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Describing Death in America What We Need to Know: Executive Summary (2003) / Chapter Skim
Currently Skimming:

1. Introduction and Overview
Pages 16-20

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From page 16...
... 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.
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From page 17...
... , 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)
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From page 18...
... 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.
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From page 19...
... 19 CD ~ ~ .m he A S o ~ C CD U ~ ~' 'u O At,= An.
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From page 20...
... 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.
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Key Terms

  • policy board
  • palliative care
  • data elements
  • improving palliative
  • collection efforts

  • heart disease
  • congenital anomalies
  • current data
  • report approaching
  • track decedents

  • economic issues
  • quality indicators
  • information potential
  • assess quality
  • data collections

  • pediatric oncology
  • available datasets
  • deferred recommendations
  • linking datasets
  • improve care

  • including chronic
  • issue existed
  • monitoring trends
  • currently collected
  • including childhood

  • current datasets
  • board addresses
  • commissioned papers
  • chronic diseases
  • billing data


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