Wright J, Huxol H, Harris C. Children are not small adults. HPHR. 2021;34
Playing a game of Candy Land with a tearful 12-year-old girl who lives in a pediatric long-term care facility (pLTCF) and has been isolated from her family at the onset of the COVID-19 pandemic, I consider the fact that protecting my patient from COVID-19 infection requires isolating her from her loved ones. An epic poem comes to mind. Homer’s Odyssey describes the plight of Odysseus and his perilous journey returning to his home kingdom of Ithaca. Due to uncontrollable circumstances including war and captivity, Odysseus is kept from his beloved homeland for years. On his eventual sea journey home he must sail between two sea monsters found on opposite sides of a narrow straight: the perilous whirlpool Charybdis and the six headed monster Scylla. As there is no escape without cost, Odysseus is forced to choose the lesser of the two evils; passing by Scylla, losing only a few sailors rather than risking the loss of his entire ship in the whirlpool. As a medical student rotating in a pLTCF at the onset of the pandemic, I recall many instances where physicians and facility leaders were forced to choose between the lesser of two evils while creating policies and best practices for resident children. Balancing the creation of an effective infection control policy with the negative effects of social isolation on resident children demonstrates one example: My patient was sad during the initial weeks of isolation from her family. Now, a year later and still isolated, I wonder if she and her family think that facility policies implemented to prevent COVID-19 infection have been worth the sacrifice.
Medically complex children comprise 0.4-0.7% of all U.S. children, and have a high prevalence of chronic medical conditions and comorbidities. A subset of this group who are the most medically fragile with multiple physical disabilities, severe neurologic impairment, and medical technology dependence, comprises the population of approximately 7,000 children living in pediatric long-term care facilities.
Pediatric long-term care facility leaders have been challenged to create policies that protect residents from infection while maintaining quality of life for resident children during the pandemic. This challenge highlights a longstanding problem among pLTCFs: a lack of state and federal regulations and licensing surveys specific to the populations that they serve.1 Nursing home standards, set by the Centers for Medicare and Medicaid Services (CMS), make no distinctions between guidelines provided to the nation’s approximately 90 pLTCFs versus 15,400 adult facilities. This leaves pLTCFs to create operations policies based on CMS guidelines made for geriatric populations. Policy examples include infection control, behavioral health, and quality improvement initiatives among many others. CMS regulations designed for geriatric facilities fail to address the needs of medically complex children. In turn, pLTCF licensing surveys done to ensure compliance with CMS regulations do not bring value when identifying deficits and opportunities for improvement.1 The COVID-19 pandemic has emphasized these shortcomings, as demonstrated below by pLTCF infection control considerations which are paramount at this time.
Over forty percent of reported U.S. COVID-19 deaths have occurred in adult nursing home residents or workers, demonstrating their vulnerability to COVID-19 infection.2 However, can we accurately extrapolate this information to include children living in pLTCFs? We know that pLTCFs face an increased risk of infection spread because resident children typically have roommates and are near each other during therapeutic and educational activities. In addition, medical fragility increases the risk of morbidity and mortality with typical viral infections in these children.3 Nevertheless, initial reports on COVID-19 in children have shown the clinical course to be less severe and hospital outcomes to be better than those reported in adults regardless of risk factors.4 A study of 48 children admitted to intensive care units with COVID-19 revealed that while 83% had comorbidities, the most frequent being medical complexity, overall survival of critical illness was far better than has been demonstrated in adult patients.5 Despite evidence of a relatively mild COVID-19 infection course in typical children, the potential toll of a viral outbreak in pLTCFs remains daunting based on historical experience. In 2018, an adenovirus outbreak at a New Jersey pLTCF took the lives of 11 children, and outbreaks of human coronavirus OC-43 have led to significant morbidity.6 Multisystem Inflammatory Syndrome7 and potential negative long-term outcomes of COVID-19 infection in children remain significant risks. Our patient population spans ages birth to 21 years, might there be differing manifestations, or the potential for more severe disease, among our older residents? In addition, the health of adults and healthcare workers in the facility must be protected to maintain a healthy workforce. At the pandemic outset, the “shut everything down” approach was appropriate for pediatric facilities given the circumstances. But a year into the pandemic, given evidence of a relatively mild COVID-19 disease course in children and increased availability of effective masking and personal protective equipment to protect healthcare workers, have the mental health consequences of prolonged isolation surpassed the benefits? My 12-year-old patient hasn’t been told that she is loved face-to-face by a family member since March 2020. She hasn’t been hugged due to COVID distancing restrictions and a lack of parental visitation. Thus, the question begs itself: don’t we owe her, and other children who live in facilities, the special consideration that their unique situations call for?
A significant policy challenge impacting children living in pLTCFs during the pandemic has been meeting their developmental, social, and emotional needs, with requirements for isolation and social distancing. According to CMS guidelines, March 2020 saw the implementation of isolation among LTCFs across the United States restricting visitation and separating residents from loved ones for months. Our pediatric residents were pulled from school attendance prior to school closures, and therapies were placed on hold unless deemed medically urgent. Though apparent to caregivers and families, many of our resident children have not demonstrated an understanding of precautions put in place nor the danger of the virus. The ability of our residents to comprehend threats and logic is limited by young age and intellectual disability. However, a sense of loneliness resulting from the loss of interaction with loved ones and therapists has been palpable. Additionally, there has been an emotional toll on families unable to visit with their child in person when stress over the child’s health is paramount, due to the pandemic. While there are repercussions to prolonged isolation for any population, the isolation of medically fragile children from their loved ones has presented unique challenges.
Our pLTCF has attempted to combat negative effects of social isolation by modifying LTCF guidelines to suit our pediatric facility and resident needs. We have continued to allow limited intra-unit interaction for healthy resident children. We have continued restorative therapy to maintain extremity range of motion and allow for individual resident interaction with skilled nursing staff. Virtual visits with loved ones have been beneficial to parents, however the benefit of these interactions to children with severe intellectual disability and sensory deficits has been less clear. Adults living in geriatric facilities have been primarily relegated to their rooms during the pandemic. In contrast, we have continued to allow some interaction of our pediatric residents with staff and each other to nurture their physical and emotional development; attempting to strike a balance between the protection and nurturing of children growing up in this unique situation.
Pediatricians have touted the mantra that “children are not small adults,” and the chasm is perhaps even broader in long-term care. CMS nursing home guidelines created for seniors have never been adequate to address pediatric-specific considerations such as the developmental age of residents, specific pediatric medications, restraints versus postural supports and enablers, and behaviors related to pediatric diagnoses rather than Alzheimer’s disease. The current pandemic has emphasized this shortfall. To meet this unmet need, CMS should work with the American Academy of Pediatrics and pediatric complex care societies to develop federal pediatric regulations and survey standards for pLTCFs. Leaders of pLTCFs have long advocated for their own set of standards for government reporting and regulation regarding not only patient care directives but also the Minimum Data Set, payment structures, quality improvement, and state survey standards. Combining regulatory guidance and data collection for pLTCFs with that for adult nursing homes has resulted in guidelines and data sets that are not helpful to pLTCF administrators, and a washout of valuable information regarding the thousands of children living in pLTCFs. Especially during a worldwide pandemic, the availability of pediatric-specific guidance would be invaluable to aid facility leaders as they make decisions for residents, attempting to shield them from potential disease while maintaining quality of life. As I let my young patient win at Candy Land in an attempt to lift her spirits, I feel a weight of responsibility for her situation as part of her health care team. She is a child isolated from her family, and I can’t help but wonder if pediatric-specific guidelines may have given her a different outcome.
The authors thank Michelle Stevenson, MD and Patricia Budo, Executive Director at Pediatric Complex Care, for guidance and review of this manuscript. The authors thank leadership and staff at The Home of the Innocents Kosair Charities Pediatric Convalescent Center for their cooperation in sharing experiences in our facility.
John Michl Wright, MD is a pediatric neurologist in training at Wake Forest Baptist Health, with a particular interest in complex care and medical education. Outside of work, he enjoys venturing hiking trails and boating.
Heather Huxol, MD is a hospitalist and Associate Professor of Pediatrics at the University of Louisville School Of Medicine. She is the Medical Director at The Home of the Innocents, a pediatric long term care facility for medically complex children.
Dr. Corrie Ann Harris, MD is an Associate Professor of Pediatrics at the University of Louisville School of Medicine and the Associate Medical Director of the Kosair Charities Pediatric Convalescent Center in Louisville, KY.