The Ethics Of Population Aging: Precarity, Justice, And Choice

The field of bioethics has worked hard to promote patient choice, especially in the context of end-of-life care. In 1987 The Hastings Center published consensus guidelines affirming the right of patients to forgo the use of life-sustaining technologies when the patient (or family, in the case of incapacitated patients) deemed such care more burdensome than beneficial. These guidelines, which were revised and expanded in 2013, were informed by a 1983 US presidential commission’s report on patients’ decision-making rights. These norms, central to patient-centered care, are now in place throughout the United States and in many countries around the world.

Yet ethical challenges near life’s end are not limited to bedside decision making. As humans live longer than ever before, longevity introduces a decades-long process of chronic progressive illness, age-associated frailty, and cognitive decline. Bioethics has contributed greatly to enhancing the rights of patients to guide treatment decisions, but it has fallen short in addressing population-level concerns that aging societies now face. We wondered what bioethics research can do for an aging society beyond continued improvements to provider–patient communication and treatment decision making.

In 2015 The Hastings Center began to discuss this question with the trustees and advisers of the Robert W. Wilson Charitable Trust, a New York City–based grantmaker funded by the estate of Robert Wilson, who died in 2013. While Wilson’s philanthropy during his lifetime was focused on issues outside of health care, he had personally reflected on the consequences of aging and illness.

Crafting A New Research Agenda

In 2016 the Wilson Trust made a two-year, $240,000 grant to The Hastings Center that was unusual in two ways: it was outside the scope of the trust’s interests, and it was explicitly meant to support two years of thinking and planning, rather than research. Our goal was to identify a range of ethical challenges confronting aging societies and craft a new research agenda to respond to those challenges. We aimed to focus on identifying population-level concerns, by looking at structural factors in access to needed care for older adults. In addition to building the capacity of bioethics as a field to respond to population aging, we also strove to identify bedside-level questions coming into view since the 2013 edition of The Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life.

The Wilson Trust grant, supplemented by an internal fund at The Hastings Center, enabled us to convene two 2017 meetings of an international work group of scholars, practitioners, and advocates. Participants came from the fields of architecture and design, housing, social and environmental gerontology, and urban planning, as well as fields long associated with bioethics, such as disability studies, family caregiving, health care improvement, health grant making, health policy, law, medicine, philosophy, political science, and sociology. The most proximate result of these meetings was a peer-reviewed, open-access special report, which The Hastings Center published in October 2018.

The report, which we co-edited with social gerontologist Kate de Medeiros, includes a range of essays on cultural ideas and social policies capable of mitigating—or worsening—age-related disadvantages in late life. For example, experts on aging and housing (Jennifer Molinsky and Ann Forsyth) analyzed the mismatch between the housing needs of our aging population and the way housing is currently planned and built in the US and offered suggestions for how public and private spaces could better support everyday life for older adults and their caregivers. Two social gerontologists (Amanda Grenier and Christopher Phillipson) draw on the economic concept of “precarity” (the idea that contemporary economic conditions create precarious situations for some groups, and that social policy should aim to mitigate this disadvantage) to articulate a critical gerontology of precarity. They argued that policies and philanthropic initiatives focused on “healthy,” “successful,” or “active” aging obscure the foreseeable physical and socioeconomic precarity experienced by many older adults. Because age-associated illness is part of aging, and people often grow poorer with age because of structural factors, such as lack of access to jobs with pensions, rather than a personal “failure” to plan, social policies in aging societies should realistically reflect and compensate for age-associated precarity.

In addition to the report, the initial two-year grant culminated in an internal “blueprint” for research priorities to guide new projects at the population and individual levels. At the population level, our new work is informed by the concept of precarity in late life, and how justice issues in unequal societies such as ours in the US intersect with aging and caregiving.

Unequal Aging

The Wilson Trust has made an additional grant of $65,000 for focused work on “unequal aging.” This work draws on empirical findings on how lifelong social determinants of health, including access to income, pensions, and housing equity, shape the experience of older adults and family caregivers. By late life, people who are not already wealthy have little opportunity to accrue more “options,” such as the ability to pay out of pocket for amenities-rich assisted living. This new work will examine how community values and processes of deliberation—including perceptions and biases concerning affordable housing and competing priorities concerning the built environment—are social factors that may limit who has the opportunity to age in a place, whether this place is a home, a neighborhood, or other desired environment. A key collaborator will be the Joint Center for Housing Studies of Harvard University.

Dementia And The Ethics Of Choosing When To Die

We have also received a new two-year, $350,000 grant from the Wilson Trust to take up an individual-level research priority emerging from our planning process. “Dementia and the Ethics of Choosing When to Die” will afford a much-needed opportunity to consider a challenging set of issues. When older adults are asked to consider their preferences for care near the end of life, questions focus on whether they choose to use or forgo life-sustaining interventions. Under this mental picture of “choices” is the recognition that a person who is nearing the end of life should be able to say “enough,” forgo interventions in a terminal disease process, and turn to symptom relief and comfort even if this means life is shorter. However, there is no treatment for dementia, and decisions about other end-of-life conditions (such as whether someone with a life-threatening heart condition would want to use an implantable device to support heart function in the context of dementia) do not directly speak to the situation of a person facing dementia but no other terminal condition.

This new project aims to put dementia in the foreground, by asking, which choices matter to a person facing the dementia trajectory? Should these choices include a way to say "enough" in a way similar to—but not the same as—stopping cancer treatment or refusing mechanical ventilation? What would these choices look like? This project will reflect evidence and perspectives from dementia science researchers, dementia care practitioners, gerontologists and other scholars who study aging and disability as socially embedded experiences, people facing dementia in their own lives, and scholars and practitioners familiar with legal, ethical, and practical aspects of end-of-life choices. Products from this grant will include a peer-reviewed special report to be published in 2021.

These grants have afforded the opportunity to work across fields that have rarely, if ever, collaborated, to consider how bioethics can help to engender new ideas and moral imperatives for our aging societies, and to help people in the United States to see themselves as citizens of our aging society, whether they are older adults, caregivers, or members of communities that include people in the last stage of life. Thinking anew about precarity, justice, and choice in our aging society has been an exhilarating process, and we have only just begun.