The ethical theory of utilitarianism involves maximizing collective happiness, but it’s more than just the reasoning behind ordering your favourite ice cream flavour or letting a trolley run over one person to save five. Several Canadian clinical institutions have adopted this approach for decision-making protocols during the COVID-19 pandemic.
In a recent paper, several researchers from the Temerty Faculty of Medicine and the Centre for Ethics at U of T examined the inequities that stem from a utilitarian approach to triage, as well as responses to such protocols. They also proposed new protocols that would result in equitable clinical practices. Given the scarcity of resources in the pandemic, these clinical decisions follow the practice of maximizing collective well-being. However, these decisions overlook the needs of individuals with severe illness or complex needs — often those who need the most treatment — by prioritizing those with a higher chance of survival.
Inequities in pandemic protocols
With the pandemic came an increased need for health care, but resources did not magically increase. As such, Canadian clinical institutions created documents to guide triage practices. Some of these documents present intrinsically discriminatory guidelines, thus perpetuating ableist and inequitable clinical practices.
One such document is the 2020 draft of the Ontario COVID-19 Triage Protocol, which uses a Clinical Frailty Score (CFS) to guide triage decision-making. Notably, patients who score high have a predicted mortality rate of over 80 per cent — meaning that they’re low priority for triaging. This includes patients with severe impaired cognition or neurodegenerative disorders, as well as those with lessened abilities to perform daily activities.
This document — as well as those of other jurisdictions — has evoked criticism because it excludes patients with neurodegenerative disorders and ultimately emphasizes those with a higher survival rate in the short run. Guidelines born of utility, such as the CFS, are intrinsically ableist when they deem individuals with categorical disabilities as less important than those without them. Even beyond the pandemic, 85 per cent of pediatric organ transplant centres consider neurological disorders when distributing organs — even when these impairments are not predictors for poor outcomes.
Current practices distribute health care resources according to maximization of overall benefit, making way for this principle by trading off principles for individual rights and benefits, such as justice.
Disability advocates and some individuals with disabilities often disagree with the idea that disability reduces quality of life. They argue that they are worse off not because of the disability itself, but because of the biases and barriers they face in a society designed for non-disabled people.
To be truly equitable, the application of justice, a core principle of medical ethics, must account for the perspectives of all those involved and be used to evaluate whether the allocation of health care resources is fair. Under the ethical view of prioritarianism — which emphasizes the happiness of individuals who are ‘worse off’ — the principle of ‘fair equality of opportunity’ allows those with disabilities to receive greater opportunity than others due to their deprivation of certain abilities, or, as it happens, their deprivation of access to society.
Current practices also fall short because of the lack of procedural justice and a holistic viewpoint during the development process of guidelines. Conversations of protocol development historically exclude those with categorical disabilities. Without insight into the experiences of these individuals, how is it possible to develop protocols that can adequately include them?
Quality of life cannot be reduced to the consequences of a diagnosis or simply one facet of a person’s identity. U of T researchers proposed another measure in their paper, unlike the CFS that evaluates overall individual well-being, it considers connection to nature and community, among other things, to provide a holistic view of quality of life.
To put things in perspective, acclaimed physicist Stephen Hawking’s diagnosis of ALS would render him low priority when using the CFS as a measure — he had little independence in terms of performing “activities of daily life.”
The researchers’ proposed scale, on the other hand, focuses on “capabilities and flourishing” rather than individual autonomy, and would thus depict Hawking as an individual with a high quality of life and well-being. Having won several awards for his contributions to society, Hawking was a valuable member of society — his disability did not hinder his ability to function in every aspect of life.
Clinical practices are inevitably born from a balance between individual rights and social utility. Social determinants of health, such as socioeconomic status and race, also play a role in clinical outcomes. In attempts to vilify ableist or otherwise prejudiced practices that stem from social factors, the researchers propose a just triage framework that affords “positive freedoms” — more leniency in assessing clinical priority — to those whose poorer prognoses derive from social conditions.
During a pandemic, when collective well-being is at stake, it may be easy to forget that the very definition of patient care includes providing services to individuals. The myriad of health risks and societal factors that these individuals are familiar with should not serve to systemically dismiss them from this care. Disability should not be thought of as what takes away one’s humanity — rather, it should challenge the societal ideas of normalcy.