Dying in Old Age

U.S. Practice and Policy

Sara Moorman, Sara M. Moorman

• Publisher: Routledge
• Year: 2020
• Print ISBN: 9781138496897
• eBook ISBN: 9781351020169
• Topic: Social Sciences
• Subtopic: Gerontology
• Index: Social Sciences

Three-quarters of deaths in the U.S. today occur to people over the age of 65, following chronic illness. This new experience of "predictable death" has important consequences for the ways in which societies structure their health care systems, laws, and labor markets. Dying in Old Age: U.S. Practice and Policy applies a sociological lens to the end of life, exploring how macrosocial systems and social inequalities interact to affect individual experiences of death in the United States.

Using data from the National Health and Aging Trends Study and Pew Research Center Survey of Aging and Longevity, this book argues that predictable death influences the entire life course and works to generate greater social disparities. The volume is divided into sections exploring demography, the circumstances of dying people, and public policy affecting dying people and their families. In exploring these interconnected factors, the author also proposes means of making "bad death" an avoidable event.

As one of the first books to explore the social consequences of end of life practice, Dying in Old Age will be of great interest to graduate and advanced undergraduate students in sociology, social work, and public health, as well as scholars and policymakers in these areas.

1

THE PREDICTABLE DEATH

Each year since 2000, approximately eight of every 1,000 residents of the United States has died (Murphy et al., 2018).¹ In 2018, that amounted to about 3 million people. Someone who is attentive to the news might be excused for believing, for example, that infections with flesh-eating bacteria contribute substantially to that number. But in fact, most deaths in the U.S. today are considerably less newsworthy affairs: Three-quarters of the people who die in the U.S. each year are adults over the age of 65, and they die from one or more chronic illnesses such as heart disease or cancer (Murphy et al., 2018). This regularity or uniformity to death is new, historically speaking, and makes death more predictable in at least four ways.

First, deaths today are predictable in that doctors may anticipate them. That is, the major causes of most deaths today are age-related chronic illnesses where the course of illness, the standard treatments, and the general probability of death are well known to medicine (National Center for Health Statistics, 2019). For a variety of reasons discussed in the chapters of this book, doctors may fail to expect a patient’s death and may instead experience it as a surprise. An individual’s prognosis remains difficult to estimate with much specificity, for example (Christakis, 1999). However, doctors today are 75% accurate at identifying who among their patients is likely to die within the next year (White et al., 2017). This state of affairs is quite different from most of human history, when deaths were unpredictable because they were commonly due to outbreaks of communicable diseases that could afflict persons of any age (Omran, 1971, 1988). Before the invention of vaccines, antibiotics and other drugs, and supportive care techniques, there was comparatively little that medicine could do to prevent death or even to make dying people more comfortable.

Second, today’s deaths are predictable because patients have some agency to prevent or delay the major causes of death. Chronic illnesses are sometimes called lifestyle diseases because of their strong correlation with diet, exercise, exposure to toxins, and even expectations for the future (Khullar, 2015). Certainly, constraints such as a lack of socioeconomic resources prevent people from being able to live as they might prefer. But people today have a great deal of control over their health compared to the era of communicable diseases, in which people could do little to protect themselves, particularly before the advent of germ theory. Now, for example, adults who say that they expect to live another 50 years take more care with their substance use, sexual risk behavior, exercise frequency, and sleep duration than people who do not expect to survive as long (Scott-Sheldon et al., 2010). Older adults who have a longer personal life expectancy exercise more regularly than people who expect to die at a younger age, and also adhere better to physical therapy regimens aimed at rehabilitation from a disease, injury, or surgery (Kahana et al., 2005; Levy et al., 2012; Ziegelmann et al., 2006). In this way, expectations and desires regarding longevity can be self-fulfilling prophecies now when they could not be ever before (Levy et al., 2002).

Third, death is often predictable enough that people can plan ahead for it, with some scholars arguing that the end of life has become a stage in the life course, like infancy or adolescence (Carr & Luth, 2019). Chronic illnesses are often long enough in duration that people at the end of life may say goodbye to loved ones, write an autobiography, establish legacies, and prepare psychologically or spiritually (Carr, 2012a; Catholic Spiritual Direction, 2015). People can also consider their values and ideas about quality of life, so as to form preferences for medical care in their last days (Carr, 2012b). People can settle their financial affairs: The Federal Trade Commission even provides online tips for savvy shoppers who want to plan their own funerals (Federal Trade Commission, 2012). People may choose not to prepare, or circumstances may prevent them from planning, but this is quite different from a time in which the probability of living to old age was much less certain.

Fourth, because chronic illnesses are long-term and progressive, it is predictable that most people will die in later life after a period – sometimes years – of increasing disability. Governments and societies, as well as individuals and families, need to plan on this period. At the national level, planning includes supporting robust retirement programs for older adults who cannot work as well as creating and staffing health systems to provide universal, ready access to affordable, high-quality health care (Bloom et al., 2015). Local communities need to build and maintain age-friendly infrastructure, such as accessible public transportation, such that people with disabilities can live there (Buffel et al., 2018). These are major economic challenges for the nation, especially given that by mid-century, there will be more Americans over the age of 65 than under the age of 18 (Colby & Ortman, 2014).

About the Book

This book is about predictable death. How did it come about? What social changes made it possible? Now that it is here, what are the unique opportunities it offers and challenges it poses to individuals and societies? How might Americans implement those opportunities and meet the challenges?

In Chapter 2, I explain how, historically, the U.S. arrived at the predictable death. It came about quickly, with increases in life expectancy in the 75 years between 1900 and 1975 that were greater than the increases in the previous 250 years combined (Uhlenberg, 1980). I describe the demography of mortality in 1900, the earliest date for which reliable nationally representative data are available for the United States. I go on to contrast these circumstances with conditions in approximately 2015, along with the substantial effect that increases in death by suicide and overdose had after 2015. I cover epidemiological transition theory, an explanation for these rapid changes.

An emphasis in this book is attention to social inequality. The predictable death involves macrosocial systems that establish patterns of interpersonal experiences at death, which take shape along lines of social difference such as race/ethnicity, social class, gender, marital status, and age. Typically, group inequalities are not neutral; rather, one group suffers the brunt of problems. Usually, members of that group are underrepresented in the institutions that could make effect change, such that their problems are often invisible and obdurate.

Each chapter focuses on one or two sources of stratification. Other inequalities exist, but I do not seek to review them exhaustively in each chapter. Rather, my purpose in drawing focus to different markers in each chapter is to demonstrate the wide array of inequalities in predictable death in the U.S. Chapter 2 focuses on educational attainment and on geographic variation. Educational attainment is associated with disparities in almost all measures of mortality, for every gender and racial/ethnic subgroup, and at all ages (Hummer & Hernandez, 2013). Similarly, where a person lives matters. For example, in 2007, men’s life expectancy was higher in 122 other nations than it was in the poorest-faring county in the United States, indicating that far from all Americans enjoy the benefits of living in the wealthiest nation on Earth (Egen et al., 2016). I describe these inequalities and discuss the reasons for their existence and the possibilities for their elimination in the future.

Chapters 3 through 8 address the opportunities and challenges that the predictable death has yielded. I divide these chapters into two three-chapter sections. One of the giants of U.S. sociology, C. Wright Mills (1916–1962), developed in the concept of private troubles and public issues. His classic example is:

When, in a city of 100,000, only one man is unemployed, that is his personal trouble, and for its relief we properly look to the character of the man, his skills, and his immediate opportunities. But when in a nation of 50 million employees, 15 million men are unemployed, that is a [public] issue, and we may not hope to find its solution within the range of opportunities open to any one individual.

(Mills, 1959)

That is, frequently individuals share their seemingly personal life experiences with others, because those experiences are the product of larger-scale social patterns and historical circumstances.

Chapters 3, 4, and 5 address problems with predictable death that many people regard as intensely intimate and singularly individual: pain and suffering at the end of life, the challenge of finding high-quality care providers for a dying loved one, and the phenomena of loneliness and social isolation. Each chapter illustrates, however, that these problems are remarkably common, even characteristic of, dying in the U.S. today. Far from being the result of individual choices or particular personalities and relationships, these problems are the result of the way the health care economy and the national policies that govern care work and care receipt are structured. These private troubles are in fact public issues of the first order.

Chapter 3 highlights ways in which, ironically, people cannot or do not predict predictable deaths. That is, people generally understand that they will die from their chronic illness, but not when they will die. Half of people who are diagnosed with congestive heart failure, for example, die within five years of diagnosis, while the other half survive more than five years (Mozaffarian et al., 2016). For this and other chronic illnesses, invasive, intensive treatment often becomes the patient’s new normal way of life until eventually, treatment fails and he or she dies. Many people go through protracted suffering in an effort to live longer, and death comes as a bit of a surprise. Hospice is one model of an alternative way to approaching dying and death that is more consistent with many people’s preferences for their last weeks and days of life. I include suggestions about how doctors, patients, and families could better capitalize on the predictability of death to achieve more comfortable, peaceful deaths.

Racial and ethnic group disparities in experiences at the end of life are the focus of the inequalities segment of Chapter 3. From conception throughout the life course, Americans of color are sicker and more likely to die than White Americans (National Center for Health Statistics, 2016). Thus, when dying, persons of color are more likely than Whites to die in the intensive care unit of a hospital, and less likely than Whites to receive adequate symptoms control and referral to hospice (Johnson, 2013; Tschirhart et al., 2014).

Chapter 4 covers the people whose work is to care for those who die predictable deaths. People who have chronic illnesses often progressively lose independence as they become sicker, which means that they require help with daily tasks. Care work takes place in a variety of settings, including private homes, outpatient clinics, the hospital, and long-term care facilities such as nursing homes and assisted living facilities. Care workers may be paid or unpaid, related to the patient or not. Paid care workers alone comprise 27% of the health care workforce in the United States, and by one estimate, they provide 70 to 80% of the care delivered in long-term care facilities (Dawson, 2016; Harmuth & Dyson, 2005). They constitute one of the largest occupational groups in the United States, outnumbering teachers, cashiers, fast food workers, and public safety workers (PHI, 2011).

One commonality is that both paid and unpaid care workers are typically women whose own socioeconomic status suffers because they provide care: The U.S. has yet to develop viable ways of compensating the people who labor to provide care for people who are dying a predictable death. As a result, older women in poverty in later life are twice as likely to have provided care to their parents compared to older women who have incomes above the poverty line (Wakabayashi & Donato, 2006). Thus one of the sources of stratification I address in this chapter is gender, and the other is nativity. In some states, such as New York and California, immigrants comprise more than 40% of direct care workers, and in some metropolitan areas, such as New York City and Miami, they comprise more than 70% of such workers (Espinoza, 2018; Hess & Henrici, 2013). The vast majority of professional care jobs involve physically and emotionally taxing work for low pay and few benefits, and immigrant women take these jobs because they are unable to get better jobs or lobby for improved conditions within the profession (Hartmann & Hayes, 2017).

Chapter 5 addresses the ways in which loneliness and social isolation are problems for people who are dying predictable deaths. There are fundamental questions about how the predictable death itself – with its concomitant illness and disability – and social isolation mutually generate one another (Holt-Lunstad et al., 2015). Dying people can become lost in cycles of poor physical health, despair, and isolation that did not occur before the predictable death. ...

Table of contents

• Cover
• Half Title
• Series
• Title Page
• Copyright Page
• Table of Contents
• List of Tables
• Series Editor Introduction
• 1 The Predictable Death
• 2 The Demography of Death
• PART I: Private Troubles
• PART II: Public Issues
• Index