Describing Death in America: What We Need to Know: Executive Summary (2003)

The effort to better understand and toimprove thecarereceived by those at the end of life will require better information about dying—not just about the demographic characteristics and health conditions of those who die, but also about their quality of life as they cope with declining health, the quality of their death, and the quality of the health care provided to them during this time.

If we aim to achieve good quality of life even with declining health, and death without unnecessary suffering, undue financial burden on the family, and with respect for individual and family preferences, one of the things we must do is monitor data that provide information about these aspects of dying. Nationally representative surveys, disease registries, health care billing data and vital statistics are among the possible sources of this information. To date, most analyses of data from identified decedents has focused on factors contributing to death, rather than on the experience of dying. Thus, for example, the National Mortality Followback Surveys (NMFS) were conducted primarily to obtain information on important characteristics of the decedent that may have affected mortality (Seeman et al., 1989). The public health goal was to learn how to better prevent premature death, with the implicit assumption that almost any death could be delayed. This is evident even in the topics of the most recent (1993) NMFS, which included socioeconomic differentials in mortality and the associations between risk factors and cause of death.

To better understand dying, rather than how to delay death, a very different set of topics would be of interest, perhaps including characteris

tics of the site of death, symptoms and quality of life in the last year of life for patients and their families, patient preferences for and continuity of care in the last year of life, and family burden (physical, psychological, practical, and financial). The purpose of this chapter is to review the existing literature on quality of life at the end of life and quality of care at the end of life in order to identify data elements that would provide useful information about dying in America.

Designating a period of time as “the end of life” is a difficult but necessary first step. The conceptual model of a “terminal illness” has driven most current public policy about dying, though dying is not so easily predictable for most Americans. Death more frequently occurs during an exacerbation of an otherwise chronic illness or from a complication associated with a very long slow decline in old age (Lunney et al., 2001).

Although any operational definition of end of life would have to depend upon the dataset used, for the purposes of this report, the end of life is defined very broadly. In this report, the term includes the period of time during which an individual copes with declining health from an ultimately terminal illness—from a serious though perhaps chronic illness or from the frailties associated with advanced age even if death is not clearly imminent. We note that life’s ending can come at any age and time, and that death at a young age is a special sorrow (IOM, 1997). Finally, we note that the terms “family” and “loved ones” will be used interchangeably in this report to connote those who have a close connection to the dying person, regardless of their genetic or legal ties.

Numerous public discussions and focus group research have helped us to understand what the American public values in the care of the dying (Steinhauser et al., 2000a, b; Teno et al., 2001). Domains relevant to the quality of health care and quality of life include the following:

• The management of symptoms;

• Spiritual and personal growth;

• A familiar setting, surrounded by loved ones;

• Understandable information to guide decision making and planning;

• Confidence that one will not be a financial, emotional, or physical

burden to family members; and

• Right of self-determination, control of treatment choices.

Likewise, professional organizations have begun to identify desirable care outcomes and guidelines for practice. The National Hospice and Palliative Care Organization (NHPCO) produced a document outlining key outcomes to be targeted by hospice and palliative care groups within three domains: self-determined life closure, safe and comfortable dying, and effective grieving. Table 2-1 summarizes these outcomes. The emphasis here is close to the time of death, without emphasis on prior advance care planning and coping with declining health. Yet the specific outcomes recommended by the NHPCO also fit within the broader domains described by other authors.

In a recent paper describing the capacities and limitations of information systems as data sources on quality of care at the end of life, Nerenz proposes the following “dimensions of quality” or types of quality mea

sures that would have a place in a comprehensive quality measurement system: evidence-based guidelines, adverse events (including deaths), length of survival, quality of survival, respect for preferences, and satisfaction (Nerenz, 2001).

Some investigators have modeled factors affecting the quality of care at the end of life in terms of the generally accepted framework for an assessment of quality of care—i.e., in terms of context, structure, process, and outcomes (IOM, 1997; Stewart et al., 1999). Table 2-2 provides an overview of two such models: the Institute of Medicine’s model and the Stewart model.

Others in end-of-life care have focused on the identification of key domains for measurement in order to monitor quality of life and quality of care at the end of life. Emanuel has identified six “malleable inputs” or areas open to intervention by the health care system: physical symptoms, psychological symptoms, social relationships, economic and care giving responsibilities, hopes and expectations, and philosophical or spiritual beliefs (Emanuel and Emanuel, 1998). These ideas provide the basis upon which to compare domains from other sources. Teno has identified five key domains for measurement: symptom management, shared decision-making, patient satisfaction, coordination of care, and continuity of care (Teno et al., 2000; Teno, 2001). In addition to these domains, she notes the importance of family information, education, support, and bereavement support. The American Geriatrics Society adopted a list of 10 principles designed to stimulate further efforts to develop performance standards that can lead to improved care at the end of life (Lynn, 1997).

Table 2-3 presents a comparison of three such efforts—Emanuel, Teno, and the American Geriatrics Society—and forms the foundation for a selection of data categories representing information that might be found in currently existing large datasets.

The data categories identified in Table 2-3 represent information that can be expected to exist now within large data collection efforts. These elements only begin to answer the pressing questions about the end of life, including those shown in Box 2-1.

The data categories identified in Table 2-3 above and the questions posed in Box 2-1 provide a framework for the evaluation of information currently available in large datasets in Chapter 3.