key: cord-0252446-qp9snffz authors: Haque, Omar Sultan; Stein, Michael Ashley title: COVID-19 Clinical Bias, Persons with Disabilities, and Human Rights date: 2020-12-03 journal: Health Hum Rights DOI: nan sha: 950e8be009d0df5cb4b2b037f41162c2b86fe12d doc_id: 252446 cord_uid: qp9snffz nan with disabilities by proclaiming that "every human being has the inherent right to life" such that states parties "shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others." 12 Connecting and enabling the rights contained in the CRPD are article 12 (equal recognition before the law) and interpretive General Comment 1, which assert that all persons possess the capacity to make decisions on an equal basis, regardless of disability, and underscore in the health care context that clinical determinations of patients lacking capacity cannot be grounds for circumventing the need for their consent to treatment. 13 And wisely, article 8 (awareness-raising) requires "immediate, effective and appropriate measures" to "raise awareness," "foster respect," and "combat stereotypes, prejudices and harmful practices relating to persons with disabilities." 14 The CRPD has been ratified nearly universally, with the result that it has influenced health care laws and policies at both the domestic level (for example, some 32 states are currently revising their mental health laws) and globally (the Sustainable Development Goals, unlike their predecessor Millennium Development Goals, include persons with disabilities). 15 These are great accomplishments, but stigma and lack of knowledge and awareness persist among health care providers both because of millennia-old instantiated social constructs and due to a lack of medical and public health education regarding persons with disabilities. 16 We explicitly note that the United States-from which we draw several errant examples-remains within the minority of United Nations member states not to have ratified the CRPD, thus begging the question whether it lags behind global standards absent having this explicit rights framework in place to inform practice. The COVID-19 pandemic, which is overwhelming health care systems and posing a dramatic threat to public health worldwide, highlights the issue of explicit and implicit bias against persons with disabilities in accessing health care and being treated equally and with full dignity therein. Reports from around the globe show how biases that have always been present have become magnified by COVID-19. For instance, Romanians with disabilities with full-blown COVID-19 in institutional care have been quarantined instead of hospitalized, something that is not being done to those without disabilities. 17 Descriptions of Guatemala's sole public psychiatric hospital note that it is a "dumping ground" for persons with disabilities and a COVID-19 breeding ground. 18 In the United States, there are claims of persistent discrimination against individuals with disabilities trying to access COVID-19-related health services, such as ventilators. 19 Globally, the COVID-19 Disability Rights Monitor Dashboard-an organization that monitors experiences of injustice by persons with disabilities-has received approximately 1,600 complaints from people in more than 120 countries. 20 Moreover, clinical triage and treatment criteria predicated on social constructions rather than evidence-based studies have been promulgated and may result in standards that further discriminate against patients with disabilities when apportioning ICU beds, ventilators, and other care. At the start of the COVID-19 pandemic in the United States, for example, the state of Alabama explicitly recommended that patients with intellectual and developmental disabilities be viewed as ineligible for ventilators. 21 Other US states issued similar triage and treatment guidance deprioritizing various categories of persons with disabilities; some of these crisis standards of care guidelines, after complaints to the US Office of Civil Rights, were subsequently amended to better ensure equal access and treatment. 22 Nevertheless, some utilitarian-inclined academics have viewed these triage and treatment prioritizations, which give lower priority to persons with various disabilities, with approbation in some significant medical practitioner journals that are widely read and influence public policy. 23 In our view, much discussion regarding how to make the best decisions about which patients with COVID-19 should get care-and when and howtends to presuppose that patients are philosophical abstractions with known prognoses and treatment costs that are fungible objects in a thought experiment. For instance, when discussing these kinds of o. s. haque and m. a. stein / perspective, 285-290 ?" Yet, contrary to abstractly grounded recommendations, real-life clinical decision-making is steeped in the richness of everyday clinical contexts and social textures and environmental impacts that often cannot be captured by top-down abstract formulations and recommendations. These details make all the difference in knowing the appropriate and ethical course of clinical care. Nonetheless, clinical decisions, especially in rapid and emergency situations-even when made in best faith-can be influenced by bias toward persons with various disabilities, such as patients with spinal cord injury, stroke, intellectual and developmental disabilities, and many other conditions. 24 To illustrate, let us consider COVID-19 care for a patient with paraplegia who has lost motor function and control below the waist. Even if we believe that all people with the same diagnosis or level of COVID-19 pathophysiology should have equal access to care, there are certain biases that distort how we estimate likelihoods of treatment success and survival. Specifically, as explained below, when viewing patients such as this patient with paraplegia, and when facing the same medical facts, we are likely to be more pessimistic about prognosis, treatment success, and survival and more likely to underestimate patient resilience. This is due to a number of biases that exist among the general public that also manifest in clinical life. These biases have been described at length, and we contextualize them here. 25 We address four biases in particular: ineffectual bias, fragility bias, friendliness bias, and catastrophe bias. With "ineffectual bias," there is a systematic assumption that patients with disabilities are lower in agency and competence than non-disabled patients with the same presenting medical complaint. This leads to patients with disabilities being treated with more paternalism by their clinicians. For instance, a patient with paraplegia's subjective experiences and choices are more likely to be discounted, when in fact respect for article 12 of the CRPD would imply that the patient should be the lead decision maker. 26 Amidst COVID-19, this would manifest as clinicians being more likely to act on behalf of a patient with paraplegia and not taking into account the patient's autonomous preferences concerning care, whether in declining desired treatment or advocating for treatment when undesired. With "fragility bias," patients with disabilities are perceived as suffering more and having more severe symptoms than non-disabled patients with the same presenting medical facts. Amidst COVID-19, this would lead to less intensive and more conservative treatments that clinicians believe patients with disabilities "can handle." These patients' resilience and endurance would be underestimated, and care would be withdrawn earlier. This would undermine the obligations inherent in article 25 of the CRPD, as equal treatment and equal access to the same standard of health means that patients with paraplegia should get the same treatment and chance at attaining the highest standard of health as everyone else within their operative health care systems. With "friendliness bias," patients with disabilities are attributed as possessing greater warmth, trustworthiness, and prosociality than patients without disabilities. In the context of COVID-19, this clinical saintliness bias would manifest in a greater presumption by clinicians that patients with disabilities would be willing to give up their lives to save others amidst scarce resources. This tendency would be in conflict with article 10 of the CRPD, which suggests that respect for persons with disability as having equal dignity means that one cannot presuppose just by virtue of their disability that they necessarily have a lower quality of life or self-regard themselves less due to disability and can therefore be deprioritized for limited health care resources. The patient with paraplegia-just like any non-disabled person-should therefore be presumed to be both worthy of and wanting to be cured and live despite COVID-19, unless evidence suggests otherwise. With "catastrophe bias," the clinician will tend N U M B E R 2 Health and Human Rights Journal to project more catastrophe onto the patient with a disability than the patient actually experiences. With this bias, COVID-19 patients with disabilities, such as the patient with paraplegia we are discussing, would be perceived as having less quality of life and more mourning concerning their situation than if they were not disabled. This leads to more clinical pessimism, as well as a higher threshold for initiating treatment and a lower threshold for withdrawing it. Clinicians are likely to "give up" sooner than they would for non-disabled patients. There is less hope for a good prognosis and a resilient patient who can endure the struggle of hospitalization. The entirety of the CRPD, and especially article 10, gives us normative weight against this bias, as the equal value and inherent worth of all patients with disabilities means that we cannot presuppose more catastrophe for the patient with paraplegia than is warranted by the standards of clinical history taking and evidence that would apply to any patient regardless of disability status. We offer this information to help clinicians step back to engage in critical reflection about the processes that enter their minds when making treatment decisions for their COVID-19 patients with disabilities, and to help clinicians, scholars, policy makers, patients, family members, and advocates ensure that none of the above biases are distorting perceptions of patient prognosis, how likely treatment is to be successful, how likely patients are to benefit from treatment, how likely patients are to survive after treatment, and how resilient patients may be throughout the treatment and recovery process. This information is especially relevant in high-stakes emergency and critical-care settings, where clinical decisions about intensity and goals of care are soaked in value judgments that are particularly prone to contamination by the kinds of biases we have described that affect persons with disabilities. Hope is crucial for the therapeutic alliance and treatment success. Patients with disabilities have enough barriers to adequate care, ranging from lack of physical and sign-language accessibility and inadequate insurance coverage to "inadvertent" discrimination (for example, CT machines that little people cannot reach) to outright stigma (declining in vitro fertilization to women with disabilities because they would be "inappropriate" parents). Clinical life is ever more precarious if the biases of clinicians dissolve some of the hope that would otherwise be present between patient and clinician. While it is true that clinicians need to know more about their legal obligations to persons with disabilities related to required accommodations, everyday moral decisions are also important and probably more immediate, especially during pandemics such as COVID-19. A lesson that ought to be reinforced from the experiences of the COVID-19 pandemic is that, at its most humane, clinical medicine is and should be situated in life as it is lived, for better or worse. Patients should be acted on as non-interchangeable precious particulars with unique needs, not generic abstractions or aggregates with equal baseline social situations. Another lesson is one that patients with disabilities have always known: even with the same diagnosis and treatment plan, life is more precarious not because of inequality in pathophysiology but due to inequity in cultural, historical, and social psychological factors, as well as normative anti-human rights presuppositions that creep into philosophical formulations of what constitutes "ethical" health care. Disparities arise from how we see one another and the degree to which we see dignity in one another as fully and equally human and as bearers of human rights. Finally, a lesson that has been dramatically highlighted by the COVID-19 pandemic is that clinicians can be disability rights agents for change. 27 Clinicians committed to human rights should resist the scrupulous ethical myopia of utilitarian thinking in the clinic and should empower their patients with disabilities and their colleagues to see clinical life and the health care needs of those with disabilities not with a lens of bias and burdensomeness, but with a lens of dignity, equality, and disability-based human rights. Disability and health law The Oxford handbook of U.S. healthcare law Disability Disability-adjusted life years (DA-LYs) for decision-making?: An overview of the literature Disabled bodies and good organs Compounded disparities: Health equity at the intersection of disability, race, and ethnicity (roundtable workshop on the intersection among health disparities, health equity, and health literacy Education and HIV/AIDS: Disability rights and inclusive development Convention on the Rights of Persons with Disabilities, G.A. Res. A/61 The UN Convention on the Rights of Persons with Disabilities: A commentary Convention on the Rights of Persons with Disabilities, G.A. Res. A/61 Disability human rights Convention on the Rights of Persons with Disabilities Equal Recognition before the Law Mental health, legal capacity, and human rights United Nations Department of Economic and Social Affairs, Convention on the Rights of Persons with Disabilities (CRPD) Equal access to health care under the UN Disability Rights Convention European Network on Independent Living, Urgent appeal requesting access to COVID-19 medical treatment in Romania European Network on Independent Living, the Validity Foundation, the International Disability Alliance U.S. civil rights office rejects rationing medical care based on disability, age Fair allocation of scarce medical resources in the time of Covid-19 Biases in the evaluation of self-harm in patients with disability due to spinal cord injury Disabling stroke in persons already with a disability: Ethical dimensions and directives The social psychology of disability Health disparities of adults with intellectual disabilities: What do Health and Human Rights Journal we know? What do we do? Humanizing clinical care for patients with disabilities Dunn (see note 24); Haque and Stein (see note 25) The Convention on the Rights of Persons with Disabilities: What is at stake for physiatrists and the patients we serve