Disability, Ethics, and Health Care in the COVID-19 Pandemic

Maya Sabatello, LLB, PhD; Teresa Blankmeyer Burke, PhD; Katherine E. McDonald, PhD; Paul S. Appelbaum, MD

Disclosures

Am J Public Health. 2020;110(7):1523-1527. 

In This Article

Nondiscrimination and Reasonable Accommodations

The prohibition of discrimination on the basis of disability, including the requirements of reasonable accommodations and modifications to ensure equal access to effective health care services, is well established in US and international law.[14–17] While the requirement of reasonable accommodations and modifications is not absolute, it aims to ensure that policies, practices, and procedures are inclusive of people with disabilities. Despite improvements, studies show that many health care facilities and medical equipment remain inaccessible, and that health care providers often have insufficient training about the needs of people with disabilities.[18,19]

Although these systematic deficiencies have resulted in poorer health outcomes among people with disabilities,[5] the undisputed need for urgent response in the pandemic has exacerbated the challenges. For example, newly constructed alternative care settings may be impossible for blind and low-vision individuals to navigate; the use of nontransparent facial masks prevents lip-reading among some deaf and hard-of-hearing patients; and the no-visitor order for adult patients comes at a time when an accompanying caregiver may be especially needed to facilitate communication and decision-making with some people with intellectual disability.[20] Some of these challenges are unavoidable during a pandemic and may not be in violation of the legal requirement for reasonable modifications (e.g., use of alternative care settings). Other challenges, however, could have been addressed with earlier planning, such as acquiring transparent facial masks.

Systemic barriers that have persisted for decades (e.g., inaccessibility of facilities and equipment) cannot be instantly reversed. However, adopting measures to facilitate engagement of patients with disabilities in their care is essential. For example, informed consent processes should take place, as much as possible, through direct conversations with patients and their family members. The already expanded use of telemedicine options to facilitate communication among clinicians, patients, caregivers, and family members should include disability-friendly accessibility measures that can be downloaded into computers and mobile devices (e.g., remote audiovisual description services for blind and low-vision individuals, captioning or third-party remote connection with American Sign Language interpreter for deaf and hard-of-hearing people).

The requirement of reasonable accommodations and modifications is also key for treatment decisions. A patient with disabilities may require, for example, an extended period of ventilator use for recovery or bed allocation in an established (rather than an ad-hoc) care setting, where accessible equipment is more likely to be available. Classifying patients' usual caregivers as "essential personnel," who are entitled to provide support to hospitalized patients, should also be considered. Certainly, such a classification raises several dilemmas, including the possible risk of infection to caregivers, need for personal protective equipment at a time of shortage, and determining that caregivers are not under undue pressure to risk their own lives to support the individual with disability. However, as attested by the growing number of states that have reversed their no-visit policy for people with disabilities,[20] such accommodations allow caregivers to provide indispensable and necessary supports during the pandemic and throughout the admission and hospitalization period. Plain-language forms inquiring about the needs of a patient with disabilities at time of admission to health care facilities,[21] coordinated efforts with community-based organizations, and consultation with in-house experts (e.g., university disability services) can be instrumental in finding practical solutions and better addressing the needs of patients and providers with disabilities.

processing....