Masks, Empathy, and a Pediatric Cancer Diagnosis During COVID-19
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Masks, Empathy, and a Pediatric
Cancer Diagnosis During COVID-19
Sarah R. Brand McCarthy, PHD, MPH, Brenda Schiltz, MD, MA
In March 2020, the coronavirus daughter was diagnosed with
disease 2019 (COVID-19) pandemic cancer, we were both on hospital
was starting to take hold across the service and saw a young adult
United States, turning routine patient patient and his family together to
care into potentially life-threatening whom we introduced end-of-life
encounters between patients and planning. During our debrief, I
health care providers. Hospitals remember discussing how strange it
quickly enacted policies limiting had felt discussing such an
visitors and requiring social emotional topic while wearing a
distancing and personal protective mask and how I had fought my
equipment (PPE) on all personnel. natural instinct to put my hand on
Although such interventions are the young man’s arm.
necessary to promote safety, the
impact on traditional means of
CLINICIAN PERSPECTIVE
communication and empathy are
significant. This narrative describes In my role as a pediatric critical care
Mayo Clinic, Rochester, Minnesota
the impact of early pandemic fears physician, I have had many
and associated policies on the conversations with parents about Drs McCarthy and Schiltz conceptualized and drafted,
reviewed, and revised the manuscript; and all authors
interaction between a parent and serious illness, devastating injuries, approved the final manuscript as submitted and agree
provider in the setting of a new difficult symptoms, and the big “C” to be accountable for all aspects of the work.
word. Even in times when isolation DOI: https://doi.org/10.1542/peds.2021-051696
pediatric cancer diagnosis.
gear is required near a patient, we Accepted for publication July 28, 2021
PARENT PERSPECTIVE often can go to another room to be Address correspondence to Sarah R. Brand McCarthy, PHD,
MPH, Department of Psychiatry and Psychology, Mayo
comfortable without gowns and Clinic, 200 First St SW, Rochester, MN 55905. E-mail:
Before I was the parent of a patient
gloves and masks and join parents, mccarthy.sarah@mayo.edu
with cancer, I was a clinical
siblings, and extended family PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online,
psychologist. I spent most of my 1098-4275).
together to think about navigating
career embedded within pediatric Copyright © 2021 by the American Academy of Pediatrics
life forever changed by a medical
medical care teams, first in oncology FINANCIAL DISCLOSURE: The authors have indicated
crisis in a child. The COVID-19 they have no financial relationships relevant to this
and then in palliative care. As such, I
pandemic changed everything about article to disclose.
have participated in hundreds of
these serious conversations. Our FUNDING: Dr McCarthy is supported by the Agency for
conversations in which bad news Healthcare Research and Quality (AHRQ) (K12HS026379)
need to be 6 feet apart created an
about a child was given to a family. and the Patient-Centered Outcomes Research Institute
Yet despite my training and my inability to extend a comforting hand (PCORI) (K12HS026379). The content is solely the
responsibility of the authors and does not necessarily
professional experiences, I felt totally or gentle touch to offer support. The represent the official views of the AHRQ, the PCORI, or
unprepared to be the parent on the isolation gowns and shields become the Minnesota Learning Health System Mentored Career
Development Program. The AHRQ and the PCORI had no
receiving end of bad news. noisy and distracting. The masks role in this article.
cover facial expressions: the POTENTIAL CONFLICT OF INTEREST: The authors have
Dr Schiltz and I have worked closely quivering chin, the biting of a tongue, indicated they have no potential conflicts of interest to
disclose.
together over the past 3 years as or the mouth about to speak but
members of the pediatric palliative words that struggle to come out. The
tools I routinely employ to To cite: McCarthy SRB, Schiltz B. Masks, Empathy,
care team and through Dr Schiltz’s
and a Pediatric Cancer Diagnosis During COVID-19.
role as a pediatric critical care communicate empathically were lost Pediatrics. 2021;148(5):e2021051696
physician. The day before my in the PPE covering us all.
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PEDIATRICS Volume 148, number 5, November 2021:e2021051696 FAMILY PARTNERSHIPSMASKS She would rip the mask off my face words of condolence when I am
and, if it was a paper mask, would struggling to catch enough air
Parent Perspective
pull off the strings so it could not be myself through the 3 layers of
Your child has cancer. worn again. “I need to see my fabric? How does anyone break this
It is leukemia. If she must have mommy” she told me, along with “I kind of awful news with personal
cancer, this is the good one to need kisses to make me feel better protective gear creating a barrier
have. and you can’t kiss me with a mask.” between doctor and patient?
At 3, she could not understand the
That bump on her head you have
vital role the mask played in Everything about that interaction
been calling the pediatrician about –
protecting her; she just saw it as a felt wrong. The empathy I wanted to
it is not from her falling out of the
crib while trying to hug her sister. It scratchy piece of material that was show was seemingly contained
is cancer too. coming between her and me. This behind the mask I had to wear.
broke my heart and made me want Patients cannot see the doctor’s
There was an incidental finding expression behind the mask,
to defy the rules and refuse to wear
on the spine MRI. It looks like
a mask, something that I would not impairing rapport. “It is difficult for
there is a tumor in her abdomen.
do. So instead of trying to explain, I the doctor to express empathy to
Pathology confirmed a second can- made masks fun. With help from the patient’s sufferings without
cer. I can’t believe this, but we are child life, physical therapy, and showing his/her expressions.”1
sure. She has two different cancers. Empathy is one of the most
occupational therapy, we
These statements were made to me incorporated masks into art important attributes parents
over the course of 7 days. Each of projects, relay races, and other receiving bad news desire.2 Yet
these shook me to my core. Some forms of play. By the end of the research has demonstrated that
resulted in my immediate tears. hospitalization, masks had become mask wearing was associated with a
Others were met with numbness, part of our daily routine, and the significant and negative effect on the
with the tears coming late at night only time she took mine off was for perception of physician’s empathy
as I looked at my sleeping child, my snuggles in her bed or kisses. and thereby impacted trust,
three-year-old daughter. All of these communication, and therapeutic
devastating statements, each life- Clinician Perspective alliance.3 Nonverbal communication
changing for my child, myself, and I was not prepared for the page I imparts much more than ever our
our family, were delivered by a received. “Can you please come to words can.4 As I stood there in my
clinician whose face was hidden by our room? I asked the team to put head-to-toe PPE, I could fully
a mask. At what each time seemed in a palliative care consult.” As I appreciate precisely how difficult it
to be the worst moment of my life, donned my appropriate PPE, I came is to show empathy, compassion,
all I could see were someone’s eyes into the room. My colleague, who and trust as I gazed into the eyes of
obscured through a face shield and could make handling leukemia seem my colleague and fellow mother.
their yellow mask. easy, was completely broken down,
crying, and had her face in her TOUCH
Masks have been an essential tool in hands. Her husband had a look of
slowing the spread of COVID-19. Parent Perspective
pure terror and disbelief in his eyes.
They have kept my “She has two cancers.” I did not realize the power of touch
immunocompromised child safe and until COVID-19 took it from me at
have protected the staff that have My mask covered my expression. the time I needed it most. As the
cared so lovingly for my daughter Perhaps the only way she could waves of shock radiated through me
and my family. Yet it is hard to deny have known just how devastated I after each piece of bad news, I
that although this protective gear was to learn of this news was by the would instinctively reach for my
serves as a barrier against germs tears welling up in my eyes. My husband or someone to hold my
and viruses, it was also a barrier natural response was to wrap my hand and tell me it would be okay.
between me and whomever I was arms around my friend and tell her But rarely was anyone there. Not
talking to. It is hard to describe how everything would be okay. “I will because he or others did not want
lonely this made me feel. I think this help you, I will fix her, I will do to be present but because they were
was a feeling my child shared. When everything in my power to make not allowed (only one parent could
a policy change mandated that this go away.” But how do I show be with a minor child). As I
parents be masked 24/7 while in you when my words are muffled by struggled to be strong in front of my
the hospital, my child was furious. the mask? How can I softly share my daughter, I barely stayed afloat in
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2 MCCARTHY and SCHILTZthe tidal wave of bad news given to consoling hand or the comfort of allowed only one parent at the
me on my own. arms wrapped around the parent bedside and prohibited siblings from
standing desolate on a collapsing visiting. This separation was
Sitting with my daughter in that world. Being 6 feet apart and incredibly hard on our family. My
hospital room, I craved the casual covered in a force field of daughters had shared a room since
touch, the friendly hug from awkwardly noisy disposable plastic, they were born and had never spent
colleagues dropping in or even a our human connection may become more than a night apart. At home,
smile from a familiar face, but a bit muted, distracted by the her twin started having nightmares
COVID-19 protocols discouraged guidelines designed to protect one and would wake up calling for her
these otherwise normal interactions. another from possible infection. sister, sobbing when she was not
At the time, I had never felt more
there. COVID-19 also separated my
alone or isolated. Yet as I look back, Yet in our need to be an empathic
husband and me during the hardest
my most vivid recollections are of physician, how does one reconcile
months of our lives. We saw each
the 3 clinicians who saw my fear the need to also protect oneself and
and loneliness and with my other for a few minutes in passing,
others? If I extend a hug to this
permission, sat with me and offered as we met outside the hospital to
mother who needs support, could I
a noisy isolation gown hug. These switch off, with one child upstairs in
be putting her and her child at risk?
simple acts of kindness, which Could I be putting my other patients the hospital and one in the car.
would have been considered routine at risk? What if she gave COVID-19
just weeks before, brought My colleagues from the palliative
to me? What about my family? The
recognition to my suffering in a way care team became my lifeline, my
uncertainty of cancer for this child
that words could not. And for those family in the hospital. Although my
juxtaposed with the uncertainty of
moments, it eased my suffering. I own family was unable to be at our
the pandemic made for a constant
will be forever grateful to these sides, they weathered the storm
conflict of how best to serve my
clinicians for their acts of kindness. duties as a physician while also beside me, managing my emotions
protecting myself and everyone else. and my daughter’s pain and
As time went on, we experienced symptoms, celebrating good days,
virtual encounters with providers One child, two cancers, both at the and sharing our struggles on bad
who were not present in the same time. One mother scared to ones. They were there with us, even
hospital. Phone calls, telemedicine death for what her child will endure. when pandemic procedures resulted
visits, and even iPads brought into While donned in full PPE (mask, in a short-staffed and under-
the room from the staff became the face shield, gown, gloves), I made resourced team. In some ways, the
norm. The physical distance often the radical decision to hug my isolation that the pandemic created
was far more than the suggested 6 colleague. A typically benign act that in our lives was lessened by the
feet or replaced entirely with pixels had become a risky interaction in providers who continued to show
on a screen. Strangely enough, those the COVID-19 pandemic. The only up despite the risks, the staffing
who were present regularly offered way I could fully express constraints, and the emotional toll
an unexpected source of support: compassion, empathy, and support COVID-19 was taking on us all.
child life teams, housekeeping staff, was through this gowned and gloved
and nursing aides, people who had hug, a physical connection with a Clinician Perspective
to bravely face the possibility of parent on the worst day of her life. Most of us can identify with the
contracting COVID-19 with each
feelings of isolation that occurred
patient encounter. I would like to
ISOLATION during the pandemic: we stayed
think that we provided comfort to
home, we did not gather in large
each other in human connection by Parent Perspective
simply being there. groups, and we connected
Mommy, do I still have a sister? electronically when able. However,
Clinician Perspective Out of all the horrible things I heard for families with hospitalized loved
In the world of pediatric oncology, during that first hospitalization, this ones, visitor restrictions
parents suffer seeing their child’s question, uttered by my child, the compounded their isolation and
normalcy turn into hospital stays, patient’s twin sister, crushed me the often seemed to traumatize them. In
surgeries, pokes, prodding, and most. Like most other hospitals, pediatrics, children were regularly
uncertainty. There are no words to ours restricted visits from friends separated from their siblings,
convey the message of support and family. Except for extraordinary grandparents, and friends, essential
better than the warmth of a circumstances, hospital policy parts of family and community that
PEDIATRICS Volume 148, number 5, Downloaded
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from www.aappublications.org/news by guest on October 19, 2021 3often are part of the proverbial theirs. But in the interest of Touch
village that helps raise a child. stopping the raging virus from Health care providers should
taking yet another victim, the art of continue to follow policy regarding
Visitor restriction policies physically empathic doctoring had to be totally social distancing and physical
tore this beautiful family in half, transformed. Yet what we believe contact, despite my own personal
magnified by the unique connection makes us good at caring was made experience of what those few
twin sisters share. These 2 girls who impossible by pandemic procedures, gestures meant to me. However,
shared a womb for 9 months now and that left us with a heavy moral many providers have improvised
had to resort to video calls and wound. with comments such as “this is
crayon drawings for months of where I would normally offer a hug”
inpatient cancer treatment. I often Although some of the restrictions or even give an “air hug” from 6 feet
reflect on how much pain and policies enacted early during the away. Although these statements
distressing symptoms my patient COVID-19 pandemic have been and gestures are not the same as the
endured because of the lack of being lifted in recent months, many will physical touch, they convey a similar
with her twin sister. How much likely stay in place for the message: that my distress and/or
opioid did I prescribe to capture the foreseeable future, requiring the distress of the situation is
pain of her separation from her adaptation on the part of pediatric recognized and valid, and they want
family? patients, their parents and family, to alleviate it. This recognition and
and health care providers. As we subsequent action, although not
These policies also made supporting
reflect on our experiences over the ideal, is still powerful.
my colleague hard, limiting our
past 18 months, we offer the
interactions often to a text message Isolation
following suggestions to other
or a quick drop-off of food or drinks.
families and health care providers My daughter has spent more days in
I could not offer a coffee break, a
who are now dealing with the same the hospital than at home since her
cafeteria dinner, or even just time to
barriers to communication we cancer diagnosis, and our family has
sit together and talk through the
experienced. tried many strategies to stay
emotional roller coaster of cancer
connected, with some more
treatment. Being 6 feet apart made
successful than others. Although
it hard to simply “be there.” Parent Perspective
video calls are helpful, those became
Masks challenging because of differing
CONCLUSIONS schedules, hospital providers and
My child, like most young children,
Parent Perspective learns through play. So she and I rounds occurring at inconsistent
spent hours “playing” with masks. times, mealtimes, and bedtimes. We
Over the ensuing weeks, Molly had more success with structured
We watched the Sesame Street
began her treatment. She was video calls, in which we would read
video5 on wearing masks and made
subject to nasal swabs for a story together (each child would
special masks for each of her stuffed
coronavirus regularly and spent have a copy of the book) or do the
most of the time isolated to her animals. Masks became hammocks
for her dolls and part of her same art project (one at home, one
room, after a swab had detected at the hospital). To stay connected
rhinovirus. For 35 days, every face collages. When she asked why we
as a family, we all had a small
she saw, besides her dad and me, had to wear masks, we learned
colored bracelet with a heart on it.
was wearing a mask. Somehow, we about germs through easy science
When one of the girls was missing
all got used to it. experiments and put rubber ducks
her sister or the other parent, we
in the sink to encourage hand-
would talk about sending a kiss or
Clinician Perspective washing. We used sticker charts to
love to them from the bracelet. We
Our team also got used to it. reward positive masking behaviors.
also read the story A Kissing Hand
Normally, we hug, console, and By making masks an object of fun for Chester Raccoon,6 which
touch those who hurt and grieve. and play, they went from being reinforced the message of
We sit with them and be present, scary and bad to a more neutral (or connection even while apart.
even in silence, when words do not even positive) part of her
convey the messages from our environment. Her care team often In all honesty, the best thing we did
hearts. We gather and support and joined in the fun, thus allowing her was let go of expectations about
watch chemotherapy destroy mutant experience to transfer to others as what this was supposed to look like.
cells trying to take over what is not well. We acknowledged to each other and
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4 MCCARTHY and SCHILTZto our children that this was hard Responding to these subtle technology, telehealth visits, and
and certainly not fair; we did not expressions can ensure increased focus on communication
like being apart either, but this is communication is accurate and techniques are immediate
what we had to do to ensure that facilitate the development of rapport opportunities to continue to support
our family would continue to be between provider and the patient patients, families, and providers in
together for years to come. This and family. optimal care of children with
gave us all permission to be upset serious illness.
and then move forward to face While maintaining appropriate
another day. distance, it is often hard to
demonstrate empathy as one would
Clinician Perspective ABBREVIATIONS
normally do, such as sitting close by
The basics of communication are or offering physical touch. However, COVID-19: coronavirus disease
essential when providing bad news empathy can be demonstrated 2019
to a parent of a child with cancer7; verbally (eg, phrases stating what PPE: personal protective
however, amid the confines of mask one would typically do: “I would equipment
wearing, social distancing and other normally offer my hand in
isolation procedures during the condolence”) and with nonverbal
pandemic, certain aspects of communication with intentional REFERENCES
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PEDIATRICS Volume 148, number 5, Downloaded
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from www.aappublications.org/news by guest on October 19, 2021 5Masks, Empathy, and a Pediatric Cancer Diagnosis During COVID-19
Sarah R. Brand McCarthy and Brenda Schiltz
Pediatrics originally published online October 7, 2021;
Updated Information & including high resolution figures, can be found at:
Services http://pediatrics.aappublications.org/content/early/2021/10/06/peds.2
021-051696
References This article cites 5 articles, 1 of which you can access for free at:
http://pediatrics.aappublications.org/content/early/2021/10/06/peds.2
021-051696#BIBL
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Downloaded from www.aappublications.org/news by guest on October 19, 2021Masks, Empathy, and a Pediatric Cancer Diagnosis During COVID-19
Sarah R. Brand McCarthy and Brenda Schiltz
Pediatrics originally published online October 7, 2021;
The online version of this article, along with updated information and services, is
located on the World Wide Web at:
http://pediatrics.aappublications.org/content/early/2021/10/06/peds.2021-051696
Pediatrics is the official journal of the American Academy of Pediatrics. A monthly publication, it
has been published continuously since 1948. Pediatrics is owned, published, and trademarked by
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