This research aims to examine access to medical treatment during the COVID-19 pandemic for people living with disabilities. During the COVID-19 pandemic, the practical and ethical problems of allocating limited medical resources such as intensive care unit beds and ventilators became critical. Although different countries have proposed different guidelines to manage this emergency, these proposed criteria do not sufficiently consider people living with disabilities. People living with disabilities are therefore at a higher risk of exclusion from medical treatments as physicians (...) tend to assume they have poor quality of life, whereas access to medical treatment should be based on several parameters, including clinical data and prognosis. However, the COVID-19 pandemic shifts the medical paradigm from person-centred medicine to community-centred medicine, challenging the main ethical theories. We reviewed the main guidelines and recommendations for resources allocation and examined their position toward persons with disabilities. Based on our findings, we propose criteria for not discriminating against people with disabilities in allocating resources. The shift from person-centred to community-centred medicine offers opportunities but also risks sacrificing the most vulnerable people. The principle of reasonable accommodation must always be considered to guarantee the rights of persons with disabilities. (shrink)

This paper argues that we ought to rethink the harm-reduction prioritization strategy that has shaped early responses to acute resource scarcity (particularly of intensive care unit beds) during the COVID-19 pandemic. Although some authors have claimed that “[t]here are no egalitarians in a pandemic,” it is noted here that many observers and commentators have been deeply concerned about how prioritization policies that proceed on the basis of survival probability may unjustly distribute the burden of mortality and morbidity, even while reducing (...) overall deaths. The paper further argues that there is a general case in favor of an egalitarian approach to medical rationing that has been missed in the ethical commentary so far; egalitarian approaches to resource rationing minimize wrongful harm. This claim is defended against some objections and the paper concludes by explaining why we should consider the possibility that avoiding wrongful harm is more important than avoiding harm simpliciter. (shrink)

Disability might be relevant to decisions about life support in intensive care in several ways. It might affect the chance of treatment being successful, or a patient’s life expectancy with treatment. It may affect whether treatment is in a patient’s best interests. However, even if treatment would be of overall benefit it may be unaffordable and consequently unable to be provided. In this paper we will draw on the example of neonatal intensive care, and ask whether or when it is (...) justified to ration life-saving treatment on the basis of disability. We argue that predicted disability is relevant both indirectly and directly to rationing decisions. (shrink)

Whose values should count – those of patients or the general public – when adopting the quality-adjusted life year framework for healthcare decision making is a long-standing debate. Specific disciplines, such as economics, are not wedded to a particular side of the debate, and arguments for and against the use of patient values have been discussed at length in the literature. In 2012, Sinclair proposed an approach, grounded within patient preference theory, which sought to avoid a perceived unfair discrimination against (...) people with disabilities when using values from the general public. Key assumptions about general public values that beget this line of thinking were that ‘disabled states always tally with lower quality of life’, and the use of standardised instruments means that ‘you are forced into a fixed view of disability as a lower value state’. Drawing on recent contributions to the health economics literature, we contend that such assumptions are not inherent to the incorporation of general public values for the estimation of QALYs. In practice, whether health states of people with disabilities are of ‘lower value’ is, to some extent, a reflection of the health state descriptions that members of the public are asked to value. (shrink)

I would like to thank Whitehurst et al for their comments on my paper.1 Although I will argue their approach will not eliminate the potential for disability discrimination from quality-adjusted life year -based assessment, their comments were very thought provoking. Whitehurst et al argue that, to the extent that allocating healthcare by QALYs discriminates against disabled patients, the fault is not with the QALY framework, but with ‘the descriptive systems of preference-based health-related quality of life instruments’.1 Specifically, they argue that (...) some HRQoL survey instruments do not characterise health impairments adequately. For example, Whitehurst et al mention an earlier study of HRQoL survey instruments that had different ways of asking about mobility. Some instruments asked specifically about the respondent’s ability to walk, while others asked about mobility. The study found that, in relation to individuals with spinal cord injuries, survey instruments focused on ability to walk produced lower quality of life scores than instruments focused on mobility. Whitehurst et al argue from this that survey instruments should include ‘adequate’ health state descriptions. This seems eminently sensible. However, contrary to their view, there is no guarantee that this will avoid discrimination. In fact, …. (shrink)

In intensive care, disputes sometimes arise when patients or surrogates strongly desire treatment, yet health professionals regard it as potentially inappropriate. While professional guidelines confirm that physicians are not always obliged to provide requested treatment, determining when treatment would be inappropriate is extremely challenging. One potential reason for refusing to provide a desired and potentially beneficial treatment is because (within the setting of limited resources) this would harm other patients. Elsewhere in public health systems, cost effectiveness analysis is sometimes used (...) to decide between different priorities for funding. In this paper, we explore whether cost-effectiveness could be used to determine the appropriateness of providing intensive care. We explore a set of treatment thresholds: the probability threshold (a minimum probability of survival for providing treatment), the cost threshold (a maximum cost of treatment), the duration threshold (the maximum duration of intensive care), and the quality threshold (a minimum quality of life). One common objection to cost-effectiveness analysis is that it might lead to rationing of life-saving treatment. The analysis in this paper might be used to inform debate about the implications of applying cost-effectiveness thresholds to clinical decisions around potentially inappropriate treatment. (shrink)