Whither the Good Death?
When asked, the majority of Americans say they would like to die at home, free from pain, and having said goodbye to loved ones. Dying peacefully at home and surrounded by loved ones may not seem like a lofty aspiration for the end of one’s life.
Yet, the reality of death in America often does not reflect those expectations. Despite declines in the proportion of Americans dying in hospitals, Americans spend more time than ever before in intensive care units in the months leading up to death, often undergoing invasive and painful procedures that add days to one’s life while compromising quality of life.
At first blush, it may seem like where and how we die is a matter of intimate personal preference or choice (called agency in sociological parlance). However, these decisions are not a matter of choice alone. Social structure is also at play. As Max Weber explains, institutions and the bureaucracies they embody organize people and assign roles and responsibilities so that society runs smoothly. The flip side of this organizational facilitation is that, in order to consolidate and maintain their authority, institutional structures impose constraints on individuals.
The institution of medicine—doctors, hospitals, and the professional authority they embody—is inextricably intertwined with death and dying. Doctors and hospitals are important facilitators and barriers to achieving a “good death.” Physicians have the authority to recommend specific treatment or determine whether a patient should receive hospice care. Hospital policies and procedures also dictate the type of care patients automatically receive in an emergency or are offered for chronic illness.
Indeed, much medical sociological work has been devoted to this topic in the last half-century, addressing topics ranging from how patients are categorized and treated upon arrival to the emergency room to how doctors and hospitals approach death and dying.
However, if we stop there, we miss a major part of the sociological story. In addition to considering the complicated structural relationship between medicine and death, we need to also think about how personal experiences with and everyday images of illness and death inform the disconnect between how people say they would like to die and what they are likely to experience.
Personal experiences with death are related to social demography and socialization. From a population perspective, due to increased life expectancy, most people in the United States die at increasingly older ages. Rather than experiencing death for the first time during childhood and then multiple times throughout the course of our lives, many of us will not face the death of a close loved one—such as a parent, sibling, or spouse—until pretty far into adulthood.
It is a good thing that people are living longer. However, because we are often not directly exposed to death until our 40s, 50s, or 60s, and therefore not socialized to accept it as a normal part of life, the experience of death is unfamiliar—to say the least—and particularly jarring.
In addition to socialization factors, the images of illness and death presented in popular media also reflect and shape how we experience death as a society. While we may not personally experience the death of a loved one first hand for the first two-thirds of our lives, we are continuously—almost daily—exposed to death through popular media. The images of death presented in the media reflect an interesting—and confusing—contradiction in our collective understanding of death: a simultaneous denial of and fascination with death.
Television medical dramas such as ER and House provide an example of both fascination with and denial of death. The genre’s formula necessitates that every episode be structured around a life-threatening experience-we are drawn in and kept engaged by the idea that the patient on our television screen could die at any moment. At the same time, patients on these shows rarely do actually die. A study of medical dramas indicated that about 75% of patients survived hospital resuscitation (CPR). The actual CPR survival rate is estimated to be closer to 8%. If our only exposure to CPR is by watching George Clooney or Hugh Laurie save someone from the brink of death (and I would venture to say that is accurate for a good number of people), we may have some unrealistically high expectations for CPR’s ability to save us from death.
Similarly, news coverage of death sensationalizes death, rarely referring to the uncertain, human, or even mundane aspects of dying. Death is often depicted as the result of tragedy (such as the recent fertilizer plan explosion in West, Texas) or terror. Alternatively, death is something that happens in distant places as the result of natural disaster or war. Even when death does come to individuals that are chronologically near the end of life, it is characterized by the media as something to be unquestionably avoided (for example, when an 87-year-old woman dies of a stroke ).
Few of us can say with absolute confidence what our futures hold, the extent to which our aspirations will become reality, how similar or different our lives will be from those around us. We can, however, be completely sure that we will have one shared experience: death. And yet, as a society, we seem largely unconcerned with the reality of how death occurs on a day-to-day basis. Instead, we unquestioningly consume sensational accounts of death as either heroically averted or tragically and unfairly endured. In doing so, we almost guarantee that the disconnect between how we hope to spend our final days and moments and how we are likely to do so, will remain.