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

The National Cancer Policy Board concluded initsJuly2001report, Improving Palliative Care for Cancer (IOM, 2001), that there is currently insufficient information to assess the quality of care provided to those who die from cancer in the United States. The Board noted that we have little understanding of the particular dying experiences of most patients with cancer—where they die, who cares for them as they are dying, what the quality of such care is, whether relevant guidelines are being followed, and whether these things are changing over time. This lack of information hampers our ability to develop a clear policy agenda and will, in the future, impede monitoring trends to determine whether interventions are having their intended effects of improving the quality of life and care for individuals at the end of life.

“Quality of care” is a subjective concept, of course, but various groups have begun to define some minimum standards that can be agreed upon, as well as ideals to be considered. Quality of care is not an end in itself, either for the temporarily or the fatally ill. It is one factor that can contribute to “quality of life,” regardless of the amount of time left to that life. In this report, we are concerned about describing both “quality of care” and “quality of life” near the end of life. They are distinct qualities and require different types of measurements, related either to the process and outcomes of care, in the former case, or the perceptions of the dying and those around them, in the latter.

Knowing how well we are doing or whether things are getting better in end-of-life care requires some routinely collected information. It may be possible to make better use of data already being collected (including those collected for other purposes), but it also may be desirable or necessary to gather new types of data. The Board, therefore, decided to undertake an assessment of the information potential of current data sources to assess quality of life and quality of care at the end of life. Recognizing that the issue existed not only for deaths from cancer, but for all deaths, this report was undertaken in collaboration with the Board on Health Sciences Policy in this project that looks at deaths from all causes and at all ages, including childhood.

The National Cancer Policy Board was established in March 1997 at the Institute of Medicine (IOM) and National Research Council to address issues that arise in the prevention, control, diagnosis, treatment, and palliation of cancer. In April 1999, the National Cancer Policy Board released a report, Ensuring Quality Cancer Care (IOM, 1999), which included a recommendation to “Ensure quality of care at the end of life, in particular, the management of cancer-related and pain and timely referral to palliative and hospice care.” The Board’s July 2001 report Improving Palliative Care for Cancer further explored that mandate through a collection of commissioned papers covering economic issues, quality indicators, patient and family information, care of vulnerable populations, pediatric oncology, clinical practice guidelines, research issues and professional education. Recommendations were made in a number of those areas, but the Board deferred recommendations related to data collection until a follow-on report could evaluate (1) the capacity of currently collected data to assess care at the end of life and (2) the needs for data in the future to monitor improvement efforts. This report fills that gap.

The National Cancer Policy Board’s July 2001 report on palliative care is the immediate predecessor of this report, but a broader foundation in this area had been laid by the Institute of Medicine’s 1997 report Approaching Death: Improving Care at the End of Life. The 1997 report, produced by the Institute’s Committee on Care at the End of Life, proposed a conceptual definition of a good death: one that is free from avoidable distress and suffering for patients, families, and caregivers; in general accord with patients’ and families’ wishes; and reasonably consistent with clinical, cultural, and ethical standards. The key components of this definition will be incorporated into the later discussion of data elements needed to monitor the quality of care at the end of life.

In the year 2000, 2.4 million Americans died (Table 1-1). Most—1.8 million—were older than 65, but half a million died in early and late middle age. About 28,000 infants died before their first birthday, and 44,000 children and young adults—from age 1 to age 24—were among those who died in 2000. The patterns of mortality vary among age groups, as one would expect (Table 1-2). Heart disease and cancer predominate in older age groups, and hence, overall. Even among children and young adults, however, cancer is an important cause, and other conditions that may involve prolonged periods of decline and dying (including chronic diseases and congenital anomalies) are also significant.

In the United States, death in childhood is rare. This was not the case 100 years ago, and still is not in many parts of the world today, but here, death before adulthood stands out as a particular tragedy, not a commonplace event. These deaths take on far greater significance than their numbers would suggest, touching thousands more parents, siblings, grandparents, other family members, friends, neighbors, schoolmates, and professional caregivers.

In this report, we take note of how well or poorly childhood and young adult deaths are accounted for in national data collections. The numbers of these deaths are so small, they may not show up at all (or may be intentionally excluded) in sample surveys, but there is still a need and

a desire to understand more about the dying experiences of the young people who die and their survivors. The recommendations in Chapter 5 include ways that this can be accomplished.

This report by the National Cancer Policy Board addresses four key questions:

1. What data would ideally inform end-of-life care?

2. What data are currently available to describe dying in America?

3. What methodological issues must be considered in the collection and use of data about dying?

4. What steps can be taken to enhance data collection efforts so that they can be used to monitor and improve the quality of end-of-life care?

To prepare this report, the Board contracted with staff at the RAND Center to Improve Care of the Dying to compile a catalog of nationally representative surveys, disease registries, administrative and billing data, and vital statistics files which could be used to describe the experience of dying in America. These datasets address the full range of ages and potential causes of death. A panel of experts critically reviewed the resulting catalog to (1) assess the extent to which existing data could be used to describe care at the end of life; (2) identify the limitations of current data collection efforts; and (3) develop strategies to improve the data available to monitor the quality of end-of-life care.

Chapter 2 describes proposed domains of quality of life and quality of care at the end of life and identifies data elements that might be available in current datasets to permit monitoring care.

Chapter 3 summarizes administrative information about the large publicly available datasets that track decedents and describes the data elements that capture information relevant to end-of-life care.

Chapter 4 outlines methodological issues, such as the generalizability of existing samples, limitations of survey methods, use of proxy data, confidentiality and linking datasets, and other issues uniquely associated with collecting information about the end of life.

Chapter 5 summarizes the report findings and presents the National Cancer Policy Board’s recommendations.