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

Chapter: 2. Key Data Elements Pertaining to the End of Life

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Suggested Citation:"2. Key Data Elements Pertaining to the End of Life." 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.
×

2
Key Data Elements Pertaining to the End of Life

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

Suggested Citation:"2. Key Data Elements Pertaining to the End of Life." 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.
×

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.

DEFINITION OF “THE END OF LIFE”

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.

CATEGORIES OF DATA RELEVANT TO THE QUALITY OF LIFE AND CARE OF PEOPLE AT THE END OF LIFE

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

Suggested Citation:"2. Key Data Elements Pertaining to the End of Life." 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.
×

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

TABLE 2-1 National Hospice and Palliative Care Organization Recommended Outcomes

Self-determined life closure

• Staff will prevent problems associated with coping, grieving, and existential results related to imminence of death

• Staff will support the patient in achieving the optimal level of consciousness

• Staff will promote adaptive behaviors that are personally effective for the patient and family caregiver

Safe and comfortable dying

• Staff appropriately treat and prevent extension of disease and/or comorbidity

• Staff treat and prevent treatment side effects

• Staff treat and prevent distressing symptoms in concert with patient’s wishes

• Staff tailor treatments to patient’s and family’s functional capacity

• Staff prevent crises from arising due to resource deficits

• Staff respond appropriately to financial, legal, and environment problems that compromise care

Effective grieving

• Staff treat and prevent coping problems

• Staff coach the patient and family through normal grieving

• Staff assess and respond to anticipatory grief

• Staff prevent unnecessary premature death

• Staff identify opportunities for family members’ grief work

• Staff assess the potential for complicated grief and respond appropriately

• Staff assist the family in integrating the memory of their loved one into their lives

Suggested Citation:"2. Key Data Elements Pertaining to the End of Life." 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.
×

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.

Suggested Citation:"2. Key Data Elements Pertaining to the End of Life." 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 2-2 Existing Conceptual Models for Assessing Quality of Care at the End of Life

Context

Structure

Process

Outcome

IOM Model

 

Culture, norms, social institutions

Care settings

Personnel

Establishing diagnosis and prognosis

Physical (symptoms and function)

Demographic

Geography

Clinical policies, protocols, guidelines

Establishing goals and plans

Psychological (emotional, cognitive)

Economic system resources

Information and decision support systems

Financial policies

Providing palliative and other patient care

Spiritual

Political system, policies, regulations

Caring for families, bereavement care

Perception of care

Individual and family characteristics

Coordinating care including transfers among settings

Monitoring, improving care Burden of care

Dignity, control over decision-making

Survival

Stewart Model

Patient and family situation

Access to care within system

Technical process with patient

Patient satisfaction with care

Clinical status, case-mix

Organization of care

Decision-making process with patient and family

Family satisfaction with care

Social support for patient

Formal support services available

Information, counseling of patient and family

Interpersonal and communication style with family

Quality of life of patient

Social support for family

Physical environment(s) of care

Quality of life of family and loved ones

Quality of dying of patient

 

Length of life

Suggested Citation:"2. Key Data Elements Pertaining to the End of Life." 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 2-3 Proposed Domains and Selected Data Categories

Emanuel

Teno

American Geriatrics Society

Data Categories

Physical symptoms

Symptom management

Physical and emotional symptoms

Cause of death

Comorbid conditions

Physical symptoms

Physical function

Psychological symptoms

 

Global quality of life

Psychological symptoms

Quality of life

Cognitive status

Social relationships

 

Support of function and autonomy

Household composition

Site of death

Social supports

Economic and caregiving responsibilities

(family information, education, support, and bereavement support)

Family burden

Family care giving

Out of pocket costs

Bereavement support

Hopes and expectations

Shared decision making

Advance care planning

Advance directives

Decision-making

 

Patient satisfaction

Patient and family expectations

Satisfaction with care

Communication

 

 

Lack of aggressive care near death

 

 

 

Survival time

 

Philosophical or spiritual beliefs

 

Supportive services

 

Coordination of care

Provider continuity and skill

Health care utilization

Quality of care

Quantity of care

Cost of care

Access to care

Continuity of care

 

Provider information

Service integration

Suggested Citation:"2. Key Data Elements Pertaining to the End of Life." 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.
×

BOX 2-1 Questions to Assess and Monitor How Well Individuals’ End-of-Life Needs Are Being Met

  • Where are people dying and how much of the end of their lives is spent in those settings?

  • Who is providing care for them as they die? Do institutional settings support family presence at the end of life?

  • Are physical and psychological symptoms being identified and treated (including but not limited to pain)?

  • How many persons experience impaired cognitive function before death, to what degree, and for what period of time?

  • How many persons experience physical disability or social isolation before death, to what degree, and for what period of time?

  • How do patients and loved ones perceive their quality of life at various time points prior to death?

  • Are patients and loved ones achieving a sense of life closure?

  • Are patients and loved ones involved in decision making about treatment and care options?

  • Do dying persons have adequate access to supportive end-of-life care?

  • What forms of health care delivery are most helpful in promoting end-of-life care goals?

  • Are patients and loved ones able to make informed decisions based on timely and adequate information about what to expect, treatment options, services, and resources?

  • Are patients and loved ones receiving supportive services from chaplains, therapists, health aides, and other providers?

  • Are family physical, emotional, and financial resources being heavily depleted by the care of a dying family member? Are burdens spread across many or borne by a few?

  • Are loved ones supported through the grieving process?

Suggested Citation:"2. Key Data Elements Pertaining to the End of Life." 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 21
Suggested Citation:"2. Key Data Elements Pertaining to the End of Life." 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 22
Suggested Citation:"2. Key Data Elements Pertaining to the End of Life." 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 23
Suggested Citation:"2. Key Data Elements Pertaining to the End of Life." 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 24
Suggested Citation:"2. Key Data Elements Pertaining to the End of Life." 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 25
Suggested Citation:"2. Key Data Elements Pertaining to the End of Life." 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 26
Suggested Citation:"2. Key Data Elements Pertaining to the End of Life." 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 27
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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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