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Describing Death in America What We Need to Know: Executive Summary (2003) / Chapter Skim
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2. Key Data Elements Pertaining to the End of Life
Pages 21-27

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From page 21...
... 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.
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From page 22...
... 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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From page 23...
... 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 meaTABLE 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 .
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From page 24...
... 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~.
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From page 25...
... . Over c .ec~s~onmaking Monitoring, improving care Survival Patient and family Access to care Technical process Patient satisfaction situation within system with patient with care Clinical status, Organization Decision-making Family satisfaction case-mix of care process with patient with care and family Social support Formal support Quality of life of for patient services available Information, patient counseling of patient Social support Physical and family Quality of life of for family environments family and loved of care Interpersonal and ones communication style with family Quality of dying of patient Length of life
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From page 26...
... 26 DESCRIBING DEATH IN AMERICA TABLE 2-3 Proposed Domains and Selected Data Categories American Geriatrics Emanuel Teno Society Data Categories Physical Symptom Physical and Cause of death symptoms management emotional Comorbid conditions symptoms Physical symptoms Physical function Psychological Global quality of Psychological symptoms life symptoms Quality of life Cognitive status Social relationships Support of Household composition function and Site of death autonomy Social supports Economic and (family Family burden Family care giving caregiving information, Out of pocket costs responsibilities education, support, Bereavement support and bereavement support) Hopes and Shared decision Advance care Advance directives expectations making planning Decision-making Patient satisfaction Patient and family expectations Lack of aggressive care near death Survival time Satisfaction with care Communication Philosophical or Supportive services spiritual beliefs Coordination of Provider Health care utilization care continuity Quality of care and skill Quantity of care Cost of care Access to care Continuity of care Provider information Service integration
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Key Terms

  • data categories
  • declining health
  • palliative care
  • american geriatrics
  • staff treat

  • psychological symptoms
  • bereavement support
  • national hospice
  • staff prevent
  • life closure

  • geriatrics society
  • chronic illness
  • family information
  • categories identified
  • premature death

  • care organization
  • advance care
  • care giving
  • care planning
  • respond appropriately

  • data elements
  • slow decline
  • symptom management
  • specific outcomes
  • social relationships

  • prevent treatment
  • represent information
  • categories representing
  • compromise care
  • improved care


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