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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



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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

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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

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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

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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.

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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

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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

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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?