Imagine for the next patient you’re about to see in your practice, you get to choose between two. Both patients present with [insert a symptom here that you routinely diagnose and treat]. Patient A is otherwise healthy, with no significant medical history. Patient B has medical complexity, with the following attributes: carbohydrate-deficient glycoprotein syndrome, chronic coagulopathy, end-stage renal disease, epilepsy, hypothyroidism, obstructive sleep apnea, dilated aortic root, osteopenia, and progressive scoliosis; relies on a gastrojejunal feeding tube for nutrition and hydration, tracheostomy for oxygenation and ventilation, and 19 chronic medications; and resides with parents who are struggling with marital, employment, and financial difficulties.
Which patient would you choose? And why?
Next, imagine that one of your own children, or another family member, such as a parent or sibling, has a complex medical history - like patient B presented previously - and is sick again with an acute illness. In the doctor’s office, advertised as a patient-centered medical home, you overhear the medical staff commenting on your loved one: “Why do they keep coming here? I wish they would go straight to the emergency department or to another provider that knows them better.” It takes a while for a provider to enter the room. While waiting, you hear the staff remark, “I just don’t have the bandwidth to see this patient today; I really don’t know how or want to take care of them.”
How would this make you feel? What would you do?
In the current issue of Pediatrics, Ames et al1 present important findings from a multisite qualitative study on family-perceived discrimination from health care providers toward children with medical complexity (CMC) and their families. From semistructured interviews with 30 families of CMC, the study team applied grounded theory to distinguish themes and theories on discrimination. Lack of clinician knowledge about the child and family, clinician apathy, and biased clinician assumptions about the child and family were the main, perceived facilitators of families’ discrimination experiences. Families perceived a negative impact of clinician discrimination on their children. Families reported that clinicians limited their child’s access to care, provided substandard quality of care to their child, and dehumanized their child and family. In essence, families perceived that the pediatric health care providers shunned and rejected their children.
We believe that the disheartening findings presented in Ames et al1 are true and generalizable. Throughout our training and careers across institutions in all US geographic regions, we have repeatedly heard derogatory language used when pediatric providers present and discuss CMC (e.g., “a trainwreck kid”). During a recent grand rounds presentation given by our team on health care inequity for CMC, during which we highlighted Dr Martin Luther King Jr.’s quote, “Of all the forms of inequality, injustice in health care is the most shocking and inhumane,” a pediatric learner in the audience remarked publicly during the question-and-answer session, “Hospitalized CMC take up way too much time and effort on rounds. They take away time that I prefer to spend with other patients. CMC suck the oxygen out of our resident workroom.”
The important work by Ames et al1 brings overdue attention to intolerable attitudes, stigmas, and behaviors of pediatric providers toward CMC. The work begs several questions. Why are pediatric providers thinking and behaving this way? What is it about CMC that would lead pediatric providers to discriminate against them? Is it because taking care of CMC can be neither easy nor straightforward?2 Is it because the children’s health problems can be incurable, can lack a strong evidence base, and can require input from myriad clinical providers?2 Is it because providers perceive that the lives of CMC are not valuable? And regardless of these reasons, are pediatric providers self-aware of their discriminatory practices toward CMC? We hope that the findings from Ames et al1 summon further investigation to address these questions.
We are concerned that, too often, discrimination against CMC and the health care inequity that they experience go unnoticed. During a recent intuitional initiative on equity, diversity, and inclusion, our complex care team’s proposal to highlight health care inequity with CMC was rejected. The initiative leader stated, “That’s not the kind of inequity we’re looking for. We are focusing on more relevant issues, such as race/ethnicity.” The National Council on Disability (NCD) recognizes individuals with disabilities, which many CMC experience, as the largest unrecognized minority group in the United States.3 In its Health Equity Framework, NCD continues to advocate for designation of people with disabilities as a Special Medically Underserved Population.3 NCD posits that disability is a key demographic characteristic with equivalent associations of health care inequity as with race/ethnicity.3
As we continue to reflect on the findings of Ames et al,1 we are reminded of this important travesty: CMC do not choose the health problems that influence their path of health and wellbeing; the problems are forced on them through physiologic mechanisms with origins that are out of the control of the child and family in most circumstances. Yet, pediatric clinicians can choose to shun and disregard CMC and their health problems at will. We clinicians can passively decline and divert care for CMC, offering justifications such as, “I am not the right doctor for your child” or “My practice is just not set up to help your child” or “I think your child is better served by another service.”4 And, we can behave this way without repercussion. As an initial step to counter this situation, NCD proposes implementation of comprehensive, disability-related clinical-care curricula in all US medical, nursing, and other health care professional schools.3 NCD points out that disability competency is not a core curriculum requirement for accreditation or receipt of federal funding for most medical schools, residencies, or other training programs.3 In addition, NDC highlights that applicants who seek either a medical or other professional health care license are generally not required to demonstrate disability competency.3
In 1964, Louis Lasagna, MD, dean of the School of Medicine at Tufts University, presented a revised Hippocratic Oath,5 with the following excerpts: “I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon’s knife or the chemist’s drug…I will remember that I do not treat a fever, a chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability…I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm…May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.”5 Remembrance of these important charges should lead pediatric clinicians to do their best when caring for CMC. So, when reconsidering whether to choose patient A or B, presented in the opening paragraph of this commentary, pediatric clinicians will answer, “Actually, I’d love to take care of both.”
Drs Cook, Mauksar, and Berry conceptualized and designed this work, drafted the initial manuscript, and critically 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.
COMPANION PAPER: A companion to this article can be found online at www.pediatrics.org/cgi/doi/10.1542/peds.2022-060975.
FUNDING: No external funding.
CONFLICT OF INTEREST DISCLOSURES: The authors have indicated they have no potential conflicts of interest to disclose.
Comments
Living with a chronically ill child
in the 13 years he survived his disease I met all aspect and opinion of care. The angry neurosurgeon who, in later years, I would team with as a PA to help transform an undersupported service to a robust group. The chief of pediatric oncology at CHLA who treated me as a valued stakeholder at the my sons initial clinical visit, and later employed me in my first clinical PA position. Over my Son's life I gathered cherised collegues, and engaged in heated discussions with those who felt that my physical presence , and vocal counterpoints reminded them that a childs disease penetrates every aspect of life. Trying daily to remind these well trained and competent pediatric specialist that the worst pains inflicted were those of indifference or ignorance, and not the obvious disabilities of diease.
My son, born in 1983, and died in 1997. I still practice and, when presented with the provider coping mechanisms where they try to excuse themselves from the pain and awkward conditions that are part of chronic illness I call them out, but also try to remnd them that while healing a patient feels great, comforting them with compassion and true empathy provides a much deeper and complete sense of care.
VR
CFW PAC