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

Chapter: 1. Introduction and Overview

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Suggested Citation:"1. Introduction and Overview." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
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1
Introduction and Overview

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.

Suggested Citation:"1. Introduction and Overview." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
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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.

BACKGROUND ON END-OF-LIFE ISSUES

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.

Suggested Citation:"1. Introduction and Overview." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

TABLE 1-1 Numbers of Deaths by Age Group, 2000

All ages

2,404,598

Under 1 year

27,987

1-4 years

4,964

5-14

7,386

15-24

31,259

25-34

40,409

35-44

89,652

45-54

160,014

55-64

241,029

65-74

441,991

75-84

701,173

85 and older

658,295

 

SOURCE: Minino and Smith, 2001.

NUMBERS AND CAUSES OF DEATH IN THE UNITED STATES

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.

Special Emphasis on Deaths of Children and Young Adults

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

Suggested Citation:"1. Introduction and Overview." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

TABLE 1-2 Top Five Causes of Death, by Age Group, 2000

Age Group Rank

Infant (<1yr)

1-4 yrs

5-14 yrs

15-24 yrs

25-44 yrs

45-64 yrs

> 65 yrs

1

Congenital anomalies (birth defects)

Accidents

Accidents

Accidents

Accidents

Cancer

Heart disease

2

Short gestation/ low birthweight

Congenital anomalies (birth defects)

Cancer

Homicide

Cancer

Heart disease

Cancer

3

Sudden infant death syndrome

Cancer

Homicide

Suicide

Heart disease

Accidents

Stroke

4

Complications of pregnancy

Homicide

Congenital anomalies

Cancer

Suicide

Stroke

Chronic lower respiratory disease

5

Respiratory distress syndrome

Heart disease

Heart disease

Heart disease

HIV infection

Pneumonia & influenza

Pneumonia & influenza

 

SOURCE: Minino and Smith, 2001.

Suggested Citation:"1. Introduction and Overview." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×

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.

OVERVIEW OF THE CURRENT REPORT

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.

Organization of the Report

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.

Suggested Citation:"1. Introduction and Overview." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×
Page 16
Suggested Citation:"1. Introduction and Overview." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×
Page 17
Suggested Citation:"1. Introduction and Overview." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×
Page 18
Suggested Citation:"1. Introduction and Overview." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×
Page 19
Suggested Citation:"1. Introduction and Overview." Institute of Medicine and National Research Council. 2003. Describing Death in America: What We Need to Know: Executive Summary. Washington, DC: The National Academies Press. doi: 10.17226/10619.
×
Page 20
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National expenditures for medical care in the months and days preceding death are enormous. But we do not know whether that money is buying good quality care or optimizing the quality of life of those dying, or whether the situation is getting better or worse over time. The information that exists “describing death” at a national level – though some of it is very informative – is fragmentary. This report recommends ways to fill the information gaps by better use of existing nationally-representative data, and through some new measures, in particular, a new, ongoing National Mortality Followback Survey. The aim is to allow us to benchmark where we are today as a society, and what goals we can set to minimize pain and suffering and maximize the quality of life of all of us who will die in the years to come.

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