinforced the message of connection even while apart.
In all honesty, the best thing we did was let go of expectations about what this was supposed to look like. We acknowledged to each other and to our children that this was hard and certainly not fair; we did not like being apart either, but this is what we had to do to ensure that our family would continue to be together for years to come. This gave us all permission to be upset and then move forward to face another day.
The basics of communication are essential when providing bad news to a parent of a child with cancer7 ; however, amid the confines of mask wearing, social distancing and other isolation procedures during the pandemic, certain aspects of communication are worth emphasizing. It is important to set the stage so as to minimize any distractions possible, given that the facial expressions are limited to the eyes and eyebrows, the mask can muffle the sounds of the voice (particularly inflections and times when a softer tone would be appropriate), and isolation gowns can be noisy. The environment should be quiet and limited to essential staff members. If technology is being used, a reliable connection should be tested before the gathering. Keen observation of nonverbal expression and cues of emotional response (such as tears welling up in the eyes, frequent shifting of the body, changes in breathing pattern, change in tone of voice, frequent swallowing, or development of skin perfusion changes) becomes an important communication skill. The provider can state their observation and inquire whether their assessment of emotional expression through nonverbal means is accurate. Responding to these subtle expressions can ensure communication is accurate and facilitate the development of rapport between provider and the patient and family.
While maintaining appropriate distance, it is often hard to demonstrate empathy as one would normally do, such as sitting close by or offering physical touch. However, empathy can be demonstrated verbally (eg, phrases stating what one would typically do: “I would normally offer my hand in condolence”) and with nonverbal communication with intentional practices (eg, eye and eyebrow manifestations of emotion, purposeful eye contact) that can be done while in PPE and masks. In addition, connection and empathy can be further demonstrated by repeated visits both in person and virtually. Virtual connections to patients in the hospital are particularly critical for the safety of providers and to maintain appropriate levels of care to patients. The power of presence can often fill gaps created by pandemic isolation when done properly and safely. Hospitals should invest in technologies that bring virtual visitation directly to the bedside in high-definition video and sound.
It is our collective hope, parent and provider, that the lessons learned from the COVID-19 pandemic will result in opportunities for health care providers to develop strategies that keep people safe from communicable disease while also being supported and cared for during serious illness. Enhanced technology, telehealth visits, and increased focus on communication techniques are immediate opportunities to continue to support patients, families, and providers in optimal care of children with serious illness.
Drs McCarthy and Schiltz conceptualized and drafted, reviewed, and revised the manuscript; and all authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.
FUNDING: Dr McCarthy is supported by the Agency for Healthcare Research and Quality (AHRQ) (K12HS026379) and the Patient-Centered Outcomes Research Institute (PCORI) (K12HS026379). The content is solely the responsibility of the authors and does not necessarily represent the official views of the AHRQ, the PCORI, or the Minnesota Learning Health System Mentored Career Development Program. The AHRQ and the PCORI had no role in this article.
POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.