By Kevin Mintz, PhD and David Magnus, PhD
Note: The following editorial was recently published in the American Journal of Bioethics, Volume 21, Issue 11 (2021).
The two target articles in this issue draw an important connection between disability bioethics and geriatric bioethics. Dominic JC Wilkinson (2021) makes a pragmatic case for using frailty as a factor in the allocation of scarce resources in the Intensive Care Unit (ICU), arguing that doing so avoids ableist and ageist objections. Meanwhile, Andrew Peterson, Jason Karlawish, and Emily Largent (2021) articulate a framework that places supported decision-making for adults with mild cognitive impairments squarely within the auspices of disability rights. Taken together, these two articles illustrate that medical decision making for people with disabilities as well as for older adults poses similar ethical questions about how we can best respect the dignity and autonomy of vulnerable patients.
Interestingly, both articles neglect the ethical challenges that arise from inequalities in existing levels of social support for aging patients with significant disabilities. This oversight places both articles squarely within mainstream bioethics, which focuses more on issues of autonomy, individual decision making, and individual rationing choices rather than on justice and equity. Wilkinson, for his part, does not pay adequate attention to how inequalities in social capital and other resources might contribute to a determination of frailty for some patients, but not others. Wilkinson asserts that the clinical frailty scale measures “not the disability per se…rather…the underlying physiological and physical vulnerability.” With this statement, Wilkinson appears to be implying that one can separate bodily functioning from one’s social context.
The experience of many individuals with disabilities speaks to the reality that one’s overall level of health and wellbeing is influenced by access to social supports and other resources as much as a particular diagnosis (Shakespeare 1995: 32-4). While frail patients are unlikely to regain health once they reach an ICU, frailty is similar to disability in that one’s level of social support can contribute to whether particular conditions cause someone to become frail. Appropriate support from a home healthcare worker can, for example, prevent someone from losing complete mobility after sustaining injury from a fall. Certainly there are illnesses that arise in the aging process from which it is difficult for someone to recover. However, Wilkinson’s argument would be strengthened by a more extensive discussion of how underlying inequalities and injustices in healthcare arising from a lack of social support likely contribute to socially disadvantaged patients becoming frail from conditions that more socially advantaged patients might recover from. In the context of the Covid-19 pandemic, justice should not only be considered in terms of the allocation of scarce resources, but also in evaluating what is owed to socially disadvantaged patients who are more likely to need critical care. At a minimum, the high likelihood that proposals like Wilkinson’s will increase inequity as ICU resources are targeted to the socio-economically better off (who are likely to be less frail) requires comment.
Questions arising from inequalities in a patient’s preexisting social ties are even more central in evaluating the strengths and limitations of Peterson et al.’s arguments in favor of supported decision making. The main questions the article raises are: who can most benefit from supported decision making, and how can society cultivate the conditions that will maximize opportunities for people with intellectual impairments to exercise decision making in ways that correspond to their levels of cognitive functioning?
In answering the first question, Peterson et al. assume that an individual with intellectual impairments has a preexisting support network of family or friends who can help facilitate supported decision making. In their article, they envision an individual situated to utilize different people in their social networks who can express preferences regarding who makes different types of decisions (housing-related, medical, financial). But not all are fortunate enough to have such a strong social network. This reality makes Peterson et al.’s framework particularly exclusive given that patients with Alzheimer’s disease and related dementias tend to be socially isolated.
The arrangements described by Peterson et al. can only be put into place if people with Alzheimer’s and other intellectual disabilities have many preexisting social relationships based on trust and interdependence. In reality, many of these patients lack such connections and are vulnerable to abuse and neglect. Abuse and neglect are reflective of the social inequities patients with various forms of intellectual impairments confront because of how reliant they may be on others.
In Section 5.2, Peterson et al. acknowledge that abusive relationships are barriers to both supported decision making and surrogate decision making. We agree with their analysis, but think that a lack of relationships and social networks can be yet another barrier, specifically to supported decision making. While it may be self-evident that supported decision making requires preexisting interpersonal relationships, the framework will exclude many people with intellectual impairments who might otherwise benefit. The lack of robust social networks for people with intellectual disabilities is reflected in empirical studies on loneliness and social isolation within this population (Amado 2013; Petroutsou, Angela, and Ali 2018). For patients with mild cognitive impairment, living alone can raise the likelihood of developing dementia and contribute to earlier onset (Grande et al. 2018).
Institutionalization can also contribute to higher levels of self-reported social isolation. One study found that individuals with intellectual disabilities living in intermediate care facilities and Medicaid waiver-funded group homes with more than 7 residents reported feeling more lonely or isolated than those living in their family’s home or smaller community-based settings. The researchers hypothesize that this finding is associated with a greater level of individual choice over one’s living conditions in family-based or smaller group settings (Stancliffe, Lakin, Taub, Chiri, and Byun 2009). For older patients, living in a nursing home is associated with increased social isolation and loneliness, both predictors of adverse health outcomes for residents (Simard and Volicer 2020). The Covid-19 pandemic has only exacerbated the extent of social isolation for people with intellectual disabilities, especially those who are institutionalized (Navas et al. 2021; Simard and Volicer 2020).
Further, Peterson et al.’s conception of supported decision making as an exercise of relational autonomy requires that beneficiaries and their supporters have enough trust and rapport to communicate clearly and honestly about their personal preferences and the domains of social life in which they excel or have difficulty. Here, too, people with various kinds of intellectual impairments might be disadvantaged in a way that excludes them from the supported decision-making process. Specifically, people with intellectual impairments are often discouraged or prohibited from forming intimate relationships with others because of fear of exploitation and abuse. Such fear might be warranted in some cases, but can often be just a manifestation of ableism or ageism (Mintz 2017; Mintz 2018; Tarzia, Fetherstonhaugh, and Bauer 2012). As such, we question how inclusive relational autonomy and supported decision making can be in institutional contexts where people with intellectual impairments confront social attitudes and public policies that make it harder to form and maintain intimate relationships. Supported decision making cannot fully promote rights of all patients with intellectual disabilities unless social and political institutions remedy injustices in the realm of intimacy for this population.
As with Wilkinson, Peterson et al.’s approach has the potential to increase inequity as socially supported, more highly resourced individuals will be more likely to utilize supported decision making. In order for supported decision making to be accessible to all otherwise-capable people with intellectual disabilities, public health measures should undermine policies and practices that contribute to social isolation among this population. Healthcare systems and other institutions committed to autonomy cannot guarantee that each individual can have a supported network of intimates. Respect for autonomy requires honoring an individual’s freedom to choose those with whom they have intimate relationships. However, these institutions can and should provide greater access to resources and opportunities that enable the formation of such relationships (Mintz 2014; Mintz Forthcoming 2022). Professional caregivers should receive more professionalized training on how to facilitate social interactions for people with intellectual disabilities in a non-intrusive way. Medicaid waiver programs and Medicare should be expanded to provide people with intellectual disabilities access to transportation and other supports that make it easier to participate in community activities.
The articles by Peterson et al. and Wilkinson are excellent examples of important work to improve decision making for and by marginalized people with disabilities and older adults. However, like much of our field, the authors do not pay enough attention to considerations of equity, justice, and how well-intentioned improvements may inadvertently increase inequitable access to resources. Alternative measures such as the reforms suggested above are only a starting point to identifying potential changes to ableism and ageism in healthcare. Moving forward, bioethics should always consider how proposals affect equity.