Authored by Anjali Anbu, Global and Public Health Sciences ‘26
Art by Carina Garcia, Biological Sciences '23
Hidden amongst her vast catalogue of prolific literature, Virginia Woolf’s essay On Being Ill (1930) asks why illness has never quite taken its place beside love, death, war and jealousy as one of “the prime themes of literature.” When expressing love, she writes, we can turn our minds to Shakespeare, Donne, or Keats; on war, we can lean to Vonnegut, Heller, and Hemingway; the suffering patient, however, has nothing but the “pure sound…of Babel” to make their afflictions known to their doctor. Illness, then, displays clearly “the poverty of the language…English, which can express the thoughts of Hamlet and the tragedy of Lear, has no words for the shiver and the headache” [1].
Through these words, Woolf evokes a feeling familiar to many patients with chronic conditions: the ongoing gap between the suffering we feel and the limits of others’ understanding. The gap between patients’ pain and providers’ inability to completely connect with that pain poses significant obstacles in medicine, as treatment depends on providers’ assessment of need. Acknowledging that sociocultural barriers, such as access to education and cultural views of gender, class, and patienthood, make certain populations more likely to face difficulty communicating their conditions, it is clear that addressing these barriers can make a meaningful difference in improving population-wide quality of care [2].
In order to equitably distribute funding and treatment resources, various quantitative measures of disability have been developed. Forefront among these is Disability-Adjusted Life Years, or DALYs, which quantify the overall “burden” of disease by combining life years lost and lowered quality of life into one metric [3]. By using DALYs, the impact of disease and disability can be cleanly condensed into a singular number: ideal, as it would seem, for overcoming the limitations of language towards describing health. DALYs allow nonfatal conditions to be considered alongside fatal ones for resource prioritization [4], and are useful for assessing the impacts of disease over entire populations.
However, quantifying disability in this manner has growing ethical and validity concerns, and many physicians are beginning to criticize the use and implementation of DALYs. One of DALY’s main limitations surrounds the Years Lived with Disability (YLD) metric, one of two components comprising the DALY score. Here, physicians give different conditions a “weightage” from zero (perfect health) to one (death) by asking a panel to first compare the value of extended life for people with different conditions, then compare the value of extending life for abled persons to the value of curing disability for disabled persons. This presumption innately values the lives of disabled people as lower than abled lives. Because of this, critics of YLD argue that DALYs further engrain ableism into the medical system [5]. These assumptions perpetuate ongoing ableism within the healthcare field, which has direct negative impacts on the health outcomes of all people.
A large body of research shows that researchers and physicians, who by-and-large are not disabled, have significantly lower perceptions of disabled people’s quality of life than disabled people have of their own. When this occurs, disabled people’s lives are undervalued in medical practice, aggressive treatment is less likely to be pursued, and treatments that would enable continued life with disability are disregarded despite high reported quality of life. Consider the following study from 1994, in which emergency care providers (EMTs, nurses, resident and attending physicians) were asked about the quality of life they anticipated should they personally sustain a spinal cord injury (SCI), which can result in extensive paralysis and sensory deficits. Among people with SCIs, 92% were glad to be alive, and only 10% rated their quality of life as “very poor”. However, in this study, only 18% of emergency providers surveyed imagined they would be glad to be alive with a SCI — and this disparity persisted across additional questions surrounding the extent of treatment they would want to receive [6].
It is possible that this disparity is attributable to lifestyle differences; for example, many of the providers surveyed could not continue to do their jobs if they sustained a SCI. However, there was a significant association between physicians who would not be glad to be alive with a SCI and those who believed continued treatment for patients with an SCI was too aggressive (P=0.006) [6]. Elaine Scarry put it best in her book, The Body in Pain: “To have great pain is to have certainty, [while] to hear that another person has pain is to have doubt” [7]. Healthcare providers have the same limitations as anyone else, in the sense that they cannot directly feel the pain of others, and therefore cannot understand the unspeakable. However, when able-bodied physicians determine YLD metrics, these widespread misconceptions can result in disproportionate distribution of funding, lowered quality of care, and, ultimately, life and death.
The current usage of DALYs perpetuates harmful assumptions about disabled people and the value of human life. However, they do play an important role in the vital practices of resource distribution, treatment priority, and health policy. In order to continue improving care surrounding disability, the ability to roughly quantify disability’s impacts is important to assess large populations as well as case-by-case scenarios. However, when the model of assessment itself devalues the lives of disabled people, we must consider if that is a disadvantage we are willing to accept.
Works Cited
Woolf, V. (1925). On Being Ill. Hogarth Press.
Simon, C. M., & Kodish, E. (2005). "Step into my zapatos, Doc": Understanding and reducing communication disparities in the multicultural informed consent setting. Perspectives in biology and medicine, 48(1), 123-S138.
World Health Organization. (2023). Disability-adjusted life years (DALYs). World Health Organization. Retrieved March 5, 2023, from https://www.who.int/data/gho/indicator-metadata-registry/imr-details/158
Grosse, S. D., Lollar, D. J., Campbell, V. A., & Chamie, M. (2009). Disability and disability-adjusted life years: not the same. Public Health Reports, 124(2), 197-202.
Arnesen, T., & Nord, E. (1999). The value of DALY life: problems with ethics and validity of disability adjusted life years. Bmj, 319(7222), 1423-1425.
Gerhart, K. A., Koziol-McLain, J., Lowenstein, S. R., & Whiteneck, G. G. (1994). Quality of life following spinal cord injury: knowledge and attitudes of emergency care providers. Annals of emergency medicine, 23(4), 807-812.
Scarry, E. (2006). The Body in Pain: The Making & Unmaking of the World. Oxford University Press.
Commenti