Waiting for care: Chronic illness and health system uncertainties in the United States

Abstract

Structures of power and inequality shape day-to-day life for individuals who are poor, imposing waiting in multiple forms and for a variety of services, including for healthcare (Andaya, 2018a; Auyero, 2012; Strathmann and Hay, 2009). Constraints, such as the age requirements for Medicare, losing employer-provided health insurance, or the bureaucracy involved in filing for disability often require people to wait to follow recommendations for medical treatments. In 2016–2017, we conducted 52 narrative interviews in St. Louis, a city with significant racial and economic health inequities and without Medicaid expansion. We interviewed people with one or more chronic illnesses for which they were prescribed medication and who identified as having difficulties affording their prescriptions. Throughout the interviews, participants frequently recounted 1) experiences of waiting for care, along with other services, and 2) the range of strategies they utilized to manage the waiting. In this article, we develop the concept of active waiting to describe both the lived experiences of waiting for care and the responses that people devise to navigate, shorten, or otherwise endure waiting. Waiting is structured into healthcare and other social services at various scales in ways that reinforce feelings of marginalization, and also that require work on the part of those who wait. While much medical and public health research focuses on issues of diagnostic or treatment delay, we conclude that this conceptualization of active waiting provides a far more productive frame for accurately understanding the emotional and physical experiences of individuals who are disproportionately poor and made to wait for their care. Only with such understanding can we hope to build more just and compassionate social systems.

Medication Adherence and Characteristics of Patients Who Spend Less on Basic Needs to Afford Medications

“…Physicians must openly communicate with patients about their financial situation and, ideally, make referrals to medication and basic needs assistance programs. Such assistance programs often require lengthy waits 19 ; in the meantime, physicians can help patients prioritize spending in a manner most conducive to good health, as medications may not always be the most urgent need.…”

“…23,24 This challenge of "competing priorities" has been documented across diverse lowincome populations and for various health carerelated behaviors 18,25,26 and was highlighted in the qualitative interviews we conducted with survey participants. 19 Participants explained how limited resources constantly force them to make undesirable trade-offs, large and small. Often, participants sacrificed their time or exchanged an immediate benefit for a larger future reward.…”

“…Spending less on basic needs to afford medications-the outcome of our present analysis-is in fact one of a broad spectrum of trade-offs that participants employed. 19 There is some evidence that housing and food instability are associated with a shift from use of primary care to more emergency department and hospital care. 27 Individuals who cannot afford basic needs may spend less on chronic disease management-including medications and primary care visits-to try to allocate resources for basic needs.…”

“…Some participants in our study recognized that this may cause health conditions to worsen over time, such that balancing health and basic needs becomes even more difficult. 19 Conversely, our study included many people with unmet basic needs who made the opposite trade-off, namely, spending less on basic needs to afford medications. This too may lead to negative outcomes.…”

“…This analysis reports on the survey data; limited data from the qualitative interviews and quantitative survey have been presented elsewhere. 19,20 Cognitive interviews were used to refine the survey before administration to study participants. Participants were recruited from multiple sites throughout St. Louis, MO, including the waiting rooms at 4 sites of a Federally Qualified Health Center, an academic medical center, and local newspaper advertisements.…”