The following post does not have associated quotes from nursing or RT staff. If I solicited thoughts or comments from RN or RT staff regarding this topic, I am sure their quotes would mention; tiredness, moral distress, and uncertainty. The topic of interest? COVID-19.
This post will describe the pandemic as it related to ethics and rationing of resources. Thankfully, we have been largely spared, thus far, from the most sinister impacts of the pandemic in pediatrics from a medical standpoint. This sparing from medical impact does not suggest pediatrics has not suffered financially or morally. We know that to be true.
Pandemics, when they arise, bring about a perspective change in the mind of policymakers and ethicists. Notably, this involves shifting from the standard of care for a particular disease process to the crisis standard of care. In a crisis, healthcare providers adhere to a different standard of care; this is especially true in times of resource scarcity. The invocation of the crisis standard of care has to come from leadership at the local, state, or governmental level. Such crisis standards of care are often handled on a state level and are only applicable once all other avenues of providing the proper standard of care have been exhausted.
Abdication of the standard of care for neonatal patients does not appear to have occurred based on my literature review. Such abdication of the standard of care would involve not intubating a patient to place them on a ventilator if said ventilator was triaged to another patient. I'll explain.
Let us pretend that an infant born at 27 weeks' gestation just delivered and said infant needs intubation. They cannot maintain appropriate ventilation and oxygenation with CPAP support. At the same time, a 45-year-old man with hypertension and diabetes suffers respiratory failure from COVID-19. In times of plentiful resources, such needs rarely reach hospital administrators' attention. The patients' needs are taken care of in their respective units, the NICU and the MICU. For this exercise, pretend this occurred at a surge in cases, and the governor ordered a crisis standard of care. Also, pretend that the hospital has exhausted all of their options for additional ventilators, and there is only one ventilator left for both patients. Who benefits from intubation? Who continues with a sub-optimal mode of ventilation, even if said mode would lead to their death?
Healthcare providers could remedy such an example with higher CPAP settings, non-invasive surfactant administration, or transition to NIPPV support. Recall, however, NIPPV requires a ventilator and, thus, would not be the best option. Who gets the ventilator? Does it matter that the 45-year-old has children and a spouse? What characteristics of the patient must we consider when deciding to divvy out a resource in times of scarcity?
Triage scoring systems attempt to help healthcare providers (more accurately, a committee as the bedside clinicians should not make decisions about reallocation of resources) decide who receives a resource in times of scarcity. The well-known Sequential Organ Failure Assessment (SOFA) score for adults and the Pediatric Logistic Organ Dysfunction (PELOD) score for children represents scoring systems providers use to help decide who receives a resource during crisis standard of care. The scores report out predicted mortality over a short-term basis. Those with high predicted mortality would not receive the resource over another person with lower predicted mortality. Of course, it is not that simple.
Decisions made under the auspices of crisis standard of care often follow utilitarian principles. Utilitarianism means there is an attempt to maximize the good for patients. Thus, patients with lower predicted mortality would receive the resource. Utilitarian principles could also prioritize younger patients, given younger patients have longer predicted lives ahead of them, allowing them to pass through the same life stages as the older individual. Does this seem fair to the older person? Perhaps we would not allocate resources away from patients in their 40s without co-morbid conditions, but what about an 80-year-old?
The last sentence above describes ageism in resource allocation, the so-called allocation away from the elderly, and the fact that scoring systems may place them at a disadvantage. Many scoring systems add points to a patient's SOFA or PELOD score for long-standing co-morbid conditions predicted to decrease their life expectancy further. The sum of their SOFA/PELOD score and their co-morbidity score is the triage score. Patients with low triage scores are prioritized for the resources.
It makes sense that an older adult would have more co-morbid conditions. It might also make sense that they'd have a more inferior quality of life if they are incredibly sick with severe co-morbidities. Does their life quality or the potential for disability play a role in triage decisions? Some centers did include conditions considered disabilities in their triage scoring schemata, leading to uproar from disability advocates, and rightly so. The inclusion of disability in any additional scoring considerations places value on a patient separate from their predicted mortality. It crosses over into the dangerous territory of deciding who is not fit to live based on their disability. Thankfully, all of the resource allocation guidelines I've reviewed or help create have not included anything that disability rights advocates could construe as disadvantaging those with a disability in terms of allocation of scarce resources.
Ok, thus far, we've established that healthcare providers tasked with resource allocation decisions can rely on scoring systems to help guide decisions. Notably, said scoring systems are inherently imperfect, and they've highlighted institutional disparities that will need remedy long after the pandemic has passed. That being said, despite their faults, they represent an attempt to solve an almost unsolvable problem. Thank goodness we have similar scoring systems to help guide allocation decisions in neonatology! You must all recall our endless discussions about those scoring systems, right? No...? Oh, that is right, they do not exist! Oi vey!
If a healthcare system wishes to include neonates in their allocation protocols, as many have given a shared pool of resources, how do we assign scores for them? This was the task I, and many across the country in neonatology tackled early on in the pandemic. We've already discussed the NICHD calculator for periviable birth in another post. This calculator provides a mortality estimate for infants at 22-25 weeks' gestation. We spent time in that post also pointing to the deficits in the said calculator. For periviable neonates who need a ventilator in times of crisis standard of care, their inclusion in an allocation protocol is necessary. The calculator provides a reasonable estimate of their mortality. Not perfect.
Notably, the calculator is only valid for the first few days of a periviable infant's life. After that, we need another means of deciding the infant's mortality risk. Should we use their time on the ventilator as a surrogate for their predicted mortality? No, in neonatology, most babies die early in their course—babies who remain on the ventilator live. In fact, many protocols reference the paper in the link below by Hornick et al. to help assign mortality estimates to convalescing periviable neonates.
https://pubmed.ncbi.nlm.nih.gov/27018746/
Upon reviewing the article above, one will notice a drop in mortality estimates the longer the neonate is in the NICU. Eventually, barring any co-morbid conditions that would shorten the lifespan, the mortality estimate and resulting triage score would be very low. For older, term babies, healthcare providers can use the Score for Neonatal Acute Physiology with Perinatal Extension-II (SNAPPE-II) to help assign triage scores. Notably, this scoring system is not valid after the first day or so. Honestly, the assignment of scores for neonates is incredibly complex and fraught with the potential to count morbidities twice and assume the importance of developmental outcomes in decision making.
For example, let us say a neonate has a SNAPPE-II score associated with a high triage score. They also have a condition that would warrant additional points, given that said condition limits their lifespan. The condition that limits their lifespan is also the reason for their high SNAPPE-II score. Would it make sense to add on those additional points? Are we just counting their disease process twice? Providers must obviate such situations as much as possible.
More concerning is assigning additional points to a triage score for the potential for impaired neurodevelopmental outcomes. We commonly justify WLST in neonatology for developmental concerns under the auspices of shared decision-making. This common occurrence calls into question the moral status of newborns because we would not necessarily make the same decisions for an adult with poor neurologic outcomes or a child with an impaired neurologic outcome. Disability rights advocates and advocates for children with trisomy 13 and 18 pointed to this fact as healthcare systems propagated allocation protocols. Providers must make triage decisions based on mortality alone and not the potential for developmental impairment. For more regarding the moral status of newborns, please see the following paper:
https://www.tandfonline.com/doi/full/10.1080/15265161.2020.1779869
The video below further explores the moral status of newborns:
References:
Haward MF, et al. Should extremely premature babies get ventilators during the COVID-19 Crisis? AJOB. 2020. 20;7
Janvier A, et al. nobody likes premies: the relative value of patients' lives. J Perinatol. 2008. 28
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