The Care Children Deserve

Photo by Chris Carzoli on Unsplash INTRODUCTION l. The Need for a Children’s Hospital El Paso, Texas did not receive a children’s hospital until 2012, much later than would be expected given its demographics and geographic isolation. By that time, there were already nearly 250 children’s hospitals spread across the United States, some in areas far smaller, far older, and in far closer proximity to other urban centers.[1] Without accounting for its substantial population of undocumented immigrants,[2] El Paso is the country’s 22nd largest city (and situated in its 70th most populous county).[3] The nearest American city of comparable size is Phoenix, AZ, located about 350 miles away. Moreover, El Paso has a decidedly young demographic skew: more than 28 percent of the population is under the age of 18, compared to 26.5 percent of the population in Texas and 23.1 percent of the population nationally.[4] This gap is expected to widen in the coming years.[5] El Paso children also have less access to care than children in cities with comparable populations and population structures. Though the situation has improved in the last decade, El Paso contains several Health Professional Shortage Areas (HPSAs) for primary care, dental health, and mental health. This is in addition to many Medically Underserved Areas (MUAs) for primary care, specialty care, dental health, and mental health.[6] This means that El Paso children wait longer for their appointments and are often seen by tired and overworked providers. Before the El Paso Children’s Hospital (EPCH) opened its doors if these children needed advanced care, they had to leave the city, and many simply did not have the resources to do so. It is more difficult to assess the quality of the care that they were able to receive locally, as few systematic reviews of pediatric outcomes in the region were conducted during that period. Nevertheless, several El Paso physicians look back and describe an “unacceptably low” standard of care.[7] Regardless, access and quality are interrelated, and children’s hospitals tend to promote both.[8] ll. Why Did It Take So Long? There are several reasons why El Paso did not receive a children’s hospital until years after the need for it became apparent to forward-thinking physicians and other interested parties, including select parent groups. a. There were no wealthy benefactors willing to establish a children’s hospital endowment, forcing the hospital’s proponents to ask the taxpayers to issue $120 million in bonds for the project.[9] However, El Paso is fairly poor. The median annual household income is approximately $42,000, more than $17,000 below the state average and $25,000 below the national average.[10] Property values are low, and Texas does not do much to redistribute funds from wealthier to poorer parts of the state, so resources for community development are limited and spending priorities must be chosen carefully. b. The wealthier, less-Hispanic parts of El Paso were reluctant to fund a project that was billed primarily as a means of assisting poor, Hispanic children. c. Two previous children’s hospital projects had fallen through after their for-profit sponsors pulled out, and some El Pasoans were hesitant to try again. d. Tenet Healthcare, the owners of El Paso’s largest for-profit hospital network, opposed the project. They feared competition for the basic services they provided in their “children’s wing,” and perhaps knew that they might no longer get away with providing substandard pediatric care. When, over their objections, the project appeared on the ballot they launched a vigorous advertisement campaign against it. Some physicians joined them. e. Low levels of education and civic engagement in El Paso, coupled with an underdeveloped sense of entitlement, led to complacency. There was a lack of political will for a big project like the children’s hospital because many El Pasoans did not think that they deserved better than what they were getting. They were accustomed to a certain quality of care and a certain level of access to care. If they were not content with the status quo, they were at least tolerant of it. This last point is worth elaborating upon. Fewer than 24 percent of El Pasoans complete a bachelor’s degree, compared to nearly 32 percent of Texans and nearly 35 percent of Americans.[11] The city’s high school graduation rate is just above 75 percent, nearly 10 percent below the corresponding national and state rates.[12] Additionally, the majority of available jobs are low-paying and physically demanding, so many well-educated El Pasoans choose to make their lives elsewhere (“brain drain”).[13] Poverty and limited English proficiency compound upon low levels of education to lower access to the instruments of democracy and erode democratic culture, and they make the population more susceptible to manipulation by powerful interests – on any side. Tenet Healthcare’s advertising campaign was better funded than the campaign for the children’s hospital, and physicians and experts lined up on both sides which created confusion. In addition, and perhaps counterintuitively, given El Paso’s poor and largely Hispanic population (>80 percent),[14], [15] trust in the healthcare system is high.[16] One possible explanation is exceptional quality of care, though all the facts suggest this is not the case. Other explanations include a high degree of physician-patient ethnic concordance, a cultural deference to authority, and underentitelment, that is, the belief that one deserves less than what dispassionate others conclude s/he deserves. Any population can grow accustomed to the status quo and poverty, lack of education, and membership in an otherwise vulnerable group can prevent information filtering in from outside the city – nationwide trends – from really “taking hold.” However, in El Paso, the situation is still more complicated. Many El Pasoans have family in Mexico and cross the border regularly for shopping or recreation. In many ways, El Paso and Ciudad Juárez form a single community, and even El Pasoans who have been in the country their entire lives tend to maintain a strong connection to Mexico. This is relevant because the quality of medical care in Mexico (though improving) is low,[17] and expectations for what the government (or any large entity) will do for the common man lower still.[18] El Paso voters ultimately made the decision to fund the construction of a children’s hospital, though by a margin of less than 2 percent and with fewer than 12 percent of eligible voters weighing in.[19] The El Paso Children’s Hospital has more than delivered on its community health improvement promises. It has reduced pediatric outmigration for subspecialty and surgical care by more than 80 percent, substantially increased the county’s physician workforce, and launched several successful preventive health and health education programs. In addition, it has promoted cutting-edge research on a slew of pediatric conditions and helped to increase the city’s physician retention rate.[20] But there have been some serious hiccoughs along the way, including a bankruptcy crisis in 2015 that caused almost half of the hospital’s board to resign,[21] and there is still a lot of work to be done.[22] lll. A Better Approach to Building Children’s Hospitals The difficulty in opening a children’s hospital in El Paso serves as an important starting point for a discussion on the principles of ethical governance. Most agree that when the private sector fails to address an important community need, it is the responsibility of the government to intervene. However, people differ on what they consider an “important community need” and the precise role of government in filling needs. They may also prefer that government intervention occur at the local, state or federal level, or some combination of the three, depending on the issue before them. Five separate feasibility studies were conducted in the lead-up to the 2007 vote. All agreed that El Paso needed a children’s hospital.[23] ,But none discussed how much it needed a children’s hospital, i.e., what trade-offs would be appropriate for the community to make in order to build one. Nor could they. People will always prioritize differently. Perhaps a delay in funding a children’s hospital would allow for a restructuring of the school system. Americans usually prefer to decide such issues at the ballot box, either directly or through their representatives. However, for projects like a children’s hospital, where not all community members are informed enough on the pertinent issues to perform a cost/benefit analysis, and the risks of not acting can be severe, some other mechanism, or some supplementary mechanism, of deciding on the issue is more appropriate. In determining whether and what types of state intervention are justified, ethicists weigh several competing concerns: beneficence (the good that is likely to come to the community, folding in the harm to certain stakeholders), justice (in this case, for children, in terms of access to and quality of care) and autonomy (of the voters). However, in many communities across the country, after the need for a children’s hospital is demonstrated[24] if local voters and their representatives weigh in at all, it need only be to decide on zoning and other logistical issues because wealthy benefactors are willing to foot the bill.[25] In communities like El Paso, where no such benefactors make themselves known, voters or their representatives are asked to make a much more difficult decision: whether to fund a children’s hospital by raising taxes on themselves. That may not be fair to them, especially if their community is already poor, and it is certainly not fair to the children whose health and quality of life are at stake. Though El Paso did eventually vote to fund a children’s hospital, similarly situated communities may vote differently, and their children could suffer as a result, just as El Paso children suffered during the delay. Communities like El Paso may also be in a poor position to make truly autonomous decisions on this issue. Poverty and lack of education can lead to confusion or ambivalence owing to lack of information or access to the tools necessary to become informed. For-profit hospital chains unwilling to establish their own children’s hospitals, and others who stand to lose out, can use their considerable power to unduly influence the debate, which can also be inaccurately cast as one about redistributing resources from wealthy white households to poor, “undeserving” ethnic minorities. But one need not accept an argument about diminished community autonomy to conclude that some form of state or federal intervention to tip the scales on specific children’s hospital projects is ethically permissible. This is partially because the autonomy concern, with respect to the children’s hospital issue, is a red herring. As noted above, voters and local officials in most communities barely weigh in on children’s hospital projects at all. Projects which, it is important to stress, concern the welfare of a non-voting vulnerable group and so maybe should not be subject to majoritarianism to begin with! Moreover, if a state or the federal government were to establish a uniform process for determining whether a community needs a children’s hospital, e.g. delegating authority to a health planning agency that performs regular and transparent health infrastructure assessments and proactively issues “certificates of need” (as opposed to issuing them only after an application by interested parties), the democratic process is respected more than if a children’s hospital were simply foisted upon a community by wealthy benefactors. If the state or federal government were also to help qualifying local communities obtain their children’s hospitals, much local hesitancy about the hospital would shrink. One may wonder whether this is just “kicking the problem up to another level of government.” There is, after all, no assurance that political will for building children’s hospitals in needy communities will be higher at the state or federal level than at the local level. It may even be lower, as state and federal officials are more emotionally removed from the conditions on the ground. However, a key difference is that the reliance on a single governmental agency – one that has the resources to perform thorough, less biased assessments – removes a lot of the extraneous variables with bearing on the success of a children’s hospital project. Such an agency focuses only on the first part of the project, establishing that the hospital is necessary. This is a lower hurdle to clear, and it provides momentum for the next parts of the process, which may include varying degrees of state or federal government intervention, all of which could also be managed by a different agency. This system also makes capture by powerful interests difficult. Not only do these interests often appear less powerful at the state or federal level than locally, but a health planning agency applies objective criteria in making its determinations, and the next steps occur “in a different house.” Finally, state or federal involvement leads to parity across communities and sounder resource management because children’s hospitals generally serve areas outside the communities in which they are situated. Once a certificate of need has been issued to a community indicating that it needs a children’s hospital, the state[26] may (1) build the hospital using its own funds or funds appropriated to it for that purpose by the federal government or (2) let the local community take the lead, providing subsidies on a sliding scale to ensure that the communities which struggle to afford a children’s hospital still get one. For a variety of political and budgetary reasons, this latter route is more realistic, and it has the advantage of building local community buy-in, which could be important if the children’s hospital is to successfully recruit personnel, receive referrals from local physicians and actively participate in the local medical education/research enterprises. A certificate of need issued by an impartial government agency as part of its mandate might itself be enough to persuade a local community to take action. It could spur proponents to organize, if they had not done so earlier, and could be used as ammunition in their advertisement campaigns. But if the community is still apathetic or hesitant, the state can launch educational initiatives, including those aimed at changing underentitlement, and help it negotiate with for-profit hospital chains to see if they can be incentivized to take a children’s hospital project on. The state may also consider issuing different types of certificates of need and, for the highest level, require that the community build a children’s hospital, in the same way, that it (often) requires it to have police or fire protection. Subsidies would almost certainly have to be offered for this to be politically viable (and ethically acceptable). CONCLUSION There are several issues with this framework, including precisely how a financially infeasible but necessary children’s hospital can be made feasible. Details will have to be filled in. Nevertheless, it is something worth investigating. It could significantly improve the current situation, in which communities like El Paso are essentially left to fend for themselves. Disclaimer: The author has family associated with the El Paso Children’s Hospital. Chetan Moorthy and Sadhana Chheda are his parents. Chheda served as Board Secretary and works at Children’s as a neonatologist. Moorthy contracts with Children’s to provide radiology services. Both have practiced in El Paso for decades, and their experience is drawn upon to support some of the article’s claims, particularly those for which no hard data has been collected. [1] Casimir, Georges. 2019. “Why Children’s Hospitals Are Unique and So Essential.” Frontiers in Pediatrics 7 (July). https://doi.org/10.3389/fped.2019.00305. [2] Pew Research Center’s Hispanic Trends Project. 2019. “Metro Area U.S. Unauthorized Immigrant Population Estimates, 2016 and 2007.” Pew Research. March 11, 2019. https://www.pewresearch.org/hispanic/interactives/unauthorized-immigrants-by-metro-area-table/. [3] “City and Town Population Totals: 2010-2019.” 2020. United States Census Bureau. https://www.census.gov/data/tables/time-series/demo/popest/2010s-total-cities-and-towns.html. [4] “El Paso, Texas: Demographic Profile.” 2017. EPTX. 2017. https://www.elpasotexas.gov/economic-development/business-services/data-and-statistics/population. [5] “Community Health Needs Assessment 2014.” 2014. El Paso Children’s Hospital. https://elpasochildrens.org/wp-content/uploads/2019/08/epch-chna-report-final-9-29-14-v3.pdf. [6] Ibid. [7] Moorthy, Chetan, and Sadhana Chheda. 2020. Conditions in El Paso, Texas: Physician Services and Patient Perceptions. Interview by Gyan Moorthy. In-Person. [8] “All Children Need Children’s Hospitals.” n.d. National Association of Children’s Hospitals and Related Institutions. Accessed November 29, 2020. https://www.upstate.edu/gch/pdf/academics/allchildren.pdf. [9] Schalden, Mary. 2015. “Children’s Hospital Timeline.” El Paso Times, October 5, 2015. https://www.elpasotimes.com/story/news/2015/10/05/childrens-hospital-timeline/73394588/. [10] “El Paso, Texas: Demographic Profile.” 2017. [11] Ibid. [12] “High School Graduation Rate Data for El Paso, TX.” 2018. Open Data Network. 2018. https://www.opendatanetwork.com/entity/1600000US4824000/El_Paso_TX/education.graduation_rates.percent_high_school_graduate_or_higher?year=2018. [13] Anderson, Lindsey. 2015. “More People Leave El Paso for Elsewhere than Other Major Cities.” El Paso Times, July 22, 2015. https://www.elpasotimes.com/story/news/local/2015/07/22/more-people-leave-el-paso-elsewhere-than-other/71987220/. [14] “El Paso, Texas: Demographic Profile.” 2017. [15] Armstrong, Katrina, Karima L. Ravenell, Suzanne McMurphy, and Mary Putt. 2007. “Racial/Ethnic Differences in Physician Distrust in the United States.” American Journal of Public Health 97 (7): 1283–89. https://doi.org/10.2105/AJPH.2005.080762. [16] Moorthy, Chetan, and Sadhana Chheda. 2020. [17] Barber, Ryan M., Nancy Fullman, Reed J. D. Sorensen, Thomas Bollyky, Martin McKee, Ellen Nolte, Amanuel Alemu Abajobir, et al. 2017. “Healthcare Access and Quality Index Based on Mortality from Causes Amenable to Personal Health Care in 195 Countries and Territories, 1990–2015: A Novel Analysis from the Global Burden of Disease Study 2015.” The Lancet 390 (10091): 231–66. https://doi.org/10.1016/S0140-6736(17)30818-8. [18] Lagos, Lorenzo Felipe. 2012. “Institutional Trust: The Case Study of Mexican State Institutions.” Student Perspectives on Institutions, Choices, and Ethics 7 (4): 39. [19] “Final Election Results (2007).” 2007. El Paso County Elections Department. https://el-paso-county-elections.s3.amazonaws.com/documents/files/000/000/300/original/ELECTION_RESULTS_FINAL.pdf?1450312070. [20] “2018 Annual Community Benefit Report.” 2018. El Paso Children’s Hospital. https://elpasochildrens.org/wp-content/uploads/2018/11/epch_communityreport_2018_small.pdf. [21] Flores, Aileen B. 2015. “Taxpayers Still Owe $116M for Construction of El Paso Children’s Hospital.” El Paso Times, May 27, 2015. https://www.elpasotimes.com/story/news/local/2015/05/27/taxpayers-still-owe-116m-construction-childrens-hospital/31261601/. [22] Moorthy, Chetan, and Sadhana Chheda. 2020. [23] “History of El Paso Children’s Hospital.” 2020. El Paso Children’s Hospital. 2020. https://elpasochildrens.org/about-us/. [24] In many states, a “certificate of need” must be obtained before new healthcare facilities can be created. See Mercatus Center. 2015. “How State Certificate-of-Need (CON) Laws Affect Access to Health Care.” Medium. December 23, 2015. https://medium.com/concentrated-benefits/how-state-certificate-of-need-con-laws-impact-access-to-health-care-b8d3ec84242f for more. Certificates of need may slow the founding of hospitals in some areas, but they could also spur it when political will is low or absent. [25] Moorthy, Chetan, and Sadhana Chheda. 2020. [26] Given federal/state separation of powers, it is very unlikely that the federal government would be directly involved at this step