Adaptation and illness severity: the significance of suffering

Abstract

Adaptation to illness, and its relevance for distribution in health care, has been the subject of vigorous debate. In this paper I examine an aspect of this discussion that seems so far to have been overlooked: that some illnesses are difficult, or even impossible, to adapt to. This matters because adaptation reduces suffering. Illness severity is a priority setting criterion in several countries. When considering severity, we are interested in the extent to which an illness makes a person worse-off. I argue that no plausible theory of well-being can disregard suffering when determining to what extent someone is worse-off in terms of health. We should accept, all else equal, that adapting to an illness makes the illness less severe by reducing suffering. Accepting a pluralist theory of well-being allows us to accept my argument, while still making room for the possibility that adaptation is sometimes, all things considered, bad. Finally, I argue that we should conceptualize adaptability as a feature of illness, and thereby account for adaptation on a group level for the purposes of priority setting.

Severity in the genomic age: the significance of lived experience to understandings of severity

“…Such consequences can impact a person's ability to concentrate, their daily activities, work, and socialise [16,17,[24][25][26][27][28]. Hence, people living with pain can become isolated and depressed [26,29]. These consequential effects can have profound negative impacts on the social aspects of people's lives in addition to their mental health [25][26][27].…”

“…Finally, most environments are generally designed for healthy, able-bodied people [30][31][32]. This can mean that people living with genetic conditions that affect their ability to conform to such environments are more likely to struggle in them or require adaptations to navigate them [12,29]. Trying to navigate such environments can often add to people's pains both physical and psychological, particularly if they cannot access or afford support which may make navigating ableist environments easier.…”

“…Further, they do not account the impact of disease on people's mental health and how this can also impact people's quality of life. As the presented findings suggest, lived experiences highlight a more holistic view of the impact of a disease, rather than a reductionist view of biomedical factors which can be influentill to calculating QALY [8,9,29]. Lived experiences could therefore assist policy-makers (and others) across the globe to understand why some people may want to utilise genomic technologies to treat themselves or prevent future generations from being at risk of sharing such experiences.…”

“…However, this argument is often based on research which explores hypothetical scenarios rather than lived experiences. Thus, while there is a growing range of research which in part or entirety considers the concepts of severity or seriousness as part of their aim [8][9][10]29], more research with people who have a range of genomic conditions is needed to ensure a more comprehensive and holistic framework for assessment can be designed.…”

What Do ‘Humans’ Need? Sufficiency and Pluralism

“…Rather, the claim is that a person’s finding their situation intolerable justifies a special moral concern with helping them. Even if we think that some people make a mistake in tolerating, or even feeling contentment at, situations that are objectively bad, it is still worse in one respect to live in a bad situation and find it intolerable (Jølstad, Forthcoming ). Thus, while someone’s finding their situation tolerable does not remove our reasons to help them, someone in a similar position who finds it intolerable is thereby worse off, and thus has a stronger claim to benefit.…”